Well, we figured out we're going to need about $5000 for the whole family to go, either by barrowing my mom's van or going by train. Ugh ... that is a lot of money to have to raise. We tried to get free air travel from a charity that donates airplane travel, but they couldn't help us because it was to long of a trip. I have also contacted Magic Foundation (three times!) but haven't heard anything back on scholarships for the conference.
We really hope that the whole family can go, it's just as important for my husband to be able to absorb the information as it is for me. We are both really involved in the kids care. They have special times too for the kids, not only to meet with other kids like them, but for the other kids to talk to other siblings of the kids with the medical issues.
I have to be honest, I'm not sure that being able to raise the money this year is going to happen. We may just have to keep raising money through the year and be resigned to not going until next year. I sure hope not.
In good news though - we got our FIRST and SECOND donations this week!! So maybe there is hope!! Still have a LONG way to go but YAY!!
My "Aunt" of sorts, back in Wisconsin decided to hold an ebay auction for an ADORABLE Pottery-Barn bedding set, a tye-dyed pink butterfly crib set ... it ended the other day...
And we got our first donation through pay-pal!! Jocelyn, a blog reader, who is currently working on her PhD in a lab that studies intellectual disability and neurodegenerative disorders, donated $10!! Thank you soooooo much Jocelyn!! It means a lot!! I actually did a double take when I saw the email! Ha!
I can't even begin to express how important this is to us!
If you are visiting for the first time, let me tell you a little something about my boys.
The results of my 20 week Ultrasound showed he had a "cyst" in his brain. He also had a 2 vessel cord and severe IUGR.... having already been through the "tiny baby" experience with Noah, I was scared, but I knew some of what might be expected. No one told us that Nathan wouldn't make it like I was told with Noah. However, from what I read, I knew it was a possibility ... again. Through the last 4 years Nathan has progressed. We found out he has a rare type of primordial dwarfism called Russell Silver Syndrome. It causes a lot of issues, and we found out that all of his medical issues can be attributed to it. From his thyroid issues, to his cleft palate ... from his slow weight gain and poor growth... to the way he looks and his Autism. He has already been through a lot in his short 4 years, including several surgeries and tests that he didn't like one bit. He just turned 4 years old, and he (to put it in perspective) is 22lbs and 35 inches. He wears size 24 month clothes, and depending on what it is, he could go smaller. For example, he could wear size 12 month shorts..... if he WORE shorts. However I have to fight with him to get any sort of short sleeves or short pants on him. If he doesn't have long sleeves and pants, he freaks out. Nathan doesn't talk much, it's very hard for us to understand him.... he has words, but even his clear words we sometimes have to try to figure out. It's frustrating for both him and us to communicate. We've tried sign language but it takes him forever to get a sign. I think, though, now... he might do a little better. So we might try again. With his Autism and Sensory Issues, I would love to get him Sensory toys, but some of them are so expensive. I want to get him into gymnastics because he would do wonderful and is so flexible due to his low muscle tone, but we can't afford it right now. And now, seeing him on a horse for the first time a few days ago... I would love to get him therapeutic riding lessons. But we struggle paying our rent and getting food on the table right now let alone afford any of these, or getting to a conference that offers us a wealth of knowledge and meeting the Doctor who knows most about Russell Silver Syndrome... We have no idea what the future hold for Nathan... and I worry, a lot... but I love spending time with him, getting his little arms thrown around my neck and his silly kisses or pretending to eat my cheek because he's hungry... He is an amazing gift ...
Noah is most definitely my Drama King. He is so sensitive, both emotionally and physically. When I was pregnant with him, there was definitely something wrong. After an amnio, we found out that he has a rare genetic disorder called Mosaic Trisomy 16. I was told he would die before birth, or shortly after - and if I brought him home - by whatever miracle - that he would be so mentally and physically delayed that "it wouldn't be worth it" and it was highly suggested that I "interrupt" my pregnancy with him. In my head, I thought, "but I'm not 24 weeks yet, if you interrupt it now, then .... ooooooooh" and I understood in that moment that he was suggesting that I kill my baby ... and I flat out told him no. I told him I would take whatever time God wanted me to have with the baby. 9 years later, you wouldn't know anything was wrong at first glance. He acts like every other normal kid, however he's small for his age. Always one of the shortest kids in class, and he has a hard time understanding things. Recently he was diagnosed with Dyslexia, he's in 3rd Grade but at a 1st Grade learning level. He almost died on us in 2007. It took me several days before I got a DR to listen to me that something was wrong and it wasn't just a virus. Sure enough, he had started to go into kidney failure, and even though they have healed themselves now, it is something that we will always have to watch. He is constantly spilled blood out into his urine from his kidneys. Noah may not have RSS, but he is small for his age and that is something this conference also covers.
And I realize that it's time for me to update Noah & Nathan's stories above ...
Thank you both for the donations!! Again - it means a lot to us!!
