I picked up Jacob from respite yesterday with a stomach bug :( I wasn't excited, yet thankful that it wasn't a respiratory bug. He seems to be doing ok today, so hopefully it doesn't develop into anything worse. I'm remaining optimistic :) He was quite content today, which speaks loud and clear in his life!!
Jacob is having more and more time with his splint off. He's been doing amazing!! His leg/knee still looks swollen, but that's a positive thing right now, so I'll take it. His body sure went into overdrive making new bone growth :) We are indeed fearfully and wonderfully made! When I hear how our body works and reacts to situations, I stand in awe at God's handiwork!!
Appointments have been few of late, so we've been able to spend most of our time at home. That's a good thing considering we've had some fairly snowy days around here lately, and none of our appointments are super close to home.
Our case manager is off and away to another country for a couple weeks, which means she doesn't have her work phone with her :( This makes me uneasy. She's been my sounding board for 2+ years. She's often been the first one to hear my fears, joys and frustrations. I'm hoping that she has a great holiday (she deserves it) and that she comes back feeling refreshed.
I've realized that I've taken on a new thinking process regarding Jacob's life. Whenever we would hit a milestone (birthday, Christmas etc,) I would think that this would be the last that we would have with him. It occurred to me that as I was thinking about Christmas time and what Christmas 2014 would mean for us, I thought there is a possibility we will make it! I wasn't thinking we won't make it, but the possibility is there. If God has brought us this far, who's to say, He won't bring us another year??!! He is able, and as a family, we must be in subjection to His will.
Tuesday 17 December 2013
Saturday 23 November 2013
One Year Anniversary
Today marks the one year anniversary of a great milestone. The first thing that I heard out of Breanne's mouth this morning was: this day last year you came home from the hospital with Jacob. What an observation. That was also our last hospital discharge for a pneumonia. Wow. 2013 has been a year of ups and downs, but respiratory wise, it's been a great year overall. I'm feeling blessed, thankful and humbled to God for his gracious and patient dealings with us, as a family.
Considering last year, leading up to November, Jacob was hospitalized every 6 - 12 weeks. To go 52 weeks with no hospitalization is simply amazing. (He did have one bought of pneumonia in February, but we were able to treat him at home.) Talk about a positive change overall. :) I truly feel for those families who call the hospital their second home. That lifestyle is hard on the child, parents and siblings!! Life is so much easier for everyone involved to be home! Going though last year's November pictures, confirmed that very thought!!
This week has lead to more talks with the doctors to figure out Jacob's irritability. He didn't have the best admission at respite, like we were all hoping for. He was quite irritable for the first few days at home also, but yesterday, he had a great day. Bizarre!! I sure can't explain it!! We have a new medication that we can use, but I think that may be put on hold, if he's going to be so content. YEAH. We have all enjoyed a couple easier days again, including the night nurses.
Considering last year, leading up to November, Jacob was hospitalized every 6 - 12 weeks. To go 52 weeks with no hospitalization is simply amazing. (He did have one bought of pneumonia in February, but we were able to treat him at home.) Talk about a positive change overall. :) I truly feel for those families who call the hospital their second home. That lifestyle is hard on the child, parents and siblings!! Life is so much easier for everyone involved to be home! Going though last year's November pictures, confirmed that very thought!!
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| Dear Lisa giving advice and encouraging us, once again. What a blessing it is to have her still involved in Jacob's care!! |
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| Sporting the nasal prongs. He's grown so much in one year! |
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| Keeping Caleb entertained at the hospital was a tall tall order!! Those eyes say it all :) I love that boy, even though he was such a challenge at the hospital! |
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| Sheryl was deep in thought. Many times words would not be spoken. The words weren't needed! We understood each other in the silence. |
This week has lead to more talks with the doctors to figure out Jacob's irritability. He didn't have the best admission at respite, like we were all hoping for. He was quite irritable for the first few days at home also, but yesterday, he had a great day. Bizarre!! I sure can't explain it!! We have a new medication that we can use, but I think that may be put on hold, if he's going to be so content. YEAH. We have all enjoyed a couple easier days again, including the night nurses.
Wednesday 13 November 2013
Some Answers
Wow, talk about appointments all in one week!! Today alone were three. And the worst of all...the last one took three hours :( What a lengthy process.
This morning was another reminder that it's not what you know; it's who you know (and who they know.) I had called the ortho clinic with little success. Our physiotherapist hears that and gets on the phone and a couple of phone calls later, an appointment was booked for 12 noon today. Off we went. After a LONG process, Jacob was seen by the doctor, who said that Jacob needed a soft splint cast. He was afraid of skin break down with the fibre glass cast. The removal of the cast did show some moderate skin irritation. I couldn't believe how swollen his leg still was! The doctor explained that some was still swelling, and some was actually extra bone growth :) The bone growth is a good thing.
I'm hoping that this solves his extreme irritability issues. He may be fussy for the first day or so, as he adjusts to the new splint.
The respite home where he is now has worked with children with broken bones more often, so I'm thankful they can have their skilled eyes on him for a few days. They might be able to help us out with handling him too.
Thank you for your support during the past couple weeks. Your prayers have been most appreciated! It has been a trying time for our whole family, but we feel that God has a purpose for all things, so we submit to His ways.
This morning was another reminder that it's not what you know; it's who you know (and who they know.) I had called the ortho clinic with little success. Our physiotherapist hears that and gets on the phone and a couple of phone calls later, an appointment was booked for 12 noon today. Off we went. After a LONG process, Jacob was seen by the doctor, who said that Jacob needed a soft splint cast. He was afraid of skin break down with the fibre glass cast. The removal of the cast did show some moderate skin irritation. I couldn't believe how swollen his leg still was! The doctor explained that some was still swelling, and some was actually extra bone growth :) The bone growth is a good thing.
I'm hoping that this solves his extreme irritability issues. He may be fussy for the first day or so, as he adjusts to the new splint.
The respite home where he is now has worked with children with broken bones more often, so I'm thankful they can have their skilled eyes on him for a few days. They might be able to help us out with handling him too.
Thank you for your support during the past couple weeks. Your prayers have been most appreciated! It has been a trying time for our whole family, but we feel that God has a purpose for all things, so we submit to His ways.
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| His over-sized leg , and his not so over-sized leg. |
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| Sporting his new splint. |
Monday 11 November 2013
Prayer Needed
We have an important appointment tomorrow with our paediatrician. Since the cast change, Jacob's been FUSSY. Saturday was a good day, for Marije, but other than that, it's been a struggle to say the least. Morphine has been added once again to his medication regime :( We need to find out what's causing the extreme irritability, sweating and grinding of his teeth. Dr. Kerr knows Jacob's baseline (his norm) extremely well, so hopefully he can connect the dots to obtain a clear picture.
At the appointment we had today, Jacob was not happy! The physiotherapist is concerned the cast itself may be causing issues. We'll see what Dr. Kerr says. It can be difficult to diagnose a problem with kids that are non-verbal.
Please pray for Dr. Kerr to be given clarity in finding the root of the problem!! We've witnessed it recently how God can close the eyes to the doctor. That said, we've also witnessed the doctors eyes being opened to a clear and concise conclusion! May that be the way tomorrow!!
At the appointment we had today, Jacob was not happy! The physiotherapist is concerned the cast itself may be causing issues. We'll see what Dr. Kerr says. It can be difficult to diagnose a problem with kids that are non-verbal.
Please pray for Dr. Kerr to be given clarity in finding the root of the problem!! We've witnessed it recently how God can close the eyes to the doctor. That said, we've also witnessed the doctors eyes being opened to a clear and concise conclusion! May that be the way tomorrow!!
Thursday 7 November 2013
New Cast - New Look
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| The first cast - all decorated up :) Mostly by his loving nurses!! |
Thankfully I knew the procedures for such appointments, as Breanne had a broken arm 4 years ago. The fact of knowing the basics really helped, but adding Jacob to the situation made the whole event very different from Breanne's appointments. My biggest fear was that the sensory experience of the vibrating/noisy saw would put him into a seizure. I was prepared with meds.
Jacob first had x rays taken. That went without incident. We were seen by the doctor who wanted to straighten his leg. OUCH! I knew that would hurt BAD. The doctor we had, has worked on patients like Jacob for many years, so it was reassuring to have his skilled hands and his knowledge working on our boy. I was able to give him his sleeping meds 15 minutes before they worked on his leg. He had slight movements when the lady was taking the cast off, but other than he slept through that ordeal (good thing for head phones.) Once the doctor came and started working on his leg, he woke up and started crying hard. His whole body was vibrating. My mother heart was hurting just as much as Jacob was hurting physically. I just kept telling myself that this is for Jacob's betterment. The straighter the leg, the better the healing. Once they were done with the cast, he settled back down fairly quickly. As I admired the camo cast, I felt satisfied that his leg was in a better position than it was before and he could sport a camo cast. Paul was quite pleased with my pick :)
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| I can't believe how huge those things were on his little head!!! |
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| Yeah - his camo cast :) :) |
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| Out like a light... |
Jacob slept beautifully the whole way home and for several hours once we got home. I guess the medication worked to its full potential.
Amazingly, he's handled the transition quite well. Pain medication is still given as needed, but not often.
Tomorrow, the Paul and I, with the 3 kids plan to go away for a couple days. Marije has offered her services to stay with Jacob for the two days. This comes with mixed emotions to say the least. This is a huge undertaking for her!! She is such a blessing, to say the very least!! She knows my mom is on standby if she needs help. To leave Jacob after all we've been through in the last couple weeks, a break will be beneficial for all!! As Marije was leaving tonight, after giving her some instructions, and voicing our concerns, she concludes that we have to leave this in God's hands too. That is exactly what I needed to hear. I think I'll be going with a bit more ease, keeping that in focus.
Monday 4 November 2013
Change of Lifestyle
Since Jacob's fractured thigh, things have been much more different around the home-front.
1. More irritability. This is hard to know if it's pain from the fracture or just that Jacob's annoyed with a foreign object on his leg. With MUCH thankfulness, he's off the morphine though! His screaming cry has left him again :)
2. More help. Finally on the weekend I mastered how to change a dirty diaper by myself. At the beginning, it took 3 of us. It's still tricky - just trying to keep his leg supported at all times. One small wrong move and we have much bigger problems. With more time needed for every aspect of his care, extra help is beneficial.
3. More appointments. We could be seeing the ortho clinic quite a few times before this whole process is over. Thankfully our case manager and social worker went up to bat for us and Jacob is getting classified as an oncology patient (kept more isolation, rather than waiting in a waiting room.) One of my biggest fears was that we would wait a long time in a waiting room with people coughing and sneezing, sending germs our way. That's the last thing we need for Jacob. Our first appointment is on Wednesday morning, so our thoughts and hopes are that Jacob will be sporting a much lighter, fibre-glass cast. I haven't decided what colour yet, unless they have camo, then the decision is quite easy. Wouldn't Paul like that one :)
4. Jacob will have less cuddle time with his siblings. Caleb and Sheryl have yet to hold him. They lace him with many kisses throughout the day, but they are too apprehensive to hold him for fear of hurting him more.
5. Compromised chest care. Chest care has provided exceptional lung health for this little boy in the last 3/4 of a year. Considering he can't be put into his favorite position, things get a little tricky. It's all about adaptability (something that I can really battle with.)
6. No baths for a while :( He loved his baths, but he's going to have to settle for sponge baths. Hopefully he doesn't lose the sense of water and when his cast comes off, water will be a positive experience for him again.
7. Increased Physiotherapy and Occupational therapy appointments. This is not a bad thing. They come right to the house. To have Mary Ellen and Kathy here is always a treat. Their caring suggestions and thoughtful advice is greatly appreciated.
8. Less playtime. Considering how difficult it can be to move and situate him perfectly, we actually move him as little as possible. Much more of his time is spent in the crib :( If he's happy, we don't move him! We learned that quickly enough.
9. More suctioning. We can no longer turn Jacob onto his side quickly, so we must oral suction him instead. Our philosophy is: better out than in. He doesn't seem to have the coordination to get rid of the phlegm when he's laying on his back, so we assist him in this regards.
10. Keeping us more dependent on the Lord. Never have we felt it more than we need God to give wisdom to the nurses (and ourselves) how to manage this new challenge.
We sweetly feel that God has taken us out of a very dark place last week and has brought us to brighter days. To hand it over to the Lord can be so against my nature, but it's an exceptional blessing when it's accomplished. May His will be done. May we be given the submission to deal with this trial every day! He knows exactly what we need, when we need it.
Pictures of the cast are coming...when the computer is willing to cooperate!
1. More irritability. This is hard to know if it's pain from the fracture or just that Jacob's annoyed with a foreign object on his leg. With MUCH thankfulness, he's off the morphine though! His screaming cry has left him again :)
2. More help. Finally on the weekend I mastered how to change a dirty diaper by myself. At the beginning, it took 3 of us. It's still tricky - just trying to keep his leg supported at all times. One small wrong move and we have much bigger problems. With more time needed for every aspect of his care, extra help is beneficial.
3. More appointments. We could be seeing the ortho clinic quite a few times before this whole process is over. Thankfully our case manager and social worker went up to bat for us and Jacob is getting classified as an oncology patient (kept more isolation, rather than waiting in a waiting room.) One of my biggest fears was that we would wait a long time in a waiting room with people coughing and sneezing, sending germs our way. That's the last thing we need for Jacob. Our first appointment is on Wednesday morning, so our thoughts and hopes are that Jacob will be sporting a much lighter, fibre-glass cast. I haven't decided what colour yet, unless they have camo, then the decision is quite easy. Wouldn't Paul like that one :)
4. Jacob will have less cuddle time with his siblings. Caleb and Sheryl have yet to hold him. They lace him with many kisses throughout the day, but they are too apprehensive to hold him for fear of hurting him more.
5. Compromised chest care. Chest care has provided exceptional lung health for this little boy in the last 3/4 of a year. Considering he can't be put into his favorite position, things get a little tricky. It's all about adaptability (something that I can really battle with.)
6. No baths for a while :( He loved his baths, but he's going to have to settle for sponge baths. Hopefully he doesn't lose the sense of water and when his cast comes off, water will be a positive experience for him again.
7. Increased Physiotherapy and Occupational therapy appointments. This is not a bad thing. They come right to the house. To have Mary Ellen and Kathy here is always a treat. Their caring suggestions and thoughtful advice is greatly appreciated.
8. Less playtime. Considering how difficult it can be to move and situate him perfectly, we actually move him as little as possible. Much more of his time is spent in the crib :( If he's happy, we don't move him! We learned that quickly enough.
9. More suctioning. We can no longer turn Jacob onto his side quickly, so we must oral suction him instead. Our philosophy is: better out than in. He doesn't seem to have the coordination to get rid of the phlegm when he's laying on his back, so we assist him in this regards.
10. Keeping us more dependent on the Lord. Never have we felt it more than we need God to give wisdom to the nurses (and ourselves) how to manage this new challenge.
We sweetly feel that God has taken us out of a very dark place last week and has brought us to brighter days. To hand it over to the Lord can be so against my nature, but it's an exceptional blessing when it's accomplished. May His will be done. May we be given the submission to deal with this trial every day! He knows exactly what we need, when we need it.
Pictures of the cast are coming...when the computer is willing to cooperate!
Thursday 31 October 2013
Kids' Thoughts
The girls yesterday decided to sit down and write some poems. It's amazing how the poems reflect what's going on in their hearts. They're hurting now, as they witness Jacob's suffering taking on a different level.
Many issues in his life,
Yes, crying he does every day.
Being mean to Jacob is very mean.
Remember to ask God for help.
Often he didn't grow for a week.
Tears does he have.
He is so special to me.
Even a child is know by his doings. Proverbs 20:10
Running he sadly will never do.
Sheryl
Boy, o boy, a broken thigh.
Really, really did he cry.
Off to the hospital he went,
Keeping his leg still while it was bent.
Emerge was a home for an evening,
Never did we dream of the being.
The day after daddy's birthday,
He was not happy that day.
I wasn't happy when I heard...
'Going to the hospital' was my sad word.
Home he was to be cured.
Breanne
Many issues in his life,
Yes, crying he does every day.
Being mean to Jacob is very mean.
Remember to ask God for help.
Often he didn't grow for a week.
Tears does he have.
He is so special to me.
Even a child is know by his doings. Proverbs 20:10
Running he sadly will never do.
Sheryl
Boy, o boy, a broken thigh.
Really, really did he cry.
Off to the hospital he went,
Keeping his leg still while it was bent.
Emerge was a home for an evening,
Never did we dream of the being.
The day after daddy's birthday,
He was not happy that day.
I wasn't happy when I heard...
'Going to the hospital' was my sad word.
Home he was to be cured.
Breanne
Monday 28 October 2013
An Unexpected Finding
Jacob's irritability has been high since last Thursday. His stay at
the respite home (Thursday to Saturday) was an adventure for the nurses, as his
irritability was abnormally high. I picked him up on Saturday, noticing that
every time we moved him he would cry. By Sunday morning I was really
contemplating taking him back to emerge. I was going to change his diaper late morning
when I realized his leg was extremely
swollen and hot. An emerge trip was a definite, with an answer to his irritability.
After the x rays were taken, it was confirmed that his femur (thigh bone) was broken. Poor guy!! I can't imagine having a broken bone for several days and it not being in a cast. That's one of the hardest things for me to deal with in this whole event. This boy struggles every day, every night, to some degree or another, and then this. It breaks my heart!!
After weighing different options, it was concluded that they would plaster cast the leg, but not set it, as setting the bone takes sedation. What that means for him down the road, I'm not sure. The doctors were not comfortable sedating him, taking into consideration his neurological condition. They aligned it as much as Jacob would allow (which was A LOT more than I would have allowed!!) I can't believe how tough that little boy can be! What a trooper!!
He was admitted to the paediatric floor where he was kept for observation for the night, I was so disappointed that our previous night nurse, Kim, wasn't working at the hospital. He seemed to be OK over night, so next week Monday we go for a follow up appointment and to get the plaster cast removed and a fibreglass cast put on. That should be way lighter, and much easier to handle. This cast is huge!! The next week is going to have its own challenges considering how easily it can be to break/misplace his hip with all the weight on his leg. I don't want to think about those possibilities. All the 'what if's' have to be put aside, but its brutally hard right now.
Through all the darkness, we are thankful that he didn't need surgery. I was just imagining the doctor putting in a screw and shattering his fragile bone. As much as a broken leg isn't what I was looking for, in many ways it's easier to deal with than a pneumonia! God provides us what He seems fit. At times, the clarity to that truth becomes quite hazy!
After the x rays were taken, it was confirmed that his femur (thigh bone) was broken. Poor guy!! I can't imagine having a broken bone for several days and it not being in a cast. That's one of the hardest things for me to deal with in this whole event. This boy struggles every day, every night, to some degree or another, and then this. It breaks my heart!!
After weighing different options, it was concluded that they would plaster cast the leg, but not set it, as setting the bone takes sedation. What that means for him down the road, I'm not sure. The doctors were not comfortable sedating him, taking into consideration his neurological condition. They aligned it as much as Jacob would allow (which was A LOT more than I would have allowed!!) I can't believe how tough that little boy can be! What a trooper!!
He was admitted to the paediatric floor where he was kept for observation for the night, I was so disappointed that our previous night nurse, Kim, wasn't working at the hospital. He seemed to be OK over night, so next week Monday we go for a follow up appointment and to get the plaster cast removed and a fibreglass cast put on. That should be way lighter, and much easier to handle. This cast is huge!! The next week is going to have its own challenges considering how easily it can be to break/misplace his hip with all the weight on his leg. I don't want to think about those possibilities. All the 'what if's' have to be put aside, but its brutally hard right now.
Through all the darkness, we are thankful that he didn't need surgery. I was just imagining the doctor putting in a screw and shattering his fragile bone. As much as a broken leg isn't what I was looking for, in many ways it's easier to deal with than a pneumonia! God provides us what He seems fit. At times, the clarity to that truth becomes quite hazy!
Thursday 24 October 2013
Different than Expected
Well, this morning our whole house hold was up very early due to Jacob SCREAMING. Not just crying, but screaming. The nurse was doing everything she could think of, but still no success. I took Jacob from her but wow, he didn't appreciate that either. After administering Tylenol he was finally quieting down, just to get fired right up again. After some time we gave him his sleeping med, to see if he was just tired and couldn't settle himself. It settled him somewhat, but he was not near as relaxed as usual. We waited until 8:30, and as soon as he was lifted out of his crib, he was crying hard again. It was confirmed at that point we had an emerge trip put into our day that we were not expecting. Jacob was scheduled for an admission at Kids Country Club, but there was no way I could bring him there in that condition.
Our night nurse was extremely concerned, so she stayed with Jacob and myself up until the moment I left for the hospital, at 8:40. To understand the picture maybe better...the nurses usually leave at 7:00am and are ready for some well earned sleep. This morning she was in no hurry to leave. She decided that she wanted to go with us to emerge, as she was also curious to find out what was up. At least I had some company - and fun company too :)
We were helped immediately :) Chest and stomach x-rays were taken. Urinary tract infection test was done, and blood work taken (after 2 tries.) All showed nothing wrong. Hmmm. Jacob's life can be a guessing game, which today was no exception! They thought maybe the screaming was because of teething, a charlie horse, pulled muscle, brain misfiring, or just a bad day. It's so hard to know anything concretely with kids that are extremely complex!
We'll see how he does at Kids Country Club, as I did take him there after the hospital. As long as he was being held he was ok. I'm hoping he doesn't give them too much trouble!
The nurse left us at that point. What an amazing nurse. Talk about going above and beyond her call of duty!! She deserves more than a 'Hero's in the Home' award!! Thanks Ashley!!
We see God's upholding hand in this way too. To give us a nurse that is so compassionate and helpful is totally given from God's abounding mercy.
Our night nurse was extremely concerned, so she stayed with Jacob and myself up until the moment I left for the hospital, at 8:40. To understand the picture maybe better...the nurses usually leave at 7:00am and are ready for some well earned sleep. This morning she was in no hurry to leave. She decided that she wanted to go with us to emerge, as she was also curious to find out what was up. At least I had some company - and fun company too :)
We were helped immediately :) Chest and stomach x-rays were taken. Urinary tract infection test was done, and blood work taken (after 2 tries.) All showed nothing wrong. Hmmm. Jacob's life can be a guessing game, which today was no exception! They thought maybe the screaming was because of teething, a charlie horse, pulled muscle, brain misfiring, or just a bad day. It's so hard to know anything concretely with kids that are extremely complex!
We'll see how he does at Kids Country Club, as I did take him there after the hospital. As long as he was being held he was ok. I'm hoping he doesn't give them too much trouble!
The nurse left us at that point. What an amazing nurse. Talk about going above and beyond her call of duty!! She deserves more than a 'Hero's in the Home' award!! Thanks Ashley!!
We see God's upholding hand in this way too. To give us a nurse that is so compassionate and helpful is totally given from God's abounding mercy.
Saturday 5 October 2013
Thank you!
We had a community meeting on Friday to discuss the latest observations regarding Jacob. The meeting involved most of the people who are involved from the community. It was a relaxed meeting, but one of the most encouraging meetings we've had to date! We have a GREAT group walking this path beside us!
Becky, our case manager lead the meeting. She is one who's understanding and compassion goes above and beyond the average person out there (even in the medical world!) Her listening ear is always ready to listen to our joys, sorrows, pains, concerns and amazement's. Her one observation that really stuck yesterday was that Jacob is teaching all of us! When we all thought he was heading in a certain direction, the path changed and now he is on a different path (and a much better one!!)
Next, they asked me to share my findings in the last few months. It was short, but I was thrilled to say only positive things!!! He's still gaining weight (he hit the 11kg this week). We've been seeing plenty of smiles and giggles this week, let alone periodic coos in response. Also, Marije and I just completed an infant (well, and maybe not such an infant) massage course which he responded extremely well with. It was super fun.
Our weekly nurse gave a report saying how difficult it is to diagnose Jacob, because of the abnormalities of the brain stem. A fever could mean nothing, but if he should have a fever, he may not have one. This aspect makes it hard to figure him out. Basically she summed it up that we must take Jacob each and every day as he is and deal with what he gives us. We've been told that we have one of Oxford County's best visiting nurses. Providence!! She's been with us the longest of anyone in the community, and has sure walked this road, compassionately right beside us.
O.T. and P.T. summed up their time with Jacob as one that is continually changing. Jacob needs frequent position changes and chest physio to keep his lungs in tip top shape. Incorporating different play options is vital to keep his body in moving, workable condition. They are such a fun pair! I feel spoiled to have them working with us!
Our nurse manager gave the report of the struggles with night nursing - nurses leaving for different jobs, nights not being able to get filled, communication issues and several other issues. We're hoping that in the future this part of our life gets easier!!
The social worker talked about the success we just had regarding funding for the hi-low base and extra respite. She was still excited for us. She does all the paperwork for most of the government and funding applications, as I would need a PHD to understand them :( She sure makes our life much easier. Hats off to Tammy!
Community Living Tillsonburg was also represented and talked about the snoezelen room and have Jacob's siblings come with Jacob one time, to see exactly what happens in a snoezelen room. What a great idea!!
The team together is strong, energetic, caring, understanding, supportive and extremely capable. I love the unity that is felt when they are all together - they are a strong driving force all working for Jacob's comfort. We feel truly blessed to have each and every one of them involved in our case! Thank you from the bottom of our hearts!!
Becky, our case manager lead the meeting. She is one who's understanding and compassion goes above and beyond the average person out there (even in the medical world!) Her listening ear is always ready to listen to our joys, sorrows, pains, concerns and amazement's. Her one observation that really stuck yesterday was that Jacob is teaching all of us! When we all thought he was heading in a certain direction, the path changed and now he is on a different path (and a much better one!!)
Next, they asked me to share my findings in the last few months. It was short, but I was thrilled to say only positive things!!! He's still gaining weight (he hit the 11kg this week). We've been seeing plenty of smiles and giggles this week, let alone periodic coos in response. Also, Marije and I just completed an infant (well, and maybe not such an infant) massage course which he responded extremely well with. It was super fun.
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| One of the MANY smiles we saw yesterday! |
Our weekly nurse gave a report saying how difficult it is to diagnose Jacob, because of the abnormalities of the brain stem. A fever could mean nothing, but if he should have a fever, he may not have one. This aspect makes it hard to figure him out. Basically she summed it up that we must take Jacob each and every day as he is and deal with what he gives us. We've been told that we have one of Oxford County's best visiting nurses. Providence!! She's been with us the longest of anyone in the community, and has sure walked this road, compassionately right beside us.
O.T. and P.T. summed up their time with Jacob as one that is continually changing. Jacob needs frequent position changes and chest physio to keep his lungs in tip top shape. Incorporating different play options is vital to keep his body in moving, workable condition. They are such a fun pair! I feel spoiled to have them working with us!
Our nurse manager gave the report of the struggles with night nursing - nurses leaving for different jobs, nights not being able to get filled, communication issues and several other issues. We're hoping that in the future this part of our life gets easier!!
The social worker talked about the success we just had regarding funding for the hi-low base and extra respite. She was still excited for us. She does all the paperwork for most of the government and funding applications, as I would need a PHD to understand them :( She sure makes our life much easier. Hats off to Tammy!
Community Living Tillsonburg was also represented and talked about the snoezelen room and have Jacob's siblings come with Jacob one time, to see exactly what happens in a snoezelen room. What a great idea!!
The team together is strong, energetic, caring, understanding, supportive and extremely capable. I love the unity that is felt when they are all together - they are a strong driving force all working for Jacob's comfort. We feel truly blessed to have each and every one of them involved in our case! Thank you from the bottom of our hearts!!
Monday 30 September 2013
President's Choice Charity
Well what a day September 30 is. Jacob has reached the 2 1/2 year
milestone (that's double the high-end average life expectancy). What a blessing from above which we totally never anticipated seeing! Plus, we
had the privilege to celebrate at the Tillsonburg
Zehrs
due to Jacob being approved for some funding :) The managers at Zehrs
wanted to meet Jacob, Paul and I to actually meet us and hear the story of
how the donation will change our lives. It was an honour to promote the
charity in this way!! The cashiers were excited to be able to see firsthand
where the money goes. The cake was scrumptious too!
The President's Choice Children's Charity has funded extra respite hours for 6 months and
an interior base for Jacob's stroller. It will make life much easier to
have him sitting in the house - instead of so much laying in his crib :)
The respite will be wonderful to have! Hopefully it will take away some stress by having more time to do the motherly/wifely duties.
I must add an important tidbit of information regarding the PC Children's Charity. Every dollar that is donated by Loblaw’s Customer's goes directly to the kids and their family :) Loblaw’s themselves look after any administration costs. This past 2 week campaign, nationwide, they raised 2.4 million dollars! That's huge, considering a donation is $2.00 at the till.
Thank you to all of you who donated to this worthwhile cause! We appreciate your donation, along with the many other families who are blessed by receiving financial help in their trying situations.
The respite will be wonderful to have! Hopefully it will take away some stress by having more time to do the motherly/wifely duties.
I must add an important tidbit of information regarding the PC Children's Charity. Every dollar that is donated by Loblaw’s Customer's goes directly to the kids and their family :) Loblaw’s themselves look after any administration costs. This past 2 week campaign, nationwide, they raised 2.4 million dollars! That's huge, considering a donation is $2.00 at the till.
Thank you to all of you who donated to this worthwhile cause! We appreciate your donation, along with the many other families who are blessed by receiving financial help in their trying situations.
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| Paul with the assistant store manager. |
Thursday 26 September 2013
Cold Season has Arrived
Unfortunately Sheryl and Caleb came home with colds last week. That's never encouraging considering the cost of a 'common cold' for Jacob. Well, he got it. It showed its ugly head on Saturday. Saturday and Sunday we were in limbo not knowing what way he was going to go - get a full blown cold, or overcome the obstacle quickly. All seemed to be going decent until Monday afternoon. A high fever set in, he had low oxygen saturation and a high heart rate. That's a horrible combo!!
After a call out to the nurse, she came and assessed his lungs and confirmed there were 'crackles' in his lungs :( We called the nurse practitioner who advised us to keep a close eye on him over night and see what happens (stressing us to call her if anything changes, no matter the time.) Talk about dedication. If it was a virus, there's nothing the hospital will do that we can't do at home. Tuesday his lungs were somewhat better and yesterday his lungs were CLEAR. Amazing! I was in shear unbelief, yet so thankful. Today he was battling a bit more again, but we're hopeful that he'll overcome this hurdle.
It adds to the care tremendously to have him off his norm!! Considering how he struggles to breathe at times, it's simply outstanding that he still will smile! Yes, yesterday he gave some smiles again. I love that boy!
After a call out to the nurse, she came and assessed his lungs and confirmed there were 'crackles' in his lungs :( We called the nurse practitioner who advised us to keep a close eye on him over night and see what happens (stressing us to call her if anything changes, no matter the time.) Talk about dedication. If it was a virus, there's nothing the hospital will do that we can't do at home. Tuesday his lungs were somewhat better and yesterday his lungs were CLEAR. Amazing! I was in shear unbelief, yet so thankful. Today he was battling a bit more again, but we're hopeful that he'll overcome this hurdle.
It adds to the care tremendously to have him off his norm!! Considering how he struggles to breathe at times, it's simply outstanding that he still will smile! Yes, yesterday he gave some smiles again. I love that boy!
Monday 16 September 2013
Lately
Our life with Jacob has somewhat shifted in the last month or so. He
requires constant supervision with me being at arm’s length, pretty much
every minute of the day. His abnormalities increase, and so does his care (and right along
with that our love increases by leaps and bounds too.)
After meeting with our paediatrician last week, he suspects the 'seizure like activity' we’ve been seeing are not seizures, but brain stem misfiring. Neurology is getting involved again, so we'll see where that directs us. Jacob may have to go for some testing. I'm thankful that the educated guess the doctor has given is that Jacob's not having seizures, yet I'm concerned as his brain stem continues to show more signs of abnormalities. The outlook is grim.
Yet, amidst all the doom and gloom, Jacob continues to surprise us. Surprise us with a smile here and there and a rare giggle. It's so uplifting. We can go months with no response, so when we get them its heart warming. Even last night he thought something was fun, so he giggled. Just one super short one, but it still classifies as a giggle :)
Several weeks ago we had our Pastor and his wife visit. What an evening of encouragement and direction!! Weeks later we can still swim in the ocean of thankfulness! He told us something which has made us view our situation through a different set of eyes. He said people call Jacob handicapped (which we could all agree, he's handicapped), yet, your other children are far more handicapped than Jacob. Jacob doesn't have the capabilities to develop a sinful thought or a sinful desire or to carry out a sinful act. Your other children have many sinful thoughts, desires and sinful actions each and every day. Jacob resembles God's image in an amazing way. What a thought. What an encouragement for our little Jacob! Jacob was made in God's image!! So precious. What a pleading ground.
We've worked on transforming Jacob's room into a snoezelen room once again. He loves the quiet, darkened room and soothing music, so it only seemed right to put it together again. After talking with different therapists, we have a room where Jacob can relax his little body.
After meeting with our paediatrician last week, he suspects the 'seizure like activity' we’ve been seeing are not seizures, but brain stem misfiring. Neurology is getting involved again, so we'll see where that directs us. Jacob may have to go for some testing. I'm thankful that the educated guess the doctor has given is that Jacob's not having seizures, yet I'm concerned as his brain stem continues to show more signs of abnormalities. The outlook is grim.
Yet, amidst all the doom and gloom, Jacob continues to surprise us. Surprise us with a smile here and there and a rare giggle. It's so uplifting. We can go months with no response, so when we get them its heart warming. Even last night he thought something was fun, so he giggled. Just one super short one, but it still classifies as a giggle :)
Several weeks ago we had our Pastor and his wife visit. What an evening of encouragement and direction!! Weeks later we can still swim in the ocean of thankfulness! He told us something which has made us view our situation through a different set of eyes. He said people call Jacob handicapped (which we could all agree, he's handicapped), yet, your other children are far more handicapped than Jacob. Jacob doesn't have the capabilities to develop a sinful thought or a sinful desire or to carry out a sinful act. Your other children have many sinful thoughts, desires and sinful actions each and every day. Jacob resembles God's image in an amazing way. What a thought. What an encouragement for our little Jacob! Jacob was made in God's image!! So precious. What a pleading ground.
We've worked on transforming Jacob's room into a snoezelen room once again. He loves the quiet, darkened room and soothing music, so it only seemed right to put it together again. After talking with different therapists, we have a room where Jacob can relax his little body.
 |
| Enjoying his own ball pit. An amazing fact about the ball pit is that he can sit supporting his head. Usually his neck has little/no control, yet in the balls he keeps his head up for some time. |
 |
| In the darkened room. He seems to enjoy the lights and music together. |
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| When the girls are home, Jacob can end up anywhere. If he's fussy, they usually know what soothes him, so they lend a helping hand. I sure miss that now that they are gone to school!!! |
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| Another one of the girls ideas. If one thing doesn't work, they go on to another. It doesn't take long for our living room to look like a storm just ripped through :) |
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| Jacob in his favorite chair! He's also trying out his new feet splints for the first time. |
Friday 6 September 2013
We're Back
It's sure been a while since I've actually took the time to write. There's not a day that goes by that I'm not 'writing' in my head.
Jacob has continued on in different ways. Ways that confuse us, ways that uplift our spirits, ways that concern us, ways that uphold us, and many ways that are continually teaching us. His journey is teaching us patience and trust!! It's hard when I'm the type of person who wants to know why and how. Jacob's life basically doesn't include why and how.
Yesterday marked our seven month milestone since Jacob's last pneumonia (and 10 months since our last hospital admission!!) . That's amazing beyond words. Seven months ago we were mentally preparing (as much as that's possible) for a funeral and now seven months later with few significant changes. Some of these changes have been happening at a quicker rate it seems lately, but nothing that is causing the doctors to get really concerned. Most of the changes can be hard to diagnose 'why'. I have to be content with little or no answers. The doctors at times don't know and dislike having to tell us, 'I don't know.' Time will only tell!
We're seeing much more stiffness with an increase in jittery, jarring behaviour. It seems to be getting worse in the last month or so. It looks like he gets scared really easy. Even just a slight position change can send him over the edge. What's going on in the brain would be so nice to know (or maybe not.)
Last week we were able to have a high moment and I mean a really high moment (or should I say - moments.) We had one of our night nurses, Andrea, here for a day shift. Breanne and Andrea were talking to Jacob when suddenly he did it - he giggled and giggled. I came storming to the scene to hear those priceless giggles and to actually witness him smiling in response. Simply breathtaking. We were able to capture some of his giggles on video and his most beautiful smile on camera. It's been half a year since we've seen a smile or heard his giggle. He can have a really content look on his face often, but never has it been a full smile. I totally understood how a giggle or smile could get us through the day. I sure had a bounce in my step the rest of the day.
Yesterday he was using his vocal cords a lot, but in a different way - crying. When I picked him up at respite yesterday he was hoarse sounding, but the doctor was quite sure it was from a strong crying spell he had earlier on in the morning. Well, he's still hoarse when he cries, and it's not going to heal the way that he's been crying today. What a change. Hopefully he's not coming down with something!
Jacob has continued on in different ways. Ways that confuse us, ways that uplift our spirits, ways that concern us, ways that uphold us, and many ways that are continually teaching us. His journey is teaching us patience and trust!! It's hard when I'm the type of person who wants to know why and how. Jacob's life basically doesn't include why and how.
Yesterday marked our seven month milestone since Jacob's last pneumonia (and 10 months since our last hospital admission!!) . That's amazing beyond words. Seven months ago we were mentally preparing (as much as that's possible) for a funeral and now seven months later with few significant changes. Some of these changes have been happening at a quicker rate it seems lately, but nothing that is causing the doctors to get really concerned. Most of the changes can be hard to diagnose 'why'. I have to be content with little or no answers. The doctors at times don't know and dislike having to tell us, 'I don't know.' Time will only tell!
We're seeing much more stiffness with an increase in jittery, jarring behaviour. It seems to be getting worse in the last month or so. It looks like he gets scared really easy. Even just a slight position change can send him over the edge. What's going on in the brain would be so nice to know (or maybe not.)
Last week we were able to have a high moment and I mean a really high moment (or should I say - moments.) We had one of our night nurses, Andrea, here for a day shift. Breanne and Andrea were talking to Jacob when suddenly he did it - he giggled and giggled. I came storming to the scene to hear those priceless giggles and to actually witness him smiling in response. Simply breathtaking. We were able to capture some of his giggles on video and his most beautiful smile on camera. It's been half a year since we've seen a smile or heard his giggle. He can have a really content look on his face often, but never has it been a full smile. I totally understood how a giggle or smile could get us through the day. I sure had a bounce in my step the rest of the day.
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| Andrea holding Jacob and thoroughly enjoying his giggles. |
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