Wednesday - A Full Day at the Clinic

I'm writing the blog a little early tonight as Gracie is sleeping and I'm not sure I'll get a chance to do so later. We had a full day of appointments at the clinic, with no time for a nap.

Our day started out a little rough with some tummy problems, to the tune of having a blow out diaper that made it necessary to change our clothes at the exact time we should have been in the car on the way to the clinic. We cleaned that up and zipped to the clinic and got there in time. Our first appointment was with Dr. L in the Sleep Clinic. We answered alot of questions and talked about Gracie's sleep habits and our concern that she may have sleep apnea. We are scheduled to enter the sleep clinic on Sunday night, where Gracie will be hooked up to a ton of monitors and she and I will sleep there all night. We will then meet with Dr. L. at 11:30 a.m. on Monday to get the results.

Then Gracie and I went to the patient cafeteria for lunch. We were joined by a little boy (3 years old) named Kyon and his mother. It was great to meet these two individuals and Kyon had me in stitches most of the time. He was very curious about why Gracie was in a wheelchair and why she didn't talk, so I explained things to him and his mother was awesome about explaining as well. At the end Kyon gave Gracie a big hug and Kyon's mother told us what an inspiration we were. Wow -- who would have thought?

We did a little visiting while we waited for our next appointment - a tympanogram (sp?). This was to tell us if Gracie's tubes were still in her ear drums. The tech was AWESOME. He was the same one that did her last hearing test and he had her dancing. She did fuss when he put his "tools" in her ears though. She hates having her ears looked at.

Next we met with the ENT surgeon, Dr. D. Gracie's tubes are out of the eardrum, but still in the ear canal. We were thrilled to hear we had some options, one is back to the OR to take out the tubes and clean out the wax build up, two is to do a wait and see approach and follow-up again in 3 months. One ear is clean, the other (the one she pulls at) has wax build up and it would be hard to tell if she has an ear infection. Our third approach would have been to hold her down and have Dr. D. take the tubes out in the office. This would have involved alot of ear manipulation and more than likely an army to hold her down. We opted for the wait and see approach for now, with a follow-up in three months. We can always change our mind should we feel it necessary.

Then there was an hour plus wait where we had some drinks and snacks. Jeff was so kind and went to find me a Diet Coke, my drink of need. When he came back with it, Gracie saw it and said "Coke". I had no clue she could identify Coke products. She also saw someone microwaving their lunch today and said "cook". That's a word she has been imitating at home, but I hadn't heard her come up with it on her own prior to today.

Next we went to visit Dr. N. in neurology. This is on the same floor as Gracie's PT and OT appointments, so she was thrilled to see all of her friends. She took Rachel for walks around the floor, while Jan, another clinical assistant would pretend to chase her. Then her physical therapist Leslie came out to get another patient. Gracie, of course, thought she was coming for her and got all excited. Leslie was so sweet and asked the other patient if they would wait just a minute so she could say hello. Leslie and I explained that today wasn't her day to play with Leslie, but we would do that another day. It about broke both of our hearts when she signed "please".

Gracie loves, loves, loves Dr. N. Dr. N. was thrilled with her progress, was happy to hear that she is just beginning to put two words together. We had questions about the effect of anesthesia and our biggest question had to do with recurrence of her infantile spasms and were we out of the woods yet. We were thrilled to hear that it is extremely unlikely (as in very very rare) that Gracie would have a recurrence of I.S. Jeff and I bothed sighed in relief at that. Her age is with her on this. Dr. N. is excited to know that Gracie will be going to a couple of days of preschool in the Fall and felt we were really tapped into all of the right therapies. As always, she was very pleased with Gracie's social skills and really felt that she is doing so good overall. Although we know she is delayed, Dr. N. thinks she is making beautiful progress for a two year old. At the end of our appointment (where Gracie sat on Dr. N's lap for most of it) Dr. N. asked Gracie if she could pick her up. Gracie had no objections, matter-of-fact she put her head on her shoulder and snuggled in. Dr. N. carried her all the way out to the waiting room and she wasn't too sure she wanted to come back to mom.

Gracie fell asleep on the way to the ramp to go home. As I pushed her in her wheelchair, her head was resting on her knees. She fell back asleep in the car, woke for a moment when we got home. We had to wake her to get her seizure meds in her, but she fell right back to sleep. I think she is in bed for the night. No nap + busy day at the clinic = very tired girl. Come to think of it, that equals a very tired mom as well. I think daddy is feeling the same way.

Love,
Lisa, Jeff, and Gracie