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)