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.

Pictures and Info To Share!

This is sort of how Alayna's stander may look. It is a Squiggles Stander by Leckey.

We continue practicing how to sit up! She is doing quite well, but still loves to have her fingers in her mouth.
She still loves her bath and as you can see has fingers in her mouth again!
All smiles...for now anyways...she has been a bit on the crabby side lately (?)
It surprised me the other night when I was dressing Alayna and turned my back for just a second and she had found her comb on the bed and picked it up! She was checking it out and trying to put that in her mouth too!

Computer Issues At Home

I still can't get my computer to work at home. It isn't reading anything we put in it. So I had to resort doing this at work. And yes, I did do this after school time. So, this is going to be a short overview of yesterday's appointment with Trinity and the CTC.

Stander and Kid Kart Update

Yesterday, Alayna was measured and put in a Squiggles Stander made by Leckey. The rep brought one and we gave it a try. Alayna fit in it quite well and it has special features for her that made us go with this one instead of a Rifton. It comes in pink, so I'm happy and it is easily transportable which also makes me happy. This will go back and forth from our house to Patti's or Grandpa's during the day. Alayna also was measured for the Kid Kart Tlc which is bigger than the Kid Kart Express and will allow for longer use and growth. Each item is very costly to say the least and each one has "features" that are extras. Each additional "extra" has a code and a cost. It is amazing how fast things add up. It was estimated that the stander would be $3,000-$4,000 and the Kid Kart would be $2,000-$3,000. So, we are waiting for the rep to run both of these through our insurance and we'll just see what happens. Please say a prayer that both get approved and that the insurance is willing to cover ALL (okay, if not most) of the cost. Alayna needs both of them to help her development.

Developmental Pediatrician Visit & Other "BIG" Things To Share

Photo of the Kid Kart

Developmental Pediatrician Visit

Last Monday, Dana and I took Alayna to Peoria to visit Dr. Morgan, Alayna's very important developmental pediatrician. The last time we had seen him was in January this year. His role is to access where Alayna is developmentally and guide us to the appropriate interventions and make sure we are doing all we can to get Alayna to her fullest potential. These kind of appointments tend to bring out an entirely different realm of emotions for both Dana and myself. It's unlike going to get her ears cleaned out or to the pediatrician for shots. It is a major reality check and Dr. Morgan says things like they really are. Let's me just say that he doesn't hold back much. It is hard for our ears to hear sometimes and it takes us out of our "safe bubble." But the great thing is that Alayna continues to make strides and improvements all over the board. And Dr. Morgan stressed that each of these milestones will be huge celebrations in our home and he is so right.

Dr. Morgan thought that Alayna's therapy agenda looked pretty good, but reiterated the fact that what we continue to do at home with her is what makes all the difference. He did have two main recommendations for us to consider. They were to get a stander and to think of a means of mobility for Alayna. A stander's purpose would be to help Alayna learn how to bear weight in her legs and just get the feeling of what it is supposed to be like standing up. Doesn't that sound odd? When I really think about what that means I say "Wow" every time. It is a task my other children just did and I never thought about how much "hard-wiring" it takes for our brain to help our muscles do this. I hear very positive feedback from my support group on how they provide so many benefits. A stander will also give Alayna a different perspective of the world around her. Right now she sees a lot of things sideways because she still lays down and rolls on the ground a majority of the time. That has got to be getting old! Kim, Alayna's PT at the CTC, had previously made this recommendation, so it is reassuring to know that she and Dr. Morgan are thinking the same thing.

The second recommendation for us to consider was getting a means of mobility for Alayna. Honestly, this one took us both by surprise and we were a bit hesitant at first. We use a typical stroller most of the time and it works, so why do we need something different? Alayna is only 20 pounds and fits in all standard strollers. It did get me thinking though because I can't say with confidence that Alayna loves her stroller. Well, there are some benefits to purchasing a Kid Kart that we hadn't really thought about like allowing Alayna to sit up higher and be at the level she'd normally see, be pulled up to a table, and be forced to sit up more properly. Many of our support group parents have also said nothing but wonderful things about the Kid Kart and they say it provides "therapy" every time you put the child in it. And even though it is at least 2 years down the road, it could be a means of mobility if Alayna had to ride the school bus or if she had to use it in the classroom. Honestly, Dana and I have high expectations for Alayna and we hope she is walking by that time!

In conclusion, Alayna has therapy at the CTC this Tuesday and a representative from Trinity will be coming to do some measurements on Alayna and we plan on getting both the stander and the Kid Kart. We are excited about the benefits both can provide her. It was recommended to us to purchase both at the same time so that is what we are going to do. And from what I have read, the Kid Kart can be ordered in pink....so I'm happy!

Hip X-ray

While we were in Peoria, Dr. Morgan wanted to get an x-ray of Alayna's hips just to make sure the development was okay. Especially since she isn't putting much weight on her legs. Unfortunately, the x-ray machine that is next door to the Easter Seal's Building where Dr. Morgan is located was down and not working. So, we had to resort going to the hospital (which every time I walk the main corridor it brings back memories from that first night we rushed Alayna down there not knowing what was wrong with her). And of course, we were put in a waiting room and waited and waited and waited. Dana finally found the nurse that escorted us there and come to find out they forgot about us. Go figure! It is so much our luck! So, a 3 minute x-ray took over an hour and a half. CRAZY! Let's just say it was a long day.

Next Follow-Up

We are not scheduled to go visit Dr. Morgan again until 9 months, which will be right at the end of the school year. I hope by that time she literally knocks the socks off of him and his jaw drops to the floor with all that she is doing! That would be awesome.

Sitting and Hand-Biting

I wish all of you could see Alayna sit! She is doing so wonderful I can't express it in words. She is now sitting for minutes at a time, not seconds. She is reaching for toys that are put in front of her and grabbing at them and not falling over. I've seen her put her hands down to the sides to try and stop her from falling. Her tummy muscles are getting much stronger as I can see her pull herself up to remain sitting. Lexi, Drake, and Douglas are loving it because it gives them a whole new perspective of play with Alayna. Douglas is the one who can't stop smiling and giggling at Alayna as she is sitting. You can tell how proud they are of Alayna. I am working on video taping her sit and if I can get my buddy, James, to help me figure out how to download it, I'll get it on ASAP.

Hand-biting has ceased. It is great news. Now, don't get me wrong, Alayna still loves her hands in her mouth, but she is just sucking on her fingers. Her hands are totally healed and she doesn't have the marks and sores like she did a few weeks ago. I hope she continues the progress! We continue to reinforce not to bite at her hands and she is responding.

Camera/Computer Problems

I've got a few new photos of Alayna I'd like to share with all of you, however, I am having technical difficulties that I've never had before. It has something to do with the USB Port and my camera not recognizing each other. I've tried everything I can think of to fix it, but no luck. That means I can't upload my photos to my blog and that makes me angry! I hate when technology doesn't work. I'll keep trying.

I will keep you posted on more Alayna developments and let you know how Tuesday's appointment goes for the equipment.

Our Little Angel Is Back!

Look at that wild hair! Believe it or not, it looks so much like Lexi's hair when it finally started to grow.
Alayna sits really good in the Bumbo seat. She can easily last for 20 minutes, but sometimes even longer. It's so nice.
Here Alayna is reaching for her toy to get it to play music again. She is really coming around and understanding the "cause & effect" to particular toys. Alayna does the best with the ones she is familiar with.

Alayna doesn't really like to lie on her side, but this is such an important skill for her to grasp. It allows her to play with a toy with her free arm and it helps her get into the sitting position.
More practice....I have to take advantage of those moments she is in a good mood and will tolerate it.
Sitting all by herself! Okay, I have to be honest...it is only for seconds at a time...but it is still a great start. She still likes to sacral sit like she is in this picture and not fully extend her postural muscles. And of course, her hand in her mouth is a big distraction.
And then this happens!!! She falls backwards or to the side and doesn't try to stop herself. We continue to work on putting her hands down to the side to catch herself, but it hasn't clicked yet! Still very little defense skills.

Iowa City Visit

On Wednesday, Alayna and I headed to Iowa City to visit Dr. Manaligod in the Department of Otolaryngology. The plan was to do a hearing check in the audio booth and then see the doctor to check on her tubes. Well, I knew the hearing test was probably not going to go good. Why, you ask? Alayna has been crabby for the past month. She hasn't been sleeping well, her therapy sessions are miserable, and she just hasn't been her happy self. I was right. We went in to the hearing booth, sat down in the chair, and she wanted absolutely nothing to do with it. The hearing specialist was on the other side of the glass and tried to get Alayna to look at the speaker that had the sound coming out of it. Alayna wouldn't even open her eyes and cried the entire time. I told them we could try again, that my primary concern was her ears and the tubes.

So, we headed back to see Dr. Manaligod. Alayna's left ear was my big concern because it had some yucky discharge coming out of it. And not to mention that both tubes were clogged at last Friday's pediatrician appointment. A different doctor came in to check out her ear and it needed to be cleaned out. It took two nurses and myself to hold Alayna still enough for the doctor to do what he needed to do. It was like "roto-rooter" for the ears. He used extremely tiny vacuums, kind of like what you would expect to see at a dentist office, to get the job done. This may sound sick, but I couldn't believe the amount of fluid I could hear coming out of her ear. Poor baby cried the entire time and continued to cry after the procedure was over. I literally wanted to pull my own hair out to give myself something to cry about too! Her left ear definitely had an infection in it too. To make a long, stressful story short Alayna was given a prescription for Ciprodex ear drops and set up for another hearing test on September 3rd.


Our Angel Returns

When I say that Alayna's behavior and demeanour did a 180 degree change overnight, I am not kidding! The very next day we had a new kid in our house. She slept through the night (and has ever since that day) and her PT session the next day at Comprehensive Rehab went the best it has for a very, very long time. It was awesome and both of us were smiling all day long. I could not believe it. I'm convinced that her left ear had been bothering her for quite a long time. I'm also beginning to wonder if her severe hand-biting about 2 weeks ago was attributed to her being in some pain. Let's just summarize by saying it is so nice to have sweet Alayna back.

Things We Are REALLY Working On

There are about three things that I am bound and determined to get Alayna to do as soon as possible. After having the "not so pleasant" car ride back from Iowa City, I am being very aggressive about getting her to hold her own bottle. It would've been so nice to just hand her a bottle and allow her to feed herself. She is doing exceptionally well with this new task. The only thing is she drops it every once and awhile and doesn't realize that consequence. It is cute, she really gets proud of herself and likes to have that freedom of doing it herself.

Another thing we continue to work on is holding and drinking from her sippy cup. She is doing much better about not spitting out the juice and swallowing it. I've noticed a huge difference since her ears have been opened up! And lastly, I'd love to see her hold a Zwicker toast stick or a bitter biscuit and eat it. Lots of work to do!!!

Possible Fundraiser/Trivia Night

You know this world has some pretty nice people in it. My mom works with a lady that is willing to head up a fundraiser for Alayna. How nice is that? It is such an overwhelming feeling to know that so many people care about Alayna and want to see her accomplish all that she can. And knowing that this person is willing to take on such a big task to benefit someone she really doesn't even know makes me speechless. I just wanted to put the bug in all of your ears to let you know that if you are interested in helping out Alayna, be planning a trivia table! We are not quite sure of where and when this will be, but I'll keep you all posted. Alayna is in need of a stander and braces right now and her therapy will be an ongoing event throughout her life. So, we would really love to see an "Alayna fund" created for her future needs.


Continued Support

I just wanted to say thank you again for all of your support. I read each and every one of your comments on the blog even though I may not comment back each time. We continue to travel on this journey, and even though it may be tough sometimes, your support and Alayna's smile and laugh make everything seem alright. God Bless you!

18 Month Check Up Report!

My four little monkeys! Douglas is 4 and always smiling for a photo, Drake is 8, charming and sweet, and Alexis is 10 and is huge help to me! And of course, Alayna is 18 months!
Drake didn't want to be in the "group" picture. He wanted one of his own! Now he cooperates and looks at the camera!

18 Month Check Up

Alayna went to see Dr. Neptune, her pediatrician, last Friday. The first task was to get weighed, like usual, and I prayed to see 20 on the scale. And low and behold she is 20 lbs 9 oz! I was thrilled to see that she had gained. No, it isn't much, but she is getting bigger and putting on weight at her own pace. We will take it! And Dr. Neptune had no complaints either. I was curious at to where that weight fell on the "typical" growth chart and it puts Alayna at about the 5th percentile. So, she is on the chart, but I hate to reference that chart too much with Alayna because our 1p36 kids have a development of their own and it isn't fair to compare them with "typical" developing kids. She is 30 inches which is at the 10th percentile and her head circumference falls at the 5th percentile. She's proportional!

There are a few other things I would like to note. First, she has clogged tubes in her ears. She has tiny ear canals, like most of the other 1p36 kids, and that darn wax gets stuck. So, we are trying Ofloxacin drops two times a day in each ear to loosen it up. Alayna goes to Iowa City to get them checked out this Wednesday and it sure would be nice if the doctor could see the tubes. Secondly, I am sick of the helmet. Alayna still wears it pretty faithfully, but she still has this one little spot in the back of her head that dents in. Like Dr. Neptune said though, her brain has to grow and the head has to grow to get that to change. We can put the helmet on her for as long as we want, but that growth needs to occur to get results. I don't know what to do! I'm going to her helmet doctor this Tuesday and see what he advises. I've put it off for so long and it is time to check back in with him on her progress. Also, I asked Dr. Neptune his feelings about Alayna still in a rear-facing car seat. He asked if it bothered her and it doesn't. He said just keep her rear-facing and to not be in a big hurry to turn her around just as long as she has plenty of leg room. Lastly, the only medication that Alayna is taking is myralax in her bottles. I feel so very fortunate that she is healthy and doesn't require any other medications. Overall, the check up went quite well and he was happy with her progress. We continue to be so proud of our little Alayna!


A Full Night of Sleep

I just have to tell you that I miss sleeping through the night. Alayna was doing so well with that and all of a sudden we took a turn about a month ago. She continues to go to bed around 9:00-9:30 pm, however is waking up sometime between 3:00 am and 4:00 am for no apparent reason. Sometime she fusses, but most of the time she just lays in her bed kicking her legs awake. Of course, when she gets tired again she fights her sleep and fusses. It is funny (sometimes) when I hear her trying to put her pacifier back in her mouth. She is not able to do this consistently. She will grab it and click it on her helmet trying to find her mouth. That's when I'm up and down, up and down, until she falls asleep. Or I'm pushing the teddy bear in her bed that plays music and lights up or the wall projector that shows a light show. She still sleeps in the same room as Alexis and it did wake her up last night. I didn't hear Alayna at first, so I better turn up the baby monitor!

I do have to tell you though that on Friday night, the day of her 18 month check up, she slept all through the night! It was marvelous and I felt so good the next morning. Maybe all that being out of the house that day wore her out. She wasn't able to follow her normal routine of cat napping when she wanted. Maybe I need to take Alayna to the shopping mall more often!


Hand Biting

We continue to battle the hand, finger sucking and biting with Alayna. It is a constant battle pulling her hands out of her mouth and offering her something else to chew on like her pacifier or a toy. Of course, she prefers her soft fingers. The only time Alayna bites her hand is if she is in a terribly frustrating moment which usually happens when she is overly tired or at therapy. She has made herself bleed once and has some pretty good sized sores on her hands. UGH...it is frustrating but we are determined to break this behavior.

Other Things In Progress

Next week I will have more to report. Alayna has therapy 3 times and an appointment in Iowa City. I also have on the agenda to call her PT at the CTC and see what the progress is on getting her a stander and braces. Our 1p36 Support group has formed a non-profit organization to raise money and spread awareness. My goal is to have a fundraiser in the near future, maybe a bake sale, to help with this cause. I'll keep you all posted!