Weighing In On Being 2

Brinkley had his two year well check up yesterday.  Thankfully, there were no shots involved, only a finger prick.  We will be headed back soon to get flu shots though.

It was no surprise that he is in the 0.13% for weight (yes, that is less than the first percentile), weighing in at 19 lbs and 0.5 ounces.  He is small, but mighty and (dare I say it) HEALTHY!!!  

When the nurse asked what changes had been made since our last visit I had to question when our last visit was.  We had not seen the pediatrician since May.  That's right May!  No sick visits since May and that visit was a hospital follow up.  She also asked about hospital stays since our visit and there were NONE!  The g-tube closure fell in that period, but it was an outpatient procedure so it didn't count.  

Yes we have had many other doctor visits in that time frame, but all of them were routine visits.  There was one potential sick visit to Pulmonolgy in June, but he was simply having seasonal allergies so he wasn't technically sick.  

Wow!  God is good and our little guy is making progress everyday!

Dream Come True

I must admit, I am a little emotional today.  This is a bit uncommon for me.  Allow me to share with you what I have had the privilege to do today.  

Last week I was asked if we would be willing to participate in Radiothon.  Radiothon is an annual fundraiser for our Children's Hospital that is hosted by several of our local radio stations.  The DJs take time throughout the day to interview families whose lives have been impacted by the hospital.  It's a bit on an understatement to say that it has made an impact on us.  

We were asked to be available during the 8 am hour this morning.  Brinkley and I loaded up early and arrived at the hospital about 7:45 this morning.  I was so blessed to be able to talk with the DJs from three of our local stations.  Brinkley caught the eye of a few of the DJs and one of them tried to get him to "talk" on air.  Several photos of our little guy have shown up on the Facebook and Instagram pages of the stations and DJs.  

One of the female DJs mentioned how lively and joyful he is despite the set backs he has faced and asked a question in regards to that.  I don't remember exactly what she asked, but I quickly responded, "Brinkley is the biggest blessing we never knew to ask for."  

As we left the hospital that statement became real to me in a brand new way.

A little background will help me explain.  In high school I had the incredible fortune of finding myself in Gladys Robertson's public speaking class.  I would dare say that she made a huge impact in my life.  She taught me invaluable skills like research, organizing my thoughts, and confidently presenting information that I am passionate about.  She believed in me and pushed me to always do my best.  This helped shaped my decision to pursue a degree in Communications and fueled a passion in me to use those skills to make a positive impact in my world.  

In college I studied Communications and Sociology.  The skills and understanding that I gained through those studies gave me the desire to be a public communicator.  I didn't know how this would pan out or even if it would.  Many things have come across my path that gave me the opportunity to speak here and there, some job related and some not.  I had not really thought much about this somewhat hidden desire though.  Honestly, at times I had ideas in my head that I would be on a stage speaking to crowds of people on a regular basis as a conference speaker or something of that nature.  I had good intentions of leading people well and teaching them valuable things, but it was selfish.  It was about making a name for me on a big stage.  

As with many things in my life, I have come to realize that the desire in and of itself was not a bad thing.  As a matter of fact, the Lord has opened the door for just that in my life, but it has happened in His timing, His way, and with His focus.  I could have never imagined it to have panned out this way.  Sitting in the booth with those DJs today made me realize that the Lord has given me an incredible platform.  Our journey with Brinkley has given us an understanding that many people will never have.  

I get the privilege of sharing how our lives have been blessed through seemingly terrible circumstances.  I get to tell people how our lives have been forever changed (for the better).  I get to share about the incredible people that have been a part of our journey.  I get to be an encouragement to others who are walking similar journeys.  I get tell others how they are a part of or can become a part of many journeys like ours.   The thing is, none of it is about me.  Everything that I get to share is about others.  It's about Brinkley, our wonderful hospital and the other families treated there, and of course about God's faithfulness to us on this journey.  

Who would have ever thought that being the mom of a medically complex special needs child would turn out to be a dream come true?!  

Oh Happy Day

Today is quite the day around our house.  We're celebrating Brinkley's second birthday. 

What a journey we have been on over the last two years.  Through all of the uncertainty and craziness, we have been abundantly blessed.  It's hard to imagine our lives without Brinkley.  I think most people that meet him would agree with that statement.  His smiles and hugs can make the seriousness of the world fade away.  In those moments we are reminded that God is faithful, He loves His children, and He delights in blessing us.  

He continues to amaze and bless us with this little one.  During Brinkley's first year I spent most of my days clinging to the verse we had claimed for him: 

I could have never imagined all the things that were to follow, but God has been so faithful.  We have already seen our precious miracle touch the lives of many people.  If the doors that have been opened to us this far are any indication then Brinkley has A LOT more to come.  In his book "The Purpose Driven Life", Rick Warren says that God never wastes a hurt.  Brinkley's little life reminds me of the truth of that statement everyday.

After our roller coaster first year, you may wonder where we stand right now.  Here's a bit of a breakdown (as of our August doctor visits):

• Approximately 20lbs
• 27 inches long
• Crawling (his own one legged style and army style)
• Couch Cruising
• Almost standing
• Drinking from a straw
• Eating baby food
• Uses sign language (10+ signs)
• Says Mama, Dada, Hey, Yeah, Bye Bye, and Hat
• Loves the bath tub and swimming pool
• Cardiac status: Great and seeing doctor every 6 months with no meds
• Pulmonary status: Great and seeing doctor every 4 months with only PRN meds
• Gastric status: Released from doctor 
• Peds Surgery: Removed feeding tube in June and released from doctor
• Neurology status: Seeing doctor every 6 months as a precaution no meds
• Sleep Medicine: See doctor every 3-4 months with reduced settings on CPAP machine
• Endocrinology: Hypothyroidism being treated with daily meds and seeing doctor every 3 months
• ENT: Tonsils and adenoids removed in April and one ear has a tube.  Following us regularly to stay on top of potential hearing loss
• Eye Doctor: Seeing doctor once a year as a precaution
• Total surgeries 7 since birth 2 of them this year

As you can see, Brinkley is doing really well and has made so much progress.  We are currently waiting on some braces to be made for him.  His physical therapists think that these will help him walk independently fairly quickly.  Our goal is to having him walking confidently by Christmas.  

I am not sure what we did to deserve this incredible blessing.  Thank you Lord for allowing me to be a part of this story.  Happy Birthday Brinkley!

Today's mission

This mommy's mission today, assembling birthday gifts.  I can't believe my baby is about to be two. His eagerness to help just goes to show how far he's come in those two years!

Head on over to the Team Brinkley page to get details on our current BIG mission.

Our week ahead

We've got a lot going on this week.  Check out this post from the Team Brinkley site for details:  


Team Brinkley: The week ahead

Never Once

Have you ever heard a song for the hundredth time and for some reason it just strikes you differently this time?  Yeah, me too (at least I hope I'm not the only one)!  Monday I was driving the boys to a doctors appointment and a song came on the radio that we have sung in church quite a few times.  I've even heard it on the radio a lot, but for some reason it just resonated with me in a new way.  Here it is:

Standing on this mountain top
Looking just how far we've come
Knowing that for every step 
You were with us
Kneeling on this battleground
Seeing just how much You've done

Knowing every victory
Was Your power in us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful

Standing on this mountain top
Looking just how far we've come
Knowing that for every step
You were with us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
Every step we are breathing in Your grace
Evermore we'll be breathing out Your praise
You are faithful, God, You are faithful
It's true, You are faithful, God You are faithful

Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone

We know, You are faithful, God, You are faithful 

This song was published in 2011, but it seems like the songwriter has been walking through the last two years of my life with me.  With all of the uncertainty of this period, one thing was certain.  We NEVER walked alone.  At times we weren't even doing the walking, we were being carried.  

We were never promised an easy road, but we were promised to have a hand to hold (or to carry us as the case may be) along the way.   The Lord has proven himself faithful over and over again in my life and our journey with Brinkley's health has been no exception. How blessed I am to serve a faithful Father.  The story has not always played out the way that I may have chosen, but it has played out in such a way that all glory and honor are His; as it should be.

I am standing on His promise of faithfulness as we have hit a road block this week. Currently we are waiting out the healing process with Brinkley's g tube.   This is a very minor issue, but it is causing Brinkley a lot of pain and stress, which in turn causes this mommy stress.  After removing his tube last week, the site is not healing properly on its own and is going to require our surgeon to intervene.  Brinkley will be having a minor surgery for the repair.  This would typically be an outpatient procedure, but due to his history he will stay overnight for observation.  

The stressful part is that our surgeon is currently away. He will not be back and in the OR until June 23rd.  Brinkley is on his schedule for that day.  We have a wonderful surgeon and would feel more comfortable waiting for him to do the surgery rather than one of his partners, if we can hold out.  Please pray that we can keep Brinkley comfortable while we wait and that I will have the wisdom to know if the time comes for another doctor to intervene.

We know that we are not alone in this and that the Lord will hold us in His perfect peace while we wait.  

And the verdict is...

The boys made the long anticipated visit to Dr Markowitz this morning.  He agreed that Reese's symptoms could go along with Celiac's Disease and sent us for lab work.  We should have that back in a week or two and will make a plan then.  As frustrating as specialty diets can be, it would be a blessing to have an answer for all of the issues that we have been having with Reese.  A plan (no matter how frustrating) is better than no plan.  For the first two years of life Reese was on a milk free diet, so these things are no stranger to us and we can make it work.

As for Brinkley, I was quite impressed to see that he was 18 pounds and 5 1/4 ounces.  Dr Markowitz was pleased with his weight gain (finally!) and said that he is approaching the 10th percentile on the Down Syndrome chart.  WOW!  Who would have ever thought that would be music to a mom's ears.  This little guy has struggled to get to the 1st and 2nd percentiles.  

I was proud to tell Dr Markowitz that Brinkley has been eating well.  Yes, he has even been spoon feeding!  There were no signs of re flux after a few months of no meds and the new formula that he is on has done away with the stomach upset we had been seeing.

   
Next came the million dollar question.... When can the tube come out?  To my surprise the answer was, "now"!  Not as in, "call Dr Gates and make an appointment for him to remove it", but as in "take it out at home, cover it with gauze for a couple of days."  He said that it will leak for 24 -48 hours then all should be well.  If it has not closed completely or is still leaking then we'll call Dr Gates, our peds surgeon, to have him stitch it up.  

As a precaution I have put in a call to Dr Gates office.  His nurse Kim is incredibly helpful and will give me the pep talk I need to feel confident in handling this myself.  

On top of that, Dr Markowitz said that there is not really any reason that he needs to see us again.  What?  Did I hear that correctly?  Is a doctor releasing us from care?  Am I really only getting good news from this visit?

I have to admit that when he offered us an appointment in six months I couldn't turn it down.  Since Brinkley is just starting to eat solids I would like to be on the patient list in case we run in to any allergy issues.  So, this proved to be a great visit!  Thanks for praying for us!  Aside from his pacemaker, Brinkley will no longer be considered medically complex now!  How's that for making progress?!