Friday, August 22, 2014


Well,  I wrote this post a week ago,  thought it uploaded and it didn't.  Boooo. Miles AND Nolan have been home 3 weeks now.  I say both,  because Nolan was gone so much with family too.

The last three weeks have gone well.  Miles dropped two doses of meds and hopefully one prescription in mid September after an echo.  He's eating like a champ,  amazing what a working heart can do! He's even started baby food,  and is doing amazingly well.  Although it's common to have feeding/swallowing/sensory issues with the low muscle tone, we didn't think we'd have many because he chews on everything,  tolerates tons in his mouth,  and swallows well. 

Nolan has enjoyed the big brother roll more so now.  He climbs in the crib to get Miles' paci, loves to feed him,  and overall watches out for him all the time.  God must've known this plan for Nolan too.  Nolan starts full time preschool after Labor Day and he's quite excited.  It's at an elementary school near our house.  Can't imagine my 3 and a half year old eating in a lunch room.  He's ready though,  socially and academically. We've been working hard on  letters, letter sounds,  and numbers.  Almost has all of them! We took him to his first movie theater a week or so ago.  He. Loved. It.

Miles will go to a new in home daycare that we stumbled across after some failed attempts the first few months. The first one he was supposed to go to bailed on us,  freaked out,  and at 8 days old said she wouldn't take him because of "all of his needs. " She never met him or gave him a chance. Totally illegal (see Americans with Disabilities Act) and downright hurtful.  Our first bout of discrimination, and it took 8 days.  And Ryan says,  we wouldn't want either of our kids to go there anyway.  I don't usually play the Karma card,  but....

The second one we had lined up was with someone from church who was willing to take him with open arms,  no questions asked.  However,  she decided to start a different career early summer so our search was on again.  That same night,  Ryan found someone online at 9pm, called,  and we had a time set up. I told Ryan to make sure she knew about Miles' diagnosis so it wasn't a surprise,  and she also didn't flinch.  Thank God for kind,  serving hearts.  We of course didn't want to settle,  but it worked out beautifully and we certainly didn't feel like we were. She has plenty of experience with preemies and other kids with diverse needs.  However, he's more typical than different,  and we hope everyone else can see that too.

Miles can be crabby,  super happy,  fussy,  gassy, charming,  a good eater,  and loves to be entertained.  Sound typical?  We're starting to sign with him,  but we did a little with Nolan too.

September 2nd is going to be crazy.  Miles,  Nolan,  and I start a new school year. Lots of stress,  fatigue,  worries. . But most of all faith and excitement in our new adventures. Here are a few pictures from the last few weeks.

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