We flew out to Colorado for Easter... it was great to be able to see family and friends. Mylee had a hard time on Easter Sunday with her sensory issues. It was quite stressful for mom and dad... we made it though! Attached are pictures from our weekend. WARNING: Lots of pictures!!
We took Mylee to Denver Children's hospital for neuro appointments. It is an amazing hospital!! We started out on the second floor seeing a new neurosurgeon. We knew what he was going to say before he even said it! Mylee's initial decompression surgey was a success. She currently does not have any compression on the brain stem. He believes like everyone else that she may be experiencing some other neurological issue. Or it is quite possible the initial compression from her Chiari may have caused damage. If this is the case, we can only continue therapy and hope that she doesn't start to compress again.
Before our session ended with the neurosurgeon we requested Mylee be referred to Denver's intensive feeding therapy program. We needed her referral in order to even get into to seeing a speech pathologist or medical doctor. It was a long shot, but we thought we would ask to see if we could be seen that very same day. The staff at this hospital are amazing!! We headed to lunch and not more than an hour or so later, Dave received a phone call saying we had an appointment with Dr. M (head of the Rehav department).... He believes Mylee will be a great candidate. However, it will depend on the outcome of her next MBS (Modified Barrium Swallow Study)... this test is scheduled for May 20th. If the results are good enough to start any sort of feeding therapy we will be enrolled into the program. We could be in Denver for a few weeks of intensive feeding and then return home to work with her local therapist. This is all up in the air at the moment. We will know more once she
has her MBS.
After seeing Dr. M, we raced up to the fourth floor of the hospital to our scheduled appointment with a neurologist. This doctor was amazing and so was his nurse practitioner. They listened to all of our concerns. He agreed after realizing that she is now almost 17 months post decompression that we may be looking at another neurological disorder. He ordered Mylee to have some blood work done for metabolic and neuromuscular type of disorders. This is a baseline of test to determine which direction the doctor should go in. We won't have these results for several weeks.
Wow, it was a crazy last couple of days in Colorado. We made it home safely to AZ. And since we have been home the days have been just as busy. They are beautiful ones though, the weather here is amazing! Mylee jumped right back into her therapy routine. We also had a playdate with the twins on Thursday. Friday we met daddy at United Seating and Mobility. Mylee is being fitted for another walker. We have picked out two that we really like. We like the Snug Seat Crocodile Gait Trainer:
www.snugseat.com and the Rifton Pacer Gait Trainer:
www.rifton.com. We will have a final fitting with her physical therapist next week. I still can't believe Dave and I will be paying for this out of pocket. We thank GOD everyday that Dave has such a great job....!!
We are getting ready for Mylee's transition meeting at the school district next month. We will meet with the districts psychologist and Mylee's developmental specialist on May 14th. The first meeting with mostly be an introduction. We will find out which school she will be attending and a brief synopsis of where she is developmentally. The next meeting I believe will be mostly testing to see where she will be placed for sure. We are really excited!!
We are also getting ready to start planning Mylee's 2nd Annual
Miracle Race for Mylee Grace. I am really excited to get started. We are hoping this will be an even bigger event than last year! I will have more details in the next few weeks. We will be donating to both
ASAP and
Miracle Wish for Chiari again. We will also be registering to go to camp in June. This will be Mylee's first camp experience.
Miracle Wish for Chiari has provided an opportunity for 32 familes to join them at Victory Junction in November. Please visit:
http://www.miraclewishforchiari.com!!
xoxox
We heard from Denver Children's hospital this morning. We should be getting the necessary paperwork sometime next week to get Mylee ready for the intensive feeding program. We have her scheduled for her modified barrium swallow study on May 28th in Denver. They are requiring her to have this procedure done there instead of here in Phoenix. We will then meet with the team of speech pathologist and therapist to discuss the intense program for Mylee the very next day on Friday, May 29th. We have already been told she wouldn't be enrolled into the program until probably the end of the summer or early fall due to an already existing waiting list. However, the hospital is willing to work with her current therapist here on a daily basis to get Mylee ready for the program. We were able to get Mylee's remaining blood work up completed this morning. It took a few days to be able to coordinate our local hospital here and Denver Children's to be able to get it completed, but we did it! Mylee is a trooper - again no tears. I think one of the nurses was so impressed she left and came back into the room with two new stuffed animals for Mylee.
