Saturday, May 30, 2009

Chase's New Hot Rod

I would like to introduce you tooooo.......Chase's very own, Ottobock the hottest colors you'll be seeing on runways in Milan this year, cool gray (the new black) with a splash of racing orange. Notice the detailing in the design, the wearabilty for the everyday toddler...

We are really in love with the indoor base. You can adjust it to any height, and it takes up so much LESS space than the regular wheeled base. it's more like a computer chair base would be, and he still gets the posture support. He sat at Dave's computer last night and watched Elmo videos for the first time. (The indoor base will stay at home all the time, the outdoor base travels wherever we go.)

Normally the sun cover will stay in the van, but we had to show it off, and he was having a great time playing under it!

This gives you a better view of the indoor base...

We also got the plans from the architect this week and are now getting in contact with contractors for bids.

I got a call from Johns Hopkins yesterday, Friday, the Medical Director went over his records and said if Chase were his child he would take him to the Kennedy Krieger Institute which is on the same campus, and seems to be the "Brain center" there. I had an hour long conversation with them yesterday. Our records are now going to Dr. Hoon who Chase will be seeing there, and he will decide any other doctors he wants Chase to see. We should know when we're going no later than Wednesday. (((FYI for anyone interested: Dr. Hoon is the Director of the Phelps Center for Cerebral Palsy and Neurodevelopmental Medicine at the Kennedy Krieger Institute. He is also Medical Director of the Carter Center for Holoprosencephaly and Related Disorders at Johns Hopkins and Kennedy Krieger Institute, and is an attending physician at Kennedy Krieger Children’s Hospital and Johns Hopkins Children’s Center.)))

Chase's titers for EBV (mono) came back positive, which means he has it, but doesn't mean he has it now. Frustrating huh? It MIGHT mean he was just getting over it. But it might not. He still isn't himself. He is still having late night choking episodes because he's having such heavy build up in his lungs and has such a hard time clearing it himself.

Well I'm off to a Saturday morning MRI. I'm holding off neck surgery for at least a year, they have a new procedure that isn't FDA approved yet but I am SO willing to wait for! They will be able to put artificial discs in instead of more fusing and titanium plates! I won't lose any more movement! I was like, Heck yeah I can wait!

Gotta run, have a great weekend!!!!!

Tuesday, May 26, 2009

A few Bits of News

Johns Hopkins called, I have already scanned all of Chase's records and sent them, they are in the hands of the Medical Director at The Johns Hopkins Hospital in Baltimore. Now we're scared. It will be similar to our trip to the Children's Hospital of Philadelphia when I was pregnant with Trey. You go for a day and spend the whole day seeing multiple specialists, having tests, etc.

Chase will see a Neurologist for sure and the woman I spoke to this afternoon said the Director will likely want Chase to see other specialists. Our goal is to get closer to a diagnosis. with a miracle we could walk out with a diagnosis...that's scary. I mean, whatever he has, he already has. Once we know what it is, we have to face it...what if it's really bad? I know it's not great, he's missing a portion of his brain, but what if...


And they say the roller coaster ends in the NICU...

No blood results from last week yet. We should know tomorrow, the nurse called for them from our peds office, they just weren't ready.

When we hear anything from anywhere we'll update here...Thanks for listening!

Have a great night! XOXO

Monday, May 25, 2009

A little "Trey Time"...

This is the first time I've taken my camera to the Memory Garden...It was such a beautiful day that I wanted to share...

Circle of Love, Healing Garden

Trey's brick, where we love to leave little gifts...

God Bless...

Sunday, May 24, 2009

This will be a quick one!

Hi Everyone,

I just wanted to give a brief update, some people have gotten bits and pieces of updates and I thought I better "roll it into one" and sum it up for everyone. We took Chase into the pediatrician on Thursday. He had the same symptoms as he had with each of his 4 episodes with RSV (those very nasty respiratory viruses that landed him in the hospital up to a week). The Dr. thought it could also be pneumonia so she sent us right down to Children's ER. After IV fluids, chest x-rays and blood work, the assumption right now is mononucleosis. We'll have better results on Tuesday. The blood work showed his lymph levels were way off, which usually means mono, but they did some more detailed tests.

What I really am hoping is that he feels fine on Tuesday. He is scheduled for an upper GI and esophagram and he has to be healthy to have them.

The tests are pretests for G-tube surgery...Chase lost weight again...we don't know what will happen.

We'll keep you up to date...Have a good Memorial Day!

I'll leave you with a little bit of Chase and Alex:

Monday, May 18, 2009

Mr. Britton Goes to Washington

He had a GREAT time. He even forgot to call us a few times! That says it all, LOL. These pictures are from my Uncle Brad's house and Mount Vernon. They couldn't take anything into the White House so absolutely no pictures.

From Monday to Saturday they managed to see: The Baltimore Aquarium, The White House, The Capitol Building, The Air and Space Museum, The Museum of Natural History, The National Gallery of Art, Mount Vernon, The National Cathedral, multiple restaurants and at least one Dairy Queen that we know of!

I KNOW I'm missing things...bottom line is they had a wonderful trip and we're thrilled to have him back and thrilled he had the experience!

Nothing new with the little guy right now. He sees the Hematologist Wednesday...other than that, things are as usual...

Take care!!!

Thursday, May 7, 2009

The good (the architect!), the bad (the van's power steering pump) and the ugly (the Brittons waiting for a tow truck in the rain)

That sums it up. Have a good one! LOL

Ok, I'll clarify...

Tuesday the architect came and it went GREAT! We'll have the plans within the next two weeks. Then we find 3 contractors to get bids from, present those to the DDSO (Developmental Disabilities Service Organization)and the project will go from there. She was really very nice and I ALMOST felt bad for "poking fun" at her for canceling and not showing up a few times in a row, LOL.

Now, the van. I love my van, and for some reason, I tend to love things for their imperfections, so it had to show that it too, was imperfect. We were out in Tonawanda, thankfully just off the 290 on River Road when this AWFUL smell hit us, Alex and I first reacted by laughing like little kids. We didn't realize the smell was US! Until we saw the smoke. We stopped laughing really fast, pulled into the Town Hall...saw the fluid pouring onto the ground...called Geico (thank God we pay for their roadside service). They sent a tow truck (eventually) and my Dad picked us up. The tow truck took the van to the dealership. We'll have it back tomorrow, they just had to order a pump. We got a new van over night. We had to run out today and grab the wheelchair, Chase has a hearing test tomorrow and we pick up his AFO's (leg braces) in the morning.

Well, tonight is my FAVORITE night of the week. I live for The Office. It's one show I can watch each season over and over again and say, well my life COULD be tougher...I could be a beet farmer!!!

XOXO!!! Love~Chase's Mom! :o)

Monday, May 4, 2009

A New Milestone!

Chase did it! He was playing on his belly on the floor tonight and sat up, as if it was a normal thing for him to do, then sat there chewing on his toes! He sat like that for about 5 minutes!!!!


YAY!!!!!!!!!!!!! :o)

Signed, One VERY Proud Mommy!

Sunday, May 3, 2009

Alex will be a "Guest of the White House Staff" a week from Wednesday!

Oh my gosh he's SO excited. My Uncle recently retired from the government so he was able to get Alex cleared for a special tour. Maybe Alex will get to see Michelle! I'll be thrilled if he even gets to see their DOG! LOL "BoBama!" He leaves with my Mom and Dad a week from Monday, heads down to the Baltimore Aquarium and then on to D.C. where he will spend a week exploring Mount Vernon, The Smithsonian, The White House and whatever surprises Brad and Charles have in store. (An extended field trip hehe!)

Well MY excitement is that this Tuesday Bernadette (Chase's coordinator, who I will now stop calling "coordinator" because we talk daily, when she calls her pediatrician she accidentally dials my number out of habit, she sends inappropriate emails and her family spent Friday night BBQ-ing at our house. So from now on she'll just be plain old my friend Bernadette, LOL).. anyhow, Tuesday Bernadette and the architect from UB (IF it doesn't rain...snow...sleet...get windy or cloudy...and I imagine if she can get here without making any right hand turns...)will be coming out at 1:30 to draw up the plans for the contractors to begin bidding on the door/porch/landing/wheelchair lift project. Keep your fingers crossed. I was hoping they could do this during warm weather rather than having a big hole in the living room during November.

To those that have been on my back (literally), I have an appointment with Dr. Simmons...tomorrow, sigh. In 2005 I had 2 discs removed from my neck, replaced with cadaver bone (I know, ew), fused, held together with a titanium plate and 4 screws. I've known the whole time I had as little as 1 year and a goal of 10 years before I had 2 more discs to do (also in my neck from an injury when I was 16). The time has come, I can't tolerate it any more. The hard part, knowing I'll be in the AWFUL hard Miami-J collar for 4 months...the thing that makes it easier, knowing I'll have respite care for Chase will help SO MUCH. Knowing I have Alex to help with Chase is wonderful! Having such amazingly helpful friends (hint hint) LMAO!!! My hope is that the van can go to Michigan while I am in the collar and can't drive anyhow.

Oh, I had a great time this week beginning to turn the front porch into an outdoor "therapy room" for Chase! This way I can avoid some cleaning this summer!!! I had a blast in Toys 'R Us, bought a ball pit, a pool that might hold 2" of water and still has a label on the side that warns "no diving"...good thing or Alex might have tried...we got a little tent for him, a bubble maker...outdoor carpet to cover the length of the porch. YAY! Now I need to create gates to block the stairs.

Enjoy the warming weather, come join us on the porch if you happen to drive by and see our heads poking up, LOL! XOXO