June 2014

Chase is now almost 22 months and he has been a very busy boy.  He proudly claps and cheers at himself after almost everything he does, if that gives you an idea of how much he is used to everyone around rooting for him on a daily basis.  He is climbing on the furniture, standing on top of tables, and flushing things down the toilet like a mischievous little boy.

Chase started speech therapy 6 weeks ago and the positive changes have been coming very fast.  He had started having tremendous tantrums frequently- it seemed he knew exactly what he wanted but he had no idea how to communicate.  The tantrums have stopped for the most part and he is much happier- finally pointing at things, using multiple signs and a few words just in the past couple of weeks! He is eating better too, although very particular and issues with certain textures.  He is now at 4 therapy visits at daycare each week and we cannot speak enough praise about what this has done for him and our family.  

We are unsure but I suspect that Chase had some "normal" head drop seizures last month while he had a fever.  We immediately contacted his doctors at Mayo, who said they would work with our local hospital to get tests done so we did not have to make the long trip there. We were weary based on our past experience here with Sanford Neurology, but it was interesting (and shocking) to see them hustle over a weekend to get him in for an EEG the next Monday morning.  The local neurologist called me back an hour after the test that Monday with results, which were also sent to Mayo for verification.  I cannot help but wonder if this was because Mayo ordered the tests and how things would have gone if I tried to arrange this on my own.  Regardless, the panic was because the hypsarrythimia (abnormal brain pattern) could still come back, but it had not. It is very common for kids with IS to have other seizures especially when ill, so we were advised to watch him closely.  If Chase has "normal" seizures, we can live with that.  Unfortunately in our perspective, this is really nothing compared to what he had been dealing with.  

Chase finally learned to bite off foods such as corn on the cob

The most exciting news is that Chase had his skills reevaluated last week and most of his skills are now only 1-4 months behind for his age!  That is pretty amazing, realizing that all of his skills were measured at half of his age or less when the spasms stopped.  Language was further behind, however only 6 weeks ago he was measured almost 5 months behind where he is now so he is bridging that gap quickly.  He is truly a rock star.

This little guy has had his mom and dad on their knees begging God for mercy and although we could not be more grateful for the outcome, it has still been a hard and emotional trip. We have nightmares. I personally have a hard time being around babies a certain age (about 8 -15 months) because I can't help but mourn that normally exciting time of development we truly lost with him.  I’m scared to see my niece in a few weeks, who is coming up on that age when Chase's head drops started.  I’ve been in a public place and watched a baby appear to "drop" its head (which wobbly baby heads do all of the time) and screamed out loud, then started bawling.  Time will heal and we have so much to be happy about, but the fear and pain is still fresh.  June 29th is coming up, which is the date last year that Chase had his first recognizable seizure and the spasms started happening all day long but we didn't know what they were.

Our lives have changed from this but in a good way.  It has brought my marriage and our families closer.  We have started going to church every week and praying together.  Chase's older sister Anna is the most caring little girl who loves and protects her brother to no end, and consistently talks about Jesus and prays for the sick.  I have been contacted now several times to talk to families who have infants with seizures.  Chase will be fine, but if we can help even one other family get answers sooner when they don’t know what is wrong with their child, then this has been worth it.  

Chase enjoying the water

April 2014- Continued Success

Chase has changed our perspective on development so much as we get so excited and celebrate the smallest of his accomplishments.  It is because we know just how lucky he is and we will never forget that.

Another trip to the Mayo Clinic in Rochester early in March brought more relief and exciting news. Chase had a second completely normal EEG!  We now can wait 6 months until the next visit which would bring us to right around his 2nd birthday in September.  If that EEG is normal, we will discuss weaning him off of the topirimate.  Although this was amazing news, the neurologists' developmental assessment of Chase was not as positive as that of our local therapists. They repeatedly mentioned the future being very challenging as Chase will need a lot of attention and will have trouble in school.  We can understand they don’t have the most positive outlook from our own research on infantile spasms and their comments about what they usually see happen with these children. While this was disheartening to hear, it put me in enough of a panic to come back home and reevaluate if we are doing everything possible to help Chase.  We increased the frequency of his therapies and set different goals.  All we can do is have faith that Chase will be unlike most outcomes.   

Another normal EEG!

1st ER visit for being a normal crazy boy!

 The biggest shift recently is Chase no longer having so many special needs but becoming a normal toddler boy.  We were starting to work on placing a direct support person to help full-time in his daycare room because he required much more work than the other children his age, especially with feeding and going to sleep.  You can imagine our joy when the daycare told us they did not need it anymore because he was catching up so fast!  He started using a therapeutic weighted blanket to sleep which helps tremendously.  We are fortunate to be in an exceptional daycare with small class sizes that has gone above and beyond to accommodate his needs.  

A teddy bear holding the check presented to Jacob

A friend who works at a local bank asked me to participate in the bank's "Pay It Forward" program.  I received $1,000 to give to an individual, family or organization in the community.  I chose the almost 2-year old boy, Jacob, that we had been connected with in our area, who also had Infantile Spams.  On St. Patrick's Day I brought the check over to the family and it was one of the best days of my life.  This encouraged Tom and I to think about how else we could personally give back and help other children suffering from epilepsy.  We decided that each year we would give a percentage of the profits from our family lighting business to to an organization that helps children with epilepsy, and we are making plans for that starting this year. 

I found this old video of Chase from last October after Chase had taken ACTH for only one month and it is amazing what it does to the body.  Luckily he was back to normal within only a few months. 

February 15, 2014- A New Year, A New Boy

It has been over 10 weeks since the last update.  We have been busy and I guess as the saying goes, no news is GOOD news!  If someone would have told me even a month ago that Chase would be where he is at today, I would not have believed them.  He is unbelievable.  He is amazing.  He is our little miracle.

After our last trip to the Mayo Clinic at the end of November when we found out the great news that Chase's EEG was clear, he slowly begin actually interacting with us and others.  He had been in his own little clouded world for so long, it was amazing to see him start recognizing us when we picked him up at daycare- even if at first smiles were for only his sister.  The blank look he would get in his eyes slowly started to be replaced by awareness. He started to reach up to be held and cling onto us, rather than feeling like a (very heavy!) wet noodle.  It was a wonderful feeling.  These simple things I never thought about before and took for granted with our daughter, I had wondered when-  if at all - would ever happen with Chase.

Christmas Day 2013

On Christmas we brought Chase back to the Healing Shrine
Tom took him to each day at our church after he got out of
the hospital in September.

For basically 5 months during the time he had infantile spasms and was treated with ACTH, most of Chase's development had been frozen (except the walking - which cannot be explained).  The development slowly started up again in October after the spasms stopped, but around Christmas when Chase was almost 16 months old, the changes started coming fast.  The week of Christmas he finally clapped his hands for the first time, another milestone for which we had been patiently awaiting.  He started being more alert, laughing with and chasing other children at daycare. This was good, this was REALLY good. And then he said "Mum-mum".  Even though it has only been a few times and I don't even know if he is saying "mama", it is the best sound on earth!!  There were many days I truly feared I would never hear that sound come out of his mouth.  Christmas was an exceptionally emotional time for us, realizing what could have happened "80-90 percent of the time" and that we don't even know and never will know how lucky we are to have dodged that bullet.  We visited Chase's local pediatrician in January, the first time she had seen him since he had finished the injections. "He even has the Mayo Clinic excited!" is what she said ecstaticly, noting she had never seen so many exclamation points in a medical report as the most recent one sent to her from the Mayo Clinic.  She was astounded and said she had never seen this excellent outcome.  

Now it is the week of Valentine's Day, and Chase is practically running up to us happily hysterical when we pick him up at daycare.  He will actually sit for a few minutes and look at a book.  He is banging blocks together, and banging everything and anything.  He is a tornado, a typical boy getting into everything he isn't supposed to and more quickly than we can keep up with. He just started waving his hand bye-bye a week ago.  He no longer drinks a bottle on a daily basis (only in a pinch if we can't get his medicine in- which can be stressful) and with a lot of persistence and occupational therapy, he is now feeding himself some finger foods.  It's funny how we have changed from the crazy parents who wouldn't let our first child eat sugar or anything the least bit unhealthy at this age, to feeding Chase a steady diet of hot dogs and M&M's, among other crap.  When you have a kid that would not eat for so long, you are just excited they will eat anything!  When you have a kid who has been through this nightmare and that medical treatment, the worst cold, flu, or hand, foot & mouth disease doesn't make you flinch.  And Chase has had all of these things the past few months and he did not flinch- he has become one tough cookie.

The Early Intervention therapists and daycare teachers have commented that Chase is a completely different boy than he was only 2 months ago.  Although he is not really saying any words, Chase is making new sounds and that is a good sign.  We will most likely need intensive speech therapy down the road but if that is all, I think we can deal with that.

Along this journey, we keep hearing stories of other children that family, friends or acquaintances know or knew with Infantile Spams, and the story is never good.  It is devastating- it is a teenager in diapers, it is a grown adult with a feeding tube and unable to communicate, it is even death.  We now know Chase's story will be good.  As we watch him today dart around happily, we cannot explain and we don't know how we have been so lucky, but he is our little miracle.

In his favorite place- the Tupperware drawer

Feeding himself !