Friday, April 18, 2014

Meet our newest family member...


Mr. März Walker!

Isn't he beautiful? He's 18 years old. Arabian. And simply the most gorgeous horse I've ever seen. The story behind Marz is equally as beautiful. 

Azlan's speech therapist is giving us Marz.

Yes his name was Marz. With a "z".  No our therapist did not know Azlan has 9 siblings with a "z" in their name.  Yes...this is really cool.

Marz is so amazing he's been used in the Pegasus program for children with special needs as a horse therapy. That's...amazing.

The story doesn't stop there. There was a "...but" to this amazing gift.  Marz was diagnosed with a problem in his foot.  And that scared off a few others who loved him.  Our therapist called us the other day to say that when she called Pegasus to talk about his medical records they have no idea what she was referring to with this bone concern. They have no record of this and now we are all left spinning our heads. Did she dream it? We have no idea...but we do know God wants him in our family!  

Where is Marz going to live...? The story keeps getting more and more amazing.  Our lovely friends who give Tirzah lessons will be keeping Marz there in their stable until our place is built and ready for him.

He comes Wednesday to us and we cannot wait!

When we visited Marz, Dean got this cute shot of Nazara showing her fun personality with Mommy :)

Monday, April 14, 2014

Defining moment.

Today I was chatting with a lady briefly who has a son with mental disabilities.  She sounded tired.  Exhausted.

She said something that summed it up pretty well: "with our healthy children, life got easier as they got older.  With our  gets harder as he gets older. Because he gets bigger, heavier, harder to manage. It's really...really...hard."

As she talked about her son...I have to mind started to dream a bit.  She was saying how he can only read/write at a kindergarden level and he's 10. And that's probably his ceiling.

Yes...right away my mind started to dream of Taizi. Read and write...? At any level...? That would be...amazing.

I shared with her something that someone once shared with me.

What if you stopped seeing his disabilities...and started seeing him as a way for you to love Jesus...?  Don't read that as a cute little christian-ese challenge that holds no weight.  I had to have a defining moment.  A moment...on my knees. With my heart crumbled into many pieces. the risk of leaving the scene for good.  Begging God for direction...answers...and just plain peace.  I live this. In all it's struggle.  This isn't easy.  Isn't natural.  Want to know what it is...? It is life changing.

The defining moment that removes all need for answers.  All need for clarity.  All need for happy skippity feelings.  It's not about that.  It's about loving Jesus.

I adore our children.  They are easy to love.  They receive love and they love back.

It's not a challenge.

There's daily growth and progress and there is definitely joy. hard.  He's hard b/c he's not on our track of moving forward. He doesn't go at our pace.  He doesn't comprehend...

You may not think you have "Taizi" in your life...but I think you do.  You have someone or something that could stretch you.  Could. loved them.  If you stopped and had that defining moment...the moment when you's simply not about you.

What if that's the secret...? It's just not about you.  And when you have that moment of might feel a little lighter.  A little free-er.

We just moved this last weekend.  Tomorrow we go back to Seattle Children's for surgery for Taizi. His infection isn't going away and they want to operate on it.  So while he's out they will do ear tubes as well.

It's simply not about me.


Thursday, April 10, 2014

Thought we were all in the clear...

days of oral and topical antibiotics, keeping in contact with the plastic surgery team in Seattle and everything looked great on Taizi's ear...
until today.  I told Dean it looked a bit red and swollen and so he pushed on it a bit and Sorry I'm not the medical one and ickkkk it was pretty intense what came out.  So I'm thinking this can't be a good thing that even with all that's re-infected.  :(

Left message with the team in Seattle and will talk to them we move :) Ayyy.

Monday, April 7, 2014

Taizi update.

So he's been on antibiotics for a few days. I spoke to the plastic surgery department from Children's today and they said the plan was to watch it for a few days, discuss the culture of his infection and then decide if they want to go back into surgery to clean out the wound and re-suture.

Tonight as we were getting him dressed for bed, we took his shirt off and then saw lots of blood on his arm. Quickly looked at his ear to see that removing his shirt had popped the large bubble on his ear and it was gaping open and everything was coming out.  Not going to lie....yuck. I mean...lots of pus. It was huge.

We got him dressed to head back into the ER.

Dean took him and we were surprised to hear the plan. First of all they said they are no longer equipped to do any speciality pediatric surgeries locally.  Really...? And b/c he is a cardiac patient...definitely not. So all surgery would have to be done back in Seattle.

Next they said they definitely don't want to suture up where there is active infection. That leaving it open and draining is a good thing.  This wide scar won't be a big deal on his ear they said.  They also defended the weekend ER visit by stating that the complication of nerves near the ear would take several injections to numb the area...which would take longer and much more painful than just pushing on the area itself. That helped us understand why he wasn't given any pain relief.

The ER doctor told Dean "you absolutely made my night" when Dean showed him a family picture :)

So tonight he's home, in his bed, exhausted, on lots of pain med and antibiotics.  We never expected this huge swollen bulge to pop through his stitches...but it could be a good thing in the end.

Sunday, April 6, 2014

The big surgery!

So the big surgery for Taizi was April 1.  We went to Seattle early March 31st for hours of pre-op appts.  He was cleared to go for surgery for the next morning. We stayed with friends about 45min-1hour away from Children's Hospital.  So Dean and Taizi left at 5:30am to head in for surgery.  He was all checked in and good to go. The plan was to do several procedures. The biggest one being the palate repair. #2 getting ear tubes put in. #3 remove these infectious tracts he had on his ear and one on his neck. #3 Creating a eye duct in his eye that doesn't blink/doesn't drain.  Well...first no ENT showed up so no ear tubes and the eye doctor didn't show either so that didn't get done. A little frustrating since there's no surgeries in the near future for him so this means he has to have an entirely separate procedure to get these things done.

His surgery was longer than expected. About 4.5 hours.  The surgeon said it was just a hard surgery because his mouth was so tiny. Dean questioned him on that since it's normally done at 10m-12m not was his mouth tinier than that...? He smiled and said they thought the same thing...however Taizi's mouth is tiny and his tongue is not tiny so it made it very difficult.

They make the palate using 100% soft tissue in his mouth...yes you read that right. They take the tissue from inside the gum line and make a palate. Then at the back of the palate they dig in to find the muscles that never were attached and pull them together. This is done so that if Taizi ever spoke...he would need those palate muscles in place for proper speech. This is where we put the disclaimer in that he's totally deaf. :)

He had to spend a few hours in recovery and when we got to see him he did not look good. He was so pale we thought he looked green. He was definitely looking distressed. I held him in my arm in his crib and he laid back and went to sleep. The nurse said he lost a lot of blood...5oz...which she said was  lot for his size. That's why his coloring was so off.

He settled and slept a long time. Thankful for good pain meds to keep him really pain free. He had a great evening and night and the next day was already looking much much better!

Ready to go home!

Amazing how you can have your entire mouth reconstructed and not quite feel it yet. But we were thankful he couldn't.  

So this tract he had removed from his has oozed since the day we first met him. I've mentioned a few times this odd smell that Taizi has that the doctors have been baffled by.  We have done every test to figure it out but can't get it. The smell can be so strong that you can't get it off your hands or clothes.  Well, his doctor recently mentioned that it smelled like infection. And since this sore is always oozing and the smell definitely is worse at his head level she wondered if this could really be it! We were hopeful.  

Two days after he came home...the smell was so bad. The worst we had ever experienced. Feeling a little disheartened that this was operated on and clearly not the cause...Dean went to hug him and Taizi completely freaked out. Really truly...freaked out!  I mean he cried so hard we knew something was terribly long.  We looked at his ear and It was so grossly swollen .. I mean clearly clearly infected.  We bathed him and I called the on call plastic surgeon in Seattle.  He said he needed to be opened (the surgery site) and scooped out.  Ayyyy.  

Dean headed in to the ER last night with him as I put the kids to bed.  Well...the good news is from entrance into the ER to exit was less than an hour (...coming from Canada...that's crazy!) but the bad news is ... it was a little "barbaric" as Dean would say.  They took the tape of the incision and then concluded the stitches were not visible therefore gone.  (they are dissolvable).  So...they swaddled Taizi, held him down...and the doctor pushed on the swelling. Out comes pus....('s gross I know) and it's squirting everywhere. In this tiny tiny pin hole's squirting out like crazy. In fact...splattered all over Dean's shirt. I cannot even imagine the screaming that's happening as the bath hurt him like crazy. They didn't numb him...nothing.  That's ... sad. I can't help but think if we brought our healthy child in there they would have numbed him...?  Anyway...then he puts antibiotic cream on it, writes a RX and sends them on their way. 

So...I call the surgeon back and he says "ummm the stitches are on the INSIDE" and his tone indicated he was not impressed that the doctor just assumed they would be dissolved when he said it was much too soon. Second...he wasn't impressed they didn't cut him open to fully clean it out.  

So he suggested we give it a day or so with the antibiotics and call Children's Monday morning.  

Oh...the ER doctor said to Dean as he's pushing this out of his head... "wow...its smells really strong!" and Dean agreed.

So. All this to say it definitely got infected. And that he's being closely monitored and we'll follow up in the morning with Seattle. a side think this overwhelming smell has been there since we first brought him home in November 2012...and it was a simply fix.  We have done everything. All but daily anoint him with oil.  It really has been that strong.  Ahhh.  The good news is ... it seems our doctor was right and we should be able to have this completely cleaned out and gone soon. 

As for recovery from the palate surgery...he's on a lot of meds to keep pain at bay. Way longer than Azlan was when he had this surgery...but still...he's clearly in pain b/c we are forcing him to eat and drink.  This is the critical point where Azlan stopped eating and drinking and after several nights in the ER with IV fluids we were airlifted back to Seattle and admitted.  So please pray this doesn't happen and we can keep him hydrated. Taizi loves NOTHING more than that drink and he holds his cup...takes and sip and then won't even swallow it for quite a while so it's definitely hurting.  :(

Thank you for praying for him and us. We are glad to be home and doing well.