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.

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.

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.

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.

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.

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. :)

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.

Life in the brace

It has taken almost a week for things to normalize with the brace but E no longer runs away as soon as she sees it and she doesn't cry when she hears the word brace anymore so that's progress. Yesterday while we were taking a break from it both girls were trying to put the brace on their stuffed animals so that they can have straight spines as well. I am not sure what I expected but I don't think it was to the transition to the brace to be so hard. There was a lot of screaming and crying. I dare say more than we've had since the first cast disaster where I am pretty sure the cast tech forgot to trim the bottom and the neck entirely and we were sent home that way. The only way to get through to the other side on this one is to just knuckle under and keep going. It felt awful to see the big fat tears and listen to the screams but now she accepts the brace and we are past it.

One thing I am completely lost on is how to change a diaper without taking off the brace. I will take some pictures of the brace to illustrate. I just do not have that kind of skill. It comes down much lower than any of our casts have and I see no way to get that sucker on and off especially if there is a poo involved.

It did not help that we got the brace the day before our big move. We had the pleasure of moving in the pouring rain and I am not sure when this new house will be unpacked but my guess is half past never. It's been a week since we've had a usable kitchen table for one thing. Daddy can't find any of his pjs. I had to venture into the attic (after Daddy tried) to find E's summer clothes since we went from 50F on Saturday to 92F on Thursday. Everything is just a hectic hot mess.

I will leave you with pics from our d.isney trip.

Raising Money for ISOP

I finished a new quilt to raise money for ISOP. Heather (the fairy godmother to all infantile scoli families) said all money collected this year will go to training in proper casting technique! This is VERY important. At the least it improves quality of life and saves lives without invasive and painful surgeries. I've had this fabric a while and I love how the quilt came out. E loves the quilt so much I think she is trying to keep it. I am so happy to be able to use my skills to raise money for such an important cause.

E gets her brace on Thursday. Apparently it is taking longer than they expected to make it so now we are taking her into children's the day before our move. I am not sure how everything is going to come together for this move but I suppose we will figure it out as we go. I am so much less organized than last time and I am sure it will be down to the wire.

Big News Around Here

I've been quiet because we were off at Disney with the girls celebrating E's straight back! I will post more about that another time when I can get all the pictures together but the real big news here is that E is starting to walk. I finally got a picture today. She is so proud of herself and I am happy that she might finally stop ruining her shoes and pants with that butt scoot.

Excellent News!

Presenting the very first image of E's STRAIGHT spine.




In just 6 months and 4 casts. We are amazingly lucky. E didn't cry during her cast removal this time. Perhaps she knew it was her last? :) We have some technical difficulties getting the xray but the person who measured E for her brace was totally awesome and great with kids. We go back in 3 weeks to pick up the brace and learn about the feeding and care of a B.oston Brace :) It can't possibly be as hard as a plaster cast right?

E is with her PT right now. She will take steps for her which goes to show the kid is totally playing me with this little I'm helpless and sad routine she is throws at me when I try to get her to walk or stand without holding on.

Falling Down

We must be on some sort of one family mission to keep the B.oston area orthopedists in business. A year and a half ago I broke my foot while pregnant with E and then last spring our au pair broke her ankle skydiving. This was followed by E's infantile scoliosis diagnosis and now I fell down the stairs at a fellow Mom's house and heard a pop in my foot. The convenient part is that we still have our au pair's old crutches but I am not sure how I am going to deal with getting two girls to all their appointments this week while being down by one working foot. I have an appointment tomorrow to have it looked out. I am leaning toward thinking it is a sprain but that distinct pop sound was pretty disturbing. Perhaps it is all just a convenient excuse not to clean like I needed to this evening.

We have a bidder!

If you haven't headed over to the quilt auction please check it out. Just click on the link below. We have one bidder on the quilt and a few days left to go. I am also taking requests to make more quilts with the proceeds going to ISOP.


Quilt Auction for ISOP


Things seem to be better with E's digestive issues since I gave up peanut butter. Of course now that I know I can't have any it makes it all the more enticing but I wouldn't do anything that will hurt her so I just dream of chocolate and peanut butter crepes. The other silliness is that I put away E's second Epipen and it is in such a safe place that I can't remember where I put it. I'm reading a book about peanut allergies that the allergist gave me and it is scary. It is a whole new world for us because we've never had to worry about what we were eating before beyond a simple concern that we've eaten too much take out or candy etc.

We are counting down to the removal of this cast which is good because it has gotten very snug around her hips. We will get an xray this time around and find out what the course of treatment will be going forward. I originally thought we'd be done with casts but after the last cast the rib hump was still there so I am not so sure our cast days are behind us. That's ok though because it is a regular part of our lives now. Those first couple of weeks in the first cast I never could imagine how ordinary the cast could be for us. It was a struggle in the beginning and now we don't even notice. Fingers crossed for some good news this week!

Quilt Auction

I have the quilt I made up on ebay. All proceeds will go directly to the Infantile Scoliosis Outreach Program. Please check it out!

http://www.ebay.com/itm/Quilt-Sheep-Baby-size-36-x-38-/251266390282?#ht_442wt_121

Scoliosis with a side of allergies

Poor E has terrible luck. I am glad I stuck to my guns about the allergy testing because no one thought it was necessary. They felt she had an allergy to antibiotics end of story. Friday I finally got the results from the testing we had done with her cast and she has a "slight" peanut allergy. We saw the allergist today and discussed some of her symptoms most especially the GI ones that have cleared up since I've given up peanut butter sandwiches. She thinks it still may be a false positive but now we need to carry an epi pen just in case. I suppose it is good to have just in case. At least we soon will be rid of the plaster cast for the summer. I am increasingly nervous about the upcoming xray.

Jinxed it!

Just today I was thinking how EASY this cast has been. You all know what had to happen because I had the audacity to think such things... VOMIT. E woke up from her nap so Big Sis and I went up to get her. We went in for a little round of bouncing in the crib which E was loving. When we finished she still seemed fine then she looked over at me and vomited everywhere with no warning. This meant that it got in the front of her cast through her shirt and her onesie. I had to take the tape off to get to the moleskin which smelled of vomit. This task took a while because B.oston puts the moleskin on top of the shirt and it is a serious PIA to get it off. I re-petaled and the re-taping took some time because she was quite upset with the all the messing with her cast. This time we did funny food tape. I have to say that I like the 3.M brand tape much better than the duck brand. It is less gooey and easier to cut without gummy up your scissors. I will have to pay attention in the future. The last tape we used was the gooey variety and it was vexing.

The girls hamming it up for the camera pre-vomit fest


New moleskin and tape:

Quilt Auction and general update

I've been quiet since we are all taking turns being sick in this house. I am really hoping that now that the weather is turning and all of the snow is finally melted that we may improve. We have also been busy looking for a new house to rent that is closer to Daddy's work. We found on which makes me very happy because it is old (1800) but completely renovated. No more carpets! I totally hate carpets. I feel like I can never get them clean. Also Daddy can have a real office so that when he works from home he doesn't have to sit on the floor in one of the bedrooms. He will have to share with me because I am over sewing in an unfinished basement. Sewing with frozen fingers is no fun especially to the tune of the washer and dryer which are next to my sewing table. For illnesses we had Big Sis get a cold that turned into an ear infection and once that was under control E got the cold followed closely by the ear infection and then I got the cold so our house is a chorus of whine.

In other news I've finally completed the quilt I intend to auction off for the Infantile Scoliosis Outreach Program. Heather at ISOP was my lifeline when we discovered E's condition. She helped talk me off the ledge after our first cast fiasco (aka one of the longest nights of my life). She works worldwide to save the lives of children with infantile scoliosis most recently bringing a doctor from South America to Cincy for training. A link will follow once we get it up on ebay. I am setting bidding for the cost of materials only. Anything above and beyond that is much appreciated.

Here's a preview: