Throwback Thursday

So today has not been our general, run of the mill, Thursday.  First of all, Bryan is out of the country.  He and our church's worship leader are serving in Guatemala this week.  They are part of a team from Take Heart Ministries that is hosting a Christmas celebration for the children of Casa Shalom Orphanage.  

Bryan normally takes Reese to school.  Since he is away, I have been doing drop off and pick up from school.  This morning I quickly picked Brinkley up out of the bed, changed his diaper and stuck him in the car for the trip to school.  He was still in pj's and had not eaten breakfast.  Thinking this would be a quick trip I didn't even grab the diaper bag.  The plan was to return home, feed him, dress him, and get to therapy at 9:15 am.  Let me tell you, that didn't happen.  

As I was driving through the car line I noticed that the man behind me was getting out of his car and walking toward mine.  I couldn't think of any reason I would have caused road rage and I wasn't holding up the line, so I was a little concerned.  I rolled down the window and the gentleman told me that my back passenger side tire was going flat.  This was no surprise because Reese has been very adamant that he poked a hole in the tire over the weekend.  He has diligently checked the tire everyday waiting to see the "fruits of his labor".  He wondered what would happen if he stuck a thumb tack in the tire and chose to find out for himself rather than just asking about it.  

There is a gas station just down the road from the school so I went straight there to attempt to air in the tire.  I put my $0.75 in the machine and connected the hose to my tire.  No luck!  The nozzle on the hose was broken so no air was going into the tire at all.   I have never changed a tire in my life.  Though I'm sure that I could have figured it out, I wasn't convinced that I could actually manage the tires.  I called my sister-in-law to ask where to take to tire to have it fixed, but then couldn't get her back on the phone to let her know I needed more help.  

Next up was my uncle.  I wasn't sure what time he goes to work, but they live relatively close by to where I was so it was worth a shot.  Unfortunately, he had already gone to work and was on a job in a town an hour or more away.  However, he had a coworker working in the area and was sending him to help me.  In the meantime, I got sister-in-law number 2 on the phone and she was sending her husband to help.  Just after I got off the phone with him my uncle's coworker arrived.  

The brief version, it took a while to get the car situated and get access to the spare.  Got the spare on, it was flatter than the original tire.  The kind gentleman was going to follow me to the gas station a little further up the road to pump up the spare, but we couldn't locate his truck keys.  We looked for quiet a while.  In the meantime, several phone calls were made and my cousin was on his way to get us.  

Brinkley was screaming like a crazy man.  I had planned to feed him when we got home, which by this time was more than an hour earlier.  He was cold with only his pj's and a blanket and I left the diaper bag at home.  Translation: no food, no drinks, no snacks, and no diapers.  

After a lot of searching we located the keys in a very obscure place and my cousin arrived to pick up Brinkley and I.  Andy, my cousin, took us to pick up Bryan's car.  Between there and home (5 minutes) Brinkley managed to find a glass of water and pour it all over himself and his blanket.  He was soaked!  My uncle plans to deal with the tire and move my car from the gas station later today.  

In honor of Andy saving the day I'm devoting my throwback Thursday to him.  

It doesn't seem like this little guy should be old enough to be coming to my rescue.  This was the two of us at a wedding in 2002 or 2003.  He'll be 20 next month!  Thanks Andy you are the hero of the day!  

I left home at 7:30 am this morning to drop Reese off and made it back home around 10:15 am.  That was one LONG trip to school!  

In case you are wondering, Brinkley didn't make it to therapy today.  

Isaac's Christmas Wish

What a privilege it was to be a part of Isaac's Christmas wish.  I could have never imagined when we made the drive to Cincinnati to help deliver these gifts that we would have our own child on the receiving end a few years later. 


Holidays are tough for families who are hospitalized.  Many of these families are far from home and their families.  Unless you have been on the receiving end, you can't imagine the impact that a small gift can make on these families.  


This year Bryan and I will be delivering gifts to children at the Greenville Children's Hospital on December 23rd with Happy Wheels.  If your family would like to contribute a toy for a child (ages birth-18) contact me and I will make arrangements to get them from you.  Happy Wheels is a 501c3, so all gifts are tax deductible.  Please consider giving in honor of Brinkley and Isaac.  


Praise the Lord that both boys (Isaac and Brinkley) are doing well and plan to be home with their families this Christmas!

Down Syndrome Awareness Month

It's Down Syndrome Awareness Month and we want to help you learn more about DS.

If you want to follow our daily posts be sure to "like" Team Brinkley on facebook.  You can find it here.

Here's a recap of what we've shared so far:

We've also shared these two special stories:

Meet Carter Murai.  He's a 7 year old that is making history as the first young model with DS to speak in a marketing campaign.  Here's his commercial:

Tim Harris is a 28 year old man who was voted Homecoming King and Student of the Year when he graduated from high school. Tim graduated from Eastern New Mexico University where he studied Food Service. He has traveled the world on a sailboat. Early in his teen years, Tim began to dream of owning his own restaurant. In 2010 that dream became a reality with the opening of Tim's Place. You can learn more about Tim here:

http://timtheman.com/

or here:
http://timsplaceabq.com/

Family-versary

In the midst of our craziness last week I nearly forgot about a super important milestone for our family.  Sunday marked our 3rd family-versary.  What is a family-versary you ask? It's the anniversary of the day that we finalized Reese's adoption and he legally became a Holder.  What a blessing God gave us nearly six years ago when we became the foster parents of the most beautiful six month old baby boy you've ever seen!  It took nearly three years to finalize his adoption, but we never doubted for a moment that he was ours.  The Lord's hand was so evident through the whole journey.  

Our family has changed a lot over the last six years.  The top picture is in the court room just after Judge Anderson declared Reese officially adopted (September 28, 2011).  The next row is the day Reese came home (December 22, 2008) and early 2010.  The bottom row in the day that Reese met Brinkley (September 9, 2012) and just after we brought Brinkley home in November 2012.  

Reese is not only a blessing to us, but he is one terrific big brother!  I love seeing my boys play together.  Their love for each other shows in everything that they do.  Reese has a heart like none other and is constantly thinking of his baby brother.  He always wants Brinkley to be included in the things that we do.  He hurts for Brinkley and worries about him when they are not together.  

Reese is truly one of a kind and I could not imagine our family without him.  He is endearing and one of the most loving children you will ever meet.  I love his heart for others.  He is very kind and compassionate and you can't help but love that sweet southern drawl.  

Mommy loves you Reese and is honored and blessed that God chose us to be your forever family!

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?!

Being Hopeful

The craziness of the end of school has taken over at our house.  We have been so busy with all of the things that come with this time of year.  We're still here and doing pretty well.  Brinkley had a recent short hospital stay due to Rhinovirus (common cold), but otherwise we are continuing to feel more like a typical family everyday.  I am very hopeful that this week we are moving one step even closer to being non medically complex.  

Tuesday both of my boys will be seeing the Gastroenterologist (GI).  We are hoping to have Reese tested for Celiac's Disease as it could possibly be an underlying cause of several issues that he has had.  As for Brinkley, this is his regular check up.  My hope and prayer is that Dr Markowitz will agree that it is time to remove his G-tube.    Over the last few months we have seen his surgeon, dietitian, cardiologist, ENT, and endocrinologist and all agree that they are fine with the tube being removed as we no longer need it and we have not used it in 10 months.  The GI has to give the final decision, but I am hoping that the opinion of the other doctors will help him with the decision.  

Please join us in praying that he will agree if the time is right!  Stay tuned as Brinkley has had quite the social life lately and I plenty to share.

It happened

As a parent there are things that you know are coming.  Maybe it's a blow out diaper in public, pointing out someone in a crowd and loudly saying something inappropriate about them, the first day of school, the last day of school, the first girlfriend, or the walk down the aisle.  Some of the things bring fear into our hearts, many bring tears, and all bring a new understanding of our child and a new level in our relationship with them.  When you add the blessing of adoption to that equation it creates several more of these moments.  

At some point adopted children become curious about their beginnings and their birth families.  From the moment you sign your name on the application you begin to anticipate these moments and wonder how you will handle them.  Sometimes you dread the conversations that you know will have to happen when your children come from a tough situation (I've got a few of those that I am not looking forward to).  For me, it happened yesterday.  The first of the questions got asked.

Our church is about 40 minutes from our house and Reese likes to ambush me every Sunday morning with a barrage of questions.  Usually I can answer his questions and feel somewhat confident in my answers.  Other times he asks questions that are far beyond what you would expect from a five year old.  Yesterday was one of those days.  He began the Q & A time with asking if there would be fun things in heaven.  I assured him that heaven would be the most fun place ever to which he responded, "will Jesus take me to Frankie's Fun Park?"  Hoping this would be the end of our theology lesson for the morning he moved on to discussing if the snake in Adam and Eve would be in heaven.  

I tried my best to frame my responses in a way that was clear to him and accurate.  As if that weren't hard enough, then he sprang a big one on me out of the blue.  "Mommy, was I in your tummy when I was a baby?"  What?!  Seriously, you are asking this question now?  He totally ruined the beautiful scene I had in my head of this moment.  He was supposed to ask this question during my pregnancy and as a family we would all curl up on the couch together and read a beautiful story book about how adopted children join their families.  This can't be happening now!  I can't even look him in the face as we discuss this.  What was I supposed to do?

If there is anything that I have learned in my nearly six years of parenting (especially through the last two years) it's that kids are unpredictable and do things in their own time and way.  The best thing that I can do is be flexible and roll with it.  Thankfully, this was one of those moments that we as a family had laid a foundation for so that we could be successful.  

We have talked about adoption since the day Reese came home.  Our goal has always been to be open and honest with him.  Yes, there are things about his birth story that he is too young to understand, but we are honest with the things that are developmental appropriate.  If you ask Reese what it means to be adopted he will tell you that children are adopted when their first mommy and daddy can't take care of them or keep them safe.  They are adopted by a new mommy and daddy that can take care of them and keep them safe.  So when the question came the first thing I did was ask him a question.  I asked him what it means to be adopted.  After he answered I told him that he was in the first mommy's tummy not mine.  He was quite happy with that answer and reiterated what adoption means and moved on to the next topic.  

Not exactly the way I pictured the discussion in my head, but just what he needed.  I know this is a sign that these talks will probably start happening more frequently, but I think I'm ready.  I may not have the perfect answers, or any answers for that matter, but the Lord will give me what Reese needs at that moment.  

If you are an adoptive parent, I would encourage you to talk about the concept of adoption with your child regularly.  That understanding will make responding in these moments so much easier!

Calling All NICU Moms

Showing Some Tubie Love

Not only is this week CHD Awareness Week, it is also Feeding Tube Awareness Week.  Due to Brinkley's CHD he also required a feeding tube.  It is not uncommon for children with CHD's to require feeding tubes due to the fact that they become breathless trying to coordinate the suck, swallow, breathe cycle that is required during feeding.  Generally these children will start with an NG tube or something similar.  This is a nasogastric tube and is inserted through the nose (hence naso) down into the stomach (gastric).  

The NG tube is often times temporary.  After some time, it was determined that Brinkley would benefit from a G-tube since it was becoming obvious that his feeding issues were not going to be resolved quickly.  I was devastated by the news that my 5 week old baby was going to undergo surgery for the tube to be placed.  I was scared to death and thought that it would be so difficult to care for and manage a tube.  Thankfully, nurse Kim who often took care of Brinkley on weekends was the pediatric surgeon's primary nurse during the week.  She was a wealth of knowledge about feeding tubes and walked me through the process and even brought in samples to show me what it would look like and how I would care for it at home.  This eased my mind a little and I realized that agreeing to the surgery may very well be the only way that Brinkley was going to be discharged from the NICU anytime soon.  On October 11, 2012 my tiny little guy underwent his first surgery to have his g-tube placed.  

Surgically placed tubes are usually either G-tubes or GJ-tubes.  A Gastrostromy tube (G-Tube) is placed in the lower left abdomen and goes directly into the stomach.  The Gastro-jujunum tube (GJ tube) is also placed in the lower left abdomen through the stomach but passes through the stomach and empties into the jujunum (small intestine) bypassing the stomach.  Brinkley's initial tube was long and was not removable from the skin.  









 You can't see it in these pictures, but the long tube had a port on the end that you would connect to the tube coming from the pump.  All meds and food/formula were put through the tube.  A few days before our NICU discharge a home health nurse came and trained us on using the type of pump that we would be taking home.  Not being good with math, I was a little intimidated by the "formulas" for figuring out the settings to program into the pump.  Fortunately, our NICU nurses gave me plenty of help.  I also learned really quickly that I could make the pump work a lot better for us by simply reading the instruction manual and learning about features that the home health nurse never told us about.  I also got quite good at figuring out how to "hide" the long part of the tube in his clothes.

I don't remember exactly how long it was, but after a few months (about 3 months) the long tube was removed and a button was put in its place.  The button is more flush to the skin and does not have the tube hanging from it.  It makes dressing much easier and it has to be more comfortable for the patient.    With the button, you put a connector into the button and then connect the pump to that, or push the meds through the connector.  

The button can be irritating to the skin, so many doctors recommend buffering it from the skin.  I have chosen to do this with tube pads.  There are several places that you can order them from and they can be plain or super cute.  Of course, I have opted for the super cute ones!  My thought is that if you need the tube, you might as well accessorize it.  (Especially since I don't have any girls to buy accessories for.)  

These are just a few of the button covers that we have for Brinkley.

When Brinkley's tube was placed I really wished that I had a visual to get a better idea of what to expect.  With this in mind Bryan and I have taken a few photos and made a short (very basic, nothing fancy) video about using the tube.  Before following the steps on the video, you will need to collect your needed items (connector, meds, syringes, feedingbag, etc.)

 
These are the items that we need on a nightly basis for Brinkley.  You'll see his meds and their respective syringes, a connector, sterile water, and a syringe for the sterile water. I've included a close up of the connector.  I would recommend that you ask for connectors that have med ports.  This means that there is a large opening and a small opening on the end of the connector.

Here is our attempt to walk you through the steps of using the tube.  The best part is the super cute model that we used!

I truly hope that this is helpful for someone and that it helps to ease your nerves about having to use a tube.  It is not at all like I had thought and honestly isn't that big of a deal.  The worst part was figuring out how to hide the long tube in his clothes and being careful not to catch it on anything.  Buttons do have to be changed out periodically.  Brinkley is on a 3 month schedule and they occasionally do malfunction or pull out.  I have had to learn to replace it on my own.  This was a TERRIFYING thought to me, but Nurse Kim made sure that I was more than prepared and now I do it like a champ in less than 2 or 3 minutes.  

I hope that you don't ever need to know how to do this, but if you do or if someone you know does, please pass this on.  Feel free to contact me if I can help with more info or more photos.  My experience isn't worth much if I don't share it to help someone else!

Happy "New" Heart Day Brinkley!

If you follow me on Facebook or Instagram you may have noticed that this week is Congenital Heart Defect Awareness week.  I have been posting facts about CHD's each day for the last two weeks.  CHD is something that affects our family very closely.  As a matter of fact this week happens to be the anniversary of Brinkley's second open heart surgery.  

Last year at almost this exact time, this is where I found myself and my 5 month old son.  At 1:15 on 2/13/13 we had an appointment with pulmonology for Brinkley to receive his RSV vaccine.  The days leading up to this appointment his 02 sats had been fluctuating greatly.  The same happened in the pulmonology office as well as a heart rate in the 40's.  We were scheduled to leave pulmonology and go downstairs for a routine echo in our cardiology office.  It became quite clear that the Pulmonologist was very concerned with Brinkley's vitals and he called the cardiology office and insisted that we needed to be seen by the doctor rather than just the tech doing the echo.  Our doctor was not in the office and the only one on hand had never dealt with us before.  

We proceeded downstairs to be quickly met by Dr Lucas and even more quickly swept away to the echo room.  This echo was quite short and was followed by a conversation with the doctor that we would be heading straight to the PICU and should expect to be flown to MUSC before the end of the day.  Brinkley had gone into complete heart block and needed immediate surgery.  I'm not sure that I realized how serious the situation was at the time.  Complete heart block means that the top and bottom chambers of the heart are not working together and it is not uncommon for this to be fatal.  

We spent about 12 hours in the PICU at GHS while waiting for a flight to MUSC.  About 4am we were airlifted to MUSC and within a few hours Brinkley was taken back for his second OHS.  This time his initial TOF repair was revised and a pacemaker was placed.  If you are thinking about the dates, Brinkley's "new" heart was placed on Valentine's Day.

Let me just say what a difference a year makes!  Today Brinkley is missing therapy due to a snowstorm, but he would normally be amazing us all on Thursday morning with his attempts to walk and crawl and his awesome progress in OT.  Right now he is crawling around the playroom eating every toy he can get his hands on.  It's hard to believe that the fragile little guy in the picture above is the feisty, wild man that we live with today.  He is so full of life and we have an amazing team of doctors and therapists to thank for helping us get to this point.  

I know at least three other local moms that have had to leave their babies in the hands of the MUSC team over the last couple of weeks.  I write this to hopefully encourage you and to let you know that I've been there too.  Those moments and days can be so overwhelming and down right terrifying.  We prayed (and continue to) that God would give us just the right team to help Brinkley and He was faithful.  It has not been an easy road and there have been many set backs, but God is good and we see His hand in Brinkley's life everyday.  

Many people ask about Brinkley's scars and I wondered about scars as well when we started this journey.  I just noticed last night how well he has healed and I wanted to share it as encouragement as well.  

This is the scar following the second surgery.

Scar as of 2/13/14

Sometimes I forget

Sidekick, that's how I often refer to Brinkley.  Now that we don't have a home health nurse it isn't often that you see me without this little smile.  That smile gets us noticed everywhere we go.  Most people can not resist stopping and speaking to Brinkley, especially if he throws up his tiny hand and waves.  (That little wave makes the ladies melt!)  

This time last year I couldn't imagine all of the things that we are able to go out and do now.  For so long it seemed like our only public outings would be to medical appointments.  Many weeks we had multiple appointments each day.  Just as the other moms in my support network told me, things have finally slowed down.  Brinkley still has standing therapy appointments twice a week, but the doctor visits are much fewer and farther between.  (We only have one scheduled visit this month and that is for his RSV vaccine.)

Things seem so much more "normal" now and I have finally gotten to the point where I don't think about the developmental and health issues on a daily basis.  As a matter of fact, I don't even think about Down Syndrome most days.  Brinkley is just a baby, my baby.  Like any baby, we are working on learning to drink from a cup and eat from a spoon.  He's working on crawling, standing, and walking.  Our timing may be off from a typical child, but we are working on Brinkley's time frame and that's great!  

I guess that's why I was really shocked Sunday night when the topic of Down Syndrome came up multiple times.  That evening we decided to take advantage of a gift card we had received and headed to Jason's Deli for dinner.  While we were eating I heard a man behind me say, "the baby in the high chair behind you has down syndrome."  

What?  How did he know that?  

I wondered what tipped him off and if he would say something to us.  He and his wife did stop and speak to us before they left.  She is the caretaker for an 11 year old girl with Down's.  They were very nice and made some kind remarks about Brinkley.  I just couldn't get past wondering how they knew.  We left Jason's Deli and went to get groceries at Trader Joe's.  While waiting for Bryan to grab a last minute item an employee struck up a conversation with me about Brinkley.  I told her how old he was and that he was a preemie.  Her response, "my good friend has a son with Trisomy 21."  She went on to tell me a little about Riley.  Again, I was completely caught off guard.  I couldn't imagine how she knew he had DS.  

Don't get me wrong, I am well aware that there are physical characteristics of DS that are fairly easy to spot.  I'm sure that those sweet little almond eyes were probably a clue.  It could have even been the fact that his features are fairly small.  I don't know for sure, but what I do know is that this experience was a good lesson for me.  This is one that I want to share with new parents of extra special kids.  It may take some time, but life will settle down.  It will settle down and you will find your new normal.  That new normal may even bring days that you forget (maybe for just a moment) that your child isn't typical.  

Forgetting just may be the best thing we can do for our kids.  When we look past their disabilities we push them to reach their full potential.  We move away from limiting them and allowing them (even if subconsciously) to limit themselves.

Here's to forgetting!