Alison had her PT evaluation with Early On today. She had a great time and didn't want to leave when the evaluation was over! They have a lot of fun toys there.

From what the physical therapist said today, it sounds like Alison is going to qualify for services, at least for a short time, which is fine. Dr. Craig's order for PT was only for 2 months anyway. She does have some gross motor delays, which we knew already, but they are not serious delays, all things considered. The therapist was very impressed with how well Alison is already doing without having had any PT. Energetic and motivated were a few words she used to describe her. That was her nice way of saying she's into everything and only wants to do what she wants to do. :)

The next step is to have an IEP meeting, which will happen in a couple of weeks. At that time we'll come up with a plan of how to proceed.

Alison had her follow-up with the orthopedic surgeon today. We didn't really get any news that we weren't expecting. He's pleased with the way the brace is helping her foot drop. He wants her wearing it most of the time, but not until we get it adjusted so that she has full range of motion as far as flexing and pointing her toes. Right now there's a stop on the back that prevents her from fully "pointing" her toes.

As far as her intoeing, the brace alone is not correcting it at all (like that was a big surprise, since everything I read says bracing doesn't help it). He feels that the muscle that pulls her foot in has more tone than the one that should be pulling it out. So we now have a couple of options to consider, We can add twister cables (cables that attach to a pelvic band and her shoe) to the brace or we could have her SB doc give her a shot of Botox in the inner muscle and see if relaxing it will allow the foot to straighten up. We can do one or the other or both. We're leaning more towards just doing the twister cables. Also, we have finally gotten orders for PT. He wants her to see someone 1-2 times a week for 2 months (and have us work with her at home) for gait training. So, as soon we figure out if we want to go through the hospital, Early On, or a private practice, we'll get that started.

Alison got her brace this morning. So far, so good, I guess. It doesn't do anything for her as far as her intoeing goes (in fact I think it makes it worse) but it does help her pick her toes up when she walks, so that's good. She needs some knee socks and a new pair of tennis shoes (we had to rip the insole out of the one she has now to make room for the brace), but that shouldn't be a big deal.

Alison did real well the brace, but she really didn't like it. She cooperated fairly well when it was being fit and adjusted. I explained to her that it was going to be kind of like wearing a boot and she seemed to understand. I also kept repeating that it was her brace, so she'd know what it was. She only wore it for about an hour and a half this morning. When she was on the potty after lunch she started whining "Bracelet off. Bracelet off, " and trying to undo the velcro. I hope that longer sock will make things a little more comfortable for her and that it doesn't become a battle royale to get her to wear this thing. The good news is, it hasn't slowed her down in the least.

Alison was casted for her brace this morning. I am so very thankful that she is such a happy, social little girl. It makes having to do stuff like this so much easier. Amazingly, she actually stayed in the waiting area and played with the toys they had while I filled out her paperwork. Normally she would be running all over the place like a wild hooligan. She even played nicely in the cast room while the orthotist rounded up all the supplies we needed. She sat quietly in my lap, eating grapes while he got her all set up and started wrapping on the plaster and she was really interested in the plaster once he got high enough on her leg for her to reach it. I had to keep pulling her hand back to keep her from actually getting her fingers in it. She sat patiently while the plaster set and we were able to get a really good cast. Apparently, a lot of times, the littler kids get really squirmy and the casts don't come out so good and it makes it hard to make the brace correctly. The only time we had any trouble was when it came time to take the cast off. Alison was less than thrilled with the saw, the noise really scared her, but she toughed it out and did a great job. It'll take about 3 weeks for the brace to be ready.

Alison will be getting a brace (an articulating AFO) for her right foot. Kevin talked to Dr. Hurvitz about it on Monday and Dr. Craig called us about it today. In light of the conversation Kevin had with Dr. Hurvitz, the conversation I had with Dr. Craig was pretty amusing. Dr. Hurvitz said that he and Dr. Craig had gone back and forth about whether or not to go ahead with the brace and he finally agreed to it (when he saw her in September, Dr Hurvitz had been inclined not to do anything about her foot unless it became a problem as she got older). Dr. Craig implied that it was Dr. Hurvitz who wanted to brace her. At any rate, Dr. Craig's office will be sending us the order so that we can have the casting and stuff done here instead of dragging Alison back to Ann Arbor or Brighton any more than we have to. We will have an appointment with Dr. Craig at the Brighton office after Alison gets her brace but at least it's one less trip. It does not sound like Alison will have to wear the brace all the time, only for an hour a day, at least to start.

Alison finally had her appointment with the orthopedic surgeon today. As usual, it was one of those good news/not-so-good news kind of appointments. She had baseline x-rays of her hips taken and the good news is that they look perfect. Then Dr. Craig had her walk around a little bit and examined her legs. He confirmed that her in-toeing is probably a result of muscle weakness, because she doesn't appear to have any more tibia torsion in her right leg than in her left leg. That is good news, too, because it means she won't need surgery. However, because she also doesn't flex her right foot as well as she does her left foot, he thinks she needs a brace, an AFO. This was disappointing for us because, even though we go to these appointments expecting to get the news that she'll be braced, both of her SB doctors have said they didn't think she needed it. But before we move ahead with getting a brace, Dr. Craig wants to talk to Dr. Hurvitz and make sure we're all on the same page. It should be interesting to see what the end recommendation is, because Dr. Hurvitz did say he never braces for in-toeing. In the meantime, Dr. Craig did give us some ideas of things we could work on with Alison to try and help strengthen her leg muscles, such as having her kick a ball to a target and pedaling a tricyle (which means mommy and daddy need to go shopping :). We should be hearing something from either Dr. Hurvitz or Dr. Craig (or both, who knows) in the next week or so.

Alison had her first appointment with her new doctor at clinic. Dr. Hurvitz seems very nice and he had been working with Dr. Barr for almost 10 years when Dr. Barr retired, so that was reassuring. We spent a good 20 minutes chatting with the resident who is just starting his rotation with Dr. Hurvitz (Dr. Possner, I believe his name was) so that he could take Alison's medical history and check out some things. About the only thing we had any real concerns about was her right foot in-toeing, so he spent a bit of time checking out her legs.

When Dr. Hurvitz came in, Alison was running around in the exam room, more specifically she was running around the dividing curtain that she had pulled out. She thought it was great fun. Dr. asked us what her level was and when I told him L2, I thought his eyes were going to pop out of his head. He really was stunned. He told Dr. Possner that an L2 should not be running around like that. By the end of the appointment he said if he gave L2, hydrocephalus and shunt as a diagnosis, among other to choose from, when referring to Alison, he felt sure not one person would choose it.

Dr. Hurvitz also spent a good bit of time checking out Alison's legs. He thinks that some of the in-toeing is probably due to muscle weakness, but that there might also be some tibial torsion involved as well. So we now have a referral to an orthopedic surgeon. Hopefully in the next couple of months we'll have some idea of what the plan is. We'll go back to see Dr. Hurvitz again in February.

Alison had spina bifida clinic Monday morning. Overall, it was a very good appointment. Dr. Barr had her walking up and down the hall so he could see how she moves. When she's not wearing her shoes, she in-toes quite a bit. When she wears her shoes, her left foot is perfectly fine and her right foot is fine about 50% of the time. So for right now we're just going to have her wear her shoes more around the house and keep an eye on it. She also has a little bit of loose outer rotation in her hips (when he manipulates her legs), but it's not affecting her walking and her legs are perfectly straight when she stands, so Dr. Barr is of the opinion that we should leave it alone for now because treating it would mean braces and he doesn't want to do anything to inhibit her movement. Her back is fine (there had been some concern from her ped at her last check up). We also found that the reason she doesn't stand without holding on to something is because of the mild Chiari malformation. She will eventually stand without holding on, but it will take her longer because her hindbrain (cerebellum) is slightly deformed. Doctor Barr felt the fact that she can move pretty fast and turn on a dime is more important than whether or not she can stand alone at this point. So, aside from the fact that this will be the last time she will be seeing Dr. Barr, because he is retiring at the end of June, we came away with a good report.

Monday was also Alison's last visit to the motor development lab for the Dept. of Kinesiology's study on how walking develops in babies with spina bifida. She did really well and had a lot of fun. She didn't have to walk on the treadmill this time, just down the special mat a bunch of times. They had to set up some "roadblocks" along the side of the mat to keep her on it because on her first trip down she took about 5 steps before veering off to one side of the mat and staying there until she got about 4 feet from the end of it, where she then crossed over the mat and continued on the other side. Once that was taken care of, she did great. We were a little worried that she get halfway down and turn around and go back to where she started from or start walking in circles, because that was what she did at her clinic appointment when the doctor wanted her to walk back up the hall so he could get a look at her from the front, but she went straight down just about every time. All throughout her participation in the study they have been making a memory book for her, including height and weight charts, pictures, and little synopses of what she did at each particular visit. Yesterday they finished it off with a little "diploma," which was signed on the back by everyone that works on the study. It was very interesting to have been a part of this research program.

Alison had her 18 month checkup yesterday. For the most part, things are great. She's weighing in at 23 lbs 5 oz, which puts her in the 45 percentile. She's now a whopping 32 inches tall, in the 50 percentile (but her legs are still too short for most of her pants!!), and her head circumference is holding steady at 18 3/4, unchanged for the last 9 months (yay!), so it's now in the 90 percentile. The doctor was very impressed with her vocabulary. He said he could tell we read to her.

As seems to be the case with just about every checkup, there is good and there is bad. This time, at least, we were aware of the "bad" ahead of time. We noticed the other night that Alison seems kind of "crooked" when she walks. It's not real noticeable when she has her clothes on, but when she's in just a diaper you can see that her spine kind of curves a little bit. For once, the doctor didn't get all freaked out and start ordering x-rays and things like that. He thinks it's probably something that can be handled with PT/OT, but is comfortable waiting to see what her Dr. Barr thinks when he sees her next month. He's planning to call him and give him a heads up, though. He checked her out thoroughly and said her legs and hips/pelvis look to be good and straight and we've all come to the conclusion that her right foot turns in because of muscle weakness in her ankle and not because she's bowlegged.

We're to keep her on Pulmicort twice a day until the middle of April and then drop her back to once a day for a week and then stop it completely and see how it goes from there. Hopefully everything will be fine and we'll be done with that for good.

After waiting around all morning for the doctor to come and see Alison, Kevin sent me home for a while and the doctor came right about the same time I got to the house. (It figures!) Anyway, the word is that she will be discharged this evening, around 5 or 6. She still has to get one more round of IV antibiotics and one more breathing treatment. She'll continue with her original (oral) antibiotic until Tuesday. They are also giving us a nebulizer to keep up with her breathing treatments at home. She was given the ok to travel, so we will be leaving to go back to my parents' tomorrow after lunch so that we can attend Gramp's memorial service on Saturday.

Alison is in the hospital. She went in yesterday, directly from her doctor's appointment to follow up on her trip to the ER on Saturday. She has pneumonia. She's now pretty well re-hydrated, a lot more alert when she's awake, and is even eating a little bit. We had hoped that she would be released by tomorrow, but that doesn't look likely at this point, although her breathing treatments are now every 4 hours instead of 6 which may help to break things up a little faster. They had to turn her oxygen up last night, but were able to turn it back down a little this morning and her oxygen levels stayed pretty much the same, so hopefully we'll be able to keep weaning her off the oxygen as the day progresses. We're also hopeful that, as long as she keeps drinking fluids, we'll be able to get rid of the IV soon, too.

Alison's renal unltrasound went well. Her kidneys look fine and her bladder is still slightly thickened but is unchanged from last year. The pressure test went really well. She definitely knows when she needs to go. They will see us again in 2 years,unless there are complications.

We saw Dr. Mauch today. Everything is fine. Alison's head measurement is now between the 90-95 percentile. We go down to Ann Arbor on December 1, for Alison's urology test. More to come.

We went down to Ann Arbor to see Dr. Barr today. He was pleased with the progress that Alison is making. He called Alison a very motived child and is expecting her to walk by herself within the next 2-3 months. He examined Alison hips and found them to be fine. :)

Alison's hips are fine!! We got the call this afternoon, in what has got to be the fastest turnaround time for test results we've ever seen. So it looks like she can go on being a relatively normal kid! :)

Alison had her 12 month well baby check-up this morning. For the most part, everything is looking good. She weighs 22 lbs, 14 oz., is 29 1/4 inches, and her head circumference is 18 3/4, unchanged from last time!!!! She didn't have to get any shots today because we are delaying the MMR until she's older and are probably never going to have her get the chicken pox vaccine. However, in our never ending saga of getting one thing straightened out (her hydrocephalus in this case) only to have another thing pop up, her doctor thought he felt some clicking in her right hip. It could be nothing or it could be hip dysplasia, in which case we would be referred to and orthopedist and she would probably have to be in a splint for several months (the alternative being a very pronounced limp as she gets older). We're taking her to have her hips x-rayed tomorrow and are really, REALLY hoping it's nothing. We might have the results by Friday, but it will more likely be the beginning of next week.

We saw Dr. Schell today. Everything is fine with Alison's shunt. Her ventricles are smaller now than when she was born. He doesn't anticipate any problems and doesn't expect to see us until at least next year. If we feel comfortable with having Dr. Mauch and Dr. Barr keep tabs on her, we won't necessarily even have to bring her back in then.

We went down to Ann Arbor today to see Dr. Barr for Alison's 9 month checkup at SB clinic. Everything went extremely well. Alison's muscle tone is doing great and the shunt is working the way it is supposed to. Dr. Barr did notice that Alison's right foot was rolling slightly to her instep. He is not to worried about it at this time, but did give us advice on getting her shoes with good arch support to help with the rolling.

We went down to Ann Arbor today to see Dr. Barr for Alison's 9 month checkup at SB clinic. Everything went extremely well. Alison's muscle tone is doing great and the shunt is working the way it is supposed to. Dr. Barr did notice that Alison's right foot was rolling slightly to her instep. He is not to worried about it at this time, but did give us advice on getting her shoes with good arch support to help with the rolling.

Alison had her follow-up CT-scan today. Even though the scan only took 2 minutes, we had to sedate her because there was no way she would hold still for that long. She did great...slept through the whole thing, even when we had to rearrange her because the lead apron she was laying on was up too high. Kevin was able to watch over the tech's shoulder (while I was in with Alison) and he said that, to him, everything looked good. Her ventricles are still larger than normal, which is to be expected, but are much smaller than they were before and the brain matter around the ventricles is substantially larger than it was before. We'll know exactly how things stand once her surgeon looks at the films and we have a chance to meet with him, but things are looking pretty good.