It's funny...in only a few weeks S&E will turn 3. It seems like there is no possible way that 3 years have gone by. We have been through so much in such a short period of time, and it's truly remarkable the progress they have made. There are still many hurdles, but especially around this time of year I try to focus on the positives. Although their birthday will always feel a little bittersweet to me, it is a day of celebration, and I truly cannot wait this year!
One of the most exciting things to share is Edwin is walking more and more. And not just with his walker...INDEPENDENT walking! He went from taking a few steps, to literally walking around! This includes stopping, turning, and purposely walking in a controlled way. He is also a safe walker...dropping to his knees when he loses balances as opposed to falling backward. His type of cerebral palsy (he's completely hypontonic) is relatively rare, and it was difficult for anyone to predict how he would do gross motor wise. For the longest time he couldn't sit up, couldn't crawl on his hands and knees, and certainly didn't appear like he would be able to stand or walk independently. But over the past few months, and really weeks, he has made unbelievable progress and we are extremely proud and excited about what this can mean for him as he gets older. Although he is not yet 3, and he is globally developmentally delayed, he KNOWS he wants to walk, and knows his peers and sister walk, and he wants to so badly. It is heartwarming to see him try and continue to try and now accomplishing his goal. My Christmas wish is for him to basically use independent walking as his main mode of getting around within short distances. I believe this wish will come true this year!
Some things we are addressing as he starts his Special Ed Pre-K program on the 29th is obviously related to gross motor, and also language. He is not really "talking" although he has word approximations and signs. He is making great progress in this area too, but we would like him to be able to communicate (in any form he can) well enough that he does not become frustrated, and can get his needs and wants met. We have our IEP meeting next week and I will update you all on that.
Serena is amazing. She is extremely bright, loves to "read" (she memorizes books and pretends to read), loves to be the boss, and loves to cuddle. She really looks out for her brother and let's us know what he wants even when he can't ask for it. She anticipates his needs really well and it's so cute to see her advocate for him! She looooves Dora and recently got Dora underpants but has no desire to pee in the potty even though she wants to wear them! lol.
Her greatest obstacles include her significant asthma and reactive airway and her paralyzed vocal cord which affects the volume of her voice. She also has some issues with balance and gross motor coordination which will be addressed on her IEP as well. She is unable to walk up and down stairs without assistance, but she is getting much better with practice at home and at daycare.
Apparently at daycare Serena is not talking much. She is not using her words to request games or to interact with her peers. When she does talk her voice is so quiet most people can't understand her and she seems to get embarrassed or shy when she is asked to repeat herself. She talks really well at home with her brother or with her cousins, but that's with one or two other kids. We are thinking there is a sensory component to her not using her words at daycare where things are loud and distracting. This is something that will be reveiwed more once she begins school. Hopefully with prompting and building confidence she will begin to be as talkative in the school and daycare as she is at home.
There is a lot of fear for us as parents as the fall and winter approach. This year they will be exposed to germs at school and at daycare for the first time in their lives. Prior to this they were kept home and cared for by a nurse as they were still needing oxygen last year. This year they will be "out in public" and with all the news about swine flu and other illnesses, we are expecting a rough year, which unfortunately could very likely include more hospitalizations. The kid's pulmonologist told us to expect that Serena in particular is at risk for hospitalizations for respiratory illnesses for the next 2 years! It's extremely scary when she needs help to breathe and I am hoping it won't be too bad this year for either of them when it comes to illnessness. We will all be getting flu shots and hope this may help.
So theres a quick overview of S&E. We are so excited to see them growing and doing things we really couldn't be sure they would do. To us they are miracles, and we feel so fortunate to have them. They are extremely happy and know how much they are loved and these things are most important!!
***I copy and pasted this from facebook so I neglected to tell Bloggers that Serena was in the hospital a couple of weeks ago with RSV!!! Yes, she got RSV in August! Edwin got it as well and was quite sick, but we were able to keep him out of the hospital. Serena was in the hospital for 4 days and it took 2 1/2-3 weeks for both of them to completely recover. This recent hospitalization is what worries us about this coming cold and flu season!
Now some pictures:
July
August--Serena's hospitalization
Sept- Spencer Fair
