H-E-L-L

"H-E-L-L, I love to spell!" This was the song Kristopher was singing when I picked him up from his private CHRISTIAN pre-k this afternoon. I was on the cell phone with Mike when I noticed what he was saying and told him that's not really a good song. He continued until I told him that what he was spelling was a bad word and he needed to figure out a different way to sing or not sing it at all. He kept telling me it's from Super Why, the tv show, but I have a hard time believing that he got the words right! Mike suggested maybe it's S-P-E-L-L instead of H-E-L-L but Kristopher's sure it's not. The song has been banned in our house until he can figure out what the real words are! LOL

Emma starts school TODAY!

Her homebound teacher will be here in an hour :) Emma will have Ms. K will come 2 days a week for an hour each time to work with Emma. Now to find the paperwork I'm supposed to have ready for her! (oops!)

One Year Ago Today

We had our homestudy visit! Our homestudy was done in just one visit but they were at the house for something like 5 hours. They had dinner with us then stayed as we put the kids down to bed and for more hours after that. I remember being so nervous! It ended up being an enjoyable evening, though, and we were approved that very night :)

As I look around my house tonight (ignoring the mess) I realize just how much our home itself has changed in the past year. When you walk in the front door there's a set of 9 cubbies. The top three are filled with lunchboxes, diaper bags, and school bags. The bottom 6 each have a bin with an initial on it and is a place for that person's extra set of clothes for the diaper bag or their blanket for the car in the winter. There are 6 coat hangers on the wall sporting lightweight jackets for everyone. Photos on the walls show our family of 6 and young pictures of the 4 of us as well. Our kitchen now has a table in it whereas before it used to be in the glass-enclosed porch. There's a new highchair in the kitchen and a different occupant to the other highchair. Brianna moved up to the booster now and Kristopher sits like a big guy at the table. The family room has transformed and now has storage under the 'bar' including a cabinet for diapers and a dresser with bibs, dishtowels (for cleaning up spit-up mostly) and another cabinet with paper products. The changing table found its way out of the baby room and into the family room along with the hamper and diaper pail. A child's chair or two and a handful of toys can always be found in the family room too. The boys' room now has bunkbeds and a crib instead of the one twin bed and a new double-wide dresser in the closet. The girls' room now has two cribs and a daybed in place of the one crib and also has another dresser beside the first. Our guest room closet has become a 'hanging room' where 4 weekly clothes organizers hang and clothes are sorted and put in these each week to ease the morning rush. The guest bathroom sports a baby tub and bumbo seat because that shower's the easiest to use for the little ones' baths. The glass-enclosed porch aka Florida Room aka Playroom is now... solely a play room! It has toys on one end for the little ones and toys on the other end that are Kristopher's (but still safe if the little ones get them). There's a new gliding chair from a garage sale out there especially for grandmas but great for Mommy too. There are two hammock swings which the kids spend hours swinging and spinning in. A tiny TV sports the morning cartoons for Kristopher on the weekends. And finally the master bedroom, yes, it's transformed too. It holds a crib where Emma's been sleeping for the past 2 months.

Our house has transformed into a home where three infant/toddlers and one preschooler live. The babies might have "taken over" in areas that we've had child-free before, but I love it even more!

I do wonder... what would the social workers think if they walked through my doors today? Besides the bottles in the sink and the toys across the floor here and there... I hope they'd find it a loving environment and would approve us to have these little ones again.

Product Review: Baby Trend Diaper Champ

Like many first time moms I enjoyed going to the baby store and registering for things for our son when we were a few months along in the pregnancy back in 2003.  One of the things I knew everyone needed was a diaper pail.  The new ones that trap in the stink and individually wrap each diaper seemed like a good idea.  I'd used one occasionally at other people's houses and they really did trap a lot of odor in (you knew this when you changed the bag and opened the container WHEW!).  I used that diaper pail for three years (through Kristopher's 2 years of diapers, the first year of Brianna's diapers, and during those few months where I had a 'foster' son that brought the count up to THREE in diapers at my house... wow, and I thought it was a lot those 5 weeks! LOL).  We used that until one day someone opened the flip-top lid to stick a diaper in and the plastic hinge broke.  From then on it required 2 hands to remove the lid, shove the diaper down past the little clips, spin the top of the pail, then replace the top back on it.  This device was called a diaper genie.  Little did I know at the time, it was much more difficult than it needed to be.  It also required that we buy special cartridges with tubes of bags inside of them.  Several dollars per cartridge and I had to cut the bag to remove it, tie it off, then tie an end in the new one each time I changed the pail.  It was a hassle.

For a year I went without any diaper pail as I just had Brianna in diapers and soon after her 1st birthday she began having BM's on the toilet a majority of the time.  I took the bathroom trash out regularly and although it was far from ideal, we made it work.   When I came home from Ukraine with two more children in diapers and the knowledge that I'd not only be changing MANY diapers per day, but I would have children in diapers for a LONG TIME, I decided it was time for another diaper pail.  This time I bought a Diaper Champ.  I have to admit it was a bit of a 'risk buy' because I really hadn't seen any reviews or anything but I decided I'd give it a try for a bit and if I didn't love it, I'd go back and buy the new model (but still the same design and need for cartridges) of the pail I used to have.

I was PLEASANTLY surprised!  A box of tall kitchen bags was all I needed to make this pail work and it seals out a majority of the smell!  The way it works is that in the center there is a hinge.  It opens there and you fit in a bag then press down a 'ring' which holds the bag in place (simple to do).  Then you place a diaper in the top opening and flip the handle over to the other side.  This dumps the diaper into the bag below.  A neat extra thing is that the bottom of the 'basket' in the top there slides up and down.  So if the diaper doesn't go out on its own, you give the 'new bottom' a nudge and slide it down which dumps the diaper.  Then you put the next diaper in the top again and flip it the other direction.  I'm not sure I explained that so great, but that's the best I can do!

The good things?

• Seals out most diaper smells
• Uses regular bags- ANY bag (even wal-mart grocery bags!) which saves lots of $$$ in the long run
• Easy to use with one hand
• Easy to empty
• Easy to put a new bag in
• Easy to clean (no hidden crevices)
• No parts to break
• If you're a CLOTH DIAPER MOMMA you can use this pail!  All the diapers will be together in one bag, not separated in annoying individually wrapped hot-dog containers and it would be simple to toss a load in the washer straight from here! (maybe even to use a cloth sack but that might be taking it a step far LOL)

The down side?

• A little bit of a smell can be detected when the 'sliding bottom' goes with each diaper.  I've only noticed it when there is a VERY strong scent inside the can and it's really time to be emptied anyway, but still it is there occasionally
• When you pull the bag out if you're not standing on the sides of it (there are spots to step on) then the full diaper bag suctions inside and can be hard to get out.  (if you use the foot holds on the can it's not too bad).

I'm glad we bought this, saved some $ and time, and I'd highly recommend it to others.  Would I buy it again? Looks like I won't have to because this one's going to last!

Nick Vujicic

An Interview at 5 Minutes for Special Needs!

You've seen me mention the site before, but a few weeks ago I was contacted and asked if I would do an interview with the site. You know me, I don't turn down a chance to share my sweet kids! Today they ran the interview :) Click over to 5 Minutes for Special Needs to see how it went and leave a comment over there if you get to read it!

150 Car Loads

That's how many people got turned away from the Nick Vujicic event tonight. There's two more services, one tomorrow at 10am and one tomorrow night at 6pm.

There were over 2,000 people in attendance tonight in addition to the 150 cars turned away. We arrived 30 minutes early and were in the second overflow of three. COME EARLY IF YOU WANT TO SEE NICK! My parents were turned away and I told them to come up at 4:45 tomorrow and bring a book :) Not a bad idea if you're not toting 4 kids with you :)

Warning! MAJOR BRAGGING

Tonight we got to the church at 5:30 and were VERY glad to find a handicapped parking spot right up front after driving 3/4 of a mile past cars parked on either side of the road. Can you see me and my crew walking a mile to church and then sitting through some of it? SOME would be the key word, and only a LITTLE bit of that some...

Ok, so my unabashed bragging... MY CHILDREN SAT FOR 2 HOURS AND 15 MINUTES!!! ALL FOUR OF THEM! WITH ME, BY MYSELF!

Reality is I'd brought bottles, cups, and snacks and I parked myself in an overflow room in a corner where the kids could get down in a 2' square space and Mike did come in about 20 minutes before the end and took Micah with him while he was working on things... but seriously, my children were SO WONDERFUL tonight I'm just so proud of them!!!!!

Brunch with Nick

This morning Nick Vujicic from Life Without Limbs ministry spoke at a brunch for families of children with special needs. It ended up being for parents and caregivers as well as children and adults with special needs, but it was really a great thing! We enjoyed it very much and a few different points really stood out to me.

One thing he referenced in John Chapter 9 is the man that was born blind. The people asked Jesus "who sinned? This man or his parents?" and Jesus answered "neither sinned, he was born this way so that his life could be a testimony of God." Yes, that's paraphrased big time :) Click HERE for the NIV version :) What Nick said was that his parents and himself all questioned why God had made him the way he was. After all, he has no arms and no legs, just one toe which he calls his little "chicken drumstick" and it is on a footlike appendage, but no legs, arms, hands... He saw from that story that his disability was meant to enable him to spread the word and be an evangelist, not to disable him or cause him to suffer.

He pointed out that though he doesn't have mental disabilities (ok, so maybe not the term we prefer, but we all know what he means...) he still believes the same for any disability. People are not sent afflictions to disable them, but to be teachers, to share testimonies, etc. and each person is built in God's image- whole and perfect in His sight.

Another part that struck me is his trip to the orphanages in Romania where he said he visited with orphans that were laying in thier cribs. They were given up 3 years ago and had never left that one room. It was 85 or 90 degrees outside and there wasn't even a window cracked for fear that the children would 'catch a draft'. The medical care they were providing was just not up to par with what the children needed and even daily care was much lacking. Wow, that was all SO very familiar to me. After all, it wasn't 3 but 5 years that Emma laid in that room. And Micah for 18 months. After he spoke he allowed questions and one person asked how it could be that these children are discarded? How can this society still exist that doesn't accept people simply because they're different?

I had the opportunity as we left to briefly share about our children to Nick and I'm glad to have another opportunity to meet with him in a small group at a lunch on Sunday that's just for the small team that brought him in to town and their spouses. Emma will be with us and I hope to introduce him to her. His voice is a strong one and is an additional voice of advocacy for the orphans around the world that are discarded because they're different. And what a powerful one he has!

I look forward to hearing him speak tonight and possibly again tomorrow then lunch with him and the team tomorrow. If you're local and can come by, he's speaking at Park Avenue Baptist Church at 6pm tonight and then 10am Sunday (and maybe... there might be a Sun. Ni ght meeting, they're going to decide that based on the turnout tonight and whether they end up having to turn people away, I'll post if they do!).

Now I'm off to get my kids ready for church. We're going to be there nice and early so we can get in :)

Thanks

Thanks everyone that has commented, e-mailed, and called me. We are doing fine with Emma's new 'probable' diagnosis and it's not really any shock to us. Though the difference between thinking that might be it and having evidence is different, I will admit. Regardless we are fine and so is she and we're still just loving every minute of her.

Also, to all who commented on the picture in that last post... I put it in sepia tones because of her yellowish features compared to now because that was taken the night before her open heart surgery laying on the bed giggling away (when she should have been going to sleep!) at the Ronald McDonald House :) But yes, her smile is vibrant and alive... but even before her surgery she had a gleam in her eye!

Tomorrow morning Mike and I are going to a brunch and will meet Nick from Life Without Limbs speak to parents and caregivers of children with special needs. My new understanding is that it's not just parents, but also possibly adults with special needs that will be attending. This is very different from what I originally was told as I was under the impression it was going to be "straight talk" and that's why they asked no children to attend (but they left out adults in that part...). Either way it will be a great morning and I look forward to meeting other parents and hearing Nick speak.

Tomorrow evening he is speaking at Park Avenue Baptist Church at 6pm and Sunday morning at 10am. These are community-wide events co-sponsored by Indian River City United Methodist Church. If you're anywhere nearby please come hear him speak! Overflow rooms are available and we're expecting a very full house!

Emma's new alphabet

Today Emma had a new alphabet soup added to her already growing list... CP.

I called the cardiac surgeon to request (again) a copy of the MRI results from the brain scan Emma had done after her T&A back in June. We knew that there was 'something' but that it wasn't active and honestly were more worried about the surgery and getting her through that than the idea of brain damage or what that might mean for her.

I received the report in just a few minutes via e-mail and read through it. Though I couldn't make heads or tails of a lot of it, I understood a good portion and googled a few pieces as well. I put in a call to our pediatrician and offered to fax the paperwork to her when I picked up the kids at the church. In talking to the ped when she called me later on she suggested referral to the neurologist for follow up. I asked her thoughts on Cerebral Palsy and she said, it's brain damage in the white matter and this is what the report shows so yes, it's "likely" CP.

So, unofficially, we've been given a diagnosis of CP. It will probably be months before Emma sees the neurologist and gets any formal diagnosis where we're able to start figuring out why she has the brain damage or whether it's a condition that needs to be monitored that caused it.

There was some good news squeezed in though... the report clearly states that she does NOT have AAI or AOI which are the instabilities of the neck that we've been concerned about! And, she does NOT have a tethered cord which was another thing we were questioning to rule out.

The cause of the CP could be trauma from birth, could be TIA's ('mini strokes') caused by high blood pressure, could be full blown strokes, could be any number of things... and I have no idea how they would attempt find out how or why it happened... or if it might happen again.

She's still the same sweetheart we brought home to love forever, and we now know that the challenges she faces are not all just a result of her environment and nutrition in the orphanage. It means more obstacles for her to overcome in life, but knowing is a good thing.

Emma's alphabet letters are DS, AVSD or CAVC, PH, PFO, PDA, FTT, and now... CP

Down syndrome, AtrioVentricular Septal Defect (or Complete AV Canal), pulmonary hypertension, Patent Foramen Ovale (heart), Patent Ductus Arteriosis (heart), Failure To Thrive... Cerebral Palsy...

God has blessed us abundantly and we know this is another perfect piece of Emma that didn't have a name before today. Now that it has a name we can help her to overcome the difficulties it might bring her way. But He's never let us down before and we know He's holding us up even now.

Q&A

Susan said... ...do you think perhaps the increased blood flow after her successful surgery is helping brain function, as well as the rest of her?? She seems to be increasing in alertness and awareness of things around her since her surgery.
Since Emma was so interested in the card, I bet she'd love some colorful board books. She handles her bottle so well - she could probably learn to turn pages easily! Needless to say, Micah and Brianna would love them too, or I'm not a retired children's librarian ;-)

 

I have no idea if the blood flow has affected her in a literal sense, but in the sense of having more energy for other things, I'd say definitely!  yes  As for the books... oh, I wish I took a picture of our "book room" as the kids call it before cleaned it up yesterday.  Let's just say there's no lack of books at this house! LOL  The kids all love them :)  Emma will look at books on the floor but in her chair she throws them.  It's more fun :) Brianna has taken to bringing books in the car and will flip through them the entire drive.  LOVE IT!

 

McKenna said... I popped over here from my online course....your site is just so much more fun than "Theories of Personality..." :)

 

Ah... psych major?  Loved those classes LOL  I minored in psychology

 

narretto said... ...Also, William has a lump in the middle of his chest and the cardio says it is just the way the surgeons "put him together" (sounds funny ) after surgery...it just how the rib cage is aligned, I will post a pic of it and let me know if it is like E's, I can't tell how much her's sticks out.

Here's some better pic... at least a little better...

I'm not even sure that those show it well, but you can see it's raised anyway.

 

michelle said... do you know if this is what the place emma was going to end up in is like?

The place my kids would have gone is a little better in some ways, but children are still restrained, tied down, and are left in their own filth, are not held, not calmed, and really, I can't think of anything that really makes it "better" than those places except there is a little but of relief efforts going on there.  It used to be BAD but seems to have improved.  Still not a life for Emma as I'm sure they wouldn't have continued her 5x/day medicine routine and her heart failure wouldn't have allowed her to last more than a few weeks maximum...

 

dr_bristow said... Wow, what a neat article...very touching!
Not sure if you've already seen this: http://www.membersproject.com/project/view/H1LEJ0
You don't have to be an American Express card holder to sign up and vote to nominate Reese's Rainbow for the grant...

 

You must be a new reader to my blog?  Either way, I'm very glad you're spreading the word,about the AmEx project.  The button on the top right corner of my blog goes right to that link as well :)  SPREAD THE WORD, WE MADE THE TOP 25!~  More about that coming soon... :)

 

Kathy said... Are your newest kids afraid of the grocery store? I wonder, if they are, if it's because the temperature is kept low, and there's no carpet, lot's of "hall ways", reminding them vaguely of a place not so nice from their past?

I think you're right, there's probably something that sparks it from the past.  It's just Emma, and it's just sometimes.  Usually if she's already having a rough day she's easily triggered.

 

Alyssa said... Oh, what I would give to only pay $38 a month for gas!! :)

Ah, yes, but you have to realize that this house is not actually using ANY gas.  It's empty!  Noone there!  $38 seems like a lot to just have the gas company read the meter that doesn't move! LOL

 

Annie said... Your babies are getting so big! Unrelated to this post, but my little brother (he's 8) was looking over my shoulder at some of the pics on your site and I was telling him how Emma had heart surgery. He saw the most recent pictures of how Emma's scar is healing and he said "oh, is that how she got that big scratch on her chest?" I thought it was great that after only a few weeks, when he saw it all he thought of it was that it is a scratch.

LOVE it! LOL

 

Lori & Family said... Okay,Will she not qualify for SS disability? That would help with the medicaid issue. I have a friedn who is a wiz at this stuff and she would love to walk you through some of it if you would like. We call her the IEP queen. Let me know and I will hook you up with her

Still waiting on SS#'s (applied a while ago) so no way to know if she does or not.  Looks like our medicaid application (#3!) was this time denied instead of timing out.  Ah... this is fun, isn't it??

 

 

Thank you to everyone who commented on the IEP post!  WOW, I'm surprised you all read it! LOL  I will explain Florida and the Pain we have here with qualifying for ST in a later post.  Today I got a referral from the ped for private ST and PT (we'll hold off on OT until we get going with these two right away).

 

Chris said... I did read all of this, do I get brownie points(I'll take the brownie instead), but am a bit confused. Are the kids going to Ap.. next year, or a school closer to your house, Or is Ap.... the school closer to your house?

:) Ap... is the closest school which has appropriate placements for my kids.  It will be where they ALL go next year.  OP is where at least Brianna will go in January.

 

 

Shari said... Wow! Thank you for mentioning those things because Curtis's IEP is next week. I wonder if they'll need those things? Again, you rock! :o)

If he's registering for school for the first time, then YES, they will :)

Karyn Reed said... Wow! My day is busy with four children who don't require any special care. I don't have your kind of energy. Do you drink a lot of coffee?

 

Coke throughout the day keeps a girl going.  Oh, and don't forget chocolate.  An additional essential part of the day. Sugar, caffeine, it's all good! LOL

 

Jaimie said... is it just me or does it look like someones getting a little (itty bitty) belly??? maybe??? she looks really good Meredith :)

Well... since you mentioned it... if you knew the kind of gas she was putting off for the next little while after that bath I think you'd be amazed at how much that little belly went down pretty quickly :)) LOL

Karyn Reed said... She has one of the sweetest smiles ever. How could anyone not fall in love?

 

I wonder this myself sometimes :)

 

For all of you that commented on my questions about Emma's hand, thank you for the input and advice.  One commenter asked whether she bears weight differently on each leg.  She doesn't bear any weight at all.  More on this issue later.  We have a current brain MRI from before her open heart. When I finally got a pic of her doing it yesterday I realized that we hadn't received the copy of the MRI report and put that on the To Do list for today.  I'll post again in a bit with what our ped and I discussed today.  Thank you all for your input and "Mommy expertise!"

Beauty and Bath Time-- and a Q at the end...

There are so many little things I love about each of my children.  Tonight I got Emma ready for a bath after wearing her nighttime bottle and decided it was a great opportunity in her little shy mood she was trying to play off to take a few pictures.

 

I'm gonna pretend to be shy...  do you see this though?  That's where God fixed my heart.

I'm holding on tight, never letting go.  And I'll send you some kisses too!

Then I think I'll throw some spit kisses your way and take a rest... on my FOOT.

It really is a good head rest when you're tired.  Or I can fold these little things up tight.

But there's always room for smiles and giggles even if I'm tired!

 

Mom makes me into a burrito so she can wash my hair.  Otherwise I throw the cup and make a mess.

No tub baths for a bit still, but I kind of like that baby in the mirror getting her bath!

Mom spins me around at the end to wash my legs then I LAUGH while she scrubs my back!

Ah... That was exhausting!

Now for my question...

Emma has done this position with her hand a lot lately.  We're not sure whether she did it before her heart surgery or not, but it's only her left hand.  And when she does it, her arm and hand are very rigid.  I can put my finger on her hand and she'll grab my finger in that same rigid position, in fact the one she's holding my hand above is why I ended up with her hand.  The first here was when I was getting her ready for a bath, the second is (obviously since it's all wet LOL) is when I just finished washing her hair.

Usually it's when she's agitated a little, sometimes when she's just laying and playing.  Along the same lines... We noticed a lot of stuff she does with her RIGHT foot, and not a whole lot with her left.  I hadn't noticed it a whole lot but when a friend was visiting earlier in the week she asked if Emma uses her left foot.  Huh, hadn't noticed.  Anyway, does anyone have a child that does this with their arm, and if so- do you know the cause?  Thanks in advance...

Kristopher just told us

That although he was eating a pear with his dinner, "another pair is the same of something, like two things the same are a pair." It sometimes catches us by surprise what he knows and understands.

Then again, a few minutes later he insisted that a crack opened up in the middle of the living room and a green fire monster came out of it. So maybe the Pear Pair thing is his imagination too???

:)

AHA!

Not the greatest AHA moment, but one none-the-less. I called my bank today and put stop payments on the 4 months worth of checks that I've sent to the gas company that haven't been cashed. My account was credited. Then I called the gas company after my AHA moment. I dug up the paper bill which says I owe an extravagant amount of money for an empty house including 4 late payment charges and realized that online banking has its faults. You see, I don't generally even LOOK at the paper bills. Instead I look at my account online and go over to my bank page and hit 'send'. The downfall would be that the gas company made notification in the PAPER bill and not the ONLINE bill that their billing address had been changed. Yeah, not a good thing. They'd changed the address on their site, but hadn't put out any "hey stupid look" signs or e-mails (since this was part of my registration to view my account online) to say that I should change the address I send payments to. Since online bill pay is so easy with my bank I just type in the amount due for each bill and at the end hit the button and it automatically is sent to the address that I have on file. So not one or two months of not being applied to my account, but 4 months now (and in the midst of life I have NO IDEA why I hadn't noticed something like a different PO BOX...)

Anyway, after talking to a man that doesn't speak English and him asking me why I didn't change my billing address with them if it's a problem (um... it wasn't MY BILLING address that changed... it was THEIRS) he finally transferred me to an 'escalation manager'. Wow, didn't know we'd escalated! I was simply asking that the late charges be removed since there wasn't notification online that the address of their company had changed. She finally understood what I was talking about and said there was a slip in the paper bill and I explained that I don't use a paper bill to pay, I use their online system and have for years without a problem. Unfortunately, she says she could only remove one late payment fee, so $5 less it is... I guess that's something though. Anyway, I now have the account changed in my banking and thankfully I should only have to ever pay ONE MORE BILL to this company because it's servicing our other house which we should close on by the end of the month. $123.60 has now been sent to the NEW billing address, including $15 in late payment fees.

Now to call back Medicaid. I got my first formal denial today. We have too many assets. Hmm...

I'm happy to say

That my children slept unusually late this morning and at 7:15 Brianna was brought to my room for snuggles. Mike got K up and showered and out the door for school and turned on cartoons for Bria and I to watch in bed. Emma (in our room) soon woke up as well and then the girls played in the crib together while listening to Spinoza sing. Around 8:15 Brianna decided to stand in the crib (the mattress is raised) so we all transplanted to he family room. It's 8:45 and Micah's still sleeping. I've done all of NOTHING this morning including feeding anyone breakfast or getting anyone dressed (of course clean diapers weren't negotiable). I needed a day like this :) In an hour we're going to meet my mom at the library for story time and we pick Kristopher up at 12:25. That's ALL our plans outside the house for the day... which hopefully means we can tackle the things around the house that need to get done. Laundry, playroom, and making baby food would be the biggies :)

Have a blessed Wednesday!

A day in the life...

I've been asked several times lately what my days look like. Many are pretty relaxed. Some are busy. Here's a glimpse of my day today... starting last night...

At 7pm Mike and I plus 4 piled out of the van after I grocery shopped and Mike wandered Wal-Mart with the kids for about 90 minutes. I had my first experience pushing the new stroller while pulling the cart and it went surprisingly well (K had to go to the bathroom).

We got home, put the refrigerator stuff away and got pj's on. Then we got bottles in 2, medicine in 2, and were getting the kiddos all off to bed.

Around 8:15 I got a call from a friend from high school. She and another friend stopped by soon after and I hadn't seen one in 6 months and the other in probably almost 2 years. Well, that long since we'd had a real conversation anyway. We visited for an hour or so (all the kids did go to bed except E) and then said goodbye.

After our company I started in on a project I knew I wouldn't get done that night but needed to start anyway. I made up 34 half-jars of babyfood and a few full jars with bananas, rice cereal, whole wheat cereal, pears, and grapes. Yum the grapes were great! That took me about an hour and I put all the veggies and apples on hold because I didn't have the energy to cook it all that night.

I got on the computer after that and responded to e-mails, blogged quickly about E's IEP, and started researching something that I needed to put an order in for the next day. I got talking to someone about it as well which is fun but it does definitely take a little longer :)

Then of course since I was online a few more conversations got going and eventually I put it all down and tried to go to sleep. That was around 11:30... I think...

With that I got back up to finish getting ready for the next day. I made up 3 bottles for Micah- 1 for the morning and 2 to go to KAD with him- and 2 bottles for Emma. I made Brianna's milk cup and added the Carnation instant breakfast powder. I packed a lunch for Kristopher and one for Brianna. Then I went in search of clean clothes for all four kids, which proves to be difficult right now since I have a pile on the guest bed and a load in the dryer and I really should take the time to put them both away... Really I should...

About 12:30 I grabbed my Beverly Lewis novel "The Sacrifice", turned off all the lights and fans in the house, bumped the AC a little warmer for the night, locked the doors, closed the baby gates, started the O2 compressor for Emma and fit on her oxygen cannula, and curled up on the couch in the living room right outside my bedroom door to get lost for just a minute (almost literally) in a book before I climbed in bed... And then I got up to check one more place that Kristopher might have left his school folder that was missing. It wasn't there. I laid down again and thought of one more place... though it wasn't there either, I did see it on the island in the kitchen (under other papers) on my way back through. Finally I wound down enough to not remember the words I was reading and went off to bed at abour 12:55.

At 6:45 Mike woke me up and asked if I wanted a shower. Of course, but no. I went back to sleep for 5 minutes then realized that Kristopher did and his chance was about to leave. I went and woke Kristopher up and sent him to Mike for his shower. Then I grabbed Micah out of bed and Brianna heard us up as well. With one on each hip we all came out to the family room. Since I'd laid out clothes I changed diapers and clothes, complete with putting their shoes on pretty quickly. Then they went to their highchairs. I'd started Micah's bottle to warm a little before getting him up and I pulled Brianna's cup from the refrigerator. Between dressing Micah and Brianna I stuck two frozen cinnamon waffles in the toaster to wait for Kristopher to be ready to toast them and I put a third one down for Brianna.

Once the two little ones were eating I went to retrieve Emma from her bed, turn off her O2 compressor, and get her dressed and going. I started her bottle to warm and went to change her. By the time I was finished with Emma and she was in her highchair eating Micah had finished his bottle and flung it- still hungry- to the ground. I had another half-bottle made and stuck it in the warmer while I left to go get dressed myself.

I passed Kristopher in the living room and he went to get his clothes to get dressed. Mike was also on his way out and he pressed down Kristopher's waffles and gave Micah the second bottle then sat down for breakfast himself.

When I was finished dressing I added ice packs to the kids' lunch boxes, put diapers in the diaper bags, made sure that Kristopher's lunch mde it to his school bag, and started shuttling kids out the door to the car in the garage. Mike helped load up the van and I send Kristopher through the house to turn off the many lights that had been left on throughout the morning and grab his school bag. I had a baby, two lunch boxes and two diaper bags and took my camel self out to the car.

Pulling out a few minutes late, I knew we were cutting it close for Kristopher's school. We pulled in to the church and after I'd gotten the triple stroller out, unfolded it and gotten 3 kids out of the car the bell rang and the National Anthem started to play. We were late. I got Brianna out, grabbed lunches, diaper bags, and of course all the kids... and we went to bring Kristopher to the classroom. By the way, I'm thankful for my handicapped permit because although there's LOTS of parking that's closer than the handicapped spots, those are big enough that I can have the stroller open and not have to worry that someone's going to hit it when they don't see it as they fly into a parking spot, also late for school.

We got K to his room while they said the pledge and mentioned to the teacher's aide that there's a note in his bag and I'd be there to get him about 5 minutes early today. Then I met the little ones' PT in the hallway as she looked around for Micah and I handed him off then got his lunchbox and diaper bag out to put in his classroom. I asked her a quick question about the next step in getting a wheelchair for Emma then went on my way so the little one crying for Mommy (not one of mine) would be able to calm down.

Brianna was next and she happily held my hand and walked into the classroom. Her lunch box has a pocket on the outside that's perfect for three diapers and a little "freebie" wipes pack so she can travel lite. Then we buzzed out the door, just Emma and I, and back to load up the van. Since I'd grabbed E's medicine on my way out the door I gave them to her when she was buckled back in then packed up the stroller, flipped it back into the trunk, and headed off to my parents' house.

Mom met me in the driveway, gave me a bag with some coupons and few jars of babyfood that she still had at her house. We hopped in our prospective cars and I followed her up to her rental house that she's fixing up. We went in and poked around... they've redone a LOT! Drywall is down all over the place, there's all new cabinets being stained and poly'd a bathroom pulled out and even a wall from the shower which had termites prior and will be replaced. The house is of course all torn up (the reason I was waiting until it was just Emma and I to go see it and not all 4 kids!) but it will really look nice when it's all finished. Leave it to Mom and Dad to not just do a project, but do it BIG.

After that my mom stayed to work on the house and Emma and I went to Wal-Mart to get a few things that I'd forgotten last night. Brianna's pretty much switched to the twin bed (YAY!) so we needed a second bedrail so that they'll cover the entire length of the side of the bed and she can't fall out (again). I also forgot bottle nipples and napkins so we got those too. Emma sat in the cart for the first time (forgot to grab my single stroller) and did great other than wanting to lay on my arm the entire time :) She was very happy about the idea though! I also splurged on a toy for Emma which is a xylophone but instead of a hammer there's these wheels at the base of each bar which you roll and they bump the bar to make the sound. Emma can roll them really well and loves the music they make!

We left Wal-Mart and made it home in time to finish researching my purchase that I was making today and to check with the appropriate people that it was ok (the item wasn't for me). Then I grabbed a quick drink, warmed Emma's other bottle, and put her in the car-bottle and all- as we drove back up to the church.

Mike joined me for just a minute then rushed off to fix another piece of the media puzzle that he was working on for a big rally this coming week- Thursday, Saturday, and Sunday a man named Nick with the Life Without Limbs ministry will be speaking at our church (and there's a brunch for parents of children with special needs on Saturday morning- e-mail me if you want details, RSVP req'd!). I went to the cafe and ordered lunch for us both then sat down with my friend Rachel to eat, Emma on my lap. Mike did eventually come and soon it was time to get the kids from their classrooms and reload the car.

I left Emma with Mike and went to the nursery to get Micah and Brianna's bags. I left Micah for just a minute but brought Brianna to the car to deposit all the bags and art projects. They'd both had good days! With one on each hip we went to Kristopher's classroom and pulled him out just a few minutes early. I changed Micah's diaper in the car as I phoned Mike to ask him to bring Emma out. We all piled in and headed home. It was 12:16 and it's an 8 or 10 minute drive home.

I pulled into the driveway and saw Mike's parents were waiting there for us. Leaving E in the car and the car running (it's HOT here), his mom stayed with Emma while his dad and I ran the little ones, stuck them in bed, and I ran to put long pants on so I could at least look a little presentable since I never did get that shower I was hoping for this morning.

Back at the car at 12:30 I was doing pretty good! We picked Mike up at the church then continued north and arrived at the school at 1:00. Unloading Emma and a single stroller (which I had gotten 2 doors down before I remembered and returned to grab), we made it into the school office, signed in, and were led to the IEP room.

At 2:45 we came back out! It really was a decent meeting though, and I dropped Mike back off at the church and took Emma home. The boys were up and playing at home and after telling Mike's mom about the meeting she headed off as well. I relaxed for a few then got Brianna up and going because it was getting late. Brianna hadn't eaten much so she was ready for something to eat and Emma and Micah agreed. Everyone had a snack then got down and played for a little bit while I made Kristopher some Mac'n Cheese for supper. He ate, they played, and I blogged then finally attempted to make my online purchase. Of course... the website was down! I worked on a project with Andrea for RR for a bit and between a chat with her online I got all the kids dressed, teeth brushed, medicines down, bottles in, stories read, and kids in bed. All but Emma... my night owl... by 8:15.

I finally DID make that purchase, which was a gift for someone and I'm so glad it's on its way! Then I again sat down to read my e-mails from the remainder of the day and finally to write up this post. All the while I'm watching the Republican Convention and I'm chatting with Mike (who came home around 9pm). It's almost 11pm and I'm ready to crash. It's been a long day. No, they're not all like this, but it's not all that unsual either. But before I go to bed... I need to at least grab out some clothes for Kristopher so we're not scrambling for him to get ready for school in the morning. And make his lunch. And sign the papers in his school folder. But tomorrow he's the only one going to school, so the three little ones and I will attempt to rectify the laundry situation... and the playroom... in the morning :)

Oh, and did I mention

That it apparently gives you brownie points when you bring your shot records, form from your last physical, and your child's birth certificate (alone with a translation if necessary) to the meeting so that when you ask "what do you need from me?" and they tell you those things, you can take them out of your folder and hand them over on the spot? And... When you make a list of things you're working on at home, it's an awesome feeling to go down your own list and "check off" the things that they also saw as goals. Plus a copy of that went to the homebound teacher too :) Doing your homework can go a long way :)

Yay for a good IEP team!

I was very pleased by the IEP team, the meeting itself, and the plan for Miss Emma. A few things that aren't wonderful, but you take the bad with the good. And overall it is very good. This is going to be long, don't worry, no test at the end :)

First off, we met at a school that is about 25 minutes from our house. It wasn't a fun drive. It's not one I'd like to do every day. But according to Emma's scores on the paperwork from her evaluation, it's the only school that would have an appropriate facility and classroom to deal with Emma's needs. This classroom is also called the Profoundly Mentally Handicapped room.

When I first was told this, I thought, ok, I guess I'll have my work cut out for me! After all, I really didn't (don't) feel like this is Emma's status. In Florida, though they're trying to change the terminology, they have three "classifications" of special ed students. The 'top' level is EMH or Educable Mentally Handicapped. Then in the middle is TMH or Trainable Mentally Handicapped. Last is PMH or Profoundly Mentally Handicapped. These terms seem to be on their way out from some articles I've read, but they are still used none-the-less as they're commonly used and are something that's been in place for many years.

I went into the meeting with two, maybe three goals. The first was to have her set up as a pre-k status so that if she does go to the classroom in the winter (right now we're looking at January or March) then she'd be with 3-4 yr olds, not 5-7 yr olds. She's tiny, she's young, she needs to be with kids a little younger than herself that are doing just a little more than she is doing. The second goal I had was to make sure that she did NOT have the label PMH attached to her IEP. I feel like she's made such HUGE gains in less than 6 months along with 3 surgeries and I don't want her to have to get rid of a label later on. The third was to find out if there was any way possible to get her appropriate schooling done at a closer school.

I do believe all three were accomplished, to some extent, and I am pleased with the end result!

First off, as a little piece of advice to any parents coming up behind me, if at all possible, bring your child with you to the IEP! It's so much easier for the people that are sitting around the table to help you make a plan for your child if they can see him or her, hear the child, watch them play, etc. As long as you can still function and do the IEP with your child there of course. Mike was the baby-tamer and I was the one with a goal in mind :)

It just so happened that one of the important people, um... well, the one that CALLED the meeting, had written down the wrong time and was about 40 minutes late. Though this might have been a bad thing sitting around waiting with a table full of people and a small child, it ended up being perfect. In the silence of the room after introductions I asked if I could share a little about Emma while we waited. PERFECT.

I shared her history, a little about her medical side of things, and a little more about the difference in her in the past 6 months. I also had the perfect opening to say this: "Although a child that's 5 yrs old and comes into this room like Emma might be said to be "this way" their entire life, Emma has never had any opportunities. It's not the usual situation where every therapy possible has been given and she hasn't improved. It's just the opposite and I think we'll all be surprised at what changes she makes once in a school and therapy environment."

One of the people that sat in on the meeting introduced herself as the school psychologist and said she doesn't generally sit in on the younger kids' meetings, but she was there from the last meeting, and everyone else sat down, and, well, she didn't get up LOL. So though she was quiet a lot of the meeting, she's the one that voiced very clearly that Emma would NOT be considered PMH. The PMH teacher also chimed in and said that the major drawback to her classroom as placement is she seems that Emma needs to be surrounded with language and she wouldn't be in her room. There's very little language and little or no interaction between the different kids in that room. She didn't feel that would be a good placement for Emma.

So, the current status is that Emma is considered Pre-K, homebound, and we'll hear from her teacher within a week or so and she'll get 2 hours/week of home teaching.

The down side is that that's ALL she'll get. No therapies. She doesn't qualify for speech right now which is a post in and of itself, but I am happy to hear that they had an SLP write up language goals for her that will be worked on with the teacher. Also, she needs a release for a PT and OT eval and those will happen in 6-9 weeks. Then after that she can start receiving those services if she qualifies. We hope that at that time she'll be qualified for speech as well and will start all three along with the 2 hours of teaching each week. Not bad... in the long run :)

In the mean time, they stressed over and over again that we need to get some medical therapies going- private ST, OT, and PT because she'll really benefit from those immediately, even tho she can't get them through school and even when she does, school won't be able to work on everything that the private therapies do. The downside to that... I believe private therapies charge me a copay per session and if we don't get Medicaid to kick in, I'm not sure how that'll work. Regardless, it's a path to pursue and see what we can do.

Wow, this is really long! I'll be amazed if anyone actually read this far... you'll have to leave me a comment and tell me how awesome you are!!! :)

Ok, so we got pre-k instead of kindy, we got no PMH label, and... the last thing was schools. Right now this school is the ONLY one with openings. This is what we were told anyway. So regardless of which school is closest and has services that will serve Emma (and in January Brianna too), this school is where they should go because the class sizes are reasonable and they won't be in overcrouded rooms as their first school experiences. I kindof get this, though I'm not really excited about the distance. The good thing is that next year they'll be automatically placed at the school closest to us because they're already "in the system" and have a priority for our closest school. This means that we likely can also get Kristopher in that school even though it's out of area for us (our 'home school' doesn't offer ex ed services). And... Micah will be turning 3 just a month after school starts next year and all FOUR kids should be in the same school. Two in the 3 yr old PreK, two in Kindy :) :)

Ok, I think that's all for now. I'm pleased at Emma's probable placement scenario for the winter and I'm ok with the steps to get her therapies through the school system right now. And I'm very pleased that it sounds like though this will be a bit of a rough year, next year will likely prove much easier and I REALLY LIKE the school they will be at... that's right down the road from the church... and where I did my student teaching... A LOT :)

Tuesday's the day...

Emma's IEP meeting is at 1:00. That's where we'll determine her placement and services for the school year. I have paperwork requesting homebound services until the end of the year and our pediatrician said she'd like to extend it to the end of Flu season at that time. So this is to set up who will provide her services, what she will receive, and set up a homebound teacher as well. This is all pretty new to me, though I've been in IEP meetings before. Never this type of thing and never on the side of a parent.

I'm going prepared with the goals that I am currently working on and I hope that our final plan is agreeable to what is the optimal for Emma. The biggest concerns I have right now are the school they'd have her attending if she was in a classroom (almost 25 minutes away and don't have to worry about that for a while!) and that I've heard that 'they' want to classify her as kindergarten by age, whereas I'd like her to be classified as Pre-K by dev. level... we shall see!