Tuesday, April 30, 2013

Leo turns 3!

Leo at 3 months old.  This picture was given to us by a nurse in the genetics department when she realized we had no baby pictures of Leo.

Leo at one years old when he came to live with us.

Leo turned 2

Leo today!

Happy Birthday, Leo!  We are so proud of you.  You have come so far. You have defied the odds and overcome the predictions of so many "experts". You are not limited by a label. We can't wait to see what new experiences wait for you in the next year.

Friday, April 26, 2013

I've Seen the Village and I...

I am sure everyone has heard the saying I've seen the village and I don't want it raising my kids.  A lot of times it is said by homeschoolers.  We homeschool.  Always have.  No regrets.  When we began homeschooling we evaluated on a yearly basis if it was the best option for our family and each child.  We still do that yearly evaluation.  When we were considering adopting Leo, I promised Jeremy that if it were in Leo's and our families best interest that we would send him to school when the time came. 

What I didn't realize at the time was that we would be inviting the village into our home on a weekly basis and that the "villagers" would become good friends and role models.  As many of you know, Leo's needs are extensive.  At the age of one, he was developmentally the age of a  3 month old and lower in some areas.

About three months after Leo came to live with us we entered the world of early intervention.  All of a sudden we had 4 strangers/ villagers (aka therapists) coming into our home for an hour each week.  That meant everyday (but Monday) we had someone coming in for an hour to work with Leo and me. Doesn't sound like much except we homeschool and school work goes on even when a therapist is here.  Also, because I don't like guests seeing messes, the living room had to be cleaned up before the therapist arrived. 

In the beginning I wasn't sure we really needed the villagers, but because Leo was initially not officially ours yet (it would take a year for the adoption to become final), we had to at least explore early intervention per our agency.  My initial thinking was both Jeremy and I have college degrees, we have 5 other kids, who are more or less normal, we can figure Leo out.

Leo was evaluated and basically qualified for every therapy.  Our casemanger knowing I was apprehensive promised me the best therapists.  She delivered. 

Four therapists began coming to our home.  Working with Leo on a weekly basis.  A lot of what they said was common sense, but common sense I needed to be reminded of.   They encouraged me to keep on working with Leo even when we were seeing no progress.  Their expertise was invaluable as they helped us get a much needed swallow study and encouraged me to challenge the eye doctor, which led Leo to getting his much needed glasses.  They helped us know when Leo was ready for his walker and ankle braces and they ordered them for us.  They kept me from purchasing needless equipment, explaining to me why Leo didn't need something.  They let us borrow toys and equipment for Leo to try out before we purchased. 

And yes, sometimes, they did know more then I did especially about specific areas such as eating, vision, walking and how it all related to a kid like Leo.  We needed them if for nothing more then the accountability that I knew they were coming and would ask what we worked on that week.  They understood if we had a bad week and accomplished nothing.  They cheered with us over all progress- big and little.  They respected our space.  They respected the fact that there were other children here and that we were a homeschooling family.  They used Leo's siblings (who wanted to be involved) in his therapy.  They were awesome.

Today is a bitter sweet day.  Today Leo has his last therapy as part of the early intervention system.  I am sad to be saying good bye to some of the sweetest women I know.  Today I can say, I have seen the village and you know it really benefited Leo and made his life better. 

I won't lie- I am a bit apprehensive about going to visit a different village (aka special preschool) for Leo next week- but who knows, we have heard wonderful things about these villagers- maybe they won't be so bad.  Post to follow.

Sunday, April 14, 2013

Spilt Milk

Somehow I succeeded in deleting the last post.  Not sure how I did it but it is gone floating around in the cyber world never to be retrieved or at this point rewritten.  We have had a busy weekend filled with a chess tournament, friends over and today sickies.  Leo has learned to share.  Unfortunately he shared his cold with at least half of us.  Only Tyler, Jordan and I made it to church today.

We are in the home stretch of the school year.  Jeremy only has 4 more classes  to teach and we are in the final weeks of homeschooling.  This has been an interesting few months as we adjusted to Jeremy being gone an extra night a week plus having the extra work load of preparing for class and grading papers.  Life is definitely full but it is all good.

Sometimes I worry that we have spread ourselves too thin that maybe we have taken on too much.
I will be honest I would much rather be in my bed then waiting to start Leo's feeding pump for his last feed of the day.  I would rather be sleeping then trying to convince a not so tired dog that it is not time to play but rather time to sleep.  God has been working on my selfish heart.  Teaching me that it is not about me.  I often wish I lived back in the days of Little House on the Prairie where Ma, who didn't have a washing machine or dryer, didn't seem to get her feathers ruffled when the kids fell in the creek or went running through the muddy meadow.  You never heard Ma Ingalls complain that Laura muddied up her floor (maybe there is something to having a dirt floor).  How many times have I lost it over mud tracked into the house or literally over spilled milk?  Something gets spilled in this house at least one time a day.  Leo's tube somehow comes unplugged at least once a week spilling formula onto the floor. It rains, mud enters the house on "not me" shoes.  Yes, we have someone named "not me" living here.

The question I have to ask myself on a daily basis is - "What do I want my kids to remember about their childhood?" Do I want them to remember me yelling over spilled milk?  OR Do I want them to remember that mom didn't sweat the small stuff.  She showed grace.  Now, I can guarantee that by noon tomorrow, no make it by 9:00 AM, someone will have spilt  something in our house.  The question is how will I react to the spill.  I can say, that if I get to bed in the next 15 minutes and everyone sleeps through the night that I will most likely react in a gracious way, BUT if Leo is up and down all night and I don't get sleep- then I just might be cranky and spilt milk might just push me over the proverbial edge.  The thing is that isn't how it should be.  No matter my mood, no matter how much sleep I get, my reaction to a spill should be full of grace.  I should let it go. I should see it for what it is-- a spill that needs to be cleaned up.  My prayer as I go to sleep tonight is that with God's help- I will pass the spilt milk test even it I must take it at an early hour. 

Tuesday, April 9, 2013

When Your World is Shaken

I couldn't resist the title.  Today I found this globe broken in 2 on our playroom table, and it seemed appropriate somehow.   Our world broke a little bit, today.  Or, at least, it was shaken.  More on that in a minute.  

I realized that we have not blogged in a very long time and sooo much has happened these past few months.  God provided us a new van! The new van is, in so many ways, much  better much the one that was stolen.  What man intended for evil, God used for good. 

We also adopted a new-to-us dog.  No dog could ever replace our Emma, but Bubbles has been a great addition to our family.
Bubbles is great with the kids.  She's very playful and has lots of energy ... which means she fits right in! 

Unfortunately, 2013 has also been full of lots of sickness, especially for Leo.  But today a part of Leo's puzzle was revealed to us.  Over the weekend, Leo developed strange jittery movements.  We wound up at the ER yesterday and I was left feeling like I was crazy for going.   They had no answers for us!  We followed up with neurology today and apparently I am not so crazy after all (at least concerning this situation). In the past all of Leo's seizures have been febrile (fever related). Apparently, he is now having seizures more often and "just because".  These seizures are presenting differently.  I know I am not explaining this correctly, but we are still processing a lot of information.  The bottom line is, for the foreseeable future, Leo will be on seizure meds.  We are hoping his seizures can be controlled with just one low-dose med.  In a way it does feel like our world broke a bit today.  We weren't expecting this diagnosis.  We are thankful that the doctor we saw today believed we caught these early and that she was hopeful they could be controlled.  We would appreciate prayers for complete healing of Leo and that these seizures would just go away!

So, 2013 has had a few rough spots.  We said goodbye to Emma, had a van stolen, and now Leo's health has taken a strange turn for the worse.  But God has remained faithful and life marches on.  We continue to pray over our future and God's will for our lives and the lives of our children. We should be finding out in the next 2 weeks Jeremy's exact travel dates for his mission trip to Africa.  We are so excited that he will have this opportunity to go "love on" some little and big ones in Uganda.    

As of now, it is looking like Amanda will be attending our local high school in the fall.  She auditioned for and was accepted into the advanced orchestra.  This is a huge move for us as Amanda has been home schooled from birth.  Lots of prayer has been going into this decision and God has been opened doors confirming for us this is the path we should be on at this time.  

The end of this month Leo "ages out" of early intervention and we will find out what the school district has in mind for him.  Basically, we are waiting to hear if they will recommend that therapy continue in our home or if they will recommend a special preschool for him for a few hours a day.  I am not sure what I am hoping for at this point, but I am curious to see what they recommend.  We can turn down their plan and then they would need to come up with a plan B and C if necessary.

Sometimes it does feel like our world is spinning out of control, or falling apart, but it is in moments like those that we have to rely less on our feelings, and more on what we know is true: God is in control!