Week #6 Completed

Rebecca has now completed six weeks of treatment, only two more weeks to go.  Marietta and Matthew have three more weeks to go. During Week #5 of Rebecca's treatment Marietta and Matthew were still in full treatment.  That meant that we arrived at the clinic at 9am and left around 1:00-1:30 pm. Thankfully our home at that time was only 20 minutes away, so we would get home and have a late lunch.  By time that was done Rebecca and I had about an hour and then we had to head back to the clinic for her afternoon HBOT session. So for Marietta and Matthew it meant they had a bit more free time as they had an afternoon at home, but for Rebecca and I they were still busy days, especially as now I had to think about what to feed them for lunch, whereas previously lunch had been provided by the clinic. On the other hand, now Marietta was home in the afternoon so she could finish making the supper I prepped and we could eat as soon as we got back from the clinic.

Being done the intense program does not necessarily mean a more relaxing time for Rebecca, it just means she switches to doing more home therapy.  Since we were still tied to the clinic quite a bit last week she did find it tiring to try get everything done.  The advantage of hanging around the clinic while waiting for Marietta and Matthew was that they would allow her to use some of the therapy rooms that were not in use so she was still getting some treatment instead of just sitting around aimlessly ... altho I'm quite sure she would have enjoyed extra reading time.  So last week she was still able to get some PEMF at the clinic and a few other random therapies to try help with her back pain and a few times she could still use the sauna so she didn't have to do a detox bath at home.

 Home therapy for Rebecca takes a little over two hours and involves:

• daily coffee enemas - takes about 25 minutes
• daily castor oil pack therapy - takes about 30-60 minutes
• daily walks - 30 minutes
• 3-4 detox baths per week or more if feeling unwell (which she has been) - takes about 45 minutes
• mustard foot soaks as needed - which has been daily and can be done while doing castor oil therapy
• EFT (Emotional Freedom Technique - psychological acupressure technique) - 10 minutes
• Brain Entrainment - she is suppose to try to do this daily, but so far has not fit it into her schedule

Week #6 at the clinic has meant that Marietta and Matthew are done the intensive part of their program.  This means that all they need to do is HBOT daily and three times a week Marietta has biofeedback after HBOT.  We arrive at the clinic at 9am and they all go for their HBOT therapy and then Marietta goes for Biofeedback on Monday, Wednesday and Friday.  This past week Matthew also had a day of biofeedback because he missed a day the week before.  While one of them is doing biofeedback the other one and Rebecca can use an empty therapy room to do PEMF, Brain Entraining or Muscle Therapy.  With this new schedule we should be able to leave the clinic around 11:30 each day, some days earlier if there is no biofeedback, some days later if they decide to do something extra that day.  Rebecca then returns to the clinic at 3:30 to go for her afternoon HBOT and we are back home shortly after 5pm.  This is how our schedule should be until we are done treatment.

The big questions is how are the kids doing?  Are we seeing any improvement?

Marietta

Marietta has been doing quite well lately and we are seeing signs of improvement.  We are cautiously optimistic.  We have had ups before that suddenly went back down so we like to see long term changes before we get excited (long term with her means over a month) We also know that last summer she was making improvement and then as soon as school started and her brain was challenged things did not go so well anymore.  But overall we are seeing that Marietta is able to get up at 7am each day and go until late evening ... she is a night owl and is adjusting to the fact that she needs to go to bed earlier and not count on long evenings anymore, which previously was her best functioning time.  She has been doing more throughout the days, not just her therapies but helping out at home with meals and chores, being able to do various activities throughout the day and keeping up with her home therapies and walks.  This is not to say it's all good, she has had some rough times as well, especially when bad storms come through the area.  Thankfully these difficult times are usually short lived and don't last for days like before.  While she is able to function better throughout the day she still knows her limits and it still isn't very often that she feels she her eyes and brain are working together well enough to get behind the wheel and drive, but when they are she likes to take the chance to get out, even if it's doing my grocery run ;) 

Home therapy for Marietta involves:

• Brain entrainment 2-3 x a day - approximately 20-30 minutes each time
• Detox baths 3-4 x a week - approximately 45 minutes
• Castor Oil Pack Therapy daily - 30-60 minutes
• Daily walks - approximately 30 minutes
• Eye exercises - 10 minutes
• EFT - 10-15 minutes

That's roughly 3-4 hours each day of home treatment but thankfully can be broken up and spread throughout the day. 

Rebecca

Rebecca had a short period of time where she was doing quite well, she was chipper and singing and more energetic. Unfortunately the last week and a half has been rather rough again.  She wakes up wanting to go back to bed because she lacks the energy to keep going.  Her back has especially been bothering her and her hips at times, making it difficult to sit for very long and painful to walk and do stairs and overall just uncomfortable. She has had some pretty bad headaches this past week, as well as light sensitivity that makes them even worse. She also has been struggling on the neurological side, feeling down and grumpy.  But she keeps trying - she goes for her walks, she sits and plays at the piano when she can (so thankful every house has had one of those), she does all her therapies with due diligence, attends church and enjoys the little bit of socializing that she can get in on Sundays and as much as possible tries to contribute to her portion of the chores at home. This "flare-up", as they call it, is expected due to the Lyme's life cycle, so while we would love to see some improvement we are not surprised that we haven't seen very much and that we only had a short "good time" so far.  We pray that in the next couple weeks she will begin to gain more energy and have less pain.

Matthew

Overall Matthew is pretty "normal" again.  He gets headaches and sometimes dizziness, but these episodes are no longer stopping him from functioning like a normal kid and it's not very often that he says "I'm not feeling well" anymore.  He has regained all his energy over the summer with his love for biking, baseball and various other sports and it's great that he's found some friends to play them with at times.  And Marietta loves baseball so if time allows and she feels up to it she will go out to play with him.  As much as he loves the country, he is enjoying city living and the many lovely trails throughout the city, with nearby baseball fields or baseball games to watch.  All the pavement with places to play basketball  or road hockey ... he won't admit it, but the city isn't all bad after all.  Our concern is what will happen when he returns to school and has to sit indoors for longer periods of time.  When he does have flare ups we are usually seeing it in relation to indoor settings with multiple people (e.g. church, mall) and we haven't figured out the reason - claustrophobia? (he is fine in outdoor crowds), anxiety? (this is a hard one to figure out but we don't see other signs of him being any more anxious than normal kids), smells/scents? (this is what we suspect it is, that his nose has become more sensitive to smells in general now - something that is more common after you have become sensitive to one item you become sensitive to more).  Overall  feeling well makes it harder for him to want to do his therapies, but with time he has learned that they just have to be done so he can keep feeling good and he has stopped fighting and arguing when it comes time to do them.

Home Therapy for Matthew involves:

• Brain Entrainment once a day - approximately 30 minutes
• Castor Oil Pack Therapy daily - 30 - 60 minutes
• Detox Bath 3-4 x week - approximately 45 minutes
• EFT - 10-15 minutes (we haven't started this with him yet)

For the next few weeks we would like some of our focus to NOT focusing only on therapy and treatment each day but trying to get out and live a bit of normalness.  Unfortunately being tied to the clinic twice a day does make this more challenging since anything we decide to do cannot be too far away as we have to be back within 3-4 hours.  The other challenges in this are moving from house to house, which can be time consuming.  We just moved on Wednesday (packed up)/Thursday (returned to clean house) and this coming week we move again on Thursday.  We are grateful for the lodging we have received and the benefits of lots of space, so it is worth this extra effort, but it does eat up days where we would love to do other things.  This Thursday will be our last move before we do our official move from St. Albert to Taber at the end of the month.  And then there is the factor that there are so many other things going on with our plan to move in a few weeks, that doing "normal people" things just seems so hard to fit in, yet so necessary to keep going.  We've given up on using Saturday's to get out and do stuff ... the only Saturdays that it's actually been nice are the ones we were already booked - one we drove to Coaldale (we had nice weather, but while we were gone it poured rain and hailed in Edmonton) the other we were moving from one house to another.  Every other Saturday when we are actually not tied to the clinic it has been yukky, rainy weather at least part of the day.  We shall see how much we accomplish of "normalness", for now we are just glad that we are in the home stretch.

Matthew's last Hyperthermia treatment. He actually ended up preferring this heat therapy over the sauna because we ended up bringing in a portable DVD player so he could watch something as a distraction and then he found it much easier to endure then reading in the sauna for 40 minutes.

A good way to steal mom's bed for the night is to fall asleep during brain training ... guess the bedtime brain training is effective (or maybe it was all the biking and ball playing he did that day).  New rule after that ... you can't lay on my side of the bed for training!!  We couldn't trust him to do training in his own bed because there were too many toys that he somehow would manage to get at even though he was suppose to be just quietly laying there.  My bed was a bit closer for supervision :)  

This picture doesn't really give a good idea of what's so special about it.  The squirrels here are much smaller than our Ontario squirrels, more like large chipmunks with tails.  From what google tells me we have Eastern Grey Squirrels (altho they come in grey, brown and black) in Ontario and in this area they have American Red Squirrels (likewise come in various other colours), which is much smaller and does not have as much of a fluffy tail.

For one of our "normal people" activities we went to the Borden Natural Swimming Pool that just opened a few weeks ago.  This pool is Canada's first public, man-made, natural swimming pool, which means no chemicals are used to keep it clean and it is all done naturally by plants.  Click here to read/listen to more about the pool

Don't worry, you don't swim in this part ... this is the filtering system

As the link above mentions, it's "slightly icy".  Bear in mind that nights go down to 8-15C here and it doesn't get hot and humid like our area.  Outdoor pools are heated, but this one is only heated to 23C (73F) in order for the plants/organisms to do their work.  Matthew is nicknamed "furnace" because he's always so warm and I'm always so cold, so I like to snuggle with him to warm me up. While he may feel warm, he complains easily that pools are too cold.  So he put one foot in and refused to go any further ... until eventually Rebecca coaxed him in.  To be fair, you have to take a good shower before you go in and it's warm water, and then you step into cold water.  And to be even more fair, while they had a heat warning that day, it was rather cool in our opinion at only 24C with a cool wind and no humidity. 

The pool is completely surrounded by sand, not quite Ontario beach sand, but pretty close.

Every third Sunday during the summer the local church has Picnic in the Park and whoever wants can bring their supper to the park and socialize there.  There are not many teenagers in this congregation as it is a young congregations.  Here a group of teens and kids are playing Apples to Apples.

I'm not sure why I bother making breakfast when they have to take enough pills to be considered a breakfast in itself and then drink a smoothie with more vitamins and nutrition ... but we tried smaller breakfasts and were always hungry, so we returned to breakfasts of more sustenance to keep up with our quick dutch metabolism.

Rebecca has been trying to convince us that it would be good therapy for her to have her own cat ... so we got her one ... lol, NOT!  She gets to enjoy this cat for a week while we house sit. I was going to say that until they produce a breed of nice looking hypoallergenic cats she was out of luck, but I just googled it and there are actually a few nice looking ones ... shhh, don't tell Becca!!

It's so nice that Marietta has been doing so well lately. If she has time and energy she will go out and play some baseball with Matthew or on this day road hockey. As a side note it was 34C that day, Marietta's still and pants and Matthew in all that equipment... but they said it finally felt warm (and sweaty for Matthew) like back home. 

This picture is for Matthew's Ontario buddies ... how quickly he's become a trader to his Maple Leaf's  😲.   Once again, house sitting .. so he gets to be loyal to his second favourite team for a week 😀😉