Life is slowly moving along.
Brandon has been gone for over two weeks now. We have heard from him to know that he is safely at the location where his Company will be spending the majority of their time during the deployment.
I try to be super careful about sharing details about where he is to protect operational security, but I have a quick story to share that may give you an idea of how tough this can be. Last Monday, the day we were due to report into the hospital to start the Keto Diet, I had not heard from Brandon in a while and I knew he was supposed to be flying into his new location by helicopter. I was anxiously awaiting news that he was there safely as I personally am scared to death when he is in a helicopter (especially where people like to shoot at them). It was time for me to get in the shower. I checked my email one last time and saw nothing from him. So I decided to do a quick google search, just to make sure there was nothing in the news. And there it was “Three American Helicopters Crash….” And all of a sudden I was brought back to those terrible moments during his first deployment when I would hear a news story and freak out all the way until the next time I heard from him. About to vomit, I left Maddie to play with my mom, got in the shower and began to cry and say my prayers. When I got out of the shower, I checked my email again and found this short but incredibly comforting email from Brandon, “In place.”
And so, I relearned the lesson that checking google and watching the news is no good for me. There is no need to get that horrible feeling that makes me want to vomit. So I am trying to live my life, and get news of Brandon from Brandon only. And if all he tells me is that he loves me and he is safe that is okay. The rest I can hear about once he is home safe with me.
We began the Keto Diet last week and only spent two nights in the hospital. We have not yet seen the miraculous results we were hoping for from the diet, but we are seeing some improvements. The biggest change is that Maddie is basically sleeping through the night for the first time since the seizures started. I feel like a new woman. I had honestly forgotten what life is like when you’ve had a good night’s sleep. Amazing!
The other positive changes we are seeing are in Maddie’s cognition and level of interaction. We have reduced her dose of Zonegran quite a bit, so we are not sure if all the changes are from the diet, or because of med changes. Either way, the changes are great. She is much more verbal. She can answer simple questions. She can sometimes tell me want she wants.
For example, yesterday she was was giving me nose kisses (where we rub our noses together). I asked her, “Who gives you nose kisses all the time?” and she responded, “Dada.” That is their game they play.
When she got bored of playing, I asked her, “Do you want to go shop-shop?” Her response was, “Yeah” while nodding her head yes with excitement. She is just a perfect little girl.
We do have some challenges on the diet. She loves the food, but does not want to drink as much as she is supposed to. This results in me having to hold her down and give her water one mL at a time to try to get her daily allotment in her. Sadly, I have found that she is most receptive to this while she is disoriented during clusters of seizures, so while she seizes I get in as much water as I can. I wish it were not this way, but it has to be done. One big risk of being on the diet is kidney stones, and that is also a side effect of the medicine Zonegran. So it is very important that I stay on top of the fluids. I am trying very hard to do so. Despite my best efforts, when testing her urine to see if she is hydrated and ketotic enough, I have found blood in the urine. This is a precursor to kidney stones, though it can also be indicative of a urinary tract infection (for which she has no other symptoms) or could even be caused by small breaks in the skin from diaper rash. Her hiney is usually pristine (we are big on hygiene here), but the cotton balls which I have to use to test her urine are irritating her skin. Sometime you just can’t win.
Maddie’s lack of desire to drink may stem from a little bit of resentment about my finally weaning her from nursing. We had a pretty rough week here weaning just before the start of the diet. But the tantrums have passed; she still asks for it from time to time, but no longer throws a fit when I say no.
So until her urine stays clear of blood for a while, we are not headed back to Camp Lejeune because we need to be here (in Charlotte) where we can monitor it more closely. With the swine flu craziness everywhere, we are really trying to stay almost in isolation (it is tough when you have to go to the doctor or hospital!) We would love to be back in our home at Lejeune so we could be doing all her therapies, but there is some risk of sickness from therapists who have to work with other kids too. I am not really sure how I want to handle that yet. Plus, here in Charlotte I have lots of help from my Mom and Lance so that I can spend hours a day preparing her meals. For a mom (me) who already far preferred takeout to cooking a meal, this is alot of work. For those who do not know much about the diet, each of her meals is prepared by me weighing each ingrediently with a precision of 0.1 grams. If cooking were ever fun, this would certainly take the fun out of it. After she went to sleep last night, I spent 2.5 hours making just 6 meals. She eats 4 meals a day, so there is alot of time spent in the kitchen. But to see improvement instead of regression for the first time in months…..it is worth it to me.
So the diet has not had much of an effect on the seizures yet, but all the other changes are positive, so we are as enthusiastic and hopeful as we have ever been about any treatment for her seizures.
Love to everyone,