July 2006 Archives

Day +70 and +71- Wednesday, July 26, 2006 and Thursday July 27, 2006

I don't know how this happened but, Jack got admitted to his same room again.................very strange..................

We were doing alright with our experiment with the formula, when on Friday night Jack started having some stomach cramping, which was very uncomfortable for him. The weekend went on and seemed to become more frequent. We knew we had an appointment with the new gastroentestinal doctor for tuesday, so we were hoping that either the cramping would go away or the doctor would come up with a reason for it.

Tuesday morning Roy and I left home early to go for the GI appointment which went pretty well. It was decided that the only way we were really going to know what is going on with Jack's gut was for him to go in and take a look through endoscopy and colonoscopy. No one really was worried about his stomach cramping. After that appointment we went up to clinic for our regular transplant appointment and we found out that Jack lost 3 pounds which is really NOT good. So, what is causing all of this? The lack of formula or whatever is causing the cramping. We went home and Jack's gut symptoms didn't seem to get better. We had a rough night with a lot of stooling and cramping and Jack woke up wednesday morning just not feeling like getting out of bed, which is very unusual for him.

I called down to CHOP and spoke with Ginny one of the nurse practioners and we finally decided that we didn't want to leave Jack so uncomfortable and that it would be wise for me to have him admitted and then they could work on having his scopes done during an admittance rather then wait for the GI scheduling department call us with an appointment over the next couple of weeks. So, down I traveled to Philly and Jack got admitted yesterday afternoon. We found out on Tuesday that Matthew Brand was getting admitted for stomach cramping and he was going to get a scope, too. When we got to day hospital where they started some fluids, Matthew and his mom Cathie came down to sit with us and waiting with us til we were admitted into our room. It seems quite coincidental that both these boys have the same symptoms?...............

Jack is in his glory, his girl Tracey was his admitting nurse and she was in til 11:00pm and Jack woke up to his buddy Denny being his nurse today, Linda coming to see him as well as his other girl Sherise and his all time favorite play pal, Derrick. Jack still has the cramping but it sure doesn't seem to bother him as much with all his friends around.

So far today we still haven't been scheduled for his scopes which means they will either schedule it for tomorrow (friday) or schedule it for monday, and I will be so upset that they will make us stay here for the entire weekend. Please keep those fingers crossed that they get us in for the scope tomorrow and most of all pray that his symptoms are just that from a virus and that his gut really is starting to look good and that the transplant is helping it get better.

Thank you all again for continuing to keep us in your thoughts and prayers. God Bless

If you don't get "Parade" maazine which is usually in your Sunday newspaper, view it on this link. There is an article on rare diseases. The full article will be available on line Tuesday July 25.

http://www.parade.com/articles/editions/2006/edition_07-23-2006/Rare_Diseases

Roy's co-worker, John Castagna called this morning and said he really needed a haircut and said that I could probably use a weed-wacker to cut his hair. Since Jack knows I haven't done any haircutting in a while he took John literally.........

"The human race has one really effective weapon, and that is laughter."
Mark Twain (1835-1910)

Day +65 - Friday July 21, 2006

We got a phone call from Dr. Bunin yesterday afternoon at 3:45 with the news that Jack's engraphment results came back and he is 100% Donor!!! This kid is holding on to those donor cells. It's all those prayers, knocks and crosses you are all doing for us. Thank you so much and keep them coming.

On top of that good news, the little experiment we've been doing with eliminating Jack's night feeds and giving him an opportunity to eat on his own as well as keeping him hydrated, is working. So far so good and we are all on the same page with what we're doing, so we're going to keep it up with hopes that Jack will sustain his weight and get the nutrition and hydration he needs. Again, thanks to all of you who have been praying and supporting us.
Everyone enjoy your weekend. God Bless.

"More tears are shed over answered prayers than unanswered ones."
(Mother Teresa (1910-1997) Albanian-born missionary).

With the intense heat we've been having, it's been hard trying to keep Jack cool. Up until this past week, Jack wouldn't go in the pool other then sticking his feet in. This was a major accomplishment. Jack actually went all the way in the pool. The temperature for the pool was 90 degrees without a heater so you can imagine how hot it was outside.

Jack riding in his boat.

Daddy teaching Jack how to swim.

Christina giving Jack the treasure chest of jewels she found in the pool.

Roy is off the hook................He took Christina to the orthopedic doctor on Monday for her to get her hard cast and it turns out, her arm isn't broken. The doctor said after reviewing her x-rays that she spraned it pretty good and gave her a splint that can come off for swimming, bathing and at night. Thank God for that!!!! She still needs to take it easy, so no gymnastics for several weeks.

Yesterday we went to clinic and Jack is doing well. All his counts are up again and we are working on changing a couple of his meds. We've been having some vomiting issues and some really loose, frequent stools and Roy and I think it's the potassium he's been getting. We decided on our own to eliminate one of the potassium's to see if it makes a difference and it's helped a little but Dr. Bunin said lets give him a rest on his feeds, so tonight will be the first night we go without formula. We are however, going to give him some pedialyte just to make sure we keep up with his fluid intake so he doesn't dehydrate. This is a really big step, if Jack does well without the feeds and he starts eating better (swallowing some foods is an issue for Jack) then maybe, just maybe we may be able to stop the night feeds totally. Please pray that Jack does well without the feeds and that he can sustain his weight. Dr. Bunin also arranged an appointment for us to see a gastroenterologist next week to make sure we're on the right path as well as consider having Jack get an endoscopy, which he hasn't had in over a year and a half. By having a scope this will give us an idea of what his gut is doing and to see if he still has some of the ulcers he had some time ago as well as see if the transplant has made a difference in his gut. This is all what we have been waiting for, Jack getting an immune system that will help the threat of infections as well as helping to make his gut work better with a working immune system. As most of you know, his gut issues (Crohn's like symptoms) seem to have been a result of the NEMO, so we sit and pray for the transplant to have made a difference.

I haven't said it in a while, but I just want to Thank everyone again for continuing to keep us in your prayers. We're not out of the woods yet and could still use knocks, crosses and prayers. God Bless

We've had a busy week. After going to clinic on Wednesday I've been running around with Christina.

Tina started gymnastic's camp this past week and on the first day she hurt her back. She toughed it out on Tuesday and Wednesday, but by Wenesday night it was really bothering her. So, we took her to Dr. John's a very good friend of ours who is a chiropractor and he said she pulled a muscle in her back and sort of torked her upper spine a bit, enough to make her uncomfortable. He said keep her out of gymnastics for Thursday and Friday and send her back on Monday..................Well, gymnastaic's camp is now over for Tina...................Friday night she and her father decided to horse around (I guess her back was feeling better), and she decided she was going to hog tie his feet together with a jump rope, when Roy swept his feet behind her causing her to fall back and she braced her fall with her hands and ultimately broke her left arm again!!!!!! Not again - Christina, it hasn't even been a year since the last time you broke your arm. Roy obviously feels awful about it.

So, need-less-to-say, this weekend we are staying inside in the airconditioning because she can't go swimming until we go to the orthopedic's on Monday, the hospital put her in a soft cast. She is already having a hard time trying to decide what color cast she wants. She is actually thinking camouflage. Whatever makes her happy and of course we'll get a waterproof cast so she doesn't loose out on the pool for the rest of the summer. She thinks its pretty cool, too. I just don't want broken bones to be a habit.

Send her a email, she loves getting mail, however not great at writing back yet.
bubbagirl98@aol.com

I know it's been a while since we've blogged, but always remember "No News is Good News"!

Well, today, by the request of Dr. Bunin, Jack had clinic. Normally we go on Tuesdays, but Dr. Bunin asked if we could bring Jack in today instead of yesterday, she wanted to see him herself. Anyway.....we got some really great news. After getting blood work, Jack's counts have almost doubled from last week. His platelet level went from 40 to 85 (thousand, that is) and his ANC is now up in the 4,000 and his White Blood Count is now 5.2. All his counts are coming up. Dr. Bunin was very pleased to see the jump in his counts and of course, so are we. WOOHOO, YOU GO JACK!!!

We've been busy trying to get the house in order. Roy has been doing so much work repairing pipes for the pool, cutting down dead branches off trees, mowing the law and just trying to catch up on all the things that have been neglected during the time that Jack was in the hospital. We're about 2 months behind on doing things, so I never got a chance to plant flowers and the yard looks bare. That's ok, next year we'll have everything put together the way it should be, right now we're just trying to make things look decent. We're just so grateful that we're here with my mom and taking the load off of her.

On top of all the yard work, Jack's Pop-pop came here from upstate New York, on Sunday to spend the day with the kids. They had so much fun in the pool. Christina also had Charlene here for the day, so everyone had a blast.

On Monday, we had one of the families we met during transplant come here to spend the day and it was really nice. Tammy Lausten and her sons, Tyler, Dominic and Nicholas drove up 2 hours from Southern Jersey and we hung out and tried to get the boys to go swimming. I've mentioned Tyler before, he is one of the boy's who recieved a transplant the same time as Jack and he's doing very well. Please remember to keep him in your prayers and check out his website:
www.caringbridge.org/pa/tylerlausten/

A romance even seemed to happen that day. Tyler and Christina really hit it off. Roy and I are a little worried, they exchanged email addesses and have been IM-ing each other......(Tina has good taste!!)

Hey Ty, that's our little girl you have your arm around!!!.............................

(Roy's favorite line from the movie "Clueless" - "I have a shovel and a shotgun...no one will miss you"!!
NO OFFENSE TAMMY!!! You know we love Tyler!!!!!!

Cheryl even stopped by and she had fun with the boys as well. (from left to right - Dominic, Nicholas, Jack and Cheryl)

There are so many other pictures that both Tammy and I would love to post and wish we could (wink, wink).

Tammy and UH!,.........Thank you so much for coming to our house and we can't wait to do it again!!!

I got a phone call this morning from Jack's cousin Shannon complaining that his picture was not on the blog and he was here before the parade. Sorry Shan. This is the story.

Shannon is Jack's Godfather/Cousin and he moved down to Florida a year and half ago and Jack has only seen him once since then. Shannon was on a job with his dad that brought him up here to NJ and he came to the house at 1:30 in the morning and surprised Jack and Christina. Jack obviously woke up, but Christina was sound asleep. Jack was so happy to see him. So, here you go, Shan, you made it on the webpage!! Jack says Hello and he misses you, Savi and Snickerz, too!!!!!!