13

Last week we reached the number 13. 13 seizures counting her first day of 5. That's a lot of action for such a short time. We have called 911 almost every time so we are quite friendly with our local fire department now.  Just yesterday Elin and I had another visit with Neurology. I had a lot of questions and was starting to feel like Children's wasn't doing enough to control her seizures and assist us in finding some reason behind her condition. After her appointment I feel much more supported and like we have a new plan to follow in regards to her seizures and research linking her multiple issues together.
Our Neurologist believes Elin has some underlying syndrome (yet to be discovered) that will tie all or most of her medical issues together. It would be nice to have a name for it and a possible prognosis but we are still trying to figure that part out.

Our plan now is trying to capture some more info via EEG and also to change up her meds again. We started Lamictal about a month ago and added it slowly. It seemed as we progressively increased her dose her seizures became more frequent.  With Lamictal there is a possible side effect of rash and Elin has had a rash off and on for two weeks. We think it is heat rash and not a medicine induced rash but we are abandoning Lamictal at this point. She remains on KEPPRA and we are adding Topamax. The side effects of this drug are general sedation, loss of motor control, and other icky stuff. So not the best in terms of side effects but hopefully it will help control her seizures a bit more. We have to add this medication slowly so it will take a while to see the effect.
Elin is having two types of seizures. One basically she doesn't come out and is precipitated by vomiting and the other she can snap out of but she usually stops breathing during the seizure. We use Diastat (a form of Valium) to stop the ones that she can't snap out of herself. Every time she has one it is scary and horrible. We are constantly on edge and anxious. They usually happen in the evening and are more likely when she is tired. We have added an extra dose of KEPPRA mid day in hopes of branching the meds in the middle of the day but she still had two last week after having her mid day KEPPRA dose. She remains unpredictable as always.

We are hoping to get her eyes fixed soon. The actual condition is called Esotropia Strabismus (that's fancy for eyes crossing) for all you Fancy Nancy fans. We need her to be a bit more stable so everyone feels more comfortable sedating her for the procedure. I'm really hoping the new medicine can balance her out a bit. We had a feeding specialist out this week to watch Elin eat. She eats like a champ- but it has to be pureed. She gave us some tricks to start using to get Elin to work her tongue side to side and encourage lateral movement and eventual chewing. She chokes on anything that is bite size- even melt-able puffs. The specialist informed me of a little mantra they say in the "eating instructor" world- "it starts in the hips and moves to the lips". Basically when Elin develops better gross motor control her chewing and swallowing will follow suit. UP HILL BATTLE - why not?


On to more positive news- she is rolling from her front to back without any help now. Great for development but not so much for sleeping. She falls asleep much easier on her stomach but now with her new found skill she can flip over and play on her back in her crib to her hearts content. Glorious! Sitting is coming along nicely. We can actually let go of her and she sits on her own for a few seconds before toppling over. She is finding her abdominal muscles and using them finally. Shoulder strength is still an issue we are working on. She doesn't like pushing through her arms and that skill is super important for weight shift and eventually crawling and pulling up. She is using the M sound more often and signs more and all done and has her own sign requesting Itsy Bitsy spider. She knows who mama and dada are and can track back and forth between us when we ask her to find us. She still lights up when Anya comes around and pays attention to her. Anya has started reading books to Elin which both girls benefit from greatly. Anya doesn't read per se but she has several books she can recite so they are great for sister reading time.

We try our best to maintain our normal lives as much as we can. Despite Elin's somewhat erratic seizure behavior we still trucked up to the Hood Canal cabin for the fourth of July. It is always a tough call but we want to live our lives as best we can and create positive family memories for Anya too. Finding balance in every sense of the word is our biggest challenge right now.