17 Mar Spring Break
So maybe we didn’t take any exotic vacations or do anything too out of our ordinary, but we did have a pretty busy week.
Our spring break started with a visit from Teague, Gray’s best friend and Keegan’s godfather. Unfortunately, it was a terribly rainy weekend, but it was a fun time anyway.
Audrey has become quite the little dictator and was quite fond of Uncle Teague.
Within a few minutes of his arrival the first night, she started in with “SIT, Teague!”
And she didn’t stop…for three and a half days. Any time he would leave her side.
Thanks for being a good sport on that one!
On Monday, we went to meet the most beautiful baby girl, sweet Alexandra Claire. Alexandra’s mommy, Stephanie, is my oldest friend, and we are so happy for her, proud daddy Matt, and super big brother, Brady! Welcome, Alexandra!
Lil’ Alexandra Claire
Audrey being silly in Alexandra’s nursery.
Keegan rockin’ out.
I’m crazy for posting this shot, but this was the best we could do of a group photo!
Stephanie, Alexandra, Brady, Bea (Steph’s mom), Martha (Mamie), Audrey,
Alex, Keegan, and me.
Dueling drums with Brady.
I am so mad I didn’t get a pic of it, but super cute Brady found a new girlfriend this week.
Nope, not Audrey. Aunt Alex! He was super enamored with her.
Alex colored a picture for him to wish him good luck in his first soccer game.
Stephanie reports that Brady loves it so much, he asked to sleep with it! Too stinkin’ cute.
Mamie and baby Alexandra
Tuesday, Keegan had his first neurology appointment since we came home from Boston in the fall. The visit went well overall. The best thing we heard was how pleased the doctor was with Keegan because he had been expecting a child with much more severe complications based on the brain scans and medical history he had read in advance. We have known for quite some time that Keegan has been blessed to dodge some big neurological bullets, but to hear it from the neurologist was extremely reassuring. The damage is there, but the brain is such an amazing organ that Keegan has managed to overcome and compensate for so much of it. The worst news was (and this is not even comparing his most recent scan in September) that Keegan has had more strokes than we thought. Again though, they are in places where he has been able to compensate and recover without too much lasting impact other than developmental and behavioral issues. The doctor said he definitely thinks we need a repeat brain MRI, but we are going to wait a little while since it requires anesthesia. If nothing comes up to require one sooner, we will repeat it in September. In the meantime, the doctor said Keegan was at a high risk for having “silent seizures” due to the inflammation from MAS, so he will have an EEG done next week. We have absolutely seen an improvement in some of his autistic tendencies as his inflammation markers have improved over the last month though. A direct indication that he is experiencing central nervous system involvement during flares. Lastly, he will have a swallow study in the next week or so to determine if Keegan’s continued drooling is due to a structural problem or a neurological issue. Then we will follow up with the neurologist in four months. Again, overall it could have gone much worse, and for that, we are very thankful.
On Thursday, we did something else fun – Keegan’s first trip to the zoo!!
We were so happy Daddy was able to take the morning off of work to join us!
Ta-da!
Can you find the gorilla in this picture?
Aunt Alex is off work for the week too, so she joined us.
Watching the elephants with Audrey at the Giants of the Savannah exhibit.
Keegan did pretty well. As we expected, he was not interested in the things that most kids are at the zoo. Like, oh say, the animals. He preferred to play with the map given to us at the entrance and run around to the script in his head. However, this time he transitioned between areas of the zoo SO much easier than our excursion to the aquarium over Christmas.
Aunt Alex and Keegan at the lion exhibit
The cheetah was Audrey’s favorite this time, hands down.
The cheetah would walk out of view, and she would call, “LA LA!!” (i.e. cheetah) over and over again until the cat came back.
Feeding the giraffes some lettuce
The giraffe stuck out his tongue to get the lettuce and Keegan said, “P.U., stinky!”
I don’t know if it was the tongue sticking out or what. He couldn’t smell the giraffe’s breath or anything due to his mask. Crazy kiddo.
This was a highlight for the adults. These are two Galapagos turtles.
One has pinned the other upside down against the wall. We watched this go on for about 10 minutes.
The one on the bottom would work up some energy for a minute and then give a big push.
Poor upside down guy. I’m sure the end result was an upside down, defeated giant turtle!
Daddy and Audrey at the tiger exhibit
We didn’t get any pictures of the actual koalas. They were asleep, as they do for 20 hours a day, which prompted Audrey to tell the boys next to us, “shhh!”
And this is Audrey after the zoo.
If you couldn’t tell from the pictures above, she spiked a fever while at the zoo.
We took her to the pediatrician immediately (hence the Olivia sticker on her shirt), where her temp peaked at 103. No strep or ear infections, negative for flu. Started her on antibiotics
since she has had a runny nose for over a week. So far, Keegan is ok, and his labs were good today.
Audrey was a bit better today. Here’s hoping it passes quickly and Keegan stays safe!
Well, that about wraps up our Spring Break. Not too exciting, I know. But it was nice to do a few fun things this week. I am super behind on pictures and what not, so I will try to squeeze those in soon. Keegan has his normal therapies, labs, GI appointment, an immunology appointment, and an EEG scheduled for next week. Back to the grind. At any rate, we hope everyone had a safe and fun Spring Break, and happy Saint Patrick’s Day!