Sunday, May 24, 2009

The pieces are coming together... 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 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 :-)

Tuesday, May 19, 2009

A post of pictures

These are not in any particular order. Just wanting to catch up on some photo sharing.

This was my Mother Day's tea party. The girls baked some really yummy oatmeal cookies. they also made lemonade. So I guess it was a lemonade party :-) Saoirse was the Manners Police! Too funny. She kept telling us what we could and could not do. Things like, no sniffling, no talking with your mouth full, hold your fan like this.....etc.

A picture frame as one of my gifts. This was made by Moira.

A wonderful homemade card. I just love all the homemade gifts and cards!

Jonah enjoying the pool. Unfortunately the pool bit the dust already, thanks to the puppy. There is no where to put a pool and keep it safe from the animals!! UGH! Jonah hates baths so I figured he would freak out if we even put his toes in the COLD water. I was totally shocked that he LOVED it! As you can see here :-)

Saoirse and her fancy cake made by Isabella. Poor Isabella was disappointed in the outcome of the cake. It did look a wee bit floppy, but it tasted fabulous!

This was way too cute! Jonah with some hearing protection (which is for some shooting practice, for Daddy and the girls...not Jonah).

We found a site that showed how to get some wonderful curls by using cut off panty hose. The girls were so excited to have curly hair for a couple of days. Here is Moira's locks.

A side view of Moira's curls.

Flannery's curls. She didn't leave hers in for very long. She was a bit too active to keep her hair tied up! But it still came out curly.

Flannery's side view.

This was taken a while ago at the soccer field after one of Jeremiah's games. I am NOT a good wife.....I stay home during his games. I met someone else's wife there that told me she went to every game.....but she only had a dog, and no kids. I keep telling myself that I have a good reason to stay home :-)

This was Flannery trying to get cool. This was the only shade near the soccer field. It was really hot out. We all got a bit pink from just being there about 30 minutes.

Saoirse going after the ball. See Saoirse. See Saoirse run. Run, Saoirse, run. My girls have seen the Dick and Jane books and they think they are absurd! Ha! They always ask me, "Mom, why do they keep repeating themselves?"

Jonah and I hanging out. This is how I normally carry Jonah at an outing or during grocery shopping.

Um, Jed, the rule is NO hands! Put the ball down....slowly, and back away.... :-) He's still learning the ropes.

Even though the color in his cheeks is from overheated, I have to say I love seeing him with some color! Someday, someday he may not be white as a ghost on a normal basis.

Jedidiah did kick the ball some. However his sisters kept getting the ball and kicking it far, far away. I am amazed at how far he'll run. Here I think he was tired of chasing the ball, and took matters into his own hands (literally).
Moira hanging out at the field.

Friday, May 15, 2009

trying to catch up

Goodness, every time I try to get on here to post I get consumed by something else, or I am on the back computer (in which case I don't have access to pictures to post). This time around I said....I'm doin' it, I'm writing a post, come what may. So here it is. I'm sure it will be piece-meal. And it will be pictureless because I am on the back computer. Oh well. And who knows if I will actually be able to write everything that I wanted due to a teething/sick/something baby. He's not been sleeping well and has been waking up at all sorts of odd hours. Pour little guy.

OK...on to the post, of which I am hoping I can even remember what I wanted to write about. I will start with Mother's Day. We had to stay home from church since Jonah was sick. His cough sounded horrible and he had a fever. Isabella had been feverish the night before. This illness has hit all the kiddos. Jedidiah had a rough time with it. We were able to get by without caving into antibiotics. I am glad we were able to do that because antibiotics just throws another wrench into an already chaotic picture. I was able to talk with Jed's homeopathic doctor during Jed's illness and give him the appropriate remedies. Back to Mother's Day, the girls all made me lovely drawings and a couple of picture frames. I was in the mood for some cinnamon rolls that morning. No one was awake yet, so I set to making them myself. When the older girls woke up they had planned on making me breakfast. Hey, I wasn't going to stop them :-) So they set to making some eggs and toast. We listened in to the sermon from the computer. The day was pretty quiet. Jeremiah made us all dinner that night. So I got the night off from kitchen duty :-) And to top it all off Jedidiah actually said "mom" for the first time! It sounded more like, "mmmmmmmummmmmmmm". Look closely and you will see a "u" in there. He had two long "m" sounds that were on either side of a short, but oh so sweet, "uh" sound. He has taken to calling me "mom" half the time and "bah" for the other half. "Bah" is what he normally calls me.

My computer time has been limited to mostly researching homeschooling things. The girls will be taking their year end test in a couple of weeks. Normally that is the end of our school year and we take a break for summer. This year will be different since we had taken more time off after Jonah was born. To make up for that we will take a short break, one week or so, and dive into the beginning of the next school year. I think it may actually work out better this way over all. I plan on giving them a couple of weeks off come Sept. when it gets cooler out. Right now since it is so hot during the middle of the day they have been playing outside in the morning and evenings, and doing school during the mid day. Then come next spring we'll take another long break. So I've been printing off attendance sheets, and other printables. I am trying to make up a reading list for this coming year. I am gathering a few different lists and then will pick and choose the ones we will do. I was given the link to a neat Charlotte Mason site a while back. I looked at it and thought it looked like it could be helpful. I must not have spent much time on it...because I looked it over yesterday and was amazed by what they had on it :-) Ha! Plus we came across this (or these) really neat site(s) for free printables for some really neat lapbooks. I want to do a few of those this summer, to keep things more light hearted. I think it is more for my sake than the girls. It is hard to break from the thought of summer=no school. My girls of course don't care one way or the other. I will share our book list and curriculum once I have it all figured out.

I was able to talk with someone today who does holistic care. I got her number from a friend. I am really excited to meet with her in person. She said from the info I gave her that Jedidiah has a central nervous system problem. This is what his homeopathic doctor has been saying recently as well. I would like to get her to look at him just to see what she can "see". I want to first say that I am VERY happy with the progress we have made with the homeopathy. And I will continue to recommend it to others, and I plan to continue to learn more about it for the rest of our family's sake. But later next month Jed has a well child visit. Not a problem, except that the nurse called to ask if we would be OK seeing the new PA in the office. I guess his doctor and the PA have been discussing Jed's case and his doctor is "frustrated at his lack of weight gain". Hmmmmm, that might not be good. His doctor has been fabulous through all of this. But I have the feeling we may be heading for a bit of a confrontation this time around. If his doctor wants more testing done, due to the lack of progress in his weight it is going to be hard to explain that we need more time. And by no means is his doctor pushy or anything like that, but it does get hard to stand your ground when it looks like I don't have anything to stand on!!! So my hope in going to this holistic care person is to see what she believes is going on with Jed. That way I will be armed with two other alternative med. peoples' opinions. And, who knows, she may be able to help us get Jedidiah better faster. I'll fill you in after his appointment (June 3rd).

Well off to bed I go. We have a parenting seminar we are going to tomorrow. That will last till early evening, then off to a graduation party. And let me tell you that makes me feel old!!! The girl who is graduating was 4 years old when we first me her!!!! Now she's graduating high school. Yikes!!!

I will leave you with a couple of links to the places I have been hanging out at lately.

Donna Young's printables

Simply Charlotte Mason

Lapbooks---this one doesn't look like much at first. You will have to sign up in order to get the password to the lapbooks, it's free. And most of the stuff is on the bottom of the page after all the google adds. But don't let all that stop you, it really is a neat site!

Homeschool freebie of the day

That's all for now. I'll be back at some point with pictures.

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