Saturday, December 3, 2016

Stones of Rememberance

In the Old Testament God often instructed people to leave visual reminders when He had done something significant in their lives.  In Joshua 4 he had the Israelites leave stones at the Jordan River.  Verse 6 says, "They will be a sign among you. In the future your children will ask you, ‘What do these rocks mean?’" These stones of remembrance were intended to not only remind them but to also remind those that came after them.  

These days the Lord may not tell us to literally leave stones of remembrance but He does give us visual reminders of His faithfulness.  Today Facebook served as one of those reminders to me.  As I was looking at my memories I found this: 

A flood of emotions came over me as I thought about that day.  As if a complicated pregnancy, early emergency c-section, a complicated prenatal diagnosis, and seven weeks in the NICU weren't enough Brinkley decided to surprise us with the need for emergency open heart surgery at eleven weeks old.  There was so much that happened over the next five weeks that would test my faith and prove to me over and over again just how faithful my Lord really is.  (You can find many of my thoughts about that here on the blog in the December 2012 section.)

It was what I saw that I had posted a few hours earlier that day that brought me to tears. Over the last four years, I have thought about that day many times and have reread these statuses many times but it wasn't until today that I noticed this: 


I often listen to James McDonald's teaching on the radio and must have been that morning.  This status was followed by a picture taken at Reese's preschool Christmas program rehearsal and a check-in at the cardiologist's office.  

I am certain that I had no idea how significant this thought would become in my life.  I have heard that thought many times.  Sometimes it is worded a little differently, but the sentiment is always the same.  The tears flowed as I thought of all the ways that Brinkley's unexpected journey has been used so far.  To think of how much my life has changed (for the better) is almost overwhelming.  The faithfulness of the Lord never ceases to amaze me. 

While I may have Facebook memories to serve as stones of remembrance for me, Brinkley has the permanent visible scars.  His trunk may be covered in marks and scars but each one is a story.  A story of the faithfulness of my Lord.  A story of the power of prayer.  A story of strength and determination.  A story that will one day be his to share in his own words.  For the time being, I'll continue to share every chance I have.  I'll continue to walk through each door that is opened to walk with other families through their journey. I'll continue to share the tiny bundle of joy and blessing that I am blessed to have call me momma.  I'll continue to share until the day comes that he asks about his "stones of remembrance" and in turn shares on his own.

Wednesday, November 2, 2016

A Dream Coming True

In September my high school class held its 20th reunion.  I was not able to attend the reunion, but it did stir up a lot of memories of my high school years.  The things that stand out to me the most were the prom, dance recitals, church basketball, my sweet 16 birthday party, and youth retreats.  To this day when I walk into the Anderson Civic Center or the Fine Arts Center at Anderson University the memories flood in of some many fun nights that I shared with my friends.  For many, too many, children these are experiences that they will never have.  Through no fault of their own, they live in circumstances that make these rites of passage unattainable.  

This fact became a reality to me about five years ago.  Our niece was in the 5th grade at the time and was planning for the big field trip to Washington, DC.  We had participated in several fundraisers that she and her classmates were doing to raise the needed money for the trip.  At that time I was involved with a local foster parent association and was responsible for the emails.  An email came to me from a caseworker explaining that a child in care wanted to participate in this trip but the foster mom could not pay the full amount.  The caseworker was asking for assistance to cover the remaining cost for the child.  After reaching out to a few people I was able to get the needed funds and the child was able to participate in what was likely a once in a lifetime experience.  

It was that day that the wheels in my head and heart started turning and a dream was born.  I didn't know when or how, but I knew that someday I would make these dreams a reality for kids in need.  Over the last few years that dream continued to grow and I started putting things down on paper and figuring out how to make it happen.  In February of this year, I contacted a consulting firm and officially started the process.  I reached out to a few like minded people and created a board of directors.  

On September 28, 2016 (Reese's adoption day anniversary) we received official notification from the IRS that we have been approved as a 501(c)3.  It is with great pleasure that I present to you: 

A Night To Remember exists to create positive, memorable experiences that would otherwise be unattainable for children with special needs or living in the foster care system.  Our goal is to provide these children with typical experiences such as birthday parties, scholarships to participate in recreational activities, provide equipment for recreational activities, prom, field trips, youth trips, etc.  

I will gladly share more details with you and tell you how you can be involved.  We are currently building our website and Facebook pages.  You can like our Facebook page and follow us as we take the next few weeks to get ourselves established and prepare to fundraise this winter.  

One way that you can support us is by purchasing a 2017 calendar featuring the very children we are seeking to reach out to.  Our calendar is full of former foster children and children who have special needs.  The calendars are $10 and we will be taking preorders through Wednesday, November 23rd.  Calendars should be available for delivery the first week of December.  The price may increase for calendars ordered after the 11/23 deadline.  Here's a little preview of some of the sweet faces you will be able to admire all year long: 

Saturday, September 10, 2016

Parenting Win

There are plenty of days that I feel like a total failure at parenting.  Have you had those days?  Of course you have?!?  (Please tell me you have!)  Then there are days like today.  Days when your kids make great decisions and prove that they are listening and you aren't a total failure.  Days when you raise your hands and praise the Lord (while doing a happy dance) because they got it!  It may have been one tiny little thing, but they got it!  It's that glimmer of hope that you are raising someone who will be a compassionate, considerate, and upstanding member of society.   

Most days I wonder if my children will ever be able to be productive members of society because they seem to lose their minds when we go out in public.  Every time is like the very first time.  This morning we had family pictures made and, of course, an unnamed child had a meltdown in the car as the photographer was pulling in.  After the photo session, we went to breakfast at one of our regular spots.  One child was throwing crayons and menus, sneaking things from the apron of every waitress that walked by, and licking the table.  (I'll let you guess which child.)  

In the car, we told Reese about the plan to take him to the Furman Soccer game tonight.  He has become interested in soccer and we thought it would be a fun (and cheap*) outing for a dad date.  When we got home we sat down with his spending bank.  We settled up a debt he was responsible for and started talking about the soccer game.  Bryan agreed that he would buy dinner but Reese was responsible for the tickets to the game and anything extra at the game.  The tickets were $4 each and we told him to expect a drink to be $2-$3.  I asked him how much money he wanted me to take out of the bank and he said $6. We thought he misunderstood and explained that the tickets would be $8.  He said, "I know, I want $6 extra. Daddy will need a drink too."  

He's ready in his Furman purple!

Despite the days he tells me, "you are the meanest mom in the history of mean moms," days like today remind me that he does have a precious tender heart.  It reminds me that the Lord is in control and is molding his heart to be like His. The days he asks to take extra money so that he can treat me to a snow cone show me that he loves this meanest of mean moms. We must be doing something right!

As I was typing this came through on my phone:

We are clueless about soccer, but Dad is smiling and letting him enjoy!
*Side note: Furman has athletic teams in most popular sports and the tickets are incredibly cheap.  Many don't charge for kids under 12 at all and only $4-$20 for adults.  It's a great way to introduce kids to college sports.  We love to make a day of it and picnic and walk on the trails around the lake. 


Tuesday, September 6, 2016

To Brinkley On Your Birthday

Four years ago we began a journey that I could have never imagined.  For thirty-three long weeks I had anticipated the day that you would join us.  Many (too many to count) days a sickness, two (sometimes more) doctor appointments every week, and countless hours of prayer and research went into those thirty-three weeks.  

There were days that I was unsure that I could do this.  The day the ultrasound tech saw that something wasn't just right with your heart.  The day Dr. Fredrick told us that there was a pretty significant chance that you had those precious extra chromosomes.  The day the genetic counselor called and confirmed those suspicions.  The day Dr. Raunikar told us that not only did you have special chromosomes, but you had a special heart too.  That was the day he prayed with us and let us know that God was right there, this was not a surprise to Him, He has a purpose for you, and that we would be supported the entire way.  (That was a really scary one!)  

So many of those biweekly appointments brought new concerns about how long you were going to hold out.  There was a day I asked Dr. Nuthalapaty how long he thought you would be able to hold on and he told me that I needed to pray that we made through that weekend.  Well, you made it through that weekend but at thirty-three weeks the doctors were afraid that it was all becoming too much for you and they admitted me to be on bed rest.  We officially hit the thirty-four-week mark (6 weeks early) and it was time for your arrival.  Dr. Ruggieri came into my room about 11pm the first night and explained to me that you probably would not cry or breathe on your own.  He told me about all the people that would be in the operating room and who would be caring for you.  He told me that they would quickly whisk you away and get you to a special area called the NICU.  The NICU is a special area where they gave you some extra time and attention that was needed to give you the best start possible.  

What he didn't tell me is that you would defy the odds!  That from day one you would have your own plan and would do things your own way.  To everyone's surprise, you came out crying and breathing on your own.  That tiny little cry brought tears to my eyes.  That cry was so much more.  It was just one of the many many ways that God reminded us that you are His and that He alone is in control.  It was a reminder of His goodness and the fact that indeed, He has a mighty purpose for your life.  

You were born on a Thursday and that Sunday they moved you from NICU 1 (where the sickest babies are) to NICU 2 (where the babies are making lots of progress and learning to eat and grow without quite as much attention).  When you moved into your private room I posted this own your wall:  

  Jeremiah 1:5    
  Before I made you in your mother’s womb, I chose you.
   Before you were born, I set you apart for a special work.

I had no idea that even as a 3lb 2.2oz tiny little guy that you would take this so seriously.  You have never wasted any time proving that He truly does have a special work for you.  You are always determined (often times determined to be mischevious), do your best, and push harder than anyone I know.  All the while you smile, laugh, love, and give "ugs" to everyone that crosses your path in the process.  Your sweet smile, infectious laugh, and exuberance infect everyone you come in contact with in the very best way.   

You push me to learn more, pray more, work harder, love more, give more, and push through every day.  You make me a better person.  You and your brother have given me a new passion and helped me find a purpose in this stage of my life.  Thank you for pushing me further into my Father's arms as I could not make it through this journey without the wisdom, love, and support that He alone can give.  

I am not sure what I ever did to deserve the privilege of being the mother of an extra special child, but I wouldn't trade it for the world.  I wouldn't give up or change one day of this journey.  I wouldn't change a thing about you and I can't wait to see who you become.  I have no doubt it will be extraordinary.  

As we celebrate four years of you today, my prayer is that you would never forget the sentiment that you so often sing, "it's who I am, it's who I am and I'm loved by You."  He is your Good Good Father and you are so loved by Him.  Despite the unknowns of what may come in your future, I know one thing for sure.  He has very special plans for you and you are loved beyond all measure! What a privilege it is to be a part of the story!

Happy Birthday Brink!  

Sunday, August 21, 2016

Quick prayer request

I'm sorry it's been a while.  We've had many many issues with our internet service lately and are now going on week three with no service at all.  I've got plenty to share but it will have to wait until I have wi-fi.  I've already used far more than my fair share of the church's data allowance on our cell phone plan.  Here's a quick update though.

Yesterday I found myself at the pediatrician's office with Brinkley.  Thankfully, our doctor was the one doing weekend duty and we are only dealing with pink eye.  Facebook reminded me that on the same day last year we made a sick visit to her office and promptly were sent to the ER and admitted with possible pneumonia.  Iy probably seems crazy, but I'm so thankful for typical childhood problems.  We've dealt with so many serious things over the last for years (and so many families deal with far more serious things than we have).  With that in mind, I'd like to ask you to pray for Brink and our care team.  We are currently going through a series of lab tests.  The goal is to determine if he has a deficient immune system and if so the specific issues involved.  We are hoping this will give us insight into how to keep him healthy.  He will have more labs this week.  Please pray specifically that they are able to get what they need on the first try and that there will not be complications with the blood draw.  Also please pray for wisdom as his new doctor (#15) as he interprets the results and makes a plan for Brink.

Thursday, May 26, 2016

Picture Day Perfection

There is a children's book that Reese loves.  It's called Picture Day Perfection.  Here's the Amazon description of the book: 

It’s picture day, and the boy at the center of this charming picture book wants to make sure his picture is perfect. It seems as though everything’s going wrong for him—he has bedhead, a stained shirt, and a big scowl on his face. But when he goes up for his picture, he thinks about his terrible appearance, and he smiles—because he secretly wants his picture to be the worst ever taken! But just as he smiles, the photo is snapped and his plan is ruined—the photo looks great.

If you follow me on Facebook you have probably seen my posts about Reese's school/group pictures in the past.  I'm pretty certain that the young man in this story is his idol.  It's become a somewhat of a joke to anticipate just how crazy the next picture proofs will be.  Imagine my surprise when his 2nd grade Spring pictures came home last week and this is what I saw: 

There's hope that he'll reclaim his throne as the king of crazy school/group pictures in 3rd-grade!  

Friday, March 25, 2016

CFA, BBQ, and DS

Social media is a cultural phenomenon that often gets a bad rap.  I am well aware of the dangers of bullies, creeps, and just down nasty things that you can encounter on social media.  Many people are leery of putting too much info out there (rightfully so) and some don't think twice about spilling everything.  (Think teenager sharing photos of themselves smoking pot or underage drinking and disclosing the location where such things are happening).  Despite what anyone thinks, nothing and I do mean nothing, that you put on social media is private.  

Needless to say, social media is a powerful thing.  Properly harnessed can be used for a lot of good.  I love the ability to keep up with my college friends that live all over the world.  I love being able to quickly get the word out about needs that arise in our community, church, or circle of friends.  As the parent of a special needs child, social media has been the main way that I have built my support system for this journey.  

What a blessing it has been to connect with families from all over the world who also have loved ones with an extra chromosome.  Though we haven't met most of them face-to-face, we are a family know that we can count on each other for love, advice, and support on our journey.  Not only has social media been a great place to connect, it has also been a great way to spread awareness.  I know that my "friend" base is small but word travels fast on the internet.  

This principal is one that I have experienced in a new and real way this week.  Monday (3/21) was World Down Syndrome Day and many families posted photos and videos of their awesome kiddos rocking extra chromosomes in an attempt to spread awareness that our kids are more alike than different.  We even got in on the action. 

What I never expected was that something totally unrelated to WDSD would become my biggest contribution to bringing awareness.  Brinkley loves Chick-Fil-A and barbecue sauce.  Tuesday night we ate dinner at CFA and he was not going to let a drop of his BBQ sauce go to waste.  I thought it was funny and started recording him.  Who knew lots of people would agree?!?!  As of right now, the video has had more than 5,500 views on Instagram.  I have no idea how it has been circulated so much, but I won't complain.  I have gained many new followers and people have gone back through my other photos and videos liking many of them as well.  People are commenting and thanking me for sharing our journey.  

My prayer is that Brinkley will be an encouragement to others on this journey with us.  We want them to see that there is joy in this journey.  Who could have ever imagined that a little guy and some CFA BBQ sauce could reach so many people?  And just in case anyone from Chick-Fil-A sees this, he'll gladly advertise for you if you'll pay him in nuggets and milkshakes!

In case you missed it, here's the BBQ sauce video: 

Monday, February 29, 2016

Lessons from the baby monitor

5:28 a.m. Sunday is not exactly my preferred call time.  As any parent knows, though, you can never predict or control the time your children decide to wake up.  Normally on a Sunday morning, the boys and I don't need to be up before 8:30 a.m. (not that Reese or I EVER sleep that late).  

Saturday night I put Brinkley to bed without his CPAP machine, so he was not confined to his bed.  That being sad, the tiny little voice coming through the baby monitor jolted me out of bed for fear of what kind of destruction I would find in his bedroom if I didn't attend to him quickly.  Diapers and diaper cream covering the room, dressers and bookshelves emptied, these are surprises that have welcomed me into his room before and ones that I didn't want to find again.  (Need proof, you can follow his shenanigans by looking for #brinkleywashere on Instagram or Facebook.)  

As I pulled my earplugs out and started getting out of the bed, I realized he was signing.  I stopped to listen for a moment.  The tiny little, speech-delayed, voice that can hardly utter a two-word phrase was signing.  The tears began to flow as I heard, "loved by you, who I am, who I am."  In his broken little speech pattern, he was perfectly in rhythm singing Good Good Father.  (You can find the lyrics below.)  

Both of my boys love this song and can belt it out with the artists as we listen in the car. This is not the first time that Brinkley has surprised me with this song.  A week or two ago we parked our car in the Target parking lot, BIG SHOCKER!  (This may have been the second or third trip of the week, I don't even keep track anymore.)  As I opened the door to take him out of his car seat he was singing the same lines, "loved by you, who I am, who I am."  I had to fight hard not to sob standing there in the parking lot.  All I could do was look at him and say, "yes you are and don't ever forget that" as I snuggled him close.  
At that moment, a familiar scripture hit me like a ton of bricks.  Psalm 119: 11 says, "I have hidden Your word in my heart that I might not sin against You."

It's hard as the parent of a young child with intellectual and developmental delays to know if they understand and process the things that you try to teach them.  Some things you can see obvious results, like walking or using utensils, but others aren't so easy.  It is hard to know if they grasp the concepts that you try to convey like love, friendship, kindness, etc.  It adds another layer of difficulty when speech is difficult for them.  They can't articulate back to you what they understood, or didn't.  

No matter the depth of his understanding of the words he loves to sing, one thing is certain, the concepts of Christ's love for him are finding their way into his heart.  There are a lot of things that I can't control in the environment that my children live in.  One thing that I have some control over is what they hear in my car.  These incidents, along with Brinkley singing the radio station jingle, prove to me that the things that they hear in my car (and we spend A LOT of time in the car) make an impact on them.  Putting truth before them constantly provides a way for my boys to hide The Word in their hearts, even when they don't know that's what they are doing.  

I remember sitting at a table in the hospital cafeteria one afternoon while Brinkley was still in the NICU.  My dear friend Mindy had brought her husband to meet us and have lunch with us.  Sean is also a pastor and the parent of a child with Down Syndrome.  At one point during the meal, Bryan asked Sean if he had been able to teach Sid about Christ and if Sid understand.  I don't remember exactly how Sean responded, but I think I know the answer.  Our God is a Good Good Father and he loves my son so much that He gave His son for him.  He loves my son so much that He has chosen him to come to this earth carrying an extra chromosome.  He has brought him through two open heart surgeries and may other medical complications that could have easily taken his life.  He made him exactly the way he wanted him.  Brinkley's genetic makeup isn't a flaw or an accident.  It is part of our Good Good Father's plan and I couldn't be more humbled or in awe of being a part of it.  

It is my prayer that despite what the world may throw at my boys that both of them will have the truth hidden in their hearts that they are loved by our Good Good Father and that is who they are!  

Good Good Father

Oh, I've heard a thousand stories
Of what they think You're like
But I've heard the tender whisper
Of love in the dead of night
And You tell me that You're pleased
And that I'm never alone

You're a good good Father
It's who You are, it's who You are, it's who You are
And I'm loved by You
It's who I am, it's who I am, it's who I am

Oh, and I've seen many searching
For answers far and wide
But I know we're all searching
For answers only You provide
‘Cause You know just what we need
Before we say a word

You're a good good Father
It's who You are, it's who You are, it's who You are
And I'm loved by You
It's who I am, it's who I am, it's who I am

Cause You are perfect in all of Your ways
You are perfect in all of Your ways
You are perfect in all of Your ways to us

You are perfect in all of Your ways
Oh, You are perfect in all of Your ways
You are perfect in all of Your ways to us

Oh, it's love so undeniable
I, I can hardly speak
Peace so unexplainable
I, I can hardly think
As You call me deeper still
As You call me deeper still
As You call me deeper still
Into love, love, love

You're a good good Father
It's who You are, it's who You are, it's who You are
And I'm loved by You
It's who I am, it's who I am, it's who I am

You're a good good Father
It's who You are, it's who You are, it's who You are
And I'm loved by You
It's who I am, it's who I am, it's who I am
You're a good good Father

Wednesday, February 3, 2016

And on the 8th day...

I'm sure you are all familiar with the Biblical account of creation.  In six days God created the Earth and on the seventh day He said that it was all good and He rested.  Brinkley decided to wait until the eighth day to rest.  Rest in the comfort of his own home that is.  Brinkley felt much better yesterday and played some.  He smiled several times and even laughed a few times.  Late in the afternoon, we consulted with the ICU team and pulmonology (and I consulted with a couple of great friends who are medical professionals on my on) and decided Brink was to the point that I could care for him from home.  He is still sick and most likely contagious and will not return to school or therapy until next week.  Currently, he is still requiring oxygen but we hope to be able to ween that over the coming days.  We will follow up with pulmonology on Friday morning.  You can see from the photos that he perked up a lot more yesterday.

He managed to convince the nurses to let him play with the thermometer.

One last chocolate pudding before we headed home.

More thermometer fun.

Praise Jesus, I'm going home!

Please continue to pray for him.  There are so many things to think about when treating a child who is medically complex.  I failed to think about all the therapy that he has missed for the last two weeks.  It never occurred to me that I should ask for therapy while he was admitted.  He laid in the bed for eight days, plus the two days he was home sick.  When I took him out of the bed to go home, he nearly hit the floor.  He poor little legs are like jello.  Being bedridden for a child with hypotonia is terrible.  I didn't realize just how terrible.  We've got a plan of exercises to try at home until we can go back to therapy next week.  Please pray that he hasn't regressed and that he will bounce back quickly and stronger than ever.

Monday, February 1, 2016

Day 7

Today makes the seventh day of our stay.  This is our longest stay in about two years.  We are hoping that it will be wrapping up soon.  Brinkley is starting to feel more like himself and actually ate some of his lunch today (chicken and fries).  His favorite part of lunch was the chocolate pudding.  He was not interested in dinner but did scarf down the vanilla pudding.    He played a little with some toys on his bed.  

He still needs oxygen support and is needing more help than usual at night.  His body temperature is staying in his normal range now.  We are attempting to put him back on his home settings for his CPAP machine tonight.  If he does well we will discuss a plan for working toward home.  Small steps are positive steps and we've made a few, so things are moving in the right direction.  

Please, please, please pay attention to your symptoms!  If you have a cold, stay home and take care of yourself.  This strain of RSV is AWFUL and could (and has) take the life of a person that is medically fragile.  In an otherwise healthy person, this virus simply looks like a bad cold.  This is not isolated to the upstate.  I heard today that the peds cardiac unit at MUSC is, and has been, full of terrible cases.  Many of our Instagram friends have told us that their children have been battling this also.  It's everywhere and is putting so many of our fragile kids in ICU.  

Sunday, January 31, 2016

Sunday Update

Yesterday afternoon Brinkley perked up a little and asked for a banana.  He also asked to watch Clubhouse (a.k.a. Mickey Mouse Clubhouse).  He sat up most of the afternoon and talked to me a little.  It was the first time in two or three days that he had eaten or talked to me.  Reese got to come visit for a little while last night and they were so excited to see each other!  Brinkley was hugging and kissing Reese.  (He's had no interest in anyone else since we've been here.)

This afternoon the doctor told us that this is the worst strain of RSV they have seen in several years.  It has been really rough on the babies and medically fragile kids.  He said that some kids have been here 2-3 weeks trying to get back to baseline.  I am certainly hoping that is not the case for us.  Tomorrow makes 7 days.  One thing that works in our favor is that we have a wonderful NP at the pulmonologist's office that insists that I keep some equipment at home (even though I have thought it wasn't necessary).  She's a pretty smart lady and that gives me the ability to take care of some things from home that would require other people to be admitted.  

It looks like at least a couple more days in the PICU and then we'll reevaluate.  

Brink has been eating a little today, all though, he hasn't been drinking.  He actually ate a few Joe Joe's (cookies) and asked to watch Baby Signing Time.  If you know my boy, you know this is a great sign that he is feeling more like himself.  Currently, he's wrestling with a box of crayons and coloring.  

Please continue to pray for him and specifically that his CPAP settings would be able to be adjusted back to home levels.  Pray for our family as it is tough to work out the logistics of having our family split between the hospital and home.  Finally, pray for the family that was in the room around the corner.  It appears that the child passed away yesterday afternoon.  I can't imagine their grief and it is obvious that the recent losses are weighing heavy on the staff.  

Saturday, January 30, 2016

Just a little update

Brinkley rested much better last night.  However, he had a hard time regulating his body temperature.  He stayed at 91 degrees most of the night.  This morning he has gotten up to 96 which is close to his normal of 97.5.  

I just spoke with the attending doctor in the PICU and he said that Brinkley's symptoms are consistent with the current strain of RSV that they are seeing.  ( I had no idea that there were different strains.)  He said that it has been really bad this year.  It appears that they have been treating numerous kids with RSV.  

We will continue to watch him and plan to move back to a regular room when his CPAP machine can be adjusted back to his home settings.  He is resting pretty well today and is back to a regular oxygen cannula for now.  His oxygen requirement is low at this point. He is grumpy, but moving in the right direction!

We tried a different respiratory therapy technique today.  Brinkley wore what our buddy Grayson calls the shaky vest.  It's a belt that goes around the chest, inflates, and then vibrates to break up congestion.  It's a little scary at first, but he did great.  He sat in my lap while using it and it felt like we were sitting on the running washing machine.  Here's a peak: 

Friday, January 29, 2016

There's a first time for everything

As many of you know, Brinkley was born 6 weeks early.  On top of that, he has a heart defect and Down Syndrome.  All of those things can contribute to respiratory issues for children.  Not to mention the fact that I am asthmatic and struggle with chronic respiratory issues and that may give him more of a tendency as well.  Because of all of this, he qualified for the RSV vaccine for two years.  Boy am I glad that he did!  

Sunday he wasn't feeling well and through the night he started running a temperature of 104. He continued to run 103+ fevers all day Monday.  Tuesday morning we saw the pediatrician who admitted us to the hospital.  After a chest x-ray and lab work, we learned that he had RSV.  This is the first time he has had RSV.  This is awful!  I am so glad that he didn't get this as a baby.  I honestly don't know that he could have dealt with it as fragile as he was.

Last night was rough!  HIs oxygen levels decreased drastically and by this morning, he was running a fever of 105. We have had lots of commotion in our room this morning with the residents, nurses, and our pulmonologist coming in and out to check on him.  They want to move him to ICU, but there are no beds available, so we are on the list to go if a room becomes available.  In the meantime, he is wearing his cpap with a new mask.  It looks like a hazmat mask!  With several meds the fever has broken and he is resting.  

We covet your prayers as he is miserable!  

Hazmat Brinkley

Wednesday, January 20, 2016

Appreciate the Wait

Today was the day.  The rite of passage for all females who have made it to the magic age of adulthood... the yearly exam with the Gynecologist.  It is not the most pleasant of experiences and waiting in the office doesn't make the experience any better.  I arrived 30 minutes early, so I knew I'd be waiting a while.  

As my appointment time inched closer the lady at the desk told me that it should only be a few more minutes.  My appointment time came and went and I was still in the waiting room.  After I'd been there about 45 minutes I was called back to start the process.  You know the drill: specimen, finger-stick, blood pressure, the dreaded scale, and the questionnaire about your life and meds.  By the time I got to a room it was 30 minutes past my appointment time.  It's never pleasant to wait, and waiting in a cold exam room (watching the snow fall through the window) in minimal coverings doesn't add to the experience.  My immediate thoughts were of irritation and then I remembered.  

I remembered the day several years ago when I came into that office for an ultrasound for the very first time.  After the initial scans the tech told us that she needed to step out to bring the doctor in.  My doctor wasn't available so one of her partners came in to explain to us that our baby had no heartbeat.  I had never laid eyes on this woman before, but there was genuine concern and compassion in the way that she handled this tough situation.  She sat in that room and cried with me and listened to me spill my heart.  She never rushed me and made me feel like this was the most important thing she would deal with all day.  I had no doubt that from that point on she was my new doctor.

Dr. Katherine Frederick is one of a kind.  She rearranged her schedule to do the D & C following my miscarriage.  She was incredibly encouraging through the process of trying again.  The second time around she followed me very closely to ease my fears.  When we had the abnormal ultrasound with Brinkley she took so much extra time with us.  She personally called me to talk about my lab work and spent close to an hour on the phone with Bryan and I.  Never once did she ever make me feel like my baby was anything less than perfect despite his diagnosis.  Over and over again she has gone above and beyond for me.  

With that in mind, I thought about the young mom who may be in the room next door getting a tough diagnosis.  I thought about the lady who may be scared to death about an unplanned pregnancy.  I thought about the lady that they were working in because something unexpected happened to her.  I thought about the young girl that may be there for the first time scared to death of what the OBGYN's office is all about. I thought about the day I was rushed out of the office to be admitted for my emergency c-section. 

I thought about how each and every appointment that I have had with Dr. Fredrick has been one that I've walked away from knowing that she cared and gave me the best care that she could.  Knowing that she was giving those patients she same great care that she always gives me made me wrap my exam gown a little tighter and settle in to wait patiently (and thankfully) for my turn.  

Thursday, January 7, 2016

From the Cutting Room Floor: BOTS Part 2

Here's a few more Brinkley on the Shelf extras...

From the cutting room floor: Brinkley on the shelf

If you couldn't get enough of Brinkley on the shelf here's a few extras to enjoy.