Alayna, Our Little Ray of Sunshine!

A gorgeous rainbow popped up right outside our house one recent afternoon. I couldn't resist taking a picture. Everyone wonders about rainbows and usually stops to awe at their beauty and uniqueness. They are rare and not found all of the time. Kind of like Alayna - one in a million and full of beauty! She's our little ray of sunshine.
Can you believe that we had to wait close to 5 months to get her to smile for the first time? Now she smiles tons and it will brighten anyone's day. She just has this toothy grin and bright eyes that look at you so innocently.
Smiling up at big sister Alexis.
Here is a major problem that I have a feeling we will battle for quite awhile. Yes, her hands are constantly in her mouth! She is teething, but it has been shared by other 1p36 parents that sometimes it gets worse. Maybe a little Tabasco sauce would do the trick! Just kidding.

Yes, I am completely over the helmet. We've had it in the family now for a little over 5 months. I'm ready to see it go! But we are still waiting on one particular spot on the back of her head to pop out someday. Believe me, I check it every single morning. I continue to clean the helmet each night with soapy water and sometimes rubbing alcohol, but it is taking on an odor of its own and I can't seem to do anything to get it away. Plus, summertime doesn't make it any easier because she sweats in it so much.
She continues to be such a good sport wearing it though. But she enjoys pulling at her hair when it is off. I think she does this just because she can! One benefit of having the helmet on during our therapy sessions at home is that I can easily grab the back of it and pull her head up.
More hand in the mouth and more swinging. She is absolutely addicted to movement.
Often times throughout the day or night, especially after she has eaten, I still put her in the infant carrier. Mostly to keep her upright and to reduce the chance of spitting up.
Now this picture was taken right after the above one and at the same angle. See how she has the carrier rocking? She loves to kick her legs and get it rocking as fast as she can. It's so funny and she smiles the entire time. One day when she is able to swing on an actual swing set she is going to be one heck of a "pumper" with those legs!

More time in the swing and more hands in the mouth! She is beginning to arch her back and try to sit up in the baby swing like in this picture. I wonder how much longer she'll be safe in it? We keep a close eye on her and I know the day is coming when we will have to put it away. (I'm crying)
A cutie in one of my big sister Alexis's old outfits. Bins of clothes around here are so handy.
Here is a picture of what she does to her hands. She has a tiny callous on one of them from all of the sucking she does. Thankfully right now the only time I've seen her bite her hands is when she is frustrated and that is usually at therapy.

Glad to be back everyone! I'm on summer vacation and honestly I have been too lazy to do any blogging. You know I truly feel that I get more done and I'm much more organized when I have to work during the actual school year. In the summer time I tend to "shut down" so to speak knowing that I really don't have any deadlines to meet. It's been very busy around here lately and I'll try to update you on some things happen with little Miss Alayna.

Portable Swing

One of my teacher friends loaned me a portable swing to take to ball games. I thought what can it hurt. I'm willing to try just about anything to get Alayna comfortable enough that I might actually be able to enjoy a game. We took it to Lexi's ball games about 2 weeks ago and it was heaven! She loved swinging (of course), the toys to play with, and the sounds and lights. She was an angel. Instead of normally fighting her sleep during nap time, she fell asleep quickly and easily and I got to watch the games. We've taken it to every ball game since. Thank you Nikki! It is a lifesaver.

Speech Therapy

We had our second try at speech therapy last week. She did pretty good tolerating it for about 20 minutes and then completely shut down on us. But I did get some great advice from the SLP (speech language pathologist) to begin to try on Alayna. Since then I've bought her a new Hello Kitty electric toothbrush to try to get her to allow me to put it in her mouth and brush her teeth. This will not only stimulate her mouth, gums, sides of her mouth, but she may also like the vibration feeling. Right now she tends to put her lips together as tight as she can and not allow me to put it in. However, once I get her to open up she does much better. I was also given a rubber NUK brush to use to stimulate her tongue and sides of her mouth so that hopefully she'll learn the "boundaries" of each one. They have to realize that their tongue is a separate thing and can move from side to side. This helps transition to eating more solid foods and plays a big role in chewing. Wow! These are definitely things I just thought naturally occurred. This is tough work for Alayna and it boggles my mind!

Vocalizing

Alayna has been more vocal again for the past few days. She goes through spurts of this. I just love hearing what her voice may possibly sound like in the future. I love that brief moment where I think she is trying to chime in the conversation and tell us something. It is priceless. Most of the time she is all smiles, but no sound. So as you can expect this type of "cooing" melts my heart and I freeze and watch her every single time. It gives me great joy to see her make a sound and actually move her tongue. Today in therapy her PT and I kept saying "mom-mom" and I swear she said it. Her PT and I looked at each other and we were thinking the same thing. Her PT really enjoyed hearing her voice today too!

Occupational and Physical Therapy

Since therapy has been cut back to 40 minute sessions instead of 80 minute sessions, it has been going much better. 40 minutes is about her limit right now before she starts to completely shut down. Today we had PT and on the ride over I had to pull over twice to replace the infamous pacifier. She cried nearly the entire ride. I thought oh great, this is going to be another wonderful therapy session. At that point I wanted to throw in the towel, but that would be the easy way out and Alayna would love that too. And that gets nothing accomplished. So, I let her take about a 10 minute snooze in the van and took her in to PT. As soon as the sound and lights toy was turned on she instantly perked up and away she went! Therapy went so smooth and I was so proud of her. So was her PT! Good job Alayna.

Both OT and PT set new goals for Alayna at Comprehensive Rehab this week. We are working on so many things that it is nearly impossible to write all of them in the blog and you actually know what I'm talking about. But here are a few things we are focusing on: trunk rotation and looking side to side, sitting, getting on all fours, laying sideways, going from a sideways position to sitting, stretching her hamstrings, joint compressions, ankle stretching, "righting" position (keep herself upright in the proper position without falling to the side or backwards), reaching for toys, cause and effect, and the list goes on and on. It literally could be my full time job because we could do something every minute of the day.

Feeding

We had a very exciting moment two days ago. I decided to try a Stage 3 baby food with Alayna to see what she would do. It has more pieces of food in it or I guess you could say it is chunky. I gave her the first bite and figured she'd gag on it. So I was ready with the paper towel. But she didn't and actually loved it. She ate her first bites of macaroni and cheese with carrots. Yeah! And then I gave her the sippy cup, which I try and make a habit of at dinner time, and helped her get it in her hands and hold it up. She normally sucks it out and then spits it or just lets it run out the corners of her mouth. But not today! She sucked it and swallowed it continuously without spilling it out. I was amazed and her big brother Drake was so proud of her. He witnessed it with me. We clapped and cheered and of course Alayna eats up all the attention.

More 1p36 Family

I've added some more links to the right hand side of the blog. We've had some new members join our Yahoo support group and they have blogs they share. So, check them out if you get time. They too experience very similar things as we do with Alayna. And you will see how many of the kids have the same characteristics. Again, I can't say enough about the support I get online with these families. They provide me with a wealth of knowledge that is right at my fingertips and I'm so grateful.

Developmental Therapy

Developmental therapy continues 3 times a month through Early Intervention. She comes to our home and works with Alayna. Tomorrow is the first time that I will actually witness it since school is now out. I will update you on how it goes later, but I'm hopeful that Alayna enjoys it because after all she loves to play and loves toys.

Alayna continues to teach me new things every day. She really is our ray of sunshine. We love her so much and enjoy watching her grow and develop each day. She is getting stronger and much more mobile and I just have this feeling that one day very soon she is going to sit up and things are going to really take off!

More Improvements From Miss Alayna!

Alayna is actually showing more signs of enjoying eating! She gets very excited and does well. She eats about 1/2 jar of fruit and 1/2 jar of veggies at dinner time. Last night she really enjoyed "chicken noodle" dinner. Mom despises the smell, but hey, she isn't the one eating it.
We continue to work with the sippy cup at dinner time. Here she has pear juice. Alayna continues to get better about not spitting it out and swallowing the juice instead. I really clap and praise her when she gets it right. I'm trying to break that habit of spitting. It has been challenging for her to get more used to drinking liquids that have not been thickened. Remember we still add some rice to her formula in her bottle and she is so used to controlling that flow. She tends to bite more on the cup than actually suck. Fortunately, this is a Nuby cup and the juice comes out pretty easily for her.
Alayna is becoming tons more mobile. She is rolling more across the room and the other day ended up wedged between her toys and the entertainment center. It was nice to see this! Even Alexis commented the other day on how much Alayna is moving to get her toys and reaching for things. Here she is playing with one of her books.

She is such a unique, delightful little girl. Her smile is so cute.
More toothy smiles. She is still working on a few more teeth, but she is pretty darn close to having a mouth full. I don't think she has many more to go.
We continue to work on particular areas including this shown above. Alayna is doing awesome with holding herself up with locked arms for at least 15 seconds or longer. Now, you've got to catch her in the right mood, but she enjoys viewing the world from a different perspective. I keep telling her that it would be more fun to play sitting up or doing this rather than being on her back all of the time.
We have done this everyday since this photo and I've noticed a huge difference in her ability to keep her balance and hold herself up for a longer amount of time. I've also watched her roll herself on the floor and try to push her head and chest up further than ever before! I love seeing that because I can't wait until she is strong enough to hold her head and chest up and use one arm to get a toy. It's these little accomplishments that keep this such a rewarding job!
Another thing I continue to work on with her is grabbing a toy and pulling it down. This particular one will pull down and then vibrate as it moves back up. She thinks that is funny. At first I was the one doing the pulling and she would hold on tight, but now she has to try to do it. It will help increase her arm strength.

Okay, I had to show you the back of her head and all of the awesome curls! I just love it and can't wait until we are helmetless. And I'm not sure when that will be yet.
Here is how she looks from the side. I've noticed a huge improvement since January when she put it on for the first time. Dana and I are very pleased with her head shape. The only thing keeping us from taking it completely off of her is one small spot in the center of the back of her head. There is still a slight "dent" and we are hoping it pops out and takes shape. I've been measuring it by using the width of my fingers and I've noticed a difference. So we are very hopefull.
Her and Douglas have a very similar shape of head. They aren't the kids with the really round heads. They have a slighter flat shape in the back.
This is back in March. It may not look like a huge difference in the photos, but the center part of the back of her head was still extremely "dented" in.

Alayna continues to make improvements in all areas including eating, mobility, sitting, and overall strength. Summer has begun and I'm now at home with all 4 kids each day. I'm enjoying being able to play with them, work with Alayna, relax (not too much though), keep up with the housework, and spend quality time at home. Our schedule is still very packed with therapy at least 3 times a week in addition to college for kids for two weeks and basketball camp this week. So in the mornings I run a taxi service!

Therapy didn't go very well this week though. Alayna is cutting teeth on the bottom now and it makes therapy miserable for her. I can't say that she enjoys therapy on a normal, happy day so this only adds to the stress of it. The therapists are constantly touching her and trying to get her to do things and she was getting extremely angry. On Monday at Comprehensive Rehab, I had never seen her so mad. She literally cried and tried to bite at her hands for nearly 65 minutes of the 80 minutes of therapy. Thank goodness she is my fourth child. If she were my first I'd probably be in tears too. But my skin seemed to get a little "thicker" with each child. I'm sure those with multiple children can relate to that comment. So, she just had to tough it out. It breaks my heart the most just realizing how these little things we take for granted are tough for Alayna and how much she has to work to figure things out. I did cancel Thursday's therapy because she was in no mood to play or work and to give her a rest. I hope next week goes better because she has 4 therapies scheduled.

Then on Wednesday, she was to go for Speech therapy for the first time at the CTC. I took Douglas along because the other two kids were in camps in the morning. Well, let me just say for the record that he never gets to go to another therapy for a very, very long time. Not only did Alayna only last about 5 minutes and then closed her eyes to go to sleep, Douglas had a meltdown. He didn't like the fact that I told him he couldn't play with the therapy toys. They have to be disinfected each time and I didn't think that was fair for our therapist to have to clean the toys for Douglas. He didn't like the fact that he had to sit by me and play with his Gameboy. So, I decided to reschedule and put everyone out of their misery. I couldn't get out of there fast enough. A couple deep breaths to the van saved all of us. And I had to cancel the Developmental Therapy that afternoon.

Alayna goes next week to speech therapy, so I'll keep you updated. It wasn't a wasted trip to the CTC though because the therapist was using a Spacesaver Highchair from Target that is absolutely perfect for Alayna and is what I've been looking for. I'll be making that purchase soon. It has a 5 point harness, reclines in numerous positions, straps to a chair, is easily transported, and the tray raises up and down too. It will be nice to have something to take into a restaurant or even families houses for her to eat, sit and play in. It is padded nicely and is comfortable and provides quite a bit of support for her trunk and head. I wanted something high enough that she wouldn't get tired holding herself up in and risk falling forward. It is a neat chair. Here is the link if you want to check it out! http://www.target.com/Fisher-Price-Space-Saver-Highchair-Swirls/dp/B000WUB9QM/qid=1213368879/ref=br_1_2/601-4226647-1955326?ie=UTF8&node=13774441&frombrowse=1&rh=&page=1

Alayna's head continues to make shapely progess! (I only wish my body did too, ha,ha) She has been wearing the STARband for about 5 months now and we're just waiting for a particular spot on the back of her head to pop out flat. I hope to get into the orthosist next week, so I'll update you on what he says later. Again, Alayna will appreciate that we made her do this when she gets older! She's been such a good sport about it the entire time.

Alayna is doing great. She continues to provide us joy and a few family members have commented to me how much satisfaction they get from making her laugh and smile or even getting her to calm down when she is upset. Grandma Diana and Auntie Annette have already figured out that singing the Itsy, Bitsy Spider usually does the trick. And both my mom and mother-in-law (Grandma Billie) have commented to me on how good Patti is with Alayna. I had a Pampered Chef party here at my house last week and they witnessed the interaction between Alayna and Patti. Remember, Patti is Alayna's babysitter. We will be forever grateful for Patti and the entire Thomas family. They've accepted Alayna into their home like she is one of the family. And I should also mention that Dana has formed a great, new friendship with Joel.

Just Something To Share

This was posted on our 1p36 Yahoo Support Group website and I thought I'd share it with all of you. As parents supporting each other we share these kind of things often. I think of all the parents of disabled children and marvel at their courage. Disabilites come in all shapes and sizes. I know many parents raising children with Autism and they too are so strong and wonderful. Anyway, here it is and I hope you enjoy reading it.

SOME MOTHERS GET BABIES WITH SOMETHING MORE...

My friend is expecting her first child. People keep asking what she
wants. She
smiles demurely, shakes her head and gives the answer mothers have
given
throughout the ages of time. She says it doesn't matter whether it's
a boy or a
girl. She just wants it to have ten fingers and ten toes. Of course,
that's what
she says. That's what mothers have always said.
Mothers lie.
Truth be told, every mother wants a whole lot more. Every mother
wants a
perfectly healthy baby with a round head, rosebud lips, button nose,
beautiful
eyes and satin skin. Every mother wants a baby so gorgeous that
people will pity
the Gerber baby for being flat-out ugly. Every mother wants a baby
that will
roll over, sit up and take those first steps right on schedule. Every
mother
wants a baby that can see, hear, run, jump and fire neurons by the
billions. She wants a kid that can
smack the ball out of the park and do toe points that are the envy of
the entire
ballet class. Call it greed if you want, but we mothers want what we
want.
Some mothers get babies with something more. Some mothers get babies
with
conditions they can't pronounce, a spine that didn't fuse, a missing
chromosome
or a palette that didn't close. Most of those mothers can remember
the time, the
place, the shoes they were wearing and the color of the walls in the
small,
suffocating room where the doctor uttered the words that took their
breath away.
It felt like recess in the fourth grade when you didn't see the kick
ball coming
and it knocked the wind clean out of you. Some mothers leave the
hospital with a
healthy bundle, then, months, even years later, take him in for a
routine visit,
or schedule her for a well check, and crash head first into a brick
wall as they
bear the brunt of devastating news. It can't be possible! That
doesn't run in our family. Can this really be happening in our
lifetime?
I am a woman who watches the Olympics for the sheer thrill of seeing
finely
sculpted bodies. It's not a lust thing; it's a wondrous thing. The
athletes
appear as specimens without flaw - rippling muscles with nary an
ounce of flab
or fat, virtual powerhouses of strength with lungs and limbs working
in perfect
harmony. Then the athlete walks over to a tote bag, rustles through
the contents
and pulls out an inhaler. As I've told my own kids, be it on the way
to physical
therapy after a third knee surgery, or on a trip home from an echo
cardiogram,
there's no such thing as a perfect body. Everybody will bear
something at some
time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it
will be
unseen, quietly treated with trips to the doctor, medication or
surgery. The
health problems our children have experienced have been minimal and
manageable,
so I watch with keen interest and great admiration the mothers of
children with
serious disabilities, and wonder how they do it. Frankly, sometimes
you mothers
scare me. How you lift that child in and out of a wheelchair 20 times
a day. How
you monitor tests, track medications, regulate diet and serve as the
gatekeeper
to a hundred specialists yammering in your ear. I wonder how you
endure the
praise and the platitudes, well-intentioned souls explaining how God
is at work
when you've occasionally questioned if God is on strike. I even
wonder how you
endure schmaltzy pieces like this one saluting you, painting you as
hero and
saint, when you know you're ordinary. You snap, you bark, you bite.
You didn't
volunteer for this. You didn't jump up and down in the motherhood
line yelling,
"Choose me, God! Choose me! I've got what it takes."
You're a woman who doesn't have time to step back and put things in
perspective,
so, please, let me do it for you. From where I sit, you're way ahead
of the
pack. You've developed the strength of a draft horse while holding
onto the
delicacy of a daffodil. You have a heart that melts like chocolate in
a glove box in July, carefully
counter-balanced against the stubbornness of an Ozark mule. You can
be warm and
tender one minute, and when circumstances require intense and
aggressive the
next. You are the mother, advocate and protector of a child with a
disability.
You're a neighbor, a friend, a stranger I pass at the mall. You're
the woman I
sit next to at church, my cousin and my sister-in-law. You're a woman
who wanted
ten fingers and ten toes, and got something more.
You're a wonder.

Lori Borgman is a newspaper columnist and author. You can find her
at:
www.loriborgman. comCaroline Kupstas Daley

Lots To Catch Up On & A Heartfelt Message

Alayna can tolerate sitting in the bumbo seat for 10-15 minutes easily. Okay, as long as she's in a good mood! Teething is interfering with many of our fun activities and I can't wait until they are all finally in.
She loves watching the lights flash on the toy gym. It keeps her focused for awhile and forces her to control her head and neck.
Now she's pooped and crashed on the floor!
Alayna is really interested in people's faces. If you get close enough, she'll touch you. And you may just get lucky enough to get a wet, slobbery hand! The kids love that (just kidding)! Douglas loves talking to his little sister and loves getting a reaction out of her.
Alayna loves Lexi! She is like her little mommy and I think Alayna knows that and feels so comfortable with her. Again, Lexi loves to be smiled back at too and loves to make her giggle.

Proud big sister Alexis with Alayna.
Our two beautiful girls! We are so proud of all of our kids. The truly bring joy to our lives.
I look at this picture and think "what is different?" It's Alayna helmetless. I can't wait until we can finally take that off! But not yet.
Smiley Alayna. We've been battling a watery, red eye for about 3 weeks now. We've tried eye and ear drops, but I really think it is associated with her teething. Some days it is good and some it is worse.
I'm sad to report that the swing is "slowing" down a little. Seriously, Alayna is getting a bit big for it and the swing itself is slower due to that. But we will use it until it works no longer!!! She loves the movement. She sleeps in it, plays in it, smiles in it, kicks her legs in it, and looks around in it.

Wow! This is the longest span of time for a new post in a long time. This time of year is crazy for our household because of all the kids activities (softball and baseball) and me trying to wrap up the end of the school year at work. I've had tons of papers to grade and just something to do every night. Literally, I don't sit down until I go to bed. There is always dinner to fix, dishes to be done, laundry to do, school work to finish, bottles to wash, bags to pack, and oh my the list goes on and on. But, the kids have 2 more days of school and I have an institute day and we are done for the summer! I fuel on the fact that I can throw away our daily "schedule" for a few months.

However, I do have to share that as I'm typing I glanced at our June calendar on the refrigerator and it has something written on it every day of the month. I'm a bit nervous because I've got therapy for Alayna 3 times a week to get to and I've got to find someone to watch the other 3 kids on these days. I'd be insane to try and take them with. Not to mention, Lexi starts the summer off with two weeks of College for Kids and Drake starts off with one week of basketball camp. So, our mornings for the next two weeks will still be earlier than what I'd like. This means I have to get up and shower and put on make-up which I could pass up all together. Oh well!

Alayna had her 1 year review with Early Intervention about a week ago. Overall, it went fine. It's tough to swallow her percentage of developmental delay when it is spelled out in black and white on paper. Prior to discussing anything we were given copies of the evaluations and given time to read them. I found it tough to read and I had to hold back the tears. The great thing is that she is progressing at a steady pace and in the progression that they like to see. She is going in "sequence" so to speak and making gains. All of the therapists (PT, OT, DT and Speech) made an evaluation and scored her using certain developmental tests/checklists. Some skills were difficult to score because she may overlap in the age ranges for that particular skill. The PT evaluation put her in about the 5 month range for development. The speech therapist put her at about a 6-7 month level for speech. In general, Dana and I both feel that she is at about a 6 month level and doing things most 6 month olds do, minus the babbling and cooing.

Early Intervention approved her having therapy once a week. Remember, before she was only going 2 times a month. So, PT will continue to be one time every other week and speech and OT will alternate the other two weeks. I'm glad to have Alayna going to the Children's Therapy Center once a week. She seems to be at a developmental burst right now and her interest in play and toys has increased. We need to take full advantage of that open window of opportunity to expand her skills. She continues to go to Comprehensive Rehab two times a week as well. Our weeks will be full of 3 days of therapy sessions. Again, I thank God for Patti, Alayna's babysitter, and Grandpa Denny for helping with this all through the school year. And I may be calling on Patti a bit this summer - hope that's okay Patti!

At this time we are battling the teeth. I can't believe how Alayna has seemed to get a bunch of teeth at one time. She is currently working on the molars on the top and about 4 more on the bottom. It stinks! Fussiness and not wanting to eat are the issues we've been faced with. Not eating can't be an option for her. She doesn't eat that much on a good day! We've befriended Tylenol for the last week and Baby Orajel. Also, with her teething she usually gets a watery, yucky eye. We visited the pediatrician about a week ago and did eye and ear drops for about 10 days. It has gotten better. It could be a result of cutting teeth or be a clogged tear duct. We'll keep our eye on it!

Alayna is as cute as a button. We love her and she is so lovable right back. Now, there are times that she absolutely refuses to be held and fusses so badly that there isn't anything you can do. Both Grandpa Denny and Patti have both experienced that and it isn't fun. Alayna has her moments too when she fights her sleep. I hope after her teeth come in we see Alayna in a better mood for most of the day.

Alayna is really beginning to grab and hold her bottle while you feed her. She gets pretty proud when she holds it all by herself. She is most intrigued by taking it out and putting it back in rather than drink it. She also likes to bite down on the nipple and pull it out of her mouth quickly to make a "popping" noise. And then she'll look at you and smile. She's funny!

I want to say thank you again to all of our family and friends who continue to shower us with support. It comes in all forms from phone calls, emails, cards, people asking how Alayna is, and of course, from you reading her blog. I mean it from the bottom of my heart when I say that we couldn't do this without you. We are 16 months into our journey and look forward to the many, many years ahead of us. (Alayna turned 16 months on 5-29)

My good days far out number my bad days. But this weekend has been exceptionally difficult. As most of you know our oldest daughter, Alexis, plays ASA softball and enjoys it very much. I enjoy both watching her play and socializing with the other parents. I've missed more games than I've actually seen this year. They are always played on Tuesday nights and Saturdays and Sundays and this weekend she played 7 games. I witnessed only one of them while dealing with a little one cutting teeth and hating the sunlight in her eyes. It was hard to enjoy the game. I get sad when I have to get the "updates" through a text message. So, I'm battling with the struggle of what to do. I have one side that so wants to support my oldest daughter and be there for her and the other side saying to just stay home because it makes things tons easier on my younger one (and me too).

It's difficult to express the ups and downs of raising a child with a disability. What I'm battling the most right now is the fact that I have a 16 month old that can only do most things a 6 month old can do. Thus, this limits our "freedom" in a way and makes outings a bit more challenging. For example, an activity like planting flowers outside would be much easier if she could sit up on her own or even tolerate the sun. Everything has to have a plan and I'm learning to adjust to that.

You know when you raise a "typical" developing child, things progress at a steady pace and things just get easier, pretty quickly. And you get just the right amount or "taste" of each little phase they go through and then it is off to a new phase. Well, I feel like I've been raising a baby forever and I get frustrated because I want to know when things are going to get easier. I'm ready to move on to a different phase. Don't get me wrong, I still have all the faith in the world that God is with us each step of the way. But I'm human and I have every right to cry and shed a tear now and then. And some days it is much easier to do than on others. No one said it would be easy and it definitely isn't at times.

I was doing some searching on the web last night and came across a book titled "More Than A Mom." I plan on purchasing that soon and I'll let you know how it reads. It has wonderful reviews and at this point I'm "thirsty" for any knowledge of what other moms raising a disabled child go through too. It can feel like a lonely place sometimes. So, I urge all of you to support anyone you know who may be going through the same thing. Behind the smile there can still be a little heart ache.

May the Lord lift your spirit, encourage your heart, build your faith, and brighten your day.

Climbing That Mountain Together!

Alayna is all smiles lately! Okay, maybe at times she isn't. This little outfit was from the Whisman family.
Sticking my tongue out! And yes, we are an Iowa Hawkeye family if you were wondering.

Just a swinging! She loves this swing. I don't want her to grow out of it.
She is cutting more teeth and always has a hand or fingers in her mouth.
This little outfit is from Grandma Diana and Lexi gave her the shoes for Christmas. They finally fit (size 2)
Most of the time Douglas can get Alayna to smile. She loves watching him. I think it's because he is still little and just silly. He says he wants her as a tractor partner and someday he's going to be big enough to give her a ride on the tractor. I believe him!

Eating an orange for the first time. Made her pucker a little!
She sucked that orange down to nothing. She loved it.
Lexi helps feed her a strawberry for the first time. She liked it too! I was just worried about being allergic, but she was fine.
She liked the strawberry, it was just more messy.
I have to post of picture of Lexi in her uniform. I'm so proud of her. Yesterday, Rocket Fire played a team that gave them a challenge. They were down by 1 run and it was the last "at-bat." Lexi was up and her team had 2 outs. She got two strikes. Uh, oh! But, she hit a double and knocked two of her teammates in from 2nd and 3rd and won the game. Way to go Lexi and way to go Rocket Fire!

Since Alayna has been off of phenobarbital, she has been showing her "true colors." She is much more emotional and expressive about her feelings. Which is a wonderful thing. When she's happy you know it and her smile still melts my heart. However, when she isn't happy you'll definitely know it too. Lately, it has been challenging to get her settled during some of her moments of anger, tiredness, or maybe teething pain. Sometimes there is absolutely nothing we can do to make her happy and it is nearly impossible to figure out what it bothering her. The best intervention is still the swing. It's tough though when we aren't home. So, I have been known to resort to a sucker. I'm going to buy a bag of dum-dums at Walmart the next visit. It's all about whatever works! The other night on the way home from Lexi's tumbling Alayna was crying and had been nearly the entire time. I caught myself with my hands over my ears a few times and I'm not joking. It was so cute because Douglas turned to her and said in the calmest voice, "Alayna, use your words!" He wanted her to stop crying so badly and just tell us what was wrong. Someday she will.

I'm still learning what the best accommodations are for her at the ball diamonds. She hasn't been liking the stroller lately and would rather just lay on a blanket on the grass. Yesterday, I used a huge golf umbrella to provide shade and she went to sleep. I actually got to watch most of one entire game with only a few interruptions from the boys! I think next I'm going to take the Pack-n-Play so she can lay out flat and put a blanket over the top. We'll see how that goes. It's tough sometimes, knowing that with a typical developing child I could just take her for a short walk, bribe her with some cheerios or fruit puffs and give her a sippy cup as forms of distraction. I would have more options to keep her busy. I just want to be able to watch my oldest daughter play her softball games. I'm human, I'm allowed to feel this way, and yes, I think it is normal to have these little selfish thoughts sneak up on me.

Alayna is moving around the floor more and also in her crib. She somehow rolls and scootches all different ways. She has also been sleeping more on her stomach/side instead of flat on her back. Alayna continues to grab at toys and shows more interest in them everyday. Her hands and arms are becoming more cooperative together. Dana was playing with her the other day and he tickled his nose to hers. She reached up and grabbed his face with both hands. Of course, Daddy melted and she once again captured his heart. It's these little things that mean so much to us. They are things we never would have thought about with our other 3 children because they just happened.

This Wednesday, Alayna has her year evaluation through Early Intervention. Her PT, developmental therapist, and speech therapist will all be doing an assessment and writing reports. We have a meeting scheduled for late afternoon and her therapists, Early Intervention coordinator, and Dana and I will be present. It's like an IEP meeting if you are familiar with that term. We'll review what goals Alayna has met and set new ones. Alayna continues to go to Comprehensive Rehab two time a week, but that isn't connected to Early Intervention. That is just additional therapy that we decided she needed on our own. I'm going to request for more therapy through EI and hopefully they'll approve it. I'd like to have Alayna going to the Children's Therapy Center at least once a week. I believe she needs it and again, I'm one of those people who thinks that there isn't such a thing as "too much therapy."

Alayna has really been enjoying fruit in her mesh feeder. We try to use it about 3-4 times a week. She has had peaches, bananas, oranges, strawberries, and mixed fruit in it and eats each one. Now, when I say "eat" I mean she does tons of sucking on it. Some of the fruit comes out through the holes, but most of it stays inside the bag to prevent choking. And she continues to eat about 1/3-1/2 a jar of stage 2 baby foods in the evening. There are nights though that we skip this all together because of either the mood she is in, timing, or that she hasn't drank her formula completely. It doesn't take much to fill her up. We've switched formulas to the Members Mark brand sold at Sam's stores. It is much cheaper and so far she is doing fine on it.

Sometimes things happen in our lives that makes us challenge our faith and create doubt. Trust me, with Alayna, this has happened. However, God tells us that he is here for us and will never fail us. I'm a believer and I continually pray to God to give me strength to get through each day. One day at a time. He sets mountains before us to climb. I am climbing this mountain and there's no stopping me. And so is Alayna. We will have our rough spots and our set backs, but someday we are going to reach the top together and shout from the peak. You'll see!

15 Month Accomplishments

Having fun eating and drinking!


I'm beginning to show interest in holding my cup. I just drop it and don't mean to.
Alayna loves this singing duck from Hallmark. She got it for Easter and she cracks up at it!
That silly, singing duck! It even moves its mouth and flaps its wings.

This is one of Alayna's favorite books. It has Disney princess buttons on it and plays music. It makes her smile too.
More practice with the cup. It's a Nuby cup from Walmart and she seems to be taking to it because of its soft spout similar to a bottle nipple.

Grandma Billie brought us some bean bags and this is one of Alayna's favorite places to relax!
Chillin' in the bean bag chair. She is beginning to pay more attention to the TV. I want to get some Signing Time videos soon for her to begin watching. We continue to try and get Alayna to bear weight on her legs. She can do it, but it only lasts seconds. I just don't think it has clicked that legs are supposed to be used to stand on.
Asleep in the bean bag. She is such a sweet little girl.

Alayna continues to make me smile everyday. She turned 15 months old this past Monday and I'd like to share some of the things she is doing. Alayna has been giggling much more. It is definitely becoming an easier task to get her to laugh. She has been taking phenobarbital since November when she had 2 seizures while in the hospital for RSV. Okay, I admit that I'm not a doctor, but I've weaned her off of it for over a week now and I've seen only positive side effects! I probably shouldn't have done that without consulting a physician, but I did anyway and her pediatrician was fine with that. So as of right now, the only medication we are using is Myralax in her bottles.

Alayna's current weight is 19 lbs 5 oz (with a diaper on). The nurse told me it weighs 5 oz, so I guess she's right at 19 lbs. She is 29 1/2 inches long. I didn't even bother asking where she fell on the "typical" growth charts because it is obvious she is on the lower end. However, Dr. Neptune was very happy with her growth and that she is eating and drinking. Her daily eating schedule right now is four 5-6 oz bottles of formula with 2 tablespoons of rice added to make it thicker and about 1/3 of a jar of veggies and fruit in the evening. So on average she is taking in about 20-24 oz of fluid each day along with some baby food.

I'm working hard at introducing the sippy cup. Upon recommendation by other 1p36 parents, I've bought the Nuby cup from Walmart because its spout is so similar to a bottle nipple. Alayna is drinking a juice/water combination out of it. She is doing well, however, she has figured out how to spit it back out again and not swallow all of it. The bib is usually drenched and juice is floating in the catch pocket! That is the frustrating part of it. I just wish she'd suck it and swallow all of it. But we'll get there. I've also seen a much better interest in the mesh self-feeder that I've tried to use before. The other night she ate about a 1/4 of a banana out of the mesh feeder. She seemed to enjoy it too and actually held onto the handle. She would drop it of course, just like the sippy cup, but we continue to work on that as well. Dr. Neptune suggested to introduce different fruits in it like pears, mangos, oranges, and anything else soft. I will let you know how that goes. And I might get brave here soon and use a food processor to try some table food like pasta or veggies.

Alayna is physically getting stronger. It is a slow process, but I've seen big improvements. Alayna sits the best when you assist her from the back side. I love to watch her sit and I try and face her to me. But, I have the best luck with her posture and sitting for longer amounts of time if I sit her in front of me, facing out, and use my leg as a support right in the lower area of her back. She loves toys that have sounds and lights and ones that move. Again, she sits best if she has something to look at that occupies her attention for awhile. The yellow duck in the above pictures and the sounds and lights toy gym are still the number one favorites to use. She isn't able to sit completely on her own just yet. She has no defensive reflexes and she tends to fall forward onto her face (thank goodness the helmet catches her fall) or backwards onto her head. We are trying to hard to put her hands down in front of her for support. One of the great things she is now doing is if she falls forward all the way, she will use her arms and all of her strength to push herself up again. YEAH Alayna!

Alayna continues to roll more each day. She is not staying in one place on the blanket anymore! She is finding out that she can roll in other directions and kick her legs to move around the living room floor and her crib. So, we've begun to spread the toys out a little bit further and try to get her to get them. Alayna has always kicked her legs since very early on as a self-stimulation behavior. She continues to do that. I'll hear her kicking and slamming her legs on her crib mattress in the middle of the night and when I go check on her, she still has her eyes closed. It's a way to soothe herself. Alayna still enjoys the baby swing. I dread the day she grows out of it. I think another few inches her toes will touch the ground! She loves the movement. It and the bean bag are the two favorite places right now to relax and sit.

I've been a little concerned about some bumps that Alayna had developed on the bottom of her legs and a few on her cheeks ever since she had the RSV. I've asked her pediatrician about them multiple times and he has made a few recommendations of what I could try. I most recently bought Eucerin Plus and it says it is clinically proven to relieve skin bumps often found on the upper arms and legs. These bumps are called "keratosis pilaris". After looking it up online, many people have them. Actually, some of my family members and friends have told me that they had them. They don't bother Alayna, but I'm willing to try something that will clear them up. The Eucerin just didn't seem like it was doing anything, so her pediatrician gave me some samples of Differin which is a topical gel used to treat acne. Sometimes it can cause more irritation, so I will watch her legs and discontinue the use if that happens. We'll see how it goes!

Alayna received two immunizations at her appointment. This is going to sound weird, or maybe even cruel to some of you parents, but I was so excited to hear her cry! Yes, she definitely felt the first poke and immediately stopped sucking her pacifier and started to scream. And then after poke number two, the pacifier came out and she was mad. If she was capable of producing tears, they would've been flowing like a river. I was so excited to see her so upset and realize that she felt that pain. It is known that 1p36 kids have a high tolerance to pain and sometimes don't have that ability to tell you what they are feeling. Our little friend, Whitney, even had a broken arm and didn't express any discomfort. During Alayna's previous vaccinations, she would fuss a little bit and maybe do a little squirming, but nothing compared to yesterday! She was crying so hard that she created an abundant amount of saliva in her mouth and throat and I thought she was going to choke on it. As I left the office smiling and pleased, Alayna cried the entire way to the van. It was a neat moment!

There is one more thing I want to share with you. Alayna loves movement and loves louder sounds and often enjoys being startled. Well, to get her to laugh or giggle all Dana or I has to do is yell "Douglas, NO!" Douglas is little 4 year old brother and he gets reprimanded often by us or hollered at by his older brother or sister. Douglas is a frequently spoken name in our house and I think Alayna recognizes it already. She's so funny. She loves to hear "NO." Okay, she is the little angel and she has already learned to take advantage of the moments she isn't the one in trouble!

I've added a few new links to some of our 1p36 friends blogs. They do a wonderful job of capturing these moments with their special little ones. Check them out! It is all about support and when we know we aren't alone in this endeavor, it provides us more strength to keep going. I love the title of Lily's blog, "Godgaveusyou.blogspot.com". Keep the faith.