And sometimes this happens… even to Char (haha)!
Photos by May Lily Photo
Shop Charlie and Shannon’s Looks
(sorry for the photo overload here. I didn’t have time to narrow them down before posting and I really just loved them all too much. Muh bad)
Happy one week before Christmas friends! I thought it was about time for a Charlie-babe update. If you’re new around here, Charlotte Rose is my 20-month old baby girl who was diagnosed earlier this year with a rare genetic disease called Congenital Disorder of Glycosylation, type 1p. You can read more about the journey to getting that diagnosis HERE, and then the diagnosis itself HERE.
Anywho, there are some things about to change around here, so here we go….
We’ve decided to get Charlotte a feeding tube. The short story is that Char’s whole life has been marked by struggles with gaining and keeping on weight. Since July, she has actually lost close to a pound, and little lady was barely even on the ‘percentile chart’ to begin with. So needless to say, it has had everyone very, very concerned.
The more detailed story is that Charlie’s seizures (infantile spasms, specifically) returned back in July, right at the tail-end of what we hoped would be a successful wean off of all her seizure meds. We had weaned down from having to give baby girl as many as five different syringes of meds twice a day to only giving her .5 ML’s of one seizure medication twice per day. And she had stayed seizure free. It felt miraculous.
But, as we were warned could be the case, when we neared the very tail end of the medication wean, the seizures returned – and with a vengeance. Try as we may we have not been able to get them back under control since then. Charlie generally has around 2-3 clusters of infantile spasms per day, and anywhere from 15 to 30 spasms (and sometimes many many more than that) in each cluster.
BLEH. You guys!!!!! It’s the worst. It. Is. The. Worst. Not even gonna front.
How all of that relates to the weight and feeding tube situation: seizures burn a ton of calories, so it was around July when the seizures started back up that Charlie’s weight began to go down. We have been trying different cocktails and amounts of meds since then in hopes of finding the concoction that will knock the seizures out the second time. So far though it’s been to no avail. Sigh.
We also see Gastrointestinal doctors regularly about Charlie’s weight and have her eating calorie-dense formula. And we’ve given it six months to see if we could get her weight up without a feeding tube. But again, to no avail.
SO, here we are. We’re being admitted today to the hospital where Charlie-babe will have a nasal feeding tube inserted. The approach is that we feed her by mouth first, then supplement her eating with the feeding tube. That way we ensure that she has her nutritional needs met.
The hope is that with the feeding tube, not only will we see her gain weight but also make strides developmentally due to having the proper nutrition. We feel very blessed because nothing about Charlie’s disease has appeared to be degenerative up to this point — she continues to make slow but steady developmental progress.
She has started rolling, can now clap her hands, and has way more head, neck, and trunk control than ever before. We’re still working on her being able to sit up on her own, and my dream is that one day we’ll see her crawl and maybe even walk. Praying praying praying.
The other hope is that this feeding tube situation won’t be forever. If she is able to catch up nutritionally and get some headway, we may be able to try again without the tube. The other alternative is a gastrointestinal feeding tube (GI tube) where the tube would be surgically inserted. Upside of that is that it would be completely hidden – no tube coming out her sweet little nose – but we’re trying to avoid having to do an invasive surgery.
There’s the update. If I’m being honest, I was initially really sad about having to do this. A lot of kids with CDG end up with feeding tubes because low weight seems to be a common characteristic of the disease, regardless of the type of CDG the child has (Charlie has type 1p, out of over 26 types of the disease. All the types are incredibly rare but some are far more rare than others. Charlie’s type is one of the most rare out of all the types.) But I was really hoping we’d be able to avoid having to go that route.
Ya know what though? It’s ok. It’s all going to be ok. We’ve reached a point where we feel unequivocally that this is what would be best for sweet Charlotte, and so we’re doing the dang thang and we’re going to pray and let Jesus take the wheel.
Thank you as always sweet friends for your endless support and prayers. We’ll take all we can get for this angel ray of sunshine.
Wish us luck today! We’ll be in the hospital for at least 3 days they’re telling us, and it’s kind of a tough time of year to have to be pent up in a hospital. Little bit sick of that place, on the real. But shut it Shannon – count your blessings girl! Three days is nothin’. It’s all in your perspective and the meaning you attach to things. I’m choosing to attach a good meaning to all of this – not a sad one. WE GOT DIS!
I’ll keep you all posted. Happy Monday!