Wednesday, February 27, 2013

A Crazy Couple Weeks

I knew this month was going to involve some changes, I never realize how much would actually change. I found out my job may change significantly, Paul's surgery was denied, then later approved, we had our last appointment with our cleft team and visited a new one, and Jesse was evaluated with the school system to see if he qualifies for more speech therapy.

My job: My boss came to me one day and said we might be closing the business and join another one. At first I was terrified, but after discussing it more with him, talking to a friend in the industry (who made a similar move herself) and thinking about it more, this is a good thing. Nothing is in place yet and my boss hasn't made a final decision, but he has stated that if he's going, I will be coming with. He won't go without me. That's very comforting. I also realized that this would be a longer commute and less convenient, but it would involve more money, good benefits and  more opportunities in the future. If this all happens, I will be able to support my family on one income and I won't have to work two jobs.

Paul's sugery: Paul's been waiting to get the spinal cord stimulator. The trial was a success and if they approved the trial, they will approve the stimulator, right? Wrong. A couple weeks ago the attorney contacted us and said that they were not approving the surgery because they have surveillance of Paul doing something he shouldn't be. This was harsh, Paul doesn't do anything he shouldn't be because he physically can't do those things. he was pretty bothered by this, in big ways. He began driving himself insane trying to figure out what he did that he shouldn't have. He came up with some theories and the attorney said he would request a hearing so we could find out. Then, out of the blue we got another call saying surgery was approved. I believe this was a tactic of theirs to try and get Paul to back out, as if he was defeated. I would not let that happen even if he did give up. The attorney said they likely got false information and nothing was actually found against Paul. Either way... surgery is now scheduled, for March 5th.

Last week we visited Shriner's Hospital. It was definitely a different experience. Inspiring. I left there with a better feeling than expected. They know what they are doing there, they have a great team and the system they use is unique, yet effective. They must have seen 15 other kids that day. They put you in a waiting area with all the other families and call your name, you see one of the doctors and then you go back to the waiting room. The waiting room has a tv, books, toys and all the other kids. Plus, we didn't wait more than 10 minutes before our name was called again. We met with a Social Worker, a Psychologist, a Speech Language Pathologist, an Audiologist, an Ear, Nose and Throat doctor, a Plastic Surgeon and a Nurse Practitioner. We even saw a Photographer. They gave us a lunch break from 11:45-1pm. The cafeteria was very cheap, had decent food then there was a play area for the kids to unwind. Everyone we met with said Jesse was doing great, even with his speech. The psychologist was very impressed with his mental development and commented on how smart he is. She recommended we make him a book with his surgery photos and before and after photos. I will pick up the prints tonight and get that together for him. This Friday we are also going for a consult at Lurie Children's Hospital. I know a few families that already go there and they love it. As much as Shriner's impressed me, I think Lurie will give us more personal attention, which is what I'd prefer.
 We FINALLY got some snow! Jesse and I made a snowman. He was a little sad the next day when he melted a little and his face fell off.

It's stuff like this that makes the rest of it all worth it. This beautiful little soul keeps me going though it all. 

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