Wednesday, July 1, 2009

Good news, Good news, Bad news



















Good news: This is the sight that greeted me when I went to get Susannah out of bed this morning. She was standing up in her crib all by herself for the first time! Her physical strength and her interest in movement has improved so much over the past eight weeks. And, a weight check at the pediatrician today has her at 17 pounds, 10 ounces, her best yet.

Good news: Darling Ben received a great job offer today. We haven't said much about it here, but he left his job back in March and if not for Barack Obama and the federal stimulus package's subsidized health insurance, we would be living in one of our parents' basements and totally overwhelmed by Susannah's medical bills. Instead Ben has been working like a dog to find another, better job and today he accomplished just that. He'll be working as a writer for an international nonprofit called The Hunger Project. The work is more creative, the commute is shorter and best of all, his supervisor is a Prescott College graduate! Or maybe best of all is that the job includes health insurance for the whole family -- the exact same health insurance that we've had for the past two years. It's such a relief, and enough cannot be said about how hard Ben has worked, how frustrating it has been, and how awesome it is that he will be taking a job that he is (1) excited about and (2) will give his family some stability. Ben, you are my hero.

Bad news: Though Susannah's behavior indicates she is feeling much better, her kidneys are still extremely dilated. The pressure on the kidney tissue (created by the hydronephrosis) continues to be just as bad as it was before the surgery according to our last two sonograms. It could just be temporary swelling from the surgery, but our urologist is concerned. So tomorrow morning we go back to Columbia Hospital, where Susannah will undergo a procedure called a nephrostomy. Tubes will be inserted through her skin and directly into her kidneys. They will drain the urine and take the pressure off the kidneys. She'll be under general anesthesia and we may have to spend the night in the hospital.

How long the tubes stay in and what happens next depends on what they find when they insert the tubes and run a few tests. The only good part about all this is that her blood work continues to show that her kidneys are functioning well. The danger is that that could change if the pressure on the kidneys is not relieved soon.

I'm being sort of general because it is confusing what is going on and what has been going on since we first got this diagnosis a year and a half ago. Everything varies; everything is one step at a time. We know she feels better than she did three months ago. We just have to get through this next procedure and go from there. Yes, we are frustrated. Yes, we are exhausted. Yes, it could be much worse.

I mean, how adorable is she?? Look at how proud of herself she is, and we are too.

6 comments:

Moonpie said...

Oh my, what an adorable, precious, strong baby girl! Hmmm, I love all the good news and hate the bad, and I have to say I as one parent would not mind all of you living in my basement.

My thoughts are with you all right now, perhaps the procedure has begun. GMP

Jill & Grandpa Paintbrush said...

Look at her - who would know she has been through such a year? We are thinking about her today and both of you Ben and Beth. Hope it goes smoothly and she can eat soon. A big hug to all three of you.

Betsy Dalgliesh said...

I am sending everyone of you a HUGE hug! I am sooo happy for and proud of you, Ben. Cant wait to hear more.
My heart goes out to you all for this current challenge. You are all so brave.
Thinking of you!

Goddess Bride said...

All of my good thoughts and good vibes are with you all right now. I hope the procedure went smoothly. Congratulations on the wonderful job, Ben! Sounds fantastic. Hugs and kisses for all the Aplins.

xoxoxoxoxoxo

aunt kelly

Anonymous said...

Beth and Ben- I love reading your blog, mostly because that little girl of yours is the cutest thing I have ever seen. Seriously.
I know you all have been through a lot, but I just wanted you to know that there are people all over the place that have all of you in our thoughts and prayers. Good luck in the next few days, and congrats to Ben!
-Lorri Eberle

R and L said...

first - MUFFIN!! She is just so adorable and I am so proud of her little self. Such a big girl!

Ben, Congratulations!! That is so so so fantastic. It sounds awesome and creative and all the things it sounded like you wanted! I'm so glad. And SO glad that this means that you will be in NYC a little bit longer. Just in time for me to return and be your very best babysitter.

Lastly of course, I am thinking of you always. I hope this new issue is just the swelling as you say and these sad little bags of hers don't have to trail her too much longer (tho she does pull off that scarf terribly well).

Miss you guys and mini muffin!
xoxoL