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!

Ketogenic Diet - 1 Month Check Up

On Thursday morning, we went to Children's Hospital for our 1 month blood work and check up.  Karter had to fast through the night and until his blood work was completed.  It was a simple draw and he did very well.  No tears at all!

We had him weighed and he has regained everything he lost in the first couple of days on the diet.  They were very pleased.

Up until the appointment, Karter had gone 9 straight days without a seizure and the four days prior to that, his seizures would start but not manifest into anything.  The keto team was very pleased; so much so that they found Karter's neurologist and brought her in to tell her the good news.

Should this pattern keep up, they have said that the reduction of meds come September is a very good possibly.  We were very happy to hear that.

We will go back at the three month mark (September) and the decision on whether to keep him on the diet long term will be made.  At the same time, they will make a decision about medication.

We are very pleased at how well Karter had done on the diet.  Although extremely prep intensive on my part, we really feel it is worth it and we are falling into a good routine for prep. 

Happy 7th Birthday

As I write this, the sun is streaming through the window as you lay quietly sleeping on the couch.  I am always moved at how your peaceful nature touches me deeply.  You exude a quiet strength, patience and a grace that teaches me daily how to do better.

I spent the last couple of days reminiscing all the terrain we have covered in your 7 years.  (WOW 7 years!!!)  There have been twists, turns, smooth roads and rocky paths.  We have navigated life never feeling alone, always perfectly aware that our Heavenly Daddy has led along the right path.  I am so thankful for that partnership!

This past year has been a great one!  In your face and I see such a "big boy".  That little boy look is gone and you have matured so much.  Your such a handsome little man!  Your legs stretch for days and I wonder when they will be longer than mine!  You even have some lose teeth...I can't wait to see that toothless smile!

I love that you reserve soft kisses for only your Mama ...its a touching gesture that melts my heart every time.  I cannot believe how well you make eye contact now too, I see such depth of knowledge in your eyes, a world of treasure just waiting to leap out!  I love that bashful look you give me as you look at me out of the corner of your eye, pretending to not notice me - you're a silly boy!

Your voice...wow, have you ever found it!  The gleeful squeals that I hear first thing in the morning to tell me you are awake and ready to start the day.  The screams of delight when you see or do something you like.  We can't forget that infection laughter that bubbles out of your belly when we play "ahhhhh boo!" and tickle you.

I love you son, more than I can ever express in a million words.  You continue to expand my capacity for love, faith and patience.  You are a treasure and a joy.  May this year be one full of new things.  You have endured much this past year, even this past month.  Seldom you complain and often you just "go with it"...I learn SO much from you!

May this year be full of amazing new miracles, dreams and new adventures.  You are one of my greatest treasures.  I love you so much.  Happy Birthday!

Ketogenic Diet - Week 2

Last week of school CRAZY!!!!!!  So glad summer is here and I can come up for air.  All week I knew I wanted to post and all week I just could not sit down long enough to write anything.

Karter had 5 seizure free days, YEAH!  He then had two days where he had night seizures.  He then went three days and had another one.  This is the best seizure control we have had in a long time, so we thought that was pretty good for week one.

Had had a could of issues with digestion and constipation, which obviously made for a couple of grumpy days.  But once we got that all worked out, he was back to his happy self.  Karter seems to be regaining is energy and is sleeping less during the day and very well at night

The food is still enjoyable for him, there is not anything that he has rejected.  I spent one night preparing the weeks meals, it took me a couple of hours but did not seem as hard as the first time.

Overall, I would say this first couple of weeks have gone real well....

Ketogenic Diet - First Day On Our Own.

Karter was up quite early this morning.  He woke happily and played until I went into his room just before 7.  I could tell right at the beginning of the day, that he was alert and happy.  He did not have a seizure last night.

Karter ate breakfast and really like it!   It was a new concoction that is a cross between warm cereal and pudding, made from a powdered substance called "keto-cal".  Think of it as vanilla protein powder; its main purpose is to be used as a drink, however there are many other things they make from it.  It's all trial and error, I figured if he liked it,  it's just more variety that we have for his menu.  Funny thing is because of these new preparation methods and recipes, the last few nights I have been dreaming weights and measures (grin)!

I had decided to see how Karter was into the morning before I sent him to school.  It was clear to me by 10:00 that he was ready to go back.  He had a solid 30 minute nap and woke full of smiles and energy.  I took him to school around 10:30 and he stayed the rest of the day.  When I arrived to pick him up he was laughing and happily vocalizing loudly.  The report was that he'd had a great day! 

He was so engaged and alert and happy for the rest of the afternoon and evening; my heart was so full to see him returned to his typical happy self.  Again, he ate all his snacks and meals and he drank a lot of water (which is our biggest challenge, but of highest importance).

After dinner, I spent about two and a half hours, preparing meals for the next number of days.  I was surprised at how many variation I could make with just a few basic recipes.  It did take me a fair bit of time, but I think a lot of that time was just trying to get myself started.  That initial "jump in with two feet" was tough, but once I was started, things went fairly fast.

I am experimenting with a lot of different methods right now to see what will work the best for me.  Today's creative trial was taking an ice-cube tray, spraying it with coconut oil cooking spray and then portioning out 15g of sweetened cream for Karter's snacks.  My hope is that I can pop each individual portion out into a container with fruit, jello, cocoa or other "approved" ingredients for his snacks.  For immediate use, it would be like ice-cream.  We'll will see how it holds up if it thaws in a container for lunches etc.  I am hoping this will save me time each day as there are three snacks to prepare.

I think our first day on our own went pretty well...

#1 lesson learned...when you are out for the day, bring more meals than you think you might need.   I had brought Karter's morning snack and lunch (since I didn't really think he would go to school all day) and I had to run home to get his afternoon snack because he was able to stay the whole day.  There is definitely not as much freedom to "just grab something" when you are out.  So I just need to be sure that I over-plan for the day, to be sure that if something comes up and we don't make it home in time, we are prepared.

Ketogenic Diet - Day 4

Karter slept well and woke at normal time, just before 7 with no seizures.  He appeared more alert this morning than yesterday.  He ate breakfast before we left for the day and then slept all the way into the hospital.

We had an appointment with the neurologist at 9am.  They weighed him and he had lost a bit of weight since the beginning of the week, but they tell me that is normal in the "switch".

The neurologist explained to us that they look at the next 3 months as trial.  She assured us that it can take almost a month for him to gain back all his energy.  The will use this next month or so to "tweak" the balance and make any necessary changes.  At the three months mark, depending on seizure control, they may adjust his anti-seizure medications, but not before that.

We were given the final prescriptions and supplement information and then we finished off the morning with one more time in the kitchen preparing food for the following 24 hours.  When we were done, we were sent on our with with the final paperwork and supplies that we needed.

Kurt and I debriefed a bit about the week, when we went to lunch.  We both agreed that although we received a lot of information, we were not feeling overwhelmed, frustrated or worried about the days that lie ahead.  Instead, we were relieved and felt we had been given all the skills we needed to face this each day. Interestingly enough, the lack of information before we started and all the unknowns were so much harder on us than making the changes to our life to accommodate this treatment. For anything that may come up that we might not understand or know how to handle, a support team has been put in place to assist us, so we are not on our own.  We are so thankful to have a great team of people on our side!

Although Karter slept for most of the morning by lunch, he seemed to have regained his alertness and was getting back to his normal self.  By evening, he was laughing and full of energy, we even managed to keep him up late.  He ate all his meals and seems to really enjoy them.   My biggest concerned was about what he would eat and that he would like the food given to him.  He has really surprised me and made this transition easy.

We are pretty happy that the "induction week" is over and we are confident as we move into the next few days and weeks that we can make the necessary adjustments to life to accomplish a successful transition for Karter.