Posted (Tina) in All Posts on July-24-2011

I can’t believe that it is Ella’s 4th birthday. Today is always a day of celebration, but it also brings back lots of memories surrounding Ella’s birth and her first four years of life. The hard and stretching parts. But then she smiles at you, and all of that seems to disappear. You can’t help but get overwhelmed at realizing just how much she has overcome. She is an amazing, happy little girl with the sweetest spirit. We love our little girl and praise God for the amazing blessing of Ella Renae.

For all of you Ella fans, it’s been over two months since a post. Sinful on our part. Let me see if I can catch you up on the highlights.

First and foremost, I’m happy to let you know that all your recent prayers for Ella have been answered. We continued to have retching challenges and overall feeding discomfort until mid-June. It seems like we have tried every possible idea to help improve her situation and overall comfort, but nothing seemed to do the trick. It wasn’t until we combined several ideas simultaneously that the magic took place. Since that time, Ella has been doing fantastic!

We met with her pulmonologist in late May. Although Ella had tried a “blast” of steroids over 5 days, the improvement in retching was temporary (lasting only 1-2 days). Since there was improvement, it led her pulmonologist to suggest a continuous, low-dose of steroids. Apparently, taking a low dose every other day provides all the benefits of steroids yet reduces the long term side effects. Plus, many kids with chronic lung disease experience some type of improvement with taking steroids (since it reduces inflammation). The doctor was not convinced it would work, but felt confident that it wouldn’t hurt her and it was worth giving it a try. After months of trying different things and not having success, we decided to give it a go. Although we did not want Ella to take more meds, we felt out of choices.

We added the steroids and noted that her breathing seemed less labored. She was requiring 50% less oxygen. This was not expected but a nice surprise. Since she started taking them, her overall oxygen requirement went from 1 liter to .5 liter. Her color seems better and if she gets disconnected from the oxygen, it takes a lot longer for her to desaturate.

The steroid on its own didn’t solve the retching, but it was benefitting her so we continued taking it. Along with it, I decided to eliminate dairy from her blenderized diet. In place, the nutritionist suggested a calcium supplement (we had already tried soy and almond milk, neither had great results). It was hard to know if the dairy was causing a problem, but I felt it was safer to eliminate it as a variable and just give the calcium supplement. So the base ingredient of her blenderized diet is just water. Finally, we tried a feeding schedule with less volume per feed, but increased the amount of feeds per day. We also noticed that she could not have any food within the first hour after she woke up. So during the rest of the waking hours, we have 6-7 bolus feeds, 160ml each. I kept trying different amounts and different schedules. On their own, nothing worked before – not even a continuous drip feed. But with the steroids in her system, we found something that worked! The retching is 90% eliminated. Most of the time if we stick to the schedule, she feels good and her discomfort is minimized. If she does have retching, it passes quickly.

Right after her visit with the pulmonologist, we met with the GI doctor. We discussed discontinuing sulfasalazine, a medicine that she’d been taking for the past year. When she was hospitalized last summer and diagnosed with eosinophillic colitis, she started taking this medicine. We were cautiously optimistic that enough time had passed and maybe she could tolerate being off of it. Rather than make any sudden moves, we made all the changes with the steroid and feeding changes, waited till she seemed stable, and then started a very slow wean of the med (about a 4 week weaning schedule). She’s been doing great without the medicine. Along with that change, we were able to reduce the amount of Miralax she requires each day from 1.5 capfuls to 3/4 capful per day. It seems like her GI system has finally stabilized from her GI surgery in April 2010 (can you believe it took 14 months?).

We can always tell when Ella is feeling good. Besides the constant smiles, she makes the most improvements with her developmental milestones. Probably the biggest change is in the area of communication. Earlier this year, she started grabbing the therapist’s hand to initiate a toy or hit a button on a toy. Of course, the therapist would then try to get her to initiate the button on the toy. But somehow this simply translated for Ella. If she grabs someone’s hand, she can direct them to what she wants. About 6 weeks ago, she came over and grabbed my hand and took me from the family room to her play room and placed my hand on a clear box that contained toys. She was trying to tell me that she wanted one of the toys in the box. Sure enough, I opened the box and she grabbed the toy in excitement. That is HUGE for her. Fortunately, she was able to make this association and now it has translated to other things too:

  • When she wants to watch a movie on her iPad, she grabs your hand and places it on the screen. If the video stops playing or she wants a different video to play, she grabs your hand and guides you to the screen.
  • She’ll grab your hand and guide you where she wants to go. The other day, she grabbed Josh’s hand and took him to the front door. She wanted to go explore outside, so they went for a little stroll. Or she’ll grab your hand and start climbing the stairs and then place your hand on the child safety gate. This is her way of telling you that she wants you to take it down, so she can climb the rest of the stairs and go explore upstairs.

  • She’ll go up to any door and close it for you. It might be her bedroom door, the front door, the dog crate, etc. She likes to shut doors!
  • One of her toys has a button on the top that activates lights and music, but you need to use the tip of your finger to push it. She hasn’t quite got the coordination for that yet, but she knows what happens if you push the button, so she will grab your hand for you to push the button.
  • She’s figuring out light switches. We’re starting to see lights turn on and off around the house!

All of this is so exciting – – for her to show some leaning of communication. Although no words are exchanged, we are beginning to figure out what she wants. This may be a great foundation for her speech therapist to use in the coming weeks/months. Speaking of speech therapist, we ended up switching since our last post. The therapist we have has only come about 4-5 times and she is amazing with Ella. Again, we’re already seeing some progress. For example, Ella loves to clap right now. She’s been doing it just because she’s realized that she can make noise with her hands, but the therapist has also been able to get Ella to clap on demand for “more” (close to the sign language equivalent). Anyway, good stuff on the communication front.

We were bummed about losing our respite care provider for date nights. As we shared before, our provider needed to have leg surgery and would not be able to walk anytime soon, much less take care of Ella. Her last visit was June 1st. The blessing in all of it: she has a friend with similar respite care background that is getting married and moving to Denver. She asked her on our behalf if she had interest in watching Ella for us. We interviewed her and she is going to become Ella’s new respite provider! We’re so excited. This means that once she is trained, date nights can resume for us likely in August sometime.

In the meantime, we’ve had a loyal Ella fan that lives locally that has been visiting Ella this summer. She makes a long drive (about 45 minutes to an hour) and simply comes with no strings attached to play with Ella. It has given me time to complete contract work and do other duties around the house, knowing that she has someone watching and playing with her. More than that, Ella has made a new friend (so has Lucy). Very sweet.

Besides the amazing improvements for Ella, we’ve been busy doing lots of maintenance on the RV. First, we started by getting all the necessary repairs completed (generator, brakes, exhaust manifold, toilet, new sleeping area/oversized mattress in back, gate for Ella, etc.). Then, we replaced the carpet which made it almost seem new inside. We wanted to get it ready so we could use it over the summer. Once it was ready, we had an itch to go camping. So we took it over Memorial Day to Moab, Utah to enjoy the views of the red rocks in Archer National Park. It was a last-minute trip but provided a great change of scenery and let us “test” out the RV to make sure all the kinks were worked out. This was also the first time that we tried “dry camping” or “boondocking” (camping in the wilderness without hookups or other facilities; just preserving water and using what you have on board the motorhome). It is free and often times, you can find great spots with amazing views. This experience opened our eyes to a new style of camping that we really like!!! Fortunately, there are tons of natural outdoor spaces in Colorado to explore in the summer. So we ended up finding one in Moab with great views of the backside of Archer National Park and then found a free spot in Colorado on the way back home.

We also used the RV for another “dry camping” experience in the Twin Lakes area of Colorado, just south of Aspen, when a long time friend came to visit us for a week. We took her around tons of scenic and noteworthy places in Denver and Boulder, but then wanted to make sure that she experienced the splendor of the Rocky Mountains. On the way to Twin Lakes, we stopped by Copper Mountain for a break. We used the pool to give Ella her first pool experience. She loved it!

After camping overnight with a view of the Twin Lakes, we drove on a scenic byway up to Aspen and hiked the Maroon Bells. Crazy beautiful scenery!

Speaking of hikes, I also wanted my friend to see Red Rocks Amphitheater too. On a side note, I recently purchased a child carrier from someone on Craigslist. Our friend is a triathlete and just adored Ella, so she offered to try out the child carrier and carry Ella around the Red Rocks Park. As the pictures demonstrate, Ella had a great time on her first hike!

Once our friend returned home, the last week of June was quickly approaching. Since Ella was doing so well and work had finally slowed down for me (very busy in May and June), I decided that it was time to head to CA to see my mom. She had already gone through one round of chemo and I was nervous that I might not have a chance to see her (I hadn’t seen her in over a year). Since Josh couldn’t afford a long stretch off from work, he got in the car and drove me and Ella to California over a weekend. We drove 10 hours and stopped in St. George, Utah. Then, we woke up and drive the remaining 6.5 hours to Orange County. There was about 1.5 hours until Josh’s flight back to Denver, so we snuck down to Balboa to see his grandparents! This whole trip was a last minute idea, but fortunately my aunt was nice enough to open her guest room up. So while Josh went back to Denver, Ella and I started the family visits.

Most days, we hung out with Ella’s aunt, uncle, cousins and Grandma Eusey. It was fun to watch Ella and her other family members interact together. I loved it when she started grabbing their hands to activate a toy or change her video on the iPad. We got to spend a good amount of time with Grandma, even keeping her company on another round of chemo. There was lots of baking that week (I couldn’t avoid the itch to bake and cook with family members) and of course, enjoy the sweets that came from our efforts! Once my mom had another round of chemo, she felt ill and needed rest. So then, we switched gears and hung out a lot with Grandma West. In between, we caught up with some of the Snyder gang in Laguna Niguel. All in all, a great visit focused on family.

After a week and a half of family time, Josh took the week of 4th of July off from work and flew out to CA to meet up with us. From So Cal, we started our drive back but stopped in Vegas for 4 nights to enjoy some family time for just the three of us.

Lucy and Lola were at a doggie daycare facility and Macy had free reign of the house while a neighbor checked in on her. We got an amazing upgrade to a suite in a new Vegas hotel with the best views of the Bellagio fountains at night off our own private terrace!

We took Ella to the pool and enjoyed some true relaxation.

When we left Vegas, we drove 10 hours to Beaver Creek, an upscale Colorado resort and stayed overnight before making a short drive home the next day. We finally arrived home on Mon, July 11th.

Since that time, lots has happened. Ella’s Grandpa went in for a cath lab procedure and had a stent placed in his carotid artery, to help prevent reoccurrence of stroke. We watched his dachshunds for him and it was a crazy house with all 4 dogs for a couple of days! Also, I unexpectedly received a call with a potential full time job offer. As you know, I’ve been doing contract work for a year and a half which has worked well while watching Ella full time. But this sounded like a great opportunity for a job working from home with limited travel, so I flew to San Francisco to check it out and interview. Let’s just say that I have an offer letter in hand. Simultaneously, Josh was willing to quit his gig and give me a chance to explore my career opportunity; he’s appreciated me staying home with Ella but knows that I’ve missed working and was willing to watch Ella for a time. And although he had talked to a few companies over the past weeks, he was not really expecting anything to happen right away. Yet once Josh gave notice expecting to take care of Ella for awhile, he unexpectedly received a job offer for a new company too! Josh will start with his new company on August 1st (they wanted him to start right away) and mine wants me to start ASAP as well, but I need to find the right caregiver for Ella.

Amongst the craziness, I hit a deer going 45-50mph down the street from our house on a major road and crashed the front of our Jetta. It is in the body shop getting repaired (the car that is), but it was very scary. Praise God for his angels that were watching over me! It could have been so much worse, but I only got one minor bruise from it all.

And the interview process for nannies has started. Please join us in praying that we can find the right caregiver for our sweet, miracle child. We were burned the last time we went down this path and are hopeful that we can find someone that wants to become part of our family, someone who wants to love on our beautiful daughter, someone we can trust. The better part this time: I will be working from home most of the time in a nearby room. If I’m going to have a full time job, this is an optimal situation and we feel abundantly blessed for our new opportunities.

Also in the weeks ahead, we have Grandma Eusey coming to stay with us for 2 weeks, with a short trip to Copper planned. Ella has a visit with her pediatrician scheduled and for the first time, we have to take Ella to the dentist! That should be interesting. All of this, plus starting 2 new jobs and finding the perfect nanny for Ella.

Dear Lord,
We thank you for our beautiful daughter you’ve blessed us with. The mountains and valleys over the past four years have been incredibly trying and have stretched us beyond what we thought we could handle and yet, it has only shown us that when it all comes down to it, we have to rely on you for strength to get through the days. Thank you for blessing Ella Renae with her health right now. We pray that continues and that she can make great strides developmentally as she works with her various therapists. Also, we pray for you to bring us the right caregiver for Ella. We are confident that since you orchestrated all of these life changes, that you will also bring us the person that you want us to invite into our home each day to oversee our amazing little girl. We praise you for the blessings of our new jobs and ask for your wisdom and guidance in the coming days.

Eve Johnson on July 25th, 2011 at 4:20 am #

The changes in Ella shine through the pictures. She’s obviously gained weight, her eyes are so bright, and the smile…! She just looks more comfortable in her own skin and in the world around her. Praise God for all of the amazing works he’s doing in your lives. May His blessings continue and abound for you.

Steve and Joan on July 25th, 2011 at 5:40 am #

what seasons of blessings the Lord has let you all through….ecstatic about her communication breakthrough. So excited about both your new jobs and all the new things happening for the West family. Prayers for the right nanny and continued positive moves forward…Happy Birthday sweet Ella….hugs and Lord bless Steve and Joan

Loren Lizotte on July 25th, 2011 at 5:59 am #

Oh my goodness. It’s just a wonderful 4th birthday and so many things to celebrate. So many awesome things are happening to all you. Congrats to everyone it seems, Josh, Tina and Ella. We always keep your family in our thoughts, prayers and our hearts.

Jennifer Tenney on July 25th, 2011 at 6:50 am #

Happy Birthday Ella! I get so excited when I see an Ella update! I am so glad it is a good one and that Ella’s retching has gotten so much better! What an amazing girl! Many prayers for the perfect caregiver!
Mom to Dakota 12-25-2008
R-CDH survivor

Pat Hadden on July 25th, 2011 at 7:25 am #

See, there was a reason I was thinking of you. It’s Ella’s birthday! Much love to you all.

Liz Nelson on July 25th, 2011 at 9:53 am #

Happy 4th Birthday Ella! Can’t believe its been a year since we last saw all of you. I love all the videos. She looked so excited walking nextto daddy. So happy to see her walking. Congrats to you both on your new jobs. We will pray you find the right caregiver. Always thinking of you all and praying each day for Ella. Praise the Lord for all the wonderful milestones she has reached and willreach in the near future.
Liz, Shane, Nayeli,Eli, and Eliana

Eve Sheridan on July 25th, 2011 at 12:24 pm #

Sending lots of warm birthday wishes for sweet Ella – she looks absolutely wonderful. Such a happy girl with a contagious smile. SO glad to hear the retching has reduced considerably…and the communication progress is HUGE!! So happy for you all – looks like you had a very nice trip too. The photos are just beautiful. Also best wishes to you guys on your new professional endeavors!

Christe Mitchell on July 25th, 2011 at 1:37 pm #

Happy 4th Birthday Sweet Ella : )

Jennifer Harris on July 25th, 2011 at 1:48 pm #

What a special treat to see Ella and hear positive news about her progress. Yes, GOD hears our prayers! Thank you for sharing and we wish your family continued blessings!

Elizabeth Norman on July 25th, 2011 at 2:02 pm #

I was so excited to see your email today and to look at all the photos and videos. She is so adorable and has come such a long way. We know that our Lord has a hand in all this! So happy that you’ve been able to travel and visit family. I hope to see your mom one of these days when she’s up to it. Praying that you find a wonderful nanny.

Tony Lazio on July 25th, 2011 at 5:11 pm #

Such great news. So great to hear about all the blessings.

Rusty Rich on July 25th, 2011 at 8:16 pm #

Happy Birthday Bun!! Lots of love from Birmingham!

Love, Rusty, Liz, Par and Jack

Linda on July 27th, 2011 at 8:38 am #

I was having big time Ella withdrawal, so glad to hear from you and all the many strides she is making. I continually keep Ella and your family in my prayers and I am so happy for you and your new jobs. May the Lord help you in chosing the right nanny for such a miracle child. Best wishes for Grandma Eusey and Grandpa Synder with their heath issues.

Aida on July 27th, 2011 at 9:33 am #

Happy 4th Birthday Ella!

MerrileeBatchelor on July 28th, 2011 at 9:06 pm #

I enjoyed this so very much, and the
beautuful happy little Girl she is now. Beautiful area and home you have.
So cute watching her walk and not
wanting to go home,
love the pics of you too Mary,
love and prayers for a fun time
with Grandma, good luck with the
nanny,I am sure you will find the
perfect one.

Rupa Rao on July 30th, 2011 at 1:00 pm #

What an absolutely gorgeous girl Ella is!!! She looks like such a hppy, smiley little girl in all the pcitures. I am soo happy her retching issues have mostly stopped and she is in a much better place healthwise. Congratulations on the new jobs for both of you and good luck on finding the right babysitter for precious Ella. You guys are always in my prayers — Rupa

Laura Marold on August 10th, 2011 at 11:09 pm #

Happy 4th Birthday Ella! I’m so happy to hear about her communication skills. She is a beautiful little girl. Thanks so much for the update. It made my day. Love, Laura M.

Jude on August 23rd, 2011 at 8:11 am #

Ive just read the story of your little angel Ella.. I am crying when im reading it cause my baby is still in the NICU who is also diagnosed with CDH..He is 5 days old now.. after his birth in 24 hours time he undergone surgery… God is really great… I will never lose hope and still believes that God is planning something Good and great in our future. Belated Happy Bday to you Ella!

Amy Sabatino on August 25th, 2011 at 5:31 am #

Tina, I am not sure if you remember me. I met you and Josh at Shands when my son Roger was staying in the NIC Unit (Jan 08). From time to time I visit your blog to see how Ella is doing. I am very thankful for your kindness, prayers, and friendship when I was living at Shands. I am also happy to see Ella has done so extraordinary. God bless your family. Keep up the amazing work Tina and Josh, and you will find someone soon to watch your angel. Have a wonderful year 4!

Devon on September 8th, 2011 at 6:41 pm #

Checking in on you all…late getting here, but happy to see improvements. Loving her needing less O2, loving less retching!! She is so adorable and I, as always, enjoy her pictures. She looks so happy. Prayers that she continues to acquire more communication skills too!!

Post a comment

Name:  (required)
Email:  (required)