Travis and I had an uneventful trip back home today. We've been blessed with good roads (a few slick spots and wind here and there) and good weather for our trips.
We had a filled morning and early afternoon on Friday, Travis was more than ready for the appointments to be done. He's to the point now that he knows when he will have a blood draw and says "No blood" or "No poke" on the way there. Friday he was still pretty upset in the lab. Poor kid, I don't blame him. Through all of this, he does hold still while they are getting blood. Then again, we go get breakfast when he's done and he picks donuts. ;)
His appointment with Dr. Viskochil went pretty good, Travis was ready to be done with everything by the time that exam was done. Travis does have some side effects showing up in his blood work, but nothing is out of the normal range. The changed values are higher/lower (depending on what they are looking at) when compared to blood work done in November before T started the rapamycin. Dr. V wants to see if we can lower the cholesterol by modifying T's diet and not having to use medication. Nothing alarming and we will see what the values are from Feb's blood work. We did hear that Travis' lipids came down some from the elevated values in Dec. Yea. Thankfully there are no mouth sore, nausea, or other side effects of that nature. Luckily nothing unexpected has shown up and what has shown up is not alarming.
Travis cooperates well with Dr. Viskochil, and he's great with the kids and parents. He has Travis help "mark" T's leg when the dr measures the circumference of the thigh and calf. They measure the same distance up from the knee each time to see what's happening. However, the real answers will come from the volumetric analysis done on T's MRI next month. The results from that analysis will determine if this drug is having any affect on Travis' plexiform. If the plexiform continues to grow at the faster rate >= 20%, T will be taken off this trial since the medicine isn't working. We will cross that bridge when we get there.
When Dr. Viskochil was done with his exam, Travis was done with exams in general. Unfortunately for the dietitian, that is when she came in. She gave us simple diet change suggestions to help lower the cholesterol and said that he's eating pretty good for a 3 year old. Basically these are some simple substitutions or additions to his diet. Thankfully the research coordinator was in the room also to help entertain Travis so I could talk with the dietitian.
Travis was glad to leave the exam room and push his stroller down the halls to go pick up this month's rapamycin. He got 2 bottles this time around due to his increased dosage...and probable dosage increase to come. The blood level was below the target range from Monday's blood draw and we were told that the study may want to increase his dose again. We found out late yesterday afternoon that Travis' dosage will be increased again. Our hope is that T's level is back in range from Friday's blood work and the one that he'll have on the 14th.
We had a quick lunch in the suburban and headed over to Shriners for his appointment to be fitted for a clamshell brace. It was decided that due to T's tibia issues and the commonly seen incomplete healing of fractures in people with NF, that Travis should have his left tibia in this orthodic. The clamshell brace will help prevent fractures from direct blows to the tibia. Thanks to Dr. V and Heather, we were able to get an appointment with orthodics at Shriners for that afternoon. Something happened along the route of communication and we hadn't heard that the clamshell brace was a "go".
T did great while the guy made the mold of Travis' left tibia and foot. Once he realized he wasn't having any more blood drawn, he could have cared less what the guy did. We went to the wall that has all the different options of colors/designs on the brace and T picked out a blue fish theme. It's actually a pretty neat looking design. I wasn't quite prepared for the scope of this brace though. It will extend on the back of his leg just below the knee, around the heel, to the middle of the bottom of the foot. There will be another piece that will be strapped on the front to protect the tibia from direct blows. The PA we saw at Shriners in October was out of the office when Travis was getting fitted for the brace, so we will know more next week what day T will get his brace when we are there next month. All along with his shoe lifts, we've been able to get him regular shoes where the lifts can be added. We have to take his next size shoes with us next month to see if they will work with the brace. Otherwise, we may have to look at special shoes for him. We are so fortunate to be going through Shriners for these orthodics.
After all the scheduled and on the fly appointments, we had another time critical event Friday night...the Texas A&M football game. I found out that the Utah Texas A&M Club was having a watch party in the theatre room where the Utah Jazz practice. I'll have to post the picture of Travis watching the big screen later. That was a wonderful experience and in Aggie tradition, we were welcomed with open arms (as were the Ags from Texas that were skiing in Park City that were there too). We made some new friends and it was great to be able to watch the game with fellow Aggies, too bad the game didn't end for us as good as it started.
We had a safe drive back home today and arrived ahead of the next weather system forecasted to arrive early Sunday morning here. It's nice to be home.
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