The First 1p36 Newsletter, Fun Pictures, and more....

Alayna is doing much better sitting on the floor and playing. She lasts a bit longer now before falling over!

Alayna tired and trying to find mom!

It was cute. Alayna was sitting so well that she even used her foot to kick the toy and get it to play. I had never seen her do this before. I was impressed because it took some balancing to do.

Alayna is now really good at finding her pacifier and putting it in her mouth. She even turns it around and passes it from one hand to the other in order to successfully get it in her mouth.

Alayna is starting to use her hands for more balancing and not relying on her little round bottom.

She still LOVES toys that light up and play music. This is her favorite V-tech book. I think she'll love these types of toys for a very long time.

Another V-Tech treasure that I found for $3 at a yard sale! And it is a book with more pages for her to turn. She loves it. It reads each page to her and will sing a song if she pushes the right button. I love it and it was a bargain!

So cute! What a sweet little face.

Okay, one issue we have to battle is her wanting to chew on all of her books. Everything still goes in the mouth. This one is fine because it's plastic. But we have a Disney Princess book that has teeth marks everywhere and I think she's even digested some cardboard from it! LOL.

Sleeping Issue

We continued to battle Alayna's sleep schedule back in July/August. She was waking up in the middle of the night or early morning very unsettled and unable to fall back asleep. It was getting frustrating and we tried everything. Well, let's just say......nearly everything. One thing we never considered was that she might be waking up due to hitting the sides of the crib or getting a leg stuck in between the slats and not being able to free herself. She normally falls asleep down on a palate of blankets in the living room near the television. It's just always been "her spot" to go to bed. Typically I would then carry her up to her room for the night. Well, one night we just decided to not move her and leave her there. I brought the monitor down to the living room so I could still hear her. We were desperate for a good nights sleep. And we were thrilled when she slept until 7:15 am the next morning! So, for now her bed has been on the living room floor and she has room to roll around without feeling confined. I know that sounds kind of cruel, but whatever it takes is our motto. And she's safe and warm.

IFSP Meeting - 6 Month EI Review

Next Monday we have Alayna's 6 month review through Early Intervention. We are meeting with her EI coordinator and therapists at the Children's Therapy Center. I am excited about this meeting particularly because we start talking about pre-school. Again, it is our hope to have Alayna attend SKIP (Special Kids In Preschool) in Moline, Illinois. And our hope is that she can be bused in to SKIP and brought home at times that are accomodating with everyone else's schedules in our very busy family! I'm keeping my fingers crossed that it all works out. She can attend every day from 8:30am-2:30pm. That will be a long day for her, but I do think the benefits will far outweigh the downfalls. Plus, who knows, maybe she'll be extra exhausted and sleep even better! I will definitely post on how things go. In about a week and a half, we meet with the principal of one of our local elementary schools because he is the coordinator of the preschool program for the school district. He will probably be able to provide us with more information. The earliest Alayna would begin preschool is February 1st, 2010. That will be here before we know it!

Spongebob Squarepants!

I have to end the post on a funny note. My other three children watch Spongebob all of the time. If it isn't on at home, then a DVD is on in the van. It's either that or iCarly. Well, Alayna now recognizes the theme song to Spongebob. When it comes on, she instantly freezes and turns to watch the TV or listen to the music. She will wait until it is completely over and then resumes what she was doing. It cracks us up! I love that she recognizes songs. It's one good sign to learning!

1p36 Newsletter

As I've mentioned so many times, we have such a wonderful support group of 1p36 families from all over the world. We chat online on our yahoo support group website and most of us are on facebook too. I can not tell you how much this means to me. I don't know what I'd do if I didn't have these people to go to. One of the group's goals was to start doing a newsletter. The first one just came out. Please check it out! The contributors did an amazing job. It's at http://www.1p36dsa.org/. Just click on "services." This is our new website for the group which is now called 1p36 Deletion Support & Awareness and is a non-profit organization dedicated to helping others.

A New Swing Is On the Way!!

I apologize for being behind on posts. Getting back to school and work has kept us so busy and computer time is slim to none. By the time I get a chance to get online, it's late and I'm exhausted! I do have a few new pictures that I'll try to put on the blog this weekend. I don't have them loaded onto the computer yet....so check back on Monday! Thanks for being patient and for continuing to follow Alayna's journey.

I do want to show you the new swing I just ordered for Alayna. As I've posted in the past, she LOVES to swing. I know she misses it. She still sits in her baby swing, if you can believe that (she's 2 1/2 years old)! But she is too big and it doesn't move anymore! She uses her feet and tries to "pump" herself and push her toes off of the floor just to get herself to go. It's cute! Well, she won't have to do that anymore. This new swing is called the Biggie Adapted Swing by Abilitations. That is a division of School Specialty which we order school supplies from. I found that interesting! Anyway, it is to be able to support 2-10 year olds and has lots of neat features. Here is a picture. Now we just have to wait for it to arrive. And yes, it is for indoors so she can use it all of the time. I am so excited. It's an early Christmas gift!

Now, I'm switching topics. Our support group has had quite a few "new" members in the recent months. Finding out that your child has a disability is one of the most difficult things to deal with. One of the mom's posted this grief model. I found it so fascinating that I wanted to share it with you. As it is written in terms of losing a loved one, those of us who have learned we have a disabled child has lost the dream of the "typical child" and the "what if." So, I think the language is adaptable to our situations. In the beginning I did feel robbed. But I don't feel that way now. In 4 months, Alayna will be 3 years old. I still am going through some of these stages. As I read them, I realize that I bounce around from one to the other depending upon the given day. Some days I'm angry and mad and yet others I show acceptance and I have hope. I wonder if I'll ever complete the model?

"The 7 Stages of Grief"...

1. SHOCK & DENIAL-You will probably react to learning of the loss with numbed disbelief. You may deny the reality of the loss at some level, in order to avoid the pain. Shock provides emotional protection from being overwhelmed all at once. This may last for weeks.

2. PAIN & GUILT-As the shock wears off, it is replaced with the suffering of unbelievable pain. Although excruciating and almost unbearable, it is important that you experience the pain fully, and not hide it, avoid it or escape from it with alcohol or drugs. You may have guilty feelings or remorse over things you did or didn't do with your loved one. Life feels chaotic and scary during this phase.

3. ANGER & BARGAINING-Frustration gives way to anger, and you may lash out and lay unwarranted blame for the pain of loss on someone else. Please try to control this, as permanent damage to your relationships may result. This is a time for the release of bottled up emotion. You may rail against fate, questioning "Why me?" You may also try to bargain in vain with the powers that be for a way out of your despair.

4. "DEPRESSION" , REFLECTION, LONELINESS-Just when your friends may think you should be getting on with your life, a long period of sad reflection will likely overtake you. This is a normal stage of grief, so do not be "talked out of it" by well-meaning outsiders. Encouragement from others is not helpful to you during this stage of grieving. During this time, you finally realize the true magnitude of your loss, and it depresses you. You may isolate yourself on purpose, reflect on things that could have been, and focus on memories of the past. You may sense feelings of emptiness or despair.

5. THE UPWARD TURN-As you start to adjust to life and kind a daily routine that works, your life becomes a little calmer and more organized. Your physical symptoms lessen, and your "depression" begins to lift slightly.

6. RECONSTRUCTION & WORKING THROUGH-As you become more functional, your mind starts working again, and you will find yourself seeking realistic solutions to problems posed by life's situation. You will start to work on practical and financial problems and reconstructing yourself and your life.

7. ACCEPTANCE & HOPE-During this, the last of the seven stages in this grief model, you learn to accept and deal with the reality of your situation. Acceptance does not necessarily mean instant happiness. Given the pain and turmoil you have experienced, you can never return to the carefree, untroubled YOU that existed before this. But you will find a way forward.

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!