Josiah slept well last night and awoke around 5:00AM. Isaac slept until just before 6:00AM. I sang a couple of songs to him while we watched the numbers change until the first number on the clock was a 6 and then he could go and see Daddy.
I was in the washroom when I heard Josiah cry just before 7:30AM. I then heard Graham's footsteps and shortly after there was pounding on the bathroom door. Josiah had pulled out his NG tube again. I had been wondering whether to wait a couple of weeks and get his tube changed at the hospital when he has his next RSV shots or change it myself as the tube has been in just over a month. He's a very helpful boy, answering my question for me. We gave him an hour of freedom from the tube and then I inserted a new one. I was a little worried that we might need to go to the hospital as I kept meeting resistance at the back of his nose but eventually I was able to get it in without resistance. Of course, he was crying the whole time but it didn't take him long to calm down afterwards.
Our new nurse is great and Josiah seemed to take to him right away. Thank You Lord! He has three children including an infant so he's used to babies.
The dietitian came this morning. Josiah has gained a lot of weight the last couple of weeks, approximately 40g per day. The nurse thought that some of that might be fluid retention but we're going to cut back on the amount of formula he's getting. His feeds will be the same volume but they will be less concentrated.
My parents were here this morning and then Graham's parents arrived late morning and stayed for the day. I was able to enjoy a nap after lunch.
Our pastor's wife dropped by to say hi and see Josiah. Josiah had another good day. He had time in the exersaucer again as well as time on his mat. Yesterday and today at dinner he showed interest in his toes. Yesterday it looked like he wanted to put his big toe in his mouth - I love seeing this interest. Grandpa F. commented on how much better Josiah seemed since the last time he saw him.
Isaac likes rhyming. We've encouraged him in this endeavour. He'll just say a word and then nonsense sounds that rhyme with that word. Well, I discovered this evening that some nice words rhyme with some inappropriate words. Isaac has no idea what he's saying but the sound is quite clear to anyone listening. There's a lot to learn when you're two. I'm really hoping he doesn't decide to show off his rhyming skills at church.
When Isaac has done something that he knows he shouldn't do, he'll often say, "Listen and obey" because he's heard that many times from his parents. Today, I took him to his room because he did something naughty and when we arrived he immediately climbed up on his chair saying, "Up on the chair." He knows the drill. It's a joy to watch him learning.
Graham and I enjoyed a yummy "fruit with chocolate sauce date" in the kitchen tonight.
Thanks so much for your prayers and support! We are blessed beyond measure. We love our boys.
Blessings,
Elizabeth
Romans 5:1
Therefore, since we have been made right in God's sight by faith, we have peace with God because of what Jesus Christ our Lord has done for us.
Thursday 28 February 2013
Wednesday 27 February 2013
Vaccine Day
Last night Josiah didn't sleep well but thankfully Isaac did. Josiah was content for most of his wakeful time but he didn't want to sleep. He had better naps today so that should help his sleep tonight.
We didn't have a nurse today. This was not our agency's intent but something fell through. We will meet our new nurse tomorrow morning. The grandparents will help out again tomorrow so that I can give him training in caring for Josiah. We did have our awesome evening nurse for a few hours tonight. She's going to come on Wednesday evenings for the month of March.
Josiah had an appointment with our family doctor for his six month vaccine (his hospital time threw off his vaccine schedule). My dad drove us to the appointment. Thankfully Josiah has not reacted negatively to the vaccine. My mom watched Isaac while we were out and my sister-in-law spent some time with both the boys.
I think Josiah likes getting out in the car, as long as the car is moving. He was well behaved at the doctor's office. He was quite sleepy from all the excitement and was falling asleep while eating his apricots. He is a good eater. I always enjoy feeding him.
The volunteer from the hospice came to hang out with Isaac this afternoon. He really enjoys being with her and is happy when I tell him she's coming.
It's time to say goodnight. Thanks for all the prayers, support, comments, and emails. We are blessed indeed.
Blessings,
Elizabeth
Romans 5:3
We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance.
We didn't have a nurse today. This was not our agency's intent but something fell through. We will meet our new nurse tomorrow morning. The grandparents will help out again tomorrow so that I can give him training in caring for Josiah. We did have our awesome evening nurse for a few hours tonight. She's going to come on Wednesday evenings for the month of March.
Josiah had an appointment with our family doctor for his six month vaccine (his hospital time threw off his vaccine schedule). My dad drove us to the appointment. Thankfully Josiah has not reacted negatively to the vaccine. My mom watched Isaac while we were out and my sister-in-law spent some time with both the boys.
I think Josiah likes getting out in the car, as long as the car is moving. He was well behaved at the doctor's office. He was quite sleepy from all the excitement and was falling asleep while eating his apricots. He is a good eater. I always enjoy feeding him.
The volunteer from the hospice came to hang out with Isaac this afternoon. He really enjoys being with her and is happy when I tell him she's coming.
It's time to say goodnight. Thanks for all the prayers, support, comments, and emails. We are blessed indeed.
Blessings,
Elizabeth
Romans 5:3
We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance.
Tuesday 26 February 2013
A wonderful day!
Josiah had a wonderful day. He was happy and alert. He ate well and played and smiled. He even enjoyed his exersaucer for fifteen minutes. He didn't moan today and the nurse practitioner said she'd never seen him like this. He usually sleeps in his grandparents' arms in the afternoon but today he was happy to listen to Grandpa's stories, songs, and prayers.
They kept saying in the hospital that Josiah didn't have much reserve. Perhaps I don't have much reserve. I didn't feel like I had much reserve when I opened the washing machine tonight and discovered that something had gone through the wash that shouldn't have. Oh, that happens more times than I care to say. I check pockets three times and it still happens! : ) Thank you for your prayers!
Blessings,
Elizabeth
Philippians 4:8-9
Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.
Monday 25 February 2013
Overalls and potty time
I actually forgot to post until now. We were in bed, praying before sleep, and I remembered that I needed to post. I find the late night feed more difficult when I've already been sleeping so it will be easier tonight.
Josiah had a pretty good day. He pulled off his face tapes this evening but I caught him before he did any damage and then I changed his tapes. Our new taping process is working better than our old one. It's not perfect but we're getting closer. A pharmacy called me back today and said they had found the pediatric arm restraints I'd asked about so I ordered a pair. I'm not sure how much it will change because I don't want him wearing them during the day but at least we won't have to wonder at night if he's going to pull out his tube or nasal prongs.
I pulled out a pair of overalls from the cupboard for Isaac to wear this morning. He immediately told me of a character in one of his books that wears overalls (Little Critter). I wish I had his memory. Isaac now has a Potty Time chart on the bathroom wall and stickers to use on it. He was very excited and tried to go on the potty two times in a row. We'll see if the excitement lasts until tomorrow.
We ate some delicious soup tonight for dinner. I think it was borscht. It reminded me of the borscht that my uncle made when I was a little girl.
It's time to say goodnight. Thanks so much for all of your prayers!
Blessings,
Elizabeth
Romans 3:22-23
We are made right with God by placing our faith in Jesus Christ. And this is true for everyone who believes, no matter who we are. For everyone has sinned; we all fall short of God's glorious standard.
Josiah had a pretty good day. He pulled off his face tapes this evening but I caught him before he did any damage and then I changed his tapes. Our new taping process is working better than our old one. It's not perfect but we're getting closer. A pharmacy called me back today and said they had found the pediatric arm restraints I'd asked about so I ordered a pair. I'm not sure how much it will change because I don't want him wearing them during the day but at least we won't have to wonder at night if he's going to pull out his tube or nasal prongs.
I pulled out a pair of overalls from the cupboard for Isaac to wear this morning. He immediately told me of a character in one of his books that wears overalls (Little Critter). I wish I had his memory. Isaac now has a Potty Time chart on the bathroom wall and stickers to use on it. He was very excited and tried to go on the potty two times in a row. We'll see if the excitement lasts until tomorrow.
We ate some delicious soup tonight for dinner. I think it was borscht. It reminded me of the borscht that my uncle made when I was a little girl.
It's time to say goodnight. Thanks so much for all of your prayers!
Blessings,
Elizabeth
Romans 3:22-23
We are made right with God by placing our faith in Jesus Christ. And this is true for everyone who believes, no matter who we are. For everyone has sinned; we all fall short of God's glorious standard.
Sunday 24 February 2013
Together at church
We made it to church today! It was wonderful to be there with Josiah. The last couple of Sundays Isaac has talked about Daddy, Mommy, Isaac, and Josiah being at church so Graham went to get Isaac from the toddler room after we arrived so that we could all be together and so Isaac could see his parents in church.
Isaac went to church with his grandparents but we brought him home with us and it was the first time we've all been in the car together since July. Until now I've always sat in the back seat to watch Josiah and make sure I can still hear the oxygen. Actually, in church Graham asked me to check the oxygen and for some unknown reason it had turned off even though the lever that turns it off the tank was not attached. It's a great reminder to keep listening for the oxygen.
I was able to get some big belly laughs out of Josiah this afternoon. I was throwing up a blanket and letting it come down over our heads and then I tickled Josiah's belly. He was ecstatic.
Thankfully, we were all able to have an afternoon nap. Isaac keeps us laughing. We asked him who should change his diaper. He put on his thinking face, looked above his head, thought about it and said, "Grandpa" (who wasn't here). At dinner time he was telling us that "His grace is enough" which we realized he remembered from singing at church. I asked him whose grace is enough and he answered, "Mommy's." Last night he went to sleep with underwear over top of his diaper. I guess we're making progress if he's at least interested in underwear.
About half an hour ago Josiah started crying and when we went to him he sounded congested and his sats plummeted. We gave him Ventolin and I clapped on his chest for five minutes. He hates the Ventolin mask. However, he sleeps peacefully as I clap on his chest. I always told him in the hospital that he was getting a massage when he had chest physio. He's sleeping now and his sats have risen.
It's time to say goodnight. Thank you so much for your prayers and support!
Blessings,
Elizabeth
Philippians 4:13
For I can do everything through Christ, who gives me strength.
Isaac went to church with his grandparents but we brought him home with us and it was the first time we've all been in the car together since July. Until now I've always sat in the back seat to watch Josiah and make sure I can still hear the oxygen. Actually, in church Graham asked me to check the oxygen and for some unknown reason it had turned off even though the lever that turns it off the tank was not attached. It's a great reminder to keep listening for the oxygen.
I was able to get some big belly laughs out of Josiah this afternoon. I was throwing up a blanket and letting it come down over our heads and then I tickled Josiah's belly. He was ecstatic.
Thankfully, we were all able to have an afternoon nap. Isaac keeps us laughing. We asked him who should change his diaper. He put on his thinking face, looked above his head, thought about it and said, "Grandpa" (who wasn't here). At dinner time he was telling us that "His grace is enough" which we realized he remembered from singing at church. I asked him whose grace is enough and he answered, "Mommy's." Last night he went to sleep with underwear over top of his diaper. I guess we're making progress if he's at least interested in underwear.
About half an hour ago Josiah started crying and when we went to him he sounded congested and his sats plummeted. We gave him Ventolin and I clapped on his chest for five minutes. He hates the Ventolin mask. However, he sleeps peacefully as I clap on his chest. I always told him in the hospital that he was getting a massage when he had chest physio. He's sleeping now and his sats have risen.
It's time to say goodnight. Thank you so much for your prayers and support!
Blessings,
Elizabeth
Philippians 4:13
For I can do everything through Christ, who gives me strength.
Saturday 23 February 2013
Menchies
With Isaac at his grandparents and a nurse here for Josiah this morning, Graham and I went out on the town. We went to Chapters, a Shawarma place and then we topped it off with Menchies. I confess, this was my first visit to Menchies but I am a fan. Actually, we were given a coupon for a free serving the morning I rushed Josiah to our local hospital on July 31st. It was worth the wait.
We were very happy to see Isaac again mid-afternoon. He had cuddles for both Mommy and Daddy. He is definitely his Daddy's boy. We read a parenting book when he was very young that told me he would be his Daddy's boy by 18 months so I'm glad I was prepared and I don't take it personally. He still has lots of cuddles for me.
A friend dropped by this afternoon. It's always wonderful to see her.
Josiah had an alright day. He had good cuddles with his nurse this morning and slept a lot of the day. He enjoyed cuddles with Grandma and Grandpa F. this afternoon. His face is puffy.
Thank you for your prayers and support!
Blessings,
Elizabeth
Hebrews 11:6
And it is impossible to please God without faith. Anyone who wants to come to him must believe that God exists and that he rewards those who sincerely seek him.
We were very happy to see Isaac again mid-afternoon. He had cuddles for both Mommy and Daddy. He is definitely his Daddy's boy. We read a parenting book when he was very young that told me he would be his Daddy's boy by 18 months so I'm glad I was prepared and I don't take it personally. He still has lots of cuddles for me.
A friend dropped by this afternoon. It's always wonderful to see her.
Josiah had an alright day. He had good cuddles with his nurse this morning and slept a lot of the day. He enjoyed cuddles with Grandma and Grandpa F. this afternoon. His face is puffy.
Thank you for your prayers and support!
Blessings,
Elizabeth
Hebrews 11:6
And it is impossible to please God without faith. Anyone who wants to come to him must believe that God exists and that he rewards those who sincerely seek him.
Friday 22 February 2013
More PEG
Today was a good day. Josiah had two BMs early this morning and had a lot of play time on his mat. He was in a much better mood for most of the day and gave away some smiles. Thankfully he has tolerated his new formula well. My sister-in-law took me out for a lovely breakfast and then we did some errands so it was a treat to be out of the house for the morning.
The visiting nurse came this afternoon. She texted our nurse practitioner who then increased Josiah's PEG dose to almost double the current amount. That should help keep him regular. She'll fax our paediatrician on Monday to see if we should increase Josiah's diuretic medications. I had a rest later in the afternoon which must have given me energy to clean the bathtub and mop the floors, my two least favourite chores.
I look forward to giving Isaac a big hug and lots of kisses tomorrow afternoon. FaceTime just doesn't cut it.
It's late so I'll say goodnight. Thank you for your prayers and support.
Blessings,
Elizabeth
Psalm 33:4
For the word of the Lord holds true, and we can trust everything he does. He loves whatever is just and good; the unfailing love of the Lord fills the earth.
The visiting nurse came this afternoon. She texted our nurse practitioner who then increased Josiah's PEG dose to almost double the current amount. That should help keep him regular. She'll fax our paediatrician on Monday to see if we should increase Josiah's diuretic medications. I had a rest later in the afternoon which must have given me energy to clean the bathtub and mop the floors, my two least favourite chores.
I look forward to giving Isaac a big hug and lots of kisses tomorrow afternoon. FaceTime just doesn't cut it.
It's late so I'll say goodnight. Thank you for your prayers and support.
Blessings,
Elizabeth
Psalm 33:4
For the word of the Lord holds true, and we can trust everything he does. He loves whatever is just and good; the unfailing love of the Lord fills the earth.
Thursday 21 February 2013
A few visitors
Josiah's day today was similar to yesterday. He woke up coughing but he didn't cough too much throughout the day. He slept quite a lot in his crib and the stroller but he also ate three times at the table. Thankfully a stroller ride still calms him down. He hasn't had a BM for the last two days so he must be uncomfortable. I think he's appreciating the larger dose of morphine. He was in the exersaucer today for around five minutes. It's probably not the most comfortable position for him but I think he likes the new perspective with things to look at and touch.
It was nice to be able to rest today. The dietitian came this afternoon and gave me the instructions for preparing his milk and formula. I'll prepare the day's supply once a day. Please pray that Josiah tolerates the formula.
The case manager also came to visit. She is lovely. It was nice to chat with her.
Josiah enjoyed cuddles with his Grandma and Grandpa L. this afternoon. He's sleeping peacefully now.
I had a short walk in the cold today. It was good to be outside and to stretch my legs. We saw Isaac on FaceTime. He's having a great time. We're praying that he sleeps through the night.
Thank you very much for your prayers and support!
Blessings,
Elizabeth
Psalm 16:11
You will show me the path of life;
In Your presence is fullness of joy;
At Your right hand are pleasures forevermore.
It was nice to be able to rest today. The dietitian came this afternoon and gave me the instructions for preparing his milk and formula. I'll prepare the day's supply once a day. Please pray that Josiah tolerates the formula.
The case manager also came to visit. She is lovely. It was nice to chat with her.
Josiah enjoyed cuddles with his Grandma and Grandpa L. this afternoon. He's sleeping peacefully now.
I had a short walk in the cold today. It was good to be outside and to stretch my legs. We saw Isaac on FaceTime. He's having a great time. We're praying that he sleeps through the night.
Thank you very much for your prayers and support!
Blessings,
Elizabeth
Psalm 16:11
You will show me the path of life;
In Your presence is fullness of joy;
At Your right hand are pleasures forevermore.
Wednesday 20 February 2013
A better day
Today was a pretty good day for Josiah. He woke up coughing this morning but he didn't cough much throughout the day. We've been giving him two mL of morphine with his feeds the last two days (from 6AM to 6PM).
The OT and speech and language pathologist were here today. We tried Josiah in an exersaucer and he seemed interested though he didn't last there long. We'll keep trying for a few minutes a couple of times a day. If he can tolerate it, it should also help increase his core strength. He has a pillow under his feet and blankets around his upper body to help with stability.
We also tried giving Josiah a little milk on a spoon. It seemed like a miniscule amount of milk but he took it happily and swallowed it. We'll do this a few times a day until he is used to it before adding more milk on the spoon.
I think we'll try to track Josiah's sleep times to see his patterns so we can work out more of a schedule. This would be helpful for any new nurses.
I was trying to rock and cuddle Josiah around 4:00 PM. He wasn't too interested until Grandpa L. showed up for his regular cuddle and prayer time with Josiah. Josiah contently watched his face and listened to him singing and then fell asleep.
This evening Josiah decided to keep a soother in his mouth for a while. He's only ever gnawed on a soother before but this time he actually sucked on it a little and kept it in his mouth. It's only taken 10 months (probably the time when most people get rid of their soother). Isaac never had a soother.
I was extra tired today but I was able to rest due to help from our incredible family members. Last night I gave Josiah his 12:00 AM feed and then I fell asleep and missed my 12:30 AM alarm and woke up at 1:30 AM and then finished his feed.
Grandma and Grandpa F. came and picked up Isaac today and took him to their home. He was happy to go. We saw him tonight on FaceTime and he had enjoyed a great afternoon of playing.
We had a delicious dinner tonight. Friends from church brought it and we had dinner together. It was so lovely to have a visit with them.
It's time to say goodnight. Thank you so much for your prayers and support!
Blessings,
Elizabeth
Isaiah 50:10
Who among you fears the Lord and obeys his servant? If you are walking in darkness, without a ray of light, trust in the Lord and rely on your God.
The OT and speech and language pathologist were here today. We tried Josiah in an exersaucer and he seemed interested though he didn't last there long. We'll keep trying for a few minutes a couple of times a day. If he can tolerate it, it should also help increase his core strength. He has a pillow under his feet and blankets around his upper body to help with stability.
We also tried giving Josiah a little milk on a spoon. It seemed like a miniscule amount of milk but he took it happily and swallowed it. We'll do this a few times a day until he is used to it before adding more milk on the spoon.
I think we'll try to track Josiah's sleep times to see his patterns so we can work out more of a schedule. This would be helpful for any new nurses.
I was trying to rock and cuddle Josiah around 4:00 PM. He wasn't too interested until Grandpa L. showed up for his regular cuddle and prayer time with Josiah. Josiah contently watched his face and listened to him singing and then fell asleep.
This evening Josiah decided to keep a soother in his mouth for a while. He's only ever gnawed on a soother before but this time he actually sucked on it a little and kept it in his mouth. It's only taken 10 months (probably the time when most people get rid of their soother). Isaac never had a soother.
I was extra tired today but I was able to rest due to help from our incredible family members. Last night I gave Josiah his 12:00 AM feed and then I fell asleep and missed my 12:30 AM alarm and woke up at 1:30 AM and then finished his feed.
Grandma and Grandpa F. came and picked up Isaac today and took him to their home. He was happy to go. We saw him tonight on FaceTime and he had enjoyed a great afternoon of playing.
We had a delicious dinner tonight. Friends from church brought it and we had dinner together. It was so lovely to have a visit with them.
It's time to say goodnight. Thank you so much for your prayers and support!
Blessings,
Elizabeth
Isaiah 50:10
Who among you fears the Lord and obeys his servant? If you are walking in darkness, without a ray of light, trust in the Lord and rely on your God.
Tuesday 19 February 2013
Lungs clear
We're thanking God for BMs today! In case you were wondering, Josiah had three of them. He went four days without having any. We've changed our system slightly to help prevent him missing his PEG again.
The visiting nurse was here today. She said that Josiah's lungs sound clear. He was still coughing today from time to time. She suspects that Josiah's veins are narrowing. He is arching his back more.
Isaac and I went to the library program today. It's nice to be there with him. Our oxygen tanks were delivered today.
It's always interesting to look at the dates written on Josiah's milk containers. We just started our last box yesterday so we'll start mixing it with formula to help the transition. Today I noticed the date of his first surgery with the time of 6:30 AM. We arrived early at the hospital that day and then I pumped before he was taken for his surgery.
I'll say goodnight now. Thanks so much for your continued prayers and support. We're so thankful that God promises to never leave us or forsake us. I read tonight that when the disease (pulmonary vein stenosis) progresses, one of the symptoms can be pain in the chest. That's just one of the bad symptoms but I'm praying that Josiah would be free from chest pain. I'm very thankful he's sleeping through the night.
Blessings,
Elizabeth
2 Peter 1:3
By his divine power, God has given us everything we need for living a godly life. We have received all of this by coming to know him, the one who called us to himself by means of his marvelous glory and excellence.
The visiting nurse was here today. She said that Josiah's lungs sound clear. He was still coughing today from time to time. She suspects that Josiah's veins are narrowing. He is arching his back more.
Isaac and I went to the library program today. It's nice to be there with him. Our oxygen tanks were delivered today.
It's always interesting to look at the dates written on Josiah's milk containers. We just started our last box yesterday so we'll start mixing it with formula to help the transition. Today I noticed the date of his first surgery with the time of 6:30 AM. We arrived early at the hospital that day and then I pumped before he was taken for his surgery.
I'll say goodnight now. Thanks so much for your continued prayers and support. We're so thankful that God promises to never leave us or forsake us. I read tonight that when the disease (pulmonary vein stenosis) progresses, one of the symptoms can be pain in the chest. That's just one of the bad symptoms but I'm praying that Josiah would be free from chest pain. I'm very thankful he's sleeping through the night.
Blessings,
Elizabeth
2 Peter 1:3
By his divine power, God has given us everything we need for living a godly life. We have received all of this by coming to know him, the one who called us to himself by means of his marvelous glory and excellence.
Monday 18 February 2013
Happy Family Day!
We had a good Family Day today. It was great to see all the grandparents and Isaac and Graham had fun at the birthday party. Graham's parents were here helping out most of the day. Isaac was asking about going to their house so they'll take him there on Wednesday when they need to be back in Kitchener. He's a blessed little boy with three beds he calls his own at three different houses.
Isaac was making us all laugh at dinner with his imitation of something his grandpa did. In the afternoon he asked for a cookie. I said he could have one after he ate some apple. When I was out of the room he asked Grandma for a cookie and she repeated my instructions. Isaac replied, "Grandma eat Isaac's apples" so that he could get his cookie but Grandma did not comply.
Josiah woke up coughing this morning and coughed at various times during the day, but not regularly or too often. We'll have to wait and see if this is "just" another cold or something to do with his veins. It will be good to have the visiting nurse assess him tomorrow. He had three doses of Ventolin today and I used the "cup" on his chest to help move the secretions in his lungs. Turning him from side to side when he's in the crib also helps with this.
We actually just discovered that Josiah was without oxygen for over an hour tonight. I realized that I couldn't hear any sounds when I put my ear to Josiah's face. Thankfully we discovered this problem before he went all night or longer without oxygen. We switched his line to the oxygen tank and then fixed the problem with the oxygen concentrator. God is watching over Josiah.
We were blessed to be together today on Family Day. Thank you for your prayers and support!
Blessings,
Elizabeth
1 Thessalonians 5:16-18
Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus.
Isaac was making us all laugh at dinner with his imitation of something his grandpa did. In the afternoon he asked for a cookie. I said he could have one after he ate some apple. When I was out of the room he asked Grandma for a cookie and she repeated my instructions. Isaac replied, "Grandma eat Isaac's apples" so that he could get his cookie but Grandma did not comply.
Josiah woke up coughing this morning and coughed at various times during the day, but not regularly or too often. We'll have to wait and see if this is "just" another cold or something to do with his veins. It will be good to have the visiting nurse assess him tomorrow. He had three doses of Ventolin today and I used the "cup" on his chest to help move the secretions in his lungs. Turning him from side to side when he's in the crib also helps with this.
We actually just discovered that Josiah was without oxygen for over an hour tonight. I realized that I couldn't hear any sounds when I put my ear to Josiah's face. Thankfully we discovered this problem before he went all night or longer without oxygen. We switched his line to the oxygen tank and then fixed the problem with the oxygen concentrator. God is watching over Josiah.
We were blessed to be together today on Family Day. Thank you for your prayers and support!
Blessings,
Elizabeth
1 Thessalonians 5:16-18
Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus.
Sunday 17 February 2013
Sunny skies
It was not a great day for Josiah. We were hoping to all go to church but he was inconsolable for a long time this morning and after he finally fell asleep we weren't willing to wake him. Isaac went with his grandparents and then Graham went a little later. Josiah hasn't had a BM since Friday morning. We're wondering if he could have missed his dose of PEG on Friday. Please pray that he will be able to go soon.
It wasn't a very eventful day. I received a phone call to let me know that our nurse is sick and therefore won't be coming tomorrow. Tomorrow is Family Day so Graham is off work. We were all planning to go to a birthday party for our friends' son who is Isaac's age. As long as Isaac is still healthy in the morning, he will go with Graham to the party. I'm sure Isaac will have a great time. It would be nice to see him having fun with other children.
It's fun to listen to Isaac pray before meals. He puts his hands together and starts with "Dear God" followed by unknown words along with recognizable ones like "play toys" and "water cup" depending on what has been happening. Then Graham or I give him words to say at the end.
We enjoyed a delicious supper tonight. It was lovely to see the sunny skies today.
It's time to say goodnight. Thank you for prayers!
Blessings,
Elizabeth
Ephesians 3:19
May you experience the love of Christ, though it is too great to understand fully. Then you will be made complete with all the fullness of life and power that comes from God.
It wasn't a very eventful day. I received a phone call to let me know that our nurse is sick and therefore won't be coming tomorrow. Tomorrow is Family Day so Graham is off work. We were all planning to go to a birthday party for our friends' son who is Isaac's age. As long as Isaac is still healthy in the morning, he will go with Graham to the party. I'm sure Isaac will have a great time. It would be nice to see him having fun with other children.
It's fun to listen to Isaac pray before meals. He puts his hands together and starts with "Dear God" followed by unknown words along with recognizable ones like "play toys" and "water cup" depending on what has been happening. Then Graham or I give him words to say at the end.
We enjoyed a delicious supper tonight. It was lovely to see the sunny skies today.
It's time to say goodnight. Thank you for prayers!
Blessings,
Elizabeth
Ephesians 3:19
May you experience the love of Christ, though it is too great to understand fully. Then you will be made complete with all the fullness of life and power that comes from God.
Saturday 16 February 2013
Feeding schedule
A cousin came over today and spent the day playing with Isaac and helping out. Graham and I were both able to have a nap and then we enjoyed the delicious supper she made. Isaac had a lot of fun and it was great to see her. What a blessing!
Josiah's new feeding schedule is now officially the old schedule. He wasn't happy most of the day and he didn't eat solid food. This was the first time that he's been offered lunch and he refused it. Perhaps we're not giving it much of a chance but it's just not worth it. The three-hour schedule works fine and we want him to be comfortable. I will enjoy going to bed earlier tonight.
He's sleeping peacefully now.
Early this morning I taught Isaac this new saying: "Screaming is not an option." I'm hoping he remembers this saying tomorrow morning. We're also working on, "Whining is not an option." He's such a delightful boy but there's a lot to learn when you're two.
Thank you for your prayers and support.
Blessings,
Elizabeth
Ephesians 3:20
Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.
Josiah's new feeding schedule is now officially the old schedule. He wasn't happy most of the day and he didn't eat solid food. This was the first time that he's been offered lunch and he refused it. Perhaps we're not giving it much of a chance but it's just not worth it. The three-hour schedule works fine and we want him to be comfortable. I will enjoy going to bed earlier tonight.
He's sleeping peacefully now.
Early this morning I taught Isaac this new saying: "Screaming is not an option." I'm hoping he remembers this saying tomorrow morning. We're also working on, "Whining is not an option." He's such a delightful boy but there's a lot to learn when you're two.
Thank you for your prayers and support.
Blessings,
Elizabeth
Ephesians 3:20
Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.
Friday 15 February 2013
Tired
I was very tired today. When I'm tired, I'm more emotional. The tears came a couple of times as I thought of Josiah and held him in my arms. There is always hope. If God does decide to take my sweet boy to be with Jesus, I don't want to spend his final moments and days just wishing for a different way. I want to tell Josiah of the amazing God whom He will meet and how he won't know pain or oxygen hunger or NG tubes or face tape ever again. I want to thank God for the amazing gift of Josiah.
I had a lunch date with Graham today while Isaac was with my parents. We went to a Thai restaurant we haven't been to before. It was nice to be together (it was a little nicer after I had eaten something as I get a little grumpy on an empty stomach).
Josiah had extra morphine today. His favourite times of the day seem to be when he wakes up (especially if it is the middle of the night), when he is eating at the kitchen table, and when he is sleeping in his grandparents' arms - often in the late afternoon.
I had a nice little gift last night. I heard Josiah's alarm go off so I went to his room while he was having his late night feed. I think the problem was something to do with his heart rate. Anyway, for some reason his oxygen sats were high. They actually rose to 87 with an apparently good signal for about three minutes before they sank again to 65. It was just really nice to see. Thanks Lord!
I trust God. I believe I find it quite easy to trust Him. I know He is in control and loves me and my family and will bring good out of bad. I know He is able to heal, though I don't know the bigger picture that Josiah's story plays into and I don't know the plans and purposes that are being accomplished. God will be glorified in this situation and I want Him to be. However, this doesn't mean that I know God to the extent that I would like to know Him or that I love Him in the way that I want to love Him. My trust in Him may make it appear that I am closer than I am.
It's time to say goodnight. Thank you so much for your prayers and support. Your love makes a difference!
Blessings,
Elizabeth
Ephesians 5:1-2
Imitate God, therefore, in everything you do, because you are his dear children. Live a life filled with love, following the example of Christ. He loved us and offered himself as a sacrifice for us, a pleasing aroma to God.
I had a lunch date with Graham today while Isaac was with my parents. We went to a Thai restaurant we haven't been to before. It was nice to be together (it was a little nicer after I had eaten something as I get a little grumpy on an empty stomach).
Josiah had extra morphine today. His favourite times of the day seem to be when he wakes up (especially if it is the middle of the night), when he is eating at the kitchen table, and when he is sleeping in his grandparents' arms - often in the late afternoon.
I had a nice little gift last night. I heard Josiah's alarm go off so I went to his room while he was having his late night feed. I think the problem was something to do with his heart rate. Anyway, for some reason his oxygen sats were high. They actually rose to 87 with an apparently good signal for about three minutes before they sank again to 65. It was just really nice to see. Thanks Lord!
I trust God. I believe I find it quite easy to trust Him. I know He is in control and loves me and my family and will bring good out of bad. I know He is able to heal, though I don't know the bigger picture that Josiah's story plays into and I don't know the plans and purposes that are being accomplished. God will be glorified in this situation and I want Him to be. However, this doesn't mean that I know God to the extent that I would like to know Him or that I love Him in the way that I want to love Him. My trust in Him may make it appear that I am closer than I am.
It's time to say goodnight. Thank you so much for your prayers and support. Your love makes a difference!
Blessings,
Elizabeth
Ephesians 5:1-2
Imitate God, therefore, in everything you do, because you are his dear children. Live a life filled with love, following the example of Christ. He loved us and offered himself as a sacrifice for us, a pleasing aroma to God.
Thursday 14 February 2013
Happy Valentine's Day!
The dietitian was here this morning. She weighs and measures Josiah. He has lost a little weight since she was here a couple of weeks ago. It didn't dawn on me at the time but I later remembered that we didn't feed him solids for a week when he was sick so I suspect that's part of the reason he lost a little weight.
I asked her about giving Josiah milk every three and a half hours and she is fine with us trying that. We'll start this Saturday. This will allow me to start his last feed at 11:30 PM instead of 12:00 AM so I'll get to bed a little earlier.
Josiah had an alright day. He enjoys eating his solid food in the kitchen. He seems to be arching back his neck and head more which is often something babies do when they need more oxygen. His sleeping sats are lower as well. Oh how I would love to give his body more oxygen. I remember looking at him when he was on ECMO at the hospital the night before his last surgery. His lips were red because all of his blood was being oxygenated and pumped through his body. I had never seen him with red lips before. I just looked back at the photos and found one with the monitor showing his oxygen sats at 99%.
I didn't mention yesterday that we had a few hours of nursing last evening, hence we were able to get Starbucks and spend an hour on the couch. The show we were watching had someone die. They talked about the funeral home workers taking the body. How does a mother say, "You can take away his body now"?
I had some quality hide and seek time with Isaac. He told me where to hide three times in a row, which coincidentally was the same place that he hid. I usually look for him and say out loud things like, "Where is Isaac? He's not in the kitchen." Isaac mimicked me and narrated as he looked for me in different places until he came to where he knew I was hiding. What a joy!
My mom made a delicious dessert to share with us today, complete with chocolate hearts from Laura Secord. Isaac was thrilled.
I danced with my Valentine's today. Here's the song. I suggest you dance with your Valentine.
Thanks for all your prayers and support!
Blessings,
Elizabeth
Psalm 16:8,11
I know the Lord is always with me. I will not be shaken, for he is right beside me. ... You will show me the way of life, granting me the joy of your presence and the pleasures of living with you forever.
I asked her about giving Josiah milk every three and a half hours and she is fine with us trying that. We'll start this Saturday. This will allow me to start his last feed at 11:30 PM instead of 12:00 AM so I'll get to bed a little earlier.
Josiah had an alright day. He enjoys eating his solid food in the kitchen. He seems to be arching back his neck and head more which is often something babies do when they need more oxygen. His sleeping sats are lower as well. Oh how I would love to give his body more oxygen. I remember looking at him when he was on ECMO at the hospital the night before his last surgery. His lips were red because all of his blood was being oxygenated and pumped through his body. I had never seen him with red lips before. I just looked back at the photos and found one with the monitor showing his oxygen sats at 99%.
I didn't mention yesterday that we had a few hours of nursing last evening, hence we were able to get Starbucks and spend an hour on the couch. The show we were watching had someone die. They talked about the funeral home workers taking the body. How does a mother say, "You can take away his body now"?
I had some quality hide and seek time with Isaac. He told me where to hide three times in a row, which coincidentally was the same place that he hid. I usually look for him and say out loud things like, "Where is Isaac? He's not in the kitchen." Isaac mimicked me and narrated as he looked for me in different places until he came to where he knew I was hiding. What a joy!
My mom made a delicious dessert to share with us today, complete with chocolate hearts from Laura Secord. Isaac was thrilled.
I danced with my Valentine's today. Here's the song. I suggest you dance with your Valentine.
Thanks for all your prayers and support!
Blessings,
Elizabeth
Psalm 16:8,11
I know the Lord is always with me. I will not be shaken, for he is right beside me. ... You will show me the way of life, granting me the joy of your presence and the pleasures of living with you forever.
Wednesday 13 February 2013
10 Months Old!
Josiah is 10 months old today! We praise God for our ten months with him. He celebrated with creamed corn for lunch and a delightful mixture of green beans and peaches for dinner. Graham and I celebrated with Starbucks and a date on the couch watching a movie. We both noticed that Josiah's face seems puffier today. If something is becoming blocked in Josiah, fluids could back up and cause his face to become puffy. Please pray about this.
The lovely wound care specialist came today and suggested some new taping possibilities and gave me some skin cream to try on Josiah's cheeks. I showed her a blog that my aunt told me about and she ordered a sample of one of the tapes for me that was recommended. It may also be that Josiah's skin will be sensitive to any tape. His poor cheeks get so red as you can see from the photo. (Please note that the tapes in the top photo look horrible but I didn't want to change them until the nurse saw what was happening.)
I'm going to say goodnight. We thank you so much for your love and prayers.
Blessings,
Elizabeth
Galatians 2:20
I have been crucified with Christ and I no longer live, but Christ lives in me. The life I now live in the body, I live by faith in the son of God, who loved me and gave himself for me.
Tuesday 12 February 2013
Sweet sleep
Praise God from whom all blessings flow ... we slept last night! Isaac slept until just before 6:00 AM and Josiah awoke as I was giving him his 6:00 AM meds. It was a lovely surprise to be in my own bed when the alarm went off this morning.
We went to the local hospital this morning for Josiah's monthly RSV injection. Two nurses each gave him an injection in his thighs at the same time. Josiah did fairly well. Unfortunately, due to Josiah being on an anti-coagulant, we needed to put firm pressure on the injection sites for five minutes and then I needed to give him his enoxaparin shot and hold that site down for another five minutes. Josiah is not a fan of this process. She was born in Romania so she was quite surprised to see a map of Romania hanging on the wall in Josiah's room. Graham was in Romania several times before we were married. I'm afraid we haven't redecorated since the room was an office. It wasn't Josiah's room until we came home as he spent his early months in our bedroom.
Isaac had a better day today so I'm hoping this is a short cold. He doesn't like not being able to go in the "baby's room."
The physiotherapist was here today. She was very pleased that his lungs sounded so clear. I was with Isaac while she worked with Josiah but she told me that Josiah stayed on his tummy longer and held his head higher and turned it from side to side more. I asked her about next steps. She said that babies usually roll from their tummies to their backs but to do that they need to be able to push up with their arms. Josiah can't do that yet.
I did a big grocery shop yesterday and made a meal tonight. It felt great to peel and cut up vegetables and make dinner with a recipe. It's also nice that Isaac ate his whole bowl and asked for more. (Obviously broccoli was not a key ingredient in this meal!) It feels good to do some normal things.
A friend of mine told me that she heard her almost two-year old over the monitor when he woke up. He was praying for Josiah, asking God to help. Wow! My dad told me a quotation by Oswald Chambers: "The meaning of prayer is that we get hold of God, not of the answer." So many people have been praying for us for so long. I hope you are coming closer to God.
The wound care nurse is coming tomorrow afternoon.
Josiah was quite tired today. I saw his paediatrician briefly at the hospital this morning. The nurse practitioner had contacted him with her thoughts about his swollen face. He told me that it could be a sign that the pulmonary veins were becoming more obstructed. I thought there would be congestion in his lungs when that happened but he told me that congestion would eventually happen but not necessarily right away. Neither Graham or I noticed more swelling but perhaps it's because we see him every day.
The paediatrician also thought that it would be fine to move to giving Josiah his milk every four hours after I told him I would speak with the dietitian regarding the schedule, later this week. The question will be whether or not he can tolerate larger feeds. The primary reason would be to enable us to get a little more sleep by going to bed earlier.
Thank you very much for your prayers!
Blessings,
Elizabeth
Matthew 11:28-30
Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light."
We went to the local hospital this morning for Josiah's monthly RSV injection. Two nurses each gave him an injection in his thighs at the same time. Josiah did fairly well. Unfortunately, due to Josiah being on an anti-coagulant, we needed to put firm pressure on the injection sites for five minutes and then I needed to give him his enoxaparin shot and hold that site down for another five minutes. Josiah is not a fan of this process. She was born in Romania so she was quite surprised to see a map of Romania hanging on the wall in Josiah's room. Graham was in Romania several times before we were married. I'm afraid we haven't redecorated since the room was an office. It wasn't Josiah's room until we came home as he spent his early months in our bedroom.
Isaac had a better day today so I'm hoping this is a short cold. He doesn't like not being able to go in the "baby's room."
The physiotherapist was here today. She was very pleased that his lungs sounded so clear. I was with Isaac while she worked with Josiah but she told me that Josiah stayed on his tummy longer and held his head higher and turned it from side to side more. I asked her about next steps. She said that babies usually roll from their tummies to their backs but to do that they need to be able to push up with their arms. Josiah can't do that yet.
I did a big grocery shop yesterday and made a meal tonight. It felt great to peel and cut up vegetables and make dinner with a recipe. It's also nice that Isaac ate his whole bowl and asked for more. (Obviously broccoli was not a key ingredient in this meal!) It feels good to do some normal things.
A friend of mine told me that she heard her almost two-year old over the monitor when he woke up. He was praying for Josiah, asking God to help. Wow! My dad told me a quotation by Oswald Chambers: "The meaning of prayer is that we get hold of God, not of the answer." So many people have been praying for us for so long. I hope you are coming closer to God.
The wound care nurse is coming tomorrow afternoon.
Josiah was quite tired today. I saw his paediatrician briefly at the hospital this morning. The nurse practitioner had contacted him with her thoughts about his swollen face. He told me that it could be a sign that the pulmonary veins were becoming more obstructed. I thought there would be congestion in his lungs when that happened but he told me that congestion would eventually happen but not necessarily right away. Neither Graham or I noticed more swelling but perhaps it's because we see him every day.
The paediatrician also thought that it would be fine to move to giving Josiah his milk every four hours after I told him I would speak with the dietitian regarding the schedule, later this week. The question will be whether or not he can tolerate larger feeds. The primary reason would be to enable us to get a little more sleep by going to bed earlier.
Thank you very much for your prayers!
Blessings,
Elizabeth
Matthew 11:28-30
Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light."
Monday 11 February 2013
Two cheeky (and lovely) boys
I wrote last night that one of our boys needed to sleep so that Graham could sleep. After writing that, I realized that it wasn't true. Graham could also sleep if only one boy needed me at a time. It was actually quite amusing how perfectly the boys took over from each other. A few times I finished with one of them and went to the door and then heard the other one. It's nice to see that they are already cooperating and working together. I slept in three beds last night - well, two beds and a comfortable chair. God knows exactly what we can handle.
Actually, Josiah had a much better night last night. He didn't wake up until just after 3:30 AM and that was because he knocked his nasal prongs out of his nose. I'm going to ask our visiting nurse if she knows where we can get some No No's to put on Josiah's arms at night so that he can't reach his face. The socks keep him from scratching his face but he can still rub against the tape and the nasal prongs and he showed me how in the middle of the night how he can bite the sock and pull it off. He knows how to impress his mommy.
The nurse practitioner was here today. She listened to Josiah's lungs and said they sounded clear. We praise God for clear lungs. If we all had the same cold, Josiah was the least affected. We are praying that Josiah does not catch Isaac's cold. I think it would also be a miracle if I don't catch it. I told someone that I missed the memo on how not to catch a cold from your two-year old. If you have this memo, please send it to me.
Our nurse practitioner has referred us to a wound care specialist due to Josiah's reaction to his face tapes. This was great news. She should have different tapes and techniques to try.
Josiah had extra morphine today and was hard to settle at times but he also had wonderful smiles twice. I thank God for those beautiful smiles. The nurse practitioner thought Josiah's face looked extra puffy and wondered if that was a sign of the disease progressing.
It's time to sleep. Thanks so much for your prayers and support!
Blessings,
Elizabeth
1 Corinthians 13:12
Now we see things imperfectly as in a cloudy mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.
Actually, Josiah had a much better night last night. He didn't wake up until just after 3:30 AM and that was because he knocked his nasal prongs out of his nose. I'm going to ask our visiting nurse if she knows where we can get some No No's to put on Josiah's arms at night so that he can't reach his face. The socks keep him from scratching his face but he can still rub against the tape and the nasal prongs and he showed me how in the middle of the night how he can bite the sock and pull it off. He knows how to impress his mommy.
The nurse practitioner was here today. She listened to Josiah's lungs and said they sounded clear. We praise God for clear lungs. If we all had the same cold, Josiah was the least affected. We are praying that Josiah does not catch Isaac's cold. I think it would also be a miracle if I don't catch it. I told someone that I missed the memo on how not to catch a cold from your two-year old. If you have this memo, please send it to me.
Our nurse practitioner has referred us to a wound care specialist due to Josiah's reaction to his face tapes. This was great news. She should have different tapes and techniques to try.
Josiah had extra morphine today and was hard to settle at times but he also had wonderful smiles twice. I thank God for those beautiful smiles. The nurse practitioner thought Josiah's face looked extra puffy and wondered if that was a sign of the disease progressing.
It's time to sleep. Thanks so much for your prayers and support!
Blessings,
Elizabeth
1 Corinthians 13:12
Now we see things imperfectly as in a cloudy mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.
Sunday 10 February 2013
Hoping for sleep
After another night with very little sleep, Graham and I decided to stay at home this morning and take shifts sleeping while the other looked after Josiah. Isaac went to church with his grandparents. We are now wondering if Isaac is getting sick as he has been coughing a little in his bed tonight and he keeps waking up crying.
It was great to see Graham's parents this afternoon. They brought a yummy meal and had fun with the boys. Josiah joined us at the dinner table to try beans for the first time. I wouldn't say they are his favourite.
Josiah was up last night but he was generally happy. I think perhaps if I have the energy I should just try to play with him if he's up and happy tonight in order to tire him out. His mood was up and down today. We need one of the boys to sleep so that Graham can get some sleep. Speaking of sleep, I'd better head to bed.
Thanks so much for keeping us in your prayers!
Blessings,
Elizabeth
Isaiah 41:13
For I hold you by your right hand - I, the Lord your God. And I say to you, "Don't be afraid. I am here to help you."
It was great to see Graham's parents this afternoon. They brought a yummy meal and had fun with the boys. Josiah joined us at the dinner table to try beans for the first time. I wouldn't say they are his favourite.
Josiah was up last night but he was generally happy. I think perhaps if I have the energy I should just try to play with him if he's up and happy tonight in order to tire him out. His mood was up and down today. We need one of the boys to sleep so that Graham can get some sleep. Speaking of sleep, I'd better head to bed.
Thanks so much for keeping us in your prayers!
Blessings,
Elizabeth
Isaiah 41:13
For I hold you by your right hand - I, the Lord your God. And I say to you, "Don't be afraid. I am here to help you."
Saturday 9 February 2013
Breakfast date
As Isaac was enjoying time with his cousins this morning, Graham and I were able to leave the house for a few hours together while the nurse was here watching Josiah. We had a nice breakfast and then went to a couple of stores. It was definitely a treat!
We picked up a digital alarm clock for Isaac's room. We're hoping to teach him to go back to sleep if the first number is not a 6 or a 7. We are ever hopeful.
Josiah had a better day today. He did gag a little one time which was a little disconcerting. He also had some great smiles. At one time when he was crying today, Isaac came in and tried to console Josiah, mimicking what I said and did.
Our biggest needs in regards to Josiah are his nights and his face tapes. The last several nights have not been good. He has woken up often and either been irritable or wide awake. At times he'll fall back to sleep easily, only to wake up a few minutes later. We need to find tapes that don't bother Josiah's skin. His cheeks are very red. It also needs to be a tape that Josiah cannot remove easily as he is quite skilled in that area. We've had some new suggestions so we are hoping something works.
Josiah often appears to be scratching his face. We are unsure if this is due to his morphine or just due to the irritation of the nose prongs and the tapes on his face. The socks we put on his hands help but even with his socks on he would have pulled out his NG tube today had I not been there to grab him. His perseverance is impressive!
We are without our sat monitor tonight as all of our infant sensors no longer work. We'll order more on Monday. Perhaps this will result in all of us having more sleep.
Thank you so much for all of your prayers and support and kind words. We appreciate you so much!
Blessings,
Elizabeth
Psalm 3:3
But you, O Lord, are a shield around me; you are my glory, the one who holds my head high.
We picked up a digital alarm clock for Isaac's room. We're hoping to teach him to go back to sleep if the first number is not a 6 or a 7. We are ever hopeful.
Josiah had a better day today. He did gag a little one time which was a little disconcerting. He also had some great smiles. At one time when he was crying today, Isaac came in and tried to console Josiah, mimicking what I said and did.
Our biggest needs in regards to Josiah are his nights and his face tapes. The last several nights have not been good. He has woken up often and either been irritable or wide awake. At times he'll fall back to sleep easily, only to wake up a few minutes later. We need to find tapes that don't bother Josiah's skin. His cheeks are very red. It also needs to be a tape that Josiah cannot remove easily as he is quite skilled in that area. We've had some new suggestions so we are hoping something works.
Josiah often appears to be scratching his face. We are unsure if this is due to his morphine or just due to the irritation of the nose prongs and the tapes on his face. The socks we put on his hands help but even with his socks on he would have pulled out his NG tube today had I not been there to grab him. His perseverance is impressive!
We are without our sat monitor tonight as all of our infant sensors no longer work. We'll order more on Monday. Perhaps this will result in all of us having more sleep.
Thank you so much for all of your prayers and support and kind words. We appreciate you so much!
Blessings,
Elizabeth
Psalm 3:3
But you, O Lord, are a shield around me; you are my glory, the one who holds my head high.
Friday 8 February 2013
Snow Day
It's been quite the snow day today. The university was closed today so Graham was home from work. It was a treat to have him here. Our nurse made it to our house but her car did get stuck in the snow on the way to our home and a police officer helped her and her husband get back on the road.
Graham spent a lot of his time shovelling our driveway repeatedly today. He also had fun with Isaac while I napped this afternoon (I didn't get much sleep last night) and then he drove Isaac to his cousins' home where he is spending the night.
Josiah hasn't had a great day. He managed to pull out his NG tube about four inches while he was getting his feed but I was able to push it back in without any problems. There is a much greater risk of aspiration if the tube comes out when he is getting milk. Thankfully our nurse has quick hands.
We're not sure why Josiah is crying more these days. Some of it may be due to teething but I don't think that's all of it. He's also up a lot at night. The fact that I don't feel completely exhausted is definitely the grace of God. I am thankful.
I received an email from the mother of one of Josiah's roommates when he was in the transition room at SickKids. Her little girl had a heart transplant a few weeks ago and she's doing great. May God bless her abundantly and draw near to those who made the decision to donate.
We had a nice visit with our pastor and his wife tonight. They prayed for Josiah before they left.
It's nice to be in a warm home as the wind howls outside. If we were born in most of countries of the world we couldn't possibly have this life. Josiah wouldn't be here. We are thankful.
Thank you for your prayers!
Blessings,
Elizabeth
Psalm 42:8
But each day the Lord pours his unfailing love upon me, and through each night I sing his songs, praying to God who gives me life.
Graham spent a lot of his time shovelling our driveway repeatedly today. He also had fun with Isaac while I napped this afternoon (I didn't get much sleep last night) and then he drove Isaac to his cousins' home where he is spending the night.
Josiah hasn't had a great day. He managed to pull out his NG tube about four inches while he was getting his feed but I was able to push it back in without any problems. There is a much greater risk of aspiration if the tube comes out when he is getting milk. Thankfully our nurse has quick hands.
We're not sure why Josiah is crying more these days. Some of it may be due to teething but I don't think that's all of it. He's also up a lot at night. The fact that I don't feel completely exhausted is definitely the grace of God. I am thankful.
I received an email from the mother of one of Josiah's roommates when he was in the transition room at SickKids. Her little girl had a heart transplant a few weeks ago and she's doing great. May God bless her abundantly and draw near to those who made the decision to donate.
We had a nice visit with our pastor and his wife tonight. They prayed for Josiah before they left.
It's nice to be in a warm home as the wind howls outside. If we were born in most of countries of the world we couldn't possibly have this life. Josiah wouldn't be here. We are thankful.
Thank you for your prayers!
Blessings,
Elizabeth
Psalm 42:8
But each day the Lord pours his unfailing love upon me, and through each night I sing his songs, praying to God who gives me life.
Thursday 7 February 2013
The greatest laughs
The OT and the speech and language pathologist were here today. Josiah didn't have oral feeds for a week due to the increased chance of aspiration while he was sick. I gave him prunes to start off with something he likes and they were very happy to see Josiah so eager. He looks for the spoon and grabs it and gets it into his mouth while I get the next spoon ready. He then drops the first spoon and takes the next one.
I asked them about trying milk orally. They suggested waiting until they return in two weeks and then give him milk on a spoon and then from a medicine cup and hopefully eventually a sippy cup. We'll see if I'm patient enough to wait two weeks. They said it would probably be a long process.
I also asked about speech and the speech and language pathologist suggested a few things including starting to use signs with Josiah. I did that with Isaac but I hadn't thought to start them with Josiah. It's nice to have things to try and goals to attain.
Josiah didn't have a good afternoon but tonight I was kissing and making loud noises on his tummy and he had the greatest laughs with his mouth wide open and his eyes dancing. I had to call Graham and Isaac to come and see.
Isaac had fun playing at Grandma and Grandpa's house today.
I'm hoping for more laughter and less crying tomorrow. I had to change Josiah's face tapes twice today after he pulled off his tapes. He would have pulled out his NG tube both times if the nurse hadn't been there to grab his hand when he pulled off his tapes. We keep trying new things with the tapes so we continue to find out what doesn't work and that's good to know. His cheeks look so red whenever the tapes come off. The nurse said she'd seen a picture of an NG tube taped up onto the nose and up to the forehead. I expect that would look ridiculous but I may get desperate.
Thank you for your love and prayers!
Blessings,
Elizabeth
Proverbs 3:5-6
Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will show you which path to take.
I asked them about trying milk orally. They suggested waiting until they return in two weeks and then give him milk on a spoon and then from a medicine cup and hopefully eventually a sippy cup. We'll see if I'm patient enough to wait two weeks. They said it would probably be a long process.
I also asked about speech and the speech and language pathologist suggested a few things including starting to use signs with Josiah. I did that with Isaac but I hadn't thought to start them with Josiah. It's nice to have things to try and goals to attain.
Josiah didn't have a good afternoon but tonight I was kissing and making loud noises on his tummy and he had the greatest laughs with his mouth wide open and his eyes dancing. I had to call Graham and Isaac to come and see.
Isaac had fun playing at Grandma and Grandpa's house today.
I'm hoping for more laughter and less crying tomorrow. I had to change Josiah's face tapes twice today after he pulled off his tapes. He would have pulled out his NG tube both times if the nurse hadn't been there to grab his hand when he pulled off his tapes. We keep trying new things with the tapes so we continue to find out what doesn't work and that's good to know. His cheeks look so red whenever the tapes come off. The nurse said she'd seen a picture of an NG tube taped up onto the nose and up to the forehead. I expect that would look ridiculous but I may get desperate.
Thank you for your love and prayers!
Blessings,
Elizabeth
Proverbs 3:5-6
Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will show you which path to take.
Wednesday 6 February 2013
An off day
Josiah had an off day today. He was very fussy and hard to console at times. He's sleeping well now so I'm hoping for a good night and day tomorrow. It was a long night last night but I'm very thankful the boys did not vie for my attention at the same time.
A new friend came over for lunch and a chat today. It was so nice to have a visit.
I remember when my nephew was young, he used to say, "Look at me, look at me." Isaac now says, "Mommy, turn your head to Isaac." That boy makes me laugh. This morning I was singing, "This is the way we brush your teeth ... after we have a meal." Graham asked Isaac if he'd had a meal. Isaac responded, "Oatmeal."
My mom told me that Isaac was play acting this morning. He pretended that he was Baby Josiah. He lay on the loveseat and said that he needed a cuddle. He heard Josiah cry a lot today.
I need some sleep so I'll say goodnight. Thank you for your love and prayers!
Blessings,
Elizabeth
James 1:17
Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow.
A new friend came over for lunch and a chat today. It was so nice to have a visit.
I remember when my nephew was young, he used to say, "Look at me, look at me." Isaac now says, "Mommy, turn your head to Isaac." That boy makes me laugh. This morning I was singing, "This is the way we brush your teeth ... after we have a meal." Graham asked Isaac if he'd had a meal. Isaac responded, "Oatmeal."
My mom told me that Isaac was play acting this morning. He pretended that he was Baby Josiah. He lay on the loveseat and said that he needed a cuddle. He heard Josiah cry a lot today.
I need some sleep so I'll say goodnight. Thank you for your love and prayers!
Blessings,
Elizabeth
James 1:17
Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow.
Tuesday 5 February 2013
Dancing with my boys
I like to put music on and dance with Isaac and swing him around, up and down, and make him laugh like only a two year old can laugh. I also danced with Josiah today, though I was a little more reserved for his sake. We thank God for entrusting us with these two amazing boys and allowing me to be at home with them.
The physiotherapist came today and she thought Josiah sounded much better than last week. She heard some crackles in the upper part of his lungs but much less than before. I told her that he's not coughing much and she thought it was because he doesn't have much to cough up. That sounds good to me. She gave me something that looks a little like a cup to clap on Josiah's chest to help break up the secretions. The PT said we had lucked out with our nurse as she has experience doing chest percussions on other patients.
A couple from church dropped by with a surprise meal today and they were treated to big smiles from Josiah. I haven't seen him with that many smiles for ages. He enjoys me kissing his tummy and chest and also throwing his blanket up high and bringing it down over our two heads. You know he's happy when he starts cooing and his eyes light up and he may kick his feet.
Isaac and I enjoyed the program at the library this morning. He seems like a different boy there - he's very quiet and doesn't smile until I remind him. He's Mr. Serious, taking everything in. Thankfully, he went to bed better tonight. Graham is an amazing Daddy. He's always coming up with new ways to stop the crying. The other night it was, "Listen for the raindrops" and tonight it was "Okay, you can cry for ten more seconds."
Josiah had a good day with more time playing on his mat and sitting in his chair. He keeps scratching and rubbing his face but I'm not sure if it's due to the morphine or just the tapes that are bothering him.
Thank you for reading and praying!
Blessings,
Elizabeth
Matthew 6:33
Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need.
The physiotherapist came today and she thought Josiah sounded much better than last week. She heard some crackles in the upper part of his lungs but much less than before. I told her that he's not coughing much and she thought it was because he doesn't have much to cough up. That sounds good to me. She gave me something that looks a little like a cup to clap on Josiah's chest to help break up the secretions. The PT said we had lucked out with our nurse as she has experience doing chest percussions on other patients.
A couple from church dropped by with a surprise meal today and they were treated to big smiles from Josiah. I haven't seen him with that many smiles for ages. He enjoys me kissing his tummy and chest and also throwing his blanket up high and bringing it down over our two heads. You know he's happy when he starts cooing and his eyes light up and he may kick his feet.
Isaac and I enjoyed the program at the library this morning. He seems like a different boy there - he's very quiet and doesn't smile until I remind him. He's Mr. Serious, taking everything in. Thankfully, he went to bed better tonight. Graham is an amazing Daddy. He's always coming up with new ways to stop the crying. The other night it was, "Listen for the raindrops" and tonight it was "Okay, you can cry for ten more seconds."
Josiah had a good day with more time playing on his mat and sitting in his chair. He keeps scratching and rubbing his face but I'm not sure if it's due to the morphine or just the tapes that are bothering him.
Thank you for reading and praying!
Blessings,
Elizabeth
Matthew 6:33
Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need.
Monday 4 February 2013
Goodnight
Last night I spent part of the night in Josiah's room. He awoke around 3:30 and didn't want to go back to sleep. He needed the higher dose of morphine most of today. I'm looking forward to seeing the physiotherapist tomorrow and getting her assessment. The early morning seems to be his worst time.
Isaac helped me vacuum today. He moved things that were in my way. We had a good day together, though my little boy who used to go to bed perfectly has disappeared. He still goes down for his nap really well but there was lots of crying tonight.
I made a stew for dinner tonight. It was nice to cook again. If Josiah is doing alright tomorrow morning, I'll go to the library program with Isaac and pray that he doesn't catch any sickness there.
We finished watching the movie OctoberBaby. I'm afraid I've been very ignorant. I hadn't realized that some abortions fail and that there are abortion survivors.
It's time to say goodnight. Thank you for your prayers! We couldn't do this alone.
Blessings,
Elizabeth
Psalm 23:1
The Lord is my shepherd; I have all that I need.
Isaac helped me vacuum today. He moved things that were in my way. We had a good day together, though my little boy who used to go to bed perfectly has disappeared. He still goes down for his nap really well but there was lots of crying tonight.
I made a stew for dinner tonight. It was nice to cook again. If Josiah is doing alright tomorrow morning, I'll go to the library program with Isaac and pray that he doesn't catch any sickness there.
We finished watching the movie OctoberBaby. I'm afraid I've been very ignorant. I hadn't realized that some abortions fail and that there are abortion survivors.
It's time to say goodnight. Thank you for your prayers! We couldn't do this alone.
Blessings,
Elizabeth
Psalm 23:1
The Lord is my shepherd; I have all that I need.
Sunday 3 February 2013
A new tooth!
Graham took Isaac to church this morning and I spent time with Josiah. At the moment we're past the stage of needing two of us with Josiah as he seems much more stable. Recently he hasn't had episodes where one of us needs to hold him and the other gets the blow-by and the morphine.
Josiah was more awake today than he has been the last few days but he did have a long nap on Mommy in the afternoon. He moaned more today but it didn't seem like he was in a lot of pain. I forgot to mention yesterday's excitement: Graham found a third tooth coming in! This is his first top tooth and also the first tooth to come in at home. He's had his other two bottom teeth for months. So, he could be experiencing teething pain.
He didn't cough much today but I can still feel the congestion in his lungs when I hold him. It will be nice to have the physiotherapist work on him later this week. She said she'll bring a cup of some sort to help me clap on his chest.
Josiah had some smiles today that were lovely to see. It's hard not to wonder if God's going to let us keep him when he seems to be doing well. We're thankful to have him right now.
We enjoyed a delicious dinner tonight. We are blessed. Thank you for your love and prayers!
Blessings,
Elizabeth
Isaiah 41:10
Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.
Josiah was more awake today than he has been the last few days but he did have a long nap on Mommy in the afternoon. He moaned more today but it didn't seem like he was in a lot of pain. I forgot to mention yesterday's excitement: Graham found a third tooth coming in! This is his first top tooth and also the first tooth to come in at home. He's had his other two bottom teeth for months. So, he could be experiencing teething pain.
He didn't cough much today but I can still feel the congestion in his lungs when I hold him. It will be nice to have the physiotherapist work on him later this week. She said she'll bring a cup of some sort to help me clap on his chest.
Josiah had some smiles today that were lovely to see. It's hard not to wonder if God's going to let us keep him when he seems to be doing well. We're thankful to have him right now.
We enjoyed a delicious dinner tonight. We are blessed. Thank you for your love and prayers!
Blessings,
Elizabeth
Isaiah 41:10
Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.
Saturday 2 February 2013
Our outing
It was great to sleep in my bed last night and not in Josiah's room. Graham and I actually watched half a movie on the laptop in our room before we went to sleep. It was a very nice change though it meant that we were both a little extra sleepy today.
The nurse was here this morning. After spending some time on his mat, Josiah slept most of the morning on the nurse and then in his chair. He was ready to play a little more in the afternoon.
Graham, Isaac and I went to get Isaac's hair cut this morning. It's needed a cut for a while now. It was nice for the three of us to be out together - we celebrated with a couple of timbits for Isaac.
Josiah is still very congested (you can feel it just by holding him) but he isn't coughing very much. I believe a visiting nurse will drop by tomorrow to check up on him.
Thank you for your prayers and support - it means a lot!
Blessings,
Elizabeth
Isaiah 40:31
But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.
The nurse was here this morning. After spending some time on his mat, Josiah slept most of the morning on the nurse and then in his chair. He was ready to play a little more in the afternoon.
Graham, Isaac and I went to get Isaac's hair cut this morning. It's needed a cut for a while now. It was nice for the three of us to be out together - we celebrated with a couple of timbits for Isaac.
Josiah is still very congested (you can feel it just by holding him) but he isn't coughing very much. I believe a visiting nurse will drop by tomorrow to check up on him.
Thank you for your prayers and support - it means a lot!
Blessings,
Elizabeth
Isaiah 40:31
But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.
Friday 1 February 2013
Happy February
Josiah had a much better night last night. He didn't have a long coughing spell and his sat monitor didn't keep ringing off. I fell asleep on the chair beside him as I put the dishwasher on late and I wouldn't have been able to hear him from my bed. When I woke up it was 5:30 and almost time to heat his milk. Thank You Lord for a good night! I think I will be in my own bed tonight.
We had a good day with our new nurse. Josiah was quite sleepy but he enjoyed time on his mat and in his chair and in Grandma F.'s arms. All the grandparents were here at different times today so that I would be able to spend time with our new nurse as needed.
The physiotherapist phoned me today and gave me some suggestions. I thought crackles were worse than wheezing but it's actually the other way around so Josiah's crackles are a good sign that things are less tight in his lungs. We're doing some clapping on his chest to help with his secretions.
A friend from church came over with some delicious chili and she also brought some oil of oregano to help with my cold! I have heard great things about oil of oregano so I'm excited that I will soon be feeling like a new woman!
Another friend came over for a visit this afternoon. It was great to catch up with her. I thank God for wonderful friends.
Josiah's skin beneath his face tapes was very red so we have changed the tape and moved it to the other side of his face. We'll keep alternating sides and hopefully that will allow the skin to heal.
It's time to say goodnight. Thank you for your support and prayers! God is good. Happy February.
Blessings,
Elizabeth
2 Corinthians 4:18
So we don't look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.
We had a good day with our new nurse. Josiah was quite sleepy but he enjoyed time on his mat and in his chair and in Grandma F.'s arms. All the grandparents were here at different times today so that I would be able to spend time with our new nurse as needed.
The physiotherapist phoned me today and gave me some suggestions. I thought crackles were worse than wheezing but it's actually the other way around so Josiah's crackles are a good sign that things are less tight in his lungs. We're doing some clapping on his chest to help with his secretions.
A friend from church came over with some delicious chili and she also brought some oil of oregano to help with my cold! I have heard great things about oil of oregano so I'm excited that I will soon be feeling like a new woman!
Another friend came over for a visit this afternoon. It was great to catch up with her. I thank God for wonderful friends.
Josiah's skin beneath his face tapes was very red so we have changed the tape and moved it to the other side of his face. We'll keep alternating sides and hopefully that will allow the skin to heal.
It's time to say goodnight. Thank you for your support and prayers! God is good. Happy February.
Blessings,
Elizabeth
2 Corinthians 4:18
So we don't look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.
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