Christmas Day we got up to open presents and Hayden decided to give Mom and Dad a present-he started walking! It wasn’t just one step, he showed us that the Friday before, this was full blown walking from the couch to the love seat directly across the room. I had to do a double take, as he walked through torn wrapping paper. He had a mission and he didn’t even realize he was walking. Hayden is now 16 mths old and has finally conquered a huge milestone! We are so proud of him. With that being said, we now can’t keep up with him, he wants to go, go, go!

On Sunday we were sitting down stairs in the family room watching Hayden ride “Snowy” the jumping horse that Abby named and Hayden pointed to a picture on the wall of Abby and said her name! aabee He was so proud of himself as we were of him. (and yes, of all the wonderful toys the kids got, Snowy the big springy horse is still a favorite, thanks again Kostoulas family!)

The kids must have been really good this year (Santa must not seen the time outs Abby had) cause our tree  is surrounded by cool toys! Hayden got a couple Little People things like the airplane, garage shop, and John Deer tracker w/trailer-all just so cute. Abby got a Dora cash register, which actually scans with a red light. And Barbie furniture from Aunt Kristin and Chris. The take 19 batteries in all IF we put them in each item. She doesn’t know that they do things though, shhhhhhh.

Rick and the kids got me a Zen, which is like an IPOD, but cheaper, so I can put my songs (country, yup) and the kids songs on it so we have them no matter where we are, hospital, camping or just driving up to Green Bay or Iowa! It is perfect and I can’t wait to get all the songs on it-when I have time!

It was a quiet Christmas at home but really special since we can’t stop celebrating Hayden’s life!

Hayden is getting a cold which seems to be going okay, with his inhalers doing their job. He is restless at night, but seems to be pretty quiet during the day and not working hard to breathe, which is when we would bring him to UW Children’s to be seen.
He still has a bumpy rash from three weeks ago. I thought it was from me changing his lotion to Aveeno, but once I went back to the Baby lotion it still remained. If he was breaking out from the new lotion, I would think it would have calmed down by now. We can’t help but wonder if it is his teething or the decrease of his steriod meds, Cyclosporin. Even Benedryl didn’t take it away. I just talked to another WAS mom who’s little guy had bumps with his GVH, he is at +26 days post transplant. I called the doctor and we are to go back to applying hydrocortizone cream on three times a day plus the Eucerine lotion. I hope it works!

My goal now (I am always going crazy over something, OCD?) is to contact OPRAH to see if we can get the word out about Wiskott-Aldrich Syndrome. This disease is so silent, it would be nice to give new moms a heads up on WAS symptoms! And Bone Marrow Transplant donations! The other WAS mommies and I would love to meet and this could be a good way to do so! And maybe help out those families that are financially struggling with this long expensive journey! Only if there was more hours in a day…..

Abby is spending a couple of days in Green Bay with Grandma and Grandpa and Kristin. Abby is busy playing Barbies there and is going to visit her 2nd cousins Zoe and Zach today. When I called this morning, Abby was waiting for Grandpa to get home, it was only 10am-she has a long wait until 3pm! It is nice to see her enjoy her visit since we can’t all go up there until Hayden is out of isolation!

Have a wonderful New Years and thank you all for the wonderful support and prayers you have given to Hayden and us over 2008. You all have kept us strong and we thank you for that! We can’t wait to celebrate with you, Hayden’s recovery, in 2009!

As we went through Hayden’s BMT this past summer, we met a lot of wonderful parents who were going through challenges with their child. Sally was one little girl who really tugged on our heart strings and the nursing staff’s as well.

Sally was a beautiful 2 year old, with Down Syndrome as her first hurtle, and Leukemia as her biggest hurdle. Abby and I would see Sally and her mom in the playroom at AF Children’s Hospital and we would watch Sally go through all the toys, one by one, play with them and continue on to the next as any 2 year old would do. She was precious with a loving, supportive family to match!

Sadly, Sally died on November 24th from her unbeatable Leukemia. In her short 2 years of life, she touched so many people and showed us such amazing strength (”Strong like a bull” her family would say, like her stuffed animal bull!) Sally will be missed by us and many, many others.

SALLY WANDA KATARINA DUNKLAU 2yrs. 10 mo.
Jan. 23,2006 - Nov. 23 2008

We are back to once a month for the IVIG day treatments. Clinic is still each week for awhile until we feel Hayden is doing well enough to stretch it to every other week. Really no other changes. We are continuing with his nightly fluids of 500ml until his cyclosporin is done (I say 4 weeks, Rick always says longer) so either way the full night sleep for me can come after that has ended! hmm, sounding so nice!

Counts came back normal, forgot to get the printout from the Day treatment nurse for exact numbers. His platelets are still in the 300,000 range, which I am still jealous of!

Hayden’s Asthma (thank you Bob for the correct spelling, brain freeze there)  is doing really well with his inhalers. We bumped him up to 110mcgs for the flovent which really makes a difference when he is huffing and puffing.

 It has been almost two weeks ago now since Abby got her Tonsils and partial Adnoids out, she has done a great job with healing and tolerating the pain. She is now off her Tylenol with Codein but we still continue to eat softer foods until friday. Day 2, Abby was even eating eggs and Mac N Cheese which we thought won’t happen until week two. What a little champ!

This Christmas we are staying home to keep away from any viruses that may be lingering in other homes. We welcome family and friends to come and visit if you are well, with no existant cough or sore throat.  

Hayden is all about cruising the house, up and down the stairs, and breaking into our bedrooms to get into things he isn’t suppose to be in. He loves sitting on Dad’s top shelf of his closet and pulling his caps off their hooks (while Rick holds him of course). Now Abby is really watching her Barbie dolls accessories so he doesn’t put them in his mouth. Hayden loves playing with Abby’s horses from the Barbies and moving the Barbie furniture around in her Barbie house. Of course this angers Abby and she yells at him and he laughs back at her. It is starting already.

 These past few weeks we have been in contact with new WAS families. I am so sorry we have to meet this way, but I am so happy we all are getting good care to control the issues.  Meanwhile I feel very fortunate to be able to discuss Hayden’s history and his current challenges with you all, and hear all your stories and challenges of your son or yourself. I feel God has given Rick and I this challenge to allow us to meet and potentially help other get through this long but-oh so worth it-journey.

Check out the “20 takes” of the Christmas picture for our card. I should have minored in photography with my design degree! Maybe they would have turned out better! I suppose it won’t be so funny then…

Happy Holidays and safe travels!
Kami

This is Rick, I haven’t done a post in a while. 

Not much new to report from Hayden’s appointment on Tuesday.  His BUN level is down to 36 which is still too high but much better than last week, I guess the eight hour IV is helping.  His breathing is the same, not getting any worse and the inhalers are helping. 

He is down to 4ml in the morning and 5ml at night for the Cyclosporine.  This is down from 9ml morning and night.  Going down 1 ml per week he will be off completely in 9 weeks.  This means his immune system will be able to do it’s job without being suppressed.  Remember it is suppressed to prevent GVHD, which is when his new immune system identifies his body as foreign and tries to destroy it.  To date he has had very few symtoms of GVHD, and currently he has none that we are aware of which is great. 

Little Abby is doing okay.  She’s in pain and is uncomfortable but is being a very good girl.  She had her toncils and adnoids removed yesterday.  Everything went fine.  The doctor said her worst day will be in about five days, with her being fully recovered in about 10.  Right now we are letting her do whatever she wants and letting her eat whatever she wants.  She has been watching movies  and eating popsicles, orange sherbet ice cream, apple sauce, pudding, and eggs.  The egg (soft) eating is probably unique but so is my little girl.

I’m going to put some new pictures on that show how big Hayden is getting.  You can also see his hair.  He looks good, it has grown to about a quarter inch all around which is a good style for him.  Maybe I’ll see if Kami will do some photoshop work putting him in one of my old military pictures when I had my hair about that length. ¼/p>