Making Strides

Much has happened since the holidays. The girls are done with their helmets and will not need to see the neurosurgeon until August. He has requested that Paige have a CT scan done at that time to follow-up on her Metopic Synostosis. As for Bree, she will have a MRI to check on the enlargement of the sub-arachoid space of her brain. They will see their Pediatrician in a week for their 15 month immunizations. The following week they will visit the neurologist for a follow-up visit. We're not sure if he'll request an EEG-the girls have been seizure free for 7 months now! They will also see the Opthomologist to make sure their eyes are healthy despite the CVI. Whether eye patches or glasses will help them right now, we're not sure. These appointments will be the last for some time. They have overcome so much and have finally accomplished some milestones. They are more active and alert; playing with toys and showing a desire to sit. They have transitioned to whole milk and Paige is drinking from a sippy cup. They are eating more solid foods and now have 4 teeth each. Paige seem to be focusing and tracking more and Bree loves to clap and sing. They continue with OT/PT/VT once a week. I'm hoping to get more PT to get them sitting. Their personalities are starting to show now that they're more active. Paige is the dominate one who is always beating up on her sissy, stealing Bree's binky out of her mouth and toys out of her hands. She likes to bite and pinch and enjoys rough play. Bree is very submissive. She takes everything Paige does yet is very snugly and loves to just cuddle instead of playing. It feels great to be so wanted now!

Merry Christmas !!!
I can't believe an entire year has gone by. It's been a year since the girls came home from the hospital. They're 14 months old today. Over the past few days they've cut their top two teeth and are going through a growth spurt. Since the day they've come home they've never eaten more than 4 ounces and now they're at 6 ounces with solid foods twice a day. They are rolling over all the time now. Bree still isn't holding her bottle-she not ready yet. We go next week to the neurosurgeon to find out if they can come out of their helmets. It seems like it was yesterday when we were waiting for them to come off the Apnea monitors.
6 Months Seizure Free!!! Bree continues to do well on the Keppra while Paige continues med. free. I always wonder if Paige's development is progressing quicker than Bree because of the meds. It's so hard not to compare. When I look at them they seem so happy; that's all that is important. I still dream of the day when they can look me in the eyes and smile.
Our holiday was spent with family. We were able to swap the kids bedrooms so the girls could have the larger room. Connor got new furniture for his big boy room. Everyone is happy now even though it's a little chaotic. It's amazing how many toys will fit in one living room. Between the two high chairs, two bouncy chairs, activity centers, Connor's hot wheel tracks and toys it looks like a day care.
Our only wish for the new year is continued freedom from seizures, getting caught up on all the medical bills, and for the girls to be walking by this time next year. It may be a bit unrealistic but even if they were sitting unassisted we would take it. Check out the photo album link for all our holiday photos.

More Good News to Share!!!

The final test results came back on the Rett test - NEGATIVE!!! We've finally come to a point were we can all breathe a sigh of relief and move on with our lives. To know that the girls will have a chance to walk and talk one day is amazing. They are doing great. Paige is really starting to focus in on things and making attempt to look. She is also holding food and bringing it to her mouth. She's mastered rolling over in her bouncy chair but not on the floor. She doesn't like to bare weight on her feet - she'd rather bounce instead. Bree is very different than her sister. She is doing very well with sitting and standing until she arches back. She is also scooting all over the place on her back and tummy. She isn't focusing or grabbing for things yet. Her left eye is always turning in so I not sure it she can see as well as sissy. She's not holding her bottle or bringing food to her mouth yet. We're debating whether the differences are due to the medication Bree is on. The helmets should be coming off soon - hopefully in the next month or so.

This weekend my uncle got married and I was fortunate to attend. Daddy stayed home with the kids so that I would be able to go. I was a beautiful ceremony and I so happy for them. CONGRATULATIONS UNCLE BUCKO AND AUNT TAMMIE!!!

Sunday was my birthday so I spent the whole day with my family. We went shopping for holiday decorations and went out to lunch. It was the FIRST time we'd ever taken all three kids to a restaurant and it went very smoothly. We came home and put up all the decorations then had birthday cake - my favorite - layers of chocolate cake and brownie and chocolate ganache! Yum Yum!!!

Right now life is good and we're all looking forward to spending the holidays at home with Connor, Paige, and Bree.

Happy Thanksgiving!!!

Thanksgiving this year was spent at my grandmother's house. My mother, sister and her family, brother, and all of my gang spent the day cooking ,eating and remembering all the things we're truly thankful for. We decided to fry our turkey which, I believe, is the best way to cook a turkey. The food was good but being with our family made it great. Our family has been through so much this year - the loss of my grandfather and Pete's grandfather, Paige and Bree's diagnosis, and the financial burden of have two sick children. We've made it though! Everyday has it's challenges but we get through them and we know that we have eachother to do it. Our family has been there for us every step of the way and for that we are truly THANKFUL.

Second Series of Tests

Last week the girls visited the geneticist to have the last series of test ran for Rett Syndrome. They only drew blood from Bree to save money since the test is so expensive ($2700.00 before insurance). It is assumed that if the test comes back positive on Bree it will for Paige as well. This test will be looking for a mutation of the CDKL5 gene. This particular gene mutation is linked specifically to Atypical Rett Syndrome. The test will be performed at Baylor University in Houston, Texas and will take 4 weeks to receive the results. We pray everyday that the results are negative and our daughter will have as normal of a life as possible. If this test comes back negative their neurologist would like us to take them to Shands Hospital in Gainsville for additional test. Yet again, more waiting and seeing!!!