Sunday, July 5, 2009

The forever struggle

Yes...It's eating.
Nathan can't eat and has to be tube fed. It seems like a life curse. I keep trying and all I hear from everyone is that these things take time. It takes time to learn how to eat. It will be a long process... blah blah.. tell me the reality already. Am I just living in some dream world because it kind of feels like it? Will my son ever eat by mouth? 3 years and no real progress.
Nathan has a huge aversion to food and it's pretty hard to push him ( but I do or at least I try) to taste or get anything in his mouth. Other than Nathan touching food and occasionally or should I say accidentally putting something to his lips, I have seen nothing else. He shows no interest in food and I also believe that he doesn't know what it is.
These pictures are from this morning, while once again trying to get him to eat.

Yes... he touches food, and this is good
If there's a bowl he'll put anything in it because it's his favorite thing to do

then he discovers the texture isn't so great and he'll

make a face
but he'll continue to play with the bowl
because spinning bowls is an obsession for him

Our little grabber doesn't grab everything... it's like he knows. Look at that face! I love that Face but I'm tired and frustrated, truthfully I'm sick of everything.
When Alyssa was a baby I didn't analyze every little thing so why do we do it with our special needs kids? Some very good friends of mine deamed RTS to be REALLY TOUGH SHIT. Today I couldn't agree more. I am frustrated beyond belief.

Last week we met with our social worker because I had questions about Nathan and school, he will have an aid but a reccomendation to which school can not be made because they are not allowed to make recommendations. GRRRREAT! So the therapist and Dr's are the experts but I can't get a reccomendation for which school would be the best for my son. That's just perfect- That's like going to a Dr. (an expert in their field) and the Dr' saying that they can diagnose the condition but can't recommend treatment! It's ridiculous!
AT the end of August we are meeting with all of Nathan's therapist and were going to put together another action plan. I know this will be good but I kinda feel like just shrugging my shoulders and saying "whatever"

I needed to vent and this is where I can do it. My blog keeps me sane and keeps me from having huge therapy bills...
I will add for those of you that have been asking me about Nathan height and weight that he weighs 27.4 lbs and is 3ft tall. His head circumference is 17 1/4 inches.
I had a quick look at the RTS growth chart for boys and if I read it correctly, this means that he's at about the 50% percentile for both height and weight. I'll have that confirmed when I get a new pediatrician.


  1. So I guess it was one of those RTS days... I feel your pain my friend! We try so hard to do everything we can for our kids and sometimes everything just isn't enough. Progress is SOOOO slow and it is completely frustrating. Try to "let go" of at least one thing that you stress about this week. Give it up...and let it work itself out. I did this with AnnaKate's walking. It sounds horrible but it came in it's own time. Keep your head up..better days are on the horizon!
    Love you!
    Kelly W.

  2. Hugs, Christine.

    Does it help for me to say, "Nathan will eat!"? Because I know he will. And when he does, it will be the most glorious success. And then you will eventually take it for granted and only be reminded once in a while that he used to not eat.

    He will eat. And it will be because of you. You will be able to take the credit when he finally does eat, because it will be you who figures out how to get him to...whether it's finding a therapist who understands him, or figuring out the magic potion that first gets him interested in swallowing something, or just giving him the time to figure it out on his own...or whatever it is, it will be because you know him and love him better than anyone else on the planet.

    More hugs!
    Cindy :)

  3. Oh Christine, I feel your pain today! He will get there, I know that he will. I am not sure how much Nathan is tube fed per day but one thing that we have done with Will is spread out his tube feedings so that he can experience hunger. So Will is tube fed three times a day (breakfast, lunch and dinner) but recently we have pushed his dinner meal until before bed in hopes that he will want to "eat" dinner with the family. At all meals Will is put into his highchair and at dinner he is not hooked up to his tube, we give him what we are eating. Then we tube feed him his last feed before he goes to bed a few hours later. Maybe Nathan isn't putting the two together, feeling hungery and putting food into his mouth. It's a thought...

    Love ya girl!

  4. It feels good to let it all out sometimes huh? I know I feel somewhat better afterward! I have the same feelings as you regarding Austin learning to talk. He's 7 and still cannot say a thing. His humming drives me batty!

  5. Im sorry. Waiting is so hard, especially when you arent sure if its going to work. Eating seems to be the BIGGEST issue with our sweeties. Just keep exposing, it will come. Thank God for feeding tubes! Even though we hate them.
    Love you friend.....

  6. I agree with Kelly. I have had to give it up too.. I still work with Noah on his walking but I believe he will do it when he wants to. It's so hard to let go though and I feel so guilty sometimes. Like I am not doing enough but honestly I know I can't do more than what I am or have done. Hugs.

  7. Hi Christine

    Ow. I feel your frustration. I don't really know what to add to all the amazing advice you have already received from the previous "commenters".

    I also have had those "giving up,letting go,accepting" moments, where it does feel more like defeat than release. But it does bring some freedom once I have worked through the guilt. And Matt always seems to respond to my taking the pressure off.

    Just wondering if you have had some input from a SLP about how to desensitise Nathan's mouth. You are welcome to contact me if you want to hear what we were advised in terms of making Matt more open to putting things in his mouth. :)

    BIG HUGS!!!