Taegan has a follow-up appointment with the physiatrist on February 5th. She will be determining if the night splint is effectively controlling Taegan's muscle tone in her left foot, or if we should try a more aggressive approach like serial casting and Botox injections.
Also, she wants to go over past blood work/tests Taegan's had done (birth-present), as she's concerned about a possible genetic disorder. No specific disorders were mentioned, only that there are some that fit the characteristics of Taegan's bowel problems, as well as some of her physical features.
The physiatrist is the doctor who ordered the PH probe and EEG monitoring be included in the sleep study, which of course was not implemented. So, I'm not sure whether we'll have to do these tests separately or not.
I believe I am supposed to be scheduling an appointment with a neurologist for EEG testing as well... Also, hip X-rays were discussed at our previous meeting, but no order was written for it.
She will also have her first appointment with a neuropsychologist this day as well, although I think the appointment is more geared towards the parent. I believe he will be discussing possible behavioral issues that could arise that are characteristic of cerebral palsy diagnosis, and how to best handle them if/when they arise.
On February 7th, she will have an appointment with the pediatric ophthalmologist. She's seen him 3 previous times, all in her first year of life. With Taegan's PVL diagnosis, it is common to have vision problems. Some PVL children have cortical blindness, retinopathy, cataracts, and a whole plethora of other vision issues. Thankfully, Taegan only has an astigmatism in both eyes (as of her last eye appt. at 12 months old).
Taegan hasn't been able to wear her night splint consistently due to the excessive sweating issue. The orthotist ordered two types of special sweat absorbent socks that just arrived Friday, so we will be trying those out and hoping that solves the problem.
Since the last update on December 2nd, Taegan has had another cold and also a stomach virus. She's currently fighting off the beginnings of yet another cold... in the sneezing/itchy nose stage at the present time. I have no idea where the exposure to these illnesses is coming from, as I am careful where I take her during RSV season (October-May). This is the first year we're not living like hermits during RSV season. She doesn't have to receive the RSV shots monthly anymore, thank goodness. They were nearly $6,000 per shot!!! She does have contact with other children and shared toys at the facility where she has her hippotherapy once a week. That could be where she's coming into contact with all these lovely germs... also, her immune system is still fragile, as she hasn't built up much immunity to all the germs that are out there. Other than that, she makes the occasional trip to the grocery store etc. Go figure, I guess it's inevitable.
Overall, she's just not been her normal, pleasant self for about 3 months. She's cranky and just doesn't act like she feels well. I suspect she's having reflux issues again. She continues to have bowel issues, despite being on a prescription medication for constipation for the past year.
She has also struggled with eating, and has progressively gotten more finicky with what and when she will eat. Most days, I rely on the Pediasure supplement to meet her nutritional requirements.
At Taegan's two year pediatrician visit, she weighed 26 pounds. Six months later, she has only gained a few OUNCES. She is in the bottom 25th percentile for height and weight for her age.
In mid December she was re-evaluated by the nutritionist/dietitian and again qualifies for services. She will be seen once a month.
Taegan's sleep hasn't improved... she continues to sleep for 2-3 hour stretches most nights, and is then up for hours at a time. She just lies in her crib babbling and crawling around, and singing to herself, with an occasional holler here and there. Most days, she refuses her nap. I still make her lay down for one, and get her up after 90 minutes if she's not sleeping. I don't understand how she can be so tired, and yet not sleep! This is something I will discuss with the physiatrist again in February. (as I type this entry at 4:03 AM, she has been up for the past 70 minutes. She didn't fall asleep until close to midnight tonight as well...so there's her 3 hour stretch!)
The lack of sleep is carrying over into all of Taegan's therapy sessions. She is so tired, she is not wanting to participate. She's also very grouchy as a result... which I understand, because I am too when I am sleep deprived. So, overall, Taegan and I have been a pretty grumpy duo.
January 11th Taegan will be re-evaluated by the Occupational Therapist, Physical Therapist, Developmental Therapist, and Speech Therapist by the early intervention team here in our state. This is to make sure she still qualifies for services (which she's entitled to until she is 3 yrs old.) She will definitely qualify for services, as she's still very delayed in all areas. They call that "globally delayed."
On January 17th, all of her current therapists and her therapy service coordinator will meet with me and discuss the results from the evaluation the week prior. We will then write new goals for each therapy, and a time line in which we hope they will be achieved. Also, a teacher from the school system will be coming out to the house to discuss placing Taegan into the special needs preschool program in our district for August, 2007.
I think that's it as far as upcoming appointments are concerned... Hopefully the ENT appointment will be before February!!!