Phone Call

Daniel had just gotten home from work and we were doing things in the kitchen.  It was a normal Wednesday evening for us and we soon would be having a sitter come so we could go to our Home Group Christmas party at Erin's.  I was walking out of the laundry room and into the kitchen when my phone started ringing.  Daniel had answered my phone and handed it to me.   I looked down at the number but didn't really connect the dots.  (919)-966-....  Looks familiar but not sure who it was.

Hello I said.  Instantly hearing them say...is this Amanda Smith? the dots connected and my heart sank.  I started pacing back and forth by the kitchen table, my arm started shaking and I couldn't stop moving.  Daniel instantly walked over reading on my face that I was about to panic.  He quickly caught on to who was calling and tried to get me to stop moving so we could both position my cell phone in a way that we could hear what the genetic counselor was about to say. 

The words Sally Harris shared with us that day at 5:16 pm on December 14th, 2011 were words I honestly dreaded hearing.  They were words I NEVER wanted to hear spoke over the phone to me in my lifetime.  They were words I had lost sleep over, worried about, prayed about, shared with friends about.

"We got back Colton's genetic results and he does have the same genetic mutation of OI type IV"

I remember we were standing between our table and buffet in our kitchen.  I instantly gave Daniel the phone and just dropped down.  My body seemed to go weak and I couldn't even control the sounds that escaped my mouth.  I cried so loudly and uncontrollably.  I walked right over to Colton and scooped him up out of the pack-n-play where he was sleeping in the living room and held him on the couch.  I just starred at him tears dripping down my face as they fell on him.  I apologized to him over and over and just continued asking and repeating words of "why, NO, I am so so sorry".  I honestly don't remember when Daniel joined me but he graciously finished the conversation with Sally and got the details we needed and sat down on the couch to join me.  We both sat starring at our beautiful boy just crying tears of sadness together.  We cradled him, kissed him, and loved on him.  I just think we were both in shock and disbelief. 

I remember EXACTLY where I was and what I was doing when we got the same phone calls from UNC about Brayden and Teagan.  But both of those times we heard what we wanted to hear from the other end.  We heard "we did not find the same genetic mutation.  Your son does not have OI".  We cried in those moments together as well but they were happy tears.  Tears of relief, happiness, thanking God for what he had done and for answered prayers.

In that moment with Colton I was not thanking God.  I was not crying happy tears.  I was sad. I was grieving.  I was angry.  I was frustrated.  I did not look at OI as a gift or as something I ever wanted for our family.

1 year later today December 14th... I stand here reflecting on this year with our boy.  (well actually I have been reflecting for a few weeks now.  I think it all started around Thanksgiving).  I can't help but cry again today thanking our Lord for the beautiful little man we have been blessed with.  I honestly can say that because of that phone call that day I have been introduced to a whole new world of AMAZING OI families.  They are families and stories I would have never been blessed to know if it wasn't for getting that phone call.  They are families and stories that have CHANGED me and who I am today.  I have not gotten super involved in the OI world just yet but I am a better more compassionate person because of meeting some of these families, learning their stories, and having the opportunity to be praying for them.  Did I want Colton to have OI? Of course not! But 1 year later I can start to see how God has been working through me during this difficult diagnosis this year.  I feel over this year my perspective is changing.  Some days more than others but it IS changing ;)

I am thankful for where Colton is today and for the opportunity to raise such an amazing determined strong little boy.  I thank God for his determination and feisty personality.  I pray that as he grows up we can offer him opportunities to thrive in this world and live life to the fullest without feeling the need to shelter him too much.

Colton - I know God is going to use you in a BIG WAY.  I pray we remember to tell you that daily and we don't hold you back from the BIG PLANS God has in store for you.

CDSA

Well we had our first official visit from the CDSA on Monday October 1st.  I have to say I was a bit nervous and also excited about it all. 

When Dr. Jenny and Ms. Dana showed up they got right to interacting with Colton.  They were doing different assessments, games, specific play, and even sneaking in some loving from him.  He enjoyed playing with their new toys all the while not knowing they were actually testing his receptive and expressive language, his overall communication, fine motor, gross motor, and everything else I am forgetting.  :)  

I enjoyed answering their questions and getting to brag about my boy a bit! He did surprisingly very well without going down for a nap and I was impressed.  

Overall Colton did not show he needed any services just yet from CDSA and hopefully he will not ever.  He scored right on target or close to it for every area.  Most areas he scored like any other average 10 month old little boy and a couple areas he scored more like an 11 month old boy! Way to go C!! They did agree his hips are "loose/lax" and the way he stands could be concerning in the future, but she is going to send a copy to our orthopedist who we will see in just a couple of weeks.  So I plan to discuss those concerns with him during that appointment.

We did enroll him in the program just because he automatically qualifies due to having OI and now I have another resource to contact in case we do we feel we want another professional opinion on how he is doing later on.  Yes we have all our Duke doctors to call on but these assessments are free and even if he needed services someday the copay would be cheaper than what we pay right now for private therapy!

I have to say in talking to a friend about it earlier today and sharing our experience,  I told them overall I was so glad we did it.  It was encouraging to focus on some of the amazing things our little man is doing instead of always just worrying about what he MAY not do and what concerns we DO have.  I was encourage to hear how well they think he is doing overall and just to have a couple of hours focused on him and to see him SHINE! 

Here's to you little guy! We love you lots and are so proud of you!

4 hours...

Do you ever feel like you move through your day without actually seeing the people around you? 

There are days I feel like I have such a long list of things I want to accomplish that I just move through the day without really noticing the people I interact with at Target, the gym, the people in the grocery lines, the random person walking down our street...

Yesterday was kind of one of those days.  We have an incredibly busy next couple of weeks and so my list is long! I dropped our two older boys off at preschool and let me state, I did acknowledge their teachers and and talked to Joye as we walked in.  :)  But after that Colton and I were in GO mode... I had a list and I intended to accomplish it during the 4 hours I had while the boys were gone to preschool!

Post office - check
Target to buy random things on my list - check
Party City to check out things for B's birthday - check
ATM to deposit money - check
Lunch at Moe's with my sweet Colton - check

and the list went on...

Did I accomplish all that was on my to-do list that morning? Well yes we just about did.  I interacted with Colton and sang to him while we shopped.  I practiced waving bye bye with him and giving him "fives".  But I am not really sure I made eye contact with anyone else while I was living life during those 4 hours!

When I stop and think about it...it is not what Jesus would do.  I know Jesus would have stopped and acknowledge the people around him even if they were complete strangers and His list was long.  He would have had intentional conversations and made eye contact with them.  Everyone has a story that you come into contact with everyday and we are called to love them like Christ would love them.  Was I nasty to anyone?  NO! But did I intentionally show them love? NO! 

With God's help... I am going to work on slowing down a bit when conquering my LIST to stop and breath in the world around me.  I want to acknowledge in a deeper way the complete strangers I come into contact with on a daily basis.  I want to call people by name more than I do and recognize their presence. 

Here's to showing God's love in a more intentional way!

October

October is one of my favorite months of the year and always has been! The leaves start to turn colors, the air gets crisp, the windows are open more..and there are pumpkins, bright colors, and beautiful sunshine that fill my days.  I feel we always make more trips to the farmer's market, decorate the house for fall, and just enjoy being outside in NC!  We attend State football games, visit the pumpkin patch, finish up soccer games for the boys, the State Fair comes to town...just a ton of FUN family events! And on TOP of that list is Brayden's Birthday! Our first born son turns FIVE this month, actually in 9 days! I can't believe it and my eyes swell up with tears of joy every time I think of it.  Save those emotions for another post (if I post again anytime soon). 

Tonight I just redid our kitchen calendar and this month as I look at our calendar I feel a range of emotions.  All that happy stuff is there but along with it this year comes some heavy stuff as well.

On our calendar for this month...

* we have a visit from the CDSA for Colton.  Actually this will take place tomorrow morning.
* I go back to Duke for another assessment of my elbow and am pretty sure they are going to say I need outpatient surgery again this month.
* I am getting another Dexascan done again for the first time in years and then meet with my endocrinologist again to make a plan for my health.
* Colton goes back to Duke and we meet with an orthopedist for the first time and he will get more xrays.

But besides all the medical stuff we have going on this month...my brother-in-law is packing his bags and moving to South Korea for 3 years on October 21st.  We are excited for his new adventure and know we will get to see him from time to time, but also with the excitement comes lots of sadness.  I honestly haven't even begun to process how this will affect our family.  I know our boys will miss Uncle Jeremy a ton and so will Daniel.  I will miss having him over for dinner, feeding him, and chatting about life.  

Part of me just wants time to SLOW down because I am afraid I will miss out on taking in every moment of these joyful and emotional memories we will make this month.  I want to be in the moment and savor it all so I don't look back and wonder where the month went. 

Lord...help me to live in the moments this month.  Help me to not worry about tomorrow but just enjoy the moments you give me each day.  Help me to savor the times with family, friends, and our boys! Help us to begin to process Jeremy moving across the world and I pray you watch over him as he moves.   Lord help me give all our doctor appointments over to you, knowing you already know the outcome of each and every one of them.  Lord I pray you watch over Colton as he begins to move and enjoy all he is learning.

Couponing

So this week is Super Doubles at Harris Teeter! For those of you who don't know what that means...it means Harris Teeter will double all coupons $2.00 and less! So if you have a $2.00 coupon for something you could save $4.00 on that item! They use to only double coupons $1.99 and less but they have recently changed their rules!

We are on this new budget by Dave Ramsey so honestly the last couple of times Harris Teeter has had triple coupons or super doubles I have barely shopped. It has always fell at the end of a month when our grocery funds were low. I knew we had everything we needed to eat and I would have been going to just stock up on some things we would use later on! But now a few of our stock piles are getting low and some of the deals this week are just TOO good to pass up!

I know some of you would debate with me about other grocery stores being cheaper! And I would never tell you Harris Teeter is the cheapest grocery store around! It is most likely the MOST expensive store around but I think Lowes Foods is pretty darn expensive as well! :) But I got all of these items pictured for $13 and some odd change! THIRTEEN DOLLARS!!!! My bill was $64.00 with my Vic Card and then I gave the lady 18 coupons and my bill was $13.00!!!!!

And I know the next question will be...well will you really use all that stuff? I always here "when I use coupons I have to buy stuff I won't use"! Well guess what then - don't buy it even if it is cheap!! All of this will most definitely get used! The only item I splurged on was the Wholly Guac but come on...they were each 79 cents after coupons and we like it but just don't NEED it. :)

We use laundry detergent, soap, milk, butter, shave gel, feminine products, baby snacks, and baby food now that we have an 8 month old! So YES it will all get used!

* The Gillette body washes - on sale for 3.99 and I had a $2 coupon - so it doubled to $4 so they were fre

* Yogurt Melts for Colton - on sale for $2.00 and I had a $1.00 coupon that doubled so they were free

* All Laundry Detergent - on sale for $3.99 and I had a $1.00 coupon that doubled so they were each $2.00!

* Gillette Shave Gel - on sale for $2.99 and I had a $1.00 coupon that doubles so it was $1.00 for shave gel


So do I ALWAYS shop at Harris Teeter NO! Honestly one of my new favorite places to grocery shop is Kroger in Garner! Their prices lately have been great! But during Super Doubles you bet I will be at Harris Teeter multiple times this week! Ziploc bags, more baby snacks, and other items are on the list to check out!

And all this to say...try couponing at least for weeks like this! I know it takes time and is hard to keep organized at times! But give it a try and then all the money you save use to pay off debt, give to a good cause or use it to do something nice for someone you love!

Wishbone Day

Colton wearing his Wishbone Day Shirt!

Every year on May 6th the Osteogenesis Imperfecta Foundation (OIF) recognizes and celebrates Wishbone Day. It is a day to raise awareness for OI around the world and help people learn and understand what it is. With awareness emergency doctors will learn how to handle a child with OI. With awareness they will be able to raise more money to do research on OI. With awareness we will be able to diagnosis more kids properly and what treatments to use!

Most of you know what OI is because of our family but OI is still categorized as a very rare genetic disorder. Most doctors in different fields still do not know much about OI or how to care properly for a patient with OI when they come into the ER, need x-rays, or other specific care. When I have to meet with different doctors I still get looks of "what are you talking about?" or I get comments like "I have heard of OI but don't know anything else about it".

So please wear YELLOW on Sunday May 6th in support of Colton, myself, and all others affected with OI. :)

Please if you do wear yellow, send me pictures via email or text messages so I can see your yellow shirts! Thanks for your support.

Some random facts about OI

Osteogenesis imperfecta (OI) is a genetic disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.” A person is born with this disorder and is affected throughout his or her life time.

• In addition to fractures people with OI often have muscle weakness, hearing loss, fatigue, joint laxity, curved bones, scoliosis, blue sclerae, dentinogenesis imperfecta (brittle teeth), and short stature. Restrictive pulmonary disease occurs in more severely affected people.
• OI is caused by an error called a mutation on a gene that affects the body’s production of the collagen found in bones, and other tissues.
• OI is variable with 8 different types described in medical literature.
• The types range in severity from a lethal form to a milder form with few visible symptoms.
• The specific medical problems a person will encounter will depend on the degree of severity.
• A person with mild OI may experience a few fractures while those with the severe forms may have hundreds in a lifetime.
• The number of Americans affected with OI is thought to be 25,000-50,000. 
• The range is so wide because mild OI often goes undiagnosed.

3 Months Already

3 months has passed so quickly.  I remember being at UNC on January 11th and all the feelings those appointments brought.  When they said we would have a 3 month follow up appointment I remember thinking that seems like a long time from now.  What do we do until then for Colton?  Are you sure we just keep doing life and not change anything for him?

Well here we are 3 months later and we found ourselves back at UNC today.  BLESSED to say that the past 3 months have been uneventful in our OI world.  I have been honored to meet a few other OI moms in the area, keep in touch with some others via technology, and be part of an amazing OI community on Facebook and Yahoo Groups.  What a great resource and support system for so many facing the daily challenges, emotions and even blessings that this rare genetic disorder brings to so families. 

Today's appointment went well.  We only had one appointment with the endocrine department just to do a routine check up on him.  They did normal baby checks (height, weight, head circumference, body temp) and then we met with the doctor.  Overall we did not find out much new about him and I praise God that it seems like so far he is growing and learning like any other 4 1/2 month old baby boy!

I would say that I am pretty convinced now I plan to get a second opinion for Colton.  I think our doctor at UNC is very knowledgeable but I just would feel better seeing another doctor or two in the area or not in the area that specializes in OI care as well.  I have seen a lot of specialist in my life for various health related issues and I always lean towards getting second opinions.  And so when it comes to our son, I feel no differently.  I have been talking about doing this for awhile but honestly at times it is just easier for me to kind of "forget" he has OI.  We handle him and treat him no differently right now (even if maybe we are suppose to).  So there are times I just ignore the fact that he has it and choose not to deal with the emotions and feelings it brings up and the questions it brings up regarding my faith.  I think that is why I have not called any other places to make more appointments to take him.  But after today I know deep down in my heart I need to.  Daniel is indifferent to it but doesn't seem to think it is a bad idea!

So we will continue to go to UNC for now but I do plan to have some other appointments scheduled in the near future.  I am working on some names and referrals.

But for now the plan is as follows...

* Colton will go back to UNC in July for a 3 month follow up.  We should expect this appointment to be a longer day again because we will see his Endocrine doctor, he will get spine and femur xrays to check for bowing, fractures and/or compression fractures, and we will be checking his vitamin D levels with blood work. 

Pinterest Gone Wild

So pinterest has become my new favorite place to go and find ideas! Lately several projects I have wanted to do are finally getting completed. This is because FINALLY we are having less doctor appointments and life seems somewhat "normal" for now!

Everyone has been making these. A wipe board with a picture frame.
Thanks to Daniel for this :)

I need to update these clipboards with some new pictures soon! Poor Colton is still in my belly!

We made two of these boards. One is in the boys room and one is our room! Hoping we fill them with ideas of LOVE all the time!

I am hoping to use these scripture cards to help our boys learn more verses and teach them more about the Bible.

I absolutely LOVE this new clipboard area for our boys papers. Their papers use to be all over the fridge, doors, etc of our house. I knew how important it was to showcase their work but it also felt so cluttered to me after awhile! The PERFECT solution!

LOVE these two book displays! I enjoy organization and they are easy for the boys to use!

Reality

This may surprise some of you but there are times when I don't feel like doing much, even though those times are not very often. :) Tonight was one of them. I was in a "blah" kind of mood again tonight. I think a couple of different things played into this mood.

For one, I attended a funeral today for my dear friend Liz's mom. It was an absolutely beautiful service. It was probably one of the most personal funeral services I have ever been to. Liz and I became friends years ago while teaching at Farmington Woods. We had a unique 1st grade team and we shared a bond like no other team I have ever taught with. We have seen each other through the ups and downs of life. We all don't see each other as often as we would like but there is a deep rooted friendship there that is unspoken. Liz's mom had been battling cancer for over a year and last Thursday she left this world and went to be with the Lord. I honestly have to say I knew she was an amazing woman from meeting her myself and hearing about her through Liz. But listening to the stories told today in the service made me understand the kind of person she was even more. It made me think...what will my friends and family say about me at my funeral service someday? Will they be able to share such amazing stories like I heard today? Will they be able to say I was an amazing woman of God who loved those around me unconditionally? I definitely have been evaluating and thinking about Liz's mom and the story she lived here on earth and the lives she touched. I pray for comfort for Liz and her family and just hope I can live and model a life like she did.

Tonight's mood is also coming from the anxiety I am dealing with in regards to our son's appointments tomorrow. I feel like tomorrow I am going to have to deal with our reality. There is no more sugar coating it. There is no more ignoring it. There is no more thinking oh I will deal with that when it comes. I feel like for the first time since December 14th I am going to have to really face the truth that my son has OI. That he currently has a genetic disease and I can't fix it. Is he still perfect to God...of course. But I still want to fix it and take it away. I want to take away any future pain or hurt he may go through. I want to take away any worry or anxiety him and his future wife will go through. And I can't.

As of 4 pm yesterday, our appointments have changed for tomorrow. We are now attending 3 different appointments for Colton tomorrow at UNC. First he will have a skeletal survey as they call it where he will receive xrays to make sure there are no hidden fractures currently in his little body. Then we will meet with the Genetic Counselor and Geneticist to discuss the OI. Then we will meet with the Endocrinologist that will be following and working with Colton. I am SO very thankful and praising God that we have such amazing genetic counselors that have scheduled these appointments for us and gotten us in to see these doctors so fast. But I would be lying if I said I am not a bit anxious, nervous, and scared for the appointments and the reality I am going to have to face. I will definitely be wearing some water proof mascara!

Updates...

Sorry it has taken me so long to post again about the updates in our life. I am quickly realizing that going from 2 to 3 children is a blessing but a big change. My free time felt like it went from some to none :) Just keeping up with life and taking care of our 3 boys keeps me busy. And I would honestly say some of the "life part" is behind in my book, but maybe I just need to adjust my thinking.

Arm...

Well I had surgery on December 20th. Surgery went well and I was in a big splint/cast that I could not take off or get wet for a week. Then I got put in a smaller splint that I can take on and off just to shower and do my stretches each day. I got 18 staples removed on Wednesday. That experience was not pleasant at all and happened with lots of tears from me. The status now is for me to continue doing my stretches several times a day and I start OT next week. I have to go twice a week for several weeks and hopefully can move it down to once a week after that. I do not follow back up with the surgeon until the end of January! So hopefully things keep progressing well. I can use my left hand for some things but I am not going to lie, not being able to bend my arm at all is frustrating. I am having to do everything with my right hand and not lift much of anything with my left arm at all. Anything that involves your tricep muscle is suppose to be forbidden. This is very hard if you stop and think of how many times a day you use that muscle! I definitely won't take it for granted again!

Colton...

Colton is doing well! He is growing like a weed and is already 5 weeks old. We have progressed to a pretty good schedule already thanks to really trying to follow Baby Wise for the last few weeks. He is eating every 3-4 hours and the last two nights is going about 6 hours at night between a feeding (we will see if that continues). He does have a pretty fussy time that happens each evening which can be tiring for our family when we are trying to take care of and hang out with brayden and teagan as well. He actually started on some Zantac yesterday because the pediatrician thinks he may have some reflux issues so we will see if that helps. If not he is just having a fussy time each day and nothing we can really do but try to have patience until he outgrows it.

Teagan and Brayden are doing great with him. They absolutely love their baby brother and honestly like to be around him too much at times.

UNC...

We do have our UNC appointment scheduled for next week, January 11th at 12:45 pm. We will be meeting with Dr. Alysworth and Beth Hudson (genetic counselor) to start discussing our questions, where we go from here, and to do an evaluation of Colton. Honestly I am not sure what to expect but I am praying for some more clarity and to gain some wisdom. I am hoping some of our unknowns will be answered. Please be in prayer for us as we attend that appointment. I know it will bring a lot of emotions that day. I pray God comforts us and we feel his presence as we discuss our son and his future.



I hope to soon get into a good routine to start updating our blog more often. First - we need to update the look of this blog. Joye Mullis that is where you come in. Let's meet for lessons!!