A little piece of heaven

There was a video that I accidentally didn’t add to the previous Medek post, so I’ll add it here first:

Now here are some of the exercises he did on the last day.

We went to see the neurologist on Friday. This is the first time we see her. She is one of the neurologists from Children’s Hospital in Los Angeles.

The good news is – he looks good! The bad news is – as I suspected, there’s not much use in taking Nathan to see a neurologist.

Since he’s not having seizures or anything that might look like a seizure, she said there really wasn’t anything she needed to do with him. From her exam, she said he looked great and was amazed at how well he’s doing. She said that most of the patients that she sees with Holoprosencephaly are very involved with multiple seizure meds and other complications. She checked his reflexes, muscle tone, cognitive alertness, and said that he looked good with all of them!

I asked her about botox and whether she said Nathan would benefit from it and she told us that she is not the one that handles that, but gave us information about 2 other places that we could take Nathan to. She did say that she didn’t think he was a candidate and even if we took him, they probably wouldn’t do it for him as his muscle tone isn’t too bad.

So… I’m grateful to say it was a nice, non-eventful appointment.

Here are the pictures from our trip to the beach yesterday:

We’ve had a really lovely weekend. We got home Thursday and decided to take the weekend off and just chill. No Medek, no diet, no meds…just us relaxing and having fun. That we did – and quite well!

On Friday we went for a hike and had a bit of excitement. I was caring Nathan in the ergobaby and as we’re walking down the hill I tripped. Somehow, as I was falling forward and about to crush him, I managed to roll over and fell instead on my bum. I really have no idea how or what happened, as I have a huge cut on my knee, so at some point I was about to land on him … but I guess I have good mommy instincts 🙂 I guess if I had any doubts about my mothering capabilities they have now been subdued.

On Saturday we hung out at home and watched quite a bit of TV. Nathan was so happy to be allowed to watch (we’ve cut down his TV time to almost nothing) that he sat quietly watching our show with us without complaining. He’s been Mr. Cuteness lately and just chilled and happy. Then he spent the night at my mom’s so Owen and I could go on a date.

Today we went to Dog Beach and had a lovely time. Nathan went swimming and had a BLAST! I’ll add pictures of him in the ocean tomorrow.

Oh, and the most exciting news – we got our Dynavox for Nathan’s trial! His speech therapist and I set it up on Saturday and he’s going to start using it tommorrow. We are so excited to see what he can do with it!

Anyways, just wanted to send out a quick update about us. Tomorrow we start with the CME home program that Ramon gave us. I’ll keep you posted!