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>

Tuesday we had an appointment for IVIG, to help boost his immune system. We have a doctor come down to see Hayden while we are in our day treatment room, that is our BMT clinic appointment too.  A 2-in-1 appointment!

Counts came back normal, except for the BUN. It was very high this week (49) which means the kidneys are not happy. That is really weird because we are decreasing his Cyclosporin med each week, the BUN should be going down slowly. So we just had to increase his fluids at night from 250ml to 500ml with sodium. That just means they will run 8 hours instead of 4. More sleep for me, unless he creases his tubing like he did last night. He is hooked up to a pump that beeps until the tubing is cleared again. Of course Rick NEVER hears the thing beeping, just me! the sodium is to increase his acidic levels, which is a serious thing, but why not add it if we are doing fluids anyways.

Unfortunately, we are staying home for Thanksgiving, Rick and I and the kids will enjoy each other’s company all day with a turkey, and the fixings to eat throughout the day too! We plan to decorate the tree and by the time Rick and I are done making the food, we will be ready for a nap!

Hayden’s cold is getting better! He will remain on his inhalers throughout the virus season to keep his lungs clear and hopefully keep him out of the hospital. The lung Dr. thinks he has viral indused asthma, so with that diagnoses, we will keep up with inhalers and hope he doesn’t get any other sickness!

Hayden is very excited to be sporting a new pair of shoes-Robeez, he loves things on his feet, so I hope he will be able to walk a little better with these than with his slippery slippers! Robeez are a leather slipper-like shoe that cost an arm and a leg, (but I got my online, clearanced, so they were cheaper) but so worth it. Abby had pink ones w flowers on them, and she lived in them. You can wash them and they STAY on their fat feet too!

 Happy Thanksgiving!

We finally were told that Hayden can go home tomorrow. With one antibiotic remaining, plus his other BMT meds we will continue to get IVIG regularly-once a week I am thinking and go back to weekly Dr. appointments to watch the lungs. We have a game plan coming from the Pulmonary doctor as well. Doctors now think that the spots they were seeing in the lungs were that of aspiration. Last Monday he threw up mucus, which strained his lungs, which are weak to begin with. It is either that or pneumonia which they have been treating with the antibiotics. Also, since Hayden has asma (spl?) they will increase his dose of Flo-vent to keep the airway open. Flo-vent and Albuteral inhalers will be given in the morning and in the evening as we have previously done. But Albuteral will be given every 4 hours to keep his airway open through these colds. Not a whole lot of change in our routine.
We can’t wait to be home. Staff is great here but home is where we are most comfortable. Grandma and Grandpa Augustine were down today to look after Hayden while I went into work for awhile to get some stuff done. It was nice to get out, even if it is cold out. Rick picked up Abby from daycare and came to the hospital too to see us and Grandma and Grandpa. It was nice to have a meal with the family again.

We now have to get Abby’s tonsils out on Dec. 5, so we will have a week of nursing her back to health with ice cream and popsicles!

Home sweet home tomorrow!

We were only suppose to stay 2 days, but doctors can not determine if the pneumonia is viral or bacterial. They did a CT of his chest yesterday afternoon and determined it is NOT fungal which can be deadly after the BMT. They did see a coating on the brochial tubes attached to the small tubing of the lungs. The plan is to watch and see if the two antibiotics that he is on will do the job or if we have to do a brochial-biopsy to remove a sample of the growth on his lungs to do a biopsy. I have heard that this biopsy is painful because they put a tube down your throat to access the area. He would be sedaded again.

He is in good spirits, playing, riding on his firetruck around the room and listening to his songs that sing his name-an early Christmas present. Shhh cause Abby gets one too with her name sung. www.poopsies.com
Hayden is coughing some, and still remains congested but it doesn’t seem to bother his sleep and activity or eating.

Today Rick comes to relieve me for the night. We both have lots to do at work, so it is hard trying to decide who has to stay with Hayden and who can go to work. By Tuesday, hopefully, we should be ready to go home with whatever medicines he needs to be on.

Hayden was suppose to have a CT on Wednesday but his cold is getting worse. The nurses checked him out and found him working hard to breath again. Tuesdays visit showed a little raspiness in his airway, but it became worse overnight. They concluded he wasn’t able to undergo the CT but we did an x ray instead which showed pnemonia in 3 of his 5 chambers of the lungs. He was breathing pretty calmly for that a large of area.

We should be in the hospital until Friday, they hope to try to do the CT on Friday to further detect the extent of the infection.

I will keep you posted!!!!! He is in good spirits, just tired and ansy to be on the floor!

My present was already given to me on July 11, 2008. A second chance for Hayden to live a long, normal life. Thank you UW Children’s Hospital for that wonderful gift! You really think twice about material things when you face medical issues like this.

Hayden is spending these warm days with Grandma JoAnne and Cassie (chihuahua) at our home. She has come to help out with Hayden until Wednesday! Today it is 70 degrees out so they have probably been on 2 walks already today. More to come this afternoon. Hayden just sits back and looks around with his little mask on. He loves it and it tires both Grandma and him out!

Hayden’s hair is also coming back nice and thick. It doesn’t appear to be real red, more darker, but that can change yet. He has facial hair too, but we won’t worry about that-that and the eyebrows will go away once the Cyclosporin goes away.

Hayden has some visitors this past weekend, Uncle Kyle and Aunt Katie stopped over to see Abby and Hayden. We can’t wait to be able to go to the zoo with Uncle Kyle and Aunt Katie once Hayden is better!

This week we didn’t have a clinic appointment, his levels came back normal last week except for the BUN, which was at 36, very high, so we continue with fluids at night and push liquids during the day. His T-cell count was climbing nicely which controls the immune system.

We are watching his teething again, he gets a stuffy nose, usually while he sleeps and then he wakes up cause he can’t breathe well. So once again I am up alot at night responding to his needs. Little noses vicks rub clears him up a bit plus an eyedropper of tylenol for the pain.

Rick will be solo in caring for the kids this Saturday to Sunday, while I enjoy a little get away with the St. Phillip girls to Galena, IL. where we will leave the children behind but probably talk about them the whole time. It will be lots of fun!

For Halloween Abby went as a princess witch and a princess (changed twice) while Hayden helped hand out candy at the door with Daddy. Hayden wore a black shirt with a skeleton and a little red heart on it. His Haloween socks lit up as he moved around too. We had the hospital gown, mask, stethiscope and blood pressure props on deck, but we didn’t need them this year as Hayden didn’t go out.

We haven’t received Hayden’s lab results back yet, but with what Dr. DeSantes concluded on Tuesday’s visit, he is looking great! We have once again decreased his cyclosporin to .7 twice a day. (5% decrease) and stopped his Raninadine (stomach antacid)  and decreased his Isradipine (blood pressure med) to 1ml twice a day. Less meds for him to take. We will still continue with his antibiotics for flungal infections and viruses, and his inhalers to keep those lungs clear and junk free.
 We continue to give him fluids at night to keep his kidneys happy, again his BUN is at 36, way too high. Once the Cyclosporin is stopped then the fluids can stop and I can start to sleep through the night again.

This past week Grandma Sue was in the hospital for blood clots in her lungs, she is doing well and expects to come home this week yet, we miss her and truly realize how lucky we are to have her around during the week to watch Hayden.

Hayden has stopped signing all together now. This is frustrating because all we hear is whining. He looks at me with a blank look each time I show him the sign. I can’t tell if he has just forgot them or if he is just being stubborn.