Rachel is doing very well.  Dave and I moved into the Flames House with her yesterday....and my parents took the other two to Banff!! (we'll see them again tomorrow morning) We were wondering how Rachel would do here because she has been making strange alot more lately.  (we still think of her as a baby because she is so little but 13 month olds make strange, right?) But when we got back from our dinner and movie (just the two of us!!!) she was hamming it up with the nurses, definetly ok with being here.  Dave and I are having a wonderful time relaxing here too.  Being without the kids was very disorienting at first, kind of stressful to be honest, and it is taking me a bit of time to get used to this but now I am looking forward to the day ahead! We just slept in till 8:30 and now we're going for a walk on this beautifully sunny day. I have so missed being outdoors! There's so much more I would like to write, about my reading lately in particular.  Maybe I will get a chance later....but right now, I'm going on a walk with my husband!! Wooo hooo!!  

ps - for Angela:), and anyone else who wants to know - 'making strange' is not wanting to be held by strangers, or anyone other than his/her parents.  (used to talk about babies) Is there anyone else who didn't know that expression?  Do you have another way to say this? Linguistics was my minor and it's interesting to me to hear about these things!:)    

 Rachel had a short spell at 3:30 am.  (after a long hard cry) We gave her two doses of fentanyl.

The day ended good though. She slept alot, which was wonderful because I spent pretty much the whole morning and afternoon cleaning house (it was really a disaster!) and it felt so good to get things under control again.  Of course, her sleeping also makes me wonder what's in store for tonight.  And Dave is two hours away so I'm really hoping she has a good night.  But she was happy tonight and I'm so glad my visiting friends today could see her in her 'happy time'.  The last time they saw her was at the Flames House a year ago, shortly after she was born. I loved getting to see her family again too!!!

The Weekend

Our main respite worker was unable to come in last night.  She wasn't feeling well and I really hope she is ok today.  Dave and I did our usual.  I took the first shift until 4am and Dave took over from there.  I find 3am - 4am to be the worst stretch, maybe because she tends to have spells around 3am.  But she was ok, just needing to eat in many shifts.  It's almost better not trying to sleep at all so I started reading a book that a friend (Paige Beselt) wrote and I could not stop.  I know I haven't met you Paige, but I already feel like you are a friend:)  It's called "40 Weeks".  (click on the title for info on Amazon) Wow.  It's a novel, about a mother's loss of her baby in miscarriage and her journey through a second pregnancy.  I thought her writing was so honest, so beautifully written.  It really took me back to the time when we lost our first baby and I am already thinking of who else I can share this book with.  Thank-you for keeping me company last night Paige!!  

Then at 5am I went to bed and slept for six hours straight! Dave had to cancel his plans for the day so we can recover. He was also planning to take the kids out to Church Camp tonight but he's going to leave tomorrow morning instead.  I had originally thought of going out for one day but in the end we decided that it would be just too much with Rachel's feeds etc...We have another respite worker coming in for the next couple nights and I'm so excited about having a bit of time to myself at home.  I still have plans for tomorrow though - a very close friend (and her family) coming in tomorrow from Sk! And then on Sunday night, my parents arrive!!!! We are tired now but REST IS COMING!! There sure is alot of pressure on us these days and this rest is coming at a time when we really need it.  We have date plans Laura!:)

Preschool Grad

Ethan graduated from preschool yesterday!! We all got to go and watch a little program. The teachers did a fabulous job - going way above and beyond the call of duty.  I appreciate them so much for the way they have loved our kids.  (and cared so well for us too!) I think there were about 50 kids wearing caps and gowns up on the stage singing songs.  Some of them will be in his kindergarten class starting in mid August.  Ethan had such a good time in preschool and I am going to miss it too.  Not sure how I'm going to keep him busy now....i'ts a good thing kindergarten is only a month and a half away.  Wow.  My little boy is growing up! 


Abigail was so proud of her big brother! And yes, that is a hot wheels tatoo on her arm! Whatever Ethan has, she has to have too:)



Too bad Rachel wasn't looking at the camera in this one.  But she had a good time too...up until when Abigail dropped a cup of apple juice on her, in her car seat!! Then, it was time to go:)

Drug Runs

Rachel was in respiratory distress again this morning at 5:30 am.  Not really a spell but something was going on.  We gave her two doses of fentanyl.  I was getting a bit stressed out about the drugs yesterday.  I know it's not a big deal but I think I was stressed already because of Rachel and my stress needed a focus.  I think I was feeling grumpy (and a bit childish) about our life and how tied to the house I already feel.  The drugs usually get delivered in the late afternoon or evening.  Yesterday, it was going to come in the evening and we both really wanted to be at Ethan's preschool graduation (pictures coming) So I cancelled the drug run, hoping we wouldn't need it.  Now we don't have enough drugs left for a full out spell.  Delivery comes in the evening again. It's kind of a trick making sure we always have enough because we never know when she will need them, but we would rather not pay for them if we don't need them.  Maybe we will have to increase the number of doses we have on hand.  We also have the option of going to get them ourselves, so maybe Dave will have to do that later this morning.  But I'm hoping she won't need them before then. 

12:30 am Spell

Rachel had another spell at 12:30 am last night.  It was an average one, as spells go.  Three doses of fentanyl.  But still stressful. That first minute or so feels like forever, when I can't seem to get the drugs ready and into her, fast enough.  But, amazingly, Rachel is happy this morning.  So glad she doesn't have the kind of memory recall that we do! 

And no, there is no faster method for her body to absorb this drug.  It's just that the spells come on so fast and it takes a bit to wake up ourselves up, fingers are fumbling etc...but I'm sure it feels a ton slower than it actually is!

Some RELIEF!!

I have good news!! Some relief did come but not in the way we expected!  We did some refiguring of our remaining respite hours (from now until August 26) and it is WAY better than David originally thought!!  Instead of the 28 nights that we thought we had to do ourselves, we really only have 19. Yeah, neither of us did well in Math.  Kind of embarassing but I'm sure glad we were wrong.  This is a HUGE relief.  We are going to be at the Flames House for 8 days next week (unless we are bumped for others in a more urgent care situation) And in July we are hoping to make another trip to Manitoba - and have help for the nights there - which takes care of another 8 days.  The question still remains about what our new contract will be in August, and we will get the final answer on that next week.  Yay - I feel SO MUCH BETTER.  Thank-you for praying for us.

about more hours through Rotary or Variety, I am pretty sure our social worker said that we didn't fit the criteria for that.  I forget the reasons so maybe I'll ask about it again. I wonder if it's the same reason why we don't fit Homecare criteria.  (she doesn't need nursing care, dressings etc..) Thanks for the suggestion.


Also, a few of you asked about feeding tubes etc...Basically, all our doctors (and there's alot of them) feel that feeding her orally is still best method for her.  It's a really good question though and we have asked it ourselves in the past.  I can't write much right now, but I'll try again later....!

The Respite Issue

ok, so here's the discouraging stuff....

I am so very tired.  I love my daughter, with a deep loyal love, but this constant feeding is starting to put me over the edge again.  Yesterday in church, I had to heat up a bottle five times in the two hours we were there.  How many one year olds need a bottle that often? We took the night last night too.  And it was awful, feeds every 15 minutes or half hour for my part of it. (up until 4am when Dave took over and he didn't sleep after that either).  I dread these nights.  And there's more coming for us.     

In the past few days, I have felt so discouraged and even anxious about our respite situation. We have been hoping that we could get some more respite hours but it doesn't look too promising at this point.  (we will get the final answer next week.) The thing that really bites is that we have been going over our allotted hours for awhile now because we felt that we needed sleep.  (especially during and after the recent rough patch) And now there are a bunch of nights coming up that we need to do ourselves.  I want to be more positive about this.  I am SO GRATEFUL for the hours we have been given.  I honestly do not know how we could have survived the last year without this help.  But I am exhausted even with what we have been given! This is really hard work! And we have never faced something this demanding before.       

Please keep praying with us for more relief, and if more hours don't come, please pray that God would give us more and more endurance.  I feel like a lousy mother when I am this tired and when there are signs of spells or blueishness, I am so much more easily stressed.  Please pray too that I will be able to accept the situation we are in, and submit myself to God, who loves and cares for us.  And this has been such a battle for me lately.  I don't want to submit.  I don't want to bend.  In my heart, I feel insanely selfish sometimes.  I often fantasize of a time when I can do whatever I want.  Even the idea of running out to the park with the kids sounds like an impossibly wonderful plan - it's one that just doesn't happen here without alot of careful planning.  I am terrified of another difficult summer ahead.  But I also want to be faithful in the journey we are on.  I want to live joyfully, even in these days when much is asked of me.  God, please give us courage to live this way. 
                     

Well, it looks like things didn't materialize the way we thought....and that's just fine with us.  No sign of spells.  I think I am a little afraid to write that things are going well because we know how quickly things can change.  But the good times are just as real to us as the bad - and I want to look back on these times and remember how much JOY this little girl brought us!! Rachel has been SO HAPPY lately.  She has probably laughed harder and smiled more in these past few days than in any other happy period!  She is still eating every half hour or so, but she is eating well.  Last night Dave and I had her on our bed and she was laughing and laughing....just one look from us would get her going.  Ethan set up a monster truck jump in the kitchen where Rachel was sitting and every time he 'jumped the cars', she would burst out laughing - again and again.  And the other day I was on the computer looking through pictures of Rachel, with her in my arms.  She looked at me, put her hand on my cheek and giggled!  And then she looked back at the screen and giggled again.  It was so sweet.  Sometimes I forget that there is a little person in there who really wants to communicate with us, and then there's moments like these that remind us again.  It has been pretty busy here - with lots of good stuff.  There has been some discouraging stuff too (eg. respite situaion), but I don't want to think about that stuff right now.  Thank-you God for this beautiful little girl!

We had to give Rachel two doses of fentanyl at 4am this morning.  She was blue and gasping.  But no full out spells yet.  She still seems congested this morning and a bit bluish, but content.  Our night was short and we are tired.  And so I think this rainy morning suits me just fine today:) 

Rachel has been a very happy girl but she's been sleeping again.  Alot.  She slept about three hours this morning and she's been sleeping for almost the same amount again this afternoon.  And while it is nice to have such a long breather from the feeds, I also know what usually follows.  Please pray for her (and us). Thank-you. 

In the Rustling Grass I Hear Him Pass

I really connected with this song this afternoon and I thought it fit really well with some pictures that Dave took at Nose Hill this morning with the kids.  I was praying for friends this afternoon who are sorrowing and hurting, both physically and in other ways.  Sometimes it seems like there is too much wrong with this world and not enough good.  It is good to have my heart opened to seeing the beauty around me too! And there really is SO much beauty still.  Father God, Thank-you for reminding me that this is Your World.  You will have the last word yet.      

This is my Father's world, and to my listening ears
All nature sings, and round me rings the music of the spheres.
This is my Father's world, the birds their carols raise,
The morning light, the lily white, declare their Maker's praise.
This is my Father's world: I rest me in the thought
Of rocks and trees, of skies and seas;
His hand the wonders wrought.

This is my Father's world. O let me ne'er forget
That though the wrong seems oft so strong, God is the ruler yet.
This is my Father's world: why should my heart be sad?
The Lord is King; let the heavens ring!
God reigns; let the earth be glad!

This is my Father's world: He shines in all that's fair;
In the rustling grass I hear Him pass;
He speaks to me everywhere.
In the rustling grass I hear Him pass;
He speaks to me everywhere.

Just a very quick note to say that our day with Rachel was a good one! Amazingly, she bounced back from this one and she was her happy self again.  wow. I tried to nap this afternoon though and felt too anxious, which makes me a little nervous about the night.  And she is sleeping more than usual again this evening.  I have no idea what this night will bring. But I thank God for the good that was in this day.  Rare treats - like getting to bake muffins with the kids, and reading them new stories from the library....it made me realize how much I have missed them.  ok, Rachel is crying.  Thank-you for the notes!! Good-night.

Broken Halleluiahs

Last night at 10 pm, we kissed Rachel good-night and Dave carried her downstairs to our respite worker.  Then soon after this I heard Dave yelling for me to get the drugs.  At first I couldn't believe it. Really?  She had been so happy today.  She was just hamming it up for our case worker that afternoon, looking so adorable in her candy cane sleeper.  We have videos of her laughing with her daddy.  I thought that all three kids were interacting with each other more than usual today too - they were so happy together.  A spell was the last thing on my mind at the end of this day. But she was in full distress by the time I met them in the kitchen.  We're not sure we have seen her fight one so hard - and this was so incredibly gut-wrenching...her whole body just fighting for a bit of oxygen. Yesterday, it was very hard to believe that she isn't experiencing pain with these - her cry at the start was so desperate, so full of pain.


But after awhile, she pulled out of it yet again.  And honestly, I had almost wished for her that this could be it.  I would rather that she died like that after a good day, then to go through an agonizing two weeks again.  But I guess it wasn't her time.  Later, after alot of tears, Dave and I were talking and he said, "Why does God keep pulling her out of these? Why let her recover again and again?" Medically speaking, this is supposed to be amazing.  But I can't say that this feels amazing.  I desperately want her to be free from these. Sometimes it is so hard for us to understand why God is not taking her yet. 


Ethan and Abigail were sleeping when it happened.  But the rest of the night was miserable.  They each got up a handful of times at different times for different reasons.  Nightmares, having to pee, needing water, needing us to pray for them.  And I was so restless to begin with, because of Rachel.  And I feel disappointed, almost cheated, that a good day can be gone, just like that - and become something else. The thought even crossed my mind that maybe we were under some kind of attack, that we need to pray for God's protection in our house. 


Several days ago, I was driving home from the gym and I heard Leonard Cohen's line on the radio, "Love is not a victory march.  It's a cold and it's a broken halleluiah." And inside I said, "Yes, that's it. That's how this feels."  To borrow a line from a friend, it does seem like we will reach heaven, not in some triumphant fashion, but limping, stumbling our way.  The important thing is that God will get us there.  He will carry us. 
               

Next Year's Contract

Today is the Rachel's third really good day! Her feeds are better.  She has even done a few 45 minute stretches before we had to feed her.  She is having good naps and she is more content.  She is holding her head.  We are all really enjoying her.  The break from the constant feeds is so nice. (ha! less constant)

We had a meeting with our case worker this afternoon to discuss next year's contract.  (beginning August 26) Yeah, amazing right?  The last time she was in our house, we thought this respite thing would just be temporary and now, months later, we are asking for more hours.  Overall, we felt good about the meeting.  We have a very understanding case worker and we were very glad that we had charted a typical day and night for Rachel.  The kind of sad news was that we already have the maximum amount of hours they usually give families.  (and we weren't aware of that) But she said that we should first find out if we are covered for Home Care.  If not, we can go back to her and she will work to get us some more hours.  (starting before Aug.26) In this case, it is very unlikely that we would get the amount we want.  But if we can get both Home Care and FSCD hours, we might.  Rachel is an unusual case though and we're not sure if she will fit the criteria for home care.  We'll find out next week... 

Rachel is really back to her spunky little self today.  I know she is happy when she crosses her tiny little ankles and pumps her long slender legs up and down.  And when she bobs her body up and down in her chair.  And when she gives us BIG toothless grins.  I feel like we have reached the light at the end of a long dark tunnel.  Her feeds have been better too.  She is able to drink a little more at a time now.  I am trying to just enjoy her right now and not think about the next difficult stretch that might come.  These last few weeks have been so tough and I think I am still in a bit of a fog because of it.  Hoping to come out of it a bit more today.  I still feel so weak, so unable to carry the demands of this journey alone. God we look to you today for Grace, for your mercy.
  

What Rachel's Night looks like on Paper

Our respite worker continued the feeding log for the night.  Rachel ate 8 times. (between 9:30 pm and 7:30am.)  Most times it took 20 minutes and one feeding time was stretched out over 45 minutes.  (I have no doubts this is true - her feeds can sometimes be really difficult, often after a nap).  Her log doesn't tell me when Rachel slept.  But I can imagine, because we have done nights ourselves, that last night was her usual interruped kind of sleep.

Rachel's feeds on a Typical Day

ok...I added up the times I wrote down today....By 6pm tonight - we spent 3 hours and five minutes just feeding Rachel.  (since 7:30am this morning).  We fed her 15 times in the course of the day and this is all in 10-15 minute segments. It doesn't take into account all the time we watch her for signs of hunger, or hold her because she is unhappy, etc..It doesn't take into account the added stress of watching for spells, or wondering why her cry sounds different or not.   

The interesting thing for me about this amount was that this wasn't even a bad day.

Hanging out With Grandpa & Daddy

...at Elbow Falls!!!! I have to be honest, seeing these pictures sure makes me feel jealous right now....this place is so beautiful! I spent the day feeding Rachel again and I thought she almost had another spell this afternoon.  (thanks to some advice we received from another parent, I recorded the times so we can show our case worker what a day with Rachel looks like)  But I'm so glad for them that they had a great time!  

Our Little Girl is Back!

Hard Day

After writing the last post yesterday, I had a very difficult afternoon with Rachel.  She still seems hungry but she has to take many breaks in one feed. This stopping and starting kind of eating is so unbelievably wearing.  I think I had her bottle in my hand for most of the day.  But I think what made the day so very hard was that I had hopes for the afternoon, a nap, some exercise? And she only slept for 15 minutes, just enough to get me up from an 'almost sleep'.  I didn't get anything done. And it just snowballed from there, into a frustration about the whole year.  There is too much about this life that drives me crazy sometimes.  Yesterday, I longed for normal busy toddler stuff to complain about.  By the time Dave and his dad and the kids made it home, I was about to go over the edge.  Dave took one look at me and sent me out of the house. I went to the store for some things and I took my time doing it. Oh, blessed freedom!! 

Today I am waaaaay better after a full nights sleep and a half hour outside pulling weeks in the sunshine!! But I still feel like it might not take much to bowl me over again. We have another meeting next Friday afternoon with our case worker to discuss more hours for respite.  We really feel that we need more - not just for nights but also for one evening a week so that we can do something fun with the other two kids. So often it's Dave or myself taking the kids out, and so rarely do we get to do something together.  We probably wouldn't go far from the house - but anything would be wonderful. Please pray that our case worker will be favorable to giving us more hours. (And for us, for strength and perserverance!!) Thank-you!

Grandpa Funk is Here!!

We both got Rachel giggling yesterday, at different times.  What a BEAUTIFUL sound!  She does seem a bit more content, however feeding is a constant job again.  She seems so hungry but she can only get a few sucks out of the bottle and then she stops for a few minutes and then tries again. She seems very tired too - and she often needs to lie in in her bed and chill. Her naps are short though. Last night, because of an oversight on my part (I forgot to confirm the weekend with our respite worker), we ended up doing the night ourselves.  oh....my poor tired brain....I had forgotten how hard the nights can be with her! 

Dave's dad is out this weekend!!! This is pretty special, because usually the grandmas get to come out to help and the grandpas have to stay home.  He is getting paid to pick up a semi in Red Deer.  So Dave and the kids are picking up Grandpa from the airport right now and driving out there together.  This gives me the whole afternoon with just Rachel. Hoping to get some more sleep here.....and maybe do the dishes??      

Some of the comments made on the blog recently have really stuck in my mind lately.  One that comes to mind right now is "I loved living with (my husband) but I hated dying with him."  I have been thinking that here too - life with Rachel when things are going well, is a beautiful thing - but we sure do hate dying with her. I have sometimes thought too that I can't remember a time when things were 'as they should be.'  There are so many things that I think fit in that category of 'as they should be' that I need to let go of, at least for now.  Oh, what a very tough road this is, to watch our loved ones hurt, to have our lives turned upside down, to know that nothing will ever be the same again, and not see an end in sight to the season of 'dying'.  God, give us all strength. Thank-you again for sharing your heart with me.

On another note....I am trying to do some Bible memorization, using an idea from a friend. I wrote a verse down on a whiteboard and as I pass by it, I try to read it.  Once I know it well (and there is no time-frame, and I think that's the key), I will take it down and put up another one.  Here's the first one...

I think I chose this passage because I know that when I feel weak and exhausted by the constant feeding(and overwelmed by fear by what Rachel's death will be like), I am susceptible to believing lies about who God is and what He is doing (or not doing for us), lies about who I am, and how God sees me.  I want my mind and heart to be ruled by what is true. I am not getting around to reading much of the Bible these days and I'm hoping this helps get God's words into my mind...     

No big change here.  Rachel is still eating small amounts.  She is making her 'talking noises' again.  She does seem a bit stronger, and this is most noticeable in her cry.  Her cry is really stressing me out though this morning. My heart just clenches to hear it.  And she is not happy or settling easy.  And so we are not able to relax much either.  We were both struggling with disappointment yesterday - we thought that relief was around the corner for her (and us). I wrote a bit of how I felt guilty about feeling that way.  Dave did some personal journaling yesterday about that too.  I think we have moved past that today, but these ups and downs have been excruciatingly hard.  We feel so worn. I love that Dave is home this week, but I can't help thinking how very different our holidays could be. 

I have received several very encouraging emails in the past few days.  (and comments too!) Thank-you so much.  Your words have been life-giving and so encouraging to me! 

Our Anniversary Date

This was the first year that we didn't pose for a picture together.  We weren't feeling up to talking to more strangers about Rachel today so we didn't ask someone to take one for us. We already had to answer the 'how old is she?' question as we came in to the restaurant...so this year we just took some shots with each of us holding her.  Who would have thought we would celebrate two anniversaries with Rachel??!!  Although Rachel hasn't smiled for me yet (Dave got one - i'm so jealous!), she sure looked happy in the pictures we took.  ok...and now here's a great picture...caution - it may be disturbing for some viewers...he he....

Isn't he soooo handsome?  Oh I would marry him again in a heartbeat!!

ok, just to be fair...here's a not so flattering one of me too.  This is us driving to our friend's house to drop off the kids...still both feeling under the weather but we did manage to tidy ourselves up a bit:)  Went to Montana's for soup and salad. 

Pictures

...the picture of us tired, sickies is coming later;)

First of all, THANK YOU to all of you who gave money towards the Compassion Medical Response Fund at Rachel's party!!! It made us so glad to know that other children will benefit from Rachel's life too!  We are quite serious when we say that giving to this fund, is also a gift to us!!  There were also some other gifts that we enjoyed opening and here are just a few of them....

The kids with one of the flower pots we got at Rachel's party and this gorgeous home-made picture frame that our friend (and our kids babysitter) spent many hours making.

There's a story behind this giraffe. Our respite worker has a game on her phone, a giraffe that likes having it's tummy rubbed.  (it makes a sound and shows hearts) Rachel loves touching the screen to make it do this.  This was Rachel's birthday present from her.    

I went digging in Abigail's old clothes the other day and came up with a few more sleepers that Rachel can wear now. I never thought I would ever use these ones!

David and the kids making up their good-night stories - something about animals biting off each other's legs and butts...?? (Ethan's idea)

Nine Years!!

Rachel seems to have rallied yet again.  She drank 120mls last night (still roughly half of her 'normal' feed).  She is still quite weak, no smiles yet but her eyes look much brighter.  We tried the dropper idea for awhile but she kept pushing it away.  And Rachel has never been the indecisive kind, so back to the bottle we went.

It is Dave and my 9th year anniversary today!! Dave made waffles for me this morning and put them on a beautiful, new set of dishes!!!  Ethan was so funny last night.  After repeatedly telling him not to tell mommy the secret, he said...'ok, ok,ok!!(in exasperation)...but mommy...(whispering now)..can I have some of the waffles too?" oh that boy cracks us up!  Then after our waffles, Abigail started crying because she hadn't been to our wedding and she wanted to know what it was like. So, we re-enacted it in the living room. (the very short version).  Abigail was the flower girl and Ethan was the ring bearer.  That was quite fun.  

We are taking turns having naps today.  Both of us feeling under the weather.  I have had some bad vertigo issues for the past three days.  My mom gets this alot, usually in spring.  (inner ear problem) so I'm wondering if that's it.  It's driving me a bit crazy actually.  My eyes are closed and I'm lying still and it still feels like the whole room is spinning.  Dave might have the flu - blech! I have this scrapbook that docouments what we did each anniversary day.  This year, I may just put the title "in good and bad" and take a picture of us looking really haggard with thermometers hanging out of our mouths or something. Forget trying to dress up this year - this is us, world.  We love each other.  And this love is good! The real stuff.  I am so blessed. We're hoping to go out for supper tonight though!! Friends are taking our two older kids for the evening!