Recovering and January Happenings

While it was great that Makin seemed less exhausted this time after surgery, it also meant by week two I was already saying, "Don't run!" and "Settle down!" literally 20+ times a day. God did not build this boy to sit still.

This protein powder helped me not to worry as much about protein and vitamins,
but I did have to force him to drink it every day.
This was one of the usual 3 times I used the blender each day.

We have become all too familiar with the "no chew" diet and definitely are not fans. I tried a batch of soft scrambled eggs when we got home and Makin couldn't handle eating them without chewing. :( There went another salt option for two more weeks! This year he embraced applesauce and smoothies much better than last. Thankful he also loves oatmeal (which I had to blend) and yogurt, and of course ice cream. ;)

Brad is the super-soft mashed potatoes pro.

The night we got home we had a friend drop by with a gift from Makin's class. They all pitched in so that he would have some quiet building time to keep busy when he can't run. The only problem is he couldn't resist building them both the next day! It was wonderful while he was busy building though, and he has loved playing with them after. I loved the card with all the classmate's signatures! What a great class!!!

Makin was not comfortable going to school with his blood and stitches still showing on his face. So he did miss a bit more school than I first anticipated. We did some extra home-schooling his usual GCA days and then tried to have a bit of fun too. It sure made me miss the days when he was home with me!

Love this corner of the library!

By week three the crankiness was definitely kicking in and we were counting down the days. He was sick of the food and sick of mom telling him to settle down. "I can't do anything!!!" (In reality I was just asking him not to run or play any games involving a ball or the like ending up in his face...) To a six year old active boy this was a big bummer.

Gorgeous weather was great for flying his drone...and I only had to remind him not to run once! :) "Don't let it land in the puddle!" Cutting it kinda close don't ya think!?!

He worked on his solar robot kit and made a few robots.
This was the boat. This guy is fascinated with solar energy.

Makin came up with the idea of making his own air hockey table.
Love his creative mind.
It took a bit of problem solving with the parents on how to make sure it didn't move!

Another GCA mom asked about Lorelei taking a homeschool PE class with her daughter Wednesday afternoons. Brad and I had just been discussing how to get Lorelei another more consistent socialization/activity so we decided to try this out. Our trial class was the end of January, but the class will go through February. She loved learning some fun new games and I can't wait to hear/see how February goes.

Lorelei also started a tumbling class at a new gym Tuesdays after school. I wasn't thrilled with her previous gymnastics class, so we are hoping this will be a better fit. Macie will be in her class, so we are excited for that as well! I watched the first trial class and boy these girls were getting a tough work out. The student to teacher ratio is better and I'm hoping progress will be made with the focus on the tumbling.

Virginia Beach Trip

We try and turn these trips to Virginia into as much fun as we can fit in alongside a surgery. Coming in January this year was a bit disheartening as we were hoping for a summer visit this time, but it does make an oceanfront room affordable so that has its perks. We love the easy walk to the sand, the sunsets and sunrises, and seeing dolphins almost every day. So here are the highlights of our trip...

Trip Prep
Okay, so I got this crazy thought since I knew there would be plennnnnty of tv watching as Makin recuperated from surgery...lets get through this plane ride without any DVDs...so Super Dad Brad found us lots of Magic Tree House audio books we could put on our phones. Worked wonderfully!!!

Awesome Airport Seats

Lost Luggage
I'm officially going to cram our stuff into carry-ons moving forward. Can't even tell you how many kids I saw toting around a backpack and pulling a carry-on through the airport...that is going to be us! I have flown twice in the last year, and BOTH times my luggage was lost. I'm officially motivated.

By day two we checked our bags status and it was still in Dallas (can you say DIRECT FLIGHT PEOPLE!?!) so we made a trip to Target to get the things we needed to survive another night/day. We called and talked to customer service every day to "nudge" our bag along and finally got it Friday, 4 days after we arrived. Brad and I were very thankful the bag with our clothing made it with us. So much easier to buy a quick outfit for the kiddos. This pic is the kids showing off their new jammies and tooth brushes. Of course that was the bag I moved all my shoes, soap and makeup into since ours was too heavy...I'll try to end the rant now...but in case you keep wondering why Brad needs to shave in the following pictures, now you know he was waiting for his shaving supplies to arrive. :)

Nauticus
This was a museum Brad and Lorelei went to last November and Makin wanted to check it out since he missed out last time. They especially enjoyed running around exploring The Wisconsin.

From Left, Clockwise - Loved trying to capture items with the claw in the yellow sub. The Wisocnsin
Petting some kind of crab, seeing jellyfish in the water by the ship (Lorelei spotted them!). Pretend fishing.

Such exploring to be done on a ship this size! I have no idea how they ever learned where anything was on these things. My favorite part was the donut shop. They had donuts all day long according to the info I read!

Favorite Foods
We wanted plenty of yummy food before the mush diet. :) No surprise at what Makin picked for our last meal! Brad and I decided a hotel with a kitchen would be important this trip, especially with how many days they wanted us to stay after the surgery! It made a HUGE difference in our sanity for the recovery time and we were really glad we made that choice.

(Not in the day's order.) Magnum bars (crushed up for loose teeth)
fish sticks with mac n cheese, chocolate chip Eggo waffles

First Friends
I love that we can get together with Melissa and her family when we visit. It seems like so long ago these kiddos were having playdates together before they were even in preschool. We saw the Bonfiglios one evening and one afternoon during our stay.

Taking a walk. Lorelei and Kira playing in the snow with Callie.
The boys enjoying a game of ping pong.

Beach Time
This is Lorelei's happy place. No doubt about it. I'm not sure I ever see the girl smile as big as she does when she is at the beach. Combining beach pictures into a collage just doesn't work most of the time...can't do them justice!

We took a walk one evening (when normal humans would not wear swim suits ;) )
and saw some HUGE jellyfish. We were walking to look for shells and saw about 10 jellyfish this size on the sand.
Much of the time Lorelei liked to pretend to be a dog. :)

The weather wasn't great for Makin, but we talked him into getting out the warmest/sunniest day.
My favorite part was that as soon as we got him out to where his sister was playing that morning (first day "home" after surgery) we looked out at the water and a dolphin jumped out right in front of us.
It was like they waited just to make our day! :)

Down Time
There has to be a lot of down time worked in when recovering from surgery. We stayed several days longer this time than last time, which made the trip home much more doable, but the hotel stay does get long when you can't get out much.

The hotel pool was a bit iffy, for the most part Brad thought it was too cold, but he toughed it out as much as he could swim with L. She swam at least a short amount almost every day. We saved some of the easier school work for the hotel, so we didn't have quite as long of a week beforehand trying to fit a week and a half of work into a weekend. Lots of TV after recovery. The hotel had a game room which Makin loved. It was a little variety when he got sick of TV.

Grecelyn's Mom texted this to me. Her journal "I like to play..." :)
Made me smile! Notice their matching GCA shirts and correct eye color for each?

Mug of ice cream soup.
Every. Day.

When a little boy doesn't want to clean the dried up blood out of his nose...
you make sure and tell him they look like walrus tusks! Anything to make it more fun!

Amazing views to brighten up our days and nights!

Dolphin Watch - saw them almost every day...even saw a baby once!
We also saw some kind of whale one day, couldn't figure out what kind but that was pretty awesome!

Heading Home
Loved the kiddos playing Legos at the airport. It is pretty rough combining the mush diet with a full day of traveling. I am amazed at how many smoothie/ice cream places they have at airports, but its still not great on any tummy when you combine sugary mush diet with flying nerves...Was so glad to get home.

Surgery Time

"Why are these doctor people so into fish?"

Where to begin on this one...

It feels like God has guided us through this challenge from before we even knew we would have Makin. We truly feel that is why we took the job in Virginia Beach. We were put with this surgeon without even asking. We had help from the CHKD team very quickly after finding out Makin had a cleft lip and palate in the womb. It was really emphasized this visit, just how blessed we were. Not only because we have the reality of changing to a different surgeon moving forward, but also because Operation Smile was doing some filming for their 35th anniversary AND they had a celebration luncheon shortly after our appointment with Dr. MaGee. We were able to meet more people affected and hear some great stories about Dr. MaGee. We were also filmed and will likely be in a video they put together for the 35th anniversary of Operation Smile. I'll post that when we see it. (Not sure when the exact date is.)

Being Dr. MaGee's LAST surgery at CHKD made us feel a bit like rockstars. :)

I loved hearing about how Operation Smile got started. It has been easy to dote, "Yes, his surgeon is one of the founders of Operation Smile" but it was more of a reality as another founder shared a bit of the story at lunch. (Which was really a lot of people crowded into their office waiting room, Dr. MaGee didn't want a fuss about it and his assistant said he would be annoyed at her for organizing it. :) ) Apparently the insurance system was not going to approve of these surgeries. When one of the other Doctors (who is now retired) told Dr. M this, he simply said, "Well, we need to raise money for them to have these surgeries then." His wife suggested the the idea of a run for raising funds, which they continue to do now 35 years later. Through Operation Smile they (along with other doctors who volunteer) have performed 250,000 surgeries. Brad did some reading during Makin's surgery, and it mentioned the first trip overseas to the Phillipeans, there were 300 families greeting them as they got off the airplane, and they were only able to do 40 surgeries that trip. They determined they had to come back.

Dr. M also mentioned how hard it was to retire from his practice. (Although it sounds like he has more than a full time job working for Operation Smile, which he plans to continue.) "When you retire from this type of profession and you hear from many of your patients, you go home feeling rather depressed. So keep me in your prayers."

One other fun moment was in the parking garage of all places. I noticed a man from the lunch coming up the stairs behind us. (He accidentally went up one extra floor...God-thing in my opinion!) I asked him how he knew Dr. MaGee. Turns out his son, who is 33 now, was born with a cleft lip and palate. His wife had some medical connections and they told him to go to Dr. MaGee. He moved from Fort Worth, Texas to Virginia in order for his son to have Dr. MaGee doing his surgeries. Now his grandson is 1 1/2 and has had Dr. M doing his surgeries until now as well. They both came down with the flu so weren't able to be at the party. What a great story! And boy I wish I would have gotten his email. I love meeting other families who go through this.

Indulging in a strawberry milk the day before surgery.

Now for the surgery...Makin walked back to the surgery room without any kind of meds to make him sleepy. He teared up a bit, gave us hugs, and then walked off with the nurses asking him questions to distract him. Oddly waiting through his surgeries is feeling a little too normal for me. Lorelei was on her best behavior coloring and listening to audio books. Brad usually makes a Starbucks run downstairs as we have never had anything to eat/drink that morning since Makin can't before surgery.

Dr. MaGee felt good about the surgery and feels pretty confident we won't have a problem in this place (front of his palate) again. Sure hope he is right, but we have learned there are no guarantees. We have a "no chew" rule for food (again) to try and keep this fistula from coming back. We were all very relieved he did not have to have packing in his mouth after surgery since the hole was smaller. This made the initial recovery much easier. They also worked to open up the left side of Makin's nose, so that makes the recovery more obvious on the outside. He could hardly breath out of that side of his nose, so we felt it was necessary.

Amazingly in the recovery area we had the same nurse we had last November. She and I both recognized each other, but I was surprised she even recalled how he reacted after surgery. "I remember he is really stoic right? Doesn't want to tell you he is in pain?" He probably never remembers her because of the meds, but she is def my favorite. The funny thing is Makin is usually not that stoic when it comes to pain. He is definitely what I consider the typical male and needs a hug when he gets hurt. Surgery somehow he reacts differently. He got one dose of pain meds right out of surgery and didn't want any more after that, even though it was through his IV. Not sure where that comes from, but we respect his wishes.

He was very happy when we found out his hospital room had a DVD player. He used some of his Christmas money to buy the Nexo Knights DVD and had not seen it yet. When he found out he could watch it he clapped his hands. (He talks minimally the first 24 hours after surgery or so...)"That's the only thing I have seen bring him joy, he is going to have a DVD player!" That was another nurse who called someone to replace a broken player in his room so that he could watch his DVD.

He is such a trooper and we were thrilled to be getting out of the hospital around noon the next day. I'm still glad we stay the night just so that he has plenty of fluids in his system, but no hospital stay is any fun!

I was a little disappointed when talking with the patient coordinator about what we need to do moving forward. I really want a break from all of this, but it looks like we can't wait long before meeting with an orthodontist. Then he will asses when Makin should have something put in his mouth to spread out his teeth to make an arch. This is usually done before he turns 8 or so...crossing my fingers they will opt to wait until he IS 8. I would like a year and a half off. Then when the archway is formed, he will go in for a surgery to have a bone put into the palate. That will likely warrent another trip to VA as we are planning to use the surgeon Dr. M worked most closely with as they have similar views of how to do things. The first step is finding the right orthodontist here.

Surgery #5

If you are feeling like we seem to average a surgery per year...that'd be about right and those are our sentiments exactly.

We are tired of surgeries and mush diets...but when you walk into CHKD you can hardly contemplate feeling sorry for yourself...we have a boy who is healthy, active, and smart with a full life ahead of him...these are still speed bumps...just one of those really annoying parking lots with way more speed bumps than you wish it had...

We noticed there was another fistula in Makin's palate and got ahold of Dr. MaGee's office around Sept/Oct to let them know. Then we got the email I have been dreading for about 6 years...Dr. MaGee was retiring...in December. I emailed asking if there was any way he could fit us in in December...forget caring about eating Christmas cookies, I wanted our surgeon! Well, Dr. MaGee must have decided to bend the rules a bit and offered to do a surgery for Makin in January. While our hearts are a bit broken we don't get a summer beach trip combined with surgery, we feel that strongly about Dr. MaGee's expertise. So, the decision was made and we just had to decide how many of us were going.

We decided it would be best if all four of us went. We got a bit more space in the hotel this time around and are staying several days longer for recovery, so hoping that means I won't need to carry this sweet boy through the airport on the way home. :)

We appreciate your prayers. Surgery is January 11th and we will spend one night in the hospital.  He has a really hard time the first few days after surgery because he is miserable with the packing in his mouth. We will have yet another mush diet for 3 weeks following.

Winter Break

Because we had a week where it was a lot of Christmas prep at home and family time, we were very ready for getting out and meeting friends right after Christmas. I quickly started making plans of how we were going to keep Makin from looking like this for another week and a half. :)













Arbor Hills
We absolutely love going to Arbor Hills. The weather was perfect and this was something I knew the kids would enjoy just the three of us! We loved adventuring up new trails and it was nice enough the kids could put their feet in the water. Thankfully I was smart enough to pack flip flops for those wet feet this time!

We even headed to the park after this trip because Makin needed another chance to fly his new drone...so Lor spent some more time in the sand while Makin and Brad (on a lunch break) got some drone time in.

Lake With Friends
We met Alex and Amelia at the lake. Amelia is one of Makin's closer friends in his class. Their mom and I have gotten to know each other better this year when I'm at the school making copies and she is at the front desk. Alex is in 3rd grade but she and Lorelei ended up playing great together, especially when they found out they are less than 6 months apart in age. :) Yes, this also made it the third day in a row to the lake.

Park and Chic Fil A
We met more friends at the park for a few hours and then headed to Chic Fil A where we ran into another set of friends, so stayed there playing way longer than planned. It was great.

So appreciate this weather, especially since you never know how rainy spring break will be!

American Girl Bistro
Since Lorelei asked Santa for "surprises" this year, he gave her a reservation for an American Girl Tea. She has my Kirsten doll from my childhood and while she doesn't play a ton with dolls, she does like them enough I knew she would like this special tea. She did get an outfit for her and her doll as well so it was fun for her to get dressed up alike...although definitely not Kirsten's usual style. ;)

And yes, L chose pink lemonade over tea. :)

We had special mother/daughter time together. It was a little overcrowded for my taste, but I know she felt very special. :) I'm now contemplating recreating out own tea at home sometime in the spring...will see if it happens. :)

Ninja Warrior
We met friends at Ninja Warrior but were pretty disappointed at how crowded it was. Makin only had a handful of kids there last time, so we plan to hold out for a non school break day for our next visit! Thankfully our friends had already planned to come to our house afterwards and they loved running around together for a couple of hours. :)

Movies
We needed to do something fun for our New Years, so Brad and I decided a special trip to the movies was it. We went to see Moana and "Loved it." was the review from the kids. :) Makin was cold in the theater so seriously sat on my lap the entire movie...which is harder than you would think with those theater chairs! I kept telling myself...someday he will want you to drop him off with his friends for a movie...enjoy this! :)



Sweet and Sassy and Interskate
Savannah invited Lorelei to join her at Sweet and Sassy for a girly makeover. This meant updo, makeup and nails done...and a few extras. This was one of her Christmas gifts and what a treat to be the friend to enjoy it with her. So special! I knew Lorelei would be in heaven. We snuck in getting Lorelei's ear re-pierced beforehand. (It closed up while recovering from the whole earlobe debacle.)

I kept the little brothers busy at the play area while the girls got pampered. They basically ran laps around the play area...and loved it.















We had to check out the indoor surfers...this is on the kid's bucket list. :)

Then we all headed to a roller rink. The week before Makin had commented while roller-blading around the entire house, "I wish we had our own roller rink upstairs." That got my gears turning and I immediately started planning a trip to one of the closest roller rinks. All the roller skating/blading they have done around the house made this a wonderful outing! They were loyal to their not-so-used-to-skating friends while also enjoying the freedom of being confident skaters, and one more family from GCA joined us as well. It was such a great time. As soon as we got buckled in the car after 2 hrs of skating Makin just said, "That was fun."

I was so thankful for this fun-packed break. Feeling so blessed.