Thursday, February 10, 2011

Take a vacation from your problems . . .

Do you remember the comedy with Bill Murray and Richard Dreyfus--"What about Bob?"  Remember the advice the psychologist gives:  "take a vacation from your problems."   That's sounds good to me.  I think we all could use a vacation from our problems.  As mom's we spend so much time nurturing others that we forget to nurture ourselves.  Sometimes we even loose sight of who we are because we are so wrapped up in trying to help our children and others that we forget the things that we love, the things that make us who we are.  We start defining ourselves by WHAT we DO rather than WHO we ARE.  When we go down a road of defining ourselves by what we do--it quickly becomes depressing.  Cooking, cleaning, sorting the laundry, loading the washer, loading the drier, folding, changing a diaper, changing another diaper that exploded onto Jr's newly washing clothing and ran down the leg onto the carpet, re-loading the washer with the diarrhea soaked clothes and the vomit covered sheets, washing the stain out of the carpet,  REPEAT.   No wonder we quickly find ourselves depressed and despairing.   Even more tempting is despair in the mother of a child with chronic illness.  She consumes herself with doing all that she can to help this child, researching, praying, comforting, researching, writing letters, calling insurance companies, explaining the symptoms over and over to doctors and well meaning friends, scheduling appointments, going to appointments, fighting back the tears as her child is poked again--she is always surviving for her child, always fighting for his/her rights, all the while pushing back the guilt she feels  that she is somehow not  doing enough for him or her or the other children who have to wait while she helps the sick child who demands all her time.  What would she give to take a vacation from her problems?  What would she do to make it all disappear.   

Oh, sisters, I wish I could be there at that bedside in the hospital with you even now.  I wish I could hold your hand through that procedure that your child is facing, I wish I could wrap my arms around you and in the silence whisper, "I've been there, it's okay."  I wish I could take away your fears and worries and give you the answers that you seek.  I wish I could spare you the pain that you are feeling for your child. 

I wish I could tell you that during those times of darkness, I never wavered in my faith, I never questioned God's love, I never doubted His care for me.  But if that were true, I would have been more than human.  No, rather, it was in the darkest times that I realized I was in fact human, that I was in fact merely a woman, a woman who never felt weaker than I felt then.  It was then that I was so low, that all I could do was look up, and cry out as your little ones cry out to you--"hold me, hold me".  I wish I could say that in a shining moment God parted the sky and said "HE IS HEALED."  And everything was better for Henry.  Instead, through the unexpected, God continues to teach me to wait and trust.   

I still do not have all the answers concerning my Henry.  I don't know why he still has trouble swallowing, or why he has to drink his formula as thick as pudding to prevent it from leaking into his lungs when he swallows.  After 20 months of doing all that I can, I don't know why he is still so severely underweight.  I don't know why he can't tolerate certain foods and why the things that most people can eat wreak havoc in his gut.  I don't know why he is prone towards inflammation or if he will still need his airway surgery.  I don't have the answers and neither do the doctors--yet.

God has chosen to leave some things unanswered.  I was angry at first.  Why would he allow this to happen to me.  Hadn't I been faithful--What did I do to deserve this?  What did Henry do?  The answer dear friends--is NOTHING.  I had to ask these hard questions, and so may you.  Do not fault yourself for being human.  Do not try to be something you are not.  As women we try to be so strong, we try to keep it all together.   Every other woman is wishing you would be real, so that she can know that she is NOT ALONE, that you are human too and so is she.  She is riddled with questions and anguish and pain.  That she is trying to be the best mom possible, but sometimes she makes mistakes--sometimes she forgets to plan dinner or do the laundry or dare I say--feed the dog!  She is human and so are you.

If we define ourselves by what we DO, we will end up despairing when we, by own standards, fail to be what we think we ought to be--SUPERMOM.  Who set this standard?  And what does it even mean?  Are you seriously a better mom because your child went to school with a picture perfect outfit and braided hair?  My child went to school today with a rats nest hairdo and purple flower boots--and he is a boy! 

Truth be told:  when our lives are filled with the stresses of REAL life, such as caring for a sick child, or caring for any child for that matter--we will despair when we focus solely on the problems,  the "diagnosis,"  or lack there of. 

Jesus said "MAN SHALL NOT LIVE ON BREAD ALONE"  Those with food allergies will give a hearty amen!  But what did He mean?   Well, look at the context in Matthew 4, Jesus was being tempted by Satan.  And when did Satan come to Jesus?  When he was at His strongest?  No!  He came to tempt him after Jesus had fasted for forty days and nights; when his body and mind were weak with hunger, when he was at the point of total exhaustion.  When He would have been most prone to depression and despair.   Jesus answered, "MAN SHALL NOT LIVE ON BREAD ALONE, BUT BY EVERY WORD THAT PROCEEDS OUT OF THE MOUTH OF GOD." 

Bread is of this earth, and it gives temporary life, but in the end we are all perishing with out God.  Imagine as with FPIES, when you taste it, it is wonderful and quenches your hunger, but hours later--it causes you to wreath in pain, and then putrefies in your gut causes you nausea and then to vomit.  It never satisfies, it never nourishes, it never fills--instead it ultimately destroys.   That is what I think happens when we feed ourselves with the wisdom of this world rather than the WORDS of God.  Why settle for the bread of the earth, why do we dwell on the  temporary--when  GODS word is available to us?  WORDS OF TRUTH. WORDS OF LIFE.  So many times, instead of turning to God's word, I worry, I research, I freak out--I eat the bread and later feel so sick.  I need His WORD to survive.

This life is in our face every day, and more so all the problems of it.  It is easy to be consumed by them, so often I am.  When I constantly dwell on the negative, it sours like putrid bread in my stomach, and if left unattended long enough it will grow into bitterness.  

One verse in my Bible study spoke to me, should I say screamed out at me this week--Sisters, eat it as the GOOD bread, let it fill you, let it nourish you, let it heal your soul:

"Therefore, we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day.  For momentary, light affliction is producing for us an ETERNAL weight of glory far beyond all comparison, while we look not at the things which are seen, but the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal."  2 Corinthians 4:16-17

Don't lose heart.  Do NOT lose heart.  If I dwell only on what is happening here on earth, I will certainly lose heart, I will certainly despair.  There is more than this life, for you and your child.  This life is not the end.  There is a day coming when He, Jesus,will wipe away all the tears from our eyes.   When there will be no more pain or suffering.  This is temporary, I know it doesn't feel that way now, but what is coming is beyond all that we can imagine.  Also,  Paul says this "momentary" affliction will produce for us an ETERNAL glory, far beyond comparison.   These words come from the apostle Paul, who knew about suffering in more ways than one.  He knew what it was like to be isolated, to be misunderstood, he had faced prison and physical beatings, he knew what it was like to "despair even of life" (2 Cor 1:8) 

In God's time frame, what we are experiencing in this life is only momentary.  It is hard for us to understand, but I think it will be as though we've woken from a dream, when we wake up in heaven and realize how momentary it really was; although while we are here, this life feels like eternity.   We might not have an answer as to the WHY of our child's illness, we may never understand.  But God does tell us that the affliction or suffering we face is producing an eternal glory. What is that glory?  Is it  that others around you see what God is doing and see how He is working and they follow Him due to your response to the affliction?   Is it that as you experience these sufferings that you are changing into a more kind, compassionate person--that you now show empathy to others who have similar problems?    Had you never experienced these challenges, would you be the person you are today, or the person you are becoming?  As our children and husband watch us, will they see in fact that we are human, we do make mistakes, we do struggle, but in the end we set our eyes toward heaven and ask for God's help. 

I know it is easy to despair when your child is sick, especially if it is chronic.  Especially if there are no answers or good solutions.  If that is where you are right now, I have been there too, and it's OK to be in that place.  I want to reach into that place of isolation and emptiness and tell you, you wont have to be there forever.   God can still reach you, even in that pit of darkness. 

I can't take you on a vacation from your problems, I can only point you to the place where I turn from my problems and find hope.   That place is at the Cross, where Jesus was willing to lay His life down and suffer the worst of sufferings for me and for you.   He knows the deepest pains and hurts of our hearts.  And our Father God knows what it is to watch his only son suffer, to watch his son die a painful death.  He allowed Him to bear all our sin, He took our place, so that you and I could have the hope of eternal life, a life that is free from suffering and pain and loss--a life that we must hope for, that we must fix our eyes upon--it's coming . . .

Some practical things you can do to mentally take a vacation from your problems:
(I am not saying it is easy to do these things when you have a child/children who are ill they are just goals to work toward)
1.   Read the Bible--put encouraging verses around your house, on mirrors and random places to help you focus on the positive.
2.  Pray.  On your knees.  In the car.  while you cook, while you clean.  Just talk to God like He's your best friend--soon He will be. 
3.  Try to get out with some friends (I did this last night and it's something I haven't done for months--I laughed so hard, belly laughed--thanks girls--I needed that!)
4.  Go out with your husband--if you can't afford it  or spare a lot of time, be creative--think outside the box.  Have a friend watch your kids and just spend time at home, eating and talking and relaxing without the kids (more on how to focus on your marriage to a post to come)
5.  Do something for someone else who is in need--send a card,  call and ask how they are doing and listen to the answer,  make a meal--when you focus on someone else it gets your eyes off of your own issues for a while. 
6.  Purposefully give hugs to your children and husband--hugs make everyone feel good
7.  The next time one of your kids says "play with me," try not to say "in a minute" just surprise them by doing it--now.
8. Turn off the TV and Internet and get down on the floor and play with your kids.  Pretend to be a lion or something silly, loose yourself in their world of pretend and be someone else for a few minutes.
9.  Exercise--if you can't get out then turn on the music and see how long you can dance with your kids, they will love it and you will start laughing--laughing burns calories too!
10.   Go to bed.  Let yourself rest so you can do this again tomorrow.


Tuesday, February 8, 2011

Snow Cream--The Magical Allergy Free Treat!

I had a friend in college who was the sort of friend that only comes along once in a life time.  You know, the kind that puts others before herself, the kind of person who loved to give gifts and celebrate every occassion--the kind of person who made up holidays like "Best Friends Day" just to make you smile.  The kind of person I'd love to be for my kids if I wasn't bogged down with the realities of life.   She is the one who first introduced me to Snow Cream--a delicious frozen treat that is free, fun and located right in your back yard.  I came home from a stressful day of nursing school and had to study for an exam that night.  I thought she was joking when she said, let's make some ice cream out of snow!  Ah, yeah right.  But she ran out side and came back and whipped it up in front of me, and in her magic way, for a moment, she made me forgot the cares of the day and we laughed as we enjoyed this silly treat together.  Of course during those care-free college days, I never imagined this recipe would be so handy, fast forward into the future of a world of food intolerances. 

The very best part!  Snow cream is ALLERGY FREE and safe--unless of course you have a dog, and in that case carefully examine your snow!  My kids absolutely love this, and they can help make it . Why don't you send yours outside today with a pot to collect the snow, tell them you have a suprise that you are going to make.  Then  you can all sit down together and enjoy a perfectly delicious and care-free treat, and for a moment, you can forget about the worries of the day and just enjoy each other.

Collect as much snow as needed to feed your family.  I used about 6 cups of snow.  Here's the recipe, but feel free to tweak it to your delight!  Have fun and enjoy the snow!

Snow Cream

6 Cups of snow
1 Cup of  sugar (try warm honey or agave nectar if you like) add more sugar to taste
Start with about 1/2 cup of milk ( coconut is FABULOUS if you can tolerate, rice, almond or hemp)--add more to make the consistency you desire
2 tsp natural vanilla
Mix together with a spoon until soft
Add chocolate sauce, fruit, cookies, a dab of coffee, or just eat plain--it's yummy!

Monday, February 7, 2011

Home Made Baby Food--prep work for Complete Formula

Again, I am re posting this prior post for making your own baby food.  This is the prep work needed to make your own complete Formula.  

I head to the store each week to buy my fresh ingredients. The original COMPLETE FORMULA recipe calls for the jar puree baby food. I have modified this to use REAL food because I feel like it is fresher and jarred baby food can be contaminated with wheat or other foods that are not tolerated.  I used to use baby food if I didn't have the time or ran out of prepared food.   If your child has a G-tube but does not have food in tolerances that you can do the same.  Another other tricks if you don't have a lot of time, is to by frozen veggies that you can steam and and then puree.

Whenever there is organic meat on sale, I buy some to make for dinner and I buy an extra pound to cook for Henry. I usually use Salmon, Lamb, Bison, and chicken. Salmon has the omega oils, which have so many wonderful benefits, including reducing of inflammation in the body.  This is why, I always include a pediatric dose of liquid omega oil in my feed (you can get this at vitamin cottage in the children's section).  Lamb and Bison are supposed to have the highest iron content of meat, and since Henry was once anemic, I like to alternate those meats.    Most recently, with Henry's diagnosis of Food Protein Induced Enterocolitis Syndrome (FPIES) I have only been using chicken and turkey because I am trialing solid foods right now. 

I cook the meats the same way I would for my family except I exclude the spices. Then I puree the meat in the food processor and usually use the broth left in the pan to dilute it. This way, I can puree it to a very thin texture. After much trial and error, I have found that this step is really important if you are making G-tube feeds so that your feed is thin enough that it wont get stuck in the G-tube. If needed, you can add water, juice or milk to thin the meats more.  I then take the pureed meats and veggies and pour them  into individual ice trays.  Freeze overnight and then place the frozen different meats and veggies in labeled bags.  I usually try to do the ice trays after I go grocery shopping or whenever I have extra meat and vegetables on hand.  This way, it is so easy to just grab a few ice cubes of meat and veggies, thaw and then make your feed or formula! Ladies, you can do this step to make your own baby food as well. Just take your left over potatoes or meat and make your ice cube trays at night and before you know it you will have a whole stash of fresh baby food. With organic baby food being 0.69 to 0.89 cents per jar, you will SAVE A TON of money--believe me it is worth it, plus it is SO MUCH healthier for your baby, also you can be sure that there are no additives, dyes, preservatives or allergens. You can use whatever veggies you'd like when you make the formula, however I typically always add half an avocado for extra calories and healthy fats.   Yams and Sweet potatoes are the quickest baby vegetable to make if you are low on your pre-made veggies.  Just wrap a sweet potato in plastic wrap and put it in the microwave for about 5 minutes (more if it's a big one) and WAH LAH--smash it up and instant baby food!

So that's the prep work so you have some fresh meats and veggies frozen and ready to go.  Check out the Miracle Grow link for making your own Complete Formula. 

My Miracle Grow Formula

I wanted to take a moment to re post, what I call my MIRACLE grow formula for Henry.  Even the doctors are amazed at how much this has helped Henry and said that I should "bottle" it.  I wont claim that your underweight child will suddenly pork out to sumo wrestler--however, this formula has done much more for my son than add weight--I truly believe it has given him the nutrition he needs to thrive--all though in medical terms he is still considered "failure to thrive."  Failure to thrive is such a broad term.  Doctor's use it to describe a child who has "fallen off" their normal growth curve.  However, as a pediatric nurse myself, I believe there is a HUGE difference between a thriving child and a child who is FAILING to thrive.  So I would venture to say that my little Henry is THRIVING, and I believe that nutrition is the reason for this.  Is Henry small?  Yes he is, but since I started him on this feed, he is no longer pale and tired--he is a happy, climbing, running, baby boy with a beautiful skin tone, far from the way he appeared when he was anemic and on formula. 

I hope that others can tweak this formula to meet their child's needs.  This formula is NOT intended for infants but is it is considered a COMPLETE FORMULA for children who can not eat, and Henry survived on this formula ALONE for several months when he was not eating any solid food.  Of course if you have to eliminate items it would not be nutritionally complete so talk with your pediatrician or GI doctor if you are unsure. 

To this day, Henry does not drink anything else but this formula.  I do not give him plain water, juice or milk to drink, as our doctor said that we should ONLY give him this to drink so he is always getting extra calories.  I attempted to put him on Neocate, but his stomach blew up like a balloon, he had horrible diarrhea and rashes, and he was refluxing and coughing and I feared all his respiratory problems would return if I kept him on something he could not tolerate.    That being said, I know some people have to use Neocate, but I think due to Henry's issues with corn, he just could not handle it.  If you have any questions for me please don't hesitate to ask.  I hope this can help others as it has been the life saving food for my son!

Approximately 1000 cal G-tube feed, or Infant formula (33 cal per oz)

2 cups milk (soy, hemp, coconut, almond)--typically rice milk is too low in calories, but you could use it for a short time until you trial other milks.

1 cup juice (make sure you buy REAL 100 % fruit juice. Read the labels because some are all sugar and only 15% juice)--or make your own if you are that savy!

3 tablespoons of sugar (honey, white, or black strap molasses) I use the black strap because it is high in iron and calcium
3 tablespoons of oil ( rotate olive, or safflower)
6 tablespoons of infant rice or oat cereal (store bought can be contaminated with other allergens so I make my own rice, you can try Qinoa, millet, gluten free oats.  If your child cannot tolerate grains you can try equal amounts of a starchy food such as yams or potatoes)

2 2.5 oz jars of baby food meat (or about 2 ice cubes of any homeade meat or fish--rotate for variety)

2 4oz jars of baby food veggies (or about 4 ice cubes of  homade prepared veggies rotate for variety)
I add half an avacado for extra calories and  good fats

liquid baby vitamin supplement (dose per baby's doctor or per weight specifications on bottle read carefully for allergens)

liquid baby omega oil supplement (cod liver oil is the best source, dose per baby's weight/age specifications on bottle) be careful if your child has intolerance to fish--you could use flax seed oil if you know your child can tolerate flax--but look for gluten free

Optional secret ingredients (I believe these do wonders to heal the gut and boost the immune system)

pro biotic powder (obtain from pediatrician--dose per instructions.  Get one that is milk free if needed)

Braggs Apple cider vinegar (2 tsp)

for premaking meat and veggies, check out link to home made baby food

For those of you who have to thicken your feeds due to swallowing issues or having a laryngeal cleft--I use xanthum gum (same ingredient in the product SIMPLY THICK)--but it is a derivative of corn.  Other option would be to use Guar Gum which is derived from beans.  Start with small amounts and increase until you get the thickness desired--a little goes a long way so be careful--make sure you blend for about a minute to get the desired thickness.


Disclaimer: This advice is not medical in nature and is not intended to replace the advice of your doctor. All children who are failure to thrive or have swallowing problems should be followed closely by a doctor and may need to be evaluated by an occupational therapist of speech pathologist.