Our week ahead

We've got a lot going on this week.  Check out this post from the Team Brinkley site for details:  


Team Brinkley: The week ahead

Never Once

Have you ever heard a song for the hundredth time and for some reason it just strikes you differently this time?  Yeah, me too (at least I hope I'm not the only one)!  Monday I was driving the boys to a doctors appointment and a song came on the radio that we have sung in church quite a few times.  I've even heard it on the radio a lot, but for some reason it just resonated with me in a new way.  Here it is:

Standing on this mountain top
Looking just how far we've come
Knowing that for every step 
You were with us
Kneeling on this battleground
Seeing just how much You've done

Knowing every victory
Was Your power in us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful

Standing on this mountain top
Looking just how far we've come
Knowing that for every step
You were with us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
Every step we are breathing in Your grace
Evermore we'll be breathing out Your praise
You are faithful, God, You are faithful
It's true, You are faithful, God You are faithful

Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone

We know, You are faithful, God, You are faithful 

This song was published in 2011, but it seems like the songwriter has been walking through the last two years of my life with me.  With all of the uncertainty of this period, one thing was certain.  We NEVER walked alone.  At times we weren't even doing the walking, we were being carried.  

We were never promised an easy road, but we were promised to have a hand to hold (or to carry us as the case may be) along the way.   The Lord has proven himself faithful over and over again in my life and our journey with Brinkley's health has been no exception. How blessed I am to serve a faithful Father.  The story has not always played out the way that I may have chosen, but it has played out in such a way that all glory and honor are His; as it should be.

I am standing on His promise of faithfulness as we have hit a road block this week. Currently we are waiting out the healing process with Brinkley's g tube.   This is a very minor issue, but it is causing Brinkley a lot of pain and stress, which in turn causes this mommy stress.  After removing his tube last week, the site is not healing properly on its own and is going to require our surgeon to intervene.  Brinkley will be having a minor surgery for the repair.  This would typically be an outpatient procedure, but due to his history he will stay overnight for observation.  

The stressful part is that our surgeon is currently away. He will not be back and in the OR until June 23rd.  Brinkley is on his schedule for that day.  We have a wonderful surgeon and would feel more comfortable waiting for him to do the surgery rather than one of his partners, if we can hold out.  Please pray that we can keep Brinkley comfortable while we wait and that I will have the wisdom to know if the time comes for another doctor to intervene.

We know that we are not alone in this and that the Lord will hold us in His perfect peace while we wait.  

And the verdict is...

The boys made the long anticipated visit to Dr Markowitz this morning.  He agreed that Reese's symptoms could go along with Celiac's Disease and sent us for lab work.  We should have that back in a week or two and will make a plan then.  As frustrating as specialty diets can be, it would be a blessing to have an answer for all of the issues that we have been having with Reese.  A plan (no matter how frustrating) is better than no plan.  For the first two years of life Reese was on a milk free diet, so these things are no stranger to us and we can make it work.

As for Brinkley, I was quite impressed to see that he was 18 pounds and 5 1/4 ounces.  Dr Markowitz was pleased with his weight gain (finally!) and said that he is approaching the 10th percentile on the Down Syndrome chart.  WOW!  Who would have ever thought that would be music to a mom's ears.  This little guy has struggled to get to the 1st and 2nd percentiles.  

I was proud to tell Dr Markowitz that Brinkley has been eating well.  Yes, he has even been spoon feeding!  There were no signs of re flux after a few months of no meds and the new formula that he is on has done away with the stomach upset we had been seeing.

   
Next came the million dollar question.... When can the tube come out?  To my surprise the answer was, "now"!  Not as in, "call Dr Gates and make an appointment for him to remove it", but as in "take it out at home, cover it with gauze for a couple of days."  He said that it will leak for 24 -48 hours then all should be well.  If it has not closed completely or is still leaking then we'll call Dr Gates, our peds surgeon, to have him stitch it up.  

As a precaution I have put in a call to Dr Gates office.  His nurse Kim is incredibly helpful and will give me the pep talk I need to feel confident in handling this myself.  

On top of that, Dr Markowitz said that there is not really any reason that he needs to see us again.  What?  Did I hear that correctly?  Is a doctor releasing us from care?  Am I really only getting good news from this visit?

I have to admit that when he offered us an appointment in six months I couldn't turn it down.  Since Brinkley is just starting to eat solids I would like to be on the patient list in case we run in to any allergy issues.  So, this proved to be a great visit!  Thanks for praying for us!  Aside from his pacemaker, Brinkley will no longer be considered medically complex now!  How's that for making progress?!

Being Hopeful

The craziness of the end of school has taken over at our house.  We have been so busy with all of the things that come with this time of year.  We're still here and doing pretty well.  Brinkley had a recent short hospital stay due to Rhinovirus (common cold), but otherwise we are continuing to feel more like a typical family everyday.  I am very hopeful that this week we are moving one step even closer to being non medically complex.  

Tuesday both of my boys will be seeing the Gastroenterologist (GI).  We are hoping to have Reese tested for Celiac's Disease as it could possibly be an underlying cause of several issues that he has had.  As for Brinkley, this is his regular check up.  My hope and prayer is that Dr Markowitz will agree that it is time to remove his G-tube.    Over the last few months we have seen his surgeon, dietitian, cardiologist, ENT, and endocrinologist and all agree that they are fine with the tube being removed as we no longer need it and we have not used it in 10 months.  The GI has to give the final decision, but I am hoping that the opinion of the other doctors will help him with the decision.  

Please join us in praying that he will agree if the time is right!  Stay tuned as Brinkley has had quite the social life lately and I plenty to share.