Recovering

Peyton is continuing to improve. I took her to the pediatrician yesterday morning for a check up. The doctor said that she looked and sounded much better. We were able to stop the breathing treatments, which is good. Peyton can come off the antibiotics for the pneumonia tomorrow. We still have to give her the antibiotics for the thrush. She still has the feeding tube in, as she still is not taking her bottle too well. We are trying, and she is as well. She'll get it eventually. It's just very difficult because she makes great strides to achieve certain things and then when she has a set-back, she has to re-learn everything all over again. Hopefully the tube will come out in the next couple of weeks. The good news is that her weight is the same as it was the day she was hospitalized, so we don't have to worry about her having lost a great deal while she was ill. Hopefully Peyton will be fully recovered soon. She needs to get well for her big first birthday party!!

Hospital Update

Good morning! Last night Peyton still wasn't eating, so she had a feeding tube inserted in order to get some calories into her. She started getting treatments from the respiratory tech. as well as her breathing treatments. Sarah said that Peyton had been awake a little bit more, but mostly just wanted to sleep.

I just spoke very briefly with Sarah. Dr. Haney was in to see Peyton and thought that she sounded a bit better today. She cut back on her IV a bit and is making up the difference with her tube feedings. They are going to watch her all day again. There is a slight possibility that she may be able to go home tonight. It will all depend on how responsive she is today and what Dr. Haney thinks when she does rounds after office hours. We have to have her in tip top shape for her 1st birthday on the 15th!

Miss Moira has gone off to spend the weekend in Austin with Mimi and Aunt Jayne. I know she will have a great time there and will keep the ladies hopping!

Thanks again for all the prayers, journal entries and phone calls! Your support and concern is really appreciated.

Anne ~ Granny

Sickness and a Birthday

The past couple of weeks have been strangely calm, yet insane at the same time. As far as Peyton's ongoing medical issues go, it was calm. She's still a little down on her weight, but we're working on getting it back up. Working against this is the fact that she's got her top 4 teeth coming in all at once. She was also under the weather from last Friday til Tuesday. Her eyes are continuing to hold their own. She still has a bit of swelling inside her left eye, so she is continuing with her steroid drops. She has not had too many doctor appointments in the past couple weeks, so that has been kind of nice for a change.

I was sick, myself, with a bad flu bug coupled with a pretty nasty throat infection. I'm not 100% better just yet, but feel many times better than I did last week. I missed an entire week of work because of illness.

I managed to get well enough to have Moira's 3rd birthday party. She had her party at Chuck E. Cheese. It was just a small family get together, along with a friend and his daughter who is 8 months older than Moira. The party was fun. The best part was no mess in my house!! Moira was excited with her party and all of her gifts.

For the past week or so, the daycare has been working on transitioning Moira to the 3 year old class. She has been doing pretty well. She's adjusting to their schedule which is a little different from the 2's. Effective this coming Monday, she will officially move into the 3's. Way to go Moira!! In the middle of this, she came home with a case of pink eye and is on eye drops now for that. Never a dull moment in our house!!

We are enjoying a visit with Mom and will be sad to see her leave on Sunday. She's been a huge help to us, especially with 3 out of 4 of us being sick while she's been down. She'll be leaving us to go back home. In a couple weeks, she and Dad will celebrate their 40th wedding anniversary. We're so excited for them and wish them all the best!

A Quick Update

I took Peyton to the ophthalmologist this morning. I am very pleased to report that for the first time in many, many weeks, we have NO bad news to report! Whatever swelling that was inside her left eye is now small and just on the periphery. We're to keep giving her the steroid drops in that eye every hour. The doctor also got very good red reflexes from both eyes for the first time in ages. She seemed very pleased. We'll follow up again in a week.

After losing a pound in the first week Peyton was off the feeding tube, she has gained back a few ounces. A pound was too much to lose, so we're pleased she's coming up again. She's doing better taking her bottles as well. She's getting about 20 oz a day now. She needs to be taking in at least 25 oz. I feel confident that we will get there soon.

Peyton is rather fussy this week as she has her 4 top teeth coming in all at once. Aside from that she seems to be doing well. Last Sunday, I took Moira to the ER after her temp went up to about 105.5. It came down after a cold bath, but was still over 102 when I took her in. Turns out she had a bad ear infection. She is getting better but is still a little cranky at times.

Not too much else to report for this week. I'm not sure what to do with myself today with so little going on with Peyton! It's a good thing though. These times seem few and far between, so we're due for this! Will keep you posted on how she's doing.

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.

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.

EUA Day

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.

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!!!!

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!

Update

This has been a relatively quiet week for us. Peyton only had 3 appointments this week. Her vision teacher saw her on Monday. She said that Peyton is tracking really well as well as reaching and grabbing for things. She had her on her tummy and she did really well trying to lift her head. She also tried to work with her to get hre to roll over. On Tuesday evening, her new Occupational Therapist saw her. She also commented on how well she seems to be doing. Since this was her first time seeing Peyton, she didn't have any personal experience with her to compare to, but based on what others have told her and what she's read in her file, she has come a long way. The OT is also Peyton's new case manager in the Early Childhood Intervention program. Yesterday, Peyton saw her Ear, Nose & Throat doctor. Once he removed the big balls of wax from her ears, he said that her ears were clear with no fluid build up. Everything else checked out ok. He said he'd see her again in a year as long as nothing else comes up in the meantime.

In the next few weeks, Peyton will be seeing her opthalmologist (the glaucoma specialist). She'll probably have an eye exam done under general anesthetic around 2/05/07 or 2/12/07. That will likely be scheduled when we see him on the 1st. Or, maybe (crossing our fingers) she can skip it this month if all looks good on the 1st!! That would be nice. I'm no doctor, but her eyes look good to me. This would be the first month since August she may not have to have surgery. We see the GI doctor on 2/15/07. We are really hoping that we can get rid of the feeding tube at that time. Peyton's already far exceeded her weight expectations for that appointment, so I can't imagine why they'd keep the tube in. She had said in December that they'd probably quit cold turkey when it's time. So we really need to work on getting Peyton to take all of her feedings from her bottle. That isn't quite happening yet.

Thank God for a good week!! It's been a long, long time since we had a week that was entirely good news.