Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, February 29, 2016

Let me see your tooth

Its very tough to get into Audrey's mouth. She is very good about letting me brush - even demanding requesting her teeth be brushed when I start doing everyone else's. But brushing is as much as she allows where teeth are concerned. She won't allow "inspecting" of teeth, or any kind of close look.

A couple of weeks ago I noticed Audrey and Asher both have a couple of loose teeth. Kids with Down syndrome have a tendency for their teeth to not fall out on their own, partly because many just don't wiggle their teeth like typical kids do. Thankfully Asher will let me wiggle his loose teeth, but Audrey is a big fat NO!

Tonight, while doing her range of motion stretches, I noticed she had one tooth sticking out of her mouth and ready to come out. I was able to pull it before she even knew what was happening because it was barely hanging on. She was fine with it, but like most kids, once she saw the tooth in my hand AND that she was bleeding, she freaked out. Oh she was M.A.D. at me!!!! But Daddy!!!! Daddy can make all things better and she let him clean up the what looked like a crime scene. Then it came time to check the other tooth. Yeah, she's not really going to let that happen. (when I wiped my mouth it wasn't because I was wiping off her kiss, but that her mouth was all bloody. Ewww) Audrey may be non-verbal, but she has no trouble getting her point across.

Thursday, February 18, 2016

Bits and Pieces, gained and lost.

I hate when the information comes in bits and pieces. Just give it to me all at once so we can figure out what to do, make decisions and all that stuff!!

Today Angela had a Hepatic Venogram (also called and IVC/Portal Venogram) The purpose of this procedure was to take a closer look at the portal shunt inside her liver as well as measure the pressure inside the portal vein. We have known its high, but how high? The procedure was done under general anesthesia. They put a catheter through both her neck and groin and ran the catheter into her liver and injected die so they could get another picture of the shunt. The doctor showed me the images and the pretty much mean nothing to me. LOL I can totally understand ultrasounds, but these make no sense to me, except where she injected the dye into the little veins. And they are little! Less than half the size they should be and unable to support even 1/4 of the blood flow they need to be carrying. 

When the portal vein pressure was measured, its is at 14. The radiologist explained to me this puts Angela at significant risk of vessel rupture. So much information. I do better when I have information in print so I came home and looked it up. 

The normal HVPG value is between 1-5 mmHg. Pressure higher than this defines the presence of portal hypertension, regardless of clinical evidence. HPVC > or = 10 mmHg (termed clinically significant portal hypertension) is predictive of the development of complications of cirrhosis, including death. HVPG above 12 mmHg is the threshold pressure for variceal rupture. 

But that's as much as we know. Now we have to wait to talk with Angela's medical team and hear what they have to say about this. What do we do with it? Can they fix it? Is it too big to be fixed? (the radiologist did not sound very positive about this based on the size of the communicating vessels) When we met with the liver specialist last week she listed the options as surgical fix, manage medically (with  the medications and protein restriction she is currently on) or transplant. We really do NOT want to manage this medically. Angela has lost huge areas of independence from her life. The drugs have caused her to have *major* GI problems that are very unpleasant to deal with, both for her and a caregiver, and she cannot manage it alone. She can no longer just go hang out with friends. She can't spend the night at friends' houses. She can't leave her school program campus (which I don't even remember the last time she was actually there) without a nurse with her. She really cannot attend anything or go anywhere, without a caregiver with her. She can no longer swim thanks to last week's increase of the drugs. She went from being able to spend time home alone to never being alone. From being dropped off at a social event to having a caregiver within eyesight at all times. Although she is taking all these changes in stride, we can see her sadness. She sees pictures of friends attending parties that she was not invited to that she normally would have attended. She misses being away from mom and dad and hanging out with her friends. She misses eating food. She misses school. She misses everything she has lost, and we miss it for her too. We don't want to "medically manage" this problem. We want it fixed. We want for her to have her life back. 

Saturday, February 13, 2016

On the beach

This trip wasn't about fancy. It wasn't about 5 star restaurants. I didn't pack any make up. We didn't pack and "nice" clothes, just our every-day stuff. The owner of the house in GA asked if we'd like to have some family photos taken. Wow! We have never done that. Ever. We opted for pictures on the beach.

I panicked. Oh my word! What are we going to wear? I looked at the kids, at the boys who *all* were in desperate need of haircuts, as were Dean and I.  I had nothing but t-shirts along for myself. Oh man, these were going to be the real US! The real deal! No hiding under brand new clothes or make up. Just shaggy heads, frumpy mom, sandy faces.

And I love them.

I love every single one of them. I have very few pictures of myself with any of my kids, and now I have pictures of me with every one of them. And pictures of Dean with every one of them. And pictures of all the boys together, and my girls together. And Dean and I....oh how these pictures of Dean and I together mean the world to me. Here are some of our favorites. You'll see everyone's personalities, from those who don't really care for hugs to those who are a bit more mischievous, the serious, the "Teen who can't smile for the camera", and the one who loves the camera most.

I want to say a special thank you to Tamara Gibson Photography, who so generously gave time to our family. These pictures mean the world to us.