Update from Neurologist

We don't exactly have any answers. We saw the neurologist today and basically are back where we started. Waiting for an EEG. The neurologist did not feel like his behavior was definitely seizure activity but also did not feel like it necessarily wasn't. So what that boils down to is us trying another EEG to see if we can catch the activity. This time we will do it without sleep deprivation, during a feeding time(since that is mainly when we see it), and for a longer time period. This will closely simulate the scenario that we most often see it.

Sadly, the first EEG they have is May 13. We will try to get in sooner from a cancellation( that worked well the last time :)) and I plan on talking to my pediatrician tomorrow about some other options.

I am frustrated simply because we really don't know much more at all then before we even got the process started and for now still have to wait a while to get any further answers. We REALLY need him to have the behaviors we're seeing during this next EEG so we can determine if they are seizures or not. It feels a little bit like stabbing in the dark to try to catch it.

The doctor did mention one possible thing that it could be other than seizures that involves his reflux and odd posturing and muscle tensing to try to control it. I don't have a very good understanding of it yet to feel like it's a high probability but we certainly would love it if all that was required was more aggressive reflux treatment. We have recently been feeling like we could probably wean him off his meds for that because we felt like it has gotten better so it doesn't make a lot of sense to us to be that but maybe it is.

So... back to the waiting period. I am SOOO not good at it but I'm trying. And to be honest, I'm really disappointed and discouraged right now. As frustrating as is, I know that this is still God's plan for us and for Cohen. While it doesn't make sense to me, I know He sees the big picture. I know He's in control. I'm trusting that His timing is always perfect. He makes no mistakes.

Thanks so much for praying for us. Hopefully, I'll be posting soon about a new EEG date from a cancellation!!!

More News

So, I got to talk to my pediatrician today, and can I just say, that it is just so awesome to feel God move so clearly in all of this.

After being told, quite specifically, by several different people, that we would NOT get to see the neurologist until mid May or later unless Cohen's EEG came back abnormal...

....we are seeing the Neurologist in APRIL( still Thursday at 1pm) and his results came back NORMAL.

Now, don't get too excited, that doesn't mean he isn't having seizures,just that he didn't have seizures when the EEG was being done... which doesn't surprise us because we didn't see the behavior that was concerning us during the EEG. But, what it does mean, is that God is totally paving the way for us to get seen quickly. Not to mention, that the neurologists are totally being proactive and seem to be taking us seriously.

Can I also just say that really the way we found out about it all was just totally God protecting my heart as well. One of the things I was really struggling over through the weekend was that I felt certain that since we didn't see any activity during the EEG that his results would be normal and therefore we wouldn't get seen soon. This was eating at me so badly and I found myself already getting worked up about ( silly, I know, but true). So as nerve racking as it was yesterday to find out first that we had an appointment this week but not know the results for sure, it was totally best... If i had found out yesterday first that the results were normal, I really I think I would have been so angry - not because they were normal but because I would have assumed
we weren't getting seen. Finding out in "backwards" order really was such a sweet gift - God knew I needed it and am thrilled he chose to oblige :)!!!

On another note, finding out the tests were normal, wouldn't have typically been a relief to me since we knew we hadn't seen what we were concerned about in the EEG, and I would have really wanted the doctor's to have seen it too. However, last night, I totally let fear grip me once again, thinking that his tests were abnormal and that he was seizing even when we couldn't outwardly see it. The idea that he was possibly doing it even more frequently that we thought just crushed me. So, the normal tests results served to alleviate that fear and come as quite a relief.

What I do know about why the neurologist decided to see us, has something to do with his arm movements being a little jerky during the videotaping of the EEG. I think I know some of the things she is referring to and they don't instantly bring alarm to mind. Keeping in mind that apart from that video, she has never seen Cohen or even heard anything about his diagnosis and physical disabilities, I am not extremely worried about this. Cohen's movements are not nearly as smooth or easy as yours or mine. She may have noticed something that we wouldn't pick up on though, so I am interested in seeing what she has to say about all of that. Also, it makes me feel like she is very observant and that Cohen will be receiving excellent care if she's willing to bring him in for that to make sure he's okay even though he had a normal test result.

We have our concerns documented on video so we know we'll be able to address our concerns when we go in even though the test didn't show anything. I am beyond thankful that we are getting that chance so quickly!!

Thanks so much for your continued prayers. I know I'll grow nervous as we approach 1pm on thursday but also know that, just like as always, God has gone before us. He won't be surprised by what we hear. We trust him because He is God, He is Good, and He loves us.

Some News

While I did not hear directly about the results today ( this didn't surprise me since Dr. S. doesn't work on Mondays), I can pretty much assume that they came back abnormal because I got a call from neurology today giving me an appointment this Thursday at 1pm. ( the call from the neurology is just from a scheduler, they can't give me any information since we aren't established patients yet)

On one hand, we certainly are relieved and thankful to be seen so quickly. Since we knew, without the results, that something was going on, we are thankful that the road has been paved to get us in as quickly as possible.

On the other hand, I'm terrified and Thursday still seems too far away. And though, as his mother, I think Cohen needed to be seen days ago, the fact that they seemingly feel he needs to be seen rather quickly makes my heart race a bit. The fact that without us having seen any outward symptoms in Cohen during the EEG, they seemingly saw something on the EEG makes my mind go places I wish it wouldn't.

In spite of the fear, I do know that God is near. I do know that he is holding us and sweet Cohen in His hands. And I do know, that these are the plans that God has for Cohen. There is comfort, even in my fear.

In two and half days, we will hopefully receive some answers. I'm praying now that God prepares my heart for whatever those answers will be.

In the mean time, though it isn't exactly in the post I intended, I'd like to share Cohen's first year slideshow pictures, thanks to Kim...

They put a smile on my face, hope they do the same for yours!

Came to My Rescue

For the earlier part of this week, I guess I have been in that mommy mode of " take care of things." I was so thrilled to get in early for the EEG and felt so relieved to be doing something but as the days have passed and we are approaching getting results, I have found myself being anxious, nervous, and down right scared.

Each night I lay sweet Cohen down and I find it hard to walk out of the room. To just leave him there and to not be doing something RIGHT NOW to FIX THIS. To go about my night and get up the next morning like nothing is happening. To not know exactly what he's feeling when it happens. To not be able to stop it.

I've been here before, having no control, just waiting to see what's going to happen. Yes, I've been here before in even a more desperate way. I should know how to do this. To give it to God, to let it go, to trust Him that He is all we need. That He is all Cohen needs.

Yes, I've been here before.

I don't want to be here now.

But I've been here before and found peace.

I am praying for peace now.

I've been here before and felt God's presence.

I am trying to be still.

I've been here before and He came to our rescue.


That song, Came to Our Rescue, has played an intricate part in our story for me. I sang it in worship at church during our pregnancy, praising God for saving us, laying Cohen's life at his feet, it's words bringing hope to my soul as tears would flow from my face. We sang it at Cohen's first Concert, praising God for his desire for perfection, rescuing us from this broken world, and praying that for our son. We sang it at the Concert With Cohen for the very same reasons. And we sang it this morning in church, and it's truth laid heavy on my heart.

Falling on my knees in worship
Giving all I am to seek your face
Lord all I am is yours

My whole life
I place in your hands
God of Mercy
Humbled I bow down
In your presence at your throne

I called you answered
And you came to my rescue and I
I wanna be where you are

In my life be lifted high
In our world be lifted high
In our love be lifted high

He has already rescued us. Years ago on a cross. He has already rescued us. Last year when Cohen's cry filled the OR. He will rescue us now. Even if it's not how we hope.

My whole life I place in your hands. Will your pray that for us? That we lay our WHOLE LIFE in His hands. That I would stop holding Cohen's life in mine. It's too heavy to bare and God never intended for me to bare it. Did he entrust Cohen to us? Yes, he did. But Cohen's life is only to be what God intends it. God is not surprised by any of this. When God saved Cohen last year, He knew that I would be sitting here tonight struggling and wrestling with Him over this. He knew that fear would grip me and He knew that I would once again return to my knees, from where I never should have left.

God is not surprised by this. So he won't be surprised at what tomorrow or the next day brings.

This is from a post I wrote at around 30 weeks in Cohen's pregnancy:

The morning before our regular OB appointment ( two days after the specialist) I was just having such a hard time with the fear and just overwhelmed by all the things we had to do and the decisions we had to make. This OB appointment seemed so important because it was were we were hoping to get some answers about possibilities of future monitoring and delivery decisions. A friend of mine shared a verse with me she came across in a quiet time on New Years Eve.


" You will not leave in a hurry, running for your lives. For the Lord will go ahead of you; yes, the God of Israel will protect you from behind." Isaiah 52: 12


What a great reminder to me of our wonderful God. It is foolish for me to worry about what lies ahead - God is there waiting for me already. If I truly trust in Him and in His love for me, I have no reason to fear - for whatever happens God has gone ahead of me - His way prevails - His way is always better than mine no matter how hard that is to swallow at times. I also often fear looking back and regretting doing or not doing something right for Cohen - again how foolish, God not only goes before me but also protects me from behind. He is my protector from all angles.

How blessed and undeserving are we to serve a God like this?

EEG News and a New Niece

I am super sorry I am just now getting an update. We went straight from the EEG to Athens yesterday because our new niece was on the way. We just got back this afternoon. I had thought I'd update from there but we didn't really end up with the means to.

First, let me introduce you to our super cute new niece, Lilah Allison...


Lilah was born late last night and was 7lbs 6oz. Jessica( chris' twin sister) was such a champ and I am so proud of her. She labored for over 24 hours and pushed for I think around 2 hours - if not a little longer!!! It was so sweet to hold Lilah and I can't wait until I get back to see her again soon!!

As for the EEG...

Cohen is such a trooper. With the instructions to keep our little guy from sleeping anymore than 6 hours, we tried to break up his routine a little bit. Typically he goes to bed around 7:15 or 7:30 and is ready for it. To break up the routine, we decided to go out to eat and then walk around the mall a little bit. This of course kept Cort up a little late too but he felt like it was a fun, special treat.

We returned home and bathed the boys around 8:00 and put Cort down. We let Cohen have extended "naked time" since he likes it so much and this got him easily to about 8:45. I felt pretty certain if we could get him over the hump of his usual bedtime he'd sort of get a second wind and he did. We put on his jammies and put him in the exersaucer, where he actually played until about 9:30 or so.

At around 10pm we got into our bed with him with a bunch of toys and put on a movie for us.

He was pretty content with this and around 11pm we gave him his bed time bottle and let him go to sleep. I think he fell asleep around 11:30 and we did shortly after as well. We set our alarm for 4:30 and got him up around 4:45. So he got a little over 5 hours. He was pretty grumpy when he woke up but came out of that quickly. We fed him breakfast and then got busy getting ready for the day and to go to Athens. He was in quite a daze for most of the morning but not too cranky.

The EEG , itself, went well as far as how Cohen handled it. We do not know results yet and won't know them until probably Monday or Tuesday of next week. I feel okay about waiting for those at this point.

Cohen was such a trooper. He didn't fuss at all about getting all the equipment on. I can't say that I would have been nearly as agreeable as he was to this...


The EEG lasted about 45 minutes. We played, fed him a little, and he took about a 20 minute nap. He wasn't has content with them taking it all off as he was putting it on but still did pretty good. Chris and I did not see any of the activity that concerned us during the EEG. That doesn't necessarily mean they will or won't see it in his brainwaves but it does make me nervous. If there is a something to be concerned about and the EEG comes back normal simply because of the fact that it didn't happen to catch anything, our wait to get in with the neurologist will be much longer than if it come back abnormal. It's weird because I seem to find myself hoping it comes back abnormal, not because I want him to be having seizures but because I feel so strongly that something is wrong and that we need answers - an abnormal EEG will the be the quickest way to move in that direction. If it is normal, it won't really do much to calm our concerns, just make us wait longer to get them addressed.

We're really tired and this point just trying to patiently wait. I think I'm a little too exhausted to even know how I'm feeling about it all.

What I do know is that God knows what's going on, I know that God knows what Cohen needs, I know that God didn't orchestrate Cohen getting this EEG so quickly for no reason, but I know that just because God knows, doesn't mean I get to know sometime soon or even at all. I know I need to be okay with that. God knowing needs to be ALL I need to know.

Feeling God work already

So the news today started with just a lot of waiting. I was able to talk to Cohen's pediactrician( she wasn't in yesterday) on the phone today. She reiterated for me that as frustrating as it is that the wait is unfortunately VERY long for getting in with the nuerologist. I had been prepped by several people to not even expect to hear from them soon. But that Dr. S( our pediatrician) would try to get an EEG scheduled within the week apart from the nuerologist and if there was an abnormality it would speed up the process of getting in with the nuerologist.

Well, I heard from the nuerologist TODAY!!! The news wasn't great but the fact that I even got a call today was a answered prayer- they weren't even giving me an appointment time yet and said that it would be a week before I would even get a call about a consultation appt. that would probably be far out from that as well. They were calling to schedule their EEG so that they would know if he needed to be seen sooner but the soonest they had an EEG opening was May 7. I very reluctantly accepted it, knowing that Dr. S was trying to get me in sooner at the hospital. She tells me she can put me on their cancelation list and that it could get me in a LITTLE sooner.

Fastforward, just 15 min., and the nuerologist office calls me back to say they have a cancellation...are you ready for this.. tomorrow morning!!!!!!! We are going in at 7:45 for his EEG. This is so God. I mean I really don't think there was anyway we were first on that cancellation list!! Praise God!!!!

The biggest hurddle for us right now is that Cohen is allowed to sleep for a maximum of 6 hours tonight!! This should be interesting for sure!!! We are already quite exhausted so pray we are able to stay awake to keep him awake. Thankfully, he can eat.

Please pray that the EEG gives us some answers. Quite frequently, answers to concerns and questions we have about Cohen are, "we don't know." If the EEG comes back normal, we will have a long wait until we see the nuerologist and can figure out what might be going on and if it's abnormal

On other news, Stellan is out of surgery, and while the surgery wasn't as successful as they hoped as far as fixing his heart, he is doing well and as come through the surgery. We are praising God for that too!

AND our neice, Lilah Allison, should be making her apperance tomorrow and we can't wait to meet her. Please pray for Chris' sister, Jessica, as she prepares for her daughter's birth. We're excited to add a girl into the McGowan mix.

Dependence Again

Many of you my have already caught wind of everything going on with us right now but we wanted to throw a post up to let everyone know some more specifics and to ask for your prayers. We also want to apologize to anyone who is finding out through the blog that we would normally contact personally. It's been a long day and I have hardly made a phone call for answering phone calls. We love all the support and prayers - really - but just can't physically contact everyone in one day.

It's not the same, not by any means, but when I sat down to title this post the only thing I could think of was the same thing I thought of when we first got Cohen's initial diagnosis.

We have learned more about dependence this past year and a half than is comfortable really but it's not a bad place to be, we know that. I have written often of the sweet peace that came for us in Cohen's pregnancy while we depended so completely on God for His will for Cohen's life.

God gave us a sweet miracle in Cohen, and while it's been tempting( and we've even given in to at many time, unfortunately) to take back the control once Cohen was place in our hands, we try to continue to depend on God, to trust Him with Cohen, to hand him back to him, even though he lets us hold him in our arms everyday. We try... but is hasn't been easy. We are currently in a place of having to fight hard to not try to take control of things, to not worry and instead, to trust God...

This weekend it became clear to us that something was off. We believe that Cohen is most likely having seizures. In hindsight, it has probably been happening over the past 2 weeks. They are very mild, almost dismissible, but over this past week and this weekend it has become more apparent. They are not the typical seizure that most people think of - he does not have any convulsions or anything like that. But instead it involves mainly just some eyelid closing and fluttering and occasionally some arm extension. They last for just seconds and then he continues on with whatever he was doing before. He does not seem to be overly bothered by it. For whatever reason, it is happening mainly at meal times.

We videoed it this weekend and I took him to the doctor this morning. They agreed about our concerns and we went straight to the hospital for a CT scan to rule out fluid as a possible cause. We went hoping to do it with out sedation and to be fit in into the schedule. This is where we already felt prayers answered as we were seen pretty quickly( which was great with a very sleepy child) and he cooperated great to not need sedation. Sedation is always a risk and concern for Cohen plus if we had to sedate him we would have just had to come back late in the afternoon to do and not have allowed Cohen to eat ALL DAY. We are very thankful that we avoided all of that day!!!

The CT results pretty much came back clear. There was some mild ventricular megaly noted - which mainly just means that there was a little bit of extra fluid in his ventricles but not outside of a normal range for his age. It's good to know because it's something we can know to continue to monitor, as this can be a common issue with children with dwarfism, though it has not thus far been a concern for Cohen, and can increase to a point of it being a problem. What this basically means for now is that there was nothing in the CT scan showing the cause for seizure like activity and will now wait to see a neurologist and have an EEG done. We do not know at this point when exactly either of those are happening. The neurologist may decide to do an MRI and we would have gone to that next if the CT scan had come abnormal but for now, the next step is up to the neurologist.

Seizures have not been something that has been brought to our attention as something to look out for. They are not something that we have been informed is typical with the diagnosis of odontochondrodysplasia, though I don't know if there is a "typical" when you share your diagnosis with only 12 other people in the whole world. We have plenty of questions bout the implications of this but we'll get there later.

So... at this point, we wait. We wait and we trust God to take care of our son.

In the meantime, we certainly would appreciate your prayers. Specifically:

1. Ultimately, pray that the seizures or whatever they are would resolve themselves. (or rather that God would resolve them :))
2. Pray that we will be seen quickly by the neurologist.
3. Pray for a quick diagnosis, answers, and effective treatment.
4. Pray that the seizures activity does not increase or get more severe.
5. Pray for peace and calmness of us as we wait.
6. Pray that we will continue to trust God, and that as in everything before, that this to will just be a part of Cohen's journey that further brings glory to God.


And while your praying for us, if you wouldn't mind, to please say a prayer for another little miracle boy, Stellan, who I have mentioned before, and whose heart has been very sick. He will be undergoing a very risky surgery either tomorrow morning or possibly even tonight. Click on the My Charming Kids link on my blogroll to follow.

( there are some adorable( in my biased opinion) Easter pictures in a post below if you haven't checked them out...:))

Easter

Once again, I'm super behind and I have 3 other posts waiting in draft that I just can't get around to putting the finishing touches on....hopefully they will come up soon.

We had a great Easter weekend. We went as a family to our church Good Friday service. It was wonderful and very worshipful. We spent lots of time as a family outside over the weekend and then had a great day celebrating our risen Lord on Sunday. It was neat to see Cort begin to "get it" a little bit. Church was nice and then we spent the afternoon out in the yard again. Our friends, the Haff's, came over in the afternoon and we did a little easter egg hunt for the kiddos and then had dinner together.

I'm not sure if this will make sense to anyone, but it was nice to celebrate Easter for just exactly what it's for this year....last year my original csection date was scheduled for Good Friday( and have I ever mentioned that while we were scheduling it - the country song "one more day" was playing in the background, the scheduler didn't know about our situation at first, and I was bawling... it was quite a scene), and though we ended up having him 3 weeks before that, we brought him home on Easter(and Chris' bday)... that really was a sweet time and just so worshipful to do, but it was nice this year to just celebrate Jesus ( as a family of 4 of course!!!).

And for your viewing pleasure....

Lots of firsts in this 13th month!!

There have been lots of firsts during Cohen's 13th month. I have to tell you it feels so weird to be counting up from one and already heading to two. I wonder sometimes if his Birth day will ever feel longer ago then yesterday.

It's been a fun and busy month. With is birthday, family visits, Daddy's birthday, and countless doctor appointments its been full.

Cohen has continued to sit up for longer periods of time and has gotten quite good and keeping his balance. He still has trouble catching himself if he does lose his balance but is able to lean down to pick up things and come back up, look up, and twist from side to side without falling on many occasions.

There have been lots of improvement with eating. He has been eating more and more "table" foods and less purees , though we do still depend on purees to get enough calories in. We are down to two bottles a day. One in mid morning and one before bed. The mid morning bottle is really more for convenience because we are often out at that time, either at therapy, a doctors appointment, or church. "Snack's" are a bit time comsuming and right now consist of things that are typically spoonfed so the bottle is just easier. I still give him the bed time bottle simply to give a few more calories, fat, and liquids intake. Also, because he hasn't been sleeping through the night that long and I just don't want to mess with it!!! But he shows more and more interest in our food and has begun to willingly fingerfeed a little more. He won't feed himself off a spoon but loves to play with one! He will often stare our utensils down until we give him one of his owns. I love how he inspects everything he hodls so carefully, like he's doing in one of the spoon pictures below.


He's a bit finicky with the sippy cup and seems to prefer a straw. A straw is also easier for him because the sippy cups are so big and heavy for him to lift at the right angle. He will lean forward to drink from the straw on his own some and will hold it if I make him :).

One of the biggest new things this month was some of his first really intentional communication. He began to shake his head "yes" when you ask him if he wants to get up. This really is more like a sign for "up" as I was shaking my head "yes" when I would say " Cohen, do you want to get up? Yes? you want to get up?" in trying to reiterate the word up. He picked up on the head shaking and will do it in response to that question or in request on his own. It's fun to see him begin to communicate. He continues to babble a lot but no words just yet.

He has started tolerating more weight bearing and is spending more time in the exersaucer and the jumper.

He still loves his baths and has started splashing with his hands and arms a lot. He used to always just get us soaked with just the kicking and so now we're really in trouble!! :) This boy also loves some freedom from the clothes after the bath!!


Cohen isn't going to know what to do without a balloon in the house. There has been some type of balloon here between his birthday, Chris' birthday, and cort's haircut. He loves playing with them.

Finger Painting

Cort has always loved crafts....

It looks like Cohen will follow in his fingerprints footsteps...