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.

We just got home about 45 minutes ago. We weren't expecting to be home until tomorrow, but everything went very well. We got to the hospital at 4:30 yesterday morning, leaving the staff plenty of time to put her in a gown, weigh her, and put her bracelets on and giving us plenty of time to sit around and wait. Alison's surgery was scheduled for 7:00, but they didn't take her back until around 7:15. At that point, it was off to the waiting room for us. Dr. Schell came to tell us that she was in Recovery and tell us how the surgery went at about 8:15. We got to see her shortly after 8:30. She was screaming her head off, not so much from pain, although that was part of it, but from disorientation while waking up from the anesthesia. She was able to eat by 9:30, and did pretty well. Then the waiting began, because she was to go from Recovery to Neurosurgery ICU, and there were no beds available in NICU. I stayed with her for a while and Kevin got something to eat, then he stayed with her so I could get something to eat. The hospital she was in does not have a Pediatric unit anymore, so they had to do some searching to find her a crib, not that she wanted to be laid down once they finally did find it. She slept for the majority of the day, and was in a fairly good mood when she was awake, once we got her Tylenol dosage figured out, and once we were given the ok to give her Motrin, things were even better. She finally got a room at 8:00 last night, almost 12 hours after her surgery was finished. One gentleman complained about the fact that he had been waiting to be moved from recovery for 2 hours and the nurses' aide politely pointed out the fact that "that little baby over there has been waiting for a bed since I got here this morning." He didn't say another word about his wait. We were able to get her down for the night by around 11:30, giving me the chance to get a few hours of sleep before she started getting restless. I finally resorted to holding her for the rest of the night so we could both get some much needed rest. Her leads kept coming off and setting off her alarms, which kept waking her up. Dr. Schell came to see us this morning and, since she was eating well, had her pain controlled by Tylenol/Motrin, was not running a fever, and was acting normal, told us she could go home today after one more round of antibiotics if we were comfortable with that. Otherwise we could have waited until tomorrow. She got her IV out after lunch. Because she inherited her mother's terrible veins, they had had to put it in her head, above her left ear, and they used enough tape to secure Texas, so getting it all off was pretty traumatic because there was hair involved. Once that was done and her dressings were changed, we were set all set to go, as soon as our ride (Kevin) arrived. So we're home now, and she's doing great. She goes back to see the doctor next week for a check-up and to get her staples out.

Alison had her appointment at the Spina Bifida Clinic on Monday. We've got some good news, some not so good news, and some fun news.

First the good news. During the course of the exam, Dr. Barr did a lot of work with Alison's legs, feeling the various muscles and how they were working, and he said we're looking at function being farther down then originally thought, probably S1 possibly S2, and she will definitely be a walker. He also now thinks that she probably won't need physical therapy or need to have any leg braces, or might just need to have something to stabilize her right foot.

Now the not so good news. Alison definitely needs a shunt. The surgery is scheduled for March 18. It's a very short procedure (should only take 15-20 minutes) and she should only be in the hospital for 2-3 days. Hopefully she will be one of the lucky ones who never has a problem with her shunt.

And finally, the fun news. Alison is now part of a study on how leg control develops in babies born with Spina Bifida. Basically, she gets reflectors put on her hips, knees, ankles, and feet and she gets held up and "walked" across a tabletop and then held over a baby sized, waterproof (because she does all this naked) treadmill and encouraged to "walk." It was very interesting to see. She did a lot of stepping, and did her best stepping at the second highest speed of the treadmill. We'll be going back again in June.

We had an appointment with Dr. Barr today. Everything is ok. He looked at Alison's MRI and her ventricles are bigger, but they are proportional to the CT scan. We just need to keep on an eye on her head size. Everyone have a wonderful New Year.

Alison had a visit with her pedatrician for a check-up and to get shots. Dr. Mauch was real happy with her growth and weight gain. Alison is now in the 10th percentile for each category. The only problem was the growth of her head. According to the charts, her head measurement puts her in the 95th percentile. That is kind of big for her age. Hopefully the head growth will level off.

We called Dr. Schell's office to find out why we had not heard anything about Alison's MRI. Dr. Schell will not be back in the office until Thursday, 12/19/02, so we won't know the whole story about the MRI until he returns. However, we were told that if there had been anything to worry about, we would have been called immediately, so it appears that Alison's MRI turned out ok.

Alison had her baseline urological tests at U of M today. Her bladder is slightly thickened, but other than that she passed all the tests with flying colors. She was seriously pissed during the VCUG, but who wouldn't be when you're not quite 4 months old and are strapped to a rotating board with your hands strapped back by your ears? Kevin could hear her screaming clear across the hall. We do not have to go back for a whole year unless complications arise before then. Yahoo!!

Alison had an MRI done today. We had it done in Saginaw, and she had to be sedated for it, so she needed to not sleep on the way to the hospital. Keeping a tired infant from falling asleep during a 30 minute car ride is no easy task. She went to sleep shortly after receiving the meds to sedate her and easily slept through the almost the whole scan. She did start waking up just in the last few seconds of the last scan. The results should be back in about 3-4 days.

Alison went in for a weight check again today. She gained 1 lb in 4 days!!! Obviously there is a supply issue here. There is definitely no lack of appetite on Alison's part, that's for sure. Instead of the 25 ounces a day she should have been taking in, she was taking in between 34 and 36 ounces!

Alison went in for a weight check today. She didn't gain an ounce. They are doing some blood work to rule out anything else, and we have to collect a stool sample. Debbie now has to pump and then feed Alison from a bottle so we know exactly how much she is eating. She should be taking at least 25 ounces a day. She goes back on the 6th for another weight check. The doctor called the Spina Bifida clinic today because Alison's head circumference is a little bigger than expected, and he was concerned that the lack of weight gain is caused by her hydrocephalus worsening. More to come on the 6th.

Alison went for a weight check and now weighs 9 lbs, 1 oz and is 22.5" long. The doctor is concerned about her weight. She has dropped below the 5th percentile. She did manage to gain 7 oz in 2 weeks but that is not enough. The doctor did a urine test to check if a UTI (urinary tract infection) was causing her to not gain. The test came back negative. Also, the doctor has us back on the 3:00 AM feeding to see if that will make a difference. Alison goes back in on December 2nd for another weight check. Lets hope she puts on some weight.