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!

The Count-Down Begins...

One week from today we leave our life here in Colorado.

It's been an emotional day for me. I spent the day with Abbey, just she and I at the mall. I had to pick up a few things for myself, and also get a couple of things bought for Max's therapists.

I'll be sad to say goodbye to them. I'm a big ol' honkin crybaby when it comes to good-bye even though I try to hold it in as much as I can, because I hate crying in front of people.

I just have to keep telling myself, this is a part of the journey. Our dreams are coming true, but in order to get to that part, we have to step away from the old, and into the new.

Steve's out of town all week. A part of me wants this week to fly by, and another wants it to go in slow motion, to savor it all. I guess we'll see this time next Sunday which has happened.

Off to bed now.

Who will you vote for?

Last night at dinner I threw the question out there to Abbey, "If you could vote for the next president, who would you vote for?"

A: "I dunno."

D: "Well, who is running for president? Who are your choices?"

A: "Barak Obama, and Hilary Clinton"...(long pause)..."John McCain and Mitt Romney??"

D&S: "Yes, very good!" (side mention to Ang, 'interesting what a 4th grader has picked up on as who is running for president.')

D: "So, who would you like to see be our next president?"

A: "I dunno."

D: " Well, what do you know about all of them?" "What do you know about Barak Obama? Would you vote for him?"

A: " Well, he's black."

D: (sinking feeling in my stomach) "What else besides 'he's black'?"

A: "Well, he'd be our first black president, but I don't know if I would vote for him, because he doesn't talk about the 'issues'."

D: "What 'issues', do you know what 'the issues are'?"

{Quick Civics lesson given by us all on what 'issues' are, then back to the question.}

A: "Well, I heard on the news he doesn't talk about the issues, and doesn't have a plan for healthcare."

D & S: "Interesting..." "Where did you see this news, in Tulsa?"

A: "Yes"

(ah-ha...)

D: "Okay, so how about Hilary Clinton?, "Would you vote for her?""

A: {wrinkles up nose} "UH-UH!"

D:"Really!!, such a reaction, why don't you like her so much?"

A: "I dunno."

D: "Well, that was quite a reaction, and a pretty definite "no way jose would you vote for her" look. I'm really curious what has changed your mind about her, because this summer you said you wanted her to win, and be the first woman president."

A: " I dunno, I just think I don't like her."

D: "What else do you know about her?"

A:" She is Bill Clinton's wife."

D: "Is that all? Do you know she is a senator?"

A: No, where is she a senator?"

D: "New York" "What about Barak Obama? He's a Senator too, do you know for what state?"

A: "Indiana?"

S: "Close, Illionois"

{Ang and Abbey get into a squabble over how to say Illinois (silent 'l' or not)

D: "Okay, those are the democrats, now how about the republicans, what are they about?"

She didn't know anything about either of them. Couldn't tell me whether she liked them or not, any issues she's heard about them, or what they were about.

I found the whole conversation very interesting. Firstly, who a typical 4th grader thinks is running for president was intriguing to me. Secondly, It's obvious that there are two people in this race, as far as the news media is concerned, Barak and Hilary. She didn't readily know that there were more people running until prompted to think of some others for the other team who were running. And thirdly, see how important it is to talk to our children about who might be their next president? At this age, they will hear it from us, or overhear it on the news we watch. They may know a lot of words, but might not know what they mean. Sure, they can't actually vote right now, but one day they will be making the decisions, for us!

In talking about the different issues, and candidates last night, we tried to keep it pretty unbiased, and told her that she could choose whomever she wanted, that was the beauty of America. And just because we may like someone different than she does, or her mom does, or Aunty Angie does, doesn't make us wrong or right, or them wrong or right, it's just an opinion.

It was a good conversation, and made me wish we had her just all the time to have great dinner conversations just like that!

We've come a long way...

We made it through the busy week...almost!

We finished up our appointments today. We were up at Children's from 10:00am until 3:00pm. We saw both sets of doctors, and all were so pleased with where Max is at. I think they all felt proud to send him on to a new adventure, and proud that he has made it this far to see a new adventure. It was a day of remembering, and looking into the near future about his care over there. We will miss them all, but assured, and reassured them that we would not be leaving their care, they were still Max's doctors here, and as far as they were concerned, they could count us as being on a long vacation.

I took a couple of pictures while we were up at the hospital waiting, this one that came out made me laugh. Steve wanted to put Max on this little plastic dog chair. He told Max, "I want to put you on there, but I know Mommy won't let me.". I told him he was quite right in that assumption, it has germs all over it! Then it made me think of that song, Germs Germs My Invisible Dog. hahahaha!



Then we got a picture of Max and Dr. L. too. He was quite a show-off for him today. He was using his switch to talk to him. It was great for them to chat it up. I asked Max who he was there seeing, and he told me "Dr. Laoprasert" with his switch and choices. You would have thought Dr. L. just saw him get up and walk across the room. He was so amazed. He said, "He knows who I am?!; How many other kids do we underestimate because we think we know what is going on inside of their heads?" He asked if we would take video of Max using his talker so he could show all of his colleagues and present it at conferences. Wow...pretty cool!

Here is a picture taken in March 2004, the day we were discharged from the hospital after Max's brain surgery.

We knew so little about Max at this point. We knew we loved him to beyond words, and that we were so proud of his strength. But, honestly had no idea how much life he would have left. We did know, that whatever life he would have, was due in large part to this man.

Here they are today.

We've come a long way! And we still know, that no matter where on this earth we roam, the possibility to share it with Max is still owed to the doctor who took a chance on our son.

With the doctors appointments done for the week, we can focus on finishing up the packing. Steve sent off 3 of the 3 bags we're moving with. He's sent them to his parent's house so we don't have to lug them around the airport.

Abbey comes for the long weekend in the morning. I'm glad there was a fare sale to get her here before we leave. I was feeling sad to not see her before we went. I'm glad we'll finish up here with her.

Steve goes to CA on Sunday, where he'll be all week. I'm hoping he can make it a short week and hurry on back here. Dr. L. is putting Max in overnight EEG testing next Thursday. It will be good to get it done but man oh man have I NOT missed doing those!

The only other thing we have to do next week is finalize Olive's paperwork. Then she'll be one jet-setting mutt!

I better go to bed for now. Abbey already thinks I'm a bum for sleeping past 7:00am every morning...of course she never once hears her screaming brother through-out the night!

Chillaxin!

I am sitting down in our bedroom just relaxing. Of course I'm also listening to some phone meeting Steve is on that is a bit boring...but his office is also where my bed is, so I'll deal with it. ;)

Max is up in Susan's room with her. They are getting in all the alone time they can before we move. I had to take her up on it, because my back is really hurting right now. He's got a monster inside right now! He's as tough as tough can be, and incredibly hard to hold on to!

This evening we are going out for Steve's birthday with some friends and family. He'll be in LA by himself next week on his birthday. That makes me wish I was going to be with him. If only I had my own private plane! I will be finalizing things here though, so we'll celebrate tonight when we're all together.

I started researching absentee voting overseas today. It's a pretty cool idea that we can still vote for our president from a whole other country!

And we got our PT appointment done today. Tomorrow I have to go get his braces for his feet fixed, and he has OT. We also get our duffel bags in tomorrow and we can finish packing everything and mail it on to Steve's parents so we don't have to lug it all from here to MD. We'll just have to lug it to DC and on to London! Then Thursday is his last check-ins with his doctors before we leave.

Friday I don't have anything planned, but that's very smart on my part! I think I may designate that time to finalize appointments and paperwork for Olive.
I need to do some laundry still before we're finally ready to pack...I wish I could just wear a sack! hahaha! And I do still need to get Max's toys packed up, and medicine (surplus) packed and all of the prescriptions printed off.

For now I think I'll go stare out a window and just keep on chillaxin for a few more minutes!

Oh Me!!! Oh My!!!

I am feeding Max at 11:30 at night. He is such a turkey sometimes! Maybe it will make him sleep solid tonight though!

I have had an incredibly full weekend. Thursday night Steve got home from California, so Friday we got to work on deciding what goes, what stays, when it goes...and on and on and on. Oh and Steve still had to work! Friday night we pulled all of our clothes out of the closet and spread them in massive piles on the floor to pack away. This is so not my favorite way of organizing! But Steve was the team leader on this task, so we did it his way. I just had to try to not let it get to me.

Saturday morning was a lot of errands, and ordering our duffel bags online, and emailing pet moving services to see if one of them is cheaper than British Airways. The bags get here Wednesday, hopefully we'll hear from the dog places tomorrow, and we got the car washed and pictures taken to put it up for sale either tonight or tomorrow. Oh and I cut Max's hair. It's cute...but he's a wiggle worm to me when I'm trying to get it straight on both sides!

Today we had lunch with Angie and Dan, and then to Target to buy a few things, i.e., degree deodorant, because you know..."What if they don't have this brand there?! This is the only brand that WORKS!". My poor husband.

After Target, we went to the mall to look for a poofy vest for me that was on sale at JCREW. They didn't have any in the store for me to try on, so I left deflated. I also needed to get some things from a couple of other stores, but they were crazy busy with annoying people, so I'll go back some time this week by myself.

This week is crazy busy. I mean CRAAAAAZY busy with appointments for Max. Monday afternoon he has an EEG. Tuesday is physical therapy. Wednesday is occupational therapy. Thursday is metabolics appointment in the morning, and neurology appointment in the afternoon at the hospital. Friday I may try to get him in to get his boots fixed...but maybe I will try to get that done tomorrow.

But for now I must try to sleep. Because tomorrow will be here soon, and then the week will begin.

My brain is mush!

I am usually so on top of appointments for Max. I have my calendar, tell Steve each appointment made, and show up early when the time comes. In the past two weeks I have missed four...FOUR appointments!

When I finally made it to the appointment to get Max's new boots, I found that I forgot his wheels, so I had to carry him into the doctor's office, and hold him the whole time! I'm telling you...my brain is ready for a much needed rest!

As it sits, I have five appointments to keep up with next week. (So far.) Steve's home all week, so hopefully I will do better to keep on top of them all!

In Max news, he got his first boo-boo. (I don't count cuts and pokes the doctors give him as boo-boos. ) He has two little places below each knee that his knew braces rubbed the skin to hard. It was after he stood in them for several minutes. He went to sit down because he was tired, and the braces pinched his skin on the backs of his knees and he SCREAMED!!! Oh he cried and cried great big "mommy that hurts!" cries. They are healing up just fine, but still makes a mommy feel bad!

I'm glad it's Friday...I don't know why really. All the days are starting the blur...but something about Friday just relaxes me. I have no appointments...I checked 3 times! Steve's home from California, and we can get some stuff packed! All good things!

Hope you have a great weekend!

Olive and Max

I was looking through old pictures today and found these sweet ones of Max and Olive. They are pretty close, even though he likes to kick at her. He has calling her name as she walks by. And we're trying to teach him that touching with his hands is much nicer than kicking with his feet. He loves to pet her.

This picture was taken the day we brought Max home from his first long stay at Children's. He had been in there a month after his brain surgery. When we picked Olive up at the kennel, she went and got on Max's carseat and sat there the whole way home. Once we got home we put him in his little rocker chair, and she climbed right up with him, and stayed until we got him out after his nap.


I just love this picture because...come on...it is so stinking cute!


The reason this picture is so significant to me is retrospective. This was the first time Olive met Max. All through my pregnancy she would sit right up next to my belly. As soon as she saw him she laid down right beside him and put her little feet on his head. On the left side of his head, the side he was having seizures. He was only days old in this picture.

What it is...

Have no fear. A beautiful future lies before you. Let it be a new life where every happening, event, and plan you are conscious of Me.
--Two Listeners



At the end of this month, we are going to Maryland to put Max into a study with the NIH for his rare metabolic disorder. We're hoping it will shed some light on what makes up Max. From there we are going to the UK, to see more doctors, and see if it is a place that will offer more for us. As it is, Steve will continue to work with his current employer, which we are very thankful for!

That's the big news. I know you're just busting at the seams aren't you? ha ha ha!

We're really excited to go. There is still a lot of work to do before we leave, but we have our tickets and are set to go.

Now you know! :)

I'm Spinning!

We've had quite an eventful few days around here! This weekend was a flurry of doing things needed for our move. Taking things to storage...still getting rid of things...deciding what to take.

Yesterday Max was really tired. He slept nearly all day, and all through the night. I should have known something was up! This afternoon he was increasingly in "Elmo's World", as we call it when he gets in his little trances and doesn't want to be touched or talked to. Then he started having seizure like activity, but it was not seizure, because as soon as the episode would pass he would start asking for Elmo, or be talking about something. The episodes started getting closer together, and I took him into our room where Steve was on a phone meeting. I wanted Steve to see what Max was doing, and to help me decide if we should give him an extra dose of his medicine. That's when the wretching started. Like he did nearly a month ago, that landed us in the hospital!!!

We called the neurologist, because Max had been eating well all day. I wasn't worried about him being dehydrated either. Dr. L. told us to double his dose of medicine for the migraines. He went on for about another hour, but then it quit just as quickly as it came up on us. He woke up at about 5:00pm from napping while I held him, only to eat 2 full cans of formula! He was hungry!

He's sleeping now, after giving him some Tylenol in case he has any pain from all of the extra movement he had going on today.

Steve's on his way to California for the week. I'm hoping next week I'll get to see my husband more than two days in a row.

At one point today, we were trying to get Max to tell us what was going on, by using his switch. This episode didn't follow the cycle he has been on, so we were confused as to why he was doing it. I asked him to start his choices and let me know what was going on. I asked him if he was spinning (because I had a feeling he felt dizzy), his head hurt, his tummy hurt, or if he was having ickies (what we call seizures). He told me he was spinning...then would laugh! In fact he told me a total of 5 times he was spinning, even after I changed the order of choices around. And in between each episode he would get very excited and laugh. I think he may feel extremely dizzy during these episodes, but to him it just feels funny. Sometimes it really seems to scare him though, so I was glad he was thinking it was fun today.

It's a strange thing, that's for sure. But I am glad it only lasts for a bit and then is over. It just is sure difficult while we're going through it. We see his metabolic team, and his neurologist next Thursday. Then we have about a week and a half left here in Denver. Crazy crazy crazy...I think I'm the one who is spinning!

Olive says hello...

And she hopes you have a great weekend!

First Post

Here is our new bedroom...




We're preparing for a move, a big move. Most of you could guess if you tried where we are going. It's a dream come true...and a lot of work!

I hope to update here more frequently, and wean off of xanga. I don't like their ads...gross! And I can do a lot of other neat things on blogger, and it's attached to my google account which I use for most everything online.

Here's to a new year...and a new blog!