*Lily's December Journal*

December 2001

December 9  My mommy talked to Colins mommy tonight and I got to talk to her too.  I don't like when my mommy isn't paying attention to me so I had to tell Colin's mommy about it.  Tonight is night number 5 (and a half) for sleeping on my bipap.  I don't like it when mommy is trying to get it adjusted but once it is on and I am asleep it makes me feel so much better and I can sleep better too.  Mommy don't like to see it on my face but she knows that it is making me feel better so she puts it on anyway because she loves me.  It helps me to breath better the next day too so I can get more playing time in with mommy, daddy, and noni.  I hope you will check back often now that I can update you on my days..mommy will fill in the rest. I can not believe the difference in Lily since putting her the bipap.  Her breathing is alot better during the day and she sleeps so great at night.  I am so thankful she took to it so well, I would be in tears if she was crying all the time about it.  She only cries when I am trying to adjust it on her face but once it is on she seems fine with it.  She has always been a good sleeper so I think that helps with her wearing it..once it is on that is it for her!  I am very proud of her and how she has handled it and that she seems smart enough to know it helps her.  All it took was for me to watch her breathing one night and watching her struggle...at that moment I knew she needed the bipap on for a break because she just couldn't keep up with breathing like that for very long.  I am also thankful that Lily has been so healthy so far (except for SMA), she has lost strength but that is to be expected..and she is getting so floppy too but other that that she seems like a healthy baby!  She loves to be played with so I am constantly moving her arms and legs, singing to her, and trying to keep her entertained.  I love being her mommy and will do anything to keep that big smile on her face.  I plan on keeping healthy and happy.


December 16-   Well, today I didn't throw up like I have been doing..this is day number 4 without it.  Mommy has this thing figured out now I think (thank goodness).  She got me a humidifier for my bipap machine and it seems to have helped me not to get so dry.   I feel so much better now in the morning with it!  I feel so much better now that I am back to talking..I had to stop doing so much talking because I had to worry so much about breathing but now I can talk and talk!  Mommy loves to hear me talk to her and I have so much to tell her now.  We had a good weekend..it rained and rained but it didn't matter, I stay in the house anyway.  I did get one of my Christmas presents this weekend..a tickle me Elmo!!  He laughs and laughes so I have to laugh too.   Mommy also made me put on all my pretty dresses and take my picture in front of the Christmas tree..I hated getting dressed and redressed but mommy seemed to like seeing me in the dresses...she said she bought them for me before I was born so I was going to put them on for a minute anyway!  I had to wear 4 different dresses..they were frilly and uncomfortable but mommy liked seeing me in them.  She layed me in my new beanbag chair to take the pictures of me..I like it there.  My Great Granny came to see me to along with my great Uncle Steve..they think I am precious and love to see me.  We did have a great weekend and I am so glad the vomiting seems to have stopped!  I am hoping to get her on her regular feedings this week since she has been on alot slower feeds since she started doing that vomiting.  I have decided not to risk her aspirating by feeding her by mouth so I won't be attempting to do it anymore.  I feel sad about that but it is more for me and the joy of feeding her than for her.  She seems happy with being fed by g-tube...but she will miss out on a joy that is for sure.   She is still doing great with her bipap and even wants it put on at night..she fusses if I don't get it on her soon enough for her.  I am seeing such amazing things since putting her on the bipap..she has started her jabbering again.  I hadn't realized how much she had stopped talking until she started doing it again.  Now she talks and talks all day long..it does my heart good and makes it easier to put the mask on her at night knowing how much it is helping her.

December 17   Today was a good day...mommy and I played and played.  The only bad part was when my PT came over (I don't like to work out) so I pulled my trick of pretending like I am asleep but I do alot of peeking to see if she is still there!  It usually works everytime but this week it didn't because I had another visitor..a speech therepist came to see me.  I did like her and once Beth left I played with her.  She sang to me and played with me and didn't make me work hard!  I also didn't throw up and so that made mommy happy!  Mommy is starting to make me take a nap with my bipap on in the afternoon too..but I have to have mommy take one with me..she usually needs one too.   Noni came over tonight and gave me a sponge bath (I take a big girl bath every other night in the big tub)..I cried and cried.  I don't like being messed with at night.  I played with my dolls today, looked at my fish, and played with mommy so I had a good day.  Well, the vomiting seems to be behind us now..I am so glad.   She is back to her normal feedings which is great.  She once again pulled her stunt with Beth the PT but Beth stayed anyway!  We had the Speech Therepist today too..her name is Mary and she is very nice.  Lily liked her.  She agreed with me about feeding her via g-tube now.  They worked with positions for her..she can only stand a slight angle now..she has a hard time sitting up at all so she spends alot of time laying down.  I am working to find out which angle is better for her.  She is so floppy now and it is hard to position her when I hold her but she still smiles when I pick her up and snuggle with her so I will continue to do it as long as she can handle it.   I love having her in my arms and she loves being in them.  She is my girl and the love I have for her is unmeasurable!  I will always cherish these moments.   Other than those things her days are pretty good enjoys certain shows like Oswald on Nick Jr. and Seseme Street (expecially Elmo).  I am sad that she watches so much TV but it is so hard to entertain her all the time...I only let her watch so much TV but she is so visually stimulated now..she can only move her arms so much and isn't really interested in toys..only me!  Sometimes mommy has to have a break too!!  She is such a good girl through it all and I am proud to be her mommy.  She is strong and is a fighter and will continue to be a fighter. 

December 20   I am feeling not so hot today..I had to go to the doctor and get my shots today so I feel yucky.  I cried for just a minute but when I got home I sorta gave mommy fits from all my whining.  She said she feels so bad when I have to get shots.   They also put something on my g-tube that burns it..makes it better looking or something like that.  Dr. Canby said I am looking good though and getting big and beautiful.  I like Dr. Canby because she is really nice and talks so soft and kind.   She has pictures of me up on her board so I think she likes me too.  Mommy got me home and let me watch my favorite TV show Oswald..then she spent the day trying to keep me happy which was a big chore for her since I wasn't in the mood to be happy.  She did a pretty good job though and spent the whole day with me..even took a nap with me which I like.  Lily got four shots today...and they hurt!  I am trying to get her caught up, these were her fourth month vaccinations since we have had so much going on.  I want to make sure she gets her DPT series because there has been whooping cough here in the county for the last couple of years from kids that haven't ever been vaccinated.  She felt pretty poorly today so I tried to be with her so much today and put everything that needed to be done on hold.  She went to bed a little bit early because she acted like she wanted to be on bipap..she only let me read one story to her tonight before she let me know it was time for the mask to go on.  I hope she feels better tomorrow..I hate shots for her.  I would take them for her if I could!!!  

December 21   Well, my legs were pretty sore today from yesterdays shots..and mommy had to go in town today for some of my things and left me with Aunt Debbie and Noni...I wasn't to happy or good for them because I just wanted my mommy today.  When mommy came home they told her how much I had cried and she felt so bad...but I smiled for her and made her feel better.  She looked sorta sad because she went to my big brother's grave site...so I felt like she needed me to smile and be good the rest of the day and I tried..but I didn't take a very good nap for her..but everything else I did I was good.   I felt alot better but my leg was sorta sore.  I did come home to a house of crying..poor Lily, she just wanted me today and I went and left her.  Her legs where she got the shots look red and ugly..the one where the prevnar when looks like a bump under it..poor baby.  She went to bed early tonight since she got up at 6 AM this morning!!  She had a tough restless night because of the shots I think..but she acts like she is feeling better just sore and tired.  She should be back to normal tomorrow.  Her step brothers come over tomorrow and stay until Christmas Eve..but they will be spending alot of time at families houses...to bad we can't go but I will not risk taking her out around other kids this year.  Probably not next year either..she will have to get a little older and be able to work with the equiptment more to go to the family gatherings.  We are going to make a video tape of Lily in her Christmas Dress and talking to everyone so they can see her and we can wish them a Merry Christmas. 

December 23   Well, I am fighting a cold right now...I am the one that never leaves home and I am the one that gets sick!  I am taking all the precautions I can, lots of vitamin C, wearing a mask around Lily and around the house (I even slept in it last night..talk about a hard thing to do), and I also am having her wear her her bipap more today just as a precaution..getting those deep breaths into her lungs.  Her stats so far have remained good so so far so good...I am also doing CPT and suctioning alot more too.  Mommy is not feeling to well so I am being an extra good girl today!  She is wearing this funny thing on her face when she comes near me...I don't really like other people fooling with me so she has to come close alot.  I am wearing my bipap today alot too because mommy wants me to make sure it helps me through this.  I think I will be fine though!   I am very sorry for all my friends who are not feeling so well today too...I wish I could send out my wet slobbery kisses to them!  Hugs to all!

December 24   Well, it seems as if the cold is on the way out..a short lived cold really so hopefully Lily will stay clear of it.  She is doing great right now and her stats are great usually 99-100% so that is good.  She is cheerful and talking so much.   Today is Christmas eve and so Lily and I have opted to stay out of the festivites this year and avoid the germs but if any family members read this journal please know we are thinking about all our family and are thankful for all of you and thank you for understanding why we cannot get together with you all right now.  Lily send her hugs and I hope you all check back often to see how big and beautiful she is getting to be.   We miss all of you all but feel it is better this way for now and probably for a couple of years until she gets a little bigger.  Merry Christmas to you all!!!   I am celebrating here at home with mommy tonight and tomorrow with Daddy!!   Hugs to you all and I love you....(added later)..well, today is almost over, Lily is in bed right now asleep so I thought I would add some of my thoughts on the holiday's this year.  In 1998 we lost Lily's older brother to the same battle that she is now fighting..things then were different, we were not aware of anything that could be done for him, we were not informed parents about SMA at that time and Nathan was already sick with cold after cold and was so weak.  He was such a fighter to fight like he did even when we were doing everything wrong, he just kept smiling and always had a wonderful dispostion.  We lost him right before Thanksgiving and of course that put such a damper on the holidays that year.  Now here it is year 2001 and last year at this time we had just gotten the news that Lily was a girl and that she was SMA free so while we missed Nathan we were excited that we would have a baby at Christmas time this year.   Well of course if you read the story you know that the test was wrong and that she does have SMA and once again it is putting a damper on the holidays.  I have alot to be thankful for..she is healthy thus far and is such a joy to be around.  She is a good girl and is taking to her therepy's so well.  The thing that is depressing is having to once again miss out on the festivites with her because we just cannot take the risk.  Brian went to his families tonight (they all celebrate on Christmas eve) and I did have the option of having Noni come and watch Lily for a short while so I could go and spend time with them all but I just couldn't leave my baby here so I opted to not do it.   It just isn't fair for not only us but for all the families who are battling this disease to have to give up something like this.  Of course in the years to come we could as she gets older, even possibly next year, take the risk and go on and take her for Christmas to the family which we probably will do...but not this year.  Anyway I just wanted to share my feeling this year but I am thankful for so much and so thankful for the wonderful people I have had the priviledge to meet who are going through the same things as myself.  We will all make it through this somehow and be so much stronger in the end.  All I know is that I love both of my children...Nathan who is in heaven celebrating; with the whole reason for Christmas with all the little SMA angels,and I am thankful that I have an angel here on this earth whom I love more than life itself!   I love you Lily and I want you to know that everything that your daddy and mommy do is because of our great and neverending love for you.  I cannot imadgine loving you anymore than I do now..but there is someone who loves you even more than myself...Jesus Christ and He is walking with us through this journey we are on.  I send love to all who read this and thank you for your thoughts and prayers that you have given to us...God Bless all and Happy Holidays.

December 26   Well, starting on Christmas night we had the start of our first cold...which of course is scary but we will make it through it.  Today she was such a trooper..of course she was cranky and out of sorts but aren't we all when we don't feel good?   She layed around on the bipap for most of the day today and watched her movies and her shows on Nick Jr.  She did great on her bipap (she was tired of it more toward the evening) and her stats stayed great all day usually staying at 98-100%.  I was so proud of the way she handled everything, not many almost 7 month old babies are so good about wearing something on their face the whole day.  She was ready to go to bed tonight and we had a little tougher time then..as usual a cold always knows when you are getting ready for bed and decides to make things horrible.  We got her CPT done, suctioned her out, gave her a vapor bath, had a little bit of spit up, and off to bed we went.  She seems to be sleeping comfortably at 99% O2.  I need to go check on her but she probably will not be checking in tonight since she is out of sorts....so goodnight from Lily.

December 27   Another day of the cold but Lily is holding her own.  She is such a trooper with it all and can melt my heart when she smiles at me.  She has her "yucky" moments but for the most part of today she did very well and was able to stay off of the bipap alot more than yesterday.  She did have to be suctioned frequently but we are giving her alot of extra water to thin everything out and we have the humidifiers going too.  We will be glad when this is over with but we are making it fine with our first cold.  She is so funny..whenever she gets to crying and can't get calmed down all I have to do is pull out my camera and her face lights up and she cheeses!!  At almost 7 months she is a ham, and such a little rotten butt!  She wants someone in her face entertaining her all day long..it is funny.  All the toys and things she got for Christmas and her favorite is her balloon and a pretty Christmas ornament.  Mommy tells stories on me..I am not a rotten butt....I just think everyone should cater to me!  After all I am the baby and what else are you supposed to do?  I am feeling better today so I hope that tomorrow I will be back to feeling alot better..I dont' like feeling like this..I feel so yucky.  Mommy talked to a friend of mine who is having surgery tomorrow, Adora, and I wish I could send her a hug and kiss.  Stay strong!!

December 28   I am feeling so much better today only I wish that I didn't have this cough.   Mommy is glad that I am smiling alot more and she actually got to leave the house for a little bit today while Noni and I played together.  I love my noni..she always plays with me.  Daddy is staying at Papaw Barnetts because he has a cold too and doesn't want me to catch it again.  Daddy should be back home tomorrow night again so maybe we can catch the "big game..UofL and UK"..of course mommy says I am a UofL fan and Daddy says I am a UK fan..me, I don't really care to much yet I only like to watch them run up and down the floor and all that.  I am so glad that Lily is feeling better..she was suctioned alot less today and spent only a couple of times on the bipap for her naps.  Her eyes were brighter and she was back to talking alot more.   She really was talking before bed..she is so funny.  I am still working on the toys..she doesn't have alot that she like to play with, more of me in her face is what she wants!  She love to hold onto her little Elmo and playing with her balloons.  I guess I will keep her stocked on balloons.  We have made it through her first cold...and did pretty well with it.  The only thing that I really had a hard time with is her coughing..poor little thing her weak little cough just makes her so mad!   I feel so bad for her when she starts and I just wish that I could do it for her.   She is back sleeping peacefully now..she had a great night of sleep last night and it looks like she will have another one tonight.  Thank God we are almost through with this one....our first one!!!  Hugs to all.  She is almost 7 months old too....YEA!!!!

December 31   Mommy wouldn't let me stay up for the New Year to come in..but I don't know if I would have made it or not I was feeling so yucky until mommy FINALLY figured out that I needed some tylenol!  I couldn't tell mommy that I hurt..but she finally figured it out and once I got the tylenol I was ok and was happy again.  Daddy is playing music tonight so my Noni, Mommy, and I are home ready to party.  They spent alot time playing with me and making me laugh so it was a fun night.  I am now 7 months old and feeling quite big now.  Mommy just wants me to get over this cold I have and I do too..but it is tough to get all the snot out.  Well, another day of the cold..I thought we were over it but the cough just lingers and works up so much junk!!  I feel like all I do is suction her out poor little thing.  She just hates to hear the suction machine motor running.  Today was horrible with the cold..her stats were fine and she was laughing and talking to Noni and Pappy when all of sudden she got this look on her face and her stats just dropped into the 70's..her lips turned purple and she looked gray..all within a few seconds!  It happened so quickly we are all running around trying to get things for her..finally we put the bipap on her and did some CPT and her stats started coming up again and she feel asleep on it.  From then on her stats didn't drop anymore but I will say it was very scary!  Poor little thing just looked scared and didn't know what was going on.  We handled it pretty well (with some help from my friends..thanks Liz and Angie).  We kept the suction and bipap machine handy for the rest of the day.  She must have some pain going on (I am sure she does with all the suctioning and all going on) and I have been giving her some tylenol to help her out.  Nothing for her cold but just something for the pain..sore throat maybe?   Headache maybe?  Poor thing can't tell me when she is sore..I just have to guess.  Well, we start a new year and I wish all of you a very happy New Year..I pray this year will find us with a cure for this disease..and I pray health and wellness for all my friends dealing with this as well.  God Bless all and "Chat with you all next year!!!".


December 2001 January 2002 February 2002
March 2002 April 2002 May 2002
June 2002 July 2002 August 2002
September 2002 October 2002 November 2002
December 2003 January 2004 February 2004
March 2004 April 2004 May 2004
June 2004 July 2004 August 2004
September 2004 October 2004 November 2004
December 2004 January 2005 February 2005
March 2005 April 2005 May 2005
June 2005 July 2005 August 2005