Tuesday, March 29, 2011

{Five Good Days}

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I am so happy to let you all know that our Madison has earned Camp Madison, which means that she was able to have five consecutive days of making good choices!  Yippie -- Adam and I are so proud of our beautiful girl for working so hard even when it was really tough.


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It's so amazing to see her work things out in her mind.  We were out to eat the other night and the waitress had given us mints at the end of the meal.  Madison had just got done eating her ice cream and we said she could not have the mint.  She proceeded to take it anyway.  We reminded her of how hard she had worked this week and that losing Camp Madison over one tiny little mint would be so silly.  It was as if you could see the little angel on one shoulder and the devil on the other -- she went back and forth for a few seconds but then smiled and handed the mint over to Adam.  Seems so silly and such a little thing but as parents seeing our child make a good choice in a difficult situation was so cool!

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So this week we will begin to plan out our amazing three day event.  Madsion and I will design the shirt together and then start planning the menu and the three special activities she wants to do. I'm thinking that this weekend will be just perfect for our Camp!

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Speaking of Camp, Madison was officially accepted in the Camp Erin program which is a weekend camp in May that specialized in grieving children.  The children either have lost a parent or a sibling.  Although the camp is staffed by experienced professionals camp is so much more than talking about death.  I have heard amazing things about this program and we are so grateful that Madison can take part!

Thursday, March 24, 2011

{Chronically Cool -- One Year Later}

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After Gavin's death Adam and I wanted so badly for duPont Children's Hospital to have a place where families could get together -- regardless what their child's diagnosis and find a place of hope and acceptance.  It was out of that desire that Adam and I along within a wonderful social worker and friend at the hospital began Chronically Cool Families -- a parent to parent support group for families dealing with chronic illness or disability.



This week we celebrate one year since our group has started and we are so happy with how our little dream became a reality.  Our group has grown to support about fifteen different families! We have on average about fifteen adults and about ten kids.  We offer a laid back environment for parent to just simply share stories and find support.  At the same time the parents group meets the kids also have their very own group where they do activities such a medical play with a Child Life Specalist.  

One of the speical thlngs about this group is that almost every family that attends walks in with a different diagnosis -- yet we all have so much in common, trying to learn how to live in our new normal.  Parent to parent support is something I wished Adam and I had during our journey with Gavin.  It is my dream that no family would have to walk through a diagnosis alone.  So many families feel they just don't fit in.  Sure there are lots of support groups out there but they are mostly diagnosis specific -- what about the rest of us?  Chronically Cool is that place -- a place where parents can come and find friendship and kids can come be kids where tubes and equipment are simply no big deal.

This group has been an amazing adventure for us.  I can't wait for what this new year has to bring.  Thanks so all the families who have made this group possible, providing support to each other.  

If you are interested in attending Chronically Cool Familes please contact myself or Jennifer Fenstimacher.  Meeting are held on the 4th Thursday of the month at the Alfred I. DuPont Hospital for Children in the back rooms of the cafe.

Wednesday, March 23, 2011

{Beautiful Reminders}

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These past few weeks I have received some really amazing emails from readers across the country.  I think this is so amazing for  a few reasons -- one, I still find it crazy that our story has spread in the way it has.  Who would have thought that God would use me -- to give us this opportunity to live this amazing life and this walk this powerful journey.  The second reason I love these emails is that they remind me of why I write the things I do -- why I choose to reveal the good the bad and the down right ugly.

One email I received was from a fellow grieving mother.  It seems like we have lived very similar stories and this reader was asking how I find the ability to still trust and have faith in a God that allowed this intense suffering to happen -- how he let our child die. I was so grateful for the reminder to simply go back and remember -- how do Adam and I hold on to our faith, trusting that God is faithful even in the most horrific of times.

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I took some time to just simply remember.  I remembered a time where Gavin was suffering beyond words could describe.  I vividly remember my little boy laying on the hospital bed trying to crawl out of his own skin.  Not even my touch could comfort him -- I could only sit.  Sit and watch my baby's body attack itself causing severe pain and suffering.  I remember being so angry at God.  I remember trying to desperately understand how a God who promises hope, peace and healing could choose not to allow my son to experience freedom from his illness.

It was at that time that I started to get it. Don't be fooled -- I'll never really fully get it, no one will.  But, I started to understand that the ability to choose to still believe in spite of the reality that was being blasted in our faces brought a freedom and joy like no other.  I believed that even though my physical eyes were witnessing the slow death of my child my spirit choose to see the amazing healing that being done right before our very eyes.  It may not have been the healing we all wanted but it was the healing we all needed -- the ability to see hope, the ability to believe, the ability to experience the deepest of joys -- choosing to see the amazing purpose my little boy had on this earth, the purpose our family has here on this earth.

Thanks for all your emails.  Thanks for helping me to go back and simply remember why I believe what I believe.

Wednesday, March 16, 2011

{Six Year Old Stuff}

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Madison is changing.  There is no doubt about it.  Adam and I feel very strongly about our decision to put Madison is public school.  We pray that the foundation we provide her at home will be a huge light to the people she will encounter as she walks through the jungle, otherwise known as the public school system.  With this said we have noticed so many things that come out of Madison's mouth that we wish our little girl was not exposed to.  It's so hard.  We want her to grow up learning how to make good choices even when others are not, but we as her parents can not always be there to hold her hand.

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We have been having some behavior issues at home.  Most people who know our little Madison are aware that she is a really good kid.  Adam and I are so stinkin' proud of the way Madison has overcome the odds and really bloomed into an amazing kid.  But there are still areas that she needs some redirection.  I will be the first to admit that I have a lot of guilt when it comes to Madison.  I always fear the trauma of her past plays a role in everything she says and does.  I'm a nut.  I know in my heart and mind that the behaviors we are seeing are totally age appropriate but that little voice inside gets me every time.  I need to just get over it -- for real.  Yes, Madison has had a rough start to life but I'm choosing to see her past as life enriching rather then life destroying.  I just need to remind myself everyday of this.  God chooses to use the most ugly things to create beauty.  I need to allow him to do his work and not assume the worst outcome.

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Madison has a lot on her plate -- well actually she really doesn't and that seems to be a big issue.  On some days Angela will have up to four or five people come into our home to provide her with services or talk to me about her care or adoption process.  Madison is often told to find something to do -- to go outside and play.  This kinda stinks.  But it's how things will be for a very long time so Adam and I are coming up with a plan to give Madison the time she deserves.

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We decided to push her bed time back by one hour.  Madison has always gone to bed at seven.  We really like that for obvious reasons, but allowing her to stay up an extra hour after her little sister goes to bed will rock her world -- giving her time with mommie and daddy with no little sister type interruptions.  Remember Camp Madison?  It's coming back.  For those who do not know,  Camp Madison emerges when Adam and I really want to change a behavior.  Last year it was going to bed -- she would fight us every night.  After a certain number of good days is acheived the three day camp event begins, where Madison gets to choose one special activity per day, like going to see a movie, or craft night and she also gets to plan the meals for all three days.  Camp Madison is a big deal.  We design our very own super cool T-shirts  and proudly wear them all three days!

I know God has equipped us with the ability to parent our amazing children -- some days I just need to take time to remember this.  Allowing myself to throw off the guilt and just smile as we watch our little girl grow up -- drama and all!

Monday, March 14, 2011

{A Girl And Her Pony}

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There are some days where the intensity of Angela's needs are so overwhelming.  If I said the opposite I would be telling a rather huge lie.  That fact that I love this beautiful little girl beyond words really doesn't change that fact that her needs are great.  Angela has amazing potential.  Adam and I have been blown away by the things that we see come out of her little mind.  The biggest issue with Angela's care is that she needs to be engaged at all times.  She needs to be touched and talked to almost every second of the day when not sleeping.  If she is not being engaged she reverts to self-stimmulating behavior that causes the sweet Angela we know and love to temporary go away.

I know without a shadow of doubt that we will be able to help her find a way to stop these behaviors and find a way for her to bring this wonderful world to her in a life enriching way.  With that said -- we have a long road ahead.  We are ready -- but today I'm a little tired.

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Then I look at these photos.  This is Angela's new gait trainer.  Just a few months ago there would be no way she would have been able to tolerate bearing weight on her little legs, not to mention holding herself up so big and strong.  This girl is amazing.  She is so smart and is catching on to so many new skills faster than we can teach them.  

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This one photo is of Angela playing so big with her arms.  Do you realize how difficult this is for a child with CP and blindness -- not to mention she is upright in the gait trainer balancing her body weight.  This leave me speechless and is such an amazing reminder of just how far she has come.  I found these great bells that I attached to each of her ankles at the gift shop in the hospital.  Due to her visual impairment, the bells help her to see her feet by simply hearing them.  They also provide some great fun motivation for those little legs to get moving.  

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We will begin the process of purchasing a KidWalk this week.  The Pony is great but I've heard such amazing reviews on the KidWalk and can't wait for Angela to have one.  The Pony we have was given to us by a friend who also received it as a hand me down.  Some of the adjustments are no longer adjustable so we are hoping the process will not be too long.  We are still waiting on her wheelchair to come in as well -- nothing ever happens fast. 

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We are taking one day at a time.  Usually by this time each day I'm tired beyond tired, but each morning when I hold this sweet little one in my arms, giving her my good morning kisses and hugs the tiredness of previous days just melts away.  She is so worth everything.  

Really worth everything.

Thursday, March 10, 2011

{New iPad Apps and an EEG}

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This past week Angela had her 24 hour ambulatory EEG. I'm not a fan of EEG's -- it's that darn glue. You would think with all the new technology these days there would be a better system for putting the electrodes on a child's head. After a long night with Angela, a bottle of nail polish remover and cotton balls I think we have the majority of the glue out.

She did have several episodes of possible seizure activity during the EEG so we are hopeful the neurologist will have some information about what we are seeing. I just am really looking to help her out of this funk, even if it's not seizure and more behavioral it's something we need to seriously work on as it seems like every time she goes into that mode it causes her to regress.

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We've purchased lots of new apps recently for Angela. I wanted to share a few with all my fellow iPad loving friends out there! Angela's new favorite app is Tap Tap baby. This is a great app for kids needing that cause and effect input. The app is very simple yet offers over four activities in the one app. It offers fireworks as well and animal sounds and other fun stuff. I really like the animal sound because it teaches her to aim. If she likes the pig sound she needs to try to aim in the same spot to hear the pig sound again. Even with her visual impairment she still has physical movement and can navigate just by recalling her motions she made to produce a certain sound.

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The fireworks is always a good one to get her little fingers open and moving. The black screen and the bright colors and sounds of the fireworks are a perfect combination for Angela visual impairment.

Our other favorite right now is fish pond. This is such a simple app and Angela doesn't really use it for the visual aspect but she loves the splashing sound and it keeps her very engaged!

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Read along books are a real life saver when we are out and about.  Angela has trouble with excessive light gazing and these books, with the bright screen, help distract her from the light and help her find a more socially appropriate activity to do.  I love all Dr. Seuss books -- and they are currently on sale, which makes me love them even more!

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Angela loves music and although this is a higher cost app this app offers to many songs and the best part is that it will play full screen and you can loop the seasons and it will play for around ten minuets. This is a great app to work on motions to songs and also get Madison involved in Angela's play. I've also learned a few new songs as well!

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I'm just so excited with the progress our girl is making. Ugh she just melts my heart in so many ways!

Wednesday, March 9, 2011

{Family Redefined}

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When I was a little girl I never imagined I would one day be living the path I am currently walking.  To be very honest -- I never thought I would even marry.  I was an awkward kid and an even more awkward teenager.  God had some serious grace on me --seriously.  

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I never imagined that I would have children, yet when I first found out that we were having our first baby I had no fear and was so excited to welcome our little girl into this world.  I certainly never imagined I would ever have a baby boy -- yet alone see him for the first time and three and a half years later bury his beautiful little body.

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It’s so crazy how life has so many twists and turns.  Most of my life is unexpected which, in my mind, makes it all the more exciting!  Today I look at these photos and I see a beautiful puzzle put together over the past thirty years.  

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Adoption is such an amazing thing.  I believe without a doubt that the process of adoption is just as good as naturally birthing a life into this world -- just at special, just as amazing, still totally life changing.

These photos redefine family.  
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They show how even before we were all brought together -- we were destined for each other.  Adam and I are the prefect parents for our three amazing children and our three children were the perfect fit to make our life simply beautiful.

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We are a family redefined.

Tuesday, March 1, 2011

{Nursing and Busy Fingers}

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This past week we finally found a home care nurse for Angela and we started with twenty hours a week nursing care here in our home.  I had so many reservations about starting nursing care -- does she really need it? Do I really need it?  I came the conclusion that even though I know that Adam and I, without a doubt, are totally capable of taking care of Angela -- truth it, she is a lot of work, and if the services are available we really would be silly not to take the help.  Mommie has time away from home to refocus and come home energized and ready to begin where I left off, and Angela has time away from mommie, which I think is a win win situation.

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So far it is going well.  Home care is so difficult.  It's awkward for all parties involved.  But I'm trying to be nice and relaxed and let time make this work.  Angela is doing so well -- and having some extra help to push her and practice the things we are working on is going to be just awesome!

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I recently ran into an old nurse of Gavin's this past week and a million memories came flooding back. We really had some great nurses that cared for our little boy -- I am so greatful!  This past week at Chronically Cool Families support group, I was remineded of some awesome nursing memoires -- you know, the memories that we can never let die, like the time Adam forgot the night nurse was working and came downstairs missing some essential articals of clothing!  

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This week Angela's little fingers have been in overdrive!  It is so amazing so see her little mind make body connections.  You can often see in her face that she is trying so hard that get those muscles to move in the way she would like -- and then BAM, her little arm pops up and the fingers start looking for toys and fun stuff.  It's so darn cool to see!

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It click last week a way to keep all her toys right at her hands.  Those little links that are used for baby gyms and also to attach toys to strollers and highchairs, they have become essestial for keeping Angela's rattles and other small toys where they need to be.  I attach the links to her chest support in her stander or  chair and then attach the toys to the other side.  Why didn't I think of this simple thing before?  It works like a charm and she is discovering more and more ways to play and get those fingers moving and exploring!