Monday, April 25, 2011

{The Day After}

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I often wonder what that day was like -- the day after people witnessed first hand that empty tomb.  I mean, just think about it.  It's so easy to think of it in terms of a nice story but if I picture myself in the shoes of the women who went to go mourn Jesus at his tomb and instead saw that it was empty and only the cloth that wrapped his dead body was left behind -- can you even imagine the crazy adrenaline rush that they must have experienced.  It's seriously mind baffling.

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Easter has always been a great holiday but I will be the first to admit that I didn't always think it was super cool for the right reasons.  I love candy and sadly I think that in the past the yummy candy was all my mind was focused on.  This all changed since Gavin's death -- after all that's really what easter is all about -- Jesus' death and the possibility of new life that came from his resurrection.

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Yesterday we spent sometime with Gavin at his grave.  I just cant help but be filled with an amazing hope standing looking at my little boy's grave.  The though that this grave is only but a symbol of his life -- a place for his sick, frail shell to rest and the realization that my little boy, his thinking, feeling and sweet spirit is not stuck below that ugly mound of dirt -- it's just crazy.  I often wonder if that surge of hope, joy and peace is a tiny glimpse of what it was like for those women who found Jesus?

I just wonder.

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We had an amazing time as a family yesterday enjoying each other and taking time not only to remember the amazing resurrection but also taking time to remember our little boy.  I've said this before -- but i just wish I could describe what it is like to have all three my babies in one spot.  Being at his grave just feels right.  I know it's not for everyone, but for this mommie it's just right.

Thursday, April 21, 2011

{Special Needs iPad: App Review}

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Last week I purchased this very cool app for Angela to play with.  I had no idea of just how cool it really was until I myself started playing around with it.  The app is called Alpha Baby.  They offer a free version but the in app upgrade is inexpensive ($0.99) and makes it way more customizable.

Some of the apps great features are that you can record you own voice for almost everything -- all the shapes, colors, letters and photos.  You control how big the graphics are displayed and also how many graphics you want on a screen at any given time.  This is very useful for kids with visual impairment.  Sometimes too many object on a screen can be very difficult for Angela to comprehend -- simple is best for our little girl. The option of size of graphic also comes in very handy when using the quiz mode, which I'll touch on in a sec.

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When Angela touches the screen, which we have chosen as white but also is totally customizable, the objects appear.  You can choose to display a mix of numbers, letters, colors and images or just simply pick one or a mix of the different learning topics.  Once the objects are displayed, which also are accompanied by ether a computer voice or your own, she is able to drag the objects as well as magnify and shrink it, depending on how long she holds her hand down on the screen.

The iPad is amazing for kiddies with special needs, particularly Cerebral Palsy, but often time the accuracy of the child's aim is poor, which makes using some of the app a source of frustration.  Well, this app has a built in quiz feature, which is a great tool for practicing the accuracy of each touch.  I'm sure it was meant as a learning tool to find a specific number out of a series of numbers, letters, colors or photos, but if you turn down the number of objects displayed be set at one and enable the quiz function the it becomes a game of hit the target.  Once the target is hit you can use the computer's voice to reward or you can record you own exciting message for you child to hear -- so very cool!

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We uploaded lots of photos that represent Angela's daily life like, toys, iPad, walker, and family members and had each of us record our own voice on the different photos.  So when Angela hits a photo of Adam, she hears his voice saying, "daddy".  This makes the image she sees with her eyes connect with the voice she hears and helps her overall understanding as well as her visual abilities.

This app gets a two thumbs up from this mommie!

Click Here to read my other special needs iPad app reviews.

Wednesday, April 20, 2011

{Less Than Perfect}

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I am not perfect.  Shocking, I know.  This seems like such a basic concept -- no human is perfect, yet for some reason I make myself feel like I need to defy the odds -- reach perfection in every area of my life.

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This thinking has really messed with me in so many ways.  I get really good at something then throw it all away simply because I couldn't reach perfection -- there was someone better and that didn't sit well with me.

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Many people don't know that I studied classical guitar is college.  I was really good.  I memorized an entire Bach cello suite for my senior recital.  I would get up every morning before the rest of the dorm was awake and hit the studio and play for hours making sure I hit each note with perfect tone. After I left college I sold all my guitars of eBay.  I was frustrated that I wasn't the best.  I was so dumb.

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This has translated into many different areas of my life.  Last year before Angela joined our family I was doing so good with the gym.  I had lots of time and I didn't have a little one to watch after.  Now I somehow keep telling myself that since I can't get on the treadmill and run three miles since i have to keep Angela with me then I really should just not bother at all.  Again -- I can be so dumb. This week I'm forcing myself to settle and realize that being less than perfect or less extreme is totally ok.  So I'm just walking with Angela on the indoor track -- and it's working out just fine.

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I think God loves us less than perfect.  It's in our imperfection that his awesomeness is most awesome!  I just need to keep telling myself this.  There will aways be better photographers than me -- it's doesn't mean I need to throw it all away and find something else to obsess over.  I am me -- no other person, and God really digs this girl just the way she is.

Monday, April 18, 2011

{Pureed Food for Children with Cerebral Palsy}

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Ok, so sorry for the official sounding title, but after trying to search the internet with those exact search terms and coming up empty handed, I wanted to make sure other clueless in the kitchen mothers with children with feeding issues, like me, could find what they are looking for.

Anyway, Angela is an eating superstar -- really she is.  I originally went into this whole feeding thing really just wanting to give Angela the experience of food.  I figured she would always be tube fed -- and that was ok with me.  Well, I think Angela might have other plans.  She is beginning to take almost 4oz of pureed food during her evening feed.  I was thinking if I could give her a meal by mouth that had enough calories to supplement her evening feed we may just be able to get her off those darn tube feeds someday in the future.  As a disclaimer, we are moving forward with extreme caution.  Even though Angela did pass her swallow study, she still does not know how to swallow very well.  We are using tons of oral stimulation including using her electric tooth brush on her tongue and cheeks before meals and also only giving her 30mins to attempt to feed, which is funny since can eat up to 4oz now in about 15mins.  Anyway, we are watching for any and all signs of distress -- but so far she really is doing great!

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I know a lot of moms who read this blog have children with some type of medical or developmental issue, but for those who do not, let me explain why eating is so difficult for Angela.  Basically her muscles in her mouth -- just like throughout the rest of her body just do not function in the way they should.  Angela's mouth has very low tone.  It's hard for her to keep her tongue and drool inside her mouth and she really does not yet have an intentional swallow.  This makes feeding very difficult.  

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Because feeding is so difficult, I want to try to condense her calories in the smallest about of food possible. With the help of some friends and also my own ideas I came up with this simple recipe:

4 Average Size Sweet Potatoes, Boiled for about 20min until Soft, Peeled and Cubed.

8oz No Sugar Added Canned Pears, Cubed.

2tbs Coconut Oil

2tbs Agave Nectar

1tbs Cinnamon

I basically threw this all in my below average blender and made sure all the chunks were out.  I used a large 60ml syringe to transfer the puree into the baby food containers, this way I could ensure there were no chunks in the food.  I was able to fill seven 4oz jars.  I used my less than average nutrition skills to calculate the nutritional content in each jar.  Each 4oz jar has about 140 calories and about 5 grams of fat.

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I had Madison taste it and she gave it two thumbs up!  I can't wait to see what Angela thinks of it tomorrow!

Wednesday, April 13, 2011

{Learning To Eat}

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On Monday we packed up and headed down to duPont for Angela's barium swallow study.  When Angela was born she was taking a bottle but because of her incredibly poor suck she was not gaining weight and it was decided that a gastronomy tube would need to be placed.  Although she was not showing signs of aspiration like pneumonia or choking, during the hospital stay for the tube placement they decided to do a swallow study because of her presentation -- they just couldn't believe that she was not aspirating.

Her original swallow study showed complete frank aspirations, which means that all the food that she was putting in her mouth was going directly into lungs during the test.  This is obviously very bad.  At that point it is a bit blurry.  Seems Angela was made completely NPO, meaning she was not allowed to take anything by mouth.  During that next year of her life she was not given the opportunity to do anything orally hence the extreme oral aversion when she came into our home in December.

As soon as Angela joined our family she started to take off developmentally -- she was gaining strength as the days went by so we really wanted to give her a shot at taking food by mouth.  So this past week we gave her a second chance at the swallow study.  They placed six small cups of barium all with different thinknesses ranging from thin liquid like water all the way up to a thick puree.  Angela sat on the Xray table with the camera facing her head and they took video of the barium as it went down.  

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To everyone's surprise she was able to swallow and protect her airway on all the different consistencies -- this is huge, amazing news.  The speech pathologist was totally surprised and the room was filled with so much excitement!  Angela is a different child than she was just a few months ago, it's almost hard to believe!

We left the study with a go ahead to start feeding trials with Angela at each meal for 30 mins.  She is allowed to take as much as she will tolerate in that 30min time frame, which has been about 1.5oz.  So cool. I wouldn't say that she totally loves eating but she certainly is tolerating it.  It's more just a battle of wills -- she doesn't like doing anything mommie or anyone actually makes her do -- so typical almost three year old behavior.  She really does not know how to voluntarily swallow and move food from her tongue to the back of her throat -- she this is very hard work for her.

Feeding opens a whole new door for Angela in the world of development. Feeding is a huge benchmark for speech and sensory development, not to mention drool control.  I am head over heals proud and in love with this little girl -- she is totally beating all the odds stacked up against her!

Tuesday, April 12, 2011

{Running a Race}

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This weekend We headed to Hatfield, Pa for a ten mile race that Adam had decided to do.  We had a great time -- and of course watching my amazing husband cross the finish line was so cool.  This race also offered a kids half mile fun run and of course Madison decided she wanted to run.  She has been preparing, just like daddy, for a few weeks now.  I wasn't so sure how she would do considering when I take her to the YMCA and let her run the track she starts complaining and pleading for water just a few strides into her run.

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To my surprise she did so great!  The kids were so fun to watch.  Once that starting gun sounded their little legs ran so darn fast -- everyone was yelling to them to slow down, so they would be able to finish.  A few things really stood out to me as I watched Madison race.  Of course I was so darn proud.  I think as parents anytime our children step out of their comfort zone we as parents get this sense of total pride.  But as I watched Madison come down the home stretch I saw so much more than just her stepping out of her comfort zone -- she was so stinkin' proud of herself.  

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Out of all the things I want to instill into my kids is self confidence.  I totally lack in this area and I don't what to be the way my kids live.  If Madison has self-confidence I really feel like all the other values that we really want her to grasp will fall into place.  If Madison is full of confidence, making a tough choice that goes against the crowd might just be a little easier.

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As a mommie I need to make sure that I am constantly building my little girl up (and Adam as well).  At time I know I can place my expectations just a tad to high.  I want her to achieve goals -- not set them so high that we set her up for failure.  Last week we were sitting on the couch and Adam and I had a talk with Madison about what it means to set goals for yourself.  This was an interesting conversation with a six year old.  We talked about how she needs to first try to run one lap and once she achieves that she could shoot for two.  Once she can run a half mile then she can push herself a little bit more.  She thought this was pretty cool -- and the idea of one day running with daddy seemed to spark her interest.

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My family fills me with so much pride.  I love walking into a store or an event such as this race and being totally thrilled to be in the position that I am in -- a mommie to three amazing kids and a wife to an amazing man.

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So proud.

Thursday, April 7, 2011

{Permission to Dream}

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The other day when I was driving in the car I was thinking hard about  life after Gavin's death.  For me personally, sometimes it just feels good to go back and remember -- remember all the details, the good and also the really difficult and painful memories that come with that time.  The busyness of life can sometimes not allow me to just sit an simply remember -- it feels so good just so sit and think.

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It seems like in those moments where I allow myself just think I am overwhelmed by beautiful orchestration of every little detail of our lives.  After Gavin's death God began to put this intense promise for hope and restoration like none other I had ever felt or imagined.  It was around this time when I wrote this post about the analogy of Spring and the promise of something new -- the idea that out of the frozen ground of winter God begins to warm and cultivate new life -- Spring arrives.

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It was at that point that I began to understand the concept of allowing myself to dream.  Allowing God to place the biggest dream that makes no sense to human minds -- like experiencing joy in the midst of death and finding the possibility of wholeness in a situation that seems broken beyond repair.

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As I was in the car thinking I began to remember holding onto that promise of Spring -- not knowing exactly what that looked like for us and what it even meant -- I just new it meant restoration -- anything but the deep painful mourning we were walking day in and day out. 

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As I took the girls out the other day during Camp Madison I began to get this churning of excitement again -- could it be?  Could we be actually experiencing the season of Spring, the idea that God had place in my soul after Gavin's death?  


I totally think we are.

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Dreaming big -- and I'm not just talking about dreams in the physical sense, although God surely wants us to dream big -- but rather, I'm really talking about those life altering, soul changing dreams for wholeness, understanding and finding true joy and peace.  These are the dream that defy the impossible -- these are the dreams God gives us permission to have.

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I am humbled and also scared out of my mind for the dreams God has allowed me to dream -- but then again, the pressure is really off me.  All I need to do is hold the dream tightly in my soul and allow Him to push that dream into reality.

Wednesday, April 6, 2011

{Hot Pink Wheelchair}

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Last week we went down to DuPont and picked up Angela's very first wheelchair.  Since Angela joined our family we have been using Gavin's old KidKart to give her proper seating and support.  The KidKart worked great for her but number one, I just felt Angela needed her own wheelchair and number two, it could be difficult at times using Gavin's chair for obvious reasons.  So we decided to get her, her very first wheels.  At first I was so excited.  After we left the first initial fitting I was feeling great, it seemed like this chair was going to be amazing -- then we picked it up.

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On the positive side this chair, which is a totally customized Invacare chair, gives her amazing support.  It's just enough without over doing it, forcing her to do a little work in holding herself up.  Angela is extremely hypotonic or floppy throughout her core and this chair has really great lateral support for her.  It is a solid steel frame which means that it hold positions very well and does allow for a lot of give, which is what we needed.  I also love that we could pick out the color.  We ordered bubblegum pink but we got purple -- I know, so trivial, but still I really wanted hot pink.  We still call it hot pink anyway. 

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The downside to this chair is that is a beast. My body is so sore from maneuvering this crazy thing around.  In all honestly this chair is just as difficult as the 300lb power chair we had with Gavin.  Although it is not as heavy it is still very heavy and I cannot lift it by myself.  Thankfully we do have a wheelchair accssable van but it is kinda bootleg.  The floor is not lowered -- it just has a new floor with tie downs and a ramp.  Therefore -- it has a more than ideal ramp incline.  This chair is so difficult to get into the van -- but we insist on keeping our crazy lifestyle and again we will just deal with it. The chair feels huge.  It's probably not as big as what it feels like, but I still think the design is kinda poor.  At times I feel like my little 19lb peanut is like three feet away and surrounded by jungle of steel -- but again, I'm sure that's a bit of a stretch away from reality.

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On a totally different note, we took Angela for an evaluation to begin the IEP process and figure out what exactly we are going to do once she ages out of the birth to 3 program.  We are not sending Angela to school.  We are firm on this for many reason.  The evaluation was amazing -- in fact I was so worried about a few different things and once I left the evaluation they proved all my worries totally false.  I felt like as soon as we walked in the room the group of therapist saw potential.  I actually at one point had to shoot down one of their ideas and say, "I don't think she is there yet."  The PT told me that she thought she was really in there, which was one of my major concerns.  Many times Angela kinda shuts down when many voices are present.  She just wants to listen to you and try to figure you out by the sound of your voice and doesn't really physically show that she is really thinking.   The PT's comment made me smile from ear to ear.  Angela is my child and I want people to see what amazing potential and spirit she has inside.  

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I went into the meeting with a boxing gloves on ready to fight for Angela, but later found out there was no need to fight.  They seemed to see they spark that Mommie and Daddy see, which was just totally awesome! I seriously can't wait to see where God takes this little one in a few years.  She has so many things going against her but little by little I can see how each one of those obstacles can totally be overcome.

I really believe that she is an amazing miracle waiting to happen, but then again i guess that miracle is has already begun!

Monday, April 4, 2011

{Three Day Rewind}

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Camp Madison was a huge success -- spending time with Madison and celebrating the good choices she has made felt so good, not only for Madison but also for Adam and I.  Madison is such a vibrant and spunky little girl -- she thrives on positive parenting.  Taking time to just celebrate her and who she is will have lasting impact on her over the next few months and we hope -- her lifetime.

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We started camp Madison on Saturday by dropping Angela off at my parents and heading down to Philadelphia to the Franklin Institute for some fun.  We lasted about two hours at the museum and then Madi was done.  It was so much fun but Madi is still just a bit young -- but we certainly have no regrets. We walked through the city to find a place to eat and then headed home.

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After we got home Daddy went and picked up Madison's favorite sandwich from a local sub shop.  We then spent the rest of this right just enjoying being a family and watching a little TV.

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Sunday was day two of Camp Madison.  Daddy made Madison a yummy pancake breakfast and then we spent the morning at church.  Madison and I then headed out to the movies just her and I.  Madison requested to see Hop -- which as a side note I didn't really enjoy.  We had a family dinner to go to that evening so our dinner plans were changed.

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Today we ended Camp Madison on a great note.  After school Madi, Angela and I went out for a little photo time to show off her Camp Madison tee and celebrate her sassy personality!  We had a really fun time -- Madison just cracks me up in front of the camera.  She is either on -- or refuses to do it at all.

Today she was totally on.

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Originally we had planned to have tonight be family craft night, but since the weather was so nice, Madison decided that she wanted to go to the park as a family.  We had so much fun and even Angela was loving the park.  Angela has been getting so strong and was doing great is a regular baby swing.  

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After the park we went and had an ice cream treat and ended Camp Madison sitting on the curb at McDonald's laughing and just enjoying being a family!  

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I fall more in love with my family each and every day.  I look at these photos and I just can't even believe how much my little baby girl has grown.  I also look at these photos and am in awe of how much our family has grown and the amazing ride these past six years have been.  God has totally shown his amazing love  and provision to us -- it truly leaves me speechless...