Our friends and family! And, winners of the Most Memorable Group. :)
Sunday, October 30, 2011
Sunday nights I set out pill minders with everyone's vitamins and pills for the week, and that goes in to a bin with the liquid meds and inhalers, etc that are also done at the same time. It takes 20 minutes one night and saves us 10 minutes searching it all out and double checking it every morning.
Saturday, October 29, 2011
Do we seriously have two different things going through our house that are both bacterial, or do the rapid strep tests really not work that well???
I'm now on an antibiotic, but feeling pretty crummy. Need to feel better by tomorrow night because the kids have been looking forward to our church festival for WEEKS. Better yet, MICHAEL has been looking forward to it, because he gets to finally use his 25' trebuchet to launch pumpkins across the church campus as he (and his dad and Kris... and possibly a few of my brothers...) competes against another trebuchet team to see who can launch it further!
In fact, he and Kris are there right now and according to his text "may be a while..." Hmm... now to think up dinner (fast) for the 7 sick kids at home with me right now. Wishing they could all eat soup. Wouldn't that be nice? :)
Friday, October 28, 2011
Wednesday, October 26, 2011
After a bit of math and calculations about how much each of our children eat or drink of what type of milk, I discovered (and will spare you the calculations) that we spend close to $35 every month on soy milk alone. James is allergic to casein (milk protein). Wesley and James both get the same 'smoothies', therefore most of them are made with soy milk to keep from 'accidentally' having James get milk. Lynae and Emma both get upset stomachs from milk, so also drink soy. It's a lot of soy milk. Micah, Aleksa, Kristopher, and Brianna still drink regular milk, but I can't buy a cow, so I went about trying to find a way to make soy milk instead.
A friend of ours who is also parenting a special needs child gave me a quart of 'home made and home canned' soy milk, and let me tell you... the kids didn't notice a difference. I, personally, don't care much for soy milk... however I'm not the kids, so I was still thrilled!
I waited a while, but eventually worked out the calculations of whether it would be worth it to buy a soy milk maker. I VERY quickly found out that it WOULD!
With the cost of soy beans and the amount of milk that they make, it costs about $1/gallon (beans and additives) to MAKE soy milk, and $5/gallon to BUY it. That meant that aside from the price of the actual soy maker, I would have a savings of about $28/month. That's $336 a year. The soy milk maker cost $100. That's about 4 months worth of 'savings' before we REALLY see any savings, but in the long run, it should save us over $200 in soy milk alone in the next year.
Today I got my soy beans (GMO free) and set to work making milk! I made up the boys' smoothies for the next 2 days and made some milk for the other kids to drink as well. Though I understand it is better when you soak the beans first, I was anxious to start and made some 'dry bean' milk today while starting some beans soaking as well.
Now that I know how to milk a bean (which, by the way, will also make milk with any other type of nut, bean, or rice), maybe I'll start looking in to that cow...
Friday, October 21, 2011
Our Crew… in true form!
James blends in with the pumpkins :)
The ones that followed us home (that is one GIANT pumpkin, tho the picture doesn’t quite do it justice…)
The Crew with Miss Katie (our sitter and the kids’ buddy!)
I think Emma liked the pumpkin patch a bit :)
Thursday, October 20, 2011
I woke up with a startle and turned on the light.
"Mike, look for a bee or wasp. Something just stung my thumb!"
With that, I looked up. He, for some reason, looked down.
There, on our BED, was a SCORPION!
Yes, I got stung by a scorpion while I was sleeping. YIKES!!!!
I remember scorpions have venom... and I don't remember what characterizes good and bad, or whether there really is any such designation, so I pull out the computer and proceed to search for what to do with a scorpion sting.
"Wash thoroughly with soap and water."
"Elevate above the heart."
"Rotate icing 10 minutes on, 10 minutes off."
"Call Poison Control immediately."
Seriously, though it really did hurt like a dickens, I wasn't thinking that this 1" long little bug could pack a punch that would actually cause the amount of damage described in some of the web pages. That said, it was 4am and there was no one ELSE I was going to call... so I dialed poison control anyway to let THEM tell me what to do.
Thankfully, Floridian scorpions are similar to a wasp or bee sting. No "neurotoxins" in the breeds that are found here. Thank goodness!
By about 5am I found my way back to sleep after taking some Benadryl at the poison control person's request. I have now been dragging all. day. long. I hate Benadryl!
Tomorrow at 9am our house pest control people will be at the house to re-treat it!! Apparently, their pesticides need a little boost...
Better yet, it's the kind of love that Jesus showed us and we try very hard to continue to emulate in His likeness. Can we do it? "Not without Him!"
Crazy love is what calls a 25 year old couple with two children to leave them home with their single aunt with the help of grandparents and travel half way around the world to bring home two very sick children.
Crazy love is what brings a family of 7 with a 3 month old baby to offer their home and love and family to a 3 year old orphan with special needs.
Crazy love is what brings a family with 4 disabled children and two others to leave all of their children in the care of grandparents for a second time and, during the holidays and busiest part of the year... the time when families tie together and celebrate Thanksgiving and Christmas... to go halfway around the world for a second time and bring home a quadriplegic blind child.
Crazy love is what drives a family that's about to have 7 children to complete an entire adoption dossier "just in case" and raise all the money "just in case" a child that they've prayed for for three years is released to be their daughter while they are in a foreign country.
Crazy love is what it looks like when GOD calls the shots, and we listen. It's when two parents, two individual people called by God to love one another and to BE ONE each listen intently to God's calling on their life (not lives...).
Crazy love is what it looks like to say "YES" separately, then come together and say guess what... I said YES. And so did I. Even when, at that time, one was in Africa and one was at home in the USA.
Crazy love is what it looks like to say YES for all the reasons that don't make sense. It's because there's a need, that God provided for through YOU.
Crazy love is when things are HARD, but hard is GOOD.
Crazy love is knowing that walking the life of a Christian isn't about being EASY, or COMFORTABLE, or even always about being HAPPY. BUT... Crazy love knows that DELIGHTING in these things is where the real JOY comes out.
Crazy love... I agree. I think we have it, and I'm VERY glad to share it...
Do you have CRAZY love?
Hope is Fading – Orphan Sunday from Allan Rosenow on Vimeo.
Wednesday, October 19, 2011
Brianna is now SOLID on her letter recognition! She knew her letters before school started, however I felt it would benefit her to continue working on making sure she wasn't having trouble with common mixups between letters, and could recognize letters in any way they were presented to her.
This first video is letter dice from a game similar to Boggle, but made by Cranium. She enjoyed the idea that this was something different, and this video is of the very FIRST time she'd ever seen these dice :)
Tuesday, October 18, 2011
Our friend April made a BEAUTIFUL cake for Aleksa!
Aleksa ABSOLUTELY LOVED us all singing to her! She laughed and clapped and threw her hands up in the air! What a HAPPY little girl she was!!
Time for Cake!
HAPPY BIRTHDAY ALEKSA!! We love you!!!
Monday, October 17, 2011
Thursday, October 13, 2011
In the past I've participated in 31 for 21 (31 days of blogging for awareness about Trisomy 21: Down syndrome). This year, I didn't do it.
I've also always advocated heavily for orphans with Down syndrome during this time and the need for adoptive families as well as humane care and treatment, funding, therapies, etc... for children with Ds. This year, notsomuch as a word.
Honestly, it's because I don't feel like it.
For the last several years since I got involved in blogging and adoption and involved with the Ds community (I wasn't very involved prior to our interest in adoption, even though Brianna is our bio daughter and is 5 1/2), I've had this driving force, this purpose. A place to direct people to put their passions, their ideas, their finances to help others if they themselves couldn't do it, and a real drive to see it all work.
I don't have any of that anymore.
I decided this week that I needed to find that drive again. Find a new outlet that I can share and support. I can't let something that has "let me down" also be something that steals my passion.
I still have a passion for children with Down syndrome!
I still have a passion for adoption!
I still have a passion for helping families to complete their own dreams of adopting children with special needs!
And I still, absolutely, have a passion for missions.
So what's wrong with me??? Why don't I feel like being a part of the 31 for 21 and blogging for Ds awareness month, and sharing orphans? I needed a new source for my passion.
HERE IT IS. You've probably seen links to this organization before, but it has a BRAND NEW website! Please go and check out the ELI PROJECT!! This organization is founded by Chris Malone, a father that was one of the very first families that I helped through the adoption process. He adopted Misha (now Micah), that was the child I met along with Aleksa when we went to adopt her the first time. He adopted his Matthew at the same time, and later went back for another son and daughter, one of whom was from a baby house near Wesley and I had the pleasure of meeting. I've met two of Chris' children (tho they were orphans when we met!) and I feel as though I know Chris VERY well, though we've yet to meet face to face.
Chris and his sweet wife Mary have 9 children including their bio son Eli that has Down syndrome and four typically developing (slightly older) children and four children with Ds adopted from Ukraine. Their passion is so TRUE and so DEEP for the orphans of Ukraine that they have already SOLD THEIR HOME and will be relocating to Ukraine in the coming months, probably just after the new year.
What a blessing it is to 'know' this family, and to walk beside them and lift them up in prayer as they go! What a joy it is to know that the Eli Project is run by a man of great courage, faith, and strength! They also have a solid board of directors and a mission statement that clearly marks their Christian intents and purposes.
I am very glad to 'rekindle' my spark this month and set my feet firmly in advocating for the children listed on the Eli Project! I hope you'll go and see the children there. MANY of the children there are not in Ukraine, and have different country requirements. Take a look at their SPECIAL NEEDS page :). Eli Project is an organization that you can donate to to help these children find families! Our Wesley was able to come home BECAUSE he had a grant. We likely wouldn't have considered adopting again if we had to come up with the entire $24k to bring him home. But GOD KNEW!
Grants really do make a big difference in the life of a child...
Ok, enough of my "I don't feel like it," and go check out www.eliproject.org and see the sweet waiting children :)
And while I'm at it, here's a little fact worth sharing about the situation right here in the good ole' USA about Down syndrome:
Down Syndrome Awareness Month... #14: There is typically a waiting list of people ready to adopt domestic children with Down syndrome. Ironically, however, the abortion rate that comes with a prenatal diagnosis hovers around 90% (and higher). A new prenatal test that only requires a blood draw does not bode well for those statistics either.
2: I may be leaving the country for a week in 6 weeks or so! (nope, not adopting!!)
3: Aleksa's FIRST birthday is coming up soon! It's been NINE years in waiting, and it's time to celebrate HER! :)
Tuesday, October 11, 2011
I don't have a whole lot of days where I feel like from beginning to end I was left with a feeling of ACCOMPLISHMENT. Today was one of those days, though!
This morning we got all the kids up and out to school. Michael brings the two younger girls to the church and I bring the six other kids to school on Tuesday mornings. After walking the little boys to their classroom in order to drop off a box of diapers for them, I left the school before 8am. I drove from there to a park that I like to frequent, but there was nowhere to park since we've gotten so much rain! I decided to drive over to the river instead and stopped at a different park. I pulled out my phone, checked email quickly, sent a quick email that I'd forgotten to write earlier, and settled in to start on my Bible study. That's where the "accomplished" part of my day leaves off a bit... because I'd apparently taken the study book out of my bag and left it next to my bed.
I decided to go ahead and go to Wal-Mart to pick up a few things for our kitchen. I was feeling like the kitchen was taking over, and needed to get it organized before I went nuts :). I found some "cracker jars" that look like large fat mason jars. They were only $5 each, so three came home with me, along with a chrome "bread box." I picked up two clear bins that are small with latching lids as well.
I also decided that while I was there I should be useful, and I picked up 5 gallons of milk and 4 containers of soy milk, 5.5 lbs of ground beef, an onion, a can of chile beans and a can of corn.
When I got home it was just before 10am and I got to work on my kitchen. We have 4 sets of meds at our house. 1) Medications taken daily that are pre-dosed in to a pill container or are liquid and dosed right from their container. 2) Medications that are for the rest of the month and are used to refill the pill container each week. 3) Medications that are for further out than this week because I buy in bulk... for instance 3 bottles of Ginkgo cost the same as one once you include shipping and bulk discounts, so we have extra. 4) Medications that are given for symptoms, such as Tylenol, Advil, Mucinex, and Benadryl.
I took the two plastic containers that I'd purchased and put all of the "extra refills" and all of the "regular refills" and put those in to the bins. I cleared out a section of our cabinets that goes back in to a corner and is somewhat difficult to access... therefore rarely used... and put them there. I had a third of these containers at the house already, and I put the daily meds in that one and cleared out a much more accessible place for that bin. I then took the bread box and put all the 'occasional' meds in it! I added the nebulizer masks, nasal syringes, markers used to mark lunch containers, and the canister of calorie additive that we use for the boys. It closes up and you'd never know it was our little pharmacy on the counter :).
I also cleared off ALL of the counters at the house! I moved some things around just for the sake of having a fresh look, like our convection oven and toaster. I even loaded the dishwasher.
The cracker jars became the home to our sugar, a bag of coffee beans, and the thickening packets we use for Micah's drinks. With those all looking similar (tho one is a different size) and the bread box hiding our meds, and the other meds all off the counter... and the counters CLEAN... it's amazing how clean the kitchen now looks!
My productive day then took a break while I went and got kids from school and church, dropped Kristopher off at the church to stay with Mike then go to karate lessons, and got everyone else home and occupied. On Tuesdays I don't even make dinner once or twice a month... because we often get pizza for buy 1 get 1 and that's worth it to not cook :). Today was no exception and I made cups for the kids and let Michael "cook" by picking up pizza on his way home. I did do one thing though... I'd purchased an alarm clock with a dual radio alarm, and I set it for the afternoon and bedtime doses of medication for Wesley. That way if we get in from school and I don't remember to give it to him right away, soon an alarm would sound (well, the radio anyway) to remind me to give it to him. It's hard to get in to new routines, especially when they break in to otherwise "unplanned" times!
After dinner it was baths x7 (Kris showers in the mornings), PJs, meds, teeth, and bed. Believe it or not, the kids went down EARLY.
Then, I got to work again. I started with cooking, and browned all the ground beef I'd bought earlier. Apparently I need to invest in a larger frying pan, because I had to employ THREE to cook the 5.5lbs of beef. Anyway, I cooked it all up, drained it (yikes, 24 ounces of FAT!) and then started making it in to meals. I made a "chili-like" meal with corn, chili beans, hot sauce, and chopped onions. Then, I made up some mashed potatoes and made some shepherd's pie. The last of the meat I packaged to later turn in to taco's. Guess what we're having Wed, Thurs, and Fri for dinner?? YEP!
With dinner for 30 accomplished, or at least the main dishes started, I set in to make smoothie drinks for James and Wesley. I made 6 quarts of smoothie, freezing one quart and leaving the other 5 in the fridge to be drank in the next 48 hours. No worries, they WILL!
After smoothies were finished, I put together a sandwich for Kristopher, some leftover Chicken Alfredo for the girls, set up the three boys' lunch boxes with their food for tomorrow, and decided that I was finished :).
I grabbed 8 outfits from the bins of pre-set-up clothes in our closet room and laid them out on the couch in age order so everyone knows where to find theirs in the morning. Then, at 9:30... I decided it was time to crash.
Somewhere in there I found a small Hershey's bar and it called my name. LOUDLY. It's been gone for some time now too :).
Now the question becomes... how long can the kitchen counters stay clear and how long can we continue to put things back where they go?? :)
Monday, October 10, 2011
Thursday, October 06, 2011
Why does all of this matter? Because this all describes WESLEY, our son with spastic quadriplegic cerebral palsy. He's never slouched in his life. Never loosely held on to anything. He's never lifted his shoulders or dipped his head without a tightness throughout his body forcing him in to that position.
But today? He's slouching!
We began a new medication this past weekend to help with the spasticity that is caused by Wesley's CP. His neurologist looked at him and said "it won't do miracles..." to which we said "we're not looking for miracles, just quality of life and the most opportunities to succeed as we can provide him with."
Today, I would say that his reaction to the new med is certainly close to a miracle. He laid on the floor and played with toys and the tightness throughout his legs almost looked RELAXED. Sitting in his chair eating dinner he curled his arms around his chest and just sat... RELAXED. It's almost as if after 6 1/2 years of being tight all the time he had this sudden reprieve.
Don't get me wrong, he's still very tight. He's still stiff. He's nothing like a "normal" toned child would feel like. But the difference between last week and today may not be the miracle the neurologist cautioned us against expecting... but in the world of a six year old little boy with a look of relief on his face... it is just that.
Wednesday, October 05, 2011
We parked about 1/3 (roughly) of a mile from school and all got out of the van. A police car drove (on the sidewalk) right behind us the rest of the way to school, and a fire truck rode right next to us the entire way! Wesley was the only one in a stroller, and James and Micah held the sides of it. Kristopher held Lynae's hand and Aleksa and Brianna stayed close. EMMA WALKED, holding my hand, the ENTIRE way! We also had a paramedic walk with us, and he and Kristopher talked the entire way to the school. About 1/2 way to the school Lynae needed to be carried. She was falling behind, and she was tired of walking so quickly. I carried her, had Emma hold on to the stroller, and we made it a little bit further that way. Then, I caught Micah's shoe and the paramedic attempted to put it back on him... in the process knocking Micah down (accidentally) and scraping his shin a bit. Oops. I put Lynae down and got Micah's shoe on. The paramedic then asked if he could carry Lynae! He did, until we got closer to the school. Our PreK teacher came out and met us when we were in front of the school and Micah asked to walk with her. Lynae walked the rest of the way from there (we had to pass the school and then walk back to it so we'd cross at the crosswalk). Then, I walked them all right to their classrooms, got Wesley situated in his wheelchair at school, and Lynae took over the stroller for about 1/2 of the walk back to our van. Brianna, however, RAN and JUMPED the entire way back to the van. That girl has some ENERGY!!
So... what was today?? It was WALK TO SCHOOL DAY! The school has an "event" each year and all the students gather to walk together to school. Even the school buses unload and have the kids walk, and they have the police and fire escort. Since we happen to have the smallest feet that were walking to school... we brought up the caboose and had the fire truck and police car right behind us the entire way, and the paramedic was likely told to be behind the last kid to keep everyone safe and together.
It was a lot of fun, and a BEAUTIFUL morning for it! Can't say it's one we'll be repeating on a regular basis, but maybe with a bit more advance warning we may do something similar in the future just for fun. Of course, we'd have to get there quite a bit earlier :). We were "on time" this morning, but since the walk was all organized to start just before school, it was probably after 8:20 when we got to the school and it is supposed to start at 8.
We'd have to give ourselves a bit more time to go on a regular day though :)
Monday, October 03, 2011
The top question seems to be:
Some of your kids are on special diets. What do they eat, and how many different meals do you make each day?
Well... here's my attempt to answer that question :) And at the same time, to update on the kids names and ages! LOL
I'll start with the youngest and work on up.
Lynae is 2 and eats pretty much a normal diet. Because of her small size and small appetite, we supplement with some Pediasure. She's also on soy milk, though she gets other milk products (like cheese and yogurt). Straight milk upsets her stomach, though.
Micah is 5 and doesn't have any food restrictions, however he can't chew well, so he eats only soft-solids and very small pieces. His diet is mostly the consistency of spaghetti o's, though it's much more varied than that. Almost anything can get put into a blender and made to be a chunky consistency! He also is on only thickened liquids, so he can't have any liquids that haven't had thickener or a baby oatmeal or something like that added to them. If he does get thin liquid, he aspirates and often ends up with pneumonia. So... that's a biggie. With food that's not prepped correctly, he'll choke but 'recovers' well, thankfully!
James is 5 and is allergic to Casein. It's the protein in milk and makes him throw up. He just started on purees and soft solids on a very regular basis after a year of really struggling with him throwing up, finding out if he had anatomical differences inside (he doesn't!) and then learning that he is allergic to the casein. James gets most of his calories and nutrients through a liquid blended diet now, but he does eat all kinds of stuff... just in smaller quantities than 'normal'. I'll put some ingredients below that we use to make his 'smoothies' :). James needs his liquids slightly thickened to avoid choking as well as to keep it from leaking through his g-tube (which is not currently in use... he has a 'mini' button).
Brianna is 5 and eats just about everything, however she's a tiny eater as well. She probably has more freedoms in what she eats than she should, simply because there ARE so many diets going already, that it's easy to adapt stuff to make it a little more "Brianna friendly" in order to encourage her to eat more and get the much needed calories.
Wesley is 6 and loves to eat! Unfortunately, due to his spasticity it's very difficult for him to chew, so in the time that everyone else eats a full meal, Wes will eat 3 bites of a hot dog, or one chicken nugget. He now is able to self-feed!! Which is helpful and he is starting to eat a bit more that way since he can get another bite even if I'm not right there waiting to feed it to him. However, he's still very small! He gets most of his calories through a liquid blended 'smoothie' just like James. Wesley requires slightly thickened liquids or a small diameter straw for him to be able to control liquids well. He otherwise coughs and sputters, though he clears it well. We use infant oatmeal to thicken some of his drinks.
Kristopher is 7 and eats any and everything, though he does occasionally complain :).
Emma is 8 and eats very well. She will pick the vegetables out of ANY meal, no matter how mixed in they are. She also doesn't handle bread well. She'll take large bites, not chew it, and choke. When I say choke, I mean Heimlich maneuver, blind scoop, and scare you with 5 minutes of difficult breathing before we get it back up... SO, no soft bread for Emma unless it's cut into small pieces and monitored closely. She does better with 'crusty' bread or tortilla type breads. We also blend some veggies and 'sneak' them in to her meals. Adding a can of peas to a jar of spaghetti sauce, or corn to macaroni and cheese is easy if it's blended up smooth!
Aleksa is 8 and eats VERY well! She doesn't have a "stop" button yet, and will eat and eat and eat. This is where it makes things interesting with our family, since some kids we are constantly pushing food on to, and others we have to monitor. Because of Aleksa's past, she thinks that if someone else is eating and she isn't, that it is punishment. She will stand and cry, tears and all, if someone else is offered to finish the rest of their lunch after nap time and she isn't given a snack as well. Or if she finishes before others, and they get their 'seconds' ten minutes after her seconds... it's as if she's being deprived. She would literally sit at the table and eat all day every day if allowed. And drink... We recently had quite a difficult time going to my parents' church festival because people were eating in the food tent the entire time. Others were walking around with snow cones and giant lollipops. To her, she was missing out, even though we purposefully ate once we arrived so she would 'have her turn'. She literally cried the ENTIRE time we were at the festival, so anxious that everyone else was eating and she wasn't. Aleksa can eat anything, and will eat everything except has a tendency to avoid raw vegetables. We have many hurdles to jump with Aleksa in the food department, but it's because of connections, and "baggage" that she has related to food which we will need to overcome together.
And... that's our crew :)
As for the smoothies, here is one idea of what we'd put together and another set of 'substitutions' we may also use: (*Note, we make most of the smoothies dairy free so they are casein free for James, however there are some ingredients we use to occasionally make one that has dairy for Wes)
1 cup cocoanut milk
1 T cocoanut oil
4 T olive oil
2 whole bananas or 1.5 cups applesauce
1 can of green beans, peas, asparagus, carrots, zucchini, sweet potatoes, or other soft veggie
2 cups soy milk
1 cup oatmeal
We will also use whole milk yogurt, whole milk cottage cheese, and just... whole milk. I choose to use canned veggies right now because they are already soft and easily blended into a very pureed texture that will make it through the small openings in the cup/straw that the boys use. I also will substitute other fruit, such as pureed berries, or even canned fruit that was originally packed in light syrup, like peaches or pears. I started off using baby food that is already pureed for fruits and veggies, but both the cost and the annoyance of opening 6 packets of babyfood for each blender full made us decide to switch to canned veggies, at least for the time being. I also add seasoned bread crumbs (high in calories!), instant potato flakes, or butter to a smoothie for consistency, flavor, or calories.
In general, I need to make 2 blenders full each day, and generally I make them at the same time. Each of the boys takes 32 ounces of smoothie to school and we use 'leftovers' as well as fresh for dinner.
Since James cannot have Casein, he cannot have Pediasure. He also doesn't do well with the high sugar content in pre-packaged drinks, so even the soy varieties we don't buy for him. He is 100% on a blended diet with supplemental feedings to try to teach him to 'eat normally'.
Wesley, however, CAN have Pediasure, we just decided that since we were doing a blended diet for James, we wanted to do it for both of the boys that would benefit from it. Wesley does occasionally get Strawberry Pediasure, and he LIKES it, so it is almost a treat to him if I didn't make enough blended food for the day :).
There's our "dining plan"! It keeps things interesting around here for sure, but once we got in to the routine of things, it really isn't as "much" as it seems to be when it's all listed out :)