Conference, School Starts, Bedroom

Alayna spent a good amount of time in the stroller and she was a trooper.

Alayna on one of the flights! Thank goodness for light up toys & her Ipod Shuffle with the Spongebob & ICarly theme songs on it!

Whitney wanted to see Alayna's toy! Alayna held on for a second, but nicely gave it up. She isn't too protective of her toys (yet)!

Alayna & Vera

Brady & his mom

Vera (if I remember correctly she is almost 2)

Evan (9 years old)

Aiden (almost 3)

Eric (8 months)

Taylor (I think 7 years old)

Zoe (3 years)

Merrick (around 2 years)

Joseph

Paige (around 5)

Tru

Bella (not 2 yet!)

Whitney (6 years)

Kaylee (2 years)

Sweet Alayna (3 years)

Callie

Sammie (3 years)

Kate

Abby

Eyes are sleepy.

Us with Rachel Coleman.

Rachel Coleman from Signing Time.

Alayna enjoying relaxing in the hotel room.

Oh the mountains were beautiful!!

This is Drake's latest contraption! It's a hinged cast that can be locked in place. Many have been asking about it, so I decided to sneak a photo in on the blog. He is doing well, getting more range of motion back, and we report back to Iowa City on August 10th. Hopefully it will come off! This summer has not been a good one for Drake at all.

4th Annual 1p36 Deletion Support & Awareness Conference - Salt Lake City, UT

Well, airplane rides are obviously not one of Alayna's favorite things to do. Thank goodness for her toys, blanket, and Ipod. They all helped (at times). However, there were moments of non-stop fussing/screaming/crying where all Dana and I wanted to do was crawl under our seats. Most people sitting around us were very nice and tolerated it well. Only a few glances and stares, but I think they were out of "feeling sorry for her" and not out of anger. It's tough. Alayna is non-verbal and can't communicate. I do think that her ears bothered her a few times, especially on the smaller planes from Chicago to Moline. We've concluded that flying with Alayna isn't easy and if we have to do it again we will try for a direct flight. The long layovers in Chicago were a killer.

When we arrived at the hotel we were greeted by Callie and a tribe of 1p36 families that were in the lobby! It was a nice welcome to see familiar faces as well as a few new ones! I apologize now for missing some of the kids photos. I know I didn't get a picture of Gavin, Molly, Ashlyn, Shay, 2 of the quadruplets, and maybe a few others. Sorry! While we were there we ate dinner out 3 nights in a row with different families. That was wonderful. We also had a girls night out with the mom's to Biaggi's. Again, another awesome time. The dad's did breakfast one morning too.

The conference started with a presentation from Rachel Coleman. She is the founder of Signing Time and they sell amazing DVD's to help families learn sign language. It has also been on PBS in the past. I plan to get the beginning DVD soon for our family. I enjoyed this and wish she would've stayed longer! I need a teacher to teach me signs. She explained how to remember the signs and makes connections with music. Dr. Shaffer, the leading researcher of 1p36, spoke as well, but I'll be honest when saying a majority of her presentation hasn't changed over the 4 years. I know research on chromosomes is difficult, but I just wish there was more to report. I did find it interesting though when she said Signature Genomics diagnosis 1-2 cases per month over the last year. The remainder of the speakers consisted of representatives from a Communication Devices company and The Listening Program and a panel of therapists.

There were many new faces this year, including two mothers of gentlemen that are 20 and 31 years of age. Neither had ever met another child with 1p36. They volunteered to do a question and answer session and I found that to be the most interesting. Neither of their children live at home anymore for various personal reasons that they shared with us. I think that this discussion brought to the forefront the possibility of everyone in that room with younger children to someday have to make that most difficult decision. I don't think any of us want to think about that at all, but the reality of it is it could be a decision we have to make later on.

I found it fascinating too how much of a range of abilities we have with our kids. Even though they all have the same deletion, each one is unique in their own development. Some are sitting, some are crawling, some are walking, some eat and some don't, and some can communicate and some can't. This is tough for many of us parents to see, it really is. Especially since so many of our kids are close in age. What makes them all so different? And at different levels of development? This is a question Dr. Shaffer continues to research. And because I am human, I wish Alayna's developments were right along side some of the kids. But I must be patient and continue to work with her. I do believe that Alayna lacks the motor planning to get to the next step and this is why everything just seems to take her forever to grasp. Right now, sitting is the biggest priority we have and she is doing much better with it.

Next year the conference is scheduled to be held in Minneapolis, MN. We will definitely be going and toting all of the kids along! It is a drivable distance for us which makes it tons easier with Alayna. For some reason, she enjoys the van better than the airplane!

School Starts Tomorrow!!

Well, Alayna's summer break is over today. She heads back to school tomorrow! She is going to need patience because it will take her time to readjust again. No more 2 hour naps in the afternoon. Her school, called SKIP (Special Kids in Preschool), has become an entity of HMELC (Horace Mann Early Learning Center). The location changed and it is now in Rock Island. So, a new school year, a new school location, and a new building require us to be patient with Alayna as change isn't easy for her. Ms. Renee is still her teacher though and I am so happy about that!

New Bedroom!!

Finally, Alayna got to sleep in her new bed last night for the first time! I will post pictures when it is all done. I still have some little touches to do and tonight the french doors are to be here. She didn't do to bad except was woke up by the storm at 4am. Hopefully tonight will go better, she has a long day ahead of her tomorrow!

Summer Update

I even got a grin!
Hi! I'm paying closer attention to what people around me are doing.
Alayna giggling back at me!
Sometimes she still sits in the swing and here she fell asleep like this....precious.

Summer School

Alayna qualified for ESY (Extended School Year) based on her IEP goals and end of the year evaluations. The staff felt that Alayna doesn't transition from breaks very well (I agree) and going to school an additional 4 weeks was probably best for her. She attended from 8:45-11:45 am up until July 2nd. Unfortunately, Alayna was fussy and crabby quite a few of the days. Like I said before, change for Alayna is not a good thing. Alayna had a different summer school teacher than her usual Ms. Renee and the program changed to a different location. So, a new school and a new teacher threw her for a loop! Thankfully though they have a nurse who would walk her up and down the hallways in her kidkart and that was the best way to calm her down and give her a break. Right now I think she is enjoying mommy time and being a home everyday. She has 2 weeks left of her little summer vacation and goes back on August 5th. It's going to be an adjustment all over again and take some time to get her back on the preschool schedule. She is loving her afternoon naps that range from 1-2 hours. She doesn't get that long of a nap time at school. A rest time is allowed though. I love being at home with her too, so we will try to enjoy our last few weeks together.

Developemental Pediatrician Update

Just yesterday, Alayna and I traveled to Peoria to visit Dr. Morgan, her developmental pediatrician. We hadn't seen him in quite some time due to scheduling conflicts, school, and then the bad snow storms in January. I'll be honest and say that I'm feeling a bit guilty. Alayna is having issues with her muscles in her feet and legs. They are extremely tight, therefore not allowing her to fit into her AFO's properly. She lacks full range of motion in her ankles, her flection is limited, and her feet seemed to be always pointed downward and inward. Her hamstrings are also very tight, limiting her leg to not full extension. Dr. Morgan recommends serial casting for her ankles. They will put her ankle in a good position, cast it, wait a couple of weeks, take it off, and then re-position it and cast it again. This process will be repeated until we see signs of progress and the muscle is stretched to an appropriate position. All I can say is, ugh. Alayna has seemed to get tighter as she has gotten older. We aren't sure why or what may have caused this. I've been told by a few other 1p36 parents that their child also has muscular issues/tightening. So, in the meantime we will continue to do stretches and wait until we hear from Dr. Morgan. The bad part is that we are unsure if anyone in the area does serial casting. Oh, and for her hamstrings we will be having Alayna wear a knee immobilizer on one leg at night, alternating legs so that hopefully it won't disrupt her sleep.

With each one of these developmental visits, my skin gets tougher. The first few were tough and by the time I would be in the van I'd be in tears. I was proud of myself for holding it together. At one point I felt my throat getting a huge knot in it, but I held it back. Regardless of development, Alayna is my daughter. I love her unconditionally no matter what. Of course I want her to walk and talk and do lots of things. But if some of them never happen it will be okay. It has to be.

Salt Lake City, UT - 1p36 DSA Conference

We are headed to the conference in a week! I'm excited to see familiar faces and meet lots of new people and kids. 1p36 DSA stands for Deletion Support & Awareness. We are now a non-profit organization working to educate and provide assistance and support to other families. We want to make this syndrome known to the world. This support group is my other family. They walk the walk right along with me. They understand my feelings because they too live them everyday. I don't want to think about what this journey would be like without them. The Hanson family from Utah is hosting this years conference and along with the help of many other group members it is going to be a great one. The agenda looks amazing and Dr. Shaffer from Signature Genomics will be speaking again. She is the doctor who has diagnosed all of the kids. I'm honestly looking forward to the Mom's night out to Biaggi's on Friday night! I'll post pictures when I get back and fill you all in with the information we obtain. Can't wait!!

My thoughts

Circumstances this summer have brought certain things to the forefront of my mind. I feel it necessary to post my thoughts on them. Dana and my children are my rocks. They validate my purpose and keep me going each and every day.

Special needs children make special families. What I'd like everyone to know is that we are not a "typical family." The atmosphere many days in our home is not of a "typical family." Sacrifice comes with raising Alayna, not only from Dana and I but from our other three children. That is the way our family has to roll now. Yes, sometimes making the sacrifice hurts our hearts and makes us resentful. But that feeling passes and we know they are made out of love for Alayna. The decisions we make in our family are not always easy, but they are made for the best interest of everyone involved. Most special needs children, like Alayna, are most comfortable in their own little world. In our case, she is most thrilled to be at home. Taking her out of the home can become a challenge. Alayna is all about familiar faces and familiar places. She could care less to ever step foot in Walmart, the mall, or a restaurant. And we accept that completely. For us, going into "Alayna's world" is peaceful. And it works. For Alayna to come into "our world" it gets down right ugly. For this reason, at this time I will never force Alayna to go somewhere or do something that I want to do and she doesn't. It truly isn't fair to her. Special needs go with special accommodations. And our special little girl deserves a special kind of love.

Three years ago, I wanted the doctors to hand me this perfect, healthy little baby girl. The kind every mother dreams about. The one I had dreamed to run along side of her big sister Alexis, the one I had dreamed would crawl all over this house and annoy her older brothers, the one I had dreamed would call me mommy by age 1, the one I dreamed would mess with her sibling toys, the one who would marry and walk down the aisle, and the list of dreams goes on and on like any other parent anticipating a baby. I didn't get exactly that and those dreams all died and new ones have been made in their place. That is the toughest challenge, to let those dreams go. And with all the doctor appointments and visits to the developmental pediatrician, each time it becomes more and more of a reality. However, not a day goes by that I don't wonder what Alayna would've been like with that extra piece of missing chromosome put back on. I still bobble between the anger and acceptance stages of the grieving cycle. I think this is completely normal and anticipate this may be the case for a long time.

Alayna brings on great challenges to me mentally, physically, and spiritually. She is a blessing that I may continue to look deeply at in order to find God once again. He lives through her and it is a challenge for me to see that every single day. I also realize that with Alayna comes the duty of taking care of her for the rest of her life. As a mother, I will do that proudly for her (and my other three children). In my book, parenting doesn't end with an age....it never ends. We realized this early on in Alayna's life and we accept the challenge. We don't want anyone's pity. It is a privilege to be "chosen" parents of Alayna and we will keep our heads held high even when the storm gets rough. It is a rewarding experience and I have to continually remind myself of that. The positives do outweigh the negatives. The good days outnumber the bad days. I'm not going to lie and cover up. Somedays, it just sucks. It sucks for her, for us, for her siblings, and for my entire family. I'm allowed to say that. But again, Alayna is MY DAUGHTER. HER AND I HAVE A UNIQUE BOND AND I WILL LOVE HER FOREVER UNCONDITIONALLY.

Alayna at S.K.I.P & All Other Adventures She Takes Us On!

Happy girl playing with a toy.

Getting pretty for my sister and two brother's birthday party!

At Easter dinner. You ask "Why do you have your hands in your mouth Miss Alayna?" She says, "because I'm still working on the top 2 year molars."

Alayna is going to begin Motion Therapy at New Kingdom Trailriders in May. Our goal is to help her increase her trunk strength and hopefully find an activity that she will grow to love. This was her night for orientation. It didn't go as well as planned due to not napping after a long day at school. Hopefully the next session will go better.

Taking a nap at Easter dinner. Oh they are so sweet when they are asleep! All babies are!!

Big brother Drake wanted his picture with Alayna. Happy 10th Birthday Drake! And yes, it is April and we are wearing Christmas pj's. Oh well, whatever is clean and fits works for me!

Posing with big sister Alexis. Happy 12th Birthday Alexis!

Alayna getting a bit silly with Lexi! I think she is getting tired and she tends to get giggly. Okay, or she cries alot. It's one or the other usually!

Yum, maybe this steering wheel will fit in my mouth?!

Dressed and ready for school. Waiting to eat my daily bowl of oatmeal!

This was one of the last few days she was allowed to have a pacifier.

Let's go mom, I'm hungry!
Sweet little face. And you can see that she even eats the paper off of her hard books and toys. See the page? It's missing part of the sticker. She sucks or chews on just about anything.
More hand in the mouth.

S.K.I.P Update

Alayna has been attending SKIP Preschool since February 1st. She gets on the school bus with her aide at the high school where I work at 7:45am and gets dropped back off at 2:25pm. One of the goals on her IEP is to get Alayna to respond positively to 70% of the school day. That has been the biggest challenge for her. She typically has a great morning and then a not so good afternoon or vice versa. To help meet this goal, Alayna has qualified for ESY (Extended School Year) and will be attending from June 7th through early July every day from 8:30-11:30 am. She gets her PT, Speech, OT, and adaptive PE right at school.

Overall, I am extremely pleased with how she has adapted. The bus ride is becoming the enjoyment of the day. She loves the lift and smiles every time she gets raised up on it. In addition, she is so comfortable now with her KidKart that we use it when we go to other events like ball games. She eats lunch right in the classroom with her other 6 classmates. Which by the way are all non-verbal and have KidKarts or other kinds of "transportation." They are so cute! The class has a Magic Bullet and the school caters a "soft" lunch for all of the kids. Some of the things I probably wouldn't consider "soft" so mashed potatoes are made every day and on hand just in case. But the teachers will put nearly everything that is served in the Bullet. Alayna has eated a hot dog, pepperoni pizza, chicken nuggets, and noodles. I'm not sure it would look too appetizing to us, but hey if she likes the taste that is wonderful! The teachers comment on how well she likes "flavorful" food. I love the daily communication of writing notes back and forth in her notebook that is kept in her bag.

Brace Issue

About 3 weeks ago after her AFO brace was taken off of her right foot, a huge blister, swollen looking thing appeared on the inside of her ankle. She was sensitive to the touch. I thought for a second that her ankle looked broken, but it wasn't. It looked like someone had injected fluid right under the skin. I took her to her orthosist and also had her PT look at it the next day. To make a long story short, she had developed what is called a bursa. It is a fluid-filled sack caused by friction on her brace. Her orthosist made some adjustments to the brace, put a little padding in it, and advised us to leave the brace off a couple more days. So, a week later I thought I'd give the brace another try. Well, the bursa immediately formed in just one day of wearing it to school. So, back to the orthosist we went and we decided to make an appointment with her ankle/foot doctor at the ORA. Dr. Peyvich saw Alayna yesterday and said she had no deformities and that he thinks she needs a different type of brace. I was so thankful because I thought that her tibia might have been out of place and that she would need to be serial casted. Our next step is to return to the orthosist and get casted for a new brace for at least the right foot. I'd prefer to do both, so we'll see what he says. This will be set #3 for AFO's! UGH.

Bye, Bye Paci

Alayna had to finally give up the much loved and adored pacifier. She seriously began "eating" them. Due to teething, she would take it and bite on the nipple and not really use it for sucking purposes at all. She would bite through the nipple so bad that I could honestly just about pull off the end of it in one huge piece. Choking hazard! I was going through 2 pacifiers a week and was completely sick of that expense! Plus I was afraid she'd swallow it. Her SKIP Preschool gave her a textured triangle to replace the pacifier. I attached it onto one of her pacifier holders and we've been working on holding it and using it instead of putting her hands in her mouth. Her hands and fingers are getting better and healing, but about 2 weeks ago she had them so calloused and cracked.

Behavior Issues

Alayna gives us daily challenges in the behavior category. Honestly, her Disney World is here at her house. If we attempt to take her for example to a ball game or a restaurant we are more than likely going to pay a very high price. She may last for a short time, but can turn on a dime. And when she throws one of her fits, watch out! She screams, cries, holds her eyes shut tight, bites at her hands, and basically goes crazy. These fits can last up to 20-25 minutes usually and then about 80% of the time she'll snap out of it and act like nothing happened at all. Can we say DUAL PERSONALITY! I had the lovely opportunity to witness one last night right in the middle of the doctors office. I had to put myself in the zone that I was the only one in the office, ignore her, for a minute tried to pretend she wasn't really mine, and go about filling out the paperwork I had to do. And then about 15 minutes later she was fine. It happens most often when she is tired and she has not discovered a good way to soothe herself into a nice little nap. It's frustrating as heck! Most of the time I resort to keeping her home due to the fact that I'm wore out and not in the mood for one of these occurences to happen. So, does anyone else in my 1p36 family feel prisoner to their own 4 walls of their house?

New Bedroom

It has been decided that Alayna needs her own bedroom. My intention was to have her and Alexis share a room. However, as parents of special needs children know, that is probably not the most ideal situation due to sleep distruptions, crying, getting sick, etc. So, our dining room is in the process of becoming Alayna's new bedroom. We had it painted just yesterday and now we are on to getting french doors made for privacy. Then we'll get some furniture in there, a bed of some kind, and new bedding and curtains to finish the look. I'd like it to be completed in less than 4 weeks before summer break starts! Oh, and the chandelier needs to be changed to a ceiling fan. That may look a bit funny in a bedroom. The only bad thing is that she won't have a closet, but we can use drawers and borrow space in Lexi's closet if needed. We are all excited to get her a space of her own. Especially for those most trying, stressful times when she just needs to be left alone!

PT, OT, Speech Accomplishments

I wish I had more to say in these areas. Alayna still has no will to want to get on all fours, crawl, use her arms to move, etc. Weight-bearing is still a major task. I can't wait for the day that she begins to move around the house. She is too content on being in one spot! But, people who haven't seen her for awhile say how much of an improvement they see with her. I think she has definitely come along in how she focuses on things and how attentive she can be. She pays more attention to the detail in things and watches us more often. I think that is what they are referring to. She has started to "rock" herself on the floor and try to sit up that way. Silly girl, use your arms to help you get up! As far as the eating goes, we have no problem in that area at all and she loves her sippy cup of milk.

Neurology Update

Alayna went to Iowa City for a check-up. She has been seizure free for over 1 year now! And because she is on the lowest dosage possible of phenobarbital for her size, the doctor recommended to keep her on it for 1 more year. If at that time, she has been seizure free still, she will begin to wean her off of the medication. I keep my fingers crossed. The only upcoming doctor appointment that I can remember off hand is in Peoria with her developmental pediatrician, Dr. Morgan and it is in July.

Salt Lake City, Utah - July 29th-Aug 1st

Dana and I will be taking Alayna to SLC, Utah for the annual 1p36 Deletion Support & Awareness Conference. We are truly looking forward to seeing familiar faces and meeting the new ones that are from out West. We've never been to the mountains out there either, so we are excited to see Utah. It will be a quick trip, but one that is near and dear to our hearts. We will make every attempt possible to make it to this wonderful, annual meeting every single year. Those people are part of our family and the connection that we have with each other is unexplainable. We support each other in many facets and talk nearly daily on Facebook.

Blogging

I apologize for the lack of blogging lately. Our lives are very busy, filled with many activities every single night. And now that ball season is in full swing, we are even more overwhelmed with running. In addition, I thank you all for the support you have shown and expressed for Drake during his battle with MRSA. The MRSA seems to be gone, however, he is not fully recovered physically, but is continuing with PT. In about 5 weeks, the doctors will make the decision whether to go forward with another surgery or keep with PT. I'll keep you posted.

Taking care of a family and becoming a parent is the most rewarding experience ever, yet the most exhausting too. And having a child with special needs requires full-time care, attentiveness, patience, and endless love. It isn't easy sometimes and I am glad for my supportive 1p36 family because they live the life that I do every single day. I'm not alone. That thought provides me with enough "peace" to take on the next day.

First BIG Day of Preschool!

Dressed all pretty for her first day of preschool!

Good morning Alayna!

So cute!
"Mom, I'm not sure about this."

All bundled up, snug and tight and unable to move much :( waiting for the school bus.


Alayna getting a bit fussy waiting.

Alayna & Me - And no tears from mom....I had to go teach right after this and that would've been bad! :) Had a few butterflies though.

Chris, Alayna's driver, loading her up on the ramp. At this point, she was more intrigued on what was going on.

Going up and up some more.

Almost there now! Unlocking the brakes so we can back her up.
She's finally in the bus and Chris is doing her tie-downs.
And there is the bus driving away.....:( .....have a good day little Alayna.
Alayna got a new pair of shoes today! I ordered her some Hatchbacks which are awesome to get on with her AFO's. They fit so well I think I'm going to order a black patent leather pair for dressy days. So cute and worth the money!

Today I was actually running ahead of schedule! I didn't want Alayna to be late for her very first bus trip to preschool, so I made sure we were up gettting dressed and fed before 7 am. When we arrived to my classroom I strapped her up in her KidKart, wheeled her down the hall to the door, and patiently waited for the bus. Alayna was a trooper, but as you can see from a few of the photos she was getting restless and irritated. I think just being strapped in the KidKart is a big adjustment for her let alone all of the other parts that goes along with this adventure. I haven't had the chance to talk with her bus aide, but I'm eager to hear how the ride wen

At lunch time I broke down and called the preschool to check on her. I just need affirmation that she was doing okay. It's hard to imagine that she was out in the world without anyone that she really knew. The secretary was so nice and she got Ms. Renee, Alayna's teacher, on the phone. Alayna was doing pretty good, but of course had her fussy times around her normal nap schedule. Eating lunch was a bit of a challenge too, but she ate 4 bites of pepperoni pizza that they put in the Magic Bullet! Don't tell Alayna, but that just sounds so nasty. She also ate a bowl full of apricots which I've honestly never given to her before. In fact, I don't think I've ever ate apricots! It's going to take some adjustment time for Alayna that is for sure. I just pray it only gets better with each day. I want this to work so badly for her.

Alayna arrived back at my school at 2:30 pm. The issue right now is that I'm not done teaching until 3:10 pm. Patti, Alayna's babysitter, works in the library and will get Alayna as long as she is in the building. However, Alayna got back today and had a major meltdown. It's hard to take care of her in the library. She just wanted out of the KidKart so bad. Patti took her back to her house and she was fine. She ate a snack and was probably relieved to be in familiar surroundings. I appreciate that so much. I'm kind of playing the next few days by ear and see how things go. I'm not sure if I'll have to resort to getting a different drop off spot other than at my school.

What I really like is that we have a notebook in Alayna's book bag that we can correspond back and forth with. That makes it nice since I'm not able to drop her off or pick her up. I can also let Ms. Renee know how Alayna's morning has went. Tomorrow is a new day, so wish her luck again! This new routine is a big step for the both of us.

"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with 1p36 Deletion Syndrome doesn't TAKE a special family, it MAKES a special family." I liked this when I read it and I borrowed it from another 1p36 mom. Well said Kelly.