Mar
31
    
Posted (Tina) in All Posts on March-31-2009


Our post is going to be short and sweet because Grandma Eusey is here to visit.

Ella had a good day. She enjoyed her physical therapy, as usual. She is getting so much stronger, as far as putting weight on her arms when she is on her belly…so good to see.

Life is a Journey

Life is but a stopping place,
a pause in what’s to be,
A resting place along the road,
to sweet eternity.

We all have different journeys,
different paths along the way,
We all were meant to learn some things,
but never meant to stay…

Our destination is a place,
far greater than we know.
For some the journey’s quicker,
for some the journey’s slow.

And when the journey finally ends,
we’ll claim a great reward,
And find an everlasting peace,
together with the Lord.

~Anonymous



 
Mar
31
    
Posted (Tina) in All Posts on March-31-2009


Our post is going to be short and sweet because Grandma Eusey is here to visit.

Ella had a good day. She enjoyed her physical therapy, as usual. She is getting so much stronger, as far as putting weight on her arms when she is on her belly…so good to see.

Life is a Journey

Life is but a stopping place,
a pause in what’s to be,
A resting place along the road,
to sweet eternity.

We all have different journeys,
different paths along the way,
We all were meant to learn some things,
but never meant to stay…

Our destination is a place,
far greater than we know.
For some the journey’s quicker,
for some the journey’s slow.

And when the journey finally ends,
we’ll claim a great reward,
And find an everlasting peace,
together with the Lord.

~Anonymous



 
Mar
30
    
Posted (Tina) in All Posts on March-30-2009


Ella slept well last night – she only woke up twice. Although she was wired until 11pm. She is turning into a night owl!

The cat woke me up around 4:30am and I could not fall back to sleep. It was annoying. So 2.5 hours later, I was finally tired enough to dose off.

Ella and I ventured out this afternoon to visit Dr. Perry. It was great to catch up with him and fill him in on all the details since the SVC procedure. He thought she looked fantastic and was impressed with her recent weight gain. This morning, she weighed in at 10.17 kilos. He showed me her growth chart…drumroll, please…and for the first time ever, Ella made it into the “normal” growth curve. Although it is near the bottom (the 25th percentile), it is the first time that she has ever been in the curve. Very good progress for the Bun.

If Ella remains stable, Dr. Perry feels comfortable waiting until the end of July to see her again…near her 2 year birthday. That is HUGE. We normally visit approximately every 6 weeks. And if you remember, her pulmonologist wants to see her in early June. Another long stretch for Ella. Most of it will depend on her appointment on April 16th with the cardiologist for her chest xray and echocardiogram to check on her SVC. We’re praying she checks out well, that she can stay healthy and keep on a steady track of weight gain with no fluid retention.

We’re excited to have Grandma Eusey come and visit us this week. She shows up tomorrow and is dying to love on the Bun! It should be a good time.



 
Mar
30
    
Posted (Tina) in All Posts on March-30-2009


Ella slept well last night – she only woke up twice. Although she was wired until 11pm. She is turning into a night owl!

The cat woke me up around 4:30am and I could not fall back to sleep. It was annoying. So 2.5 hours later, I was finally tired enough to dose off.

Ella and I ventured out this afternoon to visit Dr. Perry. It was great to catch up with him and fill him in on all the details since the SVC procedure. He thought she looked fantastic and was impressed with her recent weight gain. This morning, she weighed in at 10.17 kilos. He showed me her growth chart…drumroll, please…and for the first time ever, Ella made it into the “normal” growth curve. Although it is near the bottom (the 25th percentile), it is the first time that she has ever been in the curve. Very good progress for the Bun.

If Ella remains stable, Dr. Perry feels comfortable waiting until the end of July to see her again…near her 2 year birthday. That is HUGE. We normally visit approximately every 6 weeks. And if you remember, her pulmonologist wants to see her in early June. Another long stretch for Ella. Most of it will depend on her appointment on April 16th with the cardiologist for her chest xray and echocardiogram to check on her SVC. We’re praying she checks out well, that she can stay healthy and keep on a steady track of weight gain with no fluid retention.

We’re excited to have Grandma Eusey come and visit us this week. She shows up tomorrow and is dying to love on the Bun! It should be a good time.



 
Mar
29
    
Posted (Tina) in All Posts on March-29-2009


Yesterday (Saturday) was great with Ella. She was happy and feeling good. We were having the itch to go out…out with the Bun. We’re not really supposed to since it can expose Ella and even the slightest cold or virus can make her very sick. But, we have been sequestered so much over the past 20 months, we just decided that we wanted to take the risk. So, we went to our favorite breakfast place. Thankfully, there were hardly any children and no one in the vicinity sounded sick. That was a relief.

Ella had a great time just sitting on my lap and people watching. Here and there, she would kick her legs and smile. But for the most part, she was content with her frog and binky just snuggling with Mom. I ate with one hand and enjoyed the pancakes with fresh strawberries and whipped cream. Yum! It just felt good to go out as a family. Before the meal ended, our server came to our table to inform us that an anonymous person had paid for our meal. We were stunned. Apparently, this man told the server that he feels blessed and likes to pay for someone else’s meal each time he goes out to a restaurant. So he asked her to point out her tables. And there you have it…it was such a nice surprise and definitely not expected.

Then as we were about to get up from our table and leave, three ladies came up and asked about Ella. They wanted to know more about her condition, why she was on oxygen and more importantly, they wanted to pray for us and for healing on Ella’s body. Wow. So here we were in the middle of our favorite breakfast place, being blessed by three other believers that felt prompted to pray for our family.

It’s been a rough time lately…emotionally. Sometimes walking through the valley can get the best of you and even though you know the truth about God always being in control and always being with you, it’s easy not to “feel” it. We were discussing that just before breakfast and then both of these events happened. We just felt it was God’s way of letting us know in a tangible way that He is still there. He knows our struggles with Ella and He has a plan.

Finally, we had our date night. We have not been part of a church since we moved back home. Mostly because we cannot take Ella to church with us. But I felt prompted to look for churches that offer Saturday night services. We found one online and just decided to try it. The message was poignant and hit both if us, but especially me. Yes, I was crying throughout the service. Again, we know the truth but it is refreshing to hear it. It was like drinking water from a spring after walking in the desert for months. We’re not sure if we are called to continue attending this particular church, but really enjoyed the service and I could see us attending again. Just an amazing day of feeling God’s hand in our life and Him making it abundantly clear that He has not gone anywhere and He is going to see us through even the toughest of times.

Unfortunately, Ella did not sleep well last night. Josh tried to give me a night of rest, but it was so much, that we ended up both taking turns. Ella woke up several times and then was just awake, wide awake from 2:30am – 5am. What? We tried everything to get her to be tired, but she was wired. It was weird.

Along with a rough night, we have noticed that Ella’s numbers are intermittent. It does seem like her oxygen requirements have creeped up slightly during the day and at night over the past 5 weeks. Not a tremendous amount, but the difference is there. Also, we did decrease the Captopril and then discontinue the medicine about 5 days ago. We’re not sure what impact that is having on her body. But her heart rate seems to be higher at times too. This is a bit of uncharted territory for us. We’ve seen all these signs before and even seen them worse in Ella, but not quite with this exact presentation. So, we’re trying to stay in tune to what might be going on with her. We’re hoping that she sleeps tonight.

And as we retire for the evening, we’re reminded that we are called to trust Him.

Trust in the Lord
The wind’s not always at our back,
The sky is not always blue.
Sometimes we crave the things we lack,
And don’t know what to do.

Sometimes life’s an uphill ride,
With mountains we must climb.
At times the river’s deep and wide,
And crossing takes some time.

No one said that life is easy,
There are no guarantees.
So Trust in the Lord continually,
On calm or stormy seas.

The challenges we face today,
Prepares us for tomorrow.
For faith takes our fears away,
And peace replaces sorrow.

~Anonymous



 
Mar
29
    
Posted (Tina) in All Posts on March-29-2009


Yesterday (Saturday) was great with Ella. She was happy and feeling good. We were having the itch to go out…out with the Bun. We’re not really supposed to since it can expose Ella and even the slightest cold or virus can make her very sick. But, we have been sequestered so much over the past 20 months, we just decided that we wanted to take the risk. So, we went to our favorite breakfast place. Thankfully, there were hardly any children and no one in the vicinity sounded sick. That was a relief.

Ella had a great time just sitting on my lap and people watching. Here and there, she would kick her legs and smile. But for the most part, she was content with her frog and binky just snuggling with Mom. I ate with one hand and enjoyed the pancakes with fresh strawberries and whipped cream. Yum! It just felt good to go out as a family. Before the meal ended, our server came to our table to inform us that an anonymous person had paid for our meal. We were stunned. Apparently, this man told the server that he feels blessed and likes to pay for someone else’s meal each time he goes out to a restaurant. So he asked her to point out her tables. And there you have it…it was such a nice surprise and definitely not expected.

Then as we were about to get up from our table and leave, three ladies came up and asked about Ella. They wanted to know more about her condition, why she was on oxygen and more importantly, they wanted to pray for us and for healing on Ella’s body. Wow. So here we were in the middle of our favorite breakfast place, being blessed by three other believers that felt prompted to pray for our family.

It’s been a rough time lately…emotionally. Sometimes walking through the valley can get the best of you and even though you know the truth about God always being in control and always being with you, it’s easy not to “feel” it. We were discussing that just before breakfast and then both of these events happened. We just felt it was God’s way of letting us know in a tangible way that He is still there. He knows our struggles with Ella and He has a plan.

Finally, we had our date night. We have not been part of a church since we moved back home. Mostly because we cannot take Ella to church with us. But I felt prompted to look for churches that offer Saturday night services. We found one online and just decided to try it. The message was poignant and hit both if us, but especially me. Yes, I was crying throughout the service. Again, we know the truth but it is refreshing to hear it. It was like drinking water from a spring after walking in the desert for months. We’re not sure if we are called to continue attending this particular church, but really enjoyed the service and I could see us attending again. Just an amazing day of feeling God’s hand in our life and Him making it abundantly clear that He has not gone anywhere and He is going to see us through even the toughest of times.

Unfortunately, Ella did not sleep well last night. Josh tried to give me a night of rest, but it was so much, that we ended up both taking turns. Ella woke up several times and then was just awake, wide awake from 2:30am – 5am. What? We tried everything to get her to be tired, but she was wired. It was weird.

Along with a rough night, we have noticed that Ella’s numbers are intermittent. It does seem like her oxygen requirements have creeped up slightly during the day and at night over the past 5 weeks. Not a tremendous amount, but the difference is there. Also, we did decrease the Captopril and then discontinue the medicine about 5 days ago. We’re not sure what impact that is having on her body. But her heart rate seems to be higher at times too. This is a bit of uncharted territory for us. We’ve seen all these signs before and even seen them worse in Ella, but not quite with this exact presentation. So, we’re trying to stay in tune to what might be going on with her. We’re hoping that she sleeps tonight.

And as we retire for the evening, we’re reminded that we are called to trust Him.

Trust in the Lord
The wind’s not always at our back,
The sky is not always blue.
Sometimes we crave the things we lack,
And don’t know what to do.

Sometimes life’s an uphill ride,
With mountains we must climb.
At times the river’s deep and wide,
And crossing takes some time.

No one said that life is easy,
There are no guarantees.
So Trust in the Lord continually,
On calm or stormy seas.

The challenges we face today,
Prepares us for tomorrow.
For faith takes our fears away,
And peace replaces sorrow.

~Anonymous



 
Mar
28
    
Posted (Josh) in All Posts on March-28-2009

We had a great day with the Bun, and would love to share the details but we’re just too tired tonight. We’ll fill ya’ll in tomorrow.

G’Night all.



 
Mar
28
    
Posted (Josh) in All Posts on March-28-2009

We had a great day with the Bun, and would love to share the details but we’re just too tired tonight. We’ll fill ya’ll in tomorrow.

G’Night all.



 
Mar
27
    
Posted (Tina) in All Posts on March-27-2009


Well, we got around 10″-12″ of snow at our house yesterday. But the sun came out in full force today and started melting it away.

Ella was having her own version of melting away, as usual when it came to feeding.

She slept well again last night, only up a few times. The extra sleep is so appreciated by Mom! Also, she is continuing to have good weight gain. This morning she was at 9.96 kilos. She’s been gaining .2 to .3 kilos each day. The extra weight gain is very good for her little body.


Tonight, it is just me and the Bun. Kelly went out with a friend to dinner and Josh is at a hockey game with Grandpa!

Looking forward to the weekend…



 
Mar
27
    
Posted (Tina) in All Posts on March-27-2009


Well, we got around 10″-12″ of snow at our house yesterday. But the sun came out in full force today and started melting it away.

Ella was having her own version of melting away, as usual when it came to feeding.

She slept well again last night, only up a few times. The extra sleep is so appreciated by Mom! Also, she is continuing to have good weight gain. This morning she was at 9.96 kilos. She’s been gaining .2 to .3 kilos each day. The extra weight gain is very good for her little body.


Tonight, it is just me and the Bun. Kelly went out with a friend to dinner and Josh is at a hockey game with Grandpa!

Looking forward to the weekend…