As I said before, we were absolutely thrilled to finally have our little girl home. It was mid-April.
We got into a routine at home. Layne still got up and got the kids breakfast while I tended to Eirion and tried to catch a few extra minutes of sleep. She didn't sleep much at night and cried a lot so Layne spent many nights on the couch just so he could sleep and be ready for the next day. She did still sleep a lot during the day sometimes, so I was usually able to get a shower, but there were many, many days that I spent the entire day just holding her and getting nothing else done. We realized that it was o.k. to not get everything done during the day that we wanted.
For about the first month, we had a nurse come periodically to our house to check on her, weigh her and give us any help we may need. It was so exciting to see her continually gain weight. Her cheeks filled out and her legs got chubby.
We blessed her in church at the beginning of May. Layne gave her a beautiful blessing. He blessed her that she would be a light, there would be a balm of healing, that her spirit would be unfettered by her body, and other wonderful things. It was a wonderful day.
Layne was getting ready during this time to go to England. He was directing the Study Abroad program in London for ASU and when you do that, it is a 2-year commitment. He was in his second year. Our son, Devon, had worked really hard to earn money so he could go also. This was planned before we had Eirion and knew of her challenges. He did offer to stay home, more than once, because of Eirion. But Devon had worked so hard so he could go that I didn't feel it would be fair to him and I didn't want him to resent Eirion, so I told him he needed to go. Eirion was doing really well and I was confident in my ability to take care of her. That's not to say it was easy, because being without your husband for 6 weeks with lots of kids and a special needs child was not easy, but we did it.
My parents came to visit in May. One night before bed, my mom noticed that her Mic-Key button seemed loose. I didn't think too much about and just thought she was worrying too much. Well, Eirion woke up at 4 a.m. screaming and when I picked her up, it came out. The Mic-Key button is held in place by a tiny balloon that is filled with water. If the balloon pops, for whatever reason, the button will come out. I freaked! It scared me so bad. I did have a replacement, so I got it and quickly read how to put the new one in. It seemed to work. Luckily, we had an appointment with her surgeon that morning. He checked it and said I did just fine. That wasn't the first time it came out. We had to replace it 3 or 4 more times.
At the beginning of June, Dani left and flew to Idaho to work for Layne's Mom. I still had Kyrie, though, and Kyrie had a driver's license which was more help than I can even say. It was wonderful to know that I had her to help me.
We rejoiced in every little milestone she reached--especially because we were told that she would never reach most of the milestones she reached.
She would track us with her eyes or track the toys that hung on her carseat, she would lift her head, she would listen when we would talk and she loved to suck on her fingers. She loved her fingers and they were always near her face or in her mouth. She could also suck and loved to suck on our pinky fingers.
Probably the most exciting milestone was when she would "talk". One day I was talking to her and she started to "talk" back. She would gurgle and make happy sounds when we would talk to her. I loved it and got a thrill every time she did it.
We didn't leave home a whole lot during the summer, but the boys swam in our pool a lot and I tried to keep them busy with various activities. They probably played on the Wii way too much, but sometimes that's the way it goes.
Layne got home the first part of July. Also around this time, we had an appointment with the plastic surgeon who was going to repair her cleft lip and palate. He asked us if she was taking any food orally. I said no, because of her cleft lip and palate. He said they have special bottles made just for that, and if she passed a swallow test she could start taking a little bit orally. He was irritated, because the swallow test should have been done in the hospital, but because she had T-13, they hadn't done it.
She passed her swallow test with flying colors, so we were able to start giving her a little orally. Again, we were thrilled and she liked being able to taste something.
He also referred us to a pediatric cranio-facial specialist in Phoenix to help prepare her for surgery. She had us tape Eirion's face in various ways so we could get the best possible results when it was time for her surgery. She hated it, but we wanted to do whatever we could to get the best results. We also met with a feeding specialist who told us that we should increase how much she was taking orally. The surgery was tentatively scheduled to take place in October.
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