Bentley earned his Arrow of Light award in Scouts. He was pretty excited to get everything done to receive this before he turned 11.
This is Bentley at his best! He would always pose like this if I would let him. I usually don't share his goofiness but I thought I would this time. I need to enjoy this part of Bentley more. He is a funny kid and I need to laugh more and enjoy each moment. It seems like he only wants to share this side when I am trying to get him to do something else though. I am trying to learn to take a deep breath, laugh and then get back on track.
Here he is all dressed up for the part. We were afraid he was going to get to wear that lovely triangle for quite sometime, but it finally washed off.
Now for the girly stuff.....
This is the one picture I got of Abby in her costume before the show. I should have embarrassed her, made a scene and took more but I didn't.
My camera doesn't take great shots in the dark but here she is, (second one from the back), doing what she LOVES. I am not kidding when I say she loves clogging. When she thought the December recital was it for the year she started begging Lenn and I to let her clogg the next year. Her practice was on Wednesday's and she had to have a special outfit each week. I am quite sure they are worn out from the washer but they were her clogging clothes and she HAD to wear them each week. She didn't care what the kids in her class said about it either. That's my girl, determined as ever.
She had a great teacher and hopes she will teach again next fall after having a new baby. We'll keep our fingers crossed.
I have video so as soon as I take the time I will post that too.
I promised updates and I haven't been great. Sometimes it is hard to know what to write and how. Today has not been the greatest for Owen. He hasn't been himself. He has given a few smiles but I had to work for them. Last weekend I had to drop his feeding rate again. He seems to be much happier at a slower rate. He has lost a little over a pound since we cut his food amount. I was happy with only a pound, I feared he would lose weight faster than that.
Last week his therapists came and brought some new toys. I am really excited and hope I can get him to use them on one of his good days. I will for sure document and share. The day they came he had a terrible day due to a faulty trach, which has since been discarded!! I felt so bad for Owen, after they left I changed his trach and put him down for a nap and he slept from around 3-9:30 p.m.. He was so exhausted and I felt terrible that I hadn't caught the problem earlier. He re-covered though. He doesn't have the reserve that he used too. It is hard to face that reality. But for now, Owen still smiles! I have often said, "as long as he has his eyes and smiles we can deal with anything." Thankfully he has been blessed with strong facial muscles to provide that.
We are a family that have learned we have no control of our future. We are taking it a day at a time and enjoying the ride.
Lenn and I have four children. Two of which were born with a very rare muscular disorder. Neither one have an exact diagnosis but it is some kind of Spinal Muscular Atrophy.
Our other two children are healthy and active.