Thursday, February 28, 2008

Precious Blake

In Loving Memory of Blake Hill
Rest in peace, baby boy.
We love you.
Our deepest sympathy to Troy, Whitney, Brandon and all who knew and loved little Blake. May God grant you peace.
The Monahan's
Kim, Justin, Dominick, Laura, and Ava

Saturday, February 23, 2008

Ava's Home!

Ava was released from the hospital today. Basically, the past week was wasted time. Yes, she is feeling better and is now tolerating her feeds. However, we left today with no real plan of care. It's almost impossible to get the doctors to listen. It's completely impossible to get them to act. Consequently, Ava is in the same situation she has always been. Wait and see. Oh, and did I mention she has now picked up a nice respiratory infection? Just another benefit of hospitalization. Oh well, at least she is home.

We were able to visit with Whitney and little Blake. Whitney is such a beautiful girl. Pretty, smart, kind, and totally devoted to making her baby well. I don't know how she finds the strength to keep going. The PICU is not a happy place. It's noisy and just plain scary. Yet Whitney puts a smile on her face and just does what has to be done. I am so proud of her.

A HUGE thank you to Amy! She drove all the way from Indiana to visit Blake and Ava. What an amazingly thoughtful woman. Unfortunately, when she arrived Laura and Justin had gone back to the hotel to rest because Laura was just too ill to sit with Ava. So what did Amy do? Played with Ava for nearly an hour so that the nurse could take a break! See what I mean?

I am an inconsistent blogger. I don't provide as many details as I should, and I certainly could post more often. Still, all of you put up with me. When times are hard the WS grapevine kicks in and everyone rallies around. I don't know many people who have such a wonderful support system. I can't thank all of you enough. Your advice and good wishes keep me, Ava, and our whole family going strong.

Much love to all of you!

PS: Tatum's mommy, Lisa, is crazy. I have witnesses.

Saturday, February 09, 2008


First of all, let me just say that I have had all I can take of Williams Syndrome. Happiness gene, yeah, right.

Second, I have been avoiding all of you because it breaks my heart to hear about illness and surgery and angry outbursts from our kids who are blessed with the aforementioned happiness gene. I am currently unable to make sense of a genetic deletion that can bless a child with a beautiful personality and the gift of empathy and at the same time curse him with life-threatening cardiac issues.

Third, my sweet Ava is in the hospital again. This time it was a nasty virus that took her down. She was an inpatient for a week at Sparrow hospital, went home for a day or two, and now is at U of M. The poor baby just cannot eat or drink. Consequently, she dehydrates really quickly and really severely. Her doctors were concerned that her organs were beginning to shut down, but it seems that that crisis has been averted. It looks as though she will be getting a j-tube, which hopefully will get the food where it needs to be without causing such chronic vomiting. I hope so, because she has been steadily losing weight. She is lethargic and just not "Ava". I'm keeping my fingers crossed that she will turn a corner soon, because she has been too sick for too long.

Last, but certainly not least, please pray for Whitney and her family. Things are as bad as they can get for her. Blake's prognosis is very poor. Laura and I feel very blessed to have met Whitney and Blake yesterday. She's such a sweet person, and little Blake is trying so hard to survive. Unfortunately, they are so far from home that it's very difficult for their family to be here. Thank goodness Troy is here right now, because Whitney should not be alone. I don't even know what else to say. It's just incredibly sad.

"Suffer the little children to come unto me, and forbid them
not: for of such is the kingdom of God." Mark 10:14

Friday, February 01, 2008

Ava's First Haircut

Great-grandma gave Ava her first haircut last weekend. Isn't it cute?