Thursday, August 16, 2012

New Chapter...

Summer has been busy!  Mostly good...after Jackie was hospitalized in April for 4 days with severe kidney pain and vomiting they discovered that her bowels were completely impacted also.  All that aside, when we left the hospital we really believed that we had a handle on these issues at least.  She had never once complained about belly pain before so we thought maybe the combination of her kidney and bowel was what caused her severe exhaustion and at times not being able to motivate her to do anything.  May and June we were extremely optimistic as her mood improved immensely, she was thrilled to be outside playing with her sisters, was swimming the day we opened the pool...I had my happy girl back!  She finished school with A's and B's and we were all so proud of her!  As much as I wanted to believe that her new medication would continue to keep her feeling great, it is hard sometimes to not wait for things to change again.
At this point we have seen the cardiologist several times and ran all the tests for them to tell us that they are inconclusive, her neurologist has no explanation for her ups and downs and our family doctor just tells us that we have to revel in the ups.  How frustrating!
In the last few weeks, she has been really struggling with body temperature, when it is hot outside she will say she is cold, the pool is 80 degrees but she refuses to swim because she is freezing ...and the only time she really seems happy is when she gets home from youth group on Wednesday nights. 
She is very excited for school to start and this year all my girls are doing cyber, I am SO looking forward to them being home!  Sometimes I think she just does better with routine...and during the summer we try not to have one! 
Jackie's sisters get frustrated because they want her to play and swim and all I can do is try to encourage her to appease them :)  This is our every day...I am working hard right now to find opportunities for her to be involved in things that she really enjoys, being with young children and around animals.  She will be 16 in November and wants nothing more than to get a job, this is my new mission ...finding a small job where she will be accepted for who she is and safe, of course.  I admire her desire to be independent and we try very hard to allow her to do so.  Not so easy in today's crazy world. 
I know I am rambling, that is what happens when I only write every once in a while, but it is hard sometimes not to let my head go in 15 different directions :)...My newest brainstorm is to build a local foundation for children like Jackie...raise money for research for ACC and establish local resources to assist families like ours connect our children with the outside world.  I am stuck on where to start...if there is anyone out there that has any experience or knowledge in this area, I could really use some help!  I have tons of ideas, I know there is a huge need, especially in our area...I just dont know where to begin.  There are so many kids out there that have disabilities but also have the wants, desires and heart to be so much more but don't necessarily have the ability to voice it. 
Well, everyone is waking up, time to go make breakfast and get them ready for the day...the weather is gorgeous, think we will just spend the day by the pool.
As always, thank you for reading, your families are in our hearts and prayers always!

Monday, January 30, 2012


Yesterday morning I dropped Jackie off at a local church so that she could take a bus with her bible study group to Philadelphia.  They left at 7 in the morning to spend the day with homeless people near Chinatown.  They had church service and prepared an enormous breakfast to share after.  I don't think I have ever been so proud of anyone!  She was so excited to text me and let me know that she was making eggs with her new friends, when we picked her up in the afternoon she could not contain herself as she told us about the men and women that she met.  She did not care that one was missing a leg, or that they hadn't had a shower in weeks.  She hugged each of them that wanted, was thrilled to be serving them, and laughed all day as they shared stories with her.
Her disabilities didn't matter ALL day.  Not one of her "new friends" complained that she talked too slow or that she was not dressed like your average 15 yr old.  As a matter of fact, she cannot wait to go back!
Jackie may have been born missing part of her brain but God made up for it when He gave her the biggest heart! 
Acts like these are not uncommon for Jackie.  She is very involved in our youth group at church, she will spend hours talking to a friend that is down, and hurts when her sisters hurt.  She has wanted to do something like this for a long time but we were always hesitant.  What if someone takes advantage of her, what if she gets lost, what if she has a seizure and she is 2 hours away?
At church on Saturday night our Pastor was talking about having faith and how, when interviewed, so many people age 70 and above regret not taking more risks in their lives.  I decided at that moment that I have to have more blind faith.  Faith that our God knows our purpose, has planned our tomorrows and loves us more that we will ever know.  I thanked Him for my beautiful family and promised that I would try to be more trusting in Him.
For so long I have tried to protect Jackie, make all her decisions for her, hold her hand in just about everything.  I am the same way with her sisters :)  I have come to accept that God has a plan for her too, that is why He gave her that enormous heart!  I can only imagine how she blessed those "new friends" on Saturday.  I can only imagine the faces that smiled at her, that probably haven't smiled in years and I thank God that He made Jackie just the way she is and that He trusted us enough to give her to us.
So for those of you that are new to ACC, or not so new but question your child's future, please let these words be encouraging to you.  It is amazing what our children are capable of with just a little bit of encouragement and guidance from us and unwaivering faith in Him!
As terrible as I am at keeping up with this blog please e-mail me with questions, advice, encouraging words of your own ANYTIME! 

Tuesday, May 17, 2011

The beginning...continued?

Let me start off by apologizing to the few that are following this blog.  I guess I got a bit overwhelmed and it seemed that every time I tried to write, tears would block the screen.  Jackie has been through so much in this past year, tests and doctors and more doctors, only it seems we never come away with any answers.  Since I wrote last (over a month ago) Jackie has been braced for her scoliosis, diagnosed with Bertollotti syndrome and we have discovered that she has 4 bulging discs in her lower back.  The doctors insist that they are not bad enough to cause the pain in her back and legs, mommy disagrees :).  She has been treated with 2 different hormones for "menstrual" bleeding and then taken off of them after they didn't do anything.  Now our primary doctor is sending us to a hemotologist to rule out a bleeding disorder (that is tomorrow.)
I requested a copy of our original brain MRI only to find out 4 years later that she has colpocephaly.  This is a common disorder with ACC patients however the two do not always go together.  I did not even know that she had it and we have been going to PT trying to stretch and loosen muscles that will probably never budge!  Of course, we will continue PT if only to stay where we are at.
In the last 6 months, Jackie has progressively lost her energy.  She explains the best that she can, that her legs "go numb" and she is "too tired" to play with her sisters outside or even go up the stairs sometimes.  We have tried vitamins, protein, extra sleep at night, even naps during school.  Nothing seems to make a difference.  And once again, the doctors don't have any answers. 
Our last neurologist appt 2 weeks ago, they told us that Jackie is suffering from "migraine variances" and at the onset we should give her advil.
That about does it for our recent medical issues, so sorry to seem negative but I wanted to get it out of the way :) 
Despite Jackie's absolute exhaustion, we celebrated our angel and God's amazing grace as Jackie was inducted into the National Junior Honor Society last Wednesday evening at a candle ceremony where Jackie was one of only 4 8th grade students handpicked for this honor.  (YES, WE ARE SO PROUD!)
That evening was a HUGE reminder to me and I hope it will be to you too, that just because a doctor may tell us that our child has a disorder, does not mean that they cannot reach for the stars and grasp at the moon.  I know our story is a little different because Jackie was diagnosed at 10.  I never treated her any differently than I do my other children and always pushed her even when others tried to discourage me and try to convince me that maybe Jackie just couldn't do it.  We still don't treat her any differently, she has the same responsibilities and chores at home and we expect the same out of her at school as we do her sisters.  Sure, it may take her much longer to accomplish the same thing my 11 yr old can do in 5 minutes, and maybe she doesn't do it the way that I might, or maybe she will walk downstairs and forget what I asked her to do.  But at the end of the day she feels good about herself, and we know that teaching her again how to load the diswasher, or reminding her 5 times to feed the cat, will make her tomorrows just a wee bit easier.
So even though I may feel like I am banging my head up against a wall sometimes trying to get to the why of our latest medical mystery, I thank God at the end of every day for Jackie's latest accomplishment, another A on a test, an afternoon that she may go play outside with her sisters for 15 minutes, and most of all the amazing spirit that He blessed my angel with.  That even on her worst day, she rarely gets angry, she knows that tomorrow is a brand new day and that no matter what mommy and daddy love her more than she can understand and that God is always with her, through every needle, every day that is a struggle, every time that she gets frustrated.
If you walk away with anything after reading this, if your child is 14 like Jackie or still growing inside your belly, please do not let anyone ever tell you that your angel cannot do something, instead, give them every means to try to do it and the encouragement to keep trying.  There is nothing better in the world to us than when Jackie accomplishes something that she, and sometimes others, never thought she would be able to do!
Thank you for reading, and as always, please feel free to send me questions, comments, and anything in between.  I pray that Jackie's story can bring hope to those of you that need it, encouragement for some that might doubt tomorrow and maybe answers to your latest medical mystery.  I promise to write more often, maybe not better, but more often!  God bless you and your angels!


Sunday, March 27, 2011

The Beginning

     Let me begin by saying that the reasons behind this blog are many.  I am a very proud mommy of 3 beautiful, brilliant, loving, funny (I could go on and on) little women of God.  One of my angels, Jackie, was born with ACC or Agenesis of the corpus callosum.  It is a rare birth defect in which there is a complete or partial absence of the corpus callosum (the band of tissue that connects the two hemispheres of the brain.)  Jackie was not diagnosed until right before her 11th birthday, following a seizure and terrible fall down a full flight of stairs on a very early morning as we were getting ready to go to school.  Most of her injuries were superficial but included a horrible cut right above her eye.  After a trip to our local hospital and then her dr's office, because the hospital neglected to stitch her, we were sent to Dupont in Wilmington, DE where they specialize in pediatrics.  Her physician felt that she should undergo further tests to get to the bottom of why she had the seizure.  After a very long day, a lot of blood work, x-rays, and finally a cat scan, we were referred to a neurologist.  That is how we found out, a few days later that Jackie was born with ACC.
     Now to the very beginning...Jackie was born at an absolutely gorgeous 7lb 9oz.  I was blessed with a VERY short hard labor, but the dr did have to use forceps because my pelvis was just to narrow.  Jackie screamed almost immediately and nursed just as quickly.  "Not bad for the first time" I thought and imagined the perfect little baby in my arms, sleeping peacefully at home and smiling up at mommy all day. 
     Our short hospital stay was without any red flags, Jackie ate and gained weight her first two days, like a champ.  They sent us home with some diaper rash cream and a free bag and told us to put her in front of the window for at least 3 hours a day for her jaudice.  Once home, I spent the first 9 weeks holding her and rocking her, with neither of us getting any sleep.  After several visits and phone conversations with the pediatirician, it was determined that my milk was not filling her and that we should put her on formula.  Although that seemed to fill her a little bit, her fits of unconsolable screaming did not stop.  We then realized that she was not having normal bowel movements and was in constant pain.  My 3 month old was constipated!  We tried every different formula on the shelf with no relief until finally it was recommended that we try medicated formula for colicky babies or babies with digestive troubles.  Finally, that seemed to bring some relief.  Of course, by this time Jackie was used to be held by mommy and was not about to give that up!  Or that is what we were told and believed at the time.  It took everything in me to get through each day but I was so crazy in love with this little girl that I didn't care that I had to walk the halls all night or take her outside in the cool air to distract her.   Jackie was never above 75% on the growth chart but rolled over, sat up, walked and talked on time, if not early!   
     Our first couple of years were filled with a lot of smiles and laughter, MANY sleepless nights, trying so hard to introduce her to solid food and some more smiles!  The doctor always told us that she would eat, it might just take time.  Right around Jackie's 2nd birthday she ate mashed potatoes and corn, yay!  I was so excited!  Everything else until this point was a bite or two at best.  Now the doctor told us that her body knew what she needed and she was fine.  I did not know any better as a first time mom and she seemed happy most of the time, when she wasn't banging her head on the floor in a tantrum or screaming in the middle of the night. :) Jackie's bottle was about the only thing that could console her when she got to that point so as you can imagine she was still taking one at 2 years old (bad mommy!)
     I always chalked up Jackie's tantrums as just being stubborn and the doctor's said that she was so smart that she didn't want to nap or sleep at night because she was afraid she would miss something.  She spoke well for a toddler, I thought and loved everything!  People, animals, books, the park...looking back now, it seems that she was happiest when we were out and about.
     Her sister was born in 2000 when Jackie was 4 1/2.  Jackie adored her and doted on her day and night.  I was very fortunate that Danni slept through the night from just about the beginning and loved her 4 hour naps in the middle of the day.  At this point Jackie was in preschool and doing well.  I still had many sleepless nights but somehow it didn't seem to effect her, she was a very energetic 4 year old.  There were some concerns about Jackie's fine motor skills, cutting with a scissor, holding a pencil etc. but she was left handed and always seemed to get it eventually.  It wasn't until her early years in school K-2 that I really noticed a difference between Jackie and her peers.  And then the headaches started...
     Jackie was seen by a pediatric opthamologist and given glasses.  At this time we were told that Jackie had ambyopia in her left eye and she started patching for 45 minutes a day.  Later an abnormality of the macula in her right eye was found.  I spent these early years struggling with school, trying to explain my concerns where speech and reading were concerned.  I also noticed that she did not interact with her peers the same that other children her age did.  School repeatedly told me that her slowness was due to her need for perfection and that she was shy.  In 2005, at 8 years old, we saw a CHOP pediatric opthamologist only to find that her vision was 20/40 in the right and 20/125 in the left.  She also had left astropia, and high hyperopia.  We began patching 4 hours a day and her prescription was changed.  This seemed to finally help with the headaches.
     Meanwhile, Jackie's smile and enormous heart for people and animals lit up every single room that she walked into.  She was always drawn to younger children or children that suffered from their own handicaps.  Looking back now I believe that even though I knew Jackie was not the same as her peers and her now 4 year old sister, I was crazy in love with my girls and easily blinded.  Not to mention, the doctors, school therapists, teachers etc. never seemed to validate my fears in the end, so who was I to be so worried?  Jackie played soccer from the age of 4, never complained during physical activities and we studied hard from a young age to keep her at grade level.  Everyone loved Jackie for exactly who she was.
     Jumping ahead...the headaches and now dizziness once again became a constant complaint (even though Jackie still smiled!)  Her presciption for her glasses was changed every six months when we went to the doctor, with very little relief.  Other than that though, Jackie was the healthiest of my now 3 girls.  Her youngest sister was born in 2004.  Jackie never even had a cold.  Watching the 3 grow up together the differences were obvious at times but nothing ever screamed out at me. 
     As Jackie got older, her low muscle tone and strength became evident, her speech became a greater issue, it wasn't necessarily the way the words sounded but how long it took her to put together her thoughts.  The social differences between Jackie and her peers were more obvious although Jackie was never bothered by it at all.  She was still drawn to younger or learning disabled children.  As she moved up in grades, schoolwork became very challenging.  Every teacher loved Jackie to pieces but was concerned about her ability to comprehend the information.  There were many of nights that we were still struggling to understand homework at midnight but even frustrated, Jackie never gave up!
     October 2007...blood curdling screams from the bottom of the steps, I run to find Jackie horrified and covered in blood.  Two nerve racking days to follow as we pace the floors and pray after seeing the neurologist and having a cat scan among dozens of other tests.  All we prayed for those two days was that whatever was going on in her little body, we did not want to lose her but most important we certainly did not want her to suffer.  Finally the heart pounded as the doctor asked me to sit down.  He started off by telling me that it was very important I understood what a miracle my Jackie was.  That after years of pediatric neurology it seemed almost impossible that the results of the MRI could belong to the same almost 11 year old girl he met just 2 days before.  I was petrified!  "The good news" he says, "is that it is not fatal"  "the bad news is that it is not curable" and he continued on to explain what ACC was and how impossible it was to predict her future.  All I heard, even as I took notes, was that we were not going to lose our baby!  I cried, for so many reasons.  One being that for the first time  in almost 11 years, some things finally made sense.  Our conversation lasted a while, I asked questions, he explained that although he may not share our Christian faith, Jackie definately had angels, and had we not perservered and pushed her, who knows how many more difficulties she could have.  I explained that although we may not always understand, God obviously has a huge plan for her life and I could not wait to see what it was.
     She was immediately seen for more tests but more importantly Mommy started digging and finding everything I could on ACC, most importantly anything that could help me help her!  That same week through the Angels Around the World website, I found information on teaching children with the same disorders and handicaps (eyes and all) and Jackie.  What a blessing! and answer to prayer!  It was only the next day that I brought copies to the school and explained her diagnosis and we started working on an IEP.  I kept digging and kept sharing the information.  School became easier almost immediately, she was able to understand more and they moved her seat so that she could see, they stopped using green and red on the board, since we found that Jackie didn't see those colors and began a program reading with the dogs.  I could not be happier!  We continued to search for ways to make things better for Jackie at school and she progressed well academically through 6th grade.  I had my struggles as a mom, when I felt like the school was slacking off a little but a visit and/or phone call and we seemed to get back on track.  Unfortunately, Jackie's peers became an issue.  As I said earlier, she was never at the same level socially as other children and this made her a target for "bullies".  A certain few seemed to begin targetting her and no matter what the school or I did, it didn't seem to make a difference.  Of course, I thought more could be done.  We started looking outside of the district and in 7th grade, Jackie and her sisters started going to a local charter school.
     Jackie was suffering from "silent" seizures at this time and more headaches and dizziness but through it all continued to do well in school, play soccer, be on the youth leadership team at church and love (most of the time:) her sisters.  As I said, the stiffness in her muscles? became more evident, her toes and fingers started to curl, she began losing her hair and once again, eating certain foods became an issue.  We continued seeing her neurologist and opthamologist every six months and through it all Jackie continued to be the light of our ever single day.  Even her sisters will agree that Jackie is the one they go to for love, referee an argument, play a game, you name it.  Jackie began having mild tremor seizures in 2010 and was put on Lamictol to attempt to keep them under control.  The worst part of them seemed to be the migraine headache that followed.  During this time Jackie also went through puberty and started menstruating, which is very hard for her to understand but God bless her, she never complained more than saying it was a pain in the butt! :)
     On that note, I am going to go play with the girls but before I do I want to go back to the beginning and share my reasons and inspiration for starting this blog (which for those that don't know me, is a huge accomplishment, as I am not very advanced when it comes to the internet or computers in general, for that matter, and I am certainly not a writer :)  I have come to realize recently, as Jackie's medical issues become more complicated, that it can be very lonely at the end of the day as a parent of a disabled child.  Especially a parent of a child with ACC, as it doesn't seem to be a very well known or understood disorder.  So my first intent is to share our story with other loved ones of someone that suffers from this disorder.  I have learned from and been lifted up by other mom's out there on several occasions and only pray that I might do the same for someone else.  My other hope is that there are other parents, doctors, therapists that might share insight with us as I continue to blog and share our story.  This past year has been a rough one (details will follow...)  I also pray that by sharing and connecting, together we can help to make the world a little bit more knowledgable about what our little angels go through.  I know for us, we are still trying to find a specialist locally to try to make a little more sense of Jackie's different diagnosis's.  As of today, she has been diagnosed with cheiroarthropathy, PCOS and scoliosis.  We are still waiting to see the GI doctor in referrence to her trouble swallowing, and follow up orthopedic doctor to read her MRI of her foot and her back. 
     Thanks for reading, PLEASE feel free to share any information, stories, words of encouragement, your struggles and triumphs or anything else!  May God bless you and the angels in your life!