Yeah..one day closer to warm weather and being able to get out of the house!! We
had a great day, no coughing (she still has to go to bed but we are praying!) and she has
been soon good. She started off the day helping me in the kitchen with making her
formula then watching some of her shows while we stretched then into the laundry room with
me to clean and organize. She spent some time upon my shoulder and in my arms with
bipap on. She took a 3 hour nap this afternoon and mommy went and layed down and
took a nap with her for half of it so it was nice. She had just her regular boringly
wonderful day!!! Hugs to all! Me again...just thought that I would add NO
COUGHING TONIGHT!! It was wonderful to be able to get through the whole day with
none of that nasty coughing. She had a good night, Pappy came to see her and brought
her a movie, and she watched her video's, danced with mommy around the house, and walked
around on my shoulder for a long time. She seemed happy and we did the inex and she
didn't destat like she has been doing either. That doesn't mean she likes it at all
but we had a better night with it anyway. Well, my husband is actually home tonight
so I think I will go spend some quality time with him!! Love to all and God Bless.
March 2 Well, it seems like we might be back to our regular scheduel now..she hasn't had much coughing except when she gets to many secretions in her mouth. She has had a great day, and seems to feel great. I got to get out of the house for about an hour or so to run to Walmart for a few things and it was nice. I know I am taking a chance going there but I just had to get out of the house and go shopping!! I got some egg carton bedding for her crib (I am going to get her used to sleeping in her bed so I can stretch out some) and for places around the house too. She is laying watching her Elmo video and of course I got her a new Elmo video at Walmart too plus some other things too. I got her some things to hold in her hands but she just throws them over the edge of the couch, counter, whatever she happens to be on at the time. We didn't do much today really but just hang out and of course daddy watched her when I ran to Walmart (she was taking her nap when I left). Brian is at a friends bachlor party tonight so I have the evening to do whatever once I get Lily into the bed. I talked to a friend tonight and I just want to share something that she reminded me of....We of course are praying for a miracle for Lily and all our SMA kids and I know it is going to happen too! I have been worried about it being able to help our kids that are older, and at what age is it going to help our kids and sorta expressed it to my friend and she told me that when the miracle comes all all our kids will benefit..the older ones, younger ones, etc....why? Because God doens't do things halfway, he does them all the way. I am glad that she reminded me of that..sometimes it is easy to get caught up in the whole SMA thing and be willing to accept something less than perfect but that is true..God does everything well and I will not accept this life with SMA as a final thing. She has it now but she will not always have it!! God is good and sometimes he sends people across your path to remind you of just how good and awsome he really is. I have been having some bad times with all of this expecially with Lily and her coughing but he never lets me go! He always brings me back to him!! Well, better go attend to my special, wonderful and unique baby!! Love to all!!
March 3 Well, I am back!! I am feeling so much better now that my coughing seems to be over with..that was awful! I had a pretty good day today playing with mommy. She made me a bigger place in the kitchen so I can see the TV as well as help mommy with whatever she is doing (she always seems so busy doing something in there). Mommy also made me a bigger place for the laundry room and living room too. She cuts up those egg carton things for me to lay on and I can just play and play. I took a good nap this afternoon then got up and watched some of my video's then mommy put the bipap on me in the living room before bed and we got to snuggle there until I fell asleep then she popped off the mask without removing it from my face and ran back to the bedroom and put me on my other bipap back there..I barely even stirred! It was so much fun to just lay in mommy's arms like I used to. I kinda like this bipap thing! Tomorrow is my boyfriend Colin's; www.our-sma-angels.com/colin; 11 month birthday so he is starting on his 12th month!! Also today is my friend Skylar's 21 month birthday; www.our-sma-angels.com/Skylar; so happy birthday to her too! It is really cold here tonight so mommy has me snuggled in the bed with her tonight so I think I will catch some zzzzzzz's now...goodnight! I had a great day with Lily..I got to sleep in thanks to Daddy then I got up and we just hung around but what a good day it was. Thank God she is doing so well and not coughing anymore. We are having a hard time with her laying on the couch now, she seems to not be able to get her secretions out as well on the couch so we made her a place on the coffee table and I guess she will just take it over now so I won't have a place to put my things on it..oh well. I would rather her be comfortable than having a place for me to put my things. She has a ton of secretions but she still doesn't have swollen gums so we are not sure where they are coming from!! Maybe she is teething and her gums will begin swelling soon....we can hope anyway. Well, I am sleepy so I will be going to bed!! Hugs to all and Happy 11 month Birthday Colin!!!! ( www.our-sma-angels.com/colin ).
March 4 Having another good day today! I feel good and have had a big day today too. We got up this morning and after eating mommy gave me a bath and I got to play in the water and loved it. Then mommy had to get me out and get me ready for Miss Beth my PT. I played with her for an hour and then I was so tired that I fell asleep on my belly. I took a little nap then mommy took me into the kitchen after feeding me again and she put on Sesame Street for me and let me chew on somethings and kept putting yummy stuff on them. Then before we knew it it was nap time!! Mommy made me sleep in my own bed for nap time so I didn't sleep as long as usual and now I am watching my video of Big Bird. Lily did great for Beth today, she was reaching out and touching things (supported of course) and also showed Beth how she can reach up and play with her hair and ear. She also showed her how she can play with her fingers too. Beth said how much improvement she feels and that Lily is moving her legs alot more now too. They got some good things done today and alot of good playing done too. I worked on Lily's oral stuff too. I have some different things for her to put into her mouth now and I dip it in the baby food (today was applesauce) and let her roll it around in her mouth and bite on the stick. We then read alot of books and played with her hand toys. She did good tonight, a little grouchy but not to bad. She watched her movies and then came over on the couch with me and played in my arms. Then before we knew it it was time to do our cough machine then get ready for bed. We put the bipap on her in the living room and she once again snuggled in my arms and fell asleep then I took the mask off and took her back to the bedroom and into bed. I put her in my bed again, I will let her sleep for her naps in her crib and in my bed at night until she gets used to sleeping in it again. I have mixed feelings about her sleeping in her crib but I know that I need a good night sleep and to be able to stretch out all the way. By the time we go to the doctor to get her button for her g-tube I want her to be able to sleep in her crib because I can vent her tube at night that way. Well, I am off to bed too...Happy 11 month birthday Colin!!!!! Hugs and kisses to all!
March 5 Pretty normal day except for my shots today. Nurse Deanna came to give me my RSV shots and that was kinda yucky and made me grump tonight but it got me onto mommy's shoulder and into her arms tonight too!! Plus because I just wouldn't settle in for my nap this afternoon mommy had to take one with me so we got to snuggle too. Had a pretty good day, mommy let me taste test somethings today too and that was yummy! We had a pretty good day all in all. I got to talk to my Noni on the phone since I haven't seen her in forever!! She has been sick and hasn't been able to get around me for a long time now. It has been hard on her and me, I like to play with my Noni and she helps mommy out too. Well, we hope she is over this soon so she can come back over and play with me again. Goodnight! RSV shots today...poor baby. She did good though and only cried for a minute then it was over with. She has been a mommy's girl today and that was nice too. She got held alot today and yes we did take a nap together and that was nice too. She just wouldn't get settled in without me so I ended up sleeping the whole time and it was WONDERFUL!!! I get to get out for a while tomorrow afternoon, I have a doctors appt. so.....maybe I can get a few things done while I am out too. Lily needs some new clothes so if I have time I think I will try and get her some. Tonight she feel asleep again in my arms with bipap on...gotta love that machine! She just loves to fall asleep like that, and it makes getting her to sleep so much easier too. Well, I better get...got some things to do before bed. Hugs to all!! I would also like to ask all of you who read this to keep a friend of mine and his child in your prayers. His name is Robert and his son's name is Peter. They are from Polland and Peter has SMA. They have 3 other childen unaffected and one of them is Peter's twin. Peter now has pnemonia and they are new to all the things like BiPaP, cough machine, suction, O2 reading's etc....so please keep them in your prayers that they get through this fine. I have been keeping in touch with them and trying to help them as much as I can with what they need to be doing. Anyway thank you all for all the prayers not only for myself and Lily but for all our SMA angels www.our-sma-angels.com You can check out more of the angels by clicking on the underlined site above. Hugs and kisses to all!!!
March 6 Another good day today! I was really good today too, not to much fussing. Mommy had a pretty busy today but still had plenty of time for me. I did the usual stuff except that I got to sit in my car seat today with the bipap on. I also got to sit in my swing but I couldn't get comfortable in it at all so mommy took me out and let me just play with the bipap on. Then mommy took it off for a short bit while we did our cough machine tonight like we always do then I got to lay in mommy arms again with bipap on which I really love to do. Pretty nice! My noni came by tonight too, and it was funny, she wouldn't come in because she has been sick so she stood outside just looking at me through the window, she said she needed to just see me!! It was funny. Daddy had watch me this afternoon while mommy had to get our for a short bit. I looked at daddy weird when he came for me when I woke up from my nap. I expected mommy and her comes my daddy! We had a pretty good time too. Well, better go..I am sure mommy wants to talk. Ok, ok, I had a busy day...lots of phone calls from friends but I always enjoy talking to them all. Nothing special happened today, but of course everyday with my sweet Lily is a special day! She was very good today and we had alot of fun. This morning while she was in the kitchen with me she was staring at something across the room and I tried to figure out what it was she was looking at but there was nothing there..sometimes she does that, she looks at something but I never know what it is. Guess what I think it is? I think she sees her guardian angels and maybe they are talking to her or something? Who know what our babies see...but I know she has angels watching over her all the time and so it would make perfect sense to think that that is what she is looking at when she stares off...it is neat to think about. She had her tastes today, and her stretching, and her play time....we had a great day!! Goodnight all and hugs to everyone!!!
March 7 What a fun day it was. Mommy took me outside for a short while and it was so much fun to get out of the house! I got to ride up and down the driveway in the Kid Kart and it was just to bumpy so mommy got me up in the grass and rolled me around. I did pretty good but I did have one episode but it wasn't to bad and mommy got it taken care of really pretty fast. I also got to lay on the trampoline and look up into the sky which was pretty cool. Tonight when I got up from my nap my mommy had me in the kitchen and we read lots of books too and that was fun. Then mommy got me ready for bed tonight and I got to lay in her arms again with bipap on. I fell into a really good sleep then mommy had to get me back to the bedroom really quick. I took a nap today again in my crib but I didnt' sleep very long. Mommy was going to put me in the crib tonight but she forgot (I bet she did...ha ha). Well, here is mommy.....What a beautiful day it was! We had a ball rolling around outside, it was a little windy out but I had Lily bundled up pretty good and had her hat on over her ears. We did have the one episode but it was because the suction machine wouldn't suction! In going up and down the driveway it knocked the hose loose that creates the vaccum but I didn't think to look at that right away. She needed to be suctioned and I couldn't get it to work and she just keep going down and down, then I looked and noticed the thing was loose and put it back on tight and suctioned her out and she was fine...whew! We rolled around the yard and looked at things, she watched Obie running around and barking, she got to lay on the trampoline and she liked that too. Then we came in and she took a short nap. We had fun reading books tonight and playing with her little toys. And I had a ball holding her again tonight..she is my sweet baby! I cannot wait until it is warm and we can get outside everyday! We can watch the trees, and just enjoy the great outdoors! We have a huge yard and it is wonderful to sit out there enjoying it. Lily loves being outside and now that she is older she will love it even more. Better get to sleep...
March 8 Mommy and I had a wonderful day! We played and played and we even got to get out for a short bit. I got to go outside in my wagon and roll around for a little while but mommy didn't keep me out to long because of the wind. Plus today I got to taste 4 different things, sweet potatoes, peaches, applesauce, and pears. I liked them all but my favorite is the pears. I didn't do so hot on my naps today so I was a little grouchy tonight but mommy didn't mind since we had such a great day today. Mommy also got me all dressed up today and made me take pictures too. I had on a really cute outfit, bib overalls and my hiking boots that mommy said she got before I was even born! They were hot pink and pretty cute but way to big for my little feet. She put me in them anyway and got my pictures. Mommy said tomorrow she was going to put me in something else and take my picture....geez mom!!! We did have a fantastic day today, actually we have had a great week! Lily is doing great and has been doing great with playing with me and not watching so much on TV. She loves to lay on the kitchen counter, and I get a chair and sit in front of her and put different things in her mouth and let her taste her baby food. She just drools it out and then I suction it out too. She also loves to have books read to her expecially the ones that have the little sound buttons you press with reading the book. She loves them so we read them over and over. Guess what else happened today? I had to change Lily's g-tube again!! I just changed it the other week but I got it clogged today with calcium powder and I couldn't unclog it so out it came and in went the new one. I am becoming an expert at changing these things, this is the 3rd since December! Well, better get to bed....God Bless all!!
March 10 Had a pretty good weekend, after getting outside 2 days it was pretty hard to resign ourselves to being inside again but we did it. We watched alot of video's, did alot of tasting, even read some books so it was fine. Even so we will be sooooo glad for summer to come so we can get outside! We miss Daddy too, he is staying with his sister because he is sick and we don't want to take the chance of Lily catching anything. We do miss him very much. Goodnight all!!!
March 12 I feel as if I am flying tonight I am so happy. I have so much to post but first let me start off by saying that Lily is fine and doing wonderful. She had a fussy day yesterday and we couldn't figure out what was wrong but she just seemed out of sorts...teething maybe. Today she was fine and had a good day. I got a little depressed tonight as I watched her laying there watching her video's feeling bad that that is all she can do! It is so hard to watch your child not be able to do all the things she should be doing and sometimes no matter how positive I try to be it just gets me down. I know all the things that she SHOULD be doing right now and I feel just helpless but of course I am not, I do have God and he sustains me. Anyway, I was feeling kinda yucky and I got a call from a friend of mine with a child with SMA like Lily. We were talking about things and she informed me of some very good news about a possible cure for SMA. I can't go into details because I don't understand all of it but she sounded so positive and excited, and the person that told her was very excited too. Hopefully I can get all the information and be able to post it here for you all to read but for now just know that we are getting SO CLOSE!!! I know a cure will be here in Lily's lifetime and it is so very exciting but we all need you help too. PRAY PRAY PRAY!!! Lily isn't the only baby who needs this cure, there are thousands of precious babies with SMA as well and they need a cure just as much as Lily too. I will certainly be hitting my knees for this....WE NEED THIS!! I want to see Lily crawl and walk, be able to play with toys, and get dirty. I want to see my child be able to sleep without something attached to her face to help her breath, and I want her to be able to cough without the help of a machine. I want her to be able to taste many foods and enjoy swallowing them as well. But most of all I want her to be able to crawl up in my lap, throw her arms around me and hug me as tight as she can! So all I can do is ask for Prayers for this....and donations to the places that are working hard to find a cure for this. Well, I think I have rambled on long enough but as I get more information on this I will certainly post it. It is exciting to think we are getting closer and closer with this...also...this cure will help other Motor Neuron Diseases as well such as ALS or Lou Gerigs disease and others. My husbands grandfather died of ALS so I know he would like to see an end to that disease as well as SMA. Keep on praying and we will too!! We will continue to pray and fight this disease with everything we have!!! Our kids are the hero's, they continue to fight!!!! Hugs to all!!!
March 13 Hello its me again, sometimes mommy takes up all the time and I don't get to tell you about my day. I had a pretty good day, this afternoon mommy took me outside for a bit and I fell asleep so she brought me back in to bed. She was going to take me back out again when I woke up if it was warm enough but it wasn't so we just stayed inside and played. When I woke up it was time to eat so mommy let me lay in bed and watch my video's then when I was done eating mommy carried me around on her shoulder while she did somethings then she let me swing in my swing for a bit but after about half an hour I got kinda choked up so mommy got me back out and put me back on her shoulder..that is where I wanted to be anyway. I fell asleep....oops! When I woke up mommy got some toys out and we played for a while and it was fun. Mommy was happy because I actually played with the toys with mommy's help. It was fun...now it is time to eat again so I guess I will get to watch some more of my video's...I hope it will have Elmo in it! It was a great day, after my excitement last night over the news I was just in a really good mood all day. I have a vision of my sweet Lily playing in the dirt, her little overalls are dirty and she has her pretty little curls messed up by the wind. I just imadgine her running around outside under the trees playing and me having to keep up with her which I would love to do! We can swing, run, swim, and do all the things that she is supposed to do. It will be so exciting!! I know it is going to happen, I am not sure when exactly but I feel it is closer that anyone thinks! We all must have hope because without it you have nothing. It is going to happen keep believing!!! My job is just to keep her healthy and happy until it is here..that is the job God gave me to do and I am going to do it to the best of my ablilty! She is my life and I will do everything I can to keep her healthy and happy. Thank you everyone for your thoughts and prayers...KEEP IT UP!!! God Bless!
March 14 Another good day...I love good days. She woke up in a great mood and was in a great mood all day long. This afternoon I took her outside to sit on the front porch...I got all her stuff set up, she was supposed to be eating so I took her feeding pump outside, she was laying on her chair and she was not happy. She cried for the whole 15 minutes out there, we finally had to bring her in! She was happy then laying there watching her Sesame Street and having me in her face letting her "eat" her applesauce. When her feeding was over I got her jacket on again and took her back out and she was fine, she was snuggling upon my shoulder. We stayed out for a while then came in for her nap. She slept for 45 minutes on bipap then woke up and I took her bipap off and she fell asleep again for another hour. When she got up we watched her videos for a while while she had dinner then she came into the living room and we played for while...then back up on my shoulder and there she stayed until bedtime! She loves snuggling with me on my shoulder and I love having her up there too. I love days like today....God Bless!
March 15 I thought I would take a moment while Lily is napping to tell you a few funny stories about sweet Lily. As everyone knows Lily loves Elmo..she could watch Elmo around the clock as long as it is just Elmo. She has some of the Elmo's World videos and they contain a couple of characters named Mr. Noodle and Mr. Noodles Brother Mr. Noodle. Well, the little control girl that she is as soon as Mr. Noodle comes on she starts fussing, and keeps it up until the Noodles are off of there and if they show back up she starts fussing again and then might even go into a full fledged cry with tears and everything. Also on a couple of the Elmo videos she has they have some songs that these pigs sing...she hates the pigs! She will fuss and cry and carry on until they are off the TV then she is happy again. She is such a mess! Another dreaded thing is if I decided that I want to watch big people TV. You know, sometimes I can only take so much Oswald, Elmo, and all the other things that she watches so the other night I decided that she was going to let me watch big people TV in the living room on the big TV instead of trying to watch something in my kitchen (which is joined to the living room so I am not far away) on the little tiny TV! So I layed her on the couch, pulled out some toys and then turned the TV on a program that I wanted to watch...well it didn't take long for her to start fussing, crying, and complaining! And all this after she had watched all her movies and it was 10 at night!!! She is rotten! She is so funny and I love her so much even when she is fussing and being spoiled rotten! Today she has had a great day again. We got to go outside for a while with her upon my shoulder and walk around the yard, she loves it. She fell asleep and so she is now taking her nap (without bipap again!) so hopefully she will get some sleep. She would live upon my shoulder if I let her she loves it so much and I am only too happy to let her stay upon there as long as she wants. Well, the nap didn't last long enough so she has been grouchy all night. She got up and watched videos then she came into the living room and had her dinner and Pappy came over to see her. She fussed and cried and tried to go to take a nap early so I woke her up by inexing her then we layed in the bed and watched a video together and she started crying and crying so I put her bipap on and to bed she goes!!! She is sleeping peacefully now. We are in the mist of some storms so I have all our backup batteries ready in case of a power outage but hopefully we will make it through without it. Better go...God bless all!
March 17 Happy St. Patty's Day all! Not really much to tell, things are going very well. Lily has had a pretty good but boring weekend. We loved the warmer weather last week and enjoyed our walks outside but it has been rainy, and cold here so inside we have stayed. We of course did our regular today, video's, taste tests, and reading books and even some toy playing in there too. Didn't have any visitors today either but Daddy did get to come home, he has been gone for over a week sick but feels fine now so he is back home again. I am going to get ready for bed, we have a big day with therepy's tomorrow so....Goodnight all!!
March 18 Busy busy day today...to much going on really. Lily had her PT Miss Beth here working with her then turned around and her Speech Lady came, Miss Mary, and worked with her too! She was tuckered out and ended up taking 2 of her nippy naps before 3 so it messed her up all day long. She did all the regular things today so not really much to tell. She has become awful about wearing her bipap for her nap, she wakes up after half an hour or three quarters of an hour and wants it off. I know how important the bipap is and she has no problem with it at night at all, in fact she looks forward to getting it on and falling asleep..she just has become a bear about wearing it during the day! She usually falls back asleep once I take it off of her in the afternoon and sleeps for a while without it. The nice thing is getting to snuggle with her without the air blowing in my face so in a way it is nice without it too...I can get right up into her face and just snuggle with her. Noni came over for a short bit today and will be back tomorrow to play with Lily. Daddy is back home again and it is nice to have him home. Lily's weight is also back up again, she is at 15 lbs. and 13 oz. now...I need to measure her too. Well, goodnight all!!
March 19 A horribly rough day! Really the day was fine but tonight was just horrible! We started off like every day, Noni came over and played with Lily. This afternoon Daddy and Noni went a picked up our Van at the shop (yea it is back!!) and I had Lily back in the bedroom trying to get her to take a nap..she finally fell asleep but only for about 45 minutes. When she got up Pappy came over to see her for a while and she was having her dinner. Well, Pappy was back in the bedroom with her and I was in the kitchen turning off the grill (I was making steaks) and I heard Pappy turn the suction machine on so went running back into the bedroom, by the time I got the catheter on it she was destatting fast so I tried to suction her out and she just dropped...70's, 60's, 50's...I had the inex trying to get some air into her and as long as I had it on she would go back up into the 70's but if I tried to take it off she would drop again back into the 50's...I told Pappy what to do with the oxygen and we got it hooked up to the inex and got it going, I finally got her back up into the 90's and got her calmed down and watching a movie..she was statting at 98-100% at this time. Pappy left and I was sitting back there with her and Lily got chokey again so I went to suction her out...HERE WE GO AGAIN!!! She starts dropping again so I yelled and got Brian up and I began the ritual again...she came up alot quicker this time and we got her on bipap and calmed down again. Everything was fine so I sat down on the bed with her again..once again she got chokey and I suctioned her out and this time she threw up out her nose (which is what I think she did the time before but it didn't come out) and so here we go again with the ritual...thank God she only fell into the 80's this time and we got her again on bipap and calmed down...then it was all over. She was fine the rest of the evening! We had been having such good days with no problems for a few weeks then we have to have a horrible day. I thank God that he is with me through all of it and he keeps me calm and collected! I never thought I would I have to be doing life saving things for my child and there is nothing more scary than that look she gets in her eyes as she is going down..she knows and I know, and the color of her skin and face just scares you so bad. I try to talk to her and get her to respond and I just keep talking to her until the "episode" is over with..I want her to know without a doubt that mommy is there with her and is going to pull her through this! I am fighing for her and she is fighting too! Once the whole thing is overwith I fall apart and have to go have my cry but thank God he helps me throught it and he stands there with me. I know that Lily, as well as all our SMA babies, have angels standing all around them! There are times that Lily's gaze will drift off (not having an "episode"..this is just on a normal day) and she follows something through the room but to my eyes there is nothing there..I believe it is one of her MANY guardian angels and I believe that she can see them all around her. Well, sorry I have rambled on so long....tomorrow is a huge day for us, she has to go to the GI doctor and be measured for her Mickey-button for her g-tube. Can you believe they have us come down there and get measured then we have to order the button from our home health agency THEN they want us to come all the way back and have them put it in? I told them NO WAY, we were already taking a chance bringing her down there this time, I don't want her to get sick or encounter some germs so I will be putting the button in or have a nurse come out and do it for me. I pray that it all goes well and that Lily has no problems riding in the Van tomorrow! Gotta go....Goodnight all!
March 20 Thank Goodness for a better day and evening than it was yesterday. We started out by going to her GI doctor to be measured for the button for her g-tube. Lily hasn't been out of the house since November so we were kinda nervous taking her. We had to load up all the equiptment (her inex, her bipap, her suction, her pulse ox, all the inverters for the equiptment....whew!) which took a while to do then getting her up and ready as well as myself. We got her in the van and into her car seat...she was smiling. She loved riding down to the doctors, no problems. When we got there we got all her equiptment loaded into her old stroller (I wasn't going to be without her stuff just in case something happened) then I carried her in the office with her talking and enjoying herself. We got up there and they took us into the back of the office and into our room (they don't make us wait in the waiting room with all the other kids because we don't want her in contact with germs) and the doctor came right in and did all the measuring and all. We were probably in the doctors for a total of 20 minutes and we were done (it is the only doctors office that they are very fast and get you in and out without making you wait) and back into the van where she went to sleep and slept the whole way home. She seemed to really enjoy herself and it was nice to get her out of the house even for a few minutes! Now we just have to wait for her button to come in and we will go back and have them put it in for the first time then from then on I can do it. She had a pretty good day, watching her videos and hanging out with mommy and Noni. She took a great nap (and I did too....ahhhhhhhh) for 2 1/2 hours and she got up refreshed and feeling good. Tonight I held her while she went to sleep (on bipap) and she just totally relaxed in my arms...it is wonderful. I am thankful for a good day after a day like yesterday. Goodnight all!
March 21 A good day....yeah! We had a visitor today, Lily's Great Grandmother (My grandmother..I call her Granny Bars). Granny enjoyed seeing Lily and of course got a kick out of all the fussing that Lily can do. She fussed and fussed until I finally put in her Elmo movie...she is so rotten. After they left we went back to the bedroom and got ready for her nap. She watched a few movies until she fell asleep then she took a 2 1/2 hour nap (ahhhhh it was wonderful). I have determined that she is going to wear the bipap for at least 2 hours through the day so even if she decides not to take a good nap she is going to have to sit back there with her bipap on anyway because I feel she needs that break in the afternoon. I noticed a few days ago that Lily's chest wasn't looking as good as it had been and I know it was due to the fact that Lily wasn't wearing the bipap for as much time, she wasn't taking good naps with it and we had gotten kinda lazy with the inex too. So for the last few days I have been making her wear her bipap more and using the inex alot more and her chest is already starting to look back to what it did before. Tonight when she woke up from her nap I decided to sew her some pillows so while she watched some of her movies I made her the rice "socks" only they aren't socks but tubes with rice in them. We will use them for postioning, and I made her a small body pillow that I can put between her legs PLUS she can "hug" it to keep her chest open when she is laying on her sides. We had been using stuffed animals for that and a seperate pillow between her legs. I am also going make her a few things to keep in her hands when she sleeps to keep her hands open and forming. I have been busy with the sewing machine tonight and I really enjoyed it too. Well, I better get to bed...God Bless all and thank you for taking the time to read and keep up with us!!!!
March 22 Well, a rough day for me but everything is ok. I hoped that I would be able to get out for a while today but it didn't work out for many reasons. I was upset because I am going "stir crazy" and am so sick of this house but I will get over it. I cannot imadgine what our kids go through being stuck inside all the time and not able to run around freely. Lily is such a trooper and is so sweet! She is such a strong and true hero! Anyway after being upset for a while I got to feeling better and am now ready to be positive! I want to get everyone excited about the cure that is coming SOON!!! I can feel it in my bones and I will always keep the hope alive! I think I will share with you a little bit about what I was sharing last week about a possible cure. I am not going to get "techy" or anything about it but try to explain things as easily as I possibly can but it will give you all something to pray about. There is a man who has been working with mice (which by the way we seem to be over run with here in our little farm house...they are dying by the dozens from the poison I keep under the sink....we could donate a few mice from here too)...anyway this man has mice with Motor Neuron Diseases, which is what SMA is along with ALS etc. Anyway this man has found a way to correct this in mice by using Cord Blood...umbilical cord blood which is full of stem cells etc. Anyway he hopes to be doing something with this in the next year so keep your fingers crossed. It might be something that the parents will have to fund themselves and pay something like 20,000 but it does look very promising so of course I ask that you keep this in your prayers because our kids need a cure. There are many kids with SMA that would benifit from this and that would be AMAZING to have SMA as a thing of the past. I long to see my baby girl be able to go outside and get her little hands dirty and be able to move her arms, legs, hold her head up and do anything that she wants to do! I know she will one day be able to do it and this could be the miracle that will do it. I would gladly sell a kidney to get the 20,000 this would take if it would help her. I would rip my heart out of my chest for her if I had to because there is nothing worse than watching you child lay there day after day and go through what our kids go through. As a parent you hate to see your child struggle at all and for our kids many days are struggles! I know that Lily will one day walk and do all the things she is supposed to do like climb tree's, take dance lessons, play with dolls, ride horses (if she wants to...that is a mommy dream for her) and there are so many other parents with children like Lily who dream those same dreams for their kids. I would gladly lay down my life if it would make her better but I can't...it will take a miracle from God! Continue to keep the hope alive with us! I will be looking at ways to raise funds for SMA too someday soon and I hope you all will support our efforts as well. I want to thank Debbie and Richard for stopping over today, sorry that Lily fell asleep when you got here but I thank you for her "loot" and for my locket....thank you Linda and Bob as well!!! I would also like to thank my Uncle Steve, Lily's great uncle for sending the beautiful flowers the other day and the balloons! We really have enjoyed them alot and brought a bright spot into our day. ALSO I would like to thank the Moose Lodge for donating to Lily's trust fund recently. There have been so many people in our county that have helped us out by donating money to Lily's trust for her medical needs. I would also like to thank our local Simpsonville store, Short Stop, for keeping Lily's box out and for all the people who have dropped their change into it and for sharing in that effort as well. I cannot thank people enough for being so generous in helping a little local girl out. God has been so very good to us and brought many people into our lives through this. Lily has touched so many hearts! I just wanted to take a moment to acknowlege those people. I would also like to take a moment to thank my Mom for always being there for me when I need you and to thank my Dad for being my hero all my life. I have the greatest family in the whole world...thank you to Travis my brother as well for always being willing to do anything for me. Well, I think I have rambled on long enough....I better save some stuff for tomorrow huh? Goodnight all!!!!!
March 23 Another day over and gone and another day of Lily just getting cuter and sweeter! She has us wrapped around her fingers so very badly it is so funny. Noni and Pappy I think go shopping for her more than they do themselves! Tonight they brought her over a "Party Light" or "Disco Light". It is really cute and shines all these lights all over the ceiling and walls plus the ball spins around and around. She loves it! Noni couldn't wait for it to get dusky outside to try it and see how she liked it...of course she did love it! She was facinated by it and then tonight going to sleep I put it on in her bedroom and she fell asleep watching the lights dance all over the ceiling and walls and listining to classical music. She was so very relaxed and precious with her little bipap mask on smiling away watching the lights. She fought sleep as long as she could but finally had to fall asleep. Pappy and Noni also bought her some more movies of course with Elmo in them. She is spoiled rotten but that is ok. Well, it was a pretty good day and I am heading off to bed!!!
March 24 I had such a great day!! I felt so good this morning and snuggled with mommy for a long time (she dozed off and on while I watched my movies) then she got up and started my breakfast. After I got done with my breakfast and got dressed Noni came over and we took a drive in the van for a long time! It was wonderful to get out of the house and mommy and Noni had such a good time out too. I was so good too, and did great! I dozed some then I would wake up and smile because I liked being out and about. The only bad time was when mommy and Noni stopped by a friends house to say hello and a man came out and peeked in the window at me and scared me and I cried and cried. From then on I wasn't too happy and was sorta fussy but we were really close to home and Elmo so it wasn't to bad but for most of the time I was really good. Mommy didn't even have to suction me at all! It was really nice to get out and very relaxing. I will let mommy talk now. When we got up today I just felt like it would be a good day to go on a drive but Brian (Daddy) didn't seem to interested in it so I was telling Noni about it and she decided that we would do it anyway! So we got the van loaded up (which is the hardest part..it takes a while to load up all her equiptment) and away we went. We were out for 3 hours and Lily did awsome! I am amazed at her, her stats stayed great, she sat in her car seat just fine (she is almost to big for it though..I need to measure her because she is getting so long, the top of her head is hanging out the top of the seat a little bit), of course we had the seat reclined alot but that is ok, and it was interesting..she was swallowing again. She wasn't drooling out of her mouth at all but she wasn't being suctioned either....hummmmmmmm? What is up with that? She was so happy to be out, her eyes just looked around at everything then she fell asleep for a while and when she woke up she had the biggest smile on her face! The only rough time was when we stopped to see a friend, Rhonda Murphy (who wasn't there) and Terry Murphy came out to see her and peeked in the window and scared her...from that point on she was only happy with the van was moving but all in all she did awsome and we will certainly do it again really soon. Our next big trip is going to be to Owensboro Ky. to see our friends the Burnetts and Lilys' friend Ethan who also has SMA like Lily. She had a good night too, she layed some on her belly and had her hips stretched and the rice socks that I made are WONDERFUL!!! I am making Colin some for his birthday too from Lily. She fell asleep watching her disco light and listening to Bach! Great day! Now I want to say a huge thank you too Brians Band mates for helping us out! It was very unexpected but very much appriciated by us and we thank you from the bottom of our hearts! We love you all! God Bless and have a great week...I know we will!!!
March 25 Hip Hip Horray, I had a great day! I woke up sorta rough but the day got lots better and I had a good day. Miss Beth came today to work with me but I faked her out again, she put me on her shoulder and I feel asleep the whole time she was here, he he. She went ahead and stretched me but I never woke up except when she was stretching my hips. She had me at a really big angle too and I never woke up, my heartrate stayed low, and my stats didn't drop at all. I did fine at it and it was really high too. When Miss Beth left I woke up and Noni was here to play with me! She watched my movies with me and talked to me. After my lunch my mommy took me back to the bedroom to get ready for my nap but I didn't want to go to sleep at all! Finally at 4:00 I started getting sleepy and mommy put my bipap on and I slept for about an hour. Mommy made me stay in my bipap for another hour (she said I have to wear it for 2 hours even if I don't sleep) then mommy took it off and layed on the bed with me and played with me. We laughed and tickled each other lots and I laughed and laughed out loud. I kept crossing my eyes and making mommy make a mean face and she tells me NO and to stop it but I keep doing it because I think it is funny and gets mommy all upset. Mommy and I got up then and I hung out on her shoulder for a bit until it was my supper time. Then mommy took me in the kitchen and I helped wash the dishes and talked to mommy while she made my formula and stuff. Then mommy got me some books out and read to me and let me taste lots of foods which I loved! I even held the Nuk brush I eat off of in my mouth all by myself and kept moving it around my gums. Mommy let me taste Sweet Potatoes, Peaches, and Bananna's. Then she got out some whipped topping and let me taste that and that was my favorite! I kept fussing for more and when mommy would put some more on my Nuk brush I would get all excited and get it all over my face. Mommy took some pictures so she will have to put them up. I had sweet potatoes all over my face with the whipped topping...mommy thinks it was cute. Then Daddy got up and played with me for a while so that Mommy could go up to the store really quick, he put me on his shoulder and sang and danced with me. I thought it was funny when he would bounce me up and down. Mommy came home and held me too and I fell asleep so she snuck me back to bed and put the bipap on me but I woke up again and wanted to be held again so mommy held me until 10:30 then she made me go to bed. I fell asleep watching my disco ball and mommy rubbing my hand and back. Lily did great with her tasting and was more vocal than I had heard her in a long time! She really loved the whipped topping and would yell at me to give her more. It was funny, then she would smile and get it all over her mouth. She did well holding the Nuk and moving it around on her gums too! I was very proud of her. Also this morning she threw up 2 times....gosh! We go through this every several weeks or so but I am not going to obsess about it anymore. I get her cleaned up, cough her, do CPT on her 2 times a day and that is it. She is fine and I guess she is just going to be one of those kids who does that. There is really nothing wrong with her...I think part of it is that she has been swallowing more now and sometimes it gets hung up in her throat and makes her gag. Plus she is teething some and that might have something to do with it too. I have a few reasons I think it could be but I don't know which one it is. When she does this throwing up stuff she always gets a diaper rash too and she has one of those too so it is something in her make up I think. I haven't added anything new to her diet at all so it isn't that. Oh well.....she is doing fantastic and I am so proud of her. Well, better get to bed all!!! Good night and God Bless!!!
March 26 Ok, Ok, why can't we just "smooth sail" for a long time? Poor baby girl ended up in the ER tonight because we thought she had aspirated badly. She took a nap this afternoon on bipap and when she woke up she started crying and before I knew it she was throwing up badly. She was still on her bipap and was just spewing it out through her nose so I took off the bipap and started inexing her quickly. Her heart rate was horribly low and her stats were following fast, she went down into the 30's for a while and I would get her back up but her heartrate was still staying low and she had no responses, no crying, and just a glazed look over her eyes. Then she would crash again and start throwing up again and again and again. At one point her oxygen level was reading 0%!!! It was horribly scary but I just kept praying and battling over and over and over again. We had the oxygen out and using it too, when the ambulance got there we were putting her bipap on to transport her out, we hooked it up to the battery so that she could wear it out. She was still on oxygen and her stats were looking better at this time. We got her to the ER and she was doing fine, I unhooked her oxygen and her stats stayed in the upper 90's from them on. They came and took her x-ray's which didn't show anything in her lungs but of course we are keeping a watch on her tonight. Dr. Camby, her Peditriatian, told the ER doctor that she was comfortable letting us go home and that she felt very comfortable with our care of her and knowing that if we had problems that we would go on and take her to Kosair's. They told us that if we were uncomfortable taking her home tonight that they would transport her to Kosair's Children's Hospital right then but of course I said no and that we would take care of her at home tonight and if we had problems we would certainly call 911 and get her there. It was very scary and I thought for a short time that we were maybe going to lose her, she was so grey looking and non responsive, she seemed to be going but THANK GOD he let us keep our little girl! THANK GOD he gives me the strength that I need when I need it. It is hard to watch Lily go through things like this but God has given me the calmness that I need at that moment. She is sleeping peacefully, her stats are 99-100% and her heartrate is perfect...I will certainly say an extra prayer for her tonight that nothing develops overnight such as Aspiration Pnemonia. Tomorrow we go to Louisville to have her g-tube changed to a Mickey-button so I pray that will go fine too. I am worn out and am heading to bed....goodnight all and please keep Lily in your prayers that we figure out what is going on with this and that she stays healthy and has no Aspiration from this episode. Thank you all!!!
March 27 It is 2:30 am while I am writing this so I will not make it long :) I have been in bed with Lily and woke up and decided to update you all with Lily. So far so good, no aspiration pnemonia but we will continue to watch her through tomorrow. She did have a rough day, not really bad but we had to get up, run down to the doctor and have her mickey button put in and she didn't really enjoy that. While there our Cough Assist machine broke (yes...one of our most expensive machines and one of the most important machines!!) so we did have to take some extra precautions like making her wear bipap on the way home in the van and thank goodness the RT met us at home and fixed it for us. She had one episode today and it was while she was being inexed, something she has never done so she ended up staying on bipap most of the day just for the break and rest and she did fine on it. We hope and pray that her troubles end very soon but God is STILL FAITHFUL and is protecting her and giving me the wisdom and strength for whatever comes my way. He must have some sort of great plans for her in her future!!! All I know is that Lily is a fighter and she bounces back great! I am proud of her and her fight so we thank all of you for your prayers and CONTINUE THEM!!! We will make it through all of these things. She is sleeping peacefully and I am going to join her again!! God Bless!
March 28 Ok Ok....do you know what the "best" part of all the episodes Lily has? (of course there arn't really good parts but keep reading...:) The best part is how it makes you appriciate days like today when things go smoothly and wonderfully! Lily had a great day and an even better night. She had a boring morning (yea..she needed it) then Noni came over and played with her and sat and watched her movies with her. Little turkey, her stats have been running low today sometimes then high too...well, she is moving her little toes so much it is making the monitor jump all around (of course I am not complaining about her moving any body part at all)...it seems like my Stat monitor is very sensitive to movements no matter how slight. There were times today she was going from 93-96% but I would look at her and she was fine, breathing good and looking good then she would get really interested in her movie and she would be at 100%. Of course I worried about it because I wondered if maybe she was developing pnemonia from her huge episode the other day but so far so good...and it has now been over 48 hours thank God!!! Ok....she got to go outside for about 45 minutes today and enjoy the weather, it was kinda breezy but we got her to a side of the house that blocks the wind and she got to watch the cars driving up and down the road, hear the dogs bark, and just watch the everything. She got to see the School buses droping kids off and everything. She enjoyed her time outside and once again WE CANNOT WAIT FOR SPRING AND SUMMER to be here for real!! We are going to plant flowers and go to parks and walk around. Of course we are looking forward to our trip to NJ to meet all our friends too...(we are not looking forward to the drive but we are looking forward to meeting all our friends with SMA too). Ok...then she went back forher nap and bipap...when she finally woke up (7 pm....) we layed in bed for a while and "talked" about things and Lily made all kinds of faces and was making me laugh so she kept making funnier and funnier faces and I would laugh and laugh! She was so funny! Then she got up and we went into the kitchen where she layed on the counter and did her tastes of things...and of course the whipped topping was her favorite and she kept yelling for more and more. Then it was time for her night feed to start so she is not laying watching her movie getting ready for bed. OH YEAH...Lily got some presents from her boyfriend Colin today and she LOVES THEM!! Colin sent Lily 2 rings..a hot pink one with a heart on it and a green one with a butterfly on it...she is amazed at them and loves to wiggle her hands to see them. It is the only thing I have ever put in/on her hand that she loves!! She is going to be a jewlery girl!!! Colin also sent her a Kelly Easter doll and a picture of him and Casey too. I am going to have to put up a page of Lily's friends for everyone to see...in fact I might start on that tonight. Anyway it has been a wonderful day and I am thankful for that. We have some theories on why Lily has been throwing up and all that but I will not be getting into that here...hopefully we will clear it up. Well, it is time for the bipap queen to head to bed so I will say goodnight too!!! God Bless!
March 29 Well, she is certainly being the bipap queen today!! We have had a rough day today again....she threw up and had 2 bad episodes with bad destats...in fact I was ready to take her to the hospital and get her Med-flighted out to New Jersey because I am to scared of the hospitals around here. She is stable and fine now but has been on bipap all day long because I think she needs it. We are really not sure what is going on, she seems to have a very upset stomach but we cannot figure out what is causing it at all. We will keep her bipap most of the weekend and doing 24 hour feedings too until I am sure she can handle more. If this continues we will need to check into other options to do. I just thought I would quickly update her page but I do need to get back to her..she isn't to happy about having to wear her bipap for this long but she is a trooper and she is going to have it off at 8pm for a couple of hours. We will see how that goes!!! I will write more later.
March 30 HAPPY BIRTHDAY TO LILY, HAPPY BIRTHDAY TO LILY, HAPPY BIRTHDAY DEAR LILY, HAPPY BIRTHDAY TO YOU!!!! Happy 10 month Birthday sweet girl!!! Today has been a good day, she has been on bipap most of the day but she is handling it very well. She is on a bipap break right now until 9 pm. but she is holding her stats really well and is doing great. She had some visitors today, her Papaw and Mamaw Barnett brought her out some easter clothes. Noni and Pappy came out too and brought her some 10 month birthday presents. She got a dancing Elmo singing the ABC's and another light to shine around the room. She is rotten to the core!! Tomorrow is Easter and we have her Easter basket ready, we got her some movies, a book, a couple of toys to hold, a chocolate bunny, and a sucker...we will see how she does with them. Well, it is time for the Cough Machine now!!! Thanks for all the prayers!!
March 31 Happy Easter Everyone! I had a great day today and got lots of presents for Easter of course. I had some visitors today too but I was only interested in watching my new video's and stuff. Mommy did get me all dressed up and took some pictures which kinda made me upset but that is ok I guess. I had to spend some time on my bipap again today but I really don't mind it to much..and it gives me a good break. Mommy said this would be my last day to wear it that much but that I will be wearing it alot more often then I had been wearing it. Oh yea..I need to tell you what I got in my Easter Basket!! I got 2 video's, Baby Newton which teaches me stuff like shapes, and I got Rollie Pollie Olie Easter Egg Extravaganza! I loved it! I also got a book about fish, a Elmo Balloon, a toy that I can hold in my hands, and some sugar free suckers to suck on. I got a chocolate Easter Bunny too but mommy told me I can't taste it for a while because of my butt problem. My butt hurts and mommy keeps putting this stuff on me that makes it sting. Mamaw Caroline came over to see me today, and then Noni and Pappy came tonight after I had gotten ready for bed. Well, I will let mommy tell you stuff now. We did have a great day, she had great stats, no destats, and was very happy. I have determined that part of her problem is that she doesn't wear bipap enough each day, she goes to bed late then when she gets up I take it off of her. She needs it on alot more then she has it on so I am schedueling her bipap time along with everything else. She will be wearing her bipap everyday from 9pm to 9am, then also for a few hours in the afternoon, nap or no nap. She can wear it at night watching her movies or whatever...she just has to have it on by 9 no ifs ands or buts!! I will be slowly increasing her feeds and letting her off of the pump a little more than she has had it for the last few days. I am also taking her off the baby food for now too until I can get her yeast cleared up. She has such a bad case of yeast on her butt! It is very painful to her and she also has been having loose "poops" too. I have been hydrating her alot more too. She is handling it all really well for now so hopefully we are getting it under control. She is sleeping in her crib now too because she is a big girl now. I vented her g-tube all night last night and it made a huge difference too..you could hear the air bubbling out of her little tummy all night last night. She did great sleeping in her crib last night and is doing great tonight too...mommy is the one having the hard time but I realize it is for the best..I need some good sleep too!! Oh yeah one more thing...I have really been faithfully using the "rice socks" to keep Lily's legs straight and to keep them from frogging out (SMA babies frog their legs out because they do not move them at all...it is hard on the hips)..anyway I made these pillows filled with rice to put beside her legs to keep them from frogging out and to keep them straight..then once a day I lay another rice sock across them to give them a stretch too and tonight I noticed when I was changing her diaper just how well stretched out her legs are getting. 2 weeks ago I was really worried about her hips and the fact that her legs wouldn't go together and lay flat and tonight I noticed she is getting closer to being able to lay her legs together and flat! It is amazing! Well, I need to get to bed...big day tomorrow with PT and all that stuff. God Bless and I hope everyone had a great Easter!!!
Lily's favorite things......
Favorite TV Programs:
Oswald the Octopus (Nick Jr.)
Rollie Pollie Ollie (Disney Channel)
Baby Einstein Video's (Expecially Baby Van Gogh and Baby Shakesphere)
Anything with Elmo in it (Best of Elmo and Favorite Songs are the best)
Playing with her hands and ear (left Ear)
Throwing her little Elmo off the couch and making us get it
Throwing anything off the couch and making us go get it
Peek a Boo
Laying in Mommy's lap with Bipap on
Sleeping with Mommy
Dancing with Daddy
Laying on Kitchen counter "helping" mommy do dishes, or make formula, or just hang out
Reading Books with Mommy
Tasting different food, my favorites are Apples, and whipped topping!
Crossing my eyes and making mommy "yell" no at me for it!
Making silly faces for mommy to laugh at
Looking at the rings my boyfriend Colin sent me...I LOVE jewlery
Lily's least favorite things
The Cough Machine (or Inexsuffulator)
To many people in the house at once
Being in her crib..even if only for a minute
Mommy not getting the right video on or not getting it on fast enough
Mr. Noodle on Elmo's World
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|December 2003||January 2004||February 2004|
|March 2004||April 2004||May 2004|
|June 2004||July 2004||August 2004|
|September 2004||October 2004||November 2004|
|December 2004||January 2005||February 2005|
|March 2005||April 2005||May 2005|
|June 2005||July 2005||August 2005|