Cheetos Puffs & The Pool!

Swimming with Lexi! This was her first time in a pool.

Alayna enjoyed it for awhile, but it really seemed to wear her out fast. It helped so much that she would keep her sunglasses on! And the toy to distract her and keep her focused helped too.

Patti and Lexi helping Alayna in her new float. It was nice, but she is now strong enough that she needed to sit deeper in the pool. I have a different float that I used with the other kids that we need to give a try!

Alexis, Douglas and Alayna! They enjoyed that the water was about 90 degrees!

Alayna's sitting independently has significantly improved! I will now put her down on the floor with toys and walk away! If she falls, she is pretty good about trying to slow her fall. And she sometimes likes to fall down and she giggles! I'm guessing, but I think she can sit anywhere between 5-10 minutes before crashing.

Her balance is improving and her butt isn't as "round!" She is becoming more aware of her arms and actually using them to keep her up. If she'd just keep one of them out of her mouth she'd have 2 free arms and not just one! This would help.

Whatcha' doing mom?

Alayna laughing! Sometimes she laughs and giggles at the craziest things. It's so innocent and I love it. She makes us all laugh too. Alayna can leave us all guessing at what was so funny!!

Yeah, Alayna has conquered the Cheetos Puff!!! I was getting very frustrated as to why she wouldn't eat anything "dry" like a cracker, fruit puff, or Cheetos. I tried giving her a bite one day and she shut her mouth tight. I finally decided that this obviously wasn't working, so I put 2 Cheetos in front of her on her tray. I figured that when she was ready she'd grab them. I didn't expect it would have been that same day, but she did! And here she is checking it out and eating it. I was in HEAVEN!

Alayna gets very messy between the cheese and the milk everywhere, but I don't care. She is still working on eating the entire cheeto. Right now she seems to eat the part that only sticks out of her hand and then drops the other part on the floor. So, getting that other part up into her hand higher is something we'll work on.

She does pretty good passing it from one hand to the other until it gets too small and it is hard for her to hold on to and bite off.

Yummy! I can't get the Cheetos bag out until after she has eaten her meal. She recognizes it now and she would obviously prefer to eat them over any vegetable!

A HUGE challenge we are having right now is keeping the bib on. Alayna has found the bib and loves to play with it and rip it off. These velcro in the back and I need to find one's that either snap or are like a towel that go over her head. That way they won't come off!

At PT, Alayna has been doing great. She is bearing more weight and standing at this table and playing. We are excited about seeing this. Last summer we just wanted Alayna to hold her head up!
Alayna has on knee immobilizers that don't allow her to bend her knee. It also helps the person working with her free up their hands!
She continues to love toys that make sounds and have lights! I noticed many of us parents at the 1p36 Conference had alot of the same toys. It's a common fascination of all of our kids!
Big girl! When Alayna stands up she looks so tall. We'll keep working and she'll get there! Coming up October 12th, we have her IFSP meeting to begin talks about pre-school placement. That isn't far away!

Alayna is doing good. I hope you enjoyed the photos and updates of what has been happening. We are now all back to school and Alayna starts her "babysitter" routine tomorrow. She will be going to Grandpa Denny on Monday, to Grandma Billie on Tuesday, and to Patti on Wednesday-Friday. Her PT and OT/ST at the CTC will continue as well as her developmental therapy in the home. Alayna is making gains and we love to see her progress. I am dreading the upcoming "flu season" and will work very diligently to keep the home clean and everyone's hands washed. Tis the season to be exposed to more germs. I say my prayers that Alayna and everyone else will stay healthy! I will update again sometime soon!

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!

We Are Heading to Indianapolis!

Alayna can finally grab her own pacifier with about 95% accuracy on getting it to her mouth! Anything helps and yes, it is a milestone in her book.

Sweet little Alayna right after an evening in the bathtub. She still loves it!

Alayna's sitting is so great! She can sit unassisted for minutes at a time. Sometimes she still will lose her balance, but she is more apt to putting her hand down to recover her fall. She is definitely getting it!

PT Update

Alayna has been improving so much over the summer. It's like stuff is finally "clicking." Whether it be from a simple thing like grabbing the necklace I am wearing to bearing her own weight as she stands at the couch it is exciting progress to brag about! At PT she has been working on standing in her AFO's and playing at a table and then even taking a few guided steps. She has been initiating the stepping a little on her own and even demonstrates shifting weight from side to side. We use knee immobilizers to help keep her legs straight and not allow her to bend the knees. It also helps free up our hands to work with her easier. I don't have a picture of her in those yet, but I will try to post one soon. In addition, her sitting has improved considerably over the past few months. She is becoming more aware of her arms and hands and being able to use them to stop a fall. Alayna lacks strength in her arms because she hates to be on her tummy and use them, but hopefully with the sitting it will improve. We keep trying to get her on all fours in a crawling position, but she doesn't like it at all. I'm beginning to think that she won't crawl at all. Maybe she'll be one to scootch on her bottom and walk instead!?

Eating and Drinking

Alayna loves to eat and she is getting better at it everyday. I no longer have to mash up macaroni and cheese or a noodle bucket with a grinder. She'll eat it the way it is! And she'll take it in by the spoonfuls. She is becoming an expert on using the sippy cup too. My only complaint is that we need to work on sitting it down nicely on the tray and not tossing it to the floor!

Sleeping & Napping

Alayna's sleeping has been pretty good lately. I can't remember the last time she was up in the middle of the night. She still likes to get up early every now and then, but it's not been bad. Her napping has improved because she seems to be getting on a schedule...finally! Her afternoon nap is getting longer and she'll usually sleep for 1-2 hours. It puts her in a much better mood. She is still not like most 2 1/2 year olds though. She naps frequently!

Indy....Here We Come!

On Friday, we are heading to Indy to the 3rd Annual 1p36 Conference to see our "extended" family. We are taking all 4 of the kids and both sets of our parents are going too. I am so excited to see everyone we know and to meet the one's that we don't know. There are about 35 families coming from all over the US and the kids range in age from 7 months old to 21 years old. Many of the kids are young like Alayna and so it is a nice opportunity to share ideas with others and learn from their experiences. It is such a valuable thing for us to have this support group. I can't imagine doing it alone with no one to relate to. I will definitely post pictures and a recap of our weekend when we get back!