History

We had a really fun time yesterday. Jordan LOVED being his ninja turtleand kept singing the theme song except putting in his name so he sang "Teenage Mutant Ninja Jordan"songs all night haha...We had a very long day at school for a parade and party, then to PopPop's house, then a nap and off to Jordan's friend Nicholas' house for trick or treating, party and play!! Jordan was so tired when we got home he went to bed at not quite 8 with no fight!!

I was a little worried that he would be not able to walk with the rest of the kids and feel uncomfrtable, but he as always surprised us and was the leader of the pack!! He and Nicholas stayed out even when the others went back to the house for being tired! Brought a lump to my throat thinking hwo special my little guy really is.....

I am going to TRY to put a link to pictures in the link section but Yahoo changed their phot site and I am not liking the trouble I am having with it now so I will put a few here too just in case :)

Have a great week...Oh Ewan is doing better and last night took some medicine by mouth so we hope that this is the first step in a recovery with no more bumps ..I will keep you posted on him. Thanks for the prayers and well wishes for him and his family....

Jordan at his school party

BOO!!!!

Teenage Mutant Ninja Jordan...

Our Hero In A Half Shell......

Well, Ewan made it through his surgery. The next 48-72 hrs are the most critical. His blood pressure is low and his heart rate high which is of some concern and he is fighting the sedation but that just proves how strong a fighter he is! So, they are adjusting the medications trying to find the right balance of sedation and all. He will be on the ventilator for probably at least today and maybe tomorrow but they are trying to wean him off so it is all very delicate the whole process....Thank you very much for the prayers,the doctors say the surgery itself went very well. So now we just pray for recovery with no bumps...
Thanks again. Have a great weekend.

Hi,
All is quiet here we are basically just hanging out, working and gearing up for halloween.

I do have a favor to ask,tomorrow is a heart friend of ours' Fontan surgery and if you could please say a prayer we would appreciate it. His name is Ewan and he has a webpage at
www.carepages.com page name
EWANKENNEDY
if you want to visit and leave a ntoe of encouragement.
The fontan is so scary and so much is up in the air. We really are hoping that he comes through with flying colors, but as always with CHD there are no guarntees.

Thanks so much and I will post an update when we hear how Ewan's surgery went.
Thanks.

Well, Jordan has finally chosen his halloween costume...Can you guess? Yep Teenage Mutant Ninja Turtle haha

Oh boy, is he excited!Jordan has worn the costume every day(at least once a day haha) since we got it and I am betting it will be a favorite for a long time :) . I will post pics when we go trick or treating with Jordan's little buddy Nicholas.

Other than that, things are good. Jordan got his flu shot this past Sat and was SO GOOD he didn't cry at all and was just the biggest bravest boy ever! We were so glad.

Then this week he does seem to have a little headcold brewing with an annoying cough but that is the only symptom so hopefully that will clear up quickly without turning into anything else.....

Today is library day so I will end here. Thanks for checking in on us.......

I got this poem off another Carepage and had to share it.....

-------------------------------------------------------

It’s a beautiful day up in heaven. Jesus is rounding up his tiniest
angels, to go live on earth, and be born.

One of the sweetest angel says to Jesus "I don’t want to leave, I
like it here, and I will miss you". He reassures the scared little
angel that everything will be okay, and that she is just going for a
visit.

She is still not swayed on this idea. So Jesus kneels down, and
says, "How about if you leave half of your heart here with me and
take the other half with you, will that be okay?"

The angel smiles and says, "I guess that will work".

But the little angel is still a little scared. She asks, "Will I be
okay with only half of my heart?" Jesus replies, "Of course you
will, I have other angels there that will help out, and you will be
fine."

Then Jesus gives the angel more details about his plan. He
says "When you are born, your mommy will be scared, so you have to
be strong, and when you feel weak just remember that I have the
other half of your heart". "Enjoy your time with your family, play
and laugh everyday."

"And when its time to come back to heaven, I will make your heart
whole again. Always remember that you are not broken, just torn
between two loves."

Every year our Township puts on a Fire Prevention Day and this year it was Sunday. It is a great event where the Fire ,Rescue and Police Departments all pull out their equipment and people can get up close looks at it all. There are all kinds of rides, food,activities and giveaways. The best part is it is all FREE!! We had such a great day, Jordan loved seeing all the trucks and the Forest Rangers had a helicopter they use for Forest fires that dumped water on a field and then landed where everyone could see it. Boy it was BIG and LOUD! Jordan also went on the carnival rides, and a pony ride and made friends with a fireman who gave him a cool pair of sunglasses and fire hats...It was really a fun time.There is a link to the full album of pictures below. We hope you enjoy them and that everyone has a great week.
Here are a few pictures...

Silly Jordan and Mommy with Jordan's Balloon Firedog

Loving Fireday

Hi Mom!

Happy Fireman Smile

Hi,
We got to take Jordan to the "Thunder on the Beach" Monster Truck show in Wildwood today. His favorite guys Gravedigger and the Teenage Mutant Ninja Turtle truck were there so he was in heaven!

The weather was great, although it was a little windy. Jordan and Bob took a ride in a Monster Truck(Jersey Devil how appropriate) and we were so happy that Jordan LOVED it. We thought it might be a little loud but nope he begged to do it again :)

We also rode the boardwalk rides and Jordan went on the GIANT Ferris Wheel for the first time. He really loved that too.
Then we had pizza and when we asked Jordan what he wanted on his (usually pepperoni) he decided he wanted one with "everything" and got a slice that had broccoli,mushrooms,tomatoes,pepperoni,sausage and cheddar cheese! Much to out amazement he ate the 'salad' all up and then took a go at the crust too!All that salt air really worked up an appetite :)
Then we had ice cream which was fun and yummy and got to pick out a pair of foam nunchucks (just like the Turtles use according to Jordan ).

So,of course I took a bunch of pictures and wanted to share,the link is in the LINK section at the bottom of the page..We hope you all had a good weekend.

p.s. if you click here you can see a short snippet of Jordan and Bob riding in their Monster Truck.

Get this video and more at MySpace.com

Today would have been David Binko's 4th birthday, please keep his family in your prayers......

Today we start the second year without precious Lauren. Thank to all of you who sent messages for me and for Lauren's family on their website.It really means alot...

Our week should be fairly quiet.Wednesday is the birthday of another CHD Angel from our heart board named David Binko, he would have been 4. Please keep his family in your prayers and thoughts as they suffer through this time without their son.

This coming Saturday we are headed to the Monster truck show and the teenage Mutant Ninja Turtle truck will be there so I can assure you that I will have some new pictures very soon.ha.

Thanks as always for stopping by to visit and please leave us a note to let us know you were here.....

Lauren enjoying the fall...

As I have said a year has passed since we lost sweet Lauren. I can't believe that it has been a year already. I cannot even begin to imagine the depth of pain her family is going through right now. I have had the privledge of becoming much closer to Steph , Lauren's mother over the past year and a half or so and she is a wonderful,loving,caring woman who lives for her children and is deeply and forever changed after losing her precious daughter. Lauren's sister Miranda also is profoundly changed by her loss. She has lost her best friend, playmate, confidante and other half. Miranda has started Kindergarten, and while it is a happy time for her, it is made bittersweet by her inability to share it with her sister. Lauren's father is one of the best Dad's I have ever known and has also gone through a private hell this year. No one who knew Lauren or has ever met this family is touched by them in ways too many to desrcibe. Even people who have only come to know them since Lauren's death are moved by the love this family exudes. I feel beyond lucky to have been able to spend some happy time with Lauren before her last surgery and also to get to see her in the hospital right before her death. She is a gorgeous, charming girl who packed more love and laughter into her 3 short years than alot of people do in their enitre lives. I hope that you enjoy seeing the photos of her and her family. We miss you Lauren and will love you forever......

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Tears Are Proof Of Life

"How long will the pain last? " a broken-hearted mourner asked me.

"All the rest of your life.", I had to answer truthfully.

We never quite forget. No matter how many years pass, we remember.
The loss of a loved one is like a major operation, part of us is removed and we have a scar for the rest of our lives.

This does not mean that the pain continues at the same intensity.
There is a short while at first, when we hardly believe it; it is rather like when we have cut our hand, we see the blood flowing,
but the pain is not there yet.
So when we are bereaved, there is a short while before the pain hits us.
But when it does, it is massive in its effect.
Grief is shattering.

Then the wound begins to heal.
It is like going through a dark tunnel. Occasionally we glimpse a bit of light ahead, then lose sight of it for a while, then see it again,
and one day we merge into the light. We are to speak, the stitches are taken out, and we are whole again.

But not quite. The scar is still there, and the scar tissue too. As the years go by, we manage. There are things to do, people to care for,
tasks that call for full attention.
But the pain is still there, not far below the surface. We see a face that looks familiar, hear a voice that has echoes,
see a photograph in someone's album, see a landscape that once we saw together and it is as though the
knife were in the wound again.

But not so painfully. And mixed with joy too.

Because remembering a happy time is not all sorrow; it brings back happiness with it.

As a matter of fact, we even seek such moments of bittersweet remembering. We have our religious memories services and our memorial days.
And though these bring back the pain, they bring back memories of joy as well.

How long will the pain last?

All the rest of your life. But the thing to remember is, the pain of grief is the price we pay for love.

(Author unknown)

Monday, September 18, 2006 6:03 PM CDT

this is basically a copy and paste from our heart board but figured I would post it here too...

Jordan had a caridologist appt today and it went really REALLY well ...whew.....
Jordan's BP was 85/72 he weighs 41 lbs and is 41.5" tall. His o2 was 96 They did an ECHO and as a surprise the tech who was the one who DX'd Jordan (when I was PG)was the one doing it. We hadn't seen him since two days before Jordan was born It was REALLY nice to see him and he was the first person ever that Jordan didn't know that was able to coax Jordan into being 'himself' and Jordan was actually holding Dennis' (the radioloigist) free hand while he did the ECHO. SO cute how they bonded .Oh and his fenestration is fully closed now. hooray.

So we are on baby aspirin a day and the same 1.2m of Lasix. The doc said when Jordan hits 50lbs we will switch over to a 2.0m pill but it is good as it is for now. He said that there are trials being done on a medicine called Alcadone (sp?) that looks promising nad we may someday switch to that but he wants to wait for all the trials to finish first....PC also said something which made us feel great and I quote haha
"He is doing excellent and there is nothing at all I can do to improve him even a litle bit so I am really pleased." How's THAT for a lump in the throat moment?? so, we can exhale for another 6months..Thanks for checking in

Saturday, September 16, 2006 6:57 PM CDT

Today we got a chance to meet the Teenage Mutant Ninja Turtles in person! Jordan LOVES the turtles and was so excited. Of course they were kinda big and he didn't want to get super close to them but he did really well and did talk to them and got fairly close, a lot closer than we thought he would for pictures, and then went up closer if I promised not to take pictures and hold his hand ha ha.
SO of course we did get some shots and I wanted to share. ....Hope everyone has a great weekend

Bye Jordan See ya In The Sewer!!

Thursday, September 14, 2006 4:51 PM CDT

Hi,
Jordan is probably the only person in NJ who is happy that is has been raining all day and is supposed to rain most of the weekend as he got a new raincoat and has been waiting patiently to wear it ha ha. Of course there is a picture and of course I wanted to share :) .
Hope everyone has a good weekend.

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Sunday, September 10, 2006 1:47 PM CDT

Hi,
Our Church had it's annual Tailgate Party this morning (who says
Presbyterians can't have fun ?haha) and I wanted to post some pix. it
was a lot of fun. Jordan had a ball playing with the football games
they had set up and loved seeing everyone in their Eagles shirts.

So,now it is halftime and we are winning so maybe all those prayers
this morning will pay off haha. Anyway, have a great day.....

Football Boy

All of Us

No Cowboys Fans Allowed haha

Sunday, August 27, 2006 4:00 PM CDT

Hi,
We hope everyone is having a good weekend.

Jordan's "Heart Sister" (his name for her) Rebekah had her 4th birthday party today and we had such a good time. It is always nice to see them as they live a little over an hour away, we don't get to visit much. We met when the kids were only 4 and 6 months old, they have both come so far it is truly amazing.
Of course I took pictures and figured I would share some.
Hope you all have a great week!!!

Happy Birthday Rebekah!!Pin The Jordan On The Donkey...

Paint Your Own Puzzle Project Fun

A Treasure Hunt!

Jordan And The Birthday Girl....

Sunday, August 13, 2006 3:51 PM CDT

Hi,
We took a little day trip to New york City yesterday and I figured I would share the photos. We had a lot of fun going to FAO Schwartz,Jordan had never been to a toy store that big before!
We also sat in the park, and walked around the city as it was such a beautiful day weather wise.

Jordan kept looking for the Ninja Turtles since they "live" in New York City ha ha-- We had dinner and drove around for a bit to see alot more of the sights.

I hope you enjoy the pictures as much as we did taking them. We hope
everyone had a great weekend.

Saturday, August 5, 2006 2:59 PM CDT

Yep, "What Happens at PopPop's STAYS at PopPop's" haha that is what Jordan's tshirt says....Well, we made it through the antiques Roadshow today(almost 3 hrs of standing in line --eek!)....The 4 things we took all together are worth about $100 !!! Oh well such is life...We did find out a little more about them though and got to see how the show is done and that was cool. There is even a point where we are very, very close to where they are filming and probably will be able to be seen so we will have to wait to watch (it will be on sometime this fall I will update when I know for sure when)

Otherwise it was a really nice day Bob and I got there early and had time to grab a bit to eat and walk around the city a bit which was nice.

As for Mr Jordan...he had a great time at his PopPop's and was none the worse for being left home so that was good. He is so not used to being told he can't go with us since we take him everywhere with us but he would have been bored to tears(we were pretty close haha)....You aren't allowed to bring cameras in so there aren't any pictures to share just afew if you click the one of Jordan above it will take you to the album of the few shots of the city and stuff I took..

Well hope you all had a great day and when I know the air date I will update. Also they took an"official" photo of us that they are supposed to email so I will have to share that when it comes too.

Have a great weekend.

Saturday, July 29, 2006 4:24 PM CDT

We spent a HOT day at the Gloucester County 4-H fair and wanted to share some pictures. Jordan had a BALL hanging out with his PopPop as always and had so much fun seeing all the animals, especially the horses and rabbits. He also loved all the tractors they had on display and loved watching the tractor pull.There were lots of games, food and fun stuff to see and do. What a day.....Hope you enjoy the pictures...

Had to find a John Deere

Taking a rest by the pretty flowers

Watching chicks hatch

Jordan,Daddy&PopPop

Monday, July 17, 2006 8:40 AM CDT

Well this weekend was a tough one thinking about the Binko family and the awful tasks they had to do with David's viewing and funeral. We are holding them very close in thought and prayer and would appreciate you doing the same.

In the midst of all the sadness we had a happy occasion to celebrate, one of our very first heart friends Justin has graduated high school and we were invited to his party this weekend. It was a good time with a bunch of "Heart Moms" I got to meet in person which is always great and Jordan got to play with one of their sons who is also a heart kid so that is always fun. The best part for me was seeing Justin at 18 and another one of the moms sons who is 19 , even though they both have their challenges they overall are doing well. It gives up much hope for the future.....Jordan and Eric at justin's grad party

Also, this weekend was the annual CHD Quilt show, it was hosted this year by a friend of mine from the HRHS board and was a great success. It was the first time I had seen Jordan's square in the finished quilt (see photo)and it brought tears to my eyes knowing all the squares on this quilt were friends from the Right Heart board, so awesome.
Jordan's block is second row 5th from the left.

In other news it is HOT HOT HOT here and humid (see thermometer picture ha ha) It is not even ten am and it is already 90 degrees, they are calling for 105 with 85umidity, so needless to say we will be in the house today lol.
I hope everyone has a good week and stays cool. Thanks for checking on us.

Saturday, July 15, 2006 10:22 AM CDT

Today is Angel David's funeral, this must be the hardest day of his familys life. Please say a prayer for the whole Binko family as they enter this new world without their beloved son,brother,grandson,nephew,cousin and we try to help our friends grieve. Thanks.

*****************************************
Tuesday, July 11, 2006 5:24 PM CDT

Our friend David lost his battle this morning at 9 am. We are so sad beyond words that another one of our heart family has to deal with the unbearable cruelty of losing their child, and we have to endure the loss of another friend. Please say a prayer for the Binko family.Thanks.

Tuesday, July 11, 2006 5:24 PM CDT

Our friend David lost his battle this morning at 9 am. We are so sad beyond words that another one of our heart family has to deal with the unbearable cruelty of losing their child, and we have to endure the loss of another friend. Please say a prayer for the Binko family.Thanks.

Monday, July 10, 2006 11:32 AM CDT

Hi,
We hope everyone had a great weekend.We went to Lowe's Sat and built a racecar! How exciting :) The best part was I thought this was just a summer program at Lowe's but they gave me the next page of the schedule and it goes all the way through October so seems like it is year round wahoo!

This coming week is pretty busy, we have a "Zoo on Wheels" to go visit tomorrow and then Saturday we have a graduation party to go to of our heart freind Justin who is 18 now and will be going to college in the fall Way to Go Justin!!! Justin and his Mom Lyn give us and so mnay heart families much hope for our own children's futures,and Lyn was one of the very first Heart Moms I met so they are special to us and of course there will be tons of pictures so check back soon !
Speaking of pictures the Lowe's pix are at the bottom here.

And speaking of heart friends, our friend David who had his fontan almost two months ago and has been having a really hard time is heading back to surgery this afternoon so please say a prayer. Thanks.

Have a great week.....

Thursday, July 6, 2006 9:30 AM CDT

Again with the double posting ...sorry if this comes through twice.......

4th of July click for our 4th of July photos.

Our visit with our cousins from Tennessee went really great. The kids had so much fun playing and us "grown ups" had a chance to talk which is always nice. I put some of the best photos below. We can't wait for their next visit at Christmas time :)
I hope everyone has a good weekend, we have another kids build at Lowe's so check back soon for more pictures :)

Wednesday, July 5, 2006 8:24 AM CDT

Well, Jordan LOVED the fireworks !!!We were nervous as he really hates loud noises of any kind, the radio,tv,thunder etc, But he did great we had a blast.

4th of July click for our 4th of July photos.

We had a really good holiday went to Family Unity Day at our local high school, then to the fireworks, we also had a cook out and watched the aprade on tv. It was quiet and relaxing just how we like it....Other than that things are pretty quiet. Our cousins from TN are up home now and we are supposed to visit with them this afternoon so I of course will update with photos after that.......

AND today is also a very dear friend of mine birthday. Jackie, who is the wonderful Mom to Joel our 16 yr old(!!!) HRHS friend from Australia. Jackie is such a wonderful,supportive, funny person. she is a true inspiration to all of us "heart Moms" who are lucky enough to know her . Jackie ,LOVE YA MATE!!!have a great birthday.

Wednesday, July 5, 2006 8:24 AM CDT

Well, Jordan LOVED the fireworks !!!We were nervous as he really hates loud noises of any kind, the radio,tv,thunder etc, But he did great we had a blast.

4th of July click for our 4th of July photos.

Friday, June 30, 2006 2:15 PM CDT

There have been 4 losses this week to the Heart Community and for those families dealing with the loss of their children it will be no joyous occasion, and we all should take time to be thankful for the blessings we have...
We are taking Jordan to the fireworks tomorrow night, so we will see how he does with the loudness, he is not fond of loud things genrally so fingers crossed.

Have a nice weekend!!We hope everyone has a safe,fun and memorable holiday.

Enjoy some of our favorite 4th of July memories.....

Sunday, June 25, 2006 6:41 PM CDT

Well the party went off without a hitch hooray! the weather held off just enough so the kids could play outside and get pony rides and have a blast! It was a really fun day and Jordan of course got spoiled rotten :)
I added the pictures in the links section at the bottom.

Another great thing is that the Lauren Faith Miller Foundation held it's first annual fundraiser yesterday and Steph called me today to say they raised $13,000!!!! That is so awesome and a true tribute to the power and love Lauuren inspires WAY TO GO!!!

Thanks to everyone who left messages for Jordan's birthday I printed them out to put in his special memories box .

Enjoy the pictures!!!

Create your own at MyspaceMate.com

UPDATE**********June 27th .Today is cousin Nathan's 4th birthday. We hope that he is having a great day and can't wait for pictures from his party this weekend.Love you Nate!!!

Tuesday, June 20, 2006 1:02 PM CDT

Hi,
I can't believe tomorrow is Jordan's 4th birthday! He is such a big boy and getting bigger everyday. We had a good day today getting cupcakes ready for his school party and we made them yellow and green to match his birthday party theme of John Deere which was fun and we even had some extra left over that we made to eat for lunch (mmm prebirthday cupcakes).
I can't even say how happy and proud Bob and I are to be celebrating this day with Jordan. Four years ago we were so anxious and nervous not knowing what was going to happen , if we would even be celebrating his first birthday and here we are with a wonderful,happy,smart boy who is the light of our lives. He is doing so great health wise (knock on wood,no jinxes)and we couldn't be prouder of him and all he has been through.

We are having a party this weekend, so I will put up the pictures next week.
Thanks as always for following us. Please sign the guestbook so we know who is visiting :)

Friday, June 16, 2006 1:35 PM CDT

We are done Jordan did AWESOME!!!!! They gave him just nitrous and he got both fillings done and never fussed at all. They put a pulse ox on him and his sats were running at 97-98 the whole time and even hit 100 a few times! When it hit 100 the first time Mommy shed the only tears of the day. Silly really but I couldn't help it. I am sure some of you get that one.
Jordan was ready to go pick out his new car we promised him as soon as the dentist took his hands out of his mouth and even told the nurse "no thank you a car is good enough" when she offered him a sticker haha.
The only so so news is that one of the teeth was really close to the pulp and he said there is about a 40hance it may abcess and need to come out but I say well then there is a 60t won't so we will keep an eye on it and go from there, a worry for another day
The other best part is they never even mentioned the bill whew!
So THANKS again for all the support and now I can breathe again (while worrying about abcesses lol)

I added zoo pictures to the link section as we went with our HLHS friend Rebekah and her Mommy yesterday and had a ball.

Tuesday, June 13, 2006 4:55 PM CDT

The 14th is the one year anniversary of our dear friend Lauren's fontan surgery and I wanted to take a minute and ask everyone who reads this to please send some good thoughts,and prayers to Lauren's family and friends. This surgery was the start of a very long,painful summer which unfortunately ended with Lauren passing on Sept 23. Tomorrow is going to start a series of "anniversaries" that are not happy ones and the family and everyone who loves them will be having some very tough times.
Thanks in advance.Jordan's dentist visit is scheduled for Fri so I will update after that

Saturday, June 10, 2006 4:41 PM CDT

Hi,
We hope everyone is enjoying their weekend. Today was another one of our "busy Saturdays " :). We started off by going to Lowe's to do June's kids class which was to build a little desk thing that has a place for pencils,paper etc.the Jordan did some of his favorite things which include hiding in cabinets and sitting on the John deere tractors at the store :)

Then we went to Toys R Us for their Camp Geoffrey which was a fun day filled with Curious George crafts and lots of free stuff :)

So, OF COURSE I took pictures ha ha and here are two of them.
Hope you like them ,have a great week.

p.s. the info for Dr Norwood I am still collecting see the journal history for more info.

Hammering Away At Lowe's

Playing In The Cabinets At Lowe's

Two Monkeys We Brought Home From Camp Geoffrey

Monday, June 5, 2006 12:18 AM CDT

Hi,
I know many of you who read this page have been affected in one way or another by Dr Norwood and his innovations either directly or indirectly. Our support group is gathering together a list of people who wish to thank Dr. Norwood and we have written a thank you note of sorts to him. If you would like to be included please email me as soon as possible and include your name, your childs name,age or date of birth,defects,and surgeries performed as well as the hosptial/surgeon that you use.

Thanks and have a great week.

Dr Wm Norwood

Sunday, June 4, 2006 9:57 AM CDT

Today our dear friend Joel turns 16!!! He is one of the many people we know and love who is affected by HRHS and he and his Mom Jackie are an inspiration to many of us with younger kids.
Joel wants to be an anesthesiolgist when he grows up , and has been doing really well in school and I have full faith he will make his dreams come true.
Even though Joel has quite a few medical issues on his plate, he very rarely complains and takes much of his conditon in stride.
I just wanted everyone who reads our page to say a special prayer for a year of happiness for Joel,Jackie and his sister Lisa too.
Thanks .

Hi,
We hope everyone had a great Memorial Day weekend. We had lots of fun playing in the pool and running through the sprinkler and we even made chocolate covered bananas yummy!!!

Not too much else going on for now,our friend David who had his fontan a few weeks ago is still struggling mightly and him and his family could really use all the prayres they can get. Thanks as always for that and for checking in.

Have a great week!

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Our friends who have gone through surgery lately are all doing much better thanks for all the prayers. David still has a way to go but there are postive signs so we are grateful and still praying.

We hope you all have a great and safe holiday weekend.

Thanks for checking on us!!!

Tomorrow is Angel Lauren's sister Miranda's 6th birthday. This is going to be such a terrible hardhsip on Miranda to have to try to 'celebrate' her birthday without her much beloved "Issy" Lauren. It is a very , very hard time for the family right now as Lauren's birthday is coming very soon and then Mother's Day follows so quickly behind. It is a time in their lives that used to be so filled with joy, but now is overshadowed by so much sorrow. If you could please say a prayer for Miranda and the whole Miller family that would be great.
Also, our heart friend Liam is back in the hospital with more fluid in his chest so he could use some prayers as well.
Thanks as always. Please enjoy the photos of Miranda and Lauren below.

Whew! Again ha ha. This trip to the dentist at our "heart hospital" was a HUGE success. We all felt so at ease there,the nurses were great, the dentist was wonderful and reassuring and very,very concerned about Jordan's heart.This combined with his very good chair side manner and it was just a great all around visit.
We discussed how best to proceed with Jordan and his cavity situation and the plan right now is to go back in two weeks for a cleaning and "trial run" to see how things go in the chair. I will be holding Jordan in the chair for the cleaning and the dentist has all faith in Jordan that he can just get gas and some non ephinepren(sp?) Novocaine for the filling. I am not so sure and if after the cleaning it doesn't seem safe then we will get a OR scheduled and they will do it with a Cardio Anesthesiologist present the entire time(there would be someone their from cardio for the gas way too).This makes us feel the best since the anesthesiologist will have been in surgery with Jordan before (they have a very small cardiac unit and we know them all) so that is reassuring to say the least. It is still of course stressful no matter what -the dentist isn't fun but we now feel that it will be as easy as it can be and more importantly safe .
Our insurance is still scheduled to change May 1st and we are waiting on info so fingers crossed that the new dental plan might cover them that would be icing on the cake (oops sorry Jordan no icing with those teeth ha ha). I will of course keep you posted.

When we got home Bob was able to finally get Jordan's John Deere tractor running in "high" gear now so I added a little video at the bottom of the page.Jordan says the new speed makes him fast like the roadrunner (hence all the meep meeping lol)

Thanks for all the good wishes and prayers for our friend Liam he is still struggling and the family is hoping he makes it home for his birthday tomorrow. I will keep you posted on him as well.
I think that is it for now.
Thanks as always for checking in on us.
Have a great weekend.

*****UPDATE**********
I just found out that Angel Avery parents who were pregnant lost their baby to be. We are very sad for their loss if you could say a prayer that would be great. You can visit their page at www.caringbridge.org/ny/averysheart

We are scheduled to take Jordan to DuPont Thursday the 27th so fingers crossed we can get this dental drama out of the way quickly and easily.
Of course as our life can never be simple, I get a letter today in the mail saying Bob's employer is switching health care companies so we may have gone through all this for nothing as the new company may cover our hospital for dental as well as medical --so we will wait and see about that but for now we are just pressing forward and worrying about Jordan's health first and money later.

Thanks for all the well wishes for our friend Liam , he is doing better moving slowly but steadily toward going home, perhaps even as soon as this weekend. Thanks for your continued support as always.
Have a great week.

p.s. The new home page photo is Jordan's school photo from this year and there is another one in the album. I also added our Easter pix to the links section at the bottom of the page . :)

Alright what a crappy way to start a week.....The "regular" ped dentist doesn't want to take the risk of working on Jordan because of his heart and recommends we go to his heart hospital for the work. Now, this is what we wanted to do in the first place but our stupid, crappy insurance won't cover the dental service at the heart hospital grrrr so somehow we are gonna have to come up with the piles of money to take him there.
It is very frustrating. I know it is not a big deal compared to what a lot of families are going through right now bt I am pretty upset over al this because everyday he goes without the teeth being fixed is another day it gets worse . So,I am going to call the scheduler at the hospital today and see what we can do.

It is Good Friday and Easter this year has an even more special meaning to us. The 16th is the second anniversary of Jordan's last open heart surgery(the Fontan). I cannot belive it has been two years already. I know some days it feels like we just left the hospital and in someways it feels like it has been a million years, a lifetime really.

It is such an emotional time for us and to have it be on Easter this year, which would have been my Mother's birthday and Easter is also the day Bob and I got engaged,needless to say this wekeend will be filled with tears both happy and sad.

Our friend Liam is struggling with his recovery so thank you for the continued prayers for him, and as always thanks for checking in on us.

Also there is a happy note, Shannon and Scott,Angel Avery's parents are expecting a new bundle of joy in about 6 months so we wish them all the best!!
Have a great Easter!!!

Whew. Is all I can say...It really went very well overall. The dentist had me sit in the chair and hold Jordan which seemed to help, we did xrays and a litttle "poke around" and it was over in about 10 minutes. Jordan has two teeth that need work,in the dr's words "one not so bad" and one kind of bad" :roll: SO ,I go back Monday to talk to the dentist about our options, so we will know more then.

I had full intentions of taking a picture of my big boy in the chair but since I was in the chair too didn't work out :lol: . I did get a shot after the appt with the new toothbrush (Power Rangers wahoo)and still all smiles so they are at the bottom. I will let you know what happens at the consultation.Thanks for all the well wishes, I think they helped :)

ooooh new toothbrush

I can still say cheese.....

Today we took Jordan to Lowe's for a make and grow workshop with John Deere (Jordan's latest obsession) and he got to make a tractor to take home. Oh,what fun we had :). Even though it was really loud with all the kids banging on their projects but he loved it and now has a brand new favorite toy that he made all by himself (well with a little help from Daddy).
I just thought I would post a picture of his joy :)

Our friend Liam at last update is still doing well so thank yo uagain for all the prayers. Also fingers crossed for us for Monday as that is when Jordan goes for his first visit to the dentist. I will update when that is over.
Thanks for stopping by.
Here is Jordan with his new tractor.

This month seems to be filled with so much sorrow.......Tomorrow March 29th would have been Angel Avery's first birthday. Her parents Scott and Shannon have done a lot toward making the day a celebration of Avery's life not a mourning of her death but it is still going to be undoubtedly a devastatingly difficult day for them to not have the guest of honor at her own party. I just wanted to let them know we are thinking of them and saying a prayer. If you could do the same it would be great. Here is a picture of the precious baby. She is so pretty. Shannon shares the stories of how Avery still visits her and I hope tomorrow is one of those visits.Thank you Shannon for continuing to share your precious Angel with us.
Happy Birthday Avery.

Thursday March 23rd is the 6 month Anniversary of Lauren Millers passing and I wanted to give her a tribute on Jordan's page becuase the Miller family means so much to us.
I cannot believe it has been half a year since she has been gone. There is still not a day that goes by that I don't at some point shed a tear for the loss of a child who so filled the world around her with love and joy.
I only got to know Lauren for a short time but in that time she has changed my life forever.
Her mother Steph is someone who I am proud to call friend. She is an amazing woman who was so strong through all of Lauren's battles and a woman who is determined to carry the legacy of Lauren with her forever.
Lauren's father Scot is also an amzing man. He loves his daughters so completely and with such ferocity . It is a heartbreak deeper than anyone can know him losing his precious Lauren.
Lauren also has a big sister Miranda, who is the sweetest, most beautiful child anyone could ever know. She is a special Earth Angel keeping her "Sissy" and her memory alive at every oppourtunity.
This family and this little girl have forever touched the hearts and lives of so many people and I just had to say on this most awful of anniversaries that I love them and the world misses Lauren's light and she will never be forgotten.
Please enjoy the pictures of Lauren and if you could say a prayer for the Miller family and all those who are mourning the loss of Lauren. Thank you.

Dancing Angel

Hi,
Today is Jordan's Daddy's birthday so
HAPPY BIRTHDAY !!!! WE LOVE YOU !!!

Daddy Getting Help blowing Out His Candles

Hi,
Jordan had a 6 month check up today with his cardiologist and I figured I would share it. He is 39" 39lbs quite the little square haha. His blood oxygen level was 94!!! This is up from last time and prompted an ECHO to check on his fenestration. His fenestraion was very small to begin with and it is now closing on it's own. The doctor says since it is closing and Jordan is tolerating it well that he isn't going to CATH him or anything and we will see him again in 6 months for a "quick check" (PC's words). He tried to put us on yearly visits and I was like um, do we have to and the Dr said well OK 6 months was fine, whew. I am not ready for that yet, I know it is a good sign that he thinks we can go that long but I need a little more time lol..Also Jordan did so well he didn't cry or anything through it all, so wonderful as he can be a terror. Even the ECHO that I hadn't prepped him for went smoothly another big whew!
So all in all the PC said Jordan looks great and he put in the request for the dental serivce as well so that fun adventure should be starting soon , but that is a post for another day .
Thanks for the wishes and prayers for a good visit they worked

Today is Avery's 6 month Angel Anniversary so if you could say a prayer for the Livoti family, especailly Avery's Mom Shannon and Dad Scott who miss their baby very, very much. Thanks.

Jason is doing well thanks for the support. Our friend Liam will have his fontan on April 13th so please say a prayer for him .
Thanks.

Hi,
All is well with us but a little boy named Jason who is part of our HRHS group is having his fontan tomrorow if you could say a prayer. The fontan is the third stage surgery that Jordan had April 2004 and is a tough one to get through for a lot of reasons.
Thanks for the prayers and I will update when I hear from them.
Thanks.

Things went well for our friend in his CATH today hooray. He is going to have his next open heart surgery soon as the family figured and there are some details to work out as far as some "extra" procedure he may need to have either then or shortly after the OHS but he did well in the proecure today so one step at a time :). Thanks for the support.

Tomorrow morning a dear friends son will be having a heart catheterization. Our friend Amanda is having some much understood stress as this test in itself is pretty major, as it is invasive and holds it's own set of risks for complications etc and it will also be used to determine when her son Liam goes for his next open heart surgery(his fourth ) so if you could please say a prayer for the whole family that would be gret. Thanks. I will let you all know when I hear from her that all went well.
Thanks again,you are all so supportive.

Things are going well, we still haven't heard from the dentist but we are hoping it will be soon. It is cold here and we are waiting for spring BIG TIME. Jordan is getting a little cabin fever haha. Luckily today is a school day so he can work some of it out by playing at school.
:)

Well now we have a new stress grrr. I found what looks to be a cavity in one of Jordan's back teeth. He has never been to the dentist and I can't imagine it is gong to be fun. Then to add to it all I called his hospital since they have a high risk pediatric dental service, which I feel he totally qualifies for and they say well his cardiologist has to send us a request , you have to send us our ins info and all this other stuff -fine. SO I call the card and they say huh ? we never heard of such a thing you are talking about DuPont hospital, (which they are in also) I am like uh yeah .....so two phone calls and twenty minutes on hold go by and finally the cards office says ok well we know what they want now but the cardiac secretary isn't here so she will have to call you back. UGH!!!So hopefully by the time this all gets worked out Jordan will still have a tooth ha ha. He also is going to need an antibiotic before we go because if he gets an infection in his blood stream things could get ugly real quick.The joys of CHD ,the gift that keeps on giving.Any words of advice from you CHD Moms who have been to the dentist would be great, he is so bad at getting his vitals taken I can't imagine how this is going to work......
Other than that things are quiet. He has an cardiologist appt on March 14th so at the outset we can hammer out all this dental stuff then. I can't imagine them saying he is not "special needs" enough for it I mean jeez, but if they reject him then I guess the cardiologist will know someone good (I hope).
Thanks for the messages for Valentine's day and for Bethy's angel Anniversary they meant a lot to us, and as always please sign the guest book and let us know you were here I print them out for Jordan to have when he is older and they are great to read.
Thanks for stopping.
Have a great rest of the week.

Today is the 1 yr Angel Anniversary of Bethy English pasing. she was a sweet little girl who was a spitfire,so full of life and so deeply loved. Bethy was one of the first children I felt "close" to that was lost and her death was very hard on a lot of people all over the world.Her Dad is very active in the first online support group I found and he always made me feel part of the "family" and gave us all such great stories and updates about Bethy that when she went for her last surgery and all the complications arose, we all felt it with him. This is of course an unspeakably hard day for her family, harder than I can imagine so if you could please say a prayer or send up a good thought for Dan,Jo,big brother Jaysen and baby sister Tamsen I would appreciate it. Thanks.

From Kidswithheart.org
Congenital Heart Defect Facts:

What is a congenital heart defect?
According to the American Heart Association, a congenital heart defect is a defect that in inborn or existing at birth. Often a congenital heart defect is also known as congenital heart disease, although, defect seems to describe the birth defect more accurate. A congenital heart defect (CHD) happens when the heart and/or blood vessles near the heart do not form properly before birth.

What causes congenital heart defects?
In most cases, no one knows the cause of a congenital heart defects. In some cases, genetics or envirnment can play a role. If a women uses street drugs or drinks to much alcohol during pregnancy, she will run a higher risk of having a baby with a heart defect. Rarely a viral infection may cause serious problems in an unborn baby. There are many factors that are currently being studied, but the truth is that we still don't know what causes most congenital heart defects.

How common are congenital heart defects?
According to the March of Dimes, congenital heart defects are the most common birth defect and the #1 cause of birth defect related infant deaths. The American Heart Association estimates that nearly 40,000 babies are born every year with a congenital heart defect and that over 1 million Americans are living with a congenital heart defect today.

How serious are congenital heart defects?
The American Heart Association says that nearly twice as many children die each year from congenital heart defects as die from all forms of childhood cancers combined! Over 91,000 life years are lost every year in the United States from congenital heart defects. Costs for impatient surgery alone exceed $2.2 BILLION a year! However, things are improving. Overall death rates have decreased tremendously over the past few years. The outlook is much better for those born with a congenital heart defect today.

What are some symptoms of a congenital heart defect?
Severe defects are typically detected before or shortly after birth. Although, some defects are not caught until much later in life. Some babies are blue or have very low blood pressure shortly after birth. Some babies have a difficult time eating, breating, and/or gaining weight. Minor defects may show no symptoms. Minor defects are most often diagnosed on a routine medical check up. If you suspect your child of having a congenital heart defect or have ANY questions, ALWAYS consult your child's doctor. Since every child is different, signs and symptoms may show up differently in children.
References:
March of Dimes
American Heart Association
American Heart Association If Your Child Has a Congenital Heart Defect A Guide for Parents Booklet

HAPPY HEART DAY
Today is Feb 14th, and while my whole life I always thought Valentine's Day was a silly holiday, now Feb 14th has a much more special meaning to me. Since we have had Jordan and have had to travel the road of Congenital heart Defects, so much has changed. We love our son with all our hearts and couldn't ask for a more loving, generous special little boy. I really hope that we can get the word out to the world someday that CHD is here,affecting so many people and is so under recoginzed.
The CHD world is filled with wonderful people, many of whom I call family.There have been so many losses,and I ask you to say a prayer for them especailly today.Some of the families that have touched our lives and lost their precious children include The English Family(Bethy), The Miller Family(Lauren), The Livioti Family (Avery), The Gibson Family(Xavier), The Hall Family (Jerra),The Gregory Family(Austin),The Kerr Family(Marybeth),The Papacoda Family (Katie) and so many more that we have met in the hospital and Ronald Mc Donald House over the years that never got to go home with their baies.Please keep them as well as all the families living day in and day out with these defects in your thoughts.Thank you .

Today even more than ever,hug your kids and your loved ones and know that today for many people is truly a "Day of Hearts."

Facts About Congenital Heart Defects (taken from SavingLittleHearts.com)
Congenital heart defects are the most common birth defect and the leading cause of death from birth defects during the first year of life.

About 40,000 children are born with a heart defect each year. Most of these children can benefit from surgery even if the defect is severe.

There is nothing that parents could have done to prevent these defects.

At least 8 of every 1,000 infants born each year have a heart defect. About 1 million Americans with cardiovascular defects are alive today.

Tomorrow is Congenital Heart Defect Awareness Day if you could please wear red and blue to honor all the families and children who struggle everyday with these defects. Also please say a prayer for the families who have lost their children especially the Miller family, the Livioti family, the Gibson family, the English family,the Hall family and all of the toher families who have touched our lives.

I also want to say a big thank you to our 'heart family',you guys have been so wonderful to us and I don't know where I would be without you all.

HAPPY HEART DAY!!

p.s. there are new pictures in the link section :)

Facts About Congenital Heart Defects (taken from SavingLittleHearts.com)
Congenital heart defects are the most common birth defect and the leading cause of death from birth defects during the first year of life.

The two types of heart disease in children are "congenital" and "acquired." congenital heart disease (also known as a congenital heart defect) is present at birth. Some defects in this category are patent ductus arteriosis, atrial septal defects and ventricular septal defects. Acquired heart disease, which develops sometime during childhood, includes diseases such as Kawasaki disease, rheumatic fever and infective endocarditis.

About 40,000 children are born with a heart defect each year. Most of these children can benefit from surgery even if the defect is severe. When surgery is necessary, many medical treatments are available to help the heart work properly. There is nothing that parents could have done to prevent these defects.

At least 8 of every 1,000 infants born each year have a heart defect. About 1 million Americans with cardiovascular defects are alive today. Though research is ongoing, at least 35 defects have now been identified.

Tomorrow is Congenital Heart Defect Awareness Day if you could please wear red and blue to honor all the families and children who struggle everyday with these defects. Also please say a prayer for the families who have lost their children especially the Miller family, the Livioti family, the Gibson family, the English family,the Hall family and all of the toher families who have touched our lives.

I also want to say a big thank you to our 'heart family',you guys have been so wonderful to us and I don't know where I would be without you all.

HAPPY HEART DAY!!

Hi,
Last year I got a proclamation from the governor to get Feb 14th recognized as Congenital Heart Defect Awareness Day. WELL this year I got him to declare the entire week from Feb 7th to the 14th as CHD Awareness WEEK!!!This is a great step toward getting CHD more to the public consciousness. I just wanted to share that.

Also I found out this morning my Grandmother has empyshema. This is terribly upsetting and we could use all the prayers you can spare thanks.

p.s. Jordan's xray came back negative for pneumonia and his cough has settled down quite a bit thank God .

Hi,
When we went to see my Grandmom today the nurse was there so we got a little info. She has an infection in her lungs, they are giving her antibiotics through an IV now hopefully the plan is to get her down to pill form then she can go home, they seem to think maybe by Wed now. They did a CT scan of her chest today and I guess it won't be until tomorrow when we get results from that, so the going home thing is somewhat dependent on what they find out from the CT scan. She is in good spirits and my Grandfather is holding up pretty well too.It is hard on him as he is used to doing all her care it is tough to "watch" . So, thanks for the prayers and I will keep you posted.
p.s. Tomorrow should also be when we get Jordan's xray results back so thanks for the prayers on that one too :)...

Ok well Jordan had to go for a chest xray today for a nasty cough he has had so we are anxioulsy awaiting the results the doctor is using the xray to rule out pneumonia and RSV. Fingers crossed and prayers being said it is not either of those very serious illnesses.
I will post again when we hear from them.Thanks in advance for the well wishes and for the prayers.

&&&&&&&&&&&UPDATE&&&&&&&&&&&&&&&&&
We are still waiting for Jordan's results grr I hate waiting. Also my Grandmother got taken to the hospital today for chest xrays of her own as she is wheelchair bound and has had a very ugly cough for a while now so they finally said she needed to go be admitted since she can't move on her own the hospital is the only way to do it...We are having a rough time here right now so thanks for the prayers.
On a good note Lauren's sister Miranda got a clean bill of health from the heart dr today so thank God for that!
I will update more when I learn anything new thanks.

****************SAT********************
Well I calle the ped office and they still hadn't heard from the hospital so I guess now I have to wait unitl Monday cripes! I am guessing though that Jordan is fine becuase other than the horrible cough he is fine and I figure if it was positive they would be in more of a hurry to let the dr's office know so fingers crossed.
My grandmom is being held another night for some more tests so please say a prayer they don't find anything unusal. She has NPH(basically water on the brain) and has a shunt in her head that was tied off becuase it doesn't work for her so this being ill it is a pretty serious thing.Because she doesn't have the motor control or strength to expel things or move on her own,this is tough on her as well as my grandfather who takes care of her.On top of losing his friend this has been a rough couple of weeks. Thanks for the prayers.

Well today was my Uncle Wimp's funeral so very sad. He was cremated so I think that makes it the tiniest bit easier but still not a fun day, thanks for all the well wishes and prayers they really helped.............
On the brighter side, Jordan got his second half of the year report card and did very well! He has gone up in just about everything (from W for working on to G for good) and got a very nice little note from his teacher about how much they enjoy having him. :)We are very proud and can't believe he has been in school a year already jeez!!!

So, that is our excitement for right now. We hope you all have a good week and thanks for visiting us .

As you know I asked for prayers for my grandfather's best friend who recently found out he had cancer (my uncle Wimp), well he died today. It is so sad and while I know he was sick he was my Grandfather's best friend for over 60 years and a big part of my family. We are all so sad right now and could use your prayers thanks as always.

Sorry if this is posted like 20 times I am having trouble with the page.

After MANY weeks we finally got Jordan's "Big Boy" room done! Drum roll please haha .Of course I thought I would share the photos. Jordan also got 3 hermit crabs (or as he calls them "Hermies") and I wanted to share the pictures of that too. his room is a castle,knight theme and he was VERY helpful as you can imagine haha.
Thanks for looking, enjoy

the pix are in the link section

Well another week starts......Jordan is feeling MUCH better thanks for all the prayers and he went to school today without too much trouble ;)

It has been a busy few days.Jordan got his first "pet" we got him three hermit crabs :) They are pretty easy to take care of and fun to watch so we thought they were a good first choice. Of course he loves them and calls them his "hermies" too funny. I will post some pix a little later.

We also finally got around to doing his 'big boy' room this weekend. It is not 100one I still need to hang stuff etc so hopefully while Jordan is at school I can do that then I will post some pictures. Jordan slept in ihs new bed for the first time last night and slept all through the night no trouble at all!!Hooray. Now the next big thing is potty training ugh.........

Anyway I guess that is it for now, I saw this photo in the Good Housekeeping for Feb and loved it and thought how appropriate so I want to share.

Have a great week.

Image hosting by Photobucket

HAPPY 4TH BIRTHDAY SERENA BEANA!!!

Sunday the 22nd is Serena's Birthday she is a beautiful little girl we have met through CHD and a blessing to have in our lives. We went to Rhode Island to visit recently and Jordan and I both had a blast, and we can't wait to visit again with them.

Love ya sweetie have a perfect Princess day!!!

GREAT NEWS!!!

Miranda is perfectly healthy. The hospital in flordia misdiagnosed her epilepsy and she had what her doctors in Ohio called a "syncopal" episode. Which basically means she just fainted or passed out and it is nothing to be worried about. They are takking her to the cardiologist to make sure it wasn't heart realted which these episodes can be sometimes , but all seems well. It is unbearable to think of what this family has been through and I am just so thankful she is ok .

Thanks again for the prayers. Jordan is doing better with his infection , still cranky and not eating great but he has had 3 days of medicine now so we are hoping he will feel better soon.

Well the update we got from Miranda's Daddy said that they have done all the testing for now and she is sleeping while they await results. She is the bravest little girl .
Thanks so much for praying for them.
On the homefront Jordan has an upper respitory infection so we are hanging out at home with some medicine from the pediatrician and hoping his cough lets up soon.

Thanks as always for stopping by.

Just wanted to update on Miranda. She is home with her family and tomorrow will be admitted to their local hospital for testing and observation hopefully it will be a short stay. She has been very brave through everything and is totally my hero.
The family is devastated and that is putting it midly. This is just a crushing insult to the injury of Lauren's passing and this family does not deserve this at all, (not that anyone does but I think you know my meaning). Please say a prayer or think a good thought or whatever you can do for a hospital stay with no more surprises and that this is something that can be controlled with medicine or she can someday outgrow it.
thanks.

I can't even believe I am writing this but the Lauren's family (The Millers) who just went to Florida to help with in-laws getting settled in after some medical procedures were at the hospital helping with everybody when Miranda their 6year old collapsed and had some sort of seizure. They as of right now don't know what caused it or anything she sems to be ok now but they have taken her to Orlando Children's and they are doing tests. Needless to say it is an unbearably stressful time for them so if you can please please say a prayer for Miranda to be ok thank you .

***************UPDATE*****************
Well Miranda has right frontal lobe epilepsy. This is particularly jarring becuase that is the same section of brain where Lauren had her fatal stroke. They are coming home tomorrow and I hope to have more info then but this is just a hellish nightmare beyond words right now for the family so please keep them very much in your prayers thanks.

Hi,
Things are pretty quiet here. I changed the home page picture to Jordan getting ready for Silly Hat day at school today, he is nutty.

We are all doing ok even though we all have the sniffles or cold of one sort or another.

I do have a couple of prayer requests, you will remember Bethany the little girl from England who passed away last Feb, well this Sunday would have been Bethany's 5th birthday and her family is having a hard time missing her so very much so if you could say a prayer for her whole family that would be great thanks.

Also, Lauren's Mommmy Steph and sister Miranda are flying to Florida to help out Scot's parents (Lauren's Grandparents) who are having some health issues so a prayer of safe trip for them would be greatly appreciated.

Thanks as always for checking in ,and please don't forget to sign the guestbook to let us know you were here. I just printed out over 37 pages of messages and boy does Jordan get excited seeing how many people come to "visit" him.

Have a good week.

Hi,
We hope everyone had a great holiday weekend. We had a busy but fun one. We went to Jordan's Pop Pop and Mom Mom's on Christmas Eve Day , then to church and Jordan's Godparents' on Christmas Eve night. Then Christmas Day we had lots of fun convincing Jordan to open his presents. He wanted to play with each thing and not open the next ha ha, so it took awhile but we got everything opened and everyone of course had a ball. We had a nice dinner at home and watched some of Jordan's new movies Christmas night. Today we went to visit with Jordan's cousins from Tennessee. That was a lot of fun.
I hope you enjoy the pictures and have a good week.
xo

The pictures are in the link section

Well, the tree is up and looks great! The school play while fun was not Jordan's finest hour haha. He is so shy that it was a stressful for him to go up on stage and sing,but (with Mommy's help) he went up and we made it through two songs so what more can you ask for. It was a nice time and once he was off stage he was fine so it was all good.
We are now offically waiting for Christmas to come. We ae done shopping,wrapping, and decorating. We do have two more batches of cookies to make but that is fun so I don't count it as one of my "things to do " haha.

We hope that everyone has a great,healthy,fun and safe holiday season and to all the families of the Angels we hope that you can find some comfrot and peace this holiday season and that the New Year is one filled with happy times.

Thanks so much to everyone who visits and leaves us messages Jordan loves hearing me read them to him .

Happy Holidays!!!

***UPDATE*********
Today is Dec 23, it is 3 months today that we lost Lauren Faith,it is a sad sad anniversary and we ask all of you who are reading this to pray for the Millers during this Holiday season that has been clouded with such deep grief. Thank you .

Just wanted to quickly say thank you to everyone who lit a candle in memory of our prcious Angels last night. I know the families appreciate it very much.

All is quiet here. Jordan is in school today practicing for their Christmas show next week. I can't wait to see what 15 2-4 yr olds come up with haha.
Hope eveyone has a great week, we are going to put up our tree and make some cookies should be fun.

HI,
Both Lauren and Avery's families are particiapting in
The Worldwide Candle Lighting® this Sunday the 11th and we ask that all of you who visit here please join us in remembering our special angels that have been lost.This year has seen far too many children taken far too soon. Xavier,Bethy,Jerra,Austin,Olivia,Avery and of course Lauren are just some of the precious souls who are sorely missed that have come into our lives this past year.

Here is the offical info from the group their website is at the bottom thanks.

In loving memory of all children who are no longer with us, The Compassionate Friends extends an invitation for you, your family, and friends to join tens of thousands of persons around the globe for the ninth annual Worldwide Candle Lighting.

On Sunday, December 11, 2005, hundreds of community candle lighting ceremonies will be held in parks, churches, and other public places by TCF chapters, allied organizations, and other compassionate groups. Thousands more will be held informally in homes. The Compassionate Friends Worldwide Candle Lighting is held every year on the second Sunday in December at 7 p.m. local time for one hour in each time zone around the globe—a 24-hour remembrance of all children who have died.

A “Remembrance Book” will be available from The Compassionate Friends website home page, Sunday, December 11, 2005 for all who wish to leave a message in memory of the children gone too soon. Please make plans to post a message that day.

We do this . . . that their light may always shine!

www.compassionatefriends.org

HI,
Both Lauren and Avery's families are particiapting in
The Worldwide Candle Lighting® this Sunday the 11th and we ask that all of you who visit here please join us in remembering our special angels that have been lost.This year has seen far too many children taken far too soon. Xavier,Bethy,Jerra,Avery and of course Lauren are just some of the precious souls who are sorely missed that have come into our lives.

Here is the offical info from the group their website is at the bottom thanks.

In loving memory of all children who are no longer with us, The Compassionate Friends extends an invitation for you, your family, and friends to join tens of thousands of persons around the globe for the ninth annual Worldwide Candle Lighting.

On Sunday, December 11, 2005, hundreds of community candle lighting ceremonies will be held in parks, churches, and other public places by TCF chapters, allied organizations, and other compassionate groups. Thousands more will be held informally in homes. The Compassionate Friends Worldwide Candle Lighting is held every year on the second Sunday in December at 7 p.m. local time for one hour in each time zone around the globe—a 24-hour remembrance of all children who have died.

A “Remembrance Book” will be available from The Compassionate Friends website home page, Sunday, December 11, 2005 for all who wish to leave a message in memory of the children gone too soon. Please make plans to post a message that day.

We do this . . . that their light may always shine!

www.compassionatefriends.org

Hi,
Not too much new here. Jordan has a cold with some nasty chest congestion which of course worries us but so far so good. He has the weekend to clear up or he is getting doctor appointment , fingers crossed:)
I mainly wanted to update to put this new collage on of Angel Lauren and her "Issy" ( sister) from Christmases past.
I got a chance to talk to Lauren's Mom today and I miss her so much and it breaks my heart what she is dealing with in addition to the loss of Lauren, (some VERY insensitive people in her life) so I wanted so send her some good vibes by putting this group of darling photos for everyone to see.
I hope that everyone who visits us and keeps track of our story could please say a prayer for the Millers as they could use all of them they can get and to please NEVER take for granted anything you are given, not a single day.Life is so precious and the love we give and get is all that really matters.
Anyway, here is the picture I hope you enjoy seeing it as much as I do.

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Hi,
We hope everyone had a great Thanksgiving. W have so much to be thankful for and we had a very nice day at home. Jordan made us the centerpiece for out table with leaves we collected in Rhode Island and decided he was going to call his PopPop and wish them a Happy Thanksgiving all by himself , whcih was very sweet.
The food was all good (if I do say so myself haha) and it was really a nice time.

Bob and I talked about how thankful we really are for everything and everyone we have in our lives.This year has been good to us health wise, but we have watched a lot of families suffer like the English family, the Gibson's and the Livioti's and of course the Millers losing Lauren was very hard on us, of course it has been unbearbly hard on the Millers and we hate knowing people we love are suffering, which makes it really that much harder.
We are praying that this year is a better one for all our friends and family and that no one else is lost to CHD. I know that is a tall order but hey we can hope right??

Other news, today we made that famous trip to IKEA haha. It was great and we got alot of stuff for Jordan's new room, so now we just need to work up the energy to actually START redecorating haha.Jordan has decided we will try potty training again once the romo is all done ( I am thinking after the first of the year) since it didn't realyl seem like he was ready when we tried last week. he gave it a good shot but I think a few more weeks will do him good to wait. No rush.

We are looking forward to the holiday season, although it is a tough time in some ways it is made so much more joyful by our own little miracle that wetry very hard to take every moment for as much as it can be and never take anything for granted.
I put the link to the Thanksgiving photos in the links section down the bottom. You will notice on the captions then when writing his list to Santa with Bob Jordan decided he would put "baby sister" on the list. UM how about a fire truck instead hahaha.

Hope everyone had a great holiday and has a great weekend.
Thanks as always for stopping by and please sign the guestbook it is almost time to print them out again :)

hi,
We have been kinda busy lately. Jordan got to see chicken Little in the moivies with Mommy and Daddy last week and he loved it :)
I have been having a lot of pain in my foot and finally made it to the doctor and found out I have a heel spur ouch. At least I know what it is now so hopefully the treatment will work fast :)
Jordan had his follow up appt with GI today and he has been released from their care and given the green light to potty train hooray!!! After 2 years of the poor baby being so constipated and in so much pain ,the medicine he takes now has been a blessing and he is doing so good the GI doc says we can just follow up with our regular pediatrician if anything pops up of course she will see him but for now we are down to just the regular doctor and the cardiolgist hip hip hooray for that one!!!.

SO now we have the great task of potty training. We are not going to pressure him and if he isn't ready we will hold off awhile but the best part of it is we get to make his room into a 'bigboy' room so he will be able to get out of bed to use the potty if he has tooetc. Jordan has picked a knights and castle theme room so can't wait for that. I am sure there will be pictures as soon as we get it done. Hopefully this weekend we can work on it and make a trip to IKEA haha.

We are getting Christmas pictures taken Friday too so cross your fingers for a good result so I have some good photos to post here for the holidays ;)

Well, I think that is about it for now, we are getting ready for Thanksgiving and we have SO MUCH to be thankful for really. I also would like to ask for some extra prayers for Angels Lauren and Avery's family .This time of year has got to be so much harder having so recently lost their precious children, we keep both families in our hearts and think of them often and thank you for doing so too.

here is Jordan in his new knight helmet he got-loves it as you can tell :)
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A perfect fall picture of Lauren and her sister Miranda. It breaks my heart and makes it soar with joy at the same time, I hope you enjoy it..........

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Here is the link to our halloween photos, you will have to cut and paste since I am out of "links" at the bottom :) . I hope you all had a great Halloween.

http://pg.photos.yahoo.com/ph/drpthy1/album?.dir=/6975&.src=ph

Hi,
Well we had a great trip to Rhode Island. Serena and her brother and sister (Micheal and Natalie) are all so sweet and cute, it was a lot of fun. It is of course nice to be home as Jordan missed his Daddy very much (me too shhhh)
we hope you all had a great weekend and have fun trick or treating tomorrow.

Precious Angel Lauren and her Mommy
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This new picture is a collage Bob made of Jordan's Halloweens so far.I thought it was cute and wanted to share it.Hope everyone has a good weekend.We are going to Rhode Island to meet our friends from the heart board and we are hoping to have a million picutres when we get back so check next week for a new album :)

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Precious Angel Lauren and Her Mommy
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Hippo Boy

Not much going on except I added new photos in the link section and the Halloween shots are of Jordan in his costume. He is going to be a hippo since his Daddy loves hippos so much it stands to reason Daddy's little buddy wants to be one too :)
We hope you enjoy the pictures, thanks as always for stopping by.

Precious Angel Friend Lauren

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Mommy's New 'Jordanfly' shoulder tattoo
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Well hooray for the cardiolgist visit!!Everything went really well today. Jordan's oxygen levels are at 90-91 which is acceptable, the "hole" in his heart they put in during his last surgery is fine and can be left alone and all his other tests look good. WHEW!!!
We do have to do a holter monitor test for 24 hours because of the fever and irratic heart rate thing he had a little while back, but we aren't expecting anything to come of it (we hope)
So thanks for the prayers we really were worried becuase a lot of our heart friends have been getting bad news lately and the tragedy of losing Lauren and Avery so recently really had us nervous but we say a prayer of Thanksgiving that all is well for us right now. Also Jordan was so good today he didn't cry or fuss at all which is so not like him in the doctor's so I was grateful for that too!!
We go back in 6 months as long as nothing shows up on the holter monitor test, which we won't know for about 10 days so say a little prayer for that.
That is about all right now.
Thanks as always for stopping by.
*************UPDATE*****************
The cardiologist called today and Jordan only had one extra beat in the 24 hrs of holter testing so he said that was fine and we are good for 6 months hooray. I do think that more holters will be in our future but that is ok I would rather them keep track of things as it is evidently pretty common to develop rhthym issues after the fontan ( the last surgery Jordan had)
Thanks for all the prayers.

Lauren Miller 5/9/02-9/23/05

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Today is Lauren's funeral and I sent some of this message to the family and although I can't be there I just keep thinking about the day Jordan and I got to spend with the Miller family. I think of the sound of Lauren's laugh and her beautiful smile. I love the memories I have of her and 'sissy' Miranda walking hand in hand.I love the thought of her playing .I remember thinking even then what a loving family they were and how special. I am heartbroken for Lauren's family becuase it was obvious how much this little girl means to all of them, and for everyone who knew her. Lauren has done more in her short 3 and a half year than many adults do in a lifetime. She has amassed a huge number of people whose lives she touched in a positive way, and those lives will be changed forever.I hope Steph,Scot, Miranda and both of the entire families can find some peace in the fact that Lauren is no longer
struggling and is no longer in pain, although I know the struggle and pain for them will go on forever. Lauren you are a most special Angel now and I know you will watch over all those who love you and give them your precious light always.Rest in Peace sweetheart.

HI,
Thanks for all the prayers. Bob's eye surgery went well, he is a little "seasick" and his eye is pretty sore , but so far so good. We go back to the dr tomorrow for a follow up and further instructions. Lauren had a CT scan today that showed the bleeding on her brain has stopped:) so the plan now is to wean her off the sedation and go from there. Fingers crossed for good things.
Thanks again.

p.s. Jordan loves Bob's protective glasses as you can see;)
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HI,
Thanks for all the prayers. Bob's eye surgery went well, he is a little "seasick" and his eye is pretty sore , but so far so good. We go back to the dr tomorrow for a follow up and further instructions. LAuren had a CT scan todya that showed the bleeding on her brainhas stopped so the plan now is to wean her of the sedation and go from there. Figners crossed for good things.
Thanks again.

p.s. Jordan loves Bob's protective glasses as you can see;)
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HI,
Just wanted to let you all know I am home. The trip itself was fine no traffic or bad weather. It was quite a different story at the hospital to say the least.Lauren is still hanging in in there. It has become apparent that Steph and Scot will have to make some very tough decsions very soon and I was thankful to be there to help talk them through some of their concerns. I am grateful to Bob for helping me with Jordan and reading me my emails over the phone while I drove etc ha ha. Bob of course is having eye surgery tomorrow so if you could spare a prayer we would appreciate it.
Thanks for all the prayers for Avery and her family. If you want to leave a message for the family of Heaven's newest precious little angel it is a caringbridge page /ny/averysheart
We also send prayers to those affected by Spet 11th today as the 4th anniversary is upon us-can't belive it has been that long-

HI,
Lauren is still the same ,her brain continues to bleed and swelling is still present. They are just "waiting and seeing" now......The bad news is Avery won her battle with CHD today and is now an angel. She took her last breath at 11:06 this morning. While we are glad she is no longer suffering,the suffering of her family is just beggining so please keep all of her friends and family in your prayers.

Well I got here safely thank the Lord. Things are not good. Lauren has had a massive stroke and she is still bleeding in her brain. They can't get it to stop and there is fluid and lots of swelling as well. There are also multiple issues around her lungs,liver and infections. The strongest organ right now seems to be her heart of all things!!
The family is holding up fairly well, right now I think is one of the hardest parts being patient waiting for the "next thing". They are going to keep hope up and keep doing testing on her brain to see if the swelling comes down. The brain seems to be their primary focus right now. I am going back in a little while and I will of course update if anything happens. Thanks for all the prayers.

Just letting you all know I am getting ready to go to OH. I am going to be leaving as soon as I pack and get a few hours of sleep (yeah right)and should be there by mid morning tomorrow.
Just wanted you to know I will be gone for few days. I will be taking Bob's laptop if I get a chance I will try to update.

I just got an update from Lauren's family. She had a brain scan to see the extent of damage from the stroke and it is extensive. The doctors are giving her a 1percent chance to live. This 1s all we can hold onto.We are praying hard for a miracle.

As if this wasn't bad enough they are fairly certain Avery is in organ rejection and undergoing testing to see for sure. It has been a devastating day for our friends and very hard to see these families go through these horrific times with their children.Devastating doesn't even come close......
Thanks as always for being there.

Today has been a good day.....Avery got her heart and the operation was a success. The heart is beating and Avery is heading to her room. She stil has a long way to go to recover fully and is having some complications so it won't be easy but she has been given a new chacne to fight another day.
Lauren is also doing a litle better her lungs are no longer collasped and she is breathing with only the help of nasal oxygen so this is a good step towards her healing as well. She also has "woken up" a bit today so Praise the Lord for that as well.
I am hoping both girls have peaceful nights.
Thanks as always for being there for them and us......

**********************UPDATE******8
As usual can you say roller coaster?? Avery seems to be in rejection and LAuren is having trouble breathing again........It is all too much- these babies have fought so hard for so long . It makes me really sad. Thanks for all the prayers and we are hoping today is better for both of our friends.

Avery has found a heart!!! She is on her way now to the hospital for surgery. Please pray for the donor family who gave this wonderful gift and for Avery to do well both in the surgery and after.
I haven't gotten word from Lauren today but last night she was taking a turn for the worse and both of her lungs are now collapsed. She is not on the vent again yet but that is the next step I cannot even imagine the emotions the Millers are going through please say an extra prayer for them.......Thanks

Well as has been the case these past months, up again down again .Lauren is having another rough time. She has eveloped lung secretions and is one step away from going back on the vetnilator......Avery did get good news today that her heart and lungs are tolerating hte ECMO well and she is stable. We are thankful for this and praying continuously for both Lauren and Avery . This has been a very hard time for all of them (and those of us who care for them) thank you all for your concern and prayers.....

Yay.Finally some good news. Here's hoping it lasts. Lauren did real well coming off the vent and her Mom and Dad couldn't be happier (well if she was home they would be but you know what i mean)She is resting now and doing well so far, the first 24 hrs are the toughest and she has a long way yet to go to be able to be released but we will take what we can get.
Thanks for the prayers they are working :)

Dorothy
ps. I haven't gotten an update on Avery today but as of early this morning she was not doing well at all and has been moved up to the top of the waiting list for her heart because she needs one very soon........we are praying........
******UPDATE******
Avery is stable thank God and her tests today showed some encouraging sings. She is still a very sick little girl and we need to keep praying for her miracle to come through...thanks.

Hi,
Sorry I haven't had an update but both girls have been pretty much the same, up and down but nothing drastic. Tomorrow however is going to be a very big day. Lauren is up for coming off the ventilator, the doctors think it is very important she get off quickly so she doesn't get dependent on it.She has been on it almost a week and her airway is becoming compromised. She has been having crazy heart rates and blood pressure issues today also during the trials of lowering the vent settings so they are letting her rest but she needs to come off if she can. Please pray for her continued strength.
Avery is also very much in our thoughts she is at a point where no medicine really can help her and while they are doing the best they can she really needs a new heart if she is to survive much longer. The family and doctors were meeting today to decide when and what hospital she is going to go to for the transplant, I will keep you updated on that.
Thanks so much as always for all the prayers.I know I have said it before but it really has been a rough summer for our heart family. Hopefully this new month and new season will bring better times to those we care about.
*****UPDATE*********
Avery has been relisted at the most critical level on the donor list. She is 100n the ventilator now and sedated fully . Her heart is losing function and swelling so the vent should help her rest.Avery really needs our prayers.
Thanks.

Good News/Bad news..first the bad news .Austin passed away this afernoon. I know he has been suffering horribly but it is still devastating I am sure to his loved ones and we will keep them all in prayer.
The good news is Lauren has stablized a little and the fluid is starting to come off slowly. Her big sister had her first day of kindegarten and it was a great day. Mom and Dad were with her off and on the bus and she seemed to enjoy herself. In drawing time she drew a picture of Lauren in her hospital bed, makes me tear up just thinking about how sweet she is.....
Avery is also stable at last update. The tests showed her aorta is narrowing but the shunt seems to be working so we will thank God for any good news and hope things hang together until a donor can be found. It is so hard to wish for another family to have a loss but at the same time, the unbearable pain of one family will be the unending joy of another...it is a sad state no matter what. I pray for research to come to a point where someday no babies ever have to suffer and die from these horrible conditions someday .............
Well I thank you as always for all the support for us and our friends. I will update agian when I have news. Jordan has a cardiolgist appt coming up next Thursday so if you can sneak a prayer or two in for us I would appreciate it :)

p.s,. check out our new August 2005 pictures if you haven't seen them :)

Avery is not doing so well . The doctors think her shunt is not functioning properly. This is probably due to the fact that she is really at a time when she would normally have her second heart surgery , but she is not strong enough and that is why she is on the transplant list. So please keep them in your prayers as she goes through testing today to see what is going on .
I haven't had a Lauren update today , today is Miranda's(Lauren's sister)first day of kindegarten so Scot and Steph are with her. It makes me so sad that Lauren has to miss it, it is just so unfair to both girls and Scot and Steph too.
As usual thanks for the prayers for our friends we really apprecaite it.
I also added our August photo link to the links at the bottom of the page, we have had a very busy month as you will see :)

Have a great week.

If everyone who reads this can please stop and pray for Lauren we would really appreciate it.She is having much trouble and has stopped breathing several times today and had to be revived.She is not doing well at all. The poor baby is in a lot of pain and can't have medicine becuase it is one of the reasons her her breathing has stopped. Her dad said he would keep us posted, I will pass them along. Thanks for all the love and support.

*******************UPDATE
She just called me briefly to say that Lauren has been intubated they had no choice. Her lung is full of fluid she is on lasix continually and is in really bad shape. It is so unfair I cannot express to you how sad Steph sounded. Lauren's pain is being managed a little better now and she is breathing above the vent so that is good and her heart looks ok so far so that is also good.. They have no idea why this has happened and it is gut wrenching to hear the voice of a mother having to watch her child suffer so badly and for so long.
She asked me to let everyone know that they appreciate everything and that she is sorry they won't get a chance to update the page tonight but things are crazy and they have most of the family there with them.
Miranda is holding up ok, she doesn't know about today's developments but they will probably have to let her come to the hospital tomorrow. Monday Miranda is to start Kindergarten and Steph is broken up about leaving Lauren but will be seeing Miranda off and she needs to be there for Miranda as well.
As you can tell it is in Steph words "A Living Nightmare".

On a personal note Jordan came over to me and asked why I was crying and I told him because Lauren was very sick and he said Oh Mommy and gave me a big hug.Then he said I am really sorry for Lauren I will go up to the sky and ask God to make Lauren better. Can you say waterworks????
Thanks for the prayers and if I hear anything else I will let everyone know.

Thank God! Lauren is doing great, the surgery fell under "best case scenario" and she is resting comfortably. They were able to open her stomach blockage with no problems and there was no other infections detected in her liver or heart as had been suspected . The tissue was not a pre cancerous mass as they thought just some "cell clumping"or some other such benign cause,they are not really sure as Lauren has some chromosome issues it is hard to tell what goes on with her but we will take it!
This is great news, and such a relief thank you all so much for the prayers. She of course has a long way to go with rehab she has been very sick and not eating for such a long time but the prognosis seems very good FINALLY!!

Also Avery was officially placed on the heart transplant list today so she also still needs lots of prayers.

Thanks so much as always, and I will keep you all posted as to major developments

Tomorrow is going to be a big day. Fri,day Lauren will have her risky exploratory surgery to try to determine her troubles and Avery will finish the evaluation to see if she can be put on the heart transplant waiting list.
Both of these families are dear to us and if you can spare any prayers please say them both for the Millers and Liviotis .
Thanks and I will update as news comes in Friday.

Well Avery is not getting any better. The plan is to put her on the heart transplant path. This is of course a very scary,risky thing and the family needs many prayers. It is awful to think of what has to happen in order for Avery to get the heart she needs but if a family is going to have a loss, maybe that loss can help save another child is how we have to look at it.
Lauren had her GI test yesterday and her stomach is still blocked and she will need surgery still. After the latest infection and everything there is no date set yet but I will update when we have one. Right now we are just praying for nothiggn else to go wrong so that she can have the risky surgery and get on with healing.
Thanks so much.
We are all doing fine here and appreciate the prayers.

I can't believe I am writing this but our dear little friend Avery is in desperate need of prayer. She is basically in heart failure at this point. It has come on rather suddenly as her heart function had been good since her last surgery but there are a bunch of things combining right now that are putting her in a position where she may have to have a transplant. Needless to say this is a horrible turn of events and we are wishing Scott,Shannon and Avery all the best . Thanks in advance for your prayers.

Hi,
No new word on Austin thank you to all who have been praying.
Lauren got news that her CT scan of the liver shows no damage so that is good. The fever however is still hanging on so everything else with her is in limbo until that is gone.
Thank you so much for all the prayers. I will update when I have more news.

Another not great day for our heart friends...Austin has been given a dire prognosis at this point. I believe he had his "final blessings" tonight and they do not expect him to live but for a miracle. Please pray for that miracle.

Lauren is not getting any good news either. Her feeding line is infected and had to come out, this means she has to live on nothing but IV fluids running into her foot (the only good vein she has left)for a few days while they try to find an antibiotic she isn't allergic too that is strong enough to fight the infection. Needless to say her surgery has been postponed indefinitely until this infection settles down. This is not good news either since the exact nature (cancerous or not) of the mass is still unknown and the longer it goes being left in her the worse it can be if it is malignant. This has been a crushing day for the family and they are wearing down mentally please if you can pray for Steph and Scot to continue to find the strength they need and for Lauren to get the healing she needs.
Thank you so much as always.

Well, the roller coaster continues. Lauren has been readmitted to the hospital with a very high fever and elevated white blood cell count........That is all I know right now please pray for them this is not what they needed right now.
Also Austin the little boy who we thought was getting better is evidently having blood clot issues in his brain and becuase of a genetic conditon can't take coumadin so there is some serious issues with him right now.
Please pray for him and his family too.

The good news is Avery is home and doing well so THANK GOD for that!!

I will update later with news on Lauren as I get it. Thank you all so much for your concern and prayers for our friends.The Miller family means alot to us and that Lauren is having to go through all this is breaking our hearts too :(

Ok well the GREAT news is a little boy we have been following named Austin who was grave and in a comatose sate WOKE UP TODAY!!Praise God. It really is a miracle this poor baby has been through so much.

Lauren got word that her stomach surgery will be Monday 8/22. We need everyone who checks this page to please PLEASE pray for a good outcome this child is the sweetest most darling girl and SO deserves a break thanks.

Jordan is doing great and we Thank God daily for this. We are going to see Thomas the Train this weekend (look for pictures soon )

Thanks again for all the care and concern.

Well it is not great news for Lauren. She has to have another surgery to try to fix the problem with her stomach. The "blockage" as they are still calling it has actually gotten bigger in the past ten days , not a good sign. They are saying it is hopefully some sort of weird allergic reaction which Lauren is prone to becuase of her chromosme issues. The other option is that it is a tumor. This is not what we were hoping to hear, and if it is then of course we hope it is not cancerous. The surgery looks like it will be Thursday as they need a few days to prepare Lauren. It will be very risky surgery becuase she is on high doeses of blood thinners, so there is the risk of that, plus the risk of infection is big and after all the infections she has fought recently it would be devastating to her little body to have another one.
If this wasn't enough her Dad had to go back to work and will be away for the surgery.As you can imagine it is a blow to them all but the company has been so good giving him time off he went back and happens to be travelling for a little bit now.
I am so sad for my friend ,please keep Steph, Scot Miranda Lauren and the whole Miller family in your prayers they so need it right now thanks.

p.s. Avery is doing better but still in the hospital , so at least THAT is good news, but still keep Avery in your prayers as well.Thanks.........

HI,
This update is full of sad news. A HLHS girl named Jerra we had been follwoing died last night. It was a shock becuase even though she had been very sick for someitme now, she had begun to do better recently.It is a horrible time for her family obviously, please keep them in your prayers.
Also our little friend Avery has been readmitted to the hospital for dehydration and heart rhthym issues (much like Jordan a few weeks back) from a virus. We are praying she can come home very soon.
Also, this week Lauren will be going back to the hospital to see about the blockage in her stomach/intestine. We are praying ,praying ,praying that it is not cancer.

Thanks as always for all the thoughts and prayers.

Hi,
Avery is still doing great and we are so thankful for that! Zach is home and while he is doing ok health wise, he is having a bit of trouble readjusting to being home. He is having some sleep issues and is very wary of anyone coming in the house. Plus his Mom thinks he is getting some new teeth so that never helps....It is very common for kids to have these issues after heart surgery (or any surgery really) so we are all hopeful Zach will get back to himself soon.
Lauren is still basically he same, she goes on Monday for tests to see about her stomach issue and hopefuly they will find out soon what the mass is that is blocking her stomach from her intestines. We are still praying very hard for her as she is having some difficulty too with not being able to eat or drink and her family has to "sneak" meals so she doesn't get too upset. It is very sad and we hope one day soon she will be able to take things by mouth again.

We also have a new request if you could pray for alittle boy named Austin,he is the Godson of a Mother on our CHD network and he is doing very very badly right now with several issues so he could use some healing thoughts.

We are doing well, we went to Eagles training camp yesterday and that was fun. We are getting ready now to go down the shore for a couple of days and we will be back Friday. So hope you have a great week, thanks as always for checking in and for all the prayers and support.

YAY!!
All three of our little friends are home now. Avery and Zach are both doing really well from their open heart surgeries and have been settling in at home very nicely.
We are so thankful.

Lauren is also home again, and while she is still on IV feedings and medicine she is happy to be home. Her stomach is still not working and the opening where it connects to the small intestine is blocked. The tests she had showed the swelling but not the cause? Her doctor says in the 20 plus years he has been doing this stuff he has neve seen a case like Lauren's! So, they are going on the assumption it is an ulcer causing the problem and put her on acid reducers for 10 days then she will have to have exploratory surgery to open up the spot. The doctors have told the family there is a 60-70% chance it is just a benign ulcer, but the other 30-40% is that it is cancer. This is NOT what they needed to hear to say the least. So please continue to pray for Lauren and her doctors to figure this thing out and that it is not cancer.
Thanks as always.

Hi,
I just wanted to update , Avery is home and doing really well Praise God!! I haven't heard form Zach's Mom in a day or two so I am hoping this means they are home and getting settled. Lauren had her test rsults yesterday and as always with Lauren it is something for the record books. The docs couldn't find the source of her stomach opening being swollem shut. They are thinking MAYBE an ulcer, maybe a tumor (God forbid) but they don't know for sure. So they are keeping her on IV feedings and IV meds for acid to try to see if that helps the swelling go down. Poor baby. Anyway Steph and the family are hoping to get her home and to be able to deal with the IV's with the help of home nursing. Thanks for all the paryers as always and thanks for checking in.

Hi,
Bob had his company picnic today and I wanted to share the photos. We had a good time and Jordan had lots of fun making us a "puppet show" with Bob's empty clam shells haha.Jordan also loved (as you could guess ) riding the cars and playing on the construction equipment style playground.

The updates are not in for today on the kids we have been praying for although at last word Zach and Avery should still be coming home very soon and Lauren needs to have surgery to remove the blockage from her stomach, so that is the latest. I will of course keep update posted as I get them. Thank you all for your continued support and interest in our friends and their families.

Hope you all had a good weekend.
xo

Avery and Zach have both had little setbacks, but both are doing overall very well and should be home by the start of next week. Hooray!
Lauren had her endoscopy to see about her stomach blockage and the dr could not get the blockage to move so she has to have another acutal surgery next week. It is very dissapointing and scary for her to have to have another surgery with all the trouble she has been having so please say a prayer for everything to work out.
Jordan seems fine today other than throwing a fit when I took him to school (tired maybe??) so I guess he is fine too.
Thanks for the prayers and for always checking in ......

Updates for the day.
Avery is doing great and may be sent home tomorrow!!!
Zach is doing ok but has an air pocket in one lung so he is going back to the NICU so please say an extra prayer for him
Lauren has her endoscopy tomorrow to see what is blocking her stomach, PLEASE pray for her that nothing bad is found, that she makes it through the surgery all right and that no more infections happen.
She is a little girl who needs some serious luck, prayers and love right now .

Also if you could add one more while we are praying :)
Jordan ha a little fever, we are hoping it is just the heat but you never know so fingers crossed on that one.
Thanks I will update agian after Lauren's news comes tomorrow.
xo

Ok well here are the updates from today. Avery is doing great, she is off the vent and eating and having a great recovey so far. Please Thank God for that.

Zach is having some pain issues and severe headaches are common after the surgery he had so please pray that he gets some relief from them.

Laren's tests results show that the part of her stomach that connects with the small intsestine is clogged, so the plan is to try to unclog it on Friday. Please pray she is stable enough to do it and that it works. She and the Miller family need no more adversity.

Thank you SO MUCH for all the prayers, they defintely work.

We are so grateful to be healthy and happy right now........

Ok great news Avery has had her chest closed hooray!

Zach is out of surgery and doing well
hooray hooray!!

I am still waiting for today's update on Lauren hopefully it will be 3 of a kind good news all around:)

Thanks for checking in and for the prayers they are working !!!!!

****UPDATE****Well so much for good news all around. Lauren's Mom updated and the news is not great for her. The tests showed that Lauren's stomach is not working at all. This is really bad obviuosly and she may have to endure another surgery which could lead ot more infection or be fed intravenously which would mean she would be hooked up to a machine 24 hrs a day. Either wya it sucks to be blunt. On top of this she has a blood clot in her jugular vein which may or may not be moving......
please pray that the doctor's will come up with some options for Lauren. She does so deserve it.
Thanks.

Just thought I would update on our friends. Avery did really well and is out of surgery and recoveirng as they expected.
Lauren is still in the hospital, they have found her stomach is not emptying again but are not sure why or what to do so the family is waiting to talk to a surgeon.

Zach wont be out of surgery until about 6 so please keep praying for him as well.

Please keep all our friends in your prayers.I will update again later after I hear from Zach's Mommy.

hi,
We are all doing wel.I have some very special prayer requests to make. Our little friend Avery is having heart surgery tomorrow. Zach a little boy from our HRHS group is having surgery on Tuesday as well. These babies have already been through soooo much so they could use an easy time of it. Also Lauren is still in the hospital and htey are having a hard time keeping even pedialyte down so please say an extra prayer for her.
Thanks.

On a good note Lauren's Grandfatehr seemed to have come through is OHS fine and we are thankful for that. Jordan and I also got to finally meet Lyn and Justin this week. These are friends that we have made on line and were among the very first we made when we got involoved in all this CHD stuff ;)
It was great to finally meet in person, no pictures , I know it is hard to believe but Jordan was unsure and I figured rather have no pictures than crying ones haha. We are planning to visit again soon so I will take pictures that time for sure :)
Thanks for checking in and for keeping all our friends in your prayers.

I need to ask for some urgent prayers. Lauren was rushed back to the hospital. She is throwing up nonstop and cannot keep any mes, nutrition or anything down. She is tube fed so this is a really serious concern. Also, without nutrition her chest wound and infection will not be able to heal.
AND if this wasn't enough for this poor family .Lauren's Grandfather (her Dad's dad) was taken in for open heart surgery today of his 4 arteries in the hear they are blocked 90% 95% 95% 99%this is such an n awful time for the Miller's as Scot Lauren's Dad) is in another hospital with his Dad and Steph is left by herself with Lauren and there is poor sister Miranda who doesn't know WHAT to do with her sister and her grandfather both being so ill......Thanks for the prayers I know you will say and I will let you know if I hear anything.

Hi,
Jordan and I decided to take a ride to Cherry Hill to the Discovery Musuem to escape the heat for awhile today. As usual I took 3 million pictures so I figured I would share if you would like to see them the link is below. We had a lot of fun and are looking forward to going again soon.
Dorothy

Thanks again for all the prayers for Lauren. I haven't gotten an update today but last I heard she was home and they were hoping for the ebst recovery. Also her Dad's dad is very ill so we are praying for him as well. Thanks

Hi,
Today Aunt Edie and Jessie took Jordan and I to the NJ Aquarium. We had a lot of fun. The place is great we hadn't been since they renovated. It is so clean and BIG! The hippos of course were a favorite, although the pictures didn't come out very well of them because of their thick tank walls :(
Jordan (big surprise) found a truck in the gift shop as his souvenir :) While we were seeing things, we saw a giant lobster claw they had on display and Jordan said "Mommy I need Butter For That" he is so silly!
The shark exhibit was really great too, you walk through this "shark tunnel" and the sharks are swimming like 6 inches from you it is really neat!
So there was so much to see and of course take pictures of, so naturally I had to share. Hope you all have a great weekend.I hope you enjoy the pictures

HOORAY!Lauren is home! Lauren is still very sick and she is still a long way from healed but now she can hopefully get some rest and be in her own bed. Thank you so much for the prayers. Also Lauren's grandfather was taken to the hospital for waht they think may be congestive heart failure so we are praying for him as well. Thanks.

The link for the aquarium photos is at the bottom of the page

Well, things are getting better with Lauren Thank God. She is still not out of the woods by far so please keep praying but things are looking up.
We are all fine, hot but fine. We have been enjoying Vacation Bible School, going to the library, the mall anywhere it is air conditoned haha.
Tomorrow we are going to the NJ aquarium with Aunt Jessie and Aunt Edie so look for pictures soon :)
Thanks for checking in .
Have a great rest of the week.

Hi,
I added pictures of Jordan playing with his new pool in the links section. Also, Lauren has taken a step or two backwards, so please keep her in your prayers.She has been in the hospital a month this week so it has been very, very hard on everyone. Thanks.
I hope you all had a good weekend, and thanks as always for checking in and for the prayers.

Good news, Lauren is doing a little better. Thank you so much for all the prayers. We are hoping that all continues to go well for her and she can continue to get better,she is still very sick and needs lots of prayers but I just wanted to let you all now that today was a good day :)
Thanks.

I need to ask for urgent prayers for our friend Lauren. Her stomach is not working for some reason, the dr's cannot figure why. She has a feeding tube but it is not staying where it needs to stay and she needs nutrition desperately to heal from her heart surgery and all the reactions she has been having to the antibiotics. It is looking very grim for her as she has other chromosome issues as well as her heart to deal with and the doctor actually told her parents (Stephanie and Scot) to "hope for the best but prepeare for the worst". I cannot imagine how awful this is to be told and am asking everyone to please please pray for Lauren and her family. I will keep you posted thanks.

Wanted to wish you all a Happy 4th of July!! We will be having a quiet one at home. We hope you are all safe and have a good time.
Lauren still needs your prayers,thanks.

Jordan is doing much better. He went to school today. We wanted to thank you all for the prayers and well wishes. I guess it was just a "36 hour virus" like they said....always something. It is so scary with heart kids, you never know what will be next.

Speaking of which , please keep Lauren in your prayers she is still having quite a rough time of things. Her picture is still in the photo album.
Thanks as always.
Happy 4th of July!!!

****UPDATE******
I just found out our cousins in TN were in a very bad car accident last night. Everyone is fine but shaken up quite a bit ,so please keep them all in your prayers too . Thank you

Hi,
Sorry I haven't updated but I have found the time now so I figured I would hop on quick. He is doing much better but still a little out of sorts and not 100%. The good news is he has asked for food several times today and actually eaten a little of it but not what we would hope. His blood cultures haven't come back with anything either so that is good. He is still very tired and not playing like he usually does, but we feel he is on the mend. Bob and I both thank you for all the prayers, it was scary not knowing if something was wrong with Jordan,and any infection he gets can be very serious very quickly so we always have to be "on guard" against that stuff. Well, I am going to go try to get some dinner in Jordan (maybe Bob and me too ) and try to make it an early night. Thank you all so much we are blessed with such a wonderful circle of friends and family :)

Also our friend Lauren is in need of serious prayers. She had her fontan recentyyl and is having troubles with an infection and the antibiotics they have her on she had a reaction too and they are trying to balance the anitbiotc needs vs her reactions and it is a struggle. It is so hard right now her poor little body is being ravaged by all the tests, and tubes, etc.Please say a prayer for Lauren and the entire Miller family. I put the picture of her and Jordan at a recent visit in the photo album.
Thanks.

Hi,
I had to update becuase Bob and I took Jordan to the ER last night......He spiked a high temp and had an irregular heartbeat for a time. He is much better now and the doctor thinks it is a virus. The temp has come down quite a bit and he is acting much better today. The other tests they did all seem fine we are just waiting for blood cultures ot grow, we should know if htey are positive by Fri or so. Fingers crossed.
His birhday pictures are still in the "links" section at the bottom and if you missed the birthday party update it is in "journal history"
Thanks for stopping by.
I will update again if we hear anything new.

Hi,
Hope everyone had a great weekend. We had Jordan's party Sunday . Boy it was HOT!!! But we made it through ok the house was pretty cool so no biggie but it would have been nicer if we could have spent more time outside. Of course the kids played outside, they didn't care. Jordan has done very well with the heat his summer so fingers crossed it won't bother him.
The party was a big success, we had lots of family and friends over (about 25 in all) and Jordan of course got spoiled. It was a 'Teddy Bear Picnic' so he had a Teddy Bear Cake. He got lots of great gifts and spent all night playing with them. This morning as we got ready for school he was telling me which toys and movies he was gonna play with as soon as he got home. Too funny my little man.
So OF COURSE there are pictures.
Hope you like them.

On a prayer request note, could you please keep our friend Lauren in your prayers she just had her Fontan (the surgery Jordan had in April 04) and is having a bit of a rough time. Thanks.

ok here is the link.

http://pg.photos.yahoo.com/ph/drpthy1/album?.dir=/8e9e

Well today is the big day! Jordan is 3!!!I cannot believe it has been three years since he has joined our life. I feel like he has always been a part of me and can't imagine life without him. Jordan has been through so much in his short life and he is still the happiest, most wonderful little boy in the world. His Daddy and I love him so much and everyday is a fresh new joy with him. Thank you all so much for the support and love over these past 3 years and I hope that the freinds we have made along the way will be our friends forever!
I am putting Jordan's birthday portrait on the homepage, I know I wished he would have smiled but hey what can you do haha.His birthday party is Sunday so I am sure there will be many photos from that to share as well. havea great day and thank you again for caring about Jordan .

Hi,
Hope everyone had a great weekend.We sure did. Jordan had a blast at Matt's graduation Fri night, then had a birthday party which he totally loved and then spent Sat evening and Sunday playing with his Daddy and in his sand box (see photo).
It was a great weather weekend and we are all so happy to have been together to celebrate the Father's Day holiday. Jordan gave his Daddy a book for his quarter collection and made him (ok helped Mommy make) brownies (Daddy's favorite!)

The next big thing will be Jordan's third birthday which is Tuesday . I cannot belive it has been 3 years already where does the time go???
Hope everyone enjoyed their weekend. I will be back for an update Tuesday for sure :)

Image hosted by Photobucket.com

Well Matt Did it !!!It was a great weather night and the graduation ceremony was very nice. Jordan got a little rammy but as we were there for over 2 hrs who could blame him :)We are all so proud of Matt and I wanted to post the photo I took of him and Jordan right before the graduation.

We are looking forward to a busy weekend. Jordan has a birthday party tomorrow and we have Father's Day plans Sunday for Jordan's Daddy and mine too :)
Have a great weekend!
Image hosted by Photobucket.com

Hi,
Jordan and I got back from our trip to TN last night. We had a great time and wished it could have been longer. Grace is the most darling baby and Jordan LOVED holding her and feeding her and giving her kisses( me too). Aunt Eileen made Jordan a birthday cake and we blew out the candles.Nate took Jordan for rides in his truck and the boys played inside and out very well together. Nate is doing so well with potty training such a big boy, now Jordan is asking to get a potty like his cousin so we will have to see maybe he is ready too.......We swam in the pool at the hotel and even got to stop at Bristol Motor Speedway (a NASCAR track) on the way home and Jordan about flipped his lid there. We had to get back though as Matt is graduating high school this Friday so we couldn't miss that :)
I took about a million pictures (shocking I know) so I am doing them a little different. Just hit the link below and it will take you to my photos. There is a button above the fourth picture in the top row if you want to see all the pictures in a "slideshow" you can also hit indivual pictures too.Please let me know if you have any trouble. There are two new pix in the album and the home page photo is him at the motel pool.

I hope everyone is enjoying this weather, crossing our fingers for some cooler air soon though.

Have a great rest of the week and weekend and I hope you like the pictures.
XO
Dorothy

Hi,
Just wanted to share some pictures from today. Jordan, Bob and I went to Terry & John's for dinner and Jordan got to visit his little buddy Jason . Jason (and Terry)are doing well, and Jason has started crawling (like a speedster) and has 10 teeth! He is such a cutie pie :)

Then Jordan's 'PopPop' came over later and we had fun playing outside.

Hope everyone enjoyed the weather this weekend,and stays cool in the mini heat wave we are supposed to have this week.

Jordan and I are leaving for Tennessee on Fri afternoon so wish us luck on the trip, and I am certain there will be more pictures to share when we get back of all our adventures.
Have a great week.
Dorothy

HI,
Not a whole lot to report. We had a nice weekend and stayed mostly at home , watching movies, playing outside and enjoying the relaxing time. Jordan got to go to school today insteasd of yesterday because of the holiday so he gets to play with new kids that he doesn't see on his "regular" days so that will be nice for him. I am running around trying to get errands done without a 3 yr old in tow which is nice :) Well, as nice as errands can get ;)
I hope you all had a great weekend. Ten days until we leave for TN yay!

Good news. Avery is fine.Thank God and thank you all for your prayers.
We are still doing fine, looking forward to a nice long weekend, Daddy has off 3 whole days!!! Can't wait.
Enjoy and be safe.
xo

Hi,
When it rains it pours they say...our little friend Avery is running a high fever and after just being released from the hospital for pneummonia her Mom is understandably worried. Avery isn't showing any other symptoms at last update so please say a prayer that this is nothing serious.

Thanks for all the well wishes about Xavier, and please continue to pray for his family who are devastated at the loss of their beautiful son.

We are doing well, Thank God and other than some allergy issues everyone is good right now. I made the reservations for our trip to TN so it is now time to start the countdown :) 16 days and counting until we get to visit with Eileen,Chris,Nate and Kyle and the newest Carter Grace :)
Thanks for stopping by and be sure to sign the guestbook so we know you were here:)

THIS IS A POST FROM XAVIER'S MOM FROM HIS WEBPAGE

"Hello there. I just want to thank you all for your support and prayers. Xavier passed away May 23rd around 6:30 p.m. Our sweet, little, beautiful, precious, handsome, funny,loving boy is now in the arms of the Lord. A family we know went home today and the father said, "I wish that you were going home too." We are, and Xavier is home also. I will post more later, when we have made the arrangements. God bless all of you. With Love, The Gibsons."

PLEASE PRAY FOR THEM IT IS SO SAD.

Hi,
Jordan and I went to Valley Forge park today with the Miller family. They have a daughter Lauren who has HRHS and is going to have her Fontan surgery on June 14th (say a prayer ) and we had a lot of fun. I wanted to add the photo of Jordan and Lauren to the album becuase it is soo cute. The kids had fun playing and it was nice to meet another HRHS board member in person :)

On the update front, all of our kids who needed prayers recentyl are doing well. Xaiver is still having quite a rough time so he needs some extra prayers, but Serena, Avery, Rebekah and Justin are all doing well hooray!
Thanks for all the prayers and for stopping by. I hope everyone has a great weekend.

*************UPDATE******
Xaiver is in heart failure and has "coded" today they are not sure if he is going to make it so please pray for him and his family. Thanks.

Hi,
Jordan and I went to the Atlantic City Aquarium the other day and I thought I would share a few of the photos. We had a lot of fun, Jordan liked the tank where you can 'pet' the different fish and sea creatures and he "found Nemo" in a tank of clown fish so that was fun too. We had lunch and Jordan picked fried shrimp as his meal,fancy kid huh? Ha ha. We had a good time looking at all the boats and finding all the different things to look at all around the Marina outside as well.
Also, the new home page picture I had taken at 'Picture People' yesterday so I figured I would add that one too.

Hope you enjoy the pictures, have a good rest of the week.

xo
Dorothy

p.s. We have some extra prayers needed right now,please keep our special friends in your prayers. Avery who has been readmitted to the hospital for pneumonia.Serena who has her fenestration closure this week . Xavier is rejecting his heart and the family of Olivia who passed away earlier this week.
Thanks.

******UPDATE********
Thank you all for the prayers, Serena did really well with her fenestration closure,Avery is doing much better adn Xavier seems to be heading back in the right direction although he is still very sick. Thanks again for checking in and for all the well wishes*******

Hi,
I got word this morning that a little girl in Jordan's HRHS group passed away last night. Her name is Olivia and it was so unexpected and shocking since she was supposed to go in the hospital for her second surgery tomorrow. Please say a special prayer for her family who are going through this most horrible of times.
thanks.

Hi,
Justin is doing much better. Thank you for all the prayers. Also Eileen and the baby came home today. I added a picture of Grace in the album . She is a doll. Xavier is moving steadly forward Thank God and our very special heart friend Rebekah is also doing better from her bout with the nasty rotovirus.Thanks for all the prayers said for everyone .
That is about all I have for now. Thanks as always for checking in .

Hi,
I just wanted to share some pictures.I know, I know so UNLIKE me to have new pictures haha They are of the other night Jordan decided he was going to play "King Jordan" by putting his Elmo chair on our couch. He then proceeded to
royally fall on his keester . Luckily it is a soft couch and he is a hard headedkid haha.Also there are photos from Mother's Day we went to church and there is a playground across the street that he always wants to go to but it has been too chilly so today was so nice we let him go and boy did he have fun. He also decided to give Mommy some grey hairs for a Mother's Day gift and learn how to slide down the slides on his tummy and do "headstands" when he landed. arrgh. I hope you all had a GREAT Mother's Day Heaven knows we all deserve it.
****************
9am Grace C Micheala Carter came into the world today 6lbs 10 oz and Mom and baby are doing fine.
hooray!******************

**********10 am Justin is being taken back to the hospital today as he seems to be devleoping some complications from his surgery. Please pray for him thanks*******
6pm Justin has an infection and some fluid build up but they are going to let him treat at home for now so fingers crossed he goes back Fri to see how he is doing. Thanks for the prayers.******

WAHOO!! It is a day of great news. My cousin Eileen will be able to wait until Monday to have baby Grace so that is great. Our friend Justin who just had serious heart surgery is home only 5 days after the surgery!Our friend Avery who was born with HLHS has also been sent home today becuase she is doing great! Also,Xavier got the results from his latest biopsy and it doesn't look like he is rejecting his heart at all hooray!We were also keeping track of a boy named Ryan and he got discharged today as well.
Such a blessed day.
Hope you all have a great Mother's Day!!
Thank you so much for the prayers.

Hi,
Well it looks like Baby Grace will be holding out until Monday, since Eileen's blood pressure has made it this far. Jordan and I will be going down to Tennessee on June 10th to visit for a few days so that wil be fun !

Our friend Justin is doing so well they are talking of sending him home tomorrow!!! Please keep the prayers coming for that.

Also, Xaiver is still doing fairly well but stil needs lots of prayers. Finally a little girl named Avery who we have been following is also about to be sent home from the hospital and she is a newborn so her Mommy may get to enjoy her first Mother's day at home hooray!

On that note, I hope everyone has a great weekend, and to all you fellow Mom's out there enjoy your special day!!!
Thanks for checking in and all the prayres.

HI,
I have updates on everybody :)
My cousin Eileen is doing better, her blood pressure has stabilized and if it stays that way they won't be taking the baby until next Monday so that will be about when they wanted to so it will be good if they can wait.

Our little friend Xavier who had the heart transplant is doing well, he still on a ventilator but is making progress.

Our not so little friend Justin (he is 17 ) had his heart surgery today finally after several postponements and everything is going very well for him so far but it was a very serious heart operation and he has a lot of scar tissue from all his surgeries so it is a critical few days now for him.

Also, one last thing my Bob was working on his truck yesterday and a belt snapped and hit him in the head , knocking him out cold, splitting his forehead open and leaving him laying on the ground in a pool of blood nice huh? This all happened in the back yard and I didn't find out until I got home from church!! Why do men wait until there is no one around for this stuff?? So he is basically ok and didn't need stitches or anything but if you could keep him in your thoughts as he has a big lump and quite a nasty gash in his head thanks.

As always I appreciate the prayers and I will let you know if things change with anyone.

**************UPDATE********
HOORAY! Justin is out of CICU and in a regular room. It is fantastic news and he is doing really well. He has come AMAZINGLY far in just one day and is the strongest person!!! He has a way to go but at the rate he is moving he will be home in no time. Thanks for the prayers they are working for sure!!!If you want to leave a message his page is nj/justinw
******************

Hi,
I just wanted to update a little on our firends. Our friend Xavier is still holding his own, he is still a long way from "better" but is making strides so I thank you for your prayers and keep them coming.

My cousin Eileen has now been put on bedrest until Monday, so things aren't exactly going int he direction we wanted. Please keep her and baby (to be) Grace in your prayers too.

We are doing fine and looking forward to a weekend of parties on Saturday there is a Christening of our friends John and Terry's baby Jason and Sunday our friends Bob and Jeanine's son Bobby is making his first Communion.It should be a fun/busy weekend. (Read this to mean look for new pictures Monday haha)
Thanks for everything as always, and I will update more if things change.

Hi,
Jordan and I went to the Crayola "factory" today. It was a lot of fun and surprisingly I took some photos I wanted to share :)

There is a lot to do there including lots of Crayola activities to do and take home,they give you tokens to "buy" markers and crayons from giant marker dispensers. There is a place for the little ones with a garden theme and the makings of a gigantic sandwich (see photos of Jordan trying to eat sandwich haha). There is a big Crayola store, a canal/transportation museum a weaving display and a Pez museum.

It was a very busy day! Jordan of course slept the whole way home so he is ready to party now whereas I am totally ready for bed!!!
I hope you all got a chance to enjoy the weather this week and have a great weekend.
xo
Dorothy

***************************************
I just wanted to update you on our little friend Xavier. There is great news Xavier is off ECMO!!! This is very important for him to be pumping his own blood . He also has had his chest closed which is a great sign that they are confident they won't have to go back in for anything else. These are all encouraging signs,although he has a long way to go yet. If you could please keep them in your prayers I would apprecaite it very much. Thanks.

********Also*********
My cousin Eileen in TN is having a rough time with her preganancy if you could please add her to your prayers list. She is not due for several weeks but may be developing toxemia and they may have to take baby Grace early. Also my Godson Nate(Eileen's youngest, although he won't be the youngest for long) fell and cut his face pretty bad so if you could throw in a prayer for him too I would appreciate it :)
Thanks as always.

HI,
I hope everyone is having a great weekend. I just had to post becuase today is one year anniversary from Jordan's Fontan. I cannot belive it as I sit here that it has been a year already! It seems like just yesterday we were finding out we were pregnant and now Jordan is almost 3 and it has been a year since his last OHS It is such a weird feeling to be so long post-op for the first time in his life. It has been so 'strange' to get on with our lives this year without something hanging over our heads like every other year.We have been so blessed to have such a wonderful little boy in Jordan and to have such a greatrecvoery from his surgery last year, that people don't even belive me when I tell them he is a CHD'er. It is so precious the gift we have been given in him,and he is our world. We have a lot of plans for this summer since it is the very first one where we won't be in the hospital at all (God willing) and we want to make the best of it. So look out world he we come!!
So, I guess that is all I just wanted to share my feelings today that I was surprised I even had I didn't know how I would feel today and it is strange becuase I feel so happy that we have made it this far but I feel sad too.I don't know maybe for all the suffering Jordan had to endure to get to this point, the friends we have lost on the way or the scariness of his future
Anyway, thanks for 'listening' have a great weekend!

I took Jordan to the Cape May Zoo today to enjoy the weather we had (74 degrees hooray!!) Jordan had a lot of fun looking at all the animals,he liked the giraffes, zebras and lions and loved the lizard house particularly.He kept "wiggling" his butt to be like the snakes it was quite the crowd pleaser:) Jordan liked the Zebras extra once I pointed out they were in stripes just like his shirt, he kept telling everyone who would come up to look at the Zebras, "They Are Striped Like me" ha ha. We played at the playground,ate lunch and of course visited the gift shop "Bear". As always, I wanted to share the photos,I hope you enjoy them .
xo

Just a quick update. Caringbridge evidently has a new policy that disallows any links to other kids pages so that is why the pages are gone. I will make sure to keep updating about our special friends though and if anyone wants to have the links email me and I will make sure it is ok with the parents and give the addresses to you.
Other than that things are going really well for us, Jordan is doing great. Kearsitn is home and doing much better now. Bethany's family had the new addition Tamsyn Willow on March 21st and she is doing well (so is Mom) and Justin's surgery has been postponed (AGAIN!!!) until April 14th. The good news is this time it is not becuase of illness but hospital schedules so we wait........Today was the bridal shower for my cousin Annie and we (me and Jordan) went and had a lot of fun . I put two new photos in the album.
I guess that is all right now thanks as always for stopping by.

HI,
Jordan's school had an Easter party today, and even though it is not his day to go they wanted all the kids in today so he got a free day of school and a party to boot !Jordan had a lot of fun watching the kids take turn dancing and all the kids had fun finding the gifts the Easter Bunny left behind for them. They had cake and stories and it was a lot of fun. I of course was there, camera in hand. Hope you like the photos,they are in the album. We hope you all have a great Easter.

Well we made it through :) So stressful, we did a 6 month ECHO and when you add that to the usual EKG,BP,PulsOx and height/weight Jordan was about fit to be tied....Anyway,he is 33lbs 1oz, 36 1/4" his BP was 121/88 with a pulse of 132. His O2 was 92 at non-screaming rest which only lasted about 7 seconds lol) and at screaming was still hovering around 89-90 so we were happy with that. The ECHO showed the fenestration is still open. We talked to the doctor and he said that he will keep tabs on Jordan's Hemoglobin levels as this is a good indicator of when it is time to intervene with the fenestration. Dr. Gidding(PC) said that the size of Jordan's fenestration is actually working really well for Jordan right now with the blood mixing in a very favorable manner. So, he is not concerned and says that it may close on it's own, or he may just want to leave it open as long as Jordan doesn't get symptomatic. So 6 months from now before we go back for follow up Jordan will get a blood test and then we will go from there. All in all it was a very good, very reassuring visit. We asked about Potassium levels -does Jordan need a supplement and the answer was no (yay) since he is on such a low dose of Lasix.We asked about liver function and albuimum levels(sp?) and the doc said that the tests for it and the symptoms for liver trouble go hand in hand and one does not exclude the other so unless Jordan is symptomatic he would rather not bother with extra blood tests (yay again) and we asked about CPR/Hemilich , I didn't know if, God Forbid, Jordan needed either of those things would his sternum wires be an issue but they are not the PC actually said 'nah the sternum heals completely in about 6 weeks so you can bounce him of the floor if you want' . HA HA I think NOT!!!
So, thanks for all the good wishes they mean so much to us.
Have a great weekend.

Bethany's funeral was beautiful from all accounts and I thank you all for praying with me for the family. Justin's surgery was postponed due to the illness he had so I will let you know when it is rescheudled. His family is a little bummed sinec they wanted to get it over with, but it is better to be safe then sorry with these things so a few more days/weeks will have to go by :( Jordan still has his cardiologist appt on Thursday so I will update after that.
Thanks for checking in on us.

HI,
Our time to pray for Bethany is 10am (eastern time) on Monday the 7th.For those of you who don't know what I am talking about, the heart group I am in is having an all day prayer session for our little friend Bethany and her family as it is her funeral day. It is so sad that she lost her battle with CHD, it takes too many young lives.........Also,our friend Justin is scheduled to have his surgery on Tuesday the 8th so if you can please pray for him as well.The last time I talked to his Mom she thought he might be coming down with something but since I haven't heard that anything was postponed, I am going on the assumption things are on for Tuesday.
thanks.
I will update later in the week with news of Justin and also Jordan has to go to the cardiologist on Thursday so fingers crossed for that visit.
Thanks as always..............

HI,
I took Jordan to his first "Real" movie at the theater yesterday , and what would a milestone be without pictures.......So I thought I would share. We saw Pooh's heffalump movie. It was cute, only about an hour long so Jordan held up well. He loved the seats and the popcorn and looking around the lobby at everything. We are looking forward to going again soon when Bob can go with us.

Hope you like the pictures.
xo

p.s. please say an extra prayer for Justin, he goes in for heart surgery on Monday and his Mom thinks he might be coming down with something.This would stink becuase while they dont want to take risks, they hate to have to postpone things. On the good side, Justin (who plays Bass guitar) got a bass donated to him from one of his favorite bands Green Day, so that was awesome. Go out and buy some Green day cd's y'all haha.Anyway, he can use all the prayers we can give him.
Thanks.

Hi,
Hope you are all having fun in the snowstorm.We have some new pictures to share and since I am not going anywhere in this mess outside I figured now would be a good time........We had fun over the weekend going to visit John and Terry and Jason or 'JJ' as they call him . They are all doing well. Jason is getting so big , you can see in the pictures. He is only 5 months old and already in 12-18 months size clothes!!JJ loved having Jordan do his "tummy time " with him, and Jordan liked playing with all of Jason's toys .

Jordan also had fun with some indoor snow fun this weekend. He wanted to make a snowball but didn't want to get cold so he asked if we could do it inside,well you can see how small the snowball is but I said hey why not??Mommy didn't want to get cold either :)

Other than that life is pretty quiet around here,(yay).

If you could please still keep our friend Kearstin in your prayers she is still in the hospital, and Bethany's funeral is on the 7th so her family needs all the strength they can gather I am sure.Also please remember our friend Justin he goes in for heart surgery next Monday, thanks.
Hope you have a good week.

HI,
Thanks to everyone who has been sending well wishes to the family of our heart friend Bethany who became an Angel yesterday. The family is making arrangemtns and when they have times etc our heart group is going to have a 24 hr prayer vigil so I will share when my hour is so you can join me if you wish.
On other fronts, Justin's surgery has been rescheduled for March 8th. It is less than 2 weeks away and his family is also in need of our prayers. I will of course let you know how things go with him.Also, our friend Kearstin is still in the hospital, we haven't gotten an update in a few days but we are sure she needs your praryes too.
As far as we go things are quiet thankfully.
Thanks for all the prayers and for stopping by.
don't forget to sign the guest book . We love to read it and see who "visits" us.
:)

Bethany lost her fight this morning at 12:28. This news is so sad and I thank you for your prayers.

The latest news I have on Bethany is that she is taking "babysteps" of improvement so that is a good sign. Her parents were actually able to get some much needed sleep so the prayers are working. thanks.
I have no further word on Kearstin, but she does certainly need all the pareyrs we can give her.
Justin's surgery is going to be on or around March 1st and he is taking it as well as can be expected, he will be looking forward to getting out of the hospital and playing baseball this spring (he is quite the start catcher!)
Thanks again for the prayers. I will update when I have more info.

So much for good news...............Kearstin is having a really really rough time and needs every prayer we can muster. Her link is at the bottom if you would like to leave some words of encouragement for her family or read her story.
Also Bethany was rushed into surgery at 9am and is listed in criical condition so please pray for these babies they have been through so much.
I will update later when I know more.
Thank you .

*********UPDATE************
THis is the message we got on our CHD group from Bethany's fmaily.
"Bethy out of surgery approx 2.30. Still not well but they are sorting her out. The conduit they put in had developed a clot and he had no choice but to take down the fontan. She has an atrial shunt for oxygen levels. She is still critical and not out of the woods....time is the deciding factor now. "

***UPDATED UPDATE*******
Justin will have his surgery MArch 1st or thereabouts, please keep them all in your prayers thanks :)

The update on Justin is he did fine in the CATH lab, but unfortunately he is going to need another open heart surgery to repair his pulmonary artery. They were trying to open it while in the CATH but they couldn't so he will need to have surgery sometime in the next few weeks to months.It will have to be soon but they do have some room to schedule thankfully it is not an emrgency.But it is very sad as he is 16 now and has been dealing with this his whole life and is reaching a point where it is really getting hard to deal with emotionally. So, if you could please pray for him and his family I would appreciate it.
Also,the little girl in England , Bethany had a CATH as well to see why she is not doing better, the results were good but they still are keeping a very close eye on her as things progress. Thank you for the prayers.
I haven't heard any news on Kearstin, so please continue to keep her in your prayers as well.While I am at it, my cousin in TN who is due to have her baby in May had to go to the hospital the other day with what turned out to be severe dehydration and in the course of her exam they have determined that she is measuring about 3 weeks early, so we are hoping that the baby can stay in there as long as possible to "cook" for as long as she can .
Thanks so much for everything , hopefully next update will be filled with good news :)

***********UPDATE*********
Unfortunately Bethany will need more surgery evidently the pressure in her lungs is not what it should be and she will need to have a tube put in to drain(?)them . The news is coming from England via text messages on pagers so it is a little rough but she really really needs prayers as do her family, her Mom is 7 months pregnant on top of all this.........thanks

HI,
Yesterday was a great CHD/Valentine Day. Jordan's school had a party and we had a lot of fun. We are looking to go to the cardiologist in 3 weeks os we are gearing up for that , but otherwise we are doing pretty well. Jordan and I both have a headcold/virus thing that is giving us fits of coughing and runny noses, but we seem to be over the worst of it. The doctor told me the cough can last up to 6 weeks yikes!
Please take some time to pray for all our friends. Kearstin is having a rough time right now and her Mom is doing so great trying to keep up with her and the new baby Katelyn, it is so hard on the whole family.
Justin goes in for a Cath procedure on Thursday and this will tell if he needs surgery and to what extent so pray extra hard for good news for him as well as a new friend who lives in England, her name is Bethany and she has been in the hospital for I guess about two weeks now and not moving forward as her family had hoped so as always thanks for stopping and thanks for the prayers.
I will update soon.
xo

We just wanted to share our wishes for a peaceful
Valentine's / Congenital Heart Defect Awareness Day.
xo

Hi All,
I got some fantastic news this morning and wanted to share. I had been in contact with the State of NJ the Governors office trying to get them to make Monday 2/14/05 officially Congenital Heart Defect Awareness Day in honor of Jordan and all the children who are born with heart defects every year(more than 40,000 a year in the US alone), well much to my happy surprise I got an official proclamation in the mail today !! So, Monday 2/14/05 is now (in NJ anyway)
"A Day For Hearts: Congenital Heart Defect Awareness Day."
I am so Happy and proud to be involved in spreading the word about CHD's and how many people they affect.
I just wanted to 'toot my own horn' a bit. Thanks

p.s. I put a picture of it in the album

Hi,
Today was the big GI appointment for Jordan. I have to warn you it is a little stomach turning so if you are squeamish skip to the bottom:)
We have good news and not so great news. The not so great news is that Jordan's colon is "flabby" and his nerve endings have been deadened due to the chronic constipation he has suffered since birth. The muscles in the colon evidently get worn out when there is matter in them for a long time, and the longer it is in there the less water there is to move it so the more they get used and they wear out from overwork. The nerve endings also die in much the same way. So, this creates a vicious cycle and nothing gets done, so to speak. The good news is there are therapies for this and we are hoping it will work for Jordan. The plan right now is to "clean him out" with a rather aggressive laxative program for a few days, then start him on a maintenance dosage of a different prescription medication that should even things out without overstimulating the muslces and such. This is good news too, because if it works , and the doctor seems to think it will, his muscles will eventually regain their strength and the nerve endings will regenerate. So he theoretically could have a "normal" system someday. This is a long process and we are talking about at least a year of the medicine, but if it works, it will be worth it. The doctor doesn't think it is due to him "withholding" or holding it in like a lot of kids with this trouble, so she says this will increase his chances of the medicine working. Also, we have been given a reprieve from having to start potty training, the doctor says we should wait until things settle down a bit with him to even start so yay, no stress there for awhile either :) We can only wait and see how everything turns out. The doctor was very upbeat, so we are too.Of course, the next few days should be fun, we are taking volunteers for diaper duty ha ha, but we are hoping this does the trick.

After the doctor visit we went to visit our friend Kearstin, who has been moved out of ICU which is great,although unfortunately we missed her Mommy who had just left to run some errands. Kearstin looked good though she was sleeping peacefully when we peeked in on her. She has had such a rough time, we are thankful for all your prayers, keep them coming :)

THEN after that we went to the Philadelphia Car Show and Jordan as you can imagine loved it! We had a really great time looking at all the cars, and window shopping :)
So, since we had to get up at 5:30 to be in Delaware for 8 am, we are all exhausted so I am going to end now and try to get Jordan to get to bed early (wish me luck )
Thanks for checking in ..........

First Day of School Report
We did it! Jordan (and me)made it through his first day. He had no trouble letting us leave him&infact was a little pushy about us going if you ask me lol. We got there a few minutes early,let him get settled then I told him we would be back after nap time later this afternoon and he said "Ok love you Mom and Dad See ya later". So, that was it. He stayed all day with no problems, had fun playing with the kids and doing all the activities. His favorite part of the day was making macaroni art.Other than the 6 diaper changes the poor teacher had to do (becuase of his poopy meds)it was a great day by all accounts! I added pictures of course, hope you like them.We are very happy needless to say that it went well. You just never know with Jordan he is so shy sometimes and other times he surprises you. Hope you all have a good weekend.
GO EAGLES!!!!!!!!

P.S. Please pray extra hard for our friend Kearstin who is still not doing well at all. Thanks

Hi,
Jordan had a check up yesterday at the pediatrician and everything is great. He is 33 pounds, 39 inches(!) and is right on track.He is now on yearly visits unless there is a problem so that is good. The main reason we had to go was.......drum roll please..........Jordan is starting Pre-School on Friday! Gasp. I am sure he is going to love it, but since he has never even been to a sitter before I am a little nervous.He is going to start out at two days a week 5 hours a day so we will see how that goes and go from there.
In honor of his big new step we got pictures taken there's a shock right?) I hope you like them.
Everything else is going well we are looking forward to Sunday and the big Superbowl and next week Jordan has a specialist appointment to try to figure out some of his "digestive" troubles.
So, I will update again after the specialist and let you know how that and his first week at school went. Hope you all have a great week.

xo

Hi,
We hope you all had a great weekend.
We were very busy. First we went to our friends Cheryl and Walt's for a visit/2nd birthday celebration with their daughter Mackenzie. Jordan loved playing with her and her new kitchen set that she got for her birthday. Mackenzie's little brother Gavin was a quite hit too, so cute!
Then when we got home Fri night I got an email from a woman who is working on the Congenital Heart Defect Quilt and she sent us a copy of the quilt block that has been made for Jordan. I don't know if you have heard of the quilt, but it is along the lines of the famous AIDS Quilt. The CHD quilt travels all around the country to different events to promote awareness of Heart Defects and to honor all those that struggle and those that have lost their struggle. It is so special that Jordan has been included in such a fantastic project and we are very proud. I have attached a copy of the block. We are hoping the quilt makes it's way to this area if it does we will let everyone know.
Saturday as most of you know I am sure, we had a tremendous snowstorm, the first big one of the year. So we got out in it a little bit. It got really cold and bad quickly so we weren't out for long, but enough to get some pictures of course :) We ended up with about 13" all together at our house according to our unscientific yardstick stuck on the deck.
So, then as if that wasn't enough excitement on Sunday we watched our Eagles win the NFC Championship Game!!!That's right you read right THE EAGLES ARE GOING TO THE SUPERBOWL!!!! We are sooo excited and happy I can barely contain myself ha ha.
So, I think I got everything ,whew. I hope you all made it through the yucky weather and have a fantastic week.Hope you enjoy the pictures.
xo
Dorothy

Wish this could be a better update but our friend Justin had a not so great cardiologist appt today. They have determined he needs a balloon type Catheter procedure. The pressures that are in his heart have become problematic so it is now another round of hospital visits, hopefully they can do all they need to do in the Cath lab and not have to do surgery , but there is a distinct possibility he may need surgery so please continue to pray for him and his Mom and Dad (Lyn and Don).
Speaking of Don, my cousin's father in law had his surgery today and things went well as far as the procedure, but they won't know the results of the tests on the tissue they took until Monday, also they may have found more while they were inside him (what else does he need right?) so please also continue to pray for him and his family.
I haven't gotten an update on Kearsitn, but got wonderful pictures of her new baby sister Katelyn , who is 3 months old that were just the cutest, so at least there is one ray of sunshine to report!
We are all doing well here and preparing for a big snow storm this weekend, lots of bread and milk on hand ha ha.
I will update again as I have more news.
Thanks as always for caring...........
*******LATER**********
I just found out that Kearstin is not doing well at all. While she has gotten over her infections, there is unexplained swelling of her face, neck, and stomach. The doctors are at a loss as to the cuase. The family is also having trouble with nursing care for when they go home.Please pray for them, they are such wonderful people and it breaks my heart to see them go through all this with Kearstin. Thanks

Hi,
Just wanted to update a little on our prayer list,tomorrow is the first surgery for my cousin's father in law ,Don, so if you could please add him to your prayers I would appreciate it. Also, our friend Kearstin who we haven't heard form in a little while and Justin who we are waiitng to hear how his doctor appt went.
There is good news however, my cousin Eileen found out that her baby due in May is a girl, so that is good news, the family is all very excited.Her name will be Grace C.Michaela Carter, so she is being anxiously awaited (not too early though- we will wait) ;)
Other than that we are having our first "real " snow of the year maybe an inch or so so far, no biggie hopefully it won't get much deeper. Tomorrow is supposed to be in the 40's so it won't last long anyhow.
I will update as soon as I hear from any of the above mentioned prayer requests.
Thanks as always.
xo

HI,
Hope you all had a great weekend. We sure had fun yesterday watching the Eagles win wahoo! I had to take at least one picture of Jordan in his "new" vintage Eagles hat.I gave it to him on Fri and had to wrestle him out of it for bed and it was the first thing he put on in the morning Sat and Sun,so maybe it was good luck.I will tell you this, little guy is gonna wear it next weekend for sure for the Championship game, we are not taking any chances ha ha.

Also, I keep a film camera up in his room for the 'unexpected' ,and got the film back the other day.The pictures span the past several months but some were worth sharing I thought.
Have a good week, and we hope you all stay warm
xo

We were invited to a great Sunday dinner at John and Terry's today and, you guessed it, I took pictures ha ha. We had a fantastic pasta meal, and there were lots of kids for Jordan to play with . There was one little girl whose name was Jordan too.Jordan had his very first tea party while we were there and seemed to enjoy it very much .THen he was brave and went upstairs with Terry all by himself (you know my shy little man) and got a present they had for him. It was so nice of them!
Jason and Terry are both doing well, and we thank you again for all the prayers for them. I hope you all had a good weekend.

The good news is that the dogs our cousins in TN lost are back at home so yay! The other news is the baby wasn't cooperative in the sex reveal department so we will have to wait until the 17th for Eileen's next ultrasound and chance to tell. Not that it really matters the baby looks healthy and that is the most improtant thing.
Jordan seems to be over his little cold/fever thing he had yesterday and is running around like a nutball today, right now as I type this he is stacking "Oodles of Noodles" all over my office . Weird kid.
I added a few pictures in the album of him doing his paint your own soccer ball kit that we got from our friend Rebekah's Mommy, who sells for Crayola's new home division.He had a lot of fun doing it so of course I took photos ;)
Hope you have a good weekend. Thanks for checking in .

HI,
I know you are all so good about prayers ......My cousin Eileen's Father in law (Don Carter)just got news that he has a rare form of cancer that at this point seems to be un-treatable. He is her husband's father, and the grandfather to my two Godsons, and the family is beside themselves. His doctors are going to consult with some specialists and hopefully come up with a plan but right now everyone is so upset, and to top it all off their dog got stolen last night and today is the day Eileen (who is due in May) has her ultrasound to find out the sex of her baby. So, if you could please send a few extra thoughts their way I would appreciate it thanks. I will update when we find anything out.
Thanks.

We made it to Jordan's first football game yesterday, boy what t a trip! It was like 1400 miles to walk from the car to the stadium, and of course we couldn't bring the stroller so it was a pass off between me and Bob, then letting Jordan walk, but we finally made it :) We had really good seats, and there was no one in front of us so Jordan could put his feet up how he loves, he is nuts;)
We had a lot of fun, Jordan loved it, and was so good the whole time. Unfortunately the Eagles lost but hey I guess you can't win them all .It wasn't too cold and we were bundled just right. Jordan got an Eagles die cast car and that is now his new favorite car, of the three million he has that is saying something for it to be his favorite ha ha. So, I added a few pictures to the album from the game and the new home page photo is him in the stands.
We hope you had a great holiday season and thanks as always for stopping by.
p.s. Please continue to pray for our friend Kearstin, things are still very tough for her right now, and our friend Justin has broken his wrist snowboarding (boys will be boys I guess haha ) and he could use some prayers as well, thanks.

HI,
Hope everyone had a great New Year's Eve. We had a lot of fun going to Bob and Jeanine's house until about 10:30, then we headed home and Jordan made it until midnight. Of course there are pictures.....the first one is me and Jordan looking at the clock on the stove, you can't see the time in the picture :( but it is 12:00. He was very proud of himself for making it to midnight, even though I don't think he really knew why he was proud,to him staying up late is an art form so it was just 'another day at the office' for him ha ha. The second one is Me,Bob and Jordan shortly after midnight. We are looking forward to going to the Eagles game tomorrow, so wish for good weather.
Also, if you could pelase pray extra for our friend Kearstin , she is having a really tough time right now. Thanks.
We hope this year is Happy and Healthy for you all

Hi,
Well today was a visit from our cousins who live in Tennessee. We all had a lot of fun, and the boys loved playing together.Jordan and I met them at my parents house as time allowed for more visiting that way.The boys played with all their new stuff,becuase of course their favorite part was opening the presents. I am sure none of them got enough last weekend haha.
So,I thought I would share the pictures, they are in the album. Hope you are having a good week.
Happy New Year!!

HI,
We hope you all had a great Christmas. We had a very good time. On Christmas Eve we went to Jordan's "Pop-Pop & Mom Mom's " and then went to church and then on to his Godparents house. Then it was home to our family Christmas Eve pajamas (yes we all had coordinating jammies) and to bed to wait for Santa. Big surprise Santa came and everyone got lots and lots of presents!Jordan has some favorites including a medical kit, a town to play with his cars, a stuffed "My Pet Monster" and lots and lots of trucks, cars, buses etc etc. Jordan also got a homemade sweatshirt from Mommy that says "Little Guy" on it and there is a matching one for Daddy that says "Big Guy" and as you can tell from the picture, he was thrilled with getting clothes, but not to worry Bob was much more appreciative haha. Matt and Greg and Bob and I also got lots of nice stuff, and more improtnantly got to spend a three day weekend together as Bob's regular days off are Fri and Sun and the holiday was on Sat so it worked out great. We also were extra happy becuase this was really Jordan's first "real" Christmas and we loved watching him tear into the gifts and get excited at everything . It was great especially because his first actual Christmas he was on his way to the hospital a few days after Christmas and last year had just gotten out so this was the first year we didn't have some major medical drama hanging over our heads. We are ever so grateful to God for this miracle.
So, of course in everything we did I took lots of pictures and I wanted to share them . We are looking forward to a visit from our cousins, the Carter's from Tennessee later this week so be on the lookout for more pictures then ;)
Also,if you could please pray for our friend Kearstin, she is not having a good time of it at all and is in the hospital for we don;t know how long now. Thanks as always for checking in and the prayers.
Have a good week.
xo

HI,
Jordan and I went to DuPont today to visit with Kearstin and her family. We actually got really lucky and our dear friends Rebekah and her Mommy and Daddy were there too because Rebekah had a doctors appt today , what luck! Anyway, Kearstin has had her surgery to put in the airway tube. It is hopefully going to reduce her lung difficulties and the doctors think it may even help her seizures, she has more of them when under stress and last week was having up to 40 a day ! So, they think that it may be a good thing overall, the bad thing is that it is such an invasive thing, plus they have to stay in the hospital for about 3 months to make sure no infections or anything else happens.Kearstin will have to go home on a ventilator which her Mom and Dad have to learn how to use plus Ron and Florie need to be fully trained with the Trach tube how to suction it,clean it,change it and any (God forbid) rescues that need to happen they have to be able to administer oxygen to her. It is all very scary as you can imagine, and having a 2 month old as well to take care of is going to be challenging to say the least. So, I made them promise to call me if I can help in anyway and Jordan and I will try to visit again once Kearstin gets out of ICU when she gets into a regular room. Thanks as always for the prayers. Also, while we are at it my Godson Nate has to have surgery tomorrow as well so if you could please keep him and his family in your prayers as well we would appreciate it.
Thanks and have a great Holiday!!!
xo

HI,
We put up our Christmas tree this morning and I thought I would share the pictures.Jordan was so good at putting on the ornaments, we were really surprised his fat little fingers worked so well;)it was a nice time and we had a lot of fun.
Hope you all stay warm this weekend.
xo

Well, the good news is Jordan made it thought the bug fine and dandy! The bad news is Mom and Dad had to go through it too :) I am about done although my stomach is still not 100%. Bob is sleeping right now as thankfully today is his day off, but he has been hit pretty bad by the bug too. Matt and Greg seemed to skate by this time, probably because they are in school and exposed to so much more they have better immunity.
Other than that things are pretty quiet here. We are getting ready for Christmas and hopefully a little later today will be making Gingerbread house if Mommy and Daddy's tummy's cooperate.
Oh!I almost forgot. The really good news is that Bob won a pair of EAGLES tickets for Jan 2nd. It is the last game of the season and Jordan gets to go too as kids 2 and under are free wahoo!! I can't wait to see the new stadium, and hopefully Jordan will love his first real footabll game. We can only pray for good weather. So, I guess that is all for now.
Thanks for stopping by as always.
I'll update again soon.

Hi,
I only have time for a quick update. The xray report showed a lot of constipation but nothing seems to be wrong with the "pipes" as they called it. We will see on Feb 25th he has an appt with GI doctors.
As for Jordan right now he has a horrible stomach virus and is sleeping, throwing up and thats about it. He hasn't eaten much since Sat and his dr gave him medicine that makes him so sleepy :( but hopefully in a few days it will pass.
Other than that I added his new XMAS photo to the home page and to the album there is a second one.
Hope you enjoy it. I will update again as Jordan gets through this yucky bug.
Thanks for stopping by!

Hi,
Hope you had a great Thanksgiving. We did. We stayed home, and I cooked and it was a lot of fun. Jordan loved watching the parade and all the snacks and food.
Today we are going to DuPont for xrays for the GI doctors. Hopefully this will be the first step in fixing his constipation problems. Plus while we are there we might be able to get some tax free Christams shopping in haha.
Well, thanks for checking in and I will update when and if we learn anything from the xrays.(cross your fingers)
xo

Hi,
Hope you are all doing well. I just wanted to update quickly while I had a free moment. Jordan and I got to meet a Philadelphia Eagle this weekend and get his autograph! Boy did Jordan love that , he kept saying Football guy Mommy? It was cute. Then he did his chant of A-B-C-D EAGLES! it is so funny, he would do it every time the crowd would do E-A-G-l-E-S EAGLES! Very innovative my boy :0
On the health front I got an appt for Jordan with the GI Doctor but it is not until Feb 25th! I couldn't believe it, but they are really crowded schedule wise right now and they have lost a doctor so...I guess we will push on for now doing the best we can to manage his problem . Bob and I are going to take him for the xray series on Fri though, so if something is immediately noticeable his ped will get the report......
I guess that is all for now. Thanks for checking in !

Hi,
Just wanted to check in real quick. Florie had her baby the other week, I keep forgetting to post it. The baby seems to be fine. Florie has been understandably busy so we don't have many details but the baby was named Katelyn and I thank you for all the prayers.
Other than that Jordan had his first trick or treat last weekend. He dressed as his pumpkin man and had a lot of fun going with Bobby who dressed as Elvis. I thought Jordan being so shy he would have hard time but I guess once he figured out candy was involved that was all it took!
Just wanted to post some pictures.
Nothing else much is going on, I do need to take him to the dr soon because his chronic constipation is getting much more severe and I am afraid something may be really wrong.....so I will keep you posted.
Have a great week!

HI,
Jordan had his storytime group Halloween party today so I thought I would share the pictures. The first picture is from last night however, when Jordan told us that he needed to make room for new toys that Santa is going to be bringing him (pretty sure of his place on the "nice" list I suppose haha) so he figured the best way to do this was to take all the toys out of the toybox and pile them on his couch.He was very committed to never using his couch again until I told him that it really didn't count as 'making room' when you just moved them from one place to another.I told him I would put in a good word with Santa and he could keep his toys, so then he decided he would keep them and it would be fun to jump in the big pile he had made. I thought it was cute, his big idea, so I figured I would share the picture of that too.
Hope you are having a good week. Enjoy the pictures.
XO
Dorothy

HI,
I just wanted to share our trip to the cardiologist today. It wasn't a great trip for Jordan because he got very upset by all the tests they do ( blood pressure, oxygen levels etc) but we got him calmed down enough to do them and everything looks fine and he doesn't have to go back for 6 months hooray! It makes me so sad, sometimes he is fine with the stuff they do there,but other times he is so upset by them. I guess after all he has been through sometimes it is like ENOUGH already ! But, like I said we got him through it and all is well. Thank God.
Other than that things are pretty quiet here. We went to visit John and Terry and the baby the other day, and I put some pictures at the bottom for you to see. Jordan is totally in love with PT Cruisers right now, they are his favorite car in the world, who knows why but hey he's 2 right?When he sees them he yells PT CRUISER CAR at the top of his lungs. John and Terry have one so of course one of the highlights of a visit to their house is always seeing the car, that is why Jordan looks so happy in the picture he is in a state of "I Can't Believe it is RIGHT HERE!" He usually only sees them from the car window.
So,Terry is feeling much better. She is still rehabbing at home, and has nurses coming everyday , but it is starting to feel stronger. We thank you all so much for all the prayers during her illness. John may actually be able to go back to work in another week or so they think.
Speaking of prayers also, our friends Cheryl and Walt lost one of their beloved dogs who had been a member of the family for almost ten years. It is very hard for them right now and if you could say a little prayer for them I would appreciate it.
Well, I guess that is about all for now. I hope you can enjoy the upcoming weekend, stinky weather and all ;)
Hope you like the pictures.

Hi,
Well we thought last weekend was exciting:) Yesterday was quite a day around here for sports, first our Eagles won their fourth straight football game, then our favorite race car driver Dale Earnhardt, Jr won the race!
Such a gorgeous day too, we got to play outside awhile and everything.It was a fun day and I figured I would share some pictures from our football frenzy :)
Also, our friend Terry who everyone has been praying so hard for is supposed to come home today or tomorrow as long as all goes well. The doctors say she has some memory loss from being without oxygen when she stopped breathing but she should be able to recover fully.It is going to be hard for awhile for them becuase the doctors say it is going to take some time for her to get back to 100so please keep praying .
Thanks so much as always, and we hope you have a good week.
xo

Hi,
We hope you all had a great weekend! We were very busy. First on Sat we went to our cousins Helene and Greg's new house for a housewarming, what a lovely home!Jordan got to play with his cousins Uri and Tirzah,what fun! Then later that night we went to our friends Cheryl and Walt's to see their beautiful new baby boy Gavin and to visit with their soon to be 2 yr old Mackenzie.
Then,as if that wasn't exciting enough we watched that awesome Eagles game on Sunday, and then after went to PA to visit our friend Rebekah and her Mommy, who had a Big Yellow Box party. Big Yellow Box is a brand new division of Crayola that sells, through home parties like Tupperware, craft kits for all ages. It was a great visit , and Crayola has some really nice stuff too (If you are interested in more information on it let me know).
So, needless to say Jordan had quite a weekend of playing. He was very good and we had a great time. I am adding a few new pictures, of course :)
As for those of you who are asking about our friend Terry, she is still stable, they have found two more blood clots , one in her leg and one in her neck. They have had to put her back on the blood thinners. They are not sure what is causing it, but she hasn't lost anymore blood cells or anything else so it is better than before. She is still on the ventilator though. John says she is waking up from time to time and tries to talk, so they say that is a good sign.I think Bob and I are going to try to visit either tonight or tomorrow so I will let you know if anything changes with her.The baby is doing great. Thanks for the prayers.
Speaking of prayers,my cousin Eileen is pregnant with her second child and could use a few prayers thrown her way if you could. Also,while I am asking ;) if you could please say an extra prayer (or two ) for our friend Kearstin and her Mommy Florie. I have told you about Kearstin and her struggles before,(her link is on Jordan's caringbridge page)but it has been a very, very tough month for them, and Florie is only 3 weeks from delivering Kearstin's little sister, they surely could use some extra prayers right now if you could spare it. Thanks as always .
Anyway, I will end here. hope you enjoy the pictures, and have a great week.xo
Dorothy

Hi,
Terry is doing a lot better. She is awake now, and the doctors think they have found the problem and corrected it and hopefully she will be able to come off the ventilator soon. She is asking for baby Jason and once she is off the vent the doctor says she can see him. So we are thankful for all the prayers, they seem to be working and keep them coming becuase they say she has a long road to recovery!
I will update again as I know more. We are all good here, and looking forward to a busy weekend of visits with cousins, and friends. I am sure there will bepictures on Monday ;)
Thanks so much as always for checking in!!!

Hi,
Well, thanks be to God that Terry made it through the night. Bob and I went to go see her last night,but by the time we got there they had to sedate her again so we didn't go in . We visited with John and the baby though for a few hours so that was good. As it stands right now, the doctors have no idea why but her red blood cell count just keeps dropping. They think that the placenta problem has something to do with it, but they say there is much more going on but they don't know what.It is very frustrating for John because even if it was some horrible thing at least knowing what it was and being able to have a plan of attack is preferable to this not knowing . The doctors are running all kinds of tests and just keeping her alive at this point, so hopefully they will figure something out really soon and be able to help her.
The good news is Terry works for Shop Rite and they sent a van filled to the brim with groceries , diapers , formula etc to the house . It had to be at least a $1000 worth of stuff! I have never seen such an outpouring it was so moving.It was like the trucks you see at Christmas time when they collect can goods, really amazing.So, at least John doesn't have to worry about that stuff for now. God really is good.
Well, that is all the info I have for now. As always thanks for the prayers and well wishes and I will let you know as things progress.
have a great week!

Hi,
Sorry this update was long in coming but we just heard from John. Terry is doing about the same,although there is some progress as they have gotten her blood pressure stable and think they have now narrowed down her largest problem . Evidently some of the baby's placenta got into her blood stream(?). While it is rare they say that it is a critical occurrence they say and can be fatal so it is touch and go right now.They have her on a respirator and she is breathing only about 40erself.
The baby is coming home with John today so at least that lessens his load somewhat not having to run to two different hospitals. John's sister is going to be there to help with the baby (as are Bob and I)so,hopefully things will continue to improve (or at least not worsen)with Terry and the nurse told John today that maybe over the weekend if things keep at this pace they may be able to let her come out of the sedation a bit. This would be a great blessing as John feels utterly alone without his wife, no matter how many of us are around him.
We met the baby last night for the first time (see picture in the album) and he is a sweetheart. He is so good, I held him for almost two hours and he hardly fussed at all, and he is a great eater! It is such a blessing.
Well, I will stop rambling. If things change I will keep you updated. Thanks again for all the support and prayers. I gave a printout to John last night of all your well wishes and it really touched him.
Have good day.

HI,
Just wanted to start agian by saying thank you all so much for all the notes I received over the past two days. I have been telling John about them and tonight after work Bob and I (at John's request) are going to see the new baby and I will pass them all onto John again. John has no family to speak of so this is extra trying on him, and I know he appreciates the outpouring form people he doesn't even know more than you can imagine.
As far as Terry goes, she was not stable enough to be transferred to Jefferson, so they stabilized her overnight and this morning they figured out part of her problem is post-C section internal bleeding. They are not sure if this caused the blood clot in her lungs or not, but a surgeon at Cooper says he can fix the bleeding with a minimally invasive scope surgery. This is good because she won't have to be sedated for so long, and with her lungs and heart already being compromised being anesthetized at all is so much more risky than it usually is.
We are praying fo her to make it through this surgery and for it to solve her problems. John said that she was semi-alert last night for a bit and was squeezing his hand and looked at him once. It is breaking his heart, this whole ordeal.........
Anyway, I will let you know as the surgery results come to us and hopefully I will have picture of the baby tonight.
Thanks again for all the prayers they are doing wonders so far :)

HI,
Just wanted to say Thank you for all the prayers for our friends. I just got word that Terry is stable now. Her condition is officially listed as 'serious but stable' so I guess that is better than the 'critical' she was listed as earlier. They have found a blood clot in her lung, and they think that his may have been the cause of her troubles, and that maybe another one had broken free, they are not sure. She is in ICU and will remain there for at least 4-5 days. The baby is doing well and sleeping so John went home to try to catch some rest.I think he will be surprised how tired he really is....what a day the happiest/scariest of his life. So I doubt I will get any more updates today unless (God Forbid) something happens , but I will keep you posted. Thank you so again much for all the wellwishes and thoughts . It mean so much to us to have great fiends and family to help us through these things.....
xo

Just a quick entry to ask anyone who is reading this to please pray for our friends Terry and John. They had a baby boy this morning (healthy 9lbs 4oz 21" Jason Johnathan) but the Mom, Terry , had some sort of blood clot break free and travel to her heart which stopped, and she stopped breathing and is now listed in critical condition at the hospital. We are so saddened by this, they have been trying to have a baby for 13 years! It finally happned, and while she was pregnant they found out the baby had lesions of some sort on his brain, but somehow a miracle happened and they were absorbed by the 6th month and all has been well ever since.Now this happens almost two hours after the baby was born, so scary!!!
I will update the site as soon as I know more. Thank you all so much .

Hi,
Hope you all had a good week. Jordan and I got home late last night from our trip to TN for cousins' Nate and Kyle's Christening. We had a lot of fun and enjoyed the trip very much . The drive down was a lot of fun too especially for Jordan, who enjoyed being chauffeured while he looked at all the sights! We stopped in Virginia and he loved the hotel and eating at TGIFriday's too :)

The Christening was very nice and we had a wonderful day for it weather wise. It was also Kyle's birthday so then after church they had a party for him and it was nice to really spend some time with Eileen and her family, our new extended Tennessee family, as well as Aunt Jeanette and Uncle Richard :)
We went and saw the Chattanooga Choo Choo, some wonderful waterfalls, and lots of beautiful countryside. It is amazing how pretty everything is down there!

The ride home was not quite as much fun as the Hurricanes that have been terrorizing the south followed us home and I had to drive through a bit of stormy weather,but we made it and Jordan was very happy to see his Daddy again ( I must admit so was I haha).We did get to stop at Bristol Motor Speedway where they have NASCAR races and that was fun , so the trip home wasn't all rain and gloom thankfully :)
That is our trip in a nutshell and I have a million things to do to try to get settled in again so I will end here.
I am adding some pictures (of course) hope you like them.
Take care

Hi,
Hope you are having a great summer!We have been very busy lately, but I figured I had better update this page while I had a few minutes. We have been to the Aquarium in Camden this past week, what fun! Today we went to a picnic for families with small children who are affected by heart conditions. It was nice to meet a group like that in a non hospital setting and have fun. It was a perfect day weather wise and we all had a lot of fun.
Jordan had his 2 yr old check up the other day (a little late but hey ...) and he is doing perfectly. He is good to go on shots and everything until he is like 4 or 5 for kindergarten so that is a relief, although he will need a flu shot every year, but I have to get one too so it should be no big deal we can bond and get our shots together haha.
Other than that we have a lot coming up with our trip to Tennessee and will spend this week getting Matt and Greg ready for school , I need to go to the dentist, new tires on the car etc etc so it shoudl be fun. We are leaving on Thrusday Sept 2nd so we have about 10 days to get our act together.
Health wise all is well with us and all of our friends right now. We have added a new baby friend Gavin that our friends Walt and Cheryl had, and a new cousin named Hunter that Bob's niece had last week.
So, now we just wait for Florie to have her baby and Bob's friend from work is having one about the same time as Florie so after them the babyboom of 2004 should be over :)
That is all I have for now. Thanks for checking in .
xo

Hi,
We hope you are all doing well and enjoying your summer. It has been a busy month or so for us. Bob's work had a company picnic,we have been to a birthday party,and the Camden County Fair.The picnic, and birthday party are in the pictures album. Jordan and I have also been to see jugglers, a puppet show and to his very first official "playgroup". All of which were fun.
Everyone is doing fine and health wise all of our friends seem to have settled down into routines as well. Rebekah has been home for a week or two now and she is doing fantastic. Thankfully all things are good here,and we are getting ready to go to Tennessee again in a few weeks for cousins Nate and Kyle's Christening, which will be nice, we can't visit enough!
I guess that is all the news I have right now.Hope you all have a great week .
xo

Well, another Friday and time for an update :)
We have been kind of busy here lately. Jordan and I went to Wildwood for a day trip with overnight stay with Jeanine and Bobby, which was fun. Jordan loves playing with Bobby and had a great itme riding the rides on the boardwalk and eating all the junk food!Then we went to Delaware to visit with Rebekah , who is still in DuPont. She seems to be doing ok , but these pesky fluid build ups on her lungs, and the ear infections that won't go away are begining to be a real bummer. We are all praying that she will be able to come home soon. But, the visit was a nice one and Jordan loves playing with Rebekah too (sense a pattern here? Jordan loves to play haha)Our friend Justin had his follow up from having his pacemaker removed and is free from Cardiologists for a year WAHOO! He is so happy about that since he has been seeing them every few months since he was 10 (he's now 16) so we Thank God for that good news.
I get to go to a Rick Springfield concert tonight with Jeanine, and another friend of ours Jenn, so 'Mommy' gets a night out hooray! So, I guess that is about it for now. I changed the photo album to include pictures of Jordan and Rebekah playing during our visit, and him and Bobby down the shore. Thanks for checking in and for all the continuous prayers.

HI,
Thanks for checking in. We have had some fun since we last updated. Our cousins who live in Tennessee came up for a visit, and we got to see them a few times, which was great! There are new photos in the album from the visit. Also, Jordan got a Pooh couch for himself, and boy does he love it! He loves to dive on it like he is jumping into a pool. He is goofy for sure.
On the health front we have all been battling colds, but are doing pretty well. Rebekah has had her surgery and is doing ok from that but, has a double ear infection (yes,again) and a bad diaper rash and her feeding tube site seems to be giving her trouble now too :( We appreciate everyone who prays for her, and if you want to send her a message the link is at the bottom of the page. Florie and Kearstin seem to be doing ok , Florie and her pregnancy seem to have settled down a bit for now (knock on wood, I don't want to jinx her) and the doctors have decided not to do the cleft palate surgery on Kearstin right now and to try to start therapy to feed her by mouth. That would be a huge accomplishment and we are hoping for the Blessing that it will happen for them.Also, our friend Justin had his pacemaker taken out this week and seems ot be doing great. He is 16 and a star on his baseball team, and looking forward to being able to use a microwave now that the pacemaker is out ha ha.
I think that is about it, (whew). So, I will update again shortly.
Thanks as always for keeping track of us :)

*************UPDATE AT BOTTOM**********

Wow, I can't believe how time flies. It seems like I was just getting ready for Jordan's birthday party and here it is a week gone by already! We had a great day for his party, it was fantastic weather, everyone was happy (which is amazing considering how many little ones we had) and Jordan had a lot of fun. It was so nice to see a bunch of our friends for a Happy occasion for once! I have added some photos to the book from the party. The play house Jordan's Pop Pop gave him was the biggest hit, all the kids played and played in it. It was an all around great day!!
On the health front, we are praying hard this week for our two friends, Florie(Kearstin's Mommy) and the Nester family, (Rebekah's family). Florie who is five months pregnant has been having some bleeding and has had tests to make sure there are no troubles , so we wish her the bestwhile we await results. Rebekah goes in for her third stage heart operation on Monday so please keep them both in your prayers.I have added their links to the bottom of this page in the "links" section, (good place for it huh?)
Other than those things, we are doing really well, starting to settle in to a summer routine and looking forward to a lot of warm weather fun.
Thanks as always for checking in and I will update again real soon.

*********UPDATE*********************
Florie has a bladder infection, that can be treated with anitbitoics. Rebekah had to postpone her surgery until July 8th due to double ear infections. There are new pictures in the album of Jordan with his new sandbox and Blue's Clues playhouse. The kid keeps us busy for sure. Thanks so much for checking in and as always for the prayers!!!

Hi,
Hope everyone is doing well. Jordan had his cardiologist appointment yesterday and everything, for once, went great! His oxygen levels are up to 95, which is almost "normal" it is the highest they have ever been, and explains why he has been so pink and full of energy lately the doctor says ;) The incision from his surgery is fully healed and his EKG and all his other tests were great so we don't have to go back until October,and if all goes well then we will only have to go twice a year frrm then on wahoo!!! This is great news. Other than that not a whole lotis going on. Anyway, I guess that is about it for now. I will update again soon.

HI,
Hope you all had a great Memorial day holiday! We didn't do too much . Jordan's Godparents had a little gathering so we went there,plus they had a cake for my birthday, so that was a nice surprise.We are also celebrating Jordan's big brother Matt's 18th birthday . Man time flies!
On the health front,we found out that Kearstin didn't do so great with her MRI, we don't know the results of the actual test, but the procedure gave her a devilish time and she had to be put on a ventilator and the whole nine yards, so if you could continue to pray for her we would appreciate it. Florie (Kearstin's Mommy)sent us a ultrasound of the new baby and it is fantastic, the baby is a girl and so far totally healthy. We are so thankful to God for that!
Other than that, we are waiting for our cardiologist appointment this coming Tuesday. I added a picture to the home page of Jordan in his new playhouse that his Pop Pop got him for his upcoming birthday . Boy he loves that house!So I guess that is about it for now.I will update after the doctor next week.
take care

Hi,
Just a quick update, not too much is going on. Jordan is entering his "Terrbile Twos" a few weeks early I fear. He has been very trying lately so it has been hard for me to keep up with the page, but luckily nohing is really happeneing so it is ok . We got his birthday picture done the other day and that is the new photo up top. We wished we could have gotten more but he was not at all cooperative, which for Jordan to not want to take pictures, you know he has to be cranky :)
Other than that we have been enjoying the warm weather, although today it is pouring!We are still waiting to hear the results of Kearstin's spine MRI, and Rebekah is still scheduled for June 21st for her surgery, so please keep those two friends of ours in your prayers.
Thanks as alsways for stopping by to check on us.
Jordan has a caridolgist appt in two weeks, so unless something happens between now and then I will probably just update after the appt.

Another week has passed, boy where does the time go? Anyway, this week was a good one. Not too much happened, which for this family, is a great sign haha! We did have a wonderful visit from Rebekah and her Mom Cathi, this week. It had been awhile since we had seen them and Rebekah has gotten so big and she is so smart, and such a little charmer! Her and Jordan played for several hours while me and Cathi got to talk which was nice. I wish we didn't live so far away as they live in PA, but at least it is within driving distance a few times a year. I put a picture of Jordan laughing hysterically as he and Cathi rode on his swingin the album. He had so much fun.
We also got final plans for the Beef and Beer Jordan's Godmother is hosting for us. It will now be July 31st from 7 to Midnight at the Gloucester Twp Democratic Club, so again, if you wan more info email me or call Jeanine at 856 312 0030. Other than that , things are pretty quiet, we have to pray for Kearstin especially this week as she has her MRI of her spine on Thursday. Thanks as always for checking in and for all the prayers. Have a good week!

HI,
Today was our two week follow up . I cannot believe it has been two weeks already! I guess we must be having fun because time is flying!!! The check up went great all the fluid is off of Jordan's lungs finally yippee!His oxygen levels were at 89 which is great for him too. We don't have to go back for a month, and if all goes well then it will get stretched to probably 6 months. Jordan was such a good boy (not that he isn't always but....) during his testing today and didn't fuss at all even when the doctor had to listen to him .I was so glad for him not to be stressed out by the whole thing.
So, other than that we are getting ready to start the summer and now that he is healthy it should be a busy few months, we of course will keep you updated as things happen.
On another note,Jordan's friend Rebekah has been scheduled for her third surgery on June 21st (which is Jordan's birthday funny huh?)so if you could please pray for her and her family to have an easy time of it I would really appreciate it.
:) Hope you all had a wonderful Mother's Day and for those of you in NJ hope you are enjoying this great weather!

Hi,
After all the drama of Thursday, we decided to use Bob's day off Friday to take some time to relax. So,we took Jordan to the shore. It was a fun day. We walked on the boardwalk, ate lunch in the Rain forest Cafe, which Jordan liked except for when he ate a lime off Bob's garnish (see photo) and had some fudge. It wa a gorgeous day and really a lot of fun.It also helped everyone take a nap when we got home, all the fresh air!
So, other than that our weekend was pretty normal. It is wonderful to be able to say that. Jordan is doing fine, his incision is almost all the way healed and he hasn't been given any pain medication since Thursday night, so I think we are well on the way to recovery. I thought I would send a positive note for once. We hope you all had a great weekend. Hope you enjoy the pictures I put in the album.
Take care

Well, you won't believe this but they have sent us home! The doctors here at the hospital did an ECHO and the spot that showed up on the xray was actually NOT fluid but fibrous tissue that builds up around the lungs after this surgery and is actually smaller than it was when Jordan was originally released. SO, needless to say we are thrilled (if somewhat exhausted but the whole thing) and have to come back in 2 weeks for another follow up. I will be doing the follow ups at the hospital from now on as that way they can do xrays , Echos or whatever all in one place instead of the day I had today at the hospital up home, then the dr's offfice etc. etc. So, thanks for the prayers, they really worked fast this time!!!Sorry for the worry , but hey what are friends for right ?? :)
I will keep you posted as the fun continues!!

Hi,
We have some not so great news. At Jordan's follow up appt today he had an x ray and his fluid on the lungs is getting bigger and blocking oxygen so we have been readmitted to the hospital.We are not sure for how long, there is a chance we may come home right away after they drain the fluid off, but the nurses called for housekeeping to make a room for us, so it doesn't sound like we are coming home tonight. There are several ways they can do this and different complications come with each so who knows we are still waiting to talk to the doctor.Anyway,I will keep you posted as soon as I can. I don't have Bob's laptop with me so I will do the best I can.
Thanks for the prayers I know you will be praying for us.
XO

Hi.
The weekend went well for us, I hope it was good for everybody. We didn't do a whole lot, but Bob brought home a set of table and chairs for Jordan , and we got a pedal car from Jeanine and Bob that we let him ride around. He loved the car and had so much fun pushing it around and kicking the tires, just like Daddy :) I put some new pictures in the album of the weekend. Health wise Jordan seems to be doing fine, he is having some discomfort at night. I think when he rolls around in bed, so he is still getting tylenol and Motrin, but that is not too bad I don't think for a little over a week after open heart surgery! He doesn't need the medicine during the day so I think it is a good sign. We have our follow up on Thursday and hopefully the stitches in his wrist will come out. They were put in for an arterial line for blood in OR and takes a while to heal so....also he needs a chest xray on Thrusday to check the fluid. So, hopefully all will be well until Thursday adn I will update after the appt Thursday afternoon. Thanks for checking in !Have a great week.

We have made it most of the way through our first day home wahoo!We spent the day catching up on errands, getting prescriptions filled and the like. So exciting ;)
We did visit with one of our neighbor's who is very nice and has been very concerned for Jordan over this whole adventure and she was babysitting her granddaughter Mackenzie, so Jordan got to play while we talked, so that was nice. Other than that, the day has been pretty normal. It is amazing to think what we all have been through in just a little over a week! Bob and I bought Jordan a big ball for outside and we were playing for almost an hour with him and he didn't get out of breath or blue once! Bob and I both noticed at almost the same time and both our eyes were filled when we realized our little boy could play and be like all the other kids now. It is a miracle really. Well, Jordan is napping and as you can imagine I have at least two more days worth of laundry to do . Also Bob wants to have a special dinner, so we are heading out to the store to see what strikes Jordan's fancy, here's hoping we don't end up with Cheese Puffs and lollipops for dinner haha.Oh well, it is the least we can do. Good thing Jordan likes veggies hopefully we can persuade him in that direction ;)
Thanks so much for keeping up with us.
Have a great weekend!
xo

We are home finally. It has been a long week and we are going to try to get setteld and go to bed early .Jordan is doing well and loving being home he is so much happier already! I will continue to update at least daily for awhile until his follow up xrays and stuff,so if you want to keep checking in we will be here. Thanks again for everything. I will start letting everyone know who expressed interst in visiting when we are ready too.
Good night.

ok, we are going home! Yay!! The doctors say Jordan's Oxygen levels are sufficient and the fluid has gotten smaller and they don't think there is any reason for us to stay here. He can be monitored at home for awhile to make sure the fluid doesn't cause problems or get worse, and he will have a follow up in a week for some xrays and stitch removal. So, I have to go and PACK . Once again, we are sooo grateful for all the prayers we have gotten over the past few weeks. It definitely helped. They told us to plan for at least 10 days to two weeks minimum and it has only been a week, so I firmly believe the prayers and love we have surrounding us helped Jordan beat the odds.
Thank you all so much and I will continue to update Jordan's page as we get settled.
Thank you all so much!!!

There is the first serious talk of discharge going on right now between the doctors and our nurse so we will see. Keep your fingers crossed and check in later for updates!

Tonight there is a little light at the end of the tunnel. Our nurse suggested that if all else checks out with Jordan tomorrow that maybe we can work on getting us sent home with an oxygen tank. While that is not the way I would like to go at least we would be home. SO, that is something I have to talk to the doctrs about and they don't come in all that frequently so we will have to wait a bit. They are going to do another chest xray in the morning to see how the fluid is doing so that will be our first part of the process. Thanks for checking in and hope you all have a good night!
I will update tomorrow.

Not too much new to report. The good news is they didn't think it was necessary to take a chest xray this morning, so that is good. Also, Jordan's fluid seems to be decreasing some so that is good too. He is back on the oxygen,(that we had taken him off of for a little while yesterday)becuase his levels of oxygen in his blood were at 82-84 and they want it to be 88-90 so........for now he has to stay on the oxygen. Jordan slept fairly well last night, and is in a little better spirits today, although he is still very aggravated with the nose thing and hates that he can't walk becuase of the IV in his foot, but things could be a lot worse. That is one thing that being here sure brings home. We always to try think of the people worse off than us, but when you are here you can't help but see it and it makes us even more thankful for the blessings we have.
Well I will close for now, Jordan is watching a movie and starting to fall asleep so I think this would be a good time to nap (for both of us haha)
I will update again later.

Good Morning!
We got some sleep last night finally (yay!) Jordan slept from 10 until 5 am when the technician came in to take his chest xray. Then he was up for an hour or so but did take a little cat nap until just a little while ago he did wake up for breakfast, but hasn't eaten yet. We are still trying to get his appetitie back , considering how much trouble we had with him eating when he was an infant the problems we are having now are not as severe, but still need to be fixed. Other than that I don't have any more news, the doctors are doing their rounds now so I haven't seen our nurse yet. When I learn something I will pass it along. I am adding a new picture to the photo album of Jordan "relaxing" on my bed last night. This shot has him looking the picture of comfort,what you can't see is that 5 minutes prior to me taking the picture he threw up in my bed yuck!Luckily the linen room is right outside out room ;) I also put in a picture of his new friend. Bob's work sent Jordan a massive balloon arrangement with a big soft bear to hug. It was so nice and unexpected it brought Bob and I both to tears. Everyone we know is so supportive and wonderful helping us through this rough time in our family. We as always thank everyone who takes time to care about Jordan.
Have a great day,I will update later.

******UPDATE AT BOTTOM*********

Good morning. I guess this is one of those times when no news is good news. Not too much is going on , Jordan had another rough night and didn't sleep much so he is kind of out of sorts today but it is not too bad (yet the day is still young haha) I have him in his stroller right now for him to eat breakfast and watch some TV, so that seems to have made him happy for now. Our wonderful nurse Trish is going to either try to get him taken off the oxygen or get us a portable tank so we can take him for a walk today . He won't actually walk as he still has an IV in his foot but at least he can get out of the room (me too yay) So, that is about it right now. I am still waiting for the xray result from this morning about the fluid on his lungs here's hoping it is getting better. I will check in later. Thanks for keeping up with us!

********UPDATE***********
Looks like we may be out of here soon. Jordan had his "discharge" ECHOCARDIAGRAM which is good,but his xray showed he still has a bit of fluid on his lungs (the dreaded plueral effusion)
so they are giving him some medicine to see if that helps, taking him of oxygen and we will go from there. It is looking good, we just have a little more to go. Thanks for the prayers and we hope to be home soon.
I will let you know as I learn any new things.

xo

Hi.Well, we found out today Jordan does have some fluid build up on one of his lungs, a common thing here. The doctors are giving him some medicine to try to reduce it and keeping him on the oxygen and he will have another chest xray in the morning. It is not very worrisome right now and his breathing is still fine,so they are trying to reduce the fluid before it gets worse. Other than that it has been a pretty quiet day. My Dad came to visit and Jordan loved that. He laughed and played with his Pop Pop for quite awhile this afternoon. It really perked him up. After he left Jordan took a 2 and a half hour nap so that was good too !
Jordan is resting comfortably right now watching his "Wiggles" video. He loves those silly Wiggles, those of you with kids probably can appreciate why I am on the computer instead of joining him haha. Anyway, thanks go out continually to everyone supporting us through all this. I recieved a few very nice calls today , including Florie, Kearstin's Mommy who has enough to worry about without adding us to her list-which makes her concern even more special. If you could continue to pray for Kearstin and Florie's pregnancy that would mean alot to me.
OK, well I will update again probably after Jordan's next chest xray result.
Good Night.

Hi,
Hope everyone is enjoying the wonderful weather we are having! We are doing ok today so far. Jordan had a kinda rough night and I didn't get much sleep :( He seemed to be a little uncomfortable and kept rolling over on his stomach, which of course was a bad idea ........so needless to say today he is a little cranky but hey who can blame him? Anyway, he should cheer up as his Pop Pop is coming to visit this afternoon so that should turn things around :)
I guess that is it for now, we are hoping to get Jordan off oxygen today which would mean we could take him for a ride in his stroller or wagon so here's hoping.
I will send another update later on when/if anything exciting happens.

WAHOO! Jordan is awake and in our room!! We are so happy, he is up and while he is not 100% by any means he is talking and hasn't cried or anything. We are so happy. He seems to be doing well with the pain medications they have him on (Motrin and Tylenol) and he sleeping again right now.
They have taken his Oxygen down to half of what it was to see if he will be alright without it and so far so good. He has now had all his tubes taken out except the IV and the oxygen so that is good, he hates things being stuck in him or on him, but hey who doesn't right? Bob actaully got him smiling and giggling a little playing with the balloon the hospital gave us, so that was a Blessing to hear his little laugh.I am going to put the pictures of him in the album, be forewarned he is in "hospital mode" and has the nose tube still, so just so you are prepared.
Thanks as always to everyone sending the well wishes and all of your prayers are keeping us strong throughout this ordeal, which no matter how well it goes it is still an ordeal to be sure, we cannot thank you all enough.
OK, well I am going to go. I will update again soon.

Hi,
Sorry I haven't posted before now, but believe it or not I actually was resting. We finally got a room at the hospital and Bob and I were able to get some sleep last night. The better news is Jordan is coming to our room today. We are not sure when but they took out all his drains and tubes and are just going to watch him for a bit then send him directly to us, skipping the "Step-down" area where kids can be watched a little more closely . This is FANTASTIC news, and says alot about how well he is doing. We have been Blessed beyond belief with how easy everything has gone so far. I don't want to "jinx" it but so far so good as they say :) So, I don't really have too much more info, but I think what I do have is good so I will close for now. Thank you again to everyone who is praying for us, and have been leaving such nice notes in emails and in the guestbook for Jordan,it means so much to us. I will let you know when we get settled with him in the room.
Take care

Hi,
Sorry I haven't posted before now, but believe it or not I actually was resting. We finally got a room at the hospital and Bob and I were able to get some sleep last night. The better news is Jordan is coming to our room today. We are not sure when but they took out all his drains and tubes and are just going to watch him for a bit then send him directly to us, skipping the "Step-down" area where kids can be watched a little more closely . This is FANTASTIC news, and says alot about how well he is doing. We have been Blessed beyond belief with how easy everything has gone so far. I don't want to "jinx" it but so far so good as they say :) So, I don't really have too much more info, but I think what I do have is goo so I will close for now. Thank you again to everyone who is praying for us, and have been leaving such nice notes in emails and in the guestbook for Jordan,it means so much to us. I will let you know when we get settled with him in the room.
Take care

*********UPDATE AT BOTTOM*********************************

Good news! Everything went fantastic in Jordan's surgery. He is out and in the CICU for at least a day or two to see if he has any complications and to make sure everything is ok . The surgeon said he did great and he is actually bleeding less than most babies do and for the first time since he has been born his hands and feet are pink and warm!It is so good to finally exhale, now that we are through the surgery the rest is a lot easier. I mean, there are still things that can go wrong but at least we have the toughest part through. We are still trying to figure out where Bob and I will sleep tonight (my car maybe?)and will let you know when we get settled if people want to visit, but for now it will be too hard, but thank you to those who have expressed interest in coming down.
There is one note of bad news I need to share, my cousin Eileen who just announced her pregnancy the other day has lost her baby. This is undoubtably a tough time for her and her husband and if you could please pray for them I would appreciate it.
thanks for everything. I will update soon.

*******UPDATE*******
I added the pictures I talked about to the photo album. Jordan is still sleping. Talk to you later.
xo

Good news! Everything went fantastic in Jordan's surgery. He is out and in the CICU for at least a day or two to see if he has any complications and to make sure everything is ok . The surgeon said he did great and he is actually bleeding less than most babies do and for the first time since he has been born his hands and feet are pink and warm!It is so good to finally exhale, now that we are through the surgery the rest is a lot easier. I mean, there are still things that can go wrong but at least we have the toughest part through. We are still trying to figure out where Bob and I will sleep tonight (my car maybe?)and will let you know when we get settled if people want to visit, but for now it will be too hard, but thank you to those who have expressed interest in coming down.
There is one note of bad news I need to share, my cousin Eileen who just announced her pregnancy the other day has lost her baby. This is undoubtably a tough time for her and her husband and if you could please pray for them I would appreciate it.
thanks for everything. I will update soon.

ok, well Jordan is in the OR now. Judi our social worker told us this would be a good time to go eat breakfast, (yeah right who can eat?)or to update everyone so that is what we ar doing. Jordan took the sedation really well and they have made the incsion and the surgery is underway. I don't really have much else in the way of info right now, except that it will be about three hours for him to come out. So, thanks as always for the prayers and I will update again as soon as I can.

ok, well we are now in Ronald Mc Donald house, all three of us. Jordan did great in his CATH today and is ready for his surgery tomorrow. We are all here becuase he did so well and there is no room for us right now at the hospital so needless to say we are very tired and have been running around all day so that is all for now. We should go in the OR around 10 tomorrow morning , so I will update after we hear something.Thank you all for siging his guestbook above, I am going to print it out when we get home and put it in his memory box so he will know how much he was loved.
Thanks for checking in .

Just wanted to let everyone know we are here, and Jordan went into the CATH lab at 2 pm. They told us he would be about 2 to 2.5 hours so we are waiting for him to come back. They are checking to make sure all of his anatomy is ready for the "Big Day" tomorrow. We appreciate all the prayers and well wishes. I will update again when I have more news.
xo

HI,
I just wanted to check in really quick to say Thank you to everyone who has been supporting us while we prepare for our journey of Jordan's surgery. The amount of love and well wishes we have been getting is amazing. We will be sending out emails and updating the website as much as I can depending on circumstances once we get to the hospital.
As far as the Beef and Beer that Jordan's Godmother is organizing, it is going very well and there is a lot of support already gathered for it. Again, if you want more info contact me or Jeanine at 856-312-0030.
Well, I guess I will end here for now, as you can imagine I still have so many things to do to get ready to go. It seems like no matter what I bring I always need what I don't have.
Thanks agian for all the prayers not only for us but for Florie, Cheryl and all of our heart families.
Hope you all had a Blessed Easter. I added Easter photos to the album.
Take Care and thanks for stopping by!

****UPDATE AT BOTTOM*********
Ok, we finally have a date for Jordan's surgery. He will be admitted on April 15th and have his pre-op catheterization and then the surgery on the 16th. It is going to be the open chest version so we are upset about that, but he needs the procedure if he is to survive so.....we really have no choice. This will be his third open heart surgery and he is only 20 months old! It is so sad to think of him suffering with the effects after the surgery, but hopefully he will bounce back quickly. I will keep the updates coming as news hits.
Also, Jordan's Godmother and a bunch of our friends have gotten the idea to hold a benefit Beef and Beer for some of Jordan's medical expenses (which are out of this world) . It will be on June 26th from 6pm to 11pm at the FOP hall in Stratford NJ. If you want more info please either contact me at my email listed on the home page or call Jeanine (Jordan's Godmother) at 856 312 0030. Thanks.

3/30/04
The photo above is for Easter (duh) and I added another one to the album. Thanks so much for checking in !!!Also, as well as Florie, Kearstin's Mommy, our friend Cheryl is pregnant too, and we would appreciate prayers for her to have a healthy baby. Thanks for praying for our babies and friends. :)

*******UPDATE AT BOTTOM*************

Ok, we finally have a date for Jordan's surgery. He will be admitted on April 15th and have his pre-op catheterization and then the surgery on the 16th. It is going to be the open chest version so we are upset about that, but he needs the procedure if he is to survive so.....we really have no choice. This will be his third open heart surgery and he is only 20 months old! It is so sad to think of him suffering with the effects after the surgery, but hopefully he will bounce back quickly. I will keep the updates coming as news hits.
Also, Jordan's Godmother and a bunch of our friends have gotten the idea to hold a benefit Beef and Beer for some of Jordan's medical expenses (which are out of this world) . It will be on June 26th from 6pm to 11pm at the FOP hall in Stratford NJ. If you want more info please either contact me at my email listed on the home page or call Jeanine (Jordan's Godmother) at 856 312 0030. Thanks.
OK, well Happy St. Patrick's Day,I will update again when I have any more news

************
The picture I changed above is of Bob and Jordan on Bob's birthday,Sunday. It was a quiet family affair,but at least now it is Spring yay!Also, our friend Kearstin's Mommy is pregnant with Kearstin's baby sister or brother,and after everything they have been through with Kearstin, could you please keep them in your prayers for a happy healthy pregnancy and new baby. Thanks!!

Ok, we finally have a date for Jordan's surgery. He will be admitted on April 15th and have his pre-op catheterization and then the surgery on the 16th. It is going to be the open chest version so we are upset about that, but he needs the procedure if he is to survive so.....we really have no choice. This will be his third open heart surgery and he is only 20 months old! It is so sad to think of him suffering with the effects after the surgery, but hopefully he will bounce back quickly. I will keep the updates coming as news hits.
Also, Jordan's Godmother and a bunch of our friends have gotten the idea to hold a benefit Beef and Beer for some of Jordan's medical expenses (which are out of this world) . It will be on June 26th from 6pm to 11pm at the FOP hall in Stratford NJ. If you want more info please either contact me at my email listed on the home page or call Jeanine (Jordan's Godmother) at 856 312 0030. Thanks.
OK, well Happy St. Patrick's Day,I will update again when I have any more news.

Hi,
The cardiologist called yesterday and the plan is to go ahead with the surgery. There is no one in the country who is able to do the Stent version of the surgery so we have to do it open chested.This is a very upsetting turn of events, but we need to get the surgery over with and done with. The surgeon who is doing Jordan's procedure has worked on Jordan before and has worked for a long time with the other surgeons who have been released from DuPont. So, at least we are familiar with him and the hospital. The situation with the other surgeons is still not been made clearer officially, but through our contacts at the hospital and other families we are friends with it seems to be all political and no one was harmed or anything, so at this time we still feel confident with our cardiologists recommendation and are going to go to Delaware to DuPont. We will have the exact date on Tuesday when the scheduler calls, but it looks like it will be the last week of April or thereabouts. So, if you could please keep Jordan in your prayers it would be great, we really need all the help we can get this time. The whole situation is so uncertain and Bob and I are filled with doubt over every little decision now,so any prayers would be great for us all to make it through this.
I will let you know when we have an exact date.
thanks and have a good weekend.

We finally got our article in the newspaper. You can search for it at Phillynews.com or look in the Sunday Philly Inquirer in the City and Region section. We still don't know what is up with the surgery, or the doctors ,but maybe now with the exposure something will happen. I will post when I have something new.
Thanks for checking in.

Hi,
Well, now not only is there a problem with the FDA and Jordan's surgery, but the surgeons who have done all of his previous surgery no longer are affiliated with our hospital! We are very confused as to what is going on and are being told nothing from the hospital, and are getting conflicting stories from other parents who are being told different things by different people. The Philadelphia Inquirer contacted me today for our story and another mother in my support group has been contacted by Channel 10 so maybe something will get done with some media attention. We are very upset by the whole thing but what we we have gotten is that it seems as though some kind of investigation is going on into the hospital , the surgeons and the procedure Jordan needs. There is still the option of having his chest opened to do the surgery, the problems are all surrounding the Catheter procedure but I am afraid of the whole thing right now , as we don't know if we can trust our hospital, surgeons or what!!!
So, I just thought I would let you all know as we were supposed to have the surgery by now and I know everyone is concerned. Thanks for all the supportive emails we have been getting and as soon as we know something concrete I will let you know. Our cardiologist, whom we do trust is at a conference and is supposed to get back with us in about a week to ten days so we will see what he says......
Other than that crazy stuff everything is going well.Hope you all get a chance to enjoy this weekend and the fantastic weather we are supposed to have (well in NJ anyway). I will update soon.
Take care thanks for checking in

Well, I heard from Dr. Gidding. As usual there is a snag. Evidently the FDA has held up what we thought was the final issue with the procedure Jordan needs. I am waiting now for the doctor to call me back and let me know for sure what is going on but it seems as though I may need to take Jordan to Ohio State University Hospital for the surgery!! I know it sounds nuts, but there is a surgeon there who is allowed (for some reason that I am not aware) to do the surgery through Catheter like we want so if it comes ot that we will be on the road :)
Both Jordan's doctors and Bob and I all want to avoid having to open his chest if we can, so this man who used to be a partner to Jordans doctor can do the surgery then so be it. It will be hard becuase Bob won't be able to go since he will have to stay with Matt and Greg,but hopefully it won't be a long stay......So, please keep your fingers crossed for the FDA to pull their collective heads out of their butts adn let us get this thing overwith!!Also we still have not heard from Kearstin's Mommy, so please continue to pray for her.
Thanks,I will update when we know more.

Today we are waiting for the cardiologist to call us back and find out what is going on with Jordan's surgery date. I am not looking forward to it, but it would be nice to know when it will be.Our little friend Kearstin is doing very poorly right now and is back on a CPAP machine, which is helping her breathe. She has had serious trouble coming of a ventilator in the past and we really would appreciate any prayers you could send her way. Other than that, I am changing the home page picture to that of Bob and Jordan on Valentine's Day, it is such a good picture of two of my favorite guys!
I will update again when I hear from Dr. Gidding.
Thanks for checking in.

Well, we made it through the weekend of Aunt Helen's viewings and funeral. It was really hard on us ,but no where near as hard as on my cousin Eileen. She came up from TN and stayed with us, she had to leave her sons home since she was flying and they were sick so it was doubly hard for her to be here without them and the support of her husband Chris. She made it through though very well, and gave a beautiful eulogy reading at the funeral. I am sorry to have lost Aunt Helen, but it was very nice to see how many people loved her.
Yesterday was also Valentine's Day,so we did exchange gifts and there is a new picture of Bob and Jordan enjoying the giant Hershey Kiss I gave them.
We did get an email from our friend Kearstin's Mommy today and Kearstin has been rushed to DuPont Hospital with unknown ailments causing her to not breahte, so please pray for her.
Thanks for checking in as always.

I just wanted to thank all of you who have been praying for my Aunt Helen. Unfortunately, she passed away this morning. She went peacefully and was surrounded by those she loved. It is so sad as we all love her so much, but she got to lead a full life and had many many joys. She turned 90 this past summer and we had a big party so she got to see everyone she cared about the most. My cousin Helene's birthday is today so if you could keep her especially in your prayers that would be great, as well as my cousin Eileen who now has to come back up from Tennessee,a trip I know she doesn't want to make. I really appreciate you keeping track of us, and keeping our whole family in your prayers. The photo above is Aunt Helen holding Jordan at his Christening.

Hi,
I just thought I would update a little on all the people we asked for prayers for in our last journal.... Kearstin had her surgery and went home the next day, and although her Mom seems to think she may now be coming down with something, we are praying that it is not so and are so happy her recovery is progressing. Cousin Nate had his surgery and is like brand new again, we are so happy for him to be over the flu as well. Our friend Justin won't know the results of his halter monitor exam until later in the week so we are still praying for that. Unfortunately, my Aunt Helen is not doing well at all and has been sent home from the hospital with Hospice care. It doesn't look like she is going to survive this latest round of problems. It is so sad, she has always been one of my most treasured relatives and I am so sad to see her suffer. I hope you all will pray for our family and her soul should she succumb.
Other than that unhappy news, your prayers are working and we thank you all very much.
The new photo on the home page above is from an 88th birthday party Jordan and I went to for a dear friend of our family and church. Jordan,as you can imagine was a big hit and thoroughly enjoyed himself as always.
Well, I am going to try to get some sleep.
I hope the weather isn't causing too much chaos for you .
Thanks for checking in and as always for the prayers and well wishes.

Well, not too much new is happening with us but I have some prayer requests to put out there if you all don't mind :)
My Aunt Helen has been having heart attacks for the last two weeks and had another one last night, and she needs all the prayers we can get. Also, our cousin Nathan is getting ready for his surgery on Monday,and our friend Justin is having a halter monitor installed Monday because his heart has basically stopped and his pacemaker is doing all the work and they need to make sure it is functioning properly or he will need other surgery, then we have Nathan's Grandfather who is having Cancer surgery on Tuesday, and finally our little friend Kearstin who is also having surgery on Tuesday! It is going to be a rough week!!! Please any prayers and thoughts you can give to these people we would appreciate as they have all been there for us going through things with Jordan and all his surgery and post surgery problems and we hate to see any of them be not well.
OK, well I am throughly depressed now I am going to go.
Thank you for the continued prayers.

p.s. I put a new picture of Jordan in the album, the one I sent to Channel 6 for Eagles Spirit week :)

Hi,
We hope everyone had a good New Year's holiday.
Today was Jordan's cardiologist appointment, and for once we got good news . The stents needed to do Jordan's surgery through a catheter rather than open chest have come through, while we are in a "trial group" we are going to be able to avoid an open chest procedure this time. WAHOO! We are so relieved, while this is still a very serious heart operation it is not complicated but the opening of Jordan's chest,so we are very thankful. The actual date of the surgery is still a minor mystery as the scheduler has to work out the details, but it will be in the next 6 weeks or so -before the end of next month our cardiologist said. So, Jordan is doing great other wise and all the tests they run at the appt came out good so that is a load off our minds too, since he really should have had the third surgery by now we were getting worried it would start to take a toll, but so far so good. Thank God.
Anyway, other than that things are quiet Jordan learned how to play with my remote control car last night and I put a picture of him enjoying his new favorite pastime. Hope you are all well. I will let you all know when we have an exact date, until then we are still asking for prayers for our cousin Nate whose surgery is the 19th of January and for my Aunt Helen who has had some medical issues resulting in hospitalization.
Thanks.
Take care

Hi,
Well we made it to Tennessee and back with no trouble. Jordan was an angel on the plane rides to and from and even though Cousin Nate was so sick,we had a good visit. Poor baby Nathan has the flu and is knocked out . He hardly did anything but sleep the whole time we were there. It is so heartbreaking to see a child you love suffer,but his Mommy and Daddy and brother Kyle (and Aunt Dorothy and Cousin Jordan)took the best care of him we could and by the time we left he seemed to be getting a little better, a least his fever had broken anyway.
Other than that it was a pretty calm visit, we got to catch up with each other as we hadn't seen Eileen and Chris in awhile. It was nice to be able to spend some real time together. I am putting a picture of Jordan and his cousin Kyle , whom he loved playing with in the book. We are hoping that the Carter's can come stay with us for a few days later in the year and since we know Jordan tolerates the plane so well we are also looking forward to visiting again in the nicer weather and when Nate feels better too, maybe in time for Tennessee's famous Strawberry festival,mmmm strawberries my favorite !
Anyway, hope you all have a safe and Happy New Year.
I will be posting an update regarding Jordan's surgery sometime after the 8th of Jan, as that is the date we go back to the cardiologist.
ok, well I am bushed so I am going to bed.
Happy New Year

Nothing much has happened recently, but I added new photos of us trimming our tree to the album, so I thought I would update and say Happy Holidays to all our friends and family who have been so great his year.
Jordan and I are still scheduled to go to Tennessee on Dec 26th for cousin Nate's surgery so please keep us all in your prayers. Also, our friends Rebekah and Kearstin who have been through so much and like Jordan, have more to go through.They all need all the prayers they can get.
Thanks for stopping by and have a great Holiday Season!!

Today we went for Jordan's Christmas pictures. We didn't make the trip to Santa because he just freaked and I figured ah what the heck he doesn't really know the difference yet so who wants a screaming picture?So, we found out that we will be going to TN on Dec 26th for Jordan's cousin Nate's surgery. We will be flying as Bob doesn't trust the weather for me to drive which is fine by me.So, I called Jordan's cardiologist to make sure flying is ok and other than that I guess we are ready.Jordan's surgery is still waiting FDA approval or Jan 8th which ever comes first so I guess that is all for now . I will update again if any news breaks.
Happy Holidays!

As of Saturday, Jordan has had his last flu shot, and should be done with shots now until he is like 4 so that was good news.
My cousin, Jordan's "Aunt Eileen" and her son are having some diffculties medically at the moment, so we ask that you pray both for them and for us as Jordan and I are going to go down there (to Tennessee) to be with them so it is our first big trip. It isn't too scary except that we won't have Bob with us as he has to stay home with the other boys and his job so....it is Mommy and BabyMan on the road. Wish us luck!
Other than that we are preparing for Thanksgiving, we have so much to be thankful for,all of our friends and family and the wonderful blessing God has given us in our Jordan.
As you can see by the picture above, Jordan is also getting into the Thanksgiving spirit!
Well, that is all for now, I will update when we get back from TN.
Have a great holiday!!

*********UPDATE AT BOTTOM*********

Wahoo!! Well, I guess Jordan got jealous of his friend Rebekah's walking and he has decided to take his first steps!!! We are so excited such a milestone! We were so lucky it was on Friday Bob's day off from work so he was here when Jordan decided to walk from the couch to the gate that blocks the kitchen! I couldn't believe it, I am always saying to him oh come on you can walk come over here, and this time he did it!!! It was very exciting and we are hoping to get some pictures of it soon, but as he likes looking at the pictures on the viewfinder of Bob's digital camera it is hard to get him to walk when he sees it,but we will keep trying :)
Everything else is fine, we still haven't heard form the FDA and if we don't hear we are still scheduled for his surgery to be in Jan, so that is all for now. Please send some extra prayers for our friend Kearstin who will be undergoing surgery tomorrow. Thanks as always for he prayers and for checking in .

*****As you can see from the new photo I finally got him to let me take a picture, thanks for keeping tabs on us :) **********

Wahoo!! Well, I guess Jordan got jealous of his friend Rebekah's walking and he has decided to take his first steps!!! We are so excited such a milestone! We were so lucky it was on Friday Bob's day off from work so he was here when Jordan decided to walk from the couch to the gate that blocks the kitchen! I couldn't believe it, I am always saying to him oh come on you can walk come over here, and this time he did it!!! It was very exciting and we are hoping to get some pictures of it soon, but as he likes looking at the pictures on the viewfinder of Bob's digital camera it is hard to get him to walk when he sees it,but we will keep trying :)
Everything else is fine, we still haven't heard form the FDA and if we don't hear we are still scheduled for his surgery to be in Jan, so that is all for now. Please send some extra prayers for our friend Kearstin who will be undergoing surgery tomorrow. Thanks as always for he prayers and for checking in .

Today is Jordan's 16 month birthday! Boy time flies when you're having fun :)
So, we went tot the cardiologist today and while Jordan is doing great the doctor says if the FDA doesn't get the stent figured out by January he is going to schedule Jordan for the "standard" procedure which would involve an open chest procedure. We are praying that does not have to happen, we would much rather the stent get final approvals so they could do his surgery through the CATH Lab, which just involves going in a leg vein as opposed to his chest......
So, anyway that is about it for now. No more doctors until January unless he gets sick wahoo!! So, I guess that is it for now. I put new pictures in the album.
Thanks for checking in.

OK, well Jordan had his follow up at the urologist today and that went well. He doesn't need to go back to see her until he hits puberty. Now, I thought when his pediatrician was talking about how he didn't need any more shots until Kindergarten that was planning for things that were a long way off, now this doctor is talking about puberty???Jeez, they will have me a grandmother before I know it ha ha.

Anyway, we have an appointment next Tuesday with the cardiologist to be updated on what the status of Jordan's surgery is, so hopefully I will have some real news then.

Other than that, we are doing real well, Jordan is such a joy and everyday we find something new and exciting he can do,it is really wonderful that we have been blessed with such a happy baby.
Anyway, I guess that is all for now, I will post more information when I have some.

Just a short note today as we are going to Delaware tomorrow for some follow up with Jordan's urologist. I still don't have any answers and am hoping to talk to someone tomrorrow. So , I will update when we get back from DuPont.
Take care, enjoy this Indian Summer weather :)

Well, here it is Sunday again. Still no word on Jordan's surgery. I am going to call the doctor this week to check in to make sure. Jordan had a pediatrican appointment this week and is now 25 pounds and 31 inches!
Jordan also has started drinking from a straw, so exciting! We were in Wal-Mart of all places when he grabbed his Daddy's soda and sucked right through the straw like he had been doing it all his life. So, of course we went right to the baby section and bought him a "big boy" cup with a built in straw. We are never ones to spoil the boy haha!
So, that has been our good news for the week.Our bad news for the week was that our 'Aunt Kim' died. She had struggled with Cancer and went very quickly and somewhat unexpectedly so that has been hard this week, but the memorial service was nice and we got to visit with Jordan's Aunt Eileen from Tennesse and her boys Nate and Kyle, so that was a silver lining to the cloud of losing Kim.
Anyway, it is getting so cold here now,and it has reminded me that I have to go and see about some halloween decorations. :)
have a great week. Thanks for keeping tabs on us :)

Well, it is Sunday again....I don't really have much new to report. We still don't have a date for Jordan's surgery, we are in contact quite frequently with his doctor and hopefully we will find out soon. It is getting to be a little stressful waiting, but I guess when it is meant to be it will be....
Our friend Rebekah, who Jordan went to her birthday party a few weeks back that the pictutres in his album are from, has her own website now (www.caringbridge.org/pa/nester) and she still has to have her third surgery too so if you could add her to your prayers along with our friend Kearstin (www.caringbridge.org/de/milligan) who has multiple medical issues we would appreciate it. These families have been a Godsend to us and it makes having Jordan's problems a little easier to take becuase we just think that without the struggles we have been through we would not have met such wonderful supportive families.
Anyway, I guess that is it for now. I will update when I have more news, or next Sunday.
:) Thanks for checking in .

Just a quick update, today is Jordan's 15th month birthday!! Who would have thought so much time could go by so quickly. Well, it has been an eventful year and a quarter to say the least!! Not too much is new with Jordan right now, we are still checking in with his cardiologist once a week until we can get the surgery date pinned down. The breathing situation with Jordan when he crawls and walks is about the same, so the doctor isn't worried so I am not worried. (Well, not so much anyway haha)
Other than that we are doing pretty much the same as always. I just figured I would update a little as so many people are checking in now,which we appreciate :)
Anyway, I will update again next Sunday,or whenever we get more news.

Just a quick note. I talked to Dr. Gidding today(Jordan's Caridologist) and he is trying to nail down information on when Jordan's surgery will be. The medicine for his heart that we tried which was supposed to get Jordan to not huff and puff so much when he crawls or walks has done little noticeable good, so we are discontinuing it. This also has spurred the doctor on to try to get the surgery done as soon as possible so that Jordan can try to build up his conditioning and not have to work so hard at excercise. This will be good, as the doctor doesn't think it is dangerous or anything ,his breathing that is, but that it would be nice if he could get more endurance.
So, that is all for now I will update again when we know more.......

Hi,
I know it has been awhile since I sent any news, and people have been
asking so...here it is :)
We went to the Cardiologist today and Jordan is tentatively scheduled for his last surgery at the end of the month. We don't have an exact date yet, the scheduler from the hospital will call me soon.The stent he
needs has been released by the FDA for limited use, and since he was already scheduled to have it he qualifies for it first. I am not really 100% sure on how the FDA rules work, all I know is his doctor says it is safe so I believe him .So as it gets closer and we have a solid date I
will let everyone know.
Other than that we are doing real well.His check up at the doctors was perfect so that is a load off our minds.
Jordan went to a birthday party of a little girl we met at DuPont who turned one this weekend and had a lot of fun! He also got an Elmo chair from his God Mother and he loves sitting in that, so that has been our
fun lately. I guess that is really all for now.I will update again when we know more.

Take care

p.s. there are new pix in the album

Today was Jordan's cardiologist appt. All went well,Dr. Gidding said Jordan is doing great and we can still afford to wait for the stent to be approved or whatever from the FDA for awhile longer. He said by the time Jordan is 2 he will have to have the surgery, but Dr GIdding said he would like to get it done as soon as he can, so hopefully the stent will become available again and we can be done with all this stuff.

Jordan now weighs 24 lbs and is 28.5 inches, such a big boy !

I put a new photo in the album, of Jordan standing up, he is getting really good at pulling up and standing by himself

That is all the news I have for now, I will update again as things happen :)

OK, well when has anything ever been normal with us right???I got a call from Jordan's cardiologist yesterday and due to some FDA actions, we have had to postpone his procedure anywhere from a few months to a year!!! We are unhappy that it has happened, but thankful that there are people watching these things so I guess it is a blessing and a curse at the same time. It is so hard waiting for this to happen, but at least we can take solace in the fact that he will be as safe as possible.
So, we now start the follow up office visits again,and have our first one next thursday so I guess I will update then.
Thanks for checking in!!!

Yes, we have made it through the first year!!! It has been quite a year to say the least. Yesterday was Jordan's first birthday and we were lucky enough for it to be on a Saturday so we had his party too. It was a lot of fun with all of our closest friends and family around to share our boy's big day. We love them all so much, they have been our rock of strength through the hard times we have gone through this year. There is a great new photo in the album of us on his big day. Other than that we are now planning to go to DE for his last surgery in about two weeks, so I will update then.

Not too much is new, we are through my birthday and today is big brother Matt's 17th birthday and then we are moving toward Jordan's one year! I can't belive how fast it has gone by!I guess it is true how they say kids make time go by fast. Once his birthday comes and goes then we have to start preparing for his next surgery. We pray that is goes well, it should only be about a three day stay this time and should be the LAST praise God it will be. Well, the little darling is sleeping now so I should go get ready Mommy and Daddy both have doctor appointments tonight, different from usually Jordan being the only one ha!
Thanks for checking in.

today was a moment in time,Jordan used crayons for the first time! Of course not very well, or for very long but hey it is something!! After all we went through with him in the hospital and all it is so wonderful to have "normal baby" things go on. I put a copy of his work of art in the photo album.thanks for visiting.

My first Mother's Day!!! I can hardly believe it,seems like just yesterday I was waiting for my little bundle of joy and now he has been here almost a year!!! Well, speaking of that, we got the date for his next and final (fingers crossed) surgery. It is going to be July 10th, a little later than I expected but with Fourth of July holiday and a vacation of one of the doctors it had to be pushed back, I guess it is good since that means it is not an emergency:)
Well, I added the photo Bob took of me and the baby on Mother's day,and will update as things progress towards the surgery . Thanks for checking in!!!

We went to the cardiologist today and everything seems to be going just fine. Jordan will have his third (and hopefully final) heart surgery in about six weeks. We have to wait for the scheduling department of the hospital to call but it should be in the start of July. So, we have a little time before we need to start preparing for that and get to spend his birthday at home yay! Other than that the visit to the doctor went well, Jordan weighs 22.5 pounds and is 30 inches long! Well, that's allf or now.Thanks for checking in

Jordan had his doctor appointment yesterday, and while he got two shots which he was very unhappy about, everything else was good. He does have a little thrush in his mouth now but no biggie, the doc gave him some medicine and it is almost all gone already. He weighs 21 pounds and is 29.5 inches long, such a big boy! We are nervously looking to next week at the cardiologist to see when we have to start the whole hospital dance again, well I guess we should be thankful that the surgeries are availabe. I have updated the photos in the album and that is really all for now. As always thanks for checking in......

We have had our follow up at the Urologist today and all seems to be healing with Jordan's testicle and circumsion just fine.

It is a yucky day with rain,snow and sleet so we haven't done much other than the doctor's visit.

So we are glad that the doctor is over, next Fri we have a pediatrician's appt and in two weeks we have the cardiologist appointment which will probably start the proceedings for Jordan's last heart surgery,so look for updates from those exciting days :)

Thanks for checking in..........

Things are progressing well here,all seems to be healing properly. The only thing we are now dealing with is Jordan seems to be having nightmares,or pain in his incision or something at night. The last two nights he has woken up in the middle of the night and is like wiggling around in his crib and is only calmed down when I hold him. So, I don't know really if it is pain, Bob says sometimes things hurt worse at night, which makes sense or it could just be a phase -who knows. That has been the worse part of all this medical stuff, you never really know what is bothering babies and it is so hard. Last night I broke my own rule and brought Jordan into our room to sleep, I never wanted to do that but I needed us both to get some rest and that was the only way it was happening,so I guess all my parenting skills have gone down the tubes haha!Tonight I am going to have to be firm, and find out if it is pain or just normal baby stuff. If he waks up again like that I will try and see if he responds to some Tylenol then we will know-- maybe he has been overdoing it during the day and needs some more time to heal (I mean it hasn't even been a week yet). I guess Monday when we go back to the urologist for follow up we will know more. Until then we will do the best we can .......Well, he just woke up in the other room from his nap so that is all for now. Thanks for checking in.............

Ok, we made it through the weekend with no problems. I cannot belive this child bounces back so quick from things . The circumcision and testicle surgery weren't bad enough, but the surgeon told us Jordan also had a hernia on one side when she got in there! I didn't know, and the surgeon said it would have been hard to find on the outside, so she fixed that too. The covering that they put on his little pee-pee has already fallen off and now we just have a few days to a week of some swelling,(sorry guys) and we put Neosporin on it and that should be it. The other surgery site for the hernia and testicle problem,are covered in "steri-strips", which are like stitches made of paper that will fall off as well as his cut heals,so that is all he has left. Jordan only needed one dose of regular Tylenol yesterday ,and so far today hsn't needed anything. It is amazing. Well, I guess I will sign off for now, it is so cold here today (34 degrees) I may go make a snowman haha.

This child amazes me daily. He woke up this morning and it is as if nothing even happened.He has not needed the Tylenol and is fiesty as ever! I guess with everything he has been through , this one was no big deal. We are so relived to see him not be in pain, and now we have to be sure no infection sets in and we should be good :)
I had figured he would be too sore to do much today but it looks like I need to find something to do now haha!! I will update the page again in a few days unless something interesting happens before then .

OK, we are home yay! The surgery went well and while it was nerve wracking for us to be back at the hospital where we spent so many days, it was nice to see the nurses and we got to visit with two families we have been keeping track of from the support group, so that was nice too. Jordan is still pretty groggy and I suspect him to be sore so we have the Tylenol ready for if he wakes up and acts like he needs it hopfully he won't but you never know.....Other than that everything went real well, as I said before. As for me and Bob, we are glad to have this over now just one more heart surgery and we will be all done yippee!!! Well, as you can imagine I am bushed so I am gonna try to get some shuteye. Thanks for checking in.

Well, Jordan is out of surgery.Everything went well, he is still sleeping and will for awhile, but the plan is still to send him home today. His poor little pee-pee looks so sore, I am glad they are giving us Tylenol with Codeine to take home. Other than that everything seems to be ok with the rest of the procedure going well. As long as he eats and urinates when he wakes up we should be home by this evening.Here's hoping, thanks for checking in.
I will update again when we get home,or if something else happens before then (not that it will fingers crossed!!)
more later.........

Today was Jordan;s 9 month "well-baby" visit to the pediatrican,all seems to be well. We are still planning on the surgery on his testicle and his circumcision for next Friday (3/28/03) so , we will see how that goes.We have two families we are emailing that are at DuPont now, and one of the babies is not doing so well so we are asking everyone who prays for Jordan to also add, MaryBeth and KAtie to their prayers,thanks.
Not much else happening, Jordan is now the proud owner of three teeth that's right I said 3!! The doctor pointed out to me his bottom tooth is coming in next to the two that are already there, so I guess he will have all his bottom teeth in before those pesky top two break through although they are trying to come in now too. He also weighs 20 pounds now and is 28.5 inches long,puts him right about in the average for both, so that is good. That is all for now, (I also put in new photos.)

We finally have a date for Jordan's urologic surgery. It will be March 28th. So, we have about three weeks to worry :)
It should not be a big deal, but any time you go under anesthesia it is a concern,I will feel better when it is over that's for sure. Things otherwise are going well,I will update things as it gets closer to the surgery regarding times and all that specific stuff.

All is still going well here,we are still waiting the doctors to get a time for Jordan's Urology surgery,but other than that everything is pretty quiet.Jordan met our friend Cheryl's little girl who is six weeks old yesterday and he was so cute with the baby touching her head and all, I can't wait to get the photos of that back. Speaking of photos there are new ones in the album. Enjoy!

All is still going well here,we are still waiting the doctors to get a time for Jordan's Urology surgery,but other than that everything is pretty quiet.Jordan met our friend Chryl's little girl who is six weeks old yesterday and he was so cute with the baby touching her head and all, I can't wait to get the photos of that back. Speaking of photos there are new ones in the album. Enjoy!

Not too much new to report, Jordan has had his 8month birthday and has finally gotten over his virus yippee! We are still waiting for a schedule for the urology surgery,but it should be soon. Our little friend who was in DuPont and not doing real well finally got to go home, so we are celebrating her arrival!!!Other than that things are quiet, and we are just waiting on that warm weather.
:) I will be putting new pictures in the photo album soon, I have to get them back proably by Friday so check back often :)

The time has come....Jordan has his first non-heart related sickness :( He has the virus that has been going around. The poor little guy must feel terrible, he is very cranky, and while he tries to play and be happy it just wears him out, so he is sleeping alot and thnkfully still taking alot of fluid, so the doctor says he should be fine in a few days. I guess it had to come sooner or later, but I was hoping it would be later. Other than that we are staying in becuase of the snow on top of being sick makes outdoors NO FUN!!! So, we are hibernating until Spring for now. :)

We have been to DuPont and everything seems ok for the urology procedure Jordan needs. We are just waiting for a scheduler to call us and figure out when is a good time. Other than that all is well and quiet.

Just a little update, we have to go to DuPont on Wed to see the urologist for a follow up procedure Jordan may need. No big deal and it will be out patient stuff,but still just thought we would keep everyone up to date.
In general, things are good Jordan now has TWO front teeth (on the bottom) and is chewing everything (and everyone) in sight :)
He is doing really well, and we are looking forward to warmer weather to start getting out more and having as much fun as we can!!!

We had a great Cardiologist appointment today, don't have to go back for three months YAY!!!Everything seems to be going great and we are looking at June or July for his next procedure, hopefully through a catheter and not an open heart. There are new photos is the album too by the way.

We have a new TV star in the family! Channel 6 is having a Eagles Spirit Drive so we emailed them the photo of Jordan in his little runnning suit looking like a future running back, and they put it on the air last night on the 11 oclock news :) We were very shocked and delighted to say the least. Other than that brief brush with fame it has been quiet around here, for once and we expect tomorrows doctors appointment to be a good one,if anything changes an update will be forthcoming.

The New Year has come and we are sure hoping for a better one than last year! Other than the arrival of Jordan,and his making it through all his hospitalizations not too much else went real well in 2002, oh well you win some you lose some right? The family had a quiet New Years' Eve, we went to Jordan's Godparents house for a few hours, then home for a quiet midnight celebration, surprisingly enough Jordan almost made it, he was awake until about 11:45,so close!!! Oh well, maybe next year :)

Jordan has had his first Chirstmas! We were all so happy to be out of the hospital and home in time. We had a very nice day, both Matt and Greg (Jordan's older brothers) and the baby had a good time opening their gifts, and visiting the Grandparents and all the stuff you do on holidays. This year was extra special for me and Bob as Jordan has made our family complete and this time of year being all about family it has made us realize how blessed we are. There are new photos in the photo album from Christmas,and we are now looking forward to New Year's Eve,we doubt Jordan will be up for the "ball dropping", but with a six month old who knows he may be up and we may be asleep :)
XO

We had a great visit with our family yesterday at my cousin Helene's house, so many cute babies in one place don't know when I have seen such a cute bunch! Jordan fit right in and was at home with his cousins,aunt ,uncles etc. I put a new photo in the album of Jordan and his "Aunt" Eileen, so adorable! We are counting the moments until Jordan's first offical Christmas and hope everyone has a great one!

Jordan has gotten his first stamp of approval from the cardiologist yay! All seems to be well, his oxygen levels were good and his stitches came out, he does need to go back on his Lasix,(the blood pressure medicine)becuase he is retaining a little fluid, but other than that everything is good and we dont have to go back to him for a month. So, we are fully in the holiday spirit now and cant wait to share the holiday with the baby. Our cousin Eileen is coming home soon too with her new son so the boys can meet, which is very exciting for us too, so life is good right now and we hope the new year brings much more peace and quiet than this past one !
xo

We have made it through ou r first full day home yay!While Jordan seems to have caught a little cold he is doing real well. We are still amazed at the speed in which he recovered this time after all the trouble we had last time,but God has been very good to us and we can't wait to celebrate Christmas Eve at Church and Christmas Day at home,with the whole family as we will be having Matt & Greg too,what a greayt day it should be !!That is all for now,Jordan has a cardiologist appt next Thursday,so we will see how things go then.
xo

Well, I cannot believe I am writing this, but we are being discharged today!!! I am flabbergasted. jordan is doing so well, he had an ECHO-Cardiagram and all is well. It is fantastic and I am going to go pack !!!

Today has started on a good note,Jordan slept fairly well last night and finished the day off way ahead of what we thought he would eat! So,I guess things are progressing. Jordan still wants to be held all the time, but the nurses figured out a way to get his wires and stuff over to my bed area and we put him in his car seat and that seems to be good enough for him so that is where he slept,last night, tonight we will try the crib again,we shall see ;)
Other than that, no real new news, the fluid is slowly coming off him and other than a little bit of elevated blood pressure all of his numbers seem good, so for now we just hope to keep on this path of healing and will keep our fingers crossed to be home soon.
xo

We have gotten Jordan into the room with us which is a great step forward. All is going good, Jordan has a little bit of pain still, which is to be expected for a few more days, but other than that all seems to be well. He is eating, slowly but he is eating which is much better than last time, so there is hope that we may make it home before Christmas! I haven't gotten much sleep as Jordan has a severe case of "Mommyitis" and wants to be held alot more than usual,but I figure it is the least I can do for the little guy after all he's been through. Jordan is sleeping now, so I am going to try to sneak in a nap.
xo

Jordan has made it through his surgery very well. He is sleeping off the anesthesia now and is on quite a bit of pain medicine but he is breathing without a breathing tube since about 5:30 tonight, so that is encouraging.
He will be in the CICU for a day or two still, as things progress slowly with babies,but he is in the most capable of hands and the hard part hopefully is over now.He does have a lot of wires,tubes and gadgets connected to him which is kind of hard to bear, but he doesn't seem to be too ticked off by the whole thing yet, so I guess it is ok :)
We are going to keep praying for a quick recovery, as I am sure all of you will too (hint hint) and treat each day as a battle to be fought one at a time.
That's all for now. Updates will keep coming as things move along.
xo