Thursday, June 14, 2012

It's Been a While

Where have I been? I have not been able to post for almost 6 months now. For some reason I cannot log in to this account from my office computer, so right now I am on another computer in the office. I also usually blog in my down time at work and since my hours got cut, I have not had much down time either.
I've had a lot on my mind lately, so I decided I'd find a way to blog. So here I am. A lot has happened in the past 6 months. Like I said, I am part time at my office now. I think this is actually a blessing for me, except for the financial part. Luckily I was able to pick up some hours at a restaurant close to my house. It doesn't make up for all the income I lost, but it's better than nothing. I am working evenings, so I was able to cut back on daycare and the best part, I get to spend more time with my son, which I've always wanted since I went back to work after he was born. I didn't want it to happen this way, but I got it and I love every second of my time with him.
Since my last blog we had a surgery anniversary. In February (the 16th to be exact) was the one year anniversary of Jesse's palate surgery. In March we had his one year speech evaluation, his 2 year cleft team appointment, his 2nd birthday and his 2 year pediatrician appointment. He's doing great. No major problems and he seems to be on track with his growth and development.

Paul is still in a lot of pain for his back and nerves. He's been working and in a lot of pain from it. His surgeon sent him to a pain center. The first one didn't work out and now he's at a different one. He's a candidate for a spinal cord stimulator, so we are waiting for work comp to approve it. If he's able to get it, and it works for him, his pain may decrease up to 50% and can hopefully reduce the amount of meds he takes. Below is a picture of what it is. It's implanted under the skin. The electrodes will block his nerves from sending pain signals to his brain. This of course means another surgery, but if it gives him relief, I'm all for it.

Now for what's on my mind today. I recently discovered that Jesse's hard palate is very high. He was on track with his speech, but lately I have my doubts. We've reached the point again where he's saying something and I can't understand him. This leads to frustration for him and me. He will repeat himself even, but I still don't understand. I am not sure if he's speaking in jargon, or actually speaking words, improperly. I read blogs and facebook posts and see what "normal" kids are saying and I can't help but compare and see that Jesse is not even close to them. He has a good vocabulary, but he can't speak a full sentence yet. I'm told that kids are all different in their speech development and soon he will get there, but I feel terrible when my child is trying to communicate with me and I don't know what he's saying. It breaks my heart. Since the high palate is a new discovery, I wonder if this is what's causing a delay in his speech development. I will need to bring this up at his next team appointment. In the mean time, we might increase his amount of therapy and try and work on his annunciation (I think that's the right word).
I am a bit taken back by the fact that no one has mentioned his high palate (or vault, I think they call it) and I was left to discover it on my own. Certainly this is something the plastic surgeon would have seen when she repaired his soft palate. My first hint was when we went to the dentist and he mentioned Jesse may need a palate expander at some point. Hmmm... this was also never mentioned to me by the PS. The dentist mentioned his repair looked great, so on my own time, I was peeking inside his mouth and saw the roof of his mouth and put two and two together. That is why he may need a palate expander. If he does need one, it won't be for several years. The dentist told us to come back in 6 months for a check up and cleaning and we'll revisit the palate expander possibility when he's closer to age 7. At least the word surgery has not come up again.

Now, it's mid-June. I work part time and I have 2 more days to spend with my kid so we have been taking advantage of that since I have no idea how long this will last. We've been having play dates with friends and family. We've been up to the lake once and have another trip planned this weekend. We play outside in the water and go to parks. It's fun. He's at a fun age and I am reaping the benefits. I also get to be a kid again and we have so much fun together. Of course there are days when he's a typical 2 year old where he refuses to nap, put clothes on or thows a tantrum, but the good times make me forget about those days. Here's to summer and enjoying every second of it!