Thursday, February 25, 2010

Pinewood Derby and an interview with Nana

Wyatt's scout pack had their pinewood derby on Saturday. The kids were all excited and slightly antsy...anxious to see how fast their cars raced down the track.
The excited boy.

Let me tell you, these little blocks of wood are buggers to shape and construct into what a young child imagines it to look like! Bryan and Wyatt are now skilled in the craft of pinewood derby car making....the design, the shaping, the sanding, the weighting, the painting, the re-painting after said child decides on something different, the detail paint work, the weigh-in, the wheels, another weigh-in, acquiring the accurate weight (removing/adding pieces), the final weigh-in and eventually the RACE!

The track
The tiger scouts receiving their "first pinewood derby" trophy's
Wyatt's car at the starting line (his is the flatter of the two)
Look at that "rocket" go!
Wyatt's car won all four of it's runs and he got 3rd place! WTG, Wy and Daddy!

Maggie is in an after school club called the Young Authors club. In the fall the club members each created and published their own books. Maggie's book was titled "The friends". At the end they presented and read their books in front of all of the members' loved ones. This 'season' the club is creating and publishing a biography of whom ever they choose. Maggie decided to choose her Nana (great grandmother). So, on Sunday it was arranged that Maggie would interview Nana about her childhood, her teen/young adult years, as well as her present life. She eagerly went back to the club Monday after school and started writing. I can't wait to hear what information she chooses to use and how it turns out!
Nana and Maggie after the interview
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Monday, February 22, 2010

Who are the DeStephano's, anyway?!?!

Part 2.

Bryan and I have three children.

Margaret Eden was our first born who stole our hearts from the moment we knew she was on her way. A very sweet and happy baby and toddler. She's now 8 years old and is growing up so fast! She's in 2nd grade this year and LOVES learning. She is very loving, passionate, talented, caring, smart, beautiful, graceful and slightly stubborn (of course....she is my child, after all!) Maggie is wise beyond her years and a bit boy crazy already (Lord, help us!)

She changed.

Wyatt Daniel is our second child who was born only 9 months after our first. He was born at 26 weeks gestation, or 14 weeks premature. He caught us all by surprise (in more ways than you can imagine), but he has fought hard to stay with us from the very beginning. He had a very scary entrance into the world but proved to us all he was stronger than we even thought possible. It is believed that he has a progressive neuro-muscular disease, which causes him to struggle with many different medical issues. We spend much of our time seeing specialty doctors trying to give him the best quality of life possible. He has an infectious joy about him and a genuine LOVE for life...he is very smart and so funny! Wyatt is in 1st grade this year and is enjoying his first year of Cub Scouts.

He taught.

Jilliana Mari is our third child. She was born 3 years after Maggie and Wyatt and was born 6 weeks early. She showed everyone from very early on that she will be doing things her way. She marches to the beat of her own drum, proudly...and yet, she will not be left behind! She is now 4 years old and quite the princess. She enjoys her days with Mommy at home while the big kids are at school. I can think of many words to describe Jilly....spunky, confident, funny, independent, caring, determined, loving, beautiful, smart, and stubborn (and not just a little...she is my child, for sure!)

She healed.
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Sunday, February 21, 2010

Hospital update...

Wyatt had the sweat test scheduled first. This test uses an electrical current to 'charge' an area on the forearm to make it sweat and they use a special collection device which draws the sweat into a very small tube. It takes about an hour all together and it's not painful, per say, but it's not very comfortable (or so we were warned). They are ruling out Cystic fibrosis with this test.

He did great through out and was happy when he was finished, only to find out he didn't sweat enough. So, the lab tech had to call the doctor who ordered the test and asked him what he wanted to do. He decided to just run the blood version....the Cystic Fibrosis gene analysis. The poor guy....he made it through the first hour long test only to also need labs drawn. But he was a trooper, as always. He climbed up on the chair by himself and put on a brave face.

It's now done and over with....and we wait. I plan to call later this week about the results and also ask about the results of the immune studies that they drew several weeks one ever called me about those. I would usually go by the "no news is good news" rule of thumb, however we've done that before only to be blind sided at a follow up appointment with results that were not as expected. Not fun!

After we finished the sweat test and lab work we headed to have the impedance probe placed. The impedance probe is a small spaghetti sized tube/wire that is inserted through the nose and goes down into the stomach. It measures the amount of acidic and non-acidic reflux a person is having and exactly how far up the esophagus it's traveling. Inserting the probe is not fun. Bryan and I have had to insert numerous NG tubes (nasal gastric feeding tubes) into Wyatt when he was a baby....I didn't like it then and my feelings haven't changed now. The impedance probe has a sensor on the end of the tube that makes it little more uncomfortable to insert at first. It was tough, he was scared and uncomfortable. It broke my heart....but I know it needed to be done to figure out exactly what they can/need to do to help him feel better each day. After an hour of the probe in place he didn't mind it being there. He could feel it in the back of his throat but it didn't slow him down from enjoying his lunch....a pancake, scrambled eggs, bacon and apple juice.

After lunch we wandered through the hospital. His first stop was the gift shop where he scored a few fun items, then the cafeteria for drinks and the last stop was the child life room. I wish I had brought my camera along on our walk. Wyatt had a GREAT time playing ping pong in the child life room!

 His eyes are much bigger than his stomach allows, but he was really enjoying ordering anything his little heart desired! He was SO tired come dinner time that he fell asleep very quickly after he finished eating.

That was when all the 'fun' began for Bryan and I. Wyatt sleeps with a c-pap machine due to apnea which is said to be caused by the neuro-muscular disease. He is also hooked up to his feeding tube and receives a continuous feed through the night (during this test they wanted to run it through the night to see the results...we typically run it during the day due to his comfort.) Anyway, the night was filled with seemingly continuous beeping. If not from the pump that was supplying his food, then it was from the c-pap/bi-pap machine. At one point the nurse noticed Wyatt and the bed was soaking wet....yep, we had fed the bed (the medicine port on the side of the tube opened up and it drained the formula out into the bed.) A lot of good that will do during a test that is reliant on him having food in his belly! Oops! After a new set of sheets, a gown change and a change in feeding pumps the beeping stopped from that area.

The respiratory therapists never did figure out the problem with the one point there were 5 RT's in the room trying to figure out the problem. One of them decided "it was only one night, he should be ok." In my head, I was wondering if she would be "ok" if her oxygen was compromised throughout the night and she frequently awoke with her airway collapsed and unable to breath?!? Maybe THEN she would have cared a little more.

The morning came, along with our waiting for the doctors to round.

The probe came out much easier than it went in and we were on our way home. We're very happy to be reunited with Maggie and Jilly! We should hear from his doctor sometime this week with the results and the next step she recommends.
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Saturday, February 20, 2010

He's home....We're home.

Things went ok, considering the circumstances, I suppose.
I'll update with more details at another time.....we're now getting ready to attend Wyatt's first pine wood derby for Cub Scouts! Exciting!
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Tuesday, February 16, 2010

Who are the DeStephano's, anyway?!?!

Part 1.

Bryan and I met nearly 10 years ago.

Strangely, I met his family before he and I met.

It's a twisted web of connections....
His brother was my then church's pastor. His Mother and I first crossed paths at my workplace as I tried to sell her smelly bath and body products. She purchased a pink elephant soap dish for her grandchild.....which is still in use. Bryan and his father sat just outside of the smelly store during that time. And his Mother coaxed Bryan to go into the store after she had left....what she expected him to do, I'm not quite sure. Some months later, Pastor's wife, Bryan's sister in law, just happened to be working at a place that I had become newly employed at. Pastor and Pastor's wife's child, who received the pink elephant soap dish that I had a hand in picking out, also attended said workplace.

Confused yet?

After some time, Pastor and Pastor's wife decided that Bryan and I should, at the least, meet. I'm fuzzy on the why and how this came about. After trying to turn down the offer repeatedly, I gave in.

We met for the first time in church. He talked more to my Father than I. I turned them down for lunch afterward. He called me on Thursday of that week. We went to dinner and a movie on the following Saturday. And that was just the beginning....

We were married 1 year, 1 month and 10 days after we first met.

It was perfect.
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Monday, February 15, 2010

Monday, Monday, Monday!

We had a decently productive day....wooo!

The kids had off of school again. They played very nicely with each other all morning while I was on and off the phone....I count that as something to celebrate right there. No loudly yelling children while I was making phone calls....SCORE!

I was able to schedule Wyatt's impedance probe for this Thursday. I was shocked that they were able to fit him in so quickly! He has a sweat test scheduled for that morning already, so it works out well. He has the sweat test at 8am, which should take about an hour. When he's finished with that we'll travel across the hospital and he'll be hooked up to the impedance probe....we'll be home sometime Friday. I was also able to get his new formula ordered and it's now on it's way to our home as well (shipped via UPS). I'm happy that we'll be able to start it for him this week...less volume each day would be much easier to get into him. I then chatted a bit with family trying to work out schedules/child care for the days that Wyatt will be in the hospital.....that still needs tweaking a bit.

This afternoon we took a tour of the QVC studios with Wyatt's Cub Scout den (and Bryan's....he's the Den leader). It turned out to be a great tour and much more informative than I thought it would be....very nice facility. The boys seemed to enjoy themselves and were asking lots of questions (true, some may not have pertained to the tour in the slightest bit....but they were at least partaking in the activity to some degree. ha!)

The kids are now in bed and the house is quiet. Bryan is watching the Olympics, Wyatt and Jilly are fast asleep and Maggie is, as usual, reading. <3

I think we're all ready for school to be back in session's a scheduled day off for Wyatt due to his modified schedule (he doesn't attend school on Tuesday's and Thursday's) but Maggie will be ready for the bus at 8am! It's time....Jill and I need our daily routine back. When everyone is home I don't get nearly as much done as when they are at school/work. Our routine has been disrupted for so long that I'm actually looking forward to some cleaning! Eeep! (Of course, come tomorrow we'll be missing and waiting for Maggie to arrive home. <3)
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Friday, February 12, 2010

We made it to the appointment....

and back home to tell the tale.

The appointment went ok (I think?!?).
We first headed to the imaging center and he had an abdominal x-ray. Then we trekked to the GI area to see Dr. M-R ...his abdominal x-ray looked good and he was cleaned out well. I think we may have figured out what works for that part of his system, for the time being. ::knock on wood:: That made me VERY happy to hear! I can't help but feel we accomplished something, as far as that's concerned.

Then we started trying to explain his newer issues that he's been complaining "stuck" in his throat, distention, refluxing and swallowing his "throw up", not tolerating his usual night feeds/switching to day feeds, chronic sinus infections, not getting his minimum amounts in, etc. It was rather difficult explaining everything so that she understood how it all fit together....what came first, how long it's been going on, what we did about each of the issues and what did/did not help each, what the other doctors have said, etc. All the while trying to keep each of the kids quiet and say the least, it was a long appointment!

In the end...
-She is changing his formula to a more concentrated type to fit more calories in with less volume.
-He will be admitted (she hopes with in the next week or two) for an impedance probe which will show her how much acidic and non-acidic reflux he is having in a 24 hour period.
-We are doing another 3 day intake count to see what he's actually getting both orally and through his tube.
-He is to have 1500 ml of fluid per day (approximately 50 oz, I think? That's formula and 'free' water combined....through his tube.)
-We will be playing with amounts/rates with his tube feeds more often to see what he can tolerate and what he for sure does not.
-He'll also start getting tube feeds at school.

She discussed trying a GJ-tube vs. a Nissen Fundoplication, but before deciding anything there, we need to see how much actual reflux he's having so we can get a better idea of what would help best. Or if it's even another problem completely. We also discussed possibly adding medicines, "prokinetics", to help his stomach digest quicker....I think in the end it was decided that she would contact the neuro to ask their opinions on trying either erythromycin or baclofen.

The talk of the GJ-tube and Nissen Fundoplication, with the option of trying med's, is where Bryan and I were getting lost. The conversation was jumping all around and oddly, also in circles. I'm thinking we'll take this one step at a time...we have to do the impedance probe first. Then we can clarify the things that we didn't understand fully this time around (and probably discuss even more) at our appointment with her next month.

One day at a time.....
Tonight we're camping out in our living room to watch the opening ceremonies of the winter Olympics....but I can't help but notice only 1 of us is still awake. Hmmmm.
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More snow pictures...snow day #3

We're heading out the door to make our way to Dupont (childrens hospital) to see Wyatt's G.I. doctor (gastroenterology) to discuss our next steps. Wish us luck....both in getting there and discussing what to do for him next!

I'll update this evening again.
Until then I will leave you with more pictures of our incredible amounts of snow.....

Jilly declared..."there is too much snow!" and decided she was done.  

The kids getting a shovel full of snow thrown at them (after bugging Daddy throw it at them.)

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Wednesday, February 10, 2010

Snowed in!

We are snowed in....snow day #2 tomorrow.

So, what's this I hear about global warming?!? ha

School is already closed and Bryan's unable to get to work. YAY! Tomorrow will involve heavy duty shoveling (and, of course, some serious playing). I'm looking forward to the playing part...not so much the shoveling. The biggest nuisance with shoveling is finding a place to put all the snow...after the more than 2 ft that fell 4 days ago, things are already piled so high. Nothing like adding a fresh 12+ inches to that!
A man (we don't know who he was) came along and snow blowed our sidewalks this afternoon. I'm not sure they stayed clear for very long, but it was very nice of him. Thank you much, man with the snowblower!

::whispering:: I have to admit. It's slightly exciting, though......I do love snow days!

It's the blizzard of 2010.
Snow is caked onto all of our windows...
The wind is whipping around like crazy.
Our front door.

These pics are from the snow storm that came through several days ago.....
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Hello, World!

My name is Ashley, I'm the wife to a wonderful husband (Bryan) and the mother of 3 children (Maggie, Wyatt and Jilly).

I hate to say it, but I'm not sure what to put in the first post of a blog! I know, how lame....make a blog and the first post is already a dud. This bodes well, doesn't it?!

Stick with me, can only get better!
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