So Long Sweet Summer – An Update on Maddie Claire

Fall officially starts next week, and for a girl who has always been all about summer, I’m strangely really looking forward to some cooler temps and a slower pace around here. Once cold and flu season is upon us, I typically schedule less appointments for Madison and don’t take her out quite as much since she’s so high risk. This summer has been pretty overwhelming, sometimes in a good way, sometimes not. But I’ve realized I haven’t shared a real update on Miss M in a while since we’ve been so busy! And what better way than to do so with a recap of summer..

So what have we been up to? A LOT is the short answer. But here are some highlights of the last few months:

Growth Hormone

As most of you know, Madison suffers from hypopituitarism as a result of her brain injury post meningitis. Most kids that suffer from this need to be on the growth hormone, but for some reason over Madison’s first year of life, her hormone levels were always in check. We knew it was likely she may need to start on HGH sometime down the line, and that time finally arrived this past summer. Her hormone levels were still actually coming back in normal range, but because we know she is deficient in all other hormone levels related to the hypothalamus, was in a low percentile on the growth chart, & since these levels vary throughout the day & there is no way to know whether we’re hitting them at a high or low point when we go for bloodwork, we decided to assume she was likely deficient and start her on a very low dose of the hormone to see how she did. And as most of you have commented over the summer, she has certainly grown!

Our chunky little monkey has thinned out and gotten much taller since we’ve started which has been wonderful to see! She’s really starting to look like a toddler and not like my little baby, but boy is she cute! Having a growth hormone deficiency doesn’t just affect a child’s height, and in fact that was the least of her endocrinologist’s concerns; but having a deficiency can also cause slower muscular development & bone maturation. Over the last few months we have seen Madison become much stronger, which while I can’t say for sure is because of the growth hormone injections, I do believe that is part of the reason. We’ll be seeing her endocrinologist in the beginning of October and it will be the first time he’s seeing her since we started. I’m super interested to see what he thinks about her progress so we’ll see how that goes in a few weeks!

CBD

I have shared a bit about our CBD journey on here before (catch up here and here), and things have been going quite well since we got her medicinal marijuana card! I have been making her oil from scratch using a 2:1 CBD to THC strain, and she’s been doing great, for the most part. We have noticed the last few weeks however that her seizures have become a bit intense again, meaning she cries and yells, and the actual spasm itself is quite pronounced; whereas they were coming across much subtler when we first began the CBD.

She has still been recovering from them fine, and continues to be very alert and active, improving her cognitive and motor skills quite a bit. I just recently made a new batch of oil at a stronger concentration so we’ll see how that goes before adjusting her medications. Her clarity has been so stellar since starting the CBD that we will definitely continue to give it even if we have to make changes elsewhere to better control her seizures.

Therapy

We officially started vision therapy over the summer which has been great! The Commission for the Blind has been super helpful in providing so many tools to help her vision that we can use with her even when she doesn’t have a therapy session. Because we’ve always had issues with Madison’s sleep/wake cycle, we continue to struggle with scheduling therapy during a time in which she’s awake and willing to participate. Madison is always all over the place with her alertness, but is typically consistent about being awake bright and early! (She doesn’t care that mama is NOT a morning person!). Because of this, we have moved her OT, PT, and now vision sessions to 7:30 AM, and even though I partake in these sessions bra-less & in my PJs, it has made such a huge difference in her participation!

Madison is ready and willing and has been tolerating each session like a champ. Her strength and skills have finally begun to improve and I’m really excited to see how she begins progressing now that we are able to optimize our time with her.

Madison also had a busy summer, not just with appointments and therapy and new medications, but in having some fun too! She traveled to New Hampshire and Rhode Island. She was a flower girl in her Uncle’s wedding. She swam in the pool, went to the beach, rode her first ride on the NJ boardwalk, and went on lots of walks around town and at the park.

Unfortunately we’ve also had lots of sleepless teething nights, some scary seizures, a hospital stay, and we missed out on some events that John and I had really been looking forward to. All in all I’d say she had a better summer than last year and I hope that trend continues. We’re always going to miss out on things because of Madison’s health, but I will say we’re very lucky to have such an understanding and supportive group of friends and family who never hold it against us. (We love all of you guys!).

While progress with Madison is very slow, it’s also better than taking steps backward which is something I’m very grateful for. Her health could spiral at any time, and sometimes no change can be a good thing. Although it can be boring not being able to venture out quite as frequently in these next few months, I’m hoping the fall will bring us low key quality family time and lots of good days! So here’s to another summer in the books with my little babe. Although we haven’t gotten to spend our days in the ways I imagined when I was pregnant, I’m glad she was stable enough to enjoy the things we were able to do! Oh, and I almost forgot to mention, probably the biggest highlight of all, she finally grew enough hair to ROCK THAT PONYTAIL!! (I waited two years for that “Pebbles” pony and I’m still obsessed with it lol.) Here’s to fall y’all!

Xo,

Kelly

1 Comment

  1. Nancy
    September 20, 2019

    You and Jay are such great parents. I am glad Maddie is doing better!!! I think about you guys all the time 🙂

    Love you all!!

    Love, Nancy

    Reply

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