I just realized that I haven't updated for awhile. We have been busy,busy with all of Joel's therapy session etc. Joel is doing well and making many strides, he now is drinking all of his formula through a cup during the day, so no more pushing through his tube unless we are in town. Its so much fun having him start to do normal things. "The way it should be" He is starting to talk some verbally even though its been a struggle for him. He says mama, dadaa, poppa, nana, sis, for sissy. He is signing like crazy and will put 2-3 word sentences together with sign mixed in with his verbal skills. He also can say almost all of his alphabet sounds.
His weight has been staying the same, increased a little bit, but he has had a growth spurt and you can definitely tell he's taller as he can reach things like the light switch now or get into a drawer that he couldn't reach beforehand.
He is such a joy and is just all over. He's starting playing the WII and now we have created a WII monster. He even will do the sign for game and please without any initiation from anyone.
We are so proud of him. He will be 4 on July 12 and its coming quickly !!
Hope everyone has a safe and wonderful Summer....
Jason, Treena, Ashley and Joel
Thursday, June 23, 2011
Friday, February 4, 2011
WEIRD HAPPENINGS POSITIVE CHANGES!!
Things are going well in the Vickoren household. So far so good!!!
We have a new addition to our family, a 10-week-old miniature australian shepheard, who is full of energy.
Joel just loves him to death and they feed off each other continuously. I do have to separate them and put them each in their own corners. :)
We have had an interesting month and yes, its only February 4th.
Last week we had a mishap with Joel's feeding pump, it just stopped working without any warnings. So, we called our infusion department and Jason met them at 9:30 pm to get a loaner pump. Yeah! we can rest easy, NOT !! the very next day the second pump stopped working. Beginning to wonder what was going on, let alone starting to panic, because now there isn't another spare. I immediately called his team of Dr's in Nebraska to let them know what was happening and to find out how they would like me to keep him hydrated. They said to take 150cc's and push through his tube with a syringe 6x's a day, so I wouldn't have to be up all night. Well, I didn't feel comfortable in letting him go all night without anything, so I was up every 4hours instead. He tolerated so well, that I emailed them and asked if we could do something different, and they said sure. Now he is OFF of his pump "ALL DAY LONG"
and only on an infusion from 8-10hrs/night and tolerating well. His weight has actully increased and he is now 30lbs.
I have learned with our lit'l man, that things aren't always as they appear. Whenever something strange happens,something positive happens.
I'll try and post some pic,my computer has been down and I am at work updating his blog.
Looking forward to Spring/Summer ready for nice Sunny wheather. Thanks to the groundhog (hehe)
We have a new addition to our family, a 10-week-old miniature australian shepheard, who is full of energy.
Joel just loves him to death and they feed off each other continuously. I do have to separate them and put them each in their own corners. :)
We have had an interesting month and yes, its only February 4th.
Last week we had a mishap with Joel's feeding pump, it just stopped working without any warnings. So, we called our infusion department and Jason met them at 9:30 pm to get a loaner pump. Yeah! we can rest easy, NOT !! the very next day the second pump stopped working. Beginning to wonder what was going on, let alone starting to panic, because now there isn't another spare. I immediately called his team of Dr's in Nebraska to let them know what was happening and to find out how they would like me to keep him hydrated. They said to take 150cc's and push through his tube with a syringe 6x's a day, so I wouldn't have to be up all night. Well, I didn't feel comfortable in letting him go all night without anything, so I was up every 4hours instead. He tolerated so well, that I emailed them and asked if we could do something different, and they said sure. Now he is OFF of his pump "ALL DAY LONG"
and only on an infusion from 8-10hrs/night and tolerating well. His weight has actully increased and he is now 30lbs.
I have learned with our lit'l man, that things aren't always as they appear. Whenever something strange happens,something positive happens.
I'll try and post some pic,my computer has been down and I am at work updating his blog.
Looking forward to Spring/Summer ready for nice Sunny wheather. Thanks to the groundhog (hehe)
Saturday, January 1, 2011
HAPPY NEW YEAR 2011
Well, I hope everyone had A Great Christmas and Happy New Year.
Just thought I would do a quick update, since I'm at work on New Year's Eve, saying my prayers that it stays uneventful.
We had a great Christmas,Joel actually got into Christmas this year and actually was unwrapping. He loved everything he got. He played with almost everything. Even if it was for just a few mins. One of his favorites were a big bag of duplo leggos. We had to hide them, so he could finish opening his presents.
We are still moving forward with things. Medically things are stable right now as far as his continuous tube feeds and the outpout from his little gut. "So far so good" this is our quote.
He is starting to eat more and more solid pureed foods and is exciting to watch.
He is in Occupation therapy and Speech therapy starting after the first of the year 2x's/week. We is really starting to babble and its nice to hear a few things come from him verbally.
We are finding out that he does have some normal developmental delays, which is to be expected. Especially as much as he has been in the hospital and under sedation.
They are also saying he is showing some signs of a learning disability.
We took him for a screening hearing test this last month and found out that he didn't pass. He passed completely in the left ear, but in the right ear it says deferred. So, Monday, January 3rd, we will be in Portland for a specialized hearing test. With once again, he will be sedated. Its a 2hour test that will actually show us how the brain and the ear are responding together, what sounds he is hearing and what frequencies he can or cannot hear.
It will be nice to officially now, and how we will attack this issue.
I know it seems like allot as I type this, just one more thing we have to deal with. But we are so blessed that he is no longer on the transplant list, and that he is becoming a normal rambunkhes little boy.
He is showing signs of wanting to be potty trained and he's decided he doesn't like pants on. He keeps taking both the diaper and the pants off multiple times a day.
I will post more next week for the results of his hearing test.
HAPPY NEW YEAR EVERYONE and may 2011 be a yearh of Joy, change and good things to come!!!
Just thought I would do a quick update, since I'm at work on New Year's Eve, saying my prayers that it stays uneventful.
We had a great Christmas,Joel actually got into Christmas this year and actually was unwrapping. He loved everything he got. He played with almost everything. Even if it was for just a few mins. One of his favorites were a big bag of duplo leggos. We had to hide them, so he could finish opening his presents.
We are still moving forward with things. Medically things are stable right now as far as his continuous tube feeds and the outpout from his little gut. "So far so good" this is our quote.
He is starting to eat more and more solid pureed foods and is exciting to watch.
He is in Occupation therapy and Speech therapy starting after the first of the year 2x's/week. We is really starting to babble and its nice to hear a few things come from him verbally.
We are finding out that he does have some normal developmental delays, which is to be expected. Especially as much as he has been in the hospital and under sedation.
They are also saying he is showing some signs of a learning disability.
We took him for a screening hearing test this last month and found out that he didn't pass. He passed completely in the left ear, but in the right ear it says deferred. So, Monday, January 3rd, we will be in Portland for a specialized hearing test. With once again, he will be sedated. Its a 2hour test that will actually show us how the brain and the ear are responding together, what sounds he is hearing and what frequencies he can or cannot hear.
It will be nice to officially now, and how we will attack this issue.
I know it seems like allot as I type this, just one more thing we have to deal with. But we are so blessed that he is no longer on the transplant list, and that he is becoming a normal rambunkhes little boy.
He is showing signs of wanting to be potty trained and he's decided he doesn't like pants on. He keeps taking both the diaper and the pants off multiple times a day.
I will post more next week for the results of his hearing test.
HAPPY NEW YEAR EVERYONE and may 2011 be a yearh of Joy, change and good things to come!!!
Saturday, November 6, 2010
Our lit'l SUPERMAN
Sorry for the long awaited post. Things have been just crazy, since I have gone back to work part-time.
Joel has been doing very well, "so far so good" is the saying these days. We are just amazed at how big he is getting. He no longer looks like a baby, or toddler. He is starting to look like a kid. Even though we hate to see him grow up,it is still a welcomed site.
Since his birthday we have started speech therapy and as of Sunday he will be starting OT(occupational therapy). After trial and error, we have finally found a good match for him. He is starting to perform and respond to her. I have never seen him do so well in a therapy session than he does for her.
Joel actually has a little time off of his TUBE FEEDS for 2 hours now and he loves it. It is so great to him without it and to be quite honest, the first couple of days we thought something was weird, because he didn't have his back pack on. :)
He got to trick or treat for Halloween this year and it was during the time off of his backpack and for a time he looked and acted just like all the other kids. It was great. He was SUPERMAN this year, got to go to the local harvest party and play in the jump house and then trick or treat and ran from house to house and put his little bucket of candy up. Mind you he could care less about the candy he just enjoyed running up and down the street.
DEVELOPMENT WISE:
He signing about 7-8 words and he's starting to put them in 2-3 word sentences.
HEARING TEST: Passed Left ear, but not his right next week we get him re-evaluated.
if he doesn't pass this one then its up to Portland, for a special sedation AVR test, so we can make sure what he can hear or not hear.
No damage to the eardrum, which is great news.
The hearing is going to be a big indicator of allot things right now. His therapist have mentioned that he may have a sensory & auditory processing disorder. It can be worked with, but with allot of hardwork.
He is such a blessing like our other 2 daughter's, and even though we have a long road a head with therapy when you look at him he just makes you melt. So worth it.
I will post some pics hopefully this weekend. I am working right now and can't access the USB cable.
He will be 3 1/2 birth age in Dec. I can't believe he's getting that old it goes by, so quickly.
Joel has been doing very well, "so far so good" is the saying these days. We are just amazed at how big he is getting. He no longer looks like a baby, or toddler. He is starting to look like a kid. Even though we hate to see him grow up,it is still a welcomed site.
Since his birthday we have started speech therapy and as of Sunday he will be starting OT(occupational therapy). After trial and error, we have finally found a good match for him. He is starting to perform and respond to her. I have never seen him do so well in a therapy session than he does for her.
Joel actually has a little time off of his TUBE FEEDS for 2 hours now and he loves it. It is so great to him without it and to be quite honest, the first couple of days we thought something was weird, because he didn't have his back pack on. :)
He got to trick or treat for Halloween this year and it was during the time off of his backpack and for a time he looked and acted just like all the other kids. It was great. He was SUPERMAN this year, got to go to the local harvest party and play in the jump house and then trick or treat and ran from house to house and put his little bucket of candy up. Mind you he could care less about the candy he just enjoyed running up and down the street.
DEVELOPMENT WISE:
He signing about 7-8 words and he's starting to put them in 2-3 word sentences.
HEARING TEST: Passed Left ear, but not his right next week we get him re-evaluated.
if he doesn't pass this one then its up to Portland, for a special sedation AVR test, so we can make sure what he can hear or not hear.
No damage to the eardrum, which is great news.
The hearing is going to be a big indicator of allot things right now. His therapist have mentioned that he may have a sensory & auditory processing disorder. It can be worked with, but with allot of hardwork.
He is such a blessing like our other 2 daughter's, and even though we have a long road a head with therapy when you look at him he just makes you melt. So worth it.
I will post some pics hopefully this weekend. I am working right now and can't access the USB cable.
He will be 3 1/2 birth age in Dec. I can't believe he's getting that old it goes by, so quickly.
Friday, July 30, 2010
July 2010 Happy 3rd Birthday Joel
I know its been along time to post and apologize. Summer is a very busy time for us, just like everyone else. We started our Summer with a camping trip that was a bomb.
Joel just turned 3 in July and is growing by leaps and bounds. He is progressing very well and getting into everything.
We had a nice gathering with lots of food and a Mickey Mouse birthday theme. I made him a Mickey mouse cake with all the trimmings.
Joel got clearance from his Nebraska medical team to have real cake. He loved it!! He had black frosting all over his mouth and it stained his lips and teeth for a day.
Joel loves playing outside and he loves the bath. He got to go swimming in a pool for the first time last week and he loved it. Absolutely no fear!! Remember this is the child that hated his bath's for the first couple of months.
He is in speech therapy 1x/week and is starting to catch on. He says mama, dada, on and a bunch of babble.
He is also signing several words and put 2 words together. His signing words are up, more, read, please and all done.
He loves books and loves having us read to him. He has just started feeding himself with a spoon and loves it. He is becoming independent, and I welcome it.
Wednesday, April 28, 2010
Darn Virus......
Things have been running very smooth, since Joel's central line was pulled out in February. Until, he got his first official cold/Virus. He ended up with a fever for 3 days and it put him over the edge as far as dehydration. He had to go to the E.R. and not being seen for 3 hours with severe dehydration he got much worse. He finally after 4 hours finally had an I.V. started and got home on Sunday Morning around 6:30-7:00 stayed the night at home and had follow-up on Monday morning with Dr's and still showing signs of still being dehydrated. example drinking from a sippy cup when he's never drank one before in his life and then doing it like a champ and drank 4 oz in 30 secs. I knew labs were off and sure enough they were. We are back in for at least 3 days to get him back up to full feeds. We resume feedings this afternoon.
Joel is growing by leaps and bounds and grown 1 full cm in height in just a month.
His weight is down, because of the dehydration. I hope that with us readjusting feeds and his growth spurt he will be back on putting the weight on.
Joel is starting to communicate some saying mama and dada
He has also started sign language and says love,up and more.
He love playing outside and hanging with dad and his sister.
Sunday, January 24, 2010
TPN Journey about to end....Yeah!!!
Well, I realized it has been so long since I've updated our blog that I have to apologize. Things are so far so good for our little short gut man. Nebraska was a wonderful and hard experience all at the same time. We missed our family more than anyone could ever know, but it was well worth it and Dr. Mercer and his team have done miracle's for our little guy.
First off they have cut his central line infections down and SO FAR SO GOOD, is the saying that we live by right now. They replaced his line after he got a yeast infection in his line while we were there. They said we don't mess with yeast its so hard to clear. So Joel received a new line and now they also have put in what is called an ethanol lock. (that's right alcohol) in his central line and let it sit for 2 hours and this helps with the bacterial and septic infections that he was getting so many of. They have found that bacteria cannot live in alcohol and its like having clorox cleaning.(metaphoric only)We also have his line coiled up and running down his back instead of down the front and this too has helped cut down on infections. This way when he pooh's at night there is not as much chance of contamination.
We went through there intensive feeding clinic while we were there and that was why when we started it I didn't have much time to post as we were there from 8:45 a.m. -4:45 pm and I was drained emotionally like you wouldn't believe. It was well worth the hard work, because now Joel will sit in his high chair and eat 2-3 tbs. of food without throwing a tantrum.
We had our follow-up appointment with Dr. Terry his G.I. on the west coast and she was very pleased and said that Joel is at his full feeds on his formula and we are starting to wean him off of his hydration fluids. Joel has been off of TPN for about 2 months and still seems to be thriving and putting on weight that they are now worried about him having a weight problem. He is running around 29lbs and is 33" in height. We have him on regular hydration fluids and just went from 10-8 hour infusions and volume was cut from 500cc's to 400 cc's so far so good he's tolerating the decrease well and will no more tomorrow as it is lab day.
We are headed for Nebraska for a follow-up appointment and the goal his to possibly take out his central line. His rate is at 77/hr right now and he is getting formula 24/7 for a continuous feeding. Their goal for him is 80 and to be weaned off of the hydration fluids for a week by the time we get there.
He has just amazed the Dr's all around and continues to bless us. Please continue to pray as it is scary to not have his central line and what still lies ahead, but we know that God is watching out for us as he has from the beginning and we trust Him completely.
The biggest issue we have right now is his speech as it is delayed. I'm hoping to start with a new speech therapist that has the same type of treatment that we had in Nebraska. He is getting frustrated at not being able to communicate with us.
We have been going to New Beginnings church and starting to get plugged in when we can. I'm almost ready to have Joel start Sunday school maybe this Summer as if he gets a cold it will be treated like a real cold instead of a line infection and ending up at the hospital for a week every time we turn around.
Joel will be 3 and we are looking forward to an exciting Summer, we will be able to go camping and he might even get to learn to swim. Sorry its so long but it has been several months since I've posted I wanted to get everyone caught up.
Please still keep the prayers coming the weaning process can be difficult and that he tolerates it well. I will try to post some pictures, as for the holidays this was the first year that we were out of the hospital for Thanksgiving, Christmas and NewYears we were very blessed.
God Bless, and In Him
the Vickoren's
Joel, Jason, Ashley and Treena
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