Our Amazing Little Miracle

Joel will be 4 next Month Wow !!

2011-06-23T23:43:00.000-07:00

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

WEIRD HAPPENINGS POSITIVE CHANGES!!

2011-02-04T01:28:00.000-08:00

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)

HAPPY NEW YEAR 2011

2011-01-01T02:16:00.000-08:00

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!!!

Our lit'l SUPERMAN

2010-11-06T00:59:00.000-07:00

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.

July 2010 Happy 3rd Birthday Joel

2010-07-30T11:44:00.000-07:00

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.

Darn Virus......

2010-04-28T08:41:00.000-07:00

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.

TPN Journey about to end....Yeah!!!

2010-01-24T16:31:00.000-08:00

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

Day 5 Hoping to be discharged today..

2009-10-20T04:28:00.000-07:00

Well, we are still admitted to the hospital, Joel is getting his new line placed and personally I can't wait. I never thought I would say that however, as many times as they are having to poke him and see bruises on my baby I am glad that they won't have to poke him anymore. They have put him on 24 hr continuous feeding with his formula and has been without tpn or omegaven for 4 days and seems to be doing well. Right now we are upping his feeding intake. He is at 53cc's times 24 hrs which rounds out to be 1271 cc's of formula. which is twice the amount that he used to get. I go up tomorrow to 54 and 1cc every day/every other day till clinic on Tuesday and we see labs and get his weight. Their Infusion science which takes care of his line, does his labs are greatThey are showing us a whole new way to care for his line etc and to help him from getting infections. Thank you Lord that we are here. I miss my family terribly and am homesick, but if it can help him from getting infections and staying out of the hospital then it is worth it. We start our feeding clinic tomorrow and pray for us as I am very apprehensive about their techniques, and have heard its very hard on the parent but He NEEDS TO EAT and this is our Giant right now and I know that nothing is IMPOOSIBLE with God.

I'll post more tomorrow and oh by the way we were discharged yesterday and had one day of relaxation....

Day 4

2009-10-15T13:05:00.000-07:00

Joel was admitted yesterday, because his line was acting funny and his antibiotic did not go through like it should. Cultures were started just to make sure nothing had leaked through and wasn't growing and sure enough as we were getting discharged this morning, they got a call that he had a yeast infection. So they took the discharge papers away :( and said we are here through the weekend. They pulled the line and added peripheal IV. and started Diflucan for the Yeast infection and continued Cipro.

He had his Small bowel series and we are anxiously awaiting results of the length and whether he would qualify for any procedures to help lengthen the bowel. I heard little bit of preliminary treatment plan from the nurse coordinator and she said that they have had patient's with less small intestine than Joel and have them off of TPN..

I'm suppose to meet with Dr. Mercer tomoorow at 9:30 and should have more details to post tomorrow. WE are holding up, leaning on the Lord and believing in hope and a miracle for our little guy. They will be teaching us new techniques for cleaning(line maintenance)and a whole new thought process on how to deal with cutting down on his infections. We will be starting feeding therapy, they are waiting to receive the paper authorization instead of Just verbal.

Thank you everyone for your prayers, thoughts and encouragement...

Our Journey begins....

2009-10-10T19:23:00.000-07:00

Well, here were are, finally in Omaha, Nebraska in our suite at the Leid transplant center. We are hoping to get into the Nebraska house tomorrow. They are a little less expensive. We will have a quiet weekend tonight and tomorrow. Then first thing Monday morning at 8:30 we start with around of tests and then clinic appointment on Tuesday. I will update as soon as I have any news on anything or results...

Never a dull moment with a Short Bowel Kid!!

2009-09-13T15:52:00.001-07:00

HI all,

We have had an extremely busy month, Joel had been on such a good spread of hospital stays and then boom ended up with a staph infection; which put us in the hospital for 4-5 days till we got the sensitivity and then back on I.V. antibiotics. We got half way through the antibiotics and then in the middle of the night Joel started shaking and his belly was as tight as a rock. We thought oh crap, an obstruction, we tried to vent and nothing. He was screaming on a scale of 1-10 pain level he was probably a 12 and as tight as a little ball all cramped up. We thought for sure we were headed to Portland. The venting did nothing and so we called his Pediatrician we gave him some ibuprofen for pain it subsided as we thought it was gas which can be extremely painful for him. He went back to sleep and we thought all was well.

The next day he started it again we took temp and 103.9 we new at that point we were going to be admitted to the INN (hope you don't mind Brogan's we liked your "INN" term we've adapted that to our vocabulary. I think i'm the only parent that brings their toilitries, curling iron, hair dryer, make-up etc. I know we're in for at least a 5 day hospital stay.

He ended up with another gut infection and this time growing 2 of them at the same time. Psudeomonious and Ciptrobactera, and we went home again on 2 big gun antibiotics, one given every 24 hrs. (gentamyacin and Cefepime every 8)

Then we are released from that hospital stay and then 3 days latter I put Joel down for a nap he's awfully quiet which you'd expect for someone supposed to be napping however Joel is usually doing something to his line and sure enough there is blood dripping from his line and hanging out of his shirt. He had bitten a hole in his central line and it was hanging by a thread. Then we are back to Portland again to the Emergency room except this time to be admitted because he was still on I.V. antibiotics and we had to put an i.v. in his arm so he could get the rest of his dosage and to give the line a 48 hrs rest after the repair. They had to repair the repair.

Now for the fun part, We are taking our little man to the Medical Center of Nebraska, they have a short bowel clinic and specializes in kids like him and have an intesive feeding program. They also try and rehabilitate the intestine that he has and to get him eating all of his nutrition by mouth. It is a 5-6 week program, so Joel and I will be leaving his sister Ashley to be in school and Jason to work and while we are gone they will be holding down the homefront.

Never A dull moment

Birthday's, Weddings and Line repair oh my!

2009-07-21T14:01:00.000-07:00

Well, July has been a very busy month for us. Joel had his 2nd birthday and was very eventful. That weekend his oldest Sister Katie who is 18 just got married on Saturday July 11th and then on the 12th we celebrated with much excitement his 2nd b-day.

Joel is quite the little man as I call him who is oh so busy! He is climbing all over the place including the dining room table,couch and whatever else he can manage to climb. We now have a slide in the back yard to help,in which he loves, but would still rather climb the furniture.

He has just started feeding and speech therapy 2x's/ week and is improving with every session. He is now eating 2 tbs. of rice cereal flavored with vanilla elecare. I have found that he does have some preferences. He prefers oatmeal to rice cereal and warm rather than cold.

I think he has decided he doesn't need either his central line or his mickey button, because the last 5 days he has tried to pull them both out and almost succeeding. On Friday during his dressing change we noticed that there was a slit in his central line,like it had been cut and we still can't figure out it happened. We ended up on Friday night making an emergency trip to OHSU emergency room praying that they would be able to repair the line. We go there at almost 9:00 p.m. we were seen in no joke 15mins and they repaired the line right there and then out the door by 11:00 p.m. I have never seen an e.r. work like they did kudo's to our OHSU !! We had to drive back because we had no TPN ,because we weren't sure if he would need to be admitted or not and so we drove back and arrived home saturday morning at 4:00 a.m. then I had to mix his TPN and hook up. What a long weekend.

SO far so good on infection, we are on an even keel right now and are very blessed.

Joel is now miracle of all miracles he has started drinking a bottle. He drank his total feeding at his noon feed today. I am hoping he is on a roll. He also with a late night last night drank 20cc's right before bed.

So that is all for right now, but continue to say prayers that he will learn to suck and swallow as well as he is. The therapist said that,that will be the quickest way to strengthen his jaws and get him talking and eating.

Long Awaited Update

2009-06-24T16:20:00.000-07:00

Well, the saying is no news is good news! and I am learning that,that is the truth.
Joel has been keeping us very busy lately,and I'm desperately trying to keep up with him. He has made big strides since March; His eating has really started to take off and he will sit in his highchair between 15-20 mins at a time and enjoys it as long as he is watching TV to distract.

He is now climbing on and all over everything. He climbs up on the couch up and down stairs and loves playing outside. He also is trying to reach the door handles,so I think it might be time for locks up at the top of the door..

We just came back from Portland, for our clinic follow-up and all-in all it had good news. Urology showed that his re-plantation of the Eureter was a success and has been taken off his last antibiotic.. Thank the Lord! Those antibiotics aren't good for healthy people let alone one that has intestinal problems. So from Urology stand point he is clear and not another follow-up until 6months.

From GI point of view they are very pleased with his progress and he has one less hour of infusion and is now on a 10 hr infusion. Yeah! and they want us to continue going up on his feeds. He has been cleared down at Stanford for an isolated sm bowel transplant, so now GI is pushing us to list him on the transplant list, even though he is doing so well. They are concerned,because of how many infections that he has had and they don't want them to get the better of him. We are very torn on this issue and are just not sure what to do. Stanford would like to see how much more we can push his gut before they would do anything and that it wasn't critical.

We are praying for guidance as to what to do and looking at all of our options.

The Roller coaster of Gut bugs that wouldn't give up...

2009-03-08T13:00:00.000-07:00

Well, the last few months have been a roller coaster of hospital stays. Joel has had GUT bugs that wouldn't give up. He had one bug after another and we were in the hospital every month for at least a week for the last 5 months.
the last break we had from the hospital only lasted a week and a half and hopefully we've killed that nasty bug.

Joel is into everything and if he's quiet he's in trouble. He is just a bowl of energy and gives a new meaning to a bouncing bundle of joy.

We had clinic appointment last month and they are very pleased with his progress. He is weighing in at 21lbs just a little over and is 29" long. He is starting to enjoy his highchair and the Dr's would like to see him eating .. His favorites are cheerios,Corn Chex,Rice, Ritz crackers and Grahm crackers..He's only have 2 poos a day which indicates he is starting to absorb his formula and solids that he's getting. His Dr. thinks his colon is starting to adapt and that is great news.

Because of the life threatning infections that he's been having we are having him evaluated for a small bowel transplant.We're still scared and yet hopeful at the same time. We haven't made any decisions yet we are just getting informed. Thanks to omegaven Joel's liver is in remission from the jaundice and does not need to have a liver transplant on top of it.

Joel's interests are Curious george cd's
Bob the builder
The Wiggles
Blues Clues
He loves Dogs

He gets to be in his first wedding this summer as his Oldest sister Katie is engaged and will be getting Married in July.. This should be interesting ..
My computer is running out of memory so I haven't been able to upload or download any pictures.. We should take care of that hopefully this week..I will try and get some pictures posted as soon as I am able.

As far as his formula intake next week he hits a huge bench mark for his feeding and reaches his targeted goal of 40 mls/hr for twelve hours which is 480cc's from the 2 we started with 19 months ago..

Joel is learning sign language to help him communicate and his signs the word please, all done,thank you, and verbally says momma and dadda and trying to say sissy and partially says the wor ugh for up.

Happy 1-year Anniversary on Omegaven & a HAPPY NEW YEAR

2009-01-02T22:08:00.000-08:00

Goodness Gracious what a year we've had! Joel is doing amazing on Omegaven and after a wonderful exciting year watching labs and his Yellow skin disappear... We are just blessed with Omegaven. Joel's MRI back in Aug showed us that the holes in his heart are closed up and it is no longer a birth defect. Praise the Lord and he doesn't have 2 aortic valvs what is does have is a right aortic valve instead of the correct left one.

His feeds have been at a stand still for the last month or so... Joel has been fighting gut bugs that have been just nasty that puts him on IV antibiotic and in the hospital for a week at a time. He has had 4 or 5 in the last 4 months. Which would explain the delayed update.

the last bug and line infection ended up with having to go UP to OHSU and there for 4 days to replace the line. We have had nothing but trouble with an infection at the site itself and with an infection that is very hard to clear. I think that's why he kept having them as if its not completely cleared that it can cause infection after infection. We had a gut bug at Thanksgiving that made our little guy a star where we ended up on TV and the quilting guild came by and gave him a wonderful quilt. We were discharged the day before thanksgiving right before the snow storm hit Medford,Orgeon which is unusal and a quick drive down to nanny and poppa's for Turkey.. Home for a couple of weeks and then Dec 12 ended up again with a gut bug and the stomach flu and landed us in the hospital for 2 weeks including line placement and isolation as everyone that entered ended up with the flu including his doctor's wife which also rounds on joel. The joke is that we had the plague...

Then we flu up to Portland and ended up with a snow ice storm up there week before Christmas.We ended up flighing out with Mercy flights because Joel can't fly commercial and almost didn't make it out because the roads were icy we arrived home Christmas eve at midnight to hurry up and do all the shopping both for christmas and for Christmas Dinner... Whew (Jason the man of the hour got the tree he and sister Ashley decorated the house and we literally threw it together. We were so thankful to be home that we got done what we could and realized that the most important is the Birth of Jesus and spending time with family and Out of the HOSPITAL

Joel is walking all over says mama and dada now and is so busy.... He loves curious George , Bob the builder and the Wiggles which we all no by heart. He was adopted by the Sparrow club this year which is a charity that helps children&families with disablities and it was such a wonderful experience.. Again joel a movie star ended up on TV again and also in the local paper. What a Year

Sorry for the long update I'll try to add frequently hope everyone has a Wonder and Happy New Year and remember Nothing is impossible with God!!!!

Good News !!!!

2008-08-28T21:10:00.000-07:00

Well we had our Follow up appointments last week and good news for our little man.
He had his MRI and we are still waiting for results on that and should receive them next week. As far as his kidney reflux his urologist said that its still pretty severe but it has improved. They will do surgery on that when he is about 18-24 months. What they will do is re-implant ureter into the bladder and bypass the kidney so its still functional but yet it will take care of the reflux. Modern medicine is amazing ! But our Lord is greater, they think that there may be the possibility of another kidney;it may be small and if it is it would not show up on an ultrasound so they would like to do some type of scan in the future for that. They said that the one kidney he has is larger than should be and that's why they are suspecting maybe there may be a second one.

Our GI docs are very impressed with his progress and they want to get him to a point to transition off of the TPN (liquid IV nutrition) and they think he is getting close to do that. I told Dr Byrne that if we got the line out of his chest that
I could do tube feedings forever and he looked at us and told us he didn't think we were going to have to do that. Praise the Lord! He is so good!

Joel physicaly is on the move, no leaving him alone for a minute. He's crawling from one end of the house to the other. Pulling himself up on everything and letting go and standing alone for about 7 seconds.

The greatest miracle of all amongst everything else is he has started drinking a bottle!!!! Yes, sucking and swallowing they said that he may never do that since he didn't learn it at birth but he continues to amaze us. It's wonderful to finally feed my son as naturally as I can at this point and it brings tears to my eyes everytime I see him sucking his bottle. He sucked 17 cc's the other night. Now mind you I do have to bribe him by watching cartoons especially CURIOUS GEORGE but whatever works. Hehe

Thank you for all the prayers and will try to keep you all updated more frequently

Almost 9 months without Hospital visit

2008-08-17T21:32:00.000-07:00

Well, we made it almost 9 months without being admitted to the hospital and
3months without having to see our pediatrician. The week of Aug. 5th Joel
ended up with a gut bug and a UTI Urinary Tract Infection that gave us one week
in the hospital and 2-weeks on IV antibiotics. He ended up with Ecoli of all things in his central line and blood stream. It came from his urine they said and he did clear it.

Being in the hospital now is a little more challenging than it was 9 months ago with him crawling all over and wanting to be mobile. His nurses (operative word nurses ) not just one loaned him an activity saucer which he loved. You could hear him through the who pediatric floor and they new when he was awake from his naps. Joel manages to flirt with every nurse he has and he ended up with the whole wing to himself and 4 nurses in his room just googling over him. (just broke his heart to have all that attention)!!

He's doing very well, crawling all over and trying to stand by himself and does for about 1/2 a sec. and then plop on the floor.

Joel is just amazing He has now decided that a bottle isn't so bad and at the most can suck on a bottle and drink between 5-12 cc's of formula by mouth. This is huge for him as he wouldn't even let near his head 6months ago. Now he watches curious george which we all now know by heart even his sister (Ashley who narrates it for us while its on) I sit on the floor with him and we will watch curious George as I feed him his bottle. Its such a satisfying thing to be able to feed him some what naturally. It brings tears to our eyes as we see what the Lord has done for us.

He still has trouble swallowing pureed stage 2 baby foods and will it some crunchy things but only if its tiny, tiny bites and then he will still gag some.

We go up to OSHU this week for follow up appointments with GI, urology , and have an MRI done of his heart to make sure that the 2nd aortic valve isn't closing off the esophagus. We will also meet with urology to see if he has to have surgery on the second eureter and to have his circumcision done and they have said this will be done on an outpatient basis.

We will be home Friday evening and I will up date this weekend.

Enough for now I need to get ready for bed and start thinking of all the things we will need for the trip up. Its amazing how much we have to pack for him even though its just 2 days.

Happy Birthday to Me! Happy Birthday to Me!!.....

2008-07-21T19:35:00.000-07:00

Well, Joel made it to his 1st BIRTHDAY and what a celebration we had. We ended up with 38 people in and out through out the day and he made out like a bandit in the present department. Every toy he got had to do with stimulation and makes music, so whenever we walk by one of his toys something goes off and makes us jump.

He is doing very well and is now crawling officially on his hands and knees. We have got a call to a Home infusion in Portland, asking for our portable feeding pump. We run his feeding over a 30min period and its more than what he can do to hold still.
We are still working on eating solid foods but from what his feeding therapist tells us is that it just will take time. He is weighing in at 19lbs even and maintaining. They have decreased the volume in in liquid nutrition(TPN) by 100cc's . He was infusing @ 650 and now down to 500 ml's. His feeding pump at night is @ his second goal of 30'ccs has been met and tolerating. He's getting a total of 360 @ night. His daytime feeding is at 42 cc's every 3 hours and so far so good they are wanting him at 50 cc's every 3 hours.

Great news today at our ultrasound for his urology stuff. He was suppose to have to ureters and through the ultrasound today thus far the tech said they could only find one. So Praise the Lord!! He has taken care of the second one and hopefully the stage 5 kidney reflux. We have more test regarding that next month and get more news ...

Where's the Beef I'm Hungry and Finally get solid foods!!

2008-07-21T19:32:00.003-07:00

Sorry its been so long since I've updated Joel's blog. We have been very busy with
Joel! He has decided that he wants to be mobile so we are on baby patrol. He has been exploring with the idea of crawling and can scoot and roll all over. He has become very active and gives his nurse Amy, and mom many check pulses throughout the day. By trying to pull on his lines and anything that he can get a hold of. His verbal sounds have grown dramatically in the last month and says dada dada , now mind you i'm o.k. with this so he can call daddy in the middle of the night, but after 2 months of daddy it would be nice to hear mama.

We had our follow up appt at OHSU with Dr. Annie Terry and they were very pleased with JOel's progress and even gave him the o.k. to eat solid foods. (gerber graduates) mind you we have to get him to swallow. With his therapy he is doing better they say it will just take time and one day he will just decide to do it. Hence the title where's the beef he gets turkey and chicken. Pasta , crackers anything with carbs to thinken up his bowels. we were needless to say very excited about the news and they also took him off his liver medicine.

He has reached his second feeding goal through his pump for formula and we should find out soon when they want to put him on a 24 hr feeding schedule. We are not quite sure what the protocol is but still anxious about when.

He will be 1 year old next month and we are so blessed by him. Even everything that we have to do. We are so greatful to the Lord and his healing power of JOel that all the credit goes to Him. Thank you Jesus for protecting and healing our son.

He also has about 8 teeth and we discovered the other night that he knows how to use them when he Split his OMEGAVEN tubing . Mom couldn't cover up for him this time we told him he was guilty as charged with the slit shaped like his mouth. I'll try to get pictures up soon...Next month BIRTHDAY CAKE !!!

PRAYER REQUESTS

Please continue to pray Joel will have an MRI in August to make sure that his 2nd aortic valve isn't closing off his esophagus. and also he will have a test to see if he still have stage 5 kidney reflux . They will be doing a test to see if he has out grown it or not. They said some kids can if its in stages 1 or 2 but not usually 5 . If God can do what he has already for Joel I believe he can take care of Stage 5. If he still has it though he will have to under go another surgery.

April 25th 2008

2008-04-25T20:49:00.000-07:00

Well, its finally Spring and we are so glad to see even a glimpse of Sunshine. We are really ready for Summer, since last year we spent ALL OF it inside at the hospital.Which means thats Joel will is almost a year. Our pediatrician tells us that one year is a huge mile stone for our little man and every one is optimistic with his progress. Everyone that sees him now thinks that there is nothing wrong.

Since we have gotten him on the Omegaven Joel has made incredible progress all the way around. He is alert, awake and active. (actually making his nurses) and his parents a little scared because now we have to watch him every second so he's not pulling on his lines.

He is weighing in @ 16lbs.02 and has blond curly hair. we will try and get pictures up soon. He has met his first feeding goals and is eating 30 cc's every 2 hours of his neocate formula and a total of 90 cc's @ night which translates to almost a full 5 oz bottle at night.

We need to pray that he will start swallowing as he doesn't show much interest. We have to encourage allot for him to actively swallow. He is getting some solids 2 tbs of oatmeal cereal and a couple of baby spoons of vegetables. His feeding therapist istrying to get his mouth excited about food so we are trying different flavors and we found out he doesn't like applesauce especially sours and sweet things.

He now has 4 teeth and putting everything in his mouth. He says dad dada and making big boy sounds. He is also rolling now from front to back and back to front and has learned to crawl on his back and scoots all over. He has now decided he likes to be on his tummy and is exploring the possibilities of scooting

The Lord has blessed us in so many ways and even with all of Joel's special needs he touches everyone he meets and we pray that God will touch people in a special way as they here his story.

Our next prayer request and visit up north will be for urology and that God would heal his Kidney reflux so that he won't have to have another surgery. Also they may do an mri for his 2 aortic valves to see if he has a ring around his esophagus that would cause him to have trouble swallowing. Those appt's will be on May 22 and 23rd .

So enough for now our family unfortunately this last weekend ended up with a viral-food poisoning from a local pizza restaurant and we are all under the weather and Joel has just a regular kid head cold so all for now and will post soon .

thank you for all the prayers they are at work!!! Praise the Lord for all He has done because he is the reason Joel is alive!

March 3, 2008

2008-03-14T22:56:00.000-07:00

Well, here we are on our way up to OHSU again!! but this time just for regular office visits we are not being admitted this time. We have a slew of dr's to see. Starting with labs to be drawn and then to our echo to see cardiology. We meet with the cardiologist to see how Joel's asd's (holes in his heart are doing) when he was born they were considered a defect because they were big enough that blood was leaking into the lungs. A little apprhensive we go to the appt and to our amazement God has healed them. The holes in his heart which he had 2 of them have closed up and the dr's said its no longer a birth defect but a physiological thing. (what ever that means??) :) We were so excited all we could do is thank Jesus for what he's done in our little guy. We still have one more issue for anyone who is wondering what to pray for next. Joel has to aortic valves to his heart which causes a ring to form around his esophagus which maybe the reason of his gagging when he eats. They will do a mri in july to rule this out so the prayer is , that God will heal that also so he doesn't need to have surgery..

After we saw the cards(cardiologist) we went and saw his GI'S and had great news there. they were so pleased with his progress that the nutritionist said let's get him off of his TPN (liquid Iv nutrition. Granted this will be a very long process as we need to get his stomach to stretch , since he was NPO(nothing by mouth) for 7 weeks. We were elated at all of the wonderful news

Joel is now up to 2 tbs of cereal per day and gets a vegetable. He's trying to roll over and is trying to say mama and dada of course he'll say mama first right ? His labs are all normal and his liver is starting to recover. Unfortunately he has become allergic to the tape we have to put over his line that goes to his chest. Oh for those parents who watch billirubin levels his total last week is o.9 and his direct is 0.4 THANK THE LORD FOR OMEGAVEN

Joel Declared No Longer Jaundiced

2008-02-25T20:55:00.000-08:00

February 25,2008

We went to Joel's Bi-Weekly Follow -up appointment today he is weighing in @
15 lbs 6 oz. His eyes are clear and his scleara the white around the eyes are no longer yellow or green. His pediatrician looked at me and said wow " HE IS NO LONGER JAUNDICE"
we received his billirubin levels today and to my amazement they are almost within
normal range. Not Joel's normal but the human race normal we are so excited.

He is up to 14 cc's of formula every 3 hours during the day and @ 40 cc's on a continuous
drip at night. Since we changed his formula from switiching to ele care during the day and neocate at nite we switched back to all neocate and hardly any (emesis) or spit up only in the morning which his GI doc's said is normal for these little guys.

The main prayer request we have now is they are going to do an echo on Monday, March 3rd to see if the 2 holes in his heart have healed. (they can't find his heart murmur anymore so hopefully that is a good sign that God has healed them.) They would like him to go to hematology oncology while we are up there as his Red Blood count is a little low
they said it doesn't mean anything but with his medical issues they are dotting their eyes and crossing their t's.

February 4th, 2008

2008-02-05T09:36:00.001-08:00

Well, we made it almost a full month without traveling up north to our wonderful OHSU
in Portland, Oregon and had just made that comment when we ended up with an emergency yesterday that sent us up here.

Joel has been doing very well with his increased feeds no line infections for 4 weeks etc. The only thing that we're concerned about now is that when his wonderful nurse (Vicki) comes to change his dressing he has a rash and we have a suspicion that he is sensative to the chlora prep that they use to sterilize his site. GRR!!! Any how
he has been itching at it for a week and its inflamed and last night he was up most of the night just irritable, thinking line infection or not feeling well we automatically start taking his temperature. Relieved only 96.7 which is great relief as many of our SBS families know.

Well, the next morning , being completely exhausted from the night before we start our day tired. We have developmental disabilties coming out for the first time so we start cleaning house. Joel was irritable and tired so I put him in his car seat to
have him with us in the stroller so I can get the house ready. Seems easy enough; should have known then. 9:00 a.m. rolls around time for morning routine of administration of medications, checking bowel tones, temp etc. so I pick him up
and all of a sudden I hear a snap and guess what it was his Hickman pulled plum out.
Heart sick and scared I immediately call 911 and knew we were back up to Portland .
So to the E.R. to get him stable and then on the plane to fly up. ( I told Joel that this is really negative attention and that we need to focus on the positive) he

2008-01-19T21:47:00.001-08:00

Starting the New Year Right with Omegaven

2008-01-19T20:24:00.000-08:00

January 1st, 2008

So here we are on our way back up to Portland to Ohsu , usually its for a line infection
but this time its for the treasured Omegaven that we have waited six months for. After hounding and hounding our physician's with daily calls to find out where we are in the process of the red tape its finally here. With anticipation and excitement we drive the long 4 1/2 -5 hour
drive north. We now know this road very well and wished we didn't at the same time.

As we drive along the road up to the hospital we have many mixed emotions and reminacing of the last 3 months up here and the future of the unknown and what life has for us and our little bundle of joy. Emotions run through both Jason and I and even our daughter Ashley who is 10
and remembering the long boring hours in the NICU with her beloved brother and wondering if we would ever have a day that we would not go to the hospital.

January 2nd, 2008

We get to the hospital and follow the long corridor that we remember well and into the pediatric floor get register and we sit and wait. Because Joel is the first one on Omegaven here in Portland, Oregon there was allot of red tape and hoops we had to go through, so when we arrived everyone was all a buzz. We do the normal routine of weigh ins and vitals which usually are every 4hrs and that means being woke up in the middle of the night. For some reason, they gave us special vitals which meant every 8hrs instead of the usual 4 (special treatment) :) !!
Oh by the way Joe is weighing in @ 13lbs 6 oz at that time we're very excited. The dreaded labs are done which most of them they do through the central line so not too bad . Joel is TPN cycle is for 18 hrs from 6:00 p.m. to 12:00pm the next day so 5:00 p.m. rolls around and everybody including physician's are running around with excitement and skepticism.

The head Pharmacist comes in and looks at me and says" your the one" I smile and say who me?
he laughs and says your the one that made me fill out all this paper work. We chuckle and then one of the GI docs come in and says guess what the Omega's are here on the the floor!! as latter we found out Joe stewart our wonderful pharmacist carried down the Omegaven personally to the pediatric floor so that nothing would happen to it. Joel gets his first dose of Omegaven. Joel's labs on the 2nd of January before omegaven looked like this
January 2nd
Liver Enzymes
ALT (SGPT) 268
AST (SGOT) 363
ALK PHOS 405
DIRECT BILI 5.0
BILIRUBIN TOTAL 8.3

January 3rd

AST (SGOT) 336
ALT (SGPT)264
ALK PHOS 378
BILIRUBIN DIRECT WAS 4.8
TOTAL BILI: 8.2

January 3rd '08

We are told that Joel will have labs drawn every day to make sure that there are no reactions
to the Omegaven. We are excited and nervous as to what the results will be finally they came
we are very excited. After one dose his enzymes showed a decrease: See above comparison