One Year Ago...

 One year ago...

This Friday will be the one year anniversary of Miles' cranial surgery.  This week has been full of emotions as we remember the events and feelings we were going through at this time last year.  As I was going through the blog posts from that time, tears were rolling down my cheeks.  But I have to say that what is overwhelming to me is not thinking back to the fear and worry that we were feeling at that time, but what is more overwhelming is how much we have been blessed throughout this year.  We had so many people praying for Miles: friends, family, church members, co-workers, the craniocarebears organization, the boys' daycare and their church, and people we didn't even know.  People were praying for everything: Miles' successful surgery, Miles' health, Miles' helmet therapy, safe traveling as we drove back and forth to Ft. Lauderdale, our well being as we cared for Miles, Maxon's well being throughout Miles' recovery, our finances to cover medical bills, everything.  I have a list of about 10 different prayer requests we had, that I emailed out to friends and family, and I can tell you how each of them were answered this year.  Wow, what a year!  God did some amazing work in this story that was just beginning last year around this time.  When we think of all he did and how he answered every prayer, we are overwhelmed with praise to Him, and gratitude to those of you out there that he used to somehow help us through our story.  Here are some pictures from the day of surgery:

One year later...

A year after the surgery and Miles is doing great!  He made it through helmet therapy and has been "graduated" for about 4 months.  His head is measuring in the "normal" range as far as shape goes and the bone is continuing to grow.  He still has a small spot right on the top of his head (where a normal soft spot would be on an infant) about the size of a fifty cent piece where the bone has not grown in, but the surgeon said that could take until he is 4 years old.  I am counting it as a blessing because as long as that is still open, we hope that means that the bones are not re-fusing at this point.  While in helmet therapy, he developed quite the lumpy bumpy head, which I am happy to say is evening out now since being out of the helmet.  :)  Miles is developing on track and is a typical rough and tumble 18 month old boy (much to my dismay).  :)  Because of all he has gone through, I would be happy if he enjoyed sitting and watching TV versus running full speed through the house, wrestling with his brother, or jumping on the bed.  NOT A CHANCE!!  I am counting this as a blessing as well because it shows me that he is a typical child, unscathed by his surgery.  Throughout this past year we grew to know the orthotist very well, who saw us every 3 weeks throughout his helmet therapy, and we also saw the surgeon every 2-3 months.  This summer we met with the craniofacial team, which is a team of 12 specialists including his surgeon who will monitor him until he is about 6 years old to make sure he is continuing to grow correctly with no other issues.  We were very pleased when all the specialists told us they would see us in 12 months.  12 months!!!  That means he is on the "monitor annually" list because he is doing so well and the surgery is so far successful!  Wow, what good news!!!

We thank God every day for what he has done for Miles and for us, and we will appreciate you joining us in praising Him for blessing our family.  We continue to pray for Miles' skull bones to heal completely, for the bones to not re-fuse, and for no surgeries needed in the future.  Thank you for joining us in those prayers as well.  Here are some pictures a year later:

Good news!

Finally getting around to updating this thing again!  Miles graduated helmet therapy about 2 months ago, which was bitter-sweet. We were so happy to have his head more accessible for kisses and snuggles!  But we also felt like a part of him was missing since he had the helmet on for 8 months!  And the helmet definitely became a security tool for us; we never worried about him hitting his head!  After it came off for good, it took us a while to not panic every time he bumped his head. :). But now that it has been off for a while, we are loving it. His hair is growing in thicker now and his scars are not as noticeable. He still has some bone that needs to grow in but it is only about the size of a normal soft spot on a baby's head. And we are told it could take until he is 4 years old for it to fill in.

He is still being monitored by the surgeon to make sure his head is growing correctly, that the bone keeps growing in, and that no new fusion of the bones occurs. We have been seeing the surgeon every 2 months. We just had an appointment today with the surgeon and the cranial facial team, which is made up of about 13 professionals from different disciplines who will monitor Miles yearly until he is at least 4 years old. Today was a a good appointment. All doctors and therapists said he looks great and is on target for his age, meaning that so far his craniosynostosis is not effecting his physical or cognitive development. yeah!  And since he is doing so well, we don't have to see anyone again, including the surgeon, until 12 months from now!  That was shocking when they said that. My reaction was, "are you sure?"  :). I am feeling a little separation anxiety set in after seeing someone from his office at least once a month throughout this past year. :). However, I am thankful to not have to make the 2 hour drive so often now. :)

So, great news today and hopefully we will continue to get that great news every year now. Thank you to those who have been praying for Miles!  He is doing great and we will appreciate continued prayers for no more surgeries needed for his head in the future. Thanks!

2013 Update

Well, it has been about 3 months since I've posted a blog.  The holidays and traveling and doctors appointments and work have kept us very busy.  We had a wonderful Thanksgiving with Nick's sister, Jenn, and her family.  Then in early December we went to New Jersey to celebrate Nick's grandma's 100th birthday!  That was exciting and was a great trip to see friends and family.  Then we spent Christmas in the snowy north, in Michigan, with Grandma and Grandpa and Uncle Ken.  Maxon's 3rd birthday was January 3 and he had a fun party with his friends at the playground.  Whew!!!  Now, things have slowed down just a bit and we are enjoying getting some things done around the house, or trying anyway.

Just before Christmas, Miles had another follow up appointment with the surgeon.  We got good news at that appointment, that Miles' head width/length ratio measurement had just finally made it into the "normal" range.  However, the surgeon said that we have a while to go with the helmet just to keep guiding the shape of the head.  That was not unexpected for us and really quite okay since he still has a large soft spot on the top of his head.  :)  The helmet has never really bothered Miles at all.  I actually think he would feel weird without it.  He is so laid back and relaxed!

It is amazing what the body can do.  The portion of the skull that was removed during the surgery is probably about 70% re-grown already.  We have been able to feel the large soft spot that followed the surgery get smaller and smaller each week.  And overall, Miles is doing great.  He is meeting his milestones and is only going to physical therapy once per month now to treat only slight tightness in his neck.  Each time we take him to the orthotist to get his helmet adjusted, she says he is looking great.  Last time we went, she even gave me the inclination that he may be finished with the helmet by his first birthday.  We aren't getting our hopes up though, just in case.  :)

Miles will have another appointment with the surgeon late February/early March when we will know more information on how long Miles will need the helmet.  We are continuing to pray that his new bone growth does not fuse again, and that his head continues to grow correctly; all going towards the big prayer of no more surgeries!

Looking back on 2012, it was definitely a roller coaster year for us.  We went from the emotions and excitement of having a baby, then the fatigue of having a new baby and a toddler, then the worry and anxiousness of getting Miles' diagnosis and plan for surgery, then of course the stress of the surgery, and then the excitement and happiness of a successful surgery, followed by a little worry here and there about his recovery.  :)  And although there were a lot of stresses in 2012, we were blessed beyond what we could've imagined.  God saw us through everything and provided exactly what we needed when we needed it.  Awesome.

For 2013, we are hoping for a less eventful year :) and a year of good news.  We are calm and confident in the start of this new year as we know that God has his plan for it and it is good.