We were back in Brighton today to see Dr. Craig. Alison got her cast off. We had gotten some advice from someone with more experience in dealing with cast, so everyone kept commenting that they had never seen a cast like hers before.



The ankle looks just as swollen as it did two weeks ago and I was worried that he was going to put another cast on it, but he thought it looked ok. He was amused at the fact that she had figured out how to run in her cast by the time I picked her up after school the day after she got it. "Wow, that only took her about a day and a half," he said. Because of that, we were having some issues with the cast cutting into her pinky toe. It looks really bad, but they gave us some stuff to put on it and it should heal up all right. Now all we have to do is figure out how to keep a bandage on it.

Alison wouldn't walk normally for us after she got the cast off, so Dr. Craig thought she might need some help until she got her balance back. He had someone find a little walker for her to try out. Fortunately, it was too short for her, because the idea of letting her loose with a walker was not a pleasant one. She was upset that she didn't get to keep it though. He wants her to take it easy until she's stable on her feet again, but otherwise there's no restrictions. He wants to see her again in a month, to make sure everything is looking all right, so we'll be stopping off in Brighton on our way to Mom and Dad's for Thanksgiving. Fortunately, it's right on the way. :)

We were off to Urgent Care today. Alison was complaining about a bad sore throat and her ear hurting. The last time Alison had an ear infection, she only complained here and there about her ear feeling funny and never had a fever, so even though there was no fever today we decided no to take any chances and get it checked out. Her throat was pretty red, but didn't look infected and she had fluid in her ears, but they weren't red. Diagnosis? Sinus infection. So she's on amoxicillan for 10 days and should be feeling better soon.

Well, Alison's sprained ankle wasn't really a sprained ankle. Turns out it was actually a broken leg!

Alison saw Dr. Craig today. He didn't really look to closely at the x-rays that we brought with us because they were three weeks old at this point and he was a little concerned that Alison's ankle was still so swollen. He had us go over and get new x-rays taken to see what was going on. He showed us that there was an area of new bone growth on her fibula, just above her ankle. Great, just great. We've been letting her walk, run and jump around on a broken leg for three weeks!! Luckily, her brace has been helping keep things pretty stable, but Dr. Craig wants to give the ankle a little more support so Alison is now sporting a royal purple walking cast, which will go nicely with the royal purple queen costume she's wearing for Halloween. Fortunately, the cast comes off in two weeks.

Because we have this broken leg/swollen ankle issue to deal with, we didn't really get much of a chance to talk about Dr. Hurvitz's idea of doing a Botox injection in Alison's calf. That will have to wait until a later date.

Alison had a check-up with her pediatrician today. He said that she's doing well. She weighed 50.some pounds and was 47 inches tall. That was good to know, since that's what she weighed and how tall she was at Spina Bifida clinic last week . :) Dr. Mauch also took a look at the films of her ankle and said he thought they looked ok, too. He's a little concerned because her ankle is still rather swollen, but stopped short of having it x-rayed again because we're going to be seeing Dr. Craig next week and he'll make the final call on whether it's ok or not.

In addition to having her x-rays looked at again, I had two more things I wanted to talk about. I wanted to see if we can get Alison tested to get an official peanut allergy diagnosis, so we have a referral to an allergist. The other thing I wanted to talk about was getting a recommendation for a child psychologist, per the recommendation of the neuropsychologist we saw earlier this year. However, the doctor did not seem to feel that was necessary. I can't say that I agree with him and I'm a little annoyed that he brushed off my concerns, but I did not push the issue today because it was getting late and I wanted to get Alison to school as soon as possible so she wouldn't have to miss any more than necessary. So that's where we stand for today.

Alison had Spina Bifida clinic today. Overall, it was a good appointment. Dr. Hurvitz thinks Alison is doing great. He continues to be amazed at her function vs. her lesion level. We talked briefly about spinal cord tethering and how it will be interesting to whether or not it will be an issue for her as she continues to grow. Right now we base things on Dr. Tulipan's statement that all the kids are tethered and just keep an eye out for symptoms that would indicate surgery is necessary. So far, Alison isn't having any.

The main focus of the appointment was what we are going to do about Alison's foot. He is concerned about the fact that Alison has now sprained her ankle twice in the last year and a half. The muscle imbalance (her muscle that controls plantarflexion is hypertonic, her muscle that controls dorsiflexion is hypotonic) is causing her foot to drop and turn in. Dr. Craig had briefly mentioned a tendon transfer when we saw him April, but also said that he was hesitant to do it because he wasn't sure she had the muscle function to rehab the foot and he was concerned about leaving her worse off than she is now. What Dr. Hurvitz is proposing we do, and he will be discussing it with Dr. Craig both before and after our appointment with him in two weeks, is to do a Botox injection into the calf muscle to weaken it and see if there is any improvement in her foot. Even if there is only a 10-15% improvement, it would indicate a higher percentage of improvement is possible if we do the tendon transfer. The Botox treatment is only temporary -- it wears off after about 3 months -- so if it doesn't work, we haven't done anything that will permanently leave her with less function than she already has. It will be another few weeks before we know for sure, but if I were a betting person, I'd say Alison is probably going to have the Botox injection.

Alison spent most of last night in the emergency room.

Our anniversary was earlier this week, so the three of us went out to dinner last night to celebrate. Alison was filthy when she came home from school, crawling around in the dirt on the playground, I guess, so after we did her e-stim, she changed her clothes and got washed up and we went to eat. We got home in time for her to go outside and play for a little bit before getting ready for bed and Kevin went in to help her get changed back into her dirty clothes. He was putting her sock on when he noticed her ankle was hugely swollen and somewhat warm. Because she can't feel that foot, we didn't know what she did or when she did it and we had no way of knowing if it was something serious or not, so off to the ER we went.

It was a very busy night in the ER. We waited 2 hours in the waiting room before a room opened up for us. Then the room we got was the ENT room so it had an exam chair instead of a bed. We keep a couple of little pillows (that she was given after x-rays at U of M) and a small blanket in the car, so we had gotten them while we were still out in the waiting room with the futile hope that she might settle down and rest a little since it was past bedtime. She was exhausted by the time we got called back so we finally got her to curl up on the chair with her pillow, blanket and stuffed cat that she had just been given and within a few minutes she was sound asleep. It was almost an hour later before she was finally seen by a doctor, and she slept through his exam. She was rather dazed and confused about what was going on when we had to wake her up to load her into a wheelchair so she could go to x-ray. She did a great job in x-ray, despite wanting to roll over, curl up and go back to sleep when they needed her to lie flat.

Fortunately, we were on the fast track by that point. It didn't take very long after we got back before the doctor was showing me that it did not appear that her ankle was broken. He showed me the growth plates and how it might look like there was separation, but that it was within the normal range. If the radiologist looked at it today and felt that it did look like a fracture, they would call us. We didn't hear anything. Because she already wears a DAFO, he sent her home with an Ace wrap and we're supposed to have her wear it for 2-3 days and keep her off her feet as much as possible this weekend. The nurse going over her discharge instructions was a little confused that there was nothing about follow-up, but that's because she had plenty already scheduled. Alison will be seeing Dr. Hurvitz at Spina Bifida clinic on Thursday, seeing her ped for a well check the next Wednesday, and seeing Dr. Craig for an ortho follow up the Wednesday after that. Three appointments in three weeks. The ER doc sent us home with copies of the x-rays so we could take them to all of our appointments in case anyone wants to see them.

By the time we were finally ready to go, it was midnight. But since I knew we'd be going home when it was all over, instead of waitng forever and then being admitted, I didn't care that we were the for 3 1/2 hours. We all slept in this morning and Alison has been laid out in front of the tv for most of the day - Playhouse Disney all morning, Finding Nemo and Beauty and the Beast in the afternoon and now Snow White tonight. Tomorrow we're going to an apple orchard with our church group, so we're working on a way for her to enjoy herself and still keep off her foot as much as possible.

Alison finally had her appointment with Dr. Craig today. We were originally scheduled to go on March 12, but he had a lot of post-op patients to see that day and asked if we would be willing to postpone for a few weeks. It worked out well for us because this week is Spring Break and we didn't have anything else planned, so why not take a drive to Brighton. Today was another one of those appointments where we waited an hour to have a 10 minute appointment, but that's ok. Short appointments mean things are going well. Alison's twister cables broke about 6 weeks ago. Dr. Craig wanted to wait to have them replaced until he saw her because at her last appointment he had been contemplating not having her wear them anymore after she grew out of the current pair. I'm happy to say that we are now officially out of twister cables. Her foot turn in no longer seems to be coming out of the hip, but is instead mostly a foot problem. He mentioned the possibility of doing a tendon transfer at some point in the future, but he's on the fence about whether it will really help or not, so for now we'll just continue to keep an eye on things. He also took a look at her thumb and it's doing all right, so we won't be having another thumb surgery and she doesn't have to worry about wearing the splint anymore, either. So that was the gist of our appointment today and we'll go back again in August.

Alison's PT at school had done some tests prior to her IEP re-evaluation and felt that there was a possible problem with Alison's eyes, that they weren't working together. So we immediately go in touch with our eye doctor, who also happens to be one of Kevin's softball teammates and knows Alison's history, and he recommended getting her in for a full, dilated exam as soon as possible. Today was the day. Alison did pretty well with everything, even the drops to dilate her eyes. She wasn't quite so cooperative when it came to reading the eye chart, because we all know she can see better than what she was letting on. I explained what the PT's concerns had been and the Dr.'s assistant did all the same test that the PT had done. Dr. Bell came in took a quick look at her, did a quick test and told me he could see why the PT had thought there was a problem with her eyes but that they were actually fine. The bridge of Alison's nose is a little wider than normal, so it makes her eyes look off center. Dr. Bell called it pseudo-Strabismus. He did all the rest of the regular tests and confirmed that she can see better than what she was letting on, but is slightly near-sighted and has some astigmatism, though not enough to need correcting at this point. He wants to see her back in a year and a half or two years, unless there is another problem between now and then, and at that time she'll probably be needing glasses. Well, we knew that was coming....Kevin and I both wear glasses and in two years Alison will be just between the age I was when I got my first pair and Kevin was when he got his.

We had quite the eventful evening. Alison got to go to the ER tonight. We needed to rule out a broken ankle. Even though we are very vigilant about her wearing her brace unless she is sleeping, swimming or in the bathtub, we were shocked to see that her ankle was quite swollen when we took her brace off before her bath tonight. Alison had been at a birthday party this afternoon where they had a bounce house, and she spent most of her time jumping around in it. She came out at one point and said her left foot hurt, but went right back in and kept jumping. So I thought nothing of it. Until tonight. And off we went to the ER.

The good news? The ankle was not broken. The bad news? It is sprained.

The good news? We had our first trip to the ER that didn't end in an overnight hospital stay. The bad news? We now have to figure out how to keep Alison off her foot as much as possbile for the next week or so. That's not going to be fun and it's going to require a lot of tv and movies.

Alison had another appointment with Dr. Craig today. The in-and-out appointment we had last time did prove to be just a fluke, and we were there today for well over an hour, most of that time just waiting and waiting and waiting -- the actual time with Dr. Craig being about 10 minutes. We had an unexpected set of hip x-rays done today, which was probably a good thing since she hasn't had her hips x-rayed in a couple of year, so that added to the wait time. When Dr. Craig came in I told him I hoped that her hips were fine because I was really not prepared to deal with bad hip news. And as luck would have it, her hips look great! We even have pictures. :) We were prepared to hear that there might be some foot surgery in our future, since we had some concerns about Alison's right foot, but he said he thought it looked fine. He also said it looked to him that she wasn't intoeing as much as she used to. That was funny to us because when we watch her walk it seems that it's still the same, if not getting worse. At any rate, she'll still be wearing her twisters for the forseeable future and he thought her SMO might be getting a little short, so we have an order for a new one. So now we need to decide whether or not to try and get it taken care of before the end of the year, since our deductible has been met, or wait and let it be applied to next year's deductible. Ah the joys of dealing with insurance companies. Still, it was a good appointment and since there were no big concerns at this point, we don't have to go back until the end of March.

Alison saw Dr. Hurvitz today. As usual, he was very thrilled with her progress and thinks she is doing great. He had a new resident with him, so he was quizzing him on her actual function versus her lesion level. We revisited the idea of TES therapy, which he still agrees could be beneficial for her, and we will be talking to Alison's PT to see how we can get that set up. So since Alison is continuing to do so well, we won't have to be back until February.

Alison had another follow-up appointment with Dr. Craig today. We were in and out and had our next appointment scheduled before her appointment was actually supposed to start -- that's a first!! We can usually plan on at least a half an hour wait. Anyway, Alison's thumb is healing nicely. She's got one little stitch that we need to try and clip, if she'll let us, but the incision is looking good. If we can get her to go without a band-aid a little bit, that will help, too. She's down to wearing her splint just at night, now, and will be able to give it up completely in about a month. So we're done with orthopedics until November, when Dr. Craig will take a look at thumb and legs again.

Today was Alison's follow-up appointment with Dr. Craig and she got her cast off (thank goodnes!). Despite having had "casts" -- the molds for her braces -- taken off before, she was not to thrilled with the saw. She wasn't cut or anything, but I think Dr. Craig got a little too deep at one point and buzzed her hand because she did scream and start crying. She was also quite upset when she saw the stitches on her thumb, but she calmed down as soon as she got a band-aid put on it. She has a bright blue neoprene splint that she's supposed to wear for most of the day today and then we're supposed to start leaving it off for longer and longer periods of time over the next few days until we have her wearing it only at night. We go back to have Dr. Craig check everything out again in two weeks.

Alison partied a little too hard at Uncle Paul and Aunt Coleen's wedding reception, and we just got home, this morning, from spending a day and a half in the hospital. Somewhere along the line she picked up a bug of some sort and we ended up in the ER Sunday night because she hadn't been able to keep anything down all day Sunday. She got some meds to stop throwing up and an IV to rehydrate and now she's back to her regular self. So much for staying out of the hospital this year....

Today was Alison's appointment with her orthopedic surgeon. Overall, it was a good appointment. There were no surprises, and that's always a good thing. Her intoeing is getting a little bit better. Even though it's only been about 6 months since the last time her twisters were lengthened and despite her orthotist getting them about an inch longer than she needed at the time, she's grown quite a bit recently and the twisters are too short again. So back to the orthotist we go. Hopefully they've got their ordering system figured out now and it won't take 8 weeks to get her new ones. Dr. Craig noted that she seemed to be overpowering the twisters a little bit -- probably due to needing an adjustment since she recently had new shoes put on them -- and told us that a lot of times twisters will start to lose their effectiveness by the time a child is 5 or 6 because the child's muscles do start to overpower them. So we may be nearing the end of wearing twisters whether the intoeing is corrected or not....time will tell, I guess.

Dr. Craig also took a look at Alison's thumb. And, as we were expecting, he recommended doing a tendon release on it. It's a fairly routine, outpatient procedure. When it's all done, she'll have to wear a little cast for about two weeks and then a splint at night for a couple of weeks and that should be the end of it. We don't have a surgery date scheduled yet, but it will probably be some time in June. It's not bothering her, but we'd rather just get it done and over with and not have to worry about it anymore.

Today was also Alison's annual IEP review. It was pretty straightforward, since the only thing it deals with is her physical therapy. She will continue to receive the same amount of physical therapy services as she has for the last year....once a week for 30-45 minutes. She has exhibited mastery of all but one gross motor skill through age 2 1/2 -- she cannot walk on her toes -- and scattered skills in the 2 1/2 to 4 age range. Most of the skills that she is having trouble with are balance related -- standing on one foot, hopping on one foot, standing in "1st position," stuff like that -- so we will be focusing our efforts on strengthening her leg muscles and improving her balance.

Even though we know that Alison is able to do so much more than she should be able to do, and even though we know that she is still not a typical child, it's still somewhat depressing to see how hard she has worked and how hard she tries and she is still lagging behind. But we'll keep working!

Alison went in to see the pediatrician this morning. We recently noticed that she could not fully extend her left thumb. Being horrified at the possibility that she broke it or something and we didn't even notice, we felt the need to get it looked at. The good news? Her thumb does not appear to have been injured. The bad news? It looks like the tendon in her thumb is being obstructed. In other words, she's got "trigger" thumb. And the treatment for it is surgery to release the tendon. The ped wants to see her again in a few weeks to see if it gets any better on it's own. If it doesn't, then he wants us to have her orthopedic surgeon look at it when we see him in April. Can you believe that of all the things she could need to have surgery for she's going to need it for something totally unrelated to Spina Bifida?

Alison had spina bifida clinic today. It was a rather unremarkable appointment, and we like them that way. Her doctor continues to be thrilled with her progress. A recent discussion on our e-mail list prompted us to ask some questions about TES therapy and if the doctor felt it might be of any benefit to Alison. He was very open to the idea of trying it, so much so that he was ready to write us a script for it today if we wanted it. There are no guarantees that it will do anything at all, and we definitely don't want to exacerbate her intoeing, so we're not going to rush into it at the moment. We're going to take some time to talk to Alison's pt about it and see what she thinks, as well as see if they do it at the hospital or anyplace else around here.

While checking out the valve of her shunt, the doctor did make an interesting comment. He said that he wondered, based on her function level, if her shunt was even still working/doing anything. That's the first time we've ever had anyone say anything about a correlation between function level and whether or not there is a pressure problem. Even if the shunt is not actually doing anything, it wouldn't be taken out. We know from Dr. Barr that they've found that taking them out disrupts whatever "fix" the body has come up with and they end up needing to put a new shunt in, so whether it's doing anything or not doesn't change the fact that she will have it forever.

All in all, it was a very satisfactory appointment.

Alison had a couple of routine urology appointments today, an abdominal ultrasound and a cystometrogram (CMG). Since we were really early for our appointment, I had gone ahead and taken her to the bathroom, only to come back and find they were already ready for us. Her ultrasound showed that her kidneys and bladder look fine and we were able to see that her bladder was empty. So now we know that she does completely empty when she goes to the bathroom. That's good news...less risk of UTIs that way.

After lunch was the CMG (which checks the capacity, sensation, pressure and uninhibited contractions of the bladder). Because she's not cathed, I was a little worried about this test because they do have to insert a catheter. She was a real trooper, though, and barely even flinched when it was being inserted. Thank goodness for Blue's Clues! Her bladder pressures remained low for the whole test, which is good, and she had a normal bladder capacity for a 3 year old, which is also good.

Because she's potty trained now and because her test results have remained consistent over the last 3 years, we're at a point where we could consider not having any more regular urology appointments. However, because urological changes can be a first symptom of spinal cord tethering, and because tethering could become an issue as Alison grows, we all agreed to have the tests repeated again in two years.

Alison has "graduated" from and AFO to an SMO. She got her new brace this morning. Her old AFO was just a plain opaque plastic but the SMO is really cute, with flowers all over it. It's been a little bit of adjustment, as the new brace is a little bulkier than the old one. While we can cram her foot into the shoes she already has, I think we're going to go shoe shopping and look for some wide width shoes to make things a little easier. If we can't find anything we like, we'll settle for some longer shoe laces for the current shoes.

So far, she seems to be doing ok in the SMO. There was some concern that the weight of the brace would make her foot drop worse, but that doesn't seem to be happening. But then again, we're trying to strengthen those muscles, so that little extra weight may work to her advantage in the long run. Her physical therapist thougth she was doing ok with it. We'll see what her orthopedic surgeon thinks when we see him in a couple of weeks.