My baby boy is sitting by himself for up to 5 minutes!! I am SO proud of him. Updates to follow...I will write a blog on what he is up to when I have more computer time :)
Wednesday, October 7, 2009
Wednesday, July 22, 2009
Growing, Changing, Learning
We have had a busy last couple of days but have got a lot accomplished and got a lot of great news!
Hubercito and I enrolled in Early Head Start yesterday. If I understand correctly it is more to teach me how to take care of a disabled child (like I didn't already figure that one out!) and just about development and that sort of thing. They come to our house to work with us and they offer play groups for us to attend to meet other familes and just to hangout together and play! So he goes on a waiting list now and should be accepted next month some time.
He also had physical therapy yesterday with his teacher Anne. We got to show her all the changes and new things that he has been doing. He is nonstop moving. Not content to be held or sit still anymore. He definatly knows that he can move around by himself, he just has to keep figuring out how. Also he has been loving being on his tummy and she was really impressed at how long he tolerated it and how well he held his head looking all around. She even said a few of the positions he was putting himself into or that I was putting him into just as I was holding him and talking to her were great and for him to tolerate them was a great foreshadowing into what he will be able to do in the future as far as moving around. One of the major things she was proud of that he is doing is that if he is laying on my lap and I turn him playing as if he is gonna fall off he reacts and pulls himself back. She said that a lot of CP babys brains dont register that they are gonna fall. It seems like something so simple but she said that it is a HUGE thing for him. Our goals for the next month before the therapy school year starts up again is work on side sitting with his legs to the side and arms in front of him holding himself up and also to keep practicing and stretching on the excersise ball.
Then this morning he had an appointment with his new pediatrition Dr Goyle. She is young and very nice and we hit it off right away so I am very happy about that and feel confident that she will be a good Dr for him. She gave me tons of info on some of the things that he is doing such as his raspy breathing. She reassured me that it isnt asthma and something pretty commen in CP babies and even younger newer babies. There are a few different things that could be making him breathe like that that can be fixed or he will outgrow it. He really only does it when he is excited or when he is concentrating and trying to do something. Which lately is ALL day long!She also set him up with a bunch of referrels such as a neurologist, dentist, Ear, nose and mouth specialist, nutritionist etc etc. Plus we got labs drawn to check his seizure medication level and a couple other things. And in later visits she is gonna help me with my dreaded sleep problems with him. All is all she was very thourough and I am excited to get all this going for him! She said once we consult with all these different specialists everything will just all take off and come together for him. We go back in 2 weeks for results of the tests and to get some shots if they find that he didnt already have them done.
I dont know if it is the moving to a different climate, starting more aggressive therapies or just him getting older but he is changing so much and for the better. His G tube site was always a battle for us keeping it dry and the granulation tissue down but it is now completely cleared up and Dr Goyle said it looks amazingly well for a G Tube site!
My baby is growing up and it wont be long before he starts doing all the things they said he wouldn't do but that we always knew he would be doing :)
Hubercito and I enrolled in Early Head Start yesterday. If I understand correctly it is more to teach me how to take care of a disabled child (like I didn't already figure that one out!) and just about development and that sort of thing. They come to our house to work with us and they offer play groups for us to attend to meet other familes and just to hangout together and play! So he goes on a waiting list now and should be accepted next month some time.
He also had physical therapy yesterday with his teacher Anne. We got to show her all the changes and new things that he has been doing. He is nonstop moving. Not content to be held or sit still anymore. He definatly knows that he can move around by himself, he just has to keep figuring out how. Also he has been loving being on his tummy and she was really impressed at how long he tolerated it and how well he held his head looking all around. She even said a few of the positions he was putting himself into or that I was putting him into just as I was holding him and talking to her were great and for him to tolerate them was a great foreshadowing into what he will be able to do in the future as far as moving around. One of the major things she was proud of that he is doing is that if he is laying on my lap and I turn him playing as if he is gonna fall off he reacts and pulls himself back. She said that a lot of CP babys brains dont register that they are gonna fall. It seems like something so simple but she said that it is a HUGE thing for him. Our goals for the next month before the therapy school year starts up again is work on side sitting with his legs to the side and arms in front of him holding himself up and also to keep practicing and stretching on the excersise ball.
Then this morning he had an appointment with his new pediatrition Dr Goyle. She is young and very nice and we hit it off right away so I am very happy about that and feel confident that she will be a good Dr for him. She gave me tons of info on some of the things that he is doing such as his raspy breathing. She reassured me that it isnt asthma and something pretty commen in CP babies and even younger newer babies. There are a few different things that could be making him breathe like that that can be fixed or he will outgrow it. He really only does it when he is excited or when he is concentrating and trying to do something. Which lately is ALL day long!She also set him up with a bunch of referrels such as a neurologist, dentist, Ear, nose and mouth specialist, nutritionist etc etc. Plus we got labs drawn to check his seizure medication level and a couple other things. And in later visits she is gonna help me with my dreaded sleep problems with him. All is all she was very thourough and I am excited to get all this going for him! She said once we consult with all these different specialists everything will just all take off and come together for him. We go back in 2 weeks for results of the tests and to get some shots if they find that he didnt already have them done.
I dont know if it is the moving to a different climate, starting more aggressive therapies or just him getting older but he is changing so much and for the better. His G tube site was always a battle for us keeping it dry and the granulation tissue down but it is now completely cleared up and Dr Goyle said it looks amazingly well for a G Tube site!
My baby is growing up and it wont be long before he starts doing all the things they said he wouldn't do but that we always knew he would be doing :)
Friday, July 17, 2009
So Far So Good
We are halfway through July already and so far have had a great month! We are finally all settled in our new place here in Cali and lovin it! We got all of our stuff from Oregon moved down so it finally feels like home here!
Huber got a few weeks off unexpectadly so we took a fast mini vacation back up to Oregon to spend the 4th of July with my Mom and got to see some family and friends while we were there. I just wasnt ready to give up our tradition of the 4th spent on the beach. It of course was freezing cold, being Brookings so we had to bail out early but still fun. It was nice to get out of the heat and into the cold for a couple days!
Hubercito continues to do well. We had our first Dr visit last week. He is just under 20lbs and got a clean bill of health after his physical. We didnt get to see the actual Dr we will be going to see from now on but we are going back this Wed to meet with her. She deals with a lot of Cerebral Palsy babies and has a lot of advice for me on transitioning him from babyhood to toddlerhood. Such as his diet and getting him in to see all the specialists he needs to see.
Our Occupational therapist was nice enough to take a few days out of her summer vacation to work with Huber so we continue working with the walker and learned that we can get some good stretches and excersises out of him on one of those big excersise balls without a lot of protest from him. He is moving around non stop all day, not content to be held like before. And jabbering away non stop! He is definatly more aware of his surroundings and knows what he wants and tries his hardest to get or do it. I worked with him last night on rolling from his back to his stomach and then moving his arms out in front of him and pushing himself up and after showing him only one time he just about had it, only needing a lil help from mommy. But when doing things like that with him you can see the understanding and determination he has. It is very exciting to see!
Tuesday, June 30, 2009
Kickin Butt
Hubercito continues to do an awesome job in Occupational Therapy. There is a lot of different things we are working on and just not enough time to really be able to work on everything at once. We only have 1 more week before all the teachers go on their summer vacations so they are trying to get Hubercito everything he will need for the summer before that starts.
Christine our teacher is very optimistic and was amazed at how responsive Hubercito is. When we asked him to touch a toy you could see him raise his hand a lil as if trying to. When she would tell him okay we are going to do this now, he would stiffen up as if knowing she was about to move him to a new position. She called his name today sitting behind him and he stopped what he was doing and tried to find her. These are all things that Huber and I have seen all along but as always it is always nice to see a professional who works with many kids with special needs get so excited about him doing so well and being so responsive to what we talk to him about. She said that he is a very intelligent lil guy.
We met a physical therapist today named Anne who is going to be bringing us a stroller to use that will position Hubercito better then the one we have and is also going to let us play around with a walker since he is accepting and liking standing up right now. With the walker it will give him the support he needs allowing us to teach him to use his feet and legs to get around. He is definatly more wiggly and always trying to get down when being held. I am very excited to see how he does with these.
We will also be meeting with a behaviorist who will be able to talk to me and help me with some ideas on how to get him to sleep easier and faster which is probably the biggest challenge I have with him right now.
I am loving the therapies here in California! He has already received so much more attention and the fact that getting equiptment is so easy is awesome!
Christine our teacher is very optimistic and was amazed at how responsive Hubercito is. When we asked him to touch a toy you could see him raise his hand a lil as if trying to. When she would tell him okay we are going to do this now, he would stiffen up as if knowing she was about to move him to a new position. She called his name today sitting behind him and he stopped what he was doing and tried to find her. These are all things that Huber and I have seen all along but as always it is always nice to see a professional who works with many kids with special needs get so excited about him doing so well and being so responsive to what we talk to him about. She said that he is a very intelligent lil guy.
We met a physical therapist today named Anne who is going to be bringing us a stroller to use that will position Hubercito better then the one we have and is also going to let us play around with a walker since he is accepting and liking standing up right now. With the walker it will give him the support he needs allowing us to teach him to use his feet and legs to get around. He is definatly more wiggly and always trying to get down when being held. I am very excited to see how he does with these.
We will also be meeting with a behaviorist who will be able to talk to me and help me with some ideas on how to get him to sleep easier and faster which is probably the biggest challenge I have with him right now.
I am loving the therapies here in California! He has already received so much more attention and the fact that getting equiptment is so easy is awesome!
Tuesday, June 23, 2009
Let The Therapies Begin!!
We have finally begun Occupational Therapy for Hubercito. A couple weeks ago we had a rough evaluation to qualify him for services. He was accepted and has had 2 sessions so far. His teachers name is Christine and we love her! Hubercito gives her a big smile when she comes and he goes into flirt mode.
Our main goals for this upcoming school year (they go for summer vacation starting in a couple weeks then restart a new school year) for Hubercito is to work on his feeding (latching quicker and better), sleeping (to hopefully get him asleep quicker and stay asleep without me laying down with him) and of course the important sitting, rolling, and crawling. Our first session was very encouraging tho, when we put him on his tummy he will usually bring his knees up into a crawling position. When we stand him he occasionally will bring one foot forward. These we were told are very good signs that he is ready and willing to start working towards crawling and walking. You can see that he understands and wants to, he just cant get his body to do what he wants. But Christine told us that for him to even be trying is a very good sign because some kids are scared shifting weight from 2 feet to 1 for example. She said that she can see his determination and for that she requested to come twice a week rather then once so she can give us some advice and things to work on with him while they are out for vacation.
Our second session she watched how I normally put Hubercito to bed and gave me suggestions to try such as a weighted blanket so he feels the closeness of something against and on him and to even put once of my shirts close to him or on a pillow so he has my scent near him to hopefully encourage him to stay asleep without me laying with him. She also watched me give him a bottle and said that she is very impressed with his determination again and to try massaging around his jaw and tongue before giving him the bottle in hopes that he will latch quicker and easier.
All in all I am very pleased with how it is all starting. She is very optimistic about what he will be able to do later on and very encouraging. Hubercito has a ways to go but I definatly feel more confident in the therapies he is receiving here that he is getting what he needs.
Our main goals for this upcoming school year (they go for summer vacation starting in a couple weeks then restart a new school year) for Hubercito is to work on his feeding (latching quicker and better), sleeping (to hopefully get him asleep quicker and stay asleep without me laying down with him) and of course the important sitting, rolling, and crawling. Our first session was very encouraging tho, when we put him on his tummy he will usually bring his knees up into a crawling position. When we stand him he occasionally will bring one foot forward. These we were told are very good signs that he is ready and willing to start working towards crawling and walking. You can see that he understands and wants to, he just cant get his body to do what he wants. But Christine told us that for him to even be trying is a very good sign because some kids are scared shifting weight from 2 feet to 1 for example. She said that she can see his determination and for that she requested to come twice a week rather then once so she can give us some advice and things to work on with him while they are out for vacation.
Our second session she watched how I normally put Hubercito to bed and gave me suggestions to try such as a weighted blanket so he feels the closeness of something against and on him and to even put once of my shirts close to him or on a pillow so he has my scent near him to hopefully encourage him to stay asleep without me laying with him. She also watched me give him a bottle and said that she is very impressed with his determination again and to try massaging around his jaw and tongue before giving him the bottle in hopes that he will latch quicker and easier.
All in all I am very pleased with how it is all starting. She is very optimistic about what he will be able to do later on and very encouraging. Hubercito has a ways to go but I definatly feel more confident in the therapies he is receiving here that he is getting what he needs.
Monday, June 8, 2009
California Love
As most of you family and friends know we made the big move to the Fresno, California area about a month ago! It was a very difficult decision to make, leaving behind friends and family who mean a lot to us. But when it all came down to it there is more work for Huber down here and better services for Hubercito.
Huber has been working for a farm service company for almost 2 months now (he came a month before we actually officially moved.) He drives a tractor spraying the fruit trees and fields. From the start he weaseled his way into being the favorite getting the 'good tractor' with enclosed windows, radio and air conditioning) while the other guys had the older tractors. He likes it and definatly likes getting those paychecks! He has been working nights so we don't get to see him as much as we were used to in Oregon with working at night and sleeping during the day but he has to work as much as he can while there is work for him.
Hubercito has been growing like a lil weed and has finally reached the 20lbs I have been forever waiting for! He is starting to be a lot more aware of his surroundings and more interested in his toys and the people around him. He knows what he wants and is slowly learning his own way to get it. Although he still doesnt have much use with his arms he is trying hard to reach for things he wants and will soon figure out his own way to get it. We had an evaluation this morning with Early Intervention out of Fresno. They were a nice bunch of people and I look forward to working with them and seeing some progress. Hubercito took to a couple of the ladies right away, giving them the flirty eyes and big smiles. Now that we have that started we can hopefully get his Medi Cal accepted and then will be able to get him into a pediatrition.
As for me, I have just been trying hard to get everything started for him and other then that not much lol. We just moved into our own place after staying with Hubers family for a month. It is only 2 blocks from them so when Huber is working I can still come hang out over here so Im not alone all the time. We got a 2bdrm, 1 bath duplex. It is really nice inside and has tons of room and storage for all our stuff. I love it!
Anyways though I will be able to update this more so be sure to check back to keep up with lil mans progress!!
Huber has been working for a farm service company for almost 2 months now (he came a month before we actually officially moved.) He drives a tractor spraying the fruit trees and fields. From the start he weaseled his way into being the favorite getting the 'good tractor' with enclosed windows, radio and air conditioning) while the other guys had the older tractors. He likes it and definatly likes getting those paychecks! He has been working nights so we don't get to see him as much as we were used to in Oregon with working at night and sleeping during the day but he has to work as much as he can while there is work for him.
Hubercito has been growing like a lil weed and has finally reached the 20lbs I have been forever waiting for! He is starting to be a lot more aware of his surroundings and more interested in his toys and the people around him. He knows what he wants and is slowly learning his own way to get it. Although he still doesnt have much use with his arms he is trying hard to reach for things he wants and will soon figure out his own way to get it. We had an evaluation this morning with Early Intervention out of Fresno. They were a nice bunch of people and I look forward to working with them and seeing some progress. Hubercito took to a couple of the ladies right away, giving them the flirty eyes and big smiles. Now that we have that started we can hopefully get his Medi Cal accepted and then will be able to get him into a pediatrition.
As for me, I have just been trying hard to get everything started for him and other then that not much lol. We just moved into our own place after staying with Hubers family for a month. It is only 2 blocks from them so when Huber is working I can still come hang out over here so Im not alone all the time. We got a 2bdrm, 1 bath duplex. It is really nice inside and has tons of room and storage for all our stuff. I love it!
Anyways though I will be able to update this more so be sure to check back to keep up with lil mans progress!!
Monday, March 9, 2009
Lil Man & His Bottle
I made and gave Hubercito his normal 'one-try practice bottle' the other day and he took off sucking that formula down! I was shocked! Since we got the green light to oral feed him he has had some trouble latching on and staying latched on causing him to get frusterated. It usually resulted in him only drinking about an ounce at the most. But for some reason this day he just went at it and drank about half the lil bottle I made for him (maybe 3 oz) and without choking and pretty quickly.
I have since been offering him his bottle or trying to every 2 or 3 hours in hopes that he will drink enough to keep him satisfied throughout the day and then I will only have to plug him to the pump throughout the night. That would make life amazingly more easy for me.
We had a lil throwing up last night so we are taking it a lil easier today supplementing with some Pedialyte to make sure he doesnt get dehydrated. One of his 2 teeth that have been coming in looks as if it has broke through and the other is close behind. He had a fever and wasn't feeling so great last night, Im thinking for that.
Since getting the green light to feed him orally my goal is by the end of this year for him to be able to eat entirely through his bottle and baby food and get his g tube taken out! Seeing him enjoy his bottle and want it and doing such a great improvement I am reassured that that is a very likely goal for him this year!
I have since been offering him his bottle or trying to every 2 or 3 hours in hopes that he will drink enough to keep him satisfied throughout the day and then I will only have to plug him to the pump throughout the night. That would make life amazingly more easy for me.
We had a lil throwing up last night so we are taking it a lil easier today supplementing with some Pedialyte to make sure he doesnt get dehydrated. One of his 2 teeth that have been coming in looks as if it has broke through and the other is close behind. He had a fever and wasn't feeling so great last night, Im thinking for that.
Since getting the green light to feed him orally my goal is by the end of this year for him to be able to eat entirely through his bottle and baby food and get his g tube taken out! Seeing him enjoy his bottle and want it and doing such a great improvement I am reassured that that is a very likely goal for him this year!
Thursday, March 5, 2009
Damn Chompers
For months now we have watched Hubercito's 2 bottom teeth come to the surface and then go back down into hiding. Over and over. They are now right there where you can see the whiteness and see the outline of the top of them. They just need to break through!
Poor lil man has been extra grumpy and cranky for these teethies. We have been applying the baby oragel and putting cold washcloths on it which seem to calm him a little.
I cannot wait to see those cute lil pearly whites pop through and be sitting there. He will look sooo cute with chompers.
Poor lil man has been extra grumpy and cranky for these teethies. We have been applying the baby oragel and putting cold washcloths on it which seem to calm him a little.
I cannot wait to see those cute lil pearly whites pop through and be sitting there. He will look sooo cute with chompers.
Some much needed pics
So I promised some pics about 2 months ago lol. You will learn this is just how I am...
Monday, March 2, 2009
CDRC Progress
We had our other visit with the CDRC through their outreach program where they come down to Medford from Eugene. I had been trying to get this set up since forever so I was VERY excited to have got Hubercito an appoinment. Apparently I later found out they are pretty well booked through the year coming about once a month. We will be put on a call list and called if someone else cannot make their scheduled appointment for later appointments.
So we start the day off with a long 2 and a half hour drive with one cranky lil man. He is getting his first teeth in, 2 at once, so he has not been his happy lil self lately. So I really didnt think we would get too much out of him during the therapy session.
Amazingly once we got there he let the physical therapy lady do just about whatever she wanted with him lol. Different stretches, playing, checking out some new toys etc...
We have physical therapy come to our home once a week where they stretch him. But with the CDRC she would for example, lay him down and move his leg to where it needed to be to get ready to roll over, then move his arms into position, then roll over etc etc. Basically showing him how to get to his stomach of he wanted or needed. We worked on rolling over, sitting up and being on his tummy.
Along with him doing so great with all that we got set up for them to send us a lil bumbo chair and a different sort of boppy pillow to continue teaching him tummy time and sitting up. We also got an application for Shriners Childrens Hospital in Portland. They will focus on his legs and joints. X-raying his hips and legs and eventually fitting him for leg braces which he will need to keep his legs in proper position for standing and eventually walking! Shriners unfortunatly has a very long waiting list with a minimum wait of 6 months just to process the application to be put on the waiting list so we just did it early to have it ready.
I once again feel as if I got so much more accomplished with an out of town team then the services we recieve here in isolated Brookings. I am grateful to have got it set up and going though.
So we start the day off with a long 2 and a half hour drive with one cranky lil man. He is getting his first teeth in, 2 at once, so he has not been his happy lil self lately. So I really didnt think we would get too much out of him during the therapy session.
Amazingly once we got there he let the physical therapy lady do just about whatever she wanted with him lol. Different stretches, playing, checking out some new toys etc...
We have physical therapy come to our home once a week where they stretch him. But with the CDRC she would for example, lay him down and move his leg to where it needed to be to get ready to roll over, then move his arms into position, then roll over etc etc. Basically showing him how to get to his stomach of he wanted or needed. We worked on rolling over, sitting up and being on his tummy.
Along with him doing so great with all that we got set up for them to send us a lil bumbo chair and a different sort of boppy pillow to continue teaching him tummy time and sitting up. We also got an application for Shriners Childrens Hospital in Portland. They will focus on his legs and joints. X-raying his hips and legs and eventually fitting him for leg braces which he will need to keep his legs in proper position for standing and eventually walking! Shriners unfortunatly has a very long waiting list with a minimum wait of 6 months just to process the application to be put on the waiting list so we just did it early to have it ready.
I once again feel as if I got so much more accomplished with an out of town team then the services we recieve here in isolated Brookings. I am grateful to have got it set up and going though.
Friday, February 13, 2009
First Cold
This last week has been a tough yet uneventful week. Hubercito got his first cold. Stuffed up, sneezing, coughing. Luckily no fever. And with him being sick it has now spread onto Huber and I being sick also.
He has handled it a lot better then I thought he would though lol. I thought he would be cranky, crying all day, whiny etc. But he has handled it like a lil trooper. Only getting cranky when he is overtired as usual.
It is very hard watching your child not feel good. When he gets coughing too hard or too much I can hear in his cry that it scares him. That breaks my heart to hear. Im his mommy and I want to do everything and anything possible to make him feel better as quickly as possible but instead you just feel helpless. Not knowing if you're doing enough.
He has handled it a lot better then I thought he would though lol. I thought he would be cranky, crying all day, whiny etc. But he has handled it like a lil trooper. Only getting cranky when he is overtired as usual.
It is very hard watching your child not feel good. When he gets coughing too hard or too much I can hear in his cry that it scares him. That breaks my heart to hear. Im his mommy and I want to do everything and anything possible to make him feel better as quickly as possible but instead you just feel helpless. Not knowing if you're doing enough.
Thursday, February 5, 2009
Therapy Overload
We had an IEP meeting yesterday with Hubercito's physical therapist, vision therapist and coordinator type lady. The vision therapist brought him different things (toys, reflecting wrapping paper etc) to see how he liked them and watch his tracking. They were very surprised at how well he was tracking them and he would move his arms upward as if he was trying to grab them but just couldn't. These are things I have seen for over half a year now but apparently they hadn't. So even though I had known all along he could track and see well it is good that they finally got to see it. The vision therapist did say though that he gets distracted and loses his tracking once it tracks to a certain point (downward too far, or too far to the side) and he has a harder time tracking in the sitting position over laying down because he has to concentrate on using his muscles to sit up and track.
Afterwards we took him to a family ran Chiropractors office that my mom goes to. People have been telling me since his birth that I should take him to one to see is his spine is out of wack from his traumatic birth. A lot of babies apparently get bent out of wack on the way down the birth canal. So during our consultation he told us about how babies spines are still only cartilage so it is very easy and doesnt hurt them to just slide it back into place. After examining Hubercito he found 3 spots out of place. One in the middle of his back where his rib cages attach, one a lil higher and then the main one being on his neck. All of these could be resulting in communication not getting to the body from his brain. Which is a large part of Cerebral Palsy. So with just a gentle push he placed them all back where they should be and we will continue to go weekly for a month and then probably 2x a month and so on. He expects them to be out of place again next week but after time they should stay where they need to be. When something is out of wack it is also pushing against nerves that are connected to his organs. For example he was saying the spot at the base of his neck could be pushing against a nerve that goes to his heart and stomach.
Anyways it is hard for me to explain it the way he did but he was a very nice guy...they were all so nice there and after leaving I feel very optimistic that this could really help him. If not be able to do things he couldn't before then to atleast be more comfortable. Only time will tell though. I have read and been hearing about miraculous results though so everyone please keep him in your prayers.
Then to top off the day a call came in while we were there that on the 20th of this month we will be able to take him to Medford (3hrs away) for the CDRC outreach clinic based out of Eugene for some additional therapy. Which is what I have been wanting for him for months!
My goal for this year was therapy therapy therapy for him lol. I want to try and do it all giving him the best chances he can have and it looks like things are falling into place for him to be able to get started with it.
Afterwards we took him to a family ran Chiropractors office that my mom goes to. People have been telling me since his birth that I should take him to one to see is his spine is out of wack from his traumatic birth. A lot of babies apparently get bent out of wack on the way down the birth canal. So during our consultation he told us about how babies spines are still only cartilage so it is very easy and doesnt hurt them to just slide it back into place. After examining Hubercito he found 3 spots out of place. One in the middle of his back where his rib cages attach, one a lil higher and then the main one being on his neck. All of these could be resulting in communication not getting to the body from his brain. Which is a large part of Cerebral Palsy. So with just a gentle push he placed them all back where they should be and we will continue to go weekly for a month and then probably 2x a month and so on. He expects them to be out of place again next week but after time they should stay where they need to be. When something is out of wack it is also pushing against nerves that are connected to his organs. For example he was saying the spot at the base of his neck could be pushing against a nerve that goes to his heart and stomach.
Anyways it is hard for me to explain it the way he did but he was a very nice guy...they were all so nice there and after leaving I feel very optimistic that this could really help him. If not be able to do things he couldn't before then to atleast be more comfortable. Only time will tell though. I have read and been hearing about miraculous results though so everyone please keep him in your prayers.
Then to top off the day a call came in while we were there that on the 20th of this month we will be able to take him to Medford (3hrs away) for the CDRC outreach clinic based out of Eugene for some additional therapy. Which is what I have been wanting for him for months!
My goal for this year was therapy therapy therapy for him lol. I want to try and do it all giving him the best chances he can have and it looks like things are falling into place for him to be able to get started with it.
Wednesday, February 4, 2009
I Fell Behind...But He's Still Progressing
Ok so I have been a major slacker on updates lately! Who knows why. We celebrated lil mans 1st birthday! We had friends and family get together at a Pizza place here in town and had cake and opened presents. Hubercito wasn't too into it but we didn't really expect him to be. I will post bday pics on here for all to see.
We went to the pediatrition for his 1 year checkup. He is now weighing 17lbs and 9oz which is only some oz up from last month but still on the uphill. And he is 28 inches long which is up from 26 and a half at 9 months! So I got me a tall skinny guy. They gave him a couple shots that he needed, checked his g-tube out. The granulation tissue keeps building and then I will apply a steroid creme which gets it back down for a day or two but it has been very hard to control so she put some silver nitrate on it and it seems to be staying down a lot better. It has been leaking more though so I am hoping we will be able to afford a trip up to Portland to get it checked out by the pros who put it in. That would make me rest a lil easier. Other then that he is a healthy happy lil guy!
I have been researching the different therapies available to him a lot more lately and and hoping that we will be able to get him involved in more outside of our lil town this year. I already called the CDRC and they are checking on getting a plan for him together and verifying his insurance. I am hoping to be able to drive up there (about 4-5 hrs north) atleast once, maybe twice a month for some therapy sessions. The 2 times we have gone before it just seems like we have gotten more accomplished there then anything going on for him in Early Intervention here. I also hope to talk to some speech therapists.
I have been pressured since his birth to take him to see a chiropractor, just for a consultation and after talking to some other moms of CP babies who take their children to chiropractors as well we are going to go in today to see what they can offer for him.
Well I think that gets us back up to speed on what has been happening in the life of Hubercito lol. I will get on some pics and video postings now!
We went to the pediatrition for his 1 year checkup. He is now weighing 17lbs and 9oz which is only some oz up from last month but still on the uphill. And he is 28 inches long which is up from 26 and a half at 9 months! So I got me a tall skinny guy. They gave him a couple shots that he needed, checked his g-tube out. The granulation tissue keeps building and then I will apply a steroid creme which gets it back down for a day or two but it has been very hard to control so she put some silver nitrate on it and it seems to be staying down a lot better. It has been leaking more though so I am hoping we will be able to afford a trip up to Portland to get it checked out by the pros who put it in. That would make me rest a lil easier. Other then that he is a healthy happy lil guy!
I have been researching the different therapies available to him a lot more lately and and hoping that we will be able to get him involved in more outside of our lil town this year. I already called the CDRC and they are checking on getting a plan for him together and verifying his insurance. I am hoping to be able to drive up there (about 4-5 hrs north) atleast once, maybe twice a month for some therapy sessions. The 2 times we have gone before it just seems like we have gotten more accomplished there then anything going on for him in Early Intervention here. I also hope to talk to some speech therapists.
I have been pressured since his birth to take him to see a chiropractor, just for a consultation and after talking to some other moms of CP babies who take their children to chiropractors as well we are going to go in today to see what they can offer for him.
Well I think that gets us back up to speed on what has been happening in the life of Hubercito lol. I will get on some pics and video postings now!
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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