Updates about "Miss Alayna"

I needed at least 6 arms during Alayna's first hair cut!

Holding the toy, the pacifier, the cape, her....aaaahhhh!

All I could do was smile and laugh! Alayna didn't want her hair cut. She wanted a nap!

More fussing.....

Wild thing!

Such a sweetie.

Stander time which seems to be really helping her bear weight!

Douglas and Alayna getting ready to head to the ball park!

"Mom, is that a ceiling fan?"

All smiles, but not directly at the camera.
She still doesn't make eye to eye contact all of the time and it's difficult to get her to look at the camera.
Alayna, hands out of your mouth please!
Now she looks and it's kind of blurry! Oh well!

Iowa City Visits

Cardiology

It was our goal to get all of Alayna's documentation from Peoria transferred back here to Iowa City Hospital. Cardiology is one of the last areas we needed to do this in. So, we headed to Iowa City a few weeks ago to check in with Dr. Reinking. We didn't expect any problems with Alayna's heart, but some of the other 1p36 kids do have heart issues to deal with and we feel it is best to be proactive. Alayna did have both a VSD and ASD at birth, but both healed and she was released from her previous cardiologist at about 2 months of age.

In Iowa City, Alayna had a chest x-ray, EKG, and a echo cardiogram performed all in a matter of two hours. She was really good during the first two things, but was really tired by the time the cardiogram was supposed to be done. All I can say is thank God for patient doctors and musical toys! The x-ray and EKG looked good, but when the doctor listened to Alayna he thought he heard a slight murmur. To be sure what he was dealing with he ordered the cardiogram. He got a good look at her heart and everything was just fine. We don't have to return to cardiology for 5 years! Yippee! However, if her pediatrician would have a concern or we notice her tiring out more than normal or sweating profusely, then we'll want to go back sooner. But I hope we don't have to. This was a great way to start off the day at Iowa City!

Genetics

This is the very last piece of the puzzle that needed to be transferred from Peoria as well. Our new Pediatric Genetic doctor is Dr. Sheffield. He took pictures of her hands, feet, and face and was very pleasant to talk with. He is definitely familiar with 1p36, but like he said we will probably teach him more than he can offer us. And like I've always said, the parents are the experts in this case. 1p36 is such a newly diagnosed and researched syndrome and there is still lots to be discovered. The plan is to check in with them every year or two.

1st Hair Cut

Alayna got her first hair cut at Kountry Kutters. Pam was so patient and I am so grateful. Alayna was tired of course by the time we got in the chair and it was all I could do to hold on to her, the pacifier, and a toy. She kept wiggling out from my arms. But we got the job done and now her lovely curls comb out much easier than before. Having all of that hair is beautiful, but such a job to keep untangled and nice looking.

Visit from a Virus

Alayna's youngest brother, Douglas, caught a virus right when school was ending. He had absolutely no symptoms other than running a temperature for 6 days! I took him to the doctor two times because I wasn't convinced that it was viral, but it was. Then Alayna must have caught the same bug. She ran a fever for 3 days and was as cranky as ever. Her appetite wasn't as good as it usually was, but she had no other symptoms at all. I always worry a bit more with her than the other kids because I'm afraid her issues will escalate into something else. So, I took her to the doctor as well. They poked her finger and the blood test also showed she was fighting off a virus. I shared this information with a few of my other friends and some of their children have recently gone through the same thing. Be on the watch for the this weird virus!

Therapy

Alayna's eating is continually improving. In the last few days she has eaten almost a full Eggo waffle and a huge bowl of macaroni and cheese! She really is getting the hang of chewing and when I tell her to "chew it" she gives me a big smile and thinks it is funny. Today at PT, her therapist was impressed at how well she would stand freely with her AFO's on. She needs some support still, but for her to keep herself upright is a huge accomplishment. We will continue to work on this and especially help her keep her knees from bending.

Summer Fun

We are enjoying the summer break and spending time with each other at home. Alayna has been a true joy these past few weeks (minus the time she had the virus) and I like the fact that she is easier to entertain and play with. She also continues to love to be cuddled and hugged and I enjoy that too!