Hoping to someday find M's brother adopted in the U.S. -
Myckola Oleksandrovych Markov - 8/26/2003

Sunday, July 31, 2011

We have a fish!

We've been going to the pool fairly often this summer.  When we first took Mariah, she could not keep her feet from floating up in front of her or behind her.  Her muscles were so weak that even with water wings, she couldn't control her lower body so we had to watch her really carefully because her legs would float up and she'd be face down in the water!  I worked on teaching her to roll over to her back when her legs floated up so she could breathe.  She loves the water and just floating in it keeps her legs moving and works her muscles out.  As you can see from these pictures, she has gotten much stronger!  When I took the 3 kids to the pool on Friday, Mariah decided to just stick her face in the water and swim!  I was scared to let her go out of arms reach cause she goes under and holds her breath for at least 15 seconds sometimes (count, its a long time for a little child!).  She also is pulling herself up out of the pool and onto the side so she can "jump" back into the water.  A lot of her floating is facedown in "deadman's float" style but today when we went back to the pool, she was really kicking and moving her arms to get around.  She loves to swim so much that we have to make her rest because she will gulp and snort the water without stopping to take a break.  When I told Phillip on Friday that Mariah was SWIMMING at the pool, he was like "Oh yeah... that's cool."  I was all like "NO! She's really swimming!"  The kids insisted that daddy come to the pool today after church so they could all show him how they put their heads underwater now and he got to see that yep, Mariah is really swimming!  She raised the bar for her brothers who are now in awe of her and want to be like her for a change :)

Monday, July 25, 2011

Reeeeach for it!

Ta-da!  I can upload more than one pic via phone now! 

Mariah has made great progress with stretching and not only is she not screaming, crying, or clawing anymore (most mornings lol) she is willingly participating.  Just the fact that she isn't tensing and fighting the stretches means she is working on what is actually tight.  The result is that the only major tightness is now in her ankles... well and one pesky hamstring.

Friday, July 22, 2011

Its a heat wave

Whew!  We have a heat index of 115 degrees today.  Its brutal! 

Here's a list of quick updates...

We've been sick.  Phillip is really sick with an inner ear issue and on several different meds.  If it doesn't resolve he has to go back to the Dr and we'll decide something from there.  Of course he's still working in the aforementioned heat.

Mariah spiked a scary temp of 103.7 and kept it with tylenol and ibuprofen for 24 hours before coming down to 101 for another day then finally close to normal today.

Wes is not sick. At all.
Wyatt wouldn't eat for a week.

I thought I was dying for about 12 hours but ended up with just a really sore throat and some nasal congestion.

The IRS seems to have decided to adjust the amount of our refund and sent us some papers to sign...  hopefully this is the light at the end of the tunnel. We really need that money.

Mariah's eyepatches that I ordered got lost.  This is cracking me up.  Ortopad makes these patches.  They are in Arizona.  Evidentially they have issues with using" mail innovations" for shipping to the East Coast.  They know this but use them still... well the package got misrouted somehow.  They say the postal service says the package is somewhere in VA but don't know where exactly.  So ortopad is overnighting a new order to me but if by some chance the post office delivers the other package first, they want me to refuse the overnighted one.  Really?  This was supposed to be simple...

Its supposed to be 100 degrees tomorrow as well and Wes has "baseball day" to finish out t-ball.  There is supposed to be ice cream but it will probably be slush cream in this heat lol! 

The kids and I spent the day inside doing crafts.  They had a lot of fun and silly me... I brought out the fabric paint and t-shirts cause glue, scissors, and paper wasn't enough.  Wes made a" birthday cake" on his shirt.  I suspect it MIGHT be dry by the time he has his next one.  He laid bottles of paint down and hit them with his fists to produce "fireworks."  I got stabbed in the eye with a paintbrush and Wyatt just rubbed piles of paint around on his shirt because the spider I painted for him was "too scary" so no more spider...  now when they want to wear these shirts in public I'll wonder what I was thinking all over again.  Well, except for Mariah's.  She was happy to direct me in painting her shirt. 

Sent via DROID on Verizon Wireless

Monday, July 18, 2011

A first.

This picture marks the first time EVER that Mariah has fallen asleep in her carseat. 

Sent via DROID on Verizon Wireless

Sunday, July 17, 2011

Finally - the MRI update

Mariah had her MRI on July 1st.  That was a loooong day full of arriving to the hospital early only to find out they were running late and then finding out that instead of Mariah being sedated via IV as I had previously thought, that they were giving her a liquid to "help" her fall asleep.

They said the medecine could have an adverse affect and cause her to "rage" (OMG??) and that in some kids it caused explosive diareah and in that case, we couldn't leave the hospital until she quit having that...  oh and it could also cause her to throw up either when she took it OR in the MRI machine. 

Sweet. 

Now I can't wait to sign the waiver form!! 

Oh and in the off chance that she doesn't go to sleep, cause ya know this medicine is best for kids 2 and under and well no one seemed to realize she is almost 5, then we'd have to reschedule and come back another day cause on that floor, the staff wasn't qualified to sedate her via IV. 

Yep, I had scheduled an entire day around dropping Wes and Wy off at their grandparent's and keeping Mariah from eating anything and drove to the hospital to hear all of this.

Then once she finally took the medicine (and didn't throw up thank goodness!) she wouldn't go to sleep!  The nurse kept checking on her every 5 minutes to see if she was asleep yet and it was SO annoying.  Here we are in a little tiny room with people being VERY loud outside of it and the lights were on in the hallway.  I was like HOW do you expect her to go to sleep??  I mean really, guys c'mon now?  Every time she'd lay down and kind of quiet down, he'd open the door and "check" on her which really meant he'd make her sit up in the bed and see what was going on.  I was on the verge of tears all day.  I don't know why I was so emotional but boy I was!  I almost cried when I left the boys at their grandparents.  I nearly cried cause I couldn't find a parking spot...  and then sitting in that room for hours with Mariah waiting... and waiting... and then finally they gave her the medicine and she wouln't go to sleep.  I was ready to flip out big time if they told me they couldn't do the MRI cause really, I didn't want to go through all of that again. 

Finally --  she went to sleep.  It took nearly an hour!

Once she was out they wheeled her into the MRI room and gave me a pair of earplugs.  Evidentially MRI machines are very loud.  Oh it was VERY loud and very mechanical.  It sounded like something off of Terminator for 30 minutes.

Once we were all done with the MRI, they tried to wake her up.  They kept telling me she shouldn't eat solid foods for a while and to be careful with liquids.  Well guess what the nurse brought her?  Juice and cookies... 

Yep. 

She might have diareah as a side affect, but we'll give her 16 oz of apple juice JUST to make sure she gets cleaned out.

Then they told me that she would be clumsy, might fall a lot, and would need to hold onto someone's hand to walk the rest of the evening.  By then I was just tired of no one knowing anything about her so I was like "whatever" and threw away the cookies so she wouldn't choke and we left.

She was pitiful.  The medicine made her an absolute limp noodle.  She couldn't stand, she couldn't even sit up without her head falling over.  She slurred her words like she'd had a pint of vodka and when she tried to crawl, she just splatted.  That didn't stop her from talking though.  "Muuuhmaaaa, I waaaeenna gaw tew NiNi's haaawse an see Wesley ee Wyatt."  and all the way home in the carseat she sang "NeeeeNeeeezzz haaaawse.... I'm goooiiiingg tooo NeeeNeeeezzzz hawwse."  Yeah it was THAT bad lol

The nurse did mention that since it was a Friday, we should have the Dr. call with the results by Tuesday, the 5th.  Well Tuesday came... and Tuesday went.  So I called on Thursday and got a machine on which I left a message.  I also called Radiology to confirm that the Dr. did have the completed report.  Yep he did.

So I got message on my cell the next day from the assitant to the Dr. saying that she didn't have anything from the Dr. to tell me.  Nice.

So I waited a full week till next Tuesday and I called again.  This time I got the assitant in person and told her I wanted the report.  Now.  I was really nice, but seriously, I want to know what THEY know about my daughter's brain.

About 30 minutes later an older lady called me and all she said was that Dr. had noted that Mariah's MRI looked like a typical child born at 29 weeks.  She has some white matter damage but its static (meaning it won't get better or worse).  Typically this is from a lack of oxygen at birth.

I asked her if the Dr. was going to go over this with me in more detail?  She said I'd have to make an appointment... hah!  At $400 a pop?  No.  That's ok.  If he isn't concerned about it, I'm not going to pay to hear him say it in person.  Buh-bye now :) 

A lot of people in the medical field seem to be like this about kids with CP.  They have this "It won't get better or worse" attitude and just seem content to not really DO anything.  I don't get it...

So this was Tuesday.  On Monday (the day before Tuesday) Mariah had an opthomologist appointment.  I had wanted the MRI results for this appointment just in case there was something significant but it turned out that Mariah's eye issues aren't as bad as we had thought.  The opthomologist had thought she had severe vision issues (as in couldn't see) but when we went back, she read the 20/40 and 20/50 lines just fine.  He said she doesn't need glasses because that will most likely improve.  The reason it will improve is that she has amblyopia (vision loss in one eye) and we're patching the strong eye to make the brain use the weak eye.  She had a crossed eye that her brain was "turning off" and only using the stronger eye.  Its not noticeably crossed now, but it her brain not using it has caused vision loss in it and in her overall vision as well.  A child under 9 has the ability in their brain to relearn how to use a weak eye so by forcing her brain to only use the weak eye for a few hours a day, we are making that part of her brain "turn back on" and it will make her overall vision improve.

What's funny about this is that I had nearly this exact problem in the same eye when I was a child.  Mine was more involved as I had a growth on my retina that caused the vision loss and nothing could be done about it outside of a risky surgery that could have caused total blindness in that eye.  So I have permanent vision loss in my right eye.  Hopefully Mariah's will be completely resolved :)  We're also seeing the same specialist that I saw as a child.  Its funny how a medical problem can be a confirmation once again, that this is THE child meant for you :)

Mariah also has overactive muscles in both eyes that will need to be relaxed, but the Dr. wants to wait a while before we do that.  Again, I had the same surgery twice as a child... its a genetic condition that I was told to watch out for in my bio kids, but neither of them have it.  We adopted a child with the same eye condition I had.  Only God...

After the eye appointment, we went to the orthotics department to have Mariah's AFOs adjusted.  She had been getting red marks on the back of her legs so we wanted to see what was going on.  The orthotics guy is SO nice.  I wish everyone was like him.  He treats Mariah like a real person and talks to her, not just over her and about her, but TO her.  He said she had gained some weight and muscles in her legs so he re-heated the braces and flared the backs out some to accomodate her "meaty" legs.  (seriously they aren't meaty... they look like toothpicks)  I talked to him about what he thought of Mariah being a candidate for articulated AFO's (they have a hinge at the ankle) instead of just the solid ones she has now.  He watched her walk and said that she was probably a good candidate but would need a new prescription which means another Dr. appointment...  so we'll probably wait till October when we have the next round of appointments anyways.  She is still gaining confidence in walking by herself.  Most of the time after about 15 steps, she throws herself down on her knees.  She isn't falling, but throwing herself down.

So... that's the medical update.  Sooner or later I'll post a family update with bonding and emotional updates.  We've survived the first 6 months and seem to be making great progress with bonding (finally!).  Most weeks it feels like 2 steps forward, 1 step back.  I keep telling myself though that IS progress!  She doesn't regress all the way back or for as long anymore either.  So the "bad" days aren't quite as bad as they used to be.  I think my fellow adoptive parents know what I mean by that :)


(I'm thinking of removing the auto publish feature that publishes this blog to facebook.  I've been thinking of doing this for a while now, and have my reasons.  Please make sure you have the blog address saved to favorites so you can still read it if I decide to do that. I'd hate for anyone who really enjoys hearing my heart to "lose" my blog, but these days I just don't know if I want it popping up in my newsfeed anymore.)

Watermellon!

Mariah and Wyatt LOVE watermellon! 

Sent via DROID on Verizon Wireless

Saturday, July 16, 2011

Friday, July 15, 2011

New Haircut

Mariah's hair still has a lot of new hair growing out so we had it trimmed shorter one more time to try to let it all catch up and be more even so it can grow out long without looking ratty.  It looks so much thicker now!

Sent via DROID on Verizon Wireless

Thursday, July 14, 2011

Mariah aka T-Rex

Mariah is still a bit obsessed with being a t-rex.  Probably because her brothers are as well...

Here she is eating chips and chatting away.  I wish I could get her to talk to me on camera like she runs her motor mouth the rest of the time!  I can't believe how awesome her English is.  Its like she's been here all along, but I can tell that she is still re-gaining her expressive language.  She pauses and stops to think for the right word to say what she wants a lot.  Somewhere around 9-12 months home she should have a complete hold on English and as she used to say when she first came home "Oy!"

Monday, July 11, 2011

Opthomology Update

Mariah does not need glasses, but we do have to patch 2 hours a day to strengthen her weak eye.  She will need surgery on both eyes eventually but not for now.

Sent via DROID on Verizon Wireless

Thursday, July 7, 2011

17 grams of protein

Barilla Plus pasta has 17 grams of protein in 1 cup of uncooked pasta.  Mariah loves pasta so I made it 2 ways tonight and she is gobbling it down.  Protein and omega 3 oils are key to brain function so I add ground flax seed to her smoothies and try to feed her protein packed meals. 

Sent via DROID on Verizon Wireless

No pockets. No problem.

Mariah loves to help me in the garden.  She LOVES veggies and always wants to help carry them down to the house "All by myself!"  Well...its hard to carry something when you use a pediatric walker, right?  Nope.  Not a problem for this girl! 

Sent via DROID on Verizon Wireless

This is how she sits these days...

Just to watch TV.  She couldn't even sit up 6 months ago.  Now she chooses to sit and watch tv like this.

Sent via DROID on Verizon Wireless

Hair today



Sent via DROID on Verizon Wireless

Tuesday, July 5, 2011

Bed head before bed?


She thought her hair was hilarious!  I'll be honest.... I did too :-D


Sent via DROID on Verizon Wireless

50% more calories?

I just read a blog post by someone else with a CP kid that stated that CP kids need 50% more calories than regular kids becaue their muscles work so hard from being spastic.  Is this true? 

Not a single Dr. ever mentioned this.  Mariah was by far the most malnourished looking kid in the orphanage and we wondered why the other kids looked like they ate more than she did.  She eats super slow... so maybe that's why.  She had no appetite when she came home either.  But if she is burning more calories AND not getting enough to eat, well that would explain things.

She is really underweight for her age even though she has gained 3 1/2lbs since coming home.  She only weighs 29 1/2 lbs at nearly 5 years old.

She also takes Isoniazid that requires her not to eat for a 3 hour period.  If she needs more calories, I would have NOT started her on that right away like we did in order to pump her full of calories all day.

Becky, Erin, Ellen, do you guys give your kids with CP more calories?  I try to give her extra anyways so she can gain weight but its hard to get her to eat sometimes.  We saw several doctors who never even seemed concerned about how underweight she was let alone tell me to feed her more because of her CP... ??

Saturday, July 2, 2011

Flipping off the sofa

Mariah had an MRI yesterday.  That is a post for another day but we did get it done and we should have the results back by Tuesday.  I was an emotional mess for the day which was probably a result of being stressed out for the last 6-7 months, and never having a break or getting to go out and spend time with Phillip.  For over a year we hadn't been out by ourselves. 

We remedied that this weekend and I am realizing that I am just going to have to take a break in order to stay sane and be a good mama.  My kids are so much more adorable when I've had some time to unwind and talk to my husband without worrying who's screaming in the background or who might be peeing in the floor this time... 

Our babysitter hunt is on. 

Phillip wants to hire a part time nanny for the rest of the summer.  I on the other hand would be greatful for 2 hours a week cause well, its 2 hours more than I have now and we can't afford a nanny.  We really can't afford a babysitter but at this point we really can't afford not to find one. 

I'll write a post about the MRI later...In the meantime, here is a video of Mariah doing her latest trick.



She has come a long way!! 


We witness a miracle every time a child enters into life; but those who make their journey home across time and miles, growing within the hearts of those who wait to love them,are carried on the wings of destiny; and placed among us by God's very own hands. --Kristi Larson

 

ALL CONTENT IS COPYRIGHT AND MAY NOT BE COPIED OR REPRODUCED WITHOUT WRITTEN CONSENT OF THE AUTHOR. COPYRIGHT 2017