Just Sittin' Pretty

Day Three of Chicken Pox

Ethan woke a few times because he was really itchy but it looks like this is starting to slow down. I don't think I see any new ones that popped up through the night.  He says his throat bothers him though.  No sign on Abigail yet and it is pretty likely that we will have to wait a few weeks before they show up on her. 

There's lots on my head that you can't see.....
Overall, not so bad though....!

I have had a hard time sleeping again, mostly because I am feeling so anxious about Rachel and this whole chicken pox thing.  I so wish I had immunized the kids now and I know there's no point even thinking about it because it is too late, but I still think and worry and waste time on regret.  Good news though! Dave's mom and sister (and her little boy) are coming out to help us this week!! They are leaving tomorrow morning from Manitoba.  Yay!


I'm thinking of my brother Kelsey alot this morning.  He has corrective dental surgery at 11:40am that we are all concerned about.  He had some wisdom teeth extracted in Mexico recently, as well as some other things done (it was way cheaper than having all this done here) and it turns out that they weren't able to close the holes properly and the jaw is sticking out on both sides.  So now the dentist here has to file away both sides and then attempt to cover it.  The specialist here says he has never seen such a bad case and there are risks of nerve damage to his tongue (1 in 15 chance of his whole tongue losing feeling!) God, give courage and peace.  God, I ask for protection too. Help this dentist to correct this problem without causing others. 

(Sun morning) update on Kelsey - the Dentist said the surgery went very well!! Yay! He told him to take lots of drugs and watch Rambo movies.  Kelsey says it doesn't feel too badly though.  And he has a good friend to help him through it;)

Day Two of Chicken Pox

I feel pretty tired so this is going to be brief.  We are hanging in there.  Ethan is complaining more about itchiness and he is covered in spots.  I just gave him an oatmeal bath and Dave spread calamine lotion on him.  I have realized that we need to be careful about how we talk about our concerns for Rachel around him.  Yesterday he said to me, with tears in his eyes and a trembling lip, "now I won't get to kiss Rachel ever again.  never ever again.."  I let him know right away that this was only temporary, until he got better.  And that if Rachel gets sick, it will not be his fault.  But he feels things so deeply.  He is a very compassionate little boy.     


Rachel had an ok day. She doesn't seem as active as she has been, but she is content.  Dave took her to the Children's Hospital this afternoon to get a varicella zoster immune globulin (the name of what Rachel was almost given yesterday).  Poor girl had to have two needle pokes at the same time, in both legs.  (she was too little to have all of it given in one leg) One of the Doctors from "Infectious Disease" called me this morning, saying that he was re-thinking his opinion.  He said that she doesn't normally fit the criteria of people who get this (usually given to patients who have compromised immune systems) but after learning more about Rachel's situation, and talking with our regular Cardiologist who was now back from holidays, he decided we should go ahead with giving her this immune boost.   I told the Physician from Infectious Disease that that the emerg. doctor had talked about risks associated with the VZIG and he said there weren't any.  That really confused me because I felt that I had been fairly clear in asking about this.  (maybe he thought I was asking about the risks of chicken pox?) But whatever the case, I'm glad we could do this - it makes me feel better that maybe we did something to reduce the seriousness of an infection. But so much is out of our hands and I am trying hard not to worry about all these things.  I am trying to leave my fears in God's hands tonight.  And I have heard so many sad stories tonight. Sometimes it feels like there can be no end to what can go wrong and no bottom to our fears and sadness, but like a fellow blogger just wrote recently, "there is a bottom and it is resting in the hands of the Lord."  And the Lord is full of tender mercy towards us.  (James 5:11)


Thank-you for your notes and for praying.  I have been blessed today.  I thank God for the new friend who arranged for meals to be brought to our house next week.  I thank God for my friend who came over to watch the kids while I lay down for a rest and then baked cookies and made soup and cleaned my house.  And for the other friends who have offered meals and other help. I thank God for His provisions today, for strength, and for the reminders from others that He will carry us through this.  

Chicken Pox

Yesterday, as I was dressing Ethan for preschool, I noticed that he was covered with little red dots. Chicken Pox? Oh yeah, I remember....that was the one immunization that we declined.  At that point, Ethan is just itching to go to school (ha! no pun intended) - he knows they are going to learn more about outer space - and he says something about making space helmets.  And I have to tell him that he needs to stay home.  Poor guy, he is so despondent.  He tells me "Don't worry mommy. it will be fine.  I can go." He wasn't itchy yet so he doesn't understand why little red dots on his chest needs to keep him home and away from other kids. 

Almost immediately, my thoughts go to Rachel.  When we made this decision not to immunize, we didn't have a little girl with so many problems.  Would we have made a different decision? I'm not sure.  Does it matter now?  No. The question now is - will Rachel get this?  And if yes, how will it affect her?  I can't bear thinking of how irritating this might be to her and she really doesn't need more strain on her heart if there are complications.  God, have mercy on her!!

We spoke with a nurse at the Flames House and called Health Links - I think this was the first time that Health Links has ever been helpful - and then I took Ethan to the Children's Hospital.  As soon as I showed the admitting nurse Ethan's chest, we were isolated.  Any other child they would have sent home but because of our situation, we stayed to get a doctor's confirmation as well as to discuss a possible way to help boost Rachel's immune system temporarily.  We spent the whole afternoon in waiting in our little room - I realized quickly that I had not brought along enough toys or snacks - but Ethan did really well.  I spoke with the Palliative Care Doctor on call.  The emerg. doctor also consulted with Cardiology and the Infectious Disease Department. In the end, it was decided that the possible risks associated with giving her this blood product (which I completely forget the name for) probably would not outweigh the benefits.  If Rachel does show symptoms of chicken pox, we should bring her in then.

We soon realized other problems - it really felt like someone had just tipped over the domino that was going to send the others crashing.  Our main respite worker has never had chicken pox, and so we are now without respite. (except for two nights on the weekend)  And no respite means no sleep. I feel bad telling her that she shouldn't come but I really don't want her to be affected by this - they have enough to deal with right now. 

We had been planning on going to the Flames House for a week, starting on Monday.  We have been going over our allotted respite hours and we could really have used the break.  But that is cancelled now. And what really makes us sad is that this adds more uncertainty and questions about our trip to Manitoba.  I hate that.  It's not just about the disappointment of changed plans - it's that we have lived with so much uncertainty for a year and a half. (And the lack of sleep etc..there are so many ways this affects both Dave and me) I'm not sure I even have the words right now to explain how this feels. 

ok the kids are up and Ethan is ITCHY....lots more red dots. Time for breakfast. 
Please pray for strength for us! We could really use some today. Thank-you.

Big News in a Small Package

A little envelope came in the mail yesterday...from Malta where Dave's sister and brother in law are living right now.  To celebrate their ten year anniversary, they have invited the family (each at our own convienience to come visit them either in Malta or in Germany!)  Isn't that amazing?!! What an incredible gift!!! We are so excited about getting to see some of their stomping ground.  We don't know when the right time will be yet - but it is so wonderful to have something like this to look forward to.  We have already told the kids.  We showed them on a map where we live and the places where their aunt and uncle live....and Ethan, after whooping with joy and running around the house - stopped in his tracks and with a bit of a worried look in his eyes, said, "But...but I don't speak German." So, Dave taught them a few words this morning.  Now they feel a little more prepared;)

Thank-you Paul and Jen!! This is SO EXCITING!!!!! We are really looking forward to coming out!

Growth Spurt Time?

Rachel has been eating alot lately.  She still continues to eat every hour (on average) but the amounts are higher than usual. Sometimes she downs 40-50 mls at once.  She seems stronger, which enables her to eat longer before she tires out - and getting more fluids in turn helps her to be stonger.  It was a very tough night for respite though.  Rachel needed to feed every hour and sometimes twice an hour.  But, overall she has been much more content lately.  Ethan and Abigail are really enjoying her too.   

I have yet to get a video of her rolling from her tummy to her back. Each time I waited for a long time and then (of course!) she decided to roll just after I stopped the camera.  But I'll keep trying.  It is so wonderful to see her this strong and happy - and yes, my mama heart is very proud.

Thank-you for all your notes!

First Tummy to Back roll!

I was doing a bit of tummy time with Rachel this morning - and she just rolled from her tummy to her back 5 times in a row!!! She was getting pretty irritated with me by the end but I just wanted to watch her do it again and again and again....She was really holding her head up nicely too.  I'm going to try and get a better video later after I have fed her again.   

Rachel's Nine Month Birthday!

Wow.  Rachel is really nine months old.  She has now lived outside my womb as long as she has been in it.  Incredible..... 

My morning started at 7 am and by 10 am, I had already fed her 6 times.  I am already feeling the impact of my mom being gone.  David very generously took Rachel the whole night.  He only had one hour sleep before 7am.  He slept three hours yesterday in preparation and then slept this morning as well. (between you and me though, I think he was pretty happy about having an excuse to stay up and play computer games...he he...oh he is so going to get me for that one!) Honestly, it was really kind of him - I am so much grumpier when I have to do it.  And I am sleeping so much better these days! Later on in the morning, we had a visit from some dear friends who now live in Manitoba, and we took it easy for the rest of the day.  Here's Rachel (a bit unhappy with me for not getting her some milk!) with her new sock monkey from our friends.

I think Rachel has grown a bit more.  This blue sleeper is one of Abigail's old ones - I think it's a 3 month and it's just a tad big.  Dave thinks her cheeks have filled out a bit more too.  It's amazing that she could have such a wonderful few weeks just after her worst heart spells.   


Want to know something interesting?  At least, I think it is.  I had always noticed that Rachel's second toe often overlaps her third toe.  It seems like she and her cousin Isaiah have the same thing.  Isaiah just had surgery to correct his feet.  The Doctor released the tendon of the third toe.  Poor little guy isn't suppossed to run or jump for weeks.  I often wondered if Rachel's toes were doing something similar to her fingers (they have funny bends in them) but now I'm pretty sure it's not related.   I think it's interesting that she and her cousin have this in common - too bad they won't be able to commiserate someday;)  Although Isaiah will likely not remember his surgery...
Mostly Whatnot

And here's a pic of Rachel's toes. (yeah...it's funny how it takes seeing a picture to remind me that it's time to cut my kids nails....)
 

And here are some pictures Dave took while out on Nose Hill by himself this afternoon. You would hardly believe this is in Calgary.  Isn't God's creation amazing??!!

Nice Cuddly Porcupine

Lichen on Tree (about the size of a thumbnail)

Mathew 7:24-25

Anyone who listens to my teaching and obeys me is wise, like a person who builds a house on solid rock.  Though the rain comes in torrents and the floodwaters rise and the winds beat against that house, it won't collapse, because it is built on rock.
 - Jesus

Sparkly

Rachel is so very sparkly this morning....twirling her hands and smiling with big toothless gums.  She is also urgently talking to me about something - and just eagerly waiting for my glance of encouragement to continue. Sometimes I wonder - will we ever hear her speak?  It seems so impossible now - she doesn't make recognizable sounds - it's more like a vibration in the throat, similar to a cry....but oh, I would love to hear her say daddy or mommy.  ok, now its a cry.  "30 mls of milk coming up dear!!" 

The Sun Room

My favorite room at the Flames House is the Sun Room.  In the first few weeks of Rachel's life - we spent alot of time there, holding Rachel and allowing the sunshine to cheer and comfort our hearts.  Dave took some pictures there during our last visit and there certainly wasn't much sun to speak of...but I love these shots because they remind me of some special times we have had there already.  I also love these pictures because they remind me of times of past reflections and communion with God - spaces in which I was quiet enough to hear God speak.  There haven't been enough times like this lately and I long for that awareness of His presence again.  My thoughts have been too busy, too noisy...and so I am thankful for these small reminders that He is Here....pursuing me, inviting me to sit at His feet again...

These are the promises I just read...

"Draw close to God, and God will draw close to you." - James 4:8

"The words I have spoken to you are Spirit and Life." John 6:63

"The law of the LORD is perfect, reviving the soul.
The decrees of the LORD are trustworthy, making wise the simple.
The commandments of the LORD are right, giving insight to life.
Reverence for the LORD is pure, lasting forever.
The laws of the LORD are true, each one is fair.
They are more desirable than gold, even the finest gold.
They are sweeter than honey, even honey dripping from the comb.
They are a warning to those who hear them; there is great reward for those who obey them"
-Psalm 19:7-11

Today I know that I have been out of practice in listening to God...I know that I have been worshiping other idols...and I have been awkard with silence and when the rare opportunity comes, I rush to fill it with other things - and usually it's the computer.  I find it amazingly hard to be still.  But I can hear you ask (because I often ask this question too... )"What about the many times when I feel like I have drawn close, only to be met with silence? Why is God so hard to hear?"  

Dave wrote an article recently that I felt like I could connect with...and he gave his permission for me to share it. Ok, here it is - we put it up on David's blog. 
 

My New Bathrobe

These pictures were taken after her bath a few days ago.  Rachel says, "This bathrobe from my auntie Evonne is sooooo soft."  Oh, how I wish you could see how playful and mischevious this little girl can be.  I see so much of my older kids in her.  Have I written here about her little joke with Daddy?  Daddy puts his nose to the side of her mouth and she moves her head so she can put his nose in her mouth....then both of them smile and laugh - and no-one gets quite the same reaction as Daddy does!  Rachel also LOVES to be swung (as if in a swing) in our arms.  She will cry if you stop.  And she loves getting her feet and legs massaged.  She will wiggle her body a little up and down when she is really happy - and she will be very busy moving her mouth as if to 'talk'.  And these days she is so quick to smile - as if you and her have this little secret joke.  I am so in love. 

But boy, are the feedings constant....and so very demanding.  I am so very tired of those little bottles already and how they keep leaking milk all over the place...My mom has said several times that feeding her really is a full time job.  Even though we know how things are, a very common line in our house is.."what? I just fed her 15 minutes ago." It is amazing how much I have been able to get done without this constant interruption.   

Having my mom here has been so marvelous.  I am seriously dreading Monday morning when she leaves to go back to Manitoba.  It has been different than other times in that I am now more hesitant to leave Rachel with her so I have only gone out on my own one time so far.  (the morphine was easier to administer than her new drug and I just feel nervous being away from her) But I have been able to do so many things that I haven't done in the past year and a half.  Let's see....I made meatballs for the freezer, canned soup, made banana bread and muffins, and rhubarb juice, made meat pies, organized some of the kids closet and put aside some baby stuff to give away.  It felt SO GOOD to do some of these things again.  And a bit sad to give away things that we will likely never use again. I put up some pictures on the wall of our three kids and last night, suddenly it felt like something was caught in my throat as I looked at our three beautiful children and thought about what it might be like to look at those pictures one day after Rachel is gone.  But most of the time, these thoughts do not cross my mind.  I mostly feel a huge amount of gratitude for the gift of knowing all three of these little people.              

Recent pictures

Here are some recent pictures of Rachel (taken from my mom's camera) as well as one of the kids creation of "Mr. One-eyed Bandit" at a nearby park.  (He has only half a pair of sunglasses) They went back a day later and sadly, someone had kicked it down:(

Happy Valentine's Day!

It is SO good to have my mom here.  Dave and I took advantage of her help this afternoon to finish up our bed shopping. Rachel thought the Temperpedic "Cloud" was so dreamy - the little princess has expensive taste!  But we finally decided on a King size memory foam (different brand) at a wonderful price. (If you want to buy a bed, February is apparently the month to do it!) We're getting it in a few weeks and if we don't like it within two months, we can return it for full price.  We were deciding between this and two twin XL beds but we were stalling a bit on it because most places sell this size as a final sale.  (I know, that's odd isn't it?) Anyway, I am really looking forward to trying our new bed out!!!! We were getting a bit tired of having this decision hanging over our head. 

Rachel is doing really well.  Lots of smiles and laughs and 'talking'.  In fact, we don't know if we have ever seen her this happy. She is so beautiful. And I am so glad that my mom gets to enjoy her like this.  At Christmas, Rachel had so very few smiles and seemed very weak.

Mom helped the kids decorate a heart cake this afternoon. And earlier this morning, she had help from the kids to clean up the kitchen...and this led to some wall washing too!  (see pic)

Call from Genetics

I just received a call from Genetics, concerning a test result that we were waiting for.  I held my breath for a bit and then she told me that the results were not in yet.  The test is fairly new, each individual blood sample is looked at and studied on a case by case basis, and there is a back log and so we are likely looking at it taking at least another 4 months or more.  But she also noticed on our chart that they require another blood sample from Rachel in order to get a more reliable result.  This test analyzes the genes (on chromosones) to see if there are any additions and deletions that don't show up on the regular chromosone test.  If they see a difference, they need another blood sample to compare with their findings - not sure if I really understood this well enough but the upshot of it is - Rachel needs another poke.  I am glad I found this out because we probably would have been disappointed if we only got partial results and missed the opportunity to know more. There are other ways to get samples post-death but I am quite there will be alot of other things on our mind then.

Later on (after this first call) I spoke with the Geneticist we first spoke to during my pregnancy.  She said that these tests may tell us if Dave and I (and also Ethan and Abigail) have a predisposition to having another child with these problems.  If results show differences in genetic structure, they may ask Dave and I to give blood samples as well. 

In case you are interested, there are studies going on about how heterotaxy happens - from a medical point of view.  Here's one article that is kind of interesting. When two rights make a wrong
This just makes me marvel again at how intricate our designs are - WOW God!!

Beautiful blessed sleep...

We are all doing so much better.  Our stay at the Flames House was so very good for us.  What would we do without this place or without night respite at home?  It's hard to imagine.  I slept last night - and it was the deep kind..It has been such a long time since I have known sleep like this and it was so very wonderful.  Rachel is doing very well.  She is eating constantly though so this keeps me very busy during the day. And she has a bit of a cold from our other kids.  Our respite worker says she continues to eat every hour at night.  I am planning to start journaling a little more before bed - the old fashioned way with pen and paper.  This way I can dump and spew my thoughts out - without having to edit what I write.  And this might help with the insomnia thing.  So I may not be on here as often but we will certainly continue to post updates on Rachel when we can.  Thank-you so much for your prayers this last week!  I have been blessed by your thoughts and advice as well! You have certainly helped us in our decision making....now that my head is much clearer, we will hopefully get some of these things done: D

And my mom is coming out on Friday and staying for 8 days!!! I can hardly wait...

Another spell

Rachel had another spell at 4:45 am this morning.  It lasted roughly 30 min. The good news is that the fentanyl seemed to act much faster than the morphene.  Shortly after the first dose, her face relaxed and lost some of the intensity.  (we gave her three doses in total) I so wish it could do even more, although I know that her breathing likely sounds far worse than it really feels for her.  I am glad we were at the Flames House for this one.  It was nice to have a nurse beside me helping with the syringes - it's a bit more 'fiddly' than the morphene was.  This way, I could just focus on holding her.  Dave came out to be with us for a several hours this morning.  I'm so thankful for our neighbor who came over to watch our kids! Thanks John. 

This is the first time she has had two intense spells this close together.  I am going home to pick up my family this morning and we are staying one more night.  The good news is that I slept a four hour stretch yesterday!! And then surprisingly, I was able to sleep another hour and a half this morning.  I feel a heavy sadness again this morning but I am also feeling so much better mentally - more able to function than I did a few days ago. 

Rachel is giving out smiles this morning.  The area around her eyes is quite red - common for her after spells.  But otherwise, she seems fine.  I had a good snuggle with her this morning.

Last night as I brought her out to the nurses, she was asleep in my arms with her little fists up by her face and she looked so much she did in her 3D ultrasound pictures.... 

Rachel's Spell and Other Things

wow - thank-you for your notes.  Rachel is doing just fine. (She bounced back amazingly well) I do not feel fine though.  Yesterday I managed finally to fall asleep for a nap in the afternoon and I woke up a short time later, to a 'flurry of decision making' and most of it was going on around me.  Which was incredibly aggravating and frustrating to me.... but at the same time, I felt a bit relieved because I was so incapable of making them myself.  Dave took me to my 'Hospital' last night...meaning the Flames House.  Rachel and I have been here since supper last night. The hopes were that I could relax more and be able to finally sleep. I decided to try a herbal sleep aid one more time....I don't know why I have been so resistant to drugs...silly stubborness I guess...but again, it took me hours to get into a restless sleep.  

I am starting to have anxious spells.  I guess I am feeling like a bit of a mess right now.  The nights before Rachel's spells I was having terrible dreams.  One night I was certain that I could hear Patricia (our respite) screaming downstairs and I ran to the door expecting her to run up and tell us Rachel was dead.  I have dreamt that Rachel died in my arms on the airplane and the people around me didn't know what to do with me.  (We have been talking of taking Rachel to MB - I would fly with her and Dave would drive with the older two.)  The reality is that I have been so excited about the possibility of taking Rachel to MB - I had just told three of my friends about it the day before Rachel's spell.  I know in my head that the likelihood of this happening is so small.  But in my sleep, the fear takes over. 

ok - so what happened the night before last with Rachel?  I had just gotten to sleep - maybe half an hour into sleep - when Patricia brought Rachel upstairs.  Rachel had just woken up with a spell.  It lasted at least half an hour.  And there are no words to describe our agony in watching her go through these.  The morphine didn't seem to be working.  We wondered if this was it.  I was even wording her death announcement in my head - unbelievable - even in a situation like this - I am planning...Our doctor told us later that she felt too that this might be the end.  She thought she might be coming to our home to confirm a death. 

Dave was wonderful.  He talked to Rachel the whole time to let her hear his voice.  I was busy trying to 'do' things - get her into the right position etc...We are a team that way.  Sometimes I want him to be like me and think of details like I do...but I know we both love her deeply.  

ok - now i'm crying...and I think I need to cry.  I haven't really cried since that night.  

I even called my mom at 2:45am....and I knew she needed her sleep - she had just had a crazy trip back from the States where they had done MDS work - and had to spend 11 hours in the van waiting out a storm...But I needed her.

And suddenly Rachel's ragged gasping changed, almost immediately her breathing regulated.  

Of course, how to sleep after something like that?

I am so worn.  

Thank-you - Thank-you for caring and for praying for us.

Rachel really is doing fine - the little trooper.  We were amazed at the smiles we got the next day - and this usually doesn't happen for a long time after a spell.

oh yes, we are going to try a new drug called fentanyl. (instead of the morphene) It is suppossed to act faster.  The drug itself is not new - it is used for pain and patients who have pain and breathing difficulties say that it helps for both.  The method of delivery is fairly new - it is a tiny drop in the nose.  We are going to get some training today on that.

Also, because of my need for rest (for mind and body)  - I am trying to spend far less time on the computer so if I am not answering emails etc...this is why.  I know you understand. 

Three empty sryringes

Heartbreaking Night

Last night between 2:15 and 2:30 am Rachel had another spell and it was a horrible one.  Our Palliative Care doctor was on her way to our house when she finally pulled out of it.  We thought this might be it. I'll write more later.

Insomnia

Rachel had a great day.  She seems to be over her intestinal virus.  And she is smiling again - the grinning kind.  Every time we go back to a few days without this, I remember when she had her first spell - when we wondered if we would ever see her smiles again.  So, I think we treasure them that much more...

Can I ask you to pray for me that I will start sleeping again?  I have been having trouble with insomnia for awhile now - and it's been bad for the past month.  I often go to sleep fine, sleep for a few hours and then I am up the rest of the night....or I can't sleep at all until 6 or 7 am, then fall asleep, only to wake up by the kids.  I have had spells like this before but this one seems particularly bad.  And when I am tired, I have less reserve for those 'high-pressure' times. Those who know me know how much I love my sleep and miss it when I am not getting it;) And I am trying hard to focus on 'resting' and not 'sleeping' so I don't stress out about it.  I wonder if this is the effect of the last year's stress catching up, and lack of exercise probably plays a part too... I have already tried several herbal remedies...still open to hearing what works for you:)  Thank-you.