And overall our Memorial weekend was good. We didn't do much, which suited me just fine. We took the kids to Justin's parents to swim in their pool. Anna and Justin warmed up to the pool after a while and ended up really liking it, but Ayva could not be persuaded. I just think the water was too cold for her and she wasn't up for that kind of temperature difference. Hopefully she will like it soon. Yesterday, we just hung out at home and grilled hot dogs and played outside. It was a little hot, but the kiddos really liked being outdoors.
Anna is doing well from the Botox. Days 3-6 are pretty much all the same. SHE CAN STAND WITH HER FEET FLAT ON THE GROUND NOW! You have to help get her feet in that position, but she can actually keep them there now! Her toes still are wanting to curl in still, but hopefully they will relax aslo. Here are some pics (sorry for the quality, they are from my phone)
AND FINALLY I WILL FINISH THIS POST.... I started writing this like 2 weeks ago, but am going to finish it- sorry.
Anyways, Anna is still doing well post botox. She saw the Neurologist last Thursday and since she will be SEIZURE FREE FOR 2 YEARS in August, we are taking her off the only seizure medicine she was ever on, Topamax. It has side effects like loss of coordination, trouble thinking, trouble w/ speaking and loss of appetite. We are all very hopeful that she will be able to do even better off this med and gain some weight!!
Here is a video of Anna walking!
Ayva also saw the Neuro last Thursday and said she is doing great. The Keto Diet is working well for her and we are weaning her off her Depakote!! :) If she continues to do well off the Depakote, we will move on to weaning the Tranxene. And if that goes well we will either take her off the Keto Diet or her Topamax and leave one or the other for a while. We are all super excited that she is doing well in the seizure department!! We also talked about Ayva's development....I just wanted to know, that since she was once able to roll over and hold her head up, if she would ever regain skills like that. He was VERY optimistic that Anna AND Ayva would both one day be able to walk and communicate! That was the most wonderful news. Even though both of the girls have CP, doesn't mean they aren't smart and cannot learn to walk and talk. I'm so glad that there is at least that little shred of hope for my sweet girls. They are fighters.
1 comment:
That's wonderful news, Sarah! I'm so incredibly happy to hear the diet is going well and both girls have such potential.
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