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:


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.


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.


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.


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.