Thursday, March 03, 2011

Can I please have a plate of boring with a side of dull?

I have such high hopes of updating the blog more often and it just doesn't seem to happen. There is so much going on that I need to share, so bear with me while I try to compile a coherent post. I have also thrown in a bunch of random photos, just for fun (most of these are from December).

I mentioned in my last post that we were all sick again. Mike was better in a few days. I finally got better after taking an antibiotic for what turned out to be a sinus infection. Emily is still struggling with the remnants of a cold that just doesn't want to go away. I actually took her to the pediatrician last Monday to see if we could do something to give the kid relief. She was put on an antibiotic. Unfortunately, it seemed like her cold symptoms actually got worse after that. She has now been taking it for a week and a half and we are starting to see some relief. She still has a bit of a cough and she is a bit stuffy.

Sadly, the cold is the least of our worries these days. I mentioned in my last post Emily's odd reaction to strawberries. She would get red, puffy and hot hands. Well that has continued even though she has not had strawberries. At random, one hand (usually her right), will get very red and hot and it lasts for more than an hour. She has also had this happen to one foot (usually her left) and at times both hands have been affected. It is really bizarre! I ended up taking her to the pediatrician on Friday to talk to them about it (that would be the second time that we saw the pediatrician that week). That morning, her left foot was hot and red when I got her up and it stayed that way until the afternoon. Thankfully, they were able to see what I was talking about. Unfortunately, they weren't able to figure out why it was happening.

The doctor that I saw wanted to talk with another doc in the practice to see if he had any ideas and then she called me back that afternoon. He couldn't think of anything that they hadn't already covered. So they are now referring Emily for allergy testing (because of the strawberry incidents). She said that allergic reaction may be the easiest thing to rule out so she wanted to start there. She also wanted me to keep a log about the hot hand/foot thing so we could see if there was a pattern to it. Well, of course, I have not seen it since last Friday. So much for that idea!
Emily has really not been herself lately. She has been a bit irritable (that is putting it mildly). She has been whiny and having complete meltdowns. Some days I feel like I have to walk on egg shells because I never know what will set her off. She now cries every morning when I get her out of bed and change her into her clothes. That is more of a whine, so I just keep on going and eventually she calms down. The real fun happens around bath time. She is OK during the bath, but as soon as I shut off the water, she starts crying. I normally pick her up and lay her on the floor to dry her off and put on lotion. I do everything in the same exact order and the same way every time. Lately, she has a complete meltdown every time I do this. It makes the whole process considerably more challenging!

Even with all of that going on, Emily figured we needed to have some more fun. On Tuesday afternoon she decided to have a seizure at school. With all the sickness she has had lately, the school practically has me on speed dial these days. So when they called on Tuesday afternoon, I thought "what now?". The nurse told me she had about a 1 minute seizure. She had been really cranky beforehand, but after the seizure she was fine. So I didn't need to pick her up, but they just wanted me to know. That night, Emily had another seizure after bath time. It lasted about a minute and looked exactly the way that the school had described.
I had called her neurologist's office on Tuesday afternoon so I was just waiting for them to call back. I talked to the neurologist's nurse on Wednesday morning. I told her all the things that had been going on. She told me that the hot hand/foot thing sounded like autonomia (not sure of the spelling on that). She said sometimes kids that have had a brain trauma have issues with their nervous system going haywire. I told her about Emily's reaction to things lately and how her startle reflex seemed to be on overdrive. She was going to talk to the doc and call me back.

Just to keep things interesting, Emily decided to have another seizure this morning while I was getting her dressed. The girl certainly likes to keep things exciting! The neurologist's nurse called me back this morning. The doc wants to increase Emily's seizure med (we actually just increased it in January because I had seen two seizures in December). So we are going up another ml per dose. They also want us to schedule a 24 hour EEG. I knew that would be the case. When we first met this new doc in January, he mentioned a 24 hour EEG at that time. I told him I was not thrilled with that idea since the last one we did was a NIGHTMARE for all 3 of us! Plus, the test did not show anything last time so we were really excited to have gone through all the craziness for no apparent reason. Well, I knew we wouldn't be able to avoid it with all the wacky things going on with Emily lately. So I should be receiving a call in a few days to set that up.
Once that is done, I think I am going to run away to a tropical island so I can lounge around and sleep and generally do nothing (in my dreams!).

6 comments:

Anonymous said...

Sad news.

Beautiful pics.

I don't have a tropical island resort, but you are always welcome to come hang with me and we can hit the town girl-style!

Praying for a speedy resolution, and refreshment for you,

Lynn

Big brother, Little sister. said...

Dawn, wow what a challenging time. I love all the pics of your beautiful girl, she is so grown up and just devine. I love how the school nurse knew what the heat thing was over the Pead!( I have heard of this via on online cp group too) I really hope the seizures settle and that Emily continues to thrive at school ox much love to you all xo

Theresa said...

Remember : Deep Breaths, Lots of Patience, Tons of Love, Complete Understanding and a good support system and you will get through this. Also, you will never be given more than you can handle. It may seem so at times, but BELIEVE ME, (I KNOW) in the end you will be able to handle it all.

Anonymous said...

Dawn, I have no idea of all the things you go through on a daily basis but I do know one thing: You are a WONDERFUL mom and the Lord is using you in so many ways. Lean of him for your strength and patience. I didn't think it was possible for Em to get more beautiful, but these pictures prove that I was wrong! She is gorgeous. We miss you and are praying for you.

ANewKindOfPerfect said...

You sure do have a lot going on right now. I was going to say that the hand/foot thing sounds like dysautonomia. My Emily gets really red and hot hands or feet for no reason too. It's just a circulation thing, caused by the brain being abnormal. I hope that the EEG is easier on you all than the last one, and it gives them some good insight into what is going on. Seizures suck!

Stephanie's Mommy Brain said...

How about we meet in Florida for 4 days? We'll need 1 day to just sleep. 1 day to talk and catch up. And the other 2 days for laying around, watching too much HGTV and soaking up the sun. :D