Pictures and the video posted all about the ride and I wanted to share. It is really an amazing event. Over 220 motorcycles on the road with police escort, a trailer and team to help the motorcyclists, and roads closed down for this ride.
You can see Stephanie at 1:57 and 2:19 in the video (big yellow Harley, with Team el Tortuga flag on the back)
We are so thankful to those who gave and Stephanie for setting up the Team el Tortuga Brayden!
A long morning to check his bones. Headed into DC for the Children's bone health clinic.
Traffic was miserable and there is still that awful detour to get to the hospital.
Before meeting the doctors and having tests, it was time for height and weight, just like any other time. For quite awhile Brayden has been at 42 and 42. 42 pounds and 42 inches long. I was expecting some growth but when the nurse said his weight, I asked her to repeat it. He weighed in at 54 pounds...that is one chunk of love. He also grew 3 inches.
After that, came the waiting for Brayden's turn with the dexascan to check his bone density. Then off to take x-rays to get another look and make sure there were no new breaks or fractures. It was finally his turn for the scans and x-rays, Brayden did a pretty good job cooperating with the awkward positions and being completely still (with the nurse and I holding him still...he is one strong little thing) for the dexascan. Then to x-rays, and had to sit him up against the board...talk about a workout for all.
Back to the room and we wait for the doctors. They finally arrived and came in to tell us the first round of dexascans and x-rays did not give them the best pictures so we had to go back for another try. Thankfully the second round provided better pictures/view (cause there was no way Brayden was going to do those again in those awful awkward positions). But he was wiped out and ready to be done with everyone.
Hours since we arrived, the team of doctors reviewed the results and Brayden's bone health is still extremely poor, still not-the-chart poor. Thankfully there has been some improvement
since coming off the keto diet but more needs to be done. And thankfully no new breaks.
In a few weeks, the team wants to admit Brayden for the day (should not need overnight) to start an infusion, Pamidronate. After the initial infusion, he will go back every few months for another infusion...which is outpatient after the first infusion. They do not know how long he will need the infusions, he still has many more years to grow and a long way to improve his bone health. Each time he gets the infusion, the actual infusion takes 4 hours.
In addition to the infusion, it looks like they will be adding a couple of medications as well, but they haven't prescribed those yet.
We go back to the bone health clinic every 6 six months for repeat dexascans and x-rays.
After meeting with the doctors, we were still not done (while I am frantically trying to find people to pick up Carter and Luke at their camps because I did not think we would be at the hospital for the entire day). The doctor handed us a lab sheet, we needed to go get labs...as if Brayden has not been tortured enough, lets add a blood draw.
The lab in the hospital was packed, standing room only. Brayden was finally called and the tech got him in one stick (so thankful for the one stick).
On our way out, we ran into a sweet little girl from Brayden's school (adorable thing that I just want to squeeze). And would you believe she is starting the exact same infusion process in a few weeks as well. I know that mom and I will be talking...
After a long and hectic last week of school Brayden was ready to head to Jill's House. I, on the other hand, did not plan this one quite so well. Jeremy was out of town all week, Carter had 5th grade something many nights, I helped with the carnival and hosted all of the 3rd grade for a pool party...then had to load Brayden and all of his gear to head to Jill's House. I was hot and sweaty and stressed.
Thankfully Jeremy made it home, literally jumped from his truck into my car to head to Jill's House with Brayden. Carter at his pool party with friends and Luke hanging with his friends.
Headed in and I got Brayden ready for bed with all his meds and food. Hugs and kisses goodbye and he was exhausted from the week and his eyes could barely stay open any longer.
The weekend went well except for a call concerning his seizures. Apparently he had two small episodes of not breathing seizures. Thankfully only lasting a matter of seconds, not turning blue but enough to alarm the staff and give us a call. And thankfully no more episodes.
As always, Brayden loved the pool (asleep again), outside walks and music.
One of our favorite parts of his Jill's House stay, is picking him up. We miss him so much but that is not all. He "talks" all the way home, very enthusiastically telling us all about his weekend. It is the best thing.
For the past few years, I have helped coordinate the last day of school carnival at Carter and Luke's school. With the chaos of the last week of school Brayden did not go to school for the last day, instead he came with me. He did not make it through the award ceremony in the morning but was happy to be outside with all the kids for the carnival.
Brayden finished kindergarten. He might not have enjoyed every moment of school but he went quite a bit this year. Monday-Friday, 9:30 a.m. - 2:30 p.m.
Because of all the end of year events at Carter and Luke's school, I could not get Brayden back and forth to his school. So he ended his school year a day early, and there was no protest for that on his part. He did receive his Completion of Kindergarten certificate...trying to get him to hold it on his own and he showed his he was not feeling like working and ready for summer break.
Over the years, Brayden has been on many medications. Some not so typical medications or needed to made a certain way in order to give via feeding tube or because of the ketogenic diet. We has always used a local specialty pharmacy. The first has to restructure so we changed to another local one, Leesburg Pharmacy.
It has been the place that has that world local feel, where they know your name and go above and beyond to help. We are at the pharmacy at least once a week to fill Brayden's many medications (to bad insurance will not let us fill all at the same time, it would make life so much easier).
A letter came in the mail that we were going to close up shop except for their compounding center. Yikes, find a new pharmacy?!
All their records where switched over to chain store, in the same shopping center.
The transition has been rough...not running his insurances properly (every time), giving us the incorrect number of pills (30 less that what we should get) and then the problem with giving the medication.
Brayden gets all of his meds via tube, the prescriptions even saw so. The pharmacy does not have nor can gets us syringes to give him medications. Brayden's feeding supply company cannot issue us syringes that small. The pharmacy's resolve was to measure in a cup...problem when you are measuring to the .25 ml...and I am not that talented to measure things that meticulously without a syringe. And then how am I supposed to get the liquid out of the bottle to measure those little amounts.
We need the little stopper that goes in the bottles and syringes that fit in it to give the medications.
You would have thought I asked them some crazy question when asking for those, as if they have never heard of it. Brayden cannot be the only one who needs those.
I surrendered to the fact that they could not help us so I needed find some on my own. I ended up purchasing (for too much money) the supplies and way too many hours wasted. And now need to find a new pharmacy that can meet all of Brayden's medication needs, syringes and all.