Happy Heart News

So just a heads up for everyone... this week will probably be a lot of medical talk. Hopefully a cute story or funny moment will happen along the way. But just so you know...

  Anyway, we received good news from the heart doctor today. For the third month in a row his heart has stayed the same. Thank you God!  Please oh please don't let it ever get any worse. I kinda feel a little free tonight because we don't have to go back for TWO WHOLE MONTHS!!!

That's right... I get a month off from getting that nervous, cranky feeling.  September is when we go back. It seems so far away right now. Jake will even get to go to his first U-T game before seeing the doc again. His jersey is ready to go.

 So tomorrow is the pediatrician... I've been at the kitchen table all night getting organized. 

List of Questions....                check

Notebook of assessments.... check

Suggested testing list.....        check

Good night sleep and smiling face ...        working on it

Health Matters

Jake's got several big appointments this week...so we need your prayers.
The first one is tomorrow at 10:30. It's his...dah..dah..duummm...Cardiologist. Let's just be honest. I hate these appointments.
They make me scared, worried and just plain cranky. I hate waiting around to see if things have gotten worse. The good news is nothing has changed in 2 months. Please pray that his heart has gotten stronger. I know my God who is bigger then Williams Syndrome has the power to make Jake's heart perfect.
Wednesday we go for his nine month checkup. I think they are doing some extra testing since it's his first visit since his diagnosis.
On top of that he has his first Occupational Therapy appointment Thursday along with his weekly E-I teacher visit. Then this morning his TEIS service manager called and wants to come by Friday.
Yep... I know.. lots of fun at the White house.
Since I don't have anything funny or witty to say... let's just end it like this... the one..the only...king of cuteness.

Scary Room

  Ever been freaked out while your suppose to be having a nice peaceful get-away? Let me tell you a little story.

The boys (Dave, Jake and Riley) and I went to Knoxville Thursday night to visit my sister. We ran around Friday... ate at the Tomato Head... shopped around Market Square and then capped the day off with a nice dinner with 15 family members at Litton's. If you've ever spent any quality time in K-town then you know it's a great place.  They have burgers the size of mars... the cookies are even bigger.

 Saturday morning I got my haircut at one of my favorite places and had lunch with the girls. During all this Dave and I decided at the last minute to spend Saturday night in the mountains and let my parents keep Jake for the night. Now remember this is all last minute. So we headed to the Smokies around 4:30 in search of a room. ALMOST EVERYONE WAS BOOKED.

We finally found a room at a place that will remain nameless. But here's the catch they only had a super suite available. After hours of looking...we just didn't care and took it. The guy on the phone was so surprised when I said we'd take it. I should of known then. 

OK.. brace yourself.   This is what we got.

This room was a thousand square feet. That closet looking thing to the left is actually a sauna.. there's the hot top and that couch faced a wall that had a movie screen that came down...see that projector hanging from the ceiling. Weird..huh? To the right was this..

a hallway and yes.... waaaaay down there next to the lamp was the bed.

The room was desolate, scary and hadn't been updated since the 80's.

Dave and I are self-confessed hotel/motel snobs. Like almost everyone I grew up staying at Holiday Inns and Best Westerns but somewhere along the way I learned to prefer more.

We stayed because it was clean and it was late.  I kept trying to keep Dave out later and later after dinner so we wouldn't have to go back to what we called the death room.  It just felt like something from a horror movie. I was seriously freaked out and even had Dave block the door with a chair in case Freddy or Jason decided to come in. Now we just laugh about it. 

So to sum it up... I learned a lesson. Always carry a DVD with you in case your room has a movie screen.

King of Cuteness

This post is mainly for one person...and you know who you are. (Her name starts with Meg and ends with an)

She is demanding more pictures of my cutie-pie.

So my Knoxville princess...heeeeeere's Jake!!

This is what we've been up to...playing with our new toy. We ride up the street and down the street.  In the kitchen and out of the living room.  Up to the barn and down to the house.  Jake's favorite game right now is to chase Riley in his car. The dog barks...and Jacob laughs. (and he looks so good doing it) 

We don't take a single smile for granted in this house because it took a long time for us to get our first smile. So, this picture is one of those I can't get enough of. I thought you might enjoy it to.

One quick note from last week. I finally called the doctor after never hearing test results from the ultrasound on his kidneys. Everything is fine. Whoooo-hooo!!

Eye See

     I am soooo not used to getting up and heading downtown anymore.  

 Jake had to be at Vandy Children's hospital by 8:30 this morning and it about killed me.

 He had two appointments.

 The first was to get his eyes checked. Yeah... another praise... his eyes are fine!!! The doctor didn't want to see us back till he's four. There are so many Williams syndrome kids that have lazy eyes or crossed eyes or even just bad vision. Right now we have none of that.

 The second appointment was at 10:00...for an ultrasound on his kidneys.   We don't know anything.... just waiting on word from our doctor. 

Once we got going it was a good day. We had lunch downtown with Dave and even hung out at the arena for a while before heading home. It kinda made me miss my old stomp'n grounds.

 But on the other hand.... how many days when I was downtown could I take an hour and half  nap in the middle of the day?

 

  

 

   

What A Week

Jake had three appointments this week. His early intervention teacher came Tuesday. He had an occupational therapy assessment Wednesday and today was an assessment for physical therapy.

  So how did he do? Well, here we go.

Wait! No. Let me show you something cute first before we get into the medical stuff.

This picture was taken on vacation. The tye-dye shirt is compliments of my mother-in-law.

So back to the results.

1. The E-I teacher says he's behind verbally. No surprise there. I'm OK with that.

2. The OT assessment went pretty good.  He's using his hands decently.. just not as much as he should. The therapist is going to ask TEIS for two sessions a week.

3. The PT assessment also went pretty good. Get this!! He score ABOVE his age in stability! I'm thrilled. Thank You Lord!! He is about two months behind in mobility but I can deal with that. All in all not bad results. 

The funniest thing.. Jake made quiet a first impression yesterday on the ladies at High Hopes. When I walked into today I heard things like "That must be Jacob.. I heard he was cute" and "He's cuter then they said". My favorite was the therapist so charmed by his sweetness that she offered to take him from the lady already working with him.

I told my mom about the lovin' he received and I'm pretty sure she's driving from East Tennessee to bring the ladies brownies and chicken salad sandwiches.

It's been an emotional week trying to take in every tip, suggestion and result. But as I sit here tonight watching my sweet little boy sleep... I feel nothing but blessed.  God is good.

Fourth With The Fam!!

We spent our long fourth of July weekend here.

Isn't it Bee-U-Tee-Ful!!

It's an area near my in-law's house. There was a big family reunion for a limb on Dave's side of the family tree.

I didn't know a lot of people but we had a great time. We played games like the shoe toss..yep you just flick the ol'shoe off your foot as far as you can. It's really lots of fun when you have about 25 people all standing in a row. Needless to say the Old Navy flip flops don't go very far.

Dave's Uncle Carlos also brought up an old corn grist mill and made fresh corn meal for everyone.

It was genuine and pure. I loved it.

The reunion was Thursday through Saturday.

We actually spent the fourth with some of my family members. That's where this great action shot was taken.

Yep...that's spit-up on my arm.

Jake let it flow just as the picture was taken.

Is it gross? Yeah.

Am I use to it? Yeah.

He is doing sooooo gooood!!!

I'm such a proud momma right  now.  Jake's Early Intervention teacher stopped by for the first time today. She assessed him on his cognitive skills... and he score in the 7-9 month range.

YEAH!!!! Since he's just eight months old this is great news.

 Also... the Jake-ster is getting much better at rolling from tummy to tush. Like I said earlier..he's doing sooooo good!