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.

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.

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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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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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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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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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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