It's been 2 months to the date since Lynlee's transplant. 2 months! That's crazy isn't it. Part of me feels like it was just yesterday and the other part feels like it's been longer. The progress that she has made in 2 months is what makes it feel longer. I know I say it all the time and you might get tired of reading it but she is a whole new kid. I think I say it all time is because I still can't believe it.
Not only is she eating (still not 100%, but 100% better than what she was doing 2 months ago. She's getting there. She's doing better, she WANTS to eat! We are working with therapy now because she doesn't really know how. She's never moved food from the front of her mouth to the back and she just has very low muscle tone. We had our speech evaluation early this week. Her receptive skills are right on for a 28-36 month level but her expressive skills are low. Really low like around 12 months. I know its' not going to happen over night but her muscle tone will get better. And when it does her eating will be better as well as her talking (expressive skills.) And then I'm going to be blogging that she won't shut up! Oh how I long for that day!!
We are doing our other evaluations next week so I'll keep you posted on those.
I was going to blog on Wednesday, already had my pictures picked out but didn't find the time. Since Ryan's been off we've been working on the room. And yes I mean WE. We get up most days and get Lynlee her meds, have breakfast and start. We work all day long until around 5. I don't work past 5. HAHA. But of course Lynlee gets meds in there, and we stop for lunch, and I stop like 10 times to fix Barney or have her show me whatever she needs. But I can say that she plays so much better by herself. I usually check on her long before she needs me. It's funny to watch her play now. She has her own imagination now.
I don't think she just got an imagination in the past 2 months but I do the ammonia bothered her. I'm not sure if she was just so irrated all the time that she couldn't sit down and play or if it kept her from focusing or what it did but I do know it's better now. She's more happy, more content. Like I said she will play by herself. And she loves puzzles now. LOVES them. We will do them over and over. The other night the three of us sat in the floor and did the same 4 wooden puzzles for over 45 minutes. And this would not have happened before.
She also understands commands better. Which definitely works to my advantage. Last night I said Lynlee we are not going to go see your mommaw and papaw until your toys are picked up. Let me just say it didn't take her long to get the toys picked up and put away.. I also use this line a lot now. Lynlee if I have to do (insert command) then you can't watch Barney.. It gets done immediately.
And her hair... It's growing! It's shiny, it looks healthy.. Yes, it's thanks to all that protein she gets now. I also think her balance is better. And she climbs stairs, and climbs on the couch, and really climbs everywhere.
I'm not bragging (well maybe just a little) but I'm just trying to give an update at how great things are now. How healthy and normal she is. It's amazing how much has changed in 2 months.
I know that our journey post transplant has just begun. But it's a journey that we welcome with open arms. It's a journey that we are thankful and hopeful for. It's journey that we needed to take, and that we look forward to.
Go Lynlee!!!!!
ReplyDeleteSo proud of how far you guys have come in just 2 months!! It hasn't always been the smoothest of journey's, but I know God has been in control and will continue to be in control as you keep going on this life long path that is before you. I love reading about each new step Lynlee takes towards a brand new life-eating new things, enjoying playing with different items, and just the worry is no longer always hanging over your and Ryan's head about her ammonia levels every time her mood changes. Now she can act out like a normal toddler, and you know it's just her personality shining through ;-)
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