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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, May 8, 2007

Daddy's Still Here

Yes, I know once again I bow down to my wife when it comes to keeping up on the blog. It has been very difficult being back at work, and trying to focus on work when my mind and heart are up at PCMC with Alex. I am here with him right now, and he looks to me the best he has been since before surgery. I am so happy just to sit here and feel of his spirit, he is truly amazing and I truly do feel close to heaven being in Alex's presence. Today he had to go down to radiology and get a new pic line placed. They hope to take out some other lines tomorrow and by placing a new pic line that should allow them to remove those lines. We also hope to have him taken off the Ventilator again tomorrow, hopefully this time it will be more permanent, they just did a trial with the ventilator on spontaneous mode for 1 hour, and he seemed to do well we are just waiting for some blood results to see how he handled it.
Besides just being absolutely exhausted from all the emotional ups and downs we are doing very well. Brynn really does a good job at keeping us together and always looking for the positive. We just pray for this little guy and are glad that he has done so well for the most part. Jeff

7 comments:

Quinney Family said...

Jeff I know how difficult it is to have to go back to work and not have the entire family together. The experience does make you appreciate the family unit so much more and the stablizing force that our wives are in the process. You got a special family and we think and pray about you guys every day. We came across a quote from another heart family that we have adopted: "God gave us a child with half a heart to teach us to love with our whole hearts".

You guys are great!

Eric and Jennylin Quinney

Anonymous said...

You are both so very lucky to have each other to lean on. It's amazing how having a wonderful partner and family helps during trials like this.

Hugs,
Joni

Mike , Rebecca & Brinley Patton said...

Jeff I can understand how you feel,I enjoyed being with Brinley so much it was hard to leave her and go back to work...she was always on my mind. These kids are great blessings and we are lucky to be their parents, there is never a day that goes by that I take her life for granted. You guys are strong and we will continue to pray for Alex to come home soon.

Mike, Rebecca & Brinley Patton

Roberta Ribeiro said...

Hi Jeff!!I'm here praying for Alex, and I'm sure he will be home soon!!I've seen the picture of his foot and I'm sure he is a gorgeous little angel.
love you and miss you, Beta

Anonymous said...

Jeff and Brynn, our family wishes you the very best and we will continue to remember you in our prayers. There is such great comfort in the gospel. Christ has truly blessed all of our lives by being able to watch your miracle come about. Our testimonies and confidence in the Lord's infinite goodness are bouyed daily by our struggles and by the challenges of our lives. May the Lord continue to keep you all close and in good health. Whatever you need know that our family is available to you. The Skinners

Melissa :) said...

Brynn & Jeff,
We're still praying for all of you! Just wanted you to know that Gavin and Sophie are always including "bless Baby Alex" when they say their prayers!

Smile,
Us

Anonymous said...

Jeff you are an amazing husband, father, friend== could go on forever. I am glad my travels gave me the chance to meet you. You and your family are in our prayers. Best of everything for you guys.Mike Farnworth