Saturday, October 30, 2010

GF, GH and Stuff.


A lot has happened in the past few months and I thought you would love an update.  From the photo above you can see the kids are all doing well.  My kids are very good eaters, makes a mama proud.

JT has been placed on Gentropin which is a growth hormone.  Since being diagnosed with ISS (idiopathic short stature) he is being placed on a six month trial of the growth hormones to see if this helps him.  He has a check-up in December and another in February or March.  If he has made significant progress as to what they feel his progress should be he will stay on the growth hormones, if he has not made enough progress he will than be started on IGF-1 or IGF-3 replacement therapy (I can't remember which one they had told me).  Thank goodness for our medical coverage because this medication is not cheap at all.  He gets an injection every night before bed and we calculated the cost and it comes out to about $20-25 a shot.  JT has had a big increase in his energy levels and his muscle tone is getting better too.  I am not sure if it is helping him grow but that is because I see him everyday.  He has been able to finally run which is something he could not do before and enjoys it.  Other than that, he is your typical four year old.

HR has stayed on a gluten-free diet and seems to be doing well.  Zach thinks she has grown some and caught up with her older brother.  Again, I am not sure because I see her everyday.  I might need to take her back in as she is complaining again of stomach pains, so I am not sure if she will need to go back on her medication for the gastritis and esophagitis.  Besides the medical, she has been enjoying riding her bike.

JR has been doing great and being a lively 16 month old.  He is walking all on his own and wants to be Mr. Independent.  He tries to do all the things his brother and sister can do which just makes us laugh because he isn't quite big enough yet to do some things like ride his brother and sisters bikes.  He is also more talkative than the other two were as JT and HR didn't talk till they were 25 months, Josiah just is a little chatterbox and says some words already which is something completely new to me.  A few days ago though he was feeling really warm and when I got home to check his temp, my thermometer didn't work and than when I stripped him down to help cool him off I saw a rash all over his body so off to the emergency room we went.  When we got there, his temp was 103.3.  The doctor came in and looked at his rash, his fever and saw what looked like blisters in the back of his mouth, so she diagnosed him with hand, foot and mouth disease.  So home we went with Tylenol, Motrin and Benedryl.  He seems to be doing better, his fever has dropped but he still has a rash all over.  Please keep him in prayer that he can quickly return to being that lively 16 month old.

As far The Mom and The Dad, we are doing good.  The Mom (me) is sick and I sound like I swallowed a frog or as The Dad (Zach) put it, I sound worse than Joan Rivers.  Gee, doesn't that sound lovely?  Other than that I am getting ready to host Bunco for our PWOC ladies and after that head to PWOC International Conference in Dallas, Texas.  Looking forward to seeing some ladies I haven't seen in awhile, Lord willing, all the kids and I are healthy by the time I leave.  The Dad is busy with work, November and December are busy months because of the holidays but after that should be a time for things to slow down.  He is currently taking two classes, one on public speaking and another on the Old Testament.  He also got told that he could possibly finish his associates before we leave Fort Sill.  Oh yeah, some of you might not know but our orders to Fort Wainwright, Alaska were canned because MEDCOM would not support us medically because of the kids so we are slated to PCS to Fort Lewis, Washington in April next year and Zach will be heading to Korea for a year without us.  After his year there he will return to Fort Lewis for at least two years if not more.

So as a family we are busy, kids being kids, mom with PWOC and dad with work and school so he can get promoted before June next year.  Keep us all in prayer.

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. 

Monday, June 14, 2010

We Have An Answer!


I know it has been a long while since I last posted.  Much has happened since then.  For now, I will just talk about the medical portion of the past few months.

The pediatric endocrinologist the kids had been seeing finally said that she wanted Hannah and Joshua to start growth hormones in September.  My response was that I would look elsewhere since I didn't care for that answer.  It just so happened that I was going in for an appointment for myself when Hannah started to swell and was obviously having an allergic reaction.  So they got her into see a pediatrician that finally helped us.  We still aren't sure why she swelled up but she does have an epi pen now.  From there we made another appointment to see him and at that appointment we brought in our paperwork from the other doctors, explained everything about Joshua and Hannah, told him what we thought (it has to be Celiac or something with the pituitary).  He listened to what we had to say and from there ran tests on both Joshua and Hannah to check several things.  Both Joshua and Hannah showed they had inflammation but couldn't specify where and that both of them had malnutrition.  Hannah's tests were a little worse then Joshua's but not by much.  Both were tested for Celiac but only Joshua's results came back and it was negative (it can be wrong 20% of the time) and Hannah's was never done at all.  Allergy testing was also done and found out Hannah is allergic to mesquite and cashews.  I asked the pediatrician if we could see a pediatric gastroenterologist and he agreed.

The pediatric gastroenterologist we saw in Oklahoma City listened to the same thing we had told our pediatrician.  After going through everything about Joshua, he told me the same thing the other pediatric gastroenterologist had said two years prior, that it was all in his head.  I was furious at this point.  How can you think all of his issues are in his head?  How can his bones not grow?  Is that all in his head too?  Well, we moved onto Hannah and he thought there was something there.  I am still confused as their test results were basically the same.  Anyways, Hannah had blood work done to check for Celiac and only part of her test came back positive so an endoscopy was scheduled.  We got the pictures back and her esophegus and stomach looked brown and wrinkled with bile.

Today the nurse called to tell me that she has esophegitis, gastritis and Celiac disease!  A weight was lifted off of my shoulders.  That my 'gut' instinct as a mother was right, that there is now an answer and we can move on from here.  Hannah has to be on a gluten-free diet for life.  That is the only way to live for those with Celiac.  She is to be put on Axid for the esophegitis and gastritis to help with that.  That should only be for about two months.  

I am waiting to hear back from the doctor to see if he wants to scope Joshua.  He said he would if Hannah came back that she had Celiac.  My husband feels that we do not need to scope, he is tired of us waiting on doctors.  He just wants us to put him on a gluten-free diet also now and not wait.  I go back and forth.  It is hard because I don't want my children to have these procedures but a part of me wants to give them medical proof that it isn't just in his head.

In the meantime, there has been so much research that has been done to learn what I can about Celiac.  It is almost overwhelming.  My husband and I decided a few weeks ago that no matter what the test results would be that we were going to go gluten-free anyways to see what results if any it would have on the children and myself (I have had issues and the doctor believes gluten and dairy may be my problem even though my test came back negative).  We are learning that the test can be wrong 10-20% of the time and that people can still have a gluten sensitivity even if they don't have Celiac.

Celiac is genetic, so others in the family should be tested.  Some people have no symptoms at all.  If you would like to know more and would like to know who can be helped by going on a gluten-free diet please do your own research.  You can visit Gluten Free Girl and visit the many links she has listed.

I just look back at the past few years and can see how standing up and being an advocate for my children has gotten us to where we are.  I know that there are people who go years before being diagnosed.  It took us awhile.  I look back now and see that all the times she spit up formula, her stomach sticking out like she was a child from a third world country, the stinky diapers, the bottomless pit we called her stomach, her constant diaper rashes that were yeast infections, etc were just signs.  No matter how many times I told a doctor, they would just look at me like I was an over protective mother.  All the research I had done, the only things that every came back in the searches was Celiac or something with the thyroid and pituitary.

Now it continues with Joshua and Josiah, who we believe has it too.  So learn as we learn.  Share with us if you know anything.  Our gluten-free journey begins and it will only get better from here.  We look forward to the progress the kids will make, with as few drug interventions as possible!

Sunday, February 28, 2010

Ordinary and Amazing Weekend

 

Where did this weekend go?  As I sit here trying to think about it, it is as if it was all a blur.  I know I am not the only one that has weekends or days like this.
The weekend wasn't too out of the ordinary.  On Saturday Zach and I cleaned house some.  I took a break to take Joshua to the swimming pool.  The last time he went swimming was about 6-7 months ago and he did great.  Well, this time around was anything but.  He was so scared and kept screaming.  His high pitched scream was not nice on the ears...I think they are still ringing.  Poor guy, took forever to get him into the water and by that time I was ready to go but he didn't want to leave.  I gave in and played with him in the water for a little bit but I started to get cold so I called it quits.  I took him trying to prepare him for his birthday party which is in a few weeks.  I plan on doing a pool party at the local YMCA for him.

We got home so I could finish organizing all the children's clothes and putting them away.  Oh, what fun...zzzzzzzz...sorry all that excitement was making me tired.  Let's just say the children's closets look amazing, now if they can only stay that way.  After the closet overhaul I decided to try and feed Josiah.  Since Josiah is breastfed he hasn't wanted to take solid foods from me so either Zach or other friends have had success at feeding him.  At last he decided to take solid food from me!  Woohoo.  This boy scarfed down two little tubs of stage 2 baby food, one of sweet potatoes and one of bananas.  This boy loves his bananas.  He is doing great at taking solid food since he started on the day of the Super Bowl, can't remember what day that was.  Now he is eating solids on a daily basis instead of every few days.  My baby is growing up:(

Sunday; today, we went to church as usual.  This Sunday Zach was singing and he was wonderful as always.  Later we went out to the lake with some others from Zach's unit to just get together.  The kids had fun playing while the rest of us threw a football and kicked a soccer ball around.  While we took a break to eat some food the wind started blowing like crazy and it got cold very quickly.  We had to call it quits and head out.  I don't know what it is with the wind in Oklahoma but it can chill you to the bone and is not nice on when you are trying to go somewhere and you want your hair looking nice.  I do appreciate the wind more so in the summer to help cut through some of the heat.  Anyways, made our weekly trip to the grocery store and home for dinner, putting kids to bed, the usual.  Through all of that, I noticed something new on Josiah tonight.  His second bottom tooth broke through his gums.  Josiah is making so much progress, especially in crawling.  You put that boy down on the floor and he is gone.  I have to keep the floor clear of anything that is small enough for him to swallow.  The vacuum cleaner is now a permanent fixture in the living room.  This little one is keeping me on my toys.  I know this will only last as long as it will take him to start walking which I think won't be too long.  I am hoping he will wait till he is 15 months old as he is almost 9 months old now; well he will be 9 months old in about 2 weeks.  One can hope!

See that photo of my little cutie Josiah up-top?  It is true, he is 100% cute and so is Joshua and Hannah.  What an ordinary and amazing weekend full of the everyday things and the milestones my children are reaching.  God has blessed me with three wonderful children who are ever changing and I love seeing those changes in them!

Friday, February 26, 2010

Stinky Fun Afternoon


Just so you know, this photo was taken awhile ago on our cell phone.  Zach was trying to have a funny face.  Well, I felt this face was so fitting to go along with the first word of the post 'stinky.'  After we had taken the kids bowling today with Zach's unit we decided to head down to Wichita Falls.  I don't think we had ever seen so many skunks on the side of the road, on the same road, for the stretch we had been on.  During that 45 minute drive I swear there were about 12-15 dead skunks.  It smelled terrible.  After the first few we just had to start laughing at the stench and the number of them.  Can someone please tell me what is the importance of skunks?  Purpose?  I would sure love to know.  I swear their smell is still lingering...ewwwww.

While in Wichita Falls, TX we went to a few stores getting some things we need.  For Hannah we got her some No Bite nail polish in hopes this will help her with her finger sucking.  She has never taken a pacifier, she just sucks on the same two fingers which drives me nuts and I know isn't any good for her fingers or her teeth.  I am hoping this No Bite polish works because I am at a loss of what to do for her to get her to stop sucking those fingers of hers.

For Joshua we went to Academy to try and find him some shin guards for soccer.  I know soccer season is right around the corner and my goodness was the store wiped out of the tiny ones for kids.  We did manage to find one pair for him to use that fit relatively okay.  We also tried finding him some cleats but they don't make them or at least this store didn't sell them in his size.  He wears a toddler size 6-7 and most won't start till size 10.  So we will just have to improvise.

We didn't need anything for Josiah until...he had another blow-out!  This boy has some talent at making messes which very few of his mess will actually be in his diaper.  Grrr.  We just happened to be at a Sam's Club which was huge (I guess the saying is true that everything is bigger in Texas...lol) so we got him some clothes there since I forgot to pack a spare set of clothes in the diaper bag.  I can't remember everything:(  Oh well, it was a good laugh.

We went a few other places but it was nice to get out of Lawton and go for a drive with my family.  It was fun, even including the skunks and a blow-out.  On the drive home Joshua just would not shut his mouth.  This kid does not know how to be quiet so he sang his ABC's and various other songs. He probably sang 'Old McDonald Had A Farm' for about 20 minutes going through every animal he could think of which was just fine with us since all we did was sit there while he sang it all by himself.  After that he decided he needed to count to 100 which he did a great job with, then counted in Spanish to ten, told us all the shapes, colors and whatever other random thought that came into that brain of his.  The drive home went quickly thank goodness, to where the children got a bath, pj's on, bedtime routine and off into lala land they all went without a peep.  Can you hear the crickets?  So peaceful!  What a good night.

So that was our stinky fun afternoon.  Hope yours was just as equally fun ;)

Oh, if you were wondering, we never did get a call back from Joshua's doctor.  Hopefully we will hear back from her on Monday.

Wednesday, February 24, 2010

Lab Work

"Life is a train of moods like a string of beads; and as we pass through them they prove to be many colored lenses, which paint the world their own hue, and each shows us only what lies in its own focus."
-Ralph Waldo Emerson-


Here's my handsome boy playing with what he loves, blocks.  Daddy helped him out but he is doing well at creating smaller scale models all by himself.  I love this little guy!

Yesterday, I took Joshua to the hospital to have some lab work drawn up on him so that we might finally get some answers as to why he is not growing.  I don't know about you but doctor scribble is so hard to make out so I had to ask the lab tech what were all the things he was being tested for.  Please click on each one so you can understand what the test are specifically.  Through all of this, it is definately making me more aware of a lot of medical knowledge which if others hear me talk to a doctor they really wouldn't have a clue as to what we are saying...lol.  There is still so much I need to learn, so I ask for clarification from the doctors so I can know exactly what is going on at each stage.  Knowledge is power!

(1) Health Panel:
          CBC
          CMP
          TSH

(2) T4

(3) IGF-1


Because of all the testing that Joshua has had to have done, he is terrified to even walk into a medical facility and will freak out.  He looked at the lab tech and said, "Oh, no.  Not you again!"  Then started trying to make every excuse as to why he didn't need to be there, but I just had to laugh at what he said.  He hadn't seen that tech in almost a year, yet he still remembered her face.  Joshua has a memory like no other. 

It took a few tries to get his blood but they finally got it.  He has several problems with his veins.  1-that they are still the size of an infant, 2-they roll, 3-they blow easily, 4-his blood clots very quickly and will cause no more blood to go up into the needle, and 5-he throws the biggest fit and has to be held down by several adults.  I hate; let me repeat, I hate it when he has to get anything done in a lab!  I know it is only temporary but Joshua doesn't forget.

So hopefully in the next few days I should be receiving a call from the doctor to tell me the results of the blood work.  We are praying for answers.  It is so hard to not know.  As of now he is still labeled as saying that he has a Constitutional Growth Delay.  With that diagnosis, there isn't an answer.  But I don't believe that is his problem and I don't think the pediatric endocrinologist believes that either because of how severely behind he is.

So if everything comes back normal; which all the other tests he has had done have come back normal, we are going to start to looking elsewhere for different opinions.  Before I get hasty, I will just have to wait for the doctors call.  Waiting is usually the hardest part for people but I am so use to it, that unfortunately it doesn't phase me anymore.  That could be a good and bad thing.  In the meantime I have the kiddos to keep me busy and housework that needs to be done.  Life must go on!


Monday, February 22, 2010

Still no answer.

A military wife's life is easier than you think. All you have to do is accept the impossible, do without the indispensable, bear the intolerable, and be able to smile at anything.
 ~ Anonymous

The above comment I do agree with but I still love the one I heard from years ago... IMPROVISE - ADAPT - OVERCOME

Each one bears on my heart today.  Some of you know the ongoing medical issues with the kids but for those of you who don't know, I will give you a brief overview.  Since Joshua and Hannah were born they have been on the smaller side and from about 9 months old and on their growth for some reason has been slowing down.  So they were diagnosed with failure to thrive and with that diagnosis comes monthly doctors appointments, keep a log of what they eat, etc.  They have had bone age xrays done, that is when they take xrays of the childrens hands to see how much physically they are maturing.  My children have been behind on that.  So they have seen specialist such as gastroenterologists and pediatric endocrinologists which have performed various tests and all have come back normal.  So the waiting game, let's wait a few more months then re-evaluate everything.

Well, I have been putting the appointment off for a year and finally went today.  It was not what I was expecting to hear.


Hannah Rose is a petite little girl.  She has been on the smaller side but for her height for age she just hit the 5th percentile line today!  The is great that she even made it onto the growth chart.  Her xrays revealed that she has the bone age of a 13-14 month old and right now she is 2 years and 5 months old.  She is 82 cm tall and weighs 22 pounds with clothes on.  She is still cute as ever and does exceptionally well at the doctors office.  For now all we are doing is going to continue to have follow-up appointments to track her progress or the lack there of.




Joshua Trier is a little boy.  No one believes me he is as old as he is until he opens his mouth.  He is very smart for his age so don't let his size fool you.  Joshua is 87 cm and weighs 28 pounds with clothes on.  There is a lot of heart in this little guy though when he is at the doctors all he has is fear.  He has seen many doctors and has many tests, that now he is terribly frightened when we go to the doctors or sees someone with a white coat on.  I try to help calm him but not much works.  My heart breaks for him when he has tears streaming down his face because he generally knows something is going to happen to  him.  I was very proud of him today, getting his xrays done for the first time without having to have an adult hold him down. 

Well, I thought the appointment was going well till we got the xrays back.  The look on the doctors face was not good.  She looked at me and said he has to be retested.  His bone age hasn't changed in over a year, his bone age is that of a 12 month old.  Even when I looked at the xrays I could see that Hannah's were a little more developed then his were.  So I ask the obvious question, "What would cause him to not grow?"  The doctor replied with, "It is most likely his growth hormones or possibly something wrong with his pituitary or thyroid like a tumor..."  My mind kind went blank after she started going.  I am just thinking, excuse me, we have had growth hormone testing done before which came back normal, we have had some genetic testing done and that has come back normal plus various other test, all which have come back normal.  So to date we have no answer as to why he isn't growing.

So tomorrow I will take Joshua in to have more bloodwork drawn...oh, this should be fun, NOT!  So hopefully we can get some answers.  I will have to wait a few days for the results but I guess from there we will either start him on growth hormones or figure out what other tests need to be done.  Right now his doctor; pediatric endocrinologist, is still calling it constitutional growth delay, which means that he will develop much more slowly then other children and might not mature until he is in his late 30's and even then she said he might only reach 5 feet 4 inches.  But after the blood test I am hoping that she will change her diagnosis for him.  Both Hannah and Joshua have changed from failure to thrive to short stature.  For some, this may not seem like a big deal but to me it means a lot.  It means less doctors visits, less intrusion, etc.

Even though Joshua will be four years old next month and is little, to him, he has no understanding of what is going on with him physically.  Mentally he is right up there.  Just like it says uptop; improvise, adapt and overcome.  That is what I need to do with both my children.  I need to improvise when things aren't 'kid friendly' for my kids.  I need to help my kids adapt to what is around by showing them how to do things that work for them.  I need to help them overcome anything by showing them that no matter how big or small someone is there is always a way to do things.  I believe my kids can do anything they put their minds too, I just need to remember to treat them like they are just any other kid.  Until now I looked at their shortness as an obstacle but what it really is, is that I am their roadblock by babying them.  They will continue to go about life and find ways to do things as long as they are not treated like they have a handicap.  I need to look at this in a positive light...not sure what that is now but I know God has a plan.  Every good and perfect thing comes from Him!

So please, please pray that we might be able to get some answers one way or another!

Thursday, February 18, 2010

Welcome to our new blog home!

Hello everyone!

Welcome to our new blog home! We have moved somewhere over the rainbow where the skies are blue... We haven't physically moved but our blog has.  Aren't the photos of the rainbow lovely? I was washing dishes one day and looked out the window to see two beautiful rainbows. They were so vibrant that a photo had to be taken and these do not do it justice. Well, the same will be for this blog. I will try my best to put up post and take photos to show what is going on in my families life but I know it will not even compare to us actually living it. My hope is that you can catch a glimpse of how we live life and come along for a ride with us.

Leave comments and or request of what you would like me to put up or just to let us know you are enjoying what I am posting. So come back and visit often. You can also always go to our old place at Life Happens

Genesis 9:12-16