Sorry I haven't posted in a while. Brynlee has had therapy 4 times a week the past couple of weeks so we have been busy. We had Brynlee's clinical appointment today. Good news is that her Dexa scan for bone density looks great! She has improved by ten percent and the scan lady was very pleased. Breath, Ok, not so good news. She had her MUNE testing to test her strength. The last time we were there Brynlee was 7.6. Today 3.3. She has regressed so bad that I can't stop crying today. I just feel that no matter how hard we try it is never going to be enough. I am losing hope.......
On her physical therapy scores it went from 24 to 19. Being sick 3 times in a row really knocked her out. She has gained 2 pounds in the last 3 weeks(Yay)! She is now in the 90 to 95th percentile for height and less then the 5th for weight.
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10 comments:
Oh Tara I am so sorry! SMA just sucks no other way to put it! I am so glad we got to meet in person last week. Brynlee is just an absolute doll!
I don't know how you do it. You're amazing! I'll cry for you if you want. :o) You're always in our thoughts and prayers!
((HUGS)) I am so sorry Tara ~ not the news we want to hear :( don't give up, tomorrow is a new day and it is BECAUSE of all you do and how hard you try that she is doing so well at age 2!!! you are right, being sick only makes it worse.... she will bounce back after some time to heal and rest because Brynlee has spunk. lots of love
I agree with Melodie...I think her scores will improve once her little body has had time to heal. Nicholas is really struggling right now and not wanting to feed himself much. He's also been unusally floppy lately. I am hoping it's a growth spurt. Hugs and prayers to you.
never give up, she will bounce back, might not be over night, but she will!!!! Hugs and prayers always Sheila and Sky
We think of you often, and hope Brynlee will bounce back soon. Being sick never helps. loving her is the best medicine we can give our kiddos, it may not cure the physical, but it sure heals the heart.
hugs and prayers
Julianna and Arianna
LOL sorry I should have introduced myself..I thought Summer had said that we were coming up and I did not even think that I have no real pictures of me on my blog so you would know who we were :-) We should be back out in 4 or 5 months so we should meet up for sure!
Tara I am SO sorry. I cannot even imagaine what it must be like. You and your sweet family are always in our thoughts and prayers. I wish there was something more I could do! We love you so very much!
i'm sending you a long distance hug! i'll call and chat with ya later! :)
I'm so sorry Tara. We came back from Swoboda's visit with decreased MUNE scores as well. Don't lose hope - it is all we have (besides our beautiful and fun loving little divas). Big hugs!
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