Wednesday, November 11, 2009

surgery update....

JJ had surgery this morning at 7:40 a.m. it lasted 2 and a half hours, longer than we had anticipated because of the enormity of his hernias... They had to seperate all of the blood vessels, the vas defryns and what not all very carefully so it took awhile... They also were able to go ahead and circumcise him. Normally we would have done it at birth but they would not do it then because of the risk of infection.. SO, he is NOT happy about that part.. He did GREAT as far as the oxygen support goes.. He was NOT happy to even be back in Seattle, as soon as we landed yesterday he said "i HATE Seattle." I can't really blame him, while it is a wonderful place, all he has known of Seattle is the pain of surgeries... We will be here until next wednesday so maybe he will feel better about the area by then...
he is resting right now but is in alot of pain so please continue to pray for his speedy recovery.. I will post a better/longer update later this eve or tomorrow for those of you that are following...
AS I AM SO TIRED.. i am going to take a nap while he is asleep...
THANK YOU ALL......

Saturday, October 31, 2009

Update....

First of all I want to say THANK YOU!! To everyone who have been so loving towards our family. For those of you who have donated it means SOOOO much.. To those of you who have prayed for him, passed along his blog info to friends and family, told his story to someone else, sent kind words and thoughts our way, and even those who have just thought about him.. Thank you for caring.. for loving my son like your own.. for giving to people you don't even know and may never ever meet. My heart is filled with grattitude and love and words cannot express how much you all mean to our family.. You are our Angels on earth...
Our local newspaper will be running a news story about JJ and his incredible story in tomorrows newspaper. I know alot of you are probably thinking, well why didn't you do that a LONG time ago.. I guess the truth is, it's hard to ask for help... I don't feel like our family has had it so bad, I don't look at our story as a burden or struggle even though we have technically "struggled" for the past three years, We have JJ.. we have our miracle, and there are people out there that deal with tougher times then what we are every single day!! The longer you live with a situation that is dificult and trying on a daily basis, the more it just becomes "normal" i suppose... a few months back we were actually contacted by a television company in England about making a documentary on JJ's story for Discovery Health Channel.. It would have been GREAT only because I wish that there was more exposure for Omphaloceles, that people knew more about them and that the options and choices that people have for treatment were more well known. ALOT of babies born like JJ do not survive, either to term, or after birth, and alot of couples opt to terminate the pregnancy. I am SO happy that we wouldnt consider that as an option and that things have worked out for us the way they have, I know several other mothers who have had or been pregnant with "O" babies that werent as fortunate as we have been, my heart ACHES for those families... SO, if our struggle financially is the most difficult thing that we deal with then I can handle that!
JJ and this experience have taught me SO much about unconditional love and sacrifice.. and about the true GOODNESS in people..
due to the story that is running in the paper, I have set up a fund at Bank Of America for JJ for people that wish to donate that way also.... it is VERY closely monitored so any contributions that go there will go directly to paying medical bills. They will not allow us however to use any of it for expenses related to any of the rest of it. For travel costs, or anything else. So, contributions made here on the blog will go towards those things, well that and to buy JJ a new winter coat. If we have ANYTHING EXTRA it will go toward the three years of past medical expenses that we still are trying to pay from the high risk pregnancy, all the specialists, his brith, the NICU stay etc etc... and towards future medical expenses...
I hope that everyone knows that this really does go towards a good cause.. I can't think of a better cause than JJ.. if you knew how special he really is... We rent a small 2 bedroom house for our family of four, we own only one car so JJ and I walk his sister Emma to kindergarten every day.. we have stretched things as far as we can for as long as we can and we just adapt and adjust, but I cannot tell you the relief and peace that I have felt this past few days knowing that there are other people that really care and that are willing to help, that we WILL make it to this next surgery, and that maybe JJ can start living a normal life, without pain on a daily basis....
All of you that give, are the ones who make this possible.. because while we do have some insurance, it only covers some of the expenses and there are so many other expenses that go along with it, plus whatever insurance won't pay.....
I also want everyone to know, that if you are interested in watches and bows i will gladly still make and send those.. I do however need people to let me know.. you can email me at amyswearingen@cableone.net and i will get them out as quickly as I possibly can.. Again, thank you for your kindness and love and support!
p.s. for those of you who do want the watches and bows please email me your addresses to send them to, to my email.

Saturday, October 24, 2009

running out of time....







I wanted to add some new pics of some watches and bows to help try to drum up some interest in donating for JJ's trip.. I only have til the end of the month to come up with what I need and that is the end of this coming week.. otherwise i have to cancel the surgery until next year.. :( anyway please pass along the info to everyone that you know in hopes that people can give ANY amount.. every penny adds up... thank you all and please continue to keep him in your prayers.. right now he and his sister BOTH have h1n1 .. so far he has been able to stay out of the hospital with it so keep your fingers crossed...
love to you all....

Thursday, October 22, 2009

HELLLLPPPPP

I have had a few people with questions as to what this next surgery is for JJ and why.. so i wanted to clarify... When JJ had his last surgery they had hoped to be able to put his liver back inside his body and also fix his bilateral inguinal hernias at the same time.. They werent able to do that so we had to schedule another surgery.. we had hoped that it would only be the one since it was so costly but of course since it was a high risk for JJ we were ok with waiting.. they were able to put JJ's liver inside his body but not fix the hernias.. the hernias mean that he has a hole in the abdominal wall that causes his intestines to fall out into his scrotum, making it about the size of a small grapefruit.. as you can imagine, this is very painful for him, but he has never known any other way.. we have to get it fixed because it is causing the testies to go up into his abdomen which they say could cause fertility problems down the line.. not only that but most importantly it is causing him alot of pain.. he has lived his short three years knowing no different than constant pain and discomfort.. Since the surgery his liver is still protruding alot in his belly since they couldnt close the muscle wall all the way around it.. every day he has constant tummy aches and has not been able to gain ANY weight since the surgery.. (not like he could before) but now they need to check things out and decide if maybe he needs a permanent feeding tube surgically placed.. most importantly we want to figure out how to get him out of pain.. none of this was planned for, and i hated the first time to have to ask anyone for help.. we couldnt be in a worse position in our life right now to have all of this go on.. but you do what you gotta do i suppose.. that being said,... i have about a week to figure it all out and try to find a way to get this done.. if not, then i will have to cancel the surgery and wait until next year to do it after the flu season is over.. all i want is to get him out of pain.. there is nothing worse for a parent then to know that your child is in pain or discomfort and not be able to help "fix it".. we are grasping at straws here, i am still trying to offer watches or bows to anyone who can donate, we are trying to sell off anything we have that anyone else might want that we can live without.. for example, i have a video camera that i could sell and a camera lens that is a zoom lens for a dslr camera as well as an external flash.. if anyone is interested in any of that????? please let me know.. we also have a small aluminum fishing boat on a trailer that we will sell if anyone is interested, but it is here in twin falls so, it would have to be someone not too far off.. I still will continue to do the bows and watches if anyone wants to order.. i have alot of clothes in great condition that Emma has outgrown like in the 3t-4t range if anyone is interested.. lots of princess stuff... we already only have one car for our family, but if it were an option i would sell that too... anyway, Please if there is anyone out there left that isnt sick to death of hearing out story or who knows of anyone in a position to help.. or even has a dollar to spare.. every bit helps.. please please refer them to JJ's site... donations can be made at the bottom of the page at the donate now button.. you dont have to have a paypal account to donate and every penny adds up.. once we make it through this step in our lives i just cannot wait to move forward! I am sorry that i have been such a pain.. , Please keep JJ in your thoughts and prayers.. and pray that he doesnt get this horrible h1n1 severely right before he is suppose to have surgery, that everyone else seems to have.. Thank you all for listening..
love to you all!

Friday, October 16, 2009

hope....

As i sit here tonight or i guess i should say tomorrow since it is 1 am, can't sleep because well I guess because stress just does that to you.. I can't help but feel greatful for my beautiful children asleep in their beds, my other children who have moved to live with their dad because the stress here is just "too much" whom I miss with every beat of my heart... my dear husband, who never talks about what's on his mind or about the issues we deal with because he thinks that is his way of being "strong" for us... for my family who all live far away and Johns too who send support and love the best ways they can from afar... of all my dear friends close and far and those i havent seen in decades... for strangers, who are touched by my beautiful angel JJ who think of him often and can just feel that he is something special...
I am touched by everyone that is apart of my life be it a big or small role that you play, You are all forever in my heart.. As a mother I will do ANYTHING for my child... for any of my children... there is nothing too degrading, even begging strangers and family and friends to give some of what they have, to help my child... so, i ask again.. PLEASE continue to think of JJ... pray for him,.. send good karma,.. whatever it is you believe in... Please pray for me that i will have the strength to keep doing this, and that I can somehow come up with what we need to get him to where he needs to go... that i can get some sleep!!!
my hope is, that the people out there that are in a better position than i am right now.. will give... to my special little angel.. big or small it all adds up.. we are a lONG way from where we need to be right now, so please pray for my miracle!!
pass along his blog to everyone you know... anyone can donate any amount.. even without a paypal account.. right at the bottom of this blog! Thank you.. and love to all of you..

Sunday, October 11, 2009

Getting closer...





















I am running out of time to raise funds for the next surgery trip.. I have been busy making bows and watches in hopes that it might interest some folks... at this point anyone who donates over 30.00 will receive a complete watch and anyone 10.00 to 20.00 a deluxe hairbow and then between 20 and 30 we will work something out. PLEASE PLEASE PLEASE pass this to everyone that you know.. I know this sounds so desperate but I am at a place now where if I dont come up with something soon then we will have to cancel the surgery until next year because of the cold,rsv, and flu season they dont want him in the hospital after November if it can be avoided and I hate to have JJ continue to be in pain just because we cannot come up with the funds... and i have to make our travel arrangements SOON in order to go.. as it is Dad and Emma will both stay here this time so it will be just JJ and I.

Please get the word out.. every little bit helps more than you realize... anyone that can skip a lunch out, or a new outfit, or anything of that nature in order to donate to JJ will be forever blessed and i do believe in Karma... thank you all for your love and support...

Wednesday, October 7, 2009

Calling all Angels....











I know it has been awhile since my last update and I apologize for that.. I have had alot of people inquire about JJ and how we all are and the truth is, I haven't updated in so long because I have just been sorta down in the dumps lately... I know we all get that way once in awhile, but for me it's hard to keep in touch or reach out to people when I feel like that. I hope you all know that I do appreciate the love and support from each one of you that have touched our lives.. It is now time for me to pull myself out of this rut and get going onto the next episode... (it feels like i just did all of this recently) but it's that time again.... JJ is scheduled to return to Seattle for another surgery on the 11th of November, and i swear it seems like de ja vu, trying to pull it all together again to get there. Since JJ had his surgery in July, he has had alot of ups and downs. He has had ALOT of tummy pain and aches, and has not gained ANY weight.. so now we are going back to decide if repairing the hernias will help with the tummy aches, or if it is because the liver being pushed back inside, is causing pressure on his stomach. In either case it is likely that they will have to insert a feeding tube surgically into his stomach through the outside of his belly. They were unable to do this in the past because the liver was in the way.. well since putting it back in, they just had to leave it where it was but push it inside, it is still on top of his stomach so the dr is somewhat perplexed as to what to do at this point. Since the surgery his liver also was suppose to relax into place and have less of a protrusion out of his belly but that hasnt happened either.. and where they made his belly button, after it got infected it scarred flat so now it pretty much just is like a flat circle scar, but that's ok.. (only JJ doesnt understand so he thinks that all of his tummy aches are because he got a new bellybutton) all of this on top of Emma going to kindergarten and bringing home EVERY germ known to man, JJ has been continually sick since July with either tummy aches, colds, throwing up, etc... so we dont get the chance to go out much other than to walk Emma to and from school twice a day. Now that the weather is getting yucky (we had our first snow storm on sunday and it snowed several inches that stuck on the ground... pretty early in the year for snow) but it also means we are out even less so that in itself is somewhat depressing..


HOWEVER, JJ is still a little trooper, and while i may get down in the dumps I am so proud of him and so greatful at how far he has come.. we do alot of little projects around the house, and i have alot of supplies from over the years, so I decided to put some of those to good use and have started making interchangeable beaded watches as well as headbands and hair bows.. I am going to try to sell some of these to raise money again to get us to Seattle for this next surgery. We don’t have much time but we had so many people that reached out to us last time and were there when we really needed it, I know that Christmas is approaching and that the economy is crappy, but any little bit helps so much and adds up.. so I ask again if any of you that have anything to spare, and are willing to give to our worthy cause (and boy is JJ worth it) please donate at the bottom of the page of JJ’s blog at http://www.teamhelpjj.blogspot.com , please email his site to everyone that you know, get the word out again.. and in return, i know it isnt much but to everyone that donates, i will put in a drawing for a raffle of either a watch face with two beaded watchbands of your choice, they are interchangeable and hook to the face with two lobster clasps on each end. OR a girls head band with two bows of your choice they are also interchangeable.. the bows hook to the woven headband with a lined alligator clip or can be worn alone. I have posted some samples of what I am talking about below..I will raffle off a few of each after we receive donations and then will contact winners to find out colors and sizes and which you would like.


ALSO, if you are interested in buying a custom watch, or headband, or bows, i will custom make them for you. you just tell me the colors you would like and i will make them especially for you.. I can do holiday colors, school colors, your favorite outfit colors etc etc. They will make GREAT gifts... Im not really sure on a set price that i am going to sell them for yet, but probably around 20 dollars a watch band and 10 dollars a face, and for the headbands 10 and 6 for the bows? I hope that sounds fair.. I am open and willing to any suggestions on pricing or anything like that.. like i said, i am hoping to go forward and do this on a more regular basis. ALL of these proceeds will go to JJ, his surgeries, and medical bills.. so if you want to donate a higher or lower amount but would still like a watch or headband, please just email me so we can discuss it because I want people to get something in return for their donations and right now this is the only thing i can think of that i have the supplies for.. and of course lastly, PLEASE PLEASE PLEASE... keep JJ in your thoughts and prayers.. He needs all the love and support that he can get! and so does our family... Thank you to all of you for your kindness, your love, support and thoughts.. you are our EVERYDAY ANGELS! we love you all... email me at amyswearingen@cableone.net

P.S. the pics of Emma are just to show you an example of how incredibly cute these headbands and bows are.. the bows can be worn alone, with the woven headband, or with other headbands like the corchet one she is wearing in the pic with JJ...