Tuesday, December 22, 2009

warm wishes




It's getting close to Christmas Day. With this virtual connection, we can wish you all a Merry Christmas and Happy New Year on time and without getting stuck to the stamps.

May the Lord bless you and keep you. May His face shine upon you in 2010 and bring you peace.

Thank you for your prayers, support, and encouragement. We move forward in faith that some day all things will be made new, that God will make things perfect and right again. For now, we trust that He will walk with us through the ups and downs of life.

Please continue to pray for our family, particularly for the health and wellbeing of Rachel and Janneke.

In His grip,

the Pot family

Wednesday, December 16, 2009

elephants and doctors and Bulldogs


How do you eat an elephant?

More on that in a moment.

Today, Rachel and I headed to Mac for a long day of hormone testing - hers, not mine. But the testing was not meant to be. As with previous tests, I reminded the staff that Rachel has next to impossible access for veins. This is an integral part of testing and getting any information from Rachel - from her blood.

After trying unsuccessfully, both bloodwork technicians were frustrated. So was I. Rachel doesn't really react to the pricking and poking initially. Sometimes that means the techs will try for longer than with other children who might scream or cry. Yet, later on, she is tired and bruised - and I am sad for her. This morning, the technicians seemed almost frustrated with me, but I think it was the situation. They told me it is not fair of the doctors to order all these tests if we can't put an IV in Rachel. They told me to tell the doctors Rachel needs a portacath.

Well, that was the conversation we had with a surgeon back in May, and he discouraged the idea (argh!). Yes, no, yes, no.... so many opinions. It's hard to advocate for your child when the professionals have differing philosophies. I also wrestle with how pushy to be. It's my nature to try to form a relationship with the professionals, so they will remember our family and help us. I know if parents are too pushy, they are sometimes ignored. This morning, I was told to wait for some phonecalls for rescheduling, and after two hours of waiting, Rachel and I left for home.

So, this business of advocating for our kids is huge. Kind of like eating an elephant. How do you eat an elephant? One bite at a time. Today, I felt like biting a doctor.

I bit a good cranberry blueberry bran muffin instead (thanks, Tracy). Tomorrow is another day. We really hope R and J get healthy soon;it has been a long and tiring fall. Both girls are still not 100%, and Rachel has been losing weight because of her recurring reflux. With some good sleep and good health, the doctors stand less of a chance getting bitten.

(Funny part about the day - players from the Hamilton Bulldogs were visiting the children bedside this morning. While other children were clamouring for autographs, Rachel fell asleep. Maybe if one of the puppets from Baby Einstein came instead, she'd stay awake. Sorry guys, but thanks for the souvenir.)

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Tuesday, December 8, 2009

cooped in



Another week here... We've had some cancelled plans in the last week due to illnesses -both Rachel and Janneke are dealing with colds and infections. So, what do you do when you are housebound? Experiment with iPhoto.


Yes, this is Emily.





We've toured one school as a starting point for our decision on Rachel's schooling. It's tremendously overwhelming, and we are not sure what will be the best scenario. We will be meeting more school folks and talking with our team at the children's centre in February, but the idea of letting Rachel go to a classroom is already unsettling. Yet, she loves to be with other children, and we want to give her the opportunity to grow in an environment that can meet her needs. More on that to come.

I had to change Rachel's g-tube this morning, and that was more difficult this time than before. We replace the tube every three months because she usually has some kind of infection developing by the three month mark. I am still caught off guard at times when I see this small hole in her torso, and I know I have to somehow squeeze the tube into the hole, so she can eat. Crazy.

Looking ahead, we've got some testing at Mac next week for Rachel, and hopefully a chance to celebrate Christmas with family next weekend. I'm really hoping all four girls get and stay healthy.

Thursday, November 26, 2009

blueprint study

Yesterday was the annual visit to genetics at Sick Kids Hospital in TO. It was a lovely drive through fog, rain, and wind - at least it wasn't snow! The genetics counsellors and geneticists are following both Rachel and Janneke as they grow and develop. Meeting with them is helpful, though often more questions are raised than answers. They also speak an entirely different language (big medical terms), and we tease them about that as they are examining our girls.

We are blessed with very compassionate and intelligent specialists. They are obviously intrigued by our girls for research reasons, but they also desire to help us in caring for Rachel and Janneke. When we are discussing our family, they also ask how we are managing. They seem to understand this is more than just looking at two kids with an unspecified syndrome.

And that's where we're at: an unspecified syndrome currently under investigation. We did learn there may be another family in Canada with a similar situation (two siblings with similar characteristics), but only time and more testing will tell. We have been reminded that this is a unique circumstance; there are no clear cut explanations.

I guess that is where it gets tricky. Do we need a diagnosis? Some say "labels belong on cans - not people" yet when a child has an official diagnosis, it validates the concerns a parent has with their "not-normal" child. It sounds strange, but with a diagnosis, you have a sense of belonging - to a (albeit small) group of others like you.

For now, we have more testing ahead, mostly of Rachel since Janneke is too young. Rachel will have hormone testing in mid-December (a full-day procedure), a sleep study soon, and an MRI in the new year. Hopefully, these will help add more information to the question of a growth-hormone deficiency.

Tomorrow's job is to find a good kids' video on DNA, our secret code - God's incredible blueprint. Em and Soph are asking more questions about genes and chromosones, and I need a quick science review. Oh, and yesterday, we were asked yet again if Ralph and I were related. Since we both share Dutch roots, we've been asked that often. We realize Holland is a small country, but I think it's safe to say we are free from intermarriage going back at least a few generations!

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Happy American Turkey Day. Have fun shopping tomorrow at 6 AM, Carla.

Tuesday, November 17, 2009

hello again

Everyone needs a little therapy.... This is a pic of Rachel, her older sisters, and her cousins from Aunt Jess and Uncle Tim.



We are managing things here at the home front. We are waiting to hear the scheduling for Rachel's sleep study (a slumber party with Dad at Sick Kids!) and the hormone testing at Mac in Hamilton. In the meantime, we will take a day at Sick Kids next week to meet with genetics. Perhaps we will learn more to help our girls - or we will have more questions again. Not sure of what to expect.

We started reading with Em and Soph "Views from Our Shoes" a book on loan from Tammy who knows too well the journey of being a sibling to someone with special needs. (We decided we will write our own book, Thoughts from the Pots.) Views from Our Shoes includes short notes from kids, ages 4-18, who write about being a sib to someone with special needs. The writings are honest, funny, and sad. It has been good to read as a family.

Here's a couple of snapshots of Janneke and Rachel. They are beginning to interact a bit together. Rachel likes to put her hands on Janneke's legs, and Janneke crinkles her eyes (her smile) at Rachel.







Thursday, November 5, 2009

another week


We are in the middle of an unusual week - several appointments in three different cities. So far, we've been to Hamilton for the pediatrician, TO for sleep assessment (do you call them sleep doctors?), and Kitchener for vision follow-up. We also had a phone conversation with genetics at Sick Kids, and we will be visiting them in TO at the end of the month. We are currently investigating the possibility of a growth-hormone deficiency in both girls. Tomorrow is another appointment at Mac in Hamilton. We are learning new things about both Rachel and Janneke, and we are blessed with patient doctors who took a lot of time to meet with us. Interestingly enough, the first thing our pediatrician asked about was me - How are you coping? he asked.

Good question. This past week, the dragon of overwhelmedness came and I couldn't find my sword to slay it. When your confidence and strength breaks down, when you feel as if you are suffocating, it's quite probable your body is saying ENOUGH. And so my body spoke. Ralph was able to take some time off work so he could help me out. Without going into the rest of the details, I'll simply say it's interesting how those lowest of the low moments are actually good for you, causing to review what is truly important. Frustrating how those same moments shake you to your core and make you feel vulnerable and even ashamed.

Yet, blessings continue to abound. Though we were managing with our own meals, the week that everything came undone, we received over twelve meals (for freezer too) from four lovely women. Carolyn came along to the appointments when Ralph could not. Neighbour Nancy has been furiously raking our leaves, for which we are grateful, and neighbour Mark was willing to stop by last night when we had some concerns about our van. We know that God continues to work through His people.

Rachel's stander arrived last week, and she is loving the upright position. I wheeled her to the piano for the first time in the stander, and her hands immediately extended out to play the keys. She absolutely loves being a "big kid". We are so thankful for her joy-filled disposition, giving everyone smiles as we go from appointment to appointment.

Janneke is improving health-wise, and she is opening her eyes wider now. I say that because her eyes are not big to begin with, and her actual smile has yet to come. Instead, I feel like she is communicating through her eyes, and in the last few days, she's been trying to "say" a lot.

We have started work on our therapy room. It already has a ball "pit" - a wading pool full of small balls that all four girls love. It is a crazy toy to put in your home, but it provides an unique sensory experience for Rachel and Janneke. (Thanks for the idea, Bernice.) Now Em and Soph have to quit the target practice on each other with the balls... : )

Thanks for your warm fuzzies and prayers. I think most of us to some degree would like to think we have "it" together, but truthfully, aren't there times when that is far from the truth? Perhaps the more we are honest with each other, the more we can also trust each other and encourage each other as we move along this journey of life.

Peace.

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Sunday, October 25, 2009

advice on air purifiers?

Last weekend truly was the brief reprieve I described it to be in the last post. Since then, we spent the week and this weekend working through another virus or flu strain. By Thursday night, we took both Rachel and Janneke to the doctor and started an antiviral drug and an antibiotic. By Friday afternoon, it was clear that they were fighting a common virus as well as an infection -with teething and ear aches. Yes, we hope to vaccinate our family as soon as possible. As the recent Maclean's (magazine) article suggests, 1 in 3 will be fighting a flu (if not h1n1) this season!

Friday was a day to save some family sanity as well as avoid any more viruses from school. Both Sophia and Emily have been dealing with colds too, so they slept on and off that day. When the nurse came for the Friday shift, we could also get back some mom-daughter time that had been lost earlier in the week, with all the attention going to Rachel and Janneke.

We enjoyed a break from the home on Saturday (thanks to a VON nurse) with a birthday party for Emily. We hosted the party at school - for space and also health reasons. The girls were a lot of fun, and it was great to celebrate with Emily.

Sunday was a day to take care of our family as a whole. For this day of rest, we are thankful to Him. We do find it difficult to actually rest, yet we appreciate the space away from appointments and extra folks in the home. But, don't get me wrong, I am thankful we have a nurse coming again tomorrow! : )

Crazy girls: all those toys in the basement and they play with laundry baskets. How do an 8 yr old and a 6 yr old fit in that space?



While some of the family spent time outside in the leaves, Janneke watched from the window. Sophia came in to sing some songs so she wouldn't feel lonely. You'll notice the two containers on the feed pump; whenever the girls are not being fed formula, they are given a slow water drip (like an IV). This helps avoid dehydration.



Rachel felt well enough to be re-introduced to the season of fall today.



So, we're a bit tired of all this flu business, especially since it's only October. My daily schedule is now more than one page to help me keep track of who gets what med when. Yet, we were caught by the beauty of today with the sunshine and the brilliant fall colours and by the compassion and love our older two girls have for their younger sisters. God does give new strength for each day. The waning strength of today does not need to be stretched to cover tomorrow.

WAIT, I almost forgot... we need some advice (only advice): Can you recommend a good air purifier for our home? We are very serious about putting one in our home. What do you recommend? Do you know someone we could trust? We've already had the salesman with the scare tactic. No thanks. Please email us if you have any helpful advice or names to pass along: rspot94@vaxxine.com

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Tuesday, October 20, 2009

moving through October


In the midst of the various viruses our kids seem to be fighting, we had a "cease fire" over the weekend. Friends of ours from Michigan arrived Friday night for their long-awaited weekend to Niagara! We wondered if the visit would ever happen since both Rachel and Janneke seem to be going from virus to virus since the end of August. But, we had a pocket of time over the weekend: two nights of peace, two days filled with laughter and new memories, and no noticeable signs of illness. Thanks for the great visit, Eric and Kim!

Crazy part is, soon after our friends left for home, Sophia came down with a cold, and both Rachel and Janneke were upset throughout Sunday night.

One thing struck me from the weekend's adventure: Our kids need permission to deal with their conflicting emotions about being siblings to Rachel and Janneke. It's after visits with family and friends with kids the same age as ours that specifically Emily seems to notice the differences in her sisters and our family. She sees the two year olds running around, and tries to piece that together with her three year old sister who can't eat or roll over. Her comment: I like it (special needs) and I don't like it.

We did have a wonderful time visiting Niagara Falls and going on the Maid of the Mist (first time!). Sophia said she would never go on that boat again in a million years. She doesn't like getting wet. Our friends' kids commented on the power of the water being evident of God's incredible power. Amen to that.

We hired a respite worker (thanks, Ashley!) to care for Rachel and Janneke while we did the touring Saturday. And there again, Em and Soph were reminded that we were different - not complete - with part of our family missing. And they don't like that. As much as we want to give the older two a break away from home, they love to be with the six of us - not in parts.

In the next couple of weeks, there are a number of appointments scheduled for both Rachel and Janneke. One of the weeks, I am in three different cities! Concerns rest on the fact that Rachel is not growing - in length and in weight. Bloodwork is recommended to check various levels (such as protein), but with no visible veins, I am not looking forward to watching the techs needle-poke Rachel up and down the arms. I am hopeful we can learn more about how to better our care for both girls. We'll keep you posted.

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Sunday, October 11, 2009

birthday time



Moving on from swimming to celebrating... In the next 10 ten days, Sophia turns 6, Emily turns 8, and Ralph, well, he is also getting older. Sophia has already planned most of her "harvest" party, complete with small gourd display she made from Aunt Rhoda's collection of gourds. This afternoon, she made giant paper pumpkins, so the guests could play musical pumpkins. Emily's party is still in the planning stages; her party is later on in the month. It's fun to see how excited they can be and how grown-up they are in planning their parties.

And sometimes we wonder if they had to grow up too quickly with the arrival of their special little sisters. They are amazingly flexible now with sudden changes of plans due to health concerns. They know they have to scrub their hands as soon as they walk in the door from school or other places. They help with giving flushes (syringes of sterile water) to the girls when we can't. They love to cuddle with their sisters, and help with suctioning, giving comfort if Rachel or Janneke is scared. They teach Rachel how to play, and try to get Janneke to hold toys. Today, Sophia tried to cheer up Janneke by putting on a finger puppet show complete with ocean animals and songs. Tonight, Emily is making toe jewelry for Rachel.

They don't ask too often about how different things are in our home now; it's normal to them. We love you and we are thankful for you, Em and Soph, and we hope God blesses all of us with many more years for you both.





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Tuesday, October 6, 2009

running and swimming

So, I've got this air cast on for a couple of weeks to heal a stress fracture. My running with Rachel (specifically pushing a stroller) took its toll on my leg. Now I have been sent to the pool to run; no impact cardio for me for awhile. Running in the pool is strange. The workout completely changes from shallow end to deep end; my whole running motion has to compensate when I can't touch the bottom. (I also have to convince the lifeguard that I'm not drowning, I'm "running".)

If life were a pool, I would say lately, it seems as if I can't touch the bottom anywhere. I think the adrenaline has run out. When Rachel was born, we were ready, albeit scared, for an adventure. Now with Janneke, it's the same adventure, and we aren't having the same surge of energy anymore. I keep going back to the image in my mind of when Janneke was first born. Words can't describe the look Ralph and I shared when we saw her. We wanted to rejoice, but we wept and wept.

This week, both girls are fighting another virus, yet their spirits are good. We have minor concerns with them, health-wise, but nothing major. We have noticed that with each virus, Janneke seems more introspective; she is less vocal and interactive with us. Her eyes move from place to place, but the small sounds she was making are fewer and fewer. Rachel is laughing a lot lately, but sometimes she laughs when she is in pain. It's tough to figure out if she is truly happy or if she is telling us something else.

I guess we can't swim in circles, worrying. But, it is important to be honest with the feelings of sadness, concern, and being overwhelmed. I find the more I try to downplay those emotions, the more I hurt myself in the end. It's okay to say you are unhappy. It actually frees you to find genuine joy instead of always "making it work".

I talked with my sister Jess last night. She was talking to me about walking outside - in the spring, you embrace the temperature of 10 degrees (C) because you know soon it will warm up. In the fall, the 10 degrees (C) reminds you that it will only get colder, and you are not so excited. That got me thinking another analogy (!): In our home, we don't know if it's going to get warmer or colder. With the older girls, we knew the stages of childhood and development. What about R and J? We are always moving from feed to feed, from med to med, without much pause for breath. When I want to look ahead to something, I am not sure what I see. The whole swimming-in-deep-water is tiresome when you are far from the shallow end.

thanks for reading.



Funny sides: Sophia just got a new helmet for skating. She loves the hockey helmet so much that she has been wearing it all the time. Her hockey-loving uncles will be proud to hear that she even tried to sleep with it on. Emily is learning to play recorder. Why the school insists on this practice, I am trying to understand. I just wish they sent home ear plugs for the parents. She is getting better - and our ears are adjusting.

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Thursday, October 1, 2009

school talk

This morning, we had our weekly session at the children's centre. Janneke receives physio at 8, and then Rachel alternates each week between physio and OT (fine motor skill practice) at 9. The therapists often discuss with me the goals for the two girls, and we also talk about future plans. Today, I was reminded that Rachel will be eligible for school in the fall of 2010. Wow. Ralph and I have to learn more about that transition, and we have some big decisions ahead of us. Should Rachel attend school already in 2010, or do we want to wait until SK age in the fall of 2011? Bigger question: Where does she go to school?

I have not been encouraged by the stories that circulate from families who have transitioned from the centre to "regular" school. When the child is school-aged, they transition also from the team of therapists at the centre to the team available through the community programs. That means a switch from not-for-profit children's centre to profit-based agencies... and the range of experience and training is wide. From what I have heard, the transition for some families has been difficult.

I try to picture Rachel in the classroom, and I can only wonder from a parent's perspective and my teaching perspective as to what it all looks like. It makes me smile to think Rachel potentially would enter the classroom like a queen with two assistants - an aide and a nurse.

When we talk what kind of school, I am reminded of our visits to Elim Christian School, a school specifically designed for children with special needs. Back in our Minnesota days, Ralph and I used to take our grade 8 classes through the school for a 2 hour tour when we had our annual class trip to Chicago. Yeah, that's where this amazing school is, Chicago. Sigh. Even when we would ask the students to rate the various aspects of the trip, they would give Elim (and the bus ride!) the highest points - compared to touring Navy Pier, Shedd, and Sears Tower.

Well, at least we don't have decide today. As Rachel's posture suggests, I shouldn't worry.




And speaking of today, HAPPY BIRTHDAY to LAURA, my marathon/iron(wo)man stepsister way far away in Victoria, B.C. In two days, she and Rhodes will be getting married. Most of my family is there already, celebrating. We will celebrate over here - and wait for an Ontario reception. Congratulations to you, Rhodes and Laura, and may your day be a blessing to all who witness.

Saturday, September 19, 2009

eye see




The girls saw the optometrist the other day.
We are adjusting to their new eyewear.

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Tuesday, September 15, 2009

on the mend

It's Tuesday night. Rachel is watching me post this entry... so I better watch what I write. By the way, I (Sara) tend to be the one who "blogs" now. Ralph will post from time to time.

After two weeks, our health is mending. Two weeks does not seem long, but when you are in the middle of it, and not sleeping much, two weeks seems very long. I am thankful that Janneke is finally sleeping better and breathing better. We were able to get some ventilin for her (puffer/inhaler), and that seemed to help her through the tougher moments. What is discouraging is the amount of saliva she now spits out instead of swallowing. When Rachel was this age, she too went through a couple of viruses that set her back from swallowing. We still hope to try some oral therapy with baby food. Rachel had some success with this at the same age, but with the number of illnesses that came in the winter months, much of those gains were lost.

Rachel was at Mac today to visit with her plastic surgeon. He is the guy who is monitoring the development of her hands. When you meet Rachel and Janneke, you will notice the unique shape of their hands. Their two middle fingers on both hands are permanently bent, forcing the hand into a permanent sign language sign of I love you - or a heavy metal music fan. Sometimes, this is corrected with surgical intervention or hand splints. We did try the hand splints with Rachel only to have her slip out of them. So, we've just been working on massage and then hand play.

She made the surgeon smile today with the way she is using her hands, playing with her fingers. She even laid her hand on a crayon and made it roll around on a picture, adding a shade of colour. That made my day. I think I will look into melting some old crayons in a muffin tin to make palm-sized crayons. This might be the start of a new art career for her.

Something noted: I find the curious looks of strangers difficult at times, yet I am reminded of how our pharamacy team knows us by face -prescription for Pot is hard to forget, and when I went into 2Q at Mac today, they said, "Hey, we haven't seen you in a while. How are things?"

Funny comment from the week: Sophia told us she couldn't run home from school because she had a crank in her side. I think she meant cramp.

spot

Thursday, September 10, 2009

trying to swim

On Tuesday, our family celebrated Oma deWit's life. It was good to be together, and there was laughter with the memories. My dad participated in the funeral service and likened Oma's life to various seeds... one seed being a sunflower seed, a plant that always turns to the sun. Oma always pointed to Christ (the Son), no matter the trial.

Another seed Dad used to describe Oma was the popcorn seed, a tough seed that softens (and sweetens) under heat and pressure. That made me think.

The reality of things in our home is hitting me harder these days. Maybe it's the lack of sleep, maybe it's the change of pace with Em, Soph, (and Ralph) in school. I took Rachel into a restaurant recently, and for the first time in a while, I was uncomfortable with the stares of the restaurant patrons.

One of the pastors at the funeral home read Isaiah 43 to our extended family as a means of comfort. I took to heart the words, "When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you." Life sometimes feels like "the waters" and there comes a vulnerable feeling, like you suddenly can't touch the bottom while you are swimming.

But... when we hear those words from Isaiah, we are reminded life -come heat, pressure, fatigue, or curious stares- will not consume us... God is the consuming fire, and He will refine us, shape us, mold us, and guide us to the end of our days.

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Saturday, September 5, 2009

in His arms

I had some time last night to reflect on previous postings, specifically the one about my oma. This morning, I learned that Oma deWit, Neeltje deWit, went home - to be with God. She died quietly at 7 in the morning in her room in Exeter, Ontario.

We will miss you, Oma.

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Friday, September 4, 2009

more than green





It's been a week. A week of cancelled appointments, playdates, and weekend plans can only mean... Janneke and Rachel took a head start on the cold and flu virus season.

To catch up... Last weekend was another successful time away with the DeJonge/Fluit extended family. Fourteen adults and fourteen kids all together in the rain. A great memory was made with the older kids sitting around the campfire, listening to some of their aunts and uncles tell stories from their childhood. Both Emily and Sophia went to bed that night with smiles and a desire to hear more... about painting a couch with honey, falling out of a moving car, throwing up on the kid in front of you during a Christmas program. What Em and Soph don't realize is that the adults also cherish those times of sharing since we became a blended family after childhood. Sharing those early memories connects the family even more so.

But, back to this week. Monday night, both little girls were dealing with fevers and colds. This makes it difficult for them to swallow and then manage their feeds. To put it politely, they throw up. Rachel seemed to be dealing with a cold and ear ache at first, but she is in great spirits right now. Janneke is still fighting something - a virus? an infection? Not sure. She's been to see the doctor twice, and she is on antibiotics. I am thankful for the home suctioning machines, the nurses in the afternoons, and wonderful volunteer help for my mornings. Tomorrow I hope to be thankful for more sleep.

Tonight, we had a wonderful dessert prepared for us -and our Michigan friends who were planning to visit. (With both Janneke and Rachel being sick, and the week falling apart due to other reasons, the trip was postponed.) Joanne, the dessert was a real treat considering our disappointment with the cancelled plans. I'd say the dessert was a party in my mouth, but Sophia's words are even more complimentary - "Mom, my stomach is celebrating!" Luke, tell your family we'll see about getting another dessert made for your visit.

Lack of sleep is yuck. It makes me feel sorry for myself and feel overwhelmed with the simplest of tasks. I find myself fearing future illnesses and wondering how on earth we will take care of our girls - all four of them. Here's to more sleep and less coffee... and a brighter outlook for tomorrow.

Overheard: Sophia comforted Janneke during one of her spells - "Janneke, it's okay. I love you even more than the colour green."

Step of progress: Rachel kicked her legs in the bath this morning, splashing me. I thought I saw a smirk on her face. She's never kicked her legs in the bath before.

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Sunday, August 23, 2009

soccer


Well, yesterday's soccer tournament wasn't exactly the success we'd thought it would be. Sophia did get her goal in - two, in fact. She played two great games in the hot, sticky weather. We were so proud of her! Unfortunately, both of Emily's games began and then were cancelled due to lightning. There were some ferocious storms both on Thursday night and yesterday, preventing Emily from scoring her goal - or even playing. One sad soccer star.

An anticipated highlight was having both Rachel and Janneke along for soccer this week. Normally, we have care for the two of them, but this week, our caregiver decided to go help in another country (go, Kirsten!). I think taking the whole family would have worked better had the weather cooperated. And you think we would have learned from our experience the first time - but no, we tube-fed in two thunderstorms on two different days, starting along the sidelines of the soccer field and then racing to the van.

Despite the nutty weather, both Rachel and Janneke stayed awake for the parts of the games that happened, and every time we cheered out loud, Rachel would yell out with a huge smile on her face. I think seeing and hearing that was worth the soaking!

Friday, August 21, 2009

untitled


It's Friday night. The formula has been made, and I am about to give Janneke her last feed of the day. Rachel's sleeping through her feed... handy to sleep and eat at the same time. Em and Soph are storing up energy in their sleep for tomorrow's soccer tournament - each dreaming about the goals they are determined to score.

And then there's Ralph... He is back at school most days, preparing for the upcoming year. But, he has also been working hard in our basement, alongside the guys from Frory Construction (for a stellar cellar, call Frory). Our home improvements should result in more family space and a therapy room for Janneke and Rachel. Lawrence, I don't think Ralph took your advice on doning some protective costume before spraying.

Yesterday, I took Janneke into Mac to connect with the neurologist. Nothing earth-shattering was shared, and I waited for two hours to spend five minutes with a specialist. Sigh. Waiting rooms are an incredible test of character. There's a reality show for you. I am happy that there is nothing medically concerning with Janneke's brain at this time. They simply confirmed her developmental delay. Yup, nothing earth-shattering.

Next week, we hope to begin connecting with people who will volunteer some time in our home to help me in the mornings. For me, I am learning that I need to take care of myself so that I am a better mom, wife, person... and I need to put my kids in front of my guilt when it comes to accepting help and asking for assistance. : )

Wednesday, August 12, 2009

untitled

So, we are adjusting to life after a holiday. Mornings are nutty here, and the last couple of days reminded us that our kids, particularly Rachel do tire of all the coming and going as well as being outdoors so much. Rachel had it a bit rough the last few days, most likely due to dehydration. We have taken her swimming, but we forget that being outside, especially in the humidity, robs her of precious fluid.

Rachel dehydrates faster than the other three kids, and yet, because she doesn't ask for a drink, we forget to give her extra fluids. To be frank, this directly affects her bowels. And so we are reminded of her hurdles once again - not being able to stand or move around as well as not being able to tell us she is thirsty. She can light up a room with her smile, but she can break your heart with her cries. Sometimes I wonder if she is trying so hard to get our attention, and we are the ones slow to understand. We're still learning, Rachel!

On a different note, I think Janneke has figured out how to grin. I swear she was grinning at me after her late night feed - but I was too tired to make a party of it.

Monday, August 3, 2009

to Oma deWit




Another update? Well, not exactly. But, this morning, my Oma deWit (grandma) came to mind, and I felt the need to write. She is one tough cookie, currently living large in her nineties - okay, so she's actually small in stature. (Oma, I hope Aunt Jean or Aunt Marie can read this to you.) Oma is recovering from hip surgery right now. She happened to be walking through an doorway during a thunderstorm that caused the power to flicker - and the door to slam shut. The sudden shutting of the door caused Oma to fall and now she is recovering from hip surgery. What are the odds? Reminds me of a previous post....

I have two amazing grandmothers that survived WWII and immigration to Canada (more on Oma DeJonge later). Oma deWit was a young mom when the Germans invaded her town, and I will never forget the story of how she insisted everyone in her extended family eat a boiled egg before fleeing town. She covered her daughter, my aunt Alida, with blankets in a baby carriage and fled town on foot shortly after the meal. Talk about courage - and determination.

There's another story I will never forget from her either. Long ago, she gave birth to a baby boy with special needs. Uncle John currently lives in a Christian Horizons home, and though aged in body, he is very young in mind. Sometime after his birth, my aunt Alida asked her mom (Oma) if their family would ever be happy again. This question caused my oma to realize that living with joy is a conscious decision, one she (and the family) had to make. I am sure it wasn't always easy to choose joy as she cared for all her children, especially John. I took that lesson to heart, and we gave Rachel the middle name Joy.

Oma has buried her husband, one son-in-law, two grandsons and three children, including my own mom. How does she perservere? She always points to her faith in Christ. Her decision to boil eggs during an invasion gives glimpse of her stubbornness, a strong will that leans on God.

The picture in this post of her and Opa sits above our basement stairwell right now because that's where she posted it in her home. I only hope Ralph and I can enjoy many years of marriage as they did, and I hope we can also point to our faith in Christ, especially in the rougher moments.

I love you, Oma. You never cease to amaze me. We are choosing joy.

Saturday, August 1, 2009

family holiday






(Sara's version) Well, we did it. We holidayed, vacationed, got away.... whatever the term. We took the four girls, plus a caregiver (thanks, Katelyn!) and enjoyed the sun and sand of Lake Huron for eight wonderful days! We met with another family, Dwayne and Tracy, and their four kids at my parent's cottage in Point Clark. Tracy had been trained to care for Rachel before, so she was familiar with the tube-feedings. Between four trained adults, Janneke and Rachel were well-cared for. Not sure of the others since Dwayne was in charge of them.

Despite me locking both sets of keys in our van and having to call CAA for help, despite leaving both Janneke and Rachel's medicines at home, despite an odd bout of stomach illness for Janneke, despite leaving two bags of garbage on the front lawn for the skunks after we left today, and despite the fact that I never won a single game of Seafarers.... the holiday was enjoyable and fun for all of us. We were so thankful for the extra help with our family, making our time an actual family holiday.

We were excited to succeed at two day trips to the beach in Kincardine. Our best purchase for the whole family - particularly Rachel and Janneke - was the beach tent which allowed us to tube-feed at the beach free from blowing sand and curious onlookers. We will not forget the look and sound of sheer delight from Rachel when she heard and saw the waves. Emily and Sophia were our water rats this week, and Rachel was content to feel the sand between her toes at the water's edge. (Janneke often napped at the beach. She gave a cry of pure outrage when I dipped her feet in, so that was enough for her.)

So, now we are back. Back to loads of laundry, more visits to the hospital for check-ups with Janneke and Rachel, and time at home with Emily and Sophia before they start school. Sometimes, the busyness and the schedule that must be consistently followed gets tiring, emotionally tiring. Yet, being able to sit in the sand, catch some waves with my family, and see the sunset (midst a million bugs) with Ralph made this week a slice of peace and assurance... assurance that someday God will make things right again and we will savour the beauty of His creation for more than just a week.

Here's hoping we update this blog more often now that August has started... all the best with you and yours. Oh yes, and thanks, Jim and Grace, for the use of the utility trailer. We were quite the sight driving down the highway, but, no worries, your trailer is still in one piece.

Tuesday, July 7, 2009

frame of reference



Today, Rachel met with her occupational therapist and her speech/language pathologist. She wowed them with her progress in terms of reaction and interaction. I (Sara) relayed the story to them of our adventure at Happy Rolph's (free petting zoo) last week. We thought she would love to see the animals, but after coming face-to-face with 10 loud bleating sheep and 1 loudly braying donkey, the fear and terror on her face was heartbreaking. She began to cry and scream (her own unique scream), and she finally settled when I picked her up and held her close. Rarely does she cuddle in, but she clung to me in the moment.

We felt very sad for her because she was so scared, but we, including her therapists, were also thrilled with the extreme emotional response. This was a breakthrough for Rachel, and we hope she will continue to communicate to us how she feels. (We think it has a lot to do with the ear tubes; her hearing improved dramatically last fall after they were inserted.)

Rachel has also progressed in terms of anticipation. She listens to Robert Munsch (very expressive children's storyteller) on cd often, and we are convinced she follows his vocal range and tone. She gets so excited when he gets excited! Our therapists tell us Rachel is forming a frame of reference that will enable her to interact when others talk to her. She has figured out the cause and effect of one of her toys; when she leans forward on the buttons, a song plays. This took her about 10 months to figure out - but it is now part of her frame of reference. Now if Rachel encounters a new toy, she is going to wonder what it might do if she touches it. This from the kid who wouldn't touch things last year without shaking.

Janneke is also progressing with her physio therapy. She has loosened up in the torso and arms; she is not as tense and tight. Her hearing seems to be fine as she hollers out whenever Rachel plays her toy. She is slowly developing head control, and she does not mind to be on her stomach. She seems to respond to the voices of her family and loves to be cuddled by her sisters. Last week, she swallowed some water off a spoon with the OT, but I have been nervous to try this on my own.

The idea of a frame of reference has been with me for awhile. When you become a parent, most of us automatically use other kids as a frame of reference (for rolling, crawling, walking, talking, etc.). When you are a parent of a child with unique, special needs, you don't have a frame of reference; you feel like you are floating, without anything to hold on to. People mean well when they try to relate with their normal kids, but instead of making you feel better, it makes you feel worse. You begin to wonder if there's something with your ability to see a disability or delay. You ask yourself, "Am I imagining the delay?" And you wonder why you feel like grieving when only small milestones are gained.

The fact is, there is no frame of reference, but that can't be changed. So we try not to dwell on that and instead celebrate when our girls make progress. Laughter IS good medicine, and rain is only liquid sunshine.

Hey, looking ahead here: Hope to see you at the Shakespeare in the Vineyard performance July 17! And... Janneke will be baptized on July 19 (10 A.M.) at Jubilee Fellowship Christian Reformed Church. You are welcome to attend the service; there will be cake and coffee afterwards.

Now if we can keep the skunks from returning to their home under our shed, it will be a good week.

Friday, June 26, 2009

Looking Up



So, summer has started! We've had some hot days here in Niagara, but we are thankful it is no longer winter. The days have been filled with bike rides, park visits, and water play in the backyard. Last week, we were blessed with a visit from friends from Minnesota - Carla and her four kids, and this week, cousin Abigail came over.

Funny how kids say exactly what they are thinking. As adults, most of us have filters that prevent us from blurting our thoughts (most of us have these filters). I (Sara) am reminded of last week when Carla's kids crowded around Rachel's crib, asking questions about her. I love that - even when the questions are "How come she doesn't talk, walk, etc.?". Sometimes, it is easier to explain to kids what our two youngest are all about. Maybe it's because they are much more willing to accept the answers. Carla told me later that her kids said they thought Rachel would probably do all those things in heaven. Awesome.

Abigail said our house is a busy place. She's right. Lots of grown-ups coming and going, but it is a good thing. We are enjoying life because we are supported with the every day stuff. With help last week, we were able to take our MN friends touring around St. Catharines. With help this week, I was able to take Em, Soph, and Abigail on a bike hike, and we were also able to take Rachel with us to a splash pad. She loved the water - and loved watching all the community kids screaming and laughing. Sure, a few kids stared at her, but hey, it is a bit unusual to zip through the splash pad in a chair.

Janneke is growing and maturing. She's lost that newborn look, and she is starting to find people and toys with her eyes. Every so often, we see a smirk from her, but no full-out smile yet. She has several different cries, which is great. Janneke is like Rachel was - but with sound. Sometimes, really loud sound. There are several appointments coming up for her, but we are enjoying the short hiatus from Mac at this time.

I started running with Rachel this week. We've done 5K races in the past, so we are gearing up for more. For our first run, she was so alive and excited! In the years past, she would sit still and show enjoyment through her eyes... but this year, she was shrieking, laughing, and moving her legs and arms. She was so animated for our run that by the time we came home, I was wiped - and so was Rachel. Something else new for Rachel - she was able to look up and backwards in her stroller while I ran. She did this several times during our run as if to check for me. I would say, "Yup, Mum's still here" and she would laugh and look ahead again. Reminds me of how I often look for God - and He is more faithful to me than I ever will be to my child.

Postscript: Dates to remember: July 17- Shakespeare in the Vineyard; July 19- Janneke's baptism

Saturday, June 13, 2009

may we be so bold?

Life is pretty stable right now in the Pot home. Sophia has just mastered her two wheeler, and Emily has recently discovered the joy of fishing, thanks to a class trip at Zooz. The school year is winding down for all of us, and our attention is slowly being pulled towards thoughts of summertime fun.

Rachel is healthy and smiling although she (and her parents) do not enjoy the new AFOs (splints) for her feet. Her feet are unusually small in proportion to her body, and even though she had the surgery to lengthen her heel cord, the feet are slowly turning in again. (She was born with severely clubbed feet.) Our hope is that with the new splints and her stander, her feet will allow for weight-bearing.

Janneke seems to be healing (finally) from her cold, and she continues to progress. She has not smiled yet, but she is certainly aware of the noise and excitement around her. She cries sometimes to be fed, and she continues to suck on her soother when coached. We are not sure that she will take a bottle, but there is hope that she will eat solids in time. Thicker liquids/stuff are easier to manage than the runny kind.

All this work for Rachel and Janneke with physio therapy (gross motor skills) and occupational therapy (fine motor skills) is directed through our specialists at the Niagara Peninsula Children's Centre. We are at the centre weekly with Rachel, and in mid-July, we will also bring Janneke for her sessions. We could not manage our girls' needs without the help of our team at the centre. Back in 2006, before Rachel was born, we had no idea this place existed. By October of 2006, we were wondering how we would function in raising Rachel without the place! Now that both Janneke and Rachel rely on NPCC's services, we will do as much as we can to help the centre.

And here comes a bold request: If you have yet to plan some summer fun, consider attending Shakespeare in the Vineyard this July. On July 9, 10, 11 and 16, 17, 18, the Merry Wives of Windsor will be performed at the Henry of Pelham Winery. All ticket proceeds will go to support the Niagara Peninsula Children Centre. Check out the link on the right for further details.

Many of these social services like the NPCC receive funding from the government of Ontario, but they do not receive enough to account for increased expenses, the long wait-list of children requiring services, and the number of therapists children like Rachel and Janneke require. This year, the centre had to cut back some of the jobs, which creates even more of a wait list. It's not the auto industry struggling with a stinky economy; this is about a child's life. The trouble is, these little ones are growing up as time passes. The time that is lost while they sit on the wait-list is a huge disadvantage for their growth and development. Janneke is at NPCC much sooner than normal because her sister is already in the system. But there are many new babies who are home from the hospital and have their own struggles with development - and who can help those parents? And it is not just babies with special needs, it's also preschoolers who need speech therapy or assistance with walking. It's crazy to think that saving money by limiting the funding for NPCC can be a good thing. Those children who do not get the intervention now will only require more intensive therapy later. A savings now will only cost more in the future. Yes, this is our rant.

But really, if you have the time and money, consider attending this event in July. (You'll feel extra classy sitting in a vineyard with a glass of wine -and supporting the Pot girls, our friend Ella Warkentin and many other great kids.) If it's not this event, there are many more to come. We're making arrangements to go on July 17 (Friday). Wanna join us?

Monday, June 8, 2009

Hands On

I had a piece of humble pie with a good dose of laughter this morning. I happened to see a friend who lives eight doors away from our kids' school drive her kids - instead of walk. I teased her for using the van instead of her legs. She got the upper hand when she told me she was going from school to the grocery store so she could make me a meal tonight! Oops. Humble pie and laughter are a good way to start a Monday. : )

Yesterday, we took the four girls to London to celebrate nephew Kyle's baptism and visit with some good friends, Eric and Lisa. We came home tired but thankful.

Know what I loved about yesterday? The way Luke tickled and rubbed his face on Rachel's legs... the way Grandma got down on the blanket and started gentle physio with Janneke... the way Mattie immediately stuck his face in Rachel's face as soon as we arrived and then threatened to spray her in his water fight... the way Josh got down and checked out Janneke and tried to help her with her soother...

I know it's hard when you meet people of all ages with special needs; you aren't sure how to respond or act. What I loved about what I saw yesterday was there was no inhibition, no awkwardness. I love it when others see beyond the chair and the feed pump - and see the kid.

Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these." When he placed his hands on them, he went from there." Matthew 19:14-15




Sunday, May 31, 2009

dancing with the stars

So, this past week, Rachel had several appointments. Per advice of the physio therapist, a stander has been ordered to help her with weightbearing. As ugly and yellow as the stander might be, it will hopefully help her feet and legs to hold her weight. It's on wheels, so we will be able to dance with her. This is important because Emily and Sophia in particular like to dance their stress away. Wait til you see the pictures!

We also discussed with docs at Mac whether or not Rachel should get a portacath. After some deliberating, the procedure was postponed until deemed necessary. Right now, it is almost impossible to find a vein in Rachel's body for bloodwork or IV access. This is a problem in the winter months when Rachel is ill frequently. A portacath can be surgically inserted near her collar bone to allow for easy access. But.. this access comes with some risks, and it was determined at this time that the risks outweigh the benefits.

Janneke is dealing with her second cold. She is sleeping well, but we are suctioning her nose frequently to help her manage the extra fluid. Crazy spring colds! What is interesting is we are seeing her react to the suctioning and the cold as a "typical" baby would. The tears and fussiness, as frustrating as they may be in the middle of the night, hold hope for developmental progress.

Here's a few photos of the last few days. The first photo shows Janneke receiving the soother - called oral stimulation - during a tube feeding with the hope of some day re-introducing the bottle.