Coming at you is an update on our Super Emmie. But first, you may want to get comfy. Grab a coffee or tea. Settle in. This is a long one.
Go ahead. I’ll wait. Comfy? Let’s get started…
Over the course of two days Emmie had an ophthalmology, neurology and orthotics appointments. She also had an MRI and travelled three hours to her grandparents. Then we travelled an hour both ways to her Atlanta appointments. To say she was a trooper is putting it mildly. By the last appointment on day two she was done though. Thankfully, her neurologist understood completely.
The more vocal and animated she gets, the more we get to laugh at her loopiness after MRIs. At least she wakes up happy.
1. Feet: We noticed this past weekend when Emmie was cruising that her right toes are turning in. After consulting with Dr. B, her pediatrician, we think it is metatarsus tarvus (adductus). We’re doing stretching exercises right now and will re-evaluate in three to five weeks.
2. Weight: Emmie lost weight from April to May. We’re not sure why. She also lost weight from May to this week. We know that could have been from the stomach bug she had the week before. We are going to be keeping a food journal this next week or so. We are also going to try some things to increase her calorie intake.
3. Horner Syndrome: Emmie‘s wonderful ophthalmologist confirmed that she is suffering from nerve damage due to the surgery. The nerve damage is called Horner syndrome and is a fancy way of saying droopy eyelid, slightly smaller pupil, and not sweating on the right side of the head. It could very well get better but this is a watch and wait scenario. So far, she is not having any problems with vision. She’ll see the ophthalmologist in six months.
4. Bracing: We are now on brace #5. The orthotist (we found out her title), Super Sidekick L, has been great to work with and has sought to think outside of the box to make Emmie‘s brace durable. She brought out another brace last week and told us it was actually the minerva device she was supposed to have. We tried it on but it is too big. The true minerva brace is a very hard plastic and all metal neck/chin frame. Leigh recognized that her current brace is not going to work long term. She said if it was a temporary one or two month thing we could get away with it. But since this is going to be long term, she wants to make something more durable. What she wants to do is take a brace that is similar to what children wear for scoliosis and attach the minerva extension to that brace. She has to have a new prescription for that so we talked to her neurologist and are awaiting his answer. Please pray that we get one soon. The new brace will make all of our lives so much easier.
Waiting on Super Sidekick L
5. Neurology: MRI shows that surgery removed 20% of the plexiform neurofibroma (tumor) that is in her neck. We know Dr. C, neurosurgeon said that he got 100% but Dr. W interpreted that to mean he got 100% of what he was going for. The MRI showed marked improvement in her windpipe area after surgery which was great to see. Dr. W also told us that they are very much aware that the bracing is temporary and that the only fix for her kyphosis will be surgery. He said that he felt like her kyphosis is caused by two things: the plexiform moving and pushing things and the tendency for NF kids to have more movable spines (more susceptible to kyphosis and scoliosis). They are really, really hoping the bracing prevents any need for surgery for at least two years. Obviously, if it lasts longer, then that is wonderful! We’ll keep going as long as we need to to get her as old as she can be for surgery. Dr. W is also looking into clinical trials. They (NF researchers/professionals) are discussing (this weekend in fact) opening up the trials to younger children. Dr. W does have one trial drug in mind with hopes that it will attack the plexiform and give more growing room for the spine. There are a lot of things to consider and discuss both for us and Dr. W. We should hear from him in a couple of weeks to know what he is thinking and we’ll go from there. Next MRI will be in six months.
These past two days have confirmed that God has placed us in a great place for Emmie to receive the best care from some of the nation’s top NF doctors. We are still in awe that Emmie is treated by one of the best NF neurologists in the country and he does everything he can to make her laugh and smile even after a very long day. Emmie‘s got a lot going on but we know the Lord is so much bigger than all of her stuff.
The end of day two and finally able to rest.
