Wednesday, June 18, 2014

Sara's medical update

Last December we met with Sara's urologist and developed a plan for her to have surgery this summer to repair her renal reflux and remove the remaining stones on the same side. In preparation for that, I sent a letter to the urologist in mid-April expressing some of my thoughts regarding tests desired prior to surgery. After a month went by and I didn't hear any feedback, I called the office to discover they had moved locations and never received my letter. I faxed it. I waited a week for the feedback that he wanted to schedule an appointment. By now I was feeling the stress that the surgery schedule was filling up and we would not be able to accomplish the "plan" before Kindergarten started. Another week went by before he was able to meet with us last Friday.

The conversation started by the doctor asking us what we have been told over the past 2 years regarding the possibility of a kidney transplant. I responded that Sara's nephrologist has told us all along that he would monitor her every 6 months indefinitely and if her kidneys cannot keep up as she grows, then a transplant would be needed.

He answered "Her kidneys will not keep up when she is an adult. She will need a transplant."

Shannon spoke for us when he said that was the first time it had ever been presented that definitively to us. "If" was now off the table, replaced by "when." Quite frankly, it took my breath away. I have a growing list of moments that I have experienced with doctors that are like a frozen moment in time which I can close my eyes and it lives within me like it was yesterday.

The challenge any doctor has in these situations is assessing each family and determining what level of communication is appropriate with them. Obviously they want to present things in the most positive light possible. But in some cases, by doing that, miscommunication can happen. We certainly feel that way and that things were almost misrepresented. We made it clear that with all we have been thru, we are a family that can not only handle brutally honest communication, but we welcome it.

At this point, the plan is to do nothing. Watch and wait. If he does surgery to fix the renal reflux, it will make the passageway smaller for any future kidney stones to pass and then place her at risk for an emergency situation. If he does surgery to try to remove any kidney stones, there is no guarantee he can get them all. And her kidneys are so thin, the surgery would be extremely risky and there is a good chance the kidney would not survive the surgery. Since a transplant is needed down the road, there is no point as long as her health is doing well. There is a concern that since we don't know why or how the stones started, her body could make stones in a new kidney, as well.

I am well aware that my God is big enough to heal her. We will never stop surrounding her in prayer for that. But I also know that along the journey, He will continue to guide us and protect us and provide for us and bless us. God could say yes to our healing prayers and He could say no. His answer will not determine my level of faith. I have no expectation for Him to meet my request and I refuse to throw a temper tantrum if that does not happen. Our intention as a family is to just live each day until we come to a road where decisions have to be made.

Baby girl, you are an overcomer! Wherever this journey leads us, I will always be by your side holding your hand.

20 weeks--it's a...

Yep, that's right--Baby Mo will be their little bro...

I had my 20 week doctor appointment yesterday, actually 20 weeks and 4 days, and we got confirmation of what we have known for 4 weeks. Another little boy will continue the legacy of the Mollenhauer family. The kids are super excited about having a new baby around. But apparently more excited about getting balloons than finding out if it was a boy or a girl!

The amniotic band is still present in an ultrasound. It has moved a little and we are hoping when we check back in 4 weeks that it will be completely gone. It is a little weird going to my appointments because the nurse asks me every time if I am doing an ultrasound this time. Shouldn't the doctor be determining that? Maybe I should get a fee for being part of my medical team! The challenge is that even if the baby got tangled, at this point, there is absolutely nothing we could do because the baby is not far enough along to be viable. We also found out just how rare it is--our doctor sees 1 about every 3 or 4 years.

Everything with the baby looks healthy so far. He is quite the squirmer. She was only able to get about 3 beats of the heart before he would move. After the third time, she decided to just measure off those 3 beats and the heartrate is within the normal range. The baby is measuring a week ahead in size. My blood pressure is good. This hot weather is really getting to me and slowing me down. The past week I have definitely felt the challenge of my age.

We do have a name picked but something needs to be kept a secret, right?

Sunday, June 1, 2014

First tee ball game

Initially I had both Adam and Sara signed up for tee ball but with Sara breaking her arm, Adam is participating solo and loving it. He is in the tan hat, standing next to Shannon in the blue hat.

He got a pair of baseball pants for his belated birthday. At 6:30am on the day of his next game, he was in our bedroom fully dressed in his new uniform asking what time the game started! He also got a tee ball tee, Shannon bought him some tee balls, and I took him to buy a bat--he had to have the lime green one!

I think his favorite part is just hanging out with other boys, although it is a challenge for him sometimes to pay attention and not goof around.

It is funny how ridiculously huge the batting helmets are. Half the time it falls down over his eyes while he is trying to bat and flops around while he is running.

The end of preschool

It amazes me how quickly the kids' first school year passed. To celebrate, they had a little program.

The kids had so much fun and worked really hard. I think they were pretty worn out, though!

For those wondering, Adam is yawning and not singing his heart out!

Both my mom and Shannon's parents were there. It was hard for them to contain their excitement, especially Adam who kept waving to us.

I am so grateful to their teacher for her immense patience, passion, and outpouring of joy. It was a great first experience for me and I couldn't be more proud of how much both Adam and Sara have improved over the school year. Thank you Mrs. Ohlmann!