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.

Surgery Follow Ups & New Therapists

Peyton had her 1 month follow up with her Neurosurgeon this afternoon. I am very happy to report she is doing well. Unless something else comes up, she doesn't have to see him for another 6 months. At that time, he will decide if another MRI study is necessary.

She will see her ENT for her 1 month follow up for her ear tubes/adenoid surgery on Thursday.

Peyton's new physical and occupational therapy is going really well, although she's missing some this week due to all her other doctor appointments. Still, she's getting more than she was. We're wearing her out with all this therapy now!

Will keep you updated on her upcoming appointments.

Updates: Post-Surgery & Therapies

It has been a while since I updated my journal, so I thought I should take a minute to do just that. Right now, life is moving along pretty well, with a few glitches thrown in here and there just for fun.

Mom/Granny is still down visiting and is enjoying her time with the girls. Ron and I had a great time on our vacation in Las Vegas, but I was anxious to get back to the kids. Peyton and Moira did very well while we were gone. Mom got a taste of what it is like to be "us" for a while. Hopefully she'll come back and visit us again after she leaves on Sunday!

Peyton's feeding has improved tremendously in the past few weeks. Ron and I were never able to feed her jarred baby foods. However, now I am able to. She is doing well in her high chair for feedings. I do have to hold her face to get her to open her mouth to get the spoon in. When the food goes in, there's often a grimace from Peyton (not always though), and she will swallow her food. So far, she really seems to enjoy carrots and bananas. She likes the peaches and the jarred rice cereal with applesauce mixed in. This is a huge breakthrough for us, because at almost 16 months, she's still mainly on formula. If we can move her over to more jarred foods, I'll feel much better about the nutrition she is getting.

In another turn of events, we have also removed Peyton from her physical and occupational therapy services provided by the Early Childhood Intervention (ECI) program. She has had evaluations for both with a private therapy provider and will start her actual therapy next week. She goes from 4x/month with ECI for PT to 2x/week with the new place. She goes from 2x/month with ECI to 1 to 2x/week with the new place. The new therapists put her at between 3-6 months developmentally in terms of her motor skills. We need pretty intensive therapy to get her back on track. We've noticed particularly lately that her improvement was not as good as we'd like to see because she just wasn't getting the amount of therapy she was supposed to be getting.

If anyone knows of a way to clone me, please let me know. I have NO clue how this is all supposed to play out, as her PT was done mostly at the daycare provider's home without us having to be there. Now, I am happy to be directly involved now, but it's definitely a strain our our schedules. Necessary, but I have NO clue how to handle this.

Peyton seems to have recovered well from all her recent surgeries. She will follow up with the Neurosurgeon and the ENT doctors next week. The one negative from the post-surgical improvements we noticed is that she now needs to be on her oxygen at night once again. Not sure why it improved and now is back to where it was before.

Aside from all this, we're doing well. Overwhelmed, stressed, and clueless at how to handle the overloaded schedule Peyton has, but we are surprisingly well! (At least I think we are!) I'll keep you posted on how her follow up appointments go and how her new therapists are working out.