TUMBLING

We learned some very important lessons around here today. This morning I had to give a presentation at Iowa Wesleyan, and although I had prepared everything back in November, I hadn't really gone over it again until this morning. I didn't know I'd be giving it today until last Friday and I just never found the time to prepare over the last few days. I brought Liam upstairs with me so I could look over everything for a bit before I went in, and I let him crawl all around upstairs like I always do...BUT this time he knocked over the stair gate some how and tumbled all the way to the bottom. I could see him and the top of the stairs from my computer, but apparently not watching him as intently as I thought I was. I heard a crack and watched him start tumbling down the stairs, but the thump I heard after hitting each stair was the worst part. I have never been so glad to hear him screaming! I checked him over for bumps and bruises, and thankfully nothing happened, but it scared the heck out of me. I decided I'd just wing the presentation and didn't look over it at all after that. I stuttered, mumbled, and forgot what I was going to talk about but considering what could have happened, I don't even care that I embarrassed myself in front of the group.

The take-away...Don't buy the cheapest stair gate, Don't assume having safety precautions in place make it ok to look away even for a second, and stop procrastinating! If I would have worked on this yesterday, I wouldn't have taken him upstairs and let this happen!

I will be spending the rest of the day researching better baby gates and doing all the baby proofing projects that magazines say you should do!

Neurology and EEG

So far we still haven't heard back about his EEG, but did get some info/tips from the neurologist. From comparing his MRI from December to the one in May, his white matter has continued to develop. It is still delayed, but at least we are making progress. The delayed area in his frontal lobe hasn't really changed too much and is still more delayed than the rest of his brain. Right now it is still unclear what exactly that means. I actually got a chance to see the images of his brain for the first time yesterday, so that was kind of cool. It sucks that he has to have images of his brain taken in the first place, but still kind of cool to see.

They are likely going to test him for something called cornelia de Lange syndrome in the near future. He has a lot of the clinical features, especially excessive body hair, a unibrow, really long eye lashes, and fast hair growth. There seems to be about 50 different symptoms, most of which he has. Google has a lot of info if you are really interested :). Because so many syndromes have so many overlapping signs/symptoms it's hard to say what will happen. It's also not that easy to test for. There are several different genes that can cause it, so it seems like you just have to start with one and keep trying until you find it or run out of options. I'm sure insurance will love that! Since his unibrow isn't that bushy and his facial abnormalities are somewhat subtle, I think it would be a milder case. I had done my own research when he was younger and had wondered about this syndrome, so it's interesting to know it might be a possibility.

There is another syndrome they might be testing him for, too. I forget what it's actually called, but it's PMD. The neurologist doesn't seem to think he even has it at all, his development is too "good" and the delayed myelination isn't in the right areas of the brain. I think they are just going to test him because they are running out of things to test for! It's another genetic test so if insurance won't cover it, they won't even bother with pushing for it.

He also suggested we try a communication device (usually people use IPADS) so that he can let us know easier what he wants instead of crying and hoping we figure it out! I think the rest of us will appreciate it as much as he does! I've got all my teacher friends and relatives doing my research for me to find the most toddler proof one. After digging glass out of his mouth from biting my cell phone, I'm not sure what damage he could do to a (VERY EXPENSIVE) tablet! Whenever his gait trainer comes in, I can order an attachment to fit an IPAD/Ipad like device. Since my sign language lessons didn't go over real well, I am hoping someone will be able to teach me how to teach him to use it!

He is having us wait to do all the tests he wants to run until he knows if insurance will cover the PMD test. This way he won't have to get poked as much. I have no idea how long that will take, but will be sure to keep posting as I find out more!

Random February Info.

It seems like I am always taking him to one place or another, but before yesterday's neurology appointment and EEG I can't really think of too much new going on! Lately he has been having weird episodes where he shakes, almost like he is cold, and it usually lasts about ten minutes or so. He is still completely aware of whats going on around him, but so far he has only done it in his high chair so it could also be a behavioral thing. The neurology department in st. louis now has a website patients can send videos to, so I guess I'm just going to see if I can get it on camera sometime. In the past 3 months it's maybe happened 6-8 times, so at first I didn't think much of it. We'll see I guess.

Last week I had mixed up the time we were supposed to go to see endocrinology and had a bit of a temporary meltdown afterwards :) For some reason I am suddenly struggling extra hard to remember appointments or double scheduling, and I NEVER get out the door on time anymore, so I ran to target today to buy a bunch of planner stuff. I ended up getting $68 worth of "organize my life" stuff, so I really hope it helps!

I've also been running all over SE Iowa the past few days trying to get a copy of Liam's medical records from every doctor. It's been such a hassle, nobody wants to give them to you! A lot of places tried telling me they'd just send them wherever I wanted them to go, but with all our specialists it's impossible to make sure every doctor gets every other doctors records. I just want a personal copy to keep with me so if someone didn't get records, mine can be copied. I did get his records from Burlington Pediatrics without a problem, which is really probably the most important one *besides neurology* but am really frustrated with everyone else!! Oh well, a tank and a half of gas later I have finally gotten most of them!

I think I have decided to send him to the developmental preschool next year. It's 5 days a week, all half days. I think if I sent him to "regular" preschool I'd be so uptight about making sure the teacher knew everything she needs to for him, I'd drive everyone nuts. I can't believe he will be in preschool in about 6 months!!!

I don't think Liam will mind too much if he has to share his website with another family member who has recently needed medical attention. Angus, our poor puggle, had his eyeball fall out a week or so ago. I am pleased to announce his eyeball removal surgery has been post-poned/cancelled because it seems to be doing much better. It's really cloudly and I don't think he can even see out of it, though! He keeps walking right past his treats if they are on the "bad" side. I'm just glad it's healed enough I don't gag every time I put his eye drops in!

What NOT to say to a parent of a child with special needs

I generally try to stay clear of websites like parents.com or similar websites that talk about kid’s growth and development. It used to feel like a slap in the face every time I got on there when it was obvious that Liam would never fit into most of these articles. I've pretty much gotten over that, so I do get on there every once in a while. The other day there was an article about things not to say to an expectant mother and I clicked it. On that page there were links to other websites with articles like “what to say when a friend is sick” or “What not to say in awkward situations.” I was curious so I googled “what not to say to a parent of a child with special needs” just to see what would come up. There wasn't really anything at all, so I thought I’d give my opinion on what an article like that should say. If you are offended by anything written, assume I meant it with a smile :). 

1.      “I’m sorry”

Usually this just leaves me reassuring you. “Oh, it’s okay.”

2.      “It could always be worse”

           

Thank you, Dr. Phil. You are right, it could be a lot worse but on days I’m completely stressed out, this doesn’t make me any less frazzled. Plus, while I’m usually a very optimistic and cheerful person, if I want to spend a few hours feeling sorry once in a while, I’d like to do it without feeling guilty.

3.      “I know just how you feel”

Usually this is followed by a story about how “Little Joey” had a cough that took an entire 2 weeks and 4 doctor visits until it went away. Really?

4.      “I saw on TV…” OR “My friend’s brother’s wife’s uncle’s mom said”

 I feel (a little) guilty admitting I hate this one. I SHOULD be grateful. The intentions are good, but........Usually this involves someone who knew someone who went to a doctor I should check out, or a 5 minute segment on a condition that has a few symptoms in common with Liam.

The exceptions?

ü  I ask.

ü  You have medical experience. (An introductory A&P class does not count, sorry.)

ü  You are willing to bet your right arm that whatever you saw is the answer.

 The problems with these statements are that there are thousands of conditions that share many of Liam’s symptoms, and literally everyone knows someone who went to a doctor they really liked. Aside from our regular pediatrician, we have NINE specialists we see on a fairly regular basis. I like all of them so much that I travel 4-5 hours to see many of them. Considering the gas mileage my jeep gets,     this is a big deal! I spent hours researching many of them, and then I even spent time researching the school they went to. Yes, I am anal. Yes, it’s probably creepy that I spent so much time looking them up, so please don’t tell them I’ve done that. I’ve “fired” many doctors before; 6 I can think of off the top of my head. I’m sure your doctor is great, but I am sticking with mine. The last thing Liam needs is one   more doctor, but I am sure that he also appreciates the sentiment behind your advice.

 Also, because I’ve already admitted how anal I am, I can assure you that whatever article or tv show you saw, I saw as well. Then I probably used my school account to find the actual medical journal article that prompted the media to talk about it. I’ve paid $40.00 to read the really interesting ones that I couldn’t get for free. It’s not that I don’t think you know what you’re talking about or that you don’t have valuable information to offer, but…

5.      “Everything happens for a reason.” “God doesn’t give us more than we can handle.”

I don’t know why, it’s just annoying. It just seems like something to say when you can’t think of anything else to say.

6.      “What did the Dr. say this time” followed by “what does that mean?”

   This one by itself isn’t really all that irritating, but usually this question is asked by 45 different people. I then tell the same story 45 different times, then have to explain it a million different times. This alone is the entire reason I started this blog. I have spoken to others in similar situations about this, and it’s unanimous. We appreciate it, but it’s exhausting.

7.      “He’ll be okay, just give him time”

Another one that I’m not sure WHY it’ so annoying, but it just is.

8.      “What can I do to help?”

Most people would completely disagree with me, but then I’d just have to spend even more time coming up with a list of things I can let you do. I already said I’m anal. I’d much rather everything is in a messy pile on the floor than put away wrong. I won’t lose sleep over a few dishes needing to be put away, but for some reason I WILL lose sleep if I am worried that the mixing bowl is on the second shelf instead of the third. I acknowledge this is my problem, but I’m probably not going to change anytime soon. Wash my jeans in the same load as a towel? Eww. Wash a load of my clothes and then put them all into the dryer without separating my tank tops to air dry? Weird, I know…but I will be “forced” to redo it. I fold my tank tops one way, my tee-shirts another…if it is not done this way, it is wrong.

I am going to assume that you asked me what you can do because we like each other. I want you to keep liking me, so I will insist that you do nothing.

Random thoughts

Liam is at daycare today and I'm running out of excuses to avoid washing the dishes and laundry so I thought I'd write another post to buy myself an extra ten minutes. I let him have baked beans last night, so I should probably apologize to the sitter!! The gait trainer is still going well, but he really only has two rooms he can use it in, the dining room and entry way, because the rest is carpeted. Since it is warm I am hoping to take him out to the shop where he will have plenty of room to roam. I hope our smaller one comes quickly because I can't fit the current one into my jeep.

When we were at the ear doctor the other day, some middle aged guy was playing games with Liam in the elevator and asked me "what is he, a little over a year? I didn't know what to say so I told him yes, but it made me wonder if it's just his height that makes him look younger or if there's something else. This isn't the first time someone's been way off on his age, so I pulled out his baby book and realized he has only grown 1.5 inches since his first birthday. I'm not sure what to make of it, but we have another appointment with endocrinology at the end of February, so maybe they will find a growth hormone problem or something this time? He is up to 26 pounds, so I know it's not an eating problem anymore. I am still so glad I stuck my ground and refused to let them put a feeding tube in! If I had everyone would think it was because of the tube that he had gained the weight.

Now that I am out of school and currently unemployed, I have been spending a lot of time at home with Liam. I'm running out of things to do with him, but there's really not much to do in Southeast Iowa that doesn't involve driving 45 minutes. If anyone has any ideas on getting out of the house, I'd be glad to hear them!