Monday, November 21, 2011


Carter came home this morning from the hospital. He had a great weekend and was able to get things back to where they were on his own. No cpap or vent at this house. We feel very blessed. More than anything it's nice to have a happy healthy boy. Other than following up with every doctor under the sun and a crazy meds/treatment schedule things should hopefully be uneventful. Thank you for your Prayers.

Friday, November 18, 2011

Seriously so Cute!

Is this not the cutest picture ever? I absolutely LOVE it! We went to visit the little man as a family tonight and Boston wanted to hold him. Needles to say Carter was very happy to have a guitar playing buddy.

*note to self I should not write posts when it's that time of the month and I am a little on the emotional side. Yikes!

Any who things are going better. Much better. There has been zero talk of a Rate thank goodness I about had a heart attack with that one. Some of you might notice in the pic above he is wearing his HME which is what he wears normally. Great sign. His gasses have been so much better. He has been off cpap during the day and on just trach collar during the day. Today they put him on his HME during the day and will do trach collar at night to prepare him for his "home routine". We are saying lots of prayers and crossing our fingers that he has a good gas in the morning and we can high tail it out of there whithin a couple days. If his gas ins't so hot then we will know he needs cpap during the night. You better believe that we have jumped the gun to learn about the machine so we can skip out on the Children's House. With the way the care conferences work out he would be in there at least 10 days. I read the paper work on the machine for a couple hours the other day and got passed off. Sure I know the making of the machine took a genius, but the working of it definitely doesn't. Most people go to the house to get trained on all things trach and for insurance purposes. We have all insurance stuff already worked out and have been doing all the trach stuff for seven months so we definitely don't need the training on that. Pretty much it will be up to the Doc if we have to go there. He does own the place and I'm sure thinks it's best, but on the other hand I think I rank kinda high on his list of parents he likes. At least him telling Trav that and the whole offering me a job thing makes me think that. So if we do have to come home on cpap and I have anything to do with it we will bounce out of there pretty quick. Thank you, Thank you, Thank you for all your prayers. Once again I KNOW there is power in them.

Wednesday, November 16, 2011


We kinda feel like screaming around here. Carter is feeling better. He is getting back into his normal sleep patterns again and is smiling and moving around. The problem is that his blood gasses aren't showing that. A blood gas is basically a sample of his blood that tells how the oxygen and everything else we need in our bodies is working. One of the most important numbers they look at is hi fiO2. It needs to be around 40. When we first went in his was around 60 and it now is around 52-55. They ended up putting him on cpap and bipap a machine that puts positive pressure in his lungs or basically just a continuous flow of air. They have been "experimenting" with his time on and off the machine to see if it would improve his blood gasses. They were almost exactly the same on and off the machine. So after last nights gas being the same they say well we will just continue to try and figure out what he needs and "if we need to we can always just give him a rate". They say this like it's no big deal. A rate means he is back on the ventilator and has a machine breathing for him. They think he has tracheomalicia which is a floppy airway. Why the heck are we just figuring this out now. I have been going to doctors appointments 2-5 days a week for seven months and nobody has noticed this!!!!! I am having a hard time with this one. My son does not need a machine to breathe for him he has been breathing on his own for seven months! What this also means is that if he does end up needing cpap, bipap, or the vent at home we will have to go to Our Children's House for up to two weeks to learn how to use the machine. Remember the half way house that we tried so hard to avoid after his trach surgery well this is the place. We feel that we have always handled everything with Carter's stuff pretty well, but this one is definitely throwing us for a loop and we are having a hard time swallowing it if you can't tell. This is the time we need to start dropping all the medical stuff and progressing with the developmental stuff. We do not want this to happen. It is a HUGE step backwards. It just doesn't make sense Carter seems so much like himself. His breathing is not labored anymore and his lungs are starting to sound clear again. I am not sure what is going on, but I sure hope we figure it out soon. This has been a hard one. I HATE having my baby in the hospital. We all need him home it feels so wrong without him here. Boston keeps asking where Carter is and "is he never coming home?". I hope they can cut the "experimenting" and figure it out because it's driving us crazy! I will try to do a better job updating. Thank you everyone for your love, support, and prayers they are much needed and appreciated.

Thursday, November 10, 2011


Quick update on the little man. When we woke up Monday morning we knew for sure we were goind to be admitted. He was wheezing pretty bad and just didn't look like he felt well and was super sleepy. We headed back to the ER at Childrens. They gave him a treatment and within 20 minutes we were on our way to being admitted. He is in the PICU and doing pretty well. He was diagnosed with a virus that I can't even remember, but it is in the cold family. Unfortunatley it is on the bad end of the line meaning more syptoms and longer recovery. He also has tracheitis which is an infection in his trach most likely he got it from his bacteria from the virus. He is having a ridiculous amount of secretions in his trach from all the fluid build up in his lungs. They have been doing CPT treatments (basically pounding the heck out of his back and chest with their hands) every 1-2 hours to try and break them up. It was really helping so today we started doing IPV tratments which basically is a machine that puffs quick fast puffs of air into his lungs to try and break up the secretions more. Carter loves both treatments and usually falls asleep during them. Don't ask me how because they seriously are pounding so HARD. Overall he is doing ok. Definitely not his happy usualy self. He has given us a couple smile which have been so nice. He is very tired and I think it's safe to say he is board, but when we try to play with him he is just too tired to interact. Poor baby. Now here is a ton of pics fo the cute little guy. After all tomorrow he is 11 months and deserves the blog space.
Grandma D and Carter having a sleepover.
His snugglies have been right by his face the whole time. He LOVES them.
Is that not a pathetic face. So Sad.
One of the happy faces.
Mom and Bobo in our garb coming to visit.
The first smile we had gotten in a couple days.
Did I mention he Loves them.
Try to take his IV out. He eventually did and they kept it out.
The first day he covered his face the WHOLE day.
In the ER covering his face.

Now I NEED to work on my RS lesson which has proved to be a little bit harder under the circumstances. Ha

Saturday, November 5, 2011

Because I KNOW there is power in them

If I am ever asked to or see the need to pray for someone I rarely forget. One of the many blessings that has come from Carter's whole ordeal. So because I KNOW there is power in prayer I am asking for you to join me in prayer.

First off remember nurse Amy? She was one of our favorite nurses by a long shot. If you know how I feel about my babies nurses than you will understand how important she is to us. Well she just got diagnosed with breast cancer. It feels so wrong to have her on the other side of things. She is a single Mom to two kids and they could use your prayers. Please pray for them

Next is a sweet little baby boy who is the son of one of my friends that was on Boston's soccer team. He and Carter are only two weeks apart. He just got diagnosed with stage 4 Neuroblostoma cancer. I can't even imagine what they are going through. I think it would be so hard to have "normal" and then experience the whole hospital scene with your baby. Please pray that the chemo will do it's job.

And lastly please pray for our little Carter. We were in the ER with him on Thursday night. It wasn't anything serious it was more just precautionary. He has a cold/cough and was retracting while breathing. He is also requiring around the clock O2 again which is something he hasn't needed since July. After breathing treatments and a round of steroids we were sent on our way. After talking with Carter's pulminologist he decided that if Carter isn't completely off O2 come Monday morning they will admit him to the hospital. It wouldn't be because he was at serious risk of anything, but it is time he kicked the O2. He would just stay there long enough to get off it. They would basically be doing everything we are doing at home with treatments and steroids, but in larger doses and on an IV drip which is why he would need to be there. Obviously we don't want to end up back in the hospital, but know that it would be a fast pace to get him off them. Please pray that the steroids will do their job and that we will be ok with whatever we need to do.

Thank You so much.

PS. You can follow their stories if you would like. Both are on my side bar. Case Beckham's is a normal blog and Amy Smith's is a Caring Bridge site so follow her journal.


We had a pretty good Halloween. Boston was in Spidey heaven. He couldn't decide between black spiderman, red and blue spiderman, and Batman. They didn't have his size in Batman so he decided that's what Carter should be and he wore both spidey's.

We kicked off the weekend with making cookies and painting pumpkins. I think we are definitely a painting pumpkin family for a while. Boston will not touch the guts and looses interest pretty quick with carving. Painting however he went to town and ended up painting everybody's. Carter on the other had didn't last long and ended up falling asleep on the job.

We also hit up the ward trunk or treat. Carter enjoyed being out and being held. Boston just like last year was interested in the whole trick or treating part and just wanted to pass out candy. He did venture out a little and thanks to Rene' he was able to get and pretty good amount of candy.

On Halloween night however he got the trick or treating down and enjoyed running to peoples doors. I am sure a big part of it had to do with the fact that he got to ring the doorbell. For some reason he loves that. Over all it was a good weekend.


A couple weeks back we headed down to Boerne which is near San Antonio or sani-ani-tonio as Boston calls it. We went to visit Travs brother and family. We had such a good time and the cousins loved playing with each other! My camera died while we were there so for the next little while enjoy instagram pics on the good ole blog. Here was our quick weekend in pictures.
Car ride down both boys did so good. I ended up sitting in the back between the boys for about half the ride there and back. It definitely was a tight squeeze in the civic, but it made Carter happy to have his binki and Boston just wanted me there.
Carter Lovin' and some cookie making
Feeding the ducks. Boston loved Duck bread (also known as the cheapest bread made at walmart) and asks for it all the time now.
Cute cousin time
Playing at the park
Dad being a trooper and climbing ALL over the park with Boston.
Who knew Carter LOVED swings so much.
Cousin time and playing at Uncle B's office

We had such a great time. Things to note were Good food, Emily and I enjoyed a 5 mile run together Saturday morning, seeing B and Em's new place in the making, Boston loving Sydney's bed, and fun times with some of our favorite people. Also something I don't want to forget was the way Carter looked at Uncle B. He looks at the people who were there the first little while of his life so different. Uncle B was no exception. He was there when Carter was born (actually got to see him before I did) and was able to give him a blessing with Trav. We have so many special memories with Uncle B and Auntie Em that involved Carter when he was in the hospital and being with them brought them all back. Awesome!

Preschool Halloween Party

Boston's school had a Halloween party. Parents were invited to come and I was so excited to see him at school and I'm pretty sure he was equally excited to have me there. They did a cute little parade around the playground to show off their costumes. After we went inside and did a couple crafts together and the best part was watching his class put on a little program. He sang the songs well, but looked at the floor most the time. That is until it was time to sing "dem bones" where they stood up and shook their bones. He was shaking like crazy! I loved it! Preschool definitely is Boston's element! He LOVES it there!
1-Boston and Landon making their Fall picture frames 2-Bosotn standing with his scarecrow 3&4- Eating donuts and juice with his class
1-Boston and Mrs. Sae 2-Halloween prade 3-Boston and Mrs. Lorie 4-Bosotn and his buddy Owen