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.

Boston

Let me start by thanking everyone for their prayers and well wishes, it seems to be working! I am going to try to keep up with updates while we are here, as I know there are so many people along on this journey with us.

We had our first appointments yesterday at Boston Children's Hospital and I am so impressed with their team. The doctors really listened, were never rushed and had some ideas already about a course of action for Jack. Our first appointment was with Genetics who evaluated him and discussed in detail all of his abnormalities with his urine and blood work along with physical symptoms. Their concern is the same as our doctors at home... he has so many different systemic issues that can't be explained as to why they are occurring. Genetically he doesn't fit into any of the "more popular" syndromes and so far our genetic testing has not revealed any abnormalities. After much discussion he is being referred to their metabolic team. This team deals with the more rare disorders and since he has some metabolic abnormalities it seems like the perfect fit. This team will come in and evaluate him and complete their testing while he is being monitored for his epilepsy.

Our next appointment was with neurology. Her concern is the evolution of his seizure type and the fact that even with medications he is still seizing and having abnormal electrical discharges in his brain. She has reviewed all of his past EEG's and MRI's and feels that his epilepsy may have started as a focal type but has now evolved into a generalized type. This means that the seizure has no particular focal point of origin and that his whole brain is seizing not just one particular area. What does this mean? This means we will repeat testing and long term monitoring starting the 19th to get another view of his seizures and how and where they are occurring in his brain. If they are in fact generalized we will first try some medication changes and then discuss two other options. One is surgery and one is a VNS which is an implanted device that helps control seizures.

This is the short version of our 8 hours yesterday. I am hoping Jack gives us some good data next week and that both teams can find a solution! Again, thank you to everyone who is praying for us and sending us good vibes. Special thanks to the MOPS from FUMC for feeding Michael and the girls and to all of our wonderful friends that are helping out with Holly. More special thanks to all of our great friends who contributed to keeping Jack and I warm and entertained during our trip!

Finding Hope

2014, a year of hope for the Power family. The New Year always reminds me of my mother. In 2007, we said goodbye to a year where my Dad had undergone cancer treatments and my sister had spent a lot of time making bad decisions that effected our family. We were welcoming this New Year with open arms, hoping for health and love for our family and my “ new family”. I had just announced that my parents would be grandparents for their first time, making the prospect of 2008 being as my mother called it…” Our best year yet”. Little did we know that in just six short weeks we would say goodbye to my mother forever. Every new years eve, I still hear her say “Our best year yet”.

2014 brings hope of health for Jack and healing for our family. Jack and I will travel to Boston Children’s Hospital the second week of January. He has appointments scheduled with neurology and genetics during our time there. Two weeks ago his neurologist in Boston took his case to their monthly surgical conference where they deemed his case worthy of more testing to find help to control his epilepsy and to hopefully figure out what is causing his many other issues. He will be an inpatient for at least 7 days with appointments the week prior to his admission. Michael will remain at home with Morgan and Holly and try to maintain some sense of normalcy for the girls while continuing to work.

This will be the first of several trips to Boston this year for us, I’m sure. Jack is hoping to see snow and excited to take his first trip on an airplane. Holly is excited to spend time with her Daddy and Morgan will be excited to have her first birthday. Michael and I are hopeful that this WILL be “Our best year yet”, a year where miracles happen and healing takes place.

The Merry Go Round

Since Jack's hospital stay in August we have been riding a Merry Go Round, up and down and around and around. Every day brings new highs and lows as we push forward for answers on how to help him. I've been reluctant to post because this is so emotional and I don't want anyone to view him differently due to his current symptoms. There is such a fine line between sharing information to those who care and protecting your child from judgement. With that being said, we will give an overview of where we are at in his story right now.

Jack will be admitted into Boston Children's Hospital on January 14th, on Morgan's first birthday! We are still waiting on his final schedule to roll out but he will be there a week or two. The clinic up in Boston is a Brain Malformations clinic with a team of doctors who specialize in everything from neurology to genetics. At this point Jack has two separate brain malformations, periventricular leukomalacia and mesial sclerosis, so this is a good starting point for us. We have gotten all of his medical records to them so there shouldn't be too much repeating of testing. We hope that the team up there can figure out if he does indeed have an underlying metabolic issue. And if he does not, they can explore what their opinions are as far as brain surgery. The belief that he has a metabolic issue comes from his pancreatic insufficiency and that his blood work is not normal. His blood work has several highs and lows in addition to several slightly askew numbers for anything from fatal metabolic disorders to levels of iron. Our Dr's here at this point give us a friendly wave and say "let us know what they say in Boston". They all readily admit that he is sick, they just don't know how to help him.

So, in the meantime we wait and hold our breath and thank God for another day. Jack is still having seizures, which could take him from us any day. He is struggling against his own body and is increasingly tired and grumpy. It is amazing how strong kids are and how they just "go" because it is in their hearts and souls to have fun and love. We are pretty good at keeping it normal on the outside and letting him crash behind closed doors. Now, if you ever saw us in and out of school or church you may not think this was true. We are praying for a smooth holiday season and 4th birthday for Jack. And as always, we appreciate all of your love, prayers and support more than we could ever express in words or actions. Please keep Jack in your prayers as he has a long way to go, keep praying for answers to come and smiles and laughs to never end.

                             Playing in the dirt is fun!

No Words

There are no words to describe how you feel when your child is not doing well. Whether it be milestones, problems with friends, illness and the list goes on. We've all felt that fear and felt the what if's, and it feels awful. There were also no words from a little 3 year old boy to any doctor or nurse during 5 days in the hospital. 5 days of anesthesia, 5 days of video EEG, 3 nights of sleep deprivation, 3 days with no naps, 3 sets of visitors that love him so much, 2 worried parents, 2 siblings missing him at home and one big unanswered question. How can we help our sweet boy?