No Need For Nap Time

Ben has been gradually getting less and less interested in his afternoon nap. Both today and yesterday Ben has skipped his nap all together. Yesterday, I put him in bed around 1:30 (his normal time) and he just played in bed until his afternoon pump feed was done at 3:30. He rolled around every inch of his bed, checked out every crevice and threw anything not tied on over the side of his crib. So far today, it is an exact repeat of yesterday. I treasure his nap time! It was my two hour mid-afternoon vacation! I knew he would be giving up naps eventually, I just didn't think it would be so soon - especially considering he only sleeps 9 hours a night. At least he's happy just laying in bed getting his fed for two hours. That's better than nothing. But no nap days = grumpy evenings with Ben.

Now what?

Just when I thought everything was falling in place for Ben starting preschool, we hit a huge road block. Ben needs a nurse to go to school with him every day since he has to be suctioned. I've been concerned about finding a good nurse for Monday, Tuesday and Thursday since I first started the school process (we already have someone we love for Wednesday). It is so very difficult to find a nurse we like, Ben likes, is comfortable and capable of taking care of Ben and someone we trust to be with him without me around. About a month ago, a nurse interested in picking up those days came out to the house to orient. We thought it was going to be a perfect fit. She was suppose to start the beginning of August because it takes a good month for people to understand Ben and his care (he is difficult to understand because he doesn't talk and has little facial expressions... so it is hard to tell when he is mad and when he is laughing). I followed up yesterday to confirm we were all set to start with the new nurse in two weeks. This morning I learned that she hurt her back and doesn't think she is going to be working with Ben now. Now what?!

They are looking for someone else, but I'm concerned we won't find anyone. And, I don't want to lower our expectations because of the time crunch. I'm sure all the good nurses are already taken by now too. To say I am stressed in an understatement!! Hopefully as a last resort, they will let me play the role of a free nurse so Ben can go to school.

Huge Progress!

Ben has been making some great progress lately. He is back to rolling consecutively (he stopped after his leg break) and he is getting stronger with standing. He still has a long way to go and isn't able to straighten his legs yet, but has definitely taken a spurt lately. He is able to sit up on his own for about 30 minutes while watching TV (still can't get into sitting and just falls when he wants down - but still much better than before).

We have really, really been working with him a lot at home lately mainly because we aren't getting anything accomplished at physical therapy - he is scared to death of someone working with him, especially someone he doesn't trust (can't say I blame him). He starts crying and throwing a fit as soon as we pull into the parking lot and it brakes my heart. So I've decided to make a daily schedule of all his PT exercises and have us check mark them off as we do them. I've found it makes me more aware of getting everything in during a day. And Ben still isn't a big fan of them, but he is much better at home working with someone he trusts.

One of the list items is crawling. This has been our hardest one since Ben doesn't like being on his belly, can flip over on his own if you put him there and convincing him to try to move is another story. Well tonight we had a breakthrough!!! This video probably doesn't seem like much to most, but it is HUGE for him. HUGE!!!

Photo and video editing at www.OneTrueMedia.com

Preschool Here We Come!

Ben is all set for preschool! Can you believe it?

We just had his last meeting with his school team and we have set his goals for the year. I'm so excited to see how he does in school. He definitely has his work cut out for him... his goals will be a challenge but I think he is capable. The first day of school is August 27. I will drive Ben and his nurse to school in the beginning and his nurse will stay with him for the entire morning. He will also have an aid to help him with his work. We are thrilled with the preschool teacher assigned to him as well. She is wonderful and worked with our CHARGE friend Katie. It is so nice that Ben will have someone working with him already familiar with CHARGE.

Pool Time

It has been hot, hot hot! The other day, we took Ben over to his cousin Elle's house so the two of them could play in the sprinkler pool. It was in the 90's, but the hose water was still freezing!!! So, the two of them ended up sitting next to the pool simply dangling their legs in. This picture of them cracks me up because it just defeats the whole purpose of the pool. They still had fun though.

Visit in Youngstown

Mike and I went to Youngstown last weekend to meet our new nephew Ian. It was a great visit and even though we were only there for 24 hours, we got to see and do so much. Wish we could have brought Ben, but he was in good hands with my mom and dad at home (plus, his great nurse at night). Ian is definitely a cutie and so strong for only 6 weeks old! Ben will get to meet him for his 3rd birthday party.

Happy 4th!

Hope everyone had a nice 4th of July! We definitely did. We spent the day at my parent's house. Mike's mom then arrived at our house in the evening to spend the rest of the weekend with us.

Below are some pictures from my parent's house. They bought this blow-up pool that is filled with balls. Ben thought it was the coolest thing! We had him sitting in it, but whenever he would laugh and get all excited he fell backwards. Finally we just let him lay in it. He loved when we tried to bury him in balls.

He also went on a long wagon ride with his cousin Elle. Ben usually doesn't like Elle to be very close to him, but he didn't mind her joining him on the wagon. It will definitely be interesting to see Ben with other kids in preschool.