this is impressive... two blogs in one month! first time in a long time.
i thought i'd update since we had spina bifida clinic at chop last week. things were good, things were bad.
our day started off with a visit to SB clinic. we first met with dr. hachen. she seemed to be pretty happy with him, but did not fail to mention that he's "too heavy," and it could be a problem if he's ever able to walk. i know. i get it. i think they seem to forget that he was almost 10 pounds at birth. but, she suggested we give a call to the nutritionist we saw a few months ago. i haven't done it yet, because i'm a slacker, but i will. i also asked her if he might get fitted for afo's. she wasn't sure, but said it would be up to the PT. so, enter PT. "no, no braces." i guess you could see the gloom in my face when she said that. so, she asked why i think he is ready for braces. i reminded her that at the last clinic, she said they wanted him to "transition from laying to sitting and transition from sitting to laying." he did that within 3 days of his last visit. also, j is working on pulling up onto his knees. both jen and cheri (PT and OT that see him weekly) think he's ready for them. and they wouldn't set him back at this point, so i don't understand why they won't go ahead and at least give me the script. so, of course, she wants to try to get him to pull up onto a chair. HELLO?! by this point, it was almost 1p, he hadn't had a nap at this point and it wasn't really working out for him to do what she wanted him to do. not to mention the chair was much higher than what we practice with here at home. so, of course, she still says no. so then i said that our PT has emailed her to discuss justin's case so they can compare notes and make sure they're working on the same goals. she swears she never got the email, but she is sure to always respond to phone calls and emails any other time. did not help the case, at all. i was steaming by this point. so, finally, we agree that she will give me the script. she and cheri can discuss their thoughts, and cheri will tell me whether or not they feel i should go ahead and get the braces. the PT there even tried to talk me out of it, complaining about the cost of them and some other crap i didn't wanna hear.
so, we head to neurosurgery for a check up.. first one in a long time. we met with the nurse practitioner there and she thought he looked great. we went over his health history since his last visits with neuro. she said she was going to check with dr. sutton to see when we needed to return. we were previously told every 6 months, she suggested every 3 months. when she returned with dr. sutton, he decided that because justin has been doing so well, has great head control, and no shunt issues, we can be discharged!! i wasn't expecting that at all, but i'll take it! of course, we will still call them in the event of an emergency or shunt issue. but, wow. it is such a great feeling to know that is one doctor less to visit with during our trips to chop/spina bifida clinic!
after our visit with neuro, we head back to clinic to meet with dr. davidson (ortho) and jeanne (sb coordinator). we wait. we wait. we wait. finally, dr. davidson comes in, complains about a trip down to the nicu. he asks if i have any concerns/questions. i thought maybe he'd back me up about the bracing thing, cos he and the PT both said at our last visit, "he should be ready by next clinic." do you think he'd back me up? no.
he checks justin out, defends his reasoning for why he does not need them. as he's doing his dictation, someone stops in with the script for the braces. i had attempted to tell him about the "deal" we made earlier with the PT in regards to taking the script home and waiting to act on the bracing process, but he cut me off. when they handed the script to me, he ripped it out of my hands and says, "I thought you said they weren't going to do braces?!" i attempted again to explain to him the agreement from earlier, and he simply says, "no. he's not ready for them. next clinic he will be."
i was FURIOUS when i left there. and of course, i'm a sensitive soul, so when zac asked me about it, i burst into tears! i don't even think it was about the fact that they wouldn't give him the braces. i understand medically why they won't. but i was so disrespected. i'm so tired of being told, "next clinic he will be ready." this is the 3rd or 4th time they've said that to us. each time, they give us a goal for him to reach, and he does it within days.... why do they keep putting it off?! i wouldn't care if they gave us a list of 30 things for him to accomplish, just stop getting my hopes up saying, "next time," and then not following through!
so, with that being said, friday, we had a visit from our AWESOME EI nurse, kim. i explained the situation to her, and zac and i had agreed after his SB clinic, that we should get a second opinion from AI Dupont. we set up the appointment that day. so, we head there in two weeks for a consultation with rehab medicine. i'm so excited. at worst, they can say, "yeah, we don't feel he's ready either." then i can at least stop fighting for it (for now). but, i'm hoping they see all of justin's hard work and they agree he should be rewarded with braces!
also, for those of you who still follow the blog, i forgot to mention in my last post, that we thought justin had a seizure last month! i wasn't home, but zac said that he stared, shook (like a chill, not a convulsion), and stared again. the whole "seizure" lasted about 15-20 seconds, he said. so, we called neuro and told them, they suggested we check in with his pediatrician since he doesn't see a neurologist. the peds decided since he was fine before and after that i didn't need to bring him in, just watch him and get a call in to set up an appointment with neurology. LUCKILY, chop just opened a specialty health care center a week or so before that, so we were able to get in two days later! usually, they said, it takes about a year to get an appointment with neurology. SO LUCKY. we met with the neurologist and she felt that he had what they call a "shutter spell." it's common in a lot of kids, not just kids with special needs, she said. but, because of his health history, she suggested we do an EEG. we were able to do it that day while we were there, and she read the results right away too. they came back NORMAL!! zac and i were so happy!
so, it's been hectic, but it's been an exciting summer. madi starts PRESCHOOL in two weeks. PRESCHOOL, people! my baby's growing up! she's so excited though. we are having her birthday party a week early this year, so the family can mourn the loss of stevie on the one year anniversary of his death without any interruptions. all in all, it will be a great day to celebrate madi and on her actual birthday, we're going to do something fun with her, then have grandparents over for dinner or something.