Comfortably At Home!

Saying "goodbye" to one of my favorite nurses, Stacia! She was the one taking care of Alayna when she got off the helicopter.

Another favorite nurse, Emily. She took care of Alayna many days (and maybe nights...I don't remember). I just know these nurses seem to be there around the clock. She was great!

Nurse Jo took care of Alayna during many of the days. She has been with U of I hospitals for over 30 years. She was 19 years old when she started. We appreciated her expertise and care.

Alayna was so tired when she got home. She'd fall asleep just about anywhere.
By hospital, I'm going home!

Alayna and Daddy! She is getting so much hair and it's kind of awkward. Piggy tails may be the next best thing. Now we need two bows in every color!
Sitting up on the couch and still very serious.

This is Alayna during "mommy therapy." She is sporting her SPIO (Stabilizing Pressure Input Orthosis) vest and hot pink, legs sewn together, biker shorts. Both are to assist in keeping her more stable and legs together. She got pretty ticked off in about 10 minutes.
Mom is mean! Actually I put the shorts on to make her sleep with her legs together and not "froggy."

It's been really nice here at home. Alayna seems to be doing very good. She is getting back to being her normal self, but I honestly think she forgot that she could smile. For two weeks, she didn't have much to smile about, did she? But her smiles and grins are slowly coming back. After being in the hospital and being interrupted so often, her sleep schedule has been a bit off. For the first few nights it was difficult to get her to sleep much better 11 pm (one night it was 11:50 pm) and then she sleeps until 9 am! That just doesn't work around here though and I've tried telling her that. Last night was much better. She was in bed by 9:30 pm and up by 8:00 am. It will just take time to reestablish our normal routine. I go back to school Thursday, so she'll get an early morning wake up call.

Grandma's, grandpa's, Great Aunt Dixie and a few other family members have volunteered to watch Alayna until I go on Christmas break. I can not thank then enough. No words will express how grateful Dana and I are to have such wonderful families helping us out. It is all of our goal to keep little Miss Alayna healthy so that this Christmas will be extra special spending it together. Remember, we spent her first Easter and Thanksgiving in the hospital. This is her first Christmas and it's extra special. I have a feeling she'll remain a kid at heart forever and ever.

Alayna went to see her pediatrician yesterday. She weighed in at 17 pounds 12.5 ounces. She's still hanging in there and just now getting back into her normal eating routine. We've been taking it slow because she was really burpy and spitting up the first few days. I'm sure food was a shock to her tummy. Also, she is now on a medication called phenobarbital. Dana, Dr. Neptune, and myself would love to see her weaned off of it by 6 months of age. I might try to meet with her neurologist sooner than that to see what the likelihood of getting her weaned off of it earlier would be. It tastes more disgusting than ever and we've even had it flavored bubble gum. I dread having to give it to her twice a day for 6 months. UGH. And we have to make sure the doses are about 12 hours apart to keep the levels the same in her body. So, now we won't leave home without it. As long as we give it to her very, very slowly she usually takes it okay and doesn't yack it up. She is also taking Pepcid, but just for a little while. It is actually less affective than Prevacid.

Today, I've spent a lot of time on the phone. First, I'm bummed about her cranial helmet. We didn't realize it would take our insurance company so long to approve it (we hope). It could take up to 30 days and right now it is still pending. The 30 days should run out here in the next few weeks. It better be done prior to the turn of the year. I'll make sure of it. They run approximately $1800 and we are praying they pay for part or all of it. They bad thing is that Alayna is going to have to be recasted. The doctor doesn't like it to go much beyond 2 weeks and it has. Also, it may be a good thing since she was pretty much on her back in the hospital for 2 weeks.

On a good note though, I've contacted our insurance company, pediatrician and Comprehensive Rehab in Muscatine. It is our hope that Alayna can start therapy there soon. It would be so much closer than the CTC up in Moline. And Alayna needs more therapy. Dr. Neptune agrees that two times a month just isn't enough for her. I'd like her to go at least 2 times a week. I'm hoping that we can make both places work. I'd like to keep Alayna in the Early Intervention Program until she doesn't qualify anymore at the age of 3. I've learned a lot so far, but there is far more for me to learn regarding her therapy, the state of Illinois, assistance programs, and education. I plan to join a parents group for disabled children very soon. That's the best place to learn the in's and out's.

Alayna is going to begin a new plan for babysitting beginning in January. She has been cared for by Lori since the beginning. And I thank her for taking good care of Alayna. All of my kids have went to Lori's house and she is wonderful. I couldn't ask for a better caregiver that deeply cares about my children. Douglas goes there now and he will continue to go there. However, just based off of Alayna's needs and her diagnosis, she will now be going to Patti's house 4 days a week and to Grandpa Denny one day a week. These will be a one-on-one situations in hopes to reduce the amount of germs she's exposed to and keep her healthy, assist in her development, and basically just give her constant stimulation. We just need to keep bugging Alayna and making her work to get stronger. Alayna is not a typical, developing child, therefore requiring more attention to fill her needs. Again, saying thank you is such a small word expressing the kind of gratitude I feel for all of these people. But I'm going to say it, "Thank you." As parents, we just want to maximize Alayna's potential and do what is best for her.