CHASE'S PAGE

Progress! LOTS of it!

2011-09-15T11:20:00.000-04:00

Chase says his ABC's and counts to 10!!!

2011-08-01T19:07:00.000-04:00

Chase's Viral News Video...WGRZ Buffalo

2011-02-11T22:21:00.004-05:00

WheelchairFlair!

2011-01-08T16:30:00.003-05:00

Happy Thanksgiving!

2010-11-25T09:08:00.000-05:00

This year I am thankful for...

~Chase's School
~Alex's new school and the fact that he is enjoying it!
~My group of best friends that continues to stay hilarious year after year after year
~Chase beginning to crawl and walking so well with his walker
~My wonderful Husband who is SO fantastic with our kiddos
~All of our family

and of course

Chase

Alex

And our AMAZING Make-A-Wish Ladies!!!!!

HAPPY THANKSGIVING!!!

Look Who's CRAWLING!!!

2010-11-12T09:45:00.001-05:00

Chase has been "army crawling" for quite some time. He "drags" himself along. That is because of his lack of coordination. Suddenly Wednesday his hiney popped up in the air, and on his knees he began crawling. No one was sure he's ever figure this out!!!

                          ^
                          ^
              (Just click play) :)

XOXO

97 Rock "Make-a-Wish radio-thon"

2010-09-16T15:10:00.000-04:00

ELMO!

2010-09-16T09:47:00.000-04:00

Make-a-Wish Part 2

2010-09-16T09:30:00.008-04:00

Chase had a fantastic time Tuesday night getting into everything (ok, so did Mom and Daddy)!!! Half of his room is completed, half is being delivered here soon, so the fun goes on! Tuesday night he was given a desk, bean bag chair, multiple rope lights, net lights and a lighted bubble tube. He got many room decorations including mirrors and decals. We opened multiple tactile sensory toys, motion toys, Fisher Price toys, giant blocks, and an adapted swing...Still to arrive are his fiber optic ceiling, a karaoke machine, physical therapy equipment, a trampoline, gym mats, an adorable rug, a wave shaped bookshelf, a water table etc. etc....AMAZING!

XOXOXOXOXO!!!!!!!!!!!!!!!

Tomorrow is Chase's WISH DAY!

2010-09-13T19:55:00.000-04:00

All I know is that tomorrow, at 6pm, ELMO is going to show up at our front door with a truck load of sensory items for Chase! I'm so excited I can hardly stand it.

Thank you, in advance, Make-a-Wish of Western New York!

I will be posting many pictures soon, I promise!!!

XOXO

BYE BYE BUTTON!!!!!!!!!!

2010-08-20T10:46:00.000-04:00

No more feeding tube! Happy...HAPPY day!

Saying Goodbye to the Feeding Tube

2010-08-09T11:02:00.001-04:00

It has been only eight months since Chase got his G-Tube...and it's been two months since we used it! We hope to be tube free by his birthday. It's normal for kids to lose up to 10% of their weight when taken off the tube feeds, Chase has gained!!! He's doing fantastic with food. When he got the tube he was 20 pounds and he is now 25 pounds 6 ounces.

We had our meeting with the school district last week. It went fantastic. He'll be going to preschool three 1/2 days a week. He'll be going to CHC (Center for Handicapped Children) Learning Center in Williamsville. On the days he's in school he will have therapy with their therapists...and the AMAZING part is that the district is allowing him to keep his therapists at home the days he's out of school. We brought a few of our girls to the meeting and I think it helped that Anissa cried, lol. She and Chase have a special bond!

We visited CHC 2 weeks ago (then requested that Chase go there) and I was so impressed. Their philosophy is to not hold anyone back, if Chase is ready for "traditional" school before kindergarten, they will move him on.

I went into our visit at CHC with the attitude "I'm just looking, he's going to a normal preschool". As soon as I saw everything they had to offer, I knew I was being ridiculous. At a traditional preschool, what would Chase do on the playground? Where would he sit during circle time? Who would help at lunch? I want him to be as "normal" as possible, and CHC will help him to do what is normal for him.

I can't believe he's almost 3! When did that happen???

I remember when he fit in my hand!

XOXO

Special Needs, Special Moms, Society

2010-07-11T12:35:00.000-04:00

I have started a much needed support group on Facebook...please join and invite others as well!

We plan on having a lot of fun and being there for one another when other friends might just not understand...

http://www.facebook.com/group.php?gid=125145890861759

Make-A-Wish Part I

2010-06-29T11:08:00.004-04:00

Last Thursday night we had a wonderful visit with our volunteer team from The Make-A-Wish Foundation, Miss Margi and Miss Kayleigh. Chase's PT, Sarah, Special Instruction Teacher, Anissa, And Speech Therapist, Denise, were all there to help design the perfect therapy/sensory/play room for Chase. The entire room's theme revolves around this set of wall mirrors:

There will be a "starry sky fiber optic ceiling", tons of mirrors, tons of lights, a bubble tower that changes color to his voice, a trampoline, karaoke machine, lots of texture exercises, gym mats, a big storage shelf shaped like a wave, a big vibrating turtle, a water table, a spin top big enough to put him in and spin him around (lol), and a bunch of other therapy items and toys!

I can't wait!

Margi and Kayleigh stayed until around 9pm, at 10:30 that night Margi called to say she had gotten Alex and a friend each a spot at the "Geek Squad Academy" for 4 days in July! HOW SWEET is it that she was SO excited to have done something for Alex!?!? So Alex and Christopher (Paula's son and longtime friend of Alex) will be geeking it up together this summer! They'll be learning about making movies, editing music, etc.

As soon as we hear anything new I'll be sure to fill you in. XOXO

Before & After Pictures of our New Home!

2010-06-21T17:54:00.021-04:00

Busy Busy! Yesterday was "Media Day" with the USDA. What a nice event! There were 23 people total including friends, family and Chase's therapists. The representatives from the USDA spoke first about our family (it was so sweet!) and gave us a giant key and big hanging basket welcoming us home. We were then given a chance to share our appreciation (I made Dave talk while I held a sick Chase, of ALL days for him to be sick) followed by a front lawn photo shoot :o). John, from the Batavia USDA office brought a ton of cookies and drinks provided by his wife! YUMMY! We were interviewed by the Clarence Bee, now I have to find out when the Bee comes out. lol I'd hate to miss it!

Since we've spent the last 3 weeks doing nothing but fixing up the house, we figured it's time to share some pictures!

DRUM ROLL, PLEASE!

Disco Balls!!!

Our favorite new spot!

Chase in a bag! (A gift from the USDA):

Our other big news is that Chase's pediatrician referred him to Make-A-Wish. They will be coming Thursday night, with all the therapists, to help plan a therapy room for him! He needs a place to play where he can throw himself around without us worrying about him hitting his head on a table edge! We're SO excited!!!

HAPPY SUMMER EVERYONE!!!

Chase and Anissa (his Special Instruction Teacher)

2010-06-11T07:52:00.002-04:00

Sorry about the video quality...I took this with my phone...it's still adorable! :o)

A Work in Progress

2010-06-08T20:44:00.002-04:00

Pictures of the house are coming soon! We've been working night and day to make it "our house" and we are thrilled so far. We've been working night and day on painting, light fixture changes, spackling. landscaping, tiling, cleaning, sorting and arranging, all in between greeting therapists, changing diapers, laundry, unpacking, amusing Chase, shopping at Lowe's :o)...I have a thousand phone calls to return and just as many thank you notes I'm behind on...ACK!

Pictures soon, I PROMISE!!!

XOXO

I am as proud as can be!

2010-05-21T12:04:00.004-04:00

( ^ just press play)

Chase got his new gait trainer this morning...His PT said it would take a while to get used to it. Chase had other ideas, he TOOK OFF! I'm so proud I can hardly stand it!
XOXO

Chase is going to be in the news again!

2010-05-20T17:04:00.013-04:00

I had a VERY interesting call this morning! The USDA Rural Dev. program has chosen our family (Chase really) to do a media piece/"success story" on, for "Homeowners month" next month! A house full of people including multiple people from the USDA (including Darcy if she can arrange the time to come from Syracuse), Chase's therapists and service coordinator...Oh my Gosh! I have to get in there and start painting!

We close one week from TOMORROW! WOO HOO!!!

Here are some "Before" pictures...imagine the front door painted a deep wine/mahogany, boxwood across the front of the house, flowers etc. These pics are from late winter, so not very spring like!

I will post more once we get in and I have good pics to show...YAY!

The BIG news...

2010-04-23T10:53:00.005-04:00

We bought our very first house! With the assistance of an amazing program Chase's Service Coordinator made us aware of, we were able to get an amazing rate, no money down loan...we bought a ranch in Clarence (a great district for special education as well as High School for Alex!). It has a wide open floor plan, perfect for Chase. As soon as we close (scheduled for the last week in May) the Department of Disabilities will come in and modify as far as ramps (garage, front door), widening doors and possibly a wet bath. We are so excited we can't stand it. We didn't want to say anything until it was certain. We will keep you posted on the progress!!!

AND...Chase has won an award! He has won student of the year, for his amazing progress, through Heritage Centers Early Intervention Program. He will be recognized at an award ceremony May 26th. That's my boy!

XOXO

Happy Almost Spring!

2010-03-14T17:38:00.009-04:00

I should have updated sooner, but there isn't a whole lot of news. The most recent excitement was a few Friday mornings ago. I went to get Chase up in the morning, opened his jammies to undo his feeding "button" and the "balloon" that holds the button in his stomach was in his jammies. Uh-oh. We immediately called Children's on-call surgeon. We have been told to get this back in ASAP because these holes can close up in as little as an hour. Soon we will be taught how to put them in ourselves, but we hadn't been yet. Over the phone the Dr. was trying to get us to gently force it back in. There was no way. We took him right to the ER.

The ER Dr. figures it must have come out early in the evening, 8 or 9 hours before. It took hours to open it up. Tylenol with codeine, lydocaine shots (at mom and dad's insistence, he was screaming!), and they were using these horrible medieval dilation tools on his poor belly...we were so relieved when they finally got it. He slept the rest of the day and through the night.

On to the fun stuff. His walking is going GREAT! He tries to push Sarah away. He really wants to do everything on his own. Maybe some day!

He started aquatic therapy last month. Thanks to Alex it's going fantastic! The first week he was miserable. Then we started making Alex get in with him and the physical therapist and it's been wonderful.

Colleen, Chase's PT during swim Therapy

Oh, Chase had his annual low vision evaluation last week...AMAZING...remember when we were told he would most like be completely blind? He tested at 20/80 and continues to IMPROVE!!!

Yeah, he's pretty cool, lol.

All other therapies are the same, progressing great...getting ready for a "bit" of preschool in the Fall (I'm NOT ready at all for this, but everyone keeps telling me HE is).

I will do my best to not go so long between updates...

Take care, God Bless, Happy Spring is Almost Here!

Love~Heather

Chase's walking, improving by "leaps and bounds"!

2010-01-21T20:53:00.003-05:00

Just press play! :o)

G-tube surgery & Van Updates!

2010-01-20T17:59:00.008-05:00

I can't believe we're coming to the end of January, but I am so glad to have the first part over. Chase had his feeding tube placed at Children's in Buffalo on Monday, January 4th. The surgery went perfect. He was admitted through Thursday, Dave and I stayed the whole time while Alex stayed with Grandma and Grandpa Handy, lucky boy!

We brought Chase home Thursday afternoon and were met by a nurse from the Visiting Nurses Association. They delivered boxes of supplies including a pump for continuous overnight feeds, and Chase's very own IV pole, maybe we can put racing stripes on it! He'll get formula through the tube constantly overnight, then eat normally during the day, gradually increasing his daytime food, while weaning him off the g-tube. (Hopefully in a year or two we can have it closed up with a stitch).

He had a few minor issues the weekend following surgery, a touch of stomach virus followed by an obstructed bowel, but both were minor. He's doing fantastic!

The nurse now comes to the house once a week. Last week, 1 week after surgery, he'd gained 1 pound 5 ounces. I was SHOCKED. I knew it happened fast (and I know we adults can gain way faster than that, lol) but it took him all of 2009 to gain ONE pound!

Our other news...we have the van back!!! The modifications are fantastic! It's all electronic and amazing! THANK YOU THANK YOU THANK YOU again to everyone who helped!

And I can't leave you without some CHASE!

Who said he'd never sit by himself??? :o)

TAKE CARE!!!

Christmas Day (and Eve) Pics

2009-12-25T19:39:00.019-05:00

Merry Christmas!

An excited Chase!

Grandpa and his "granddaughter", Riley.

My boys, LOL!

Wishing Everyone a Wonderful New Year!

2009-12-24T15:52:00.004-05:00

Merry Christmas!!!

Love~Chase, Alex, Mom and Daddy!

H1N1

2009-11-25T08:49:00.002-05:00

Well...Chase is a tough little cookie! Last Thursday night he went to bed at 9:00, everything perfectly normal. Around that time Alex started saying he didn't feel very well. By 11:00 Chase was awake with a fever of 102.6, Alex had a fever around 102 and both had a horrendous cough. We survived the night and took Chase to the doctor Friday, he now had a fever of 104.2. (When Alex is sick we put him in front of the tv with ginger ale and kiss his forehead, give him a little Tylenol and he's fine, we don't have to panic like Chase).

The pediatrician swabbed his little nostrils and he tested positive for H1N1! Both he and Alex were scheduled to be vaccinated at 10:15 on Saturday, of course. They were both put on Tamiflu, and as long as Chase did well with the Tamiflu for a couple of days we could add an antibiotic to prevent bronchitis/pneumonia which was our huge concern.

We went home, stayed on top of the fevers, kept as much fluids into him as possible (NOT easy at first)...Grandma's chicken soup helped SO much! He LOVED the broth! That got him eating again. We were just about to take him to Children's for IV fluids when he started downing chicken broth.

By Saturday night they both were really starting to go uphill, I was amazed and worried something was lurking around the corner...but there wasn't! Sunday the pediatrician called in Z-paks for them both. Dave had started antibiotics the day before (he and I both have bronchitis already) and I started a Z-pak as well on Sunday.

The kids are doing GREAT! Chase is perky, silly...Alex is back to talking loud and nonstop. After all the horror stories I just wanted to let everyone know, the diagnosis CAN be managed. GET the antibiotics BEFORE the secondary infection!!!

Thanksgiving has been canceled, but I'd rather have healthy children! :o)

HAPPY THANKSGIVING!!!!!

Chase is working on WALKING!

2009-11-13T12:59:00.003-05:00

G-Tube update 11/4/09

2009-11-12T13:17:00.001-05:00

Hello! We just got back from Chase's consult with the the surgeon (Dr. Caty) and wanted to let you know he is scheduled for surgery on January 4th unless something opens up sooner, grrr...his schedule is packed because he's off a few weeks with the Holidays coming up...we really liked him...he'll be doing an umbilical hernia repair (Chase will finally have a beautiful INNIE belly button!!!) and the g-tube. He said to expect to have it for a few years (that's considered temporary in g-tube world). He was in total agreement that it doesn't have to be a permanent thing and that we should really focus on solid feedings once the tube is placed. At least it's finally scheduled, a step in the right direction!

Take care!

Phone call from Dr. du Plessis

2009-10-27T19:03:00.011-04:00

I gave it a few days to sink in before posting, I apologize. Last Thursday night Dr. du Plessis (Chase's Neurologist in Boston) called. He had been in contact with several specialists and wanted to fill me in on their discussions.

#1. He had given a fetal radiologist the images we took to Boston from Dr. White. The radiologist confirmed that Chase absolutely had 2 perfectly formed cerebellar hemispheres, a.k.a. a normal cerebellum before he was born at one point. This has Dr. Du Plessis and several doctor's he has spoken with very confused because of the fact that there is NO scarring on Chase's brain, NO sign of injury and absolutely NO cerebellum...

#2. He spoke with two specialists in the Netherlands about testing Chase for a genetic syndrome, Pontocerebllar Hypoplasia (PCH) which we discussed during our visit to Boston. We are arranging to have the sample drawn, packaged and shipped to Amsterdam. The specialists have never seen a case of PCH with "Vanishing Cerebellum" which is basically what Chase has (had?), but there are multiple types of PCH and he could be a new category.

So we are all very confused with where his cerebellum and pons went, why there is no trace of it, no sign of injury and thank God why he is doing so WONDERFULLY!

He has a new physical therapist who we adore. She has him WALKING...she's helping an awful lot of course, but she is determined to get him moving.

He is beginning to sign with his speech therapist, sing with his teacher, identifies body parts, identifies pictures, has an extremely sarcastic laugh which we are extra proud of, LOL. He will take YOUR hands and teach YOU to clap or sign "all done".... I'm telling you, g-e-n-i-u-s! It's just taking a little longer for him to show it! He plays on the floor up on all fours all the time now. Gets into cupboards. WATCHES SPONGEBOB! (free time for mommy!)

He has an appointment with the surgeon about his feeding tube insertion on November 4th...

His P.T. just put through paperwork for him to start swim therapy once a week.

OH! Main Mobility on Main Street in Clarence won the bid for the van modification!!! We're so happy. We met with them before we bought the van because we didn't even know what we were looking for. It's going very soon now! FINALLY! It will be a long 6-8 weeks, but well worth it. Now if we could get a modified house to park it in front of...no we haven't found anything even close yet. It's amazing how picky we have to be and how unpractical houses are when you have a child that will realistically be in a wheelchair/walker indefinitely...

Ok, I can't imagine I've left anything out, except that, since this is MY favorite time of the year I have to say:

HAPPY HALLOWEEN!!!!!

a few Boston pics:

This is "Moofie the Giraffe". Alex bought him for Chase with his own $ while Chase was in his MRI...Chase IS in the van, I promise...

Our room was GREAT!!! We'll be staying there again!

It was a VERY long 3 days...

Brotherly love!

Take Care Everyone!
We'll keep you updated, XOXO

Boston Children's Hospital

2009-10-08T11:01:00.005-04:00

(I admit, with exhaustion as an excuse, this is a cheat, I copied my email update and simply and lazily posted it here. If you got the email, please don't feel cheated or unloved. It doesn't make the blog any less important than the email!!!) 8o)

We had a very successful trip to Boston, although are a bit tired, we got back at 3:00 this morning.

Dr. du Plessis was everything we had hoped for. He sat with us for two hours, went over images from each of Chase's MRI's (including a high resolution scan done Tuesday morning), revisited Chase's entire history, and learned all about Trey.

The detailed scan showed Chase has never hemorrhaged, he has no scar tissue in his brain, nothing has gotten progressively worse. The bottom line, he has no cerebellum (as we know) and no pons (a portion of the brain stem which is developed from the same cells as the cerebellum during development). What we learned from the detailed scan: because there is NO scar tissue etc...the assumption is that there was no injury. The cerebellum and pons may never have existed. The fetal radiologists are going over my ultrasound images and are looking at his brain while I was pregnant and trying to figure out what could have been mistaken for cerebellum. This would mean a definite genetic disorder.

Dr. du Plessis had one idea of a syndrome to look into, it can be tested for, in Holland. Can you fly blood business class???

We will be in contact with Dr. du Plessis again soon, once he has spoken with the other specialists we met with etc. We have eagerly agreed to see him once a year while being followed more regularly by our local neurologist.

His partner, Dr. Limperopoulos from McGill in Montreal, ended up needing to go back to Montreal and we missed her. He will be sharing the info. with her and she will be coming up with more information for us as well.

OK, so at 1:00 we were off to ophthalmology. That was pretty much unremarkable. No news there.

3:30, Genetics. By then, we were nuts. I mean, we had major giggles. (We got to Boston Monday & Chase was so excited he decided to stay up all night...) Anyhow. The genetics doctor we met with is semi-retired, not that it matters but the first thing he said to me was, "I get most of my answers from parents, what do you think happened?" Keep in mind, I was batty, I must have looked at him really weird because all I could think was, I drove 8 hours hoping YOU could tell ME...it gets better.

He looks over Chase very well and goes to his computer to plug in Chase's "quirks" into a program the doctors here have been using. You insert markers and it gives back possible syndromes. The one thing the doctor mentioned that we hadn't heard before was that Chase has extra creases on the palm side of his wrists, he has 4 (I just made you all look at your wrists!) the doctor said he's never seen 4 before. Well when he went to his computer in another room, Dave, Alex and I all had to study our creases...I have 4 on my right wrist. I walked out in the hall and showed the doctor and he said it's not the same...mine is FAT...LMAO...

He came back into the room, told us a syndrome it could be, told us to monitor his liver and good luck.

The reason we went to Boston was the neurologist, and we are so glad we did! But we wouldn't trade Chase's geneticist here in Buffalo for anything!

One more quick note. Chase is losing weight. He's down closer to 20 pounds again. We have a consult November 4 with the surgeon for a G-tube to fluff him up. I wish it were sooner. I'll try to work my magic.
For now I must go down LOTS of caffeine!

XOXO

Chase is TWO today!

2009-08-24T11:03:00.003-04:00

How time flies!
It's so good to look back and see the progress he's made.
We had a very nice weekend with friends and family. We ate too much cake (Chase didn't eat enough cake :o)), probably overdid it on the ice cream too, but this was a celebration after all! I can't believe it's been almost 2 1/2 years ago now that we were expecting Chase to not be here. Look at him now!

HAPPY BIRTHDAY CHOOBIES!

XOXOXOXOXO

Genetics Results

2009-07-28T09:15:00.002-04:00

NEGATIVE

On to the next diagnosis...At least we don't have to worry about Chase and cardiomyopathy now!

I got a very nice phone call from Dr. Du Plessis (from Boston Children's Hospital) Sunday afternoon. He suggests we look deeper into the possibility that Chase hemorrhaged into his cerebellum before birth. We have scheduled to go to Boston the first week of October. We will have a very detailed MRI (it will give a lot more info. than the ones he's had here) and then sit with Dr. Du Plessis and Dr. Limperopoulos (the Dr. I've been speaking of from Montreal) to discuss findings on Oct. 7th. They can't promise a diagnosis but this is what their research is focused on, so if they can't diagnose Chase, down the line, our hope is someone's child will benefit from what they learn from Chase.

Ok, other news...September 14th...EYE SURGERY!!! Dr. Awner will be tightening the muscles in the back of Chase's eyes to straighten out the cross-eyed appearance. It won't change his vision except to help him use his eyes together more.

That's it for now, we actually have a quiet week, KNOCK ON WOOD!!!!!

Have a great week, enjoy the sunshine we finally have if you're in WNY!!!

XOXO

MRI Results

2009-07-22T17:21:00.007-04:00

Just after I wrote the previous post I got a call from Dr. Senn, the DAY after the MRI with results! No, his cerebellum didn't grow back (I can joke, he's mine)..."his brainstem is not worse (not better, no change)...the rest...myelin, white matter, high cortex...IMPROVED AND MATURED VERY WELL!!!!!!!!" Thank God! How that man managed to get results 24 hours after, I'll never know...

Ahhhhh. Well, that feels good. I just expect the worst. You have to admit, we've had some major phone calls over the past few years, now we expect them. So right now I feel pretty darn good!!!

Exhausted

2009-07-22T16:21:00.003-04:00

I don't have any results yet, but I can tell you that Chase is scheduled for eye surgery on September 14th to tighten the muscles!!! YAY!

Hope for fast results, I'm dying...for blood results, and now MRI...I have the disk from the MRI, all the images...now if only I knew what it all meant! LOL

XOXO

A Very Complicated Time, May Bring Answers...

2009-07-19T14:44:00.002-04:00

Sorry I haven't posted...we've had a very interesting/involved couple of weeks. I'm not going to go into too much detail, but I will say that Chase had some special blood work drawn on Thursday to test for a specific type of syndrome. We've been in contact with a few doctors out of state and one (who has played a major role in suggesting this diagnosis) in Montreal. We'll give full details when we get the results (hopefully late this week!)

I will only say this, if it's positive, it not only explains Chase's symptoms, but Trey's as well. Different symptoms, same syndrome, as amazing as it sounds, we'd have so many more answers than we EVER had hoped to have!

Chase has a VERY busy week coming up. On Tuesday he has his MRI under general anesthetic. Wednesday is his 3 months follow up with his ophthalmologist to discuss surgery to correct his strabismus (eyes crossing). Thursday we go to a NEW doctor (just what he needs, right?) to be followed by hematology to have his clotting factors tested (liver function).

Aside from the medical mumbo jumbo he's doing great. This week his new thing is playing sooo big, and stretching his arms up as high as he can! He and the dog have begun fighting over the sun spot on the living room floor in the morning, it's great, Riley's trying to sleep, Chase's trying to play and they're all squished up back to back trying to soak up some sun, neither willing to budge!

He's trying new foods. This week he's tried chicken, pork, baked potatoes with cheese, crackers with soynut butter (YUM!), pancakes, black olives...I had to, they're my favorite. Everyone is horrified, but he loved them!

Well, as soon as I get results I'll fill everyone in. I can't imagine what it would be like to KNOW!!!!!

I have to take a minute to thank Mollie, aka Daxton's Personal Assistant, one of my Blog Buddies. She lives down in Tenessee and her son has a milder case of cerebellar hypoplasia (also with no diagnosis or cause at this time, I say milder because he has some cerebellum, it may not be the right term...). The doctor we have been in contact with from Montreal offered to work with her son if she ever got up there...figuring the distance was too much, she passed along the info. to me...Mollie...Dr. L. may have led us to a diagnoses this week....which would not have happened without YOU...thank you so much for sharing the info!!!

I will be in touch after the MRI if we get to talk to the radiologist...

Take care!
Love~Heather

A Little Thank You

2009-07-02T21:16:00.003-04:00

I made a little design and sent it to an internet company to turn into a bumper sticker...Not, the ribbon, the other one :o)...
Bernadette, Chase's service coordinator, said they should hear some news about the van modifications on Monday.
I REALLY don't want to let it go for 6 to 8 weeks!!!

XOXO

(click to see detail!)

A "Happy" Neurologist Appointment Yesterday

2009-06-27T15:17:00.001-04:00

Hello!

Yesterday was our follow up with Dr. Qasaymeh at Dent Neurology. This was the first time Dave was able to meet him, he couldn't make the first appointment. Nothing new on the diagnosis front. Everyone will keep researching syndromes and until they can come up with some things for genetics to start testing for (they are very specific and expensive tests at this point), they just keep looking.

Dr. Q. was THRILLED with Chase's progress just over the past 3 months. He was really surprised by his tone and muscle control. He explained it to us like this, there are 3 types of neurological disorders:

Type 1: progressive, meaning the patient progresses at his/her own rate and continues to develop, improve, get stronger and healthier..
Type 2: the type that where the patient will neither progress or regress...
Type 3: regressive, the patient loses skills

He said Chase is definitely a type one, and said, "I can't say this from a medical standpoint, but I would not be surprised if he started getting up and walking".

Sounds good to me! I don't care if he's 10! I can wait...

He's sending Chase for another MRI, we'll know the date by Monday. They're are doing a more detailed one with an MRA...

(courtesy of neurologychannel.com, lol):
A special type of magnetic resonance scan (called magnetic resonance angiography [MRA]) is used to produce images of blood vessels (e.g., arteries, veins). This test is used to detect blood vessel abnormalities such as aneurysms and atherosclerosis (i.e., plaque build-up in arteries) and to evaluate blood flow.

We were nervous about a second MRI for fear of them finding something getting worse. Dr. Q. said he feels that Chase's condition is static. He had a one time, severe hit to the brain, but it won't happen again. He also said if something were getting worse we wouldn't be seeing such great progress.

Yay! I slept really well last night.

We had another swallow study (not so much we as Chase had another one :o) ...) last Tuesday, hehe...he did great, no aspirations. He's ready to pack on the pounds. We took him home and gave him an Oreo. You would have too. Admit it!

Well, Chase has a few new tricks and we finally caught one of them on video...KISSES!!! ENJOY!

Love, Heather

Chase's Kisses!

2009-06-27T15:12:00.002-04:00

Sorry it's not recorded in the best quality and the sound doesn't always line up perfectly...I still love it!!!

Developmental Checkup

2009-06-17T18:04:00.004-04:00

First of all I guess I forgot to mention that we will be heading to the Kennedy Krieger Institute the 1st week of August. We have appointments Monday and Tuesday...one with Neurology and one with the Director of the Neurodevelopmental Clinic, Dr. Hoon. We are extremely excited/nervous!!!

Dr. Senn is really happy we're going to Baltimore! He has heard Dr. Hoon lecture several times and said he's excellent and we're fortunate to be seeing him. (He isn't familiar with the other doctor we are seeing.) We asked about anything to prepare for the visit, i.e. a follow up MRI, he laughed and said, "DON'T do it here, let them do it there, they're the specialists and he'll do a very specified one". He's sending Chase for a second swallow study next Tuesday to recheck for aspirations and he sent him for hip x-rays yesterday. I took him to the peds office twice in a mini panic because his legs were VERY different in lengths. By the time we got there they were fine and the doctor said if there was a dislocation he'd be in pain. Well Dr. Senn pulled on them yesterday and could make them each miraculously grow an inch and a half without trying. They both look to be dislocated, he said it's just something to watch for now if there's no pain. We have the films, of the hips and of January's MRI, to take to Baltimore...

If the swallow study doesn't show aspirations we'll keep doing what we are to try to get some pounds on Chase. He's up to 20 pounds 8 ounces after going down to 20 pounds while having mono. That's skinny on a 34 inch body! If the test shows aspirations we'll be back in the direction of a feeding tube. They were happy to see the weight recovery after the mono so fast. I think that bought us some time to try ourselves again.

Developmentally he's very happy with Chase's progress. Chase put on a nice show, tried to sit up, laughed and babbled and showed his stubborn side, lol.

He does has one new trick. His favorite new game is "Monster". He gets in your face and makes a quiet noise which very quickly gets REALLY loud until you jump and tell him how scary he is!!! He LOVES it! I have to get it on video.

On to our big announcement. We've canceled the home lift modification. The van modification is on hold. The state is moving slowly on them because of problems with the bid process right now, we have our paperwork in and are just waiting...since the lift won't help without the van, we began to rethink our plan...

We are on a one year savings plan, with assistance from the DDSO and the County...and M&T :o) ...our plan is to buy a house by June 2010. A ranch...open floor plan, in Clarence (the best Special Ed. program around, excellent for High School for Alex as well). Plenty of room for Chase to scoot, wheel or even run, depending on whatever may happen in his future.

Remember Bernadette? Chase's coordinator that we love so much we adopted as our friend? She's also a Real Estate Agent! Is that convenient or what?

Well that's enough for now. Next Friday we see the new Neurologist that we adore...we'll definitely update again then!

Til Then! XOXO

Tomorrow...

2009-06-15T22:47:00.002-04:00

We have a "big" appointment with Dr. Senn., Chase's developmental specialist who has taken over everything at this point, tomorrow morning at 8am...we'll have an update with all kinds of news then...

Until then...Good Night!!! *Yawn!*

Chase's New Hot Rod

2009-05-30T09:05:00.011-04:00

I would like to introduce you tooooo.......Chase's very own, Ottobock KIMBA....in 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!!!!!

A few Bits of News

2009-05-26T19:59:00.002-04:00

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...

ANYHOW...HIS SUPER COOL NEW WHEELCHAIR WILL BE HERE....IN THE HOUSE....THURSDAY MORNING!!!!!!! YAY!!!!

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

A little "Trey Time"...

2009-05-25T19:13:00.008-04:00

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...

This will be a quick one!

2009-05-24T16:13:00.003-04:00

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:

Mr. Britton Goes to Washington

2009-05-18T11:58:00.020-04:00

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!!!

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)

2009-05-07T19:14:00.005-04:00

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)

A New Milestone!

2009-05-04T22:52:00.003-04:00

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!!!!

HE SAT UP BY HIMSELF!!!!!!!!!!!

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

Signed, One VERY Proud Mommy!

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

2009-05-03T13:41:00.004-04:00

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

Mini Update

2009-04-29T08:10:00.009-04:00

I have to show off the fact that Chase has recently discovered...hands and knees! Not bad for no cerebellum!!!
I also am quite pleased, he's turning into quite the musician!

I should have news today about the porch/door/wheelchair lift because yesterday was the rescheduled day with the state, architect and Chase's coordinator...but this time the architect canceled because it was raining...this is proof, she's the Wicked Witch!!!

Next week he has another hearing test. I'm trying to think if we have any big appointments in May...Ok, here's the lineup:
May-Hematology to check coagulation factors and to find out why his carbon dioxide levels and BUN levels have been off so often (causing his frequent bouts of dehydration)
June-Neurology-back to discuss any options, ideas, any genetics testing they may want to consider etc...
Developmental Clinic-They are overseeing all of this...God Bless them...I couldn't do it...Let's hope he's gained some weight by then and we don't have to discuss feeding tubes...
July-Ophthalmology-He's seeing us back after 3 months instead of the usual 6. I think we'll be discussing surgery to straighten out his eyes! YAY!!! He wouldn't be doing this if he weren't able to see well at all. I am very excited about this. I would be so thrilled to take a head on photograph without it coming out cross-eyed. Not that he isn't gorgeous, of course...

On a non medical exciting note I have to add that Alex is getting ready for a big trip with my parents to D.C. for a week! He's leaving May 11th and is going to have SUCH an adventure!!! He is so excited.

Chase is fussy, I'll give more details soon.

XOXOXOXOXO!!!!!!!!!!!!!!

The "Chasemobile"!

2009-04-19T21:01:00.002-04:00

Thanks to all of you...

2009-04-19T12:11:00.002-04:00

We brought home our new baby, a Nautical Blue Toyota Sienna, on Friday. I will have pictures soon. I have been too busy driving it!

We should get to enjoy it for about a month before it gets shipped to Michigan for 8 weeks for the modifications. I'm going to miss it! I want to say once more how we could never have gotten the quality we did without your help. We had looked at MANY vans, but with the states requirements, and needing to keep the van a minimum of 7 years...we are thrilled! The 2nd and 3rd rows of seats will be pulled right out, the 2nd row bucket seats will be replaced with narrower "jump" seats, putting Alex closer to the window...The Sienna comes equipped with side curtain airbags along the entire length of the van. This was the selling point.

One big project down...now just that front door and lift to go and I think things will "kind of" quiet down for a while!

Oh, one quick note. I was talking about the kindness of strangers recently. You know we switched neurologists just a few weeks ago. The assistant, Steve, called me two weeks ago and asked if we would mind if they had a dress down day for Chase! He called us back last week and asked if we could pick up the check, Dave stopped down during the day and picked up a check for $322.00...are people amazing or what??? This office is incredible. I told you there was something that clicked as soon as we went in. Steve told Dave that Dr. Q. is working hard for us so when we go back next month we have something to work toward, maybe something to explore.

Baby steps...

Love~Heather

Easter Pics

2009-04-13T08:37:00.000-04:00

HAPPY EASTER!

2009-04-12T11:16:00.003-04:00

I hope everyone is having beautiful weather and a wonderful day with family and friends! We will be going to my parents house at 1:00 for the best chocolate, great food, and I'm sure plenty of laughs!

We had a "light" Easter at home. Alex had a basket with some candy, a Blockbuster gift card, some Xbox Live points (don't ask, I don't get it either) and granola bars I stole out of the cupboard last night to take up space, LOL. Chase went empty handed...now don't feel bad. He can't eat the candy, he already has 4 or 5 stuffed bunnies and has a zillion toys....AND....I think he's getting a giant cobalt blue egg...

We put a deposit on a Toyota Sienna yesterday (it really does look like a sparkly cobalt blue egg!). (Insert Heather's HUGE smile here) We brought it home overnight Friday to really think about it. Took it back yesterday to talk about terms...and have to wait til tomorrow to see if they can get it down to the payment we are insisting on(thanks to a mega down payment made possible by all of our friends and family as well as perfect strangers, there is NO way we'd even be talking about this without any of you!). I never thought we'd find a Toyota, anywhere near our price range, within the miles and years to satisfy the states limits to be approved for the wheelchair modifications. IF we get it, after the paperwork goes through (that takes about a month) Main Mobility then ships it off to Michigan where it lives for 2 months while having it's floor lowered, a ramp added to the back, the 2nd and 3rd row seats ripped out, jump seats added to the second row and a place for Chase's wheelchair in between the jump seats ($17,000 of modifications). Now, one of the reasons we were sold on the Sienna...Side curtain air bags the entire length of the van. Alex will be much closer to the window in the jump seat so we feel MUCH better with this feature. It's going to be hard getting a van and then sending it away for 8 weeks...but so worth it in the end.

The day after tomorrow is the big day the Man from the State department, the Architect from UB and a representative from Early Intervention come to plan out the lift, stairs, door, landing etc. for the living room.

It seems like maybe some progress could be made this week. Keep your fingers crossed and say some prayers!

Have a wonderful Bunny day, don't get sick on chocolate!

Love, Heather

Now that I can breathe again...

2009-04-04T10:09:00.002-04:00

Aaahhhhh, I can take a moment for a Chase update.

Ok, well, now that we feel close to normal after the benefit (ok, still a little high, but rested) I can fill in on some of the latest news.

The Biggest and Best news remains the benefit. We continue to get donations as the week goes on and can't thank everyone enough for the support. Tonight we are heading over to Basil to look at vans. Bernadette (Chase's service coordinator) has the paperwork on her desk ready for the state to modify a van for his wheelchair. Now all we need is the van itself.

As for the ramp on the front of the building...DENIED...the grade of the front lawn makes it impossible. The only thing possible was to add a front door to our living room, add a 5x5 mini porch, steps down to a 5x5 slab of cement with a mechanical lift...we were told the state MIGHT cover the lift, the porch and the cement. We would have to buy the door and pay for the contractor. We agreed. (Chase may be starting a center based program this fall and to get him out every morning would be awful in the snow with the wheelchair and 9 stairs...) The state came back out this week to look again. They had a meeting Thursday morning. I waited for the phone to ring. It did, with Bernadette's adorable little voice on the other end saying "I have good news", I didn't even know what that meant, LOL. The state approved the whole deal. EVERYTHING...they're even paying for the door!!! They must have thought Chase was extra cute or something!!! (The Landlord also approved this, she said the condition was we have to have it say "Chase's Door" on it somewhere, LOL, we've been here for 9 years. She's going to have a really hard time getting rid of us!)

That helps beyond words.

Chase starts with 2 new therapists this month. We are adding speech and a special instruction teacher. We are running out of things to add.

He was casted yesterday for Dafo's...sounds funny doesn't it? They are his little tiny leg braces. They are so cute! He only has to wear them while doing weight bearing exercises. I got to pick the colors. That made me feel important for a few minutes anyhow.

We found an amazing new neurologist. He came here, to Dent, from Strong last year. He and Chase bonded immediately. He spent well over an hour with us. He told us that Chase is probably 1 in 10 in the world with this condition. He told us we'll have to learn together. He didn't try to pretend he knew more than he did. I really appreciated the way he spoke with us.

Oh, one more thing. Chase suddenly started drinking (high calorie Pediasure) between 28-36 ounces a day about 2 weeks ago so we're waiting to see if it stays that way. Maybe no feeding tube!?!?

Ok, If I think of more I'll be back....

Thank you everyone again. I'm sorry I can't thank everyone individually, we don't even have any way of knowing who makes deposits into the account, which is very hard...Just know that you have all made a HUGE difference!!! THANK YOU!!!!!

More Pics

2009-03-31T16:16:00.002-04:00

More Benefit Pics

2009-03-30T17:14:00.000-04:00

Benefit pics preview:

2009-03-30T17:13:00.002-04:00

Here is a preview of our fantastic evening:

THANK YOU!

2009-03-30T17:13:00.001-04:00

Thank you for a WONDERFUL evening! We are still overwhelmed by the turnout and the support. I want to thank everyone who came, made a donation, sent a basket, collected gift certificates, helped prepare in any way and took the time to help us.

Thank you so much to all our elves who came early to set up and stayed late to clean up. Thank you to everyone for your patience with us over the past few weeks while I've been a little "stressed". Thank you for all the cards, letters, checks and "anonymous" donations.

Thank you to the gentleman in Orchard Park, a perfect stranger, who felt compelled to help Chase and sent $500.00 after he opened the paper to Chase's story.

Thank you Paula, for making me cry. I was so touched by the bouquet of daises and roses placed on the bar with candles in Trey's memory.

Thank you Michelle, Toby, Paula, Mike, Patty, Tom, Jake, Erin, Merrie Jo, Clark, Dawn, Clark's Dad (sorry I don't know you're name!), Jamie, Sabrina, Austin, Alex and Justin for being our "Special Elves".

Thank you to the Flyin' Blind Blues Band...Everyone LOVED you! Thank you to our rockin' DJ!!!

Michelle, Toby, Paula, Mike, and Jake, Thank you for the idea, the planning, the preparation and the friendship involved in putting this benefit together. Thank you for everything, the yelling, the laughing and the crying. You can't do that with strangers!

I will post pictures when my eyes are more open....

THANK YOU

Slight change in plans...

2009-03-11T07:30:00.002-04:00

We had to put off yesterdays upper GI and esophagram, Chase has a bit of a bug. We hope it isn't RSV again. He made it through the entire winter without even a cold after having RSV three times last year...

We took him to the pediatrician yesterday, she put him on amoxicillin (just in case) and had a home care service deliver a suction machine yesterday afternoon so we can help him keep his throat clear. He tends to bring a lot up from his lungs and then can't clear it.

We will reschedule the tests as soon as he's feeling better.

Have a great week everyone!

Surgery Consult

2009-03-05T12:52:00.002-05:00

Sorry, I was worn out yesterday or I would have updated sooner. We met with the surgeon in the morning and to make a long story short, next Monday Chase goes back to Children's for an upper GI and an esophagram, then some time next week he will wear a pH probe up his nose, down into his stomach for 24 hours. After we get those results surgery will be scheduled. The question at this point is whether or not to do the fundoplication. The surgeon said that because Chase is already so low tone, doing that particular procedure could put enough pressure on his lower esophagus to make swallowing impossible for him permanently. We think it can be avoided and are hoping to be able to do a Gj tube surgery soon. He also told me to stop thinking of the feeding tube as a temporary thing.

One day at a time, one test at a time....

On the 20th we have someone from the county along with an architect from UB coming to plan out the ramp for the front of the house. I'm excited to be able to roll him out easily for walks when the weather gets nice. I know the grading rules say it has to go out a foot for every inch it goes down, I have images of this thing going WAYYY out into the back yard, LOL. Or having to zig zag multiple times before we reach the cars. We'll have to leave an hour early everywhere we go just to get down the ramp, LOL...

Well, tomorrow is his 18 month check up with the pediatrician. It really seems kind of pointless...they haven't seen him since any of this exciting news, and I'm not sure they'll be all that happy to see us, LOL. I think we scare them!

HAVE A GREAT WEEKEND!

Today's Appointment

2009-03-03T18:57:00.002-05:00

We saw Dr. Senn today at the Developmental Center. He's pretty much the one over seeing everything right now. He spent two hours with us and gave us a few projects to work on until we go back to see him 3 months from now. The first starts tomorrow with the visit to the surgeon. Chase lost a pound since he was last at Children's 3 weeks ago. Dr. Senn would like Chase to have the feeding tube and have him on an overnight schedule where he's on a continuous feed overnight via a pump and then bottle fed during the day. He said Chase's brain just doesn't give him that craving for food that he needs.

Next mission...to see neurosurgery on the 19th (we rescheduled the feeding clinic). Dr. Senn wants some tests run to be sure there is no problems with *blood pressures in the brain, oxygen levels in the brain, atrophy in the brain, excess pressure in the brain...etc. etc...so he's requesting an EEG, a more detailed MRI and who knows what else.

From there he wants Chase to see a Doctor (not a therapist) that specializes in bracing. He wants special braces for Chase's ankles to give them as much support as possible. (Maybe he has visions of Chase maybe walking on them one day???) He also wants his back looked at for possible bracing. He thinks the kinesio tape is too weak to support his posture.

Basically, after neurosurgery, he said if we still don't have answers, he said we can go all over the US talking to neurologists, but we still may never get a diagnosis. Then he assured us that he and everyone he talks to is extremely "intrigued" by Chase. Hm, that just reminds us of when Trey was the most interesting case in the NICU...

WE WANT TO BE BORING!!!!!

OH! He DID say that Chase is exploring, reacting, and responding age appropriately to commands etc...told you he's a genius...cerebellums ARE overrated!!!!! :*)

XOXO~G'NIGHT!

Our March Calendar

2009-02-27T17:07:00.002-05:00

If I disappear for a brief time, or forget to update, feel free to remind me to update after any appointment!

(Keeping in mind that doctors appointments are on top of the usual:
M,T, Th Physical Therapy, M & F Occupational Therapy and T & Th Vision Therapy...)

Where Chase and I will be in March :^)

3rd~ Developmental Clinic @ Children's to discuss the MRI findings...

4th~ General Surgery consult @ Children's to discuss feeding tube
AND
Early Intervention IFSP 6 month review

(I'd better mention the 5th is Dave's Birthday!)

6th~ 18 month check up (first visit since MRI and all other excitement)

9th-13th-One day this week we will have an appointment for someone to come out and look at the house to start the ramp project

19th~ Feeding Clinic at Children's to make final feeding tube decision
AND
Grandpa Handy's Birthday!

24th~ Pediatric Ophthalmologist for his 6 month follow up

28th~ Chase's Benefit

I think we'll take April OFF!!!!!!!!

It's funny really, we've gotten so close with Chase's Early Intervention Coordinator that Alex is at her house, playing with her son as we speak! LOL Life is funny...and very...very busy........

TAKE CARE!!!!!

A bit of good news...

2009-02-21T10:50:00.003-05:00

Chase had a scintiscan last week (to check for gastro esophageal reflux). The doctor at the feeding clinic was afraid Chase may have had reflux to the point that it was causing him to take stomach acid into his lungs...NOT the case. He did test positive for reflux, but only half way up his esophagus. No aspirations. He started taking Prevacid last night. Maybe he will start sleeping through the night again!

Also, on Thursday this week he had a Nuclear Renal Scan. He had this because he has had two kidney infections this year and they were checking to see if he had any scarring (damage) on his kidneys. If he had shown scarring we would have discussed fixing his ureters surgically to stop the infections. Our friend Allyson (the Nurse Practitioner in Urology who has been GREAT with us)called yesterday to say his kidneys are perfect and beautiful. Maybe the renal reflux is getting better on it's own!

It's fun to get happy news once in awhile!

Benefit Info...

2009-02-16T10:29:00.004-05:00

Michelle asked that I post this for our local friends...we really, really appreciate all that she has done, and continues to do for us. Her and another friend, Paula, are going above and beyond anything I could have imagined...

http://benefitchase.com/

http://apps.facebook.com/event.php?eid=50909453701&ref=mf

Please join the cause and spread the word!
http://apps.facebook.com/causes/218778/18546950?m=0895cafc

xoxo

Just a few new pics I love!

2009-02-09T10:14:00.000-05:00

HOW CUTE IS HE?????

New Wheelchairs, new ramps and Feeding Clinic Appointments, OH MY!

2009-02-06T07:51:00.003-05:00

Chase was seen at the Children's Hospital feeding clinic this morning. His intake has gone down to half of what they want it to be and he is becoming more and more "congested" after he has a bottle (he still doesn't do any solids).

We are taking him next week for a scintiscan to check for reflux. On March 4th we have an appointment with a surgeon to learn about G-tube surgery which would also include fundoplication (http://pedsurg.ucsf.edu/conditions--treatments/gastroesophageal-reflux/fundoplication.aspx ). After this appointment, which is pretty much to educate ourselves on the pros and cons of the surgery, we will go back to the Dr. we saw this morning and decide whether we want to go ahead with the surgery. The doctor saw Chase eat a very small amount and heard the gagging that followed, he said this made him suspicious of aspiration. He did have a swallow study a few weeks ago, but he wouldn't eat much for it so they didn't get good results.

Because Chase is low weight right now he said we have to be careful because "Chase has very little reserve and if he got sick, he could get very sick"...this only makes me want the g-tube more. I went in there today ready to demand one (sounds odd, but we need to build the little guy up). The doctor said both cases have pros and cons, we keep feeding him as we are and he could end up with a serious case of pneumonia. If we do the surgery, there are the risks that come along with that as well.

On a fun note. The rep from Buffalo wheelchair came this week. We have Chase's paperwork underway for his "supercool wheelchair" and while we wait for it we get to keep the demo chair she brought which is nearly identical. We tested it out and took it to the hospital this morning (SQUISHED it in the trunk! LOL) It is SO nice.

We also have begun paperwork to get a ramp added to the house. I just learned today that we can get one to go over the stairs that wouldn't be permanent. I was very happy to hear that because we rent and I didn't want to make permanent changes. Our landlords said we can do whatever we need to, but this would just be easier.

Now we are on the market for a van, then Chase's Early Intervention coordinator is putting in MORE paperwork to get it modified for the wheelchair with a ramp etc...

BUSY BUSY BUSY! Hey, things are moving in the right direction, we're just trying to keep up!

He HAD a cerebellum

2009-01-25T13:32:00.003-05:00

We are more confused than ever. I spoke to my perinatologist on Friday...she looked back at my ultrasounds. It WAS there. Ok, so where did it go? Does this mean it's progressive? Degenerative?

I tried to contact Chase's neurologist, but he won't be in the office until tomorrow. So we wait.

I will let everyone know as soon as we know anything, even if it doesn't make sense!

God Bless!

Neurology Appointment

2009-01-21T14:20:00.000-05:00

First of all, thank you so much for the wonderful emails and phone calls that are so full of support! Those really mean a lot to us.

Chase had his Neurology appointment at 9:30. It took about 2 hours and we don't have a ton of news. We saw two doctors and they've asked us for time to allow them to research and try to work with genetics in coming up with a diagnosis/prognosis. Today's doctors felt strongly that we will eventually find a syndrome of some sort through the genetic testing. They said the only other thought they would have would be a stroke in utero but the rest of his brain would show a lot more damage.

The conversation started before they had looked at the MRI films and the Dr. had said radiologists can "miss things" and chances are there is SOME cerebellum. Then they went to look at the films, came back a half hour later saying that the space that is supposed to be between the cerebellum and the rest of the brain is there, but NO cerebellum. Just that pocket of fluid.

Our hope right now is that the rest of his brain is doing some compensating. It can't do it all obviously, but he's doing very well under the circumstances.

We go back to the Neurologists in 3 months, unless something comes up first. They know we'll travel anywhere for the best treatment, and took no offense to it, they said they would do the same for their families.

Now we wait for DNA tests (could be in as soon as next week) and the Doctors to try to put some pieces together. If it is a syndrome, we'll know much better what the future holds. For now we have to be patient. The doctors said Chase is "fascinating". They used to say the same thing about Trey. I can't wait to be boring again, hopefully soon...well, boring in an interesting way at least.

Sorry I can't give you more information. As soon as we know anything we'll absolutely let you know.

Neurology

2009-01-20T17:04:00.001-05:00

Tomorrow is the appointment with the neurologist at Children's Hospital. Please pray that there is no more news to surprise us with. I'll update as soon as we get home!

MRI Results, the Bumpy Road goes on...

2009-01-14T21:27:00.000-05:00

Chase had an MRI last week with the understanding that he has some mild CP. Tuesday morning the Dr. from the developmental clinic called me. His words were "Chase's MRI was much more involved than we expected and very hard to explain". Between my conversation with him, and an emergency visit this morning to the angel of a doctor, Dr. Robinson, from genetics, I can explain it like this...Chase has what is called cerebellar hypoplasia. This normally means a small cerebellum that is underdeveloped. Chase likes to get lots of attention though...and his doctors so far agree, they have NEVER seen this...but he has NO cerebellum. Instead he has an empty pocket of fluid at the back of his brain. The MRI report says "absent cerebellum with small pons" for our doctor friends to understand.

Dr. Robinson said this morning that had he seen the MRI without knowing Chase, he would not be surprised if it were the MRI of a child in a vegetative state. He also said Chase is "paradoxical"...he is doing way too much to fit the MRI...he has personality, laughs all day, says mama, dada, baba, hi....and loves to growl...lol

He won't be able to walk, the cerebellum controls balance, but we have a super cool wheelchair coming our way in the near future. We see ramps and larger vehicles in our future.

As far as intelligence, the general feeling is since we Brittons are so smart, he has hope. It is a good possibility though that he is progressing now, but will reach 3 or 4 and plateau. No one knows....so far no one in our area has seen this...they can't give us a prognosis...life expectancy...anything.

I can't believe I'm having to email this, but everyone will know eventually, so I thought this was the easiest way.

Dr. Robinson did lots of DNA tests this morning that may give us more information, and we see Neurology next Wednesday. Hopefully they will send us wherever we need to go in the country to find someone familiar with this.

My pregnancy had NOTHING to do with this. All of this would have occured between 8-12 weeks of pregnancy (brain development and vision as well). Honestly I was happy to learn that I didn't hurt him.

We will update as we know more, just remember, he is a gift and SOOOO loved!!!!! I promise that will never change, we are so unbelievably happy and blessed to have him.

Happy Holidays!

2008-12-29T20:43:00.002-05:00

I hope you all had a wonderful and peaceful Christmas!!!

Sorry it's been so long since an update, but it's been a little busy here. Chase is being kept busy with vision therapy 2x/week, OT 1x/week, PT 3x/week, plus he's seeing an OT at Children's that specializes in feeding issues every few weeks. Oh, add in the doctors appointments and trust me, we're busy! LOL

I guess I should back up a little so this all makes sense. Chase is still quite delayed in motor skills (he is now 16 months and gross motor is at a 6-9 month level). Most of this is due to his vision, but some is caused by spastic diplegic CP. His developmental specialist has scheduled an MRI for January 8th to see exactly how he is affected. The Dr feels they will find minor amounts of damage, but admits we could be surprised.

Because of the CP he is having some swallowing problems (NO aspirations! yay!). He has hypersensitivity when swallowing (gags easily) then once food hits his throat he has a delayed swallow (he doesn't know to clear his throat when there is still food there). He had a swallow study a few weeks ago and will have a scintiscan scheduled soon (to check reflux). Basically it means right now he's only eating (drinking) whole milk and high calorie Pediasure. BUT he's too skinny, the little peanut. He just hit the 20 pound mark after being 19 pounds for months on end.

He isn't crawling yet, but drags himself around now, LOL, on his belly, with his arms. His PT got him a special walker and hopefully he'll be up and running around soon. He will be in a horse riding program as well as swim therapy in the Spring to help his core strength...

One thing I have to add is that he is right where he should be with speech development. This tells everyone that cognitively he should be just fine, brilliant in fact!

He is STILL the happiest baby ever, loves to tell jokes (that only he understands of course) and LOVES to make all of us laugh.

We will update for sure after the MRI...

HAPPY NEW YEAR!!!!!

Chase's new "Smarty Pants" image

2008-10-22T18:33:00.002-04:00

2008-10-22T18:12:00.001-04:00

Ok, it's been a few days since the BIG appointment, LOL, here's the update...The feeling is still that his field of vision does not extend beyond 3 feet and we don't know if he has total central OR peripheral vision at this point. The good news is this...he's using BOTH eyes...and he is very nearsighted in the right and somewhat nearsighted in the left...so our little man now has GLASSES! He may not see a lot, but what he can see is clearer than it was a week ago.

He loves his glasses. He has never taken them off yet. Hopefully we'll begin to see some leaps and bounds in gross motor skills with this new development. He is getting PT 3x a week, vision 2x a week, about to start OT 2x weekly, and is starting with a special ed. teacher here at home to prepare him for the visually impaired preschool.

I guess that's it for now, we'll keep you all updated!!!

Happy Halloween everyone!!!!!

BIG appointment tomorrow!

2008-10-13T18:16:00.002-04:00

Just a little vent to say I won't be sleeping tonight! Chase goes to see his pediatric ophthalmologist tomorrow morning at 9am. I can't stand the wait. We haven't seen him for 6 months and I'm hoping he sees some improvement tomorrow. I just wanted to let everyone know, in case someone reads this tonight you can be anxious with me! LOL I'll update in the morning!!!

General Update

2008-09-27T10:49:00.003-04:00

Happy Autumn everyone! This is my favorite time of year (I get to start planning the annual Halloween party!).

Little Alex turned 11 two days ago, I can't believe it, an 11 year old and a 1 year old, LOL. Yesterday our little angel would have been 2. We took 2 balloons and a weighted fluffy ducky to the memory garden and left them on his brick. It looks so sweet! We brought home 4 more balloons (one for each of us) and attached a card with messages from each of us, took them into the backyard and released them. It was a very nice "Trey day". Hard, but nice.

Alex is homeschooling this year and LOVING it! We are using an online program, Virtual Learning Academy, plus a ton of our own workbooks etc. It's perfect for him and he's doing very well with it.

Chase is still getting LOTS of visitors...Vision Therapy, Physical Therapy, Occupational Therapy, and he is about to start working with a Special Instruction Teacher to get him prepped for preschool.

I guess that's all I've got for now, nice and basic, nothing too exciting going on!

Take care everyone!

Corning Museum of Glass, Alex's 11th Birthday

2008-09-26T14:31:00.001-04:00

Chase's First Birthday!

2008-08-30T00:17:00.001-04:00

It's almost the BIG DAY!

2008-08-20T07:09:00.003-04:00

I can't believe "micro man" is almost a year old! He seems too little to be so old, LOL. Chase has kept us busy this summer. For now we have his vision teacher, Melissa, coming to the house twice a week, Kelly, his physical therapist also comes twice a week, and we are now adding occupational therapy (for fine motor skills) twice a week as well as a special ed. teacher (I don't know how often yet) to help him get ready for preschool. I think I'll remove our front doors and add one of those rotating doors!

He's doing very well in his therapies. He is starting to eat braille books (this will eventually lead to reading them...we hope). He is sitting alone for up to 3 minutes, and is on the verge of crawling. He babbles nonstop, laughs all day long, and is one happy little guy.

Alex is getting ready to start Homeschooling. I can't wait. We're going to use an online program for most of his courses and bought the other coursework last weekend that he'll need. Our official school uniform is either pajamas or big sweatshirts =-).

Well, I just wanted to give a little end of summer update. Hope everyone is doing great, I'll post birthday pics next week!

Our Baby is getting BIG!

2008-07-13T14:26:00.004-04:00

It's finally summer!

2008-06-29T22:29:00.003-04:00

Hi Everyone,

Chase is having a great summer so far. We got away two weeks ago with Traci's family to Southampton, Ontario on Lake Huron for a long weekend. It was nice to escape for a few days!

Our schedule is filling up with home visits with therapists. He now has Physical Therapy twice a week, his vision teacher comes twice a week, he starts Speech this week to help with solid food feedings, next month he starts Occupational Therapy as well as Orientation and Mobility with someone from the Preschool for the Visually Impaired. I get the feeling they'll tell me to move my furniture around, LOL. They will also start getting him "pretrained" for a cane.

We are being added to a waiting list to adopt a retired guide dog...(Dave hasn't actually agreed yet, but...he will)...this will get Chase used to being around a very well trained dog. Service dogs only work up to the age of 10 and then retire. So he could start with a pet and eventually have a working guide dog.

Alex finished up Elementary School last week. He received an Academic Achievement Award so we got to go to an assembly last Wednesday. He was SO PROUD! (And handsome I might add.)

I hope everyone is enjoying a fun filled, relaxing summer!

Take Care! XOXO