Friday, August 26, 2016

Time for an Update ...

Hi Friends ...
I'm sure I always say this, but "WOW! ... another summer has come and gone and it went way too fast!"
This summer has been a blur, each day just fading into the next.
We continue to be busy and are just trying to get by and get through ... one day at a time.

We have had a few ups and downs with Rees.  He really continues to be a medical challenge.  We recently took him into the Emergency Room when we feared he was going to get dehydrated due to vomiting for two days.  There was a day when I took both boys to get the next immunization on the schedule and one of them was for Hepatitis A.  Strangley, not even fifteen minutes after arriving home from the doctor's office, Rees began vomiting ... like out of nowhere.  Coincidence?

We were unsure but did note that nausea and vomiting can be a reaction to the vaccine.  This went on for two days.  He couldn't eat a thing!  Strangely, he had no fever or any other symptom.  So, we contacted the doctor's office and they suggested that we bring him in to the urgent care department as it was after normal business hours.

Okay ... so, this little guy has been with us for nine months now.  I am WELL PAST seeing the physical defect that is GLARING to a stranger.  And so sometimes, I am off-guard and taken back when I see the reactions of some people as they encounter my son for the first time.  The urgent care nurse literally ONLY took Rees' temperature and asked a few questions.  I could see that she was uncomfortable.  Other mama's of children with a visible special need ... you know what I'm talking about.  She left the room and came back in to say that she consulted with the providers and they felt that he should be taken to the Emergency Room.

A very nice lady came and said that Rees needed to be wheeled over to the Emergency Room.  They wanted Baba to hold on to him so he wouldn't fall out of the chair.  I think Baba enjoyed the ride more than Rees.


Brynn and Jonah tried to be supportive but really they were just happy that they got to watch TV, which is apparently the highlight of my childrens' medical dramas.


The HUGE difference between our family's normal medical provider and Children's Hospital became SO APPARENT to me during this visit.  We are not at all unhappy with how we or Rees were treated but there was a definite difference.  The staff took one look at Rees and it was almost as if they didn't know what to do with him.  I'm sure there were a million questions running through their minds.

It all turned out okay.  Rees didn't seem to have anything severe and one round of Zofran seemed to be enough to allow us to leave the hospital after four hours.  No IV.  No Labs.  Lots of TV and stickers.  

More recently, Rees has had a few more issues.  I'm telling you, he is keeping us on our toes.  For about a month now, he has been "spitting" stitches.  I know that sounds weird but there's no other way to put it.  That's the actual terminology, ... well, okay ... more technically, "suture spit".  

A "suture spit" is essentially where the body's tissue rejects a suture (or stitch) that is meant to be absorbed over time.  So, he has been "spitting" stitches, as I said, for about a month, up to three at a time.  Last week, all of a sudden, he developed a hard, circular lump to the side of one of the sites that stitches were in process of being "spit" out.  Do you love the terminology??

Anyway, the area was quite red and the lump seemed to get larger in the period of a day.  He also had some puss oozing from the areas where the stitches were poking through the skin's surface.  So, I took a photo and sent it off to the doctor.  I am actually pleased to report that in this particular scenario, the doctors reacted more panicky that I did!  Ha-Ha!!  That's a switch - see??  I am learning and growing!!  Anyway, they wanted me to bring him in right away and then come in every other day for six days.  Well, ... I said "NO!"
Really I did!  Can you believe it?

There's been so much going on and so many appointments and so much rearranging of my work schedule ... AND ... we had appointments for both boys in two days time.  I offered to bring Rees by on that day (since we'd already be there for other appointments).  **Disclaimer: Rees did not have a fever and I did not believe this incident to be even slightly similar to his complicated episodes of earlier this year.  I did tell the doctors that I would bring him in immediately if there were any drastic changes.**  

So, the doctors saw Rees a few days later and it was as was suspected.  His tissue was progressively reacting to the suture-spitting process.  One of the doctors even poked, prodded and attempted to "SQUEEZE" fluid from the openings along the incision where the stitches were coming through.  
NOTHING CAME OUT!

However, the next day, ... due to all that prodding and squeezing, Rees had blood pooling under the skin.  So, I cleaned the areas with peroxide, which drew out some of the blood.  Then I applied some antibotic ointment and a band-aid to protect the skin.  The next morning, when I took the band-aid off ... this is what it looked like ... EEeeWWWWW!!


BUT!!!  the sutures were FULLY EXPOSED!!  
This was both EXCITING and NAUSEATING!
You can see in the photo below the sutures poking through in a few places.  
I told Rees to hold REALLY still and I got out my very sharp tweezers and scissors and I pulled and snipped as much as I could of those vicryl sutures.


I was so excited!!
MOST of them came out CLEAN and EASY!


Rees does still have some scabbing and healing occurring in the three spots along the incision but we're hoping that the suture spitting is DONE now!!

Then there's Jonah!
Oh yes, ... we can't have one without the other.  
Yesterday morning, Jonah woke up and came to me, his mouth covered in blood.  Alarming ... YES!!!
I couldn't believe it.  I asked him, "WHAT HAPPENED?"  
He, of course, didn't know since he had just woken up ... but it was beyond me that he had slept through "whatever" had caused that to happen.
I cleaned off the blood and had him rinse his mouth out so that I could try to see where the blood was coming from.  I soon discovered that the wire for the braces on his top teeth had broken free from the teeth on one side.  Because Jonah has so many loose or non-usable teeth on top (at the moment), the wire was anchored and only attached to four of his teeth, two of those four were loose.  The wire must have been brushing and poking against his gums, cheeks lips ... hence all the blood.  

So, I quickly contacted the orthodontist and let them know that I need to bring Jonah in right away.  They agreed but explained that we would have to be squeezed in between other already scheduled appointments.  Wwhen we got there, we waited a very long time ... but finally they called Jonah back.  

They removed the wire right away and I expressed my concern for all of Jonah's loose teeth as the teeth have been in conflict with the appliances.  I asked about keeping the wire off for a bit to give us some "free" wiggle room for the teeth that were loose.  The tech said she'd check on that with the Orthodontist and she'd be right back.  Well, while she stepped away, ... I took a tissue and asked Jonah if I could wiggle his tooth.  He was concerned because he thought it would hurt but I said I just wanted to "feel" it.  So, I did feel it ... and then I just gave it a little tug and it came right out.  

Jonah was surprised ... and impressed ... mostly with himself because he didn't feel it and he didn't cry.  When the Tech came back, the Orthodontist was with her and I said, "Okay, ... one down ... one to go."  I said that because the two teeth (in question) were the biggest culprits.  Even though, I had already taken out one of Jonah's teeth with no issue, he was still nervous about his other teeth.  The Orthodontist said she'd just take a look and she used some topical anesthetic to help her see the tooth a little better.  She asked Jonah if he was sure he didn't want her to pull it out but Jonah put his tongue to the spot that the tooth had occupied and then he said, "Where is it??"  


He was so impressed with himself as he said, "Two teeth, ... Jonah no cry!"
Yay!!!  Two teeth down ... a few more to go!  

So, although, we continue to have medical issues, they've been relatively minor and we are very thankful (Thank-YOU, Jesus!!) that we've been able to get through them without any major upsets or complications.  

Last night, it was the open house for the Elementary School.  Both Jonah and Rees were SUPER EXCITED to go to school to meet their new teachers and bring all their school supplies.  Well, when we got there and we entered the building, ... they clammed up!  They suddenly got shy and quiet and did not appear to be excited at all.  We know this will pass after the first day.  They did give me smiles when I wanted to take photos!!  That's all that matters, right?!



It was a little disappointing that Brynn, who's going into 5th grade, didn't have the fun classroom and locker decorations that the lower grades had ... BUT ... it did give us the opportunity to tell Brynn that she could decorate her locker on her own, inside and out, and we'll have a little shopping trip to find some fun things to organize and decorate.

Our big "Dumpling", Molly, is going into her first year in High School!!  Oh My!!  
Not even sure how that happened ... oh, how I wish that time would not move so quickly.  Today, the incoming Freshman were invited to attend a special orientation at the high school and they were linked with Juniors and Seniors who spent time with them, prepared fun activities for them, showed them around the school, and gave them valuable information for the new adventure that awaits them at High School.  I still can't believe, though, that she's not 5 years old anymore ... and how much has happened since we brought her home from China!  I'm AMAZED that in October it will be TEN YEARS since she became our precious daughter!

Only 10 more days until the new school year!!  
But until then, we should have a few more things to share with you ... stay tuned because Jonah and Rees are about to experience their very first County Fair!!


















Thursday, August 11, 2016

Hi Friends!  I realize it has been a while since I have updated but, as you can imagine, (hopefully after reading my last post) we continue to deal with a lot of things.  I am still in the midst of the famine.  

**I would like to suggest to you (for those of you who continue to check back for updates and new developments) that you sign-up for automatic email updates.  You can do this by entering your email address in the left column of the blog, beneath the various photos of our children.  There is a space that reads: "Follow our journey by email - get automatic updates."  Enter your email address and then you will receive an email asking you to confirm your sign-up request.   You can also request to be on my manual e-mail list
 by sending me an email at prenderbergs@gmail.com.**

Jonah has healed quite well from his distractor removal in late March.  He continues to see the surgeon for periodic follow-ups as well as the Orthodontist on a regular basis, which up until last week was weekly.  I am so pleased that now his appointments will be bi-weekly for the next month and then hopefully after that will be down to once a month for a while.  Jonah also now sees a speech therapist on a weekly basis.  Fortunately, he really likes the therapist and the sessions go by too quickly in his opinion.  He enjoys working on the various tasks she gives to him but overall, Jonah still isn’t able to speak very well.  We find that it is more difficult to understand him after everything that has been done to him.  But he puts forth good effort in trying to speak.  He knows exactly what he's saying and his comprehension is excellent ... so we'll just keep working at it.






Rees continues to be followed by the surgeon as well and now does not need to return until the end of September.  He will have his follow-up with the neurosurgeon next week, which I am anxious for because I’d like to discuss the fact that the CSF leak continues.  He is scheduled for more surgery in late October and at this point the “plan of attack” for what will actually occur during the surgery is up in the air.  He continues to baffle the doctors but we are definitely happy that he is hanging in there and doing well for the most part. 

The boys like to hide from Dr. Denny before he comes in to each appointment.  They do it every time now and they think they are just so clever.  



Both boys are VERY EXCITED for school to begin and they don’t seem to understand why there have been so many days off of school. Each day they ask if it's a school day and I tell them "not today."  Jonah will then ask, "tomorrow?"  It's wonderful that they are so eager to go to school.  Here where we live, the kids do not go back to school until the day after Labor Day.

I hope to provide a better update in the future and will hopefully be able to share more ... thanks for hanging in there with us.