Liam's adventures

TUMBLING

2012-03-20T12:28:00.000-05:00

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

2012-02-29T16:32:00.002-06:00

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.

2012-02-29T16:19:00.003-06:00

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

2012-02-02T11:12:00.003-06:00

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

2012-02-01T13:10:00.000-06:00

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!

Walking with a gait trainer

2012-01-31T14:36:00.000-06:00

Last week, physical therapy brought us a gait trainer for Liam to use, but he was about an inch too short to be able to actually use it. We got a new one this week, but again he is slightly too small. We made it work by using some of the prompts upside down, but we will only be using it until we get a new one ordered in. Luckily the AEA is letting us until ours is ordered. We have to have a doctors prescription for it, but we were told that they come in pretty quickly. He will only need a chest prompt and a pelvic support, but it still costs $1400. Insurance will most likely cover it, I just can't imagine how much it cost for the kids who need all the supports!!

The physical therapist said she was surprised at how well he did with it on his first time, she expected that he would only go backwards, but he was going all around the room and I was surprised at how fast he went! She was talking about other brands of gait trainers (we are getting a rifton) but said that she usually puts kids in the other brand if she doesn't think they will ever walk on their own. She seems pretty positive that Liam is going to be walking on his own eventually. I always figured he would walk on his own, but hearing it from someone who knows what they are talking about is always nice!

He walked around for about twenty minutes, and probably would have longer but it was time for a nap. It must have worn him out because he was asleep before I even left his bedroom. It's kind of bittersweet, though. Every parent looks forward to watching their baby take their first steps, but no one imagines watching those steps with a metal device strapped to them. But he looked so proud of himself (well, before the nap time melt down) strolling across the room though, that I barely noticed it.

Insurance is confusing

2012-01-20T12:40:00.005-06:00

We got a letter from insurance saying Speech/Physical therapy etc. was denied because he wasn't making enough progress, but then the next day we got a letter saying he was approved for all of 2012. Of course calling and asking which letter to trust was useless, so now I am not sure if he is approved or not. I would think that not making enough progress would make it even more important to go, but who knows.

On the other hand, our physical therapist from the AEA will be bringing Liam a walker to get around in. We tried before but he wasn't quite big enough for it yet. This one will have bars and other prompts on it that will assist him but can be taken off when he doesn't need them. I hope he doesn't need the walker for a long time, but if it gets him walking I guess I'll take anything. Kids can be mean and so can adults,I just hope people don't make comments or stare when he is older if he is still using a walker.

U of I Children's Hospital

2012-01-11T11:05:00.002-06:00

I've been pretty bad about keeping this updated, but I've been told that a lot of people are asking about how he's been doing. A week before Christmas, he had a series of seizures that were pretty unusual for him. Instead of his typical complex partials, (stare off into space for 10-30 seconds then snaps right out of it like it never happened) he convulsed. The first one lasted several minutes and 911 was called, he was given oxygen, then transported to the U. They did some routine blood work and sent us home. He had 2 more convulsive seizures so I took him back up the next day. While back in the ER, he had another seizure in front of the doctor and they had to give him 3 doses of rescue meds to stop it. After we noticed he wasn't following anything with his eyes or using the right side of his body, which is apparently called Todd's paralysis in epilepsy...but it reminded me a lot of left side neglect that stroke patients can get. Liam's paralysis only lasted a few hours but it can last up to 36. Not even his eyes would move past mid-line, it was as if he just completely forgot that the right side of his body was there, nor did he cry when IVs were put in on the right side.

Next, he had a CT scan and they thought that he may have a lesion in his left parietal lobe. He was still pretty out of it from the seizures, which is not normal from him, which worked to our benefit because he didn't even try to wiggle out from the scanner and it only took about 30 seconds. Once we were admitted to the hospital, they put us into isolation as a precaution, so staff had to put on masks, gloves, and gowns anytime they came into the room. I had to do the same whenever I left the room. The child life specialists were great at bringing in toys, movies, and even snacks since he couldn't leave the room. After a spinal tap, more blood work, respiratory tests, observation, and 2 MRIs, we were able to eliminate a lot of things but weren't able to figure anything out. They determined from the MRIs that the images from the CT scan were put together in a way that only made it appear there was a lesion and there was no brain abnormalities aside from the delayed myelination in the frontal lobe that we were already aware of.

I am having the new MRIs sent to St. Louis for Dr. McGill to compare to the MRIs from June, but other than that we haven't figured much out. We now have a rescue med on hand that we have to give him if he has a seizure that lasts more than 5 minutes or if he has more than one in an hour. We are going to do a new EEG in February in St. Louis as well. I hope for his sake they get all the glue out of his hair this time! We have upped his trileptal and he hasn't had any seizures yet, but this EEG MAY tell us if we need to change or add to his meds. Apparently epilepsy drugs have a high abuse rate and can be hard to get so I hope not. We are only allowed to have one dose of the rescue drugs at time due to federal regulations, which worries me since he had 2-3 doses in the ER.

So, we haven't learned much but he is doing well and has even started pulling himself up to stand and cruising along furniture. I'll just continue "going with it" for now until I learn I there's something I can actually do.

Trouble Maker

2011-11-14T16:34:00.001-06:00

I'm so proud of my little booger for finally starting to get around by crawling...but I'm not so proud of his new favorite activity! He loves to go into the kitchen, knock over the trash can and CRAWL IN IT! I thought the first time was a fluke, but the boy loves trash I guess. It's still pretty cute to see him finally learning how to get himself into trouble. We've got a few months before we have another appointment, so I won't have any updates for awhile, but he is growing like crazy. I am so glad I kept refusing the G-tube this summer, otherwise we'd all assume the growth spurt was a result of it.

I am so glad school is almost over, I've had a really hard time keeping up with everything this semester. My GPA is shot for sure, but I guess no one really cares about your GPA once you're done with school anyways. I'll be done in December and hopefully will get some free time again. No plans for after graduation, so for awhile I'll probably just hang out with Liam. It will be nice to get to take him out more instead of staying home so I can do homework.

we have a crawler!

2011-10-25T14:50:00.003-05:00

Liam has been crawling a few feet here and there for the past several weeks, but has started really taking off to get to the things he wants this week! Across the room, into other rooms, wherever he decides he wants to go! His biggest motivator? Leaving my laptop open on the floor...the second he see's that he's flying across the room in order to hit (and pull off) the keys. I've definitely been looking forward to this, but wasn't prepared for everything I'd have to Liam-proof! I took some videos of him crawling, but the lighting is terrible and it's hard to make out.

Insurance is letting us have 6 more physical therapy appointments and we started that again yesterday. Hopefully they will approve more visits when this 6 is up! He has also been gaining weight like a pro and in the matter of weeks outgrew all of his clothes! I am hoping to find time to go shopping this weekend for him so he doesn't have to keep wearing the same 3 pants. He's still now at the 5th percentile for weight, but I'm not sure about length. He won't hold still long enough to let me measure him!

We will be sending off his final paperwork for the clinical trial in Washington DC, then they will contact us for an appointment to come see their doctor. It will be like a regular neurology visit like in St. Louis, but will probably be a bit more in depth and I'll probably answer a lot more questions...but most importantly I will be able to ask a lot of questions!

We finally got "moved in" to our new house, but the garage is still full of boxes. Matt hasn't really been home for the last 2 months or so, and I'm about to lose my mind trying to unpack, work at my internship, do homework, and take care of a now mobile 2 year old (Although I wouldn't trade that last one for anything!!) I think Liam will be better adjusted to the move once we have all our stuff unpacked and his dad is home at a time he is used to.

Clinical trial oppertunity!!!

2011-08-31T13:15:00.000-05:00

There really hasn't been too much new "info" since I last posted. We never heard back about Liam celiac test which generally means he doesn't have it so they didn't feel getting back to me was urgent or he hasn't gotten the results back himself.

We had another neurology appointment in St. Louis last Tuesday and we didn't learn anything new. He had some blood drawn a few weeks ago for some testing for some conditions they didn't think he had enough clinical symptoms for anyways, and of course they came back normal. I have suspected for awhile that he has a decreased sensitivity to pain because he doesn't really cry when he gets shots and didn't seem to be bothered by bonking his head as much as a lot of other kids do. I had told them this before and was told that kids have different tolerances for pain and they kind of brushed it away. In their defense, I didn't have much evidence on why I thought this other than a hunch. This time though, they pinched his toes really hard and said that most kids would either be crying or pulling their feet away and he acted as though he thought it was funny. They said now they agree with me. They also added that it wasn't that they didn't believe me before, but who knows!

Anyways, the point of this post is about a clinical trial in Washington D.C. I am desperate to get into. Some trials you can sign up for yourself, but this one requires a physician to refer patients. There are a lot of symptoms a patient must have but they can be excluded if certain other conditions are there, so I am guessing that only the Dr. can do it so they don't receive a bunch of applicants that they don't want. As soon as I am finished with this post, I am going to start filling out our portion of the paperwork and send it off.

A simplified explanation:
The purpose of the trial is not to find a treatment or cure, but to see if kids with similar symptoms have a similar MRI, genetic error, or something else similar that can kind of group them together so give a name to a condition. Basically, we will have free MRI's and blood work. We may also get genetic testing done that isn't available at an actual dr's office yet. (genetic tests aren't simple, they have to look at each chromosome and each gene -which there are probably billions of different combo's of- and they have not yet found a way to do this simply. A lot of genetic tests can only be done through clinical trials, who knew). It doesn't specifically say when we'd have to go, how long, how many times, etc but in most clinical trials all you have to do is pay for your way there and a place to stay. This is MUCH cheaper than MRI's and bloodwork, plus then I can tell Liam when he is older that I took him on "vacation" to washington DC, haha.

Even though this trial isn't intended for treatment, if they do identify something this will give them a foundation for more research that can include treatment options. This specific study is looking at kids who have a delay in myelination and a few other things I can't remember right now and I don't remember what it excludes but I'm not sure I care as long as he qualifies!

Everyone pray he gets in...if you aren't a prayer- cross your fingers, rub your rabbits foot, or whatever it is that you do because we really want this!

Gastroenterology

2011-08-03T17:32:00.000-05:00

Liam went to visit with the gastroenterologist yesterday...He told me the neurologist was hoping to persuade us to do the g-tube but he said after seeing him himself, he doesn't think he needs one. We did a blood draw to check all of his nutrient levels and to make sure he has no deficiencies but the gastro. says he thinks he may just be small without any medical cause. They did one for CF as well, but he said they do that for all kids on their first visit along with the nutritional labs. They also did a test for celiac disease, not sure when any of those results will come back. Luckily for us, he had a big weight gain in the past few weeks (he is up to almost 24 pounds now) otherwise I think he may have been more concerned.

"mama"

2011-07-25T22:58:00.000-05:00

Since getting his tubes, Liam has said "mama" and "no no" for the first time, and he is attempting to repeat other noises we make at him. Pretty excited!
We go get his glasses tomorrow, I can't wait to put them on him and see how cute they are!

All of his endocrine results came back normal, but the dr. said if he hasn't grown in 6 months we could look into retesting him and/or starting medications. I'm not sure which medications, though...if they are hormone based or something else. I know you can use growth hormones even if there is no deficiency, but whether that is what he is thinking or not I'm not sure.

Braces and Glasses

2011-07-20T09:20:00.000-05:00

Liam's ankle braces came in last Friday, and he tolerates them much better than I thought he would. The shoes that came with were embarrassingly ugly, so we went and got him some new shoes a few sizes too big so they'd fit the braces. One of the braces only goes up to his ankle so it's hidden in shoes, but his right brace goes up to his shin. I was really hoping they'd both be small so random strangers wouldn't stop me to ask about them (yes, people really do this!!!)

I AM SO EXCITED that Liam is getting glasses, I am so glad we changed eye doctors! I'm not sure when they will be finished, but it shouldn't be more than a week. We went with the google type, and picked bright red because they had that one in already so we wouldn't have to wait even longer. I love babies in glasses:). I hope this makes a huge difference in his attention! He was "diagnosed" with somewhere between 20/30 and 20/40 but said he could get it more accurate next time after he's been wearing his glasses for 3 months.

No word yet on his hormone test results...

Tubes are in!

2011-07-10T19:30:00.000-05:00

Liam got his tubes in and everything went just fine...checked in at 6, went into surgery by 7:10, and was out of recovery and back into his room by 8. They found that part of his nose was blocked 60% but that it can be normal for kids his age and can be grown out of (the dr. said this to matt who didn't listen much, so I am guessing that this is what he meant) so no other surgery needed. His tonsils and adenoids were fine.
He slept a lot on Friday and Saturday and has been a little crabby and not sure if it's related to the tubes or not!
We go into endocrine tomorrow, so hopefully that goes well! I hate going to the U, we always have to sit in the waiting room for an hour and he is screaming because he is bored...crossing my fingers!

Time for Tubes

2011-06-30T18:57:00.000-05:00

I was surprised to learn today that Liam needs tubes in his ears, he is only hearing at 40 Decibels and should be hearing at 10. But, they said it's all fluid and theres not any sign of nerve damage or anything so hopefully once he starts hearing better then he will seem to pay more attention instead of seeming like he just doesn't want to listen (which is what I thought he was doing...Whoops!)

So we will be going to the hospital next Friday (July 8th) to get them put in, then they will put a camera down his nose (or mouth?) and check his throat to see why he seems to have problems breathing out his nose. If his adenoids/tonsils are looking ugly, we'll schedule another appointment to have them removed. Otherwise, it's just weak muscles and he has to strengthen them on his own. I think they think they will probably have to be removed because they said they were really asymmetrical but who knows!

2011-06-28T22:53:00.000-05:00

Lowering the seizure meds has seemed to be pretty helpful, he isn't as lethargic as often and when he is I think it is because he has learned that "spacing out" gets him out of stuff....The other day we thought maybe he was having some seizures at therapy, but then we realized he didn't do any spacing when he was having fun or if he had to work to keep his balance...so the little guy has learned a new way to trick us! He hasn't had any reflux with the new dose either, so hopefully that stays that way.

He hasn't been weighed lately, but he has been eating like a pig so I'm betting he has gained...He ate dinner for a solid 45 minutes tonight, along with quite a few cheese-balls courtesy of Uncle Tyler and Aunt Erin!

I switched his eye doctors today, getting tired of hearing "He'll need glasses, but let's give it another 6 months" every time. We go in a few weeks, so hopefully they will take care of at least his strabismus (one eye is slightly slower than the other focusing on something) and astigmatisms rather than telling us to wait. Since it's only really noticeable to me in pictures, I hope I remember to take some with us!

We go on Thursday to have a camera put down my poor baby's nose to see if there's anything that would tell us why he doesn't seem to be able to breath out his nose. Sounds like it's going to be awful... They are also doing a test to test how his ear drum vibrates, at an office visit it didn't seem to very well, but less than a week later he had an ear infection which pretty much explains that away and I'm not too worried about it at all.

Liam turned two!

2011-06-16T10:18:00.000-05:00

Liam has been two for two days and I think he enjoys it! He was sick on his birthday and slept most of the day but he did get to have marshmallows and pizza rolls for breakfast. I took off from my internship to spend the day with him, but mostly I just watched him sleep.
Yesterday he was still not feeling well, but he got to go to physical therapy in the pool and he giggled the entire thirty minutes there, but was pretty crabby the rest of the day.
When we got home he got to open one present from mom and dad, and he loved it for a few minutes but he started feeling sick again and just wanted to cuddle. He hasn't been eating well all week, but his appetite seems to be making a comeback. I think today he is finally feeling much better. He is hoping to make a full recovery by his birthday party on Sunday!

Chromosome, EEG, and MRI results

2011-06-16T10:12:00.001-05:00

Finally stopped playing phone tag with the neurologist! We got our results for the EEG, the MRI, and the Chromosomal analysis. Lots of big words, so I'll try to explain everything as simple as I can. I may have a few things mixed up here and there, but it's at least the overall picture.

His chromosomal testing came back normal, but that does not mean that when technology improves that will still be the case. The doctor believes that there is something there in that area, but in the mean time the only way to find out for sure is to try to find a clinical trial or research being done by someone interested in DNA sequencing on kids with similar symptoms. He is going to take Liam's info to a conference and get the opinions of others. He is also going to talk to colleagues from St. Louis and other places to see about any clinical trials. (*I think he said other places as well, anyways). I'm not sure if it will be this week or not, but he asked my permission to do so and I obviously said yes.

With the chromosomal testing they did, called a microarray, where they basically just check to make sure that the right number of chromosomes are there and that it was "put together" correctly. I am not sure if they did FISH testing or not, but I would imagine so. We'd all have slight "abnormalities" in our results if we had the test done, so they only report on changes that are known to cause a condition.

Here are two sites I thought might help if you want to know more about it. They might not be the best, but they were the best I could find on google. If you want to check into it yourself, be sure not to get into a site trying to sell at home genetic tests and that it is not intended for miscarriages.
about chromosomes and genes: go to www.kidshealth.com and in the search bar type all about genetics

a site about different testing: http://www.subtelomeres.com/ClinicalDiagnosis_6.html (not sure if you can click on it or not, but copy and paste should work if not.) Definitely read the standard chromosomal testing page, and the FISH page (second link on left side).

The purpose of a clinical trial for Liam is because with the testing that was already done, they simply can not look at every single gene in the entire body. The technology for full DNA sequencing as a procedure is still at least 5 years away from being available from a doctor. But, doctors can do this in research. The trick is finding a trial/clinical research that is looking for a specific thing. I've searched around very briefly and found 1-2 he might qualify for, but I didn't completely read them yet to see if he does.

EEG-
Found no indication of seizure activity or abnormal spikes that were not seizures. This could be because he is on medication for seizures and he had none, but it's also not uncommon for an EEG to not pick up on a seizure. I think we got a bit too high with his seizure medicine, he seemed a bit different when we upped his dose the last time, so we are going back down a little bit. The doctor is going to call me next Wednesday to see how he reacted to lowering the dose. If I think he had a seizure we may add a new medicine to his current medicine, or just start a different medication. One in particular is known to cause weight gain, so I'm looking into that one.

What I love about this doctor is that he just told me to check out some different medications on my own and that he would call next week to see what I thought of the ones I found. He is going to "think on it" this week as to what medication he thinks would be best. I'm sure he is just trying to make me feel like "parents know best", but it's working. We may also do a Video-EEG sometime, where he just spends a day or more (usually at least 24 hours) in the hospital hooked up to the electrodes and he is on video. Whenever I see a "seizure" I can push a button and they will see what happens during that time.

MRI-
Still shows delayed myelination (the white matter of the brain...it "gets whiter" up until young adulthood, but the amount of myelin should directly correlate to age - the brain myelinates due to experience...and myelinated neurons are way faster than non-myelinated "gray matter".) Seizures can cause delayed myelination, but I'm guessing even without his seizures it would be delayed. I also found a journal article where they found that kids with strabismus (how his eyes do not always work together, or one lags a bit behind when focusing on something) have significantly longer times reaching developmental milestones, and that these kids ALL showed marked improvement just days after having surgery to have it fixed. I don't think his is bad enough for surgery, but it makes me glad I am changing eye doctors since he has been diagnosed with strabismus.

The main purpose of this MRI was to make sure that his brain was continuing to develop, and it is so we basically got what we wanted. It was expected that there would be delayed myelination, because that is often the cause of developmental delays.

So, overall we didn't find out anything new with the tests, but it did rule out some things. And if we do not find a clinical trial right now, new ones start all the time. And if one never comes up, eventually it can be ordered by doctors.

2011-06-13T21:04:00.002-05:00

No updates...Liam was sick and we had to cancel all appointments, and so far our neurologist hasn't called back yet, although sometimes he does call after 9 or so...

Some updates on having no updates

2011-06-11T16:28:00.000-05:00

Well...we STILL haven't heard anything back yet, and I was starting to get a little anxious. However, I checked my phone today (Saturday) and a bunch of voice mails I had not gotten yet all popped up today and I have had 2 voice mails from the neurologist from over a week ago. (I have been having really bad luck with my phones lately and have been switching back and forth between some old ones until I got a replacement, but I finally ordered one today that should be in soon.). Too bad it is Saturday, now I have to wait 2 days to call him back to find out what the results are. I will update this on Monday I hope with all the information we get.
In the mean time, anyone who wants to come to Liam's birthday party, it will be Sunday the 19th at our house at 4 pm!
He's down to once a week at physical therapy and gets to do pool therapy on Wednesday, so we are pretty excited about that. We are also going to get some ankle braces for him. We have an appointment Monday, but I don't know if we will be getting them or just ordering them. We will have to find out if he keeps them on! I'm not too sure if he will keep them on, though. I doubt I will have them on him all the time, but who knows. They are because he has "out-toeing" and "over-pronation", each of which are fairly common, just not together. Basically, his feet point out pretty far and he only steps on the inside of his feet. I don't think it's anything related to his "condition", because a lot of people have some sort of stepping problems. (I have the exact opposite where I walk on the outside of my feet.) It just is harder for him because he has both, making it hard to grip the ground when he steps. He has been getting better without the braces, and I have access to medical journals at school which say that the braces don't usually really do too much anyways.

I'm really disappointed that I completely spaced off the Dream Night at the Zoo I wanted to take him too, I had it circled on the calendar and everything! I know he would have loved it, but I guess we will just have to go some other time that's not on a special day! Since this child has everything he could ever possibly need, for his birthday I think all he is getting is a Rody toy (a blow up rocking horse basically) and I got him a fall outfit! Worst mom ever! I was going to get him a pool pass until I realized he is under 2 so he gets into the pool for free. I think I am going to take him to St. Louis for a few days sometime to go do some cool stuff we don't usually have time to do and just hang out.

The only other medical stuff I can think of is that I totally missed his eye appointment, so I am going to try to get into St. Louis. Iowa City keeps saying he needs glasses but that due to his age they want to wait, and I don't want to wait any longer anyways. They also put my name in a no-show book which made me feel like I was 12 so I'm a little embarrassed to go back.

We also went to a cranio-facial specialist to have his nose/throat checked out because he doesn't seem to be able to get enough air into his nose if his mouth is closed and we are scheduled to have a camera put down his nose at the end of the month to make sure there are no abnormalities. We were sent here instead of to an ear, nose, throat doctor because our favorite pediatrician, Dr. Jackson, was worried that they'd just default to surgery, whereas this other guy wouldn't. The specialist said he has an asymmetric gag reflex and adenoids, but didn't seem to think that was too significant. They are also sending us over to have another hearing test because he couldn't see if his ear drums were vibrating in the office, but we have gone through the hearing test thing at the University awhile back and everything was fine then. In the office, Liam's ears were full of wax so I'm not too worried about his hearing at all, he always turns when a noise is made.

He gained his lost weight back and then some, and other than that there really isn't too much else to update on! He just spends his days walking around in his jeep, eating snacks, and playing with mama. (although I've been told by several that everyone can tell he's been spending more time with me now that schools out, I *think* he is a little spoiled!!!!!!!!!)

2011-05-05T10:53:00.000-05:00

Mostly just updating to say that there is not much for updates yet in case anyone's been wondering if I forgot! The only new update is I had to call the hospital's (St. Louis) procedure department to answer some questions about Liam's sleeping/medical conditions for his new MRI. Some things make certain anesthetics harder on some kids, I'm not sure if anything I said did, but I guess we will find out. Neurology should be calling me soon with a date to go get a new MRI. We are supposed to get a new EEG as well but I don't think their procedures department takes care of that so I don't know when that will be. I hope it's during a nice day this summer, St. Louis has a lot of fun outdoor things to do.
We had his AEA occupational therapist come watch him eat and she seems to agree that he doesn't need a g-tube...not sure how much of that is because she thought thats what I wanted to hear and how much she really thought it, but she said he did a good job of chewing, getting the food to his mouth etc. She hadn't watched him eat since last fall. She is going to try to get me the name of a feeding clinic that has an occupational therapist, gastro, and psych as well. None of the close ones seem to!

On a side note, we got a postcard in the mail to an event called Dreamnight at the zoo for kids who have gone to the U of I and have a "chronic" condition. Considering he hasn't been there in a long time and he doesn't have a diagnosis I'm not really sure what the criteria is, but it's invite only and we got one. It's at the Des Moines zoo, and I think we are going to go to it. It's not until June so I hope I don't forget by then!
Other than that, as of yesterday I am FREE from school...hopefully I will get my sanity back and I won't feel so bad that Liam has been spending so much time away from home so his grandmas can take him to physical therapy!

Trip to St. Louis!!

2011-04-23T12:07:00.007-05:00

Well, we finally got our chromosomal testing done...but it will probably take at LEAST a month to get anything back. So, we will either figure something out or not. The doctor told us since the beginning of 2010, theres been at least 150 new disorders detected just simply due to the increase in technology...so even if nothing is found this time, in even a few years the same test could find something....AND because of all the new technology, it wouldn't be unheard of for Liam to have the first ever chromosomal disorder ever detected.
Obviously I hope they find something, and I hope it is something that other people have so we could know what to expect, but if he happens to be the first person to have something he could probably do clinical trials, so that would be kind of good, too. (They didn't say they thought he would be the first, just that it's not unheard of!)

We didn't really find out new information this trip, but we did talk about a lot of things. I think all the learning will come after we get tests back, and we are putting a lot of hope into finding something with the testing. Even if they find some rare abnormality, I think I'd at least feel better that there WAS something and feel less like if I just would work with him better or more he'd be fine. I guess at least I wouldn't wonder if I was doing something wrong or if there was something I could do better.

They are still talking about using a feeding tube, and I'm still quite reluctant. Even though he isn't growing, I wonder how much of it could be due to his "unknown diagnosis", and invasive surgery just seems a little premature right now. Not to mention, I was pretty tiny as a kid myself. (matt, however was a monster!!!!) I kind of talked the doctor into going to a feeding clinic before considering the tube so he could be evaluated by a speech/language pathologist, an occupational therapist, and a psychologist to rule out any other thing that could be done before resorting to surgery. If it was anyone else's kid, I'd probably think the mother was nuts for not wanting to do whatever she could to get her child to gain weight, but I just really am not sure he needs it yet and want to rule out anything else. I will definitely NOT consider it until we at least get his growth hormone checked in July...because that could explain a lot and then he'd just need to be given growth hormones.
I'm not really sure how the feeding clinic works, if it is just a day or a few days...but the neuro is going to be calling to get us an appointment and will find out soon. If he does get a g tube though (I am more open minded to it after talking to him this time, but not sold on the idea) He'd be in the hospital at least a week!! That just seems mean to do to him...

We will also be going to see someone about his feet, as he has really severe out toeing and over pronation (he steps only with the inside of his foot) and it is affecting how he walks. He can't grip the ground with his feet, so he doesn't really get anywhere in his walker unless he uses both feet to push off at once, instead of the normal walking pattern. Both the out toeing and over-pronation are pretty common and is usually just left alone, but his is pretty significant. I've looked into some medical journals since I have access to them from school and it seems like braces and special shoes don't do much to help, and that surgery is often needed....I hope not though! It generally involves cutting whichever leg bone is twisted and putting it into it's right spot. However, that's just my own research, so who knows how accurate that is!!

The doctor is also scheduling a new MRI, mostly to compare it to the one we had a year ago. Before, he had delayed myelination (not to go into too much neurology, but basically it makes your brain work faster, and isn't fully developed until you are into your 20s, but there are expected stages for it to be at. Most kids with epilepsy do have delayed myelination, and although it's not preferred to have it, most kids with developmental delays and/or epilepsy do as well as autism, and pretty much anything else). We will also be doing a new EEG to compare again, and to see if maybe he is having any seizures we aren't noticing. Both of these tests are common to have repeated, so it doesn't really mean anything other than comparing where he was then to now.

We also upped his seizure medicine again since he has shown so much improvement since the last time we upped it. We aren't really sure if he is having undetected seizures or not, but the dr. said even one seizure is too many. He also said he thinks Liam has more potential than he is giving right now, so the upping the dose is mostly to eliminate any undetected seizures and see if he improves more. This new dose will put him at the top of his dosing chart, but if it seems to be too much we can back off of it. Theres really no danger to over-dosing on this med, so I don't mind.

We spent the day at the zoo before with his cousin Trevor, and although Liam was grumpy in the beginning, I think he really enjoyed being pushed around by Trevor in the stroller! His favorite part was definitely the train!! We didn't get to spend as much time there as I had hoped, due to my procrastination on homework, so hopefully next time we can really make it a whole day trip.

I can't think of anything else right now to update anyone on, but I am sure I will think of something later on. In about a month, be sure to check on here to see if we found anything out about the chromosomal testing results!

2011-04-19T11:03:00.000-05:00

So, last night I was working on some homework and Liam was laying down playing on the floor. He was in my line of view the whole time, but suddenly I looked over at him and he was SITTING. He must have done it really quickly, because I had no idea how he did it!

2011-04-10T23:33:00.000-05:00

Well, Liam lost all the weight he gained last time at this appointment. We aren't really too sure why, he's been a huge piglet lately, but he's also been moving around a lot more, too...so who knows! I've also laid off on adding extra butter and stuff to his food since he's been eating so much, but maybe we stopped that too soon.
He also has started making sounds that actually sound like real words! Mostly B's but I'm guessing the rest are soon to follow!