He wants to chew everything...still waiting on teeth tho!
Saturday, January 17, 2009
Friday, January 16, 2009
Cousin of Chucky...and going back to work
Only 9 more days till my baby turns one!! I am so excited! I can't believe how far we have come and how quickly this year has passed. He has changed SO much.
We started that Oigong therapy yesterday afternoon with his Occupational Therapist. He hated it lol. I think it was a combination of sleepiness, being put on his tummy for a part of it and just plain hating it. But we will give it a go and see what happens. As other mothers of CP children have told me...there is so many different therapies out there, try each one, if you dont feel its working move on. So thats the game plan!
I was taught the moves and it is up to me to do the massage every night with him. Not a big deal to do. She brought a doll with numbers and lines written on it showing how to do it that freaked Huber out a little lol. The cousin of Chucky we decided it reminded us of...so its hanging out in the closet till I need the direction!
Work has become scarce around here for Huber so this next week I will be filling in 5 days at the restaurants. No more the 6hrs at once but it will be hard to get back into the hang of things. Huber assures me he will handle Hubercito just fine which I know he will but its always hard for me leaving my baby for too long! We are in desperate need of the money though so I have no choice! I am amazed at how well we have done without my working full time this last year. Thanks to help from the community the first couple months and then help from different state programs we have somehow managed to pay our bills and still have food on the table. This month however is hitting us pretty hard but it all eventually works out.
We started that Oigong therapy yesterday afternoon with his Occupational Therapist. He hated it lol. I think it was a combination of sleepiness, being put on his tummy for a part of it and just plain hating it. But we will give it a go and see what happens. As other mothers of CP children have told me...there is so many different therapies out there, try each one, if you dont feel its working move on. So thats the game plan!
I was taught the moves and it is up to me to do the massage every night with him. Not a big deal to do. She brought a doll with numbers and lines written on it showing how to do it that freaked Huber out a little lol. The cousin of Chucky we decided it reminded us of...so its hanging out in the closet till I need the direction!
Work has become scarce around here for Huber so this next week I will be filling in 5 days at the restaurants. No more the 6hrs at once but it will be hard to get back into the hang of things. Huber assures me he will handle Hubercito just fine which I know he will but its always hard for me leaving my baby for too long! We are in desperate need of the money though so I have no choice! I am amazed at how well we have done without my working full time this last year. Thanks to help from the community the first couple months and then help from different state programs we have somehow managed to pay our bills and still have food on the table. This month however is hitting us pretty hard but it all eventually works out.
Thursday, January 8, 2009
A Year Later...Eating Orally!!
Over the weekend as I was at work, my mom called and said that Hubercito was sneezing a lot and when he would sneeze he would choke a little. And he threw up once. He had a runny nose and was very congested. I called his pediatrition but being Saturday they of course were not there. I was referred to a nearby clinic and the nurse suggested that I take him into the ER. They are in Coos Bay and by the time we would have driven the 2 hours to get there they would have been closed.
At the ER in Crescent City they did a chest x-ray to make sure that he hadn't aspirated. Luckily he hadn't. Because he had a lot of mucus and was congested they also did a RSV virus check. Which is a respiratory virus. It came back a little positive so we were told to keep him extra hydrated and in a room with a humidifier and that it should clear up in about a week on its own.
Monday afternoon we drove to my Aunts house in Drain. We had a sceduled Barium Swallow Study scheduled the next day in Eugene at the new Sacred Heart Hospital.
Hubercito was of course grumpy and very tired when we arrived for his swallow study. We had about a half hour wait so we got him asleep. Only problem with this was when they did call us back he didnt want to wake up! Normally any little movement or noise will awake him but of course when we need him awake he was out!
They sat him up in a lil chair and offered him yogurt and applesauce mixed with Barium as the X-ray machine was on his mouth so as he sat there we were able to watch what was happening inside his mouth. He was very groggy and unsure what was going on so he of course started whining and crying. I tried to get him to suck on a bottle but without much results. After awhile I went back to watch the screen and let Huber try to get him to eat, as he does these things more for Daddy then Mommy. By this time he was pissed off so Huber had to take him out of the chair and calm him down. Offering him bites and drinks as he was being held. He was more interested safe in the arms of Papi. I explained to the Drs that he does not normally sit by himself without crying and that when we did offer him tastes we were normally holding him. So not only with being in a new enviorment, with new people, new tastes and having to sit by himself he was not having it!
Miraculously right as the tech came back behind the protective glass and removed his vest saying he didnt think Hubercito was gonna show us anything we glanced over at the screen and saw him sucking away on the bottle swallowing gulp after gulp! After about 5 minutes and after they took the bottle away from him and tried the yogurt again he was pissed again and done but we had enough to determine if it was safe to feed him or not!
After reviewing the tape she said that she did not see anything wrong with his eating and didnt see any reason why we couldn't go ahead with bottle feeding and baby food feedings!! I was SO excited! She did say we needed to thicken up his formula a lil but other then that he was good to go.
He is definatly interested but having a lil trouble grasping the nipple as it is different from his pacifiers which is all he has had to suck on. He does get it every once in a while and sucks away like a lil pro! I even gave him tastes of Banana baby food and he liked that chomping away when he gets a spoonful.
Right now he eats continuously on his feeding pump for about 10 hrs thru the night and about 4-6 hrs throughout the day on the pump and is gaining weight steadily. It will be such a relief to be able to eventually feed him with the bottle throughout the day and on the pump at night. No more dragging all the equiptment around with us and having to find somewhere to feed him where we can sit for a couple hours when we are out of town. It will take time for this but I know we will get there! Our goal for him this year feeding wise is to be able to eat enough orally still gaining weight and therefore get his g-tube taken out. That would be a huge accomplishment for him!
At the ER in Crescent City they did a chest x-ray to make sure that he hadn't aspirated. Luckily he hadn't. Because he had a lot of mucus and was congested they also did a RSV virus check. Which is a respiratory virus. It came back a little positive so we were told to keep him extra hydrated and in a room with a humidifier and that it should clear up in about a week on its own.
Monday afternoon we drove to my Aunts house in Drain. We had a sceduled Barium Swallow Study scheduled the next day in Eugene at the new Sacred Heart Hospital.
Hubercito was of course grumpy and very tired when we arrived for his swallow study. We had about a half hour wait so we got him asleep. Only problem with this was when they did call us back he didnt want to wake up! Normally any little movement or noise will awake him but of course when we need him awake he was out!
They sat him up in a lil chair and offered him yogurt and applesauce mixed with Barium as the X-ray machine was on his mouth so as he sat there we were able to watch what was happening inside his mouth. He was very groggy and unsure what was going on so he of course started whining and crying. I tried to get him to suck on a bottle but without much results. After awhile I went back to watch the screen and let Huber try to get him to eat, as he does these things more for Daddy then Mommy. By this time he was pissed off so Huber had to take him out of the chair and calm him down. Offering him bites and drinks as he was being held. He was more interested safe in the arms of Papi. I explained to the Drs that he does not normally sit by himself without crying and that when we did offer him tastes we were normally holding him. So not only with being in a new enviorment, with new people, new tastes and having to sit by himself he was not having it!
Miraculously right as the tech came back behind the protective glass and removed his vest saying he didnt think Hubercito was gonna show us anything we glanced over at the screen and saw him sucking away on the bottle swallowing gulp after gulp! After about 5 minutes and after they took the bottle away from him and tried the yogurt again he was pissed again and done but we had enough to determine if it was safe to feed him or not!
After reviewing the tape she said that she did not see anything wrong with his eating and didnt see any reason why we couldn't go ahead with bottle feeding and baby food feedings!! I was SO excited! She did say we needed to thicken up his formula a lil but other then that he was good to go.
He is definatly interested but having a lil trouble grasping the nipple as it is different from his pacifiers which is all he has had to suck on. He does get it every once in a while and sucks away like a lil pro! I even gave him tastes of Banana baby food and he liked that chomping away when he gets a spoonful.
Right now he eats continuously on his feeding pump for about 10 hrs thru the night and about 4-6 hrs throughout the day on the pump and is gaining weight steadily. It will be such a relief to be able to eventually feed him with the bottle throughout the day and on the pump at night. No more dragging all the equiptment around with us and having to find somewhere to feed him where we can sit for a couple hours when we are out of town. It will take time for this but I know we will get there! Our goal for him this year feeding wise is to be able to eat enough orally still gaining weight and therefore get his g-tube taken out. That would be a huge accomplishment for him!
Friday, January 2, 2009
As A New Year Begins
As this last year has come to an end I can't believe how fast it went! 2008 was both the most challenging year of my life but also the most rewarding. I am so thankful for the people I have in my life and am excited for the new experiences we will have as a new family in 2009.
I have many New Years resolutions this year. I never keep them but I am going to do my best this time. To relax and enjoy the lil moments more, to stand up for myself and those I love more, to not care what others say or think of me, to do everything I can to teach my son the things he needs to know, to make sure that we are going in a direction in life instead of standing still as we feel we are, to spend more time and keep in better touch with friends and family, and to get myself back in shape to where I feel good about how I look and feel.
Going into 2008 all we knew was that sometime that first month we were going to be parents. We knew it would change us and make us stronger as a couple and more mature but we never would have thought our lives would change as much as they did. Watching our son be born, seeing him not breathing, watching him hooked up to machines and wires hooked all over him, day in and day out for 3 weeks in the NICU with him we not only had to learn how to be good parents but in a way learn how to be his full time nurse. We witnessed a miracle in our son. From them telling us he might not survive that first night to that he was brain damaged and would never do anything, to watching him day by day do new things, to where he is today and how much personality and strength he has. I learned more from my son in this one year then I could have ever imagined.
It's not fair this happened to him or to us. But its something we had to accept and deal with. We have to believe that there is reasoning behind it. We dont talk about the things he can't do or the challenges he will have ahead of him. We focus on how far he's come. The first 6 months I dont know how I survived lol. The constant crying, needing to be held constantly, the new medical equiptment and learning how to use it all, the constant fear that something was wrong. You dont know stress till you have this tiny lil thing depending on you for everything! To today to where we can leave the house without him screaming the whole time, his having hour long moments of laying by himself not needing to constantly be held, watching him smile and respond to us, watching him focus and study new things, hearing him babbling away, less crying, less arching and fisted hands, letting us stretch his muscles more etc etc.
We are forever in debted to those around us who prayed with us and helped us out throughout this year. We made mistakes and tried our hardest. We know we have more people who care about us then we ever thought.
2008 all in all was a great year but 2009 will definatly be better! Happy New Year to everyone.
I have many New Years resolutions this year. I never keep them but I am going to do my best this time. To relax and enjoy the lil moments more, to stand up for myself and those I love more, to not care what others say or think of me, to do everything I can to teach my son the things he needs to know, to make sure that we are going in a direction in life instead of standing still as we feel we are, to spend more time and keep in better touch with friends and family, and to get myself back in shape to where I feel good about how I look and feel.
Going into 2008 all we knew was that sometime that first month we were going to be parents. We knew it would change us and make us stronger as a couple and more mature but we never would have thought our lives would change as much as they did. Watching our son be born, seeing him not breathing, watching him hooked up to machines and wires hooked all over him, day in and day out for 3 weeks in the NICU with him we not only had to learn how to be good parents but in a way learn how to be his full time nurse. We witnessed a miracle in our son. From them telling us he might not survive that first night to that he was brain damaged and would never do anything, to watching him day by day do new things, to where he is today and how much personality and strength he has. I learned more from my son in this one year then I could have ever imagined.
It's not fair this happened to him or to us. But its something we had to accept and deal with. We have to believe that there is reasoning behind it. We dont talk about the things he can't do or the challenges he will have ahead of him. We focus on how far he's come. The first 6 months I dont know how I survived lol. The constant crying, needing to be held constantly, the new medical equiptment and learning how to use it all, the constant fear that something was wrong. You dont know stress till you have this tiny lil thing depending on you for everything! To today to where we can leave the house without him screaming the whole time, his having hour long moments of laying by himself not needing to constantly be held, watching him smile and respond to us, watching him focus and study new things, hearing him babbling away, less crying, less arching and fisted hands, letting us stretch his muscles more etc etc.
We are forever in debted to those around us who prayed with us and helped us out throughout this year. We made mistakes and tried our hardest. We know we have more people who care about us then we ever thought.
2008 all in all was a great year but 2009 will definatly be better! Happy New Year to everyone.
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