Wednesday, November 15, 2017

Kennedy is 4!

It goes without saying that children grow up in the blink of an eye.  If it wasn't true, Kenny Chesney wouldn't have a hit song discussing the a topic.  However, when you're the parent of a child with special needs, you get to savor some of the "baby" moments a little longer.  Sure the numbers go up the same, but sometimes that's all.

Due to the circumstances surrounding Kennedy's birth, she started life behind the 8 ball, so to speak.  It was bitter sweet for me, because I loved seeing her fight so early in life and I got to have a baby for a little while longer.  However, it was frustrating and very hard to watch when she'd take a "step" forward only to take two steps back in the NICU.  I'll never the Christmas night of 2013.  Jonathon was holding Kennedy and had just finished giving her a bottle.  Kennedy's oxygen level started to drop and instead of giving her a second to correct it on her own a nurse, who wasn't familiar with Kennedy and wasn't assigned to her, stepped over and began to "stimulate" her to bring her out of the episode.  We were 3-4 days away from going home.  Thanks to that nurse, it was now 8 or more.  I remember being so angry, because, at that moment, I blamed that nurse for keeping us there that much longer.  Fast forward to the next day, Kennedy was being fitted for a car bed.  Her nurse was feeding her and she began to have another episode.  This time the nurse gave her a chance to come out of it and she didn't.  Then the nurse started to stimulate her and she still wasn't coming out of it.  I felt so helpless watching my child turn blue and not being able to do a darn thing about it.  She finally came out of it, but had she kept going the nurse was about to pull the "Code Blue" lever next to her bed.  At that moment I had such a conflict of emotions.  I feel like God was telling me it wasn't right to be mad at that nurse, because Kennedy truly wasn't ready to come home yet.  I remember being such a ball of emotions and crying on the shoulder of a nurse who had been with Kennedy since she was born.  Obviously, Kennedy eventually came home, but the first year of her life wasn't exactly the same as Savannah's first year of life.

I don't like comparing my kids, because they are two completely different people.  They are literally like day and night.  However, to make my point, I'm going to compare them.  You see, Kennedy came home at almost 2 months old, in newborn clothes.  She wasn't growing out of clothes every few weeks like Savannah did.  There were clothing sizes she never even wore because she grew so quickly.  Savannah was rolling over at 5 months old, she was crawling not long after that, and walking before she was a year old.  Kennedy didn't even army crawl until she was 9 months old.  She was over a year old before she started to crawl.  She didn't walk until she was almost 2.  She stayed in 18 month clothing from 2-3 years old.  Thus to say, it was nice having a child who stayed a baby a little longer than most kiddos do.  It was also a perk to get some use out of the clothes that Savannah wore one or two times.

This year though, I feel like she completely skipped over the "toddler phase" and went straight into little girl mode.  Two years ago, she'd just started using a K-walker to move around.  In January of this year she started using forearm crutches part time.  The end of April/beginning of March she was given the all clear to use her crutches full-time.  Now she's walking with 1 crutch most of the time, but usually can walk a considerable amount unassisted.  Two and a half years ago, she could barely put 2 words together.  We'd started developmental therapy because she wasn't talking and didn't take to sign language very well.  After she had her shunt placed, her speech took off like a rocket.  Last year she was tested for speech to qualify for therapy through the school corporation.  The Speech Therapist said she didn't need speech anymore because her vocabulary was age appropriate.

All of this to say, I've finally lost my baby, but I will savor every "baby" minute I got with her.  I will never stand in her way (she'd probably beat me with her crutch if I did) and I will only stand here in awe of the little ball of fire and sunshine that she has become.  I know I always say, I can't wait to see what she does next.  Truly I can't, because she has surpassed every obstacle I worried about and prayed over, after her diagnosis.  As Mom's we try to imagine what our child will be like, while they are still nestled inside our bellies.  Two times I imagined and two times my mind has been blown away.

Happy 4th birthday, Miss K.  I can't wait to see all the magical things you accomplish in your new year!

Sunday, July 30, 2017

Lupron tried to kill me.....literally!

In December of 2016 I began having serious pains in my side.  I called my PCP who told me to go to the ER.  A family friend brought their kids to our house to watch Savannah and Kennedy while he took me to the ER.  Jonathon was out of town, but was heading to Evansville.  At the ER it was discovered that I had a cyst on my right ovary.  The ER Doctor told me to follow up with my OB-GYN within the next two weeks.  Unfortunately, the next two weeks consisted of Christmas and New Year’s Eve celebrations.  January 11th, I was able to follow-up with my OB-GYN.  Another ultrasound confirmed the cyst was still there.  Something I already knew because I was still having pain from time to time.  The OB said since the cyst hadn’t resolved itself she would like to remove it surgically.  January 18th I had surgery to remove the cyst.  Before the surgery I had asked the OB to also remove my mirena IUD and tie my tubes.  After the surgery we learned that the source of my pain had not been the cyst, but scar tissue adhesions had become attached from my uterus to my upper abdominal wall.  The cyst which was said to be around the size of a golf ball based on imaging was really only the size of a pea.  My OB also noticed I had a very mild case of endometriosis.  She thought the hormones from the mirena had kept it from spreading. 

The first week after surgery was brutal.  I could barely move, but I tried to do some things because I have a hard time letting people help me out.  My Mother-In-Law graciously came to stay for two weeks to help get the girls to school and help around the house.  Our church was also very gracious and provided meals for us during the two-week span as well.  At my post-op follow up I told the Nurse Practitioner that I was still experiencing pain.  She said it was to be expected because “there was a lot going on in there” when I had surgery.  I waited it out, taking a heating pad to work.  I took 800MG Ibuprofen around the clock to relieve the pain, substituting the oxycodone at night.  

Eventually I got to where I could function, but I was still having pain.  It wasn’t nearly as bad as it had been before the surgery, but it was definitely noticeable.  Towards the end of February I called my OB to express my concerns with the pain I was still having.  A week or so after phoning her I began to get calls from our prescription insurance asking for authorization to send an injection to my OB’s office.  The insurance company wanted to check with me before sending it because of the high copay.  I called the OB’s office and was informed by a nurse that the OB thought it was probably the endometriosis causing my pain and she had prescribed Lupron injections.  The nurse explained that these injections would basically send my body into menopause in an attempt to stop the endometriosis from spreading.  In addition to the injection, I’d also be taking an oral medication (add-back therapy) to offset the side effects associated with the hormones.  The Lupron injections come in 2 forms.  A woman can either have an injection every month or every 3 months.  My OB prescribed the quarterly injection.  I asked the nurse if there were any other options.  Having had a horrible experience with a normal dose birth control in college, I knew my body was very sensitive to hormones.  She explained that I had two options, the Lupron injections or a hysterectomy.  I could hardly believe that my insurance would pay for a hysterectomy after having only been diagnosed with endometriosis a little over a month prior, however the nurse assured me my medical records were enough to prove that I needed the surgery, should I elect to have it.  I told the nurse I’d talk to my husband and let her know how we’d proceed.  She also informed me that if we went with the injections she had a medical savings card which would bring down the copay for the shot considerably.

After talking with Jonathon, he was nervous about me going back in for surgery so soon after the previous surgery.  I also reached out to a couple friends whom I know who have endometriosis and asked if they'd had any experience with the injections.  Both had, but one couldn't remember anything about them since it'd been so long since she was on them; and the other friend had a decent experience with them, but she was on the monthly injections, not the quarterly ones.  I explained my concerns with the hormones, but Jonathon thought it would be best to at least try the injections.  I agreed to try them, hoping to at least bide some time before I needed to face the ultimate fate of a hysterectomy.

In the middle of March, I had my first injection.  Within a few days, my mood changed considerably.   I began to lose motivation to do anything.  I functioned to the limit that was expected of me.  Co-workers would ask me what was wrong and I couldn’t tell them.  I’d be on the verge of tears and not have a clue why I was about to cry.  I began thinking that everyone I was around secretly hated me and was only nice to me because they had to be around me for one reason or another.  I started to think that I had no real purpose to my life.  At times I would even contemplate ending my life.  The week of spring break things really took a turn for the worst.  I noticed I’d began developing some of same symptoms I’d had when I was diagnosed with post-partum depression after I had Kennedy.  Concerned I called my OB and asked if they’d be able to put me back on Zoloft.  My OB was out of town, but her associate was concerned so she had me come in for an evaluation.  At the end of our visit she agreed to send in a prescription for Zoloft.  She also was concerned about my mental state and wanted me to follow up with a Nurse Practitioner on the same floor who could evaluate me and recommend a therapist.  Before I left she told me that these problems were because the add-back therapy hadn’t built up in my system.  Once it had, a lot of these issues would subside.  She gave me to referrals before I left.

After the first referral deemed impossible to follow, I called the second referral and was able to be seen. The Nurse Practitioner said that I needed to see a therapist and thought she had someone in mind.  The specific person in mind also saw children, so it would leave a door open if Savannah or Kennedy ever needed to seek counseling.  Concerned with my anxiety and lack of motivation to function from day to day, she called in a prescription for Wellbutrin. I’d also began to dig more into the Bible and even began to listen to K-Love.  There were a lot of songs that came on that either gave me hope or described exactly how I was feeling.  Between the medications and my faith through music and scripture really helped bring me out of the darkness.

Towards the end of May I began having pain in my pelvic area again.  I had my annual visit with my OB so I asked her if it was common to experience pain right before another injection was due.  She said that was probably the cause of my pain and it should subside after getting my next injection. To get me through until the next injection, she wrote me a prescription for more 800MG Ibuprofen.

The beginning of June we went to Colorado for a family vacation.  I was still in quite a bit of pain, but I just worked through it to have a good time with my family.  The week after we came home I had my second injection.  I asked the nurses if I’d have the same side effects as I’d had with the first, even though the Zoloft, Wellbutrin, and add-back therapy had now built up in my system.  They told me that I would indeed have the same symptoms come back.  They also said this would be my last injection, as women are not supposed to have them more than 6 months at a time.  Concerned about this, I asked the nurse who had been working with me to get the injections ordered.  She said the other nurses were correct, but she was willing to ask the OB if she’d be open to a third injection.

Bracing myself for the emotional and mental instability to come back, I kept telling myself that I’d been through it before but this time I knew what it was and what was causing it.  However, the physical pain never subsided.  It was actually getting worse.  I thought I rode the wave through the first few weeks of the emotions pretty well.  Although I had upcoming VBS to focus on.  However, even the week before VBS and even during VBS week I was coming home in so much pain that I was going back to the oxycodone left over from my surgery in January and taking it with the ibuprofen (this was a trick told to me by a nurse after my C-Section) because the ibuprofen alone was no longer helping the pain.

The week after VBS our family went on vacation with Jonathon’s family.  It’s a tradition we’ve done almost every summer.  I was still dealing with a lot of physical pain.  It was not helping my mental state at all.  Almost every day I having to take an oxycodone and ibuprofen to manage the pain.  However, I began noticing during that week that this was beginning to do nothing but take the edge off of the pain.  Every day at some point during the day I would find myself curled up in a ball on our bed crying.  At one point we realized Kennedy doesn’t have feeling in parts of her feet.  This may seem trivial to some, but to me it was devastating.  I know it’s not a true set back by any means, but to me it was one more thing to grieve for her.  There were also things that triggered insecurities which became amplified and manifested in my mind.  I began feeling like I was a worthless, horrible parent, who wasn’t doing the best by my kids.  I felt like I wasn’t good enough for my husband.  I began feeling like I needed to remove myself from the situation to give someone else a chance to be better for my kids and husband than I was.

On Wednesday night of that week, we headed to Nashville so Jonathon could join some friends for a trip down to the Gulf Shores.  On the way to Nashville things kept playing over in my head, my emotions got out of control, and I felt hopeless.  I remember at one point when coming into Nashville, I began running my thumbnail on my left hand up and down my right wrist, trying to break the skin.  I couldn’t tell my husband because he deserved this trip.  His job had been so stressful for so long, I knew he needed time away from everything and everyone to just decompress. 

Through the course of that weekend my depression only went into a deeper, darker state. I'd started googling the medications I was on and how much it would take for each of those to end my life.  Fortunately, (I thought unfortunately at the time) none of the medication I was on would produce a fatal reaction if overdosed.   I began physically doing things to myself that I'd never done before.  I tried keeping all of this from my kids, but they eventually started seeing the marks.  I was trying to figure out a way of having someone find them so they wouldn't be in the house by themselves for the weekend, when I finally died.  

Eventually, by the grace of God, I had reached out to someone who was genuinely concerned about my mental state.  She began reaching out to other people and eventually I was able to get some help locally from friends.  These friends single saved my life that weekend, and ultimately prevented the lives of my children and husband from ultimately being shattered.  My Husband, who learned of this situation while he was on his trip, was overwhelmed by what I'd kept from him and his inability to do anything about it.

I went to pick him up from his trip, and we had a long talk on the way home.  He didn't realize exactly what the injections were and had remembered the issue with the birth control from college.  He flat out said there would be no more injections.

The next Monday, I called my OB and the Nurse Practitioner.  My OB's office doubled my dosage of Zoloft.  My Nurse Practitioner was on vacation, but alarmed by the situation from the weekend, her staff relayed what was going on and she called me from vacation.  She was worried that the physical pain was partially to blame for my mental state.  She had her office prescribe me Xanax to see if it would help my body relax, and ultimately put an end to some of the pain.  

In the weeks since this dark time, I have still battled with my depression and the physical pain.  Some days are better than others.  I truly don't think the endometriosis is causing the pain.  I've done a lot of research about my pain and it's not common with endometriosis.  On the endometriosis website it says that endometriosis basically creates the perfect breeding ground for adhesions.  Even though I have no medical proof, I'm fairly certain my adhesions have come back with a vengeance.  Finding this information really gave me relief.  I know many people who have battled endometriosis a lot longer than I have, yet they were able to manage it for a lot longer than 6 months.  I felt like I was crazy because I was in so much pain, but reluctant to think the endometriosis was the cause, due to the short amount of time I'd been diagnosed.

Thankfully, I'll be having my partial hysterectomy in the middle of August.  I'm hopeful that this will not only end the physical pain, but also put an end to some of the mental anguish I've been battling.  Thankfully I have some wonderful doctors who will be helping me through all of this.

I want to finish this post to say, I hope this can help someone somewhere know the true dangers of Lupron.  A friend who helped me out that crazy weekend told me later that she'd researched Lupron and asked one of her friends about it.  She said she found nothing good about it in her research and her friend didn't have a positive experience with it either.  I have to believe something good will come out of my experience, even if it's only to warn other women of the potential risks of Lupron injections.

Monday, July 11, 2016

7 years of Marriage

July 11th is a day that has collected meaning over the last 11 years for Jonathon and I.  July 11, 2005, Jonathon started his career with CSX.  Unbeknownst to us at the time we picked our wedding date, but July 11, 1931, my Great Grandparents, Ike and Emma Roberts were married.  July 11, 2009, Jonathon and I were married.

When I was growing up, every summer my Great Grandparents, Grandma and Pop Pop Roberts, would always come out to Colorado from Florida for a month. Looking back, I realize how blessed I was to not only get to know them, but to have their example set before me.  They were that cute old couple who were still holding hands and still had the light and adoration in their eyes for each other.  There's a picture somewhere of them standing in their double wide holding hands and their eyes are just twinkling and out pouring with love.  You can tell after all the years they'd been married, they were just as in love with each other that day as they were the day they married.  I remember when Pop Pop Roberts died, January 31, 1999.  I wasn't there for the services in Florida or New Jersey, but my Grandma would tell the story of her mothers reaction to seeing Pop Pop Roberts in the casket in Florida and then his urn in New Jersey.  Grandma Roberts stared him down in both instances.  She had anger in her eyes, because she always thought she'd pass away first.  Grandma Roberts had macular degeneration in her eyes and she'd began to show signs of Alzheimers.  She'd always prepared herself to go before him.  Now here she was without the man whom she served as a help meet for over 3/4 of her life.  In the 2 years between their deaths, Grandma Roberts would always talk about Pop Pop as if he were still alive.  She told my Grandma many times that she'd talked with "Daddy" as she called him.  As a matter of fact, I truly believe in my heart of hearts that Pop Pop Roberts came down and took her home that February day in 2001.  I've always said I wanted a love and marriage just like Grandma and Pop Pop Roberts.  The only problem was, I had absolutely no idea how to achieve such a thing.

Over the last 7 years, there have been many lessons, blessings, and hardships.  Every year on this date I'd write out this perfect declaration of love and affection towards Jonathon.  Highlighting all of the changes our relationship has faced and yet we still made it through.  A few months ago, a friend and fellow blogger posted something that really stuck with me.  It was her wedding anniversary and instead of posting a similar declaration on her facebook page, she chose to write a blog post that was real.  The true struggles of marriage.  This post is somewhat inspired by her post.

A little over a month ago, I was talking with another friend and fellow blogger on the phone.  The purpose of the call quickly changed from business to personal.  I shared some struggles I was having both professionally and personally.  This dear sweet friend gave me advice that has changed my life.  She encouraged me to read "Created to Be His Help Meet" by Debi Pearl.  The book has not only helped me put God's purpose for marriage into perfect perspective for me, but it's also completely transformed my marriage.  There were a couple chapters that were hard to swallow. Some I took completely out of context.  I had to do some research and I had to pray.  God put it before me in a way that I understood not only what the book was saying, but why I read it in the context I did.  If you are a wife seeking direction, I highly reccomend this book.  I was a wife looking for a Christ Centered marriage, but not quite sure how to achieve it.

Since I began reading this book, I have been amazed by the transformation my marriage has taken.  Before I began reading this book, I'll admit I was skeptical about the impact it could have on my marriage.  How could I alone make my marriage better? Isn't a marriage 50/50?  Since reading this book, I've realized that no, I can not change my husband.  He is the way God made him and that is that.  However, I can change my response.  I have control over myself, my thoughts, my actions, and my words.  There used to be many times when Jonathon would make a comment that I took offense to.  My reaction to said offense was to ignore him or say something equally offensive.  Now if he says something I take offense to, I ask myself "Am I taking this the way he meant it?"  "Is being offfended going to have a positive or negative impact on my marriage?"  "Is this something I'm going to remember tomorrow, if for some reason, God forbid, he not live to see another day?"  One of the Bible passages we had read during our wedding ceremony was 1 Corrinthians 13:4-7.  It's one of the most popular and most recognizable passages in the Bible.  "Love is patient, love is kind; it is not jealous or conceited or proud; love is not ill-mannered or selfish or irritable; love does not keep a record of wrongs; love is not happy with evil, but happy with the truth.  Love never gives up; and its faith, hope, and patience never fail." Re-reading this passage was such an eye opener for me.  How many times was I selfish, irritable, keeping a track record of wrongs, allowed pride to steal my joy?  Love is not a feeling, love is a choice.  I choose to love my husband and accept him, faults and all, with grace and understanding.  I choose to not let my emotions control my thoughts and my actions.  Those are things I can control.

I will be forever grateful for the people God has placed on my path.  Especially the one He made for me.  If I can continue to be half the help meet Grandma Roberts was, I can only hope that one day there will be a picture of Jonathon and I after 60 something years of marriage.  I pray the light in our eyes never burns out.  I pray our hands hold firm together as we walk this life side by side.  I pray that I never forget all that I have learned and continue to learn about how to be the best help meet I can be to my husband.


Saturday, June 4, 2016

Letter to Shiloh in 2013

Dear Shiloh,
In 2 short months your world will be completely turned upside down.  You may not know it now, but that sweet little girl inside your belly has a hole in the bottom of her back.  Don't worry, she's going to be fine and you will make it through the other side a much stronger person.  You're going to be given the option to have a surgery while that sweet girl is still in your belly.  Take it!  You're going to be given a lot of paperwork and a book that explains what Spina Bifida is and all that comes with the diagnosis. Throw it all away!  None of that literature is going to matter when you see that sweet little girl for the first time.  You're not going to thumb through the pages when she bears weight for the first time.  No amount of literature is going to prepare you for that first time she needs a surgery when she's not even 2.  Nothing in those pages will comfort you when you are faced with the reality of her finally needing a shunt.  The time will come, just know it's going to be alright.  Lean on those who have been in your shoes.  They will be your greatest resource of knowledge and support, when no one else truly understands what you and that little girl are going through.

When you decide to do the surgery, know that you're doing what's best for your unborn child.  I know this is harder said than done, but please don't feel like you're having to choose between your children.  Savannah won't even remember being away from you for those 3 1/2 months.  She'll visit and you'll cry when she goes.  Remember this is only temporary and you'll have the rest of forever to spend with her.  When your water finally breaks, don't beat yourself up.  The longer I've lived with what happened, the more I realize God ultimately does things on purpose.  He's got everything mapped out and you are playing your part fearfully and beautifully.

Don't get in such a hurry to get her out of the hospital, that you forget that little girl needs every minute of her time there.  Those nurses know and love her so much.  They will do everything in their power to make sure she leaves when she's ready and not a moment sooner.  Nothing about this is permanent.  Remember, God's timing, not ours.

When they finally do allow her to go home, don't rush her off of the oxygen.  God is going to work some crazy miracles in that first year home.  Don't spoil it by trying to set your own agenda.  When they talk about the shunt, remember, God's got this.  She needs the oxygen until the Doctor says she doesn't!

Just remember to enjoy every minute, no matter the situation.  God has never let you down and He's not going to start.  It might seem silly now, but that little girl is going to teach you so much more about life than you have ever learned before.  Let her do her thing on her terms.  Don't try to hold her back because you're afraid she's going to fall.  Let her try to dance and pray she flies.

Monday, May 16, 2016

Transformation Tuesday

A week and 1 year ago today, I received my final wake up call.  Pictures from Mother's Day were posted on Facebook and I could no longer deny that I needed to do something about my weight.  My clothes were no longer fitting.  I'd actually just gone shopping for clothes for our cruise and it was so unpleasant.  I cried because clothes weren't fitting like they should unless I went up to the next size.  Even then I hated what I saw in the mirror.  I'm so thankful I had someone to help me out of my hole.  Not only has she helped me completely transform on the outside, she's also loved me where I'm at and given me some direction to grow as a person.

On June 6th, it will be 1 year since I started my first 24-day challenge.  During those 24 days, I lost 12 pounds and 13 1/2 inches.  10 of those pounds alone were toxins that processed foods left in my intestines.  Since that first challenge, I've used clean eating as a guide post and continued to use Advocare products.  Every 90 days I complete a 10 day cleanse, just to keep the toxins at bay when I do indulge on cheat meals.  I've gone on to lose 25 pounds and dropped 3 pant sizes.  Was it hard?  Yes!  Did I fall off the wagon several times?  Of course!  Did I always find my way back and move forward?  Absolutely!  Bottom line, anything worth having is going to be hard. There will be struggles, but it's the struggles that make a person, not the rewards. 

I honestly don't know why I overcomplicated losing weight before I found Advocare.  Honestly, starving myself was my primary way of weight management before Advocare.  I saw food as an enemy, not fuel for my body to perform as it should.  Now, I've learned what to look for on food labels.  I don't trust any supplemental products that aren't 3rd party tested for ingredient verification.  

Now that I've been able to pull myself apart and regroup as a stronger, healthier person, I'm excited to have helped other people over the course of the last year.  It's the world's best job to provide hope to someone who had once given up on hope.

Monday, March 28, 2016

What the World Needs Now Is Grace!

Why are we so offendable?  Why are we so quick to excuse our own shortcomings, but condemn the shortcomings of others?  As a rule, almost everyone has a touch of narcissism within them.  Why wouldn't we though?  We are taught to look out for number one, all others be damned.  That's what society teaches us, but what about God?  I ask these questions for myself as much as anyone else.  Like the rest of the world, I struggle the "all about me" mentality.  However, I'm starting to realize that changing my attitude and giving a little grace is worth far more than self satisfaction or having the last word.

The first time I heard the phrase "What the world needs now is grace", I didn't know what that meant.  I was 18 and thought grace was just something you said before dinner.  16 years later, I've started to realize grace is a wonderful gift God gives us every day.  It's also a wonderful gift He gives us so we may pass it on to others.

In times when I've been hurt or offended, the only times I've not later regretted my reaction was when I showed grace and responded with love and understanding instead of anger.  Responding with grace not only prevented feelings of guilt, but it also provided peace in my heart.  There's a saying I often have to tell myself when I am angry and want to react to my anger.  You attract more bees with honey than you do with vinegar.  We can't control how others treat us.  There's always going to be people who hurt our feelings, either intentionally or unintentionally.  What we can control is our reaction to the offense.  Think of anger as fuel and grace as an extinguisher.  Responding in anger will often fuel the fire.  Responding in grace not only extinguishes the fire, but it also gives you peace about how you responded to the fire.

One of my favorite songs is "Man in the Mirror" by Michael Jackson.  The song basically talks about the problems in the world, yet acknowledges that the only way to change those problems is to start with the person in the mirror.  Think of how many lives would be changed if we started showing grace and compassion to one another, instead of bitterness and hatred.  How many lives could be changed, our own included, if we passed along the same grace and mercy He gives us?

Again, I'm not saying I'm perfect.  I struggle with extending grace as much as the next person.  The goal of this post is to share some wisdom I have found helpful, in hopes it might help someone else.  A couple weeks ago, I had 2 friends post this image on facebook.  Hopefully you will find it helpful too.

Tuesday, March 15, 2016

1st Clinic of The Year

Yesterday Kennedy and I were up in Cincinnati again.  We started the day off with a renal ultrasound, followed by a VCUG and Spina Bifida Clinic.  The main purpose of the VCUG was to see if Kennedy's bladder is refluxing urine into her kidney's when her bladder is full.

This was our first clinic since Kennedy's cord dethering/cyst removal and shunt surgeries.  One of the highlights was getting to see our Fetal Care Center Case Worker, Erin.  She was shadowing our Social Worker for the afternoon.  This was the first time she'd seen Kennedy with her walker.  I know I've said this before, but every single person who helped us through the decision to have fetal surgery will forever have a special place in our hearts.

The urodynamics test from 2 weeks ago and the VCUG showed that Kennedy is still not completely voiding her bladder on her own.  The Urologist did say that her bladder does look much better than it did during the renal ultrasound in August and she's not refluxing into her kidneys.  However, we will continue to cath her during the day and she will remain on the medication that keeps her bladder from having uncontrollable spasms.  The VCUG also showed a lot of back up in Kennedy's bowels.  She's being placed on an additional medication to help clear her bowel tract and prevent constipation.

The biggest concern of the day was how much Kennedy is drinking during the day.  Her catheter outputs are lower than the Urologist would like them to be.  We've added "cup holder" baskets to Kennedy's walker.  Our plan is to keep a cup of water in a cup holder at all times and offer her milk with her meals and snacks.  The doctors also feel this will help relieve some of Kennedy's bowel issues as well.

The Physical Therapist Doctor ordered another Manual Muscle Test now that we are so far out from surgery.  This will allow them to see what function has improved since her surgeries and provide a baseline, should something go array in the future.  She was very impressed with how well Kennedy uses her walker.  Poor Kennedy thought she was getting to leave when they lured her into the hallway to watch her walk, only to make her come back into the exam room.

We discussed preschool transition with the Developmental Department.  My head is spinning because I have no clue where all of this time went.  I'd always assumed Kennedy would be going to preschool later because of where her birthday fell.  Unfortunately, the Early Intervention Program we receive her therapy services through ends the day she turns 3.  We are so thankful that our local school district has multiple preschools for children with special needs.  Tomorrow we meet with our Early Intervention Coordinator for our quarterly meeting.  We will be scheduling meetings with the school system to begin this process.  It's also bittersweet because we will be losing our two therapists who have been nothing short of amazing.  They both deserve so much credit for guiding and pushing Kennedy to do the things she's doing right now.

On a personal note, while in clinic I received texts and calls from family that my Great-Aunt Ike (pronounced I-key) passed away yesterday morning unexpectedly of a heart attack.  I don't have a lot of memories of Aunt Ike, but I will never forget the last time I saw her.  She was such a special person to so many people.  Anyone who knew her will surely never forget her.