January 2 Happy New Year everyone! I hope this year will find a cure for my disease for me and all my friends who have it. Things have been better since I have been feeling alot better now. I still have snot working out but I feel better which is good. Monday mommy let me skip my PT since I had a cold and was coughing so I won again! I am back to playing with all my things again like my favorite...balloons. I am so glad that Lily is feeling better, I can see it in her eyes. She still has the lingering cough and snot but other than that she is doing alot better. It has been a week today since she got her cold so that is pretty good. Last week at this time things were rough...but we weathered it pretty well. Bet we don't make any more trips to the doctor until spring and cold season is over with. I hope that everyone had a Happy New Year and I too am hoping for a cure this year!! Love to all!!!!
January 4 And the snot keeps rolling on!! I never noticed when I had a cold just how much...SNOT...could be produced but with Lily since I have to suction it out I cannot believe just how much we can have! I feel so bad for her it seems like I am always coming at her with the suction machine. She is very patient with me and is always in good humor but I still feel so bad. Yesterday we got her latest machine..the inexsuffulator. It will cough for her and help to expand her lungs too. It will clear them out much like the way we cough to clear them out. We will start getting her "used" to it but do it quickly so I hope she does as well with it as she did with the BiPaP. She is feeling good now and is so funny with all her faces. She loves making me laugh at her and she is a total hambone!! When I get the camera out she puts on a show..she can be crying but I can get the camera out and she will smile through her tears...it is so funny. She is great and I love her so much. Well..I got another shot today and it was yucky. I started crying before I even got it because I knew when the nurse rubbed my leg with the little wet thing I knew what I was getting...and it hurt. But mommy says I need it to keep me from getting a bad cold and since I don't want another one of those I will take the shot I guess. Mommy has been kinda weepy today but she always feels better when I smile at her and make her laugh. I guess I will have to keep smiling and making her laugh so she doesn't get sad anymore. She said she hates this SMA thing that I have...I am not sure what it is but it makes mommy upset sometimes, then she looks at me and I smile and she says that everything is going to be ok since I smiled. I love to smile and make people happy.
January 6 Today is mommy's birthday and she said I gave her the best present in the world by letting her hold me. Since I have had this cold I haven't wanted to be held much because it kinda made me feel junky but today I am not having as much snot so mommy got to hold me (really I held mommy but don't tell her that) and I took a nap in her arms. She got to hold me 3 times today for a while each time..she even cried and said it felt so good to hold me. I love it when my mommy holds me. Happy Birthday Mommy!! Lily contines to get better..today was the first day that the "snot" didn't roll out when I was doing her CPT and she went most of the day without having to be suctioned. She is back on her Sodium Butyrate again and she is up to the 300 mg. per kilo. We are staying hopeful that it is helping. There are small things that we have noticed that keeps up trying it. The biggest thing is her grip..she didn't have a grip at all and couldn't hold onto anything and now..my goodness she can grab onto something and hold it so tight for a long long time. Her PT has noticed that with her. We did take her off of it when she had the cold so we are getting back to it again. Here are the things we have noticed with it: Her grip for sure. She can hold her legs bent (feet flat on the floor) alot longer and can even pull them back up if they fall a couple of times. She has more pull in her arms, she can pull back from you with her arms where as before she couldn't. Her legs move more..you can see the muscle contractions in them and can sorta slide them when laying flat. There is definately more muscle activity in her arms and legs..more muscle movement. We are hoping that the higher dosage that we go the more we get. The things we have noticed have been slight small things but she has been on the minimum dosage since starting her on it (this is month number 2..she has been at 250 mg per kilo). I will try and keep up with what is going on with the sodium butyrate for everyone who reads this. Another thing..she hasn't lost ground either..she can still swallow, she can still suck, she can still roll her head around in the flat postion meaning she can turn it from side to side (no small feat for an SMA child..and she does it on the egg crate thing). I am and continue to be amazed with what she can do. The only thing that I miss is being able to put her in her bouncy seat sitting up..she can only handle a slight angle now because she gets to breathing to hard. Other than that she seems to be holding steady with what she is doing. She has gotten floppier since October and has lost her upper arm ability..but since putting her on Sodium Butyrate she seems to be holding steady. Sorry this entry is sooooo long!! Thank you for keeping up with us in her journal..I hope that we entertain you as well as inform you to what is going on in our lives! We are looking forward to spring and summer when we can get outside more and know that cold and flu season is over with. God Bless all!!!
January 7 Today was a fun day!! I had two of my therepists here today..Mary my speech therepist and Beth my PT. Usually I don't like Beth but today I was in such a good mood that I enjoyed playing with her too! The Speech Therepist played alot with me and was putting different things in my mouth and letting me chew on them. Beth the PT did alot of stretching with me, and played with me making me try and reach for things with her help. She brought me a huge mirror so that I can look at myself..my whole self and see how beautiful I am. I like to look at me and laugh and talk. Mommy watched me play with them and thought it was funny! I took a good nap but didn't get on the bipap (mommy sorta let me go today so we could snuggle closer..bad mommy but I did good and it WAS nice to really get good and snuggly with my mommy) we slept for 2 hours together!! Then a busy night with my bath and all...just a good day! Mary Lily's speech therepist said that Lily has very good facial and mouth muscles. She is still swallowing on her own (not upright..it is harder for her to breath and do all that stuff) and she is turning her head well. She has a good suck and a good bite too! She told me I could feed her little tastes but agree's with me to feed her g-tube mainly. I have been giving her tastes of food so she knows her mouth is for enjoyment (that is what Mary said anyway). She talked and talked for Mary too and she was very happy about all that. She commented on how great she is doing with what she has. We really like her and are glad she is on "our Lily team". Beth came in right behind her and walked in on Lily's good mood so she got alot of good work done with her. She said Lily is doing great and hasn't lost ground for a while. Beth has been in and out since we have been having trouble with Lily for a few months with the throwing up, then catching a cold. Hopefully we can get back on a good scheduel and get some good work in. I want to clarify some things I said on the Sodium Butyrate....first of all I have noticed changes but in the above entry I made it sound like she is doing so much stuff...she is doing things but it is hard to notice them. When I say she has more muscle movement I mean that she can contract her muscles more but really there is not much movement there...she is still weak from SMA but small changes are good changes too!! The fact that we haven't lost ground since Lily has been on it is great!! She is holding onto what she has and that is worth alot. She isn't making much more movements than before though but I can feel things where other people cannot. I am hopeful that this is going to help many of our children but I am also trying to be realistic too...she is still very weak yet so strong!! It is hard to explain things but the fact that she is keeping the things she HAD when we first put her on it is a good thing and we are pleased with that. I hope I have made it clear!! If you have any questions about it please feel free to email me anytime!!
January 9 Yesterday morning (the 8th) was a rough morning..I am not sure why but she seemed to have alot of secretions and snot worked up. It seemed like I was having to suction her every few minutes, she would gag and sorta choke. I was convinced that she was catching another cold..I put her on her bipap and we took a nap and once she got up she was fine and had a great rest of the evening. Today she kinda started off the same way but not as bad and it seemed to work itself out pretty quickly. She didnt' really take a good nap this afternoon but she did fall asleep in my arms which is the greatest feeling of all. I just love to hold Lily and watch her sleep. Her face is so peaceful and relaxed..I can just look all I want. I start off with her forehead with her hair curling upon it then I move down to her beautiful eyes..she has the most beautiful eyes I have ever seen in my life. Her lashes are so very long and under those lids are the prettiest blueish, greenish eyes ever seen. Then on down to her button nose and to her little rosebud lips. Her little chin is dimpled as if in thought...she is amazingly beautiful. I know I am partial to her but if I was a stranger I would know she is so beautiful too. I am amazed by her spirit and fight she has in her. She never seems to mind me invading her with all the machines and things. She has started on her inexsuffulator and is doing great with it. I am amazed by her everyday. I wish she didn't have this disease though, I would love to be able to just hold her whenever I wanted, and to snuggle up next to her at night without all the tubes, wires, and things in the way. I know all these things are necessary for her health and wellbeing but sometimes I wish I could just take them off and put her in my arms and sleep with her like that. I remember when she was little and firstborn and just putting her in my arms and falling asleep watching her breath. She is the sweetest thing...along with her brother Nathan. I wouldn't trade all the times I have with them for anything, I have the best memories of them. I know how uncertain things are with SMA but I will only think of today, enjoy her today and let tomorrow take care of itself. I will enjoy what she can do and not worry about what she can't do. She is the strongest person I know..she has taught me so much in her short life. God has given me the best blessing ever...a perfect and most wonderful gift of a sweet baby. She is strong and is a fighter and I love her more than my life itself. I would give anything to give her the most painfree, easy life I could and I will spend my days doing that for her. I long to defeat this disease and erase it out of exhistance...I long to hear the words "SMA is no more, we can help you, there is a cure"...I only hope and pray it comes in time to help my most perfect baby. I have lost one to this horrible disease...I pray that I won't have to lose another.
January 10 This morning once again was rough..I am not sure as to why it is in the mornings but it is!! It seems like I have spoken to soon..she might be at the beginning stages of losing her swallow, just another thing SMA can take from her. She is still swallowing but it seems like it is getting harder to handle them now. Next week she will start on 350 mg per kilo of Sodium Butyrate so maybe that will help something. It is so sad when something like this happens. I knew it was coming but for some reason you are never quite prepared for it. I feel like all I do is suction her! I am having a harder time entertaining her too which is hard. I hate to have her watch videos so much but that is all she seems to want to do. I try to interest her in toys..I help her play with them but she doesn't seem to care to much for them, which I don't blame her I wouldn't either if I couldn't do anything with them. I wish I just knew what to do! Sometimes I feel like I am at such a loss and not sure how to go about anything. It is sad..so sad. Sometimes I feel like I am a horrible mother for not knowing what to do with my own baby but I am trying. Lily is always so patient and easygoing. When she was firstborn she was very demanding and while she still can be it seems as if she has changed too.
January 11 Well, things are changing...Lily is definately losing her swallow. She is having trouble handling her secretions and when she does try to swallow she does it really hard and sometimes it comes out her nose. She keeps getting so mad and frustrated! I can't imadgine what she is going through..it must be hard to go through that. I know as her mom it is heartbreaking! Well, I have cried enough...I am still not going to let SMA defeat me!! It may take things from my daughter but there will be a cure one day and I pray it will be in her lifetime!! I will do everything possible to make her life good and painfree. She is amazing through all of this..her smile is beautiful! Tonight she was laying in the kitchen while I was cooking and she was just talking and talking. She is beautiful and has a beautiful spirit. She is truly a gift and I am so thankful to have her. We have such good friends in this SMA group..I am so thankful to them for their help and support too. They know exactly what it is like to go through this! I also have a wonderful family..my mom has been amazing through all this. She comes and cleans, does laundry, and helps me by giving me a break and letting me just "chill". She has been a rock..she has been there with me to cry, talk, and whatever I need she is there. I thought she was amazing when we lost Nathan..she is amazing now too. My Dad, and brother have been great too. My husbands side of the family is awsome too...I know I can count on them for anything that I need...and if I just need someone to talk to. Thank you all...we will make it.
January 12 Today was a good day..I had mommy all to myself without Daddy here. I got up with Daddy through and had a good time with him. Then mommy got up and got me fed and changed and all...then all day long mommy played with me and let me watch my video's. She would make my legs dance with the music watching my video's. My favorite video right now is my Baby Shakesphere...mommy laughs because she said it is supposed to be for 1 year olds but I love it anyway. Next to that one is Baby Bach..then comes the Baby Smarts video's. I love to watch all of them over and over again. Uncle Travis came over tonight and played with me too..he looked at pictures of me of course then would show me them. I was getting tired then and was kinda fussy for him. I didn't take a good nap again today so I was fussy tonight!! Mommy said I was a bear!! Oh well..I am still cute. Well, another day of Amazin' Lily!! She just goes on. She tried to swallow sometimes and would get upset and frustrated but only a few times..the rest of the time she would push it out her mouth with her tounge. She did good. We had a good day, she was with me in the kitchen playing with her mobil..then we watched all her video's. She did great and she kept that smile on..that lets me know she is doing great. We are very blessed to have such a good baby. She has spunk...and lets you know when she isn't happy but that is good. She is great!! We are going to get through all this with flying colors!! She rode around in her inside wagon too tonight..she loves to do that. I honk and when we back it up I beep, beep, beep for her and she just laughes!! She went to bed early since she didn't get her nap in...UGGGG!! I wanted to take a big nap with her and half an hour later (by the time we get the bipap mask on, her pulse ox, etc....) she was up. I "rocked" her back to sleep but only for another 15 minutes..so then we were up. I know she would be in a bad mood tonight!!
January 13 Another pretty good day. My daddy got up with me this morning and played with me so mommy could get some sleep. I liked having daddy to myself too, he likes to sing to me. He playes trumpet in a band so he knows lots of songs..but he sings me "My Girl" alot. I love my daddy and am happy he was able to spend some time with me alone. He put me in my Lily Pod too and played with me. I liked that. Ahhhhhhhh..it was so nice to get to sleep until I felt like getting up (thank you sweetie!!). I felt comfortable with daddy handling the suction and all, he is getting quite good at it. I got up and let him go back to sleep for a while too. I have to brag on Lily now (of course..I am the mommy). She is the smartest little thing and just totally amazes me everyday! She has figured out that she can't swallow now (after 3 days..she is amazing) so she now pushes out her secretions with her little tounge..she still sucks on her passy but she will sorta blow them out without losing the passy..she is a case. Anyway, today she would make a little noise, not a cry, but a certain noise (mommy's will know what I am talking about...you just know those noises) to let me know she needs to be suctioned. Anyway sometimes she would forget and try to swallow, well when she does that it comes up and out her nose...well I would get out the bbg and suction her nose out and she would be fine, well I then would put back on the catheter and go ahead and try to suction out her mouth..NO WAY! She didn't need her mouth suctioned out so she would clamp those little gums out as if to say "No mom, I will let you know when I need my mouth suctioned out". But if she needs her mouth suctioned out she will open it wide for me..she is just amazing to me!! So smart and so happy. She never seems to let anything get her down, she is very smart for a 7 and a half month baby, wise beyond her months. She is what keeps me going and believing that she will survive this..her spirit and fight is just amazing. Not many people, let alone baby would have the spunk and fight that she has. These children with SMA are the most amazing children I know. When I look into her eyes there is a fire and spirit in there that I have never seen before. I know she is going to make it when I look at her. I know everyday is a challange but she is what keeps me going and in her 7 months I have learned so much from her. She has taught me so much about life and what it is about...I love you Lily girl!!
January 15 Pretty good day today (and yesterday)...but Lily wouldn't take a nap and got very grouchy tonight so at 6 pm I took her back to the bedroom in the mist of all her crying and put her on BiPaP and made her take a nap!! She slept for about an hour and got up in alot better of a mood! Nothing much today..yesterday (14th) was the PT day and she did great!! She got a new postioning chair to sit in and sat in it for a while. She can't use it on the base because it doesn't recline enough for her but off the base I can put it on the couch, recline it as much as she needs and let her sit in it for a while. Different position anyway. She did great with Beth and that made both of us happy! She also has been having trouble sleeping on her sides but tonight she seems to be doing very well on them..I put the egg crate padding under her Lambswool to sleep on. Also I think she might have gas (thanks to another SMA mom telling me) so I gave her the Gas Drops before bed and will continue to give them to her overnight and see if that helps. She is doing amazing!! She hasn't been suctioned as much today because she seems to be swallowing some..it kinda comes and goes really. She is certainly alot better with her head turned so she can push it out when she needs to so we make the best of it. She is smiley and happy and that is all that matters!!
January 18 Been a couple of days since any updates but nothing much really is going on. Lily continues to do great (except for the no napping issue). She is going through some sort of stage where she thinks she doesn't need to go back and take a nap on bipap, just catnaps through the day. I put her back on BiPaP yesteday afternoon and she just cried and cried. She got so worked up her stats were so low that I had to take her off the bipap and get her to calm down! I brought her back into the living room and tried to get her to be in her swing with the bipap on but she would have none of it either so I ended up letter her swing, kept the suction machine handy and kept her on the pulse ox machine to watch her. She did great and got to swing for almost an hour! She only had to be suctioned a few times in that amount of time so she did great and she maintained 100% stats the whole time too. Hopefully I can put her in the swing everyday for an hour or so just for a break. We rigged up the swing to a more laying down postion but it is still upright some and we were not sure if she would be able to handle it or not. She has also been having such a gas problem at night and so I have begun giving her gas drops and that seems to help too. We have also begun to give her a bigger dose of her Sodium Butyrate today (we give it to her 4 times a day throughout the day) so we will keep you up to date on that as well. I think I might just have to start a medical journal for her so I can keep up with all that. Another thing I did today is add solids to her feeds through the day. I only put in a half jar of bananna's but am working up so I hope she doesn't get constipated. Oh yea, on Wednesday we had a vistor!! Debbie Brock came and saw my sweet baby and Lily loved her! Debbie brough her a cute toy that says the Lords prayer and she loves it. Thanks Debbie!! Also thanks to you all for keeping up with the journal..I know it is time consuming but I like for everyone to see how our life is around here. Hugs to all!!
January 19 Well..tonight was interesting!! We ended up at Kosair Childrens Hospital tonight!! Lily was doing great this morning..then Joanne and Rob Forstall came down from Chicago to bring us a Kid Kart, and other things for Lily to use. Well Lily has never been fond of having her scheduel thrown off and having alot of company...so this afternoon she began fussing and having to be suctioned out just about every couple of minutes (which isn't normal for her)...Joanne and I were sitting talking and playing with her and she was fine. Her stats remained hovering around 98-100% so she was doing great. All of a sudden she got a look on her face and I tried to suction her and nothing..her stats were dropping to 38%!!! We ran her back and put her on bipap..then did the cough machine on her, we got her stats up into the 80's...then I put her Bipap on her and waited for the ambulance to get here and she was in the 90's bouncing between 92-97%....the men came in and listened to her and we decided for safty sake to go to the hospital to have her x-rays done and make sure her lungs were clear. We took the bipap and cough machine with us and they had her on the baby Ambu bag with O2 going on the way down there but she was at 100%. We get there and get her out and she was at 99% without anything and smiling as all get out!!!! I put her on the bipap when we got there and got her good and relaxed and she was fine. We were there forever (much longer than needed really) but she did fine other than every once in a while needing to be suctioned out. She was smiling and talking to everyone!! Her x-rays came back clear and we went home again (in another Ambulance since I have no way to transport her right now). She is now sleeping peacefully on bipap and doing great. It was quite scary and when that happens your calm and mind just leave you!! I was scared and unsure of what to do really. We did ok but still should have been able to handle that at home..it was probably just a plug from all the crying she has done today. She did great and we are very proud of our little fighter. The doctors were all very nice (with the exception of one nurse....always has to be one) and talked about how beautiful and healthy she looked given what she has. We made it through a crisis and I pray that we will be able to keep our cool if there is a next time. Praise God he kept her surrounded by angels!!! On another note thanks to Rob and Jo for the loan of the Kid Kart!! It will be nice to have something to stroll her around in this spring and summer..and to use in the house. You guys are awsome friends!! Thanks to all who pray daily for our little Lily..she is such a fighter and we are thankful for all the prayers.
January 20 Today was alot better than yesterday!! I had a good day really, I got to sit in my new kid kart (thank you Joanne and Rob) and mommy would push me around the house and I loved it! I got to help mommy clean the kitchen (something different to do), I got to watch all my favorite movies, and that was followed by a good long nap (since I was so tired from my episode last night). Mommy talked and played with me alot today..and Daddy played and watched cartoons with me this morning while mommy slept!! It was a good day. I am so happy that Lily was able to sit in the kid kart because I was worried that she wouldn't be able to handle it really since it doesn't go flat enough but she stayed in it for over an hour tonight without her stats dropping and only had to be suctioned twice which is pretty normal. She is getting really good at pushing her secretions out..and the towel under her head stays wet all the time!! She also go to use the bath chair that the Forstalls brough down too...that is her first bath for a long time. She has been getting sponge baths because I couldn't get anything to work for her that would support her yet get her flat. I was able to put her up at an angle in the tub and she loved it!! She splashed her arms in the water and just laughed and played!! It was great to see her have so much fun...the only hard thing is getting her out! She is so floppy it is hard to get her out with her so slippery too. But it is worth it to see her have so much fun doing it. We will make it a ritual, maybe not every night but alot of nights through the week. Then it was a video (she loves the baby Einstein Series...her favorite is Baby Shakesphere) inexed and BiPaP for sleeping. A pretty darn good day all around!!!
January 28 Well, I was having a pretty good day again until I had another one of my episodes happen! It was scary but mommy and daddy got me back up again. I was sitting in my kid kart again when it happened so mommy and daddy think maybe I can't handle the angle even though I am able to sit in it for along time..but oh well. Then I took a big long nap and got up and watched every video I have!! Mommy let me just veg out on my bean bag and do whatever I wanted to do. Then Noni came and watched them with me too. I was allowed to stay up past my normal bedtime too. Well, we made it through it this time with no calls to 911! I ran her to the cough machine when she hit 77% (suctioning wasn't working) and coughed her, suctioned her, then put her on bipap..she was up to 89-90%, then another round of coughing, suctioning, then bipap again and she was up to 97%. I let her rest on her bipap for a little bit then we took it off and I did a round of coughing with her to bring up all the junk..and man did I!! It wasnt' really thick or snotty but just alot of secretions so I hope we got it all out. I am not sure why she destated again but it might have something to do with being in the kid kart for to long...so we will just keep her flat or at a slight angle now and figure something else out. She is sleeping peacefully now on bipap and she had a long bipap nap this afternoon too (3 hours the most ever napped!!). She was tired I am sure. Our scheduel is completely thrown off now....but that is ok as long as she is fine I can deal with it all. I put more beans in her bean bag and made it really firm so she can lay flat on it too and that is nice to get her on. She can handle her secretions on the bean bag too which is nice. She is funny too..she can suck on her passy and then she will push it out almost to the tip of it (still holding onto it mind you) push out her secretions then pull the passy back into her mouth and suck again until she has to do it again. She is amazing with things like that. I have watched so much Baby Einstein movies I am ready to go NUTS!!! She has almost all of them now and she loves them. Tonight she also watched her Elmo movie which she hadn't really been interested in until tonight and she loved it!! I will have to keep her well stocked with the videos!!
January 22 I had a good day today! No episodes at all and I am glad for that. I got to do alot of things with mommy like do laundry, and clean up our bedroom (I sleep with my mommy since daddy works all night). It was fun to sit in the laundry room with mommy and sing and talk with her. Then mommy let me watch my video's in the bean bag before nap time. When it came time for my nap she layed down with me..I only slept at first for half an hour then was ready to get up but mommy wouldn't let me because I hadn't slept much that day..so I fussed around until mommy took the bipap off me and then I feel back asleep again and once I was good and asleep mommy put the bipap back on me again..I slept for a total of 3 hours!! Another record day..but it felt so good!! Mommy thinks I might be growing so I need my sleep. For the last couple of nights I haven't had bad gas either on my bipap which makes me feel good. Mommy says I sleep like a pig..but how do pigs sleep? Oh yea, I got to take another bath in my new bath chair from Joanne and Rob...I had so much fun! I got to wiggle my legs and splash my arms so much I didn't want to get out and the water got so cold but I just wanted to keep playing. Mommy and daddy laughed at me alot because I would yell and yell!! It was so much fun to move alot and the bath chair is perfect for me because it can go flat..or have a slight angle for me....it was great. Then mommy once again let me stay up late and watch a movie...then off to bed I go. Ok...I have noticed a couple of things going on now...first of all the PT noticed the other day the activity in her legs that hadn't been there before. She was extending her knee and pushing (not a great amount of force) against her with her legs...that is huge because she hasn't done that since she was a tiny baby. Next..her arm movements have gotten better..alot better. She has a few times lifted the upper part of her arms again...at least 2 times a day with both arms. Also, today I have noticed alot more that she is moving her head up and down..usually when I put her head to the side postion (since she has to drool out) she cannot move it but today she was, while in the side postion, moving her head up and down..looking up, then looking down. I am trying to be objective with the Sodium Butyrate but there are things that I am noticing..little things to be sure but little things with my SMA baby is huge things really. She is fantastic!! She is also now on a whole jar of bananna's in her feeding too...that is just a note for me. Also she weighs a whopping 15 lbs. and 6 oz..and is now 26 1/2 inches long. Big Girl!!!!!!
January 23 Another good day today...I got to play and of course watch my video's. I took another big nap (3 hours again) so I felt really good and rested for my bath tonight. Mommy got to talk to some friends today too..Kalair's mommy, Taleah's mommy, and Skylar's mommy. I have some friends in the hospital right now so I would like to send out my hugs and kisses to them...Skyler McAdam's, and Ethan. I didn't sit in the kid kart today but mommy said I will get to tomorrow. Goodnight!! We started the inexsuffulator today doing it 3 times a day now and she is up to the +40 -40 too....she was doing it only 2 times a day. She does great and is starting to work some with it, and it really pulls stuff up!! It is an amazing piece of equiptment!! I can't imadgine someone with her condition being without it. Also tomorrow I am going to start laying her some on her tummy too...I know she will hate it but she needs to be on it for another postion now. I will start her off at a couple of minutes and work her up to alot more. Also she had a ball in her tub tonight again..the bath chair is great!! It is worth the extra effort to get it all together just to watch her have so much fun!! She loves to spash her arms and she can really move her legs great with the water!! She can actually straighten them out almost..it is neat to watch her have so much fun in the water. Tonight as I got her undressed she began to get really excited because she knew where she was going...it was funny. Tomorrow I will once again try her for about half and hour in the kid kart and see how she does....of course I will keep the suction machine handy. Goodnight to all and I will keep all our sick babies in my prayers!
January 26 Mommy say's I am I spoiled rotten!! I can make so much fuss if they don't get the video on for me quick enough!! Oh well that is what I am here for. Had a great day..a great day to top off a great week. I haven't had any more "episodes" since Monday and have been feeling great and still riding in the kid kart. Mommy has been holding me some too which I like and I cry when she puts me down!! I like to go into the laundry room and look out the window with mommy holding me. I can see outside and dream about what we are going to be doing out there this spring and summer!! I have a huge back yard and I can't wait to get in my wagon and go outside. Mommy is starting to think about her flowers again too...she loves to plant then but she didn't do to much last year because she was pregnant with ME!! This year she said she will let me help her too. Great day..it seems to erase the bad days. She is doing so good!! I have been taking off her diaper and watching her stretch..yes really stretch her legs out!! With the diaper on she just can't seem to get them all the way there but without it she can move them until they are straight...it is great!! And she can not only hold her legs up, bent...but she can let them fall over some and then bring them back up again!!! She just seems to get stronger and I am so glad about it. She is still moving her arms some..expecially the lower part of her arms and her hands..she can move the upper part sometimes just not all the time and her head she has begun to move more too. She is learning so much...she only had to be suctioned about 7 times today..the whole day!! (not counting the inex...she has to suctioned for that) She is learning to gather up all her spit by clearing her throat...moving her mouth around..then out comes a stream of SPIT!!! Only an SMA mommy can fully appriciate this!!! She just keeps the towel under her head soaked but she is doing so well with it!! I can only imadgine how smart she is going to be!! We of course have watched all the baby Einstein videos again...this makes what? 100 times? Oh well, she loves them so it doens't matter but thank goodness she has begun to like Elmo too!! Tonight Brian was watching the Kentucky Basketball game and she just kept fussing and fussing until I put in her video then she was happy!! She has got to get her own TV and VCR!!! She runs the show around her that is for sure. She is spoiled rotten that is for sure...but that is how it is. She is sleeping peacefully so I think I will grab a book and veg out on the couch and RELAX!!!! Daddy is on duty in the morning so I can sleep in late!!
January 27 Well, Daddy and I got up and played this morning...and I helped him cook breakfast too while mommy stayed in bed later. She said it was nice of us to be so good! I had a couple of visitors today but I didn't really want to talk to much to them..it was my Great Aunt Jennifer and my Great Granny (who I am named after)...but I hadn't had a good nap yet and they came and interupted my video so I had to just cry at them. Mommy said I was spoiled to the core!! Anyway they all talked about how cute I was and all that stuff..I could have cared less because all I wanted to do was watch my video of Elmo. Then tonight mommy made me go into the kitchen and help her clean..I didn't want to but she said I needed a break from watching my video's then...and she said she wanted to spend some time talking with me too. I didn't do very well...I fussed and fussed until she took me back into the living room and put on MY VIDEO!! She did make me do some exercising though while the video was going..but that was ok. She put me under my "Lily Pod" and played with my legs some. Then she got me ready and gave me a bath...and I had fun playing in the water but didn't want to be messed with. We had a pretty good day today, she seemed a little fussier than usual and tonight when I put her on bipap (and even now) it seems like her heartrate is going up and down and she seems gassy tonight. I thought I had that it licked but for some reason tonight she is back to gassy so it should be a good night. I had taked her off breastmilk for a while and I didn't notice but it did help the gassiness and today I put her back on it (for her day feedings) and she is gassy tonight so maybe that has something to do with it. I will try her tomorrow off breastmilk and see what that does too. I didn't put much into her formula but maybe it is just to much protein for her to handle now. I sat down and tried to figure out her formula that she is on and wow..it is hard!! Thank God for Liz who has her figured out. I am going to learn but it is going to take a while..I am not a "nutritionist" at all. Liz does such a good job with it!! I did the Silver Nitrate stick on Lily's G-tube tonight all by myself..I was so nervous..I thought I would touch a part of her skin that I shouldn't but I did it good and will continue to get that nasty flap of skin off of there!! (they burn the excess skin flap that grows up out of the hole of the g-tube..you can also use them to burn warts, and things like that too.) Well, better head to bed....could be in for a rough night with gassy baby girl.
January 28 Well, it was a tough night with Lily, she spit up, had gas, couldn't get comfortable alot....and it all seems to be related to the breastmilk!! I am not sure why really. Well, she had a pretty good day today, seemed a little fussy today but nothing major really. She had her PT and once again Beth is impressed with her movement. Beth said she is moving her legs so much more...even more than last week. I always think I am seeing things when she moves them with me but it is nice that her PT is seeing it too. She is very happy with how loose Lily is and the fact she is moving MORE instead of less. One thing about Lily, if she didn't have SMA she would be constant movement and running all over I sure because even with SMA she always has something moving on her. She is always moving her hands, opening, closing, opening, closing. That is great and I love that about her. Even when she is watching her video's she is always moving her arms, her feet, her hands...it is good to see that. We don't know it the movment is due to the Sodium Butyrate or to the diet..or a mix of both. Whatever it is we hope to continue to see improvements like that. Yes, she did watch her videos again today (oh yea, I forgot I was going to order her more today!!). She feel asleep on my shoulder today too..and her stats stayed great so I just let her sleep. She loves it up there!! Oh yea and we got the ball rolling on her Tiger 2000 stroller too...and we can't wait to get it!! It will be exciting to be able to get her out this summer..of course we will still be cautious but we are going to do things with her too. Well, I better go to bed....tomorrow is another day!!!
January 29 Yuck..I had so much gas last night!! I had mommy up alot venting my tube and still I cried and fussed. Then I was fussy today too until I took my 2 1/2 hour nap then I felt better!! Pappy bought me my very own TV and VCR so I can watch my movies at MY LEVEL!! Mommy put it on the coffee table and let me watch it on the couch tonight and I though it was fun. Then after my bath mommy put it down on the floor to get me dressed and all for bed and I got to once again watch it at my level. It was fun!! I hope tonight I dont' have alot of gas!! I was up about every half hour last night having to vent her g-tube of the air!! She had a hard long night and so did I!! Tonight I turned the pressure on her BiPaP down to 14 over 2 so hopefully that will help (she was up to 16 over 2). I need the sleep as well as her too. She seems to be sleeping alot better tonight with that. I will probably let her sleep with it at that pressure for a couple of nights then move her up to at least 15 anyway. We had a rough day, since I was tired I was kinda weepy and depressed. I hate this disease so much!!! She is wonderful and handles everything..sometimes it is just me. I wish that they would come up with the cure very soon. We are planning our trip to NJ in May!! Should be fun to travel with her that far in the van. We will have to pack all of her equiptment so our Van will be full!! I am looking forward to meeting everyone then too. We hope to have her stroller by then too...I will have to get Beth on it so we can have it by spring anyway. Well, goodnight and I hope it is a much better night!!!
January 30 Happy Birthday to my girl!!! She is the big 8 months old now!!!! It seems like yesterday she was just here..so tiny. She is growing up so fast!! For her 8 month birthday her Pappy bought her her own TV/VCR combo and 3 new videos!! What a spoiled rotten little thing she is. Now she can watch her videos alot closer instead of having to strain to see them on the big TV. We can put it on the coffee table and she can see it better when she is laying on the couch or we can put it on the floor like when we are doing her exercises (she go the Elmocise video too..and that is what we "work out" to!!). I am so thankful that she has been so healthy thus far..and plan on keeping her healthy too. We are so looking forward to spring so we can get outside and look at all the pretty things...we are getting so tired of being cooped up inside!! Lily loved being outside last year and so I imadgine she will like it this year too. The nice thing about our place is that unless it is ungodly hot there is always a breeze to cool you down and we have tons of trees and shade so we can spend alot of time outside. She had a pretty good day today too...we took a good nap (3 1/2 hours!!). She is getting to be quite the napper. The gas problem seems better too since I moved her to 14 IPAP...tomorrow night I will move it up to 15 and see how she does with that. She also has found a new postion she loves...on my shoulder. She could stay on my shoulder for hours I think. Yesterday and today she took her morning nap on it...and her stats stayed great (I just had to check to make sure). It must feel pretty good to be held by her mommy..and she is still small enough that we can go all around the house like that too. Well, That is all for today....goodnight all!!!
January 31 The last day of January!! Pretty typical day today..nothing major except Lily's secretions..they have certainly picked up. I hate to say the word again because I am usually wrong but dare I say she has the beginnings of teething? Of course I say that for everything...well maybe she is teething so I am not really sure but she certainly has a ton of secretions coming from her mouth. She does really well with them and I hardly ever have to suction her but everyonce in a while she gets to much and can't seem to handle it...she did good today and yes of course watched her video's again. We did her exercises to "Elmocise" again and she thought it was funny to be moving and all that to it. She took a great nap...I had to wake her up after 3 hours!! She got up this morning at 6 am..I tried to get her back to sleep but she would have none of it so at 7 I got her out of bed and got her in the living room and started her movies..she was as happy as a clam. Noni got up with her too and let me go back to sleep and I slept so GOOD without having to worry about her or getting up to let air out of her tube. I slept like a rock (thank you Noni!!). Tomorrow Brian is going to watch her for a little bit so I can get out and do something for a short while. I am looking forward to it really!! Oh yea, she has a favorite postion now too...ON MY SHOULDER!! She loves it and she can just drool out onto my shoulder...it is awsome to hold her and she loves it and doesn't want to be put down at all. She even takes naps like that if she can and of course I love holding her. I want to say Happy Birthday to my Aunt Debbie!!!! I love you and will be glad when it warms up so I can see you again. Hugs to Colin too, and Payton, and all of my friends. Skyler..mommy is praying for you tomorrow!!! Oh yea, and thank you Debbie Brock for reading this and keeping up with me. It means alot for us to know that people care so much and I still like my toy you brought to me!!!
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