Friday, August 20, 2010

Hannah's Progress

When I hear somebody sigh, 
"Life is hard," I am always tempted to ask, 
"Compared to what?"

- Sydney J. Harris -


When asked about my daughter's diet I am often asked, "Isn't that hard? How can she live her whole life that way?"  

Being on a diet yes is hard, but this diet isn't like one to lose weight this is a lifestyle change for her health.  The very foods that most anyone else can have harm her.  Gluten is not her friend so anything containing wheat, barley, rye and certain oats has a negative impact on her body.  She has Celiac Disease (auto immune) and there is no medication for that, just a life long diet without the gluten containing products.

After being diagnosed with Celiac, not only was my daughter's diet impacted but also how our kitchen and pantry have been overhauled and how we view life when out and about.  When you get hungry you can go anywhere to get whatever food you like, for us we have to think of what few places offer menu items without gluten.  Items that might not contain gluten can possibly be cooked in an oil or pan that was just cooked with an item containing gluten.  Cross contamination is a constant worry.  Funny enough, McDonald's has been the most 'gluten-free' friendly place (fast food) if we are in a pinch.  They have the yogurt parfait, apple dippers with caramel sauce and their french fries which are cooked in a designated fryer.  Normally our routine consist of always having a bag full of gluten-free snacks ready to go so we are not without something.  There are nicer dining establishments like Chili's and Outback that we can go to that have gluten-free menus so that makes our options and dining experience more manageable. 

As time goes on, being gluten-free for Hannah, is becoming easier.  I think the hardest thing at first is learning all the names to offending items when reading a food ingredient label, figuring out what besides food can she be harmed by like Play-do and so on.  The gluten-free lifestyle becomes easier with the vast array of products available, recipes available and the acceptability of the diet by many other people.  I started a food blog which you can view if you click on my profile to the upper right.  I wanted a place where I can put some of my recipes down and hopefully help others that would like gluten-free food and healthier food in general.  I am not the greatest at updating that, if I don't please remind me....ahem, thank you Kristin R. for reminding me;)

*I am about to get a little graphic so if you have a soft stomach you might want to wait till another time to finish reading.  This is important for those who are uncertain as to if you might have Celiac and/or wondering how a diet can change ones body.

Immediately after taking Hannah off of any gluten items her bowel movements began to change.  They first changed in color to a nasty green, then to something that looked white and beige to three days later having her first solid bowel movement since she was born!  *Attention!*  Her first solid bowel movement since she was born and she was over 2 1/2 years old!!!!!  That might not mean much to you but that almost brought me to tears.  Yes her smell could do that but I was so excited.  She has had very lose stools and no one could answer me as to why.  Now we know.  Can you imagine having no solid bowl movements for almost three years?  My poor daughter lived it.  Now we are able to finally start potty training and she can do things like a normal toddler.  She does have an occasional accidental ingestion of gluten and after she does she usually has diarrhea for 2-3 days after than her bowel movements go back to normal.  People would comment after we changed her diet how her whole body not just her stools would exude a bad smell.  It was as if her whole body was trying to get rid of a toxin (gluten) and no amount of showers would help the smell but after the first few weeks that smell went away, thank goodness.

Since the middle of June she has managed to grow a little in height and gain almost three pounds.  She now weighs 24 pounds!  Now you might be thinking that doesn't sound like much but when your daughter on average only gains about 5 pounds in a whole year if that, three pounds in less than three months is amazing.  She is still on medication for her gastritis and esophagitis which I think is getting better.  If she does accidentally get some gluten she knows it and complains that her stomach really hurts and that she doesn't feel good.  I believe she is becoming more sensitive to her body since removing gluten from her diet.  Her specialist said it can take up to a year or more for her intestines to heal from the damage that has been caused to them from the Celiac.  So I am praying that in less than a years time that she will be completely healed.  Once healed that does NOT mean she can go back to eating gluten.

If you are wondering how do you gluten-free I will cover that in another post.  

While at home our whole family eats gluten-free.  My husband does make sandwiches and such for work with regular bread but for the most part whether it be at home or out and about we all try to eat gluten-free.  It is just too hard to not do that for our daughter.  We tried eating gluten and she would see us eating something different and would just have a meltdown.  She doesn't understand why we can have stuff that she doesn't, she is getting better at it though.  I do not do a lot of baking as of yet.  I haven't gotten a lot of courage because what I have baked has tasted terrible with the exception of Betty Crocker's Gluten-Free Cake Mix which tasted like regular cake mix.  So we just eat a lot of fruits, vegetables, protein and other starches such as rice and potatoes.  A typical day for Hannah (really the whole family) is:
Breakfast- 2 scrambled eggs and 1 cup sliced strawberries 
Snack- string cheese
Lunch- 2 Quesadillas (2 corn tortilla with grated cheddar cheese) and a peach
Snack- Apple
Dinner- Chicken, asparagus and mashed potatoes
(she does not drink milk but she mostly just drinks water as she is not a big fan of juice so we get calcium in through yogurt and cheese usually)

For now, my beautiful daughter seems happier now on a gluten-free diet and even at a very young age (she will be three in three weeks) she accepts the word no to a food when you tell her it will hurt her tummy and she will push things away.  She is one smart gluten-free cookie.  I try to be as diligent as possible to keep gluten away but I know this is life and nothing can be a 100%, well it could if I kept her in a bubble.  We are just blessed with a church family that is very understanding of her needs and does what they can to make sure she doesn't have a problem, a very supporting family (thanks hunny) where we eat gluten-free at home and in the process our food is healthier, and having supportive friends.  Thank you!  

Eating gluten-free can be done on a budget, can be done if you plan, can be done with taste, can be done out of need or want and can be done by anyone!  Seeing the progress in Hannah makes this whole process worth it.  So to answer the question, "Is it hard?"  The answer is, "Yes, it is but is worth it.  Over time it gets easier as you get use to making meals a certain way it starts to become second nature."  To answer the next question, "How can she live her whole life that way?"  The answer is, "She must for her health and she can by doing the same things we are doing now."  The key to all of this is figuring out what works for us/you and how to do that in a society that is heavy laden with gluten around every corner.  This makes you become more aware of what foods are made of and how they affect our bodies.  So before we ever go on a trip we have to make sure our snacks are packed and if we are going to eat out we know before hand what place we are going to eat and have a gluten-free menu with us. 

Preparation, preparation, preparation! 

One word you will become very familiar with on a gluten-free diet.  The saying that knowledge is power is so very true.  My daughter's health is worth the long hours of research and time spent in the kitchen to prepare meals that are healthy and safe for her.  I do not like it when accidents happen but when they do they just reinforce that belief that her health is too precious to not do what it takes to make her world as gluten-free as possible.

Do you see that smile of Hannah in the picture above?  That is priceless to see her happy and healthy!  So continue to pray with us that her health will continue to get better. 


Thursday, August 19, 2010

Journey Starts For Joshua

The purpose of learning is growth, 
and our minds, unlike our bodies, 
can continue growing as we continue to live.

- Mortimer Adler -




Yesterday we had gone to Oklahoma City for a second opinion.  The second opinion was for what is going on with Joshua by a Pediatric Endocrinologist.  Joshua had been seeing a specialist in Lawton and it has been slow going...literally.  Between Joshua's lack of growth biologically and with the answer from the doctor we were done.  I am sure the doctor meant well but I didn't get answers to questions I had, she wanted growth hormones for Josh but made it almost sound like he would be on them forever.  I was not comfortable with the whole situation.  As much as I respected the doctors opinion I wanted to seek out another.

We were greeted very kindly and was seen fairly quickly at the other specialist's office.  The doctor took the time to explain his reasoning and answered any questions that I had.  After reviewing the medical chart, hearing what I had to say and seeing Joshua he determined that Joshua has Idiopathic Short Stature which is just slightly different than what the other specialist said he had which was Constitutional Growth Delay.  In my opinion Constitutional Growth Delay (CGD) and Idiopathic Short Stature (ISS) are similar in that there is no medical reason why they are small. Their growth, physical body (biological age is a few years younger than chronological age) and puberty is slowed considerably. They both can benefit from Growth Hormone Replacement Therapy (GHRT). How I believe they are different is that those with CGD will resume normal growth by age three but still may be on the small side while ISS means that they may never have a normal growth and will benefit from GHRT or IGF-1 Replacement Therapy (which Josh may take if the GHRT does not appear to be working) plus they may also need a boost for puberty by having some andogren.  CGD is a delay so those kids can reach normal height but it might take them till they are in their 30's to reach 'normal' height.  ISS may never reach it. So at the time being if nothing changes Joshua would be well below 5 feet tall and they consider someone for either diagnosis when prediction is below 5'4'' for men and 5' for women or a standard deviation of -2.25 from normal on a growth chart.  Joshua is something like -4+ so he is considerably lower than most of the small 1.2% of the population.  This is the best I could do to try and give you a comparison between CGD and ISS as I know it to be. 

So the plan is that Joshua will be started on Growth Hormone Replacement Therapy.  We should hopefully receive the medicine in 1-3 weeks.  Once received we will have to go back up to OKC to be shown how to properly administer medication.  Joshua will receive a shot every night for six months.  We will go back in three months and at six months to assess progress.  If he is making progress Joshua will remain on GHRT.  If for some reason he doesn't respond to GHRT, the GHRT will end and IGF-1 Replacement Therapy will begin.  Positive side is that we are very happy with the doctor in Oklahoma City and will be seeing him from now on. He was nice enough to explain things to us and answer any question we had which is more than we could say about our specialist in Lawton. I am sure she meant well but we are happy with our second opinion.

So we are stepping out on a new adventure with Joshua, one that we hope will help.  Far as Joshua knows he is just like every other kid, he is just very small for his age.  Joshua has learned to deal and use what God has given him.  We feel confident with the doctor and his assessment and can move on from here.  Joshua has the world ahead of him whether he is 5'4'' or 4'5''. 


We just ask that you do not judge a book  by its cover.  Kids can be short or tall, skinny or husky, smart or academically challenged, the list could go on.  The point is that do not judge children or adults for that matter, on their outward appearance.  There is usually more than meets the eye if you just take the time to see it.  So the next time you are out in public and you see a child that might seem a little different, please do not make faces, whisper or worse yet make a rude remark to the parent about a child especially when you might not know the situation.  Please just ask the parent if you have questions and it will be up to the parent if they want to answer you or not.  I just ask this out of respect for the child and the parent.  


Taking a line from Veggie Tales; something we tell our children often is, "God made you special and He loves you very much!"  Our kids are loved for who they are, not for what they look like or what sports trophies they can bring home.  They are precious gifts that we are blessed to know and we hope they are a blessing to others.