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Monday, August 31, 2009
Sunday, August 30, 2009
Feeling Better........:)
The past day or so has actually been kinda quiet around here. Gage is finally starting to feel better, and is getting back into his routine! He did have a pretty bad seizure Sat. evening. This time he would scream out in between the eye rolling, and the crunches. It pains me everytime he has this type, because the scream is his "it hurts" scream, and I cant take the pain away from him. I say a little prayer everytime he goes into a seizure, praying that God takes this from him! I wish it was me that this was happening to, not my baby boy! I do feel helpless, most of the time, sitting there watching him, and being able to do nothing but comfort him. I rub him (so he knows I am there), and tell him everything is going to be alright! BE ALRIGHT???? When is this going to happen? When is all this going to stop for him? I know its in the Lords hands, and in his own time my questions will be answered! I just have to find enough strength, and faith to get me there!
Pam, Gage, and I got up and went to church this morning! I know it is just a small step, but.... it is a step! There has been alot of built up anger inside of me. The Devil has been making me question my God, and my faith! I know I have to push past him, and do what I feel is right in my heart, for me! Im not a selfish person, and I always put needs of others before my own....... but this is something I am doing for ME!! I thought I had come to terms with things, but inside I havent fully! I feel alone, depressed, mad, a overall emotional wreck, and there is nobody that can do, or say anything to make me feel better! I have to do this for myself!
Pam, Gage, and I got up and went to church this morning! I know it is just a small step, but.... it is a step! There has been alot of built up anger inside of me. The Devil has been making me question my God, and my faith! I know I have to push past him, and do what I feel is right in my heart, for me! Im not a selfish person, and I always put needs of others before my own....... but this is something I am doing for ME!! I thought I had come to terms with things, but inside I havent fully! I feel alone, depressed, mad, a overall emotional wreck, and there is nobody that can do, or say anything to make me feel better! I have to do this for myself!
Friday, August 28, 2009
Seizures in his sleep......
Well, this morning started like most. Gage decided to wake up at 5:30 this morn. (I think daddys alarm is waking him) and I go get him and put him in the bed with me! This is my favorite part of the day, and I think it is his too. He LOVES TO SNUGGLE!!!! Just a few minutes after he falls back to sleep I feel his body start going into what I call mini crunches, and sure enough he is having a seizure while he is sleeping! This scares me to death knowing this, because how many is he having throughout the night that I dont know about? I am a very light sleeper (since having Gage), and the smallest little anything, and I am up and in his room checking on him, but with this he made no noises at all. Aunt Kim came and took his blood pressure early this morning (she has to take it a couple times a week and send results to his Nephrologist because of his high blood pressure and thickening heart) and he seemed zoned out for a couple of minutes, and then he started babbling. So now, is he having absence seizures also? We go at the end of Sept. to see his Neurologist, and his new Geneticist, I will have LOTS of questions to ask!
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After his surgery.
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The day he came home from his head surgery. He was so happy to be leaving:)
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Just some random pics
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A Special Poem.....
I have shared this with many of my family and friends before, but wanted to share with anyone who came across my blog. I found this poem on http://www.livingwithtrisomy13.org/ (they also have some other inspirational reading) when we first learned of Gages condition, and now I reference it ALOT. I almost have it memorized, and when the day seems to be getting tough, I just repeat the lines over and over.
Heaven's Very Special Child
A meeting was held quite far from Earth.
It's time again for another birth.
Said the Angels to the Lord above,
This special child will need much love.
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
He may not run, or laugh, or play,
His thoughts may seem quite far away.
In many ways he won't adapt
And he'll be known as handicapped.
So let's be careful where he's sent
We want his life to be content.
Please, Lord, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is Heaven's very special child.
By: Edna Massionilla
December, 1981
Heaven's Very Special Child
A meeting was held quite far from Earth.
It's time again for another birth.
Said the Angels to the Lord above,
This special child will need much love.
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
He may not run, or laugh, or play,
His thoughts may seem quite far away.
In many ways he won't adapt
And he'll be known as handicapped.
So let's be careful where he's sent
We want his life to be content.
Please, Lord, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is Heaven's very special child.
By: Edna Massionilla
December, 1981
Thursday, August 27, 2009
The past couple of days.....
Thursday of last week Gage had some immunizations at his 15 month check up. He almost immediately started running a fever, and with fever comes increased seizures. Friday he woke up and the fever had broke and all semed to be going good. Saturday-Sunday I could tell he just wasnt feeling all that great, and was running a small grade fever. Monday I called the Dr. to let them know that now he was also coughing pretty bad. We went to see the Dr. and they wanted to do x-rays to rule out pneumonia because (of his history of pneumonia and his aspiration). Thank God, it was not pneumonia, it is just viral and will have to play its course. My poor baby was one sick little boy. Both of his eyes were matted shut, and constantly running, he has a runny nose, a horrible cough, and still fever. He did wake up today feeling a little better. He has been cooing some and rolling on the floor, so hopefully the worst is over. We were also informed that Wednesday Sept 2 he will have his second opinion about his feeding tube in Duke with Dr. Rice. That is also his Aunt Kims birthday, so she will be spending her birthday with us at the Dr. all day. Sorry Aunt Kim :(
The Beginning....
4-26-09
My name is Beth Elliott, and we live in Roper, NC. On May 20,2008 at 32 weeks gestation God graced my family and I with a beautiful baby boy named Milton "Gage" Elliott. Right away the doctors were concerned by different morpic features that Gage presented, but the ones that were of importance right away was his congenital heart defects and his difficulty eating. He was diagnosed right away with micrognathia (small jaw), and stayed in NICU 8 days until he was sent home feeding with a haberman nipple.
While Gage was in NICU they ran a chromosome test, and the results showed that he was Mosaic, and had a unbalanced translocation 2;13. We were informed that he was the only known case ever reported with this specific chromosome disorder and that his prognosis was unknown. We were paired with a Genetic specialist to follow him unaware that she was just the first specialists of many to come.
Gage was being followed by a feed team where they determined that he aspirated his milk, and every bottle would have to thickened by Thick It. With this he developed reflux and was sent to a pulmologist. He was followed by a Cardiologist for his ASD, and PDA, and later to find he also had a VSD, none of them will require surgery as of now. He requires OT and PT because of contractions of his hands and development delays. He sees a Urologist for his undescended testicles. At 6 months old he had Craniostynosis repair, and days later started having seizures which lead us to being seen by a Neurologist. He also developed Hypertension after the surgery and is now being followed by a Nephrologist. Gage has been on several medications to try to control his seizures, and on April 18 was air lifted to Duke due to uncontrollable seizures.
While in the hospital my sister-in-law, which has been God send to us and also a pediatric nurse of 20 years, received a call from our Geneticist and told her that a skin biopsy that was done on Sept 17 2008 had just come back and results show that Gage has Mosaic Partial Trisomy 13. Immediately we all break down because we have done research on this condition before and 80% of the time the prognosis is not good.
It wasn't until we were released from the hospital and I was able to continue my search that I stumbled across www.livingwithtrisomy13.org. It has given me and my family lots of hope to see and hear the stories of kids that are living with this rare disorder.
I am still trying to learn as much as I can about this syndrome, and I vow to inform as many people as I can about this. I would appreciate if someone could lead me to some resources that are out there that I am unaware of. I have ordered 2 books from the web site already. I appreciate any and all information that anyone can give.
6-16-09
Hello to all! Well, Gage is 1yr old now, and everyday that goes by he continues to have stride in his progress. We celebrated his birthday with lots of close friends and family, and although it was a nasty rainy day, it was such a joyous occasion!
Since I last wrote in, there as been a lot of changes with Gage. I believe the doctors have finally seemed to get his seizures under control. There has been a few slip ups with his eyes rolling back in his head, and occasionally a stiffness of his arm, but NOTHING like he had been going through. We have a lot of people praying for our little man, and all I can say is there is a lot of power in prayer!!! There is not a day that goes by that I don't thank the Lord for blessing us with another good day!
He has FINALLY started cutting teeth, and now has 3. Both bottom and one top one. He has had the hardest time with them. He has been really cranky, and runnig low grade fevers, but I think the worst is over with that.
Gage is showing us his true acrobat skills. He loves to be on the floor rolling all over the place. Front to back, back to front. He is also starting to get up on his knees and scoot! I don't think it will be much longer before he starts crawling. He still doesnt have full head control but is making some good progress with that. We have PT and OT that comes out to the house now that gives him a real good work out! We are also excited that Speech Therapy is going to be starting real soon. I swear he says mama from time to time, and he coos to me all day long.
The doctors are still concerned about his eye sight. We have been waiting for his neurologist to clear him so he can have an ERG done, and we finally got the ok to go ahead with that test. We are looking for it to be done some time in August.
Well, I think that about sums things up for now. I will keep you posted as things continue to change.
My name is Beth Elliott, and we live in Roper, NC. On May 20,2008 at 32 weeks gestation God graced my family and I with a beautiful baby boy named Milton "Gage" Elliott. Right away the doctors were concerned by different morpic features that Gage presented, but the ones that were of importance right away was his congenital heart defects and his difficulty eating. He was diagnosed right away with micrognathia (small jaw), and stayed in NICU 8 days until he was sent home feeding with a haberman nipple.
While Gage was in NICU they ran a chromosome test, and the results showed that he was Mosaic, and had a unbalanced translocation 2;13. We were informed that he was the only known case ever reported with this specific chromosome disorder and that his prognosis was unknown. We were paired with a Genetic specialist to follow him unaware that she was just the first specialists of many to come.
Gage was being followed by a feed team where they determined that he aspirated his milk, and every bottle would have to thickened by Thick It. With this he developed reflux and was sent to a pulmologist. He was followed by a Cardiologist for his ASD, and PDA, and later to find he also had a VSD, none of them will require surgery as of now. He requires OT and PT because of contractions of his hands and development delays. He sees a Urologist for his undescended testicles. At 6 months old he had Craniostynosis repair, and days later started having seizures which lead us to being seen by a Neurologist. He also developed Hypertension after the surgery and is now being followed by a Nephrologist. Gage has been on several medications to try to control his seizures, and on April 18 was air lifted to Duke due to uncontrollable seizures.
While in the hospital my sister-in-law, which has been God send to us and also a pediatric nurse of 20 years, received a call from our Geneticist and told her that a skin biopsy that was done on Sept 17 2008 had just come back and results show that Gage has Mosaic Partial Trisomy 13. Immediately we all break down because we have done research on this condition before and 80% of the time the prognosis is not good.
It wasn't until we were released from the hospital and I was able to continue my search that I stumbled across www.livingwithtrisomy13.org. It has given me and my family lots of hope to see and hear the stories of kids that are living with this rare disorder.
I am still trying to learn as much as I can about this syndrome, and I vow to inform as many people as I can about this. I would appreciate if someone could lead me to some resources that are out there that I am unaware of. I have ordered 2 books from the web site already. I appreciate any and all information that anyone can give.
6-16-09
Hello to all! Well, Gage is 1yr old now, and everyday that goes by he continues to have stride in his progress. We celebrated his birthday with lots of close friends and family, and although it was a nasty rainy day, it was such a joyous occasion!
Since I last wrote in, there as been a lot of changes with Gage. I believe the doctors have finally seemed to get his seizures under control. There has been a few slip ups with his eyes rolling back in his head, and occasionally a stiffness of his arm, but NOTHING like he had been going through. We have a lot of people praying for our little man, and all I can say is there is a lot of power in prayer!!! There is not a day that goes by that I don't thank the Lord for blessing us with another good day!
He has FINALLY started cutting teeth, and now has 3. Both bottom and one top one. He has had the hardest time with them. He has been really cranky, and runnig low grade fevers, but I think the worst is over with that.
Gage is showing us his true acrobat skills. He loves to be on the floor rolling all over the place. Front to back, back to front. He is also starting to get up on his knees and scoot! I don't think it will be much longer before he starts crawling. He still doesnt have full head control but is making some good progress with that. We have PT and OT that comes out to the house now that gives him a real good work out! We are also excited that Speech Therapy is going to be starting real soon. I swear he says mama from time to time, and he coos to me all day long.
The doctors are still concerned about his eye sight. We have been waiting for his neurologist to clear him so he can have an ERG done, and we finally got the ok to go ahead with that test. We are looking for it to be done some time in August.
Well, I think that about sums things up for now. I will keep you posted as things continue to change.
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