Hello all! Hunter is finally home!

He is doing really well and is nice and cozy comfy in his bouncy seat with his favorite stuffed dog. This was such a long stay at the hospital that Den and I have virtually forgotten our routine when it comes to Hunter and his cares. We do have some Lung treatments to add to his schedule, he gets some inhaler meds and some nebulizer meds as well as some lung "pounding" therapy (similar to kids with cystic fibrosis). He actually really enjoys the pounding...puts him right to sleep. We also got rid of 3 meds off his list, so thats good as well.

I cant explain how Hunter does it,but he just keeps beating the odds...he definitely has his own agenda, and I am simply here to see that we and the medical professionals support it. I will never give up on my son, no matter what pressures are put on me or what the prognosis seems to be. I will also never put him through needless or futile pain. It is such a hard balance. If the pain will lead to a more quality life and more quality time with my son, then i feel that it is worth it. I will never prolong his death, only his life, and he certainly is full of that!

Thank you all so much for caring and loving Hunter and us. I have no idea how I would survive this bittersweet journey with out all of you. Here is wishing for a healthy couple of months without even uttering the word Primary Childrens! I am posting a picture of Hunter on his ride home from Primary...he really has the puppy eyes down...he is pleading for me to take him out of that darn carseat, he hates it.

Tues. 2 Oct. 2007

Hello friends,I wanted to give you an update on our little tooshie monster. As most of you are aware, I came down with a cold that Hunter subsequently caught. They admitted him to Primary just to provide oxygen and supportive care while he got better, but true to form things didn't go quite as planned.

He ended up having some de-sats and they rushed him to the PICU where they tried the bi-pap but then ended up ventilating him. The theory is (because honestly they arent quite sure) that with his cleft palate and aspiration issues it was much harder for him to deal with his increased secretions that came with the cold. So they believe the collapses they see in his lungs are due to these excess secretions, aspirations and the virus. Now that he is on the vent, his lungs are looking better and he is getting all of that goop out of his lungs and seems to be improving. In my opinion, if things continue to go well they may try to extubate him this week some time.

Hunter has been such a trooper during this and continues to watch his mobile and have staring contests with mom and dad. They are continuing to give him sedation because he gets really angry with the tube and fights it so much that the ventilation machine cant do its job! (man you should see the nurses panic when he turns his angry shade of red). so it can be scary, but i think once the tube is out he will feel much better.

On the mommy front, i feel scared for this winter, as I know I can't protect the little guy from everything...and this bug has hit him so hard. This episode made me realize just how fragile he is and to enjoy every minute with my little guy. So for all of you that come to visit dont feel offended if after you wash your hands, I bathe you in Hand sanitizer to boot! ;) ¬ÝI am going to do my best to keep him sheltered from all the little creepy crawlies this winter...wish me luck.
I am going to include a pic of Hunter with his vent. You will note that they have had to stitch the tube to his nose because it wouldnt stay in place (also a cleft palate issue apparently) I almost fainted when they told me about the stitch, but he seems to be ok with it and the tube isnt upsetting him as much since they have done it.

thanks everybody for your thoughts and prayers! i hope tonight finds you together with your loved ones, safe and healthy and sound.

Thursday, 13 Sept. 2007

We're planning Hunter's 5-month birthday party tomorrow. We are celebrating a birthday for him every month as he is ARE MIRCLE! It will be a humble party with cold stone ice cream cakes and refreshments.

Tues. 4 Sept. 2007

As I told ya'll, Hunter is in the PICU but is stable and doing ok. I just found out that he is in the 8lb club! (and almost 5 months old!) We are experiencing little miracles everyday with this cute guy and although we do experience setbacks, we are slowly crawling our way towards victory!
Hunter is meeting Inch-stones every day and we are so blessed to have him here with us. (we don't go by milestones as its looking just a little too far into the future and we want to cherish every second)

We Are so blessed to have "ARE MIRCLE". I wanted to share this picture with you, I feel it really shows Hunter's attitude towards the Dr's and their predictions (They said he wouldn't make it home from the NICU when he was born, and they said he wouldn't make it out of the operating room last month) Doctors Schmocktors!!

I just had to share these cute pictures with you! He is now a big boy at 6lbs and 3oz! These photo's were taken at Primary where we were exchanging the huge hindenburg feeding tube you see there, to a sleek, svelt, smoother model for his comfort.
I also had to show you what a snappy dresser his momma makes him :)

You Guys are Amazing

You guys are amazing friends and I don't know what I would do without you. You enrich my life. I want to share a story with you that I found, it is just how I feel about all the experiences I am goingthrough now. I think you will appreciate it. It is below.

..................................
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland haswindmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.