Ella seemed to be doing a bit better today. Although she was not that excited to wear a Halloween costume. She could tell that she was getting lots of attention by her outfit, but I think it was uncomfortable. Ella loves to grab her feet and kick. The outfit made it tough to do her daily foot kicking exercises.

The home nurse came to listen to her. She affirmed that Ella has good air flow and that the upper airway congestion persists, but it was better than last Friday. That was reassuring. Also, Ella weighed in at 7.9 kilos (17.7 lbs), an increase from 7.7 kilos last Friday. Weight gain is good for Ella. It confirms that the increase in volume of food is helping. Now, we just need to make sure that it is a good weight gain. As we put her to bed tonight, her heart rate did seem a bit higher than normal. Again, we are hoping it was good weight gain and not fluid retention.

The occupational therapist visited today and it was a successful session for Ella as she sat in her chair for 45 minutes. She already made progress from last week, simply with all if us playing around her mouth more and making her drink diluted juice again. Progress is slow, but Ella is following the same pattern as last time in Gainesville.

The rate of 31ccs per hour on a continuous feed seems to be going well. We are going to stick with that volume for a few more days before we try increasing the volume more. Our goal of 32 ccs per hour is not far off, although we were supposed to be using 26 kcal and we are only using 24 kcal. I’m hoping that adding corn oil will do the trick. Once we can see some solid weight gain on 32ccs at 24 kcal formula, we can try working towards bolus feeds.

We are scheduled to see the pediatrician next week. That will be good to see Dr. Perry again. It has been a long time.

I couldn’t believe that it was Halloween today…mostly because it was 70 degrees and sunny. It is usually bitter cold and/or snowing on Halloween in Denver. I am so thankful for the last few days of sunshine. I’m not mentally ready for snow, but I know it is around the corner.

Ephesians 3:20 (The Message)
God can do anything, you know—far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us, his Spirit deeply and gently within us.

Ella seemed to be doing a bit better today. Although she was not that excited to wear a Halloween costume. She could tell that she was getting lots of attention by her outfit, but I think it was uncomfortable. Ella loves to grab her feet and kick. The outfit made it tough to do her daily foot kicking exercises.

The home nurse came to listen to her. She affirmed that Ella has good air flow and that the upper airway congestion persists, but it was better than last Friday. That was reassuring. Also, Ella weighed in at 7.9 kilos (17.7 lbs), an increase from 7.7 kilos last Friday. Weight gain is good for Ella. It confirms that the increase in volume of food is helping. Now, we just need to make sure that it is a good weight gain. As we put her to bed tonight, her heart rate did seem a bit higher than normal. Again, we are hoping it was good weight gain and not fluid retention.

The occupational therapist visited today and it was a successful session for Ella as she sat in her chair for 45 minutes. She already made progress from last week, simply with all if us playing around her mouth more and making her drink diluted juice again. Progress is slow, but Ella is following the same pattern as last time in Gainesville.

The rate of 31ccs per hour on a continuous feed seems to be going well. We are going to stick with that volume for a few more days before we try increasing the volume more. Our goal of 32 ccs per hour is not far off, although we were supposed to be using 26 kcal and we are only using 24 kcal. I’m hoping that adding corn oil will do the trick. Once we can see some solid weight gain on 32ccs at 24 kcal formula, we can try working towards bolus feeds.

We are scheduled to see the pediatrician next week. That will be good to see Dr. Perry again. It has been a long time.

I couldn’t believe that it was Halloween today…mostly because it was 70 degrees and sunny. It is usually bitter cold and/or snowing on Halloween in Denver. I am so thankful for the last few days of sunshine. I’m not mentally ready for snow, but I know it is around the corner.

Ephesians 3:20 (The Message)
God can do anything, you know—far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us, his Spirit deeply and gently within us.

Ella was feeling better today. Her cold is still hanging on, but you could just tell that she was feeling more like herself. I mean, she even kept adjusting her headband to an 80′s aerobic style. If she keeps up the foot grabbing too, she’s going to turn into an Olivia Newton John look-alike.

The PT session went great. Ella practiced sitting up, rolling over and having tummy time – - all things that will help build her core strength. Once again, we’re feeling so blessed that we have a great PT that understands Ella and has a sincere desire to help her reach her goals. That is a rare find.

Today, Grandma Eusey altered Ella’s halloween costume, so it can accommodate her g-tube. Nope, we can’t ruin the surprise. You’ll have to wait to see the Bun dressed up!

We know of another family that has arrived in Gainesville to have Dr. Kays help save the life of their baby with CDH. Please pray for their baby girl and her brother (twins) that are due to arrive in December (You can read their story here).

I ran into an inspirational devotional message this morning regarding burdens and I wanted to share an excerpt:

Our challenges vary greatly: a single Christian mom may have the awesome responsibility of raising children in an ungodly world that seeks to destroy them; an angry misunderstanding may leave the head of a household without a job; or a past sin can result in deep scars of guilt that weigh a person down. Regardless of the type of problem or its source, the question is, How are we to handle the burdens that come our way?

Oftentimes, the difficulties God has sent or allowed in my life have been so unpleasant that I prayed He would remove them. However, when I looked back later and realized all that my suffering had taught me about the Lord, I prayed, “Thank You that You knew better than I did. Thank You for not making it easy.”

Psalm 55:22 (NLT)
Give your burdens to the Lord,
and he will take care of you.

Ella was feeling better today. Her cold is still hanging on, but you could just tell that she was feeling more like herself. I mean, she even kept adjusting her headband to an 80′s aerobic style. If she keeps up the foot grabbing too, she’s going to turn into an Olivia Newton John look-alike.

The PT session went great. Ella practiced sitting up, rolling over and having tummy time – - all things that will help build her core strength. Once again, we’re feeling so blessed that we have a great PT that understands Ella and has a sincere desire to help her reach her goals. That is a rare find.

Today, Grandma Eusey altered Ella’s halloween costume, so it can accommodate her g-tube. Nope, we can’t ruin the surprise. You’ll have to wait to see the Bun dressed up!

We know of another family that has arrived in Gainesville to have Dr. Kays help save the life of their baby with CDH. Please pray for their baby girl and her brother (twins) that are due to arrive in December (You can read their story here).

I ran into an inspirational devotional message this morning regarding burdens and I wanted to share an excerpt:

Our challenges vary greatly: a single Christian mom may have the awesome responsibility of raising children in an ungodly world that seeks to destroy them; an angry misunderstanding may leave the head of a household without a job; or a past sin can result in deep scars of guilt that weigh a person down. Regardless of the type of problem or its source, the question is, How are we to handle the burdens that come our way?

Oftentimes, the difficulties God has sent or allowed in my life have been so unpleasant that I prayed He would remove them. However, when I looked back later and realized all that my suffering had taught me about the Lord, I prayed, “Thank You that You knew better than I did. Thank You for not making it easy.”

Psalm 55:22 (NLT)
Give your burdens to the Lord,
and he will take care of you.

I’m thinking Ella is doing a little better today. Not quite as snotty, and her cough doesn’t sound as bad.

I’m hoping a good nights rest will let Ella and me kill off our colds. Kelly is still fighting hers, but we’ll see how she is in the morning. Tina and Grandma Mary have avoided getting sick. They spent the evening at our sweet neighbors house enjoying some homemade Mexican food. Tina brought Kelly and me a couple plates over before they left us. Thanks for the dinner Estela!

Praying that those of us that aren’t sick don’t get sick, and the ones that are get better soon.

As Ella went to sleep, Tina increased her rate of food to 31ccs per hour. We’ll see how she does overnight and into tomorrow. This brings her overall volume to 744ccs, only 24ccs below her goal. However, the biggest difference is that she is on a lower calorie formula. Once she can tolerate the volume, we can work on the density of the food.

I’m fading, so I’m going to join my child and beautiful wife in sleep. G’Night…

I’m thinking Ella is doing a little better today. Not quite as snotty, and her cough doesn’t sound as bad.

I’m hoping a good nights rest will let Ella and me kill off our colds. Kelly is still fighting hers, but we’ll see how she is in the morning. Tina and Grandma Mary have avoided getting sick. They spent the evening at our sweet neighbors house enjoying some homemade Mexican food. Tina brought Kelly and me a couple plates over before they left us. Thanks for the dinner Estela!

Praying that those of us that aren’t sick don’t get sick, and the ones that are get better soon.

As Ella went to sleep, Tina increased her rate of food to 31ccs per hour. We’ll see how she does overnight and into tomorrow. This brings her overall volume to 744ccs, only 24ccs below her goal. However, the biggest difference is that she is on a lower calorie formula. Once she can tolerate the volume, we can work on the density of the food.

I’m fading, so I’m going to join my child and beautiful wife in sleep. G’Night…

Ella didn’t seem to feel as good today. She seemed to be coughing and sleeping more than usual.

In the morning, she was acting like herself while she played on the mat. But then, she seemed to get tired easily and would have a change of mood with no real warning. The afternoon was harder. She was resting during the 2pm hour when the PT arrived. So Kelly tried to wake her up and coax her into a PT session. First, she seemed okay and then she simply decided that she did not want to have anything to do with PT. After a major meltdown and lots of cuddling with Kelly, she went back to sleep.

We’re hoping and praying that the sickness subsides and does not get worse. So far, it appears to all be in her head area versus her chest and lungs. This is much better, but not ideal.

Sometimes it just hits me and I wish I could make it all go away for her. It just seems like she rarely ever gets a break. It always seems to be some medical condition that is ailing her.

Her increased food seems to be going well. We increased to 29ccs per hour (24 kcal) last Friday. I’m thinking we might try increasing soon, maybe tomorrow. We’ll see how she does tonight.

When she had enough of the day and decided to retire, Grandma Eusey was there to cuddle and rock her to sleep.

1 Peter 5:7 (Amplified Bible)
Casting the whole of your care [all your anxieties, all your worries, all your concerns], once and for all on Him, for He cares for you affectionately and cares about you watchfully.

Ella didn’t seem to feel as good today. She seemed to be coughing and sleeping more than usual.

In the morning, she was acting like herself while she played on the mat. But then, she seemed to get tired easily and would have a change of mood with no real warning. The afternoon was harder. She was resting during the 2pm hour when the PT arrived. So Kelly tried to wake her up and coax her into a PT session. First, she seemed okay and then she simply decided that she did not want to have anything to do with PT. After a major meltdown and lots of cuddling with Kelly, she went back to sleep.

We’re hoping and praying that the sickness subsides and does not get worse. So far, it appears to all be in her head area versus her chest and lungs. This is much better, but not ideal.

Sometimes it just hits me and I wish I could make it all go away for her. It just seems like she rarely ever gets a break. It always seems to be some medical condition that is ailing her.

Her increased food seems to be going well. We increased to 29ccs per hour (24 kcal) last Friday. I’m thinking we might try increasing soon, maybe tomorrow. We’ll see how she does tonight.

When she had enough of the day and decided to retire, Grandma Eusey was there to cuddle and rock her to sleep.

1 Peter 5:7 (Amplified Bible)
Casting the whole of your care [all your anxieties, all your worries, all your concerns], once and for all on Him, for He cares for you affectionately and cares about you watchfully.