Living with Hirschsprung's Disease

My dd ZaraLayna was born with a rare disease called Hirschsprung's Disease. Although she has had two surgeries when she was 3 & 4 months old Hirschsprung's is a lifelong disease that causes struggles for the child.

Hirschsprung's disease occurs when nerve cells that are normally present in the wall of the intestine do not form properly during fetal development. During digestion, intestinal muscles move food forward in a movement called peristalsis, requiring special nerve cells called ganglion cells. Because these nerve cells are missing in children with Hirschsprung's disease, normal peristaltic movement cannot occur. Consequently, stool backs up, causing either partial or complete bowel obstruction.

Eventually, a bacterial infection can develop in the digestive tract, causing more serious problems. Severe worsening of the obstruction can lead to a hole in the bowel (perforation) and severe infection. All children with Hirschsprung's disease require surgical treatment.

In children with Hirschsprung's Disease they either struggle with constipation or loose bm's..constant diarrhea making potty training a trial.
My dd ZaraLayna has diarrhea like stools and potty training is a trial for mama and for ZaraLayna. She doesn't realize she is pottying and has accidents quite frequently. Also passing gas always causes an accident.. It's something that has become an issue for her even at 4 and she struggles with it.. :(

Children with a non-dilated colon are considered hypermotile. Rather than constipation, they have a tendency toward diarrhea.

Children may have problems sensing the need to have a bowel movement. Since the urge to have a bowel movement is greater after eating, setting aside 10 minutes after meals to spend on the toilet may help.

She has to learn how to control her bowel movements which is hard.. I know it will take time but it hurts my mama heart watching her struggle with this...

Also any infection in her stomach or intestines could be very serious for her and even things such as stomach bugs end up lasting longer with her than the other children. She also suffers with tummy aches often and bad gas and digestion problems..

Another mama with a child with HD gave me some tips we are going to begin trying to see if we can help her stool to firm up and perhaps help her to learn voluntary bowel control. Perhaps these ideas will help with her digestion, tummy aches and pain also..

1. We're going to be cutting out all dairy from her diet.

2. Start giving her fiber to help firm up her stools..

3. Continue to help her with potty training and feeling and controlling her bowel movements.

My mama heart hurts for her and her having to struggle with this but there was a time when she was in such serious condition that her surgeon didn't know if she would or could make it through her first surgery but thank Elohim she did and went through another surgery after that. She is here and growing and otherwise healthy! We thank You Elohim for that.. !!

Multitude Mondays; Gratitude

41. choices

42. laughter

43. Elohim's Spirit living within me

44. great movies

45. Torah

46. TUMS

47. chocolate

48. our differences

49. being able to tell it like it is

50. the month of Feb.!

TorahBytes...

Bo For the week of January 23, 2010 / 8 Shevat 5770 Torah: Shemot / Exodus 10:1 - 13:16 Haftarah: Jeremiah 46:13-28 Disaster Relief Then Pharaoh's servants said to him, "How long shall this man be a snare to us? Let the men go, that they may serve the LORD their God. Do you not yet understand that Egypt is ruined?" (Shemot / Exodus 10:7; ESV) The world has yet again experienced a great disaster - this time it is the devastating earthquake in Haiti. As it turns out, one of our adult daughters is actually there, and last we heard, she is fine. She is working with a small private school on a Youth with a Mission (YWAM) base in the city of St. Marc. The latest reports from the base director say that it looks as if they were able to open that city's port, and it may become an essential life line to the country. About 75 years ago, British writer and philosopher G.K. Chesterton wrote, "It isn't that they can't see the solution. It's that they can't see the problem." Chesterton's quote is crucially important for effective disaster relief. In order to help people in need, we must first understand what their needs really are. Otherwise we will find ourselves spending immeasurable time, energy, and money for nothing. Good intentions will accomplish nothing, if they are not based on an accurate assessment of the actual situation. This week's Torah portion includes the story of another horrible disaster: the ten plagues of Egypt. Due to Pharaoh's obstinacy, his country experienced devastating judgment from the hand of God. Pharaoh's servants understood Chesterton's word centuries before he ever lived. They knew why their country was suffering and they urged Pharaoh to take action accordingly. But it would take two more plagues, including the deaths of the firstborn sons, before Pharaoh would accept the problem for what it was and take appropriate action. Please note that I am not drawing a parallel between the ten plagues and Haiti, except to say that in order for Haiti to emerge well from this disaster, its leaders and people need to look at their problems with open eyes and honest hearts. That's in addition to the wisdom needed in providing effective and immediate disaster relief. The need to first discern the problem in order to provide the correct solution is a lesson for us all. I have been struck lately how the Scriptures dedicate far more space dealing with the problem of our alienation from God than it does on God's solution for that problem. It seems that we don't easily accept our need for God. We don't easily understand the depths of human depravity and don't readily accept responsibility for our wrongs. And so the Bible addresses this problem over and over again in so many ways. Once we accept our problem for what it is, then we are in a place to discover the solution. Once we accept that like Pharaoh we are under God's displeasure due to our wickedness, then we are in a place where we can receive God's disaster relief: the forgiveness for our sins through the sacrificial death of the Messiah. The human problem is not just a state of mind. Thinking better about ourselves will not automatically cause us to attain a greater standard of existence and behavior. The human problem is our alienation from God due to our rebellion against him. This is our disaster for which repentance and faith in Yeshua is the only relief. If you wish to know more on how to receive God's solution for your life, please contact me at comments@torahbytes.org. For regular updates about the relief work through the YWAM mission base in St Marc, Haiti, click here.

Loving Like Father...

As we have been doing Torah Studies with our children we are beginning to see the LOVE of Father...

Let me share it with you here:

Genesis (its Hebrew name is Bereisheet meaning “in the beginning”) is the book dealing
with beginnings and how YHVH in his divine power chose certain people to accomplish his
purposes on earth.

Exodus (Hebrew name: Shemot meaning “names”) is the book whose main theme is redemption
or salvation. In this case, it is about Israel’s deliverance or salvation from Egypt (Hebrew:
Mitzraim), which we shall see later is a spiritual picture of this evil world. In Exodus we learn just how YHVH saves his people out of the world (or spiritual Egypt) and we are shown that his people are redeemed in order to worship him. The steps of YHVH’s plan of redemption are laid out in Exodus 6:6–8.

Leviticus (Hebrew: Vayikra meaning “he [YHVH] called”) gives instructions on HOW to worship YHVH. YHVH didn’t just tell his people to leave Egypt and to go into the wilderness to worship him. He gave them specific instruction on how to do this in Leviticus. This book is like an instruction book or “how to” manual on worshiping YHVH.

Numbers (Hebrew: B’midbar meaning “in the wilderness”) gives instructions pertaining to our spiritual walk and warfare in the “wilderness” of life. Upon leaving Egypt, not only does Israel learn to worship YHVH, but life in the wilderness begins. The wilderness is a picture of our physical lives on this earth as we are headed for the spiritual Promised Land of YHVH’s eternal or forever spiritual kingdom. We must learn to overcome sin and temptations.
We must learn to fight the devil and those who follow him who will attack us. We become victorious overcomers by faith in YHVH (and in his Word—the Torah and Yeshua) who will provide for all of our needs and help us to fight our battles

Deuteronomy (Hebrew: D’varim meaning “words”) gives instructions
to the younger generation preparing them to enter the Promised Land. Deuteronomy reviews the truths of the Torah, and adds some new Torah-laws, as well. In this book, we learn what our hearts should be like when obeying YHVH’s Torah (his instructions in righteousness). In it, YHVH predicts or prophesies
what will happen to Israel in the future IF they either obey or disobey his Torah-instructions.


WOW!! Did you know that the Torah had such promises that teach us of the LOVE of our ELohim and His son Yeshua the Messiah??

Will we be one of the chosen ones who bring forth the purposes He wants to accomplish on the earth as those in Genesis and love like Father?

Are we redeemed from spiritual Egypt? Have we given our lives and hearts to Yeshua in belief and then chosen to walk out that faith by following His commands?
When we do this we are redeemed and He has set us apart to worship Him; giving freely His love to others..!

Father loves us and didn't leave us hanging without instructions on how to worship Him. In Leviticus we find instructions on just what YHVH expects.

Then Father gives us instructions on how to live our lives here on earth.. We come to Yeshua in belief and faith and then we ask, "What do you want of me Elohim?" Where do I go from here?" "How can I make what I believe, my faith active and living?" We are pointed to Yeshua and his words, "If you love me, you will obey my commands." We can find those commands as YHVH gave them to us in Numbers. Did you know that Yeshua kept the Torah perfectly? Did you know He kept all the Biblical Feasts? Yeshua set an example for us...the LOVE of Father through His son! Can we show the LOVE of Father by obeying Him??

In Deuteronomy we find more instructions but also WONDERFUL promises given to us His people who because of our belief in Yeshua have also become Abraham's seed! If you haven't read the promises given to us I challenge you to go and read the promises YHVH gave if we will but follow Him and His ways; not our own..

Father loves us and through His word we see an amazing plan begin to unfold...

Let us LOVE as Father does! Let us seek His truths through His word! I pray that YHVH's love for YOU will be clearly shown as you seek Him in His whole Word...

What glorious love we have been given! Too amazing to comprehend! And with it a chance to LOVE like Father does!

Are you up for the challenge??

Multitude Mondays; Gratitude

31. beauty marks on my tummy that remind me of the gift of life..


32. La'Chaim (LIFE)

33. a dh who buys me roses

34. chiropractors that pop me back into normal

35. the smiling faces of my children!

36. body parts that stretch (can you imagine if they didn't!??)

37. home fellowship

38. lessons learned through trials

39. ankles that aren't swollen..

40. appliances (a homemakers friend!!) that actually work!

Blessings!!!

8 new things

8 new things I would like to learn....

how to fly..

to crochet...

how to make latte's that taste as good as those at Starbucks..

to homeschool my children better than I do now..

how to make it up a huge hill without stopping on my bike..

to be a better friend to my wonderful dh..

to have the patience of Job..

and not to rush ahead without faithfully praying beforehand...

Walk With Him; Listening for His Voice..

Endless days sometimes wear on me. Day's where the beginning and the end blur..
I find myself overwhelmed and hungry for His presence..

I find I need more of Him and less of me..

Dreams that remind me of the hurt and callousness..but make the here and now more beautiful!

This family Elohim has given me. A woman so unworthy.

I stop and take a breath..life has just moved. Bumps and kicks..

A sweet reminder of a blessing given me by Father..even to this unworthy woman..

I hear His voice through new life within..

Such precious smiles and baby blues here in front of me...

Again He speaks to me.

My sweet dh's voice in my ears, whispering "I love you Puttycat"

In the midst of work and stress I find peace.

I find it in the voice of my Saviour; Yeshua..

He does not leave me comfortless..

There is even words for me if I stop to listen!

Mothers..

When the good L-rd was creating mothers, He was into His sixth day of overtime when the angel appeared and said, "You're doing a lot of fiddlings around on this one."

The L-rd said, "Have you read the specs on this order? She has to be completely washable, but not plastic, have 180 movable parts...all replaceable. Run on black coffee and leftovers, have a lap that disappears when she stands up, a kiss that can cure anything from a broken leg to a disappointed love affair. And six pairs of hands."

The angel shook her head slowly and said, "Six pairs of hands? No way."

"It's not the hands that are causing me problems," said the L-rd. " It's the three pairs of eyes that mothers have to have."

"That's on the standard model?" asked the angel.

The L-rd nodded. "One pair that sees through closed doors when she asks, 'What are you kids doing in there?' when she already knows. Another here in the back of her head that sees what she shouldn't-but what she has to know. And, of course, the ones here in front that can look at a child when he goofs up and say, 'I understand and I love you,' without so much as uttering a word."

"L-rd," said the angel, touching His sleeve gently, "come to bed. Tomorrow-"

"I can't," said the L-rd. "I'm so close to creating something so close to myself. Already I have one who heals herself when she is sick...can feed a family of six on one pound of hamburger...and can get a nine-year-old to stand under a shower."

The angel circled the model of a mother very slowly and sighed. "It's too soft."

"But tough!" said the L-rd excitedly. "You cannot imagine what this mother can do or endure."

"Can it think?"

"Not only think, but it can reason and compromise," said the Creator.

Finally the angel bent over and ran her finger across the cheek.

"There's a leak," she pronounced. "I told you that you were trying to put too much into this model."

"It's not a leak," said the L-rd. "It's a tear."

"What's it for?"

"It's for joy, sadness disappointment, pain, loneliness and pride."

"You are a genius," said the angel.

-Erma Bombeck, 1974


Thank you L-rd for creating mothers! We have worth! We are valuable! Our job is precious in the sight of our L-rd and King!