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Tuesday, October 29, 2013

Did I Really See That?

Today Sophia saw her feeding specialist. Sophia doesn't want to eat anything that has to be chewed. Actually, the only thing she will eat is yogurt and she will drink PediaSure -- for the extra calories she needs. We work on trying to get a few tiny crumbs into her mouth but most of the time she will have nothing to do with that. She will turn her head and cry and fight you. Today her therapist was working on getting some crumbs into her mouth by putting them in applesauce and Sophia was doing ok. Then she decided to try to get her to actually take a small bite of the veggie stick she was using for crumbs. Sophia was not interested. She tried again and after some work she got Sophia to take a small bite -- and I mean small. She worked on getting Sophia to take another small bite and after some time had success. Then Sophia's therapist put the rest of the veggie stick on the tray and turned to get something else. I watched as Sophia took her hand and with very jerky movements tried to pick up the veggie stick off the tray. I didn't think she could get it but she did. Then I watched with amazement as Sophia actually picked up the veggie stick, and took it up to her mouth and actually took a small bite! This was amazing! Really amazing for her. She doesn't pick up small things and when she does pick something up she is very uncoordinated and usually ends up just tossing it or dropping it. The fact she picked it up and got it to her mouth was amazing enough, but for her to take a bite was unbelievable. If you have ever had a child with real feeding issues, I know you will understand. Sophia will not let anything into her mouth without a fight -- except yogurt and sometimes that is a struggle. We work so hard to get her to eat and she fights us so hard. For her to actually put something in her mouth is beyond amazing. Now, she only took two bites and then would have nothing to do with it and refused any more bites. But, she did it so I feel like that means she will do it again one day, and maybe actually eat something besides yogurt and drink PediaSure. I have an amazing feeding specialist! She has worked so hard with Sophia. 


















































12 comments:

  1. That is amazing! You know, she has always been beautiful but the difference in her recently is amazing. She is just stunning.

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  2. Sharon, That's wonderful! My preemie had feeding issues too. I remember being in tears trying to break those little puffs into 3 pieces. They would just disintegrate into dust/crumbs and I'd be lucky to get one little crumb to try to feed her. She couldn't eat anything bigger or more dense such as a piece of a cheerio or she'd gag, throw up and lose the bottle or what ever other liquids she had eaten. It was so exhausting and stressful. Her feeding specialist was also so helpful. We finally found a nuk brush that she would sometimes put in her mouth and one day around 18 months figured out she liked the taste of ketchup/marinara sauce. That was a turning point where she tried to actually chew/eat something. You must be feeling so hopeful. I understand and am happy for you!

    Sue H.

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    1. Sophia is the same way -- a Cheerio would never even cross her lips. We are lucky to get crumbs in her mouth and then she usually spits them out. Feeding issues can be so hard. We work so hard to get her to take a couple of crumbs and then if we are lucky she won't spit them out. The weird thing is she will eat yogurt -- only yogurt and nothing else. She prefers to just drink a bottle and some days refuses even the yogurt. She does drink her PediaSure very well.
      I have no idea why she hates to eat. I know she must have only had bottles in the orphanage. I don't know if any of this has to do with her stroke or brain damage.

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    2. I understand! Our Emily would eat yogurt and some other baby liquid purees. I remember at her first (and second) birthday that everyone kept asking if we were going to give her cake and it was so sad because it wasn't even an option and people just didn't understand and kept telling us to have her try things. Try a bite. Well, she can barely eat crumbs, she couldn't eat cake! Like I said, one day she tried marinara sauce on the nuk brush and from there we were able to soak larger pieces of a puff (not a whole puff!) in marinara and build from there. Our feeding specialist kept telling us that just because we wouldn't ordinarily think to eat marinara on literally everything didn't mean that we couldn't do that for her if it helped her progress. Two years later and she still has some issues but we are past the days where she'd gag and throw up or start choking on the tiniest things (and I mean tiny, so I know what you mean!). We really never got an explanation for why this occurred. She had a hard time drinking as a little infant but got past that around 6 months. We tried cereal at 4-5 months, etc. and kept offering things in those early months until about 6-7 months when we realized something was seriously wrong. She doesn't have any other major medical issues that we are aware of at this time other than being a preemie (3 lbs., stopped growing at 30 weeks).

      Sue H.

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    3. Funny that you mentioned that marinara helped your daughter accept some bites of food as our feeding specialist has been talking about spices and sauces maybe helping Sophia. I think I will try the marinara with Sophia. It is worth a try.

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  3. Hooray for Sophia! Little by little she is joining your world. I taste here a smile there, it is coming. In some of the more recent pictures it looks like she is looking at you. Does she make eye contact with you? She is just beautiful and it is wonderful to see her changing. Thanks for sharing your family.

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    1. She will make eye contact but only for a couple of seconds. She almost immediately looks away. But, I guess it is a start.

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  4. That picture of Sophia and Caroline is beyond precious...so very beautiful!

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  5. So happy for you and Sophia! Each baby step is cause for celebration and picking up something and taking two bites is a huge success! Our son had/has feeding issues although not as severe as Sophia. He used to really hate anything that wasn't a soft, smooth, runny texture. The way that he first learned to chew was using a fresh food feeder like the following: http://www.toysrus.ca/product/index.jsp?productId=3081978 We started with soft fruit like really ripe pear in it. (I found banana really yucky to clean out of it, so avoided that but maybe I'm just banana-cleaning challenged.) I would mush the fruit a bit so that it was already juicy on the outside to help motivate him to put it in his mouth. When I first tried getting him to use it, he wanted nothing to do with it. I waited a few weeks/months and tried again, and he loved it. Unfortunately I have no idea what changed in between. At first he would just suck it but eventually figured out how to chew on it and got to the point where we could put a piece of carrot in it and he would munch it up. Anyway, I know different things work for different kids, but I thought I'd mention it in case it's helpful now or down the road. You could even put yogurt in it to start.

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    1. It is definitely a slow process for Sophia as it is almost impossible to get anything into her mouth -- except she loves her bottle. I looked at the feeder you mentioned and I may give it a try. You never know, she may actually try it. I have seen them before but never even thought of using one for her -- thanks for the idea.

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  6. That's wonderful!! The last photo of both girls is beautiful.
    Side note on the meshy feeder thingies-watermelon works brilliantly in them, and it is easy to clean :)

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    1. Thanks for the tip for the meshy feeder -- I still have to get out and buy one.

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