...tomorrow I want to set up an appointment for us to tour Bennett Park Montessori, to get Eliot into the lottery system for the fall. School? Already?
I am not sure whether or not I'm using her condition as an excuse to be apprehensive about sending her off (everyone knows I'm a little nutty about sharing her), but it definitely has my mind going. It would be a whole new group of people, where I feel like we'd start from square one not knowing who we should tell, or to keep things more secretive, or just let it ride.
This is definitely where it comes in handy to have Dr. Mazur around...I'll be sure to pick his brain and get his thoughts.
It totally felt like the day would never come where I'd have to be thinking about school, and peers, but probably because I didn't realize that she could start school....actual school...when she is just three years old!
I feel bad that this blog is horribly updated, because when I started it, I thought I'd have tons to say and think about what she has going on, or that lots of new things would come up....but truth is, most of the time I don't even think about it. We are lucky that her health is seemingly otherwise perfect, because I've said before, most kids that have this going on have many other things going on as well. She does have tests for certain things that might arise, but as time goes on those tests are performed more infrequently.
We're also lucky in that, while she is not COMPLETELY over the top girly, she loves to wear dresses, and sparkly things, and tends to gravitate toward dolls and dress up. That's not to say, that once the dolls are dressed up, they don't become the victims of a ferocious dinosaur attack, or end up on a train ride....but at least they look good doing it.
I feel like she still seems pretty oblivious to gender, which I think is kinda awesome....but I also can't wait for her to be able to verbalize how she feels. Anyway, for a blog that gets updated twice a year, I apologize again for it being totally lame. But it's also pretty great that it's totally lame.
Oh yeah! She's totally potty trained! Second best day of my life!
Thank you so much for inviting me to this blog. It helps alot to know there are other parents out there who are going through the same thing. Up until 4 months ago ( when my Shawny was born) I had never heard of such a thing. Shawny was diagnosed because when he was born he spent 4 weeks in the nicu with an ALL the possible side effects you can get from Mosaic Turner ( hearing loss, enlarged heart, pulmonary hypertension, severe edema, platelet issues, blood count issues, etc.) All of his symptoms have gone away ( at least for now) but he is severely delayed and at almost 5 months old is just now starting to do things a "normal" newborn would be doing. We have therapists and a nurse coming in weekly to help with his delays. We have 7 other children who besides Asthma are happy, healthy children. I never dreamed that something like this could happen and what's worse is not being able to find any information on it either. Thank you for this blog and sharing your daughter's story with us all. Maybe in time more parents will be able to find others in the similar situation and be able to have comfort in knowing that.
ReplyDeleteSincerely,
Lisa
( Shawny's mom)
It's so hard not to know so much about this condition. My son is three years old bow but still at 14 months in his development. After I gave birth, he was diagnosed as Mosaic Turner. We always had problems feeding him, had surgeries every six months to correct the defects of his genitalia. The doctors told us that its okay to correct his defects now. But I'm terrified I believe my son has brain damage due to anesthesia. He started putting words together when he was 1 and 5 months but then It all stopped after his last surgery. He is three now and not saying anything. I am so overwhelmed with this. I am so guilty thinking that by allowing this surgeries I did more damage to my son. Thank you for this blog because I am comforted that I am not the only mom in the world that has a son with this condition.
ReplyDeleteI don't know anything about the effects of anesthesia on development, but I can tell you that my daughter also seemed to develop normal speech at just over a year, although it has been delayed, and that delay has become more pronounced as time has gone on. She's now just over 4, and will start preschool Monday, and will also start speech 2 times per week. It sucks, because she kept falling through the cracks to qualify for any services because she is very bright, and very physically capable, and with only one area of delay, they have to be SEVERELY delayed for services. I have to tell you, though, she has come leaps and bounds in just the last few months, and is awesomely funny, and that is enough for me. Sorry I rarely check this, but plan to update it soon. All I can say is to be his best advocate, but don't worry...it will come!
ReplyDelete