A Little Bit of Normacy...

So I know a few of you have emailed about an update. Sorry we have really had a rough week with headaches still. I think we are on the road to a turn around yet again. Maddie has really been miserable and now seems to be showing a bit of relief once again...Unfortunately she goes under anesthesia on Wednesday and my biggest fear is that they will not see those silver dots...They seem to disappear as her eyes and headaches get better oddly enough.
She has had such a hard time in the last month with these things that her development seems to be slipping a bit. She stopped saying a lot of random words including the famous "quack quack." She also seemed to be less interested in concentrating on any type of skill that required much thought...Who could blame her with all these freaking headaches! She is taking up to 3 naps a day at school because of them and sleeping about half the time she is at daycare. Not much time for play or development. I think our whole family has been miserable because of this for the entire month of February. It is the worst feeling you could ever feel to watch your little baby screaming in pain, digging her face into the ground, running into walls, etc... and not be able to do a damn thing but scream inside with her.
A lot has gone on in the last week. We had a big team meeting (another one) at Maddie's school to discuss transition, safety issues, and development. I met the speech therapist who will be working with Maddie soon! yahoo!!! We talked about how Maddie was not quite ready for the toddler room. She is not really aware of her surroundings, does not look where she is walking, and does not have the greatest balance in the world...or reflexes. She has been in there before and is just a bit of a hazard we can say :)

So- the plan...Maddie will be able to stay in the infant room a bit longer and have an extra long transition...also as soon as the 1 on 1 is hired (in progress) she will have extra supervision in there. Next, Maddie will start wearing a (Super light weight) helmet to protect her head for a while she works on her balance and reflexes, along with getting used to the toddler room. Maddie's pediatrician has already typed a letter for the daycare so they can get a variance from the state to allow her to stay there longer and also nap in the infant room even after the switch. This way, even after Maddie moves to the toddler room, as soon as she gets a headache, she can go right to the infant room (which is dark).

So Friday we had to start Maddie on antibiotics again as she has been sick (w/ a cold) for a month as well. It seems as though when she is sick, her headaches are so much worse. So needless to say, the antibiotics kicked in right away and Maddie was like a super happy, goofy toddler by Friday afternoon. So yesterday I took a risk and attempted to take both girls out with me shopping...Put Maddie's hat and sunglasses on and brought the extra clip on shad for her stroller. It went pretty well! First time out in a LONG time with both girls. With the clip on shade for the stroller it makes it even harder for other people to look in the stroller which also helps Maddie freak out less...Yahoo...I have figured out a way to be a little bit normal again. It at least felt that way. Today we tried something similar but I think it was a bit too much. Rob took Paige bowling and I stopped in with Maddie for a few bowls. Then I took Maddie with me to a few stores...She kept her glasses and hat on almost all day...Unfortunately at Costco she took them off and I think the lights got a bit too much for her. She started throwing up...for like 20 min...over and over. It wasn't sick throw up...just very thick flem...she was making herself sick. I started to get worried but it stopped and she hasn't done it since. I think it just was a bit too much.

Later, after a very long 3 hour nap, we brought the girls outside to run around on the grass a bit. Maddie kept her gear on and again, for a small period of time, our lives felt normal. The girls were happy and playing and having so much fun. We hadn't been outside playing all winter except at night in the snow. This was the first time Maddie allowed us to keep her glasses and hat on...It felt so good for us all to be out there.

Maddie's pediatrician thinks we will soon need to switch to a more aggressive way to fight these migraines soon. Maddie would need to take a periactin...Which we had been avoiding for the very small increase it has in causing seizures. I think, after Wednesday's exam, we will need to do something different. She can't keep going through this. It is clear misery and I don't know when the next set will come or for how long. I am so thankful that Maddie seems to be a bit relieved today. Which means that we may be headed back to good days...at least for a little while.

I will update after Wednesday's exam. I have to admit, I am nervous. I don't know what I am hoping they will find...I want them to find SOMETHING so we can fix this...but the fear of possibilities are still cycling. What if they find something and it CAN'T be fixed...

We will be holding our breath until after Wednesday.