Friday, October 14, 2011 3:59 PM, CDT
Anastasia, a.k.a., Super Star, is doing GREAT, and continues to amaze us on a daily basis! Her PT and OT are working wonders, and it is amazing to see her figure out how to pick up anything she wants to, including something as small as a puff! It takes a little assistance getting there, but she can also sit on her own for a good amount of time. Crawling; however, is proving to be more of a challenge. I thought she was on her way to the “Army Crawl” but she has stalled out a bit. She can still get to where she wants to by rolling and making a little forward movement by using her legs and her left arm, but she does not seem to have the strength in her right arm to make it happen. She gets frustrated, which is frustrating for me to watch her struggle. Our awesome OT made her some pretty cool weight bearing splints this week, so here’s for hoping they help!
Crawling is not the end all be all, and if she skips it all together and moves straight to walking so be it. It is; however, the first major milestone that she hasn’t made. In the grand scheme of things, not a big deal, but I would be lying if I said it didn’t bother me deep down, especially when I see other kids her age doing what they are doing. I know it should not bother me in the slightest, and given all that she has been through and all of the progress she has made in all other areas, it is really just a small blip. But blips happen, and even when small can make a mommy kind of sad. Oh well, I am going to try not to dwell on it or give it much pause. Sometimes it just makes me slip back into that why her mind set. Why does she have to be the 1 in 100,000 to have Holt-Oram? Not a helpful or positive way of thinking, but I am only human and it just happens from time to time.
We had a great time at the Nashville Heart Walk walking for “Team Anastasia”. Thanks to awesome friends and family I surpassed my fundraising goal of $500 to a whopping $930. So exciting to see people donate their money and time to such an important cause. It was fun to see other survivors like Anastasia!
We are still working with genetics to determine if Annie really has Malignant Hyperthermia (anesthesia complication) or not. It will be helpful to know for her future surgeries. We are also scheduled for an EEG next week to make sure she is not having seizures. She is doing some weird shaking of her head, which we think is voluntary, but just need to rule anything else out. She likes to scare us, but then comes through, so here’s for hoping she keeps with that trend.
Thanks for reading…and for the continued thoughts and prayers!
Crawling is not the end all be all, and if she skips it all together and moves straight to walking so be it. It is; however, the first major milestone that she hasn’t made. In the grand scheme of things, not a big deal, but I would be lying if I said it didn’t bother me deep down, especially when I see other kids her age doing what they are doing. I know it should not bother me in the slightest, and given all that she has been through and all of the progress she has made in all other areas, it is really just a small blip. But blips happen, and even when small can make a mommy kind of sad. Oh well, I am going to try not to dwell on it or give it much pause. Sometimes it just makes me slip back into that why her mind set. Why does she have to be the 1 in 100,000 to have Holt-Oram? Not a helpful or positive way of thinking, but I am only human and it just happens from time to time.
We had a great time at the Nashville Heart Walk walking for “Team Anastasia”. Thanks to awesome friends and family I surpassed my fundraising goal of $500 to a whopping $930. So exciting to see people donate their money and time to such an important cause. It was fun to see other survivors like Anastasia!
We are still working with genetics to determine if Annie really has Malignant Hyperthermia (anesthesia complication) or not. It will be helpful to know for her future surgeries. We are also scheduled for an EEG next week to make sure she is not having seizures. She is doing some weird shaking of her head, which we think is voluntary, but just need to rule anything else out. She likes to scare us, but then comes through, so here’s for hoping she keeps with that trend.
We have been super busy with all sorts of appointments lately, including some for Daddy. Unfortunately, Stephen is now scheduled for surgery on October 28th. He has lost 50% of his hearing in his right ear due to a condition called a cholesteatoma. One of the 3 bones in the middle ear has been “eaten” (yes, those were the doctors words!) so it will be replaced with a prosthetic bone and he will have a graft to correct the perforation of his eardrum. Sounds fun, huh?!?! Not so much! Hopefully he will recover quickly and without too much pain, and will get his hearing back!
Thanks for reading…and for the continued thoughts and prayers!
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