A tough week or so

It has been a bit of a tough week around our house. This past week Ethan's "eating and drinking strike" hit a new all time low and we started off really thinking that it might be time that we have to start seriously talking with the doctors about when the right time to place a g-tube would be. Ethan has always had "issues" when it comes to eating and drinking, and has gone through numerous "phases" when he will just stop eating or drinking, but never really both at the same time for any real length of time. We know that if he stops drinking we can keep him hydrated and nourished by spoon feeding and if he stops eating we can keep him hydrated and nourished through his bottle -- but what is scary for us is when he refuses to do either. This is what we were facing this past week. Ethan hasn't really eaten well in months, but over the last week or so it had just gotten worse and worse and worse.

So, on Monday I began documenting all of his intake again. It is one thing for us to "feel' like his intake is down, but we really needed to know exactly how much, etc. I began talking with my network of special needs mommas -- local friends as well as my GFPD family. With their help we talked through lots of the issues that Ethan has about food, the cognitive, fine motor and oral motor skill delays that impact Ethan's ability to eat, the stress of the situation, his behavior during meals, and possible things to try, etc. The majority of children with PBD-ZSD have some issues with eating, although not all. Most of the things mentioned were things that we had already tried and/or are things that we do not have the ability do with/for Ethan at this point in time. The brainstorming of ideas and the support that I got from these women was amazing as they shared their own struggles and successes with something that so many take for granted ---- feeding your child. One thing that came back up several times was the concern that Ethan might be having reflux. Ethan has been off of his reflux medicine for nearly a year, but by Wednesday we were ready to do almost anything, so we put him back on it. We knew it couldn't "hurt" to try. I was sure it wasn't reflux. We've never had any real sign of reflux. Ethan was put on the medicine shortly after birth because of his difficulty eating and gaining weight, but he's never been a kid that really spit/threw up so we took him of of it nearly a year ago since he was eating so well. While there is no easy way to know if Ethan has indeed been suffering from reflux, we do know that by Friday Ethan seemed to be eating a lot better. Not great, necessarily, and his behavior in the high chair is still pretty horrible, but he was opening his mouth again for the spoon and even clapping his hands (signing "more") during meal time for the first time in weeks!

So, of course I feel like I need to pin a ribbon to myself that says "world's worst mom" because if it is indeed reflux then I could have been giving him medicine the last several months that would have given Ethan some relief, but minus some invasive testing that I do not want to put Ethan through, there is no way to really know, since he can not tell me what is wrong. Ethan's lack of communication continues to be one of the biggest daily struggles for me. He has no words, and very few signs -- he claps his hands, he can sign "eat" and "milk" although he does not use them often. So, besides crying there are very few ways for him to "tell me" what is going on. We continue to work with all of his therapists to try to give Ethan every opportunity to develop his communication --- sign language, talking, using objects, etc. but at this time we aren't seeing any improvement. On top of all of this is Ethan's newest "development" hair pulling. He is pulling his own hair so hard when he gets upset/frustrated/mad that he is pulling it out! Besides holding his arms and hands where he can't do it, which in turns makes him even more upset, we haven't been able to stop it. So, if you are someone who sees Ethan in person, you'll know why he is now missing more of what little hair he did have.

Thankfully, he is at the moment eating and drinking better. Still not great, but for at least the time being the scare seems to be over. We know that this will most likely continue to be a constant battle, but we feel so blessed that for now perhaps the reflux medicine has helped.

In addition to the really tough week or so in the feeding department Ethan is sick again! I got the call on Thursday while Ethan was at STEPS to come get him because he was feeling warm and was very flushed and lethargic. So I brought him home and he took a good nap and by the end of the night the yellow boogies were here in full force. We've been fighting them all weekend, and while at the moment it seems like we may be gaining ground in the boogie battle, we are far from winning the war.

There are so many frustrating things about the impact of PBD-ZSD on Ethan and our family and I will admit to having days in which I am completely overwhelmed by it all and on other days I think I've at least got it mostly together --- when Ethan gets sick, even with a common cold, the reality of PBD-ZSD hits me hard. In addition to all the challenges it causes Ethan and all the things that it steals from him and us as a family, I get so mad that a simple common childhood illness can very easily and quickly become disastrous for my sweet little boy. So, if you don't see Ethan and I again until Spring, you know why -- we are hiding from the germs. We are praying that this will be the winter that we are able to not be hospitalized. It isn't that we don't love the nurses on the pediatric  floor at St. Mary's but still, all things considered we'd really be okay not visiting with them this winter.

Since Ethan isn't feeling well he refuses to keep his hearing aids in, which is adding another layer of frustration to daily life in the Marshall house. With his hearing aids in he can hear pretty well, but without them he can't, and so hearing our voices, his toys, etc. aren't as enjoyable. I can't wait for him to feel better so that he'll keep those hearing aids in again! I want him to have access to the sounds around him.

Thank you for your continued prayers. We'll continue to keep everyone updated.





Comments

  1. Sending lots of prayers your way. I know it has to be very frustrating for something that seems so simple to be a big battle. I hope the medicine will help him and he'll be back to eating again. You are great Mommy doing everything you can for him. :)

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