What a difference 1 year makes...

A sense of nostalgia seems to run in my family.  While I certainly enjoy the present and look forward to the future, I find that I am often referring back to what I was doing the previous year.  When I think back to the holidays last year I remember how excited we were to travel to Raleigh to celebrate Thanksgiving with Jason's brother and sister in law and their family.  I remember the sense of accomplishment and hope after our long awaited trip to LeBonheur and our meeting with Dr. Wheless regarding Alli's seizures.  Then I remember that Christmas was the beginning of the end.  I had significant concerns during that hospitalization about the fact that her level of care was escalating between hospital visits.  She was requiring greater and more invasive forms of oxygen support and seemingly without explanation - outside of illness.  Even then we had a difficult time weaning her off of the oxygen.  While I miss Alli, my greatest struggle is reliving her suffering.  I know she is in a better place.  I find myself going back and revisiting hospitalizations, specialist visits, decisions we made.  Images of her that at one time brought me great hope for healing and a brighter future haunt and disturb me.  At the time intubating her and subjecting her to invasive respiratory treatments seemed necessary, if only we could get her well enough to recover and move past it.  Looking back on it now, I can't believe we ever subjected her to that…not just once…multiple times.  I would give anything to hold her again - not if it meant she would be here and in pain - but just to hold her the way she was before all the tubes and machines and medicines.

The holidays this year have been full of family, friends, and good food.  We hosted Jason's entire family for Thanksgiving.  His sister and her family from Boston, his brother and his family from Raleigh, and his parents.  15 people under 1 roof.  It was what you would expect…fun, stressful at times, chaotic.  It was family.  My niece, Alexa, is 8 days older than Samantha.  It was so nice to be able to spend some one on one time with her.  She sat in my lap and wanted to talk about Alli and look at her photo album and make a picture for her room.  It was a cathartic experience for both of us.  I think, sometimes, people are afraid to talk about Alli with us, but the innocence of children and their questions and quest for understanding put things on a whole different level.  You can't brush aside their questions, which are at times persistent.  But it is important to talk about Alli and I am so grateful that she sat in my lap that night and we spent that time together.  I will never forget it.  We also managed to get a full Hakerem family photo.  It is the first time that the whole family has been together, so we wanted to make sure to get a couple of good shots of everyone, especially the grandparents and grandchildren.

A few Thanksgiving Photos:

Samantha and Alexa with their favorite mom/aunt :)

Paul getting a break from the action at the swings.

Buddies...

The cousins...

Sweet girls...

 The boys...

Christmas has been so nice.  My parents are in from Detroit, my sister and her family are in from Chicago, my brother is here from California, and my grandmother is here.  It was so special to have everyone together, especially my grandmother.  After the gifts were opened this morning, she and I spent the late morning cooking her sauce and meatballs.  What a memorable experience.  I am trying to perfect her recipes so we can have that occasional taste of home and so that I can pass the recipe down to Samantha and Josh.  I have some yarn and knitting needles set aside for tomorrow.  We'll see what comes from that!  I found myself a little scroogish yesterday and today.  I was so caught up in the surprises for Samantha that I completely bit her head off a few times.  Yikes!  I think I lost sight of the holiday for a minute (or few).  Hopefully she isn't permanently scarred.  Jason and I are looking forward to spoiling her with the some afternoon outings in the coming days so we can have some two on one time with her without Josh in the mix.

A few Christmas Photos:

Uncle Paul is SO fun!

Samantha and Millie before Christmas Eve Mass

Samantha studying her new toys

 Josh getting ready to take a bite out of his new toy…still waiting on that first tooth!

 Josh <3 p="">

 Samantha showing Josh how it's done on Christmas morning!

 Samantha <3 p="">

 Josh staring down his new ride on puppy

 just checking...

In between the holidays we had some family outings. We took the kids to the botanical gardens one night to see the Christmas lights.  We also made the big trip downtown to see the Christmas parade.  We are making every effort to take advantage of our family time and experiment with some family traditions.  I took Samantha and Josh to South Carolina last weekend to see my goddaughter, Anne, in the Nutcracker.  I have wanted to go for the past 4 years, but haven't been able to travel up there for one reason or another, so this year, we made a point to get there.  It was a fun little day trip.  Below are a couple of photos from our family adventure:

Josh's first trip in the shopping cart at Publix…where shopping is a pleasure…unless you're toting a 4 year old and a 9 month old...

Samantha and her buddy Gabriela Elisa at the Botanical Gardens

 Family photo at the Botanical Gardens

 Family photo at the parade - no we did not go to Bulldogs for lunch after the parade ended

Samantha has been doing pretty well.  She still asks a lot of questions at times.  The big news is that she is starting to read!  It is amazing listening to her sound out words.  She is so excited about it and proud of herself.  She is also enjoying dressing herself and engaging in pretend play.  Sometimes she likes to assume alternate personalities when we're out and about...

Josh has also been doing well.  He is officially a crawling machine and is pulling himself to stand.  We made the move to lower his crib all the way down.  He is babbling up a storm and starting to feed himself pieces of soft food - so far we have experimented with banana and avocado.  Next up will be peas and diced carrots, once we have worked through the stock pile of purees in the freezer.

Posing for the camera

 Helping with the dishes

Transition

Initially I started my blog to keep people up to date on what was happening with Alli.  It was a way for me to document her medical journey and occasionally mix in my thoughts and perspectives on our situation.  My intention is to continue to blog about our family, including Alli, as I'm sure that as we navigate through the grieving process she will continue to make herself present in our lives.

During the last few weeks of Alli's life I was planning how I would transition to being more involved with her care.  We had the assistance of wonderful nurses, but I was concerned about insurance cutting back our nursing hours and I felt that I wanted to take a little more active role in her care.  Once hospice was involved I figured that they would be able to give me an indication of when she was in a more active state of dying and then I would work to transition to caring for her in those final days/weeks/however long it lasted.  It was a privilege to care for her.  The only reason we didn't cut the nursing off sooner was because of the level of care that she required and the impact that it would have on Samantha and Joshua.  The indefinite nature of her illness and the even the remote potential for recovery made us feel as though we were better off having assistance with Alli to ensure we could keep balance in our home.

Alli's daily routine, without medical appointments or therapy visits, consisted of the following:

5:30 am - give a small amount of apple juice through her g-tube to help prevent her from spitting up her morning medicine.

6:00 am - give lasix and depakote

8:00 am - give prevacid, onfi, aldactone, culturelle, folic acid, calcitriol, multivitamin, and potassium chloride.  meds were spaced 5-10 minutes apart to avoid overloading her.  Once she woke up, we would take off her bipap, put on her nasal cannula, give her a breathing treatment and an inhaled steroid.

9:00 ish am - after receiving her meds and breathing treatments, we would give Alli a sponge bath in her bed.  I had an extra changing table mat that we would lay on her bed and either I or the nurses would bath her on it.  We had hoped to get a bath chair for her so that she could sit in the bath tub, but insurance didn't come through on that and we were in the process of working on medicaid.  I did concoct a plan one day to bathe her in the infant tub rigged with a Puj tub (the Puj tub is awesome - by the way.  i still occasionally use it to bathe Josh :)).  So, I filled our infant tub with water and placed it on the floor of her bedroom.  Then I used the Puj to extend the back of the tub so that she would have head and neck support.  I placed her in the tub and thought everything was great.  She appeared to be somewhat relaxed and soothed by the water…until the stopper came out of the bottom and water flowed out on to her carpet.  I was so disappointed.  We never stopped trying to figure out ways to make her as comfortable as possible.

10:00 am - levocarnitine

usually after her bath, we would get Alli out of bed on to the floor.  we would do passive range of motion exercises (Jane Fondas - according to nurse Carol), read books, listen to music, work with sensory toys, etc.

12:00 pm - synthroid

usually by now, Alli was ready for a nap, or already sleeping.  sometimes she slept on the floor with pillows and blankets around her.  other times she would nap in her bed.

2:00 pm - depakote and lasix

after her 2:00 meds on nice days we would try to take Alli out for a walk in her wheelchair.  if it wasn't nice weather then we would try to bring her downstairs to be with us or out on to the patio.  some days she stayed in her room and Samantha would go in and visit her there.

7:00 pm - start of the bedtime routine- usually changed in to pajamas

8:00 pm - prevacid, onfi, and potassium chloride followed by breathing treatments then we put the bipap on

10:00 pm - depakote, lasix, and levocarnitine

Throughout the day Alli would go back on her bipap machine.  She was supposed to be off for 3 hours than on for an hour, 3x per day.  Then she wore the bipap machine over night.  When she was awake on the bipap she would produce a tremendous amount of foamy secretions from her mouth.  We were constantly wiping her mouth to help keep it clear.  Usually by the morning her lips would be chapped and we would begin the process of moisturizing them.

We had to be very conscientious about giving her medication as there were many times when she would spit it up.  Therefore, we tried to make sure someone was always in the room with her and that we didn't jostle her around too much after receiving a medicine.

Alli was connected to her feeding pump for 20 hours each day.  She had a special formula of single calorie pediatric compleat mixed with pedialyte and lite table salt.  We chose compleat because it is a whole food based formula, as opposed to a chemical based formula like pediasure.  She tolerated the compleat better than the pediasure and it was a compromise for me when the whole food blended diet I attempted didn't work out and couldn't be maintained in the hospital.

Maintaining the above schedule for her, without the extra hands, seemed impossible on a long term basis without neglecting Jason, Samantha, and Joshua.  I had hoped to be able to do it for a period of time, but perhaps it was better that we maintained the balance through the end.  I know that I cherished and took advantage of every opportunity that I had to personally care for her when we didn't have nursing available and I am so grateful for those days and nights.  I viewed them then and still now as a gift.

On the days the nurses were here, often there were errands to be run, prescriptions to pick up, the medicaid application to be filed, calls to the doctor, appointments to be made, etc.  There was never a shortage of things to do and there was always something to do throughout the day for Alli, even if I wasn't in the room with her helping with her meds and playing on the floor.  I am so grateful that we had such wonderful nurses to engage with her during the day while I was taking care of those other responsibilities.

So, now we transition to quieter days.  I find myself a little less distracted and better able to focus on activities with Joshua and Samantha.  Samantha still asks me if Sylvia and Carol, Alli's nurses, will be coming back.  I explain to her that they were here to care for Alli and that we might see them occasionally, but not every day.

We took Samantha to the cemetery on Tuesday to place the temporary headstone on Alli's grave.  She does not know that Alli's body is buried there.  For now we told her that our piece of land there is a special place where we can go to remember Alli.  When we pulled in, Samantha asked from the back of the car "is this heaven?"  I told her no, that it was a special garden where people came to remember people they loved who had died.  Some other questions that have come up - when is Alli coming back?  Does Alli have her machines in heaven?  I cringe every time I have to tell her that Alli is not coming back.  I tell her that we carry her in our hearts and that she is with us everywhere we go, but her body is not coming back to us.  The conversation about machines in heaven was a good one.  It was more comforting to explain to her that when a person goes to heaven they don't need machines, that there body becomes like new and there is no more pain and suffering.  There is great relief for me in that explanation.  Below is a photo of the headstone…

On a personal level I have had to get comfortable to the change in our house and our day to day lives.  In some ways I am thankful for the time we had to transition from being a family of 5 to a family of 4 +1 angel.  We had been out without Alli a few times and had taken photos of the 4 of us together.  To me it always seemed incomplete without her, but I knew we needed to move forward for everyone's sake.  I feel like I have been grieving her death for 8 months already, since the night in February that I had to call Jason to come back to Egleston because they had intubated Alli and placed the central line.  Though she ultimately survived that hospitalization, to me it was clear from that night on that her life was in serious jeopardy.  Her care had evolved to such an acute level that any type of complete recovery would have been miraculous.  For that night and the months that followed I had to get used to other people caring for her around the clock.  I lost the ability to hold her on a whim without any devices attached to her.  Getting her out of the bed was a production and it was difficult to make her comfortable with that tube down her throat or the full bipap mask on her face.  I missed then and I miss now the feeling of holding her and her sinking in to my chest and lap.  It was an indescribable feeling of peace.  I will never forget holding her the day before I delivered Joshua.  Wondering if that was the last time I would hold her, not knowing what the future held for her given how sick she was.  I was envious of the nurses who spoke so freely with her as they went about their work caring for her.  They never made it seem like work.  I never knew what to say to her while she was lying there.  I know that it is part of their job to talk with the patient.  I just often times found myself speechless and I would just sit there with her.  Even now, knowing she is in heaven, I can't find the words.

Ok - let's end on a good note.  Joshua is almost crawling.  He is getting on all fours and rocking back and forth and I swear he inched himself forward today.  He slides himself backward on the hardwood floors.  He's like a human swiffer.  We also had a fun impromptu visit to the park on Wednesday.  It was nice to be able to go on a whim.  Josh didn't have a coat or socks (yikes!  bad mom!), but I did have a warm snuggly blanket to wrap him in.  Below are pictures of him and Samantha on the swings.

Slideshow

Below is the youtube link to the slideshow I made for the funeral weekend.  It had music, which was deleted upon upload due to copyright issues.  So, pretend to hear Here Comes the Sun, Somewhere over the Rainbow, and Angel, while you're watching it.  Enjoy!

http://www.youtube.com/watch?v=UMLjl9H_fJ0&feature=youtu.be

Donation Information

We have received many requests regarding donation information.

Below is a link to an online donation form for Children's Healthcare of Atlanta.  Alli received care in the following departments:  Cardiac Services, Palliative Care, Cardiac Intensive Care Unit, Pediatric Intensive Care Unit, and Rehabilitation.  If you wish to direct your contribution to a specific area in the hospital, those were the areas that made the greatest impact on her care, particularly the cardiac units and the palliative care team.

https://giving.choa.org/sslpage.aspx?pid=298

Below is the link to an online donation form for Hospice Atlanta.  We request that if you donate to Hospice Atlanta (Visiting Nurse Health System) that you direct your contribution to the pediatric hospice program.  The pediatric hospice program is funded by donations and ensures that families enrolled in pediatric hospice care do not have to pay for any portion of the services provided that are not covered by private insurance or medicaid.

https://vnhs.thankyou4caring.org/DonateNow

We thank you for your generous support of these organizations that made such a tremendous impact on Alli and our family.

The missing post...

It has been a week since Alli passed away.  In some ways it seems like an eternity and at the same time it feels like it was just yesterday.  So, what happened…

Last Wednesday morning began like many others.  My mom had traveled back to Detroit the day before and we were having a slow start.  Jason left early to drop off his car at the dealership and head downtown for a full day of meetings with a client from out of town.  I quickly got Samantha dressed for school, fed her breakfast, and put her and Josh in the car.  I remember her asking to run upstairs to tell Carol and Alli goodbye before she left for school.  I don't remember if I left her go or not.  Not important.  

After I dropped Samantha off at school I called the pharmacy to have one of Alli's prescriptions refilled.  Then I called Carol to let her know that I had a couple of errands to run, including the trip to the pharmacy, which was about 25 minutes from the house and to call me if she needed me to come home.  She assured me all was well at home and that she was about to give Alli her bath and breathing treatment.  I then proceeded to drop off the dry cleaning and take a box of clothes for Millie to the post office.  As I was leaving the post office I received the call from Carol telling me to come straight home, that Alli was requiring 3L of oxygen.  The drive home, which on a good day is approximately 12 minutes, felt like an eternity.  On my way I called Jason downtown to let him know what was going on and to keep his phone available in case I needed him.  I then called Carol back.  It seemed like forever before I arrived back home.

When I finally arrived back home around 9:30 it was clear that Alli was deteriorating quickly.  I called our hospice nurse who advised me to give Alli a small dose of morphine and that she would be at our house within the hour.  I called Jason back at the office to give him the update and let him know that he should come home.  I climbed in to bed with Alli and held her as we put her bipap mask back on and began the process of turning up the oxygen to try to get her oxygen sats back up.  The chaplain prayed with me and helped me put some of our Lourdes water on Alli's lips.  By the time Jason came home, she was sitting on 5L of oxygen through the back of the bipap.  Eventually we turned it up to 10L - so much oxygen that it was pouring out of the back of the machine.

In the meantime, we called our parents to let them know what was going on and found Samantha a ride home from school.  When it became clear that the oxygen and the bipap wasn't helping, as Alli's sats dropped lower and lower, we made the decision to turn off the bipap machine.  Jason, Joshua, and I sat with Alli until Samantha arrived home from school.  Jason and I each had time holding her.  Once Samantha arrived home I went downstairs to meet her and explain what was going on.  She joined us in Alli's bedroom.  We turned on Alli's mobile, which she often listened to throughout the day, and I read her what had become our favorite book Wherever You Are my love will find you by Nancy Tillman.  After Alli had been quiet for a little while I asked Jason if I could hold her and had him get the stethoscope.  When I put it to her back there was silence.  It was an indescribable feeling.  We laid her on her bed and called the hospice nurse to come back in to her room.  She pronounced her dead at 1:15 pm.

The funeral home came later that evening to meet with us and take Alli in to their care.  They carried her out of our house wrapped in blankets in a Moses basket.  The medical supply company came to pick up her equipment.  The only way I can describe it is like the feeling you have after you take down the set from a play.  Her room looked so bare and the silence was deafening.  I would never hear Samantha say again, "Mommy, can I go peek in?"  That is what she would say every morning and every day after school when she wanted to visit Alli and her nurse.  Alli's room was her refuge during the day.  She would sit and play with the nurse's nook, lay in Alli's bed and look at books and listen to music, help the nurse put lotion on her.  She loved being in that room.

Over the course of the following days we planned and had the mass and burial.  The eulogy I delivered at the mass is included below.  I'll never know how I managed to get through it.  I am the person that can't pull it together at the funeral of a stranger.

And now, after the mass, after the burial, after the visitors have come and gone and our parents have started to go home, I find myself searching for Alli.  When I prepared myself for her death over the course of months leading up to this, I comforted myself knowing that she will be with us no matter what.  But I don't feel her right now and I can't find her.  I know that she is in Heaven, but it is as if she has been pulled aside in to some remote corner.  My hope is that she is cradled somewhere, being comforted, and told what a wonderful job she did.  She endured tremendous suffering.  I know that she will come back to me.  I don't know when that will be, but I find myself yearning for the feeling that she is with me.

Samantha is doing reasonably well.  We had been prepared in advance about what to expect from her - that she wouldn't necessarily experience continuous sadness, but that she would maybe be sad for a time and then ask to go out and play.  So, we meet her where she is at the moment and don't place many expectations or judgments on her.  She told Jason and me that there were angels in the room with us when Alli was dying.  She repeated that to my dad in a separate and independent conversation.  One quick story about her and then I will conclude for now - One of our neighborhood friends came over on Sunday afternoon and told Samantha, "I'm sorry for your loss."  To which Samantha replied, "Alli is not lost.  She was just visiting us on her way to Heaven."

Eulogy:

Trish Phillips writes, “The butterfly symbolizes transformation and joy. Its dance reflects the need for movement from where we are to our next phase of being.  Butterflies appear to dance as they flitter among the flowers. They remind us not to take things so seriously within our lives. They awaken a sense of lightness and joy. They remind us to get up and move, for if you do not move, you cannot dance.”

From the very beginning we strongly aligned Alli’s life with that of a butterfly.  We knew before she was born that she herself would physically endure many transformations, but that there would be great joy interspersed among them, and that once she emerged she would thrive.  Truthfully, or maybe selfishly, we assumed that the butterfly symbolized her existence, without realizing that the true transformation would really occur within us.

While Alli was in utero, we learned that she would likely have down syndrome and that she had a series of complicated heart defects.  We accepted that her life, as well as ours, would take a different course and made preparations for her arrival.  

When Alli arrived on July 1, 2011, we were encouraged by her strength and we ourselves were strengthened by her very presence and grace.  All of my anxiety and fear about what Alli’s future held subsided the first time I held her in my arms after she was born.  Her early weeks of life were strikingly similar to that of the typical newborn.  Full of diaper changes, nursing, tummy time, long naps, play time on her activity mat, and lots of cuddles.  Just holding her in those early days and weeks brought indescribable peace.

Alli’s onset of infantile spasms at around 4 months old set forth a chain of medical events that would profoundly change the course of her life, as well as ours.  From that time forward we found ourselves aggressively trying to chase down cures for one ailment after another, at each step hoping that once we cleared the hurdle in front of us she and we would return to the path on which our journey together had begun.

Many people assisted us in caring for Alli during this time.  She saw a variety of pediatric physicians, nurses, and therapists who shared a common goal of trying to give her the best life possible.  She bravely endured countless surgeries, tests, labs, and treatments in the hopes of curing her ailments.  Her home nurses cared for her as if she was their own child and gave Jason and me the ability to divide our time between each other and each of our children.  They allowed us to have some sense of balance in our life.  Along the way we met new friends and were humbled by their generosity and graciousness.  We had a faithful network of prayer warriors lifting Alli and our family up in constant prayer.  I believe it is their prayer that gave us the strength to face the challenges set before us each day.  They reassured us that Alli was surrounded by angels at all times.  Our co-workers at Deloitte supported us through the coordination and preparation of meals, many of which were home made and hand delivered.  They graciously allowed Jason the flexibility to work from the hospital or home and encouraged him to meet the immediate needs of Alli and our family when necessary. All the while we were supported by our family and friends.  Our parents spent countless days and weeks in our home helping with household chores, running errands, and caring for Samantha and Joshua.  Our siblings and extended family sent constant words of support and expressions of love from a distance.  We had visits from family and friends when we were unable to travel to see them.  When we were able to travel, we took Alli to meet her family and friends in Detroit, Chicago, and Raleigh.  She met nearly every living relative she has and is deeply loved by each of them.  Each of these people has told us that their life, in some way, has been transformed by Alli.  

In the last weeks of Alli’s life we are so grateful that she was able to be home with us.  We enjoyed taking walks with her on nice days, reading to her, Samantha, and Joshua in her bed, sitting with her on our back patio, and including her in family meals and gatherings when she was able.  We tried to make her time at home with us as comfortable for her as possible.

On the day she died, Alli was surrounded by Jason, me, Samantha, and Joshua.  Jason, ever her protector, cradled her in his arms as she took her last breaths.  We know now that she is living a life free from the encumbrance of medical devices and physiological limitations and that she is able to dance freely in the company of her creator and the many loved ones that went before her.  

I leave you this afternoon with the words from Alli’s birth announcement.  “The butterfly is a symbol of change, joy, and transformation...our lives have been forever transformed by the life of Allison Claire Hakerem.”  With love, Jason, Megan, Samantha, and Joshua.

Funeral Arrangements

Saturday, November 9, 2013

Visitation and Funeral Mass at Our Lady of the Assumption Catholic Church

12:00 pm Visitation

1:00 pm  Mass of the Resurrection

Our Lady of the Assumption Catholic Church
1350 Hearst Drive NE
Atlanta, GA  30319

Burial will follow at Arlington Memorial Park
201 Mt. Vernon Hwy NW
Atlanta, GA  30328

Sunday, November 10, 2013

The family will receive visitors in their home after 2:00 pm

Monday, November 11, 2013

The family will receive visitors in their home after 4:00 pm

In lieu of flowers, donations can be made to Children's Healthcare of Atlanta or Hospice Atlanta.  Information will follow regarding how to make donations.

Halloween and All Saints Day

It finally feels like there is a break in the action.  Samantha's birthday plus Halloween in the same week is exhausting.  Since I already wrote about Samantha's birthday, we'll skip to Halloween.

We started with pumpkin carving on Sunday afternoon.  We took Samantha and Josh to the local church parking lot to pick out a pumpkin and then went out for ice cream at the Frosty Caboose (Samantha's favorite!).  We sat out on the back patio with Alli and carved our first family pumpkin.  I would love to say it was something right out of a Norman Rockwell painting, but it was full of me asking Samantha to get off my back as I wielded the butcher knife.  In the end, we were left with this…

Everyone survived and we got a nice family photo out of the deal :)

We had joked about dressing up the entire family for Halloween this year.  We celebrate with wonderful friends who dress up as a family and so we thought maybe we would get in to the fun.  As time went by I figured we had given up on the idea and I let it go.  I'm not a huge fan of Halloween anyway.  But then, on Tuesday, my costume from Jason arrived in the mail.  So, I had no choice but to muster up my accountant level artistic skills to create Jason's costume.  In the end, this is what happened…

Not too shabby…  I didn't think it would be kind to dress up Alli (although I realized later that I had a cookie monster shirt for her), but she did have her own special holiday outfit and I managed to catch her in this moment with Samantha…

Samantha has been spending a lot of time in Alli's room.  I wish I could capture every moment they are together.  Alli's special holiday outfit…

We enjoyed visiting with friends and trick or treating around the block.  Samantha landed a healthy stash of treats to share with the family and now we are on to Thanksgiving!  

For those of you who aren't Catholic, November 1 is All Saints Day.  It is followed on November 2 by All Souls Day.  All Saints Day is the time that we honor and celebrate our Catholic role models.  It is a holy day of obligation and so I went to mass last evening.  One of the rare times I have been able to go to mass on my own.  I arrived early and had some time to clear my thoughts.  I haven't written much about how Alli is doing the past few weeks, as I struggled with how to deliver this message.  She has been resting comfortably at home since her last admission, however, since she has been home, we have started the process of working with hospice.  Alli is in respiratory failure, which will likely be a terminal condition.  Her breathing is currently supported with the bi pap machine at night and during short intervals during the day.  Hospice has been wonderful and I will gladly discuss that process with anyone who wants more information.  The point is that we have come to understand that Alli's life with our family will be shorter than we had hoped and we have had to confront her eventual mortality in a very real way.  So, as this has been going on, I found myself in tears (yet again!) during mass last night.  Not the whole mass.  Just certain parts.  It is so hard sometimes to sit there and sing "Glory to God in the highest" (literally) with all of this going on.  As I sang last night I could feel my very breath being sucked out of my chest.  But, I continue to sing, because in all that we do to care for Alli and each other during this process, we are giving Glory to God.  We may not be singing the words as we go along, but I have to believe that He is pleased with our efforts.  As the priest explained last night, All Saints Day is about ordinary people who lived extraordinary lives.  It isn't limited to just the canonized saints.  We all do extraordinary things during the course of our life that please God.  So we honor and celebrate our role models and endeavor to emulate their extraordinary efforts in some facet of our life.

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!

Gosh, I think the last time I posted Alli was on her way to rehab.  Yikes!  Alli did make it to rehab.  She spent two weeks there.  The first week  Alli still had a lingering fever, so she underwent a battery of tests in addition to her therapies.  The second week was more focused on therapy.  Unfortunately, we were not able to recover her back to the baseline that she was at before she got sick this last time.  

Since she has been home she has had 24 hour nursing care.  We have taken her to a few follow up appointments with the most critical specialists - pulmonology, cardiology, neurology, and she will follow up with endocrinology later this week.  She has had an outpatient assessment in the Scottish Rite feeding clinic and with the physical therapist.  At this point, no one is overly optimistic about her ability to recover from this most recent setback.  She has suffered numerous insults to her brain and lungs.

She is currently on bipap 24 hours a day and will remain this way until we are able to retest her carbon dioxide level - likely on Monday.

On a happier note, Josh has started eating solid food.  So far he has had banana, sweet potato, avocado, mango, pear, and oatmeal.  He loves to eat!  It was as if he was studying the art of eating for the weeks leading up to that first bite off of the spoon.  He took it like a champ.  I am getting back in to the swing of things with my magic bullet and Super Baby Food.  So far the only thing he hasn't appreciated is the texture of the sweet potato so I mixed it with banana and he was good to go.    He is rolling in both directions, sitting with support, and hanging out in his baby einstein activity bouncer.  I swear he started to say mum mum mum the other day, but that could just be wishful thinking.  He definitely babbles a good bit.

Samantha is enjoying school and loves her new teacher, Miss Cara.  On Monday she will start her first gymnastics class at the YMCA by our house.  This will be her first organized activity outside of school.  I am eager to see how she does.  I was hoping to get her in to soccer, but missed the registration deadline.  She continues to keep us in stitches with her dancing and funny one liners.  She is a great big sister and loves to spend time in Alli's room with Alli and the nurse.  The nurses have been wonderful with her.

As some of you know, the weekend after Alli came home, we had Joshua and Alli baptized.  We had the baptism in the chapel at Scottish Rite.  The ceremony was performed by the deacon at my church.  Below are a couple of pictures.  It was such a special day.  I am so happy we were able to pull it off.

Please continue to keep Alli in your prayers and we will continue to keep all of you in ours.

Have a great week!

Just a quick update for tonight - Alli was approved to go to rehab on Friday.  Unfortunately, she spiked a really high fever,  so we stayed put in the ICU over the weekend.  If all goes well, then she should transfer to rehab tomorrow.  Hopefully we will go home from there.

It has been an exciting week in the PICU.  On Monday, Usher's son was admitted down the hall from Alli.  I wish I could say this motivated me to shake out my post-pregnancy best and blow dry my hair every day, but alas, I stuck with my comfy hospital uniform - t-shirt and pants with flip flops.  I did practice in my head what I would say to Usher, should I be lucky enough to meet him in passing in the hall.  Luckily we didn't run in to each other as I couldn't think of anything clever or funny to say and if you can't be funny or clever in those situations then it is just embarrassing, ala my experience meeting Will Ferrell at Carl's Chop House - a story for an entirely separate blog entry.

Samantha has been doing a great job at mass lately.  She has been playing quietly and has started to show interest in various parts of the celebration.  She cares enough to ask me now if she is behaving.  Huge sigh of relief.  Before we leave I always ask her if she has anything she wants to discuss with Jesus before we leave.  Today she asked Him to please help Alli get better so she can come home and be with our family.  Her prayers are so sweet and innocent.  Sometimes we pray for her clock or Louie the rooster (another story for another blog post), but then she comes up with real winners like her heartfelt sentiments today, or when she remembers a person that we have mentioned to her is sick or having a hard time.  She has also become obsessed with saying a daily novena.  Since we finished the novena to St. Joseph, we moved on to a novena to Padre Pio.  She asked if we could learn about some other saints and start a new novena, so I will take her over to the Catholic bookstore one day this week to pick out a new one or maybe two.  We are open to suggestions.  Lately she has taken to turning on her lamp and looking at her books when we put her to bed at night.  Then, when I get home from the hospital, I go in tuck her in and turn off the light. Last week when I went in to her room at the end of the night I found her asleep amidst an array of St. Anthony prayer cards we received from the Franciscan Friars of the Atonement.  She calls them her "prayers from the mail."  It was quite a sight.

It is possible Joshua is teething.  He's drooling like mad and has been a tad bit fussier than normal.  I'm not truly convinced that this is the case, as both Samantha and Alli didn't cut teeth until close to their first year, but I suppose it is possible.  He continues to charm everyone around him regardless.

Ok, I think that is all for now.  Samantha is back in school as of Wednesday.  We'll keep you posted on Alli's progress in rehab.  Have a great week!

What a day!

We had our angels working over time today.  Samantha and I continued our novena to St. Joseph, as promised, and the condo sale was finalized today.  For those of you who might not appreciate the significance of this, since we moved out of the condo in 2011, it has always rented, or in this case, sold, on the exact day we needed it to without having to come out of pocket to pay the mortgage.  Given the economic circumstances, and what we know about other friends who have tried and are trying to sell condos, we feel very fortunate.  Given that we have been down to one income the last few months, we were concerned at the prospect of having to cover the mortgage if it didn't sell in time.  Our tenant moved out on Saturday.  St. Joseph took good care of us.  As any of you who deal with real estate know, things often happen at the last minute before closing.  Our sale was no exception.  There was one last detail that came up this morning that could have caused a delay.  Samantha and I said some extra prayers together when this came up, and everything was able to move forward without incident.  Jason was able to work through things and the deal closed on time.  We are relieved to have this off of our plate.

This morning, in between getting ready for the house to be cleaned, and extra prayers to St. Joseph, we had a play date with my good friend Emily and her two children Drew (3) and Sophie (10 months).  Emily and I went to college together (we actually grew up about 10 miles from each other and knew each other in high school, but didn't become friends until college...I digress) and she lived in Atlanta for a short time, but moved back to Ohio to be closer to her husband's family (novel concept).  At any rate, it was wonderful to see her and so fun to see Drew and Samantha play together.  She also brought some of Drew's hand me downs for Josh.  Since he was born (and even before) we have been the recipient of numerous hand me downs and I wondered if it would be too much, but somehow she brought just what we needed - pajamas and play clothes.  Jason and I had just had a conversation this morning about how Josh has grown out of his 3 months pajamas and I was debating buying him more, since we didn't have many 6 month pajamas.  So, now we're all set!  Many thanks to Emily and everyone else (Mindy, Jenn, Jane, and Corey) who have lovingly and generously sent us clothes.  Josh is very well dressed...and I have to say that every time he puts on one of these outfits it makes me think of the person who sent it and how grateful we are for their friendship :)

Alli should hopefully be transferred over to rehab tomorrow or Wednesday.  We had hoped she would go today, but there were some logistics that had to be worked out with her bi pap machine.  In the end that ended up being a good thing for us as we needed some extra flexibility today.  She continues to get better and stronger every day.  I haven't given as many details about her illness this past time, but it has left some lingering neurological impacts that we are praying will continue to resolve as she recovers.  She turned septic just prior to being admitted to the PICU and was unresponsive for about 24 hours.  When she started to wake up her eyes were deviated upward, she had stiff posturing movements in her arms/legs (we ruled out seizures), and no longer brings her hands to midline.  We are seeing slow improvement in all of this - the posturing has stopped, she is starting to bring her eyes back down to center, and she is starting to show more purposeful movements with her arms.  They also took her cast off since x-ray showed that the bone had healed enough for it to be removed.

So, that is the update from here.  Today is a day where I don't know where I would be without my faith.  Lots of challenges - some of them more significant than others - but we got through each one of them.  I am hopeful that as my children grow up they too will find strength in prayer during times of adversity.  The Lord always has a way of letting me know that He hears me and I hope my children know that He hears them too.

I apologize for the delay in posts.  It has been quite busy.  Alli is still in the hospital.  We had hoped it would be just a short stay, but her condition became more complicated the day after she was admitted and she needed to be transferred to the PICU at Scottish Rite.  She has been on and off of bi pap during her stay and we are trying to get her ready to go back to inpatient rehab.  As a result of her illness, she has lost much of the progress that was made during her original stay in rehab.  So, we're hoping to touch down there before we go home so that we can jumpstart her rehab process.  She has had an eeg during her stay. It is still abnormal, but shows no hypsarrhythmia, so she is tolerating the wean off of one of her seizure medications.  That is great!  We will still maintain the other two medications for now, since the abnormal eeg indicates that she is still at risk for seizures.  However, the fact that we aren't seeing seizures means that the medication is doing its job.  Thank God!

I was able to take a quick (24-hour) trip back to Michigan for my sister's wedding.  Jason's parents had made plans to visit us, as well as Jenn, Michael, and Brayden, over that weekend, so I left Jason and Samantha in good hands.  Josh did great on the trip and enjoyed meeting our Michigan family and friends.  I was just happy to be able to be a part of Carrie and Luke's special day.  Samantha got along famously with Brayden and enjoyed being spoiled by her grandparents and aunt and uncle.  Jason's parents have been a tremendous help to us the last few days.  Their timing was perfect.  Although they had hoped to catch Alli while she was at home, they have spent a lot of time bonding with Samantha and Josh while Jason and I alternate shifts at the hospital.  We very much appreciate everything they have done for us since they have been here.

So, now we are in back to school mode.  Samantha will meet her teacher, Ms. Cara, next week.  Then she starts back the following Wednesday.  I am happy to have a routine back in place for her.  Our nanny, Megan, has taken a job as a pre-school assistant at the Morningside Day Out.  We are sure they will love her there just as much as we have loved having her with us!  She will continue to work for us as we need extra hands, as will Nicole.  Nicole started with us earlier this summer to give Megan a chance to look for a new job.  The kids love both of them, which is great!

Our condo is under contract and scheduled to close on Monday, August 5.  Please continue to pray that all goes well as we complete that transition (and transaction).  So many memories there - from our engagement to starting our family.  It was such a great little place.  I wish it had been bigger so we could have lived there longer!  It is the first of many steps in simplifying our life.  Given how unpredictable Alli's care can be, we are trying to simplify things as much as possible.

We hope everyone is enjoying the rest of their summer!  We'll try to send more regular updates.  Please know how much we appreciate your prayers and offers of help.  We will especially need the extra prayers as we head in to respiratory season.  We had hoped to get Alli through the summer without complication and this hospitalization will make for a very challenging fall and winter given the time it has taken away from the healing process her lungs very much need.

annnnnnnd....we're back...

in the hospital.  Alli officially made it home for a week.  And what a busy week it was!  Full of therapy evaluations, doctor appointments, and just enough time to catch a cold.

Her schedule looked something like this:

6:00 am - meds

8:00 am - meds and respiratory treatment

10:00 am  - meds

12:00 pm - meds

2:00 pm - meds and respiratory treatment

6:00 pm - meds

8:00 pm - meds and respiratory treatment

10:00 pm - meds

12:00 am - meds

Mixed in to that were her doctor appointments and outpatient therapy evaluations, time to do PT, OT, and pleasure feeding at home, nursing Joshua, unpacking from the hospital, grocery shopping...yikes!  Hardly a moment to sit down.  We are looking forward to getting our home nursing in place once we are done with this hospital visit, as the current schedule leaves very little time for Josh and SJ.  We did have a couple of nice nights with some family time after dinner.  I think that was my favorite part of the whole week.  We had all 5 of us in the living room.  Jason was snuggled up with Samantha watching Curious George.  Alli and I were down on the floor working on some of her exercises and Josh was next to us building some core strength in tummy time.  We are looking forward to more of that.

We met with the pulmonolgist this week.  We have a new one.  She is wonderful and had some great tips for us.  We have seen her a few times in the hospital and she has always taken great care of Alli...and let's face it...she takes good care of mom too.  We have been struggling to keep a couple of Alli's meds down and she had a tip for us that has been successful for several days in a row.  Huge relief!

We also met with our ENT.  We love her too.  She is full of personality and knows her stuff.  Alli will likely need ear tubes at some point, but given her sedation/anesthesia history, no one is in a big rush to put her under.  At some point we will have to break down and do it, as she has fluid built up behind at least one of her ears.  We will have a sedated hearing test at the same time.  It seems she has hearing loss in her left ear and they are not able to conclude on the right ear.

Currently Alli is in the hospital, not in icu (thankfully!), with a cold of some sort.  We were managing well at home, with the exception of her being able to cough up what is sitting in her lungs.  So, we are here for the respiratory therapy - deep suction and round the clock breathing and vest treatments.  Our goal is to avoid the ICU and make this a short stay.  We'll hopefully just need to get her over a hurdle and be on our way back home.  Please say some prayers that this is resolved quickly and without incident for her.

We had another offer on our condo this past week.  This one seems more promising than the last.  Samantha and I have been saying the novena to St. Joseph and will continue to do so, until the paperwork is finalized.  It will be a relief to not have that hanging over our heads any more.

That is the update on our end.  We said goodbye to Grandpa John this past week.  He was so wonderful to have around.  Eager to help in any way we needed (and in some ways we didn't know we needed) and always so flexible.  We hope he (and nanny) come back soon!

Alli is Coming Home!

After 4 long months, Alli is coming home on Friday!  We are excited to have our family back together under one roof and anxious to re-learn our new normal.  She has made great progress in rehab and we are eager to see how things evolve for her on an outpatient basis.

Thank you for all of the prayers and support!

Birthday Gifts

Birthdays have always been big celebrations in my family. That doesn't mean they were always an extravagant affair, but they were always celebrated with family and friends. There was always cake and ice cream and plenty of special packages on that day. I am ashamed to admit that it was only in my more recent adulthood that I got over the whole 'special package' phenomenon. Who doesn't like a little birthday surprise? I still like it, I just don't place as much importance on it as I once did.

The attached photo is from Alli's birthday last year. What a celebration! As I prepared to celebrate Alli's birthday this year it started to occur to me that while we will have gifts for her today, she has given us (me, Jason, Samantha, Joshua, and everyone that knows, loves, cares, and prays for her) invaluable gifts over the course of her short life that could never be wrapped in a box with a fancy bow. They are wrapped in her very being. Her humble and often quiet suffering has taught us the following lessons...

1. We never give up on life. We were excited when we found out we were pregnant with Alli and no matter what challenge has been laid before us, medical or otherwise, we have always tried to act in a way that dignifies her life.

2. God is listening and does answer our and your prayers. There are days when we should be exhausted, frustrated, and ready to give up. It is on those days when your prayers sustain us and give us the strength, determination, and focus to keep moving forward. Alli's very life is a manifestation of prayer.

3. Humility. Alli's condition(s) have brought us in to a circle of life in which we can be nothing but humbled by the challenges and strength of the other children and families around us. There are plenty of days that we could sit and wallow in pity for her, however, on those days we look for everything about her that we have to celebrate....that she is getting stronger, that she is responding to therapy, that she is staring to become aware of her surroundings and her family, that her health is improving, that she is breathing without assistance. These are tremendous achievements for her.

4. Compassion. There are stories in the ICUs and rehab that would rip your heart right out of your chest.

5. Our hearts are forever changed by Alli. Jason is the greatest manifestation of this. He is a man that has always enjoyed and performed well in his work. He was eager to meet the needs of his clients and the firm. Always quick to pack up his computer and get off to the next meeting. While he remains focused and committed to that work, it is touching to see him pack up a little more slowly, linger at Alli's bedside, and be happy surrounded by his family - even if it is only for a short while each day.

I am sure there are many more gifts that I could and may add to this, but the bottom line is that the gifts she has given us these two short years pale in in comparison to any gift we could give her. I am certain that she is saving our very souls and keeps us focused on what is truly important in life.

So, happy birthday, Alli! I am so grateful for and humbled by your life and the lessons you impart on me every single day. I love you, sweet girl.