Tuesday, February 21, 2017

So, guess what everyone??

Rees went to school today!!  

Can you say WOO-HOO!!!  and HALLELUJAH!!!

But, let's back up just a couple days because I am a tad behind in updating.
On Saturday, we celebrated Rees' birthday since he was in the hospital on the actual day of.  

His dinner choice was homemade chicken pot pie ... excellent choice as agreed by all the family members!  His beverage choice was Sprite ... easy-peasy.  

And then he requested that his "Unfle" (uncle) Dave and Auntie JenJen come to celebrate with him.  He was glad that Unfle Dave was there to play 'thumb wars' with him.

Then he had a little goofy time on Baba's lap ... his mood is definitely improving!

And then we had birthday cake!!!

It wasn't anything too extravagant.  Good thing ... because by the end of the day he was one wiped out little guy!  

Yesterday was a REALLY LONG DAY with multiple appointments for both Jonah and Rees.  

Rees had surgery follow-up along with the removal of staples and the distractor pins.  Eek!!
 But first, Rees had the opportunity to have some fun-building time with Baba before we had to leave for the appointments.

The appointment went well!!  I mean, ... well, there wasn't any major catastrophe or twist of events as has frequently been the case.  The removal of the distractor pins, I thought, was going to be a horribly terrifying experience that was going to end in blood spill and screaming.  But nothing of the sort!!!  Rees didn't even flinch!  We kept him distracted with a game and Dr. Denny, using his trusty tools, popped the safety release on the pins (which we did not realize were even there) and out they came!!  
The holes that were left (EEK!) were immediately cleaned and packed with antibiotic ointment.  Twenty-Four hours later and the openings have shrunk like shrinky dinks!  They are nearly closed off - AWESOME!

Of course, Rees was N-O-T at all happy about the removal of the staples, but this was expected.  I know that it hurts ... more in some areas, like right above the ear ... but we did our best to help him through it.  We were sure glad when that part was over.

The inside of Jonah's mouth was checked and we had some discussion about the next steps and if/when to take the next step.  We also had similar discussion regarding Rees.  

It's a long road we're on with these two, folks ... a long road.

After that first appointment, we celebrated with some ice cream.  We sure felt that at least one of us deserved it immensely, so ... of course, we ALL got some!

Ice cream makes a HAPPY FACE!!!

A little less external head-metal sure helps too!!!

So, this happy boy returned to school today!!
And that makes EVERYONE happy!!!

Friday, February 17, 2017

We're continuing to do well here ... especially since we have the most-genius-of-ideas in this airplane/neck pillow!! 
THANKS SO MUCH, Auntie Jen-Jen!! 

It's been several days that we have successfully turned the distractor rods and they are disappearing more and more into Rees' head ... EEK! He's starting to feel a lot better and he's definitely looking better too.

That tilt of the head, however, is N-O-T a photogenic gesture ... I'm sorry to say that Rees has quite the stiff neck and he moves as though he cannot turn his head.  We've tried to help him each day.  His neck is so tight!!  We think that it is possible that he was so afraid to move for those first several days, now he has a pretty serious kink in the neck.  It is going to take some time to work this out.

This afternoon was SO GORGEOUS outside that I was able to take Rees out for a short walk and then he spent a good hour, at least, out on our deck soaking up some warm sunshine, putting puzzles together.

He really enjoys puzzles!

He didn't stop until he had finished them all!

We saw Dr. Denny again yesterday.  He checked progress and confirmed that we should keep turning through the weekend.  We will return to see him on Monday and the plan is to have the staples removed and then Dr. Denny will take out the rods ... (YIPPEE  &  YIKES!!).

This is supposed to be something that can be done right in the clinic and we're hoping and praying that is exactly what happens.  You just never know with this boy!  So, let's pray that it goes well and without any "you know what!"  

On the other side, Jonah will also be seeing Dr. Denny in follow-up to his most recent surgery.  Although, we don't expect to hear too much other than when the plans are to re-do the surgery.  Yep!  That's right!  You read that correctly.  You see, in our family, it seems that we like to do things twice.  

Apparently, Jonah "UN-DID" what Dr. Denny did during the surgery to revise and enhance the pharyngeal flap  ... WITH. HIS. TONGUE.  !!!

Folks, I just can NOT make this stuff up!!  At the last follow-up, Dr. Denny took a look into Jonah's mouth, flashlight in hand, giant-super-seeing glasses on the nose and Dr. Denny, TSK'd and said, "You're kidding me!"

"What is it?", I asked.

"He's completely unzipped!"

"Huh?", I questioned.

"He's ripped out all the stitches!"

Looking dumbfounded at Jonah, I asked, "Well, how did you do THAT?"

Jonah just looked at me and stuck his tongue half-way out and wiggled it.

Yep, that's right ... like I said, I can NOT make this stuff up!!

Wednesday, February 15, 2017

Hello Everyone!

We are maintaining good progress here!  THAT's A RELIEF, isn't it??

Since the major scare on Monday morning, things have gone better.

I have "turned" the rods on Rees' head four times and it has gone much better.  we take it really slow and Rees does his deep breathing.  He is so brave!

Monday night, our good friend, who went with me to the hospital, came up with the idea of using an airplane/neck pillow to help keep Rees' head stable and it worked BEAUTIFULLY!!!

His head does NOT move AT ALL!!!

Each time the rods are turned, his forehead is moved forward one half millimeter.  We turn twice a day for a total of a millimeter each day.  This will help correct the collapse of his forehead and also allow more space for his brain to grow.  Because of all the complications that Rees had last year and all of the bone loss, his skull growth could not keep up with the growth of his brain.  

This created the high pressure that Rees was having which explains all the symptoms he had been having for the last few months but were amplified when the lumbar shunt was removed a month ago.  
We continue to learn so much medically speaking but also about this sweet little boy.  
Thanking God for sticking with us as we continue this work.

In other news, we have unfortunate news to share about Jonah ... it seems after his birthday two weeks ago, he has succumbed to a rapidly aggressive aging process that has pushed him from 8 to 80!!!

Just kidding!!

But take a look at that!!
Jonah's class celebrated the 100th day of this school year and all the kids were supposed to dress up as if they were 100 years old.  So, we got some paint sticks to make his hair look gray and got a fake moustache to match.  His teacher used a computer application that added the lines and wrinkles.  


What a cute little old man he will be!!

Tuesday, February 14, 2017

Woo hoo!!! You all MUST be praying with us!! Dr. Denny called on the phone today to see how Rees did overnight. I gave him my report and he asked the dreaded question, "Have you turned him yet?" Uh, uh, I, uh, ... well, ...

He said, "It needs to be done and you can do this." And then he walked through the 'ifs and thens' and he said to be sure to let him know as soon as it was done.

Rees could hear the whole conversation and he began to get a bit anxious but he let me explain what we were going to do and I turned on a Paw Patrol episode on my tablet, he did his deep breathing exercises as did I and I prayed a quick prayer asking God to be with me and do this for me.

I went really slow and watched very carefully and ... PRAISE THE LORD! ... SUCCESS with not even a wince, a whimper, or any waterworks!! I was also able to moisten and maneuver the dried packing of gauze from around the rod that had been oozing since yesterday.

We called Dr. Denny back right away and Rees wanted me to be sure to let him know that He had been doing his breathing.

So thankful for the continued prayers and support. It has surely strengthened us.

Monday, February 13, 2017

I expect that you all may be tiring of my updates.  
Do you feel like you're on this up and down, topsy-turvy, motion-sickness-inducing ride with us yet?
I completely understand ... it is nauseating.

I only just posted 24 hours ago.  
Rees got discharged from the hospital.  All was well. 
We had a quiet, relaxing evening and tucked our little guy in bed propped with his blue donut on pillows.  

When I woke up this morning to check on him, I was immediately gripped by serious panic and fear.  
Rees was covered in blood around his head and face, as well as the donut, pillow cases and sheets.  
I NEVER saw so much blood in all my life.  

He was awake but he was just laying there as if he couldn't move.
I began making phone calls ...
... left sketchy messages 
struggled to get dressed ... 

ohhhh ... I am rather disappointed with how much I struggled.

Fast-forward through all the details that I can't share with you via photos (as I normally would), my good friend and I got to the hospital with Rees and all the evidence in bags.  

Rees wasn't actively bleeding but I was really concerned that he would need to be given blood.  He had lost so much that he was wobbly and threw up a few times.  I assumed that the blood had come from the location of where the distractor rods were.  He had oozed and bled from those spots while in the hospital, but NOTHING like this.  

The surgeon came to see Rees and after some discussion, he asked whether or not I had "turned" the rods this morning, to which I replied, "NO WAY!"  He said that the turning was necessary and I said, "Be my guest," and gave him the key.  He made the turn on one rod and Rees howled and began to jerk in the chair we had him in and when the Dr. went to turn the second rod, blood spurted everywhere and Rees screamed like crazy.

So, best we can figure is that Rees possibly turned his head during the night and perhaps the rod was jostled nicking a nearby vein.  Pressure was applied with a gauze sponge and after a few minutes the bleeding stopped.  

The sensitivity of this child's situation is really a detriment and hindrance to normal healing expectations.  

Frustrating is ... once we got back home with him, he began oozing from the rod that was turned at the hospital.  That was almost eight hours ago and he is still oozing.  We have changed the gauze several times.  He seems to be comfortable and not in any pain as long as we don't over-touch.  But this is worrying ... 

And we'll watch for our LORD to take over and do what needs to be done.  

Sunday, February 12, 2017


Hip-Hip-Hooray and Praise the LORD!!
We're home!!  We arrived home late this afternoon and we're happy to be (despite the good care we always receive at Children's Hospital of Wisconsin).

This photo is from last night.  Rees was sitting in the chair and eating well and feeling pretty good.  

During the night, he began oozing blood at the openings where the rods are inserted into his head.  The nurse was concerned so the on-call docs said they should wrap his head in guaze.  
He looked like a wounded soldier! 

He was a lot happier when they removed all that guaze!

Dr. Denny came to see how Rees was doing and he said that Rees was free to go home ...
(with multiple care instructions and supplies, of course)
... when it was time for all the ports to be removed, Rees wanted to help the nurse! 

He helped her wipe the tape with the 'de-stickying' pads and he also helped her with the band-aids.  He was a very good helper! 

Needless to say, he was quite happy!! 

Friday, February 10, 2017

Rees rested pretty well last night, however, he continued to bleed quite a bit.  There were staff in and out throughout the night checking on the situation.  
Rees didn't seem uncomfortable and nothing deterred him from getting as much "device time" as we would allow.  

The OR team came for him in the morning and we all went down to the Pre-Op holding area.  We didn't have to wait too long and Rees went into surgery for the third time in three days.  
He had lost quite a bit of blood during the night so they had blood ready for him in the OR to be administered.  The surgery did not last too long and within two hours we were on our way up to the ICU (again).  

Rees' incision was completely opened during the surgery and both the distractor rods were replaced.  The new rods are much shorter (closer to the openings in his head), which means we have to be more vigilant as we protect against infection but they look as though there will be less chance of them pulling out.

He was closed much tighter this time too so the incision is a lot cleaner and they inserted a drain for any blood he continues to lose.  He did lose quite a bit of blood during the surgery and the transfusion he recieved was to compensate the loss of blood throughout the last day and night ... sooo ... he has continued to receive extra blood transfusions today.

What an awesome gift to receive on your birthday!! 

He is doing pretty well and he is in good spirits, which is a BIG PLUS.