Posted (Tina) in All Posts on August-2-2009

It’s been a busy week.

Ella had her 2 year checkup with her pediatrician this past Thursday. Her weight was 25.5 pounds (35% percentile), 33.75″ long (45% percentile), and 18.87″ head circumference (60% percentile). Dr. Perry was happy with her progress. He wants to see her gain 1 pound every 3-4 months for the next year. He noted that she had great weight gain the past several months and she is on a great growth track; pretty normal for most kids. So, we don’t have to do any fluid increases with formula. He noted that we should try and reduce the number of feedings each day to 3 times per day (currently, she is at 5 times per day). Also, we’ve been working up to using baby food via the g-tube. He said that we should work up to using 2 jars of baby food via her g-tube each day. The pureed food will help give her more calories without impacting fluid. He is planning on researching the Junior formula made by EleCare. Although he is fine with her staying on the current formula for up to another year, he wants us to move towards a formula that is more age-appropriate for toddlers.

“I is not been drinking ociffer”

Ella had some granulation tissue around her g-tube that he took care of for us. Also, she received her Hepatitis A shot, so now she is all current. He thinks we should fight for Ella to receive Synagis shots again this year. Our current insurance company told us that the synagis shots are not effective after a child is 2 years old. Dr. Perry is going to research and get back to me. We are scheduled for another appointment on October 1st. He wants to make sure that Ella receives a flu shot before the fall starts.

Dr. Perry noted the dark spots on some of Ella’s teeth. I’m so thankful that he had the name and number of a pediatric dentist that is tied into the Children’s Hospital. Given Ella’s history, I can’t take her to a regular dentist. She will need to be sedated and I want to make sure that it is someone that deals with special needs children, especially considering all of her medical needs. Dr. Perry told me that many times kids will get the spots and it turns out to be a short-term issue with no lasting impacts. He agrees that it is likely from her medicines and just being sick for so long when she was an infant. But he wants us to go get it checked out.

One thing that Dr. Perry said hit home pretty hard. He asked about her oxygen requirements. I explained that they have really not changed much since we came home last year. We saw a slight improvement after her SVC procedure, but not a huge amount. She is currently 750ccs during the day and 500ccs at night. Then, he took a deep breath and told me that he thinks I need to have a long-term perspective when it comes to the oxygen, especially because we live in Denver with the higher altitude. Then, he told me that many of his patients that are on oxygen like Ella do not grow a significant amount of lung tissue to make a difference in the supplemental oxygen needs until they are 7 years old. My heart sank…until she is 7 years old? He talked about how the lungs grow and develop and that with many of his other patients, it has taken many years. Wow, that was not what I expected to hear.

When we walked out of the doctor’s office, Josh was waiting in the car to pick us up. When we approached him, Ella distinctly said, “Da Da”. That is the first time that we feel like she has intentionally recognized Daddy in that way. It made Josh’s day!

We used the yearly pass for the zoo that Grandpa gave Ella for her birthday and went to visit the animals again. It was just nice to walk around, sit in the shade, people watch, and of course, look at the beautiful tigers, leopards, giraffes, etc. Also for the first time, we went to City Park and just laid down a blanket in the shade. Ella took a snooze and then woke up and looked around at the grass, trees and squirrels. It was a nice, relaxing time as a family. Just trying to live in the moment and enjoy our time together.

On a personal note, one of our rental properties was ready to be turned. So most of our free time was spent getting it ready. We feel blessed to have found a great new tenant. The Lord provided and we were able to turn the unit without any down time.

Josh had an interview last Friday. We’re not sure how that will turn out – just waiting to see what happens next. My desire is to stay at home with Ella, but we it doesn’t look like that is going to be financially possible, even if Josh gets a job soon.

Please continue to pray that the Lord will guide us in the next steps. We desire to be obedient to Him and follow His leading in our lives.

Psalm 143:8 (NLT)
Let me hear of your unfailing love each morning,
for I am trusting you.
Show me where to walk,
for I give myself to you.

Kellie on August 2nd, 2009 at 10:25 pm #

I’m so happy to hear that she’s growing well. Looks like you had a great day at the zoo as a cute little family 🙂
I know that Carter and Ella aren’t the same, but we will be transitioning from formula to a more appropriate food for an older baby (he’s still tube fed) and his Docs want us to begin using Nutren Junior with fiber. Just thought I’d throw it out there as a possiblity that might work for Ella.

We’ll be checking in to see how the job interview goes and for Ella to keep shouting out new words!

Joel Snyder on August 3rd, 2009 at 5:42 am #

Ella, It sounds like pretty good news from Dr.Perry and as always keep up the steady progress. I am so glad that you have had the time to visit the zoo. I know that the animals are quite interesting to you. Josh and Tina I am praying that the job searchs go well. Ella if you have “Da Da” down it won’t be long before we hear some new words. Have a great week. Love,Grandpa!!!!!!!!!!!!!!!

Joan and Steve Odell on August 3rd, 2009 at 6:25 am #

Great news about her growth and introducing new food, etc. to help her along. How beautiful to hear those words, Josh. Prayers continue for the right job and Ella’s continued progress. Hugs – Steve and Joan

Williamsburg on August 3rd, 2009 at 2:18 pm #

Yea for fun zoo days; glad you got in before it got hot this week. How exciting to hear Da-da – another happy milestone to celebrate. I know the prognosis with the oxygen has to be tough to hear, though, and will take some perspective adjustment time. Will continue to be praying for God to supply all your needs. XOXOXO

sherry martinez on August 3rd, 2009 at 2:48 pm #

Have hope on the oxygen as i dont know about the altitude but cayden just got off during the day and is only on a 1/4 liter at night. so you never know she needs to develop physically so I just wanted to bring you some hope on that front.I pray for you guys finding work and doing what is best for ella. hugs from cayden and sherry

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