I feel like I have won the lottery

Today I completely feel like I have won the lottery. We went to speech therapy last week and Carter graduated!! He was able to show the therapist he can successfully eat by mouth 10+ items in each of these categories - protein, carbohydrates and fruits and vegetables. She even hummed the graduation song for him as he was leaving!! We are so proud of Carter - to think that one year ago he was being tube fed with no hope of ever taking a bottle and talk of putting in a G-tube.............

Yesterday, we went to the cardiologist and after an EKG and a check up Dr. Puchalski said we don't need to come back to the clinic for another year!! We did schedule a sedated echo on January 12 to check his pressures and see if by chance there is hope for coming off oxygen at night. We are going to do the echo after a sleep study which we hope to have done in December. Between these two procedures we should know all we need to in regards to how much Carter needs his oxygen still. But still - a whole year without a cardiology appointments is exciting for us........

And thanks to Lacey's post about H1N1 shots being available at Primary Children's we finally got Carter a much sought after H1N1 shot! It was very easy to do if you have an appointment somewhere in the hospital and the doctor you see will sign a form saying your child needs the shot. The cardiologist was more than happy to sign the paper and we were out of the hospital with our shot in five minutes!! Yay!!

This is what happens to Carter after a long morning and a drive home from the hospital

Zonked!!

Today we got a phone call from our insurance company and they have approved Carter for 5 injections of Synagis (the RSV shot). To those of you who read this blog and don't know what this is - it is a vaccine for RSV given only to high risk babies/toddlers and can not be administered unless the doctor has prior authorization from the insurance company. It is given every 28 days and each shot costs $2500 - which is why it must be pre-approved.We are thrilled after getting a letter over the weekend saying more information was required and Carter may not qualify this year......

And I am also grateful because this is coming to our neighborhood - 3 miles away - and it is almost done!! I can't wait - it is within walking distance from my house!!!!!!!


And finally, I mostly feel like I have won the lottery because I have met so many new friends in this blogging world. I am definitely lucky and we are so grateful for the support and ideas we get from all of you. If you follow this blog (even if you don't comment) and would like to receive a special Christmas card from our Carter man - send me an email with your full name and address. I have gotten a few of yours as I have emailed my address out to a few. It will be so fun to send and receive cards from so many people we have met over the last year and a half. My email is kristi6175@yahoo.com - I hope to hear from you!!

Pondering.....

Now all of you don't fall out of your chairs because I have been missing in action in the blogging world for a few weeks. Now two posts in two days......

So I have been thinking a lot lately. I sing in a choir and we are getting ready to perform and one of the songs we have been asked to sing is "Some Children See Him." If you aren't familiar with the words - let me share.

Some Children See Him

Some children see Him lily white, the baby Jesus born this night.
Some children see Him lily white, with tresses soft and fair.
Some children see Him bronzed and brown, the Lord of Heaven to earth come down.
Some children see Him bronzed and brown, with dark and heavy hair.

Some children see Him almond eyed, this Savior whom we kneel beside.
Some children see Him almond eyed, with skin of yellow hue.
Some children see Him dark as they, sweet Mary's Son to whom we pray.
Some children see him dark as they, and ah! they love Him, too.

The children in each different place will see the baby Jesus' face like theirs but bright with heavenly grace, and filled with holy light.
Oh lay aside each earthly thing and with thy heart as offering, come worship now the infant King.
'Tis love that's born tonight.
'Tis love that's born tonight.

So tonight we are practicing and we start singing this song and I start bawling - big time. Maybe because my heart is in completely different place than it was two years ago. Maybe because as we are singing about some children seeing him with almond eyes - I think of this magical boy who has graced our life and who has almond eyes. I wonder how Carter sees Him - because I know he does see Him. He can see Him more than you or I - because he was sent here for a different reason.

I have been amazed by how many people comment on my little guy - random people in the grocery store or at the post office. People who you wouldn't think would notice a little short guy hanging out with his Mom. Yet everywhere we go, we are stopped. And every time we are stopped I often wonder if they just see a cute boy with a really big smile - or if they can see into his spirit and feel the love of Christ. I wonder if they can see the down syndrome or if they are blinded by his love.

When I got home from choir I sat down to visit my blogroll and I went over to my friend's blog who wrote about Carter today. Take a minute to go over and read how Carter can change her day. Thank you for your wonderful way of showing the world what it is like to have this little man in our life. You are a great friend and I will always bring him over to visit - to cheer you up on bad days! (Is this why you have me do projects? I am beginning to catch on!!!) He is our little piece of heaven here on earth - and we are glad he is here!

Halloween Pics and New Tricks

We had a super fun halloween and hope all of you did as well. We visited the pumpkin patch to pick out the perfect pumpkins.....

We thought this pumpkin was pretty cute!! So we of course paid for him. He wasn't too expensive so we took him (actually I take that back - he is by far our most expensive - but we will keep him anyway!).

We found a tractor in the pumpkin patch (conveniently posed for pictures) so of course we stopped and took a few.

He was so happy to be outside amongst the hay, pumpkins and tractors. The other kids were less joyous because it was kind of cold. Their smiles are a little strained!

But they humored me and let me take a few cute pictures. The next day we dressed up our kids and went out trick or treating! Carter didn't go last year so this was his very first year out in the neighborhood - we got a lot of comments on his cute costume!

Isn't he the cutest vampire you have ever seen? And in case you can't see them well - here is a close up of his fangs!!
It is hard to keep in a binky when your smile is so big!! Thanks Jolene for making a really cute cape in size XXS - it worked out perfectly! You are so awesome! And thanks Misty for the tip on where to find the fangs - it made the costume perfect.

Parker was a vampire as well - black hair is definitely different for Parker.

Ashleigh was our princess - she has always been a princess. She looked beautiful and had a fun time walking around the neighborhood with the vampires!

Here is our Halloween group shot......

Since Halloween Carter has amazed us with his new tricks. His new tricks are pulling himself up to standing at the couch and this.......




He has been working hard. His therapist started working with him on the stairs two weeks ago - much to my disappointment. I have been happy not having to worry about the stairs yet - but she thought otherwise and decided to show him what he could do. Two days ago he crawled over to the stairs by himself and went up - then went up again - and again - and again. Now he does it all the time and he thinks he is pretty smart. This is such a huge accomplishment for him - we couldn't be more proud. It truly is the little things in life that matter!

a VERY LONG overdue post

Oh it's been a long time since I posted. We have been so busy with a whole bunch of stuff I just haven't had the time to catch up the blog or read and comment on other peoples blogs. So here is a synopsis of what we have been up to lately. I've decided that being busy comes in waves - waves of very busy - waves of not so busy. Since about September 25 we have been non stop busy. I can't wait for the next wave of not so busy to hit.........

Alan had a conference up at Deer Valley Resort in Park City so we headed up there one night to stay with him. The hotel was super awesome and we had a great time. Unfortunately once we got there and unpacked I realized I had brought all of the necessary medical equipment except for the oxygen cannula. This obviously is necessary for transporting the oxygen from the tank to the nose. At about 1:00 in the morning I was so frustrated with the stupid oxygen alarm going off because he was dropping into the low 80's I told Alan I wanted to just drive home with Carter. We then decided one night with oxygen in the low 80's probably wouldn't hurt Carter so we reset the alarm for it to beep at 80 and got a few hours of sleep.

The next morning we woke up early and split up. Alan went with Parker to his soccer game because he had the treats for the day and I headed over to the Buddy Walk. The Buddy Walk is for everyone with Down Syndrome and their team of walkers. Our team of walkers consisted of me, Ashleigh and Carter. We weren't sure until the last minute we would even be able to go to the buddy walk so we just went. Next year we want to get a whole big team together and spend all day up there! We had super fun at the carnival portion, walked, waited for food, ate lunch, met up with a few blogging friends and then Carter, Ashleigh and I headed home to get ready for Parker's friend birthday party.


Later that afternoon we had seven boys over for a birthday party for Parker. We debated about what to do - what would be fun for 11 and 12 year old boys. Parker wanted to watch a movie, I wasn't sure that would be enough fun. Late one night it hit me that we should take the boys geocaching. The party turned out to be a huge hit. We took them all geocaching and found six of the eight caches. ALL the boys absolutely loved it - they want to go again. Several moms have told me since then that all their boys talked about for days was the geocaching. So if you have to throw a party for some tween/teenagers - geocaching is super fun!

After all that fun we heard from our general surgeon. While Carter was under during his surgery they had taken a rectal biopsy to rule out Hirschsprungs Disease. The biopsy came back negative; however, he said there was an excessive amount of mucus in the colon which could indicate Cystic Fibrosis. So another test was scheduled - a sweat test. We bundled Carter up and headed up to Primary's again. We did the sweat test and they couldn't get enough sweat to test. So we went up and visited Dr. Barnhardt and he said to go back down and try one more time - if it didn't work we would just need to follow up at the pediatrician's office. Down we went to the lab again - they shocked his arms to start the sweat - put saran wrap all over his forearms - then they put hot packs on both arms - wrapped each arm up with koflex - brought down three warmed blankets which we wrapped him in like a papoose and then we told him to sweat away. He was so warm he went to sleep.......but he didn't sweat. So no test results. The surgeon thinks it is unlikely that he has CF - his pediatrician doesn't think he has it either because he hasn't had a lot of pneumonias - so our decision is to wait until July when it is really, really hot and have the test redone then. The people walking past us in the hall at Primary's must have wondered what in the world I was doing to this poor kid....

Then we hit UEA weekend so we spent a day up at Lagoon again and had a blast. No one was
there with us so we just walked on every ride - it was heavenly. With Ashleigh's tennis shoes on she hit the 46 inch mark and so she had a blast trying all the "big kid" rides - roller coasters and such.

The next day we got ready for Ashleigh's birthday and my birthday. Ashleigh turned six and had a great birthday. We have our parties together because our birthdays are back to back. It's fun to share parties and cakes and all that good stuff!!

Later that night Alan and Parker went out for a boys night and returned home really late - like 11:45 p.m. late and Alan told me something was outside. He said your friends got you good. So out we go to the front yard and there are signs and all sorts of stuff outside decorating the front yard - because my birthday was Sunday. We walked around and found the perpetrators car (hee!hee!) and knew they were still around and had been interrupted. We then came in side and turned off all the lights and pretended to go to bed and then proceeded to watch the three bandits finish the job (S, S, and E - you know who you are!!!). In the morning we got up to this - unfortunately it had rained during the night so some of it was ruined. You guys are very creative and you put a lot of work into it - sorry you got interrupted - but I am sure it made for a lot of fun laughs there in the neighbors yard. Thanks for thinking of me - you guys are the best - even if I did have to clean up messy papers!! Now the whole neighborhood knows how old I am and I guess I am now adding my blogging buddies to that list!

After cleaning up the mess, we ended up taking a beautiful drive to see the fall colors. These pictures are up East Canyon and it was gorgeous. Carter was less than thrilled to be out in nature enjoying the fall leaves - but it makes a cute picture anyway.
We had Carter's well child check and he still weighs 19 pounds 8 ounces and is 29 inches long. We have been stuck at that weight forever - wish we could get him up over 20 pounds. So for right now the doctor says he still needs to ride backwards in the car - until we can pack 8 more ounces on him. Everything else looked good and we are going to talk to a nutritionist to see if we can't pork him up a little.

Carter went up to see Dr. Muntz for his follow up ear tube, tonsil and adenoid appointment and all looked good there. He still failed another hearing test so we have to go do another one on a different day. They think he may have failed because he was sucking his binky and the movement of his jaw may have been just enough to interfere with the test results. One of these days he is bound to pass one of these tests.

Parker finished up his soccer season on Saturday and his team is undefeated. It was an awesome season, beautiful weather, good players, fun games and Parker had a blast. While we will miss soccer - I am glad that Saturday mornings will now be free for other things!! Way to go silverbacks!!


Today we went to Justin's house and had a play group with a whole bunch of kids - all with down syndrome. It was so fun to see some families again and to meet new ones too! Thanks Emily for the super fun day - we need to do it again soon! We loved swapping stories and sharing that special bond we all have. I am so lucky to have Carter - because of him I have met so many wonderful new friends!! We look forward to many years of friendship with all of you!

Are they not the cutest - all playing by each other - but not with each other!

Well if you have read all the way down to here congratulations! Now on to reading everyone's blogs, writing comments and in general trying to catch up on the last three weeks!! I haven't forgotten any of you - I will catch up at some point!

Should I be worried?

Do you think I should be worried if my cute Kindergarten age daughter comes home with a book entitled "All About Me" and this is on the My Family page?

So she is only claiming that she has one brother - probably Carter - because I think most days she doesn't want to claim Parker. But she says she has six sisters - where did that come from? I'd like to know where those other six girls are because there are some days I could use a few more babysitters.

I'll keep looking but I just don't think there are six more girls in this house........and if there are we have really got to move because we have no more room in this house!

A wonderful saturday evening

A little Ben & Jerry's Half Baked Ice Cream - a game of memory - what else do you need? A cute boy with an infectious smile who makes us laugh (and is also quite good at making messes)

Carter is doing awesome. We have already noticed a difference in his hearing and balance - ear tubes are amazing.

We haven't yet noticed a difference in his sleeping other than he still really HATES oxygen in his nose and fights even harder to get it out at night.

From the very first bottle he took post surgery he sucked so hard that he collapsed the nipple and I was really surprised. He had never done that before - and now he does it every time. There must be much more air moving through his airway to be able to do that! Way to go little guy.

He has had some slightly ornery moments - but nothing that can compare to other babies ornery moments. Since surgery he has also cut two more teeth so who can blame him from being a little cranky? His four top teeth have all come in in the last month.

This boy has been busy!! And he would like me to add that he LOVES ice cream - so if you are looking for an ice cream buddy - there is one available at my house!

Guess who's home?

Carter is home!! Yay!!

We talked to the nurse this morning and she said that Carter was absolutely refusing to eat. So I got ready and decided to head up to the hospital to see my little man. We missed him last night - it was lonely around here. We also missed the constant hum of the oxygen concentrator - guess we could have turned it on - but we didn't.

As I was driving up there I called again and the nurse said they had just received orders to transfer him up to the floor because he wouldn't eat. I got to the hospital just in time to walk him down the hall into his new room. He got all situated and then I had a little heart to heart mother to son talk that went something like this:

"Carter, you know if you drink your bottle they will probably let you come home."

Carter shakes his head no.

"Carter how about you drink a bottle and maybe you can come home with Mommy."

Carter shakes his head no - he is pretty good at this.

Mom tells the nurse, "Why don't you heat up some milk and I will try to feed him his bottle."

Carter shakes his head no.

Mom gets the warm milk and proceeds to give him his bottle. Guess who drank it all gone? The very same boy who said no. See in his world shaking his head means no and yes.

Three hours later Mom gets brave and orders Mac and cheese, jell-o squares, and ice cream.

Guess who eats half the mac and cheese, some jell-o and ALL the ice cream (cause he is like his mom). Yep Carter.

Mom says to the nurse at 4:00 - "Hey if the only reason we are here is because Carter won't eat - how about we go home because he is eating?"

Nurse says, "If he will drink one more bottle I will call the surgeon and ask if you can go home."

Good enough for me - could you please bring me a bottle of warm milk? Granted he just finished eating all that food - but I know time is running out......

Guess who drank 7 out of 8 ounces? Yep......

Mom says to the nurse, "OK he drank almost all of his bottle can you call the surgeon?"

She says, "Sure, but it is almost 5 and I don't know if there is anyone in the hospital who can discharge - but I will try it anyway."

After finding out that between the transfer from the PICU unit to the IMSU Carter was lost in the shuffle and no one was following him - we finally got a hold of a nice resident. He came in and asked repeatedly if we were sure that Dr. Muntz was the surgeon who operated and were we sure that happened yesterday? What? Of course I am sure. He finally had to call Dr. Muntz himself and over the phone got enough information that we were allowed to come home. Phew!!

We arrived home just after 7:00 and couldn't be more happy. We are exhausted but happy to be here. Thanks for all the prayers and support.

Surgery is done - all is well

(Yay - another surgery!!)

Carter is such a little trooper. We got up bright and early and started out the day with a bang! After getting his cute PJ's on we headed over to meet with the anesthesiologist and the surgeons. Consulting with them on all the procedures was fun and then we were off......

(He is so grown up sitting in a big chair)

One concern I had was that the anesthesiologist had mentioned back in February that he had to use an extremely small tube to intubate Carter. I mentioned this to the new anesthesiologist today and he was fabulous - he went back and looked at Carter's records and found out that the tube they had used in August and December of last year would not fit down his throat in February. He was concerned and went and talked to Dr. Muntz (the Ear, Nose Throat doctor). They decided that while they were in doing the procedure that they wanted to do a bronchoscopy and a laryngoscopy to see if they could find out why there was a change in his airway like that. A few more initials to consent to the added procedures and Carter was taken away into the operating room.

(Don't you just want to give him a squeeze?)

One hour and fifteen minutes later - Carter was all done. What we found out was interesting. Carter's tonsils were much larger than he had thought because they were long and deep. His adenoids were 80% obstructive in his airway. Hopefully those two things will help a ton on his breathing issues. They inserted the tubes into his ears - his right one went well - the left ear canal is so small they had to use a micro tube. This tube may only last Carter 6-9 months before it will need to be replaced. They also cleaned out all the gunk out of his ears and there should be a drastic improvement in his hearing.

Dr. Muntz also found a cyst in his airway which is why the tube that fit in December would not fit in February. He was able to cut it off and drain it and we hope it won't grow back - but there is always that possibility.

The skin tag removal was a piece of cake and there weren't any fistulas - so that was even better news.

Right now he is sleeping peacefully (with some help from meds). He has been awake and immediately wanted to sit up in bed - none of this laying down on the job business.

(Sleeping so peacefully)

Thanks so much for your prayers and support and we will continue to update as things progress. The nurses have already fallen in love with this cute little man - and an added bonus is that he is so easy to take care of!

(Just me and my cute little man!)

Surgery is scheduled for tomorrow

I don't know why we are always so lucky (not) but Carter always seems to be the first surgery of the day. The hospital just called and he is scheduled for an 8:15 surgery which means we get to be at the hospital at 6:45 a.m. I am so not an early morning person and don't like these early morning surgeries - and so far he is 3 out of 4 at being the first of the day. I guess I will think positive and hopefully this early surgery means he will get to come home earlier on Saturday.....

Wish us luck and say a few prayers that this will be an easy surgery for him. The thing we hope the most is that he will eat after surgery because that means he will be able to come home. If he won't eat - he can't go home. So a few prayers that he will feel comfortable enough to eat will be very much appreciated.

Thanks so much in advance for your support and prayers - we know prayers are heard and answered. We will keep the blog updated tomorrow as things progress.......

Here is a picture of what Carter does with his Explanation of Benefits from the insurance company. He likes to crinkle them and rip them - smart boy - who wants to deal with all the insurance crap when you could be having fun. I'd like to do this myself with all the medical bills and such.......

Happy Birthday Parker!

So Parker's birthday was actually yesterday - but Mom was totally trying to recover from the weekend and didn't put a post together. (I'll post about his later)

Today I have got my act back together (and my legs) and want to wish my oldest a very Happy Birthday!

Parker is turning twelve this year and we cannot believe he is that old - where did the time go? And I still don't feel old enough to have a twelve year old - but I guess that is a different story.

So in honor of his twelfth birthday here are twelve things we love about Parker

1) We love the way he teaches Carter new tricks (scratching his head, rubbing his tongue on his lips, waving bye-bye). He is completely in love with Carter and we love him for that. One day we are going to get his tricks on video so you can see what Parker has been busy teaching him.

2) We love the way we can joke around with Parker - he can take it and he loves it.

3) We love his sense of humor.

4) We love that he loves all sorts of things: models, sports, books, art, and writing stories.

5) We love that we can now leave him home with the kids while we run a quick errand! He is a great babysitter as long as he doesn't have to put kids to bed - which we are going to work on!

6) We love that he loves to play soccer. Man that kid can kick!

7) We love his creativity (see post about ice and mowing lawn)

8) We love that he is a complete Ute fan (even though the rest of his family is not). He picks everything because of the color - sheets, notebooks, pens, pencils, shirts....you get the picture.

9) We love his laugh!

10) We love his helpfulness - whether it be construction, repair work, housework - he is willing to help out most of the time.

11) We love the friends he chooses - he has awesome friends and they are all great kids!

12) We love that he tries really hard to be good - and most of the time he does pretty good. He is always understanding and even though he sometimes gets the short end of the stick because of Carter - he is totally OK with it. For example - he won't get a friend birthday party for a few weeks as Carter is scheduled for surgery and with recovery and all it probably won't happen until the end of September - but there are no complaints.

We love you Parker and we are so glad you came to our family! Hopefully this next year will be a great one for you!

One year ago today

We took this beautiful baby boy with a perfect chest and a broken heart to the hospital

and dressed him in hospital pajamas.


I lovingly held him in my arms as I gave him hugs and kisses, wished him luck and told him he needed to be a strong boy.

Dad also did the same.

And then we tearfully watched as he entered the operating room doors.

When we saw him six hours later this is what we saw ...


and this


and it was hard. Very hard. But he was all fixed up and everything had gone smoothly.

It is difficult to put into words the emotions of that day. Something we will never forget. We will be forever changed by the experiences we had that day. And while it is hard to look back on this day we are grateful for those who helped us through the journey of open heart surgery. Many family members, friends and acquaintances who helped with kids, kind words, understanding hearts and helping hands to make our journey a little easier. Thank you from the bottom of our "hearts."

And what is even more amazing to us is that five days after open heart surgery, Carter looked like this

and was discharged from the hospital - like nothing had ever happened. These kids who are so medically fragile are also so resilient and strong. Way to go little man.

And now a year later we are grateful even more for our little man who has brought a ray of sunshine into this world and made our home a little brighter. And he proudly shows off his battle wounds with pride!

We love you with all our "hearts"