The Thomas Crew

The Thomas Crew

Wednesday, February 27, 2013

Future plans for Gavin

I was blown away by the wonderful MDs at Radys children hospital yesterday. I was so pleased with all the attention to detail for Gavn. I wanted to update everyone on the plan! Yesterday we visited with endocrinologist, urology and nephrology. The visit with endocrinologist was very informative. We will be running many test to determine if Gavin has a endo problem like many believe he does. That doctor also referred us to a genetic specialist to help us better understand Gavin's diagnosis. Next was the urologist. For those that haven't been following we did all the test and procedures in Utah in order to prepare for major surgery once we got here. Yesterday we moved forward and have scheduled his first surgery on march 11. His second part of the surgery will be done 4 weeks later in April. The first surgery will be to reconstruct his right ureter and reconnect it to his bladder. He will no longer have a suprapubic catheter once this is completed. There are many risk to this surgery and I will be calling on lots of prayers that day. The major risk is that his only kidney will completely fail immediately following surgery. He will be in the hospital a few days and followed closely by the team. If this happens he will be put on dialysis and transplant list. I met with the transplant team yesterday and I'm confident in the care he will receive. The risk is very real and scary but surgery needs to happen so we Pray! There is also a chance since his bladder has never been used that it will not work. If this happens we will have to use catheters to drain his bladder. He will have another surgery after that to fix his hypospadias as long as his bladder is working correctly. Now on to nephrology. We don't know yet if he has had decline in last month. We are waiting on lab results. It is going to be hard to determine Gavin's kidney decline until we can monitor labs over the next 2 months. We don't know exactly how much time we have right now. We are praying everything will go ok with surgery and we can preserve his kidney function as long as possible.

Today I am sitting in outpatient procedures waiting for Gavin's BAER test to be done. Hopefully we will have those results to share in the coming hours. Thank you for all your continued prayers for my Bulgarian Prince!

Saturday, February 23, 2013

Homeschooling and the upcoming week of events...

Lets talk homeschooling! We have decided as a family to try homeschooling our children. Bradley has been out of public school for awhile now. We have submitted all the documents for A private   homeschooling program in California. The laws are stricter in Cali then Utah. I appreciate all the guidance from all the other homeschooling mamas. If you have some wonderful words of wisdom please send them my way. If your in SoCal and belong to a homeschooling group pass that along too. I am excited to start this new journey with my children. Especially my oldest Bradley. He is eager to learn but struggling with basic concepts of reading. That is our first major goal to overcome. Kaitlyn is working on a preschool program and Gavin is learning sign language. I hope I can guide my children's hearts to love learning and to love Jesus.

This week is going to be a BIG week for Gavin. We will be seeing 4 new specialist at Radys children hospital. We are hoping to develop a plan for his urinary system. We are also seeing a endocrinologist to better understand Gavin's congenital abnormalities. Gavin also has his sedated BAER test on Wednesday. He has to be sleep deprived for the procedure and will be required to only sleep 4 hrs the night before. Please pray we can accomplish this and get the test done.

Monday, February 18, 2013

Busy Busy

Hello everyone! Sorry I have been MIA for so long. The last month has been Crazy since we got home with Gavin. We received military orders and are now in our home state California. The house is still 50% in boxes but with 4 kids and one on the way things take time! Yep if you missed that last part we have a new one on the way!! A BABY BOY!!!! We were secretly hoping to give Kaitlyn the sister she longs for but I think this is Gods way of saying remember he's in control and will ultimately determine our family size :) It's kinda comical once you have a large family how people think they have a say in your family size. I have had to bite my tongue a few times and remember family, friends and strangers generally think they have your best interest at heart. I have had a few that have been very supportive and realize we will do what's best for us :)
GAVIN  lets talk about my handsome Bulgarian Prince!!! Yes I mean that with total sincerity. Bulgarian Prince is his name and it will stay forever. I can hear his little feet up stairs right now waking up his brother and jumping on his bed. He has changed so much in the last month. Those first two weeks home where more then I ever expected. They required a ton of patience and prayer. I don't think Gavin had ever heard the word No and his behaviors were out of control. Top that with a new diagnosis of moderate to sever hearing loss and we were lost with communication. I think it's important to be "real" here and not just say all is perfect in the Thomas home. I have hundreds of readers on this blog and about 50% of those are in the process of adoption or have finished. I think its very important to be prepared for your homecoming and the unknown of medical problems that can come up. Gavin is a true blessing to our home and he is worth it!! Absolutely worth it!! We cannot imagine our lives without him. In the short weeks he has been home our children have learned patience, friendship, love, determination, special needs, disability, communication and even how to care for catheters and medical procedures. For those people that thought Gavin would take away from our children I stand by my comments that children are truly a blessing and bring lifelong lesson and LOVE to a home. Whether you have two or eight children. I have had a lot of comments regarding Gavin's medical problems since we got home. Gavin has been seen by lots of wonderful specialist. It has been difficult since we had to move after establishing a good team. His catheter has been changed and he now has leg bag system that's working great but is still temporary. Gavin requires major surgery to fix and reroute his system to work correctly. We are hoping to have this done in March once we are settled into our new home. His kidney failure progressed since his last labs in August and he is in stage 4 renal failure. He's taking medications every day and Dialysis and transplant is in his future. We are just hoping to protect as much function as he has right now.  As for his hearing we need to do one more test to see if a hearing aid or implant will help. We are praying we can get him hearing. We were not aware of Gavin's hearing problems prior to pickup. We are all working together to learn sign language and teach him.
As I said before we can't imagine our lives without him. He is a Thomas and has bounded beautifully with all members of the Thomas house. Please continue to pray for his health and for his new doctors here to determine the best routes for our very special Bulgarian Prince!