NIH days 2 and 3

I guess it is officially days 1 and 2. We got up and around yesterday morning, Monday, and Max and I went to the first appointment. It was just 7:00am Colorado time, so Max was having a hard time waking up. We met up with the metabolic team and they got Max's extensive history. My brain was jelly after that! I had to recount every little thing since he was born. It was interesting to say the least! They also looked him over from top to bottom, looking at every single little part of him taking notes the whole time. They even smelled him! (One of his medicines makes him have a pretty fishy smell, and the doctor was noting that to the students and having them smell of him so they know the smell.)

Over and over they asked about his current treatment, they were surprised at the levels of medicines he was on. They don't normally see kids at that high of doses. And Max is on one medicine that they haven't seen on anyone else. Our doctors in Denver sure are renegades it seems! ;)

Our second appointment (almost 4 hours later!) was with opthamology. They were running a bit behind so it was later than we were supposed to get in. The doctor dilated Max's eyes and took some history as well. After an hour of dilation, he looked in Max's eyes and said they looked to be in good health. (Max's condition can cause his retinas to deteriorate, he didn't see a lot of that at all, which is a great thing!) He also wrote me a prescription to get him glasses because he is quite far sighted.

We finally left the clinics around 5:00pm. They sent us back to the inn with a baggy to collect urine in over-night. I really should get paid for all of these nursing skills I possess these days! When we got back to the Inn, Max was exhausted...I was exhausted! I laid him down and he went right to sleep, I decided to lay down by him, and for the first time in ages I took a nap!

Steve had work he had to be at all day, so he was on his way back from the city while we took our little snooze! He got us some food and we ate dinner out in the dining area here at the Inn, then headed right back to bed! What a day!!!

This morning we were all a little more rested, and I was not as overwhelmed knowing that Steve would be with me for the appointments. We got around and to the first appointment, with neuro-testing to do a developmental assessment of Max. He was once again sound asleep for the interviewing process, so the doctor just asked us the questions. I was glad that she was basing it on the interview, and not solely on how Max was acting! I think that report would have been that he just sleeps and snores during interviews, and only wakes when we say the word Elmo or Opera!

After that appointment we went to the Pediatric Clinic to pass off the urine sample and take down the measurements for me and Steve, since I guess we're in this study too! Next we went to the blood lab to get samples from each of us. Steve and I only had to give 5 vials each...Max was twice that. I wonder what they are going to do with all that blood!? Curious and Curiouser!


We stopped to have lunch, and then Steve had to go on to do some more work. We then went on to radiology for an ultrasound of Max's gizzards and pictures of said gizzards. It tickled him I think because he kept squirming all around and making it very difficult for a clear picture. we finally got all that done and went on for the hand X-ray to measure bone growth.

Now we are back at the Inn and done for the day. I think I am going to get some phone calls made, and play with the super star for a while. We'll be keeping you updated, so check back tomorrow for more in the life of Max!

NIH Day 1

(our room at the Children's Inn at NIH)

NIH Visit

We are staying at the children's inn at National Institutes of Health. After we dropped Olive off with Steve's parents, we headed for the NIH campus to get checked in and Max admitted for the week.

It was pretty cool to cross over the Patomac River...I'm such a historical site geek!

Once we got here, we had to drive around and around until we found the only open entrance. We pulled in and were ushered into a check station. Man, they weren't kidding. We had to open the doors, turn the car off, get out of the car and walk through a security area, like you do at the airport.

They took our driver's license, and brought them back after a couple of minutes with name tags for us to wear.

We then got the correct directions to the Children's Inn and came in to get checked in. They greeted us, and we filled out a few forms. One of the ladies at the front desk came and gave Max a welcome box. She then showed us around the Inn. She showed Max his very own mailbox, which he will be receiving mail each day. She spoke directly to him the whole time. If it was something we needed to know, she told us, otherwise, this was for Max, so she spoke to him. It was really such a different experience, someone just meeting Max and talking directly to him!

We got into our room and Max went immediately to sleep. It's been a pretty long day! He was really such a good boy on the plane ride, and he was just at his limit.

Steve went over to the hospital to check us in so we wouldn't have to mess with the lines in the morning. After he got back, I went over and finished the process, because Max was still sleeping.

We are here for a study on Max's metabolic disorder, MMA (Methylmalonic Acidemia) specifically Cobalamin C Deficiency form of MMA. Tomorrow we will meet the head doctor in the study. I think they will take some blood from Max and us tomorrow, and then we will go over his entire medical history....ay yi yi!

In the afternoon he sees an opthamologist who has seen numerous kids with Max's same condition. I'm really excited for that!

For now I guess I should sleep! It's only 9:35 in my mind...but creeping up on midnight here!!

First stop...

We're in D.C.. After a couple of very busy days, and many more to come. I am sitting in the car outside of a Whole Foods Market where we dropped Olive off with Steve's parents.

We're on our way next to the NIH to get checked into the Children's Inn, our lodging for the week.

I'll update when I can, but just thought I'd let you all know we made it, and to thank you for all of your prayers!

EDIT:
Oh my wowsies! This place is amazing!

I'm feeding a very chipper Max right now, then I will take some pictures of our room.

Steve is over dong admissions right not so we don't have to fuss with it in the morning.

We have a pretty full schedule it seems while we're here.


I'll write more about what the week holds once I know admissions is done and we're nearly ready for bed.

Right now I am going to put some bags away, and take a couple of pictures of our room before we make it look all lived in!

Oh sleep....

Each day is a day of steady progress. You may not see it but I do. Persevere. Love and laugh.

--Two Listeners

3:30am...I'm still awake. I finally went out and asked the nurse if we had to have the lights on for the study...should have asked 4 hours ago. No we don't. I guess the camera can pick up in the dark. He's sleeping for now. I guess I could try. But you know the rule there...as soon as my head hits a pillow he wakes up.

I would love to sleep...just one night...sleep through the night. I would feel like a totally different person I think.

Okay...off for now. I've put on Max's opera, maybe that will keep him in sleep too. I really don't like sleeping to music. Not trying to sound ugly about it...just sayin'...the things we do to keep our kids happy...so they'll sleep...for a study to watch them sleep...in a most unnatural setting.

Happy Birthday Grandpa...

I'm up at the hospital...Max is thinking hard and they're catching it all on video. I just heard a helicopter fly in...I used to like to see helicopters up close...now I just think of sick babies in them. We should be out tomorrow, I'll be glad to not be in here for more than we need.

Steve got back this evening, so that is a huge load off for me. He can manage things at the house finishing up while we are here doing the EEG test.

We've finished all of our appointments this week. I feel ready to go now...I just want to get on the plane and go. That has nothing to do with leaving behind anyone...I just want to get on with it!

Today was my Grandpa Yandell's 80th birthday. I got to talk to him for a while as they were getting Max all set up for his test.

I've always felt extra very special lucky to have him for a Grandpa. There really isn't another human on this earth that holds the place in my heart that he does. I was trying to think of what to write about today to talk about him on this special birthday, and I remembered a comment I put on Leanne's site some time ago in response to a picture she had posted of an open field with trees. It had reminded me of a special morning walk I had with Grandpa. I thought it was appropriate to bring that comment here, for my Grandpa today.

"I see me walking with grandpa on a cool morning up at our lake house in Oklahoma.

He's telling me the story of jonah...one of my favorite told by him...or maybe esther...she was a queen you know.

He has a big stick he'd found along the way snapping it apart by his big strong hands and tossing the little bits aside.

I have a smaller stick, using it to steady my step while trying to match his enormous stride.

We pick up rocks along our way. Some of them are stuffed in my pockets to take back to Grandma to paint on, others are for our rock garden, and others still are to put in the tree stump at the end of the road, where Jack the donkey lives. We put rocks there to see if they are still there on our next walk.

And once we put the rocks in the rotted out stump we stop to take a breather before walking back up the road to our place. And that's when I look up and see the sun breaking through the trees. Just like in this picture. And Grandpa says, God made all of this...just for us this morning. Isn't it beautiful? He's such a great God. I want you to always remember how much he loves us...and how he sent his son to die for us...to cleanse us of our sins. And it is my prayer that you love and follow Jesus every day of your life.

And then we sit there...soaking in God's warmth...until the sun has just about reached the tops of the trees. That's when we head back home, where Grandma has prepared all the fixings for breakfast.

Grandpa start up the fire in our big fire pit outside...and we each pull up our little tree stumps that he made us stools out of. And we help bring the food out.

His eyes are crying from the onions..."wheeeew! These onions are gettin' me!" Then go in the potatoes. And next is the bacon and then the eggs.

I'm pulling out my bounty of rocks and lining them up for everyone to see. My older sister is helping Grandma set the table. My brother is helping Grandpa by killing any bugs that might enter the sanctity of our cooking and eating area. And my little sister is helping Grandpa cook by singing him songs.

And when it's time to eat we sit together at the picnic table and we hold hands and pray for the food and for the family and for fun.

And little did I know that 20 years later, a picture on a friends blog would bring back every aspect of that day."

That was just one day of my childhood...just one story. A whole book could be written full of days and experiences just like that.


(Little Deana sitting on Grandpa's Lap)

Running the race...

I'm tired.

You know, that kind of tired that you're running a race in gym class, and you know you have to finish for a score, but you're just soooo beat. But then you remember that if you just push on through the race will be over with and you can collapse on the grass and just breathe? Yeah...that kind of tired. I'm just ready for that second wind to hit me!

This week was supposed to be a light one. Things still have to be done, and new things added onto my plate, all while Steve is gone. It's getting hairy around here! It still feels like so much is to be done. We have to go to Max's last therapy, and get paper work into medicaid, and go sign some papers for the county, and he has an overnight EEG at the hospital on Thursday. Picking up medicine at several different pharmacies, and taking Olive to the vet, and getting my hair cut, oh yeah...and trying to see my sister too. Then there's packing...yes we still have to pack for the trip!

I think I'm ready to collapse on the grass!

Happy Birthday to Steve!

It's my husband's birthday.

I wish we were together to celebrate.

Happy Birthday to you, my love! What a great year we have in store!