A couple of Busy but also Fun Days )

Yesterday the boys had their 'End of Year' School Pizza Party at the Cottage School that included a State Report and a State Song. I have to tell you that Connor and Alexander have been hard at work learning about the State they had picked: New York. I was and still are so proud at how much effort they put into this and the biggest challenge came in the fact that their speech could only be 20 seconds per person, so at least my dumplings had the advantage of 40 seconds :)
The afternoon at school was magical in many ways. For one they got to see their favorite teacher outside our home, Mrs. Strubble, but they also got to play with some of their school friends during recess and during their Pizza lunch. Interestingly as well was the part of bringing snack foods from the State you are talking about so we brought Milk (first Processing Plant was opened in NY in 1861) and we brought Potato Chips because our research told us that the first Potato Chip was made in NY. Who would have known? I know I did not so I am once again getting a learning experience along with our boys :)

The only sad part on Wednesday for Connor was the fact that he had a splitting headache all day but he really only let it show after school was out. He laid down most of the evening holding his head and feeling miserable. I am not sure if it could be a reaction to the latest IVIG since it was two days later. I know I heard that sever headaches are a side effect if the infusion was to fast but I am not sure about the timeline to the infusion.

Today, Connor had Hippo Therapy again and he got treated to riding a new horse. Her name is Reno and she is not the most liked Horse by some of the Handlers and Walkers. I was told that she can be moody and bratty but Connor's Therapist Amanda says she likes her because she is spirited, has spunk, has a very smooth gait and is a bit more challenging to handle and rein command. Amanda feels that Connor is at a point where he has excellent balance but needs to learn to focus a bit more. He had an easy time moving his previous gentle horses like Blinkers and Star but Reno is truly in a different category :)
I have to say at the end of the session Miss Amanda was very happy with the way Connor handled her but I have to admit that for the walkers she was not an easy horse at all. At first little Miss Reno took a bite into the lead walkers shoulder after just 5 minutes and she threw back her head which made Connor jump, she then tried to bite the walkers face after about 20 minutes and that was the point when the owner of the Center stepped in and took over. As it stands Connor did like riding her and will have her again next week as long as Reno does not hurt herself. I talked to one of the walkers and I guess Reno has been there for a long time but due to injuries she causes to herself or getting into fights with other horses leaves her out in sick time more often then her being in Therapy. I love how much I get to learn about horses and their little quirks and characters. I think each horse Connor has been able to ride made us fall in love with them.
So then we left Edwards, CO, behind at 3 pm at 55'F to head back home and we encountered the craziest snow and freezing rain weather going up the Mountains. Of course all the snow and Ice was around Woodland Park and Divide and by the time we pulled up 'our' Mountain there was the sunshine again.

There are some good news on some of our JDM Babies. One of them woke up from a coma and might possibly be released in 5 days, for the other child the cause of the infection is found but now there needs to be a Antibiotic that will work and fight the infection, Bacteria and Staff Infection. There is another child who suffered a Stroke at just 12 years old during a surgery to place the medi port. So while our decease might be rare there are so many of our numbers who are in pain, and of course the families heartbreak.
Connor also found out at school on Wednesday that one of his favorite school friends young cousin lost his fight to Cancer.
The numbers of kids dying are staggering and I know that there can not be many people that have not been affected by this in one form or another. Ether up close and personal or through friends. If you ever look for something that deserves your attention or you are looking for a cause to support, or a cause to recommend to help a fundraiser at your kids school PLEASE consider focusing on Diseases that kill our children. I truly believe there is no bigger pain in this world then loosing your child, so even if we have not lost ours, we easily could be one of the numbers and how would we feel if those around us would say they are sorry but would not make an effort to change this?

I told many of you that when the time came and I have a need I would tell you what you can do to help Connor. Here it is, for Connor, for us, pick a cause that involves children and help that cause. It does not have to be money! Just talking about it and bringing attention to it at school, at work, with friends ... I really think eventually our voices would be heard. Of course I am selfish :) so if you have no cause close to your heart then CureJM.org would be one I could easily suggest. It could after all safe Connor's life down the road or one of his friends. I know you all have the power because you already proven it to me by getting us that win with Pepsi :)

THANK YOU for always caring and always listening!

Hugs,

R A C A