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!

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.

Some much needed pics

So I promised some pics about 2 months ago lol. You will learn this is just how I am...

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.

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.

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.

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!