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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.

Monday, February 23, 2009

On the Surface!!!

Gator had an appointment today to see his Cardiologist and have a limited echo. He is eating well and weighed in at 25 lbs. Eating is one of our strong points as Homers. He is doing well in other areas and for this we are so grateful. We are so lucky to have him home and doing so well. The only little stress is that his function is pretty crappy. Dr. Su put Gator back on Dig- to hopefully improve this. He had always had non-stellar function, but it seems it has gotten worse. What this means is, we go back to see Dr. Su a lot sooner, we treat his blue spells with a little oxygen, and we try this medicine that will hopefully help with a little tweaking. We also talked about the Fontan. This is the next and last stage in his palliation. At this point we won't think about it until function is up and he weighs a little more. This is the reason that we need to address the function issues now. We don't want to cross bridges we haven't come to yet. We are so lucky to have great Doctors to care for us..... We have a Synigis injection later this week. One more in March and we are done with them....Hurray!!!!!!! Ry played with friends and loved every minute. Thanks for your help, friends. We are so lucky to have so many friends and family who care for us and are so willing to help us out. I won't forget your kindnesses and I am determined to pay it forward.... SO CALL ME!!!!!!

5 comments:

Lance and Raegan said...

I would love to do you a favor and have you want to pay it forward so PLEASE PLEASE PLEASE let me do something for you. Can I watch Ry SOON SOON SOON? Or something, anything? I just love you, you know I do. By the way, Gator doesn't have any blue spells, its just those darn suckers right?!

The Simmons Family said...

It sounds like they're on top of his heart function which is great! We're praying for you Gator that your function gets better and you can chunk up for the Fontan!

Heidi McMillan said...

We hope and pray that the medicine and Lord does wonders on his heart function. It makes me so happy to see him so happy...what kid wouldn't be with the greatest mommy and daddy. Stick in there. All our love!

Andrea said...

Brynn and Jeff-

You amaze me. I have admired watching you and your family ever since I was blessed to move into your ward and first learn about you through Relief Society announcements and later in person. Your strength, optimism, courage, and kindness truly amaze and inspire me. I love you guys! I'm keeping Gator in my prayers, Ryleigh too-it's hard to be the big sister. Thanks for all your help for us too. I love the way you said it (I may steal your words)-"I won't forget your kindnesses and I am determined to pay it forward"! I hope the medicine works for Gator.

Andrea

The Taylors said...

He is so cute I think it makes up for the okay function. Kylie is also on Dig after her glenn she is also on enalapril for her blah function. I am glad they are on top on things. I get so stressed out for card appointments. (one on Monday) I hope it function gets better, It is nice for me, to see your little one doing so well with okay function. Kylie has moderate TR also so looks like we are on shaky ground.