Hayden is going through a growth spurt, still teething and then on Monday night bleeding in his ear and mouth. When I checked on him I saw blood around his mouth and one ear full of blood, and bedding too. I immediately thought he is bleeding internally but once I turn on the bigger night light, I saw he had cut his lip and ear.
I clean the blood up with a tissue. His ear wouldn’t stop bleeding so I applied A&D ointment on it until it stopped. He must have grabbed at his face (feeling the teeth pain) and it was enough to cut himself, even with short nails.

Tuesday morning I decided to call Day Treatment to move the platelet transfusion up a day from Wednesday. Since he was at 30k for Monday’s count, he must be near or below 20k a day later. It worked out since Grandma had her own appointment later Tuesday  afteroon, I only have to take off for Tuesday pm and then for this Thursday vs. Tues, Wed. and Thurs.

So, Tuesday afternoon we went for platelets, the nurses and I each gave our guess at where his platelet count would be, Denise said 12k, Tammy said 16k, and I guessed 20k. I was right on! I think this transfusion was the fastest one we have ever had. We got there at 1:05, had vitals taken, was given Benodryl and Tylenol together (worked well, since Benodryl has a bad taste to it-good thinking Tammy) and was hooked up to his line before I even had his toys out on the bed. Could it be because he had his BATMAN outfit on?

We were done and waiting out our hour (reaction waiting period) by 2:30! Those platelets were not only very red, but they were FASTER than Batman!
The redder the platelets, the better luck we have of them lasting a whole week-my theory! The truth of the matter is that the platelets expired at 2:30, so the nurse sped them up just a bit to make sure we were done by then. No danger to Hayden at all, since he has never had any reaction from his transfusions! Thank goodness!

kb

Pretty quiet weekend to report, just eating lots, sleeping lots and playing lots for the little man-no not daddy, Hayden! 

Todays count is at 30k, so we didn’t have a treatment as scheduled. We go on Wednesday afternoon for the next transfusion.

We have scheduled Hayden’s Ultrasound Appointment with UW’s Urology for next Monday afternoon, so we are track with his pre-transplant tests. We are shooting for mid June to start chemo for his transplant.

 We think Hayden is in a growth spurt, he doesn’t stop eating, especially his formula. He is drinking down 10+ ounces at a time. We start with 8 ounces and he screams for more once that is down. Between that and his teething, he is pretty crabby, but give him a little box filled with blocks or a rattle, and it pacifies him for a little while.

kb

Happy Mother’s Day moms! My gift from Hayden and Abby was a yummy cake that Abby couldn’t wait to put her finger in (Friday night) and a beautiful tulip basket, my favorite flowers! I also got to sleep in from the usual 6am wakeup of Hayden man. Dad got up with him this morning and I slept in until 7:30 when I was wakened by the choking of Rick trying to clean up a very messy diaper. I just had to get up to see the reaction of Rick.

Hayden has been very whiney these past two days, we suspect it is his teeth. Last night when I got up with him for his feeding, his mouth was bleeding, it looks like he cut his lip. Could it be a tooth? We have waited sooo long for that first tooth! We will find out soon…

Despite the yucky weather, have a wonderful Mother’s Day!

Click on the Hayden’s photo album to view the newest photos of the kids. Abby is into posing lately, so take note how she looks in the shots. She is still very much in love with Hayden. She asks for him as soon as she get up in the morning, but still has to be reminded to be gentle to him.

Enjoy! And Happy Mother’s Day to all you Mommies and Grandmas!

We decided today on which hospital we will be at for the Bone Marrow Transplant. It came down to the pros and cons for both places and what is best for Hayden as well as Abby.  After we met with Dr. Desantes again today, we were reassured that the protocal for Hayden’s BMT will be very similar if not the same as MN and the Wiskott-Aldrich disease will be watched  and addressed as needed too. We decided on……..I feel like we need a drum roll right about now……UW Madison Children’s Hospital.

Since someone dropped the ball in scheduling for our last Urology Appointment at Dean, we will go right to UW for this Ultrasound and dye test for his kidneys. This tests the function of the kidneys, to make sure they will withstand the chemo.

While we were at UW day treatment today, Connie and Fish from z104.9 had a radiothon live from right outside of Tyler’s Place (playroom for day treatment siblings) going on today 6am through Thursday at 7pm. They are raising money for the new Children’s hospital to help families with sick children. As we stopped by and a little girl, was being interviewed, she is from Portage, WI next door to Sun Prairie. She is 9 yrs old and has 3 different types of cancer. You can’t help but cry for them. They are such troopers!
You can check it out at www.z104fm.com/pages/champion08.html.

Now to make it through the hardest part, seeing Hayden sick!

kb

Rick is bringing Hayden for platelets again today, Hayden lasted a whole week since the last dose! That is a good thing, he is staying consistant. His count is at 16k right before the transfusion.

We plan to meet with the BMT doctor to get more answers to our questions. Looking at the big picture, both Rick and I really want it to happen at UW, but we have reservations as to whether they know as much about the WAS transplant as they do about Cancer transplants. We only have one chance with this. Either way we HAVE TO DECIDE NOW! We are running into issues with the kidney testing that could just be handled at the BMT hospital instead of Dean.

Also in the works, UW is setting up a lab draw for both Hayden and my samples to be sent to the top Dr. of WAS in Seattle. There, they will create lines of our make up and determine a couple of things that will help Hayden after the BMT and these tests will benefit other WAS boys through their research. They will also determine whether I am a carrier of the WAS, which I am sadly, pretty sure I am. That means that more children is not possible without the gamble of WAS happening again. This and more I will address with a genetic counselor. Maybe this is God’s way of telling me, I am done having my miracles. I will then have to accept it and put that energy elsewhere!

Off to UW daytreatment!

kb

The week has started out well! Hayden’s platelet count is at 43k which means we don’t have to get platelets until Wednesday afternoon. It is nice to not have to start the week by sitting at UW getting platelets. Hayden is enjoying the day with Grandma JoAnne, who came last night to watch him for 2 days. They have a long walk planned for today plus a few naps and of course lots of food!

We tried yogurt for the first time this weekend, he LOVED it. Rick was leery about giving him yogurt since it is dairy. We were both reassured when his stool looked normal and he had no reactions all through Saturday and Sunday. Since it was months ago when his dairy and soy reactions occured, I thought at almost 9 months of age, his digestive system should have matured to be able to break down the enzymes-so far so good. We just never know what to expect with Wiskott-Aldrich syndrome. Digestive issues are a factor in WAS.

Another thing that we learned at the MN visit is that another WI family visited Fairview Hospital recently for their son with Wiskott-Aldrich Syndrome. They are from GREEN BAY, my hometown! This is eating at me, I really want to find the family so I can see where they are planning to go for their son! Just one more mission I have!!!
***If you (GB people) know of anywhere we can find this information out, please yell and email us at:  kami.blatter@gmail.com. We think they might be at Milwaukee hospital since we haven’t heard anything about another WAS boy at UW. Afterall, we are there a lot, there would have been some mention of it without breeching patient confidentiality.

Wednesday we are scheduled to get platelets for Hayden and then we will hopefully meet with Dr. Desantes (BMT doctor at UW) for answers to a few more questions. The decision of what hospital to choose is enough to give us both grey hairs! I wish our insurance would NOT give us a choice. Either place, we are looking at about 1 month for this to all start. Our poor Hayden, he is soo happy right now, I feel so terrible making him sick and in pain from the Chemo. I just cry when I think about it. We have to think of the outcome right?

kb

Our day started out with a scheduled day treatment visit Wednesday morning. With an IVIG treatment too. We got home at about 3pm to pack quickly and pick up Abby from Daycare by 5pm and be on the road to MN.  We drove for about 2 hours, the kids were both sleeping so we waited to eat until 7:30. We finally stopped off past Eau Claire to eat and get back onto the road by 9pm. The kids slept the majority of the ways, which made things easier when traveling so far.

We reached St. Paul at 10:30pm, staying at Days Inn, just 3 miles from Fairview. Of course, we got the furthest room from the parking lot which means many trips from the van with baby supplies and suitcases. Everyone went to bed pretty easily, including mom and dad.

We had to be at the hospital by 9am to meet with Dr. Baker, the BMT doctor. He really explained their protocol in detail and answered our questions. We then met with Marie, BMT counselor, who informed us of services, housing, and gave us a tour of the BMT units. (Rick went on tour, I stayed with kids since I have a cold)

We grabbed lunch at noon and then headed over to Ronald McDonald House for a tour. It is pretty impressive with 80+ rooms for BMT families to stay in. Plus multiple toy rooms and activities for Abby to do while we are living there. Then Hayden filled his pants so we had to cut the visit short. I was excited to hear they have a dog that lives there, it is a Labradoodle, which is a not shedding dog!

We went back to our hotel room for a well needed nap for all of us. We are somewhat learning the area but still haven’t seen one flyer on tourism for MN. So we haven’t found the Mall of America, a shopping center or most important, a zoo. I have printed some directions out before hand, but MN fails at tourism in my book.

Tomorrow is Friday, hopefully we find more fun things to do. Hayden is doing really well and Abby is enjoying swimming and hanging out at the hotel!

kb