The Mitchells

Doctor #3, please come forward

2012-01-24T22:39:00.002-06:00

Today was our 2nd Second Opinion. So, our 3rd neurologist to "interview" in 5.5 years. We've had the same neurologist since birth, but wanted to venture out and see if there were some other brain-guys out there that had other opinions…or at least better communication skills. (Don't get me wrong, I actually really LIKE our original neurologist, but we just never felt like we knew exactly what was going on or why he was doing anything. It's actually really sad and hard for me to let go of any doctor that I like…that's a big deal in the world of constant medical care.) So, today was Children's Medical Center (the Plano office) to see what they had to say. I need to take a moment and say that this was the HARDEST office to get into. In fact, dear family friends worked their magic to get us expedited, and it still took (what seemed like) forever. So, we meet with the doctor and he had a totally different approach. (Joe is wonderful and has been taking off work to do all of this with me…pretty sure we are going to burn through all of his vacation the first half of this year just for medical appointments…still a lot to do in the next few months!) As you can see I took all of my notes and reports and labs and more notes (these are just her neurological files…or things that relate to neuro, the girl needs an officeassistant! Luckily, we have JoBeth!) Dr. K lets us tell him the whole history and then reads some reports and gives us his take. He's very well spoken and explains things well. With each doctor we are learning more and more as they each have a different style and way of explaining…actually very helpful. After a lot of discussion on what we've seen and done already, he suggests that we go the route of the Ketogenic Diet, which has been known to slow down or stop the advance of seizures. We've heard about the diet before, but never gone into as much detail as we did today. We will meet with a nutrionist at Children's who specializes in the diet for children, andwill answer all of our concerns and questions. We aren't even sure how it will work for Ella since she has an odd eating pattern and can't chew and consume her food like a typical person. Then we will have a very extensive blood test done (complete with metabolic testing) to make sure that her body is capable and safe to be put through ketosis. It's really hard on a lot of the body and is even started in the hospital for 3-4 days before you can go home on the regimen. Then there are once a week appointments, which then get further apart, but with daily monitoring and testing. This can go on for 2-3 years, or longer, if the treatment works.

So….that's one option. We still have the option from Cook Children's to do the testing and check to see if we are a candidate for epilepsy surgery.

We have decided to check into both routes. We will begin the education and testing for the diet to see if it's something we can even do for her. Then in March (Spring Break), we will check into Cook Children's for a 4-day EEG and PET/MRI scans to see what exactly is going on with her brain when the seizures happen. We feel like doing both is our best way to collect all the information we need to make the best decision. If she qualifies for the diet then we will most likely go that direction first and then follow up with looking into surgery if the diet doesn't seem to be curbing the seizures.

Currently we haven't had a full seizure since last Thursday, 5 days, and we'd like to go back to only expecting 1 every 4-6 weeks. Then we'll have some time to make some good, educated, decisions.

Thank you for all your prayers!!

Seizures, and a new Doctor

2012-01-16T21:08:00.003-06:00

So, I quit writing on the blog because it was exhausting. So much emotion to write out what I was already living every day. I'm not sure I can write it out anymore, but since we've enlarged the Seizure chapter of our lives, I think it's easiest to write it all here, rather than try to piece it together on Facebook or over phone calls. As you may know, Ella has had seizures since just before her 3rd birthday. We have been managing them with medications, but they have started to get out of control. In 2009 she had 3 seizures, that we attributed to infections and just thought that whenever she would get sick she would have them. In 2010 we realized that they could happen without a fever or infection…and her meds increased. In 2011 we started off with an additional med…and another spike in seizure activity. She was averaging once a month…until December. Between 12/12/11-1/11/12 (4 weeks) she had 6 seizures. We have had the same neurologist since NICU and have decide to go outside the Medical City offices to find an actual Epileptologist (specializes in epilepsy, instead of just neurology). We found an amazing doctor at Cook Children's Hospital…yeah, we have to pass Medical City and Children's Medical to GET to Cook's, but it was the first place we could get in and the doctor was so wonderful. Here are some of the points from the appointment today (these are going to be scattered and may not be in sequence…but here they are):

her seizures will most likely be lifelong
he would like to switch us off of the 3 current medications (Trileptal, Keppra, and Vimpat) she takes and put her on only one (Clobazam/Ofni)
Ella may be a candidate for surgery (a brain surgery to remove the parts of her brain where the seizure originate)
the actual part of her brain where the seizures start is between the damaged/dead brain tissue and the healthy tissue…don't ask me what it's called because I can't repeat it…started with a "g"…I'll research it
He said her seizures are more than likely a result of the original brain damage caused by her meningitis at birth…it's amazing how much the illness at 12 hours old has effected every aspect of our lives.
We were pleased that he seemed surprised that the seizures took so long to surface after the NICU…we were given a gift that he dubbed a "honeymoon period" that we didn't even know was a gift of a seizure-free period of life. (find blessings in small things)
there is no plan to actually CURE her epilepsy, the plan is always to manage the seizures
Dr. Malik thinks that she might be having small seizures during the day that we aren't aware of…but testing will confirm this and it's not something we can deal with till we have the test results
The plan is to do a 3-5 day EEG (yeah, in FW…this is one of the most exhausting things for my brain right now), a PET-scan, and some other scans…more as he sees needed. They will have her off all of her meds so a seizure will most likely happen, which we need to see exactly what her brain does. Out of the 5-10 EEGs she has had in the last 5.5 years, I think this one might actually tell us something! (I may need my own brain doctor after being in a hospital for that long with her hooked up to cords…but I can't worry about tomorrow)
There is also the option of some seizure diets, but we'll get there after the tests as well…if surgery doesn't look like the best option.
He believes that the meds are lessening the intensity of the seizures, but the concern is that they are ramping up in number and frequency.
I'm most excited about going from 3 meds to 1…they don't prevent the episodes, but decreasing the intensity would be nice.

I think that's all I can think of at the moment. I'll update you as we find out more. I guess I'm back to blogging…we'll see. Please feel free to ask questions…or just help us think of more questions that we haven't asked yet!!

A Few Updated Pictures

2012-01-16T20:37:00.005-06:00

Ella has been doing great in Kindergarten this year. We are so proud of her and know that she has lovedgoing full days. We started her in a public school, but at the Christmas break switched her to a private school, Chase's Place and have LOVED it so far.

Will has shocked us by his absorption of

everything. He learns VERY quickly and loves to know about everything. He can count to 100, knows all of his letters and what they sound like and what begins with them. Questions are of no shortage with our giant 3-year-old. When he turns 4 in a few weeks we'll get to find out exactly where he is on the charts. He thinks he's a great comic and tries to do anything to make us laugh…which of course, makes us laugh.

Jonathan is already 17-months-old and tries to do EVERYTHING his older brother does. Fortunately he has a very hard head and a high tolerance for pain…so he just bounces around happily behind Will. He is by far our most active, because there is always someone to show him what he could do if he was just a little bigger. He loves Ella. Her name was his first word and he always looks for her and announces her presence. If you ask him to kiss or hug her he never denies her some love…she's the only one he consistently loves on. It's heart warming. He may be quick on the physical development, but he's slow to speak. Besides "Ella", "no", "bubba" (Will), "dada" and "papa"…he's slow to say much else. I'm guessing he'll pick up on more as soon as he slows down enough to care.

My Beautiful Little Ella,

2011-05-13T12:24:00.003-06:00

You are JOY. When someone tries to define the word they can see your smiling face. Your daddy and I believe it’s because, in those first few days of your life, you got to sit in the lap of Jesus and let him hold you while we couldn’t. I believe that you have a special angel who walks you through life and God has allowed you a perspective that only He can give. The rest of us see so much bad in this world, but not you my little girl, you only see the happy things. I thought of this today when you were getting a shot (ironically a meningitis vaccine) and you only flinched. A few hours earlier Jonathan got shots and he cried and carried on, but not you, you are strong in the face of anything. We’ve heard it said that so little can affect you after all that you have already been through in your 5 short years, but either way, it is a blessing. I often read about special needs children who can’t find comfort, and I’m so grateful for the unending joy that you have every day…it’s often you who will get me through the rough times, instead of me helping you. Well, maybe we help each other. You are beautiful, yes on the inside, but that shines right through to your outside. People often say that you resemble me as a child, so maybe I was cute too, but there is something so special about you to everyone you meet. I hear the phrases “look at those curls!”, “you have the most beautiful eyes”, and “wow, you are just so pretty” on a daily basis. Sometimes it is funny how many people will stop us and comment on you, but we know that it’s God shining through you. It’s funny that your head actually measures very small (they call it microcephaly) but no one would know for the head full of beautiful curls on your head…see, God really does take care of the little things. You challenge me. I have never looked at my faith the same since the day you were born. It’s funny, but I have often felt that I don’t deserve you. That someone could have done better or would be more equipped to handle all of the challenges, but then I realize that God made me so specifically to be your mother. Oh Ella, had I known that I would get a gift like you it could have changed who I was in life, but God knew all of this and here we are…you and me. It’s not easy. Most days are just our “normal” but there is at least a few times in a week that I realize my life is so different from so many people around me. My life consists of the words: therapy, brain development, seizures, wheelchair, handicapped accessible, aspiration, and all of the terminology that I never knew I never wanted to know…proprioceptive…and I say those words a lot. I have been asked at least once or twice if I’m a nurse because of the lingo that I can speak when talking about you, but I just laugh, since I barely went to college. You are a gift. A true gift for more reasons than I can list, because I think I don’t even know most of the reasons yet. You have caused me to admire and love your father more than I thought possible. Do you know how much that man loves you? He has prayed for you without ceasing and he believes in you (he also never gets mad at you or disciplines you, even when you are totally misbehaving!) You will make your brothers stop and think about everything in a different light than their friends, and I hope that they are better men for being your brothers. Mostly you are just love. You make my ability to love increase in ways I didn’t think were possible. You have the knack for causing random people to fall in love with you without saying a word. You are my perfection in this imperfect and sinful world. Oh, you have a sin nature; don’t let anyone tell you otherwise. We do pray that one day you will come to know who God is in your life here on Earth and that you will have the realization that you are a sinner, in need of a Savior. That you will know how important the life, and death, of Jesus were for all of us…and that you will accept His free gift. We want so much for you sweet child. For now, we will enjoy every day that God has given us as your parents, and pray that we do the very best that God has called us to do.

My Sweet Jonathan,

2011-05-11T22:05:00.000-06:00

You are my baby, and for now, you are my last. You are a joy and your smiles brighten even the middle of the night. I have loved trying to figure you out and try to get to know you better. I remember being pregnant with you and being so scared not to be able to love you as much as I thought I should...it's amazing how God just makes our hearts bigger. You are already so much of a challenge...you have mastered crawling and cruising and now you are trying to stand on your own...I'm afraid it won't be long before you are walking, and then you are no longer a baby. 9 months have flown by. I can remember every bit of your birth and how much I already loved you when I saw you. You had the greatest pouty lips and a sweet cry...and you were mine. I have loved snuggling you and learning how to make you laugh. You have a GREAT laugh. You seem serious a lot of the time, like your brother was, but when you think something is funny you really let it show. I look forward to getting to know you better and seeing what kind of a man God has created you to be. You were a perfect way to wrap up our babies.

My Dearest William,

2011-05-11T15:22:00.000-06:00

You are my buddy. We go almost everywhere together and have our routine down during the week. Speaking of routines, you hate it when one is changed. You like to go the same way to all of your familiar places and you like it when everything is where it should be...except your toys. You are so adventurous. I love to watch your excitement with anything new. One thing you really hate is loud noises. You've never like lawn equipment, anything being blown up or anyone to talks or laughs too loud. You seem to hear everything, except us calling your name. Most people would say that you are a good boy, and you are, but you have a tendency to want to do things your way and in your time. Daddy and I work very hard at teaching you why you need to obey and what role God plays in teaching us obedience and submission. You learn most things very quickly, but I think this one may take a while. We pray that you learn the easy way and not the hard way. You have loved learning who God is already. You love to read the bible, you love the stories, and you have even memorized some scripture. Daddy has taught you John 3:16 and Matthew 5:8...and he's working on a new one, he wants to make sure that you hide God's word in your heart, even at your age...so that you will always know truth. I pray that you grow to be a man like your father. May you be gentle and kind, giving and a good steward with your time and resources...may you love people, but know that God and your family come first and second. You are so curious. You ask a MILLION questions. Even your teachers at school and church notice that you are smart and you want to know everything, about everything, and why! You are a joy for me. You are so much like our first child because you are getting to do so much first for us. We love watching you grow up to be a young boy. We pray that you will be a leader for Ella and Jonathan, may you always love them and take care of them. We pray that you and Jonathan will be close friends and always be able to count on each other. May you always cherish Ella and learn from the life that God designed for her. You are such a wonderful 3-year-old and I look forward to watching you develop into a wonderful young man.

Mother's Day

2011-05-08T22:06:00.004-06:00

Mother's Day has been so special since my very first one. I remember a friend telling me that it didn't count unless I had already given birth to Ella, but I disagree. Anyone is a mother who has given birth to a child, adopted a child, lost a child or been a mother-figure to anyone along the way. It's not the child that makes you a mother, it's the heart of the woman. My first Mother's Day Ella was only 4 days old and had just spent her 3rd night in the NICU. Re-reading my posts from that day and she had gone from "critical" to "guarded"...oh, those emotions. A child I was afraid to love too deeply, for fear she would be gone at any moment. I hadn't even had a chance to hold her long enough to even know her...I was a mother, even if I couldn't touch or talk to my child. Now I'm a mother of three sweet and very different children. Ella, well, she's just Ella. I don't know how to put into words what being her mother has meant to me. She has taught me more about myself, Joe and my loving Savior that I ever thought one little person, who doesn't speak, could do. She's an earthly angel. Sent to bring so much joy and hope to my heart. It's a challenge to know what to do to be the best mother I can be for her, it's not easy and I'll never try to lessen what we go through, but I don't know any different, and for that I thank my Lord because He was gracious when He gave me her first. Will, oh my goodness I had no idea that a "healthy" and "typical" child could be SO much work!! I have often said that Ella is my easy kid...and Will makes this very obvious. There are many challenges to raising a special needs child, but to any mother raising a very typical boy...the challenges never stop, or slow down, or freeze, or obey, or just sit quietly for one minute so mommy can think...and he's pure love. He loves to hug and cuddle and tell me how much he loves me. God knew that following Ella I would need someone who would talk to me (and boy does this kid talk) and give me all of the things that my heart missed with Ella...he gives me so much verbal input...enough for both of them! Adding Jonathan has made us very complete as a family. He's mild mannered like Ella, talks a fair amount already (no real words yet, but he's trying to learn from his big brother) and working hard to keep up with Ella and Will by crawling everywhere and doing everything they do. He's active, but he's also fine to just relax...he's my baby and he always will be...and for that I'm grateful. He's a happy baby. Will adores him and has never asked for us to take him back. He wants to be the first to go in and talk to Jonathan when he wakes up and Joe and I have prayed consistently that they will be friends to each other. We know that God provided a buddy for Will through Jonathan, and we will be excited to watch them grow in knowledge of God together. They are my children. They will stretch me and challenge me in ways I can't even imagine yet, but wouldn't trade any of the rough days for not being a mommy. I don't think I ever realized in my early 20's that I was created for a job so perfectly. I have made a lot of mistakes in life, but my children prove to me that we have a loving God who will still grant us small miracles as we grow to help us grow even more.

Getting Stronger

2011-05-04T15:57:00.002-06:00

Ella has been working with her new Physical Therapist to get stronger. They have been doing a lot of sitting for long times and lately they have been standing. Ella is making a lot of steady progress...we have had so many great therapists over the years and have been so blessed by the people who have loved on Ella and loved helping her progress.

Good News Cruise

2011-05-04T11:04:00.004-06:00

I'm so thankful that Ella has gotten to participate in Children's Choir this year. It's hard to figure out where she should be "age-appropriate" and when it's best for her to be in a room with other special needs kids of different ages and abilities. Brandi Bassett has taken on the responsibility of taking care of Ella during choir and evening holding her during the performances...here are some pictures of both Ella and Will in "The Good News Cruise" from Sunday night.

Tea for Two...or more

2011-05-04T10:45:00.008-06:00

SarahBeth has become one of Ella's closest friends and she wanted to come over and have a tea party...who am I to argue with that...so a teaparty was had on Monday and the boys tried to crash, but it was a success either way!

Is this thing on?!

2011-05-01T11:57:00.004-06:00

I know...I can't keep up...I'm not even going to try to do this blog anymore, mostly so I don't feel guilty about NOT doing it. However, I think I'll give it a shot for the next 10 days and try to update and close out what's going on in our lives.

Why 10 days you ask? Well, baby girl...now BIG GIRL, Ella turns 5-years-old in just 10 days. I know, I'm with you...5?!!? Sounds crazy that we started this blog to keep family in the loop on our first pregnancy...and God knew I would need an outlet to talk about her. So, I'm going to update on all of us for the next few days and then wrap this all up on the celebration of Ella's birth.

For tonight, we are headed to watch Ella and Will perform in a church musical (pics to come) and Jonathan is staying home (with our beloved Kristie) since he has strep throat/rash.

Stay tuned as we end 5 years of blogging!

Christmas Concert

2011-02-13T14:42:00.003-06:00

Ella and Will performed in a Christmas Concert at church...here are some of the pictures.

Christmas

2011-02-10T15:43:00.006-06:00

...and mommy got a new camera, enjoy the shots from Christmas day.

Real life babydoll

2011-02-10T15:35:00.002-06:00

Makenna Paige loves her baby cousin Jonathan...they went on a shopping date to Target (where the Roughton women hang out!).

4 Months

2010-12-20T10:00:00.004-06:00

Okay...so I'm a little late posting. As rarely as I post you should be happy this made it on here at all.

Here are the 4 months stats for the kiddos.

Coming to the end...

2010-12-16T12:28:00.009-06:00

As 2010 is wrapping up we can start to look back over the year and see that it's been a year of big changes around here.

We found out we were pregnant with Jonathan just before the year began. And were a little shocked by the timing, but have been so blessed by our sweet baby boy.

We started off the year on a cruise with some of our dearest friends. After a large amount of scripture memory we went to 3 ports and spent a week, including New Years, with 13 couples.

Ella had a year of development and seizures...we've clocked 12 this year and have spent a lot of time at Medical City Dallas Hospital. She can walk with assistance...if she feels like it. We've learned that she can be very obstinate. She deals with everything life hands her with an amount of joy that keeps all of us focused on God as He teaches us through her.

Both of my grandparents (my dad's parents) passed away this year. My grandfather passed in the Spring and my grandmother this Fall. We had a great memorial service for them that all of the Roughton's got to attend. (Picture of my grandparents with Ella and then all of us at the service)

Will has probably changed the most. He is amazing. It's like being a first-time parent, even though he's our middle kid, and it's a blast. He talks non-stop, remembers everything and weird details, he keeps us laughing and loves his brother and sister to no end. He can say all of his letter, numbers (he thinks he can count to 100, but he's only good to about 20), he can spell his name and has found a true love of reading books. He loves to dance, loves to watch movies and can tell you all about the bible and is excited to celebrate the birthday of Baby Jesus. He has become my buddy and it's fun to take him places. He does tend to "love" everything and say that things are his "favorites" even if he doesn't know what they are..again, we laugh a lot. He has passed Ella in size...he's 37 lbs, 42" and wears a size 12 shoe...E is 34 lbs, 39" and wears a size 8 shoe. He could usually pass for a 4-year-old till they hear him talking. We notice that everyone expects more of him because of his size, and he seems fine with that expectation. (The kids in 2009 and then Christmas 2010)

Joe and I have grown closer and more in love for another year. We celebrated 6 years of marriage in October (7 years together in November) and have realized more and more that we were created to compliment each other. We are VERY different, but it works so great. Joe is the greatest husband and father. He spends all of his free time with us and gives me plenty of time away from the house and watches all THREE kids without a single complaint...amazing. God has blessed us so much and our challenges have strengthened us more than we thought possible.

Some of my closest friends, as well as my mom and sister, all moved from Dallas this year.

It's been a big year of changes...I'm hoping for a really boring 2011!!

The Kiddos

2010-12-16T12:21:00.003-06:00

I've been putting together a comparison each month of the kids. It's fun to try and decide who looks more like whom...but I think it's obvious that they are related!

2 Months

3 Months

4 Months

Saturday Seizure

2010-11-08T16:40:00.003-06:00

Yep, again.

Saturday night, November 6th, Ella went to bed as she normally does...happy and in a good mood at around 8:30pm. Joe and I started shutting down the house and then he went to feed Jonathan and I went to bed (we alternate feedings so I had the overnight shift). As I got in bed a little before 11pm I heard a noise, I totally thought it was a dog far away because it just sounded like a faint sound over and over again (barking dogs at night drive us NUTS). I decided to sit up and see if it was coming from one of the monitors in our room (one for Ella and one for Jonathan...Will we can hear screaming from anywhere in the house). As I got oriented I realized it was coming from Ella's and then suddenly realized that, although it could be her kicking her bed in a rhythm (totally normal), I needed to check it out. I found her seizing in her bed, left the room to say "Joe, seizure" and went back to get her. Ella's seizures are not pretty. They are violent and scary and messy. She had vomited and her body seemed to be convulsing more than normal...and normal is pretty bad. We have our system down so we administered her Diastat (rectal seizure meds) and checked the clock. If the meds take longer than 5 mins to stop the seizure then we call 911...the seizure lasted 10, that we watched. Yes, we sit there and watch her, pray over her, sing her songs and tell her how much we love her, how strong she is, and that it will soon be over...it's a long 5 minutes. We can't hold her or try to make the convulsions stop, we just watch and wait. By the time the paramedics arrived they had slowed down considerably, but she was not "back" yet. I later learned that this period after the seizure is the Postictal state...as they said the word about 50 times that night. So, the paramedics didn't even get vitals at the house, they just loaded her up on a stretcher and we got in the ambulance and headed for Medical City...Joe was following shortly as soon as his mom arrived to take care of the boys.

Let me take a minute here to say a few blessings that have already occured up to this point in the night:

I had Ella's monitor on and heard her...usually if I go to bed before Joe I turn the monitors off so that I can fall asleep and he turns them on when he comes to bed. All of Ella's seizures (up to this point) have happened early in the morning so I've never considered one to happen while we're still awake.
Through all of the firemen and paramedics being in the house (probably 6 or 7) neither of the boys woke up or made a sound. God knew that we needed to be able to focus all of our attention on Ella and the boys slept soundly at this time.
Joe's mom lives 20 mins away and has come to our house for almost every seizure so that we can both be up at the hospital...we work much better as a team and a unit.

So...we head to the hospital. I'm with Ella and feeling pretty..."seizure as usual" until I realize that she's breathing really off and isn't acting her normal "post-seizure" self. Within minutes she's vomiting...has NEVER happened with a seizure before this time. It was so strong and forceful...and then the room erupted. They weren't sure she was protecting her airways so they called in a team of doctors and support personnel to possibly intubate her...I was overwhelmed at the number of people who were on my small child. One guy looking down her throat, people on either arm starting lines, people getting supplies ready, and a chest x-ray machine was wheeled in...and Joe wasn't there yet, I literally thought I was going to pass out or break down crying. They decided not to tube her because they found just enough gag reflex to believe that she wouldn't aspirate. In walks Joe, and boy did I need him. They put oxygen on her, and waited for her breathing to regulate and for all of the labs to come back. We did a urine sample (poor child has been cathed so many times!) and we waited...and waited.

More of God's love for us:

4. A very dear and wonderful friend of ours, Catherine Couch, went to our house to stay with Jonathan. This was so special because he's still at the stage where he needs to each at least once during the night and then again early morning so it was amazing that we had someone take care of that so that my Mother-in-law didn't have to.

We waited and watched as the one o'clock hour came and went...twice (ah, daylight savings). By about 2am (5 hours after the seizure started) we got word that we would be moving to a Pediatric room and by 3am we were settled in and ready for a couple hours of sleep. Sleep. Our room had two beds, which was actually perfect. Joe slept on one bed and I slept with Ella. Ella in a hospital bed is dangerous. She can move around and get around, but has NO concept of falling, getting tangled in cords, or hurting herself...so someone had to be with her at all times, no exceptions. Sleeping in a hospital bed is never comfy, add in a 4-year-old, wires and IV lines, beeping monitors and pumps, and someone coming in every 4 hours to check vitals...I got about 3 hours of sleep that night. Sunday was long. We woke up and realized we didn't know any more than we did a few hours before. I headed home for a couple of hours to hug the boys and check on my mother-in-law. I got a chance to watch our 9:15am service at church with Josh Hamilton as the guest and loved that I got to catch it.

God loves me, Part 3:

5. As I was at home to take care of some things I got online and realized my best friend, Stephanie, who lives in Oxford, England as of 2 months ago, was online. WE GOT TO SKYPE! I got to tell her about Ella's night "in person" and we got to talk. She and her girls prayed with me (and Will) and we got to catch up. I saw today that it was almost 45 minutes long but it seemed to go by so quickly. There were tears shed as we hung up, but God knew I needed her that day and I was so blessed by Him.

So, I went back up to the hospital. Joe left to come home and thankfully Kristie (who used to be here full-time) came over for the whole afternoon and took care of the boys so that Joe could catch a nap and just catch up. I had some wonderful visitors of Caroline Moore and Marian Ashwill...it's nice when people can come up and laugh and pray and love on your child. Caroline even laid in bed with Ella for a while so that I could just get up and stretch...more blessings. My cousin, Katy, came over to our house after Kristie left so that Joe could do bedtime routine and then come up and hang out with Ella and me for a little while. All of this time we are just waiting for her to just be a little more "with it" and start to eat and drink...she didn't drink anything until after 6pm last night...too late to try and get discharged.

Last night Ella and snuggled up again in our hospital bed and caught a few more hours of sleep...like 5 or 6! Today our beloved pediatrician came in and broke us out of jail (we *heart* Dr. Nale). All of our labs came back clear. No UTI, no ear infection...nothing they could find to explain anything.

We're home and recovering. I'm going to bed and getting to sleep the entire night without disruption (thank you sweet Katy for coming back over and taking care of Jonathan tonight) and hopefully our whole family is on the road to recovery.

This was so much harder for so many reasons. I really hate being away from Will and Jonathan for that long. JT is only 3 months old and I know he doesn't understand, but I feel like I'm abandoning him. Will knows I'm gone and misses me and that makes it hard. Ella only wanted me so I needed to take care of my sick baby...and if I'm honest, this was one of her hardest seizures on me. I very rarely let my brain go to the place that says that we could lose her. That all of her medical complications are just scary individually, but combined she is so fragile and it could go from our "normal" to bad very quickly. Joe used to be so afraid that the seizures would cause a heart attack or at least heart damage...I've never felt so afraid as I did during this attack.

I know God is teaching me...I just want to remember to rely totally on Him and trust Him to take care of my child...for we are all HIS children and He loves Ella more than I ever could.

Rough Sunday Morning

2010-10-24T13:43:00.003-06:00

This was Ella right before we left the house this morning...good start to the day.

Then the bottom fell out of my day. As we got to church, unloaded the kids and started making our trek into church Ella started crying. I know, most of you who have been around her have NEVER seen (or even heard of) her crying. It's heartbreaking. She has the biggest crocodile tears ever and the sound she makes when she's upset crushes everything that can hold you together. I took her out of her wheelchair and started comforting her, it got better for the elevator ride (good thing because there were a lot of people on there) and then it started again and wouldn't let up. As my dear friend Deborah came to help us...well, I started crying too. It's hard. 53...the number of months without any real communication from my daughter. No words. Oh, people say that she says this or that or understands...but to live with her daily, there is no communication. There are silent answers to things or a "yeah" or "okay"...but because doesn't have a "no"...it's hard to know if she's really answering or just agreeable. By the time I got it together and handed her off to Mrs. Lynn (her teacher for the last 3 years) she was fine, and she did great in Sunday School...even enjoyed the puppet show they had for all the Preschoolers. I have to say, the workers in our church childcare are amazing. They love all of my children and know them, and their quirks, it's really huge blessing. This is going to sound weird, but right now there is a radio commercial that I'm talking on here in Dallas. I'm directly talking about the childcare at church and how much they have meant to us...today was a shining example of why this ministry is so important to me.

I cried through Sunday School. I knew Ella was going to be fine, but it broke my heart. I can't communicate with her. I can't have witty banter, and arguments and discuss what she wants to wear...and today I need to ask what was wrong.

In God's perfect timing we had a study on HOPE and FAITH and TRUST today. The lesson was spoken by a wonderful man who lost a daughter at the age of 6...so he knows a lot about not asking "why" and allowing God to work through our situations. So my goal is to HOPE that Ella will be healed, to have FAITH that He can heal her if it's in His plan and TRUST that He will guide me through the situation regardless of what the outcome is for Ella or me.

"When I am afraid, I will trust in you. In God, whose word i praise, in God I trust; I will not be afraid. What can mortal man do to me?" Psalm 56:3-4

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him and He will make your paths straight." Proverbs 3:5-6

"And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose. For those whom He foreknew, He also predestined to become conformed to the image of His Son, so that He would be the firstborn among many brethren; and these whom He predestined, He also called; and these whom He called, He also justified; and these whom He justified, He also glorified." Romans 8: 28-30

Heaven

2010-09-27T10:08:00.005-06:00

So, after writing the last post I remembered that I've always wanted to post about this song (if you don't know the background, Steven Curtis Chapman wrote/sings this song after the loss of one of his young daughters):

Heaven is the face of a little girl
With dark brown eyes
That disappear when she smiles.
Heaven is the place
Where she calls my name
Says, “Daddy please come play with me for awhile.”

Chorus:

God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m aching for.
God, you know, I just can’t see beyond the door.
So right now...

Heaven is the sound of her breathing deep,
Lying on my chest, falling fast asleep while I sing.
And Heaven is the weight of her in my arms,
Being there to keep her safe from harm while she dreams

And God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m longing for
God, you know, I just can’t see beyond the door.

But in my mind’s eye I can see a place
Where Your glory fills every empty space.
All the cancer is gone,
Every mouth is fed,
And there’s no one left in the orphans’ bed.
Every lonely heart finds their one true love,
And there’s no more goodbye,
And no more not enough,
And there’s no more enemy.

Heaven is a sweet, maple syrup kiss
And a thousand other little things I miss with her gone.
Heaven is the place where she takes my hand
And leads me to You,
And we both run into Your arms.

Oh God, I know, it’s so much more than I can dream.
It’s far beyond anything I can conceive.
So God, You know, I’m trusting You until I see
Heaven in the face of my little girl,
Heaven in the face of my little girl.

I've wanted to re-write the lyrics to reflect how I think heaven will be for Ella. Heaven will be where Ella is able to talk, and run, and dance, and tell jokes, and sing praises to her Savior, and tell us all the thoughts she can't communicate here in this imperfect world.

We arrived to the evening service at church last night and the other mission churches of ours were there. As the music started I could see the "Silent Friends" ministry singing their praises...of course they were using sign language. I started to cry. I love singing in church. I always have. I can remember being a youth in church and dancing and singing right next to my friends. We would make up our own motions to the fast songs and to this day I miss standing next to Lesa because she was the person I always loved to hear sing in my ear. Worship through song was always my favorite part of the service, even though I can NOT sing according to the ears of this world. I wondered if Ella would ever just close her eyes and sing praises and know that she's singing to the One who saved her. Life with a special needs child is interesting. It's not "normal", and I know this because I have two typical children. It's also not the same kind of loss that is experienced when a child dies. I would say it's somewhere in between. I am so grateful that Ella survived her horrible infection and brain injury, but so sad some days when I realize how much she will miss. Granted, she'll probably miss out on a lot of pain, but I want her to get to experience true joy and love. I won't speculate to what will happen to Ella in the future, I mean...she's only 4-years-old; but I can say that there are days when it grips me how different this is than I had planned. Funny, something as simple as shopping is different for us. Ella has to wear one-piece outfits (rompers, longalls, etc) but that snap in the crotch for easy opening...not normal for most kids her age/size. I see all these cute clothes for little girls, but I know that I can't buy them and that stinks (umm, shopping is one of my favorite things in life!!).

Anyway, a lot of rambling and since I'm sleep deprived please excuse me if it doesn't make any sense.

Friends words

2010-09-27T09:52:00.002-06:00

I wanted to link to this blog of a dear friend. I love Alyssa dearly. Her Sydney and my Will are the same age, or would be...God called Sydney home on His time and not ours. Alyssa's words and transparency have been emotional and I feel like I have lived these last, almost 3 years, right along side my friend...even though she lives 700 miles away. I sent Lyss an email this morning to tell her that I realize our stories are very different, but I could relate to the "humor" of God that she writes about in this post.

I hate GBS

2010-08-30T13:11:00.002-06:00

So, if you've been reading our blog (or if you know anything about Ella's infection at birth) then the acronym GBS probably has crossed your path. GBS=Group B Streptococcus. I hate this infection...it's what caused Ella to be so sick at birth and then caused me 3 days in the hospital a short week after we came home with Jonathan. JT (Jonathan Thomas) was born on 8/9/10, and we came home on 8/11/10...by Thursday 8/19/10 I was admitted to the hospital with a horrible infection...I'll explain.

First, I went out for the first time on Wednesday night (yes 9 days after baby was born...I had cabin fever). We had a leadership meeting at church with some of our close friends and I wanted to go and thought it would be a good challenge to try and get all 3 kids to church...boy was it. I didn't realize till we were all loaded in the car that I might have over-extended myself already. We headed up to the church for our meeting. I guess I'd forgotten that you really are supposed to take it really easy the first week after childbirth, but honestly with kids, who takes it easy? The meeting was great, I felt horrible, but being with friends at church always seems to make life a little better. Shortly after we got home I told Joe (and my mom) that they were correct, I shouldn't have gone...a warm bath and a vicodin and I headed to bed, hoping for some sleep (1 hour at a time). In the morning our sweet Julie watched Ella and Will while Jonathan and I slept in from the lack of sleep during the night. By 10am I was up and at least moving. My wonderful in-laws had come to pick up Will (God is so good to us in ways we aren't even sure of yet) and I took it easy. A great friend, Dori, came over to bring me lunch...and I'm so glad someone was here. Julie had left to take Ella to therapy so it was just JT and myself. Dori and her adorable daughter Hallie came over with Chipotle and we chatted, played with the kids and as we were hanging out I started to really feel horrible. At first I thought it was just being tired, then I started to think it was just that lunch hadn't agreed with me...before Dori left I felt horrible. My back hurt so badly, I felt like I had a belt of cramps all the way around my middle, front and back. I ended up taking my temp (101.6) and started having the shakes really bad. Called my doctor, left a message...called Joe, told him to come home...called doctor back and said I needed to talk to someone and my wonderful OB/GYN got on the phone, talked to me for a minute and told me to come straight to his office...he was afraid I had an infection in my uterus.

So, my MIL came over to watch JT, Julie walked in with Ella and Joe came to get me all within a few minutes. Joe took me straight to Dr. Oliver's office where it was confirmed, I had a major infection. As I lay on the table getting blood drawn the doctor told me that I needed to be admitted to the hospital. I was devastated (backup...5 weeks after Will was born I had an appendicitis and had to have my appendix removed, and it was horrible being away from my kids and not able to breastfeed for days) and I started to cry...he informed me that if I wasn't admitted on IV antibiotics I would most likely be back in the hospital within days in need of an emergency hysterectomy. I'm not sure if Joe and I are planning on having any more kids, but I wanted to make that decision, not have it be made for me. (I know I have friends out there who have HAD to have emergency surgery or have been told that they, for medical reasons, are done having children...I have watched that pain and realized that I needed to do whatever the doctor told me to do.) I was sick, I was delirious and I was freaked out...and I just wanted to feel better.

So, I was admitted (poked in my arm about 20 times, well...it FELT like it) and given two antibiotics, TONS of saline (well, 3 gallons every 24 hours) and a morphine drip. Finally, I was diagnosed with GBS in my uterus and kidneys. After my infection was under control the doctor told me that he considered it life threatening, especially knowing what Ella had gone through only 4 years ago with the same infection. Rarely does GBS effect adults this way, but I'm now part of the small percentage of women effected by this infection.

I'm doing much better now. Jonathan is 3 weeks old and I've been out of the hospital for about 9 days since the infection. I'm still on medications at home and I do get really worn out, but that that could TOTALLY be from the lack of sleep from life with a newborn. I will say, when the doctor asked me to put my chin to my chest, to check for signs of meningitis I freaked, but luckily we escaped without any long term side effects! I went 28 years without ever hearing about GBS, and I could go the rest of my life without anyone I know ever being effected by it again.

Home...first few days

2010-08-30T13:04:00.002-06:00

Meeting Ella and Will

2010-08-30T11:57:00.005-06:00

If you are wondering about his head...he had to have an IV in his head to get antibiotics for 48 hours...looks worse than it seemed to be to him.

Jonathan Thomas Mitchell

2010-08-30T11:37:00.003-06:00

Jonathan Thomas Mitchell born at 7:45pm on 8/9/10 (yep, cool birthday)

6 lbs, 13 oz and 20 inches long

Waiting on a baby

2010-08-09T09:51:00.003-06:00

We are checked into the hospital...antibiotics have been running for about 15 hours now, epidural is in, 2cm dialated and 50% effaced as of 7am. Water should be broken in about an hour and we'll see what kind of progress we can get. For now, just hanging out. Lots of updates to come...stay tuned for more details and pictures to follow!

Sweet Baby Girl

2010-07-18T20:17:00.003-06:00

My darling daughter had another seizure last night, well this morning. I know that some of you who read this have watched your children seize more than you'd like, once is more than any of us need. I watched Ella seize for about 2 days straight within a day of being born. I remember the helpless feeling that there was nothing that I could do, and it seemed there was nothing that the doctors could do either...absolute frustration and helplessness. After 3 days of seizing she had tremors, I think they lasted another few days...and they were just as bad because it just felt like she was still so sick, she was. As soon as they got the seizures and tremors under control in the NICU she didn't have another episode...until almost 3 years later. I thought we were lucky. I read so many peoples stories about their kids and was so grateful not to have seizures. I felt like we had so many obstacles and was glad not to have that. And then they happened. No matter what we have done over the last 15 months, they keep coming. At first directly related to fevers and infections, but now, no trigger. We can't associate it with anything. The last 3 have been within 6 weeks, exactly 2 weeks apart each. I feel as though we are holding our breath now, just waiting for another one. If you have never seen your own child seize, I pray you never do. It's horrible. The last 6 seizures we have called 911 and gone to the hospital, for this one we stayed home. Joe heard her at 2:45am and jumped, knowing exactly what it was...we can hear them through the baby monitor. We administered the medication and waited. The full 2 minutes we watched her seize felt like 2 hours. Sitting there, doing nothing was horrible. As soon as the seizure was over she was back...back to being Ella. She made her normal noises and eye contact and even a popping noise that she does with her mouth. She smiled and was our little girl. We stared at her for about 15 minutes, waiting to see what would happen and then exhaled as the seizure didn't return. We picked her up, put her in our bed between the two of us and then slept off and on looking at her all night. She didn't move, that's what Valium will do to you, and she slept with her hand on her daddy, her hero. She's still a little sluggish today, but mostly back to herself. I don't know how much more of this I can take...it's emotionally and physically exhausting, but for now, our family is home and healthy.

...oh, and Will busted his lip at church today...crazy few hours of life.

Here is a picture of the kids from this evening:

The Human Brain

2010-07-02T12:34:00.003-06:00

I have realized that God is pretty amazing because no one has really figured out the human brain. It's like God's little secret He's keeping all to himself, but boy do I have questions for Him when I meet Him face to face...hopefully it won't really matter by that point.

Ella has a seizure disorder. Many will call it "epilepsy" but all that means is "seizure disorder" so we can really call it either way. I'll try to explain a little bit about what we found out from the neurologist today. I have to admit, I don't really understand all of what he said and as Joe and I drove away we started talking and realized that we have a ton more questions, but for now, these are the answers we received.

Ella's seizures are a cause of the brain damage done at birth and could have surfaced more recently because of new brain growth (the good kind) and an interaction with the present scar tissue and open pathways.
They have always occurred when Ella is sleeping and I learned (Joe already knew) that your brain is more active when it's asleep than when it's awake, so the constant movement on her raw pathways in her brain could trigger a seizure.
Why doesn't the medicine stop the seizures? It might just be lowering the number that she has. They can't prove that Ella would have more, or less, seizures off the meds, but we aren't willing to risk it either. The thought is that off the medication the seizures could be more frequent and more intense, so for now we just monitor the levels of medication and how her body processes that medication.
Exhaustion may play a role in Ella's seizure activity. We can't prove how long the exhaustion has to occur to lower her threshold for seizures, but we are going to try and be more proactive to prevent exhaustion, but not to completely decrease her involvement level in life...that's a rough balance for us because there are no clear cut lines on what level wears her out and causes her brain to react. This will have to be a prayer request that Joe and I will agree and feel a peace about the activities we elect for Ella to be involved in...both for her benefit and for her therapy.

That's all I can remember, but I'll have to see if I missed anything from Joe.

Morgan's Wonderland

2010-06-28T12:24:00.004-06:00

We took a family trip to San Antonio and visited Morgan's Wonderland...an amusement park for special needs children. It was WONDERFUL...here are our memories from the park...we didn't take pictures of the rest of the weekend, but it was just as fabulous.

Baller

2010-06-28T11:59:00.004-06:00

Yep, he is being influenced by his father:

Silly Pictures

2010-06-28T11:53:00.002-06:00

Seizures...Part 1 and Part 2

2010-06-28T11:47:00.002-06:00

Ella has been back to her seizure activity. She had a seizure on June 6th and again this morning on June 28th. We are currently looking to doctors and specialists to tell us why all these keep happening and will keep you posted as we get a diagnosis and a course of treatment.

She's the biggest trooper I've ever seen. She gets poked and prodded and tested and poked more and the child seems to come away unscathed...amazing.

Longest Break Ever

2010-06-28T10:47:00.005-06:00

Since I last posted (the month of May):

The Kramers came in town and played with us. I know they came in for a wedding, but it was nice to have some good friends visit (since they had just moved 6 weeks before to Atlanta).
We've had a lot of doctors appointments for Baby #3, his name will be Jonathan Thomas Mitchell and is due August 27th. We'll find out next Tuesday, July 6th (which is also my 32nd birthday) what day we are going to plan to induce. In case you are wondering, we induce to make sure and get the antibiotics to prevent the same infection that Ella contracted at birth.
We found out that our dear friends, The Poages, have gotten accepted to Oxford School of Business just north of London and will be headed "across the pond" sometime in September...bittersweet because it's wonderful for them, but so sad for those of us here.
Our church, First Baptist Dallas, announced that they raised enough funds ($115 million) to erect an updated Education Building and new Sanctuary...this was something that our family prayed about for a long time so it was a huge blessing to be part of the celebration. We can't wait for the official groundbreaking in two weeks!!
Ella "graduated" her first year of PPCD at school and loved her field day (note the Popsicle, which she enjoyed very much!)
Joe and I got to celebrate the 30th birthday of our friend, Allison Aars, and loved getting dressed up and commemorate a wonderful woman.

We discovered that Ella has a severe allergy to peanuts and a skin allergy to strawberries, both of which caused us to change her diet...and we find it changing out own diets. We now have added an EpiPen to our list of meds we carry around with us.
Thanks to some wonderful family friends we got a lift installed in the back of our minivan so that I can easily get Ella's wheelchair in and out of the car...it's been a huge blessing and I'll post pictures at some point.
Oh, and I fainted while shopping at Sam's. It all goes back to the Strawberry PopTart I had for breakfast that morning and my doctor has since laughed at me. Nothing to worry about, just an increase in protein each day.
For Memorial Day we went to the Arboretum (sorry, only one picture of Ella in a hat before the battery died) and then swam at the house:

Because he deserves a post

2010-05-12T12:17:00.003-06:00

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

2010-05-11T07:56:00.003-06:00

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

2010-05-10T21:30:00.002-06:00

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

2010-05-10T08:18:00.002-06:00

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

2010-05-06T21:53:00.002-06:00

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

2010-05-04T12:21:00.002-06:00

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

2010-05-03T09:12:00.003-06:00

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)

Selling My Child

2010-04-16T20:55:00.002-06:00

Well, I feel like I am selling Ella in the public world...I've submitted her for a cover photo contest on www.parents.com and you can decide if you "like" her pictures by clicking on this LINK and clicking on "I like".

Let me know if you can't find it or can't click on it for whatever reason. I'd love to get our "special" child on the cover of a magazine!! Don't you think everyone should get to see this smile!?!?

Ella's Developmental Update

2010-04-15T13:06:00.002-06:00

Ella has made some great progress. She is precious and wonderful and happy and probably as close to perfect as any child (who is almost 4 years old) can possibly be...I mean, really, she doesn't do anything wrong. This seems wonderful, but sometimes it's a little frustrating. I'd love to know what she thinks and what she wants and what frustrates her, but for now, she's our wonderful little girl.

We recently had a follow appointment with one of our favorite doctors (Dr. Kathleen Roberts) and the report says we were in the appointment for 105 minutes (almost 2 full hours)...she is so wonderful and really takes the time I need to cover all the details of Ella's progress.

Here are some words and phrases that she used to describe Ella's progress, diagnosis and needs. I'll try to include explanations so that we can all understand what she is saying.

"obvious motor impairment"-doesn't really require explanation. Ella has the motor capabilities of a 1-year-old. They won't move that age up any further until she can stand and walk unassisted.

"relative microcephaly"-a neurodevelopmental disorder in which the circumference of the head is more than two standard deviations smaller than average for the person's age and sex. (she has a small head, but God graced her with a head of full curly helmet hair and no one would ever notice that her head is small, even us)

"some residual strabismus present"-her eyes still float out, they have a difficult time staying in alignment.

Neurologically: "brisk deep tendon reflexes in the upper extremities; the left being much greater than the right, and also in the lower extremities she is brisk", "tone is low throughout her truck bu increased in her extremities" (she is really loose in the middle of her body and gets tighter as you get out to her fingers and toes, you should feel her grip her hair or kick her feet). "There is some asymmetry of tone noted as well", "strength is diminished and asymmetric" (her left side is more controlled than her right side)

Her language skills remain at about a 14-15 month level. She just did a new speech re-evaluation with her therapist at OCH so I'm going to see what she thinks about this age. We have noticed that Ella understands SO much more than she can communicate. Last night I asked her "where is the baby?" 3 different times and ever time she scratches my stomach and when I told her to "kiss the baby" she leaned down and put her mouth on my tummy, she even "sang" to the baby, but I'll have to get Joe to record all of this...it will be fun to watch and see for me AND for you (whoever "you" are).

Final Impressions:
Ella is a sweet little girl who has mixed cerebral palsy with features of predominantly right upper extremity spasticity (tightness) and otherwise extrapyramidal (neuronetwork) features including hypotonia (low muscle tone) through the trunk. She also has oropharyngeal dysphagia (swallowing disorder) and has graduated from her gastrostomy tube. She has made some nice progress with regard to feeding overall. She does appear to have some intellectual disability as well.

Diagnosis:

Cerebral palsy (an umbrella term encompassing of a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement)
Encephalopathy (literally means disorder or disease of the brain. In modern usage, it does not refer to a single disease, but rather to a syndrome of global brain dysfunction; this syndrome can be caused by many different illnesses)
Feeding difficulties
Cortical visual impairment (form of visual impairment that is caused by a brain problem rather than an eye problem. the latter is sometimes termed "ocular visual impairment"...which they have tested Ella for without being conclusive that the has... when discussed in contrast to CVI. Some people have CVI and OVI as well...Ella may have both, but none of her visual exams have been 100% conclusive. She does receive vision services through the school district and we LOVE our therapist so we hope she continues to receive these services)

That's all I can think of that is news, so if you have ANY questions please feel free to ask them!!

It's another...

2010-04-02T08:36:00.002-06:00

BOY for the Mitchells!! There are so many emotions wrapped up in gender for me. I think I have talked about it before, but I was really struggling with my feelings over boy or girl. I knew that I had no control over the actual choice, but I did have control over my reactions and my feelings. I wanted so badly for Will to have a friend and a buddy. He is sometimes is so much like an only child, because Ella doesn't play with him, or even beside him. He is the only one who ever gets in trouble, or spanked, and the only person who calls us "mom" and "dad". I think it's so good for him to be around other "typical" kids and I wanted him to have someone to carry the burden of Ella once we are gone. Well, what about having another girl? I have thought about what it would be like to have another girl. To dress her in clothes that don't have to be adjusted for her being on the floor or for diapers forever. To have someone who would care to wear bows or play with all the dolls and toys that Ella has received. Someone to boss around Will and just be a buddy for me to do "girly" things with all the time. Someone who would actually care to see the Disney castle with me or beg to meet all the princesses and want to get dressed up like them. Oddly, as much as I pain for all of those things when I see them...I don't really miss them on a day to day basis. I'm not super girly. I'm probably not very "proper" or do all the girl things that so many of my friends do. Even when it comes to dolls...I never played with them as a little girl and wouldn't know the first thing (or probably even enjoy) a pretend tea party. I really much prefer watching the Cowboys on a Sunday afternoon or wrestling with Will (when not 5 months pregnant). I'm excited that this baby is a boy. I think the Lord really read mine and Joe's hearts and knew that we just weren't ready to have another girl, neither of us was ready. God has really protected my heart in this area...seems small, but I've loved feeling blessed by the genders of my children being so carefully picked out. For now we are a family of 5. Some have asked if we are "done" and I don't have an honest answer. Joe and I always talked about having a lot of kids...started out at 6, but has moved to more like 4. It has been rough this time to have the two older kids and be pregnant. We will just have to see, in a couple of years, where the Lord has our family and if He has placed a desire and available energy for us to add another person. I really think that He gives you the "all done" signal if you are looking for it...and I'll just wait to see what He says. I'm grateful, as I'm reminded that I was once told that it would be touchy for me to ever get pregnant (with severe endometriosis) but the Lord has blessed us with 2 very wonderful children and we look forward to meeting #3. I am reminded constantly, through friends, that these children are His, and we have no guarantees, but for now I'm content with exactly how our family is shaping up! Oh, and no (oddly) we don't have a name yet. We had a girl name all ready to go, but we are still tweaking the boy name and will let you know as soon as we are sure on it.

Kramers

2010-04-01T20:43:00.003-06:00

Prior to our Florida excursion we had dinner with our dear friends Michael and Katherine before they headed off to be residents of the State of Georgia. My heart is still heavy about their move and I'll have to do an "Ode to the Kramers" soon.

Day 4: Resorting It

2010-04-01T20:23:00.004-06:00

On the last day of our trip we hung out with the new bride and groom, some friends and just laid around their resort and pool, then we sadly had to go home.

Day 3: Disney!!

2010-04-01T20:08:00.004-06:00

I have never been to Walt Disney World...so I pretty much MADE the adults take the kids so that I could go. Seriously, something magical about just seeing that castle!! Ella loved EVERY minute of it and Will enjoyed himself. I wish we had gotten to see more. Joe said next time we'll just stay at the park and do a little bit every day. Ella rode the teacups and I was so excited to watch her ride her first amusement ride...thrilling for both of us! I also discovered Ella's love for cotton candy...my kind of girl. And we couldn't leave the park without getting both of them a set of ears with their names on the back!

Travel, Wedding and Disney...Oh My

2010-04-01T09:22:00.002-06:00

Joe has three brothers...he's the youngest of the four boys. Matt (the "wisest) lives in Atlanta, Drew (in school to be a paramedic) lives in Orlando, and Josh (whom we've discussed previously) lives in China...then there is Joe. Last week Drew, the next to the oldest, got married to Sandra. We are VERY excited because I've known Sandra since before Joe and I got married and to me she's always been a part of the family...it was nice that Drew decided to make it official. I adore Sandra. She's from Puerto Rico and I understand about 75% of what she says, but she says 100% of it with a smile and a wonderful attitude so she makes me smile the whole time she's talking and I just love listening to whatever she's saying!! So, our family loaded up and headed to Orlando to get to attend the wedding and have a small vacation.

Day 1: VERY EARLY flight to Orlando. 8am flight=household up at 5am to get to the airport and through security in time...yuck. However, the kids were total troopers. Of course as soon as we hit the Florida sun the pool was the first place everyone headed!

Day 2: Wedding Day. It was a beautiful day and the wedding was held at an amazing golf course called the Windermere Country Club. Everything was perfect, except the bride was sick...I mean REALLY sick. Sandra ended up with a horrible horrible stomach virus that kept her away from everything except the ceremony itself...and then they spent all night in the hospital getting her rehydrated and better. Poor bride, but she was a trooper all weekend. The parting pictures are from some gifts that Sandra put together for the kids, and Will decided to model on the way home.

Back on the horse

2010-04-01T09:11:00.002-06:00

Here is Ella riding her beloved Stren!

The Wheels On the Bus

2010-04-01T09:03:00.003-06:00

Ella rides the bus to school now. It was slow going to get all scheduled and get the bus figured out, but it's wonderful. They pick her up every morning right at the end of our front sidewalk and drop her off every day after school. She really seems to love it, and it is a huge relief to me. Here is a shot of her ready to go and one of them getting her up and on the bus.

Howdy Cousin

2010-04-01T08:50:00.003-06:00

Josh is one of Joe's brothers (there will be more posts on brothers coming later). Josh is 18 months older than Joe and lives in China with his family (Wendy-wife, Abe-2.5 and Zeke-1.5). I'd say that we don't see them often, but we actually got to see them at Christmas, so getting to see them a lot this Winter/Spring was a huge treat. Here are some pictures of the Mitchell guys taking the little Mitchell's out to the Fort Worth Stockyards:

Step by STEPS

2010-04-01T08:32:00.002-06:00

Ella has started an AMAZING feeding clinic. The program is called STEPS and it's hosted by the Callier Center in Dallas. It's 16 weeks long and requires an hour and a half every Friday. It's set up great and I've learned as much as Ella has, maybe more. For the first 30 minutes we work on Ella's oral motor functions...just stretching out her cheeks, her lips, give her awareness of the parts of her mouth and waking up her tongue. This just gives the kids a chance to really use their mouths without having to work on the food and swallowing aspect of eating. Macy, Ella's therapist (seen here), loves that she can get in E's mouth without any problem . Most kids want NO ONE touching inside their mouths and Ella loves it! The next 30 minutes we go separate directions where I learn more about feeding and oral motor issues that may or may not effect Ella (a lot of good information to use with Will as well) and Ella goes with Macy and they work on core strength (since it's so key to Ella eating more safely). The last 30 minutes of the session we work all together to feed Ella new things she has never eaten before...it's SO fun and SOOOO nerve wracking. The first time we gave Ella a spoon full of Spaghetti-O's I held my breath. Ella has gotten cleared to eat so many new and "normal" foods at the house that it changes so much about our day and eating. I still get stuck in a rut at the house and find myself going back to the things that are easy and safe, but this has pushed us so far in the last few months and I can't wait to give you all our "graduation" report!!

BIG TIME SLACKER!!

2010-04-01T08:29:00.000-06:00

I know, big time blog slacker. Stay tuned.

Mother of the Bride

2010-03-06T10:05:00.001-06:00

So, currently watching the movie, Father of the Bride...and wondering...will I ever be the Mother of the Bride? Can't elborate, my heart feels heavy, but just thought I'd throw it out there.

A Blessing From God

2010-03-02T08:11:00.003-06:00

I'm reminded every Sunday morning, by a sweet and adorable lady at church, that Ella is a blessing from God. She always takes my hands and tells me that I have been given an amazing gift, and then she proceeds to gush all over my daughter...and Ella adores her. Mrs. Anderson usually makes me tear up and also makes me feel like "why the heck did God choose ME for this blessing?".

These last few weeks have been rough. A seizure, followed by the last days of having Kristie (after 17 months) and this week Ella started riding the bus to school...which has been a test. It's not what I would have chosen, it's still not what I want. I know that I'm supposed to want my desires to align with God's desires for my life, but most days my heart misses the mark. I have thought a lot about being Ella's mom lately. Every time someone says "you are such a great mom" or "I could never do what you do" or "I don't know how you do it"...and lately the looks I get when we say we are adding #3 are almost hysterical. This is my life. This is the life that GOD chose for me. Are you kidding me...I would love to have an absolutely perfect child who attends ballet class, and makes me laugh with little funny sayings, and wrestles her brother and countless other things that I had planned for Ella...but God had other plans and I wasn't privy to the making of them or the execution of them...I'm just hear to be Ella's mom.

I grow daily in what it means to be her mother. Yesterday was supposed to be the first day of Ella riding the bus. Mainly because it breaks my heart to wake up Will an hour before he usually gets up to load everyone in the car...and the wheelchair is so heavy that I really needed the relief. Back to yesterday...the bus didn't come. There was either miscommunication among the transportation department or they couldn't find a bus with a wheelchair lift, but either way we had to wait around all morning, ready to go, and then end up loading everyone up in the minivan and taking Ella myself. Today we thought they were picking her up at the beginning of the shift (a little before 7am) and they didn't show up till 8:05am...it's been a long morning. I know that the kinks will get worked out and that I am being refined, even through the process of Ella riding the bus, but refining hurts. I almost lost it when I had to walk away from the bus and let them do their jobs, but I know that we are doing the right thing...and sometimes just being in God's will is enough.

I ache today for a lot of reasons. I compare Ella to typical and special needs kids and I stumble. I realize that we really need a full-time respite attendant and God is calling us to wait on getting this filled.

So...more waiting.

Welcome to the 30 Club!!

2010-02-26T21:16:00.003-06:00

One of my dear friends, Stephanie Poage, turned 30 last Thursday. Stephanie and I have been friends for 5 years and I have grown as a friend, a mother and a woman of God because of her. She has forgiven me a LOT of faults and has loved me through the toughest days of the last 5 years. She has been the second person I've told that I was pregnant all 3 times and has held both of my children the day they were born (even if it meant driving from her nephews birth to see Will!). Here are some pictures of Stephanie and I that didn't make her memory board for the party!

4th in One Year

2010-02-26T20:56:00.003-06:00

Another seizure. Ella had her 4th seizure in the last 10 months. I can't believe that we've managed through 4 of these and that Ella is no worse for the wear. Last Wednesday morning, February 17th, Joe woke up a little after 5am to the sound of Ella coughing and he went in to check on her. It took him a second and then realized that a seizure was starting and by the time we got her emergency meds pushed in her she hadn't been seizing for longer than 10 mins. I'm so greatful that the Lord prompted Joe to wake up when He did. Ella and I traveled by ambulance and our wonderful neighbor came over until Kristie took over for the day. Usually I ride in the front of the ambulance, but this time they had me hold her on the stretcher in the back...not the safest mode of transport...oddly. Ella's seizure never reactivated after we gave her the Diastat and I'm SO greatful that they didn't have to use any of the sedatives on her. They couldn't find ANY infection and Ella never had a fever...so I got us released about 12 hours after arriving.

I know, lots of question.

Answers...in walks Dr. Daniel Nale, our WONDERFUL pediatrician. Dr. Nale LOVES the Lord and as been so amazing with Ella since day one. We don't always see eye to eye (tubes for Will's ears) but he really is great with my kids. Dr. Nale found an ear infection in one of Ella's ears and fluid in the other and determined that the infection lowered her threshold for the seizure. We are greatful to be on good meds and have wonderful doctors. Here are some pictures of Joe and Ella in Dr. Nale's office the say after the seizure getting all checked out!

Get Back on the Horse

2010-02-26T20:52:00.002-06:00

And she did and she LOVES it still!!! Equest in Wylie, TX has always been so much fun and when we end this semester Ella will have been a horse rider for over a year. I love that she has two very tall men for "side walkers" and she talks to them both the whole time. This is her horse, Stren, whom she loves...she buries her face in his mane when she first gets on...and she loves to scratch his back. I'm so greatful for this program!!

Olympic Training

2010-02-26T20:43:00.003-06:00

Our Young Married's ministry at church (First Baptist Dallas) decided that we all needed to practice our short track and ice dancing so they got a whole bunch of us together and we headed to the Plaza of the America's and went ice skating. I realize that there are only pictures of myself and some of my girlfriends, but I really wish I'd gotten pictures of Joe and Jennifer Misemer racing around the rink...that was the best!!

Dallas Snow

2010-02-26T20:26:00.003-06:00

I know everyone North of the Red River thinks we are nuts when our city freaks over a lot of snow, but this is the first time I can remember ever having this much snow...that sticks, for days. It was fun to watch, but our city isn't prepared so we totally shut down (I mean, why would we prepare for something that happens every 30 years?). Here are some of our photos:

Waiting...

2010-02-02T08:39:00.003-06:00

I feel like I wait around a lot...wait for therapy to work, wait for insurance to approve something, wait for something to get ordered or reordered, wait for a call back from our social worker, and yesterday it was waiting on a doctor (not the first time).

As many of you know, Ella has chronic urinary tract infections (UTI). If you will remember, it was the reason for her first two seizure episodes (April and August of 2009). These infections grab a hold of Ella's body and cause havoc to all of her systems.

We have been seeing the "best" urologist for children in Dallas since Ella first started having UTIs and then we saw the same doctor when Will needed surgery to perform his circumcision...I love the doctor, but his office is less than wonderful...heck, they are less than acceptable.

I hate to go into ALL the ways that I've been disappointed by this office over the last 9 months, but yesterday was the last straw (and last visit from us).

Our appointment was for 3:45pm and I called at 3:35pm to let them know that we were running about 5 minutes behind (mainly because I knew that it would take me extra time to get her chair out of the car because it's heavy and just takes me a second to organize to lift). So, we arrive, sign in...and wait. We waited for 45 minutes to even get into an exam room.

SIDENOTE: (This has nothing to do directly with the office, but added to my irritation of the appointment.) As we arrived and settled into our waiting area we were greeted by a darling 2-year-old. How do I know her age? Well, she kept calling Ella a "baby"..."hey mommy, look at the baby", "what's your baby's name?"...BABY?!!? GRRR. So I asked this child how old she was (figured around E's age) and her mother told me she was 2 1/2. First off, she had great vocabulary...speaking in full sentences which I totally understood. But as she kept calling Ella a baby and I started to explain that Ella was older than her and not a baby and had difficulties, Ella started to get VERY upset. Anyone that knows Ella knows that it takes a LOT to get her upset, and this girl must have hit her buttons. The mom was doing NOTHING as this little girl was insulting my child. I wouldn't normally think that Ella understands when we explain her "condition", but I think yesterday proved me wrong. Finally the little girl got called back and Ella was perfectly fine to watch a Chipmunk movie and watch a true little baby across the room. And we waited...

When we got called back I was asked a question "do you cath her or is she potty trained?"...this irritates me. We have cathed her EVERY time we've ever come into the office. {In fact, one time the lady said that I needed to sit her on the potty and see if she would give them a sample that way...ever tried holding a 3o lb sack of dead weight over a toilet while trying to convince it to pee...and all the while trying not to touch anything in the bathroom...frustrating.} So, I said that they would need to cath her if they wanted a sample. Then the nurse asked if I thought she had a UTI (if I did then I would have made an appointment based on that!) so they decided not to test her urine because they don't like to cath if they don't have to. Actually, I wasn't terribly bummed about this because it's the one place that can't seem to ever cath her on the first (or 5th) try...and Ella is VERY uncomfortable every time. You would think that a Pediatric Urology office could cath a child...geez.

So, we get to the room and they tell us that it's not the room that we need to be in because it doesn't have a sono machine, so we just sit there and wait......no one EVER says anything about the fact that they are now running an hour behind! Finally the Nurse Practitioner comes in (the whole reason I made THIS appointment was to see the DOCTOR, because I was tired to talking to someone who knows nothing about our case). So, I walked out without seeing the doctor, they never tested her urine OR did a sonogram, I'm pretty sure they gave me a the wrong meds on the prescription and I needed to get out of there quickly so I didn't even wait for all of our receipts to print out.

Tired of waiting on medical professionals to have Ella's best interests at heart...how do I explain that I don't really care what else is going on in their office...when my daughter gets there I expect to be treated with respect and like my time and daughter matter.

Boot Scootin'

2010-02-01T11:48:00.002-06:00

Our Young Marrieds deparment at church decided to have a GREAT Boot Scoot on Friday night. There were around 100 people who decided to come out for some amazing BBQ (thanks Spearmans!), some roping lessons and some dance lessons...so much fun!! Notice I'm watching my feet the whole time...gotta make sure and the get steps right! The group shot is just our Sunday School class...we had a BLAST!!

Picture of Stephanie, Andrea and Caroline

2 Years Old!!

2010-02-01T10:55:00.003-06:00

Will turned 2 on Friday the 29th. Here are some pictures of our big boy and his stats:

Weight: 32#, 4oz @ 90th%

Height: 38 1/8" @ +95th%

Head: 20 1/16" @ 95th%...his head is almost as big as Joe's...makes us laugh

Will post birthday party pictures as soon as some friends upload them...my camera died after only two pictures!!

Ella will eat anything

2010-02-01T10:52:00.003-06:00

Will had left some cracker pieces on the floor (also known as leaving crumbs everywhere) and Ella crawled as fast as she could to try and eat them off the floor. Not because we starve her, but because she really loves to eat whatever Will is eating and saw an opportunity to eat crunchy foods (which we don't give her). She's getting MUCH better at chewing and swallowing, so soon she'll have her own crackers. Thought it was funny that she made a bee-line for this little treat.

Ella and Avery

2010-02-01T10:47:00.003-06:00

Ella and Avery are only 2 days apart (and Avery's mom, Maggie, and I have been friends for almost 10 years!). It's fun when Avery's Grandmother (who is also Ella's school nurse and sitter) comes and brings Avery to play!!

Aren't They Precious?

2010-02-01T10:33:00.003-06:00

This Video is Wonderful

2010-01-28T20:16:00.003-06:00

http://www.youtube.com/watch?v=PTCvzm2YueA

Here is the story and a small piece of the song.
http://www.youtube.com/watch?v=mc5RDJnF2vI
Not the best theology, but a beautiful song. Thanks to www.KelseyCan.com for writing out the lyrics.

Hospital Soap

2010-01-21T16:24:00.002-06:00

I wish that my blog was "scratch-n-sniff", I would link you to the smell of hospital soap. As I was leaving Ella's therapy today I realized something, all hospital soap smells the same...and it all takes me back to the NICU. Yep, 32 months later I can still conjure up the feeling of the NICU by smelling soap. I'm pretty sure that there is no way to add up the number of hours that we have spent in a hospital/doctors office/therapy location over the past 3+ years, but all of those places have one thing in common, a smell that puts them all in the same memory bank in my head. I wonder if the freshness of the hospital will ever fade, like the memories of my grandparents who have been gone for almost 16 years now, or if the memory will never fade because we will constantly be in the middle of the medical world. Today, it's fresh and smells like soap.

Blog Music

2010-01-12T20:57:00.002-06:00

Okay, so I've been asked by a couple of people about a song playing on my blog. I thought I had taken off all of my music because it seems to drive Chris Hill nuts...but alas, Slide.com went ahead and added music (which doesn't fit) to one of my slide shows. I can't take it off, sorry Chris.

For those of you who have asked about the song it's "Beautifully" by Jay Brannan.

I love writings like these...

2010-01-11T21:08:00.002-06:00

Thank you Jennifer for posting this:

I Am The Child

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of. I see that as well. I am aware of much...whether you are happy or sad or fearful, patient or impatient, full of love and desire , or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, repsonses over my well being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards...great strides in development that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable...I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers.

I am the child who cannot talk.I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependant on you in these ways. My gift to you is to make your more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher, if you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

Faith and Trust for #3

2010-01-07T14:03:00.007-06:00

Ella 1 Day Old

Will 1 Day Old

I have a lot of great, wonderful and heartbreaking blogs that I follow...and a lot of them have children just like our Ella. One of the blogs that I read is about a little boy named Max. Ellen is Max's mom and she posed a question today "Where you scared of going for kid no 2?" As I read through the post and then the comments I realized that I was scared about having William, but knowing that Ella's condition was such a fluke and so rare, I think I really let go of the fear and allowed God to do what HE felt was right for us and for His glory. I have to admit, I think getting pregnant with Will I was still in a fog and not really sure what the heck I was doing...again. I remember thinking that I didn't know how I was going to do every day with both kids, and I'm still not sure. I do know that finding Kristie when we did was a huge blessing and in more ways than I could have imagined.

Well, if thinking about having two kids was scary, then why in the WORLD would we think that we could handle THREE kids?!? I don't know. Honestly, I'm not sure I was ready to tackle the question of the next one. I was just figuring out our system with two. Will is at the point where he can communicate and walk and feed himself...things I'd never experianced thus far with a child...and now we are adding an infant into the mix.

One reason we announced so early was to ask for prayer. I need prayer as we look for a new attendant to help us everyday (as Kristie has decided to move on to a different job). I need prayer for my fears of anything happening again. Honestly, the amount of special needs blogs helps, because I don't feel along and hurts, because I see how much is possible out there.

So, how do I combat the fears? Prayer and faith and trust. I pray, and hear my husband pray, daily over fears. All of the "what if's" and "how do we" can keep me from moving forward any day. I have faith that my God is bigger than any of these fears. I believe that my God is good and faithful and loves me and my daughter very much. Although it's hard to know why Ella is handicapped, I know that no answer this side of heaven would be good enough to know why. I trust Him. I'm reminded of the question that Joe and I have been asked by God every day, but more loudly since Ella was born "Do you trust me?" and some days "Do you REALLY trust me?" I want to trust Him. I want to put all of my trust in Him. Some days I do really good at this...and some days I struggle and pray for more faith.

When I look at the babies above I get excited that they will get another sibling. Ella will have someone else who pushes her and Will will get an actual playmate. I also never wanted to put all of the pressure of Ella's long-term care on Will...now he will have someone to share that responcibility with when we are gone.

I ask for prayers and wisdom. Three children is difficult for ANYONE, but when you add in a child who is 32 lbs and doesn't walk or talk or feed herself or a long list of other things, it's IS scary.

*This post seems all over the place as I read it back to myself. I've stopped a few times while writing it as I'm sitting in the waiting room where Ella has therapy. I've had one PT come out and tell me what all we need to do and who all we need to contact to her her new feeding system ordered and approved. Her other PT came out to tell me how she did today and how she just doesn't process her right side very well, and what we can do at home to help her. I'm waiting on Speech and OT to come and give me their opinions of today...and I pray that she did well for them. I then got distracted by an older boy, maybe even 18, laying in a wheelchair and looking at a board with his eyes to tell him mom what he wanted because he couldn't speak. Fears...I have so many. I want her to walk, I want her to talk, I want her to be functioning as a 3 year old. But I want God to be glorified, and I want to desire what HE has planned for all of us, all 5 of us.

Day 6...Cozumel

2010-01-05T14:51:00.004-06:00

This picture is for Joe's brother Matthew who works for Coke.

Day 5...(Part 2) New Years Eve

2010-01-05T14:44:00.003-06:00

Day 5...(Part 1) Grand Cayman

2010-01-05T14:05:00.002-06:00

Day 4...Jamaica

2010-01-04T17:36:00.008-06:00

On Wednesday we had our first day at a port. Pulling into Jamaica was beautiful. It's a very green country. We started out by heading to Dunn's River Falls (the 2nd picture, off the web, not from my camera) and we climbed all the way to the top...it's a great climb and with the rushing water it's a lot of fun. We got one professional picture, but none with the camera because I would have dropped it in the water for sure. We then went down the road of Ocho Rios to Mystic Mountain and took a "ski lift" to the top of the mountain...I was wet and cold, but it was beautiful, it went 700 ft above Jamaica and you could see coast and tree tops...amazing to see what God has made in other places in the world. Notice Joe standing and reading historical information...the man loves to stop and read this stuff, ALL of it. Again, no idea what our towel animal was, a little disappointed. That night we did karaoke on the boat...SO much fun. Eric Couch tried out to be Garth Brooks in a talent show (watch for Saturdays pictures) and Joe even sang a few times, somehow I missed the pictures of Joe singing, but someone has it and I'll link to it soon. The lady running the karaoke night enjoyed Joe so much that she had him wrap up the night, yep, it was that bad. The video at the bottom makes me smile. I'll leave it up until Stephanie notices that I have it on here and asks me to take it off the Internet, till then, enjoy. Catherine Couch is singing to Steph's moves.

Day 3...getting warmer

2010-01-04T17:16:00.003-06:00

It was chilly the first few days on the top deck...lots of wind, but we got some sun before the big warm start started setting. We sat here the WHOLE day...perfection!

And there were a LOT of games of CatchPhrase late at night:

Day 2

2010-01-04T17:13:00.001-06:00

Cruising...Day 1

2010-01-04T15:59:00.004-06:00

You might start out by asking WHY and HOW we went on a 7-Day, all expenses paid, Caribbean cruise with 12 couples that we adore and have known anywhere from 6 months to 5 years. Let me tell you:

In December of 2008 our Sunday School teachers, Reed and Marian, gave us a challenge. Not only to memorize scripture, but to learn it and to hide God's word so deeply in our hearts that it would be there at all times for us to lean on. To qualify for the the cruise each husband and wife would have to recite 11 pre-determined scripture verses, these were only our "Qualifying Verses" and would lay the ground work for those who wanted to take part in the challenge. Then for each "battery" of verses that we recited beyond the QV we could earn $500 per person. There were 5 Batteries of Verses and 3 Bonus Batteries for extra spending money. Most couples memorized all 5 batteries and the bonus batteries...so their ENTIRE trip was paid for and they got all of the extra spending money...what an amazing incentive, but not really the reward. There were a total of 164 verses and all the books of the bible, Joe and I got through 3 of the batteries (87 verses) but we plan on finishing, even if the monetary reward is done. It has been a life changing experience for us. I watched as the verses I was committing to my heart were revealed as truth in my life at the time. The last time Ella had her seizure we were starting to memorize Battery 3 and here are some of the verses that I clung to (and still do):

Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, that you may be perfect and complete, lacking in nothing. James 1:2-4

And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us. Romans 5:3-5

Beloved, do not be surprised at the fiery ordeal among you, which comes upon you for your testing, as though some strange thing were happening to you; but to the degree that you share the sufferings of Christ, keep on rejoicing; so that also at the revelation of His glory, you may rejoice with exultation. If you are reviled for the name of Christ, you are blessed, because the Spirit of glory and of God rests upon you. 1 Peter 4:12-14

No temptation has overtaken you but such as is common to man; and God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will provide the way of escape also, that you may be able to endure it. 1 Corinthians 10:13

For though we walk in the flesh, we do not war according to the flesh, for the weapons of our warfare are not of the flesh, but divinely powerful for the destruction of fortresses. We are destroying speculations and every lofty thing raised up against the knowledge of God, and we are taking every thought captive to the obedience of Christ. 2 Corinthians 10:3-5

Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, shall guard your hearts and your minds in Christ Jesus. Philippians 4:6-7

And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, that the power of Christ may dwell in me. 2 Corinthians 12:9

‘Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand.’ Isaiah 41:10

“When you pass through the waters, I will be with you; And through the rivers, they will not overflow you. When you walk through the fire, you will not be scorched, Nor will the flame burn you. “For I am the Lord your God, The Holy One of Israel, your Savior; Isaiah 43:2-3a

“These things I have spoken to you, that in Me you may have peace. In the world you have tribulation, but take courage; I have overcome the world.” John 16:33

And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose. For whom He foreknew, He also predestined to become conformed to the image of His Son, that He might be the first-born among many brethren; and whom He predestined, these He also called; and whom He called, these He also justified; and whom He justified, these He also glorified. Romans 8:28-30

Now to Him who is able to keep you from stumbling, and to make you stand in the presence of His glory blameless with great joy, to the only God our Savior, through Jesus Christ our Lord, be glory, majesty, dominion and authority, before all time and now and forever. Amen. Jude 24-25

A lot of the verses I pray directly over Ella...because these are promises that He will keep, even if we see them fulfilled on the other side in Heaven. I have no doubt that God loves me and love Ella and has our lives designed for a reason...these verses help me so much when I doubt who He is or why I believe that He is good. These are just an example of the scripture that all 12 couples learned and committed to memory and their lives...so here is the start of the pictures of a small reward for our hard work:

Mitchell Family Christmas

2010-01-04T15:33:00.005-06:00

I love going to the Mitchell's. I say that as if we aren't over there EVERY week. In fact, both of my in-laws are sick right now, probably from the crazy amount of family that they have housed over the past 3 weeks.

Joe has 3 older brothers. I have never had older brothers and I love it!! Matthew is the "wisest" and lives in Atlanta and works for Coca-Cola and helps them acquire new companies and products(Joe and I actually saw him on a CNN show about Coke a couple of weeks ago, he's brilliant). Drew is the next in line and lives in Orlando, FL and is currently finishing up school to be a Paramedic/EMT/Firefighter...this is VERY close to my heart since we have had to call an ambulance 3 times this year for Ella, to know that he's being that assistance for other families makes me love him more than ever. Josh is the closest to Joe in age (18 months older) and currently lives in China with his wife Wendy and their two boys Abraham "Abe" (6 months older than Will) and Ezekiel "Zeke" (13 months old), there is a lot I could say about how they serve, but I'll keep it off the world wide web.

ALL the boys and the kids were in town for Christmas. Seeing that we are spread all over the globe, that's a feat, and a treat. We spent a lot of time just sitting around talking, laughing, watching the kids, and of course cribbage (don't ask, I don't understand it, but the boys have played it EVERY TIME they have been together for at least the 6 years that I've known Joe).

Here are some pictures from the wonderful few days of Christmas.

Christmas Morning

2010-01-04T15:20:00.003-06:00

Joe and I have decided to to one thing very differently from my parents on Christmas morning. We've decided to NOT give our kids every toy that Toys R Us can fit in one store. My Christmas' were WONDERFUL as a kid. Each of us got our own color of wrapping paper with gifts inside that came out to the middle of the living room, we also had our 1-2 BIG Santa gifts that were unwrapped and then our stockings were overflowing...I honestly believe that my mom had more fun seeing the tree and us tear threw the forests of paper than we EVER had in opening the gifts. My mom was VERY structured about Christmas and made sure we all had about the same number of gifts and that each of our amounts added up to around the same value. She must have felt crazy by the time she started wrapping them all. Joe and I are very different. It probably started because we never know what to get Ella and have only given her 1-2 presents for the last 4 years because there really isn't anything that she "wants". We decided to carry this on each year and only give the kids a couple of gifts that they will really enjoy, and let uncles, aunts, cousins and grandparents fill in the blanks (not that we have many toy blanks in our house). This year we gave Ella a baby doll (because I felt like it was age-appropriate and something that was safe for her to play with each day) and a shopping cart, see previous post, because she can actually use it to learn to walk (we just need weights to keep it from coming down). William was a lot easier to buy for, but hard to know where to stop...he got cowboy boots (if you know Joe, then you know this is VERY appropriate) and Little People Airplane and Barn sets. It's been so funny to watch Ella try to take his plane and he puts all of his toys in her shopping cart and takes off...I guess they are pretty typical siblings. It was so nice to enjoy Christmas as just the 4 of us...till we headed to the Mitchell's...stay tuned.

Elkins' Christmas Eve

2010-01-04T15:11:00.003-06:00

We've done Christmas Eve with my mom's family (the Elkins' side) since as long as I remember. My Granny and PawPaw did it at their house until they both passed away in 1995 and it's now been passed down to our generation. I was VERY glad to have, almost, everyone here this year (we missed Joe, Aubrey and Taylor). Traditions are very strong in our family, so carrying them on to our children has been fun. It was a great night of food, games and a lot of laughter...I think my grandparents would have loved it this year with all of the GREAT-grandchildren.

A Father's Christmas Duty...

2010-01-04T13:09:00.003-06:00

I always laughed at the stories that my mom told of my dad staying up till all hours on Christmas Eve to put toys together, whether it was a dollhouse, bike, or any of the millions of toys we received as children, "Santa" always had them put together so that they were ready to play with as soon as the gift was opened. My dad then made the rule that if it needed to be assembled, then it wasn't purchased. I got to witness this as a mother this year. We bought Ella a shopping cart and baby doll...here is Joe assembling the cart, you should have heard his frustration as it wasn't going together very easily, but well worth the work on Christmas morning.

Christmas Train

2010-01-04T12:24:00.005-06:00

This amazing man in Richardson dedicates his WHOLE backyard to a Christmas train that kids and adults can ride. It's totally FREE and he doesn't even take donations, just volunteers during the year to help with the phycial needs. He literally dug up his whole yard...so unselfish and a blessing. Since Joe's brother and family were in town from China, we decided to take all the grandkids out to ride. Here are Will and Ella, along with Abe and Zeke, riding the train!

We're Expecting

2009-12-22T21:18:00.001-06:00

Some of you might have already read, but this post is to announce that we are expecting our 3rd child in August. We'll keep you updated as the pregnancy progresses. Thank you already for your prayers of health.

School Field Trip to Collin Creek Mall

2009-12-21T15:43:00.003-06:00

Thanks to our wonderful Kristie, I got to take both of the kids to Ella's field trip to Collin Creek Mall. Ella sat on Santa's lap (Will freaked and wanted nothing to do with the fuzzy man). Both kids played on the great indoor playground. Ella fed herself ice cream with all of her friends and then Will got to take Ella's turn on the train in the mall...benefit to being the little brother (the same size as the 3 and 4 year olds).

Girls Night at Rise

2009-12-21T15:31:00.002-06:00

These girls are very special to me. They have all been there since BEFORE Joe and I started dating and have been shoulder's for me to cry on and laugh with...we all needed this dinner to catch up and laugh some more.

FC Christmas Party 2008...end of memory lane.

2009-12-21T15:25:00.002-06:00

You can tell I had a lot of fun with friends this year. Two kids at home will do that to you.

Fellowship Class Christmas Party 2007...memories...

2009-12-21T15:20:00.002-06:00

Stephanie is 6 months pregnant with Julia and I'm 8 months pregnant with William. Stay tuned for 2008 and Ashley will be pregnant...it's contagious in the class.

Fellowship Class Christmas Party 2006...just for fun

2009-12-21T15:13:00.000-06:00

Sunday School Christmas Party

2009-12-21T14:50:00.002-06:00

Soft...like a scarf.

2009-12-21T14:45:00.002-06:00

Joe and his brother, Josh, had a cat when they were younger...named Scarf. When asked WHY they named him that the answer is..."because he was soft, like a scarf". Weird.

Here is our little man in a scarf because he wanted one like mommy's.

I can communicate!

2009-12-21T14:39:00.003-06:00

This is a device that speaks words or phrases when you press the large blue buttons. Our AMAZING Speech Therapist, Jennifer, put sticker on each button. One says "juice" with a picture and one says "pudding" with a picture. Ella is pressing the "juice" button and then getting her juice!! It's fun to watch her figure out that she can actually ask for something and we understand her. We are working on this at home as well. This is very exciting. One small step at a time.

Mitchell Christmas Tree 2009

2009-12-21T14:20:00.006-06:00

Step 1: Play at the Christmas Tree farm while it's freezing outside:

Step 2a: Wait till the kids are asleep and bring in the tree:

Step 2b: Set up the tree:

Step 3: Wait till the tree has relaxed a day to decorate...make sure there is egg nogg:

and cookies:

Step 4: Decorate:

Step 5: Fall Asleep while sitting up, from all the fun:

Angel and Lights

2009-12-21T14:18:00.001-06:00

Here is our precious angel looking at Christmas Lights as we drive around Dallas. They were beautiful, but she is a gift from God.

When it gets cold...we head to the mall

2009-12-21T14:08:00.003-06:00

Happy 2nd Birthday Hank

2009-12-21T13:50:00.004-06:00

Thanksgiving Day Parade

2009-12-21T13:38:00.002-06:00

Nope, we didn't go to one, but here is Ella watching the big one on TV.

Riding Along in my Automobile

2009-12-21T13:31:00.002-06:00

They both LOVE to hold hands in the car...he reaches out and then she'll reach out and he'll grab her hand. They will sit like that for a long time. So absolutely sweet.

Bowen's 2nd Birthday Party

2009-12-21T13:24:00.002-06:00

Prayer

2009-11-30T22:09:00.003-06:00

I don't think I've ever been able to express how Ella has changed and challenges my prayer life. I wanted you to be able to read my friend Chrystie's blog post about prayer and our little girls. I know I've posted on here about Chrystie before. Her little girl, Ellie, is almost exactly a year ahead of Ella. Please pray for us as we learn how to pray for our children.

Tonight

2009-11-24T01:09:00.004-06:00

It's 1am and I'm up because Joe is at the hospital. He's sitting and praying with friends who are sitting in the same spot we were 3.5 years ago. They are waiting for doctors to come in and explain what's wrong with their baby, why they can't hold him and why there are no answers. Tonight's prayers and thoughts of our friends have taken me back. Taken me to that room where the doctors and nurses tried to explain what was happening to Ella. Where they assumed the worst and told us out loud what that would look like...if it was what happened. I've remembered the smells of the N.I.C.U., the sounds of machines, the weight in my chest for all that was happening to Ella, and I was helpless to physically do anything for her. We prayed. A lot. We asked for healing...answered. We asked for her to live...answered. We asked for peace...answered...daily. I have faith in our Creator, our Maker and the One who oversees us all. I believe with all of my being that Ella was fearfully and wonderfully made and that she was knit together in my womb to be exactly as she is today. Tonight she sleeps in her bed. Joe and I went in to stare at our children before he left. How grateful am I that my children are in their beds, sleeping, and healthy. Very. I pray for my friend who is getting no sleep and yet it's something she dearly needs. Processing words that she should never have to hear. Imagining a life she should never have to see. It's a cruel world. God told us that it would be difficult. I have to say, as a believer in Christ, it's a lot easier than if you have no faith, nothing to trust in, no hope. What do you do without a God to pray to...whom you believe can heal your child? I remember the sounds of my husband faithfully praying. I don't even remember the words, just the sound as we both lie in my hospital bed, weeping; and the feeling that everything would be alright. Not because Ella would surely live, for that took a few days to be sure of, but because we have a God who is bigger than that situation. A God who could heal my heart, just like He healed my child. A God that gives me pure strength from Him to proceed on the days when I literally just want to give up. It's hard being a parent. It's hard to punish your children when you just want to ignore the tantrum. It's hard to decide on which wheelchair to buy your 3-year-old. It's hard to tell them they can't go outside because it's raining and cold and they are still sick. It's hard to give a bath to a strong child who could drown if I look away for a second. It's hard to love someone so much, and let them belong completely to the God who gave them to me.

That's what my friends are learning now. Complete faith. Faith that God is in control when it doesn't feel like it. That there is nothing they can do but pray. And to trust that God is still sovereign. That he's the same God who bore Sarah and Abraham a son when they were over 100 years old. The same God who protected Joseph, time and time again. The same God who created my child to have differences and difficulty...and allow her life to glorify Him. The same God who allowed His own child to die, because it was the only perfect sacrifice and He knew it.

These are hard lessons. However, I am constantly running over something in my head that the pastor said on Sunday "God can not use us greatly, until He has hurt us deeply". To be molded and refined is painful and agonizing, but we have the choice to come out of the fire looking more like a reflection of Him, and I do pray that my friends will cling to Him so that after this fire they will feel stronger and more purified for having survived it with faith. And I pray for that baby boy...that all of the current problems will be gone and all tests will come back, miraculously, clear.