Park Playmates

As we wait for the warm spring weather to return, here's some snapshots from the 80 degree spring fever day we had last week...

We decided to meet some friends to play and have a picnic dinner. It was a gloriously warm day and it fell so good to be outside in the sunshine. The kiddos had a great time pushing Natalie, Jenna, Noah, and Ethan in the baby swings. Yup, that's two sets of twins in two swings.

This was the boys' first time and they loved it.

 

Noah actually threw his head back and laughed so hard!

Ethan giggling while big sisters take care of the pushing...

Love those chubby rolls!

Love this shot. If you look closely there are two sets of twins in the swings and another set of twins on the slide. Totally a coincidence. They did come over to talk later.

Natalie and Jenna were all smiles, too. Sweet girlies getting so big and starting to learn to walk already.

Such a great end to a sunny day. Can't wait for the warm weather to return!

C-tube Burn Update

Julia's granulation tissue burn when well last night. She still panics as soon as she sees the pile of stuff and she knows her meds so well that as soon as I offer her a spoonful of OJ with orange particles floating in it, she knows she's being sedated. She literally sees the spoon and goes into the fetal position clutching her knees (to prevent access to her stomach) and starts screaming "Don't burn me!!" Then I have to pray her body flat again so I can put on the EMLA numbing cream and PressNSeal wrap.

Ugh. I hate this so much. We try to be as systematic about it as we can and minimize the emotional confrontations. Fortunately her screaming is cut short after about 20 minutes when the sedation kicks in. I am happy to say that this one went pretty smoothly. She was sleeping well enough that she actually didn't start fighting back right away. She remained calm until we burned past the top layers of skin where the numbing was in effect. Then she fought back and screamed, but we had a good enough grip that we were able to get through it.

In the past her pain after has been one of the hardest parts. She is so distraught and nothing really helps to lessen it- just waiting for her to fall asleep. This time the crying was brief and she slept soundly after that. The pre-meds for pain, numbing cream, and sleeping meds seemed to have helped. And thank you so much to the people who have committed to pray for her and us during these procedures. We have truly felt those prayers and is so comforting to be able to tell her while she cries the names of people that are praying for her right at that moment. Thank you all so much for loving us and interceding. She has also been more receptive to comfort. In the past she always pushed us away- sometimes for days after. As hard as it is to have to hurt her and see her in pain, it lessens the pain when she crawls into my arms for comfort.

Health Updates

We've had an assortment of appointments around here lately, so I figured it was time for an update...

Julia had her check up with Dr. Fortunato(GI). He continues to be pleased with her progress. Her cecostomy site looks good. We are burning the granulation tissue at home, the meds regimen we are using works and has her colon in a healthy pattern, her urinary issues have not returned, and she has emotionally adapted to life with a c-tube. Check, check, check, check.

So where do we go from here? His ideal is to see the tube removed when she hits the teen years. So how does that happen? Well, we are still praying for healing. As he has told us in the past 70% of these cases show regained normal colon function and we are still hoping to be one of those. He is encouraged that her past surgery showed visually healthy colon tissue. Then he said we need to start charting, experimenting, and tweaking. And by "we" he means me. He wants me to come up with these plans and charts, test and record the data, and report back to him. I thought he was the specialist here? He said at this point she is obviously completely laxative dependent and the goal is to reverse that. Since we know her best and observe her daily regimens, we are best suited to make changes. So let the tweaking begin. We'll see how it goes. He wants us to take baby steps and report back regularly. Time to dust off my "momcologist" degree again.

The kids continue to make great progress at...

 

They are both in a really good place. It is so refreshing to see them act like typical children and not traumatized ones. We have seen a lot fewer emotional outbursts and much more resiliency, especially with Julia. The kids' favorite activity there is playing with the huge stuffed animals in the waiting area...

Julia calls this one "Bagel" the beagle...

Still so thankful and feeling incredibly blessed that God has put this resource and these people in our lives. It has made a world of difference for all of us.

In recent weeks though Carter has developed an aversion to all things medical. After a series of appts for him in past weeks, I brought it up with Kate. After talking to Carter it seems he has taken all of his stress from dealing with Julia's cancer and the medical situations of his friends and connected to his own routine visits. As a well-check and several shots and labs loomed in his near future, we were hoping he would find a way to move past his anxieties.

I am happy to say that lots of talking and using relaxation techniques (like you see above) resulted in a very smooth and calm appointment. The only bump in the road was that he blatantly failed his hearing test in his right ear. It was so bad that I could actually hear the beeps coming from the headset all the way across the room and he still couldn't hear it. Even with the nurse blatantly telling him he should hear something- he couldn't. He has had trouble with this ear the past two months and we actually went to the ENT just a few weeks ago. He said it did need to be cleaned out a little but wasn't overly concerned, so now back we go to investigate further. Poor Carter regularly asks, "Mom, am I going to start hearing in this ear again soon?" That's the plan, we hope.

And my back situation continues about the same. I have been in PT and taking meds for six months now for a disc tear in my lower spine. Some days are better than others. I have to be very careful to sit in hard chairs with my feet flat on the floor, not to lift anything heavy, not to twist, not to bend past 90 degrees- so hard! Daily life really gets in the way. It is self-correcting in that when I am not good to my back, it is not good to me. We are still praying that the disc heals and normal life becomes more possible. After many months of doing well with my dysautonomia, I have been having trouble again with low blood pressure- a lot of 90/60s. Thankfully, not feeling too many ill effects from it. Trying hard to stay in the double digits or at least close. Eating lots of salt and drinking as much water as I can stand.

We continue with Julia's granulation tissue burns at home. We are still doing them every two weeks with light sedation. Tomorrow night we will do the next one. Please pray for safety during the process, that her blood pressure remains stable, peace for her fear and anxieties, success in burning the tissue, minimal pain afterward, and peaceful sleep.

Her next Scan Day and oncology physical is April 2nd...

Wonderful Wednesday

It has been a full week of activities in our house. Wednesday we headed to Raleigh to visit the NC Museum of Art with our CC group. 

They divided the kids into groups of five, each with their own personal docent. They did a wonderful job working with the kids to discuss and dissect different works of art from around the world. We looked at many different examples from throughout history.

This sculpture was a piece from Africa made of thousands of tiny pieces of found metal linked together to make a tapestry.

The kids were fascinated by these faces on the wall.

They are the work of a current artist who travels the world and makes each image to resemble the face of someone she sees using the clay she finds in that area. Can you guess which of these two she made in NC? (Hint: Look at the local soil in most of the state.)

An ancient Greek mosaic made from tens of thousands of pieces of tile and glass, made by hand.

Off to Africa to look for the story and meaning of these old royal headpieces...

An actual Egyptian mummy sarcophagus. This relic is 2500 years old!

Exploring the works on Monet comparing two pictures of a French cliff. They explored the brush strokes, colors, emotions, and technique.

Did you know Monet almost lost his life painting this second painting?

This modern piece was so intriguing? Can you tell what material was used to make the image?

Did you guess spools of thread strung on chains?!

In order to see the image right-side up, you had to view it through the glass orb...

After our tour was complete, we spent the afternoon downtown with friends. After finding a place to park, we decided it would be easiest to just have our picnic in the parking deck before heading out to our destination. I have to say this was our first parking deck picnic and it was lots of fun.

Then we took the kids to Marbles- an incredible children's museum. Julia loved the veterinary office!

Such an incredible setup- from the animals, to the cages, to the medical equipment- they thought of everything.

Then we were under the sea.  Carter, the deep sea diver checking out the coral reefs and submarine.

Julia and the gang enjoying the sea animals...

Out to the garden for some fun in the dirt...

They also had child-size tool workshops with real kid-size tools. Turns out Julia knows her way around a handsaw, table clamp, and hand drill...

Here's her finished pet house!

Carter has been looking so forward to playing sock hockey in their indoor arena. It did not disappoint.

After a fun, full gorgeously warm day, we continued our journey east to visit my sister Beth and Anderson. It was great to hang out and catch up in my sister's kitchen, listening to great tunes while the cousins happily played. The kids had a blast playing games, Kinect, games, reading books, being silly, and going to the park.

Hard to believe that we had a snow day Monday and by Wednesday it was almost 80 degrees!

After a yummy lunch with the Cracker Barrel crew it was time to head back home.

Thanks for all the memories! It's a been a fun, full few days, but it was worth every minute for the sweet time with people we love.

Cracking the Code to Curls

I have people asking me all the time how we take care of Julia's hair. It actually took me a while to figure it out. I myself have thin, fine, oily hair. Julia's hair is the complete opposite- thick, curly, and dry.  So here's what we've learned so far...

 

First of all curly hair needs to be washed as little as possible. As opposed to mine, which could be washed twice a day, hers is more like once or twice a week. We only wash it if it is dirty, sweaty, or she's been swimming. Shampoos strip the hair's natural oils. So curly, textured hair's best friends are shea butter, olive oil, and coconut milk. When she takes a bath, but we are not washing her hair, she still wets it and we condition, but don't shampoo. We love Organix shampoos and conditioners. We usually use the shea butter of both because it is the most moisturizing. I put the conditioner on right before she gets out of the bath and lightly rinse with just one cup of water, so most of it stays on the hair.

After we towel dry it we put in Curl Smoother Creme and work it all the way though the hair. It makes it very easy to brush and keeps the girls soft and frizz-free. And it's less than $5 a bottle.

I only brush her hair when it's wet. If I need to brush it dry for some reason, I wet it and apply more Curl Creme first.We love the Hair Bean. She is not a fan of hair brushing and says this one doesn't hurt and it is gentle on the hair strands.

I also style it while it's still wet- braids, ponytails, pigtails, buns, etc. Her hair can actually stay for a week once styled.

The great part is all of these products are very affordable and easily available at your local drugstore or super store. Hope that helps!

Snow Day... finally!

The kids have been anxiously waiting for some snow- even a long stay in PA didn't yield any. It was a very exciting morning when the kids woke up to find snow. It wasn't much, but enough to play in for a few hours...

 

 

After having Fun with Jackson, they were all getting cold and wanted to come in and warm up by the fireplace. Carter whipped up some snow cream...

..and they enjoyed their yummy snack.

By afternoon it was all completely melted and Julia was so sad it was gone. And my cold little kiddos were begging me to turn on the A/C because now they were hot. Gotta love these NC winters. Back to 70s and short sleeves now.