(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!!
8 comments:
this last week was so busy. And inthose moments of busy-ness, as i paused for my kids, for some strange reason i thought about max.Hugs to you.
I think it's great how they addressed Max like that. It is hard for us to imagine what he's thinking with all the new experiences and such...praying for the appts today.
Prayers, always, for you.
Thankful the dog is situated.
Thankful you've got TWO BIG BEDS.
Thankful you are on the inside and others are anticipating your needs.
Thanks for the link. It was good to get updated on what all is going on with ya'll. Will definitely keep you all in my prayers.
My husband goes into NIH for work sometimes...I think he might have been there 2 weeks ago. For some reason it didn't dawn on me that that's where you were going to be until I read it this morning. Small world.
By the way, like the new blog...I like my blogger blog much better than Xanga or when I had one over on Voxtropolis or M...I just think it's easier.
Glad to know you're there and getting settled. How great that they are focused on Max!! It is about him after all. Hope the week is not too tiring but wonderful and that you get to learn a lot.
Busy, busy!!
Looking forward to hearing what they all have to say about Max. I'm glad that the woman spoke directly to Max, its a good reminder to all of us to do the same.
So good. What stands out most to me is that the people behind you will reap so much from your efforts and this study. For you, I pray light bulb moments, open doors, new pathways and adventure!
Deana,
So glad to hear you all made it safe and sound to the East Coast. What an adventure you are on. Rest well. Hopefully this week will yield some answers you have been looking for. Certainly being a part of this study will help others. What a kind and generous thing. Thank you for all who can't say thank you.
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