I just scheduled Hayden’s and my blood test that is to be sent to Washington for Dr. Hans Olof to test. This will help give us answwers to Hayden’s makeup and whether or not I am a carrier, which I am pretty sure I am. Also, with Hayden, his past blood tests show that he has no protein makeup present in his gene, but yet protein is detected from tests. This can give doctors answers as to what this means for Hayden and other WAS patients.

Get this, I will get my blood drawn at St. Mary’s hospital lab, but no one there who has the experience to draw it from Hayden’s hickman, so they have set it up for me to draw out 10 ml of his blood into a vaccuum tube at St. Mary’s. After I hung up with the genetics nurse I started to think that this is an aweful lot of blood to take from him without having an experienced technician doing it for us. Also, I am sure we will be fully charged for MY services! Right now I draw 1ml of blood which doesn’t effect him. This is getting a little rediculous with the Dean vs. UW insurance thing. We really hope this isn’t the beginning of a insurance fight.

We are still waiting for any word on the WAS boy we heard of in Green Bay. I am guessing that he has to go in for some kind of treatments at one of the hospitals in WI.

kb

Today we go for platelets and IVIG. Once a month we have been giving Hayden IVIG treatments which keep his immune system strong. So far so good.

His platelet count was at 32k as of yesterday, so our usual Wed. visit to day treatment is right on schedule. We were at UW again yesterday to discuss Hayden’s treatment plan with Dr. Desantes, our BMT Dr. As it stands right now we are looking at the end of June for this to start. We originally planned to have it start in mid June, but we are still waiting for Urology at Dean to get their act together. Just let us do it at UW so everyone is on the same page……so far this is our biggest problem. Not bad for something so serious! I will have to find out how to pronounce the drugs we have decided on, as of now we call it “Bue-Flu” which is two drugs that work hand in hand to suppress the immune system while the “Bue” destroys his marrow. Sounds so scarey!

Since we aren’t having a birthday party with family this year for Abby (to eliminate new germs from coming into our house) we decided to get Abby something special to celebrate her 4th birthday coming up in June.  Abby has wanted a trampoline ever since she jumped on her 2nd cousin, Zoe and Zach’s in Green Bay. But so did mom and dad!
We found one at a great price so she is now bouncing off the trampoline walls instead of the house walls!

We are enjoying it too. Hayden will sit on the netting while one of us jumps gently, he thinks that is pretty neat too. Just one more thing for us to cut around when mowing the lawn!

We have been so busy lateley, I had to be reminded to update Hayden’s blog… sorry!

Friday night we packed up the whole family (dogs too) and headed up to Kaukauna for Rob’s wedding, Rick’s middle brother. Since Abby was asked to be a flower girl, we had to attend the rehearsal at church, which was almost 2 hours away. We skipped the dinner cause we had Hayden and the dogs with us. We get very nervous having people breath and touch him plus the restaurant high chairs are very dirty! It is amazing how your mindset changes in common public places.

We headed up to Green Bay after the church rehearsal to stay at my parents house instead of a hotel. Another germ infested place for Hayden. The wedding was at 2pm the next day so we had alot of down time to hang out.

Hayden stayed with my parents while we went to the wedding. Abby and her cousin Corinna walked down the isle with no reservations! They even stood in front of the alter blocking the way of the bride and groom, the pastor had to move them into the pew. They really enjoyed dressing like princesses and dancing.
Their was a horse and carriage that brought the bride and groom to the reception hall which the kids got a kick out of. The horse and carriage belongs to Rick’s cousin Joe and Kristi, they actually have a small business that they will bring “Sky” and the carriage to an event for a fee. It is called “The Sky’s the limit”. Pretty cool! They live in Markisan, WI.

So after hours of fancing Abby was pooped at 10ish and didn’t get up until about 8:30 Sunday. We had to go back home Sunday since I was to work Bratfest in Madison for work that day.

Monday, Hadyen and Abby went to the zoo with uncle Kyle and Aunt Katie. I tagged along too since Rick was installing a new garage door on the garage. This was Hayden’s first zoo experience, and I think he watched the people more than he watched the animals. His expression was “I have two big dogs at home, these animals all look alike….” If he could talk, he would tell you his favorite part of the zoo was eating ice cream!

kb

Too much to do, not enough time in a long weekend!

Today Rick brought Hayden to day treatment for platelets. Today is Rick’s birthday too! So he got to spend most of the day with Hayden, what better present can he have! We check platelets again on tuesday, so we should be safe for the weekend.

We are tentatively scheduled to start the bone marrow transplant in mid June, provided all tests go well and a room is ready for Hayden. We have the Bears test (hearing test), MRI, Kidney test, and EKG test.

Monday’s platelet count was at 43k. No need for platelets Monday so we put it off until Wednesday, not thinking how busy Wed. is for me at work! We have an Employee Appreciation Day which Special Events is helping out with by having the Moolas present and shooting off the T-shirt gun into the DOR crowd. So, Rick will be taking Hayden for his transfusion Wednesday at 1pm.
What a good way to celebrate his (Rick’s) Birthday but with Hayden!

Hayden has been being spoiled by Grandma and Grandpa Augustine Monday and Tuesday of this week. They came from GB very early Monday morning to watch Hayden while my dad works on completing the downstairs bathroom. It is almost done! Abby wanted to go to daycare but gets their full attention after 5pm!

Sunday, Hayden had his first greenhouse adventure. Each year we go to Country Bloomers Greenhouse off Hwy 19 in Token Creek. It is family owned and they grow really hardy plants for a great price. This year we decided to check out another greenhouse towards Madison on Hwy TT, it too is family owned and they have beautful plants but a little more in price. Rick was looking for his usual tomatoes and peppers while Abby, Hayden and I set out to find blue flowers for our flower garden. This year I decided that the garden will be dedicated to Hayden, since he has to most beautiful blue eyes, it is only fitting that we have blue as the focal point. We found a Sylvia that has brillian flowers (I think they look purplish) and something else I don’t know the name of that grows a little shorter. Abby wants to sign too that tells about Hayden’s eyes, I told her we can just said “Abby’s garden in honor of Hayden”. I think I might need one or two more plants to fill the garden, so if anyone else knows of a pretty annual or perrenial that has blue blossoms please let me know! kami.blatter@gmail.com

On Saturday Hayden spent the day with the girls. We went over to Grandma’s house in Lake Mills to assemble wedding programs for Rob’s wedding. With Hayden in his walker chasing Abby and Corinna, we were able to get things done. He didn’t have an afternoon nap, so by the time Daddy came at 6pm, he was really ready to sleep. We all went out to dinner and Hayden slept right through it!

kb

On Thursday Rick and Abby ran an errand and then picked up ice scream from Dairy Queen. They were nice enough to bring me back a Dilley Bar! I took the chocolate off the top and put it to Hayden’s mouth, he looked at it for a bit, then opened his mouth. That was the last that I saw of my Dilley Bar! Hayden loved it and even liked the cold in his mouth,especially with teething!

As I took away the Dilley Bar from Hayden he would use his voice, that he has recently discovered, and would scream.  Since that is my biggest petpeive of kids in public, it really gets my attention. But since he is just learning about his voice I can tolerate it, but that won’t fly for getting what he wants later on. It did Thursday!

We noticed no reaction from the dairy that day or the next. So hopefully dairy won’t be an issue for him. We still are being careful to watch for any reactions with yogurt.

As I sat with Hayden yesterday afternoon watching those awefully red platelets go into his body, I wondered about the whole platelet process. Remembering back to living in the Appleton, Community Blood Center, I know that once a person gives blood, it is spun down in the Centerfuse and separated into the little bags and frozen. Hospitals would call us to deliver the plasma, platelets or red blood cells by blood type to the hospital via cab.
Of course I am forgetting the most important parts which I never was involved in.

So I looked it up and here is some info on it…

What is done with donated blood?
Typically, each donated unit of blood - referred to as whole blood - is separated into multiple components, such as red blood cells, plasma, platelets, and cryoprecipatitated AHF (antihemophilic factor). Each component can be transfused to different individuals with different needs. Therefore, each donation can be used to help save as many as three lives.

Who needs blood?
Under normal circumstances, every two seconds someone in America will need a blood transfusion. Blood transfusions are used for trauma victims - due to accidents and burns - heart surgery, organ transplants, ITP patients, women with complications during childbirth, newborns and premature babies, and patients receiving treatment for leukemia, cancer or other diseases, such as sickle cell disease and thalassemia.

Go to http://www.givelife2.org/aboutblood/faq.asp#4  for more blood answers.