Wednesday, July 16, 2014

Long over-due update

Wow, I've been quite remiss in my blog. I wonder if I still have any followers ;)
So, since it's been so long, I think I'll just do a quick update for now.
Reese is doing pretty well. In certain areas anyway. He is healthy, growing like a weed, and active. I bet the poor kid wishes he was mobile. He likes to move and kick and toss and turn. He'd probably run a mile a minute if he could.
Our biggest hassle is his seizures. He has had daily seizures since about the end of June of 2012. That means the poor kid has gone for over two years now - having daily seizures. Sometimes a lot of times during the day, sometimes when we're lucky, just one.
We're on medication number 8, and so far no relief from seizures. We've tried a lot of different combinations, and some of them just seperately, but nothing seems to be helping much. We've found that he has paradoxical reactions to any benzodiazepine type medication. That's a fancy way of saying he reacts oppositely to the medication as how it is intended to affect a person. That is a problem because a big portion of anti-epileptic medications fall into the benzo family.
We're hoping very soon - within the next 6 weeks to be able to start him on a cannibis oil. The cannibis oil has shown incredible reduction of seizures in most who have tried it. But with it being considered an illegal drug and all .... well it took some time to get it pushed through state legislation so it would be legal for us to try. The down side of it is, it's quite expensive. But hopefully if it works we'll be able to find a way to keep him on it.
Reese got a g-tube (a tube that is surgically put right into the stomach from the abdomen) and it has been wonderful for him! He is able to eat pureed foods orally, but gets all of his liquids,including medications, through his tube. It has been a lifesaver. He was choking and aspirating anything below about a honey consistency. He's had it for a year and half now and it has truly been one of the best medical decisions we made for him.
He gets to start pre-school for two days a week in the fall. I am excited for him as I think he will really like the social interaction and being around other kids. I hope it works out well and he's able to maintain good health and minimal seizures so he can go.
Right now we're just plodding along in life (and I mean that in as a good thing). Sometimes I try to map out and plan a future that I'm unsure of, but I do it anyway. And other times I just take it one day at a time and don't even worry about what tomorrow will bring.
We'll see if I can keep up a little better on the blog front. TTFN y'all.

Here is a lovely picture of Reesie kissing his most favorite toy in all the world. And by kiss, I mean lick until it's dripping wet.

Thursday, February 21, 2013

You can do it too!! :)

I have to tell you, I feel a little awkward when people tell me in reference to dealing with Reese's condition : "You're so strong" "What you do everyday is amazing" "You're such a good mom!" Now I know these are compliments, and I thank you all dearly for praising my strengths :) BUT ....... I still feel awkward. I'm not sure what to say. What I'd like to say is "Thanks! But it still sucks hardcore to have to do it!" And believe me, I'm not as strong as you may think. A lot of "what I do" comes down to survival - not strength.
 Now for the soap box portion of this post. I do NOT like it when other people, especially other parents tell me: "I could never do what you do!" Really??!! I mean REALLY people? If your 8 month old was found to have this condition, or your 5 or 6 or 7 year old, or I don't even care about the age. If your child of any age contracted a serious illness, or was in a car accident that left them with severe brain damage - you really wouldn't "do it"?? What would you do, give them up for adoption? Maybe see if another relative would just take them in and raise them or care for them? I guess when people say this to me, I hear a very callous unloving remark towards their own children. Because a good parent WOULD do this for their child. That's all I'm doing. Trying to take the best care I can with what God entrusted me with.
Okay - now that I've probably offended droves of you, let me say that I understand most people say this with the intent of meaning - you lead a hard life. The things you have to go through and deal with suck, I don't think I could deal with it.
So I will let you in on a little secret. A lot of days I feel the same way. Some days I'm not sure if I will be able to deal with whatever is going on either. Some days I break down and cry all day, some days I am an evil dragon and scream and breathe fire at anyone with in my line of sight (ask my husband, he will concur), and some days you think I am totally fine, because I am in a numbing state - where nothing other than "I need a pepsi ...... and possibly some drugs" penetrate my mind. I usually stay out of the public eye on any of these given days. So when people see me - I am somewhat put together and functioning. That is why you may think I can do it, and you can't.
Now I realize in life, there really are some people who can't do this. Whether it be because of their own mental issues, physical issues, or financial issues, some parents really aren't able to care for their disabled children. I'm talking about the people who I know that tell me this. I want to roll my eyes and say a rude sarcastic remark ...... which I usually do ........
So - the point of my long rambling soap box issue of today: DON'T tell me you couldn't do what I do. I KNOW you! I KNOW you love your children! And I know if heaven forbid you were ever put in my place you WOULD do what I do. So don't tell me you can't. I don't like it. It leads me to get on my high horse and write blogs such as this. And possibly offend a few of you, which might lead to more sarcastic or cynical comments on my part because you got offended.

Friday, September 14, 2012

The Choices We Get

What is more important: quality or quantity? On first thought, I'd say quality. But what if that severely shortened the quantity? Would it still be worth it?
I suppose it really depends on what you're looking at. In my case, or Reese's case rather, I'm looking at medication. More specifically medication to control seizures.

The way many liss children are effected by seizure medication is to become drugged beyond much comprehension. I don't suppose this is the case with all of them, or with all medications. But these medications affect each child so differently, you usually don't know what you'll get until you try it.
  Not to mention the side effects on the poor little body that these medications incur. Not to mention the fact that sometimes they won't work at all, or many different kinds have to be used simply to control the seizures and then once again you're generally back at drugged beyond comprehension.
And added to all of this - over time, there is the strong possibility that the poor little abused body will build a resistance to the medication anyway, rendering it useless.

On the opposite hand, what do you get for not medicating? Seizures that will become progressively worse - generally doing more and more damage to the brain - until it can no longer function properly, and the poor child cannot last any longer. But before that time, they are here! They aren't drugged out of their poor little minds, except that .... sometimes depending on the severity of the seizures it can produce the same effect as being "gone".
So which is the lesser of two evils here? Using medication that may or may not keep them out of it most of the time. Along with some of the horrible side effects their little bodies must deal with, and the possibility of the body building a resistance to the medication over time. And this is what you deal with when  you're able to find one that works.
Or is it better to let the seizures go ..... hoping they don't ever become too bad. But knowing the chances are good that in time they'll get to the point that they'll damage the brain so badly it will no longer be able to make the rest of the bodily organs function how they should, and they'll just start to shut down.
Looking at it in writing - I'll tell you it looks better to just get on the medication. But from experience some of these side effects are BAD. Like life threatening bad.

Right now we're at the point where we've decided to let Reese have seizures. This after an especially harsh experience with the side effects of the last medication he was on. And guess what - his seizures have decreased since being off the medication. How's that for ironic? But I know we'll probably again get to the point where medication will be necessary, and I don't look forward to it. But I don't look forward to letting my son have seizures that will possibly end his life.

I don't like the choices I'm getting here. But these are the only two I have right now. And I'll always try to make the best one. In this case I just don't think there is a "right" one. And when it comes down to it, I really think I'll choose quality over quantity. I don't want to see my little guy suffer. I don't think I could watch that. I'll do everything I can to make him as comfortable and happy as possible - and I don't know what length of time I'll get out of it.

Sunday, August 26, 2012


There are all kinds of sacrifice; a number of ways in which it is given or done.
When I think of sacrifice, I think very much of my youngest son Reese. But not in the way of what I do for him, more of how much he has sacrificed for me and our family.
I wonder at what the situation was before he came to earth. He had to have known it would be very hard on him. That he would have challenges and trials a typical person would not encounter. Did he know how physically hard this life would be for him, how painful it would sometimes get?
Did he understand some of the things he would have to suffer through?
How did he feel knowing he wouldn't be able to do the things most other spirits with physical bodies would? Did he know that although this life is simply a dot on the timeline of eternity, when you are here living and experiencing it, it can feel much much longer.

I believe he was given a very specific calling for this life, one that would require him to come here like he did. One that in the end would result in great blessings for him.
I do believe he knew the hardships he would face here, maybe not in every detail, be he still knew his life would be very different, difficult, and limited none the less.
And I believe part of the reason he was willing to sacrifice the life he might have had, was because he knew how much his family and the people whose lives he would be in, needed him to come in the way that he did. We have great lessons to learn from our children who are so very special.
I think of how much he sacrifices with patience everyday, while we learn the lessons he is here to teach us. I think of the excessive love he must have for us, while he continues to forgive us daily of our shortcomings or wrongdoings.

My little Reese's life here will not be an easy one. He will have to suffer through many hardships and pain that we will not be able to take from him. He will always be dependant fully on our care - never being able to do anything for himself in this life.
But I still find the sacrifice he makes for me greater than anything I could do for him. He has taught us love and compassion that we may have otherwise not known. He has brought our family closer together and helped us to more literally understand giving our sorrows and burdens to the Lord when it is too much for us to bear.
He brings a constant spirit of Heaven into our home, with a light great enough to comfort all and anything if we are humble enough to feel it.
I see how much he has already taught his brothers and sister. About love, and thinking of others and meeting his needs before their own. I can't tell you how many times my children have sacrificed something they wanted or needed, because Reese was in need of something instead.
Or how much they've altered their lives to think of him, and if what they want is something he can do, or would enjoy, or is beneficial to him..
It is Charity, the pure love of Christ, that will have us sacrificing our own wants, and sometimes our own needs for others.
But something very important I've learned through my own experience - if you love someone, it ends up not really feeling like a sacrifice at all.

Friday, June 15, 2012

1st Birthday

Today is Reesies 1st birthday!! And we've made it through the first year without too many bad incidences. Reeses can now roll all the way over from his back to front, although he still needs help from front to back. He can hold his own bottle and is starting to use and grab with his hands a lot more. He is doing quite well and his neuro is always surprised and pleased with the progress he is making.
We also got a very nice 1st birthday gift (kind of) from the neurologist yesterday. He called to tell me about the results from Reeses latest EEG. Reese had to have another one done about a week ago because he started having some seizures again.
BUT - the neuro said the EEG was completely FREE of any seizure activity. He was a little amazed because most children with lissencephaly have some sort of seizure activity on an EEG even if they are not currently experiencing seizures. So that was some very good news and a happy unexpected little birthday surprise. :)

So there Wikipedia!! You can just go suck some rocks!! My little boy is doing great and the best he can, which is good enough! (If any of you have ever read the Wikipedia description and prognosis for Lissencephaly you'll understand this little rant)

Here's to the first year down and many more to come! *cheers*

Tuesday, May 29, 2012

Better than You .....

How can I say this? ......... I complain a lot, and sometimes "bemoan my fate" of having a special needs child. Or so it seems that way. Looking back on the things I've said, it almost looks like I take on the attitude of "my situation is way worse than yours, poor me, blah blah blah." And finally: I must be better than you, because I'm such a martyr!
 So you know, this is NOT how I feel at all. I simply write what my feelings are that day. You can tell by the tone of my post what my mood is that particular day, and I assure you, it changes daily!

I have come to find I am one of the most hypocritical people I know. I used to be one of those people in the background who would think: Oh here it is. She's crying about her "special" child again. -  Or: I don't care if their child is "special" they should discipline them!! - And even better: Do they think they have it so much worse than all of us?

Yes, little Reesie was sent here to teach me many, many,  lessons. Poor kid definitely has his work cut out for him.
Just so you know I have learned my lesson (or am in the process of learning it). I will not judge another parent on how they raise, discipline, and care for their children ( as long as it's not abuse of course).
And I hope all my friends will give me the same benefit. Like I said, I write how I'm feeling at that moment. And yes, sometimes I feel sorry for myself and think I have it harder than anyone else.

Reese is special, in a little bit different of a way than the specialness of other children. That doesn't mean I think your problems are any less than mine. I know what it's like to want to rip your hair out from dealing with wild, typical, messy, dirty little boys, who are simply doing what little boys are supposed to do. I also know what it feels like to be to the point where you want to smack yourself upside the head in hopes of knocking yourself out, or at least getting an amnesiac concussion after dealing with the hormonal ups and downs of a pre-teen daughter.
And sometimes I have a little extra worry, because Reese's medical issues can be so much more damaging or severe than what I am used to dealing with. But I still KNOW how it is to be worried over my other typical children too. I DO NOT think I am better than any one else, my friends and family especially. I will just have different issues to deal with sometimes. And although you may not always know exactly what I'm going through, I've never got anything but love, support, compassion, and sympathy from all of you. And I thank you immensely for it! :)

Now, I'm not saying I won't continue to cry about my problems to any and all who will listen, because lets face it, I LOVE to talk. But just know, when I go on and on about how hard I have it, I don't think I'm better than you. Maybe I'll think at that moment my problems are worse than yours, and maybe they will be, but I won't hold it against you. ;)
And I hope you won't hold it against me. I'm really not that great of a person, I'm really not any stronger than any of you. I do what I do, and get through my days because I have to. Looking the other way and pretending like I don't have the problems I do isn't even a choice here. And you all would do exactly the same thing if you were in my place, I promise. You're just as strong as me - and I get through my days just like you do. Sometimes only one breath at a time.
After all, if Reesie can do it, I certainly can! He's the one dealing with my incompetency, all the while trying to teach me what he needs to. Like I said, poor kid has his work cut out for him!
I love my little Reese Pieces, just as much as I love my other three wild animals.

Monday, May 21, 2012

Life Expectancy

So for the first few weeks of learning of Reese's disorder, the thing that made me the most upset was the "life expectancy". You know, the probably less than 10 years to live thing, but maybe 10 - 20. That was the ONE thing I could not accept, or even come to terms with. But I'm probably not alone on that, I think many parents won't accept that part of this disorder.
I also hate the seizures. They scare me to death! I don't know what to do for him, especially when he stops breathing. (By the way when that happens you do 'rescue breaths' NOT CPR, and call 911!)
Luckily he hasn't had to have an ambulance called. Just excess phlegm suctioned out that he is choking on and no air for a couple of seconds.
So anyway, through all of this I was finally able to gain some peace. I honestly, completely, 100% attribute it to prayers. My own and those offered on our behalf by our many, many friends and family.
I was finally really and truly able to forget the life expectancy and come to the realization that my darling little Reesie would be here for exactly as long as he was supposed to be.
Whether that be 5 years, 50 years, or even just 5 more days. He would not be taken one second before it was really his time to go. (That is not to say I will be able to handle it with any amount of grace, courage, or even sanity when that time comes.)

Most children with this disorder die from either uncontrolled seizures, or pneumonia. It's very easy for these kids to get pneumonia. Due to this disease, the swallowing mechanism in the throat doesn't work properly. Some children have this problem with much more severity than others. Because the swallowing function in their bodies does not work right, they aspirate very, very,easily. Aspiration is when you choke on, or throw up liquids or solids and it gets into your lungs, there by causing pneumonia. After this happening a lot it weakens the lungs, causing it to be easier and easier to get respiratory illnesses, and damaging the lungs even further.

Reesies swallowing doesn't seem to be to bad off. He can drink formula well, or liquids as long as they're thickened a little, and does really well eating baby food that is thickened a little. We have yet to try regular foods, not too sure how that will work out with him as he doesn't really know how to chew yet.
The unfortunate possibility that I have to think about daily is that many (not all, but many) children with this disorder digress with their eating & swallowing skills as they get older. And most end up on a feeding tube. Every parent I've talked to so far that has had to go that route has said it was the best decision. It made meal time so much easier for them and their child. But it is a surgical procedure, that in some cases comes with problems with the tube afterwards.
I guess we'll cross that bridge if ever we have to come to it.

And so far, his seizures have been controlled. Do you know how many types of seizures there are? There's like 50!! It's unreal! And sometimes (in the case of "Absence Seizures") you don't even know they're having them unless you watch them non-stop and know what to look for! They just stare off into space. Good grief I do that all the time myself! I think I even drool when I do it sometimes. Maybe he inherited those from me??
In hind sight, I realize now Reese was having seizures a little here and there months before we knew that he had Liss. But at the time, we didn't know that's what was happening.
He's had the one round of Infantile Spasms. Those were the ones he had to be put on medication for. The ones that are very damaging to the brain. The medication got rid of them, and he was even able to go off that medicine and not have to start any others as 'control' methods.
He does still have seizures when he gets sick. Even something as small as a cold or mild sore throat will cause him to have a seizure. But so far, they've been few and far between. Unfortunately, seizures are one of the things with this disorder that can change in a second. He can be going along just fine for weeks, months, in some cases even years with no problems, and then seizures will set in and medication to help with them will have to be found.

This is one of the hardest parts for me to deal with. All of this ......... additional problems I guess you'd say. I just feel like every new thing we have to do medically, every new problem that arises that we have to take care of, it just feels like this disease has that much more control. Do you know what I mean?
It's like the disease is gaining that much more of a hold over him, and I'm losing that much more.
But this feeling only lasts for a little while. I educate myself on whatever the newest thing is we're dealing with, probably drive the doctors insane with questions for a week, and then I settle into a 'new' routine and I get my 'control' back,

But above all of this I just love him SO much. He is the sweetest baby with the sweetest little spirit. I often wonder why I was blessed with him. Did I do something really good to be able to have him come to my life, or did the Lord just know how much we would need him?
So his length of time here isn't so much of an issue with me now. Although I do still think about it sometimes.
I will love and enjoy every second I have here with him. And look forward to an eternity together in the next life, where there is no death to separate us.

Saturday, May 19, 2012



They say when we're in heaven,
God will make you more like me

You'll walk and talk, embrace the wind ...
Your mind at last set free.

Ah, but I know different
Great truth you do impart

They see from the outside,
While I can see your heart

A heart so pure and simple
A heart that knows no sin

And on that day of judgement,
God will look at you and grin

You'll be the first to see him
The bible says it's true

When we're both in heaven,
I'll be more like you

Karen Jahnke

Friday, May 18, 2012


Most parents don't think about how or when their children will die. In the back of your mind, every parent knows it can happen, but it's not really something you think about on a daily basis. Until something happens, that makes it a daily possibility.
I can't describe how I felt when the doctor told me my precious little baby would most likely have less than 10 years to live. Although it did literally take my breath away for a moment. Can you imagine that? Being told you'll have less than 10 years with your child? Maybe 10 years sounds like quite a while to some, but to a mother ...... a lifetime is still too short with her children. He may as well have told me I only had 10 days with him for how hard it hit me, and how it made me feel. That's about how long it sounded to me.

Lissencephaly means smooth brain. Most people's brains have grooves and folds. Reese's is smooth. If you look up Lissencephaly on the internet you get a very cold, bleak, clinical outlook.
Children with this disorder have severe mental and physical retardation, seizures, muscle spasticity (super tight hard to move muscles) or hypotonia (very low muscle tone, not able to use them much or have control over them), and swallowing difficulties. Reese has all of these things.

There is broad spectrum with this disease, ranging from mild to severe. Depending on how much of the brain is smooth. Reeses brain is completely smooth, with just two little bumps of undeveloped gyri towards the front of his brain. His case was determined to be moderate to severe. Most children with this disorder seem to be moderate to severe, I haven't heard of too many with a mild case.
Many children will not develop beyond the mentality or mobility of a 5 month old.
If you look up Lissencephaly on wikipedia, it tells you most children with this die within several months of birth. Upon further investigation, you might be able to find reports of many children being able to make it into the first 2 or 3 years of life, but always coming with the hardships of severe medical problems the whole time. Like I said, cold, bleak, and not a lot of hope from the clinical standpoint.
There are also many different types of Lissencephaly that can come with a whole barrage of different syndromes causing even more medical issues for the child.
Luckily Reese doesn't seem to have any accompanying syndromes with his case. The neurologist assured me that with the advances in the medical world over even just the last five years, the life span of the children with this disorder was increasing to more like 10 to 20 years, maybe.

So the next few weeks were pretty hard. Trying to come to acceptance of this new world we were a part of. Reeses first seizures started the day after his MRI. The neurologist thought the medication used to put him to sleep for it triggered them to start. For the first week, they weren't too bad. Just one every few days. But they quickly increased to EVERY single day after about a week. Over the next short week they progressed in their length also. Finally about two weeks in he had one that lasted 15 minutes. The type of seizure he was having, although not looking too severe on outward appearances, was extremely damaging to his brain.
So although we had tried to give him some time in hopes that the little cold he had and getting the MRI medication out of his system would make them go away, it was not to be. We had  to get him on medication.
Many people think "well duh!! Why didn't you do that right away?!" And my educated defense is, seizure medication is not good for the body. It is in fact VERY hard on the body, especially one so little. But as the neurologist counseled me, it would get to the point where the seizures would be much worse for his little body than the medication would.
So he was put on an enormously high dose of a steroid (high for even an adult) to get rid of these types of seizures. Luckily it worked, and very quickly. With surprisingly mild side effects. He only had to be on this medication for a month and it was able to wipe the seizures out completely. I realize we were VERY lucky with this. This is not the case with all Liss children. Many times several different medications need to be tried before the one that works is found. Many times the children are not able to go off the medication ever, or the seizures will come back. And many times, no medication is found to get rid of the seizures, only help "control" them so they're not as violent or happening quite as often. As I said, we've been very lucky with how well Reese has done over the last 11 months.
Some people may think, well, it's only a seizure. That's not so bad to deal with right? Just lie them down, make sure there's nothing around for them to get hurt on, and wait it out. I say this because I used to be one of those uninformed people who thought I knew everything.
People can die from having a seizure. Many times liss children will stop breathing. Did you know you're not supposed to do CPR on a person who has stopped breathing that is having a seizure?
I learned about that quite quickly. Also, because of the excess phlegm problem and difficulty swallowing due to complications of this disease, Reese would gag, then choke, then stop breathing sometimes while having a seizure. Do you know how hard it is to try and suction thick gooey phlegm from deep in a babies throat while their having a seizure and their head and chest are jerking around?
I'll tell you IT'S NOT EASY! Not at all, not even a little bit.

So through these hardships of the first few weeks, adjusting to our new life I learned something very poignant. It came to me kind of suddenly, in the midst of my fears and incomprehension. And that ..... will be my next post. About my little Angel here on earth, Reese.

Thursday, May 17, 2012

Rare, Precious, and Special

So I like to talk ... a lot. And right now I have a lot I want to talk about. Only maybe not really talk about so much, as tell  about. I want to tell about my precious and special little boy so people will understand him and want to get to know him. All Children are precious and special, but sometimes a little bit more rare, precious and special child is sent to us.

Reese was born on June 15th 2011. Everything was fine and normal with him. Everything had been fine and normal with the entire pregnancy and delivery . I noticed he had some excess phlegm in his throat, but that too seemed "normal" considering the conditions a newborn baby just comes from. Over the next few days the phlegm persisted, but didn't seem to be too bad. The nurses had even noticed it, and made sure to tell me to keep him propped up at an angle while he was lying down or sleeping.
So we went home, with everything being fine and normal. Over the next few months the excess phlegm stayed, but never caused too much of a problem. I chalked it up to allergies, and didn't worry to much about it because no one else seemed to. Even though it did get a little annoying, Reesie seemed to deal with it fine.
Around 3 months of age we started noticing Reese didn't see very well. He wouldn't focus on anything and just kind of looked right through you even if you were standing directly in front of him. So at his 4 month doctor check up I brought this up. The pediatrician noticed it too, but he was still pretty young, and sometimes the eyesight didn't develop as quickly in infants. Soooooo, no biggie.
His hearing was good, in fact it was quite obvious he followed sounds and noise very well. As long as you made a noise to let him know you were there, he'd whip his head right around to look at you. And he became very accustomed to familiar voices, smiling and cooing if it was someone he knew well.

About this time he started leaning his head severely to the right. No matter how many times I adjusted and straightened it, he would bring it right back to his right side. It became pretty bad, to the point I was afraid he may be doing (or have already) damage to his neck muscles. So back to the pediatrician at about 5 months. After a thorough exam, the doctor decided that his neck muscles were pretty weak on the right side, and to continue doing what I was, trying to straighten it as much as possible, as well as watch closely and have it checked again at his 6 month appointment.
No biggie, again. These were all things that while not completely normal, didn't raise too many alarming flags.
So the 6 month appointment fell right around the holiday times. And we were VERY busy. Needless to say, I was a normal mother, and did not get him in right on time. I was keeping up on his weak muscles though.
I got him in to see a chiropractor as well as contacted a local group for developmentally delayed children.
As he was clearly delayed. By 6 months he wasn't sitting at all, not even when supported a little, and his eye sight was still ..... not good. He wasn't holding his head up at all when placed on his stomach either, and in fact HATED to be on his stomach for even a couple of seconds. Most typical children would be doing these things, or almost doing them, plus a little more by 6 months. (I say most because I know not every child does. Every kid develops at their own rate and blah blah blah. Ya I know, my point is, it was apparent now that something was not right, or close to typical with him)

We had also taken Reese to an ophthalmologist to have his eyes checked. The ophthalmologist said "yes, there is something wrong with his eyesight, and it looks like there may be something behind the lens of the left eye, although I'm not sure, because he won't hold still."
Reesie was NOT a very compliant patient. But really what did I expect. This was not a pediatric ophthalmologist, so he was used to his patients holding still. Plus he had put that stinging solution in his eyes to make them as huge as saucers as well as some tortuous looking contraption that held his eyelids very wide apart. He got us an appoint with the Moran Eye Center (the specialty eye clinic in our state) .... for 3 months down the road!! Apparently he didn't have much pull with them.
So ..... what was this "thing" that he may or may not have in his eye? No one could tell us. That was kind of frustrating. Although the pediatrician did mention doing an MRI if more developmental progress wasn't made within a month or so.
On to the chiropractor (who has been AMAZING by the way). He didn't feel comfortable working on Reese without knowing what this vision impairment may or may not be. Because we had traveled quite a ways to see him, he called in a few favors and got us in to see a pediatric opthamologist who was a friend of his THAT DAY! :)
We did that, found out his eyes and the nerves around and behind them were perfectly formed. There were NO obstructions at all. And many children who had this eyesight problem, was because of a simple developmental delay. Consequently, the not being able to see very well, made perfect sense as to why he was also possibly delayed in other areas too.
So we continued happily along to the chiropractor, who adjusted him, mentioned it looked like he may have a mild case of scoliosis, which he could help immensely with regular chiropractic visits. And miraculously enough, his eyesight improved noticeably after that first chiropractic adjustment.
We were quite happy with all of these diagnoses.

So along came January and month and a half late checkup. Reese was 7 1/2 months old by this time.
After checking him over and hearing the other diagnoses, his pediatrician was more adamant about doing an MRI. As Reese still hadn't had any developmental milestones. I brushed it off a little and said the ophthalmologist wanted to see him again in 3 months and if his eyesight wasn't significantly better, then do additional testing, including and MRI. The pediatrician told me (albeit a little begrudgingly) if I really wanted to wait 3 more months, to see if any progression was made, that was my choice. We finally agreed on giving him another month to see if he progressed at all.
Later that week Reese had his first appointment with a physical therapist from the developmental group I had signed him up with.
Her assessment was that something was neurologically wrong, and we should get him to a pediatric neurologist ASAP.  So I called the pediatrician back to get his input. He thankfully pounced on my indecision of the moment, now not being so sure of what to think (me not being sure, not him), and said he would call Primary Childrens Hospital (the specialty hospital in our state) and get him an appointment with a neurologist as soon as possible. He was hoping with in the month.
His nurse called me back the next day to say they had him an appointment for the following week. While I was impressed and a little astounded at their accommodation to help so quickly, I was also a bit worried. What did they think was wrong that they needed to see him so quickly?
So to the neurologist we went! As luck would have it, the very day we saw the neurologist, the radiology department had a cancellation, therefore an opening that day. So Reesie was able to get his MRI (which the neurologist said was VERY necessary) that same day.
The wonderful doctor we would now come to know very well was an earthly angel in disguise. He didn't make us wait the normal 2 weeks to get the results back, or even a less standard and more appreciated week. He didn't even make us travel all the way back out to Salt Lake ( a 2 1/2 hour road trip) to meet with him again. He called me back the very next day with the diagnosis. It was a very rare (and of course non-curable) brain disease called Lissencephaly.