So..minus the slight bronchitis set back for me since we've got home...I've been so excited with the progress we made in Denver.
Wednesday they informed us that he had no seizures while we were in the hospital...of course not why would the kid do something that convenient! :) However, they did see more discharges but they were rare. His EEG is still considered abnormal though.
As far as the discharges go. Chelsea explained them in a way like his brain turns on a switch to have a seizure and then quickly shuts it off, therefore not having one, but the trigger is still there. She said this is very promising because it means that his meds are keeping him under control.
She said that she will have to tweek them as he gets bigger and needs more, but her goal is for him to be seizure free for 2 years and then wean him off his meds. However, that means no seizures, not even 1 seizure. But we will get there. I have hope now.
She kept saying that she was so excited and couldn't believe how well he was doing! So she decided that we didn't have to be back to Denver in 3 weeks, but instead 3 months! MONTHS!!! Can you believe it?!?!
Instead in 3 weeks we will had to Omaha, to get in 2 more treatments with our favorite speech therapist, Jen. I'm hoping we are close to no NG by then. He's taking 3 oz orally 3 times a day. I have to get him worked up to 4 to get him off his bed time feeding, but I'm hoping that he will continue to do well and Monday we will start 4 oz with meals and at bedtime. I just need him to suck through a straw, but hey...if that's the worse thing he's not doing...FINE BY ME!
The big boys are bummed that they don't get to go out to Denver with us, but they will live. They were happy to see us home!
Saturday, July 30, 2011
Tuesday, July 26, 2011
Lighter
If you could see my face today, you'd see the large smile that is on my face.
Last night was another long night, but it is more so because I wasn't feeling well and I was crammed on a little bench type bed with my ginormous husband. Chris slept well.
The epileptologist rounded on Chris this a.m. after going over his EEG and they reported that he had been seizure free, but had what they called discharges from the back of his brain. YAY...we got location! :)
These discharges...if i understand right..are the brains attempt to trigger a seizure, but it doesn't get to a full blown seizure. This made me happy and the epilepsy team happy, because he is still having triggers but it's not getting to a seizure. They said that this is most likely because his meds a right where they need to be.
They have been very happy with his progress and at first we were going to have to be back here in 3 weeks, but they changed it to 3 months! :)
They said that his control is good right now and they are very happy with his progress. They will keep him until tomorrow to see if he has any other activity.
Last night was another long night, but it is more so because I wasn't feeling well and I was crammed on a little bench type bed with my ginormous husband. Chris slept well.
The epileptologist rounded on Chris this a.m. after going over his EEG and they reported that he had been seizure free, but had what they called discharges from the back of his brain. YAY...we got location! :)
These discharges...if i understand right..are the brains attempt to trigger a seizure, but it doesn't get to a full blown seizure. This made me happy and the epilepsy team happy, because he is still having triggers but it's not getting to a seizure. They said that this is most likely because his meds a right where they need to be.
They have been very happy with his progress and at first we were going to have to be back here in 3 weeks, but they changed it to 3 months! :)
They said that his control is good right now and they are very happy with his progress. They will keep him until tomorrow to see if he has any other activity.
Monday, July 25, 2011
End to a long day...
We are at the end of Day 1. Man it's a long day sitting here staring at each other, watching a 19 month old bounch off the walls. He's walking around with wires sticking off his head and a back pack on. They have a black thing around the wires to keep them contained so at times he looks like a little sumo wrestler going to school!
We don't have much back yet. They got his lab drawn...if I didn't say that earlier...and so we will just wait to see what they say in the a.m. Supposedly they will give us a little synopsis as to where we are at this point tomorrow a.m.
I'm not praying at this point to not have any seizures. I'm praying for answers. Although no seizures would be a fantastic bonus...I have to be realistic.
We got an amazing surprise today from Amanda that brought tears to my eyes. It was a little message she submitted from the hospital's website. Chris liked the lion on it and it was great to hear words from back home. One thing about our stay in Omaha was friends and family could come visit us. In Denver, all we have is Amy...who's swamped and Lisa in Cheyenne. Needless to say, the quick note was such a pick me up in this tiny lonely room!.
There is another family here from Hastings, some where in this hospital. I wish I could hunt em down!
We don't have much back yet. They got his lab drawn...if I didn't say that earlier...and so we will just wait to see what they say in the a.m. Supposedly they will give us a little synopsis as to where we are at this point tomorrow a.m.
I'm not praying at this point to not have any seizures. I'm praying for answers. Although no seizures would be a fantastic bonus...I have to be realistic.
We got an amazing surprise today from Amanda that brought tears to my eyes. It was a little message she submitted from the hospital's website. Chris liked the lion on it and it was great to hear words from back home. One thing about our stay in Omaha was friends and family could come visit us. In Denver, all we have is Amy...who's swamped and Lisa in Cheyenne. Needless to say, the quick note was such a pick me up in this tiny lonely room!.
There is another family here from Hastings, some where in this hospital. I wish I could hunt em down!
Denver Check In
We got checked in this morning bright and early! We were here by 715 and they had us up to our room shortly after.
Chelsea came and met with us again and visited about his history and when I said that we have been abscence seizure free since the end of June...mind you they are easy to miss if you are running around taking care of a family, but he doesn't pause anymore...she lit up! She even cheered for him when I said that he started walking 2 weeks after we adjusted his meds! :)
He's now hooked up to the EEG machine and it was horrible getting hooked up. HE doesn't like the air they have to blow on him to dry the paste. Plus being held down is no fun.
They were originally going to take him off his meds, but Chelsea said this morning that they are leary to do that where he has such good control now, that if they take him off, it could be months before they get it back. She then asked how long we were prepared to stay...ugh! I hate that question! So we shall see.
I'm so glad we came here. THey have a tech team watching his EEG as well as the epilepsy team and we will be updated every morning with what's going on.
Not much more at this point. I will update as I can. Just pray they find what is goin on! It will be so much easier to treat him then.
Chelsea came and met with us again and visited about his history and when I said that we have been abscence seizure free since the end of June...mind you they are easy to miss if you are running around taking care of a family, but he doesn't pause anymore...she lit up! She even cheered for him when I said that he started walking 2 weeks after we adjusted his meds! :)
He's now hooked up to the EEG machine and it was horrible getting hooked up. HE doesn't like the air they have to blow on him to dry the paste. Plus being held down is no fun.
They were originally going to take him off his meds, but Chelsea said this morning that they are leary to do that where he has such good control now, that if they take him off, it could be months before they get it back. She then asked how long we were prepared to stay...ugh! I hate that question! So we shall see.
I'm so glad we came here. THey have a tech team watching his EEG as well as the epilepsy team and we will be updated every morning with what's going on.
Not much more at this point. I will update as I can. Just pray they find what is goin on! It will be so much easier to treat him then.
Thursday, July 21, 2011
Get Ready...Set...HOLD ON!
Wow! I'm getting ready to put my jet pack on to prepare for this next week!
I'm working tomorrow then we start the craziness. We head to Omaha Saturday then we are off to Denver on Sunday for Chris' admission to the Children's Hospital in Denver.
I have talked with a couple of parents and they have also been impressed with the hospital and they do lots of things that we need to bring back to this area. The one that touched base this week was that the welcome coordinator called and set up our hotel for us for Sunday night. Then she gave us some helpful tips along the way.
Chris will be hooked up to an EEG monitor for 2-3 days. They will back off his meds to attempt to trigger a seizure...scary. He will also have his third round of genetic testing at this time.
The big boys are gonna stay with Grandma K. It's just a lot to process in the next few days. Please keep Chris in your prayers. We trully hope that they can find something while we are out there.
I'm working tomorrow then we start the craziness. We head to Omaha Saturday then we are off to Denver on Sunday for Chris' admission to the Children's Hospital in Denver.
I have talked with a couple of parents and they have also been impressed with the hospital and they do lots of things that we need to bring back to this area. The one that touched base this week was that the welcome coordinator called and set up our hotel for us for Sunday night. Then she gave us some helpful tips along the way.
Chris will be hooked up to an EEG monitor for 2-3 days. They will back off his meds to attempt to trigger a seizure...scary. He will also have his third round of genetic testing at this time.
The big boys are gonna stay with Grandma K. It's just a lot to process in the next few days. Please keep Chris in your prayers. We trully hope that they can find something while we are out there.
Saturday, July 16, 2011
Time Flies When You're Having Fun
Wow have the weeks flown! We are looking at school in a little over a month and 2 trips to Denver in between!
We had our follow ups in late June for Mr. Christopher. Dr. Thomas (Pulmonology) and Dr. Goebel (ENT) were very happy with him. They both accused him of being a different kid. I agreed. Dr. Goebel couldn't believe that his sleeping at night was so dramatically affected. You now have to walk clear in to the room to see if he is sleeping or not.
Our swallow study with our favorite Speech lady went well, but not as well as I had hoped. Later Jason and I had discussed that we both thought that he would pass and they would just yank his tube. We were both wrong.
He is back to his baseline - honey thick liquids - as he was in January, but since Jen knows him so well, she was afraid to pull the tube because he fatigues so quickly when he eats so we are slowly introducing fluids back to him in staggering.
We haven't gotten very far, as the first couple weeks he got a cold and it settled in to his chest, so Jen backed things down, but we are doing better. And if Miss Lily (his cousin) would leave his tube alone, we wouldn't have to put it back in! I'm kidding, but she did pull it out one time because she tackled him for a cookie...atta girl!! :)
His walking is getting better by the day. He's now trying to run some days and takes about 3 steps and he's down, but he tries. He's started to do therapy at home with the special ed instructor and if Matt would leave him be during it, things would go well.
He's still very non-verbal other than up so we do quite a bit of sign language - his favorite is eat!
We head to Denver in a week for his EMU (epilepsy monitoring unit) stay. He will be hooked up to an EEG for 3 days and they will reduce his meds and stress him to see if they can capture a seizure. I hope they find something or can tell us something. They will also be doing some more genetic testing.
So before I know it, we will be shopping for Matt's first day of Kindergarten! Yikes!!!
We had our follow ups in late June for Mr. Christopher. Dr. Thomas (Pulmonology) and Dr. Goebel (ENT) were very happy with him. They both accused him of being a different kid. I agreed. Dr. Goebel couldn't believe that his sleeping at night was so dramatically affected. You now have to walk clear in to the room to see if he is sleeping or not.
Our swallow study with our favorite Speech lady went well, but not as well as I had hoped. Later Jason and I had discussed that we both thought that he would pass and they would just yank his tube. We were both wrong.
He is back to his baseline - honey thick liquids - as he was in January, but since Jen knows him so well, she was afraid to pull the tube because he fatigues so quickly when he eats so we are slowly introducing fluids back to him in staggering.
We haven't gotten very far, as the first couple weeks he got a cold and it settled in to his chest, so Jen backed things down, but we are doing better. And if Miss Lily (his cousin) would leave his tube alone, we wouldn't have to put it back in! I'm kidding, but she did pull it out one time because she tackled him for a cookie...atta girl!! :)
His walking is getting better by the day. He's now trying to run some days and takes about 3 steps and he's down, but he tries. He's started to do therapy at home with the special ed instructor and if Matt would leave him be during it, things would go well.
He's still very non-verbal other than up so we do quite a bit of sign language - his favorite is eat!
We head to Denver in a week for his EMU (epilepsy monitoring unit) stay. He will be hooked up to an EEG for 3 days and they will reduce his meds and stress him to see if they can capture a seizure. I hope they find something or can tell us something. They will also be doing some more genetic testing.
So before I know it, we will be shopping for Matt's first day of Kindergarten! Yikes!!!
Parable of Motherhood
When you walk in to Bergan Mercy Hospital in Omaha, there is this beautiful piano that automatically plays music and then there is this little passage that is with it. It reminds me of my Grandmother's and mother and even my journey....I wanted to share it with you.
Parable of Motherhood
ByTemple Bailey
The young mother set her foot on the path of life. "Is the way long?" she asked. And her guide said, "Yes, and the way is hard. And you will be old before you reach the end of it. But the end will be better than the beginning." But the young mother was happy and she would not believe that anything could be better than those years. So she played with her children and gathered flowers for them along the way and bathed them in the clear streams; and the sun shone on them and life was good, and the young mother cried, "Nothing will never be lovelier than this."
Then night came, and storm, and the path was dark and the children shook with fear and cold, and the mother drew them close and covered them with her mantle and the children said, "Oh Mother, we are not afraid, for you are near, and no harm can come," and the mother said, "This is better than the brightness of day, for I have taught my children courage."
And the morning came, and there was a hill ahead and the children climbed and grew weary, and the mother was weary, but at all times she said to the children, "A little patience and we are there." So the children climbed and when they reached the top, they said, "We could not have done it without you, Mother." And the mother, when she lay down that night, looked up at the stars and said, "This is a better day than the last, for my children have learned fortitude in the face of hardness. Yesterday I gave them courage, today I have given then strength."
And with the next day came strange clouds which darkened the earth, clouds of war and hate and evil--and the children groped and stumbled, and the mother said, "Look up. Lift your eyes to the light." And the children looked and saw above the clouds an Everlasting Glory, and it guided them and brought them beyond the darkness. And that night the mother said, "This is the best day of all for I have shown my children God."
And the days went on, and the weeks and the months and the years, and the mother grew old, and she was little and bent. And her children were tall and strong and walked with courage. And when the way was rough they lifted her, for she was as light as a feather; and at last they came to a hill, and beyond the hill they could see a shining road and golden gates flung wide. And the mother said, "I have reached the end of my journey. And now I know that the end is better than the beginning, for my children can walk alone and their children after them." And the children said, "You will always walk with us, Mother, even when you have gone through the gates."
And they stood and watched her as she went on alone, and the gates closed after her. And they said, "We cannot see her, but she is with us still. A mother like ours is more than a memory. She is a Living Presence."
Parable of Motherhood
ByTemple Bailey
The young mother set her foot on the path of life. "Is the way long?" she asked. And her guide said, "Yes, and the way is hard. And you will be old before you reach the end of it. But the end will be better than the beginning." But the young mother was happy and she would not believe that anything could be better than those years. So she played with her children and gathered flowers for them along the way and bathed them in the clear streams; and the sun shone on them and life was good, and the young mother cried, "Nothing will never be lovelier than this."
Then night came, and storm, and the path was dark and the children shook with fear and cold, and the mother drew them close and covered them with her mantle and the children said, "Oh Mother, we are not afraid, for you are near, and no harm can come," and the mother said, "This is better than the brightness of day, for I have taught my children courage."
And the morning came, and there was a hill ahead and the children climbed and grew weary, and the mother was weary, but at all times she said to the children, "A little patience and we are there." So the children climbed and when they reached the top, they said, "We could not have done it without you, Mother." And the mother, when she lay down that night, looked up at the stars and said, "This is a better day than the last, for my children have learned fortitude in the face of hardness. Yesterday I gave them courage, today I have given then strength."
And with the next day came strange clouds which darkened the earth, clouds of war and hate and evil--and the children groped and stumbled, and the mother said, "Look up. Lift your eyes to the light." And the children looked and saw above the clouds an Everlasting Glory, and it guided them and brought them beyond the darkness. And that night the mother said, "This is the best day of all for I have shown my children God."
And the days went on, and the weeks and the months and the years, and the mother grew old, and she was little and bent. And her children were tall and strong and walked with courage. And when the way was rough they lifted her, for she was as light as a feather; and at last they came to a hill, and beyond the hill they could see a shining road and golden gates flung wide. And the mother said, "I have reached the end of my journey. And now I know that the end is better than the beginning, for my children can walk alone and their children after them." And the children said, "You will always walk with us, Mother, even when you have gone through the gates."
And they stood and watched her as she went on alone, and the gates closed after her. And they said, "We cannot see her, but she is with us still. A mother like ours is more than a memory. She is a Living Presence."
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