Kenley Garrett Robinson – Email Update

—–Original Message—–
From: G. Robinson
Sent: Thursday, August 02, 2007 9:19 AM
To:

Subject: Kenley Garrett Robinson

Kenley will be having her open heart surgery this Monday, August 6th.
She will be admitted to Shand’s Hospital Sunday morning to begin the pre-operative work. We’ve been told that the surgery will run close to 6 hours. We will try to get an update out, once she is off bypass and stabilized in the PCICU.

We appreciate the support shown by you- our family and friends. The care and concern displayed by so many of you is, well- overwhelming. I would be lying if I said that I am not scared.. however I know that, in the end, she will come out a healthier, stronger (and more awake) Kenley.

When Moses was trying to lead the people out of Egypt, he was afraid that nobody would listen to him. He expressed those fears to the Lord saying, “What if they do not believe me or listen to me and say, ‘The Lord did not appear to you’?” (Exodus 4:1).
My bible gives an-easy-to-understand-insight about each passage. When I went back to this verse, I saw where I had underlined the below comments:
Moses’ fear was caused by overanticipation. He was worried about how the people might respond to him. We often build up events in our minds and then panic over what might go wrong. God does not ask us to go where he has not provided the means for help. Go where he leads, trusting him to supply courage, confidence, and resources at the right moment.

This is our prayer on Monday.

Love,
G.

_________________________________________________
From: G. Robinson
Sent: Tuesday, June 26, 2007 10:16 AM
To:
Subject: Kenley Garrett Robinson

A team of pediatric cardiologist and cardiothoracic surgeons have reviewed Kenley’s case and are in agreement that she needs her hole repaired. She has been scheduled for open heart surgery the first week in August.

We’ve seen her struggle a little more recently and suspected that this would be the outcome. The thought of open heart surgery on a barely 17 month old is scary, however, we have to remind ourselves that she will be much better off in the long run with a properly functioning heart.

We went for a second opinion in October, and know that surgery is what she needs, and Shands Hospital is where she’ll be. This type of surgery, in the heart world, is actually quite routine. She will be in the hospital for 7-10 days.

We trust our doctors and more importantly trust God to get her through this.
I’ve attached a recent picture of “Miss Kens” and yes, she is as sweet as she looks!

Love,
Garrett
______________________________________________
From: G. Robinson
Sent: Tuesday, June 12, 2007 10:21 AM
To:
Subject: Kenley Garrett Robinson

Kenley was at Shands yesterday- a few weeks early for her regularly scheduled appointment.
She had her 8th echocardiogram in the past 15 months. Her pediatric cardiologist told us the hole between the lower chambers of her heart is no smaller. The left side of her heart remains slightly enlarged. At present, there is no sign of lung damage or heart failure. Dr. Paolillo does not believe her fatigue is related to the heart.

He will be presenting her case to the pediatric cardiothoracic surgical board at Shands for additional review. We will know more then.

Love,
G.
______________________________________________
From: G.Robinson

Sent: Thursday, November 30, 2006 5:51 PM
To:
Subject: Kenley Garrett Robinson

Last week Kenley was back at Shands for a follow up appointment. After discussing it at length, and praying about it for many nights, Mike and I had decided have the surgery there, if required.

We chose Shands for a number of reasons: the streamlined communication with the local doctors, the respected pediatric cardiothoracic surgeon that we later met, and most importantly the proximity.

After yet another examination and echocardiogram, it appears that the hole in her heart may be trying to close on it’s own!

This is what we have been praying to hear for the past 8 months! Dr.
Paolillo said typically these holes do not close independently, but if one were to close it would be Kenley’s.

People often ask me “how is she doing”?
And my response is good. She is slowly gaining weight, cognitively progressing fine and smiling all the while. After a month long respiratory infection/cold, she qualifies for an RSV shot which she will get at home every month November-March.

While she does not need surgery presently, she will continue taking her cardiac medications and will be closely monitored by her local pediatrician and two cardiologists (including Shands).
We were so THANKFUL to receive this news just days before Thanksgiving.

There are many things that Kenley has taught me to be thankful for. These are just a few I thought I would share:

1. God is who he says he is, and can do what he says he can do. He may
not always do them, but the ability is there.
2. Health is not a guarantee. I learned this once in 1998, but it has
been reiterated to me.
3. The value of a strong support system. We always knew we had great
friends, but did not realize the expanse of those friends until Kenley.
Thank you!

I think Britton says it best when she prays “God is good, God is great!”

Happy Holidays!
G
_____________________________________________
From: G.Robinson
Sent: Friday, October 20, 2006 10:39 AM
To:
Subject: Kenley Update

We spent the better half of Thursday at Riley’s Children Hospital and met at length with the pediatric cardiologist and pediatric cardiothoracic surgeon for a second opinion. She had all of her diagnostics again (EKG, chest x-ray, echo). The hole has not gotten any smaller and they are concerned with the amount of blood going to her lungs. The normal ratio of blood flow is 1:1. Kenley’s ratio is 2.7:1, meaning her heart is pumping 2.7 times what it should be. Their fear is that in the future her lungs could be damaged (pulmonary edema). The decision was made to reevaluate her in early December. If the whole still isn’t any smaller then tentative surgery has been scheduled for early December.

The surgery, obviously, isn’t without risks- 1 out of every 20 patients end up with a pacemaker. Looking it at from the other side, if we were to put surgery off (giving her heart more time to heal independently) and her lungs got damaged during that time, there would be more risk with the heart/lung machine and recovery.

It’s a tough decision either way- which is why it’s comforting to have a brilliant medical team to guide us. Mike and I still pray that the hole will get smaller. In the meantime, she will be getting an RSV shot to help fight against respiratory infection. The doctors reiterated to me how important it is during the winter months to keep her healthy (so much for my attempts at the nursery).

Kenley is still happy as she can be. She is crawling everywhere, cut two teeth, and spoke her first words while in Indy which were “Daa-Daa” (go figure). Will let you know if anything changes between now and December.

_________________________________________

From: G. Robinson
Sent: August 7, 2006 3:36 PM
Subject: Kenley Update

We are back from Shands and Kenley has gained enough weight to put off heart surgery for the time being. Her cardiologist was pleasantly surprised and said she is an “oddity” to what he typically sees.

Her doctors will continue to monitor her very closely to ensure she continues to gain weight and does not slip back into heart failure.

While open heart surgery is still a possibility, this is the best news we could have received today. We appreciate the prayers that so many people have lifted up on her behalf.

Thanks be to God for putting His healing hands on our baby girl!

Love,
G

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