Ella’s doing ok. Were watching her closely though. Enjoy the slideshow above of her grabbing her tongue =). We’ll update with more details later.

Ella’s doing ok. Were watching her closely though. Enjoy the slideshow above of her grabbing her tongue =). We’ll update with more details later.

Well, the Bun still didn’t look good by this morning according to her numbers. So in-between meetings at work, I paged the pulmonologist. He wants to make sure that it is not something else that is causing the lower saturation, increased heart rate and moodiness. After talking, he agreed to give her one more dose of Bumex. Afterwards, she had a huge diaper and that was it. So, maybe we have dried her out now.

But when we put her to bed tonight, her numbers still didn’t look great. We’ll see once she is really fast asleep. If she gets worse over the coming days, the pulmonologist asked that we call back. He wants to make sure that it is not some other sort of illness that is causing these symptoms.

Yep, Ella was going at it in the exer-saucer again today. She also had physical therapy today as well. The notes from the therapist indicated that she is rolling from her belly to her back on a consistent basis. Ella still needs to gain upper body strength, so the PT asked that we continue to make Ella reach mid-line for toys and grab for things when we are holding her to build her shoulder/torso strength. Also, she requested that Kelly give her several sessions of tummy time throughout the day. Right now, Ella only tolerates 3-4 minutes at a time.

And of course, we are still working on oral foods. Looks like sweet potatoes to me!

We’re just thankful for where Ella is at today…we are not at the hospital. We have a wonderful doctor that we can call and try to manage her care from home. I can’t imagine if we had to take her to the doctor every time she showed symptoms. We would be having doctor visits 2-4 times per month. That would be a drag…and living at the hospital is a drag.

So although she is not doing as good today as other days, we praise Him for where He has her and continue to pray for her increased strength and health.

Well, the Bun still didn’t look good by this morning according to her numbers. So in-between meetings at work, I paged the pulmonologist. He wants to make sure that it is not something else that is causing the lower saturation, increased heart rate and moodiness. After talking, he agreed to give her one more dose of Bumex. Afterwards, she had a huge diaper and that was it. So, maybe we have dried her out now.

But when we put her to bed tonight, her numbers still didn’t look great. We’ll see once she is really fast asleep. If she gets worse over the coming days, the pulmonologist asked that we call back. He wants to make sure that it is not some other sort of illness that is causing these symptoms.

Yep, Ella was going at it in the exer-saucer again today. She also had physical therapy today as well. The notes from the therapist indicated that she is rolling from her belly to her back on a consistent basis. Ella still needs to gain upper body strength, so the PT asked that we continue to make Ella reach mid-line for toys and grab for things when we are holding her to build her shoulder/torso strength. Also, she requested that Kelly give her several sessions of tummy time throughout the day. Right now, Ella only tolerates 3-4 minutes at a time.

And of course, we are still working on oral foods. Looks like sweet potatoes to me!

We’re just thankful for where Ella is at today…we are not at the hospital. We have a wonderful doctor that we can call and try to manage her care from home. I can’t imagine if we had to take her to the doctor every time she showed symptoms. We would be having doctor visits 2-4 times per month. That would be a drag…and living at the hospital is a drag.

So although she is not doing as good today as other days, we praise Him for where He has her and continue to pray for her increased strength and health.

Ella had a tough time going to sleep last night. It was 10:30pm and she was hyper. Kicking her legs and making noise. Wow. It literally took 30 minutes of calming and rocking to convince her that sleep was a good idea.

Once she fell asleep, her numbers were still not as good as we would have liked. Sometimes it is hard to tell when she first goes to sleep, so I asked Josh to look when he woke up early this morning. Unfortunately, still a bit on the sketchy side. We thought we would ask Kelly to watch her clinically today.

Kelly reported that she tolerated the food as the day progressed and went into the later sessions. They tried a bit of apples with some sweet potatoes. Hopefully, her progression will continue to move in the right direction. I know that the Christmas break was not a great time of feeding progression. She has an OT appointment tomorrow, so hopefully the OT can continue to bring more perspective.

Overall, Ella had a pretty good day. Her and Kelly had fun using all the new toys that Santa brought her. Also, Ella was sporting a new outfit from Grandma Eusey with a new headband from Grandma West. Pretty sassy looking in her Elmo attire! And she did not mind spending time in her exer-saucer. The first time was for 45 mins to an hour. The second and third time was for another hour. Lots of time sitting up today! Good job Bun!

When Ella went to sleep tonight, it was the same type of “red flag”. She was on 1 liter of oxygen saturating 93-94 which is okay, but not where she normally would be on 1 liter. Heck, we’ve even been able to wean her to 750ccs when she is asleep and doing better.

That likely means that she probably has more fluid on board. It’s tough to know for sure, but that is what we are leaning towards. This means that we will probably have to call Dr. Abman tomorrow to see if he wants to give her more Bumex.

As we drift off to bed tonight, we’re just so thankful for Ella.

Thank you Lord for blessing us with the Bun.

Ella had a tough time going to sleep last night. It was 10:30pm and she was hyper. Kicking her legs and making noise. Wow. It literally took 30 minutes of calming and rocking to convince her that sleep was a good idea.

Once she fell asleep, her numbers were still not as good as we would have liked. Sometimes it is hard to tell when she first goes to sleep, so I asked Josh to look when he woke up early this morning. Unfortunately, still a bit on the sketchy side. We thought we would ask Kelly to watch her clinically today.

Kelly reported that she tolerated the food as the day progressed and went into the later sessions. They tried a bit of apples with some sweet potatoes. Hopefully, her progression will continue to move in the right direction. I know that the Christmas break was not a great time of feeding progression. She has an OT appointment tomorrow, so hopefully the OT can continue to bring more perspective.

Overall, Ella had a pretty good day. Her and Kelly had fun using all the new toys that Santa brought her. Also, Ella was sporting a new outfit from Grandma Eusey with a new headband from Grandma West. Pretty sassy looking in her Elmo attire! And she did not mind spending time in her exer-saucer. The first time was for 45 mins to an hour. The second and third time was for another hour. Lots of time sitting up today! Good job Bun!

When Ella went to sleep tonight, it was the same type of “red flag”. She was on 1 liter of oxygen saturating 93-94 which is okay, but not where she normally would be on 1 liter. Heck, we’ve even been able to wean her to 750ccs when she is asleep and doing better.

That likely means that she probably has more fluid on board. It’s tough to know for sure, but that is what we are leaning towards. This means that we will probably have to call Dr. Abman tomorrow to see if he wants to give her more Bumex.

As we drift off to bed tonight, we’re just so thankful for Ella.

Thank you Lord for blessing us with the Bun.

Last night, Ella did not sleep well. She coughed a lot during the night and woke up several times. Her “numbers” did not look that great either. It was just a confirmation that she was likely accumulating fluid.

The nurse did not visit our home yesterday due to the holidays, so we did not have weight as a factor in determining if this was going on. But a higher heart rate and requiring more oxygen is pretty straight-forward.

So around 12 noon, we gave Ella a dose of Bumex (it has been 2 weeks and 1 day since her last dose). Within the next few hours, she had 2 large diapers. This just shows that she really did need the diuretic. For the rest of the day, she seemed in a good mood. We tried doing “exercises” with her, but she seemed like she knew that it was Saturday and didn’t seem up for it. It was like she was telling us that she wanted a break. So it became a lazy and relaxed day for the West household.

It was sunny outside and looked nice, but the temperature gave a clear reminder: 23 degrees. I long for the summer days when it is warmer and we can take Ella outside again. Heck, I long to be able to take Ella out in public places and not be so concerned about her health.

But we praise God for where Ella is right now. Looking back over the blog this morning provided a reality check. Ella has endured so much and has made so much progress over the past year. It blows my mind when I think of what a true miracle we have been given. And although the days can be tough, it is so worth it.

Galatians 6:9 (NIV)
Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.

Last night, Ella did not sleep well. She coughed a lot during the night and woke up several times. Her “numbers” did not look that great either. It was just a confirmation that she was likely accumulating fluid.

The nurse did not visit our home yesterday due to the holidays, so we did not have weight as a factor in determining if this was going on. But a higher heart rate and requiring more oxygen is pretty straight-forward.

So around 12 noon, we gave Ella a dose of Bumex (it has been 2 weeks and 1 day since her last dose). Within the next few hours, she had 2 large diapers. This just shows that she really did need the diuretic. For the rest of the day, she seemed in a good mood. We tried doing “exercises” with her, but she seemed like she knew that it was Saturday and didn’t seem up for it. It was like she was telling us that she wanted a break. So it became a lazy and relaxed day for the West household.

It was sunny outside and looked nice, but the temperature gave a clear reminder: 23 degrees. I long for the summer days when it is warmer and we can take Ella outside again. Heck, I long to be able to take Ella out in public places and not be so concerned about her health.

But we praise God for where Ella is right now. Looking back over the blog this morning provided a reality check. Ella has endured so much and has made so much progress over the past year. It blows my mind when I think of what a true miracle we have been given. And although the days can be tough, it is so worth it.

Galatians 6:9 (NIV)
Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.