Power Chair, Eye Exam, Emotions

Friday morning after physical therapy, Travis saw the guys at the wheelchair / seating clinic for a consultation to see what would work best for Travis on long distances. Travis currently uses a stroller, but we would like to see him independent of someone pushing him (and he will probably want to ditch the stroller soon). We wanted something portable, Travis could operate without tiring (joystick steering), yet we could push him if needed, and something Travis would like to use. The great thing about the guys at Shriners is they can customize T's seat, rails, speed, control sensitivity, etc. to T. They are amazing! This option disassembles into 4 pieces that can fit into our vehicles. So many emotions related to this decision, I need to remind myself that this is a tool to help Travis get around in a variety of environments. This will allow T more independence at stores and places, thus developmental milestones he can achieve.

The GoChair T tested out on Friday, T chose a red one for him.

We spent lunch at home before Travis' ophthalmologist exam on Friday afternoon. We heard good things about this group from other doctors and patients. Travis was originally scheduled to see Dr. Hoffman in March, but T was too see for an eye exam that day...another 2+ month wait and it was Friday's appointment. Dr. Hoffman noted Lisch nodules in T's eyes, those are harmless pigmented bumps on the eye's iris commonly seen in NF1 patients (another NF clinical diagnoses check box checked off...5 of 8 and you only need 2 to obtain NF1 diagnosis). They dilated his pupils to check the optic nerves, fortunately both nerves look great! :) Dr. Hoffman will review T's brain MRI from July '11 and unless there is something there that concerns the doc (I don't think so), T will see that eye doc every year. :)

Lots happening this month with medical planning and getting T ready for Kindergarten. So many emotional highs and lows for me. I'm excited to see all his progress and the smiles from him when he accomplishes a task, the smiles and pride brighten any day. We are planning a vacation this summer and I'm getting copies of T's medical records so we have them on the trip if we were to need them, hopefully not. Another reminder of all T's medical issues (I know many have it worse) and all the non-straightforward complications of NF. T's made great progress in his PT and OT sessions this month, yet he has more to go. There are days where I want to be "Mom"...not PT mom, not OT mom...regular "Mom". I should accept that I have to be PT mom and OT mom and figure out a way to balance things. Many hours during the week will be devoted to PT and OT homework, and trying to figure out how to make this "homework" fun on a daily basis and where he doesn't think of this as homework (eliminating some meltdowns, battles, and yelling at mom).

We decided to have Travis attend the same elementary school as Nolan and Barrett in the fall. We worked with the school to determine T's Kindergarten teacher now (opposed to August) and accommodations for Travis are being installed before the end of this school year. Currently Travis has an IEP and we are trying to determine if he needs to remain on an IEP or if the 504 plan would be all that T needs. We mapped out a list of T's accommodations at the meeting with his teacher, school district PT, and school counselor. Also at this meeting, we received a letter from the school district OT that had some wording I'm trying to get clarification (for my understanding) that concerns me. T will continue to see an OT outside the school district every 2-3 weeks during the summer.

We're looking into grants to assist in obtaining an iPad for T to help with his fine motor delays, if anyone knows of a grant let me know. We're also checking to see if T qualifies for disability.

Thank you for the continued prayers for Travis and our family. I keep reminding myself our family is where we need to be, where He placed us, regarding T's medical care, especially on the hard emotional days lately. The distance would add more components to the decisions and appointments that can be complex already.

Travis - NF Hero of the Day

Travis is the NF Hero of the Day on the blogpage for Team Tori. Interesting coincidence they featured Travis today since Scott's birthday is today.

Team Travis will be walking again at this year's NF Walk in Salt Lake City on Sat, Aug 25th. Join Team Travis in person or thoughts as we walk another year.

World NF Awareness Day

May 17th marks World NF Awareness Day. The month of May corresponds to May being NF Awareness Month and the 17th corresponds to NF1 being located on chromosome 17, Travis' geneticist was part of that discovery. More genetics details can be found at What is NF?.

Thoughts from a 4 Year Old

Most of Travis' conversations are pretty predictable...cars, racing, stuffed animal kitty, brothers, breakfast, etc. Sometimes he gives us glimpse into the other areas he thinks about. This morning on the way to take the kids to school Travis stated, "I don't want to die in Salt Lake City."  *tears*

Not quite sure where that thought came from and it took me quite by surprise. Our cat died last year, my grandmother died earlier this year, and Easter was last month, so he's familiar with the thought of death. Travis also wanted to know when he'll die. The connection of death and that he'll die one day was not something I thought I would hear when I woke up this morning. Travis knows he has his turn at the doctors' offices, school, therapy, etc. I don't know if this is an extension of his turn to do things.

Today was one of those moments where our kids show us the wisdom beyond their years.

Great News Regarding Travis' MRI Volumetric Analysis

Dr Viskochil heard back from NCI (National Cancer Institute) and the NCI doctor "could not identify a change in the tumor size" on Travis' MRI volumetric analysis. This is GREAT news!!! Praise God! The local neuroradiologist also could not detect a change. Dr. Viskochil also focused in are areas of Travis' tumor and felt the same way. Yes, Yes, YES!!!

Where we go from here...Travis will have another regular MRI in July and that MRI will be sent to NCI for volumetric analysis. The July MRI will provide a look into what the plexiform has done with a full 3 months off of the rapamycin. (Travis' previous MRI was Jan 5th and T stopped taking the rapamycin on Jan 11th, there is some time that the rapamycin remained in his system even though he was not taking the medicine.) Due to the great results, Travis will remain off the rapamycin.

Travis saw his orthopedic team at Shriners yesterday for a regular exam. Travis continues to make great improvement in his walking, balance, endurance, and maneuvering stairs, especially in the last several months. Mike Pond examined Travis and decided to have 2 x-rays done, one of the tibia and one of Travis from the waist down. Travis' valgus deformity (knock-knee) on the left side worsened over the prior 6 months; however, due to all the recent gains and improvements they will continue to watch T and not perform surgery at this time. Travis' right hip has gotten a little worse, but he is still doing good. The right hip isn't traditionally formed either, this has been mentioned before at orthopedic appointments, but it is more traditional than the left hip. Shriners also took clinical pictures to add to his chart, will be easier to remember what he looks like on the outside now. Travis returns to see the orthopedic team in 6 months.

We continue to enjoy the great memories from this past weekend. :) We continue to move forward with getting Travis ready for Kindergarten this fall. He is so excited he will attend the same school as Nolan and Barrett. We are working with the school to determine his teacher before the fall so we can work as a team to get the necessary accommodations in place.

Thank you for all the prayers and support for Travis and our family. God continues to work His miracles in our lives and guide the direction of Travis' medical teams. He placed us in contact with these incredible professionals and directed our move to Salt Lake City.