Monday, August 25, 2008

Visit with the Neurosurgeon

Today the girls had an appointment with Dr. Trumble to review the scans done two weeks ago. Paige's CT scan came back with improvement of the metopic synostosis. She still has a slight malformation on the left side of her skull but will not need further surgery or treatment. She will follow-up with another CT in a year. Bree's MRI did not produce clear images because of her wiggling and moving. They were able to note that the sub-arachnoid spaces had decreased, so from a surgical standpoint she has been cleared from Dr. Trumble's care. However, in her first MRI it was noted that she had Agenesis of the Corpus Callosum (ACC - absence of the tissue that connects the lobes of the brain). This MRI, though unclear due to the movements she made during the scan, showed no signs of a corpus callosum. It was suggested that we contact her neurologist to speak with him about requesting another MRI with sedation to verify the findings. ACC is not life threating in and of itself, but when you add the diagnoses of Infantile Spasms and vision problems, we could be dealing with a bigger problem. Since the day they were diagnosed I will never forget the mentioning of Aicardi Syndrome. She could have all of these problems and not have that syndrome, but it will always sit in the back of my mind. So we will see what the neuro-opthomolgist and follow-up MRI says before I start to worry.

Thursday, August 21, 2008

New Pictures

Here are the pictures we had taken for Pete's birthday. These are the first professional pictures ever taken of the girls. We hope to add Pete the next time!







What are they up to now!

I've been so busy lately planning the wedding so I am finally taking time to update everyone on the girls. All is well on the home front. Last week we took the girls for a CT and MRI in Orlando. Paige's CT went better than expected...Arnold Palmer wanted to sedate her and requested that she fast(meaning no food for 21 hours). Pete wasn't too happy about that, so we were able to reschedule at a different facility that does not require sedation. After 5 minutes Paige was done with her CT and did great. Bree had a MRI...see cried the whole time...who wouldn't...it's so loud! We see the neurosurgeon on August 25 to see how everything looks.

Paige continues to thrive and Bree continues to do her best. Last week I spoke the the Speech Therapist at First Steps and she said the Paige's speech level is at her corrected age level and sees no need for therapy at this time. She will do a full assessment with both of the girls in October. Bree is finally sleeping throught the night and we have notices she's more alert during the day now. Sitting for Bree doesn't seem to be something in the near future but I work with her everyday...stretching and rubbing the stiffness in her hips and legs. She is showing more interest in toys and has even pulled herself to grab them. Her biggest hurdle is her sight. Her left eye is constantly turned inward and we're hoping the neuro-opthomolgist will have something to say about it next month. Paige is...well...Paige! She's very stubborn and if she can't get what she wants she will scream till she does. Everyday I am picking up the dog bowls because she loves to play in them. We have to keep Connor's bedroom door shut because she's always getting into something, and the countless times I have to go in her room and tell her to lay down and go "night night".

Everyday is an adventure with the girls and everyday I wake-up wondering what they will do today!

Monday, August 18, 2008

Happy Birthday Daddy!

August 18 is Pete's birthday and the girls want to let their daddy know that they love him very much.

Happy Birthday!
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Tuesday, August 5, 2008

Class of '98 Reunion







This weekend I celebrated my 10 year class reunion from New Smyrna Beach High School. The weekend long gathering turned out to be better than I imagined. I was able to meet up with many of my old classmates...most I haven't seen since graduation. Here are a few pictures from the festivites.

Saturday, August 2, 2008

Go, Go, Go!!!

The girls are really on the move now. There's no part of the house Paige has not explored yet. She may not be crawling on her hands and knees but she's getting around pretty good with the army crawl. She's also started to pull her self up on things and almost made it to standing. Bree has also start to army crawl...we thought this day would never come for her. She's much more delayed than Paige but we finally have hope that she may one day walk. I think Bree's limited vision is what is holding her back. She doesn't see as far as Paige and she's not as adventurous as her either, so to lay in one spot for most of the day is normal for her. She does like to spend time in her walker...life at a different vantage point. Speech is going better than anyone expected as well. They're always mocking sounds and seem to focus on me when I'm speaking to them. I love it when I put Paige to bed and she says "night night". When I walk in their room in the morning Bree will say "hey girl"...it's too cute. Paige has mastered the word "more" and signs it as well. She uses it when she eats. Paige also learned "no"...I'm always telling her to get away from the dog bowls so she hears no quite a bit. They are finally getting to a point were they no longer feel like newborns and more like little girls. They still have a long road ahead of them, but if everything goes as it is they are well on their way to a normal life.