Snow Day...

This is what we woke up to this morning...


We got up nice and early to get ready for "school" and after looking out the window, I decided that I should take a look at the school closings (didn't think I'd have to do that for awhile!) and sure enough...today was Grey's first (of many I'm sure) snow days! To be honest, as much as I loved snow days as a kid, I certainly don't love them as much now.


What?!?! No School?!?!?


We have our day down, I know when to give him breakfast, his nap, what time we need to leave to get to therapy on time. This not having to do anything threw a loop into my schedule, and for those that know me, you know that I NEED my schedule! :) Not to mention the fact that yesterday was the first good day we have had since we have started this new regimen of therapy. And by "good" I mean the first day that he didn't cry for over half of the time, the first day he actually smiled while we were doing some of his exercises, the first day that I didn't question myself and wonder if he was really ready for this. I think that there is a thin line between doing what is best for Grey and his PT and just letting him be a baby. I don't want to have to take my 9 month old to 2 hours of therapy a day, everyday. But I also don't want to waste this opportunity where he is learning so much and seems to be gaining some new abilities. I think that this will always be a struggle, a big struggle. We just continue to pray that God will show us the right path that we should take, the path that is best for all of us. Right now, I feel strongly that we are on the right path.

So...for what we have been doing at the CLC...The beginning of the day starts with "the lying program" the babies lay on a "table" and work different parts indivually, stretching their arms and legs, Moving one leg at a time, rolling from side to side. Grey can stand this for about 3 minutes, then he realizes that he can't go anywhere and decides that he'll just cry for the remainder of the lying program time. Although, like I said, yesterday he did very well. He didn't cry much during this and we were even laughing. Big improvement from the previous days. After the lying program we have an individual time where we work on 4 point crawling, kneeling, kneeling and reaching out with one hand, standing, and standing and reaching. He usually does pretty well during this time. We don't stay on one thing too long and I think that that helps. He is also working with his buddy Carson and I think he likes to see what he is up to. :) Once we are done with the individual part of class we (there are 4 kids) all come back and work on the parallel bars sitting and standing. They play games together going up and down, sitting with only one hand holding on to the bar, waving, standing with only one hand on the bar (Grey still needs a lot of help with the standing, but his upper body and core are very strong which is very encouraging. After this, it is time to LEAVE! hahaha I can honestly say that we are READY TO GO at this point. Grey is ready to get home, get some cuddles in and take a nap. :)

We also had our first parent teacher conference this week. It went very well. I was feeling a bit discouraged that Grey wasn't getting enough out of it, and I was worried that he wasn't ready, but they reassured me that now was the perfect time to start this. It's great for these kids to build off of each other and to start to take direction at a young age. They also assured me that they were happy to see him cry and let us know that he wasn't happy. That is what a 9 month old SHOULD be doing! :) They also noticed that Grey has much more active hip movement while he is standing and kneeling, to them, this is quite different to see, as most kids have more active movement while lying down where Grey has virtually none. We now know to work more with him in these upright positions. Well, I hope that I didn't completley overwhelm you all with this lengthy post, but I just wanted to try and give you an update on what has happened with us over this past week. Please continue to keep us in your prayers as we start again Monday. :)

The Conductive Learning Center...

I know that we have mentioned the Conductive Learning Center in a few other posts, but I thought that it was time to really explain what it was. Usually I take Grey there once a week for physical therapy...BUT...for the first three weeks in December we will be going there for 2 hours a day, 5 days a week. Yowza!! I'm a bit nervous to say the least, but Grey is learning so fast right now, and doing so well, that now is the perfect time! We give much credit to the CLC for all Grey has accomplished up to this point.

What Is Conductive Education?
Conductive education is an intensive, multi-disciplinary approach to education, training and development for individuals with cerebral palsy, spina bifida and other motor challenges.
Developed in 1945 in Hungary by Dr. Andras Peto, conductive education is based on the theory that the central nervous system has the capacity to form new neural connections, despite neurological damage. By repeating tasks and integrating intentional movement with learning, the brain creates alternate paths to send messages to muscle groups, creating the desired movements. Through this, a child can gain movement and skills, and achieve greater levels of independence. The critical element of conductive education is the integration of motor-skill development with cognitive and emotional-skill development within a group setting. Most children with motor challenges do not learn exactly the same way as their peers. Conductive education helps these students build their cognitive skills and helps them learn to use alternate strategies to learn. This total approach to learning and training targets children under the age of six, when the potential for impact is greatest, and when they can be prepared for the traditional classroom.
We feel so blessed to live in Grand Rapids because the Conductive Learning Center in Grand Rapids operates the only program in North America that is directed and supervised by the International Peto Institute of Conductive Education in Budapest, Hungary. Program Director Andrea Benyovszky has been the Peto- assigned conductor for the past four years. She coordinates the scheduling of the additional Peto Institute conductors, who travel to Grand Rapids to deliver the conductive education program.

Wow...that was a lot of info to take in, but I hope that you get the idea! :) Here is the latest video that they made for their annual dinner/fundraiser (take note of the cutie in the superman t shirt!)


Here are some photos of what we work on while we are there...

Right now Grey doesn't bear much weight, we are working on getting him to stand with his knees straight


We also work on kneeling: going from low kneeling to high kneeling he is getting pretty good at this!!



again, kneeling can't practice too much. :)


We also work on sitting with a straight back and feet planted on the floor. As he moves, this puts pressure and weight on his feet


There are many other things that we are working on that I just don't have pictures of, I just wanted to give you a little glimpse into our day there. Please keep us in your prayers these next 3 weeks, pray that Grey (and mom) can handle 2 hours a day, and that he learns a lot and above all else, has fun while he is doing it!! :)

Love to all,
Leigh, Andy and Greyson

Very Thankful

Ahhh, Thanksgiving Day. I've always loved this holiday, but admittedly most of my life I've loved it for the "wrong" reasons. Just a day that you don't have to work, eat way too much food, take a nap mid-way through the third quarter, wake up and watch the lions get beat...again, spend some time with the family, some of which you only see a couple times a year so you stumble thru a few awkward conversations to get by, and then say goodbye till the next year. Sure I would spend a few moments thinking about how thankful I was for everything I had, and how grateful I was for where I was at that moment. But I missed the idea.

Things changed this year.

It started last Thanksgiving...I remember it quite well. Leigh and I were a couple months into our new reality, and we were becoming more positive about the whole situation but thanksgiving day came...and I felt like, "how could I be thankful for what's happening to us." There were still dark days that popped up at that time, and that day, a day where people stop and reflect on how thankful they were, was one of them for me. I hated what happened to my boy and could not get over it to see the amazing things that were beginning in our lives.

Cut to this year...

This is without a doubt, the year in which I have never been more thankful. I'm not sure I could hit all of them so i'll just start a list in no particular order.

*Greyson. I said no particular order but maybe this one is too obvious. :) He's changed me in so many ways and has enriched the lives of so many people. WE think he's got a knack for inspiring others, and are thankful that God gave us this baby boy!

*Family. WE've grown so much closer to our family this past year and don;t know what we'd do without them. There support continues everyday.

*Church. Funny how when life body slams you and your ready to tap out, a timely message from church can help pull you back up. That's exactly what happened last year with us, and because pastor Jeff was "speaking directly to us" every sunday, we gained hope and were re focused on him and his Word. Closely related to this one is our small group. A few years ago were were somewhat hesitantly thrown together in to a small group at random...little did we know they'd become dear friends and a crucial support system for us. We love you guys :)

*SB support Groups. Leigh's really the expert at this one, but let me tell you the family's she's "met" seem to all be on the same wave length. They all want the best for their kids and want to see other kids with SB prosper. It's amazing to me the support and encouragement I see on these online forums. These sites gave Leigh and I a real life view of what life was like as a parent with a child with SB and they made it seem "doable". It makes me proud to see Leigh exchange the kindness we received as she now selflessly will answer any SB related question that any new mom has. Another related support group that we are incredibly thankful for are our friends Nate, Emily and their son Carson. Seriously three days after we found out about Greyson we found out "through the grape vine" that another couple were in the exact same situation...and get this, they lived one street over from us. I can literally chuck a rock and I might be able to hit their house (I wouldn;t do that of course, It might ding up the new siding Nates's putting up on his house :) hehehe ) Anyway, to be able to talk with them and have them understand EXACTLY what we were going through... I will forever be thankful. And today our friendship has grown, (just like our boys, arghh their getting big) and will continue to strengthen as we will always have them to forge ahead on this journey.

*micro brew :)

*Leigh. O man, I could write a novel about how she is the best mom for Greyson, and not only that, shes the best wife for me :)

*A job. I have one these days, and I like it, and I'm good at it, and I get paid. :)

*Greyson. Oh wait did I mention him already? :) hehehe. But seriously, I'm thankful for his determination, his laugh, the space between his 2 front teeth, the way he crawls, his curiosity, his love of cheerios and every other food for that matter, his keen sense of hearing, the way he sleeps with his arms outstretched and his blanket over part of his face, the way he says mama and dada, the way he wiggles his fingers when he sees something that excites him...and I could go on.

So this year was different and that deep sense of thankfulness was really there inside me. and I'm thankful for that.


Love to all,

Andy, Leigh, Greyson



PS


heres a few pics of Grey's first thanksgiving. He liked it. :)


Getting into the football game!

"ARGHHH the Lions are horrible...I'm hungry, lets eat."

"Ok, I'll try some mashed potatoes."
"Yeah these look good."
"I'll just try a little"

Diggin IN!

Yummy!

Livin it up in Livonia

This past weekend Leigh and I had a chance to head to the East side of the state for our first Spina Bifida Conference. Seems like a funny thing to be excited about, but I was kind of excited to hear what was to be said there and admittedly Leigh and I considered it a "vacation" as we left Grey home with Grandma Neal. (thanks Chris :) ) We rode down with Nate and Emily (Carson's mom and dad, If you missed last post, Carson is Grey's buddy and Olympic swim partner) on friday, and were able to enjoy a really nice evening with them.

So saturday morning comes and we had this brilliant idea that we would finally be able to SLEEP IN!!! We'll sure enough 6 thirty hits and guess who's up-and-at-em? Yep, So much for sleeping in. Oh well, it was still really nice to just lounge a bit. So anyway we head down to the conference, and at this point we really weren't sure what it was gonna be all about, we had never attended anything like this before, but heard from other parents that this was a good one to check out. The first thing that struck me was the amount of kids using canes, walkers, wheel chairs, it was great to see! Great to see because it is sooo rare in our day-to-day lives to see a child that needs a little extra help getting around. Leigh and I are always like, "where are they?" And when we do see one it's like "you think he/she has spina bifida?" So anyway, to see a large number of children like this was pretty cool. And with the large number of kids that were there was an even larger collective smile from them all! Everyone was very kind and had a general warmth about them.

As far as the actual conference was concerned I was VERY impressed with the speakers, (mainly Doctors from Detroit Children's Hospital) and learned a lot of interesting things. Some of the age appropriate stuff didn't directly relate to Grey, therefore my attention drifted as it does in any sort of "lecture type-situation" But overall, I was pretty attentive and even jotted a few notes down for future use.

I mentioned before how key it was for me to see kids with spina bifida getting around, laughing, interacting, playing with others. It also was encouraging to see and speak with adults living with spina bifida to cast some sort of light on what Grey's future might look like as an adult. For example, The four of us had lunch with a women named Katie, probably around my age, who was born with SB. She spoke with us about how her folks never went easy on her, but expected just the same from her as her brothers and sisters. She said she had a normal childhood, was on the swimming team for 4 years in high school, told us how she met her husband 5 year ago and introduced us to her daughter who was 3. Other adults included teachers, mentors, businessmen, etc. you know, like jobs that everyone else has. It's been a weakness of mine thinking about Grey's future and doubting/limiting what he might be able to do because of SB, but this weekend sure helped to rattle some of those thoughts outta my head and trust that Grey will do what he's meant to do. and that will be good enough. always.

love Andy, Leigh, Grey

Swim Class

For the past 4 weeks, Leigh has been "swimming" with Grey at Swim Class. When Leigh signed him up for these classes I thought it be fun for both of them, and especially for Grey. Swimming is a wonderful activity for anyone, but we've researched aqua therapy and can be a great form of Physical therapy for SB kids. However, this class wasn't part of therapy, but rather just a beginning swim class for babies held at a local fitness center. Nevertheless, if it got Grey to use his hips and legs a little more, than it be totally worth it!

I remember after the second or third class I asked Leigh if she told the instructor about Grey. It's still kind of a funny/awkward/weird conversation to bring up to someone that has never met Grey before. And to be honest the topic doesn't come up that often at the moment, because at nine months (arghhhh he's already 9 months) Grey looks and acts like any other typical baby. But I have a habit of getting ahead of myself and look to the future. The comments will come up, I know they will. I guess it's how we respond to them that will be crucial, and how we teach Grey to be confident in himself and be able to answer any ignorant question that may come his way. Anyway, where was I going with this... Oh yes, Leigh was in the pool with Grey doing their thing when the instructor comes up to the both of them and says,
"Come on Grey kick your kickers!"
I guess Leigh thought that was the best time to bring up the topic :) haha
And she simply responded by explaining that "Yeah, about his kickers... He might not be so good at that part of swimming, you see he has Spina Bifida and his legs aren't as strong." The instructor responded almost too gleefly, "OH OK, Great. That's fine." like she had no idea what Leigh was talking about. haha. But, really can't blame her. A little more than a year ago we wouldn't have had any idea what spina bifida really was. So I guess this is where we start learning how to perfect our delivery, how we inform others and build up people like Grey at the same time.

Back to the whole swimming thing...Grey's not a huge fan of going under water yet, Leigh informs me he's getting better at it so I had to see for myself. Last week I scooted out of work for a while and brought a camera. I'm pretty sure I embarrassed Leigh big time as a walk in from the locker room, winter jacket on, glasses all steamed up, holding a giant camera and lens from work. haha. But oh well, I got a few good pics of our little mer-man!


Grey deosn't always like to "reach and pull" :)

Grey training for the 2028 Olympics! Oh and look there's his relay partner Carson to the right!


love Andy, Leigh and Grey

Grey...The Ferocious Fire-Breathin Dragon

It's been a while since I've been this excited for Halloween. Yeah I had some really great Trick or treat experiences growing up, but it's a whole new ballgame when you've got your own tiny trick-or-treatster on your hand. It all starts with the costume and trust me Leigh and i had to make some hard decisions when it came to Grey's final costume. Do we drop like 50-60 bucks on an elephant costume or hold out and see what else is out there? Luckily we stood our ground and Leigh happened across the Fire Breathin Dragon costume at Old Navy for a fraction of the price and a ton better than any elephant costume out there!! I've heard horror stories of kids throwin fits and freaking out when the get into their costumes (I was one of them), and was wondering how'd grey react to wearing his oversized dragon costume. Turns out he loved it!!! and if it was up to him, he'd still be wearing it :)

So here's how the big day went down.

first, it was time to get into the costume.

"Ok mom and dad, I'm ready to go!"

Quick picture with mommy, shows off my whole costume pretty well.

Outside for a family picture.

and another one.

Finally, my first trick or treat spot!



Scary family.

"wait, I thought I was the only Ferocious Fire Breathin Dragon out there! Nope, his buddy Carson was also a Ferocious Dragon :)"

So yeah, We all had a really fun day going around showin off the G-man in his costume. He certainly didn't shy way from the attention...or the candy :)

Hope everyone had a Happy Halloween!

Gibbs'

"Colors Here, Colors There, Lots of Colors Everywhere!"

That's just grey playing his winnie the pooh piano. He loves it and we have all the songs fully en-grained in our heads. :) One of those tunes happens to be about colors, speaking of colors it's fall in Michigan and the colors are pretty incredible. We took advantage and had a little Fall Photo shoot this past weekend. Here's a few of our favorites.


Just standing in our driveway is pretty amazing.



Grey being grey.




This family shot pretty much sums up our family! love it!




"uh dad...what you lookin at"





love the Gibbs'