Tomorrow is Paige and Bree's first birthday party. Everyone is so excited to celebrate their first year. We have many people coming, almost 50 people, that have never seen the girls. The theme is butterflies and dad is making a special cake for the occasion. Since they are technically 9 months old because of their prematurity I am baking a cake that has no dairy or egg just for them to eat. Their immune system is back to were it needs to be so we're not as concern with everyone being around them. I can't wait for everyone to see them in their new pink dresses. I still can't believe it's been a whole year already. With everything they've been through the year went faster then any of us imagined. Next week is a very busy week for the girls. They have somewhere to be everyday next week.Monday - Helmet adjustment in Orlando @ 11:00Tuesday - OT/PT in Daytona @ 2:30Wednesday - Dr. Carithers (pediatrician) @ 8:45 Conklin Center (vision) in Daytona @ 11:00Thursday - Dr. Wheeler (geneticist) in Orlando @ 3:00Friday - Dr. Desai (neurologist) in Winter Park @ 10:00 OT/PT in Daytona @ 1:30I will post new pictures as soon as possible.
A few days ago Dad was checking to see if Paige had cut a tooth yet. He found one! The next day I checked to see if it had cut through and found out she had two teeth coming through. We were surprised because she never got fussy like Bree did when her tooth came in. It's so exciting to see them growing up so quickly. Both girls have started to babble. Bree sounds like she's saying "hi da da da da" Daddy is very happy about that. Paige will go on and on when she babbles. All this talk is very promising since many children with IS are non-verbal.Last week the girls saw the Opthomologist to see if their vision was improving. He told us they have some farsightedness. He also said that Bree was tracking better and Paige was focusing better. Their visual development is as delayed as everything else. There is nothing he can do for them right now and would like to see them again in 4 months. So all we can do is continue to work with them to strenghten their tracking and focusing.Their birthday is quickly approaching and everyone is excited to see them. We're ready to celebrate surviving one year with our girls.
Over the past two weeks Bree has really began to shine. She is rolling over from back to belly and belly to back. She also cut another tooth, which makes two for Bree and zero for Paige. Paige was usually the one to do things first but Bree has really picked up the pace. Paige does have one trick that Bree can't do. She likes to put her toes in her mouth. They have both come so far since their diagnosis and we are very proud of them. OT/PT has given both of them a boost in their development. Their biggest roadblock is they have trouble bearing weight on their hands. They insist on having their hand in their mouth at all times which makes it hard to encourage them to push themselves up when they're on their bellies. So sitting is further in their future then we had hoped. I was hoping they would be sitting by their first birthday on October 29, but that doesn't seem reasonable. You take for granted how hard it really is for a baby to meet their milestones when they have disabilities. Their helmets may come off next month, so they may have better balance after that. We still take it one day at a time.
I decided to call Dr. Wheeler (the girls Geneticist) today to see if the test results on Bree came back. The nurse called me back and let me know that the MECP2 test for Rett Syndrome has come back NEGATIVE !!! The relief was only momentary because there is still another genetic mutation that could come back positive. We will be visiting the office again to have the CDKL5 test performed. We'll have to wait another 4 weeks for those results. The testing will not end there. There will be visits to Shands Hospital in Gainesville to discuss other options. So far Bree is doing well on her new med. She hasn't been as fussy but is more drowsy than usual. Both girls had their helmets adjusted yesterday and poor Bree's helmet is just too tight. Paige's helmet is still too loose. Hopefully they'll get it right next time. Tomorrow we will take the girls to see their neurosurgeon. He will evaluate whether the helmets are improving the flatness or not. We should only need to have them adjusted every other week now - one less trip to Orlando!Therapy is going as expected. Paige has met one of her goals so far. She is able to hold a toy in her hand and bang it on a surface. Bree has met one of her goals as well. She is passing a toy from one hand to another. Both girls are rolling over from back to stomach - although Bree is doing it more often. They are also sitting with less help and tracking objects more frequently. They are more vocal as well. They've started to make consonant sound along with vowel sounds (ex: de de de, ge ge ge). Development continues to go as expected.We've started to prepare for their birthday party. Invitation will be sent out soon. We're also celebrating because they will be cleared to go out in public. They been under quarantine due to their suppressed immune system caused by the ACTH that ended two months ago. So we'll finally be able to have friends and family come to see the girls. There are many people who haven't seen them in almost 4 months. So we're excited to have everyone over!
gone by. 2007 will be a year we will never forget. Our entire family has been through so much, especially the past 4 months, so it was a blessing that we were all able to celebrate together this weekend. Between their early arrival (born 3 months premature), both Dad and I lossing our grandfathers, and their diagnosis of Infantile Spasms we weren't sure how we were going to make it. With the help and support of family and friends we got through it all and the girls are healthy and developing (slowly but surely). They talk all the time (hi da da, bababa, growl and grunt, and how can I forget the screaming). Bree is constantly rolling and scooting around the floor on her back while Paige is holding her own bottle and sucking her toes. They both love to play with light and music toys and everything they get their hands on goes straight to their mouth. They've got a f
ew more weeks with the helmets; something we won't miss. Their vision is something we continue to work on and there is some improvement. The pictures are from their party this weekend. We had a great turn out and everyone had a great time. We want to thank everyone for being there for us this past year and we're excited to see what the next year will bring! 
