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!!  

WOW!!  

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!!!

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!!

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!!!

HALLELUJAH!!

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.  

DON'T YOU JUST LOVE IT??

What a cute little old man he will be!!

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.

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.  

I. WAS. FRANTIC.

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 any longer 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 immediately applied with a gauze sponge and after a few minutes the bleeding stopped, as did Rees' screaming.  

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 ... 

... PLEASE PRAY WITH US! 

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

... UPDATE: later, we learned that the oozing was NORMAL because of the residual blood inside his head that was being "pushed" out as the distractors did their job of pushing Rees' forehead forward.  Ohhh ... okay, well that makes sense. After two days, the oozing completely stopped.  Hooray!!

Home AGAIN!

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!! 

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.  

Are we on Candid Camera?

Okay everyone ... let's have it!  Tell me where it is!  I know we must be on Candid Camera or some weird, twisted reality TV show.  C'mon ... just spill the beans!

Really, this day, in addition to yesterday, in addition to the last month, in addition to the last year ... seriously ... all I can do is LAUGH now!!  

Today started out really pretty good.  Rees' fever broke this morning.  He was talkative and positive (not his usual self after open-head surgery) and determined to force even the tiniest bit of vision out of his swollen eyelids. 

 In fact, I got this cute and entertaining video of him, which I hope you will be able to watch. 

   
For those who need it, you should be able to click on the link below and it will open the video as well.

https://drive.google.com/file/d/0B_pmASIGpCIcQUpkbVY4UVRzYXM/view?usp=sharing

Later he was able to have all of his lines removed and we were able to relocate out of the ICU. The plan was to get Rees sitting more upright, then walking around a bit, eating, ... you know, all the typical things that move a person toward recovery.  Our intention was to "get moving" once we got into the new room.  

HOWEVER!!!

We weren't in our new room for even fifteen minutes ... and do you know what happened??

While trying to get Rees more upright in his bed, one of the distractors just came out !*@!#*!!!  Are you kidding me??  Due to the constant bleeding, the blood had thickened and stuck to the end of it, which was near the foam donut his head was resting on.  Well, when he moved, the distractor STUCK to the foam and not in his head.  YIKES!

After the initial pandemonium but then realizing that he didn't even feel it and his head didn't implode or anything, all we could do was laugh!  Really!  If there's a possibility of a complication, rare occurrence, or happenstance, ... if Rees is involved, IT'S GOING TO HAPPEN!

So, here's what the distractor looks like.

The photo below shows a distractor in place.  

The important thing to understand here is that the part of the device that came out is not a structural piece; it is merely the propeller.  It's necessary to carry out the movement of the device but the structural support was further inside, held in place by a segment of linked hardware.

Here's our little buddy doing his best to try to see through the slits of his eyes today.  He really was a trooper!! 

What this means is that, tomorrow, we are back to the O.R. to replace the disgruntled distractor.  We're tired.  It's been a long day ... but we're good.  We're doing fine.  We're troopers!  And I'd really love to tell you about the other entertainment of the day that involves taking my "family circus" down to the Cafe for dinner and [a show] ... starring US ... but I'm tired so not.gonna.do.it.  

To the viewer it must have been highly entertaining.  [A live reality TV show!] 

But, it's all good.  I L-O-V-E my "family circus" and I wouldn't trade them for anything.

So, stay tuned ... you just never know what tomorrow's gonna bring.   

Hi Friends,

As you know, Rees had his lumbar shunt removed almost a month ago now and since then he has had problems with headaches and vomiting episodes.  It's been very difficult.  It's been confusing.  There have been so many things happen so I'm just going to get this all out so that I can keep everything straight, but also to provide an update.  I will just start from the beginning and go in order as best I can.

Rees had multiple surgeries last year, as some of our faithful readers know, and one of them was to place the lumbar shunt to facilitate proper healing after numerous complications and a possible CSF leak.  Whether or not it really did what was intended, it worked.  Rees FINALLY healed, though very slowly, and we began to make forward progress.  Then we had the "dud" surgery in July and found that Rees' skull was going through bone resorption but by the time he had the next surgery in October, things were improving and he finally had a surgery that seemed to go really well, without all sorts of complications.  Over time, Rees periodically had small bouts of lethargy and vomiting.  After this had happened a few times, we realized that the issues were likely linked to the lumbar shunt, ... something that is not uncommon.  Knowing that Rees was coming up to his next surgery which was scheduled for January, we felt that it was time for a CT of his skull.  We could feel pockets and divots on his head and gathered that there were portions of his bone that was not filling in or growing as was expected.  We had actually asked about this during the summer but the surgeon did not want to "see it" just yet.  Foreward to December and sure enough, the CT revealed that Rees' forehead is collapsing and he has tumor growing just below the forehead.  The original plan to remove existing hardware and do a bone graft was going to have to be altered slightly as now the craniofacial surgeon felt that Frontal Distraction would be necessary to correct the collapsing forehead.  The consensus was (as far as we can accurately tell) that if Distraction was going to be part of the plan then the Lumbar Shunt should be removed. [ Distraction osteogenesis (DO), also called callusdistraction, callotasis, and osteodistraction is a process used in orthopedic surgery and oral and maxillofacial surgery to repair skeletal deformities and in reconstructive surgery. ]

Soooo ... about a month ago, Rees had the surgery to have his lumbar shunt removed.  Easy Procedure.  Quick.  In. Out.  No. Big. Deal ... Right??  WRONG!!  Well, he was so sick and we were in the hospital with him for four nights.  Since then, he has been quite ill on and off with headache and vomiting, dizziness and lethargy.  It has been so discouraging and even frustrating because we didn't have any clear indication as to why it was happening.  We were told it could just be that he was adjusting to the change because for nine months his body was used to having the fluid around his brain regulated.  We were told that he MAY have a leak somewhere and that it might be necessary to do a Blood Patch.  We were told that maybe he had an underlying GI issue that we just weren't aware of. [ Lumbar–peritoneal shunts are used in neurological disorders, in cases of chronic increased intracranial pressure to drain excess cerebrospinal fluid (CSF) from the Subarachnoid cavity ... ]

Because he was so down and out with these inconclusive, misunderstood symptoms, the craniofacial surgery that was scheduled for end of January was cancelled.  It was rescheduled for today.  However, in the last week, Rees has been ill with the vomiting and then ... THEN CAME THE FEVER.  Oh BOTHER!

On Sunday, After a few good days, the vomiting started again and this time accompanied by a fever.  Nothing outrageous ... considered low-grade, but nonetheless, a fever that caused us to wonder if his surgery would yet again be affected.  We had an appointment scheduled for Monday because Jonah needed follow-up from his surgery and Rees needed pre-Op review.  Well, I called to cancel thinking that they wouldn't want to see him with a fever and that the surgery would be cancelled ....

... BUT they still wanted to see him.  However, once they did see him, they were VERY CONCERNED (Monday was a bad day with the vomiting).  They sent us to the Anesthesia department for evaluation and then to the lab to have some blood drawn.  Rees' (WBC) white blood cell count was nearly double the high end of the normal range, which indicates infection.  Uh-Oh!  This raised all kinds of red flags, understandably ... but frustratingly, as well, as it would likely mean more delays with Rees' craniofacial corrections.  [All this time, Brian and I felt that the real problem was hidden "in plain sight" within Rees' collapsing forehead.]  We were told to monitor the fever and keep track of any additional symptoms.  We were also told to still come in on the day of surgery but to know that there would likely be changes to the procedures.  We were told that the Blood Patch would most likely take place no matter what in the hopes that it would relieve the vomiting/headache issue.  [ An epidural blood patch is a surgical procedure that uses autologous blood in order to close one or many holes in the dura mater of the spinal cord, usually as a result of a previous lumbar puncture. The procedure can be used to relieve post dural puncture headaches caused by lumbar puncture (spinal tap). ]

So, we arrived early in the morning today and went to Pre-Op, as usual.  We were trying very hard not to talk about what was going on and what might happen because we did not want to raise Rees' anxiety level.  But he is a smart cookie and we know that he was contemplating every move.  He knows the rooms, the routines, the questioning, the vitals ... he knows what it all leads to but we told him only that we knew he needed to have additional labs done because that was what we knew FOR CERTAIN before anything else would take place.  The labs were done and we waited.  And.waited. And.waited.  After a while, the neurosurgeon came and spoke with us to let us know that he was recommending that WE NOT MOVE FORWARD with the craniofacial portion of the surgery, however, he wanted Rees to have the Blood Patch, but AFTER having a Spinal Tap to check for infection. [ A lumbar puncture (also called a spinal tap) is a procedure to collect and look at the fluid (cerebrospinal fluid, or CSF) surrounding the brain and spinal cord.  During a lumbar puncture, a needle is carefully inserted into the spinal canal low in the back (lumbar area). Samples of CSF are collected. The samples are studied for color, blood cell counts, protein, glucose, and other substances. Some of the sample may be put into a container with a growth substance. This is called a culture. If any bacteria or fungi grow in the culture, an infection may be present. The pressure of the CSF also is measured during the procedure.]  What's important to know here is that Rees no longer had a fever and his labs came back ALL NORMAL, including the WBC.  

So, I was very hesitant to agree to this because one of the most common side effects of a spinal tap is a spinal headache (which is WAY WORSE than the headaches that Rees has been having; I know because I've had one).  I felt like we were just giving permission to take two steps back, which I was certain would be the case.  I wasn't certain that it was actually necessary because the labs had come back normal so, in my mind, there was no reason to check for meningitis or some other serious infection.  However, we did end up giving after I had my mini-fit in the middle of the Interventional Radiology department.  The Radiologist and Anesthesiologist carefully, calmly, and collectively discussed the importance of the procedure.  There tried really hard to bring me down to a level of rational response ... which they did very well, I might add ... so in the end, we consented because we did feel that it was important to get the information regarding the pressure of Rees' CSF (cerebral spinal fluid), something which had NOT been mentioned until now but was something that we had wanted all along; there just didn't seem to be a connection.  

So, we went to the OR waiting room and chatted and just hung out somewhat deflated because of the detour we were taking.  When it was time for a parent to be able to go to Recovery, Brian went ... it was his turn.  Yes, we take turns.  And when it was finally time for me to get to go back, I was all ready to see my little guy upset and groggy and fussing but he was not.  He looked wide awake, alert, and content.  He was playing on his little device.  I thought, that's odd ... but was then told that he had been crying a lot and that helped to calm him down as well as the versed drug they gave him.  Ooo ... okay, good.  (I wish I would have taken a photo of him like this)  But then in a matter of seconds, a flood of information came in that took us for a sharp turn on this roller coaster ride.  WE WERE MOVING FORWARD with the frontal distraction!!  What?  Really?  What's the deal?  
Apparently, Rees' CSF pressure was measured first during the spinal tap.  Now, I don't completely understand all of this but I am beginning to get a much clearer picture.  Normal "CSF pressure, as measured by lumbar puncture (LP), is 10-18 cmH₂O (8-15 mmHg or 1.1-2 kPa) with the patient lying on the side."  Rees' pressure was 50 at resting state (yep, FIFTY!)  That is not good and is a flashing.red.warning.light!  This is the reason Rees has had so much trouble since the lumbar shunt was removed.  Rees' brain is growing but his skull, due to all the problems he's had, is not growing at the same rate and, in fact, has reduced in size due to bone resorption and collapse and has created space issues.  Uhm, ... didn't we ask about this?  Why, YES we did!  Hmmm ... like three times in the last six weeks!

I wasn't upset, though ... I was ecstatic, really!!  I was just so relieved that the situation was going to be taken care of, that Rees was going to be relieved of all that he had been struggling with since the shunt was removed.  It made perfect sense to us and we don't know why it was overlooked ... too obvious perhaps ... but the shunt was helping to regulate Rees' CSF pressure but when the shunt was removed, the regulation was gone and due to the crowding that was taking place, the pressure was dangerously elevated and needed to be addressed right away.  Rees was taken back into surgery shortly after that and the neurosurgeon removed a part of the front of his skull to immediately relieve some of the pressure and the craniofacial surgeon affixed new hardware and also distraction devices which will be adjusted daily to further tilt the forehead to allow pressure relief and new bone growth.  That is the idea anyway and we are praying that his body cooperates with this plan.  He lost a considerable amount of blood again which was, of course, replenished and will continue to be given as needed while in the ICU tonight.  

So, while we still did not move forward with resectioning the hamartoma (the new tumor growth) and the nasal bone graft seems to get further and further away from us, we are very happy that the issue of his ICP (intracranial pressure) has been addressed and we should hopefully see some improvements after a few days of recovering from the surgeries.  Please pray for that with us!  Please pray for this little trooper-of-a-kid!  He's been through so much and we just want him to stay STRONG in Spirit and Heart.  

There's so much more I could say but this is already a long post so that's it for now ... will update again later.  You can count on it but I'm sure you didn't have any doubts, anyway!  (wink, wink)

So much happens in so little time around here, so, of course, this means I have several things to update on.  We have tried to maintain some normalcy around all of the issues we continue to have with Rees.  It is a challenge but we try for the benefit of the other children.  

Jonah continues to do great after his surgery.  He had the last weekend to recover and was able to go to school on Monday.  His birthday was the day of his surgery so we had to wait a couple days to celebrate with him.  He didn't seem to mind.

He picked out his birthday cake and he was quite excited to eat it.

He likes his new "Paw Patrol-Marshall" pajamas!

Then this little cutie's birthday was this past Friday.  

Isn't she adorable??

If only they could stay this small - this was eight years ago.  

We had a very special surprise for Brynn.  Her baba took her to the Daddy/Daughter Dance that happened to actually fall on her birthday.  We surprised her with a hair appointment so she could get all jazzed up!

She was very excited to get her hair done!

So pretty!

Her Baba gave her flowers and candy before they left for their date ...

I just love this photo ... it is so sweet!!

The next night we celebrated Brynn a little more ... but with all of us at home.  She chose homemade Mac and Cheese for her dinner choice.  

Ahhh ... the simplicity of children.

And then we had ice cream cake ... it was really nice!

Now to update on Rees ... well, he continues to struggle since having his lumbar shunt removed.  It is not every day but it has been several times a week that he has headache with vomiting or just random vomiting.  THIS. IS. GETTING. OLD!!!  Oops!  Did I type that out loud?  

Yes, I'm trying to remain witty ... and hopeful ... but, to be honest, ... which I usually am ... I really am bordering "throwing in the towel".  But I continue to do what I can ... and I continue to pray for God to do what only He can do ... 

And I continue to read His Word and cling to verses like - 

Be Brave.  Be Strong.  Don't give up.  Expect God to get here soon. - Psalm 31:24 (MSG)

I know what I am planning for you,” says the Lord. “I have good plans for you, not plans to hurt you. I will give you hope and a good future. - Jeremiah 29:11 (NCV)