On our way back to the "City of Hope"

    I have seriously fallen off the blogging wagon over the last few months!  In my own defense - the last six months have been very busy with our move back to Wisconsin and a trip to Mayo in February.  Regardless, we moved into our new home three months ago and it feels great to be getting settled.  The house we purchased is very different from any other home we've had in the past... we were very intentional about finding a handicap accessible home for Mason.  This house is quite a bit smaller which makes it much easier for him to get around and there are no stairs.  We also have a counter height breakfast bar which is perfect for his wombat chair.  The rest of us can all sit with him while he is in his chair too.  The person who owned the home prior to us was disabled so there is a ramp that runs from the garage into the house and a roll in rain shower in the master bath.  Most of the doorways have been widened to accommodate a wheel chair as well.  All of these features ensure that no matter what challenges lie ahead of us, we don't have to make many modifications to our home. 

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!