Today marked a big milestone for Emma – she lost her first tooth! It had been wiggly for several weeks, and VERY loose all weekend – so with a little help from me and encouragement from Pat, it came out!
Along with so many other things, this event is very bittersweet for me. I think it’s because it is something that I would naturally record in her baby book. However, when Emma was diagnosed with Tay-Sachs at 8 months, I stopped writing in her baby book, and to be honest I don’t think I’ve opened it since. Though I have always kept a journal for her, I have a very hard time with a baby book, as it documents all the big milestones in a child’s life. The first year after her diagnosis was extremely difficult. She should have been achieving lots of new milestones – yet instead, she didn’t gain any new developments. The things she had achieved, she devastatingly began to lose one by one. I have never seen a baby book that records a child’s first seizure…the day they lose their vision…the day they get a feeding tube, etc. Nor have I seen one that records the first and last time they roll over…the first and last real laugh…or the last breath they take.
I guess I haven’t thought about her baby book in quite a while, and losing her tooth brought it all to the surface again. So I’m trying hard not to dwell on the sadness. Instead, I will add her tiny tooth to the other special and happy memories that I keep of Emma – her beautiful locks of hair, her hand and footprints, her paintings, some sentimental outfits, and of course all her pictures and videos.
I gave Emma a haircut a couple weeks ago. Her hair was starting to get pretty long – so I decided the time had come. It’s now about 6” shorter, and very thick and wavy! I think each time it’s cut, it gets even thicker.
About a month ago, Emma started taking Dilantin for her seizures as they seemed to be more frequent. After taking it for 2 weeks, we noticed that her seizures were actually getting worse, and she was having stronger ones. One day, she actually had about 45. Though they are considered ‘partial seizures,’ they are annoying and disruptive nonetheless. Generally, her sats do not go down during a seizure – if anything, only for a few seconds. So we have been instructed not to use Diastat (an emergency med). Her neurologist decided to wean her off Dilantin and put her back on Diamox, which she had been taking previously, in conjunction with her regular Topamax and Clonazepam. However, over the last few days, she has stared having more seizures yet again – aaargghhh!
Since being on Diamox again, I have noticed that her pupils have been about the same size more often than not. When we took her off of it a month ago, her pupils would randomly be of different sizes. The doctor said this was most likely due to pressure on her brain. Being a diuretic, Diamox seems to help this. All right, enough medicine talk!
We have been trying to get outside whenever possible…though the monsoon-like weather lately has made it a little difficult. We try to sneak out between downpours! It looks like it may be drying out later this week. We are really looking forward to a visit from Aunt Debby, Uncle Chris, and cousins Sam & Simon this weekend!
Have a good week!
