New Adventures: Matthew's House

Over the past number of months, we have been facing the reality that we needed to find someone or some place for respite care for Karter, that would extend more than one or two nights. 

Up until now, we have managed to use family or close friends to care for him.  However amazing that is and will continue to be, it has not given us more than a two night stay away.  It has been more than 7 years since Kurt and I have been away together for longer than 48 hours, which for any marriage is far too long.  We have been very diligent about taking small windows of time together, but in the craziness of the life we live, its just not enough time to actually rest and be able to reconnect. 

As Paige gets older and more independent, we are now realizing that there is an aspect life that gets easier in some respects as your children grow up.  She can go stay with another family with very little change to their daily routine because she can independently care for herself.  With Karter, that is not the case.  Because he requires additional support, the ability to just leave him anywhere does not afford us that same freedom.

At the same time, we have been working through the idea that just as Paige loves to go and stay places without us, Karter being almost 8, may also like that opportunity for that same independence of us.  It is with that in mind that we came upon Matthew's House.

Matthew's House is only about 6 months old.  The physical space is absolutely beautiful; the layout has wide open spaces, huge windows, individual rooms for each child, a large adapted jacuzzi tub for bathing, state of the art adapted playground and so many more amazing features.  It feel warm and inviting like a home.

We applied and were accepted into the program about a month ago.  And this weekend was Karter's first stay.  As part of their intake process, the parents come along for part of the first stay and remain with the child in the house for a minimum 24 hour stay.  The idea is that the parents teach the staff about their child.  The mandate is that the child feels like the routine and normality of home still continues during their stay.

In the 24 hours that I stayed with Karter, I was able to teach the staff about him and a care plan was created and approved by me for the directives to be carried out while I was not there.  Coming from a child care background, I appreciate the protocals, systems and accountability they have in place to ensure each child is taken care of during their stay. 

I suspect Karter will come home spoiled, as he has someone to entertaining him 100% of his waking hours :-). 

 I had the pleasure of staying with him all of Friday day and night and then I left him Saturday afternoon and will pick him up Monday morning in time for school.  When I said good bye Saturday, he was full of smiles, anticipating a nice outside walk with two of the staff.  As I closed the elevator doors to head to the parking garage, I found myself spilling a few tears on the floor.  This was the first time ever leaving my precious with someone overnight that was not family.  Even through the tears, I had a confidence in my heart that he was getting the best care possible while not in my home.

As the day/evening progressed, I found myself looking at the clock and thinking "5:00, time for Karter's dinner" and realizing he was not here.  I thought I heard him a couple of times and had to remind myself, he was not here....  It's been a strange thing.  I told Kurt last night that its like a part me is missing.  I mean, obviously...but with Karter being so dependent, he has become such a big part of who I am and a huge part of my daily life, so without him here, it feels a different kind of empty.

This is all part of the process of letting go and allowing both kids to grow up.  I am shoulder deep in that reality today!  The emotions are a crazy mix or emptiness, sadness, excitement and happiness.  Its a roller coaster ride for sure. 

Here are a couple of pictures from our time with him.

 Enjoying the adapted merry-go-round

 Loving the swing!

 Daddy time!

The parent suite

My precious boy, just before I left him on his own

for the first time!

Hiccups

Karter remains on the Ketogenic Diet.  Looks like the last post was in July just shortly after our 1 month appointment, time really has escaped me.

Here is the quick run down...

August brought about some crazy contracts to the results we were seeing in July and Karter was having a lot of seizures.  Enough to make us feel like the diet was not the success we had hoped it would be.

Early in September the team made some very minor tweaks to the ratio of his diet, accounting for the small amount of carb ingredients in his medications; this launched us into a 93 days seizure free run!  The best we had ever had.  EVER!  We we so thankful.  We were even able to take him completely off one of his medications.

The diet gave us back the Karter we felt we lost a number of years ago when the seizures started becoming more persistent, post surgery.  He was more engaged then ever before and we were starting to see gains developmentally that we had not ever seen.  We are so thankful that these things continue today.

December saw a couple of seizures but still very much a success.

In January and February we saw an increase of seizures and by early March we were into a very regular pattern of daily or every other day seizures.  This was disheartening.  We did not change a thing but all of the sudden the formula that gave us three months of seizure freedom was no longer working and we were frustrated.

In the middle of this month, we increased one of the seizure medications.  Honestly, this felt so counterproductive.  We had worked so hard to get to a place where we could come off medication, just to increase the dosage.  That said, for the first time in years, Karter has put on weight; almost 8 pounds since last June.  It is speculated that his meds were imbalanced because of his growth and weight gain.

A week after the increase we saw no change and with seizures multiple times per week, we were feeling like maybe we needed to talk about the option of coming off the diet.  Although we had seen some amazing results, the diet had side effects and we have to be smart and weigh out the risk vs benefit for Karter's sake.  If we are not seeing seizure freedom, better than before we were on the diet, then what is the point?  Not only is it labor intensive in its preparation it is regimented and strict in its format and limiting in what we can offer Karter.

We talked with the team that they said there are a few more things we can try to tweak the diet.  We had agreed to take a couple of weeks, do some blood tests and make some adjustments.  At that time we were just heading into Spring Break and decided that we would hold off on changes until we were back in town and in routine again.   That week, we had 6 seizure free days; the most in a row in a we had in a long time.

And then, this week, Karter got the flu...

We ended up at Children's hospital emergency yesterday because Karter had an incident called Status Epilepticus, which basically means "state of persistent seizure".  Karter had two episodes of non-convulsive SE; one was more than 20 mins the other almost an hour.  He was completely unresponsive both times but was still in a semi-conscious state. 

The SE was brought on because of sickness and we have been given "rescue" meds in case an incident like that would ever happen again.  Karter is doing much better today and I speculate tomorrow he will be close to 100%.  I am so thankful for such and amazing team of people that work with and for Karter, none the less, it was a disconcerting incident that we hope and pray will not happen again.

When we were in hospital one of the doctors said to me "consider this a small hiccup".  That has stayed with me for two days.  I have been really thinking about that a lot.  We had 93 seizure free days, that was bliss and we still rejoice and celebrate those 93 days!  On the back of that, we have had a couple of months where we have not seen the results we desired.   "Consider this a small hiccup."  I am praying for another 93 days and then some!