|February 1 Mommy
got to go out today and have some mommy time. I stayed home with daddy and noni and
got to play with them. Mommy seemed to have a good time and told me how much she
missed me. She must of because with all her shopping she got me the most stuff!!
I got 3 new video's to watch and of course watched them tonight. Them mommy
held me for a long time and I fell asleep. I had a pretty good day!!
Ahhhhhh...sometimes it is nice to just get out and do something besides be a mommy.
I got to go out for lunch, go shopping, and just drive around and it was
wonderful!!! Of course I missed my baby girl but I came back more refreshed and
ready to tackle anything!! I was only away for 3 1/2 hours but it was nice and I
hope to do it again soon. I think every mom...SMA or not needs some time away from
it all...but most expecially the SMA moms because of how much they have to do. I
didn't have to look at the pulse ox, or suction, or do bipap, or stretch...or think of
something for her to play with. She had a good day and I think she was pretty good
when I was gone. She wouldn't take a good nap though and so it made her a little
grumpy tonight. She fell asleep tonight on my shoulder so I took her back to put her
to sleep and she didn't want any of it. No BiPap..no nothing. It took me
forever to get her to go to sleep!! Finally she fell asleep but it isn't looking
like a good night for her..she seems restless again. Well, we will see. I am
alone tonight for the first time in a long time and it is nice to have the house to
myself. In fact I think I will get off the computer and read a book or something
like that. God Bless!!!!!
February 2 Well...another episode today!! I freaked out and didn't do so well but we did get her back up without having to take her to the hospital! She was laying in her bean bag chair doing just fine..I had her monitor on her because I was going to get dressed and I went in to get my clothes and I heard her alarm going off..I flew into the front room and looked at her and her lips were blue..I tried to suction her but nothing was working so I grabbed her up, grabbed the suction, grabbed her stat monitor and flew to the inex machine and started coughing her crying the whole time..she at one time was down to 24%! I didnt' think she could get floppier but she did and she wasn't crying or anything...I coughed her a few times then put her on bipap and hooked the O2 up to it..it seemed like forever with her coming up but I suctioned out her mouth and didn't realize it but got a mucus plug out of her so big it clogged up the tubing for the suction so it wouldn't work anymore. By the time the ambulance got there she was back up to the 90's and crying right along with me!! It was scary but we made it through again....thank God for Brian being there because I was totally not calm...when I looked at her and she was limp and grey with the blue lips I was reminded of my son Nathan...and I just freaked!! Thank God she came out of it and is fine now..she came off the bipap smiling at us and her lungs sounded clear and she was looking fine. The EMT's were very nice and told us we did great and that she looked fine. It took me a while to calm down and quit crying but we are now fine...and I know there will be more episodes too..that is just a givin with this disease and I will pray that I handle them all better than this one! She took a nap this afternoon and has been fine ever since. I know all the parents of SMA babies have gone through this and can relate so I feel a comfort with that...if they can do it I can too!! Lily is one tough cookie and will fight and fight for her life!! On another note after having 2 children with SMA I have to say that you learn to appriciate life so much more...when I was out yesterday I went out to eat and had to listen to other people talk about their lives and all people did was complain about something!! I have never really thought about it much but most people live to complain about something...I wanted to turn to everyone and tell them what we are going through and what my daughter has to face on a day to day basis and tell them they have NOTHING to complain about but I know that unless you go through something like this you dont' really learn to appricate all the things in your life. I truely do appricate the thing..expecially the small things in my life!! Hugs and kisses to you all!!
February 3 A lazy day today..we didn't do much and spent the day just lazing around. She of course watched her video's and then we sacked out on the floor and played with her toys and watched the Super Bowl....no episodes (she did dip down but more from crying than anything else). She spent a great deal on my shoulder (which is now her favorite place..she would stay up there all day..I have a picture of her on my shoulder in the picture section) loving it!! We rode around for a while in the Kid Kart zipping from room to room. Tomorrow is a big day for her...the PT is here, plus she gets her RSV shot too (yuck)..so that means a grumpy girl for a couple of days. Dare I say it...mommy said I get my shot tomorrow...NO!! And my PT..what am I going to do? Check out all my new pictures on here....mommy sent Laura a bunch of them!!
February 4 Ugggg...I had to get my RSV shot today and Nurse Deanna had to give it to me now in two shots!! I cried and cried....she had to sit on the other side of the room afterward and not get close to me. Today is also my boyfriends 10 month birthday so HAPPY 10 MONTH BIRTHDAY COLIN!!! (you can visit Colin's website at www.our-sma-angels.com/Colin Well, I am very tired tonight from all my stuff today so I am going to bed!! She had a pretty good day but we certainly will be thankful when spring comes and we can get outside and look at something beside this house!!! Poor girl with her 2 shots...I felt to bad but now she only has 2 more months to go for now. She is a good girl that is for sure. She was whiny today but I would be too...plus she really worked hard (and very good) for Miss Beth the PT today. She was doing all kinds of good things!! Well, I am off to bed!!
February 5 Had a great day today!! The day started off bad, I woke up in a bad mood..then got depressed and did some crying and feeling sorry for myself, my family, and of course Lily. I couldn't quit thinking about what Lily should be doing, and how horrible this disease is and how it hurt all of us but most importantly Lily. I hated the fact that I don't even know how to play with my own daughter and that all she seems to be interested in is the TV and watching movies. While all this was going on I looked over at Lily who of course was watching TV...she had her little Elmo in her hand. Well she gave me her sideways look and dropped Elmo off the couch, her game of getting me to pick up Elmo (she drops everything off the couch for me to get...she is funny). Anyway I looked at her, got on my rear by her and played my heart out with her. We played Peek-a-boo with her little Elmo, and with her Tickle me Elmo. We got out some of the toys in her toybox and played with them. Some of the things she wasn't interested in still but the point is that we PLAYED and she had fun. I even diverted her attention from the TV for a while which was wonderful. Since I had success this morning playing with her I once again did it again when she got up from her nap and once again she had a fun time playing with Mommy....it was great and just the though that I made her smile and knowing she was having a good time with me was wonderful and just made my whole day. She is amazing and I love her more and more...I still hate this disease but days like today make it more bearable...and we will hold on for however long we have to for the cure that is coming. It doesn't matter what she can't do...what matters is that I make her life better and encourage her to do all she can do. She is a wonderful, happy, and very easygoing little girl who means more than life itself to me. She isn't like normal children but she is special and unique! I want the world to know how wonderful she is and how thankful I am to have her in my life. God Bless!!!!
February 6 Had a pretty good day, nothing much happened (which is a pretty good day). Her stats are kinda low on bipap tonight and not sure why...probably shouldn't worry to much but of course I am a mommy so I do. I debated whether or not to take the bipap off and cough her (she of course was in a sound sleep) and after watching the numbers drop to 96% I decided I couldn't deal with it so I turned the light on and prepared to cough her. When I took her bipap off her stats went right on up to 100%....hummmm..not sure what is going on there. I listened to her lungs which sound clear and then just looked at her and listened to her breath and decided NOT to cough her (she sleeps like a brick and she hadn't woke up with all that..but the cough machine would wake her I am sure). I put her back on bipap and her stats are jumping around again but she is sleeping peacefully so I am going to not worry about it tonight unless they drop below 95%. Maybe just a fluke tonight who knows. We did get some play time in today and it was nice. She got to ride around in the kid kart for a while too and she loved it!! We just rolled from room to room then would stop and play for a minute then on again..she enjoyed it very much. Well, need to get to bed!!
February 7 Had a really good day today. Mommy held me alot and I got to ride around the house alot in the kid kart which was fun. Mommy took a nap with me and when we got up she promply put me on her shoulder and we danced and danced to a CD. It was funny. I had alot of air in my belly last night which made me really uncomfortable last night and so mommy had to get up alot with me again..I try to be good but sometimes I get so much air in my belly it just hurts. When I took my nap today I didn't get much air in my belly so maybe it is better now. Well..goodnight. She had a ton of air in her belly so maybe it was what was messing with her stats but really I had alot of responses to my question reguarding that and most people told me not to worry about it so if it happens again I don't think I will worry as much as long as she seems ok about it. We did dance around to Daddy's CD tonight and she seemed to have a good day today. I got her in her kid kart for a long time and she handled it just fine and all I had to do is suction her a few times in it too. I do think my baby gets prettier and prettier each and every day!! I didn't get to depressed today either so that is good too. Tomorrow her speach therepist is coming so...better get in bed and prepare for another full day!! God Bless!!
February 8 Pretty good day again today..Miss Mary Beth came over,she is my Speech Therepist, and did a few things with me. She brough me a couple of things to try that make my toys work. I wasn't really sure about it though and ended up crying. Daddy came home too and played with me and we had fun. I got to watch all my favorite cartoons but mommy coughed me 2 TIMES this morning and I didn't like it at all but she said it was important to do it. I did get some good quality time with mommy too and we had a pretty good time today. Better go. Lily had a rough morning, we got up did our coughing then went in to watch cartoons. I went to feed her and she started choking at the same time so I had to suction her and she ended up throwing up too!! It just gushed out of her mouth and nose (I think it was because I touched her gag reflex) so I ran her back and coughed her again to make sure none went to her lungs. Poor things she hates the cough machine anyway and had to have it 2 times in the morning!! After that she seemed to have a great day!! She took a great nap too. Well, it's late and I better get to bed.
February 9 Yea yea yea...Lily had a great day!! Tonight was the best though...she was bored with movies so I put her in the kid kart and she rode around the house forever!! She talked on the phone to everyone, and just had a great time!! She loves to ride around the house and so I just kept pushing her and pushing her. When it came time to eat I took her out and she just fussed and fussed until I fed her and put her back into it again. We must have made 500 laps around our little house!! She just smiled and talked..we sang and had big conversations too. She is so funny...then she started getting tired and off to bed we rolled. She knows that when I ask her, "do you want to get in your chariot?"...she gets all excited because she knows she is going to ride around. It was almost warm enough today to get her outside but with Brian gone I was to nervous to get her outside by myself in case something was to go wrong (I don't know what but who knows!!). So we just played around in the house today..with Brian here tomorrow maybe I will try to get her outside if it is warm enough again. I have started to give her more volume in her feedings too..I am increasing her fluid intake since it keeps her secretions thinner and all. She is doing great!! I am proud of her and she just looks fantastic. The peditritian is coming on Tuesday to give her shots and to check her out and I am excited to have the see how great she looks considering!! She is gaining weight, still moving, and smiling all the time. I hope I can have the house clean by then though.....Ha ha!! Well, better get to bed and as always thank you for reading our journal and keeping up with us. God Bless!!!
February 11 Big day today..we had her IFSP meeting this afternoon with all her PT's to discuss our goals for the next 6 months and it took a while. Lily did very well too, she had her therepy before the meeting started with Miss Beth and Miss Mary and she did great (of course). She really likes Miss Mary her Speech girl and so she distracted Lily while Miss Beth "worked" her. Then she feel asleep for part of the meeting so when it was time for her real nap she didn't want it because of her nippy nap earlier. She ended up going to bed around 4:30 and waking at around 7:30..not the most restful sleep either but she slept anyway. We played around tonight with some of her toys then settled in with an Elmo movie and "danced" around. She likes the Elmocise movie and I make sure she exercises right along with Elmo and the crew and she loves it! She is doing great getting bigger and bigger. Tomorrow her Peditriatian is coming out to check her out and give her shots (she is behind..she will be getting her 6 month shots) so should be fun fun fun!!!! I will probably get to show her all of Lily's equiptment then too so she can see what all we do with her. Well, I better get to bed...Lily sends her hugs and kisses to everyone!!!
February 12 Yuck, Yuck, and more Yucky!! My doctor came out today and gave me 2 shots...mom put me on BiPaP so I wouldn't destat or anything and I hated it because I thought maybe she was trying to get me to take a nap. Anyway, they hurt and made me grumpy all day. Mommy seemed to be sorta in a bad mood herself tonight so I tried to be good until bed time and really was pretty good, just watched my movies. When I got up from my nap my DADDY rode me around in the kid kart for a while until I got sorta choked up then he said it was time to get out but I did have fun going around the house with him. Bye for now!! Dr. Canby came out and gave Lily her shots so we are caught up now (except she didn't have the prevnar shot..said there was a shortage of it right now) but she said she would have to give her another shot next month (9 months) I think she said the HIB shot or something. I am not sure right now anyway. Lily did well, I did put her on her BiPaP but mainly to show Dr. Canby how it works and so I kept it on her so she wouldn't destat so badly but she hated it and I ended up taking her off quickly and just suctioning her out. I showed Dr. Canby the INEX too..she was impressed with it. We weighted her, measured her (to the best of our abilities with a tape measure), and all that stuff. She looks good and Dr. Canby said she looks good. She of course fell into a lower percentage for her weight but that is due to her lack of muscle..she looks terrific. She weighs 15.10 now and is 26 1/2 inches long. Her ears looked good, lungs sounded good, and all that jazz. She did great for her shots and I have been giving her tylenol every four hours for the shots...she took a great nap..and I took one with her too (didnt' mean to because I have so much stuff to do but oh well...I slept), we slept for 3 hours!! She kept waking up and checking to see if I was there, she would fuss a little and I would snuggle her closer and she would fall back to sleep again (it is really sweet to snuggle with her). When we woke up I cooked dinner and Brian strolled her around the house and played with her. She settled down and watched her movies before her bath and bed. I did have to silver nitrate her g-tube again and will have to do it probably every other day for the growth around it. I had a sorta depressed day..I hate this disease so much!! I will be ok and get over it, I just have days like that where I just need to cry..and I DID!! I bucked up and have so much to be thankful for really, her health and sweetness!! She is amazing!! Well, better get to bed!!
February 13 A great day today, I was able to get out for a short bit and go to Walmart and so some shopping...it was fun!! Then I got to come home and be with the sweetest little girl ever!! She had a great day..but poor little thing her shots from yesterday made her little lets very sore and she has a big red bump from them as well. I feel so very bad so I took it easy on her with her exercises. She got 2 new movies today and got to watch them then tonight she spent a long time in the kid kart playing around. She just loves that thing!! She loves going from room to room in it so I try and do it with her as much as I can. It gets her out and about too anyway..mobility is what she enjoys!! We played for a long time with her toys as well too....we had a good time. Once again let me stress how remarkable my daughter is and how strong she is too. She is moving her arms like a pro and even moving her legs some too!! She just amazes me with the things she can do....I love her so much!!
February 14 Mommy is so proud of me..tonight I layed on my belly for an hour!! I haven't layed on my belly since I was a tiny baby. Mommy said she is going to make me do it more often and guess what? I liked it too..it felf pretty good and I got to watch my video's like that too. I had a good day, I got to play with Noni this morning and then got to play with Mommy this afternoon. I took my nap and then pappy came out too and got to see me. I had a fun filled day!! Yea yea yea Lily layed on her belly!! I have been putting it off and tonight I just thought I am going to do it and so I got her place ready on the floor with her TV and all and put her down there. First I tried her on her boppy pillow but she looked so uncomfortable like that so I just moved it and put her flat on the floor and she really liked it! She was able to turn her head to the side and drool out and watch her movies in a different postion (I am sure she gets tired of the same old postitions she is in through the day). I rubbed her back and legs and she even lifted her legs from the knee down pretty high off the floor! It is a great way to stretch out her hip flexors and straighten her knees so she will have that done at least hopefully 3 times a day and if she does as well as she did tonight it will not be any problem. She got to ride around in the kid kart too which she loves and I got out all her toys and played with them with her this afternoon. I got her to take an earlier nap so she could go to bed earlier too which was nice. I am working on getting her to bed alot earlier so that I can have some time at night to watch things that I want to watch instead of the baby movies!! All in all we had a great day...of course everyday with Lily is a great day!!!
February 16 Mommy and I had a really good day today again! We didn't get to write in my journal yesterday but nothing big happened...we had a great day yesterday too. We had 2 visitors today, Mr. Walls and Ms. Dixon came out to see me. They are the wonderful people from the Shelbyville Charities. They talked about how pretty I am (which I already know) and how big I am getting. Mommy seemed to like talking to them but I just wanted to watch my Oswald show. Then Mommy put me to bed earlier again today, she even took a nap with me too and it was nice to snuggle again with mommy. Then tonight we did some fun things on the floor, sorta like exercises but much more fun then when Miss Beth does them! Well, I better get to bed. Tonight I decided to try Lily on an angled wedge that I have..we haven't been trying her at to many angles because I am always worried that she will not be able to handle it but since she does handle the kid kart so well I thought I would give it a shot. She did awsome!! She sat up (it is probably a 45 degree angle or maybe more) on it for over an hour and I only took her off because it was her bath time. She only had to be suctioned 2 times and that would have been flat or not so it didn't mean anything. She loved it too..she was up higher to see things. Another thing I have noticed is the increase in her arm movements the last few days..she has been playing alot with her hands and raising the upper part of her arms again. She has been playing with her ear, hair, and anything she can reach with her left arm. She can lift them both up and grab her hands above her chest and that is something that she hasn't always done. A bad thing that I noticed tonight is that the skin under her g-tube is bruised from her laying on her belly so much (I have been doing it everyday now)...I need to make sure that when I lay her on her belly I put padding under her g-tube...it doesn't seem to hurt her but it still looks yucky and for that reason I didn't put her on her belly today. Well, I guess that is really it...better get to bed.
February 17 I had an ok day today...we had lots of stuff going on around here and sometimes that makes me just a bit uptight but mommy has pretty much stuck by myside all day long playing with me. She even got out the wedge again and put me on it and I loved it again. I am up at a different angle watching my TV when I am up on it and it is nice. I, of course, have gotten to watch all my videos today but now I have more than I have time!! Pappy brought me out 2 more video's to add to my collection..The Best of Elmo and Elmo's world and he sat and watched them with me. Then mommy put me down for a nap and I had a little episode but I will let mommy tell you about that. I took my nap and now I am up again playing on my wedge. Well, better get back to my movies!! We had a small episode (if you can ever call them small). I was on the phone with a friend and was putting Lily to bed. She was fussing but her stats were fine and so I ran to get a diaper and then the alarm went off! I ran into the her room and she was in the 70's so by the time I grabbed the suction machine hose she was down to 46%...she was purple around her lips but she was still crying so I didn't think it was really as bad as it looked..so I suctioned her out really well and she went up into the 80's..then I inexed her and she was back to 99%...I had it under control. Other than that just a normal day of laying around..tomorrow is her work day!! Miss Beth will be here to work her out and I am excited to tell her about her being on the wedge..it is nice to have her up a little bit instead of flat on her back all the time. She is doing fantastic and of course is still amazing!! Better get back to her now....God Bless!! Debbie..we look forward to seeing you whenever you can come down!!!
February 18 Well, I have had a weird day...mommy isn't sure what to think about it. I started off grumpy but perked up a little bit when Miss Beth came to work me. I feel asleep on my belly about half way through our workout so she just let me be. Then when I got up noni sat with me and watched some movies then she left and went home. Then mommy came over and played with me some but I was just sorta grumpy so she put me on the floor on my wedge and read some books to me and let me watch some more TV. She had me moving my head all around and it felt good! Then she got me on the couch again and got me ready for my nap..we went back but I didn't really want to sleep and woke up after half an hour but mommy just layed there with me and made me sleepy again so I went back to sleep and slept for another hour and a half. When I got up I was in a great mood! I talked and talked and mommy carried me around on her shoulder and I helped her clean the living room. Then I got grumpy again and mommy couldn't figure out what was wrong with me either...I just didn't feel right. I took my bath and am going to bed now..hope I have a good night sleep!! She has acted funny all night but not bad enough to worry to much. Her stats to me have been lower than normal..she is running 97-98 alot which really isn't low but she usually runs 99-100 all the time. She will sometimes jump down to 96 but will not stay there. I am not sure why she is acting like this...she just isn't her normal self. I gave her some tylenol when I put her to bed and now she is sleeping great with great stats so hopefully after a good night of sleep she will be back to my normal happy girl.
February 19 ROUGH NIGHT LAST NIGHT!! I hoped she would get a good night of sleep..WRONG! Her heartrate never went down to normal and she woke up at 1:30 crying so I turned her and vented her g-tube..the air just rolled out. Then I couldn't get her to quit crying and it smelled a little like her formula so I thought maybe she had spit up or refluxed so I pulled the bipap mask off..DESTAT! Down she starts going so I grabbed the inex and started coughing her and brought her back up to the 90's then suctioned her out really good. She calmed down then and started to drift back off to sleep so back on goes the bipap this time taking her pressure down to 15 hoping it helps with the air...NOT. Her heartrate jumped all night so I knew she wasn't getting a good night sleep so I had to keep venting her g-tube sometimes every 15 minutes getting air out every time. Then at 6am she started crying again and so I jumped up and once again she had spit up or refluxed so I took the bipap mask off again and DESTAT again! We had to go through the whole inex thing again. I got her back up to the 90's again and then suctioned her out again and then called Brian to let him know what was going on. He came right home from work (he works 3rd shift) but by the time he came home her stats we ok and she was drifting back to sleep. I decided to keep her off bipap unless her stats dipped below 96 and of course they did so on the bipap goes again (around 7:30) and we went back to sleep snuggling close together. Her heartrate was still high (for her) but she slept with me until around 9:30. We got up and she just seemed fitful all morning but then we inexed her a few times and she came up, her stats cleared up staying at 99-100% and she acted better. Then nap time came and she went on bipap and her heartrate still remaining up more than normal. We had a CPR class at 5 so Brian went back to sit with her and make sure she was ok while we took the class (Brian had had infant CPR already) and Brian had to call me when she came off bipap he couldn't get her stats up, then one more time she sorta spit up and her stats dipped again. I of course inexed her (thank God for that machine) and got her settled and once the class was over we brought her into the living room and she seemed fine. We did give her some tylenol and gas drops so maybe it helped. She is now sleeping on bipap of course and her heartrate is back to normal (between 85-105 bpm) so hopefully she will remain fine all night and we can get some sleep!!! Hugs to all and thanks for checking in again!!
February 21 I will make this journal entry very quick...We are battling something with Lily but are not sure what is going on. She has had some bad coughing episodes and for those of you who are not familiar with our SMA kids cough let me explain to you that it is basically non exhistant. It is so weak and pitiful and doesn't do anything at all but upset our babies. It of course started off with the gas which she still has some of but now has moved into this horrible coughing phase. We dont' think it is a cold because there is no fever, no snot, no drainage, or anything like that. Her lungs sound clear and her stats once she is over her cough are fine. The episodes last anywhere from a half an hour to an hour and a half and when it is over she is so exhausted that she has to go on bipap just to recover. Tonight when she got up from her nap she was ok for half an hour then went on an hour and a half coughing fit and she was just exhausted when it was over with. She coughs on and off bipap..we of course are doing all we know to do and we will just have to let it takes its course with the hopes that it is over with very quickly. It is hard watching her go through it and knowing there is really nothing that I can do but hold her hand. Please keep her in your prayers that this bug whatever it is is over with quickly! This could zap her strength very quickly and that worrys me. I will continue to update her condition. Better get off to bed and I hope and pray she has a peaceful night (she has had coughing fits lasting up to an hour at night too...that is tough on all of us too). God Bless.
February 22 A much better day today! Very few episodes of coughing and the times she did cough it didn't last more then 5 minutes or so. We are hoping that this is the end of this (of course I am knocking on wood writing this). She had a good day, she woke up late and then took a little nap on bipap with me holding her. Since she didn't take a long nap at all this morning I decided to try to leave her on bipap and put her in her swing for a while to get her used to wearing her bipap in other situations and she did great; of course was there any doubt? She enjoyed swinging in her swing and was able to keep her head straight and watch her TV show at that time head on instead of from the side. I let her swing for a while then we got out and layed on our belly for a while and she loved that. She got good and stretched out and relaxed then it was time to eat and take another nap. I took her movies back with her TV and she got on bipap and watched 2 movies and fell asleep. She did have a short coughing episode during her nap but I left her on bipap and just kept rubbing her back and it only lasted around 5 minutes and she was back to sleep peacefully for another half hour. She got up and we played for a long time with her on the couch and me of the floor with all her toys..she had a ball and talked and talked. Then Noni came and played with her watching her movies and off to bed (at a normal time again) after CPT and cough machine. She did great today and just amazes me with her strength after all that she has been through this week. Hopefully tomorrow will be even better than today was!! Thanks to all of you for your prayers and thoughts!! Also Lily and I would like to wish our dear friend Kalair a Happy 2nd Birthday!!! The doctors diagnose our babies saying that they will die before their 2nd birthday most likely first one and she has outlived her doctors diagnosis. Her mommy Liz is a wonderful mother who has been my inspiration for Lily! I cannot express how happy we are to have Kalair reach this milestone and know that she will see many more birthdays as we wait for our miracle to come!! Let me say this too, Kalair is an amazing little girl who loves life and has such a beautiful smile! If my friends and family would like to visit her site it is at www.our-sma-angels.com/Kalair and leave her a message on her guestbook we would appriciate it. She is a cutie and we root for her everyday. Her mom has been a huge help to us with helping us to get things together for Lily and what we need to do and expecially her diet. She not only does this for me and Lily but for many other families who has a child with SMA type 1. They are wonderful people and we love them so please feel free to let them know it. Well, I will let everyone know how Lily is doing tomorrow!!! We love all of you all!!!
February 24 Well, another up and down day. When Lily isn't coughing she acts just fine, when she is coughing it is awful to watch and we just try and keep her comfortable and if it gets really bad we go ahead and cough her with the machine. Sometimes she is getting coughed up to 7 times a day!! She hates but I feel it is helping so we will keep doing. We had a good couple of days then it got bad again. She slept for most of the night last night but the night before that she was up at 3:00am coughing, then again at 6am then when she woke up AGAIN at 10am. She of course spit up during one of them so there is the extra worry of aspiration so we cough her and do CPT for that. It has just been very stressful and we are not sure when it will end. This morning she woke up at 6:45 coughing (after making it through the whole night) she ended up throwing up through her nose so we had to of course do the routine. She kept trying to fall back asleep but she would start coughing. Finally it died down and we got her settled back on Bipap and she slept until 10am. She had another short episode of coughing when she woke up at 10am but it wasn't to bad. She had a pretty good morning and afternoon until 2pm then she got to coughing again and it got really bad..she destated fairly low and we had to use the oxygen to get her back up along with coughing her but she got over it and was fine after that. She is now taking her nap but of course I am nervous about when she wakes up..will she cough again? It is just scary and hard when you don't know what is causing it..we thought maybe it was reflux but then she did it no where around eating time and I checked her stomach contents and she was empty so I don't think that is it. She hasn't had a problem before now with it anyway. The only thing we can think of is...I have had a sore throat with that lump that you just seem to be unable to swallow (you all know what I am talking about)...anyway maybe she has that throat problem with that tickle and lump and since she cannot swallow the coughing is the only reflex she has to try and get it to go away. We are just guessing at it but still dont' know. Please say extra prayers that this will be overwith SOON!!!! On another note...my husband Brian left to go to the grocery today and didn't even get a quarter of a mile up the road and WHAM a teenager slammed into him head on! He is fine (thank God) and had his seat belt on but our van is in bad shape. They don't think it is totaled but not sure about it. It was the other guys fault but I LOVE MY VAN!! Today has just been one of those days that maybe we should have all stayed in bed..as long as Lily wouldn't cough!!! Better go check on the baby. Love to all!! Me again (later on tonight)..Well, she had a pretty good night except she did cough before bed but no destats so that is good. She is sleeping soundly right now so I can hope that this goes on all night!! I can't wait to get this coughing thing over with and back to our normal boring routine. I did want to make a note of some of the amazing things that Lily is doing right now. When we got back from her g-tube surgery in October/November she lost the ability to use the upper part of her arms and it just killed me. She could only move them from the elbow down from that point on. Well then a while ago she began lifting her upper arms again but only once or twice a day...NOW she is lifting them up all the time, she can completely lift her left arm up and play with her ear, her hair, and anything she can reach then she can take both her arms and play with them on her chest and hold them playing with her fingers. It is so cute and amazing to see. Then today she kept working and working and finally got her fingers in her mouth..something she hasn't been able to do in forever. She isnt' always real accurate with her arms but still she makes the effort and does it! Even with all she has going on right now she can still get that arm up there to play with her ear..she is just amazing! Well, I thought I would share that with you all! Continue praying and we thank you all for it!!
February 25 Rough rough day! It started off with almost 2 hours of coughing followed by throwing up part of her morning feeding. Once we got her calmed down and stats stable she fell asleep because she was so worn out with all of it. She got up feeling fine with great stats and she spent most of the afternoon like that. Then she took her nap and of course I was on edge thinking that she would cough after her nap..well she did but not for very long at all. Then into the evening she started the coughing again and I couldn't get her to stop and so we took her back to inex her and when we got back to the bedroom her stats began dropping and dropping fast...she ended up at 24% and looking bad and not coming back up so we had to hook up the oxygen to the inex and get her back up plus cough her..it was very scary. Once we got her up (it took a little bit to finally get her into the upper 90's) she was on bipap and fell asleep again so we let her sleep. She woke back up again after about half an hour of sleep and was fine, smiling and ready to go watch her movies. We are just worn out with all of this and wish we knew what it was! We have just been at a loss as to what is causing this, is it reflux, a cold, a sore throat, the bipap? We just don't know..we are hoping that it has just about run its course and is about over with. She didn't get to bed tonight until after midnight, this thing has messed her scheduel up so bad. She is now sleeping pretty well I put her on a slight wedge to see if it helps at all....but we don't think it has anything to do with the bipap because she did all this way after her nap and without bipap..and we really don't think it is reflux because she does it without food and plus she can handle the big feedings through the day fine without coughing or spitting up so....maybe it is just a little cold that produces a cough. She still has no fever and her secretions are thin and clear (sometimes thicker but only in the morning usually). Please keep us in your prayers...it has been tough but I trust that God will get us through it. Other than that Lily is doing great, seems to be getting stronger and stronger even with all she has going on..she is AMAZING!! The most amazing thing is after all the suctioning, inexing, coughing, and destating she bounces back with a beautiful smile on her face....that is what makes me realize that she is going to be ok. God Bless!!!
February 26 Well, we had a good day today, not alot of coughing at all. She got up this morning and only coughed for about 5 minutes and that was pretty much it. We got up and enjoyed our shows and all that. She seemed to be tired today though which worried me but I suppose she needs to catch up on her sleep really. She didn't get to sleep last night until after midnight just because of the episode she had that wore her out and all that. She did get up at a normal time this morning (I figured she would sleep in but I was wrong)..so her naps seemed to come early. We did all our therepy's and coughing machine etc...then just layed around being lazy today. It is COLD, COLD, COLD outside today and we had snow too. Lily loved walking around on my shoulder looking out the window at the snow falling and watching Obie playing in it. She took a very early bath in the afternoon and we changed her g-tube too. She did great with very little crying when I changed it too. No episodes today, not much coughing, so all in all a great day. She was grouchy tonight because I think she was so tired but since she took a short "nippy nap" around 8pm she wouldn't go to sleep until after 11 tonight. Oh to be back on our scheduel again!!! Continue with the prayers...we appriciate them!!! Hugs and kisses to all.
February 27 Well, we had a good day but a rough morning again. She of course got up coughing then that combined with the air in her belly from Bipap she ended up throwing up. I got her inexed and CPTed and all that jazz and things shaped up from there. She went down for her nap and slept for 3 1/2 hours!!! When she got up she didn't cough (yeah!!) and we had a good night. She didn't go to bed until after 11 pm but that was ok. She did cough a little bit before bed but I got her on bipap and asleep and she was fine. She has a ton of secretions now and we are not sure why, she doen't really have swollen gums or at least they are not very swollen but could she be teething? Who knows but she has a river coming out of her mouth now!! She had a pretty good day though and that is worth alot to me!! She got to come in the kitchen this afternoon and help me with some cleaning and organizing. She enjoyed having my attention and talking to her too...it was fun. I thank God for the good days and know that everything works together for the good of those who love God. I trust God with my daughter and know that he has a plan for her in this life. He is watching over her and helping me in caring for her. He has not failed me yet and I am humbled and blessed to have such a special and unique daughter. She is truly God's gift and I thank him everyday for her. I do hate this disease still but I know that God's hand is on her and I do belive that she will have a miracle along with all our other babies. I just pray that God will grant me the patience I need until that comes!! Hugs and kisses to all and thank you for your prayers and thoughts.
February 28 HAPPY 9 MONTH BIRTHDAY LILYGIRL!!!! I figured that since there was no 30th in February that the last day of February is her monthly birthday. She had a great day, we had no coughing this morning getting up then she spent the early afternoon in the kitchen again with me doing things. She napped on the kitchen counter then got up and we played for a while on the couch and stuff. She napped this afternoon in my arms on bipap and it was wonderful to just hold her cradled in my arms. She seemed to enjoy it too! We are keeping her on slower feeds than usual because I have upped her amount some trying to get some more fluids into her. It isn't bad and I have a free hand to play with since the pump is putting the food in. The bad news of today is that she did have another coughing fit just before bed and it lasted about half an hour. I had to try to inex her but she just wouldn't cooperate and she ended up destatting down into the upper 60's but she came right back up but still I hate it. She has been very bad with the inex all of a sudden and will either hold her breath or breath against it. I will contine to keep doing the inex because it is a very important piece of equiptment. Well, I need to get off of here and get to bed, Lily is sleeping peacefully now. Hugs and kisses to all.
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