What I Was Going to Say...

I was going to post an update and say how Macayla has had a great, grand-mal-free week and she seems to be on the mend. I was going to write how she seemed to be more herself this week. But this morning she showed a sign of seizure activity. She started pursing her lips repeatedly and that seems to be associated with the start of grand-mal seizures. So, I'm not going to write what I was planning to write. I'm not going to say we are out of the grand-mal woods yet. For, she may be starting a weekly pattern instead of a monthly one. If I don't say what I was going to say, will it help things turn out the way that I was going to say they would? Well, I don't believe in jinx but I certainly think we can say things hastily out of our lack of knowledge only to be proved wrong by the future. So, I will just be satisfied to say that today, Macayla has started off happy with a few signs of neurological issues, but thankfully no seizures yet.

We are thankful for this amazing girl and her brother. We are thankful for the God who gave them to us. We are thankful he gave us each other. We are thankful for the amazing blessings he has put in our lives. We are thankful that he is patient, merciful, loving and just. We are thankful for how he teaches us through our children. We are thankful that he loves us as we are AND that he loves us so much he won't leave us the way we are. We are thankful for what he did at the cross and that there is no condemnation for those who are in Christ. These things are not said in haste and the future will prove them correct as the present and past already have. Today, we give thanks to the One who gave us abundantly more than we could imagine. That's what I was going to say.

She May Be Done

As of last night, it appears Macayla's seizures stopped. We will see how she is later today. She is just beginning to wake up which is a good sign. Yesterday morning she was post-ictal and would not wake up. We are getting her Lamictal switched back to the brand name instead of the generic. We actually started that last night, so hopefully we can see some improvement.

She was in a good mood last night. She laughed some and fell asleep right after we gave meds, which is the norm. She had not been doing that on the generic. Granted, there are so many variables with this disease and the brain that we can never be positive if that was the cause, but the timing of these seizures fits with the medication change. So, we will see.

Thanks to the folks who have offered up many prayers and sent messages. We appreciate it beyond what words can convey.

Further Breaking of the Pattern

You can check out the previous post on this ongoing challenge. Macayla awoke this morning with smiles and even seemed more relaxed. She started getting fidgety around lunch time, but was still very reactive and happy. When seizures are lurking close by, she tends to have increased rigidity in her arms and she purses her lips repeatedly. (I like to think she just wants to kiss her daddy, but in fact it's neurological dysfunction. Of course, Jennifer is probably neurologically dysfunctional since she actually does kiss me!) Anyway, Macayla became more and more rigid and "twitchy" as the afternoon wore on and tonight she had a new kind of seizure. Actually multiple seizures.

She became rigid in her limbs, turned her head to the right and her mouth locked into and "O" position for quite a while. She had little versions of this just before the minute or so long one. She gave little sounds out just before they started. When it was over, she became post-ictal and has been out ever since. The way this presented was different than any we have ever seen. Fortunately, she breathed well through the whole thing and never threw up. So, tomorrow we will get blood drawn to check her Lamictal levels and make sure we have enough on board. We hope she will do well through the night and stay asleep and seizure free until morning. But she is just continuing to show us that Battens is not a disease of patterns.

Broken Pattern

Macayla has had five grand mal seizures so far today. They started at 7 a.m. and she has not responded to the emergency meds like Diastat and Versed. She is passing out after them for a short while, but as soon as she wakes up, she has another seizure. She even had one while she was still asleep. Fortunately, she has not thrown up much because she hasn't eaten all day. Unfortunately, she hasn't eaten all day. These seizures started off stronger than usual and her oxygen level has stayed low for a greater portion of the seizures than normal. I wish I could snap my fingers and fix it.

Hopefully, she is finished but they have been coming every two hours and the last one was one hour and 45 minutes ago. All of this to say, she had a grand mal last week and now she's having a series this week. The pattern this summer was her series of grand mals would come once a month. Thus, we think they are hormonal. It was unusual to have these a week apart and for her to have a different oxygen saturation. But in the bigger scheme, historically, the disease has progressed between Thanksgiving and Christmas each year. She may be following that pattern. Then again, our insurance said they would only pay for the generic version of Lamictal and that started last week. In the past, the neurologist insisted she be on the name brand. We will have to get the neurology office help us to see if this minor change could cause an increase in seizures. There are so many variables and pseudo patterns in this disease, it's hard to keep up.

Miss Hyper and Happy

Macayla had a grand mal yesterday afternoon and she got a dose of Diastat immediately. It caused her to throw up but she came through fine. We thought she looked a bit "seizure-ish" Tuesday. She was lethargic and seemed to feel bad. But yesterday she was miss perky! She smiled a bunch and even got vocal. She has been falling asleep around four in the afternoon and sleeping until 3 or 4 a.m. lately. So, yesterday it was interesting how upbeat she was and then to have the seizure after she fell asleep around 4 p.m.

She woke up this morning between 2:30 and 3:00 and I got up to be with her as that is the most likely time she would have a repeat seizure. But she only had clusters of small ones. She was miss happy and hyper all day and stayed awake until 7:45 this evening. She may have fallen asleep earlier, but a bad bout of hiccups kept her up. I am hoping this means she will be back on a more normal sleep schedule. We have been spoiled by the past year of her sleeping in a fairly normal pattern.

I had to suction her throat and nose quite a bit today and I am amazed how often she will smile in the midst of those procedures. She is such a beautiful girl!

P.S. Jacob's page has been updated!

I Wish I Could Make It All Better

Macayla has struggled with a lot of mucus and drainage in her nose and throat for over a week. It seems to be some kind of crude she passed on to me. But she can't process the drainage in her sinuses like most people can so she gags and chokes frequently. It's worse during the night. We suction her and at times get nothing out, even when I run the tube through her nasal cavity. Other times, we get a ton of gunk out and she clears up for a few minutes only to do it all over again. Mucinex and other meds have minimal impact. This is when I wish we had little nano-bots armed with nano-shopvacs that could maneuver their way through the sinus cavity and systematically remove all mucus and gunk. (Sci-fi medicine!)

I know how frustrated I get when I can't seem to get my throat cleared, but for the most part I can usually clear it. Macayla does not have the capability to clear her throat. Occasionally, she gets a good swallow in, but that is not always effective. We spray saline into her passages to try and loosen everything up and then suction, but it is an ongoing process. I know she must get frustrated by it, but she is such a good patient. She still smiles in the midst of all this. I just wish I could make it all better.