He knows what we can handle

For most of January I was surprised that Josiah was not sick with our cold.  It hit me in the shower this morning that we couldn't possibly have dealt with Isaac and Josiah being sick at the same time (and keep our sanity).  It was nice to be able to focus on Isaac during the night when he was sick and now be able to focus on Josiah.  God knows what we can handle.  Thank You Lord!

Last night seemed better for Josiah.  He coughed but he didn't have a coughing fit that lasted an hour.  I assume the ventolin is helping.  On the other hand his sats are low.  I've never seen him try to scratch himself as much.  We gave him a few doses of Benadryl and he wore socks on his hands all night.  He still rubbed his face but at least his nails couldn't hurt his skin.  I thought I might be able to sleep in my bed last night but Josiah's sat monitor likes to ring off when I lie down.  So, I was on the comfy chair in his room and I was thanking God for the lovely man in Elmira who told me he knew just the chair I needed for nursing Isaac.  It reclines and works well for cuddle times or when Mommy needs to sleep beside the crib.     

Thankfully Josiah doesn't resist the ventolin mask.  It must feel good to breath it in and it's not on for too long.  I just hold it to his face.   

My parents were over this morning so that I could sleep and my pastor's wife came over this afternoon to bless Isaac with some fun play time and us with a lovely meal that Isaac devoured (well, he ate the carrots after he knew that he was in risk of losing out on dessert).  Josiah had a sleepy day.

We said goodbye to our nurse this afternoon and we'll welcome the new nurse tomorrow.  We're praying for a great transition.

Thank you for your love and prayers!

Blessings,

Elizabeth

Isaiah 55:8
For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD.

Crackles in lungs

We had such a wonderful nurse today.  It was so easy to leave Josiah with her.  She has other regular patients but we might be able to see her again on March Break or have her during an evening so that Graham and I could go out. 

The nurse practitioner came to see Josiah today.  She and the nurse could both hear crackles on Josiah's lungs today.  The paediatrician doesn't think Josiah has pneumonia as he doesn't have a fever but try to prevent it, they are increasing his dose of antibiotic that he takes daily as he has no spleen.  He's also on Ventolin now to help open his airways.  The NP wondered if Josiah could have aspiration pneumonia, thinking that perhaps he aspirated when he threw up last Friday.  We've been assuming that Josiah has caught the cold that we've all had here but she also said that if Josiah's pulmonary veins were narrowing, it could also present like this.  We are hoping and praying that is not the case. 

His head is so sweaty but he doesn't have a fever.  I think it might just be from the extra work it's taking him to breathe.  He slept a lot today and he was definitely out of it when we gave him the Ventolin as he didn't even react when I put the mask over his face, which is very unlike him.  I was in with him all of last night and he slept on me for part of the night.  His sat monitor kept ringing off (the lower limit is set at 55 but we were told it's only accurate to about 65 so we can't really know what his sats are anyway.)

The volunteer from Hospice came to play with Isaac this afternoon.  This week Isaac didn't need any time to warm up to her.  He was happy to have her read Frog and Toad books to him and then play with his toys.

My neighbour came and visited with me today.  It was nice to catch up with her. 

I'm not sure what tonight will be like so I need to head to bed soon.  Thank you for keeping Josiah in your prayers.  He needs a touch.

Blessings,

Elizabeth

Habakkuk 3:17-19
Even though the fig trees have no blossoms, and there are no grapes on the vines; even though the olive crop fails, and the fields lie empty and barren; even though the flocks die in the fields, and the cattle barns are empty, yet I will rejoice in the Lord!  I will be joyful in the God of my salvation!  The Sovereign Lord is my strength!  He makes me as surefooted as a deer, able to tread upon the heights."    

Isaac back home

We'll have a new nurse tomorrow.  I haven't met her but I was told I would love her and she has lots of experience.  We'll also have a different nurse starting on Friday.  Our current nurse, whom we've had since we arrived home, is going on Paternity leave.  Please pray that this transition will go well. 

Last night Josiah woke up at 4:00 AM with lots of coughing and congestion for over an hour.  I heard a noise and went in just before 6:00 to find his NG tube pulled almost all the way out (I had just gone to the kitchen to heat his milk).  The tube must have gotten stuck coming out or his hand slipped but God had mercy on us because it didn't come all the way out.  This may have been the wrong thing to do but I just pushed it right back in and then called Graham to help me tape.  Once again he must have taken one small finger and found a way in between the nostril and the tape and yanked.  He now looks quite ridiculous because we have tape over the NG tube all the way under his nose and around the top of his nose.  I decided to try the duoderm again because his face under the tape is so red.  At least Graham went to the hospital today and they gave him two NG tubes.

Isaac is back home.  I received a nice big hug when I saw him (I think my parents must have prepped him!)  His sleep has been out of kilter since being sick so he's not enjoying transitioning back to his regular schedule (it's not that great for us either).  We're hoping Josiah doesn't wake him tonight.

The dietitian came this morning.  Josiah weighs 8.11 kg.  She was very pleased with his weight gain.  I'm going to try to start giving him three small oral feeds each day by adding in cereal in the morning.  I asked the dietitian if she thought Josiah would ever take a cup for his milk.  She thought drinking from a cup would take too much energy for him but I remain hopeful that he might do this in time.  People didn't expect him to nurse for his first three and a half months either or become a chunk of a baby.  Of course I'd love it if we didn't need his NG tube but I wouldn't dream of trying to give him his meds orally as I think that would be torture for him unless they could go in his milk and/or be changed somehow.    

The physiotherapist came this afternoon and was very helpful.  She listened to Josiah's lungs and thought she heard him wheezing.  She suggested we contact his doctor if he's not any better tomorrow.  She also gave some suggestions to help Josiah with his breathing.  She was quite surprised at Josiah's developmental progress.  I put Josiah on his mat and he immediately went to his side.  She asked me if we had made any changes to his medications, which we have not.  He was clearly more interested in grabbing things and held his head higher and longer while on his tummy, all while being sick.  Josiah's worst time seems to be in the early morning and the PT wasn't surprised by this so we'll see what tomorrow morning brings.  He's actually doing better than I expected with this cold so we're praying for continued improvement and an end to his cough and congestion.

It's been a good day and I'm ready to have a good night.  Thank you for all your support and prayers.  Isaac enjoyed being with both sets of grandparents again today and I enjoyed the naps that these visits enabled me to have (in addition to enjoying spending time with them).  Have a good night!

Blessings,

Elizabeth 

A long night

Josiah woke numerous times during the night.  Early this morning he was coughing a lot, he sounded very congested and he was quite upset.  He slept on me for part of the night.  It's hard to think that we can't help him feel better.  We've given him Tylenol throughout the day, hoping that it will take the edge off any pain he may be having such as a sore throat.  We took out a lot of gas from his tummy early this morning (by pulling back air from his NG tube with a syringe) and that seemed to help as well.  He is having regular BMs again in case you were wondering.  

He actually had a pretty good day and didn't cough very often.  He slept a lot but he also enjoyed his oral feeds and had some time on his mat in which he turned himself perpendicular to the way I placed him down and he also turned onto his side.  The nurse noticed a difference in his movements and his eating since last week.  It's nice to see.

Isaac is spending another night with Grandma and Grandpa tonight.  They said he was in good form today.  He wasn't too excited to see us on FaceTime as he was watching Bob the Builder.  It's nice to know he's enjoying his time there. 

Please keep Josiah's cold in your prayers.  We pray that he will be able to breathe clearly throughout this cold and that this cold will not last.  

I was able to get some rest today and we're hoping for a good night's sleep.  Thank you for your love and prayers!

Blessings,

Elizabeth

Psalm 16:11
You will show me the way of life, granting me the joy of your presence and the pleasures of living with you forever.

Our cheeky monkey

(Taken at 5:30 AM...)
"What? Was I not supposed to pull the yellow tube out of my nose?"

Last night Josiah was up quite a few times coughing.  At around 5:30 AM he cried out and I went in to find that he had pulled his NG tube out again.  This time, all of the tape was still on his face so he must have put his finger between his nostril and the tape and pulled.  I'm glad he's a clever boy, though he is a cheeky monkey.  Once again Isaac slept until the perfect time (the morning before, he awoke before 5:00).  We heard him just before we were going to put the new NG tube in so Graham gave Isaac his milk and then returned.  Graham prayed that the NG tube would go in correctly the first time and it did.  I heard a good pop and there were aspirates from his stomach but he did cough and gag afterwards, presumably due to the new irritation back down his throat and also due to his new cough.

We've added extra clear tape between his nose and the white tape.  He loves grabbing on to any tubes and wires.  Thankfully we were able to pick up a spare NG tube when we were at the hospital on Friday.  Graham will try to pick up another one tomorrow though I hope we won't need it.  

We were not planning to go to church today due to all our colds.  My parents invited Isaac over to their home today and overnight so that we could get some rest.  Isaac was very excited to learn that he was going to their home.   He knows "his room" and "Daddy's room" are there.  We Facetimed him this evening and he was thoroughly enjoying playing with toys.

"Mmmmm, prunes!"

My brother stopped by today with a tasty surprise meal.  Josiah had a nice cuddle with Uncle A. while he had his 3:00 PM feed.  He cuddled and slept on Mommy a lot of the morning and cuddled with Daddy part of the afternoon.  He slept quite a bit but he enjoyed his prunes at lunch and blueberries at dinner.  We'll pick up some more vegetables for Josiah the next time we shop.

We're hoping for a restful night for all of us and praying for health, as Graham is hoping to return to work tomorrow.  Thank you for your prayers!

Blessings,

Elizabeth and Graham

Psalm 18:2
The Lord is my rock, my fortress, and my savior; my God is my rock, in whom I find protection.  He is my shield, the power that saves me, and my place of safety.

Saturday at the Faulkners

We had a nurse here for the morning so Graham and I were able to have a nap while Isaac played and looked at books with Grandpa L.  Later in the afternoon he had fun with Grandma and Grandpa F.  He awoke very early this morning so his sleep schedule was completely off today, as was his mood at times (think overtired two-year old).

Josiah coughs from time to time and he made some gagging noises a few times today but he hasn't thrown up since returning from the hospital and he was back on his full milk feeds by 9:00 AM.  He actually showed progress in other ways today.  For the first time, he was interested in his feet.  We started putting his toes in his fingers when we were still at SickKids but he has never cared to reach out to them or look at them but he did both today.  Also for the first time, when I put him on his mat he actually stretched and turned his body slightly to the right and left as if he was thinking about rolling.  That would be great if he started rolling onto his side.  

There's some concern as to what would happen if his cough develops into the same cold that the rest of us have had with lots of congestion.  We asked the nurse if the nasal prongs would work if Josiah were stuffed up.  She said we would need to use the face mask so that he could breathe through his mouth.  Josiah doesn't even like us holding the mask near his face and he's never had to wear the mask (except a few times when he was on ventolin in the hospital but the nurse said that ventolin is often calming for babies).  We hope we won't have to do this.

A friend emailed yesterday to tell me that God had placed it on her heart to pray for Josiah yesterday morning though she didn't know what was going on.  It's very interesting the way God works to show us His amazing love. 

A friend from church stopped by with a yummy meal.  She was able to see Josiah sleeping peacefully in his crib and she tied another knot on Josiah's prayer quilt. 

We are praying that Josiah (and the rest of us) will be free from this cold and be able to breathe clearly and we pray for Josiah's continued developmental progress. 

Thank you so much for your prayers and support! 

Blessings,

Elizabeth

Psalm 57:7,10
My heart is confident in you, O God; my heart is confident.  No wonder I can sing your praises!  ... For your unfailing love is as high as the heavens.  Your faithfulness reaches to the clouds.

A trip to the ER

At various times last night Josiah woke up with coughs and seemed to gag a little.  At around 5:40 he was more fussy and then he started spitting up/throwing up a couple of times.  We immediately wondered if this had to do with the placement of his NG tube.  We were still hoping to give his 6:00 AM meds and feed.  I checked his pop and it was there but it seemed a bit more muffled.  I also had to pull back a lot of air until I had aspirates.  I decided to give a little water before trying to give a drug and he immediately threw up after I did this.  Fortunately we had the suction machine to help us clear his mouth. 

By the way, Isaac slept until 6:15 AM, which is quite rare for him.  He did this even though there was a loud suction machine in the next room.  God knew just what we needed.

We called my dad to come over and take care of Isaac (my mom is sick) and Graham and I prepared to go to the hospital, thinking that we would just get his NG tube checked and probably moved or changed.  We were seen right away when we arrived at the ER.  After asking us a few questions, the nurse doing our intake asked us if we knew "So and So."  "So and So" goes to our church.  We also discovered that she is close friends with another one of our friends from church.  The nurse told us that she had already been asked to pray for Josiah.  That was a wonderful reception to be met by someone we didn't know who was praying for our son!    

We arrived around 7:00 AM and had an x-ray around 8:00 AM.  Thankfully the NG tube was in the correct position and was not causing any of these problems.  It was good news but I wasn't expecting it as it now meant there was a different problem.   We were given the go ahead to give Josiah his medicines.  He threw up about three minutes after we administered them.  Josiah also hasn't had a BM since Tuesday when he missed his PEG.  The ER doctor said we would see a paediatrician but advised us that we needed to think about how far we wanted them to investigate the problem, based on what we would be willing to put him through.  For example, if there was a problem with the bowel that would require surgery, that would mean Josiah would need to be intubated and go to SickKids, etc.  I hadn't thought about something like this happening (i.e. something completely unrelated to his current diagnosis).  

We called our church and asked that a prayer request be emailed to our Sunday School class.  It was sent just after 9:00 AM.  We saw an amazing paediatrician around 9:45 AM.  She didn't want to start an IV if it wasn't necessary so she suggested trying Pedialyte to hydrate him and see if he would keep it down.  She was guessing that Josiah may have caught the bug that had Isaac throwing up last week.  We ended up giving him 85 millilitres and he was completely fine.  In fact, he was happy and smiling and cooing away.  God was answering prayers.  I later spoke with my pastor's wife and she said that they were praying for us this morning, not knowing what was going on and that she had written on her calendar to pray for us today, even though they pray for us every day. 

We arrived home in the early afternoon and he has kept down his medications and Pedialyte the rest of the day.  His 9:00 PM feed was half milk and half water and that hasn't caused a problem either.  He was coughing a little this afternoon and he was fussy around 6:00 PM but he hasn't gagged or thrown up and we are praying for a good, restful night for all of us. 

Another friend from church brought by a delicious surprise meal for our supper while we were at the hospital. 

Isaac had a great time with Grandpa today.  My dad told me that Isaac had him read the book "You are Special" four times in a row, after which Dad drew the line!  This is not a short book!  That made me laugh a few times. 

Okay, it's time to say goodnight.  Thank you so much for your prayers - they make a difference! 

Blessings,

Elizabeth

Isaiah 65:24 (NIV)

Before they call I will answer; while they are still speaking I will hear.

Do you see what's missing?

This photo was taken at 4:30 AM this morning.  Unfortunately the lighting was off so you probably can't tell what's missing.  We heard Josiah start to cry around 4:30 and we found him with his nasal prongs at his chin (thus making oxygen delivery a little challenging).  We returned them to his nose and taped them on and then Graham said, "Where's his NG tube?"  It was at Josiah's feet.

While we were less than excited at this turn of events, Josiah was kind enough to have perfect timing.  I reread the information from SickKids and within the hour, he had a new NG tube down his nose, in time to warm his 6:00 AM feed.

At first when I inserted the tube in his nostril, I felt resistance at the back of his nose but moving his nasal prongs helped that.  I pushed the tube to just shy of the appropriate length and was quite happy with our progress until we realized I had pushed it into his mouth.  The second push resulted in a big cough so I pulled it up right away in case it had gone in his trachea.  Graham prayed again and the third time it worked.

I heard a big pop when I listened for it with the stethoscope and I could pull back stomach aspirates and putting water down the tube didn't bother him.  It's also worked all day so I'm assuming and hoping that everything is fine.  At the local hospital they would x-ray him to check the placement but I don't mind him missing a little radiation (though he's probably had more x-rays in his nine months than I have my whole life).

When we had it changed at the hospital last Tuesday, he coughed quite a bit after it was taped in place.  I happened to mention to the paediatrician that I assumed it wasn't placed correctly due to his coughing but he told me that it was just irritation due to it being put in.  At the time I had wished he wasn't coughing but due to this conversation I wasn't worried this morning when he coughed a few times over the course of the next hour.  God knows what we'll need.   


I think Josiah was quite proud of himself.  Right after we discovered his misdemeanor he was holding his left hand in front of his face with a look of wonder, turning it to the front and back.  His Grandpa noticed the same thing this afternoon.  He was quite excited by his hands today.  May God use them for good.

Yesterday I had written that the nurse had given me suggestions for Josiah's face tapes so I must say that I didn't actually follow them before this happened.  I think I've discovered that Tegaderm does not stick well to duoderm, and/or Tegaderm is not sufficient for holding down the tube.  The nurse had mentioned that they used to tape the tube and then cover it with Tegaderm.  I now see why.  :)

It was a good day.  Isaac had lots of fun with his grandparents.  He's still coughing but he's much more like himself and full of beans.  He was on his skateboard again today (shown in the photo).  He is very particular to say the least.  Everything has to happen like it always happens.  For example, when I heat his milk in the microwave, he watches while standing at the dishwasher, holding two magnets.  When the milk is in the cup, he puts the magnets back and wants picked up and the lights all need to be put off in the kitchen before we head to his room for more steps in the process.  I was trying to explain to him yesterday that he can't always have things the way he wants them.  I think we'll be working on that lesson a while.

We're also working on tidying up when Mommy asks and not just when he's in the mood.  I keep hearing in my head the voices of other parents who have told me that we are often hardest on our firstborn so hopefully I also give him lots of grace.  I certainly give him lots of kisses, hugs, and tickles.   

I was able to have an extended period of play with Josiah this afternoon after the nurse left.  We played on his mat and then in his chair and then I put him in his swing but that's not usually his favourite place.  He later fell asleep cuddling with Grandpa.  Unfortunately both Grandma's have colds (due to hanging out with us) so he couldn't cuddle with her today though she blew him kisses.

We received a card today from someone we've never met who is praying for us.  How incredibly blessed we are to be part of the church, the body of Christ, who is lifting us up in prayers in the name of Jesus, our rock and firm foundation through these challenges.  Goodnight!

Blessings,

Elizabeth

Philippians 4:6-7
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

A better day

We had a lovely nurse today who is originally from Northern England.  I enjoyed listening to her accent and her singing "London Bridge is Falling Down" to Josiah.  She's had lots of experience with babies, including heart babies.  She was able to give me some suggestions for Josiah's face tapes and she explained how to remove the Tegaderm film correctly so that it hopefully won't cause discomfort next time.  Thank you Lord for nurse H.  She once worked in the Critical Care Unit at SickKids back in the day.  

It was great to have a volunteer from the Hospice who spent time with Isaac.  Isaac didn't take too long to warm up to her.  She'll come once a week.

Josiah had a better day today.  He moaned less but he slept quite a lot.  We only gave him the higher dose of morphine once.  It's hard to say for sure but I think carrots may have taken first place on his favourite food list.  He tried them for lunch today and thoroughly enjoyed them.  I'm not sure if I should admit this but when I give him food I put him in his chair which I put in the crib and then I take off his sleeper to his waist and cover his sleeper with a receiving blanket.  I'm happy that he is good at getting messy but I'd rather wash the receiving blanket than keep changing his clothes.  

We enjoyed our tasty leftovers from last night's dinner.  Isaac is looking forward to spending time with his grandparents tomorrow (as am I).  Currently, I'm looking forward to sleep so I'll say goodnight.  Thank you so much for your prayers.

Blessings,

Elizabeth  

Romans 15:13 - May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.

A good night's sleep

Isaac and Josiah slept through the night last night!  Yeay!

Josiah was in good form early this morning but the nurse suggested giving him a higher dose of morphine due to his moaning.  We increased the dose for three of his feeds but I'm not sure if it made a difference.  It's hard to know what to do but we ask God for wisdom and know He provides. 

Isaac was coughing a little less today, though I seemed to be coughing more.  Isaac had lots of fun with his aunt and Josiah certainly enjoyed her cuddles.  I checked the calendar and realized that we're having our first visit from a Hospice volunteer tomorrow afternoon so I rescheduled the visit from my in-laws to Thursday.  Our regular nurse is off tomorrow so we'll have a nurse who hasn't met Josiah before.  I hope they'll both adapt well to each other, especially as I'm still trying to keep my distance from Josiah due to my cold (as much as possible anyway).

We received a lovely card from a Grade 4 class today to let us know that they are praying for us.  It was such a nice surprise!

[Josiah just awoke so I've been trying to settle him for a while.  He stopped crying but I'm hoping he'll fall back to sleep soon.]

I'd better say goodnight.  Thank you for your prayers!

Blessings,

Elizabeth

Fever gone

I gave Isaac his last dose of Advil just after midnight last night so hopefully his fever is gone for good - five days is long enough.  Unfortunately, Graham and my parents are now officially under the weather and Isaac and I are still sick. 

This morning Josiah would not calm down.  He had morphine at 6:00 AM but at 6:50 AM we gave him a dose of chloral hydrate to sedate him.  That's the first time since coming home that we've used this drug.  Thankfully it seemed to work within minutes and we didn't need it the rest of the day.  There were a few more smiles today (including a lot when he was sleeping according to my dad who was holding him) but he also moaned a lot.

He's making more progress with his oral feeds.  Yesterday and today he's actually allowing the spoon to be put right into his mouth which is exciting to see.  He enjoyed his peaches at lunch today.

I had a need this Thursday night and someone from church called out of the blue and met the need.

We're putting solo time on hold while we're sick.  When Isaac is well, he can play in Josiah's room but if both of them are up and needing attention after the nurse leaves and before Graham gets home from work, it helps to have another pair of hands.  My parents were here today.  My sister-in-law will be here tomorrow and my in-laws will be here on Wednesday.

It's time to say goodnight.  Thank you for all the prayers - we really appreciate your support!

Blessings,

Elizabeth 

Wipe nose

Many times a day, Isaac says, "Wipe nose."  We're still working on adding the "please" I'm afraid.  At least he doesn't cry every time we need to wipe his nose.  Yes, Isaac is still sick and I think I may have caught what he has as I've been using lots of Kleenexes too.  Thankfully he ate a little more food today and was able to keep it down.  Graham and Josiah are still breathing clearly.

Josiah moaned a lot yesterday and today.  I didn't see any smiles.  We gave him his morphine early twice today.  I am wondering if his body is now used to this level of morphine and he's needing more.   I hope not.

A very kind and generous woman from my church read yesterday's blog post and passed along some skin conditioning oil to try on Josiah's face.  I put a small dab on his red cheek and it really seems like it's already made a huge difference.  Thank you!   

I'm heading to bed as I'm expecting Isaac may wake up again in the night (though I don't mind if he surprises me by sleeping in.)  We had a nice long cuddle time on the loveseat this morning - one small benefit of him being sick. 

We enjoyed a great dinner tonight.  We are so blessed.  Thank you so very much for your prayers!

Blessings,

Elizabeth  

Saturday nursing

I wish I had more to report these days; however, it's nice that things with Josiah are more stable.  Until the end of March we'll have a nurse Saturday mornings which is a great blessing.  I was with Isaac again last night so I napped this morning  while Graham bought some groceries and my parents played with Isaac.  This afternoon Graham was able to get a nap and Josiah also enjoyed a nap in Grandpa's arms.  

I tried giving Josiah peaches today but he wasn't too interested.  That may have been due to whatever was making him irritable this morning so we'll try peaches again tomorrow.  His favourite is definitely prunes so I gave him some of those tonight before his 6:00 PM feed.  He was able to last a little longer on his tummy this afternoon and he held his head higher.  It would be wonderful if he kept progressing in this way.  This past week we've noticed that he's been able to sit longer on someone's lap. 

I was hopeful that Isaac's fever was gone this morning but it returned this afternoon.  He is not a fan of Tylenol or Advil but at least he was able to keep them down today and he had a three hour nap.  I think three hours is about the longest he's slept in a row since Tuesday night.  His cough wakes him up.  I've kept changing my clothes as I've gone between Isaac and Josiah in order to try to minimize the spread of germs. 

Graham and I changed Josiah's face tapes tonight.  At one point he actually grabbed the untaped NG tube but we were able to grab him before he yanked it very far.  We're trying to tape just the one side of his face and it seems to be working.  The other side of his face is still a little red so hopefully we can figure out what to do about that. 

Thank you for your continued prayers for health in our home.  We also ask for prayer for wisdom as Graham and I make decisions about Josiah's care. 

Blessings,

Elizabeth

DVDs to the rescue

This will be short.  We're hoping to give Isaac one more dose of Tylenol at 10:15 PM before he heads to bed.  His bedtime is 7:00 PM.  He was feverish again today but he only threw up once and he's been able to keep his medicines down thankfully.  His temperatures have been high and he's been very congested so we took him to the doctor to make sure his lungs sounded clear and they do so we assume it's viral.  I'm hoping we don't have a third straight morning of The Hungry Caterpillar DVD at 3:00 AM.  At least it calms him down and puts him back to sleep.  Unfortunately my 5:40 AM alarm for Josiah's feed woke Isaac this morning as he was lying on me on the couch. 

Josiah had a good day with lots of smiles.  Both boys saw both sets of grandparents today so we've all been blessed.  Graham had the car but one set of grandparents helped us with the doctor's appointment and the other set picked up our medical supplies. That's not all they did of course.  The boys enjoyed their cuddles and playtime with their grandparents. 

We had a delicious dinner with friends tonight. 

Thanks for your prayers for health for our family. 

Blessings,

Elizabeth

Josiah has grown

Isaac spent lots of time on the couch today, starting in the early morning hours.  We've given him Tylenol and Advil throughout the day.  He's woken up a couple of times so far this evening so this may be a long night.  (Update:  Grandpa is currently cuddling him on a chair as he keeps waking up, Graham is at a meeting and I need to attend to Josiah's feed and meds.)

Josiah had a good day.  He saw the dietitian at 9:00 AM.  She is hoping we can increase the amount of Josiah's feeds to 85 millilitres.  We don't want to rock the boat with Josiah feeling better these last couple of weeks but we'll try it and stop if he seems uncomfortable.  His weight, height, and head circumference are all around the 15th percentile which the dietitian was happy with.  She was surprised to see how much Josiah had grown, length wise. 

At 11:00 AM Josiah showed off his taste testing abilities for the OT and the speech and language pathologist (she observes his swallowing).  He clearly enjoyed himself.  We'll keep trying new foods every three days.  The OT was also able to suggest some positioning ideas to help Josiah when he's in the crib.

It's time to say goodnight.  Thanks for your love and prayers.

Blessings,

Elizabeth   

Cheek to cheek

Isaac was sick today.  He was coughing and had a high fever and he threw up instead of napping.  He was content to rest on the couch by my mom while I (Elizabeth) went to the doctor and ended up with antibiotics to hopefully alleviate my persistent cough.  We're praying for fast recoveries for the two of us and we're praying that Graham and Josiah will not catch what we have.

Josiah had a good day with lots of time out of his crib.  The sun was shining in his window so he sat on his nurse's lap and played with toys in the sun.  We've been able to keep Josiah's nose prongs on without taping the right cheek.  It's lovely just to put my cheek to his and feel his skin.  Thankfully his skin looks much less red now. 

We received a special letter with hugs from Columbia from our friend's mother who is praying for Josiah.  Our friends translated it from Spanish.  It's amazing to know that there are people throughout the world who are praying for Josiah.

A kind neighbour dropped by with some muffins today.  We are surrounded by caring people.

Thank you for praying for us!  We are blessed.

Blessings,

Elizabeth

Hospital trip

The hospital trip was successful though not very fun for Josiah.  He had his NG tube changed first.  Next he had his RSV shot.  Thankfully he just made the cutoff weight for having the full dose in one leg instead of both legs.  Then I gave him his enoxaparin injection.  He had blood work next.  The nurse couldn't find veins so she pricked his heel and it took a long time of squeezing Josiah's heel to obtain enough blood, all the while he was crying in my arms.  We then went to have an x-ray to ensure that the NG tube was in the correct spot.

By this time Josiah had nearly tuckered himself out.  We went back to the outpatient clinic to await the results.  The tube was in the right location, his haemoglobin level was good, and his calcium level was good.  I'm glad his haemoglobin level was fine but I think I was a little disappointed as I was hoping it was low so that a blood transfusion would help increase his oxygen saturation levels which seem to be a little lower of late.  At least he was saved from more needles.  

His face was very red after removing the Tegaderm.  The nurse put Tegaderm on the left side of his face to hold the NG tube and nose prongs in place.  We haven't put any tape on the right side of his face.  One small spot bled a little after removing the tape so we're letting the skin breath as long as possible while trying to keep a closer eye on him if he cries to ensure that he hasn't moved the nose prongs.  I think I'll use Duoderm under the Tegaderm next time I change the tapes.

While my dad drove Josiah, our nurse, and me to the hospital, my mom took Isaac to the library for his program.  In case you were wondering, 'H' was the letter of the day.  Before lunch, our new assistant pastor and his wife came by.  It was so nice to have a visit with them. 

Josiah tolerated his physiotherapy better today.  He has it every other week.  He also enjoyed tasting pears for the first time tonight.  I've noticed before that he reacts well to the puppets on the Baby Einstein videos.  We were blessed with some new Baby Einstein videos last week.  This afternoon he actually laughed when a dog puppet came on the screen.  That was nice to see. 

My solo time this afternoon went well.  Josiah was a little fussy at first so Isaac and I hung out in Josiah's room and read books on the rocking chair.  When Josiah fell asleep we moved to the kitchen for more fun with playdough until Graham arrived home.  They played together until our tasty supper was ready.   

Josiah was sweaty after having his pears tonight.  I get a little nervous when I see changes like this.  He was coughing a little today so I asked the visiting nurse to listen to his lungs but they sound clear.  I think I've been assuming that if his lungs sound clear then his pulmonary vein stenosis hasn't become worse and therefore he isn't any worse.  Those could be two faulty assumptions.  I have been focusing mainly on his pulmonary vein stenosis, forgetting that he still only has one main valve in his heart and it's leaky.  We don't know its status but I think his oxygen saturation levels would decrease if the leak were getting worse.  There's no point dwelling on this.  We're having good days and we're thankful for them.  I can still sing happy songs to God in the shower every morning.

It's time to say good-night.  Thanks so much for your prayers and support.

Blessings,

Elizabeth

Solo

I stayed up too late last night so I need to head to bed soon.  Today was the first day I tried going solo with the two boys after the nurse left at 3:30 until Graham returned from work.  It went well.  Josiah actually slept for most of this time and this seems to be part of his sleeping pattern.  

My sister-in-law dropped by this morning to pick something up and ended up having fun with Isaac for a while followed by a cuddle with Josiah.  At one point she was making Isaac laugh in front of Josiah who was then responding to Isaac's laughter. 

It's Monday so I ordered oxygen tanks to be delivered tomorrow.  I also order eight medications that we'll run out of later this week.  Tomorrow morning we're leaving early to go to Grand River Hospital for Josiah's RSV injections (one in each thigh at the same time).  As he is on anti-coagulant medication, we need to press down firmly on the sites for five minutes and then inject him with his anti-coagulant and then hold down firmly on that injection site for another five minutes.  Five minutes seems a lot longer when I'm pressing on Josiah's thigh.  We'll also have Josiah's NG tube changed and the paediatrician will speak with me about the possibility of testing Josiah's blood to check his haemoglobin level.  

Someone at church on Sunday asked how we know when to give Josiah more morphine.  Since we moved to giving him morphine with each feed from 6AM to 6PM, we haven't needed to give extra doses thankfully.  However, we would give extra morphine if Josiah's breathing was laboured.  The main sign for this is chest indrawing under his ribs.  He always has some indrawing but it gets worse when he has oxygen hunger.  Often his breathing is louder as well.  He's also very upset and irritable at these times which worsens the oxygen hunger.  We give him blow-by (extra oxygen from a mask held beside his face) while we wait for the morphine to kick in (usually a half hour).  

Thanks very much for reading and for your support, prayers, emails and comments.  Good night!

Blessings,

Elizabeth

Nine months old today!

Josiah is nine months old today - he celebrated with prunes!  We thank the Lord for another milestone. 

We made it to church!  We were only slightly late for the second service but we needed to leave before it ended.  It felt very good to be able to sing and worship God with other followers of Jesus.  Josiah did very well and had a good, though sleepy, day.  I thought we might be later for church as we needed to change Josiah's tapes this morning. 


You'll notice in the picture that the tape holding his nose prongs and NG tube in place is transparent.  I asked the nurse for advice on Saturday and she suggested trying Tegaderm.  We put skin barrier on his face before the tape but the real test will come when we try to remove the tape.  It's supposed to allow the skin to breath but also be impermeable to liquid.  The prunes wiped off easily.  It's also seems harder for Josiah to pull off.  I'll be thrilled if it works, though I wish the timing had been just a few days sooner, in time for the photo shoot.  It's so lovely to see more of his face again.  He was sucking his thumb and fingers more today.  

Isaac had a good day too.  He likes going to church with Grandma and Grandpa morning and night.  He tells me which friends he sees in the toddler room.  Here he is posing for Mommy on his rocking horse. 

I stumbled across a song this morning and I knew I wanted to post it.  One of the lines in the song refers to a woman seeing her life as a tragedy and I just wanted to make clear that those words in no way express how I feel about my amazing life with a wonderful husband, two beautiful boys, and incredible family and friends.  However, I do like the message of this song, "Who You Are" by J.J. Heller.

We enjoyed a delicious meal tonight.  I was reading a little on Ann Voskamp's blog today.  I read her words and I want to follow Jesus more.

It's time to have a nap before I feed Josiah.  Good night and thank you for your support and prayers!

Blessings,

Elizabeth

A sleepy day

Our new nurse worked out very well today and Josiah had quite a good day though he was fairly sleepy for a lot of it.  I forgot to give him food by mouth at 12:00 PM but he had some prunes again in the evening and he liked them.  He was even taking the spoon from me and putting it partially into his mouth.  His interest and progress are very encouraging.  

It was great to visit with old friends this morning.  Tonight my sister-in-law prepared the meal for our two families and my parents.  We all had a nice time together at our home.  Isaac loves playing with his cousins.  He was sad that he had to stop playing to go to sleep. 

Speaking of sleep, it's that time again.  We are very hopeful that we'll make it to part of a service at our church tomorrow now that we're all feeling better. 

We have been supported by family, friends, and strangers in countless ways.  Thank you for your part.  We so appreciate all the prayers that are being said on Josiah's behalf.  God hears and He knows and loves Josiah very much.  We thank God for His love, faithfulness, and goodness.

Blessings,

Elizabeth

A bassoonist in the making

At 6:00 AM Isaac went to say good morning to Josiah who was getting his milk and watching Baby Einstein.  Isaac joined him in the crib and lay down beside him to watch.  Josiah loves it when Isaac is near (almost all of the time).  Isaac passes Josiah toys and mimics the way I try to calm him. 

It was a good day for Josiah.  He once again enjoyed his prunes at lunchtime and he opened up his mouth more today.  The only problem is that the tapes on his nose prongs and NG tube get very dirty and it's a hassle and not great for his skin to keep changing them frequently.  It would be great to know a way to keep the tapes clean during our taste tests as we are hoping to be feeding him more and more food.  We try to change tapes around 7:00 PM because Josiah usually sleeps through most of the process. 

I love that Isaac acts out parts of the stories we read or things he hears from us.  He is a very animated boy at times.  I was showing him various instruments on YouTube this morning.  He said he would play five instruments (that's been his favourite number for a while).  His name is Isaac Kenneth Russell (each name has double letters) so I'm hoping he plays the bassoon one day but I had also included the cello, percussion instruments and the bass in his options.  However, I realized tonight that all woodwinds and brass instruments are also great options so he shouldn't have trouble coming up with five.  :)  There's a photo somewhere of my dad with an accordion and Graham told me that his dad played an accordion so perhaps he needs to follow in the footsteps of his namesakes - I guess that would be almost as cool as having a bassoonist for a son.  (Note:  Graham is a little concerned that I am being too subtle and obscure.  In case you were confused by the above paragraph, all of the instruments have double letters like his names).  

The potty is not being frequented as much as I would like by a certain two year old.  Yesterday I asked Isaac what I should give him if he has a BM on the potty (I don't use that word).  His answer was a screwdriver.  So, I told him that he could play with Daddy's screwdriver if he ... on the potty.  I've been reminding him of that, to no avail, so today I added chocolate in addition to the screwdriver.  I think he's holding out for something big.

Grandma and Grandpa F. were over today helping out.  Isaac loves spending time with his grandparents and it's always great to have them here.  A friend also dropped by and it was great to catch up with her.

We will have a new nurse here all day tomorrow as well as future Saturday mornings.  There is funding available for children who are medically fragile and technologically dependent.  The nurse and her supervisor came by today to assess Josiah's care needs.

It's time for sleep.  Thank you for all your support and prayers.

Blessings,

Elizabeth

Happy Moments

It was another good day.  Josiah sleeps quite a lot but he also had time to play on his mat and listen to some stories.  I gave him tastes of prunes at lunch and sweet potato at dinner and he liked them both, especially the prunes.  Every happy moment is a gift. 

Isaac had two visitors to play with today.  He enjoyed his walk outside and had a lot of fun "painting" the snow with coloured water.  He also liked his stew for dinner. 

It's hard to believe it's Friday tomorrow.  It's time for bed yet again.

Thank you for your support and prayers.  God is good to us.

Blessings,

Elizabeth

Photo Shoot

The photo shoot went quite well.  Josiah didn't smile much but he was calm throughout the session so that was a blessing.  Isaac was also well behaved, though near the end of the session I was happy I had brought some Smarties along and so was Isaac.  The photographer was very kind and accommodating.  She took photos of the boys with both sets of grandparents and even our nurse.

We arrived home in plenty of time to get Josiah's meds and feed, though Isaac had his lunch later than usual.  I'm guessing he became over tired because he was wired and was not about to have a nap in the afternoon.  This of course affected Mommy's plans for a nap!

Josiah had a long cuddle and sleep in his Grandma and Grandpa's arms before his supper tonight.  He enjoyed being in his bathtub before bedtime.  We praise God for a good day!

Thanks for your support and prayers!

Blessings,

Elizabeth

Photos Tomorrow

We're getting our photos taken tomorrow morning by a photographer who volunteers with Now I Lay Me Down To Sleep.  We're going to her studio which is about twenty minutes away so we're praying that all goes well with the timing of everything and that Josiah and Isaac are in good form. 

This wasn't Josiah's best day. We kept needing to give Josiah his morphine a half hour early.  He's sleeping comfortably now.  As soon as I typed that last sentence, I heard him start to cry!  Graham is just finishing his feed.   I think he'll settle easily after a diaper change.

Isaac and I had fun at the library program today.  It was nice to get out for a walk with Isaac.  Unfortunately he fell asleep on the way home in the stroller so that changed our nap schedule.  We'll see what it does to the early morning schedule.

We enjoyed some amazing potato soup tonight.  It's almost time for bed.  Thank you so much for your prayers and support.  It means so much.

Blessings,

Elizabeth 

A good day

It was a good day today.  Friends helped with Isaac in the morning and afternoon.  I was able to get to bed at a decent time last night and the boys slept well so I didn't feel exhausted today.  I think this is going to be manageable, even with less help.  Thankfully Isaac has a nap in the afternoon. 

I was able to get Josiah on his mat (and his tummy) both in the morning and late afternoon.  I think that may have tuckered him out because he was sleeping for his 6:00 PM feed.  I skipped the morphine at 6:00 PM but I did give him Benadryl because he was itchy.  He even had a couple of regular BMs today which was a nice surprise as they have always been explosive since we had to start giving him PEG to help him because of the morphine (sorry if this is too much information). 

The Christmas tree is now in the basement.  We had planned to do it the other night but it didn't happen.

I spoke with our local nurse practitioner today.  We may try to get Josiah's blood tested to see what his haemoglobin level is.  We may be able to optimize it by giving him a blood transfusion.  This should help his oxygen saturation levels and hopefully help him to be more comfortable.

Graham had a good first day back at work.  Thanks so much for your prayers for this transition.  So far so good!

I'm heading to bed. 

Blessings,

Elizabeth

Time for bed

This needs to be short so that I can head to bed to get some sleep before the late night feed and meds.  Today was similar to yesterday.  Isaac went to church with his grandparents but unfortunately we didn't get there.  We gave Josiah morphine with all his daytime feeds.  We are usually able to stop the morphine at 6:00 PM as he's been sleeping well at night thankfully, so that's the plan again.  Josiah was in the stroller a lot today.  We had some cuddles though they are not quite as you might imagine.  He tends to want to arch his head back and he's not a fan of Mommy sitting down.  We had some visitors this evening and a delicious dinner.

Graham heads back to work in the morning.  Please pray that this next transition goes well for all of us.  We appreciate your love, support, and prayers.  Good night!

Blessings,

Elizabeth 

Fresh tears

I cry tonight for the boy I don't know.  For the eight month old who smiles and giggles and coos and chatters and flies forwards and backwards on his mama's legs.  For the boy who happily nurses to sleep and loves to eat his food in his chair at the table.   For the boy who loves to be with his older brother who makes him laugh.  This boy breathes easily and deeply and has rosy skin. 

I wouldn't trade Josiah for the world.  He is a beautiful gift from God.  I wish I had more happy memories.  The lovely palliative care doctor asked us to tell him about Josiah.  Did he have a favourite toy?  What was his personality?  What are our memories from before we went to the hospital?   A lot of that time was challenging too. 

Though he looked perfect, he had so much wrong with his heart at birth.  What a gift to be able to take him home a week after birth.  Amazingly, the doctors expect him to die of something he didn't have at birth - pulmonary vein stenosis.  A small percentage of babies who have their TAPVD fixed then acquire pulmonary vein stenosis which is what happened to Josiah.   

We were watching a DVD tonight in which someone died.  That's what set this off.  I can't imagine the moment when breathing stops.  What on earth would I do next, except to pray and cry and thank God for His mercies - for they are new every morning.  I will need them again and again.  I can't imagine not being able to hold him in my arms.  My sweet Josiah with the beautiful smiles - Mommy will always love you.   

Short Report

There's not much to report today.  I did have some cuddles with Josiah so that was special.  We gave him morphine with his feeds.  He enjoyed the taste of prunes at 6:00 PM and we changed his tapes and nasal prongs tonight.  Isaac coloured a picture of a plane for Josiah which is now taped to the crib.  Isaac likes to pat Josiah like he sees me doing when I'm trying to calm him.

It's time to put the Christmas tree away and have a good night's sleep.  Isaac slept until 6:00 AM this morning so that was a blessing!

Thank you for your prayers and support!

Blessings,

Elizabeth

One year later

Yeay - Isaac's back!  We've had fun being with Isaac today.  He's such a joy.  

It was a year ago today, on the first Friday in January, that Graham and I travelled to Toronto for my first echocardiogram at SickKids Hospital.  During the appointment we met with a cardiologist who outlined Josiah's prognosis and our options.  They confirmed everything we had heard at McMaster Children's Hospital the week before.  From the hospital we travelled to Stouffville to talk and cry with our friends before returning home. 

We didn't know all that was coming but we knew it would be challenging and we knew we wouldn't walk alone as God, our family, and friends would be with us and Josiah.  We also didn't know about all the wonderful people we would meet along the way, including hospital staff, nurses, doctors, surgeons, patients' families, Ronald McDonald House staff and families, and new friends in Toronto.  A lot happens during a year.  We thank God for the gift of Josiah, we thank Him for all His amazing provisions, and we thank Him for the love, joy, and peace that is ours through Christ Jesus.

Graham and I had a real date today!  Graham's parents brought Isaac home and then stayed to help the rest of the day.  Right before we thought Isaac was going to have a nap, I went to get blood work done while Graham picked up some medical supplies.  Then we went out for lunch!  I think this is the first time we have both left the house at the same time without Josiah.  It was nice to be together - we tried to stay awake to chat.  Graham goes back to work on Monday so life is about to change again.   

We enjoyed a delicious supper together tonight before Graham's parents headed back home.  Isaac particularly enjoyed his spinach.

The physiotherapist came today and worked briefly with Josiah.  Josiah did not have a great day.  The nurse practitioner wasn't able to come today but she'll come next week. 

Thanks for all of your love, support, and prayers. 

Blessings,

Elizabeth

Isaac's back tomorrow

Josiah fell asleep around 11:30 PM last night and then was only up around 1:30 AM for a diaper change.  He again slept until 8:00 AM, right through his 6:00 AM feed.  I'm always a little nervous when I give him his meds when he is sleeping as at least one of them is very cold which bothers him when he is awake.  Thankfully tonight we were able to get him to sleep around 7:45 PM, though he has been fragile.

He moaned and cried a lot today.  Even stroller rides didn't seem enjoyable to him today.  He did enjoy some nice cuddles with his uncle though.  I'm wondering if part of the reason he was happier yesterday was due to our morphine schedule from the previous few days.  Perhaps we should have kept giving him lots of morphine yesterday.  It's hard to want to give him morphine when he's calm and happy.  The nurse practitioner will be back tomorrow so we'll ask for her advice.    

My cold is mainly in my chest now.  I'm refraining from cuddling Josiah.  We look forward to showering Isaac with hugs and kisses when he returns with Grandma and Grandpa Faulkner tomorrow.  We've missed him.  Each time we call him on FaceTime he's full of energy and stories to tell. 

We enjoyed a delicious tamale pie tonight for dinner.

I've been trying to sort through a bin of paperwork that we brought back from SickKids.  I'm imagining a paperless society with documents that file themselves.  There were photos in the bin of Josiah from before his stay at SickKids.  He seemed so normal then even though his anatomy has always been problematic.  Every so often I'll look at him now and imagine his face without the nose prongs and NG tube.  He did go a couple of days without needing any oxygen in the hospital. 

We've signed up Isaac for a weekly program at the library so it will be fun to go to that with him starting next week.  Our nursing shifts will start a half hour earlier at 7:30 AM so that Graham has time to get ready for work.  For January at least Graham will drive to work instead of taking the bus as it will save time.

Goodnight and thank you for holding us up in your prayers.

Blessings,

Elizabeth

Smiles

Someone out there must have prayed for smiles because we received quite a few of them today from Josiah!   It was a good day.  Josiah only had morphine at 6:00 AM and 6:00 PM.  Thankfully, he's also had BMs two days in a row.  He is more fussy this evening but we're going to see if Tylenol and Benadryl will help.  Gone are the days it seems when Josiah went to sleep right after his enox shot at 7:00.  It's nearing 10:00 PM and Graham is pushing him in the stroller.  Actually, we just discovered that he really likes the puppy that sings and dances to "It Makes Me Want to Shout."  He stared at it when it sang and as soon as it stopped he made a huge pout on his face and started to cry.  He immediately stopped when the puppy started singing again.  I guess that gives us another trick up our sleeves. 

He woke up around 1:30 AM last night but he fell asleep after I changed his diaper and then he slept until I knocked over the oxygen tank around 8:00 AM (it makes quite a loud noise).  He slept right through his 6:00 AM meds and feed.

Graham and I were planning to get a little more sleep this morning but then someone knocked on the door and there was the dietitian whom I had forgotten was coming.  I checked the calendar and realized that the social worker from Hospice was coming at 10:00 so we each washed and dressed instead.

Josiah lost a little weight.  This didn't surprise me given that we decreased his feeds.  As he is dehydrated we thought we'd increase his feeds again.  We expect he'll tolerate it.

The social worker from Hospice was very helpful.  Our main questions were about Isaac and how to talk to him about what's going on.  We appreciated all that she had to say.  One very good point was not to just say to Isaac that Josiah is sick but to use the actual name of the disease (pulmonary vein stenosis, for example).  This is important as Mommy and Daddy also get sick but it's not the same thing.  


The doctor said my lungs sounded clear at my appointment today so I should be at the tail end of this cold.  We'll see how the night goes and then decide in the morning if Isaac will return tomorrow or the next day. 

We enjoyed some delicious homemade turkey soup for dinner.  Hopefully we'll be able to get to bed soon.  If we can't get Josiah to sleep in the evenings it's going to be very difficult for Graham and I to get enough sleep when Graham returns to work so please pray about this. 

Thank you for your prayers and support!

Blessings,

Elizabeth

Happy 2013!

Happy New Year!

It's hard to believe it's 2013.

Our nurse informed me today that the Chinese remedy I took last night (water boiled with ginger and brown sugar) unfortunately only helps at the onset of a cold.  They have other herbs that they use for my stage of a cold but he and his wife didn't think it would be wise for me to try the remedy in case it doesn't have the same effect on me as I am not Chinese.  Too bad.  It's sweet of them to be so caring.  I do think/hope I'm on the upward swing of this cold.  I happen to have a physical scheduled for tomorrow so I'll be able to get the doctor to listen to my lungs just in case.


Last night Josiah started crying on and off around 3:00 AM.  I changed his diaper but that didn't help for long.  We gave him morphine around 3:45 and then Graham put him in the stroller where he eventually had a long sleep.  He was in the stroller a lot today and even had many of his feeds there.  He seems to be most comfortable when he's upright and moving.

His life right now mainly consists of sleeping, stroller rides, some times of moaning, and some cuddles.  We especially appreciate any time when he is alert and happy as these times are rare.  He is definitely moaning less, for which we are very thankful.  He does like his muslin receiving blankets and often likes to sleep with the blanket touching his face.  This is a photo of Graham holding Josiah's feed over the stroller.

We were able to get more rest today.  Thank you for all your support, prayers, and encouraging words.  


Blessings,

Elizabeth and Graham