We met with a spina bifida coordinator today and started to get our DUX (good luck this weekend ZWHS) in a row as we'll need to be meeting with a pediatric neurosurgeon, orthopedist, urologist (Shawna thinks that should be for me too!!), physical therapist, etc. She also showed us two walls of an office of pictures of some of their spina bifida kiddos and the things they are doing as they grow up which was very cool to see (getting married, playing basketball, playing hockey, going to homecoming dances, just being normal kids/adults). Yes, we're still planning on having a child with disabilities but we're starting to be big believers that we all have disabilities and so will our next child and we all adapt and overcome and so will #3.
Obviously, by reading this you are realizing the that boys and I made it successfully (a very relative term) on our van journey this past weekend. I don't have any pics of the boys in the van 1. because that would mean that I was taking pics of them while driving (not that I haven't been guilty of that in the past) but doing that while driving in a near hurricane basically from Zeeland to the Ohio/Pennsylvania state line kept my focus, for the most part, on the road (not to mention switching DVD's and opening up at least 15 bags of fruit snacks, passing out suckers, graham crackers, donuts, or anything else less than healthy, while going through over a box of Capri Suns....and by the way, those stupid "juice bags" are hard enough to open as is, let alone trying to navigate through a tropical storm at 60mph). We made it to Somerset, Pennsylvania on Saturday night, leaving us another 3 hours or so Sunday morning before re-uniting with Mommy in Philly. The boys and I were pumped and fortunately, pretty well rested.
I can't put into words what a blessing the Ronald McDonald's House has been for us (and the thousands nationwide that benefit from what these places have to offer. As mentioned in previous blogs, every meal is provided by donations and every night a volunteer group comes in and cooks a meal for all of the residence (that is where I could talk about my, I'm sure of it, of at least 5-10 pounds...it's like Thanksgiving dinner every night...including toys and such for the kids that the groups bring in). So, a quick shoutout to the RMH's around the country and a reminder that anytime you eat at a McDonald's and there is that little change box by the drive-thru window or by the register, please put your extra change in there because these places that those boxes support are unbelievable. Or if you're looking to donate some of your time and/or resources, consider getting a group together and providing a meal at the RMH nearest to you. Just one chance to experience these places and you'll be hooked as we are.
We've also been able to meet some of the other residence here. Two of the spina bifida moms just had their CSections (37 weeks for both!!) and will be moving out in the next day or so. Amazingly, one of them had a baby with a very large lesion, much larger than ours, on it's back which usually means possible paralysis from the waist down and the baby is already moving it's toes!!! Not to get our hopes up, but you never know. And originally, they told her there was about a 90% chance the baby would need a shunt but it's now looking like that won't be needed.
One of the families here is from Curacao (small island just north of Venezuela). Justin, the son, is 14 and a gem of a kid. He's here on his second visit as his first tumor was on his brain and was taken care of but on this check up visit, they found another aggressive cancerous tumor in his chest so they're here trying to figure out what the next steps are. I have had the chance to chat with him a lot and dig into the life of a high school student from another country. Very interesting the differences in educational systems from where he is from (a Dutch territory) compared to ours. They head home this weekend.
A few other frequent fliers that we run into a lot are 2 little girls that get radiation/chemo everyday that are 3 and 4 years old. One is from Toronto and her mom and dad trade on and off being here with her every week as they have two older kids at home while the 4 year olds mom is from West Virginia and dad is from Maryland and they are both here and will be for 6 weeks.
There are big Halloween plans here which are no surprise as almost every night there is some organized event for entertainment (or during the day as Shawna snuck out on the boys and I while we were all napping on Monday and was quite pampered by a group of stylists who came in and did makeup and such for all of the moms here)...Monday night magic show, last night a group of dressed up dogs for the kids to pet and get candy from, music tonight, etc.
We did have visitor this week on Tuesday as our friend "Mr. TD" happened to have business in Philly so he was able to join us for dinner at the RMH and catch up with us. It was great to have TD hang out with the fam for a bit and appreciate all of his and his families support of us while we've been in Philly...Thanks DeRoo's.
Papa Bob and Grandma Sue are on their way out tomorrow morning for a long weekend. Hopefully the weather is great so we can get out and about outside around Philly as we've covered a lot of the indoor activities. We were able to go to the Please Touch Museum which was very cool for the boys to do all sorts of hands on stuff.
Week one of this two week rotation is about halfway over. It's gone by pretty quickly. It's fun being together as a fam and enjoying the last few weeks of our time out in Philly. With Hope hoops starting up and getting into the middle of the school year, there are definitely things we miss about being at home, but being with Mommy out in Philadelphia is definitely where we want to be. She's almost done but and intching to get home so any email, piece of mail she/we get out here givers her/us just a little ability to scratch that itch.CHOOSING JOY
-Jeff
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