Tickets booked for 1st Surgery in Chicago!

Brayden and I booked our flight to Chicago for his 1st surgery July 19th.  We will be flying to Chicago on Sunday the 17th, his surgery will be on that Tuesday.  Then if everything is good, we will be driving to Iowa to spend time with family & friends before coming back to Chicago on Aug. 1st for the 1st fill on the expanders.  I am happy the flight is booked, one less thing to worry about.  Now still trying to figure out where to stay.  Luckily Brayden & I won't be alone and my parents will be driving to Chicago to support us.  Will be so nice to have them with us!

1st surgery booked!

We just booked Brayden's 1st surgery, it will be July 19th in Chicago with Dr. Bauer.  This is when they will be putting in 2 expanders in, one on each side.  He will leave them in until October 10th. Then we will let his skin heal for 4 months before the 2nd round of surgeries. Dr. Bauer thinks Brayden will need 3 rounds of surgery. 

Now we are busy trying to figure out flights and where to stay.  If any of you have any connections in Chicago, please let me know.  

When I go in July, we will have to be in Chicago for 10 days because they will do the 1st fill and show me how to do it, then after that it will be Geoffrey & I doing the fills once a week.  

MRI Results are back! And Nevus gathering

Dr. Price who ordered Brayden's MRI got his results back and it came back completely normal! What a relief, we were so happy to hear the good news.  We didn't want anything else wrong with Brayden.  But we still need to send the MRI results to Dr. Barkovich in San Fransisco to get a second opinion...he is the top doctor and knows what to look at when he see's the MRI.  So still keep Brayden in your prayers that his results are normal.

Over the weekend, Brayden did have a high temperature but it went down on Saturday finally.  Today he goes for his 4 month check up, so the doctor will look him over to make sure he is healthy.  He will also get his shots, poor baby...hates those. So glad daddy is taking him to that and not mommy, I hate to see him cry!

Yesterday we went to a Nevus gathering in Phoenix.  It was so nice to talk to other parents and adults that have nevus.  We leaned a lot and even Dr. Price who is a dermatologist pediatrician at the Phoenix Children's hospital attended the event. This is the dermatologist that Brayden goes to. Dr. Price was there to talk about a newish laser technique that they have been doing for 2 years now. So we learned a lot about that and we can start that when Brayden turns 6 months. We are thinking of doing the laser on all of his satellite spots, which are the small nevus on his legs, arms, etc.

Now we are thinking about going to Chicago to have Brayden's tissue expanders done there with the top Dr. in the world....Dr. Bauer. I emailed Dr. Bauer this morning for a consultation about Brayden and sent him pictures of him. So I will be waiting to hear back from him. So if everything is good, we would like to go to Chicago in May for his 1st surgery. If we do that, we will have to figure out where to stay, flight and etc....going out for state for surgery will add up quickly and especially if we have to travel there again in July to get the expanders out since you have to leave them in for 12 weeks. Then let the skin heal for 2-3 months....then go back in Nov or Dec and then Feb or March again.

I think for the 1st trip, I will be going with Brayden alone that way, we don't have to buy 2 plane tickets and both of us taking time off of work.  Since Chicago is close to Iowa, my family will come to support Brayden & I.

This is the latest with Brayden....will keep all of you updated once I know more

On a good note, he is holding his head up good now, so this week, he will be trying rice cereal for the first time :)

He is growing so fast!

Visit to the Dr & MRI

Brayden went to the doctor yesterday to meet with the surgeon he meet with when he was a few weeks old, Dr. Singh.  She told us that if Brayden does the tissue expanders with her, she wants to wait until he is 17-18 months and not 6 months like she told us before.  She said she wants to wait that long, that way his bones and organs are more developed by then.  Great....we were expecting to start his surgery in May.  So now we have 3 options, we look in to going to Chicago to get the surgery done with Dr. Bauer who is the top surgeon with nevus and tissue expanders or we wait until he is 17-18 months and go with Dr. Singh who is locally here in Phoenix or we look into laser treatments. 

We are now in the process of looking into the laser treatments and also using Dr. Bauer in Chicago and seeing what we feel is the right thing to do for Brayden.  On Sunday we are having a nevus gathering here in Phoenix, and Dr. Price will be present and she will be talking about the laser treatments.  So we will be asking her lots of questions about that.

Brayden had his MRI today, he did good and woke up right away.  When he got up they gave him water and he didn't want that.  So Geoffrey feed him his bottle and he was a happy boy and even let out 3 big burps! The dr said he might be a little fussy for the rest of the day, but so far he has been fine. 

Now we wait for the results to come back and we send them to a specialist in San Fransisco and he will look it over to see if Brayden has it on his brain.  We do not want that, so please keep Brayden in your prayers

Having appointment with surgeon & MRI

Brayden will be meeting with Dr. Singh today for his 4 month check up.  We have a list of questions to ask the dr about his up coming surgery in May when he turns 6 months.  If everything looks ok with Brayden, we will have his 1st surgery in May. 

Tomorrow Brayden will be having a MRI done.  The 1st time he had one, they only did a MRI on his lumbar spine.  So this time around they want to do a whole body one and make sure he doesn't have the nevus on his brain.  His apt tomorrow is at 10 am and he can't eat after 5 am.  Poor baby! I don't know how we will do that, when he gets hungry, he's hungry and he wants to eat right now....just like his mom! ha! Since mommy will be working tomorrow, daddy & Grandma Vauble will be taking him to his MRI.  They have to put a gas mask on him to put him under and the whole MRI will take an hour. 

Just thought I would give everyone a quick update with Brayden and what he will be going through this week.

Please keep him in your prayers