Friday, May 3, 2013

What's Been Going On!

It's been a while, dear Blog. I am so sorry for that. We were offline for a few weeks for technical reasons and now we are back. I hope. I'll admit -- with less medical things going on, there's just not as much blog material to share. I may have to start blogging about cooking recipes and Project Life pages. Something. Anything. And can I say how awesome it is that I am having to search out blog topics?! That means that Miss Addie is rocking along. And that she is!!

On the medical front -- Addie got up to her full dose of her seizure med on February 19th. March 9th, she had another seizure. Same situation as last time. She fell asleep in her car seat early after having a restless night of sleep. So we have a pattern. That's a silver lining. This seizure was different. It was less involved. Her eyes were jerking and she threw up a few times but her arms and legs were not involved. Another pattern, another data point. Silver lining #2. I didn't know if I was supposed to administer her rescue meds for this type of seizure.  A complex partial seizure without convulsions. (Now that we know more, we aren't even sure if she has ever had a Tonic Clonic aka gran mal seizure before or if she just has really involved Complex Partials. Thankfully it doesn't make a difference with the medicine they put her on) So I called medlink and while I waited for the return call,  I went ahead and gave diastat at 10 mins. It stopped in time, so we didn't have to call 911 this time. After observing her for quite some time, I put her back in her car seat, with my sister riding in the back seat with her to watch her closely and we drove home to let her sleep. She only slept about 2 hrs, so the postictal stage was shorter with this seizure as well. Silver lining #3. So all good things to know and to work with going forward with her seizure plan. I talked to the doctor on call about what next... and she agreed that it was a great sign that her seizures seem to be getting less involved each time. A wonderful sign the medicine is doing it's job, at least partially. So she ordered a blood draw while we were in for the Botox to check her med levels.

Fast forward a week after Botox, and her levels were too low. 2.2 when the range should be 3.2-14. So yay! We had some room to increase her! With a bunch of logistically stuff I will spare you... we finally got her worked up to 100mg a day. She had started at 50... and there was some confusion as to whether she should've been started at 100 and there had been an error or if the doctor had started out low on purpose to give us room to bump up and not over medicate unnecessarily. Who knows.  In the end, we are up to 100 mg a day as of April 13th. She chews her 'bites' in the morning and evening like a champ. And momma is staying on top of it thanks to her handy dandy iPhone alarm.

Fast forward again, Addie had a cold last week. Ran a fever of 102 and again had a restless night of sleep. She also went to bed an hour and half earlier than normal and slept 2 hrs later the next morning. That was 15.5 hrs going between meds, when at most she goes 13. About two hours after she was awake, I saw her chewing on her left side only. I thought she had something in her mouth but upon investigation, couldn't find anything. She kept doing it, over and over. The hairs on the back of my momma neck stood up... and I thought -- was this a seizure? A simple partial as opposed to a complex partial. Basically less involved and they maintain consciousness through it. After consulting a few trusted hydro moms, I called the neuro nurse on call and she said "yep, sounds like a baby breakthrough seizure." So we know why -- a virus, fever, and going longer between doses than ideal. And it's another amazing data point. Every one so far has gotten less involved. I am loving this pattern we are seeing and pray it continues. Once she woke up from her nap, she did it a few more times. Chewing on her left side only, staring off a little zoned. She'd still play with her toys, or whatever but would just absent mindedly chew. After about 5pm she stopped and I haven't seen her do it since. Dr. K returned our call the next day (having been out of the office the day it happened) and said not to change anything. I know it may sound strange to be excited over a seizure, but the progression or rather regression of the seizure activity that we have seen after starting the medicine has been amazing. I am so cautiously optimistic about this! And thankful !! Of course, we still watch her like a hawk all.the.time. and carry her rescue meds everywhere. But we are just a tad hopeful !!

In other medical news, Addie is now the proud owner of a new AFO for her left foot. She is weaker on her left side because of her hemiparesis. The current theory is that her hemi was from her brain bleeds after she was born and not related to hydrocephalus per se.  She had an SMO (another type of foot orthotic)  but after we saw Dr. N in April, she decided that it's time for more intervention. Addie is hyperextending her knee when she walks. Her knee pops because her hamstring isn't strong enough to stop the momentum of the movement. So she has a guard up the back of her calf to stop that and the brace is hinged to keep her ankle stretched as she walks.  We had the fitting last week, and her awesome PT went with us to make sure we got everything done she wanted addressed. In the middle of the fitting, the orthotics tech was sitting in front of Addie, wrapping her leg with the mold cast, and Addie reached out and grabbed her by both ears and planted a wet smacky kiss on her lips. I was both amused and horrified. I think the tech felt the exact same way.

Last week, we were able to go pick up the brace. We were there for about an hour trying to get the fitting just right. I was supposed to bring shoes with me that would work and, naturally, as we were late leaving that morning I couldn't find her other tennis shoe. I looked everywhere. I finally had to give up and bring her crocs with me so she'd have something that she could walk in her brace in. Most likely the tennis shoes would be too small but I was determined to try before buying new shoes. After we got back, Addie went down for a nap and I set out to find that stinking shoe. I looked in toy boxes, in cabinets, in bookshelves, under beds, under couches, etc etc. I finally found it. In the storage drawer under the oven. Oh Addie.

After finding the shoe, I had to make some major modifications aka cut the heck out of the back of it to get her brace in the shoe. I had already cut the shoe before, so I knew the shoe was already destroyed. Nothing to lose. I got the brace in it, by golly. But it wasn't as good of a fit as it should've been so.... we set out for new shoes last night. After giving the boys the whole, best behavior speech, we were successful! She scored some snazzy new tennis shoes to go over them and they are so easy to get on!! After the debacle at Nordstroms last time, I was dreading the fitting. But we found a new place -- locally owned here in Austin -- and the guy got it right on the first pair! He rocked my socks and Addie's right off ! Customers for life!






Addie is trucking along in all other areas. We see her eye doc next week to follow up about the Botox. Her eyes looks great. They are still a little misaligned vertically now but so much better horizontally than they were so I am very curious to hear what Dr. R has to say next week. She has her 2 yr well check (OMG!!!!) the week after next, and then after her second birthday (May 20th) we have her follow up with Dr. G, her neurosurgeon. He hasn't seen her in six months so we are looking forward to that appointment. A quick MRI before hand and hopefully we are released for a full year! That is what I have heard -- once his patients are two, if they are stable vent wise, he wants one year follow ups. Not gonna lie, I can't believe we are here. That she is nearly two and that there is a possibility of going a full year without seeing her neurosurgeon. There will be much celebrating in our house if we get to that point.

Grayson is winding down fourth grade. He just had market day where we made 76 confetti eggs for him to sell. All to raise money for his school field trip. I never want to see another confetti egg as long as I live.


Jackson is nearly done with pre-k. Only about three weeks to go. He and I just made a police car out of a cardboard box for his school's transportation parade. Fun time.


We had a great day last weekend at the Play for All Abilities Park. Addie got to swing and go down a slide for the first time. The park is amazing. The boys loved it too but it is made so all children can use it. I think it'll be a favorite spot of ours over the summer, and the fact that they are building a Torchy's Tacos right around the corner from it -- SCORE!








We are eagerly looking foward to summer. We have some fun trips planned to visit friends and family and are scheduling down time as well! I know it'll go by fast so I plan to soak up as much as I can. I think I'm more excited about school letting out than the boys are!! C'mon summer!!!

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