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.

Oh, The Teething Continues & Her 1-Year Checkup!

Alayna has a smile that I just can't take enough pictures of!
For one reason, to get her to smile takes some work right now. Her teeth are causing quite a bit of discomfort.
Here is her serious look. She was enjoying the helmet off while she got a change of clothes. Just a little helmet hair to contend with....we are getting used to that!
See my teeth! I now have 4 teeth on the bottom and I'm working on another 4 on top!
Alayna loves to be kissed on the neck. She usually smiles every time.

Alayna has eyes that remind me a lot of Douglas. They are big and round.
New stickers! Now I am showing off kitties and doggies and my mom put my name on the back.
We love you Alayna!!!

Alayna is still teething and they are giving her quite a battle. Her top teeth are vicious and she whines quite a bit about them. We use Baby Orajel frequently and she responds to it pretty well, but they feel painful when I rub it on. I have to be careful where I put my finger too, she bites! I found out the hard way when she wouldn't let go. OUCH. I wish she could hold a teething toy herself, but she can't. She uses her fingers and hands instead and I'm not sure that is such a good thing for her. We try and hold a cold teething ring for her when we can. So, that battle continues on. Hopefully all of the top teeth will pop through soon.

Because of her teeth (I think anyway) she hasn't taken the pacifier for about 3 weeks now. This may be a good thing because sometimes these kids hang on to if for too long and it is difficult to take away. I'm just waiting to see if it is really the teeth and if she will even want it after they come in. She continues to be a very easy-going little girl who just closes her eyes when she is tired. She obviously doesn't rely on the pacifier to go to sleep, so it hasn't been an issue at all. Alayna loves her blankets though and prefers to have one when she naps or sleeps. She likes to hug it and sometimes puts it over or on her face. All of my other kids still sleep with their "blankies" and I'm glad they all had something to attach to and provide them a sense of security.

Alayna visited her pediatrician, Dr. Neptune, last Friday. She is about 29 inches long and that puts her on the "normal" growth chart at the 50th percentile. However, she is only weighing in at 17 lbs 13 oz which puts her at the 3rd percentile. None of us are too alarmed by this, even though I was a bit shocked to not see 20 lbs on the scale. I really thought she'd be close to 20 lbs. Anyway, parents of 1p36 children have said over and over that kids tend to stay at the same weight or gain slowly at times. Alayna is eating and that is what is important. She will grow at her own rate and it isn't necessarily fair to chart her on the "typical" growth chart. Alayna has been sick a few times over the past month with respiratory issues and an ear infection and of course, cutting those teeth. Her eating has not been as consistent as it usually is. She has lost a bit of weight and those things may be the contributing factors in addition to her increased therapy and workouts with Patti and her growing about 3 inches in 3 months! Overall, she is healthy and doing well. She got two shots and took them like the trooper she is! Drake was along for the visit and he couldn't believe how well she did. He even said that he'd probably cry more. Alayna fussed a little, but I told Drake that shots are nothing compared to some of the other things she's been through....piece of cake!

Yesterday, I tried to take her to JCPenney's to get her picture taken. I've yet to take her 1-year photos and we missed Christmas because of her being sick. Well, let's just say I'll try again in a few weeks when the other kids get their birthday pictures taken. She was fussy and not feeling well because of the teeth. They did get some cute shots of her on her back and I'll try and share them when they come in. Photos are difficult because she can't sit up on her own and the studios don't have many options for kids who can't sit up. And she isn't good on her tummy quite yet (getting better though). We tried a chair and she arched her back and slid down on her slick dress. We tried sitting her on a boppy pillow and propping her up and that didn't work either. Next time I think I'll take a bean bag and see if they could use that. I need to be more creative to make this easier on Alayna, the photographers, and of course myself!

Alayna continues to progress. That is the most wonderful blessing of all. Unfortunately, there are some kids out there whose progress is little to none at all. My heart goes out to them. We are so hopeful for Alayna's future! Alayna enjoys going to Patti's house and recognizes her instantly and smiles back. And Patti's little dogs continue to protect Alayna and provide therapy of their own kind (running around, barking, etc). I will try and get a picture of Patti with Alayna and maybe even Baxter and Scooby too (those are the dogs)!

Alayna is still doing well wearing her helmet. We change stickers about every couple of weeks which is a lot of work. Getting those little boogers off isn't easy even if you use GooBGone. I enjoy keeping it cute though. It has become part of the family! It requires attention just like everyone else. It needs constant cleaning and adjusting and goes with us everywhere we go. We get some looks when we are out in public, but nothing that has sent me into tears. Most people still look interested and simply give a little smile. Helmets are supposedly a common thing, but you just don't see many of them around. Alayna is so cute, she pulls off the look quite well. It is definitely working and changing her head shape. I might have said this before, but the most notable difference is on the sides of her head. The back of her head takes the longest. I have a feeling she may be wearing this a bit longer than what I hoped. That's okay!

It Was A Crazy Week!

Alayna really enjoys her 1 hour a day with the helmet off!
Her grin is becoming more "toothy." She is cutting another one on the bottom and about 4 on the top!

This position right here is actually a "reflex" that we need to try and break up. I can't say I completely understand babies development quite like the therapists do, but I've learned that the position she is holding is common for babies who have delays. I think that these reflexes aren't too bad, but they do somewhat get in the way of doing other things like rolling, grasping, etc.
Alayna has really taken to this frog she got for her birthday from Bella and Uncle Ron. If you squeeze its foot it "ribbetts" and she loves it! I think she enjoys its big eyes too!
Today, Dana and I got to attend one of Alayna's therapy sessions at Comprehensive Rehab in Muscatine. This is Kelly, one of Alayna's OT's. She was one of my students my first year of teaching!
Kelly really knows her stuff. Here she is stretching her arms up and then back down.

Sitting is a big issue for Alayna. In the beginning, she would get fatigued so easily, but Kelly has definitely seen a difference with that over the past few months. We have too! Alayna is getting so much better with her head control and when you pull her to a sitting position, her head doesn't lag behind as much and she can keep her head up for a longer amount of time. It used to drop within seconds.
Alayna has a few reflexes that seem to inhibit her completing a task like rolling over. As you can see, her arm gets stuck and that is because she isn't getting her arm up before she rolls over. And she prefers to roll to one side compared to the other. But this is improving too!
Practicing sitting some more! Kelly pulled her up from a laying position to a sitting position a minimum of 5 times and she was still holding her head pretty good by the end.
Hi mom! I guess I'll give you a look! We are so proud of you Alayna! She is doing a really good job of bringing her hands together at mid-line and keeping them together. She's beginning to enjoy playing with her hands and fingers. Hopefully grabbing objects and toys will be a milestone right around the corner.
Alayna likes to roll to her right side over her left. So this is a picture of the PT using a blue peanut to block her on the right and force her to go to the left. She will go to the left if that is the only option.

Hi everyone! Sorry for being behind on posts. This past week was very hectic. Alayna had been battling a cold since her birthday and last Sunday she would barely eat and she was extremely fussy and wheezing in her chest. She's the kind of kid that never cries and she cried a lot that night. She slept next to me and I got fearful that we were going to be heading to Iowa City. Alayna was very sick and I knew it and I took off work on Monday. I was up at the Pediatric Group walk-in clinic by 7:00 am that morning, but unfortunately her pediatrician doesn't work Monday's in the clinic. We had to see a different doctor that is unfamiliar to her diagnosis and she wasn't given anything but an oral steriod and we were directed to continue albuterol treatments. It's very difficult to see other doctors because they just don't know Alayna's history and no matter how hard I try to express my concerns and fears, it just isn't enough sometimes. I felt like I was repeating the visit we had prior to Iowa City.

Dana took her in the next day to see her pediatrician and she ended up having an ear infection and enough junk in the lungs to put her on an antibiotic. I don't know what was different from the day before? We continued breathing treatments every hour alternating water and albuterol. We even took the step as to calling the Pulmonary doctors in Iowa City to see if they could see her that day. They were swamped though. So, this week has been long with lots of interrupted sleep. I am beginning to think I have a newborn baby again. And I'm sure you understand that posting was just not the top priority this week.

But, I can say that she is doing much better. She is still a bit rattly in the chest and back, but she has some strong coughs now to help get rid of it. We got to her therapy session today and she did wonderful. I've seen so much improvement since Christmas time. I learn something new every time too.

Alayna also goes to the CTC tomorrow with Grandpa Denny and on Friday she has her 1 year check-up. I'll let you know how both of those go later this week.

She continues to make us smile each day. She just has this adorableness about her that we can't get enough of. We are so proud of how she is progressing. I still have the ultimate faith that she will get "there" someday, it'll just take a little more time.