The pieces are coming together...

....to Jedidiah's health problems. At least we seem to have pieced some together. I had written a couple of drafts now about this subject and I let them sit in my box. It is hard to post about a possible answer to Jed's issues, knowing that right now we are only in the "theory" stage, none of our ideas have been tested yet. However we have never at anytime had puzzle pieces fit like they do now. So as this blog is meant to be a journal of our family's journey through life I thought that I would share this information, even if it does end up being nothing. I am partly excited and partly frustrated/hesitant. Obviously if we have the answer it will bring such relief to finally *know* what has been wrong with Jed. And the other part of me doesn't want to dissappointed....again.....about another "lead". I told my sister the other night that I was beginning to think all of this (Jed's issues) have been in my head! Seriously, when most people see Jed he looks like a "normal" kid. Smaller than he should be, and he's got one big noggin, but normal. He is a very, very happy little boy. I think that fools people into thinking that he really doesn't have anything wrong with him. But anyways back on topic. The puzzle pieces started to fit like this:

Jed's homeopathic doctor has recently been saying that he believes Jed's central nervous system (cns) has been affected. Affected by what he didn't know. In homeopathy you treat the symptoms in order to engage your own body's healing systems to correct what ever problem you have. Now obviously homeopathy can not help everything out there that a person might be experiencing. We have continued with it because so far it is the only thing that we have seen results happen in Jed. If the problem is what we think it is I am not sure how far homeopathy will take us.

The next puzzle piece came from a short talk I had with a lady who is a holistic health care person (not sure of her exact title). We will have a visit with her in early June. But just from the short medical history that I gave her (Jed's "reflux", sensitivities, lack of weight gain...) she told me right away that he didn't have reflux but that he had a central nervous system problem! OK, we have two people conferring on the problem being his cns. Her theory is that at some point inutero he lacked oxygen. That is a big possibility as Jed's placenta was VERY small and was starting to break up by delivery.

The third piece of the puzzle is Jed's speech therapy. Jed was evaluated for Apraxia of Speech this past Thursday. His therapist is going on vacation this week, so we'll have to wait two weeks to find out what the results were! BUT here is what did happen during the test. The therapist asked Jed to stick his tongue out in various ways. He was highly motivated to do so as she wouldn't give him the toys he wanted until he did. His back was turned to me during this time so I didn't see what he was doing. She then went on to "play" with him, trying to get him to say certain sounds. Then she asked me if he could say certain things. Everything she asked was something that Jed couldn't/ or doesn't do. EVERYTHING! She ended by saying...."hmmmm, interesting" (those are usually not good words to hear on a test), then proceeded to tell me that Jedidiah was not able to move his tongue in the proper ways when she had asked him to earlier in the test. So basically he failed every single thing. Now, that still doesn't mean he has apraxia, but clearly we have to think that it is possible. It may be that he has something else, but I won't know for a little while. For those of you who may not have read my post about the apraxia, it is a condition in the brain where "for whatever reason" the child knows what he wants to say, but it does not come out of the mouth as they intended, which is a cns problem.....read that again, it is a CNS problem.....hhhhmmmmmmmmm a few too many puzzle pieces lining up.

I asked my sister how his stomach issues could be a cns problem. I don't have the energy to write out in full how it is related but here is my best shot at a briefing on the matter. Pretend you are supposed to have 40 nerve endings in your tummy. Somewhere in Jed's inutero development that process of making nerve endings got cut off, so he only has 20. So when we try to increase his feeding volume because his calorie needs have gone up and I increase it by only two teaspoons (I usually do it less than that), it is too much for those 20 nerve endings to handle, because they are being overloaded. Trust me when I say I explained that all VERY poorly, but I hope you have at least a small picture of the possibility. This would explain why Jed throws up if he laughs or plays after a feeding, or why he throws up if he has an illness unrelated to a tummy bug. It explains ALL of Jedidiah's issues : feeding, sensitivities to sound and touch and his speech. ALL of them.

Whew! I feel out of breath just typing all of that. It has been a bit of an emotional roller coaster these past few days just thinking about this. We will have quite a few different visits to various doctors coming up to check up on this theory. First I will talk to his homeopathic doc on Thursday about it all. Then see the holistic person the following week. Next we will see his regular family doctor to discuss this later in the month at his well child visit. In the mean time I need to make an appointment with a neurologist. It usually takes months to get in so I need to call on Tuesday. If this pans out to be nothing then I can cancel it.

So what will this mean if we are right? Good question! It means we have a lot of work ahead of us. And if we are wrong it still means a lot of work ahead of us :-) Basically we will have to find a way for Jed to grow more nerve endings. I can assure you that is not an easy task. We will see what the alternative docs have to offer us. My brother-in-law came across someone using a natural supplement that is supposed to increase your own stem cell [production, which would help Jed make more nerve cells. However we are in a bit of a catch 22. Jed will need better nutrition for his body to make those cells. I'm sure you see that is a HUGE problem with Jed. So we may have to do other therapies to get his body, even if temporarily, to accept the nutrition so that he can make those cells. This will be a long process. But time right now is ticking. He is still young enough to have enough growth potential to make the cells he will need, but at some point he will be outside that window. So we need to get things in motion right away. If Jed's speech issue is a cns problem we will have a lot of work to do in that area as well. We really need to get him learning the flip chart talking board and sign language. Both of these skill not only will help him to communicate in the way that he should be, but will help his brain to grow proper pathways, or alternative pathways to help with his speech. By the word 'communicate' earlier, he should be speaking verbally, but right now it is important that he learns to tell us how he is feeling, to tell us about things he has done, in any way possible. I have really been paying attention to what Jed understands and he doesn't understand concepts of time like, 'later, earlier, yesterday and so forth. Also, during one of his evaluations I was asked if Jed could follow simple commands. Yes, I said. But now I realize that with a lot of those commands he had to be shown how to do them. And the other day we had a situation that really hit it home. Jed came to me asking for a banana, using sign language. He saw his sister with one. We normally keep our bananas on the counter, but we ran out and had bought some earlier, and those new bananas were on the table in the grocery bags. When I told Jed that he could have a banana he ran to the kitchen counter. He ran back asking for a banana again as he didn't find them. So I told him, "Oh, the bananas are on the table in one of the grocery bags." He ran in the kitchen....back to the counter. He ran back to me again, signing banana. I again told him they were on the kitchen table in a bag. He started running to the kitchen and started running past the table. I told him, "No, the table, go to the table Jed." He went to the table and stared at it. I told him the bananas were in the bag on top of the table. He ran back to me. I told him to go to the table where Mommy eats dinner. Go, to the table where mommy eats dinner (yes, I had to repeat myself). He walked slowly to the table and stood there. I told him the bananas were in the bags, right there! I told him he could see them sticking out of the bag. He walked closer. By this time one of his sisters came by and grabbed him a banana. An almost three year old (in one month) should have easily been able to have followed through the very first time with my instructions. He couldn't do so after, what, ten times?!? So I sat there and really thought through Jed's ability to follow directions, particularly more than one step directions. And I think he really does a lot of things because he has been taught and out of routine. If I ask him to get me his shoes he can do that because he knows where they are....but I had to show him that a few times at first. If he wants juice I will ask him to get out a cup, again he can do that because I had to teach him first. You should not have to teach kids these things. But with Jed we have had to. It takes between three and five repetitions for him to "get it". Sooooooo it's not all in my head. I wish it were, but it's not. Thankfully he is young and we can work on all of this. It will be a lot of work, but if we are right, then the work we do will finally bring us closer to healing Jed. And that would be a very good thing :-)