Funny, Funny Boy!

John spent the day with Grandma today! They had a good time as always. Grandma kept rolling his baseball over him and he would just crack up. He's such a happy little boy.

My Funny Man!

On another note, he is still vomiting so we took him off the Bethanechol because it obviously wasn't working. We go see the GI Dr. on the 13th so we'll see what he has to say. Our next step will probably be an emptying study.

I am also going to make an appointment with his surgeon to replace his button. His current button (BARD) doesn't lock.........and there are many nights when we find him soaked because his tube came out....and it of course continues to pump milk all over him. The surgeon will change the button right there in his office. It's not going to be very comfortable.....he'll just yank it out. I am sure I'll cry more than John.

A Day With Dad

Today was a little different.......Mommy had to go to work and Daddy was off.......that doesn't happen very often. Jamie and John had a wonderful day together. John even took a 2 hour nap for Daddy.....now that doesn't happen often either! Jamie is a GREAT Mr. Mom (and is officially hired!!!!!) When I came home from work the house was picked up and ALL of the laundry was done. He even went grocery shopping this evening.

Not much to report on the lil man.........other than he gets cuter by the second!

Daaaaaddddd what are you doing to me?

I think I am going to love my jumperoo.........we hope! This kid has every swing, bouncy seat, and exersaucer there is and he doesn't like any of them:(

Now I just need to learn how to jump!

Wow....that is one handsome boy!

The Refrigerator!

We have a lineman in the house! John weighed in today at a whopping.....20 pounds 10 ounces! Holy *$@# is right! I still can't get over it.

We're making a list...

...and we're checking things off! As you all may know, John's outcome at birth was not very promising. However, Jamie and I knew that John was put here for a special reason and we insisted that the doctors do everything in their power to save our little boy. John's predicted future (per the neurosurgeon & the statistics of children with brain bleeds as severe as his) looked something like this:

• 70-90% chance of having cerebral palsy.........no signs yet...check!
• He will never recognize us.........definitely wrong on this one...check!
• He could be mentally retarded.....well, we all know that this isn't true...check!
• He will never be able to eat.....well, as of last Friday, his ST discovered that he CAN swallow. She put his food in a syringe and squirted it in the side of his cheek and he swallowed it!!!!!! She said that his tongue is tight at the base and he has a severe gag reflux but he CAN swallow and that's all that matters! We can work through the rest...check!
• He will never sit....we're still working on it but I am certain I'll be able to check this one off soon.
• He will never crawl......can't check this one off yet but it's just a matter of time before he gets the hang of it.
• He will never walk.....I KNOW I'll check this one off someday too!
  

I have to mention though that John's outcome is not typical for a child with a Grade III bi-lateral and cerebellum bleed which left his cerebellum a third of the size it should be. However, there has to be children that fall into that very small "positive" percentage.

As a fellow preemie mom (Billie) told me, "Those physical milestones really mean so little in the grand scheme of things. John is so cute and smiley and interactive. That is all so much more rewarding and important. His smiles will help get you through anything!" Isn't that the truth!

All parents have hope and dreams for their children but sometimes those hopes and dreams have to be altered a bit. Anyhow, it doesn't make those new hopes and dream any less important.

Mr. F.L.

A.K.A Mr. Floor Licker! I knew I had to introduce him to germs sooner or later:)

This kid cracks me up!!!

And, on another note......John officially has 5 teeth! Number 6 is on the way.

Happy Monday!

Somehow I don't even mind Mondays anymore.....everyday is GREAT now that we have John (and now that I job share and only teach part time!)

Typical Arizona Snowstorm...Heehee!

It really has been chilly here in AZ..........chilly to us that is! If you enlarge the picture you can see itty bitty snow flakes:) Today was John's first snow day!

It's snowing in Grandma & Grandpa's backyard (Cave Creek.)

On Friday, I packed John (and myself) up and we headed off to Grandma and Grandpa's house for a sleepover. Jamie was knee deep in house projects (imagine that) so we decided that we'd go stay at my parents. John and I slept in the guest room.....me in the bed and him in the pack-n-play. He slept great..........only because sometime during the night his feeding tube came out. When I woke up and checked on him, he was DRENCHED....and still sleeping! I have know idea how he slept through that. The poor little guy must have been freezing.

We love sleepovers at Grandma and Grandpa's.....Grandma made Mommy breakfast and Grandpa made a Starbucks run for her. I think I heard Mommy say we are going to have sleepovers more often:)

We had planed to take John to my friends twins (did you get that one) 1st birthday party. It was supposed to be at the railroad park so we'd be outside......away from germs. Anyhow, it was still raining so she had to relocated to her brother's house. We obviously didn't take John:( Jamie stayed home with him and I went to the party. After the party I went to Babies-R-Us and finally got John his big boy car seat. I can't wait to put him in it. We are probably going to put it rear facing......however, I really want him to face forward.

Update: We thought it was pretty neat that it snowed at my parents house in Cave Creek.....they live about 15 miles north of us. But, it just snowed at our house (Scottsdale) too!!! We are having some strange weather here!

Random thoughts

What's new with the bubster:

• He FINALLY said Dada this morning. Now it's mama, bob bob, and dada!
• He's doing the bunny hop......he hops when he's trying to crawl.
• He loves the (cold) tile floor. His new thing is to roll off of the area rug onto the tile and then proceed to lick the tile! Funny boy!
• He has 4 teeth and it looks like 4 MORE are on the way....poor guy!
• He weighs more than Arnold (our cat) and is close to weighing as much as Nellie (our other cat) AKA Wally the Walrus.
• I put him to bed last night.....AWAKE and he only cried for 6 minutes and then fell asleep .......we'll see how tonight goes. I am trying to break the habit of rocking him to sleep every night.
• We just started him on a new med. (this one doesn't have the neurological side effects as the last one we tried) to help empty his stomach quicker.........hopefully this will help reduce his vomiting.

I never knew I could love someone/something SO much until I had John. He is our life and we are so proud of him!

I thought this picture was so cute until.....

I took this one! Notice the puddle? I guess that's what happens when "it" hits cold air!

6:26Pm Update: Well, the whole putting him to bed awake didn't work out too well tonight. However, I did let me cry it out from 6:03-6:15 and to me, that's a long time. Anyhow, I kept checking on him on the video monitor and he was chomping away at his fingers........he possibly could have taken one off if I hadn't gone in:) My intent was to quietly go in and give him some Motrin (via G-tube) and sneak out. Yea right! I really tried to walk out but with the tear running down his cheek and his puckered up lips.......I HAD TO PICK HIM UP!!!!! I know, I caved but in all honestly, it was worth the 2 minutes of cuddle time before he fell fast asleep. We'll try again tomorrow!

Brrrrrrrrrr!

Who says Arizona doesn't get cold? Believe it or not, when we woke up this morning it was 28 degrees.........AND, our heat wasn't working! Jamie got called into work so here I am bundling John up and trying to figure out what's going on with the heater. Yeah right, like I know anything about heaters! Anyhow, I turned it off and back on a few times and about an hour later.......it worked!!!!!! Thankfully my wonderful husband (and Jim) built me an indoor fireplace (that I had been begging for) a few winters ago. So, John and I played by the fire all morning!

Brrrrrrr Mom, I'm cold!

Hooray for heat!

And, thank goodness for my warm fireplace.......we would never survive outside of AZ!

Update: The news just reported that today was the coldest it's been in 16 years and tonight is going to be even colder! ALL of our plants died last night. We didn't even think to cover them. Brrrrrrrrr, I need to go sit by the fireplace!

2006: What a year!

January

February

March
April

May
June
July
August
September
October
November
December

Thanks Kim for the great idea!

California Team!

One of my VERY best friends, Katie, lives in California and with a 1 year old and a newborn she obviously can't make it out to AZ for the walk. However, she created her own team, Team John Craig Birtch and will walk in honor of our lil man in Newport Beach. So, if you live in California and would like to join her team go to her webpage: http://www.walkamerica.org/373930 Their walk will be held on April 29, 2007 at Fashion Island in Newport Beach.

Happy Thursday!

Just another fun day in the Birtch home. This was actually taken on Monday and the weather outside was incredible! I guess that's why we live in Arizona. You can't beat our winters. My mom had taken him outside and every time she stepped in the leaves he would crack up. Don't you wish you could laugh so hard at simple things?

Walk to save lives!

The annual WalkAmerica March of Dimes fundraiser is right around the corner (April 21, 2007).........it'll be Spring before we know it!

As you all know, John was born at 24 weeks into my pregnancy. An average pregnancy is 40 weeks. His birth weight was 1 pound 8 ounces (680 grams.) He had an extremely rough start but we are very optimistic about his future.

We've vowed to make WalkAmerica a family tradition and we invite all of our wonderful family and friends (and friends of friends) to join us....we need walkers and donations! We're hoping for a really large team complete with matching t-shirts....of course!

Visit our WalkAmerica webpage titled, Team John http://www.walkamerica.org/373405 and sponsor us in the walk that saves babies!

Kids are welcome to join too as John will FINALLY be out of house arrest!


Cool shades!


To really put things into perspective, look at the nurses finger on John's knee......her finger tip is the size of his kneecap.


This picture was taken on December 7, 2005 minutes after emergency surgery for NEC. This is also the same day that John's brain began to bleed. Absolutely the worst day of my entire life......we almost lost him.

Chunky Monkey

Are you ready for this weight update?????? Our little Chunky Monkey is now 19 pounds 14 ounces!

And, more awesome news.....Kris, John's Physical Therapist, said she has no doubt in her mind that John will be able to walk!

WE are the lucky ones

I know at times our life seems difficult. In the past I've asked, "Why me?" and "When are we going to get a break?" Well, you know what? We've been given a HUGE break. We have been given the life of our precious little boy and I can not even begin to imagine life without him in it nor would I want him any other way. Unfortunately, some families aren't so lucky and as I sit here typing tonight, my eyes filled with tears, I asked that you say an extra prayer for this family http://jakae.blogspot.com
They had 24 week triplets a little over 5 months ago. They have already lost both of the boys and sadly yesterday their precious little girl passed too.

Where's John?

I had a lot of trouble sleeping last night which is VERY rare for me. I think I finally fell asleep sometime after midnight only to be woken up at 4:30am by John pretending to throw up.......I think he just wanted to get me out of bed because the coughing stopped the minute I walked into his room:) Little stinker! Anyhow, it took me awhile to fall back asleep again so, my WONDERFUL husband decided to go into work late so I could get a little more sleep. Have I ever mentioned how lucky I am? He DEFINITELY wins the best husband and father award!

So, Jamie gets John up at about 6:30am and puts him on the floor in the office to play while he gets on the computer. John was playing on the floor with all of his toys and rolling all around as usually. All of a sudden it got very quiet and Jamie didn't hear John anymore so he turned around to see this:



John cracks me up! He can always put a smile on your face!!!

First Sleep Over!

John did GREAT on his first sleep over and needless to say, we all had a wonderful New Year's Eve.......ours probably more exciting than my parents but it's all relative!

We packed John up.....one little boy, SO much stuff.... and took him to my parents house around 1:00pm.



Remember that backpack Santa brought John? Well, all it could hold was John's feeding supplies (new bags, extensions, syringes, spoons, bowls, medicine.) So we had to use Daddy's suitcase too!

Grams bought John a new toy to practice crawling on! It's the teacher in her.....always finding thing to help his development. Thanks mom!

As you can see, he LOVES it!

They brought in the New Year with a walk and some wild and crazy hats and horns. While we celebrated at the J.W. Marriott with GREAT friends!



All in all, some good times were had!

We are glad to see 2006 come to an end and have great hopes that 2007 will bring less tears and worries and more happy times!

Happy New Year!