Tuesday, February 17, 2009

Catching up

We are here, nothing major going on...just busy.
So many things to talk about. I will try not to ramble on and save some things for a later date.
I will try to stick to 3 happenings.

Not this last Sunday but the previous one, I joined some gals for dinner. Two women, two amazing moms, two moms to little ones dealing with big medical issues. First, mom to Daniel. A son with an inoperable brain tumor. This mom, Laura, has been an amazing friend to me. She is such an encouragement. Her son has had more than two dozen MRIs. That's right, I typed it correctly, more than two dozen MRIs. Many chemo treatments and more doctors than they can count. Daniel so sweet. I finally had to chance to meet him. I had the privilege of reading him a book. Since he is extremely visually impaired, he does an amazing job navigating his world. He found his book, my lap and was ready to read. His sweet little hands felt my legs and would reach up to caress my face. Oh melt my heart! He sang some songs and talked to Brayden (or B as he called him). Please pray for this family. The tumor is stable, not growing but not shrinking.
A picture of Daniel, his daddy and Brayden.

The other; mom to Waverly and Oliver. Shannon and I knew each other at Taylor University only as acquaintances. She, her husband and children recently moved back to the NoVA area. I have been following her blog the past months. Her children have been diagnosed with MPS IIIA / Sanfilippo Sydrome. I cannot even begin to explain what that means so please check out their blog, Exploring Holland. Amazing story and amazing beautiful children. Please pray for this family, the disease seems to be moving fast and furious, they want to help their children in every way possible.

The three got together for dinner (Brayden tagged along because Jeremy had the other two boys out for the evening). The dinner was fun. All of us have similar but very different experiences with Children's Hospital, early intervention program, "interesting" doctors and nurses, school, questions and comments from complete strangers or loved ones, fears, joys... It was a wonderful time. We sat, talked and attempted to eat between all of the talking, for over 3 hours. We will be doing it again!

Brayden has help! Through the marvelous EDCD waiver, Brayden has been eligible for respite care. Staring in March we will have Shari Jane with us every day for 6 hours! This past Tuesday she came to help out for the day. It turned out to be a huge blessing that she was there...

Carter just left for a friends house. Luke was climbing in the car to head to preschool. Shari Jane was getting Brayden ready to load into the car and I was gathering all of the things that Brayden requires. Luke forgot his backpack and ran back into the house. Before he reached the inside, he crashed into the garage steps. Yes, he fell going up the stairs (nothing new for him, he did this a couple of years ago and pushed one of his baby teeth back up into his gums).

Luke needed some attention...medical attention. It was a gash on the bridge of his nose.

Brayden had an appointment in a building adjacent to the closest hospital. I dropped Shari Jane and Brayden off, then headed to the ER with Luke. To see the details of Luke's adventure check out the family blog.

It was a great day for Shari Jane to be with us. Brayden did not miss his appointment and I could fully tend to Luke.

Back to the GI doctor.

Brayden and I ventured to the Children's center in Fairfax. After a long wait and the power flashing on and off many times because of the insane wind in NoVA that day (I was praying I was not on the elevator when it happened), we finally saw the doctor.

No major changes. Keep the course. Brayden will still be feed through the J-tube, into his intestine. The doctor is not ready for us to try the formula in Brayden's tummy yet. He wants us to see a GI nutritionist to help maintain the proper calories and amount of formula. The goal is to increase the calories and decrease the amount of time that Brayden is hooked up to the feeding pump. Right now he is hooked up for approx. 20 hours a day. The GI doctors says that we can work towards 16 hours a day. Hooray! That is life changing for him. Less hours to be hooked up!

Brayden's tube is looking good despite the discoloration that has occurred from medicines staining the tube and the formula making it gunky - any tips on cleaning it would be appreciated. The GI doctor said that a G-tube/mickey button could be in Brayden's foreseeable future (the future meaning a year or so from now). That means Brayden could be fed into his tummy again. The G-tube/mickey button is much easier to use.

The doctor also said that we could attempt to feed Brayden, by mouth, some very thin baby foods in very small amounts. Before all of the feeding tube action was happening, Brayden was able to eat about 1/3 of the smallest baby food jar. We are hoping that he will be able to eat orally. Think about how much satisfaction we get from eating and tasting. He has not had that for almost one year!

That is all for now.


Shannon said...

I was excited to see your newest post. I assumed that "no news is good news". It was nice to make your blog. I can't wait to get together for another dinner. That really was wonderful. I am thrilled that your respite care is starting soon. I am still waiting on the final letter from Richmond. I am praying that we can find a wonderful caregiver.

Courtney said...

thanks for the update!!! so nice to hear good news...good connecting time for you with other moms, and help during the day. answers to MY prayers for YOU.

Anonymous said...

Hi I'm a mom from momswearingpuke.com. I saw your site and have been following you. I have a tip for Braydens j-tube. Owen(owen is my 8 month old medical mystery) had a g-j tube but now just a g tube. I used warm sprite. It should clean it well and help keep it unclogged.