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
Sunday, 23 December 2012
Saturday, 22 December 2012
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:
Blessings,
Graham
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:
- Josiah's PICC line removal on Monday - that everything goes smoothly and that there are no negative repercussions from the old clot
- Safe travel on Monday to and from SickKids
- Special Christmas Eve and Christmas Day with the boys and all their grandparents
- Ongoing wisdom regarding Josiah's day-to-day care
Blessings,
Graham
Friday, 21 December 2012
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
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
Thursday, 20 December 2012
A great day
 |
| Isaac and Josiah sharing a laugh |
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
Wednesday, 19 December 2012
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
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
Tuesday, 18 December 2012
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
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
Monday, 17 December 2012
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
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
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