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

Going Home!!

They said I can go home now. These people here have been so nice, but I'm ready to sleep in my own bed with my Mommy & Daddy!

Plus, I want to meet my big brother, JJ!

I'm ready - let's go home!

Mason is born!

We wanted to announce the arrival of our son, Mason Alexander Higginbotham on Sunday, April 26th. He arrived at 7:48 PM, weighing 6lb 15oz and 20 and a half inches long. Justin and I are very proud of our new baby boy!

We also need to share that there were some complications; however Mommy and baby are doing great! I was released from the hospital and am bouncing back quickly after a c-section. Mason is still in the NICU. He is a very special boy that will have some on-going developmental needs as he continues to thrive. I have attached a picture of the 1st time I got to hold him in my arms the night he was born on April 26th.



After a week of tests, x-rays, MRI’s, and other tests too numerous to mention – we know that all organs are healthy, and functioning properly and he has not been on any life support. He has been diagnosed with Apert Syndrome which is a craniofacial/limb disorder – which means some of his bones fused too soon – specifically those in his skull, hands and feet. Common as part of this, is a cleft palette, which Mason does have. Using a scale of 1-10, with 10 being the worst Apert’s case, Mason would be a 2! Which is awesome news!


But this precious little boy, because of the Apert’s will still have special needs requiring multiple surgeries to insure his continued growth and development, the 1st of which will probably be in just a few months. Some of these surgeries may have to be repeated as he grows.

The 1st hurdle, we are facing is due to his cleft palette, and finding the right way to feed him. They are on the 3rd type of bottle and over the last two days, he seems to be taking to it very well – they are replacing tube feedings with bottle feedings – going from 1 a day, to 2, and today we are up to 3. He has even gained back his initial weight loss (all babies lose at first) and has surpassed his birth weight – weighing in last night at 7 lbs, 2 ozs. If this progress continues at this rate, he will actually be discharged, possibly within the next week! The 2nd picture attached was just taken yesterday, where he was dressed for the 1st time in his own clothes. (thank goodness for cell phone cameras)

Mason is strong and is blessed with family and friends with unending love. An added plus is my educational background in Early Childhood Development and my work as a teacher and with children will be invaluable in Mason’s on-going development over the years. This little angel definitely picked the perfect Mom. J

Thank you all for waiting for the news. It has been a hectic week with long hours at the hospital. But Mason is here and we are truly blessed!

Sincerely,

Allison and Justin Higginbotham