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Our Journal I
TodayKeep up the angel work baby. I love you.
TodayHi Angel. Merry Christmas. We woke up at Grammie Webbs and you know what you sent us!! SNOW!! Do you think that Snow is funny little one? Does it make you giggle? We love you angel. Have fun today.
TodayHi angel. Merry 1st Christmas in Heaven. We sure do miss you tons down here. I love you sugar bear. I imagine you all snuggled in to your heavenly bed, waiting for Santa to come to give you all the presents you can imagine. The REAL Santa lives in Heaven you know. Give The Grandma's, Grandpa's and Aunt Gina a BIG Christmas hug from us. Try not to drive them too crazy with all the rambunsious play Christmas morning. Sleep tight little one. I love you.
TodayTonite I'm lighting our candle for little Marshall Potter, who lost his battle against SMA 2 years ago. Cole and Marshall were born just days apart and now they are playing in heaven together. We love you buddy. Take good care of my boy.
TodayA month and a day. Can it only be a month and a day since you left us little one? It seems like years. I miss you ever so much.
TodayHi angel. Mom and dad arrived home from our trip to Mexico tonite. We talked about you a lot on this trip and took pictures of you with us so that you could be near. On our first Sunday there, we had a candle lighting on the beach for you and all the little angels that are with you up in heaven. It's so very hard here with out you. I think of you every day. Christmas is coming. As we flew into St. Louis tonite, I could see all the christmas lights down below. Tears welled up in my eyes. Is this how you see the world at Christmas time now? Can you see your mom and dad down here below? Your orchid has not bloomed yet. I was hoping that it would wait for us to get back home before it did. Now that we are home, open that blossom little one. Mommy and daddy miss you terribly. We love you so much little one.
TodayColey. Mommy found her necklace. Thank you for helping me. Love you angel boy.
TodayHi angel. Can't sleep and missing you something awful. Daddy and I were just lying in bed talking about you and what a good boy you are. He said he really misses how you used to snarl at him when he would give you prickly kisses. Some days, missing you, is almost more than I can bear, but I know that I have to be strong, just like you were strong every day of your life. . . Grandma and I were talking this weekend and we hope that you are GETTING DIRTY!! I don't know if there is mud in heaven, but I sure hope so! Now... Run over and give Marshall, Mia, Joseph and James a big hug from your mom. I love you sweet angel. I continue to see your angel work being done every day.
TodayColey.... Mommy has lost 2 things that are very important to her. You know what they are... Please help me to find them.
TodayHi angel boy. You sent me the most beautiful sign today. It was just what I needed. I've been smiling ever since. As you know. . . the orchid I bought for you while you were still here has suffered much neglect. It hardly got watered and I wondered if there was any life left in the poor plant at all. Last week I almost tossed it out and for some reason I threw some water on it anyway. Today I noticed 2 tiny little stalks with buds on the end of them. 2 tiny little stalks that will become flowers. 2 tiny little signs that tells me that you are ok. This plant hasn't flowered or grown at all since the original flowers fell off and I was just sure it was a lost cause. Thank you for showing me the way little man. I love you and miss you. Mom
TodayHi angel. I miss you so much. You continue to inspire and do your angel work here in heaven. I have just learned that there will be a color of specialty cross stitch floss named just for you. It's called Cole and is by Six Strand Sweets. This is part of the email I received from Jessica describing it for you..... The Colors of Cole... How could I pick just one or two colors to describe Cole? I cannot. Cole was a beautiful little rainbow He was a delicate sunset He was an awe-inspiring sunrise He was not a single rose, He was a field of wildflowers He was bright and vivid He was soft and sweet With the color pink, he was a symbol of love and friendship With the color peach he showed us true strength, as did his parents With a light yellow, he was a symbol of joy A soft green shows us Hope for Cole With a light blue, he was still a royal young man, a prince With a lavender, he was happy with eyes that smiled constantly
TodayHi Coley. Just checking in with you my angel baby. Every time we hear "Carol of the Bells" we think of you my angel boy. It used to make you giggle so much when we would sing it to you. Christmas is going to be very hard this year little man. I hope you have a HUGE tree and presents up to the sky!
TodayOh baby boy. Has it only been a week? I miss you so much it hurts. Thanksgiving is today. I remember like it was yesterday you in your turkey outfit. We celebrated your first Thanksgiving in Wisconsin with your Grammie and Grandpa Webb and cousins. This was your only trip to Wisconsin. I hope that you are behaving up in heaven. I know that you are having fun. Eat some pumpkin pie for me.... Mommy
TodayThank you for all your posts of kindness and support for our family. Our angel Cole was such a good one. He made it so easy for us because he was such a good boy. He never cried unless there was something terribly wrong. He was happy, smiley and so darn smart. Our lives will never be the same. The house is so quiet. So darn quiet. For 2 years I've always been listening for something, listening for the pulse ox machine to beep, listening to hear if the feeding pump was whirring, the constant buzz of the oxygen. Last night when I got home I avoided the downstairs for as long as possible. When I finally did go down to his room I just collapsed on his bed. Dan came down and rubbed my back. We took his bed down today and are trying to make our house look like a home again and not so much like a hospital. I've about 6 garbage bags full of supplies to donate to SMA Support and Cole's stroller. We are donating his pulse ox to another SMA child who will use it to it's fullest extent. Dan and I are doing as ok as can be expected. We are packing up all the toys he never played with and clothes he never wore. It's terribly sad, but in the process there are happy memories too, his tiny blue maracca, his snakey, his little frog. Although our hearts are broken we are going to try to keep on living for Cole, just as we did while he was here.... Around Cole's 1st birthday someone sent us a card with a message inside that I will never forget.... It said, "Cole truly is an angel and Dan and I are his wings." We hope we let you fly high here on earth little one until it was time to earn your real wings and fly in your own.
TodayToday was a hard day. We picked out Cole's flowers. We've selected white, blue and yellow flowers for him with sprays of orchids mixed in (Orchids for Cole). It seems so loney and empty without him here with us. I guess it always will. We try to be strong because that is what we know Cole would have wanted. We have shared tears, but we have laughed today also, something that was always so very important to us. We laughed a lot while Cole was here. It was always an important part of our day. We miss you little man. We love you little man. Godspeed little man.
TodayCole's Visitiation will be at the Houser Millard Funeral Home Sunday November 21, 2004 2613 W. Main St. In Jefferson City Missouri from 2-4 pm. His funeral mass will be at the Cathedral of St. Joseph 2215 W. Main ST., Jefferson City MO 65109 at 10 am on Monday NOvember 22, 2004 Expressions of sympathy may be made to SMA Support or to Families of SMA.
Today"I believe that angels breathe, and love will live on and never leave." Our little angel boy went to heaven this morning at 1:26 am. He was and always will be my hero, my greatest love. Cole was such a fighter. Such a "good one" as we so often called him. He passed so peacefully in his sleep and was gone before we even could do anything. Thank you my angel for choosing us as your mommy and daddy. "Come what may... I will love you till my dying day"
TodayWe've had a BUSY day!! Today we went to target to get Cole's Christmas pictures! Santa made a special trip in from the North Pole just to see our little angel!! He did SO good in the pictures, smiley and happy for several of them!! He's such a GOOD ONE!! It was very hard for me to decide which ones we wanted and what sizes to make them. Both Dan and Cole were getting aggravated because it was taking me such a LONG time!! Now I have to wait 2 weeks! I can't wait to pick them up!!
TodayOk. . . It's been awhile since an update. We've had a busy weekend. Cole's Gramie and Grandpa Webb were visiting this weekend and Grandpa Webb made Cole a swing for in the basement. Our little TV room keeps collecting more and more STUFF but I think that this is a GREAT addition. We put Cole on it today and we're not quite sure what he thinks of it yet. Over all Cole's doing a little better but both Dan and I have noticed some significant progression in the fact that he is needing more and more breakthrough coughing more frequently to keep him comfortable. Sometimes as often as 2 extra coughs a day. We have a meeting with Cole's therapy team on Friday. Wish us luck!! Other than that things are going ok. We are gearing up for halloween an if Cole is feeling well and it's not freezing cold or pouring down rain we are going to a few houses in the neighborhood. I'm not going to tell what he's going to be yet tho. . . YOu'll just have to wait for pictures!! Hugs from us KRistin and Cole
TodayI'm just having one of those days. I'm snapping at everyone and I'm just so very tired. I don't know what to do about Cole's sitting up issues. He has not acted comfortable and has had Sat issues since Wednesday when we sat up for an hour. Mommy instinct thinks this is not worth it, but the therapist in me knows that it will be so much more beneficial for him if he can tolerate the sitting position. I'm going to call his PT tomorrow and talk with her about my concerns. I just dont' know what to think. His Pulm doesn't think he's aspirating, but after the crash on Friday I'm scared to do much of it. I've asked Cole's grampie Webb to make us a platform swing that we will hang from the deck. Hopefully we will be able to use it before it gets colder. Anyway. . . GROUCHY
Todayok. Here's a cheeseball moment. I was driving home, listening to Deliah ( for those of you who aren't familiar with this radio program, she plays sappy love songs and tells sappy stories). Oh boy, I must be getting OLD because I'm listening to the easy listening station for the over 30!! Anyway, that song from Robin Hood by Bryan Adams came on, "Everything I do, I do for you" I know that it's just so cheesy, but I just started crying. I know that this is a love song, but something about those cheesy words just hit me in a funny way tonite. Everything I do, little Cole, I do for you. I love you so much little one. You stayed up till midnight last night singing. You have the sweetest little noises and I could listen to them every minute of every day. Mommy and daddy love you so very much.
TodayHi guys. Here's the weekly update from me. Well, my sore throat turned into a full blown cold on Wednesday. I'm starting to feel a lot better now but I'm still really tired. I've been extra careful when I have to suction Cole because I have to put the suction catheter directly in his mouth. I've been masking, gloving, washing, santizing so much that my hands are so raw that my thread is catching on the roughness! Poor hands. But we can't be too careful around Cole. So far, no sign of hm catching anything but he did sneeze yesterday and I haven't heard that child sneeze since he was 4 months old. Such a tiny little sneeze. Today marks a sad anniversary for us. 2 years ago today we were sent to the ER and they told us that there was something wrong with our child. 2 years ago today our nightmare began. We've come a long way in 2 years we have had ups and downs and in betweens. I'm a very differnent person than I was 2 years ago, a better person, but different. Mr. Cole sends germ free hugs and kisses. Keep him in his thoughts until I'm totally better and we know he's not going to catch anything. Kristin
TodayARGGGHHHH!!!! I have a cold. I've been dealing with a sore throat for 2 days and now my nose is getting stuffy. Just like anything else, I'm terrified that Cole is going to get sick. I hate SMA. I hate that we have to live in fear of every sneeze or every cough. That we have to wonder, I'm I getting sick or is this just an allergy. I hate this so much. I dread winter time. I dread all the germs that are flying around in the air. I'm having our nurse wipe EVERYTHING down with clorox wipes when she gets here and I've been hand washing like a fool and wearing a mask around Cole, but I'm afraid if he's going to get it that he's already been exposed yesterday morning when I just thought it was an allergy or that I snored last night. I HATE YOU SMA.
TodayI'm having a proud mommy moment. Cole has had 2 days that have been really great. I'm so proud of my little big man. First of all, he's feeling better. That's always a plus. He's going to be on antibiotic for another week but he's been in a good mood for 2 days in a row. You have no ides what this means around here. Next. . . We bought a boom mic stand for him. I know you guys are saying "Whatt??? !!!" What would a 2 year old need with that?? WELL!! We suspend his arm sling over the perpendicular arm and he gets some arm movement with it. You should see him go to town!! I wish I could play video here! We took a picture of Cole with his Developmental therapist playing with his computer yesterday. He used the computer 2 days in a row and is really geting the hang of the hands free mouse!! Lastly, he sat up in the chair this morning, No SMALL accomplishment for our little big man. Look at him go!
TodayMR. Cole is getting a BIG SCREEN TV ~~ TONITE! A couple of months ago we sent a wish request to the Children's Wish Foundation. (Cole was not old enough to apply for Make a Wish) Cole's wish was denied with them stating that Cole was too young to wish for a big screen TV. They sent me a nasty gram by the foundation and sent all my pictures of Cole that I had mailed to them back to me. I read the letter they sent us to our night time nurse and she was really upset that an organization that deals with families of terminally ill children could act like that. (The letter really was not nice). Our nurse was talking about Cole and his wish to another one of her nursing friends. That friend in turn told someone else she knew about Cole. Our nurse called today and she said that there is a little mom and pop tv place here in town who has DONATED a big screen TV for Cole and they are going to deliver it TONITE! I'm so touched that a total stranger who had just heard through the grapevine about our little man would do that! I just CAN"T believe it!! I all seems just so unreal!! The kindness of strangers...... Update on our little man. Yesterday was trying again with breathing issues. He couldn't get comfortable to sleep yesterday either. He had a rough coughing session and he's very positional today. Doesn't want to be on his back or side, only on his tummy. Our little man works SO hard to do everything, even breath well. I hate that life has to be so hard for him. It's like running a marathon to even lift his arm. I do have a fun story. ... When we went to Glennon on Thursday, I have a light up squish ball that he likes to hold with me. I said " Do you want it? Bring your arm up" He bent his arm up from the elbow ( something that is REALLY hard for him to do). I gave him the ball and then I said "give it to momma" and he opened his fingers and let the ball roll out into my hand. We did this 3 times!! Such a proud momma moment! Krisitn
TodayCole is a pretty sick little one. His doctor was concerned about his color and the sound of his lungs. She want's to agressively treat him for pneumonia and pseudomonas with tobi and cipro. They decided against doing a chest x ray because they would treat it the same even if it did show positive for pneumonia. She asked us if we were still comfortable with our decisions about not using a ventiator when he cannot breathe on his own and we said that we were. He had a nother rough night last night and we ae getting ready for a cough right now. I think that he's exhausted from the activity and hopeuflly he will sleep tonite. Keep our little man in your prayers.
TodayHappy 2nd Birthday Cole! I hope you have a real fun time. A friend of Lily's,Karen
Today2:30 am ********* Happy 2nd birthday sweet little Cole. 2 years ago they put an angel in my arms and I knew my life would never be the same. Cole, when you were born your daddy said, "Krissy, he's amazing." We didn't know at the time how true those words would prove to be. You are amazing little mister. You are so smart and have such a strong spirit. You have told the world volumes without speaking a word. You have touched more lives than I can even count just by doing your angel work. I am proud to be your mommy and I love you little one with all my heart. Please keep reminding me of what is important. Please remember that mommy loves to see your smile more than anything else in the world. I love you sweet angel. Mommy
TodayHi my sugar bear. You birthday is less than 2 days away. I love you little one. Mommy
TodayI'm sitting here listening to Dan and Cole play flash cards. I feel a little bad because the doctors told us that we would not have to worry about educational things for Cole, so we didn't. Now we are almost 2 and Cole has no idea what a lot of words are. I hear Dan say "Cole, where is the eye? Where is the mouth? Where is the nose?" and hold up the flash cards and Cole is learning to look at the pictures to tell us what is what. It's going to be a very long process but Cole is so smart. The biggest hurdle is getting his attention off the Veggie tales. I love you baby Cole. 10 days until you turn 2!!
TodayWe went out last night for Dan's birthday and left Cole with our beloved nurse Laurie for a couple of hours. My mom and dad arrived around 9:30 and our dog Loki was upstairs in our bedroom sleeping on our bed, Cole was downstairs in the family room sleeping. Nurse Laurie was upstairs in the kitchen (on the middle level between the dog and Cole) getting a soda and talking to my mom for a minute. Loki came running down the stairs and started whining at her and nosing her toward the stairs. She went downstairs and discovered that Cole's pulse ox has been bumped and the battery had died. Strange coincidence or Angel intervention? Loki wasn't in the room with Cole but something woke him up and told him to get her downstairs. Very strange. Kristin and Cole
TodayI was talking to my sister today and telling her about Angel Taleah and how smart and beautiful and special she is. I was sitting on our front porch and a humming bird flew up about 2 feet from my face, looked at my roses, looked right at me and flew off. I don't have a feeder and I haven't seen a humming bird in years. I do believe it was a sign. Oh Tia. Our heart just breaks but we know that you are running and jumping and playing. Stay close to you mommy and daddy and little Colin and your loving big brother and big sister too. Keep them safe.
TodayCole. Today is your wonderful daddy's birthday. 1 year ago we took pictures of you on his birthday after your bath and that picture has become one of my FAVORITE pictures of all of you. Today we are going to take more pictures and I hope that they come out equally wonderful. You have changed so much in the last year and our love for you grows and grows for you each day. I sometimes listen to your daddy talking to you and singing to you on the monitor. It just makes me so happy to know that you have such a wonderful daddy.
TodayIt's been a trying day and a half. Cole was not feeling very spunky yesterday afternoon and today he was even worse. He was not sleeping well for his afternoon nappy and then later in the evening we had one of those dreaded nose bleeds. It took about 25 minutes for it to finally stop but we were unable to cough the blood out of his throat and we are always very hopeful that none was trickling down into his lungs. He was pretty freaked out about it for a long time and hopefully we will not have any more incidents tomorrow. He's sleeping comfortably right now ( it's 11:45 pm) which I'm thankful for and hopefully he will wake up and be my smiling boy tomorrow. We had a good weekend with Grammie and Grandpa webb. We even took Cole to the mall for about an hour. He likes to ride in the stroller and as long as you kept moving he did ok. Silly bear. We really wish that we could have a portable pulse ox so that our trips out would be easier, oh to wish. I've been looking at them on ebay, but am a little scared to drop that kind of money for one. they are SO pricey. I've been trying to think of some fundraising ideas to possibly get one, but that's all they are right now. Ideas. We found out some GREAT GREAT GREAT news. Our good friend Laurie is expecting a HEALTHY baby and we learned that another SMA family who lost baby Christian is now expecting a HEALTHY baby. We are SO happy for these 2 families. congrats you guys.
TodayHi monkey boy. You are sleeping and I am waiting for your dadda to get home. You have not been sleeping well lately because of those darn ole molars that are trying to come in. I feel them in there but I just wish I could get them through faster for you.
TodayI am saddened to write that my dear friend Michelle Gualeni has passed away. She has gone on to become a real angel, much like the angel she was here on earth. She has helped our family in so many ways, more than she ever knew I'm sure. Michelle had given me the patternmaker software so that I could stitch the beautiful SMA Angels pictures for families, sent so much love and support and fun packages to keep us feeling positive and always had so much love for our little Cole. It makes my heart ache. She was one of the most generous people I had ever met and I am thankful that I even knew her at all. I hope that she uses her newly found angel wings to watch over our dear little Cole while he sleeps and is there to sweep him up in her arms when it is his time. Dearest Michelle, you will never be far from our hearts
TodayCole is doing fine today. We had some good news from his speech therapist. We are starting to work on communication with eye gaze with him and he has a little bit of hand movement and she thinks that he's ready to start working with a communication board. It will be REALLY simple, like 1 or 2 pictures that he can touch to activate that will play a message, but it can be adapted as he progresses. I'm terribly excited because I didn't think that he would be ready this quickly for one. She says he's just doing AWESOME in his speech therapy. Also, his hands free mouse came in yesterday and daddy is going ot hook it up today to see how he does with it. I"m going to best buy to see if there are any Cole appropriate games for him to play. Most probably we will need infant games. Toddler games are still too hard for him. Cole and I went out for a walk in the neighborhood last night in the stroller. It took me a half hour to get everthing ready to go and then we were out for about 20 min and then it took a half an hour to get everythign back to normal in the house. He just has to travel with so much equipment. Feeding pump, pulse ox, oxygen, suction, big adaptive stroller. All that for a short walk outside. No wonder we dont' leave the house ever. I chatted with some of our neighbors who haven't seen him in a year and they are just in awe about how big he is. He really is BiG! Linda is going to flip her lid when she comes to visit in August!! Did I mention that Linda is COMING TO VISIT US IN AUGUST!!!!! We are terribly excited. Anyway, that's the news on our end. Hugs to the birthday girls today. Kristin
TodayOh sweet baby Cole. You amaze me every day. You learned a new trick today. Mia's mommy brought you a mini pinwheel when she was visiting you yesterday and you learned how to turn it with your finger. We spent about 20 minutes last night watching you turn it round and round. What a smart little monkey you are. I was looking at your pictures tonite from a year ago with another SMA mommy and laughing at how FAT you were!! I cannot believe how big you have gotten and how smart you are. You have touched so many lives Mr. Cole, more than you or I will ever know. Keep up the angel work little man. Mommy is so proud of you.
TodayHeaven gained yet another SMA angel today. Beautiful little Gilly Powell went to join the other angels that have gone before her. She was such a beautiful little girl and although I have never met her, only spoken to her mom and dad a handful of times, my heart is just breaking. I HATE SMA. I hate it with every ounce of my being. Kristin
TodayWell, Cole had quite a day. At 4 am this morning Cole feeding tube had come out. I put it back in but it had pulled out so far that it was no longer in his intestine but rather up in his stomach. I called the Footprints program and told them the emergency and luckily we got in this afternoon. Thankfully my best friend Michelle was able to rearrange her life to help us bring him to the hospital because Dan was unavailable in Chicago and my sister had a cold and my mom was unable to drive up. We headed to Glennon this afternoon after Cole's nap and it was quite the trip. Cole kept dropping his sats the WHOLE way there. We switched drivers in the middle of the highway (ususally I drive and just have the person with me sit with cole in the back) but I pulled over 3 times and then switched. I had to bump his o2 way up just ot keep him stable. He stablizied shortly (about 15 min) after we arived at the hospital. We had to wait about an hour before we could get the tube replaced and they had a lot of trouble getting it in. We asked about the kind of tube Jimmy has, but the radiologists docs refuse to place that kind of tube. GGRRRR! The nurse we talked to said that they have had a lot of trouble with the kind Cole has (another child has it too) and the company Kimberly Clark was out this week to talk to the doctors about this other type of tube. Hopefully they will listen and next swap out will be like Jimmys. It took over an HOUR to get the tube to go in right. They had to take it toally out because it was so kinked up and then it wouldn't go back in right. After about a half hour Cole had had it and started crying and crying. They were pushing on his tummy, which I'm sure was sore to start out with and he just had tears rolling down his cheeks. It broke my heart. He cried for about a half hour. He's still not sleeping now and fussing quite a bit. He has had mortrin and a dose of moriphine for pain and hopefully he will calm down soon and get some MUCH NEEDED sleep. He didn't get his nighttime cough but hopefully that iwll be ok. Heart rate is sky high and he's just not comfortable. Unfortunately he was fasted for for a long time today (unavoidable) and I worry always about that. Kristin
TodayOH, Forgot to add Cole and Devin (the little one who passed) would have been 3rd cousins
TodayWe always thought we had the origin of SMA in our family line figured out. Dan (my husband)'s dad had a brother, Jimmy, who died a a very young age. His death certificate said "absence of pectoral muscles, congenital abnormality" This in our minds screams SMA. My mom also had a sister Betty Jo, who died of pneumonia before she was 4 months old. My grandma said that she was always a weak baby and no milk agreed with her (swallowing issues?) We just assumed that it was from my mom's side of the family that carried the gene. Well.....................We have had the most BiZaRRE day. This is what happened. In march of last year, my work did a story about Cole in their news letter. Shortly after it came out a woman called me and told me of her grandson, Devin, who died of SMA. Today this same lady, Dodie, called me. It turns out that her dad is my grandma's brother. The wild part is that it's on MY DAD's SIDE! I almost dropped the phone. She was at a family reunion this weekend and asked where my dad was and my Aunt Mary Jane and Uncle Fred explained about Cole and about SMA and that they were probably here in St. Louis helping me and Cole. The totally bizarre thing is that Dodie had called me (then a total stranger) a year ago! I believe that everything happens for a reason and that she made that phone call a year ago for a reason. Maybe angels were guiding her to do so. Now we have to decide if it's worth for my parents to pay for the carrier testing, to see if one of them, (or both for that matter) is indeed a carrier.
TodaySTarting a new week, and ending last week, the week from hell as we affectionately call it. Without going into a huge pity party about why it was so bad, we are trying to do things to make this week a little better. Hopefully that will help. I have a ton of phone calls to make this morning but right now I'm trying to relax a little, pump Cole his breakfast, and take it one thing at a time. Mr. Cole went yesterday to get his feeding tube replaced. I am always amazed at what a good boy he is. Even when it's something like getting poked in the tummy with the feeding tube, he just takes it, like it's his cross to bear. He amazes me so much. Grammie drove up to help us get to the hospital and thankfully she was here . I forgot to bring a couple of things to the hospital, which made our trek even harder still. I swear, if my head weren't securely attached to my body it would go rolling down the street!! Cole has been cutting teeth and he's working on his first MOLAR! He has 11 teeth in so far and it looks so funny to see all those sharpies in his mouth. We ask him if he's going to bite his momma with all those chompers.
TodayCole gave us a scare last night. He desatted into the 50s at quite a quick pace. He was down below 90 for over 15 mins. He was very scared (we were too) and he was freaking out and crying, which wasn't helping the breathing situation. We coughed him with 5 liters bleeding through and he stablizied on elevated o2. he's still on higher levels and his heart rate is higher this morning. His nurse reported that he dropped his levels several more times last night, but didn't stay down and came back up after suctioning and positioning. We also had a feeding pump mishap, but I'm not even going to go there. Kristin
TodayWe wanted to thank Julie Border and her husband for their GENEROUS donation to Cole's quilts. Thank you so very much. It was so wonderful to talk to you in person today. It just put a big smile on my face. Thank you thank you thank you again. Kristin
TodayOur power was out for over 12 hours last night. Dan was home alone with Cole and he called frantic because he was unsure of how to turn on our back up o2 tanks. Thankfully my phone was in range and we had Cole on o2 quickly but his pulse ox battery had already died after 5 minutes. We HAVE to look into getting a battery operated hand held for emergencies. We just HAVE to. I cannot tell you that we were so thankful to have our generator. We were skeptical. We thought "Oh, we haven't had a power outage in YEARS." We'll make it through. Well, my friend Amy (abmommy from this board) insisted differently. She said that she was driving her dad's generator over to us (all the way from KC) and thank GOD we did. We were able to run on the generator, his concentrator, his cough assist when we needed it, his suction, his pulse ox, his tv, his vcr and his light. It's a good thing too because he slept 12 hours all day and was up all night. It saved Cole a trip to the hospital or a night in hotel room. As far as how he's feeling. . . it's too soon to tell. He fell asleep at 6 so I'll keep you posted.
TodayHe's feeling a little better this morning. Heart rate is in the 140s, but o2 is a little lower than I would like. He's not grunting or fussing which is good and watching his beloved veggies. I'm not sure if it's the orapred that is covering up his illness or if he's on the mend. Either way, he's comfortable right now and that's all I ask for.
TodayYesterday was just awful. It was almost more than I could handle. In addition to high heart rate, fever and a very sick boy, we had a feeding tube plug at 11 pm when just a couple of grains of Cipro (our nurse accidently grabbed the wrong syring to flush) got in his J tube. ARRRRGGGHHH!!!!! We did finally get it clear but I shudder at the thought of what would have happened if we didn' t. Had a terrible morning when we had to increase his o2, he had a big ole runny poopy, and while our nurse was trying to contain that he peed all over her and then desatted on her. She was quite the frazzle when she called us to come down and help. He was so exhausted that he fell asleep and did a little better after his cougher at 10. We started orapred daily again for the next 5 and hopefully that will help him feel better and open his airway so that we aren't "dry" coughing so much. He's been sleeping a lot and his heart rate was pretty good during this after noon nappy. He's still on comfort meds. Still don't know what any of this means. He's still running a temp and a very sick boy. Kristin
TodayCole is still very very sick. He has been asleep most of the day but coughing this morning did not go well. You can just feel the fluid rattling around in his chest and we can't get it back out of there. We have started the pulmicort again and he got his orapred burst today and tomorrow too so hopefully that will start to help us open things up some and bring up some of this fluid. He's thick in secretions and very dry over all. Just like he was in January when he was so very sick. We are all very scared, worried and concerned and praying praying. We are keeping as comfortable as we can.
TodayOh baby bee. I love you so much. I know that you are a sick little boy right now but I also know you have a lot of fight in you. Your doctors have you on the strongest antibiotics right now and we are trying to keep you comfortable. I love you so very much little man and I pray for only the best for you. If I could do this for you I would. Mommy
TodayAfter a pretty rough morning (starting around 4 am) we called the doctor and they have decided to put him back on the Tobi. His nurses feel that the oral steroid is masking some of the symptoms and that he's actually sicker than he appears. Secretions are still on the yellow side. Other than that we are just hanging out and hoping that he starts feeling much better soon. I miss my smiley guy.
TodayColey had a terrible night. He woke up with his chest PT at 10:30 PM and could not go back to sleep. He doesn't do this very often. He was up until 3 am!! (probably wanting to talk to Amy Barnett who is ususally still up at this time too!! tee hee!!) We gave him a quarter dose of moriphine becuase his heart rate was so high at 2 and then the rest of the dose at 3 a m to help him get more comfortable. He won't let us turn him tonite and has been on his stomach since 3. I'm not going to worry about that right now, just let him get some rest and I'll start his nebs and chest PT as soon as he gets up. I'm tossing our schedule out the window today. I have noticed his jug of secretions were markedly yellowish yesterday so I hope that we're not growing something again. I'm hoping that it was jsut an off night. Keeping an eye on fevers and such. Keep him in your thoughts please.
TodayHi my little booger boy. Mommy is tired but I thought I would give a quick update. We had a feeding tube plug last night at 1 am. I now have your tube very weak but I have it all taped up so that hopefully it will last a while longer, barring any more plugs. I worked and worked and worked on the sucker for 45 min and daddy cleared it in like 5 min. Darn ole daddy. I loosened it for him. GRRRRRRR. We have the worst luck with this tubey. I'm going to ask about a different one tomorrow. I dont know if they will go for it. . . . . . The sma community lost another angel. Our hearts are with little Braden's family today.
TodayAunt Suzanne's wedding was yesterday. Although Cole was not able to attend he was not far from everyone's thoughts all day. Suzanne looked just stunning. Just stunning. I found myself close to tears on many occasions. I am so thankful that I was able to spend the WHOLE day with them and share in their special day. Everything went off without a hiccup! Well, only a few SMALL ones anyway, like when our mom lit the Unity candle. She was making sure that this unity was HAPPENING!! It was really funny. Katy decided that she didn't want to walk down the aisle and when she was tired of taking pictures she said, " I don't want to, thank you." She looked so cute! I left before Noah passed out at the reception with his head on his ring bearer pillow and my sister Missy (his mom) put an empty wine glass in his hand and took his picture! Too cute. Mom said that she won't think that this is too funny later in life. Although it was a rainy morning, the day turned out not raining, over cast, but not raining. At the end of the day there was even a beautiful sunset. Aunt Suzanne and Uncle Justin, we wish you a lifetime of love, happiness and joy. (and cousins too!!)
TodayOh my little mister. Mommy thinks that you are the most beautiful baby in the whole world! Tomorrow is your crazy Aunt Zan's wedding. You are staying home with your dadda all day. I cannot believe I'm letting my boys have the run of the house for a whole day. No wild partys!! Please be a good boy while mommy goes to the wedding. Although I know Aunt Zan is very sad that you cannot go to, we know that you will be there in our hearts and never far from our thoughts. -- mommy
TodayLinda's (of Cole's quilts Linda) son John is hosting a battle of the bands concert tomorrow night to benefit SMA support Friday night. Here's an email I received from her... ""My son is hosting a Punk Rock event tomorrow night to raise money for SMA Support!! This is his National Honor Society project. There is supposed to be 11 bands!!! My ears!! I just have to remember that this is for a good cause!! So needless to say, I will be off from work tomorrow getting the last minute things together and getting the church hall ready - yes - it's in the church hall!! Pray that nothing gets broken. I think I am overly nervous!!"" I am so honored and proud that her son had chosen SMA to be the focus of his service project for National Honor Society. Linda says that it was not her influence and he chose it all on his own. Please say and extra prayer that everything goes off without a hitch and that the kiddos behave themselves. Linda is rather concerned because it will be a lot of teens. She will be selling SMA Across america shirts at the event too!! Wish them luck!!
TodayWe had a scare this morning. Cole's humidifier was somehow malfunctioning on his oxygen concentrator and he wasn't receiving his oxygen. He dropped his sats into the 30s and he was quite blue. His nurse called us immediately which was good and we were going through the frantic process to figure out what was going on, checking connections and suctioning and we were moving him down to the floor to cough when daddy found the oxygen problem. He came back up rather quickly but it was a rattling experience for all of us. Right now I'm sitting her typing watching Dan sing to cole and Cole is "singing": right along with him. Dan looked at me this morning after all was said and done and said "I thought that was it" I said that I was scared too. But luckily it was just equipment malfunction and quickly remedied. those few minutes felt like an eternity. We are all pretty shaken, but very thankful that we figured it out quickly.
TodayHi my little punkin'neener. It's so nice to see you feeling better, smiley and comfortable again. We had quite the day today didn't we? First waking up to a HOT HOUSE and then having company in the HOT HOUSE!! We are very glad that the air conditioner was fixed without too much delay and we are EXTREMELY thankful for the visit from Elizabeth and LibbyD from the 123 stitch board on their journey back from bringing the Memorial Flag to Oklahoma. Although we were sad not to see a piece of the actual flag, the company was wonderful!! It always amazes me when people go out of their way to meet you my little man. You have touched SO many lives, more than you and I will ever know. An Angel's work is never done. Biggest hugs and kisses to my biggest boy. Mommy
TodayI love you little man. You were very very smiley and laughy yesterday. I guess you are finally starting to feel better. I just love to hear your squeals when mommy and daddy are being very silly. Daddy says that you are "a good one!" and I would have to agree. You are the bestest!
TodayHere's the update for Tuesday. Although we were running a little bit of a temp today I think that Cole is feeling better today. This is the first Non grouchy day we have had in a week! Yeah Mr. Cole!! He was even smiling today. I said was talking on the phone to "Aunt" amy and said that Cole marches to the beat of his own drummer and then I said his drum was the bongos. Every time I would say the word bongo he would get a big smile on his face. I guess he thinks that word sounds funny. One good thing, he has popped through another tooth, this time a side upper tooth. (behind what will be his eye tooth) Boy that sucker is sharp and Cole doesn't really like it when I play "dentist". We are going on "oral" predinsone full time starting this weekend. We are going to use a high dose Friday and Saturday and none throughout the week and see how he does. This was reccomended by his neurologist to reduce side effects. I hope that it has the same effects as when he is on it when he's sick because he gets SO much benefit from it. We are still keeping an eye on the fevers and for any change in symptoms but hopefully this good day is a good sign. I'm going to have his nurses cut his moriphine dose tonite by 1/3 to see if we can get a good wean off of that and then I will work on getting his oxygen lower without his heart rate going sky high or his sats dropping too low. Another thing that might be interesting to some of you (maybe not but it sure is interesting to ME!) SMA will be in the NEWS this week!! Tune to your local CBS station this Wednesday night for 60 Minutes II. This week's episode features an in-depth exploration of Pre-Implantation Genetic Diagnosis and focuses on one of our Families of SMA Families, John and Cindy Whitley of Texas. John and Cindy learned about Spinal Muscular Atrophy when their son, John III, was diagnosed as a Type I. After losing Johnny the Whitley's began exploring PGD (preimplantation genetic diagnosis) with the help of Dr. Hughes. Their story is featured on the show and we hope will help educate more Americans about Spinal Muscular Atrophy. I know that this falls RIGHT smack dab in the middle of the American Idols results show, but the have pretty much sucked this year anyway, so if you are interested tune into CBS. Other than that things are going ok, looking a little better. Looking foreward to a visit from Elizabeth and Libby D as long as the flu bug has not come along on the trip with them. Hope that they are being safe!!
TodayOh sweet angel, it makes my heart ache to see you uncomfortable and know that I cannot cure you. You are such a joy sweetheart and even though you do not feel very well at all right now, one little smile from you today made my day. You are my hero little one. In my whole life I don't think that I will ever meet another person with as much wisdom, as much fight, as much love as you have. Mommy and daddy love you so much. Please feel better soon honey.
TodayOh sweet angel, it makes my heart ache to see you uncomfortable and know that I cannot cure you. You are such a joy sweetheart and even though you do not feel very well at all right now, one little smile from you today made my day. You are my hero little one. In my whole life I don't think that I will ever meet another person with as much wisdom, as much fight, as much love as you have. Mommy and daddy love you so much. Please feel better soon honey.
Today"Listen to my heart can you hear it sing. Telling me to give you everything. Seasons may change. Winter to spring But i love you until the end of time. Come what may ..........Come what may I will love you until my dying day" -- Moulin Rouge
TodayWe have been dealing with some kind of infection since Saturday and last night was by far the worst for our little mister. Even when he was sleeping his heart rate didn't get out of the 160s. He is retracting in his lungs, grunting with every breath and really looks like he feels pathetic. Mommy and daddy love you so much our little champion.
TodayThank you Marshall for sending me a rainbow today. It's just what I needed to see!
TodayWE're a CHAIN!!!!! I'm SO excited to announce that Cole's quilts has opened up in Australia thanks to a wonderful lady named Renae. The project is called Cole's Quilts -Down under!! Come check it out! http://groups.msn.com/ColesQuiltsDownUnder/_whatsnew.msnw Thank you Renae for doing this not only for our SMA children but for all those who need a quilt of love.
TodayWe want to thank "Aunt" Amy for coming all the way from Kansas City for a visit today!! What great FUN mommy and I had visiting and playing with her. I hope that she knows what an impact she has had on our lives and are grateful for her interest in me and mommy. Mommy is going to have a friend for LIFE!! I LOVE you Aunt AMY ~~ Cole (and mommy too!!)
TodayHappy St. Patty's day Mr. Cole!!
TodayTo love another person is to see the face of God
Today"Before you were conceived, I wanted you. Before you were born, I loved you. Before you were a minute old, I would have died for you. This is the miracle of life. " This quote came at the end of one of my emails that I received today. Thank you Katie. It's just what I needed to hear today. Hugs from Cole to Jack and Quinn.
TodayWe had a big surprise today. One of mommy's friends called. Mommy hadn't talked to her friend Dia in YEARS and she called today. We told her all about you and all about what has happened in the past year. I'm sure that she didn't expect such news from us. . . . . . . . . Mommy also had a little piece of heaven on earth tonite. I held you in the recliner tonite for the first time in months. You couldn't go to sleep like that, but your levels remained stable and we stayed there for at least 15 minutes. It doesn't seem like much to some, but to your momma it meant the whole world. I love you sugar.
TodayHappy Birthday Smiley Rielly!!
TodayYou are my sunshine boy! Things are looking a lot better since those darn ole teefers have quit hurting so much. Respiratory wise Cole is doing SO much better. (I'm almost afraid to type it). We have been weaning down his 02 and he's almost a 1 1/2 liters again. Clapping and coughing is going well too. We still have a couple of days of the oral steroid left and he's still on antibiotics until Thursday for the pseudomonas. I hope that he continues to feel ok. We love happy days and smiles . We have been doing this thing with his arms lately. When he's on his tummy we move his arms like he's swimming and we say "Coley swim swim swim. Swim swim swim" He smiles because he thinks that it is too funny. Silly ole bear. Mommy and dadda love you sugar. . . . . On a different note. . . Cole's quilts is in full rage. 5 quilts have been completed and Kalair should be receiving her quilt today. I hope that our stitchers know how much the families appreciate these quilts and I hope that burn out doesn't get the best of them. Thank you to all our stitchers who dedicate so many hours to helping our kids.
TodayPlease say an extra prayer for Brody Bixby. He does not have SMA but He is the son of my dear friend Amy and he was admitted in the hospital for breathing difficulties last night. I have not heard from Amy today but I'm thinking of them constantly. Hang in there B! We love you so much. Mr. Cole sends smoochies.
TodayI love you more than yesterday, but not as much as tomorrow
TodayJust thought I would pop on and give you a quickie! (wink!) Well, we've discovered the culprit of some (maybe all who knows) of our problems! TEETH!!!! Cole has 2 sharpies coming through on the bottom. The funny thing about all this is that he has his two top front teeth, and the ones coming in on bottom are not the 2 middle front, but rather the ones that match up with the eye teeth (incisors??) He's going to look like a TROLL with that big hole in the middle!!! Or an inverted vampire!! We've been calling him trolly coley all day. HE's SOOOOOO crabby and his oxygen levels are reflecting it. Right now he's on 3 liters and I tried to sneak it down a little bit and he FREAKED out. Sweating, crying and just really freaking out. We are slowly trying to wean him so wish us luck on that. 3 liters is a lot compared to the 2 he was on before. Anyway, that's where we are ! Hugs
TodayHi guys. It's been a little hellish around here. This weekend was rough, but yesterday was by far the worst. Cole is presenting differently (again) and we are just still trying to figure out what's going on. It's so hard to distingush the fine line for what is treatable illnesses and infection and what is progression of his sma. Cole is running sproadic lo grade fevers, sounds very congested when we cough him, His heart rate is not over high until he is distressed but his oxygen sats are pretty poor at times, to not so great at times to just ok, to fairly decent. We have a wide range of levels. HIs nurse called last night with a distress situation. I started doing everything in my "routine" of things to do when he is bottoming out. I had been scared to cough him because he was having such a hard time recovering from his cough treatments all day, but after things just weren't getting any better and I had done everything I could think of, I said to the nurse "Ok . . . I'm going to cough him. . . This is going to make things better or a whole lot worse." Thankfully it did help him and he was resting much more comfortably after that. I'm not sure what any of this means, but I do clearly remember that we had been dealing with this chest congestion about a week or 2 before that REALLY bad time at the first of the year. I hope we're not going down that road again. Dan works all night tonite, our nurse called in with a headache and insomnia. I did get 4 hours of sleep this afternoon when Cole went down for a nap and Dan was with him so I didn't have to worry about not hearing him. Anyway, that's where we are right now. Krisitn nad Cole
TodayOH mr. Cole you gave us a run for our money last night. Your nurse gave us a distress call. It has been a long night since 3 am for us baby boy. You are stable now and resting comfortably. I love you sugar.
TodayWell Mr. Cole!! Mommy is NEVER EVER going to brag on what a great day you had or what a good mood you are in!! You really let me have it today!! I was looking at the short end of a hissy fit as we tried to take our nap today! You cried real crocodile tears, sent your heart rate sky high in the 200s and made your sats go low. Silly boy. I rolled you back over and turned on tv and then you dropped your heart rate back into the 120s. All I can say to you, little man is , spoiled!! Rotten!!! You also would have no part of Baby bach today, a video you usually watch. You also cried for 20 min after your coughing tonight. What the matter boykie???
TodayHi my sugar boy!! You had a good day today. We received some pressies in the mail today (Thank you thank you!! ) and you even smiled at me for piccys in your new outfit. I would walk my fingers up your belly and go "doot doot doot doot tickle tickle tickle" on your necky. You thought this was pretty funny. Your mom is pretty silly sometimes huh. Your heart rate has been good the past couple of days and no fever!! Yeah!! I love you my little sugar pot. Sweet dream baby.
TodayThank you thank you for all of those people who made our Valentines day so extra special. An extra special thank you to "Aunt" Amy for the BEAUTIFUL Orchids. They are the prefect flower for the perfect boy, fragile, yet so strong. Thank you for helping my boy send them to me!! Thank you to Aunt Julie for the big boquet of balloons and for they puppy!! Cole will have a lot of fun trying to pull on that string. Thank you so very much!!
TodayHappy birthday my little angel! You are a year and a half old today!! I remember last year at this time we had a BIG party for you because we didn't even know if you would make it to your 1st birthday, but here you are . . . 18 months old today. I love you mr. blue eyes. Mommy
TodayWe went to see our pulm today. They are putting him on a different antibiotic twice daily now because he keeps getting sick. I Cemftin I believe it is called. Cole is 30 lbs now and 36 inches. The say he's in the 97 percentile for weight and off the chart for height! He's such a big booger boy. I'm actually happy that he's not gaining too much weight. He is already SO big already and everyone say the bigger you are the harder it is to move. She mentioned that one the the neuros here in town might be conducting a study on type 1s, but I"m not sure of all the details. I told her that I didn't know if Cole would qualify becasue he doesn't have any resp support, but she said in her pulm opinion she feels he would be a good candidate to study because he's not on any assisted breathing and it would be a good measure of increased resp strength. I don't know any more about it, but we'll see. She deeped suctioned him today and wanted to run a culture for pseudomonas (YEECH). He was such a trooper and didn't even fuss during the deep suctiioning. She said that Cole is the strongest, weak type 1 she has ever seen and for him to be 18 months is truly amazing. She said that he is such a fighter. I'd have to agree with her.
TodayI held it together today when I talked to our nursing service today. I told them that our nurse sunday night was a lawsuit walking through our door and the things that she did (or didn't do) were negligent and unexcusable. I am still SO mad I cannot see straight, but I think that Cole's grandparents are even madder. I told them that if anything had happened to Cole yesterday that things wouldn't have stopped at a phone call. I hate to be threatening, but this is ridiculous. I'm actually proud of myself for being so firm and holding it together. I wanted to yell and scream and cry, but knew that wouldn't do anybody any good. I did have some good things to say aobut our during the week nurse. I turned on the baby monitor this morning while I was brushing my teeth this morning and heard her talking to Cole. She didn't know I was listening and that made me smile to hear her talking to him. Then I heard her suction him and his heart rate was good and he looked very comfortable when I went downstairs. Now, If we could only get competent, consistent care with our weekend nursing.
Todaylast night I was waiting for the nurse and she was already 10 min late, well, she didn't show up until Midnight!! 2 hours late! She was brand new so we had to go over all the training at midnight and I had to stay up unitl 3 to show her how to do his chest pt in the middle of hte night, because she missed the whole routine at 10:30! But wait . . . there's more! Cole medical book is a mess because our meds change so quickly and frequently that nothing is updated. I write down for the nurses exactly what he's supposed to get and when he's suppose to get it. He was due for his antibiotic, his motrin, his benadryl and his ativan at 7 am this morning. When I got up at 7:30 the nurse informed me that she didn't feel comfortable giving the meds because the book was so messed up . . . BUT SHE DIDN"T WAKE ME UP!! If she would have woke me, I would have given them to him if she wasn't cofmfortable! It is SO not HER decision to hold his meds. . . But wait there's MORE!! This is the worst part. Cole has a special feeding tube and one port leads to his stomach and one port leads to his intestine. I always inform the nurse both orally and in writing that NOTHING is EVER EVER EVER supposed to be put in his stomach because he refluxes to severely and then aspirates. When I was about to give him his meds I realized that he was recieving all his food in HIS STOMACH PORT!!! I about lost it!! I know that mistakes happen sometimes, but this is a LIFE THREATENING MISTAKE!!! On top of everything else this was the LAST STRAW! I was too mad to call the angency today, but I'm calling first thing tomorrow.
TodayTonight is a very sad night for all of us. It is nurse Lisa's last night. We will miss her terribly and hope that the transition to a nurse will be smooth. Mr. Cole is still pretty sick and not very comfortable. He is having trouble sleeping and not taking any naps. I don't know what to do for him other than what we are doing. He started Zithromax today in addition to his augmentin and is still on oral steroid (through his g tube). Oh little punkineener we love you so much.
TodayYesterday I called the doc and they decided to start him on the oral steroid again. This seemed to help last time and sure enough, he's having a little better morning. Heart rate is down a little and he's seems less uncomfortable. All these things are good signs. Still has a fever and secretions are still really dry.
TodayThings are still pretty bad. Cole looks so bad again. It never ceases to amaze me how quickly he goes downhill. Have any of you ever heard that story about the knife over the man's head suspended by the rope? I have no idea is it's a myth or a fable or what, but I rememeber it from when I was little. That's exactly what it feels like. I look up and see it and know it's up there and every time Cole gets sick, it's like I hear another string pop lose from the suspension. Boing. I can't see the string because the knife is in the way so I never know how much rope is left from being totally frayed and send it dropping down on our heads.
TodayFor a couple of days now I've been thinking something has been off. Well today I know he's sick again. Yesterday his heart rate and respiratory rates were really high but they improved after his cough. Today he is running temps, 102 and he is moaning and beathing so hard that he's had the hiccups twice. His nurse had to up his oxygen in the night and give him ativan at midnight. I gave him another dose of ativan this morning when I got up and a dose of moriphine at 10:30. We have had a really good happy run for the past week and a half to 2 weeks after we got over that REALLY bad illness at the first of the year. I guess here we go again.
TodayOh my little angel boy. It is late here adn you are sleeping. We have had an ice storm today and your mommy is your nurse tonite. Tonite we got you smiling and (sorta) laughing on the video tape. I would pull up your jammies and say "There's your tummy" You already knew what was coming next and I would give you a big kiss or a raspberry and you would coo and laugh. I'm so happy that we have this moment on the video. What a wonderful personality you have my angel. How did I get to be so lucky. Mommy and daddy love you so very much.
TodayOh mr. Cole. Yesterday was quite the day. Your little g-j tube balloon started to dislodge and we could see it pulling through your stoma. That is something I NEVER want to see again. I tried to push it back in and that didn't work, and then I tried to deflate the balloon and re inflate it on the inside and that didn't work either. ( Now I know a better way!!) We taped it up and put an elastic band about your stomach and then called Glennon. You hadn't eaten since 4 am so at 9 I turned back on your feed. They said that they would try to squeeze you in as soon as they could and that we were to be at the hosp at 1. Around 2:30 we finally got in to have your tube replaced. It took a little coaxing but we convinced the docs that it would be in everyones best interest to just replace the tube with a new one instead of seeing if the old one would cause problems again. It's way too stressful to go to the hospital. Plus, there was a very sick child in the waiting room with us and every time he coughed I cringed. I surely hope that you don't get sick my little mr. Cole. Mommy should have remembered to bring that face mask for you, but she didn't. Since you missed your nappy yesterday you slept till 10 am today! You were exhausted little one. I wish it were not so scary to take you out. You just LOVE to ride in the car and in the stroller. As long as the stroller kept moving you were contented. I hope that the tubey stays put and we don't have to go back there any time soon. Big hugs from mommy. Kisseys too
TodayWhat a good day you had my little bee!! Lots of smiles and even a laugh or 2! You just LOVE raspberries from your daddy! His mustache must tickle you because you start squealing even before he gets close! Mommy loves you so very very much. I wish that I could make everything easier for your my little champion, but you are so very brave. Thank you for teaching me so much. I love you sugar booger. ~~MOMMY
TodayPlease keep Connor Reilly in your prayers today. He is scheduled to have a surgery to place a trach today at noon.
TodayHappy happy 17 month birthday Mr. Cole. We LOVE you!
TodayCole had a really good weekend. He was smiling and having a good time with his Grammie. It is amazing to me that it was just 1 week ago that he first woke up from his drug and illness induced sleep. It seems like so long ago. I am grateful for my little man and look foreward to playing more and more games of "Poke Mommy's/Daddy's nose" This is his favorite game. He will life his finger when he wants to play again and again. I know that it takes so much energy for him to even lift his finger, but he will smile and point for us to play this game with him. He is so smart. I am so happy that you are feeling so much better little one. Mommy and daddy are trying their very best and we love you so very much.
TodayCole was smiling and singing this morning. He really seems to be feeling much much better. We have yet to cough this morning (his neb is running right now with the mucamyst and the xoponex) but hopefully we will be able to get something out of him today. I still hear crackels in his right lung but his secretions seemed a little more today and a little thinner too. We continue to keep up with big water flushes and he has NEVER been dehydrated during this whole thing. We have a call out to the doc to see what the best way to wean him off his moriphine and ativan without getting withdrawals. He is still on 2 antibiotics and on an oral steroid until tomorrow and I guess we'll just have to wait and see if he continues to do well or if these crackles develop into something else. Thank you for all the phone calls of support and for all the candles and all the prayers. Most every one has been wonderful about respecting our decisions.
TodayJust when we think that all hope is lost, Cole has a fairly good night. I was up with him all night with a new nurse. His heart rate was lower on his good side than it has been since Tuesday and he was satting much better. Even tho he was on 2 liters of oxygen still, we didn't have to bump him up at all last night (21/2 -3 ) which has not been the case since Tuesday. We are still continuing to agressively clap and cough and he is having some secretions up this morning and we got a little up with the coughing, which we had not been able to do either. He still doesn't have any drool or saliva which is really really strange. I think the Zithromax is helping with the infection and his temp has been down for almost 24 hours. He has been awake this morning and wanting to watch tv, despite the moriphine and ativan dosing. We think that this is a good sign because he's been in pretty much a constant sleep since Thursday. I don't know what all this means exactly but hopefully all are good signs.
TodayThings haven't changed much over the past 24 hours. His secretions are still very dry and tacky. I never ever thought that we would ever want increased secretions, but with as thick as they are there is no way that he will ever move them. His nurse last night was late 50 minutes (again). Not that I had any plans of going up to bed anyway. I kept my vigil by his side last night and Dan has kept it for today during the day while I sleep. We have another new nurse tonite so we will repeat this tomorrow. I hate to see him so uncomfortable but we know that we are doing the things that we think are best for him. I love you little man.
TodayThings are still very very bad. They are adding an oral (g tube) steriod instead of the pulmicort because the said that it would take the pulmicort too long to be affective ( a week) We continue with the mucamyst treatments and the agressive coughing. We still are not getting anything up. Things are so thick and tacky and junked up in there at nothing is affective. HE has NO secretions when he's ususally lying in a pile of drool. It's so alarming. We are also starting zithromax in addition to his agumentin. All I can think of if thank goodness we did not start the ribinol. if his secretions were thicker than they are right now I don't know what we would do. Thank you for all the candles and prayers. Please keep them coming as things are very bad K
TodayOH Mr. cole. . . There are candles burning bright all over the world for you little angel. Please do not be afraid little one. When you see tears in your mommy's eyes, know that they are there only because I love you so very much.
TodayToday is new years day and our 4th anniversary. I wish that I could say that it was happy, but I believe Cole has pneumonia. He is a very sick boy. He has been on Ativan and Moriphine around the clock for the past 24 hours. There are no secretions to suction, he is very tight in his lungs, crackly and we cannot get anything up with the cough machine. My little man is getting tired.
TodayMerry Christmas Mr. Cole. Mommy and daddy are so happy that you are here to celebrate your 2nd Chrismas. You are such an inspiration to me, little man. You have taught me so much and have given me so much. I hope that I give even half of all that you have given me back to you. I love you so much little one.
TodayToday is a sad day. Today is the angel day for Marshall Daniel Mo Potter. One year ago he earned his glowing wings and soared beyond this earth. His mom and dad have become so very dear to our family and although I have never met Marshall, I feel as if I knew him all along. God Speed Little Man. May your golden glow always shine on in the hearts of those who love you
TodayMr. Cole had such a good weekend. He was in a good mood and was very smiley at his grammie. We celebrated Christmas with my parents and really had a good time. Grammie over did it as usual. We sure do appreciate it tho. Our printer went kapoot so we had my christmas present a little early too. I'm having fun playing and printing now without having to re boot the computer each time I want to print a page! For all of those who I don't get a chance to talk to . . . I hope that you have a safe and merry christmas and happy new year.
TodayWe were supposed to take Cole to the doc yesterday for a check up. This is alwyas a big deal when we leave the house because the followint things always have to go with us. . . Suction machine ,, Pulse Ox, to measure his oxygen levels ,, Oxygen ,, Feeding pump ,, Diaper bag ,, and MONSTER special needs stroller ,, AND Cole of course. Anyway, since we never go anywhere, we don't have a coat that fits him this winter or a hat. So, we decided that we would just bundle him up in a big downy blaknet for going outside. Well, I called the day before to verify my appointment and get directions. It was at a different hosp than we usually go to. First we didn't know where to park, went in the wrong building, our blanket blew off him and we finally got up to the office and our doctor was AT THE OTHER HOSPITAL! I am a pretty level headed mommy, but I about lost it. So, we had to get everything together again and go to the other hospital. Cole did really well in the car. He likes to ride thank goodness. Our doctor always seems amazed that he has made it to another appointment. She says that he is weaker and weaker every time she sees him and commented on how hard he works to breathe.
TodayMr. Cole is feeling pretty good today!! His heartrate is much much lower! And he hasn't ran a temp for about 30 hours. He's singing to his daddy and if he wakes up in a good mood after his nappy and after his bathy we are going to take some christmas pictures!! (Some MORE christmas pictures that is!) He's such a champion. Thank you for all the happy thoughts and prayers. Kristin and Cole P.S. Don't forget to light your candle for an hour tonite at 7 p.m. in your time zone in remembrance of all the children who have become angels. Thank you!
TodayMy angel boy is 16 months old today. It has been a rough week and my poor little guy is having a tough go of it. I cannot believe how big you are little angel. Your mommmy and daddy love you so very much! Big hugs and kisses. Happy day angel.
TodayI don't know why I'm prone to make journal entries on the days that Cole is doing poorly. Maybe it's because on the days that he's feeling good, I spend as much time with him as possible. Maybe it's because when he's not doing so well, I'm looking for a place to talk it out, maybe just to releive a little stress. I don't know why. Anyway, Cole took a bad turn yesterday, running high temps. Today his sats keep bottoming out, especially after he just first wakes up. He's back on antibiotics and hopefully they will kick this thing soon. Poor little pumpkin pot. I did get to hold him in the recliner chair today which we havent' done in a LONG time. I just held him and held him and held him. I smelled his stinky sweaty head and held his hand. I love you so much little Bee. I hope you know how much.
TodayI cannot believe that tomorrow is Dec. 1st. Thanksgiving has come and gone. I am thankful for the beautiful angel that is lying on the couch watching Veggie Tales (at 9:52 pm!) He has taught me so much in the past year about the person I want to be. I am thankful that he has shown me what is important in my life. We are looking foreward to Christmas. It will be a little different this year. No big parties, not big fuss. We have Cole's tree up, right by the TV. He really likes to look at it. Today we had a visit from Mia's mom, Stacey, her son Dylan and her sister. I am always amazed how comfortable I feel with the SMA mom's almost instantly. I always get a little nervous, but within seconds it's just like I've know them for a long time. Thank you Stacey for the visit and for all Cole's presents. We read the book tonite. I think that he liked it. Also another first for Mr. Cole. He watched Finding Nemo today! The WHOLE thing! I couldn't believe it. It might have been a fluke, but mommy enjoyed watching something other than the crazy pickle! I love you little Mister! Mommy
TodayMr. Cole is feeling a little better I think. He is still really pale, but his high temps are reduced to low grade temps to no fever now which is good. We had an uneventful Thanksgiving (breathe sigh of relief), which is much better than the day before when both his nurse and I were ready to cart him off to the ER. Thank goodness that his doc called him in antibiotic. He tested negative for Rotovirus (yeah!) but his poopie still isn't right either. Not sure what's up with that. (I'm sure you ALL want to hear about this huh!!) I had to go to the medical supply store today which is over 30 miles from my house to buy Cole some sponges to swab his mouth and some new syringes for meds. I was so aggravated because I called before I left the house to see if they carry the type we use. They said they did. So I asked for directions and drove to the store. When I got there they (dumb) lady said to me, "Oh, we carry them, but we dont' have them in stock!" DUH!! Did she think that I was taking a survey? I had to drive an extra 15 minutes to a different store to get what I needed. I did stop by Joannes and bought 30 more flosses for my collection. (limit 30 you know!) I figure if I buy 5 or 6 dollars every time there is a sale, I'll eventually get them all. I'm going in order down the list, and it erks me when it's a color that I KNOW I won't use very often or ever! We put up Cole's christmas tree today, right by the TV. Mom bought us a new one, a slim one so that we could have it downstairs in the TV room. It looks so wierd to me because we did it TOTALLY different than the one that is supposed to go upstairs. Tomorrow we are going to give Mr. Cole a bath and try to take some family pics in front of the tree (permitting that it is a good hair day!)
TodayOh Mr. Cole. Tomorrow is Thanksgiving. Your Grandma and Grandpa Webb are coming in from Wisconsin for turkey day. I am sitting here, listening to you grunt. You are very sick this week baby boykie. You have been running temps and are very uncomfortable at the moment. So uncomfortable whenever I try to rub your back or lie next to you, your heart rate goes through the roof. We almost went to the emergency room today, but your doctor called in medicine first and told us to watch you for dehydration. You haven't slept all day. Oh my little man. Why does everything have to be so hard for you. Your strength and spirit have made you the bravest little boy I know. And although I thankful that you are my little boy, I cannot help to be a little sad and resentful for everything that you have had to endure this past year. I love you little man. Mommy
TodayCole's Cross stitch designed by Sue Hillis is now available for purchase. You can buy it at www.123stitch.com . It is item # L199, or you can just proceed to check out with this link. . . http://www.123stitch.com/cgi-bin/cart/cart.pl?action=add&item=L199. .. This is such a beautiful piece with our poem on it. We are so honored for Sue to design this for our little angel. There is also info about SMA on the back as well as contact info for FSMA. Thank you Sue for doing this for our little man.
TodayCole's Grandpa is out of surgery and they said that they didn't run into any problems but they said the first 24 hours are critical. I always have the possiblity of stroke in my head because of where I work. (PT) I just hope that everything goes ok. I really miss my mom. It's been 4 weeks sinc I've heen her because of circumstances and illness (she had a cold) I guess it will be a while now before she can travel. I wish that I could go visit dad, but we know that it is just impossible. Kristin
TodayCole's Grandpa Linhardt (my dad) is in triple bypass surgery right now. He went in for a cardiac cath this morning and they found 100% blockage in the posterior heart, 95% blockage in one of the arteries in the anterior heart and 75% blockage in the other one. They decided not to wait and to send him to surgery today. They also found that he had suffered a heart attack in Feb of last year. I'm very worried. I guess a lot of it stems from working in PT for so long that I immediately think of the complications. Sending prayers up for Grampie.
TodayI got to have a sanity break on Friday and I went to a cross stitch shop that was fairly close to my house. I had never been to a shop that was soley aimed toward cross stitch before. I was talking with the lady who works there about Cole and about his quilt project. I was looking for something new to stitch on one of the SMA quilts. Anyway, I picked up the 123 orchid and told her that this was the message board I belong to and LO AND BEHOLD Orchids for Cole was sitting right underneath. I burst into tears right in the shop and made a complete fool out of myself. I then had to tell her about Marc and Cole's orchid and all the wonderful things he has done for our family. Still crying, I had to leave. I don't think I'll be going back there any time soon.
TodayMr. Cole has been up and down here for the past couple of weeks. Unfortuantely he's been more down than up. He had a bad night last night and had to have doses of his harder meds to help him be comfortable. He seems a little out of it today and his sats aren't great. We gave him a bath this morning because he was super stinky. We have been calling him Kramer (like in Seinfeld) because his hair is so long and so curly. Sometimes dan and I talk about what he would look like if he was running around our house. We think his hair would be even curlier if he was bathed every day and he didn't smash it down on the couch all the time. I have always wanted a boy with curly ringlets, and I got my wish. Anyway, Kramer is going to get his first haircut tomorrow at 2:30! We are looking foreward to it because it really is LONG. I think he's going to look so OLD with his new do!
TodayHappy Birthday Little Big Man!! We LOVE you!! 15 months old today!!
TodayWell, we took Cole to have his feeding tube swapped out at Cardinal Glennon today. He is such a trooper. He LOVES to ride in the car and LOVES to be on the go. I wish it weren't so darn exhausting to do so and I wish that we weren't so darn fearful of germs! All went very well and he passed out when we got home at 3 and has been asleep ever since. I guess our sleep schedule tonite will be WAY off since he slept until 10 am this morning!! Oh brother. I hope that we can keep this one unplogged for a LONG time and we won't have to go back to the hospital for many months. (3 at least this time) He really did a good job and was rather flirty with the pretty nurse that was at his head. I'm so proud of him. Some bad news, our hospice doctor is moving to Lacrosse, WI in January. We HATE HATE HATE to see her go since she has been such an asset to us since all this happened. I hope that they get a replacement for her who is as helpful to us as she has been. She has ALWAYS been available to us, not matter what time of day and ALWAYS calls us back so quickly. Oh well, such is life I guess.
TodayMr. Cole has had a rough day. His temperature is back and his heart rate is high. We are starting him on Robitussin doses to see if we can get some of that stuff in there broken up and coughed out of him. The chest PT and cough machine alone isn't doing the trick. We gave him a bath tonite even tho he had a fever and he seemed to be a lot more comfortable (and a lot less stinky) after. We are giving him his evening nebulizer and are gearing up for another chest PT session and coughing. He is so much worse after we do these things but I know that we need to try to get that crud out of there too. It gets him so worked up and mad. Today if Vetran's day. I would like to give special honor to all the people who so bravely served our country and protect our freedom on a daily basis.
TodayIt's been a tough weekend for Mr. Cole. He has had a lot of congestion in his chest and has had some very uncomfortable moments, uncomfortable for both him and mommy and daddy. I don't know if he's getting sick or if this is just his lungs not being able to handle all the secretions. He has had TONS here in the past couple of days. On a happier note, Cole has had another cross stitch leaflet designed for him. It has not been released yet, so I will keep the details hush for now, but I can say that it is just BEAUTIFUL!! I have already stitched part of it for a quilt block for a little one who passed away from an accidental drowning and It is just too precious.
TodayWe've had some disappionting and devastating things happen in the past couple of days. Without going into a lot of detail, things are getting a little rough emotionally around here. To put your minds at ease a little bit, these things do not have to do with little Cole. Actually he is doing pretty well. His heart rate has been lower lately and he is feeling much better. Sometimes it's so hard to be strong. It's so hard. I wish that there were some magical thing that would make things all better, but we all know that those things are just make believe.
TodayCole is feeling much much better. He had a GREAT weekend with lower heart rates and lower temps. I am so happy the antibiotic did such a good job this time. It just breaks my heart when he's uncomfy and none of the meds (even the hard core ones like moriphine) aren't making him feel better. I feel so darn helpless. Today I gave Cole a bath all my myself in the wrapping paper tub. I haven't bathed him by myself for about 4 months now. We actually managed ok. After our bathy we put on a new outfit that I found for him with the ST. Louis Blues bears on it. He looks so darn cute today!! I love you Mr. cole
TodayCole is getting something again. It's been a bad day as far as heart rate and he has a temp again (101) He's going back on the antibiotics sometime tonite as soon as I can go and pick them up. Here we go again.
TodayWhat a busy weekend. On Friday night I attended a benefit in honor of James Patrick Giroir for Families of SMA. What a wonderful event!! Official totals are not in yet, but I have heard that they raised ALOT of money that night!! It was so wonderful to see Catherine and her sister and mom again!! I also met a local family with a little girl with type 2. Their little girl Tori is SO sweet!! Cole's grammie and grandpa webb were in town this weekend and Cole always enjoys his grandparents when they come to visit him. Lots of spoiling going on!!
TodayI'm so proud of my little man! Yesterday he got 2 synagis shots for RSV and he didn't even cry!! He looked offended, but didn't cry!! Mr. Cole you're so brave!! Kristin
TodayWe took Cole to the lung doctor today. It is always difficult traveling with him. To paint a small picture of what this looks like . . . His stroller is monsterous and takes 2 people to lift it into the back of our SUV. It lies flat so that Cole can lie flat. If I had a good picture I would show you, but I don't think I have one. Plus the equipment we have to bring includes . . . oxygen tank, suction machine, pulse ox, feeding pump, and diaper bag. We look like the Clampets arriving at these appointments! Just traveling is always stressful on Cole and he has been pretty pooped all afternoon. His levels are a little lower but hopefully nothing to be concerned about. The bad news is that Cole's lungs sound much more diminshed. I think that every time our doctor sees Cole she's just amazed that he's even here at all. They took blood from him to check if he's anemic from lack of iron or and a blood gas at the same time to check his carbon dioxide levels. We haven't heard back from the results of these tests yet. She also agreed to put Cole on supplemental Tolerex, which is an amino acid formula that a lot of SMA children do very well on. I do not want to stop pumping for him, but he needs more than I can produce. This is good news about the formula. Cole is a big big boy now. . . 28 pounds 14 ounces and 36 inches!!!! He's 3 feet tall!! I just cannot believe my BABY is so big! Anyway. . . That's all we know for now. Kristin
TodayToday is a sad anniversary for us. One year ago our blood tests came back and it was definite that Cole had SMA. I remember this day as if it were yesterday. I do not remember what the doctor said because I don't think I heard anything after "I'm sorry". Cole had a nasty infection last week and was a pretty sick little man. He came off his antibiotic on Sunday and he's feeling much much better. He really is an amazing little man. Dan and I commented just today that one year ago today we never thought we would be buying another halloween costume for him. I'm keeping it a secret just yet because I haven't decided exactly what it's going to be. . . but we will take a lot of pictures.
TodayCole had a visit from Miss Kalair today. He was in much need of a nap and was not in particular good humor today. He was really not thrilled when we blocked his view of the tv! Silly Coley! Tomorrow he gets his first synagis shot of the season. I hope that all goes well and he's not too grumpy for the rest of the day. I'm so glad that he's feeling better. Last night his (insert bad word of choice here) j tube plugged up again. If it plugs again the tube will be shot. It has a weak spot where it was ballooning under the pressure. Hopefully we can keep it clear for awhile.
TodayMr. Cole seems to be on the upswing!!! (My little man is amazing isn't he??!!??) He has been fever free for going on 3 days now and was even smiling at dada this morning!! His zithromax ends today and his antibiotic dose is ending late tonite. We are scheduled to see his lung doctor on Wednesday. I'm so happy that our little guy is feeling better. Last week was a rough week for everyone.
TodayHappy birthday my little man. 14 months old today!! WE LOVE YOU
TodayHappy birthday my little man. 14 months old today!! WE LOVE YOU
TodayOur nurse last night was a no show. I called at 11:30 and asked them if they had any idea where she was. Of course they didn't and the nurse claimed to get the nights mixed up. Well midnight on a saturday is impossible to find coverage, so mom did the whole night solo. To say the very least, I didn't get much sleep and Cole woke up really early. Thankfully we get nurse Lisa back tonite and Monday I'm going to make my weekly petition for her to have her 1 day of overtime on Sundays.
TodayI would like to extend a HUGE thank you to the stitchers of 123 stitch and especially to Robin for all your generous donations to help our family. I feel so at home on the 123 board and have received so much love and support there it just feels like home. Thank you all.
TodayI would like to extend a heartfelt thank you to Marc Sastaad, the creator of Orchids for Cole, a cross stitch leaflet dedicated in honor of my little man and his generous donation to our family and to Families of SMA. Your kindness will never be forgotten.
TodayMr. Cole is sick again. Last night we had to call the on call doc to get him started on antibiotics. We talked to the NICEST doctor there. Usually when I say that Cole has SMA they automatically close down and tell me that he has to go to ER. This doctor was SO NICE. He called in the meds and also said that if I needed ANYTHING in the night that he was on call and not to hesitate, even if it was just to talk. Can you believe it? A doctor said that!! Cole still has a temp today but his sats are a little better after his after noon nappy. He is unusually dry as far as secretions and have had to do A LOT of saline nebs today in addition to his xoponex. Daddy is home now and trying to get him to go nite nite, but he still isn't falling asleep well. Feel better soon little man.
TodayWe wanted to extend a HUGE thank you to the SIFE (Students for Free Enterprise) alumni of Lincoln University, to all the business and individuals who donated items for the silent auction, and to all those who attended the fundraiser and so generously participated in the auction. We are proud to say that our first fundraiser earned $4200 for Families of SMA. All our love
TodayHeaven gained another angel. . . Nathan Mckenzie was only 1 day shy of 7 months when he joined the other angels in heaven. Please remember their family in your thoughts and prayers.
TodayCole was in a very good mood yesterday. I was blowing raspberries on his tummy and if he had enough strength to laugh I think he would have. He has a little case of the poopies today which is making him not feel very good today. Oh Mr. Cole. I wish you had smiley days everyday. Hugs and kisses from mommy
TodaySending a prayer up for all the little ones struggling right now, especially Connor, Nathan, Leo and Nicholas.
TodayOne year ago today ~ We were sent to the emergency room with Cole because he had lost his reflexes and he was "floppy" At this point they had not mentioned SMA to us, and they sent us home from the ER, only to be admitted to the hospital the next day. One year ago today ~ our nightmare started.
TodayMr. Cole is having trouble sleeping. I cannot figure out what is making him uncomfortable. He is really restless and acts like something is bothering him. It's so hard to know what to do for him when he is like this. His oxygen levels are stable and there isn't anything obvious that I can see to know what to do. I just feel so helpless. Oh little man, mommy loves you so very much. Hugs and kisses.
TodayIt's been awhile since I've updated and we've been asked how Cole has been doing lately. We have had up and down days with fussiness. I think he's finally licked the infection that was growing in his lungs. The collected secretions are clear now and he has not had a fever for 3 consecutive days. It's so hard to tell sometimes what is a SMA thing and what is a normal baby thing. He continues to have fussiness but we are wondering if it just might be something else. We received an outfit in the mail the other day from a family in Mexico with at cross stitched precious moment angel on it. We put it on Cole and he looked SO cute in it. We took some pictures but he didn't feel much like smiling. He's sometimes stingey with his smiles. Other than that, things are just kinda "normal". We have our little routines and schedules that we stick to. If we get off schedule, my whole day is whacked, so we try to stay on schedule as much as possible. As we approach flu and cold season we hold our breath hoping that we can make it through the winter without any major mishaps. On days like this we are hopeful that he will with us for a long time. We know the statistics and we know that things can change in a second, but we just treasure all the time we have gotten to spend with our little man. He is such a treasure to us. He is so brave and such a fighter. He is truly my little angel.
TodayDearest Baby Boy ~ Today is your birthday. 13 months ago you arrived in this world. We love you so much our little one. Words cannot even begin to describe how much we love you. You are my hero. You have so much inner strength. You have so much fight. You have so much courage. I have learned more from you in 13 months than I have in all 28 years before you came in our lives. Thank you for being my little one. Thank you for your smiles for your mom and dad. Thank you for the sparkle you so often have in your eye. You have touched SO many lives. More lives than I could ever count or ever really know about. I love you "Little Big Man". Happy Birthday. Mom
TodayLinda is working hard to get Cole's Quilts Project - Creations Of Love Etc. up and running. I posted on the SMA support email group today and we have already had many requests for quilts for their SMA children. I personally think that this is an AWESOME thing that Linda has taken the time to do. Laura is working on a website to link the requests and sign up for the quilts, but it isn't up and running yet. It's so wonderful to see all of my beloved stitchers excited and talking about SMA. These quilts are truly priceless and I know that the families will treasure them always. Thank you to everyone who had a hand in this project and the inspiration and dedication to make it work.
TodayAfter having several very very fussy days, Cole was in a pretty good mood today. He broke the skin of Goofy Toofy #2 today (Could this be the reason that he cried for 2 days??) It was a relief to have my smiler back today. We sang the "Eerie Canal" song (cole's new favorite song) so many times today, I can't get it out of my head. We are still adjusting to his new feeding tube. His port keeps sliding out and we've ended up feeding the couch several times this week. This is beyond annoying. We have 2 different adapters on order, hopefully that will help. No amount of tape is working for us. Grammie Linhardt has been in town for the past couple of days, extending her weekend visit until Tuesday. This has been a great help to baby Cole and mommy, since Dan has been super busy this month with work. Grammie and Grandpa Webb arrive Thursday. Yeah!! More spoiling from the Grammies!! We have had such a wonderful response for Orchids for Cole. Joanne said the requests for them have been overwhelming. Thank you Marc again. Your "Little Big Man" loves you!
TodayBaby Cole, Mister Cole, Baby Boykie ~ ~ He’s the sweetest thing ~ ~ The sweetest thing you’ll ever see ~ ~ He loves bathtime ~ ~ And being held by mom and dad in the recliner chair ~ ~ They cuddle up in his quilt made by people who care ~ ~ Cole is such a wonderful, wonderful little boy ~ ~ And he fills all of our hearts with joy, so much joy. ~ ~ Mister Cole, you are such a miracle ~ ~ Everyday’s a gift from God ~ ~ With all the smiles that you have ~ ~ Brought to our lives ~ ~ It’s no surprise that we love you so ~ ~ And we’ll never let you go ~ ~ ‘Cause you’ll always be ~ ~ Mommy and Daddy’s little angel ~ ~ Beautiful little angel ~ ~ Baby Cole, Mister Cole, Baby Boykie ~ ~ He loves to watch Veggie tales on TV ~ ~ He loves it when ~ ~ His grandparents come to visit him ~ ~ And his dog Loki always makes him grin ~ ~ Cole is such a special, special little boy ~ ~ And he fills all our hearts with Joy, so much Joy. ~ ~ Mister Cole, you are such a miracle... ~ ~ Cole is such a one of a kind, one of a kind little boy ~ ~ And he fills all of our hearts with joy, so much joy. ~ ~ Mister Cole, you are such a miracle... ~ ~ Their beautiful little angel ~ ~ Sweet, sweet little angel
TodayToday we received Cole's Song of Love, written especially for our little man! It is beautiful! Thank you Jenny Case for writing it for our little man. We will cherish it always!!
TodayPerhaps they are not stars in the sky... but, rather openings where our loved ones shine down to let us know they are happy- Eskimo legend
TodayCole refluxed his meds today. We had been instructed to put his meds into his gastric port, but now we question that decision since he spit up all his tyenol and dropped his sats and had to be coughed. I have to call the doctor on monday to see what the next step is for this. All his meds can be put in the j part of his tube into his intestine, but the antacid parts will have no benefit from being placed there. . We received some exciting news today. A cross stitch designer of Silver Lining Inc, Marc Saastad, has designed a cross stitch especially in honor of my son. It is called "Orchids for Cole" I have not seen it yet, but I have heard through the grapevine that he is mentioning SMA somewhere on the leaflet and therefore, bringing more awareness of the illness that steals so much. Thank you Marc for such a generous act. It is truly appreciated.
TodayBad news. . . Bad news. . . and more Bad news. . . So much has happened in the past week. My head is just spinning from it all. I just cannot figure out for the life of me why some people just cannot win. Why some of the most caring and wonderful people I have ever met have such bad things happen. I cannot understand. Everyday Dan and I watch trash TV and talk shows and everyday they have so many women on there, wondering who could be the father of their children . . . 2, 3, 4 different children, 2, 3, 4 different fathers. they can have as many as they want. All of them unexpected. Why do good parents have such a hard time? How is that fair?? I'm just venting now. This is really more for me to work out, rather than much public information.
TodayWell, after a few little quirks this morning, Cole's new feeding tube is placed. The actual procedure went extremelyl well and was very quick. It took us longer to pack and unpack the car than it did to get the tube in the right spot. Hopefully it will stay put and we will not have any more episodes of reflux. Right now we are on a very small amount of food and working our way up in 6 hour increments to his normal feed amount. Hopefully all will continue to go well. Thank you for all your support and prayers.
TodayToday we gave Cole a bath. After he was all dried off, his hair formed a mass of curls, right in the back. He was lying on the floor with his hands up by his ears and was touching his curls with his plump little fingers. Please, God, never let me forget moments like this. I love you Baby Cole... Mommy
TodayToday is the day of Cole's procedure. We are having his g-tube changed to a g-j tube. We are told that this should stop the reflux that is making him so miserable. They say that the procedure is fairly simple, low risk and minimal discomfort. We are hoping that everything goes smoothly today and that he is more comfortable after this procedure. Please say an extra prayer for our family today.
TodayLast week was Cole's worst week to date. He started to perk up Saturday evening and had a pretty good day on Sunday. It's too soon to tell what today is going to be like. On Wednesday we are revising his mickey button and inserting a g-j tube directly into his intestine. They say that this will stop his dangerous refluxing. We hope that the procedure is quick and easy. They say that there is not pain in volved and it should be pretty easy to do. One of the draw backs of this new tube is that he will have to be on continuous feed, but we have started that anyway, and sometimes it doesn't stay put, which he would have to go back to the hospital to have it replaced. . I am still quite shaken by the loss of baby Joseph. I just cannot get this sweet angel out of my mind. Please keep their family in your prayers. I can only imagine what they are going through right now. . I learned through Laurie Potter that we lost another SMA angel named Mia. She was 15 months old also. Too many babies this month. It just breaks my heart.
TodayHeaven gained another angel last night. Baby Joseph Jean joined his SMA brothers and sisters and is now leaping and running in heaven. I talked to his mom today and my heart is just breaking for them. We love you Baby Joseph. Please watch over your mom and dad and big sister and keep them safe. Please watch over Baby Cole and let him know that when it's his time, it's ok to come and play with you.
TodayThe stitchers who made Coles quilt and everyone who sent him a birthday card to mom's house have touched yet another life... My mom called tonite and she said that the mail man came across the street to talk to her today and told her that it was an HONOR for him to deliver all Cole's birthday cards to her house. He said that he has never seen as many cards, letters and packages delivered to one person and from so many different places, so many countries. This made my day.
TodayHappy 1st Birthday in Heaven James Patrick.
TodayCole is having a little better day today. I'm trying not to think one way or the other about all this. If I think he will get better and then he doesn't or if I think he won't get better and then he does. I'm just trying to take it one hour, one minute at a time. He was able to tolerate lying on his back today. That makes us a little happier. He has not been off his tummy since Sunday morning because of breathing issues. He still looks very tired and very sick, kinda out of it. He hasn't had Ativan since yesterday afternoon tho, and his heart rate seems lower today. My friend Lorraine, Mom to Jimmy, SMA type 1, just had a newspaper article on her beautiful boy. If you are interested in Reading about him, please visit... http://www.our-sma-angels.com/jimmy/jimmys_story.htm Jimmy's story!
TodayHappy Birthday 3rd in Heaven Dear Andrew Fimbel. Andrew Richard Fimbel August 26, 2000 - February 17, 2001 To learn more about this precious angel please visit. . . http://www.our-sma-angels.com/andrew/ or to help with Andrew's Toybox, a non-profit, tax-exempt organization dedicated to providing special care packages filled with toys, crafts & books to children with life-threatening or chronic illness, visit www.andrewstoybox.org
TodayHeaven gained another angel~ Last night Wayland West joined the other SMA angels to run and play in the clouds. Marshall, James, Charlie, Mia, Andrew and all the other SMA angels, please show your new brother the ropes of heaven and keep him safe. Please keep their family here on earth in your prayers during this difficult time.
TodayMr. Cole has had a pretty crummy night. He was up until midnight, restless, uncomfortable and unable to fall asleep. He is still asleep for right now (thank goodness). I talked to his hospice doctor around 9ish last night. We tried to call her earlier that day but she was at her vacation home in Cuba (Cuba Missouri, not cuba country) but she called as soon as she heard. We discussed upping his Ativan even more, the pros and cons of starting the moriphine, and the pros and cons of getting a different feeding tube that will by pass his stomach and hopefully take care of the reflux issues. I have more and still more calls to make this morning, but am really dreading getting the ball rolling this morning. I have to call his nursing service and complain about the imcompetence we experienced this weekend, and call his pulmonary doc and let them know he aspirated yet again. Oh heavens, It's going to be a day. Please keep our family in your prayers. Pray that we make wise decisions and that Cole will do what is best for him
TodayI spoke too soon. Cole spit up this morning. We had to up his oxygen again and the cough machine hasn't seemed to help. We are giving him a break and plan to cough again later this morning. Cole is back on the antibiotics. His nurses for newborns came over this morning and said that he sucked the milk into both of his lungs. He is still on higher dose of oxygen and cannot tolerate any postion other than his stomach. They increased his dose of Ativan also to keep him more relaxed. Since it is Sunday, I have not gotten to talk to any of his doctors, only their on call staff, but luckily they were willing to treat him over the phone and did not make us bring him to the emergency room and expose him to even more bugs. Again, we keep praying. Some days I don't even know what I'm praying for. I pray for him to be comfortable and for what is best for him, but in the same breath I beg God not to take him away from me. Just thought I would let you know
TodayCole continues to do pretty good the past couple of days. We had our last dose of antibiotic on Friday morning and hopefully the nasty infection is licked. He was pretty smily at daddy this evening and even stayed up way way past his bedtime. Sadly, we took all of Cole's birthday cards down this weekend. His grand total (unless we have a few more arrive next week) was . . . drumroll. . .. . 214!!!!!!! Can you believe. I have never seen so many birthday cards in my whole life. I don't think I have received 214 birthday cards total in the 29 years that I have been alive. The living room looks TOTALLY bare without them hanging in the bay window and laced through the vertical blinds. I have boxed them all up and I'm keeping EVERY one of them. I'm asking Cole's Grandpa Webb to make him a chest to hold all his memory items, I'm afraid that it's going to have to be a pretty BIG chest. Some exciting fundraisers are coming up soon. I will update more about them closer to teh dates.
TodayFrom the kindness of strangers… Last Thursday WCPO of Cincinnati did a feature interview about the Lockwood Family: Kevin, Beth and their children Emma and Nicholas. Not only did this raise awareness of SMA but it also generated many donations. Today FSMA received a donation of $100,000 from one viewer who was touched by Emma and Nicholas' story. Thank you to the Lockwood Family for sharing their story and thank you to the donor who opened up their heart to help. The interview can be found at http://www.wcpo.com/wcpo/localshows/9onyourkidsside/203bec9e.html
TodayCole has had a couple of good days. He has been in pretty good humor here lately. We have only had a handful of gloppy episodes that have blocked his airway. I have "met" a wonderful woman online. The doctors are worried about her baby, Quinn. They are not sure what is going on as yet and the next step is a muscle biospy when his a little bit older. Please say prayers for this little baby boy. Please pray that if they do find something, that is isn't serious.
TodayCole received the best birthday present yesterday. Linda from New Jersey flew all the way to Missouri to deliver Cole's quilts! They are absolutely breath taking. Pictures do not do them justice. There is a story behind the quilts. Several months ago, I was introduced to an on line group of people who cross stitch, www.123stitch.com. I introduced myself and Cole and explained about our little angel. Linda, touched by our story, suggested that we contact an organization, Make a child Smile. We had already contacted them and they only accept children over the age of 2. We explained that our son would probably never see his 2nd birthday and they told us that they could not make exceptions. She offered to make a quilt for Cole and asked the stitchers of the message board to help. After learning of Cole's illness, the response was overwhelming. 43 blocks arrived, enough for 2 quilts and 2 pillows. Some of the blocks were even designed by a woman named Sandra, who is a professional cross stitch designer. After the quilts were completed, Linda entered one of them in their local 4-h fair for competition and it won a blue ribbon and best in division at the fair. Anyone who asked Linda about the quilt was told our story about Cole and the devastating disease of SMA. Linda was talking about the quilts to one of her fellow 4-h leaders, saying that they were too beautiful to put in a box and mail. Her friend Rebecca agreed and donated her frequent flyer miles to Linda so that she could come to Missouri in person. What a wonderful day it was. We wrapped Cole up in those quilts, we laughed, we shared stories, and we even teared up a few times too. My angel Baby has, once again, brought me to another special group of people that I will cherish forever. Thank you Linda. You are amazing. Thank you Sandra for the beautiful block designs. Thank you to all Cole's Adopted Aunties and Grammies on the 123 board who spent hours and hours stitching, and thank you Rebecca for donating airmiles and making this day possible.
TodayWell. Cole wasn't feeling well today. His party was scheduled to start at 3, but his heart rate was so high and he wasn't acting like he felt good, so we put him to bed at 2 and he's still asleep (it is now 8:10) He slept through his entire party. I have to admit, it was a bitter sweet day. I know I should be thankful for still having him at all, but it's so hard sometimes. Daddy and I opened all his presents and it was hard to think about toys that he will never play with and clothes he may not get to wear. (I'm having a "why me" moment. Bear with me) On a happier note, in combination with cards from the Grammies aunts and mom and dad, our card total hit 200 today! I have them all up on the wall and as soon as he allows, I want to try to get a good picture. Linda arrives tomorrow and my sister is picking her up and bringing her here. I hope that she's not scared. Aunt Zan is a scary driver sometimes. We cannot wait to meet her and see the quilts! We sent a balloon up to Angel Marshall Potter. Today is his birthday and I know that his mom and dad are having a hard day with out him. I hate SMA. Thank you all for all your love and support. The cards that hang on my wall and the presents that you sent are absolutely beautiful. We LOVE each and every one.
TodayToday is Marshall Potter's first birthday. He is celebrating it in heaven with all the other SMA angels that have gone before him. I cannot imagine how hard this day is for the Potters. Please remember them, but especially today as they observer Marshall's birthday. They received some very very good news yesterday (Thank you Marshall for your hand in this) and their insurance has approved their invitro efforts after much persuasion. We are so very happy for them and hope that they will be blessed soon with many many little feet!
TodayCole seemed to be doing a little better today. His oxygen levels were much better and we even were able to bump him back down to 1/2 liter tonite while she slept. (so far anyway.) Hopefully the antibiotic is doing the trick and he is on the mend. It's been a very scary couple of days. I won't try to pretend that I wasn't terribly scared. We are still not out of the woods yet, but things look much brighter today then they did for the past 3 days now. Please continue to pray for my little man. Today is his one plus one birthday!
TodayDon't know your family, but heard of Cole from Katie on a parenting website.He looks like a beautiful angel! I have a son who is just over a year too. I'll pray for him, and think of your family often. One time a friend said to me: "Sometimes something comes into our lives, just to show us what love is all about, and then it leaves, only to provide the most loving memories" Thank youfor sharing Cole with us! Tania, BC Canada
Today2:30 am ~~ 1 year ago today an angel was born to earth. Happy Birthday Baby Cole.
TodayHAPPY 1ST BIRTHDAY TO DEVIN ARNOLD!
TodayCole had another spitting up episode around 10:30 pm (3 times today) He's still freaking out when suctioning, gagging choking, crying when the machine turns on. He acts like he's either scared that he'll spit up, or it hurts him to suction. How do you tell which. I'm going to ask for him to go back out on antibiotic tomorrow. I'm almost sure that he has aspirated. I so don't want him to get another infection. We are not out of the woods yet. I hope that tomorrow is a better day. Please say prayers that he tolerates the suctioning and doesn't spit up anymore. Cole had a terrible night. He is on ativan consistently not just to tolerate the suctioning. He spit up around 10:30 again. Heart rate is 170s while asleep. Had to bump up his oxygen and sats are still only 95. Sweating profusely. I've got a call out to his pulm to see if we can start the antibiotics again. Please keep him in your thoughts and prayers today.
TodayI have to be away from Cole all day today. I'm really nervous. I haven't been away from him for a whole day for a long time. I have to go to a cont. education class to keep my PTA licensure. I hope that Mr. Cole doesn't have any episodes while I'm gone. I love you Coley.
Today22 Birthday cards arrived at mom's house today for Mr. Cole!! The total now from the cross stitch ladies is 55! Cole had a better day today. He spent it with his daddy while mommy went shopping for birthday presents.
TodayWe received 2 birthday presents today. . . the first was from Julie Oppermann, but we haven't opened it yet. We are waiting until his actual birthday on Wednesday the 13th. . . . The second present came from Amy, Lily (Sma 1) and Angel nathan. Thanks guys!! He got some veggie tales tapes, a beautiful angel bear that he can operate with his switch, and mommy even got some things too! Thank you guys very much!!! Mr. Cole Loves you!!! Cole's new goofy toofy is trying to pop through, right next to the first one. It is really giving him some grief! He was SO grouchy today!
TodayCole has been extremely fussy today. I think he is working on his second tooth and it is really bothering him. He has also had a couple episodes of spitting up and we have had to quickly do his cough machine to prevent any milk from getting into his lungs. Other then that, he has been doing overall ok. Sats have been maintained with only 1/2 liter of oxygen. . . We are gearing up for his big birthday next week. We can hardly believe that it is almost here. My cross stitch message board is sending him first birthday cards to my mom's house, and we have received 27 total already as of yesterday. This is really exciting. Also, we are continuing to look foreward to meeting Linda and wrapping Cole up in his beautiful quilts on the 17th.
TodayPlease say a prayer for my cousin Darrell Hake and his wife Christy and family. Christy had noticed that she was bruising very easily lately. To sum up, they went on vacation in Florida, but by the time they had arrived, Christy was totally black and blue. They took her to the emergency room and she is still in intensive care. They have ruled out lukemeia and lupus, but they susupect that she has an auto- immune disorder called ITP (idiopathic thrombocytopenic purpura). This illness lowers her platelet count siginificantly. They say that as little trauma as a sneeze can cause her to bleed to death. She is scheduled for a bone marrow biospy and more testing. They have 2 children, Brie who is a teenager and Ryan who is a couple of weeks older than Cole. Please remeber them in your prayers.
TodayThis weekend we had some exctiement. First of all, we received word that the creator of Cole's quilt is flying to Missouri on August 16th to hand deliver Cole his quilts and pillow. She said that they were just too beautiful to put in a box and mail. A lady from her 4-h group has donated her frequent flyer miles to the cause. We are SO EXCITED!! She arrives late Saturday night. Cole's birthday party is on the 16th in the afternoon. Although she will not arrive early enough to attend Cole's party, we look foreward to spending the day on Sunday with her! There are really some good and amazing people out there that have adopted out family and care for us. I hope that Cole is on his best behavior. Thank you Linda!!
TodayHi all! Just wanted to share what we did today. There is an RN who works at the local children's hospital (Cardinal Glennon) who lost her 17 year old son in a car accident. After her son died, she created The Jeremy Project. (www.thejeremyproject.org) She takes photographs of children or adults who face life threating illness. She says that working with famlies who will all too soon lose a loved one has helped her visit her sadness in a positive way. She came out to the house today (she does not charge for this service) and took pictures of Mr. Cole for his first birthday. She shoots all her pic in black and white. Today she shot over 50 pictures of our angel. We will get the proofs back. I can hardly wait!! Cole was on his best behavior. He was even stable enough to remove his oxgyen long enough to take some pictures without the tube across his face. I hope that they turn out!
TodayIt breaks my heart that Cole cannot talk. Tonight we were giving Cole a bath and I was saying to him "Daddy . . . Daddy" and he would mimic me and say something that sounded like "aaaahhhheee" Whether it was a coincidence or whether it was really him trying to say daddy I cannot know. Oh Mr. Cole, we love you so much.
TodayIt's been days since I've been here, so I guess I better put in an update. Cole has improved significantly since starting the antibiotic. We were at the pulmonologist on Tuesday and she said that she never expected him to be alive for the appointment. We are very thankful that we have the infection under control and that he is feeling better. He has had an off day today, nothing I can put my finger on, but something not exactly right either. I've met 2 new families this week. My heart breaks a little more every time I meet a new family. When I was talking to a family today, other than a few minor details our stories were so so similar. Their story could be our story. I hate it. A cure has to be found!
TodayJust wanted to say CONGRATULATIONS to Shani and Adi Rappoport who are expecting a HEALTHY BOY ~ SMA FREE!!!!! They are due 2/6/04!
TodayGuess what Cole got today!!!! His first TOOTH!!! It is the top right front one!! We think that he's going to look GOOFY with a TOOFY!! mommy
TodayWe had a visit from Aunt Zan's room mate Jenny today. It was great fun. We took pictures and Cole was on his best behavior. Grandma and Grandpa Webb arrived safely, tools in hand. They always come with a project in mind. I am so blessed to have such wonderful in laws. They have made our little home so beautiful with all their improvements. Thank you Grammie and Grandpa. We love you.
TodayHAPPY BIRTHDAY DADDY!!! I LOVE YOU VERY MUCH!!!! GOD GAVE ME THE BEST DADDY IN THE WORLD!!!! (Mom thinks you're pretty cool too!!)
TodayHi guys. Cole has been stable for 2 nights, crossing fingers AND toes. I called his doctor yesterday to report the happenings over the weekend and also told her about the change in color of his secretions. She said that he is unable to protect his airways and even saliva could run down his throat and into his lungs and cause an infection. Fluid in his lungs does not trigger any kind of cough reflex like it does in a normal person so it just sits there and produces infection. We do use a machine to help him cough, but apparantly we didn't get all the fluid out of there. She ordered him a strong antiboitic. He has had 2 doses so far. .>...>>>...>..>.. >...>. .>. . ...>>. .. His nurses for newborns, nurse Laurie, was over at the house yesterday and we weighed him and measured him. (Drumroll) Mr. Cole at 11 months and 8 days is weighing in at 26 pounds 12 ounces and 33 1/2 inches long! No wonder my back hurts! (NOT that I'm complaining) He is such a big boy. Another thing that we have noticed is that he's about ready to pop his first tooth. It is the top right front tooth. I just know that he would probably be gnawing on the furniture if he could do that. We rub his gums from time to time since he can't bite on anything to help it pop out. I know that it has to hurt. Darn ole tooth! Please keep our family in your thoughts and prayers.
Today3:19 am ....... Hi all. Just some news for tonite. Cole crashed again this morning at 2:30 am. He desatted into the 40s and we coughed him again to bring him up. We know in our hearts that one of these days, the coughing will not work to bring him up again. His little body is getting very tired. He is having a harder time fighting like he is so used to doing. He just fights and fights, but we know that one of these days he will no longer have the strength to fight. We love you little Cole so very much. Again, please keep our family in your prayers.
TodayHappy Birthday Aunt Missy!
TodayWe had a very scary morning. Cole's nurse ran upstairs this morning to wake us because he needed to be coughed. She had cranked up his oxygen because he had de sated and was on 5 liters and down to the low 50s when I got downstairs. We coughed him and he came back up and then we put him on his tummy. We were able to lower his oxygen back down to 1/2 liter and he took a little nappy. He was so scared and must of had a glob of something blocking his airway. Please keep Cole in your prayers. We love you little man.
TodayHAPPY 65TH BIRTHDAY GRANDPA LINHARDT. WE LOVE YOU!
TodayDan had a strange dream last night. He dreamt he was watching Ally McBeal. In the episode he was watching, Ally's daughter was feeling very sorry for herself. Ally told her that she wanted to show her something. . . . It was one of our Baby Cole checks (the one with his bunny picture). She told her daughter about Baby Cole and SMA and what our family is going through. At the end of the episode, a screen flashed. . . To learn more about SMA . . . In his dream he called for me to come downstairs.
TodayHAPPY 11 MONTH BIRTHDAY MR. COLE!!!!!! MOMMY AND DADDY LOVE YOU SO VERY MUCH. Thank you for being our little angel boy. Please stay our sweet little angel here on earth.
TodayThis morning was bad for Mr. Cole. Around 5:30, Cole threw up, and since he can't swallow, I suspect that some of he went into his lungs. His nurse didn't wake us up to use the cough machine. His sats were low for the majority of the day, his heart rate was very high, and his resp rate was very high. He slept a lot today which was good, and he looked a little better by evening time. He was so weak today, he didn't even have enough energy to fight his cough machine. We love you, dear baby Cole.
TodayTo the world he is but one But to us he's the whole world
TodayIt's been several days since I've written in our journal. Cole is still pretty much the same. We thought we heard a rub in his left lung today, but went we rolled him and repositioned, we couldn't hear it anymore. He's still on a half liter of oxygen full time to keep his sats up. ~ We have scheduled a photographer to come to the house on August 2nd to take his 1 year old portrait. Her name is Darcie and she lost a child in a car accident. She takes these pictures Celebrating Life in the memory of her son. She said after he was gone, she realized how important pictures are. I hope that Mr. Cole cooperates. ~ We are looking foreward to a visit from Grandma and Grandpa Webb this weekend. Dada's birthday is coming up, so we will probably celebrate a bit with them. Aunt Shannon, Uncle Mark and cousin Mackie will hopefully make the trip too.
TodayMr. Cole and I had a memorial for Angel Mia today. We sent a prayer and a purple balloon up to heaven for her. I stood out on the deck and sang songs for her and watched until I couldn't see her balloon anymore. "Dear little Mia, Please watch over Mr. Cole and all the other SMA babies here on earth. Please use your beautiful golden wings and wrap love all around them, until it is time for them to come and play with you." ...........Baby Cole and Mommy.............. Little Angel of the Sky ~ Never to Run ~ Forever to Fly
TodayAlways a day late and a dollar short. Happy 4th of July!!!! Another holiday for Mr. Cole! We didn't do much for the holiday because it is so darn hot and we dpn't like to take Cole around many people. We did get a fun visit from Joy Raccagno, her mom Susan and Joy's fiance, Andrew. Cole was on his best behavior so it was a pleasant visit. Hope everyone is having a safe and happy holiday.
TodayGood morning. We just wanted to pop in and say hi. Mr. Cole is doing ok. He is on his oxygen now pretty much full time. It makes him more comfortable and we aren't going to make him struggle to breathe when he tolerates the oxygen so well. He had a really fussy day yesterday. We hate it when he is fussy and we can't figure out what exactly to do to make him feel better. It's so hard to tell what is bothering him (stomach ache?, gas?, an itch he is unable to scratch?) but we try to do everything that he likes to make him happy, Veggie tales, bath, tummy time, massage. He's been on the chatty side this morning, singing to his squisy ball and watching tv. In a couple minutes, I have to hook him up to his shaky vest for chest PT and do his cough machine. I guess after that our good mood will be over. Today is a anniversary of sorts for us. 3 years ago we brought our fuzzy face kid home from the pound. Getting the dog was all part of the master plan (Dan and I are planners. We don't deal very well with spur of the moment) We planned to get Loki first so that he would be out of his puppy stage when we had a baby. We planned on training him and took him to puppy school (he dropped out after 5th grade. No diploma for our flunky dogger) and then he would be ready to deal with having a baby. It's amazing how quickly even the best laid plans go arwy. Even tho Loki is lacking for attention right now, he is a good dog. On Monday night we held our candle light vigil for little Mia and for the other SMA families. On Monday we lit the candle (at first we forgot to turn the oxygen off. It's a wonder that we didn't blow the house up) and played Josh Groban's song "To Where You Are" and prayed for little Mia and all the other SMA families. This is one of the most beautiful songs I have ever heard. On Tuesday night when the actual vigil was to take place, we had learned that little Mia had already joined the other angels in heaven. I was holding Cole and I said my prayers and whispered in his ear while he slept for him to talk to the other angels to help him and to guide him when it is time. We prayed for strength for Mia's mother and brother and for all the other families who have to battle SMA everyday. This awful illness just has to be stopped. I urge all our friends and families to join Families of SMA to help find a cure. Too many children suffer at the hand of this awful illness. If you are interested in joining Families of SMA or are interested in making a donation, please visit www.curesma.org . Only through support will ever have a chance of finding a cure for sma. I also wanted to honor Marshall Potter's mom and dad, Mark and Laurie, for organizing a series of fundraisers in honor of Marshall. All monetary gains will be donated to Families of SMA. The grand totals have not been exactly calculated just yet, but it is estimated that the total is very close to $30,000! You guys are AMAZING! I am SO PROUD of you BOTH!! Well, my update has turned into a novel, so I will go. Please have a safe and fun holiday.
TodayHeaven was blessed with another angel today................... Please take a minute to remember little Mia Haq, 15 months. She passed away this afternoon. Please keep her mom, Stacey, her dad, and her brother Dylan in your thoughts and prayers.
TodayHi guys! Since this is the week of the 4th of July, we were feeling particularly patriotic this weekend and took some pictures of Mr. Cole in the American Flag. We took Cole to Wal-Mart when he was only 2 weeks old and had his first picture taken in the American Flag. When we first found out that Cole had SMA we never thought we would have another opportunity to wrap Mr. Cole in the flag for 4th of July, but here we are at yet another major holdiay! Please send a prayer upward for a little SMA baby that is in the hospital right now. Her name is Mia and she is not doing well right now. I won't go into all the details, but it's not looking good. Also, on Tuesday night, July 1st, if you all would please take a minute to light a candle and say a prayer for our SMA children and families. Our support group is organizing this little gesture, and I thought I would pass it on the my family and friends. 8pm (Eastern) 7pm (Central) 6pm (Mountain) 5pm (Pacific) Lets all join in together at the same time to say a prayer for our sma angels. Thank you all for your continued support for my family. It is truly appreciated. Kristin, Dan and Cole
TodayIt's late and I'm exhausted, so I'm going to keep this entry short and sweet....... First of all, I want to with the Potters GOOD LUCK on the golf tournament fundraiser that kicks off tomorrow in memory of Marshall. All proceeds will be donated to FSMA! I am so very proud of both of them for doing so much good for so many children in the memory of their beautiful Marshall. Thank you so much you guys! . . . Mr. Cole is continues to use his oxgyen for comfort. He does so much better on it, so he is on it pretty much full time at this point. We wrapped him up in the american flag today and took his 4th of July pictures. We originally wanted his picutre to look similar to Marshall's flag picture so they could be framed side by side, but Mr. Cole cannot tolerate being propped up anymore so that was impossible. Laying down pictures from now on is our only option. Oh well. . . . Today I saw Coles "aunt" Michelle's new house. It is absolutely beautiful! Tomorrow Dan and I are going to some open houses in that area and going to look at some display homes. We know that we are going to move out that way someday and we think that this is a fun, and inexpensive way to spend a couple of hours together.
TodayAnother SMA angel is in Heaven. His name was Christian. He was a beautiful little boy, just 6 months old. Please keep his family in your prayers.
TodayI wish there were some way to control my bad nightmares. I have been having them for days now. I'm sure you can imagine what I dream of, and I don't know how to stop it. It's bad enough that one day we will have to live that day, but my stinkin' subconcious keeps bringing it up all the time. I guess since we have seen so much more progress with Cole's illness that it's really been in the back of my head here lately.
TodayWe got approval for Mr. Cole's new pulse ox this week!! Yeah!! I never thought that I would get so excited over a piece of equipment. His new one is very small (only 19 ounces) and very portable and has a 24 hour battery life. No more conking out in the car on the way home from Children's hospital. Another fun thing that happened today is that Cole got to visit with Liz and her daughter Kalair. They were driving home from DC and the SMA conference. We took a lot of pictures and the kids got to be together. I swear that they have some kind of special language with each other with their eyes. Mr. Cole tolerated the visit pretty well, but started to get fussy at the end because we took him away from his Veggie Tales. Daddy has to work a lot in the next 2 weeks. We are spoiled because he's around so much and really miss him when he's gone from the house. Cole continues to be on and off the oxygen for comfort. We do not hesitate to put it on if he seems restless. Yesterday Baby Cole and Mommy fingerpainted. We made pictures. It was fun.
TodayThe annual FSMA conference has just ended. We are happy that all the travelers that we know have made it home safely and that they had the opportunity to meet other families. Thank you Mark and Laurie Potter for representing Mr. Cole and wearing his button so proudly. We love you guys so much. I cannot think of another person I would want to represent my son.
TodayI just wanted to take a minute to thank all those people out there who support us, unconditionally in our decisions for Mr. Cole. You know who you are. We are still very comfortable in our decisions for Cole. As hard as it is, we know that these are the right decisions for Cole.
TodayAnne, Aunt to angel James Patrick, held a fundraiser to spread awareness and support FSMA on Thursday. Although Cole and I didn't get to go, she tells me that Cole was definitely there is spirit! She framed pictures of James and Cole and explained each picture about how SMA has affected our lives and also how FSMA brings families together. Catherine, James' Mom is such a source of friendship and support for us. We pray for them and wish them only good things in the near future. ~ ~ ~ ~ Cole is still struggling. He has good days and bad days, good hours and bad hours, good minutes and bad minutes. Every time we think we know what's going on, everything changes. What we did yesterday, may not work today. What we do today, may not work tomorrow. I have been talking with a woman from Milwaukee, WI. She has a nephew that has SMA 1. Like us, they are making many of the same decisions about care for her son. They sent us pictures and he is a CUTIE!! I hate SMA so much. Hopefully, one day, no child will have to suffer at the cruel hand of SMA. One day there might be a cure. I will not come in time to save MY child, but maybe one day, SMA will cease to exist. Thank you Anne and Laurie and all the others who work so hard to raise money to stop SMA
TodayI'm almost afraid to type this, but Cole has perked up significantly this morning. He had a fairly decent night last night. Did not require oxygen, only de-sated 4 or 5 times and popped back up with suctioning. His secretions are minimal and thin today (yeah!!) and his oxygen levels are pretty high when he's awake. Heart rate tends to fluctuate to the higher side still. He was in a very good mood this morning, smiling at his daddy when he was playing with him and his dino puppet and singing for a long time while in tummy time. I finally got him singing on video tape. I hope that we can hear him over the veggie tales playing in the background. My child amazes me. So many times when he is having a bad spell, I think, is it time? Is this it? And then Mr. Cole fights his way back. I continue to pray for what's is best for him. We continue to live each day so that at the end we can say, NO REGRETS
TodayIt's been a very bad past couple of days. Cole is not doing well. Even with the oxygen blowing, Cole is struggling. His right lung function is diminished and one of his nurses suspects that he has totally collapsed on that side. His sats are low, his heart rate is high. We plan to call his pulmonologist tomorrow. Please keep us in your prayers and pray that we have the strength to make the best decisions for our son.
TodayWe had such a good weekend with Dan's mom and Dad. For Cole's 10 month birthday, we bought him a little wading pool. We put it in the yard in the shade of a tree on Saturday and let him have some fun outside for a change. After that, we lit candles and ate birthday/father's day cake. Thank you Dan and Debi for coming. We wish you lived closer.
TodayFather's Day ~ I wanted to take a minute to honor Dan. Those of you who know my husband, know that I could not have looked for more kind or gentle man to spend the rest of my life with or to father my children. He has been the rock through all of this, when I fall apart at the seams, he's always there to pull me back together. He is here, day in and day out, making sure that we are ok. I see the way he looks at our son, so full of love and it kills me to know that one day Cole will be taken away from us, leaving not only our arms empty, but our hearts too. Dan, I love you with all my heart and soul. Even tho life has dealt us a rotten hand, let's hope that we are hiding an ace in each other that we will play at the final round. We will make it through this. And we will make it together.
TodayFather's Day ~ This was a challenging day for Dan and I. Cole has not been doing well today. We had to hook up his oxygen for the first time for him to maintain his saturation levels. His heart rate is sky high again and he has had his Ativan regularly today. We try to keep him as comfortable as possible. The icing on the cake, Nurse Lisa is sick. Mommy is pulling night duty because they couldn't find a replacement for her. We are hoping to have an ok night, non eventful preferred. We love you little mister.
TodayHAPPY BIRTHDAY LITTLE MISTER!! 10 MONTHS OLD TODAY!! You, my beautiful baby boy, have no idea how much you mean to your father and I. You are so perfect, our little angel here on earth. I know that you don't understand that today is another birthday, 10 months old. . . but every month that you are here with us is a big deal. You have shocked and surprised many of us. Your work here isn't done. We love you so much, Baby Cole.
TodayCole did pretty well today over all, better than Mommy. I cried the whole day. I just couldn't stop. Some days I think it's just too much for me to handle, and then I look at our beautiful baby and know that I have to go on. I went out in the car today, looking for a place to get my nails done, but I couldn't find a place where I wanted to go, so I just drove around town crying. I hope that I feel better tomorrow. Dan doesn't know what to do when I act like this. Who can blame him.
TodayThe pulse ox saga continues. We think that we are one step closer to getting a new one for Cole. We found that Apria (in network) sub contracts out with BCI (the pulse ox company) and now it is up against approval for the insurance company. Hopefully we will get it soon. Ours conked out again in the car on the way home from children's hospital and we even had it plugged in at the doctors office. We had bad storms tonite and Nurse Lisa said there were power outages up the road and she was hoping we didn't have loss of power here. Luckily we did not. If we had, I guess we would be heading to the hospital. He de sats way too much at night to be messing with that. We saw Cole's pulmonologist today. I like here a lot. She said that we were amazing and that she supports us 100%. It's always nice to hear that someone thinks you are doing a good job. As for Cole.... She doesn't want him to gain much more weight, so if he needs extra fluid, we are to supplement with water. We can start some baby foods in the tube if we want to also. She said that he is thriving and healthy and has a good growth curve. Our big stink wieghs in at 25 pounds 12 ounces and 32 inches long. He is a biggun!
TodayIt's been a couple of days since I've written in our journal and I know that people are asking about Cole, so if you have checked in here, this is what has been happening the past couple of days. On Friday, Cole was running a low grade fever. I'm not sure still what was causing it. It went away toward late morning and hasn't returned (knock on wood). Yesterday we had a pretty good day, until his afternoon cough session. He desated into the 60s for what seemed like forever (actually it was probably for only 30 seconds or so that low) but we had difficulty getting him back in the 90s for about 5 minutes or so. I could hear a glob of junk stuck halfway between his lungs and his mouth, just rattling and rattling around in there and we knew we had to get it out or he would choke to death. After we had him stable, we put him on his stomach and he just passed out from exhaustion. He slept for about a half hour and then Grandma and I took him for a walk in the subdivision. The weather was so nice and it was great to be outside. The Tiger stroller works great for strolling. He likes it too because he didn't even make a peep. Just looked around while we were strolling. Coming up this week: We see the pulmologist on Tuesday. I'm going to insist that she write a script for some vivonex or tolerex in case I can't produce 64 ounces of breastmilk per day. We plan on increasing his feeds and starting the baby vegatables as soon as his amoxicillin is out of his system. ..... Grandma and Grandpa Webb are coming on Thursday night for Father's day ..... That is always exciting ..... I'm still getting wonderful support from the pump moms group. They are such a neat group of women, dedicated to providing the best food for their children. I'm very happy to be a part of it.
TodayCole had another better day today, but now Daddy thinks he's getting a sore throat. Is it ever going to end around here? I took Cole out today for a short stroll through the subdivision in the Tiger stroller. It is a little on the humid side, so we didn't stay out long. I'm still working on getting Cole a new pulse ox, but I'm not having much luck finding a DME that carries the one we want. I have a call out, and hopefully that I will get a call back tomorrow. I guess if I haven't heard anything be mid morning, I'll call again. They say that squeaky wheel. Our doctor has already approved it, now we just have to find someone in network to carry it or order it. Fight fight fight, everything has to be a fight.
TodayCole has lost so much strength in the past week. He isn't moving his arms much anymore. Again, whether is is because he was sick, or if this is progression of SMA, we will not know. He had a pretty good day today. He didn't sleep a lot, and he didn't need Ativan. Right now as he sleeps his sats are 100 oxygen and 128 heart rate. This is the best he's looked in a week.
TodaySomeone said this to me today. ~~~~~~~ If you put one foot in yesterday, and one foot in tomorrow, you miss out on today... try to stay in the moment....so that you don't miss any blessings that today has to offer you.
TodayAnother thing that happened today is that I'm officially unemployed. My work called today and said that they didn't have room for me in next year's budget. Oh well, there are things more important than just a job. Jobs will come and Jobs will go, but someone very special to me told me today that I am doing the most important job of all keeping my beautiful boy happy and comfy. She said that I am doing a "mighty fine" job. I hope that she's right.
TodayI have found another source of support..... It's a Yahoo Group called Pumping Moms. I can't believe how many moms out there that are pumping for their children. I felt so all alone out here, but now I have found a wonderful group of women to give me some support. Someone even offered to send me her milk (she is a surrogate mother who is still pumping!) I cannot believe how many wonderful people there are in the
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TodayCole had a better day today over all. His heartrate was still on the high side, but lowered at times to the 150s and 160s while awake (the first time in 3 days). Hopefully tomorrow will be even better still. He has had 4 doses of Ativan since Saturday night, but we are only giving it as he needs it. Hopefully this is just a bug that he can get over, and not rapid progression of his illness. We pray that God leads us to the right decisions for Cole's care and gives us the strength we need to help him. I on the other hand am trying to boost my pumping so I can increase his intake to 64 ounces per day (Currently he is getting 40) Hopefully I can do this.
TodayWe have had a couple of BAD days. Thursday his oxygen levels dipped many times while he was sleeping. Cole went to the doctor on Friday. His heartrate has been very high for the past couple of days, running in the 180s when he's awake and not dropping much when he's asleep. The doctor said that there was green fluid in the back of his throat, so they started him back on antibiotics. Friday night Cole was up from 9:30 until 1:30, didn't sleep well after that, dropping his sats. He either is holding his breath or having periods of apnea. After talking to the doctor today, we now have oxygen in the house and have started him on Ativan as he needs it. We also filled his morphine prescription, but at this time are reluctant to use it. Bottom line is that we want him to be comfortable. We don't know if this is illness or not at this time. We are going to take it one minute at a time.~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ Cole's Tiger Stroller from FSMA came on Friday. I don't know if he will get to use it or not. Today would have been a good day to go out, it was cooler and not really sunny.
TodayI received the best piece of advice I could ever have heard today. And it could not have come at a better time. It came from Shaina, Mom to Angel Jacob (if you want to see this beautiful angel please visit his website www.ourshootingstar.com) She said to ask myself..... "did I do everything in my power to make Cole as comfy as possible today??" "did I live today in a way that i would have no regrets?" I can honestly say yes to both. Thank you Shaina.
TodayHi guys! Just wanted to let you know how Cole is doing today. We had a rocky morning as far as oxygen levels. He was kinda fussy and I couldn't get his levels above 92 percent (anything under 90 is not good-- 100 is perfect). We did a couple of extra cough sessions this morning and our nebulizer, but nothing was helping. His heart rate is high too. But after a good nap this afternoon, he perked up a bit, so much that I felt comfortable taking him off the monitor for a half an hour or so to give him his bath that he loves even more than Veggie Tales (and that's saying A LOT!) He's resting well this evening so we'll cross our fingers that tomorrow is even better. Please keep the prayers coming, as we are not out of the woods yet. I am feeling much much better, but all the cold meds that I have been taking has really made my milk take a hit. Hopefully with some vigorous pumping I can bring it up in the next few days. I have a lot frozen, but it always makes me very nervous when my supply diminishes for whatever reason. I plan to keep him on pumped breastmilk as long as I possibly can (He never learned to nurse, so I have pumped for him for over 9 months now already). ~ ~ ~ ~ ~ ~ ~
TodayDarn ole Cold----- Mr. Cole has a lot of yuckies in his nose that we have to suction out. I'm trying to stay as far away from him as I can, and use the face mask and sanitizer and gloves when I'm touching him. I haven't held him since Sunday and it feels like an eternity. Tomorrow Dan is going to Springfield for work, so I know that I'll have to have closer contact with him. Hopefully I'll be feeling much better tomorrow. It scares me a lot to know that even this minor cold can develop in to very bad things very quickly, but we are doing the only things we know how to do. I hope that he can shake it without treading on dangerous ground. I know that there will be a day when Mr. Cole will be called home and will have to leave us, but I always say, just don't let it be today. I say that everyday. Please don't let it be today.
TodayWell, Cole's oxygen levels looked a little better today overall, but his heartrate stayed pretty high. He hasn't developed the snotty nose that I seem to have. Hopefully he won't get it. He slept until 9:30 this morning and took a three hour nap this afternoon. That's a lot of sleeping, even for him. I have a fever this evening, so I'm staying as far away from him as possible. Let's hope that he continues to do well through this.
TodayWhat a day. Mommy has a cold and I think Cole is getting it too. He was acting fussy today, not himself. He didn't even really enjoy his bath (not at all like him). To say the very least, I'm afraid to hold him at all. I do tend to some of his care, like coughing him and suctioning him, but I'm making sure that I use ALOT of hand sanitizer and wear a lovely blue mask when I'm around him. Hopefully the cold will be short lived and he will be back on top soon. We keep praying that he makes it through this. His oxygen levels perked up a little bit this afternoon. Thank goodness Grandma Linhardt is here to help. Where would we be without Grandma Linhardt. Kristin
TodayCole had a pretty cruddy night last night. He de-sated about 12 times through the night. His sats were not super great today, but they were acceptable I guess. Oh a happy note we had a fun day. Catherine, her mom Carol, and her sister Anne came over to see Mr. Cole. It was a great visit!! Anne is such a funny lady and she kept us in stitches the whole visit. We shared stories of their darling angel, James Patrick. Anne is organizing a fund raiser for Families of SMA in October, if you are interested in helping or attending please let me know and I will fill you in on the details. Please say some extra prayers for Catherine. She deserves only the best. I have often thought about how our sma angel babies go to such wonderful and loving families. I guess it's supposed to be that way. That way these little guys only know love before they are called back home.
TodayWe will pray for Cole. Theresa's uncle Dennis & aunt Brenda Wallingsford
TodayGrammy came up a day early yesterday and gets to spend 4 whole days with us! Dad had an emergency call and had to go to Indiana last night. That was no fun. Mr. Cole had a pretty good day. We are trying to get back on schedule (it's all messed up because of the upper GI) with feedings and treatment. Our naps are happening later in the afternoon, so that means here it is after 8 and my pootie is still up watching his veggies. Tonite the weather was just perfect, so we took a walk in the wagon. It was wonderful. -------------------------------------------------------------------------------------------------------------I'm almost finished with Cole's block from Mommy and Daddy for Cole's quilt. Hopefully I'll be able to mail that off this week. I cannot wait to see what the finished product looks like. There are so many beautiful squares already. They are posted on the web at http://community.webshots.com/user/lindazur A wonderful woman named Linda in NJ has organized it. Thank you so much Linda. Your effort and support continue to be greatly appreciated.
TodayCole has been doing very very well the past couple of days. He hasn't spit up since Monday night (knock on wood) and his oxygen levels have been EXCELLENT (more knocking). He has been in a pretty good mood the past couple of days too which always a good thing! We are going to have Cole's upper GI first thing tomorrow morning. Please pray that his surgery for his reflux is holding. We'll let you know what the test shows tomorrow Another thing I would like you to say an extra prayer for is for one of my sma friends. They have already lost a baby and they are trying for healthy children and are having a procedure done on Sunday. Please pray that she and her husband are blessed with a healthy child (or 2). I have become very close with her and her family and only wish good things for them. The more prayers that go up to heaven the better!
TodayIt's been a rather trying couple of days. Cole has had 2 incidents of spitting up and he could not breathe. His sats dropped to the low 60s and we had to use the cough machine to bring the milk out of his throat. I'm not sure if he got any in his lungs or not. He sounds clear, but it was a very scary situation. We called Dr. Keshen, his surgeon, and we are scheduled for an Upper GI on Thursday morning. I'm very scared that his fundo has slipped. That would be awful. I'm not sure what the options are if it has slipped, but I don't think Cole will make it through another surgery. I don't know if we can PUT him through another surgery. I guess we'll just have to wait and pray that the fundo is still intact. It has been an emotional day too. Many people tell me how strong I am, and for the most part that is true. I seem to handle the big things better than the smaller things. I had planned to attend a course for First Steps Orientation, but the class is full. I was asking them if they could make an exception because we have very special circumstances, but the promptly told me no and I just started bawling on the phone. I couldn't help it. I know that the lady was probably thinking "Who is this nutcase on the phone?" Hopefully I can find some online course that will be ok for my cont. ed. I'm so tired of worrying about my stinking license, I almost don't care anymore. I know I say that now, and will not feel that way when I cannot work anymore, but I'm just so tired of dealing with things. I talked to Marshall's mom on the phone today. It always makes me feel better to talk to Laurie. She asked if she could be Cole's sponsor for the FSMA conference and we are tickled pink that she will represent Cole in our absence. Marshall, if you can hear this, you have the best momma!!!
TodaySometimes we have a lifetime ~ Sometimes we have a day ~ Love just isn't something that's measured that way
TodayI've been so down the past couple of days. I guess it's been so very hard and lonely without Dan here, and now that he's back, I almost feel resentful that he had to go. I know that's stupid, but who can control feelings anyway. Another thing that makes me down is, I cannot steer my thoughts away from how we are going to have more children. I know that I should not go there right now, especially since Cole is with us NOW and he's doing relatively well at the moment. Again, you cannot control your thoughts and emotions no matter what you do. I wish this wasn't so hard. I wish .... I wish ... I wish... I've done so much wishing that I don't even know what to wish for anymore. I'm just rambling now and really don't know what to say.
TodayToday I got to get out of the house for a couple of hours with Aunt Zan and Grandma! We went downtown to shop for wedding dresses for Aunt Zan's wedding. Can you believe we found one!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! It's beautiful. Mom even LIKES it!! I truly hope that Suzanne and Justin do not carry this awful gene and they won't be faced with the decisions that we have to make. A new marriage is stressful enough, but having to deal with such decisions regarding your children is very hard. Suzanne is scheduled to get her carrier test at the end of this month and if she is a carrier they are going to have Justin tested as well. We all pray that they do not carry this deadly gene. Mr. Cole spent the whole afternoon with his dada!! He missed his dada last week and is very glad to have him home. I'm glad he's home too.
TodayI heard a BEAUTIFUL song on the radio last night. I'm sure that I have heard it before, but I have never listened to the words. JOSH GROBAN LYRICS "To Where You Are" Who can say for certain ~ Maybe you're still here ~ I feel you all around me ~ Your memories so clear ~ Deep in the stillness ~ I can hear you speak ~ You're still an inspiration ~ Can it be (?) ~ That you are mine ~ Forever love ~ And you are watching over me from up above ~ Fly me up to where you are ~ Beyond the distant star ~ I wish upon tonight ~ To see you smile ~ If only for awhile to know you're there ~ A breath away's not far ~ To where you are ~ Are you gently sleeping ~ Here inside my dream ~ And isn't faith believing ~ All power can't be seen ~ As my heart holds you ~ Just one beat away ~ I cherish all you gave me everyday ~ 'Cause you are mine ~ Forever love ~ Watching me from up above ~ And I believe ~ That angels breathe ~ And that love will live on and never leave ~ Fly me up ~ To where you are ~ Beyond the distant star ~ I wish upon tonight ~ To see you smile ~ If only for awhile ~ To know you're there ~ A breath away's not far ~ To where you are ~ I know you're there ~ A breath away's not far ~ To where you are
TodayWhy does everything have to be a fight. The bath chair saga is hopefully finally over. You do your homework and even call about products, but are time and time again given misinformation. I had to get mean on the phone again, but hopefully it has been resolved. Aunt Zan was in Home Depot on Monday, sitting on the floor, surrounded by pvc pipe trying to figure out a way to make us a bath chair. One of the workers asked if she needed help and when he learned what she was trying to do, turned right around and walked away. I haven't seen it yet, but she's bringing it over tonite for a trial run. She says that it isn't pretty, but it's purple. Oh my, hopefully it will work. She should have been an OT! --------------Cole is really working hard to breathe today. It's so frustrating because he looked SO good Monday and Tuesday, sats were 98-100 and today he's hanging around 95-96. He's really pumping his belly to get his breaths. Maybe too much birthday excitement yesterday. I'm trying to hold off on his bath until Aunt Zan comes over tonite, but baths sometimes makes him feel better, so if he doesn't perk up soon, off to the tub we'll go. We really miss Daddy a lot. Only 2 more days and he'll be on his way home. If I could only get a full night's sleep, I'd be doing good. Monday night the phone rang at 2:27 am with a wrong number trying to send a fax and last night my clock radio started playing for no reason at 1:30 am. The alarm part was set for 7:00 am and the radio part was on off. I finally had to unplug it! I plugged it back in this morning and it's still continues playing. Weird. Maybe we have a poltergeist in our house!
TodayHAPPY 3/4th BIRTHDAY MR. COLE!!!!!!! 9 MONTHS OLD TODAY!!!!!!!! MOMMA AND DADDY LOVE YOU VERY MUCH!!
TodayOh Mr. Cole. What a good day we had today. We didn't get much done around here other than talk and smile at each other, but it was a good day nonetheless. I held you for over an hour today like a real baby. You would look up at me and smile and I would tell you "boo" and that would make you smile even bigger. This was a BIG deal because you usually do NOT tolerate being held on your back with your head almost in midline. Oh how I wish I could hold you forever. Your grandma used to have a picture on the wall in my room when I was a little girl that said "Cleaning and Scrubbing can wait till tomorrow. Cuz Babies grow up, we've learned to our sorrow. So quiet down cobwebs, dust go to sleep. I'm rocking my baby and babies don't keep." Although we don't have the cleanest house in High Ridge, I'll bet we have the house with the most love in it. This afternoon we took a bath and you loved it. It's amazing how much you can look like people. You look SO much like your cousin Noah today. Last year in April I took Noah for a "Day of Fun". I was already pregnant with you. On that day I imagined what it would be like to have you here and take you places and play with you. It was very easy to pretend that Noah was my own child. Although we don't get to do all those other things, we are trying to make your life very happy. We love you so very much, sometimes it hurts. Your dad is in Ohio, but he asks about you first thing whenever he calls. I know he misses you a lot, baby Boykie.
TodayI never really realized how much my own mother meant to me until I became a mother myself. I knew I loved my mother very much and she would do anything for me (within reason of course), but I never really realized how much a mother loves her children. I have played many roles in my life, daughter, sister, friend, wife, professional, but none of these roles are as important as the one I hold now as a mom. From the first moment they placed Cole on my arms, I knew that my life would never be the same. I was a mom and have never felt so much love for one person in my whole life. When we found out Cole was sick, I immediately went looking for a way to "fix" it. That's what mom's do. They fix what's hurting and make it all better. They kiss boo boos, they wipe noses, they let you sleep in their bed because of the thunder. Whenever mom is around, everything is supposed to be ok. No matter how hard I try, I cannot fix Cole's illness. As a physical therapist assistant is is very frustrating that there is nothing I can do to make his muscles work, but as a MOM it is devastating to know that there is something beyond my power to fix. While looking throught the card section this week, I read a card that said "Motherhood holds both sunshine and rain. That is the only way to make rainbows." I can truly say that I have sunshine and I have rain, and the biggest rainbow of all is Cole. Kristin
TodayWell, we didn't win the raffle. Oh well, what do we need 2 houses for anyway. Cole had his visit with Kim (his parents as teachers lady) and was talking up a storm to her. He had a lot to say. He really talks a lot when she comes. Grandma and Grandpa Webb are here visiting us. It's good for them to be here with Cole. He likes all the attention. We are having issues with our nursing service again. If it's not one thing it's another. Sometimes I wish we weren't so dependent on them. But there is no way we can give Cole the care he needs 24 hours a day by ourselves. I hope that it gets worked out soon and I hope that I like the results. Maybe it will all work out ok.
TodayI don't think Cole feels very good today. He didn't sleep much, was very whiny and Veggie Tales didn't please him (You KNOW something is wrong when singing vegatables aren't entertaining). Our bath chair came in and it does NOT do what they said it did, and it doesn't recline at all, so we have to send it back. That is a big boo bummer, and it was enough to send me in a fit of tears today. I hate crying over stupid stuff, but I guess since I cannot cry over big stuff, it's the stupid stuff that sends me over the edge. The computer is trashed. We have to start from square one again. My wonderful Daddy has saved all my updated about baby Cole (YeAH!!) So I can continue to work on "Cole's story" update book. Thank goodness I have printed out the pages I completed so far. Tomorrow they draw for the house they are raffling off for spinal cord research. I know it's probably bad of us, but we hope that we win. The odds are better for winning the house than they were for Cole getting SMA, so maybe. Dan says not to hold my breath. Boy it would be a good way to start over tho. I don't know. I'm just rambling now. Kristin
TodayWE HAVE HAD A DEADLY VIRUS ATTACK OUR COMPUTER!! WE LOST ALL OUR EMAIL ADDRESSES FOR COLE'S UPDATE LIST! IF YOU SEE THIS MESSAGE, PLEASE EMAIL US AND TELL ME SO I CAN PUT TOGETHER ANOTHER LIST! IT'S BEEN A REALLY BAD DAY SORRY! KRISTIN, DAN AND COLE
TodayCole has had a couple of cruddy days. His oxygen levels have been much lower than usual. I hope that he pops back up tomorrow. It scares me a lot when he has bad days because I never know if it's the beginning of the end. I always think, and I know that I shouldn't "Is today our last good day, Is this the start of all bad days?" It's like we are standing under a knife suspended by a handful of hairs, and every so often we see one of them break, knowing that eventually there will be none left. We see subtle things and more obvious things but all lead to one devastating fate. It is so hard to see him getting weaker every day. To see him fight so hard to breathe and to use what little movement he has. We have ordered a special needs stroller for him that lies completely flat so we can take him more places, but sometimes approval for such things can take months. I'm afraid Cole doesn't have months to wait for it. Hopefully they can move quickly and Cole can have as much use out of it as possible. I've been to Linda's site and have seen all the beautiful squares! They make me want to cry. I have found such a wonderful group of people. I'm trying to make one from mommy and daddy, but I may have bit off more then I can chew and I might not make the deadline. Hopefully I will be able to finish it. Please continue to keep us in your prayers. Baby Cole sends his hugs. Kristin and our Little Angel on Earth, Cole
TodayOh jeez, I'm behind again. It's been almost a week since I've been in to update. Cole had an excellent weekend. We took some picutres of him. We used his versaform pillow to mold around him and set up a photo shoot on Mommy and Daddy's bed. We let him watch his baby beethoven dvd and that helped to keep him entertained. This is the first time in a long time that we have tried to set him partially up with his head in midline. He did very well with it. We took the loaner stroller out for a walk and he really likes to ride in it. We can't wait to get our real one, but that will probably take some time. Monday, was a cruddy day. Sats were lower than usual. I wish I could figure out what makes for a cruddy day, and then we would stop doing it, but I guess everybody has good days and bad days. This week is Nurse Appreciation week. Thank you to all our nurses who provide such loving care to our little angel. You have no idea how much you mean to us.
TodayMr. Cole is doing well, although Cole is requiring a lot more suctioning and monitoring here in the last couple of weeks. Sometimes he will de sat for no reason (meaning his oxygen levels will fall below a safe level) and we will have to quickly suction, or use his cough machine. Last weekend we had a belated easter egg hunt in the yard. My niece and nephew gathered all the eggs and Cole hung out in the wagon with Mom and Dad in the shade. We are investigating in getting Cole an adaptive stroller so we can take him places easier. He has out grown his normal stroller and it doesn't lie flat enough either. We have a loaner at the house for a week and hopefully if the weather cooperates, Daddy and I would love to take him to the zoo before it get too overwhelming hot. Mommy gave baby Cole a sun burn last week strolling him in the wagon and felt really bad about it. Yesterday we went to see Cole's lung doctor. She said that Cole looked weaker to her and had less tone (which we would have to agree with) but his lungs sound clear even though he works very hard to breathe. Today we picked up Cole's Easter pictures from Target. They turned out really good! I hope the files are not too big and that you guys enjoy them. We get a little picture happy around here sometimes. Dan was not too thrilled to see his son in a bunny tail tho. We are looking foreward to a visit from Grandma and Grandpa Webb on mother's day weekend! Baby Cole loves his Grandmas and Grandpas very much! Tomorrow is national prayer day (Always the first Thursday in May). In addition to your prayers for our armed forces who are bravely fighting for freedom, please add a few extras to your list for us. First, as always, Pray for Baby Cole. We know that SMA will win, but we pray that he is as happy and as comfortable as possible until an angel takes his hand. Also, please say and extra Prayer for Marshall's mom and dad. They are going through and especially hard time right now. To read more about Marshall and his family please visit www.marshallpotter.com We also welcome any visitors to read daily (well almost daily) thoughts in our online journal on Cole's website and please sign the guest book. I haven't had the time to update the photos yet, but hopefully I will do that soon. Thanks for all the help and support. Kristin, Dan and our little man Cole
TodayIt's been a busy couple of days. Mom and Dad came on Friday and it's a good thing. There was plenty of cleaning for Mom to do! I think our house would fall in around us if it weren't for her. Thank you Mom! Also, on Friday, I got a hair cut. The first one in months. I went a lot shorter then I usually do, but it looks good I think. Dan likes it too, and he usually doesn't like my hair cuts. Saturday was rough day. Cole's heart rate was sky high and his oxygen levels were running VERY low. He usually takes a dip on Saturdays and we are trying to figure out the reason. He had to spend the whole day on his stomach because this was the only positon that kept his heart rate down. Tummy time is not Cole's favorite position either. Dan and I did a little running around and spent money. We bought Cole a couple of new videos, Baby Neptune and a Disney sing along, which he hates. Not veggies you know. I can't believe how addicted that kid is to Veggie Tales. They put him in a total trance. I'm happy there is something that he likes. On Sunday, Missy, Mike and the kids came over for our Easter Egg Hunt and barbeque! Katy and Noah had fun running around the yard collecting their eggs. Noah had about 4 to Katy's 1. It was very funny. Cole laid in the wagon in the shade (no more sunburns you know) and watched them. We took some pictures. Hopefully some of them will come out. Cole had a great day on Sunday.
TodayToday wasn't much better than yesterday for Mommy. It's been Bad Attitude Central for the past couple of days. Daddy was in trouble from the minute he got up this morning and Loki (dogger) had to go to the vet. While I was taking Loki to the vet, Dan got called for an emergency in Memphis. Thank goodness for Aunt Zan. She came over and stayed with Cole for the evening, so I could get Loki checked out and Dan could go to work. Everything always happens at the same time. Thank goodness for Pat Pashia (cole's massage therapist). She was giving Cole his massage when the call came from Dan's work and stayed until Aunt Zan could get here while Dan got packed up to go. We appreciate all your help today Pat. It really means a lot to us. Cole has 9 quilt blocks done so far. I'm terribly excited to see it getting done. I probably shouldn't look at the work in progress, but I can't resist. I'm just like when I was a little kid and peeked at all my Christmas presents. I guess I'll never learn. I love you little Mister!!
TodayOh what a day! It makes me want to pull out my hair. Loki dog is sick. (this is the last thing I need today) Cole and I came home with new splints today. Two different kinds. I wish I could say that I am happy today. But I just cannot get in a good mood. Hopefully tomorrow will be better. Stay strong Baby Cole! We love you
TodayI feel like the worst mom in the world. I mentioned that we took Cole out for a wagon ride yesterday and he has a nice little sunburn on his left cheek. You can totally see the white line where his sunglasses were. We didn't even have anything to put on it this morning other than baby lotion. Jeez, I guess we're picking up some Water Babies and some aloe today at WalMart. Another mishap this morning happened when we were venting Cole. His button had a HUGE hole in it and was pulling out. I scrambled around getting everything ready to change it while Dan held it in place. I hate changing his button. The other one was leaking out the center anyway, so it will be way less messy and probably time to change it. Now we have a mickey (the other button was a ross). I hope the valve doesn't leak as soon as the ross. It was only a matter of days before the ross started leaking out the center of the button. We have never had much leaking out the stoma, which is good and Cole's site looks clean and healthy. No granulation tissue or irritation. Let's hope it stays that way. We have PT this morning and then this afternoon we are going to John's to get Cole's hand splints checked. I think he's getting too big for them, especially since his hands tend to have some swelling at times.
TodayToday we had a visit from Michelle, Will and Joey Bertetto. For awhile it was rather chaotic when all the kids were here, plus nurse Laurie! I'm surprised she even lets them come over since our house is SO NOT child proof. We took Cole for a ride through the subdivision in the wagon and he fell asleep during the walk. Rather than wake him up again, we just carried the whole wagon into the kitchen and let him finish his nappy there!! We are researching adaptive strollers and have a demo for a Kid Kart and a Tiger on Tuesday evening. We've asked Aunt Zan to come over to help us pick one out. Hopefully, the approval will come smoothly and quickly. We are still waiting for approval for our bath chair. Sometimes things take so long to get approved. There are now 8 completed cross stitch blocks completed of Cole's quilt! They are so beautiful and I cannot wait until we can see the finished product. I know that this quilt will be so special that it will not be used, except maybe for pictures, but I do not want anything happening to it. We spill too much around here for normal use! One of these days I'm going to write down all the chance meetings and "small world" coincidences that have happened since Cole was diagnosed. There have truly been alot of them. We've also figured out that when Cole all of a sudden breaks in a sweat and his heart rate rises, that he is throwing a temper tantrum!!!!! If he were a normal child he would probably be kicking and screaming on the floor!!! This was a too too funny realization we had the other day. Our little man is so stubborn. Maybe he has more of his momma in him then we once thought.
TodayCole had an excellent day today!! His O2 sats were up up up. (I'm almost afraid to type this) I picked up some of his easter pictures and although they didn't turn out exactly how I wanted, they still are pretty cute. I also mailed off Mom's quilt block today. I can not wait to see his quilt! Cole can hold tongue depressors very well, so today Dan and I made Cole some special tongue depressors with sparkly pon poms and colored feathers glued on the end of them. Cole really liked them and liked the way the pom pons felt when he touched his face with them. When I tried to get him smiling at them on the video, he would only look at me as if to ask "Momma, what ARE you doing? I'm not going to smile while you have that in your hand" As soon as I turned it off, he started smiling again. Stinker!!
TodayHAPPY FIRST EASTER MR. COLE!!!!!!!!!!!!!!!!Cole is having a MUCH better day today. His first EASTER was very pleasant. We took picture of Cole with his Easter basket, but I totally forgot to shoot any video. I am so bad about bringing out that video camera. I debated whether he would be allowed to lick a chocolate bunny, but after yesterday, I decided it wasn't worth the risk of increased secretions and the possibility of allergies, especially not after yesterday. Tonite, Daddy read Cole stories, Moo Baa La La La and three little piglets. He liked it for a little while, but it was so past his bedtime, so we put him down for the night. My sister Missy and her family were supposed to come up after church, but they think Katy might be coming down with something, so we played it safe and they stayed home. That was very disappointing, but if she doesn't get sick we will do our easter egg hunt next weekend. Something for us to look foreward to this week. Other things to look foreward to this week. We have a bath chair on order. Hopefully that will come in this week. Cole still LOVES to take baths and hopefully we can submerge his lower body in the tub, without getting his head wet. He still has to lie almost totally flat. We are also looking into an adaptive stroller for disabled children so Cole can go on outings. As soon as we figure out which one is right for Cole, we want to bring him to the zoo. We are supposed to get Cole's Easter pictures from Target back on the 29th and also see the lung doctor that day. I'll have new pictures soon. Happy Easter Again Cole. We love you little man. Stay strong for us baby boykie!!
TodayCole gave us quite a scare today. We were up in the kitchen and heard his alarm for his pulse ox sound. We went down to see what was going on and his sats were in the 60s, he was gray and his lips were blue. He was choking on his own saliva and we suctioned and suctioned him until his sats came back up. His sats have been low all day since that incident. He also has not been sleeping well today, not like he usually does. That worries us too. We love you little pootie head. Mommy and Daddy
TodayGood Friday. We visited with Catherine this morning and her mom. They were so very nice and brought Cole some balloons, which he loves! Dan and I enjoyed talking about her son, James and seeing pictures of him. Cole was on his best behavior (thank goodness) and was very entertained seeing new faces. They took pictures with the digital camera and we can't wait to see them. After all the excitement, Cole was exhausted. He should sleep well tonite. We finished Mom's quilt block today. It looks beautiful! Thank you Sandra for designing it for us. I can't wait to send it in to Linda on Monday. I have seen the first 4 blocks for the quilt and it is going to be so beautiful!
TodayWhat a busy week! Yesterday Cole went to Mommy's work for a luncheon. Our office manager is retiring and it was a very important day! It took us 40 minutes to pack the car for an hour visit! Cole is a portable hospital, feeding pump, suction machine ect. It was worth it. We had a good time and Cole met some people he has never seen before. Today Cole spent the whole day with Daddy. Daddy had been working ALOT and it was a good day for both of them. Oxygen levels have looked good for the past 2 days and secretions were less. That's a good thing. We are looking foreward to a visit from Catherine Giroir tomorrow. She is the Mommy to Angel James Patrick. His angel day is December 14. He was only 2 weeks younger then our Cole. We are very excited to meet her.
TodayMr. Cole was boycotting sleep today. He only had an hour nap or so the whole day. He does NOT do so well on no sleep. His nurse, Lori came over today and weighed him and measured him. For his 8 month weigh in he is, officially, 24 pounds 12 ounces and 31 inches long!! What a big dude!! We are continuing to adjust to the chest percussion vest. It's not Cole favorite thing in the world, but he's getting used to it, I believe. It's so much easier then all the clapping we were doing on him. Sats are a little better today, but not as good as the weekend. We are still hanging in over here. We try to keep our chins up and our eyes dry. Sometimes it's easier said then done.
TodayToday starts our BUSY week and What a busy day! Cole was so exhausted last night, he slept very well until almost 7. We had a typical morning. At noontime we had a visit from Susan Hoeman and her daughter Kristen. Cole was on his very best behavior, a little sleepy, but pleasant nonetheless. We played with our arm sling with our "gross" ball and with marbles, pushing them around with his fingers. We played with Miss Sallie in OT and then went down for our afternoon nappy. In the evening time, we had a bathy and then went nite nite. Sats have not been as high as last week, which is discouraging and secretions were thicker also. Hopefully it was just an off day and things in that respect will be better tomorrow. Over all it was a very pleasant day.
TodayApril 13, 2003 HAPPY 8 MONTH BIRTHDAY MR. COLE!!!!! We love you so very much that sometimes it hurts. We had a very good day today. During our picture disaster yesterday I said, jokingly, "Too bad we don't have a tv in here and he could watch Veggie tales." Grandma Linhardt came over last night, toting a tv/vcr combo for us to take to the photo shoot today. She's totally insane, but we love her anyway. Well, it turns out that it was a GREAT idea. Cole watched his tv while getting his picture taken and was MUCH more pleasant. We even got a smile for a couple of pictures. He didn't smile for us, only for Cedric the Scallion. Go figure. I can't wait to get the pictures back. I won't mention what they look like, we will just have to wait and see. After all the excitement, Cole came home and slept and slept. Being a model is hard work! HAPPY BIRTHDAY AGAIN, BABY BOYKIE!! Mommy and Daddy think you are the best little boy in the world. Thank you for being our little angel.
TodayApril 12, 2003 We took Cole to Target today to take pictures for his 8th month birthday (TOMORROW!!!) in his easter outfit. It was disasterous. He cried and cried. He wasn't having any part of it. It didn't help that he wouldn't take a nap this morning and was getting hungry. We also tried out the new wagon (Thanks Grandma and Grandpa Linhardt, Aunt Missy and Aunt Zan!!!) and it works very well. He looks very cute in it and there just might be enough room for the suction machine and pulse ox if we need to take them with us. It even fits in the Tribute if we fold the handle down (BONUS!!) We are going to try to take it to the zoo this week, weather permitting. We have another appointment scheduled to try pictures again tomorrow. Hopefully that one goes a little better.
TodayApril 11, 2003 Aunt Missy was in town last night for a meeting and came over for a visit. Cole was already sleeping, so she didn't get to play. Cole has been super chatty today, but not when I turn on the video camera. When he sees it he's very quiet and just looks at me like "What the heck are you doing, Mom?" His parents as teachers, Kim, came by today and brought Cole a prickly gelly ball yo yo which he likes go curl his fingers around. I'm glad he likes it. Dan and I had fun playing with it too. Grandma and Grandpa Linhardt are on their way here, but Cole will probably be sacked out before they get here. Cole has been looking forward to the visit all week, Mommy too. The house is always cleaner when Marilyn is in town. It looks like it's going to be a busy weekend.
TodayApril 10, 2003 Happy Birthday Cousin Noah!!! We are so happy you are 3!!! I can't believe how quickly time flies. It seem like just yesterday that Noah was born, and now he is a boy!! Unfortunately we do not get to see the cousins nearly enough, but it is so hard to travel with Cole, so we will just have to catch up on pictures. HAPPY 3RD BIRTHDAY NOAH!!!!!
TodayApril 9, 2003 MR. Cole Today was a busy day. We played with Miss Tracy in the morning and then took a long long nappy. The airway clearance vest, or as mom calls it, the "shaky" vest arrived and we learned how to use it today. It's not too much fun, but we will tolerate it. Just make sure you have the Veggie tales going when you are doing it, or I will not be happy. Aunt Zan and my Cousin Lesley came over in the evening time to play with me. I was very excited to meet my cousin Lesley. She's very funny. After all that excitement, I was very exhausted and fell asleep nite nite on my daddy's chest. It's not easy being me, although over all I'm doing very well. My heartrate is lower since starting the nebulizer and my nurses say my lungs sound clear. That's a good thing. I Love you all very much. Baby Cole
TodayApril 8, 2003 Twice in one day. This probably won't happen too often, but the novelty of the journal hasn't worn off yet. Today I learned that Gary Sinise (LT. DAN!! from Forrest Gump) and Jeff Perry, the co founders of Steppenwolf Theatre, have made a radio public service announcement for SMA. That's always a good thing. Also, we joined FSMA today (about time but we have been so busy). I learned that you don't have to have a child with SMA to become a member of this organization that is so essential to these children. Membership is only $25 a year. I beg you. Please please consider this as one of your charities. www.fsma.org Cole and I had a GREAT day together. Daddy was working all day, but Aunt Zan came over to play. It was good. Cole had a lot of smiles this afternoon for mom (few and far between these days). Even tho it was a rainy and cold day, we brought the sunshine in. I love you baby Cole! Mommy TodayApril 8, 2003 I tried to keep a paper journal, but I'm not very good at writing in it. Maybe this will be a little easier for me. I guess I better sum up, (not like we would ever forget). August 13, 2002 Dan and I gave birth to the most beautiful baby boy, Cole. At 6 weeks, while treating thrush, the doctors discovered that Cole had SMA. January 6, 2003 Cole had his g-tube and fundoplication surgery. He came through like a trooper. February 8, 2003 we had to put all the babas in a box because you no longer had the ability to swallow. March 11, 2003 went to the ER because of your first cold. Had chest x-ray and showed pneumonia and partial collapse in right anterior lobe of the right lung. April 8, 2003 TODAY Doing well so far. Started Nebulizer treatments with albuterol which have helped the o2 saturation levels. Have a percussion vest for chest PT on order and a new bath chair as well. Eagerly awaiting those to arrive. Cole continues with PT, OT and his massage therapy. His nurse Lori, visits every week from nurses for newborns. Cole also has a nighttime nurse. Nurse Lisa sees him Sunday through Thursday and we are hoping that Nurse Barb will become very consistent for us. Cole is still a very good natured baby. He loves Veggie Tales and bath time. We love you so very much Baby Cole!! Love Mommy and Daddy |