Thursday, June 23, 2011

{Giving Her Back Some Control}


Angela is full of personality.  She loves to smile and laugh and also has a temper and a will stronger than I've ever seen before.  This little temper of hers has been showing itself way to much lately and has been rather difficult to deal with.


Most of the time she is the happy little girl you see in these photos, but right around feeding time her little temper starts to flare.  I have been doing so much thinking about this lately.  Feeding and Angela's learning to eat has been very interesting to watch.  She has learned so quickly, what takes some kids years to learn.  She went from taking nothing by mouth to taking everything by mouth in less than two months.  She does enjoy eating when she wants to.  She is able to express her preferences and we try to give her yummy food that gives her variety as well as lots of texture which she prefers over boring purees. 


Feeding used to be a lot easier with her but lately it has become a battle -- one giant battle for control.  I don't blame her one bit.  Most of her day is totally dictated by us -- we choose what she does, when she does it and what toys she does it with.  Her muscles do not work but her little mind is full of preferences and ideas of her own.  I've been trying to figure out a way to give her back the control she wants -- and the control she deserves.


So we decide to re-do our feeding approach and methods.  This has not been easy.  The way we were feeding her was effective and fast with little to no mess, but it also took all control away from Angela.  When she was first learning to eat this method worked and was best for Angela, but she is changing and so must our methods. We are making sure that Angela knows it is time to eat with a verbal prompt and a little food on the lips. Instead of holding her her head back and pushing the food in we are trying to ask her to open and receive the food. This doesn't always happen but we sure are trying!  We previously would put the food on the back of her tough, since she doesn't really have a good swallow -- now we are trying to clear the food with her top teeth and allow her to move the food back and swallow.

If she's in the right mood this seems to work, but it has not been easy.  Feeding is a very difficult thing -- it's something she needs to do yet we also want it to be a fun happy experience.

Really excited and eager to see the oh this is so yummy switch turn on in her head -- I know it will happen!

Wednesday, June 22, 2011

{Learning to Play}

Madi & Angela-17

Madison has never really had the opportunity to really play with a sibling.  When Gavin was alive he was kinda off limits as far as holding and rough housing -- things normal siblings do all the time.  Although Madison and Gavin developed their own special bond in their own special way they never really have much physical play.

Madi & Angela-13

When Adam and I decided to adopt one of the many things that made me so excited was the idea that Madison would have a sibling again.  Its been crazy to see just how perfect Angela is for our family -- she fits right in and her relationship with Madison is no different -- it just works.

Madi & Angela-7

The formation of their relationship has been amazing to watch.  I remember the first time Madison met Angela, it was as if they knew each other forever -- nothing about Angela scared Madison and made her uncomfortable.  Their relationship has recently gone to an even deeper level -- they are learning to play.

Madi & Angela-15

Madi & Angela-6

Often times, people who look at Angela and do not know her don't understand that Angela is a smart little girl who in many ways thinks just like a typical three year old.  She wants to move -- act crazy, and never sit still.  Madison has this ability to look at Angela and see just that.  Madison loves to carry Angela around the house, wrestle on the floor and giggle -- just like sisters are meant to do!  It is so beautiful to watch.

Madi & Angela-4

Life in the Owens' house is crazy as ever.  These past few weeks have brought on lots of doctor appointment, including cardiology, seating clinic and also a trip to the PCP to figure out some of Angela GI issues.  Angela has been having lots of vomiting with feeding and we are trying to figure out just what to do.  She is now taking all food and liquid by mouth but her stomach is unable to hold an appropriate volume and this coupled with her poor gastric emptying causes lots of vomit.  We placed her on some motility meds to give it a try and we are saying a prayer that this is the answer.  Angela's GI doc left duPont so getting in to see a new specialist is going to take some time.

Madi & Angela-1

We ordered Angela a KidWalk and are so excited to get it in and have her start using it!  She currently has a pony but some of the adjustments are broken and we just can't get it set right for her to use properly.  The KidWalk will take a few months to arrive -- hopefully before the cold weather get here again! We also ordered her a riffton seat to use for her living room chair and also with feeding -- this is the only fully wipeable chair we have found.  Just can't figure out why all these adaptive chairs are made with cloth -- so gross with feeding.

Enjoy the photos -- love these girls so much!

Saturday, June 18, 2011

{Chronically Cool Families at the Phillies}

CCF Phillies Game-22

Many people know that Adam and I along with our good friend and social worker founded Chronically Cool families, a parent to parent support group for families dealing with chronic illness and disability.  Tickets were donated by Roy Halladay and the Phillies to our group to not only watch the game, but also spend time down on the field and also seats in Halladay's private suite, which was very comfy and filled with lots of food and special gifts for the kids! We were made to feel so special and this day will never be forgotten!

CCF Phillies Game-9

CCF Phillies Game-10

This was an amazing time for us.  Not only because it was just an overall great experience but it was so amazing to watch all these families having fun -- putting aside what life deals out on a daily basis an simply having fun!

CCF Phillies Game-6

CCF Phillies Game-3

CCF Phillies Game-31

CCF Phillies Game-30

Our friend came up to me at the game and asked how we were doing and such, as we were spending the week remembering our little boy.  She reminded me that all this was because of his life.  It kinda took my breath away.  I know Gavin's life has been greatly used but sometimes I get so focused on details like CCF not having a website yet, and I forget to see just how amazing it is already and how many families are being impacted!

Silly me.

CCF Phillies Game-25

CCF Phillies Game-24

CCF Phillies Game-15

We are so grateful to the wonderful opportunity given to us by the Phillies and Roy Halladay -- and congrats on the Win!

Wednesday, June 15, 2011

{Keeping His Memory Alive}

Gavin's 5th Birthday-1

I know many people look at our life and wonder how and why we do the things we do, in regards to Gavin's death.  Somehow in our culture the idea of death and the concept of celebrating those who have died is so taboo.  Throw in the the idea of the death being that of a child's and it's deemed unmentionable. Our family is determined not to let what looks culturally normal to define the our family.  Gavin will always be a member of our family and he will always be celebrated -- never pushed under the rug.

Gavin's 5th Birthday-4

Gavin's 5th Birthday-5

Another reason we choose to keep Gavin memories alive in very real and physical way is for Madison.  Although at times I think little ones understand way better the idea of death and are able to simply accept it way more than adults -- truth is children need tangible ways to mourn and remember.

Yesterday we did just that.  

Gavin's 5th Birthday-2

I had been wondering lately just how Madison is doing.  Adam and I have both realized that she is starting to forget the details of Gavin life.  Even though this is a sad reality for me as a mother to watch -- it simply means she is growing up and healing.  But, I've sensed that along with her memories fading comes in a bit of confusion and frustration for her six year old mind.  I can't imagine what it's like for her little heart and mind -- knowing she is sad yet starting to forget the details that made her so sad.  We as her parent walk a thin line -- giving her words to her feelings yet not pushing our feelings onto her.

Gavin's 5th Birthday-7

Gavin's 5th Birthday-6

At one point in the morning was her breaking point.  I knew she was really struggling with her feelings as she was acting out and really just out of control.  Then I gave her some words like, I feel sad and I miss Gavin -- and then the tears and healing came.

Gavin's 5th Birthday-9

Yesterday was an amazing day.  Spending some time as a family at Gavin's grave -- all being together and just simply being.  Not a lot of words, yet the unspoken spoke so loudly.  Thank you all for your unending support.  Thanks for loving our children and walking this journey with us.

Tuesday, June 14, 2011

{Turning Five in Heaven}

Gavin's Last Birthday-4

I often wonder what it will be like on the day I get to see my little boy again.  I'm really hoping that he will be just like he was when said goodbye -- perfectly three and a half.  Madison and I have had this conversation so many times I've lost count.

Gavin's Last Birthday-5

This birthday has been extra hard.  Five years old -- it's so hard for me to swallow.  I think this year has been more difficult than last because this year is filled with lots of would haves.  Gavin would have been starting kindergarten.  He would have been growing tall and handsome just like his daddy.  He would have been talking and telling us all of his interesting little boy thoughts.  He would have...

Gavin's Last Birthday-3Gavin's Last Birthday-6

Today as the girls and I were driving past Gavin's grave as we do almost everyday we were listen to music in the car.  We were listening to Kim Walker sing, Show Me Your Glory.  The song talks about wanting to see God's glory in the most powerful way, just like Moses and Jesus did.  I'm not afraid, I'm not afraid, the song plays.

Gavin's Last Birthday-9

The months after Gavin died I would listen to this song over and over.  It was in my deepest season of mourning that I desperately want to see God's glory in Gavin death.  My heart knew it could be seen but my mind was screaming out for answers and reasons.  

Gavin's Last Birthday-8

This year as I listen to this song I felt different.  I've begun to see a glimpse of that Glory -- the very essence of God displayed thought our little boys life and death. I feel like that Glory surpasses all of the would haves. That Glory can bring comfort to my hurting mommie heart in a way that nothing else can.

Gavin's Last Birthday-7

Happy fifth birthday in heaven my sweet little boy. 

If you would like to honor Gavin and give back in his memory to the hospital he lived most of his three and a half years -- this is how you can do just that!  We will be accepting donation all throughout the months of June, helping us to remember, honor and celebrate the legacy of hope he left behind.

Monday, June 13, 2011

{My Little Water Bug}

Angela Piper-4

I have always been a huge support of letting kids with special needs have every opportunity to experience water possible.  When Gavin was alive this was one of my most proud accomplishments.  With all his IV's and tubes coming out of every part of his body we figured out a way to give him a safe water experience -- and the benefits were so huge for him.  We have taken the same approach with Angela and so far she is pretty darn excited we have!

Angela Piper-3

I have used several different kinds of head supports with Angela.  We first tried a neck collar, but found that she was just too small for it -- even the smallest version was too thick for her little neck and we also found that it too often would push her bottom half to float and did not give her the ability to stay vertical.  We also tried a small inflatable neck support but found that this was too small and would not support her enthusiastic body.

Angela Piper-5

I've had lots of friends utilize the Water Way Babies program and I finally decided to give it a try.  Amazing.  That's the best way to describe it.  The neck float is absolutely perfect for Angela.  It keeps her neck well supported, yet keeping it in a natural position.  The device allows her body to stay vertical and allows all of her limbs to freely move in the water.  We add one pound weights to her legs to help her keep her feet on the bottom of the pool, giving her the input of standing, yet with the support of not only the flotation ring but all the pressure of the water surrounding her body.

Angela Piper-2

We also purchased the in home therapy pool.  Angela has been using it everyday and it also is fabulous.  Even though Angela is probably on the larger size for it -- because of her lack of tone she is still gaining lots from being in the water.  It provides a great environment to help her gait train -- again with the support of both the ring and the buoyancy of the water.  My only concern with the pool is that she is so crazy about the water that she just bounces herself against the walls back and forth -- but I guess that's really not that much of a problem!

Angela Piper-1

So excited to see our little girl gain strength from the WaterWay Babies program.  Thanks to Nancy for all you help in getting us started!

Friday, June 10, 2011

Claiming Her as Our Own

Angela Piper-1

Yesterday was the day we had been waiting for since more than one year ago -- yesterday Angela legally became our child and in front of a court of law she was declared Angela Piper Owens.  If only my words could describe this day adequately.  It was so amazing.  

Angela Piper-6

Yesterday as we prepared at home to head to the courthouse I had so many emotions running through my heart and mind.  I felt very similar to the moments I delivered Madison and Gavin -- so excited yet filled with so much anxiety and fear as well. The day went so smooth, no glitches or hesitations, the judge was more than willing to declare her our own.

Angela Piper-3

Adoption is amazing.  I find it really hard to understand how it can not be fully embraced by the Christian community.  I think back to when we were first starting this adoption journey.  There were so many questions that people had as to why we would do this again -- was it best for us? -- was it best for Madison? I look at where we are now and I can fully say with out a shadow of doubt that this was probably this biggest gift God could give us for this season of our lives and the best gift we could give Madison.

Adoption is who we are as Christians -- God choose us.  And despite our pasts, he chooses to claim us as His own.  I don't know how it could get much better.  

Angela Piper-2

We have claimed Angela as our own from the day we first saw her photo.  Yet over the past six months we have always had the legality of her placement in the back of our minds.  Yesterday, as apart of our testimony we were asked by the lawyer -- "Do you understand that by going forth with this adoption you gain all rights and privileges as if she was born unto you?"

And with a huge lump of pride in my throat and overwhelming love in my mommie heart I answered, "Yes I do."

So unforgettable, so beautiful.  

Tuesday, June 7, 2011

{Three Rocks}

Three Rocks-1

I'm not sure there really could ever be a perfect explanation of what life is like after the death of a child. For the most part, I would not want people to really understand -- as in reality the only way to really fully grasp this world is to live it yourself -- I wish that on no one.  However, I often wish people could just understand just a little bit of what our life is like now that Gavin is gone.  

Shortly after Gavin's death we enrolled our family at Peter's Place.  This is a non-Profit group therapy center to assist children and families in the grieving process.  We would go on a biweekly basis and Madison would join about six other kids in her age group who had either lost a sibling or parent.  During Madison's group time us parent's would gather and have have our own time of reflection.


This past session was our last time in this group.  We just felt like it was time to move to the next step in our healing.  

During this last session Madison took part in a beautiful ceremony to celebrate her healing.  Madison was given three rocks.  Two of the rocks were beautifully smooth -- polished and perfect. The cool smooth stones were soothing to the touch -- they signified our healing.  The other rock was rough, as if it had been cracked off with no care of concern.  It was ugly.  There was no smooth edge to be found and was just plain ugly.  This signified the pain and grief that we will always carry -- the death of Gavin.


Now when you first look at these stones the beauty of the smooth rocks is the first thing you see -- they are the majority.  But once you take a closer look you see the rough edges of that one lone rock.  As our life continues on our pile of smooth rocks will grow -- our healing will become more and more firm.  Yet even during the times where we feel that God could not possible heal our hearts any more, there will always be that rough rock.

Many Christians and people of faith would say -- well doesn't God want totally wholeness -- complete happiness and healing?  I think somewhere in the history of Christianity/Faith we got it all messed up.  Our human idea of wholeness doesn't match that of God's.  If we were to take that rough rock out of our pile -- it would be as if we would erase the life and death of our little boy.  Even though the pain is so deep -- in our pain and groaning His grace and faithfulness runs even deeper.


If were to walk around with a handful of smooth rocks we would be claiming something we are not.  Our rough rock has made us who we are and in our eyes, beauty can be seen even in the rough edges.

Three Rocks-2

Thanks to Peter's Place for helping us in our journey of grief.  We will never forget our times of simply being able to be a family in pain -- and during those times, also seeing the possibility of healing.

Monday, June 6, 2011

{Low Vision Assessment}


Before we welcomed Angela into our home we were told about her many diagnosis -- well, actually we learned about quite a few after placement but that's a whole different post.  One of her challenges we did know about was that fact that she was considered cortically blind.  When Angela was born she suffered a grade IV brain bleed due to her prematurity and also from her overall fragile state due to sepsis.  The hemorrhage was located in the front of her brain directly surrounding her optic nerves.  On exam you can see that both her optic nerves are very pale -- meaning that at some point, which we know was the point of brain injury, the optic nerves did not an are not getting the O2 they need.  So this makes Angela have visual impairments.  There is noting drastically wrong with her actually eyes -- it a brain issue as her brain is unable to comprehend what her eyes are viewing.



With this said -- Angela's eyes are healing.  When she first came to us over six months ago I would have said with full confidence that Angela was blind, with the exception of her ability to see bright lights.  She did not focus her eyes and only occasionally would appear to be seeing something.  She is totally different now.  She is using her eyes more and more to look at faces and objects and can even aim and grab objects such as toys at the table on on her toy gym.  Stimulation, lots of love and a whole lot of God's provision does amazing things!



Since we knew that she could see we needed to find a way to learn exactly what she could see so that we could better push her to her full potential.  We learned about the low vision clinic at the Eye Institute of Philadelphia and immediately knew it was a perfect match for our family.  The eye exam is  specifically designed for children and adults who are not able to do a traditional eye exam.  The exam is very intense and looks both at past history and also took into consideration a lot of what I as her mother thought about her vision.  The exam took about two and a half hours, and although it was a long visit Angela did amazing and they kept her engaged the entire exam.



Through the use of specialized tests we were able to figure out what stroke width Angela is able to see -- meaning if she were reading  -- what font size she would be able to read.  One of the coolest things I got out of this entire exam was that fact that the doctor said to me, "When Angela reads you will need to make sure the print is enlarged to this font size."  Did you catch that?  She said, when she reads.  Amazing.  I loved that she saw Angela for the intelligent little girl we know she is.  We were also able to determine a little about her field of view.  It appeared that she is limited on her left peripheral, but they were not confident to say she has no vision in this area as Angela was pretty tired at that point.  They were able to say that her right side is very strong so for education purposes things need to be presented to her right field of view and for therapeutic reasons we should encourage her to look to her left field of view. We will be going back next month to explore her vision even more including looking at color preference and depth perception.

Does your brain hurt yet?


We left with a prescription for glasses since she also has a significant astigmatism and is also mildly near sided.  I left with confirmation that Angela sees more than what she often shows the world she can see.  I left with excitement -- excitement of possibilities and hope for Angela.

Not that I really needed confirmation that she is fabulous -- but it always helps!