New Year's Eve

I hope you are enjoying a special New Year's Eve.

I've been battling my cold today.  I gargled with salt water (advice from my parents and in-laws), I found a great video on-line about self-massage of the lymph system for sinus relief and followed the instructions, I slept and drank lots of water, ate spicy food, bought and used a neti pot, and before I go to bed I will boil ginger and brown sugar as per our nurse's traditional remedy from China.  I will be a new woman tomorrow and I'm looking forward to it!  In the meantime I'm going through lots of Kleenexes.

When the nurse arrived at 8:00 AM, Graham and I went back to sleep.  We must have been tired as my mom and Graham's dad dropped by separately and we slept through both of their visits.

We saw our visiting nurse and our nurse practitioner today.  The visiting nurse will return on Wednesday and we'll try to assess if the amount of morphine we're using is sufficient.

We enjoyed a take-out Indian meal with my parents tonight.  Josiah slept beside us in his stroller while we ate.

Graham and I watched a tear-jerker YouTube video this afternoon and we cried.  We weren't crying for the boy in the video though.  I want my son.  I want him in 2014.  I want him to grow up with Isaac.  I want to be his Mommy.

I went to the store this afternoon as I couldn't let the day pass without my neti pot.  Looking around, I realized that I just wanted to be home with my son.  Yet I hate listening to him moan and I don't want him to live in suffering.

We missed Isaac today but he's in good hands with his grandparents.  

I don't do the "Why me, Lord?"  That doesn't make sense.  My refrain would more likely be, "Why not me, Lord?"  However, I do have theological questions that I hope to be able to find time to write about at some point.  For now I'll share a quotation written by Ann Voskamp on her blog which resonates with me:

"He came into our stench and sin and suffering and He came into our wounds and touched our wounds and took our wounds, and though Job’s tortured questions were answered only with questions — the mystery of suffering that isn’t ours to know — Job is satisfied because God came.  He came – and the God of life tasted death, and the God of reconciliation obliterated the alienation of man by hammering alienation straight into the very heart of God. He came – because in all our pain, we don’t want some answers like we want a Someone.  He came – and He cups us in our aloneness and our agony, in our weeping and our wondering, in our howl, “My God, my God, why has thou forsaken us?” – and He whispers, I am Emmanuel, God who is with you."

I'm so thankful that God is with me.  I'm thankful that He's with my family and He's with Josiah.  I hope you have welcomed Him to be with you too.       


If you have prayed for us in 2012, you have blessed us immensely.  Thank you and God bless you in 2013!

Blessings,

Elizabeth

Sabbath rest

I can't tell if this cold is getting better or worse but I enjoyed being able to sleep and rest today.  With Isaac at his grandparents' home, Graham has taken up residence in Isaac's room to hopefully stay away from my germs and get a better night's sleep.

Our weekend nurse once again had lots of cuddles for Josiah.  Today we gave him morphine with each feed from 6:00 AM until 6:00 PM.

We missed a great day at church today.  Everyone shared a meal together at 11:00 and then there was a baptismal service at noon with eight people getting baptized.

I was thinking of and missing the amazing CCCU nurses from SickKids today for no reason in particular.  Actually, I saw an uncommon name written down, the same name as one of the nurses and the different nurses just popped into my head.  Their care for Josiah was such a blessing.  Of course we also appreciated the nurses from 4D but having one-on-one nursing for three months means you get to know the nurses a little better.

We saw Isaac twice today using FaceTime.  He's been having a good time with Grandma and Grandpa F.

Josiah slept a lot today and also groaned a fair bit.  A stroller ride was able to calm him down once.  While we were eating our tasty dinner, Josiah was so out of it that we were able to put him in his chair in the kitchen.  It was nice to have him there with us.

I want to be better so I can hold him close.  Thanks so much for all your prayers.

Blessings,

Elizabeth 

Fun in the snow

 Grandpa F's awesome train track arrangement

God sent us the perfect nurse today.  She's an RN and has lots of experience with children and babies and currently has another patient who is a baby.  We asked her lots of questions and she had good advice.  Graham actually said he would feel fine leaving her completely alone with Josiah.  The extra hands are still helpful.  Shortly before 3:00 I saw that she was cuddling Josiah on the chair so I prepared the feed and medicines so she wouldn't have to put Josiah down early. 

I was in bed a lot today and even had some sleep between coughing and blowing my nose.  I've tried to keep my distance from Josiah.  I don't think he'd be able to cope with this cold and the thought of trying to suction him is awful.

Josiah acted differently again today.  The day seemed to begin better without the need for extra morphine until around 10:30 AM.  I had some little smiles first thing in the morning and I heard that Grandma was given a smile as well.  From mid-morning to mid-afternoon he groaned quite a bit.  The nurse tried doing exercises on his mat and in his swing but he also cuddled on her on the chair and lay in his crib watching Old McDonald Baby Einstein.  He startled easily from sleep and we suspect it could be due to bad dreams, a side effect of one of his drugs.

Isaac learning new tricks from his Grandpas

We gave another dose of morphine mid-afteroon and since that time he has been sleeping on and off and basically dopey and out of it, quite atypical from what's he's been like the last few days.  He hasn't cried or moaned and didn't mind us turning him in bed.  It's nice to see him content but all changes cause uneasiness and wondering if these are "signs" and indicators.  I said to Graham, "If I thought he was dying I would cuddle him."  However, even though I wash and use the hand sanitizer I'm sure my germs are not contained.

Isaac enjoying his sleigh ride

Graham's parents were here today so Isaac had a blast.  They invited Isaac to their house for a few days so he went happily with them after supper.  We also sent along the last two Christmas presents that he didn't get around to opening (I don't imagine that will happen when he's older).  Two times today he received three tasty goldfish for using the potty (fortunately friends advised of the obvious negatives to using smarties as a reward).  He also had a lot of fun in the snow with Graham and his Grandpas and Grandpa Ray designed a great train track.

We missed attending an extended family Christmas gathering on Wednesday but today we were surprised and thankful to receive gifts they had sent us via Graham's parents.  We have an incredible family!  Our family has shown their love to us in so many ways.

The nurse comes back again tomorrow morning which is a great relief.  We'll try to rest more.  I need to be perfectly well and in peak shape for when Graham returns to work on the 7th.  God will provide.

Thanks for your prayers and support.

Blessings,

Elizabeth

Stroller Rides and Spanish Lullabies

Josiah was irritable again today.  The nurse said that he's been acting differently these last few days.  He used to wake up happy and settle better after morphine but he's been moaning more.  Usually we've only had to resort to trying a stroller ride in the afternoon but the last two mornings we've put him in the stroller.  I asked the nurse to listen to his chest but his lungs sound clear.  I wonder if he is in pain for some reason.  We may try to get the local nurse practitioner to look at him but I don't imagine she's available on the weekend.

The good news is that he did have a good sleep last night.  We woke up to our 5:40 alarm and I didn't see Josiah awake until I gave him his 6:00 meds and feed.   Isaac also slept until 6:15!  Yeay!

We have a different nurse for tomorrow and Sunday.  We had cancelled Monday and Tuesday of this week so that's why we're having the weekend shifts.  It will be nice to have someone here but it will take some explaining of things.  Hopefully Josiah does well with her.  Thankfully Graham's parents will be with us tomorrow all day to help with Isaac so we can help the nurse when needed.  

My mom came over to help with Isaac this morning and Graham and I napped (I'm extra tired due to my cold and Graham is extra tired as he's been doing the late night feed.)

Isaac also had visitors this afternoon who played with him while we caught a quick nap and attended to Josiah.   Josiah enjoyed some Spanish singing from one of them while Graham, Isaac, and I enjoyed a delicious supper.

Graham and I decided to enjoy an episode of The No. 1 Ladies' Detective Agency tonight.  It's just finished so it's time for bed.  It's been nice to relax together on the couch. 

Thanks for your prayers and support!  It's great to be able to talk to a God who hears and cares.

Blessings,

Elizabeth

Fragile

I feel under the weather so I'm heading to bed.  Josiah didn't have a great day.  His nurse said he was fragile in the sense that he would wake very easily and start to cry.  We gave him his regular dose of morphine at 6:00 AM and then needed to give him more at 8:00 AM.  

I wondered today if we need to start thinking about subcutaneous morphine as it acts more quickly than oral doses.  It seems to take a good half hour of Josiah crying and moaning for the morphine to kick in.  Now that we don't have the PICC line we don't have an immediate option for the morphine pump. 

Friends came over in the morning and helped with Isaac so I had a nap and then we had a nice visit.  Isaac ended up having a three hour nap so we were able to nap in the afternoon as well.  I was extra tired today.  Other friends brought a delicious dinner.  They had perfect timing as new faces in the house seemed to distract Josiah and he calmed down and fell asleep in his stroller.  The friend who brought the meal supply teaches at a Christian school and she told me that she gives the children updates on Josiah.  She thought over half the school has prayed for Josiah.  That's amazing and very encouraging!

Thanks so much for keeping us in your prayers!  Please pray that Josiah will not catch any sickness.

Blessings,

Elizabeth

P.S. I liked the quotation I read tonight:  "Worrying does not take away tomorrow's troubles; it takes away today's peace."

  

Staying warm and cozy

I'm cold.  I'm in bed with a hot water bottle at my feet, drinking tea and happy to have fleece pajamas.  I'm hoping that it's just due to the weather outside and not actual sickness.  We're praying for health in this house.  (I hope you grew up with hot water bottles - they're great.)

Josiah had a better day than yesterday.  He slept a lot of the day yesterday as we had to give him five doses of morphine due to laboured breathing between his sleeps.  He just had morphine three times today.  It's nice to see him biting the teethers and toys he received for Christmas.  His favourite thing to gnaw on is the oxygen mask and tubing that we use for his blow by.   

Isaac received some training pants and underpants for Christmas (don't worry - he also received other fun gifts).  Surprisingly he wasn't excited by this gift and wouldn't try them on.  Today while I was changing his diaper I put the training pants on him while he was looking the other way.  Thankfully my plan didn't backfire.  He even agreed to try on the Elmo underpants and then didn't want to take them off.  I believe we're going to have to start using incentives.  He usually doesn't mind going to the potty and he's more patient than Mommy while on the potty but it's not too often that he asks to go there himself.  Perhaps Smarties and Elmo underpants will do the trick. 

Isaac has played with a Noah's Ark with a toucan so that's why he knows the word toucan.  Tonight at dinner he put the end of the orange pepper in his mouth and said, "Toucan" and then started flapping his arms (we're assuming the orange pepper was supposed to be the beak).  He keeps us laughing.  We were explaining the meaning of his name the other day and I think he likes that it means "he will laugh."

Here are two Christmas songs that I enjoy. The first, "Breath of Heaven" reminds me of the pain that Mary must have gone through.  I love the tune of the second song, "The Huron Carol", and it reminds me that the whole world changed for everyone that holy night when Jesus was born.  He was and is a gift to all.  I never want to imagine what my life would be like if I didn't know Jesus or know that I am not alone, that I am loved beyond measure, and so are my boys - forever and ever and ever.  The night can seem long and dark and God can even seem quiet but His Spirit is with me and in me and that makes all the difference (and if I prayed and read the Bible more He might not seem so quiet!)  So many people in the world suffer vastly more than we will ever suffer.  We know joy comes in the morning and we experience joy every day as God opens our eyes to His good gifts ... like well chosen teethers and a BM after three days (Josiah's BM!). 

I hope you know the love, joy, and peace of Jesus.  Thank you for your prayers! 

Blessings,

Elizabeth

Merry Christmas!

We hope you all had a wonderful Christmas!  We enjoyed celebrating God's amazing gifts with our family.  How incredible it is to know that God is always with us and we can know true peace and joy through Jesus.  Here are some photos from the last few days.

Thank you for your prayers and support!

Blessings,

Elizabeth

'Twas the Night Before Christmas

It's Christmas Eve at the Faulkner's, and the kids are sleeping peacefully and the Faulkner grandparents and parents are heading there soon.

It has been a long but good day.  We left for SickKids at about 7:20 AM and arrived there in about an hour as there was perfect weather and very little traffic.  This meant we were well on time to prepare Josiah's 9:00 AM feed after we parents and grandparents had a quick Tim Horton's breakfast.

At 10:00 AM we headed to Image Guide Therapy (IGT) to check in for the procedure.  The nurse came and took a pre-procedure look at the PICC line and saw that the cuff had come out on its own.  "This is going to be really easy," she said.  We waited briefly for the nurse practitioner to arrive, and then Elizabeth, Josiah and I headed into the room with her.  It was great to see the NP again and to catch her up on Josiah's progress.  The nurse was indeed correct: the PICC line came out so quickly and easily, that I actually missed that she had done it.  She placed a bandage on the area and then gave us some brief instructions on its care for the next several days, and then we were able to leave.  Another IGT nurse came by with a toy truck for Josiah for Christmas which was sweet and thoughtful.

After the procedure was done we headed back downstairs to grab some lunch for us all and to prepare Josiah's 12:00 PM feed.  We weren't the only parents feeding their child through an NG tube while taking them for a stroller ride on Christmas Eve.

We ran into one of the awesome charge nurses from the CCCU on our way down which was great.  She suggested that we not visit any of the nurses due to all the flu that has been going around.  4D is essentially on lock down right now due to the flu.  After the feed finished we headed back to Kitchener and had another smooth ride home (save for a quick stop near Milton after we suspected Josiah had a dirty diaper -- false alarm, thankfully).

Isaac spent the night with his aunt, uncle and cousins and had a wonderful time playing with them today.  Grandma and Grandpa Lucas kindly went to pick him up after we got back to Kitchener while I went to the store for some last minute groceries for tonight and tomorrow.  Isaac made it clear though that he wanted some time with his parents, as while I was holding Josiah he came into the room and said "Baby out" i.e. Daddy, put Baby down and come play with me.  We continue to pray that this whole journey with Josiah doesn't negatively impact Isaac, and it was a gentle reminder that he needs lots of focused attention from his mother and me. 

It will be fun to wake up tomorrow morning and see how Isaac reacts when we tell him he can finally open the gifts under the tree.  He has been very good to not touch them (as far as I can tell anyway) or the ornaments on the tree (well, outside of normal two-year-old curiosity).  We'll get Josiah setup with an oxygen tank so we can bring him into the living room too to share in the festivities.

In lieu of attending a Christmas Eve service we watched the online service from Saddleback Church.  They showed a video version of the song "Mary Did You Know?" that we wanted to share with you.

Have a blessed Christmas everyone!  We are so thankful to have Josiah home for Christmas, and for all the blessings we have received throughout this journey.  God has been very good to us.

Blessings,

Graham

Almost made it

Well, we almost made it to church this morning.  We had to go by Elizabeth's brother's place to drop off Josiah's oxygen concentrator and some of his meds before we got to church.  Unfortunately when we got to their home we realized we had forgotten his supply of milk for the day at our house.  So, as we were already running quite late, we headed back home to pick up the milk and then returned to Elizabeth's brother's to setup Josiah's equipment and relax before the rest of the family returned from church.  It sounds like we missed a great worship service.  It would have been amazing to be with friends and family the Sunday before Christmas.  Perhaps next year...

The afternoon and evening was another fun time with the Lucas clan.  Isaac went with his cousins and aunts and uncles for a long walk in the cold (well, he was on a wagon) while his Daddy snoozed and his Mommy watched Josiah.  It is fun to watch Isaac interact with his cousins and to follow along with everything they are doing.  He seemed to go down well tonight at his aunt and uncle's, so hopefully it is a not-too-early morning for them tomorrow.  

We are now preparing for the big outing to SickKids tomorrow morning so I will sign off for now.  Hopefully it is an uneventful time, and that we can have a relaxing Christmas Eve and Christmas Day with our family.

Thanks for all your prayers.

Blessings,

Graham

Lucas Family Christmas

Both boys were up early again this morning...they must have been excited about going to the Lucas family Christmas today!  Thankfully it was the second night in a row where Josiah slept until 5:00, so we had a bit of extra sleep.

Because we were going to be gone for most of the day we had to make sure we had all the equipment and supplies we needed for any eventuality: medications, feeds, feeding system, stethoscope, oxygen tanks for travel, oxygen concentrator to use at the house, and various medical supplies.  Thankfully Grandma and Grandpa Lucas came by with their van to pick up Isaac and most of the items.  Minus the concentrator, it will be similar to what we need for Monday's trip to SickKids, so it was good practice.

We all had a wonderful time today with our family, and of course ate way too much delicious food.  Josiah had lots of cuddle time with Grandpa and his aunts, and looked extra cute (and more grown up) in his jeans and long-sleeve plaid button-up shirt.  He was generous with his smiles at various times throughout the day, and only needed an extra dose of morphine at one point.  Isaac had a great time playing with his cousins and aunts and uncles.  Isaac also enjoyed helping choose which child would get the next gift during the time for opening presents.  He and his brother were blessed with lots of amazing Christmas gifts.  Hopefully Isaac understands a little bit of the true meaning of Christmas.  When we ask him "What do we celebrate at Christmas?", he typically answers "Baby Jesus".  Lord willing we can keep that message clear to him and his brother in the years ahead.

When we got back to our home tonight Isaac went to sleep very well, and Josiah was nice and sleepy too.  This worked to our advantage as we switched out his nasal prongs and changed all the tape on his face.  The NG tube now has its own tape like we used to have, which should work a little better.

Lord willing we will venture out to church in the morning before heading over for more Lucas family time all afternoon.  Isaac will stay over at his aunt and uncle's on Sunday night and all day Monday as Elizabeth and I will be leaving first thing on Monday morning to SickKids with her parents in their van.  Hopefully the traffic is not crazy as Josiah is not a fan of being strapped into a non-moving vehicle. 

For those praying for us, here are some prayer points:

1. Josiah's PICC line removal on Monday - that everything goes smoothly and that there are no negative repercussions from the old clot
2. Safe travel on Monday to and from SickKids
3. Special Christmas Eve and Christmas Day with the boys and all their grandparents
4. Ongoing wisdom regarding Josiah's day-to-day care

We are indeed blessed to have wonderful family, amazing friends, and a loving God who cares for us.  Thanks for following along and for your prayers!

Blessings,

Graham

PICC line challenges

Josiah had another good night last night.  Isaac enjoyed cutting out sugar cookies this morning with Mommy and Grandpa.  We didn't get around to decorating them as we were interrupted by the nurse's arrival.  I was practising my heplocking skills when the nurse noticed that the fluid I was pulsing in to Josiah's PICC line was weeping out where the line enters his skin.  Presumably there is a hole in the line close to the insertion point.  I emailed our nurse practitioners at SickKids, called the Palliative Care Team and spoke with a Vascular Access Nurse.  The nurse practitioner spoke with three cardiologists and the decision was made that we should go to SickKids on Monday to get the PICC line removed.  We need to be there at 10:00 AM.  This was not our hope for Christmas Eve but it will be nice to see our nurse practitioner again and I'm glad we're able to get this done at SickKids.  There is low risk in this procedure.  The end of the line is sitting in a clot but the clot is old so the expectation is that the clot won't move.  That's what we'll be praying for.

Our nurse practitioner from McMaster called today just to let us know she's been thinking of us.  We've been blessed with such amazing care. 

A neighbour came by this afternoon with gifts for the boys.

Graham was at the grocery store when I heard the doorbell at 10:00 PM.  I immediately thought, "Why is Graham using the doorbell?"  I looked out the peephole but I couldn't see anyone and I called out but no one answered so I didn't answer the door.  A little while later I heard someone knock on the door.  When I arrived at the door I could see someone run by our front window.  I called out again but no one answered so I didn't open the door.  I assumed some youth had run out of fun things to do.  I called Graham's cell to ask him to use his key when he returned instead of knocking.  I heard the garage door when Graham returned so I opened the door and there on the doorstep was a gift for us!  So, we'd like to send a big thank-you to whomever left the gift!  We have incredible friends.

Our 'Thank you card' list is growing by the day. 

It's time for bed.  We have a big day tomorrow as we're headed to my brother and sister-in-law's home to celebrate Christmas with my side of the family.  Hopefully Josiah enjoys his outing. 

Thank you for your prayers and support!

Blessings,

Elizabeth

A great day

Isaac and Josiah sharing a laugh

Last night was a better night and it's been a great day.  Josiah was happy for most of the morning.  Isaac lay down beside Josiah on his mat and Josiah thoroughly enjoyed the company of his big brother.  He actually laughed at Isaac.  It was lovely to see.  Josiah spent quite a bit of time on his mat doing exercises with his nurse and also sitting with support and even turning the pages of a soft book.

A friend from church came over and played with Isaac this morning.  This was a great blessing as it allowed Graham to nap while I prepared for our lunch visitors.  Graham has done the late feeding shift these last couple of nights while I slept.   

It was wonderful to see my cousin from Switzerland today.  My parents and nieces were also able to join us for lunch.  A dessert that was delivered to my home yesterday was a pumpkin spice jelly roll with cream cheese filling.  When I saw it I thought it would be perfect to serve my cousin though I didn't know if she liked pumpkin.  It just so happens that my cousin loves pumpkin and actually takes pumpkin with her back to Switzerland as it's hard to find where she lives so it was the perfect treat (and very delicious).

Isaac had his two-year doctor's checkup today.  He is apparently slightly taller than average and slightly below average for weight thus it was suggested that we keep giving him homogenized milk instead of changing him to a lower fat milk (just in case you were wondering what type of milk we give him!)    

Graham's parents came this afternoon and other friends dropped by later on to bless us. 

I was changing Isaac's diaper and he told me, "Daddy lied."  I said that Daddy didn't lie but he repeated, "Daddy lied."  I said, "What did Daddy lie about?" and he responded, "Daddy lied bed Isaac".  Yes, last night when Isaac called Graham in after we had already said goodnight, he asked Graham to lie down beside him.  Graham may have held out and said no except that Isaac says, "little bit" in the cutest possible way so Graham "lied" a "little bit" beside Isaac on the bed.

Josiah was not happy from around 5:30 PM to 7:30 PM.  We gave him morphine and blow by and he eventually settled but it's certainly not nice to listen to him moan for so long while rocking him and trying to find the perfect position that will help to calm him.

Graham and I actually sat on the couch and watched a movie the other night.  We would stop it every so often to make sure we weren't hearing Josiah cry but apart from that it was just nice to do this as it has been a while.   
 
It's time to say good-night.  Thank you all for your support and prayers.  We are truly blessed beyond measure.  God's love has been demonstrated to us in countless ways. 

Blessings,

Elizabeth

More knots in the quilt

Josiah was awake quite a lot last night but I was not.  I pretended to be awake.  I went in to him around 2:30 when he started crying and I changed his diaper.  About an hour later I thought his diaper felt funny so I checked it and realized that I had simply put a new diaper over his old one!  How ridiculous!  I have never done that before.

Our pastor's wife called us yesterday to say that she was available to come over and help today.  She went to the grocery store for us, wrapped our Christmas gifts, cuddled Josiah, and played with Isaac.  What a blessing!  Another friend from church dropped by in the morning with amazing goodies.  She had perfect timing as my cousin from Switzerland is coming for lunch tomorrow so she'll be able to enjoy them.  It's nice to have people tie a knot on Josiah's prayer quilt when they come.  If you visit and I forget to ask you to add a knot to the quilt (to represent your prayer), please remind me.  It's the first thing you see on the wall when you enter Josiah's bedroom.

Josiah had a good morning in which he spent a fair amount of time on his mat with his nurse.  He also had some smiles this evening.  The physiotherapist was happy to see Josiah sitting calmly in his stroller and enjoying his ride when she arrived.  I told her that it meant that he was fussy as the stroller usually soothes him.  We took him out of the stroller for the physio and he was fussy but he was able to tolerate it for a while though we didn't try tummy time.  I asked the PT if she could tell if Josiah would be able to support weight on his legs one day (and thus walk).  She showed me a new exercise to do with him to put weight on his legs.  I haven't noticed any progress in this area.  Actually, if he could learn to sit that would be amazing.

Graham and I were able to have a nap today and thankfully Graham is over his cold.  The heplocking is going well so I'll be able to go solo this Saturday when we'll be celebrating Christmas with my side of the family and then on Christmas day as well.       

We had another delicious meal tonight.  We're in for a wonderful and busy day tomorrow so I'll say good-night!  We are so blessed by everybody supporting us and we're thankful for the amazing "peace of God that transcends all understanding" and "guards our hearts and minds in Christ Jesus" (Philippinas 4:7).

Blessings,

Elizabeth

A sleepy boy

We gave less morphine today but Josiah was still a very sleepy boy.  He seemed to sleep most of the day.  It's nice to see him content but Graham reminded me that we were told he would become more sleepy as the disease progresses.  He was also up a lot last night.  I went in around 2:30 AM and changed his diaper but he wasn't going back to sleep.  I gave him morphine at 4:00 AM and it kicked in a while later but Isaac woke shortly before 5:00 AM.  That early morning dose was the only extra dose that we gave him today.

We woke Josiah up when the dietitian came to weigh him and we woke him when the OT and Speech and Language Pathologist came to observe him taste test some squash.  He weighed 8.03 Kg but I suspect he'll lose weight as we've decreased his feeds to see if it helps with his fussiness.  I just want to find the perfect formula ... and make it all better.

He didn't mind the taste of the squash and he lasted a long time in the chair but he certainly didn't gobble anything down or open his mouth wide. 

Graham and I gave him a bath.  We're using our wonderful whale baby bath and he doesn't mind the washing process though he's not a fan of drying off.  He enjoyed his new tummy time toy we got on Kijiji and I think he held up his head longer to look at the moving pictures.

I went out for an hour to look for a couple of items for Josiah.  I just want to buy him the moon - something that will bring him joy and a sparkle in his eye.

The other day Graham's cousin brought over a stuffed puppy that sings a Christmas rendition of "You Make Me Want to Shout."  You can picture the Faulkners dancing to this music in the kitchen.  Isaac has some sweet moves.

Thank you for you support and prayers.  God provides our daily bread in so many ways.  We are well aware that there is so much heartache in this world.  We are so blessed to have this time to spend with our sons.

Blessings,

Elizabeth

Prayers for a friend

Grandma F. came to help today so Graham and I both had a good rest and thankfully he's feeling quite a lot better.  Our regular nurse is going to be away tomorrow so a new nurse came today to learn from him and she'll be back tomorrow all day.  Isaac enjoyed making shapes in playdough with Grandma.

We had some visitors today.  Graham went and picked up an item I found on Kijiji that will hopefully help Josiah will his tummy time.  We'll put in the batteries and try it out tomorrow.  I am ever hopeful.

Isaac woke up screaming and crying after his nap today.  He's done this a few times over the last couple of months.  Nothing is wrong but he has a very difficult time calming down.  It's hard not to wonder what's going through his mind and whether or not all that's been happening with Josiah has something to do with it.  Please pray for him.  

I was very sad to find out that a baby I had known at SickKids passed away two weeks ago.  She had been at SickKids since a week before we arrived at the end of July.  Please pray for her family.  I can't imagine the pain her mother is feeling now.  I'm praying that she'll know the comfort and peace that only Jesus can give. 

Thank you for your support and prayers. 

Blessings,

Elizabeth

Beautiful gift

Sadly, we missed church today.  Graham has a cold so he tried to get some extra rest throughout the day.  We're praying that he recuperates quickly and the rest of us stay healthy.  He kept his distance from Josiah today.  

I didn't think I was allowed to heplock Josiah's PICC line but the visiting nurse said that I could.  The theory is easy but the challenge for me is just dealing with air bubbles while pulling two different liquids into the one syringe (heparin and saline).  Today's nurse did one syringe and I did the other (Josiah has two lumens on his PICC line and they each need to be heplocked daily.)  This week I'll try to do one of the lumens each day with the visiting nurse and then I'm hopeful that I'll be able to do it on Christmas so that a nurse doesn't have to come and see us.  We've already said that we won't need the shift nurse on Christmas in the hope that he'll be able to be with his family.

My brother came over today so Isaac and Josiah had some quality uncle time and Graham and I had some rest in addition to quality brother time.  Other friends from church came over and blessed us this evening.  It's always nice when others are able to hold Josiah.  He's definitely a chunk.  We're rethinking the amount of his feeds.  At the hospital we had reduced his feeds to 75 mL every three hours but then when the dietitian here said he'd lost weight we decided to increase the amount of his feed if he tolerated it.  He certainly tolerated it in that he hasn't had reflux with his feeds; however, it's difficult to say if it's made him fussier.  We shouldn't have been surprised that he had lost weight and we originally reduced the amount so that he would be more comfortable.  On the other hand, some of his fussy times seem to be about a half hour before his feed, possibly indicating that he is hungry.  If only he could tell me clearly what he's feeling!  We pray for wisdom and believe God gives it.     

"Children are a gift from the LORD; they are a reward from him." (Psalm 127:3)  Josiah is a beautiful gift and we thank God for him.

Thanks for your prayers and support!

Blessings,

Elizabeth

A fussy boy

We gave Josiah morphine five times today, starting at 1:00 AM.  He went to sleep fussy last night and woke up the same way.  I was in Isaac's room this morning when I heard Josiah crying loudly with Graham.  I put Isaac's light on and gave him his children's Bible and another book and then Graham and I worked on calming Josiah down with morphine and blow by oxygen.  Around half an hour later, Isaac called for me.  I went in and said that Daddy and Mommy were helping Josiah.  He said, "Help too." and climbed out of bed.  I said he needed to go to the potty and then I said he could help by praying so he put his hands together and prayed after me for Josiah while sitting on the potty.  Graham told me that later in the morning Isaac noticed a cut on Graham's hands so he said, "Dear God, Daddy better.  Amen."

We miss our nurse on Saturdays but Graham's parents blessed us tremendously with their love and help today.

Between crying spells, Josiah enjoyed some time on his mat and in his swing and in the stroller.  At one point he particularly enjoyed me kissing his tummy.  We're thankful for the great moments.

Thank you for your prayers and support!

Blessings,

Elizabeth

Another outing

Isaac and I ventured over to Grandma and Grandpa's house today for a visit.  A couple of minutes after I left, a friend showed up at our home whom I haven't seen for months.  I look forward to seeing her soon.  While Isaac napped I went to the mall to return a couple of items I bought yesterday.  I had bought a zippered fleece for Josiah but once home I realized that it would be too warm for him (he gets sweaty and clammy very easily) and the hood would get in the way while he was sleeping.  I went through Isaac's old clothes yesterday and realized that Josiah can easily wear button up shirts and thin zippered tops.  Since coming home he's only been in buttoned sleepers as we can put them on and not affect the oxygen tubing and we can easily access his tummy to check pops and his foot for the sat probe at night.  It will be nice to get him out of the sleepers for a change.

It's good to get out of the house but as I drove with Isaac I thought that there should be two children in the car with me.  

I've been trying to get Josiah on his mat between 7:00 and 8:00 in the morning before the nurse arrives.  He's usually awake then and in a relatively good mood.  This tires him out so then he sleeps for a while after that.  He has good mornings but he's often irritable in the afternoon.  We gave him his 6:00 morphine an hour earlier but we probably should have given it to him earlier in the afternoon.  He's been irritable this evening and hard to settle.  We gave him some benadryl but we may need to give him more morphine.  Graham is in with him now while I type this so I'll say goodnight.

Thank you for all your support and your continued prayers.  We appreciate your perseverance in praying for us.      

Blessings,

Elizabeth

Eight months old

For some reason it seems harder to listen to Josiah cry.   I don't want him to be sad or uncomfortable or in pain. 

I drove today for the first time since July.  I did a little Christmas shopping at the mall.  I couldn't resist the Elmo underwear for Isaac.  He's not ready for them yet but he may be soon and a little extra motivation won't hurt.

A staff member from the Hospice of Waterloo Region came to our home today.  We will get paired with a volunteer who will come to our home once a week, starting in January.  Visits are usually between one and four hours.  We think we'll have the volunteer play with Isaac.  We may also have their social worker come and speak with us to give us tips about how to speak with Isaac about all that's going on.  Isaac likes to pat Josiah like he sees me doing to soothe him.  He also likes to pass him toys.  Isaac watched us give Josiah a bath in our baby bathtub yesterday (typically we've just been giving him sponge baths to keep his PICC line dry).  Graham was not surprised when Isaac asked to have his bath in the baby bathtub tonight.   

Isaac had a lot of fun on his "aunt date" today and was very happy to play with his cousins after they finished school.  He also had fun with his second cousin late this afternoon.

It's time to refill the bags with syringes and head to bed.  Thank you so much for your prayers and support.  It's hard to believe that Josiah turned eight months old today.

Blessings,

Elizabeth

Pewter and Poetry

I was thinking last night about how lovely it is to watch Josiah sleeping peacefully.  His sats are often high 70s or low 80s when he's asleep and he looks quite perfect apart from the NG tube and the nose prongs.  Josiah slept well last night.  He just woke up once when he needed his diaper changed, and then went back to sleep. 

Josiah had a good day today.  He tolerated exercise time and he was even on his tummy for quite a while.  He usually just cries when I put him on his tummy.  He also gave beautiful smiles to his grandparents before his lunch.

I've liked pewter since my kindergarten teacher gave me something made out of pewter.  I was in grade five at the time and I'm pretty sure it was a little bunny pin.  Graham and I honeymooned in Nova Scotia and part of our trip was in Mahone Bay where there is a pewter studio.  We order a pewter ornament every year and our children have their own ornament with their name, birth date and Bible verse.  Josiah's ornament arrived yesterday.  It's called "Cherish" and shows a mother holding a baby.  This year's annual ornament is a mother polar bear with her two cubs.  Graham bought me a pewter heart necklace on our honeymoon so I also have a necklace for each child.  Josiah's necklace arrived yesterday as well.  It's called "Heart Beat."  It has a little cut-out heart on the bottom and the rest is a hammered texture.  I chose it because of the heart and because it made me think of the poem below by John Donne.  I don't like violence and this poem has violent imagery but I like the poem and I feel like it goes along with this journey.  I do hope it doesn't offend anyone.

BATTER my heart, three person'd God; for, you
As yet but knocke, breathe, shine, and seeke to mend;
That I may rise, and stand, o'erthrow mee,'and bend
Your force, to breake, blowe, burn and make me new.
I, like an usurpt towne, to'another due,	5
Labour to'admit you, but Oh, to no end,
Reason your viceroy in mee, mee should defend,
But is captiv'd, and proves weake or untrue.
Yet dearely'I love you,'and would be loved faine,
But am betroth'd unto your enemie:	10
Divorce mee,'untie, or breake that knot againe;
Take mee to you, imprison mee, for I
Except you'enthrall mee, never shall be free,
Nor ever chast, except you ravish mee.

It's sort of the poetic version of, "Please hit me over the head with a two-by-four Lord.  I need You to come and change me  - this will hurt.  I need You to capture my heart, mind, and soul because I can't do this on my own.  I need the freedom that only you can give by taking me to Yourself as Your own."

I don't want to think about where we'd be without family and friends (that includes our church of course).  We had three grandparents here over the course of the day helping out and the fourth grandparent was no doubt praying up a storm.  Once again we were blessed with delicious food today. 

I'm so thankful for our shift nursing and for our wonderful nurse who sings to Josiah and rocks him back and forth and tries to soothe him ... and I also fiercely wish that I didn't need a nurse to look after my son.

Thank you for your love, prayers, and support.  God's provisions are abundant.

Blessings,

Elizabeth

Birthday Boy

The birthday boy relaxing with his pet giraffe

Isaac is now officially two years old as today is his real birthday.  He clearly wanted to start his birthday early as he awoke before 5:00 but he eventually went back to sleep.  He opened our gifts today and had the end of the birthday cake.  Actually, we were trying to get him to eat more vegetables at dinner.  We said, "What do big boys eat?"  and right away he responded, "Cake."

Josiah had a better night last night.  We give him lasix at midnight so he usually needs his wet diaper changed at some point in the night.  This morning we had an uneventful trip to the hospital.  Josiah reacted reasonably well to the shots and the nurse thought his PICC line site looked fine.  The doctor wondered if we should consider removing it due to the risks of infection but we've decided to keep it for now as there are other risks involved with removing it as well as the benefit of having access for a morphine pump, if the need arose.  We're praying it doesn't get infected.  

Heading into the cold with Grandma and Grandpa

We gave Josiah more morphine and blow by oxygen today.  We may start giving him three regular doses of morphine in addition to whenever he needs it (we are currently giving two regular doses).  He was making a moaning sound today.

Graham and I were both able to have naps to catch up on lost sleep while Isaac visited his grandparents at their home.  He really is an amazing boy and just goes with the flow of what's happening. 

It's time for sleep.  Thanks so much for your prayers and support.

Blessings,

Elizabeth

PICC line to be assessed

We are heading to Grand River Hospital early tomorrow morning as Josiah is getting a vaccine and his paediatrician will also assess his PICC line.  It's been weeping the last few days so the nurse asked us to see the doctor.  We're praying that it will be okay as we really do not want to lose this line for various reasons, not the least of which is the fact that the end of the line is in the middle of a large clot.

Josiah was up a lot last night.  I gave him morphine at 3:30 AM.  It seems like he might be confusing day and night.  He was irritable and uncomfortable today.

I'm going to try to go to bed now so that I can attempt to keep my sanity.  Thank you so much for your prayers and support.

Blessings,

Elizabeth   

Sunday Go to Meetin'

It was wonderful to be back at our church this morning.  The nurse came to the house at 9:30 AM to hep lock Josiah's PICC line, so we were late arriving for the 10:00 AM service but we were still able to participate in the singing time.  We sang the song, "Glory to God Forever".  One part is "Take my life and let it be all for you and for your glory, take my life and let it be yours."  I was standing rocking Josiah in my arms.  I do want that to be true in my life (I have a long way to go) but I also sang the song replacing "my" with "his," referring to Josiah.  As I stood singing, I thought that if I had to choose between a short life for Josiah that brought glory to God and a long life that did not bring him glory, I would choose the former.  Of course, it's not a choice and I realize that Josiah can't choose to bring glory to God himself as a baby but I do believe that God can be glorified through Josiah's life even now and that's what we want.

Thankfully Josiah slept peacefully through church, aided by a little morphine.  He was fussy this morning with laboured breathing and we couldn't calm him down so we gave him some morphine.  It would have been nice to say hi to people at church but we had to leave early in order to be home to get his meds and milk ready for 12:00 PM.  Actually, we left at the perfect time because when we pulled in the driveway, one of Graham's wonderful colleagues was at the door ready to bless us with various treats.  It was lovely to see her. 

Isaac is quite good at saying "Sorry" (pronounced Saw-ree), although he is also apt to repeat the behaviour of which he is guilty.  Did I mention he was two?  Today while sitting on the potty he starting hitting his knee with his new toy hammer.  I said that I didn't want him to hit himself as he could hurt himself.  He immediately stroked his knee and said, "Sorry knee."  Earlier in the week, when his cardboard crocodile fell off the coffee table (his ark) onto the floor, he gently picked it up, cradling it in his arms and said, "Sorry."  

We had another delicious dinner provided tonight thanks to yet another friend.  We are blessed!

It's time to sign off.  We'll be glad to see our shift nurse again tomorrow morning.  Thank you for your prayers and support!

Blessings,

Elizabeth

Party day

Last night Graham and I debated whether or not to suction Josiah.  He was awake around 4:00 AM and his breathing sounded very congested.  We prepared everything we needed but his breathing improved after a number of sneezes and coughs.  Thankfully his lungs sounded completely clear when the nurse listened to them today.  (Even though we don't have a shift nurse on the weekends, a nurse still comes by to heplock Josiah's PICC line.)

Josiah had quite a good day today.  We gave him a bath this morning and that tuckered him out so he had a sleep.  We asked the nurse to help us with changing Josiah's face tapes.  It's not the nicest process for Josiah but we tried to be as gentle as possible.  For some reason the tapes didn't do their job well today as we needed to remove and add more tape a few times.  Thankfully we have a product that makes the tapes peel off without hurting Josiah.  Tonight Graham heard the faint sound of the sat monitor alarm going off.  When he looked in the crib he found Josiah happily playing with the nasal prongs in his hands (out of his nose) and the sat monitor wasn't reading correctly as the probe had fallen off his big toe.  We added more tape.

We had a fun day.  Before his nap, Isaac helped to decorate his birthday cake with smarties.  It looked great though he was a little disappointed to have to wait to eat his cake.  After he woke up he had a great time watching Grandpa F. blow up balloons and let some go.  He enjoyed being with his cousins, aunts and uncles, and grandparents.  One of my wonderful sister-in-laws made a delicious dinner for everyone while I had a nap.  Thank you!

We brought Josiah out to the living room and he was blessed to have many cuddles and I was blessed to watch him being content in his family's arms.  He breathed clearly today and didn't cough much.  The nurse told us that it's possible that his larger feeds could cause some extra nasal congestion or he could have a cold.  We're praying for clear nasal passages.  We don't want to have to suction him.  I believe it's very scary for him. 

We were very blessed with a visit from members of our church family tonight.  The love and support that we have received from our church family has been incredible.

I'm currently listening to a sermon podcast about the suffering of children.  Perhaps I'll comment on it another day.  It's time to head to bed.  Good night.  If you are reading this, I hope you know the love, joy, and peace of Jesus.

Blessings,

Elizabeth

P.S. What peace it is to know that we are always in God's hands.  Here is "Your Hands" by J.J. Heller:

Christmas decorating

Tonight will be a late night but the Christmas tree is up, we've had our eggnog, and Amy Grant is singing "Emmanuel, God with us."  I'm so thankful that He is.  There is light in this darkness and His name is Jesus, the light of the world (John 8:12).

Last night we had another couch date as we watched the following 12 minute video of John Piper reading his poem, The Innkeeper.  It was a good reminder for me after writing yesterday's blog post of the suffering and pain throughout history and all over the world ... and of God's amazing redemptive plan which came through the suffering and death of Jesus. 
 

Josiah was quite irritable today.  He has been coughing more and had some nasal congestion but both the nurse and physiotherapist said his lungs sound good and clear.  We looked at the suction machine tonight to make sure it's set up in case we need it. 

The physiotherapist was pleased with his work today.  It's her first real assessment of him and she'll be back in two weeks so we need to keep up with the exercises.  He's tolerated his increased feeds today. 

We're celebrating Isaac's second birthday tomorrow with family so I'd better get some sleep!

Thanks so much for your prayers.

Blessings,

Elizabeth

Thinking

I went to bed early last night.  I put the light off, closed my eyes, ... and started to think.  Sleep comes quickly at 12:45 AM but at 9:15 PM the thoughts come - the thoughts that are either deep inside or just below the surface - the ones I keep at bay with Isaac, dishes, meds, visitors, music, anything but cleaning.  It's probably good for me to try to process this reality we're living.  After Graham came to bed and fell asleep I started looking at photos on the iPod.  It's remarkably easy to go through the day and not think and not feel pain.  God, what are you going to ask of us?  This isn't supposed to make sense.  It can't make sense.  I can't make the logic argument for a suffering baby bringing glory to God.  However, I do know that God brings good out of bad, that God is good, He's in control, He loves us, and I can trust Him.  That's all I know and  I can rest in that knowledge even in times of pain and loss.  I'm speaking in faith to some extent as I haven't walked this particular journey before but God has never failed me.    

Family and friends came by today.  It's really nice to see people again.  Graham had a meeting to attend tonight so it was great to have a friend over to keep me company and help with Isaac.

I realized today that Josiah's picc line was not heplocked yesterday due to some miscommunication.  It's supposed to be done every twenty-four hours.  Thankfully the line flushed well when the nurse came today.  There was some bleeding at the site of the line so the nurse changed the dressing again. 

The dietician came this morning.  Josiah lost weight over the last week and a half so we're  increasing his feeds and we'll see if he tolerates it both by not having reflux issues and not becoming puffy.

The last couple of mornings Josiah has woken up around 4:00 AM.  Although it's a tad early, he smiles at me then and this morning he cooed and was clearly amused by the puppets on his DVD.  It's the happiest I see him all day so I don't want to miss it.  I would love to figure out how to help him be happier throughout the day.

We've noticed Josiah coughing a little last night and today.  I forgot to ask the nurse to listen to his chest.  The physiotherapist is coming tomorrow morning so I hope Josiah is in good form to work hard.  I'd love to see some progression in his physical abilities.

It's time to lay my head on my pillow.  Thank you for your prayers and support!

Blessings,

Elizabeth

Out of the house

Josiah made it out of the house today.  He wasn't very excited to wear his winter jacket or sit in the car seat when the car wasn't moving but he did fairly well.  We needed to go to the hospital to have his NG tube changed and to have an xray to confirm that it was in the right place in his stomach.  Lack of extra hands on our expedition was not a problem.  My dad drove us in his van and Graham, myself, and the nurse pushed the stroller and the oxygen tank and carried all our supplies.  We left around 10:15 AM and made it back home at 12:00, just in time for Josiah's lunch and meds.  I think he enjoyed being in the stroller again with something to look at other than our hallways.

We saw our paediatrician at the hospital.  He very kindly gave us his pager number in case we ever needed to contact him quickly.  It was nice to see some of the nurses we saw back in the spring when we had regular visits to Grand River Hospital. 

We had family and friends over again today.  Both Graham and I had a long nap which was much appreciated as we were both with our boys during the early morning hours.  I may have already mentioned this but we feel very blessed that both our boys go to bed at 7:00 PM.  We still have things to do for Josiah after that time but it feels like we get some down time.  Of course, I'm on schedule to go to bed around 9:00 PM tonight.  I'm a night owl and I can think of so many things I'd rather do than go to bed then but it will be good for all of us. 

I heard Josiah getting very upset tonight.  When I went into his room I realized that it was because his Baby Einstein DVD had ended and gone back to the main menu page.  He was fine as soon as I started the DVD.  He also often cries when the credits start rolling.  At least he is communicating effectively. 

Time to move along.  We're thankful to God for another day.

Blessings,

Elizabeth

NG tube troubles

We need to get a little more sleep.  We're going to try staggering when we go to bed.  One of us will go to bed early while the other one does the 9:00 PM feed.  Then the first person will get up around 11:40 PM to prepare for the midnight feed and be able to go back to bed around 12:40 AM.  We'll try this tomorrow night.

This morning a few family members dropped by for a visit, including a second cousin to play with Isaac.  We had two friends visit later in the day.

I was thinking earlier this week that I wasn't able to fulfill a tradition this year.  Each year a friend and I go to a pottery show and I buy a mug.  This would have been the fourth year.  I missed the Spring show as we had just arrived home with Josiah and I missed the fall show as we were at SickKids.  Well, my friend showed up today with a mug that she had bought for me at the show.  Wow!  Another friend came by tonight and helped get me get out of the house for the first time since returning to Kitchener.  I am blessed to have such wonderful and thoughtful friends.  

Our shift nurse said that he held Josiah too much yesterday as his back was hurting him last night.  Today we tried Josiah in our carrier and this worked well.  Our nurse was happy to give his arms a break.

We received a call from one of our awesome nurse practitioners at SickKids.  She was just checking in to find out how we were doing.  It was nice to hear her voice. 

We had been thinking that Josiah's NG tube was migrating a little but we discovered tonight that it has moved two inches out of his nose.  We can still hear the pop a little (when we are preparing to give his meds) so we're praying that it doesn't move any more until we can go to our outpatient clinic at the local hospital tomorrow morning, preferably after his 9:00 AM feed.  That way we'll have a two hour window before his next feed and medications are due.  They will insert the tube and then give Josiah an x-ray to ensure that the tube is in the correct place.


Josiah enjoyed tasting sweet potato today.  He was a beautiful mess.  I'm not making the food like I did with Isaac and the jars only last three days so we'll have sweet potato for the next couple of days and then we'll move on to blueberries or squash.  It's nice to see him take interest in food.

It's time to head to bed.  Our wonderful God supplies all our needs.  Thank you for blessing us by reading this blog and praying.  He hears you.

Blessings,

Elizabeth

A fussy night and day

Josiah had a fussy night last night.  Actually, Isaac woke up for some reason in the middle of the night (this is rare for him) so Graham tended to him and I stayed with Josiah.  Isaac had a great day today but Josiah was hard to settle throughout the day, though he did give what appeared to be belly laughs shortly before he went to sleep tonight.  Graham was blessed to be able to attend Sarah Tapley's life celebration today.    

When Josiah is fussy and upset, his sats go down so we often give him blow by which means we hold an oxygen mask close to his face at a rate of six to eight litres of oxygen per minute.  We've been doing this more often so we ordered more tanks this morning.  We didn't hear the delivery person at the door but thankfully they left the tanks outside which we were alerted to when my parents arrived to take Isaac to the library.  Isaac and Josiah are so blessed to have four incredible grandparents. 

Isaac actually asked to go to the potty today and he knew how to perform when he got there.  Of course he later peed in the bathtub but it looks like we might be getting somewhere. 

We were blessed with visits from family and friends today.  We're looking forward to having a good night's sleep and a great day tomorrow! 

Blessings,

Elizabeth

A day full of blessings

This morning we tried Josiah in the swing again and he liked it - he actually fell asleep in it.  It's so nice to have another place to put him that he enjoys.  He had one extra dose of morphine this morning after his breathing changed and he wouldn't settle but the rest of the day he was relatively calm.

We were so blessed with food and treats and amazing gifts for Isaac today.  A Sunday School class sent us some of their leftover treats and lo and behold there was what I call my favourite square, a square that I used to make with my mom when I was little.  That was a lovely surprise.  Actually I don't think I've met a square that I don't like. 

Isaac enjoyed church and even had a nap on his uncle which was not surprising given that he awoke just after 5:00 AM.  Thankfully he still napped this afternoon.  Today he was brought a big monkey and some very cool cardboard animals that he was excited to put together with Daddy.  In the box that held these animals, there was also a very tiny toy camera and a larger wooden key.  He loved both of these.  He was taking our pictures and putting the key in the door. 

After Isaac returned from the evening service my mom took out a Noah's Ark wall hanging and a Noah's Ark quilt that a couple from church kindly passed on to her for Isaac.  Isaac was very excited by the quilt.  He immediately put it down on the ground in our living room and lay on it.  Then he took it straight to his room where he put it on his bed.  He is sleeping peacefully underneath it.  The funny thing is, I randomly stumbled across some Noah's Ark quilts on Kijiji today and thought to myself that Isaac would love one.  It always seems extra special when God answers the desires of our hearts before we even utter a prayer.  People are so kind and generous.   

We had good times with family and friends today. 

We realized today that we haven't updated you on Graham's plans.  He applied for the Family Medical Leave so he will be off of work until the second week of January.  This time together is an amazing gift.

Thank you so much for your prayers and support.

Blessings,

Elizabeth

Saturday

There was more snow outside this morning.  The ice on the trees looked beautiful.  It's gone now.

We gave Josiah extra morphine again today due to his laboured breathing as well as the additional PEG for his bowels and Benadryl for his itchiness, two side effects of the morphine.  So today he was extra sleepy but he had lots of cuddles with Mommy and Daddy, Grandma and Grandpa F., and Uncle A.  We don't have shift nursing on the weekend but the RN dropped in to see Josiah and heplock his picc line.  We were thankful to have grandparents around as they helped with laundry, putting delicious leftovers on the table, and playing with Isaac and Josiah, thus allowing us to have some extra sleep,  buy some groceries, and organize a few things.

It's nice to see Josiah calm but I can't stop the voice in my head that says, "A baby shouldn't be in the crib that much ...  he shouldn't be watching a dvd in his crib ... he should smile more ... he shouldn't be so tired ....  he shouldn't need to work hard to breath ....         

Isaac said his full name for the first time today:  Isaac Kenneth Russell Faulkner.  He also rewarded my potty efforts but as I was clapping to congratulate him he let me know that I should be reading to him instead.  Isaac now likes to pose for pictures so Grandma F. said we should call him Isaac Bieber after which he immediately started saying, "Isaac Bieber."      

We were blessed with a beautiful gift basket from Grandma F.'s Coffee Break Bible study group.  We've had our chocolate fix today!


Isaac will go to church in the morning with Grandma and Grandpa L. and be home for lunch and a nap.  While we miss our church family, we are not ready to take Josiah where there are lots of people and we are also not comfortable only having one person with him at home. 


We are hoping to visit a photographer's studio in the near future.  The photographer volunteers with Now I Lay Me Down to Sleep.  We were put in contact with her through the palliative care team.

Good night and thank you for your continued prayers.

Blessings,

Elizabeth and Graham 

Daily Doses, Daily Blessings

We've been blessed to have more visitors the last couple of days.  It's nice to reintroduce Josiah to family and friends.  A cousin came by yesterday and we put her to work holding Josiah and then playing with Isaac.  She had great timing as our shift nurse was not available yesterday (we certainly missed him).  Caring for Josiah is certainly doable by one person, except when he is very fussy and desats and won't be consoled.  Then we find that one person needs to hold him and try to calm him down while the other person prepares medications.  It's always nice when Isaac is also calm and preoccupied at these times.  The case manager suggested that we explain to Isaac that there will be times when both mommy and daddy need to be with Josiah and won't be able to be with Isaac and to think of something special he can do at those times.  We're still thinking about what that could be.

A huge thank you to the Gardecki family who sent a comment about the NG tube extension.  We actually had these extensions from CCAC but we didn't know what they were!  Our feeding bag is the Kangaroo one (purple).  The extension is a different brand but it is working really well and we are thankful that we don't need to use tape anymore.  Thank you SO much for your comment and of course for your prayers!     

We gave Josiah two extra doses of morphine today in addition to his regular two doses.  That meant that he was itching his eyes more tonight so we gave benadryl.  We also gave him PEG again at lunchtime but he still hasn't had a BM. 

We haven't put the sat monitor on Josiah for the last couple of days which tells me that we're feeling more comfortable and we are less anxious when he is upset.  I think we're always going to find the morphine decision a little difficult.  Tonight I was in his room flushing his NG tube and I looked up at his face and saw that his nasal prongs were on top of his nose and thus he was not getting any oxygen.  I'm assuming that he would eventually start crying without any oxygen which would alert us to the problem but we decided to put the sat monitor on him tonight.  Hopefully removing his nasal prongs is not his new trick.

The Occupational Therapist and Speech and Language Therapist came today.  The SLT focuses on swallowing.  Josiah had a food tasting session while they observed.  He had some rice cereal which enjoyed tasting for a few minutes.  We can try this every day and we'll see if he would like something tastier to try.  You may remember that he had also done this at SickKids.  The OT came to see Josiah for the first time last week and asked that we put off trying oral foods until the SLT could come as they hadn't assessed him.  Josiah passed the test with flying colours.        

I've actually slept in my own bed the last two nights!  Last night he didn't cry from when I left him around 12:45 AM until around 5:30 AM.  He goes down for the night around 7:00 PM after his enoxaparin shot but he often cries out a number of times.  What a blessing to see him sleeping more peacefully! 

I thought I'd give you a little idea of our schedule in case you're wondering what we do.  We have our alarms set to go off all day long so that we don't forget his feeds and meds.  Typically Josiah has woken up shortly after 5:00 AM.  These last couple of mornings he has woken up very happy with lovely smiles.  We boil the kettle to start heating up his frozen milk around 5:40.  His first medications and feed are at 6:00 AM.  Sometimes he's fussy and presumably hungry before 6:00 AM which is when one person needs to hold Josiah and the other person works on his meds and milk.  First we need to check that the NG tube is in the correct place in his stomach by putting air in a syringe and pushing it quickly through the NG tube while listening to his stomach with a stethoscope.  We should hear a "pop" if it's in the correct place.  We do this every time we use the tube.

Josiah feeds every three hours until 12:00 AM.  A feed lasts around half an hour and we need to remember about fifteen minutes into the feed to move the tube because it works by gravity.  We flush the tube with water at the end of the feed. In total, without any additional medications such as Tylenol or Benadryl or extra morphine, there are eleven times during the day that we need to access the line and this involves giving eleven different medications and using 40 syringes.  Whenever we want to give him an extra medication at a non-feed time, it involves three syringes: one to check the pop, one for the medication, and one for a flush.  We have a system of baggies that I prefill with syringes each night.  Someone asked me how long it takes so I timed myself tonight and it only takes five minutes.  One of us cleans the syringes from the day in the evening and we put them together the next morning.  We love our system.
  
We've decided that this would be a great time for Isaac to start sitting on the potty!  Back in July when he sat on the potty for the first time he peed right away to my delight but this time he's just happy to sit there while we sing songs from a song book.  Well, mommy sings and he looks at the pages.  You can picture me sitting beside him singing old favourites like "Only a Boy Named David," and "The Wise Man Build His House Upon the Rock" until I decide it's time for us to wash our hands.   

We've been blessed with tremendous support from our family, friends, church family, various other churches, and strangers.  This is a time of relative peace right now for which we are so thankful to Jesus.  This time is a blessing.

Blessings,

Elizabeth 

Grieving with those who grieve

Our hearts were deeply saddened today to learn that Sarah Tapley, the amazing 11-year-old daughter of Graham's cousins Matt and Lisa Tapley, went to be with Jesus today.  As Matt said on his Twitter account: "Sarah was brave and strong and a FIGHTER all the way. Our lives are so much better for having her for the time she was with us."  Well said.

Our thoughts and prayers are with them tonight.


Blessings,

Graham and Elizabeth

The swing is for Baby

Isaac fell asleep easily tonight.  We've instituted a new rule:  no wrestling with mommy right before bedtime.  I'm not sure what I was thinking yesterday apart from thoroughly enjoying him jumping onto me and laughing.  It makes me laugh just thinking about it.

This morning Isaac kept calling mommy and then daddy from the living room.  I have been trying to teach him to come and find us rather than yelling our names (usually we are within sight of him when he's yelling).  I was holding Josiah so I told Isaac to come and find me.  He kept yelling so I finally came out and found him sideways on the baby swing that was swinging very fast.  I think he was a little scared but certainly not petrified.  I saved him and hugged him and kissed him and then we both had a good laugh.  I'm actually quite impressed that he was able to turn it on and climb onto it.  The swing is unplugged and Isaac knows it's for "Baby".  I will try to respond more promptly when he calls.   

Josiah had some nice play times today.  Here's a video that Grandpa Faulkner took.  I was sleeping when this was taken and I think he looks better than he did all day.  Grandpa therapy does wonders.   

   

The nights are a little blurry for me.  Josiah keeps waking up and crying from time to time.  It's great that it doesn't take long for him to settle but it disrupts our sleep and usually one of us ends up just staying in his room.  I think it seems like he's in somewhat of a dream state when he's crying.  I hope he's not having bad dreams.  With the shift nursing here during the day, both Graham and I are able to find time to nap so we really don't feel exhausted most of the time.  It's nice when Isaac wakes up after Josiah's 6:00 feed.  He's done this once so far. 

We gave Josiah a stroller ride today in the house and he seemed to enjoy it.  He likes to look at everything as long as we keep him moving.  He's not a fan of doing his exercises so it's a little hard for me to know how much to challenge him in terms of tummy time, etc.  He is pulling his legs up and kicking them more which is nice to see.     

We had a good visit with our amazing case manager and nurse practitioner today.  KidsAbility had called this week regarding our referral but our case manager said Josiah should just stay in the home as opposed to doing outpatient appointments so if we need KidsAbility at a later date, CCAC will refer us then.  What an incredible blessing this is to us!

They reminded us that we have access to 24-7 nursing so if we ever have a question, they are available.  We also feel better knowing the process if God were to call Josiah suddenly.  We wouldn't need to go to the hospital at all.  They also encouraged us to give morphine whenever we think it could help Josiah. 

I just gave Josiah his 9:00 meds and feed.  He slept through it and even smiled in his sleep as he felt the meds go down his tube.  He doesn't always like the feel of the cold medications.  I was thinking how I was once hopeful that we would leave the hospital without an NG tube.  How horrible it would be to have to give all of these medications orally.

We were blessed with visits from all of the grandparents today.  We were also blessed with a delicious supper tonight.   

Thanks for all the prayer support!  It's always great to hear that people are praying for us.  God is giving us His peace.

Blessings,

Elizabeth

A Noah Sighting

Isaac loves the story of Noah's Ark.  (Well, at least he likes the children's version which tends to skip over the death and destruction part.)  Isaac went to the grocery store with his grandparents today and he was quite pleased to see Noah there.  Noah had a long white beard and happened to be wearing a big red suit.  I wonder if Isaac would like to get his picture taken with Noah.

Our shift nurse is very attentive to Josiah's needs.  It's great to be able to have a nap and know that someone is with Josiah.  An RN comes daily to hep lock Josiah's picc line and do a quick assessment.  We met the physiotherapist today and she gave us a few more ideas of things to do with Josiah and explained the suction machine (which thankfully he hasn't needed since we arrived home).  Tomorrow the CCAC case manager will visit along with a nurse practitioner who works with our paediatrician. 

Graham left the house to do some errands today.  He picked up some medical supplies and went to a pharmacy to get some assistance regarding one of Josiah's medications.  I ended up being by myself for a while with both boys as the nurse left for his lunchbreak.  I was thankful that Isaac didn't wake from his nap and Josiah was calm.  

Josiah had a few smiles today and lots of laundry.  The cap on the end of his NG tube came off a couple of times when Josiah was in his bed.  We've put some tape on it to help keep it closed.  These tubes are supposed to last a month but we access it so often for all the drugs we're giving him. 

We're hoping that everyone here has a good sleep tonight.  Isaac did not want to go to sleep and seemed to be wired.  We're going to try a new strategy tomorrow night.   

I have laundry to fold (I enjoy doing laundry) and a feed and medications to prep so I will say goodnight.  My knees and hand felt a little better today so I'm thankful for that. 

Thanks for your support and prayers!  God gives us His daily bread which sustains us. 

Blessings,

Elizabeth and Graham

Divide and Conquer

Life is never dull with two boys under two years old.  Elizabeth and I have adopted the "divide and conquer" mentality to keep things organized.  This morning Isaac decided to wake at 4:30 AM.  After I laid down with him he fell asleep again and didn't wake up until close to 7:00 AM.  This worked out well because at 5:30 AM Josiah was restless and Elizabeth needed my help getting his feed and meds.  By the time Isaac woke up we thankfully were back on our routine.

At 8:00 AM the new shift nurse came for the day.  It turns out he too has a new baby at home, so he is mindful of our need for sleep, and encouraged us both to take naps during the day when we could.  He was a quick learner, and adopted our "system" for how we have organized the meds and feeds.  Elizabeth came up with a good system, and it is running like clock work. 

Elizabeth's parents came after breakfast and took Isaac to the library.  He absolutely loves books, so trips to the library are a special treat.  They returned mid-morning when the RN and her trainee had just arrived to change the dressing for Josiah's PICC line.  Our little home is certainly seeing its share of traffic these days, but thankfully it hasn't felt too crowded yet.

This afternoon we had visits from members of the prayer team at WPA.  It was great to see familiar faces and to agree in prayer for Josiah's healing.

Shortly after they left the CCAC dietitian came for a visit.  She weighed Josiah and took his length.  He is 7.9 kg (17.4 lbs), which explains why he feels heavy to hold these days!  Josiah is definitely more cuddly recently, and often prefers being held standing up.  However, today he did have some nice sleeps in my arms while I sat in the La-Z-Boy.  I must confess I also dozed off during those times too.

Elizabeth tried getting Josiah in the stroller this evening in order to walk him around the house, but he wasn't a fan so we had to cut that activity short.  Perhaps tomorrow he'll be in the right mood to try again. 

We enjoyed delicious leftovers from the various meals people have provided over the last few days.  Thanks to those who made the meals -- you know who you are. =)

This evening Isaac went to bed pretty well, and Josiah has had a calm night so far.  We are praying for a peaceful night and morning, so that we are ready for tomorrow's visit from the physiotherapist, RN, and shift nurse, and whomever else enters these doors.  We are thankful for every moment we have with our boys and are so blessed to be living in Ontario where we have the support systems we need for this time. 


Thanks everyone for your prayers and encouraging words.

Blessings,

Graham

Settling in

Mommy and her boys

I ended up sleeping in Josiah's room again last night after starting out in my own bed.  He needed some morphine in the night.  I have high hopes for a good sleep tonight.  He cries out a lot but he is often able to go back to sleep.  A potential side effect of one of his drugs is vivid dreams or nightmares.  We hope his sleep is not disturbed by any fear.  It's always sad to see fear in his eyes.   

Josiah has wanted to be held and cuddled more the last couple of days.  I assume his body has adjusted to being held upright.  He prefers to be held while we are standing and rocking (just like Isaac did) but he sometimes lets us sit down with him.  It's nice to feel like we are able to give him some comfort in this way.  He also likes to grasp my hair with his fingers and put it in his mouth.  He'll often be soothed if I give him my hair when he's crying.  This is a gift to me as he won't take a soother and I can't nurse him to comfort him. 

Graham and I both had naps today which helped.  This morning while Isaac was enjoying church Josiah had his daily visit with the nurse.  We then gave Josiah a bath and put him in the swing which he didn't enjoy.  He spent some time in his chair and on his mat though he was fussier today.  He also slept in both mom and dad's arms.  It just takes the right number of bottom pats to calm him down. 

Yesterday, the last of the gentian violet came off his lips.  He still has some under his fingernails but it's nice that his face isn't purple any more. 

We meet our day nurse tomorrow.  He is coming at 8:00 AM and staying until 4:00 PM.  This will be an interesting transition to say the least.  We're praying that it goes smoothly and that Josiah loves his nurses and that Isaac adjusts to having an extra person in the house.

It's time to get ready for bed before the next feed.  We missed being with our church family today.  We're not sure what our outings will look like but we're taking this one day at a time.  We certainly feel very loved and blessed.  Thank you for your prayers!

Blessings,

Elizabeth and Graham