Monday, September 3, 2018

Seasons of the year come and go, as do the seasons of life.  The seasons of life differ, in that they sometimes stick around longer than we want them, or all to quickly they disappear.  Seasons of the year have set “boundaries”, we know that a harsh winter will only last about 90 days and spring will arrive and stick around for about 90 days before summer arrives.   Have you ever found yourself in a season that is suddenly “gone” and you weren’t ready for it to be over?  I have….

During our summer vacation in Florida our 4th grandchild was born.  This was great news, except we were in Florida, and our newest little person was in North Carolina.  Our little Isabella (my Izzy B) was already 10 days old before my arms held her, before I placed a kiss on her forehead, before she totally captured my heart,  and I whispered “I love you”.   Oh the joy of a new little one to love.  

Over the course of the next couple of weeks I spent as much time as I could with my baby girls.  Oddly I found myself leaving each time with a heaviness that weighed on my spirit.  At one point I found myself crying as I walked around the lake after leaving Nicole’s house.  I couldn’t figure out what it was.  As I began trying to process what these feelings were all about, I realized that I felt like I was betraying Pyper.  How is it even possible to betray a one year old?  I couldn’t wrap my thoughts around the word “betrayal”, but I also didn’t understand the struggle I was experiencing.  I was walking at the lake one afternoon when God gave me my “ah – ha” moment.  He whispered the word “Season”.  I chewed on that word as I walked and as quickly as God whispered the word “season”, He said “they change”.  SEASONS CHANGE.

It didn’t take me long to process what I had been feeling into the realization that I was mourning the loss of a season in my life.  A season that held a very special place in my life, a season that I WASN’T ready to give up.   The “season” was my one-on-one day each week that I referred to as my “Nana and Pyper” day.  Each week it was just Pyper and I.  I didn’t have to share my time or attention with anyone.  For a few short hours, one day a week, ALL my affections were centered on JoJo.  And suddenly this season in my life was gone.  Now I understood why I felt like I was betraying Pyper.  What I used to be able to give to her, I no longer can, at least not to the extent that I used to be able to. 

My season with Pyper has changed.  I will miss it, I AM missing it.  A new season has begun and it includes Izzy B.  She now joins JoJo and I and my once a week, one-on-one, has become my one-on-two day, my “Nana and her girls” day.  The seasons of our lives change and my new season has expanded my heart so that I can fully love on Izzy B too.  What is so lovely about the change of seasons is that they are fully orchestrated by God.  I have entered a new season and I am so thankful for it.  I know that I can trust in the One who changes the seasons.

Today I am THANKFUL that God has placed me in a new “season” of life.

Today I am THANKFUL that my arms now hold two babies.

Today I am THANKFUL for “my girls”. What a blessing it is to be a big part of their world.

Today I am THANKFUL that Pyper has a little sister that will grow up to be one of her protectors.

Today I am THANKFUL that Pyper is so CLOSE to sitting up on her own.

Saturday, June 30, 2018

This post is not just an entry, it is indeed a short story.  Settle in for the next few minutes and pretend that you are sitting on the couch with Pyper in your lap.  I hope that by the time you are finished reading you will have a small sense of who this incredible little girl is.

Pyper Jo’s 1st birthday.  What an incredible journey our family has encountered and endured this past year.  It has tossed stuff at us that no family ever wants to experience.  It certainly has been an unintended journey.  Today’s entry is tough to write.  For the past couple of months I have been preparing for this special entry by jotting down my thoughts and reflections surrounding Pyper’s first year of life.  I hope that within these words you will feel the intensity of the emotions that are hidden within them.

Here we go…

I have stood in front of toy isles these past couple of weeks desperately wanting to pick out cute and fun toys for Pyper’s 1st birthday.  With each trip I would find myself hopeful and excited as I walked the isle.  It didn’t take long and the excitement that I felt would disappear.  In it’s place there was a sense of sadness that invaded my spirit as the realization of all that is “different” settled over me.  Each time was the same (Kmart, Target, Walmart).  I went expectantly only to experience the all familiar realization that Pyper is not the normal one year old.  Times like this remind me ever so harshly that Pyper is different.  It reminds me of all that has been taken from us.

In most aspects of life Pyper is still a baby.  At a year old Pyper can’t roll over.  She can’t sit up by herself (although she is SO close).  She doesn’t reach for toys, therefore she doesn’t play with toys.  She doesn’t crawl and walking isn’t yet on the radar for her.  She spends her day sitting in her big red chair, lying on her activity mat, standing/sitting in her rainforest activity center or sitting on your lap (this is definitely her happy place!!).  The normal progression of baby milestones isn’t Pyper’s normal.  She is an uncharted, new experience for us.  She presents the unknown.  When will she be able to play with toys?  When will she crawl, walk, talk?  What will her mental capacity be?  Will she start kindergarten when she is 5?  The questions are endless and the answers are a complete unknown.

These unknown’s, are the thoughts that tug at my heart strings the most and challenge me to look beyond the present to the future. BUT I WANT TO KNOW NOW. I am a planner, a list maker.  I want to know so that I know what to expect, how to plan and be prepared.  For this season of Pyper’s life, I am learning to be accepting of the unanswered questions and relentless “what ifs” that fill my thoughts.

Let me catch you up on the happenings in Pyper’s world:

  • She sprouted 2 teeth a couple of weeks ago.  A milestone that she has been working on for a few months!!
  • Pyper very rarely gets mad and frustrated, but when it comes to her physical therapy sessions she tends to give us a glimpse of her temper.  She of course is pushed to do things outside of her comfort zone, outside of her normal activities, and she seriously displays her displeasure with it.  It is so out of character for her that I have to admit it puts a smile on my face.   It confirms that she is a normal little one that can (and does) show her emotions and temper.
  • Because of her G-tube, we take all of JoJo’s clothes to a seamstress and have them altered so that her feeding tube can easily be accessed from the outside. 
  • She is very auditory and keenly reacts to sounds.  She recognizes the voices that make up her world and LOVES anything musical. She has favorite toys, all of which either light up or have music, or even better, have both lights and sound!  She absolutely glows with excitement when she HEARS her toys.  She doesn’t have to see them, she just has to hear them and she smiles.  One of her newest “favorites” ( a red and black lady bug mariachi) makes her so happy that she laughs so hard that she turns red (see the videos below).
  • Her favorite person?  Oh without a doubt I would say it is her big brother Gavin.  They have a sweet relationship.  It is truly beautiful to see JoJo’s face light up when he comes near her and then when he talks to her it is like she explodes with JOY!  Gavin is her protector and his heart for her grows bigger and bigger.  I love that I am privy to seeing their relationship develop and being there to nurture it. 

Life this past year has held mountain top highs and deep, deep valley lows. God has walked with us on a journey of incredible heartache and unspeakable joy.  It has meant heart wrenching days, tears shed, faith tested, faith strengthened and heart ache that seemed unbearable.  We have heard words of diagnosis that have left us breathless and speechless.  We spent too many days in a hospital.  We experienced an astonishing an out pouring of love, support and encouragement from our families and friends.  We received good news when bad news was the prognosis. 

Pyper has taught me that life can be different and it’s okay.  Her “different” is unique to her.  She has taught me what is means to love FIERCELY, to protect FIERCELY.  I truly wish that I could explain what this love is, what it means, how it works, but there just are not words that can adequately describe it.  It’s just different.  I have come to believe that it is a love that is unique and special and is only given to those whose lives are directly touched by the life of a special needs child.  It is a love that cherishes each smile, holds tightly to the sound of her laughter and celebrates each accomplishment as if it were her first!

As I have journeyed on this path over this past year I have often stumbled, at times I walked in great sorrow, at times I crawled begrudgingly and at times I ran.  Whether it was a day of great strength or a day of heartache, I always knew one thing regarding this journey…my God was ALWAYS by my side.  I NEVER doubted this.  It was NEVER my strength that pushed me through a day.  It was HIS.  God was in each tear that I shed, every prayer lifted up, in each diagnosis that was given.  I found Him to be faithful and true.  His promises never wavered or failed.  His love was constant.  He alone is what propelled me to put one foot in front of the other when all I really wanted to do was curl up in a ball and hide from the world.

Does accepting that Pyper is a special needs child mean that I stop praying for healing?  Does it mean that God isn’t able to heal her?  NO, NO and NO.  What it does mean for me is that God is sovereign.  My prayer for Pyper is complete healing.  I want that label of “special needs” to go away, to disappear.  But my deepest prayer is that God would give me faith to trust in the plans that He has for Pyper’s life.  My hardest prayer is asking for the peace to accept what He has for her, even if that includes a lifetime of “different”.  I will never stop praying for Pyper’s healing because I know that one day she will be fully healed and I believe in the One that knows everything about her and loves her even more that we do.

As we celebrate Pyper’s 1st birthday I can reflect on this past year with gratitude and joy.  I am grateful that God blessed our family with Pyper.  She is pure JOY.  I get her all to myself one day a week.  It is a day that belongs just to us.  It is my Pyper day.  I am so thankful and honored to be her Nana.   It is with a fierce love that I wish my littlest one a very happy 1st birthday,

Love you always bunches and bunches and oodles and oodles,

Nana

Today I am THANKFUL  for Pyper and the sweet love that she brings to our family.

Today I am THANKFUL that Pyper has taught me that “different” is beautiful.

Today I am THANKFUL that Pyper changed my world and taught me how to love FIERCELY.

Today I am THANKFUL that we celebrate the beautiful life of Pyper Jo.

Sunday, June 10, 2018

This entry is long over due…

I have lost count as to how many times I have “moved” the reminder on my calendar to post an update. Days turned into weeks and weeks literally turned into months. I am not even sure where to start, but to keep from boring you I will give you a Readers Digest version.

Pyper has been HOMEBOUND for the past 5 months. Life existed inside the confines of home. With the flu and cold season running wild it was necessary to take all measures possible to protect her fragile immune and body systems. With perseverance comes success and we prevailed. Pyper conquered the winter season and remained healthy.

The beautiful summer weather allows for walks outdoors in her stroller (which she loves). We walk around the neighborhood for now, but I am working up the courage to take her to the lake. I have never taken her anywhere in my car, let alone anywhere by myself. We shall see.

We got sweet news this past Tuesday! Pyper had a swallow study done and there was no aspiration seen. She has been cleared to begin a very slow regimen of introducing liquids and Stage 2 solid baby foods into her diet. God is so good. My eyes filled with tears as I read Nicole’s text. Almost 7 months ago the ability to feed Pyper her bottle was taken from us and replaced with a machine. I remember feeling very sad by the realization that there would be no more baby snuggles as you held her bottle and fed her.   I made a promise to always hold her when her feedings were taking place. I knew that she needed that, but I knew I needed it just as much.  I have spent hours sitting on the couch or on the floor holding her as a little machine called a Joey Kangaroo slowly fed her formula through a tub. I can assure you that holding a baby and feeding them a bottle is very different from holding a baby while a machine does the feeding.   There is a feeling of something lost, something torn from you. A deep regret of missing out on “what should have been”. With this news comes a new chapter in Pyper’s journey. This chapter, like the previous ones, presents its own set of challenges. Over the past 7 months Pyper has “lost” her suckling instinct and the normal ability to swallow liquids and solids is not something that she possesses the ability to do. Pyper now has to LEARN to take in food orally because it has been a non-existent need for her. The simple act of swallowing is a task that Pyper will have to work at to achieve.

Dean and I are asked often how Pyper is doing. To answer this question is easy…she is doing GREAT. She is THRIVING. I tell people she is growing like a weed. She is long and thin, just like her big sister Chloe. She sleeps 10-12 hours at night and doesn’t nap much during the day. She is happy, content and joyful. If she gets fussy it is because she is tired or she wants to stand up so she can poop (her favorite position). I know this is TMI, but I have the keyboard and this is life with our JoJo.

There have been no major doctor appointments to report on, no hospital stays. YIPEEEE!!! If I were to give this post a title it would be “Wait and See”.  She is a “wait and see” little girl. We will “wait and see” what God has in store for her. We will “wait and see” when her milestones will occur. We will “wait and see” what she will accomplish. There may be a lot that I do not know about JoJo, but what I do know about this “wait and see” stage is that Pyper is an incredible and precious little one. She has a spirit that SHOUTS strength, a smile that SPILLS forth joy and a laugh that FILLS your heart with LOVE.

She is my SPECIAL little person and I love her bunches and bunches and oodles and oodles.

Love to you my little one,

Nana

PRAYER REQUESTS:

  • For an upcoming sleep study on July 3rd.
  • For muscle strength and tone as we work with Pyper on sitting up (she is close!)
  • For Pyper as she takes on the challenge of learning how to eat.
  • For Nicole (and Brandon) as they prepare for the birth of another little one in July.

Today I am THANKFUL for those that continue to pray for Pyper even though she is not facing anything “major”.

Today I am THANKFUL for life outside the walls of a home…for walks around the neighborhood (next comes church!!)

Today I am THANKFUL for Pyper’s little laugh. It is becoming more frequent and it touches the deep places of my heart.

Wednesday, February 21, 2018

As most of you will know by now because of the quickness and ease of Facebook, Pyper Jo came home yesterday! I happened to be at the house when Brandon came home with her. She was asleep when they first got home, but was awake as I was leaving. All I had to do was talk to her and play with her little feet a bit and she was full of SMILES. (See her smiling picture at the end of this post.) It is always better at home! Pyper’s smile certainly attests to that.

Prior to surgery I put a request out on Facebook asking for people that would volunteer their time to go and sit with Pyper during the days following surgery. This would give a break to Nicole and Brandon, and would prevent so much missed work. I had people lined up to stay with Pyper for 9 days following surgery. I am so thankful for the willing hearts of those that volunteered. Not everyone who volunteered got to fulfill their “spot” (because she did so amazing and got to come home so soon), but they are just as important as those who did.

  • Windy came on Saturday, just 3 days after surgery and spent the whole afternoon with Pyper. She was Pyper’s first caregiver that wasn’t actually a family member. I know that her willingness to come and stay with Pyper didn’t come without some fear, worry and apprehension. After all, Pyper had just had surgery and she had tubes attached to just about every part of her body.  But she came anyway. She walked around Pyper’s room and read all the prayers, notes, cards and scripture. Oh how I love this amazing friend. There are no words that express how much you mean to me.

 

  • Amanda (cousin Manda) came Sunday afternoon and stayed overnight with Pyper. She was relieved on Monday by Brandon around 2:00pm. Amanda and Pyper had never met before Sunday, but I do believe that Pyper stole a small piece of Amanda’s heart there in that hospital room. Amanda learned to either absolutely LOVE or HATE the song Whole Wide World. I was at peace when I left Pyper’s room that Sunday afternoon. I knew that Pyper had a fierce and mighty warrior that would be her advocate for the next 24 hours. This girl holds a very special place in my heart and my life. Love her so, so very much.

 

  • Janie Cox and Connie Putnam were going to be with Pyper on Tuesday and Wednesday but Pyper didn’t give them the opportunity. So thankful they were there had we needed them.

 

  • Hannah and Trevor (my niece and her fiancée) were coming Wednesday night and were brave enough to take on all day Thursday and Friday (9-6pm). I so wish that they would have been able to meet Pyper, because I know that she would have won their hearts as well. My heart is full of love for the servants heart of these two. I hope that Pyper gets to meet them on March 24th when they walk down the isle.

Prior to surgery God had given me the vision to have Pyper’s room covered in prayer (so as not to repeat you can read my entry for Sunday Feb. 11th to know more about this). All I can say is that going to the post office the whole next week was pure JOY. Everyday there were prayers, cards, notes and scripture.

Here is what came from my request on Facebook and here on Pyper’s Journal:

95 individual cards, notes, prayers and words of encouragement from 53 different individuals/families.  (See some pictures of her room at the end of this post.)

I couldn’t walk into JoJo’s room without feeling the love that filled Room 332. It just made me smile. At times I would see people that were out in the hallway stop and read the notes that were on her door. I hope that they were blessed just by reading these words that were written. I wanted people to know that the little girl who occupied this room was COVERED IN PRAYER and loved by her family, by friends and by her PRAYER WARRIORS. I simply can’t say how thankful I am to all those that sent these beautiful words of love. I will be keeping them and putting them in a treasure box for Pyper. I can’t wait to be able to share them with her one day.

This entry has been more “informational” than I thought it would be. About half way through I realized that there are things inside of me that I want to share, but not today, not in this entry. I feel like I am still processing some things and need some time to put things in place before I share.

Prayer Request:

  • Continued healing of incision sites and G-tube site.
  • Covering of protection from sickness/illness/germs over Pyper’s home

Today I am THANKFUL that Pyper is home!

Today I am THANKFUL for the daily and continuous prayers that were lifted up on Pyper’s behalf!

Today I am THANKFUL that Pyper came home healthy!

Today I am THANKFUL for the incredible nurses that took care of Pyper, as well as, her family and caregivers! They were an incredible team!!

Today I am THANKFUL for Dr. Kiser. Thankful that Pyper has a doctor that is a believer, not to mention an amazing surgeon that totally ROCKS laparoscopic surgery!

 

Thursday, February 15th

Please let me start by saying we are sorry this post did not get out sooner!  

Between being at the hospital yesterday, heading back to pick up the other two grand kids, celebrating Chloe’s birthday dinner (her birthday was Tuesday), celebrating her birthday with presents when we got home, and getting them both in bed, yesterday just escaped us.  And today was just as busy, as Cheryl went to the hospital early to relieve Nicole so she could go to work for an obligation she had to be at, then she went to work, and I took the kids to school, followed by work.  Then for both of us, dinner with everyone, basketball practice for Gavin, homework, showers, etc., etc. On and on it goes. You get the picture. Life is crazy right now  

By the way, this is actually Dean posting tonight, as Cheryl is still busy with the other grand kids this evening.

Nicole, Brandon, and Pyper had a very early start yesterday, as they had to be at the hospital at 5:30am.  Surgery started a bit later yesterday than planned, as they had a bit of an issue with her IV and blood work, and then it went a bit longer than expected, as the doctor had a few difficulties in seeing as clearly as she needed to, and had some minor difficulties with the equipment she used, etc.  

But per the doctor after surgery …. she was thrilled with what she saw when she was in there, as there were no signs of any previous “damage” to her intestines like they sometimes see, and she was able to do it all laparoscopically with three tiny incisions.  While in there, she also removed Pyper’s appendix for preventative reasons, as it was not in the location that most of ours is due to her mal-rotation issue.  I say preventative, as later in life she might have had a pain in a different spot than normal, and she might get misdiagnosed due to them not knowing her appendix was in a different location.  And she was able to put in the g-tube feeding line directly into her stomach that now allows the removal of the ng tube that has been down her nose for several months now.

The doctor was very pleased with how the g-tube part went as well.

Needless to say, we believe all the prayers from so many people were directly answered!

Once out of surgery, Pyper went to PICU and slept for quite a few hours.  Not too surprisingly based on past experience, Pyper had a bit of a rough time as the anesthesia wore off, and she seemed to be in pain and discomfort, so on top of the regular pain medicines, they gave her a small dose of morphine which helped a lot.  

Pyper did extremely well last night, sleeping until 5:30am, which helped Nicole get some rest as well.  They continued her on the morphine today which continued to help this morning and all day today each time see she awoke in some pain and discomfort.

The doctors and the surgeon were in today and were all very pleased with her progress today, how the wounds looked, how the g-tube looked, and how her tummy was soft. All great signs!

Because everything looked so good, the surgeon took out her g-tube incision drain line, which helped her be held and moved around better.

The doctor also feels like the morphine can stop tomorrow.

Pyper has not gotten to eat for over 48 hours either, so I am sure part of her discomfort is being hungry. Pretty hard to explain that to a 7 month old.  😉

The other great news, is the surgeon is so pleased with how things have gone, that she thinks Pyper will be able to go home in 3 or 4 more days, which is way sooner than we all expected.

I will leave you with a bonus as I close out this post. As you may remember, Cheryl had asked people to send her letters of prayer for Pyper. Cheryl was able to post them on her PICU door and in her room today.  As the surgeon was coming in to see Pyper, she stopped outside the door and read the ones on the door.  She came inside with a big smile and said “wow”.  Cheryl said wait until you see all the ones inside the room and showed her.  Cheryl had the chance to ask the surgeon if she was a believer and she said yes.  So Cheryl was able to tell her that herself, the other doctors and nurses, and the Operating Room itself, had been completed covered in prayer by so many of our family and friends, and that we know God showed up in a big way!

So, all in all, we could not have asked for things to go any better than they have so far!

Today we are thankful that:

  • Pyper has been surrounded by the presence of the Living Lord!
  • Pyper has a wonderful and extremely skilled surgeon!
  • Pyper has a wonderful team of caregivers, from the rest of the OR / surgery team, to the PICU nurses, to the respiratory therapists, etc.!
  • Pyper is healing well and quickly!
  • Pyper may get to home home sooner than expected!

 

Check these out!

Room 1

 

Room 2

 Room 3

 

Room 4

 

Room 5

 

Room 6

 

Room 7

 

Room 8

Sunday, February 11, 2018

Happy Sonday to all who will read this journal entry, and thank you for taking the time to catch up on what’s happening in Pyper’s world!

Surgery for Pyper’s GTube and LADS surgery has been set for Wednesday, Feb. 14th at 7:30am. (Let it be heard that I believe that God has re-positioned Pyper’s bowels, and that there will be nothing for the surgeon to do … except to say “wow, I have never seen such a thing”!!) Like I have said all along, PRAY BIG, EXPECTING BIG THINGS. This has been my prayer, that God would miraculously move Pyper’s bowels and place them where they are supposed to be. I believe in miracles and I believe He is going to show us one this Wednesday.

Pyper will be in the hospital for at least a week, but could be as long as two weeks. I have spent time these past few days setting up a schedule that will provide someone to be with Pyper around the clock while she is in the hospital. While Nicole and Brandon will be with her a lot, they can’t be with her 24/7. The logistics of having her in the hospital require a whole lot of coordination of schedules. It’s not just Pyper that needs care, but Gavin and Chloe as well. Who is picking them up from school, where will they be one night and then the next? Who will get them to dance and basketball practice? When will they get to see Nicole (mommy)… and the list goes on and on. The next couple of weeks will be mentally and physically exhausting as Dean and I help to keep all the pieces to the puzzle in place.

God has shown me a couple of things during my quiet time (and not so quiet times) that center around Pyper’s surgery. About a week and a half ago God told me to invite His presence to dwell and inhabit Pyper’s room. This was not to be just a one time prayer, but He told me to pray for this each day. As I thought on this I came to realize that this could be something that everyone praying for Pyper could do. I want Pyper’s room to be a place where the very Spirit of God dwells. I want everyone who enters her room to sense and feel that there is something different there, that God is there in all His fullness.

God also gave me a vision of Pyper’s hospital room being covered in prayer. Literally covered in prayer. What I saw were hand written prayers posted all over her room! It didn’t take me long to realize that these were to come from family and friends, from Pyper’s Prayer Warrior’s. So I got on Facebook and asked people to write out on plain white paper, words of encouragement and prayers for Pyper and her family. I will take these and place them all around her room. Everyday these prayers will be read out loud and the heavens will resound with prayers on Pyper’s behalf. If you would like to send a prayer or words of encouragement please send them to: Dean and Cheryl Chouinard PO Box 1579 Waynesville, NC 28786. She will be in the PICU for at least the first couple of days following surgery. Once she is out of the PICU we will cover her room with your prayers. Don’t delay…snail mail will take a few days. I have never been so excited about getting the mail everyday!!

I will post an update each night to let you know the “happenings” and “goings on” of the days events beginning Wednesday. Stay tuned…….

Prayer Requests:

For Pyper to remain healthy leading up to surgery

For the Holy Spirit to inhabit the Operating Room

For Pyper to handle the anesthesia

For the surgeon who will perform the surgery

For no complications before, during or after surgery

For healing that will be quick and complete

For Nicole and Brandon

For the rest of the family that carries a burden for Pyper, Nicole and Brandon

For Gavin and Chloe

For God’s Spirit to totally saturate Pyper’s room

 

Today I am THANKFUL for friends and family that have volunteered to come and sit with Pyper at the hospital.

Today I am THANKFUL that Dean and I can be a stable and constant presence for Gavin and Chloe as they navigate these days of uncertainty and upheaval in their lives.

Today I am THANKFUL for a God that gives peace in the midst of our storms.

Tuesday, January 23, 2018

I love it when God shows up and “shows off”! And then I get the honor of sharing with all of you just how GREAT He is.

Pyper had her eye appointment today and it brought “shout it from the mountain tops” news (I hope that you can hear me screaming right now). The full results are listed below, but the biggest and “bestest” news is that Pyper’s vision has gotten better!! Her vision not only didn’t get worse, nor did it stay the same, it got BETTER!! I couldn’t stop smiling and of course there were a few tears of joy added in there too! Thank you to all who have faithfully prayed.

When I pray for Pyper I get a mental picture of her and begin at the top of her head and work my way down her body as I pray, lifting up each area of need. Pyper’s vision has been a prayer “priority” for me. I find myself praying for it the most and longest. It’s not that her other needs are less important, it has just always been a top prayer request. I have always believed that those big blue eyes would fully see the beauty that God created. While this is incredible news, I won’t stop praying, because God is still busy at work in this little one. I pray big, expecting big. I want to see 20/20 vision…my God is able.

Pyper had her Physical Therapy evaluation today as well (notes listed below). She will now add a physical therapist to her repertoire of home health care visitors. Along with this addition we have added Occupational Therapy too. Both OT and PT will begin after her GTube / LADS surgery. Her surgery has been set for February 14th at 7:30am in Asheville.

Prayer Request:

Pyper’s upcoming surgery on Wednesday, Feb. 14th

 

Today I am THANKFUL for Pyper’s improved vision

Today I am THANKFUL for those that come and work with Pyper (Vision and Speech Therapy and soon OT & PT). She has an incredible team of therapist!

Today I am THANKFUL for the home health nurse team that is being assembled and will be starting next week.  This will provide some help and give some schedule flexibility.

Today I am THANKFUL that God has once again shown His power.

Today I am THANKFUL for the power of prayer.

 

Doctor’s Notes:

Pyper Dr. Bashinski Eye Surgeon 1-23-18

  • Prefers right eye for vision
  • Left eye drifts sometimes
  • Doesn’t need glasses now … a little far sighted but normal for her age
  • She can’t see planes … she can see within 10 feet ….
  • Her vision has gotten better not worse …
  • Still no nystagmus …. which indicates better vision … Dr. said you would probably see it by this age if she was going to have it
  • Exotropia is drifting in left eye … could be genetic … could be to poorer vision …. could give glasses but Dr. Doesn’t want to … could patch it
  • Could patch about an hour a day
  • Patch dominant eye … could patch both if each is seeing
  • A patch will not straighten the eye … could consider surgery about 4 to 5 years old if needed
  • Patch when alert not sleepy
  • Oculomotor apraxia could be a possibility because she is turning head to see … it means she can’t move her eyes fast enough so they turn their head to see
  • Dr. said she feels she can see across the room pretty decent within 10 feet at this point
  • Vision is probably 20/70 or worse, which is considered visually impaired
  • Come back in 6 months for check up

 

Pyper PT Initial Evaluation 1-23-18

  • Massage hands and feet
  • Stretch hamstrings to help sit up
  • Try to have hands rest together
  • Tuesday around 130
  • Maybe get some lighter smaller… easy to hold toys… don’t have to

Monday, January 22, 2018

It has been a month since I posted last. This in and of itself is great news. It means that everything in Pyper’s world has been good. The Christmas season came and went and a new year began. The beginning of the new year finds me taking care of Pyper on Tuesdays, along with my normal Thursdays (a double blessing). I have found myself thinking about Pyper a lot over these past couple of weeks since 2018 quietly slipped into place.

My post tonight reflects the heart of a Nana that is so often torn between laughter and tears. As I sit with Pyper and am able to spend so much time with her, I find that my mind spends a lot of energy reflecting on her. I find myself with so many thoughts that mingle and tumble within the confines of my head. Some I want to share, others “not so much”. As I struggled with what to write, and what not to write, I realized that putting them down on paper is therapy for my spirit. My journal entry tonight is me being transparent. A pure and raw glimpse into the inner part of my heart that holds a very special place, for a very special little person…

Special needs baby. This is a term that I have truly struggled with. My mind tells me that this describes her in the medical sense. My heart just doesn’t want to fully accept the fact that she is different. My faith doesn’t want to say special needs because I feel like I am saying that I accept the way Pyper is and that I do not believe that God can fully heal and restore her.

I go into Pyper’s room to put away her jammies and I see a closet full of cute little girl outfits. Tags still hang from them. Never worn. With all of her tubes it is much harder to get clothes on her that go over her head. She isn’t allowed to leave the house except for doctor appointments so she stays in her little one piece jammies. She would have been so cute in them.

Pictures. We don’t get those picture perfect photos that the world would look at and say “wow, what a wonderful picture”. Pyper’s pictures show a sweet little girl, with a precious smile and big blue eyes, but with tubes coming out of her nose and tape all over her face to keep those tubes in place. I want those “wonderful” pictures. What I really want is for all the tubes and tape to go away.

I miss being able to give her a bottle. It seems like such a simple task, one that is taken for granted until you can’t do it anymore. I hold her while a little machine sitting on the table next to us feeds her, but it isn’t quite the same.

I want to be able to take Pyper to church with us. She can’t. Her body systems are too compromised right now. If she gets sick, it would most likely put her back in the hospital.

Normal. I have come to dislike this word. It speaks of what isn’t “right”. It is a word unfortunately that often finds itself being used when talking about PyJo. You see, Pyper is almost 7 months old and she doesn’t roll over, she doesn’t reach for toys, she isn’t all giggles and laughter. We don’t know when she will sit up by herself, when she will crawl or when she will walk. I believe without a doubt that she WILL do these things but when compared to others, Pyper isn’t normal. But she is our normal.

Pyper can see, this we are sure of. What can she see, or how much is the big unknown. For me, of all the issues that surround this little one, her vision is what tugs at my heart the most. I often wonder what it must be like for her. I know that she knows no difference other than what she is used to, but how frightening it must be to not be able to fully see your surroundings. She startles easily if there is sudden movement that her eyes catch hold of. When I see her reaction my heart just sinks because I am aware that this must be scary to her. I talk to her constantly when I am with her because I want her to know that she is not alone. There are times that I leave the room for just a bit only to come back and find her crying. Did it scare her that she couldn’t see anyone? I immediately start talking to her, scoop her up and hold her just a little bit tighter as I reassure her that I am right there with her.

None of these are thoughts that I ever imagined would be a part of my world. I don’t like that they find an entrance into my mind. I wish that they didn’t, but the reality is that for now they do. For now…

I have shared the thoughts of my heart that often bring pain and sadness but there is another side. This is the side where I dwell…

God blessed our family with a little girl. She is a gift from Him. Pyper is pure joy. She is content, happy and easy going. She has an incredible smile and big, blue eyes that can light up a room. She is strong in spirit. She is a fighter. She has an infectious little giggle. I take each and every smile and giggle and tuck it away in a place that holds all of her milestones. Her milestones will happen at a different pace than others and that’s okay. I cheer her on each time I hold her. She is loved and treasured beyond measure.

God has taken our family on an unintended journey with Pyper. Not one that we would have chosen, but here we are. Pyper’s journey has plunged our family into an existence that no family ever wants to find themselves in. It is an existence that has changed the dynamics of our lives. It is the experience of raising a special needs baby.

Prayer Requests:

  • Tuesday, January 23 Pyper has her quarterly appointment with her ophthalmologist. I am believing that her doctor will see a great improvement, and will have a great report for us.
  • Upcoming surgery (Just scheduled for February 14th) for her LADS and G Tube.

Today I am THANKFUL for the hours that I get to spend with Pyper. They are a priceless treasure.

Today I am THANKFUL that Pyper has a mommy and daddy that are such amazing parents.

Tuesday, December 19, 2017

Sorry to have not posted in a while, but there is really not much to report on right now, as Pyper Jo is just enjoying life outside of the hospital, and has not had too many doctor’s appointments right now! 

Here is some Pyper Jo joy and sunshine for your day🌟. I had her toy and she was having a great time watching it. She loves the sound and usually starts to smile when she hears it.

 

Wednesday, December 6, 2017

Home at last!

Pyper was discharged late yesterday afternoon and they arrived home around 10:30pm last night. It has been a long 10 days …

10 days of:

  • hospital food
  • being confined to a hospital room
  • being away from Gavin and Chloe
  • 7 days of missed work for both Brandon and Nicole
  • not sleeping in their own bed
  • not sleeping well

When they left home a week ago Sunday, it was supposed to be just an over night trip. It turned into much more. This past week has been a whirlwind of doctors coming and going.

I am sure that Brandon and Nicole were overwhelmed at times with the amount of information that was shared with them. Words were spoken that neither of them had ever heard before (thank goodness for Google)!

Pyper has an incredible team of doctors that worked tirelessly these past 10 days to try to figure out what was causing her breathing issues. This past week has been the first time that our prayers were actually asking for something to be wrong, as it was our hope that they would find the reason that she struggles so hard to breath. The end results show nothing majorly wrong. Don’t misunderstand, this is good news too, it’s just that if they found something, we were hoping it could be “fixed” so that Pyper could be free of needing supplemental oxygen.

But since they did not find anything to “fix”, she ending up coming home on a higher oxygen level than when she was admitted. This will allow her to breath a little easier.

Here is the recap and summary of what this past week at UNC Chapel Hill Children’s Hospital provided:

  • Pyper has obstructive apnea that is in the back of her throat / pharynx. This basically means her airway collapses when she sleeps (explains why she needs the oxygen when she is asleep but not when she is fully awake). Nothing can be done right now to fix this other than to monitor her nutrition and calorie intake to make sure she isn’t burning more calories with her breathing than she is taking in.
  • She will need another sleep study in two months.
  • She needs a higher flow of oxygen to compensate for her rate of breathing. They were told from the airways team she will grow out of supplemental oxygen as she grows and gets stronger.
  • Pyper will have surgery in January for her Gtube and Lads procedure (tacking down her bowels). The doctors have told them that they should plan on Pyper being in the hospital one to two weeks. UGHHHHHHH. Not something that anyone is looking forward to.

Prayer requests:

  • Pyper has been approved for full time care by an RN (while Brandon & Nicole are at work). Now they need to find one.
  • Physical protection over Pyper. Because her body’s immune system is compromised, she can easily end up in the hospital if she gets sick.

Today I am THANKFUL that Pyper, Nicole and Brandon made it home safely.

Today I am THANKFUL for Pyper’s incredible team of doctors (here in Waynesville, Asheville and Chapel Hill)

Today I am THANKFUL that Gavin and Chloe will have their mommy and sister back home with them.

Today I am THANKFUL that I will get to hold my littlest one this afternoon 🙂