When do you give UP?

[Anonymous]

Lauren thank you for your insight. Christian stopped growing at 6mos, although he was not missing any milestones, he just wouldn’t grow. My beliefs were that if the skull didn’t grow, the brain wouldn’t have any place to grow either. The g-tube was placed in January of this year – only 2 1/2months ago. He started taking his solids and bottles so much better after the tube was placed – he only gets continuous at night. We spend the days having “fun” with foods.

The speech therapist that we see is great, she just plays with him if he is very oral sensitive that day. I hate to give it up – but at the same time its these struggle weeks that really get to me. We have only seen the OT twice now and I am not terribly impressed with the brushing technique or the compression that I have seen…perhaps it is just too new to me and it will grow on me. Christian’s struggles started with pain associated with bottles, moved onto vomitting solids through the nose, and I think that pain is vivid and causes him to be guarded.

My comments on the antidepressants – were a personal for me – I have been through so many and they all dull me down. I have now been off of them for 5 years and keep going back/forth trying to decide if I perhaps need them again. I am fearfull of the dulling down – I need to be strong right now. Perhaps my chemical makeup has changed too – give the pregnancy.

I did pick up the out-of-sync child book and have only made it about 30 pages in – too busy playing to read. But I will get through it soon.

I will express all my concerns with the therapists on Friday and get their take on it. I know they can see the frustration in me…they definitely see the frustration in him. He just wants to do it in his own time. And hey – we just got back from Arby’s – he love Jamocha shakes – whatever it takes for the calories right?

Thanks for your insight and guidance.

[Anonymous]

Laura, I hope you don’t mind me asking, but what did they do to assess that he has SPD? Was it more than just the feeding aversion?

BTW, good luck in your decision. For me, it was important to find a therapist who understood about feeding aversions from reflux, because I believe that they’re a special circumstance. I, like you, also believe that the negative associations from painful feedings cause a cycle of not wanting to eat to prevent pain. The first therapist that was recommended to us did not understand this, so now we are seeing an ST, but she’s public not private. I’ll let you know how things progress.

I really hope that your therapists address your concerns, and that things improve for you guys soon.

[Anonymous]

I hope things do get better, Laura!! I know that after talking to our GI this week & finding out we are not in that rush to get Emma weaned off the tube, a big weight has been lifted. Now we can just be happy she’s consuming anything…be it 2 chips or 3 sips of something. All the while encouraging her to eat more, not attempting to force it on her. It’s no longer about having to consume those 1000 calories a day! So, if they feel that’s the case with Christian too, you may have a lot of that pressure relieved too & then be able to slow things down.

I think that will help tons. Thankfully, he does have the gtube, so this time of him not eating does not become an emergency (dehydration, etc.). The frustration can really be hard, trust me, we’ve been there. Emma on a few occassions has had ‘mini’ regressions…she’ll forget a skill she learned, sometimes for a few weeks. Or, she’ll just get stuck on something & not go further. Then there are the set-backs too. It is so stressful. If you are not thrilled with the OT & brushing, hold off on it. Doing something you don’t feel comfortable with won’t help any. You know your son the best, & if you don’t see the SPD issues, then they may not be there. Or, they could be strictly related to his oral motor defensiveness. I will tell you, I too was uncomfortable with the brushing when we first started–it seem awkward & strange to me. Then, after a few weeks we saw some changes in Emma & well, I was encouraged. Plus, after a while, it becomes second nature. Remember you know your son best & you can only do what YOU feel comfortable with. If you need a break for a month, or to go less often, then do that. The state program may be better for you, as they come to the house. That may not wear you down as much. Whatever you decide, I think talking with the therapists on Friday will help.

I will tell you, as Christian gets older, if he is still in therapy, he will start to like it (most days! LOL!). In the beginning, Emma would scream nearly the whole 45 minutes we were there. Emma now signs “play” when we go to therapy & she has fun. The act of going to therapy itself really does become more pleasant!!!

I wish you LUCK with all of this & really hope you can come to a comfortable position with this. Whatever you decide to do, remember it is what’s best for Christian (Mommy really does know best!!). You sound like an amazing mom & are a wonderful advocate for Christian, & whatever path you take, I know it will all work out. I’m praying you find some peace as well, & that you can find some R&R time too. I know the challenges are two-fold when you have 2 kiddos. Hang in there. There are plenty of supportive & kind women here that will listen to you whenever you need it. Sending lots of comforting (((HUGS)))) your way! Praying for you & your family.

P.S. So, maybe Emma & I should head to Arbys! The Jamocha shake aye??? We’ll have to give it a try. This week, she’s into nibbling on Doritos, Lime & Pepper (yes!) chips, marshmallows, sour candy stuff, & nachos. I call it the “College Diet.” LOL!!!

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