So sorry for not keeping up with this blog. We are finally settling in to our new condo and I have to say, we absolutely love it. One floor living is so nice in general, and especially when you have a child who has mobility issues. Samantha loves our new space and her walking has improved greatly. I'm sure she feels a sense of independence as she can get to anywhere she wants in the place--which was not true in our old house.
In general, Samantha is doing amazing and better than ever. I can only assume the study drug has much to do with that. She's been walking better than she ever has. I took her to the mall this week and for the first time ever she got out of her chair and walked around the mall by herself. I teared up watching her slowly toddle around all by herself. Sam eats more (by mouth) with her g-tube in place than she did prior to getting it. In fact, ,we have cut out her daytime boluses and she only receives her overnight feeds now. Her weight is a slight concern. But, for the first time that is because we are worried that she is gaining too much, rather than too little. We are slowly weaning her off of the vent and she now sleeps 4 hours at night without the support of the vent. It is very possible that soon we could be vent free. And, if she is able to be vent free for a period of time, we would also be able to remove the trach.
All that being said, our poor girl is sick right now. She's been extra junky the past few days and today she had a fever of 101. Fevers are always very scary for kids with mitochondrial disease, so we are paying close attention. We are encouraging her to rest a lot today, and are happy to see that so far she is still eating and tolerating her water flushes. I just hope the fever/sickness passes without any lasting impact on all of her new skills.
I hope now that things are settling down from the move I will be able to update more frequently.
Until next time,