Jan
09
    
Posted (Tina) in All Posts on January-9-2012

It’s a new year! And can you believe that it has been a year since Ella came home from the hospital last? This has been the longest stretch of staying away from the hospital. On that note, Ella has been feeling well since June 2011 – going on 7 months. It is so nice to have a reprieve from the constant medical issues – everything seems to be cruising along.

We’ve been blessed by our nanny that watches Ella each day as well as her two babysitters that have been faithful in providing respite visits. As a matter of fact, Josh and I have an opportunity to go on a short vacation together in February. So between the nanny during the day and a babysitter providing overnight care, we’re going to see if we can make it work! It’s a little nerve-wracking. We’ve never left Ella with anyone except for a handful of hours at a time. It will be hard for all three of us, but we feel blessed that the Lord has put individuals in our life that have an interest in watching Ella, to give us the opportunity. So we are going to try and see if we can make it work! Pray that all the details come together and that the days are event-free!


Again, Ella has been doing great medically speaking. The only issue right now: Ella has been losing weight. Last fall, she weighed 32 pounds so the dietitian asked us to back down on some of the calorie-fillers. We did and at our check-up in November she was down to 30 pounds, but based on everything else, it was still in a healthy range. But now she just weighed in at 28 pounds, so she has been steadily losing weight since her peak weight at the end of last summer. And 4 pounds is a lot for her little frame. I wish I could report that she has gotten taller but that is not the case either. We’ve been sitting at 37″ high for a while now.


First, we tried giving her a slight amount of volume increase – 10ml to each feed. It made her sick and return to her old ways – retching and GI issues. Amazing that her system is still so sensitive. It took a full week for her to feel like herself and not have any side effects. Next, we added back more DuoCal back into her food (1/2 cup extra to each batch of food). Just from an appearance stand point, we could tell that she gained a little weight, but it is still not enough. Ideally, they would like her to weigh 34 pounds by her 5th birthday!

So, now we are going to add even more DuoCal into her food (an additional 1/2 cup to each batch of food, for a total of 1.5 cups per batch of food) and we hope that does the trick. It sure seemed to last year when we needed her to gain weight. This is a recent change as of this blog post, so pray that Ella tolerates this change and starts to put on the pounds!

We have a few chances over the coming weeks to use a professional scale and see if the food change is making the needed difference: an appointment next week with the pediatrician and another appointment later in the month at Children’s Hospital. But the true weigh-in will be in mid-February when we meet with the dietitian.

Since our last post, the holidays came and went: Halloween, Thanksgiving, Christmas and the New Year. All events were low key for the West Family. Unfortunately, Ella doesn’t recognize or understand that one day is different from another so with our busy work schedules, we left everything mellow and simple this past year. We kicked it up a notch for Thanksgiving by inviting some friends and putting on a Turkey Extravaganza complete with all the homemade fixins and 8 pies! Yes, I went a little crazy in the kitchen. For Christmas, we did manage to make a cute holiday card featuring the Bun!

A few days ago, Ella had her first appointment with the Child Development Unit at Children’s Hospital. Based on all their testing, she tested at 6 months developmentally…this hasn’t really changed from last year when she was tested by the neurologist. Once again, they gave a diagnosis of “intellectual disability” which is a more current term than the former term of “mental retardation” that was common decades ago in our culture. I admit, I’ve already heard this news. This is not new information for me or anyone that interacts with Ella on a regular basis. Yet when you hear professionals look you in the eye and tell you that about your sweet little girl, it’s really hard to hear.

And these are the types of days when it brings a cloud of gloom over you. Most days, Ella is happy and you’ve accommodated your life to a “new normal” and for survival purposes, you don’t think about it much. But when you are around other children, it’s the holidays, or at times when you are told this type of diagnosis, it’s hard not to lose hope.

Fortunately, God knows just what we need. So the next morning, I opened my email and received this daily devotional, targeted to put my mind, heart and soul back to where the truth resides.

A Hopeful Future
by Samantha Reed

“Then Job replied to the LORD: ‘I know that you can do all things; no plan of yours can be thwarted.’ …My ears had heard of you but now my eyes have seen you.” Job 42:12, 5 (NIV 1984)

Sometimes I don’t fully trust God has prepared good things. For me, for family, for friends, for others.

This past year was riddled with home foreclosures, loss of businesses, empty cupboards and gas tanks for those I love. They’ve faced suicide attempts, drug overdoses, passing of loved ones. Family and friends alike have endured marital affairs, children sentenced to jail, a second year of unemployment, cars breaking down, churches falling apart and the list goes on.

I’m not sure He can redeem the pain, recover what’s lost, heal all that’s broken. Can He truly fit the pieces of this past year into a hopeful future?

Right now, circumstances suggest otherwise. And if I rely on what circumstances currently imply, I’m apt to believe the answer is no, the Lord is not able.

But circumstances tell tales that are prone to change in a moment.

And the truth of the matter is: God never changes. His power to give a future and hope never change. His Word never changes. So when life weaves stories of doubt and hopelessness in God’s authority over circumstances, I reread accounts of His faithfulness and redemption. I refer back to the Truth…

All the while Job’s family, home, crops and health demolished…God was preparing to give him double of what was killed, stolen, lost and damaged.

The time Joseph was a slave and prisoner…God was planning for him to be second in command over Egypt.

When Ruth was a homeless, barren widow…God was creating a home in Boaz’s heart for her to be a wife, and mother, and great, great, great-grandmother to His Son.

As Lazarus was bound in grave clothes…God was forming the breath that’d give him new life.

The moment David laid down in adultery…God was laying the groundwork for him to rise up in repentance.

Every time Saul crucified Christians…God saw Paul preaching the crucified Christ.

With each strike that Sarai beat Hagar with…God saw Sarah beating her jealousy, pride and doubt with the birth of Isaac.

When Esther was an orphaned girl shaking in fear for her life…God made a way for His daughter to shake a kingdom and save His people.

As Rahab welcomed men into the shelter of her bed…God saw her sheltering the spies on her roof.

When Peter lost faith and denied Christ…God saw him bringing many to faith as he proclaimed Christ.

As Moses killed an Egyptian with his hands…God saw him chiseling the Ten Commandments with those same hands.

At the time Mary saw Jesus die…God saw Jesus resurrected and seated on His heavenly throne!

No matter what the dire, dreary circumstances, God turned each into a hopeful future.

Our key verse assures us, none of His plans can be thwarted. Despite what is happening in life, these stories of redemption and hope speak the truth. God can and will reverse, restore, revive and renew. He sees beyond the present troubles and is sparking a fire to light up the future with hope.

As we begin this New Year, let’s be on the lookout for His plans to come to pass. And trust Him that He can take any circumstance and use it for our good and His glory.

Dear Lord, I’m so grateful You not only see my future, but You’ve planned it. Thank You for Your faithfulness last year. And for recording these stories of lives You turned dreary pasts into hopeful futures. I ask that You do the same for my circumstances this New Year please. In Jesus’ Name, Amen.



Pat Hadden on January 9th, 2012 at 11:20 am #

Well the old no news is good news saw works for Ella! Hope to hear that she is gaining weight and making even more progress. Much love, Pat and Bob

Steve and Joan on January 9th, 2012 at 11:24 am #

All that you have shared about our Lord is so very true….but, at times we all have the ‘downs’. Remember that he understands this and is right there holding us in his hands. We are elated to have received the card!! It is on the refrigerator along with our 6 grandchildren. Ella, you are so beautiful and precious to us. Tina, please send me your address via email. Lord Bless and guide all three of you in this New year. We hold you close in prayer and thoughts. Love and hugs, Steve and Joan

Heidi Ham` on January 9th, 2012 at 11:27 am #

What a truly amazing message Tina! Thank you so much for sharing your words and your life with us all. Ella looks wonderful…so do the pups! Happy New Year to you and Josh and may many blessings of good health and happiness be upon your household. So happy to hear about the wonderful people in your lives now that can help to care for Ella.

megan on January 9th, 2012 at 11:40 am #

Hi Doodlebug,
I was just checking your page lastnight so I was so happy to see an update!! You look so pretty and happy. I am glad that you have an amazing team around you right now! I miss you give lots of hugs and kisses to mommy and daddy! Love you Doodlebug

Estela M . Williams on January 9th, 2012 at 11:53 am #

Powerful Tina, just powerful. Thank you for being you and continuing to remind all of us of God’s love, grace and plans for us. All God asks from us is to have faith in him! Ella is so blessed to have the best Mommy and Daddy ever — thank you for sharing your “life” with us — we continue to be blessed by the Beautiful and Perfect Miss Ella — she is just like God planned! Love you!

Ellie on January 9th, 2012 at 12:00 pm #

We were so excited to get your christmas card! Glad Ella has been doing well.

Daphne on January 9th, 2012 at 12:12 pm #

To you, your words may be a tiny sharing of what’s in your heart, but to myself and many others, they are words that bring encouragement and sanctification to be more like Christ. Your perseverance and love are building a beautiful crown for you to put on in heaven.

Eve Johnson on January 9th, 2012 at 12:25 pm #

Your family continues to astound and bless. Ella is such a beautiful little girl. I can’t begin to imagine your down days, but I do know God designed Ella for His specific purpose, and He delights in His perfect work.

Christe Mitchell on January 9th, 2012 at 12:28 pm #

Thanks for the update. God Bless you all. Great Pics : ) Continuing to lift you guys up in prayer.

Jan Costas on January 9th, 2012 at 3:36 pm #

I was so pleased to hear of your outing to see the lights. You did better than us.
I’m excited about your February vacation. Your marriage is a priority, and I’m glad this is able to work out.
Praying that Ella will be able to gain some pounds.
Love you guys!

Devon on January 9th, 2012 at 9:19 pm #

So glad to see an update. Glad to see she is feeling better and hope she starts to gain asap! Enjoyed reading your thoughts in this post. Love the pics…her eyes are so beautiful. ((praying for Ella and your family tonight)) Devon

Janel Litzner on January 11th, 2012 at 3:16 pm #

Love to hear that Ella is feeling so well! I think of you guys often and especially on the 6th when she and Elijah shared their 1 year repair surgery!! Praying for continued peace and joy for each day!!!

Tara Hayes on January 12th, 2012 at 6:39 am #

beautiful girl. two days go as I was praying for Ella, I thought “boy I miss my Ella updates” Today, I think “if the delay brings a post filled with so many good reports” I can wait. thanks for sharing. 😉
much love.

Linda Casey on January 12th, 2012 at 4:41 pm #

So glad to hear that Ella is doing great. A lady in my Sunday School class asked me a couple of weeks ago how Ella was doing. I will give my Sunday School class an update. Thanks. Continued prayers.

Eve Johnson on February 20th, 2012 at 12:19 pm #

Thinking of you and praying for you today.

Tara Hayes on February 26th, 2012 at 12:49 am #

I am still praying for Ella to pack on a few lbs! I hope her dietitian.visit weigh in showed some real growth and progress.

Dana Chambers on February 27th, 2012 at 3:38 pm #

Lauren asked about Ella today and requested to visit her website. She says she looks adorable and she is praying for bigger miracles for Ella.

Dave Cantrell on March 13th, 2012 at 1:42 pm #

Josh,

Ella has really grown alot since the last time I visited this site. I’m glad to see she is doing well.

My best to you and your family.

Molly on April 28th, 2012 at 9:59 pm #

Hey Tina, I wanted to reach out and say hi. It was a pleasure to meet you this last weekend at the conference. I will keep your family in my prayers and will bookmark your blog to stay updated on your beautiful Ella. 🙂

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