Wednesday, January 25, 2017

Mason - A Good Update

Just a moment to update – Mason does NOT have bone cancer. We’re praising God for health in this one area. The area on the xray is the remodeling of a bone callus from the broken leg he had 2 years ago. Thank you all for praying!

Monday, January 23, 2017

Prayer Request for Mason

The last few days have been very busy for Mason! Friday he had Myelo Clinic and saw many of his doctors. We went with a few questions and got various referrals or answers. Then today we had a checkup with colorectal who he sees for bowel management. That triggered an unexpected result - another appointment with the words 'bone cancer' at the top of the reason list.

The abdominal x-ray that was done for colorectal just happened to capture a partial image of his thigh bone and it is suspicious enough that his orthopedic surgeon wants to do full x-rays asap. There are other possibilities, this is an area where Mason broke his femur 2 years ago so it may just be a bone callus. We don't know yet. Prayers are much appreciated! We're trusting that God knows what is going on and praying that x-rays will show no problems. I will update later this week when we know more, and sometime soon I'll share details about Myelo clinic too.

Wednesday, January 11, 2017

5 Years Old - Mason's Favorites on his Birthday

I decided to interview Mason for his birthday. He's 5 years old today. Enjoy his list of favorites!

Breakfast: Nutella Sandwich
Lunch: Pancakes with bacon or sausage
Dinner: Spaghetti and meatballs

Favorite Movie: Angry Birds Movie
Favorite Cartoons: Looney Toons, Jake and the Neverland Pirates, Paw Patrol
Favorite games: Minecraft, Settlers of Catan Jr.
Where do you like to go? To the zoo and COSI.

What toys do you like to play with? Legos, playdoh.

Favorite song: The Shepherd's Carol, I am a Child of God
Favorite book: Curious George, Three Little Dinosaurs, Peter Pan

What do you like to learn about? Science, especially the experiments.

Favorite animal: Cows, gorillas, cats, and giraffes.

Sunday, January 8, 2017

Osteoporosis Checkup and almost birthday time!

Mason had a great holiday season. Family time, parties, church, book club, art class, and homeschooling filled the season. He also started physical therapy each week with a walker. His birthday is on Wednesday. I'm not sure where the last 5 years have gone but this sweet boy is a joy to know.

In medical land he had his yearly checkup last week for his osteoporosis. The DEXA scan shows that his bone density is better than it was a year ago - hooray! It also is still in the negative numbers so we will keep going with his infusions. I am waiting to hear from his doctor whether he will continue with IVs every 6 months or if we will space it out further.

On the same day he had his DEXA Mason had his IV infusion. He and I got to watch a couple movies and eat lunch while the medication was going in. He's a trooper.

Later this month he has appointments with colorectal and his full team appointment at Myelo clinic. Next month he'll see his orthopedic surgeon for a check up on his scoliosis. It's that season again where we evaluate what is working, what is questionable, and hopefully this time around we'll have nothing unusual going on!

Sunday, November 13, 2016

Mason's Wheelchair Tricks

Things are going well here but I haven't made much time to blog. I took this video of Mason tonight working on his wheelchair tricks. He's a crazy 4 year old boy!

Tuesday, October 25, 2016

HKAFOs and trying new equipment out - with a Video!

A couple weeks ago Mason got new HKAFOs (standing braces) and he has been enjoying them. The fit pretty well and his skin is generally tolerating the braces.

Mason's new glasses are in - with no bifocals! The eye surgery he had in spring has healed up and did improve his eyesight some, so now he just needs glasses, not bifocals. He went back to orange for the frames.

We are still dealing with crazy eczema that won't heal. The doctor has Mason trying a course of antibiotics and antibiotic cream to see if there is some underlying infection but his course of that has pretty much finished with no real improvement. I think the next step may be a steroid injection, but I'm not sure.

Yesterday Mason and I got to go work with one of the Myelo Clinic physical therapists at the hospital to try out new equipment. We have been waiting months on an opening for physical therapy (PT) and are still waiting. We decided that if we could figure out what equipment Mason needs then we can pursue private therapy locally instead of waiting for Children's Hospital. They were talking about everything from a gait trainer (very supportive, lots of potential attachments, but also thousands of dollars) to a reverse walker (minimal support, potentially much less expensive). They anticipated several appointments trying equipment to see what Mason would need and would be willing to use.

Well, I'll let the video show you the result.

Yes, that is his first attempt with a walker. He did great and it was obvious that he doesn't need a gait trainer. He liked walking. It's a great cardio workout for Mason, works his arms, shoulders, core, and applies pressure to his leg bones to help strengthen them and combat the osteoporisis, all important. Now we pursue insurance approval for a walker, which can be a long process. We have a family about an hour away who has a similar walker available for Mason, so we'll pick it up this weekend and use it while we wait for insurance to approve a walker for Mason and for the order process to happen. Then we'll pass the one we're borrowing on to another family who needs it.

We are also working to get Mason into PT locally with the physical therapist he's worked with in the past.

Monday, September 26, 2016

A Growing Boy

It has been several months since I've shared any updates here. Mostly that is because we've had a lovely summer and I have not been able to bring myself to sit and write boring updates. I love that life right now in medical land is pretty boring! We have been outside, gone to a Celtic festival, been swimming, visited the Columbus Ohio Temple grounds, had campfires, enjoyed the Renaissance festival, and just had a relaxed, family oriented summer.

Mason is learning and growing like a typical four year old (4 years 8 mos). He's opinionated, determined, and still shy around unfamiliar people. He loves to use his hands in things like playdoh and thinking putty. He sword fights with his brothers.

He bosses people around and does chores and laughs at jokes. He likes playing Minecraft. He loves to hold his sister's reptiles. This one is Mufasa, a bearded dragon.

He had Myelo clinic this summer and saw all his specialists. One giant good news we got was that his scoliosis has improved. The orthopedic surgeon was surprised but pleased. His curve is now only 13 degrees, very minor. As a matter of fact they would not prescribe bracing for someone who was presenting with a 13 degree curve. However, as Mason already has a brace we have the option of using it. Mason's skin is very sensitive and we've struggled to use the brace without rashes, eczema, and breakdown, but we're trying using it when his skin can handle it, and we're doing lots of play based physical therapy at home to keep building and strengthening the muscles in his core and back. Right now Mason has been dealing with a bout of eczema that even medicated creams are not healing completely.

He's waiting for an opening for PT to try out using a walker. It's just going to be another option during his standing time each day, it would not be practical for him outside the house for several reasons. For one, he can't actually use his hands to do anything (play!)when holding on to a walker. For another, he can't bend over to pick up anything because of the bracing he has to use. This week Mason will get new HKAFOs (standing braces) because he outgrew the old ones. I'm slightly nervous because we made some changes but we think he's ready for less support at the hips, so he's moving from a plastic back piece and belt to a leather belted area. We'll see how it goes.

Today Mason got new glasses. These are the first pair he's had since his double eye surgery several months ago. Now that the healing is officially over his vision has improved. He does still have double vision without glasses as his eyes turn in, but glasses can correct that turn now - without bifocals. This is a large improvement because before his glasses could no longer compensate even with a strong prescription and bifocals.

He also had a urodynamics test (bladder pressure test) today. It was the first one since his medication dose change months ago. He passed with flying colors and the increased dose of medication has improved his bladder pressure. Basically, that means his bladder is paralyzed well enough that it can hold a normal amount of urine without spasms. Spasms are bad because they thicken the bladder wall and can cause reflux into his kidneys, damaging them.

Five years ago when we first learned of Mason's diagnosis before birth I couldn't picture what his life would be like. I just had no idea. While he has had more than his share of surgeries already (18), comes with a few daily medical requirements, and has more than the usual number of appointments, on the whole he is a typical little boy. It's a joy to be his mother!