Surgery Update

Thank you for praying!

The surgery took longer than expected yesterday (over 7 hours!) but the
doctors said he did well. He had a slight fever in recovery last night, but
that went away during the night. He is still on pretty strong pain
medication, and he's been pretty cranky today, as you would expect. He's
drinking and holding down formula which is good progress.

In Recovery:

These pictures will break your heart, but my sister sent them and I wanted
to share with you. He'll be wearing casts on his arms to keep him from
moving his fingers so that the skin grafts will grow on his hands. I'm not
sure how long he'll be in them, but you can imagine the difficulties an
active 11-month-old will be facing.

Morning after - drinking with the help of little doggy!

They expect him to be home from the hospital tonight or tomorrow morning if
all goes well today. As the Lord brings him to mind, please continue to
pray for his recovery and for peace in their family.

Latest & Greatest about Mason

Hello all!

We apologize for the long interim between updates. These last few months since Mason’s first surgery have just been a whirlwind. So let’s go back to then…his first surgery.

Mason’s first surgery was on December 29th! That day was very stressful to say the least, but Mason came through like a charm. He was sedated for most of the day and he still had a tube in to help him breath. He looked like he had been hit by a train, but all the doctors and nurses kept insisting on how great he looked for having just gone through what he had gone through. By the end of the night he did give even the nurses a scare though. While they thought he was still sedated, Mason decided to roll over! He almost rolled off the bed! After that, he had to be restrained any time he was left in the bed alone. As he improved and progressed in his healing, he was moved from PICU to an intermediate care unit then to a regular room all over the course of 4 days. On the 4th day, his doctors came in to check him out while we were there and gave us an update. One doctor also decided to prove to us just how durable the distracters in his head were. Without warning, the doctor grabbed one of the distracters and shook Mason’s head… HARD! We all just gasped, and we swore that Justin was about to hit the floor, although he insists he wanted to hit the doctor instead! The whole thing didn’t phase Mason in the least! A good lesson to learn, but not one I recommend the doctor do to other patients! Overall, Mason spent 8 days in the hospital and then was released to go home. He would have been sent home after 6 days, but he developed a blood clot in his leg when they removed his central line.

Once home, then the “fun” started. Doctor’s appointments twice a week (the hematologist for the clot, and the Cranio-facial team for the distracters in his head). We also had to give him a shot twice a day for the blood clot and turn his distracters twice a day to slowly spread the bones in his skull. After 17 days, the extended part of the distracters were removed and we no longer had to turn them. All the turning created a 17 ½ millimeter soft spot all the way across his skull. The really cool part was that we noticed that he now had a round head. As you can see in the pictures attached (one is from 4 days before the surgery and the next is from the morning before we removed the extenders), the shape of his head had dramatically changed. Finally, after a month of shots, his ultrasound showed that his blood clot had completely cleared and we were able to stop giving him shots.

Before Surgery:

Morning before distractors removed:
By then, it was February. Things had just started to settle down into some sort of normal-ness… yeah right!! February was just as busy as January was. My brother was promoted to Warrant Officer in the Marines and my sister had had her 3rd child. Since my mom, who had been staying with us to help watch him while he wasn’t allowed at daycare, was now away helping to take care of the rest of her family, we all took time off to stay at home with Mason. Mason started to really enjoy playing and crawling around. Then he discovered that he could crawl through the coffee table! Before we knew it, it was March! Mason started to pull himself up to a standing position, then he started “cruising,” as the physical therapist calls it, all around the coffee table. Now he is really getting fast at going around the furniture. He is getting braver about letting go just long enough to stretch and reach the next piece of furniture, but he hasn’t tried to walk solo yet. Along with all these new discoveries and accomplishments have come bumps, bruises and scares! All part in partial to any growing child his age. Thank goodness for his helmet!

We also decided that we should give Mason his own room, since he has decided that bed time, now means play time! One picture included, is an “in progress” shot of the living room during the room switching. All the stuff from the room was all over the living room and Mason was playing. Can you find the baby in all the mess?

And for his crowning achievement, Mason said, “da-da” tonight! Justin has been gloating all night! I am just happy that he is making the “d” sound because the speech therapist told us he probably wouldn’t make that at first because of his cleft palette! I guess he showed her!

Look! I have shoes on!

Now as we near the end of March we are gearing up for Mason’s next surgery. On Wednesday, March 31st, Mason goes back in. This time to remove the distracters in his head. The doctors are expecting this to be an easier surgery than it was to put them in. They will also separate his pointer and pinky fingers on both of his hands while he is under anesthesia. After this surgery, both his hands will be in casts in order to allow the skin to properly heal. This is going to be the hardest thing for him to deal with. He is so active and mobile. Not being able to use his hands is going to be VERY frustrating for him. All in all, he is only expected to spend one, maybe two nights in the hospital this go round. As with the first surgery, I will be keeping everyone posted via Facebook and text messages.

Thank you all for your continued support and prayers. I will continue to keep everyone updated as we go over the next hurdle in our lives!

All our love,
Allison and Justin

More on Mason...

Mason was moved from the ICU into the IMC ward on 12/31. He was eating from a bottle and they had removed the bandages from his head. He was doing very well...and continued to progress rapidly!

By that evening, he was sitting up in bed! In this picture, you can see the 4 distractors that are sticking out of his head. These will be turned to open up space in the skull for the next 3 weeks.

The next day, they removed all tubes, drains, and the catheter. He still had to be connected to a monitor, but Mommy & Daddy finally got to hold him! It was a great start to a Happy New Year!

By Saturday, Jan 2nd, he really seemed to be back to himself. He was being playful, sticking out his tongue, and smiling a bunch.

By that evening, he was moved into a regular room, and all IV's and tethers were removed. The word they had at that point was that he was pretty much ready to be released, but they were needing to order some sort of head gear. Due to the holiday, they weren't able to get anything this weekend.

By Monday, Jan 4th, they were expecting to be released "any day now..." The doctors had decided that they wouldn't wait on the head gear, as it would take too long. Also, when they took out his central IV, a blood clot had formed and was affecting his left leg - which they found and were treating with medication. That was clearing up quickly.

With everything that this little guy has been through in the past 6 days, you wouldn't know it to be around him. He is full of life, happy, and spreads that joy to everyone he sees!

Day 2 - Mason is Doing Great!!

Today in Austin, the sun was shining outside the hospital, and inside, too! Mason was alert and this afternoon they removed the breathing tube. He was hungry and ready to chow down. They only wanted to give him small amounts, and he would get very upset when they took the bottle away from him. He was holding his own bottle, and even smiled and giggled at the red light on his toe!

His doctor checked him over, and said that he is "doing great" and should be moved out of the PICU tomorrow. The little fighter is ready to go - they have to keep tying him down to the bed because all he wants to do is turn over!

Mason's Surgery Today

Mason went through his first surgery with flying colors. It was a long, exhausting day for everyone, as they were to be at the Dell Children's Hospital at 6am, with the surgery to start at 7:30. It took longer than expected to get him ready, since he is so little, it just took a long time to get his lines in and all the IV's going. But they finally got started and made the first incision at 10am.

It was to be a 6-hour procedure, but they were completely finished in 3 hours! Everything went as planned with absolutely no problems. The doctors said that there was pressure starting to build in his little brain, and he has some drainage - but they just kept telling Allie & Justin how well he did and how good he looked. All reports are better than even they expected. An answer to all the prayers, that's for sure!!

They will keep him sedated and keep the breathing tube in for most of the night. Allie & Justin are able to stay close by in a Ronald McDonald house so that they don't have to travel too far and can have a place to rest and shower. Mason is expected to be in the hospital for 7 days. Right now he is in the PICU, and hopefully soon will be moved to a regular room as he recovers.

This picture was taken almost immediately after the surgery. It doesn't look pretty, but the doctors said he really looks great!!!

The latest report we got this evening said that he was still sedated (at 8pm), but they also had to tie him down on the bed because he kept trying to roll over! That little rascal won't let anything keep him down - he's a little fighter.

If there are any updates, I'll post them here when I can. God Bless, and thank you for your prayers and support of Mason, Allie, & Justin.

From, Mason's Aunt Jenny

Merry Christmas!

Hello all!

We send this in hopes that everyone has a wonderful and very Merry Christmas! Sorry that it has been so long since we have sent out any updates or personal emails. Time has simply gotten away from us. We are very blessed to be spending our first Christmas with Mason here at home. Originally we had been told that his first cranial surgery would be on December 16th. Then they called and changed that date to December 30th. Well, we were just informed that they needed to move his surgery again. Luckily this time it was only a day difference. So now officially he will be having his first cranial surgery on Tuesday, Dec. 29th.

While all of this date changing was going on, life has been flying by! Mason is almost 8 months old (will be on Dec. 26th) and is just full of life. He is the happiest baby we have ever seen. He will smile and laugh at everything. He is crawling (army crawling at least) all over the place! One of his favorite past times is chewing on the coffee table. He hasn’t cut any teeth yet, but we hope he does soon so he will stop flooding us out of the house with all the drool! J He is eating solid foods (when it doesn’t come up his nose) and is slowly putting on some weight. He is up to 14lbs 4oz. However his height hasn’t stopped yet. He is now 27 & ¾ inches long! He is definitely going to be a tall, skinny one.

Mason has been to his many specialists over these last few months too. This first surgery will consist of the doctors implanting 4 devices into the seams of his skull and slowly expanding his skull over several weeks. Then they will leave the devices in for about 2 months to allow his bones to grow open and out. After those few months, they will then remove the devices. This is apparently the newest technology in expanding the skull. If this procedure is successful, then Mason may not need to have another cranial surgery until he is 3 or 4 years old. Worst case scenario will be that it is not successful and they will need to repeat the surgery in a year. The orthopedic hand surgeon will be separating his first finger and pinkies on both hands sometime in February. This hand surgery will probably be done at the same time that they remove the devices from his skull. Then they plan on fixing his cleft palette sometime in this coming summer after he turns 1.

We want to also say a huge thank you to everyone for all your prayers and support, both emotional and financial! The benefit we held in November was so successful we were able to raise over $10,000. This has all gone to his medical expenses, keeping us going back and forth to all his appointments, and time off from work. We are so blessed to know that we are so loved by our family, friends, and community! We hope everyone has a wonderful Christmas and Happy New Year as well. We will keep you posted on Mason’s continued progress!

All our love,
Allison & Justin

Benefit - Volunteers Wanted - Save the Date!!

1st Surgery is Scheduled

Just wanted to let y’all know that Mason’s surgery has been set for Dec. 16th. He is expected to spend at least 7 days in the hospital. We will have 2 meetings with the surgeons, one in October and one in December, to go over the details of his surgery. Basically it will be opening the back of his head this time. His second surgery will be in April/May time (closer to when he is one) and then they will do the front of his head. More details to come as we get them.

Ouch!

I am 4 months old today! I weigh 11lbs 10oz and I am 24in long. I am perfectly healthy, so as a reward I got 2 shots! :(

An Update on Mason - now 3 1/2 months old!

It’s hard to believe that Mason is already 3 ½ months old. As of today, he weighs 11lbs, 7oz and he is 24in long. He has discovered that he has hands and likes to chew on his fingers. One of the pictures I have included show him with his hand in his mouth, looking like “Oops! I got caught!”

He is starting to use his legs to arch his back if he is lying on his back and he turns himself over onto his sides. He is almost got the idea of turning over from his back to his front, but he never quite gets all the way over. He has realized how to spit and blow bubbles and he has discovered how to gargle! This has made feedings rather amusing and quite messy at times! He is really starting to become interested in toys and things that make noise and have lots of colors. Thank you, Uncle Pete and Aunt Johnnie for the exersaucer! He loves spending time in it! (Another picture shows him in it!) His favorite toy is a little stuffed doggie! He will hug it to his face and chew on its ears and tail. He is such a happy boy! He smiles and talks (well he makes baby noises) all the time. He sleeps like a champ (all night long) and usually only gets fussy if he is really hungry or is fighting sleep (as most babies do!). We are so blessed! Mason is such a joy and wonderful addition to our family!

It has been quite a busy summer. We started off with multiple appointments to visit the many specialists that are working with Mason to ensure that he is meeting all the milestones he is supposed to. He sees a Geneticist, a Cardiologist, an ENT, an Ophthalmologist, a Reconstructive Surgeon, a Neurosurgeon, a Orthopedic Surgeon, and a Physical Therapist. Not to mention his regular Pediatrician. According to these specialists, Mason is doing very well for having Apert’s Syndrome. The Cranio-Facial team (the Reconstructive surgeon and Neurosurgeon) had a CT and a Spinal Tap done on Mason in June and July. The results showed that he does have very little room left in his head for is brain to grow and there is a little bit of pressure and fluid building in his head. However, they don’t feel that Mason is in any danger of suffering from any damage or problems that can arise if this pressure were higher. We have set a plan of action and they are going to perform the first surgery on the back of his head to open more room for his brain in December around Christmas break. They will do surgery on the front of his head to reconstruct his face and fix his cleft palette closer to when he turns one, sometime in April or May.

He has had 3 ear infections over the summer, as the ENT said would happen. Because of his cleft palette and nasal structure, fluid tends to drain into his ears and has no where else to drain and thus turns into infections. As a result, the ENT put tubes in his ears at the end of July to help him drain the fluid in his ears and prevent more ear infections. He came through that minor surgery very well. We will also be seeing the Orthopedic Surgeon in November to assess Mason’s hands and discuss when he will be doing the surgery to separate his fingers and straighten out his thumbs. They decided that he would not separate Mason’s toes, but they will straighten out his big toe to allow for shoes to fit better.

As for the rest of us we are doing well. Justin has been busier than ever with it being pool season! And the summer ended all too soon when band camp started at the beginning of August for me. School starts back for teachers next week and the kids go back on the 24th. Mason started “school” this past Monday. He is going to Emile Elementary Child Care Center. He is doing great in school and his teachers are wonderful. His main teacher is Faith. She is also our neighbor 3 doors down, and his other teacher is Sarah, who has been good friends with Justin’s parents for years. So we are thrilled to know that he is in great hands.

I think that covers all that is going on with our family at this time. Hope all is well with you and your families as well. We will continue to keep you all posted on Mason’s progress and anything else that is going on. (We will be holding a benefit dinner and silent auction sometime in November as well as having a garage sale in October to help offset the costs of Mason’s surgeries and doctor’s bills. More details to come!) Love to everyone!


Love,
Allison & Justin