Thursday, November 19, 2009

This week

What a busy week! We started off Sunday at church. The twins and I made it to Sunday School. We nurses the majority of the time but we were there! We had our Harvest Lunch after morning worship. What a sweet time of fellowship!

Monday was spent in Grenada seeing clients. Bo and Carter headed to Memphis and receive the info in the last post. The rest of the week has been busy with house work, more church, homeschool and enjoying time as a family.

Today I came across a scripture that just seemed to speak to me. Luke 12:48b "Everyone to whom much was given, of him much will be required, and from him to whom they entrusted much, they will demand the more.". Wow. Just reaches in deep an grabs me. I am so very blessed. So much is required of me. God is so good. So amazing.

Bo and I are heading out tomorrow for my six week doctors appointment and then on to do some shopping for the kids Christmas. The boys will spend some time with Lyndee from church as Carter calls her and then some time with Kiki and Alli. Bo and I will take the twins with us...should be interesting!!!

Saturday we will take a moment as a family to discuss the importance of thanksgiving before we decorate for Christmas. We are looking forward to next week. Our Thanksgiving begins Sunday celebrating with the Rounsavilles and ends the following Sunday as we travel to spend some time with the shawa family.

I updating from my phone. I cannot post pics but will get some new ones up soon!!!

Believing
Lindy

New Carter Info

Hi friends,

Thanks to everyone who has offered their thoughts and prayers on behalf of Carter and our family over the past week. We do have a bit of new info to share with you all!

Carter and I (Bo) traveled to Memphis again this past Monday, Nov 16, to check in with our Cardiologist, Dr. Joel Lutterman. Our appointment was originally scheduled for December, but with the newest information that we received regarding the plastic bronchitis (see last week's journal), Dr Lutterman decided to go ahead and see Carter.

To make a long story short, Dr Lutterman is in agreement with Lindy and I that we should pursue a heart transplant. To our best knowledge, this is the last remaining option to strengthen Carter's heart. There seems to be a strong medical concensus that upon a successful heart transplant, the plastic bronchitis will no longer be an issue. Since the terminal prognosis was given last week, it seems our odds are better with the transplant despite all of the new "issues" that a transplant certainly will bring.So you may ask where are we in this process right now?

Well, Dr Lutterman is in contact with the transplant specialists in Nashville at Vanderbilt Children's Hospital. You might remember that Vanderbilt is where Carter and our family spent a large portion of time in 2007 dealing with major lung issues. I think that it was about 15 weeks that he spent in the hospital there in 2007. So we are pretty well acquainted with the hospital and the Nashville area. We are thankful that even though this transplant will be a TOTALLY NEW BALLGAME for us, we do have a level of comfort already established there at Vanderbilt and Nashville.

Now that being said, we obviously have never done this with two babies in hand, so despite all of the obvious challanges, such as relocating our family to Nashville for a minimum of six weeks (at least on a part time weekly basis), there are lots of other things to think about as well.

Please pray for us as we undertake these challenges as things become more clearly defined in the coming weeks or months (we have no idea how soon this all will come about). We will let all of you know as we have specifics, but in general, Carter has to be officially placed on the transplant list then wait for some poor family to lose their child so that a new heart can be donated. (So overwhelming) I am very thankful to know that our Holy Daddy is in control of all of these things, down to the last detail. As soon as we hear from Dr. Lutterman as to some specifics in meeting with the doctors from Vanderbilt to get this ball rolling, we will let ya'll know.

Blessings,Bo

Thursday, November 12, 2009

Catching Up

Hello,

Life here besides the Carter diagnosis....has been busy!!! The twins are such an incredible blessing!!! The older boys have adjusted very well to the transaction of babies. Carter has become a little more bossy and demanding and Spencer has developed the ability to bounce off of walls...but overall things have gone smoothly.

I have recovered well. I am blessed with good genes...so surgery doesn't phase me nor does it have me still for long. Bo is doing well. He is adjusting to less sleep then we are normally used to...so learning to take naps has come in handy.

Church life is going great. We are very thankful to be in our church and in this community. I am hoping to be able to do another ladies bible study in the Spring. Bo is knocking through the books of Hebrews and Ezra right now...good stuff...God is amazing.

Homeschool is slowly getting started back again. Carter is as always all go. Spencer is hesitant this time around....doesn't think it is necessary...we are working through it!!!

Bo and I are going to our first Ole Miss football game together since....I don't know before kids! I vaguely remember watching Eli trip over his feet when I was pregnant with Carter...not sure I have made a game since then! We have never been to a TN game so this will be fun for us both!

All four kiddos will be hanging with Nanna and Mommamack. The older boys can fend for themselves and there will be a baby for each adult!

I am not going to make any promises on how much I hope to come here more and update...all I can do is say stay tuned...there will be an update in the future!!!

Hope you all have a blessed rest of the week and weekend!!!

Blessings,
Lindy

Wednesday, November 11, 2009

Update on Carter


Dear Friends of Carter,
I am sitting here at my kitchen table and am listening to Bo and the older two boys rough house and play – their usual bedtime routine. I hear Carter’s breathing treatment going in the background. I look over and I see two amazing little bundles of joy snoozing here in the living room.
I wish I were coming here with some wonderful amazing news, however as is the case most often with Carter’s journey, we come with heavy hearts. I am laying out the outline of this update and Bo is going to intermingle his thoughts in with mine so it is a complete picture from us both.
I think back to April 12, 2004 when we thought our healthy second son was about to be born…what joy…what innocence we had…how innocent our families all were. Then I think about the NICU at LeBonheur. I think about that perfect second born of mine needing open heart surgery at eight days old. I think about the machines, and those precious nurses that had the privilege of dealing with hard headed me (Lindy). I think of the verse that just screamed to me – my Holy Daddy’s voice speaking, “I know the plans I have for you…not to harm you…to give you a hope and a future” Jeremiah 29:11
I hear my Holy Daddy’s voice saying those same words tonight in my ear as I sit here exposing myself to the world. What have I learned in 5 ½ years? That His ways are not our ways, His thoughts are not our thoughts and we have learned to rejoice in that. I have learned that Job and I will have a great chat one day if we ever take a break from worshipping Jesus.
As many of you know, Carter had a heart cath in May 2009. This was the heart cath that was supposed to make his heart function better and set up a better life for Carter. Many of you also know that instead of receiving news of improved heart function, we received a different outlook for Carter’s future with a diagnosis of Plastic Bronchitis .
Over the past five to six months we have been to numerous appointments with pulmonology and immunology and have had an Upper GI and a Bronchial scope…all in search of a glimmer of hope that this diagnosis of plastic bronchitis was not true.
Dr. Schumacher, our pulmonologist at Le Bonheur, saw Bo and Carter this past Monday. Bo went with a list of questions to solidify what we already knew in our hearts from the research we have done. If our Cardiologists are not able to come up with a procedure to drastically improve Carter’s heart function, and we have tried everything possible at this point short of a heart transplant, then Dr. Schumacher said that the plastic bronchitis will be terminal (life ending) for Carter.
Now, here is where I want to clarify something. Bo and I firmly believe in a Sovereign God. We believe that He set this world in motion knowing long before earth was formed the number of days each of us have (Psalm 139). Meaning all of our days, as well as Carter’s, are numbered by a Sovereign God. My Holy Daddy knew long before I fell in love with Bo how long our Carter would live on this earth. So Bo and I are well aware that we do not have to worry about when Carter leaves this earth.
Now, I am human, so please do not think that I do not think about what this means. I worry often…to the point of extreme tears while fighting away panic attacks. But I also can cling to scripture in Philippians 4:4-9 when it says to be anxious for nothing and take this to my Holy Daddy.
We do not know how long Carter has; only our Father knows that. We do know from the research that most of these children live on average about five years after diagnosis. I started noticing Carter’s symptoms in August of 2008. The length of time that he has left will be determined by how aggressively the disease progresses in his little body. Dr Schumacher was disappointed at how much it had progressed since he last saw Carter. He said that there had been noticeable changes to his lungs already.
We will continue living life just as we have since April 2004 – one day at a time, often one moment at a time. We will celebrate life every day and live like tomorrow is our last. We will not go through this life in despair but remember that the joy of the Lord is our strength. He is our refuge and our fortress.
We do desperately need your prayers. We need God’s strength and wisdom as we trudge forward in what is ahead. We do not know if he even qualifies for a heart transplant, which is the only option at this point to try to rid his body of the plastic bronchitis. He has many secondary issues which may very well disqualify him from even being placed on the transplant list. We do not know what medically can be done for Carter’s comfort should a transplant be out of the question. There are many questions left unanswered for us, but two that we do know are 1) the plastic bronchitis is terminal and 2)plastic bronchitis or not, God is still in control.
We will see Dr. Lutterman, i.e. Dr. Joel, Carter’s main cardiologist, in December. Hopefully, we can begin to lay out how we will move forward at that point. Please put him on your prayer lists and/or chains once again. If he has remained on them, please update with this new information. Prayer works! You absolutely CANNOT look at Carter’s life and draw any other conclusion as far as we are concerned. Bless each of you for checking on us. Blessed be the name of the Lord!
Bo and Lindy