What a Difference a Day Makes

"So do not worry about tomorrow; for tomorrow will care for itself.  Each day has enough trouble of its own."  - Matthew 6:34

I am so thrilled to share the news of this incredible day!  I can't believe how much has changed in less than 24 hours.

Yesterday, our friend and advocate, Dr. K. stopped in to tell me that we had a place with Ronald McDonald House starting Monday.  It seems that started a chain of events that has kept my head spinning today.  Following that big news, our case manager came to ask if we were ready to move Haven out of inpatient therapy to outpatient therapy if that meant her going with a feeding tube.  That was one of my fussy moments yesterday.  I tried to explain our frustration with the feeding tube, our determination to see it come out as soon as possible, and our wish to leave inpatient therapy without it.  Sounds redundant, but those where three completely separate events--and were the issues on my mind as I fell asleep.

This entire day has been a whirlwind.  I awoke around 7:30 to start our day.  As I was in the bathroom getting ready I heard Haven scream in her bed.  There were two doctors in her room checking her out at the same time.  Those checkups took a little longer than expected, so we were not quite ready when the speech therapist entered for Haven's therapy session.   Oops!  It turned out for the good because she saw Haven eating well and determined she was ready for another swallow study.  A swallow study is an x-ray of a child's mouth/esophagus while the child is swallowing.  It helps the speech pathologist determine if a patient is aspirating foods or liquids.  We are planning to repeat Haven's study on Friday.  Pray that she is able to handle fluids that are un-thickened and foods that aren't blended.  It will be difficult to prepare those sorts of foods when we are staying at Ronald McDonald House with Haven.

Our therapy schedule was intense today.  Haven had all of her sessions in the morning.  Speech went well.  Haven was able to concentrate for long periods of time and asked to repeat several of the activities.  I was so thankful that she was using the word 'more' instead of her usual 'no'.  

After many hard fought battles,
Haven's therapist Miss J. wins Haven's trust!

OT went well.  Haven is growing increasingly bossy with her OT therapist, but our wonderful therapist has a great way of getting Haven to cooperate with her.  I'm encouraged that I see Haven's personality back in full swing.  She likes control as much as her Mama!  One of the things that Haven likes the most control over is food.  Before her stroke she detested when anyone would try to feed her.  She would turn her head and shut her mouth tight before she would take a bite from our hands.  Well, having a stroke and not being able to feed yourself is a great way to lose control!  On Haven's first day of PT the Child Life Specialist brought Haven a cooking set and a tea set.  In that cooking set was a spoon with a fat handle.  It seems like she has held onto that spoon for dear life since it was first put into her little hand.  She holds the spoon when she is awake, when she is eating, when she is asleep, and would have even taken it with her into the bathtub if I had allowed her!  That's how much Haven likes to be in control!

Haven clearly expresses her opinion of the
exercises during her PT session today!

There was crying today in PT, but much less than normal.  Today's praise is that Haven actually stood by herself for a minute or two.  Did you hear me?!?!  I said that she stood--a mere three weeks following her stroke!  I don't deny that she still needs a ton of help and she is still weak and shaky, but she stood by herself!  Neither the therapist nor I think that she even knew what she was doing. Our wonderful PT therapist is great at distracting Haven with play while getting her to work her muscles and body.  Haven did much standing and walking today and tolerates it a little better each day.

After PT, I took Haven for a walk to the cafeteria in one of the little red wagons that can be seen all over Akron Children's Hospital.  It has been difficult to find the time to run to the cafeteria for Mama's food lately and I was so thankful to have a decent lunch today.

After lunch we returned to Haven's room to pump her full of water and juice before she had her own meal.  (Aaron likes to say "Eat your water Haven.")  Haven's doctor came in right before nap-time to check up on our little patient.  To my surprise, she decided it was time to pull the feeding tube without my even asking.  Within two seconds our nurse had that nasty tube out of Haven's nose.  Our little gal was able to sleep in peace without a silly tube tickling her throat.  While Haven was napping I went to tour the Ronald McDonald House.  It is actually pretty nice.  It looks like I will be permitted to bring all four kiddos up to join their sister sometimes.  It's good to know that we have a backup plan for child care, regular meals, and a private shower during our days up here.  It's also a blessing to know that we will be permitted to live at home on the weekends without losing our spot at the RMH (Ronald McDonald House).  What a blessing!

Aaron and Brenna are hanging out with me this evening.  It's so nice to have some of my family with me. 

So, as you can see, things are improving here.  We continue to marvel at Haven's daily improvement.  We are learning to take one day at a time and to not worry about tomorrow.