Friday, September 13, 2013

New Boston Brace

The last couple of weeks has been a whirlwind of going to storyland, back to school and getting the new brace. Big Sis had to start a new school because her old one closed after 48 years. It was very sad. I stayed up late the night before school to make Big Sis a new skirt which she immediately rejected in the morning in favor of a mismatched outfit. Both of them hammed it up for the camera before we left for the pedi and then school (poor Big Sis get swimmer's ear from swimming in the hotel pool at storyland).

Last Friday night E's brace broke. The rivet holding in the middle strap popped right out. I didn't feel like driving to the hospital twice in one week and we really didn't have any time anyway so E got a happy week off from her brace.

During the week Big Sis and I made an elephant for E. She has been dying to get one. I made one as a gift and two to auction off to support Project Mariposa which benefits children born with SMA. Poor E LOVED those elephants. Now she has one of her own.

After all of that we went to pick up her new brace today. It is very different from the first one. Today was the first time we had Rusty. He is really cool and I have to say all of the orthotists we've have been great. E's new brace is much more like a "grown up" Boston brace. It has a cut in to allow her to bend a bit easier. I love the little teddy bears on it. Poor E is very upset. She loved her week of freedom. She cried most of the ride home rather than take a nap.

Friday, August 30, 2013

What a difference a year makes!

It just hit me today on our way in to Children's that is a few days short of a year since our consult with the orthopedist. I was terrified and determined. Now a year later we have a 19 month old toddler with a straight spine going on her second brace. We got measured for the brace and they took half a mold because E wasn't cooperating for a full mold. Big Sis got her magic coloring book. She expects them since the 3rd cast when I forgot her activity bag and she got to discover the wonderland of the hospital gift shop. We also picked up a new dolphin balloon since we lost our balloon somehow last time and she was so upset. She ran around the hospital hitting not only us but strangers with it.

Our new bribery hospital food is mini marshmallows. I know, I know they are not healthy but when it comes to these kinds of situations the kids have the power for sure (kind of like how I will feed them anything they want to keep them quiet on an airplane). The marshmallows didn't get us through the mold. She was only able to achieve half of the mold since she started to fight once we turned her on her tummy. I picked out a teddy bear pattern for her though Big Sis was trying her best to convince me that E needed the skull and crossbones pirate pattern. :)

We pick up the brace in 2 weeks though the front desk trying to make me wait 24 days which I was emphatic was not acceptable. If these braces only last us 3 months before E can't even eat with it on and she's grown more than 2 inches then I refuse to wait more than 3 weeks for the brace. They said there were no appointments and I pointed out I waited 3 weeks for this appointment and if that is a problem they need to make the measurement and brace pick up appointments AT THE SAME time and not wait until we get measured. Sigh. My logical thinking is lost on most people/organizations I know. We will see if it is actually ready. Last time they called us the day before and asked us to come 3 days later. I could tell they were kind of pissed off at me but they charge over $2k for these things so tough! I can say that everyone who has worked directly with E has been great just their background stuff that I deal with that is frustrating.

Thursday, August 8, 2013

Almost time for a new Boston Brace

We've been having some troubles with E's brace causing some serious crankiness lately. She also seems so big all of a sudden and she can't wear it during dinner or she will hardly eat. I was finally motivated to call NOPCO on Sunday when I put E's brace on after dinner and then she promptly threw up all over me. I figure it was either that she ate something she is allergic to that we don't know about yet (entirely possible) or the brace smushed her tummy and I got the results. Turns out that NOPCO feels her brace is fine around her but they also noted how she looked much taller than last time. This has caused the brace to be a bit on the short side. We made an appointment for the end of the month to get new measurements. If you time it from measurement to measurement E lasted 4 months in this brace. It is much sooner than Dr. K had expected but it is in line with what other scoli parents have told me. We forgot the camera so no pictures this time. It is getting weird that we now have a routine set for our visits to children's including buying a balloon and getting some au bon pain for the road. That's all for now. I suppose we will check back in with the next visit.

Sunday, July 21, 2013

Boston Brace Check up

Friday was our much delayed brace check up. Normally E would have had it at 4 weeks in brace but that was the hellish week of 3 molars and a double ear infection so we had to wait. Of course it was the hottest day of summer so far so my plan of keeping big sis happy with the playground was a bust. We saw some people try to venture out to it but they left almost immediately. I hope the kids didn't melt their butts to the slide because our car said it was 102F when we pulled in to the hospital. We got someone new at the brace shop and they were VERY busy with a bunch of braces so it was a bit of a wait. I really feel for the teenage girls that were getting fitted for braces. The good news for E is that she won't remember having the brace and no one will pick on her for having it either. The straps were trimmed down and we were given new direction on how tight to make the brace. Apparently I haven't been cranking it down near enough. I thought I was making it tight but it really needed to be tighter. Also Dr. K had them add a pad to it for increased pressure on her ribs. They told us we should expect the brace to last "at least" 6 months which is very confusing to me since casts needed to be changed after 9 weeks and she is still growing. I guess if we suspect it not fitting anymore we will just have to speak up. We expect to get a new brace in the November/December timeframe. Oh and super awesome was that Dr. K wasn't only running on time but he was early! Very unexpected since we typically have had to wait a while past our appointment time but very welcome since by 3pm traffic out of town was already backing up.

Here's some pics of E in the brace shop.

Wednesday, July 17, 2013

wear and tear...

This is what E's brace is doing to my arm. The straps dig in while I am carrying her and the bottom catches me every now and then as well. We finally have our much delayed brace check this week so stay tuned.

Wednesday, July 10, 2013

In search of the right knit rite shirt for the Boston brace

I mentioned multiple times now the ridiculous shirt we were given for E to wear under her brace. I finally got the XS knit rite shirts today. NOPCO was supposed to call me when they came in but they failed to do so. This didn't shock me because communication between ortho and NOPCO has been an issue so why not forget to tell me when I can pick up my shirts! We went to Waltham instead of driving in to the main campus since that is closer, parking is free and it is generally less of a PIA. The woman at the desk handed me the shirts and I was like you have got to be KIDDING me. They are short sleeved with the world's most ridiculous turtle neck that folds over twice so it is 4 layers of fabric thick. I can't even begin to imagine why that would be needed for anything but especially not when it is 90F with 3000% humidity outside. They informed me that while knit rite makes tank tops with round necks in size small and up they DO NOT make them in XS. I also asked why they didn't carry XS normally and they said they almost never need them so small. I pointed out they had 3.5 weeks making E's brace where they could have ordered us the proper size since they KNEW she was tiny. I guess my facts and logic were lost of them. I took the shirts and we cut the turtle necks off. I am hoping they hold up in the wash now that I took scissors to them. Below you will see in the pictures the before cutting and after as well as a comparison to the original shirts we were told to make work. I am considering removing the sleeves as well. Most of E's summer clothes are tank tops so that just looks silly and she has to wear a top over the brace because the Velcro and buckles hurt my arms. I have bruise all down my right forearm from carrying her in the brace. This of course would not be a problem if your kid is old enough to walk everywhere (and you won't have the same knit rite shirt issues as well!). So if your kid is tiny I suggest you make sure they order the XS with the brace so they have everything ready at the same time. :)

Monday, June 24, 2013

Update on Life in a Boston Brace

E has been in her brace for a month now. I'm not going to lie. That first week was AWFUL. E cried inconsolably. It was almost as bad as the first day/night in the first cast when it wasn't trimmed properly. I thought she would never get used to it but I am glad to report that I was wrong. She is doing great and her physical therapy was dropped down to once a month! She finally seems all caught up on her gross motor skills.

We do have some lingering issues. You will see E in her knit rite shirt in a picture below. The brace shop only had size small and no smaller so it is more like an ankle length skin tight dress. All that extra fabric is HOT especially down that it is 90F out. Poor baby has overheated twice in the brace. The brace is light and most people don't even notice it under her clothes but for some reason I feel like she is more prone to overheating in the brace than she ever was in the cast. I also have included some brace pictures and E wearing her brace at the local town birthday parade this weekend.

E is wearing her brace 18-23 hours a day. We target 23 but we aren't perfect. Last night we had to leave it off because E isn't feeling so well. I think it is teething. From the screaming today I saw that three molars and two incisors are either bulging out or breaking through the gums all at once. This has led to a stream of snot like we have never seen from E before so much that she vomited. She's been miserable all day and big sis was really upset we had to miss our Monday hike. I rescheduled children's and the soonest they could get us in is 3 weeks from now! Ug. Poor kid. Let's hope she has a good night tonight.