Saturday, June 6, 2009

A Lot of Appointments, A Little Swimming and Mowing

This has been a busy week. Most of Monday Lindy and I were unpacking and recovering from our weekend away. The rest of the week was full of appointments. Long post ahead!

On Tuesday morning we took the kids to the Special Infant Care Clinic, the follow-up clinic through the Baptist NICU. They had an 18 month adjusted age developmental test. We got there at 9am and I went with Lindy and the psychologist and it took 1.5 hours for her testing. While we were gone they did the physical check-up on Will. He weighed around 22lbs 8oz. Drew said he was moving so it's probably not exact. He was 31.7 inches tall. They said he checked out great. His weight stayed in the same percentage on the growth chart (between 10th-25th) but his height jumped up to the between the 25th-50th (they use 18 months adjusted on the growth charts right now). The little guy is getting taller! Between the growth in length and being so active, it's no wonder his pants are getting bigger and bigger on him. When they were done testing Lindy we flip flopped and Drew took Will in for his developmental testing. Lindy weighed in at 21lbs and 12oz. She was 29.3 inches tall. Lindy stayed the same in length (5th percentile) but she jumped up to between 10th-25th in weight. Little girl is getting some chunk on her! ha ha!

The developmental testing was interesting. The psychologist was really nice and did great with the kids. She did so many little tests with them. It takes about a week for her to score them and get the results to us. Right now we don't know the results, but we were very proud of them. I was very pleasantly surprised with how much Lindy could do. There were some tasks that she couldn't do but I KNOW it was because of her vision loss. Do these tests take into account vision loss? NOPE. We don't put a ton of stock in what the numbers tell us because of this fact. We know they have to do the tests because they qualify her for services, but they don't take into account all her special needs. Nonetheless, I thought she did great! I was proud of her. Drew said Will did really well too. He felt like Will was able to complete most of the tasks she asked him to do.

One new, well not exactly new, term was used in this appointment with Lindy. At our last few PT visits they have told us she has tight ankles. Because of this they are finally saying she has a very mild form of cerebral palsy. Just in her ankles. They say her arms and legs are fine. It is called mild spastic diplegia. Spastic means tightness and diplegia means lower extremities. We were definitely hoping to avoid those words but we really aren't too worried. Everyone has said she will walk. Her ankles are a little tight because of the brain hemorrhages she had when she was a week or two old. The hemorrhages damaged the white matter outside her ventricles. Considering Lindy had a Grade 3 and 4 (4 being the worst) we will take tight ankles. It could have been so much worse. Because her tight ankles are all related to neurological stuff we will be referred to a neurologist at some point.

After the appointment we went to McDonalds to eat lunch. I was sitting there and heard "Excuse me, you guys look so familiar. Are you the Southerns?" How strange is that?! She was actually a NICU nurse at Baptist but we only had her one time I think. I always heard her name but was never exactly sure who she was. She recognized the kids from their pictures in the NICU. Right after talking with her we saw our favorite neonatalogist fellow from Baptist. They all must hang out at McDonalds on their days off! Will fell asleep in the stroller in McDonalds. They both fell asleep in the car and then we put them in their beds when we got home. I had to finally wake them up. The testing must have been exhausting!

Thursday was another big day of appointments. Lindy had a speech evaluation first. We had her evaluated by a pediatric speech therapist and a therapist who specializes in voice disorders. The voice disorder therapist was actually pleased with Lindy's voice quality at this point. She was able to hear Lindy make several of her sounds and said her voice isn't so bad considering one vocal cord is paralyzed. She said in the future we should probably do something to strengthen her voice, but that won't be for awhile. She said Lindy needs to develop her speech and language and then they can start working with her. The speech therapist actually recommended NOT starting therapy right now. Lindy's hearing therapy is actually a lot of speech therapy. They go hand in hand as we want Lindy to listen and talk. Because she is getting this weekly hearing therapy she said that is enough for right now. What a relief to not be adding another service right now!

After the speech evaluation we had physical therapy and we picked up Lindy's braces. They remade the long one for her left leg. It is shorter and much better for her. On the short one for her right foot they added some additional padding and something on the bottom to stop her foot from rolling. The long one is a pain to get on but she is doing well in them. During her session on Thursday she stood BY HERSELF for 5 seconds! She is cruising all over the house. She pulls up all the time now, all day long, on everything she can. Her vision teachers really wanted her to cruise for awhile because it will help her learn her surroundings. They got their wish. She goes around the kitchen and all over the living room. Way more cruising than Will ever did. Yesterday I put her behind a walking toy and she took off with it. She was so cute pushing her little baby stroller. She'll be walking in no time!

Willy Will had his 14th tooth break through this week. His bottom right canine came through. Will got to play with our friend Esther while we were gone on Thursday. She took him outside and I know he loved that. He took a great nap, they must have played hard! Will's new obsession this week is with his, ummm, well you know, his you know what. You know what I'm talking about? He's discovered it and enjoys playing with it during diaper changes. He also loves going outside to play and he loves watching our friend David mow our grass. He stands at the front door and watches him go back and forth. Tonight I got his bubble mower out of the basement and let him mow.

It got hot this past week so we busted out the blow up pool. We got to swim in it for an entire 25 minutes this week! I got it out, blew it up, filled it up with water and then it rained the rest of the week. On Wednesday we got in for 25 minutes before we heard thunder and had to get out. Lindy wasn't sure at first but did okay. Will loved it. Lindy did better when she was in my lap rather than in her float. Neither wanted to sit down in their floats. They both stood up and walked around in them.

I need to end this book and go to bed. This week's pictures.......

Our 25 minutes in the pool.

Will looked so sweet sitting with Drew one day.
Just up from a nap.
Lindy cruising around the kitchen table.
Lindy with her braces on. With the socks you can't even see them. I'm working on shoes that will fit over them. NOT easy to find. Blue eyed boy (with dinner on his face).
Still enjoying the swing set.

Our little mower boy.

Fun with Daddy.
Going down the slide!
And possibly the most awesome, best picture I've ever taken! Check out that hair!!!!!! The wind was blowing it and I took a picture at the right time.


Mimo said...

PLEASE don't cut that hair!!!

Anonymous said...

He needs a haircut !!

becca said...

:) Don't get in a hurry to cut it - we just cut my 21 month old's hair and it turned out worse than before it was cut...

As for shoes for Lindy, a friend of mine whose son had similar braces done at Duke was given a pair of shoes to go with the braces. They don't look pretty at all, though.

She said sometimes Stride Rite will have some wide shoes that fit and sometimes Wal Mart but it's like a scavenger hunt to find them. She gave me the name of a web site but I cannot remember it - will have to get back with you on that one.

The kids are adorable and I love following your blog and seeing Lindy's wonderful progress!

Take care.


Congratulations on the braces! I'm glad they are helping her get around!

Lisa Towery said...

Love the pics and to hear about all the wonderful things the Southern Babies are achieving! I sure do miss them! I am assuming eating is going well...when is then next swallow study?

hugs to all!
Lisa "OT" Towery

Perri said...

My friend, Vicki, whose son wears braces like Lindy's says the first thing you need to do is take out the insole of the shoe. Every time.

Also, buy a flat sole shoe - like a skater shoe. In a wide width.

Also, Croc type of shoes work great for Seth and they are lightweight so it's easier for him to walk in them. They tend to be more flexible and they work best.

When you buy the Crocs, the place that is harder to fit will be over the top of his foot. You want to have to work it on, because those will stretch out. So they need to be tight fitting at first.

She buys them at Payless too when she can and she says the brand is Airwalks from Payless.

She said if you are buying a size that is more than 2 sizes larger than normal, you need to get a different kind.

She also said that they need to be FLAT on the end, not rolled up looking, because they pitch the kid forward.

Overall, the Airwalk Crocs are best.

Hope that helps some - your kids are adorable ;)