Knocking

It is amazing the strategies that you will formulate, the inventive ways you will find to do things, the drive that pushes you when your adrenaline kicks in. We've all been pushed up against the wall, pushed to our limits, thought there was no way out.  From time outs to grounding, to losing a job.   Whatever your wall is, we've all been there, from children to adults. When it seemed hopeless that there was no way out of the situation, you found your way.  The first breakup, when you felt like life would not, could not go on... do you remember?  You found your way out of the situation, life went on and still does.

At first with Jack's health we didn't really say much to anyone.  As crisis' arose and we started to realized that nobody really had answers we started to talk. A friend who has stood by our side from day one, who actually brought Jack home from the hospital...story for another day... reached out and asked her pediatrician what would she do if this was her patient?

Her answer was the NIH.  The National Institute of Health is a government agency directly responsive to Congress who is responsible for the medical research of the United States of America.  Um, ok... so how does this fit into our picture?  The NIH houses a division, rare and undiagnosed disease.  They accept about 50-100 patients a year, gathering information for the advancement of medicine in the US.  They have access to information and potential cures and treatments before they are released to the public medical system.  We felt pushed up against a wall where Jack was concerned, we were ready to try anything.

So, we knocked on that door, and they answered.  Their answer was yes.  Yes, they will accept Jack as a patient with the belief that they can help him and advance medicine to help other children in the future through him.   Again we find hope.  It took a year of back and forth sending records, even hair samples to reach this point. 

In the fall, we will travel to the NIH with guarded anticipation and hope.  We will not give up, we will not let our boy go without answers.  A flood of mixed emotions fills our family.  We are scared, yet hopeful.  Doors are opening and we are walking though, lead by hope and love for our boy.

“Ask and it will be given to you; seek and you will find; knock and the door will be opened to you"

 Matthew 7.7

The Love of Learning

We all want to give our kids their best shot in life via a good education.  Their education determines where we buy our homes, what jobs we take to pay for school, how we save our money for when they go to college and so many more decisions.  And in the end, we hope to foster their love for learning so they grow up, go to college, get a good job and become successful.

UCP Charter School, The Experts for Children with Special Needs.  This is where we chose to send Holly and Jack.  Special needs.  Today's mainstream thought on special needs is integration, putting the special needs child into a general education setting to encourage  their highest potential functioning. Putting a typical child into a special needs classroom?  Yes,  Holly chose to be just that kid and we supported her decision.  After all, doesn't Holly have special needs too?  Don't all children?  

UCP was a perfect fit for Jack.  Small classroom ratios allowing for extra attention for the medications that he needs to take during the day, extra one on one time to help him with some of his learning delays, the ability to get therapy for his fine motor skills during school hours and a staff who is trained to deal with his seizures.  Yes, perfect.  Jack had a great year with wonderful teachers who not just taught him, they loved him.  Finding ways to get him to eat, easing his fears of transition with a safety plan, calming a nervous Mom when seizures occurred.  Even a day when I received a call that he was found unresponsive during nap time and an ambulance was called, they handled amazingly and he was always in great caring hands. 

Holly has attended therapy every week for two years.  Morgan has attended occupational therapy every week since she was 2 weeks old.  Typical girls growing up in a not so typical household.  As normal as we strive to be, Holly endures a lot as well. Small classroom ratios, teachers who understand our family and can comfort her when her brother is sick or in the hospital and a one stop drop for Mom, perfect.  

What we didn't expect was the compassion that came from Holly attending school here.  Yes, she may be the only child in her class without an IEP, but she has special needs.  Not only did Holly pass Kindergarten with flying colors but she learned that everyone is different and that different is okay.  She has a friend in a wheelchair, one who eats with a feeding tube and one who doesn't speak.  Holly has learned to feed another child with a feeding tube, learned to understand someones feelings without using words, learned what brings joy to someone who can't smile on the outside.  She's learned to think outside of the box, making a valentine bracelet of bells for a boy who cannot read or enjoy a card or candy.  An unexpected gift from a school. Gifts that will transform who she becomes and that she will carry with her for the rest of her life.  We are so proud of our Holly Cakes and can't wait to see the great things she will do with these gifts.

Support

A definition of support in Miriam Webster is to endure bravely or quietly.  This is what we’ve been doing since our last blog post, supporting each other (or as Jack would say, theirchother) as a family. I now feel that we need to again share where we are at in our journey.  We’ve been going at the speed of light, enjoying and soaking in the good days/moments and wading through the tough times. 

We left Boston in January with hope in a bottle called Ethosuxamide and a metabolic team who would surely have the answers.  Jack is not a candidate for any type of brain surgery for his epilepsy due to his seizures being generalized, or occurring all over his brain without a focal point or side.  In addition, there is likely an underlying cause for his seizures and surgery would not cure him anyway.  The wonderful team in Boston rediagnosed his main seizure type as atypical myoclonic absence seizures.  Seizing approximately 6 times an hour without us even noticing, causing Jack to be antisocial, scared and withdrawn.  Also causing learning delays, physical and emotional damage... again I say we had no idea what the monster Epilepsy really was. 

A new medicine is where we find hope and were able to enjoy a glimpse of a boy we once knew.  For a month people, even ones we only know in passing, were commenting on how happy Jack was. How they haven’t seen him smile in forever, how amazing his smile is with those double dimples.  He didn’t cry going into school, he got his confidence back; he got his smile back and got his first EEG without ANY seizures!

Unfortunately this was short lived.  The story of Jack is that of a roller coaster ride.  Great days of laughter and swimming and days of throwing up and seizures.  So we put one foot in front of the other and continue to search for answers.  In April, Jack had a very traumatic spinal tap which showed abnormalities that we are still trying to piece together. Out of this has come one new diagnosis cerebral folate deficiency and yet another medication, topping us out at 12 medications, a lot of them given at least 4 times a day.

We will be traveling to Boston in August as a family for follow up appointments and some much needed family downtime.  Until then, we are counting down the days until school is out and we can swim and play and laugh and smile.  And what happens in between those moments we will get through until the next smile.

Jeremiah 29:11, For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.