Wednesday, April 25, 2012

Ok Ok I get it

I have been in a funk lately. Not sure what really triggered it, but I was having a hard time bringing myself out of it. I was having a hard time with the fact the since Carter has been home we really haven't made much improvement on his feeding and it is SO tiring and VERY frustrating trying multiple times a day to feed him and sometimes only getting a couple drops in his mouth. We would have random feedings where he would do so great and I would feel like we were making headway only for it to be smashed the next day. We have bought every bottle and sippy cup under the sun and nothing seemed to make a difference really. The daily trips to therapy were starting to get to me. I was putting so much pressure on myself for all his developmental progress or what it thought was the lack thereof. I felt like I couldn't keep up on my house. I am antsy about this whole dilation process and if it will be successful. Overall I was just in a major funk. I pray for improvements in the areas multiple times a day and felt like nothing was getting better. 

Well over the past week I was reminded over and over again that my prayers are being heard and answered. Let me share the ways.

One day we were at the sand park and a total stranger came up to me and said it was so good to see a trach baby out and about. She said that parents of trach babies really never take them out and it ends up hurting them in the long run. She said she was proud of us for trying to make things "normal" in something that is totally not normal at all. Come to find out she worked for Children's hospital and yep she made me cry. (note to self always always compliment parents who are living outside the "norm")

At physical therapy it was time to set his new 6 month goals. When she mentioned things like crawling, cruising furniture, bringing himself up to sitting from laying I got a little overwhelmed those all seem so far out there. Miss Lindsay reminded me where we were six months ago and how I thought things like sitting, reaching above his head, lifting his head to a 90 degree angle, bearing weight on his legs, all seemed unreachable. I get so caught up sometimes in the whole "my baby is 16 months old and barely moves" thing that I forget how MUCH progress he has made. I sure can't wait for him to get moving. He is ready and wants it and 16 months is a LONG time to wait for it.

Ever since Carter's dilation he has been eating like a champ! A major milestone was completing an entire jar of baby food. It took him a whole to do it, but we sure were proud. Before we would maybe get a couple bites in a day and would always have to throw away the food before it would go bad. He is still very aversive to food and puts up a fight, but holy smokes MAJOR progress. 

Random shoe sales person at Nordstrom was asking about his trach (love it when people ask, bugs when they just stare and stare) and I gave him a very brief description of his life. He reminded me that "nothing else matters he is here". I know this, but for some reason it made perfect sense coming from a stranger.

Carter is a moving boy. He is not on the move, but just over all he is just moving more. He finally decided that rolling from back to stomach was not the worst thing ever and is enjoying the freedom it brings him. We are loving looking over to find him in a new place in the family room.

He has been off oxygen for 4 days AND nights in a row. Something he has never done or even been close to doing. 

Not to mention the constant love and support and encouragement we feel from family. 

I felt like telling Heavenly Father ok ok I get it we are beyond blessed and I see it now. I am so glad that my eyes have been opened and I am back in to the mode of realizing the MANY miracles that we are blessed with daily. I love my family more than anything! My boys, all three of them are such a source of strength to me. Especially Travis, I tell you what that man is incredible! I don't know how he does all he does and so well. I definitely came out on top with him by side and know how blessed I am to have him.

*Sometimes when Boston is crying for no apparent reason we ask him if he just needed to get a good cry out. Apparently I just needed to get a good blog out. Sheesh

Major Instagram Dump

I love Instagram and need to give it credit for capturing a huge majority of the pics I take these days!
 Spending the afternoon at the sand/spray park almost daily.
 My dad got the boys this trampoline. Boston loves it and it's perfect for our tiny back yard. Carter much prefers to be on the outside.
 Rangers game with my brother and boys.
 I am pretty sure I could live at the Rangers ballpark. We went to the perfect day game. Sad Trav had to work, but amazing that Carter took and hour nap in my arms!

 Carter getting cozy during family movie night.
 Eating an orange marker. Both he and Boston thought it was the greatest thing ever!
 When Boston got word our swimming pool was open there was no stopping him from getting in. It was freezing cold and he hasn't asked to go back so I think he will listen now when I tell him it's not ready.
 Cheezer before school with different flops on. This was the first time in two weeks he hadn't worn his shirt backwards. I think we are back to normal with forward facing clothes and the same shoes. 
 Carter's way of letting us know he was done with his IV. There was blood everywhere. Of course he waited until night when everyone was asleep. He sure was proud of himself though.
 Time out. He really is such a good good boy most of the time. This particular day I would have have given him to almost anyone that would have taken him.
 Cute cheeks or big head, tiny bum.
 Carter was bugging Boston and it made me so happy to see him do something so normal. Boston was totally fine with it until he started pulling his hair and ears. 
 Dinner and spray park with the Hunters.
Rocking the new shades that HAD to be red.

Wednesday, April 18, 2012

Airway Dilation

We had to be at the hospital this morning at 6:30 am and he didn't get taken back until 8:30 go figure. He was pretty darn happy for us waking him up so early.

He had a serious conversation with daddy before and was making THE cutest faces.

He gave mom some great snuggles and caught some zzzzz before the docs came in.

When you become good friends with the anesthesiologist they sneak you back to the OR so you can hold your baby until he is out. Carter definitely comes with a lot of perks. The nurse told us the procedure would take an hour and a half. So when the coordinator came out twenty minutes later stating surgery was over our hearts sank. We immediately thought that something went wrong and they weren't able to do it. Scared the day lights out of us. We went in the consult room to wait for Doctor Rohn and when he walked in with a smile and said things went great we were a little confused. So to say we were relieved was an understatement. He cauterized a little piece of tissue off and noticed that there was more swelling in his airway than there was when he went down last month. We had taken carter off Prevacid a month ago and Trav and I were noticing that he definitely needed to go back on it so we literally put him back on it last night. Dr Rohn said the swelling was due to his retching so we definitely needed to stay on Prevacid. Hopefully the swelling will go down with less retching.

He had a very hard time coming out of anesthesia this time which was new for him. He was very agitated and was throwing himself around for a couple hours. It was so sad. Then all the sudden he kicked his leg up and was fine.

His tummy was bugging him, but after a huge blowout he was much happier. He has been very restless all day and we are all very excited to go home tomorrow. Besides bloody secretions in his trach he is back to normal as far as his saturation levels and we are pretty happy about that. Boston and Grandma D (who he referred to as his "sweet Jo Jo" all day) had a fun day together at the sand park and came to meet us for dinner.

Today is our one year anniversary of the day Carter came home from the hospital and I can't do a post without mentioning how blessed we are. It has been an incredible year with so many ups and downs. I love being a mother more than anything. I feel this year has really stretched me as a person. I have learned how to rely on my Heavenly Father in a way that I have never done before. I am still learning how to trust his timing better, but with that being said there has never been a time when looking back that his timing was a huge blessing in so many ways. I am continually amazed at all that Carter has overcame and sometimes can't even fathom that we were once told he had a 10% chance survival rate and I have this amazing thriving beautiful boy. He is no doubt a miracle and I am beyond blessed to be his mother.

PS. I still get so excited when I hear someone tell me that his lungs sound like those of a champ. After hearing that he sounds like a dishwasher for so long it's music to my ears.
- Posted using BlogPress from my iPad

Monday, April 9, 2012

Texas Blue Bonnets

It's a must to take pics of your kids every spring in the blue bonnets. I have missed it the past couple years. I wasn't going to this year so I got the boys ready today and we were able to get some really cute ones in about 15 minutes. It's a good thing we went because they are already getting smashed down from everyone taking their pics.
This kid and pictures don't really mix these days. He is always pulling some face. I love it thought they are so him.
Carter Loves the grass and Boston Loves collecting things in jars so they both had a good time.
Uncle Kyle helped me get some good smiles out of this boy.
Getting a good pic of these two isn't easy these days.
So this is the best we got and I love it!
This is my favorite of Boston. Such a ham.
Clapping and smiles. Ahhh I love it!

Easter Weekend

We had such a great Easter Weekend!
Friday morning we started off with our daily bike ride and stick racing with friends.
Friday night we hit up our favorite place to play.
We LOVE the sand park

This boy LOVES the sand.
After the park Trav went to pick up his brother from the airport and the rest of us hit up Chitos then went home to watch Rangers opening day game.
Saturday morning we dyed eggs koolaid style. I'm a believer worked way better than the box stuff and much cheaper too. Later in the day we played with family and Trav, his brothers, and my brother went to the batting cages. They all payed for it and were so sore. I think they are getting old. Ha. That night Trav and his brothers headed to the game and we watched at home.
Sunday morning the Easter bunny stopped by and left a pretty good pile of dollar store toys for us to hit the pool and sand park with. Boston is a champ at the egg hunt and will probably not like it when he has some competition next year from little brother.
Seriously it doesn't get cuter than this. I wasn't sure if a tie would work with his trach. Boy am I glad I got him one he looked so cute!
Wilson party of 4 before church. Church was great! Our choir sang one of my favorite songs and did it beautifully. I survived my RS lesson. Funny story.... Trav had to take his brother back to the airport so Carter was with me while I taught. My two friends watched him and in the middle of the lesson he sneezed and popped off the speaking valve on his trach. It went flying across the room. Thankfully everyone just laughed as I took a little break to find it and put it back on. The joys of having a trach baby. I must add that he was so good while I taught. :)
The cutest boys ever!

I love Easter. It brings so much excitement with kids. I love it even more because it is a time to reflect back on the life of our Savior. I know that he died for me and I know that he lives. I feel so blessed to know what I do and am so grateful for all that I have been given.

So Close

He is pretty proud of himself too!

Little Man is so close to crawling! A bunch of Carter's reflexes never developed and because of that he has been on the slow track as far as developmentally. The only way for his reflexes to develop is by muscle memory. We literally have had to teach him how to move. Over and over again we help him get up onto all fours and he is so close to getting there himself. We are beyond proud of him and pretty much think everything he does is icing on the cake. Once we get him up on all fours we then have to work the actual crawling part, but I think that will come quicker that this has. Way to go Carter Boy!

Boys Night

There is nothing Boston loves more than "Boy's Night". Last week he and Uncle Kyle got to ride the DART downtown to meet Trav for a Mavs game. He was beyond excited! He asked a million and one questions on our way to the DART station I can only imagine how many he asked Kyle on the way there. Trav was just as excited as Boston was. He has waited forever to be able to do things like this where Boston was at an age the he appreciates them more. They had such a good time and if it were up to Boston they would have bought out the entire pro shop.

Trav was a lucky man last week with two guys nights. I am such a good wife, but he deserves it because he is an even better husband. My sister in law sent B down for his birthday to go to a Rangers game with his brothers. They had such a good time and really enjoyed being together.

Easter Party

Last week we were invited to a kids Easter Party and Boston was beyond excited! He woke up extra early to remind me that today was the day of his party. He had so much fun playing with his buddies and I don't think he minded the candy either.

The Potato's are coming

"Closet Party"

Last week all over the news we kept hearing about bad storms coming, possibly tornadoes. There really isn't anything I dislike about Texas besides tornado season, and june bugs, and fire ants, and August. I picked Boston up from school on Tuesday and he said that "we need to hurry home my teacher told me the potatos are coming". Poor little guy totally though a storm of potatos were coming. When we got home we put Carter down for a nap and curled up on the couch to watch the news. Boston was very into everything that was going on and was pretty nervous. Anytime they would tell a different county to take cover he would ask if it was us. When it came time for us to take cover I told him to grab some things that were important to him and meet in Mommy's closet while I got Carter. He came with Cheez its, capri suns, and a couple books. Hmmm at least he would have a full tummy and be entertained. I grabbed Carter and his crib matress and we camped out in the closet for a while. I turned on a movie on the ipad for the boys and they imediately thought the "closet party" was the best idea ever! I watched the storms on my phone and kept up to date on facebook to see when we were clear. We are so blessed that we were safe, because there were so many around us that weren't. I think there was a total of 12 tornados that touched down and did some pretty good damage.

Thursday, April 5, 2012

All Smiles

Yesterday that is what Trav and I were. Things have been going so great with Carter lately. He is developing at such a quick (quick for Carter) rate. His therapist have been so happy with his progress, one even cried she was so happy. He finally had an AWESOME blood gas. I got the doctor to back off a while ago telling him that Carter needed time to recover so he didn't do any blood work for tow months. Friday we finally got some done and his co2 was 39!!! I know that doesn't mean much to most of you, but it used to be around 57 and that is when they were talking about putting him back on the vent. His co2 has never been that good.

Although we were very happy about that it wasn't what had us smiling ear to ear. I got a phone call from Dr. Rohn his ENT and he was calling to schedule Carter's first airway dilation! HE kinda lost me after he started talking about taking OUT Carter TRACH!!!!! We still have a ways to go , but the fact that we are actually doing the LAST thing that needs to be done to get it out is beyond exciting for us! He said that he got several opinions and according to what they had to say and literature he was very confidant that this would work. I don't think I could ever express how badly we want this to work.

We still have some docs that are skeptic and think that surgery is the only option. Thankfully they don't have the say. I wanted to kick one of our docs in the face (harsh but true) last week. He is our lung doctor and and in his visit he had more to say about Carters feeding, development, shoes, and especially this than he did about his lungs. His words were exactly this "I don't know why you are going to even try dilation. It isn't going to work and you will wish you had just gone straight to surgery" How's that for a positive doc. Little does he know that if this doesn't work I will never regret trying this first. There is absolutely no harm in this and I would hate to do such an invasive surgery without exhausting all possibilities.

So with all that being said exactly one year from the day we left the NICU we will be going in to Children's Hospital for an overnight stay to dilate Carters airway. Dr. Rohn will go in and do a balloon dilation to expand his airway. They will keep him overnight just for observation. Somewhere 6-10 weeks down the road he will go back in and check out his airway to see if he needs to do it again or "I will walk out and hand deliver you the cutest little guy without a trach". Dr. Rohns words not mine. Can you see why he is our FAVORITE doctor. Seriously I think about the hundreds of patients he has and he takes the time to call us and have conversations like this with us. So mark the Calendar for April 18th as the day we start the last leg of our trach journey.

We are so blessed and can't even begin to fathom life without a trach and the dang suction bag. ;) Being able to hear his voice all day, knowing he is awake because he is crying or talking, being able to see his neck, not having to do trah care every day, the hopes of feeding improvement, and mostly one less foriegn object on my baby are a couple of the resons this leaves me giddy. I hope it works and have faith it will.

Monday, April 2, 2012

G&G Erickson

It's a good thing my step sister moved to Texas a little over a year ago, because I think it finally got my dad and step mom to come out for a visit. Boston always loves having visitors especially people who give him lots of attention and they did not disappoint.
They went on the merry go round I think four times. Boston loved it and Carter just went for the ride. One thing was for sure Carter did not like my dads facial hair.
The gang at one of Boston's games. He loved have them there and made sure to give them lots a waves during the game.
The boys. I wonder who Kyle looks like?

First T-ball Game

On Friday night Boston had his first T-ball game and I must say it was the cutest/funniest thing I have ever seen. He loves that his team is from where G&G Wilson live, but still reminds us that the Rangers are his favorite.
Boston played great! He hit the ball really good, was the cutest catcher I have ever seen, and only got distracted by the dirt for about 50% of the game. ;) The cutest thing was watching them all slide into the bases. They would all run to the ball after it was hit no matter where they were on the field. It was hilarious. At one point the other team had to have a time out on the pitching mound because they would dog pile each other every time someone caught the ball. They didn't keep score during the game and I am pretty sure there were no outs. He is really enjoying T-ball and asks everyday if he has practice or a game. He was so excited that he was in charge of bringing the treats to his first game. He chose red Gatorade and rainbow gold fish and was so excited to hand them out to everyone on his team. He was a little let down at Saturdays game when no one brought treats. Carter loves being outside at the games, but prefers to be standing by himself holding onto the fence. Cute boy.

This Boy

What can I say other than I am pretty crazy about him. This picture describes him perfectly right now. Crazy face, one boot, one flip flop, tattoos covering his arms and face, outside, riding his bike, flag on his bike found in the ditch, and no shirt. He is quite the free spirit these day which makes for some pretty hilarious situations. I love everything about him and I must say that 4 is a pretty awesome age. Boys will be boys.