Because he deserves a post

William Cutler Mitchell...his birth name. Now, what does he actually get called...um, well, his full name when he's in trouble. "Will" if I'm just talking about him to anyone, or most of my friends and church call him. "Bubba" if I'm talking to him or to Ella about him, or if he's identifying himself (don't try to change his mind, to him, his name is Bubba). "Billy" if you ask Joe or Joe's mom Linda (and maybe a few Mitchell's and Cook's out there in Iowa). But if you ask him who his sister is, he knows full well that her name is Ella...and here he is singing her Happy Birthday (or Irthday, because who needs the "b"?)

Some other things about my 2nd born. He's huge. I don't mean fat and chunky, I mean just big. He's 39" tall (1/2 inch taller than Ella) and weighs 34.8 lbs on my scale before breakfast, without clothes...Ella weighs between 31-32 lbs! He also wears 3T clothing (same as E) and has a size 10 shoes (granted, Ella has tiny feet in her 5's or 6's). He's wild, and gets in trouble at school for being rough (he's bigger and older than every other kid in class so that's part of the problem). He loves to climb, slide, run, and pretty much be a boy. He has very few fears...loud noises (think lawn mower or hairdryer) and houseflies (I know, we are trying to work on this one). He eats just about everything, especially if he's in the car or locked into a chair...give him any room and he'd rather be moving. He loves TV and movies, but is just as happy playing at the park, fast food playground or the backyard. He loves "chichen and fries" because that's what he calls Chick-fil-A (guess we eat there too much) and will eat a hot dog for every meal, no bun and plenty of ketchup and mustard. He also LOVES fruit and is getting better at veggies. He loves to play with a train set that Joe's dad has and can actually sit for an hour and play quietly...rarely does anything hold his attention long enough. He also loves to dance...although he MIGHT have gotten his moves from his father. He loves to talk on the phone, although he limits what he says and points a lot, I always feel bad for whomever he's "speaking" to. He can identify pretty much anyone in a picture and remembers a lot of things that we tell him, unless it has to do with behavior. He talks a LOT and says most words pretty well. He drops the first letter of a lot of things, but maybe it's just because I understand him that I think everyone else should be able to as well. He loves to wrestle, thanks to his cousin Abe, but is realizing that he can't attack everyone...Ella doesn't quite fight back so he's be restricted on tackling her. He does LOVE to hug and kiss her and is really good about telling her "sorry" if he's too rough with her (which he often is and she could care less about it). He loves to play with daddy and loves mommy pretty much most of the time. He's a delight and very soon will be a great big brother, or at list this little kid will have to develop some thick skin and a hard head.

May 11th

Last year I wrote a recap of May 11, 2006. I think about that day so often, because not a week goes by that I don't have to recite it for a doctor or explain "what happened" to someone. I have realized that each of us, my family, have their own Cliffnotes for that day. My mom remembers getting the phone call that Ella was failing and that everyone needed to say goodbye, I remember odd details and they change over time. May 10th changed my life, May 11th changed my heart. I never knew such a deep need for someone bigger than myself. I have never prayed so hard with so much faith. I don't believe I had ever cried so hard or been so scared. I don't believe I've ever grown so much in the matter of 48 hours.

Today, May 11, 2010 my daughter had her 4-year-well-baby appointment with our beloved Dr. Nale. Ella was pronounced healthy...isn't that just the gracious work of God?! I mean, no, she isn't "healed" but she's healthy. My baby girl who they thought would die 4-years-ago is healthy today. She's happy. The happiest 4-year-old ever. The girl got four shots today and didn't shed a tear...I think she should get a prize for being so brave. She does have to have a bone density test, but that's just to be on the safe side. Her scoliosis scan from yesterday came back clear. She's a little on the light side in weight, but you wouldn't know it if you tried to carry her...so I'm leaving that one alone. She has increased her head percentile which means that her brain might actually be growing...GREAT news!

She's healthy and she happy and she is a blessing.

Sleeping Angel

Joe goes in every night to check on the kids before he goes to sleep. Sometimes I go in with him and tonight they were both sound asleep so I thought it would be a good chance to watch them at peace.

When watching Ella sleep tonight I wondered...when she dreams, does she dream that she is mobile and talking and "typical"? I do sometimes, in my dreams, realize that she's a typical child in my subconscious, just wondered if it's the same for her. I hope that in her dreams tonight she is chasing butterflies and telling her friends secrets and dancing in the sunshine, and I hope she does all of those things in my dreams tonight too.

I've been asked if I'm ready for the baby to arrive (his name in Jonathan Thomas) and my answer has been very quickly "no" this time around. Not because it's going to be more difficult with three, even though I know it will, but because for now he's safe. He's tucked away somewhere that is designed perfectly for him. I just want him to stay there until he's done cooking and we get to welcome him into our lives.

Four years ago right now we were holding Ella, perfectly healthy and our lives were so simple and easy...4 years from tomorrow morning is when I realized how much prayer I needed in my life on a daily basis.

Ella's Birthdays

I'll write all about my thoughts and feelings this year, but probably not until later in the day or tomorrow...for now, enjoy these pictures of our big girl over the past 4 years!!

Toys R Us Kid

So, how many times do you remember going through the Toys R Us catalog as a child and circling the things that you "just HAD to have" and in our family you wrote your initials on your item so that when our poor parents went to the store they knew what each kid wanted. I miss that catalog. You don't get the same hype from an online store, just doesn't happen. And, has anyone tried to find anything in the actual store...miserable. I've decided the only thing that stinks worse than trying to find Ella a Christmas present (because shopping at a kids toy store from October-January is certifiably nuts) is trying to find her something for her birthday. Not because the stores are crazy, but because I start to feel crazy.

This is the 4th birthday that I don't know what to buy for her. I don't know what she wants, but she has to want SOMETHING, doesn't she? I would print out the entire TRU online store if I thought she would pick something. I would beg the manager to let us come in before opening if I thought that a peaceful store would help her zone in on the one item she can't live without. I'm pretty sure my husband or parents or in-laws would break the bank to buy her anything if she would just say the words "I want_____". Don't ask Will, he wants everything. We go days of trying to teach him to stop staying the phrase "I want____". But from Ella, they would be sweet words.

A lot of my mom-friends of special needs children don't have vocal or mobile kids, but the kids still like (or don't like) a lot of things. Not Ella...you could give her a shoe and the kid is thrilled. Honestly, her speech therapist gave her the option of a glove or pudding and Ella picked the glove and joyfully started chewing on it...funny, but not helpful.

My dad told her that she could have any car she wanted when she turned 16 if she would make it out of the NICU alive...well, that girl decided she wanted a 1961 or 1970 Corvette (even if she can't drive I've offered to take her anywhere she wants to go, as long as we put the convertible top down). I would say she didn't know it at the time, but she wanted that car...and we all wanted her to come home.

Joe offered her a pony if she never had a poopy diaper on his watch...she didn't make it very far on that one, but instead she just gets to ride a horse once a week.

So, I don't know what we are buying her this year. I don't know what she would want or what she would play with or what is best for her. We've bought her sentimental gifts in the past. She has a music box for jewlery, she has a beautifully carved wooden box with the word "hope" on the front, and she has a lot of letters from her dad and grandfather that they write her every year.

What do you think she would want?

IEP

I've realized that acronyms are weird. You sometimes know what they mean, but rarely get all the words and letters lined up. My brother-in-law is in the Army...they use so many abbreviations that I think they can have an entire conversation without saying anything that a civilian can understand. I have decided that having a special needs child is the exact same way, but then throw in medical terminology that you can't even pronounce...SO confusing.

Ella had an IEP today for her PPCD school education.
IEP=Individualized Education Plan: A detailed description of the educational goals, assessment methods, behavioral management plan, and educational performance of a student requiring special education services.
PPCD=Preschool Program for Children with Disabilities

Here are some of the goals that Ella has "mastered" which means that she performs them 70% of the time during observation:

• Identify an object from a choice of two by looking or reaching with visual, verbal and physical cues. (she picks what she wants between two objects by looking at the one that she wants)
• Follow simple 1-step classroom directions with visual, verbal and physical cues. Example:
  "sit up", "come here", "put in", etc.
• Identify 1 target word or object of unit vocabulary by reaching or looking during classroom activities with visual, verbal and physical cues. (they work on different things during the day and Ella answers the questions by looking at her answer either on a board, button, or the actual object)
• Demonstrate purposeful reach to touch a switch to activate a recording or toy, with visual, verbal and physical cues (she can reach to push a button that will activate a toy)
• Shake head "no" or nod head "yes" appropriately to answer a yes/no question with visual, verbal and physical cues (she does "yes" VERY well and we are working on "no"...hard to find things she doesn't like)
• Vocalize to obtain another persons attention during classroom activities, with verbal prompts (she will start talking if someone focuses their attention on someone other than her!)
• Imitate target Consonant + Vowel syllables, with visual, verbal and physical cues (getting her to say one combo "ma" and then another combo "ba" right after each other and switching it up)
• Wave "hi" and "bye" in response to a greeting from a familiar adult, with visual and verbal cues (she says "hi" and will sometimes waves, but we are working on "bye" and consistency)
• Imitate 1 word following a model during classroom activities, with visual and verbal prompts ("Ella"...she working on saying her name when they say it)
• Track presented objects horizontally and vertically with as little head movement as possible (she can do this better when in her chair than sitting alone, she tends to move her head to help with her vision)
• Demonstrate shift of gaze when presented with two objects (to look at each object as they are identified correctly and then fixating on one that she wants)
• Visually attend and fixate on a novel object (like looking at a book while you are reading it to her, she tends to look at the reader)
• Regard familiar face when voice does not compete (just to look at someone familiar even if they aren't talking..."where is mommy" and then finding me without me saying anything)
• Place objects out of reach so that movement toward them objects is attained (works best with her sippy cup because she LOVES it)
• maintain sitting posture in good alignment with feet on floor or footrest in adapted classroom chair with hip prompt only for 15 minute activity (they are working on taking out as much as possible in her chair and making her work more while sitting...they also have her sitting on a bench during story time (video to come)
• develop reach, grasp, and release of toys w/ Left hand w/ verbal prompts (she grasps pretty well, she doesn't like to let go)
• Activate a button or pop-up toy independently with either hand (always better with her left)
• Voluntarily release objects into a container w/ minimal assistance in supported seating position (getting her to put a block into a bin while sitting on a bench with very little support...hard to multi-task with gross and fine motor skills)

We also talked about a lot of her goals for next year, but I'll give you those when I get the official report. It was so great to see that she's made progress and her them talk about her. It's amazing how little these steps seem in a typical child's development, but how important they are in Ella's progress. It will be so fun to compare this in a year from now.

Commitment Sunday

Yesterday, May 2nd, was "Commitment Sunday" in our church. We have attended First Baptist Church Dallas for almost 7 years and have been members since about a week after we got married in October of 2004. We have gotten the opportunity to talk a few time about what our church as meant to us over the years, and especially how our church has loved us since Ella was born. More recently we have had the chance to share with our church how we came to the decision to give "sacrificially" to our new building campaign and the impact that we want the church to have on our children and, prayerfully, our grandchild and their children. We really see our church as somewhere that has withstood history and can embark on the future of our generations.

Sunday was the day. Our church, after months and months of prayer, opened it up to the members of the congregation and they came forward with their commitment cards, pledging what they would give over the next 3 years of the project. This has been emotional for me. I have been encouraged to visualize my children coming to know the Lord in the worship center, growing their faith in the new education building and hopefully getting married in our revived sanctuary (which has been there since 1920, I think). This new campus isn't just for me, but it's for them...and that's been the greatest part for me personally. I know that it's for a bigger purpose of God's glory, but I can't wait to see that manifested in the lives of my children. In thinking all of that it causes me to wonder how this will look for Ella in the years to come. I allow my minds eye to go down the road of "how old will she be when it's all complete?" (she'll be 7...I can't imagine her being 7!), "will she be able to enjoy all of the new amenities?" (yep, they are keeping special needs children in mind when they design the new Education building), "will she learn about Jesus and salvation and His true love for her?" (yes, that is our church's ultimate focus for not only Ella, but all of our kids). I'm excited to get to watch all of the kids enjoy the new facilities, but more to watch them grow IN knowledge in the new buildings.

When I sat in the service yesterday I was excited to just watch the last year of planning and excitement come together. I didn't realize that I would find myself crying, and almost uncontrollably. Sandi Patty came to our church yesterday to sing with the choir and orchestra. I've always thought she was great, and even remember her being one of my very first cassette tapes when I was younger, but I didn't realize that her performance yesterday would break me. As much as I love her voice, it was the woman standing next to her that I couldn't take my eyes off of...her name is Lisa Smith. Lisa has Down Syndrome and while Sandi sang she did the AMAZING sign language for the song. Lisa sang with her whole body. She loved the Lord without opening her mouth and with a body that the world says is handicapped...and she did it BEAUTIFULLY. All I could picture while Lisa praised the Lord was Ella...and what her form of worship would look like. I want her to stand to her feet or fall to her face in praise for who the Lord is and what He has done for her. It still makes me wonder if Ella will ever have the cognitive ability to accept the grace of God and choose wholeheartedly to follow Him.

Then today, as if God knew what I was wondering (and of course He did), I found this blog post, which lead me to read this post and I'm reminded that God's plans for Ella's life have not been, and will probably never be, fully revealed to me. However, I am content to know that He is in control of both her life and her eternal life, as long as I do as He tells me to do as her mother. So, I'll end with a verse that they included in their posts:

"Remember dear brothers and sisters, that few of you were wise in the world's eyes or powerful and wealthy when God called you. Instead, God chose things the world considers foolish in order to shame those who think they are wise. And He chose things that are powerless to shame those who are powerful. God chose things despised by the world, things counted as nothing at all, and used them to bring to nothing what the world considers important. As a result, no one can ever boast in the presence of God." 1 Corinthians 1:26-29 (New Living Translation)