Weekend Wackadoos

My wacky family and our weekend.

I have been working on Justin's birthday present for a week or two.  And he was instructed to avoid the basement bedroom.  Like the good husband he is, he stayed clear.  Well, I finished it and I couldn't hold off giving it to him.  (like usual!)  So...check it out...

He was pretty surprised and happy with it.  I think.

My little monkey.

 

We got a touch of warmer weather for the weekend.  

And we got to take our first family bike ride of the year.  Jayse was quite nervous about being buckled in.  But as soon as we took off, he loved it.  Kamalee is getting a touch too big for the bike trailer.  Her head rubbed on the top.  We tried to take it off but then poor Jayse got splattered with mud!  So back on it went.

 Bike Selfie!

 Back at home to play...

oh Boys!

 He really enjoyed the mud puddle!

 Tough rider!

Thursday, I got a text from Kamalee's teacher:

"Had a chuckle!  Bus driver thought you told her she could eat her snack on the van!  She will need a bath tonight :)"

hmm...darn sub bus driver :)

Wackies!

Enjoy your week!

Round 3

Well, Kamalee has her 3rd surgery scheduled for Thursday the 3rd.  

The ENT called with the results of the ABR.  Her eardrums are not moving.  He said that she does have fluid in her ears and  this could be the reason the ear drum isn't moving.  Or it could have something to do with 3 small bones in her ear.  Kamalee's ear tubes are not fully developed.  So, they are not working properly and she is basically getting a vaccuum inside her ear.  The body does not like this and creates fluid to fill the void.  Which is where we are.  He also stated that she is probably hearing like she is underwater.

(insert mommy worry and sigh)

So how long has this been going on?  Should we have noticed something?

We don't really know.  The only reason we had her hearing checked was to eliminate other health related problems on our road to the ADHD 'diagnosis'.  Again, she has not been diagnosed with ADHD.  We are just going through a checklist of items, to see if behaviors have come from a health issue versus a mental health issue.  So, in hindsight, it is a good thing that we ended up going down this road and finding this out.  

We go back to visit the ENT and audiologist on May 12 to check the tubes, check if the fluid is gone and retest hearing.  If they are able to see improvement and that the tubes are working, we can assume that the tubes will fix the situation.  If they are not able to get clear results this day, we will have to then going back to the Children's Hospital for another sedated ABR.  There is a slight chance that this could have caused nerve damage.  (insert more mommy worry and sigh.)  Pray that this isn't the case.

If the tubes do the trick, he says that she will outgrow this.  But it is possible she may needs multiple sets of tubes, until she does.  I guess that is the best scenario.  We will go across any other bridge, if we come to it.

ABR

Anxious Bout Results.

Kamalee is on her way for her sedated ABR.  Unfortunately, Jayse has a cold and couldn't go so I stayed home with him. I hate that I can't be there with Justin and Kami. Please pray for a quick and uncomplicated procedure.

Will keep you updated on the results. 

Mustard Seed

Putting my need to "do arts" to work.

I introduce you to my new page.  Please check it out!

https://www.facebook.com/mustardseedarts

Can you hear me now?

In addition to my last post....

one more step we needed to take for Kamalee's 'exclusions'...was a hearing test.

Yesterday, we saw an ENT and Audiologist.  It seems that Kamalee hears ok.  But he was finding fluid in the ears.  Now, we are to have an ABR done at Children's.  We will got to the hospital to have her sedated and do more intensive testing done.  This will help find if the fluid is in the middle ear or inner ear.

From what I understood:

If it is middle ear, it should be an easy fix and we will do tubes.  This is the best route.  It just stinks that she has had very minimal ear infections (uncommon for DS kiddos) but she probably will still end up with tubes.  Make that surgery #3.

If it is inner ear, we may have more problems that tubes probably won't fix.  I am not 100% sure what this means.  I did ask if that meant that it may be permanent and cause hearing loss and would need hearing aides.  He said he would be surprised, as she seems to hear well, but that could be a possibility.

Pray for an easy fix.  Waiting to hear when the ABR will be scheduled.

Get REAL!

It's been 14 days on our new journey.

Some of you know, we have been starting all the doctor visits, again.  After getting pretty settled and to a 'normal' life again, we figured we better get to it.  

Kamalee had been displaying rough, sporadic and wild behavior.   Even more than her normal.  It had been escalating, quickly; since Jayse, moving to a new state, living in a camper, living with another family and then a whole new house again.  (I guess we can't blame her.  That's a whole lot of change for a little girl.  And even more for a little girl that does not like change.)  But it was getting overwhelming and too much to handle.

One day, it felt like I couldn't do it anymore.  I couldn't handle her temper and yelling and hitting.  I was stumped on how to move forward.  So I reached out to a facebook community and asked for help.  I was happy to learn I was joined by much company.  It is a little easier to deal, when you know you aren't the only one.  Of course, there were comments I wish I would have not had to read but many helpful people, in the same situation, and good advice.  I thank God for the kind individuals that were able to give advice and reassurance that I wasn't doing anything wrong. As for the others, I won't acknowledge them. :)

In January, we finally found a pediatrician to have her be seen.  (We LOVE her by the way)  After my concern and expressed school concern, we thought Kamalee may have ADHD.  It sure would explain a lot.  I like to know what I am getting in to.  So, for weeks prior to the doctor visit, I did lots of research.  ADHD is a hard diagnosis.  And even hard to pair it with Down syndrome.  And so our journey starts.  

To be given a diagnosis of DS/ADHD, it is done on an exclusion process.  Exclude ALL other medical possibilities until you don't have any other ideas what the cause is...basically.  So we did the blood testing, thyroid testing, vision screen and so on.  So far, all has been good.  Great news.  But that means we are steps closer to ADHD diagnosis.  I asked the doctor what we could do, without medicating.  Eliminate milk?  Gluten? Therapy?  She had one small recommendation, to eliminate RED food dyes.  It was one of those things where I thought, hmm...interesting.  But kind of forgot the idea by the time I got home.

Back to my facebook community and helpful friends.  I would guess that 45-60% of the good advice has to do with RED dyes. 

After a couple weeks, and a few days of red dye research (I tell you, I research everything.  I like to know what I am getting in to.)  I found some really nasty facts.  Like red dyes are made from petroleum or bugs.  Gag.  It completely shocked me to read about the "foods" we put in our bodies.  In case you are not ready for a life change....I won't share more about that.

But, that got me more motivated than ever to be healthier.  We started the 100 Days of Real Food.  If you want to know more, check out her site.  We are in the process of eliminating all junk, ie. processed foods and dyes.  We are commited 100% to  no dyes.  As for the processed food, we are following an 80/20 lifestyle.  80% of what we eat is all natural and no preservatives.  There are still a few things we haven't totally switched over; peanut butter, non-pasteurized milk, organic eggs.  But this is a huge 180 for our family...I think we used to be know as the SweetTreatsCrew.  

After 14 days, I am happy to report:

Kamalee's attitude has improved tremendously.

Both kids are eating healthy and really well.  Only a few "eeuuwwiieee"s at supper. :)

Justin and I have both lost weight!  (if you don't have facebook, Justin can now where his skinny jeans)

Kamalee's sleep has improved.  She has slept through the night about 10 of the 14 nights.  HUGE!
We have much more energy.

I think we will be sticking to this!

So.....South Dakota family...get ready for a change when we are home.  Gramma Cindy, better get some good recipes.  No more chocolate cake and white frosting (unless adapted to REAL foods, of course) :).  Papa Joe and Grandma Bubbles, lock up those cookies and no more ooey gooey caramel rolls.  

(Well, maybe just for me and Justin.)  

We can cheat once, right?!

Ms. Ele Phant

Remember our runner Jeni?  

Her first 5k she ran for Kamalee, she ran with her daughter.  And her daughter ran with Ms. Elephant.  Last week, Kamalee got a package in the mail...meet Ms. Elephant.  She was pretty excited to receive her own mail and have such a fun surprise inside.

  Thank you Jeni and Tyler for running our first 5k.  And for Ms. Elephant.  She will get plenty of love here.