GOOD NEWS: BETTER LATE THAN NEVER

Well it has been about a month since we went to see the orthopedic doctor for a 6 month follow-up x-ray of Isabel's spine. Most of you have probably heard the news, but I still thought it needed to be posted.

Before her appointment Ben and I took bets on what kind of progress we thought we would see in her spine. We both thought there would be improvement of about 10%. Boy were we wrong. I knew it had improved, I could tell by way her shirts were fitting. With her shoulders being different heights, it made the neckline of her shirts hang funny. Anyway....

Her curve went from a 37% curvature down to 18%. And the even better news is that the doctor said it may improve even more. We will check her again in another 6 months. I can't tell you what a roller coaster this whole experience has been. It was a difficult decision to send a seemingly normal child in for brain surgery. But in the end everything has turned out better than I imagined.

(a fun picture of Isabel getting her toe nails painted)

Scar...what scar?

Look at how well she is healing. With her hair, even if it is pulled up, you can hardly see it.

Great News

Isabel had an MRI on Thursday. It was at very interesting to see the progress she has made. She told me that she had already had an IV and so she was going to be very brave. She only fussed for a second when the needle was going in, other than that it was smooth sailing. I guess she is a pro now (sad to say). Well we had an appointment with the neurosurgeon immediately after the MRI. I love technology. He was able to pull up the images from her scan and give us her results. He said we could not have asked for better news. The syrinx (the large cyst in her neck that was compressing her spinal cord) is 95% gone. He said we could not have asked for better results. He said it will never completely go away.

We were thrilled. I had a feeling that we would get good news. It is amazing how quickly she has recovered. She complains a lot about tummy aches. Well I think a lot would actually be an understatement. We are going to see the pediatrician and I am going to go to the health food store and get some ginger. At times I think she is playing me, but other times I think they are real. It is probably a combination of both. Does anyone have any suggestions on how to deal with constant tummy aches? I would love any ideas.

We see the orthopedic doctor in a couple of weeks to see how her scoliosis is doing. I hope we have the same kind of results at that appointment. I took some pictures of her scar. I will post them soon. It is healing nicely.

Scarletina??

Well Isabel has been having some skin issues. She has always had mild eczema. You know some red itchy spots mainly in the creases of her elbows. About two weeks ago her eczema EXPLODED!!! This is the best way for me to describe it. She was covered with red blotchy scaly yuckiness. We went to the dermatologist and they gave us some steroid cream. This started to clear it up and just when it was almost gone she was covered with another type of rash. Fine little red pumps all over her body. Her skin was red and very itchy. This started on Wednesday. I thought maybe she was having a reaction to the steroid cream. I read the insert that came with it and it said that children can have intercranial hypertension with the use of steroid cream, so I stopped using that. We have enough brain issues to worry about, I didn't want to think about adding another problem. I thought it might be a reaction to my parents dog, Woody. So I gave her benadryl. Still no help. We finally went to the after hours clinic on Sunday night after I had exhausted all possible home remedies.
I couldn't believe it she had step throat with a scarletina rash. This is something related to scarlet fever. But she never had a fever or even complained of a sore throat. Leave it to Isabel to have all the odd symptoms to all sorts of odd illnesses.
Tonight before bed I put the usual coat of greasy lotion all over her sandpaper skin. She just cried and cried "I HATE FEELING GREASY, NO MORE GREASY LOTION!"

DOES ANYBODY HAVE ANY HELPFUL HINTS RELATED TO SENSITIVE SKIN ISSUES AND ECZEMA? I WOULD LOVE ANY INPUT YOU MIGHT HAVE. ISABEL WOULD ALSO APPRECIATE ANY ADVICE THAT DID NOT INCLUDE GREASY LOTION!!!

Post-op doctor's appointment

We had an appointment with Dr. Brockmeyer, the neurosurgeon. He said she is doing great. She will get another MRI in March to see if the surgey helped her syrinx. He told us they usually improve 80% of the time. We are hoping, praying and even crossing our fingers that it improves. If it doesn't it will probably mean she will have to have another surgery. But like I said we are very hopeful. We will also follow up with the orthopedic doctor to see what her scoloiosis is doing. We will do that in April. So far all is well and she is doing great!

Back to school

Isabel went back to school on Monday. She was out for a whole month. She came home early one day. I think it just wore her out. But I think she is glad to be back. It makes me nervous because I cannot watch her all the time now. Even though the doctor said she isn't fragile. I can't help but worry (after all she is missing a piece of her skull, a portion of her brain, and part of her first cervical vertebrae). I worry about her falling and injuring herself. As a parent I have always been a worrier. I often remind myself to take a deep breath and relax!! We see the neurosurgeon next week, I am sure he will reassure me.