I am so sorry that we have not updated this in a while, a lot has been going on. Zachary’s EBV which detects cancer, jumped from 5,100 to 17,500, this is a very big jump. They did a full body CAT scan on him and found enlarged lymphnodes in his neck, which they are concerned with. He has his EBV drawn monthly along with his weekly labs, so they will still keep a close eye on that.

On Tuesday, May 23rd, he had another surgery called an endoscopy. In this procedure they go in with a scope to see what is going on in the esophagus and the stomach. The doctor said that the esophagus looked pretty bad, so we met with another surgeon today to talk about another surgery called a nissenfundalplacation. This is where they would go in and tie the stomach so no acid can come up to eat away at the esophagus.

Besides all of that – Zach is doing great. He is still not eating by mouth and has his G-feeds during the day and J- feeds at night. We hope after the nissen he starts eating more by mouth. His speech is coming along slowly, he can say mom, dad, no, yes, but everything else is babble. It is very frustrating trying to understand a two year old that is trying to tell you something. We have a speech theraphist who comes out weekly to help him with his speech and sign language.

The rest of the family is doing great, Kiley has only 5 more days left of school, so she is pretty excited about summer. Austin is almost 5 months old and is about 19 pounds!! Big happy boy. Wade is working 4-to midnight so he can make all of Zach’s Doctor appointments. I am doing pretty well, just trying to hold it all together for the family.

-Stacey-

New photos added

Zachary has had a chronic cough since October. He has been on many antibiotics but nothing seemed to be working. They sent us to a lung specialist which determined that he has been aspirating into his lungs, which was causing the chronic cough. Zachary had surgery on Feb. 7, to put his J-tube back in so that he would hopefully not aspirate anymore. Two weeks later he had a chest X-ray that showed his lungs are still damaged but look alot better. We meet with a lung specialist again in one month to talk about another possible surgery called a nissenfundoplication. Long word, but what it means is they will wrap the stomach around the esophagus. It’s a major surgery so we are trying hard to avoid it. We think Zachary may also be having problems hearing. He had a hearing test done last week and didn’t do so well on it.

On March 13th, Zachary had another surgery called a Bronchoscopy,Direct Laryngoscopy and a ABR hearing test,which he past on both ears! No hearing problems. The rest of the tests all came back fine so far. However, we will get the final results of the tests back next week.

News about the rest of family! Wade has a Birthday on March 16, Kiley is doing great in school. She also started Gymnastics, and is having lots of fun!! Austin is getting really BIG and Zach is having lots of fun with his brother. And me, I am tired as can be, but enjoying the precious time with my family.

One year ago today, December 1, 2005, Wade donated one of his kidneys to his son Zachary. I can’t imagine to many other things that could create a closer bond between a Father and Son.

The transplant was a success, and if you could see Zachary now, you would never believe the difference a year could make. Last year, at almost a year old, Zachary could barely sit-up by himself, let alone stand or walk. NOW, he is like the Energizer bunny he just goes and goes. He climbs on everything and rides on toys just like any other little boy who is about to turn two. It is so exciting to watch the changes in him. Especially from a Grandparents view – we don’t have to chase after him 24/7!

He is still getting his food and meds through the “G” tube inserted in his abdomen, Stacey tries new foods by mouth daily, some stay down for awhile and others (well, you remember that process – green beans on your glasses!) Kids have that honest way of letting you know when they are not crazy about something.

His creatin, white counts, etc. go up and down, but he is doing really well. To look at him, you wouldn’t know that anything was wrong with him. His EBV, Epstein Barr Virus, levels which are related to lymphoma cancer cells have been a little on the high side, but the doctor monitors these levels very closely. They have upped his Valcytes which helps fight the EBV. As we all know with Zach, his blood level and counts change weekly.

Since June, both Wade and Zachary have been doing really well and so up-dates have been slow – OK, none! It seemed silly to write when there had been few major medical changes. We do however appreciate your asking and concern about them though.

Big sister, Kiley, started all day kindergarten this year and is doing really well. Most days she likes it, however, she hasn’t acquired a taste for those school lunches yet (suprise, suprise!)

Next month they will be welcoming a Special Christmas gift in the form of a new sibling. If the ultra-sounds are correct, they plan to name him Austin. He was a suprise, but the University is really excited about the pregnancy. Arrangements have been made to store Austin’s cord blood for future medical use on Zachary.

Well, from us grandparents, we want to thank all of you for your thoughts, prayers, help with the benefit, donations, babysitting, etc. that you have done for Wade, Stacey, Kiley and Zachary in the last two years. It has really helped make their life easier.

Happy Holidays to All
Gma E

We are all home again. Zachary’s surgery went pretty well. He did not get in until 12:00a.m.. Yes, Thursday was a very long day. They removed the stent which goes from the kidney through the ureter and into the bladder. They replaced it to help get the rest of the infection out. Unfortunately, somewhere from the O.R. to recovery it got kicked out. ? The stent was scheduled to be removed on the 24th of the month, so they decided not to put him back under to replace it. Hopefully, the antibiotics will clear the rest of the infection out quickly.

Even with all this going on, Zachary still found time to show off his new walking ability and flirt with the nurses !

Kiley is doing well, riding her bike and constantly wanting to play with her neighbor friends. She starts vacation bible school this coming week and is very excited.

Wade

I will start by telling you Zachary has been walking for almost 2 weeks now!
The butt scooting was alright, but he knows he can cover a lot more area now by walking around. He is still being feed by his G-tube and is trying to eat by mouth. He is not interested in baby food, but is willing to try everything else. Zachary is looking good, although his lab work is not.

Today, he is going to have surgery, or I should say tonight. He has an infection and they are going to remove a stent that is placed in his kidney. They are going to replace it and put him on IV antibiotics. In a couple days it will be replaced and hopefully he will be able to go home.

-Wade-