The CDD journey: Gavin is getting worse

Gavin is continuing to get worse. So far this morning he has fallen both up and down the steps at least twice. He has also fallen off the couch and out of chair. The other problem is that he is literally dropping things the moment he picks them up. I don't know what to do anymore. Everything is going down hill quickly or at least that's how it feels. I have been trying to keep Gavin for walking around because he is just hurting himself. It's frustrating for him but I have to keep himself safe. I wish we could get to the bottom of this and figure out what the hell is going on. I can't explain what it feels like to helplessly stand by while your child deteriorates…

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OMG…..and it’s only Monday

We just got a call from the pediatricians office. Apparently Gavin's blood work came back from the gastro. Now we have another problem. His immunogloban (spelling?) G and M are very low. We were told to call Akron Children's Hospital and get in to see the allergist. What the heck does this mean? We can't seem to find anything online about this. We called the allergist and she wants him in on Wednesday morning. Fan-freakin-tastic, another rushed appointment. Remember what I said the other day about we're used to always having the other shoe drop? This is exactly what I mean. We had nothing going on and that was nice for a change. However, the powers that be just don't seem want us to have a break. WTF......it's only Monday…

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Always expect the unexpected

Today was supposed to be a relatively relaxing day. Emmett and Gavin have therapy this morning, well Emmett already had therapy this morning. Anyway, Gavin slept in as he is prone to do lately. When he woke up he seemed fine. However, from where I was sitting I only saw the right side of his face. Gavin started getting anxious and I wasn't sure why. I asked him if he was OK and he turned to look at me and this is what I saw. What the heck is this? When he came home from grandmas yesterday he had one little red bump on his jaw It just looked like a mosquito bite. However, clearly something has changed as this is definitely a problem much bigger then a simple mosquito…

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My mission to find sensory friendly socks

Locating sensory friendly socks for Emmett I under took a very important mission today. My mission was to locate socks that Emmett would tolerate. In other words, I needed to locate sensory friendly socks. You may recall the struggles we have with Emmett when it comes to wearing clothes. Emmett has significant sensory related issues that go along with the Autism. Basically his body misinterprets sensory information. In Emmett's case, clothing can often times be very uncomfortable and even painful. The most common issue Emmett struggles with is socks. He simply cannot stand the feeling of socks on his feet. This translates into a nightmare almost every single time we need to take him somewhere. There is a ritual we must undertake if we hope to get him dressed and out the…

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CKP Heating and Cooling: Paying it forward

This is part 2 of my previous post: Betterment Helps the Lost and Tired family. "So we figured that central air would help to make their lives a bit easier and honestly, ours as well. The truth is that I had actually forgotten about this whole thing because we had our hands full with everything else we have going on all the time. However, last week I received a phone call........" CKP Heating and Cooling: Paying it forward I mentioned in the previous post, linked above, that I have kinda forgotten about all of this in light of what we are in the middle of with Gavin. That was, however, until I received a phone call from CKP Heating and Cooling. They called to schedule an estimate and we did just…

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An Emmett update 7/29/2011

With everything going on with Gavin I neglected to mention what was going on with Emmett. Next week we are meeting with the pediatrician. Emmett has been running fevers quite frequently and for no apparent reason. He wants to run some bloodwork and then discuss what type of specialist we need to see. These fevers last about a week and never seem to have a cause. We used to think he was getting sick due to being at school and sharing toys and whatever with the other kids bit it still happens and schools been out for a while. He has food allergies and maybe this is related to a new allergy? Does anyone else have issues with random fevers with no other symptoms? - Lost and Tired Post by…

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Autism’s little quirks

I have referred to Autism's quirks on a number of occasions. So I thought that today, I would share one of Autism's little quirks with you. For this post, I'm referring to Emmett. I try to allow the kids in general to get as much hands on experience as possible. Sometimes it's sorting laundry or feeding Maggie. Sometimes is repairing a toy or something else around the house. Today, I had Emmett help make his dinner. He wanted chicken nuggets so I brought him the bag of nuggets and a plate. He very carefully and deliberately choose his nuggets and placed them in a very specific pattern. He was very particular about this pattern and he did his best to make sure that nine of the nuggets touched. Emmett hates…

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God grant me the patience…….

I have been reciting the Serenity Prayer to myself all morning as Gavin is in rare form today.  He's not misbehaving or anything like that but he's talking about random things in a nonstop manner.  As terrible as this sounds (and I know it sounds terrible) Gavin is basically think to breathe anymore.  I don't know how else to describe it. I think Lizze said it best the other day.  She said,  "Gavin is chronologically 11 years old and emotionally 3 or 4 years old.  It used to be that It used to be that Gavin would mostly act 11 and sometimes act 3 or 4. Anymore however, Gavin is mostly 3 or 4 and only sometimes acts like he's 11.". Does that make any sense? At the risk of sounding…

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