Hello everyone! Just wanted to update you on how things are going. We're just shy of reaching the halfway mark on our fundraising goal of $4,400 for Taegan to be able to go to the Cole Center For Healing in Cincinnati. Thank you again to everyone who has donated to Taegan's fund.
Taegan was sick twice during the month of November.... both times with colds. Thankfully, her regressions haven't been as significant as they have been during past illnesses.
She is scheduled for a sleep study at the children's hospital on December 19th. The previous two appointments were canceled, once due to the lab over booking patients, and the most recent cancelation due to Taegan's illness.
Taegan is still adjusting to the night splint... it makes her leg/foot very hot and sweaty (and probably makes it uncomfortable), but this week she has been able to keep it on all night long for the past 3 days.
Sleeping has been especially challenging for Taegan for the past 6 weeks. I'm not sure what is causing this disturbance in her normal sleep pattern (usually she will sleep for 4-5 hour stretches and then awakens.) In recent weeks, she sleeps 2-4 hours and is up for 3+ hours before falling back to sleep. She has been quite grouchy and appears sleepy much of the time, and yet will not fall asleep! She's gotten some relief while taking Dallergy to help with congestion, as it makes her drowsy. She has been able to sleep 5-6 hours while taking that medication.
Last week, I took Taegan for an appointment with a physiatrist. A physiatrist is a medical doctor who specializes in the area of physical medicine and rehabilitation. It was a very informative meeting for me.
The physiatrist has recommended we meet with a neuropsychologist as well. They will be calling me to schedule the appointment for the beginning of the year.
The physiatrist has asked that I track down all of Taegan's blood work records from the NICU to present day. She is concerned that Taegan may have a genetic syndrome that is linked with a flat nose bridge and difficulty with bowel habits. This isn't the first time a 'genetic syndrome' possibility has been discussed. Taegan's GI specialist sent her for chromosomal testing in 2005. Those tests came back negative. I am not sure what the test was called that they gave her, so I especially need to track that one down so it is not repeated ($$$$!!!!)
The physiatrist also mentioned the possibility of serial casting in a few months, if the night splint and her day time braces do not help to improve the flexibility of her left foot/ankle. Also, she is concerned with Taegan's hips... her legs appear to be internally rotating (giving the appearance of pigeon toed walking etc.) She mentioned a device that goes on like a belt and has several straps that would go down and around Taegan's legs that would pull her legs out of the inversion and align the head of the femur bone into the hip sockets better. Before this device might be ordered, the physiatrist has asked that we have Taegan's hips X-rayed again to rule out dysplasia and some other abnormalities. Taegan's X-rays when she was 13 months old showed no signs of dysplasia at that time. She said that it was important to have hip X-rays done every 6 months until Taegan's 5th birthday.
The physiatrist has also ordered a PH probe be placed down Taegan's throat during the duration of her sleep study on December 19th. This is to determine whether she is still suffering from reflux, as this could be a possibility for her sleeplessness and irregular sleep patterns. Also, she has ordered a EEG be performed during the sleep study as well. This will show whether Taegan is having seizures during sleep, which also could be disrupting her sleep cycle/pattern.
It was reassuring to hear the physiatrist speak of how other parents of CP children complain about sleep issues. Apparently, the CP brain has difficulty transitioning from one activity to another and also isn't able to recognize the cues for upcoming transitions. She explained we have to train the brain. We are to create a schedule. For example, before Taegan's bedtime, we should do the same activities every night in the same order. So, we will have a bath, brush teeth, read a book and go to bed. This is to be the same pattern every time, so that her brain is trained or 'cued' when to begin to calm down and prepare for sleep.
The physiatrist mentioned that many CP children require medication for sleep, as their brains simply cannot fall into this pattern to settle down enough to sleep. I had been trying melatonin with Taegan since the summer time, and it seemed to have little effect. The physiatrist mentioned that I probably wasn't giving her a high enough dosage, as CP brains require a much higher dosage to be effective.
The increased dosage has seemed to help, but it doesn't keep her asleep. It just helps her to fall asleep. At least with the melatonin, she doesn't lay in her bed for 2+ hours babbling and squirming around as she had been.
We are also supposed to be making an appointment with a new neurologist so that he/she might be able to explain the MRI results to us better as well as look into the concern of absent mal seizures (petit mal seizures.)
Taegan continues to do well in her therapies. This week she finishes up her fall session of hippotherapy down at PALS in Bloomington. She will begin sessions again in the spring. She will continue her hippotherapy in Carmel at TherAplay throughout the winter, as it is a heated, indoor facility. She absolutely loves the horses. It brings me great joy to see her smiling and clapping while riding the horses. She is very vocal afterwards as well. I think there is magnificent healing that occurs between animals and humans... I'd love to one day take Taegan for dolphin assisted therapy. (It actually has always been a dream of mine, to become a dolphin assisted therapy therapist!)
The nutritionist/dietitian will be re-evaluating Taegan on the 14th due to weight loss and difficulty with eating over the last 2+ months. Taegan refuses foods she previously has devoured (i.e. spaghetti, macaroni & cheese, peaches, pears, carrots.) Her diet mainly consists of oatmeal, Nutra Grain Cereal bars, green beans, mashed potatoes and Teddy Grahams. On any given day, she may refuse even these foods! She prefers a liquid diet, so I've been increasing her Pediasure supplement daily.
Taegan has noticeably become more frustrated with her inability to communicate effectively. The speech therapist has commented on this as well. We've tried sign language and augmentatives (pictures) and so far haven't had much success. We're discussing the possibility of button switches, where she can press a button and a pre-recorded message (by whomever, mommy, daddy, grandma etc.) will talk for her. I'm hoping this will help with Taegan's feeding issues. Hopefully it will allow her to communicate a choice of what she wishes to eat at meal time. Simple pointing between two choices of food has not worked. It just breaks my heart when she becomes so frustrated.
I hope we can get her to the Cole Center For Healing in early 2007... perhaps many of these issues will be resolved as a result. We can only hope....