|May 1st: (morning)
Entry by Sue, Casey and Colin's Mom I feel badly that I haven't been
updating as much as I could have. Colin has been a "needy" boy.
Actually, he crashed pretty badly on Monday so we've been pretty vigilant about keeping on
top of his care...So, let's see. Every time I've spoken with Amy at the hospital,
she's been pretty upbeat. She and Brian actually got to go out to eat (IHOP~~ha ha)
and even took an excursion to New York City. I know that they were disappointed that
they were delayed going home a day (because the medical flight had to cancel) as Amy was
looking forward to sleeping in her own bed. But, she said, they could deal with
another night at the hospital if that's what had to happen. Lily has been happy and
smiling and doing really well. Her secretions have been awfully dry, due to the arid
hospital atmosphere, and some of her medications, so it will be good to get her back to
her own home!
FYI: I haven't spoken to Amy yet but I just saw that the weather in the Kentucky/Tennessee area is supposed to be really bad--tornadoes, and storms. So, will they get to come home today???
May 1 YEAH AND THANK YOU SUE for all the wonderful updating you have done on the website! We did make it home before all the storms (good thing huh) and we are snug and safe and sound right now. Lily is in her bed (well, my bed..) and I am getting ready to head back and hit the bed right now too. I wanted to thank all of you for your prayers during this time and of course Lily has proven just how strong she is of course. She did great and she always amazes us with her strenth in the most trying of circumstances. She has bounced back really quick but I have to fight the urge to think she is completely up to par. As great as Lily has done she is still recovering from major surgery and so she still needs her rest and extra bipap. She was great and today and did awsome on the plane ride and Ambulance rides to and from the planes. She didn't seem to excited to be home but mommy sure was! It will be nice to crawl into bed tonight and be able to stretch out and get some rest. I will add more tomorrow but I wanted everyone to know we are home safe and sound and thanks to Sue again for keeping everyone updated on what was going on!!! Hugs to all.
May 3 Hello all! Sorry I have not updated since coming home but as you can imadgine we are all worn out and only wanted to sleep and play with Lily. Things here are pretty good, Lily did have an episode yesterday evening (sorry Debbie for scaring you) but I got her back up and she is doing fine. She just needs a chance to recoup and get her strength back up which I know will require some work. She has been through so much in her short life! These episodes take so much out of her each time so we will be working with her slowly to get her back up. She is maintaining great stats and her heartrate is even lower than it was before. She is doing amazingly well for just having major surgery! She is such a little fighter and I do wish we would have pinpointed this sooner and gotten her in to do this alot sooner because I cannot imadgine how much pain she has been in with the severe reflux. She is a trooper! It has been very nice to sleep in our own beds and to snuggle up to her at night. Our hospital stay was ok but of course there is nothing like home. Kosairs in Louisville was nice, then our trip to NJ where they just know how to deal with SMA was great. The annoying thing of course is the nurses coming in and out when you are trying to sleep but that is their job and of course the did a great job too. Lets see..we were admitted to Kosair on Monday April 22 after spending the weekend in the ER but being released again and again. On Monday Morning I knew we needed to get her to NJ because something was wrong, she kept vomiting and destating so very badly and was having to work so hard at keeping her oxygen level up to even 95-96% (her normal is 99-100%). We got to the hospital and then things stalled, they just didn't really see anything wrong with her. Finally I talked to Dr. Bach myself and to Dr. Bethyl and they both agreed that we needed the Nissen surgery because she had severe reflux. We got Kosair to run a reflux test on Lily which showed mild to moderate reflux (of course when then put the food into her stomach it came out of her nose within a matter of 30 seconds but that was not documented) so they didn't really see a reason to fly her to NJ for the surgery and were talking about releasing us or putting us on another floor! The following morning I was awakened by my Mom standing over me (it was the first night I had slept in a bed) telling me Lily was destating and I needed to get to her. When I went in I saw some nurses standing over her suction her out as if it was nothing major, I looked on the cloth I keep under her head for her secretions and saw she had refluxed formula up and looked at her face and knew she was going to destat so pushed them out of the way and grabbed the inex with oxygen attached and yelled at the nurse to get a doctor (which had not come in yet)..she of course crashed very low (but not as low as usual) and when I got her back up and on bipap the doctor came in and wanted to listen to her chest..she vomited again so I did the routine again with the doctor watching...then she kept doing it a few more times and by that time the doctor saw what we were dealing with and ran out and discussed about getting us to NJ for the surgery that day. Things moved quickly then and we were on a plane on our way to NJ. She did ok on the flight with only 1 destat in the beginning because they couldn't get the suction to work. She went on bipap after that and was like that the rest of the way there. We got to NJ and had lots of paperwork, nurses in and out, etc...then the next morning her surgery was schedueled for 6:30am so they came for us at 6am. Things went good and they took her back. When Lily came out of surgery it really shook me up to see her on the ventilator but they knew what they were doing and within an hour and a half she was off of it! My big strong girl fought it the whole time! She went on bipap and slept off and on all day long. When her medicine began wearing off they gave her tylenol but she needed something stronger so they got her some with Codine in it. We slept fitfully that night but by the next afternoon she began to feel better and each day from there she improved. She did great! Brian and I got to get out for a short while and go to New York City (wow is all I can say) and really we had a great rest of the stay. We got to meet another family in the hospital with a son a little older than Lily (he just turned 1) with SMA as well. Timmy is a doll! Of course you know the rest, we flew home on Wednesday and Lily is recovering great. Other than her one episode she is smiling, laughing, and doing wonderfully. I know it will take some time for her to get her strength back up but I know she will do it! I am so very proud of my little girl and the awsome job she is doing, she has such an inner strength and I thank God for that. Without that I could not fight for her the way I do...but she is the true fighter of this family. Thank you all so much for all your prayers and thoughts...thanks to Kim McAdams for the balloons and Debbie Brock for the Bear, Card, and Balloon. It means so much to have everyone checking in on us and keeping up with us. We love all of you and now I hope to report everyday boring stuff! God Bless...oh yea, I would like to express my sorrow over losing another one of our sweet SMA angels. Her name is Adrianne Gayman and if you would include her family in your prayers. She was a little over 2 years old and she passed away peacefully. Her family did a great job with her and I am sure has a hole in their lives. It is so sad when we lose a member of our SMA family so please keep Kelly and Matt (Adrianne's parents) in your thoughts and prayers. Hugs and kisses to all!
May 4 Well I love saying this...another great day. It is so nice to have a normal day. I am still exhausted and trying to get caught up on some sleep...I know that before the hospital stay I didn't really get a full night of sleep but at least it was in my own bed and in my own house. Now about today..Lily was great, she is so spoiled and is showing her "meaness". She is awful and I have to laugh and I really shouldn't. Daddy brought me breakfast this morning (he has a cold and is staying at his dad's house..he wore a mask over his face and didn't stay) he came back into the bedroom to just see Lily and she refused to look at him and continued to watch her movie so I turned it off and made her look at Daddy and wave bye bye to him..she threw a fit! Then later on I was trying to talk to her and she wouldn't look at me so I turned the movie off and she started crying and even held her breath!! She didn't crash but wasn't happy until I put the movie back on. It is so nice to see her getting back to normal and really she isn't bad at all...those were just a few isolated things and I will be working on them in the future, I told her she had until Monday and things were going to start getting back to normal again. We did get to spend sometime outside today, it is hard since she is connected to her feeding pump all day but starting tomorrow I am going to begin to up her feeds again and let her off the pump for 4 hours now and slowly begin working her to bolus feeds again. She is doing great and I will say it again..she is amazing!!!! Hugs to all!
May 5 Gosh I feel like I just cannot catch up on sleep! Sorry I just thought I would share that....another day with nothing to report except that she had a beautiful smiley day again. She is just precious and when she smiles she can just melt your heart. She did better today about the Movies and would look at me more when I talked to her so that is good. She had a great day and we got to only go outside for a short bit but hopefully we can make it out more this week since it is supposed to be warm. We did have a visit from her Great Uncle Steve who said she looked great (I agree) and she smiled, made faces for him and of course wanted him to sit down and watch her movies with her. She threw Elmo off the couch for us and showed him her jewlery (I have pictures to put up on the site with her braclet and rings in it...she loves them). Tomorrow we will start back with some sort of "normal" hopefully in our lives. She has been going to sleep around midnight (ugggg...) and no matter how early I have her ready for bed she will just lay there with her eyes open for as long as she can. I usually fall asleep before she does...ha ha. Tomorrow her PT is coming back to stretch her and of course she will take it easy on her but I feel like we have to get back into the swing of things somehow. We will be working at getting her off the pump more too..and of course going to bed earlier! Well, speaking of bed I think I will head on back to bed again. Hugs to all!!!
May 8 Sorry it has been a few days since updating the journal....nothing much has been happening really which is a blessing. No more episodes and Lily is doing wonderfully! It is so great to see her feeling so good but it is sad to think of how long she had to be putting up with the reflux and of course I wish we would have gotten it taken care of a long time ago. We didn't so we just have to be thankful that we got it taken care of and be happy with how great she is doing. Really you would never know she had surgery just a week and 6 days ago. She is so smiley and happy...and is talking up a storm! She of course is rotten and tonight is the earliest she has gone to bed since coming home. I am really bad about making her go to bed and I really should be better about making her go but I just don't have the heart to make her go when she isn't ready. I am going to get better about it though...she actually went at 10 tonight instead of the Midnight times she has been keeping since coming home from the hospital. We have been upping her feeds and she is doing great with handling them, I had been worried about her residuals (how she is digesting..and what is left in her stomach) but now she is doing great with it and is digesting everything very quickly. I am going to up the amount again tomorrow so that I can get more water into her. We got a new feeding pump called an Eneralite which can fit into this little backpack so that we can go outside in her wagon or in the van or whatever and she can continue to get her feedings while enjoying being out and about with NO IV POLE attached. It is nice and worth the fight I had to undergo to get it. Ok...I think I have said everything that has been going on..she was a grouch today because she didn't get enough sleep. A little nap didn't help and so tonight when I tried to take her outside she cried and cried and just wanted to come in and watch her movies. She is funny and didn't want to give up tonight when I put her to sleep...she fights it so hard. Well, I better get to bed...thanks for all the prayers you all sent up for us and we are very hopeful that all the problems are now behind us and we can get on and enjoy our summer. We continue to battle on and fight SMA...we will not let it win! Continue to pray for all our little ones affected by this disease. I know God has angels all around little Lily and is protecting her for a reason...she will have a tremendous testamony when she grows up and of course I know in my heart of hearts that she is going to do ALL the things she is supposed to do which includes walking, running, jumping, etc. I do not think I am being to wishful because when God does something he does not do it halfway...he does it all the way. A miracle is a miracle! Gosh I can get myself so worked up over that....it is exciting to think about. God has given me the ability to take care of a sweet little girl, he has given me all the necessary things I need to keep her healthy, happy, and whole. He has given me friends that I can call any hour of the day and night for advice, help, and a shoulder to cry on. I have been given a gift with the name Lily. He has a hand on her life and he has given me a job to do....it is a very enjoyable job, sometimes a hard job, but a wonderful job. Through all of it I realize what it is to be a mother. I have learned so much from Lily and Nathan about what life is really about. Ok, I know I have rambled on and on so I better get to bed....thanks for bearing with me and the rambling..sometimes I just get so excited and I want everyone to know I have the best 2 children in the world (1 in heaven and one on this earth). God Bless!!!
May 9 This one could be long to....ha ha. I will try and keep this short since it is late and I need to get to bed. Tonight I was able to talk to a mom in Kentucky who's son was diagnosed with SMA type 1 at 3 months of age. He is now 5 months old and she called a friend of mine in Owensboro (Ethan's mom Angie..Ethan is a type 1 as well and was the first person I talked to after Lily was diagnosed). Anyway she called Angie I would imadgine out of desperation because she took her precious son to the hospital and they told her to take him home. Not only to take him home but with the collapsed lung he was taken there for and was told there was nothing they could do for him. Ok, not only that but instead of taking her home in an ambulance as she requested they told her to she would have to drive him home herself. Oh yes, they did send her home with a suction machine and oxygen. Talk about moron's! Sure they could have helped him out but they chose not to bother..why? Because he has SMA! I find it amazing that doctors and hospitals will do everything possible to help out other types of diseases no matter what but then bring someone in with SMA and tell them they have to go home and die? How can doctors do that? I thought they had to uphold life? How dare they tell me to take my child home to die then preach to me about the quality of life? That poor little boy had to go home trying to breath with a collapsed lung, continue to try and eat and all the while just supposed to die? What kind of death would that be? Uggg....I wish I could get all these measly hospitals with their smug doctors together in one place so I can tell them what a bunch of idiots they are. There are so few doctors in this country who are willing to help out our SMA babies. Why is that? I would love to know the reasoning. Even when these same doctors run across people who are doing what we are doing for their children they still will not admit it is working. There are kids now with SMA type 1 living well past their "diagnosis" and doing well. They are THRIVING! I cannot imadgine what I would have done if I had never met the families I had met when Lily was diagnosed. I cannot imadgine life without Lily at all. Her quality of life? I would say she has a pretty good quality of life. Sure she cannot walk, crawl, etc. but how can a doctor judge her quality of life without coming and seeing what it is like to LIVE with this day in and day out? To see my sweet girl smile, and laugh. To see how very smart she is as she watches her video's and to see the pure joy when I have her upon my shoulder walking around the house or outside in the yard. Anyway....Angie called me after she spoke to this mom and gave me her phone number and I called her and talked to her as well. I told her all the things we do for Lily and all about Lily's life. I told her about Nathan and what we didn't know with him. I gave her the options and Angie and I helped her with trying to get his lung fixed. She is going to take him to Angie's doctor in Evansville Indiana tomorrow morning. Angie's doctor is wonderful and does Dr. Bach's protocal so she will be in good hands. Her son Stephen will get great care and once they get his lung inflated again she can make all the decisions she needs to with him. We will help her every step of the way and I will do all I can to help her because I was where she was not to long ago. I would love to educate hospitals, doctors, the specialists, and anyone who wants to listen about SMA. I would love to tell my story and let them see how Lily is doing as she nears her 1 year mark (a mark that most SMA type 1 children do not make it to...80% die by their first birthday). What a milestone it is..and what a joy it will be to see her grow up and live her life. Our life isn't perfect but I am thankful for my precious daughter and son and what they both have taught me. I will continue to battle SMA and know that there will be a cure, Lily's miracle will happen. There will be a cure for SMA in Lily's lifetime and yes she will benefit from it. How do I know? Because I have a BIG God who does everything right and perfect. God Bless and please lift Stephen and his mom Cherie in prayer as they begin their journey with SMA. I thank God he has given me the ability to help others going through this...and I will continue to help anyone who needs it. Goodnight! Oh yes, Lily had another great day!!! Goodnight!
May 12 HAPPY MOTHERS DAY to all you mom's out there. Thanks to all of you who sent me Mother's Day wishes as well and thank you for all th kind things you all had to say. There are lots of other Mommy's out there that would be doing the same things as me but of course it is nice to get that pat on the back every once in a while. It was a WONDERFUL day with one exception...and that is missing my sweet Natie Bug. I know he is sending me his own special mother's day wish from heaven....but it will be a joyful mother's day when I can once again hold him in my arms! What a sweetie is was and of course still is. Other than missing him my day was perfect. Lily was very good all day long and she even spent some quality time AWAY from her movies with me. Brian went and got me a very nice dinner from Outback (my favorite place to eat) since I can't go out to eat and it was very good Yummy! Lily and I went outside this evening and talked and talked. I held her on my shoulder (her favorite place to be) and we sat in a chair and I told her all about her big brother Nathan and what he was like and what he liked to do. I told her how much I love him and miss him and of course I told her he is in heaven smiling down on us at that very moment. We sat under the trees and sang songs, watched the leaves blow in the breeze, and just chilled out. It was wonderful. Earlier Noni came out to see us and then my Uncle Danny came and saw Lily and he brought Granny. It was nice to see them and Uncle Danny hasn't gotten to see Lily in a while. They didn't stay for long because they were going out to eat for Mother's Day. Now Yesterday I was to exhausted to write what we did but we had a great day yesterday too! Lily slept in until 11:30!!!!! She got up and we messed around here for a while then packed the van up and went over to Noni and Pappy's house for the afternoon. Travis and his girlfriend Dena was there and we all just sat and talked. Lily was excellent! She had a really good time and got to sit outside on a lawnchair looking at everything around her. It was nice! One of the nicest things was Lily's new feeding pump! Before we always had to plan her time out around her feedings but this time we left while she was being fed. We got a new mini pump that fits into a backpack so she is transportable with it. It was great and she didn't have to miss a feeding and she still got to enjoy the outdoors with it. It will make this summer alot nicer. Anyway after visiting with Noni for a while we had to drop her off at the Shelby County Country Club where they were doing a fund raising weekend for the charity. The Charity that did the fund raiser is the Charity that does so many wonderful things for Lily...so they were raising lots of money. When I dropped Noni off some of the board members got to see her...put a face with the name. They are all so very nice. It was wonderful and we are so thankful to the Shelbyville Charity for helping us out. The most recent thing they are doing for Lily is buying her Tiger 2000 wheelchair/stroller. The cost is 3700 and the insurance denied us. They are stepping in so Lily can have it...isn't that wonderful. God has blessed us with many wonderful people along our journey. We are thankful. Well, I think I have rambled on long enough...I am sorry to all the people who read this journal on a daily basis....sometimes I bet you think...why won't she just SHUT UP!!!! God Bless!!!!!
May 16 Sorry it has been a few days updating this....it seems like I am sooooo busy right now. We had a couple of rooms painted yesterday and Lily has been a handful (she won't take naps and is quite a handful....but of ckurse I love it). Tuesday we went out for the day and ended up at the mall and had such a wonderful time!! Lily loved it and her eyes never stopped moving, she smiled the whole day and did awsome! Her stats never once dropped and she didn't ever need to be suctioned but I did do it twice in a quiet spot. We had a wonderful day and even got to meet a "celebrity" and told them about her. We got to meet Bob Baffert (winner of this year's Kentucky Derby) and we got him to sign a KY. Derby print for us to raffle off at Lily's fundraiser this fall. Anyways we got home later in the evening and I was just exhausted..then yesterday was just busy too so here I am updating. Ok..today Lily went to her doctor to have the bandages removed from her surgery...it looks great! Anyway our doctor told me some pretty upsetting things about the hospital we were at (Kosair) and how they really didn't want to treat us because in their words "Lily is just going to die anyway".....pretty upsetting huh? This is the treatment us parents get ALL THE TIME from hospitals across the country. Anyway it is because of Dr. Canby that we got her in and to New Jersey...Kosair didn't want to fool with us at all. I thought Kosair was pretty good but in reality they wanted us to take Lily home, and let her DIE. I am not even going to get into all the things that they said to Lily's Dr. but the gist of it is that the felt that Lily's "quality of life" is not worth treating her and that we were "prolonging the inevitable" and that "she is going to die anyway". Dr. Canby talked to the Dr. over Lily and told her that I didn't have an MD behind my name but that I knew more than any doctor in there on how to treat Lily!!! Way to go Dr. Canby!!! Also she told them it was none of their buisness what I did with Lily...it was OUR choice not theirs and to respect our wishes. Needless to say thanks to God and Dr. Canby Lily got what she needed but I did call Kosair and will proceed to tell EVERYONE I know what they said and all that jazz. I find it amazing that Dr.'s who have NO RIGHT to tell me what my daughter's quality of life is feel it is their purpose in life to PLAY GOD. How do they know what our life is like at home? Think of how many other little SMA babies have probably gone to Kosair (or UK Medical Center) to have their children treated and they have not given them any options and they took those kids home to DIE. I find it upsetting and very angering. Well, I need to get off of here because I am actually livid about it.....God will judge them and I pray very harshly.
May 20 I want to let you all know we are having some problems with our computer and so if I do not update for a few weeks (or most likely Sue can do some updating for me) that is why. We are going to send it in for a checkup and to get it updated. I am not sure when but if I am not updating her journal for a while that is why. Ok now onto things...Lily is going through something, my poor girl just can't seem to catch a break! We think it is a mix of allergies and teething! The other night (Saturday night) her heartrate got higher then normal and during her sleeping that night you could tell she was in quite a bit of pain and had a really high heartrate then too. She got up on Sunday not feeling good at all and was grouchy for most of the day. We did alot of coughing, suctioning, etc. By evening she felt some better but until I gave her a dose of Motrin (we had been giving her tylenol) things then got alot better. She got up kinda the same way again today (grouchy, watery eyes, lots of secretions, etc.) but is not napping and sleeping pretty good. Last night she slept really well too (thank goodness). Other than that things are going good...she is really starting to move her head alot more now and pulling her arms away from you. I think she is starting to gain her strength back now that she isn't battling so much with reflux and destating. We still have to keep on top of her with the suctioning but I think that is normal for her. Well, I actually need to get back to her now so....I will update more later. Hugs to all!!!
Lily's Favorite things
Watching her videos of course..her favorites are pretty much the same as last month with maybe one more added..
Anything with Elmo
Rolie Polie Olie
Other interests are...
Pretty much the same as last month too...the best ones are
Being up on Mommy's shoulder
Being outside in her wagon
Making lots of faces (mean faces, pretty faces, and Kentucky faces...LOL)
Reading her books
Lily's dislikes are....
Pretty much the same as last month too...
Doing her stretches
Mommy turning her video off to talk to her
The cough machine
Getting her face washed
Sleeping in her crib
Taking a Bath
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