Wednesday, February 23, 2011

{Medical Updates and Photos}

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These photos were taken at the request of my beautiful Madison. We were looking though photos when we realized that we didn't take any birthday photos.  Ugh -- I win the bad mommie award.  So we went out and took some photos with her new guitar, which she is becoming best friends with.  She even has a blister from strumming so much, which she would be more than happy to show you and tell you all about.  I love my Madi beyond words could say.  She is such an amazing, unique little girl who makes me smile everyday!

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Anyway -- lots of appointments have come and gone and I though I'd take a moment to fill you all in.  A few weeks ago Angela was sedated for a ABR, which is a type of hearing evaluation where the brain is tested to see how it is receiving different sounds.  The great news is our Angela has perfect hearing, which we kinda already knew, but because her specific genetic disorder, 1P36 Deletion Syndrome, has a high incidence of hearing loss, we wanted to have her tested.

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This past week we also were able to meet with her neurologist and go over her history and also talk a little about her future.  Angela unfortunately have several strikes against her -- and if either one were her only issue it would make her life so much easier.  But the two issues -- the genetic disorder and the brain injury which caused the PVL and the cortical blindness, put her in a difficult situation.  Ugh.  The spastic quadriplegia causes her to have some tightness in her arms and legs and the genetic disorder gives her very low central tone, though her head control has made incredible improvements.  I talked with the Neurologist about what his thoughts were for her as far as her ability to one day walk.  He said she certainly has a lot against her but didn't rule it out completely.  Well this got me very excited!  I know she may never walk without assistance but I've got big dreams for her to be able to find mobility -- no matter what that looks like.  

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Angela has so much potential.  At first she can come off as not really there or just lacking in motivation and personality.  But that's just because she is trying to figure you out.  You just have to close your eyes and imagine what her world is like.  People will often be very nice and talk to her, but unless they touched her she may have no clue you are talking to her.  Once she takes in all the sounds of her world she is all personality.  She is so age appropriate in so many ways -- it makes me smile, and flustered on a daily basis.

We also talked about her seizures.  She has a seizure disorder that is a bit confusing.  Her EEG is a total train wreak. We still believe she is showing sign of seizure activity and will be doing a 24 hour ambulatory EEG next week.  Our neurologist said it was going to be challenging to figure out if what we are seeing is indeed seizure activity just because her baseline EEG is rather complex to begin with.  Either way we will probably adjust her meds after the EEG to see if some of the behavior is eliminated or not.  

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I just can't wait to see what Angela looks like one year from today.  She has made huge progress!  She is now taking a pacifier and holding it in her mouth as long as she likes.  Her innaproprite self soothing licking behavior is gone and she now has beautiful clear skin!  We brush her teeth twice a day with an electric tooth brush to help stimulate her mouth and also help with her oral awareness and although she is not a fan she does not gag or vomit.  She is sitting for very brief periods (seconds) in a tripod pose -- totally huge!  Not to mention her visual awareness seem to be improving as well.  

I could probably go on but I'll save it for another post!

Tuesday, February 22, 2011

{Reserved}

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The last days of Gavin's death were such a whirlwind on so many levels.  The obvious and most painful was the fact there we were losing our little boy.  But there were so many other issues swirling around us like the issues that come along with withdrawling care and the fact that we wanted to come home, yet Gavin would not have made the ambulance ride home.  Then there's the fact that we didn't really have a home.  For those who are not familiar with our story, we were set to move into a new home, our current home, the weekend Gavin died.  Our community came together to renovate an existing house and make it wheelchair accessible for our little boy and his new power chair.  People worked day and night to get the house ready before he died -- sadly, Gavin was just ready to go, and died that very same weekend. 

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Hours after Gavin went to heaven we drove home to a house I had never seen finished before.  I didn't even recognize it.  Last time I was in the house was when it was simply a shell.  Our wonderful family and friends moved our entire apartment into our new home the day and night before Gavin died.  When we came home our home was all set up.  Our bed was made, clothes were folded and put away and the house was nicely arranged.  Weeks and months after Gavin's death I would go into his room and find things that I had not previously seen before.  I had a basket of mail that I never went through stashed away in his closet, medical supplies that were just to painful to sort through and of course things like his clothing and blankets.

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At some point last year as we were awaiting the arrival of Angela I knew it was time to clean out the room -- time to go into that dreaded closet I had been avoiding for some time.  In the top drawer of his dresser I found this square red piece of cloth with the word RESERVED written boldly across the top.  It took a second to figure out what in the world this odd cloth was for -- then I remembered it was the same piece of fabric we drape over the chairs at church to reserve them for Pastor and other people who need to be seated up front.

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I later learned that the week before Gavin's death there was a speaker at the church who was praying for people to be healed.  At that point, people from across the world were petitioning God for Gavin's healing and our church family was no different.  From what I heard someone grabbed that meaningless piece of fabric for this man to pray over and for us to receive as a representation of the prayer this man had prayed over Gavin.  Anyway, someone then placed this fabric in Gavin's crib and that word RESERVED took on new meaning -- this crib was reserved for Gavin -- He needed to find his healing and come home.  

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I haven't thought about that cloth for a long time.  The other day we when the weather decided to warm up for a brief second I took the girls out on the deck.  Something just made me get that feeling -- you know, the feeling that somehow starts to churn in your soul that tells you, you are in the very place God wants you to be in -- that somehow you did good, you followed the correct path and you have arrived at the perfect destination.  I looked at both my girls and it clicked -- This home received the very prayer that was prayed over that silly piece of fabric.  This home was RESERVED for her -- Angela, our new little girl.

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It is absolutely mind blowing to step back and just ponder how the little details of our lives are woven together to create our future.  I was reminded once again of His faithfulness to this family.  Angela is home -- and I truly believe has been waiting for us since before she was born.

Our family was RESERVED just for her.

Tuesday, February 15, 2011

{Missing My Little Boy}

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I once heard it said that the first year after the death of a child is the most difficult.  After Gavin's death I really believed this, and would count the months as they went by excited for that one year mark -- just maybe we would find a little more peace.  I'm thinking who ever said this phrase, obviously does not think like me.

I find that this second year has been the most difficult.  I miss my little boy more than ever.  My desire to just go dig a path through the snow to his grave and curl up next to my baby is sometimes overwhelming.  I hate that the rest of the world is moving on.  It makes my heart and soul churn just thinking what this year would have brought.  My baby would be turning five.  He would have been able to meet his little sister. 

These words sting beyond belief.  

I remember feeling so much anxiety in that first year following Gavin's death -- fearing that one day I would simply forget.  Lately I am strangely both comforted and tormented by the thought that I will surely never forget.  The memories are not as fresh but the pain is still so very real and raw and still pierces just as deep as the day we watched him take his last breath.

I've slacked off a bit on totally surrendering to God.  The stress of our new normal often puts me in a place where it is so easy to just take on the load and carry it all by myself.  I need to give Him back so very much.  The more I carry the harder it is to let it go -- the stress, the pain, the grief, the fear -- dare I say, the control.  

Pain stinks.  Death stinks even more. But this morning I'm reminding myself that out of these ashes beauty will rise -- but only if I let it.  

Friday, February 11, 2011

{Growing Up}

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These are some of my most favorite photos of my little Madi -- my first born, the baby I once was able to fit in the bend of my arm.  I know people always told me how fast the years go by -- that we should enjoy every moment because one day she will be all grown up.  This is so stinkin' true.  

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Today my little girl turned six.  She is changing in so many ways.  She is maturing.  She is moving on.  This year I have to admit I'm finding my mommie heart just a little bit sad.  There is just no ounce of preschooler left in that little girl -- everything from the way she talks and walks to her thoughts and ideas are just amazingly grown up.

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I don't think I really need to explain just how amazing this little girl is.  I just can't even believe Adam and I were so lucky to be blessed with such a special little one.  I look into her big blue eyes and I see amazing things.  God has an amazing future set aside just for her to travel -- can you even imagine the things she will one day do -- how her life experience will impact this world.  

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I often wish I could do one of two things -- go back to when she was a baby and just keep her small and innocent or flash forward and see the outcome of her life.  I suppose for now we will just wait and watch  her little spirit and soul grow into what I can imagine to be the most amazing thing.

Mommie loves you so much sweet Madison.  You make me so proud each and every day!

Thursday, February 10, 2011

{Trying to Find Solid Ground}

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It's been a little while since I last had a spare moment to just simply sit and write.  Oh, goodness do I have a million things I could share with you all today, but I'll try to stick with the condensed version.  Last week Angela, like the majority of people around our area, was sick.  RSV and pneumonia to be exact.  It was no fun for any parties involved.  She was admitted to a hospital we were not comfortable with and it just was a crazy experience.  It's one thing for your children to get sick -- it's an entirely different ballgame when a child, who even though you consider to be your very own -- is really not quite yet, gets sick and put in the hospital.  Let's just pray we never have to do that again.  

Even with the whirlwind of sickness life goes on and all her therapies have started and are in full force.  She receives physical, occupational, vision and speech therapies either once or twice a week.  I'm all for therapy but I have some pretty strong opinions about the chaos is creates in a families life.  I like to question the benefit sometimes -- but for now since we are still learning Angela it has been wonderful and very helpful. Since Angela is turning three in June, we are also beginning the process of transferring her records over to the educational system -- which again brings on many more strong opinions, but for now we are just going with the flow and exploring all of our options.

With all these things happening, we also have been having crazy weather here in the north, which has left us with one shattered back windshield and a missing right side mirror, whose demise is also credited to Mrs. Nature.  Ugh.  We are also in search for a home nurse so that I can go back to work part time with more stable hours and also have a much needed sanity break.  We had an interview set up for this week but she was a no show.  Bummer. On top of everything Angela's current medicaid is dropping her at the end of the month, which basically means we will need to start all over again in the insurance world -- all new letters of medical necessity, a new PCP and another new system to learn.  Oh -- I just can't wait!

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So, as you can see the chaos is back in full force.  I'm searching harder than ever for some solid ground to keep me not only sane -- but I just want to remain Karen -- not just a mother with a chaotic life, a mother of a special needs child, or a mother still grieving the loss of her child.  I am a firm believer that there is nothing wrong with that.  I've seen so many families who give up life -- and slowly drown in the special needs world.  Yes, our children need us to be advocates and push them to reach their full potential, but if mommy is drowning, how in the world can I teach my kids to swim?  I'm trying.  I'm holding on to the truths that God has spoken over me.  I'm daily reminding myself that he is my solid ground -- no need to look so hard.  

This has been a crazy road.  It's all pretty much what I expected, but really, let's be honest,  until you're really living in the depths of this reality you can never really comprehend how it changes life.  We are learning everyday -- slowing adapting our world to once again become our new normal.

Even though it's a crazy life, I'm so grateful that God would allow Adam and I to do just this.