Updates, Updates, And More Updates!

Oh my it's been a long time since I've updated. So sorry! We had been traveling for Wegmans, then Joshua was sick, then I was sick, then Joshua was sick, then I was sick...do you see a pattern forming here? :) So here's a very brief update on what's been going on with Josh.

The last time I updated, we were just about to travel down to Virginia. That trip went well (except for Joshua not sleeping at. all. each. night.) and it was wonderful to see our friends. While Ben spent his days on the job site, Joshua and I spent the time with Kristen, Savannah, Niki, Tristan & Ethan. I was enjoying the time we had together too much to actually take pictures though!

The week after we came back from VA, we were off to PA for another site visit. This time we stayed a little longer and got to see more of our friends. We got to catch up with the Nadelhoffers, and Matthewand Nataliewere a source of nonstop entertainment for Joshua (who was a little cranky since he was not sleeping at. all. each. night) and there were even some kisses thrown in toward the end. We also got to spend some time with my friend, Erin, and her new baby, Evan. I moved to PA with Erin after college, so I guess in a way, it's because of her that I have my husband and my beautiful little boy! Yay for Erin! :) Evan slept the whole time we were there with Erin, but we got to hold him most of the time and it was so hard to let him go! Holding Evan brought back so many memories of when Joshua was that little (and light!) and both Ben and I left the house thinking that maybe another baby in the near future wouldn't be that bad. Then we slapped ourselves and got back to reality. :) Joshua had a great time with Erin. He was held and loved on and he even got to inspect Erin's ring. He decided that everything was in order and we headed off to our next visit. :) We spent Friday night with our friends, Tori and Jay, and their son, Max. Max is a ham. The hammiest ham there ever was. He is a complete riot. Ben, Joshua and I met Tori and Max at Valley Forge Park for a quick walk before dinner. It was a beautiful day and perfect for walking with the kids. Saturday morning we were up early (because Joshua hadn't slept at. all. all. night.) and headed for home. It was wonderful seeing our friends, but it was wonderful to get home and relax as well. Joshua drove for a little while on the way home because daddy and mommy were sooo tired (because Joshua did. not. sleep.). Just kidding...we were in a rest stop. But I love that picture!

On March 12, we had an appointment with the developmental pediatrician again. They formally diagnosed Joshua with spastic quadriplegic cerebral palsy. This is a good thing. We knew it was coming, we knew that it would happen. Having a formal diagnosis for him gives us the opportunity to get whatever services we need because of that diagnosis. I was surprised that I didn't feel sad or depressed because of the diagnosis. I realized it was because they are just words. Words do not change how I view my son. Spastic quad CP does not change who Joshua is or what he can do. It just gives us more opportunity to get him help and help him function at the highest capacity he can.
While we're on the topic of diagnoses, I wanted to update you on what is going on with my brother-in-law, Jay. Jodi and Jay saw a specialist at UNC on Monday. The specialist feels that Jay does have multiple sclerosis and they are now beginning treatment for MS. As shocking as it is to get this diagnosis, both Jodi and Jay are holding up quite well. They have decided to reinlist in the Army, and Jay's unit is making accomodations for him so that he can stay with them. What this means for their future is anyone's guess, but I know that they'll handle it together and roll with the punches. So just continue to pray for them. But just like Joshua, the diagnosis is just words. It doesn't change who Jay is or what he can do.

Ok...can I be honest for a minute? As I've said multiple times on this blog, we don't know why God allows the things he allows. We don't know the reason behind so many things, but when we can look back at the event that have shaped our lives, we see the reason. When I moved to PA with Erin in 2001, I was in a pretty miserable place in my life. I loved living with Erin, but I was lonely and searching for something. I thought about moving back home, but it never worked out. Then I met Ben. And I saw why I was in PA. So back to the part about me being honest...I believe that God will use Jay's MS to help Joshua. Or maybe God is going to use Joshua's CP to help Jay. I believe that Joshua and his Tio Jay are going to have a very special bond. Oh, they'll love each other because they are related and all that...but they are going to understand each other like no one else will understand them. They will understand how frustrating it can be when your body just won't do what you want it to do. And honestly, I'm glad Joshua will have someone to understand. And I'm glad that Joshua will have someone to look up to and know that if Tio can do it, so can he. That nothing is impossible once you put your mind to it. And I'm glad that Jay will have that in Joshua as well.

Happy St. Patrick's Day!

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Call To Prayer...

This post isn't about Joshua...wait! Don't stop reading! Sheesh...you Joshua followers are hardcore. I'll post some pictures at the end to entice you to keep reading. Will that work? Good. :)

So as I was saying, this post isn't about Joshua. It's a request for you to pray. Joshua's Tio Jay and Auntie Jodi need some serious support and love and I know that even though many of you don't know them personally, you will pray for them like you did for Joshua. Jay came back from Afghanistan in January after developing Bell's Palsy while he was there. Once he got back, things started to get much, much worse and he was diagnosed with ADEM. ADEM mimics the symptoms of multiple sclerosis, but is a one time event. Following the treatment for ADEM, he was treated with steriods and seemed to get better. Since then, he's gotten worse and gotten better a few times, but this time the doctors are now saying that they believe that the ADEM kickstarted true MS. So now they believe that Jay has MS. This is a devistating diagnosis for him. Of course there is always the possibility that the doctors are wrong and it's something else entirely, but it doesn't look promising. So our request is that you pray for Jay and Jodi.

Jodi and Jay, while I was writing this, I remembered my feelings as I wrote to tell everyone about Joshua's diagnosis. Here's what I said,

"...we know that our God is bigger than we could ever imagine and that He can heal Joshua with a word if it is His will. If it isn't in His will to heal our son completely, He will give us the means to deal with it. We know that He loves Joshua even more than we do (which is so hard to imagine!), and we trust that His plan is perfect and that before Joshua was even a thought God knew that we would face this and has given us the experience and the strength to deal with it. NOTHING happens without God's permission and this is no exception. We don't understand why it's happening to our baby, but we have no doubt that there is a reason and that God is in control."

We feel the same way now as we hear Jay's diagnosis. We don't know why this is happening to you or how it will turn out, but we know that God is with you as He was with us while we were dealing with a devistating diagnosis. While it may not help you as much as it helped me, I'm going to share with you my 'encouragement' songs. The first song always seemed to come on the radio when I was on my way to see Joshua in the hospital. I sang it everyday. It still always seems to come on when I'm having an especially hard day. Jo & Jay, we love you. I wish we could be closer so that we could help you more. For now, just know that our love is with you and, more importantly, so are our prayers.

As promised, here are the pictures for you Joshua fans. Thanks for sticking with me till the end. :)

New Toys!

I got a new toy on Tuesday. It's a new camera! A Nikon D60 to be more specific. Needless to say, I've had it attached to me for the past 48 hours. Oh how I wish you could see the pictures full size. They're really amazing. You can see Joshua's tastebuds! Each little eyelash! All the fibers in the carpet! The veins in the flower petals! And best of all, when I ask it to take a picture, it doesn't even have to think about it. It just does it! I can't wait to take this thing to Paris! :)

Joshua also got a new toy. Auntie Jodi and Tio Jay sent him a tummy time mat that is supposed to help strengthen his arms and back. It's a play mat with a water feature! That sounds strange, doesn't it? Here...let me show you... When he gets tired of playing, it doubles as a pillow! :) He really liked playing on it. He smiled nonstop! Of course, having the camera out all the time helps bring out the smiles too. :)

And the camera is really out all the time now. This morning, I couldn't resist getting a few shots of him fresh out of the shower...

The wrinkles! I just want to eat those wrinkly toes up. That's what new cameras do...make you want to eat baby toes. :)

Hip, Hip, Hooray for Cookies!

Happy belated Valentine's Day to all of Joshua's valentines! There has been lots going on in Joshua's world! A few weeks ago, we traveled to Fayetteville, North Carolina to see Auntie Jodi and Tio Jay. Joshua was wonderful on all the flights, usually falling asleep shortly after take off. Auntie Jodi got lots of snuggles and she was nice enough to share Joshua with Tio too! :)Joshua had a great time visiting with Auntie Jodi and Tio Jay. Of course, because Josh was in a new place, away from his bed and had not slept more than two hours at a time for many, many, way too many nights, it wasn't all rainbows and sunshine...but the tears were few and far between and there were plenty of smiles afterwards.

On Valentine's Day, we went down to Addison, NY (near Corning) to visit Chris, my mom's best friend. Joshua got to spend some quality time with Nana and Chris while Ben and I drove to Corning to wander around the town. We didn't last for long though...it was COLD! So we drove back to Chris' house and watched Joshua play with Tucker. This was Joshua's first experience with something so large, but he loved it. He loved to watch Tucker walk around the house. Maybe there will be a doggie in our future. Way, way, way in the future. :)

Joshua's newest and biggest accomplishment came in the form of a cookie. Josh's therapist brought over some Arrowroot biscuits (cookies) because she thought that Josh might be able to hold them and would like to chew on them. And he did!

I was in complete shock! He held the cookie, he chewed on it, he processed the large pieces that came off! This is HUGE for Joshua. He has an aversion to putting anything near or in his mouth. Oh, he'll put his hands or your hands in his mouth, and a pacifier of course, but he gets a little squeemish when it comes to anything else. Even spoons, spoons with food on them, are kind of iffy sometimes. So to have him hold the cookie first off...wow. What an accomplishment! But then to put the cookie into his mouth and chew on it?! Holy moly! Hip, hip, hooray for cookies!!!!

Josh has also started to make some progress in the language department. He's not saying any words yet, but he'll mimic sounds and tone. It's hard to get a video of him because whenever he sees the camera, he poses. Like this...

(Notice the red rimmed eyes? That's because he was SCREAMING 2.5 seconds earlier. The camera came out and so did the smiles. Am I a bad mom for pulling the camera out just to stop the crying? :))

So back to Joshua talking...I did get a couple videos of him "talking"...check them out. :)

So that's all for now. We're leaving for Virginia tomorrow. Ben is going down to visit a building site and Josh and I are tagging along so we can visit our friends. I'll let you know how it went when we get back!

Love,
us

Mark Your Calendars!

May 17, 2009.

That's a pretty special date, my friends. Why is it a special date? Because it is the date of the first ever Rochester CMV Walk N Rollathon! I've been helping organize the walk here in Rochester and I'm really excited about it. There are other walks scheduled in Minneapolis, Atlanta, Tucson, Houston, Long Island, Omaha, Detroit, Iowa City, Indianapolis, Idaho, and Raleigh/Durham that will all be raising money for the Brendan B. McGinnis Congenital CMV Foundation (website HERE). The Foundation will be giving some of the money to research to help find a vaccine and some will be put into their public awareness campaign.

I'll give you more details as we get closer to the date. Ahh, May...the trees will be in bloom, the flowers will be up, hopefully there won't be any snow! If you already know that you're interested in participating, leave a comment or email me or get in touch with me somehow so that I can send you more information.

The First Kitchen Update (aka Why I Love Craigslist)

Since we moved in I've been lamenting the lack of a dishwasher. It is one of the basics of a kitchen, after all. However, in order to get a standard dishwasher, we'd have to give up two cupboards and two drawers...and that is precious space in our kitchen! After all, we only have three full size cupboards and three full size drawers. The other two cupboards and drawers are 8" miniatures.

One day as I was perusing Craigslist, I found a dishwasher that would actually work for us. It's only 18" wide! So we bought it, brought it home and gazed lovingly at it for a week. This past weekend, Ben decided it was time to install it. Yippee! Ben cut out an 8" cupboard & drawer, reframed the space and hooked up the plumbing. Joshua watched with great interest. He LOVED the sound of the sawzall and all the hammering. So without further adieu....this is what my kitchen looks like now!Oh my gosh...isn't it beautiful?! It works perfectly too! I've never been so excited to do dishes. :)

First project down...many, many, many more to go. Isn't owning a home fun?!