Thursday, May 31, 2012

{Making Progress}

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Progress is just so darn awesome to watch and even more spectacular to be apart of. I know people say all the time to us that they just can't even imagine going through some of the difficult things we have faced and then choosing to do it all again -- times two.  I realize that people will never fully understand unless they have walked in our shoes, but this little girl in these photos is a perfect example of just how we can do this again -- times two.  There is no greater feeling than being watching a miracle unfold right before your eyes.  Everyday I look at this child and I'm just totally blown away.  Every session of physical therapy I hold back tears, cause I'm simply overwhelmed with the transformation that has occurred in her little life.  To think that our one decision to say yes -- to say yes to Gods plan for our lives, made this all possible.  Wow.  Literally takes my breath away.

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Anyway, Angela is getting so very strong.  She is moving all around the living room on her back and she is moving fast!  The connection has finally been made that if she moves she actually goes somewhere and can get things she wants.  Because of her visual impairment this has been a huge struggle for her to learn.  But now, she can see a ball all the way across the room, decide she wants it and will go over and get it.  Big, huge, amazing stuff! 

Because of her new strength we have been able to make a few modifications to her wheelchair.  We are beginning to prepare her for her new chair by keeping the chair at a 90 degree angle all the times and to not use the tilt feature in the chair.  When Angela first came home she really needed the tilt as she has little head and trunk control.  She no longer needs this and since her new chair will not have this feature I figured we would begin now.  We also removed her arm rests.  I feel like this opened up her world a bit more.  Angela's tone throughout her trunk is both floppy and spastic.  She functions very well like this.  By opening up her range of motion she is now able to bend over and reach for things (mostly Jayden) then use her spastic tone to pull herself back up.  She does not do well with a chest harness.  We have been told by some PT's that it is important that she wears it so she can focus more on using her arms and not have to think so hard about her trunk -- this isn't how Angela works.  If you give her more range of motion her little body just functions much better.

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One of the most exciting changes is that Angela was given a new iPad.  People are amazing and we are so very thankful beyond what I could possible write here on this blog.  As a part of Angela's new IEP for school one of our goals will be to take a short video clip at the end of each school day allowing Angela, with the help of her classmates and aid to tell me what they did in school each day.  Since Angela will not be able to express it herself we will use the iPad to record it so when she gets home she can tell me by showing me her video clip.  I have another mom to thank for this idea -- very excited about it.

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Angela communication skills using the My First AAC aap have skyrocketed.  This girl loves to talk and when her talker or iPad is not within reach she get very mad and will hit her arm down until I either get it or tell her the battery is dead.  The one issue that I had is that when in many social settings people cannot hear her voice though the iPad.  Last week I purchased a speaker system that attaches directly onto the iPad making it louder so that her little voice can her heard -- after all she has very important things to say.

Love this girl -- love watching the hand of God so strongly on her life.  Love that I can play a small part in her story -- in her miracle!

Tuesday, May 29, 2012

{New Glasses}

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Last week we picked up Angela new glasses.  Angela's visual issues are very interesting.  When the average person thinks of visual impairment they normally think of coke bottle size glasses.  This isn't the case with Angela.  Her visual issues mostly stem from her brain damage.  Her Brain does not comprehend visual signals like the average persons.  She needs to look harder and actually make the effort to visually understand what she is looking at.

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Like I said last week, Angela's vision has done a complete 180 turn.  But she still obviously needs glasses due to her nearsightedness. Her actual eye's have gotten a little bit worse this past 6 months.  Her prescription increased a significant amount and her issues with her eyes turning out has also increased.  The increase in her prescription should help her eyes turn back in but eventually she may need corrective surgery to fix this.  You can see in her close up photos how her eye turns significantly out.

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What is interesting is that these new glasses and the new prescription has been a huge adjustment for her.  Her vision actually seemed worse at first, which makes sense since most of her visual impairment is within her brain.  This past week she has had to relearn how to understand what she is seeing, which should now be more clear and crisp for her.

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Although I loved her blue glasses, these red one are a close match.  I should add that Angela picked these glasses out.  Now that she is able to use her iPad to tell us yes and no things are getting rather fun with finding out just what this little girl likes.  I put another pair on her and she insisted that they were not the pair for her -- she kept hitting "no" when asked if she liked them.

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When I put these red frames on her and put the mirror in front of her face she lit up with a huge smile and said "yes" like a million times. So cool to be able to know what her little mind is thinking and wanting!

Wednesday, May 23, 2012

{Embracing The Process}

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Life is all about process. We as a culture want everything fast -- we are an impulsive people group.  But truth is very rarely does a good thing happen without a process preceding it. These past weeks have been so difficult with Jayden.  There are certain behaviors that he has that developed as a result of his first two years of life that we are determined to help him overcome.  These behaviors are self harming and really hold him back from reaching his full potential.  We dealt with some of the same behaviors with Angela, and I think these behaviors are probably pretty common with kids like Angela and Jayden who seek sensory input and are not able to find in their environment.  

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It's so easy for us to just want to snap our fingers and fast forward -- but that's just not how life works. It's in the process that amazing things happen.  It's so important to live in the moment and not always be wanting and hoping for the future -- we will miss out on so much!  Its though our sweat and tears that amazing bonding will happen, growth will occur and love will deepen.

I know for sure God delights in process.  It's during our times of waiting that our need for him is most seen.  I feel like sometimes He even makes us wait longer, and maybe even with a smirk on his face,  just to get us off our high horse and recognize that we simply can't do this thing called life on our own. When will we learn?  When will I learn?  As I said in a previous post -- I was never meant to do this alone.  

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Jayden is teaching me so much about myself, forcing me to slow down, reorganize and re-approach.  Being a mommie to both birth and adopted children requires me to think outside the box.  What works for one child will not work for another.  In some ways it gives me this huge arsenal of strategies because all my children need different approaches.  

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I feel like I'm rambling on, and I guess I kinda am.  I needed to hear this today.  I need to be reminded to embrace the process.  Good things are right around the corner, but if I focus so much on the future I might miss out on some amazing moments happening right now.

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**sigh

I'm embracing the process.

Friday, May 18, 2012

{Children First}

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I am so excited to send Angela off to preschool in the fall.  For most kids preschool really isn't that big of a deal, but for Angela is signifies something huge -- something bigger than I can even wrap my mind around.  With the excitement of the endless possibilities this school year will hold, also come lots of planning -- the part that's not quite as exciting.  

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I'm waiting to hear back on a date to have Angela evaluated for her IEP.  Since Angela didn't receive any services this past year we will need to start over as if she never had an IEP.  For those who are new to this story, we decided to reject Angela's IEP last year after the school district was not willing to compromise on the number of therapy hours they wanted her to receive.  Basically, they wanted more and we wanted way less -- we wanted her to have time to be a three year old and enjoy life.  Since they were unwilling to work with us, we decided to not do services through the school district.  Let me tell you -- this was the best decision we ever made.  It's not for everyone and oh, did I get lots of mean comments about our decision, but looking at Angela now -- I'm so proud that I stuck with it and did things a little different.

This year she is ready.  I have no doubt.  Last year I felt so uneasy about her IEP meeting -- this year I've got big plans and goals and I'm excited to get them all together -- to let Angela's needs be known and help the district help Angela reach her full potential. 

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Two weeks ago I received paperwork in the mail that needed to be filled out prior to her evaluation.  I about freaked when I got it.  It basically was three standard questionnaires.  I hate questionnaires and feel that no child should ever be defined using standardized norms.  After all, what person on Earth is really normal? Who gets to decide what normal is?  I sent them all back blank.  I know they are simply a tool the school uses, but I refuse for my children to be defined on paper.  According to that questionnaire Angela would score with little to no function.  Although they say they don't look at those until after actually seeing the child -- I don't care.  They will learn about Angela's awesomeness when they see her in person.  It's just the way it needs to be -- it should be that way for every child.  

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I look at my children and I see children first.  I see two beautiful little girls who are smart and have so much to teach and show this world. I see a little boy who has fought so hard to survive and who is busting out of his shell that has held his little mind and body captive for two years. I refuse to let anyone see anything different.

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I'm excited to walk into that evaluation room and show them that us Owens' do things a little different.  I will choose to be open minded and teachable and will demand that the same respect is returned.  I'm excited and confident because the past two years of hard work has paid off.  Like I said in previous posts -- I refuse to hold my baby girl back.  There are risks, but they are worth taking.  Angela deserves autonomy -- a chance to become her own little person to live her own life outside mommie, but rest assured mommie will be right behind her pushing and cheering her on.

I look at Angela and see a child first.  Those silly disabilities mean nothing -- they just make life a bit more interesting!

Monday, May 14, 2012

{Motherhood and Random Field Hockey Photos}

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I'm not a good mom.  Ok -- I guess I need to explain. When I was a little girl I didn't play house or play with Barbies -- actually, I was Barbie's worst nightmare.  I could pop a head off in a second flat.    I never imagined I would ever get married -- never really dreamed of my wedding.  So needless to say, four months into our marriage, when we found out that we were expecting our first little girl, Madison, I wasn't exactly prepared.  

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But now seven years later, I can proudly say I'm not a good mom.  Again, let me explain. You know those mom's who just have preschool flowing through their blood?  The ones who think of daily crafts and activities to enrich their little ones minds -- that's not me.  Motherhood just doesn't come naturally for  me.  But what I have learned is sometimes the best mothers are the ones who admit they are the worst.  Mom's like me make daily choices to be intentional -- to step out of what feels natural and trust that God would use us in the most powerful way to grow our children and pour into their lives.

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During the times where I can see and admit my weakness as mother -- it's during those times where I feel the most powerful.  It just takes an awful lot of pressure off me.  God never meant for us Mom's to do this alone and I can guarantee you that I'm not the only Mom who loathes the thought of play dough, finger paint and other preschool novelties.

In my weakness He is made ever so strong.

Thank God.

Seriously.

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Mother's day is always pretty interesting around here.  Brings up lots of emotions for me.  Lots of pauses where I sit and wish all my babies where here on Earth, available to squeeze tight.  But God always seems to meet me where I'm at, help me feel the pain and point me back to that feeling of deep Hope and Joy.

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I can't help but wonder and hurt for Angela and Jayden's birth mother's.  A mother is always a mother no matter what choices are made.   And although it is very easy to feel anger towards these women, I can't help but grieve their loss of their amazing children and at the same time feel the deepest of gratitude for giving them life. 

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Anyway -- I couldn't thank God enough for making me a mom -- the perfect mommie for my babies.  I'm so grateful to walk this journey with full confidence that I was never intended to do it alone. 

Friday, May 4, 2012

{Angela's Eyes}

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I know I repeat myself so many times on this blog but seriously -- Angela is amazing.  It's kinda funny 'cause with our family's process of switching home churches we have met lots of new people who never knew the old Angela.  We go on and on about how amazing she is and how much progress she has made -- they probably really don't get it.  I resist the urge to pull out old photos and show the crazy transformation that has taken place -- it's difficult, but never the less so far I have resisted.

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This week I took Angela to the eye doctors.  Again -- amazing.  Angela went through the normal exam and at the end I had the most amazing conversation with the doc.  She proceeded to tell me that one year ago -- and she pulled up her notes in the computer -- she notated that Angela had little to no functional vision.  In Today's exam, Angela's visual impairment was hard to spot.  It's certainly there but compared to where she was one year ago -- holy cow -- Amazing.

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I remember the day when all Angela would do was seek out a light source and stare off and self stimulate herself.  She would arch her back in such a forcefully manner to seek out the light -- it was really an phenomenal behavior and way to self stimulate.  This behavior is no longer seen -- ever.  Occasionally she will get sleepy and stare off, but most kiddies do.

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Then there was the sneaking in her room.  When Angela first came home there were a few self-harming behaviors that she would do that we worked very hard to stop.  When she would lay in her crib we would stand in her room and observe her and try to catch and correct the behaviors.  She would never have any clue we were there.  Lights could be on -- we even could be making some slight noise, and she would never notice our presence.  These days she spots us from all the way across the room -- there is no hiding or trying hide things from her line of vision.

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Recently she started a new behavior -- one that shows just how good her vision is.  She has began to turn hear head around to be nosy and look at people behind her.  Physical therapy has been a mess lately cause half the time, while in her gait trainer, she is desperately trying to turn her head to catch what the other kids are doing.  Can you say rubber-necker?

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Amazing.  This girl blows my mind.  But then again should I really be surprised?  We serve a big God who is more than capable -- more than able.  Love Him.  Love her.  

This journey is amazing.

Wednesday, May 2, 2012

{Renewing my Strength}

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This past seven days brought on a whirlwind like no other.  Jayden has been struggling with some aspiration issues for some time now and this past week it finally caught up to him.  When we originally brought Jayden home he was doing great medically.  But two things happened that seemed to create the perfect storm.  The first is that the medicine that Jayden takes to help dry up his oral secretions, or drool, has lost all effect on him.  Since Jayden has no swallow due to his brain trauma, whatever he does not drool out his mouth goes down into his trach and lungs.  Normally since Jayden moves so much and has a great cough he seems to manage this rather well, but lately the volume has been just nuts and even him, being the mover and shaker that he is, is having trouble handling it.

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Jayden did receive Botox two weeks ago but is was a fail.  Sadly we have seen no results which was such a major bummer.  The second issue is that some time over the winter Jayden's Fundoplucation came undone -- another really major bummer.  When we would go for visits in December we would notice a small little puddle of spit up on the floor but the docs didn't seem to be worried about it.  Over the past few months the small puddles have turned into much more and now we are seeing refluxed formula going down into his trach and most likely his lungs.


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To make matters worse, my biggest nightmare concerning Jayden's lack of intact fundo came true -- he got a stomach bug.  On Friday Jayden began to vomit full force and began to really struggle to breath since tons of puke was going down his trachea.  We took him to the ER where they confirmed with xray that he does indeed have aspiration pneumonia.  Thankfully we were able to bring him back home.  The ENT and ER staff decided it was best to keep Jayden's trach inflated, which basically is a little balloon on the trach that kinda seals off the upper airway preventing anything from going into the lungs.  With his trach inflated full time his O2 saturations are back to almost perfect, the best we have seen since bringing him home.  So now we wait to hear some type of plan from his docs, which unfortunately seems to be more difficult than easy.

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Then there is Miss Angela -- obviously feeling jealous of her baby brother.  For the past month Angela has begun to not tolerate her feeds at night and the poor girl has been waking up in a puddle of vomit.  She is not gaining weight and her hydration is not the best.  So our plan was to try to place a GJ tube which would bypass her belly so she would not be exploding at night.  No such luck.  The team was unable to place the tube as her belly is showing no motility at all, and the pylorus, the opening at the bottom of the stomach, would not open to allow the J portion of the tube to pass through.  So, instead of Angela getting her Adenoids out on Friday which was previously planned she will go to the OR on Tuesday to try to take a look at what is going on and to manually pass the tube down using a guide wire.

Phew.  I'm tired how about you?


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All this is crazy and it's keeping us very busy but my main point of this entire long, over detailed post was to say one thing.  I can't do this on my own -- and I need to remind myself that on a daily basis.  I often feel like God is just waiting, hoovering behind with this magic wand just waiting to grant me super mommie powers, but He needs me to stop, turn around and recognize his presence in order to blast me with the extra boost I so desperately need.  Is it wrong to be thinking of God in a tooth fairly like form? Cause that's what I got going on in my head right now.  

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This week He once again reminded me that I need to stop, take a deep breath and renew my strength.  Easier said than done since so many of us mommies feel the need to just keep going -- our mommie tunnel vision kicks in and we so often forget that God is just waiting for us to take a sec, recognize him and he will give us the strength we so desperately need.