On The Move

I have been meaning to do another update, but finding the time has been super hard.  Rhett turned 15 months old on March 24th, and on that day he decided he would finally start crawling.  With his new found mobility, he is definitely keeping me on my toes.  Gone are the days I can leave him on the floor while I run to the bathroom.  The Pack-n-Play has become his jail when I need to leave him for any short amount of time.  He does his fastest crawling when he has his mind on climbing stairs, which he can do by himself.  He is not safe to climb the stairs by himself, but he is now able to do this without support.  This is one of the bad habits we have taught him in Physical Therapy.  It is great for his strength, but terrible for my mommy nerves.  Another milestone he has recently hit is the ability to pull to stand all on his own.  He is pulling to stand at toys, in his crib, on the coffee table, basically on anything and everything.  We are so thrilled for all of these huge steps he is taking.  It is so amazing how a kid that lacks a balance system can adapt and overcome these challenges.  Rhett is definitely determined in all areas, and he perseveres in all things.   

Last week on Monday, he had a very busy day with a swallow study and his 15 month checkup.  He hasn’t had a swallow study since October, and it is one of those appointments that completely stresses me out.  I work so hard with him on feeding multiple times a day, but it is one of those things that takes time to see improvement.  Up until now, he has only been cleared to do tastes of stage 2 baby food. Today he opened his mouth for several bites, and even signed for us to give him more.  When he was eating pudding, he did not show any aspiration.  Yay!  When he was offered applesauce, he did aspirate.  That means that he is not yet ready for thinner consistencies, and we will have to continue to work towards thinner foods.  The Speech Pathologist has now cleared Rhett to eat up to 10 bites of food that is the thickness of pudding twice a day.  This might sound small, but to me this feels like a huge step in the right direction.  Please continue to pray for his improvement with eating. 

Rhett also had his 15 month check up on Monday.  His entire first year we monitored his weight weekly.  I have obsessed over the amount of calories he is eating for his entire life.  At his 12 month check up, our pediatrician was pleased with his length and weight.  At that appointment he told us that we no longer needed to do weekly weight checks.  That was a huge burden lifted off of me.  I was very nervous going into this appointment since it had been some time since I had last weighed him.  Rhett is in the 1st percentile for length and the 3rd percentile for weight.  Although he is on the smaller side, he is still with the general population.  The pediatrician and I were both happy with his growth.  As long as he continues to grow consistently, we will not need to worry over it. 

This month Rhett will go to the Nephrologist to have a VCUG.  He has been on an antibiotic since coming home from the NICU for kidney reflux.  He has never had any kind of kidney infection, and his kidneys did not show any sign of fluid on the renal ultrasound done last October.  We are praying that the reflux is either getting better or completely gone when we go for this procedure.  If he still shows signs of reflux, we will continue to monitor.  This is one of those things that could require surgery to fix if it does not clear up on its own.  I would absolutely love for it to be completely gone so that we can check another specialist off our list.  It is always nice when there is one less thing to worry about.  We would love for you to lift him up in prayer as this procedure approaches.

One last thing as I bring this update to a close.  Rhett’s next airway surgery has been moved to a later date.  The surgery was originally scheduled for May, but it has now been moved to June.  Rhett will now have a scope of his airway done on June 14th, and the FEES swallow study will be done on the 15th.  We will also be meeting with the ENT that specializes in ears on the 15th to discuss possible options for Rhett’s left ear.  We are not sure if he is a candidate for a Cochlear Implant, and I think that will be one thing we will discuss with that doctor.  We will be coming home on the 16th for about a week before going back for the surgery.  Rhett will have the LTR surgery done on June 23rd, and then we will be in Cincinnati anywhere from 2-4 weeks.  Please continue to pray for all of us as we prepare for this next big trip.

Again, from the bottom of our hearts, thank you for following our journey.  We are so thankful for all of your prayers for our sweet boy.  God is so good.

Psalm 100:1-5

1 Shout triumphantly to the Lord,

all the earth.

2 Serve the Lord with gladness;

come before Him with joyful songs.

3 Acknowledge that Yahweh is God.

He mad us, and we are His-

His people, the sheep of His pasture.

4 Enter His gates with thanksgiving

and His courts with praise.

5 For Yahweh is good, and His love is eternal;

His faithfulness endures through all generations.