Maddie has now been on steroids for 36 days and we have 20 more to go (but who’s counting?) until she is fully weaned off them. They do not appear to be her miracle drug. Things have been highly variable on them, so it is truly hard to say what is happening at all right now. She has had days with no clusters and just a few of what we call her “single spasms” and then she will have a fifteen minute cluster and they will seem to be back on their regular every three hour schedule. I honestly have no idea what is going on.
In order to try to find out, we had a short EEG Tuesday morning and a visit with our Neurologist. The EEG showed some improvement, but in the 20 minutes they were recording she had ten minutes of seizures, so it is hard to imagine that it is that much better. The results of the Neurologist visit is that we have restarted the Vigabatrin wean and introducing a new AED, Lamictal. This drug must be introduced slowly and takes about 6 weeks to get to a therapeutic dose. So onward we go…….ever hopeful that we can stop the seizures…..but the optimism of early days is gone. It has been replaced by a skepticism and suspicion of what each next thing may bring.
So, what else is going on with us? We moved to Jacksonville last week. Or at least we moved our stuff to our house on base at Camp Lejeune. It is cute and old and very different from anywhere we have lived before. The floors are the original wood floors (with a new coat of Poly after each inhabitant) and the have all the requisite old house squeaks and groans. It is a about 1000 square feet smaller than our last house, and we even had too much stuff for that house. So we are trying to keep things simple and uncluttered and either donate or store everything we can’t picture needing for at least six months.
For those of you wondering why we have chosen to live on base after always living out in town in the past, I will explain. The base housing is 2.5 miles from Brandon’s office, so he is much closer if I were to need him suddenly (this happens often). It also means we have no monthly bills, other than cable or Internet, so when he leaves on deployment, if I just want to come back to Charlotte, I won’t have lots of bills to worry about. They also take care of our yards for us on base, so that is one less responsibility for me when he is gone. And it is also very safe, as you can imagine. The people on our street have been so welcoming already. There are also great running trails all over base and super playgrounds (not that Maddie is ready for them yet, but I can hope!) and our house is 1/2 mile from the water and fabulous views. So I think it is a good thing, even if it means getting rid of alot of our stuff. Neither of us has had time to enjoy our “stuff” much over the last 21 months, so it is not a big deal. Except that sorting through it all is a major undertaking.
I would not suggest moving while one’s child is on ACTH to anyone. We sometimes think we can handle most anything, but this has been tough. We really hope the sleep situation improves soon because it is just hard to be sleep deprived. I don’t really remember what it is like to have a good night’s sleep. The other night I got 4 hours and 45 minutes in a row and it was like I had died and gone to heaven. Sleep will return to our lives someday, I am sure of it.
After our appointment yesterday, my Mom, Maddie and I came on back down to Camp Lejeune. We had been back in Charlotte for our oncology visit and counts check. Her counts looked good, so that is always good news. It certainly is easier to handle the seizures when the relapse fear is pushed back down for a few weeks. We also had her catheterized Monday to follow up on her possible UTI and the culture was negative for any growth. So that, too, is good news.
We hope to stay in Jacksonville through early August when Brandon leaves for a training exercise in California for a month. During this time, I hope to find and hire I nanny we will love to help out in the coming months/years. Hopefully we can also get the house all unpacked and all of our extra junk in storage. We think that Brandon’s deployment is looming closer than we had originally planned so we want to spend as much time with him as possible. But his Battalion is incredibly busy right now preparing for deployment, and he is actually in field on an exercise right now for 3 days.
I think I actually have more to say, but I am tired and Maddie just fell asleep after having another ten minute seizure. Not good. So I am going to try to sleep while she does.
Please keep our amazing little girl in your prayers.
Love to everyone,
Liz, Brandon, and Maddie