A brand new adventure...

I've learned to live one day at a time.  Not because tomorrow's something to be feared or not to be planned for, but because if you cannot enjoy TODAY, then looking for tomorrow will do no good.


In the same sense, looking out thirty or fifty years is absolutely necessary to plan for our future and for our children, however looking forward 6 months to plan for our immediate is far enough. 


In six months I will be a 30 year old mother of nine with six children with special needs.  That's a wonderful blessing in itself!  In addition I will be the 'lead teacher' for my classroom of seven children ages 3-10, six with special needs.  Yes, those are our very own kids... who we will be homeschooling!  Kristopher will continue traditional school and I have no doubt that in 6 months I will still be a happily married wife to my wonderful husband :).


Six months is enough to look out to.  Looking further than that on a regular basis will make me a bit cross eyed and may begin to hyperventilate!!  


Our homeschooling adventure began this past September with Brianna and will broaden on Monday when 3 more of our children begin their home education.  James, Micah, and Kristopher will finish out this year in public school. 


What a wonderful and FRIGHTENING time this is.  We're so very glad to be walking the path that God's led us on, even if it appears to be along the side of a cliff.  We've walked that cliff-side before and with God's guidance we never have to fear the edge.  


Jeremiah 29:11 "For I know the plans I have for you," said the Lord.  "Plans to prosper you and not to harm you.  Plans to give you hope and a future."  


Philippians 4:13  "I can do all things through Christ who gives me strength."


We've been contemplating this for quite some time.  Now's the time that God said "GO."  He's faithful to provide at the same time, and we have a complete curriculum ready to go thanks to a good friend.  We also have support for upcoming appointments such as field trips for our other children so that we can continue to be active with them while our other kids are adequately cared for.

It's a brand new, scary, and wonderful adventure that God's taking us on.  One day at a time.  Enjoying each moment, but knowing that at the end of a rough day... there's usually a brand new one waiting for us on the other side :)

Anyone have experience with this?

We're running in to some more closed doors as far as finding out if/what is going on with our oldest and newest child, Aleksa.  There are tons of cues throughout EVERY day that suggest that she isn't hearing well.  She won't respond when in a different room, even just 10 feet away from us, unless it is said VERY LOUDLY to her... and then we're still not sure she's hearing WHAT we're saying, just is taking a cue that us yelling to her with her name attached (she does respond well to her name) means that she should do something.  She also can look at us while we tell her something that we know she understands, like "take your shoes off" and sometimes will do it (generally this is when it's inside of her realm of a routine), but just as often will sit and look at us with a confused look on her face.  We can say it over and over, but until we LOOK at her shoes, sign "shoes off" or point to her shoes, something that physically signals what we're asking, she doesn't appear to hear what we're saying.

It's strange, because some days she may do exceptionally well with minimal amounts of physical signing, pointing, and direct hands-on prompting necessary.  Other days, it seems she doesn't hear anything all day long.  It's also difficult because she has VERY GOOD adaptive behavior.  Imagine this scenario: You're 5 years old and someone drives you to a new "place to live" and drops you off with 80 other children all of whom are older than you (you used to be the oldest in your small group of kids you lived with) and many are as old as your previous caretakers.  You quickly find that someone will physically punish you for not following "the crowd" and doing what everyone else is doing.  So you figure out pretty quickly that when you see everyone going to do something that you, too, should go do it.  You learn that when someone gives you a direction, even one you don't understand at all, that you look around and try to figure out what they're referring to, and if you can do something-- anything-- you try it.  This was Aleksa's reality in the institution.  You conform, figure out the routines, and if someone directs something at you, you try to figure out what they meant.

In new situations, though Aleksa will also frequently try to get away with whatever she can... she tends to try to figure out what wo't get her in trouble.  She WANTS to understand.  She LIKES to help.  She will, when in a mood to do it, TRY to please at all cost.  However she will also look at us and be obviously searching to try to figure out what we're saying... and be unable to even when it is a very simple direction that she knows how to do and was able to do a day or two prior...

So... everything points to hearing.  Problem being, She has had an OAE that she failed.  Then she failed the Tympanogram in an "unusual pattern" and the ENT asked if we wanted to try tubes in her ears.  We said YES, if that could be the issue, let's take care of it by all means.  She got tubes.  Nothing has improved (and that was a month ago...).  She also had an ABR done while she was sedated.  The ABR showed "normal to low-normal hearing with her left being a little worse than her right".  The doctor said that's fine, shouldn't be any big deal, and come back again in 6 weeks for another OAE and exam.  We saw him this morning.

I asked his opinion of what he thinks her response, or lack of response more appropriately, was due to.  I will share his answer, then I'll share what he appeared to be saying :).  He said that it's probably just auditory processing and they can't test that in a nonverbal child, so there's nothing else we can do.  What he's implied in the past and appeared to be saying this time as well was this: Your child is mentally retarded and can't process words because of it.  She's not going to learn to, so why are you wasting your time?

I understand auditory processing.  One of my siblings has issues with it and has had to overcome a lot to be able to do well in some areas, but as he went through school with this "learning disability" as it's termed, he also was in the gifted student program.  Auditory processing has little to do with cognition or ability to think.  It is a real and diagnosed processing difficulty that occurs in people of ALL levels of intelligence.

I'm not trying to pretend that Aleksa isn't severely delayed.  I'll be the first to tell you that she is very delayed, and that she had no one really talk TO her or have expectations of her on any regular basis for 8 years of her life.  She has not only a lot of baggage from past hurts and neglect, etc, but she also has a true lack of exposure.  Could that be the reasoning?

Here's where we're struggling right now... we KNOW that Aleksa is very physically capable. She can dress and undress, toilet independently, eat with different utensils (maybe not super clean, but still...) and can "follow the crowd" really well when she's being properly motivated and understands that there is an authority person there.  She knows how to play appropriately with some toys and does great with routines such as putting her clothes and night time diaper away in the trash and hamper in the morning, or coming to the table and waiting to pray, helping other kids to do simple tasks like  putting toys away or going up or down a step (even though she herself isn't very stable most of the time...).  We know that there are physical limitations that are just from a lack of exposure for so long, and cognitive and "higher order thinking" that are affected both by Ds and by her past.  There shouldn't be significant language limitations at this point (14 months home) however we still use very BASIC terms with her when making requests so that we're sure that we are using words and terms that she understands, and very short sentences, etc.

We don't want to "pass this off" as just a behavior, an attention thing (sometimes it may be, but sometimes she is distraught at not getting it and really is TRYING to understand), or a lack of ability to comprehend unless we have looked at all the other possible causes that it could be.  As far as auditory processing goes, she would have to have SEVERE issues with auditory processing to be having as much difficulty as she is with all of this!  APD generally has ways to 'train' the brain to understand, and is often a first and last thing dropped, that sort of thing, not two or three words that someone simply cannot hear/understand/something...

Since it all is acting just like she can't hear... but her hearing tests appear to say that she CAN... what else could the problem be?  She's so frustrated.  As are we!  She only mimics sounds/2 syllable rhythms (mama, bah bah (for bye bye), etc) when she has SEEN our face, or knows the social appropriateness since we've taught her (say "hi", say "bye" while having her look at our mouth and try to make the words).  SOMETIMES she will mimic a 'random' sound.  Not often.

There's so much more... but that's all for now.  Would be very interested to hear what others have experienced in a similar matter... Thanks!

The after-bath lineup...

Where everyone's diapers and pjs are out and waiting for little people to fill them!  And even better... All our pull-up wearers now dress themselves completely, and our diapered crew just needs help getting their arms in!!  We've all been working hard!

Organizing Life

The last two weeks I've been slowly starting to feel better! YAY!  I'm still not quite up to par, especially in the mornings and late at night, but hey, if I can have most of the day that's a pretty good start :).

Now that I'm feeling better, I'm looking around going YIKES! LOL!  So many things I haven't done because I haven't had the energy or the time, but now need to be done!  We've got a big project starting in the next few weeks, and we need to prepare the house for that to start.  Right as that project is finishing, it will be SUMMERTIME!  With summer means summertime activities, and for us it means starting up school activities at home too!  On the tail end of summer will come the birth of our 9th child :).  And when I write it that way, instead of being 22 weeks before the baby will be here (2 weeks early... scheduled c-section by necessity...), it feels like it will be more like 8!  And of course after that is another 8 weeks of recovery that I have to think about beforehand.  I know there's plenty more time, but I've realized that I need to get life a little more organized or I'll be going nuts pretty soon :)!

First off... our first project!  We are very excited to be able to add a bedroom and a handicap bathroom on to our home!  In actuality, we will be renovating an existing bedroom and changing it in to the handicap bathroom as well as a hallway, and the new construction will consist of a bedroom and a 'study' (no closet).  We currently have 3 bedrooms that the kids share, and this will give us a 4th.  It will also give both Wesley (and us!!) and Emma much more usability of the bathroom with a little more independence.  Right now, Emma cannot get on or off of a toilet on her own.  The new bathroom will have rails and our existing step to use for getting on and off the toilet.  Showering Wesley can sometimes be a sport, and as he grows it will be even more of a blessing to have a roll-in shower with a very open design.  We will be looking for a toileting system that can hold Wesley up on the toilet as well, since he can neither sit nor support himself on the toilet with his hands.  We hope he may be able to have some degree of toilet training once that's even an option.

The thing I'm thinking Wesley will appreciate the most is a SINK that we can roll his wheelchair up to!  Wesley has never been able to wash his hands in a sink unless he's being 'dangled' over it!  We hope he will be able to access the sink from his wheelchair and actually WASH them for himself!  I realize that sounds minor and petty, but in his world of dependence, every little bit of 'normalcy' and independence is a HUGE step forward!  Construction begins early March and should be completed by mid-late May.  We've been working through this concept for months now, and are so thankful it's all coming together now!

To prepare for the construction, we'll be losing a bedroom until it's complete, and we'll be losing a bathroom for some of the time (they will tie in to the plumbing in our existing bathroom so will have to tear it up, all the walls and flooring).  Some of the kids will have a 'temporary' bedroom in our play room.  Should be simple, right?  Not exactly... We don't have any blinds in our playroom, and it's got HUGE floor to ceiling windows!  In addition, we will have to disassemble two bunk beds (one is going to a different bedroom, the other relocating to the playroom), and a crib (toddler bed) to move them to the new locations.  Not exactly a quick endeavor... but one that will be well worth it in the end!!

As the construction winds down, our summer planning will all be coming to a head!  We've always "homeschooled" the kids during the summer after determining that the summer program at school (we did it once...) wasn't exactly going to help the kids since it was often new teachers, new classrooms, and possibly even a new school...  This year we'll be doing more formal homeschooling (as formal as you can get in the summer and with 8 kids!) during June and July.  More like what I do with Brianna on a regular basis... but x7 or 8!  Kristopher doesn't need it nearly as much as the other kids, but inevitably we'll be doing activities for him as well :).

Throughout the summer months we'll also be prepping for our new little one to join us, and therefore prepping for the 8 weeks of recovery time after the c-section.  It will be a little more interesting this time around since we now are blessed with a little man that happens to be completely immobile and total-care.  It will mean more planning and more resourcefulness required on my part.  I'm up for the challenge... :)

As August dawns, there are, of course, more things already in the works during my recovery time and for the months after as well... but for now I'm focusing on the construction and the summer!  And the whole "spring cleaning" idea that really is necessary right now :).

A "Special Needs" Valentine's Day...

I don't mean to be a downer on the day of celebration, but I'm afraid this is one of those posts.  It's been a great day, a day not so out of the ordinary except that the kids are wearing clothes that might lean more toward reds and pinks than 'normal' and there was a party at school.  Our younger two girls and our older son all enjoyed the parties, and the little girls came home and looked at the little cards, separated out the candies, and had a fun time at "Daddy Love Lunch" with their dad today!

But we have 5 more kids... Five kids whose needs are more significant than some and who have a totally different kind of day on Valentine's Day.  It happens with other celebration days as well, but those generally have more educational or spiritual value than Valentine's Day, so there's some net worth in the difficulties they have to overcome.

For my 5 little ones with special needs that go to school today was an ordinary start to the day.  As painstaking as it was for ME to have to write out 58 valentine's cards that said "To My friend From (Aleksa, Emma, Welsey, James, or Micah-- and I did Lynae and Brianna's as well),"  The idea of having the kids participate in this activity would need to have been started weeks ago since none of the 5 can write a letter independently, much less entire names or words.  So I filled out the cards to friends and I put them all in their backpacks, ready for the day.

The kids were dressed a little more in the lines of pinks and reds than any ordinary day, and of course we woke with "Happy Valentine's Day!"... but otherwise the day was much like any other before school.

Our kids have great teachers that truly DO start weeks in advance at times in preparing things like crafts for the kids to do, and I'm sure that the kids enjoyed school both today and in the days leading up.  I'm sure they found it fun to pass out the little cards that I'd prepped for their day (presuming that the teachers had the students hand them out...).  And they were truly excited when they saw that they had that same bag/box in their backpack when we got home today.

Then we sit down at the table and the day goes on... And this is where the scrooge of Valentine's Day in me comes out, I suppose.  It's a time when I look at the things dumped out in front of each child.  I quickly pull the candy out of Micah and James' bags since it is either hard or gummy, neither of which they can eat.  Then I look on to Emma, Micah, and Aleksa's piles and notice the squished mini cupcakes with icing mushed in to a ziplock baggie.  No name for who it's from, not idea what's in it.  Those are the next to go.  I believe most parents in their class would cook a great sweet treat for the kids.  Others would likely try to poison them :).  We just won't go there.  Then we remove the pencils that have already become sticks to hit one another with, and the erasers that are quickly about to be mistaken for candy.

What Micah and James are left with is a pile of little folded papers with pictures on them and names scribbled on by hurried parents.  Aleksa and Emma still have a mountain of candy along with their papers.  Wesley's whole bounty is sitting there because he doesn't really care one way or another and I haven't needed to confiscate from him yet because of that.  If they had their way, I'm sure the girls would have eaten every piece of food in front of them (and the erasers, and the packaging) if I'd let them, but we really don't let the kids have much sugar.  Especially those that have attention and/or behavior issues...

So, I open one package of candy and spread it out among the kids that can have some.  The rest goes to the refrigerator drawer to be eaten by hungry visitors and otherwise to wait to be purged again around Easter.  The kids take one glance at the pile of cards and decide they're done.  They left the table and I realized that not only are the little cards pretty useless, but all of the candy and food that they brought home from school will most likely go to waste.  The idea of the holiday is wrapped around children that can eat without restrictions, that can read and recognize common characters and pictures, and who understand the idea of giving the cards to friends.  My 5 children with Down syndrome have no ability to do any of those things.

It's almost like giving a 2 year old an adult bicycle without training wheels for Christmas.  OOOOHHHH!! SO FUN!  Then they realize all they can do is look at it, and the perspective changes to uuuuuuhhhhh..... not that!!!!!!!!!

My more involved special needs kids aren't disappointed.  They don't realize that other kids can eat the candies, or can play with tiny toys, or that the little papers are supposed to be neat things from friends at school.  They enjoyed the momentary time of getting and giving, then they came home and saw it... and are done.  Their teachers made it fun

Yes, those that have the ability to eat the candy will eat a small amount over the next few days as appropriate.  But otherwise, the idea of a "School Valentine's Day" is lost on them... and it's back to being just another day...

Now the kids are having a blast with the windows open in the playroom, swinging and playing with music on and dancing around... this is what a Special Needs Valentine's Day should be :).  Regardless of whether it centers around hearts and candies and a naked baby armed with a bow and arrow... :)

A new way to follow...

If you're interested in following along on our blog, but don't check in online all that often, you can put your email address in the "follow by email" box on the right side column and you'll receive posts by email.  It sends them out several hours later, but hey... you don't have to come by the blog :)

New Month, New Beginnings...

It's February 1st, a new month, and several new beginnings :).

On January 30th, my brother became a daddy for the first time!  David and Erin had beautiful Sophia Harmony Pocock just before 11 after a quick labor and delivery.  Michael and I are also an aunt and uncle for the first time!

This month is a month of birthdays in our house!  Wesley will be 7, Kristopher will be 8, and Emma will be 9!  Our new line-up will last from February until late July when the new baby is born...  The kids will be 9, 9, 8, 7, 6, 5, 5, and 2!

The weather here has been BEAUTIFUL.  It's been in the mid-70's for a few weeks.  Great time for playing outside, leaving the windows open, and cleaning house.

And on that note, though I'm still nauseous pretty much all day every day... I am starting to get more energy as I get in to the second trimester!  Time to make up for some of the stuff I've been really slacking on the last few months.  In between being sick, I'm not falling over tired the last couple days.  Things are looking up in that regard!

Several other things in the air that we've been working on as well, and I'm looking forward to a good month, a new and more productive month, and hopefully one filled with more energy... and maybe even waning off on the sickness :)

Sometimes

Sometimes I write nothing, because if I wrote anything, there would be way too much to say.

Last week:
Wednesday: Pre-op for Aleksa's ear tubes/hearing test -- All looks well for surgery Friday
Thursday: Lynae pediatrician for ongoing runny nose and cough (since 12/2011!)-- Ended up with Rx for Albuterol 3-4x/day, Claratin for Children, Nasonex, and Singulair for the next 4 months... Appears to be allergies or Asthma.
Friday: Aleksa's ear tube surgery and ABR.  Tubes went in, ears looked awful (??) and hearing test results still out.  Then, evening Financial planning seminar in Orlando with the DSACF which was great, but a late night and made for a very long day!
Saturday: Horse therapy, attempted unsuccessful naps for children, wonderful friend brought dinner!, and Wesley's sleep study (Michael went with him).
Sunday: too many circumstances to describe, but missed church, moved 6 kids' bedrooms around, washed all the kids' sheets, then our fridge died and spent the evening fixing it... or rather watching Michael do that.

When I say it like that, it sounds boring.  Somehow, it was NOT a boring week though!!!  But if I go in to details, I'm thinking I'd be up all night....

The saga continues...

When I'm asked what the most DIFFICULT part of parenting children with special needs is, I have a very simple response to that.

Dealing with getting appropriate healthcare and education!

Now, please don't mistake this for the DOCTORS, or the NURSES, or the TEACHERS or THERAPISTS!  By all means, we have been blessed abundantly by those professionals that have worked directly with our children!  No, instead I mean the insurance companies, people sending out paperwork (or rather, not sending it...) and the like.

Just today I received a large envelope in the mail for Wesley's sleep study happening this Saturday night.  You know, 3 days from now.  The first page says "IMPORTANT" in bold, capital letters and highlighted.  Then it says "please begin filling out this sleep log 7 nights prior to your sleep study.  This information is very important for us to accurately read the results of your study."

Now, let me think... what times did Wesley wake and what times was it another child over the last 4 nights?  I HAVE NO IDEA! :).

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In similar news, last week when I took Wesley in for his GI appointment on Wednesday we learned that Wes has H. Pylori.  This was in a way a relief, since it is a treatable condition and means that there is a potential that after he heals up from this, that he may have a better time of getting adequate nutrients and a better food intake in the near future.  YAY!

Unfortunately, our doctor, pharmacy, and insurance company just can't seem to get along :).  Ok, really, it's just the insurance company, but all the other parties have been very involved as well...

At first, we had a script for Prevacid Solutab (dissolving tablets) 15 mg tablets since the 2 antibiotics that Wesley is on will cause significant reflux if not simultaneously treated.   We were told that there is no longer a generic of this med, so it may be a problem with insurance.  Then we got a call that it was 'stuck' with insurance and would be delayed.

I called the pharmacy... they said it's because it's a prescription for Solutab tablets that insurance kicked it back.  Since Wesley is over 5, he's expected to get a caplet and swallow it.

I can picture it now... I put the caplet in his mouth with something else and he either chews it up or he gags, chokes, or just immediately vomits.  The goal would be for him not to chew it.  The others don't sound as pleasant, though!

Ok, so call the insurance company and the nurse at the doctor's office.  Also called our insurance liaison to ask her how to get this done.  Our insurance company told us to write to their Utah office and they'd let us know in about 6 weeks whether it would be approved.  Really?  6 WEEKS before he can be treated for an infection he has RIGHT NOW?

Our insurance liaison was given a fax number for more immediate concerns (though the nurse wasn't offered this option).  Still, they said we'd need to pay for the medication and "wait and see" if it was going to be covered in the future.

I really don't mind paying for what we're supposed to pay for.  Really I don't.  But if we're NOT supposed to pay for something, I certainly don't want to pay for it!  After all, this medication is about $100.  Not a cheap one by any means.  Eventually we found someone that has used the caplets and opened them up and mixed them in to applesauce or something similar, so we called our doctor and said PLEASE, just rewrite it for the caplets so we can get this show on the road and get the right meds for Wes!

Next thing I know, the doctor has said he'd like it to be compounded if insurance won't accept it as a Solutab... Now I'm waiting for it to be called in, a full week later, to a different pharmacy that will compound the medicine so that we can give it to him as a liquid!!

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I won't get in to the obstacles in the education system or difficulties therein right now.  Medical is enough for one day :)

It's birthday time :)

Today, it's my birthday :). I've sent the weekend with my mom and ladies from her church at a Women's Confence in Leesburg and had a nice time!

Today we head back home and I'm glad for that as well, though. I'm sure there's a little Kristopher that has been counting down the days for two weeks until Mommy is 30. Who would want to disappoint a 7 year old by not showing your face on your birthday?

I did, however, make it difficult on my Facebook friends... I posted this last night:
What? You can't write on my wall?? :). Maybe... I did it on purpose :). You see, every day that I sign on to Facebook I look to the column that has birthdays and if I have a minute, I send of a Happy Birthday shout out to friends. But then, when I go to check in and see how a friend is going three days after their birthday, and I haven't seen or heard from them in a week, I have to search through 50,000 birthday greetings back page after page to find out what they are up to and not just read the many (often wonderful and inspiring!) birthday posts. So, yes, I intentionally blocked my wall this weekend because yes, it's my birthday. And yes, I'm THIRTY! :). And no, I don't even mind :). But I'm not so fond of the 50 million individual birthday posts, so I took it in to my own hands. So mean of me :). Thank you to those who have already wished me a private happy birthday :) Sorry you felt left out that you couldn't post it on my wall :). I promise... It's not just you :)

As one of the conference leaders so aptly put it yesterday, "God's done quite a bit in your life already, can't wait to see what the next 30 nd more years hold!". I tend to agree. The last 6 years, especially, have been one blessing and trial after another, but what a wonderful road God has us on!

Here's what God has done in my life the last 30 years...

I was raised in a Christian home, and accepted Christ and made a life change to live for him just before my 15th birthday. Just less than a year later I began dating the kid that always bugged and picked on me through school. I thought it was so he'd leave me alone, but Gods plans were different. In August 2000, just weeks after our high school graduation, Michael proposed and we were married in July 2001. We had a plan for the next few years... Finish college, have a baby, buy a house, and start in our career fields, him working in the church and me taking care of our baby and working part time as life allowed. Then we wanted a second child, about 2 years apart. We knew we wanted more than that, but we stopped our life planning there.

Amazingly, we had heard God right on and our wedding, schooling, pregnancy that led to Kristopher's birth just 2 months after my own college graduation, and the birth of Brianna just 6 weeks shy of 2 years later were all right in line with our plans for life. We owned our house a car and mini van and Michael had also graduated just after Kristopher was born and worked at Park Avenue church.

Our planning must have stopped there for a reason, because God took it from there and made the magic that our family is today...

Brianna was diagnosed with Down syndrome at 8 weeks old. Then two days later we learned she had a major heart defect and needed open heart surgery. That same day a child that is like a courtesy nephew to us was dropped off on our door step for the next 5 weeks because his mother had nothing and no one, lived over and hour away, and was about to have another baby. He'd was 14 months old. We then struggled big time dealing with the diagnosis and fear for our newborn, a wild and undisciplined 14 month old that also liked to embed his jaws in to Kristopher's arms, and a happy little 25 month old Kristopherr whose world had now been rocked then rocked, then rocked in the last 2 months.

Brianna had open heart surgery then ended up with a g-tube all at 5 months old. She was in the hospital 3 hours away for 19 days and again our family was separated. Thank God for grandparents that kept Kristopher...

Through all the difficulties that her diagnosis brought, getting through the heart surgery was really the biggie. We loved Brianna for exactly who she was and is, and her diagnosis took some adjusting, but didn't scare us. When she was 18 months old we decided to adopt...

We traveled just after her second birthday and my sister filled in as mommy for a month while Michael and I went to Ukraine. We tried to adopt 5 year old Aleksa only to be told no because she was in a mental institution that couldn't understand our true intentions of wanting to parent her. Then we instead brought home Emma and Micah, two very different children than we had prepared our hearts and homes for.

At 6 weeks home Emma was diagnosed through heart catheterization as being terminal. She was given about 6 months and we were told to take her home and enjoy her. The roller coaster continued when the very next day after returning home Micah was admitted to the hospital with pneumonia. His 5 day stay continued to shake our family and our world.

Much ensued during the mean time, but Emma had surgery for her tonsils and adenoids to have them removed in June of 2008, the hope and prayer that it would in some way help her to be able to have the heart surgery she desperately needed. 8 days later she came home in bad shape, and her heart surgery was scheduled, though it was explained to us that the likelihood of a successful heart repair was very very low and still would have many complications.

August 4th we said goodbye to our baby girl, just 5 1/2 years old and barely over 20 pounds who we had only just begun getting to know. On August 8th we took her home, happy, healed, and with a wonderful life outlook!!!

Since that day Emma's lungs have done what is medically not possible... They've begun to heal themselves from the years of damage that was caused by her major heart defect...

Just a few months later we learned that another baby would be entering our lives and in September 2009, Lynae was born. Michael went to Kenya for a mission trip over New Year's that year and while he was gone I discovered a little boy with Down syndrome on the Florida adoption website. With Michael's permission to inquire, we began the process of another private home study, 11 weeks of MAPP parenting classes through the state, and James' placement in our home in May 2010. That July God called Michael specifically to the face of another little boy in Ukraine, and we prepared to bring Wesley, a quadriplegic with unknown past and future, in to our family.

I traveled on a mission trip to Ukraine with a friend and was contacted in that time by a missionary. She didn't know it at the time, but she was the angel we had hoped and prayed for, but we didn't know the extent we would be blessed by it. We never knew what had happened
to little Aleksa, the girl we couldn't adopt 3 years earlier. Alla knew her and not only gave us news about her, but advocated to the director for us to be able to adopt her now. Thinking it was impossible because we hadn't filled out all the paperwork for two children, we quickly learned that God had prepared the way for us, with all of our paperwork including an application to US immigration where we had asked for approval for one child... Approving for two.

On September 17th we first heard from Alla and knew that Aleksa was still alive and well. Exactly three months later, on December 17th, I took Aleksa out of the institution gates for the very last time!!! Wesley joined us as well and came to me just 2 days later. We spent our first Christmas using Skype to see our family and came home on December 29th.

It's been one year since God added #7 and 8 to our family, and now we are expecting baby #9, planned to arrive on July 31st. Michael still works at Park Avenue, I still have worked part time as needed, but am home with our children. Our mini van is still around, but that little car turned in to a 15 passenger van and those plans we didn't make have been radically taken over by a living God that has blessed us more abundantly than we could have known to ask for!

Michael and I just celebrated 10 years of marriage, and I couldn't have dreamed up a better husband, lover, and friend. Who knew in junior high that the kid kicking my crutches out from under me would be the same gentleman that led me through 39 hours of labor; who cuddled our smelly, angry, 5 year old in a foreign country and brought her home to tenderly hold her hand, kiss her face, and stand together with me as we faced what we thought would be her death; who said "yes" as God called us to a full and busy house of children born to us and children gifted to us from God; who would still smile and share his excitement when I told him that baby #9 was on the way... Just a few hours after I returned from being overseas for 9 days; who loves me unconditionally, fathers our children with God's tender grace, and makes each day a new adventure that I love to embrace alongside him...

So I don't mind saying that I am thirty years old today, and I am not afraid of the idea of getting older :). I consider it a great joy to be able to share the testimony of what God has done in Michael and my life in the last 30 years and as was said to me yesterday... I can't wait to see what God has planned for the next 30 and more years! I won't be making any plans! As good as mine may be, God's are always so much better, even when it brings us through trials unimaginable to get there...

Women's conference time!

And the men's restroom has been converted...

There's someone growing in there!

This afternoon we had the first OB appointment for this pregnancy, which, yes, is really pretty late in the game :). But, that's how they do things now, so, we go with it. I'm almost 12 weeks along and baby is doing great. And YES, for those of you on the twins bandwagon, you can jump off it now because there is most certainly ONE baby :)

We were able to hear the heartbeat and had a quick ultrasound to take a peek. They only did one measurement (head) and it was just for kicks, but the baby measured almost a week ahead. That is pretty normal, and such an inaccurate measurement at this point that it really doesn't mean anything (except that the baby is growing well, since it wasn't measuring several weeks behind). It will also keep us from putting too much stock in the date that they scheduled our c-section (having had a natural birth-gone-bad then an emergency c and Lynae was then a planned cesarian, this one didn't need much discussion!). As it is, looks like baby #9 will grace os with his or her presence on or around July 31st! Lynae was born on the date. They scheduled for her when I was 8 weeks pregnant, so it's pretty likely that, barring a reason to come earlier or an emergency for someone else that needs to bump us, we will be having a baby that day!

Isn't that weird??? I thought it my entire pregnancy with Lynae too... So strange to not have a guessed on date like a due date that means give or take 2 weeks, but an actual date scheduled at the hospital already just over 6 months in advance...

The outlook from here as far as appointments and such goes, is that I will go back at about 15 weeks. We will have an ultrasound for health, measurements, and gender about 18 weeks. At 19 weeks we go back to the doctor, then see the high risk team for a level 2 ultrasound between 20-22 weeks (this is because of Brianna's heart condition and that Lynae also had a minor issue). At about 23 weeks back to the doctor and again at 27, then every 2 weeks until delivery! That means at least 11 more appointments within the next 6 months plus lab work and anything that 'comes up' unscheduled. Now to make that calendar and my kids' calendar match :)

Edited to add...
The doctors office must have sent us home with reading material for the next 6 months... At least 6 magazines, a pregnancy calendar, two booklet thingies about pregnancy, a bag, etc... I don't remember all that with baby number one and two, but I do with baby 3. Fun stuff :)

Name that random object...

And no, I don't know the right answer! 

I'm thinking a piece of a rocket, missile, or aircraft.  None if which would be unusual to see in our town.

The story behind the picture is that the driver couldn't make the turn due to construction barriers on the inside of the shoulder underneath an overpass.  I was pulled up at the light needing to take a left, but it was obviously blocking all traffic in every direction, so I got out and stood where the driver could see me in his mirror to show him how many inches he had before htting the guard rails.  After 3 attempts he made the turn with an inch and a half or so to spare... That was my excitement for the day...

Anyone know what it is?

The Little Drummer Boy

I was tuned in to a new blog in the past few weeks.  It's not a blog that's "fun" to read, in fact, it's HARD.  THe blog is of a mom and her son, a little boy with severe EB, which is a skin condition where any friction or pressure on the skin leaves large sores.

Little Tripp is just a few months older than our 2 year old, Lynae.  A beautiful little boy with a smile that showed in his entire being.

And yet his body was always covered in bandages, his hands missing fingernails, his skin just peeling away.

This past week, Tripp went Home to Heaven!  A day to celebrate, for sure, because he is no longer suffering in pain, the blindness that was caused from his condition over time, and the swelling that had overtaken his little insides...

This little guy is one of those babies where you say "thank God he is free from the suffering," and yet we wonder why God allowed it all in the first place.

Truly, a life like his, with SEVERE EB (there are lesser extents of EB as well where people live long and fulfilling lives with much fewer complications, though always a painful disease), is what I picture when people talk about kids with Down syndrome "suffering through life."  Our kids don't suffer, but this little guy SURE did.

But then, I think... Did that make his life less worthwhile?

Not for a minute.

If you have a chance to look, go to his blog (posted below) and check out the 'video' tab.  Click on each of the top two videos.  He's a happy, playful, demanding, sweet 2 year old little boy!!  And he has some great rhythm!! :).  Those videos, if you couldn't see the scabs and sores, are the picture of absolute happiness! And for him, DESPITE the scabs and sores... he is delighted!

No, he didn't live a long life, and yes, there's no question that he suffered.  But really, is there any reason that even a life of suffering is not a "worthwhile life??"

Our continued prayers go out to the entire family as they grieve the loss of little Tripp, even as they rejoice at his Homecoming.  He was his momma's ENTIRE life.. her every moment was devoted to him, quite literally, and I imagine those empty spaces are going to be very difficult for her.  Especially in these early days without him to fill her hours...

http://randycourtneytripproth.blogspot.com

Poor kid...

Micah has major sensory issues in several areas and one of those is with food.  He won't eat anything that is dry.  Dry cereal, dry bread, dry crackers, etc.  He also doesn't chew well, though he does now know HOW to chew. 

Today I decided that if I was making chocolate chip waffles, he was eating them!!

And this is his poor distraught face after devouring the entire bowl of cut up chocolate chip waffles...  He enjoyed it!

Some Cornish randomness

• Lynae used to try to keep herself awake by crying... now she plays.  No toys, no nothing, but she still plays.  She is singing the ABC song (amazingly well except for LMNOP), counting her fingers,  and making any and all attempts to engage her sisters.  She's very successful.
• Lynae has a new favorite toy.  It's a Cabbage Patch Kid 'toddler' she got for Christmas.  It came with a pacifier.  This time last year she would bug me for her pacifier all day long.  Now, she bugs me for her doll's pacifier.  
• Micah had no accidents throughout all of Christmas break- literally NONE at home- except for one where he stopped himself while we were at the doctor for an ear infection (and the doctor was checking his ear).  He's been back in school for 3 days and had a BM accident (which he hasn't had in MONTHS at home) yesterday and today he wet.  Hmm...
• James decided today was the day to begin attempting to use the toilet.  He went twice at school today! Now if he can start holding it between going... since he's been going in the toilet AND diaper at home for months...  He just doesn't ever hold it between and doesn't generally go on the toilet at school.
• Emma and Aleksa are doing well at school, but the old behaviors (before Christmas) are starting to slowly crop up already.  Here's hoping they can be stopped before they get in full swing again... 
• Wesley is still not eating well.  He ate a total of 16 oz all day yesterday.  Not. Good.  Today we got in 24 oz.  Tube, here we come...
• Kristopher is glad to be back in school and is enjoying it!  He had karate yesterday and youth group today, which he hadn't been to in a month.  Kris also made two new friends over break.  They happen to live in the same house as one of my childhood friends did, just down the road.  Kristopher has been riding his bike between their house and a friend across the street and enjoying his new found independence!
• Brianna started back part time with home schooling a few days ago.  She's asking to do the new computer based phonics program, though she needs a bit of help with it still.  I think she's glad to be back to familiar routine a bit and having some more time 'alone' during the day when some of the other kids are at school.  She and Lynae started back at KAD (mom's morning out) yesterday and both were SO excited to go! :)
• As for me, morning sickness isn't in the morning.  It is 24 hours a day, 7 days a week, so far for about 5 1/2 weeks.  Maybe.  ending.  soon.  I'm about 10 weeks now, and hoping to see a cessation in the next few weeks!

I decided to dream big

In regards to my children's schooling next year... I've decided I want to dream big. What does ideal for each of them look like? What does ideal for our family as a whole look like? What is the combination of those two ideas put together? And what parts of that can translate in to reality?

What is the desired result?
What time constraints do we have?
What parts of life with 8 (or nine...) kids makes some things more or less realistic for us?
What therapies do we want each child to receive, and how does that work in the great plan of it all?
What financial resources are required to do each different part of it?
What physical resources are needed?
What type of man-power would be necessary to accomplish the goal?


And from there... We will see what kinds of changes may be coming for next year, if any.

We will have all of our kids out of pre-k and Lynae won't be starting for another year. We will also have a newborn... The school age kids will be kindy, kindy, first, first, third, third, and third. Kristopher and Brianna are the two on, over, or near grade level, and they will be first and third grade. It's a lot to think about, but it's well worth the time and consideration to know that we are being intentional about our children's education and plans for their futures!


**note to my kids' teachers... This doesn't mean we aren't happy with where they are, and we are not moving anyone this year :) We are simply looking forward and know they won't all be in the same situation next year and we want to be intentional about where they ARE :). We are VERY pleased with all of the teachers and aides this year!! I kind of wish we could just know that they would all be in the same situation next year, but inevitably they do get older and change is inevitable... :)

Yep, we are expecting :)

Despite my discreet announcement, I keep getting questioning emails and messages that sound like someone's afraid they heard wrong... :). So... Here goes....

We are expecting a new Cornish to arrive in the end of July or beginning of August!

God began to reveal His plans while I was in Bulgaria just after Thanksgiving with some more confirmation while flying home (morning sickness kicked in big time in the Munich...) and confirmed after arrival back in the USA. We are excited about the addition of a new baby to our family!

I have had some significant morning sickness... More so that I've experienced with previous pregnancies even. It has made things a bit more difficult around here, but with each new season of life we adjust to what God has for us and make it work!

Your prayers are appreciated for health for our family including God's new little creation... And if you have any morning sickness remedies, feel free to share :)

And five days later...

It has been such a great break from school! This longer than usual break for Christmas makes me dream of summer time and of not having to be on a school schedule! We started back part time homeschooling Brianna since she missed some days while I traveled after Thanksgiving. Now she and I are working on school during the other kids' break to make up for the missed days.

We have also been spending some time outside in this beautiful weather! It has been chilly but not cold until Tuesday. Then it got to be cold :). Even a Florida cold is still over 50 and a jacket can take care of that! Emma, Brianna, and Lynae have been learning new tricks like pedaling a tricycle or riding a scooter. James has been trying out more and more activities without too much prompting and is the most excited about the pre-bike that they got for Christmas. It's a bike. Made for toddlers to teach balance, but it doesn't have pedals to get in the way. Google it or check it out on YouTube to see some interesting videos of the things some little kids can do on them! So far no great success, but James really wants to try!

We just got two new helmets so ALL of the kids will now have their own. In the last year we've been sharing them and resizing and driving ourselves nuts :). Now they can all have one and we can. Just play!

Brianna turned six on Tuesday and on Monday evening we had a few family members over to celebrate her! She enjoyed it and has carried around a card shaped like the number six for the last two days. She even slept with it last night! We ask her how old she is and she says "five". Then we say, "no, you had your birthday, now you're six!" and she says "I'm six!". Then we say again... "so, how old are you?" and her answer is always the same. "Five."

Yesterday we had a BUSY day! We got up earlier than our winter break days have been and got going right away. Michael and I and six of the kids headed down 45 minutes drive to a doctor visit at the ENT for all six of them. Here's what happened with each:

Aleksa: failed OAE (hearing test). Failed tympanogram (tests the ear drum function). One side indicated fluid or possible fluid. The other was 'unusual' and not fluid but still failed. She will be having a sedated ex am and possibly getting tubes during that procedure.

Emma: failed the OAE in one ear, passed the tymp. She goes back in 4-6 months just to recheck.

Wesley: he isn't there for hearing, he's there for possibked sleep apnea issues discovered after his surgery in April. We are going to do a sleep study just to be sure whethr something's going on or not. That's being scheduled...

Brianna: passed hearing, ears are clear though she still has a small hole in one ear drum from previous tubes that didn't heal up after the tube came out. That's been there for almost a year. The doctor mentioned a poor eustation tube function to Michael after I had to leave. Not sure what he meant by that if her OAE and tymp were both fine... But she gos back in 4 months...

James: no issues! He hasn't had much sickness at all since August except strep when the whole family had it! No ear infections, no issues... He goes back in 6 months just to recheck but... Yay!

Micah: though he just got over an ear infection, his tubes still look good and aren't clogged up even from the drainage. He shouldn't get so many ear infections, but he already has tubes so what else can you do? He go back in 6 months.

All together not so bad. One sedated exam and one sleep study in the works of being scheduled.

I had to run out before the appointments were finished because despite our 9 am ENT appointments, I also had an appointment that was equally as difficult to schedule for Wesley to have his EDG scope done at the hospital an hour from there. We were supposed to be there for registration at 11 am... So I should leave the ENT at 10. I stayed until 1030 because Mike was just finishing up with the last child that needed a hearing test at that point and only needed to talk to the doctor a second time about two of the kids. I managed to do all six kids' first round (while Mike kept the rest of the kids then began cycling through with the audiologist with those that needed hearing tests). And I did the second visit with Aleksa after her hearing test.

Then, I drove to the hospital and was glad not to hit traffic! I got there at 1130 and they weren't busy so it worked out just fine! His procedure wasn't scheduled until 1 and we went right through registration, met with the anesthesiologist and the doctor and got him all ready to go back. They gave him a pre med since he was fussing every time anyone came in to the room to talk... He doesn't love doctors... He was almost asleep except for his occasional giggles when they did come to take him back to the OR.

An EGD is an Endo-gastro-duodenal scope. Basically goes through the throat, stomach, and into the bottom of the stomach area to look at everything. This was done because he still is having a hard time getting in enough calories in a day to gain weight. In the last year he has gained only 3 pounds, which puts him weighing 3 pounds more than our tiny 2 year old. Wesley will be 6 next month. We switched to an all liquid diet with him in the summ because he was losing or barely maintaining weight on a regular food diet. This is why he is so small to start with, because in Ukraine he was given whatever he ate in whatever time they decided to feed him in, and then when they were done, he was done too even if he didn't eat it all. We of course would sit there for him to eat it all, but sometimes that would take 2 hours! When we went to a Pediasure diet he began gaining veery slowly. We have also done an all blended diet, but he goes back and forth between refusing the blended and refusing the Pediasure.

On top of all of that, Wesley loves to EAT. He gets mad when he's given a drink and we are all eating. If he finishes the drink, we will offer him some food, but often he won't drink and it becomes a meal of battles. We tend to have cycles of this, but it is wearing for him and us to do. We don't want to fight with him to drink three meals a day every day! And, we wan thim to be ab le to enjoy meal time, not to suffer through it...

The scope was all normal, which is good and bad :). If there was something like evident h pylori or something like that, then maybe there would be a way for him to gain on a different diet after treatment. Of course you never hope for parasites, but at least they do have a cure... As it is, it looks like we are probably looking at getting a g-tube in the next few months. That way we can tube feed him the required liquid calories when it's not meal time, and let him eat some real food with us when we are all sitting down to eat. Yes, we have tried giving the Pediasure between meals like this... He fights us on it and then ends up spending HOURS at the table, both getting his Pediasure and when we are all eating. He also ends up not drinking the pedasure most of the the time and we have to I've it back to hum at meal time instead of food again anyway since he has to have the calories...

So... Yesterday was a long day, leaving the house at 8 and getting back home at almost 5pm after seven doctor visits and 3 hours of driving between them.

Today is a lazy day at home! No school until Monday and a beautiful Florida winter day with a high of 65... Time for bike riding and scooters and sidewalk chalk with a picnic lunch outside :). Then cozy naps and an afternoon with four kids' speech/feeding therapy sessions...

If you don't have time to read the entire year in review...

You might want to skip right on down to December in the previous post :)