So tired! The boys went to bed at about 12:30am and woke up 6am...that time change gets ya every time! Needless to say Trey woke up GRUUUUUMPY! As anticipated, Trey feel asleep on the drive over to the hospital, woke up as I put him in his stroller, than down again-zzzzz
Good thing for us, he stayed asleep until we were called back for our visit with the doctor…one hour and fifteen minutes after our scheduled appointment time-ugh! Oh well, Trey woke up in a great mood :o)
10:30am -Our very first appointment was with Dr. Van Heest (orthopaedics-hand and upper extremity specialist). She first looked at Trey’s hands for signs of pain, carpel tunnel and contractures (stiffness), to which he had none.
She did however notice the different lengths of bones in Trey’s wrists and said that this was the norm for Morquio patients. She commented that Trey’s thumb muscles looked good and that he had very good motion in his hands and wrists. She pointed out that Trey had mild deposits (GAG’s) in his flexor tendons and that they didn’t trigger, click or catch…all a good sign thus far. Next, x-rays were ordered of Trey’s forearms, wrists and hands. As soon as the x-rays were displayed back in our examination room, the nurse said, “You’ve got SOME bones, Mr. Trey!” to which Drake responded, “Yeah, Trey is not a noodle!”
Dr. VanHeest pointed out that Trey’s bones were not typical (smooth and rectangular) but more ‘knob shaped’ or irregular. She said we would be looking for arthritic conditions in Trey’s future and suggested we schedule another appointment next year with a Dr. Taniguchi for nerve conduction and fine motor testing. If next year we find that Trey is delayed in fine motor skills we will begin occupational therapy. Next year we will also screen for carpel tunnel. Mike had noticed a young boy using an assistive device that was a type of a walker that both he and I thought looked pretty great to get around with…hummm, maybe something to think about to use in school as opposed to the trike (esp. since Trey may not to ride around school on a trike the older he gets). We also thought that as long as he can walk we would rather Trey use his leg muscles instead of any type of motorized chair or scooter.
2pm - With appointment #1 complete, we are now headed to meet Auntie Sharron and Uncle Cliff. We had a nice lunch and headed our opposite ways; us back to the hospital with Trey for our next appointment and them with Drake and Broc up to Granny’s house on the lake. Only two problems, #1-I forgot to take a picture (ha-ha) and #2 we forgot to give Drake and Broc their suitcase. Hopefully when Uncle Steve and Camryn fly in tomorrow to head up to Granny’s we will be free to meet them at the airport and give them the boys’ suitcase. One great bit of news…Trey did not show any signs of sadness as he has many times leading up to the “exchange”. We drove away and the moment Trey questioned when he would be able to go to Granny’s, Mike changed the subject with reminding him that we are going to tour the Metro Dome tomorrow.…Trey was all smiles.
Waiting for his 4 o’clock appointment, Trey was given his own concert of nursery rhymes-he was so embarrassed.
Height and weight time – according to today’s measurements, nothing much has changed in either; weight: 33.6pounds, height: 36inches
4pm - Our next appointment was with Dr. Walker (pediatric orthopaedic surgeon) to talk about our thoughts on the knee surgery Trey under went just a few weeks ago and also Trey’s hips, and ankles. Dr. Walker thought Trey’s knees looked great, had good motion and was happy to hear that Trey was healing so nicely and was not feeling any soreness, pain or discomfort.
After looking at the x-rays we brought from Dr. White in AZ, Dr. Walker said that from a surgery standpoint, everything looked good. Studying the x-rays in regards to the bones in Treys ankles, knees and hips, Dr. Walker commented about Trey’s bones stating that they were abnormal in texture, that they were broader than normal, wider and larger than most. Mike and I asked lots of questions about the recent knee surgery and were told that although the surgery may alleviate some hip pain it will not change the shape of Trey’s bones and the hip dysplasia he exhibits but that it may change the angle that is present with his ankles. We told Dr. Walker about the PT Trey has been doing and he felt it was very necessary to strengthen his knees and increase his flexibility.
Talking about the hip surgeries:
*Pelvic Osteotomy- this procedure corrects instability in the hip caused by a hip socket that is too shallow (acetabular dysplasia). The surgery description included cutting away bone, bone grafts, pins and screws. It was very graphic and sounded oh so painful.
*Proximal Femoral Osteotomy- this corrects an abnormal angle or twist (excessive femoral anteversion) in the thigh-bone (femur), which causes the knees to rotate inward. Without treatment, bones can move out of position (hip subluxation). And, I thought the above procedure sounded horrid, this one includes cutting the bone to realign and position and then adding metal plates and screws…my heart aches for our baby just thinking about these future surgeries that will consist of both procedures.
Dr. Walker talked to Mike and I about having these procedures done within the next couple years and of course we both are thinking the same thing…maybe medical technology will advance enough within those next few years to make this a lot easier on Trey, surgery wise and rehabilitation wise.
A light dinner and a refreshing bath…I am hoping Trey will be ready for an early bed time as we have a big day tomorrow.
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