Swallow Study

I just got back from taking Peyton for a swallow function study at Texas Children's Hospital. They wanted to be sure she's swallowing properly when eating - make sure all the right parts are working. Well, they aren't. The speech pathologist called the doctor who ordered the test but he's out of the country. Even though she is eating, feeding her is not without a great deal of difficulty if it's by spoon. She can handle her bottle herself. However, the study showed that she is aspirating a fair amount of food - liquid and the pureed baby food - when she is eating. She is also not using her tongue at all. When feeding by spoon, you basically have to scrape the food off on her upper lip to get it in her mouth and let her take over from there, but she's not using her tongue at all. That means she's just letting gravity make the food fall to the back and be pulled down her throat, increasing her likelihood of aspirating her food. Aspiration of food is probably why she always sounds congested. It is also putting her at great risk of getting pneumonia, which she has already had once back in May. With all her other issues, that is not a good risk to have. The speech pathologist needs to talk to the doctor, but very likely we'll be referred back to the gastroenterologist and will very likely have Peyton put on an NG tube (feeding tube down the nose) for a few months, all while receiving intensive speech and feeding therapy (hoping we can get her in quickly!). After a few months, they'd repeat the same study. So, while she'd be on the NG tube, there'd be no food by mouth meaning her oral-motor skills could potentially worsen since she wouldn't be eating (though therapy would help that hopefully) and she would become more orally defensive. She already is quite orally defensive, so I can hardly wait to see how "worse" would look.

Once again, she takes a few steps forward and many, many steps back. Not at all the news I was hoping for today.

Glaucoma Update

We had a good report from the ophthalmologist (the glaucoma specialist) yesterday. Peyton went in to the hospital Monday for surgery. She was to have the tubes of the shunts in her eyes shortened as well as remove a chalazion from her left eye lid. The doctor performed the eye exam under general anesthetic and found that the shunt tubes did not need to be shortened at this time. He said that as her eye grows, the shunts will shift. So, whereas he felt it necessary to shorten them when she had her eye exam back in July, it was now not necessary. However, he did say that they are shifting in the direction of needing shortened, but they are not yet in a position where they will cause damage to her cornea. He wants to keep a close eye on this but doesn't want to do surgery until it's absolutely necessary. I suppose that is to minimize the chance of having to do it again later as her eye continues to grow. As for the chalazion, it must have gotten better, as he did not see that it was necessary to do anything about that either. So, if you're thinking this was all a waste of time and an unnecessary general anesthetic (Peyton's 15th), it really wasn't. She was due for her routine eye exam which must be done under general anesthetic. This is to check the pressures in her eyes. The doctor said her pressures are great. We'll repeat the exam in 3-4 months to make sure they are still good and to be sure the shunt is in a good position. The worst thing about yesterday's procedure was that Peyton's veins are terrible now and they had much difficulty finding a vein for her IV. This has been happening with the past several procedures. I had never seen this before, but they had to place the IV in her neck! Poor baby.

I took Peyton to the pediatrician last Thursday to have her cleared for sedation for the eye exam. Peyton is now 17 months and is 21 lbs 12 oz and is 31 inches long!! She got caught up on her vaccinations from 15 months and got her flu shot. The doctor also told me that she ought to see a dentist for a check up since she has about 16 teeth now. Since she is extremely sensitive to touch, it is impossible for me to get in even with one of those little baby toothbrushes you slip on your finger. The doctor told me not to worry about not being able to get in myself, but to see a dentist and make sure she's doing ok there. I wound up not using one of her recommended dentists as they weren't in my insurance plan, but I did call Texas Children's Hospital myself and found that they offer routine dental services to special needs children and children with complex diagnoses. So, Peyton has her first dental visit on Nov. 8th. It would not surprise me in the least if she had to have a routine cleaning done under sedation. I suppose I'll find out on the 8th.

Aside from that, Moira's cold is lingering on still. I'm starting to get my second cold in as many weeks. We're all enjoying our visit with my parents and will be sad to see them leave tomorrow. At least it's only about 2 months til we see them again. Hard to believe Christmas is in 2 months and 2 days!! Where did the year go???

Another Upcoming Surgery

Peyton had another sudden doctor visit yesterday. Instead of going to her physical therapy appointment, she wound up seeing her Ophthalmologist instead. Her left eye has been irritated and her eye lid was pretty red and swollen. Not wanting to take any chances with her eyes, Ron took her to the doctor. It turns out she has another "chalazion" in her eye lid. Basically it is a gland or duct that is clogged with oils. It becomes irritated and unable to drain, so it forms a lump in the eye lid. It's not a sty, although it's kind of similar. Since Peyton is scheduled for surgery on Monday, she will have this chalazion removed at that time. The surgery is to shorten the tubes in the shunts in her eyes.

Aside from that, she is doing quite well with her therapies. She's getting much stronger each day. We're still a long way from reaching many milestones, but I have a feeling like maybe Peyton being able to sit unassisted may be the next milestone she reaches. I think it's still a long way off, but she is getting stronger. Her head is still wobbly and she doesn't have great upper body strength, but hopefully in the next several weeks she might be able to sit on her own. We'll see. Only time will tell!!

We are looking forward to a visit with my Mom and Dad. They will be arriving tomorrow and will stay for a week. I'm sure they will see a huge difference in Peyton. Dad especially, since he hasn't seen her since Peyton's birthday in May.

We will see them again in just a couple months as we will be spending Christmas in Canada this year. We're driving. You can't take the oxygen tanks we have for Peyton on airplanes, so that means we have to drive. Fortunately, the kids are GREAT travelers. In July, we drove to Albuquerque - about 15 hours or so from here. We drove straight through and they didn't start to fuss until we were about 5 miles from our hotel! Hopefully that luck continues with this trip. It'll be too cold to pull in at a rest stop and let Moira run around on this trip!

I'll update regarding Peyton's surgery next week.

A Variety of Updates

Peyton had a sudden visit to her Pediatrician last week. She was coughing and sounded quite congested, not unlike the time she was hospitalized in early May. So, we were quite concerned. However, it was the croup and it appeared as if she was over the worst by that point, despite the fact that her cough was at its worst. The cough is still persisting, although her chest is clear. I'm not convinced she was over the worst. Moira has a bit of the same cough now, but she hasn't been as bad as Peyton so far.

Peyton had her 1 month follow up with her ENT last Thursday. All went well. No ear infections or fluid build up in her ears since her surgery!! He will see her again in 6 months.

Peyton had her 6 month follow up with her Geneticist today. It was more of an observational visit from the doctor's standpoint. He took in all the information about what's been going on with her since last April. Did I mention it was a very long appointment?? He is still convinced Peyton has some sort of chromosomal disorder, although all the publicly available testing has been done on her and has turned up nothing. He offered the opportunity for her to take part in a research study - one simple blood test. The last panel tested for 500-600 disorders. This test apparently is far more extensive. It is not publicly available and at his discretion, was able to offer this research opportunity to us free of charge. As such, it is not a part of her medical record; however, if it does happen to turn up some answers for us, they will work towards making her results a part of her record so they can continue following her. We should know in a month or so what the results are, if any. If nothing turns up, her doctor will continue to follow her progress as he has been. He said he hopesto be able to come up with a diagnosis one day, but obviously cannot say with 100% certainty that he will. He will see her again in 6-9 months, unless he needs to see her sooner for this study.

I, myself, after almost 2 years of neglect, and after some of the greatest agony of my life have finally gotten around to finding a new Chiropractor. I have not been in nearly 2 years. I simply have not have the time to take care of me since I have put all my energy into Peyton since she was born. I live in constant pain, periodic agony, and with a decreased enjoyment of life due to this pain. Since I can no longer take the mental side of this problem, I finally gave in and went to a Chiropractor recommended to me by a Naturopath that I also started seeing recently in an effort to take care of "me". X-rays showed a 75% loss of curve in my spine. No wonder I'm in pain! I've had 2 adjustments. Feels great for a while afterwards, but the following day....that's another story. I don't think I can ever find a replacement for the Chiropractor I left behind back home, but this one is pretty good. His approach is the closest I've found to him, so we'll see what happens. I'm sure Ron is anxious to see results quickly as I am sure he has grown weary of my pain and how it has drained me emotionally for the past many months.

This Thursday will be a full day for Peyton and I. She has her standard hearing and vision teacher appointments. She also has an appointment with her Neurologist who she hasn't seen in many months, having been rescheduled once or twice due to surgery. I am anxious to hear what he has to say and what sort of research he has done since we last visited with him.

PT and OT continue to go well, although Peyton got a break from them last week due to an assortment of other appointments which interfered with her therapy schedule. The PT commented today that Peyton's neck seems to be getting stronger just in the past couple weeks of going to the new place. Way to go Peyton!! We are so proud of you!

While I'm bragging on Peyton, I'll also take a moment to brag on Moira who thinks she is becoming quite the accomplished ballerina. She has been taking ballet lessons for the past month. A dance teacher comes every Wednesday and offers classes to the various age levels, starting with the 3's. They will have a recital in December and one in May. Moira loves her ballet classes.

I will keep you posted after our visits this week.