Video of our week at the NIH ( Day 5 )

Make video montages at www.OneTrueMedia.com

Today was our fifth and final day at the NIH. I think it was the busiest day too! We started the day with Caleb getting an I.V placed for a lab test. He was a hard stick so we took him upstairs and they used an ultrasound machine to view his vein as they inserted the needle. Caleb did wonderful throughout the whole thing. They put a special numbing cream on his arm and so I don't think he felt a thing!

Then he had an EKG and an echocardiogram. He had professional photograph taken to be kept in his records. He had a skeletal survey done where they took x-rays of legs, back, head, hands, etc. He did so well that the tech said that he did better than a lot of adults! The last test of the day was a skin biopsy.

We ended the day with a wrap- up session with Lynne Wolfe, NP and Dr. Tifft. These two women coordinated all of Caleb's care and were just wonderful! If either of you are reading this blog then let us thank you again for all your hard work. We are very grateful!

Tomorrow morning we leave to go home. The week has just gone by amazingly fast! We unfortunately do not have a diagnosis yet but there are a couple of things that Caleb will be tested for but will take weeks if not months to come back. Some of his bloodwork was even sent off to Germany! Overall, we feel blessed and grateful that Caleb was chosen to participate in the UDP. At the very least we feel that everything possible has been done to figure out the mystery that is Caleb. :)

We also met a couple of very nice families whose children were participating in some other studies being conducted at the NIH. I met a mother who told me that her 12 year old daughter had been diagnosed with a terminal illness only two years ago. I met another mother who shared that her 5 year old son wasn't potty trained either, probably would never potty train. It was last on her list of priorites though because BOTH of her children had a rare disease in which the life expectancy was 10 years old. So we are very thankful that no matter what is going on with Caleb, he appears to be progressing and we expect him to be with us for a very long time.

Thanks to all of our family, church family and friends who have prayed for us during this trip! We love you all!

NIH Day 4

Today was long and interesting. I'm really tired so I'll just share the highlights.

• Caleb had a Dexa scan this morning. I guess it checks for bone density. The test took all of about 20 minutes even though we were told it took 45. I asked the Tech why the test was so short since we thought it was going to be almost an hour and she said that Caleb was a pleasant surprise. He's such an easy-going kid that he just laid on the table and when she asked him not to move....he didn't. Most kids freak out so they allow a 45 minute time slot. Anyone who knows Caleb knows that his middle name ought to be mellow!

• He then met with an occupational therapist who gave us some great ideas on how to help Caleb hold a pencil better to write. She also gave us a hand brace fitted for him and some pencil grips.

• After lunch, Caleb had a blood draw from his hand. They put numbing cream on about 10 minutes prior and he didn't even flinch! They took a bunch of blood too for research purposes.

• Then a Pediatric gastroenterologist came to the room to visit Caleb. We discussed his constipation issue and how to treat it better. She also suggested that we trial a milk free diet for awhile. That'll be very hard since Caleb loves his chocolate milk!

• We finished the day with more neuropsych testing. We'll find out tomorrow how Caleb is doing cognitively and I may take the results with a grain of salt. We'll see...

• Now for the interesting part... We had to take a cab to a New Balance store to get Caleb a pair of shoes that his new orthotics would fit into. We left the NIH at 5:15 pm straight into rush traffic into Washington D.C. and our cab driver barely said a word and drove like a MANIAC! I at least put up 3 prayers for safety. When we got back to the NIH we had to go through the check point which required us to get out of the cab, walk through a metal detector, show our ID, etc. EXCEPT guess who forgot their ID?? I did ( Heather ). Yaa, I wasn't even sure they were even going to let me back in the place. It was a huge deal! Thankfully, I had Caleb's hospital wristband in my jeans pocket to prove that he'd been in the hospital!

• After all of that, we get back to the Children's Inn and I realize that my cell phone is missing!!!! It must have fallen out of my coat pocket into the cab! I called my phone and on the 8th ring a man with a heavy carribean accent answered......the cab driver! Thank God! He ended up coming an hour later to drop it off.

• Tomorrow is our last full day and Caleb is scheduled for an ACTH stimulation test...they'll need to place an IV. He'll have a skeletal survey, skin biopsy, Echocardiogram, and an EKG. We finish the day with stopping by rehab medicine to make sure Caleb's new shoes work with his new orthotics. Hopefully, they do because we are not doing the cab ride into D. C. again! Yaa, we'll pass on that. :)

NIH visit day 3

Today was another full and busy day! We started at 7:30 am with a blood sugar check, then breakfast for Caleb. By 8:30 we were meeting with a speech, language pathologist where Caleb was evaluated. Thankfully, Caleb is already seeing such a great SLP at home that she didn't have a lot to add. We then had an a appt. with a Physiatrist who tested Caleb on his gross motor skills and he actually is doing quite well in that area. He is delayed but we were told that he just needs organized play like tumbling, swimming, etc. to catch up. The doctor also had another suggestion for a different type of orthotic than Caleb is wearing right now.

We had lunch and then Caleb saw a dentist/geneticist. Can you imagine?? These people must have spent half their lives in school! He looked at Caleb's teeth and said that often teeth can give a lot of clues. They did x-rays and thankfully Caleb has all of his permanent teeth up in his gums. The dentist was pretty impressed with Caleb's bifurcated tooth. He said it was a classic dentil anomoly that was pretty rare to see. He was going to research it but he said that it may be unrelated to Caleb's other issues

We then met with a dietician who gave us some tips on broadening Caleb's diet. He's pretty limited in what he'll eat right now. Of course if he has some kind of bacteria in his gut then that would be responsible for a lot of his pickiness. He sees GI tomorrow so we'll see what they say.

We finished off the day with the Enocrinologist/ Geneticist.....again the guy said he did 9 years of school AFTER medical school! The endo/geneticist along with the another geneticist seem to think that caleb may have a particular syndrome in a mild form. It's pretty interesting but I'll share that more when we have more details.


Two more days to go!! Here's some pictures!!

The Children's Inn right across the street from the clinical center

Caleb yesterday after his eyes were dilated.

Scott & Caleb

Scott working on his sermon between physician visits

Caleb playing his gameboy during some downtime.

NIH visit Day 2

Well today was much busier and longer than yesterday. We were at the clinical center from 7:30 am to 5:30 pm. We started off the day with a routine blood sugar check, blood draw and then breakfast for Caleb. He had neuropsych testing for the first half of the day which was pretty exhausting for Caleb and hard for us to watch. They tested him on a lot of different concepts....of course it's a standardized test and so they can only ask things one way. Caleb not only had to think of the answer but also had to work hard to make his mouth and tongue work. For most people talking isn't such an effort, we move our mouth, lips, and tongue without thinking about it. Anyway, we will find out the results later in the week. The assessment will be great to have for when Caleb starts school in the Fall.

We found out today that some of Caleb's labs came back abnormal. We were told that his red blood cells were larger than normal......which could mean a type of anemia and that his Eosinophils were very high. They're thinking that the high eosinophils might be in his stomach and intestines. I guess he'll need a scope with biopsy to rule that out. Either one could be the reason he's so low energy. The good news is that they are both treatable. We were also told that at some point during his stay they will do a skin biopsy. I think it sounds more painful than it truly is....I hope that's the case anyway!

The latter half of the day was spent in the opthamology clinic. His eyes look good except that his vision really is 20/100 and he does need to wear his glasses! They dilated his eyes and the doctor thought that possibly the nerves in his eyes a little more " curly-Q" then they should be at his age. He said it's "probably normal" but since he's in the undiagnosed diseases program they like to be sure and not "probably" sure. So they took pictures of the back of his eyes with a special camera and they will be reviewed in more detail.

The most interesting thing we heard today was that the doctors are actually thinking that what is going on with him is not a sydrome. Very surprising to me since I always thought that Caleb probably had an unknown syndrome of some type. So, we'll see. I'll have more questions about that tomorrow.

We also met Dr. Gahl today. He is the man who spearheaded the Undiagnosed diseases program. We told him that we were so very thankful that Caleb was chosen to participate and he reminded us that they only pick " the toughest cases."

Caleb was such a trooper today! He was so tired by the end of the day but he did fabulous!

Day 1 at the NIH

We arrived at the NIH last night at about 8:00 pm. Our cab driver " Hector" met us at the airport and talked to us about growing up in Columbia during our 20 minute ride to the NIH Children's Inn. The NIH is a huge government campus. We had to go through a security checkpoint which included meeting some armed officials who made us all get out of the cab, show our ID and walk through a metal detector. Meanwhile they were checking the cab's trunk, hood, glove box, etc. I guess they don't mess around. :)

We got checked in at the Inn. They had a gift waiting for Caleb and then they gave us a mailbox key. Everyday, they put a little surprise in the mailbox for Caleb. So far he's gotten stuffed animals and coloring books.

We woke up at & 7:30 am and headed over the clinical center to register. We then were admitted into an inpatient room. We ordered Caleb breakfast, which he didn't eat ( such a picky eater lately!) then we met with the Nurse practitioner who is responsible for planning his schedule with the specialists while we are here. He was seen for a few minutes by a geneticist who ordered an abdominal ultrasound for Caleb. I guess they want to make sure his he has all of his organs and are in the right place such as kidneys. We saw an Endocrinologist Fellow this afternoon and we pretty much went through Caleb's history again. The attending Endo. was busy so I guess will see Caleb later in the week. Scott and I went to the lab to have our blood drawn and eventually Noah will have his blood drawn too and sent to the NIH. I guess they're looking for something different to show up in Caleb's labs in comparison to ours.

We're back at the Inn now. We have a beautiful spacious room with a private bath, tv, and internet access. There's also a huge indoor play area for the kids. They're serving dinner at 6:00 pm and then Scott is taking the shuttle to the grocery store this evening.

I will post more pictures soon!!