Saturday, August 13, 2011
Monday, August 8, 2011
It's almost birthday time!!
Our little Nick will be 1 year old on Saturday! We can't believe it, time has flown by! We will be having a little party for him on Friday evening, so...if you live in the area and want to stop by we would love to have you! Just send me a message and I'll send you our address if you don't already have it.
Sunday, July 24, 2011
MRI results
So we got the MRI results back and there was some good news and some not so good news. The good news is there are no longer any cysts anywhere in his brain. But the not so good news, his lateral two ventricals are looking larger than normal. His neurologist thinks this could be for 1 of 2 reasons: 1. They are swelling from too much fluid, in which case they would probably need to put a shunt in to help drain the fluid or 2. He brain is developing abnormally and they just look larger but that's just how his brain is. We have to see a neurosurgeon in a couple weeks to do more testing and determine what is actually going on. His neurologist does not think its emergent but he does need to be seen soon. And some more not good news, his pituitary gland is still abnormally small. His neurologist was hoping it would grow or change somehow from his first MRI but there has not been any change. She ordered some labs to be drawn and depending on the results we will have to see an endocrinologist as well. Just two more specialists to add to his list of doctors.
We will now more in the next couple of weeks and I will try and update as often as possible.
Also, I need to ask for prayers for our family right now. We are going through a pretty stressful time (for reasons I will talk about another time) and we need all the prayers we can get. Thanks so much for all the support!!
We will now more in the next couple of weeks and I will try and update as often as possible.
Also, I need to ask for prayers for our family right now. We are going through a pretty stressful time (for reasons I will talk about another time) and we need all the prayers we can get. Thanks so much for all the support!!
Friday, July 15, 2011
So Nick had his follow up MRI today and he did good. They had to sedate him with gas and intubate him so he's a little hoarse sounding and a little groggy but he's pretty much back to himself already.
His therapies (PT, OT, vision) are going well and he can almost hold his head up completely by himself but never for very long because he gets tired quickly. We try and do a lot of tummy time but his OT thinks he has low muscle tone in some of his neck muscles so he will continually have to work against that to get his body to do what he wants.
I am somewhat worried about his feet, they are pretty small and seem to grow very slowly. His neurologist mentioned he might have an abnormal pituitary gland which could cause hormonal problems, we will know more next week.
I can't believe he will be one next month! Time goes by way too fast!
His therapies (PT, OT, vision) are going well and he can almost hold his head up completely by himself but never for very long because he gets tired quickly. We try and do a lot of tummy time but his OT thinks he has low muscle tone in some of his neck muscles so he will continually have to work against that to get his body to do what he wants.
I am somewhat worried about his feet, they are pretty small and seem to grow very slowly. His neurologist mentioned he might have an abnormal pituitary gland which could cause hormonal problems, we will know more next week.
I can't believe he will be one next month! Time goes by way too fast!
Thursday, June 30, 2011
Firsts!
Well I tried to post to the blog a new way and it got all jumble up as some people let me know....sorry about that. Blogger has a way to post from your phone somehow butI won't be doing that again....well at least until they fix whatever issues they have.
Anyways, Nick got his first new teeth a couple weeks ago and the next week he got his first haircut! He looks like such a big boy now! A lot of people tell us he looks a lot like Ben did when he was that little....so cute!
Not much else has been going on except we've had 3 birthday's this past month. First Brianna turned 6! I can't believe my little princess is already 6! Then I turned 26 and Joe turned 31! Ben's birthday is next month and Nick will be 1 in August! Whew! time does fly! It's hard to imagine where we were at this point last year and trying to figure out what was going on with our little Nikolas but God has really led us down a wonderful path and taught us so much and our faith has grown so much stronger because of the trials we have been through.
We can't wait to take the kids and Nick to see fireworks for his first time! He is just going to love them!
Happy 4th to everyone! We hope you have a wonderful weekend!
Saturday, June 18, 2011
Saturday, May 28, 2011
Long needed update!
Sorry for the long delay in posting! We have been very busy with school ending for Brianna and my semester finals and Nick being sick with a cold etc.
Nick had an ear infection and I am sure a little cold that started to get worse and every morning he has been so gaggy. He will wake up gagging, which leads to throwing up. When Nick throws up some of it usually ends up in his maxillary sinuses which causes more mucus to drain down his throat and in turn that causes him to be more gaggy and causes more throwing up....it's a horrible cycle and it landed us back in the hospital again because he was aspirating and turning purple one morning. They sent us home the next day and figured it is just due to the drainage going down his throat and to give him saline and suction him and hopefully that would help...great. So we've been doing that every morning for the past 2 weeks. It is strange though because it only happens in the morning then he's pretty much okay the rest of the day. He did develop a cough but it seems to be finally getting better.
He also saw neurology and his opthamologist earlier this month, and his pediatrician on Thursday. He is up to 19.9 lbs! He is so chubby :o) I love every inch of his chubbs, actually it looks as if his cheeks are overtaking his face sometimes!
His neurologist also informed us that he is classified as having epilepsy, because of the way his brain is structured and having seizures for more than one day. So we'll continue with the Keppra and hopefully he won't have any more seizures. She said that if he is seizure free for one year then she will consider taking him off of it.
Also, his opthamologist doesn't think there is much change in his vision or the structures of his eye's since we saw her 6 months ago. I think he can see better though. Sometimes when I walk up to his bassinet and he's just laying there looking around he will notice me, of course I don't make any noises and try to see if he is really seeing me or just a shadow. He loves to smile so it's hard to tell if he's smiling at me or if he thinks he sees something else funny. Either way, I just love his smile. Every morning he wakes up smiling, he is such a ray of sunshine!
I can't think of anything else right now, but I know there is much more I need to add. I hope everyone has a wonderful Memorial Day!
Nick had an ear infection and I am sure a little cold that started to get worse and every morning he has been so gaggy. He will wake up gagging, which leads to throwing up. When Nick throws up some of it usually ends up in his maxillary sinuses which causes more mucus to drain down his throat and in turn that causes him to be more gaggy and causes more throwing up....it's a horrible cycle and it landed us back in the hospital again because he was aspirating and turning purple one morning. They sent us home the next day and figured it is just due to the drainage going down his throat and to give him saline and suction him and hopefully that would help...great. So we've been doing that every morning for the past 2 weeks. It is strange though because it only happens in the morning then he's pretty much okay the rest of the day. He did develop a cough but it seems to be finally getting better.
He also saw neurology and his opthamologist earlier this month, and his pediatrician on Thursday. He is up to 19.9 lbs! He is so chubby :o) I love every inch of his chubbs, actually it looks as if his cheeks are overtaking his face sometimes!
His neurologist also informed us that he is classified as having epilepsy, because of the way his brain is structured and having seizures for more than one day. So we'll continue with the Keppra and hopefully he won't have any more seizures. She said that if he is seizure free for one year then she will consider taking him off of it.
Also, his opthamologist doesn't think there is much change in his vision or the structures of his eye's since we saw her 6 months ago. I think he can see better though. Sometimes when I walk up to his bassinet and he's just laying there looking around he will notice me, of course I don't make any noises and try to see if he is really seeing me or just a shadow. He loves to smile so it's hard to tell if he's smiling at me or if he thinks he sees something else funny. Either way, I just love his smile. Every morning he wakes up smiling, he is such a ray of sunshine!
I can't think of anything else right now, but I know there is much more I need to add. I hope everyone has a wonderful Memorial Day!
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