Recap of 3rd Annual 1p36 Conference

Alayna and Lily enjoying their strollers!

The very inspiring Callie (21 years old)!

Alayna so happy on Friday evening!

Gavin (4 years) is now walking! Yeah!

Lily (2 years) is crawling everywhere! Yeah!

Tru Legacy (4 years) getting ready to swim.

Sophie (7 years) enjoying the pool with dad.

Whitney (5 years) a.k.a. "Miss Giggles" getting ready to eat dinner.

Sweet little Jaylyn

Aiden (2 years) has the most beautiful eyes!

Jordan (14 years) enjoying those delicious cookies!

Lexi (16 months) is from Wales, UK. She is so precious. And I loved her painted fingernails!

Maya (5 years) takes a break on Grandma! We love grandmas!!

Ben enjoys playtime and his pacifier!

Maxx (2 years) enjoys playtime too next to Ben!

This little one is Silver (6 years). Her name is so unique and lovely and I'll never forget it. It was neat to watch her sign back and forth to her mom. She always seemed so curious about all the little ones. Cute!

Zoe (2 years) shows off her toothy grin! Lovely blue eyes.

This is Riley and she is 16 months. She is so sweet. I noticed she has an angel kiss on her forward like Alayna. And she also has a helmet like Alayna did.

Gabrielle "Bella" (7 months) is so sweet. Many of our kids have NG tubes for feedings. With patience and perseverance they will someday eat orally!

This is little Abby (3 years). She is one of our smallest kiddos, but she has a huge heart and is so precious. She looks like a little porcelain doll.

Tabitha is 5 1/2 years and is so cute and has lots of dark hair. Alexis loved her!

Jamari (2 years) camps out in her stroller. The conference wore the kiddos out! I love her hair.

Look at her precious little face! She was looking so innocent at me, awh. This is Kate (6 years).

Collin (3 years) was a riot! Just look at this boy! He is so sweet. He has plastic glasses because his mom said he kept breaking the other frames. They fit him so well. And he speaks which is amazing. He said "mom, popcorn", "oh my gosh" and "helicopter." I couldn't believe how clear he said helicopter! Wow!

Okay, look at this little one's blue eyes! She is adorable too. Her name is Kaylee and she just turned 1 year old!

This is Vanessa (2 years old) and she is just as sweet as can be too.

Kaylee (little Abby's big sister) holds Alayna. We love that Whitaker family!
Alayna had a long Saturday at the conference and she is in her P.J.'s and ready for bed! I was tired too, but it was so worth it!
Hailie (2 years) and Alayna playing on the floor Friday night. All the kids love toys that have lights and sounds. Many of us had the same ones.

What I Learned From the Conference

The experience to meet other families with a child like Alayna is priceless. It makes our whole journey seem comfortable, doable, and "normal." These people understand. There is no explaining of Alayna's condition. It's more a time to exchange information and ideas of what works for these children. It's a time to comfort and support each other. They truly feel like family. When I entered the conference room it seemed like I knew everyone already. Some of the families I had met 2 years ago in Florida, but many were new faces. That sense of family comes from being a part of our yahoo support group and even though we mostly know each other through posts it is the most valuable thing to me. Relationships build over time and connections are made via the web! It's amazing and I'm so thankful to be a part of it. Like one doctor said, "You are the pioneers of 1p36. You all are making a difference. The data from you will show up someday in medical books."

Our 1p36 kids are all so precious. They all resemble the families they come from, while at the same time sharing similar facial characteristics that make them look so "alike." When you look into each of their eyes you see the innocence and the love that they have. Each has a way of touching the lives of people who surround them. They are amazing little miracles who are so strong. Some of them fighting for their lives, some learning how to drink and eat, and some trying to get through the day without having a seizure. These kids have a will to fight that is untold.

One of the first things I learned is that it is correctly pronounced 1-p-3-6, not 1-p-36. It has to do with chromosome 1 having 3 bands in it and not 36! I found that interesting and I'll try hard to say it correctly from now on.

One of the speakers was a MetLife financial advisor and he brought so many things to our awareness. I had no idea that federal law says that if we are leaving more than $2000 to a person with a disability that they automatically lose eligibility for most government benefits. "The $2000 limit. It's the law." That is something that we need to be advised on and learn more about. He highly recommended that we set up a Special Needs Trust in Alayna's benefit. This will enable Alayna to access public benefits and not be forced to the $2000 limit. It was interesting because even if grandparents or whomever leave any money to Alayna it needs to be in the trust's name and not hers. He also encouraged us to explore Medicaid Wavers in our state. Illinois has a waiting list, but we need to get her on that list. It can help provide services in our state that we may not be accessing. And this is beneficial since she will be through with Early Intervention at age 3. Dana and I need a will. I can't believe I'm admitting that we don't have one, but I am. We have paperwork sitting here to start, but we've never got around to following through with it. That is a priority now. In addition, a letter of intent is definitely needed. It is the "how to" template and it explains who should take care of Alayna. So, I found this financial seminar of special needs estate planning very beneficial.

Dr. Lisa Shaffer is the doctor that has been studying our 1p36 kids for the past 10 years. She is so unbelievably committed to this task and we are so grateful. She has made all 3 conferences so far and we thank her for that. She reported that she has diagnosed approximately 300 U.S. families with 1p36. I thought Alayna was enrolled in her genetic study, but after talking with her realized that she isn't. Dr. Shaffer diagnosed Alayna but I have to give the okay for the study. So, in order for that to happen I have to contact Dr. Shaffer and sign a consent form allowing her to access Alayna's medical records. Then Dr. Shaffer will take the results of Alayna's genetic test and put it up next to everyone else's. She can then use the data to compare and contrast symptoms and determine which genes are responsible for facial features, heart issues, seizures, etc. There is alot of work to be done, but it is hopeful and it is really interesting! One other thing Dr. Shaffer said that took many of us by surprise was that parents who have a child with 1p36 have a higher chance of having another child with that same condition. Many of us were told we had no higher chance than the normal population, but that isn't quite the truth. We have about a 1% higher chance than any other couple. Now that isn't a very high percentage, but it isn't 0% either. For those planning another pregnancy it wasn't what they necessarily wanted to hear. But it wouldn't have stopped me if we weren't done having children. And for those wondering, no Dana and I do not plan to have anymore children!

Some of the little things that will make a big impact on Alayna have to deal with vitamins and bowl issues! Alayna has been on Myralax, which is a very safe stool softener, for quite awhile. Constipation is an issue for most of our kids. However, I was following the directions and not mixing it in her milk because it advises not to. I never questioned it. I thought it had to do with a reaction or something. Thankfully though we were told that mixing it with milk was just fine and lots of parents were already doing that! Let's just say I was thrilled to hear this because milk is what Alayna loves to drink and now I know she'll get her complete daily dosage. Otherwise, I was putting it in water or juice and she wasn't always getting enough to keep "things" moving consistently. I also wondered what was the best way to get Alayna a daily vitamin. She obviously can't chew one and I hate Polyvisol drops (they are gross). A few moms said they crush a Flinestones and put it in their yogurt. I've now done this the past two days and she eats it fine. That is a huge relief to know that I am giving her the needed daily vitamin to help her stay strong and healthy.

Communication is such a key thing for our kids to grasp. I really won't care what form it takes shape of for Alayna. I will be thrilled with pointing, sign language, or someday talking. What I took away from the conference was the idea of how important pointing is. It truly can be key to letting them tell you their needs. I've been working on isolating Alayna's index finger to begin pointing and it is hard. She has tiny fingers that don't like to do separate things. But we will continue working on it. In the near future I plan to take pictures of family members and everyday things Alayna uses or likes and laminating them. That way she can identify and point to what she is trying to communicate. It would be nice to have 4 sets of the same photos for all her caregivers to have at their house too.

Dr. Perszyk is a pediatrician that has been following many of our 1p36 kids since the first conference in 2007. He has been collecting data on height, weight, and head circumference at different ages from our kids records. His goal is to develop a growth chart that would be specifically for 1p36 children and fit them better than the "typical" growth chart used for "typical" developing children. Many of our kids fall below the curve on these charts if they are even on the chart to begin with! He was very motivational in the fact that he told us our kids were "going to get there." He said: "They take longer. The brain is delayed and immature as well as their hearing and vision. All of these things are related, but don't give up! So we have some work to do. A chromosome break isn't the end of the world. These kids do far more better than they are given credit for early on. They prove us wrong." We will never give up on Alayna. It isn't an easy task to stay so positive all of the time, but I do have the faith that she will prove herself to be a wonderful, young lady someday.

In conclusion, we continue to learn through this journey God has put in front of us. God's grace is seen through Alayna and all of her 1p36 friends. Without our faith and his strength this task wouldn't be possible. I am blessed to have a beautiful family and I enjoy watching us grow through this experience. This conference opened the eyes of my older three children even wider than before. They embraced the other 1p36 kids and enjoyed interacting with each and every one of them. It didn't matter if they crawled or sat in a wheelchair. In their eyes, they were all the same and they like each of them equally. I loved that. It was amazing to watch them.


Wow, this is a big post....sorry!