Tuesday, April 27, 2010

for these feet

Because these feet cannot run right now....




I will run for them.



The running season begins! This will be my third year of racing 5Ks with Rachel. I would like to present a challenge with our racing this year.

I am going to post only the kms that I cover with Rachel, and I challenge you to consider giving $1 per km for the Niagara Peninsula Children's Centre (the words are a link to the donation page). The first race we have planned is the Rankin Run which raises money for cancer treatment and support here in Niagara. So it will be a double run for us - for cancer treatment support and for the NPCC. Come run with us!

This Thursday, the local radio stations affiliated with Astral Media are hosting a radiothon for the NPCC. The support the NPCC receives from the community and abroad is instrumental in helping children receive the intervention and therapy they need. Both Rachel and Janneke are part of the NPCC family, and we are so thankful for that support!

The provincial government does give some money for children's treatment centres, but the dollar amount does not come close to covering all the costs involved. Consequently, you have too many kids on the wait list and their families feeling isolated and overwhelmed with their child's care.

In the years past, I have had a chance to speak on the radio during the radiothon. I will be on again this year at 5:25 PM on 610 AM cktb (this is also a link to the webpage). Our whole family will be at the Pen Centre from where the stations are broadcasting. You are welcome to join us at the Pen or listen in from your computer. And, hey, it'd be really cool if you could financially support the NPCC - even a little does so much!

And thanks for the feedback about the bibs. I look forward to your handiwork.

spot

Wednesday, April 21, 2010

do you sew?

Rachel in her stander and Janneke in the Jolly Jumper.... Rachel tried the Jolly Jumper when she was younger, but she did not show any interest in exploring with her feet. We are excited to see Janneke put her feet down and keep her head up - all in the last week!

Hi. Things have been pretty quiet here at the Pot house. So far, our appointments as an outpatient at Mac and a physio session at the children's centre have been helpful. It's nice to go see a specialist and have no major worries. We are getting pretty comfortable at Mac; sometimes we are hugged and greeted like family. I guess that's a good thing!

What's not good is my ability to sew. I attempted to replace two buttons today - and that took me too long. When I was taught how to sew with the machine, I treated the sewing pedal like the gas pedal on my little 82 Honda -way too fast for a good seam. So, I am asking for help.

Rachel and Janneke drool. A lot. I am washing bibs at least once a day, if not twice, seven days a week. Some of the bibs are wearing thin, and I would love to have one day off from the laundry. (Mind you, I am very thankful for washing machines; I can't imagine doing 25 bibs by hand!)

So, here's a photo of some of our bibs. They are made from towels (soft and absorbent). I am not crazy about patterns (white is good), but I am thankful that my mother-in-law can make a bib out of anything, including tea towels from Brazil. Thanks, Oma.

Would you consider making some bibs for my girls? They are approximately 26 cm across, about 20 cm long (from the neck opening), and the neck opening is approximately 13 cm across. They fasten with a loop and button (or button hole).

Or maybe you can recommend some affordable, absorbent bib websites/stores?

Yes, at times, the idea of my kids being drooling children in wheelchairs makes me sad. When I change their bibs many times in the day, when people stare at them at the park or in clinic, I ache. Yet, I know that this is simply who they are and who we are - human. Imperfect. But, my girls are beautiful. They take after their Father.

Thanks for at least thinking about sewing. I'd love your help.

spot



Thursday, April 15, 2010

after thoughts

Janneke has been so content to be home.


Rachel's found this new way to use her lips - like a motor.
She's pretty proud of her new sound.


It’s good to be home. There’s always a lot to catch up on around the house, and the pile of school papers from Em and Soph is too big, but it is good to be home.


Rachel did not sleep well while Janneke was in the hospital; she has been so happy to have Janneke back. I love it that we can see this change in her emotions!



Looking around the peds ward at Mac last week, I realized there are many chronic case families. Families like ours where the children come into the hospital with pre-existing conditions. Families that visit the hospital regularly for maintenance of medications, more tests to improve daily care, and a chance to add more specialists to the circle of care for their child. Families that adjust their “normal” regularly.


When Janneke had her first grand mal seizure on Easter Sunday, it was frightening for us. We knew the possibility existed for both our girls, but when it actually happened, we were in shock.


Time has passed; yesterday, Janneke had a very short seizure, and I realized, again, that we have to adjust our normal. For some of you reading the blog, you are all too familiar with seizures.



Each week, I wrestle with accepting our normal. Many of you do in your own lives as well. Can I assume - When we were kids, we hoped our life would follow a pattern we desired.


But, real life doesn’t follow a pattern. At least, that’s what I am learning. When I was twelve, I thought the tough times and unexplained changes happened to other people - I only had to deal with hairspray changing from an aerosol can to a pump.


Real life doesn’t follow a pattern. That’s it. That’s what I wrestle with. I am an a-type personality who would organize the toilet paper rolls in the bathroom if I had time. I want to have things measured and controlled.



It’s like the song from Robin Mark:

Jesus, all for Jesus,

All I am and have and ever hope to be.

All of my ambitions, hopes and plans
I surrender these into Your hands.

For it's only in Your will that I am free,
For it's only in Your will that I am free,

Jesus, all for Jesus,
All I am and have and ever hope to be.

It is difficult to sing that song and truly mean each word. That's the journey.

So......onward with daily living. Choosing joy for each day doesn’t mean I’ll be fake in my optimism, but it does mean I will try to count the blessings before I count the yuck.


There are a number of tests that we decided to do as an out patient for both Rachel and Janneke. Those appointments will come in the next number of weeks. In the meantime, we will enjoy the sunshine and warmer weather. I’ve gotta put away the mittens and winter coats. Crazy.


Thanks again for your support. We appreciate your prayers, and we enjoy the visits.


Peace.


spot


Tuesday, April 13, 2010

our little sprout



A sigh of relief. Janneke came home this afternoon. After meeting yet another specialist this afternoon (part of the neurology team), we were given the go-ahead. It seemed that even Janneke knew she was leaving, for she wiggled and smiled as we packed up.

The staff we met today called Janneke "a little sprout" - I like that. What does the future hold for our little sprout, let alone our family?!

For now, we are thankful to be home with all of us again. Thankful for our own space, our own IV poles, and our own food. Yay. Yet, I will miss the morning coffee with my sister Rhoda. Handy to have family working in the same buildings as the hospital.

Thanks for your prayers and warm thoughts. We post more after we unpack and find our normal again.

spot




Sunday, April 11, 2010

Janneke underwent another minor surgery this evening as her port-a-cath that was inserted yesterday was not working properly. It is now working and Janneke seems to be recovering well from this unexpected surgery. Her bowel issues seem to be resolving themselves as well. Janneke is tough. We hope to start giving her regular feeds within the next 24 hours. Once she is on regular feeds we are taking her home. She will likely have her hormone testing in the next day or two as well.

We're tired.

rp

Saturday, April 10, 2010

Saturday -update

This morning, Janneke had her portacath insertion. The surgery went well, and Ralph was able to be with her in Recovery. There was some trouble with accessing the port this afternoon, so they will wait until tomorrow to begin bloodwork on her.

Her body seems to be fighting something; the stomach still shows signs of infection, but her vital signs indicate that she is stable. She had a few smiles today too!

Tomorrow, we will know if her portacath insertion was successful, and we hope the infection clears up.

From that point, she will then start a routine of bloodwork, and we will attempt to start feeding her. Right now, she is still getting her fluids via IV.

Sometimes, being in the hospital for longer than you expected can make you forget about the rest of the world. You find yourself easily consumed with your worries and troubles. It seems that our life got complicated in the last few weeks, and looking ahead has become overwhelming again.

It is good for Ralph and I to take turns staying with Janneke, and we appreciate the little pick-me-ups like the homemade meals brought to the ward and to our house, the flowers, and the extra set of hands with childcare.

Thanks.

spot


Friday, April 9, 2010

Friday - update

Sara here. It's Ralph's shift at Mac. Today, Janneke was quiet - very quiet. So much that they ordered new x-rays and an ultrasound to see if there was anything internal that might explain her pain and now her lethargy.

Nothing alarming was revealed with the tests, and we hope that she is simply mending from a long week. There are some bowel issues, but that is being dealt with.

We are waiting for her pain to subside, for the infection to clear (bowel issues), and for the portacath insertion (surgery). Hopefully, this all happens sooner than later.

I wanted to include a few photos from awhile ago to cheer our little family up. Thanks for your thoughts and prayers.

spot

Janneke with her new blanket -on her birthday.


Janneke and Opa Pot - sweet moments.

Janneke always loves to cross her feet - chillaxin'.


Janneke and her mom, aka SPot.


Typical moment at 7 A.M. at the Pot house.
Everyone in Rachel's bed, hanging out while the babes feed.



Thursday, April 8, 2010

change of plans

Janneke didn't have a great day today. She had considerable discomfort and seems to be having some bowel issues. This may or may not be related to the seizures she had earlier this week.

Today she "fasted" to prepare for her growth hormone testing that was supposed to take place. The doctors were closely monitoring her during this time as well to see if she became hypoglycemic, and if it would onset another seizure. It didn't. But this bowel issue and the discomfort it was causing her became the main issue of the day.

It was also decided today, because Janneke has very poor vein access, which proved more than a little problematic when she was having her seizures on Sunday, that it would be a good idea for her to have a port-a-cath, much like the one Rachel had inserted a few weeks back. If her bowel issues clear up, she will have minor surgery tomorrow afternoon/evening to insert the port-a-cath. This will also make the growth hormone testing and all subsequent blood work much easier. But it is a surgery. We are not excited about this prospect but we are confident that it is the right thing to do in the long run.

Yesterday I stated that Janneke would probably come home on Friday. Today it seems the best case scenario would be for her to come home on Sunday.

rpot

Wednesday, April 7, 2010

more tests ahead

Sara is spending the night at McMaster tonight. If all goes well, Janneke should be coming home on Friday. Tomorrow, Janneke will undergo a number of tests with our friends from the Endocrinology department at McMaster. I use the term "friends" because three weeks ago Rachel went through many of the same tests with endocrinology. It was found during that round of tests that Rachel was/is growth-hormone deficient.

This relates to Janneke because often growth hormone deficiencies can lead to hypoglycemia (low blood sugar) which could lead to seizures. Rachel has never had a seizure, but apparently, Janneke did have low blood sugar while she was having her seizures on Sunday. I spent the last two days at McMaster talking with the attending pediatrician, a neurologist, a metabolic geneticist and because McMaster is a teaching hospital, all of the above's underlings. It makes for a lot of explaining regarding Janneke. We have a binder that includes every report and documentation created regarding Rachel and Janneke with us whenever we take either of them to see a new specialist. This binder has proved invaluable on many occasions over the last couple of days. In fact, it was a brainstorming session that I was having with the metabolic geneticist that led us to take a look at Rachel's recent growth hormone tests. We are not sure that this confirmed aspect of Rachel's condition has any connection to
the seizures that Janneke had on Sunday, but it is a start. Even if there is a connection we are not sure how that knowledge will be helpful in the future, other than freaking us out a bit more.

We have been reminded on many occasions that regardless of how many letters someone has behind their name to show the world their medical qualifications, we remain the biggest experts on Rachel and Janneke. This can be overwhelming because we have so many questions regarding their care, their development, their diagnosis, their future, etc. It seems that the past few days have raised more questions rather than given us any answers. For two parents who like to keep things under control, this is difficult.

Last night, as Sara was readying our oldest two for a return to school, Emily realized that she needed to practice her recorder. Usually this causes Sara and I to curse the music program at the school where our daughters attend and where I work. But last night, even though the same hymn was practiced over and over and over again...for forty minutes straight...Sara couldn't help but be a little thankful even though her husband and youngest daughter were in a hospital room 45 minutes away. The song? God Himself is With Us.

Thanks Len.

We'll update more in the days ahead.

rp


Tuesday, April 6, 2010

Tuesday update

Thanks again for your warm thoughts and prayers. We appreciate them.

Janneke was stable again today, and we met with neurology and endocrinology. This afternoon, Janneke had an EEG that showed normal brain activity. Receiving a "normal" result brings relief but also more questions. We still don't understand the cause of the seizures, and we can't be certain they won't happen again.

She is undergoing a few more tests, including more bloodwork, to see if there are any other clues.

As with much of the investigation with both Rachel and Janneke, we might not have any answers. Time for me to go back and read the patience and perspective post, I guess.

We are taking turns staying with her. Even though there are capable nurses on the ward, they can't remain bedside, and we are the most familiar with her care, particularly the tube-feedings. It becomes a team approach with us and the nursing staff - who are great!

We appreciate the emails, and our thumbs are sore from texting with the more media-savy folks. Above all, we covet your prayers for our family. Even if nothing medically conclusive comes from this experience, we can conclude that we are emotionally and physically tired.

God walks with us, for which we give thanks.

spot


Monday, April 5, 2010

Monday

This afternoon Janneke was transferred to McMaster Children's Hospital in Hamilton. She has not had any seizure activity since last night, but she will be seen by a number of specialists in the hopes that they can come to some sort of an explanation as to what happened. She will be closely observed overnight before being poked and prodded tomorrow.

Janneke isn't quite herself yet, but she was definitely more alert today than she was yesterday. Sara is spending the night at Mac tonight with Janneke. Emily and Sophia had a busy day in Niagara Falls with Grandpa and Grandma today before visiting Janneke in Hamilton this evening. They are now sound asleep. Rachel just finished her last feed for the day and she is now helping her dad blog. I think she senses that things are not quite right as well.

Your thoughts and prayers are appreciated as we navigate through this latest chapter.

rpot




Sunday, April 4, 2010

pray for Janneke-update

I'm adding to the earlier post. It's almost midnight, and I am home for a bit of sleep. Ralph is at the hospital with Janneke.

Please pray for rich rest - that the little sleep we get will help us through the next few days.

We are so thankful that my parents had planned to visit us today for an overnight visit - so timely considering our new Easter plans. So providential.

After a brief period of rest this afternoon, Janneke started with more seizures this evening. They weren't as long or as "intense" but still concerning. We are waiting for a bed to open at Mac (children's hospital). Yet, the care at St.Catharines General has been wonderful. Makes me want to find a money tree and finish building the new hospital - they really need the new facilities.

Earlier today, it was difficult to get the IV in, and with all the attempts (she's now on her fifth), we wonder about a portacath for her too. But, Janneke is currently in great hands with a familiar face, nurse D. She was so encouraging to Ralph and I when we arrived on the paediatric floor with Janneke this evening.

We cherish your prayers, for we are tired and not always able to pray. Pray for our older two - Em and Soph - as they are quite sad to have Janneke in the hospital. Lots of questions about God, heaven, and special needs.... Now I wish for those questions from earlier in the week about Jupiter and South Korea. Pray that Rachel will heal from her cold, and that she will not develop any complications.

Not sure how much makes sense, but I know you will continue to remember our family. Thanks.

spot


posted earlier today:

Happy Easter.

This morning, we were thrilled to take the whole family to church -the sun was shining and the girls were well enough to travel.

Our joy was cut short when Janneke started a seizure in church. We are thankful that we were surrounded by wonderful people who could help us, and we had Janneke taken by ambulance to St. Catharines General. She continued to seize off and on for the next two hours.

She is still in the hospital and will remain there until we can take her home. They are giving different meds, and we hope to get the full picture of her prognosis soon.

I am writing this because many members of our congregation sensed something was up. Hopefully this blog answers a few questions and inspires all of you to pray for our little Janneke.

We're okay. Sad, but okay. We know all things are in His hands, but sometimes, the ups and downs are bit much. Thanks for your warm thoughts and prayers. We truly feel them.

Peace to you all.
spot