International WAGR Syndrome Association

We landed at Baltimore Washington International airport around 3:30 PM and Shari Krantz and her daughter Amy were there to greet us.  We drove to their house for a delightful Easter dinner and visit.  Amy and Nicholas hit it off from the start.  It was like they both knew each other for years.

While we were still at their house Dr. Han called.  She just wanted to check in and to see how things were going.  She assured us that we would see her in the morning.

We arrived at the NIH complex after 7 PM.  The place is like Fort Knox.  We all had to pass through security before entering the facility.  The car had to be inspected and we were all issued a badge for entry.

We arrived at the Children’s Inn and checked in at the front desk.  We filled out some paperwork.  Then the gal asked us if anyone in our party was sick.  I was just holding my breath that Nicholas wouldn’t blurt out that he was just getting over a cold or that Clem was sick.  We all had cold like symptoms for over a week.

We said good bye to Shari and Amy and were shown to our room, which was on the second floor.  There were a number of rooms in each wing.  Each wing had its own laundry room with two washer and dryers.  There was also a phone that you could use to make local, long distance or international calls.  The linen closet was directly across the hall from our room and came in handy.

There was a dining area that led to the kitchen.  In each room there were keys hanging up by the door.  Each family had a key to the fridge and cabinet closet for food storage in the kitchen.  There were labels you could use to mark your food.  Four families shared access to the same fridge.  The pantry held lots of staple food items (peanut butter, jelly, microwave meals, etc).  It also had a supply of paper products that families could take as needed.

We left the Inn and reported to the NIH shortly after 8 PM.  It was a nice walk between buildings.  The daffodils and tulips were in bloom and smelled so nice.  When we arrived at the NIH it was empty.  We walked down the main hall passed the gift shop and checked in with Admissions.  The lady at the desk asked us if we were patients and I said no.  So we were given paperwork to fill out.  When she went to load our information into the computer we were already in it.  Because we enrolled in Phase 1 of the study we were already in the system and did not have to fill out very much paperwork.  Nicholas received his patient wrist band and we were asked to report to 1NW.

When we got to the Pediatric unit Nicholas was shown to his room.  He would report to this room every time he came to the Hospital/Clinic.  Obviously he could have stayed in the hospital room the entire time if he wanted.  We only chose to stay in the hospital when it was warranted for testing purposes.

Nicholas was greeted by a nurse and a doctor (Marine) from the Naval Hospital who was just filling in.  He was very nice and tried to get Nicholas to commit to working out with him at 5 AM on the lawn the next morning.  The nurse took Nicholas’ vitals then said we could leave for the evening.  You will need to sign the child in and out at the main nurses’ station every time you enter or exit the hospital.    We reported back to the Children’s Inn and went to sleep.  Of course I was so anxious; I really didn’t sleep too much this first night.

Monday, April 13th –

            We left the Children’s Inn and headed off to the NIH.  You will need to sign in and out at the front desk every time you leave the Inn.  When we got to 1NW we signed Nicholas back in at the nurses’ station and asked them to take Nicholas off pass.  (Note:  when the child leaves the building the nurse puts them on pass in the computer so everyone knows he/she is not in the building)  We went to his room and tried to order him breakfast.  However, he was still showing on pass in the computer.  So we were NOT able to order his meal until the nurse actually went into the computer and took him off pass.  That is why it is really important that you make sure the nurse does this promptly.  There is a very tight window to get these kids food.  Generally the kitchen will tell you that your food will be delivered in 45 minutes.  However, there were times it would take up to an hour or longer to receive the food tray.

Dr. Han examined Nicholas and was there to address our concerns and answer any questions we had.  When she was done with the initial exam Nicholas stayed in the room with Clem to do the sensory testing.  Kristen walked me to an area in the building and left me in a conference room where I met up with the Neuropsych team for the parent portion of the evaluation. 

            The Psych evaluation was scheduled for a three and a half hour block.  It was a pretty intensive evaluation.  I needed to provide specifics about the skills that Nicholas was able to do between the ages of 4-5.  Thankfully, I brought a binder of IEP’s from birth to Kindergarten with me to reference.  The information definitely came in handy and we were able to finish up a little bit early.

During this time, Nicholas worked with Kristen on a sensory test.  He also had an EKG and Bone age x-ray.  On my way back to the room I stopped to pick up our food vouchers in the Admissions area.  Each family will be given money for food allowance.  By the time I got back to his room Clem had ordered Nicholas lunch.  Nicholas felt pretty important being able to order food and have it delivered to his room.

            After the MRI we headed up to the 5^th floor and ENT.  Dr. Han had asked the ENT doctor to check and verify that there was a tube in Nicholas left ear.  The physician sprayed his nostrils with numbing medication so he could put a scope into it to check his tonsils and adenoids, per our request.  It was really interesting to see the insides of his nose on the computer screen.  We left with a color photograph of Nicholas’ voice box.  Nicholas tolerated this exam very well.

            Our last visit for the day was to the 7^th floor for the nerve conduction test.  People had been telling Nicholas that it would feel like he was snapped by a rubber band.  He was a little anxious, probably because he didn’t know what to expect.  But he did end up getting through the test.  At one time during the test he did say to the doctor, “That hurts lady, stop shocking me.”    

            When we got back to his room we ordered dinner, which comprised of three cheeseburgers, three milkshakes and three bags of chips.  I do have to admit, for hospital food, it wasn’t bad.

            We got back to the Inn before 6 PM.  I signed up to take the shuttle bus to the Giant grocery store and it was scheduled to leave at 6:30 PM.  There were 11 other people on the shuttle with me.  Nicholas stayed at the Inn with Clem and played in the playroom.

            We watched a little bit of TV in the room before heading off to bed.

Tuesday, April 14th –

            We didn’t have to report to the NIH until about 9 AM so we were able to sleep in.  We ended up having a light snack at the Inn before heading over to the hospital.  Nicholas started the first of two 24 hour urine collections.

     The physicians from Genetics came to the room with Dr. Han to examine Nicholas.  They took measurements and gave him a good once over.  Nicholas was very cooperative.

              After lunch Nicholas was scheduled for another sensory test.  We finished up the day in Ophthalmology.  It was so busy when we got to the 11^th floor.  The office was double booked with appointments plus they had a family show up on the wrong day.  Our appointment was for 2 PM but it wasn’t until 3:30 or so before we were finally taken down to the 10^th floor for the eye exam, pressure check and pictures.  Dr. Brooks came and saw Nicholas after that.  It was a long afternoon but worth the wait.

            We left the NIH on pass and returned back to the Children’s Inn.  We decided to order pizza and salad from Victor’s for dinner and had it delivered to the Inn.  It was delicious.

            We took Nicholas down to one of the meeting rooms to play BINGO.  There were a number of families already playing so we joined in and had a great time.  Nicholas ended up with four prizes: a Disney Medical kit, an Elmo drill with Cookie Monster glasses, tick tack toe game and Spiderman magna doodle.

            We went to bed early because we had to report back to the hospital before 6:30 AM so Kristen could administer the Resting Metabolic Rate (RMR) test.

Wednesday, April 15th

            We returned to the NIH before 6:30AM.  Nicholas needed to be in bed and resting for a half hour before Kristen could begin the RMR test.  Nicholas didn’t mind staying in bed because he enjoyed playing with the controls on the bed.  He loved having the ability to make it go up and down.

            Around 7 AM Kristen put the helmet and tent on Nicholas for the RMR test.  Nicholas was able to watch TV through the helmet while lying in bed.  He had to lie still for about 30 minutes.  He did a great job.  We were very proud of him.

            The nutritionist came to our room once the RMR test was completed.  She took a 30 second reading using a device and reviewed Nicholas’ three day food diary with us.  She gave us a lot of healthy food suggestions before leaving the room.

            At 8 o’clock Nicholas finished up the first 24 hour urine collection and started the second collection.

            We walked Nicholas down to Ultrasound right after lunch.  Everything went very well.  Nicholas gets routine ultrasounds, so he was very familiar with the process.

            It was a very long process because Nicholas was still not happy with the fact that he had to sleep in the hospital.  He remained pretty calm during most of the EEG test but started to get worked up towards the end of the test.  I ended up lying on top of him to try to keep him calm.  At one point he tried to get up and said he was going to pull the plugs right off his head.  I knew that would not be good.  He did end up finishing the EEG and Ms. Jackie did remove a number of plugs.  Nicholas ended up with 10 plugs/wires on his head for the sleep study.  Ms. Jackie wrapped them up and then put a mesh hat on his head to keep them in place.  Nicholas was not happy and said he was going to tell Dr. Han he was not staying in the hospital.

            We went back to the room and Dr. Han came in with an Endocrine doctor to check out Nicholas.  Everyone told Nicholas how proud they were of him.  Nicholas politely accepted the compliments and then told Dr. Han that he would sleep in the hospital for one night.  She grinned, knowing full well that he also needed to sleep in the hospital Thursday night also.  I just wanted to get through the first night, and then we would try for night number two.

            Dr. Han tried her hardest to take Nicholas’ mind off the plugs and sleep study.  She asked him what they could do to make it a more comfortable stay in the hospital.  She had the nurse track down the mobile Nintendo game and brought it into his room so Nicholas could play it.

            Nicholas was scheduled to go up to have his vein ultrasound for the IV placement.  We went upstairs and the technician marked good veins on both arms.  Nicholas didn’t seem to mind this at all.

            Curtis came to hook Nicholas up for the sleep study around 9 PM.  He had wires connected everywhere:  on his legs to see if they moved, his chest to monitor the heart rate, under his nose to monitor his breathing and on his back.  He had a microphone positioned under his chin to record any sounds he made during the night.  He had two belts around his chest for something else.  I could have never fallen asleep with all these wires and monitoring devices.

            Nicholas told Curtis that he would need to remove the wires and plugs at 5 o’clock the next morning.  Curtis then asked Nicholas “Don’t you want to sleep in?”  Nicholas quickly responded, “NO, it’s not the weekend.”  He made me chuckle.

            Clem had already converted the loveseat in the room to his bed.  I had planned on sleeping on the other loveseat, which Curtis was using at the time to work on the computer.  The nurse came in and asked me who would be staying with Nicholas during the night and I responded that we both were.  That’s when she informed me that only one parent could remain in the room with Nicholas at night.

            I became a little anxious.  We both told him earlier we had to sleep in the hospital because they were cleaning the room at the Inn and we couldn’t sleep there (I know, we had to tell a few white lies during our visit).  So I sat in a chair behind the curtain hoping that he would fall asleep.  I was able to sneak out just before 10 PM and walked back to the Inn.

            Of course I worried the entire time about how he was doing.  I hoped that he would not call my name and find out that I wasn’t there.  I did not sleep very well at the Inn wondering how things were going.  I set my alarm for 4:30 AM just to make sure I was there if he woke up at 5 AM.  He didn’t.  We had to wake him up around 6:15 AM to get him upstairs to get his IV inserted by seven o’clock.

            We were so happy that he got through the night.  We told him how proud we were of him and he agreed that sleeping in the hospital was “a piece of cake”.  Ms. Jackie came down to check on him and brought him a special reward.  I told her that I was going to recommend that she be given a raise.  She deserved it.

Thursday, April 16^th –

            Nicholas had EMLA cream put on his arms where they had marked his veins on Wednesday.  This would help keep the pain to a minimum when the IV was inserted.  I’m really glad they used the cream because he ended up getting poked twice.  He was a real trooper and didn’t really mind saying “It’s just a little poke.”

            When we returned to the room the nurse came in to take his vitals and he completed the second 24 hour urine test.

            It was now time to drink the shake for the mixed meal test.  After drinking the shake, the nurse drew blood on a timed schedule.  Nicholas didn’t really mind having the blood drawn or the IV flushed.  He couldn’t eat or drink anything and that was the hardest thing for us to overcome.  But we did other things to help keep his mind off the lack of food and his growling tummy.

            Dr. Han and Kristen came later to check on us and to escort us to Audiology for another test.  He still wasn’t finished with the blood draws so Dr. Han and Kristen took the supplies to Audiology and finished drawing the blood themselves.

            After the hearing test Nicholas was scheduled to go with Kristen to the dreaded (at least by us) lunch buffet.  The lunch buffet was set up the same for every child for comparison.  Of course there were a number of healthy choices in the buffet mixed in with the less healthy/sweet choices.  Clem and I were graciously excused and headed out to lunch.

            After lunch Clem and I went to meet Nicholas and Kristen where he was having lunch.  As I waited I hoped that Nicholas would be making good choices but knew deep in my heart, that he probably wouldn’t.  It seemed like he was in the room for a very long time.  When he finally emerged he was stuffed.  His stomach was so hard he could hardly breathe.  Reluctantly, I asked Kristen if he ate a lot and she very sadly nodded yes.  She did say that he picked up a carrot and said “this is really healthy.”  Then looked at the M&M’s and said “My dad likes them.”  In the end, I am not sure how much he ate but it was a lot.  He was so thirsty afterwards.  Kristen told me that there were beverages to drink in the room however Nicholas did not drink anything.  Why would he?  He was too busy eating.  He paid the price for it later that afternoon, throwing up after he returned to his hospital room.

            We were scheduled to meet with pre-anesthesia around 1:15 PM to go over the MRI sedation set for Friday.  We asked Kristen if Nicholas needed to be with us and she wasn’t sure.  We told Kristen that we did not want Nicholas to hear anything that might scare him about the MRI procedure.  We weren’t sure if the doctor needed to examine Nicholas so we all walked down with Kristen to meeting room.

            The doctor sat behind her desk and started to inform us about the procedure.  Kristen quickly stood up and asked the doctor if Nicholas needed to be present for the meeting and the doctor said no.  So she took Nicholas out of the room while Clem and I finished up going over the information with the doctor.  We were so happy that he was not in the room to hear everything.

            Dental was our last stop for the day and Clem and I walked Nicholas over.  We didn’t have to wait long before they called us in.  Nicholas was very cooperative he generally doesn’t mind going to the dentist.  He had a couple x-rays taken before Dr. D. came in.  Dr. D. gave him a thorough exam and checked the x-ray.  Nicholas still has four baby teeth that need to come out.  So we talked to the doctor about our options.  Nicholas left the area with a new tooth brush and toothpaste.  The technician gave me a copy of his panoramic x-ray and the full profile x-ray of his head, teeth and jaw.

            We were anxious to meet Shari Krantz and Amy for dinner.  The kids were both looking forward to playing games at Dave and Busters.  Clem and I were just excited to get some R and R away from the hospital.  Clem played a few games with Nicholas while I got to spend time talking with Shari.  The food was really good, although Nicholas didn’t have his normal appetite.  He only took a few bites of the soup and ate part of my grilled chicken salad.  Could it be that he was still full from lunch?  Shari drove us back to the hospital and we said good-bye.

            We walked Nicholas back to his room for the night.  Dr. Han had told us earlier that we didn’t have to stay in the hospital if it was going to be too hard for Nicholas.  However, we didn’t give him the option and he was fine once things settled down.  Clem walked back to the Inn.  Nicholas wanted me to sleep with him in his bed.  It was a little crowded so I eventually moved to the cozy loveseat.

            The nurse came in around midnight with a flashlight covered with red plastic to draw blood from his IV.  Apparently the red light does not affect the results of the cortisol test.  Nicholas did wake up but then quickly fell back to sleep.

            The nurse came back around 5 AM and took more blood and asked for a urine sample.  He obliged and then we both went back to sleep.  Clem arrived around 7 AM and we all got ready to walk Nicholas down for his MRI.

Friday, April 17^th –

            A nurse came in and took Nicholas’ vitals.  She informed us that she had called for an escort to walk us down to MRI.  I held my breath and looked at Nicholas.  He replied, “The tunnel?”  I told him not to worry we were only going down there by the tunnel.  (I know, I’m bad)  Anyway, we walked down.  Nicholas got to press the handicap buttons that opened the doors for all of us.  When we got to the MRI waiting room Nicholas looked around and said “I hate that tube”.  I really didn’t say too much, just tried to distract him from any worry.  The anesthesiologist walked through the door and called for Nicholas.  Before he could get another word out, Clem jumped up and asked if he could have a word with him in private.  When they emerged the doctor asked Nicholas to come with him.  He had a bed set up outside the MRI room that he asked Nicholas to jump up on.  Nicholas told him again that he didn’t like the tube.  Another lady came and said, “That is why they were here.”  The doctor told him he needed to flush his IV (he was actually giving him the sedation medication) and before Nicholas could say three words he was out.  He was taken into the MRI room.

            Dr. Han came in shortly after Linda left to go over some of the test results with Clem and me.  Fortunately, we received good news with no surprises.  We were very excited to hear that Nicholas bad cholesterol had decreased from nearly 200 to 95.  So the Lipitor is definitely working.

            We all ate lunch and then headed down for Nicholas’ Dexa scan.  The Dexa was a full body scan that looked at body mass and muscle tissue.  Nicholas was a little anxious but then realized that the test wasn’t going to hurt.  He just had to remain real still.  He made it through without any problems.

            After the Dexa scan Kristen walked us up to Ophthalmology.  Dr. Brooks wanted to get some additional pictures of Nicholas’ eyes that he did not have time to get on Tuesday.  Nicholas was very cooperative.  Clem and I waited in the waiting room for him.  We heard ladies laughing so we assumed that Nicholas was entertaining them with his witty sense of humor.  We finished up the day in Physiatry before heading back to Nicholas’ room.

            Catherine and Irma Luis and Shari Krantz and Amy came to visit us and it was the perfect ending to the hectic week.  They all came to rescue us for an evening out.  It was wonderful to see all the kids interact together.  Dr. Han and Kristen were also very happy to see everyone.  We took some group pictures before heading out to dinner.

We stopped at Bohrer Park on our way to the restaurant.  We walked around the facility and it is the perfect place for WAGR Weekend in July.  Nicholas is already anxious to return to play putt-putt.

            Shari’s husband Jim met us at a local restaurant and we had an enjoyable meal despite the poor service.  More importantly, the kids had a wonderful time too.

            After we left the restaurant we stopped by the SpringHill Suites hotel and Nicholas and Amy got to enjoy the pool.  The hotel is very nice and both Shari and Catherine did a great job selecting it for the families that will be attending WAGR Weekend.

            Catherine drove us all back to Children’s Inn where we said our good-byes.  It is always difficult to say good-bye.  However, this time it was nice just to say good-bye and we’ll see you in July.

       When we got back to the Inn I went to the computer room to check in for our flight on Saturday.  I checked Clem in without any problems.  I encountered problems when it came time to check Nicholas and me in.  Apparently our flight out of Baltimore was cancelled and we were put on a flight out of Reagan Airport.  Needless to say, it was a very frustrating end to a nice day.  I was up until after 11 PM trying to get things resolved. 

Saturday, April 17^th –

We checked out of the Inn around 7 AM.  We stripped the beds and put everything in the laundry room.  We also emptied the garbage cans and donated any uneaten purchased food to the pantry.  We collected all our belongings and headed up the hill to the NIH for the last time.  Nicholas was scheduled for a fasting heavy water test.  The test started at 8 AM and ended at noon.  Catherine and Irma came over to spend the day with us and we really enjoyed their presence.

Dr. Han called and told us she wanted to get one last blood draw from Nicholas just as a precaution.  Since Nicholas was sedated there was a risk for pancreatitis and she just wanted to check his labs one last time.  Since Nicholas’ IV was taken out the nurse would have to stick him.  The nurse asked me if he needed the Emla cream and I told her that he would be fine as long as it only took one poke.  I wanted her to draw it while Clem was still there so he could help keep Nicholas still.  I told her to find someone who could get it drawn the first time.  She told me that she would be able to do so.  She couldn’t.   In the process of trying to find the vein she was digging around trying to get the needle in the vein.  I wanted to tell her to stop so badly.  Nicholas amazingly did ok.  It just took so long and she dug so deep that he finally said “You’re hurting me.”  I wanted to scream.

Clem had to leave at 9:30 AM to catch his flight at the airport.  We walked him out to the taxi and said good-bye.

Two nurses returned to look at Nicholas’ veins.  They decided to use the Emla cream to alleviate some of the pain.  Fortunately, with some luck they were able to get the blood drawn.

It was hard to keep Nicholas’ mind off food.  The entire morning he wanted breakfast in the worst way so I had to pretend to order it and then come up with reasons why it was delayed.  Nicholas did not want to leave the hospital before he had breakfast.  At noon Nicholas gave his last urine donation and had an orange juice and apple before being discharged from the hospital.  Our NIH amazing adventure had come to an end.  Nicholas had survived and definitely took first prize.

We left with Catherine and Irma and decided to drive back closer to the hotel to find a restaurant for lunch.  We found the perfect Mexican restaurant – Uncle Julio’s.  The food was fantastic.  The company was even better.  The weather on Saturday was beautiful.  After lunch we walked around before heading back to the SpringHill Suites.  We were able to relax in Catherine and Irma’s hotel room.  Nicholas enjoyed watching the Food Network channel.  We were trying to see who was going to be chopped.

  Catherine and Irma drove us to the airport and we were sad to see them leave.  It was so nice to have the opportunity to visit with them, even for a short period of time.  We made it back home, tired but safe.  That was the important part.

We cannot begin to thank Dr. Han and Kristen enough for all their efforts on this project.  Not everything ran smoothly all the time.  However, Kristen had things under control.  She was very organized and addressed any problem or concern that came up during our stay.  We were always able to get a hold of her and Nicholas really enjoyed her companionship.  Kristen explained things and listened to him.  She tried to assure him that things would be fine when he was scared.  She was amazing.  She is going to make a great physician one day.

Things to Remember

At the NIH –

Be sure to sign in and out at the nurses’ station and have them take the child off pass when you return to the hospital.  Otherwise you will not be able to order food service.

            If you need an escort to/from one place to another make sure you check with the nurse at least 30 minutes prior to your appointment so that an escort can be arranged.  Kristen accompanied us up to a number of appointments.  After two days we found it easier to navigate through the building.

            Don’t be afraid to order food with your child’s meal, especially if you are the only parent with your child.  You will not have a lot of free/down time to catch a bite to eat.  You can order food or snacks any time during the day.  Take the menu with you so you can order food on the fly and it will be waiting for you when you get back to the room.

            Kristen will give you a schedule of appointments for the week.  The amount of time she blocks for every appointment is just an estimate.  Appointments may run long or short depending on the circumstances.  Just pack a lot of patience with you.

            Make a list of questions and take them with you.  I emailed our questions to Dr. Han in advance and she forwarded them to each doctor.  The physicians were able to address our concerns at each visit.

            Don’t worry if your child refuses to do something.  We just tried to go with the flow.  Fortunately for us, Nicholas managed to get through everything that was on the schedule.  It might not be the same for every family.

            Kristen was our go to person.  She kept things on track and we could always contact her with any question or concern.

            The TV’s in the hospital room can also play DVD’s and be used as a computer.  You can ask the nurse to bring in a mouse and keyboard if your child likes to play on the computer.

At the Children’s Inn –

Every morning (during the week) there is always orange juice, coffee, tea and small muffins available in the lobby area.  Throughout the day there may be cookies or light snacks available.

We were able to do laundry a few times during the week.  However, empty washers and dryers were more difficult to find mid week.  Clem and I took turns running back and forth from the hospital to the Inn a few times to do loads of laundry while Nicholas was having tests/procedures done.

There are a number of activities that go on at the Inn during the week (Bingo, ice-cream social, parent gatherings, sibling activities, etc)

Prior to your arrival –

Dr. Han will contact you by phone to go over the procedures/tests.  She will ask you to provide medical records for the previous year.  She will also ask you to keep a 3 day food diary on your child.  (either Thursday, Friday, Saturday or Sunday, Monday, Tuesday)

Favorite Memories

The number of times we rode the elevator up and down to kill time.  Nicholas would always ask the people that were getting on “What floor?” and tell them to have a nice day when they got off.

Being asked by a couple for directions to Phlebotomy as I rode down the elevator by myself.  I was happy to oblige.  (They thought I worked there)

When Nicholas was asked by a nurse about his sister – He told her that he missed her but that he had to go on vacation for peace and quiet.  Ashley was getting on his one nerve.

Sitting in the Audiology waiting room and listening to Nicholas asking Clem over and over again if he wanted a beer.

Hearing Nicholas ask Miss Kristen if she would cover his shift at the hospital on Saturday because he had to fly home (he was pretending to be a doctor at the time).  She politely said yes.

Just having the ability to watch Nicholas interact with Amy and Irma.  At one point I told Amy that I was going to start calling her Ashley because they were acting so much like sister and brother.

Our NIH adventure was an exhausting but awesome experience.  Somehow just like with everything else, we found the strength and energy to get through each day.  I can remember lying in bed earlier in the week thinking about how I would have given anything to participate in a research project on WAGR Syndrome.  Our dream had finally come true.

WAGR Syndrome is a part of our life.  We have just come to accept things for what they are.  Nicholas proved to us again what a special boy he really is.  He completed everything that was asked of him.  We love him and Ashley more than anything in the world.  We can always count on Nicholas to make us laugh and smile.  I will never get tired of hearing him tell me that I am the best mom.

Nicholas and I were so lucky to have Clem accompany us on our trip.  He is my rock and tries very hard to keep me sane.  I know I make it difficult at times, yet he is always there to love and support our family.  I am so glad that God has blessed me with such a wonderful husband.

We are happy to share our NIH experience with you.  If you have any questions please feel free to contact us at TheMooZoo@aol.com.  We have also posted additional NIH photos in the WAGR group photo album.