Tuesday, June 29, 2010

running again!

To add to our previous post....

We had a great run tonight at the Grimsby Peachbud 5K! Both Rachel and Janneke loved the run. Thanks, Ashley and Sophia, for your help with managing the finer details - a.k.a. the dirty diapers and broken formula jars.

This was a special 5K for two different reasons: We thought of both Aunt Grace in Minnesota and our cousin Caleb in Hamilton.

Aunt Grace celebrates her birthday today, so we raced for many more years of health and joy. Happy Birthday, Aunt Grace!

We also raced for Caleb -each step forward was a prayer towards healing and strength. I know Jess would have loved to run with us.

Peace to you all.


p.s. Em won her soccer game too.

boat rides and bubbles

It's a beautiful day today; the humidity and heat are gone, and the birds continue to make their noise. Yesterday, we celebrated another win for Holland's team in the World Cup!

Admittedly, this past week, we have also felt sad. It was a difficult week for our extended family as we listened and visited with Jess (my sister) and Tim and their son Caleb. His diagnosis of leukemia is the new normal for them. We wrestle with how to support and help, but we know that God will remain constant, and He knows their needs.

Yet life does move forward for all of us - in hospital or in home. Here's some photos of our past few days. Through Easter Seals (for children with special needs and their families), our family was gifted a ride on Lake Ontario - with the Kiwanis and Dalhousie Yacht Clubs. A special thank you to our captains, Mr. and Mrs. Krall.

Scroll down to the end of the boat photos to see Janneke's newest feat/feet.

Emily and Sophia hanging out with cousin Nella, one of Caleb's sisters.

Our boat ride on Lake Ontario!
All four kids were so happy with the outing.

Janneke with her face painted

Rachel was not so sure.

A real treat for the whole family.

Big news: Janneke received, on loan, a walker for the summer. She is moving her feet and shows signs of dancing. This is brand new news for us - as of yesterday! More posts on her moves to come.

Peace to you all.


Wednesday, June 23, 2010

Brand update

re: the previous post concerning our nephew Caleb, son to Jess (my sister) and Tim Brand

A short note here: Yes, Caleb does have leukemia. It is referred to as ALL (B-cell type). I will leave the rest of the details for my sister Jess to share. It is their journey. She and Tim have really appreciated the support, encouragement and prayers. Their blog will remain a link from ours on the side bar.

It is surreal. I think of our families and wonder why. But, wondering that will waste time. We've got a life to live, children to love - and God to lean on.

Peace to you all and your families.


Tuesday, June 22, 2010

another blog

Shortly after I posted our last post, celebrating the last seven days of normalcy here, my sister Jess sent word to my immediate family regarding her son Caleb. Caleb is four years old, a big brother to sisters Nella and Aleah, and he is also a loved cousin, nephew and grandson.

He loves to lead in worship at church -
here he is singing for us in the livingroom.

This little man is now at Mac, having undergone a bone marrow test and echocardiogram this afternoon in response to the real possibility of leukemia.

We are holding for a miracle - no leukemia, but the little man has endured two blood transfusions in the last 24 hours, and his blood count has not been good.

This all came to a head last night in the ER when Jess and Tim brought Caleb in, concerned about his lethargy and poor response to antibiotics for an infection.

Now they wait at Mac on the peds ward for some answers and a plan for the days ahead. It has been a surreal 24 hours for them.

A journey for them that they did not choose.

I post this tonight because we share some of the same community (and family!) and I have the link to their blog. You can support them in their journey by commenting on their posts, currently set up by my brother Dave.

Please lift this family up in prayer when you can. They are a super family, committed to the inner-city community in Hamilton and so incredibly giving with their neighbours, friends, and family. Jess and Tim have been a wonderful support to Ralph and I... and now we walk those Mac halls with them.



Monday, June 21, 2010

nothing out of the ordinary

an afternoon out!

Another week. Another win for Holland.

Life has been great for the last seven days. Rachel is quite cheerful and trying to find her voice. She has an incredibly cute, hoarse sound right now that gets us all laughing. Janneke is turning her head to all the sights and sounds around her, and she smiles so much when she hangs out with Rachel in the big bed. Emily and Soph are looking forward to summer holidays, and they watch whatever soccer they can with Ralph. Emily is torn between cheering for the USA and Holland, and she is sad we can't find American van flags. (Not a popular item around here with all the Holland, Italy, Portugal, and England flags.)

what are they looking at?

We had a wonderful Father's day here with just our little family. We were able to go to church -and nothing crazy happened. That's a good thing. We came home, finished R and J's feeds, had a sandwich, and then we went to Port Dalhousie (beach on Lake Ontario) until the next feeding time (4PM). We had an "ordinary" afternoon with just our family, and it was a great feeling. To be normal!

Friday, I was at Mac with Rachel, Janneke, and nurse Ruth. We met with our endocrinologist who confirmed our concerns with Rachel and Janneke's growth. I guess you could say we know a small piece of the puzzle now. According to the tests given in the last six months, both Rachel and Janneke have low growth hormones - called hypopituatarism. This is actually not that unusual, but our complicated feelings sit in the answer of treatment.

Low growth hormone levels teach us two things. The first is that seizures in the first year or so of life are common because growth hormones also affect the blood sugar level. That would explain Janneke's seizures. The chance of more seizures decreases in likelihood as the child progresses into second year. That's good.

The second thing we have learned is that Rachel might not grow any taller. She hasn't grown since she turned two. She is now four years old. She could potentially stay this small. And Janneke will most likely follow that pattern - we'll see when she reaches her second birthday.

Low growth hormones can be treated with daily (needle) injections of steriods. This is something other normal kids with low growth hormones endure. But our kids are not normal.

There are some complicated questions to answer, and I hesitate to type them in a public way. What we decide to do with our girls and their growth is not something we will figure out overnight.

Presently, it does not seem wise to proceed with steriod treatments; the benefits would not greatly improve their quality of life.

In the meantime, we have some thinking - and a lot of praying - to do. Thankfully, there is no pressure to begin treatments or make a decision. There is time to wait and see. Again, it is only a small part of the puzzle; we hope to discuss this with our geneticists as they add these test results to our file.

So, we will wait and see, and we will enjoy the ordinary moments with our family. Our love and our care plan for our girls has not changed. We look forward to more days at the beach, playing Connect 4 on the trampoline, and teaching Em and Soph how to shoot a basketball.

Rachel and Janneke hope to complete the Peachbud 5K next week!

a special visit with Opa and Oma



Monday, June 14, 2010

cardboard boxes

It's the end of another Monday. The day started with a great FIFA soccer game (hup, Holland, hup) bright and early, and it helped that half-time came at the moment when Emily and Sophia had to leave for school. They could not be dragged from the screen otherwise - daughters of their father!

Life in the Pot house has been somewhat settled, and that is good. We would love for both Rachel and Janneke to sleep through the night, but that has not happened - well, for a long time.

Regardless of the sleep issues, we are so thankful for the slow but progressing healing for Rachel. We have been doing what we can to remind her of things she loves, trying to trigger her smiles and other familiar responses.

We have found that her smiles come quickly when we play Robert Munsch (Canadian story-teller with a very expressive voice). She still seems easily overwhelmed, so we have tried to keep life simple. We are optimistic her regression is temporary.

I took her for a 5K run this afternoon -her first since the PCCU visit. I was not sure how she would handle this. Normally, she leans forward, waves her arms and feet and babbles most of the way. Today, she kept her hands close to her mouth, her way of remaining secure, and she did not move her body. Yet, at the end of the run, I heard a "mmm" sound and stopped to look at her. She had a huge smile on her face. That was cool. That's why I run.

Thanks for your love. Come and cheer us on at our next race; support the NPCC, a place for growing, for Rachel and Janneke.


p.s. in the meantime....

So, what do you do with a cardboard box?
Why, make cars out of them, and jump on the trampoline.

Places to put your baby sister...

Wednesday, June 9, 2010

after the race!

is the trunk of the van a sterile environment for preparing a g-tube feed?

Well, Janneke and I ran that hill in the Old Mill run after all. Last night, the two of us slipped out to Ancaster for a good 5K race. It was nice to share the event with cousins Dan and Sheila and (almost cousins) Dave and Amy. We ran without stopping, yet I had to slow down considerably to avoid running over three different squirt soccer teams who also ran the 5K. I felt like they swarmed the stroller for most of the race. Wouldn't we like to tap into that energy!

Janneke was a great co-runner, and like Rachel, she finished just ahead of me. She did not enjoy running before, but she seems to have changed her mind! Thank you to the Bosmas and Anne V who were cheering for us at the top of the final hill -that was very encouraging.

With Rachel and/or Janneke, we will continue to run. We look forward to the next race; it's tiring, but it is empowering.

Rachel is still recovering slowly, but her progress today has been hindered by another fever. We have been discussing her symptoms with the pediatrician. I feel a bit frustrated with what appears to be more discomfort or pain for my baby. Pray for healing for Rachel.


Monday, June 7, 2010

A short note for a Monday night. Rachel has been home for two sleeps. She is slowly mending, the emphasis on slowly. She protects her mouth with both hands, and she trembles when we work with her to change her clothes or move her. Her eyes open wide at times, suggesting fear, and she rests a lot - but doesn't sleep well. I suppose having a tube down your throat, being sedated, and having your arms tied to the sides of the bed would make anyone a bit traumatized.

Here's hoping we see more signs of our little ray of sunshine soon. It is hard to be patient with the healing. For now, we will try to cuddle her when she allows, and try to remind her of the good things with her music and favourite stories. We look forward to hearing her voice, but we can imagine her throat is too sore for any sound just yet.


Saturday, June 5, 2010

A remarkable turnaround.

Rachel is home. We are all home together again.

We are thankful and amazed. For now, Rachel is sleeping, and she has some antibiotics for another week. We have nursing care at home today; we were a bit apprehensive about taking her home, but so far, she is doing really well.

greeting her little sister

Thanks again for your encouragement. Our next visit to Mac will be as an outpatient for some followup discussions this month. We would prefer not to sleepover.

Now we can get excited about other things - like drawing the solar system on the driveway, playdates and birthday parties, and World Cup Soccer.

in His grip,

Friday, June 4, 2010

It is so much easier to blog about good news! Late this afternoon, Rachel was successfully extubated. Simply put, the breathing tube was removed, and she has been slowly returning to her silly self. Right now, Ralph is spending time with her in the PCCU.

From last Friday with our fears and tears to this Friday, it seems so much time has passed and yet it has only been one week. We are so thankful that with this one week, we can move from sadness to celebration. The range of emotions is exhausting.

Rachel is still in PCCU, and they are monitoring her tonight. If she continues to heal and progress, then they will make a plan for her to return home.

Being back at Mac, we were reminded of the complicated feelings that we experience with hospital living. Walking those halls, we see a lot of different kinds of sick. There are children pulled in wagons or toddling beside a parent attached to several IV lines. Yesterday, I saw a little boy that lived in the NICU next to Janneke in March 2009 - and he is still in hospital (in the children's ward).

It's hard to explain the complicated feelings; you feel torn between your sorrow with your own child and then guilt because there are other families whose burdens seem so heavy.

But we are so thankful that tonight, Rachel could be held by both Ralph and I, and that her eyes were once again alert. One of our docs said that this experience was only one example of caring for a child with unique needs - what may seem ordinary suddenly becomes risky. He agreed with our goal to focus on both Rachel and Janneke's quality of life. A test is only worth risking if it helps us improve their care and quality of life.

I think we are done with tests. Now we want to bring the girls to a lake, blow bubbles on the deck, go for runs along the canal and chase the geese. We want to be all together at home.

We are thankful for the care from the nurses in the PCCU, for the nursing care here at home for Janneke, and the respite help from Ashley, Kirsten, and Giovanna when the nursing hours were not available. We are thankful for friends and family who helped with Em and Soph, brought meals, flowers, and little surprises (laundry soap and freezies!) and prayed for our little ray of sunshine. These expressions of His love are not forgotten; they help us keep going when we feel like quitting.

We will let you know when Rachel is coming home, and we will continue to keep with updates on our family's life. This blogging thing is odd - a public view of a life we'd rather keep private. Yet we know in sharing our story with you, you are company for us on our journey. Thanks for sharing our joys and our sorrows.


Wednesday, June 2, 2010

We appreciate your prayers for Rachel and our family. She remains in the PCCU at Mac. To clarify, this is the intensive care unit for children. She remains intubated and sedated - and has been that way since last Thursday. The sedation is primarily given to keep her relaxed given the tube in her throat.

What we suspect happened was that her body reacted to the sedation process for her MRI. In addition to the bronchial spasms, she may have had some bacteria in her upper airways (typical for both her and Janneke), and with the intubation, the bacteria was likely pushed down lower into her lungs. The staff are treating her for pneumonia, among other things.

Apparently, this is not common - but it does happen. What is frustrating is the time factor. Rachel needs a lot of time to heal. She continues to rely on pressure support for her lungs (which makes sense if her lungs are infected) and some oxygen for breathing. When she can have a quiet and stable 24 hours where they can slowly wean her off the lung support and O2, then they will consider extubating. What has complicated matters is that she has developed fevers on and off (even though she is on an antibiotic) and she has required more O2.

There have been other concerns, but this is the update for tonight. We appreciate your kind words and prayers. These have been long days for our family. Both Em and Soph miss Rachel a lot; they have not seen Rachel since before all this happened.

We are unsure as to when the family can all be home again. The staff have said this may take quite a bit of time.

For the time being, I am at Mac during the day for a couple of hours, and Ralph leaves after supper. There is not a lot we can do, but it is important that we see her (and connect with the staff).

Time will tell. God knows.