A Very Busy Week!

Alayna's cousins, Audrey and Will, went to Disney World over Easter and brought back her first pair of Mickey ears!
Aren't you going to smile Alayna?
Alayna's hair continues to grow and it is crazy! This is what it looks like just out of the tub with no bow or helmet. Hey wild thing!!
I'm sleepy after getting ready for my sister and brother's big birthday party for this evening. Oh my!

On the go all of the time. She lives in the car seat.
Getting ready for bed.
Me and my big brother Drake! He loves me tons.

Happy Birthday to Douglas on March 18th (4 years), Alexis on March 30th (10 years), and Drake on April 10th (8 years)!!! It is hard to believe how big they all are getting.

The past week has been very busy for us. I'll try to give you an update. Besides celebrating three birthdays, Alayna came down with pink eye and clogged tubes. She just wasn't eating her bottles very well. She'd spit the formula out and would literally soak one burp cloth each feeding. She has this unique way of "spraying" it out. I think she may become a professional gleeker someday! I thought she had an ear infection. So, I started putting the drops in her ears also hoping that would clear up her "goopy" eye. It got better for about a day and we then decided to run her into the pediatrician. Both of her tubes were clogged with wax. The drops weren't even making it through. Fortunately, she didn't have an ear infection, but the wax must have been causing her some discomfort or pressure. We started eye drops for pink eye too. How she got that is a mystery. All I can say is that she rubs her eyes a lot.

Alayna has made the official move out of the carrier to the rear-facing car seat. She doesn't mind it at all, but it's been tough for us who have to carry her everywhere. I find it the most difficult when I have to put a jacket on her, me and Douglas and hold her at the same time. Today we are venturing out to Walmart. I hate to say this, but I'm going to resort in using one of those carts with a carrier on the top. I promise to take a wipe and disinfect it first okay! We are all still working hard on getting her to sit up. Patti took her to therapy this week and on Thursday she sat two times for 9 seconds. If you count it, that's a long time for her! Yeah Alayna, we are proud of you.

We are doing the "airplane" more now to strengthen her neck, legs, and back. That was a suggestion by her therapist. She likes to fly towards her brothers. They make her laugh. Alayna still enjoys her swing so much. What am I going to do when she outgrows it? We'll have to move on to something else. By that time hopefully we can go outside and prop her up in the baby swing on the swing set. Alayna continues to roll back and forth. She can change her position on the floor pretty well. I'll put her down under the sounds and lights and before you know it she is out from under it and laying a totally different way. Last night was the first night she woke me up at 4:30 am fussing because her leg was stuck out the side of the slats on her crib. I'm glad to see her mobility is improving.

A developmental therapist through Early Intervention should be calling me soon to set up a time to come and visit Alayna two times a month. She is going to show us and Patti some techniques on how to "play" with Alayna. Alayna is definitely more interested in toys now and will reach for things. I was so happy last night because she was sitting in her high chair and playing with a musical toy. Every time she hits the button it plays music and then stops. She'd hit it again and it would play and stop. She got to giggling because she made the connection that she was controlling that and doing it! It was awesome to see her finally understand the consequence of that action. She did it for probably 10-15 times! Yeah, Alayna!

Alayna continues to play peek-a-boo with the blanket. She enjoys playing the "Itsy Bitsy Spider" and reacts with smiles! She loves her baths. We are working on finding her feet. I think she is getting it slowly that those things are hers. She finds it funny when I make her grab them. Her head is looking so great. I plan to take her in this week for a check-up, so I'll let you know what her doctor says. In May, we will follow up with neurology in Iowa City, so that appointment needs to be made. I hope we can take her off of the phenobarb. In my heart I know she is seizure free. And the yearly 1p36 Conference looks like it is going to be in Boston, MA. We just aren't sure when yet. I hope we can make it.

I will try and post again this week. I need to take some more photos and catch her smiling.

Happy Easter

Getting ready for church and of course the girls are cooperating, Douglas is not sure what is going on, and Drake throws in the eyeballs. It is cute of the girls smiling!
So, we tried it again and again. But Alayna would rather eat her fingers like she does 90% of the day.
The family at Easter Brunch. We enjoyed that so much. No one had to cook or clean up!!
Alayna with mommy...we enjoyed this Easter so much more than her first one last year at the hospital. I'm so thankful she is healthy. I hope she stays that way.
Grandma holds Alayna. We ate brunch at this reception hall and they had a disco ball on the ceiling. It wasn't on, but it sure caught Alayna's eye and mesmerized her for awhile.

This is Alayna's new Jumperoo from Grandma Billie and Grandpa Richard for Christmas. We've been a little hesitant to put her in it, but after seeking advice from my 1p36 parent experts, we decided to use it for a few minutes a day. She seems to be enjoying it and if it will help strengthen her legs we are all for it!

I'm trying to practice more with her sitting on the couch. First, because it is soft and she needs to get used to it and second because she just seems to like it a lot. Maybe because it is just different and she feels like a big girl. See how she put her hand down on her right side? This is the first time I've seen her do this. She started to lean and she tried to catch herself. Yeah!
I mentioned to her therapist today that when she sits on the couch she takes her arms and flaps them up and down and hits the couch. I also mentioned how she put her arm out. She informed me that those two instincts usually develop together. Maybe we are getting ready to hit another milestone?!

Patti working with Alayna! We can't describe in words how grateful we are to have her.
This is Patti, Alayna's babysitter and personal trainer. Alayna loves her!
I'm sitting on the couch again and loving it! I fall over sometimes, but I'm finding my arms! Do you like my hip, new outifit? I've got to be stylish like Lexi!
Here I am banging my arms up and down on the couch. And I'm getting ready to go to therapy again. I've got it 3 times this week...ugh...I get tired! They make me work very hard.
Alayna, you are such a sweetie. We love you!!! We love the crazy hair too.

I hope all of you had a blessed Easter holiday. Our church service was wonderful, uplifting, and truly inspirational. Our pastor delivered the Easter message that is pretty simple: "we live because He lives and we will live for eternity." That thought provides me with a sense of calmness and peace. Another part of the message that sticks in my mind is the fact that God has a purpose for each and every one of us. We all have a purpose here on the Earth and he doesn't take us until that purpose is fulfilled. I know that is true. It just means more today than it might have, say 10 years ago. Because of Alayna of course. She has been sent to us for a reason and she has a great purpose. As a mom, wife, daughter, sister, teacher and a person, I openly commit myself to the Lord and will try to walk in his footsteps. That is what we all should strive to do.

Alayna continues to do well. Just this week she seems to be wanting to grab toys more and play with them. So, one of our PT's is going to contact Early Intervention and see if we could get a developmental therapist to come to our home or Patti's. I'm all for any additional services! We continue to work on the sitting. We are constantly pulling her up from a laying down position and trying to get her to use her own muscles. You can definitely tell when she does this on her own. It can be a challenge to keep her looking up at us. She likes to "dive downward" and put her fingers in her mouth. Then she looses all postural position. We are working/stretching her hips and legs and feet because we want full range of motion and she does tend to lay with her legs apart and her feet out. We are making her get her hands fully extended and flat on the ground and trying to get her to bear some weight on them while kneeling. That usually takes two people!

I know there are other things we do too, but it is difficult to list them all. They just get worked into everyday routine and we just do them every so often. I tried to get her to take a bite of a Ritz cracker tonight, but that didn't go so well. I'd love to try and introduce new things to her, but I'm not sure she is ready. I'm going to seek advice from the 1p36 parents and see if they have suggestions. Today at therapy, her speech therapist gave me a rubber type of brush to rub on the inside of her mouth, cheeks and tongue to stimulate her mouth and try and get her to recognize that her tongue can go side to side. Many babies are so used to the bottle that they thing their tongues can only go to the front and back and they need to make that new connection.

The 1p36 support group that we are members of is trying to organize this year's conference. Remember last year we went to Jacksonville, Florida and had the opportunity to meet some wonderful families and children. We are planning on going again this year and look forward to seeing familiar faces and meeting new ones. The parents are the experts and they have a vast knowledge base that is absolutely priceless. I can't begin to describe the compassion and support they provide to everyone in the group. It really is another part of our family. We all share the same connection and it feels good to know that you aren't in this alone and that someone else out there is probably going through the same thing you are. It could be illness, sleepless nights, medication concerns, or just questions on what to do next! I can't wait for a conference location to be determined and fill all of you in on the details.

There was a new article on 1p36 recently published by Dr. Shaffer and another doctor from Italy. Here is the link http://www.genetests.org/servlet/access?id=&key=&fcn=y&fw=Z-oa&filename=/profiles/del1p36/index.html It has some fascinating things in it, but a lot of scientific terminolgy as well. But I encourage you to take a look. I'm just thankful that Dr. Shaffer is so adament about researching these kids. Good has to come out of this and I think with her research and expertise, more children will be diagnosed earlier and get the services they need to progress.

We're Back and On Spring Break!

Alayna loves hand-me-downs from Lexi! This is one of her old outfits. I'm thrilled that Annette and I kept a lot of Audrey's and Lexi's clothes. It helps tons.
Alayna's babysitter, Patti, takes her to therapy 2 times a week. The therapists have set some new goals and sitting up is one of the major ones! So, we will be practicing tons more. Here, Alayna is wedged in the corner of our coach and smiling.
OOPS, I'm falling to the one side! And I just don't have that instinct to put my hand down to catch myself. Patti, Alayna's therapists, and myself have really recognized lately how much Alayna puts trust in other people.
And now I'm falling to the other side. Alayna over compensates frequently and we are all working on strengthening her upper trunk muscles. She'll get there! At least she smiles through most of it....I can't say all of it. And I know Patti knows what I mean. Sometimes Alayna can get down right ticked off.

Alayna gives Douglas a little cuddle on his 4th birthday! She wasn't too sure what was going on and didn't care for having Douglas hold her.
If Alayna can get her pacifier and/or blankie wedged just right in her mouth, she likes to chew on them. She has 6 teeth on the top and 4 on the bottom. I think they are still bothering her a little, but for the most part, teething seems to be at a halt for now. Yeah!
What a cute face! She puts a smile on our faces on any day...rain or shine.
Okay, as you can see she is growing and getting close to being too big for the carrier. Her feet are hanging over a little and the straps are too short. She's squished! Plus, my back hurts and she is getting heavy to carry that way. They are awkward to carry no matter how big the child is. So, over break, I plan on getting the other car seats ready to go and we'll make the transition. I just plan on keeping the stroller in the van and maybe the carrier in case we go in somewhere. I may try to find a feeding seat at Toys R Us like some of the other 1p36 parents use. It's tough right now because she isn't able to sit up (yet!).

She has such a sweet little face and it reminds me of many of the 1p36 children we met in Florida last November. They all share a "similar" look.
She is back to loving the pacifier which is good because she still prefers to have her hands and fingers in her mouth non-stop. Her index finger on the one hand is slightly caloused.
Oh, that feels so good to have my helmet off! Alayna enjoys that part of the night and decided to rub her own head. And of course, she is holding the infamous green frog!
More grins and smiles.
Happy St. Patrick's Day everyone! She has this look on her face like she's trying to say "What in the heck are you doing mom?" Taking this picture did make us all laugh.

Glad to be back everyone! I missed blogging. We had some problems and had to bring the new computer upstairs and switch things around. It's much faster and just newer. It's too bad how fast computers are out of date so to speak. The other one wasn't that old either.

Anyway, we are officially on Spring Break!!! Oh, you don't know how ready I was. It's tough and wearing getting up everyday for work, getting all of the kids ready, making sure all homework is done and bags are packed, rushing around, and praying to not be late! Ya, right. Five days in a row is tops for me. I couldn't do it more than that. And let me just say that my students were needing a break from school too. And the exciting thing is we go back on March 31st and only have 1 more quarter to go. Unfortunately, it is a long, long quarter. But Spring is here and we are looking forward to it. And I'll just add that I'm ready for summer.

I do have to pray that this Easter break treats us a little nicer than last year's. I'll refresh your memory by telling you that Douglas had the rotovirus for over a week and spent an evening in the Trinity emergency room. And the following night, Alayna was admitted in Peoria. We spent 5 nights there, including Easter. That was right before we got her diagnosis. I look back though and she has come such a long way and is far from "failure to thrive" (the label they gave her last year at this time). This Easter is extra special and is really her "FIRST"!!

With spring, softball and baseball practices continue for Alexis and Drake and will likely move outside very soon. I hope Alayna and I get to go watch a few this year. Douglas is actually the handful if you can imagine that! And I'm sure heading to the kids games will be easier than last year. I'm also thankful to have such good "mom-friends" of Lexi's team members willing to help with Alayna. So, if any of you are reading this, oh you know I'll be asking for some relief...get ready. If you can believe it, Alexis has her first tournament in about 3 weeks in Burlington, Iowa. Fun City...here we come!

We don't have any huge plans over our week long break, but lots of little things to keep us busy. I plan to spring clean the house with Lexi. It is so nice how she is getting old enough to help me and it actually be help. When they are little they say they want to help, but it really never turned out that way. I'm sure all moms reading this can relate. I hope the weather cooperates a little for us and we may take a trip to Weed Park to play on the equipment. I hope to get the kids photos taken at JCPenney's for their birthday's. We have a birthday party planned for next weekend because Douglas turned 4, Alexis turns 10 and Drake will be 8! Wow, how time flies by so quickly. On Saturday, we plan to go to the Easter egg hunt in Andalusia and to Edgewood Baptist Church for Easter Sunday service. Then all 4 of our parents are going with us to brunch. It should be very nice. Hopefully, for the rest of the week the kids and I can just hang out together and have some fun knowing that we don't have to wake up with an alarm and we can wear our PJ's all day if we want to. Okay, maybe not the days Alayna has therapy, but all the other ones.

As usual, Alayna is progressing well. She continues to be the breath of fresh air that I so often need. Her carefree manner calms me and her smile melts my heart. We wish each of you a blessed Easter. I'll be sharing more pictures later. May God bless all of you as he has blessed us.

Sorry For No Post Lately

We are having some major computer problems and internet connection issues. That's why I can't post. It boots me out and disconnects itself in just a few minutes time.

Finally, Time For Another Update!

As you can see from many of these pictures, Alayna has accomplished the milestone of clasping her hands! She enjoys playing with her fingers, putting them in her mouth, and holding her hands together. One thing that we battle is the hair in the eyes when she has her helmet on. Alayna always wears a bow on the top that helps, but her hair does wiggle its way into her eyes. It's frustrating at times to us, but it doesn't bother her much.
I've seen such a difference in Alayna's attention and ability to focus on something. She is so much more alert lately and really responds well to sounds. She absolutely loves to watch toys that light up and loves the ones that play music. You can get her to turn her head toward the sound so easily and I'm so glad. The tubes have made such a difference.
Alayna still uses her swing nearly everyday. She loves it and it is a life-saver not only to keep her occupied, but to give her another activity to do. Alayna still sits in the bouncy seat and bumbo seat and gets tons of floor time, but she gets bored just like other kids!

If Alayna isn't clasping her hands or playing with a toy, she has them in her mouth. And she is still working on those top teeth. She sucks on her fingers so much that it looks like her left index finger is a bit swollen. She prefers her left hand. I've bought her numerous kinds of teething rings, small ones, big ones, hard ones, soft ones, one for the refrigerator, but the problem continues to be that she can't hold on to them for very long and she tosses it over the side of the bouncy seat. I'm going to get one of those vibration teethers at Walmart this weekend. The boys had one of these and Alayna's therapists tried it last week. She seemed to like it. I guess we'll just have to help her out and hold it!

I'm sorry for all of the head photos here, but I'm so excited about how the helmet is going. And I was trying to get the best angle to show all of you. Alayna's head shape continues to change. She has been wearing it for about 7 1/2 weeks. You can see how the back of her head is starting to round itself out. She's even getting a bit of the "ridge" at the bottom. I think the most noticeable change is on the sides of her head and the top corners of the back of her head. She isn't as wide.
Her hair continues to grow...and like most babies, most of it comes from the center of her head. Right now we do a bow or she'd have a major comb over.
What are we doing mom and dad??

Alayna and her cotton balls in the ears to keep the water out. That is the biggest pain in the tush right now! Her ears are so small it's hard to get them to stay in. And I always get them wet because I've got to rinse her hair out. Oh, one more thing to share....my boys would occasionally go #2 in the tub, but Alayna takes the cake on this one. It's nearly every time. UGH. It must relax her enough I guess. At least she isn't constipated!!??? LOL!
I just think her head is starting to look so good! I took her for a helmet check two days ago and he said with the way it is going he'd be surprised if she wore it much past June! I hope it is off before the really hot weather.

She is starting to really sit up good with support. Her head does bob up and down some of the time and she is starting to throw herself backwards, but when she pays attention and tries, she does well! We are really working with trying to keep the hands out of the mouth and look up while she sits. She likes to keep her hands in the mouth and this forces her to put her head down.


Alayna continues to make progress. Therapy is going well and she brings a smile to our faces everyday. The kids continue to hog over her and tell her how cute she is. Drake remains the biggest guardian angel of all of them. And they are so good about washing their hands and not touching Alayna's hands. They have been told over and over how important it is because she has her hands in her mouth nonstop. They love to make her laugh and watch her smile. You can literally see them light up when they accomplish this task. It's neat to watch them.

I wanted to share how much I enjoy carrying Alayna up the stairs and around the house with one arm. I can pick her up and not have to necessarily hold my other arm behind her to guard her from falling backwards. Her strength is improving and that is one example of how I can tell. It's such a small thing that is so huge for us! I'm still looking forward to the day she can sit on her own and play with her toys. And I can't wait for the day I can give her a bath and use the tub ring instead of the baby tub. I might try that sometime soon, she may just surprise me!

Another good thing is that we don't have any doctor appointments scheduled anytime soon. She will be visiting Iowa City and see the pulmonary doctors and neurology in the the next month or so, but that is about it for now. We look forward to spring and the warmer weather that surely has to be around the corner. We are tired of coats, hats, gloves, boots, snow, ice, and all the other winter stuff. I'm eagerly awaiting the day I can take Alayna out to the green grass and rub her feet in it. Most kids don't like the feeling. I wonder what she'll do? Alayna continues to teach us patience and reinforce our appreciation for our lives the way that they are....blessed.