Grinding Teeth & Early Bedtime

Swinging and eating! This is heaven to Alayna.

Alayna enjoying a relaxing moment in the warm sun.

Alayna fell asleep right at trick-or-treat time and her other three siblings were anxious to say the least. They were not patient enough to wait until her nap was over. So, Alayna stayed home with daddy and instead I dressed her up the next morning for a picture! I figured she wouldn't care if she missed out this year. Now, next year may be a different story!

Alayna lounging! Look at that face. I try to let her practice sitting up by herself without having me behind her. I rolled a blanket up and as you can see she fell back on to it. She's getting tons better though and is grabbing at toys and playing with them while trying to sit.

Alayna fell over! This is her on her side laughing about it.

Alayna is doing so much better reaching and holding her bottle. It's actually nice to know that if we are rushing to get ready, we have the choice of giving her the bottle and using a blanket to help prop it up in case she lets go. It's wonderful. If you think about it we are almost to 2 years of feeding her a bottle. It's getting a little old...ha, ha.

Alayna playing with two of her favorite toys at the high chair. Christmas is coming up and that is good because Alayna wishes for new musical, light-up toys! She is actually showing signs of boredom with a few of her toys. She just isn't as interested in them anymore.

Make an on-line slide show at www.OneTrueMedia.com

Grinding Her Teeth

Alayna has started to grind her teeth. She does this at times throughout the day just to do it I guess. We are doing the best we can to tell her no and to get her to stop it. I'm going to have to do some searching on our yahoo support group website to see if this is an issue other parents have had to deal with. I just don't want it to get out of hand and ruin her teeth.

Holding Her Own Bottle

Dana and I still resort to helping Alayna drink her bottles, but as you can see in a few of the photos she does a pretty good job by herself. Occasionally, she lets go of the bottle and it falls. So, we use a blanket to help prop it up. It is nice to know that she is able to hold it on her own for the most part. I'm not sure how much actually remains in her mouth because she likes to spit it out and let it run out the sides of her mouth. Crazy girl! Most children are done drinking bottles around 1 year of age. Alayna is almost 2 years old (January 29th) and I'm ready to give up the bottles. She isn't though and we must be patient. This is her primary source of nutrition still and until her eating habits get better, we have to keep the bottles.

Early Bedtime

Lately, Alayna has changed her bedtime routine by eating dinner around 5:30-6:00 pm, taking a small bottle around 7:15 pm and then falls fast asleep by 7:45 pm! This is crazy too. She goes to bed so early. I was trying to get her to take her last bottle around 7:30-7:45 pm, but by that time she was so tired she wanted nothing to do with it and would refuse to take any of it. She'd throw a big fit. That poses a problem because we like to put her phenobarb in her bottle and therefore she wouldn't get the medication. I'm not really sure if we should put the phenobarb in her bottle, but nobody has ever told me not to and it tastes yucky. Anyway I can get it down her is what I do. Thankfully, she is sleeping better through the night. It's a hit and miss thing. Last night she slept for a solid 10 hours. It was wonderful. However, the night before I was up out of bed at least 7 times replacing the pacifier from 3:30-4:45 am. UGH. I've got the walk to her crib down pat though and I don't remember doing it half the time. I fall asleep pretty fast once I return to my bed and hit the pillow!

Sitting

We continue working on sitting. Here in this video, Alexis is helping her a little. Most of the time we don't have to touch Alayna much, but just be there behind her in case she falls. As you can see though she is doing a much better job of "righting" herself and trying to keep her balance. She even extends her torso and sits up straight in this little clip without being forced to. She is also playing with the toys we put around her. I think by the time she turns 2 she is going to be sitting completely by herself. That's our goal!

Early Intervention Meeting

Our IFSP meeting is next week to review Alayna's goals and to write down any new goals and/or concerns that we have. All of her therapists do an evaluation of Alayna. I will inform you later of how it went.

Thanks again for reading about Alayna and keeping up with her progress. Progress is slow, but it is being made! She continues to teach us patience and to be thankful for the things we so easily do in life like sit, eat, and talk. All of those things are such hard work for Alayna and she is a trooper. We continue to be so proud of her.

A Glimpse of the Past Few Years

Photo and video editing at www.OneTrueMedia.com

I decided to put a slideshow together of quite a few pictures over the past (almost) 2 years. It's quite amazing to see how Alayna has grown and changed. We continue to celebrate each milestone and love her to pieces. Because this took me some time to figure out, I'm out of time to type. My "motherly duties" await and children are literally pulling on my legs. I will post again soon. For now, enjoy the pictures! And again, thank you so much for your support.

Another Update, Pic's To Share, & Prayer Requests

Alayna battles a skin condition on her legs called keratosis pilaris. To learn more about it visit http://en.wikipedia.org/wiki/Keratosis_pilaris . It just so happens that a few other family members share that same condition. There is no "cure" for it, but things that can help reduce the visual appearance. And since the weather has turned cooler, we are now battling the rosy, red cheeks. They don't seem to appear dry, just pink a lot!

Yesterday, I fed Alayna and even let her use the spoon a few times (okay I had to help her so she wouldn't shove it down her throat). She got a kick out of it and laughed a few times. I think it makes her feel more "independent" and a big girl. I believe Alayna realizes when she does something new by herself and she feels good about it. As you can see in her left hand is a Cheetos Puff! She did pretty well with about 3 of them and when they got too small I took them away.

As you can see by the look on her face, she still "gags" every now and then but only on real food. Here she is still eating a Cheetos. Baby food is a breeze for her, but anything with a texture or something she has to actually chew sometimes causes problems. She is just learning what to do with it in her mouth, move it side to side, and swallow it. A few days ago she tried little marshmallows that were in an apple salad and she loved them. They worked well because they were already soft and easy to maneuver and chew. And as you can see, she gets terribly messy when she eats by herself. On bath nights I'm okay with that, on other nights I do the feeding! She rubs it everywhere including in her hair. Yuck!

Here she is at Grandma & Grandpa Bush's wiener roast. It was a very nice night that wasn't too cold, so I allowed her to be outside until her Great-Mimi had to go in to get warm. She followed her inside.

Oh I love it when she smiles like this.

Sleep & Sickness

Alayna's sleep has been getting a bit better. Not great yet according to my standards! Most mornings she wakes up between 2-5 am, but yesterday she slept until 5:45 am and let me tell you that I felt like a totally different person at work. I actually had some energy and it felt good to sleep 7 hours straight. Now this morning we were up by 4:30 am. And that to me is actually night not morning. The thing that frustrates me the most is that she usually won't even take a bottle to go back to bed. Now what baby have you ever known to refuse a bottle!? Especially in the middle of the night or early morning! But normally, she refuses to eat and continues to whine or cry until she falls back asleep. Dana and I are finding that to be the biggest challenge right now. We are unable to make her comfortable or do anything to help her with this process of going back to sleep on her own. We replace the pacifier, turn on her mobile or light display on the ceiling, give her blankie to her, cover her up, move her to our bed, move her to the carrier, take her downstairs, put her in the swing, and the list could go on and on. We've tried it all except putting her in the garage!! Just kidding. We've decided to leave her in her crib and make her cry it out. Her sister, Lexi, who shares a room tells us she hears absolutely nothing. I believe her. I want to be a kid again.

Alayna has seem to have gotten over her cold for the most part. Her ear seems to be better too because we were battling that also. I'm crossing my fingers that she stays healthy. At the last appointment she got her first flu shot, so we will follow up with round 2 next month.

Future Appointments

We've got some upcoming appointments that are very important. Her IFSP yearly meeting is November 11th and that involves Early Intervention and her therapists from the CTC. On that same day we head to Iowa City to visit Dr. Mathews in Neurology. And then in early January, we will go to Audiology in Iowa City and they will perform another sedated ABR test to check her hearing. And I pray that in between times we can limit the number of pediatric appointments due to colds as much as possible.

Trivia Night - Tables are Full!

Like I have said in a few of my previous posts, we are completely overwhelmed with the generosity and support that we have received for Alayna's Benefit. We are happy to say that we've got a full house for trivia, but at the same time very sad to say that all of the tables are spoken for. The response has been so big that if we would have known this we would have looked for a larger facility. We apologize for this and invite you to please come join us for dinner, socializing, and the silent auction.

Chloe Is In Heaven

In recent posts I asked for prayers for Chloe, a one-year old little girl with 1p36 from Texas, who had been in the hospital. I am sad to say that the grandpa notified the 1p36 Family that she passed away on Tuesday evening. She is with God in a place where she is pain free, smiling, and peaceful. I ask that you say a little prayer for her family as they deal with her loss. They said that they are thankful God gave them Chloe that she taught them a lot. Her time here was short, but it made a huge impression on many people. I never had the opportunity to meet Chloe face to face, but I too felt a connection to her and her family. May Chloe rest in peace and be a guardian angel from above.

Rockridge Graduate - Please Say a Prayer

A 2008 Rockridge graduate and one of my former students, Brandon B., is battling cancer. There is nothing more that can be done for him here in the Quad Cities and they have also been to Texas. This week they are going to Ohio seeking any help that they can get. Please say a prayer for Brandon. And say one for the specialists in Ohio in hope that they can give the family positive news of being able to assist Brandon. Thank you.

Heaven’s Very Special Child

A meeting was held quite far from earth
“It’s time again for another birth,”
Said the angels to the Lord above
This special child will need much love.
Her progress may be very slow
Accomplishments she may not show
And she’ll require extra care
From the folks she meets down there.
She may not run, or laugh or play.
Her thoughts may seem quite far away.
In many ways she won’t adapt
And she’ll be known as handicapped.
So let’s be careful where she’s sent,
We want her life to be content.
Please Lord find the person who
Will do this special job for you.
They may not realize straight away
The learning role they’re asked to play,
But with this child sent from above
Comes stronger faith and richer love,
And soon they’ll know the privilege given
Their precious child so meek and mild
Is HEAVEN’S VERY SPECIAL CHILD. (Thank you Kristen for passing this on)

Halloween Pictures & Her First "Bug" of the Season!

Now how come she won't smile like this at Sears Portrait? It's like she has a phobia of any portrait studio. Again, it just shows that her world is a bit "smaller" than most of us and she likes her home.
She looks so cute in her Halloween candy corn dress from Daddy.
Oh those curls and that tongue!
Alayna will be 21 months old on October 29th. Wow, her 2 year birthday is just around the corner and it is hard to believe.

Alayna caught her first cold bug of the season and here she isn't feeling so good.

Another Try At Pictures

I've yet to get a really good studio photo of Alayna for quite awhile, so I thought I'd take her to Sears on Saturday evening and give it another try. As you can see in the pictures above, she was really happy at home. She had a nap and ate well all day. I thought, "Yes, we are going to do good!" Well, we walked into Sears Portrait and she instantly started crying. Oh brother! We tried to take just one picture, but that wasn't going to happen. Luckily, they weren't busy and allowed me to take her for a cruise around the mall and come back when she settled down. It took about 45 minutes of pushing her in the stroller, a very tiny cat nap, and a bottle and then we returned to the store. They actually got some really good shots of her showing nearly every expression she does other than a smile. We'll keep trying. It just seems like no time is a good time for Alayna. I've tried mornings, afternoons, and evenings and it all depends on how Alayna feels at that very moment. She is still very unpredictable and her stamina is still not very long.

Sick!
On Sunday morning at 12:30 am, Alayna woke me up whining. I discovered that she was extremely stuffed up and couldn't breathe through her nose. That's tough for a little one to handle. By 2:50 am, we were up for a few hours and it was apparent to me that pictures might not have went very well due to her not feeling 100%. On Sunday, she drank maybe 4 oz of fluid all day. She refused to eat cereal or veggies and didn't want a bottle. I had to help her drink white grape juice in a sippy cup to keep her hydrated. And I went to the extreme of setting the timer on the stove for every 25 minutes because she just wasn't drinking.

On Monday, I took Alayna to the pediatrician to get checked out. She had a 101.4 temperature and a bad cough by then. The good news was that her lungs sounded clear and that was a huge relief due to what happened to her nearly one year ago (2 weeks with RSV in Iowa City). He put her on an antibiotic in case she had an ear infection. It is so difficult to see in her ears due to large amounts of wax and small, long, and narrow tubes. She weighed 21 lbs 4 oz, but that was with all clothes on. So, my guess is she is still hovering around 20 pounds which is smaller than my other 3 kids when they were 12 months old. It is known that our 1p36 kids are smaller, so it isn't surprising.

This little bug has thrown her schedule off track and we've been up each night or early morning. Last night she fell asleep by 7 pm (way too early) and was up by 4 am. Then she fell back asleep at 6:15 am and I had to wake her to put her in the van to go to the babysitter. Not the ideal schedule for a school teacher mom! My ideal schedule for her would be to stay awake until 10 pm or even 11 pm and sleep until 7 am! Is that too much to ask for????!!!!!

Shriner's Clinic

The Shriner's Clinic a few weeks back went very well. A doctor observed Alayna and asked me to explain her condition as it was unfamiliar territory to him. That too isn't surprising because of its recent diagnosis. They accepted Alayna into the program, took her picture for identification purposes, and said that they would be in touch soon. It didn't take any longer than 30 minutes. Hopefully they will be calling soon to discuss future needs for Alayna and how they could possibly help out. I look forward to hearing from them.

Special Prayer Request

One of our 1p36 family members, little Chloe, is fighting for her life at the Texas Children's Hospital. She became very sick suddenly on her first birthday and ended up in the intensive care unit. She has been through numerous procedures and medications and the family is measuring progress minute by minute. I am asking that everyone say a prayer for Chloe and her family. The power of prayer has no limits. Thank you.

Overwhelming Benefit

Family and friends continue to plan the Trivia Night, Dinner, & Silent Auction Benefit for Alayna. The response in all facets has been overwhelming and we can't begin to express our thanks to every one involved.

Some Good Days & Some Bad Days

At least I got Alayna to smile! Lately, it hasn't been happening very much. Her and I are especially crabby because sleep is a commodity that neither one of us have had much of.
She just ate her supper and now she is waiting patiently to get out. I make her sit there for awhile and hope she digests what she ate. Otherwise, she is know to get on the floor and spit it up. More than likely that is due to low muscle tone, especially in her trunk. She is still a very "burpy" girl.
See her pink cheeks? I'm not sure what that is all about. However, last night was a rough one. She went to sleep around 8:15 pm, but was awake by 12:50 am. I was out of bed 7 times between 1 am and 4 am! UGH. I long for her to sleep through the night again. I've forgotten what that is like because we've been battling this for over a month. I'm wondering if she isn't feeling good. Tis the season for viruses. I plan on giving her some Tylenol to help her sleep tonight and hope it goes better than last night. I'd appreciate any prayers from all of you.
This is what she does when she comes home in the afternoon after I pick her up. Boy wouldn't I like to nap too! She takes a nap in the swing. Or should I say, she tries to take a nap in the swing! As you can see in the photo, her toes now touch the bar and the floor and it slows her down and eventually makes her stop completely. That is when she starts to kick her legs in somewhat of a "pumping" motion to try and get going again. It's not working very well. I usually have to give her a big push. I hope that I can find a bigger swing for her for Christmas. She really enjoys swinging and it soothes her. I have to have one! It's as simple as that. Truly, swinging is the only thing right now that works. It relaxes her enough to calm herself down and it has been a life-saver from day one.

I wanted to post a picture of the stander again. I am looking forward to having this for Alayna. I want to get her standing so badly and give her the chance to see the world in an entirely different view.

This is a sample of what the Kid Kart will look like. To me, it's a stroller on steroids that provides therapy to Alayna as she sits in it! Isn't that cool. It will provide her support in all the areas that she needs it, make her sit up straight, hold her trunk in, allow her to be pulled up to a table, and give her a comfortable means of transportation. Also, if she isn't walking by the time she goes to pre-school, this will have attachable bus straps that will allow it to be tied down in a school bus. Right now Alayna really hates to be carried for a long period of time. Running into Walgreen's the other night and deciding to carry her was a bad idea! I'll never do that again. And I should've known this because it has happened before. She had a "melt-down" in the store, started to bite at her hand and just got extremely frustrated. I think carrying her requires her to use more muscles and strength and she just doesn't enjoy it. She gets tired easily and a short trip into the store is way too much for her right now. So, this Kid Kart will be a good thing for all of us.

Sleep Issues

I wish I could report some positives about Alayna's sleep patterns lately, but that isn't the case at all. She is awake at least once in the middle of the night or in the early, early morning. And this can last anywhere from 25 minutes to sometimes 3 hours. Her behavior during that time is usually fussiness, whining, sometimes more loud crying, and slamming her legs down on the mattress. And about 50% of the time her eyes are still shut. I think it is truly a case of waking up and not being able to find a way to soothe herself back to sleep. She will never take a bottle and trying to feed her one makes her more frustrated. Oh, I wish she could tell me what was wrong. I feel so helpless.

Alayna still loves the pacifier, but she can't put it back in her mouth on her own yet. Do you know how frustrating this has become for me? Oh, I can remember the days I would put 5 pacifiers in my other children's bed just so when they woke up at least one had to be in reach. And occasionally I was awoke by crying because all of them ended up under the bed on the floor! I was okay with that though. When the day comes that Alayna has mastered this, it is going to be front page, headline news in the newspaper! Okay, maybe just on the blog. As you know, lack of sleep effects your entire life. I pray for more every night.

ALAYNA DEKEYREL'S TRIVIA NIGHT - SATURDAY, NOVEMBER 15TH

Alayna's close family & friends are planning an exciting benefit to help establish the Alayna DeKeyrel Benefit Fund. Monies raised will be used for the purchase of the medical equipment explained above and future purchases and help defray the cost of continual physical, occupational, speech, and developmental therapies.

We invite you to come and join Alayna at the Teamster's Union Hall on Andalusia Road. Dinner begins at 5pm and consists of pulled pork sandwiches, sides, and desserts catered by Guy And A Grill ($8 per plate). Non-alcoholic beverages will be available for purchase, otherwise, it is BYOB. Trivia begins at 7pm and a silent auction will be going on throughout the night. 50/50 Tickets will also be sold. The food is guaranteed to be great and the trivia will be alot of fun!

The benefit committee's goal is to pack the place! If you'd like more information, feel free to email one of Alayna's family members or myself at angela.dekeyrel@yahoo.com.

Thank you in advance for your support. It's people like you that make a difference in the world and we appreciate it more than words can express.

Lots of Updates!

Smiling at mom! She loves to play and be "talked to."
Alayna watching mommy talk.
I actually was excited to turn around and see this! Alayna was on the floor playing and I had set a Lia Sophia catalog down in a place that I thought was out of her reach. I got up for just a minute and came back to her having a hold of one page and her ripping of another. It was exciting...she may finally be "getting into things" very soon. I would have never said this with my other three, but remember milestones with special needs children are celebrated a bit differently!
Alayna continues to enjoy musical toys and this is a "new" piano. Our local area has a newly opened second hand store called Once Upon A Child and I highly recommend it for toys, clothes, or any other "baby/infant" need that you don't want to spend full price for. This was from there. UOAC has a website and is a chain, so check out if your local area has one.
More playing! And do you see the orange and green toy bar in the background right above her head? Well, I've said before that it's her favorite toy not only for when she is laying on the ground, but for her also to use when she sits. And they use it at therapy too. It was discontinued in stores, but I found 3 of them at Once Upon A Child. They are normally $25 and I bought each of them for $9.50! Bargain!!!
"The camera again, mom?" Alayna loves to suck on her hands, but she is using her blanket more and I'm okay with that. She puts it in her mouth often.
Here she is one morning in the van heading to Patti's for the day!
I know this is a blog for Alayna, but I'm a proud mom and have to squeeze the others in every now and then. Here is Alexis, 10 years, sporting her new Firebirds uniform.
Alexis is one of the team's pitchers and she is doing a marvelous job. Look at that form! She gets great coaching from all of her coaches, but especially from Traci, her pitching coach. Alexis has been working very hard at pitching and I hope it all pays off for her someday. We are very proud of her.

This is my superstar, flag football player, Drake! He is 8 and enjoys the sport. Last weekend he got 2 TD's and "sacked" the quarterback! The other day he asked me if football players get paid in college. He must be thinking long term here. Because then he said "Well, I know they do in the NFL. Like $200 a day!" Drake says he wants to play for the Dallas Cowboys. We are very proud of him too.

Siezures and Phenobarbital

From my last post, it is obvious we've been dealing with some rough waters around the DeKeyrel house, particularly with Miss Alayna. I just want to know why she is so crabby, fussy, and crying so much. Nothing seems to make her happy and these "spells" come on with no warning and last for 20 minutes to sometimes over an hour. Talk about wanting to pull your own hair out. After reading many messages from others on the blog and on the yahoo support group site, I began to question whether or not these instances could be seizure related. My mom had raised this same question, as well as many others.

Let me say again that God does work in mysterious ways. Last Thursday I went to Patti's to pick Alayna up after school. She was asleep on the floor. We talked for awhile so that she could rest a little longer. As she began to wake up and stir, she opened her eyes, but they were in a dead lock straight forward. It was kind of like she was in a daze and wasn't quite awake. Then she began to act like she was choking and started to do strange things with her mouth. Thankfully, she never stopped breathing. It lasted for about 1-2 minutes. Nothing we tried "snapped" her out of it. We just had to be patient and let it runs its course. Patti and I were actually caught off guard and not expecting this to happen at all. I am glad though that it did happen when both of us were there to witness it.

I immediately called the Department of Neurology in Iowa City when I got home. She was under Dr. Matthews care when she was in the hospital for RSV last November. Remember, during that time she had 2 siezures at IC and was put on a daily dose of phenobarbital. She has been off of that medication though since early May. I reaccounted everything that had happened in addition to letting them know how fussy she had been, not sleeping well, and a slight decrease of appetite. The nurse relayed the information to Dr. Matthews and she said it sounded like a seizure to her. The decision was made to put Alayna back on 5mg of phenobarb 2 times a day.

Alayna did end up having another seizure at the Rockridge Homecoming Chili Supper while we were in the high school cafeteria. It didn't last as long, but it looked the same as the other one about 2 hours earlier. The good news is that I haven't noticed any more since then. It doesn't comfort me that I can't rule out the possibility of her having them while she is sleeping or maybe a small one when she "spaces out" so to speak.

The phenobarb makes her sleepy not long after she takes it. We've been giving her it in the morning and as late as possible at night. It tastes terrible and giving it to her in a syringe doesn't always go very well. It's even flavored bubble gum, but that isn't the best disguise. We try to put it in food or a bottle, but we have to guarantee that she is hungry or she won't take it and that is a problem. She can't miss a dose or she poses a risk of having a seizure due to the withdrawal of it in her body.

Her sleep pattern has been majorly disrupted, which makes our sleep majorly disrupted! For the first few nights she was waking up every 3-4 hours and wouldn't fall back to sleep easily. It has gotten better over the last few nights, but I'm still waiting for that night she sleeps a solid 8 hours and no middle of the night interruptions. The two things that I contribute this problem to is the medication and the amount of napping she does during the day because of her body adjusting to it. I don't know!

Shriner's Clinic

Alayna will be going to the Shriner's Clinic on Saturday, October 4th. They support many families who have children with many different kinds of disabilities. One of which is chromosome deletion syndromes. I was so excited to see that in their pamphlet. I have to learn more about this wonderful organization and I look forward to seeing if they can help out our little Alayna. I am thankful that we know the Pape family because they are active in the Shriner's and they are the one's who recommended it to us. I will keep you posted on this as it develops.

More Vocal

I just have to quickly mention how much Alayna has become more vocal. We are used to hearing the usual grunts and nasally "oooohhh's" from Alayna, but she is getting sound to come out of her mouth. It isn't sounds that I refer to as internal sounds. The other kids are getting a kick out of it and like to talk back to her in the same way. She really talks alot in the van. Hey, it's a start and it is a promising one at that!

1p36 Conference

This year's 1p36 Conference in Boston went very well. I hated not to be able to go, but it is an expense to get out there and we just went to the one held in Florida last October. If you check out Whitney's blog, Nate does a wonderful job of reviewing the information that was presented. Anyway, the next year's conference is already in the beginning stages. A poll is taking place right now on our support group site to see where it should be held. I'm keeping my fingers crossed, because right now Indianapolis, IN is leading and that is so close to us. These conferences are one of the most valuable opportunities for us to meet other parents and children and share ideas and feelings. It reaffirms that we are not alone in this adventure and that there are people out there raising children just like our sweet Miss Alayna.

Mark Your Calendars! Saturday, November 15th

I can't say enough about how lucky Dana and I are to have such supportive families and caring friends. A group of special friends is planning a Trivia Night Fundraiser for Alayna to help create an account used for equipment (Stander and Kid Kart), therapy, and other medical expenses. They are planning a fun evening with a meal, silent auction items, raffles, and of course, TRIVIA. Oh, and a special appearance will be made by Alayna, the guest of honor for that night. It will be held at the Teamster's in the Rock Island Industrial Park right off of Andalusia Road. Alayna thanks everyone in advance for their support and asks you to please join her in the festivities. If you've never been to a trivia night before you need to come, it's a lot of fun.

Journey Ahead

We continue along this journey with Alayna and thank all of you for your thoughts, emails and continued prayers. It's a journey and when we hit destinations along this path like milestone moments we celebrate.

The Up's & Down's of 1p36 Parenting

Alayna trying so hard to sit. She is now 19 months old.
Alayna continues to love toys that play music or light up. This bus was one of the boys baby toys and it has been a life-saver. She loves it.

Alayna smiling in the stroller at Adventureland.
This is another toy that Alayna loves. We have 2 of them - one for the diaper bag and one for home. I used one of Alexis's hair ties to strap it to the stroller so she could hit it herself and we wouldn't drop it.
Alayna is becoming better with the self-feeder. She still drops it, but holds on to it longer than before. Here she is having some green grapes.
It was funny to see her face when she bit down on the grapes and they "popped." She likes to hold things and as you can see is still making the connection that it is actually her holding it. It's like she enjoys checking herself out and is starting to realize those are her hands and they have a greater purpose other than being sucked on!

Finally a smile....because we haven't had too many of them around here lately. I'll explain later!
I had to sneak a picture of Douglas in here. This is one of the many frogs he has found over the past week. He tried to bring it in the house, but fortunately I went to the garage at the right time and stopped him. I told him I'd go get the camera instead and take his picture with Mr. Frog. As you can see, he is so proud! We have so many tree frogs around here and my boys are ALL BOY and will pick up just about anything. Douglas did sneak a little tree frog in the other night while I was on the phone and it wet itself all over him. it wasn't too funny at the time, but now I laugh!

My dear friends, it's time for another heart to heart. Remember, you are my scapegoats and I'm sure I'll feel better after I'm done typing what I need to say. Like I said in my early days of blogging, this is my therapy and you read at your own risk.

I'm going to start first with the "down's" my family has been dealing with lately. It's always better to end with the "up's." Raising Alayna has been by far the biggest challenge I've ever faced. I do consider myself a mentally strong person, however, having Alayna has put me to the test and I often doubt how mentally stable I really am. Lately, Alayna has been going through periods of constant crying and/or hand and arm biting. These instances just pop up without any warning. A little one's crying for such long periods of time each and every day can wear on anyone. I don't care how strong you are, it is tough to listen too. And to some of you, that might sound minor or silly, but I'm not kidding when I say it is driving my entire family crazy. It's not fair to my other three kids that I have to devote so much attention to Alayna. It's not fair that they have to put up with the crabbiest, short fused mom in Illinois City. Alayna's behavior is so unpredictable. It makes it tough to go anywhere because we never know how she will behave. So, our house is pretty darn loud and chaotic until they are all in bed. It's a challenge helping the older two with homework, keeping Douglas busy doing something, all at the same time dealing with an extremely fussy, high-maintanence Alayna. Sometimes I just join in with her crying.

So, you are probably asking yourself "is she is teething or does she have something wrong with her?" The answer to that is "no" and "no." I have tried to document when these "outbursts" occur and see if there is a common trigger and I haven't found anything. We've been to the pediatrician for a complete check-up and all looked good. We tried putting her on an oral antibiotic for a possible ear infection, but that has not been the solution. She went back to Iowa City this past week and they also say her ears look good. We have also increased her food intake to make sure it wasn't hunger and that isn't the answer either. I think it's just Alayna.

After reading posts on our 1p36 Support Group site regarding this topic, I just think it is something many of the 1p36 kids go through. They sometimes cry a lot and the reason is unknown to the parents. Being unable to communicate may contribute to part of it and also being somewhat immobile. I am glad to know that we are not the only 1p family going through this. I am praying it is a phase and that "it too shall pass." I'm truly at a loss and it is very frustrating. I want a smily, giggly, happy baby and lately that has been a rare thing at any time of the day. Today, on the way over to Lexi's softball game, Alayna was crying pretty hard for the duration of the ride. Douglas was in the van with me and I could tell he was getting frustrated too. He said "Mom, we need a new baby." I said, "Why do you say that Douglas?" And he responded, "Not this one. This one cries all of the time." It is just as hard for our other 3 children to deal with this as it is for Dana and I. My heart gets sad. Sometimes, my world feels like a very lonely world. No one quite knows what we are going through.

Alayna has cried so much lately that her "voice" is horse and her arms are bruised from biting at them. Thankfully, she hasn't bit them hard enough to draw blood, but her bruises are pretty noticeable. And that is so hard to explain to people who have no idea what 1p36 Deletion Syndrome is. All we can do is reinforce not to do that and pull them our of her mouth. Let me tell you though that it is tough sometimes because she is strong and she gets really frustrated and nothing stops her.

Another issue that I've been dealing with is the feeling and knowing that we are a "different" family. I'm not sure if that is the right word, but you get my drift. I'm well aware that I'm still dealing with this process of acceptance. I thought I had that taken care of, but obviously not completely. I've noticed the last few times that I've been around people from our community or other families, I tend to withdraw. And especially around those families that have children close to Alayna's age. I'm just not my chatty, out-going, talk to everyone self. I say quick hellos and keep conversations short. After coming home from "Bookbag Night" at the kids elementary school I told Dana about this realization and how I don't mean to do it, but I think it's just my defense against becoming upset, crying, or facing the fact that Alayna is not developmentally appropriate for her age. He validated this feeling by telling me that he too has had difficult times. One occuring while at a close friends house watching their little girl a month older than Alayna run around and carry on. It is so hard and I'm not sure it will ever be easy. It's something we will probably deal with the rest of our lives. So, I would like everyone to know that if Dana or I seem distant sometimes, it is probably those defense mechanisms kicking in to help us cope. We do not do it intentionally, but please understand it is part of raising a child with special needs and the process of completely coming to terms with that.

On the "up" side, however, are the cute smiles and short, little giggles from Alayna. We love singing Itsy-Bitsy Spider to her because of her instant recognition to the song and the grin that comes along with it. Even during her fussiest, temper-tantrum moods, this song has been known to be the only cure that will snap her out of it. When she makes eye contact with her sister and brothers, Douglas especially because he is always in her face, and lights up with a grin, it melts my heart. When Alayna does something to surprise us and her siblings are the first to see it and they scream "Mom, look!" it is a very exciting moment. They too long for those little accomplishments that require so much hard work from Alayna. Watching her hold her sippy cup or self-feeder and see her excited that she is doing it herself is cool. We can't wait until she is totally cup feed and no more bottles. One of my favorite times is when Alayna is comfortable enough to be held over my shoulder and as I gently rub her back she just cuddles up and every one of her muscles relaxes.

There are many rewards that come along with raising a special child, but lately it has been tough. I am always the one saying take one day at a time. But in reality, that is a lot to ask of me sometimes! I am human and normal, daily activities are enough to trigger a thought into our families future. I can hear a wedding song on the radio and it's enough to send tears pouring down my face. I can see an advertisement for a college and that will also make me cry. I watch my daughter, Alexis, pitch her first ASA softball game and while I am so darn proud of her I can't help but cry and think of my little Alayna. Don't get me wrong, I am proud of Alayna, but in a different way. And it's this "difference" that I have to get past, again, not really knowing if that will ever be possible.

The emotional side of raising a child with any kind of disability is indescribable in words unless you are the one in that situation. No amount of money or services would ever be enough to ease that part of it. It can be a lonely place sometimes and societies ignorance sure doesn't help the matter. I've said it before that God has the ultimate plan. I wonder what that is every single day and I ask him every single day. And I sometimes ask him if he was sure he picked the right family for Alayna, especially during my crazy moments. And, yes, I still cry. As a matter of fact, as I type this, tears roll freely without effort down my face. I'm not sure whether I cry more for me or more for Alayna. I say my prayers every night asking for guidance, strength, and patience to get through the next 24 hours. I pray that things will eventually get easier and we will begin to be able to enjoy Alayna more and that her "moods" will pass. It truly is an effort for my entire family to just make it through each day. I pray to God that someday each one of the older kids will look back on this time and realize that all of the sacrifices made were to benefit the entire family and I hope they will understand the "hidden" stress their parents were going through. I pray to God to help me be a good mom because I doubt my effectiveness more than ever before. And I pray for all disabled children and their families, especially those on my 1p36 Yahoo support group, because without them I would be lost. They are my "people" who help me keep going. And lastly, I ask for forgiveness, because I'm the first to admit I'm far, far away from perfect.

I am sorry it took so long for a new post. And I just realized this is a long one. I hope to get things going again and I'll try not to keep you waiting and checking so long this next time.