EUA Update

Peyton and I are home from the hospital. She had her eye exam under general anesthetic. Prior to going in, the doctor was in the pre-op room. I asked her about something I noticed about Peyton's right eye - her lower lid seemed to be a bit "puffy" on one end. This wasn't something new, but it wasn't getting better. Sure enough, she has "chalazions" (similar to a sty, I guess, but not a sty) See: http://www.webmd.com/eye-health/chalazion-lump-in-eyelid for more information. She had to have at least 7 surgically removed from both lower eye lids. Poor Peyton. She is resting at home now, but looks like she's been in a fight with George Foreman...and lost.

Her eye pressures are fine. More on the low side, but still in the normal range. The doctor said that the tube of the shunt in her right eye is now too long since her eye has decreased in size. She'll have to go back in September to have the tube shortened. He would have done it today, but she has too much bacteria in her eye from her other eye problem.

All went well. One procedure down. She will have her MRI on Wednesday if all goes according to plan. I'll keep you posted.

Ophthalmology & A Crazy Schedule

We are between Peyton's doctor appointments at the moment. We saw her Ophthalmologist this morning. Peyton's eye problems - the redness and irritation - appear to be something more along the lines of her developing an allergy to the natural secretions of the eyes. She wears a special type of contact lenses 24/7. In general, contacts will develop protein deposits on the lenses and need to be cleaned. I don't know if it's the material hers are made of or if all contacts eventually do this, but in hers, the protein and other secretions will embed themselves in the contact lens itself, making it impossible to clean. Apparently over time, it is possible to develop an allergy. So, she needs to be fitted for the hard version of the special contact lenses she wears. Her left lens was just replaced (soft, not hard) because she lost it. I guess she rubbed her eye so much it popped out (the lens, not her eye!), so that one is fine for now but will over time get in a bad state again. The right one has been rendered useless as it has so much build up that you literally can't even see through it. They showed me, did whatever special cleaning they do there in the office, and showed me again. No change.

In other eye-related news, Peyton's routine eye exam under general anesthetic (EUA) has been post-poned a few times and is on the schedule for this coming Monday. However, her MRI has also been post-poned for the same reasons (her general health was not good enough for a couple months because of the respiratory issues to allow her to go under general anesthetic). That is on the schedule for this coming Wednesday.

Not wanting to overload our schedules, or have so many procedures of that type so close together, we wanted to move the EUA. Her other ophthalmologist (glaucoma specialist) who is doing it said not to move it yet - to check with the regular one. He was ok with post-poning it a month but wanted to be sure she was too. Well, she's not. Her hard lenses require a very accurate measurement of the eye and is best done during an EUA because it can be done so quickly while she's out. Because Peyton's one lens needs to be tossed since it's in such bad shape, she's down to one contact which, until her new hard lenses come in, need to be switched back and forth from eye to eye every day. The doctor today said that we've worked so hard to get where we are, the last thing we want is for her to develop a lazy eye if she only has one lens in. So, long story short, she needs to show up for the EUA to take the measurement for the lenses and it needs to be done ASAP. i.e. the EUA must be done on Monday. And since the MRI is extremely important, we can't move it either. What a schedule next week.

It's always so much fun with two working parents trying to rearrange everything so we can handle all of these last minute crises!!

Off to the pediatrician shortly. We need to have Peyton checked out to make sure that at this moment she is in good physical shape to have the general anesthetic next week. I wonder what she will think of our schedule next week!

ENT Update

I am back from the ENT doctor with Peyton now. This was a follow up to her visit 7 or 8 weeks ago. That visit was a consultation regarding her sleep apnea. However, in the process, he discovered she had an ear infection. She developed another ear infection a few weeks ago. That makes at least 4 ear infections since January. The doctor has decided she is a good candidate for having tubes put in her ears. He also felt that her adenoids should also be removed. So we are scheduled for surgery on August 24th.

Since the bulk of her hearing loss and sleep apnea are neurological, the surgery probably won't help too much with those areas, but it's possible that her hearing might have some improvement - at least perhaps what little bit she can hear unaided might be clearer. The adenoid removal might reduce some obstruction as far as the apnea goes, but probably won't do too much to help there. Hopefully after this surgery Peyton will be in better shape for having such things as her MRI and eye exams which require sedation. These keep getting rescheduled because she's gotten sick and can't be sedated. Hopefully if we can reduce the number of ear infections her immune system might stand a chance at clearing up the other issues.

More appointments this afternoon - will keep you posted.

An Overdue Update

Wow. I can't believe how long it's been since I updated this journal. The time has flown by and it hasn't been uneventful!

In mid-June Peyton had a visit with her ENT doctor to discuss her sleep apnea. In the course of the appointment, he discovered she had an ear infection. It was treated. It returned. She just finished her second round of antibiotics and will return to see him next week. I'm afraid we're probably getting close to having to have tubes put in her ears. The ENT didn't want to allow her to have too many ear infections that could further compromise her hearing. She's had 4 or 5 already since December.

A visit to the ophthalmologist a couple weeks back revealed some flakiness around/in her eyes. Possibly excema. On the same day, she had an appointment with her pediatrician, so we were able to discuss the matter with both doctors. In addition to her eyes, the mild flakiness sometimes appears elsewhere on her face, but she will also get a rash periodically. The doctor thought it might be a heat rash, excema or something in between. Peyton was prescribed eye drops, an ointment for her outer eye, and a steroid cream for the rash.

In news this week, Peyton appears to have developed an allergic reaction built up over time to the eye drop she was prescribed. She has taken that particular drug several times in her life. It's the drug of choice following all her surgeries and for most problems she's had with her eyes. The inside of her eyelids were absolutely blood-shot yesterday and had several raised bumps on them. Turns out she has several styes and some advanced styes. We cut out that eye drop and ointment and have her on a new eye drop. Hopefully that helps.

Peyton had her annual review with her Early Childhood Intervention (ECI) team on Thursday. Her coordinator, developmental services, nutrition, occupational therapist, speech therapist, and hearing teachers were all present. Everything will remain pretty much the same except we dropped nutrition from her service grid. Sad to say good-bye to her nutritionist who has been wonderful, but if you could see Peyton now, you'd definitely see there's not much of a weight issue now compared to just a few months ago! Way to go Peyton!!

Peyton's physical therapist was not present, however we had a visit with her earlier that day. We're looking into various pieces of equipment that we can get for Peyton to allow her to be better positioned. We're looking at a few different seating options which would get Peyton up off the floor and into a sitting position to do things. We got her in her high chair for the first time. I've been very hesitant about putting her in it because of support issues she has. Now that I see how to do it properly, we'll be doing it all the time now!!

Peyton saw her orthopedist on Friday. It was a follow up after having the problems with her hips at birth. She had x-rays done and everything appears to be developing normally. She has very low muscle tone, so we were concerned that perhaps she might not be. However, things are looking good. We will see him in a year or one month after she starts walking - whichever comes first.

It's been a very busy past few weeks. Peyton is doing well. She's really taken to her new babysitter. She's gained more weight - she's almost 21 lbs now at 14 months! Moira is also doing fantastic in her new daycare. She keeps us on our toes!! Ron was away for work in Dayton, OH on Monday through Wednesday of this week, so I got to handle both kids myself during that time. I need a vacation!! They were both good girls for me but I'm happy to have my helper back!!

We're crazy people and are heading off shortly for a little weekend jaunt to Albuquerque. I think it's about 14 hours...and we're driving. Leaving shortly and will be back Tuesday night. We just wanted to see something different. Hopefully all goes well. Will keep you posted on Peyton's progress next week.