Saturday, February 24, 2007

Various Updates

This past Thursday, I took Peyton to her regular opthalmologist. For the first time in weeks, the doctor got a good red reflex from her left eye. This was a good thing! There is some part inside the eye which has been swollen for a few weeks. The doctor increased her medication for that. Hopefully it will be much improved when we go back next week. This was the first time in weeks that this doctor didn't either call or send us over immediately to the glaucoma specialist!
In the afternoon, we had Peyton's 9 month check up with the pediatrician. Her weight is down roughly a pound since the feeding tube was removed a week ago. We need to get her feedings back up to what they were. She's doing, at best, about 18 oz a day which is not quite good enough. She needs to be closer to 28-30 oz a day. Still, it's much better than we'd thought she'd be doing. Hopefully given a little time, she will improve. We don't want her weight dropping off. That was a little too much for one week.
I spoke with the neurologist this week as well. The results of the skin biopsy from about 6 1/2 weeks ago showed no chromosomal abnormalities. So, Peyton does not have the syndrome he thought she had. So we are no further ahead than we were before. He and her pediatrician still feel that this "constellation" of symptoms is a syndrome. However, it would have to be so rare, probably, that it is an undiscovered syndrome. For now, it's that "Peyton" syndrome. We have no diagnosis and no prognosis. In fact, at this point, if we were to find out what syndrome it is, it would probably be a matter of treating each symptom therapeutically and following her development very closely because there wouldn't be enough research available to say what should be done or what the long-range outcome of such a syndrome would be. Very sad and frustrating, but that's where we are at with that.
We had a wonderful visit with Moira's godmother, Debbi, and her daughter Emma. Moira loved having another little one in the house to chase around. I think they wore each other out! It was great to see them. Hopefully it won't be too long til we see each other again. They flew back to Tucson, AZ this afternoon.
All in all, it was a really good week. I was a little stressed out as to what might be. Hoping for more news on the genetics front, but it is what it is. We'll keep you updated as always!

Tuesday, February 20, 2007

Chunky Monkey

I added a new picture of Peyton today. I thought everyone should see just how big she's gotten since she had the NG tube put in (and taken out!!). She is a chunky monkey!! She is doing much better with her bottles than we thought she would do, but she's still only taking in about 16 oz a day as opposed to 28-30 with the feeding tube. Each day is a little better.
Peyton is looking forward to meeting a new little playmate today. Moira's godmother, Debbi, from Tucson, AZ is flying in with her 1 year old, Emma, this afternoon. We haven't seen Debbi in about 2 years and, therefore, have never met little Emma. We're excited to see them.
Counting the days til Moira's 3rd birthday. I still can't believe it. She is doing really well with her potty training. We're almost there!! She's also been such a good big sister to Peyton. She now enjoys 'helping' out when she can (or is that when she feels like it??). She loves her little sister!
Apparently there is news on the genetics testing front. We called the neurologist about that yesterday since it was 6 weeks ago that they did the skin biopsy. He had said it would be anywhere from 2-6 weeks for results. The doctor was out, but his secretary was curious that he hadn't spoken to us because she knew he spoke to someone about the results. I am not sure what that means - is it good or bad?! We kind of feel like it must be something if he was talking to someone about it. He'll be back on Thursday, so we just have to wait. We'll keep you posted.

Thursday, February 15, 2007

A Good Day!

Today is a GOOD day!!
Ron took Peyton to her opthalmologist this morning. She had to call the glaucoma specialist because the pressure in her left eye is too low. So, Peyton's back on drops for that. Her eye infection has cleared up but will still take antibiotics for a few more days. Not a perfect visit, but it was good.
This afternoon, I took Peyton to her gastroenterologist. Peyton had to weight at least 15.5 lbs by today. She checked in at 18 lbs 9 oz!! The doctor was quite impressed, said she had gotten chunky and needed to do something about that. Her height and weight are in the 25th and 50th percentiles, respectively, now. She is thinking her height will probably follow along the 25th percentile but she doesn't want to see a dramatic jump in her weight again. It was good for now but we don't need it to happen again. So, she called in the nutritionist to figure out what sort of concoction we needed to be mixing up to get the right number of calories. We were at 4 oz milk mixed with 2.5 tsp formula and 1 ml of canola oil. After running the numbers, it was decided that straight milk was good enough. Great!! Formula's expensive!!
I discussed Peyton's aversion to her bottles. The doctor listened and nodded. When I was done, she said Peyton was too heavy. So, basically, she's become so fat she's turned off her food?? Man, I wish that worked in the adult world!!! Because Peyton is having bottle feeding issues, I was given the option to leave the tube in a little longer and keep working with her, or take it out and go cold turkey and see how she does. This evening we will be having the 'ceremonial' removal of the feeding tube!!!
So, now we have a big feeding challenge ahead of us. Since Peyton is not taking her bottles well, she doesn't have another way to get her food. The thought is that if she's too heavy right now, perhaps if she loses just a little it might be enough for her to get an appetite back. The doctor is not allowing her to lose very much weight at all before she'd want something done, so we really need for things to work.
This has been a good day. The feeding tube will be gone shortly. I'm just thrilled about that. We knew it had to be done but we hated doing it. So, now it's on to our next challenge!! We'll keep you posted on how she's doing.

Monday, February 12, 2007


This morning, I took Peyton to the hospital for her eye exam done under general anesthetic, with possible surgery. They had a cancellation while I was en route, so we were taken back to pre-op as soon as we arrived. Minutes later she was being taken back. When the doctor came out, he said that her pressures in her eyes looked good. In fact, the left eye (which was the reason we were there in the first place) was actually on the low side. Since she was doing well, there was no need to do any type of surgery. The only thing he did was to prescribe an antibiotic. Last Thursday, Peyton had a little mucus in her left eye. Friday night I was calling the doctor on call to see what was going on because it was much, much worse. We left it over night but went to the hospital to the doctor's office to have it checked out. The doctor there didn't think it was an infection, but rather a blocked tear duct causing all of the mucus to back up. He called Peyton's opthalmologist to confer with him and we were sent on our way thinking it would clear up shortly. This morning, it took a lot of work to "unglue" Peyton's eye lids as they were stuck together from all the mucus oozing from her eye. The doctor got a really good look since she was out, and he said that it was some sort of bacterial infection. Hopefully it will clear up soon now that we have the antibiotics.
Peyton is home from the hospital resting now. She's still a little groggy from the anesthetic, but she seems to be doing ok. I'll try to feed her in a little bit. She's been extremely fussy about taking her bottles ever since she was sick a few weeks ago. She is taking most of her feedings through her feeding tube. We're really hoping and praying that that turns itself around very soon. We see the gastroenterologist this coming Thursday and we are hoping to say good-bye to that feeding tube!! If she's not feeding well, though, we may not be able to. That's the bad thing about that tube - we used it reluctantly because we felt we had to but by using it it can cause more feeding problems than what you started with. We just have to keep on working with her. Before she was sick, she was doing quite well with her feedings on her own, so hopefully once this infection clears up and she's feeling more "normal" maybe it will improve.
We'll keep you posted on how the rest of her appointments go later in the week.

Thursday, February 8, 2007

Weight Update!

Just a quick update. We went to the pediatrician this afternoon. Peyton weighed in a a whopping 18 lbs 3 oz. Way ahead of the 15 1/2 lbs she was to have reached by next week for her GI specialist! Way to go Peyton!!!!

"Doctor" Day

We seemed to be doing so well for a while. I guess we got used to that too quickly! Today is "doctor" day. Peyton had a check up with her opthalmologist. A couple weeks back, she saw this doctor. The doctor couldn't get a great look inside the left eye because of the recent surgery to put the shunt in. She decided to give it a couple weeks, have us come back and see if things improved. That was what today's appointment was about. The good news is that Peyton's right eye is looking great and the doctor expects to get good vision out of that eye, with a fairly substantial prescription. Unfortunately, one month post-surgery, Peyton's left eye would not cooperate. The doctor couldn't get a look inside the eye at all. The cornea is cloudy - an indication of increased pressure due to the glaucoma. Since there's a shunt in place, this should not be happening. She immediately got on the phone to the glaucoma specialist and sent us right over there. He looked at her eye and went ahead and scheduled an eye exam under general anesthetic with possible surgery for this coming Monday. It may be that all he needs to do is remove a suture but we'll see what he finds.
So, here we go with another general anesthetic (Peyton's 11th) and possible surgery (would be her 10th). The regular opthalmologist was rather grim this morning. She is deeply concerned with the left eye. The biggest concern is that if this glaucoma problem cannot be resolved as quickly as possible, Peyton could very well lose vision in her left eye permanently. News like that is never good to hear. We already have to much to deal with with her having moderately severe hearing loss. We have known all along that she also has great vision issues, but have always hoped that with a lot of correction she should do well enough. I can't imagine how much more challenging it would be if she winds up blind in one or both eyes.
We are off to the pediatrician this afternoon for some follow up lab work. Hopefully we come away with good news.
Still waiting on the results of the genetics testing done on 1/8/07. I'm getting anxious!
We have an appointment with a 2nd neurosurgeon in April to discuss the tightening at the junction of the spine/skull. The first didn't want to do surgery, which is fantastic, but it's an awfully serious thing to NOT get a second opinion on.
Moira's taking everything in stride. I told her I was taking Peyton to the doctor and she asked if Peyton was sick. I said no, it was just a check up. She asked if Peyton's eyes hurt. I said yes. Then she declared she wanted cake. This was at 6:45 this morning. She's been declaring that desire for days as, for some reason, she thinks every day should be her birthday!! Just over a month to go and then she can have her cake.
Will keep you all posted on how Peyton makes out on Monday. Thank you all once again for all the support you have given us. We are grateful for it and are mindful of all of your support every single day.

Thursday, February 1, 2007

Peyton is Sick

We had such a good week last week! Then things turned a little for us. Peyton had a little fever on Saturday and was fairly fussy. At 6am Sunday, she woke up screaming which is very unlike her. She was burning up - had a temp of 102.2. We did everything we could to try to bring down the temperature, but she hovered between 100.5-102 almost all day. We talked to a nurse at the pediatrician's office first thing in the morning and she thought it sounded like we were ok to wait til Monday to see the doctor.
We saw the pediatrician on Monday and it looks like Peyton had some sort of virus and possibly a bladder infection. Her fever broke early Monday morning and did not return. She was able to go back to her daycare on Tuesday.
When the doctor weighed her, Peyton weighed in at a whopping 16 lbs 12 oz!!! This was fantastic news. Her goal weight for our next visit to the Gastroenterologist on 2/15/07 was 15 lbs 8 oz, so she's doing great. Our concern now is making sure all of her feedings are by bottle and not the tube. She was doing good til she got sick - probably 90% of her feedings were by bottle. Now it's the other way around. Hopefully that will change as she starts feeling more like herself.
I took Peyton to her glaucoma specialist this morning. Her eyes are looking pretty good. The left eye (the one to have the shunt put in most recently) is a little hazy, so probably the pressure is still up a bit, but it may go down over the next day or so as the suture inside is now at the point where it is dissolving. She needs to be fitted for a new contact lens for her left eye as her current one is not sitting in place properly.
All in all, it's been a good week, feeding issues and virus aside. We are still waiting the results of the genetics testing from the skin biopsy done on 1/8/07. Hopefully we won't have to wait much longer.
Moira's doing great. I can't believe she'll be 3 next month!! Where did the time go?? We're debating having her birthday party at Chuck E. Cheese. I'm sure she would love that.
Peyton's hearing and vision teachers are coming this afternoon. I'm sure that will go well. They haven't been here together before. They only share a few students. They wanted to make sure they were on the same page as far as what they were doing to work with her. That is a good thing.
Will keep you posted on how Peyton is doing. Seems like we've finally gotten into a good stretch where we don't have a whole lot going on with her!! I can handle the ordinary things like hearing/vision teachers and occupational therapy!