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Friday, April 16, 2010

Ella

Soooo, I'm gonna cut right to the chase here on this update with Ella. This is big people, big. By the way, this update is a little lengthy, sorry, it's just been so long since I've given an update and there is much to report. Just thought I'd give ya a warning. It's all great news though so you better read it all. :) We'll start with feeding news first. I'm so excited!
We've moved from this...

to this!!!

What.is.up?? Holla! We are cutting back tube feedings like it's our job around here. Now again, concerning this picture...these days we are focused more on calories/weight gain as opposed to tooth decay, we'll worry about cavities later. Anyone else giving their 19 month old Sonic cokes? Anyone? Anyone? We're feeling pretty good about it so it's cool. ANYWAY, back to Ella's feedings. Man, she has come SO far. When I think about it I get a lump in my throat and I almost start to cry. This past week we dropped her last day time tube feeding which we usually give to her during her nap. This means that we are now down to...drum roll please...only two feedings at night! Umm, in case you missed that, that is two my friends, TWO! Do you realize how huge this is??

Let me do a little recap here for you to better explain. At Ella's shoulder surgery this past August she was not really eating anything by mouth at all and was being fed every three hours around the clock, which met she got 8 feedings a day. They were all by feeding tube. Back then she was vomiting multiple times a day and if she did try to eat anything she would gag and throw up more. We started going to feeding therapy twice a week at Our Children's House in Grapevine in September. Since then, we have slowly dropped feeding after feeding as Ella has slowly started taking more food by mouth and gaining weight. Long story short, in the past eight months we have gone from eating hardly anything and using the feeding tube for every feeding to now eating a breakfast, lunch and dinner and only being fed two times in the middle of the night with her feeding tube. I feel the tears welling up again. I stand amazed. The Lord is so good! We have worked so hard to get to this point and we didn't get here alone. Your continued prayers for Ella have been life changing and we feel so blessed to have such incredible prayer warriors, friends, doctors and therapists who are all working so hard and with such compassion and love for her. Thank you!!

We are now only going to feeding therapy once a week and Ella is getting close every week to reaching her goals. Our main goal with feeding right now is volume. She is willing to try pretty much anything you give her, she just doesn't always eat very much of it. So, we are really working on increasing her intake. Also, we are adding a product called Benecalorie which is a very calorie dense, oil-based liquid to EVERYTHING she eats. This stuff is my new best friend, I mean it's going in yogurt, applesauce, on her pizza, in her burritos, everything. It's awesome! So, that is really helping to bump up the calories even if she doesn't eat a whole lot in one meal. Most meals she eats fairly well but we still have to work at encouraging her to eat more and sometimes we have a stand-off with crying and tears but guess what...momma always wins. I have to with this feeding thing, it's just the way it goes. Most meals though are very pleasant, no vomiting at the table and she acts hungry and eats pretty well. It's really incredible and I don't take a single bite that she takes for granted, I'm so thankful that she is eating. She now will even walk over to her high chair and say "Eat, eat." What? Is this the same child that just 8 months ago would not eat anything? Amazing. Thank you Lord!

Last thing about feeding and then we'll move on. We are so close to hopefully not needing a feeding tube anymore. Like I said, she only gets fed with her tube two times at night right now. Please be praying that she continues to eat well and to gain weight. She is up to 19 pounds now and with dropping a feeding last week she lost 2 ounces which is not bad at all in my opinion. This is usually her pattern when we drop a feed, she'll lose the first week, maintain her weight the next week and then it will slowly go up from there. So, please keep praying for her to eat well and gain weight as we are working towards dropping these last two feedings. My prayer is that by her 2nd birthday in August she will be feeding tube free! We're that close folks.

Okay, next item on the Ella agenda, her shoulder. We went back to Scottish Rite at the end of March for her six month check-up. Since her surgery in August she just took off and responded very well to therapy. For the past several months though we had felt like Ella had kind of hit a wall as far as range of motion goes. She could get her arm up to about 70-75 degrees and that was about it. With help, she could get it to 90 but that starts to push it and she starts compensating by arching her back. The picture below is a good visual for you on what her range is.

At her appointment in March they did some x-rays and answered alot of our questions and confirmed some things about Ella's shoulder. Basically, Ella's shoulder blade on her left side is attached to her spine which is the main problem, so to speak. Things with her shoulder are very complicated so I won't go into every detail because there's alot but I'll try to give a little explanation. I don't know anything about muscles and bones and what they should be attached to but your shoulder blades are not and should not be attached to your spine. So, this is obviously the main contributing factor to her limited range of motion because she can only lift her arm so high and then it just stops because it can't go any further because it's attached. Her arm is also weaker on her left side due to the reattaching of muscles they had to do at her surgery so the strength is just not quite there yet to get her arm up to 90 on her own. She has great use of her arm as long as it is around waist level but anything above that is a bit of a struggle. She is working so hard though and has come a LONG way. We're so proud of her. I remember after she was born, in the NICU and when we brought her home from the hospital she wasn't even using her arm. It's like she didn't even know it was there. We would have to help her use it and remind her that she had a left arm because it just kind of hung at her side.

I think about that a lot and I have to sometimes make myself think about the positives when I get down about the limitations Ella has with her arm. I can start to worry about things and what the future will be like for her but I feel like I've come a long way in my thinking and what I'm thankful for. I am so thankful that Ella has two beautiful, functional arms. Yes, there are limitations and yes things are and look different on her left side as opposed to her right but she has two beautiful arms. I thank God for that all the time and for the expertise and wisdom that he gave to her surgeons to repair her deformity and give her a chance to thrive in a world that is so cruel to those who look different. God has blessed her so much.

So what does the future hold? Well, basically the range of motion that Ella has now is what she will have. So in therapy we're working on strengthening now instead of range. The surgeons alluded that surgery in the future is a possibility as far as cutting her shoulder blade away from her spine in hopes of giving her more range. So, this does give us hope that more can be done. I don't know though what future means, if that means when she is 8 or 18. I do know that nothing will be done any time soon because she is still so small and they don't want to do anything that will risk impairing the function she does have in her arm. So for many more years the range she has now is going to be what she's got. I'm okay with this now but at the time it was hard to hear. There is much hope though that more can be done. Also, in additon to all of that Ella also has some abnormal vertebra in her cervical spine (which is at the top of your spine) that they want to keep close tabs on. It's all related to her shoulder but some of the vertebra are malformed and fused together so they want to look more closely at that to make sure if there is something we need to do that we don't miss a window. We'll go back to Scottish Rite in June to meet with a spinal surgeon to look more closely at things so we may have more info then.

I don't have any new updates on things with her tummy. You can see again in the picture above how her tummy bulges out because of her hernia. I don't know when she will have surgery to repair that, more than likely it will be when she is 3 or 4. We haven't been back to her tummy surgeon recently but that's the time frame he gave then. That surgery would involve pulling Ella's abdominal muscles together to achieve full muscle closure instead of just the skin closure she has now, cleaning up her scars and hopefully creating her a cute little belly button. Oh did I mention that before? Yeah, all babies born with abdominal wall defects like Ella do not have belly buttons and there is a much more scientific explanation for why but I'm not your girl for that. Who knew? I mean, who needs a belly button anyway right?

For now, there are no surgeries in the immediate future so we're just enjoying watching Ella walk and talk and we're cherishing seeing her sweet personality blossom. We don't take any of it for granted. There are a lot of unknowns out there still and there will be more surgeries to come but we are just taking it one day at a time and thanking God for brighter days.


Thank you for your continued prayers for our family and specifically for Ella. If you made it through this I'm impressed, but didn't I say there was good news to report? Told you. Thanks for loving us and keep praying for Miss Ella!

19 comments:

Ashley said...

Oh AMy! Thank you for the update! Sweet Ella is a champ and so is her momma! Amazing progress.

Continued prayers for your sweet family. Love you, girl

Brooks Inc. said...

Amy- I loved reading every word...I so love Ella and your entire family! The picture of her in the heels made my heart smile.I am so thankful for how far the Lord has brought her...and I am eager to pray and watch as He continues to reveal Himself in Ella! Blessings to you tonight!

jody said...

What a precious girl...just amazing. Amy, thanks for sharing all of that; I, too, read every word and feel so thankful that I got to read the way God has blessed your family. Come see us again and I'll take Ella to the zoo, too! ha! love y'all...

Shelly said...

Rejoicing with you tonight!! What a sweet, amazing, powerful, wonderful, good, faithful, GOD we have!! I believe He will continue to do above and beyond all we could ask for or imagine with your precious Ella! Continuing prayers... love you guys and really miss you!!

holly said...

Hey Ames!

I loved reading every word of this post. I don't think I could be prouder of Ella. She is a true miracle that you and Rick have worked so hard to help. I truly thank God for her and continue to pray that everything will be better than you can hope or imagine for Ella. Your post cut me to the heart and I can't wait to talk more about all of this with you. You are doing such a great job and I am so proud of you.

Nancy Giurlanda said...

yeah Sweet Ella !!! and walking in heels, what a baby doll she is. What a wonderful post honey, full of such good news I loved reading every word through my tears and all !! Kiss Eva and Ella for me, I love you all !!

Natalie said...

Hey, friend, let the tears of gladness roll! You and Rick ARE God's glory right now! Not only did the Lord know each of Ella's days before the moment she was created, He knew that you and Rick would be just the parents for her. It is a testimony to see your family support each other. I always love to see the pics of Eva "driving" the feeding tube pole. Sisters always seem to have a special bond (you know that), but theirs will be so sweet. Celebrating with you!

Specks said...

Sweet Ella Bella~ you are SUCH a rock star drinking that Sonic drink like a pro....we are kindred spirits and once I get myself to TX I will take you to get as many Sonic drinks as you want :)! Amy, I cried and cried tears of happiness while reading this. The feeding leaps she has made are astonishing~ and I can only imagine how MUCH work it has taken to get her to where she is. I am so thankful that God has given you all the strength to do all that you have/are doing. He is so good and Ella's miraculous story is not over! Love you all soooo much.

Calista said...

I'm so happy for you guys and especially for Ella. What a story she has and you are so sweet to share it with us. God has such wonderful plans for her! I love you guys and can't wait to celebrate the day she is free of tubes. We'll have to have a big party for her. Love you sweet friend.

Jamie Ridgell said...

Oh Amy, I am so happy after reading that post. So much joy, so many positive and exciting things to report, so much light in what was a dark tunnel for a while. I am so proud of her and for you and Rick who have given her the most selfless, around the clock care for 19 months. You are an amazing mom and I love you so much! I cannot wait to see the plans the Lord has for your sweet Ella.

Kendra said...

Man, I loved reading this! I haven't had a chance to see you and ask how she's been doing lately (and didn't think it was any of my business to go pull her chart and take a peek at the notes! he!). God is so sweet to bless us with these beautiful babies - we all have our "deformities", and I'm thankful He is giving you clear vision of how He has blessed you with little Ella. Hope to see you soon, friend -

Christiana said...

Wow! Besides all the wonderful things that are going on with Ella, you have become a bit of a medical jargon expert. I'm so impressed!
And I'm happy that your girls are growing and doing well. Love you guys

Jodi said...

Sweet holy guacamole, that girl is AMAZING!!!! I teared up right along with you about her feedings and her arm.... she is a TROOPER and has come so far!! Amazing!!! To GOD Be The Glory!!! It is such an honor to watch her grow, pray for her, praise with you for milestones, laugh with you through the good and not-so-good.... all things I am so thankful for! Love y'all!!!!!!!!!!!!!!!!! Keep up the good work!!

LYN said...

What blessed news. Your blog has blessed me so much as I see how God has matured you and Rick in the faith.
Ella is indeed His child!

Courtney said...

This whole post makes me so, so, so, very happy. Praise God! I am just full of thanksgiving to Him for this work in baby Ella and the even better months ahead for you! I think of that day she was born and just rejoice with you in her little life and in all that has happened! Love you all!

Judy said...

Great post! But, you forgot to mention how much like her grandfather she is. :)

Anonymous said...

The girls are soooo beautiful. It made me so sad that I did not get to come see them as planned. I am going to try again in June. Love you all very much! Vanessa

Emiley said...

How did I miss this post until now?? Oh Amy....I am rejoicing with you at all the good news! Sweet Ella has come SO far. You and Rick are amazing parents and are such a testimony to to us all! I can't wait to continue to watch God's perfect plan for her!

Walker may be starting the benecal soon! Glad to know it has worked for Ella! :)

Cox Family said...

Amy,

Your girls are both so beautiful! I loved the picture of the Sonic drink, LOVED IT! You do what you have to do! Ella has great taste! I was so encouraged by this post, so many blessings! Thanks for all your encouraging posts on my blog too. It means a lot. We can get through this! Love ya, Kam