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!

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.  
•  

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.