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Sophia

I wanted to share something very quickly that happened on Tuesday that was pretty exciting for us — especially me as I was the one that witnessed it. As most of you may remember, Sophia was very lethargic when we first met her and though she seemed more alert and active as the week went on, she has never really made us feel like she noticed us or paid any attention to what we were doing or saying — we always said that she seemed to be in another world.

After she arrived in the states, and we saw a neurologist, we realized that her problems were much greater than we originally thought. She has had a massive stroke and basically half of the left side of her brain is missing. According to the neurologist, there is no way to tell how much she can learn or communicate — if at all. So, Sophia is kind of in a little world of her own, it seems. She hardly ever makes eye contact or joins in with any of the kids when they are laughing or playing. She usually just sits and stares out into space. The kids still play with her and if they bounce her up and down she will laugh and seems to enjoy it. But, she never really engages much with us.

Well, Tuesday she had OT and when we got home I sat her in the floor and talked to her a little. She actually seemed to listen — just a sense I had. She made brief eye contact with me and watched what I was doing. So, I hid my face with my hands and wondered if she would pay any attention — she usually doesn’t even look when I do this. She briefly looked and then looked away. I hid my face again, and then as soon as she looked at me I uncovered my face and said, ” peek-a-boo!” She seemed to smile so I did it again. She burst out laughing! I thought maybe it wasn’t related to what I was doing as she will sometimes just laugh for no reason as she sits on the floor. I did it again and she laughed hysterically! Then she started watching me and actually getting playful. It was amazing to me, as she almost never pays attention when I play with her — unless it is rough housing. It is almost like she woke up and joined in with me. I can’t tell you what it felt like to all of a sudden feel like she was there with me paying attention and enjoying our activity together. She came out of her own little world and joined into ours for probably 30 – 45 minutes. She laughed and played and was a participant for once. It didn’t last that long, but how wonderful that time was.

After a few minutes, I realized this was real and we were playing together, so I ran and got my camera — I just had to document this day. This girl played — really played!

566.7 Hours

Last spring Bethany received The Vest in the mail. This pink vest saves us a lot of time when it comes to PT for Bethany as she has to have PT three times a day every single day of the year. We use to do it all by hand, and it takes quite a while to do this, but her pink vest now does the majority of her therapy. I just happened to look today as I was turning on her vest and realized that she has done 566.7 hours in the past 17 months. That is a lot of hours for a kid to sit — and that does not include the 6 nebulizer treatments that she gets everyday right before her vest. So she actually has sat through a lot more than 566.7 hours for her therapies. Cystic fibrosis is very time consuming. Every single day Bethany gets 3 albuterol nebulizer treatments, 2 hypersal nebulizer treatments, one pulmozyme nebulizer treatment, 2 Qvar inhaler treatments, three times on her vest, one mile of running, and takes approximately 25 -30 pills. This is what she does if she is not sick and doing well. When she is sick some of these treatments increase. The amazing thing to me is that she seems to take it all in stride and almost never complains. I can only remember one time that she seemed to be in a pensive mood and told me she wished that God had not made her a CF kid. That was so sad for me. But other than that one time, Bethany is so full of joy and energy that you would never know that she has anything wrong with her.

We have really enjoyed these past few days. The weather has been beautiful — some days cool and then some very warm. The leaves have started to change color a little and we love to sit on the porch in the mornings and eat breakfast. This morning it was raining a little and a few leaves were falling from the trees as the wind blew and it was just a perfect morning on our front porch. Even Sarah commented to me on how pretty it was.

This little guy comes up on the porch every morning to get something to eat from us — usually peanuts or cheez its.

Just a few random pictures of the past week or so — not much going on.

Bella is definitely attaching. She wants me to be with her every single minute. When I feed Sophia her bottle, Bella actually cries and tries to pull her off my lap. When I leave the room she runs after me and if I go out the door she stands there and cries as I leave. As soon as I come into a room where she is, she runs and grabs me and wants to be held. This girl just can’t seem to get enough of me holding her — and boy is she jealous. She wants to be number one all the time. This is kind of funny as I was worried that she didn’t seem to want to have anything to do with me when she first arrived in the states. Not so anymore. She is growing and is learning to play and is doing so well. She is rather amazing to us.