So much has been going on!! Which is half of the reason for the lack of blogging lately but also because I am so honest in this blog, I kinda put it on the back burner so all of my family readers wouldn't check me into the loony bin for opening up my stressed-out mind :) And, man, was it ever stressed...the last stay in October for Bruce in Children's Mercy nearly done me in. We were not expecting such complications and we certainly weren't expecting the team of doctors to fail so poorly at communication with each other and cause a ruckus.
But, they did. And we survived. Because that's how we roll!
Hanging with momma!
The last couple months, Bruce has been making tremendous strides with his health! His last MRI in November showed great results that the abscess was nearly gone. His infantile spasms were still occurring at the time but since Thanksgiving, they have been controlled with medications and the neurologist was optimistic then they would disappear altogether as the abscess dissolved. And we're in the middle of January with no issues to speak of!! Tomorrow, bright and early, Bruce has an EEG and a neurologist follow up so we are very excited to see what that has to say. And a little apprehensive.
Other great results have been in physical therapy. We tried a couple different places but settled with a lady at Children's Mercy (imagine that!) who has seen another child with Pompe before. In our search, I was explaining a lot what the disease was and what other results have been but Judy at CMH knew all about it and honestly, was very worried when she saw Bruce's case. The first appointment she shared with me that when she watched Bruce and I in the waiting room that day, she knew already Bruce was doing MUCH better than most infants with Pompe and she was happy to see that! We are very blessed!
Bruce has P/T every week and that will continue for some time. Eventually the sessions will taper off and we'll move over to the rehab center but for now, it's weekly P/T with Judy. When we first started only last month, Bruce was very 'iffy' about his feet because he pretty much didn't know he had them! When you spend so much time lying in a hospital bed, I guess your feet are the last things you really think about. Since working with him, he now knows he has two rather large feet and loves to pull his socks off...he certainly gets that from his barefoot momma!!
We also work on weight bearing and yesterday she introduced leg splints much sooner than she imagined! They are pretty cool looking - red with rocket ships. When daddy saw them he said they look like the ones he uses for baby calves when they have wobbly legs, minus the rocket ships. I'll never forget, many moons ago in the beginning of our journey, when we saw a baby calf running out in the pasture all cute and awkward-like he said, 'That is going to be what our kids look like!' I reckon he was spot-on!!
Bruce's first Christmas was fantastic! It took me nearly four days to organize and put all of his toys away but he made out like a bandit and is a very loved little boy! I'm excited as he grows to teach him what Christmas is all about and that while over-the-top gingerbread mansions and over-indulgence on grandma's baked goodies are great and all but really the day is for Jesus and to celebrate him in our lives! I will never forget how blessed I am and I want to share that with him!
2011 was a year I am sure I'll never be able to forget. Even if I were to try. It came in peacefully, roared like a freight train throughout and left us in the end stronger than ever before. It all did happen. John's dad beat prostate cancer. Bruce entered this world the same weekend as the Joplin tornado and left an aftermath that seemed at times to rival mother nature's fury. My brother returned home safely from his first Afghani-hell deployment and spent Christmas in Missouri - the first time since becoming a Marine. I left my first after college job as a big girl and said 'see you later' to the great guys I worked with. My sister got engaged to a perfect man for her I am proud to call Uncle Jake. Relationships were put through the ringer.
BUT....!!
I became Momma to a child who has taught me more about life, myself and faith more than anyone before. I feel stronger, wiser, a little more tired than usual :) and I think if I had listened to up above sooner, I would have questioned less and gone with the flow better. I wouldn't trade a dang thing for the experiences I had in 2011 and I am forever thankful to God for bringing Bruce into our lives!
Here's to 2012 and the memories I can't wait to have with my family!
