I believe in the whole "No News Is Good News" saying, but a year without updating is just plain wrong, haha! I got caught up in the Facebook way of updating friends and family, but I will get back into Jordyn's personal blog. :)
To re-cap the past year, she got a feeding tube (G-button), gained a whole lot of much-needed weight, and is Happy and Healthy here at our new home in Buda, TX! In fact, she gained so much weight that it has become more difficult for me to carry her. She has her special SleepSafe bed upstairs in her room, but I like to carry her down to the livingroom to be around the whole family during the day. The thought of not being able to physically lift her and carry her up and down stairs scares me... John will always be able to carry her, but I'll need to figure something out when he's away on business. I better start eating my Wheaties...
Her G-button has proven to be the best decision ever. What used to take HOURS to do, takes only a few minutes. She gets all of her formula, all of her seizure meds, and it leaves more time to play and not worry about it all coming back out again. It has almost been a year since she got the tube and her quality of life has never been better!
Speaking of seizure meds, she is currently only on ONE medicine! There was a point in time she had to be on 6 different meds at a time, including a needle injection in her thigh and an FDA UN-approved medicine, but now she only needs Phenobarbitol. Pheno was her very first medicine when she was 12 days old, and has been the only constant medicine her entire life. It used to not work by itself, but miracles DO happen! She's on a pretty low dose, too, and doesn't get too tired from it. Pheno also happens to be one of the oldest seizure meds to be around, and veterinarians prescribe it to animals, also, haha! Whodathunkit?
Jordyn has tried swimming therapy 2x this past year. The first place was too small of a facility and too crowded, but her PT was a great woman who felt very comfortable with holding Jordyn. The second place was awesome, but the PT was very nervous holding Jordyn. I'm currently trying to figure out how to make it all work out, because Jordyn truly loves being in warm water! The PT has to be a perfect match for her- that is super important. Jordyn's torso/trunk is hypotonic and does not move around much, but her arms and legs are very hypertonic and flail around, so it can be difficult to not only hold her, but make her feel safe in your arms. If only we had a heated pool in the backyard, then I could be her PT and we could swim around all day! :)
Jordyn is 5 now, so that means she is ready for school! She won't be *going* to school, but we will be receiving the school district's help with adaptive learning aides and items beneficial to her senses here at home. I'll be setting that up later this month and will hopefully have more updates for the blog then!
Thanks for reading!
Kristen, John, Jacob, Jordyn, Joslyn, and Jaylee :D
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