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...:))