Family Day Weekend

Chloe, Ryleigh, and I were able to spend the family day weekend together – I missed Dan and Jakob — but it was nice to be the girls. We spent time together trying to renegotiate things as we are in a small space and we are all a bit tuckered out by the events the last 5 weeks.

The best part of the weekend for me was a visit from Carl and Becki – they came as ambassadors from my other family — the EDS community. What a delight to receive special care packages and messages from home. Becki relayed many stories of staff, students, and parents showing their kindness and caring towards our family. What an amazing spirit our school has for each other. I am so grateful for all effort shown to help us. I cannot wait to get back to Vanderhoof to share my gratitude and hopefully pay it forward.

Ryleigh’s appetite is starting to level out now that she is reducing her prednisone (steroid) medication. Her cravings for high carb salty and/or sweet things has mellowed but as a result she has gained 3 kilograms in a week! Much needed, I may add. However, she is a bit shy about the puffiness that the steroids add to her cheeks and tummy. I think it is rather cute — something a 12 year old does not want to be called.

Ryleigh’s infection is clearing up – thank goodness for the antibiotics. She has made the effort to go swimming a few times and has enjoyed it. The water is easier on her leg and this type of exercise is good for her. She manages about an hour and then it is time to go home and rest. We found another community center in Vancouver in the Killarney area. The girls really liked this pool it was smaller than the other pool, had a deeper pool to play in, and had a water slide. It was nice to have a change of scenery and get out and about for a bit.

Today was a bit of a stressful day for me. We got out to the mall – Oakridge Mall – which is what you would call a high end mall. Many name brand stores – I have been fortunate as both Chloe and Ryleigh have not been caught up in needing name brand clothing. But, the lure of Lulu Lemon called Chloe. We ventured in to the store and I tried to find a sale rack, no luck. Chloe will need to buy her own clothes with her own money — I realize it may be better quality but $125 for a hoodie just is not in our budget! However, I did find a really nice purse at a store (can’t remember the name) until I saw the price tag for $348! Oh my, I will stick with my Costco purse!

Ryleigh was not well today. She was weak and pale most of the day. We had to encourage her to get out and come to the mall today with us. She has started having stomach pain again and some other symptoms (she doesn’t like it when I go into too much detail on the blog) but I am sure everyone understands what I am referring too. There has been no visible blood but very dark stool — we go back to hospital on Wednesday and I will tell them about it. We are planning on returning to Vanderhoof on February 16th for a couple of weeks but if her symptoms continue we may be hanging out here awhile longer. Maybe the remicade treatment will fix things up — fingers crossed. We are all so ready to be in our own house. I am getting creative at trying to be more creative with cooking on a double burner hotplate but it would be nice to be in my own kitchen. I am a kitchen gadget collector but remarkably I am managing cooking with one knife, 5 spoons, 3 forks, 1 spatula, 2 pots, and a can opener. I am quite proud of myself and realize how lucky we really have it at home.

It is hard to have the ups and downs that go with Ryleigh’s illness. I start to get a bit relaxed and the a symptom comes back — I wonder if this is just a small thing or is going to lead to something bigger again. It is hard to stay positive and hopeful when I start to see some of the symptoms we have seen before – grumpy and irritable, tired, pain, pale, and tummy problems. I hope it is just a bad day and that tomorrow will be better.

We will venture out again tomorrow – possibly swimming or maybe the Bloedel Conservatory. I am trying to convince Ryleigh for us to go to the Aquarium or Science World but I have to respect her understanding of what her body is feeling and she does not think that she can do such a big excursion.


4 responses to “Family Day Weekend”

  1. Here is hoping the remicade finally kicks into high gear! So glad Becki and Carl were able to visit and catch you up on all that is happening! ❤ to you all!

  2. Hey Jo. This is quick, easy and different for breakfast. Mash up a banana and mix it up with an egg for a flour less pancake. You never know Ry might like it.

  3. Hi, Jo. Thanks for the update! It can be very tricky to find ways to relax. It’s not great to spend a lot of time in hyper-vigilant mode, as you know. It can also be very hard to ‘let go’ of the focused attention, when it is your job to be the case manager. No way around it. It sounds like you are finding ways to capture the necessary moments for the girls. How about you? Keep us posted and let us know if you get home. We can come and see you! YAY!!

  4. Hopefully this is just a wee set back and you’ll be able to get back home as planned. Would love to connect for some hugs!!! Take care!!

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