Thursday, May 31, 2012

Surgery Here We Come

Yesterday Carter went in to have another dilation procedure done. Unfortunately his airway had gone back to the starting point and we were not able to proceed with dilation. I went in prepared for this news. Trav on the other hand was more hopeful that there had been some progress. I knew that no progress meant surgery. I thought I was ready for that, but hearing it and the complexity of it made me nervous. 
In our opinion getting up at 4:00 am is way too early. I think Carter agreed. 

 Playing with Dad in the post op recovery room.
 It's not a good sign when you have been in the OR so many times that you have a favorite nurse. Miss Terrie has had us every time Carter has been in the OR. She is one amazing lady.
He didn't seem too bothered about the news.

Dr. Rohn went in and couldn't get his 4mm tube down Carter's airway meaning the opening was back to where we had started. There are two different types of surgeries to repair Carter's type of subglotic stenosis. As luck would have it Carter needs the more invasive of the two. This was the part that I was not ready to hear. They will go in vertically on his throat and cut his airway open. Then they will take cartilage from his voice box and/or rib to create a new canoe shaped airway. This surgery can be done in one or two stages. Stage one, where they would perform the surgery and remove the trach all at the same time. Stage two, where they would perform the surgery, he would recover then they would go back in and do more repair and remove the trach. We are praying that he is a stage one. Recovery will be pretty nasty. They will keep him completely paralyzed for a couple days to avoid movement so there isn't any bleeding in his brain. He will be in the pediatric ICU for an undetermined amount of time. Recovery is the part that I am most worried about.

Dr. Rohn is going to speak with the two surgeons here is Dallas (one being the guy from Cincinnati) hopefully this week to discuss Carter's case. He will talk with them to see if they feel comfortable operating on Carter. He told us it might be worth a trip out to Cincinnati to get a second opinion. We will of course meet with the doctors here and make it a matter of prayer on where we should get the surgery done. We know that the best place is in Cincinnati, after all that is where the inventor of the surgery works. We will keep our options open, but pray that we feel good about the docs here for so many reasons. 

I am so nervous about him going back in for a major surgery. I don't like the fact that the inventor of the surgery is still alive, because that just shows how new this surgery is. Don't get me wrong I am so grateful that something can be done, but the whole thing about "they were testing it on monkeys" only a short time ago doesn't provide much comfort.

I know that we will make it through this just like we have everything else, but knowing it's coming is really throwing me off. We hope to get it done as soon as possible meaning July/August. In the meantime we will keep at it and enjoy ourselves a little family vacation to SF and Seattle in a couple weeks. I was excited for a vacation before this, but am even more excited now.

In other news Carter will most likely be graduation from Occupational Therapy in the next week or two. He is a smarty pants that boy of ours. All fine motor skills caught up to were they should be. More evidence everything upstairs is working just as it should. Wahoo definitely reason to celebrate!

Tuesday, May 15, 2012

Too many toys

One of our favorite books at our house is Too Many Toys by David Shannon. We love pretty much every book by him actually. In the book there is a little boys named Spencer who has too many toys. His Mom gets fed up one day and makes Spencer go through all his toys with her to get rid of some. Every time I read this book I can't help, but think of Boston. You see he is a bit of a hoarder when it comes to his toys, artwork, rocks, stuffed animals, art supplies, and whatever else comes in his view. I am constantly going trough toys with him to weed some out. It is never an easy process and sounds something like this....

taken from the book Too Many Toys. A conversation between Spencer and his Mom about getting rid of some toys.

"All right," his mother said. "I'll help you." she picked up an Alien Space Ninja. "How about this one? You haven't played with this in years."
"But I was just about to!"
"Spencer," his mother said, "it doesn't have a head."
"I'm making him a new one!" Spencer replied.
"Fine," said Spencer's mother. "But this can definitely go." She put down the Alien and picked up a filthy one-eared bunny.
"Not Mr. Fluffers! Mom, how could you!"
"This one then," she said.
"That's Mr. Fluffers' best friend!"
"This one?"
"Mother, have you forgotten? Grandma Bobo gave me that on my fourth birthday. And I'll never be four again - EVER!"

I kid you not this is Boston to a T. He remembers every little thing he has and usually where he got it from. It seems there is some sort of sentiment tied to every little thing he owns.
I usually always make him do the weeding with me, because if not he will notice where they have gone and doesn't take well to my response of "I threw them away" He gets very sad when he sees a piece of his preschool work in the trash and usually says something to the sort of "Did you not like my picture? Did it not make you happy? or "I worked so hard on that and it breaks my heart its in the trash" No joke folks he knows how to pull the heart strings that's for sure.
Yesterdays clean up was no different than the usual other than he seemed to have a soft spot for his papers full of scribbles. When I would throw it away he would remind me that there was still room to color on the paper in the corner. 

Hoarder and all I LOVE this boy! He can make something like organizing toys fun and very entertaining and sometimes downright frustrating. So even though I think we have Too Many Toys and the thought of the boys ever getting more makes me cringe I am so glad they make him so happy and that he really does love the things he is given.

I should mention that at the end of the book Spencer turns the box of old toys into a space ship and tell his Mom they can't give away the box Claiming it to be the "Best toy EVER!" Yep that is Boston too.

Mothers Day

I had such a great Mother Day this year. There is nothing I love more than being a Mother. There is so much that goes into it and so much that comes from it. 
 On Thursday I got to go to school with Boston for "muffins with Mom". It is always so fun to see him at school with his friends. He absolutely LOVES school! We had breakfast together and then the kids put on a little program for us. He was so excited to give me his present. I loved it and am totally the proud mom that displays my kids little treasures now. At the end we watched a slide show of the entire year at school. It was so sad to see how much he has grown up in the past year. I sure do love my little guy. I should note that it was Carter's first time to Boston's school where he got to interact with the kids and Boston was so proud to show him off. 
 For mothers day I got tickets to the Texas Rangers game with my boys. I could live at the ball park. Thankfully I think I will get my fair share with the boys. 
 So grateful for these boys that made me a Mother. (please take a look at Carter's cheeks. full on steroid cheeks going on ha)
 After a yummy breakfast from the two biggest boys we headed out on our Sunday family walk. In this picture Boston was making a wish that daddy could have a pair of TOMS. he feels bad that daddy is the only one without them. 
 Just one of the creative gifts from Boston. Rollie Pollies are a hot topic around our house.
 I love this man. He is absolutely incredible and so perfect for me. His culinary skills still put mine to shame, but I don't mind especially when he whips out shrimp scampi and steak for dinner. Yum!
 I love these boys so much. They mean the world to me and I am so blessed to have them call me Mom.
We had my and Brother over for dinner. I have to laugh at these pictures they totally show the relationship my Mom has with the boys. If you can't tell Boston thinks she is good for a tackle at any given moment.

I have been blessed with incredible Mothers. My Mom is such an amazing women. She has been such a huge help to us in so many ways. Our boys are crazy about her and she loves them and will do anything to spend time with them. My Mother in-law is incredible. I am so lucky to have such a great relationship with her. She is so selfless and loves her kids so much! The boys feel like gold when she is around. She raised one stellar boy and I am so grateful for that and I benefit so much from it. Trav and my Mom have a great relationship. They are so sarcastic and can go back and forth joking with each other all day. He is always so nice to remind my mom that she is the best mother in-law he has ever had. There is no doubt that Trav is a Momma's boy. I knew it within weeks of dating him. He loves her more than she will ever know.

Monday, May 7, 2012

Dilation take 2

Last week we had Carter's second dilation attempt. We went in thinking that it was totally working due to the fact that his eating improved literally overnight, he no  longer needed oxygen, and he sounded better on his speaking valve. I had some doubt, but will talk about that later. Boy were we let down when the doc told us that it wasn't working as well as he had hoped it would. His airway was about half way open, which seems like a big improvement, but given all his other stuff it isn't enough. He went ahead and dilated it again and said that we will go back down in a month and check the progress. He thinks that we will most likely need to go the surgery route. With Carter's lungs, paralyzed vocal chord, and narrow airway also known as the trifecta around here he needs a nearly perfect airway to breath successfully without the trach. He would have no problem breathing normal with with one or maybe two of the problems, but three definitely cancels it out. We forget sometimes the condition of his lungs, because even though they don't cause us alot of grief we need to remember that they were four months under developed and we do 6-8 breathing treatments a day to stay up on them. 

The Sunday before we went in for the procedure we went to the NICU reunion. It was so good to see past nurses, doctors, and babies all in much better conditions. Below is a pic with Carter and Dr. Perez and Dr. Weisoly, With Nurse Cathy (she only loves him a little bit...ok A LOT!!!), and with miss Ashley and his buddies Ella, and Harrison.
At the reunion I was talking to Dr. Perez and Dr. Weisoly about his airway. They all have seen his case and know the condition of his airway. They kept talking about WHEN we get the surgery, not IF we get the surgery. It was really bothering me, but I trust these guys A LOT so I listened. Then Dr. Weisoly planted a BIG surprise on me. He told me that the Dr. in Cincinnati had been training a doctor over there for about 10 years and he just moved to the Dallas Children's hospital!!!!!! Talk about a miracle! He said that if Carter's surgery was "normal" he would absolutely have this guy do it and not worry about heading out to Cincinnati. After hearing that I knew or at least was more prepared to get the news about possible surgery.

 I took this pic in the OR waiting room. He definitely has some good skin!
 He did so much better coming out of sedation this time.
He sure was a tired boy and was pretty much only happy in Mommy's arm, which I was more than ok with. Other than needing oxygen for a couple hours after the procedure he did great. Dr. Rohn was so great to let us go home instead of staying the night which was awesome.

Trav and I had a hard couple of hours dealing with the reality of his possibly having to get a pretty intense surgery. It didn't last long though thankfully. That night while saying my prayers I broke down and was overcome with an incredible sense of peace and understanding. Heavenly Father has blessed us with miracle on top of miracle time after time and one being the location of a new Doctor. Of course we are still praying that he doesn't have to have the surgery, but we know without a doubt that if he does everything will be just fine. Carter is a fighter and has an incredible spirit, one that we feel beyond blessed to have in our family.

Grandma D turns 50!

 On May 1st we celebrated my Mom's 50th birthday! Boston and I had fun making decorations together. She sure is one incredible Women and I can't even begin to think where my family would be without her. Boston put together his own little gift for her that had quite the little collection of things and gave us all a good laugh. For her birthday dessert I made a fruit pizza and we both really enjoyed it especially since it is the closest we have come to sweats in two months! Happy Birthday Mom I hope you know how much I love you....if you don't I will prove it when I kill myself running 13.1 miles for you. If that isn't what you call love I don't know what is ;) Boston was lucky to have the celebration continue overnight with a sleep over. He had so much fun watching Beetohven in their fort and Grandma D was great to make him feel so special on her day.

Kelly & Cason

My good friend Kelly and her darling little boy came down to visit us over the weekend from OKC while her husband was away for work. It was so good to have them here and a much needed change of pace. Boston and Case were good little playmates mostly because Cason said yes to everything Boston asked him to do. ;)
 We met up at the sand park with Ryan, Jamie, and the boys.

 Watching some tunes while Mom's got ready.
 Is this not the cutest picture ever!
 The Travis and Kelly family. Ha ha. They were so good to let us drag them to all Boston's practices and games which he happened to have something everyday they were here.

 Yep he is that cute and had THE cutest little voice ever!
 He loves to eat wood chips and I let him. I figure its good practice for textured food. ;)
 Typical Boston picture.

 Having a blast at the spray park. Cason is for sure a water boy!

 Case could be a little shy, but I learned quickly that all you had to do was a little trick and you would soon be his best friend. He even let you do it again, and again, and again!
 They became buddies pretty quick.
 Cute boys at tubby time!
 So weird that they are only 5 months apart!
Trav told us he would watch the boys so we could get out. We were so tired that our night out ended up being grabbing Chitos (the best Mexican food around) and bringing it home. We are pretty crazy I tell ya!

Thanks for coming guys it was so fun to have you here!

Preschool Play

Two weeks ago Boston had his Preschool play. He was SO excited that he got to play the big bad wolf! He did such a good job! I definitely had a proud mommy moment when he was up there. He didn't get any help with his lines and spoke loud enough that everyone could hear him. 
 You pretty much have to pull his hair to get him to tell you about school so I really had no idea how it would go. It was so cute and he sure was excited to have me there.