Cuddle Bunnies

So, our bedtime routine is lovely. We change diapers and put pajamas on. Then we read a story. Then we sing a few fun songs followed by some nice Primary songs. Then we say family prayer.

Mark finishes with Zachary. He tucks Zach in and talks about the day. Finally Mark either sings another song or tells another story. I love listening.

While they are doing that, I put Emma's nasal cannula on and start getting her night bag of milk ready.

When Zachary was a baby, I used to nurse him one last time and then hold him and rock him for a while. Emma does not like me to rock her. She is not a cuddle bunny the same way Zachary is. It kind of makes me sad. But I do love our face-to-face time getting ready for bed, she's my lovey bunny.

I love my babies, my cuddle bunnies or whatever you want to call them.

Emma Loves Rattles

Zachary never appreciated rattles. He never "found" his hands or feet.

But Emma, well, she loves rattles. Anything that she can get to make noise, that is joy. I love it.

She also still studies her hands and grabs her feet. I love watching her lay on her back and hold her hands or stick her feet in the air.

She is so stinking cute!

Zachary Really Counts

I was surprised tonight to find that Zachary can really count. To TEN. My dad called and Zachary wanted to talk to him. I told Zachary to count, thinking he would just count to three. No, Zachary counted to ten! I asked him to do it again. He did!

He needs help with five, but he pretty much has it all. And I didn't even know.

Appointments Scheduled

This morning I was able to schedule two more appointments for Emma. One is a scope to visually see how much damage Emma's reflux is causing. Concurrently they will do a 24-hour probe on Emma's pH levels to see how severe her reflux is. Doc said with older kids he could send them home with the probe. But Emma is so small and has breathing problems so we will be at the hospital the whole time.

Depending on the results, Emma will either have minor surgery to put a g-tube in her belly or a more invasive surgery to place the g-tube AND do a Nissen fundaplication. If we only have to do the g-tube, we have that surgery scheduled. If we have to do the Nissen, we will have to talk to a surgeon.more

Leg X-rays

At our last check-up with the geneticist, she ordered some x-rays on Emma's legs. It is common for NF1 patients to have bowing of their tibias. Emma may have bowing, but it is currently not severe. Our doc wants us to have a baseline to compare Emma's legs with and also to make sure Emma isn't bowing too much already.

We did those x-rays this morning after our meeting with the GI specialist.

From my un-learned eye, the x-rays look great. But, that's what I think.

Meeting with the GI Specialist

This morning we met with yet another doctor. This one was a gastroenterologist. We didn’t meet with him very long, but I feel good about the time spent there.

We talked about Emma’s current throwing-up habits. We talked about Emma’s current food intake. And, we talked, most importantly, about what we can do to help her.

The first thing we are going to do is a 24-hour study called a pH probe. I’ll have to be with her at Primary Children’s for the whole day for this. He said with older kids, they can send them home with the probe. But since Emma is so small and since she has breathing problems, he wants it done at the actual facility.

The other thing we are going to do is scope her esophagus. This is to find out how bad her reflux is damaging her throat. If it is serious, and if the pH probe also supports the evidence, then Emma might have what is called a Nissen fundoplication.

We are also planning on another surgery—to put a feeding tube in her belly. Directly into her belly. This will also allow us to take the feeding tube out of her nose. The doctor said sometimes the tube in the throat can cause gagging and retching. Now that he said that, I wouldn’t be surprised if that is happening to her.

The Nissen fundoplication is quite a severe surgery. He said he orders them only a couple times a year. He said he is pro-NOT-Nissen fundoplications. He would rather avoid them if possible. But, if Emma is a candidate, then he will order it.

The doctor was very sympathetic to our insurance needs. So, he said he will do all within his power to get everything done before the end of the year. Thank goodness!!!!

Zachary Counts

Zachary counts now. Not to ten, but to three.

"Tyoo, one, hwee!"

It just tickles me. He counts before his cars crash. He counts before we race. He counts. And I love it.

Baby Hands

I don't play with Emma as much as I would like or as much as I should. I feel like I am always pumping for her or feeding her or else I am taking care of and playing with Zachary. It really has been back and forth between the two little ones.

Two nights ago, though, while I was taping Emma's oxygen cannula on her face and giving her her medicine, I played with her in a way that I want to remember and need to do more often. I leaned in and let her hold my face in her little baby hands.

Her sweet little baby hands touched my cheeks and my jaw. And she was smiling and talking to me.

It was Heaven.