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Archive for April, 2009

Prior to Simon being discharged from the hospital in November, we set up therapy with Stride Learning Center.  We had a few individuals come out for the initial paperwork and off-site evaluation.  As parents, we were able to mark that requirement off our to do list before home-coming.  Once Simon was discharged, we were ready and able to start therapy almost immediately.

Our team of therapists includes physical therapist, Jennifer; speech language therapist, Megan and our Family Service Coordinator, Sunny.  We’ve worked with each person separately and together since November.  Out of the team, we see Jennifer weekly, Megan monthly and Sunny either as we call and need her assistance or as she’s able to come out with one of the other therapists.

These individuals have been a great asset to Simon’s progress and development to date.  Their knowledge on basic functions and development has offered many insights into problems with Simon.  They have also become our team to rely on when issues arise that we don’t possess the knowledge to change and correct on our own.  This is the case with our feeding difficulties that have developed suddenly.

In addition to the three individuals currently on our team of therapists, we will also be adding an occupational therapist to our team.  Our family service coordinator will be presenting Simon’s case to the full staff tomorrow and an OT will be added to his team to assist with sensory issues pertaining to Simon’s eating challenges.

The benefit to a full team is their ability to work together and individually to ensure that not only Simon’s needs are met, but the family as a whole is cared for and understands all aspects of the dynamics involved.  It’s within talking to each person and the team we are able to have the greatest therapeutic moments within Simon’s care.

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That’s what doc calls Simon.  It always elicits a smile during our extended, sometimes seemingly never-ending appointments.

Today was Simon’s nine-month check-up.  His stats are great!

  • Weight 17 pounds, 2 ounces (5% for 9 months)
  • Length 26 inches (3% for 9 months)
  • Head 44 cm (almost 10% for 9 months)

The kid has a big head.  We’ll take it!

On the agenda for today’s appointment:

  • Feeding issues
  • Constipation
  • Muscle Weaknesses
  • Developmental issues

We were given great commendations for continuing to persevere through Simon’s feeding difficulties.  Even with his oral aversions, he’s continued to take in enough calories to continue to gain weight.  Simon officially hit the charts at this appointment.  There’s major celebrations to be had for that accomplishment in his life.

We have been referred to The Children’s Hospital in Aurora, CO.  I’ve called and we have about a two week wait before we’ll even get an appointment.  They will go through all aspects of Simon’s eating challenges and developmental issues associated and work out a plan of action while we are there.  The typical appointment actually consists of many appointments during the course of a week.  It’s very in depth, hopefully giving us the opportunity to keep Simon from needing a feeding tube, though it was discussed today.

Along with challenges in feeding, Simon has had some severe constipation as his fluid levels are below normal.  We’ve been given a medication to help with that issue.  It will take some trial and error to find the right dosage for him.  We were also gives prescriptions for prevacid, zantac and hydrocortizone cream.  The first two are for his reflux and the second is aimed to help his skin heal where the tender grips (sticky tabs) go on his face to hold his cannula.

As part of the appointment series at TCH, Simon’s muscle weakness and developmental regression will be evaluated.  There is also a physician that travels to Cheyenne from the Denver area that we will be given the opportunity to see in correlation.  Until that time, we progress as we have and continue to do all his exercises to his limits.

That’s all for now.  Until next time!

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Eating is a necessity.  From the moment of birth, an innate sense told us we were hungry.  Learning how to communicate that need was simple for most.  Crying in the purest of forms, each with a unique sound, signals caregivers that something is wrong or a baby just needs a bit of tender loving care.  For Simon, communicating through cries seldom occurs.  Instead, we have to physically watch his actions or listen through babbling to find the desired action.

Spending 115 days in the Neonatal Intensive Care Unit (NICU) changed what would be viewed as normal responses into something a bit different.  From the time Simon was discharged, he would fuss quietly when he was hungry, seldom extending into a full cry.  As he aged, that fussing became hand-gestures and playing with his nasal cannula.  As Simon has begun exploring verbal communications, we’ve watched as his choice of expressing hunger change again.

No matter the means in which Simon tells us he’s hungry, the response is the same.  Quickly we prepare a bottle and offer the meal up.  Simon’s reactions vary greatly when time comes to actually ingest the meal.  We’ve experienced fabulous and wonderful feeding times where he quickly takes the nipple and suckles.  Much more frequently, however, it’s been a battle to ensure Simon is maintaining enough fluid to stay hydrated, calories to maintain weight and keeping his food down.  Vomiting only adds to the challenges we face with Simon’s desire to eat.

Early mornings are generally our best feeding times.  Upon awaking, Simon will quickly engage in eating.  His mouth is open wide, suckling the nipple comes with little effort and about 90% of the time, he will finish his full meal and move forward.  The remaining 10% of the time, we are met with resistance.  Simon will scream once the bottle comes near his mouth, rapidly move his head from side to side and purse his lips closed tightly.  When we hit moments like this, we will put the bottle down and give him a few minutes and try again.  This method seldom works, but when it does, he’s more than willing to eat his meal.  When Simon continues to fight the feeding, ingenuity comes into play.  Sometimes talking about food or pretending to drink from the bottle will elicit a smile or laugh and Simon will begin to eat.  If the typical games don’t work, I end up pacing the floor with Simon in one arm, bouncing him and offer the bottle with the other hand.  More often than not he will begin eating, though only one or two ounces will be consumed.

Days that begin with feeding issues always weigh heavily on my mind.  I will track how many ounces Simon takes diligently.  Knowing that it’s vital he consume so much in a day for survival.  One day with a lower-than-normal intake isn’t much of an issue, but when the days stack and quickly turn into the majority of the week, we begin looking at what other options would be available for Simon.  Those options are far from ideal, in our perspective, but we will continue to investigate if it ensures that Simon will not fail to thrive.

Failure to Thrive (FTT) is a general diagnosis that has many possible causes.  One of those causes is feeding issues.  We’ve avoided this diagnosis thus far, but we are at the brink of this being added to the collectives in Simon’s medical record.

Medication has not been able to keep Simon’s reflux under control nor has simply thickening his feedings.  On average, Simon will vomit 5 times per week, bringing up his entire feeding.  Once he’s begun vomiting, getting him back to being comfortable with eating takes a full day or more.  Along with his comfort levels, Simon’s oxygen requirements increase too.

I don’t have a medical degree, but I can watch Simon turn cyanotic or blue in color each time he vomits.  Once his oxygen requirements go up, it takes days to wean back down.  We feel quite lucky that Simon is currently sitting on 1/8 L of oxygen given the happenings of recent weeks.  There was a short while where he was down to 1/32 L, inches from being fully weaned off oxygen.

Where are Simon’s feedings headed?  We aren’t entirely sure.  I’ve done a great deal of research on surgical procedures aimed to help, though.  We want to give Simon the best possible chance down the road and if that means we use a feeding tube (G-Tube) on days where the struggle is so severe, we will.  We have watched as Simon has regressed in some areas of development already.  He can’t afford to regress even more.

Until our next update:

  • Live Well
  • Love Much
  • Laugh

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It’s become more of a challenge to spend larger amounts of time typing away. Life and Simon’s life have become a bit more difficult than before.

Simon is 9 months old tomorrow. He’ll see the pediatrician on Wednesday. We are:

Coping with projectile vomiting
Fighting during 99% of his feeds
Struggling with movement and activities

The combination equates to my wearing what he’s eaten more often than not and more time bouncing/rocking than one could imagine. These few moments here are spent as Simon is bouncing in a chair, fussing.

We aren’t sure where his feeding is headed, but I am sure we’ll be discussing a Nissen and possible g-tube at his appointment. Simon is suffering more as the days go by.

I’ll update again soon!!

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