Monday, July 7, 2014

Happy 4th and a Near Miss ER Trip

The past week has offered a variety of emotions - sadness, anxiety, pure happiness, joy, relief.

Sadness: Will was diagnosed with Leigh syndrome, a fatal and progressive mitochondrial disease, July 5. Three years ago. I still remember how Neil and I went on a vacation the week prior to finding out. We attempted to not worry about that upcoming appointment, enjoy our last few days of total ignorance of what was to come. It's hard to believe three years have gone by. I pray for the next three to go a little slower.

On Wed. July 2, Will's school held its annual 4th of July parade. The kids are able to bring a decorated bike, scooter etc and we go up and down the street. Some of the neighbors come out to watch, lots of parents, lots of sweating and lots of fun.

I couldn't shake the sadness that day. I pulled Will in a wagon while all his peers, including younger kids, were able to manipulate a scooter, bike or just walk a block. He didn't seem to mind, he waved his American flag while wearing his cooling vest; yelling at his friends to go faster on their bikes or saying hi. One of the "babies" at his school rode with him. I got home and kind of fell apart for a bit.

The obvious physical delay is becoming more and more evident. It was easier to blend in when he was younger, but now his peer group is playing on soccer teams, competing in swim meets and literally, running ahead. I am thankful that the Parish School, where Will is attending in the fall, offers mental health services for the child and family. I can't imagine how hard some of these conversations are going to be.

Quinn fell asleep the moment I got her back in the car. 

Anxiety: Neil ended up going on a fishing trip during the long weekend, so I packed up both kids and the incredible amount of crap that Quinn needs - I had a suitcase, cooler, and four huge bags of CRAP. Thankfully my mom and dad have a pack and play, high chair and exersuacer. (if they charged us for storage space, we would be broke).

Anyways, Quinn and I went up to my parents house early Thursday to get unloaded and my dad was going to bring Will up after school. I got a call about 3 p.m. that Will had just thrown up. I was easily an hour away from being able to get to him. Major anxiety. Neil was like five hours away. My dad was wrapping up his day and going to pick him up. I was a ball of nerves till I could see Will. You can tell so much by how he is acting and looking.

If Will pukes more than two times in a couple of hours that's a required trip to the ER for him. A couple of kids at his school had a stomach bug with fever. I was angry, sad and anxious. Angry that this was going to ruin all the fun stuff I had planned, sad for Will (and me) and anxious to see him and anxious about leaving Quinn with my parents while we were at Memorial Hermann Med Center. (But relieved she was settled and had everything she would need while I wasn't there).

Eating some chicken noodle soup and a liter of pedylite, praying for no more puking or fever!

I had debriefed my mom on Quinn's schedule, packed all our bags and was ready to take him to the ER.... I was laying in bed with Will that night just praying that the night would go smoothly and that Will would be rested and ready in the morning.

We went to bed early, skipped doing sparklers and opted out of even watching fireworks. Kind of made me sad to hear them booming in the distance, but much happier to be in a real bed, than a hospital bed at that time.

I think God decided to give Will a break. He never puked again. Never got a fever and he acted like he was on top of the world. His balance and walking wasn't the best it could have been, but he didn't hurt himself so I call that a good deal.

Happy happy joy joy!!!  We had soooo much fun and Will did great!

On Friday, we went to my sister's boyfriend's parents house - AKA Mr. Greg and Ms. Debbie's lake house in Conroe. We all had so much fun! That night when I was putting Will to bed, he pretended to pick up a phone, put it up to his ear and said, "I'm calling Daddy. Daddy, I went to Lake Conroe and went fishing. Goodbye." He is already asking when we can go again.

Getting ready to go fishing.

Reeling one in

Of course Uncle Tom had rigged up a fish that would make it seem like Will had caught one. While the picture doesn't show it, he was so excited. He told everyone how he caught the only catfish of the day.

Having fun with the Kaul's! 

Walkie Talkie talking - I love how happy Will looks here. 

Sitting on the dock of the lake.

Decorating cookies

Eating cookies

Saturday, we woke up and relaxed, ate some Mickey Mouse waffles, swam and then did Will's infusion. It was a good opportunity for him to rest and recharge while his cousins were on their own adventure in Lake Conroe.

Later that evening, we grilled hamburgers and made s'mores.

Of course, we did the s'mores in the AC with no mosquitoes. Little Quinn got in on the action, but didn't get to taste any of the treats. Maybe next summer. 

Major bubbles. Major silliness.

Now that Quinn has gotten a lot more sturdy, Will can hold her so much easier. 

Playing in the pool.

Cousin love. 

Relief: Home, unpacked, two very tired kids and two very very parents. But, it was really nice for all four of us to be home, settled and hanging out on the couch, building legos and talking about all our adventures.


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  2. My heart was in my throat reading about his illness. So glad he recovered quickly and y'all got your vacay time with family. Will is so dang handsome and such a kind, considerate, and awesome guy. I know you worry about how he will mentally handle his differences but I think he will surprise us all as he has done every day thus far. The image of him telling at the bikers to go faster made my heart swell. Will is awesome. He seems to celebrate everyone and doesn't begrudge others doing what he can't. Such good style. He's a hero. Truly amazing. Big hugs, mama.