September 2006 Archives

Hello Everyone. This is just a quick update. We had clinic today and Jack's counts are starting to come back up again. Slowly, but that's good. The doctors are starting to reduce more of his steriods and they made some adjustments in his other meds. So, he's hanging in there. Roy, Christina and myself on the other hand are all sick. It is very difficult for us to keep our distance from Jack, but it's really incredible that he hasn't gotten this.....knock on wood!!!!!!!! Let's keep praying he stays healthy from this, whatever it is we have. We're all getting ready for Candi's wedding next week. (Tina and Jack's cousin, if you didn't know) and Jack is all excited about wearing a tuxedo, he tells everyone how good he looked at his fitting. God Bless Him. And of course, Christina looks so beautiful in the dress that crazy Mussy has to almost redesign to fit her. Thanks Muss.............

Well on that note, Please remember to keep us in your prayers as well as those who you don't know.
The Gutteirez family who is at the NIH getting another opinion on Simon,
The Brown family for Jacob going towards getting a transplant,
The Smith family whose 12 year old Conner was just diagnosed with NEMO,
Rhys in Wales, UK who just contacted us who has NEMO,
Danasia is still holding on,
Little Ronnie is still in the hospital,
Matthew Brand from transplant,
Tina's boyfriend Tyler from Transplant,
Alyssa from transplant,
My Aunt Lois who was just operated on and has lung cancer and
Anyone I failed to mention who just needs to be prayed for.
God Bless you all and keep knocking, praying and crossing!!!!!

(Please go to www.caringbridge.org/in/connersmith to read more about this amazing family)

Danaisia's dad wrote this in our guestbook and I wanted to post it for everyone to keep them in your prayers. Danaisia recieved her transplant the same time as Jack and has taken a turn for the worse over the last couple of weeks, Daniel writes:

hey wuz up!how is everything hanging with jack?danaisia haven't got any better nor worst.she is on a lot of meds.for example hal & lipids (iv nutrition,vecuronium,morphine,insulin,amlodipine,magnesiumgluconate,tacrolimus,
foscarcet,vitamins,lansoprazole,cotrimoxazole,voriconazole,amilkacin,prednisolone,
linezolid,imipnem & cilastatin,caspfungin,azithromycin,and lorazepam.the iv access she has now is (L)hand arterial line(for monitor blood pressure and draw blood,(L)thigh femoral line,(L)foot iv,(R)chest port(all for medications).nasogastric tube in(L)nose for feeds,foley catheter in bladder to measure unrine output,oscillator with nitrc oxide to help with breathing,endotracheal tube-breathing tube in mouth,and 2 chest tubes on(R)side.so i'm basicily taking it day by day.also, not to forget she getting catheter in neck very soon.hang in there jack! danaisia and dad

Please, Please, Please keep them in your thoughts and prayers.
God Bless.

Sorry it's been a while since we've updated, but it looks like the problems with the server have been fixed and we can start updating again.

Thank You Andres!!!!!
(Andres, by the way, expect a long email from me in the next few days, I got a lot of questions for you, Glad your back from Mexico!)

So, we're muddling through. Jack is doing well. His counts are recovering from the infection he had but his platelet level is up one week and down the next. Dr. Bunin doesn't seem too concerned, but we are keeping watch and making sure he doesn't bleed.

We're still dealing with a lot of diahrea, but what else is new......These medications are really ripping his gut up. For the first time in a long time we're actually feeding him through his g-tube and not his j-tube and he seems to be tolerating it, thank God. He's driving us crazy and can't wait to start home schooling again. He'd love to go to school, but unfortunately he can't attend until he's a year out from transplant.

I really can't think of anything else to write, so here are some pictures i'd like to share with you.

First day of School. Tina, Frankie, CJ and Jack waiting at the bus stop.

What? I have low platelets again!!!!!!

We have the most wonderful neighbors, not to mention the Chief of the Fire Department being one of them. So for Jack's birthday present, Chief Chris Barella arranged for Jack to get a ride in the Ladder Truck that he christened last year at the "wet down". Jack wanted Daddy to go with him for the ride.

Driving off in "Ladder" Truck #1

Firefighter Matt, Chief Chris, Firefighter Mike and Frankie, our neighbor.
Jack's "Co-Firefighters"!

So, after about an hour of Roy, Jack and Frankie being gone, they came back and told of what they got to do with Jack's fellow firefighters. Jack got to go up in the bucket on the ladder and they extended it 60 feet into the air. Daddy said Jack was in complete Awe. The firefighters showed Jack how they stablize the firetruck, showed him around the firehouse and then gave him a choice of what truck he wanted to come home in. Of course he picked the pumper truck, his other favorite ride.....

I have been told by several people that they have not been unable to post a comment or guestbook entries on this website. There is obviously a problem, I have even tried to comment on our other NEMO kids websites with the same server as us and have not been able to post. We would love to get your comments so please don't give up trying. Hopefully the problem will get fixed soon.

Otherwise, Jack is doing well. We had clinic on Tuesday and his counts are in the toilet since the infection he had last week, but they are showing signs of recovering. The doctors say it is not unusual for this to happen when these transplant kids are fighting infection. They don't get too concerned, but of course for peace of mind I asked them to rerun the engraphment studies and Jack is still 100% donor. WooHoo!!! Yipee!! and of course Thank God. We are going back to Philly tomorrow (Friday 9/8) to run some more bloodwork to check his platelets and give him some IVIG's. They were unable to IV access Jack on Tuesday, his veins are so beat up so they decided to give him a couple of days rest and hopefully his platelet level will come up so he won't need to get platelets. Please pray.

I know I ask this of all of you so often but please continue to pray, we aren't totally out of the woods yet. I am also asking you keep all the children who our in our circle of transplant kids in your prayers as well. Especially, Matthew, Ronnie and Danasia, who are in the hospital and need those extra prayers to get them through.

Today wasy Christina's first day of 3rd grade. She was pretty excited to get back to school but more excited that her best friend Charlene is in her class........I smell trouble!!!!! Ahh, they're good kids they won't be any trouble at all...................

Thank you all and don't forget to keep trying to post a comment or you can always emails us through this website. We love to hear from you. God Bless

A child is a beam of sunlight from the Infinite and Eternal, with possibilities of virtue and vice- but as yet unstained.
Lyman Abbott (1835-1922) American Congregationalist minister

We haven't put any pictures in quite a while. I got an email from my Aunt Robin saying we want pictures, pictures, pictures, so here they are. http://www.flickr.com/photos/cure4jack/
I will catch up on some old ones that have to be posted. It has been a very crazy summer, Jack in and out of the hospital, sometimes just kicking back and enjoying the time he has been home and sometimes just being to tired to do it. But sometimes good things take time.

Due to technical difficulties I was not able to blog yesterday, so Thanks to Andres Trevino for helping get to the bottom of the problem I am able to blog today for Jack's birthday that was yesterday September 4 (Labor Day!!). Thank you to Dr. Orange, Dr. Bunin, Dr. Brown, Dr. Aplence, Dr. Grupp(Grump), Dr. Teachy, all our nurses, the entire BMT staff and anyone I failed to mention, we were able to celebrate Jack's 4th Birthday! It has been a tough couple of months but we were able to be home.

Cherish your children and live life the best you can and just believe.............only YOU can make it happen. Thank you Christina and Jack.....We Love You Both

Roy and Christina came down to Philly last night and we figured we would be in the hospital all weekend. Christina and I stayed at the Ronald McDonald House and when we got to the hospital this morning to my surprise I was told that Jack was going home. Woo Hoo!!!!!
Turns out that the organism that was causing Jack's infection is sensitive to an oral antibiotic called Cipro and they figured why keep him on the IV anitibiotic if it will do exactly the same as the oral, so they let us go home.

So now we are home and trying to plan a little family gathering for Jack's birthday on Monday. He's already decided he want's to go out for dinner to Banzai, a Japanese Steak House that he likes so we have to find out a time that they are less crowded to be able to take him. We'll probably go for an early dinner and since it's Labor Day weekend, I'm sure they won't be so busy, but who knows, he may change his mind several times before monday,. He's very excited that we get to go to Shop Rite tomorrow to order his birthday cake and Roy and I still have to go shopping to buy him a birthday present.

Thank you all so much for your continued knocks, crosses and prayers. God Bless.

Home is a name, a word, it is a strong one; stronger than magician ever spoke, or spirit ever answered to, in the strongest conjuration.
Charles Dickens (1812-1870) British novelist.