Daydreams

It was a great day.  We made it to church this morning and although Josiah didn't last too long in the service, he fell asleep quickly in another room where I was able to listen to the sermon.  I did have a nice daydream while I was holding him and singing in the service.  I daydreamed that I looked down at him and his lips had turned red, really red.  His lips have only ever been red once - when he was on ECMO in the hospital because all of his blood was being oxygenated (outside of his body).  It actually looked weird and bizarre in the hospital, of course he was also completely sedated and muscle relaxed and at risk of having a stroke.  Anyway, I thought that would be a pretty nice way for Josiah to get healed!

Josiah ate well during all of his meals.  Usually he fusses a lot between bites at dinner but tonight he was happy.  The nurse today was also here last Sunday and she has tons of experience and loves to cuddle babies.  Josiah enjoyed being cuddled so we all had a nice nap this afternoon.  The weather was perfect so after supper we enjoyed some time in the backyard.  Graham gave Isaac a little glove and ball today.  His eyes lit up when we gave it to him.  He needs a little practise.

Both boys went to sleep well and usually they are down until the morning.  We're not sure what we're doing tomorrow for Canada Day as it sort of depends on the weather and how we're feeling.  We don't have a nurse tomorrow.

Thanks so much for your prayers!

Blessings,

Elizabeth

Proverbs 30:5
Every word of God proves true.  He is a shield to all who come to him for protection.

Thumbs up!

Thumbs up from Josiah!

I'm tired.  New nurses take extra energy, a commodity that's consistently in low supply.  Thankfully this nurse will be with us again in a couple of weeks for three Sundays in a row so hopefully Josiah will get used to her.  There were a number of times today when Josiah had lovely smiles and contagious laughs but there were also quite a few times when he was very upset, more than normal.  He slept on me for part of the afternoon.  Thankfully, Graham took the early shift first thing this morning and he's washing syringes now and just returned from buying groceries.

Unfortunately it's often when I'm most tired that I feel the need to do random things like check Google News or read a blog.

In the morning we were able to have a little family time in the backyard.  There were a few drops of rain when we went outside but it held off so Josiah could have a good swing while Isaac had fun throwing his ball. 

Tonight I tried to go through our nursing schedules for July and August to figure out which hours are CCAC and which are insurance and when we should request nursing.

It was nice to see the boys together on the chair this morning.

Thanks so much for your prayers!

Blessings,

Elizabeth

Proverbs 29:25
Fearing people is a dangerous trap, but trusting the Lord means safety.

Choosing contentment

I was put to the test last night.  Date night turned out to be a little different than expected, but still very enjoyable.  When we arrived at the B&B, we were told that the room I had booked wasn't available as it had already been booked and there had been a miscommunication.  Our "upgrade" did not have a jacuzzi or an ensuite washroom.  We're a little picky.   I don't think we've ever stayed in a B&B without an ensuite washroom and last night was not going to be the first time.  I immediately thought, "Why did I blog about this today?" and then I remembered what I had typed about disappointment and contentment and decided to try to choose contentment.

We went out for Menchies and then to a toy store where we hadn't been before.  We were able to pick up a couple of small things for the boys.  Then we went to Chapters and were able to find some gifts there that we needed.  We also found mugs with cursive letters on them (G&E) so we splurged for $4 each.  We had a great time.

Then, we showed up in my parents' driveway just after 10:00 PM and I called them on the cell phone and asked if we could borrow a movie.  We spent the night in their lovely guest room and then Graham and I went out for breakfast after sleeping in.  We remembered to turn off our 6:00 AM alarms but we woke up to our 7:30 AM alarms.  This is a nice excuse to go to a B&B later this summer.  The nurse that stayed over last night gave me her available dates for another overnight stay.  This time we should be able to figure out the nursing, go out for dinner together, and book everything in advance ... and try to choose contentment if things don't work out - because some things really shouldn't be a big deal.

The boys did well overnight and today.

The dietitian called me this morning.  She's suggesting that we stick with having a feed every three hours for now but to drop one feed (we'd drop the last one of the day at 9:30 PM).  For the next 3 days we'll run his current feeds over a half hour and make sure he can tolerate that.  Then, for the following 3 days we'll change five of his feeds to 110 mLs and the final feed to 50 mLs.  After that we'll drop the final feed and the other five feeds will be 120 mLs.  Then, perhaps in September we'll move to feeds every four hours and perhaps try to drop another one of his feeds.  That will work out well for getting to church in the summer at a reasonable time (less than a half hour late).  Today he's done well with the feeds being run over a half hour.  Thank You Lord!

I went into Isaac's room this morning and found all of his books on the floor (top photo).   I asked him why he had taken all of the books off of the shelf and he responded, "I love you Mommy." 

One of the gifts we bought at the toy store is a red plastic tube that makes a noise when it's turned over.  Josiah loves the sound it makes and kept laughing over and over again (that's why he's laughing in the photos). 

We have a new nurse tomorrow from 1:00 PM to 9:00 PM.  Hopefully all goes well. 

Thank you for your prayers!

Blessings,

Elizabeth

Proverbs 28:23
In the end, people appreciate honest criticism far more than flattery.

Date night!

God is really too kind to me - even when I'm disappointed and possibly whiny.  I was hoping today would work out a certain way so that Graham and I could go out for dinner before our night out.  We have nursing from 7:30 PM to 7:30 AM tomorrow.  That in itself is such a gift.  Anyway, given that it's later when we can leave I wasn't sure if it was worth it to book a B&B and the one I wanted said it was unavailable on its online booking.  The thought came to me that I should just call anyway so I did and they had two rooms, including the one I wanted.  Thank You Lord! 

We've had a good day.  Graham's parents are here to spend the night to take care of Isaac.  We'll have a lovely dinner together before we leave.   

Do people actually get to the point of being disappointed about something and yet being completely content knowing that God has something else in store?  I don't like the idea of having zero expectations so that they are never crushed.  But time and time again I've been disappointed about something and then something better happens.  Is this just part of the journey of increasing my faith in a God who loves me and has good gifts for me?

Time has passed.  Dinner is ready.

This is Isaac's "game" - I think it's modern dance

Isaac and I had fun on our porch today.  It was just raining a little.  Josiah was able to go out for a stroller ride this afternoon.

Josiah is eating well of late.  He enjoyed some small pieces of strawberry at lunch and some of Grandma's peaches for dinner, among other things.

Thank you for your prayers!

Blessings,

Elizabeth

Proverbs 27: 20
Just as Death and Destruction are never satisfied, so human desire is never satisfied.

Fresh

I slept in Josiah's room again last night.  He has woken up in the night the last two nights but he just cries briefly and falls back to sleep.  I didn't need to get up.  It's possible that his oxygen is bothering him.  Due to the humidity differences, there is some condensation in the tube and every so often I hear it as it gets to his nose.  It's a little frustrating because he really doesn't need water going up his nose.  

Isaac had fun in the backyard while Josiah enjoyed his long stroller ride this morning.  The nurse usually says Josiah is "fresh" after his time outside.  These photos are from when he returned.  The nurse lifted him up and down quickly and made him laugh.   

Isaac always gets excited when I tell him that his volunteer is coming to see him after his nap.  His face lights up.  I called the Hospice this morning to ask them to get a message to the volunteer to come a half hour later.  Isaac now has lunch a little later and consequently he needs to sleep later.  He was much happier this afternoon when she came compared to the last few weeks.  I don't even want to think about him one day giving up his naps.

Our good doctor returned the faxes so we will be able to pick up our items from the pharmacy on Friday. 

Isaac and I went out and were able to purchase a replacement for the chair that was broken yesterday.  I feel much better now that I have something to give to the physiotherapist.  It's a different colour but I don't think she'll mind (I hope she won't).

Isaac told me he had his lunch box today (he was "heading to work" so I kissed him goodbye).  I asked him what he was having for lunch.  He answered, "Cookies and salad."  Where does he come up with this stuff?

I think my hearing is getting worse.  I was praying with Isaac yesterday at bedtime and he interrupted me to say, "A little bit loud, Mommy."

I'm praying for a couple of babies waiting for hearts at SickKids.  The one mom has a blog to which I was recently introduced.  I read about familiar sights and feelings and people.  I can picture them.  They are trusting in God, praying, and hoping.  

Thank you for your prayers!

Blessings,

Elizabeth

Proverbs 26:12
There is more hope for fools than for people who think they are wise.

Today's details

A friend invited me out to lunch today and we went to a nice little cafe with local and delicious food.  It was definitely the highlight of today.

I slept on Josiah's floor last night.  Isaac woke up about midnight.  If he becomes untucked from his sheet and blanket he wakes up upset and needs some help getting tucked back in.  We had a couple of fans going in our room and I get a little nervous that I won't hear Josiah if he cries so I felt better sleeping in his room.

Graham's bus came early this morning so Isaac and I drove with him to work so that I could have the car.  We stopped at the library on the way home and dropped off some items that were due.  We went home and I made up Josiah's feeds for 24 hours and sent an email to our nursing agency.

Isaac's cousins were with my parents today so we went over in the morning and he had fun all day.  I came back home at 11:25 because Josiah had an 11:30 appointment with the dietitian.  No one was home when I arrived but there was a message from the dietitian saying she was there at 11:15 and no one was there.   I called and left a message to say that I had the appointment written down for 11:30 and Josiah was having a stroller ride.  She said she'd come back at 12:15 at which point I was on my way to meet my friend.  At 11:40 our nurse and Josiah were still not around.  This has never happened before at an appointment time so I went out in the car around the neighbourhood for a few minutes and they were just reaching the driveway when I returned.  Our nurse just hadn't realized that there was an appointment so I was glad there wasn't any other reason for not being there.  I was also glad that Josiah was able to enjoy a stroller ride.  I left my questions for the dietitian with our nurse.

The dietitian left an application form that I need to get Josiah's doctor to sign and then sign it myself and mail it away.  I'm not exactly sure what's happening because we've been covered for feeding supplies through CCAC and now we're applying to something else for feeding supplies.  The dietitian also brought a large box of feeding systems.  I think they are the ones that we used at McMaster Hospital.  I'm sure they are great but I'm afraid I don't welcome change with open arms.  It's something new to think about and another large box to store somewhere.    

On my way back from my lovely lunch I stopped at the pharmacy and they had what I had ordered but instead of a two week supply, it was a six day supply that will get me to Sunday because the full prescription from our doctor didn't come in.  Our pharmacy isn't open on the weekends and we need to give them two days to fill prescriptions.  They are a compounding pharmacy and it was one of two that were recommended to us.  We can't just go to any pharmacy.  So, I'm hoping the doctor faxes the form on Wednesday (along with the other fax about the other drug) and then it can be ordered so that I can hopefully pick it up on Friday.

I arrived home around 2:15 and saw the physiotherapist's car out front and then realized she was sitting in the car.  It turned out that she'd been there a while and rang the door bell and called our phone but our nurse didn't hear because Josiah's room has the air conditioner on and thus we keep the door closed.

Anyway, the PT was happy with Josiah's progress.  It seems to be slow but steady (she hasn't used the word slow).  She's happy he can turn himself in the exersaucer (both ways) and is sitting a little better (when he wants to) and doesn't mind being on his tummy as much.  She'll be on holiday for a couple of weeks so we'll see her next in mid-July.

The PT also brought a new chair for Josiah to use and he liked it right away.  Tonight, we broke it.  I went to a store to try to find one tonight but they didn't have any (I tried to call first but that didn't work).  I think I've found one online that I can buy tomorrow to replace this one.   I'm happy he'll have a new place to have fun.

The doorbell rang and there was a man with a delivery for Josiah from the place where we order medical supplies.  I said I didn't ask for delivery and didn't want to pay the $10 delivery charge.  He said, he'd let them know and he gave me the package.  I called to ask about this and was told that when our visiting nurse put our order in, that delivery was checked off.  She said that I might receive a bill in the mail and that I should contact CCAC about it.  I hung up.  I thought about this for a little while and then called back.  I said that she knew I hadn't asked for delivery and I've never had delivery so I shouldn't receive a bill in the mail.  She then said that she could get her supervisor to call CCAC.  I said that would be wonderful.

I then ran out to pick up something at the store and was back just before the nurse left at 3:30 PM.  Josiah had a good sleep then so I was able to focus on dinner.

Josiah was happy to see me this morning when I stood up from the floor after 6:00 AM.  He's still very happy in the mornings.  After I get the feed and the drugs and change his diaper, I now try to cuddle him on the chair until he makes it clear that he wants out of my arms.  Then he goes back into the crib and he usually falls asleep quite quickly. 

Graham had mentioned the other day that he'd had to pay more than usual at the pharmacy.  This afternoon before I started dinner I found those receipts and earlier receipts.  I called the pharmacy to ask about this and it appears that one drug wasn't put through our insurance for some reason even though other drugs were.  We've never had to ask about this before.  She was very apologetic.  I will now need to find the papers to fill in for the insurance claim.  We'll see if that happens. 

More good news is that I received the two NG tubes that our cousin picked up at SickKids and mailed to us.  I also found out from our visiting nurse that we received approval from CCAC for the NG tubes so we should be able to get them now when we need them in the future.  It's nice to know there's at least one on hand for when we need it. 

So, that was my day.  I'm glad my parents convinced me to have a little nap this morning.  Thanks so much for your prayers!

Blessings,

Elizabeth

Proverbs 25:28
A person without self-control is like a city with broken-down walls.

Escape

We escaped the heat and humidity at my parent's home today and I think that's the plan until a reasonable level of comfort is achieved in our home.  Josiah and his nurse hung out in his room which is nice and cool.  He had a good day but I'm sure he's missing his stroller rides. 

I returned home when Isaac started his nap so that I could do some errands.  Today was the first time our nurse heard the word errand.  He also learned the word puppet after he told me how much Josiah loved the green dragon in the bath.  He said that Josiah was almost jumping out of the bath he was so excited!  That's always nice to hear. 

We had a new nurse tonight.  There was a meeting in our home which Graham was part of so it helped to have an extra set of hands while I put Isaac to bed. 

We were excited to learn today that Graham's younger brother and his family will be flying in on Sunday night.  We can't wait to see them and Isaac is looking forward to playing with his cousins. 

I'm reading a book about loss that a friend recommended.  It compares permanent losses to those that are temporary or seem to be, saying, "You have a situation in which there is no closure.  Thus there is a recurring sense of loss."  My friend, who has experienced great loss, said that I have experienced losses with Josiah.  I haven't thought about it like that before, though I see that it is true.  I heard the word disability in reference to Josiah a week or so ago and I haven't thought about Josiah like that either, though I clearly have a 14-month old who cannot crawl or even drink his feeds and would not live without a tube for medicine and another for oxygen.  It seems quite reasonable that it would be good for me to process some of this.  Perhaps the book will help.

I also see all that I have that I might not have and for that I am thankful.

I called the pharmacy this morning to order some drugs.  I asked about the fax from the doctor but it hadn't arrived so I called the doctor's office again and left a message because it was closed until 12:00.  I called later and the doctor wouldn't be back until Wednesday but the receptionist called the pharmacy with the doctor's verbal order for a two-week supply.  I then called the pharmacy again to also order some other medicines and discovered that I needed our doctor to okay another drug so that will happen on Wednesday I hope and then we can pick up the drugs on Thursday.   

Thanks for your prayers!

Blessings,

Elizabeth

Proverbs 24:26
An honest answer is like a kiss of friendship.

Ice cream

Isaac insists on having a warm cover in bed

We all made it to church this morning and Josiah wasn't too fussy.  I was able to push him in his stroller at the back of the church and he fell asleep for a while.  He might have slept the entire service except that I tried to move the stroller to get a better look at him and that woke him up.

Thankfully I was able to be in the sanctuary for the dedication of our friends' baby boy.  We thought Isaac might want to stay with us in the service but as soon as the announcement was made for the children to leave, Isaac took Graham's hand to leave.  I told him he wouldn't know the other children but he didn't mind and he was fine.

Our nurse arrived at 1:00 PM and by 1:30 PM Josiah had finished his feed and was snuggling in her arms after I rocked him.  We woke him up at 5:00 PM to play a little before supper.  He usually sleeps from around 3:30 - 5:30 so perhaps church or the heat outside tuckered him out.

We were all able to have a nap this afternoon.  Graham took Isaac out for a kiddie ice cream cone.  Isaac enjoyed his daddy date.

Josiah tried a little pea soup and some avocado tonight.  He seemed to enjoy both.

I like this quotation that I read today:  "Living a life of faith in Jesus Christ is far less risky than living a life of faith in yourself.  Trying to control your life imprisons you in the need to be in control.  Trusting in His control leads to a life of freedom rather than a life of bondage." (H. Norman Wright)

Thank you for your prayers!

Blessings,

Elizabeth

Proverbs 23:12
Commit yourself to instruction; listen carefully to words of knowledge.

It's a sauna!

Tomorrow we'll have a new nurse from 1:00 - 9:00 so I want to redo Josiah's syringe bags so that all of the information is current.  I've been waiting until I had the answers from the pharmacist so now I'm able to do it.  Thus, this post may be short. 

We are so thankful for the air conditioner in Josiah's room as the rest of our main floor is a sauna right now.  He spent most of the day in his room but he had a good day and we all slept well last night thankfully.

We're looking forward to visiting a friend's church tomorrow to see their beautiful son dedicated to the Lord. 

Thank you so much for your support and prayers!

Blessings,

Elizabeth

Proverbs 22:9
The generous will themselves be blessed, for they share their food with the poor.

P.S. No photos today so these are older ones.

Details

Josiah enjoyed rubbing the soap on his tummy!

We all slept well last night so that was a treat.

I was quite tired yesterday morning so I had decided that I would have a nap when my in-laws arrived around 10:00.  First, I just wanted to quickly call the hospital where I usually get Josiah's NG tubes (and have done so since last December) to ask if my parents could pick up a tube as we inserted our last one on Monday.  Last time I needed tubes they gave me two.  I was told that these tubes were a special order and they didn't have any in stock.  I said that the previous time they had gone to the paediatric ward for them so they said they'd check and call me back.  They called me back and said that there was only one left.  They were willing to give it to me but I said I wasn't going to take their last NG tube of this type (I think I regret saying that as I didn't realize at the time what a hassle it would be to get a tube).

Fun with the new bath puppet

I asked if I could order the tubes through the hospital and I was told that I should call my pharmacy.  I asked what would happen if I had to bring Josiah in for a tube change and I was told that they would use their last one on him.   I asked if they would order more and I was told that they would probably order just one because they don't use them often.  I was told that I should be getting these tubes through home care but I explained that community nurses are not allowed to order them as they are not allowed to insert them because they are weighted and they are the ones our nurse practitioner at SickKids said we should use (SickKids hospital trains parents to insert them before they leave the hospital). 

I have awesome skills! 

I called the pharmacy but their suppliers don't carry them.   I was in the middle of writing an email to our CCAC case manager when I thought I would call the company where we get our medical supplies.  They had 10 in stock.  They told me the price was around $43.  I said, "For how many?"  She answered, "For one."  Are you kidding me?!?!?  That's crazy!  I was told that CCAC may not be charged that amount but I would be as a parent.

I finished my email to the case manager and she replied right away to say that CCAC has sometimes approved these in the past.  She spoke with the nursing agency and they are going to see if they can get a special authorization.  In the meantime, I need an NG tube as that is how Josiah receives all of his medications and most of his nutrition.  She also wrote that we need to put in an application for something but said that she would ask our dietitian to initiate this so I'm under the assumption that I don't need to think about this so it is off my radar. 

I was pretty sure that SickKids would give me a couple so I emailed and I received a call to say that they would.  We asked one of Graham's cousins to pick up the tubes as she works quite close to the hospital (and she's awesome).  The tubes are already on the way to us via Expresspost.  Thank you!!!

I also called our doctor's office to ask about a fax that our dietitian sent last Friday.  The receptionist found it in a file and said she would pass it on to the doctor to then be faxed to the pharmacy.  I'll call the pharmacy on Monday to see if it arrived.

I called the pharmacy yesterday to set up a meeting for today but that timing didn't work out for them so a pharmacist answered my questions on the phone for half an hour yesterday and gave me her email address so that I could send additional information about potential vitamins for Josiah so that she can figure out when he can have the vitamin so that it won't interfere with his numerous medications.  I've been hoping that I can discontinue his 2:00 PM meds and just give them with the 3:00 meds and feed but it seems like there are three medications that shouldn't all be given together as they all decrease his blood pressure.  The pharmacist thought Josiah's blood pressure should possibly be checked regularly but suggested that I email my contacts at SickKids so I did that and it sounds like it's a good idea but they don't expect it to be a problem as he's been on the drugs so long.  I asked our visiting nurse about this today and she's going to look into whether or not she can obtain the equipment to check Josiah regularly.  After my conversation with the pharmacist I wondered if Josiah is "spaced out" at different times during the day due to his blood pressure being low.  He's usually so happy in the morning and I've assumed it's partially because he's not drugged up at that time.

I typed up the additional questions and information for the pharmacist and sent her an email.

Needless to say, I didn't nap yesterday morning.  I was heading for a nap this morning when the visiting nurse arrived so I asked her about checking Josiah's blood pressure.  I then looked to see if I had any 1 mL syringes in the box in my closet.  I was excited to find two types that must have been ordered when we returned home.  The syringes we've used since November are the ones that SickKids used for Josiah's medications the last few days of his stay.  We saved them and we wash them every night and reuse them.  We've recently discovered that there have been a few "almost medication errors" with the 1mL syringes as they show both millilitres and drops.

A couple of times a nurse has drawn up the medication using the drop measurement instead of the millilitres.  Thankfully, this is always underdosing as opposed to overdosing.  If we have a nurse until 9:00 PM, I ask them to draw up the 9:30 PM meds so a couple of times I've discovered the mistake after the nurse has left.  I originally thought this was due to one nurse's inexperience but then a very experienced nurse did this so I realized that the syringes aren't as safe as they should be.  She took responsibility right away and felt awful.  I certainly wasn't upset as I know we can all make mistakes.  It was helpful to find out that nurses in the community are not used to these syringes as they are hospital syringes.  She wrote up a note in the chart to warn other nurses and suggested that I tape up a syringe to point out the two measurements.  A nurse from church suggested that I just get new syringes through CCAC.  Great idea!  So, that's why I was checking for syringes today.

I found some which were luer-lock syringes so I thought they wouldn't work on the NG tube but in my tube research yesterday it said that they work with this type of syringe and sure enough it did.  There were also some other regular syringes that weren't luer-lock that I could use so I threw out the 1 mL hospital syringes and I was excited about decreasing the risk of errors.  Tonight I went to draw up a medication with the luer-lock syringe and then remembered why I had packed these syringes away.  The luer-lock syringe tip will not go into the stopper in the medication bottle.  The regular syringe is too small in diameter so if I turn over the medication bottle, medication spills out.  Sweet Graham retrieved the hospital syringes from the garbage (most of them were contained in a bag) and then he washed them all.  Too bad.  Now that I know it's an issue I will be sure to highlight it when I train his new nurses and I should probably tape up an example.  

I remember reading in a blog that one mother was concerned that her son would die due to a medication error.  I don't think I've thought about this as a possibility.  A few weeks ago I discovered an "almost error" with medication.  One medication had been drawn up in two different syringes, one of which was in place of another medication.  If this error hadn't been spotted, Josiah would have had six times the regular dose of one medication that affects his blood pressure.  This helped open my eyes to the potential danger, though we're not living in fear about this.  We thank God for protecting Josiah once again.  Usually we can look at Josiah's tray of meds and know if something is wrong because we are so used to the norm.     

I re-sent our nursing requests to the nursing agency yesterday as my original email had been lost.  I heard back with a number of different options and questions which Graham and I discussed last night and I sent back our responses today. 

Graham just returned from the grocery store as we were out of Pediasure for Josiah and he seems to like being fed every day. 

I just thought I'd share a few of the things that occupy my mind and my days.  I really hope this post didn't seem like one big complaining rant because it wasn't meant to be.  As I said yesterday, God is opening my eyes to see the legitimate reasons why this is a tiring season - though a blessed season as well.

Thank you for your prayers!

Blessings,

Elizabeth

Proverbs 21:13
Whoever shuts their ears to the cry of the poor will also cry out and not be answered.

Have you read: A Letter to the North American Church: Because it is Time - June 20, 2013 (Ann Voskamp)

Jumping Rabbits

Pet Peeve:  Walking into Josiah's room at 10:40 PM and finding that his feed stopped working, probably about an hour before.

It was a bit of a crazy day following up on various things to do with Josiah, all from the comfort of my home.  I don't have time to recount it now but it had to do with NG tubes and drug schedules, and pediasure faxes, and blood pressure monitoring, and nursing schedules, etc.  Thankfully my parents dropped by and then Graham's parents were here until Isaac went to bed and then my mom stayed to be with Isaac while Graham and I were out at separate meetings tonight.  Our awesome nurse came from 10:00 AM until 9:30 PM.  He'll be back here at 7:30 AM tomorrow.  I think God is showing me that there are very legitimate reasons why I get tired and it's not all mental stress. 

I just looked at my calendar and it says that summer begins tomorrow.  That's exciting!  It's definitely a reason to smile.

Isaac is too cute sometimes.  He loves to dance, especially in the evening and after his bath.  He also often gives names to his dances.  Tonight he was doing the Raccoon Dance.  He came up to Grandpa F. who was sitting on the couch and gave him his hand and said he'd help him (with the dance, as I understood the story).  He was showing Grandpa some pretty awesome moves - though I am happily very biased about his two year old talents.

He's a little less cute when he's defying me loudly with his big blue eyes.  He told me today that he didn't love me (I think I wanted him to go to the potty or something terrible like that) but I was quick to let him know that he does love me very much.  He later told me a lovely secret that confirmed his love. :)

He was watching part of a DVD about instruments today and he told me that it looked nice and would like to do it someday.  I think he liked various instruments but told me he'd like to play the drums.  We'll see what happens.

I put on a video for Isaac in the living room when we are doing something to Josiah that will look unkind and make Josiah scream and cry and there is no one else to be with Isaac.  I don't want Isaac to be watching us or concentrating on Josiah's cries.  We did this on Monday when we inserted Josiah's NG tube and I did this again this morning when we needed to suction Josiah's nose.  It's not nice for him.  We need to remove his oxygen tube briefly while we do this and then put a tube up his nose a little ways in order to clear it out.

Isaac's excitement for the day was going to the park with Grandpa and watching rabbits jump on Youtube.  Who knew that rabbits have jumping competitions like horses? 

Josiah had a pretty good day today.  He enjoyed his walk outside and gave away some precious smiles.  His nose sounded quite congested this morning and he was coughing a little but he seemed better through the day.

Thank you so much for your prayers!  We definitely need them.

Blessings,

Elizabeth

Proverbs 20:12
Ears to hear and eyes to see - both are gifts from the Lord.

So blessed!

It was lovely to have a play date with friends this morning.  It's nice for Isaac to be able to play with other children ... and to practise letting someone else choose which plate or bowl to have first. 

The nurse thought Josiah looked more blue today but he had a good day and enjoyed his time outside.  We had a nurse tonight from 6:00 until 9:00.  She draws up the medications for the rest of the evening so that's one less thing to do. 

Once again we were blessed with meals tonight.  People are incredibly generous.

Thank you for your prayers!

Blessings,

Elizabeth

Proverbs 19:18
Discipline your children while there is hope.  Otherwise you will ruin their lives. 

P.S. I didn't take photos today so these are older.

WOW - I get to live this life with these gorgeous boys and such an amazing husband!  Thank You Lord!

Laughing

Laughing at Grandpa

It was a good day with lots of smiles and laughs from Josiah.  He went for a long walk with his nurse while my mom and I went to the library with Isaac.  The nurse was saying that he notices such a difference in Josiah as he now takes a long time to fall asleep in the stroller as he's taking everything in and keeps turning his head. 

Josiah has been eating a good amount of food at meal times.  He's started eating tiny pieces of toast and he likes baked beans and small soft pasta.

It was lovely to have a visitor over this morning.  

Laughing at Daddy

I tell Isaac to stop his whiny voice many times a day.  I confess that it's tempting to be whiny sometimes or at least think whiny thoughts, especially around 8:00 PM when both boys are hopefully asleep (Josiah finally fell asleep with rocking at 8:15 tonight).  I decided to have a little "me time" so I picked up the paper and read about refugees ... and quickly remembered that I have no cause to be whiny.  I can be tired but I need to be grateful as we are blessed abundantly.

I convinced myself to not have a nap while Isaac was napping so that I could get some work done around the house.  However, after Isaac woke up, I actually fell asleep reading to him (I shouldn't have asked him if he wanted to read on Mommy and Daddy's bed!)  I regained full alert status when Isaac bit my finger hard.  He ended up sitting on his chair for biting but he probably just wanted my attention (not that I make excuses for him when I am in his hearing).  

Thank you for your prayers!

Reading to Baby Josiah

Blessings,

Elizabeth

Proverbs 18:10
The name of the LORD is a strong fortress; the godly run to him and are safe.

NG Tube Change

I set my alarm so I would be sure to change Josiah's NG tube this morning.  We did it around 8:00 AM as I like Graham to be here.  Graham prayed for it to happen the first time and I think it was the best we've done so far.  I do find it easier to insert the tube into his left nostril than the right one.   It's been quite a while since he's pulled out his tube so I think we've improved our taping a lot since we first returned home.  Thankfully we figured out which tapes cause him the least irritation. 

Isaac had a good time using the watering can to water our plants outside.  He enjoyed getting water from the rain barrel.  Isaac said, "No!" very loudly to me today and then later to Graham.  He likes to test us.  We need continued wisdom in raising our boys. 

My dad and Josiah had a lovely nap together on the chair in his room this afternoon.  Josiah falls asleep to Grandpa's songs. 

I can't remember if I previously wrote this but Josiah is now turning himself around in the

exersaucer to some extent so that's nice to see.  He's still trying to turn over in his bed. 

We like putting the oximeter on Josiah at night as it will alert us if his oxygen sats go lower than usual.  I have to put it on his toe after he falls asleep or he would take it off right away.  Usually he wakes up at night at some point and he seems to immediately go for the cord that's attached to his toe.  He takes it off (he can get his socks off too) and then the sensor beeps off.  Most babies do not have tubes attached to them so sleeping is a little more hazardous for him.  I've walked into his room and found tubes around his neck.  That's another reason that it's nice to have the oximeter on but it's certainly not good for my sleep to wake up when he wakes up.  Last night the sensor went off sometime after 1:00 AM so I put the machine off and left him.  Around 4ish, either he or Isaac cried out (the nights are always blurry) but before I went back to bed I watched Josiah breathing and it seemed really shallow so I put the sensor back on him.  It went off again shortly after 5:00 AM when he woke up so I went in again and put it off.  Not ideal. 

Tonight I went in a couple of times and found the tubes all over the place.  I put a bean bag on the tubes but that doesn't stop him.  He's a lovely, cheeky boy.

Thank you so much for your prayers!

Blessings,

Elizabeth

Proverbs 17:6
Grandchildren are the crowning glory of the aged; parents are the pride of their children.

Happy Father's Day!

Happy Father's Day!

We left home before church started this morning but unfortunately we forgot about a road closure so we were stuck waiting in traffic for a while.  Josiah lasted longer than usual in the service and after that he was content for me to push him back and forth in the stroller while I stood at the door listening to the sermon.

I confess that I was wondering if we made the right choice about asking for a nurse before she showed up but she was lovely and it certainly helped to have her here while we prepared for our picnic.  We all went to Victoria Park along with my parents and my brother and sister-in-law and our nieces.

Josiah has seemed to be "spaced out" a few times today but I'm hoping it's because we keep waking him up right after he falls asleep (when we arrived at church and then when we arrived home and when we left for the park and arrived at the park).  On the one hand it's tempting to let him sleep and I could just stay in the car with him or stay home with him but then he would miss out on great things.  During the week, he usually gets to sleep when he wants to sleep.

Often I wonder why this life is so tiring.  The little guy just has a couple of extra tubes ... and a few other challenges.  Graham thought that part of it is that we are limited as we need to think about Josiah's next feed and meds every few hours.  Along the same vein, I think this life is mentally taxing just because there are so many extra things to think about.  They may not be difficult things but there are a lot of details that we don't want to miss.  Even little thoughts like, "If we ever have to go to the ER, we need to make sure we grab Josiah's drugs because it can take a while before we can get them."  Thankfully we thought of that the last time.  It was even great that we took them to McMaster because we couldn't get one of his drugs there.

A friend with three small children dropped off a lasagna for us!  She is a Super Mom!  Thank you!

Thank you so much for your prayers!  Isaac and Josiah are blessed to have the best daddy and grandpas and of course, I am so blessed to have them all in my life.  God's gifts are amazing. 

Blessings,

Elizabeth

Proverbs 16:24
Kind words are like honey - sweet to the soul and healthy for the body.

P.S. I've included a photo of the picture Isaac made for Graham in Sunday School.  I think this displays his advanced understanding of the gender roles. ("My daddy likes to go to work.  Mommy likes to colour.")

A gorgeous day

While Josiah went for a walk with his nurses (one nurse is shadowing the other one), Graham, Isaac, and I went to the City of Waterloo's Service Centre Open House.  What a great event!  You get to see the city's big trucks, excavators, dump trucks, a fire truck and a lots of other vehicles and equipment.  You are also allowed to get on them and in many cases you can go for a ride in them.  There was also a petting zoo, face painting, and free popcorn.  We saw one of our nurses there with his children as well as a family from our church. 

I think Isaac's favourite part may have been the balloon and the popcorn.  The horn on some of the trucks is very loud and Isaac is not a fan of loud noises.  I asked him a few too many times if he'd like to go on one of the trucks with Daddy.  He started crying loudly so I assured him he didn't need to go on any of the trucks.  He was glad to see the trucks though.  Actually, the one thing he asked to go in was the Jumpy Castle but I watched the children in there and knew he wouldn't last for more than a moment.  It was lovely to have some special time with Isaac and it was a gorgeous day to be outside. 

Graham and I were able to have a nap in the afternoon while Isaac napped.  We went out after supper.  Isaac received a "parachute man" at the carnival last week so he and Graham went and tried it out. 

A couple of nurses have commented that Josiah seems to be sleeping more. 

Isaac was telling me today at different times that his teeth were singing or his back was singing as he was moving those body parts.  He makes us laugh every day. 

Thanks so much for your prayers!

Blessings,

Elizabeth

Tonight's discovery: Josiah likes tickles on his back

Proverbs 15:15
For the despondent, every day brings trouble; for the happy heart, life is a continual feast.