Random pictures from the last few weeks…

This gentle giant’s name was Shaman, and Wesley rode him (being held by Michael, also riding) using a bareback saddle.  As you can see, they understood each other   Shaman had to be put down last week, but these pictures are an awesome representation of how a 3rd place Kentucky Derby winner and a little 7 yr old former-orphan boy who has quadriplegic CP can share a sweet, sweet bond!

It's been a busy crazy week!

But it's been a lot of fun! And... SCHOOL is OVER!! :) :)  SUMMER is HERE!

Sunday Mike and Kris went to church for a LONG day while Michael was helping teach a class, so the kiddos and I hung at home and enjoyed our first POOL DAY!
We started the school week with a post-op for Wesley's g-tube on Monday and a good bill of health there.
Tuesday was Karate for Kristopher and Brianna.
Wednesday I made one last Sam's trip before summer break!
Thursday was a long day at home catching up on some missed schooling from Wednesday then an evening in the pool for ALL of the kids (and Michael).
Friday was Preschool graduation for James and Micah, a trip out of town to look at tile and carpet for the areas under construction, and in the evening Michael had softball so it was Me+8 for the night our last day of school.  That resulted in a movie rental, popcorn and M&M's for all the kids while I sat on the couch and tried my hardest to make it through since I'd already promised a movie night even though I had a migraine!

And here... are the pictures that I've been SO bad about posting on the blog lately! (Though if you're on FaceBook, I have been uploading there as we go... sorry!)

Sunday's Playday in the Pools!

(Brianna)                                            (James)

 Emma and James having some "time away" from the pools while they worked out their difficulties :)

Micah, looking for trouble!

 Aleksa, letting the water SPLASH her! A big accomplishment there!

And the peanut, Lynae, posing for the camera

This is how Wesley spent the morning, because we didn't have anything for him to use to sit/lay in the kiddie pools :(.  He did enjoy the fan though!

And with that, we figured out how to purchase him a seat that he can (hopefully) use for a long time!  It is a hollow bath seat that the bottom fills with water.  Purchased on Amazon.com for just under $150... it is an expensive little chair, but the JOY in his face when he got to be IN the pool with the kids---
worth EVERY. PENNY.  This is Thursday night in the pool...

(Lynae, Aleksa, Micah, Emma, Brianna, Wesley)

(James, Micah, Lynae, Emma, Wesley)

(James...    ...Micah)

The "contraption" Wesley is in here we bought earlier, but this was his first time in it!  It's called a Head Float and is made for kids like Wes that don't have upper body support.  He LOVED it as you can tell in the second picture.  TOTAL MOVEMENT is allowed when he's in there!  He was flapping and just LAUGHING.  A great workout!  

Big-stuff Kristopher :).  I can see him looking at me the very same way when he's 16 (he's 8 now...)  :)

 One VERY HAPPY little Wesley!

And last, Friday's Preschool Graduation!

(Micah)                                                  (James)

Annikah's brain surgry is tomorrow

I'll back up a second first... This isn't my child :). This is the beautiful Bulgarian princess that Shelley and Robert Bedford adopted in December and I had the privilege of going with Shelley to bring home. This is the child who, upon learning that she had the disease that constricts blood vessels in the brain called Moya Moya, they were told she would need immediate surgery... Then they were told the she didn't necessarily need surgery at all... Then they got a second (and 6th and 7th!) opinion through their neuro surgeon conferencing with a bunch of adult and pediatric surgeons that deal with this condition at all stages of life and... Once again... They re recommended to go ahead and do surgery ASAP so that the risk of stroke or seizure was taken care of. God has already done miracles by allowing Annikah the compensation that her body has done to keep her healthy up to this point, however medical intervention is now recommended and the Bedford family is stepping forward in faith knowing that God is in control and believing tha His will is their heart's desire... To see their beautiful daughter lead a long and healthy life! Please be in prayer for Annikah and for Shelley and Robert along with the 6 siblings that Robert is holding down the fort with for the week. Annikah's first surgery is Tuesday, followed in a month by a second surgery on the other side of the brain. www.only1mom.com

Sorry for leaving you hanging...

Wesley was released from the hospital on Thursday afternoon about 430... Just in time for us to make it back home by 5:40 to drop Wesley off to Michael and pick up the two little girls along with Kristopher so we could go see the girls' end of the year program for their church group. Headed home after that and got everyone in bed then went to sleep for a much needed FULL night of sleep. Only somewhat interrupted by Wesley's needs since Michael got up with him most of the time. Friday seven kids and I headed down for a 40 minute drive to go pick up new glasses that are "unbreakable" flex frames for six of the kids. I was exhausted, Wesley was somewhat sore, but we all survived the trip and we now have everyone's glasses which is a benefit for sure :). That evening we all headed out to Michael's softball game for church league and had the ever so healthy McDonald's dinner at the ball field (our typical Friday night stop in... It just works...). Saturday started with horse therapy, however Wesley sat this one out at home, and I kept the other 4 kids that rode the previous week home with me as well. After lunch I took off for a solo trip to Sam's (last trip I overdid it by pushing a stroller and pulling a very full... Very heavy cart... This time I went alone!). Made it home from that and unloaded the van then we set out with all 8 littles in tow to go to Lowe's and look at bathroom vanities. Ours has some water damage and since the bathroom was torn up and new tile, etc is going in, it makes sense to go ahead and put in a new vanity now rather than waiting and having to make due later with any changes, paint, etc that is done. We found a few that will work but decided against purchasing one just yet (we have some time befor we need it, and are running out of storage space!). We got home in time for a quick and easy dinner, baths, and bedtime for the kids. Sunday started out rough with kids crying before we opened our eyes. I got up at 530 to deal with them and didn't get back to sleep even though the culprit did. At 7 there was another bout, this time fighting, so then I was really up for the day. Another day of struggles getting one specific child to dress and come out of her room with her clothes on properly... and a rushed breakfast which meant I ended up with a pop tart at some point. Then off to church where we were texted to go to different parts of the campus for different kids that couldn't seem to behave that morning. We kept Wesley with us since he was still in recovery mode from surgery, and Aleksa always sits in church with us, so when we got the text about the third child needing us to come, that was when the morning was done in (5 out of 8 weren't handling church well at that point) so it was time to go home. I had written off the idea of that day being Mother's Day well before that point in the morning. I hadn't expected anything wonderful and exciting, but that day turned in to a bad days from the first minute... Worse than a "normal bad Sunday" which for some reason we have on a pretty regular basis. It was just a bad day... Not a bad "Mother's Day". The day continued to plummet, and eventually I snuck away (hmm... Internally?) and went to the river and read a book for an hour, treated myself to a strawberry lemonade, and made my way back home. I had made shepherd's pie for dinner and Michael fed the kids and had started getting them in PJs when I got back. A sweet goodnight to our children and I did my third load of dishes for the day, got things ready for the Monday morning IEP meetings and finally went to bed. Monday got better :). I had a sitter coming early and Mike brought the three boys to school while Wesley and I ran to Publix to pick up muffins to share with the IEP team. We haven't trained any of our sitters on his pump yet and Wesley was still iffy on how he was feeling, so we decided to err on the side of caution and bring him along with me to the meetings. A two hours and twenty minutes later, we had two sets of evaluations for disability labels (ID-intellectual disabilities) for James and Micah along with new IEPs ready for us if we decide to enroll them in public school in the fall. They do know that we ae planning to homeschool the little boys along with the four current homeschoolers, though. As an aside, it was suggested to us that we go ahead and do the disability label testing for the boys simly for the idea that if we want to enroll the boys in the near future, that part is out of the way. In addition, we were counseled to do he testing and keep the results filed so that if any question about our homeschooling was to come up, we would have school based test results which show that our children all have disabilities that reflect a difference in their ability to learn. What I mean by that is that the FIRST responsibility we have is to do right by our children, and by homeschooling we ad doing just that. But second, we have to do right by those implementing the laws which regulate schooling and child protection. We will report to the district annually, and it likely will not reflect the amount of change that they expect to see in a year time for most of our children. Having school based test results a reflecting that the children have disabilities which impact their ability to I progress as a typical child might is beneficial to be able to produce if questioned. Stinks that we have to think that way, but this is a reality here... Especially with multiple disabled children. :). Last night Michael and I moved all the furniture around in our family room, preparing it so that the construction crew can break through the wall to make a new hallway entrance and so that the electrician can get to he things he needs to get to in order to get all the wiring set for everything. That includes moving both our homeschool cabinets (and purchasing and building another since we were already tight on space!), moving the couch, chairs, our big area rug... Might not sound like much but it took about an hour and a half to do it all with both of us working on it (ok, I helped with the building of the new cabinet only by reading directions from a chair... I was done in!). Now it's almost a week since Wesley's surgery and he has slept through the night TWICE (YAY!) and hasn't had anything but a morning dose and an evening dose of pain meds when we clean his incision area. The phenol and Botox are already kicking in and he is able o scratch the top of his head, extend his arms upright, lay RELAXED with his legs on the floor, and other things which are wonderful to see! He's back to his mischievous little self and finding new ways to make trouble, which is great to see :). His new corner chair (a Kaye product we purchased from Amazon for him) is working great, and he is receiving sits tube feelings primarily while playing in that chair. He's coming to the kitchen when we eat as a family and having part of whatever we are eating... However much he can handle without any pushing or fighting for him to eat. That is AWESOME. This morning we offered him a Pediasure prepped like he was receiving last week and I *thought* he was going to be excited about drinking by mouth (so far it's been mostly food and meds, with some liquids use to wash things down) but to my surprise, he drank about 3 oz and didn't want the rest... And that was after not eating all night. I am thankful for the feeding tube, and I'm pretty sure he is as well! Already his life has become less about "getting in calories" and more about enjoying playing, enjoying eating, and having energy to take part in family life more. Another busy yet productive week gone... More adventures ahead I'm sure! :) Just 8 more days of school!!

Mid morning update on Wesley

We started the day with him throwing p but father bing cleaned up, he smiled a bit, so that must have been necessary! His fever also went away after that! We then were waiting on feeds to start. First feed of 2 oz Pedialite went well! Now on second feed of 2 oz Pediasure. Then we wait on the nutritionist to make up a feeding plan, and for the home health company to deliver a pump. GI will be making rounds shortly and hopefully will give us the go ahead for discharge when those are complete. Not sure if they'll want to do a full feed (at lunch maybe?) or whether these trials are enough for us to go home. I'm thinking there's a teaching component that I'm supposed to show that I can do the entire feed alone start to finish, but... This isn't new to me ;). So we will just see if they bring it up or not! :) Wesley isn't in great spirits, but he's doing ok. He nt several hours (5?) on one dose of morphine, but will be changed to Tylenol w codeine now that he's on feeds. Not sure if they'll want to wait to make sure that it takes care of his pain management as well before discharge, which would mean several more hours as well. Not that I'm in a HUGE rush to get home, I just don't like to be in the hospital longer than necessary and I'm sure Wesley feels the same way! :)

Another Wesley update...

Though neither of us got much sleep last night... The night wasn't awful. The nurse was great at responding, which has been a difficulty in past stays, and we were able to stay on you of pain for the most part. Wes slept about an hour at a time from 12-5 then would wake for ten or twenty min, then go back to sleep for an hour then wake up in pain. I scooted him over and got in to the bed with him because he wouldn't let go of my arm and hand unless I told him why and how long (like to use the restroom and plug my phone in). he got maybe 4 hours of sleep but appears to be up for the time being. He also woke up twice trying to throw up, but of course its been over 30 hours since he ate so there's nothing there. We vented his tube, which had just a little air, but he was already resettled by then. Hopefully that will pass when he is able to get some Pedialite at 8. Feeding plan looks like 2 oz Pedialite at 8 then 2 oz Pediasure an hour or two later and progress from there... Hopefully he will tolerate it all well and he can be discharged! He has also been running a low grade fever consistently since surgery. 99/100... And sweating like he's running laps while I have a sweater on next to him. Not sure what that's about... Thanks for your continued prayers!

Wesley's surgery

Wesley did well. Botox and phenol injections were easy as expected. The doctor came out to let me know just a few minutes ago. Phenol takes effect immediately, so he can't be stretched at all for 3 days to avoid over stretching and make sure the muscle doesn't tear. Botox takes a little time to kick in but will start taking effect around then. The GI came out and said that the peg tube (feeding tube) went in well, no issues. His stomach still looks irritated, so they also rebiopsied for H. Pylori as well. If it is still positive they'll retreat with a different set of antibiotics. Our GI also commented that it was really neat to watch the Physical Rehab doctor do the Phenol injections! She used a device to find the nerve stream and block it then check it. Pretty cool... I wondered how they did that... Other than that, Wesley is in recovery now, hopefully will wake up and they'll bring me back in the next 20 min or so. He can't eat anything today, and tomorrow will start with Pedialite and then Pediasure. They'll set him up with a pump and nutritionist will set up a feeding plan for him to go home. Hoping to be home by early afternoon tomorrow if all goes well! Thank you all for praying and for your continued prayers!

Accomplishments of the pottying sort

Big news around here... potty accomplishments!!

LYNAE has been in panties at the house for several weeks now, and aside from a need for frequent reminders, she is really doing GREAT picking up toilet training! WOO HOO!  She still doesn't care so much if she wets, so there's still some ways to go.  But, progress is there and the puddles are minimal ;)

JAMES, though not near toilet trained, has his own accomplishment of being able to pull down his pants and pull-up and sit down on his little toilet by himself! This is a great 'independent step' since he could now effectively go in and go on his own when he figures out the urge to go. He also can take his pants and wet diaper completely OFF while sitting on the toilet (intentionally, not just 'playing' and kicking) as long as he doesn't have shoes on.  And, once a pull up is 'stretched' out for him, he can usually put it on and pull it up himself!  He's also putting his own shorts on too!  These may seem like random 'easy' things... and in fact they're easy for most kids.  But for James, they've been a struggle and we're so proud of his accomplishments!  We've been working HARD for this one!  Next is potty training... ;).  We've also been working on putting his own shoes on, which he still lacks the concentration for, but very soon I expect that when we loosen up his sandals that he'll be able to get his feet in to them on his own :)

EMMA, though also unaware for the most part that the toilet is a regular place she should go, is now holding her bladder throughout the night many nights, and going IN THE TOILET in the morning!  Just today, she took her shorts down, diaper off, and CLIMBED UP on the regular sized toilet independently!  Twice!  Of course it takes verbal prompting through each step, and if I'm in there she constantly tries to get me to do it... but... hey, I now know she CAN!  She also got herself off the toilet independently when I wasn't here on Friday, so today I tested the waters and just called her out of the bathroom.  Guess what?? She came!  Emma can put on a pull-up independently, however she generally leaks in them so wears regular diapers a majority of the time so still needs help.  She can take her shorts completely off (of her feet also), and put them on by herself as well.  She is learning to put her socks on but we're not quite there yet...  This week we've also been working on taking off her shoes and orthotics, which can be a little tricky.  She's been somewhat successful and most of all, she wants to continue trying, which is great :).

On a non-potty celebration, I brought cardboard boxes outside earlier and had Aleksa carry some as well.  Then we went inside and closed the door.  I asked her to bring another box outside and put it by the dumpster as well (yes, we have a dumpster... and a port-o-potty... for construction) and just said 'go'.  I had no idea what she'd do, but she opened the front door, walked out, put the box where the others were, and ran back in proud as can be!  Aleksa also helped me by emptying the dirty hamper in to the washing machine.  She did it well and picked up the pieces she dropped and put them in as well.  She put the laundry in unsupervised!  Unfortunately, when I asked her to go help me move it to the dryer, I discovered that she'd put a wet diaper in to the washer (unintentionally... it wasn't one of hers and she wouldn't know not to put it in), so we moved the clothes to the dryer while we searched for the culprit and emptied the 'goo' from the washer, then we moved it all back to the washer to re-run on sanitize cycle.  Now she is likely very confused as to how the laundry works :D

And the week begins

I admit, I've been counting down the days until the end of the school year!!  There are THREE WEEKS left, and though I don't dislike school, I LOVE summer!  Our kid's pools are out and ready to be filled with water (the water only lasts a week or so so we fill them as we are going to use them).  The pool is ready for swimming, the screens around the pool are ALMOST all finished being repaired, and there's a bunch of little people in our house that are excited about jumping in those water holes and making a splash!

Though we'll likely be in the pool this week and not wait for school to be out, we have a busy week this week as well.  Starting off with today to get the house in order, tomorrow James has a pulmonology appointment and Wesley has a neurology appointment.  Then Wednesday Wesley will go in for surgery including a g-tube placement, Botox injections, and Phenol nerve block injections.  He and I will spend about 36 hours in the hospital and hopefully be home by Thursday night as long as all goes as planned!

Thursday is Brianna and Lynae's last day of Kids' Adventure Days at our church!  This has been a great program for both of them this year and we are thankful that the girls are able to take part in this program :).  They have a closing program on Thursday evening which I'm *hoping* we will all be able to attend and watch them sing and dance.

Friday should be nice and low-key, with a church softball league game in the evening.

It's hard to believe it's already a week in to May when it seems like yesterday was February...  But, it's coming quickly!

Our home addition/renovations are coming along well too!  The outside structure is built and most of the framing work is done throughout the two bedrooms and new bathroom.  The concrete has been drilled out for the shower to slope down to the drain, and the "trenches" have been drilled up to put the plumbing in.  I *think* the new plumbing may even be laid (which would explain the horrible smell that evacuated us from our house on Friday when they were sealing off all the fittings) but I haven't been out to look at it since they finished that day due to the smell.

This week they will have the plumbing inspected then will pour the concrete to fill in the holes and I believe to shape the shower as well.  They were actually a day or so AHEAD of schedule last week, which is encouraging that the 9ish week prediction of time from start to finish *could* be attained.  But, this is construction, and we realize the likelihood of that really working is slim :).

Prayers are appreciated for Wesley's surgery on Wednesday and for the family as well.  Mike does great flying solo, but it's still a difficult task.  I'm not really looking forward to an overnight at the hospital at 6 months pregnant either, but I'm glad Wesley has the opportunity to have this done to improve his life!!

Dual Diagnosis: ADHD and Down Syndrome

Another day, another diagnosis...

Today Aleksa went to the neurologist (same doctor we saw yesterday, they just didn't want to do both girls as new patients in the same day).  She was diagnosed with ADHD which was apparent within 2 minutes of entering the exam room :).

And now, I've become "that parent."  The one that says YES, let me try a medication to help with my child's attention and hyperactivity.

Let me first say-- the hyperactivity we have learned to deal with.  Deal we do.  It's not that big of a deal, though it can drive us up the walls some days.  The attention deficit, however, is not only frustrating to US on a much deeper level, but is SEVERELY LIMITING Aleksa's daily life.

People used to believe that there was no such thing as a dual diagnosis of Down syndrome and ADHD, and that the hyperactive and lack of attention were simply "part of the characteristics of Ds".  Having 5 children with Ds, let me assure you that it is NOT apparent in every child with Ds!  Three of my five have no indications of ADHD.  Two... DO.  Very much so :).  The second is younger and not at a place where he has NO ability to concentrate, therefore I don't feel comfortable seeking a formal diagnosis or medication for him at this time.

For Aleksa, some of her history could very well have to do with her attention deficit and hyperactivity.  She spent years... literally YEARS (8 of them) without any type of boundaries that would teach her social appropriateness, or to teach her to be able to look at, focus on, or otherwise concentrate on ANYTHING.  No one ever tried to get her to... so how would she be able to at 9 1/2?

Aleksa has adapted VERY WELL from institutionalized life to family life.  There are still a LOT LOT LOT LOT of difficulties, and more hard days than 'good' ones.  She still has behaviors that top the charts of what we've dealt with in any of our children, and issues with attachment and bonding that are more than we've ever experienced before and show up at very random times... not every day.

I have and continue to be a strong advocate of "don't seek any behavioral (including ADHD, autism, PTSD, etc) diagnosis for your newly internationally adopted child until 12-18 months after the child arrives home."  SO MUCH CHANGES (in those first 12 months especially) that a child that is a total out of control monster like Aleksa was (said with much love, and intentional menace because she would melt down in to the little "Incredibles" baby that burst out in flames and look the devil himself when she saw food and wasn't able to take it for herself and eat it RIGHT THEN (including a child walking down the sidewalk with a lollipop or someone eating at a food court as we walked around at the mall) therefore making life VERY difficult... to grocery shop, go anywhere in public, or especially to eat out and have to wait for food while others around us were eating... did you follow all that rabbit chasing?) can change in to the little girl that has behavioral troubles but generally can conform to whatever we're doing and participate as a part of the family-- with firm boundaries.

After that last sentence, go ahead and ask yourself WHO has attention issues... It's ok :)

If you didn't follow... I strongly believe that the changes in an internationally adopted child initially are significant enough to avoid diagnosing or medically treating behavioral things for quite some time, and therefore we tried other means to deal with the behaviors that we saw in Aleksa.

Here are some of the things that we recognized in Aleksa at 16 months home which are what helped us make the decision to seek medical intervention:

• She can't look at anything for more than 1-2 seconds.
• Aleksa cannot put a puzzle piece in a puzzle because of being unable to concentrate long enough to find the right place, put the piece there, turn it and successfully get it in.
• Aleksa has not learned any letters of the alphabet to be able to consistently identify them even though she has been exposed to them daily for 16 months.  The same is true for numbers and the concept of counting.
• Given two pictures and being asked for one- using a word or sign- Aleksa cannot pick up the right picture card consistently because she cannot look at the picture cards and concentrate long enough to figure out what we're asking her for.
• Aleksa cannot sit in one place without very firm boundaries as to where she is to be.  (*some of this is related to her control and attention SEEKING behaviors as well!*)  
• She is in constant movement whether sitting or standing.  Her hands are always moving, feet moving.  She touches everyone and everything around her, and makes constant "uh, hm, huh, wha, uh, nuh" sounds as though she's talking... but she doesn't talk.  
• Aleksa has little or no "intentional planning" of movement.  She will go get something, put it down, get something else, put it somewhere else, pick up a crayon, put it back down, get another, draw one line, put it on the side, turn it over, snap it in half, get another crayon, throw it across the room, then stand up, get a book, open it, close it, flap it in her face (she copies Emma in this for a second or two) then  hand it to someone then try to get them to open it, then walk away, then pick up a piece of paper, then go to someone and murmur something (no speech...) then go put it in the trash can, then.....  It is a constant movement without anything meaningful or planned out.

The biggest reason for US to seek medical intervention/medication for Aleksa is that we want to see whether she will have a BETTER QUALITY OF LIFE by being able to control herself some more.  Basically, if a medication will help her to be able to focus on things better, then this could open up the world of LEARNING to her.  letters, numbers, shapes, objects... the list goes on!  It could possibly help her to focus enough to take in from her environment instead of being so hyperactive and inattentive that she can only draw little tidbits from it in 2 second pulses. 

The behavior... we deal with.  That has no bearing on us choosing medication at this time for Aleksa.  The goal is for her to be able to focus, to learn, and to take more control of HERSELF and her actions so that she can have more meaning in her life.  

So, today was 1/2 dose day (and no noticeable difference, I will say...) and tomorrow will be another 1/2 dose.  We will go to a full dose if we find that there are no adverse reactions to the medication after a few days.  We'll do this for a month then go back to the neurologist to evaluate the effects of the medication.  At the moment we're starting on a "classic" medication- a slow-release version of Adderall.

Our neurologist said today that children with Down syndrome and ADHD can have "true ADHD" which medications designed to help this will work well for.  However, children with "mental retardation" (yes, this is the term still...) in general can also have hyperactivity that's due to a different part of brain control which they haven't figured out how to control.  For those children, the traditional ADHD meds will not help, however stronger, more "psychiatric based" medications can re-center the child enough to help with the hyperactivity and attention issues where the ADHD meds may not.  Many of you may be familiar with Risperidone which is often prescribed for children with Ds and autism.  That is a different class of medication than the traditional ADHD medications, but can also be given to children with Ds and ADHD that do NOT have autism.

(*Let me take this moment to clarify that Emma will NOT be put on medications right now, because although she has Autism and Ds, she doesn't have behaviors which severely restrict her social, educational, or emotional life therefore we don't feel the need to seek that for her at this time*)

So... the adventure begins.  Two children with "official" dual diagnosis, and the entrance of the terms Autism and ADHD in to our daily lives.  Though... we've already been living with both, so there's not so much that changed except the titles... and the treatment!

Dual Diagnosis: Autism and Down syndrome: The Post-Institutionalized Child

Today was the day.  Not one we've been dreading or even earmarked in any special way on the calendar, but that's because our journey to an Autism diagnosis is much different from many other people's experiences.

Today, Emma received the official diagnosis of not "just" Down syndrome, but added Autism Spectrum Disorder,  Obsessive Compulsive tendencies, and Echolalia from a neurologist.

Yes, we knew it was there, knew the diagnosis that would be made, and were already dealing with the effects of these diagnosis...

No, it isn't what we hoped for our daughter, isn't something we wanted her to have to deal with, and isn't something "easy" as a family to deal with.

But deal we do :).

Backtracking...a look in to the early life of a post-institutionalized child

Emma came to us in 2008 at 5 years old.  She was 17 lbs, severely malnourished, neglected (with scars from lack of diaper changes to prove this...), and had the responses that signaled previous abuse.  Emma spent the first five years of her life inside of a crib in a room with three other cribs.  There were chair-height walls in the room and glass windows above that to the ceiling on the interior walls, and a door which remained closed.  It was in the front area of a special needs "infirmary" at an orphanage in an Eastern region of Ukraine.  There were two other rooms just like this one in the front room as well as a small open kitchen and another room which served as a lounge/office for the workers.  Then there was a hallway with 3 or 4 of these rooms off of the hall down one side, all looking the same with four cribs in each.  Micah was alone in the furthest room down the hall for his first 18 months.  Likely because he cried pitifully and constantly.

Emma was not held, made obvious by her total distaste for being held for long periods of time upon arrival in to her brand new "longed for forever family."  She wasn't able to hold the weight of her own head, much less put any weight on her arms, legs, or try to get in to a sitting posture.  She rolled over, side to side, and moved about in her confined space, about the size of a pack and play in the US.  She was treated with medication to help control her body's response to her heart, however she wasn't given the opportunity for the open heart surgery that she so desperately needed... she had a complete AV canal, which in the US is always repaired before age 1, and usually as soon as a child reaches 10 lbs.  Sooner if the child stops gaining weight or goes in to further heart failure before reaching that ideal weight (such as Brianna, who had hers at 5 months old weighing 8.5lbs).

Emma had other medical issues due to her heart not being surgically repaired.  She had multiple series of strokes or TIA's which caused lesions in the white matter of the brain on both sides.  Why? Because her heart was unrepaired and the way it worked allowed clots to form that then passed to the brain and caused strokes.  Emma's left side is now slightly weaker due to those strokes in her infancy and early life.  Another environmental factor that forever changed Emma's life.

Emma was fed broth through a bottle with a nipple cut so large that she didn't have to suck, the liquid poured out in to her mouth, all over her, and she wore as much as she ate.  She sat in soiled diapers, was fed about 8 ounces 4 times a day, and she laid there.  To entertain herself, Emma sucked on her hand.  Not just her fingers, no... she put all of her fingers, fully extended, down her throat and her entire hand except her thumb in as FAR as she could.  Yes, well past where a gag reflex should have been.  She would take her other hand and SHOVE her hand in deeper.

Emma dislocated her knees and ankles.  I'm sure it hurt, but it was a physical sensation, and she had to have SOME input.  She scratched at herself.  She rubbed her face until it was raw.  She rocked her entire head, neck, shoulders, and upper body while she chewed her hand up, back and forth, back and forth.  She had a crudely-buzzed haircut and a balding area along the widest places on her head which showed where the hair refused to grow because of the constant friction.

Emma didn't make any eye contact, didn't like to be held, smelled horribly and had the worst breath I'd ever smelled.  She'd never had her teeth brushed, she didn't care for myself or Michael very much, and she didn't tolerate the attention of Brianna or Kristopher for more than a few minutes at a time.

We had to learn to love Emma.  And she, well, she had to learn to like anything... and eventually to love.  It wasn't an easy process for either of us.  You know who it was easiest on?  Those we'd prepared for it to be the hardest for.  Kristopher and Brianna.  The unconditional love of CHILDREN.  They loved her no matter her smell, her bad attitude, her pushing them away.  Brianna, 2 years old and also with the diagnosis of Down syndrome, saw Emma as a sweet baby.  She would sit and suck her two fingers and rub Emma's head.  Kristopher would try to hold her, encourage her every step in her accomplishments, and admonish her when she wasn't behaving.

And then there's the screaming.  When Emma was done with something, or was uncomfortable in a new situation, or when she just had "something" bothering her... often unable to be distinguished by us... she would scream.  She would collapse in to sobs and then escalate to complete FITS.  There was nothing we could do except keep her safe, lay her down, and often put her in a crib and leave the room.  After all, that was her "comfortable place."  Not the arms of her mom and her dad.

It's hard for adults to bond with a "stinky, smelly, screaming, non-compliant child" that can't do anything for herself and doesn't want you within 5 feet of her.  It's hard for a child that's known nothing but self-reliance, abuse, neglect, an empty stomach, a bottom covered in sores, and didn't understand the idea of touch, holding, communicating, or eye contact to all of a sudden join in to a "regular American family" that wanted to love her, hold her, and bond with her.  For a 2 and 4 year old... it was a MUCH anticipated sister who their mom and dad traveled the world to bring home, and she was a TREASURE.

We have so much to learn from our children...

I know plenty of people that will read all that I just wrote, or experience something similar either in their travels or in their own adopted children's history and they feel nothing but anger.  Anger toward the people who "did this" to her isn't one of the things that comes to mind.  In Emma's situation, the people at the orphanage were not systematically starving Emma (though I know this does happen at other places).  They weren't denying her medical care that THEY could get for her.  They weren't leaving her be because they didn't like her.

The workers in the orphanage where Emma lived did what they knew how.  They treated the symptoms.  They left her alone when she was mad.  They fed her what they were told.  The diaper neglect... who knows.  The abuse, I don't know about that either.  But I know that the women WHOM WE MET and spent time with, and who I have SINCE BEEN BACK TO VISIT AND SHOWN PICTURES OF EMMA THEN were nothing but sympathetic to her, and truly cried tears of joy when we showed up the first day to visit with her after receiving her official referral and permission to do so.  They, of course, thought we were crazy, especially since she and Micah would make FOUR CHILDREN! (We laugh about that now... :) We had 6 kids when I went back to visit.  We were in process to adopt our 7th (Wesley) and had just found out Aleksa was still alive and well when I was there visiting them).  These women were simply doing their job, and turning off their hearts because they KNEW that if they allowed themselves to FEEL, they would be overwhelmed by the day to day of their work.

Societally, they had been brought to believe that the children with disabilities were "less than people" and not only worthless, but unable to understand, feel, etc.  In that society, the amount that the caretakers DID CARE was amazing.  And thankfully, education as well as the opening up of the closed world that is coming about through availability of the Internet is giving human rights a whole new look, especially for children and adults with special needs!  Change is slow, but it is coming...

Jumping ahead to today... The post-institutionalized child, 4 years home in a FAMILY 


Emma is a changed child.  The sparkle in her eyes, the HEALTH in her overall body, and the joy in her countenance are a complete 180 degree turn from the child we first met in Ukraine over 4 years ago!  Emma now understands English, which is of course helpful!  She had her heart repaired, her tonsils and adenoids removed, she had tubes placed in her ears, and she has received glasses to correct her vision.

Our little miss has had several years of therapies including OT, PT and speech therapy.  She's had homebound school services for a time, and then 2 1/2 years in the public school system in a specialized classroom for children with special needs.  She's also had 4 years of LOVE.  4 more siblings added to the family.  Four grandparents that have also learned to love and accept her.  A church nursery that has "learned to adapt" along the way to accommodate her in to children's programming.  Continuous oversight by physicians to see any underlying issues or preventative measures that may need to be cared for.  Emma has received orthotics to correct her foot pronation, intense therapy at home and through private therapy to learn to hold her head up, sit, weight bear through her legs, and even to re-train her brain what a reciprocal movement is.  Eventually to WALK at 8 1/2 years old!

More than anything, Emma has learned to ACCEPT AFFECTION!  She has a special place in her life for her Grandaddy... she will even leave a full plate of food to go hug him and demand she be held by him!  Her mom and dad... we've come a long way too!  We have learned not only to LIKE her, but to LOVE her unconditionally... to an extent that in the first year or two I continued to question whether we would be able to fully do or not.  Now, I know that love takes time.  But... it is absolutely a DECISION.  One worth EVERYTHING.

The Autism Diagnosis: What Autism looks like for THIS post-institutionalized child with Down syndrome

Why so specific?  Because every child is different.  Every story is unique.  Every child with autism, whether or not they have a dual diagnosis, will present differently than another.  This is our Emma, and what things we experience with her which are different than a child that may have JUST Down syndrome.

***Let me note, that several of the things I'm going to list below are also signs of OTHER things, and NOT Autism.  It's really the "whole package" which determines that it is Autism that Emma has, and not Down syndrome with either sensory processing disorder, or something similar to that.  Two of our other children have SEVERAL of the issues described below, but they don't have them ALL.  And we have no concerns that either of them has Autism, however they definitely do have other sensory difficulties :)***

Here's a list of the things which I wrote out while waiting at the doctor's office this morning which describe ways that Emma is "different" then most children, even those with Down syndrome.  They're in no specific order, just written down as I thought of them, and there are likely others that I'm missing...

• No initiated social interaction with peers
• Inappropriate responses to children- hitting, pushing, throwing things
• Self-injury: used to bite hands, put hands in mouth to gag area, and still scratches herself when uncomfortable and pops joints in and out
• Little or no imaginative play: will mimic rocking a baby and patting, but on her own she hits, puts a book over the doll's head and covers the head and torso with a blanket.  She sits dolls up and bangs their heads against walls, and cannot stand to have clothes stay on the doll.
• Obsessively overturns furniture: chairs, kids' picnic table, small trampoline, stools, kid's shopping carts, etc.
• Flaps books, papers, plates, frisbee.  She prefers flat round objects like toy plates. She puts them against her lips to do this often times.
• Chews anything soft and puts them in to her mouth and down her throat even.  Stuffed animal appendages, stuffed doll hands and feet, stray socks, pillowcase and pillow corners, sheets and blankets, etc.
• Very little meaningful communication: lots of (repeated, constantly) sounds and will mimic "Emma" or "Mama".  Can show signs for many words (baby, self, some alphabet letters, food words, animals, colors, mom, dad, etc.- probably 30-50) but rarely initiates using signs for useful communication. 
• Doesn't answer questions- repeats a part of what's asked: for instance "do you want more" she replies "mmm" and signs more.  A second later (even before receiving more) "are you all done?" she replies "ahh" and signs all done and begins to leave.
• Refuses many food textures: deli meats, fruits such as banana and grapes, most "gooey" solids.
• Doesn't follow directions outside of her routine or with multiple steps.
• Craves firm touch, spinning, brushing, loud music right at the ear, etc.
• Laughs when others cry
• Often doesn't respond to pain at all
• Is easily upset in new situations, unfamiliar surroundings, and new people.
• Behaviorally goes from one extreme to another, especially in new or stressful situations.  One minute clicking joints, crying uncontrollably... next minute uncontrollable laughter.
• Doesn't understand social appropriateness: belching/gas passing is ABUNDANT when she's uncomfortable, especially.  Also blows her nose with no tissues but won't blow in to a tissue, etc.
• Not toilet trained at 9 years old.  Can hold urine, but doesn't associate it with the toilet.  Will sometimes go in the toilet if timed well, but isn't anywhere near consistent with it.
• Throws everything in her path when trying to get somewhere (especially when scooting instead of walking)
• Affection is very much on her terms: high 5's, hugs, holding hands, etc is ONLY when she is initiating or accepting of it.  If she isn't, she's adamant that she doesn't want the touch or attention.  She will do this with adults, however with children she almost always pushes them away.  She may accept one minute, and the next minute refuse any attention or affection.
• Lack of reciprocated responses: Emma will occasionally respond "hi" or "goodnight", usually after prompting.  She will often say "bye" in uncomfortable situations, presumably to escape sooner :).

There is no greater gift, than to be able to raise a child entrusted to us by God, and to love her, learn from her, and to care for her. 

In other places, she'd be described as broken, damaged, retarded, useless, unworthy, incapable.  

In our eyes she is perfect, precious, lovable, a sister, daughter, friend, a wonderful gift, a precious life. 

James 1:27 "Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world."

I'm reminded it's been a very long time since I've updated!

We are all doing pretty good t the time being! Construction is well under way! Our four homeschoolers and 2 yr old are all begging for more school and activities and I'm enjoying it just as much as they are! We are getting schedules and such worked out with our therapy center to start a clump of therapies for all of the kids starting next month, which is a wonderful blessing! The baby is growing well, all concerns of difficulties have been released, and... Our next little one is a GIRL! more later along with pictures... :)

All the medical updates!

The last few weeks have been MEDICAL weeks!  We go through seasons at our house where we will have an appointment here-- one there-- then, we have 19 in two weeks! :).  Thankfully since many of them are the same specialists for different children, we can combine appointments and get things accomplished much quicker and easier than we might if we were headed to many DIFFERENT specialists all the time :)

Yesterday I took Wesley to the GI doctor and he's still sitting right around the same weight.  He gained a little, lost a little.  He isn't interested in the Pediasure, so we switch flavors for a time, then he gets tired of those, so we mix and match, and he gets tired of that, so we do blended, and he gets tired of that, and...  It's been a constant struggle to find something that he'll take!  He doesn't LIKE that he has to drink so much.  He wants to EAT.  But he gets about 6-8 bites of food in and he's tired of chewing and swallowing, and he's DONE.  So... drink he must to get calories, which means he HAS TO drink before he gets to have food... it's just a battle.  One we're done fighting.  Wesley is being scheduled for a g-tube placement in the next few weeks.  The goal is for him to be HAPPY and FULL both at the same time... which quite frankly just doesn't happen very often right now.  We can do overnight feeds and daytime feeds between meals.  Then, when we all sit down at the table, he can have whatever he wants of what we're having and not HAVE to have something else first.  I hope and pray this will be a step in the right direction for him.  As he grows, his condition doesn't "get easier" like many kids with Down syndrome that learn to eat later on, etc.  His is a muscular issue with chewing and swallowing, and one that is sortof something we've known was coming for the last year but hoped he might just all of a sudden turn around and just improve based on his other major accomplishments and overcoming so much in other areas.  For now, we schedule surgery.

Brianna saw the opthalmologist on Friday due to squinting to see the TV with her glasses on, and she was taking them off regularly when playing quietly with small toys.  Her glasses script has been LESSENED which is great :)!  We also took the other 5 kids with us (I had a sitter come too... and Lynae was along for the ride) and the 6 that wear glasses all were fitted for new FLEXIBLE frames!  YAY!  We are so blessed that these frames were approved to be covered for the kids with no out of pocket expense (we offered to pay in to each pair since they don't generally approve these but the perosn working with us to get glasses felt strongly that the kids would benefit from them since their glasses do tend to be broken pretty often).  They will all have the SAME glasses frames, in 3 different colors and 3 different sizes, and varying temple lengths in addition to that, but... they will all have a good pair of glasses! :)

Staying on the eye topic, Micah, Emma, and Wesley all saw opthalmology a couple of weeks ago and all received new scripts as well (Aleksa and James are on every 2 years to see opthalmology). Wesley's script increased, Emma's changed slightly, and Micah's is lessening a little as well.  Emma had a correction for astigmatism added to her script.  Those three changes have already been made in the glasses we buy as an 'extra' pair from WalMart (free replacements for a year!!) and they are all wearing them well.  Thankful we'll have the flex frames as their main pair pretty soon, though!

Brianna, James, and Emma went to cardiology last Thursday.  Brianna sounds good, and they didn't do an echo this time.  She still has a mild leak in her valve from the last 'stitch' in her open heart surgery, but she will be seen again in 6 months and likely moved back to annual appointments at that time.  Emma has a moderate leak that may require an additional surgery in the future, but it's not being contemplated right now.  She'll continue on every 6 months for a while. They did an echo and it's "ok" for now.  James had an echo to check on everything for him and he... IS RELEASED! :)  James had an ASD and PDA that spontaneously closed before we even got him, and he had a history of spontaneous pulmonary hypertension, so we continued to monitor him for two years with our cardiologist to make sure we weren't overlooking anything from his past when he changed providers.  Thankfully, his PH levels look great on echo and he has no other symptoms to indicate otherwise (he still sees pulminology though!), his heart is all healed up and looks great, and this was the LAST echo that he should need! :)  I love that kind of news!  Hoping and praying that Lynae will be released at her next appointment, and Micah as well!  Then we'll be down to cardio care only for our two with major repairs.  What a blessed day that will be!

Last Wednesday Brianna and James went to endocrinology due to unusual thyroid levels for Brianna and hypothyroid for James.  Both of their bloodwork (including their annual screenings due to their diagnosis of ds) came back NORMAL!  That means James stays on his low-dose med and Brianna can continue to be unmedicated!

On Tuesday last week Brianna, James, and Micah went to the dentist, and I shared a bit about that experience earlier on. :)  None of them have cavities, and all will go back in 6 months for a cleaning. Yay!

Monday (yes, that's EVERY day last week!) I had an OB follow-up and things are going well.  My level 2 ultrasound and meeting with the perinatologist is this Friday.  Maybe we'll get a peek at the baby's gender then?? :)

The previous week on Thursday Aleksa saw the ENT.  We will be switching ENTs.  She failed both hearing tests (OAE and Tymp) in both ears then passed just the OAE in one ear on a second attempt.  Both her tubes are out (one had been for several weeks and the other was already out at 2 weeks after) and she got them just about 8 weeks ago. The ENT's solution was "wait and see" if her hearing improves, or put more tubes in. My solution is to get my 9 1/2 yr old to hear, now, without tubes since that was unsuccessful (and actually caused 2 ear infections, which she'd had none of prior, just uninfected fluid).  There are devices to bypass the outer and middle ear which seem much more appropriate than "wait and see" when dealing with a child that has likely never heard 'normally' in her life and is having a very difficult time trying to figure out life without adequate hearing in a totally different type of situation (family vs. mental institution).  She's been home for 16 months now, and this ENT has put off doing anything but "wait and see" and the one set of tubes (after a year).  Time for change...

And finally... that Monday Aleksa and Emma went to the dentist for their first visits.  Aleksa wasn't happy about it but survived.  Emma did great, surprisingly!  Still needed some attention, but didn't fuss or wiggle too much.  Both have some cavities (no surprise) and we are waiting for them to have sedated procedures scheduled.  Both of them also have teeth that haven't fallen out despite their adult tooth coming in behind them (this is pretty common for kids with Ds) so those baby teeth will be pulled as well.

And then our week will come to a close on Friday with our 3 weeks of doctor appointments with a total of 23 doctor's appointments!  Tomorrow are Kristopher and Emma's well visits, and Friday my Level 2 ultrasound. Then 3 weeks with absolutely NO scheduled appointments (of course we're waiting on 3 sedated procedures to be scheduled...).  It comes in waves!

Today's the day!!

After about 7 weeks of waiting... today the ACTUAL construction begins!  In just a little while, our project manager will be here along with a crew to level out the ground, dig footers, and then pour the concrete slab!

Looking forward to seeing this project get kicked off, and even more so looking forward to seeing it finished in a few (short??) months! :)

One more day, one more accomplishment!

Today we OFFICIALLY started on our home construction!!  Our permit applications were delayed a week initially because of a miscommunication between the permit folks and our project manager... And they ended up having to get our septic system certified which took that week.  After that, our permits were applied for with a "5-7 day wait"... and 5 weeks later we FINALLY got them!!

Today the permits were posted, the air conditioner units were relocated (they were in the way of the new construction), water lines were marked out so that the slab can be poured and our main house water can be moved once the new construction is in (it, too, is where the new construction will be), and I believe the gas lines may have been set up so they can pour the new slab on Monday.

While they were starting that project, I took James and Brianna to the endocrinologist along with the other 4 kids that are at home during the day.  They all behaved well, they're used to this office and the way they do things so the routine isn't anything new.  Both kids got a full YAY on their blood panels including screenings for secondary autoimmune issues like diabetes, celiac, etc.  That's always great to hear!

James is already on a thyroid med, but Brianna's is just being monitored, so James' dosage stays the same, and Brianna avoids meds even longer.

Another plus to the day, our nurse coordinator for the kids' specialists came down and talked to me before the doctor was in and 1- got Brianna in to the opthalmologist on FRIDAY this week... instead of NOVEMBER.  She's squinting but wasn't due to see opthal for another year and the next available appointment (until this cancellation opened one up) was August... which we can't do... then NOVEMBER!  Yay for Friday!  2- she said she'll schedule James' new pulmonology appt with a doctor at that clinic instead of me needing to take over scheduling and going to a different office, etc. which means one less thing for me to have to do!!  3- she understood our wanting to switch ENT and will move ALL our kiddos to a different group that are PEDIATRIC ENT.  We'll go with that and see how it goes.

All of that was accomplished along with 2 kids seeing the dr within 40 min of our appointment time. YAY!!

We now have air conditioning again... after 8:30-4:30 work being done to get those going, and on MONDAY we will have a slab poured for the new area.  Praying we don't have rain around that time so we don't have further delays!

Our new construction will add two rooms that will be used as bedrooms (one won't have a closet, though) and we'll be converting one current bedroom in to a fully handicap-accessible bathroom with roll-in shower, hand bars on everything, roll under sink, etc.  So net gain is one bedroom and one bathroom, since we're losing a bedroom in it as well.  It will be GREAT for Wesley and Emma to have a bathroom with more access and that will allow more independence both now and as they both get bigger!

Tomorrow is cardiology x3.  Fun stuff.

And some days, it all just works out...

Thankfully, today was one of those day!

We all got up and going this morning about 6:30, and by 7:20 Michael left to bring Kristopher to school and Lynae with him to the church until KAD (our mom's morning out program) started.  By 8:30 I had all the other kids ready to go and was, myself, ready to get moving.  We had two sitters show up... one to stay at the house with Emma and Wesley, and the other to go with me to the dentist with me +4.

After leaving the basics of the day with our sitter at home, we hit the road before 9am... in time to grab breakfast for ME and get on the road to downtown Orlando.  We made it to the dentist sans difficulty and got in and registered.  Then, I got to start up the 4 pages of paperwork for each of the 3 kids that were about to see the dentist for the first time!  After doing this twice last week for Aleksa and Emma, it wasn't so difficult to fill out all the forms for Brianna, James, and Micah today.  I was VERY glad, already, that I'd been able to have an extra 2 hands come with me so each of the kids got a trip to the restroom before we were called back... after being in the car for an hour :).

As I finished the paperwork, we were called to the back to a room with 3 dentist chairs in it.  Hmm... ok, which ONE did they want us in??  The nurse says "one in each, are we ready?" And I must have looked at her like she's crazy as I said, "I don't think that's going to work..."  The doctor came in just then... the same doctor (different nurse) that was with me last week with Aleksa and Emma, and she said for us to all go to one end and asked who I wanted to have go first.

Brianna is the easiest going of the three, and listens pretty well, so she was the best first candidate up.  She did great!!  I stood nearby and she either listened... or just told them 'no' then listened when they insisted :).  I think the nurses may have thought they were all going to be that easy after her.

Then the same nurse that was setting up directions earlier suggesting they all go at once, pointed at James and said "Let's do Micah next."  I replied with "Ok, and started getting Micah up (since he IS who I wanted to go next!).  She said, "no, the 5 year old."  I replied with "they're both 5!"  Micah went next :).

Micah cried through the entire thing, starting with putting the brakes on when I took him from my friend's lap and put him in the chair.  He pursed his lips together as much as possible and used his strong little tongue to get the dentist as far away as possible... but in general he still did ok.  I sat at the foot of the chair... after the same nurse as earlier (there were two in the room...) protested that SHE would hold on to Micah because I was... um... (she didn't want to say pregnant??).  I waited until the doctor was there then said "I'll just sit by his feet if that's ok?" and she replied with "Just like with the girls last week?"  "Yes" "Ok" And I sat by his feet, held on to his hands, and off we went.  He struggled, pulled away, but in the end his teeth were cleaned and there weren't any problems :).

Next was James.  If you can picture trying to brush a neurotic cat's teeth... you're probably close to picturing what the experience was like for James.

I first put him in the chair and sat by his feet, then I sat him 'criss cross' and put one hand on his ankles.  Then I folded his arms and held his wrists.  Very gently, of course!  They started cleaning his teeth... and we were shocked at how great he did!  Then... they turned on the suction machine and my grip got tighter as he attempted to dislocate every single joint (he can do this... it's not like he was hurting himself...) to get FREE.  So... in an effort to not have him climb the walls so often, they opted not to use the suction machine much :D.  This was a good idea.  Even still, he would all the sudden flip out and try to stand in the chair and lean backward over the side of it all at once on several occasions and only my grip on him kept him from flying away.

We then had 2 nurses along with the dentist in there.  One holding his head, the dentist trying to work, and the second nurse holding and handing over the equipment.  And me, doing what mommies do, holding on to him and trying to keep him from going overboard with this experience :).  In reality, he actually did GREAT since he calmed down between 'episodes'.  I thought that was great!!

Before we left, the doctor made sure to mark in the boys' chart that I was to absolutely go back with them in the future.  I don't understand why most dentists have issues with parents going back with their kids.  There's really NO WAY I'd send my nonverbal kids to go in to a room where they may or may not be restrained by strangers in order for them to be able to have their teeth cleaned.  No way, no how.  Brianna... maybe.  She can talk, and she sits well, and she really wouldn't be any fuss.  The other 5 w/ Ds and CP? No way!

We were DONE at the dentist in just 90 minutes! The same amount of time it took last week for Aleksa and Emma to be finished as well. YAY!  We hit the road, got a super non-healthy lunch at McDonald's (well, chicken anyway... not SO unhealthy unless you watch those pink paste things on FaceBook...) then got back on the road by 11:45 to get home.

We got home early, in time for me to save Michael a trip home from the church to bring Lynae home from KAD, so I swung by home, picked up Kristopher's karate clothes, dropped Micah off with our one sitter so he could start on a nap, dropped off our sitter that went with me so she could have some time before she had to get to the college for her afternoon class, and headed up to the church.  On my way I realized that Brianna had gone to karate last week as well so I called Mike to see if he was planning to have her do karate this week as well.  He was, so she stayed at the church for the afternoon, Lynae came home, Mike didn't have to leave work, and when he picked Kris up after school, he wasn't going to have to come home at that time since both the little boys were home with me already (their class naps at 12, so I don't send them to prek after 11 or 11:30 if they're out in the mornings!).

Our sitter at home hung out for a while until her ride made it, and I then spent the afternoon working on a scholarship application for Kris next year.

There are enough days that things all go CRAZY, and nothing works out right... so it's always REALLY nice when days like today happen when, though busy, they all WORK!

So thankful for a day when things go right, and for the help of both of our sitters that helped it all to work out just right today too!!

Today started out...

With a load of dishes (thanks Mike!), 3 loads of laundry, 8 kids up and dressed and fed breakfast, meds given out, teeth brushed, hair brushed, three boys off to school, a shower for myself, a friend coming to babysit and our house fairy coming, all before 9am. And then... The day changed.

Then I remembered that Emma may need antibiotics before her dental cleaning, and I rushed around trying to print off the new(2007) standards showing she in no way was in the window of people needing them... Just in case the dentist wanted to see them. Then of course it wouldn't print at all, so I messed with the printer. Then it ran out of paper during the test print it was running. All three ink lights were also on. Then I got the document to print, but somehow the information about congenital heart defects was blank. Seriously... Blank.

I figured this must be a mistake and tried printing to a .pdf instead of to the printer. And it did it again. That entire area was simply blank. Next I copied and pasted to a Word document and from there was able to print. How strange!

Aleksa, Emma, and I went to the car at 9:10, when I was planning to leave at 8:50 or so for a 10am appointment in downtown Orlando. As I said goodbye I realized my purse had been left in the big van... Which Mike drove that day. We walked out to the car with the realization that I'd have to drive to the church before leaving town, and got to the van only to realize that the vest I use for Emma in the mini van was not there. Thankfully we have Radian carseats that have high weight capacities (she's over the 40 lb limit for most car seats) and with a little adjusting she was in and the three of us were off.

We stopped by the church, grabbed my purse, programmed my phone gps with our destination and we were off. I even called the dentist to let them know we were a bit behind and without even asking our names they waived it off as "fine, not a big deal". Maybe... they are really used to downtown traffic. Or maybe, I was one of the only morning appointments without a Spanish accent :).

We arrived about 10 minutes late but the wait wasn't awful, despite the 21 people standing in the waiting room which had park benches lining the walls which would seat only 12 people! Emma went first, since I knew her anxiety would just grow and grow if she had to wait for Aleksa to go. She did really well, though it was definitely a struggle for her to tolerate. She was really good, though :). We have known her teeth were bad, however we have been trying to get her in to the dentist for over two years without it working. Today was the day! Emma has 3 cavities and has two baby teeth that aren't coming out, however her adult teeth are already in behind them. She is having a sedated procedure scheduled to take care of those things.

Aleksa did ok... Though even though she understands more (as far as her ability to understand more complex thoughts... Not her ability to understand words or to be obedient...), she still behaved worse. Let's just say I'm not surprised. I held her mouth open and she whined and fussed through it all, but it was done. She has one cavity and one baby tooth that needs to be pulled-- same as Emma-- because the adult tooth is in behind it. She, too, is being scheduled for the procedure to be sedated. The other option was a full restraint and local anesthesia in the office. With neither of my girls would do well with at ALL, especially considering their pasts!

Michael came home at lunch time to relieve Chris from childcare duties and eat with the kids while the girls and I drove home for a quiet afternoon at the house with five of the kids. Michael also brought the boys home--very thankful that he can do that!!-- and we had a good afternoon with 8 littles and myself as well.

Since Michael had a meeting tonight, he didn't come home between work and the meeting so he could make up some of is missed time during the day. That left dinner to me, which was just fine. Dinner was made and served about 5:15, then baths for the 5 that have places to be in the morning, except for a detour where James and I had a battle of the wills over whether or not he would drink more than 1/2 oz for dinner. In the end, he had roughly 8 oz in his stomach, therefore I believe it's safe to say that I won that battle. He stopped his lovely angry fit and answered with "yes ma'am" before heading off for the second torturous experience of the night... Bath time.

Between his dinner and his bath, meds were done and teeth brushed, Kristopher got his shower, and the kids all headed off in their respective directions for bed. Kristopher read to the girls for 10 minutes before getting his lunch ready for tomorrow and getting himself ready for bed, and after the torture session of one of the fastest baths ever, James took a nice long diaper-clad cuddle on my chest before getting his pjs on and heading off to bed himself. With lots of hugs and kisses and I love you's thrown back to me with sweet little doe-eyes. Even if I am the evil mommy that makes him eat...

Wesley was last to be talked in to eating the rest of his dinner, but with him it's a pointless battle most days. He got pjs and off to bed with Kristopher by 7:45, just in time for me to go sit in the girls' room and ask them continuously to stop giggling, talking, getting out of bed, and better yet... Jumping on their beds!

Mike got home about then, and relax time set in :). For some reason the girls all recognized that when Daddy was home they'd best just go to sleep... ;)

Today's long day will be followed by a restful Tuesday! One where five kids are off to their activities in the morning, I set up our meal menu for the month and maybe even grocery shop, and we have no plans at all for the day :)

Thankful that this week we have no appointments on Tuesday and Wednesday, that I have our new sitter coming on Wednesday for a bit just so I can get things done around the house, and on Friday all the kids AND MIKE have off for Good Friday! We also have a sitter coming a few hours on Friday so Mike can get out and just to prepare for a Holiday weekend! Looking forward to a great week this week and a fun weekend as well!

And... I'm glad Monday is over with!!! :)