Update on my Little Man!

We have come such a long way since the day our Little Man was born.  We all know the battle we were going through with him virtually his whole life.  First it was his PWS, the possible sturge weber, the scary seizure "watch", the constant pain and crying, the acid reflux, and the asthma; and then the  diagnoses that changed everything   My little man has celiac disease and this has changed our lives forever.  No longer is it easy to go to someone's house for dinner, have a play date, or even go out to eat with friends and not have to think about the gluten.  Gluten is all around us and this stuff is deadly for my son.  Our whole family has gone gluten free to protect my little man.  Celiac is a genetic autoimmune disorder.  There is a very high chance that SuperDaddy or I carry this disorder.  We are gluten free and at least SuperDaddy has reacted to gluten.  So we will continue to keep all of us gluten free.
Little Man has been doing extremely well these days.  He is happy, full of smiles, walks, runs, and loves to play with his Thomas the Train RC car.  He is sleeping very well at night in his crib from 6pm to 7am.  My son is a completely different boy without gluten.  His asthma is doing very well.  He only needs the minimum amount of medication daily right now.  His acid reflux is gone as far as we know it.  He has been off of that medication for over a week and doing wonderful!  My little Man is 15 months old and I am one proud mommy!  I was able to nurse him with God's help until 15 months.  That was my goal after my daughter stopped on her own at only 10 months.  Little Man is now happily using a sippy cup and drinking almond milk :)

Here is a happy picture of my little man...

And then this is where I ask for prayer.  My little man is doing exceptionally well in all areas except his growth.  Once we went gluten free his weight spiked up to the 40% back in september.  We are now in February, 5 months later; and my boy is still has not gained weight, he has fallen off the growth chart.  He grew 1 cm and has lost roughly 8 oz in weight.  The doctors are suspecting another problem going on.  We are seeing multiple doctors to try to find answers.  Poor Little Man has had too many pokes with needles that this mommy cares to count.  Please pray with us to find what is causing my baby not to grow.  If he was just a small boy, we wouldn't be concerned.  Please understand that his size does not matter.  What matters is that my boy isn't growing at all!  He has been labeled failure to thrive.  Please continue to pray for the doctor's wisdom to determine the cause behind this.  But like I stated earlier, look at that boy,  he is so happy, content, and growing intellectually in leaps and bounds!!!  The doctors said that they expect him to continue to grow intellectually because when something isn't right, the body feeds the brain first, when that fails, "they become very concerned".  So thankfully, my Little Man is still growing intellectually!!!!
So please don't worry about our Little Man, we trust him to Our Lord and Savior !  Please pray for his growth!!!!

Gluten Free Salisbury Steak

I have been wanting salisbury steak for some reason lately.  So I looked it up and sure enough...GLUTEN was present in the recipe.  So I decided to take the recipe, modify it, and make my own fabulous salisbury steak!  It was delicious!!  Here is the recipe for those interested.

First I have to take you to a separate recipe as a base.  Us gluten free folks cannot use condensed cream of whatever soups.  So a wonderful friend of mine shared this recipe, click here,  with me to make cream of chicken base soup (S.O.S).  ( I use this for any recipe that calls for any kind of cream of soup)

So now here is my recipe for GF Salisbury Steak

"Condensed" French onion soup
1 can equivalent of S.O.S
1 packet Simply Organic Gluten free brown gravy packet
1 tlbs brown sugar
2/3 cup Gluten free beef broth
1 tsp worcestershire sauce
1 tsp salt
1 tsp gluten free soy sauce


2 lbs grass fed ground beef
1/2 dry gluten free bread crumbs
1 egg ( I use egg replacer, because we are also egg free)
1/4 tsp salt
1/8 tsp pepper
1 tbls tapioca flour
1/3 cup ketchup
1/2 cup water
1 tbls worcestershire sauce
1 1/2 tsp mustard


Directions

1. In a large bowl, misx together 1/3 cup of the french onion soup with ground beef, bread crumbs, egg reaplacer, salt, and black pepper.  Shape into oval patties.

2. In a large skillet over medium-high heat, brown both sides of patties.  Pour off excess fat.  (With grass fed beef, we had no excess fat in the pan at all)

3. In a small bowl, blend tapioca flour and remaining soup until smooth.  Mix in Ketchup, water, worcestershire sauce and mustard.  Place all patties in a greased 9X13 baking pan and pour this sauce of it.  Bake at 350 degrees until hot and bubbly. I then turned by oven up to 425 and baked for an additional 10 minutes to add some caramelizing edges.


This was awesome!!  I didn't have any potatoes on hand, but I reccomend making mashed potatoes and using the gravy for the mashed potatoes.  I would also suggest adding mushrooms to the sauce.  That just sounds very yummy to me!

I hope you enjoy!  We certainly did.  My two very picky children ages 2 and 1 loved it! And we can barely get them to eat meat of any kind!

Mommyhood...

In a spiritual sense my identity is found in Christ. Christ saved me and when I accepted the Truth of the Gospel my identity was transformed.  2 Corinthians 5:17 Therefore, if anyone is in Christ, the new creation has come.  The old has gone, the new is here!  I am incredibly thankful and amazed at how God works in our lives. However, being a woman;  my Identity is also found in my home and my family.  Similar to how a man finds his self or Identity in his career and how he provides for the Family.     My career is my mommyhood.  I take pleasure in my calling to be a faithful, submissive, and respectful wife; and a loving, kind, compassionate mommy. This being said, I'm a little depressed or sad today.  My family is "off balance" right now.  May it be from a year of chaos with my son?  An emotional rollar coaster regarding a special "extended" family member that started in May? (of which is confidential so I cannot share it with you all) Many sleepless nights?  My little girl growing up and not wanting to give up some "baby items?"  The time-change throwing off the family's sleep schedule that was already not good? Or am I just burnt out and have I lost my sense of intuition to figure out what is going on with my family? Whatever the case may be, I'm struggling today with it.  I want to fix it.  God please help our family get back on track.  May we look to you for all our needs and desires.  Something is off balance, please give us the direction and wisdom to get back on track.  Thank you for saving me and thank you for the cross, In Jesus Name...Amen.

Psalm 25

Of David.

1 In you, Lord my God,

    I put my trust.

2 I trust in you;

    do not let me be put to shame,

    nor let my enemies triumph over me.

3 No one who hopes in you

    will ever be put to shame,

but shame will come on those

    who are treacherous without cause.

4 Show me your ways, Lord,

    teach me your paths.

5 Guide me in your truth and teach me,

    for you are God my Savior,

    and my hope is in you all day long.

6 Remember, Lord, your great mercy and love,

    for they are from of old.

7 Do not remember the sins of my youth

    and my rebellious ways;

according to your love remember me,

    for you, Lord, are good.

8 Good and upright is the Lord;

    therefore he instructs sinners in his ways.

9 He guides the humble in what is right

    and teaches them his way.

10 All the ways of the Lord are loving and faithful

    toward those who keep the demands of his covenant.

11 For the sake of your name, Lord,

    forgive my iniquity, though it is great.

12 Who, then, are those who fear the Lord?

    He will instruct them in the ways they should choose.

13 They will spend their days in prosperity,

    and their descendants will inherit the land.

14 The Lord confides in those who fear him;

    he makes his covenant known to them.

15 My eyes are ever on the Lord,

    for only he will release my feet from the snare.

16 Turn to me and be gracious to me,

    for I am lonely and afflicted.

17 Relieve the troubles of my heart

    and free me from my anguish.

18 Look on my affliction and my distress

    and take away all my sins.

19 See how numerous are my enemies

    and how fiercely they hate me!

20 Guard my life and rescue me;

    do not let me be put to shame,

    for I take refuge in you.

21 May integrity and uprightness protect me,

    because my hope, Lord, is in you.

22 Deliver Israel, O God,

    from all their troubles!

Why am I ashamed to be called an American?

“I pledge allegiance to the flag of the United States of America and to the Republic for which it stands, one nation Under God, indivisible, with Liberty and Justice for all."

                                                 ~ The United States Pledge of Allegiance

The United States of America was founded upon christian principles of which I fully stand behind.  This country was and  is one nation UNDER GOD.  No laws or presidents can change that fact. For  years now, people have tried to remove God from their lives and this country. President Barrack Obama is just one of those people.  He is supported by 50% of our American population and this saddens me.  It doesn't matter how many votes this man gets or how many of us support his dream for America.  The bottom line lies in the Truth. No matter how much of the "majority" of mankind votes on changing something that is "bad", no matter how many people want to turn the bad thing into a "socially good" thing, they can't truly change what is "Right and Wrong;" that was "set in stone" long ago by our Creator, God Himself.  The bible clearly states the positions of these matters. 

Abortion is by definition, "The deliberate termination of a human pregnancy."  Human pregnancy is defined as  the carrying of one or more offspring, known as a fetus or embryo, inside the womb of a female.  A fetus is defined as an unborn human baby.  So by definition alone; abortion is deliberately terminating the life of a human baby (regardless of why or how the pregnancy came to be).  So then I ask, what is murder?  Murder is the unlawful taking of someone's else's life.  The Christian Apologetics& Research Ministry wrote a great article defending the unborn.  I invite you to go read it, click here. 

Genesis 9:6 states "Whoever sheds man’s blood, By man his blood shall be shed. My favorite verse which portrays and confirms that fact the unborn babies are living human beings is Exodus 21:22-23  “If men struggle with each other and strike a woman with child so that she gives birth prematurely, yet there is no injury, he shall surely be fined as the woman’s husband may demand of him, and he shall pay as the judges decide. “But if there is any further injury, then you shall appoint as a penalty life for life.  Since abortion is murdering a innocent life, abortion is morally wrong.  I will not support, vote, or stand behind a president that willfully condones the mass murdering of these innocent lives.

This brings me to my second point, what is marriage in God's eyes?  In Matthew 19:4-5, Jesus responds to the Pharisees asking Him about divorce.  Not only did Jesus answer the Pharisees' question, he defined marriage as being between one man and one woman.   Matthew 19:1-6 reads,  "When Jesus had finished these words, He departed from Galilee and came into the region of Judea beyond the Jordan; and large crowds followed Him, and He healed them there.  Some Pharisees came to Jesus, testing Him and asking, “Is it lawful for a man to divorce his wife for any reason at all?”

And He answered and said, “Have you not read that He who created them from the beginning MADE THEM MALE AND FEMALE, And said, ‘FOR THIS REASON A MAN SHALL LEAVE HIS FATHER AND MOTHER AND BE JOINED TO HIS WIFE, AND THE TWO SHALL BECOME ONE FLESH’? “So they are no longer two, but one flesh. What therefore God has joined together, let no man separate.”  One may ask, "who gives Jesus the authority to define how God sees Marriage?  Well, my friend, I'm glad you asked. Jesus is God's Son in that He was conceived in Mary by the Holy Spirit. Luke 1:35 declares, “The angel answered, 'The Holy Spirit will come upon you, and the power of the Most High will overshadow you. So the holy one to be born will be called the Son of God.’”  Hebrews 1:3 -- The Son is the radiance of God's glory and the exact representation of his being, sustaining all things by his powerful Word.  After He had provided purification for sins, He sat down at the right hand of the Majesty in heaven.  Colossians 1:15 -- He [Jesus]is the image of the invisible God, the firstborn over all creation.  

Hebrews 13:4-8

" Marriage should be honored by all, and the marriage bed kept pure, for God will judge the adulterer and all the sexually immoral. 5 Keep your lives free from the love of money and be content with what you have, because God has said,

“Never will I leave you; never will I forsake you.”  So we say with confidence, “The Lord is my helper; I will not be afraid.  What can mere mortals do to me?” Remember your leaders, who spoke the word of God to you. Consider the outcome of their way of life and imitate their faith. Jesus Christ is the same yesterday and today and forever."

It simply does not matter what my opinion is or what your opinion is.  Frankly it doesn't matter what President Barrack Obama's opinion is.   God's word is truth no matter who believes it or who does not.   As an evangelical Christian, I regard the Bible as the authoritative Word of God and I will not support any persons going against the true testimony of Scripture.  This being said, I am ashamed that President Obama is representing our country in this fashion; therefore; it is true that I am ashamed of what values America's vote represented in this election.

President George W. Bush was asked the question, "What is the greatest threat to America?"  The President replied "The deterioration of the Family." (1)

Family Date Night

We decided it was time to take our kiddos out for Ice cream and sorbet last night.  Being it was gluten free frozen yogurt and sorbet, we couldn't resist! 

Update on Little Man and the rest of us :)

This past year with our Little Man has been crazy and unpredictable to say the least!  But we have come very far as to having answers!  I continue to praise the Lord for giving me my "mommy instinct" and insisting that something was indeed not right with my Little Man.  From as early as 3 weeks old, I told the doctors that something wasn't right.  "It's just colic"  "It's normal baby stuff"  "His breathing is just a variation of normal"  I would insist, "NO! something is wrong with my baby and I'm not stopping until we have answers."  11 months,  10 doctors including 6 current specialists, 5 trips to Milwaukee, 2 trips to Madison, countless trips to Marshfield, new furniture, new flooring, no pets, lots of different meds and many many prayers later, we have answers and great progress for our Little Man!!!   We did not give up; we did not take no for an answer; and I am incredibly thankful for that!  The Lord has been teaching us so much through this process.  Throughout most of this process, I was doing it alone-apart from God- not necessarily intentionally away from Him but I was.  I was worrying, losing tons of sleep (still do), becoming very angry, impatient, and frankly fed up with everything!  But this is the part where God's grace and glory shine!!!  One day, about 3 weeks ago, I went on a walk with my kiddos, yes a simple walk that changed the direction of my life!  I poured my heart out to our Lord, hit my knees, and met God face to face.  (I never understand what that meant until I experienced it myself.)  I confessed my pride, my anger, my disbelief, and my discontentment to our Holy God.  I asked God to change my heart, give me a new perspective on life, and mold me into the wife, mother, and woman he intended me to be!  I cannot express enough how freeing it truly is to give up my pride!  In the midst of my bondage to Satan, I didn't realize how much it controlled my being!!  Thank you God for saving me! Thank you God for changing my heart! Thank you for sending Jesus the Christ to forgive me of my sins! Thank you God my humility! Thank you God for your never changing Love and Grace!!!  Thank you God for my Life, my family, my babies, and even Little Man's struggles!  Thank you for providing doctors to care for my Little Man and answers to our Little Man's pain!   God is good all the time, in all circumstances, and in every "problem" we face!  God never leaves us!

1 Thessalonians 5: 16-18 
Rejoice always,  pray without ceasing give thanks in all circumstances; for this is the will of God in Christ Jesus for you.

Now on to Little Man's progress...

He has been doing very well with the cats gone, new furniture, and no carpet in the first floor.  However, when the cold weather hit, we had to turn on our furnace.  Well, not so good for little man.  His breathing labored, his eyes puffed up, more doctor visits, and on and on it went... His allergy doctor decided it was time to see a lung doctor.  We were sent to Madison's children's hospital (which is by far the coolest children's hospital I have seen to date-I will take pictures next time)  to see a pulmonologist aka the lung doctor.  That place was amazing on how they handled my baby.  We saw a minimum of 6 medical staff; they talked with us, listened to our story and concerns, examined our baby, educated us on asthma, and gave us more medication to manage his asthma.  My son failed the written asthma test by a lot! He scored 30 and the minimum is 80.  He was diagnosed with moderate to severe asthma.  We were sent home with three new meds and a new spacer for his inhaler.  Praying this would help him improve, we came home. A few trips to the peds while he was sick, oral steroids, and homemade hepa filters followed.  Fast forward to today... Little man is doing very well on the new meds.  With his new asthma action plan; his breathing is less labored, he takes longer naps (still working on getting him to sleep through the night)  coughs far less-almost not at all!  We are also considering taking him off his breathing monitor because he is doing so well.  Please pray for him and getting the common cold.  He goes to code yellow in his action plan anytime he gets sick.  This means higher doses of meds and meds every 4 hours.  Please continue to pray for my Little Man and his asthma.  God is so good to my Little Man!

As far as the rest of his stuff goes...

Little Man's gluten free/egg free diet  is going very well. It's actually going very well for all of us.  Little Man doesn't hurt as much, doesn't get hives or throw up unless contaminated, plays well by himself, and loves to eat his food.  Little Peanut is also responding positively to the diet change. It took some time for her to get use to the new foods, but she adapted well.  She can now tolerate milk products since the gluten has been removed.  The doctor suspects she probably has gluten sensitivity as well.   SuperDaddy also is suspected to have the gluten problem.  He is almost a completely different person to talk with since he can think so clearly now (unless he is contaminated by gluten)  I have to stay gluten free/egg free since I am nursing Little Man yet.  Praise the Lord, Little Man is still getting my breastmilk, which is the best for him.  The breastmilk aids in healing his stomach from the gluten damage.  

His Port Wine Stain is still being treated in Milwaukee, WI.  He had his most recent surgery at the beginning of October.  The doctor says it is responding very well.  We do not know how many more treatments he needs.  His next surgery is December 7.  
  
His eye is still being monitored carefully every three months by his eye doctor.  Still no signs of glaucoma.   

Please continue to keep Little Man in your prayers.  Praise the Lord with us for these answers and Little Man responding well to the meds and treatments!  

Little Peanut is doing well.  I started working with her again on some "school" stuff.  We are working through the alphabet in a different order than normal.  This week we are learning the letter "L".  She is enjoying "preschool" a lot.  I enjoy teaching her.  I continue to Praise the Lord for helping me prioritize my time and share this time with my Peanut.  She is a typical 2.5 yr old pushing boundaries. SuperDaddy and I are looking to God for ways to show Peanut the right direction through discipline. We thank you for your prayers.


Here are Little Man's 11 month photos and some cute pics of Little Peanut...

 

Promised Pictures of Little Man!

 My Little Man is growing up so fast!  Ten months old!!!!

 Here are some cute pics of my Little Peanut as well!  She is so grown up lately.  Talking nonstop.  Doing "big girl" things and she loves being a mommy with her baby dolls!