How surgery day #2 went

Friday was definitely a lot smoother of a day then Thursday, but apparently we can't have a day without mishap!

My 4:45 wakeup call and getting Wesley and Delaina out the door went smoothly and the drive up to Arnold Palmer was fine.  Dr. Lesher is one of the doctors that was working on Wesley and she came up to me as we were signing in downstairs and said hello, then she held the elevator for us and talked to Wesley on our way up to surgical waiting.  Wesley hadn't been very happy about being there.  He knew what was coming!  After a little chat with Dr. Lesher, he was much calmer and happier then he had been before!

Unfortunately, the doctors didn't order a pre-med and when it was time to take him back, he screamed and freaked out.  I will make sure to ask in the future for a pre med so he can relax a little before going back.  In the past he's always had it, but I didn't know that it hadn't been ordered this time until they were already there to take him back :(.

I sat and talked with a mom of a little boy with CP and another dad of a boy with CP while we waited.  I also met a woman whose son is 16 and was just diagnosed with stage 4 cancer.   Please pray for K, her son, for God's will and that he would have a personal relationship with Jesus Christ!  I don't know if they are Christians but I can't imagine tackling that without the knowledge of salvation.

Wesley did great in surgery but was inconsolable afterward.  He was screaming and thrashing around when Delaina and I were allowed to go back to him.  The nurse seemed to think she should be helping me more because I had a screaming 8 week old along with a screaming 7 year old, however despite the cries, both were just fine.  The worst pain for Wesley was just having been intubated.  He was simply MAD, and Delaina was crying because Wesley was!  With that knowledge, I reminded her that babies don't die from crying, and we were just fine.  Of course it's not fun for either of them or me, but I didn't expect her to go out of her way to help when there really wasn't any type of emergency situation going on.  No one was hurting, just mad and scared, and being held by a stranger (with God knows what on their scrubs!) wasn't going to solve those problems :).

We were released just before lunch and grabbed food then went to a park to eat.  Afterward we drove home!  Uneventful for us, which is always good!

Unfortunately, I got a call from our babysitter that our microwave/ oven hood was dead.  And, one of the kids had had a moment of bad choices that landed her in her room for a while.

So, despite the day going well, we still had an appliance break down at home.  I think it has been something every day since Sunday!  Thankfully, the week is almost over.  And so far, today has gone without incident! :)

Surgery Day #2—and How Day #1 turned out!

Today is day two… Wesley will be having his g-tube replaced by a mic-key button today and he’s receiving Botox and Phenol injections to help with the spasticity.  He should be a HAPPY camper after today’s procedures are done because he will have a lot more mobility AND no more tail on his tummy

As for Thursday…

We started the day at 4am waking up and getting dressed… then at 4:20 the power went OUT.  Flicked on, then back OUT.  Then on for a second, then OUT.  And it stayed out for the next hour.  Unfortunately, my mom arrived at 4:30 and we needed to leave!  So, we left the pitch black house with my mom and 6 kids and drove her car and Mike’s van with three kids to Orlando for surgery.  not a really great feeling to leave them home in the dark, even if they had lanterns!

During the course of the morning, our neighbors brought Kristopher and Lynae to the church, my mom brought the other 4 kids to therapy, then my mom grabbed McDonald’s and picked up Lynae at the church after.

Michael’s and my morning consisted of registration, admitting, getting the two boys’ records UNCROSSED… since they had the wrong kid with hypothyroidism and the wrong kid with a casein allergy!  Oops…

They took Micah back, did his tubes, then called us for him as they called James back.  They arranged for the boys to have their neck x-rays to screen for instability in their necks while we were there, so Michael stayed with Delaina (after the nurses OK’d her coming in to recovery… the receptionist said no way no how… but was overridden thankfully!!) and I brought Micah down for x-rays.  James came out after we came back up and he was surprisingly HAPPY!  Not miserable or fighting!!

James’ procedure was to put a g-tube back in.  He had one for the first two years that he was with us, but we never had to use it except when he was hospitalized with Salmonella.  Then… as soon as the tube was taken out… he started refusing to eat.  Thankfully, his body’s lack of healing came in handy.  His tube site never closed up!  Whenever James would eat well, his shirt would end up wet.  So, the doctor was able to thread a guide wire through that existing opening and pull the tube right through!  No incision whatsoever.  According to James’ behavior the rest of the day, really not much pain either!  We did use regular Tylenol just to make sure he’s ok, but no need for anything more!

And both boys successfully had “long term” tubes placed in both ears.

We had an… unusual… x-ray tech for James.  I just hope the films really show full flexion and extension for the spine x-rays.  She pulled his jaw down instead of tilting his head toward his chest.  Not exactly the same! :-/

Then, we tried to leave.  By tried, I mean… unsuccessfully.

Mike put James in his van and I put Micah and Delaina in my mom’s car.  Mike backed out of his parking space.  I waited for him to drive by.  Then, my phone rang.  He was only parked three spaces down, so I was looking at his car… but he was calling!

When Mike backed out, his transmission cable disengaged from the gear shift inside the car.  In other words, his car was in reverse and the gear shift was “loose” and was no good to try to get the car out of reverse!  If he turned the car off, it wouldn’t turn back on without getting it in park, which he couldn’t do.  And he was on the 3rd floor of the parking garage by the hospital!

So… while Michael messed with his car to try to find out how to fix it (with the car running and emergency brake engaged!) I called the hospital then was transferred to security.  Two different security people came out and the goal was to back the fan up to the doctor parking area where there’s more spaces, and to leave it there until we could get it towed.  Ironically, as we pulled in that morning there was a car broken down on the first level in the way and this was the second for the day…

After quite some time, a few phone calls on my part because though we had two cars, we didn’t have the ability to put everyone in my mom’s car because the carseats are too wide to fit three across (we didn’t have our Radians with us), and Michael fidgeting around with the engine and ripping up his dash undercarriage to try to access things…HE FIXED IT!

Well, mostly.  Enough to get home, anyway, so an hour and a half later, we pulled out of the parking garage and headed HOME.  THANK GOD!  Thank you to all of our FB friends that were praying too!  

Michael drove straight to the shop he uses for car stuff and had called ahead and found that they’d replaced the same part on another vehicle just last week.  They said they could have the car back to us today.  YAY!

The evening was much less exciting.  Speech therapy at the house for three kids, and a visit from a friend to pick up something she’d left… which ended up being Mike and I locked out of the house by Brianna then rescued by Kristopher after we rang the bell 4 times! LOL  We knew everyone inside was ok and safe before we went out, but still not fun to be locked out!

The rest of the day really was uneventful.

Now… for Wesley…

Surgery Day #1

On this morning’s agenda:
James 7:30am Ear tubes and g-tube placement
Micah 8am Ear tubes

This morning the kids’ lunches were already packed.  The carseat and booster were installed for our friends to bring Kris to school and Lynae to the church for KAD.  Backpack ready and waiting.  Clothes out, shoes lined up.  Drinks and meds on the counter ready to go.  Diaper bag and drinks packed for therapy.  Day bags packed for each of the boys and Delaina.  Overnight bag and Delaina’s bed ready to go just in case.  Laundry done.  Dishes very very not done.  And we were off to the hospital by 4:45am.  Fun. Stuff.

Thank you for praying for our boys this morning!  The plan is for them to have their procedures and for us all to go home, however since James is having a g-tube placed, it is possible that he will have to stay the night.  Mike and I and Delaina are all there with the boys and we have two cars to divide and conquer… 

Tomorrow Wesley will be at the hospital at the same dark hour for his procedures.  He’s having Botox and Phenol injections for spasticity and is having his g-tube changed out for a low-profile (mic-key or Mini—not sure!) button.

It has been a crazy week

And yes, I know it's only Tuesday morning!

Monday was filled with diaper disasters, a wild 3-ring circus in the afternoon, take out dinner because that's how the day went, and a stressful evening.

Today is scheduling day... we still don't have any surgery times for Thursday though we finally got confirmation that the surgeries ARE HAPPENING on Thursday (that's always good to know 2 days ahead!).  We got confirmation about Friday already.  I'm scheduling flu shots and well visits, and throwing school in there too!

The morning started off a bit rough with a certain strong-willed child, but I believe we have all recovered and should be able to make the most of today!

One year ago today…

One year ago today I posted this video:

Make a video - it's fun, easy and free!
www.onetruemedia.com

It is AMAZING to realize that Emma has come so far from where she started!  We are so proud of her!

Well, I tried to edit the background of my blog

But part way through making changes it decided I couldn’t change anything else.  Or change it back.  So, here is where it stays.  For a while anyway… until Blogger likes me again.  Might be a long while!

Five surgeries this week!

Would greatly appreciate some prayer covering for each of them

As of right now (subject to change…)

Micah is having ear tubes placed on Thursday. 

James is having ear tubes placed on Thursday as well and is having a new g-tube placed. 

Wesley is having his g-tube changed out to a low-profile button on Friday and is also having Botox and Phenol injections.

 

Three boys, three sedations, three doctors (2 with ENT, 2 with GI, and 1 with physio/rehab).  Two days.

Thank you for praying!!

First trip to the Dentist!

Friday was Kristopher and Lynae’s first time going to the dentist!  The two of them went back, along with Delaina and I, and the hygienist showed them on a dragon how to brush their teeth.  Then how to floss.  Then, how they would take x-rays and what the dentist would use to clean and suction their mouths.  All of this was new to me (not the how-to, but the fact that they took the time to ‘teach’ and didn’t just go do it!).  It was nice, since both of them could understand and apply what was being said, granted the whole “how to brush” thing could have been skipped, but that’s ok .

They went back together, but without me, which is a very different thing than any of our disabled kiddos!  I haven’t ever allowed our nonverbal kids to go anywhere that they are being treated without me there.  It is just different when you have a child that can tell you about the experience then when you have a child that you KNOW is going to be ‘aggravated’ by it and who cannot tell you how that was dealt with.

So… they went back together, alone.  Both of them did well!  No cavities for either of them, and we now have a plan in place to begin working on Kristopher’s mouth…

Welcome to the world of orthodontics.

He’s going to have spacers put on in the back of his mouth in the next few weeks (maybe as early as next week, I haven’t scheduled it yet because of timing with the appointment) and then have brackets put on his front teeth a week after that.  Then he’ll go monthly for adjustments over the next 5-6 months after that.  And we get to pay for it… LOL.

So, they each have a new toothbrush and toothpaste and a small choking hazard (as Kris kept pointing out to me!) toy for each of them, and two sets of pearly whites that have been officially inspected!

Unfortunately, I underestimated the amount of time this would take (since my other kids’ appointments are generally about 30-60 minutes long at the dentist they go to for special needs kids in Orlando) and even though we didn’t have to drive an hour to get to this dentist, it still took just as much of the day!  It was almost 3 hours by the time we left at 11:30 (we arrived at 8:40)!!  I was then in a rush to get Kris to school (in time for… lunch… ) and get home to let our sitter (who we never confirmed the date with and she jumped out of bed and came at a moment’s notice when we called her this morning! Oops… thank you Angel! ) go home and for a friend to come for lunch and to hang out a bit in the afternoon.

I suppose I should plan that better next time!

This was a week of MONDAYS!

Sometimes a week can go wonderfully and it STILL feels like a week full of Mondays.  Full of days that just don’t quite start or finish the way we thought they could, or should. 

Our weekend (Saturday) started with Kristopher not feeling well and missing a birthday party that night.  Sunday brought another kid possibly sick (though he ended up being fine) and that was also family picture day. 

Then, I got no sleep that night.

Monday I cleaned house alongside our friend who comes to clean.  Then I packed up my 8 little people (Kristopher was at school) and was just about to leave the house when Michael called and said he was heading home, not feeling well.  I asked (begged?) if I could leave him with two kids to make the amount of lifting and moving and maneuvering that I needed to do to get this doctor’s appointment I was headed to to work out.  He agreed… and Wesley and Emma stayed home and had lunch with Dad.  As I left our development my cell phone rang.  Kristopher needed to be picked up from school because he was running a fever (though he was feeling fine Sunday evening and Monday morning except a cough).

I then had to call my sick husband who had JUST left the church and gone home to pack up the two kids I left with him and go BACK to the church where Kristopher was at school to bring him home too.  Oops…

I ran through McDonald’s because that’s the kind of mom I am on Mondays when I have too much to do and my kids love me for it .  I was almost there when I realized I’d left James’ cup of formula in the fridge!  I called Michael because at this point I’d realized I needed gas to make it all the way to the doctor and I was on the brink of being late before I got started!

Mike agreed to meet me at McDonald’s and I went through the drive-thru and distributed food… and called Mike back and asked him to instead meet me at the gas station because I needed to keep moving!  He dropped off the cup (it was on his way, thankfully) and I pumped gas.  Then we headed out for the 75 minute drive to get to the ENT appointment for James and Micah’s pre-op.  They’re getting ear tubes in next Thursday (pending any changes… it’s not been secured yet!).

So, off I went with 6 kids to the appointment!  We arrived on time, all the kids went to the bathroom then we went in to the office, checked in, then Lynae needed to go to the bathroom again (I love 3 yr olds!) and we all went BACK to the bathroom, then back to the office .  The boys were seen, we headed out to the car, and everyone piled back in the car.  Having a nursing 7 week old along, I fed her before we started the drive home and we got back on the road about 3 1/2 hours after we originally left the house.  Not too awful!

About halfway home that same sweet three year old once again announced her intentions.  We needed another bathroom!  Target wasn’t too far away, so we headed that direction and prayed she could hold it!  Then, I started praying that the weather would hold until I got all six kids INSIDE the store!  It was about to dump rain. We made it inside!  And everyone once again toileted, and on a whim I called Michael and asked him for our grocery shopping list so I could pick it up since I was already in the store.  Shopping proceeded (Delaina in the stroller, Micah and James walking beside it on either side, and Brianna, Aleksa, and Lynae following and sometimes holding hands 3-across so no one else could walk down any aisles ).

When we walked out of Target the parking lot was a mess of WET, but the sky was DRY!  We missed the downpour!  God is good .  Then I decided to treat myself to a milkshake from Chick-fil-a for my good behavior with 6 kids in tow for the past 4 1/2 hours! LOL  (the kids had lollipops and stickers for their good behavior already!)   While I was still in the Target parking lot getting my drink, the Heavens opened again, and it poured.  I’m so glad we weren’t walking in that!!

We made it home just in time to make dinner and send Michael off to bed.  Poor guy really was SICK.  But my two that had stayed home with him were happy to entertain themselves after lunch and each had a room to themselves to play in while Mike just kept tabs.  Kristopher was hanging out with his video game in another room too.  It worked for all involved!

Then, I got no sleep that night.

Tuesday was Monday #2.  Kris home sick, an array of mishaps and oddities, but nothing major.  A LONG day because Michael doesn’t come home from work on Tuesdays and goes straight to a men’s church group. Kristopher was home so no pick-up there, and the kids skipped karate since Kristopher wasn’t feeling well (and Brianna wasn’t wanting to go the week prior, not sure why still…).

Then, I got no sleep that night.

Wednesday was Monday #3.  Long day.  Tiring day.  Kristopher was still home which throws off our home routine, but that’s all right.  Micah had a bit of an upset tummy which may be part of what the men were passing around.  Youth group in the evening meant that we had dinner then Mike left with Brianna (since Kris didn’t go to school- no youth either!).

Then, I got no sleep that night.

Thursday was the 4th Monday of the week.  I slept in by about 30 minutes, but had gotten up on time to get Mike out the door with Kris and Lynae since she had KAD this morning at church too.  Then I got the other 7 up, dressed, fed, shoes on, hair done, glasses on, teeth brushed, diapered or toileted, lunch packed, and out the door by 9:40 to head to therapy.  It was actually a rather impressive morning if I can say that of myself! LOL.  Nothing actually went wrong ALL. DAY. 

It was just a BUSY and LONG day.  And the no sleep thing kinda gets to ya after a while! LOL  All six of the kids had therapies of one kind or another today.  Aleksa had PT, Emma had PT and OT, Wesley had PT, Brianna had OT, James had OT, and Micah had OT.  Then, we packed up and went to the church where we ate lunch with Michael and Lynae at 1.  Mike kept the kids after lunch for me to run to a doctor’s appointment and Kristopher got out of school just as I got back to the church.  Then I loaded up the 9 littles and headed home.  We got in and settled just in time for our speech therapist to come, and Brianna, Aleksa, and Micah (with Lynae’s help—she feels left out of therapies and “helps” with Micah or James’ therapy sessions for speech!) all had speech.

Mike brought home subs.  Because somewhere between not sleeping, having sick kids, having a sick husband, evening activities, daytime activities, and breathing… I didn’t make dinner tonight.  And I don’t even feel badly about that

Now it’s Friday.  I think we all deserve a Friday!   Kristopher and Lynae are off to their first DENTIST visit… and I have a fun visit with a friend around lunch time!

School Days!

Our weekly schedule changes every week, but in general we are working on school goals and activities 4 days a week and we are going to therapy one day a week.  Homeschooling with my crew likely looks a little different then someone else’s homeschooling day!  Yes, we work on academics, workbooks, and hands on activities!  We also have other activities to work on skills that are working toward a very different goal: self help and independence!

In their formal IEP’s, some of the goals for my children have previously been to identify objects, follow directions, play with others, focus on an activity, appropriately respond to greetings, transition between activities without difficulty.  You know, LIFE stuff.  Things that they’re going to use between now and forever, that will help them to survive as adults in this society. 

When our children are 30, what do we want them to do for themselves?  What are the steps to getting there?  How do we break those steps down in to reasonable chunks and goals to begin working on now?  Of course many of these skills I would expect most of them to do before 30, but start with the simple things that are REALLY important life skills and go from there!  A lot of those may be modified for Wesley, too, with his difficulty physically.

In a typical day of an adult, you would get up, take a shower, get dressed, brush your hair, put on deodorant, eat breakfast, brush your teeth, then go about your day’s activities.  Each of those takes multiple steps!  Right now we’re working hard on getting dressed independently with some of the kids that don’t already, and they can all EAT breakfast on their own (we haven’t begun teaching them to prepare it).

Things like showering independently aren’t something that you just teach while in the shower, though!  Before they are totally independent there will likely be a time when I need to say “did you wash your hair? Did you wash your arms and legs? Did you wash your body?”  In order for those things to be meaningful they need two skills: 1. Be able to answer yes and no questions CORRECTLY based on a previous experience.  2. Know all the parts of their body so they can understand the specific question.  Those are two things that we can work on in many different scenarios that will help get them to a skill goal.

Identifying objects, following directions, answering questions… we spend a lot of time in all sorts of different activities that work on those areas!  Even… when we’re out and about.  Maybe especially!  Practicing and learning skills for use in a grocery or department store, skills for waiting in the doctor’s offices and crossing parking lots…  Those are things that the kids NEED to learn, and they are doing great with them

Of course, we have “traditional” school time too.  Academics and workbooks and puzzles and coloring.  But we are getting a good measure of social and self-help skills in on a regular basis along with the book learning stuff!!

How one photo can show all their personalities…

When some people look at a picture like this one, they think about how it could be better. Maybe if everyone was facing the camera.  Or smiling.  Or if the girls weren’t sticking their tongues out. Or if the baby was up off the floor somehow.

When I look at it, I see each child’s treasures expressed!  Their personalities really come out well in this picture for all but ONE child.  Do you know which one without reading on??

Starting in the top left corner… Kristopher is the guardian!  He’s always watching out for everyone, though he certainly has his moments of causing the trouble.  He’s “flying over Delaina” in this picture, or so it looks.  He’s a in a place right now where he’s tall and thin and somewhat uncomfortable in his own skin, but wants to let loose and have fun and is trying to figure out what that looks like.  We just keep reminding him that it looks like whatever he wants to, because God made him from the inside out just how He wanted him!

Next is Aleksa.  Yep, her tongue is out.  It may be a stereotypical thing to have a child with Down syndrome with their tongue hanging out like that in a huge grin but guess what? That’s what Aleksa does.  Her tongue has barely any tone, and when stretched out it almost reaches her eyes.  Seriously.  And Aleksa is a “no rules” kind of girl.  You say “have fun” or “jump” or “let’s dance” and she has NONE of the insecurities that another almost-10-year-old would have.  She is just FREE.  That certainly shows Aleksa’s “real self”!

Next to Aleksa is Emma.  She’s looking toward the floor.  She’s not jumping or putting her arms in the air like the other kids.  She’s looking away, looking for a balance.  She doesn’t join in with their activities a lot of the time.  The lights overwhelm her a bit.  Everyone saying “LOOK!!” make her turn “inward” not look at the camera.  Her individual pictures show her smile and light that she has in there—but not in this setting.  In a group, or a lot of noise, this is Emma.  In her own quiet hidden place.

Wesley, though he’s not looking at the camera, is sitting tall and HAPPY in his wheelchair!  He loves to be in the middle of what’s going on.  He can’t SEE the camera, so saying “look at me!” when standing more than 3’ away from him isn’t very helpful.  The lights and sounds can overwhelm him too if he doesn’t understand what’s going on, but he’s gotten MUCH better about it as he understands our explanations for what’s happening.  In this picture, he’s just smiling, enjoying the kids around him, and loving life.  That’s pretty typical of our Wesley!

Back on the left again, is baby Delaina.  She’s still pretty much just hanging out.  I was disappointed not to get a smiling picture of her during any of the photos, but really, she is just an easy going baby who enjoys the hustle and bustle of the kids and activity.  A lot of babies would probably be screaming.  Delaina’s just chilling.  Hey, she even has her arms in the air .

Brianna has such a huge personality, but we often don’t catch it in pictures!  She plays shy, gives us a gentle little smile, and we go with it.  But when we get up and jumping and dancing, you can see her with ALL her joy coming out! She’s also positioned as close to Delaina as she can get without being told “hey, move out from in front of the baby!”  She is a little “mommy” to Delaina.

Lynae is toward the front.  She is the one that wants to say “LOOK AT ME!!” and stand on one foot and pat her head and rub her tummy, and show off for the crowd or camera .  She’s also close by Brianna and in at least one of the other shots she is turned around interacting with Brianna instead of looking toward the camera!

James, well, we mostly see his back!  However those that know James know that this really shows his personality! LOL  I actually chose this one because it showed the MOST of his face out of a few that were good pictures!  My second favorite has his total back to the camera, but I did want to see SOME of James! He is an active, WILD child!  And I love him for it.  But this picture surely captures it!

And right in the middle, in front of the wheelchair, is what looks like a quiet and shy little Micah.  He’s definitely the misrepresented one here!  His individual pictures show his mischievous side, but he’s usually got the biggest grin on his face and a twinkle in his eye!

 

Ah, well, 8 for 9… not so bad

And then there were NINE…

After family pictures and pictures of the nine kids together, we had each child photographed individually as well!  These are the ones that I felt they just didn’t take the time to get GOOD ones of several of the kids, but… they are pictures.  Some turned out great, though!

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Aleksa Faith, almost 10 years old, adopted Dec. 2010 from Ukraine

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Emma Hope, 9 1/2 years old, adopted Feb. 2008 from Ukraine

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Kristopher Isaiah, 8 1/2 years old, born to us

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Wesley Thomas, 7 1/2 years old, adopted Dec. 2010 from Ukraine

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Brianna Elizabeth, 6 1/2 years old, born to us

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James Hunter, 6 years old, adopted in Sept. 2010 from Florida

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Micah Daniel, 6 years old, adopted in Feb. 2008 from Ukraine

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Lynae Sarah, 3 years old, born to us

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Delaina Eliana, 6 1/2 weeks old, born to us July 31, 2012

Family Pictures!!

I don’t love our family picture… mostly because I took the time to straighten my hair and then tossed it back so I could dig through a bag in the car on our way… and never took it down again :-/  So, my messy hair kind of does the picture in for me.  But, hey, we have pictures with all 11 of us.  Smiling or not. 

Also, a lot of the kids, the photographer only took 3 pictures.  Four of the kids’ pictures… I don’t love.  But, again, they are pictures!  So, maybe we’ll try again sooner than later, or maybe we’ll try out a different photo studio (we have gone here due to their very reasonable prices and decent quality, but we may have outgrown them now! LOL).

Without further ado…  Family Pictures, September 2012!

For the very first time photographed together, The Cornish Family of Eleven!

We did their suggested “kids” picture.  And I asked for the kids to be lined up by age (they are staggered, back front by age).  It turned out… ok…

Then, the picture I asked for with all 9 kids!  Because this one really shows their personalities… not just all of them lined up in a row!!

 

Individual pictures… tomorrow !!

Alert and aware!

Babies change so quickly…

Delaina loves this seat that was passed on to us be a friend at church, and today she sat and watched the lights, listened to the music, and was quite content then fell asleep under her little play gym!  Down time is good time .  She is learning to interact with her surroundings, be calmed by touch and sound easier, and enjoy and interact more with her brothers and sisters (at least the gentle ones) too!

 

Surprise!!

After receiving two different letters between May and September saying that Wesley’s stander has been denied…

I got a phone call yesterday asking me if they could deliver it!

I still have to get Wesley up and fitted in to it, but hey, IT IS HERE!  

 

The good news

The good news is, James doesn't have strep.  Or, a high heart rate.  Or anything in his chest.  Or a cough.  Or a fever.  Or anything of any interest to anyone.  That's GREAT news!

The not so good news is that we almost ended up in the emergency room to "prove" it!

Today started with a trip to the GI doctor about 45 minutes away.  Both Micah and James were being seen today and I had Delaina with me as well.  The doctor came in and first mentioned that both boys were still not gaining weight very much.  Then I pointed out Micah's "chub" and he agreed he must have not looked at the right curve for him, because he's quite stocky!

I then mentioned that James' g-tube site hasn't completely closed still.  It leaks when he eats and soaks the front of his shirts.  Since he's getting ear tubes at the end of this month, I thought it may be good timing to close up the hole at the same time.  Our GI seemed to think the hole being open was a good thing, because he knows the struggles we've continued to have with James getting food in him (all drink, actually) and we had just discussed his medication change for reflux meds since James FIGHTS taking meds now. 

Instead of closing the hole, he's ready to put the tube back in.  Save James the frustration of being pushed to eat.  Save us the worry of him not eating.  Save everyone the hassle of making sure that he gets the medications he needs.  The tube isn't that big of a deal, so having it there and available again shouldn't be awful.  Right?

I'm still trying to convince myself of this, but I know we've talked about it (Mike and I) over the last few months, how we almost wished he just had the tube so we didn't have to put up with his lashing out from food and meds.  He is STRONG, and is only getting bigger and stronger and harder to contain...

So, news #1 at our appointment was that James is getting a g-tube put back in, and the GI will coordinate that with our ENT so they can do it at he same time as the ear tubes.

News #2 actually happened somewhat first... James' oxygen saturation level was 86.  The nurse tried to do it three times.  First and third time it was 86 and the second she never did get a read.  That's NOT good!  I called our pediatrician as I pulled out of the GI office and asked if they thought he needed to be seen, to which they replied "of course, RIGHT NOW."  Well, 45 minutes away... I wouldn't make it before they closed for lunch.  Because of the poor timing, they instead told me to take him to the emergency room.  REALLY??  

I didn't feel like he was cyanotic or in distress in any way shape or form. Yes, he had a little bit of clear nasal drainage, but he doesn't know how to blow his nose, so that's not unusual!  And he coughed once today, does that count for anything?  Not really!

Thankfully I came to my senses and called our ped's second office to see if one of them could see him and was met with a more favorable response :).  Our regular doctor was up there and would wait on us to break.  Yay!  They were able to get his saturation levels and though initially they showed 71, they quickly climbed as his finger warmed up.  So weird!  Anyway, they swabbed him, took his temperature, checked his eyes and ears and went all out to make SURE there wasn't something underlying that would cause a drop in O2 levels.  He checked out just fine! :)  Good to know he's healthy I guess??

Now we are waiting for a re-schedule of at least James' ear tubes to be when the GI and ENT can coordinate them together.  Micah's may be rescheduled with his, or they may leave it as this month.  Wesley also sees this GI and is scheduled to have his g-tube changed out for a low-profile variety as well as getting his next set of Botox and Phenol injections at the end of the month.  

So, three surgeries for 5 procedures are in the works, we avoided driving 40 minutes to the closest children's hospital to visit their ER, and oh, did I mention that yesterday Lynae went to cardiology and unfortunately her hole hasn't closed yet and she'll be seen in another year.  Darn :(

Now, on to the weekend...

Updates All Around...

Since I haven't been posting regularly, I thought it may be time for updates all around on how the kids are doing!

First off, SCHOOL:
We are homeschooling seven of the kids this year!

Aleksa is 9 and is third grade this year, however she is working on the very basics- learning to match, letters, numbers, colors, following simple directions, tracing a line, basic fine motor skills like holding a pencil or crayon and pincer grasp, basic gross motor skills such as jumping...  Aleksa is receiving speech, OT, and PT from our local therapy center.

Emma is also 9 and also third grade.  She is working on the next step of skills- learning lowercase letters (and getting the uppercase more firmly), counting, fine motor like putting her own shirt and socks on, gross motor such as jumping... Emma is receiving OT and PT from our local therapy center and is on a waiting list for speech when a therapist is available.

Kristopher is our only child attending traditional school this year.  He had to change schools because he was allowed to attend our previous school out-of-area only because his siblings all attended there (since it was the only school that had programs for all of them).  Instead of moving to our district school, he transferred to private school and is attending the school at our church.  This has been wonderful since Michael works at the church and also supports the school!  Kristopher is enjoying it and has re-joined a group of friends he attends youth group and Sunday morning church with who he has been with in different programs since he was 6 weeks old :).  He is in 3rd grade this year as well and is 8.

Wesley is 7 and is in 1st grade.  We are still learning so much about Wesley!  As he becomes more expressive, we are able to see what is "sinking in" and different ways we can engage and teach him!  Due to his physical limitations in his arms and hands as well as being legally blind, it can be difficult to know how to reach him!  He understands SO much, though!  We work with him verbally and expose him to as much as we can!  Wesley is receiving OT and PT from our local therapy center and is also on a waiting list for speech (which for him will be communication skills).

Brianna is 6 and is in 1st grade.  She is working on first grade level in many areas- beginning reading and phonics, addition and subtraction, counting higher numbers of objects, writing letters and numbers, and creating stories.  She is LOVING schooling, which is a big encouragement to everyone else!  Brianna also receives OT and speech from our therapy center.

James just turned 6 and is in kindergarten.  He is working on very basic skills however I think that he will show mastery of these very soon and move on to other areas once we get his energy more contained :).  He knows many of the basics but has "gaps" which we are working on filling in as we move toward using those things to build the next skills.  James is also receiving OT and speech therapies.

Micah just turned 6 and is in kindergarten.  He is using the basic skills he has to draw up the next set.  He has now gotten behavior under control and can focus, therefore I see him also going through a huge growth in academic learning!  He is also receiving OT and speech therapies.

Lynae just turned 3 and misses the cutoff to even be considered for pre-k in our state, however she LOVES doing school!  She attends a morning program at our church two days each week, one of which is when all the other kids attend therapy, and she does school with us the other days.  Lynae is working on upper pre-k and kindergarten skills.  I guess having a "therapeutic/learning home" where we try to turn things in to learning experiences and skill building may have given her an extra 'edge' as well.  She is enjoying both her church class and our home schooling.

Obviously Delaina isn't doing any schooling... but she has her own bouncy seat in our school room and is either in there or in the sling at all times :).

Next area... HEALTH:

Aleksa is doing great! No health issues at all right now.  Her areas of concern were mostly hearing, and we seem to have good months and bad as far as that goes.  We continue to monitor her, but it appears after the last bout of fluid cleared up that she is doing great hearing now!  (listening... a whole different issue!) :)

Emma is also doing well! She continues to be monitored for her heart, but she is hearing good and is otherwise doing well.

Kristopher is healthy as always, thankfully!

Wesley is doing good as well! He's gained 3 lbs since going on the g-tube and I suspect his formula will be increased soon to see a greater weight gain since he is also more and more active since his energy level is up! He's about to have his g-tube changed out for a button-type tube which will be less 'snagable' and give him even more freedom in his movements.  He's also going to have a second round of Botox and Phenol injections (hopefully at the same time as the g-tube!) and that RADICALLY improved his movement last time!

Brianna is getting over a stye in her eye, but otherwise has been doing great :)  Her heart continues to be monitored but that's not so bad in the great scheme of things!

James continues to be our enigma here.  He goes through bouts of eating and not eating... sometimes within the same day.  He also is still on a full liquid diet.  We were concerned he may be headed back to a g-tube however then his eating picked back up again!  We just hope he continues to swing back to GOOD each time his pendulum goes!  James failed all his hearing tests and is getting a new set of ear tubes (his third I believe) at the end of September.

Micah is doing well.  He still aspirates on thin liquids so everything is thickened for him.  He's eating more and more textures, though, which is helpful!  Micah also failed all of his hearing tests and will get new ear tubes (this is at least his 5th set I think!) at the same time as James.  Daddy will be having a FUN day that day...!!

Lynae goes back for her (hopefully last) cardiology visit this week and is doing well otherwise!  THe hope is that her small hole has closed and she is discharged!

Delaina has a bit of baby acne/prickly heat on her head/face/torso (breastfeeding in the Florida heat seems to cause this in newborns more so than when they're born in cooler months/places!), but otherwise is healthy and doing wonderful! She is 6 weeks old now and weighs 8lbs 9oz.  She still is in newborn clothes and some of the 0-3 months clothes and size 1 diapers.  She's a tiny little thing with LONG arms and legs!

Last but not least, DEVELOPMENTAL updates!

Aleksa is IMPROVING DRASTICALLY!!  We decided we would attempt meds for behavior back in May because we could see so much potential, but a total inability to concentrate, stay attentive on any one task, or to think through her actions (impulsivity).  Once we found the "right one" she has calmed her little "ticks" dramatically and has begun to focus and learn :).  Socially she has gone from totally inappropriate and difficult, to being able to interact freely with the other kids (albeit supervised)!  We are so proud of her for her improvements and her desire to change and become a part of the family :)

Emma, well, Emma is Emma :).   She continues to make strides in learning, as I addressed in the schooling area, and developmentally she goes forward and backward on a regular basis.  She follows directions within her known routines and adjusts ok when we change up from what she likes or is used to :).

Kristopher has hit another maturity leap and is so good with Delaina.  He's continuing to learn to be a "great big brother" with his siblings that want to play WITH him, and not to just take over :).  He's doing a great job though and is really trying.  He is such a good kid :).

Wesley now understands 99.9% of everything that is said to him!  He's also started crying for his needs to be met, such as wanting to go out to the play room with the other kids, or to have his orthotics off.  Sometimes it's great... sometimes it becomes a true puzzle and we are working on getting him more communication than just crying.  BUT, it is a first step!!

Brianna is just a little mommy around here! She is so loving and caring, wants to cook everyone meals on her pretend kitchen, lines up all the plates and food and cups in her room to serve, pushes her babies around in strollers and tells them stories.  We believe she also may have an imaginary friend who she's been sharing meals and playing babies with :).

James is doing great in some areas and having a tough time in others!  He has always been such a  mimic, and is now singing entire songs... or rather humming them.  He does the hand motions and singing.  He also is having difficulty behaviorally, but that isn't really anything new...

Micah has continued to mature and learn and is really making leaps and bounds developmentally!  He's also figured how to get people wrapped around his finger.  He's definitely both the charmer and the horribly mischievous child!

Lynae has been growing up so quickly!  She joins in with Brianna in all of their pretend games, loves to help the other kids, becomes miss-bossy with things she wants to lead, and wants to be a helper and leader in most areas of life.

Delaina has just started smiling and cooing, which is such a neat thing as babies grow and learn so quickly!  She pulls her legs up under her on tummy time and pushes herself everywhere, off the blanket usually :).  She has gotten very strong and has really taken to the other kids as well, hearing their voices and calming for some of them as well.

That's all for now... long enough too!   We are so proud of each of the kids and where they are/what they are learning/how they are maturing... but more than that, we love them each for exactly who they are, even without changes and developments.  We consider ourselves blessed!!

Look at that Baby Doll!

She really is a doll… but she’s a REAL one!
I couldn’t help but snap a few pictures of Lynae’s “real live” baby doll in her new doll stroller.  Of course, these pictures were taken OUT OF SIGHT of any children so they don’t get any ideas… !!!  Too cute to pass up, though!
I think she could pass as a vinyl doll in this picture! LOL



She didn’t actually cry, but she contorted that little face to let me know she was about to belt it… and the photo session ended