The LORD said to him, "Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the LORD ? ~Exodus 4:11~
On this journey of motherhood the Lord has given to me, I will stumble, I will fall, only the Lord may lift me up in my inequities.
~Let your unfailing love surround us, Lord, for our hope is in you alone. ~Psalm 33:22
Looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.
Consider him who endured from sinners such hostility against himself, so that you may not grow weary or fainthearted.
~Hebrews 12: 2-3~
I was deeply encouraged today by a blog I came across that had posted a video from the HSLDA .
If you are a homeschooler, do yourself a favor today and watch this.
Thank you to "A Wise Woman Builds Her Home" Blog for sharing this.
Praise God for giving me the opportunity to let my children learn beyond the books...
We have been on an early American history study. I am thoroughly enjoying seeing my children make Viking gear and dress up as American Indians.
Annie was none other than the great princess Pocahontas. She has been enthralled with her ever since she learned that "she was really real?!?!"
My dear sweet Ellie was an Indian Princess with an Ellie flair.
Roman was a great Indian Chief. His dress up style is fantastic!
Have you ever had a burst of goodness so yummy you just want to sit down and call your search for that fantastic recipe done? It only happens once in a blue moon but fried plantains are one of those Nummer moments. I could completely exchange tortilla or corn chips for these. Dang, that's good, right? Right.
Lily says they taste like "a yummy fried potato". Naturally my mind goes to tator tots. This means I will be trying these with fry sauce next.
Roman says they taste like "nothing I've ever tasted but YUM!".
So there you have it; Kids approve and so do I. Need you more?
Here's the way to roll...
As many plantains as you would like to fry. (Looks like a green banana in produce)
Olive oil for frying (enough to fry banana slice thickness)
Salt.
Peel and slice those bad boys....
Is it evil that I secretly want to try to fry bananas then sprinkle them with brown sugar? I'll let you know if I work up the courage to be that bad.
Now throw em' in some hot oil...
Fry baby, fry!
Fry em' till they're nice and brown on both sides. You'll have to flip them. How brown is up to you.
Once they're where you think they look nummers pull em' out on a paper plate, or a plate with a paper towels on it to soak up the drippy oil.
Now salt em while they're hot and greasy... Mmm Hmmm.
Next you smash em' down. Not too much. Just a little flattened. Like this..
I use a little gravy ladle.
Now this is the part you DON'T want to miss.
Are you ready to pay attention?
Dip those bad boys in some SALSA. Oh yes, SALSA!
And if you REALLY want to do it right, you know, one of those by the book types; dip em' in some Mango Salsa from Costco.
I assure you this bite I'm holding went directly to my mouth after the picture was taken.
It was heaven.
There you have it. Fried Plantains. Take something pure fry it, salt it, and dip it. It's the American way.
We recently had a run in with a month long diarrhea adventure. Oh boy. No one else got sick, but all of a sudden we're in the middle diaper blow out city! This made us think one of two things was going on.
1.) Gussy was having issues with dairy.
2.) We have some bacteria problems.
So we went for it. We switched his milk to Almond milk first. Better, but not gone. Hmmmmmm
We use to make water Kefir and give it to him but laziness took over and I quit making it. I will make it again. When I do, I will blog about so you non-lazy folks can get in on the action.
In my laziness I started buying Kombucha instead. It's expensive ($2.50- $3.50 a bottle), but it has 2.2 billion fantastic little organisms per bottle. All of my children love it, especially the Super Berry one by Brew Dr. You can buy it at most health food stores. Locally it is available at Yoke's as well.
I am happy to report that Gussy is now back to his normal self. Thank you Brew Dr.! We are going to start making Kombucha ourselves next month. Don't worry, I'll blog on that too.
Here's what we do...
Kombucha is fizzy. Fizzy+ Gussy tummy= No.
Easy peazy resolution.
1.) Take off the lid.
2.) Put it in your fridge over night.
3.) Stir it up a bit.
Voila'! Fizzy reduction success.
We give Gussy about 2oz. per day. Some times in place of a water bolus, sometimes over several flushes throughout the day.
Tubies Unite! Let's face it, information isn't exactly common place when it comes to feeding your G-Tube fed child. Yes, there is information out there but it takes a whole lot of research to figure everything out. So here we have it! "Tubies Unite" will be my new series. Under this tag I will share recipes, ideas, and anything else that I come across. So let's jump right in shall we?
Upset tummies; If only we knew before having a CP child what that really meant. Throwing up at every meal. Explosive diapers from invasive surgeries. REFLUX, REFLUX, REFLUX. OH MY! Fact; Our babies tend to have tum-tum issues.
My new favorite flush...
Those of us in the tubie world know what a flush is, but for the rest of you reading for information's sake, it is a flush of water or other liquid to clear food from the G-tube after eating via G-tube.
Our Dietician and I came up with a little tea formula that has really helped with the tum-tum digestion.
Here's how you do it...
A Couple T. each of;
Coriander seed
Fennel seed
Tumeric
& Anice
1 Mint Tea Bag.
1 Quart of water
Boil all down for a while to really steep it well.
Strain it into jar or whatever you will be keeping it in.
Walla. Tummy Flush. Store in the refrigerator and flush as normal.
What to do with the strained content...
Put it in a jar in the refrigerator until the next time you make food for your little one. If you make rice, or any other grain, use it to season the rice while cooking.
There you have it. Upset Tum-tum flush.
Therefore encourage one another and build one another up, just as you are doing.
She selects wool and flax and works with eager hands.She is like the merchant ships, bringing her food from afar.She gets up while it is still night; she provides food for her family and portions for her female servants.
Proverbs 31:13-15
After so much time away from blogging for fun, I've decided to come back and try again. I was doing a series on "Becoming a Proverbs 31 Woman". I really enjoyed how this study and writing time drew me closer to the Lord. So, I've decided to come back to it, but with a twist. Life is a little different for me these days. Serving my husband; serving my family; these things look different today then they did a couple of years ago. I hope it will be a blessing to some. My hope is to draw myself closer to the Lord and remember why I am persevering through whatever the Lord has planned for my life, whether it is my plan or not.
As I read through this section of Proverbs 31 it seemed appropriate to share what this looks like for me. Feeding Gussy food that is nutritious and wholesome is no easy chore. It is important to us that we seek out ways to build healthy bodies for our children. Many of us have seen the affect of growing up on processed food. Gussy had a hard enough start. We felt in necessary to give him the best nutrition to go forward.
That being said, today I am going to share how to choose a blenderized diet for your tube fed child. As always this isn't medical advice and you should seek the advice of your dietician and doctor. This works well for us.
First let's talk calories.
There is a formula to figuring out how many calories your child is getting each day. This is very important. Tube fed children don't just eat what they want leaving you to assume they are getting what they need. You have to be able to calculate what they are getting and adjust it according to their growth and size.
When coming up with recipes this formula is a life saver!
Here's how you do it...
Make your recipe (I'll talk more about the recipe a little later).
As you make it, Google each item to see how many calories are in each individual item.
Blend your recipe.
Measure how many ounces you have AFTER blending.
Now you take your TOTAL calories (All item's calories added together) and divide that number by your total number of ounces. This will tell you how many calories per ounce of food.
Next you take that number and times it by your child's total daily volume.
This will give you your child's total daily calories.
An example of this...
Total Calories of Recipe: 4211
Divide by total volume: 144 ounces
4211/ 144= 29.24 Calories per ounce.
Our current total daily volume: 33 ounces.
29.24 x 33= 964.92 Calories Daily.
That's it. Simple to do if you know how.
What to feed your tubie?
This is a list of a good ratio of the food groups. We use this for our basic outline.
Grains: 1 cup (We use quinoa or brown rice mostly)
Veggies: 1 cup (Good variety of fresh veggies)
Fruits: 1 cup (Same as vegetables. We use a lot of berries because of studies done showing the benefit of berries and neurotransmitters.)
Milk or milk substitute: 2 cups. ( We use yogurt for the probiotics, for a milk substitute Almond milk is good but we add extra protein in the form of eggs. Eggs contain choline another brain go getter.)
Meat, beans, nuts: 2 ounces of meat or fish, 2 eggs, 2 T. peanut butter, 1 ounce nuts, or 1/4 cup legumes. ( We use Salmon, eggs, and chicken often)
Fats: 2 T. Oil. We use Coconut oil and Olive oil.
Adding other stuff for health and calories is great. This is just a basic outline of the food groups.
Leftovers of all ingredients can be bagged and frozen. We have actually cut down on waste a TON because we bag and freeze leftovers for Gussy's recipes.
A High Calorie Recipe...
This is a high calorie recipe that I make to last a little over 4 days. There is research all over the internet about the health benefits of different types of foods. We choose carefully for maximum health.
4211 divided by total volume- 144 oz. = 29.24 calories per ounce.
Total daily volume as of January 2013= 33 oz.
Daily total= 965.02 calories.
Good growth. 4.3 days worth.
Let's talk blending...
A high powered commercial blender is a MUST. You just can't do it without. They are expensive! I don't mean a little expensive, I mean Ex-Pen-Sive!! Although, I am what some call "frugal". Maybe it won't shock you as much as me. Now, that being said, the good folks at Vitamix and BlendTec generously offer a medical discount for Tube Fed Children. It's a hefty discount and well worth the time to ask your doctor for a note. We LOVE our Vitamix!
Time...
Yes, it takes some time and effort. Sit down school work is sparse on food making day. Thankfully though, learning comes in all different shapes.
Bread making being one...
Juuuust the right measurement.
Cooking, baking, chopping, and serving each other once a week or so keeps everyone in the house from going crazy...
Then again, maybe not everyone.
But this little guy's tummy says...
Num Num!!
She selects wool and flax and works with eager hands.She is like the merchant ships, bringing her food from afar.She gets up while it is still night; she provides food for her family and portions for her female servants.
Proverbs 31:13-15
No female servants here but by golly I'm getting up while it's still dark and EVERYONE in my family is being provided real food. I'll rest in that today.
If you haven't seen the pattern yet, let me enlighten you. I have started nearly every post since Gussy's homecoming with.... Soooorry. Yeah, I'm the worst blogger around. To be a blogger I believe writing is necessary. Do correct me if I am wrong there. I would love to hear it. If it makes you feel better, I have some fantastic pictures to share! All sorts of news to share. Some news was great, some was hard to swallow. None the less, I have news!
On that note, to start us off on a good note again; here, look into this light (Summer video)
Oh, how cute my little Gussy was swimming away like a big boy at the kid pool! He's scowling but I promise it's the sun in his eyes. He LOVED being at the pool! All of the children did! It was a much needed relief from our winter of total lock down!
So let's start, shall we? First the blessings. Oh, the blessings!! I can't say I'm to that little happy place that special needs parents seem to get to, that says "I wouldn't have in any other way". I am, however, so, so, so, so, so, so, so, so, so ,so blessed by the joy that Augustus brings this family! I love my sweet baby boy just the way he is, but I have to tell ya, I would absolutely change his injury status. God knows better than I. Praise Him for that! I have fully come to accept what is. I've moved forward with joy that my baby boy is here, alive, and still making progress. Praise Jesus! I would still change it all.
I can't even come close to expressing the toll it has on a person to watch your child, whom you fight so hard for, love so much, and cherish as the heritage from the Lord he is, fight to survive on the bad days. I wish I was a writer of that skill, but unfortunately, I know I am not. Simply put, the toll reaches far. My health is not what it was by any stretch (Blog for another day). Emotionally, worry is part of my every day life. I hate it, but truth is truth. I would love it if you all would lift that sin in prayer for me. I can't seem to utter the words from my own lips. So here I am, asking you, my fellow followers of the great I Am, to bear this burden for me.
Bear you one another's burdens, and so fulfill the law of Christ. Galations 6:2... See? You're bound to it. Ha!
Wasn't I starting with the blessings? YES! Blessings!! Oh the blessings!
HAM!!
Gussy isn't just giving little smiles these days. He's a HAM!!! Oh my, how he loves to ham it up! He has a FANTASTIC sense of humor! He loves rough housing! He's laid back! He's always happy! He fits perfectly in the Tannehill Home!
HOME!
We have a home! Yes! The Lord has blessed us with our very own home! He blessed us with wonderful temporary housing via our wonderful church. Now, He has blessed us with a home to call our own! Praise Jesus!!! We even get out to mow the law sometimes!
I know, I know, he's cute. Gussy too ;)
ONE!
Gussy made it to his first birthday with a big ol' Hallelujah! And ya know what? He tasted cake just like the rest of the little one year olds running around. And? He LIKED IT!! Yes, he liked it! Mmmmm Hmmmm!! He even got to play in some spaghetti. Maybe it wasn't the ol' 1 year old spaghetti face shot, but by golly, he had fun!
PROOF!!
We've continued to be blessed by caring people. We were blessed with an IPad by a sweet family that just wanted to bless us to bless us! It has been AMAZING, AMAZING, AMAZING!! It proved things that we suspected but now we have PROOF! HA! Take that!!! PROOF that Gussy can pick his family members out when asked! In other words, he can follow instruction appropriately for his age!! PROOF that Gussy Hears!!!!! PROOF that Gussy sees well! PROOF, PROOF, PROOF!!! HA. Ha. Ha.! Take *that* again!
And Just a little tidbit of information for all you "Nay Sayers" out there. He didn't hear, and now he does. How do I know? Watch this little video of Gussy getting his hearing aids....
This was taken the day he heard Mama's voice for the first time. He was in SHOCK and WONDER! My baby boy had very significant hearing loss. Period. Now, He hears perfectly! Just ask anyone in the house who has tried to sneak past the sleeping baby. It does NOT happen! Healing. Chalk up to what you will, but me? Gussy? Gussy's angel? We know better.
Brotherly Love!!! Oh how my baby boys love each other! Bef Frens y'all! Bef Frens!
All the children are fantastic with Gussy. Nothing weird there! That is a HUGE blessing! HUGE! Lily can change an oxygen tank, do a tube feeding from start to finish, and knows exactly what to do if he starts droppin' sats and choking. She can read his monitor and knows what each number means, where it should be, and where it should not be. How's that for homeschooling, huh? God has blessed me with an oldest that is incredibly intelligent and has a heart of service. This is the only reason I shower. I am so proud of the way my family has pulled through tragedy and taken up the task given them. They are my best blessing. And? They're all a bunch of screw balls that are fantastic to be around!
Dancing with sissy to some great tunes!
We finally got hooked up with a really great neurologist. He knows his stuff and is a leading expert in kiddos just like Augustus. As a matter of fact, he's one of the top in the whole country. His name is Dr. Stephen Glass. He has finally given us a diagnosis that fits every aspect of Augustus. Extra-pyramidal Cerebral Palsy. We had Spastic Quadriplegic CP. That did not fit. Gussy isn't spastic all of the time. He changes. It is a rarer type. 15-20% of CP kids have this type, if I remember correctly. It means some really fantastic things and it means some harder to swallow things.
Fantastic, cause you know, I like startin' on good stuff....
His cognitive ability is there!! Thank you Lord Jesus!! That is *the* thing we asked of God in those first few days; he would survive, know how very much he is loved, and be happy. If he can do nothing for himself the rest of his life, please, dear Lord, let him be there cognitively. We already felt he was there thinking wise. Turns out children with this kind of CP generally are there cognitively.
This brought another concern to mind that I brought up with his Doctor. It sounds awfully frustrating to know what you want, think like any other 18 month old, but not be able to make your body cooperate. He said that is the real kicker. In 30 some odd years of practicing and treating children with EPCP he has yet to see a child that is not the happiest child around. Also, a huge sense of empathy. It was like this man, who had just met Augustus, knew everything there was to know about him. Through it all, Gussy is the happiest kid around. He loves life. He smiles constantly! Happiness radiates off of him. And? Empathy is something that I had discussed with a different doctor. He is VERY concerned with anyone's pain or tears. He goes from big, hard, spastic movements to soft, gentle, stroking with anyone that is hurt or crying. If I am crying (not that I do...ever), he stops pulling my hair (his favorite), and gently rubs my face.
Turns out there is something that happens chemically in the brain that causes this in children with this type of injury.
Now, call me crazy (others do), but it sure does seem like God knows what He is doing, huh? Think about it. He has major gross motor skill issues, we believe he's all there cognitively, and he happens to have a chemical reaction in the brain that makes him perfectly fine with it. He sees the beauty of the world, unlike the ugliness that most of us notice. Have I mentioned he's a hero of mine?
What's the bad that comes with it? There always is, isn't there? (Is that really my outlook now? When did this happen? Ooooooh yeah).
Gross Motor skills are not common of this EPCP. Balance is a major issue. Talking takes some MAJOR gross motor skills. So there it is. One dream handed to me with a big pretty bow and one dream smashed with an anvil. I still hold onto the hope that like Wile E. Coyote when an anvil hits him, my dream will pop back up all rubbery and new like in the form of a walking, talking little boy. If not. I stand ready. God has plans. I KNOW mine suck in comparison. Rest in that.
On to fundraising... We have been blessed with $2500! I have not updated his thermometer but it's there. Praise God huh?! His Neurologist thinks our best effort is put into feeding therapy and adaptive equipment and devices. I agree at this point. We purchased that fancy (over priced!) Bumbo thinkgy over there. BEST PURCHASE EVER!!! Life changing for him!!! He can sit on the floor with brother and sisters seeing things from his level!! HIS level! It was worth every single penny, even if it was a LOT of pennies! Support is absolutely key for Gussy! Feeding therapy is next on the list. We have enough raised now to do this therapy. In other words, I am going to stop fundraising for now. I praise God for the love and generosity of every. single. one. of. you!!! We may still pursue an intensive physical therapy at some point but feeding is #1 priority right now. His Doctor believes he can learn to eat. If there is ever a major emergency that leaves us without power or a g-tube, Gussy can starve to death. I know that is harshly put, but we must face facts. Feeding therapy is VERY important. He needs to learn to eat.
The good and bad news? Good, one of *the* best feeding therapists in the nation is in Kent WASHINTON! KENT!! She has an extremely high success rate. Good news? We have enough funds raised to do it now!! Bad news? She's in Kent, Washington. Yes, I said that was good news didn't I? For success he needs to go 1-2 days per WEEK. That is more than hard for our homeschooling family of 5 young children. It is HAAAAAARD! So here goes.... Please pray that God will guide us in wisdom to figure out how to make this possible. Resources locally are non-existent. If Gussy is going to learn to eat, it's going to be in Kent. 3 1/2 hours away Kent.
One last prayer request. Studies show that children who do not sit unassited by 2 years of age have a much slimmer chance of walking. It's just a silly study but ya know, it sure would boost my spirits if Gussy learned to sit up by himself by 2... Six months to go. There you have it. Our very long Gussy update.
My dear sweet Ellie was an Indian Princess with an Ellie flair. 
