Monday, June 17, 2013
On our way back to the "City of Hope"
Overall Mason is doing okay. We spent a very long week at Mayo Clinic in February but the results were worth it. His body cast was cut off and he was fitted for a prosethic spinal brace which he wears whenever he is awake. This also means that we can bathe him every day!!! And this weekend he got to enjoy his first adventure running through a sprinkler - which is something he couldn't do at all last summer because of the body cast. Henry is thrilled that Mason can take baths and play in the water with him... its funny how much we appreciate these little things now.
In April, Mayo Clinic completed the final analysis of Mason's genetic study. Although this is a very rare disease and there aren't that many people that have been diagnosed with this mutation, Mason's doctors have warned us that his mutation can be progressive with age. His weakness and mobility may get increasingly more difficult as he gets older. While this is not the greatest news in the world, we are choosing the focus on the present. Someone taught me years ago that our children are really God's children first. Since each child is a gift from God, our job as parents to best care for our children and let God do the rest. And that is really what Aaron and I are trying to do.
Today, Mason and I will be traveling back to Mayo Clinic to meet with 10 different specialists. We will be talking about his newly enlarged tonsils which need to come out ASAP, new drug therapies, his developmental delays, his spine and when to seriously pursue surgical growing rods, a long term therapy plan, foot braces, his tube feeding schedule and weight goals. Mason also started snoring recently which means we will also endure another sleep study... to determine what changes need to be made to address his central apnea.
Henry is doing great and enjoying the start of summer. He is officially done with Kindergarten and has started t-ball, golf and swimming. He is so busy and yet he never tires. We are really focused on making this summer about him... because he has been dragged to so many doctor's appointments, therapy sessions, etc. for Mason over the last year. So this summer, its Mason's turn to be patient while we attend Henry's activities.
Thank you for reading this update and caring so deeply for our family. For those of you that pray for us, we very much appreciate those prayers and we feel them working.
Have a great week!
Sunday, December 30, 2012
We choose HOPE
- After 13 months of speech therapy - Mason started talking in early July. All along the words were probably swirling around in his head but he is finally able to form audible words with his mouth. He has a long way to go but we are so excited about the progress he has made already. Henry and Mason have also become more bonded now that Mason is able to communicate.
- Thanks to Hammond Drysuits, located in the UK, we were able to have a custom Hickman Drysuit made for Mason. He looks like Aquaman in the suit and it takes two adults to actually get him into it but he was able to enjoy the pool on our first family vacation this summer.
- Henry started Kindergarten in the fall and loves school! We are so excited to hear all about his day when we pick him up. He seems more grown up all of the time and he continues to inspire us everyday with his kindness towards his brother.
- Mason is currently in his fifth body cast. The casting is definitely correcting the curvature in his spine however the doctors have warned us that (because of the disease) his spine will worsen the moment we stop treating it. In February, he will transition from body casting to a 23 hour hard brace. The brace will give him a "break" from casting and will allow him to take a bath each day during the one hour he has the brace off.
- We also experienced a lot of trips to the emergency room during December. Two different sets of stitches needed on his head due to falls and one dislodged mic-key button - all in three weeks! Needless to say, he is back in his helmet full time now:) This child is seriously aging me... it will be a miracle if I am not completely grey haired by 40.
- While we are so glad that Mason is finally using words, we didn't realize how hard it would be to respond to things like "I go home" - when we are at the hospital or "cast off" when he is tired at the end of each day. We didn't plan on fighting with him at night when its time to wear his oxygen tube and his feeding tube. So now we must navigate these very valid frustrations.
- Aaron has been the most amazing, supportive husband I could ask for. He continues to show me more grace than I deserve most days and he is an amazing father too. God has answered a long standing prayer for Aaron this year - he was recently offered a Brand Manager position with Kimberly Clark. After a long career with MillerCoors, he has decided to accept this exciting new opportunity and will be starting his new role in 2013. This also means that we will be moving AGAIN but we will be moving home near family so we are certain that the moving insanity will eventually be worth it.
Thursday, June 21, 2012
Here Comes The Sun...
1. Henry turned 5 years old on May 30th! He is pretty proud of this new number and reminds me everyday of this major milestone. His birthday celebrations were plentiful between preschool, my family and Aaron's family. He was spoiled rotten as usual but in the end the thing Henry wants more than anything is time and attention - FROM EVERYONE, EVERYWHERE!!! So while the gifts and cards were great... he still really just wants a stage and a huge audience :)
2. We also completed our first overnight trip away from home during Memorial Day weekend. This was a pretty big deal for all four of us mostly because we have not traveled anywhere overnight in the last four months besides Mayo Clinic. We figured out how to pack and travel with the oxygen, pulse oximeter, feeding pump, etc.! Lots of gear to drag along but in the end it was totally worth it. We had a fantastic visit in Appleton with "Grandma Colleen, Grandpa Davison, Uncle John and Daisy". They all spoiled us rotten with great food, lots of laughs, golf for Aaron and a pedicure and shopping for me:)
3. Father's Day weekend was one of the our best weekends too - with the best dad ever. While Aaron did not get to golf on Father's Day weekend, he did get to play A LOT of golf the week before. Aaron and I were able to spend FOUR hours out of the house on a date without the kids. This has not happened in at least 6 months. It was wonderful! Hopefully we won't have to wait six more months to do that again.
4. Mason is officially 2 1/2 years old this week and he is doing amazingly well in his first cast. He is fearless and he longs to keep up with his big brother. His determination and spunk are what get him through each day. He is finally saying "Mommy" and "Daddy" and yesterday for the first time ever he actually called "Mommy" from his crib when he woke up. He is also imitating short words. While he doesn't understand how to spontaneously communicate yet, he understands a lot of what we are saying to him. Next week we will head back to Mayo Clinic for more appointments and the application of Cast #2.
5. Many people have asked how I am doing... the short answer is that I am "fine". But to be honest... I am getting there... one day at a time. I think I am finally passed the stage of being totally pissed off about this experience. Or maybe its just that I am tired of being bitter. While I know that God has big plans for me and my family, I am still grieving the life I had pictured for our family of four. I am quite certain that God's plans are MUCH BETTER than whatever I had planned in my head. But right now, the days feel so long. There are lots of funny moments... but they are still long days. It feels very awkward to write this... to say it out loud. But I feel its important because I think there are many mothers out there that are afraid to admit that they are mad or sad about the challenges that come with their special needs child. I plan on sharing more about this topic as God continues to work on my heart...
Wishing you all a happy, healthy and safe 4th of July!
Sunday, May 13, 2012
Our Second Trip to Mayo Clinic: Cast #1
Saturday, April 28, 2012
One Giant Thank You Note
Anyway, none of that really matters anymore because over the last six months we have had to get a lot more comfortable with asking and receiving help. I am so very behind on Thank You notes too... so this is one big Thank You note to all of you!
Thank you to Grandps - I am not sure who you have spoiled more - Henry or me with all that you have done for us in the last three months! P.S. If you haven't tried Grandps' Swiss Steak... its fabulous:)
Thank you to our parents and family for their prayers and phone calls. Thanks for watching Henry and helping with whatever we need.
Thank you to Erik and Cristi for helping us so much with Henry and for calling as often as you do just to see how things are going. It means more than you will ever know.
Thank you to Eileen for taking the time to drive two hours and spend the day at the hospital with Mason and I during our most recent casting trip.
Thanks to Curt for taking so much time to get our house in such wonderful shape. Thanks to Angie for loaning him out so much lately too!
Thank you to all of our Willow Crystal Lake friends - your friendship, prayers, smiles and kindness have made this entire journey so much easier.
To my girl friends in Crystal Lake that have filled my freezer with meals - thank you! You have no idea how much that meant to me and how little time I have had to cook the last few months. Thanks again!
To my new friend Axi - thank you for the beautiful pictures of our family. Thank you for hugging me, for really seeing me... when most days I really feel invisible. You are an old soul... and I cherish this quality so much in other people.
Thank you to all of our extended family and friends from high school, college, work, Plover, MillerCoors, Accenture, United Way, etc - that have reached out to us with emails, phone calls, texts and facebook messages. Each time someone reaches out to offer their concern means so much!
Thursday, March 29, 2012
Our Trip to Mayo Clinic!
Our trip to Mayo was excellent and we learned a lot. Mayo Clinic is an amazing place. The staff are so patient focused - its really like nothing I have ever experienced before. We were so blown away by the doctors and nurses, the facilities, the art and all of the people that travel from all over the world looking for medical answers.
1. Mason was evaluated by three different neurologists. They ordered a smattering of tests and concluded that his diagnosis is correct but the medication is wrong. The majority of patients diagnosed with CMS respond well to Mestinon. However, this drug is actually making Mason weaker!!! So the doctors told us to stop giving him Mestinon immediately. Its been almost two weeks since his last dose and we have seen some positive changes. Mason is hardly drooling at all and when he tries to climb stairs he is no longer dragging his head. He is still weak but the quality of what he can do when he feels good is much better since we stopped the Mestinon. Its been a treat for me as well - since I don't have to constantly watch the clock - waiting to give him the next dose.
2. Based on the test results, the neurologists at Mayo have a pretty good idea of what gene mutation is likely responsible for Mason's condition. They gathered samples from Aaron, myself and Mason and they are currently working to confirm their hypothesis. They have warned us that this could take months. They have also warned us that they could be wrong... and if that is the case they will have to look at other possible genetic mutations. If and when they can determine what gene is responsible - at that point we can determine what other drug therapies might be possible to help Mason with strength, energy, speech and feeding.
3. Mason was also evaluated by the Orthopedic Team at Mayo Clinic and those results were not as positive. We learned that Mason's curve is much more severe than we originally told. In Chicago, all of his x-rays were taken in while he was laying down. The doctor at Mayo informed us that Mason needed to have an x-ray while standing up in order to clearly see his curve. Therefore, his curve is actually 60 degrees! Not good news since he is only two years old. The doctor also explained that right now Mason's ribs are growing into his spine and that if we do not aggressively treat the curve right now - his lungs will be affected next and his pulmonary function will be affected if the curve progresses beyond 70 degrees.
So what do we do now? They have recommended that Mason be casted as soon as possible. Its taken us two weeks to get used to the idea but of course we are moving forward with the casting process. We will be traveling to Mayo Clinic every other month from now on for casting. I'll write more about this as we go. Based on all of the research and information we have received so far - this spinal casting thing is going to be a real doozie. Mason will be set in a cast that will go from his hips up over his shoulders. Each cast will last 60 days... and he cannot get it wet... which means no baths. Yuck!!!
Maybe we will all give up bathing for awhile...
Monday, February 27, 2012
G-Tube Update
Getting used to all of this will take awhile... there are so many parts and medical supplies are scattered throughout our house right now. The doctor has recommended that we feed Mason through his G-tube at night - over a twelve hour period. So far, we have had a lot of leaks and tons of laundry to do. However, last night was the first night that there were no leaks!!! So Mason woke up with dry clothes, dry sheets and a very full belly.
Next week, we will be at Mayo Clinic in Rochester, MN. This will be our first visit to Mayo and we are very excited. The Pediatric Neurologists at Mayo Clinic are among world leaders in research studying genes involved in congenital myasthenic syndromes and developing cutting-edge therapies to treat congenital myasthenic syndromes.
The picture above was taken about two weeks ago before the g-tube surgery. Henry is in charge of turning on the Pulse Ox machine at night for Mason... these brothers were really made for each other :-)