Surgeries and Such

I haven't posted in a long time but that doesn't mean things have been quiet.  I'm not sure we'd know what to do with ourselves if we ever had some down time!  Ha!

A few months ago we decided, after meeting with Asher's urologist, that he needed a simple, out-patient surgical procedure to help fix some things that would hinder his independence as he gets older.  He went in for the short procedure and came out a sore but happy boy.  There was the normal stress of caring for the wound and making sure everything was healing correctly, administering meds and cuddling.  Not too hard, we're pretty old hands at that stuff by now.

A few weeks later we met with Caedmon's urologist, who happens to be the same urologist Asher has, and discussed a complicated surgery that Caedmon needed in order to be more independent as he gets older.  We decided to schedule the surgery sooner rather than later because we wanted him to be healed and happy when Kindergarten starts in the fall.  He spent five days in the hospital, four of those fasting.  Everything went according to plan and he is healing well and doing great.

I've been processing a lot in my head over the past few months.  It's never easy making the decision to send your child in to surgery.  Sometimes it is a litle easier, when things are very straight forward and obvious but other times it would be so much nicer to be able to wait until your child grows up and can make the decision for themselves.  With Caedmon this surgery is not reversible, it is a newer procedure, and medical advances seem to be happening so much faster, what if there is a better option when he grows up?  There is so much to consider, so much to take in and sometimes the decisions need to be made much faster than I would like to make them. 

 I find myself falling back more and more on the promise that God will work all things together for good so I can move on with confidence that we have done what is best for our children and rest in the hope that everything will come around right.  

Life is just beautiful and messy and never as easy as you imagine it will be when you are dreaming and planning your future.  That's what makes it so much fun!

Just What DOES He Know?

This has been a question that has been rattling around in my brain for a really long time, well two years at least.  What exactly does Asher understand?  Is he aware of what is happening around him?  How does he process information?  Can he connect all the dots?  Some of the dots?

Quite often, Asher will be staring off into the distance as I talk to him.  He seems completely oblivious, happy in a little dreamworld or something, when he will all of a sudden sign something I've just said.  He is obviously right there with me.  Sometimes he'll come out with signs I didn't even know he knew and have no idea where he picked them up at but when I check my signing resource he's spot on.

Last night our dog went missing.  We didn't realize she was gone until suppertime, by then she'd probably been out roaming for more than two hours.  The older kids and I talked about it and prayed for her at the supper table, Asher munched on his supper and smiled at all of us, no recognition that anything was amiss.  He went to bed just as easily as normal and had a great sleep through the night.

This morning Adam brought Asher into our bed to snuggle with us.  The first signs he said were 'puppy' and 'sad'.  We were blown away!  That little fellow is no sloucher!

It is beautiful to see how present he is!  It's also a little terrifying, to be honest.  What happens when he runs into someone who is unkind, rude, disrespectful?  It's so easy for us, as 'normally-functioning' people, to write off those who have mental disabilities as clueless, absent, ridiculous.  And if we see them in that way then teasing, bullying, abusing doesn't really matter because it doesn't really affect them anyway.  And we don't have to feel disturbed when meanness happens in front of us, we can go comfortably about our business.  But when we start to see how much they understand, how much is going on in the deeps of their mind, we cannot be so comfortable anymore.  We actually have to start caring because they care, we have to be upset because they are upset, we have to take a stand because they are trying to but they don't have the force to back it up.  We need to be that force.

So, how much does Asher know?  I have no idea.  But I'm pretty sure he will find ways of letting me know and surprising me all the time.

Happy Birthday, Asher Boy

Two years with our Asher!  It's hard to comprehend he has only been with us for such a short time.  It feels like he's always been a part of us, this little family.  This sweet one has captured our hearts.  I don't know when or how it happened but this toddler brings so much we didn't even know was missing until he came.  There is a peace and joy that seems to fill our home with him around.  I never understood what people were talking about when they told me what a blessing it would be to have a child with Down syndrome but I'm starting to get it.

Asher has come so far in just the last month.  He's started to stand up in the middle of the room, he's tried taking a few steps too!  His sign language has taken off.  He now uses around 30 signs on a regular basis and seems to learn new ones everyday.  We love being able to understand how his mind works and what he's thinking.  What an incredible gift!

Happy birthday, Asher!

A Great Christmas, A Bright New Year

I am continually so thankful for the communities I have become a part of.  It's awesome to be able to meet amazing people in the midst of struggles similar to your own.  It bonds you more than most other circumstances in life.

We have been struggling a bit financially with the responsibilities of having two boys with complicated special needs.  It's been difficult at times to fit all the puzzle pieces together and get all the resources to give our kids the best possible start to life.  Six months ago we were discussing what could be done and I had an internal nudge to ask my new on-line friends if there were any options we hadn't heard of. I heard back immediately from people in our state with options and ideas.  I called one of the ladies who had a very extensive knowledge of the process and procedures to get the ball rolling.  Her time and information were invaluable.

Right before Christmas our two youngest boys were accepted into a secondary insurance program that will cover any medical costs our primary insurance doesn't cover for very little out of our own pockets.  It also will cover mileage to the many medical appointments we got to far from home as well as some of the supplies we need that are above and beyond what a normally developing child would need.

In the process of getting them hooked up with that, Asher was accepted into a county program that assigns a social worker to him, who informed us that they still had grant money left over and, if we could get a list from his therapists, order and pay for the items before the end of the year the grant would cover the costs. So we have been able to get a number of items for Asher this Christmas that we would not have been able to afford on our own.

We are now waiting for all the paperwork to go through to see if I can be paid as a sort of medical assistant for the boys through a grant offered in our state.  It won't be a lot but it would help a lot with the month to month bills.

It's awesome how God answers prayers and has a hundred million ways to answer when we are feeling frustrated and at our wits end.  I am feeling really grateful starting this new year with bright hope and excitement to see what will happen next.

ENT Does Not Mean Ent

Warning: Lord Of The Rings reference in title.  This post actually has nothing to do with Lord Of The Rings, it is merely the ramblings of a tired parent.

As if on cue, the night we heard from the sleep clinic Asher started gasping in his sleep and waking up crying in fear.  This has happened every night since.  So, when we called to set up our consultation session with the doctor in charge of the sleep clinic and they told us the first opening was in mid-February, we were understandably concerned.  After we explained to them what has been happening, they put us on the top of the 'Cancellation Wait List'.  So far, his appointment has been moved to mid-January.

The nurse at the sleep clinic made sure to tell us that Asher won't die in the night because of these gasping fits.  For some reason this was very reassuring to Adam and served to freak me out.  Not sure why the difference there.  Maybe it has something to do with Adam always being the one to see the worst case scenario right from the start and me being a bit on the optimistic side; he had already seen all the things that could happen in his own imagination while I was tripping blissfully along thinking it'll stop sometime soon.

Anyway, we've learned that if we can get into him as quickly as possible when we start hearing the gasping start, he won't cry and will fall right back to sleep.  It's a little hard to do at 3 or 4 in the morning when we're really groggy but we're getting it down to a science.  He also seems to be getting used to it and has been able, on occasion, to fall back asleep after an episode with little to no help from us.

Last week, when I was sitting in on Asher's speech therapy appointment I talked to the therapist about our concerns and what's been happening.  She recommended a local doc who also works at Children's, an ENT doctor who has seen a lot of the kids connected with the therapy office.  He can see Asher at the end of December.

The ENT appointment will just check the obstructive sleep apnea.  We still will need to get in to the sleep clinic to check his other apnea and the REM sleep he is missing out on.

That is all the update I have for now.  Caedmon continues to chug along and heal. His energy is back and he is as rambunctious as he can be with a full leg cast on. You can't keep that guy down for long.

Sleeping Is Good

Yesterday we learned that Asher has mild forms of two different kinds of sleep apnea.  They are mild enough not to be troubling to the doctor.  What is of greater concern is that he is not able to get into and stay in deep sleep.  Asher seemed to want to confirm this by waking up and staying up for 3 hours last night.  There is some question as to whether the environment and condititions of the sleep study itself played a roll in the lack of REM but we have a consultation scheduled so we can get some questions answered and find out what we can do to help him SLEEP!  It is a really good thing, Asher, if only you would realize it!

Asher continues to make leaps in his development.  He is standing a lot more, signing more, making more varied sounds and curious about everything.  A few days ago he surprised us by climbing up into a kid chair and then standing up on top of it, holding on to the stair rail behind it.  Not safe, but it's nice to see him showing initiative in exploring. :-)

Today, he heard the noise of our neighbor's snow blower.  He got himself right up on that chair and started shouting hello to him and knocking on the window.  He was pretty proud of himself.  Now, how to keep Curious Asher from hurting himself in all his curiosity.

Snow Therapy

Caedmon continues to heal.  He meets with his orthopedist tomorrow to get a hard cast.  His energy improves daily, as well as his appetite.  Each day he's commented less often about pain and last night was his first solid night of sleep.

A few days ago we celebrated Caedmon's birthday.  He wasn't sure he wanted to celebrate but finally decided presents would be okay.  He didn't care for the chocolate cake or the special dinner we made, poor, recovering body, but we scored big on a remote control car that can run into anything and keep going.  God bless the makers of that car, it keeps him happy for large chunks of time and I don't have to chase it down and fix it a million times a day. :-)  He's also been playing with legos, painting, setting up fights between Superman, Sullivan (from the Monsters movies), a babydoll and Christmas mooses and making me lists, mostly of E's, O's and C's, for shopping.

We've been figuring out how to go about our day with a less mobile boy.  It definitely slows our day down a bit and our regular routine has needed to be tweaked.  It has been a good mental stretch, getting creative with life.  One thing we could not miss, playing with snow.  Caedmon loves snow, especially throwing snowballs.  It snowed on his birthday, thank You, God, and this morning we woke up to even more.  So, after breakfast we wrapped his leg up in plastic, laid some towels down and brought the snow to him.  He made a snowman and threw lots of snowballs.  He loved it!