15 Months and Growing

Will's 15 month stats:

Weight: 27 lbs (80th%)
Length: 34" (over 95th%)
Head: 19.25" (90th%)

So...he's healthy and getting bigger by the day. He also wears a size 7 shoe...poor Ella only wears a 4 or 5!

Home Sweet Home

We are home. Ahhh, I love my house. I love our routine that has become so much a part of our lives. I love our friends who came and brought us dinner and were okay with just having a carpet picnic...Poage, you are wonderful friends. I love getting both of my kids bathed and in bed and they are both asleep...and I think they know that life is back to how it should be.

Well, she had a febrile seizure...pretty much a seizure caused by fever. Now, what caused the fever to spike? A UTI (Urinary Tract Infection) was the infection, but we later learned today that they had the bacteria wrong. There are 3-4 usual bacteria that cause a UTI...so that's how they were treating the infection. Today they found out that it was a different bacteria (Enterococccus Faecalis) so we had to change her antibiotics.

So, what does all of this mean going forward?

Ella will be on seizure meds for at least the next 2 years (it's a minimum, some doctors say 5 years). She will take Trileptal 3X a day, every day, for 2 years...then we can recheck where we stand. (also, no driving for at least 6 months, thanks Collin for reminding me not to let her behind the wheel) Amoxicillin for the next 10 days to get the UTI under control. They also want her on Miralax (a laxative) to make sure that she doesn't get any bacteria anywhere it's common. We have also been given a Diastat so that if she ever has a seizure for longer than 3 mins or more than 2 in a 24 hour period, we can give her a shot. It's like an epi pen for seizures, I guess.

She is still really weak and very floppy. If you know E then you would think that was our normal, but she's even more floppy and really weak and tired, so we are just letting her adjust.

I'm guessing that this means that "camp" is out for this session, but I will talk to them tomorrow. I'm not sure when we will start back up with all of her other therapies, we will take it one day at a time.

Thanks again for all of your prayers. Thank you for loving our family, and mainly our daughter so much. Thank you for the visits at the hospital, the baskets of food, the meals, the hugs, the texts and facebook/blog messages. Thank you for having the faith in our Lord, that you asked for Him to heal Ella, and He did. Either way, please make sure and tell Him "thank you". We have thanked Him a lot today.

(These are all the pictures I took before my camera died...this was the second day in the PICU)

Baby Girl

I talked to Joe recently. Ella is still very out of it. He said she's more lethargic than before we left at shift change (can't be in the PICU from 6:45-8:00..morning and night). The Roughton's and Joe's dad are up there with Joe and Ella...he said she does seem more alert when they are playing with her. They hadn't given her the seizure meds yet because they came in a pill form so they had to reorder them as a liquid. She has also drank about 4 oz. out of her sippy cup.

I'll update tomorrow.

"For You formed my inward parts; You wove me in my mother's womb. I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well. My frame was not hidden from You, When I was made in secret, And skillfully wrought in the depths of the earth;" Psalm 139:13-15

She's Awake

Ella is awake...she's about 25% herself...we have no idea how long it will take till she is fully back to herself...and we can't leave till she is...maybe tomorrow or Sunday. We are still waiting on blood work and cultures...which can take 24-48 hours. They have held off on doing an EEG to find out seizure activity.

I love you all and thank you so much for your constant prayers.

If you could each just say a prayer to our gracious Lord that this will not cause a set back in any of her therapy advances...I think that is one of my biggest concerns right now.

I'll update again tonight.

Andrea

Ella Update

First, for those who do not know Ella was rushed to the ER this morning at 8:30 am. Kristi went in to get Ella ready for Camp and found Ella having seizures and she had thrown up in her bed. She picked Ella up and rushed her to Andrea's room, where Andrea took her and said she was extremely hot. They called 911 and had her rushed to the hospital.

They have sedated Ella and have also run a few test to include a CT scan. She has been admitted to the PICU and is no longer in the ER. At this time they know she has a SEVERE uti which may ave caused the seizures. She was running a fever and by the time they arrived the hospital she was down to 103.7. Her neurologist has put her on seizure medication and she remains sedated for now. Andrea and Joe are in with her waiting for the doctors to come in and give some answers. I am in the waiting room on the computer trying to answer questions but at this time we don't have many.

For those who have asked Will is at my house with Kristi and my two kiddos. We will update as we get the updates.

In His Grip- Sara (Andrea's Sister)

Ella Can Do All Things

Here is a picture from Ella's first day of "camp". For those of you who don't know what I'm talking about, Ella began attending A Child Can Do All Things (ACCDAT). This program is more of a method than a therapy. It's called Conductive Education (CE) and is very popular in Central and Eastern Europe (the training is in Budapest, Hungary). It is also a common practice to help children with disabilities in Canada. Through my friend Krystie I heard about it from a mother's perspective. My friend, Stephanie Poage, has a cousin who runs the local CE organization. Also, our friend Chad Armstrong knew the man who was the President and Founder of ACCDAT. Through all of these separate people, as well as one of our doctors, I realized that we needed to give CE an opportunity to work for Ella...or for Ella to work through CE. We had our evaluation and my first glimpse that Ella might be too far behind came to light. As much as I love and adore my child, I realize that she may not understand the things that we say to her or ask of her. She does follow some commands "sit up", "hands" (she reaches out to grab our hands), "stop biting" (she bites herself...it also is said "Ella, no biting"), "step" (when we are working on walking), "wave" (she waves, sometimes)...I can't think of any others, but I think there may be a few more. However, these aren't enough for her to follow instructions from the conductors at CE...or not yet. We have been given a two week "trial" period to see if Ella will "get it" with the program. It's structured as a 5 week program, 5 days a week, 5 hours a day...however, we are going 4 days a week (because we still have Equest on Thursdays), 3 hours a day...for 2 weeks. They have told us for the last 3 days that Ella complains a lot...but if you knew Ella, you would know that this might be a stretch...Ella VERY rarely complains (I mean, the child doesn't care if she gets shots or hits her head...how could 3 hours of therapy make her gripe). We will get a status report on Friday, so I will tell you what they say about Ella's progress. Personally I want this, but PLEASE pray that God's will be done, and that I feel comfortable with His decision. It really is so hard to know what to do for my little girl...I want her to get better, I pray hard that she will walk and talk and be as typical as God would have her to be...but really, in my heart of hearts...I want her life (and my life) to glorify the Lord.

"I can do all things through Him who strengthens me." Philippians 4:13

Thank you to all of our dear friends who have either prayed for this organization and Ella's involvement, or have actually helped us fund this opportunity. The financial responsibility of Ella's needs are a hard decision as well. Wisdom would be greatly appreciated!

Too many rocks...what to take out??

I think I've mentioned this story before (totally paraphrased...bible study girls are free to correct me):

Okay, so there is this man who decides that he can take a rock to the top of the hill because God asked him to...on his way up the hill with his rock a friend stops him to ask where he's going, when he explains it, the friend asks if he will take his rock up too, since he's going anyway...a few others stop him on his path and either can't carry their own, need him to carry theirs or at least share their burden...as he's making his way up the hill he decides he just can't do it, stops and tells God that the cart is just too heavy to push/pull up the hill and gets mad at God for giving him so much to take on...and God reminds the man that He only gave him one small rock...God tells him to take all of the other rocks out of his cart and as the man starts to push/pull the cart with only the rock that God gave him, he finds it VERY easy to manage the load...and so we are only to take on those things that God gives us.

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." Matthew 11:28-30

So, all of that to say that I really struggle with my calendar. I have SO much on there for Ella or Will, and when I start to add my stuff or Joe's stuff (let alone anything I have promised to anyone else) then I start to feel VERY weighed down. I love to socialize. I love to be involved in everything. I love to know what's going on...and I hate missing out on anything. However, I love my kids, my husband, my sleep and my sanity.

My priorities get mixed up very easily. The hard part is, I'm not having to choose between good and bad things...they are all positive and good things, that may all please the Lord...but I need to make sure that He's the one putting them on my plate.

I may not start clearing off my schedule tomorrow...because I do have current obligations, and it really is rude to back out of things...well, that's my take on it...I'm sure there will be others who disagree (Shelby), but for now...I will just do what was suggested on FB today...Joe and I will pray over my calendar and figure out what is important and necessary for our family to do.

There are different seasons of life...this may just be our busy season.

Poop

Yep, I said it, but Ella did it...in the potty. I have pictures of her sitting on the potty, but I can't find my camera.

Ella starts school/camp tomorrow so I will give you guys an update as soon as we get home tomorrow. Thank you to so many people who have helped us pay for A Child Can Do All Things!!

Horse Show

On Sunday, May 3rd, Ella will be in a horse show at Equest. Here are the details:

Spring Horse Show
Benefiting Equest
Saturday, May 2nd & Sunday, May 3rd (Ella is riding on the 3rd)
Equest Riding Center 3800 Troy Rd. Wylie, TX 75098
One Meal Ticket $8.00 (includes BBQ Sandwich, chips, drink, dessert)

The proceeds for the ticket sales go to Equest Family Committee to help purchase needed items and repairs for Equest.

Let me know by Saturday if you want to attend so that I can make sure and have enough tickets purchased...we have 10 tickets as of right now.

Andrea

RSVP to Evite already

Okay, I currently have 7 (or 8) open Evites. If you don't know what an Evite is...it's an electronic invitation. There are so many great things about Evites...I love them. They probably aren't etiquette yet, but I love them all the same. You can tell when someone gets them (and looks at it) and you can see every persons immediate response. Plus there are always the funny people who like to give their witty one-liners on why they will, or won't, show up at said event.

However, there are always the people who don't reply...WHY NOT?!? You've seen the invitation, you can at least reply "maybe" and let the organizer know what you are waiting on...spouse conversation, babysitter, desire to attend, waiting to see if the person you want to see (or don't want to see) is going. But I think everyone should reply as soon as you get the Evite. I mean, it's bad enough when you don't RSVP to an event and then show up, but isn't it just as rude to see an Evite, not reply and then still show up??

Okay, that's my opinion on that. Most people will tell you I'm the first to reply to Evites, maybe I'm the only person who thinks it's rude not to.

80's Event Cancelled

"A Child Can Do All Things (ACCDAT) would like to thank you for your interest in our “Totally Awesome 80’s Party and Live Auction”. We have had a lot of enthusiasm and support during the planning stages of this party, but due to the current landscape of our economy ACCDAT has decided that it is in the best interest of the organization and its’ patrons to cancel our upcoming event that was scheduled for Saturday, May 9, 2009.

We appreciate your continued support of the ACCDAT organization and our fundraising efforts - your interest and investment in our organization help to create “movement miracles” for our clients that would not be possible without your participation. Please reference our homepage located at: www.accdat.org to obtain additional information on our organization, as well as information on the upcoming fund-raising events we have scheduled for the duration of 2009. Thank you again for your interest, and we look forward to seeing you at our next event!" -ACCDAT

If you would like to donate to ACCDAT as an organization or specifically to Ella's camp:

Option One: Send your check directly to Joe and Andrea made payable to them. They will deposit into an account to be used for Ella's camp and possibly future camps or therapies she needs depending on how much money they receive. If you don't have the address send an email requesting it to mitchells1016@sbcglobal.net

Option Two: Send a check directly to A Child Can Do All Things. Put Ella's name in the memo line. This option is tax deductible, BUT the Mitchell's will only get 50% "credit" toward Ella's camp and the other 50% will go toward the general budget of A Child Can Do All Things per their Donation Policy.

Ella and Will at OCH

He Is Risen!! He Is Risen Indeed!!

Joe read the Easter story to the kids to start off our day before we got ready to go to church. We didn't do Easter baskets or any of the other "bunny" things, we just spent the day at church and with family. Making sure our kids focus on the whole reason we celebrate Easter. Christ our Savior was risen today!!














Brunch with The Roughton Clan

Happy Birthday Catherine

Busy Saturday

New Family to Follow

I have fallen in love with this family. Maybe because they are friends of our dear friend the Kramers, and maybe because I grieved for them as they lost their 8-month-old last Fall (who was the exact same age as Will), but now I fall more in love as I watch Cari write while her husband just had brain surgery. If you'd like, you can read all about them and fall in love with this daughter and son of our Lord...who continue to turn to Him even when the unbearable happens.

Andy and Cari

Third Time on Tonka

Why?

"Total peace, like all answers, may never come. They didn't for Jacob. Nor Job. Some questions remained unanswered even for Jesus, whether in the Garden of Gethsemane or on a Roman cross -- "My God, my God, why have you forsaken me?" (Mark 15:34)"
-Josh and Amy Bottomly, from ashes to africa (Mustang: Tate Publishing, 2008)

My mother in law gave me a book that some family friends wrote. As I am only halfway through the book (it tugs at my heart daily) I came across this section (page 102) and realized that to move forward in my life with Ella, a special needs child, I have to be willing to surrender her and her condition to Him. I have to be willing to lay my selfish desires at the foot of the cross, step back and raise Ella in the way he has instructed me to go. I will never know "why?" and, like the Ashwill's say, the answer probably wouldn't suffice.

I love my daughter. In her three years of life I have learned and grown more than the millions of tears and pain I felt until the day she was born. I hope that I have caught on to some of what God is trying to teach me through her. I hope that I am a better mom to her, and Will, because of the road we have been down.

It isn't easy, but what part of life that makes us better is really easy? I want to be stretched and molded and sculpted...it hurts so badly, but the finished product is so much better than the raw materials. I want to be raw for God. I want to be willing to be used by Him. I hope that Ella's life is not wasted on me...that I see her for not a burden, but as such a gift. I am constantly reminded of how happy she is...95% of the time. The other 5% I think she fakes for attention. She is an angel here on Earth, I'm convinced of it.

Thank you Amy for reminding me that I don't have to be at peace with every moment of every day...as long as I'm willing to surrender those moments to God.

By the way, Josh, I tried to copied your way of siting your sources...not sure an English teacher would grade me well on anything I ever write!

Verse for Today

Joe sends me verses each day and so often they are exactly what I need, and he doesn't even know how much. Here is the passage he sent me today:

Psalm 46 (The Message)

"God is a safe place to hide, ready to help when we need him. We stand fearless at the cliff-edge of doom, courageous in seastorm and earthquake, Before the rush and roar of oceans, the tremors that shift mountains. Jacob-wrestling God fights for us, God-of-Angel-Armies protects us. River fountains splash joy, cooling God's city, this sacred haunt of the Most High. God lives here, the streets are safe, God at your service from crack of dawn.Godless nations rant and rave, kings and kingdoms threaten, but Earth does anything he says. Jacob-wrestling God fights for us, God-of-Angel-Armies protects us. Attention, all! See the marvels of God! He plants flowers and trees all over the earth, Bans war from pole to pole, breaks all the weapons across his knee. "Step out of the traffic! Take a long, loving look at me, your High God, above politics, above everything." Jacob-wrestling God fights for us, God-of-Angel-Armies protects us. "

Second Time on Tonka

Oh Dear Blog, How I Have Missed You.

I drive in my car...all the time, and think of clever, witty and insightful words to say on my blog. By the time I get home, get the kids settled and take care of everything else it seems that the blog takes a backseat, yes, Facebook does tend to come first, but I'm not even there very often.

This week has been trying. Saturday, 8 days ago, Will woke up with a horrible fever and Joe took him to the pediatrician (I owe Joe an apology for what I said in Sunday School this morning...the burden of Will's illness fell on all of us!). Will had a double serious ear-infection. I felt really bad for him, but just assumed the ear infections were just part of raising kids, like diapers, and that soon enough they would out grow them...just a pain for everyone involved for the short term. So, Joe and Will (and I think Ella, because I was one of three baby showers in a row) left the pediatricians office with a script for antibiotics and a sad little boy (Will loves Dr. Nale, but not when he's there to see Dr. Nale!). To make a long and dreadful story a little shorter...his ear infection didn't get any better by Monday so we went back and this time he had to get a shot...same thing on Wednesday, and Thursday....poor kid, rough week. Oddly, and thankfully, he sleeps through the night, but he's been miserable and not himself all day long. You might ask why we haven't done tubes. Mainly because my doctor is very conservative and doesn't think they are necessary. I struggle with this decision and like all choices I make as a parent, I will pray and hope to listen for the right answer. For now he is feeling better and about 75% back to himself.

Ella had her second week of riding horses. She loves it. My dad has gotten to come out the last two weeks and help me film the events...this last time he videoed...some day we will get it on here for you all to see. It's not like I see a huge and drastic change yet, but it's only been 2 sessions and I don't really expect her to jump down off the horse and start running beside him...baby steps, baby steps (boy, would I love for her to take more of those!). She is working very hard in so many aspects. We have found her standing, while leaning on things around the house and she even surprised her Sunday School teachers by showing off for them. She loves praise and accolades. My child's love language is for sure Affirmation! It's cute because during Equest therapy she rides at the same time as another little girl her same exact age...and she has curly hair...and those same pink glasses Ella's used to wear...and they watch each other all the time...it's so precious. We are still actively involved at OCH Baylor and I still see tons of progress. I don't take Ella very often anymore because I use that time to just pay all of my attention to Will. It's hard for so many people to be all about Ella and so many places we go are all about her, I try to give him some special attention. Kristie has been wonderful about taking Ella to therapy and reporting back to me on what they are working on each day. We are finished with ECI as of her birthday (5 weeks from today) so we are starting the transition process to get her into school for next year. It will be a good time for her to interact with other children and learn what is expected in a classroom setting. It's only from 8-11 so it's not so bad. Besides, if we choose to go for #3 in the next year or so it will be nice to have her in school for a couple of hours just to get a nap!

I was talking to a friend of my in-laws and she's a friend's mom...so I guess, really, she's a friend; and we talked about what mine and Joe's story looks like since Ella was born. I wish I could go back and remember more details and feelings, but I think God blocked a lot of them out. As we were talking it made me realize how much I still ache for the dreams that were shattered in that hospital in just a few short hours. Today our Sunday School class talked about carrying each others burdens (thanks Michael) and so many of my friends have. I don't know that I've shared enough lately what my burden is right now. I ache for my daughter to stand on her own perfectly straight. I want her to reach for me the way most children reach for their parents. I want to know why she cries and what I can do to make it better. I am tired of feeding her baby food...I've done it for 2.5 years...I hate baby food. I think I stopped feeding it to Will and forced him to feed himself so I wouldn't have to feed it to one more person. I wonder if I've made Will grow up just a little too fast, to compensate for what Ella can't do. My body aches. Anyone who holds a 27 lbs child can tell you that it's heavy...it seems heavier with Ella because she is dead weight (doesn't carry any of her own weight), doesn't hang on and arches back constantly. A friend noticed that I always hold Will in pictures and Joe always holds Ella, it's because holding her take a huge toll on my body (not that 25 lbs Will is easy at all!!). Honestly, I'm waiting on my super toned arms from these kiddos! I want her to wear a tutu...and not try to eat it. I am so tired of finding bruises and bite marks ALL over her body from where she bites herself or harms herself when she "moves". I would never say she is immobile...just not safe when she's going her way. I hate that I can't take them both outside by myself. If Will runs off I can't leave Ella...and he loves to run off! She has a rough time playing on the ground because she gets of blankets and will eat grass in a moments notice. I hate that she can't wear cute, normal sandals and girlie shoes because her orthotics don't fit in them...she needs bulky shoes to support her feet.

These may sound so trivial to you. Most may think "at least she lived"...and you're right. However, that doesn't make these hurt any less. It doesn't keep my heart from wrenching when Ella has friends her exact age (within days) who are doing things that she will never get to experience. We decided this year that Ella wouldn't have any more birthday parties, except with family...she just doesn't have any friends or playmates. She doesn't really enjoy birthday parties or presents or cake...and that makes me sad. I want it to be easier to give her a bath or to get her dressed. I want her to react and talk and have the wide range of emotions that the rest of us experience. Don't get me wrong...a child who is happy 90% of the time is a HUGE blessing, but the fact that she may not feel makes me sad.

So, there is my heart right now. It really isn't so bad day to day, and we really get used to the bulk of it...but sometimes, when I sit down and really think...it's hard.

I would say tonight, at church, I was hit face-to-face with the realization that Ella may never publicly accept Christ. I know she has seen His face and that He has held her in His lap when we weren't allowed to hold her, but an actual profession of faith may never cross her lips...that breaks my heart. I think they, Ella and our Lord, have a special bond so I'm not worried about her salvation, but I sure would love to watch her walk/roll/crawl/scoot/run down the aisle and claim Him as hers....and the other way around.

Oh, and on April 20th Ella will start a new program call A Child Can Do All Things...we are VERY excited about this new experience.

On a parent note...I got lasik a few weeks ago, and it's been wonderful and marvelous, especially when getting up with kids at night. Joe is sick, and coming down with something, but fighting through it. We have been VERY busy and only had one night last week to just hang out and watch TV together...we know it's only a season...I just hope it goes by quickly.

We love you all, even the ones we don't know...thank you for loving us back.