Gluten...What is it anyway?

For those of you who are wondering what this whole hoopla is about my family going gluten free,  Here is a post to explain it all. We have been doing tons of research and reading on celiac disease and the gluten free diet but to make it easier I will use wikipedia to explain.

The wikipedia definition is as follows for gluten...

Gluten (from Latin gluten, "glue") is a protein composite found in foods processed from wheat and related grain species, including barley and rye. It gives elasticity to dough, helping it to rise and to keep its shape, and often gives the final product a chewy texture. Gluten may also be found in some cosmetics or dermatological preparations.


So what is Celiac Disease?  I'm glad you asked...According to wikipedia,  It is an autoimmune disorder of the small intestine that occurs in genetically predisposed people of all ages from middle infancy onward. The treatment is a gluten free diet. There is no cure. Because this is a genetically predisposed disorder, the rest of my family was tested for it as well.  The theory is, someone else in the family has it.  So we will get the results back sometime next week.  Please keep us in your prayers as we wait.  Regardless if another member of our family has it or not, we are all staying gluten free at this point.

In a nutshell, we can no longer eat wheat, rye, barely, and most oats. Anything that comes in contact with any said products are also a no go. And most processed foods have gluten added in some variation or form.  We are keeping our home gluten free for the safety of our son. My son has celiac and this is changing our world.  Never did I ever imagine a baby could so drastically change ones life.  Little Man has not been an easy baby to say the least.  I have lost many many hours of sleep because he cries inconsolably, he thrashes his body around the bed, has difficulty breathing, and occasionally has stopped breathing.  Thankfully his asthma medication helps with his breathing. My world is so different since Little Man has been born.  Not only was his pregnancy hard, his infancy has been as well.  I'm grieving for my little man, all the pain he has been in could have been different.  If we only knew so many months ago what was causing all his "colicky" behavior.  But in all of this, I trust the Lord.  We pray that this new finding of Celiac disease will help our little Man feel better and get the much needed sleep he needs as well as the rest of us.  

Please continue to pray for our Little Man.  

• Please pray that this new diet will help him feel better.    
• He is also allergic to wheat and egg.  (thus making the gluten free diet harder) please pray that we can diligently learn what all this means and keep him from eating egg as well.
• Please pray for his asthma. His new medication seems to be helping but last night he had a few more episodes and we had to give him his rescue inhaler.
• Please continue to pray for the risk of glacoma.  He still is clean and doesn't have it.  We still go to the eye clinic every 3 months.
• Please continue to pray for his laser treatments for his port wine stain.  His next scheduled treatment is October 5. He does need to be sedated and this is very hard on him.
• Please pray for wisdom and encouragement for me and my husband throughout this journey with our son.  
• Please continue to praise the Lord for our wonderful Little Man.  He is a joy and delight when he isn't in pain.  
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When he isn't in pain, he loves to laugh, crawl, eat, and have fun.  Superdaddy is one of his favorite people and he beams with excitement when Daddy walks in from work.  He loves his big sister (little peanut)  He still is a little small to wrestle, but they both can't wait for the day when they can!  I love my little man, he truly is a blessing from the Lord!!!

Pictures coming soon....

 

Newest Update on Little Man...

Little Man seems to be doing much better with his new asthma medication.  He still needs his albuterol inhaler once in a while but less often than before.  I never imagined my little baby to be on so much medicine!  But sometimes, as in this case, his meds are very needed.  Praising the Lord for his goodness!!!

We finally met with his tummy dr (GI specialist) and he ran some blood tests for certain things.  I was anxiously waiting the 10 days to hear the results.  Praying for good news because it seems everytime he sees a dr, more things are found and diagnosed.  I don't think I've cried so much in the life than I have since Little Man has been born.  The nurse called me and told me that his blood tests show that he is allergic to wheat and eggs.  And he also has elevated antibodies that indicate celiac disease (gluten intolerance).They want to test him further to determine to confirm or deny their findings.  I cried hard after hanging up the phone with the nurse. It's so frustrating.  I don't understand what all the testing is.  I would prefer to just change his diet and see if he improves.  He has a test tomorrow morning and the next ones will be scheduled after that if SuperDaddy and I go through with all the testing.  Please keep Little Man in your prayers. How much more can be wrong with my baby.  Please pray that I stay focused on the Lord and continue to praise him in all circumstances!

Thanks for your prayers and support!

Little Man's 9 month update...

 Last month we found out Little Man is allergic to cats and dogs.  We are so thankful for an answer to his problems; but it doesn't stop there.  Things started to improve greatly, just after a week of the cats being gone and most of the cleaning done, he started eating solid foods.  He has been doing wonderfully with food, and it's so relaxing knowing he can eat more than just breastmilk!  And this Mommy is proud to say he has gained 1 whole pound and .25 inches since he started eating.  Before this, he didn't grow for 2 months at all.  So we are exhausted from the cleaning, replacing carpet and furniture and trying to understand all of this.  Well, he still has been having episodes, which keeps him awake at night, and continued problems with the cat allergy.  We saw the allergy doctor again yesterday and he diagnosed him with severe asthma and put him on more steroids.  It's so hard to hear this.  I cried in the doctor's office when he said we need to give my little 9 month old baby steroids every day.  I'm in shock to say the least.  I told a friend last night "I'm struggling so much with this news. The side-effects of the drug can cause the same symptoms it is suppose to treat. I cried when the dr told me. I'm exhuasted. I'm tired of taking my baby to drs. I'm tired of bad news. I'm tired of being tired. Apparently the asthma is what causes him to not sleep at night. I desire sleep and some normalacy. please pray for us."  This is so true. Please if you think of us, please pray for my baby and our family.  SuperDaddy and I are exhuasted, we are beyond tired and energy drinks (they no longer help us).  We need our baby to have a good night's sleep and we are praying this medication will give us that.  If you have any experience with infant asthma and treatment, please message me.  I do not feel comfortable with all of this, but I feel like I don't have many options.  So please keep us in your prayers. But praise the Lord that my little Man can finally eat solid foods and start growing again!!!

As with his allergies, since he tested positive for cat and dog so young; he will need to be tested every 3-4 months for new allergies.  He is more suseptable to all sorts of allergies because of his current allergies and his young age.  You aren't suppose to be positive for allergies until at least a toddler.  So being an infant and having allergies is a big deal. That's what they told me anyway. 

As for his port wine stain, he had his first sedated treatment on August 3.  It went very well and the doctor thinks we should only need a couple more treatments!!  That will be nice not going to Milwaukee every 2 months.

He had another eye check up and that went great.  He still has good eye pressure and healthy nerves. He still has a 50% chance of developing gluocoma. Please continue to pray that he doesn't develop this condition.  He needs to be rechecked every 3 months.

Like I stated above, please keep my baby and our family in your prayers.  My Little Man has been to so many doctor visits and he is only 9 months old.  I'm thankful for the medical system and provisions for my son's issues. In addtion, I'm thankful for help and answers.  Thank you Lord for answers, May you keep Little Man in your hands and continue to protect him.

Here's Little Peanut... She is now 2.5 and doing wonderfully! Great personality, great humor, and always very curious!  She has her moments and sometimes I lose my patience with her. But overall, she is a joy and pleasure to be with. I love my Peanut, that is for sure!!!  She brings me joy in my heart!!!

Much needed update on our Little Man...

Little Man is growing in leaps and bounds.  He can do so many things these days.  He can crawl on all fours, stand up with furniture, walk with mommy's assistance, babble like no tomorrow, and loves to put everything in his mouth!  

Little Man has been doing fairly well lately regarding his "episodes."  We thought he was over them, maybe he just outgrew whatever was causing them.  So that was a relief to us these past few weeks.  On the other hand, Little Man cannot tolerate solid foods.  We have tried multiple different foods and he just screams and then cannot have a bowel movement for days without assistace.  We took him to doctors and no answers.  We are currently waiting to see a GI specialist.  The earliest we can be seen by a GI doctor is August 20.  We tried all over WI and this is the earliest.  We switched his doctor and now he sees a pediatrician with Marshfield Clinic.  This doctor changed his acid reflux meds (this ahs helped) and scheduled various appointments and tests.  And one of those appointments was today.  We saw an allergist to determine if little man is allergic to the foods we have tried to give him.  After getting the results back from the test today, I was in shock.  May I saw, overwhelmed!  He is not allergic to the foods we have tried, however; we finally, after 8.5 months, received some answers today.  SuperDaddy and I are thrilled to finally have an answer to his episodes.  But this answer does not come easy by any means.  Our Little Man is allergic to our cats, Tinkerbell and Kit Kat.  We also found out that his "episodes" were asthmatic attacks as a result of the allergy to them.  This means we have to find new homes for our cats.  We also have to wash down all the walls and ceilings.  Preferably replace the carpets and furniture. We are also to buy a HEPA filtre to help get rid of the allergens.  Apparently reactions are worse in the winter months and that is why he has been "episode free" these past few weeks.  The doctor wants us to have the house and everything changed over and cleaned before the winter months because of the risks involved.  He now has an inhaler in the event he would have another asthmatic attack.  He aslo has an allergy medicine as needed if he will be exposed to cats or dogs.

Please continue to pray for our Little Man...

• Pray that we get answers from the GI doctor why he cannot tolerate solid foods.
• Please pray we find new homes for our cats.
• Pray for our family as we grieve losing our cats. 
• Praise the Lord we have found an answer to his episodes and a cure!!!
• Pray that we can get the house cleaned and changed over in a timely manner so that our little man can feel better as soon as possible.

Kit Kat is our four year old Cat. She is female, spade, and is declawed in the front.  She loves people and does very well with kids.  If you are interested in taking her, please contact me. 

Tinkerbell is our ten year old Cat. She is also female, spade, and is declawed in the front.  Tink is wonderful after she gets use to you. Sometimes she is a bit on the territorial side.  She would do well in a home with one/two people.  Please contact us if you are interested in taking her.

Please Pray for my Little Peaunt

As well as praying for Little Man, could we ask for prayers for our Little Peanut.  Little Peanut has been potty trained since 22 months old.  She is now 27 months old.  We have noticed that she "pees" incorrectly and this apparently needs to be fixed. She pees up and out of the toilet instead of down and into it. She is having "minor" surgery on Friday May 25 with sedation to fix this.  Yes, you read that correctly, not just one, but both of my babies will be sedated two days apart.  Yes, I'm anxious, trying not to freak out inside.  Please pray for SuperDaddy and I as we go through this week's appointments, trusting our little ones to Him.  Please pray Little Peanut's surgery goes well and she doesn't react negatively to the anesthetic.

some cute pics of Little Peanut...

Little Man's 6 month update...

Please continue to pray for our little man.  First the praises!

• Praise:  Days have gotten much easier as he loves, absolutely loves to crawl around the house.  So there is a lot less crying during the day.  He is still having "episodes" during his sleep.  They wake him up and he screams. Therefore, I still hold him at night and nurse him often, as it is the only way to calm him down after an episode.  
• Praise: At 5 months old we switched doctors and he was put on zantac and probiotic for acid reflux.  HE IS SO MUCH BETTER!  We still have our days where crying is heard a lot but we have finally hit a point where I can get some things down around here. 
• Praise: Today, my wonderful mother in law came over to help juggle him and cleaning.  My entire first floor is clean!!  I'm so excited, I pray it stays this way for a while so I can enjoy a clean home ;)  

Prayer Requests:

• We attempted to feed him solids, and it didn't go very well.  First we tried avocados, he was constipated and needed multiple suppositories.  We waited a couple of  weeks and tried rice (thinking it might be easier to digest) he screamed for a couple hours that night) So then we tried prunes (my thinking, well this can't constipate him) That night was by far the worst night I have experienced being a mother.  My little man literally screamed, arms and hands flaying, from 11pm until 3am.  I was getting hurt by him as he was kicking and hitting me and I had to put him down.  If I laid him in the crib, he just would hurt himself more.  I ended up buckling him in his car seat and had to helplessly watch him scream until he finally stopped 4 hours later.  So needless to say, I'm terrified to try solids again.  We spoke with his doctor and she said to wait a few months and try again.  So yes, my 6.5 month old is still strictly breastfed.  Please pray that my milk supply stays adequate for his necessary development. Right now is a developing very well and no need for concern.  He is my big little man!
• His 6 month MRI is scheduled for Wednesday may 23.  We arrive at the hospital at 8:15, the MRI is at 10:00.  This MRI is going to confirm or deny if he has sturge weber syndrome. Little man will need to be sedated for this procedure.  As a result, he will not be able to eat for at least five hours before the MRI. Please pray that we get through this time well.  Also please pray that he does not have sturge weber.   Regardless if he does or not pray that we continue to  find rest in God's almighty hands and trust him with our son's future. 
• He has had 2 laser treatments.  He is responded fairly well.  We still have many more ahead of us.  His next scheduled laser treatment is on June 6.  Please pray he does very well so that  his nine month treatment can be done in clinic without sedation.  The more we can do when he is little the better as it doesn't involve sedation.  And because of these summer treatments, he cannot be in the sun AT ALL.  Please pray that he doesn't get sun exposure as this is very hard to do all the time.  

Enjoy some little Man pics....

Little Man's update...

So for those of you who do not know.  We were in Marshfield for the past four days at St. Joseph's hospital with our little man.  He was there for observation and put on a video EEG to confirm or deny that his episdoes are seizures or not.  None of us were prepared for this hospital stay. His doctor said it would be overnight, well it wasn't.  The hardest part of the whole thing was being away from my daughter and having my little man hooked up to all the wires.  It made him look like he was in there because he was sick.  But I am very thankful for the news that his episodes are NOT seizures.  They are just normal things that happen I guess.  At least that is what they decided it was.  So we are very thankful for this news and are praising the Lord for getting us through this weekend apart as a family.  Our little man sure was cute and the child life specialist even found him his favorite toy- a supersaucer....

Our little man doesn't really like sleeping in a crib, especially hospital cribs; the nurse found him this...

But even though it was a cool gadget and it even glided back and forth automatically, the little man would not sleep for us.  We needed him to sleep so that we could capture an episode as they only happen in his sleep.  The first night I was by myself with him and neither one of us got much sleep.  Then to wake up and hear you are staying all weekend was not fun to say the least.  So Grandma brought him his rocker bed that he absolutely loves and he started sleeping very well for us.  SuperDaddy stayed with us the rest of the weekend.  Grandma and our Favorite Babysitter took care of Little Peanut for us!  We can't thank them enough!! 

So on saturday he had two episodes and on sunday the doctors said he was ok and they are NOT seizures.  What a relief!!!  They still wanted us to stay another night, but SuperDaddy and I said we were going home.  So we came home sunday afternoon.  So very thankful for a cordless baby!!!

We were thrilled to be back home to enjoy the beautiful weather as a family!!!

Thank you Lord for the great news of NO SEIZURES!  

His eye exam last month came back great, no glaucoma yet.  He still needs to be checked every 3 months as it could still develop.  

He will be having his MRI between 6-9 months old to find out if he has sturge weber syndrome

His next laser treatment for his Port Wine Stain will be April 4.

Please continue to pray for our little man.  We thank you for your prayers and support.  

A few more pics of the weekend...