1p36 Conference in MN & Doctor Appt Updates

Our sweet little Alayna...curls & a smile!

Jacoby and Jakub at the 1p36 Conference.

Lily literally runs around everywhere & we love her glasses!

Maya is getting so big! She is one beautiful little girl.

This is Beth and she is 45 years old. She was just recently diagnosed with 1p36 Deletion. She had been misdiagnosed with Prader Wille Syndrome for all that time. She is one lovely lady.

This is where we stayed at Bethel University...yep, in the dorms!

Dana and Alayna!

This was our sleeping arrangements!

Alayna got the pack-n-play!

Alayna getting ready for day #1 of the conference.

This is on the way to the conference in the car.
Getting sleepy!
Oh thank God, she finally gave up! I don't have any photos of her screaming her head off....I thought I'd spare everyone...LOL. Alayna DOES NOT sleep well in the car.
This is all of Alayna's stuff for the 2 day trip to MN! Yep, everything is packed but the kitchen sink.

5th Annual 1p36 Deletion Conference - St. Paul, MN - Bethel University

As most of you can probably relate, packing for an infant is a lot of work! Especially when you are taking a trip. Alayna isn't an "infant", however, she requires all of the same stuff an infant does. The photo above is just HER stuff. There is so much to think about like what we will feed her (she doesn't eat McDonald's yet...DARN), diapers, wipes, where will we give her a bath, do we have a highchair, where will she sleep, do we have her medicine and tylenol, and do we have the KidKart? It took me longer to pack for her than it did myself! But it was very well worth it!!

We arrived in St. Paul around 10:30pm Thursday, July 14th. We stayed in a dorm on campus. This was so nice because it was so cheap and it provided us a "retreat" type feeling with the other families. All of the 1p36 families had 1 whole dorm to themselves. The dorm rooms were not anything like I lived in when I was at Illinois State! This dorm room was meant to sleep 6 students and it had 3 bedrooms, a living room, a toilet room, 2 sink room, 2 shower stalls, and a kitchen area. It was like an apartment and if I were a student at Bethel I'd love it! The only thing it lacked was a TV....forgot about that! But thank goodness we brought the laptop.

The speakers did an amazing job and thanks to Beth for making the conference wonderful! It is a big job and individual families just volunteer to take it on and organize it. There was a moment when all of the attendees stood up and introduced themselves and their child. I counted that 26 children were represented by the families. 18 out of the 26 families had children that were 8 years of age or younger. I found that interesting! I enjoyed meeting the new families and seeing the ones we have met over the past 5 years. Dana and I are so thankful to have been able to attend 4 out of the 5 conferences. I have to give thanks to the ARC of Illinois as they have provided stipend money to our family each year to help us with expenses. Without the help from ARC I don't think we would've made it to as many of the conferences as we have.

Next year the conference is moving south to Gatlinburg, TN! We plan to attend and enjoy those Smoky Mountains. Fortunately, my family has roots from Knoxville, TN so we are hoping to get a family reunion going at the same time.

Neurology Update - Iowa City

Two weeks ago, Alayna visited her neurologist in Iowa City. The wonderful news is that Alayna hasn't had a visible seizure since August of 2008. So, by the doctors recommendation we have been in the process of weaning her off the phenobarbital (medicine to help with seizures). Last night was her last dose!! Please say a prayer and keep your fingers crossed that Alayna doesn't re-develop seizures. It is always a risk to children with this syndrome, so we just don't know. If things should develop, we'll just call the doctor and she will prescribe something else besides phenobarb. But I am truly hoping that this doesn't happen and that Alayna will be seizure free!!

At that neurology visit, her doctor made a referral for us to see the Center for Disabilities and Development at the University of Iowa Hospitals. I was thrilled! So, on November 30th we see the following disciplines: Social work (30 min), Physical Therapy (60 min), Occupational Therapy (60 min), Audiology (60 min), Psychology (120 min), Medical Staff (60 min), and speech/language (60 min). Oh my gosh is all I have to say!! I may need some medication myself for that visit! That is going to be one very long day, but it will be so nice to have the doctors working with Alayna housed under one roof. My main concern at this time for Alayna is her behavior and PT/OT development. I'll keep you posted.

Developmental Pediatrician - Peoria, IL

This past Monday, we traveled to Peoria to see Alayna's developemental pediatrician who has seen her since she was diagnosed at 11 weeks of age. Overall, he was pleased with how things were going. Unfortunately, I can't say that a whole lot has dramatically changed in the year that we last saw him. Alayna is making strides in gaining strength, sitting, and bearing weight. At this appointment I told him that my main concern at this time is Alayna's behavior. She is very unconsolable, will cry for long periods of time, doesn't adapt well to change, doesn't like being in crowds or unfamiliar places, etc. So, Alayna is now trying out a medication called Diazapam which is generic for Valium. It is used to treat anxiety and it isn't at all uncommon that children with special needs use medication to help improve their behavior. She got her first dose last night. We are starting with 1/2 of the prescribed dose first and seeing if we notice a change. If we don't then we will increase it to the full dosage amount prescribed. We return to Peoria in 3 months. I'll keep you posted on this too!

Pediatrician - Dr. Neptune

Yesterday we went to visit Dr. Neptune who is our local pediatrician. Alayna is now weighing 27 pounds and is 37 inches long. He couldn't believe how strong she was! And for those of you who don't know Alayna, she is strong! The reason why she isn't yet walking or crawling has very little to do with strength and muscle developement, it is all in the brain! Her wires aren't making the connection yet on how to do these things. I have the faith though that someday she will walk! It just takes Alayna awhile to learn things and repetition is the key. Alayna also received 3 of her "kindergarten" shots so we wouldn't have 6 next year. She cried so much while he was checking her out that she fell asleep on the table and she slept through every single shot!! I was so happy. Oh and so was Lexi and Douglas!

Potpourri

Since the conference, I decided to get Alayna's Baby Signing Time DVD's back out again. I had bought 2 of them awhile back but she never paid attention to them. Now, she is in LOVE with the one I keep playing over and over. It's all about repetition and I hope that she picks up on some signs someday. It's definitely helping all of us learn the signs too. Even Douglas is using them to talk to her!

Alayna starts school next Thursday! Her summer is nearly over. She attends school on the "year round" calendar. I think she is looking forward to it, even though she can't tell me. It just seems like she is getting bored here at home and when I ask her if she wants to go "bye bye" she lights up with excitement. So, I'm sure that first bus ride will be fun for her!

Since Alayna is bearing weight so much better I plan to ask her PT at school about getting a gait trainer/walker. I think it would be wonderful to have another option for her at home.

Let's Catch Everyone Up!

She loves the birthday cake toy!

Getting ready to eat!

Wipeout! She still doesn't mind it if she falls backwards....still very unaware.

Practicing our sitting! Doing better.

June

In early June we were all done with school, including Alayna! She didn't qualify for summer school this year. The teachers do an assessment after each two week break that they have and Alayna didn't regress or take long to get right back on track. And to be honest I wasn't planning on sending her because it is only for 3 hours and it takes her 45 minutes to get there on the bus, it isn't her teacher that she is used to, and sometimes the therapists are not the ones she works with as well. Alayna doesn't respond to change easily and last year we did try summer school and it was torture for her. She didn't enjoy it at all!

So, instead I've been working with her at home on her sitting and standing. The Trinity HomeCare Products guy came out right when school ended and adjusted her stander so that she fit properly in it. Alayna seemed to have a big growth spurt and I wasn't able to squeeze her into the stander anymore. We do lots of play time and we are just trying to do our best to enjoy this summer and relax as much as we can.

July

This has been a great month for swimming so far! However, Alayna isn't liking the swimming pool very much (YET)! I had bought a special needs life jacket for her and I ended up sending it back because she threw a huge fit in it. I think it really restricted her movement and she hated that. I tried to put her into an infant type float the other day and it didn't go so well either. But we are not giving up! Alayna loves things that are familiar. I just think we are going to have to take baby steps to get her "warmed up" to the new pool. Lately I've just been putting her outside near the pool hoping she'll see it enough to recognize it and the surroundings. I'll let you know how this goes.

1p36 Annual Conference

Dana, Alayna and myself are headed to St. Paul, MN this week for the annual conference. It is being held on the campus of Bethel University. Approximately 30 families will be attending and many more wishing that they could attend. We are looking forward to reuniting with familiar faces and getting to know lots of new ones. It truly is a few days that help us to feel "normal" just like everyone else. We hope to gain some new knowledge on any topic that we can that will help us plan for Alayna's future. I'll be sure to post some pictures and re-cap the conference when we return.

Doctor Visits

This month we have 2 annual check-ups to go to. One is this week at University of Iowa Children's Hospital. Alayna will see Dr. Mathews, her neurologist. Currently Alayna takes a very minimum dose of phenobarbital for seizures. Alayna hasn't noticeably had a seizure since August of 2008. So, it will be interesting to see if the doctor wants to continue with the minimal dose or try to wean her off of it. At the end of the month we will travel to see Dr. Morgan, her developmental pediatrician, in Peoria. We'll see if he makes any new recommendations for Alayna. I'll keep you posted!

The Blog

I apologize for not keeping up with Alayna's blog. I hope to do better starting today! I'll be honest, Facebook gets a lot of my time and I know that isn't informative for everyone. Our support group is on Facebook and that is amazing because it is so fast and quick to talk to everyone.

New things with Alayna

Alayna has been sleeping awesome lately! She will usually sleep 10-11 hours a night. She doesn't nap too much during the day, but I can't be picky if she is going to sleep like she has been. She is doing better eating more things with texture. I can now feed her mac n' cheese and not have to cut it up. She ate 1/2 a grilled cheese the other day, but I did break it into pieces and put it in her mouth. Alayna loves to drink water! She will stand with assistance while holding her hands. If we support her at the waist she will collapse her legs knowing you are supporting her that much. We have to MAKE her stand as she still doesn't want to do it on her own. Alayna continues to love her musical toys and she loves her Ipod shuffle with her few favorite songs.

The entry following this is one that I had written a few months back but never published. So, you can see more of Alayna if you read on!

The Daily Achievements & Challenges of Raising Alayna

Alayna sitting in her high chair with braids.

Having fun swinging...not sure what we'll do when she completely grows out of its seat.

"What are you doing with the camera?"

I was cleaning up dinner, turned around, and she had fallen asleep in her high chair.

Playing with one of her favorite muscial toys.

Reaching for one of her presents. She wasn't into unwrapping them. Hopefully someday. Happy 4th birthday Alayna. Checking out a new toy. New toys have to be introduced probably 50 times before she'll even give them a chance. She is very set on her favorites and familiar toys. Alayna with her sister, 2 brothers, and cousins.

As we celebrated Alayna's 4th birthday in January, we thanked God for her health and the continued progess that she is making, even if it is slow. Daily life with Alayna is a wild ride on an unknown course. We celebrate when we can, cry when we need to, and keep chugging away at this journey God has us on.

Life with Alayna is challenging every single day. That is a fact. No, it isn't over exaggerated or overstated. The weekly schedule of getting up early enough to get myself ready for work and then to get Alayna ready for school is sometimes a bit exhausting and overwhelming. Honestly there are days that I just don't want to do it anymore. If I had an option I think I would want to quit and throw in the towel. But there is no option and we just keep going as best as we can. I'm sure that is a normal thought for many of us parents of special needs kids. Alayna is dependent upon us to meet every one of her needs from getting changed, dressed, braces and shoes on, bathed, fed, and hair combed each and every day. It is very much like having a baby.

In addition, since Alayna is nonverbal and unable to express herself, crying is the only way she can try to tell us something. Trying to figure out why she is crying is another hurdle that is as huge as Mt. Everest. Sometimes I just can't figure it out and it is frustrating to listen to it continue. Fits of crying can last anywhere from a few minutes to an hour or occasionally longer. It is a very helpless feeling to have and I hate it with every fiber of my being. A crying spell can have the most negative affect on every person in this house. I admit first hand, it makes me crabby and I just want to scream at the top of my lungs. This is often a daily occurence here at our house. Alayna is a definite crier and I wish she wasn't, but she is. I know I've said this in past posts, but I do hope that someday she outgrows it and learns how to tell us what she feels or needs in a more constructive manner. Signing would be amazing!

Alayna is not able to sit for long periods of time unassisted. So, she does alot of playing using the high chair, bumbo seat, swing, laying on the floor, or sitting on the floor (with help). She has to be "switched" just like a baby does. Remember having a little baby that got bored with the task and you had to do something different? That is what we are constantly challenged with for Alayna. I can only think of so many different things to do with her that entertain her and keep her busy. Unfortunately, there are things that need to get done around the house or with the other kids and I can't sit with Alayna all day long. I really hope that Alayna will be ready for a walker soon. This would give us another option. How Alayna would tolerate a walker is unknown. She doesn't enjoy therapy too much at all. This is frustrating because I would only love to see her make quicker progress on things.

We Welcome the New Year!!

Christmas day photo 2010! Yes, they were all looking at the same time!

The 1st cousins! This is our 4 kids along with my twin sister's two kids.

Dad and Alayna hanging out. Again, hand in mouth! UGH! We do our best to prevent this as much as possible, but it is just a natural thing for her to do right now.

"Hi Alayna!" Playing with her toys before going to the Christmas celebrations.

Still playing.....but of course with an "old" toy. New toys have to be introduced slowly to Alayna. She usually pushes them off and wants nothing to do with them at first. But if we show them to her often, she eventually ends up liking most of them. It just takes time.

Taking a nap before heading out! She is in her turtle neck and tights...no dress yet....she looks kind of silly :)

Douglas wanted his picture taken with Alayna.

Douglas and his loot!

Lexi and her presents...she'll probably be upset that I posted this photo...almost a teenager and has attitude (at times) to go along with it!

Drake willing to smile and take a picture!

Annual visit to see Santa...Alayna wants NOTHING to do with him, so we did this while she was at school. Maybe we will try next year.
See, this is how much she wants to do with Santa! Santa visited her grandparents house and while all the other kids were talking to him and taking pictures, Alayna was content laying on the floor by herself...she wanted LEFT ALONE!
Cousins posing for a picture....minus two of the little ones....Chloe and Alayna. Maybe next year!
"Mom, really? Do I have to sit on his lap AGAIN? Please take me back."
Here is proof that Alayna doesn't like crowds or to pose for pictures! She is furious in the front row with her hands over her face and she was crying. This I believe upset Ava who is next to her and Chloe, who is behind Ava. We are making memories!!

This past year provided us with many blessings and memories. We started off the year with a challenge when Drake developed MRSA in his knee joint and had 2 emergency surgeries on February 26th and 27th. We continue to go to physical therapy at least twice weekly to recover from this terrible incident. It's been a challenge for him, but he is one of the toughest little guys I know. I pray that 2011 is a better year for him and that he gets to play all of the sports he wants to play and that we can hopefully make it to a beach somewhere! Last year our trip to Florida had to be cancelled due to him being in a cast in July. He is making great progress, even though it is slow, and he will get there!

The summer months were FULL of softball and baseball. This keeps the DeKeyrel's extremely busy nearly everyday of the week, including weekends because that is when Lexi plays her ASA tournaments. I enjoy watching my kids play and they love it. That is what is most important. I'm sure 2011 will bring us another exciting season of ball! They prepare for it year round, so it better be good! Ha ha.

August brought us back to school. Alexis started junior high and Douglas started 1st grade. So, Lexi had to adjust to a new kind of schedule, as well as Douglas....no naps and snacks...WHAT?! Drake had to be the big brother that looked out for Douglas and made sure they were on the bus together. It made him "step up" because Lexi usually took care of both of them!

This past fall was packed full of volleyball games, cheerleading, basketball games, Halloween, and tons of other activities. And this holiday season has been a usual busy one like everyone else can relate to.

Tomorrow night is New Year's Eve! We look forward to spending the evening home with one other family and ringing in the new year! I am especially excited in what 2011 may bring our way. Alayna will be 4 at the end of January and I have continual prayers and wishes for her. God knows what they are and I hope the answers will be forthcoming very soon. :) Patience and preserverence.

So, HaPpY NeW YeAR 2011 to each of you and your families! Blessings to all of you.

Holiday Time!

Alayna sitting in front of the tree. I still don't think she'll get into unwrapping presents yet.

Hum...finger in mouth still. She very much needs that oral input whether it be from her finger, a blanket, a rubber toy, etc.

She fell backwards! Still not able to sit for a long period of time without assistance, but it is getting much better.

Getting ready to go to a family gathering at Grandma & Grandpa's house with lots of cousins!

All smiles! She just doesn't like to make eye contact with the camera.

She fell backwards again and sometimes I wonder if she does it on purpose. She giggles and thinks it is funny! Maybe it provides some kind of fast sensory input of something!?

This is Alayna in her kidkart at her preschool Holiday program. Every student in her class is in a kidkart of some kind and they are non-verbal. Each one had their own aid helping them with the program.

This is Alayna and her classroom teacher, Ms. Renee. We love her! She is so patient and kind.

Santa was there to visit with the children! However, as you can see Miss Alayna wanted NOTHING to do with him or at least while on his knee.

So, we tried it in a different way! She was more content with Santa while she sat in her kidkart. I'm glad I at least got 1 photo of her and Santa without her screaming!

They decorated each of the children's karts. The song they paraded to was called "Hippopotumus for Christmas." So, that is what the purple thing is peeking out of the gift box on her cart! It was so cute. I wondered how they did a program for kids that were non-verbal. They pushed each child up and down the aisles in the gym while the song played. The kids loved it! Most of them are very musical and enjoy those kinds of things. The movement in the karts helped keep most of them content too.

Here is Alayna and a few of her classmates. As you can see, they provided her with her blanket for comfort and her favorite toy book.

Wow, it's been a LONG time since I've updated her blog. I think part of the reason is being extremely busy with activities of all kinds, in addition to Facebook. It seems as though that has opened doors for communcation with friends, family, and our 1p36 family.

First, happy holidays to you and your family. We have been blessed this year in many ways. Alayna is healthy and never once had any major illness of any kind. Minus a few runny noses she has had a clean bill of health for the year. We hope that 2011 brings us these continued blessings. Alayna has met her goals set at her school one year ago. We have set new ones for her to achieve, focusing on sitting, transitioning into sitting, chewing munchable foods, and manipulating switches and buttons. She has been adjusting to school well, but to be honest it is a very long day for her. She gets on the bus at 7:45am and gets dropped off at 2:30pm. Hopefully over time, Alayna will do better with managing her "tiredness" and not getting cranky as much as she still does. Alayna exhibits many "baby" behaviors as I like to call them. And naptime is stil a necessity and sometimes it is still 3 times a day!

Sorry for such a short post, but not too much has changed! We just keep chugging along and go about our usual days one at a time! Season's greetings to all of you and may God bless you all in 2011.