Tuesday, November 16, 2010

Swallow Test & Eating Update

Blake had a follow up swallow test last week and the results were both good and bad. The good news is that he is doing excellent on liquids from honey-thick through purees to pudding-thick. The bad news is that he can no longer have thin liquids, including his absolute FAVORITE - Water. How sad! We tried thickening it this week but it was a no go. Somehow water looses its appeal when it is the consistency of slime - haha! He still gets it through the feeding tube and sneaks a few drops in the tub (I have to get video of that to share it is hilarious...he dips his fingers in and then licks off the water. Super gross but funny!) so no worries about deyhdration.

He has been a rock star at the feeding clinic though. He now gets two meals a day by mouth. We have made it through all kinds of fruits, pudding, yogurt and a few grains -yipee! But he is not a veggie fan. Looks like he has his mama's sweet tooth! Sweet potatoes, carrots & squash I can easily mix with the pudding to make a yummy (really) mix that he likes but I was at a loss with the green stuff. If any of you have picky eaters out there I learned a trick...mix them with applesauce or pureed pears!! It sounds quite discus ting but it seems to work. Today he had a vanilla,(since that is the flavor of his formula)applesauce, and peas shake. I would never have ordered it in a restaurant and could not believe it when he downed 4 oz - a new record!! When I tasted it it was surprisingly not that bad. Tomorrow we are going to try pears & green beans. Wish us luck!

Wednesday, October 27, 2010


So Blake started preschool on Monday. It is amazing what a difference 6 months can make because when we started talking about preschool around his birthday I thought there was NO way that he or I could take it! But as it turns out by the time all of the forms got approved and he actually started we were both more than ready :) Here is a photo montage of the morning:

8:00am - "Why Mom, why so early?" Haha - like Mama like son!

8:15am - All dressed, backpack packed, ready for photos. It took a few tries to get a smile, but well worth the wait. This picture might be one of my very favorites now!

8:20 - Bus is here! He was not quite sure about the lift.

8:23 - "Ok, this might be fun. I can see much more from here than in the Jetta!"

8:50 - Making the walk into the classroom with Miss Cathy.

9:05 - Settled in, ready for a day of play!

Miss Cathy said that he had an excellent first day and the bus attendants kept saying that this could not be his first day because they always cry on the first day. Not our Rock Star!! For his art activity he painted a pumpkin and it was so cute to see the blue and red paint stuck under his fingernails when he got home. I think the most suprising thing was that when he got off the bus at 12:30pm I thought for sure he would be asleep or close to it - not so! He was so wound up that it took me almost an hour to get him relaxed and ready for a nap. Such a Champ!

Monday, October 11, 2010

Lucky Seven

On Saturday Bryan and I celebrated our 7th Anniversary!! Amazing how time flies. We had a great day. During the day we took Blake to a nearby outdoor nursery that has a small fall festival to look at pumpkins, etc. Then since it was pretty warm outside (yeah for October weather in VA!) we picked up an icecream cone before heading to the park. Blake went down the slide for the first time by himself which was a big step for all of us. Blake's nurse came to watch him for the evening and Bryan took me out on the town for dinner and a movie. It is tradition that we go to P.F. Chang's and it did not dissapoint! We got to stay out until midnight which is a first for us in the last few years and it made me feel like a teenager again. Simple pleasures.

Thanks baby for a great day and a wonderful life together. I love ya tons and tons!!

Wednesday, June 16, 2010

Spring sprung

If a pic is worth 1000 words then does 64 pics make up for not posting anything for 9 months? Well it can't hurt, right!! So, here is a link to our picasa site with pics of the things we have been up to since the blizzards blew out this February.

Bryan's B-day
Visit from my sister
Maymont Park in Richmond
Harper's Ferry
DC National Zoo
Blake's B-day
OBX with Friends


Monday, September 21, 2009

Two more down

We spent another full day in the hospital, but we are making progress. B had a double dose with two procedures today. The first was to get tubes for both ears - a really basic surgery that should help with both his hearing and chronic infections, yippee! The second was to replace his feeding tube because he has already grown out of the one we did a month ago. It was really good timing too because when they went to put the new one in they found out that the old one had slipped almost completely out and was nearly back in the stomach which may have been adding to the increased reflux he has been having. It was not as slick as we would have liked, but this time he was sleeping soundly and should have no memory - thank goodness! So in a few days when his ears feel better and the outside and inside of his tummy aren't bothering him, if he can't get a good night's sleep, I don't know what will do it:) Since Grandma gets him all next week we are keeping our fingers crossed that he is an angel so that she will volunteer to give us a break again soon!

Thursday, September 17, 2009


So, I am not sure where the past 2 months have gone. Looking back, it seems we spent half of the time having fun with family and the other half on dumb doctors...

Blake and I took a trip to UT at the end of July for a family runion and had such an awesome time seeing everyone. My family celebrates with all sorts of fun and silly activities like archery, a fly-off, a pinata, watching movies projected on the garage door, skim boarding in the canal, etc. and I love it all! We also got to go swimming at aunt Jill's so it was great to catch up with the Shupe side as well.

After we got back to VA B had a procedure to switch his G tube to a G/J tube (which just means that they add extra tubing inside that allows the food to bypass his stomach and go straight to the intestine). I have to say it was one of the WORST things we have ever had to do to/for him. First off, they did not use anestesia - who does that?? It was suppose to be a quick 5 minute thing, but after at least a half hour of him screaming they stopped to get another doctor to assist and we were finially able to get them to relent for at least some local numbing. I can't even explain how angry I was. I just kept thinking how they would never do that to an adult, so why to a poor kid who has already been through so much? I don't know if I can blame it all on that incident, but it has really effected his behavior. He is now scared of EVERYTHING - vaccum, hand mixer, a fan. He just freaks out at the drop of a hat and it breaks my heart everytime. To add to his challenges, his digestion has gotten worse instead of better. First they thought it was a new food intolerance, then it was a bug, then the medicine used to treat the bug, and on and on. I frequently wish that I could just explain things to him, but then again I have a hard time understanding it myself and it is hard not to loose hope that SOMEDAY this will all be managable, if not gone!

On a more positive note - we did have another miracle come out of all of this. When we had to change his formula, it was of course to one that was even MORE expensive. Our insurance denyed our claim again (since he does not have a "specific inherited metabolic disease" - how lame is that? He can't swallow - how much more inherited does it get? anyways) and we honestly could not see any way that we would be able to afford it. I know most people might not post the details, but as you will see it is outrageous. A case of the food costs $169. Seriously. AND a case only lasts us 6 days. So, we were looking at almost $850 per month for this stuff. What?? So, on to the miracle. We found out that Nestle is the manufacturer and they have a program where you can qualify for up to 2 free cases per month. They do it 6 months at a time, so two days later UPS delivered 12 cases of formula to our front door ($2028 worth!) THANK YOU NESTLE!! All I could think of was "like Mana from Heaven".

Sunday, July 19, 2009

1/4 Century

Its not very often that you get to celebrate turning 25, but I have to say this has been a great way to do it. We had a bunch of friends over yesterday, more celebrations today, and tomorrow I get to have another party with the whole family - Yippee!! Thanks to everyone for making me feel so loved. I have to admit that it was a pretty shameful attempt at the candles though, I guess there just are too many :)