Thursday, March 29, 2012

{Change}

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Change can be a beautiful thing, but for some reason most of us dread the thought of our normal being shifted in any way.  I kinda go both ways.  I love change in some areas and other's such as a new wheelchair could take me months to adjust to.  Change and seasons are so natural in life, yet we often fight away the chance at a fresh start or new blessing in fear of the unknown.

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Our family is going through a new season. I'm not sure we can totally put our finger on it but we certainly feel it.  Of course there is the obvious of our most recent adoption -- but this new season goes beyond that.  It makes me excited and scared all at the same time.  Maybe part of it is that we have changed, matured as a family and grown to have a better understanding of the purpose God has for us here in this moment.  I just don't know.

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Anyway, as a part of that change Adam and I have begun, with the blessing of our Pastors, to look for a new church to call home.  I know so many people are probably gasping at this point.  It kinda makes me chuckle when I  think in my mind of the reaction -- only because it proves my next point. We as humans seem to think that change always comes out of dissatisfaction or something negative.  In fact, us, especially as Americans often put change off until the very last moment.  We often don't change our eating habits until we are warned by our physician that we are due to have a heart attack any day, or we don't start exercising until we can't fit into any of our clothes -- we tend to always wait until there is a negative to respond to.  Actually if you think about it, failure to change when change is needed can often lead to being is a bad place in life -- feeling rotten and uneasy.  

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Rest assured, we feel no sense of negativity towards our current church family. Change is most amazing when it comes out of satisfaction and happiness and even maybe a leap of faith.  That's where we are at.  We love our current home church -- they will always be a part of our family.  But we just got this feeling God has something just around the corner and is waiting for us to take that step and go seek it out.

Change can be lots of fun.  It's gets my adrenalin pumpin' and my spiritual mind open to the possibilities God just might have.

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Anyway -- just look at my babies.  Without our ability to seek out change this would have never happened.

God has amazing plans for our lives -- sometimes we just got to take the first step.

Tuesday, March 27, 2012

{Learning Control}

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Jayden really is one of a kind.  The way he moves his body is so fascinating.  When you hold him you can feel all his joints pop in and out like a rag doll, yet this kid is so strong.   He has all the tools he needs to become a walker but a big skill is missing -- control.

When we first started PT with Jayden both myself and the therapist were a bit baffled as to what the best approach with Jayden is.  At first you would think working on walking and using his walker would be priority but really that's probably the last thing we really want to do.

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We decided to slow things down and literally slow him down and start working on slow smooth movements.  He can not really produce these movements by himself but we have been working on trying to produce them for him and try to teach him body how to find a little control.

Sometimes it's hard to see progression a daily basis.  Obviously I can look at Angela now and be blown away by the social little girl she has become.  But last year it sometimes was hard to see and we would often get overwhelmed by just the thought of how much learning and retraining she had to do.  The same in kinda true with Jayden, but last week at the park I was totally floored by how far he has come in the past two months.

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last week Jayden sat on a swing with no restraints and quietly enjoyed swinging back and forth.  No moving from side to side, no flapping his arms, no turning around backwards and trying to climb up the swing -- he just simply sat peacefully.  This is amazing and it's something we are seeing more and more of.

Jayden also is now able to be put to bed at night while still awake and he will safely put himself to sleep without preparing for the Olympics in his crib -- he can fall asleep in just a few minuets!  Did I mention he even took a nap in his crib during the day.  Again -- this is major stuff.

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When we first wrote Jayden's new IFSP goals one of them was to be more aware of his surroundings and to be able to safely interact with his siblings. Done.  He has already achieved this goal and actually surpassed it.  He has made so much improvement in his ability to control his body and emotions and be able to find peace and rest.

He has a long way to go to be able to fully control his body and walk safety -- but he sure is getting there!

Wednesday, March 21, 2012

{Well Check, Gastric Scan and the Park}

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Yesterday I pulled Madison out of school for her seven year well check.  Going to the doctor is probably on Madison's top ten list of most exciting and wonderful things to do -- crazy girl.  Medical stuff is all she has ever known, so when she gets her turn, it's pretty exciting for her.  Madison passed her well check with flying colors!  She is probably like in the 300th percentile for height and weight measuring at 4ft 6inches and a solid 62 pounds.  She's perfectly proportionate and I love that our doctor recognized that and doesn't give me the whole she is rather large for her age talk.  I remember being a little girl and listening to the doctors tell my mom I was too big -- It stuck with me for life.  I want my kids to know that no matter the outside looks like they are beautiful just the way they are!  

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There was no doubt in the doctors mind that Madison was a healthy girl -- her legs tell of a child who gets plenty of exercise -- bruised from top to bottom.  So proud of Madison!  We went through all the normal questions of social development and Madison is right on target!  We ended the appointment with a sticker and headed down to duPont children's hospital for Jayden's Gastric Emptying Scan.

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Jayden has complete aspiration.  Anything in his mouth goes right into his lungs.  He doesn't swallow, which in some ways is probably to his benefit since all his saliva mostly just comes out his mouth in a puddle of drool -- keeping it away from his lungs.  However -- he still does aspirate a good amount of saliva.  Jayden is a mover -- and this has also kept those lungs moving and clear.  He is able to clear his airway very well.  We suction him so frequently during the day, which is another sign that things are coming out -- that's all good stuff.  The bad stuff is that Jayden has been spitting up.  It started back in December during our visits, we would see very small amount of formula coming out of his mouth -- nothing too bad. 

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These past few weeks, however, the small amount and started into mouthfuls, which then results in us suctioning formula out of his trach.  With this has come random fevers and occasional need for O2.  Jayden has a nissen but it obviously is no longer in place.  He burps all the time and the frequency of the spit up has certainly made us uncomfortable.  So the doc ordered a Gastric emptying scan to see how things are moving.

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The scan is no big deal.  They basically mix radio active particles into his formula, feed him and then watching it empty out of his belly.  They only did the hour long test and it seemed to move through, though he still had a full belly at the end -- but the test was only an hour.  I did see reflux, which confirms the nissen is blown.  So we'll see what the doc has to say.  Thankfully Jayden is a healthy boy and can somehow keep himself from frequent pneumonia.  

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After the scan we headed to the Can Do park.  This park is amazing and is my favorite inclusive park ever. The main reason I love it so much is that it is so open and there are so many options for kids of all abilities. I can wheel the little ones through so many paths and through so many jungle gyms.  There are several different types of adaptive swings, with the ones in the photos topping off as my favorite!  Jayden blew me away with his safety awareness, which deserves it's own post.  

All the kids had an amazing time enjoying this amazing weather!

Friday, March 16, 2012

{Finding Community}

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One of the biggest lessons I have learned over the past seven years as a mommie -- I just can't do it alone. Any parents needs other parents to model after and to find support.  Take it to the next level and consider a family who is dealing with a child/children with special needs and that need for community skyrockets.  Having children with disabilities is isolating.  It doesn't matter if they are from birth or through adoption, it still has this way of making it really difficult to just have normal friends.  Once your experienced this side of life -- the longing to surround yourself with people who truly understand what this life is like is so very strong.

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This is one of the reason's Adam and I came up with the idea for Chronically Cool Families -- a place where all families, no matter what diagnosis, could come together and find friendship, which would naturally lead to support.  It is just so important.  Studies show that when a Chronic Family finds much needed support there affected children do better (in my mind this also means that while they might not live a longer life -- the life they live will have much higher quality)  These same studies also show that marriages stay together despite the horrific statistics in the marriage with special needs children world.

It's just so darn important.

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It's not that friends without children with special needs are any less special and important, but we find that it can just be difficult to relate -- just as after you got married it was often difficult to simply hang with your single non-married friends.  You still love them the same, and treasure their friendship but the logistics of simply hanging out has seriously changed. Of course there are always exception -- it's always a balance.

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This week we were invited out by friends to the Zoo. I gladly jumped on the opportunity to hang out with good friends from our CCF group -- we had a great time.  Not only was the weather beautiful but so was the conversations.  I don't think it's healthy to only talk about this life but it's amazing to have the opportunity to talk about wheelchairs as if they were sports cars and actually have the other person understand!  It's so important to have time outside this stressful life -- but the inside is pretty darn beautiful as well and it's so much fun to have people who can enjoy it with you!

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I also wanted to mention that our good friend who also happens to be a social workers at duPont Children's Hospital and facilitates our CCF group along with staff from Child Life, submitted the CCF concept for the nation social workers conference and we recently found out that it was accepted!  Very excited for her to go and show other social workers just how easy it is to begin this amazing group, supporting both the family and the children -- both the special needs child and the siblings.

So excited to see Gavin's legacy carry on.


Thursday, March 15, 2012

{New Day, New Dawn}

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In this house around 5:30 or 6:00 in the morning the most beautiful thing happens -- a new day begins.  Again, God just simply knew what we humans needed to make it through this crazy thing called life.  Every morning we have another chance at life and this cycle continues as long as we are still breathing here on earth.  So amazing. 

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Monday brought along with it the worst day I've experienced since starting this chapter on our life.  It  was just so difficult.  Jayden was pushing every button in my mommie heart and mind -- I just couldn't win.  His hearing and vision seemed to just not want to cooperate with either one of us.  It just was a plain old rotten day.  Add to this that we realized early Monday morning that we lost his glasses -- double trouble, making my day even worse. Thankfully a friend told me about this site, where I purchases three new pair.

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Adoption is amazing but it is also one of the biggest challenges Adam and I have ever faced.  The best tool we choose to use is the ability to start fresh everyday.  It works.  We let go of yesterdays drama and challenges and hope the next day bring progression and happiness.  Thank God for fresh starts.

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Anyway -- Angela is currently going through belly boot camp. About six months ago we purchased Angela her ChildRite seat.  It was one of the best investments we have ever made for her.  But we started to rely on it a bit too much and Angela started to develop a nice hunch back -- so we put the chair away and back to her belly she went.

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She does great, and because of her new found strength she seems to be able to tolerate longer periods on her belly without doing face plants and getting frustrated.  We expect to see another increase and strength after all this belly workout time, which will not only make me happy but will make Angela very happy as she will able to do more things and be more active -- which is what she longs for!

Again -- a new day, a new dawn.  Can I get an Amen?




Monday, March 12, 2012

{The Evolution of Us}

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Did you ever have that moment where you step back and just observe your life, as if you were an outsider looking into your world?  There is power in stepping out and looking at the big picture -- widening your view.  Stepping out and looking onto our world right now fills my soul with the most amazing peace and joy.  Looking at what our family has become gives me this beautiful sense of purpose -- that we are in the perfect spot, the very place God wants us to be.

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Anytime we attempt to take family photos it is always an event.  It may not last long but it takes planning and patience beyond what my type a personality is usually capable of handling.  There is also an element of grief that always comes into play -- I always recognize that we are missing one of our children.  It always reminds me he is gone.  Despite all this I'm so glad we got these photos.  While they aren't the best in quality -- there meaning over looks that.  These photos show just how beautiful adoption is -- a glimpse of what it looks like to be in the very spot God wants us to be. 

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When I look closer at the evolution of us -- step back and observe what we have become, I can't help but still see our little boy flowing though this thing we have become.  It's amazing.  I could never thank God enough for writing this story for us, choosing me -- allowing me to call them my babies, all four of them.

The evolution of us blows me away.

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Life is busy and crazy.  I know I often compare adoption to the physical birth of a child -- It's just so similar.  There is this crazy phenomenon in biological birth where the women magically forgets the intense pain of labor.  I know it happened to me in both Madison and Gavin.  I had a natural non-medicated birth for both kids and although I remember the pain -- I don't really remember the pain, if you know what I mean.  Adoption is the same way.  I obviously forgot just how hard we worked to help Angela get to the place she is at now, as Adam and I both question how is the world we ever did this.

I remember my parents joking with us all the time, commenting on how we corrected Angela all the time.  They were right!  We used to have this song/chant "hands down, tongue in your mouth"-- it's so funny to look back on.  It was constant behavior modification though various techniques.  We would end the day both mentally and physically exhausted.  But it worked.  Angela has bloomed into this amazing social little girl, who we only occasionally need to prompt.  So now we are starting over with Jayden.  They are totally different but still they both need and needed to learn how to be part of a family, how to function successfully in society and most of all how to be happy and content.  

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Jayden is doing amazing. I sat down at his intake for early intervention this past week and I started mentioning some of the behaviors Jayden has that need to be addressed, some we have already started.  As I started to go on and on about how Jayden just can't sit still -- he always needs to be moving -- there was Jayden sitting quietly on the floor with his hands in his lap watching TV!  He is seriously progressing faster that even I can keep track of.  He is just so content these days and that is so beautiful to see.

The evolution of us -- I just have to wonder what we will look like one year from now?





Thursday, March 8, 2012

{Seasons, Seizures and Ugly Shoes}

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Today in the northeast the weather is beautiful -- the nicest day so far this year, just maybe a hint that spring should soon be on it's way.  I just love that I keep here that phrase -- spring is coming.  It is a powerful statement that particularly hits my soul just right.  If you recall it was that very phrase that brought me through the darkest hours of grief during the days and months following our son Gavin's death.

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I held so tight to the idea that times in our lives where we feel total confusion and maybe even deep pain and sorrow, can be likened to that of winter.  The most amazing part of winter is that below the cold frozen ground, new life is just waiting to come to the surface and give new hope and joy -- Spring always comes.  God knew we needed seasons.  We as a flawed humanity always need a reminder that we are weak -- that we have no choice but rely on the grace of God.  Winter seems to remind us all of that.  When hints of spring are in view people get excited -- we get happy again with a renewed sense of hope!

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Today we opened the windows and went out on the deck and enjoyed this beautiful weather.  The past few days we have been on an appointment marathon for the two little ones.  Yesterday we finally were able to meet with Angela's neurology team and came up with another change in medication to try and stop these ugly Complex Partial Seizures.  The increase in Keppra seems to have worked but we still see them every once in awhile so we are taking one more dose increase to see if we can stop them all together.  The team also ordered a sleep study to make sure she is not obstructing at night, as she has been known to drop her O2 levels, lots of snoring and frequent waking up.  This can contribute to seizures -- so we are covering all grounds.

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After stopping antibiotics for a few days Angela's sinus infection from hell came back.  Poor girl.  She wakes up in an inch thick pool of green goo every morning and it just not fun for any of us.  So back on antibiotics she went.  Fingers are crossed that this one kills the bad bugs.

Yesterday we also picked up Jayden's new monster braces.  Actually, they are skateboarders with black straps, but they are monstrous in size.  This is my first experience with hinged braces.  Angela has always worn a full molded ankle foot orthotics, but we have never done hinges.  This makes the back of the brace double thick and much wider.  I'm a sucker for fashion and almost had a mental breakdown trying to find Jayden a nice pair of shoes that fit our personal style.

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I am well aware of all the special shoes everyone keeps tell me about -- I totally appreciate it, but they are just not our style.  It makes me so frustrated that children with disabilities have to suffer in the fashion sense.  Every child deserve the chance to go into a store and find a cute pair of shoes.  I know lots of tricks for altering shoes so they fit braces, but you have to realize how wide Jayden's feet are to begin with -- then add a brace and they are like double double double wide.  Poor kid.  We did get a pair of Crocs, as I've had great luck with them in the past.  They are very tight, even at 3 sizes to big but they seem to be stretching out today.  

Don't worry, I'll get over it.  No mean emails or comments.  I fully realize that looks are not everything.

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Tomorrow we were invited to a special VIP performance given by the Harlem Globetrotters for the kids and families who attended Camp Erin last year.  This was a camp for grieving children -- totally amazing.  We are very honored to have this opportunity to take Madison to see this fun show.  Can't wait!

Monday, March 5, 2012

{Gait Training}

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As I've mentioned before Jayden has come so far since his head trauma.  Although I didn't know our little boy back then I've heard stories and seen photos of his very sick little body.  I was told that a few months after his trauma the nurses would have to wipe his eyes as the simplest thing like blinking was lost due the intense damage in his brain.

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And here he is now -- the doctors shared with us that Jayden's prognosis was very poor. They figured he would have little to no quality of life, and yet he kept fighting. The nurses told us stories of how one day they would turn and look to see Jayden holding up his arms and it brought them all to tears - the baby that never moved and if touched would cry out in pain, was indeed moving and making progress.  It's amazing. So needless to say that fact that I'm even talking about gait training is nothing short of a miracle. 

I wish I had good words to describe Jayden.  People use phrases like -- all over the place and never stops to describe him. He wants to walk so bad, but he has little to no concept of time and space.  He's just kinda out there in his idea of where objects start and end and distances between one object and another.  He just literally flops from one things to the next.  He likes to bend over and stand on his head and tumble.  He is able to stand up with the support of furniture or hands but is so floppy that he will be known to just bend in half at any given moment.

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Gait training has been difficult for him because of these things.  He has gone through several different gait trainers but none have been successful.  He will walk ok when he wants to but he is never safe and as his stepping has gotten better his safety has gotten worse. The one shown here is a popular Rifton Pacer -- he wants nothing to do with it.  We've tried ever configuration possible.  We've harnessed him in and taken it all away.  He will stand up in this thing and just bend right out the side or pick it up and throw it.  He is just not safe.

I think the key will be in his new braces.  His orthopedists  and I agree that he probably has some unlearning to do.  He is getting full molded ankle foot orthotics and the hope is that this will force him to relearn how to stand with some stability.  Right now he just stand up and flexes his ankles to launch himself in any given directions.  

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I have no doubt that he will walk.  Right now he is not ready.  He may think he's ready, but he's not.  I give him a good six months.  I have this feeling that his vision and hearing are going to start going through some  major progress as well as his overall cognitive development.  This cognitive development will give him a little more meat and potatoes to back up his desire to move and groove.

We pick up those braces this week -- can't wait.