Savanna is 53 days post op from a TPO resection.

Many people have commented on how well they think Savanna is doing, and how whenever they see her she looks so good, happy, and healthy.  They are right.  As her primary caregiver, I have different perception of the situation.  Each day she experiences a sinusoidal track of mood and behavior.  But this is not your normal roller coaster of emotions.  As a result, our house has become a compound for Savanna.  Not just a home base, but a safe zone where I am comfortable at all levels.  Rebecca feels differently I am sure, as she is such a free spirit even after all we have been through with Savanna.

I am a planner at heart.  I thrive on knowing the what, where, when, and who about every outing.  Free spirited, unplanned activities outside the compound are few and far between for me when Savanna is in tow.  Instead, each day is backwardly planned, managed for maximum pleasantness for Savanna when we leave the compound for a scheduled outing.  Some would say this is a character flaw on my part.  At some level I agree, and am trying to live more freely now that her seizures seem to be controlled.  That doesn’t stop the overwhelming desire to make sure I have Diastat®, Ativan®, water, syringes, extra clothes, extra food, extension sets, sensory toys, etc, etc, etc.  I pack light (relative to previous years), but I pack strategic items only with survival in mind if faced with a crisis with Savanna.

Even something as simple as a play-date with the mom’s group in our neighborhood is carefully managed.  I can ill-afford to have Savanna in complete breakdown mode when we leave the compound.  Austin is too mobile and vulnerable to a big fall on most of the playgrounds we attend.  And, trying to hold Savanna when she is having a bad day is like trying to hold a 26lb mealworm on steroids.  (For those of you fish, you get the idea.)  And, even if it is ‘just a play date’, it is the summit of my day.  It is a personal goal just to be able to attend, aside from my daily goals for Savanna’s progress.  Once upon a time, I like to think I had significant impacts on not only companies I worked for, but their customers.  It seemed very important at that time.  Now, my primary job is to keep Savanna alive and make sure she can thrive.  The contrast from then to now in my daily activity is stark.  There was a time for me though, like many reading this, I took my kids for granted.  Work was the most important daily task due to not only the sense of loyalty to the company and those I worked with, but also our family’s financial well being.  My, what I have learned in my 40 years on this planet.  Work is still important.  As all parents of special needs kids know, having access to good health insurance is key in surviving.  But the roles in our family have become more defined as the dependence on others to raise our kids has lessened substantially.   It has been a difficult adjustment, and still a point of contention at times in our house.

Rebecca has been travelling almost every week in May and it has been a quite an adjustment.  I have had to step back at times and make decisions about what has to get done during the day.  Some days, the list is very fluid as Savanna is on a new path now and needs a new diet of sensory input.  Learning how to feed her this input so she can thrive takes time, some days more than others.  I am hoping some of the unhappiness is her expressing herself and needing additional and different kinds of input.  The sensory swing I built many months ago has finally emerged as a worthy project.  She can be completely inconsolable by any means and you put her in that swing and give her a big push and she stops crying and starts laughing.   In many ways, we are starting over with her from a parenting standpoint.

I must give a shout out too, to Tristan, our 5 year old.  He has been a great helper and guardian of Savanna when I am not looking.  Brandon helps too, but he is 3 and his level of awareness is on and off, depending on what mischief he is currently undertaking.  And, these 4 kiddos have really become closer in the last few weeks.  I have tried to make it a point to do something with each one of them every day, though I spend a lot of time working with Savanna.

Savanna has a lot of therapy in the compound too, and those days too are carefully managed the same manner.  This allows maximum benefit from the therapy.  If Savanna is really upset or asleep, it can nullify the therapy visit.  When the therapist is an hour late, it can really void the effort as an hour awake for Savanna is a long time.  I have come to realize right now that her wake cycle is about 4 hours.  The first hour now she seems happy, and it goes downhill from there.  The kind of input she receives makes a difference and I am learning how to help her help herself.

When I have to leave for an extended period of time, I take the nebulizer in the car and run it while on our way to wherever we are going.  If she is sleeping it is easy.  If not, I probably look like a drunk driver.  The extra inhaled steroids and ipratropium bromide really help with her stridor and wheezing and general upper airway congestion.   There is something still going on in her throat.  I am not sure, nor is the ENT.  Savanna has stopped eating again almost entirely.  The past 7 days, I managed only about 1 container of yogurt, and 1 container of baby food – that is it.  So, she back on tube feeding which is really demoralizing.  No one is really helping us with this situation, so I feel like I am on my own in figuring out what to do.  She will put anything in her mouth and chew it, but won’t swallow it for nothing.

I have noticed now too that she is spitting up randomly throughout the day and smells like vomit a lot.  She sometimes stops playing and starts to make that sound like she is going to vomit, but doesn’t.  Not sure what to think.  Doctors don’t think she is ‘hydro’ as they call it, short for developing hydrocephalus.   But, as a parent, I just think something is not quite right with her, pardon the pun.  I started her on Zantac to see it helps with the reflux.

In reflection, I have looked at my time spent with the kids lately and realize it is about a 50-50 split.  50% with Savanna and 50% with the other three total.  Unfair for the older ones, but I sure hope one day they understand and can forgive me.

I couldn’t get this posted in time for Mother’s Day, but for the mom’s out there this is for you.  You can tell something is bothering her, but it is indeed a great little clip.

For Savanna right now, everyday is climb.  It is a challenge.  God is showing us the way, one day at a time knowing we can’t handle much more than that.

Take care,

Ken