We’re Back

Yesterday morning, Cybell and Catalina headed back to Chile and slowly things in the Andrew household are returnng to a routine. I’ve really missed blogging and am looking forward to getting caught up.

There’s lots going on in our world. We have a gazillion meetings that we put off from August to September because of company, so the next 2 weeks are jam packed with appointments. Today we are meeting with Nathan’s teacher and his team at the school. We will be discussing communication. We got his dynavox with eyemax ready so it’s time for us to start using it.

We are also getting a lawyer involved in the process. Ronna who has been working with Nathan feels taht the school should’ve bought him the communication device and that they should be doing more with him communication-wise. At the IEP I asked them to hire a private speech therapist with experience with communication devices and they said no. So I realized I’d need to get a lawyer involved. We hired Sharon Grandinette and are in the process of getting her familiarized with Nathan and his situation. Tomorrow will be the first meeting with the team and then we will schedule another meeting with the lawyer to be involved. I love Nathan’s teachers, they are amazing, but I think the administrative staff needs to be more proactive and I want the lawyer to be involved to make sure everything is happening correctly for Nathan.

On another note, I have to admit I am worried. For the last couple of months we’ve had issues with Nathan throwing up. He is congested a lot of the time and the congestion seems to cause him to throw up every once in a while. He’s so skinny already, and watching him throw up after getting a full meal into him is just awful. For the first time I am actually consdiering the possibility of a Gtube.

The thing is, Nathan loves to eat. He loves food. His eyes light up when he sees food. The cunnundrum is that he loves food that is bad for him. I think a big part of the congestion and throwing up cycle is that we’ve been off his diet. We wanted to fatten him up so we were giving him whatever he wanted. But breaking his diet causes the congestion which causes him to throw up so we are then back at square 1. He is not so excited about eating gluten casein free food. So he doesn’t eat as much when he’s on his diet. And he doesn’t drink enough water. I was looking at a guide to how much water people should be drinking and he is WAY below where he needs to be. Which brings me back around to the thought of a Gube. We could really use some prayers regarding this issue. I am getting back on my super proactive gotta figure this out mode and see what we need to do to resolve this. I am going to take him to a DAN doctor again to have all of the testing redone so we can start back on square one with his diet.

Today Nathan did the first of the 10 session Rolfing series. He’s been seeing Tom, our Rolfer, for about 6 months now, but he was doing a hybrid movement therapy session with him and not the proper rolfing routine. I decided to go thorugh the 10 session rolfing series myself and boy oh boy is it stunningly incredible. I’ll write a separate post about it. So I insisted to Tom that I want him to do the straight Rolfing protocol with him, which we started today. Nathan loved it! He enjoyed the deep pressure and he loved everything Tom did. By the end of the session his body looked and felt different. It was pretty amazing.

Then on the car on the way home, out of nowhere Nathan started throwing up. He threw up most of his lunch. Typically after he throws up he goes on with his day as if nothing had happened. But today he cried and cried and cried and it just broke my heart. I could tell he was in pain. He got really hot after throwing up, so I took off his shirt and went outside with him where there was a cool breeze. Then I noticed he got cold and clammy and really pale. So I held him and rocked him on the hammock and a couple of minutes later he was asleep. I put him down in his room, waiting for him to wake up. That was at 4pm. It is now 1 am and he is still asleep. And I can’t sleep because the whole incident has me pretty freaked out. I hope we can figure out what’s going on soon and get him back to his healthy happy self.

On happier news we got to meet some wonderful friends from New York who have the cutest boy with CP on Sunday. We all hung out at Disneyland together. It was a blast! So my blogging will be spotty for the rest of this week as we are going to hang out with them a couple more times this week.

This week we also have an appointment with Dr. Kenny, a wheelchair fitting as we try to get a new wheelchair for Nathan, an appointment with a healer who works with sound waves, and Belle’s first official swimming class.

So now we start 6 weeks of “life as normal” and I am looking forward to getting ourselves into the normal rhythm of life!

Comments

  1. So sorry to hear about Nathan not feeling well. When I read this post I thought that – since you were already considering her anyway – now might be a good time to consult with Kelly Dorfman. Not sure if she could help, but it might just give you another option to consider while debating the gtube.

    It seems like you are starting the school year off with a bang! And I hope your lawyer helps Nathan get the services he needs.

    Horray for all the fun you are having! It sounds like there is still plenty of more fun planned, too!

  2. Well, I know how you feel. Charlie loves his carbs even though I know that they make reflux worse. Personally, I hated the g-tube, but many families feel like it is a god-send. What kinds of foods does he like to eat? Is the gluten or the casein harder to avoid? There may be middle ground that makes it easier. For example, Charlie loves cheese, so I let him have cheddar since it’s got the lowest lactose levels.

  3. http://maria says

    sorry, i don t want to be cruel, but check the shunt …symptoms match a shunt disfunction…at least at my boy does…I know the feeling too well…hope and pray it is not this…hug for nathan

  4. I agree with Maria please get that checked out, but you are mommy and I know you know him best. Brandon done the same stuff and that is what it was, now on to the g-tube you know how I felt about it and fought on it and in the end it is much better for him he is healthy and happy with it. ITs real easy and you dont have to always use it just when you think he needs a little more umph. I would think about it and pray about it but I am concerned about his throwing up thats not like him. I miss you I hope you start calling me or txtin me again because I miss my friend so much is going on that I have not been able to talk to you about. GOD BLESS YOU and I love you and Bella and Nathan.

  5. Boo. Sorry to hear that Nathan isn’t feeling well. It’s hard not to give our kiddos the foods they want. Sebastian loves chocolate milk shakes but he can’t have chocolate or milk due to the reflux and it makes him gassy. And he’s pretty skinny too but he also loves to eat. Keeping you guys in my thoughts and prayers.

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