Progress!

We thought that E's back looked significantly better after the first cast was removed and we got confirmation with her pre-cast x-ray (one that I wanted to skip but they insisted they needed it). Both were seated x-rays so we can compare one to one. In August her COBB angle was 47* and after one Mehta cast which was applied in late October her angle is now 26*!!!! Amazing progress. They think she may only need 1 or 2 more casts past this one. We are so very lucky because there are families out there that have been casting for years.

The casting went much better this time. It was still too long when she came out to recovery so it needed to be trimmed. I was so very worried because they left me in the waiting room so long. It turned out they decided to petal the cast without me there which I would have prefered to be with my baby as soon as possible. It also resulted in me having to re-petal the cast back at the hotel room because there are areas that won't rub on E but most definitely will hurt me while I am feeding or carrying her (the edges are sharp!). My only other concern is that I have been very clear that I want her reproductive organs covered during x-rays and they forgot to cover her in the post cast x-ray. I think it is ridiculous I even need to ask. This should be STANDARD procedure and not something I need to worry over. I am concerned over her future ability to have children as well as her current spinal issues.

Our flights home packed us in like sardines. There wasn't a spare seat to be had on any of them so it is is a good thing I didn't miss them! Now I think I am getting sick. The travel was exhausting and we are considering getting our casts locally. I am not happy with the way we were treated here but it is expensive, time consuming, and exhausting to travel for casts and when I think about it I wasn't listened to very well anyway (i.e. the x-ray without coverage). The doctor I liked best was at Shriners but it was hard to get on their schedule and that would require quite a bit of travel as well. He was the one that took the time to actually talk to me and address my concerns best of all.

Life out of the cast

I have been bad at posting because things were hectic. The local doctor was less than please that we started casting and didn't use his wait and see plan. I said my piece which was that two other doctors agreed that her scoliosis is progressive. We got the cast off and they even gave it to us to take home. I need to take some pictures. The first day was a little rough because E wasn't sure what to do out of the cast. She is very strong in some ways because of the cast but we think she got lazy in other ways. For instance it would seem she enjoyed resting on her cast while she was sitting. She did not revert back to crawling during this break. Not sure if this is normal. Her skin looked amazingly clear. The one tip I would give parents is not to dress their kids in any black for cast removal. Her skin was all flaky and all over her black pants.

I need to post pictures but I can say E's back is amazing. You can't see the hump through her clothes anymore. E's pedi even noted how much better it has gotten. She was amazed by the progress. This just goes to show early intervention is the key!

Other than that the week has been a whirlwind of school, moms group party, gymnastics, swimming, and pre op check up. Today we have a light day of going to claytime to get Big Sis's christmas gifts for the grandparents.

I am nervous because snow and rain is on the forecast for both days flying. Also strep and all kinds of nice things are going around at school. A fever would mean a canceled surgery.

I have a lot to consider. After this cast we may switch to Boston. It would save time, money and sanity. I just have to consider whether I trust them.

Countdown!

In less than 24 hours E will have her first cast removed. We can't wait. The first order of business when we get home is a bath. Poor E hasn't had a real bath since October 22nd. She seems desperate to get some interaction with water that she will go out of her way to put her hands in my glasses of water if she can get in range. I am nervous that they will remove it and her back will look the same as it did before. I know it shouldn't and that we should see some improvement but I guess we can't be immune to irrational worry.

5 week update

We finally made a whole week without an exploding diaper getting onto the cast. We changed the tape anyway since the area around the neck was coming off and rubbing which wasn't so great. That area hadn't been changed in a very long time since we did our best to remove as little tape as possible during the blowouts. We had some close calls on our long Thanksgiving drive but the pantyliner saved us. I recommend a combination of pantyliners and cloth diapers. The disposables were very long in the back so it was hard to get a pantyliner up high enough. We are using grovia cloth diapers which are hybrids so if you are squeamish about cloth this is a good compromise because you get the benefit of the covers with elastic in the back and less explosions with the convenience of throwing out liners. I personally don't mind washing the cloth inserts but it is easier when you are on the road to use the disposable inserts.

There are two weeks left until cast removal. I am nervous and excited at the same time. I want to see how much correction this cast gave us. I am a bit worried that they will take it off and her back will pop right back into the same curved shape with the rib hump.

I am not sure if other parents are out there reading this but E's abs are getting ridiculous. At first I was worried but then I realized the indent in her belly is her developing a six pack. I didn't expect this but I guess it is logical since she is doing crunches all day.

Thursday Thankfuls

Today I am thankful for Dr. Min Mehta and her work to cure progressive infantile scoliosis. I am also thankful for the infantile scoliosis outreach program and the founder Heather. She has given me advice and has talked me off the ledge. She is a mom who has fought in the trenches and she is determined to help others.

Push ups

She did it! She was on her tummy and managed to push up to sitting in the cast! She did look quite angry with me for not having helped her but she did it and here's to hoping that she will regain all the milestones she had before the cast.

Halfway there!

We are officially over the hump. There is less time left ahead of us in this cast than behind. That is great since we've had 5 diaper explosions and 2 minor incidents. I realized we have two problems. Pooing in the carseat and then there is the issue with leaning over. She can't bend the top half of her body so to get something off the floor she only bends from the hip. This causes a plumbers crack situation. Things seem to be better in the cloth diapers but the plumbers crack situation may lead to ruin. I've taken a pantyliner and placed it inside of the cast to avoid this issue. I am sure we will get the hang of this just in time for her to no longer need casts.

In other news, my order from http://www.tapebrothers.com/ has arrived! Please see below. I had fun picking out the duct tape patterns which will hopefully last us until the end of casting. We've already gone through a whole roll of the pink paisley and some of the thinner decorative rolls. To highlight the need for duct taping the cast I've included a picture of the cupcake bandit. She was aided by her sister the ring leader of the cupcake caper. While I was dealing with big Sis's stolen cupcake E was in the the kitchen and very motivated. I didn't realize the cupcakes were on the floor but E did and made her way over to the container and dove in. Without duct tape around the opening E would have gotten chocolate all over the top of the cast and that would have been a disaster for us!

Going back to cloth

The third in cast week and now we've had two exploding diaper accidents. Both were car related yet again. I am over disposable diapers. We had this problem with big sis and we switched to cloth and the problem was gone. The only issue was that our current stash has some problems with wicking which is just annoying when you have to change baby pants but urine wicked onto a cast could be catastrophic. I sent big sis's old diapers out to be refurbished and I just got them back last night. We can finally cloth diaper again and I really, really hope this will be the end of our troubles. UG. Time to go take all the tape off again and get my soap and wash her shirt out again.

In other news... E is still working on scooting on her butt but she's still not crawling in the cast. We're not sure if she will crawl at all in the cast. She also hasn't been able to pull up. Overall her disposition has been great. If I were in that cast I would be very much less than happy or nice.

E had her delayed 9 month appointment this week. We've been at the pediatrician quite a bit lately since big sis has a toe that looks like it might fall off (due to her insistance to wear formal shoes all of the time) and E had that high fever in smack in the middle of the hurricane. Anyway... she is 1.75 inches taller than we measured at Cincy on cast morning. I wonder how much of that is from stretching and whether she's had a growth spurt in the two weeks since the cast.

Here are some pictures from the first cast. First we have E's last bath at home. She looks so happy splashing in the water. Then she is all ready in her little hospital gown and finally is a picture taken when I was brought back to recovery. My poor baby was so distraught.

another disaster!

We need our cloth diapers to come back already because these disposables are terrible. This time the blowout occurred in the car at a seriously inopportune time. We had just finished up at the bosto.n science museum. E had a brand new diaper we get out of the parking garage and onto the road and it hits. We had to find a semi-legal place to pull over and change her while people walking along the sidewalk stared at us. Daddy also made a rookie mistake which caused the blowout to be much worse than it need to be. My technique for diaper change when I know there is a poo in it is to put E on her side so as not to squish her bottom or the back of the diaper at all. Then I put my hand in the cast and pull the diaper down from there making sure E doesn't wiggle to touch exposed and unclean areas to the cast. Then wipe, wipe, and more wipes.

At home it took a full hour to take the tape off, clean the shirt off, blow it dry and retape. A small pointer is that I find using some diluted dawn dish detergent seems to work best for cleaning the poo off the under shirt. I had this impression that once you taped up the cast that was the way it remained. I thought I had to commit to one kind of duct tape pattern. That is pretty funny since I've taped E's cast 4 times now in just under 2 weeks (2 times in the first two days because I had taped her cast before I realized that it was trimmed wrong and then I needed to retape it). we survived but it wasn't fun.

Dressing while in Mehta cast

I didn't have much of an idea what to expect before the cast. It made packing difficult. What I suggest to any parents out there still waiting for casting is to size up on the tops and not even bother bring the current sized tops even if they seem a bit big. The cast will be larger than you expect even with researching and looking at videos or pictures. We know E's cast weighs 2 lbs and 3 oz. Her weight a few days before the cast was 18 lbs 1 oz and she weighed in at the pedi this week at 20 lbs 4 oz. I did not purchase any fleece tops because the cast itself is quite warm and I did not want to overheat E so we stuck to cotton shirts. For her winter coat I actually needed to go up 2 sizes. So in pre-cast size she took 12 month clothes but post casting she wears 18 month with a 24 month jacket. We have to roll sleeves up quite a bit or her little hands would be lost.

Since people seem to be finding this post through searches I wanted to add an update. If you have a strapless cast I suggest using a onesie underneath. You can get the tank top style to cut down on how warm it is but when there are no straps the shirt gets all stuck up inside of the cast. Having the undershirt helps keep it out. Also if food or liquid gets splashed you have another layer of protection. I didn't have luck with the cast that had straps because the straps were so high up and it was hard to wear onesies. Others may find a different arrangement is better.

Also remember to bring smaller clothes to the hospital for cast removal or your baby will look like a deflated balloon :)

didn't last a week

I had hoped to make it further without a cast incident but today the dreaded diaper blowout happened. We've been super vigilant with watching signs of pooping but this one happened in the car seat. We promised big sis a trip up to San.ta's Village in the white mountains. I am probably overcompensating but big sis has been acting out lately especially since I went away and left her with Daddy and Grandpa. We had a wonderful weekend with gorgeous weather that didn't even require a jacket. On the way home the incident occurred and I did the best I could in a parking lot. At home we had to remove her tape and wash the shirt. Then I had to go through the process of petaling and retaping the cast. Not fun at all. If this happens often I'm not sure how I will handle it. The good news is that we survived the blowout. The cast was salvaged and we go on.

Now we are busy doing the wash and getting last minute showers before Sandy gets here to ruin Halloween. We are hoping to have power but expecting to lose it.

The cast is on

I can't lie. The last week was awful. It was probably harder since I was doing it all alone in a hotel so no one else could take over for me. Our flight was delayed on the way in which fouled up E's last bath. We didn't get much sleep but I probably wouldn't have anyway. The hospital was bright and cheery and very efficient. She was in and out in less than an hour which actually went by quickly. When I got to recovery she was screaming. Poor E is usually a calm baby and doesn't cry much. The rest of the day was rough. E was either sleeping or screaming at me. It became obvious one of the issues was the trimming of the cast. This was a lesson learned. I was so upset and distracted by how upset E was after her cast that I neglected to go through the whole checklist of what I needed to know and look at before I left the hospital. I took her back in and they trimmed the top and bottom so that she could sit up (before that when I tried to make her sit the bottom dug into her thigh and the top pushed her head back). Once it was trimmed things started to get better. Next time I will know what to check and I won't leave the hospital until the cast is right.

It has been sad to watch E struggle. She is learning to sit, scoot and crawl again. She has't attempted crawling yet and sitting can be hard. She loses her balance and falls over and gets so angry. The big news is today she managed to scoot around on the kitchen floor and get into things she wasn't supposed to. That made me so happy to see and now I know that life will return to some semblance of normal with time.

Now for the stats... E's curve was 47* in August. We didn't get a before xray so we aren't sure what we were at on casting day but it was most likely worse (it looked worse through our pictures at least). The good news is that in her cast they achieved complete correction. Her spine is straight!!!!!

The next cast is in December. I still don't have the exact date but it should be early in the month.

4 more baths

There are only 4 more evening baths before E's cast. After that there will be 7 weeks with no bath. I'm trying to prepare for our trip. I have a few bibs to try out that are more waterproof than our current batch of bibs. I bought new tops in a size larger that I hope will fit once the cast is on. Just to complicate things E has a cold. I am hoping last night was the worst of it. We need to keep her in a bubble until Tuesday.

One week to go

I haven't had my act together on this so I had to buy E's cast duct tape at T.arget rather than ordering the pattern of my choice online. She is either getting cupcakes or pink paisley (for those not in the know duct tape is used to waterproof casts). I know it isn't very halloweeny but I hope for it to be cute at least. I am so sad that our cuddles will be impeded by a cast. DH and I are fighting to get cuddle time in while we still can. Our other issue is that E is finally starting to get teeth. She is a snot covered drooling mess. I am hoping these teeth hurry up so that we don't end up canceled. I can't even imagine flying all the way to Cincy and then not getting the cast. We also have Grandpa flying up from Arkansas to watch big sis. It is all very complicated.

two weeks

In less than two weeks my baby will be in her first cast (barring any issues with colds or fevers). I alternate between acceptance and freaking out over everything. It is made so much harder by the fact that I will be alone. It is hard to not start to resent this but the situation is that DH took a new job and only has 2 days off saved up at this point. That won't even cover one trip. On top of that trying to find a hotel at a decent price but apparently as explained by the nice woman at hotel reservations the combo of the campaign and the possibility of their baseball team getting into the world series is driving prices up and availability down. Ug. This makes me dislike politics and baseball even more than I do if that is possible. At this point I only have our flights lined up. Maybe that makes it seem a little less real.

I suppose the first cast will be the hardest. I have no idea how I am going to keep it clean for 7 weeks. It makes me sad that now that E is starting to love splashing in the bath we will have to switch to sponge baths which I am certain she will hate. She has started crawling a bit and I wonder how the cast will impact that progress. We will learn soon enough. It is weird because it feels like it has been so long since E's diagnosis in August and yet it feels like time is so close.

This post is brought to you by the number 26

We had our appointment today. I got the feeling that they had already decided our treatment course from the pictures and medical records I provided in advance. It was Dr. S's opinion that we are in the 10% of the infantile scoliosis patients that does not just get better on its own (something I was already convinced of but still a tiny bit of me was hoping to hear otherwise). They also were not so concerned about whether her xray was seated or laying down like our previous appointment. The doctor here said he would speak with the one in Boston to help us with some follow ups and cast removals because traveling is hard. It was exhausting getting here on my own but in truth I really wasn't on my own since many strangers were so wonderful and offered to help when ever I struggled. It was wonderful to experience such generosity and it restored some of my faith in humanity. The nurse was very kind. She told me they have 25 families currently in treatment with Mehta casting so that makes us #26. We are on the schedule for the end of October. Everyone says the first cast is the hardest. It is made more complicated because of my latex sensitivity. Tomorrow it is time to return home and start planning our next trip down for the cast. Next week we go for one more opinion which is a back up in case of insurance issues. *fingers crossed that insurance will approve the casting*

T is for Travel

It turns out that I am simply unwilling to ac cept just one opinion. For full disclosure we struggled a long time to have our family and had to turn to specialists so I learned the hard way that I shouldn't just trust one person's opinion. I have to admit that I haven't been sleeping much because I am up worried about logistics. The first is that I've never traveled alone with a baby. Alone yes... but only when my task was to just get myself from place to place and even then I wasn't always very successful. Now I have to bring Baby E with all of her stuff! Not only that be to do it two weeks in a row to get two other opinions. The other source of stress is that I don't like leaving Big Sis behind. All of the plane tickets are booked so now I just have to line up hotels and rental cars. I have to say that these children's hospitals have been wonderful. They are very nice over the phone and so willing to help traveling families. I will post again once we have our appointment in Cincinnati.

W is for waiting

We had our appointment with Children's and we were directed to wait until December to get a new xray. We also found out that our initial xray wasn't valid because it was taken in the seated position. It should have been taken with her lying down. This means we have no idea what her Cobb angle is at this point. Waiting is frustrating but waiting and not knowing puts us back at square one.

S is for Specialists

I have two appointments set up. One is in Boston and one in NYC. Yesterday I took the time to get Ellie's records together. This waiting is terrible. I think knowing will be better than all of this waiting and reading. If it is just infantile scoliosis (ha! just infantile scoliosis something I didn't think I would HOPE for a week ago) then I am worrying unnecessarily here. We will go to Children's next week for our consult. I just want to say that I am grateful that we have always lived in areas of the country where we have access to top notch hospitals. Without Weill-Cornell we would not have our daughters and now we have access to Children's in Boston. It is our small silver lining.

C is also for Crooked

I am not the best speller and I have to admit scoliosis always throws me for a loop. When I was in high school I didn't want to get the yearly scoliosis screening because I was embarrassed that I didn't have nice bras. I lived with my Dad and I couldn't explain to him why I didn't want screening and we had a huge fight about it because he refused to write me the excuse note. Turned out it was because he didn't want to look dumb since he couldn't spell scoliosis. I haven't thought much about it in a long time. We go on with life and screenings end with high school. I went out into the world and got my degrees and met my husband. We had our girls (Big Sis and Baby E) both healthy, smart and happy children.

Last week my husband asked me to take Baby E to the doctor. He had noticed a lump on her back that was getting worse. Since he gave the baths he got to see her bare back more often. I was very busy with her projectile vomiting and acid reflux that I noticed the slouchiness but attributed it to the need for more core strength. I called our pedi and they assured me that any issues the big S would be "extremely rare" but I could come in anyway.

An xray sealed the deal. Our baby's back is shaped in an unnatural C curve. At less than 7 months old, she has scoliosis.

I thought I had a handle on things. I know all of the infertility lingo but now I am in the world of infantile scoliosis and on the learning curve for sure. Baby E has a Cobb angle of 47 degrees and we are awaiting an appointment with a spine specialist at Children's hospital. I have started this blog to document our journey because C is for both cookie and Baby E's spine.