Sunday, July 13, 2014

Therapy Overload

Being proactive, we called Early Intervention before Josiah was born.  We called again about one week after his birth.  He was six weeks old when the assessment took place.  Starting at six weeks, he was seen weekly by the case manager, physical therapist, and occupational therapist.  Three appointments per week, for the first year-and-a-half.  Then speech was added.  Four therapy appointments per week, at home.

Shortly before his second birthday, the occupational therapist moved and we had an issue with the speech therapist.  Knowing he had one year left with EI, and then would age out, we switched occupational therapy & speech therapy to an outside agency where he would receive both services twice weekly.  Two appointments at home, four appointments outside the home.  Of course, playgroup was additional.  These didn't account for 'extras' - trips to Children's, the DS clinic, pediatrician, or dentist.

Given the last three months (with C being ill), this Mama is finding herself on therapy overload.  C used to take Josiah to his outside appointments (two days per week - two therapies back-to-back).  I would attend to grocery shopping and the like.  All of that has changed as C can no longer lift Josiah.

Thankfully, C drives the two 'big' boys to/from preschool/camp each day, while I stay at home preparing Josiah for his day.

Some mornings roll around and I think to myself, "I just can't do this today."  Yes, I have cancelled therapy due to my own inability to carry on.  It doesn't happen often, but happens more than I like to admit.  I week, I simply decided to take the week off.

Josiah is such a little trouper as I carry him from appointment to appointment.  He arrives with a smile, every time.  He works hard at everything he does.  I sit, exhausted, watching him.

He ages out of EI in 3 months.  That will end the home visits.  Physical therapy will get added to our list of outside appointments - six therapy sessions per week.  He will receive some services at school.  We will continue to take him to playgroups, when scheduling allows.

Sometimes, I am tired just thinking about our schedule.  I feel like we're on therapy overload.  I wonder if other parents feel that way too..... 

Friday, July 11, 2014

Change is in the Air

Kids grow so fast.  Josiah will be three in October.  That means he ages out of Early Intervention (EI).  His services (physical therapy) will be switched to the rehabilitation center where he received OT (occupational therapy) and Speech.  EI will also prepare Josiah for transition to the public preschool in town. 

We were determined to send Josiah to the same preschool that his brothers attended.  EI (early intervention) assumed the path of the public preschool.  After all, Josiah has Down syndrome and is granted an automatic spot in their program.  We didn't know a lot about the program but we initially railed against it.  It wasn't personal.  I guess we didn't like the idea of something being presumed for our son.  We didn't like the idea that he would be 'singled out' because he has an extra chromosome.  His big brothers didn't go there; why should he?

Acting on intelligence, and not simply emotion, C & I decided to take a tour of the public preschool classroom.  We were so glad we did that!!!  We brought an entourage with us that day.  C & I had Josiah as well as my best friend (who is a preschool teacher at another location).  The EI worker met us there, as well.  The assistant principle was taken aback by the amount of people with us.  The fact that we brought Josiah (something they encouraged me not to do) also may have thrown her.  However, if he was to attend there - we needed to see how he would react to the environment.

We were accompanied to the preschool classroom and asked to sit against the wall to 'observe.'  After about ten minutes, Josiah couldn't contain himself any longer.  He wanted down.  He wanted to play.  The lead teacher graciously allowed him to join a small group of children who were playing with blocks.  He sat in the group, like a pro.  He stacked blocks, was mindful of other children, and even used a few signs to communicate his wants and needs.  He fit in just fine.

We watched small groups of children move from 'station' to 'station,' always with a teacher.  The classroom was organized; Teachers were amazing.  We sat stunned.  Suddenly, our feelings about preschool changed.  There are only 10-12 children per classroom in this public, integrated, preschool.  We couldn't tell the 'peer children' from their counterparts.  

We walked out of the school with the realization that what we 'plan' isn't always the best plan.  This preschool program quickly proved to be the best option for Josiah.  When you are able, and willing, to be open to possibility - God shows you the best path to take.  He certainly had His hand in this one!

The teachers have since been to the house, to observe Josiah in his natural environment.  We learned that the teacher has two deaf children, of her own.  She is fluent in sign language and knew every sign Josiah used to communicate with her, even his approximations.  We were thrilled!!  Josiah took a liking to his new friends.

When the school year resumes in September, the IEP meeting will be scheduled.  Josiah will attend preschool Monday-Thursday, two-and-a-half hours per day.  A bus will pick him up at home, and return him after school.  He will receive some services at school, in addition to those he receives at rehab.  

I am nervous about sending him 'out' in the big world but have faith that he will grow and learn.  I know it will be good for him.

C & I will suddenly find ourselves with 3 hours per day where we are kid-free.  That will be a new experience for us.

In the meanwhile, we will spend our summer experiencing life with our children.  We will excitedly prepare for what's to come.  We will continue to be grateful for the many blessings in our life.

Tuesday, July 8, 2014

Though I Walk Thru the Valley....

The realization that I have not written in four months hit home tonight.  I apologize to my readers for taking such a long hiatus.  My friend Kel refers to this blog as her "Sunday Paper."  Although I provided her with a phone update, I'm surprised she hasn't fired me yet :)

My last blog entry was dated March 2nd.  My husband C was weeks away from a planned surgery.  Before I explain recent events, let me start at the beginning.

Almost ten years ago (before we were married), C had symptoms that would alarm anyone.  After suffering with the symptoms for almost 7 hours, I woke up and received a message (from him) that something was clearly wrong.  I drove to his location and convinced him that medical attention was necessary.  A couple of hours later, we were sitting in a local emergency room.  Once we entered the e.r., C began undergoing tests and examinations.  Soon after, the same alarming symptoms reappeared; They were clear indications of internal bleeding.  I contacted his family, and I waited for their arrival.  C was transferred upstairs (to ICU) for further testing.  His family and I waited patiently.  When a code blue was called, we couldn't imagine that it was him.  Our worst fears quickly became a reality.  C had coded during the test.  He was dying.  Emergency surgery was his only hope.  This was at approximately 2pm.  Family signed consents.  We waited.  Around 11pm, we received word that the surgery was over & C was in recovery.  We were allowed to see him at 12:30am.  The visit was brief.  

Over the course of the next week, I held vigil by his bedside.  It was a long and arduous recovery that lasted about four months.  Feelings I had had for C prior to this emergency had only grown.  I had faced the possibility of losing him but was given another chance.  It was (probably) then that I knew we belonged together.

Life continued as it does.  We moved in together, got married, and started our family.  As time ticked on, we moved past the fear of the early medical scares.  

Two-and-a-half years ago, we were awaiting the arrival of Josiah.  I was eight months pregnant.  My brother S died suddenly.  Two weeks later, C woke up with the same symptoms that alarmed me years earlier.  This time, we wasted no time.  911 was called.  C was taken out of the house in an ambulance.  The big boys (ages 4 and 2) were in the house.  I sat on the steps (very pregnant) and watched them drive C away.  My Mom came to watch the boys and I raced to the hospital.  C was released two days later.  24 hours after his release, the same symptoms reappeared.  Again, 911 was called.  C was rushed out by ambulance.  My Mom raced to the house.  I wasn't sure how much more I could bear, but proceeded to the hospital.  Ultimately, C was transferred to the hospital in the city (via the med flight team); I followed behind in the car.  It was about 1pm.  At 10pm, the surgeon decided that another surgery was needed.  It was an intense surgery, but C made it home in about a week.  Josiah was born one week later.

Though C hasn't been well and continued to struggle with the underlying cause (ulcers), time began to diminish the fear.  In January, we discovered that the ulcers were aggressive and posed another life-threatening medical crisis.  After much consideration, the doctors suggested a planned surgery in an effort to avoid another emergency.

On March 29th, C went in for a planned surgery (to remove his stomach).  Surgery went well (only lasting about 4 hours).  C was looking good.  On day four of recovery, C developed pneumonia.  He was transferred to the ICU and placed on life support.  Time continued as it always does.  My friend C helped me in every way humanly possible.  She drove kids to school, helped with Josiah, picked kids up for school, took the kids to give me a break, drove me to see C, let me cry on her shoulder, was a sounding board, and (some days) was my rock, my inspiration and my strength.

As time ticked on, I feared the outcome.  By day five (on life support), I wondered what the immediate future held for our family.  I wondered if tragedy was about to commence.  I cannot truly explain, in words, the thoughts, feelings, and emotions that I encountered during those trying days.  C ultimately was removed from life support.  He was sent to a rehabilitation facility (due to the inability to walk).  When all was said and done, C was gone for one month.  He returned home on April 30th.

His return home has been a joyous one.  However, this 'recovery' is proving not to be so much a 'recovery' as it is a 'change in lifestyle' (eating, etc).  C cannot lift anything over five pounds, for at least one year.  He cannot eat more than an ounce or two at a time, but must eat often.  He's in pain often.  It is not always easy.

It has truly taken this long for me to start to feel comfortable again.

I am grateful to have my husband home.  I also fear what lies ahead.  Though an optimist at heart, I pray we have no more medical crisis adventures waiting for us.