Monday, April 19, 2010

easter and evaluations.

i've been putting off this entry for far too long. i still don't really wanna update (because i'm lazy), but i'm afraid if i wait too long, i won't remember anything that has happened in the past month.

i guess i'll start with justin's 6 month IFSP update through early intervention (that was four months late). after months of not hearing anything through early intervention and not getting proper paperwork in a timely manner, i finally called our service coordinator. we were able to throw together a last minute meeting without all of justin's therapists (he sees PT, OT, and a nurse). i was SO excited for his meeting because i was so excited for everyone to see the great strides and improvements justin had made during the past "6" (really 9) months.

so, the day of the evaluation, we had his PT, the nurse, his coordinator and the supervisor come. things got started okay, but they ended with me in tears. i know that justin has obstacles and i know that there are things he needs to make progress with, but i guess when you sit down and have a whole list of "issues" given to you, it's a little harder to deal with. i can't say that i have a problem with his PT, but i can't say that i don't either. i don't know what it is, but it started from our first encounter. the night before i was to return to work from my maternity leave, she called our house at 9pm, asking if she could come the next day for justin's first visit. i asked if she could come earlier than 10a, and she simply said, "no." she would not budge, but luckily, work was understanding and i was able to go in late that day. many times, during PT, i catch her watching TV more than she is working with justin. so, we turn the tv off to fix that problem. then, of course, she's late to EVERY SINGLE APPOINTMENT. other than last week, i truly cannot recall one appointment that she's been on time. luckily, at this point in time, i'm not working, but how frustrating is that?! it ruins your whole day if you have plans. i rush home from morning events to be there on time for her, and she's always late. i get along with her great, but these few things really bother me. also, throughout the 9 months he's had PT, she's made comments here and there about things. the day he turned 8 months, she said, "is he 8 months yet?" i said, "yes, today." she said, "oh, well he should be crawling by now. we gotta do something!" .....hello? what have you been doing for the past 7 months? that comment stands out the most, but like i said, little comments here and there. she's done great in teaching us how to work with him at home, but she can just be so frustrating!

well, anyway, the day of his meeting, she had a buttload of things she wanted to address. i'm really bitter about it, not because i don't think she's looking out for him, but because these things were not what she had discussed with me before. i felt totally blindsided! and i know each week she might have a suggestion of things to work on and after 8 months of weekly visits, they add up... but, it was unreal! and they were things she had never brought to my attention before his meeting. i got upset at the meeting. i was furious with her, but after i had time to think and get over it, i know she's doing what's best for justin if it means to bombard him with extra therapies (after this meeting, his OT was increased to weekly from biweekly, and they're bringing in a teacher after his birthday), while he's young. and regardless of the suggestions, i wouldn't want to hear my kid needs additional therapies from anyone, not even my own mother. no one wants to hear negative things about their children, period.

for a week or two after that, i was really depressed. i felt like she had called him stupid, because she made the comment that he doesn't "play" like a "normal" 10 month old.. yeah, my dramatic interpretation, but i can't help it. i also was upset that she had brought up secondary scoliosis. she had asked if the doctors ever mentioned it at clinic and the only comments we ever heard were that there were no signs of it. but she had mentioned that she thinks he has early signs of secondary scoliosis. she never told me her thoughts prior to the appointment, so it came as a big shock. but then i got upset because i didn't know exactly how it differs from "primary" scoliosis. so, of course, my next question was what is she seeing that the doctors aren't seeing? and that's scary! i know she's with him weekly, so she sees him more than they do, but it's really awful to have to think your doctors are missing something of that nature.

after the appointment, she had texted me to see if i was okay. she felt really bad about the fact that i'd gotten so upset, but i trust her.. and i know she's just doing what's best for justin... even if i wasn't expecting the more negative comments that day.

i agonized a lot over what justin's not doing compared to other babies his age. i worried about what chelsy's baby was doing. i worried about what liam was doing. i worried about everything i couldn't control. i worried about everything that didn't matter. justin isn't like them. i can't focus on what he's not accomplishing. i need to focus on what he is able to do. and, it's amazing what he's overcome. this kid is a fighter. he may never be a walker. he may never do a lot of things, but he will always fight. i am so proud of what he can do, and i get so excited when people ask me how he's doing.. it's the best feeling in the world to brag about him.

the meeting only made me work even harder with him (which i didn't think was possible!), but already we're seeing improvements with him. his PT was here on thursday and she was really impressed with him. she told us to keep up the good work.. that's nice to hear, but part of me wonders if it's genuine, because i'll always have the episode at the meeting in the back of my head... but, like i said, i can't worry about that stuff. he's doing awesome. what made me feel even better about it, is friday, his OT was here, and she was amazed at what he was doing. he is sitting up straighter, more erect... he would always "fold" over when he'd sit up on his own, so we're working hard on those lower back muscles for him to stay up longer, by himself... and it's paying off. his weight bearing is getting better. he is doing much better too with transitioning between sitting, sidelying, and moving onto his stomach. he's pivoting on his belly from point to point.. he's been doing this for a few months, but he's getting pretty quick with it the last few days. he's rolling consecutively in all directions. he's able to catch himself when he starts to lose his balance while sitting. he's playing better - he's been putting balls in one bucket and into another. he's been playing more unassisted with his toys. he's playing peek-a-boo! and this is the best part.... he did an army crawl while the OT was here!! i can't even believe it happened, so i was SO happy that she was there to see it too. despite my two week mourning period, i'm so proud of him. every day is something new.

pictures of him playing peek-a-boo!
easter morning!

madi and i have been visiting preschools for about a month now.. it was really hard to pick one! we finally settled on one that's fairly cheap and close to home. it sounds like they have a lot to offer, and i was impressed during our visit. she will be enrolled for 3 days, one of which is what they call an "enrichment day," and luckily, we were able to sit in on one of those classes too. madi got to help with making their rainbow salad. she was really excited about it and didn't want to leave, but she didn't want to leave any of them while we were there. there was one that was not even questionable, we just knew it wasn't the one for us. but the others were tough! two were ruled out by distance, but of course, they were the cheapest.. i just would've made up the difference with gas money, so i'm glad i did the research, cos they were all really nice schools. i just can't believe my baby's gonna start school in the fall. she's been asking to go to school since she could talk and has really brought it up a lot lately, even moreso since we started visiting.. she gets so jealous when uncle comes home with his bookbag and homework. i think she'll really enjoy it. and she definitely needs to be around kids her own age more often. she also needs to practice with sharing! she does well with it, but she's not as consistent as i'd like... she's just way too spoiled!

i can't believe in a month justin will be one.. we're planning a big party.. and i cannot wait to celebrate this baby's first year of life!

last week, gram, justin, and i went to visit an amish woman that has a daughter with spina bifida. she's 8, and walks unassisted. it was SO nice to meet the woman and she invited us back to meet her daughter sometime.. so maybe when school's out we'll get a chance to visit. it was awesome, and i can't wait to do it again. we could only stay for an hour cos justin had OT, but i felt like we could've talked to her for hours.

annddd, zac and i will be attending a rehab conference in two weeks. it's a full day of speakers dealing with spinal cord rehabilitation, movement therapy, and more.. it will even hit some financing areas, such as wills, trusts and changes for funding with certain medical issues in the next few years. i'm looking forward to it.

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