Christmas Day (and Eve) Pics

Merry Christmas!

An excited Chase!

Grandpa and his "granddaughter", Riley.

My boys, LOL!

Wishing Everyone a Wonderful New Year!

Merry Christmas!!!

Love~Chase, Alex, Mom and Daddy!

H1N1

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!

G-Tube update 11/4/09

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

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

(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!

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

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

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

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...

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

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

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!

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

Developmental Checkup

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...

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

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

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"...

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!

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

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)

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!

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!

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

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!!!!!!!!!!!!!!