Our Holiday Family Picture...

Holidays

Well, its been a long time since I have updated this blog. Medically I suppose I should catch everybody up on what has happened. Its a devastating blow, but one that Hunter has yet again defied. I found out that Hunter has what they call Mitral Valve Stenosis...It means the muscle ring around his valve is thickening and slowly cutting off the circulation so that the blood cannot flow from chamber to chamber. This is probably the single biggest reason for his monthly respiratory distress episodes, caused by edema and pulmonary hypertension (high blood pressure in the lungs). With all of Hunters other issues and his horrible track record for tolerating surgeries, we have decided against putting him through any surgeries on his heart. As a lot of you know, even on a perfectly healthy baby, heart surgeries are extremely risky. We learned of this latest news while Hunter was in the PICU on CPAP...in the beginning of Nov. They told me that with his blood gas being as bad as it was, he may only have a few hours to a few days...they told me they were worried he wouldnt survive the ride home....This was 4 weeks ago. This rollercoaster that Dennis and I have been on has been so stressful, we have gone through the "imminent" loss of our son so many times. I held him all the way home that night, I know I probably shouldnt have, but i couldnt bare having him pass in his car seat.

So...as you all can see...he is still here, and he is still as seemingly "healthy" as always. Just like his ornery little self. Through all of this stress and strife, i remain thankful. I have had so much more time with Hunter then they have ever given me hope for...Only Hunter and God know the plan for him, and I am blessed to be a part of his journey.

So much has happened since this news. Hunters 7 month birthday has come and gone...it is soon to be his 8th months. Thanksgiving has come and gone and I am so thankful he was here to spend it with us. The next goal is Christmas, I cannot tell you how much i hope he chooses to spend it with us. We have the tree up, which he LOVES. We have his stocking, and will soon have his first ornament.

Hunter has been slowly progressing in his grabbing and grasping. He is forever trying to undress me by grabbing my shirt, or he also likes pulling my hair. He is also focusing on faces a lot more, occasionally going cross eyed while doing it. I even think he tried to smile at me when i was acting extraordinarily silly one night...but then he just rolled his eyes instead. He is certainly a little character. I am going to post our Holiday pictures for you to enjoy...boy do i love that little dude's santa outfit!

Dad (dennis) had ankle surgery and has been out of work for a month, we are hoping he will be able to pass his physical and be back to work in January. Because of this he and Hunter have been able to spend a lot more time together...they are inseparable buds.

I want to take this last thought and Thank all of you from the bottom of my heart for your support and donations that you have given to Hunter's website and through his events. You have given us the most precious gift anyone has ever given, the freedom to enjoy our limited time with Hunter. Thank you so much, words cannot express how amazing you guys are and how humbled we are as a family that you have done so much for us. Thank You.

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!!