Well, we made it home from our trip to Denver late last night. The doctor appointments went very well . . . most were just routine check-ups. We started out with Dr. Pickler in the Oral feeding clinic along with an OT, PT and Nutritionist. Conclusion for now is that Torah will probably not ever sustain her self by oral feeding alone, so we are not going to push anything. They want us to get Torah to where she enjoys having her teeth brushed (that will be an amazing day!!).
Our next appt was with Dr. E in the Special Care Clinic. Everyone was concerned that she had lost a few pounds since her last visit, but I told them that after Torah's surgery she lost quiet a bit and is slowly gaining it back . . . at least they agreed that she looked good and healthy! I asked Dr. E about the DNA testing that we did on Torah last March and she told me that once again it came back normal (so kind of back to square one). The doctor did put Torah on a Vitamin D supplement, for now we are just giving Torah one dose, but if blood results come back and show that she is really low on Vit D - then we will have to probably give her two or maybe even three doses daily.
Dr. Scott was next at the Dentist office. First visit and we really like her (hoping that we can keep her!). She doesnt want to sedate Torah just to clean all the tarter off of her teeth, so we are going to wait till something else comes up (like an MRI) to join up. She does have all 20 teeth and just by looking - no cavities (Dr said that since she does not eat by mouth - she will have no chance of getting cavities). That is the end of Day 1 . . . but the weather was so nice that we went shopping that night for a few Christmas gifts and more or less to just get out and enjoy the air!
Our next appt was with Dr. E in the Special Care Clinic. Everyone was concerned that she had lost a few pounds since her last visit, but I told them that after Torah's surgery she lost quiet a bit and is slowly gaining it back . . . at least they agreed that she looked good and healthy! I asked Dr. E about the DNA testing that we did on Torah last March and she told me that once again it came back normal (so kind of back to square one). The doctor did put Torah on a Vitamin D supplement, for now we are just giving Torah one dose, but if blood results come back and show that she is really low on Vit D - then we will have to probably give her two or maybe even three doses daily.
Dr. Scott was next at the Dentist office. First visit and we really like her (hoping that we can keep her!). She doesnt want to sedate Torah just to clean all the tarter off of her teeth, so we are going to wait till something else comes up (like an MRI) to join up. She does have all 20 teeth and just by looking - no cavities (Dr said that since she does not eat by mouth - she will have no chance of getting cavities). That is the end of Day 1 . . . but the weather was so nice that we went shopping that night for a few Christmas gifts and more or less to just get out and enjoy the air!
Day Two had two more doctor appointments plus some lab work. We started off with the Neurologist. We did not get to see our normal doctor, but a gal that works under her. I am almost waiting for a phone call that they are going to up her seizure med or maybe put her on a new med in addition to what she is already taking . . . only because she had those small seizures around Thanksgiving and even though she lost weight and her current dosage should be enough, I just dont want any emergency trips to Denver in the next few months. So, we wait to see what happens I guess.
After lab work and lunch, we headed up to see our Orthopedic doctor who did the surgery on Torah last August. Everything looks great and her bones are all healed up! (see below)
After lab work and lunch, we headed up to see our Orthopedic doctor who did the surgery on Torah last August. Everything looks great and her bones are all healed up! (see below)
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I also had them take more x-rays of her spine
to check how her Scoliosis is doing . .
to check how her Scoliosis is doing . .
Front view with out back brace (35 degree curve)
Front view with back brace (39 degree curve)
Side view without back brace
Side view with back braceThe back brace dose not seem to be really helping her Scoliosis (although it is helping her sit up straighter). So on our why back home from Kansas, we will be stopping by TCH to meet with a guy to take a casting of Torah to fit her for a new more rigid back brace.
Well, I guess that does it for now . . . although a year ago today I was delivering my baby boy Tyler . . . HAPPY BIRTHDAY TY!!!!
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