Sunday, January 30

The whirlwind weekend

After Friday's ear tubes for James we had a pretty low key day.  Mike brought the kids home from school for me and we had BBQ take-out for dinner.  That was the end of the low-key :)

Saturday was my sister's Bridal Shower!  I'm so excited for her and her fiancee!  They came in on Thursday night and are here until Monday, though we only saw them on Saturday.  Mike was on Daddy Duty all day Saturday and kept 7 of the kids for me to go set up for and do Elizabeth's shower, then I came home just briefly to help out then get ready to go back out that evening.  We had a "bachelorette" party for Elizabeth consisting of appetizers at her friend's house then taking an "O Cartz" (that was interesting!) over to Urban Flats for dinner.  I headed home with two of the other "mommy" friends of hers and got home about midnight.  Elizabeth and Jim (her beau) and their friend that had flown down for the shower were headed to Sea World today so they stayed at a friend's house in Orlando.

Today's been a lazy Sunday :)  We went to church this morning and then EVERYONE laid down for naps.  I'm not sure that Michael ever fell asleep but I did!  Emma, Kristopher, and Brianna laid down and watched a movie.  This evening Mike made chicken for supper and we did baths and our night time routine then got the kids down around 7.

Tomorrow Michael and I are headed to Jacksonville to the Down syndrome clinic with Aleksa AND James!  They were able to get him in at the last minute due to a cancellation so that is helpful!  Mike will go with me (we have to have an adult with each child being evaluated) and Wesley will come along too.  My mom and dad are getting the other kids out to school int he morning, hanging on to Lynae for the day, and then picking the kids up from school.  We'll be home just a little while after school gets out, hopefully!

Friday, January 28

Reinventing Romance and Protecting your Marriage

This has really been on my mind lately as I’ve talked to several other adoptive parents.  ALL parents, really—but most of my group of friends that I talk with regularly have recently adopted. 

A question for you—no matter your age, how long you’ve been married, whether or not you have any children.  What creative ways have you found to ‘reinvent’ romance within your marriage in order to be sure that you’re protecting your marriage?

What’s that supposed to mean?  Well, we all know that if two people don’t ever talk, they really don’t stay friends.  If two people only know each other because they work together and the company closes, they have to find different ways to stay friends… or go their separate ways.  When a husband and wife focus only on the daily tasks and raising their children, then there will be a day when you realize that you’re strangers and your ‘company’ has closed when your children no longer need you to focus on raising them.

Not only that, but a busy life will lead to burnout.  We have 8 kids… we’re trying to avoid burnout! :)  Finding time for each parent to have some down-time to not only spend with their spouse, but also just to seek their own interests as well gives us some time to rejuvenate and be ready again to face the day after a break.

Both of those things—spending time alone with your spouse and spending time on some of your own interests—are pretty difficult to do sometimes!  Time, money, childcare, there are so many reasons that people can come up with that they don’t intentionally do these two things.  And I strongly believe that that is setting them up for failure in their marriage.

What do you intentionally do to spend time with your spouse?  What ways are you seeking some personal interests (not just “work”)?  What ways do you find that these help you and your spouse?  And what things come up to keep you from being able to do these?

I’ll share what we do in a future post, but wanted to put this one out there :)

He Done Good

:)  James did great today, no issues, and we were home about 11:30.  They intubated and he did fine.  Had about 1/2 bottle when he got home and then refused to nap.  Good little fighter-man that he is :)

I left the rail down on his bed for nap and when I went in to get the boys out, he and Wesley were both leaning over the edge of their beds staring at each other smiling :)  Wesley was all the way up on his arms!  Those two are gonna be buddies once they finish the faceoff I believe :) :)

James is in surgery

Just ear tubes this morning, and he should be done soon.  He's such a little ham and was excited that the nurse that was playing with him was going to take him to his 'nap'.  Unfortunately, because of his reflux, they still had to do an IV and breathing tube for him.  That means it'll take a little longer and be a little rougher waking up.  He's a trooper, though, so hopefully all will still be quick and easy!

Thursday, January 27

Crazy and my vent...

Yesterday was just an allover crazy day.  It ended up being one that I didn't exactly expect to be stressful and turned into one that I was in tears several times.  I seriously think that dealing with my kids' medical issues is SO MUCH easier than dealing with their school issues.  We have 32 daily medications (a few are seasonal) at the moment including three kids on breathing treatments.  We have had ten thousand doctor's appointments in the last month.  And yet an hour at school can put me over the edge.

Let me rephrase that... Micah's IEP went great.  He's really improving behaviorally!  I'm very proud of our little man and I am excited for what this next year has for him!  Unfortunately, that improvement in both behavior and health means they want to remove the aide that we had to work very hard to get for him.

"He's not gotten sick since his tonsils were removed."  Was what was said to me, which was the main reason for the aide.  "He got an aide and had his tonsils removed at the same time.  There's no way to know if it's the aide keeping him from having the opportunity to get sick by keeping him from licking or the tonsils coming out keeping him from catching everything."  That was my response.

Either way, his IEP now reads "small group" instead of "very small group" in most areas and the aide is being 'reassigned' to another more needy student in the class.  One that they are having a lot of difficulty getting to listen, and he's being pushy with the other students and pulling a girl's hair.  He's not listening, dropping down in the hallways when they walk, and won't follow simple directions.  Why did they tell me all of that?  Because it's my other son in the class...  James.

This wasn't his IEP, so I didn't go into the need to address the behaviors (YET) but you bet we will be because James does not and will not get away with that at home (therefore generally doesn't try but he IS a very trying kid at times LOL) and we need to figure out how to wean out or replace those behaviors in the classroom as well.

That part really wasn't even that bad.  Really, I knew James was acting up at school and the teacher and I have, on a quick level at the car, discussed this and continue to work on it.  And here is where this post gets long... Just to warn you :).

The part that really got me going was right after that.  The ten minutes at the end of the meeting while I was picking up the toys my kids had played with and distributing muffins to the teachers (I always come with food :) ) and getting ready to leave.  The part where the guidance counselor said "I got your emails (from 3 weeks ago) and talked with who I needed to talk to and you just need to call your home-school to get the kids started in testing."  Ok, that's fine... this was about Aleksa and Wesley and how I need to go about getting them enrolled for next year.

Then, through our conversation I learned that the school my kids are currently at is the only school in our area  that has a pre-k, an assisted level classroom (which is what Emma is in) and regular-ed all on the same campus.  There are only 2 other assisted level classrooms in the area and neither has a PreK appropriate for my boys.  One used to send their PreK kids to another campus which is where my children go for therapy... I'd definitely consider that... except that they have no nurse on campus there so since the boys both have care plans with nursing... that wouldn't work either.

Why not just keep them all at their current school then?  FUNDING.  That's what it comes down to.  The class that Emma's in is the one that *I* see as most appropriate for both Aleksa's and Wesley's needs (there aren't a whole lot of options...).  That classroom was 'full' this year to students outside their district with the exception of students already placed there on scholarship.  Emma is there on scholarship.  No new scholarships were given for there.  Add to that the fact that Aleksa and Wesley aren't eligible for the scholarship that Emma is there on because they haven't attended a year of school in our county already.  So they would be straight "out of area" students which is HIGHLY unlikely to be approved simply because of the class size much less funding for special needs.

One more flame in the fire... this is NOT our home school, because our home school has ZERO services for our kids.  So they would naturally send us to another school that from what I know abut it, I don't want my children attending.  I also have a child that is in 2nd grade and has already been to 2 different schools and is currently attending out of district that I do NOT want to have to change schools every year!

And so, we have a nice big predicament.  I wish that was all.

They then said "some of your children may test in the 'profound' category and the only school with a classroom for them is [on the other side of town]."  By "some" they can only possibly mean Wesley because all of the other kids are very capable, and I do believe that Wesley is as well-- we just can't tap into it very well yet.  Wesley will not be in a profound class.  There will be NO TESTING available that will be able to adequately evaluate him.  He's heard English for a month right now and has no expressive language in Russian.  He is going to quickly lose his understanding at the same time as he gains English, but generally there is a time of frustration where a child is thinking in one language and hearing in another and life is just very confusing!  Until at least a year down the road there is no way to find out what he is capable of.  He won't be wasting his time in a profound classroom when he could very well be on target for his age with only an orphanage delay.  Better he go to the 'higher' level classroom and begin working on basics and maybe find that he's just not getting it (if he really IS profoundly incapable which I just don't think he is) than be babysat.  Enough on that though...

My my my... I wish it all wasn't this confusing.

Ideally, next year all the kids will be able to attend the school that 5 of them are at this year.  Realistically, the guidance counselor said it is very possible that they will be at three different schools.  Seven kids, in one house, 5 with very similar special needs (one typical and one with CP instead of Ds), need to go to three different schools??  And how, pray tell, am I supposed to be AT all of these schools, spread out across the county, to drop off and pick up my kids every day?  (No, they are not all eligible for busing even at their current school and will not be at some of the other schools either)

So-- what is the answer?  I have no idea.  And that's what is so very very frustrating.

It's not like my children are that intense that they each need a super-specialized program!  Two need PreK, three need an assisted level classroom, one needs inclusion with support, and one is in a regular classroom.  You really wouldn't think it would be this hard to accommodate that in one place.  I realize that our family is outside the norm.  Most families don't have the family make-up that we have, and the schools generally only have to accommodate one special needs child per family.  I get that.  But it doesn't make it any better that they are suggesting (at this point... but of course there is much more to come) that my kids will be at 3 different elementary schools.

And I'm frustrated.  Because there is no 'easy' answer.  If it wasn't a funding issue, then I know they could all go to the school that they're in this year.  If the class is full, and there are more kids that need to be in it, then ideally another classroom would be opened on the north end of town where several of the kids are being bussed from already.  And if, through whatever means the school system intends to test Wesley, they determine that he's not 'eligible' based on testing to be in the assisted level classroom, then I would need to fight that as a separate battle.

For now, though, there is nothing I can do but go call the local elementary school that none of my kids have ever attended and let them know that I need to begin testing for two of my children to be registered for the fall in school.  And I guess I need to figure out what needs to happen so that at least Aleksa is 'formally' being homeschooled this year.  Wouldn't want a truancy call ;).

I know other families bus their kids all over.  I know many have kids in three or even more schools (but not usually three ELEMENTARY schools-- I know that as they grow they'll go to different schools but they also won't be starting and ending at the same time and having all their awards programs and conferences on the same days....).   And I know I'm not the first person to complain about school with special needs kids.  I'm also certainly not the last.

There's my big vent about what has me stressed at the moment.

I didn't mind the throw up on my shoe, the snot on my shoulders, or the 32 meds that had to be administered yesterday.  I didn't even really mind the 48 doctor's appointments this month.  The only thing that comes close to the stress levels that school gives me is when we had unknown and potentially dangerous health issues with the girls earlier this month.  (I called the ped this morning and should have the rest of Brianna's bloodwork results today finally!)  And did I mention that my degree is in Elementary Education?  Yep, I know the 'way it works,' I know educational law.  And it still stresses me out even though I know what can and cannot be done.  Maybe that's why it stresses me out even more?  Because I know the loopholes that are used to put kids in where the 'system' determines they should be.

I know I'll get the comment-- why not just homeschool?  And if you've been a blog reader for a month or more, you'll know what the answer is to that...  How much homeschooling would we have gotten done in the midst of 48 doctor's appointments this month?  Not to mention what it would look like to be bringing 8 kids under 9 to each and every one of those appointments.  No, homeschooling all of them is certainly not on the radar yet, though some degree of homeschooling may be the only solution at this point.  YES, we are homeschooling Wesley and Aleksa this year though :)

Time.  It needs time.  Nothing can be determined until we walk out the things we have to do beforehand.  But I can guarantee this won't be the last frustrated school post.

And lastly, we love the school our kids are at.  We like the teachers, the administration, the classroom set-ups.  They have worked with us and been great about each difficulty.  It hasn't been "easy" because it's school.  But it has been pleasant.  And I hope and pray it will continue to do so.  This situation isn't that anyone is at fault.  It is really that we are getting a bunch of "probably's" from someone that has no ability to say anything "definitely."  If we need to, we'll go to whomever 'higher up' we need to to see whether there is an answer to this that just works well.  But for now, we'll do one step at a time... and I will try really hard not to stress out about something that's not happening for 7 months anyway

On a good note, I enjoyed Bible study yesterday and am looking forward to the rest of this 6 week study on Jonah- navigating life's interruptions... I've had a few of those...

Tuesday, January 25

It’s Picture Time Again :)

Kristopher’s award ceremony where he got a perfect attendance award!  He’s wearing his Busy Bee buttons on a sash.  He gets those for turning in his reading sheet each week. 

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I just enjoy looking at this… how could you not? :)

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Such a happy little guy… for the moment :)  He has been spitting up more the last few days because he’s got a runny nose (mucus makes him reflux) so he stayed home with me today.  This pic is from a few days ago.

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Sweet baby girl.  I should have learned by now that every time she wears that shirt she throws up on it.  Lynae started iron this week and can’t seem to keep it down…

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One of the sweet smiles I was able to capture on film :)  We are getting them more and more often now!  And… her hair is growing some!

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NO, he’s not licking his hand :)  He’s blowing me a kiss!  Sweet Micah!

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Wesley and Brianna are exactly the same size, but Brianna weighs 7 pounds more.  They are the same height, same clothes sizes, same shoe size.  And Wesley is 11 months older  (until his birthday they are both 5!).  They sure do enjoy each other tho!

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This picture reminds me of those ‘big head, little body’ pictures they do of cats and dogs… but Emma’s much cuter :)  She enjoys playing with plastic plates.  Round and flat is mesmerizing and she will flip and flap it for hours if left to her own (and no, we don’t let her…)

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This is what one bedroom has looked like for a little while.  Yep, 6 beds!  James and Micah moved out of their cribs and into toddler beds!  Except, James lasted in a toddler bed about 3 days before I decided that it was time to adjust a little more than ‘just’ that… Aleksa was on the bottom bunk and James and Micah were in the toddler beds when this pic was taken.

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This is the other bedroom before our changes…  Kristopher slept up top, Wesley on the bottom, and Brianna on the other mattress.

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I’ll share more about bedrooms when they’re done, but now the 4 boys are in one room, Kristopher on top, James on bottom (enclosed!), and Wesley and Micah are in toddler beds.  The dark crib moved to the girls’ room because it’s the crib we will keep for Lynae for now and get rid of the other two cribs.  That crib will change into a toddler bed in a few months as well but since I had two matching beds we put the two boys in them.  The crib was added to the other room, and now the 4 girls have beds in the other room!  I haven’t moved Emma and Lynae over to that room yet though.

For Wesley’s birthday we got him a ‘tiny recliner’.  Why?  Seems like a strange gift for a little boy?  Well, we’re sewing in a small restraint so he can sit in it and watch a movie with all the other ‘big kids’ without having to be in his wheelchair!  Since he can’t sit up independently, this helps him by being reclined a bit, supporting his legs, and still being on kid level! :)

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I’m thinking my post about this piece of furniture never made it to my blog.  I know I’ve talked about it, but not sure if I’ve shown it or not.  This is my dream.  Come true.  I asked my dad if he could build me a changing table.  I wasn’t thinking anything quite this intricate, or this nice, but he went all out!  I basically drew it all out and handed it to him and he not only made it a reality, but he made it a beautiful one!

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Here’s the table with Wesley laying on it.  There’s still a LOT of space for him to grow!!

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Since I have LOTS of kids in diapers (have you been counting?  Seven.  Yep, SEVEN kids in diapers!), I measured the largest diapers I had and then used those sizes to make the drawers the right size to hold everything I needed.  That determined the depth of the table and the size of each drawer.  In the picture below I tried to show all the storage that it provides.  The top left drawer has hair supplies, glasses and their spray to wash them, and gauze, etc for James’ g-tube.   The middle drawer is JUST for clean PJs!  We do new ones on bath nights every-other night and the PJs were always without a home.  Top right drawer is lotions, gloves, diaper creams…  Then  there are 6 identical drawers on the left and middle that are all for DIAPERS :).  The bottom is a HUGE drawer just for SHOES.  So they always go on and get taken off where the clothes are!  The Right hand side in the 2nd slot there is a drawer for extra trash bags and extra wipes, then the bottom is NOT a trash can (though the trash bin can be misleading when empty…) and it is, in fact, a HAMPER.

I LOVE this and it makes life SO MUCH EASIER!  We got rid of the hamper, shoe bin, stack of boxes next to the changing table, and all the ‘stuff’ that always accumulated on top of the table.  Instead, we have a beautiful piece of furniture that holds everything we need!

I have been told my dad needs to change careers and start just building special needs/adaptive furniture, and I must say that he does an AWESOME job at it!  Maybe he just needs to sell the plans to a company that would make them since he doesn’t have the time (or desire) to make them over and over again :).

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Well, what WAS a picture of James turned into a blur of James with a nice background :)  So I will share anyway!

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This is what they are watching… tho the lighting is awful, the porch was a nice chaotic mess and the kids were having a BLAST! :)

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Lynae climbed up on Aleksa’s lap because she wanted to lay on the pillow next to her…

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And Aleksa thought it was pretty neat :)

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After all, she IS the big sister! :)  And I loved this picture because Mr. Happy is also in it, sharing one of his huge grins with his sisters :).

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This is Brianna tonight.  She and her dolly were getting their nightly breathing treatments.  The penguin next to them?  That’s the nebulizer.  Tonight was our first time using the mask instead of the puffer and it worked pretty well.  Especially after Brianna saw her baby had a mask like her.  She didn’t even dump it on the couch.  Progress is good :)

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Miss thing sitting and waiting for bed.  I’m still so amazed at the progress she’s made lately.  What a beautiful treasure she is!

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Micah had looked at me with the BIGGEST EYES because he knew I was going to take a picture and he didn’t want to blink! LOL.  So, instead we have the half-drugged look :)

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James’ tube is doing funky things (again!) so we were playing on the floor after cleaning it up and he was all giggles.  He’s a sweetheart when you don’t make him mad! :) :)

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And Wesley, very unhappy with the idea of being set down.   I missed the full-on pout, but this one’s close.  As soon as I came over to take his sad picture he decides he’s not sad anymore.  All he wants is for me to sit and talk to him all day.  He’s pretty easy to please, yet VERY demanding about it! LOL

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That’s all for now, maybe some ‘finished’ bedroom pictures in a few days if I can get it all done.   Today was my second day in January with NO appointments!   All together, we’ve had 48 appointments in the 21 week-days of January (but 2 had no appointments, so 48 in 19 days).  Talk about BUSY!? :)

Tomorrow I’m going to a Bible Study just for ME :) :).  After Micah’s IEP and before school pick-up and parent teacher conferences at night… and youth group. Fun stuff!

Forced Play, and how DO you say "bring the empty milk bottle to me" in Russian??

Right now Wesley is being forced, against his will, to play with his siblings :).  He's a momma's boy which is great, but he needs to spend some time on the floor and playing too!  Not just in his wheelchair, but down WITH all the kids and playing with them!  So... he's on the toddler mattress on the porch and he's watching the goings on from 'almost' right where they are.

And he's not so much loving it, but he's tolerating it!  James wants to lay on the mattress with him and Brianna wants to rub his head and pet his face.  Emma was patting his back earlier when he'd rolled off the mattress (onto the padded floor-- no worries he's safe!).  Right now he's not loving it, but on and off he's stopped and started fussing and I do believe he's enjoyed himself at least a little bit :).

That's now... but earlier I needed that Russian dictionary! I kept James home today since he was spitting up a little more than usual yesterday and I wanted to make sure he isn't coming down with something before his ear tube surgery on Friday.  So, I was bringing James, Wesley, Aleksa and Lynae out to the car so we could go pick up the other kids from school and... as we walked out the door and found that the recycling was spread out across the front yard due to wind!

I brought Aleksa to the closest milk gallon and she picked it up.  I asked her to come with me and started walking toward the van to put Wesley down.  I thought she was following me.  She wasn't!  No, instead she was headed toward the neighbor's yard.  I said, wait, come here!  And,she put the milk bottle down.  I put Wesley in the car and asked her to come to me... and she picked up the Milk bottle... and headed to the neighbor's yard again!

It was quite comical having me keep trying to convince her to bring the milk jug TO me, as she looked at me, completely and totally confused, and trying to do what I was asking... except NOT, in any way shape of form...

In the end, she put the milk jug down on our property line and went and got in the car.  *Sigh*.  I should have just picked it up myself when we walked over to it! LOL

I really was TRYING to let her help me, since I know she enjoys being a helper and it's hard without language for her to help me very much.  This is just one example of my failed attempt to do it! :)


On another note, I heard back from cardiology today about Aleksa's and Lynae's hearts, and both have atrial issues, both need to be seen in the office at 6 months, but both are very minor.  It's likely that both are even the same thing...  but neither should still have it at their ages.  Aleksa's, the doctor was going to completely overlook until she found out she's 8 years old already.  So-- no worries, but a cardio visit in 6 months for both girls.

Sunday, January 23

Sometimes

I look around at the CHAOS that is my house at a given minute (this one!) and I think... well, there are 5 kids that aren't orphans anymore.  Surely I can get through this for that!

I'm not the perfect mommy, not the most organized, most compassionate, most patient, or most creative.  But I'm their mommy, and that's all they need right now.  As for me?  Sometimes I need to just suck it up! :)

Michael just left for the community worship service and took Kristopher along with him.  I have the other 7 kids here finishing up dinner and my laptop just happened to be on from when I was writing some earlier.  So when James started crying because he's in his high chair (he waits there a few after meals to make sure it's staying down when he has a runny nose and tends to reflux the entire bottle back up), and Wesley spit out a huge mouth full of lemonade-- complete with meds, and then Lynae heard them both crying and decided to join in on it too because she's really not feeling great after having started the iron last week, and then Micah, in his wonderful stage of mimicing, decided he'd join in the fun as well... Aleksa was just standing in the doorway to the kitchen looking at me with a very sad expression on her face since her food (and second servings) were gone several minutes ago and she was excused from the table with Emma, Micah, and Kristopher at that time while the 'slow pokes' finished up theirs...  Brianna is here too but she just took it all in stride that time as she finished the last of her dinner up.  And Emma... she may not have even noticed the crying  :)

So in the midst of the chaos, this is what I did.  I stopped giving Wesley the drink since he's spitting it out and I really don't want to be angry trying to get it down him.  I asked James to stop.  When he did, Lynae and Wesley and Micah stopped too.  Aleksa walked away deciding that she was going to find a babydoll and shove a cookie up its shirt then feed it a salt shaker.  I wish I understood her imagination... :).  And now the house is CALM, and QUIET.

So now, just 3 minutes later, there are 7 sweethearts in my house... and yes, 5 used to be orphans.  But I'm their mommy now, and I'm very glad to have each one of them as my son or daughter.

Tonight I feel blessed!  Abundantly so.  Even with 4 kids screaming and one pouting and two ignoring the world.  It's my life, and I'm loving it!

Saturday, January 22

Going OUT! :)

Today we hired a babysitter and Mike's parents are also coming over and... we're going out!  Today is my 29th birthday and we are going to spend an hour getting the kids acclimated with the sitters and going over dinner and meds and getting ready to go... but when that hour is up, we're on our own!  Our kids go to bed at 7 and the babysitter will help get them down then head out as well.

And Mike and I?  NO IDEA where we're going or what we're doing... but, we're doing it without the kids!  It will be our first time away except for a one or two hour quick 'date' after the kids were in bed a week or so ago.

So, any good ideas of what to do in Orlando or anywhere else in East Central Florida for an evening??

Friday, January 21

Q&A

How do you do dinners with all 8 kids and do you and your husband eat with the kids or later on?

We generally all eat together!  If I'm home alone then I often won't eat at the same time as the kids because there's no way I'd get to eat it HOT, but otherwise we all sit down together.  Our kitchen table doesn't hold all 10 of us, but 8 fit pretty well and 2 are in highchairs so we make it work.  Lynae is in a highchair and self-feeds so she's in a 'corner' of the table.  Micah is on the end next to her, right now.  Then the other corner next to Micah is James.  He gets pushed to the other side of the walkway if we're not eating though, or no one can walk through the kitchen!  Michael is on the side by Micah, Aleksa is between Michael and I, and I'm on the other side by Wesley.  His wheelchair is pulled up sideways next to the table on the other end.  Across from me is Kristopher, Brianna's in the middle, and Emma is next to Brianna on that side. 


As far as who needs help... Aleksa has to either be slowed down or told to eat every single bite... depends on the mode and the minute.  Micah has to be slowed and occasionally assisted.  James needs to be reminded to eat.  Emma needs to be slowed.  Brianna sometimes has to be plain out hand fed.  Wesley we do have to feed completely, because he can't use his arms to feed himself.  So Mike has an eye on Micah and Emma and tells James to eat.  We tag team on Brianna and Aleksa and whatever that minute's needs are, and I have Wesley that takes total feeding.  It works!




Have you considered bathing with Wesley?  That may be the most comfortable!


Although I don't mind bathing with my kids... I haven't thought of this as a permanent solution because the only time I'd be able to do this would be when my other kids are all in bed... which means that Wesley wouldn't be going to bed on time.  We do kids' baths every other night, and this just isn't a realistic solution for us right now.




What are your kids' different diets and how do you prepare each of them, specifically purees?

Oh yes, the ever-changing diets!  Here's a rundown from oldest to youngest:
Aleksa needs food cut up or to be reminded to take bites (but often still crams the entire thing in her mouth).  No dietary restrictions though.
Emma is not on any milk tho she still gets food with milk content.  She has to have everything cut up small and be watched to make sure she doesn't cram too much food in her mouth.  Emma can't have any soft breads or foods that can be 'packed' into her high palate and chokes easily so we are very careful with her.
Kristopher isn't on any alternate diet!
Wesley is actually a great eater and we've not found anything he doesn't like much.  We have to cut everything up but he has no dietary restrictions.
Brianna is my picky child and often won't taste even delicious stuff because she doesn't want to try it.  Sometimes we fight it and she "has to" eat.  Other times we give in and give her something else.  Depends on SO much more than just a yes or no!
James is on Pediasure exclusively.  He'd moved to purees too but now his reflux is severe enough that every time he has purees he throws it back up.  So we've laid off of anything food-like for a while, but when he does eat, it's purees.
Micah eats a lot now! He had meatloaf and corn tonight just it was crushed up and in a bowl.  YAY!  He is still on all thickened liquids.
And Lynae needs small pieces but will generally eat whatever's around us.


As far as preparing purees, I would use baby cereals to thicken up things, but I bought a "Ninja" blender to make babyfood in and like it very much!




How do you handle time outs with your kids and how do you get them to STAY there?

I put the kids in time out different ways depending on 'what is working' right then.  Kristopher sometimes gets time-outs in a chair in the laundry room because then he's alone and that's often better.  The other kids it's generally nearby and in view but not right in the middle of everything.  If the kids get out of time out, we say 'no' and firmly put them back in there, then reintroduce WHY they're there "NO, you hit Emma" and then walk away again.  Eventually they 'get it' and generally stop whether it's because they understand or because they're tired of the routine :)




What type of stuff do your kids do at the Ds clinic?

There are 4 evals-- OT, PT, ST, and educational.  These are with therapists that see almost exclusively people with Ds.  We go about every 18 months or so if we are able so we can know what ideas there are for the future.  We really enjoy being able to get that extra input!




Do you have "help" outside of your parents and Michael's?

Nope, not on a regular basis, but we do have people we can call on to babysit here or there.   This week on Wednesday morning a homeschooled highschooler came over for about 2 hours to help out and fed the kids that were home some lunch while I cleaned up the living room.  It was really great!  We also have a babysitter coming tomorrow (Saturday) along with Mike's parents so that he and I can go out and celebrate my birthday and there will be enough hands-on-deck with the crew of 8 that we'll leave home!



Have you considered homeschooling so you don't have to drive around as much?

I have definitely considered homeschooling and love the idea of it, but I know that right now with the amount of doctor's appointments we're doing, the kids would ALL have to go to every one of those and we would have any time for actual SCHOOL.  I think that some day I will homeschool (more formally) some of the kids, but right now we're keeping Aleksa and Wesley home as homeschoolers the rest of this year and we'll go from there!

Q&A

How do you do dinners with all 8 kids and do you and your husband eat with the kids or later on?

We generally all eat together!  If I'm home alone then I often won't eat at the same time of the kids because there's no way I'd get to eat it HOT, but otherwise we all sit down together.  Our kitchen table doesn't hold all 10 of us, but 8 fit pretty well and 2 are in highchairs so we make it work.  Lynae is in a highchair and self-feeds so she's in a 'corner' of the table.  Micah is on the end next to her, right now.  Then the other corner next to Micah is James.  He gets pushed to the other side of the walkway if we're not eating though, or no one can walk through the kitchen!  Michael is on the side by Micah, Aleksa is between Michael and I, and I'm on the other side by Wesley.  His wheelchair is pulled up sideways next to the table on the other end.  Across from me is Kristopher, Brianna's in the middle, and Emma is next to Brianna on that side. 


As far as who needs help... Aleksa has to either be slowed down or told to eat every single bite... depends on the mode and the minute.  Micah has to be slowed and occasionally assisted.  James needs to be reminded to eat.  Emma needs to be slowed.  Brianna sometimes has to be plain out hand fed.  Wesley we do have to feed completely, because he can't use his arms to feed himself.  So Mike has an eye on Micah and Emma and tells James to eat.  We tag team on Brianna and Aleksa and whatever that minute's needs are, and I have Wesley that takes total feeding.  It works!




Have you considered bathing with Wesley?  That may be the most comfortable!


Although I don't mind bathing with my kids... I haven't thought of this as a permanent solution because the only time I'd be able to do this would be when my other kids are all in bed... which means that Wesley wouldn't be going to bed on time.  We do kids' baths every other night, and this just isn't a realistic solution for us right now.




What are your kids' different diets and how do you prepare each of them, specifically purees?

Oh yes, the ever-changing diets!  Here's a rundown from oldest to youngest:
Aleksa needs food cut up or to be reminded to take bites (but often still crams the entire thing in her mouth).  No dietary restrictions though.
Emma is not on any milk tho she still gets food with milk content.  She has to have everything cut up small and be watched to make sure she doesn't cram too much food in her mouth.  Emma can't have any soft breads or foods that can be 'packed' into her high palate and chokes easily so we are very careful with her.
Kristopher isn't on any alternate diet!
Wesley is actually a great eater and we've not found anything he doesn't like much.  We have to cut everything up but he has no dietary restrictions.
Brianna is my picky child and often won't taste even delicious stuff because she doesn't want to try it.  Sometimes we fight it and she "has to" eat.  Other times we give in and give her something else.  Depends on SO much more than just a yes or no!
James is on Pediasure exclusively.  He'd moved to purees too but now his reflux is severe enough that every time he has purees he throws it back up.  So we've laid off of anything food-like for a while, but when he does eat, it's purees.
Micah eats a lot now! He had meatloaf and corn tonight just it was crushed up and in a bowl.  YAY!  He is still on all thickened liquids.
And Lynae needs small pieces but will generally eat whatever's around us.


As far as preparing purees, I would use baby cereals to thicken up things, but I bought a "Ninja" blender to make babyfood in and like it very much!




How do you handle time outs with your kids and how do you get them to STAY there?

I put the kids in time out different ways depending on 'what is working' right then.  Kristopher sometimes gets time-outs in a chair in the laundry room because then he's alone and that's often better.  The other kids it's generally nearby and in view but not right in the middle of everything.  If the kids get out of time out, we say 'no' and firmly put them back in there, then reintroduce WHY they're there "NO, you hit Emma" and then walk away again.  Eventually they 'get it' and generally stop whether it's because they understand or because they're tired of the routine :)




What type of stuff do your kids do at the Ds clinic?

There are 4 evals-- OT, PT, ST, and educational.  These are with therapists that see almost exclusively people with Ds.  We go about every 18 months or so if we are able so we can know what ideas there are for the future.  We really enjoy being able to get that extra input!




Do you have "help" outside of your parents and Michael's?

Nope, not on a regular basis, but we do have people we can call on to babysit here or there.   This week on Wednesday morning a homeschooled highschooler came over for about 2 hours to help out and fed the kids that were home some lunch while I cleaned up the living room.  It was really great!  We also have a babysitter coming tomorrow (Saturday) along with Mike's parents so that he and I can go out and celebrate my birthday and there will be enough hands-on-deck with the crew of 8 that we'll leave home!



Have you considered homeschooling so you don't have to drive around as much?

I have definitely considered homeschooling and love the idea of it, but I know that right now with the amount of doctor's appointments we're doing, the kids would ALL have to go to every one of those and we would have any time for actual SCHOOL.  I think that some day I will homeschool (more formally) some of the kids, but right now we're keeping Aleksa and Wesley home as homeschoolers the rest of this year and we'll go from there!

And the day just kept going...

As if my last post didn't sum up the type of day it was destined to be... well, this just might finish it up.  As I finished dinner and called the (happy and self-entertaining) kids out of the playroom to come eat, Kristopher walked into the kitchen with an open bottle of bubbles.  As he walks through the gate he grabs the wand out and pours a bunch of bubble solution on the floor.  And didn't notice.

As I tell him to STOP and then look at the trail he's left behind him, I realize that he's been using bubbles (after I'd just told him that it wasn't allowed) for the last little bit out on the porch and that 1/2 of the bubbles container is now on the porch!  And already smeared all over from everyone walking through it...

And now it was also in the walkway from the porch to the kitchen and over a portion of the kitchen.

I got out a damp rag and just started getting some of the wetter spots with that so we didn't spread it all around MORE, and got the kids all to the table.  Then I went into the refrigerator to get out the milk and get everyone's drinks together and out falls a glass container of olives!  And it, of course, shatters on the floor!

So now there are bubbles all over the porch and part of the family room and kitchen and there are olives and olive juice all over the other half of the kitchen along with glass shards.  There are 8 kids at the table, my husband wasn't home, and dinner wasn't QUITE finished.

I got everyone food and between feeding Wesley bites I cleaned up the liquid then the glass shards and went over it with a damp cloth when Michael appeared home from work.

He was a pretty smart man to say "Our mop is gone, and I think maybe you would like me to do bed time and you can go spend a good 2 hours buying a mop and walking around at the store."

And yes, I took him up on it!  I spent 2 hours wandering through Wal-Mart and I even remembered the mop.

Now, I wonder when he was actually planning on mopping since he's in the office on the computer?? :)

One of those days!

Today was wild.  From the beginning it was wild...

First off, as soon as we got the kids off to school (Mike drove them), Lynae had thrown up her orange juice and iron combo from breakfast.  So... instead of getting my shower (which was my plan...) I gave Lynae a bath.  Then I settled each of the 3 at home into a safe spot for a time and I went to get that quick shower myself.  When I got back out I found that Lynae had thrown up again!  Cleaned that up, cleaned her up and we got going some more.

Then I thought... Mike mentioned that it seemed like an awful LOT of Iron that he put in her cup this morning.  So I went to look at the bottle of iron and found that ONE dropper full is 1 ml and is the 'recommended daily value' for infants.  We had been told to give her 1 tsp!  So I looked online to try to find out whether 1 tsp was a 'normal' amount...and I couldn't find much info.  I did, of course, find info about iron poisoning and such... but I was sure it wasn't enough after just 3 days taking it for her to be in bad straights.  She didn't have a fever, etc... so I wasn't that concerned.  But I did call the pediatrician to find out whether the amount I was giving her was correct or not.

Then I went about the rest of the morning wondering whether my little one has been poisoned :).  Not really... but I was wondering if all was well or if she really was getting too much.

So then about 12:30 I realized (as the phone rang!) that I really should be heading out the door with the 3 kids to get to Emma's awards ceremony at 1:00.  I chatted with a friend while I prepped the kids to go... meaning that I got Lynae up from nap after getting Wesley changed, and then I had to go BACK and change him again because he'd pooped...

By this time it was quarter to one and I had to high tail it out the door and to the school (and yes, I did hang up the phone but it really doesn't slow me down much to chat while I do stuff most of the time!).  So... I grabbed the new carseat that needed to be installed in the van and grabbed the 3 kids and got out the door, locked the door, loaded the kids in the car, drove 5 minutes down the road, texted Emma's teacher that I was coming, but running a few minutes late....

When I realized that I'd left the brand new carseat sitting on the front porch.  In the rain.

So, we turned around and drove right back to the house, grabbed the carseat, drove back to the school, signed in at the office... and we had made it just 10 minutes late for the day :).  Of course by then I'd missed seeing Emma get her award (which she didn't really care about, thankfully!) and we got there in time to see the end of the kids' certificates and then to go back to the classroom.  It's just the two exed classes that do the program together so it's not a 'big deal' type of program, tho I hated that I missed it!

Then... Mike installed carseats so I could take ALL 8 KIDS home with me!

WHEW!  It was one of those days!

By the way, the pediatrician did call back and say that YES, Lynae IS supposed to get a teaspoon of the liquid iron daily, so we'll keep doing it but try it in a less acidic juice (orange juice is pretty hard on the stomach) and see if that will keep her from throwing it back up.

Now... we are 8 + mom and having a relaxing afternoon watching TV, having a snack, and reheating dinner that I made yesterday!  Mike is in meetings that will keep him a little late so I'm on my own for the afternoon until after dinner.  Time to play!!

Let's talk

I've been setting up Wesley's "Go Talk" and YAY! It's working! :)

Today at lunch I put him in his wheelchair with the tray and the Go Talk on the tray.  I put his hand on "drink".  I gave him a drink.  Again, "Drink" and I gave him a drink.  Then he pressed the button!  Then, when he finished chewing each bite, I began by pressing the 'eat' button myself then moved after the first several bites and started having him press the button.  I see I need to rework where I have the buttons (so he can reach the 'important' ones better) and possibly even get a different layout, but... this is a beginning!  He's been extending and hitting 'a' button when he wants more to eat!

I'm going to make a new layout that says "more" instead of just "eat" and then some that have specific foods-- chicken, vegetables, bread above the general 'eat' and 'drink' and 'more' so that he can eventually say WHAT he wants more of.

For now, he just knows that he presses something on the board, it talks, and he gets more food.  So he's trying it!  Maybe I'll just set one of the boards to ALL say "more" so no matter which button he presses it says "more" :)  Then start splitting it up to differentiate further.  We shall see...

But for now, he's getting the idea of it!

If anyone has suggestions as to what types of words they use or where they get their pictures (I used 'real' pic's from around the house and some from Google Images to do this initial one.

I also set up a board for Aleksa (using the same device, you can 'save' 5 different sheets of info) but she looked at it and walked away.  We'll try more later... like when she's eating since that is the most motivating thing for her!

Thursday, January 20

A few fun stories

This has been a great week, even with all the appointments!  The kids have done well at home (tho some incidents here and there with my two little trouble maker 4 yr old BOYS at school...) and we've had a good week overall.

On Tuesday this week Brianna was DRY and was doing such a great job with going to the toilet that I praised her about being dry.  She was sitting in Micah's booster chair working on a puzzle.  Or, rather, asking me to work on a puzzle because it was still well beyond her abilities with that one but she wanted to see the final princess picture.  So she was in his booster and she got up, soaked, and was sent to the bathroom to go change her pants and to 'finish' on the toilet.

Except that it was quickly obvious that there would be no 'finishing' because everything in his seat was well-saturated including the buckles.  Out with the old, in with the new... that chair was washed, wiped down, lysol'd and sent to the other room to dry out for a day and a loaner booster seat that we still had after we replaced some of our other chairs came on in to the kitchen.  Micah seems to like the 'new' seat (we haven't changed it back yet) but he needs to be a little higher up to the table I think.  Never a dull moment.

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Yesterday was Kristopher's award ceremony where he got a certificate for perfect attendance!  He smiled so sweet and walked across that stage :)  Proud momma :)  I'm actually amazed at how few parents go to the first grade ceremonies compared to the Kindergarten ones!  I was glad we could be there for him and he is very proud even if it is "just" for attendance!

After the awards I checked Brianna out of school since she had a pulmonology appointment that day and we live 15 minutes away from school (toward the doctor's) and I wasn't driving back and forth.  She's only in PreK and she can miss a day :).  So her teacher brought her up to the front office then we began walking to the car.  Before I had anyone in, Michael called and said he'd left something in the Cafeteria.  So... off we went to walk back the length of the school to the cafeteria to get it for him.  Michael had already left since he needed to go back to work and I was waiting on Bria.  Then back to the car so I could load up the 4 kids into it.  I had the minivan.  You wouldn't BELIEVE how many trips I made around that car trying to get everyone buckled!!

I started letting Aleksa in, then went around to put Lynae in, then back to the other side to get Wesley in, and then Brianna was ready so back to the other side.  I then had to finish buckling Aleksa and then Brianna asked for help... Around and around and around.  Eventually everyone was buckled and I slid the stroller in under the front row's feet but it hit a backpack, which I had to go back to the other side of the car to dislodge, then back over to put the stroller the rest of the way in.  WHEW!  I'm just glad that it was a beautiful day out weather-wise so I didn't melt or freeze out there!

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Aleksa has, for the most part, ignored any and all attempts for me to get her to mimic my talking.  Pretty much just stares right THROUGH my head as if she can see things on the other side of me.  She's a SMART kid, and I thought at first it was really more the language barrier, not understanding that I wanted her to copy me.  That could be it, but alas, this week she's started to do it!

Lynae is now "Lala" and I'll take it!  Aleksa has also said "HI" appropriately twice this week and attempted to say "bye bye" instead of just "Pakakakaka" once.  Now that she has the idea and realizes she'll get a strong response, she's wanting to do it!  I'm so glad to see language begin to open up for her!

In related news, I got a little further into the "go-talk" programming by actually designing the pages to go into it and printing them out.  So now I just need to figure out how it actually works (again) and start seeing if we can get it to be useful!

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We've, thankfully!!, had a few meals brought to us by folks at the church and that has been a HUGE blessing to us!  Today, however, I knew that I needed to make supper and I knew that I needed to cook ALL of the meat that I bought or it would go bad... or I'd have to freeze it and it may as well go bad because I'm bad about using frozen meat...  So, I decided I was cooking.  About 20 minutes before our ST came!  Oops...  Well, I had 2 1/2 pounds of meat all seasoned and ready to be made into patties when the doorbell rang (which I ALWAYS forget will be happening on Thursdays... without fail... WHY??).

I think she must think we're this crazy all the time, because if there is ONE THING that you can do to make our house turn into a zoo in about 30 seconds it's to introduce the idea that the kids should be eating NOW, when NOTHING is ready!  All of our kids know that when Mrs. M shows up... it's time to eat!  Who cares that it's 4:10?  No one!  It's time to EAT!

So... A hungry Brianna climbs up to the table and starts telling me she wants a hot dog.  Wesley, in his wheelchair and watching me start to cook, all the sudden is in meltdown because rather than COOKING, I should be FEEDING HIM.  Lynae is ready, she's one of the first to say "ME!" when I ask who's ready for supper.  Aleksa is then at the gate crying because if everyone else is in the kitchen, she should be too or she might starve to death.  Micah and James come running, ready for fun with Mrs. M.  Now the entire house is in chaos, I have 5 lbs of ground beef on the counter, I have no food or drinks ready for the two boys doing feeding therapy, I don't have food ready but have 4 kids that are at the table and/or begging from nearby and at least 2 kids saying "mama!" at me needing/wanting something that I can't make magically appear.

After getting the boys settled, Lynae her cup, Brianna and Aleksa both a drink (to tide them all over until I have FOOD made), and giving Wesley a drink of his milk (which he then spit out and protested louder about), then I decided that Brianna's request would be made... and once again the kids had hot dogs for dinner.  Delicious, nutritious, and covered with ketchup, right?  Along with some peas and Aleksa also had some salad since her empty leg didn't appear to be full from the hot dog, peas, and drink.

I did get those hamburgers made with 1/2 the meat then took 1 pound and browned it and prepped it for tacos and another 1.5 lbs and made it into a meatloaf and stuck it in the oven.  Now, I have 3 nights worth of dinner... not including tonight because the kids already ate hot dogs!  I may freeze one of those meals so I have it for next week, but I was glad to be able to actually MAKE all of that and it all be things that we will eat.  LOVE that the only 'odd' ingredient I needed for the meatloaf was an onion and I happened to have one :).

Oh, and our ST has been coming to our home almost non-stop for the last 4 1/2 years since Brianna started therapy with only about a 4 month break from Sept-Jan last year when Micah aged-out of early intervention and we hadn't started back with private feeding therapy again due to insurance caps.  So, she has watched us grow from 2-8 and changed houses with us three times and knows just how nuts we are and how much we love our kids AND how crazy the house can be one minute and how CALM the next.  She also knows that I never remember that she's coming and she's good with a go with the flow attitude :)  Which is also wonderful because as of next month she will have two more little Cornishes in her care as she begins to work on communication skills with Aleksa and Wesley!

Wednesday, January 19

Pictures!

I know, it’s been a while… and I haven’t really taken that many pic’s to start with… but here’s what I have!

Wesley in the Kimba stroller before we finished adjusting it.  He makes the goofiest faces, but he LOVES being able to be upright and see everything!  Right now we’re using the stroller mainly just for feeding since we don’t have another highchair that would fit him well.  It’s very heavy to load and unload 20x on doctor’s days so we are using a basic umbrella stroller for the many appointments for now…

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Snack time… cheetos!

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The hooded caper.  Can you name that child?

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Another of goofy boy’s grins, complete with some cheetos

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We played outside on the playset the other day.  It was just starting to get cool enough in the evening to need jackets…

Another hooded boy.

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LAUGHING! :)

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Emma at the attached little picnic table

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James trying to help Daddy…

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Micah getting in trouble for pushing James…

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Aleksa not so happy to be there at that moment…

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Wesley just taking it all in (he enjoys being outside and we’ve tried the swing… but he’s not quite ready yet.  He’s still scared of it!)

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Mike on the playset putting the tarp on and James ‘helping’ again… sorry it’s blurry!

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Brianna just chilling…

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I believe Kristopher had decided to run laps around the house by this time, so no pictures of him!

Tuesday, January 18

Results!

Just a quick post because it's late and I'm tired :)

Lynae's bloodwork results came back and they showed low hemoglobin AND low iron! YAY!  This is a very good thing and means she just needs supplemental iron.  Though Brianna's results aren't back yet, the similarities of the two girls' bloodwork and something to do with some of the additional tests that were done for Brianna gave both the Endo and our Ped the impression that we may have been dealing with a type of hereditary anemia which is NOT iron deficient anemia.

The other type that they told me about is more in the family of Sickle Cell and those conditions.  Of course it isn't Sickle Cell, but that's the one people are most aware of.  The severity differs but based on the girls' test results, the outcome would be regular blood transfusions, significant issues as a side effect of those including additional issues with the heart (Brianna had open heart surgery and Lynae is having an Echo on Thursday due to a murmur).  The condition is life threatening.

THANKFULLY THIS IS NOT WHAT WE ARE DEALING WITH-- at least not for Lynae and not likely for Brianna since the reason it was brought to the table is because BOTH girls' tests showed multiple symptoms for it.

Now... still not sure what we're dealing with for Brianna since I don't have those test results, so continue to pray for her please!  In the mean time, I bought a bottle of liquid iron today and Lynae will start getting that daily :).

I bought the iron at the same time as I picked up James' new medication... Thyroid meds.  His hair has been just awful lately, so coarse and thin and I was almost hoping that this is what was gone since it would explain it all and be treatable.  Otherwise I was going to be afraid that it was something more severe and complex.  His levels of TSH weren't off the charts, but they were high and enough so that he was started immediately on meds to help regulate them.  He will go back for bloodwork in a month and see the dr again in 3 months to adjust meds as needed.  Unfortunately, Hypothyroidism is an 'official and forever' type of diagnosis and James will likely be on medication fort he rest of his life.  Thankfully, it is easily managed with meds and I hope that having this medicated will improve his hair... and may even help with some of the 'helpless' behaviors and laziness that could be legitimately from being tired (or could be because he's 4 or jealous of the new kids, or just because he's James :) ).

We also saw the GI doctor today and we're continuing on as we have been... He's staying on his Prevacid which has worked well lately and with the EryPed for motility.  He's not quite 6 months out from his bout with Salmonella and in April when he goes back to GI we'll likely do two gastric emptying studies... one for liquids and one for purees.  He's been spitting up purees when we give them so we've significantly backed off on those and he's back to almost all Pediasure... This could be a temporary thing or he could be having issues causing this.  We're going to try some purees through the tube soon and see if he keeps those down better than when we give the purees orally.  We shall see...

For now James' GI stuff is the same, added a med for Thyroid, added Iron for Lynae, and I am ready for bed :)

LOVING my Medical blog too with all the scheduling of appointments and looking up prior info from appointments.

Tomorrow is Kristopher's awards at school, April's coming so I can unearth my house a little bit, then Pulmonology for Brianna in the afternoon.  Youth group in the evening for Kristopher.  It promises to be another eventful day!

PRAISE GOD for good bloodwork results for Lynae, and please continue to pray that Brianna's will be just as favorable!  THANK YOU!

Another week, another long list!

This week promises to be just about as busy as last week.  Didn't think that was possible?

ME EITHER.

Yesterday Brianna went to the ENT (yes, on a holiday) and she likely needs one ear tube to be replaced.  The other has an open hole so no tube was placed last round.  She's had constant issues with the one ear, though, and goes back in 3 weeks to determine if it's cleared up or whether they'll schedule the procedure.

Today we're off to GI and then to Endo both for James.  Lynae went to Mom's Morning out (called KAD) at the church this morning and 4 went to school, so it's Aleksa, Wesley, James, and I this morning!  Thankfully the appointments have some space between them but not SO much space... and both are 40 min-an hour in the SAME direction! YAY!  Mike's mom is taking Lynae after KAD and then will watch the others as well when Mike brings them home from school.  Scheduling has been nutty and we are grateful for grandparents' help when the appointments overlap school dismissal!

The rest of the week we have a pulmonology appointment, an echocardiogram, 3 flu shots and a set of 5 year shots and two award ceremonies at school... so far.  Probably looking at another visit or two this week as well once today and tomorrow are done with...

I made a fun bag of stuff to do while we wait at the doctors' offices, tho, since they're really getting just about as tired of them as I am :)  The diaper bag stash isn't feeling so "new" anymore!

Sunday, January 16

So, how do they get in trouble?

I was just talking to my friend Erin on FaceBook and she asked me if Micah ever gets in trouble.  Oh boy, does he!  And so... here is a post about what each of our kids likes to do (right now) to get into trouble...

Let's start with Micah.  He's such a little love with his chubby cheeks and glasses and his million dollar smile!  He greets everyone with extended arms and snuggles in with his squshy little body.  He then trails anyone with a talking toy and snatches it from their hands! :)  He and James are BIG TIME buddies!  They follow each other from room to room a lot of the time and you can usually find them playing in pretty close proximity to one another.  They may not interact while they play, but they are 'connected' still most of the time.

Then comes the random moment when Micah decides that he would like to see, once again, whether James will fall down if he pushes him.  And he does.  James still hasn't figured out to slug him back.  Boys will be boys...  And Micah will spend a lot of time in time-out!

At church today Micah kept throwing toys in the trash.  Why?  No idea.  That was a new one (to me anyway).  The teachers put him in time out, which he didn't care about and promptly left.  They now know to call me if they're having trouble... because he won't continue it if Momma gets called in.  Promise :)

Micah also just moved to a toddler bed.  This was a big trust-thing for us and we felt like he was ready to learn to stay in his bed at night and sleep.  Unfortunately, the BLINDS are a HUGE calling to him and he's been in trouble twice in the last 24 hours for playing with them!  Tonight I walked into his room to get James since he was fussing and I saw Micah 'pop' into a straight laying position! LOL  He didn't want to get in trouble! :)  He really is a sweet little boy!

Now for James, since he is sometimes being picked on by Micah...  He is adorable and snuggly and his little face just says "I'm cute and I know it!"  Well, he's the instigator!  He will walk over and bump Micah but make it look like he didn't mean to.  I really had to watch to see it because I wasn't so sure if it was intentional or not for a while.  James still has such an awkward gait that gait I thought maybe he was just clumsy.  Nope!  Then he gets pushed over... LOL

James is just enamored with Wesley!  It's sweet, really, when you see him crawl down on Wesley's level right up into his face and look with those big beautiful eyes right into Wesley's face... until he screams!  James has a very projecting voice, and he's got a language all his own.  We call it Jameseneese.  So James will go RIGHT into Wesley's face then start jabbering in his language on a high pitch at the top of his lungs!  Wesley isn't so keen on that.

If James isn't yelling in Wesley's face, sometimes he's seeing if he can learn new ways to get past "the obstacle".  That obstacle, of course, would usually be a person.  Frequently, right now, it is Wesley.  In the past it has taken the form of Lynae and Emma and occasionally another random child laying out on the floor minding their own business playing with a toy.  James is pretty sure that these obstacles can be mounted and climbed over and that it will save him some time and energy of going around them.  Unfortunately for his obstacles, he has bony knees.  Fortunately, though, he stops when we see this about to happen and he does, in fact, go around them.

James is learning to undress himself.  By taking his pants off.  And, under grandma's watchful (or, not-so-much since he was supposed to be sleeping) stripped off clothes... and diaper... then painted.  Everything.  I'm glad I missed that event.  He continues to take his pants off but not his diaper.  YAY! :)

James' other feat with his supernaturally loud voice (which we think may lessen a bit once his hearing improves from the ear tubes) is that in his classroom at school he likes to scream.  In turn, Micah screams as well and I understand that the entire classroom may go down in shambles after this.  Why does he scream? No idea.  But, he does!  And instead of listening to his teachers, he eventually gets taken out of the room.  When he reenters the room... more screaming.  Yes, there is a behavioral specialist that knows my boys (and Emma) well and works on these types of things with them and the classroom teachers to see if there are causes for it.  Otherwise, James just likes to hear his own voice and see what 'using' it can do as far as getting him in trouble goes :).

Brianna is the third preschooler in the house so it sounds like she should go next :).  Brianna is a sweet and loving little one that is my little shadow.  She loves to play with dolls and her new stroller for them is the next best thing to having a real baby to play with.  You'd think she is just an angel some days... until you ask her to do something she doesn't want to.  Then, you can almost see the shadows as the horns raise on her sweet little innocent head... Tell Brianna to go do something she's not in tune with, and unless followed by a stern look, a real 'threat' (not a fake one, she'll know if you're bluffing!) and maybe even start to make-good on it (like, no doll until you go potty! and then you take the doll and wait).

The other area Brianna gets in trouble the most in is with EATING.  This has always been a struggle because she's never had a really strong appetite and is a very picky eater.  Our dinner routines consist of us saying "take a bite Brianna."  "Take a bite."  "Brianna, eat what I put on your fork."  "Brianna, do you want help?  Talk to me if you want help, don't sit and whine."  "Brianna, take a BITE."  And yes, each directive is usually followed with us physically helping her to do it.  Don't let her fool you... this is not a matter of helplessness!  This is a matter of control :).  She likes to have it!  LOL  And she loses it when she decides she's not going to just sit down and eat what's served and instead would like "a cracker, please??" :)

Kristopher and Brianna bicker on and off.  Though Brianna's speech is difficult to understand, we all know what she's saying a majority of the time.  Kristopher and Brianna are both 'leader' personalities and most of the time when Kristopher is sent to go sit on his bed or to come in from the porch it's because he's "taken on the dad role" to the other kids.  Making them sit, stand, go, climb... or whatever it is that he's trying to get them to do isn't allowed... because he's not the dad... and they all know to tell us by the gigantic howls that they so lovingly produce.  Kristopher is pretty good about immediately getting as far away as possible as soon as the alarm is sounded, but the guilty look on his face tells on him every time :).

We also find toys 'blocked' a lot of the time.  Kristopher will find some toys that the kids have been enjoying and... just for kicks... put them where the kids can't get to them.  Such as in the corner of the playroom with two sets of chairs and a table in the way.  That was the latest hiding spot for the 3 baby strollers and a host of long haired pajama clad cotton princesses who were lonely without their friends to play with them along with a monster truck and a rain stick.

Emma loves that rain stick, and will do just about anything to get it back from someone.  She won't, however, climb through two sets of chairs.  If someone else has it, though, she has no issue just scooting over and taking it right out of their hands!  Emma's generally not very forceful but if she feels like it, she may just knock your shoulder with her hand as she takes the rainstick so you fall down at the same time as she takes your toy.  It only works if you're seated, but she seems to have perfected this art.

Emma also hates vegetables.  She doesn't seem to care what type, how they're cooked, etc... she just doesn't want them.  I find this peculiar since a year ago she'd eat them without hesitation, but I still just make her eat them.  Emma will go through "faking" not understanding and will stare at you like "what do you mean?  if you tell her to eat them.  "Pick up your spoon" I said tonight since she was trying to eat creamed corn with a fork. "Emma, put down your fork."  "Look, Emma, your fork (showing her), put it down (showing her)."  "Emma, pick up your spoon"  Yeah, took 6 tries to get her to pick up her spoon then she stared at me when I told her to eat the corn.  Then I shoveled it on down her mouth and we went on our way.  She KNEW what the corn was, KNEW to use her spoon, but somehow she thinks we'll not realize she knows??  No idea... ;)

Let's see... that brings us to Lynae.  Lynae is a momma's girl and a sweet little snuggle.  She loved playing outside the other day and when I needed to come in to get Wesley a new bib and grab jackets for everyone, she came in too.  We'd been eating fresh oranges right off the tree and she still had a little in her mouth.  After a second glance, though, I realized that the orange she was holding was missing some peel.  Yes, it was in her mouth!  And along with the peel, out popped an acorn.  Old habits die hard (she's always liked eating acorns...).  She doesn't put too much random stuff in her mouth, but occasionally she sure does!

Lynae is also into practicing Jameseneese lately. Just at the baby gate going in to the kitchen and only while I'm prepping meals, though.  I can lock that gate and all she has to hear is the click before the banshee in her comes out!  She's sweet and snuggly, but BOY does that little girl have a temper!  She's gotten a few trips to her bed before meals when she's sure that I should be feeding or holding her while everyone else waits for dinner.  After all, she's the princess, right?

Aleksa and Wesley haven't really gotten many behaviors that get them in trouble here very much... yet.  Wesley is sure he's supposed to be held all the time which just isn't feasible, so we make arrangements for him to be held some, to watch some, and to lay and be angry and upset some too.  Aleksa mostly just likes to fuss when she doesn't like how something's going, but lately here we've been able to get her to stop with some redirection for the most part.

I'm sure there's more about each kid that I could describe... but there it is... one big long post about how our kids get in trouble here lately :)

Calling CP moms (or friends w/ CP!)

Several people have commented or FB messaged/posted to me that you could help if I have CP questions. Well, here's my first round :)  Since Wesley is still very new to us and none of our other kids have similar difficulties to him in some areas, I need your help :)

The first area is bathing.  He has spastic CP with all four limbs affected, and when he is either startled, excited or upset he is VERY stiff.  For the last few weeks we've been bathing him practically flat in the tub, supporting his head and going quickly.  For all of our other kids, though, bath time is a FUN time!  We want him to enjoy playing and possibly be in the tub WITH them as well since, yes, we let the kids bathe together.  Right now that's not a possibility for my back or his.

He was getting red marks on his back from the floor of the tub, and we bought an infant foam pad made for bathing newborns to help with that.  It doesn't reach from his bottom/hips to his head, so we still have to hold up his head, but it is at least something.  We are looking to get something immediately and likely won't go through insurance for it simply because of the length of time it would take for them to get him approved and get it for us.  So, we're looking for something that's reasonably within our budget.

Most importantly, we need something so that bath time can be a fun time for him and not a stressful time for us!  I want to also mention that in addition to his spasticity in his legs which causes him to fully extend his entire body, he also cannot straighten his legs when in a seated position.  So some of the chairs which support the entire leg but are at an angle (such as a seated type position but with the legs extended) won't work well for him...

One that we saw is this: http://www.especialneeds.com/childrens-chaise-child-seat.html  It's like a tumble form almost and looks like it would be easy enough to use in a kiddie pool in the summer time or even in the playroom as just another seating option for him.  The biggest thing I dislike is that it looks very bulky to store.

Another that we looked at is on the same site http://www.especialneeds.com/bath-toileting-diapers-bathing-bath-shower-chairs-otter-bathing-system.html and is called an "otter" bath chair.  This looks more compact, less comfortable, but likely able to store better and with lots of kids and the desire to occasionally take overnight trips places throughout the year, I'd like that option.

Here is a third that was suggested, the Dolphin chair: http://www.adaptivemall.com/wedobach2.html

So my question for you all would be whether you have tried these chairs (or ones similar to them) and do you recommend them or not.  Also, if you have a bath chair that you like, what kind is it?  Would you please leave me a link so I can check it out as well?  We are looking for something inexpensive for this initial purchase and in the future may need to do something 'more permanent' or more versatile through insurance, so both the super-inexpensive variety and the ones you really LIKE would be great to know!

Ok, second question is what your kids without verbal language are using to communicate.  We use sign language with our 5 kids with Ds, and will continue to sign to Wesley as well as with our other kids, but since we don't know the extent of his vision difficulties yet... and he doesn't have the ability to form or even approximate most signs to be able to sign back to us, what are your suggestions for communication?  We are looking at a picture system to begin with because that takes away the language issue as well (Russian vs. English).  We have NO IDEA what his cognitive abilities are!  So he may take off with something or we may find that it's too difficult an idea for him to grasp right now.  BUT-- we will start off with the guess that he is not cognitively affected except for an obvious orphanage delay and we'll go from there...

On a side note, we are also beginning to use a picture-based system with Aleksa, even though she's really understanding the language, because she is still only approximating very few words (added "lala" on this week... which is her word for Lynae!).  We're going to start using it more even with Brianna, since she's having so many more complex thoughts that she wants to share but she just can't find the words to get them out there to tell us!

So... what picture-based communication have you used, or if you have another mode of communication, please share that!  We're not looking at purchasing equipment right now, but we do have a small 3x3 communication device that we can personalize with our own words and such.  We also have access to an i-pad that Michael has for work but that is very limited access (unless, of course we win one LOL-- don't forget to enter the Malone family's iPad give away!!).  Otherwise we're thinking about just a notebook with printed out pages with what we are having the kids choose from.  It is a start until we figure out where we want to go with it.  I have a disc of pictures to use with it and many real-life photos to use as well.

Ok, that's all for now... thanks for any ideas, suggestions, and I'll certainly be back for more as we have our doctor's appointments-- especially after the orthopedic doctor when we can know what positioning is 'safe' for him with his hips however they are.  :)