The weekend of July 11, we will celebrate Hayden’s 1 year Stem Cell transplant Anniversary. We look back and still can’t believe what he has been through and how great he is doing. He is down to only 1 medication, which is the Acyclovir for Anti-fungal and has not needed his inhalers for Asthma since the warm weather settled in Wisconsin.

Despite efforts to stop the IVIG, we decided it was in Hayden’s best interest to keep going with it. The antibodies act as vacinations giving him the antibodies to protect him from Chicken Pox,  Mumps and Measles.

Hayden has recently been re-evaluated for his milestones through Wisconsin’s “Birth to 3″ program and he is looking good in all areas but speech. So we will be working with him through exercises to help him along. His socialization was pretty normal considering we are just introducing him to things he hasn’t experienced before.

Next week he will start going to the daycare providers home to interact with kids his age which will help him overcome some of his attachments to mom and dad. It is common for his age to have some separation anxiety but he is always with someone, so playing alone, with someone out of the room, is foreign to him. Hayden also is showing signs of sensitivity to sounds, so we follow that as well. He is scheduled for a post-transplant hearing and eye test next week, so we will have to see if results come back normal.

For going through Chemo, these are very small issues we have to deal with, and they may not be issues at all, just delays which will come about in time!

Hayden is having a blast trying  garden foods, such as berries, watermellon, and veggies. He loves them and will keep eating them until we cut him off. He eats about 3 bananas a day and loves wheat thin crackers with cheese! Abby is learning to keep her toys close, as Hayden loves to play the destructo game with them just as she gets them all set up.

This week the kids are staying with Grandma and Grandpa in GB while our kitchen goes through a rennovation. They will have a busy week playing at the park, going to Bay Beach, and teasing Grandpa!

Next Tuesday is the next Day Treatment so we will have a full day of Dr. appointments. Hopefully we will find out the status of his T-cell growth at that time as well.

It really has been a long time since we wrote-we apologize. We have been enjoying our freedom bringing Hayden out to experience new places and practically living outside!

Since April, Hayden has been circumcized, been camping and got to swim for the first time!

We brought Hayden to St. Mary’s Outpatient Surgery Center to have the circumcision done the end of April. He was sedated at 8am and was back in our arms by 8:30am. He went through a few days of pain but really healed fast considering it is a sensitive area. If he didn’t know before he certainly found out after the proceedure where his peeper was. He was a trooper non-the-less.

For Mother’s Day we went up to Green Bay with plans to go to the NEW Zoo (Northeast WI) and celebrate Mother’s Day with my mom, but it turned out to be very cold and rainy so we just hung out and enjoyed Grandma’s toys. This was the first road trip up to Green Bay since Transplant isolation.

The last weekend in May we packed up the bikes, camper and dropped the dogs off at All 4’s Pet Camp and headed up to Horicon Marsh to bike and camp. Once again it was crappy weather but Hayden and Abby still had fun camping and playing in the camper. This is where Hayden got to swim for the first time. The pool was indoors so we suited up, bundled up and jumped into a warm pool to play. He was apprehensive at first but quickly became relaxed as we floated him around. It was a good depth that Abby could touch bottom and swim on her own with us.
We can’t wait to try the outdoor pool if it ever warms up!
On Sunday of our camping trip we loaded Hayden in the bike trailerbehind Rick as Abby rode on her tag-a-long bike behind me and set off on the Horicon Bike Trail. I quickly found out how out of shape I am but managed to last 2 hours-barely! It was still fun!

The auto-immune doctors have decided to keep the IVIG going on a monthly basis. they explained that it protects his system from viruses and has the antibodies that Immunizations have, so we got the OK to send him to daycare. Only problem is, Marci doesn’t have an opening for under 2yr of age. So we will continue to wait for his Birthday to send him. Abby will still be there until the end of August to help him adjust to the routine and other kids. The doctors feel his system is strong enough for this and think the socialization is most important at this age.

Hayden was assessed for Birth to Three again. His last assessment was before transplant. They tested him for both 20mths and 21 mths old and both results came back above average with verbal skills being right on the line. We will have a Speech Assessment done through play activities and that can better determine what exercises we might do to help him verbalize more. We aren’t real worried because he is still young, but anything we can do to help him along is a
good!
Other than that, there is no sign of side effects from the Chemo. and that can just be his normal developement with a big sister to talk for him and carry him around.

Hayden is really liking his bubble lawn mower (Abby’s old one) to the point that he brings it inside each night when it is time to come in. Abby just got a new pink one for her Birthday this week. They would fight over the old one so Grandma (spoiled Abby and) got her a new one!

He also is all about his trucks and tools lately, which is so cute until he starts to hit the woodwork with his hammer or truck! We haven’t been too successful in taking the pacifier away, but we have been taking it from him during the day and he gets it back at night. We have tracked down and bought a new cuddly online, but he looks at it and throws it aside if he knows where the old one is. But as a piece of mind, it is nice to know that if the old cuddly gets lost, we have a substitute!

This past Tuesday was our last IVIG treatment forever! Unless he gets sick, then we will go back to boost his system. But knock on wood, so far so good.

He did wake up with a slight fever this morning and just wanted to be held all day. Lori watched him and she is one GOOD cuddler! I think it is a slight reaction from the IVIG. They used to tell us that he could react within 48 hours of infusion. It is with in that time frame.

Abby started swimming lessons yesterday so we all piled in the van and packed some treats and stroller and hung out and watched Abby swim like a fish. Hayden is having so much fun just watching everyone and everything. After being isolated in his home for most of his life, this is so new to him.
He is very content sitting in his stroller eating crackers and playing with his toys. That works for me because I still watch for germy areas and won’t let him touch things until I wipe them down.  A little anal, but we still have a right to be until vaccinations are all up to date!

Hayden is talking up a storm, he says at least 10 words but new words are popping up each day! He doesn’t say “no” it is “naaa” as he shakes his head back and forth. So cute!

I am just putting the finishing touches on my Red Cross Speech, just waiting for Rick to edit it, then I will post it for you all!

Remember, no news is good news at the Blatter house!

KB

After 9 months of isolation, Hayden is free to go out and enjoy life! It is hard to think of being home-bound for most of his short life. Now Rick and I have to loose the mindset of isolation. Since he has been diagnosed we have kept him away from the general public, so we find it difficult to change our ways. A person becomes aware of germs on carts, library books, church pews, schools and restaurants. Did I miss anything? Of course the workplace too!

We have planned to catch up on many zoo visits, camping trips, train shows and of course take Hayden fishing with dad!

Hayden’s day treatment appointment on Tuesday included his monthly clinical, which went well, and an IVIG. Since he does not have his hickman, nurses had to put in an IV which went well. They put the IV in the top of his hand so he could still use his arm and hands.
They wrap his hand up so he doesn’t pull the IV out. It looked like he had a little cast on. At least they used green wrap to celebrate St. Patrick’s day!

I still will continue to wipe down the carts and high chairs a the places we visit, until we revaccinate him in July. On Friday we have an appointment with the Urologist to consult about his circumcision. (sp)

Hayden’s is talking a little bit but we are going to address this with 0 to 3 program to make sure all areas of his hearing are normal. I didn’t talk until almost 3, so I am not as worried as Rick is. It is a normal concern, I know.

Hayden is enjoying his stroller rides with the caregivers, mom and Abby. We have been to the park in our neighborhood 3 times already since the warm weather knocked on our door! This weekend I plan to bring them to a bigger park, if weather permits, to have a picnic!

We still have to stay out of daycare until July. With him not being fully vaccinated, there still are risks with being around other children. With Rick working so many hours now during tax season, it gives him the opportunity to take some time off in summer to stay with him when Grandma, Liz and Lori aren’t available. I have a busy summer at work with events, so this all works out well!

KB

I came across this song the other day. I first heard it on David McNally’s web site. When we first found out Hayden’s WAS diagnoses, we started looking for anyone/anything to give us encouragement, we found hope on the McNally’s website. The song is written by Mark Schultz really summarizes it all!

http://www.youtube.com/watch?v=VgEDOOOi2r4

This is for Declan, who is going through his WAS Bone Marrow Transplant right now and Ayden, who will start his BMT in March and all the other little boys with WAS-you are loved and so many people are praying for your strength! You will beat this one day at a time! One transfusion at a time!

Hayden is doing well with out his hickman. We had to go three days without water on the hole to allow it to heal from the inside out. It has already scabbed over and appears clean and infection free. It is so nice to strip his clothes off and just put in the tub, with no dressing to put over his hickman area, no dressing change afterwards and no worries of him pulling on the hickman or having it get caught on furniture.

Hayden is still on the BMT antibiotics to prevent infection until July but off of all steroids. We still lather him with Hydrocortizone 1% cream once or twice a day to decrease the redness or rashing.

His craddle cap is getting better, no more scales but now we have flakes and if his head gets dry enough he scratches it and it sometimes bleeds. So besides using the Neutrogena T-Sal at bathtime, we rub on Baby oil with a cotton ball to keep him moisturized. I mentioned a Red Ken shampoo, called Baby no more tears, well, I was told by my hair stylist that Paul Mitchell only has a dandruff shampoo called Baby no more tears, so I will hunt that down to test it out!
We really need to find a happy medium. And when we do Aimee McNally will be the first to know since David also suffers from this.

Hayden does have a mild cold right now, but the inhalers are still doing their jobs, so hopefully his body is strong enough to step up and wipe this cold out soon.

Today I was invited to speak about Hayden’s WAS journey at an American Red Cross luncheon in May. They heard of Hayden’s story through the Blood drive at my work that happens every couple of months. In order to motivate employees to sign up to give blood the DOR Communications staff feature people, on our intranet, who are directly effected by blood donations. Hayden was featured for one of the drives and it got alot of attention.

I will put together a PowerPoint photo stream and speak about the key points of Hayden’s disease and how blood donation directly effects WAS patients. I am excited to tell his story, but I only have 20-25 minutes to do so, so I plan to write out important points to stay on track. I could be there all day if I don’t!

After 7 hours without food and 6 hours without drink, Hayden finally has his hickman tubing out of his chest! He has a small bandage where the hole is-where is came out of his skin. The bandage will be changed daily for the next three days to protect it while it heals from the inside out.

Our IVIG was moved up to 10am yesterday, then we were to follow with his hickman removal at 1pm, well that was before Hayden helped himself to a cracker in his diaper bag. Half of it fell onto the floor, while 1/4 of it made it into his little mouth. After 9:30 am Hayden wasn’t suppose to eat for sedation reasons. It didn’t even occur to me until he was back on his chair munching away. Then I told the nurse and that is when we had to move it back to make sure all the food was out of his stomach so he wouldn’t vomit and exasperate.

So 3:30 was the new time to remove his hickman. It was so hard to keep Hayden occupied without food for that length of time. We were able to take a stroller ride around the hospital (with his mask on) and visit people. He napped for two hours so that helped and then we played in the playroom.

Three thirty came and went and finally by 4:45, when Hayden had stopped whinning and asking for food (sign language) he fell asleep on his own in his stroller. It was about 5pm that the hickman specialist finally answered her page and came down to start things. It took 6 minutes for them to take out the tubing but about 20 minutes to sedate him even though he was already sleeping~weird.

He woke up slowly, but once he was up, he was HUNGRY! He drank some water and ate applesauce, vanilla wafers and some cheese curds. We finally walked out of there at 7pm-long day for him and me!

We picked up Miss Abby and went home!

Tomorrow we go to get IVIG one last time through his hickman. Then it will be removed after that. He will be sedated so they can remove it. We will continue IVIG on a monthly basis using a regular butterfly IV in his arm or leg.

 Wish him luck!

Hayden is doing well being off of fluids and antibiotics.  We still have to watch his fluids, to keep that BUN level down, but Hayden and I have had solid sleep since last Monday!

We are now battling his Eczema again. I find myself lubing him from his head to his little toes. His head is the driest area and I have tried baby oil, and now Neutrogena T-gel which made his head red. I am going to pick up RedKen no tears, which Dr. Taylor suggested and I should have got in the beginning.

Hayden’s dermatology appointment isn’t until March 18, which is so far away!

Tuesday’s check up and IVIG went very well. We got good news that Hayden’s T-Cell count is at 40%. This means that his immune system is up to 40% strength and is producing new cells from the core. Dr. Seroogy (immunologist) says the new system is that of the new stem cells. The new stem cells are doing their job!!!!!!! Back in August, Hayden’s BMT was shown to be 100% engrafted and on day 100 his T-Cells were at 9% so his body is really working hard to get back to normal. We are so excited and proud of our Hayden man!

Also, Cyclosporin is DONE! He had his last dose of .2ml on Monday evening. As we brought him down from .4 to .3ml, we noticed some rashing occur. I applied Hydrocortizone cream and lots of Eucerin lotion twice a day and the rash has gone away for the most part. He still is extremely dry and the Eucerin and Aquafor creme is still needed. He is very lucky that his GVH was so short lived and mild.

Since the steroids are done so follows the 250ml of fluids each night and the blood pressure med. His BUN level is at 13, which is normal and this number tells us the kidneys are happy without fluids. We still have 2 more weeks of antibiotics (Nafcilin) to give every 6 hours through the gravity drip IV. I can see the light at the end of the tunnel!!!!!

Hayden’s pneumonia seems to be contained and we see no signs of a blood infection. He still has a loose cough and runny nose but has a great appetite and energy level. He is now telling us when he wants to sleep by either bringing us up to his room or nodding yes when we ask him if he wants to sleep. He is like clockwork with his two naps, which is sooo good. I tell him he has to rest his body and he nods yes!

Hayden has discovered where his coat hangs in the hall, so he wants to put it on and go Bye Bye, it is so hard to tell him no. Soon he will be free to go! For now, he walks around the house with his coat and Packer hat on waiting to go somewhere.

I had to bring Hayden in to see Dr. Taylor on Monday. As I was vaccuuming the livingroom Hayden joined Abby upstairs, Abby shut the door into my room and I stopped the vaccuum to go up there. As I opened the door to yell at Abby for playing in my room, I see Hayden sliding off the bed into the night stand. He cut his right eye a bit. It was bleeding so I checked to see how big of a cut was there. Just to be safe I called Dr. Taylor, his Pediatrician at Dean Clinic. The nurse Pauletta told us we should get it checked out. This time of year clinics and ERs have lots of germs and viruses lerking around, we are to stay away with Hayden’s immune system being so weak, but I really was afraid it was worse than I could see. Dr. Taylor took us in right away and no stitches were needed.
Abby cried that his eye was broken! I told her accidents happen and that mom makes rules for a reason-no more monkeys jumping on the bed!