Well well well, it has been a while since I've last written. I honestly thought that the blog would be done by this point. I don't have internet at home (it only works half the time anyways), so I will update you while we are back in KY. As most of you know, we went back home to Canada 3 weeks ago. The Dr. gave us the "okay", and simply sent us home with Claire's records and imaging. Being home was fun. I thought it would be very difficult adjusting to two babies, instead of one, but it hasn't. Of course there are those times when both babies are crying, and I just want to pull my hair out. It's in those times that I force myself to take a deep breath and think, "I am so blessed to have TWO babies that are able to cry, and that Claire is safe". And then the moment of anxiety passes. It's just crying, right?
At home in Canada, we have had a Physiotherapist working with Claire. She comes once a week. We were referred to a program in Ky called "First steps" since Spina Bifida can cause some developmental delays. While we are in Canada, we are working with the same type of program. Claire has been holding her head to the right side for a while, which they think is just an environmental occurrence. (I laid her on one side too much, or something.) Anyways, it has gotten better with exercises, and we will be starting to do neck stretches next week.
We are back in Kentucky as of Sunday night, for a little less than a week. Monday (yesterday) the 15th Claire had four appointments at Children's Hospital. There has been a lot of snow here in Ky, and the roads were filled with cautious, and crazy drivers. We also discovered that they need to hire MANY more plow drivers..since all of the roads were filled with snow. They just aren't equipped for this type of weather. Southerners! haha Her CT Scan was at 8:30am. They were suppose to sedate her, but she was so perfect that it only took 5 mins without sedation. Thank goodness! She actually thought it was pretty cool because the scanner was painted with little zoo animals, and they shown a projector onto the scanner to light up the animals. Her eyes were so excited, going crazy looking everywhere. It was so cute. We went straight up to Dr. Maugans office (Claire's Neurosurgeon) after the scan. Dr. Maugans brought the picture of the scan and told us that Claire is developing Hydrocephalus. "NO!!!" He said that he was really surprised to see the changes, since he was predicting her prognosis would remain the same. Naturally we were surprised too, since the doctor was so confident. Anyways, her ventricles are enlarged and there is some fluid elsewhere. He said that there is MORE than a 50% chance that she will end up needing a shunt. However, he said that sometimes this resolves itself, and we'll just have to wait and see. So we were given a list of symptoms and will be watching Claire more closely. Instead of seeing us every 2 months as originally planned, he wants to see us back in 3 weeks and then 3 weeks after that for another MRI and follow up with him. It is a slow progression, so we are still able to go home, and if she does have symptoms, then we'll have to see Dr. Maugans sooner. So, we'll just be praying that it resolves itself. Shuts typically have a lot of problems, and have to be replaced all of the time. It's usually a life long commitment, so, it's a big step. Here's a diagram of a shunt
http://www.nlm.nih.gov/medlineplus/ency/presentations/100123_1.htm (click to the different pages..1,2,3 etc.)
Charismatic Claire!
After the Neurosurgeon, we saw the Urologist, Dr. Jackson. She is just as wonderful as Dr. Maugans. Based of her previous tests, and what we have told her, she is doing wonderful. However, she wants to do more testing in a couple of months- bladder ultrasounds, and a VCUG (an x-ray
http://www.radiologyinfo.org/en/info.cfm?pg=voidcysto). We will not be able to totally tell what her overall function will be until we start potty training. They just want to make sure now that she doesn't have reflux of urine into her kidneys, and doesn't have too much pressure built up in her bladder.
Our final appointment was at the Spina Bifida Clinic. We finally got to meet Dr. Sonya Oppenheimer, Director of the Division of Developmental and Behavioral Pediatrics
(http://www.cincinnatichildrens.org/svc/find-professional/o/sonya-oppenheimer.htm) who wrote the first book that we received from our midwife about spina bifida. She said that Claire is a picture of health, and will see us back in a couple of months. The Spina Bifida Clinic monitors everything from Urology, development, Orthopedics and the list goes on. So, we will be meeting with them for a while. It's a one stop shop! Oh....I almost forgot...Dr. Maugan also referred us to a Ophthalmologist at Children's so that he can keep and eye on her (haha...i made a joke!) Hydrocephalus, and because Hydrocephalus can cause lazy eye.
Some good News....Claire has NO trouble eating and has doubled her weight!! She weighs between 14.5 lbs and 14.13lbs (she started off at 14.13lbs yesterday morning and finished the day at 14.5lbs. haha..we had a lot of weigh ins!) She's wearing 6mo clothing and is the exact same size as Eva was when she was 6 months. What a big girl!
Soooooooooo.....That is the update! On the way home to Canada, Paul has a Physical Appointment for Immigration in Toronto. In between all of this, Paul is looking for jobs, because he gets his Green Card on March 23rd, at his interview in Montreal!! Yippie!
Charismatic Claire!