Oaklynn has been regressing recently. She is having a hard time crawling. She has been sitting in the "W" position. She does this because it's a "lazy" way of sitting. She doesn't have to use any core strength or anything when sitting in this position. She also doesn't roll over her right side. When she is sitting and falls back, if there is something on her left that is blocking her from rolling over onto her tummy, she just cries until you come get her. She wont roll over her right side to get up.
(This is the "W" position)
I talked to her PT today about it and we are taking a step back and going to start working on crawling again. Because she is sitting in "W" position so often, her hips are very tight since she isn't working them out by crawling anymore. So now that her hips are tight, she doesn't want to crawl because it doesn't feel good. So now we work on loosening her hips and trying to get her to crawl again.
I had an emotional break down a couple days ago where I just cried for hours. It is one of the hardest things to watch your child slowly disappear each day. I know she is still the same person but she is getting trapped inside her body more and more. She is no longer pulling to stand, can't focus enough to put food in her mouth, when you ask her to grab something, you have to wait even longer for her to be able to do it (if she can), she isn't crawling, and many more things.
I sit and watch my little girl try SO HARD to do what seems like the easiest task for a typical developing child her age. I see the determination and frustration in her eyes as she tries to tell her hand to grab a toy. It seems like she is having to think harder and harder about doing things now. Remember those "
Seizure" videos I posted on here a while back (click on "Seizure" to watch the video if you haven't seen it yet)? Well I figure out that those aren't seizures. She does that when she is being over stimulated or when she is being pushed hard to do something. When doing PT, she would always start to do that because the PT would push her to work hard. Or when she is in public places and there are a lot of people or a lot going on. Now she does that when you ask her to do something small. Her brain is getting more and more clogged with dead brain cells that the signal her brain is sending out to get her body to move is getting more and more un clear. She is now doing this when working with any therapist.
I love my daughter so much and I would give ANYTHING (and I do mean ANYTHING) to get her to be able to experience life the way she deserves to. It is so difficult to watch her disappear and see her personality get trapped further and further inside her body. She is such a sweet little girl. You just have to have patience and understanding to know that she loves you and she wants to show you but can't.
3 comments:
Oh Whitney!
My heart aches for you as I read this, I know what those crying spells are like and it is not fun! And it is so hard to explain that you are not feeling sorry for yourself or wishing you had a typical child, it is purely the pain of watching them suffer! ESPECIALLY watching them try so hard to do what comes easily to others. I don't know exactly what you are going through, you are the only one who is Oaklyn's mom, but I can empathize with so many of the feelings you express. Especially your Love for her which is VERY aparent. Keep fighting for her voice & personality, her body may be "broken" but you know her spirit is not. I have never been alone in my fight for Cloey (as you know), everytime I stand up to face the impossible (the anything you were talking about) the Lord always fills in the gaps. Sometimes with ward fundraisers, guiding a doctors hand, or just in the form a person showing up at the right moment with the right information, or right thing to say. Or even in the form of a friend to talk to and do my hair so I could feel pretty when I had put myself last on the list. So keep doing Anything for her. Pray for what that is. I promise the Lord pays special attention to these souls and guides us with personal inspiration only we can recieve as their mothers. These little girls chose to come to earth, they are the valiant souls the adversary wants the most. The Lord Mercifully gave them "damaged" bodies so Satan can't touch them, and they chose us to be thier moms. Hang in there Whit. I Love and pray for your family often. You are an AMAZING mom!
Wow, this brings back so many memories! Not all of them happy, when it comes to watching your daughter regress right before your eyes! My daughter never walked, but she crawled and then one day she just didn't. Slowly her words disappeared. She was always able to sit up but as years passed, it got harder & harder to get herself back up when she laid down.
You are lucky they know so much more about Rett Syndrome now. I had to tell every Dr. we met that this is what she had and they wouldn't believe me. Most of them had never heard of it. There was no test at the time and all I had was a little pamphlet that a PT gave me. She said it reminded her of my daughter. Now they can start these sweet, beautiful
girls on therapy so much sooner to help them keep active as long as possible. Music therapy was such blessing, but a big fight to receive. My daughter lived until she was 15 and has been gone 18 yrs. now. But hearing you describe things brings back so many sad and just as many happy memories of my beautiful "angel face". I still miss her and always will. Stay strong, you can do this! We can do hard things!
Honestly as I read your post the exact first few words that Megan wrote ran through my head...
And the rest of her comment is pretty much the gist of exactly what I was going to write....
I totally understand how you feel! Melia used to scream and wail and throw herself on the ground when the therapists pushed her to do small things that she used to be able to do so easily... it is heart wrenching!
You are doing wonderful- and I admire your strength..
Whenever I feel so sad about the situation Melia has been put in, I first remember what Megan said about them being valiant souls who satan can't touch and then my ex mother in law who would always say, "Just wait for that day in heaven when she wraps her arms around you and tells you how much she loves you and is so grateful the thou are her mom"
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