A visit to the zoo

A couple weeks ago we decided to get a family pass to the zoo. Sophia is old enough to enjoy all of the animals and Gid loves seeing them all. Today was our second trip since we got our passes.

Last night and this morning, before we left the house, we had decided what animals we wanted to go visit. Because of that, we had a plan for what we wanted to see and it helped ease the stress of being around so many people.  We were able to enjoy ourselves and time there and focus on all the neat things.

We got to see the elephants eat some peanuts,

and the baby orangutan.

The polar bear was taking a nap, along with the brown bears.

The otters were inside, so Gid had me take a picture of him with the little otter statue instead.

The one animal Gid was really excited to see was the alligators. I think the one is trying to dunk the other with the way he has his front leg on the back of the other. :)

In the end, not feeling rushed to see every animal is such an amazing feeling. We were able to enjoy our time at the zoo and take note of the animals and other things that we want to see and do for our next visit.

I love seeing how happy the kids are when they see an animal that excites them. Sophia loved seeing the baby orangutan and the elephants. Gid was happy to see the alligators, turtles, and the bats. Silas really wanted to see the zebras and the sea lions. I am always excited to see the polar bear and Jen's favorites were the elephants and the momma and baby orangutans.

It was also fun to watch Gid and Sophia follow a turtle that kept walking back and forth along the window of the exhibit. At the end, we went to a bridge that goes over the little railroad so that we could watch as the train went underneath us. Sophia was so excited to see the train, but then so upset when it went away and she couldn't be on it. I think we will have to make sure we ride the train on our visit.

Cri du Chat... Part 3

I realized that I kind of left the last post right in the middle. When I was first writing it on my lunch break, doing so made sense to me. The next part of the story all go together, and I don't want these posts to be extremely long. Now, back to the story.

When Gideon's surgery was completed the set us up in a recovery room to wait until Gideon was stable enough to go home. While there, the nurse in charge of the Cleft Clinic came to the room to talk to us about what had happened that day. She also said that she would call a geneticist to come talk to us.

The geneticist's office was only a block or two away, so we did not have to wait very long. He showed up shortly after the nurse had talked to us. They took a blood sample to test if Gideon did have the suggested disorder.

The doctor then sat down with us to briefly answer our questions and outline what to expect from there. At the time, he would not confirm that Gid had Cri du Chat, but he did say that our son had many of the characteristics and symptoms. The test would take up to 6 weeks for us to get results back. Once he had them, his office would call us to setup a meeting with the doctor to go over those results.

Fast forward to our appointment with the geneticist. The doctor confirmed what we had already decided was fact. The way that he did so was what was different than most stories that I hear, even of babies as recently as this year.

He did what any good doctor will do, he gave us the facts, told us the unknowns, and encouraged us to work our hardest and be the best parents we could be for our son.

All of the research and medical data about children with CDCS was about 35 years old. The syndrome was not separated and defined until the 1960's. medical advancement's had nullified much of that research. The doctor did tell us what that research said, but he reminded us of these facts and that instead of expecting the worst, we should just deal with each challenge as it came up. He had us setup appointments with other doctors to check the general issues that kids with CDCS had in the past. He encouraged us to meet other families in the area that were in our same situation and gave us some phone numbers we could call.

We later found out that this treatment of the situation was far from the norm and a much better experience than many families have. Many doctors only have a cursory knowledge of CDCS and turn to all of the research that is out there in order to determine what they should talk to the family about. They end up telling families with a newborn baby that many kids have a failure to thrive and that the life expectancy may not be much more than a year. This is probably the worst misconception out there. That expectancy was based on research where a lot of other medical issues were untreated or misdiagnosed.

On thinking back on my initial thoughts and feeling, I am so grateful for the nurse and her careful way of letting us know her suspicions. I am glad that the geneticist encouraged us not to listen to the old research, and instead to focus on our son's future and on the accomplishments that he makes. I believe that has influenced every thing I do for Gideon. I hope that all medical professionals can act as these two did.

Cri du chat... Part 2

We didn't know before my son was born that he had a genetic disorder. During the standard ultrasound at 20 weeks, during his mom's pregnancy, we were treated to an awkward moment when the technician determined that Gideon had a cleft lip and possibly palette. After waiting about 30 minutes in the room alone, the tech came back and sent us home and let us know that the doctor would be calling us in a day or two. It wasn't until the call from the doctor that we learned of the cleft lip.

The next 20 weeks were spent learning about what we could expect for our son, preparing physically, mentally and emotionally for the birth of our son. I don't remember the specifics of how I was feeling, but I do remember wondering what my reaction would be. When he was born all of my worries were pushed aside as I found that I had nothing but love and a deep desire to protect this beautiful baby boy.

Gideon was only 5 lbs when he was born and the cranio-facial team doesn't like to perform any corrective surgeries until the child is at least 10 lbs. It took Gideon 3 months to gain the weight and then he was finally ready for his first surgery.

The day finally came. We got up early to go to the hospital, full of nerves and worry. It was the admitting nurse that first recognized several things. She came in to the room where they got all of Gideon's vitals and had us change him into a hospital gown. She couldn't really tell us what she suspected, but she felt that she should let us know since she was also going to talk to the anesthesiologist. Based on Gideon's cat like cry, facial features, among a few other things, she thought that our son had a rare genetic disorder called Cri Du Chat Syndrome.

In that moment, our nerves and worries were expanded at least a hundred fold and now we added to that question upon question. As soon as our little baby was taken by the hospital staff for his surgery my wife ran up to the computer area setup for families of children in the hospital to research this syndrome that neither of us had ever heard of before. 

I handled the revelation in my own way. I hid from it at first by watching a movie while I waited for the nearly 2 hour surgery to be completed. In the back of my mind I knew that what the nurse had told us was the truth, but there was no reason for me to be that concerned with it at that moment. There were enough other things to fill my mind with worry. I would sort out these new feelings when I had time for them. When my wife showed me the results of her research, it only confirmed what the nurse had said. Images of other children with Cri du Chat looked extremely similar to our son.

Cri du Chat, my experience Part 1

I have been thinking of both writing down my thoughts and experiences as well as posting some videos about being a parent of a child with special needs. I know that it has helped me to read and listen to other parents experiences, and I hope that by doing this, I can help others.

About 3 years ago, I posted a video on YouTube of my son's cry when he was a baby. It is a very distinct cry that we eventually found out was indicative of the genetic disorder that he was born with. It has since had nearly 200,000 views. Many of those views have come from either healthcare professionals or those studying to enter the healthcare field.

Currently there is a lot of misinformation out there regarding cri du chat (cree doo shaw),  french for cry of the cat, because the only research was done in the early 1970's, and a lot of secondary conditions were either missed or misdiagnosed. I hope that I can dispel those misconceptions with these posts.

Un Nouveau Début

Should I start this again? It's only been almost 5 years since I last posted anything here and a ton has changed. As I have said previously, I think it is good to write down the things that are in my head to be able to express them and get them out. If I don't, then things will just float around willy nilly in my head.

The main reason that I am writing this is because my wife just started her own blog and it made me think about this one.

My life has gone many places in the last 5 years. I last posted right before I graduated. It makes me think of the question you get in school and at job interviews. "Where do you see yourself in 5 years?"

Well, I did not see myself divorced and re-married. I did think that I might have another child, but could only hope to have a daughter. I did not see myself in 3 different companies. I did not see myself moving 3 times.

There are so many things that I am thankful to have gone through now. I feel that I am a better person for all of the experiences I have had these past 5 years. I have a wonderful family, both old and new, related and semi-related. I love them all and am thankful that they are in my life. I have a beautiful, wonderful wife who I should tell more often how I feel. She has done so much for this family since she agreed to become a part of it. I love my boys and seeing them learn and grow every day. I love my daughter even though it scares me to have one :)

No boundaries... If I post, then I post. If you don't like that(meaning myself) then move on.

3 days

If I can finish my last paper by thursday, then I can consider my undergraduate career complete on Thursday. That is such a relief. I can't wait to be able to come straight home after work and not have to worry about the reading or paper that I should be writing.

Over the last 2 and a half weeks I have spent a majority of my time writing the two most difficult papers I have ever had to write, One was difficult because it was a format that I was not used to. The other, was mainly because I disliked the teacher, and through thta dislike, the class. Most of all, they were probably difficult because of my strong case of senioritis.

Now I see the light at the end of the tunnel and I can only pray that the paper I finished this evening will be good enough to ensure a C or better. If not, then I will be saying bood-bye to freedom for 1 more semester and I don't think I could take one more.

photos

because mom asked...