"He shall feed his flock like a shepherd: he shall gather the lambs with his arm,
and carry them close to his heart, and shall gently lead those that are with young." Isaiah 40:11

Thursday, March 31, 2011

Two little lambs

Abigail brought this to Rachel this morning to play with.
Her beautiful, tiny hand.
Strangers are sometimes amazed at all she can do with them "for her age"!
She can play with her soother, take it in and out...our little prodigy newborn;)
"We're buds."

Wednesday, March 30, 2011


I turned 34 a few days ago.  I got a big kick out of watching my kids run around the house looking for things to wrap up for me.  "It's a surprise mom.  You can't see" they'd say as they closed doors and whispered and schemed.  Later, these presents were given to Dave and I, my brother and his girlfriend - a stuffed dog, a plastic bowl, small carebears....and then they re-wrapped themselves after the gifts were opened.  Ethan was really concerned that I wasn't having a shaped cake...."You should have a monster truck mom. How 'bout a rocket mom? I bet you'd really like that!" When he found out that it was just a round cake, he said something like "aww...i'm never gonna be an adult - your birthdays are boring." oh Ethan, nothing is boring with you around!

This is pretty fuzzy because it's really a video. Ethan is in the present..
One friend arranged a few surprises for me on the weekend.  She (and her husband) also watched our kids while Dave and I (and Rachel) went out for dinner.  And then last night, we got together with a few families that we haven't seen in a long time and we met at one of their homes so I wouldn't have to clean - thank-you!! We had a great time and the kids were both pumped because there was a good balance of boys and girls.  Dave even made a coconut cake for me from scratch - one that his mom made once and I fell in love with.  It tasted great!!!! Here's a picture of Dave icing the cake with cream cheese icing.

I was feeling a bit gloomy over the weekend - maybe it was all these grey days we've been having. But overall, I feel like my emotions are a little more balanced.  I don't struggle as much with anxiety over Rachel.  Maybe it's because she is more content these days too.  I am sad sometimes but it's not the same kind of grief that I first had, in pregnancy and in the first stretch of Rachel's life.  Maybe it's a new level of acceptance that happens in a journey like ours.  Dave said that he too doesn't feel the same need to know when the end will come. It is good to live without that need to know.  It is good to live without the constant bracing for what her death will bring.  Someone gave my mother in law a poem to pass on to us. I don't know who wrote it but what I wrote just now brought this to mind again.  It seems fitting.  Thank-you for sharing it! 

She wasn't where she had been.
She wasn't where she was going...but she was on her way.
And on her way she enjoyed
food that wasn't fast,
friendships that held,
hearts glowing,
hearts breaking,
smiles that caught tears,
paths trudged and alleys skipped.
And on her way she no longer looked
for the answers, but held close
the two things
she knew for sure.
One, if a day carried
strength in the morning,
peace in the evening,
and a little joy in between,
it was a good one...
and two, you can live
completely without
complete understanding.

She was on her way.

Saturday, March 26, 2011


"If I just flap my arms a little harder....maybe I can fly..."

"Now seriously...do I really have to wear clothes?"

Wednesday, March 23, 2011

Seven pounds fourteen ounces

I took Rachel to the Children's this afternoon for her 5th RSV vaccination. She has one more left and then we are finally done with those.  Rachel was pretty angry with us afterwards but it didn't last long.  I still remember how stressful those first ones were... 

Rachel is now 7 lbs and 14 ounces.  So, she may yet make 8 lbs! These are some pictures of the kids playing with Rachel yesterday.  Rachel has been so content lately! It's wonderful....life feels quite manageable these days.  And having night respite again is so heavenly! We are booked to go in to the Flames House for five days at the start of April as well.  Because we have done such a long stretch without respite, we don't have to be so stingy with hours anymore.  Yay for sleep!  

I tried feeding Rachel some "pear" baby food yesterday too.  One of our doctors has recommended trying to give her some food.  And it's what I expected - this really doesn't work well at all and feels like alot of effort with nothing gained.  It has to be watered down ALOT and even then she can only swallow a very tiny dab at a time. (and after I blow in her face a bit - a trick doctors use to get kids to swallow their medicine) I have found that the best thing to do is to stick the soother in it and let her suck on it.  Kind of fun to see the expression on her face - she wasn't too sure of pear. We have tried whip cream and ice cream before. (same response) But she threw up twice after each one.  We have also tried those rice crackers but she's completely uninterested.  So, not a huge success so far, but I would like to keep trying a few more foods just for fun....I'll let you know how it goes:)     
Getting smothered in kisses over here...

Ethan giving Rachel a bracelet he made for her...from his Chirps magazine

Smelling the Snowball

Yesterday I had the rare opportunity to walk to Ethan's preschool to pick him up.  (Dave usually picks him up and drops him off, arranging an appointment inbetween) I had a nice brisk walk there....and the way back? Yup, it took about three times as long. Ethan needed to swipe some snow off a ledge...slowly....then he tried repeatedly to throw snow at a sign, stick a snowball through a tree branch, drop snow slowly into puddles and watch them disappear, he spread snow over some mud....and he thought it was enourmous fun to throw snowballs at passing cars (I managed to nip that in the bud...eventually) Ethan didn't feel any need to be anywhere soon.  And I shouldn't have either...Dave was fine with having the other two - one of them still napping...And yet, this aggravated me to no end.  Why is it SO hard to slow down and just enjoy the moments we are given?

I knew I needed to choose to 'smell the snowball' even if I wasn't feeling it......And so here we are - being silly in the back yard.  And that sheen on my jacket (which you probably can't see), is the water that Dave was relentlessly chucking at me from the kitchen window.....yeah, thanks Dave.  Ethan did manage to huck quite a few snowballs into our kitchen this way - although sadly, they completely missed Dave.  

Monday, March 21, 2011


Some of you have asked about our older two kids and how they deal with Rachel's spells.  To be honest, I don't usually give this much thought - they usually seem so oblivious to what is happening.  But yesterday, I think we saw some after effects of the latest spell.  Ethan was playing in his room while we were getting lunch ready and he hurt his eye somehow.  He had been trying to fix a broken stick that goes in his monster truck flag and (we finally pieced this together) the sticks must have slipped and hit him in the eye.  I couldn't see anything wrong with it but he cried for a long time.  Then shortly after, he started complaining that both eyes hurt, his head, then his legs, and he stumbled around with his eyes in slits.  We didn't know what to make of it.  I managed to get him into bed and he slept for 2 hours.  When he woke up, he complained again about his eyes.  He was SO worried about them and begged to go the the Hospital.  He didn't want to play on the computer or watch a  movie (my tricks to see if his eyes really hurt) and he just wanted to be held.  (And he usually doesn't have time for hugs) We know that his worries often work themselves out.....but this time seemed different.  Distractions didn't work.  And it took a bit of time for us to realize that he was just desperate for reassurance from us.  

Just before supper, we decided that maybe I should take him to the Children's to get his eye looked at.  Dave decided one last time to offer that the kids could watch a short movie.  After supper we would re-evaluate.  Ethan said, 'ok'. And after the movie, he was perfectly fine! He said to me, "mommy, are you glad that I am ok now?"

It struck me that maybe there was a connection between his obsession with his eyes and Rachel's spell.  I remembered that in the van we had talked alot about her eyes.  Of course they heard all of this.
"her eyes are deviated"
"the right eye is all white"
"her eyes are wide open and they're not blinking"
"I don't think she sees me at all"
"ok, (sigh of relief after many minutes) she blinked" 

Yesterday taught me to pay more attention to how our older kids might be processing these events. And they hear so much more than we realize.  I would sure appreciate your prayers as we parent our kids through this.  We need wisdom to know how to decipher our kids complaints and to know what they need from us.  It doesn't surprise me that they feel that the world is scary and unpredictable.  I feel that way too. (I just read the latest McCleans about Japan today) I pray that they can know and be confident in God's love for them in a world that is full of both beautiful and good things, but also painful things.  Yesterday, Ethan was really needing to know that everything was going to be ok.  And in a real sense, it is.  And will be.  Sometimes I wish my kids didn't have to learn these things so early and yet, I think this experience will deepen their character too.  I hope that they will have soft hearts towards God.  I pray that this will give them greater compassion for others. 

She's 10 Months Old Today!!!

Just realized that Rachel is 10 months old today! Happy Birthday Sweetheart!

Pictures Part 3 - At the Funks

Although we had a good time at Dave's parent's, we were also saddened by a painful event. Many of you know already about the tragic accident that Dave's Dad was involved in. Thank-you for praying for him and for your support by phone calls etc...I know they appreciate them.  One night at my parents, while we were preparing for bed, we got a call from Dave's brother and mom telling us that Dave's Dad had just been in an accident. An approaching car had lost control and it collided with Dad's truck. (bad weather conditions were to blame) The driver of that car died. This is something I can not relate to - and although I hurt in my limited way for him, I don't know what this is like for my Father in law. And I ache for the family of this driver, and I ache because of the losses that we experience in this world.
It seemed providential in a way, that Dave could be with his Dad shortly after the accident. A few days later, all of Dave's immediate family was under one roof too, something that hasn't happened in a long time. Here are a few more reasons why we are thankful that our visit happened when it did.....
Grandpa and Grandma Klippenstein.  This is the first time they met Rachel!
Grandpa was just in hospital again because of Leukemia, and so this was a very special visit. He was so tired but he made the trip to come meet us at Dave's parents. 

Grandpa Funk imparting his wisdom to 5 year old Ethan
Grandma Funk's kitchen has the BEST food....

Feeding the Cows with Daddy


My Cool Guys Snowshoing and Exploring in the Bush

Ethan was an excellent snowshoer!  The Red Shed in the background went up while we were out.

ok, this picture wasn't actually taken during our trip....This is what she wore to church the day after we got back.  I thought she looked so cute... During her spell, I remember wondering if she would ever have the same bright light in her eyes again - the spell seemed so bad I didn't know how she could recover from it....but she did! I am so relieved to see her with this mischievious look in her eye again. 

Sunday, March 20, 2011

Pictures Part 2 - At the Pletts

Rachel with a giraffe she borrowed from Grandma Plett.  And Rachel is wearing pants!!! These are the first pants she has worn in months - they actually fit her waist and are long enough!

Reading Stories with one of their Special Aunties.  I had a good time with you too Evonne!  Helping Mom to clean up some stored stuff downstairs and reminiscing a bit....I'm glad you're my sister!

Dave's mom had a blue chair that vibrated and Rachel loved it.  She would chill with her arms up like this for long periods of time in it...and she would cry if we wanted to hold her. "Put me back!" she'd cry...so we just had to take the chair home with us;) Thanks Mom!

Ethan is usually a pretty timid guy...and so I was astounded to look out the back window at my parents to see him sliding....no, flying through the air on this toboggan, down a hill of snow..and loving it.   We tried to get him to do it again the next day but it just wasn't the same.... Thanks Dad for playing with my kids outside.  The kids say 'You're the best Grandpa in the whole wide world!" (of course they say that about the other grandpa too;)

On the first day at my parents place, we had a bit of an open house for the Kornelsen family (my mom's side) who hadn't met Rachel yet.  Too bad that Rachel decided to sleep through the whole thing! She's usually still awake at 6pm but all the travelling had tuckered her out.  I am so glad that now many of our extended family members have met Rachel.

Tomorrow I'll add some pictures (and write about) our time with the Funks....

Our MB Trip in Pictures Part 1

Day Three of Chicken Pox - on our way to Manitoba!
Rachel did SO well on the trip.  The older two did GREAT too - We were armed to the tee with new Jungle Jam story cd's, sticker books, TAG readers, and snacks....and calamine lotion, oatmeal for a bath for our stop at the hotel & benadryl.  Unfortunately we had to stay away from McD's and play areas because of our girls being contagious, but we did eat at Chilli's for supper.  (9:30 Regina time) Our kids were so wired after being in the van so long and before I could stop her, Abigail stood up and proudly showed the waitress her chest and said very loudly, "Look, I have chicken pox." 

When we left Regina, highway no.1 was still closed from the Sask border to Wpg, but as we drove, they opened up one section at a time.  There were miles of semis waiting to go.  We heard on the radio that 300 cars were abondoned because of the storm and clearing them took some time.

A few hours after our arrival, the boys left to go to a MONSTER TRUCK SHOW! Thanks to Ravi's brother, they had free seats in a booth.  Ethan's cousin was there with his dad, Grandpa and Daddy too!
Bigfoot wasn't in the show this time but Gravedigger (not pictured) was a big hit.  As expected, the boys were completely enthralled.

Saturday, March 19, 2011

We made it...we're home!

We made it home! Everything went well until near Medicine Hat. Rachel had a really bad spell and it seemed like forever until she pulled out of it...about 45 minutes.  She didn't give us much warning.  All of a sudden she started crying as if to say "something is really not okay with me".  I said to Dave, "I think she wants out of the car seat." and as I took her out, she went stiff and then very limp.  She was not fighting this spell at all this time - she was extremely still, except for her hard breathing.  And her skin was so clammy and cold.  We had to pull the van over and Dave had to crawl into the little space in the back to help with the drugs.  This was exactly what I didn't want to happen on this trip - and yet I think we were both pretty calm.  I continued to hold her towards the end of her spell while Dave drove.  The kids were wining about various things in the beginning, but I noticed later that they were very quiet in the last half of Rachel's spell.  They knew something was wrong but they didn't see Rachel so they didn't really know what was happening. (some of you ask about how the older two do with these spells) Eventually (after 5 doses of fentanyl) she pulled out and she slept the rest of the way. 

It's so good to be in our home with her right now.  (and not in the middle of no-where!) And I am so thankful that we did the trip when we did and that God gave our family some beautiful days to enjoy her and show her off. Thank-you everyone for encouraging and prodding us to do this trip! And for praying for us.

Sunday, March 13, 2011

We're in Manitoba!!

Wow - I can hardly believe we are finally doing something we have dreamed about for so long.  And the trip went so well! All three kids did so well.  And I felt peace the whole way - not once was I anxious about Rachel.  It seemed perfectly naturally and right to be doing this trip right now. Thank-you so much for your prayers. 

We had to stop for night in Regina because the number one was closed from the SK border to Winnipeg.  (didn't sleep much there...) But the next morning as we drove, we heard that the highway was opening one stretch at a time ahead of us. We heard (and saw the evidence) that the roads were terrible the night before.  We are so glad to be here and to watch our kids get reaquainted with their grandparent's homes. There are so many many people we wish we could see and introduce Rachel to - that is quite disappointing for me!! But we know that we need to limit our time to mostly family this time because time is so short.  We are spending roughly three days at each of our parent's. We had hoped to visit my parent's church on Sunday (and the church I grew up in) but we weren't sure if our girls were still contagious or not so we didn't go.  We think the pox is done it's worst already though.  And both girls are doing well! 

Yesterday after we arrived, I unpacked some things and then Dave's mom and sister sent me to bed.  I slept for 12 hours! It was so luxurious.  Ethan also got to do something he has wanted to do for so long - he went to a MONSTER TRUCK SHOW......with Dave and Grandpa and his cousin Isaiah, and Uncle Ravi.

We are stunned too and deeply saddened by the earthquake and tsunami that hit Japan.  We are glad that our Japanese friends and their families are ok. And we pray for those who are suffering.  

Thursday, March 10, 2011

Manitoba Bound?

This morning it was confirmed - Rachel does in fact have chicken pox.  Thankfully, it seems that she has a milder form of it - and maybe this is because of the VZIG.  Thank-you God!! We are giving her an antiviral medication now - 1.5 ml, four times a day.  She's having some trouble getting it down so it takes some patience, but if it helps - it's worth it!  Rachel is doing pretty good.  She is scratching her head - there's quite a few pox there (not much on the rest of body) but still fairly content so far! No fever or shortness of breath.  Because it looks like Rachel will do alright with the pox, (the doctors think that she would show more signs of trouble by now) we are going to brave the trip across the prairies tomorrow! But I have a TON left to do yet.......so we're not sure when we'll leave.  Abigail seems to be doing alright but definetly more itchy than Ethan was at this stage.  It's been a crazy day but we are well.  Thank-you for your prayers!!!!

Rachel was just BEAMING at the nurse and doctors who saw her today.  She really is a beautiful little peanut.  I so wish I had taken pictures but then there is nothing quite like the real thing....

Wednesday, March 9, 2011

On our minds today..

ok - quite the assortment of things on our minds today...but here goes.

We are now getting ready to leave on Friday or Saturday by van, and that is dependent on alot of things going well in the next few days.  I have an appointment tomorrow at "Infectious Disease" in the Children's Hospital with Rachel. If she does have the pox, we will give her something to help her fight the chicken pox - something that is given orally and I am drawing a complete blank right now on what that is called....(probably an antibiotic) And if she does not have the pox, then we will give her another VZIG. As for driving, I actually feel some relief about all being together, come what may.  Rachel has been sleeping ALOT lately and we're not sure if this is her body fighting the pox, or a sign of another spell coming. Lots of unknowns.  We certainly appreciate your prayers. 

Lent begins today! As one of our Collection of Lent readings says - It is "a time for self-denial, soul searching, and spiritual preparation".  And so to participate more fully in this, Dave and I have decided to do some self-denial and to go off desserts for the remainder of Lent, and to not eat after 8pm.  So in case some of you are planning yummy desserts to give us, we would rather save you, and especially us (!!)some disappointment;) Thank-you for treating us so well this last year.  And in case you are looking for a book to read during this time, I highly recommend  "Bread and Wine, Readings for Lent and Easter".  (including writers such as C.S. Lewis, Yancey, Buechner, Nouwen etc...)     

Dave's Grandpa is not doing well - he is back in Hospital, and so our thoughts are with him and Grandma, and the rest of the family today.
Our hearts are also with the Block family as they remember and honor John Block. He is and will be greatly missed.    

A Small and Passing thing

I found this yesterday on Andrew Peterson's latest cd: 

"There peeping among the cloud-wrack above a dark tor high up in the mountains, Sam saw a white star twinkle for a while.  The beauty of it smote his heart, as he looked up out of the forsaken land, and hope returned to him.  For like a shaft, clear and cold, the thought pierced him that in the end the Shadow was only a small and passing thing:  there was light and high beauty forever beyond it's reach."  - J.R.R.Tolkien, Lord of the Rings 

Abigail has Chicken Pox

Day One of Chicken Pox begins again...this time for Abigail, and maybe even for Rachel.  It's hard to say if Rachel has them.  I'll have to bring her to the Children's Hospital today.  If it is not the pox, we'll have to give her another VZIG, which starts the countdown of 28 days in which she is considered contagious again.  It would be great to have all of this out of our way before going to Manitoba.  I just hope this doesn't turn into something ugly.  Please pray for protection for Rachel.  Thanks! 

Tuesday, March 8, 2011

3 month sleepers!

Rachel is now wearing some Carters three month sleepers (ones that have shrunk, I am sure - but Carters also seems to fit a bit smaller and narrower) Yay Rachel! And this is great because they fit her feet better now too.  Still wearing NB diapers though - don't think that will change soon.  I didn't get a chance to weigh her yesterday like I had planned but we will weigh her again in a few weeks at her next RSV vaccination.

Sea Geese on Steep Waves

Yesterday, a dear friend sent me this poem and I thought it was written so eloquently and it fits so well with  what I have been reading in Ann Voskamp's book about Eucharisteo.  It was a breath of encouragement to me after a hard day.  Thank-you again!!

That time
I thought I could not
go any closer to grief
without dying
I went closer,
and I did not die.
Surely God
had His hand in this,
as well as friends.
Still, I was bent,
and my laughter,
as the poet said,
was nowhere to be found.
Then said my friend Daniel(brave even among lions),
"It's not the weight you carry
but how you carry it -
books, bricks, grief -
it's all in the way
you embrace it, balance it, carry it
when you cannot, and would not,
put it down."

So I went practicing.
Have you noticed?
Have you heard the laughter
that comes, now and again,
out of my startled mouth?
How I linger
to admire, admire, admire
the things of this world
that are kind, and maybe
also troubled -
roses in the wind,the sea geese on the steep waves,
a love
to which there is no reply?
- by Mary Oliver

Monday, March 7, 2011

Chicken Pox really BITES

Change of plans again...

Yeah....this chicken pox thing is becoming an even bigger pain.  I had an appointment this afternoon with our Cardiologist, a Palliative Care Doctor, and someone from the Flames House - in order to talk about our trip plans and how we can prepare for it.  It's funny, I thought about how Abigail could be contagious and this is why she shouldn't fly but it took until today for it to dawn on me that Rachel could also be contagious. Well, it turns out that patients who receive the VZIG (immune boost for varicella) are actually considered 'contagious' for up to 28 days afterwards!!! (in contrast, the longest incubation period for the pox is 21 days)  

In other words - if Abigail does not get chicken pox before the 28th, we are safe to go on an airplane on March 28th, AND - if Abigail does get chicken pox, Rachel has to have another VZIG (they don't last long) which means that we would have to wait another 28 days before she is safe to fly...So potentially we are not safe to fly until the end of April.....crazy, huh??

We need a Doctor's note to fly with Rachel - because of the possible complications and because we want to take oxygen on the plane.  (Our Cardiologist highly reccommended us taking oxygen because of the different oxygen pressure - and we don't know how much it should help but it's worth trying) But because she knows about the chicken pox, she can't give us a permission letter.  Of course everyone feels bad about it, but it's just the way it has to be. 

So, now we are left with two options - wait to see what happens with chicken pox, or make the long drive across the prairies with a little girl who has to feed every hour or more and might have spells.  Once we make that decision to travel, then our doctors can get the ball rolling on setting up medical help for us in Winnipeg.  We hate to think that the opportunity to visit Manitoba might be slipping away from us.  It is been important to us on several levels. For one, we feel like we need to do something "normal" as a family.  We have spent so much time waiting for the next spell and yet here she is, nine months old.  God, give us wisdom in our decision making and courage too!

Rachel's oxygen levels were really low today.  It was in the 50's and now I can't remember if she said "50" or "in the 50's".  Certainly a large drop from the high 60's at her last appointment. But I have noticed that she has been sleeping more lately. And that always makes us wonder if she will have another spell soon. 

After this meeting, I walked across the hall to the Lab - Rachel had some blood drawn for Genetics.  I was glad to have that out of the way.  (otherwise we would have had to give a skin sample after death).  After these appointments, I often feel so wiped.  But it might also be that this insomnia thing seems to be making a come back too..blech! There's nothing more frustrating than knowing you should sleep and lying there awake all night.  I think there is more I should write, but I need to get the bedding ready for respite and get my kids off to bed.....

Good night! Oh yes, I received some wonderful emails today.  Thank-you so much!!! I hope to reply tomorrow...   

Sunday, March 6, 2011

Eucharisteo - Thanksgiving

"I have learned how to be content with whatever I have. 
I know how to live on almost nothing or with everything. 
I have learned the secret of living in every situation,
whether it is with a full stomach or empty, with plenty or little."
- The apostle Paul (Phillipians 4:11-12)

I started reading a new book this week.  It's called "One Thousand Gifts" by Ann Voskamp.  I have read about it on quite a few blogs and quite a few people that I highly respect have been impacted by it.  I am sorry to admit that when I first heard about this book, I thought that this wasn't something for me right now - that it wouldn't be relevant - writing a list of a thousand things that I am thankful for?  Is there really time in my life for that?  And even more telling is the thought that flitted through my mind - Can a mother of 6 healthy children really have anything to say to me right now about grief and disappointment?  I know - this was incredibly shortsighted of me......have I still not learned yet not to judge before I hear the whole story?!   
By the way - there are plenty of you out there who happen to have healthy kids, who have ministered deeply to my heart! And you too have experienced the pain and disappointment of this world.  It's just that these days, I feel hungry for books written by someone who can relate to my particular pain.  I hope you understand what I mean....
 But I was walking through Chapters the other day, one of my very faveorite things to do when I have some time to myself...and I found this book sitting on the shelf.  I cracked it open a bit absentmindedly and from the start, I was gripped....and I stood there in the aisle weeping as I read about the tragic accident that happened when she was young and her painful loss. I remembered that friends had given us a gift certificate and I bought it that day.... 

I won't say much more right now - I haven't read too long yet and I think I need to let it sink in first.  But she writes about Eucharisteo (thanksgiving) and how it must be learned and the learning takes practice - and sometimes it is 'hard eucharisteo' - "the holding out of our hands for this moment's bread - when it will hurt" but we must begin even with what seems insignificant...She says "life-changing gratitude does not fasten to a life unless nailed through with one very specific nail at a time." Ann's naming of a thousand gifts is like driving in the nails - "driving out her habits of discontentment and driving in a habit of eucharisteo."

"A nail is driven out by another nail; habit is overcome by habit."  - Erasmus

As I keep reading - (and re-reading certain parts), I am finding that so much of what she says resonates with me and my longing to learn this life-giving eucharisteo too.  If you read it too, let me know what you think of it!  Maybe I will pick up my pen and start hammering away too...

Saturday, March 5, 2011

A tiny bud is growing...

Dave's mom, Val and her little guy left this morning and the house seems so quiet.  The kids really miss their playmate and with the quiet, I am starting to get a little more anxious about all our trip plans.  I spoke with one of our Palliative Care doctors yesterday and she is going to set us up with another Palliative Care doctor in Winnipeg.  So we have someone to talk to if there are questions, spells, a need for more drugs for Rachel etc...She is also going to contact Westjet for us, to inform them of Rachel's situation, and write a letter for us stating that we acknowledge the risk of taking her on the plane and not to go to any heroic measures.  If she will have a spell or even pass away, we will be far away from the medical support we have come to depend on.  And we will have to do without respite for over a week. But, even underneath all my nervous energy, I can also feel a tiny bud of excitement.... 

Here are some more pictures of our time with family this week.
Planting the 'Magic Bean' that Ethan got from Preschool (Jack and the Beanstalk)

Playing Doctor
"Just cleanin' my toes mommy"
Dave even found her hiding between a few of the beds in Sleep Country one time, busy picking out the lint..
What a nice looking bunch!
(and yes, Ethan is eating his foot)
We love you Isaiah! We will miss you!!

Friday, March 4, 2011

More Pictures

Rachel lay like this for a long time, very happy!

Hanging out in my new sweat suit....

Watching funny videos on the computer..

John Deeres and Hot Rock Massages

It has been a good week! Dave's mom, his sister and her son are out from Manitoba to help us with respite this week.  They are leaving tomorrow morning.  I don't know what we would have done without them!! And the kids are having a blast getting to know each other.  This is how the first conversation went between the boys. (in Val's own words)

"Hey, do you know a lot about John Deeres?"
"Yes I DO know a lot about John Deeres!"
They have been playing ever since!

These are some things we have been able to do this week because of our company (besides sleep at night!):
- Hot Stone Massages and Pedicures for both!!! (man, I can not believe I forgot my camera or there would definetly be a picture pasted up here of Dave and his pedicure...he he)  Thanks Val for this fabulous gift!
- Supper at a Restaurant - JUST DAVE AND I!! It's been so long since it has been just the two of us.  I felt more comfortable leaving Rachel with both Mom and Val because there is two people to deal with an emergency and Val is a nurse to boot. 
- I had a relaxing evening with Rachel while everyone went to Stir-Crazy (an indoor play area). 
Thankfully, Ethan's case of chicken pox was not too bad.  He was back at school on Tuesday already.  We are working now on our plans for Manitoba and there are alot of wildcards, chicken pox being one of them.  But I have a flight booked for Thursday (which might get changed to Friday) The plan is for me to fly with Rachel, and Dave will drive with the kids, and hopefully the pox will hit Abigail before or after they drive across the prairies! 

I know that some of you are getting very excited about us coming to Manitoba and I am so sorry to put a damper on that, but our time will be quite limited while we are there.  The kids haven't been to the farms in almost a year and a half.  Plus we will all be quite sleep deprived, taking care of Rachel at night.  And doing much travelling with Rachel is not an option right now.  Not knowing what to expect with chicken pox, heart spells, lack of sleep ect.... it is likely that we will only be able to see a few people, outside of family.  Dave's grandparents have not seen Rachel yet so that will be a very special meeting.  We would really love to see all of you! But we will need to be careful with our time. Thank-you so much for understanding!! We would really appreciate your prayers for us.  I am nervous about a number of things - there are so many things that could go wrong - flying by myself with Rachel is a scary thought for me, and I want to know God's peace.

We are also hurting with our friends, the Blocks.  John Block passed away from cancer and the funeral is on Thursday.  Please pray for them.