This Month

Wow. I am either really bad at blogging or really busy...maybe it's a combination.
June is incredibly busy for us. We headed to the beach at the end of May into June for James follow up appt.
Our Galveston mini beach trip was fun! WE started with a horrible case of misleading advertisement and subsequently dangerous and under construction condo followed by a safe but 1970 esque condo. WE sepnt most of the time at the beach and searching for sea creatures with the Broyles coustins(Madison, Austin, James and Gavin were so cute and had so much fun!). The water was amazingly clear and it was hot but very breazy~perfect weather.
We drove back to Houson on Monday for our appt w/ Dr. Edmonds. After the huge reaction James had to the procedure we wanted some good news and we got it. Dr. Edmonds felt that James was doing remarkably. The next procedure was scheduled for 6/23 at 7am. Nothing like Houston in the summer!
Gavin's birthday~my sweet little one~was 6/22. He is 4 now. Sweet Gavin. He was laying in bed with me on his birthday and he said: "I'm big now, I'm not a baby" No you probably aren't officially a baby, but you are my baby! His birthday party is Sunday 6/28. He was so tiny so little time ago!
We drove to Houston(again) at 3am on Tuesday mroning for our 7am visit to Texas Children's in Houston. There was just one tiny pocket left so rather than sedating James he had the option of having his neck numbed while the needle aspirated fluid from the pocket and then inject the OK-432. He was so sad that any needles were involved but chose to not have the IV. We couldn't be in the procedure room, but the nurse and child life specialist were very comforting and about 45 minutes later he was all done. He has had very minor swelling so far so we are hopeful that it was such a small pocket in the mass, that this will be an easier recovery. It was well over 100 on Tues in Hosuton so we decided not to try to do anything outside~James had hoped to go to the zoo.
Michael has a gig on 6/27. Funk Dirty is a band of really talented musicians. They play Jazz/ funk and Michael is the vocalist. Some of my family and my team from the store are coming to see him play. My Mom is coming up and will go with us to watch him as well. His birthday is 6/29...time just flies.
I'm so happy she is doing well enough to come "visit". She has chemo on Wed, but we'll have some time to do some fun things.

Headed to the Coast

James is doing really well. His mass is shrinking down every day. He is still pretty concerned and tells us to "look at how much smaller it is"every day:( But it is no longer causing pain and the fever is long gone.
We decided to make a long weekend of James follow up appt so we're on our way to the Beach...okay it's Galveston but the kids LOVED it when we went for the day before James' surgery.
Staying here:
http://www.galvestonescape.com/2994.html

We plan to have TONS of fun! My SIL and her kiddo's(my brother is deployed in Afghanistan right now) will join us on lovely Galveston Island.

Songs

James is in the laundry room singing:
"Heidi and Ginger are both my pets and Coco, too."
Repeat
Repeat
Repeat...

Not to be outdone, Gavin is now singing:
Ginger and Heidi I love you, love you, love you oo oo. Even Coco.
Repeat in different variations of above...

So sweet...

Differerences

James is old enough to understand that he looks different right now. Last night he was brushing his teeth and I noticed him looking at himself in the mirror. His right neck is very swollen and he looks very disfigured on that side. His sweet chiselled jaw line is no longer there.
Today we went to the grocery store and I must admit I was concerned that people would notice his differences. I am most concerned that he will notice someone noticing. Nothing like that happened, it was business as usual.
When we got home we were unloading groceries and I was making dinner.
James: "Mom why do I have to have this big place on my neck"
Me: " The medicine they put in to heal the pocket makes it swell. There is an infection so your body will heal it up"
James: "what's an infection"
Me: "it means you have an illness in your neck"
James: " I wish I didn't have to have a place"
Mommy" "It's because you are a very special boy. When you were born your neck was swollen and I knew you were special the minute I saw you. Then it went away and it will go away again"
James(starting to cry): "But my smile is different when I have this"
Me: "your smile is always the same to me, James"

I am crying now, but I did not as I said it. I hope his smile can be the same to him again very soon!

The Dr. said the swelling should start to go down after 10-14 days. The fever, swelling, and pain are WNL but still so unpleasant to see him go through. Jim and I are praying every minute that this was truly the best choice!

Sad:(

I am beyond exhausted. This week has been very tiring, but last night put me over the edge. I did not sleep for even 5 minutes.
James has been in some pain, but mostly if the spot ws touched. Yesterday his neck got really swollen and it was very painful. He couldn't even give hugs without crying and when Daddy tried to kiss his neck, he cried for 5 minutes. It is heartbreaking!
Last night his neck swelled up more and is about the size of a baseball. He cried all night long even on tylenol and then motrin. They are calling in Tylenol with codeine. He cannot get calm enough to fall asleep so I know it really hurts.
I feel so sad. He was perfectly healthy and his mass was hard to see for most people. I am questioning my decision to do this and also really reliving the emotions I had when he was so difigured as a baby.

Life as we know it

The surgery went great. Tiny little incisions so just the surgitape.
James did great but had a little scare in recovery while stil under. His airway was compromised and they had to prop rolled blankets under him to get his position right. After that he did really well. Swelling and tenderness as expected, but no fever yet. We were at Children's in Houston and they were fantastic! They kept us overnight for observation to make sure the swelling wasn't going to cause more breathing issues, but were able to get out Wednesday and just got back home Wed night. The Dr. said day 3 is usually the worst.We go back in 2 weeks for folllow up, blood work, and another EKG then 4 weeks later for the next procedure.
Things are pretty much back to normal, today(day 3). James has tenderness but can play and eat and sleep as usual. The hospital was great but still pretty scary for him. He was so sad that he could not go home and a little groggy from anesthesia so extra emotional. He just kept saying "I want to go back to the hotel" and tearing up.

Recent happenings

My Mom has been doing so much better after her septic infection and recent hospital stay. She had her surgery to reverse the iliostomy and is making a remarkable recovery. She only had to stay in the hospital 2 nights and is feeling great! This is wonderful news and remarkable considering all she has been through since Dec and almost losing her!

James procedure is scheduled for Tues at 7:30 am in Houston. We are going to leave early Monday and drive to Galveston for some fun and then head back to Houston to spend the night and be ready for our early morning arrival at Texas Children's. We will stay at least one night and if all is going as planned will drive back home on Wednesday.

I feel confident about our decision, but bad for James as he is really nervous. (and of course nervous about the what-ifs as every parent must feel before an anesthetized procedure). I am hoping that we are going to be one of the few who only have one procdure and then the mass shrinks away to undetectable size!

He is most worried about blood draws as his experience at the lab was horrible! I hope we can schedule future draws at Children's on our follow up visits as he was very traumatized by watching another child scream and then knowing the tech was coming for him and being forcibly held down while. Children's really does such a better job of diverting and quickly doing what is needed in as stressfree a manner as possible!