NIH

Last week Tyler, Lauren, my Mom, and I flew to Bethesda Maryland to the National Institutes of Health. We were able to participate in a study they are doing on Bardet-Biedl Syndrome. I have been working towards going on this trip for over 10 months now. I have had soooo much anxiety over many aspects of it. The travel made me nervous, navigating my way around a new place made me nervous, trying to make the kids do all of the procedures and tests that needed to be done made me nervous. I was a nervous wreck by the time we left. My biggest worry was that I wouldn't be able to get Tyler on the plane. He has been known to refuse to get on things before like trains or buses so the plane made me worried. If he refused I didn't know what I would do. I considered medicating him and Lauren to make things easier but the medication made both of them dizzy and that made me worry about them getting sick on the plane. Do you see a general theme here of me being nervous. Seriously, I cannot think of a single event that I have worried about more than this! Nate gave Tyler and I blessings the night before we left. I felt a nice calm feeling come over me and I felt like we were going to be ok.

I was so proud of Tyler and Lauren on the plane. They were so good! Tyler got a little nervous getting on but he kept telling himself that he was brave and he was strong. It was really cute.

The plane ride was uneventful and we caught the right shuttle to NIH from the hospital and we arrived at the Children' Inn around 6:30pm sunday. The Children's Inn is a place for families to stay while they are patients at NIH. It is a great place. Tyler was very excited to find the game room he had seen online. He also LOVED this super mild therapy dog.

Lu loved the playroom. It had a treehouse in it where she loved to play.

She loved the "Woody hat" and this fun life sized light bright thing.

We started our appointments on monday morning. Tyler was amazing. He was calm and so willing to do whatever we asked him to do. He was able to do every test that was scheduled for him. I was certain there were a few he wouldn't be able to do but he surprised us all and did them. Between monday and thursday he had a physical exam, blood draw (13 viles to fill and 3 different attempts,it was not fun!), DEXA scan to measure bone density, Abdominal MRI and brain MRI, 2 different ultrasounds, x-rays, EKG, Psychological testing, Audiology testing, Opthamology appt, and a couple of other appts that I went to and he had to wait in the waiting room with Lu and my Mom for hours! I am so proud of him and what he did there. I know that he was strengthened and calmed as a result of so many prayers on our behalf. It really was amazing. Here he is waiting for an appointment.

He loved that some of the offices had complimentary drinks!

Then there was Lu. Wow, was she the opposite of Tyler. She was scheduled for all the same appointments as Tyler but I think the only thing she did was the psychological testing. She threw a royal fit anytime anyone tried to touch her. Luckily we had scheduled for her to be sedated for her opthamology appointment at the end of the week. We decided to do as many tests as possible while she was out. She ended up having her eye exam and ERG, MRI's, blood draw, and physical exam while she was sedated. It was a wonderfully calm and relaxing few hours for me while she was out! (Is that wrong of me to say?) Here she is just before the sedation.

Did I mention that she watched a Bugs Bunny movie about a million times on the IPad? She called it "carrots" and she watched it all the time!

We got some great news that Lauren's eyes seem to be fine. She doesn't have Retinitis Pigmentosa as of yet. The opthamologist said he would love to do an exam in a few years and see how things look but for now she is just fine.

Lu recovered from the sedation just fine for a couple of hours but then she seemed to struggle. She started shaking really bad and she could not stay awake. It was a little concerning but it was also really cute to have her cuddle and sleep on me and my mom.

Even the day after the sedation she seemed really out of it still. I am counting that as a blessing because we flew home that day and she was an angel through it all. We had 2 flights and I don't think she even said 2 words or moved off my lap during either. By this morning she seemed to be back to her normal self so I'm not worried anymore.

The entire week was so exhausting for my Mom and I. The days were long at the clinic and then trying to entertain the kids in the evenings was draining too. My Mom was a fantastic travel partner. She and Tyler were buddies and I took care of Lauren most of the time. My Mom was a great support to me and I loved being able to share this experience with her. She was our navigator and found ways for us to get out for dinner or get to the grocery store. She was so great to entertain the kids in waiting rooms when I was meeting with different specialists. I really enjoyed getting to spend the week with her.

I also have to share these pictures because they are perfect representations of the week. These are their security badges they had to wear all week. Tyler didn't go anywhere without his elephant. He even held it during his MRI's. And Lauren, well the picture says it all!

Even though the experience was very exhausting and difficult I am still so glad that we had the opportunity to go. I thought I would come home with tons of new information about the syndrome but I don't feel like I did. I did learn some things but I found out that I already know most of what there is to know about the syndrome in general. I realized that I need to shift my focus from general information to more specific information about what is going on with my kids. That is what I did find out this week. I found out the Tyler is already showing some pre-diabetes signs. I feel a real urgency to change some things in our diets to make sure he is healthy. I also found out that generally my kids are doing really well. Their hearts and kidney's are fine. Lauren's eyes are fine. And although Tyler does have the eye disease his vision is quite good still. I learned more about genetics and how the syndrome was passed on too. We didn't get the result of the genetic testing yet. That could take a few months to get.

The most important thing I learned this week was something that I already knew but was reminded of many times this week. I re-learned that I have been guided and directed by the Holy Ghost so many times as a parent to these special kids. I was able to think through our journey from the time Tyler was born until the now and was able to recognize that my mind has been enlightened by the Spirit. I've been lead to different things at different times that have been beneficial for us. As I've looked at the past 10 yrs it's so easy to see how blessed I've been. I feel really grateful for the renewed appreciation for the gift of the Holy Ghost.

On the flight home there was a beautiful sunset somewhere over the midwest.

I was so excited to get home and see Nate, Alex, and Abby. I was also very excited to sleep in my own bed without Lauren!