Lil Miss Working Dog

Shelby did great today on paratransit, lying down on the wheelchair lift and holding on for dear life as it moved. On the return lift when the HandiDogs instructor supervised us getting on board, the driver told her they usually take assistance dogs on board first then the owner/chair user. The instructor laughed and told him he would "never get this dog away from her owner." LOL That's my Shelby girl! Class went much better than last week as well, I am happy to report.

I realized that my National Brain Tumor Foundation's Angel Adventure Day is one week after my return from next week's surgery in Baltimore. With everything going on between prepwork to put the house on the market, DH's surgery, my sudden surgery, my mom visiting, and Shelby's training, I haven't been able to put nearly as much into it as I was able to last year. I feel badly about it.

Pardon me asking but if you are able, would you be able to spare even $5? Neurological research is so critically important. It is a terribly underfunded area when it comes to grants and sponsorships, and brain disease is devastating. Even if someone recovers, so-called recovery is typically partial. We are left with permanent life-altering and often debilitating side effects. While we struggle throughout every single day, our families are left to cope and pick up the pieces. Nothing is ever the same.

That is why we need your help. If everyone found $5 to give, which is of course tax-deductible since it is a 501(c)(3), it would make an astounding difference.

While new discoveries funded by your help may be too late for some of us, it gives us hope and courage to get through the days simply to know our children may take advantage of wonderful scientific and medical advances.

There is a link on the right side of the page. If you follow, you will find the donation page--and my family's deep gratitude.

DH's minor outpatient surgery today for a sort-of hernia went fine. He's been going back and forth between watching television and snoozing. All is well.

We have our flights and hotel but not the rental car yet. A generous friend is trying to work it out for us to use her accrued points for the car; hopefully we will know tomorrow if it will work out. It is so kind of her!

There is so much to do I'm a bit flustered which I guess is why I'm sitting here instead of getting things done. Thursday is just a particularly exhausting day because of Shelby's class. I'll work on a couple little things tonight (I hope).

Surgeries update

They are going to do the surgeries the same week. The 2 Baltimore surgeons are meeting later this week to work out the details of all the work. The scheduler is working on finding dates where the pre-op appointment and testing can be done in the same week as the surgeries. They will call me next week with everything.

So, they are uncrushing the right subclavian artery for one surgery and the other is working on my brain's cranial nerves.

Fun :(

Update from doctor appt

We spent 3 1/2 hours with the 2 surgeons today, Dellon and Williams. I did some length testing there before I saw them. The results were pretty wonky as it turns out. I have a 70% loss of function of the left arm, and some on the right but it's not nearly as bad as the other side.

Dellon had a great understanding of Chiari. The 2 docs brought in another lady for her to watch and learn. Dellon drew a pic of the head and brain for her and explained about CSF being obstructed and the potential fatal impact on the brain stem, how it's a dangerous, life-threatening problem.

They feel this surgery will not be nearly as hard for me as all the others I've been through. I'll be admitted to UMH after surgery primarily because the 5 nerves and the muscle they will be messing with runs along a main artery so they want to watch for bleeds, especially with a history of hematomas and such. I'll have a drain as well but it will be removed the next morning.

Dellon asked where we were going to get dinner and drew us a map to his favorite Irish pub, Ryan's Daughter. Ok, so I grew up eating my catch, spoiled by yummy fresh food, as comes with growing up along a river and the ocean. I've got to hand it to this restaurant for having the BEST cod I have ever had in my life.

Unfortunately the snow that started sometime shortly before we woke up this morning picked up speed all day and thanks to DH's drink with dinner, I drove us back to the hotel. It's been 5 years since I stopped driving in the snow so it was a little unnerving and I thanked God the moment we pulled into the hotel parking garage.

It's been a busy crazy time since we got here since we missed our connecting flight, had to find the rental car the company didn't want to be bothered to exit the office and locate themselves, getting lost on the way here at 2 a.m. because of no lights near the tiny street name signs, blah blah blah. I had hoped to meet up with a friend and with a CM group but it's been nuts. :(

I check in at UMH tomorrow/Thursday at 8 a.m. for my 10 a.m. surgery. It should take around 1 1/2 to 2 hours.

I'll update again when I can. Thank you for your prayers!

Surgery info (updated)

The surgeon is gone for this month and apparently the majority of December but they are working me in the week he's there. My pre-op appointment is the 5th and surgery will be the 6th at 10 am. They're mailing me directions and scripts for basic pre-op stuff. My pre-op appt in Baltimore is going to be various thoracic-specific testing with Dellon and the second surgeon.

Baltimore surgeon update

He had some time so he called yesterday instead of next week.

He isn't sure he agrees with what others feel is the root of the problem, has other ideas, but neither of the possible causes is curable anyway. But he is confident he can fix this. At the end of the call he even told me I can have hope again!

A note was being left for the scheduler so I can get on the books without the confusion that happened this week. He normally sees people for pre-op appointments on Mondays but with the travel involved he said he'll have it worked out for a Wednesday afternoon. He can do the surgery the next day on a Thursday (they only operate Thursdays and Fridays).

So I should know a date Monday!

Dr D sounded very caring, and took his time. He wanted to know about the various brain and spine surgeries, how EDS impacts me personally, why I'm on disability, what I used to do, what my husband does, how old the kids are, and who will take care of them while we're there for surgery. He asked if I ever sent time in Baltimore, etc.

Wednesday

I talked to the RN again Wednesday and there are scheduling issues. So, next week's trip is off, but the surgeon had her tell me he's still going to call for us to have a talk, and they will book the surgery then. They asked me to go ahead and fax the test results and consult reports J and I went to pick up Tuesday so I took care of that within a few minutes.

I'm a little disappointed but also a little relieved. At least it's still going to happen, but this way we have more time to get things situated. We have been in a panic because of the trip prices. That won't change a whole lot I expect but hopefully I'll get more than a week's notice and maybe the cost won't be so high as last-minute like this.

I'll update after he calls.

Baltimore, here we come!

It's been a big day around here. I gave the info below to friends this morning and if they see this hopefully no one minds I'm putting it here. There are so many details I can't even think about trying to write it all down again!

The Baltimore surgeon is supposed to be the best in the country for the thoracic issue, the one I mentioned previously that lives in Baltimore but makes AZ trips every 6 weeks or so as they have an office here. I found out last week though that he no longer makes the trips here so they asked me to come there. I said that's fine, there's isn't a "network" with Medicare. Then they dropped the bomb on me and said they don't take Medicare, period. So his nurse wrote him an email about me and the EDS situation, asking if he thought if any of the other surgeons that still make the AZ trip could help me. That was Thursday or Friday.

They called this morning and the surgeon said forget AZ. He wants involved in my case directly and said to bring me out. They'll take care of the Medicare issue through their institute.

I shook about all day because he said get me out there--as in, next week. On the 29th. Of October. In Baltimore.

If I could I would have been bouncing all over the walls. The nurse said the surgeon is going to call me himself within a few days and discuss the trip and the surgery. He wants me to be prepared for what it will be like since it looks like I'll be out there for a week.

Did I mention if after the exam if he decides he can get this done safely, he'll do the surgery that week?

Ok, I admit it. I'm scared and freaking out and wish I could be DOING something productive. Booking the flight (they said wait for Dr and the nurse's next call so they can work on the testing schedule so I know when to be there and when it will be ok to come back, right now only have regular appt scheduled, not the tests), what to do with the kids, the dog, SOMETHING.