Yesterday went and saw the Neurologist. Not alot of change. CJ is going to have another MRI of his brain to see what's going on in his brain. All the last MRI's showed what they called "Grey Matter or spots". Earlier at Genetics appointment it was brought up to see if Neurologist would or would agree to an MRI. They are also adding doing his spine. His spine has had a bump since he was little. Now that he's older want to see if all ok or if somethings going on.
CJ also has nerve issues with the Cold and his legs but at the time, nothing to be done. We will see what the MRI's say. At this time it is not scheduled so still waiting on drs to call with time.
So, the biggest prayer request right now is that nothing is found in the MRI's and that what was saw in previous MRI's will be gone. And No more MRI's would be needed! Also for MRI day in general because they put him to sleep for it. This is always a scary part. He has been put to sleep numerous times and and come out ok. But it is hard on his little body. and it's scary for us adults and this time he's old enough to know a little more thats going on.
February 13, 2015
February 08, 2015
Why CJ is tube fed #feedingtubeawarenessweek
He has Gerd(Acid), he has slow muscles all over his body, especially in his stomach, intestines, and colon. Some have even stopped working. His body can't handle some food, we don't know why at this point, but his body will just shut down and stop accepting food at all and we have to go to a water only diet for a bit to jump start it back and switch food being fed. We have Changed to a blended food diet. That has been a miracle in helping his body. So far his body has been accepting it better than anything in the past! He used to not be able to swallow at all when younger. He is now able to swallow! Not enough to live. For some reason we are not sure yet but from his mouth down to his stomach can only take x amount of food and he than gets in alot of pain. Then his body turns into rejecting food mode.
September 10, 2014
Changing it up
Well, if you know CJ all his life he has struggled with his body handing food and formula. After X amount of time being on formula his body just shuts down and stop accepting it. We have changed so much, there is no more formulas to change to. In the past we have looked at BD (Blenderized Diet) but felt for different reasons at time that it was not what was needed for CJ at moment.
Times have changed. WE are changing his feeding to BD. Not just because it is last resort, but because of his health. He has been tube fed now for 5 years. Which means he has been fed formula for those years. He has different medical problems. From doing some research, switching to BD could help some of them or they could even go away. Thats our prayers that they go away. Plus, figure our bodies aren't meant for formula, it's meant for natural/real food. So, getting him to real food could help his body be more used to real food. Which in turn could help the process of him being able to eat on his own someday.
Doing this switch is harder on us because of finances, but as any parent you do what is best for your child. Thanks to Blendtec we got a medical discount and got a blender, which helps a lot! We have a food scale on way. Now its just little things like storage containers to have to get.
Yesterday was the first day of the transition. We will be doing the transition very slow. He has a real hard time when we switch. His poor body goes through so much. It's really hard to watch your child in pain and struggle with nothing to do to be able to help. I am excited for this change. I have great hope and faith that this is the answer. I am also nervous because if this isn't and he has problems with BD. Our options will be cut way down were he can't do formula. Really don't want to have to go down that road. So Here's to BD being the step God said to take to get him another step better!!!!
Just keep praying for him to be healed! Until that day comes, also pray for this transition to be smooth for CJ. Pray that this takes away some of his "issues" as he puts it. Pray that he would be able to eat without needing a feeding tube!
Times have changed. WE are changing his feeding to BD. Not just because it is last resort, but because of his health. He has been tube fed now for 5 years. Which means he has been fed formula for those years. He has different medical problems. From doing some research, switching to BD could help some of them or they could even go away. Thats our prayers that they go away. Plus, figure our bodies aren't meant for formula, it's meant for natural/real food. So, getting him to real food could help his body be more used to real food. Which in turn could help the process of him being able to eat on his own someday.
Doing this switch is harder on us because of finances, but as any parent you do what is best for your child. Thanks to Blendtec we got a medical discount and got a blender, which helps a lot! We have a food scale on way. Now its just little things like storage containers to have to get.
Yesterday was the first day of the transition. We will be doing the transition very slow. He has a real hard time when we switch. His poor body goes through so much. It's really hard to watch your child in pain and struggle with nothing to do to be able to help. I am excited for this change. I have great hope and faith that this is the answer. I am also nervous because if this isn't and he has problems with BD. Our options will be cut way down were he can't do formula. Really don't want to have to go down that road. So Here's to BD being the step God said to take to get him another step better!!!!
Just keep praying for him to be healed! Until that day comes, also pray for this transition to be smooth for CJ. Pray that this takes away some of his "issues" as he puts it. Pray that he would be able to eat without needing a feeding tube!
August 05, 2014
Wow and Why?
Somedays all I can think is wow and Why? Today CJ saw his Ortho dr. His heel bone is still after two years of braces, still pulling away from the foot. Plus, a few other things in feet twisting or not going the way suppose to. All made me go Wow didn't know there was so many bones and the importance of them all, and there all messed up in his foot, the left foot the worst.He is finally starting to get a little arch. All I can say is Pray! He showed me on a skeleton foot what will happen if back foot bone doesn't get better and ouch!!!!!
Also, still worried about hip. It's still not good but until feet get better and ankle and his legs get stronger there is nothing they can do. If he's not better by the age on 8 or 9 they might have to break bone in hip and fix so again still praying!
So this is my Wow and Why Day.
Also, still worried about hip. It's still not good but until feet get better and ankle and his legs get stronger there is nothing they can do. If he's not better by the age on 8 or 9 they might have to break bone in hip and fix so again still praying!
So this is my Wow and Why Day.
April 09, 2014
Transition Meeting
Today CJ had a Transition meeting at his future school for Kindergarden. It brings up a bunch of mixed emotions. It is a transition for any parent to have a child starting Kindergarden. For myself it is hard for CJ going to start because the doctors said if he was to be better he would be by 5 years old. Then the last bump up for any hope was by the time he starts Kindergarden. Well, that time is approaching. I HAVE NOT given up faith that God will heal him!
Here we are though August is around the corner and not were wanted him to be. The whole school thing, figuring out food, water, keeping his body at the balance needed to stay healthy and out of the hospital is a whole different challenge in itself when going from part time preschool to full day Kindergarden. I am glad know a lot of staff at the school and they are all great.
As for him not having a total healing YET is hard too. I was expecting God to have him completely healed by the time he started Kindergarden. Yes,I know you can't give God a time line. I will say it still hurts,saddens, and even angers though. Through it all I will not stop believing in the total healing that WILL come.
With the meeting itself today. It went great. I think CJ is ready for Kindergarden. There will be things he is behind or struggles at but I believe the staff is awesome enough there to help him out. He will be out of regular class room a lot and into special class rooms which can be hard, but I believe there will be a day where we will all look back and go WOW this is not the same boy. There will be a day where he won't have IEP's, special class rooms and even no feeding tube.
Until that day comes, I and my husband, family, and friends will continue to pray for the healing that WILL come!
Here we are though August is around the corner and not were wanted him to be. The whole school thing, figuring out food, water, keeping his body at the balance needed to stay healthy and out of the hospital is a whole different challenge in itself when going from part time preschool to full day Kindergarden. I am glad know a lot of staff at the school and they are all great.
As for him not having a total healing YET is hard too. I was expecting God to have him completely healed by the time he started Kindergarden. Yes,I know you can't give God a time line. I will say it still hurts,saddens, and even angers though. Through it all I will not stop believing in the total healing that WILL come.
With the meeting itself today. It went great. I think CJ is ready for Kindergarden. There will be things he is behind or struggles at but I believe the staff is awesome enough there to help him out. He will be out of regular class room a lot and into special class rooms which can be hard, but I believe there will be a day where we will all look back and go WOW this is not the same boy. There will be a day where he won't have IEP's, special class rooms and even no feeding tube.
Until that day comes, I and my husband, family, and friends will continue to pray for the healing that WILL come!
March 07, 2014
Another Baby step Forward!!!
Yesterday went to the GI Drs with many hopes. It turned out to be a pretty good appointment. CJ has problems with his colon and it has good moments than not so good. The last little while he has been in the not so good moments. We got told yesterday that there is really nothing more they can do. Medicines he's on is max and don't want to do more. We are going to add doing olive oil. Which, we prefer doing more natural things :) His body has a hard time absorbing hydration like its suppose to. We again are adding more water to the amount that he gets through his tube. Since his is taller and older :)
On an Awesome note he has been eating more. Not enough to live off of but he has been eating up to 3 to 5 bites of meat at a meal...chicken, steak, taco meet are his favs. Plus, a few other things, if its spicy, lots of taste and/or texture he loves it. If we can get his body to handle more without problems that would be great. Baby steps :) We did get the go ahead this time that we can start closely monitoring his weight, so we can.... count the calories he does eat in the day so those calories can be taken off his tube feed. Will start out slow on cutting the tube feed, since is body has a hard time with food change. This is super ecstatic news for us and CJ though. It's another step closer. Last year the Dr said no way because of many different reasons.
We continue to pray and never give up for a total healing from God. Until that day comes we Celebrate EVERY baby step of healing that God gives us! One of my biggest prayers for years deadline is coming up (and yes you can't give God a deadline :) ) that prayer is CJ be off his feeding tube by the time he starts Kindergarden. Which is this coming August. Yes, he can live and be fine even with it in and we are very thankful for it, but it would be a HUGE Celebration to not need it.
Thanks for your prayers and please continue to pray God is answering!!!! :)
On an Awesome note he has been eating more. Not enough to live off of but he has been eating up to 3 to 5 bites of meat at a meal...chicken, steak, taco meet are his favs. Plus, a few other things, if its spicy, lots of taste and/or texture he loves it. If we can get his body to handle more without problems that would be great. Baby steps :) We did get the go ahead this time that we can start closely monitoring his weight, so we can.... count the calories he does eat in the day so those calories can be taken off his tube feed. Will start out slow on cutting the tube feed, since is body has a hard time with food change. This is super ecstatic news for us and CJ though. It's another step closer. Last year the Dr said no way because of many different reasons.
We continue to pray and never give up for a total healing from God. Until that day comes we Celebrate EVERY baby step of healing that God gives us! One of my biggest prayers for years deadline is coming up (and yes you can't give God a deadline :) ) that prayer is CJ be off his feeding tube by the time he starts Kindergarden. Which is this coming August. Yes, he can live and be fine even with it in and we are very thankful for it, but it would be a HUGE Celebration to not need it.
Thanks for your prayers and please continue to pray God is answering!!!! :)
May 02, 2013
genetics and neuro dr
In last two weeks went to the neuro and genetics dr.
Neuro dr. Said his recent MRI still showed extra fluid and "speckles" on his brain. Hasnt changed much since last MRI, but will still need to keep an eye on it.
Genetics dr. They had a couple ideas. Some they are going by what they see on the MRI.They said maybe Sotos syndrome or FG syndrome? Need to do some testing to know.
In process to see how much it would cost for test..if covered under insurance? When he is able to do it. Will still have to wait 3 months to find out.
Please continue prayer.
Neuro dr. Said his recent MRI still showed extra fluid and "speckles" on his brain. Hasnt changed much since last MRI, but will still need to keep an eye on it.
Genetics dr. They had a couple ideas. Some they are going by what they see on the MRI.They said maybe Sotos syndrome or FG syndrome? Need to do some testing to know.
In process to see how much it would cost for test..if covered under insurance? When he is able to do it. Will still have to wait 3 months to find out.
Please continue prayer.
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