Been away too long.. seems like forever since I have sat down and posted about Bella's journey. Thinking about it I realize that we are settling in to this life. That somehow with the passing of time we are beginning our road towards acceptance. I say beginning our road, because I am not sure if I will ever "accept" this hand we have been dealt. But as time passes from those horrible first days, our family has begun a routine of daily life. Its amazing how the human mind pushes on.. even on those days you don't want to get out of bed.
A sense of "normalcy" has settled over our home. Not necessarily everyone else's "normal". But our normal. Bella continues to be well and is happy most of the time. We continue to see great strides in her progress. Her happiness always makes the days easy to take. She currently has physical therapy twice a week and Early Intervention once a week. We are waiting on an appointment with the Communication/Speech Therapy coordinator at Children's Hospital. In the meantime we continue with learning/teaching Bella simple sign language so she can communicate. She has really mastered the "more" sign and is using it appropriately! Especially when she wants more food! Her appetite continues to soar..she continues to gain weight and is filling out a lot. She has the most beautiful round face and though I never thought I would say this, her legs actually look chunky! It is very apparent that she is becoming stronger. She stands (with assistance) for much longer periods of time and is very solid on her feet. And the best part is she smiles while doing it. I feel like she finally has a desire to be mobile.
We have also acquired the "kid walk" which is a walker designed to help her walk on her own. While it is one crazy looking contraption, it is working and bringing Bella a sense of independence she is craving. I will try to post a picture soon.
As time passes it seems that Bella continues to work on her speech. She has become very "vocal" even though most of the time it is babbling. A wonderful thing happened a few days ago.. while playing with Jeff and I, she clearly said "Da Da". I can't tell you the joy those sounds brought to Jeff and I. Those were the first words Bella ever said before her regression and I think we both had a silent fear we may never hear them again. It seems that she is making those important "connections" in her brain that are giving her some "words" back. It gives us such hope.
We have Bella's gastro appointment back up in Boston on September 27th. Bella has good days and bad days with her stomach issues and I will be glad to have her checked out. It would be nice to find out if there is anything we can do to ease that discomfort for her.
Bella's hand use continues to be strong. We caught a biggie tonight actually, she picked up her fork from her tray and put the piece of chicken right in her mouth! We were so proud of her and she just sat there beaming.
As Bella's smile grows bigger each day and we hear her infectious giggle, there are moments of peace, where life seems bearable. She makes me strong, I actually feel it. And I treasure those moments. It makes the tough times easier to bear. And I am not going to lie...there continue to be tough times. I have made peace with the fact that at this moment my daughter does not walk or talk, that each day I have to dispense a bunch of different medications to her, that it is becoming more difficult to carry her as she gains weight, that she grinds her teeth for most of the day, oddly enough, these are part of our "normal"...but what I struggle with are the periods of inconsolable screaming, head banging and displays of frustration that are part of this beast called Retts. Even though I was told by her doctor that this is part of it, that you cannot console her, that she must work through it..it hurts. It hurts to know that as a Mother I can do nothing to soothe my baby. When it happens I just want to wrap her in my arms and whisper in her ear that everything is going to be alright..but if I do (and yes, I have tried) it makes it worse. Its hard to explain as much as it sounds like a normal 2 year old tantrum..its not. If you were to witness it you would know what I mean. Those members of our family who have, feel the same overwhelming helplessness.
Running a close second are the sleep issues. It is a struggle for Bella to quiet her mind and body when its time for bed. So many Retts girls are on medication for sleep and I am so glad we do not have to go that route. But it is hard to deal with.. Bella is clearly tired when we put her to bed yet she has such a tough time going to bed. On a bad night its a good 2-3 hours before she is asleep...on a really good night its no longer than a 1/2 hour. I would say the average night has become 1-1 1/2 hours. I am thankful however that she really has begun to sleep through the night once she is asleep. I would say no more than a handful of times through a month is she waking in the night.
Overall.. we march on. Treasure all the smiles, all the giggles, all the hugs.. and we fight through the rest. And I can truly say we are doing well. We are a happy family for we have the greatest of gifts...given to us by our Bella Angel..the understanding that a smile can heal a broken heart, that a giggle takes away saddness and that a hug is truly a magical thing.
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