Team Hoyt, You Amaze Me

http://www.values.com/billboards/16-Devotion

This story is so inspiring to me.....on so many levels....I am in awe.

Some Splainin To Do

Today, the medical staff at Inova Fairfax Hospital completed the latest MRI without a hitch (it also helps to be the first appointment of the day...6:30am). The idea of Lewis waking up scared and panicked in the tube had me really nervous. But with the anesthesia he was knocked out for the count and stayed asleep for the entire time...it made me cry to be there and hold him as he fought the gas mask before they could get the tube down his throat for anesthesia...I'm supposed to protect him right?... I am so relieved everything went fine.

Didi and Lewis waiting for the MRI

LJ is doing just fine. Noodles came home hungry but tired. Everybody is resting now.
Normally we should be receiving a call from the neurologist with the results after the weekend however he is on vacation(talk about waiting on pins and needles). So we have an appointment on September 9th to meet with the neurologist and get the interpretive part of the evaluation. We are really anxious to see another view of LJ's brain and learn more about the exact centers that are affected. He hasn't had an MRI since he was 3 months old. If there are changes and there seem to be improvements we would be so elated!!! But we have to keep things tempered. Doctors (sorry family, no disrespect) most certainly don't have all the answers, and the brain is still largely a mystery. Nobody knows for sure how Lew's little brain will heal. I am so happy that this part is over though!

Dog Days of Summer

The Week in Review...Not So Briefly

Today I had a dentist appointment and LJ had an appointment with the Developmental Pediatrician. Since neither was particularly close to my office, I made it a 3 day weekend. Now that we're back home, Jenn has asked me to make a "special guest appearance" on the blog. Last week was pretty eventful, so it shouldn't be too tough. I'll try to keep it reasonably brief.

Last Week:
Tuesday -
I found out that I passed the 3rd and final level of the CFA (Chartered Financial Analyst) exam. Hopefully this will be good for my career. It will definitely be good for my schedule in the springtime (when all the studying occurs) and for our family, since Jenn and both sets of grandparents have been picking up all my slack for the last few years, literally hundreds of hours of studying. It was a huge team effort, can't thank you enough for your help. Thanks also to my friend/mentor/boss who pushed me to enroll in the program and supported me throughout. (No more "Oscar" speeches, I promise)

Wednesday -

Jenn and Nate adopted Tango, a (nearly) 7 year old Weimaraner. Then Jenn called me at work to fill me in. Thanks to my co-workers for alertly defibrillating me when my heart stopped from the initial shock. (This is only a mild exaggeration :). There's a lot to say on this topic, so we'll dedicate another post to Tango soon. For the time being, you should know that Tango is smart, loyal and handsome. Having him around has made Jenn incredibly happy and I'm 100% behind the decision.

Thursday -
Recovered from Wednesday. Spent shocking amounts of money at the vet and the pet shop. LJ gets his first wet one on the lips. From Tango. Jenn and I go on a date to the Majestic. Great day.
Friday -
My birthday. Bad news: I'm older. Good news: Jenn & Nate make a fantastic chocolate cake. A couple of Nate's buddies and their Mom came over for dinner and cake. A good time is had by all.
Afterward, Jenn was venting LJ (attaching an open syringe to his g-tube button, allowing him to 'burp' when gas makes him uncomfy) . Usually, venting causes some stomach fluid and gas bubbles to back up into the tube/syringe we're using to vent him. Most of the time, he's almost instantly more comfy. On Friday, there was some blood coming up too, which we'd never seen before. Interestingly, LJ was calm and comfortable within a few minutes, but we were pretty concerned. After a few calls, we were off to the ER.
As emergency room trips go, this was a very smooth one. LJ was admitted quickly and he was very well behaved. The diagnosis was Gastritis (inflammation of the stomach lining) and the solution was an increase in the dose of Prevacid (antacid) and a prescription for Carafate, which apparently forms a coating over any ulcers until they heal.
We got home sometime in the wee hours of the morning with a very sleepy boy and a tremendous sense of relief.

Saturday -
All 5 of us (Tango included) have a great visit with Uncle Kenny and Cousin Dana, who were in town to visit Et. Jenn and I get the impossible luxury of a second night out in the same week, this time with friends, at another great local restaurant.

Sunday -
All five of us collapse in a heap and sleep most of the day, except for a trip to the playground...

Monday -
Today's main event was a trip to visit a Neurodevelopmental Pediatrician (NDP) with LJ. The purpose of the visit was to assess LJ's progress so that the NDP can make suggestions to help us optimize LJ's care. It was a good visit, well over an hour. We liked the Doc and LJ did very well - he was awake and alert and went along with all the tests pretty well. (Sometimes these visits can be very frustrating if LJ's not in the mood to cooperate - the Doc can't really evaluate him).

There were a lot of positive take aways from the visit. LJ was very social and engaging - lots of smiles. He also did reasonably well on most of the tests. When he reaches for things or reacts to stimuli, his movements are slow, but deliberate and pretty accurate. His motor skills are behind, but they haven't lost more ground over time, the doctor thought he was doing a lot of things at around a 7 month old level - about what you might expect for a 10 month old who lost out on 3 months of development.The Doc will write all this stuff up for us along with a number of recommendations for LJ's overall treatment.

Unintended consequence - Jenn and I went through the main points of Lewis' medical history with the NDP interjecting lots of questions about his behavior along the way. We both came away realizing how far LJ's come. When he's smiling, kicking and cooing, it is easy to forget the NG tube and the heart rate monitor and the lethargic baby on the seizure meds...Things aren't such a picnic today, but they sure are compared to 6 months ago. Helpful to remember that, every now and then.

Happy Birthday, Josh

Happy, happy birthday Josh. What an amazing daddy/hubby you are! Many wishes for more wonderful, happy years together surrounded by friends and family. Thank you for sharing all the chaos with us. You certainly deserve a LOT of celebrating! I think this year is going to be great. Congrats and adventure on. The ride keeps on getting better...or so I hear!#?

Hey, batter batter

I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!

~Dr. Seuss

Is It Friday Already?

I think LJ is really able to see things so much better. He is just such a different baby!He is making tiny bits of progress eating rice cereal from a spoon. But he still prefers to eat from our fingers. We have lots more work cut out for us but I ran into a very supportive mom at the gtube clinic who gave me lots of helpful information. Her son, 2 years old, was there to get his gtube taken out- he'd learned to eat orally in March and hasn't used it since! I'm going to call one of the feeding specialists that she said worked miracles for them. Of course, she's so good she doesn't take insurance so we'll see whether she'll even have time to take our case. Encouraging news though. Let's take a look at our week....

Number of visits from the Physical Therapist- 1
Number of times Lew smiled- 46
Number of times he had Aquatic Therapy- 1
Number of visits to the Gtube Clinic- 1
Number of visits from the Occupational Therapist- 2
Number of ounces gained since last week's visit- 9
Number of times Noodles reached for my hands to pull himself up- 8
Number of times he tasted avocado- 5
Number of times he wore his new hand splints- 4
Number of visits from the Speech Therapist- 1

When does the fun ever stop?

Noteworthy. Sorta.

This post is a bit random. But it's mostly about our farm share and a tiny update about Noodles. Josh had a business trip yesterday so we were flying solo again. I had to take LJ in the afternoon to Dr. GI because his gtube wasn't fitting snug again (note: we were just there last week for the same problem). They diagnosed the problem as granulation tissue. Essentially the skin tries to re-grow where the hole is because it thinks it needs to regenerate. In most cases this would be a good thing, but for LJ it means that his grossness can leak from the edges and it's uncomfy. It burns. So the nurse used a silver nitrate stick to burn off the granulation tissue. We have to go back next week to get the same procedure done. I think it hurts me worse to watch then it actually hurts LJ. He now weighs 17 pounds!! Nate was a very good boy during the appointment. He made a choo choo train out of all the chairs in the waiting room! Hey, it kept him busy:)

On the food front, we have been given a Rx for a special, heavy-duty formula that packs the nutrients and calories in. After wrangling with the insurance company (they won't pay for it even though it is medically necessary and it's prescription only) we found a way through Medicaid. The month's supply arrived earlier this week. Also arriving earlier this week was our farm share.

One of the best things about the summer is our farm share. I look forward to the challenge of making something with all the goodies that arrive. Some veggies I have never cooked with before. Others are clear favorites. Well, tomato season is upon us! You say tomato, I say tomato (okay, that doesn't really work in writing since the spelling is the same). With the abundance of colorful , delish tomatoes we have been making summer favorites such as: Greek tomato, cucumber and feta salad, tomato pie, bloody marys!@#$, gazpacho, and roasted tomatoes.

And since Nate decided NOT TO NAP yesterday after LJ's appointment, I suggested we bake a cake to distract him...and so that he didn't destroy the furniture! So I figured I ought to do something with the plethora of zucchini we got from the farm share. Nee the Zucchini Chocolate Chip Cake. He loves to "crack the eggs". After we dumped them into the batter he smiled from ear to ear..."Now let's see how this works. Uh. K. We have to push this button on, mommy." We sprinkled a little cinnamon-sugar on top of the loaf pan before we put it in the oven. The epicurious recipe didn't have this step but I think it goes really well.

Other zucchini creations have involved zucchini pancakes, zucchini and corn succotash, the summer favorite of simple grilled zucchini. But in the end, last night I cheated. And since Josh was out of town, I took both boys down the street for some pizza. I gave LJ some of the baked pizza dough the restaurant serves as bread right when we arrived. He just waved it around with his hand until it dropped in his lap. Then as if on cue, Lewis started smiling. A lot. And then his face turned red. And then I knew what was going on. The pizza hadn't even arrived and he was working on a BM! Just my luck. We had to eat and run. Good thing I had some tastey cake to bribe Nate with so we could motor home and get Noodle's diaper changed pronto!

And I Quote

“Life is an endless struggle full of frustrations and challenges, but eventually you find a hair stylist you like.” ~Author Unknown

L Cool J

Thought I'd share a before and after photo with everyone. Dare I say it, LJ's recovery is coming along beautifully.

Before:
















After: