Wednesday, October 31, 2012
Tuesday, October 30, 2012
Down Syndrome Awareness Month- October 30
More random facts about life in the sick house...
- My house is more sanitary than it has been in a very long time.
- Priorities bubble down to this: keep kids safe, keep kids away from each other, give all meds at required times, feed children, keep house sanitized to not spread germs,.... Then everything else. In that order.
- Even the most disgusting medicine, when served with chocolate syrup and infant oatmeal, can become appealing to the right audience in a way that a promised m&m afterward couldn't accomplish alone.
- Aleksa can take great deep breaths with an inhaler without a spacer because she hates the experience and begins gasping at the sight of it.
- I believe having pneumonia may have finally taught Aleksa how to cough. She always muffled it and wouldn't allow any force. Now she at least coughs when she's sleeping, even if she won't when she's wide awake...
- If you aren't leaving the house or expecting company, then if you shower and get dressed, it will work out that way. If you don't. You'll either have to leave the house or someone will come by.
- We have a LOT of door to door sales people that come down our quiet dead end road. They want to cut our trees, our lawn, our bushes, shine our porch tiles, clean the driveway, sell us magazines, monitor our security system, and clean our pool. Yet they all want money for it...
- Security system sales people creep me out. Especially the guy that came by today. Glad we have that all taken care of already!
- I love that each bedroom has a door that closes and opens and I can use this device to keep kids and their stuff somewhat separated. Loving the addition even more as we experience this little bought of the plague.
- I started making a meal on the weekend that is intended to be remade as different meals throughout the week and so far it is the smartest cooking plan I've had yet. This week is pulled BBQ pork, which will make 3 meals. Pulled pork sandwiches were yesterday aftere it cooked in the crock pot all day, tonight was pork, sour cream, and Swiss cheese quesadillas in the sandwich press. The last meal I'll save a few days and it may be sandwiches or quesadillas again, but I'll hunt for another variation on the theme... Any suggestions are welcome!
Monday, October 29, 2012
It's almost NOVEMBER!
October 1- Mike started getting sick (he had pneumonia, diagnosed on the 7th, and was out of commission about 11 days)
October 6- James started feeling really sick
October 8- James and Lynae were diagnosed with strep
October 9th- Kristopher, and Aleksa were diagnosed with strep and Brianna and Emma also had symptoms starting. Micah was treated since almost everyone else had it. Delaina avoided it though!
October 15- James diagnosed with pneumonia then hospitalized for 4 days in the PICU with respiratory distress.
October 22- Aleksa and Micah diagnosed with pneumonia AND Aleksa, Micah, Brianna, Lynae, and Emma all diagnosed with strep (AGAIN!).
Here we are October 29th and Aleksa had a temp of 105.4 (but it quickly came down with a tepid bath and meds!) on Friday night, Micah now has a thick runny nose, James started running a fever last night (again!) and has had loose bowels, Lynae ran a fever tonight for the FIRST time and has a bit of a cough, Wesley and Emma over the last 3 days or so have had up to a 100.0 temperature and have seemed "off" at times, but otherwise 'normal'. Several of the kids have loose bowels that I was told to generally just 'expect' based on the very strong antibiotic that they are now on (James is not one of them, hence his being more unusual).
I'm SOOOO ready for all of this to be over, and I'm praying that NOVEMBER 1st, we will ALL be healthy in this house!!
- October 1 Michael got sick, and October 31 5 of the kids will finish this last (hopefully!!) round of antibiotics.
- Delaina and I are the only ones that haven't been on antibiotics this month.
- James finished his antibiotic regimen on Saturday and started with a fever on Sunday after 19 days on antibiotics.
- Wesley was never tested for strep because he was already on 2 different antibiotics for H. Pylori (a stomach issue from his time in the orphanage which was identified for the third time during his g-tube procedure).
- Michael, Kristopher, and Lynae all are on the same church campus for work/school/mom's morning out and that's likely where it originated since the other 6 kids are homeschooled and not really out to pick up germs, but who knows!
- In total, our pharmacies filled 29 bottles (one was pills) of antibiotics this month between 9 of our family members (some of those 'bottles' are because the liquid course required more than one bottle for one child to finish a 10 day regimen).
- We visited our pediatrician's office 3 consecutive Mondays with new issues, new diagnosis, and new regimens for treatment. Two of those visits were for almost all (or all) of the kids.
Down Syndrome Awareness Month- October 29
Sunday, October 28, 2012
Down Syndrome Awareness Month- October 28
Saturday, October 27, 2012
Down Syndrome Awareness Month- October 27
Friday, October 26, 2012
Down Syndrome Awareness Month- October 26
From an Adoptive Dad of Multiple Kids with Special Needs
**No, this was not written By Michael or someone else we know personally**
The general population of America is mostly ignorant and oblivious to the reality of anything beyond what they have seen/experienced in their lives. While I acknowledge that having multiple adopted children (and special needs) is unusual, I do not worry about, nor am I offended by the general idiocy we face as a family. In my opinion, adopting multiple special needs kids will teach several lessons:
1. Who your real friends (and family) are. Many friends and family can't handle "it". In my opinion that's their problem and if my life is too much for them to handle they can pound sand. I've got too much going on to baby them. Fish or cut bait, all I've got to say about that. Go for quality friends, not quantity.
2. There is more to life than the McLifestyle. We have a lot of friends with two kids, three cars, big TV and a big fancy house in a neighborhood of houses that look exactly the same. Most of them are up to their eyeballs in debt. They can keep that life because self-glorification just isn't for me... (yes there is some generalization here, but not much). The reality is that special kids don't belong in the McLifestyle - and that's NOT a bad thing.
3. Do what works for you. (And no one can tell you what that is.) I don't know why people love to give unsolicited advice. But man it's annoying when a one-child mother of a one-year old tries to act like she's "been there, done that." when it comes to our lives and our family. (The caveat to this is older grandmotherly women who raised large families - they're like the Oracle in the Matrix.) The only person who can make good judgements for what your children need is the parents - everyone else should just shut up and stand aside.
4. "Let me know what I can do to help" = "I don't really care enough to really help, so I'm just throwing out this bone knowing that for you to call me would be to admit that I'm right about adopting all those kids being a mistake." Boy this is common isn't it folks? If a friend shows up at your door with brownies, they're golden. If they show up with a mop bucket and cleaning supplies, they're your best friend (or a maid.)
5. Accept the fact that some folks just can't fathom what you do. They'll try to do the math, they'll try to figure out how you fit in the house, how you make the meals, how you handle the medical needs, etc. The reality is - we just do it... we don't think about the math, we don't wallow over ourselves when we deal with medical issues. One foot in front of the other every day... it just happens.
Final caveat - I've found that it is important to surround yourself with people who understand and accept you, your family, and the special needs of your children. For us this has created an environment of stability and safety that helps our children grow and develop. We have a strong support system through church and (parts of) our family.
Thursday, October 25, 2012
And yet, I LOVE MY LIFE, I LOVE MY FAMILY, I LOVE MY CHILDREN, AND I LOVE MY HUSBAND :)
So, today started with the get the kids up, toileted, dressed, fed, medicated, shoes on, hair up, teeth brushed, glasses on, baby nursed, bag packed, and out the door for therapies. My mom, who returned from her 2 week stay with her sister during knee replacement surgery (VERY GLAD that my aunt is doing well and that mom was able to go there during that time!!), and promptly called me from the airport when she landed last night... agreed to stay with my two sick kids while I took the others to therapy. (pretty sure that wasn't a complete sentence... and I don't care :) ).
Being the cruel mother that I am (yes, said with sarcasm because in our lives at this time, this is necessary, not cruel and I recognize it as such :) ), the children that are coughing nonstop and do not cover their mouths at all and have an illness which is obviously contagious based on our family having it spread so quickly... they are staying in their rooms and playing. Or, staring at the walls if they so choose, or sleeping, or... whatever. But they are not out in the house interacting with (meaning coughing on everything and putting things in their mouths that other people will touch) everything and everyone else.
So, this morning's babysitting was more like "watch the house, send the kids to the bathroom once, and- oh yeah, this antibiotic kills their stomachs so you might get to clean up 10 yr old poop... thank God I thought to put her in a diaper after the first incident before we left". Which in turn became "do the dishes, catch up laundry, fold the towels, and watch Everybody Loves Raymond". Because that's what grandma's do. They don't just sit and make sure the kids are safe :).
I was only gone for two hours, yet somehow my mom can accomplish twice as much housework during that time as I can... Maybe it's the absence of the 5 children I took with me and the 2 at school??
Then, since I'm such a June Cleaver (HA!), I went through McDonald's drive-thru and brought home cheeseburgers for the kids and my mom, a caramel frappe for Michael, and a tea and snack wrap for myself. Mom stayed at the house with the kids for another half hour while they ate and Michael and I went to visit his grandmother, aunt and mom at his parents' house since his grandma had a procedure done and we wanted to check in with them all.
Back home and I turned most of the last of our non-thanksgiving turkey in to turkey soup (which turned out pretty good if you ask me! But I know you didn't ask...) and "hung out" keeping germy kids separated, finishing up the bits of laundry that needed attention, and sat on my bottom with a baby on my lap for some much needed down time. After all, the dishes were done and the laundry was caught up!
My children are going to be sorely disappointed when I'm not spending my "busy time" disinfecting the house and washing all the extra laundry from sick kids and instead once again focus on their school work. Or, rather, they will be excited because they actually LOVE doing school (most of them!) and they are getting tired of having free play (with very very limited toys due to sanitation's sake) and not a whole lot of structure to the days the last two weeks.
I am still standing, Michael hasn't run away yet (and after dinner I curled up in a chair with Delaina and she fell asleep and he completed showers and bed time on his own tonight while we supervised kids from a horizontal vantage point and slid a shirt over a few kids' heads that needed help), everyone has received their 40 something meds today, food has been served, the house is clean (even if it isn't completely picked up- especially the rooms that we aren't actively IN during the day with the kids), and tomorrow is a new day :).
Even when it's crazy, I love my life.
Down Syndrome Awareness Month- October 25
Wednesday, October 24, 2012
Down Syndrome Awareness Month- October 24
Chronicles of a Sleepless Night
I'm awake and impressed to ask a specific prayer request from those of you who pray.
Please pray against C-diff for my children! I strongly feel we need prayer covering and to ask this SPECIFICALLY. Thank you!
The Story: my daughter that has been toilet trained for BM's since 14 months because of a mixture of chronic constipation (making it easier to know she needed to go) and not liking "icky" in her diaper, woke in screams about 30 minutes ago because she had the worst upset bowel in the history of man. This is evidenced by the condition of her Tangled bed sheets which, by her description, "are icky all over, Mommy." I'm glad we haven't pushed the issue of wearing underwear overnight because I was VERY thankful to peel the pull up from her and shower her while putting all sheets, dolls, and pajamas directly in the wash on a "heavy duty" cycle... to be followed by a "sanitize" cycle in the morning.
Yes, it was that bad.
She is back in bed after telling me a wonderful story about her long hair and getting a 2:30am shower, bed disinfecting (Thank God for plastic mattress covers!), and new sheets.
I have washed my hands up to my elbow at least 20 times in the last hour and made a trip out to the outside trash cans with any evidence of our predicament.
I was also awake to check temperatures on our two with fevers and find them BOTH in the 97 range-- thankful for that! And I was awake to do a wonderful 2:40 breathing treatment for my wheezy little boy :(.
Now it's time for bed again, but PLEASE PRAY against c-diff for our children! Though ANY antibiotic can cause c-diff, the one that they are on "Classically" is known to cause c-diff as the most common serious side effect of treatment. And FIVE of the children are on that medication. Our pediatrician warned us... but tonight was a harsh reminder of what c-diff could look like. And I don't like the smell of it.
Tuesday, October 23, 2012
Today is a new day
Yesterday we went back to the pediatrician for a follow-up with James since he was released from the hospital on Friday. We also made the appointment for Aleksa and Micah since they were exhibiting the same symptoms as Michael and James had in the weeks prior. 100-102 fever, rough loose cough, and behavior that suggests they're just not feeling well (Micah was falling asleep eating, Aleksa was picking at everyone and everything).
Off I went yesterday morning with 8 little ones in tow while Kristopher was at school. They lined the floor of the doctor's office even though I'm sure they picked up even more germs that way... We sanitized well afterward! After the doctor listened to Micah and Aleksa and deemed that it was in both of their chests and both had pneumonia, she swabbed them for Strep. Surprise surprise... they both were still positive! Since we were all there, she swabbed the other three girls as well (James and Wesley are both still on other antibiotics). ALL FIVE still have strep! :(
Yes, this was just about my breaking point!
In the past 4 weeks we have had so much going on outside of our control that it has been a bit nutty. Mike's been sick, all 8 of the older kids (thankfully not myself of Delaina) have been sick, James spent 4 days in the PICU, we've had the car break down, an appliance need replacement, close relationships that have had major things happen, and now we're dealing with yet another round of sickness!
Our house went from full on homeschooling to "a little germ that came home from school and infected everyone in the house!"
And guess what? It hasn't been easy!! Michael was out of the workings of the house due to sickness and a business trip for almost 2 weeks, at the same time that all of the kids were diagnosed with the first round of strep. Then, as he got healthy and rejoined the family, James ended up taking his turn for the worse and since Delaina is nursing, it made more sense for Michael to be the one to be with him at the hospital. So, my solo-parenting gig took on almost another week. I'm SO GLAD to have Michael back home, feeling better, and I even took an almost 3 hour nap on Saturday afternoon! Of course it hasn't all been fun and games for Michael either while he was sick or hanging out in the ICU with James :).
Monday's news of two more with pneumonia and 5 still with strep was just about enough to knock me over. After an hour at the pediatrician and then driving through McDonald's for lunch, we came back to the house and "picnic'd" in the car after I picked up the feeding pump for Wesley and formula for James. I sat and nursed Delaina while everyone else enjoyed their cheeseburgers and chicken nuggets. Then we hit the road again and went to pick up prescriptions (which is why we didn't go right inside, plus it was a beautiful day!!). I started driving to our regular pharmacy and called to find out they were out of stock. I asked them to find another local pharmacy that could fill it and I drove to the park to wait it out again. The kids and I sat and took a break watching the dolphins play out the car windows at the river. Well, half of them slept... but the others watched the dolphins with me...
After about 30 minutes they had located the medicine and sent me to two pharmacies to pick it up. I went to the first pharmacy that took over an hour to fill them, then off for the 20 minute drive to the second pharmacy who filled it quickly (thankfully!). At that point Michael realized he wasn't getting out of his doctor's appointment (his follow-up for pneumonia) and I needed to pick up Kristopher at school.
By the time we arrived home 6 hours after leaving for the doctor, we had all 5 kids' prescriptions and had Kristopher, so I guess it was all worthwhile!
I wasn't so happy to see that unlike the previous medication... this one had different dosages for every child.
We now have quite the assembly of medications...
James takes 8 doses of meds a day
Micah takes 11 doses a day
Brianna takes 3 a day
Lynae takes 3 a day
Emma takes 3 a day
Aleksa takes 9 a day
Wesley takes 11 a day
The grand total: 48 meds/day. YIKES
And here is where you curl up in to the fetal position on the floor and cry. (Yes, I considered it...) Then you get up, put yourself back together, recognize that this is a temporary thing and it's worth it because when they are all HEALTHY then 90% of those meds will stop... some as soon as the next few days for those that have been on them for a while already. And you make another meal, prep another round of meds, and keep putting one foot in front of the other.
Aleksa and Micah are each playing in their bedrooms, once again. Both have rattley coughs and don't need to spread the wealth whether it's the same germ the other kids have or not. Lynae started with a cough this morning, as did Emma, but after a few coughs they both appear fine now. It's a TV marathon day today, though... keeping everyone SEPARATED, confiscating most toys from bedrooms and keeping the playroom closed up so toys can be sanitized and so they don't spread the germs more, and generally just trying to GET BETTER!!
All the while, I'm attempting to keep Delaina away from the loving brothers and sisters that want to help her with her pacifier or kiss all over her hands (which she puts in her mouth).
Today's goal is to keep kids separated, sanitize (yet again), and to keep my sanity. And, Brianna will go to karate this afternoon (she will have had the STRONG meds for over 24 hours and it isn't somewhere she should be swapping germs with people!).
Tomorrow will be back to schooling (at home), a speech evaluation for two of the kids (at home), and youth group at night for two of the kids.
Time to get healthy.
**However I reserve my right to curl back up in the fetal position on the floor and cry if something else major happens this week.. ok?? :) **
Down Syndrome Awareness Month- October 22
**I was asked why only 3 of the 5 kids w/ Ds have a picture of them holding Delaina. In the effort to keep Delaina SAFE, we decided that it wouldn't be a good idea to have Emma or James hold her as a newborn. The transfer of "it's ok when we are here" vs "you can't touch her otherwise" isn't something that they understand right now. They have had many opportunities to interact with her, but we didn't do a "hold the baby" shot with them for the sake of safety :) **
Down Syndrome Awareness Month- October 23
Sunday, October 21, 2012
Down Syndrome Awareness Month- October 21
Saturday, October 20, 2012
Down Syndrome Awareness Month- October 20
Friday, October 19, 2012
James is home
And Micah's running a temp of 102 with a loose cough.
Down Syndrome Awareness Month- October 19
Thursday, October 18, 2012
The long Thursday
Then, what the day looked like for the other 9 Cornishes
6am- I woke up and got myself going, fed Delaina and put her back down to sleep
6:30- wake up kids, start them dressing and toileting
7:15- shoes, meds, teeth brushed
7:30-Delaina up, dressed, and diapered
7:40- head out to the car
8:05- pull up at the church and unload
8:15- look around at the school book fair and pick out a few books
8:35- drop Lynae off at KAD at the church
9:00- eat McD's breakfast (me!) at the park in the car
9:30- arrive at therapy center and bring everyone to the restroom
9:50- head outside to stand in the parking lot because there's about to be a fire drill that we don't want to be a part of!
10:10- go back inside and start first OT session
10:30- start second OT session and first PT session
11- start 3rd OT and 2nd PT
11:30- start 4th OT and 3rd PT
12:15- last therapy ends
12:40- pick Lynae up at the church
1pm- drive through Wendy's for lunch for the kids (not me...)
1:45- finish up supper and begin resting time
2:30- put shoes back on, get back in the car
3pm- pick up Kristopher form school
3:20- get everyone back in the house and ready for a little bit more resting time
4:00- Melani arrives for Speech Therapy
4:30- second ST session
5:00- 3rd ST session
5:30- ST ends for the day.
5:40- eat dinner
6:10- start getting kids in to pajamas
6:30- convince the rest of the kids they need pajamas
7- brush teeth, give meds (not in that order)
7:15:send the kids to BED
8pm- send Kris to bed
8:30- catch up with Michael on James
9pm- dishes and get Delaina settled for the night
10pm- pack for the hospital for a day or two
11pm- set clothes out for tomorrow
11:30pm- FALL ASLEEP WRITING THIS.
Wednesday, October 17, 2012
Tuesday, October 16, 2012
Now that he's in the hospital, he spent the night last night with mask oxygen at 5 liters, and today went down to 1.5 liters and is holding in the upper 80's and low 90's for his sats. His respiratory rate is better, but still high (33), and his heart rate is the same (resting rate of 150).
Looks like he's going to camp there for a little bit. Please pray for James, that he would be able to kick this quickly! He's been diagnosed with viral pneumonia and has inflammation in both lungs. Hopefully he'll be moved to a floor tomorrow!
Down Syndrome Awareness Month- October 16
Monday, October 15, 2012
Down Syndrome Awareness Month- October 15
Sunday, October 14, 2012
Getting back in the swing of things
I'm trying out something new (to us). Since Brianna and Lynae are so independent and desiring to do more "school time" then I have been able to stop and do with them, I'm trying this with just the two of them for right now. I think it would be a MESS with all 6-7 kids that are home, but for these two... we'll see!
I purchased 8 bins at $3 each, and that is the only cost. We'll use the bins even if this idea crashes, so it's a decent investment :).
I have rolls of velcro and each bin is getting a strip of velcro on one end. I made up laminated cards with the numbers 1-8 on them and also 4 cards that say "Mom" on them. The goal will be that the bins that are numbered, the girls can work through in that order, starting with bin #1. I put enough in each bin for the two girls to work together OR for one of them to work alone. But the goal will be for them to both start with #1 and to move on individually as they finish.
Some of the things in the bins are lacing cards, a coloring page and crayons, shape bean bags which they'll name the shape and toss it in the bin, clothespins and a small cup that they clip them around the rim of, a workbook with manipulatives, small puzzle cards with a number on one half and that number of objects on the opposite side... etc. The worksheet or workbook will say "mom" on the tag and whenever I'm ready to work on that one with them they'll do it. I plan to put several items in each of those bins so we can minimize the amount of bins we need. After all, the kids aren't doing those on their own, so I can work through it in one shot or split it up if needed. Some of the things, like naming off shapes, I'll want the kids to do when I'm nearby so I know they're saying the right shape names and to help if they don't know (trapezoid, anyone?), so I'll put Mom on that one, but it will be alone in its bin.
We'll see how this goes! I'm encouraged that their independence thus far will show that they can do a majority of those independently. We'll work on the other kids slowly... to see if some of them might be able to also do some independent work, even if it's on a more simple scale. I think once the two girls get going, that Micah and maybe Emma or Aleksa may be close behind them. With a different set of bins, most likely... :)
What kinds of activities do you have your Prek-1st grader do independently? Would love some more ideas!
Down Syndrome Awareness Month- October 14
Saturday, October 13, 2012
Friday, October 12, 2012
It's been a long, long, long week
Down Syndrome Awareness Month- October 12
Thursday, October 11, 2012
Down Syndrome Awareness Month- October 11
A fresh start
My house smells like Lavender, a good smell... a pretty smell... now if only that wasn't because I used a half a can of lavender scented Lysol to sterilize the house... :)
It's a brand new day, the kids shouldn't be contagious any more with Strep, however Michael still has another 5 days that the pneumonia *could* still be contagious, and James is still coughing and could be on the edge of pneumonia, so we won't be taking any chances with those two!
Time to get outside to the fresh air at the play set, finish sterilizing the house, wash all the kids' sheets and replace their toothbrushes, then get back to the regular routine of things around here... minus Michael! I have chicken noodle soup in the crock pot and a full day ahead.
Tomorrow starts a 3 day weekend for us because Kristopher is out of school :) A HEALTHY weekend I hope!!
Wednesday, October 10, 2012
Down Syndrome Awareness Month- October 10
Michael and Emma the first time we met in February 2008, Ukraine.
Emma is 5 yrs old in this picture.
Tuesday, October 09, 2012
Dropping like flies
Delaina and I are the only ones that aren't being treated, and I'm trying REALLY hard to keep her from being exposed too much! She's still young enough that we were told she would need to be hospitalized if she got strep. Keeping her either in another room (where she cries) or in the sling (mostly covered from the other kids and not out of my reach!) all day long! If she wasn't spoiled before... (ha! she was!) then she will be now! Oh well, such is the price we pay for health, or what I hope turns out to be keeping her healthy :).
Today was Delaina's well visit and she is 10 weeks old and weighs 9.6lbs. On the tiny side, but growing well in length (22.5") and otherwise on target developmentally.
We also got current weights on ALL of the other kids except Wesley in the last 48 hours (Wesley was already on antibiotics for H. Pylori-- his third treatment, it doesn't want to go away!-- so we didn't worry about swabbing him for strep since it's the same treatment as he's already on).
Aleksa: 55 lbs
Emma: 42 lbs
Kristopher: 50 lbs
Brianna: 32 lbs
James: 30 lbs
Micah: 34 lbs
Lynae: um.... I forget! Hmm... She's under 30, though... probably about 27? She was yesterday!
And just for fun, a few pictures of the one that is growing the fastest around here:
Down Syndrome Awareness Month- October 9
Monday, October 08, 2012
The downhill spiral
James has Strep, and has the beginnings of pneumonia! And, surprise surprise, Lynae also has Strep!
Tomorrow instead of flu shots we'll be bringing the other boys in to be swabbed for Strep! Except for Wesley because he's already on antibiotics since he was recently diagnosed for the THIRD time with H. Pylori. That means that the treatments aren't working on him! He has had it from being in the orphanage in Ukraine, as did Micah.
Now we have a lovely regimen of 13 meds per day between my husband, sick kids, and the well kids that take regular meds. Plus Tylenol/Motrin and Probiotics! I've also cancelled the Endocrinology appointments and dentist appointments for the week. No use doing bloodwork when the kids are sick, and no one wants to be in their faces with Strep in the house either!
I guess we'll be having less of a busy week after all. Depending on Brianna and Emma's throat status, we may be cancelling their cardiology appointments for Thursday too.
In good news... Michael (yes, he still has pneumonia and should have been sleeping...) installed our microwave yesterday. So, now we can at least have popcorn with our movie days since I'm trying to keep the kids separated and not infect every toy and surface of the house if we can help it!!
Off to sanitize some more...
Down Syndrome Awareness Month- October 8
One of the pictures of Brianna that I thought really resembled the earliest pictures we had of Emma before we adopted Emma
Sunday, October 07, 2012
Nope, I didn't give up on blogging!
Tuesday Michael came down with "something". To the tune of a 102 fever! He went to the doctor with instructions to tell the doctor that he has a 9 week old baby, 6 kids with special needs, and he was leaving on a business trip the next day and was going to be in a car with 6 other people for 8 hours each way to get to and from the conference for the rest of the week! LOL
He did... and the doctor found nothing wrong after blood work and a thorough symptom and physical exam. So, off he went on his trip Wednesday to Friday.
The trip would be why I hadn't blogged! :). I was then solo-parenting for three days, which takes a certain amount of juggling with my crew. Thankfully we made it through and were ready for Daddy to be home yesterday!
Saturday we got up and went to horse therapy, then came home and Mike laid down for the afternoon. About an hour before dinner Mike was up and feeling pretty good. He said he felt he was on the upward swing, and I left for an hour to get a microwave to replace the one we had that died last week. By the time I got home he wasn't feeling well again, though!
I was back on my own on Saturday, though Michael was home, because we quarantined him back to our bedroom (even though he'd been around the kids for an hour).
During the day, James also came down with 101 fever! So... I made it through the evening, baths, bed time, house work, then CRASHED, similar to my Friday night routine (though my sister came over and hung out, but I was asleep probably before she made it home! :) ).
Today Michael went to the doctor again. He has... PNEUMONIA!
So, I'm on my own a few days while he takes some heavy antibiotics and tries to kick this thing before it kicks him. He's already had it for 5 days now. James woke up with no fever and seems to be feeling fine today, however we've still quarantined him from the other kids too! I really don't want to see what it looks like for this to go through our entire family!!
Now we're on to planning for the coming week, 2 doctor's appointments (including James so we'll get him checked out well even though it's a well visit) Monday, then 5 kids going to the doctor Tuesday, 3 to the dentist on Wednesday, and 2 to the cardiologist on Thursday! Friday I have on my calendar that Kristopher has off of school, so hopefully everyone will be feeling better and we can make a fun three day weekend next weekend! :)
Down Syndrome Awareness Month- October 7
Saturday, October 06, 2012
Down Syndrome Awareness Month- October 6
Friday, October 05, 2012
Down Syndrome Awareness Month- October 5
Thursday, October 04, 2012
Down Syndrome Awareness Month- October 4
It’s dinner time as I’m typing this (yep, of course I type and pre-post blog posts! How else would I have them typed every morning?? :) ), and dinner time always brings about the “he gets this, she gets that, can this one have more?” in our home.
Like many households, we have picky kids and kids who will eat anything. We have kids with insatiable appetites, and kids with no appetite at all. Unlike many other homes, we have children that are prone to obesity and children that are probe to being underweight. We also have children that have medical reasons for not being able to eat well, with allergies, and with difficulties with certain types or textures of foods.
Dinner time has gotten MUCH better over the last few months, and steadily becoming more “normal” as time goes on, but it is still a relative form of “normal” for our household!
Here’s a little run down on the juggle that we call “family meal times” here at the Cornish home!
Dinner time gets 3 plates and 3 bowls. Emma, Micah, and Aleksa don’t do so well off of plates most of the time, so for sanity, they usually get bowls :). Micah’s food has to be cut REALLY small, cheerios size or smaller, because he doesn’t chew! Kristopher, Brianna, and Lynae eat off of plates and do just fine with that. Kris, Emma, Micah, and Aleksa all eat what I’d call a “good kid portion”, though three of them (not Kris) really have no “off” button to know they’re full. We have to monitor how much they take in and cut off meal time for them when they’ve had enough to eat!
James drinks a soy based pediatric drink (similar to Pediasure, but he’s allergic to casein- milk protein- and can’t have Pediasure). Wesley gets Pediasure through the g-tube.
Aleksa and Kristopher both drink regular milk. Micah does as well, but his has to be thickened to the consistency of honey or he aspirates (swallows in to his lungs and ends up with pneumonia!). Brianna and Lynae drink Milk sometimes or also will have Pediasures depending on how they’re doing with eating recently. Emma gets soy milk because milk gives her some digestive issues (ie: GAS!).
Meal times are pretty predictable here now, though, even though it’s a lot of different things that we have to take in to consideration.
The hardest part can sometimes be this: How do you encourage your small eaters (Brianna, Lynae, sometimes Kristopher, and James and Wesley) to eat more and still “cut off” your big eaters (Aleksa, Emma, and Micah) so they don’t have TOO much? That part can really be a juggling act at times. Can I offer some kids a high calorie piece to the meal and offer others something much less? Or give water as a second drink to some and milk or Pediasure to others? Well, the answer turns out to be YES. Because each child has different needs, and each of their needs has to be met differently!
We don’t want to give our kids an unhealthy start in life that will lead to obesity as an adult—especially our children that may be predisposed to that. By that, I mean those who have much lower tone than the others and who gain weight quickly- Aleksa and Micah and somewhat Emma at times. Healthy habits are great for EVERYONE, but more essential to those that would have a difficult time backtracking to take OFF extra weight once they become overweight. Aleksa and Micah aren’t overweight right now, but they are both on the “huskier” side of “good” weigh for their heights.
If you’d like to share… tell me, how do you manage food differences, quantities, and managing weight for your child?
Wednesday, October 03, 2012
Down Syndrome Awareness Month- October 3
Delaina is now 9 weeks old. Hard to imagine that it’s been 9 weeks already! She’s grown so much, though, and has such a sweet temperament. She has smiles for everyone she sees and even calms for Brianna, Lynae, and Kristopher now. She’s not a big fan of being put down, but who can blame her? I’m pretty sure she’s not figured out that she’s the 9th child quite yet, because she still makes demands as if she’s the one and only. Honestly, that’s quite all right with us :). There’s enough Mom and Dad to go around for all 9 of the kids!
School is going great. I’ve not used the school room every day, but when we’re doing whole group activities it’s great, and when we need to be secluded away from the distractions of the house, or a few of us are working and some are in the other room, it works great!
I’ve made a document that has a list of skills that I want each of the kids to be able to accomplish. It has a list of 50+ household and community items I want them to be able to identify. It also has directional phrases I want them to be able to take oral and/or signed directions to accomplish and to do so successfully. Lastly it has positional terms, like on, under, in. My social skills for the kids is that they will be able to take those oral directions and pair them with the identified and named objects to follow directions. I’ve spent a lot of time working on these skills with Micah, James, Emma, and Aleksa especially, and with the vocabulary building with Wesley as well.
Of course we’re doing academic subjects too- working on colors, shapes, letters, numbers, etc. with these five, and working on reading, phonics, sight words, spelling, addition, subtraction, spatial terms, etc. with Lynae and Brianna.
We’re working around doctor’s appointments at the moment, and that comes a few times a year when we have clumps of appointments. Thankfully those aren’t every week like they are this week and next!
Aleksa’s behavior overall has improved drastically after we decided to go ahead with medication for her. I am amazed at the sweet and pleasant little girl she is becoming as she has been able to control her impulses more (when the meds are active anyway) and to stop and think about directions given. We have had very firm boundaries with her as far as spaces she is allowed to be without asking within our home (excluding the play room because she couldn’t control herself in there) and now she has frequently been able to ask to go play in there and been appropriate for quite a length of time without me standing in there with her. That’s a huge accomplishment for her!
We hadn’t used James’ tube from Thursday until Monday except for meds because he actually ate everything he needs to have in a day orally. That ended Monday. I’m thankful for the g-tube, to not have to ‘fight’ with him to eat or take meds. It also appears to be like a long lost friend to him. He must not mind it because he really hasn’t cared that it’s there!
We figured out how to be able to replace the microwave. Though I’ve had more offers for people’s old microwaves then I could have imagined! We are very thankful for so many friends willing to loan or give us their microwaves! I’m also slightly curious if most of our town thinks that I cannot survive without a microwave?? :)
I went to Aldi’s on Sunday on a whim. I had been in a few weeks prior when I needed just a few things and was pleasantly surprised with the cost of my groceries from there. This time I had a much longer list and was really glad to see that almost everything that I needed I was able to purchase there!
While I was out after getting flu-shots on Monday I stopped in at Publix and picked up the three things I couldn’t get at Aldi’s: a pot roast, bananas (theirs were green), and slow cooker lining bags. If you’ve never tried the slow cooker bags, they are well worth it to me. I hate scraping baked-on yuck out of the ceramic part of the crock pot!
Monday I decided to COOK. I needed food for the rest of the week and had a busy week ahead, so that was my opportunity. I started the pot roast in the slow cooker around lunch time and by dinner it was cooked and able to be pulled for pulled beef.
I took the cooker liner out of the crock pot and put in two cans of sloppy joe sauce and 3 lbs of hamburger and let that start cooking. I also put a huge $5 pizza from Aldi’s in the oven and that served the kids and I while Michael was at a meeting on Monday night.
I now have served the family dinner tonight and also have enough for a dinner then a lunch of sloppy joes as well as a night of pulled beef sandwiches.
I’ll be making a breakfast casserole using a ham steak that I bought at Aldi’s this week and 18 eggs as well as some shredded cheese, salt, and pepper, for dinner one night. I’ll sneak in some shredded up spinach as well. They can’t pick it out of eggs :).
Tuesday, October 02, 2012
We were having a behavior problem.
It was something I tried to extinguish over and over again, but nothing was working. Several of the kids would dump out our toy bin (a Rubbermaid bin at this point because they’ve destroyed two other types of storage we’ve attempted ;) ) and they would turn the bin upside down and bang on it. Then, some of them started climbing under it, and the kids would bang on it with the kids under it, and even started sitting on it holding the child under.
NONE of this was ok! Dumping every toy on the porch—not so good! Banging on a bin, much less a bin with a child IN it—not so good! Climbing under a bin to hide/be banged on—not so good! Holding another child down inside of an upturned bin—not so good!!!
I tried several different things, and eventually just took the bin away. Then, there were just toys everywhere and I couldn’t do anything about it. It got pretty annoying looking out in the play room and seeing all the toys out with really nowhere they COULD be put away
Until as Emma threw yet another toy across the room and I said “throw them IN HERE” and gave her the bin back. Then Micah joined in. I cheered for them, told them to keep it up, got excited that they were doing it, and guess what?
I just called out to the porch and said “clean up the toys!” because I heard banging. The bin is now full. The floor is now empty. Mom is a happy mom.
Who knew that their behavior of DUMPING and misusing the toy bin would be the behavior that led to them learning to independently clean the play room?? :)
Monday, October 01, 2012
Down Syndrome Awareness Month- 31 for 21
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I'm blogging all month-- Pictures of my kids with Down syndrome over the years every day! Plus, posts catch as catch can :)
Down Syndrome Awareness Month- October 1
And the coming week will bring…
I really thought that September was our BUSY month as far as doctor’s appointments go with our kids. I’d put off all of our late July and August appointments including surgeries until this past month when I knew I’d be feeling better and able to get around with all the kids after c-section recovery.
Now, I’m not so sure that October will be any better!
This week we have 3 kids getting flu shots, 2 kids going to the dentist, and our regular 10 therapy appointments on Thursday.
Next week we have 3 kids with well visit appointments and 2 will get flu shots at that time (Delaina won’t get a flu shot), and another 3 kids getting flu shots, then 2 going to the cardiologist and 8 of our 10 regular therapy appointments as well!