Joy in the Journey

Carter is too cute...and smart

2010-12-21T17:51:00.005-07:00

Ok. I know it's a second post in the same month! Rare? yes. But this was too cute and was going on over and over today...I grabbed the camera and just let it go and watched.

Let me set the stage. The last few weeks, Carter found that the buttons on the TV make the TV do interesting things. Noise, on/off, make it loud, etc.

Ashleigh came home from school (I've been home sick) and wanted to play a Wii game. So we started playing and Carter would turn the TV off. Ashleigh would pull Carter away, turn the TV back on and Carter would get from whatever part of the house Ashleigh moved him to and get back to those fun buttons. Over and over and over between these two. I started to laugh.

Ashleigh then decided to put a box of toys and other stuff in front of the TV to stop Carter from doing his "work." This went on and on and over and over.

I decided this was worth recording and grabbed my camera. Anyway, just watch the video. It's just under 2 minutes.

You see Carter not trying to draw attention to himself as he gets closer and closer and closer to the TV and then he makes his move. After this, Ashleigh stayed close by to stop him (I would have too.) I tried to get her to come back to the couch. This was fun!

Alan (Dad)

P.S. The number of times he turned the TV off was about 15 or so you can see everybody got creative each time. More toys, more not drawing attention to himself, etc.

P.S. Yes we still have our VHS player hooked up that we never use and we have an old TV. We hope we've been very good this year and can get one of those new flat panels.

Ok...fall off your chair....it's a Carter fix for the holidays

2010-12-06T23:01:00.012-07:00

We are SO bad. You'd think we could at least post an update more frequently.

Anyway...let's get to business...and it will be all about Carter.

First, some uniqueness about Carter, besides his extra chromosome.

Carter always sleeps on his stomach sort of. He puts his leg up like a brace...or something and he seems to always have his leg in this "wow that looks uncomfortable" position.

Many of you have seen his modified crawl up on one leg and use his other knee. Anyway, it's cute when he sleeps like this.

And he walks...finally...We were waiting in the pre-op at Primary's when all of a sudden he just took off and started walking. And he hasn't slowed down since.

He thinks he has had his fair share of operations - Dad you're next!

Then of course, surgery is over, he wakes up and smiles...there is no pain he can't smile away...

About 90 minutes earlier, he had tubes placed in his ears and his adenoids removed from his throat. I don't think I would look like this...

Now that he is all better, he can go trick or treating for Halloween. What a cutie cow...

That will have to do it for now. He is growing up and it's nice to have his rough start more behind us and watching our little boy grow. And for those who don't know, Carter is going to be a big brother to a little sister in March. This is going to be fun...

Ok...Dad this time

2010-09-28T21:28:00.006-06:00

We are so bad in updating our blog, but Dad is here to sneak a post in...A very busy summer for the fam. The good news first, Carter no longer has Pulmonary Hypertension so the CPAP machine has been returned...Yea for Carter. We can just keep Carter sleeping in his O2 tent in his crib. What is an O2 tent? Great question. We have a funnel connected to the end of his oxygen line and then cover his crib with a sheet draper over the top. He consistently sleeps in the 90s for his oxygen levels.

This has been a great relief to us. His doc even took a two-night oxygen test where Carter wore a portable pulse-oximeter that recorded his sat levels.

The not so good news is that we're back to surgery in October to remove his adenoids...again...who knew they could grow back and they are not under any warranty so we'll pay to remove them a second time. Here's hoping they don't grow back a third time. They'll also put more tubes in Carter's ears and the same time. It should be a quick surgery and more time in recovery than the surgery is.

I'll leave some of the Taiwan pictures and more tidbits for Kristi to post.

Parker became a teenager last month so we'll see how the next 6 years go for us as parents. Everyone says it's so S C A R Y! He's pretty excited about being "thirteen" and driving in 2 years...yes...he is counting to his learner's permit which he says he will get at 15. We'll see. Ashleigh turns 7 next week and wants to be so grown up. I hope she doesn't grow up too fast. She is a treat to have around the house.

We also spent the first part of August in Yellowstone with Kristi's sister and her family. Carter was able to splash in Yellowstone Lake which he loves. (He loves bath time too and can splash with the rest of them.) We saw lots of deer and buffalo around Hayden Valley but did not see bears or fugitives this time.

We enjoy these little getaways and our cell phones don't work in the park except for around Old Faithful. It's nice when you can't be reached. Do you remember when vacations didn't include cell phones or the Internet?

As you'll see, the ride home lulled the kids to sleep, the boys in the back and Ashleigh in the middle. They sure are cute when they are asleep.

Some of you may already know but Carter has a new nickname...Tornado... He scoots around the house from place to place and tears it apart. Whether it is a garbage can, DVDs, newspaper, mom's work, dad's work, the kids homework, unloading kitchen drawers, throwing toys, dolls, dad's things and mom's things down stairs, etc. I think we spend more time cleaning up after him than pretty much anything else. And just like a tornado, portions of the house get thrashed and other parts untouched.

We went to the state fair earlier in September and got a picture of all three Anderson "carrots." What a cute bunch of kids.

Carter is now in nursery at church (at least during non-RSV season) for now and he enjoys playing with the other kids. The bubbles and the songs are his most fun things. He has a helper for him to make sure he doesn't get trampled by the others and since he loves to keep putting things in his mouth, the helper "helps" him pace his food intake.

Well, I think that is enough from me. We are grateful we still are working and looking for the economy to rebound. We're doing our share by finishing our basement...for the 7th or 8th year now. I'm committed to getting it finished while the snow flies and keeps us more indoors.

Love you all,
Alan & Kristi and the kids

Don't fall off your chair - it is an update

2010-07-23T10:21:00.009-06:00

I guess I have been on a blog vacation. What with it being two months since I last posted. I didn't mean to go on a blog vacation - it just sort of happened with everything happening around here. A nice friend reminded me that I do indeed have a blog and it was in need of some attention - so here we go!

We have been busy. Places to go, people to see, things to do, appointments to keep and everything in between.

Parker with his 6th grade teacher Mrs Casdorph

Parker is happy to have finished sixth grade and is even more excited to enter the world of Junior High. While he is still going to the same school - he does get to switch from a white uniform shirt to a blue uniform shirt to signal the big change from elementary school to junior high. We are proud of his grades - he did much better fourth quarter than in previous quarters so that is GOOD!

Ashleigh with her kindergarten teacher Mrs Odulio

Ashleigh with her kindergarten teacher Mrs Cope

Ashleigh finished Kindergarten and is thrilled that she will get to go to school ALL DAY next year. Mom is kind of mixed on that feeling - I will miss the times we had just her, Carter and I. But she is excited to learn more things, eat lunch at school and stay all day. I will not miss the 11 am pickup every single day - that gets old really fast because it breaks up the day so much!

Carter has just been keeping us on our toes. We have had liftoff in the walking department. He can now stand up in the middle of the room and then take steps. So far about 10 steps is the farthest he has gotten. (There are two short video clips at the end of the blog post where we tried to capture him walking - he of course will not show off while the camera is rolling!!) While this is so good for him to be learning - we are having to childproof even more because when he stands up he is much taller and can reach stuff on the edges of tables and counters. He still specializes in making any and all sort of messes around the house. I have yet to have a clean house when anybody happens to stop over. Please don't judge my cleaning abilities on the way my house looks on any given day. I once saw a sign I think I need to hang in my house. "My house was clean yesterday - sorry you missed it!"

The CPAP thing is not going well at all - we are to the point we are going to ask for a sedative. He will only wear it for an hour and then as soon as he realizes it is on - he takes it off. He almost goes through an anxiety/panic attack when trying to get the thing off - it is kind of scary. But we are still trying......

We finally got a passing hearing test in his right ear - that is quite an accomplishment for him. He has failed several over the last couple of years. He is still failing in his left ear - but the hearing technician measured fluid in there and suggested we go back to the ENT to check the tube. The left tube is gone - so he drained out the fluid from the ear and we have an appointment in the middle of September to go back. If fluid has built up again in the left ear we will schedule another surgery to place another tube. While at this doctor appointment we also found out he had an ear infection in the right ear - didn't even know it!

Alan and I had the opportunity to spend 12 days in Taiwan without kids and it was wonderful. We were visiting a sister city there and we had a great time. I will post another several updates with pictures from that vacation - I only took 1200 pictures so I will have to find the best ones to post.

My last instruction to Carter was, "Please don't get sick." My parents were so nice to take all of our kids for the entire time - I just hoped Carter would cooperate. He is so much harder to take care of when he is sick with his oxygen needs and alarms. Well a few days into our vacation, we found out Carter had been to the doctor and had been diagnosed with pneumonia. (This and croup are the two hardest illnesses to manage with Carter). A round of antibiotics and breathing treatments were ordered and we were assured we shouldn't worry - that he was doing fine. I of course knew that this meant his pulse oximeter would have been beeping several times a night as his oxygen levels would have been all over the place. I felt bad for my parents because it is not easy. We talked to them several more times over the course of the vacation and when we saw him (we were skyping with cameras so we could see our kids and they could see us) we could tell he was not feeling good - his eyes looked sick.

On our flight home we had a layover in Los Angeles and we called my parents from there to tell them we had made it back to the United States. We couldn't get a hold of anyone, but my Dad called right before we boarded the plane and told us that Carter had to be taken to Primary Children's Medical Center that day and that he had been admitted. His diagnosis was viral pneumonia and bronchiolitis. They had admitted him because his oxygen levels were too hard to maintain and he needed to be watched.

We flew our last two hours back to Salt Lake - got off the plane - claimed our luggage and drove straight to the hospital. After spending 21 hours either in the air or in an airport we were exhausted. I decided to spend the night with Carter in the hospital - I already had all my luggage so I grabbed a few necessities and proceeded to have a sleepover with Carter. Except that I couldn't sleep because I was still on Taiwan time (14 hours ahead of Utah time) - I was exhausted. Not to mention that in two rooms by us there were newborns who cried all night and we were also behind the nurses station so we listened to alarms all night. The next morning the doctor came in and said he wanted to watch him a little longer and then he would discharge him - that was great news! I sat in that small room most of the morning and I was going stir crazy - I had been cooped up on an airplane for so long and then to be stuck in a small hospital room was almost too much for me. Add to that six hours of sleep in the last 48 hours and it was not a good combination. I had to get out of there. When they came in at 2:00 in the afternoon to get him ready for discharge I was more than ready to run out of the hospital doors into some fresh air.

The next few days were hard. He was back on oxygen 24/7 and his alarms would beep at least 20-25 times a night. I couldn't get my body switched back to Utah time because I couldn't sleep - I was averaging 4 hours a night of very interrupted sleep. After feeling like a zombie for a week and not being able to function very well - I asked Alan to please take one night so I could sleep and get my body clock turned back around. That night I was able to sleep for seven hours straight and when I woke up it was so much better. That was all I needed!

Carter is doing much better now - we have managed to get him off oxygen during the day. He is still sleeping with a cannula in his nose - we cannot do the oxygen tent when he requires more oxygen. We can't wait to get him back to normal. Last night he only beeped twice and it didn't beep long enough to have to get up to check on him! Slowly and surely he is improving and we are grateful that the hospital stay was brief!

It might be a while before my parents want to have a sleepover with Carter though! They were such good sports to have to go through all of that with Carter. They have now done most of what I have done - hospital stays, multiple doctor's appointments, arranging home medical equipment and the very sleepless nights! Thank you so much from the bottom of our hearts for taking such great care of our kids and for allowing us a vacation! Sorry Carter didn't obey my instructions - I will have a chat with him about that before we have him come stay with you again! What would we ever do without parents?

Video clips
First one is what happens when you would like him to show off his walking skills and he decides to be a clown instead - typical Carter!!
Second video is a very short clip where you can actually see steps - not like the long walks he can do - he wouldn't cooperate with the camera on!!

I have been reading some blog posts by all of you - I have some serious catch up to do but I will get to all of them soon!

Utah Weather???

2010-05-25T14:53:00.003-06:00

Yesterday

24 hours later

Given the choice - I think I will take option two!
My kids are out of school in 5 days - we do not need anymore snow! They want to wear shorts and go swimming!

I looked out the window and what did I see?

2010-05-22T15:08:00.004-06:00

I looked out the window while I was on the phone with my sister and what did I see? Something big running across the brick ledge on my house. Scared me to death.

Let me explain: I don't do rodents of any kind, anywhere near or in my house. The few times we have had a mouse is certainly a cause for alarm. Last time we had a mouse come in from the garage, myself, Parker and Ashleigh all ended up standing up on our kitchen counter while we watched the mouse try to get out the kitchen door which was closed. (It was a scene that if captured on video probably would have won the $100,000 grand prize on America's Funniest Home Videos). They scare me - I do not like them at all.

I didn't know what I had just seen - all I knew was it was big, had a long tail, and I didn't know where it had gone. So we sat and watched and pretty soon he was camped out on my van tire. He would sit there and sit there - if someone walked past or a car went down the street he would run up into the engine and then would come back to the tire when he felt safe.

We watched him for the longest time before we went and checked to see if our neighbor knew what it was. I thought it looked like a very large pot gut that you normally see in the mountains. Except those guys don't have long bushy tails. Then we thought gopher - but it was also the wrong tail. Parker guessed a big fluffy rat (are there even such things? I hope not). We weren't sure what we had.

When Alan got home and he was still hanging out in our van we decided to call animal control. Course by the time they showed up an hour later he had deserted his post on the tire. We did show the animal control guy the pictures and the verdict was:

A VERY LARGE SQUIRREL (who must have had a broken tail because it never curled up against his back like normal). It was by far the largest squirrel I have ever seen.

See that long tail? The picture just doesn't really show how big he was. But when he came over to eat some of my flowers is when I began to think he might be a squirrel - he just kind of had a squirrel pose there.

Certainly made for an exciting afternoon. I think this is the first time in all my years living here that I have seen a squirrel - we don't really live in a place you would see squirrels. Of course with that being said - we do live next to a field where a red fox lives. He is cool to see - but it is odd even to me to see a fox on the way to school in the mornings.

Anyway, if you live in my neighborhood - there is a very large squirrel out there lurking somewhere.

A New Day ...... A New Piece of Equipment

2010-05-14T19:22:00.005-06:00

The CPAP machine was finally ordered and dropped off today. What a mess of insurance hoopla to finally get it here - but it is here and Carter already hates it. We tried it on for less than 30 seconds and he immediately screamed and cried and pulled it off his face.

This is the update on what we have been told:

It is going to take him 2-3 months to even tolerate this machine. (Can you see why???)

It is going to be very tiring and time consuming to get him to tolerate this machine. We are going to want to quit - but we can't. The doctor said to be prepared for a lot of frustration. And she said one of the best times to get him to put it on and leave it on is while he is watching TV - guess we will be watching a lot of TV in the near future. You can't just put it on them at night because when they wake up they will be scared of it - so you have to get them to wear it while they can see it and get used to it.

Either I am camping out in his bedroom or his crib is coming in to ours (our doctor said I will probably be up every 15 minutes putting this thing back on his face). Sounds like fun!! We are also constructing an oxygen tent over his crib which includes a nylon or silk sheet, a funnel, duct tape (lots and lots) and oxygen tubing. I will have to post pictures after I rig up the crib to the specifications we have been given.

If we cannot get him to tolerate the machine in one or two months the doctor will prescribe a sedative to give him in order for him to leave it alone for any period of time.

If this doesn't work and we cannot get him to tolerate it the only option we have left is to trach him. The series of three surgeries told to us by our ENT has been nixed by two doctors after him. They said it is too risky and there is not a big enough chance that it could fix him to even entertain the idea of doing them.

Please pray that he will be able to tolerate this - we need this to work. And if you read this blog and have been through this with your child - please let me know of any advice you can think of that helped you get through this. We really really could use the help!! Thanks so much for loving and praying for our little guy!

Also, Carter's friend Ella is in need of some special prayers too. She was diagnosed with leukemia a week ago and has already had her first round of chemo. She is the cutest little thing - go check out her blog. You can click on her button on the side of this blog! You will just fall in love with her - she reminds me so much of Carter and his silly faces and endless smiles!

Poor Poor Cookie Monster

2010-05-04T21:12:00.004-06:00

Remember two posts ago when Carter got that cute Chattering Cookie Monster to go with Chattering Elmo?

It all started about two weeks ago when Carter discovered this white porcelain thing in the bathroom. He has never noticed this before - but he found it and thought it was a pretty neat little contraption. Didn't do much but touch it and check it out.

Fast forward a couple of days.........

An open bathroom door.........

A crawling Carter.........

A chattering Cookie Monster.........

The white porcelain swimming pool left open.......

A mom in a rush to get out the door who runs into her bedroom for just a second......

Only to return to the bathroom to see poor chattering cookie monster taking a swim.......

IN THE TOILET........

Not good.........

I managed to save him before he drowned..........

But after washing him with soap..........

His voice box was damaged beyond repair.........

And poor poor cookie monster was chattering no more.

Such a sad day. And the new rule in the Anderson household? Keep all bathroom doors shut and keep all toilet lids down - because we evidently like to learn things the hard way!! We are going to have to go and get a replacement cookie monster to keep our little guy happy! And this time we will try to keep him from swimming in unprotected pools!

And our friend Lacey is having an auction on her blog site. She is trying to raise money to adopt a sweet little girl with down syndrome. Go on over here and check out the cool stuff she is auctioning! We want to help her get this sweet girl out of the orphanage and home to this great family!

Cute Book!

2010-04-16T08:22:00.002-06:00

My sister found this book at the library one day and told me how cute it was. So we went to the library and found it as well. It is a true story about growing up with a sister with Down Syndrome. The author, Nancy Tupper Ling, wrote the story about her friends. The illustrations are amazing - Shennen Bersani captured the characteristics of someone with Down Syndrome so well! It says on the book jacket, "Ms. Bersani's heart-felt illustrations are influenced by the true story of the sisters in the book combined with her own life experience raising her younger sister, who has Down Syndrome. Her art portrays the emotion, love and patience she has gained from her experience." So if anyone out there is looking for a children's story about Down Syndrome - this is a good one! My other kids knew right away it was a story about a girl with Down Syndrome just by looking at the picture on the cover!

Warning - cute birthday pictures ahead!

2010-04-12T10:24:00.010-06:00

My birthday party was a hit - I had so much fun!!

My favorite thing was ripping wrapping paper off the gifts - of course! Only because it involves paper and making a mess - two things I specialize in!! I was delighted with the attention, the wrapping paper and the gifts. However, if the gift contained clothes I would just throw them on the floor - obviously I don't care much for fashion sense.

Because my favorite toy is chattering Elmo - I got a chattering Cookie Monster too! I love it!!

After all the gift fun - we moved on to cake mess!

Memo to my Mom:

Red frosting

plus

black frosting

plus

a two year old

equals

a VERY LARGE mess!

Before mess - don't I look like I love this cake???

The first touch - is it OK to do this? Oh - wait I don't like messes on my fingers.

Hmmmmm - what should I do with this?

Oh look - brother is nearby.........better watch out Parker

This is so much fun - I can't believe my Mom is letting me do this.

I think I will try a spoon - maybe that is less messy!

And the question of the day is:

Did he actually eat his cake? Watch this very short video to find out!

All done - boy that was FUN!

After a quick trip to the bathtub I came back to enjoy some ice cream - that is my favorite!

What a great party! Where is everybody going? I still want to party!!

Oh wait - I think I am really tired!

The cake is done - we are ready to party!

2010-04-09T10:32:00.003-06:00

We are finally celebrating the birthday!

The Elmo cake is done for Carter - we are going to attempt to give him his own cake to demolish this year. Last year he wasn't eating food by mouth so he wouldn't even try his cake. We are hoping this year he will love the cake!

Carter's favorite toy is the chattering Elmo - so we are going with the Elmo theme! Can't wait! Tonight is the night - he finally feels better - we are done with oxygen during the day - the antibiotics are gone - we are excited! Having the family party will be nice because it hasn't felt like his birthday yet!

Because he gets his own cake - I also had to make cake for the rest of us - that is done as well.

New recipe for fudge ribbon cake - looked good and it has cream cheese in it - so it has got to be good. Anything with cream cheese is yummy!

Now that the cakes are done:

We need to wrap the presents

Clean the house

Go to the doctor for his 2 year well child check (and he better be well)

Pick up Parker from soccer practice and attend a parents meeting

And fit dinner somewhere in there........busy day ahead!

Stay tuned for Birthday party pictures!

Happy Happy Birthday to Carter

2010-03-31T23:39:00.002-06:00

(Tried to take a birthday picture of Carter today - but understandably he is not in the mood much for smiling. So I thought I would post one of his cute funny faces! I will have to do birthday pictures when he is feeling better.)

Happy, Happy Birthday to our sweet Carter. We can't believe you are two. We are looking forward to the "terrific two's" because we know we are not going to have "terrible two's." You are such a blessing to so many people who love and care for you. Thank you for choosing us to be your family - we don't know what we would ever do without you! I could go back and reflect upon this day, but I did that last year. If you would like a recap of the day he was born click here.

Stats

2 years old

22 pounds 2 ounces

30 inches if he stretches (yep, he's short)

12 teeth

Still in a size 2 shoe

Signs more, milk, hi/bye, eat, and loves watching Baby Signing Times

Is not quite walking - but cruises along furniture and can crawl fast

Eats everything (except for mashed potatoes - we don't know why)

Has started self feeding in the last two weeks! Yay for picking up Cheerios!
(Although this also has become a problem because I have never had to worry about small parts/toys/crumbs on the floor and now I do - too funny)

Does not drink juice - but loves milk in his bottle and will drink water at meals

Loves to make people smile

Is generally happy all the time

We love you so much little man!!

And sorry for the really long frustrating post earlier this week. It has just been a hard month. But a couple of nights of better sleep and I am feeling much better about things. We are so glad that Carter is at home for his birthday and not stuck in the hospital!

Carter is doing well - we went back to the doctor yesterday and we didn't have to suction him out again. Tomorrow we go in for another synagis shot so the doctor will take another listen. He is still on oxygen during the day - but is doing much better at keeping his saturations higher. As soon as he is feeling better we will have his party - complete with cake, presents, and fun! We can't wait!

Now if someone could please turn off the snowing machine - that would be great. This house has ordered spring - if someone else wants winter - please keep it at your house!!

Stop the ride - I want to get off!!

2010-03-29T16:35:00.002-06:00

Sleep Doctor Visit

Can I just say March has pretty much been terrible here at the Anderson household? It started out on the fifth with a sleep doctor visit. One visit we have been anticipating, one where more questions would get answered and hopefully we would get somewhere. Basically, we saw the MRI pictures and viewed the sleep study results. The MRI pictures are awful - he completely obstructs in several areas. And the sleep study results show that we still have many issues.

So over the course of the three hour appointment we decided to step back and go a different direction. The doctor said we could do the soft palate surgery (the uvulaphar..........you know the really long word) but he said we would probably then have to do the tongue reduction surgery and then the surgery with the cartilidge from the ear to make the airway bigger. He doesn't think one surgery will fix it - he thinks he will take all three - and then after that he gives it a 40% chance of making a difference. Not good odds at all - and three terrible surgeries - all with long recoveries - and then what? A 40% chance - doesn't sound like anything we want to pursue at this time.

So we are now going with the CPAP idea. This will open his airway when he is sleeping and will get rid of the apnea. He says the oxygen doesn't even really help him because when his airway is obstructed it basically goes in his nose and comes out his mouth. So we are trying to work with our insurance to get that ordered - but that is a whole different story - because we can't seem to get CPAP from our home health provider right now so we have to switch and yada yada yada - more jumping through hoops and so on and so forth. When we finally get the CPAP mask we are going to take a month of just letting Carter play with it - put it by his face - put it on his face when he is ready to go to sleep but then taking it right back off. After a month we will schedule the sleep study and actually hook it up and set the levels and see if he can tolerate it at night. We are praying he will tolerate it - because if he doesn't we are going to have to start the surgeries. We would have better luck with the surgeries if we could get him bigger - so that is the idea - have him on CPAP for several years until his airway has grown and see then if the surgeries would make a difference.

Picture of how CPAP would open the airway

A visit to the ER

Then the next day he started getting sick - not fun - but a little fever - a slight cough and of course when it is a respiratory thing it gets out of hand fast with Carter. With pulmonary hypertension and severe obstructive sleep apnea - we always have lung/airway issues. By Sunday night - we made the decision to go to the ER. Off we drove - walked into the ER - the nurse who looks at the patient when you bring them in took one look at him - said if he drops below 90 on his pulse ox let me know - but I am going to find you a place immediately. I knew at this point he had croup - it was bad - a seal like bark - gets worse at night - his oxygen need went way up. We were back in the triage room within two minutes. The nurse in there took one listen and immediately called the respiratory therapist - he came and looked and said - I am going to find you a room right now - you are not going back into the waiting room. Within three minutes they had found us a room and had us situated. That is what I call service at the ER. It was amazing - so fast. (I wonder what all those people in the waiting room thought when we walked right in and never came back out - I am sure it didn't seem fair to them). We stayed for a few hours - got him some steroids to open his airway and they decided to send him home because we were already prepared in the oxygen dept. They did a viral panel and we later found out that the croup started out as Influenza A.

So the croup stayed around a few days - the nights were long but we managed to get him better. Just as Carter was starting to feel better, Ashleigh got the flu and she was down for several days. Then Ashleigh started to feel better and Parker got sick - then Ashleigh got sick again. Then we got all the kids better and I got the flu. This went on for two and a half weeks!

Last week we were all on the mend and feeling great when Carter got a random fever. Then another, and another, then a cough on Saturday - a really bad Saturday night where at one point we turned the oxygen up to 5 liters to get him to sat above 90. Normal oxygen level for him is 1/2 a liter - so 5 was huge. Sunday he slept a lot and wouldn't eat. We called the on call pediatrician at 10 last night when we couldn't get his oxygen turned down below 3 liters without him falling into the 80's on his saturations. She wanted us to go straight to the ER for a chest xray - I fought it. It was late, we had oxygen and I thought if we could at least make it through the night we could see the doctor in the morning - so Carter and I had a sleepover in the family room. Besides we had just visited the ER three weeks earlier - isn't that enough for one month?

Sick again?

We called the doctor first thing this morning and got an appointment. One listen and he suggested we suction him out - so they did - and he hated it - but he sounded so much better when they were done. We still had him on a liter of oxygen (even though he was awake - normally he isn't on oxygen when he is awake) and still he was having a hard time keep his saturations above 90. The doctor came back in after they had suctioned - took a listen - said, "He sounds like a new man - completely different without all that gunk in there. And he has pneumonia in his right lung." Perfect - that sounds like just what we needed around here. Something else. So we have got him on antibiotics, oxygen 24/7, and we go back to the doctor tomorrow. He said we should be grateful we already had oxygen or he would be sending us straight to Primary's - so for that I am thankful. He is pretty sure with regular visits to the doctor and us keeping a watch on his oxygen levels - we will be able to avoid a hospital stay.

So what have I managed to get done this month? Absolutely nothing much! I have pretty much been homebound the entire month with one sick kid or another. But shall we look at the positives?

I probably saved us a lot of money because I couldn't leave the house to go shopping.

We came up with creative dinners when I couldn't even leave the house to go grocery shopping.

(Just kidding - it wasn't this bad!!)

I managed to clean and purge items from several areas in my house - because I was bored and couldn't go anywhere.

(Disclaimer - not a picture of my actual house - although I wouldn't mind having a home office that looks like this)

I got caught up on several shows I had DVR'd (is that a word?) for later watching.

I watched a lot of HGTV and am certain that I can now completely decorate my house all by myself (those Do It Yourself shows are great!) I could probably even build furniture now that I have all this knowledge!

(This can be the spring project -looks nice doesn't it?)

So now as I begin this week I guess I will have to think of new things to do because I was going to:

Plan a Birthday Party for Carter

Bake a cake for Carter

(This would be a cute cake - am I that ambitious?)

Buy presents for Carter

And instead I will be at home cuddling with my tethered little boy who is having a birthday on Wednesday. But we will have fun on his birthday anyway - we will just save the party, presents and cake until he feels completely better and will enjoy the day. Besides at this age he doesn't even know it is his birthday so any day with a party will be a great day for him.

So there it is - Kristi's terrible horrible, no good very bad month. And I will still keep looking for the positive - there are always things that are positive in situations such as these. Might have to look harder - but we will find them!!

We are so LUCKY

2010-03-17T15:45:00.009-06:00

(issues with camera and computer - not a recent photo - but a cute one nonetheless)

We are so Lucky to have this little Guy in our life!!

We Love every bit of him

his Tiny toes

his Little feet

his Stubby fingers

his Small hands

his Huge personality

his Love of life

his Humongous smile

he is our Pot of Gold

Happy St. Patrick's Day!
We hope you are wearing green so you don't get pinched.

We are also lucky this week because we won a huge battle with our insurance. Remember that helmet Carter had to wear last year because his head was misshapen? The helmet our insurance wouldn't cover because it was not "medically necessary" it was "cosmetic." The helmet that cost more than just a little - yeah A LOT? We have been in the process for the last year appealing their decision and asking them to reconsider covering the helmet because of the circumstances that caused his head to go flat on one side - specifically the fact that the first two months of his life were spent in a hospital bed.

Friday we cried tears of joy when we opened a letter from our insurance company that said,

"We are pleased to inform you that following their review, the Panel determined that the original denial can be overturned. The rationale for this decision is as follows:

Specifically, based on review of the medical documentation received, and the multiple congenital conditions that complicated this case, the Panel determined that services for the Dynamic Orthotic Crainoplasty treatement are warranted for reimbursement. Consequently the charges will be reprocessed."

We are so Lucky!

More updates later - we have had a lot going on - a sleep doctor visit, some new decisions, an ER trip, a battle with croup, and sick kids for the last 11 days (but who is counting). It has been a fun couple of weeks around here!

Ginger can be his nickname for the week

2010-02-19T17:28:00.003-07:00

What happens when:

You are cooking dinner.......

You need a spice out of the cupboard......

The phone rings.......

Caller ID says Primary Children's so you know you need to answer it......

The ginger spice falls out of the cupboard and to the floor......

You walk into the other room to talk to the doctor in peace and quiet.......

And you leave Carter unattended for 3 minutes?????

Just enough time for Carter to bang the spice container on the floor and break the lid - therefore all contents of the ginger spice proceed to be dumped on the floor. Then to make matters worse - he crawled back and forth through the Ginger and made a huge mess on his levi's......yep that's what happens.

But we love him anyway and he does smell good so we will call him Ginger. Life is never dull.

And the swallow study went perfectly - no problems - which is what the phone call was that caused this whole mess in the first place..........

Happy Valentine's Day

2010-02-14T21:16:00.003-07:00

Carter wanted to wish a few of his favorite friends and readers Happy Valentines' Day! Hope your day was filled with lots of love (and cookies and chocolate).

We made cookies and delivered them tonight and that was fun! After this week of reflection on life and death, we took time today to find joy in our journey. None of us knows how long we have - so seize the day and make every moment count! Today especially we wanted our family to know how much we love them!

The OFFICIAL MRI results

2010-02-11T21:32:00.004-07:00

We have gotten word from Dr. Muntz regarding the official MRI results and we are pleased. Finally, some better news - we will take any we can get!

*His adenoids have grown back - this can happen - not all the time but sometimes and Carter is one of the lucky ones. So when we do the next surgery, we will have to do another adenoidectomy.

*The biggest issue obstructing his breathing is his soft palate - not his tongue. What this means is they will do a

Uvulopalatopharyngoplasty

(yeah - I had to google that one because I couldn't even pronounce it let alone spell it). Basically they will remove the uvula and rebuild the soft palate so that it opens up his airway. This surgery is not as evasive as the tongue reduction surgery or rebuilding the airway with ear cartilage - which makes us happy. He said recovery on this is about the same as a tonsillectomy because they are working the same area.

*The cyst has not come back - his airway seems to be clear under his voice box.

*I mentioned my concern about his problem with taking his bottles lately - where he gasps and tries to swallow and then sounds like he is drowning. It has just started happening recently and that is why we were thinking something had changed in his airway. Dr. Muntz is equally concerned about this and wants us to have another swallow study done to see what is going on - so that if something needs attention and needs to be fixed we know about it before the next surgery.

*His tongue appears large - but not abnormally large.

*Something else that was unusual is that he constricts his airway when he breathes in (which is normal) but he also constricts his airway when he is breathing out (very unusual). Dr. Muntz hasn't seen this a lot - it is unusual - but once again proves that Carter does not like to do things typically - he likes to be unique - and unique he is.

*We are going to schedule the swallow study and meet with the sleep medicine doctor and after that we will have all the answers and will proceed with that really long word.........

To sweet Christi

2010-02-10T11:33:00.006-07:00

Our hearts are broken as our sweet sister-in-law, aunt and friend lost her battle to breast cancer Sunday night. Christi fought with all her might to overcome this horrible disease - but it didn't happen. We will be forever changed by knowing and loving her. She was an amazing wife and mother - she was always positive and happy and we enjoyed being around her. I think she fit as much life as she could into her 32 years - she lived life to the absolute fullest.

We will forever miss the cards that came to our house with pictures in them (sometimes really old pictures that would make us laugh). She never forgot a birthday and never missed a chance to say thank you. It will be hard to not have those cards show up in the mail anymore. We will always treasure the ones we received.

We love you lots Kevin, Hunter, Brady and Owen - our most heartfelt thoughts and prayers are with you at this incredibly difficult time. May you always, always remember the memories you shared with Christi. She will live on in all of our hearts.

The last line of her obituary sums it up:

Someone, please, find a cure for cancer.

CHRISTI ANDERSON

Christi Rebecca Earlewine Anderson 1977 ~ 2010 There are no words to describe our tremendous sorrow in the passing of our beautiful Christi Rebecca Earlewine Anderson on Sunday, February 7, 2010 after a long and courageous battle with breast cancer. Christi was born in Boise, Idaho to Michele and Michael Earlewine on July 25, 1977 and spent the next 32 years bringing indescribable joy and happiness to all those who had the privilege of knowing her. She found it impossible to contain her zest for life, music, cooking (with a lot of garlic), planning parties, sending thank-you notes, watching football, making cards with crazy "outtake" type pictures inside, buying gifts and being an exceptional wife to her husband, Kevin, and absolutely amazing mother to their three boys, Hunter, Brady and Owen. Her family would like to thank the Huntsman Cancer Institute, especially Dr. Theresa Werner and her staff of caring professionals who spent so much time and energy on Christi's behalf. We will never be able to live up to the graceful determination that Christi displayed to us every day of her battle, even in the face of insurmountable obstacles. We are so grateful that she was able to leave this earth wrapped in the loving arms of her family. She is survived by her husband and sons, her siblings: Sarah Earlewine Dufour (Fabrice and Gavin), Michael Earlewine II and Chelsea Earlewine; also many aunts, uncles, cousins, nieces, nephews, two grandmothers, her parents and many, many friends who were touched by her life. Someone, please, find a cure for cancer.

We're done with the MRI

2010-02-05T16:11:00.006-07:00

It was an eventful day. Thank you so much for the prayers and support - we felt them. I was super nervous last night but today was calm. We started off our day bright and early by being at Primary's at 7:30 (we got bumped earlier - so lucky us got to get up early!). We did the whole rig a ma role of checking him into same day surgery, weighing him, measuring him and dressing him again in those cute pajamas. The nurses don't even really go over everything with us anymore - I guess they figure we know the drill - we have done this so many times.

A brief visit with the RN and we are on our way downstairs to medical imaging. The MRI technician came in, explained how things would work. We asked about his sternal wires (we didn't want him to get sucked up into the MRI machine - that would not have been good. A vision of Charlie and the Chocolate Factory just came to mind - hee!hee!) and they said we were good with those. The anesthesiologist then came in and told us what was going to happen. We were scared, he was scared. He told us that if at any point Carter could not handle the procedure they would immediately quit. We hoped he would cooperate and allow us a glimpse at what is happening when he is asleep. Words cannot explain how terrified I was when they were going over what could happen if he had a complete obstruction. But I was brave for my little man and told him he needed to cooperate so we will know how to help him best.

We waited a little longer and played with a fun noisy toy and blew bubbles (Carter loves bubbles). Before we knew it a MRI gurney rolled in and they were ready. We specifically asked them to look for the cyst they had drained during his surgery in September (the one blocking his airway). Alan and I both know something is getting worse - we can tell by the way he sleeps - by the way he eats - he is struggling for breath at times. We think there is a possibility the cyst could be back.

We laid him gently on the gurney while the anesthesiologist administered cherry limeade gas (it did smell very good - but it didn't put me to sleep). He fought the mask - he didn't like it (can you tell?) Not a few minutes later and Carter was asleep. They walked us out to the waiting room where we were told it would take anywhere from 1/2 hour to 45 minutes.

We waited........

and waited........

and waited more.........

at 10:20 I was starting to panic - it had been an hour.

We waited more..........

and more..........

and more.

I was starting to freak out - Alan calmly said if there was a problem we would have heard a Code Blue called.

Breathing.........

breathing........

breathing..........

aaaaahhhh - the tech comes out at 10:50.

He is done..........all is well.

Our little man is still asleep and he looks peaceful. The tech explained that they did have to rubberband a mask to his face to help him sustain himself during the sedation. It was pushed against his face and he would have marks. They also had to tape his jaw up because they were having a hard time keeping his airway open. They inserted nasal trumpets (they seriously look like trumpets) to keep his nasal passages opened. The anesthesiologist said he was hard..........it was scary. What we do know at this point - he is 100% obstructed when he sleeps. We asked if they saw a cyst - the anesthesiologist said he couldn't tell us what they saw. We asked if the doctor would come out - but we were told he needed to go over the results with a colleague just to make sure he saw everything correctly. We were a little disappointed - but the anesthesiologist was so nice - wanted to give us information. As he was leaving, he came right up to us and said, I will just give you a preliminary finding - they will go into much more detail when the results come out - but he guesses with all the problems he had that it is his tongue that is causing the obstruction. It is too big for his airway, too floppy when he sleeps that it is obstructing the airway completely.

I guess I need to read up more on this because the nurse asked me if I was ever scared to take care of him at home. "No, but the way you are asking me that makes me think that I should be scared to take care of him at home." Another question, "Does he wear an oximeter at night?" "Yes" I answer. "That's good," she says.

Carter woke up and immediately removed the remaining nasal trumpet - he saw no reason to have that in his nose. He also tried to pull the oximeter probe off his thumb and then removed his own IV on his foot. You could definitely tell he did not want to be there any longer. We didn't even have to wait for Carter to drink a bottle - they said he could go. We briefly met up with Lacey and Ray (Jaxson's mom and dad) so I could give her back a blanket I had finished. Please continue to pray for that cute Jaxson - that he gets to go home soon! Then we were on our way home.

So now we wait more......for the official results. We have made our appointment with the sleep medicine doctor for the beginning of March. Until then we will try our hardest to keep oxygen on the little man at night - even though he hates it. Again, thank you for your love, support and prayers.

Yoga anyone?

2010-02-02T20:02:00.004-07:00

Carter has started a new thing. We keep finding him in this position - we think he is doing yoga! According to google he is doing the downward facing dog pose. If any of you would like to join a class with Carter as instructor, feel free to drop by. But be warned, he has amazing flexibility so as he gets more advanced you may have a hard time keeping up.

Friday's MRI is creeping closer and I am getting more and more nervous. I know he will be OK, but I worry that the doctor won't be able to see what he needs to see in that one minute and thirty four seconds. Please send prayers and good vibes our direction - that we can get some answers so we can make decisions regarding the next surgery.

And as long as you are sending prayers and good vibes, our good friend Jaxson is in need of some prayers himself. He is battling a nasty sickness and is currently hanging out in PICU. Please keep him and his family in your prayers as he battles this latest challenge. He is the sweetest little boy ever and we love him and his family - we hope he gets better soon and gets to return home where he can hang out with his really cool big brothers!

We are taking a step back and re-evaluating

2010-01-21T22:54:00.003-07:00

Today was Carter's appointment with Dr. Muntz, the Ear, Nose Throat doctor. This was the appointment we were waiting for - one where we would get answers to the many questions we have regarding the severe obstructive sleep apnea. The appointment went well and we are much more informed and have decided upon a course of action for Carter. A course that feels comfortable for us as parents and for the doctor.

Carter has what Dr. Muntz calls multiple level airway obstructions. He went through Carter's anatomy and why we are dealing with this. Because Carter has a flat skull in the back of his head (typical in children with down syndrome) his palate is actually pushed forward because there is not as much room for everything. Children with down syndrome also typically have very large tongues - this is also an issue. Also because of the flat skull, it means there is less room in his airway and we already know that his airway is very tiny underneath his voice box. All this things add up to cause the multiple level airway obstructions.

After much discussion and questions about removing part of his ear cartilage and making his airway bigger below his voice box we decided the best bet would be to do a Cine MRI. This is a special MRI that Dr. Muntz said he had to beg Primary's to do for a year because it is so scary. Not scary as in scary MRI's - but scary in the fact that you sedate a child who stops breathing regularly and make them mimic being asleep and do not provide any sort of oxygen, breathing tube or any other breathing assists. (Carter's sedated echo which was scheduled for the 12th was canceled because of the sleep study results - from here on out Carter cannot be sedated for anything. If he needs a procedure done - he must go under general anesthesia - which is why a sedated MRI is scary. There will be multiple people on hand to offer assistance should anything go wrong.) Then for one minute and thirty four seconds they watch and see if they can see what happens when Carter is asleep - they record this so they can view all the aspects. The MRI should show his brain, his airway anatomy and then what happens when he goes to sleep. They will watch to see if it is his tongue that is the issue, the airway below the voice box or the palate. Based on the findings they will then know the best surgery for Carter. Of course the down side is if they can't see anything in this MRI we will be back to making a decision just based on what we THINK it could be. We have scheduled this test for the 5th of February.

After the MRI, we are to have an appointment with the sleep medicine doctors. They will view his sleep study and offer us any information they feel would help us make a decision on which surgery to pursue at this time. They may suggest that CPAP is the best way to go - but we already have a really hard time keeping oxygen in so we know that CPAP will be way worse. Dr. Muntz just wants to find the surgery that will make the most difference for Carter. We know that from here on out any surgery to correct this is going to be a major surgery.

One of the questions we asked is whether we can wait and see if as he gets bigger his airway improves. While the doctor said he guesses we could wait, he said the real question is whether Carter's heart and lungs can wait until he gets bigger. Scary thought. So I guess we now move forward and do whatever it takes to get this better. We are happy the day is over, that we now have more information and a plan. We'll keep updating as we get the results from all these things!

On a really cute note, we got to the ENT waiting room and I sat across from a boy who also had down syndrome. His mom looked up at Carter and mentioned how cute he was and asked what his name was. Then she leaned over to her boy (who turns 14 on March 29) and said, "Look at that cute little boy over there - his name is Carter. And guess what? I think he has down syndrome just like you." I said, "He does." Immediately the boy gets up and walks over to me and pulls up his shirt to his neck to show me his battle wound heart scars. I said, "You know what? Carter has that same scar." So of course he wanted to see Carter's scar. After a brief comparing of scars he got called back to the office - but it was so cute. I just love meeting all these kids and hearing their stories.

Well it has been a long day and it is late - good night everyone!

Two hands are better than one?????

2010-01-16T13:26:00.005-07:00

I have been thinking a lot about two phrases lately -

Two hands are better than one

Many hands make light work

and try as I may I cannot figure out how these two phrases fit into my life. I have two hands and they are quite useful. I use them for all sorts of things but mostly for doing things around the house - you know all the fun things that you do and no matter how much you do you never get done - the laundry, the cleaning, the vacuuming, the dishes etc. and on and on.

I also have a little boy with two adorable very little hands. And if two hands are better than one then four hands must be way better then two right?

See these cute little hands? Now who would think they could get into so much trouble? And don't let this smile fool you either......

Because if I leave the room for just a second disaster happens......

All these newspapers just stacked on the table ready to go out to the recycling bin - now all over the floor. Carter has a paper fettish - he loves it. He loves to throw it, crinkle it, rip it, and scatter it all over the room. I let him play for a minute and then clean up the paper mess - while I am outside throwing away the paper his two hands are still busy and when I come back into the house I am greeted with this....

The speaker on the floor - the Wii mat dumped off and my papers I was in the middle of filing back on the ground. Seriously. So tell me - how is it that four hands can be better than two? And how can many hands make light work? Because I for one seem to be doing much more work by having an extra set of hands. The way I figure it his hands are negative four hands and I have positive two hands - so no matter how hard I try I will never be able to catch up.

If anyone reading this is bored and would like to have "two little hands" come and visit let me know. Then I might be able to catch up on the mess he leaves behind. I must give you fair warning though - put all paper up high and you may want to lock up your garbage cans - especially if they contain something in the paper variety.

While typing this blog - this is what he has done! See what I mean???

And just as a side note on where we are with the latest bit of news on another surgery - we have an appointment on Thursday with the Ear Nose Throat doctor to go over the specifics of the surgery and what it would entail. Both Alan and I will be attending that appointment so we can ask a lot of questions and make the best decision for Carter at this time. We have talked to a couple of other ENT's and they say that while they may not jump this quickly into this kind of surgery with a "normal" child - they probably would with a child with down syndrome because their voice boxes and airways are smaller. We will keep you updated on what we find out and what decision we make. Thanks for all your love and support!

We're back (we think)

2010-01-05T22:15:00.013-07:00

My how time flies - since my last post we have celebrated Thanksgiving, Christmas and New Years. I'm not much into making New Year's Resolutions but this year I would like to be better at posting and reading and leaving comments of fellow blog friends. Already I am behind - so I guess we will see how this goes.

We have been busy, busy, busy trying to keep our heads above water with all the activities we are involved in. Every time I think we might have some spare time - something else creeps up behind us and thwarts our time again.

Here is a brief synopsis in pictures of what we have been doing.....

A trip to the emergency room on November 21st. (Sorry no pictures - although we were in a brand new room in the ER and they are very, very nice and much larger than the previous rooms). Anyway, Carter spiked a really high temperature, then his sats dropped and his heart rate really went high (in the 200's). We called the doctor and he said - don't take any chances - head to the ER - so we did. After several hours they did the viral panel (tests for 11 different viruses) a chest xray, and sent us home on Tamiflu just in case it was the swine flu. But the next day we got the results and everything was negative and he was back to his chipper self. We really don't know what he was doing. Ironically on November 21st last year we were also in the ER with a bout of croup. Maybe he just wanted to celebrate his anniversary by having us up there again?????????

Thanksgiving

We had lots of fun for Thanksgiving, lots of good food, lots of memories!

We of course had to go and visit Festival of Trees. Usually I volunteer on a committee and participate that way - but with everything that has been going on I chose to volunteer this year by just attending. Seemed good to me. We walked around all the trees and the only tree that made me cry was Gracie's tree. Probably because of knowing her story and how much we loved and prayed for her. What struck me as sad though was wandering around and actually recognizing people who had trees dedicated to them - kind of mixed emotions there - sad to know how many children out there who are suffering through various things but also joy in knowing that we have become a part of a very large circle of friends.......

This is Carter's funny face as we were sitting at the table eating our scones and cinnamon rolls - if you don't go to look at the trees you should at least go and eat their scones and cinnamon rolls - yummy!!
We got a call on December 14 about a cancellation that they had for a sleep study so we jumped at the chance and went up and did another round of sleeping. Wasn't any better the second time around - still as many wires and goop, still not much sleep. But Carter really doesn't seem to mind.
More at the end of the post regarding these results!

We went to visit Santa Claus at the mall. We actually for the first time made it to the mall before December 24th so it was nice to not have to stand in a really huge long line! Carter actually liked Santa from Parker's lap - he tried to pull his beard several times.

We took a trip up to Primary Children's Medical Center on December 23rd to donate books to the hospital. Between all of my family and Alan's brother's family we were able to donate 150 books to the hospital. Thank you to all who helped us with this - we hope the kids at the hospital enjoy the books. We know first hand what it is like to be stuck in the hospital for long periods of time - sometimes a book is all you need to pass the time and feel like you are somewhere else for a brief moment. We enjoyed taking the kids up to the hospital to have them give the books (even if they only got to go in as far as the lobby!!)

Christmas Eve our kids all opened one present - and our tradition is that it is always pajamas! This year even Mom and Dad got new pajamas so that was fun. This is a picture of the kids sporting their new pajamas waiting anxiously at the top step while we get the Christmas Tree lights turned on for Christmas morning.

The Christmas tree all lit up (minus the one/half strand that is not working and will be shipped back after January 20th - long story)

Parker and his new toy - an air soft gun!

Ashleigh and her new toy - a littlest pet shop adoption center!

Carter opening a present

Santa thought Carter needed a new set of wheels so here he is:

He loves his car!

It was a really fun day - spent mostly in pajamas and having lots of fun. We finally got a fourth Wii remote and the new game Super Mario Bros. so all four of us had fun with that all day! Can't believe it is already over........

On New Years Eve we went to my family's house and celebrated - well some of us celebrated. This is the party

This is the party pooper

This is what time it was (he had already been asleep for 1/2 an hour when I took the picture)

Parker, Ashleigh and Carter all stayed up past Alan on this particular New Years Eve!

Some huge milestones that Carter has recently accomplished:

Standing up to furniture
Cruising along furniture
Crawling on hands and knees
Working on his 11th tooth
Picking things up and putting them in his mouth (specifically food - but sometimes on occasssion Nerf Dart's). This one is huge - we have been working on this one forever - those fine motor skills are hard!!
Signing "more" for the very first time yesterday!

SLEEP STUDY RESULTS:

And now for the not so good news regarding the results of the sleep study. If you are still here reading congratulations! We got a call yesterday from the ENT who indicated that the sleep study results were done. The news is horrible - and not what we were expecting at all. We had noticed an improvement in his sleeping/snoring/sats and really thought this was going to be it - but alas it is not. He actually went from 10 episodes an hour to 30 episodes an hour. Why the difference you might ask - because the first sleep study he was on oxygen and they couldn't even take him off without him dropping too low. The second sleep study was done without oxygen - so without the oxygen keeping his sats higher we find that his sleep apnea is still very severe. There is no hope at all right now to get him off oxygen. We have a sedated echo scheduled for next week to see what the pressures are in his lungs - that is the other major factor in getting him off oxygen. However, our ENT said that if they pull the results of the sleep study they will most likely cancel the echo on us because no one is going to put a kid under sedation without a breathing tube when he pulls 30 stop breathing episodes an hour. We are devastated, heartbroken and at a loss for why Carter still is having some major issues.

The next step is a surgery to increase his voice box. This is much more severe and more invasive. Alan is really against it and is pushing for us to get a second opinion. This surgery involves taking cartilage from his ear and adding it to his voice box to make the airway bigger. With the results from the sleep study there is indication that the airway is much smaller below the voice box where they found that cyst. We have a lot of questions, we are going to schedule an appointment for the ENT so both of us can hear what the options are and what this surgery involves. It does mean a several day PICU stay - a breathing tube would remain in place for at least two days while he was heavily sedated and given medicine to paralyze him. The recovery for this is much harder and we just aren't sure at this point what we want to do. Without doing the surgery though - there is not even any chance of him coming off oxygen - so that is something we are weighing as well. It just seems crappy - it is crappy. We don't want another surgery - but we want him to be better - and we want him to be without oxygen. So for the time we have a lot of questions, a lot of decisions a brand new year! (Kind of stinks when medical deductibles and out of pocket expenses start again at zero - we hate this time of year!)

Anyway - that is what we have been up to. And to all of you who sent Christmas cards - we loved every one of them!! All of you have such special families and we are proud to call you friends!!

I feel like I have won the lottery

2009-11-17T15:26:00.005-07:00

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.....

2009-11-08T22:16:00.008-07:00

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!