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Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Wednesday, June 20, 2007

hold me!!!!!!!

Alex Love love loves to be held.. Jeff and I take turns holding him while we sleep at night. He sure doesn't let us get much done. We had a pretty busy week last week with his immunizations and his cardio appt. and home health. This week hasn't been too different with an evaluation for his development. It is crazy and exhausting. But, this seems to be the new normal and I am not sure when we will get sleep again. We love having him home
This is Ry thinking she is the Dr.
She can't keep her lips off him.. She loves giving him kisses and telling me he needs me.

9 comments:

Anonymous said...

We just wanted you to know we think of you often and we are so happy your family is doing well. Your pictures are darling and we are greatful for this way that we can look in and see your progress. We pray for you and are continually amazed by your strength.

Anonymous said...

This will come as no shock to you - but Alex is so so so cute! Perfect little-handsome-male-babyish version of Brynn. :) Except Brynn has grown out of those adorable jowls and has a bit more hair. A bit. YOu guys make cute kids. I'm glad he's home. Sorry about the sleep. The things we do to get our little pieces of heaven in our homes... Definitely and unquestionably worth it, but man - at 3 am - you start to think you just might be going crazy. I think that craziness is required for parenting. Maybe that's why they start us off with the sleepless nights... Who knows? :)
Love you guys!

Anonymous said...

Both of them are adorable! I love the picture of Ry kissing Alex, what a touching shot! I'm glad to hear that things are going well. I'm sending :::restful sleep vibes::: your way along with hugs and prayers!

Joni

Anonymous said...

Alex is so sweet. He looks really good-what chubby cheeks!!! I am so glad he is home and doing well. And sleep is overrated, who really needs it anyway? We'll keep you in our prayers.

Love,JJ

Anonymous said...

What a little angel! I am so glad he is home also. You are really doing good and holding up great. Thanks so much for sharing! We love you guys!!!!

Anonymous said...

I just love these photos. I keep going back and looking at them. A photo can tell a million stories and I think they are just so darling. Love and miss you! Miss giving these babies kisses and hugs. They are just so beautiful! Nice work!

Anonymous said...

He looks great, you guys are doing a fine job and yes it is a busy time for him now that he's between surgeries and will continue to be until his final repair takes place. Having him home with the family and with Ry taking good care of him must be a pure joy.

Mike,Rebecca & Brinley Patton

Anonymous said...

Brynn, I love that last picture, well they are all cute of course! But the last one is so very artsy!

Anonymous said...

Brynn, he is so beautiful. Enjoy him wanting to be held, before you know it all the want is to get down and play!

Kami