Saturday, May 11, 2013

Some days...it's more chaos than peace.

Now I have to explain that statement.

Our kids are amazing.  Truly amazing.

Taizi is hard.  He really just is.

He is NOT hard if you let him just sit and do nothing. Eat baby food. A bottle and never ever attempt to walk or move.  Or do anything he doesn't want to do.

Yet we cannot.

We have made progress yet he seems to do 1.5 steps forward and 1 step back. Frequently.

Going away for 5 days definitely had it's effect. We anticipated that.  But it's not that fun for the rest of us.

He almost refuses to walk.  We do it...but he screams like you are torturing him.  The therapist in Seattle said he 100% has the ability and 100% lacks the motivation so she wants us to keep going.  We also know that we can accomplish things so much faster than therapy can just due to time.

He MAY (we would debate that) have the physical ability to walk...but he definitely does not have the desire or motivation. Isn't that half the battle...?  When your baby is learning to walk...they WANT to walk. There is that desire to be independent. Not in Taizi. :(  So it's hard.  He screams like crazy and we walk around the kitchen with him.  And...he will go totally limp so he doesn't have to.

Then there's food. We've started on mildly chunky food.  Like a mushed up banana.  Yes...it's chaos.But in good news it was chaos getting him off his bottle. And it was chaos getting him to eat from a syringe. And it was chaos getting him to eat from a spoon. And it was chaos getting him to eat foods other than sweet potatoes and bananas.  But we did it.  So of course it's chaos taking the next step.

Regarding sleep we are figuring out that he is indeed trashed at about 5pm.  In fact, the last few days I was out with all the kids at that time and he fell asleep in the car (which he never does!).

He hates his glasses and rips them off every 30 seconds if we don't see him.  Speaking of glasses, we did just get a new pair...in white. So he has blue and white :)

We let him eat his bottle on a chair (sitting up) like a couch or big chair in the living room. Then every time he turns around and slithers off the chair. Well since we came home ... he will not. In fact, he sits there and screams for you to get him off the chair. Soooo he has definitely regressed in that area and I would say also in the walking area. He hated it but not like he does now.

All of this...has got us wondering...if his severe reaction to the rehab room in the orphanage...was not due to abuse...but perhaps due to him being pushed to stand, crawl, walk etc and things he didn't want to do.  Obviously we don't know but we wonder. Now that we see how he reacts to be made to do anything progressive...it's really the same.

We went to Seattle for ENT for Zihao, Taizi and Azlan last week.

Azlan's update was great. It was the first time a doctor has had an answer. He first of all blatantly disagreed with Dr. Husein in Spokane that Azlan is 1 in 100,000. He laughed actually. He said this is what he sees sooo frequently with Baha implants.  Inflammation. Hair follicles no longer present.  Swelling. Consistently.

He likened it to a Tracheotomy. He said whenever there is something protruding out of the skin...then everything and anything ... the slightest dirt, sweat, bacteria is going to cause a problem.  Period.  He said the care of a BAHA is intense.  It takes daily ointment, cleansing, brushing around the abutment etc.  We have NEVER been told this. He gave a RX that will even kill MRSA. He said he has to shower daily and apply it daily. Then he gave an ointment for when it does get inflammed.  When I asked about him being allergic etc...he said no...it really is infection but not deep infection. Just skin infection from normal skin bacteria.  However he doesn't believe oral or IV antibiotics help it. It's all topical.  So we are going to do this for 2 months and then see him again.  He said with an implant like this it's all about weighing the pros and cons.  He said he has MANY families lined up waiting for the Sophono implant b/c they refuse the "nightmare of the BAHA".  Good to know. No one told us! :(

Then Zihao.  We did the behavioral audio exam where a frequency is sounded in each ear canal to see his response.  In BOTH ears he responded at 40-50decibels.  I was floored. If you see the way he leans his head and favors one ear...you would be too.  The good news about this definite hearing loss is he has significant fluid in his ears. So on June 15 he will have tubes put in then we will do the test again and see where he is.  I'm still in shock that there's no single sided deafness just with his behaviors! GOOD NEWS!!

Then Taizi.  He just reviewed his CT scan and made a plan.  Things don't look good for Taizi there's no doubt but we are going to give every chance we can. So he will have tubes put in, hopefully with palate surgery then we will do the ABR sedated hearing test and see. If he has no response at that point, things are a lot more conclusive.

Regarding Cochlear implants which many ask about...it's unlikely he would be a candidate even if it were proven they could help him b/c you have to be trained to interpret the sounds with a cochlear implant and you have to have that cognitive ability. ...

That was it! The next Cranio Facial is for June 17 for all 3 boys and we'll know more about surgeries etc at that point.

Likely having a baby the end of June we are trying to get as many of these big appts out of the way first.  Though...it's not like they will slow down :)

Going back to our amazing kids...yesterday I had an appt for Azlan with the ped. Dean was working and so I took all 9.  It was 94 degrees yesterday (!)...we got out of the van and walked up to the doc's office.  I took the three little kids with me (well not really) it was Azlan, Zihao and Izrael and the other 6 stayed in the playroom reading books.  When I came back out the receptionist's eyes popped. She said "where were those 6 children???" I said "right here!" She said "You don't understand, there was not ONE peep, I didn't know anyone was in the waiting room!! That's amazing" and I turned to the kids and said "you guys rock and they all jumped up to give me high five. I think she was most amazed by the life they had once we were leaving. They have so much life and spirit...but know when to sit and control it. They are awesome.

And really...they all are.

Last night I got on my hands and knees to wash the entire bottom floor...floor.  I knew it was a bad idea. At 33 weeks pregnant...you know but...I wanted it done. :) SO I did it. The kids were outside cleaning the yard and Zion was inside helping me.  He disappeared for a long time. When I was done I looked up to see this MASSIVE poster taped to the dining room wall. It was beautiful. All rainbows and then there was Mommy and Zion in stick figure style. Written above it was "you are the best mommy in the world".  When I asked why he did it he said "because you have a baby in your belly and yet you work so hard. You rock".  :)

Every ounce of this parenting is worth it. Every bit.

Driving to Seattle the other day we turned on "It's Good to be Alive" by Jason Grey.  All of a sudden the  van erupted into noise. Every child minus Taizi, bellowing at the top of their lungs. "All I want is to give you a life well lived to say THANK YOU!" and how could my heart not smile.

Seriously.

I choose peace.




1 comment:

  1. Zion is so right! Happy Mother's Day dear friend :) Thank you for choosing peace. God's fruit and blessings can flow through that and then beyond.

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