The Walk Around the Sun

Today Samantha turned 4 years old.  We started her birthday celebration on Saturday with a party and it has continued in to today.  I grew up bringing homemade cupcakes and other assorted sundries to school on my birthday.  Samantha's school approaches it differently.  I have to say, at first I mourned the lack of brownie, cupcake, ice cream sundae making.  Mostly because I love to bake.  However, I both loved and hated what we were able to do for her today at school.  

At Samantha's school, on the child's birthday, the child walks around the sun.  The parents are invited to participate in the walk around the sun and bring an allergy free treat in to share with the class.  So, what is the walk around the sun?  Well, all of the children sit in a circle (ellipse for the Montessori folk) on the floor.  In the center of the circle is a small table with a candle on it.  The candle represents the sun.  Then the child holds the globe and walks around the ellipse one time for each year of their life.  So, Samantha walked around the sun 4 times.  At the end of each lap (for lack of a better word) the parents share something special about the child from that particular year, starting with a story about the day of their birth.  So, Jason and I were able to share some details about Samantha's life with her friends.  On the one hand, I love that we were able to share with Samantha in such a meaningful way.  She loved the board we made with her pictures.  On the other hand, as we got to years 3 and 4, years that have largely revolved around Alli, I found our comments regarding her life to be so insignificant given what she has endured.  I struggled with how to convey to 3, 4, and 5 year olds what Samantha has truly experienced these last two years in the allotted time frame.  How do you explain that Samantha had a little sister and we were so hopeful that they would be so close in age and best friends and that things have just gone horribly, tragically wrong?  But, that amidst all of that hope and expectation that Jason and I had, Samantha is the one that goes freely in and out of Alli's room throughout the day to sit with her and the nurse.  She doesn't know the difference.  She recognizes the hospital mascots, Hope and Will, with the same enthusiasm that children her age show for Dora and Elmo.  She has a medical vocabulary that rivals some first year nursing students.  While her friends are going on family vacations to the beach and Disney World, she is on staycation in our house.  She has accepted that there are many nights when only one parent sleeps at home or weekends where only one parent can be with her and that time is often spent running errands or doing things around the house.  She doesn't just have one set of parents.  She has her parents and her grandparents often living under one roof, all with different rules and expectations of her.  So, here is what I would have liked to have said, "In years three and four, our family faced some unimaginable challenges, and they will likely continue in to year five.  During those times, Samantha has lovingly attended to her sister, accepted her as she is, and allowed her to be our focus.  She lives with a great deal of uncertainty surrounding her household, but displays a tremendous amount of confidence in herself and our relationship with her.  She is living a very different life than what we had planned for her and is probably the most well adjusted of all of us."

October 20, 2013

If all things continue to go well, Alli will go home tomorrow.  She was transferred to the TICU (technology dependent intensive care unit) on Friday afternoon.  They sent her here instead of sending her to the normal patient floor.  She is almost back to her baseline and expect she will be there tomorrow.

So...what happened.   We determined the cause of her vomiting was attributed to her j-tube being coiled  and drawn back from the intestine.  This was causing her feeds to back up in to her stomach and then the associated gagging and retching.  Since her G/J tube was replaced, she has tolerated her feeds and we have been able to wean her almost all the way back to where she was on her day time oxygen and bipap routine.

We had an otherwise uneventful weekend.  Both Samantha and Joshua were recovering from croup, so we missed two birthday parties, but decided to spare the other families the joy of croup.  Below is a picture of Samantha and Josh from this morning.  I call it "the Princess and the Pea"

This week we are preparing for Samantha's 4th birthday, which is October 28.    It will be so nice to celebrate with her!  More to come on the festivities...

 

October 16, 2013

Alli was home for exactly 8 weeks.  It was her longest time at home in a year.  During that eight weeks many things happened.  See the photos below...

Josh started sitting up AND took up the piano!

Alli and Josh shared some deep conversations and playtime in her bed.

We went apple picking at BJ Reece Apple Orchards.  It was a beautiful day for the drive up in to the mountains.  We took my mom (yes, occasionally we allow her to leave the house), Samantha, and Josh.  Alli stayed home with the nurse because we were concerned about wheeling her around the orchard in her wheelchair - it isn't exactly trail rated.  We'll have to get Grandpa John to see what he can do about that ;)

Alli's wheelchair arrived!  It is custom made for her and has her name embroidered on it in purple.  She looks great in it and has already been out for several walks!  There is a special compartment for her oxygen and an IV pole for her feeding pump, which makes things much for convenient when traveling outside the house.

First walk in her new ride!  She was super excited about it, as you can tell.

Samantha participated in her second Montessori Mile.  She loves to run!  This year she ran with the 3 year olds, but we are considering signing her up for the full mile next year.  The Montessori Mile is a fundraiser at her school, Springmont.  Following the race they had activities on campus, so we spent some family time enjoying the festival that we primarily organized and run by the middle school students. 

Samantha started gymnastics at the YMCA by our house.  This past week was her first time up on the 'big girl' balance beam and the bars.  Sorry the pictures are so dark - but I thought they were too cute not to post!

Early this morning we brought Alli back in to the hospital.  She had some gagging and vomiting episodes yesterday afternoon and last night and we were unable to give her enough oxygen through the bipap for her to recover at home.  So, she is in the PICU for observation.  She slept very comfortably most of the day today.  They are going to make an adjustment with her feeding tube, which they think may have been the culprit of the gagging and vomiting episodes.  Overall, we hope this will be a short stay.  We continue to talk with the palliative care team about Alli's treatment and our primary focus right now is to keep her as comfortable as possible.  That has been our focus at home, as well.  For the time being, we have narrowed her specialist follow up visits to only the essential systems (Cardiology, Pulmonology, Neurology, and Endocrinology) and make periodic visits to check in with the feeding specialist and physical therapist.  Hopefully once her medicaid application is approved (God willing) we will be able to set her up with in home therapy.  Her physical therapy regimen now consists primarily of passive range of motion activities, but she is showing some small signs of increased strength.  She is starting to lift her head again for very short periods of time.  We don't see any independent movement of her legs, but we do see independent movement of her arms.  She is localizing to sound and we continue to work on fixating on objects, pictures, faces, etc.

We will keep you posted as things evolve in the hospital.  We hope you all are doing well!