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Tuesday, November 10, 2009

Will the real Slim Shady please stand up?



GUESS WHO IS PULLING UP AND STANDING BY HERSELF???

Yours truly, little Miss Ella Hope Carder. What a big girl! Today she figured it out and has been pulling up on EVERYTHING. We're so proud of her and this just shows us that she really has gotten so much stronger. We didn't know when she would start pulling up because her left arm is still weak and she has a hard time reaching up with it, which pulling up requires you to do. However, even though her range of motion is limited and her arm is weaker than her right, she is able to use it to help pull herself up. Yea Ella! It's so encouraging to see because we still have a long way to go as far as stretching and strengthening her muscles on that side. Time will tell what her range of motion will be in her left arm. Her shoulder deformity was very rare and her shoulder surgery was the first her surgeons had ever performed of it's kind so really none of us know what she'll be able to do or what kind of range she will have. We just know that she has made good progress so far and we're just continuing to pray that the Lord will heal and strengthen her arm and give her full range of motion.

Another thing that has made it harder for Ella to stand on her own is her weak abdominal muscles. If you remember, her ab muscles are not closed because at her omphalocele repair surgery at birth it was such a tight fit getting the organs put back in that they were not able to pull her muscles together. It was just a skin closure so because of this she has a hernia which she will have surgery for to repair in the next several years. Anyway, because of all of that her ab muscles are weak so things like walking, pulling up and other things are harder and often delayed for babies like Ella.

So, can you see why we are SOOO excited that she has reached this milestone?? She is a hard worker and is so cooperative in all of her therapies that she is in which is such a blessing. Please keep praying for her, the prayers are definitely being felt and answered. Keep praying this week that she tolerates her feedings and gains weight. The dietician came today and Ella gained about 2 ounces which is good but we were hoping for a bigger gain. At least she didn't lose so that is a step in the right direction. So this means that we will continue on with our schedule of six feedings a day and try to increase her volume daily. This whole feeding/weight gain thing is very complicated,micro-managed,overwhelming and hard to understand, I know, unless you have a child with feeding issues.

So, please continue to pray for us as we try to figure all of this out with Ella and make decisions that will work for her and our family. We have a lot of great help medically with it all which is a huge blessing but feeding is a very overwhelming and slllloooowwww process. Slow meaning probably for several more years. I'm not trying to be Debbie Downer or appear as if I'm giving up hope, I'm just being realistic. So that's why sometimes it's hard for me to answer when I'm asked "How are feedings going?" or "How's Ella?" I mean, I don't know...she is doing well and we are definitely blessed, but things are not great or near being "normal." It's BETTER, but it's still hard and we have a long way to go. Please know that I love that people care and genuinely want to know how things are going and how to pray so don't take this at all to mean that I feel awkward or annoyed by the questions because I definitely appreciate and want them. I feel immensely blessed by such an amazing support system with friends and family who have and continue to help us so much and I don't take it for granted. You know me, I just can't sugar-coat things so hopefully without making others feel awkward by my response to their questions I try to be as honest as possible without going into great detail that no one really can understand anyway because they're not in my shoes. Does that make any sense? Hope so and sorry if it doesn't. It's just that with a child like Ella who has some special and specific needs you don't see big changes day to day so sometimes I feel like we've gotten nowhere and I'm banging my head against a wall with all of this but the truth is she has made great improvements, it's just baby steps when I want giant leaps. I'm learning to be thankful for baby steps and I just have to remind myself of where we started from. Last year on this day Ella had her G-button surgery and was still in the hospital so I would say we've come a long way wouldn't you? I mean, this past Saturday night at dinner the girl ate 1 1/2 french fries(a girl after my own heart :)), two slices of carrots and part of a mandarin orange slice. Seriously, let's get this child some fries and let 'er go to town! What a difference a year makes. Thank you Lord!

Ella one year ago

Wow, this post is getting a little longer than I had planned. You get me going on this whole feeding and special needs children topic and I could talk for awhile. Get ready because there will be more where that I came from. I am definitely learning A LOT through our struggles with Ella and it has opened my eyes to this world that we are in along with so many other families of children that need extra special care. I don't feel alone in this thanks to our amazing families, friends and support system. I feel different, but not alone. Thank you Lord for being faithful to us! Keep praying, love to all!

15 comments:

Chad said...

That is awesome. Way to go Ella! My entire family is encouraged by you!
Uncle Chad

Ann Reese said...

So exciting! Meg did a little happy dance and said "Eya" when she saw that picture! We're all so happy for her progress! I know the road is long but you truly all have made it so far! Just looking at those pictures of the day she got her g-button reminds me of such progress! You and Rick need to pat yourselves on the back for just a minute or two and tell each other that you are doing a great job--her progress is due to much prayer AND your perseverance in keeping her working on that feeding daily. Seriously, take just a minute to rejoice at the progress and take a deep breath before you go on to the next hurdle. We love you guys and are so proud of you. Reminds me of a verse in Romans--Our sufferings produce perseverance, perseverance, character, and character, hope. And we are all with you hoping for more great news, full range of motion, and "normal" feedings. We're all in this with you for the long haul and will rejoice with the baby steps and giant leaps! So, how are feedings going?

Jodi said...

The verse Ann put from Romans 5 is my absolute FAVORITE (God, are we allowed to have favorites???). We all can use a little (or a lot) more hope, so I guess our sufferings get us there. :) Although, I've always thought you had plenty of character, but whatever. :) :) :)

Anyways, YAY ELLA!!! I certainly know what a HUGE deal it is for her to be pulling and standing! Yippee!!!!! And Ann is right, take a moment or two or a thousand and pat yourselves on the back. Besides the bajillion prayers for her, you are her BIGGEST assets. Amazing! So, GREAT JOB THERE MOMMA!! Know that we love you, are in constant prayer for you all, and look forward to all those baby-step milestones so we can celebrate with you!!! :)

Natalie said...

Not surprised at all at Rock Star Ella...once again surprised by your hip-hop knowledge. Your street cred will soon be off the charts!

Seriously, we are so excited for this milestone. Let the babyproofing continue!!!!

I'm saying a prayer for you, but it must be read in the halting tone of "Meet the Parents"...does that count?
Day by day
Day by day
Oh Dear Lord
Three things I pray
To see thee more clearly
Love thee more dearly
Follow thee more nearly
Day by day...by day...by day

Love ya chica!

Anonymous said...

First of all, yea Ella! You are amazing us all with your progress and your strength.

Second, I can only imagine how mentally and physically exhausting it is to have a chid with special needs. You are amazing, and I appreciate so much that you keep it real on your blog all the time. I went to a children's ministry lecture on special needs children and the main thing the parents all expressed was feeling isolated, sometimes especially at church. Keep teaching and showing us how to be better at taking care of kids and families who need extra help.

And finally, on a much lighter note, I have been watching The Biggest Loser for the first time this year, and loving the white knuckle drama of the weigh in. I got to thinking we should make a tiny, "Biggest Gainer" T-shirt for Ella and you could post a video of her weigh in each week. You'd need to pause the footage about 5 times and zoom in on Rick and Eva's facial expression while we wait for the big number. We're all praying for every little ounce she gains, so that'd be fun. It's not like you're busy with anything else right now so you probably have time to create these little videos for your blog readers every week right?

I know it's goofy, but just imagine it with me. It does make me smile...

Summer

Anonymous said...

I can't wait for your book, _Measuring My Life in Milliliters_ to come out some day. It's going to be great and I hope the blog is part of it. Will you give me a signed copy when you go on Oprah?

Seriously, as always, we're so deeply proud of and prayerful for all of you and committed to being here for every milliliter.

Love you!
Jess

Kelly said...

I know that it's the not the same situation by any means, but after lots of PT, I clearly remember the first time my son pulled up. When you know that it's not something to take for granted and is a lot of hard work for them, it makes you appreciate something so simple as being vertical. :) That is a great and exciting accomplishment!!! Great job to Ella and to you!

Emiley said...

Great job Ella!! What an accomplishment! Amy...you are my hero! Hang in there mama...you are doing an incredible job! I was just thinking what it is going to be like for your girls to look back at your journal of this walk and to know what a true servant heart you had for your family! It does not go unnoticed now and won't in the future! Loved seeing you Saturday!

Specks said...

Was there ever a sweeter face standing up all by herself? Thrilled for you guys and encouraged for what lies ahead. Ella continues to beat all the odds!

And on another note, all I can say is...preach on. Picture me as the wild lady sitting on the front row of the church yelling "amen" while you are preaching. PREACH IT, sister. Love you so much and I was smiling that Ella bella ate 1.5 french fries~ my kind of girl. HUGS, HUGS, HUGS.

Christiana said...

Yeah Ella! and Yeah Amy and Rick and Eva!
Love you guys and think of you often.
Can't wait for our girls to play together again.

Nancy Giurlanda said...

Yay sweet Miss Ella !!!! with that big smile on her face, what a baby doll...awesome news. Just picturing the smiles on your faces watching her pull herself up does my heart good. I know things are not moving as fast as you would like them too and I am praying that Ella's feedings get better and better but seeing each and every hurdle she conquers has to be so rewarding for you and such a reflection on all of your hard work and love you give and being such AMAZING parents. You deserve each and every pat on the back a million times over. I love you all very much and I pray daily for progress in each and every direction. Love that sweet Ella ate 1-1/2 french fries !! haha ice cream and french fries, she is well on her way !! Huge hugs and kisses to all of you, I love you all.

Jodi said...

Girl-
Yes, saw This Is It a couple of weeks ago (my parents were here to babysit, bless them). Cried 3 times. It was amazing, and I have been rocking out to the cd ever since. Reagan now recognizes the music even more...

In "Wanna Be Startin' Somethin", during the "Ma ma se, ma ma sah, ma ma cu sah" chant at the end she sings (in the right rhythm) "I'ma singin' a Michael Jackson song, I'ma singin' a Michael Jackson song." Awesome. :) Only a few friends of mine would appreciate that, thanks for being one of them! Ha!

Anonymous said...

Ames,

So happy to hear about Ella's progress!...slowly, but SURELY, so don't lose sight of that! My coworkers and I follow you guys via the blog on a daily basis...you all have become somewhat of celebrities around here :) Please give everyone hugs & kisses for me!

OH!!...and Ella's 1.5 french fries...were they fat or skinny?? You KNOW that's an important detail!!...don't hold out on me Amy ;)

Love you all!
Rach

LYN said...

We just got home from vacation...had to read your blog first thing. LOVE IT!! And thank you Lord!

LYN said...

Constantly praying for you and yours. Love you guys.....