Posted (Tina) in All Posts on April-10-2008

…so I can…so I can…watch you live and breathe your story lines.

Yeah, the Corey Hart song was definitely in my head today. I took Ella for another walk in the Baby Bjorn, sporting her sunglasses. By the time we came back into the apartment, she had fallen asleep. So I just laid her in the crib, sunglasses and all! The sunglasses fasten with velcro around the back side of her head and trying to remove them would have caused too much commotion. She looked way too cute sleeping with sunglasses.

Ella had a great night of sleep last night. She only woke up about 5 times total. I would give her what she wanted and she would just roll over and go back to sleep. That was a blessing for me. Hey, at this point, even 7 hours of slightly interrupted sleep is amazing!

We are having a nice break from the flurry of doctor appointments this week. We have simply been at home trying to help Ella gain weight while doing our feeding and physical exercises. It has been great to not have to go anywhere. Tomorrow we have a occupational therapy appointment, but the OT comes to the house, so that won’t require a “trip” with Ella.

Next week will be busy with 2 physical therapy appointments, an OT appointment as well as the pediatrician appointment for her check-up and synagis shot. So it will feel busy again!

Today, Ella finally tolerated her swing. We purchased it weeks ago but she would get fussy after a few minutes. I think the sitting position would get uncomfortable. I think our chair exercises are helping. I didn’t take a picture, but she actually fell asleep while it was swinging with music.

Ella is starting to get granulation tissue around her g-tube again. It seems like we have been able to keep it away for about 3 weeks. It isn’t bad right now, but it will be ready to be burned off by the time we see Dr. Kays on April 22nd.

Ella had a visitor today. Sara came over to see her again. Unfortunately, the stranger anxiety kicked-in early on the visit. So Sara stayed afar and watched Ella, making sure to give her space. During the visit, it was time to eat! It was actually Ella’s best feed for the day; she took 40ccs total. That is great too considering that Sara was standing there talking to me and watching Ella. If you remember, last week the OT was watching Ella and she decided to have a meltdown! Hopefully tomorrow will be a better session.

Well, we officially got an appointment with Dr. Steve Abman in Denver at the Children’s Hospital. I’m very excited that came through for us. Now, we still need a really good pediatrician. Ideally, it would be someone close to our home. However considering Ella’s health situation, I’m willing to drive.

I placed a request online to the ParentSmart Line at the Children’s Hospital to see if they can advise on a primary care doctor. Maybe there is a doctor affiliated with the hospital that would be perfect. The main need is a doctor that can help with all of Ella’s various health issues, give a referral if they do not have expertise in a specific area, as well as help to coordinate appointments with other specialties.

I am getting ready to start the process for the occupational and physical therapy search. Our ideal situation would be to have care provided in the home. Each state has an Early Intervention Program that is federally funded. I need to schedule a time where they can evaluate Ella, so they can assign a service coordinator that will come out to our house and go over the whole program.

Our hotels, rental car, flights, and all those types of details are already booked for the trip home. Grandma Eusey even has her plane ticket to Denver, so she can be ready to help upon our arrival!

In looking at the calendar today, the time to leave is going to arrive sooner than we know it. The countdown is only 44 days until Josh makes the first trip to Denver and 47 days until Ella leaves Florida for the first time!

Here and there, it hits me. I’ll read one of your comments, or tell Ella’s story to a stranger and I’m humbled by how God has used this painful time to bring glory and honor to Himself. I can’t believe that God chose us to be the parents of Ella and that we came all the way to Florida to deliver our baby girl. In addition, that all of you have decided to follow our journey and provide friendship and support, beyond anything we would have ever imagined.

We’re so thankful.

1 Samuel 2:1-2

Then Hannah prayed and said:
“My heart rejoices in the LORD;
in the LORD my horn is lifted high.
My mouth boasts over my enemies,
for I delight in your deliverance.

“There is no one holy like the LORD;
there is no one besides you;
there is no Rock like our God.”

Lisa Richmond on April 10th, 2008 at 7:38 pm #

oh my gosh! those are the cutest, chubbiest cheeks! looks like the calories are kicking in! We too…are on the countdown!.. We’re missing our babies too! (cousins, neices and nephews oh my!)

We don’t have an exact date…but are hoping to have that firmed up too as well!

I love checking in on you and the bun every night! …as I’m typing this, my “lil’ bug” is asleep on the couch next to me…and to think that she was once the size of Ella! wow! They grow up so fast!

Hugs and kisses and prayers and wisdom and strength for all of you!

Keith Grow on April 10th, 2008 at 7:52 pm #

Again, I’m glad to see that Dr. Abman is going to see you’re little one. You mentioned looking for a good Primary Care Doctor (Pediatrician). Here’s our recommendation IF you can use her. She was sought by one of the NICU doctors for her own baby, and our little girl seen her herself. Dr. Sharise Arnold Rhering is her name, I’m not terribly sure of the spelling but Tiffani and I really have enjoyed her work. She may strictly be a Kaiser Doctor, but don’t quote me on that.

Lord bless…., the Lord HAS blessed!! With the greatest gift he can give.

Pam on April 10th, 2008 at 8:51 pm #

I live in Wash Park, and have a great pediatrician recommendation for you. Would you mind sharing your email with me? (feel free to check out my blog) I would rather email you the information!
Your blog is an inspiration to me, and I hope to run in to you sometime in Denver! 😀

Joel Snyder on April 10th, 2008 at 9:38 pm #

Ella, Glad to see you and Mom bugging around in the Florida sun with your shades on. Enjoy your week with no appointments and just hanging out at the apartment. I will be praying for continued progress with feeding issues. It snowed last night and today but it looks like good weather for the next several days. I will catch you later. Love,Grandpa!!!!!!!!!!!!!!!

Lizotte Family on April 11th, 2008 at 4:17 am #

She looks fabulous! Swings are the best. It’s good to hear that she is liking it. Rocky Mountain High, here comes Ella

Gloria & Red Jacobsen on April 11th, 2008 at 4:36 am #

Hi,Tina & Josh,We love the adorable pictures of Ella. We pray for her full recovery every morning .In reading the problem she has with her feedings, it may me wonder, if maybe the doctors could sweeten her formula?The reason, I say that, is,out of curiosity in nursing my children,occasionlly, I would taste a dripping of the breast milk,I found to my great surprise, the breast milk tasted like candy,it was so sweet! !I was amazed to discover this,but maybe that’s the way God designed milk for babies taste buds.Just a thought. We are also praying everything goes smoothly on your trip back to Colorado. All the best! Gloria & Red

Matt, Abby, Austin & Caed on April 11th, 2008 at 4:47 am #

Praise be to the God and Father of our Lord Jesus Christ! In His great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead.
1 Peter 1:3

O LORD, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago.
Isaiah 25:1

Steve and Joan Odell on April 11th, 2008 at 6:15 am #

Thanks be to God and all his glory! Ella you have come so far and what a journey for you and your folks. So happy for you that you will now be heading home to Colorado. We hope to meet up with the West family some day when we are in CO to visit our family. The Lord will guide and keep you in his hands. Hugs – Steve and Joan

Chambers Family on April 11th, 2008 at 7:33 am #

So Sweet with Minnie Mouse – you know some day in the near future, Ella will be begging to go to Florida to Disney World to meet the Disney Princesses and maybe see Dr. Kays while you are close by.

Glad you are in planning mode – it always feels so much better having a plan and implementing it.

In regards to swinging; my daughter lived in her little table top portable swing – it went everywhere with us… But Emery; my poor breather baby – loved the boucey vibrating chair. We actually had to buy a second once since he wore out the first one. And we didn’t dare turn the vibrate off!!! That was an awaking you didn’t want to see!

Ella is making milestones everyday – you are an amazing Mom with incredible perseverance. I enjoy the pictures and blog every day. Thank you for sharing your lives with us intimately.

Eve Sheridan on April 11th, 2008 at 9:01 am #

That little face is irresistable, and it looks like someone is a Minnie Mouse fan! So glad you guys will be coming back to Colorado soon. Let us know if we can help with anything here to make it easier once you arrive :-).

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