Christian

Long Time No Post

2010-07-14T18:09:00.001-04:00

Well it has been a good while since I have posted anything, time has been my enemy. Much has happened so now it's time to play catch up. Lets go back to November and December of 2009. We spent most of the time with family. Christian had a blast.

Christian & Uncle Lewis playing the Wii.

( Uncle Lewis is getting beat by a 6 yrs old, lol. )

Daddy & Christian eating Candy Canes.

Yes, & playing poker, lol.

He kissed a Smurf!

Oh wait, it was the Candy Cane.

He LOVES Lego's!

Guess who.

So the end of the year came to an end with little complications and lots of memories.

2010 brought in a whole new set of fun. First up on the list was the Wiggles!

Christian had a BLAST!

Then at our January cardiology appointment the Dr. told us it was time to do the fenestration closure. There were very mixed feelings about it. It was yet another procedure that needed to be done where they would have to put him under, plus there were risks of even having it closed. So on February 13 Christian went in for a heart Cath and to have the fenestration closed. For the fist time in a long time, that was a short stay, just over night. He did well. We got the news that was his last surgery.... last planned surgery. WOOO Whooo!

We got back into town on February 15th and on the 16th we took Christian and his brother to the circus. WOW! We all had the time of our lives. We had to carry Christian everywhere cause of his Cath site, but he had so much fun. And by the way, we had purchased the tickets before we even knew he was going to have the Cath so we really did not want to throw $60 down the drain if we did not have to. I have some pictures somewhere, but where I do not know right now, lol. So I will upload them as soon as I find them and stick them under the "Pictures" tab.

Let's see, in the last few months we have been to the park, went swimming, moved, and many other things.

Look for those pictures as well under the "Pictures" tab soon as well. Well now it's July. Christian will turn 7 on the 23rd. Seven, He is still my little baby. He does not look like a seven year old that's for sure. He is now up to about 36 pounds. I believe now that they have his reflux under control and the stupid stomach virus is gone, he is starting to put on some weight. This year he will be going to school for the first time. I am sad that we can no longer home school him, but I am glad he will be able to get that experience. We also have a huge photo shoot coming up this Saturday, on the 18th at Water Front Park with our chosen photographer Rachael Donelson. It is being funded through the program inspiration for art, formerly known as The Littlest Hero's Project. If you have or had a child with special circumstances, you should really check this out!

Inspiration Through Art

We also have a few changes coming up, so look for an update soon.

I know I have been horrible at keeping up with the blog posts, but I am hoping that I can stay on the ball this time, wish me luck....

Oh yeah, one more thing. In April we went to our cardiologist for an echo. We have finally made it to having our appointments every 6 months! They also found a few areas on the echo they said they need to watch carefully. His Tricuspid Valve is still very leaky and the noticed something around is Aortic Arch, they said that may have to go back in, but for now they would just watch and see. So I will keep you updated there. Till next time.

♥ Hugs

Small Update

2010-01-13T16:07:00.000-05:00

OK, couple of things. I feel better, JohnMichael is now sick with the bug :( Monday I took Christian to the cardiologist and he said it was time for the fenestration closure. Said it would be a little while, but I just got the call and we have the date of Feb. the 15 @ 6 a.m. If any one has gone through this procedure, please let me know what to expect for my child, it would be greatly appreciated.

Winter is Here.

2009-12-14T00:08:00.000-05:00

The weather has gone south, the cold air has moved in, and so has the lovely breathing treatments. Since we have returned from Charleston last Monday Boo has been fighting a chest cold. I am telling you, if it's not one thing it's another. His spirits have been well though. Nothing ever really drags that boy down. Tomorrow we have to see the nutritionist, she may be mad at him, lol. The boy needs serious help gaining weight. You would think with his g- tube in he would start porking up..... but not him. He has developed reflux which kept him throwing up every feed. The have started him on 2 more meds. for it and they have also changed his formula. The have even upped his calories.... yet still he refuses to grow. I think he is burning through his calories. I have watched him closely everyday for the past few weeks, anything he does like playing the Wii or watching t.v, he is constantly bouncing, lol. He never stops! I wish I had his energy and ability to burn calories like there is no tomorrow. I should bottle him and sell him.

Christian and Porcha @ Grandpa's Bouncing

So we went down to Charleston last weekend because Great Great Grandma was sick and in the hospital. She was doing so much better by the time we got there, but she still looked sick. We also got to meet Porcha ( I am sure I spelled the wrong!), my niece and Christian's cousin. She is soo cute and always had a smile on her face. Christian was not sure of her the night we arrived, but the first thing he said when he woke up was "wheres the baby". We got to do a little shopping while we were down there with Grandpa. It's always fun spending time with him, he like to spoil :) Christian is really liking the trips down to Charleston just for fun and not having to visit the hospital for weeks on end. I'm enjoying that part too. Anyways, I will keep everyone up to date with the Dr. appointment tomorrow.

Night Night

Heartfelt Blogger Award

2009-12-11T16:08:00.002-05:00

A few weeks ago Ms. Jessica Twigg nominated one of my blogs for this award. I have been so busy with Christian, me being sick, and just plain life that I have been unable to update or even share who I think really deserves this award. So at this moment I am making time. There are only a few blogs I follow because there is only so many hours in a day and as a heart mom there is not many free hours in a day. But the ones I do read, they are the ones which bring me hope, strength, and encouragement.

Stephanie Husted ~ She does not update very often, but when she does... watch out. She writes these beautiful poems that makes you feel she knows you heart. She speaks what most of us have a hard time finding the words to say.

Jessica Twigg ~ I have been following her long before she moved to blogger. Her blogs never fail to bring me to tears and sometimes to my knees. Her struggle and pain has been felt because she is not afraid to share it. Her blogs are real and cut to the bone and reading her tears you will never be the same.

Shannon Carter ~ I love her blog. Her little baby is such a sweet boy. Her blog allows me to laugh after a long day. She brings the bright side of being a mommy and a heart mommy to light. Her humor can make even the grumpiest of hearts smile.

The Heartfelt Blogger Award is awarded to the blogs that make us feel all comfy or warm inside when we read them.

Here are the Rules for this award:

1) Display the award logo

2) Nominate up to 9 blogs that make you feel warm and fuzzy inside

3) Link to your nominees and leave a comment on their blog telling them about the award

4) Link to the person whom you received the award

I just wanted to stay home and take it easy!

2009-11-01T18:42:00.001-05:00

My Big Strong Boy! My poor baby has had to go through so much and it just seems it's never ending. Peace and quiet eludes us. Last night Christian some how pulled out his G-tube..... not all the way, but about 2 inches, enough to scare me. So I shoved it back in and called Greenville Children's Hospital and spoke with the on - call Pediatric Surgeon. I did a few things that he asked me to do with the tube and he said it sounded like it was in place, but he was too concerned and wanted me to bring him in anyways. So I called Eric and had him come pick us up, I took him back to work and he kept JohnMichael & Chase there with him and we headed to the hospital. We arrived around 6:30 p.m and sat in the waiting area for about and hour give or take a few minutes. When we finally got a room we sat in there for over 1 1/2 hours before we saw the doctor. The doctor looked and said it looked good but he wanted to have an x-ray done just to be sure. So we waiting for another 2 hours. Once they did the x-ray the nurse said she would call the doctor so he could review. He came into the room about an hour later and said I put it back in the right spot, but asked wondered if he was supposed to have a balloon that held it into place. Yes there is one there, he said not anymore. AGHHHH! So he had to go and ask the surgeon what he wanted to do. Needless to say we had to take the G-tube back out and then put another one in. It took 3 people to do so, he fought so hard. We finally got out after 1 and I knew I was not able to make another hour or so drive back home, so we went to Grandma's house and passed out. We got home this morning about 10 and he is doing so much better, but what a night. I spent my day taking it easy and relaxing but he spent his day just like every day.....playing. Will it be too much ask for a few days with out excitement?

God's Gift of a Child

2009-10-31T17:09:00.000-04:00

I'll send you for a little time A child of mine, He said, For you to love the while he lives And mourn for when he's dead. It may be forty or fifty years, Or even two or three But will you, till I call him back, Take care of him, for me? He'll bring his charms to gladden you, And should his stay be brief, You'll have his lovely memories As solace for your grief. I cannot promise he will stay, Since all from earth return, But there are lessons taught down thereI want this child to learn. I've looked this wide world over In my search for teachers true. And from the throngs that crowd life's lanes I have selected you. Now, will you give him all your love, Nor think the labor vain, Nor hate me when I come to call To take him back again. "I fancied that I heard him say, 'Dear Lord thy will be done. 'For all the joy thy child shall bring, The risk of grief we'll run. We'll shelter him with tenderness, We'll love him while we may And for the happiness we've known, Forever grateful stay. But should the angels call for him Much sooner than we've planned, We'll brave the bitter grief that comes, And try to understand.

Author Unknown

Update

2009-10-29T15:46:00.001-04:00

Update on Christian's Dr. Appointment yesterday. Ok, so winter is here and the weather sucks so it's back to breathing treatments every 6 to 12 hrs. He also seems to have a slight skin infection around his G-Tube site. To top that off... he has developed reflux and they think that's why he has been unable to keep his feeds down. So they added two more meds. They seem to help keep things down. Is it ok now for just a little time to slow down and get back to normal? Wait... what is normal again? I think I need a vacation!

Heart Walk & Reunion

2009-10-17T03:25:00.002-04:00

September 26th I went down to Charleston, South Carolina for the annual American Heart Association "Little Heart Walk". The weather was perfect, the company was better, and it was something my family and I will never forget. I was able to hold this little cute baby that I have been following since before he was born. I met moms that I will forever be grateful for. And babies who have defied all odds. It was a complete reminder to the wonderful hands of our Maker.

Christian, Dr. Bradley (his surgeon), & Cathy.

That night we attended our first Heart Reunion put on by Palmetto Hearts. It was so amazing. There where all these kids running around laughing and playing with out a care in the world. You looked at those kids and you had no idea the scars they were hiding, the surgeries they have been through, their battles they have fought, how very special their hearts were. To a stranger they were kids, but to us, they were and are blessings sent from above.

Christian fell in love with Ms. Piggy :)

The reunion was held down at the Children's Museum in Down Town Charleston. Everything there was hands on. They got to see how gravity worked with golf balls, how water played a part in everything from electricity to boating, they got to play a cashier and a shopper at the grocery store. Ate at a play diner and were the servers at the diner. They played on a pirate ship, went to pirate jail and sail the seas. They were knights is this castle and were kings on a thrown. You name it, they did it. Face painting, balloon animals, and even some cake and soda. They had it all! Parents had just as much fun as the kids, but they wore out easire... imagine that, lol.

It was just so amazing and I can not wait till next year!

Unbelievable! Will Reform Overlook Children with Disabilities?

2009-09-24T02:33:00.000-04:00

Please tell me why the president should be able to make decision about my child health, how can he know more about what my child needs more than his doctors?

WASHINGTON -- Parents of children with disabilities are worried about what the proposed changes in the health care plan could mean for their children.

As the sun beamed down on the U.S. Capitol building, more than a dozen families gathered outside to shine light on one issue in the middle of the health care debate.

They sent a letter to President Barack Obama and congressional leaders about their concerns and fears -- that a government-run health care plan would lead to rationing of care for children and people with disabilities.

"He's never spoken a word, and he probably won't, but he sings and he loves the Bible, and he claps his hands, and he's just a joy," said parent Mary Kellett about her son.

The group says legislation now working its way through the House and Senate could eventually lead to commissions that will decide which treatments are the most effective for patients.

"I fear such a system will deem his ventilator too costly or his wheelchair too rehabilitative," said parent Carrie Holt.

They worry that the pending legislation could result in the U.S. having a health care system very similar to Canada's.

Barbara Farlow, who lost her baby daughter to a genetic condition in Ontario, shared her story.

"No diagnostic tests had been done and a 'do not resuscitate' order was written before we had provided consent." Farlow said. "The hospital apologized and wrote that they could have done better."

Now Farlow's mission, along with the other families, is to see that the needs of the most vulnerable children in society are not overlooked or rationed.

Rep. Cathy McMorris-Rogers, R-Wash., the mother of a son with Down syndrome, is working on alternatives.

"There needs to be improvements to the health care system to meet the needs of families that have children and loved ones with disabilities," McMorris-Rogers said.

While the current legislation does not precisely call for rationing, the concern is what it will lead to down the road.

"Bottom line, these are concerns that we believe need to be addressed as we move forward on health care reform," McMorris-Rogers added.

"Johanna has continually reminded us to take every day as a gift from God, and not take anything for granted," said parent Eileen Benthal. "She is a reminder to us that life is much more than the temporal world, that there is an eternal perspective that will change the world for the better."

The Cardiologist Said.....

2009-09-15T08:26:00.001-04:00

Yesterday I took Christian to the Cardiologist. We were told that 6 months to a year after Christian had his Fontan, that they would need to go back in through a cath and close to fenestration. I was told there are many reasons why it should be closed. Mainly because with the fenestration open, his lungs do not filter out some of the bad things, such as blood clots and bacteria. A lot of blood goes to the brain and so leaving it open will leave him a little vulnerable. It's just one of those things you never know when it will hit, if it will hit, or how it will hit. There is no preventing it basically, except closing off the fenestration. On the other hand, closing the fenestration can increase his pressures which is not good. The best thing though, is God is in control and he knows what needs to be done and when it needs to be done. Right now, Christian can not have the fenestration closed even if we wanted to. He does not meet the requirements. He has too many issues from a closure stand point. Some good news is that his Tricuspid valve is still leaky, but no change, his heart function is good, and he put on 2 pounds! Two pounds may not be a lot, but it's a start. The G-Tube is working. I was sorta worried that he would rely on it too much and quit eating by mouth, but honestly I do not care either way anymore. As long as he gains weight and grows I am happy. He does have a bad rash and still has a bad cough so I am going to try to get him in to the doctors today. Other than that he is doing really good. I am so happy things are starting to calm down and we can just relax and live for a bit.

UP AND AWAY

2009-09-05T23:38:00.002-04:00

We are up and running!

i♥ CHD Babies

♥ Blog

♥ Babies

Must Watch

2009-09-02T10:34:00.003-04:00

I am sure some people will watch this video and wonder what God has to do with my CHD Baby. The truth is how can He not? My child is alive when they said he would not make it. My child lives everyday with only a half of heart. It's by God's grace and love that my son is able to brighten my days. How could I not believe in God? How could they not go hand in hand? When my child is laying on a bed and the only thing that keeps him alive is machines, how can I not go and find the God of comfort. Where else can you turn when all hope is gone?

I Will Make Your Heart Whole Again

2009-09-01T14:57:00.003-04:00

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 angels 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." Author unknown

My HLHS Baby

2009-08-29T12:36:00.004-04:00

Settling In

2009-03-06T12:10:00.001-05:00

Well Christian and I have been home for a little over a week now. We both are so happy to be home and things are getting around to being a little more like normal. The first few days were slow going, but by the third day he was up and running around driving his brothers crazy. He is eating and drinking and keeping it down. He has several pounds to gain back that he lost in the hospital, but he has already gained back one pound.

Christian seems to be so very happy at home. The only thing he dislikes about it is that he has not really been able to leave. He wants to go to Grandmas house. Hopefully soon we will be able to return to going out, going to Grandmas house, and church. As soon as every one gets through passing the sickness around we will be good to go ;)

Monday we had his cardiologist appointment, but it was canceled due to the snow. We finally made it yesterday afternoon. Christian is doing well. He has had some dizzy spells and they are not sure why and his blood pressure is a bit low, but other than that he is super and we go back in 3 weeks. Praise God!

WoooHoo!

2009-02-26T16:20:00.002-05:00

WE ARE GOING HOME! Christian has lost a little more weight, but they are confident things will get back to normal when he gets home. We will have to see his cardiologist at the beginning of next week to make sure Christian is gaining weight and not getting dehydrated. If we do need to be readmitted he can do that at Greenville Children's Hospital, but I am praying that we will not even have to worry about that. I laid down last night and I just prayed that God with be with me. Then there is this song that popped into my head and that became my prayer. It's John Waller's"While I am Waiting". Beautiful song, beautiful prayer, and that's what I help onto. God is so good and it is so nice to be refreshed in Him. Thank you all so much for reminding me of God's word and the prayers. I can not wait to see you all.

With Love In Jesus,Leeanne

He are the lyrics to the song.

John Waller

I’m waiting I’m waiting on You, Lord And I am hopeful I’m waiting on You, Lord Though it is painful But patiently, I will wait

I will move ahead, bold and confident Taking every step in obedience

While I’m waiting I will serve You While I’m waiting I will worship While I’m waiting I will not faint I’ll be running the race Even while I wait

I’m waiting I’m waiting on You, Lord And I am peaceful I’m waiting on You, Lord Though it’s not easy But faithfully, I will wait Yes, I will wait

I will serve You while I’m waiting I will worship while I’m waiting I will serve You while I’m waiting I will worship while I’m waiting I will serve You while I’m waiting I will worship while I’m waiting on You, Lord

This Stinks!

2009-02-25T17:30:00.000-05:00

We have been told so many times one more day. Today we got the same answer. Yesterday Christian had an X-Ray and an echo done. Unfortunately since his chest tube was pulled he has developed more fluid in his chest. He is still not keeping any food down. Also they have started counting his calories. Tomorrow they will repeat the chest X-Ray and do some blood work to check his electrolytes. They said at a minimum we can go home tomorrow, but that we could not go home until the fluid in his chest has lessened. A little set back. Christian and I are extremely homesick. Our emotions are starting to get the best of us. Please pray that that God will give us patience, understanding, that the fluid disappears, and that we would be able to come soon.

What's Going On?

2009-02-25T16:21:00.001-05:00

I have no idea what is wrong with Christian. Every time he eats any food he gets sick. They have no idea why either. First they thought ti was because of his feeding tube was in the wrong place, well now the feeding tube is out and he is still throwing everything up. Christian came to the hospital weighing his 33 lbs. that we worked so hard for, now he is down to 29 lbs. I know they said maybe tomorrow about going home, but now I seriously doubt that will happen. I am very frustrated because they do not know why it keeps happening and I am sleep deprived and lonely. Today had been a really bad day for Christian and I. He tried going to the playroom tonight, but was there a short time before he was ready to leave because his chest was hurting. AHHHH!

One Step Closer

2009-02-24T16:26:00.000-05:00

This Christian had his last chest tube removed along with his feeding tube. He has done remarkably well with eating and drinking today. He has eaten 2 pieces of pizza, about 6 ounces of chocolate milk, and several glasses of his Diet Coke. Although this afternoon everything decided to come back up. As long as he does not get sick any more we have a really good chance on going home tomorrow. Wooohooo! Christian is sooo excited. He is missing his Daddy and brothers and his Grandma so much, he is very home sick. Although we may be home tomorrow we will not be at church Wednesday night and more than likely not on Sunday as well. Christian is still healing and we can not risk him getting any type of cold or sick in any way. We will allow visitors, but no one sick and no children at this point. Christian looks good. Last night he told me "God fixed my heart and Jesus saves me". He gets it. God has blessed us so much. Glory be to God! Thanks for the continued prayers. We love you all so very much. You all are apart of our family and we have no idea what we would do with out you.

So Close to home.

2009-02-23T16:27:00.000-05:00

Christian is doing much better today. The past several days he has issues keeping anything down even with his feeding tube feeds. Finally they did an x-ray done and they found out that his feeding tube was way down into his small intestines. They had to pull the tube back twice before getting it in the right place. Now that it's in the proper spot he has not gotten sick at all. He has lost about 3 pounds, which does not seem like much, but for Christian its a bunch. Tomorrow we are hoping to have his last chest tube pulled along with the feeding tube. Christian will not be allowed to leave until he is getting at lest one liter of fluids in a day. So please keep that in your prayers.

Other than that he is still battling some chest pain, but mostly his spirit is up. He cries a bit about wanting to go home. I have tried to keep him busy so that way he is not laying around stressing. He loves to go to the playroom here. He is walking around and his bed sores have healed. He does have a rash from all the tape and adhesive, but that seems to be lessening as well. We are hoping to be going home by Thursday, but right now it's all depending on Christian and his will to eat and drink enough.

Thanks so much for the constant prayers, God has been so faithful to answer them all.

The Surgery Is.....

2008-12-11T16:28:00.000-05:00

OK, I just got a call from Dr. Bradley's (the surgeon) nurse. Christian is scheduled for his Open Heart Surgery on February the 11th. His work up will be on the 10th, so we will probably leave on the 9th. Depending on how well Christian does, we are looking at about a 2 week stay, maybe more, pray for less.

I was all ready to find out the date..... now I just feel sick to my stomach. Right now, Eric & I could use all the prayer we can get.

Doctors Visit

2008-12-08T16:29:00.000-05:00

Christian went and saw the cardiologist today. They also did an echo. Everything still looks good and makes him a good candidate for the surgery. His oxygen saturations are now down to 70 and if at complete rest 80. I still do not know the exact date, but his doctor says probably some time in January. Definitely with in the next 6-8 weeks. He will be calling me soon to see if he was able to get in contact with the surgeon and find out any more information. Right now the rules are to keep him on his breathing treatments and healthy. The last thing he needs right now is to get sick. Also he confirmed Christian is highly allergic to latex.

Honestly, right now the hardest thing is waiting. Not knowing how soon he will need the surgery. I know it is coming, but I think once I know the date I will be able to move past the whole shock of when and go to the preparing stage. The one thing God has been blessing me with is peace. I have tried to stay focused on Him and not the situation and that seems to be helping. Our family still needs prayers. This is not just affecting Christian, Eric, and I, but also JohnMichael & Chase. They do not understand much, but they are very worried about his surgery and remember very much his last stay in the hospital and they are scared. Eric and I have tried to assure them that he will be fine, but their young though.

Anyways, I will continue to keep every one informed as information is received.

Heart Cath

2008-11-19T17:04:00.001-05:00

Christians Heart Cath went fine. They did not have to coil anything and his pressures were amazing. The doctors have decided that it is now time to go ahead a do his last surgery. Usually the last surgery is the easiest, but they are considering opening his heart and trying to repair a valve that is leaking pretty bad, which will up the risks of the surgery. Since the Heart Cath Christian has had an allergic reaction to latex and it has lasted about a week or so. He has also been fighting a bad chest cold and is on breathing treatments 3 and 4 times a day. His spirit can not be taken down that easy. I know we have missed a couple of weeks at the church. We miss you all very much, but with Christian being sick we just have tried to stay out of the cold weather trying to get him well. Christian returns to the pediatrician on the 20 th so we will see. We hope to be back to church this coming Sunday. Thanks for all the prayers and ask that you continue to pray.