Cleaning House

Time to clean up things a bit. 

If you stil read this blog please leave your e-mail in the comments.

As I looked over the list I realized I don't know who so

many people are on my list and wonder if they even read.

No need to waste the space. ;)

Thanks for keepin' up with us

Summer

Since it's so blasted hot and humid you will find us at one of two places. In our house or in the water. 

 Playing in the back yard and giving himself a cast on his "hurt" foot. He made it out of a paper towel and scotch tape. 

 Playing with the Hunters at the "beach".

 Such nasty water and he was loving it!

4th of July

We had a great VERY hot 4th of July! We started the day at the McKinney parade with my Mom, Kyle, and the Komenda's and the Hunter's. I don't know what it is, but I have to go to a parade on the 4th. 

Cute daddy and Carter

Waiting for them to throw candy. They never did.

 We are one hot frizzy haired family.

 Bobo and his "girls" as he calls them.

 Snow Cone after the parade tradition. 

 Grandma D. and here chunk

 After the parade we came home went swimming. The boys are crazy about the pool! Poor Carter wants so bad to put his face in the water and swim like Boston. It's a good thing he can handle his trach being submerged in the water, because no matter how hard we try to keep it out he finds a way. 

 After a yummy BBQ we went over the watch the fireworks. The sprinklers came on and left us and the rest of the hundreds of people there for that matter soaked. We weren't going to let that get us down, but changing the location of the fireworks sure did. We had a less than stellar view through a couple of huge trees. Definitely not worth keeping the boys up so late. O well Boston enjoyed a plethora of glow stick. Carter, well he didn't really enjoy any of it. 

Airway Reconstruction Surgery

On July 3rd with met with Dr. McClay here at the Dallas Childrens Hospital. He was referred to us by multiple doctors to check to see if he would take Carter case and do the surgery locally. We prayed very hard that we would be able to do it here instead of Cincinnati for obvious reasons. Dr. McClay felt very comfortable taking on Carter and has done a lot of surgeries just like his.  Wahoo!!! 

We were so excited, but then he put and IF into the picture. Turns out that Carter's reflux is way worse than we thought. Due the surgery he had back in the NICU that prevents him from throwing up we weren't able to see some of the more visible signs of it. Leaving his airway red and swollen and if not taken care of could undo the surgery. So if Carter's reflux doesn't get under control he will not perform the surgery until next year. The first available date he had open to do the surgery is September 17th. Seems far away, but we need the time to fix the reflux. The Reconstruction is a four part process spanning out over 2.5 months. The would put us at the end of November when the final one would be complete which is well into RSV season. The four surgeries have be done in the exact time table to be successful and he won't perform it any later because of RSV season which would be why we would have to wait until next year spring time. 

Right now we have doubled up his prevacid and started him on a new formula if you can even call it that. On the front it say medical food. It looks like that with a lot of vanilla added for flavor I guess. Carter is not a fan of the taste at all. I don't blame him. Say a prayer this works. Will ya please.

I try not to think too much about the IF, but if I am being honest every time he coughs or shows any signs of reflux I think about it which is quite a bit. Also we seem to keep falling into the IF category and I can't help, but think we might again. This surgery is SO important for Carter's developmental progress. having the narrow airway is holding him back in so many ways mainly feeding and speech. The older he gets the more imperative it is that we get these two things at least moving in the right direction and without the surgery we are stuck!

If you have talked to me I most likely haven't mentioned the IF to you because really I don't even want to think about it not happening. I am SO ready to be done with the trach.

With that being said here is our Surgery schedule for Sep-Nov (mostly for record keeping because I am sure none of you care that much about specific dates)

Sep 10th- Surgery pre-op 

Sep 17th- Surgery #1 Laryngotracheal Reconstruction

Oct 8th- Post op

Oct 15- Surgery #2 Dilation with stint and scar tissue removal

Oct 29th- Surgery #3- Dilation, Tonsil and Adenoids removed

Nov 12th- Post op

Nov 19th- Dilation, scar tissue removal, and TRACH REMOVAL!!!!!!

So for the surgery they will go in and take cartilage from his right rib. He will take the cartilage and graft it to the shape and size he needs it to be. After that he will make a smiley face incision in is neck and split his current airway open adding the new rib cartilage to then create the new airway. After he will have 2-4 incisions in his neck and chest for drainage tubes to be placed. Crazy right?!?! The doctor hopes that his hospital stay will only be 7-14 days at the most.  Surgeries #2 and #4 should be fairly simple and in and out of the hospital. He mentioned that his tonsils and Adenoids were enlarged so "we might as well take those out too" Hopefully that will be no more than a 4 day stay. Between surgery 3 and 4 they will cap him off meaning close of his trach and do a sleep study to see how he breathes IN and OUT his mouth for the first time in his life! SO exciting!!! So pretty much we will live at Dallas Children's from Sept - Nov and well to be honest we would be very happy to. 

eighteen months

Carter Boy-

I cant believe you are eighteen months! Even though some days feel forever long I really can't believe you have been with us that long. I think some days I can't believe it, because I still feel so blessed that Heavenly Father let us keep you when odds were against us. I hope you know what a blessing you are and always will be to our family. You have turned a new leaf developmentally that last month or so. We have had so much fun watching you learn new things. Since moving is so much harder for you every little thing you do gets celebrated like a babies first steps. I can't even imagine what kind of celebration you will get when that happens. I think your Brother is probably your best cheerleader. He will come to me with the biggest smile on his face and say "Mom Carter just reached for a toy!" like it is the greatest thing you have ever done. You love the attention and clap for yourself every time you finish a new "trick". You have started to move a little. It is in a very non-traditional way, but somehow you make your way across the room. You do this little 360 circle scoot on your bum and ta-da you are in a new spot. Pretty much all movement you do it backwards...army crawling, bum scooting, riding your car, and even a little hands and knees crawling. Therefore you usually end up stuck!

You have gotten to the point that you get very frustrated that you are moving the wrong way and further away from the toy you are trying to get. It makes me sad for you, but don't worry buddy you will get there and Mommy, Daddy, and even Boston help you do your therapy exercises daily to try and make it sooner. 

You still don't eat much of anything by mouth. I would say 95% of your nutrition is through your feeding tube. I try to be very patient with this knowing that a big part of the problem is because of your narrow airway. There is one thing that you love and that is water! You pretty much never turn that down. Now if only I knew of a way to add some major calories to it without changing the taste or texture we would be in business. You are very good at feeding yourself, but are also VERY good at spitting it back out. We should make a deal that after surgery when you have a nice healthy airway you should go to town on food. Deal.

Speaking of surgery I am so sad that you will have to go back under. I pray daily that your body will be strong and ready and that you will recover as quick as you usually do. I try not to think about the new 4-6 scars that you will get. It makes me sad to see them all over you mostly because I worry that someday they might bother you. I read in a book about a lady who was burned and scarred all over her body. As you can imagine she had a hard time with the scars. She was told by one of our churches that her scars should remind her of what a miracle she is. He compared each of her scars to the Saviors from the cross. He told her that just as the scars on his hands and wrist were proof of his miracle her were proof of hers. I hope someday you know what a miracle every little scar you have on your body is and that your Mom and Dad are in fact very grateful for each and every one of them.

One major thing that happened at 18 months is that Mom and Dad finally kicked you out of our room! More like you begged to not sleep in there anymore! You started waking up lots and getting really annoyed when Daddy would wake up early for work so we sent you in your room. I think it was a good move for all of us. We don't have to suction you ALL night and you sleep like a champ. I should mention that you HAVE to have your snuggly, your binki, your silky blanket, and a nice dark room does you very well!

You are the happiest little guy there is! Seriously I don't know how we got so lucky, but boy did we. You love to flirt with people. Because of your trach you aren't able to talk, but were you lack in words your eyes definitely make up for it! They are SO expressive and so big and blue with long lashes! You love to wave, clap, fold your arms, point, blow kisses, and give Mom loves. I am not even sad that I am the only one you really give them too. I actually LOVE it! Your feeding tube has definitely done a good job of beefin' you up. At your well check up you Weighed 27 punds 12 ounces and were 33.5 inches tall and your head was 20.5 inches. We sure know how to make cute babies with big noggins in our family. We sure love you Carter Boy and I hope you know how much I love being your Mom. 

Seattle - Mariners Game

The day we got back from the ranch we headed over to a Seattle Mariners game. I've said it before, but I could live at the ball park. Watching the Rangers with the Mariners climate/tempature would definitely be ideal. The kids were a little restless and bounced back and forth. Thankfully we had a 12 adults to 3 kids ratio. Such a fun night together as a family.

The next morning we left for home. :-( Seattle was SO much fun. My Grandma had meals, sleeping arrangements, cars, directions, and everything we needed worked out like a well oiled machine which made things so easy! I loved being back in her home. Everything from the smell to the wallpaper was so comforting and brought back so many memories!

It feels good to be back in the family vacation mode after an almost two year hiatus. I think it is so important to build lasting memories with family and I am so glad we had two weeks to do it! 

Cute story to remember:

I mentioned that Boston was obsessed with my cousins Chandler and Grant. When he knew that the vacation was coming to an end he started praying that Chandler and Grant could move to Texas.  I should mention that I listen to sports radio in the car. So one day I was listening to Ben and Skin (my fav!) and they were talking about how the Dallas Mavericks should have brought Tyson Chandler back to Dallas after winning the championship. Of course all Boston heard was Chandler coming to Dallas. He got SO excited and started saying "I told you Mom Chandler is coming to Dallas! They just said it on the radio. I knew he would!" He's still waiting for him to get here. ;-)

Seattle - The Ranch

Right after the race we went back to my Grandma's to shower and head up to the ranch for a family reunion. When my Mom was growing up every summer her and all her cousins would got to Star Valley Wyoming to work on the family ranch. This family reunion was with the Ross and Irene Woodward family at the Ensign Ranch just outside of Seattle with all the cousins my Mom grew up with working at the ranch. It was SO much fun. I love getting together with all my family and it had been a while since we had done a reunion and the ranch did not disappoint. 

 Cousin time! We spent a lot of time outside doing different things from feeding the horses, playing basket ball, rock climbing, playing horseshoe, and the favorite of late night steal the flag. I had so much fun playing steal the flag with my cousins and second cousins and we all took it very serious which made it all the more fun! I come from a wee bit competitive family. 

 There were activities planned throughout the days and one of the funniest ones was minute to win it. One night we had a big family home evening where everyone had to do a skit. I wish I had pictures they were pretty funny. We also watched a movie about my Great Grandma and Grandpa it was so fun to see tidbits of their life. It was such a great night and the spirit was so strong. 

 Austyn, Linzi, Chandler, and Grant are some of my youngest cousins and it was the first reunion we have had that age difference didn't make a difference. Boston was in love with all of them! At our last big family reunion in Minnesota I was 17 and my cousin Chandler was 4 and he was a big fan of me. Every picture taken then he was glued to my side. Everyone always gives him a hard time about it so we had to get a kissing cousin picture. It was fun this time around he being 17 and Boston 4 to see the roles switched. Boston was obsessed with him it was so cute and Chandler was great to let him tag along everywhere he went. 

I LOVE these pics of Boston rock climbing with my cousin Austyn helping him. He never did make it higher than her shoulder, but he LOVED it!

 One of the game nights we played Limbo it was SO funny. I don't come from a very flexible family which made it even more hilarious. I was the adult winner which wasn't saying much. They also had tables set up to do little crafts which was fun. One of them had all different kinds of duct tape and to say Boston was a fan was an understatement. He made visors, swords, shoes, and a wallet out of duct tape. Magically he came home with a wallet full of money. It didn't take him long to figure out that if he showed it to the adults they would put a dollar in it. Smart boy!

Trav had to go back to work so he wasn't able to come up to the ranch. I made sure to keep him up to date with pics of the boys. Boston loved the sleeping arrangements because he got a bunk bed! He asks for a bunk bed all the time and can't wait for Carter to be big enough to share one with him. Speaking of Carter he loved it up there too. He loved scooting around the gym floor and was happy to be passed around to all the family members that just so happen to be BIG fans of his. He had lots of "Carter I have been SO excited to finally meet you" moments. We have an incredible family that has been praying for little man and our family and it was so fun for them to meet him.  I feel like I didn't see the boys all weekend. Carter was being passed around and Boston was loving all the teenagers giving him more attention than he ever needs. It was SO much fun I can't wait to do it again next time with Trav there. 

My immediate family

Top Row: Unlce David, Brother Kelsey, Unlce Mike, Cousin Austyn, Aunt Jeane, Grandma Haymond, Cousin Grant, Uncle Dave, Neice Sloan, Brother Kyle

Bottom Row: Mom Diane, Sister In-law Brienne, Aunt Tracy, Boston, Cousin Linzi, Me , Carter, Cousin Chandler, Aunt MaryAnn.

We had quite a few of my cousins that couldn't make it so the only way to fix that problem is to do it again! I really wasn't expecting the ranch to be that great, but it was awesome. I didn't want the weekend to end. I LOVE being with family more than anything!