Lieck Triplets

There's Freedom in Release

2011-09-01T20:22:00.003-05:00

I recently notice a friend's facebook status update "There's freedom in release...". This friend has a child with special needs and although she didn't specify the situation my mind could only imagine the different possible things that she may have had to let go...dreams, expectations, a fight for inclusion, or maybe it was not even related to her child but something personal. Whatever the situation, her update made me think specifically of the dreams and desires for my child I've had to release. I have to let them go (kicking and screaming) and start revealing in the possibilities.

Grace has been taking piano lessons since last October. Because of the affects of cerebral palsy in her upper body, her arms, hands, and fingers are affected. Not severely, but her movement is limited. I had been searching for something that she could get involved in...something that was not therapy related. We have a piano (I play), she loves music...then piano it is. I had this vision of her walking up to the piano and changing people perceptions they had formed of her because she has CP as she begins to play beautiful music. (Honestly I don't know if this would be her dream) She has enjoyed her classes which have mainly been learning music theory. She has yet to play anything recognizable or even play using her entire hand. We had taken the summer off from piano lessons and I had decided to start up again. This time she and Sophia would be taking from the same teacher, back to back lessons.

As I sat through her lesson this week, as hard as I fought it, I realized that this was not the time, and it may never be the time for her to take piano lessons. It's just to hard right now. She can tell you the beats to each note and tell you what a treble clef looks like, but she can't make her hands move along the keyboard. It has also become more difficult as I watch Sophia excel and Grace barely able to peck out middle C. So as I drove home from piano lessons, near tears, I let it go...we would take Grace out of piano lessons. Now this doesn't mean she can't try again later but for now this is not her best use of time or our best use of resources for her.

I've struggled with the decision but it's finally made and there's freedom in release. I'm letting go of this dream...for now.

Hi, Do you have CP? Can we talk about it?

2011-08-10T14:18:00.000-05:00

Through our various therapies, support groups, etc, we know several children with varying degrees of cerebral palsy. All an inspiration. However, we don't know, personally know, any adults with cerebral palsy. I often think about how Grace will be when she grows up and how I have no real personal idea...no one I can call and ask "so what is it like to be an adult with CP?".

About a month ago, me and the kids were at the library, Grace walking with her walker. As we were leaving a man walks up to us. From the his unusual gait, I assumed he had cerebral palsy.

Man: Hi! "Does she have cerebral palsy?" (Points at Grace)
Me: "Yes, she does." (Trying to guide her out the door and up the ramp)
Man: "She looks great! Don't let anyone ever tell you she can't do anything." (his speech affected by CP)
Me: "Thanks so much! We won't." (a little distracted by Sophia questioning his unusual speech...that is a discussion for later)

He then walks to his car parked next to ours in handicapped parking, gets in, and drives off. I was so touched that he would stop and talk with us. It felt kind of like I had gotten a pat on the back and an "everything will be okay".

If I didn't have my three with me (and again Sophia questions), I probably would have ran after him and asked if I could buy him a coffee and pick his brain. Hopefully next time I will be better prepared.

Yesterday while at the grocery store, looking for an open register, a woman waved me over saying "Ma'am, I can get you right here." She then turned to walk to the register. There it was...the unusual gait! Did she have cerebral palsy? Can I ask her about? Will she be offended? I stood there very conflicted about what to do as she ran my grocery items across the scanner. I didn't ask. I was too afraid. Of what...what would she say...would she want to talk with me about it? Will Grace get those questions...or just looks of sympathy or even disgust at times.

Maybe I'll get another chance. What should I do? What would you do?

Talkin' about Walkin'

2011-08-05T15:52:00.001-05:00

Since we have been home from St. Louis, I have had so many questions from friends and family about Grace's mood, behavior, feelings, etc since the surgery. "What does she think about the surgery?" "Does she say her body feels different to her?" "Is she upset that she can't get around as well as she could before the surgery?" "How does she feel about what is happening?" etc, etc.

And the answers are...I don't know. She doesn't talk about any of this...at least with me. I have explained to her, both before and after the surgery, what was going to happen and why we were doing this. I have asked her many times about how she feels about having the surgery...does her body feel different, does she understand why she had the surgery, does she have any questionas, and on and on. No response, or at least no direct response to my questions. I'm not sure how to feels about what she has gone through because she has a great attitude, like she always did before, and works really hard during her physical therapy (as long as it is not me trying to get her to do it) and generally seems like her old self...just physically weaker. And physically she is doing much better than we had thought at only 1 1/2 weeks out of surgery.

I would be interested to know what types of interactions other moms of children with special needs have when there is some kind of physical change like we had. What am I supposed to think? She is not talking about walking.

Regrets??

2011-08-01T16:59:00.000-05:00

This morning, our first morning back from Grace's rhizotomy in St Louis, I immediately starting Grace's stretching and strengthening routine and I was immediately frustrated...she is so weak. Of course she is, you are probably thinking, she just had a major surgery!! Now, it's not that I'm typically an instant gratification kind of girl but when will the "miracles" we were promised begin (again no patience). Part of the problem is the "no regrets" policy I have tried to follow during this journey with three very premature babies.

Once the decision was made to continue with the surgery, I was 100% (okay really 99%) sure the SDR was the right thing to do, but there is always that .01% or 1% doubt factor...isn't there. My doubts were increased a small percentage about a month ago when we went for a routine check-up with our neurologist in Dallas. I had not told him we were considering the SDR until that visit. He is not a big fan of the selective dorsal rhizotomy. I don't believe he has seen that many patients who have had SDR (both before and after) but he didn't think that removing the spasticity would help Grace walk..."most CP kids need the spasticity to walk" was his response. I explained to him that we had been considering this procedure for about 3 years, had done our research, and had talked to several parents of children who had the rhizotomy. None of these parents have had any regrets. Dr. X then responded (and I paraphrase) "You will never hear a parent say they regret making such a big decision for their child. They don't ever want to feel they have done the wrong thing for them." I was speechless...but REALLY?! Do we become so brainwashed or narcissistic to think that every decision we make for our child is the right one? Do we really never make any mistakes with respects to our children?

Have we made a mistake? I don't think so at this point and can't really know until we are at least six months out. So, when you ask me at that point what will I say and will you believe me?

Day 3 Post Surgery

2011-07-29T16:02:00.000-05:00

There wasn't much to report days 1 and 2 after Grace's SDR. Just lots of sleep and pain management with a little bit of whininess because she couldn't get out of bed and had to lie completely flat. Pretty much what we were told to expect. One thing, however I did not expect was the sense of peace that I had about what my daughter had just gone through. Although peaceful, I did feel a bit uncomfortable about this calmness seeing that I have spent the past few months sleepless, overly fretting causing serious chest pains and in a continual search for validation that a trip to St. Louis would be life changing for my daughter...in a good way. There were lots of conversations with God and second guessing when Grace's health would fluctuate or she just didn't seem herself. But as we loaded the van for our journey, I begin to find....well, the only way to describe it...peace. Pour out your heart like water before the face of the Lord. Lift your hands toward Him for the life of your young children. Lamentations 2:19

Now there is no way of knowing whether this has been the best decision of Grace's life on day 3 of post surgery, but I do know as the physical therapist moved Grace's feet and legs in ways that were never possible before, I was near tears and crying out in thanksgiving to our God, who has the ultimate control (how I somehow manage to forget this sometimes if beyond me). There is so much work ahead of her (and us) but I truly now feel where we had once felt stalled in her progress, we have given Grace a chance to move forward. A bit stressed about what is involved once we get home but SO excited for the possibilities. I can do all things through Christ who strengthens me. Philippians 4:13

ps...wanted to post some cute pics of Grace up and about but can't figure out how to get them from the camera on my iphone to my email to blogger. sigh

And From St Louis

2011-07-27T09:43:00.002-05:00

I've been absent for quite a while. Many times thinking I need to get back to blogging but often too exhausted after the kids get to bed to form coherent thoughts. There has, obviously, been a lot going on and I will update you on some of the "other stuff" later, but right now I want to tell you about St Louis.

For the past three years the words "selective dorsal rhizotomy" or "SDR" has been in the back of my mind, resurfacing occasionally. Three years ago we had decided that SDR was not where we wanted to go at that time but knew it would be something to reconsider later. Well, it's later and we are in St Louis. Why St Louis? After doing much research and holding many conversations with doctors and other parents and fervent prayer, we decided that we wanted to put our daughter in the very capable hands of Dr. Park at St. Louis Children's Hospital. Although SDR is performed in other hospital (including one in Dallas), we wanted an expert...the doctor who has performed over 2,000 of these "permanent" spinal procedures.

What is SDR? Because any explanation I could provide would be extremely simplistic, I will direct you to very thorough and detailed information provided by St. Louis Children's Hospital - About Selective Dorsal Rhizotomy. In VERY simple terms this procedure involves cutting the spastic nerves thereby eliminating the spasticity that limits much of Grace's movement. This procedure involves exposing these nerves at the spinal cord and permanently removing any connection. Pretty scary, if you ask me.

So...how will this help Grace? Our hope is that by removing the spasticity, Grace will eventually be able to walk independently, as well as eliminate any further orthopedic type surgeries that are often required because the spasticity can cause bones, etc to form incorrectly. (again see the hospital's explanation before I start sounding really stupid)

The surgery was performed yesterday (Tuesday) and she is currently in the PICU recovering on strong pain medication and valium (for muscle spasms) and we will be moved to a regular room today. She will get out of bed briefly tomorrow and then will have physical therapy on Friday and Saturday before she is released on Sunday. THEN THE REAL WORK BEGINS!!! The surgery is not a quick fix. It must be followed by strenuous physical therapy. We basically need to now strengthen and teach Grace to use the muscles previously under utilized due to the spasticity.

I had never been to St. Louis before and never envisioned seeing the Arch under these circumstances, but I'm so thankful that we are here and that we are doing everything we can to help Grace become independent. Have we made the right decision? Only time will tell.

Updates to follow which will include before and after. (btw...we can move her feet and legs so much easier now...it's amazing)

Have You Heard?

2011-02-01T11:04:00.000-06:00

I've been absent for a while....busy, unfocused, or really just not wanting to write it all down. Oh don't get me wrong, it really hasn't all been that bad...just a little overwhelming at times.

In Bible Study Fellowship (BSF) this year, we are studying the book of Isaiah. I was really excited to begin this study because I love the prophecy and history. What I didn't think about was that God would remind me through this study just how great, powerful and loving He is. He has it all under control and I am so thankful because I sure don't.

"Have you never heard?
Have you never understood?
The Lord is the everlasting God,
the Creator of all the earth.
He never grows weak or weary.
No one can measure the depths of his understanding.
He gives power to the weak
and strength to the powerless.
Even youths will become weak and tired,
and young men will fall in exhaustion"
Isaiah 40:28-30

Just Another Weird Dream.

2010-10-22T15:01:00.000-05:00

A few nights ago I had a very unsettling dream. Actually I have quite a few of those. In this dream I was alone with my children and had to find a new place to live. As I am searching for a new home, I notice I only have Mack and Sophia with me. Grace was not there. We look at several places always keeping in mind that we had special circumstances and needed accessibility. But Grace was not there.

I then realize that I have left Grace at home all alone. We get home and Grace is there. She's okay and has managed to work her way across the floor. Why did I leave her? Why was I looking for a new place to live?

I told a friend, who knows me really well, about this dream. She said that it included many of my fears...being alone and leaving Grace alone and not having anyone to care for her. What do you think? I hate these dreams.

My Status

2010-10-12T16:00:00.001-05:00

My kids are now 5 years old. My 5 year old daughter was diagnosed with cerebral palsy at about 18 months of age...3 1/2 years ago. In those 3 1/2 years there have been tears but more than that, there has been a focus to help my daughter any way I could. Therefore, the drive outweighed, and more times than not. overcame the tears and weariness. I felt and appeared strong. I was focused. I was capable. I was ready for anything.

What has happened over the past month...........
The tears come more readily and I often have to fight them off in public.
It takes me longer to make phone calls to find specialists, therapists, doctors, etc.
I don't all friends back.
I don't want to help with sit-ups and bridges...her many exercises.
I don't feel strong. I just feel tired. I feel weary. I don't want to smile through it all. I want to scream "my daughter has a disability and I don't know what to do anymore."

What is going to happen?

It will all come back...the drive, the focus, the answers. I know...I hope. But for now...I'll just get by and ask my Father for a lot of help.

Riding the Short Bus

2010-08-23T09:35:00.000-05:00

A long time ago, when I was in school, I remember other kids saying things like "That kid is so (insert derogatory adjective), he rides the short bus." or "I bet he/she rides the short bus." Since I grew up in a very small town, there were many of us who rode a short bus to school or to athletic events, but I knew that there was something no so great about "riding the short bus" when used in that context and that is was said in a mean-spirited way. However, I wasn't exactly sure why people associated mental or physical disabilities with a bus size.

Well, now that I'm grown up, my daughter rides the short bus. My daughter has a disability. She has to have someone help her on and off the bus. Every other child on the bus also has some type of disability (physical or otherwise). It makes me wonder if my daughter will now be made fun of because she really does ride the short bus. I think I hate the short bus, but I love the kids who ride it.

She's Not Normal

2010-08-17T21:59:00.004-05:00

"You know, I think you should just treat her like a normal child." is said

"Well, I'm sure you're right. I really try to do that." is the reply.

BUT...what I really want to say is...

"So, you think I should treat my child with cerebral palsy like a normal child, because your experience with three "typical" children gives you enough knowledge to be an expert in the area of special needs. If she was a normal child then, we wouldn't have therapy four times a week and praying we can pay for it all. Instead we would have soccer, baseball and ballet to worry about. If she was normal, I wouldn't still be trying to potty train my 5 year old child and have boxes of pull-ups in the closet. If she was normal, I wouldn't be spending time and a lot of money to get the cutest shoes I can find, that will fit over AFOs. If she was normal, we wouldn't be spending time looking for just the right color for the wheelchair so that maybe her friends might think it is just a little bit cool and not just weird. If she was normal, my back wouldn't ache all the time because I wouldn't have to lift her and hold her and try to position her so that she can have a semi-normal experience with her siblings and peers. If she was normal, maybe you would treat her that way."

Thanks! I needed that!

Helpless

2010-08-12T11:58:00.004-05:00

Yesterday we (the trips and I) went to the Dallas World Aquarium with some friends. If you haven't been, it is really worth the trip. I bit expensive for my taste but really well done.

As we started walking through the exhibits, I noticed Grace wasn't herself. This was our first outing in her new wheelchair. She wasn't talking, pointing or even really looking around at the animals. I tried to direct her attention and asked lots of questions but there was just no interest...her eyes just weren't shining like they always are. I started becoming concerned...Is she sick? Is she sad? Is the wheelchair uncomfortable? In the meantime, Sophia, Mack and our friend Matthew were jumping up and down with so much excited about the animals we were seeing.

I pulled her aside from the excitement and tried to talk with her. "Grace are you okay? What is wrong?" Her only reply was "Hold me." So I took her out of the wheelchair and she began sobbing. Big tears...big sobs. I was so confused. "I want to go home" she said. I was at a loss. Does she realize how different she is? Does the wheelchair make it that much more evident to her? It was all I could do to not start sobbing myself. I was helpless.

And From Ambergris Caye

2010-06-10T09:01:00.003-05:00

It has been so interesting to me how my perspective on life in general has changed since Grace's CP diagnosis. Our life is not as we imagined. It seems now that I view places and occasions based on accessibility...can Grace do that...can we get her there...how will it work??

Abe and I are currently in Belize celebrating our 10 year anniversary...our first trip together since the birth of our triplets. We are staying on a beautiful island and have seen many families with their children. My thoughts of bringing our triplets, specifically Grace, here actually started as we boardeded a very small plane from the main land to the island. How would we get Grace's wheelchair on this plane? Then as we landed, how would Grace do with her walker on the very sandy and bumpy streets?

Yesterday we went on our first scuba dive in Belize. I thought of how much Mack would love seeing all the sea creatures he loves to read about about, up close and personal. Then as we donned our scuba gear, I realized that Grace will probably never be able to scuba dive. Will she ever be able to pat a sea turtle?

This morning over coffee, I watched a family with 3 kids and listened as they talked about the activities of their day. Will she ever snorkel or kayak? Will Grace ever be able to see Mayan ruins? Will she ever be able to cave tube?

Dear God, I prayed, how do I as her mother make sure she get to live to the fullest? Please don't let me fail.

Wheelchair Weary

2010-05-11T11:12:00.005-05:00

About a month ago we ordered a wheelchair for Grace. The wheelchair we picked will look much like the one above but is hot pink (of course). We had been putting it off this decision as long as we could but as we may be losing Medicaid soon, we decided it was time. I had been dreading this moment and praying for a miracle so that it would never come. Although Grace is still progressing and we are still hopeful that she will walk unassisted one day, it is inevitable that a wheelchair will be needed for long distances. I guess this is just one more detour from from denial that my daughter has CP and will always require some kind of assistance.

I guess I've been thinking a lot about the wheelchair and how it will affect Grace and our lives, because last night I dreamed I was in a wheelchair. I was not with anyone I knew but I was in place that we frequent. The only people that acknowledged me where those also in wheelchairs. Everyone else just ignored me...or if they looked at me, they would look away. How will this wheelchair exactly change our lives? I guess we'll find out soon.

Yeah! Just What She Said!

2010-05-01T21:00:00.005-05:00

I've done it before and I'm doing it again....I'm deferring to Ellen's blog. She is a wonderful writer and has an amazing son that she loves to write about. Just change "him" to "her" and insert Grace's name and you have my child and our situation. Ellen, you have said it perfectly...

My Child Has Special Needs but Please Don't Treat Him Special

Oh, and Ellen, I love that Max!!

So Many Unknowns

2010-05-01T18:31:00.000-05:00

Grace at 4 1/2 years old weighs only about 27 pounds and can still be lifted and carried with reasonable ease. However, it is becoming more difficult and I defer to Abe to carry her much more than I used to.

This past weekend we went to a birthday party and much like most children's birthday parties, festivals, etc, there was a bounce house. Big hit for the kids and Grace wanted to be right in the middle of it all, as she always does. We have also been to several parties at Pump It Up or similar venues, where Grace wants to climb, slide and jump with her friends. Abe and I always do our best to facilitate this for her but it is starting to become increasingly harder and there are only so many of these things we can do with her.

Today, we had some friends at our house to play and they all wanted to get in the playhouse. Grace wanted to be right there with them. I couldn't get into the house with all the kids, so I did my best to help her through the door and then hung onto her shirt to keep her from falling. I can't believe she didn't and she had so much fun with the others.

How long will we be able to do this? Will she ever be able to do these things herself? What do we do when she is too big for us to carry? What will I tell her when she asks to play with the others and because of her physical limitations, she cannot? I can barely stand to think about it.

You see, Grace is the most outgoing and friendly of my children. Will her personality change? Will she want to hide rather than entice others to talk with her? Will I lose my sweet Grace?

Mommy, Please Stay With Me

2010-04-23T13:53:00.003-05:00

This week Grace started another session of "intensive therapy" at Beginning Steps Therapy. (sorry the photos are so bad, my camera is broken so I'm having to use my phone) She will go everyday for three weeks for three hours each session. This is her third time to do this and this time her sessions are from 1:00-4:00. The first time she did this I stayed most days for all three hours. I was able to do this because it was in the morning and Mack and Sophia were in school. This time however, I am not able to stay every day. Most days I have to meet Mack and Sophia back at the house by 2:00 and other days we have things to get done.

"Mommy, will you stay and watch me today?", Grace will ask me most days and when I can't she cries. But only for a little while. She loves Lissa, her therapist, and I trust her completely. She seems perfectly content when I pick her up but I still feel guilty. I especially feel guilty when I have to leave so I can take Sophia to dance lessons, somewhere I know Grace would love to be and will never really fit in. One day this week, as I was leaving I told Grace I had to take Sophia to dance lessons and I felt bad as if I shouldn't have told her and that Sophia needs to change out her leotard before we pick Grace up. But somehow hiding it from her also feels wrong. What would you do?

When I've Almost Given Up

2010-04-21T10:30:00.003-05:00

As Mindy Smith sings "When I've almost given up, something about you draws me back again"; when I almost think I can't do it anymore, there are some very special people that keep me going...all those wonderful moms of children with special needs out there. You know your life and the life of your child will not be as you had hoped or expected. Your struggles will not include picking out soccer shoes but picking out shoes that fit over those awful AFOs. Your concerns do not include whether your child will make the cheerleading squad or debate team; you just wonder if they will ever speak...or see...or hear. However you still find the joy and the triumphs and you still manage to encourage others along the way. I really needed to go on your blogs today and see the sun.

Thank you...you all know who you are.

See Grace Walk the Runway

2010-04-11T21:26:00.002-05:00

On March 30, Grace and Sophia participated in the Spring Fashion Show fundraiser for A Child Can Do All Things. Well, I guess I should say Grace participated. Sophia did really well during the rehearsal but when it was show time, she remained frozen under the Barney's New York sign clutching her Ariel doll. Grace however, did great!

During the fashion show last year, I carried Grace down the runway and this year she was able to walk alone with her walker! She was so proud...just see the smile on her face in the news footage below. (she's the blond in the white pants and brown shirt)

Charity Helps Young Palsy Patients Walk Runway

Grace has participated in ACCDAT camps over the 2 1/2 years and we attribute much of her progress to this amazing program and her hard work.

All About Grace

2010-03-10T10:51:00.003-06:00

I haven't written much about Grace lately. Not because there is nothing going on but just because I can seem to find the time to sit down and put it all into words.

As most of you know, Grace was in the hospital for six days in the middle of February. She handled it like she does most things...like a champ, and is doing great now. She goes through the therapies, doctors visits, surgeries, etc with a smile and a demand to see the Wiggles. There is rarely any complaining. If any, it's after a long day of being in her AFOs. I can hear the velcro rip as she tries to take them off. After a brief hiatus from therapies, we are back at it.

Grace did a four-week intensive session in Jan-Feb with our favorite PT Lissa (http://beginningstepstherapy.com/default.aspx) and is scheduled to start another one on April 19. In the meantime, she has OT twice a week and PT twice a week at the house. Thank goodness we don't have to be on the road for this anymore. She is also attending pre-school, when not in intensive therapy, with Mack and Sophia. She loves school and although she struggles still with writing, she's doing very well and is quite popular with her schoolmates. She uses a walker at school and writes on an easel which is different from every other child in the school, but is still a big part of class discussions and can hang with the best of them. At home, we walk with a walker and crawl a bit. She can now get out of her toddler bed onto the floor but we are still working on making the transition onto the floor for crawling.

As I have pointed out earlier Grace has a wonderful attitude and can light up any room but I wonder if this will change as she becomes more involved in the "world". A few mornings ago she would not get out of bed. I asked her why and she looked at me so sadly and said "Mom, I can't. I can't walk." It was all I could do not to break down in tears but I sat beside her on the bed and we talked a bit. Not specifically about her abilities or inabilities just about us and our relationship. I hope that we can always talk about everything. I, of course, did not ask her, but I often wonder...does she, will she blame me? Will she always love me the way I love her?

Focus Your Eyes! Focus Your Mind! Focus Your Body!

2010-03-04T20:46:00.002-06:00

Today Mack finished his third day of his new martial arts class. They first day was kind of rough. He really didn't want to participate. But today he was really into it. The kids are so cute in their gees and belts. I love it when the class starts, they all stand at attention and look at the instructor and say loudly and proudly..."Focus Your Eyes! Focus Your Mind! Focus Your Body!" I'm thinking about yelling that every morning when I get up...it couldn't hurt could it ;)

Princess Play

2010-02-26T14:19:00.006-06:00

Early this week we had our neighbor Evie over to play. As usual, they wanted to play dress up. They were all princesses except Grace who wanted to just be a "cool gul (girl)" Although Mack looks like a princess he said he was really a prince...I have really got to get him a Prince outfit. I was assigned to be the witch (Thank you Disney movies!). Luckily no one was there to take my photo but I actually looked kind of groovy...floppy hat, big green glasses and a boa (they dressed me). It was a little disconcerting at times much they loved bossing me around always calling me Witch, but I played along hoping they don't decide to call me that when we aren't playing.

Wordless Wednesday

2010-02-24T08:11:00.001-06:00

Yep, That's My Boy

2010-02-11T09:02:00.001-06:00

I think we need to find some boys to play with.

Time to Dance

2010-01-27T19:00:00.001-06:00

Monday was Sophia's first day of dance lessons. I know this is not that big of a deal...most little girls take dance lessons at one time or another, but it was a really big deal to me. You see, when I gave birth to my two beautiful twin daughters, I envisioned two little girls in tutus...two dancers. The thought of leaving Grace behind crushed me.

At first, I searched and searched for a dance class that would include Grace. Whether she would be helped by me or someone else, I wanted her to be included. We spend so much time, energy and money on Grace's therapies, it just seemed to make sense that she would be included in this. I didn't want her to be left out of the "fun stuff".

I have finally come to the realization that although Grace and Sophia look identical, and not considering the fact the Grace has cerebral palsy, they are not identical. They are two separate individuals with two separate journeys...and no one should be left behind. So...Sophia loves to dance and she is now in a dance class. It is our afternoon...time that just Sophia and I get to be together, just the two of us. I love this time...and I love my girls.

Grace has of course, been saying "Mommy I want to go to dance lessons" and I tell her "Grace there will be time for that later"...and there will be. I plan on starting her in the Fall.

Time and Attention

2010-01-22T19:44:00.002-06:00

Today was beautiful. We played outside with some neighborhood friends. We live on such a great street. There are some wonderful families and it is always so much fun. We rode bicycles and tricycles, wrote with chalk on the sidewalk, played hide-and-go-seek and just hung out with our friends. When it was finally time to go in, we gathered, bikes, chalk, blankets and left-over snacks and went inside to prepare for dinner. I placed Grace on the front steps as I was getting everything inside. She sat there quietly waiting to be walked inside but I noticed after a few minutes how she was trying to inch herself over so she could pull the leaves on the hedges that poked through the railing on the steps. I watched as she leaned as far as she could, catching herself if she started to fall. Mack and Sophie helped gather our items and talked about dinner as we made plans. I wondered if she felt left out. Did she feel sad that we were all running about and she was left alone on the steps? Did she mind this or was her only focus on how many leaves she could grab. Should I do things differently? Should I have helped her picked up the toys/cups/bicycle helmets and then help her walk inside and place them in there respective places? Should I slow down and payed more attention? There seems to never be enough time or attention....

Wordless Wednesday

2010-01-20T06:00:00.001-06:00

Lil' Mack Freestylin"

2010-01-19T10:33:00.002-06:00

Grace got a cool keyboard for Christmas (thanks Jerry and Neville..it's hit) with a mic. Mack is quite the rapper. Listen to the words...there is a good message.

Wordless Wednesday

2010-01-13T06:00:00.002-06:00

Bad Dreams

2010-01-06T16:12:00.002-06:00

Last night, around 11:00, Grace woke up crying and screaming. It's pretty normal for her to wake up a few times each night but this sounded different. I went in and picked her up, trying to console her. She was crying and would not open her eyes or respond to my questions. It seemed that she was having a bad dream and couldn't wake up. I took her in my room and held her until she calmed...she never opened her eyes. Was it a bad dream? What was it about? Does she dream the same as my other two children? When she dreams, do her nightmares include her physical limitations and her inability to move the way she wants? Will this become a part of her nightmares as she gets older? I know it is part of mine....

Hey! You're Just Like Me!

2009-12-31T15:23:00.003-06:00

Earlier today I was at Central Market gathering a few items for our impromptu, kid-friendly New Year's Eve shin-dig at our house. As I was preparing to pay I noticed the woman and child behind me in line. The child was in a stroller and may have been about 7 or 8 years old. The little girl appeared to have cerebral palsy and was asking her mother in an affected voice to hurry up. I immediately wanted to bond with this woman and her daughter. I longed to run up, hug them both and tell them that I also had a daughter with cerebral palsy...that I was just like them...that my daughter, who is old enough to walk, may never...that we get curious looks while at the grocery store...that we are trying to get by the best that we can.

I was afraid that this may have come across as rude or intrusive, so I didn't say anything. On my way out the door, I looked back and almost went back but didn't. Should I have? How would you feel?

Ice Skating Princess

2009-12-18T11:19:00.005-06:00

Kat Kat decided she wanted to do something special with each one of the triplets on their own. She took Mack to see the trains at North Park and took Sophie ice skating (Grace gets her trip later). To my surprise, Sophie picked ice skating for her trip. We have never been and I'm not sure how she knows about it but that's what she wanted to do. I was very excited for her but a bit sad...someone else would get to do this with her first. I guess I feel guilty that I don't spend more one-on-one time with each child. Grace gets her one-on-one time through therapies only and the other two just don't get any. I'm so thankful for Kat...we are so blessed to have her in our lives but I really need to start being a better mommy...I need to start spending time alone with each...just how do I do it...I feel I am spread so thin....

Maybe next year

Hello 9-1-1

2009-12-17T15:21:00.002-06:00

Monday afternoon we were playing with our friend Evie in the backyard. Four 4-years olds and lots of fun. The kids were pretending to make food with sticks, leaves, flowers and various nuts berries. I was helping them gather the "goods". They made a beautiful spaghetti soup and we called it a day so I could go in and make a real dinner. The kids were watching television quietly and then I hear Mack say "help me, help me". Not being a mom that jumps to the worst conclusion automatically, I calmly picked him up and started talking to him. He then started shaking and turning blue and was really warm. He said his tummy hurt and after asking, I discovered that he had been eating the flowers and berries that I specifically told them NOT TO EAT! THEN I panicked and called 9-1-1. The paramedics came and the neighbors came running over. Needless to say, all is well now and we don't know exactly what happened because the paramedics said he would need to ingest a large amount of berries to get really sick...maybe it was the pecans...and he never threw up. I slept (didn't sleep) with Mack that night and just made sure he was breathing every few minutes. Our first 9-1-1 call and hopefully our last.

The Famous Spaghetti Soup

Hello Lover

2009-12-04T11:34:00.005-06:00

I'm in love!! And no, Shelly, Kat and Coleen, not with Robert Pattinson! And not with Edgar Allan Poe pictured below...even though he has that mysterious tortured soul thing going on that I always liked.

I am in love with my very own sweet Kindle. Little did I know when he/she/it arrived in my mailbox as a birthday gift from my sis, bro, mom, etal, that I would be so smitten and that we would become so close. I long for the times when it is completely quiet and Kindle can rest in my hands sending me pieces of shocking, funny, sad, dramatic literature...we laugh and we cry. I am even thinking all the holiday travel will not be so bad now because I have Kindle. I can read while Abe drives and if I finish a book...I can just download another!!!! As an added bonus there are even some of the classics that you can get for free!!!! Free I tell you!! I have even purchased the cutes reversible orange/blue case and light. All is right with the world when I am with my Kindle.

So, if there is someone you really love, get them a Kindle for Christmas...unless you get jealous ;)

Muck and Mire

2009-12-01T16:42:00.006-06:00

I think I'm finally coming out of my funk...at least let's hope so for my husband's sake. I can't really explain why, but I tend to get a little out of sorts as the holidays approach. I become overwhelmed with all the activities and expectations...mine and others. My routine is messed up. I can never find the perfect gifts. I always spend too much money. There is a lot of packing and unpacking as we travel about. I miss my dad. We are considering scooters for Mack and Sophia for Christmas, but what about Grace. It all just culminates in one big pile of funk. Abe just doesn't understand..."we have so much to be thankful for"..."we are so blessed" he continues to remind me. YES I KNOW!!! I know that we are very blessed but let me work through my funk. It's the only way, just let me deal with it.

In the midst of all my mire, my kids continue to grow and amaze me. They continue to love me unconditionally while I feel at my most unloveable. They are so excited about Christmas and everything it brings...Jesus, Santa, lights, cookies and of course, presents. Grace continues to get stronger everyday even though I am quite lax on her exercise routine. She is currently standing 20 seconds unassisted!! Here she is standing with a little help from the sofa. Thank you God for the blessings....I'm starting to see the light.

I Know It's Early But...

2009-11-22T19:57:00.002-06:00

we decorated our Christmas tree tonight. Typically, I need to eat some turkey before I can even think about it, but we are going to be in Oklahoma next weekend and we were feeling "the spirit". As is the tradition, Kat Kat was there and Abe made hot chocolate (even though it was 70 degrees today). We pulled out the Santa hats that are now too small and all the books about Jesus' birth. The kids were so excited and I could barely contain them. We learned what the word "fragile" means and only broke one ornament (actually I did it) as opposed to four that Mack broke last year. The trio are all so proud of their work and even though there is a heavy concentration of ornaments on the bottom of the tree, it is perfect!

It's All About the Potty

2009-11-18T17:56:00.003-06:00

At one time, I had thought that Grace would be the first of the triplets to be potty trained. About a year ago, she was telling us when she needed to potty and we were well on our way to completing the Tinkle fairy chart.

Well, it is a year later, Grace is 4 and is not potty trained. We have tried everything. Sticker charts, rewards, the threat of wearing diapers to college...we have even tried to shame her by continually repeating..,"You are the only one in your class still in diapers and you may be kicked out of pre-school".

I have thought at times that maybe she is hindered by the cp...maybe she doesn't really know when she needs to use the bathroom, but I'm not sure I believe that. Why would she tell us sometimes and others not. I honestly think that she is fine with the way things are and doesn't mind using the toilet when she just "feels like it".

We now have the cool toilet seat with the toddler seat built it!! Since Grace is now able to sit up on her own, we purchased this in hopes that she would be able to sit on the smaller seat on the big potty and no longer have to use the "baby potty". It's a hit...she loves sitting on the "white potty" and is even now using it properly (and not just a place to read :) She also likes that she has easy access to the toilet paper, because you can never use too much. Wish us luck...we may be on our way to being totally diaper free!!!!

Well, I love YOU!

2009-11-06T14:36:00.002-06:00

Although Grace isn't moving around like a typical 4 year old, she is developing some of the typical avoidance tactics when it comes to doing what mommy wants her to do. Her exercises at home have become quite the battle. I have had to become really creative in motivating her to walk, stand, kneel with high knees, etc. She thinks it is so funny to tell me "No!" and then assure me that "I don't love you." Ouch!!! That hurts!! Does she really not love me? Where does that come from??? Where did she learn to say that? Does she resent that I "make" her do therapies and exercises? Will she blame me for everything?

Grace, no matter what...I love YOU and I always will.

Grace and her beloved NiNi

School Pics

2009-11-06T10:17:00.000-06:00

Hey Guys...I'm Over Here

2009-10-27T10:01:00.003-06:00

"Hey guys!! I want to play with you!" Grace yells from the sofa, as Mack and Sophia are building castles on the floor. This request is now being made at least once a day along with...I want to run with you Mack...I want to help you Soph...etc.

Grace is still not very mobile. She can crawl and get into sitting (which is huge) but getting somewhere in a hurry or walking without assistance is not happening, so many times Mack and Sophia have moved on to something else or quite honestly, are not interested in waiting on her. This used to break my heart but now I look at Grace and see that she doesn't seem upset...she seems to let it all just roll off her back and she also moves onto something else. I think she is so much more resilient than her mommy.

There are also those times however, that Mack and Sophie do include her...they want to play with her and Grace is never as happy as those times. She loves her brother and sister and any kind of contact she savors. There was that morning that I went into their room and Mack had crawled into Grace's bed and is reading to her. Those are the best times...those are the times that I see how much they love each otherand those are they times I savor (I was so happy, I didn't get a photo...dangit!!)

I Need To Take My Temperature...MYSELF

2009-10-26T15:01:00.004-06:00

Last week was VERY long. Sophie had pneumonia, Mack and Abe both had H1N1 and I had many sleepless nights. Somehow, Grace and I have managed to stay well. Grace is usually the first to get everything and has the hardest time dealing with illness, so we are so thankful she is flu-free right now. We had gotten the regular flu and first does of the H1N1 vaccinations but not soon enough. For a few days Mack and Sophie (and Abe) had pretty high temperatures, so I always had the forehead thermometer ready and used it very often. I think Grace must have felt left out because now she is always wanting to take her temperature..."MYSELF"

btw...I am thinking maybe the kids should be taking probiotics. What do you think? What kind should we do?

I Can Do It Myself

2009-10-20T16:46:00.003-05:00

The older and stronger Grace gets, the more independent she wants to be. She often says "I can do it myself" or "Let me do it!". If she succeeds, she love to exclaim "Look mommy!! I did it!!". Many times however, she works on the task for a while and then says "Mommy, how do you do it?" or "Will you help me?".

If she eventually asks for help, there is no frustration or defeat in her voice. She just wants help...either assistance or (mostly) more instruction...simple as that. I love her independent spirit and know that she will need it as others discover her disabilities and want to help her with everything or even shun her. But I often wonder if that independence will subside as she discovers her limitations...will she become frustrated or defeated or will she adjust and be her happy, cheerful self. As she is now becoming confident in trying things, I wonder if that will be taken away too soon. Will people always insist on helping...not to be harmful but because the want it done faster or just want to be helpful (I am guilty of this)? Will she lose that confidence and see herself as so many people will...just a disability?

Trying to screw the lid on.

Realizing she can't do it without help.

Sophie and Grace Meet Barbie...sort of

2009-10-07T06:30:00.002-05:00

We went to see Barbie Saturday at Potty Barn Kids. Since I could not describe the adventure any better than Kat, I will defer to her....Check it out!

Thoughts on Therapy

2009-10-06T10:42:00.005-05:00

A friend said to me yesterday..."If someone told me that it would help my child, I would hang them upside down in the backyard by their toenails." That seemed to sum it up for me. We do what we can, no matter the cost, no matter the time commitment. We love our children so much...we want to cure them...make them well...make them "normal"...make them happy.

We haven't done it all, but we have done a lot. Grace has done occupational therapy, physical therapy, hippotherapy, osteopathic manipulative therapy, conductive education, PERCS, pilates, yoga. We've spent lots of money on AFOs, orthopedic shoes, standers, walkers, special benches and seats and other equipment. We've traveled, gone into debt, and as ashamed as I am to admit it, we have ignored our other children's needs. I've even felt guilty that we haven't done other things, such as hyperbaric therapy, ABR, etc...very expensive therapies. I feel like I am in the tornado looking for the wizard that can solve our problems...or what I think are our problems...Grace's CP.

I received an email a few weeks ago from another mother. A mother with a child that has special needs. A mother I have not met, but have corresponded with via email. She is amazing and I follow her blog and often her advice. I cry with her and I rejoice with our children's accomplishments.

With her permission, I have taken excerpts from her message to me (her word in italics).

...But I wonder.... Is all of the therapy really helping make Grace the best she can be? If it is, than you should continue to pursue it aggressively, as you are. But in my own situation, I feel like therapy is overrated. I have felt in the past like maybe I am not doing enough, but at the end of the day I just decided that my goal will be to help my child have as fulfilling and happy a life as she can...and I just don't think all the therapy really enriches her life that much.

We do therapy twice a week. Once it's traditional PT at home with a private therapist, and once it's hippotherapy. Both are paid for through our health insurance. We have never paid out of pocket for any therapies. To be completely honest, part of that is because I am a skeptic by nature, and I really wonder how much any of those therapies work in the long run. I do believe that a lot of them make noticeable difference in the short term, but when my child is an adult will they really have done any good? I don't want to spend all of her college money pursuing therapies that are not going to help her when she is an adult.

I also don't want therapy to cut into my child's time to just be a normal kid. I looked into other therapies, but both would require such a huge time commitment, in addition to the money, that I didn't feel it would be fair to my child or the rest of my family, especially not knowing what the outcome would be. The bottom line is that my child (and Grace) will always haveCerebral Palsy. It's not going away, and all the therapy in the world will not make her "normal" to the rest of the world.

I'm sure that I will always have some level of doubt over whether I did enough...but I think at the end of the day I know I AM doing enough. We try to incorporate therapy into our lives in an unobtrusive way, and balance it with trying to include my child in every activity that we do in the best and easiest way that we can.

Anyway, I really hope that you will not be offended or feel like I am trying to tell you in any way what YOU should be doing. But I do want you to know that you have already done SO MUCH for your children and it's okay if you take a step back and take a break from all the therapy. I have used the money that we are NOT spending on therapy to take fun family vacations, for dance class, and swimming, and saving for college and any equipment that might enhance our lives along the way. It's okay to do that. It's okay to spend your money on having fun as a family. And it might even have more of an impact on Grace's life in the long run.

The email continues with encouragement and support and ends with the following...

And it's okay if you need to take a step back and regroup. Take a break from ALL therapy if you want! It really will be OK!

As long as Grace has a loving family who treat her with kindness and respect, she will be okay. And she clearly has that:)

Thank you dear friend for taking the time to send this to me. I so value your perspective and appreciate the thoughts. It has permitted me to take the time and regroup and just enjoy my child as she is. I love you and hope I will one day get the opportunity to meet you.

The Lemonade Award

2009-10-05T15:14:00.005-05:00

I've won an award! I was given this award by one of my heros...Melanie over at B etter Than Norma l. I am truly humbled. You like my blog...you really like my blog :)

Mel is an amazing mother and blogger. She also creates awesome crowns and capes, that can be found at Etsy, to raise money for her son's therapies and treatments. I love reading Mel's blog because she so often writes about the same frustrations and anxieties that I encounter being the mother of a child with special needs...only in a much better way. She has a wonderful charming son Daniel that you will fall in love with.

The Lemonade Award is supposed to honor those people who show great attitude or gratitude, and I assume the origins of the title are from the old saying 'When life gives you lemons, make lemonade.'

So now for the rules of the award, I must follow....(and so must you if you get the award!)

- Put the Lemonade logo on your blog or within your post.
- Nominate at least 10 blogs with great attitude or gratitude.
- Link the nominees within your post.
- Let the nominees know they have received this award by commenting on their blog.
- Share the love and link to the person from whom you received this award.

So without any further ado, my nominations are:

1. Aimee at We Could Not Ask For More
2. Tara at Too Much Information

3. Stacey at Housewife in Flip-Flops
4. Angela at Busy Lizzy
5. Nelba at Chocolachilli
6. Kristina at How Life Happens
7. Patricia at My New Normal
8. Erin at Smallest Smykay
9. Cara at Adding On
10. Jocalyn at Kendall's Hope

Ok go ahead........take a few minutes and read about these incredible parents and their children!

Happiness in a Box (with a Sharpener!)

2009-10-02T18:07:00.006-05:00

Do you remember your first box of 64 crayons with the cool sharpener built right in? I remember...it seemed like forever that I was stuck with the box of 48 crayons. My mother just did not see the need for 64. She just didn't understand why I needed such beautiful colors as "cornflower", "atomic tangerine", "tickle-me pink", "salmon" and "spring green" and how they were required for me to complete my third grade education. I don't remember how huge the tantrumt I had to throw was, but I remember gazing loving across all 64 beautiful colors after my mother finally gave in...too afraid to ruin the perfect point of the silver or gold crayons, or heaven forbid, have to tear the wrapper because the crayon was worn too far down.

Today Kat Kat arrived at our home with the best surprise ever!!!! She noticed my kids were lacking in the crayon department, as their collection consists of broken pieces, miscellaneous stubs, and a few Princess head crayons. I guess I should say it consisted of these, because Kat Kat brought the ultimate Crayola collection. 150 different colors. A three-tiered holding caddy that locks in place to ensure easy access to each unique color. It is complete with a Super Sharpener- one that ingeniously collects the shavings in a built in compartment for easy disposal. This is the Red Rider BB Gun of Crayons.... on speed.

I was...I mean the girls were SO excited. I'm so happy that they appreciate the happiness that comes with "raw umber", "thistle", "mulberry", "blizzard blue" and a built-in sharpener.

MJ for Halloween

2009-09-30T19:14:00.004-05:00

We have been trying to decide what to dress as for Halloween. Grace has the perfect idea. She already knows 3 of his songs.

Our First Soccer Game

2009-09-27T19:20:00.005-05:00

Saturday was the first soccer game for the Little Kicks. There had only been one practice due to all the rain we'd had, so I was expecting chaos. I wasn't able to go because Grace had physical therapy at the same time, so Abe and Kat took Mack and Sophie. They looked so cute in their soccer clothes...I almost cried.

Sophie loved it but it took Mack awhile to warm up to the whole thing. He eventually wanted to play and said he have fun, so we are looking forward to next week. Yea Soccer!!! (as Sophie says)

Look What Grandpa Made!

2009-09-21T19:46:00.002-05:00

Thanks to Grandpa Lieck, Grace now has her own set of parallel bars! For about $30 of PVC pipe, this cool set of bars was made by Grace's very creative and handy grandfather. We love them and they work perfectly. She is able to practice her forward stride and cruising at home with these. Plus they are light enough for me to stand on end and put in the corner when not using. They are perfect!!

May I Have a P Please

2009-09-14T13:16:00.003-05:00

Today was Grace's first day of pre-school. She is attending with Mack and Sophie and has an aide to help her get around the classroom. I got there early to make sure everyone (kids, teacher, aide) were comfortable with the set-up, and I had a few minutes to talk with the teacher about Mack and Sophie and how their first week (last week) went.

Teacher: "We have been working on writing our names and Sophie does well, however I have a funny story...I hope you're not offended."

Oh no, I'm thinking, what has my daughter done?!

Teacher: "I was watching Sophie write her name and there was an S and an O and then an H. So, I asked her...Sophie, that is really good, but where is the P?"

Sophie: "Right there!" As she points down to her bottom.

Oh Sophie, you are such a logical, deep-thinking child. I love you!

Brainteaser

2009-09-11T18:32:00.003-05:00

Question: What is missing in this photo?

Answer: A hat, a visor, or any type of head covering. After 5 months, Mack no longer insists/demands to wear an animal themed hat. It really didn't bother me but his dad was really getting tired of the whole thing.

Zoo Outing

2009-09-09T09:00:00.002-05:00

Last week we spent a morning at the zoo with Marcy and Matthew. Grace was at physical therapy so it was just me, Mack and Sophie. I always feel guilty about these outings without Grace but we had a great time. I keep reminding myself that Grace gets to do plenty of stuff and she needs to be in pt right now. It also help that my friends keep reminding me of this also.

Mack and Soph looking at the "mingos" (flamingos)

Cool parrot and cool kids.

Love the penguins!

Girls' Night - Manis, Pedis and The Sound of Music

2009-09-08T10:00:00.000-05:00

Saturday night the Horns were playing so Abe and Mack went to a friend's house to watch football. Kathryn, Grace, Sophie and I has a girls' night. While we watched The Sound of Music (and of course, sang along...and sounded dang good), Kathryn gave Grace and Sopie manicures and pedicures. At their request, request four different nail polish colors were used. Each hand and foot and a different color...brown, blue, red and pink.

Grace and Sophie then wanted to give Kat a pedicure. God bless her...she let them. One foot was almost entirely blue when they were finished and she left it that way...well, at least until today because she didn't want to hurt their feelings. Kat, you are one in a million!!

Intensive Physical Therapy

2009-09-07T18:34:00.006-05:00

Tomorrow begins our last week of Grace's first session of Intensive/Therasuit Therapy. This session lasts for three weeks, three hours a day. There is a long waiting list for this physical therapy in Dallas at Beginning Steps and we were so fortunate that some cancellations occurred and we were able to slip into a slot. We were previously looking at next October for our first session. You can read more about Therasuit Therapy here.

Grace has been great...for the most part. She has been doing better than I would probably do if I had to "work out" for three hours straight every day. There have been a few tears but not because of the work. She is still fearful...fearful of falling. She doesn't have enough confidence in her abilities. We are slowing working through this.

Grace is using weights to strengthen her muscles. The weights or repetitions are increased everyday. She is becoming so strong!
Here Grace is wearing the Therasuit and being held my 4 bungees. This helps teach her to stand "properly".
In this photo only 2 bungees are being used. Yipee!! She is getting so much better at standing. She is not wearing the Therasuit here. I like that her time in it is being limited.
Look at her standing with very little assistance!!

Trying Out A Wheelchair

2009-08-25T18:51:00.003-05:00

We have been putting off purchasing a wheelchair currently for a few different reasons. Our PT and Conductors think we should wait because we don't want Grace to get too used to getting around in a wheelchair. They/we want her to continue to work towards walking. In addition, wheelchairs are very expensive and insurance and Medicaid will only cover one type of chair over a several year period (I believe in excess of 5 years) so we really must know what kind we want when we get it, unless we want to pay for it out-of-pocket.

For now we have acquired a loaner. We don't use it a whole lot, but Mack and Sophie like to push Grace and she is really starting to figure out how to get around in it by herself. I know that it is likely we will have one of our own one day but for now we are thankful to have this one to try out. Thank you so much Julie for thinking of us!

Are You Okay Mommy?

2009-08-20T19:38:00.004-05:00

I've spent much of this week on the phone with our insurance providers and other agencies looking for a way to get some of Grace's therapies paid for. Can you believe that our insurance does NOT cover out-of-network physical therapy, even when the type she will be doing is not offered within a 200 miles radius!!!!!?? I'm pretty stressed about the whole situation. We have spent thousands and exhausted our savings to get Grace the help she needs to be the best she can be. I have felt at peace that we will go without vacations, and Mack and Sophie aren't able to do outside activities but where will the hemorrhaging of monies end. How much more can we take? I know that we are not destitute and for that I am so thankful but what happens if/when there is no money left. Will Grace have to go without certain therapies? That is NOT AN OPTION. Will I fail her?

Today as I was going over all this on the phone, etc, Sophie came up to me and said "Mommy, are you okay?" I was taken aback. Was she watching...listening...or did she just sense that I was not at my best. I was at the point that I honestly though I might vomit.

"I'm just a little tired today Soph. Everything's okay." I replied.

As she began to rub my arm, she leaned in and whispered "I love you mommy." That's when the tears began.

My Babies Are Growing Up!!

2009-08-18T20:14:00.003-05:00

On August 9, my 28 week premature babies turned 4 years old. I can't believe that my 2 lb 11 oz boy and each 1 lb 13 oz girl are almost too big for me to carry...are counting and picking out letters...are choosing their own clothes. How can it be that we are so blessed?

Here they are three years ago in their 1st birthday hats.

PSALM 139

O LORD, you have searched me

and you know me.

You know when I sit and when I rise;

you perceive my thoughts from afar.

You discern my going out and my lying down;

you are familiar with all my ways.

Before a word is on my tongue

you know it completely, O LORD.

You hem me in—behind and before;

you have laid your hand upon me.

Such knowledge is too wonderful for me,

too lofty for me to attain.

Where can I go from your Spirit?

Where can I flee from your presence?

If I go up to the heavens, you are there;

if I make my bed in the depths, you are there.

If I rise on the wings of the dawn,

if I settle on the far side of the sea,

even there your hand will guide me,

your right hand will hold me fast.

If I say, “Surely the darkness will hide me

and the light become night around me,”

even the darkness will not be dark to you;

the night will shine like the day,

for darkness is as light to you.

For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful,

I know that full well.

My frame was not hidden from you

when I was made in the secret place.

When I was woven together in the depths of the earth,

your eyes saw my unformed body.

All the days ordained for me

were written in your book

before one of them came to be.

How precious to me are your thoughts, O God!

How vast is the sum of them!

Were I to count them,

they would outnumber the grains of sand.

When I awake,

I am still with you.

If only you would slay the wicked, O God!

Away from me, you bloodthirsty men!

They speak of you with evil intent;

your adversaries misuse your name.

Do I not hate those who hate you, O LORD,

and abhor those who rise up against you?

I have nothing but hatred for them;

I count them my enemies.

Search me, O God, and know my heart;

test me and know my anxious thoughts.

See if there is any offensive way in me,

and lead me in the way everlasting.

Another New Therapy

2009-08-18T19:59:00.003-05:00

I'm so excited!!! Grace is starting an intensive therapy with Beginning Steps Therapy on August 24. This therapy will be for three hours everyday for three weeks. There is a long waiting list to get into this therapy and because three other children were not able to attend, we worked our way up the list and got in. I feel guilty for being so happy that they could not attend but also so lucky that we don't have to wait a year (as originally planned). The physical therapist, that Grace will be working with, is wonderful and is a big fan of the PERCS procedure and familiar with the work that has to be done on those muscles that had previously not been used due to the spasticity that was released during PERCS. I'm not sure that all makes sense but work with me...I'm tired. Please pray that Grace gets all she can out this and that she eats enough to replace all the calories she will be expending. She will basically be working out three hours a day. If only I could do that :)

Awakenings

2009-07-30T17:59:00.003-05:00

Last night I had a very strange dream. Somehow...I think is was some type of medication...all the children I know with cerebral palsy stood up and started dancing, speaking, and moving around as a typical child would. Everyone was so happy and celebrating. Then one by one the symptoms of cp started coming back. Children started falling down, they began losing use of their arms and legs...many stopped signing or speaking. You could see the sadness on the faces as they started to realize that things would go back to the way they were before. It was devastating to everyone.

The dream reminded me of the movie Awakenings with Robin Williams and Robert DeNiro. In this movie patients who have been comatose for many years are suddenly "awakened" by a drug, only to fall back into a comatose state after a short period of time. They know that it is happening and that is the saddest part.

I was thinking about what this dream means. I think I have REALLY finally realized...had my own awakening...that there is no miracle cure for cerebral palsy. No matter how many therapies and procedures we do, Grace will always have cerebral palsy. I DO believe that she will continue to improve and maybe eventually walk, but she will always have special needs and will appear so to everyone. But I also REALLY know that she will always be special in many other ways...not just because of her disability.

Wordless Wednesday

2009-07-08T16:33:00.000-05:00

Yoga for Special Needs

2009-07-05T20:46:00.004-05:00

After Grace's PERCS procedure, I received an email from a mom of another child in school with Grace at ACCDAT. There was a yoga class for special needs beginning in June. It sounded great. I meet the instructor, asked a few questions and decided this was the thing for Grace. She now goes 3 days a week and Whitney is her helper (we love her and she helps make my life easier...THANK YOU Whitney!!) She loves it and can now even do some of the chanting.

The whole class...Grace, Hailey and Colin make a great group.

Grace has become so much stronger and more flexible. PERCS has much to do with her improvements but the yoga has also helped a lot. I can't remember what this pose is called but Brenda says she does it great.

This is "fierce posture". Doesn't she look fierce ;)

Grace and Hailey like to hold hands while they do breathing exercises.

I went last Friday to check it all out and took Sophie. Here she is trying to do tree pose.

I Wanna Hold Your Hand

2009-07-05T20:10:00.002-05:00

Grace is by far the most affectionate of my three. She loves hugs, kisses and cuddles. She also loves her brother Mack more than anyone else. She thinks he is the greatest thing ever!! She is always trying to rub his back or hold his hand and will have nothing to do with it (as long as we are watching). He fell asleep in the car the other day so Grace finally got a chance to hold his hand. She was so happy.

Notice the hat...the mouth has fallen off and we had to take it together today. I don't think it is going to last much longer. Luckily we have a parrot hat waiting in the wings.

Wordless Wednesday

2009-07-01T07:25:00.000-05:00

I Did It By Myself!!

2009-06-30T07:38:00.002-05:00

Sophie was so determined to do this puzzle and after a little coaching on "how to do a puzzle" from mom, she sat here and kept working until she "did it all by myself!" She was so proud and so was I. She wanted me to take a photo so here it is. Way to go Soph!! (yes, her shoes are on the wrong feet, but one thing at a time :)

Mack's New Hat

2009-06-26T14:05:00.004-05:00

The giraffe hat lasted a good 2 months. Mack never took it off except for swimming lessons...he even slept in it. Well, it finally was beyond repair and after some coxing, Mack was convinced that the monkey hat was pretty cool. He is now wearing it non-stop. Thanks Shelly, Macey and Darcey for sending the replacement hat.

He was wearing it today while Grace, Sophie and I were wearing crowns from betterthannormal.org. This was the conversation....

Me: "Hello, I'm Princess Mommy"
Sophie: "Hello, I'm Princess cess Sophie"
I was expecting Mack to say something about being a monkey, but this is what he came back with...
Mack: "Hello, I'm a trash can!"
Hmmmmm...well allrighty then?

Update on Grace

2009-06-25T20:35:00.007-05:00

I know, I know...I've been busy!! I've been meaning to update everyone on Grace since the surgery but we have been on the go. Grace is doing PT twice a week and special needs yoga 3 times a week. She has been working really hard to build up those muscles that had been covered by the spastic tone until the PERCS. I still wasn't sure the first week afterwards that we had done the right thing by going through with the procedure, but I can say now...we DID the right thing. Well, I guess we won't really know for awhile but right now she seems to be getting stronger and stronger. She sits better unassisted and cruises around so much easier because she doesn't fight the tone making her legs cross. She is so incredibly motivated to move, move, move. She is VERY close to getting into sitting position on her own and standing unassisted. We will just keep working. Check out the videos below. She gets her casts off on Tuesday.

Wordless Wednesday

2009-06-17T14:00:00.000-05:00

Galveston, Oh Galveston

2009-06-05T10:41:00.005-05:00

Well, we did it. After much prayer, much discussion and much research we took Grace to Galveston to have PERCS with Dr. Yngve. We met with the doctor and his team on Monday to discuss the procedure and Grace's situation. After several hours with his team, we decided to go forward with the surgery the next morning at 7:00. Needless to say, I didn't sleep much Monday night and was even second guessing everything as we left our hotel at 5:30 am the next morning. Is the the right thing? Is it the right time?

This is what was done...

-gastroc recession

-semitendinosus percutaneous tenotomy

-myofascial lengthening single hamstring (Timi let's discuss this)

-percutaneous adductor tenotomy

-biceps brachialis lengthening

She has cast from her toes to her knees and sleep in leg splints and arm splints.

I know it sounds like a lot but Grace was up and walking (with my help) yesterday. She is doing great but now the REAL work begins! She even rode her tricycle this morning. She is, obviously, pretty weak but I am so excited about her recovery and the possibilities. A PT is coming to the house tomorrow morning to help me develop a home program. She will also be doing yoga on MWF and then back to CE in July. We will be very busy!!!

Wordless Wednesday

2009-06-03T20:27:00.003-05:00

Mack and the Mohawk

2009-05-28T14:07:00.002-05:00

I took Mack to get his haircut Saturday. Abe usually takes him because I just don't have the energy. Mack was great and we decided to change it up a bit. What do you think?

Wordless Wednesday

2009-05-27T18:17:00.001-05:00

A Pretty Big Deal

2009-05-26T16:53:00.006-05:00

For most of you these photos may not look like much, but they look AWESOME to me!!! Grace is kneeling by herself!!! She can now play with Mack and Sophie at the train table and on the ottoman without me holding her. Now, I never go too far but she is loving this new part of her abilities. I'm ever so proud. Thank you God for every small step in progress...we are so blessed.

ps...yes, Mack is STILL wearing the mutilated giraffe hat.

Child With a Disability Essay

2009-05-21T13:40:00.003-05:00

I have so much to blog about but just can't get to it. Writer's block...moodiness...laziness? Hmmm, maybe. Or maybe it's all just too hard to think about sometimes. I love this essay. It speaks volumes to/for me. I'm looking for something to make a difference right now...help me find some normal.

Child With a Disability

A powerful essay about parenting a child with a disability by Judith Scott, runner-up of the Life Lessons essay-contest.

by Judith Scott

Our lives, my husband’s and mine, fill with the role of parenting a child with disabilities. We become champions of the cause, joining groups, researching new developments, taking part as vocal advocates for our daughter’s rights. Sometimes this all feels fine and we soar with competence, proud of the manner in which we are managing. Sometimes it chafes, this role for which we did not volunteer, and we are quietly resentful, then guilty. My friends say they don’t know how I do it, my family say they are so proud, and I thrive on the accolades, smile a bit brighter. But behind that smile, a ghost lingers, and the loss of the perfect life I had planned sits heavy.

Before Emily, there was a woman who was a teacher and a wife and a friend. Now there is just Emily, and the woman struggles for her bearings, tries to find her footing. I see this woman in the mirror one day and take a long moment to recognize myself. It is time to find the “new normal” that will define my life. I search for the thing that will make the difference. At first, it is running, the simple act of lacing up my Sauconys and hitting the road. Exercise helps and heals. Running segues into racing, and although not an athlete, I train and plan and accomplish modest goals. Local 10Ks and marathons expand my world, and I embrace it with unabashed selfishness.

Running makes me brave, and although life with Emily is still turbulent, I have a renewed confidence. Another daughter comes along, followed by a son, born almost exactly 10 years after Emily. We cobble together a family, now not so much defined by the disability within it but by the love despite it. Emily’s siblings speed through typical development without a hitch, gladdening my soul and adding another layer of respect for my firstborn, who struggles so. The pain diminishes, and acceptance comes in.

My husband and I always mock the fuss made over graduation celebrations. We wonder when graduating from elementary school became such an occasion. Surely no one put on the ritz for us, back in the day. But times change, as they will, and the day is upon us, as Emily nears completion offifth grade. This milestone day is marked by students all dressed up, speakers who wax nostalgic, and a video montage of the kids’ elementary-school years.

I sit in my cushioned seat, only half-cognizant of the speakers’ words. I wonder how Emily is faring backstage with her class, lined up for the processional. Her full-time aide is there to assist her, but still I am anxious, twisting the program into a wad on my lap. Finally it is her turn to cross the stage, and cross it she does, with a nudge and whispered directions. From stem to stern, it is perhaps 100 feet, but Emily’s journey is more than that. The outgoing class stands to recognize her walk; they cheer, holler her name.

Who knew that an elementary-school graduation, rife with its tired clichés and tacky streamers, would crystallize all those years of searching for peace? For now, in this moment, on this day, it is finally clear. I was mistaken. The albatross of disability in fact turns out to be a strand of uncultured pearls, each in its varied imperfection a pure and precious gift. No class I have taken, no country I have visited, no book I have read, has taught me more. This child who does not speak, who does not fit in, who is different wherever she goes, is a lesson to me.

Wordless Wednesday

2009-05-20T22:12:00.003-05:00

Grace Crawling

2009-05-07T13:52:00.003-05:00

We have been working on crawling on all fours for a long time now. Grace had the commando crawl down for awhile but this is a big deal!! It's hard work and takes her some time to get around but I'm SO proud of her.

(Oh and yes that is Sophie cleaning in the background. She thinks she is Cinderella :)

Wordless Wednesday

2009-05-06T21:32:00.003-05:00

Funky New Boots

2009-05-04T20:43:00.003-05:00

Grace has some cool new boots for conductive education. I was very excited that Timi thought it was time to put her into these type of shoes. Some of the other children at ACCDAT had worn shoes like this and we have been working up to this point. Way to go Grace!!

We have attached a thin piece of plywood to the bottom of each boot. The plywood is wider and longer than the boots and forces Grace to stay off her toes and keep her feet apart when walking. Okay, they're actually not the most fashionable but they certainly are very functional. She does great in them! I going to get some sparkly pink laces and then she'll be styling.

Sophie sees I'm taking photos and wants to make sure she is included. Look at her posing.

Minivan Yoga

2009-04-21T11:34:00.004-05:00

I love my yoga classes. I need my yoga classes. I crave my yoga classes. I can only go when the kids are in school and I have no morning meetings. So I only get to go about 3 times a week.

This morning, as I was driving to school with my right arm twisted around to the back seat behind me holding Mack's hand, straining to look over my left shoulder, I realized that I was really getting a good stretch...I am doing some sort of yoga...Minivan Yoga! There are also "poses"I must utilize to pick up dropped food, toys, etc in the back seat and there are often times when both Mack and Grace want to hold my hand at the same time. This must be done safely and effectively. It is an art form!

Hmmm...When you don't have time to go to a yoga class, just do it while you are playing taxi cab with your kids.

I am going to make millions!!! Mommies everywhere will want to do this. There will be a video, a book and I will be asked to teach classes all over the world!

I knew if I thought hard enough, I could come up with a great money making plan!!! Okay, who wants to be my first student?

I Hate It

2009-04-16T19:06:00.004-05:00

May I vent? Well, of course I can...it's my blog.

I hate cerebral palsy.

I hate not being normal.

I hate going to the playground.

I hate not being able to visit with the other mommies at the playground and play groups. I don't get to know the other mommies.

I hate it that all the mommies sit around and chat while I am being my daughter's legs.

I hate it that I don't like to go to play groups anymore.

I hate it that these same mommies will talk about cerebral palsy and "the little girl in KinderMusik who has cp and can't walk so she crawls around awkwardly", when they think I'm out of earshot.

I hate that my 3 1/2 year old daughter sits in the stroller while I help my other two kids go down the fireman pole.

I hate that when my daughter requests "I want to slide too" that I can't let her because the slide is too tall and I need someone to help me.

I hate it that I leave her in the swing too long sometimes, because it's easier.

I hate it that some mommies with 2 perfectly normal children can't find time to do anything but talk about how smart and athletic they are. (I know I'm kind of harsh on that one)

I hate it that I can't find time to do anything because I'm always taking my daughter to therapies and doctors.

I hate it that all our money goes toward therapies and procedures rather than dance lessons and soccer camp.

I hate it that I can't do more with my other two kids because I am my daughter's legs.

I hate it that I hate it.

What do you hate?

Better Than Normal

2009-04-16T09:29:00.003-05:00

Mel is giving away more crowns!!!

Check it out here and enter to win!

Wordless Wednesday

2009-04-15T19:55:00.002-05:00

Blue Sky July

2009-04-14T20:35:00.002-05:00

I just finished reading Blue Sky July by Nia Wyn. Amazing and wonderful!! This book began as Nia's diary after her son is diagnosed with severe cerebral palsy. She will stop at nothing to find a cure for her child although she has been told he will "never know her". This story is about a mother's unconditional love for her child that will never be fully accepted by others. The book is painfully beautiful and poetic. Here is an excerpt...

"As we pass the running children who hold up their heads so easily, I realize miracles are so commonplace we barely recognize them anymore, and near the mothers anxiously comparing milestones at the school gate, I see how we live in a time where normal is never enough and we are never full."

If you have a child with special needs, this book is a must read. If you don't, read it anyway...then maybe you can better understand the mother of the child in the wheelchair. You won't regret it.

More About PERCS

2009-04-14T15:59:00.001-05:00

Several people have asked me for more information about PERCS so here you go.

To PERCS or Not to PERCS

2009-04-03T07:00:00.001-06:00

So many doctors, therapists, parents...so many opinions. As a parent of a special needs child, you are never too comfortable with the decisions you have made regarding therapies, procedures and surgeries. You research it ALL, you talk to EVERYONE and you pick and chose...somtimes based soly on your gut feelings. Well, my gut is changing.

I HAD decided that they would be NO SURGERIES for at least 2 years and I HAD felt great about that decision. However, I am very close to deciding the the PERCS procedure (please read more about it below) is just what Grace needs to get her mobile. I have now seen 4 children, before and after PERCS, and am amazed by the progress. We will be going to Galveston to see Dr. Yngve very soon and we will do what he says....I think. Please pray that we will make the right decision. I'm praying like crazy!

Comment from Dr. Yngve:
I first heard about the Percs (SPML) procedure from a Physical Therapist in the fall of 2005. She had heard about great results with this procedure at a Physical Therapy meeting. I had never heard of the procedure and she urged me to look into it. I found Dr. Nuzzo’s web site (www.pediatric-orthopedics.com) and learned a lot there but still had more questions. In April 2006 I visited Dr. Nuzzo in New Jersey for 2 days started on the process of learning the procedure. I have now done over 100 cases and have been pleased with the results. This procedure does a lot more than Botox, and doesn’t have the long recovery period of surgery with full length incisions.

PERCS (SPML) F.A.Q.
What does Percs (SPML) refer to?
Percs (SPLM) refers to an outpatient surgery usually under a general anesthetic for the treatment of the spasticity and tight tendons that are found in children with cerebral palsy. The name Percs comes from the surgical term “percutaneous” which means using very small skin incisions. The Percs (SPML) method has been developed over the last 20 years by Roy Nuzzo M.D. of Summit NJ. SPML stands for Selective Percutaneous Myofascial Lengthening. I use the term SPML to refer to the specific techniques taught by Dr. Nuzzo.

What is exactly done with the Percs (SPML) procedure?
The Percs (SPML) procedure involves releasing tight bands of tendon. This is done where muscle and tendon overlap. These areas of overlap are areas where a tendon starts to blend into a muscle. The tendon spreads out and is thinner at this location and is called Myofascia. When the myofascia is cut, the muscle under it can easily stretch and lengthen.

What part of the body can be treated with Percs (SPML)?
Some children have tightness and spasticity in many locations in the legs, with the Percs (SPML) procedure, many areas can be addressed during the same procedure.
Common areas for Perc (SPML) surgery are:
n at the back of the ankle for calf / heel cord tightness and spasticity
n behind the knee for hamstring tightness and spasticity
n in the groin area for scissoring gait and groin spasticity

What age can be treated with Percs (SPML)?
Percs (SPML) works well for children of all ages and for adults. Because Percs (SPML) procedure uses micro incisions only about 2 mm long, there is very little scar that forms as a result of the procedure. This is a good feature since scar is known to be associated with recurrent contracture. This allows Percs (SPML) procedure to work well for all ages, including groups that have a reputation for recurrent contracture following conventional tendon lengthening surgery such as very young children and adolescents.

What are the long term results of the Percs (SPML) procedure?
The best data comes from Dr. Nuzzo’s web site where he reports a 5 year review of 278 cases. “Post op admissions were 0.01% (4 cases, single night). Repeat procedures at any location were 10%. Recurrence of operative site contracture occurred in 7%. There were no cases of infection, over lengthening, significant hematoma. All surgeries were performed supine. None required surgical room time in excess of 60 minutes. Parent satisfaction was positive in 100% with similar follow up survey results one year later.” My results have been similar.

Can the Percs (SPML) procedure decrease spasticity?
Yes. Walking on a contracted joint puts a strong pull on the muscle- tendon unit with each step. This stimulates spasticity. Lengthening the muscle- tendon unit decreases the spasticity in that area. The beauty of Percs (SPML) is that since it is practical with the minimal incisions to lengthen muscle- tendon units in many locations in the lower extremities, spasticity can be decreased in many locations.

What is an alcohol nerve block?
The alcohol nerve block is a common procedure that is done at the same time as Percs (SPML) in children who have overactivity of the obturator nerves, which are nerves in the groin that contribute to stiffness of the hips or scissoring gait, in which the legs cross in front of each other in walking. The alcohol nerve block takes the nerve from an overactive spasticity related state to a more normal active state. It does this by dissolving the fatty coating, called the myelin sheath which is wrapped around the nerve. The nerve itself remains intact. The myelin sheath can grow back in about 3 years. The alcohol block is often used to decrease spasticity in the legs when it is associated with groin tightness.

How is the ankle area treated after the Percs (SPLM) procedure?
There will be a cast from below the knee to the ball of the foot. Walking is encouraged. It is best to put a shoe directly over the cast. One type of shoe that may accommodate better to the width is the Vans brand, because of the construction on the tongue and laces.

How is the knee area treated after the Percs (SPML) procedure?
We will put on a knee splint made of cloth and foam with Velcro straps after the procedure. You can take this off for daytime activities. It should be worn every night for a month to prevent sleeping in a curled up position.

How is the groin area treated after the Percs procedure?
Nothing special is needed.

What exercises are recommended after the Percs (SPML) procedure?
Long sitting. This is sitting on the floor with the knees out in front as straight as possible. This helps to keep the backs of the knees stretched out.
Giant steps. Encourage the child to take as big steps as possible. Try counting the number of steps it takes to walk across the room. Then try to walk across the room using giant steps. You should count fewer steps.
Walking on uneven ground. This teaches the ability to deal with the unexpected. It also teaches fast reactions. It helps in learning new ways to use the legs.

How soon can children resume PT following Percs (SPML)?
Children who have the Percs (SPML) procedure are allowed to walk when comfortable, usually the next day. If not walking by the third day, it is time to start! It usually takes 1-2 months to regain the before surgery level of activity, then expect monthly improvement up to 4-5 months from surgery. Physical Therapy can be very beneficial and can be resumed within the week following the procedure.

My Neighbor The TV Star

2009-04-02T14:50:00.003-06:00

We have new neighbors and I love them!!! There is a mommy, a daddy, a 3-year old, and a baby and they are awesome! We have so much fun playing with them and I'm excited to have a new friend. Marnie is an wonderful host, mother, occupational therapist AND a television star!! She has developed a series of DVDs to help children with their writing and drawing skills. I'm so excited about these because, well....they really work! My kids love watching the TV Teacher, Ms. Marnie. Mack who was really struggling with drawing his shapes now can draw them while he sings the songs from the Strokes, Shapes and Scenes DVD. I'm amazed and can't wait to start watching letter series with Alphabet Beats. Mack now will ask to watch Ms. Marnie instead of always wanted to see Lighting McQueen (thank goodness).

Check out the website TVTeacher and order now. You won't be disappointed.

Now we can't move...I love our neighors!!!!

Fun at the Arboretum

2009-04-02T08:01:00.004-06:00

Sunday was beautiful!! One of those days that we will long for in July and August. We spent the day at the Dallas Arboretum with the Hodges. There is a "frontier town" in the back that the kids love to play in. There is a tepee, mud house, long cabin, covered wagon and other cool stuff. We also played by the koi pond and looked at all the beautiful flowers. I'm so glad we have this wonderful place in our city.

Wordless Wednesday

2009-04-01T14:54:00.000-06:00

Rock Star Sophie

2009-03-31T08:34:00.002-06:00

We're Just Playing

2009-03-24T18:08:00.005-06:00

It seems that everytime I ask the kids what they are doing, they say "I'm/We're just playing". Well, okay then.

Hmmm...wonder who Sophie is imitating in her pink Barbie jeep.

Obama vs. Sarah

2009-03-24T09:00:00.003-06:00

Most of you have heard about Obama's flub-up on The Tonight Show. If you haven't, you can see it here on Kat's blog. I LOVE Sarah's response!! Check it out here on her blog. Love this girl!!

Cerebral Palsy Awareness Day

2009-03-20T08:56:00.003-06:00

Today is Cerebral Palsy Awareness Day!!
WEAR GREEN to show your support!

There is also a sweepstakes going on over at "Life of Logan"
Check it out, follow the rules and enter to win!!

The average prevalence of cerebral palsy is about 1 in 278 children. This first report of the prevalence and characteristics of CP, the most common cause of motor disability in childhood, are from Georgia, Alabama and Wisconsin. Can you even begin to imagine the numbers if there was a national surveillance?

- Cerebral palsy is one of the most common developmental disabilities in the US, affecting at least 800,000 children, adolescents and adults in America. Cerebral palsy is NOT a disease nor should it be considered one. It is not even a simple or single disorder but rather a broad range of disorders that disrupt a person’s ability to move, sit, stand, walk, talk and use their hands. The severity of the movement disorder and the type of movement difficulties can vary greatly. Some patients have only mild difficulties with balance, walking and fine motor skills while patients at the other extreme are completely trapped in their own bodies, fighting rigid limbs, and unable to speak or swallow.

- There is currently no cure for cerebral palsy and in most cases, it is not preventable. In over 50 years, treatments for CP have not progressed much at all. In fact, today, there remains little consensus among medical professionals regarding what causes CP or how best to treat it. Why do 800,000 or more Americans have CP, and yet we don’t know much more about what causes it or how to prevent it than we did a half century ago?

Resources: Centers for Disease Control (CDC) and Reaching for the Stars (RFTS)

Totally Awesome 80's Party - Saturday, May 9th - Benefitting "A Child Can Do All Things"!

2009-03-19T19:24:00.006-06:00

Dear Friends and Family-

We would love for you to join us for a fun, care-free evening of flashback fashions, vintage dance moves to the Spazmatics (a rad 80’s cover band) and unlimited food and drinks – a great chance cut loose while “giving back” to ACCDAT!

I love the 80's and can't wait to break out my big hair, lace gloves and leg warmers for the party. This also may be your one chance to see Abe in a mullet and tennis shorts. Let's plan to pre-party at our house and practice our Thriller dance moves.

Most of you know how much ACCDAT means to Grace and our family. For those of you that see her, you know the improvements that have been made. She is blossoming in a confident little girl. Please help us support ACCDAT!

Click here to view the invitation and here to register to attend.

Warmly-
Jacolyn and Abe
214-824-6014

Better Than Normal

2009-03-19T17:10:00.005-06:00

Therapies are expensive. Equipment is expensive. Money is limited.

Children with special needs require special therapies and special equipment. Parents of these children want to give their child every chance in life and don't want money to be a hinderance. We look for anything that gives us hope. Sometimes mothers return to the workforce. This is difficult because of all the time required to attend to your child. Some parents try to grow money trees...mine is not producing. Others of us look for other opportunities working at home to raise the money required. I, for one, am selling Enlyten (ask me if you want to know more about because this post is not really about me). The creative mothers (not me) come up with some really good ideas.

My friend Mel, the mother of Daniel, is making the cutest crowns. They are adorable and if you have a birthday or any other holiday coming up, these are a must have. Check out betterthannormal.org to see her stuff. You will love it and all proceeds go to a very worthy cause...Amazing Daniel.

Mel and I have never met in person, but we are kindred spirits and I hope someday we will.

Wordless Wednesday

2009-03-18T12:57:00.003-06:00

Going to Oklahoma...on our trikes

2009-03-10T14:08:00.004-06:00

Today we took trips on our tricycles in the house. It was a bit rainy and muggy outside. I love doing this because it is one thing Grace can do with her siblings. After talking with their NiNi today on the phone, they wanted to take a trip to Oklahoma...so we did.

Wordless Wednesday

2009-03-04T20:57:00.001-06:00

Making Some Music

2009-02-28T08:53:00.004-06:00

I love music, so I'm thrilled that my kids do too...especially Grace. She has really good rhythm and great taste in music. (We like much of the same stuff) So, I love this photo of her pounding the ivory. Most of all I love this photo because 6 months ago she would not have been able to sit up like this unassisted. She is getting stronger every day. I'm thinking of possibly having her start piano lessons. I'm not sure how well she will be able to do because of the spasticity in her arms. She will probably never be a concert pianist but I know she will make beautiful music.

Make a joyful noise unto the Lord, all ye lands.

Serve the Lord with gladness;

come before his presence with singing.

Know ye that the Lord he is God;

it is he that hath made us, and not we ourselves;

we are his people, and the sheep of his pasture.

Enter into his gates with thanksgiving,

and into his courts with praise;

be thankful unto him, and bless his name.

For the Lord is good; his mercy is everlasting;

and his truth endureth to all generations.

psalm 100

ACCDAT on the news again!

2009-02-27T10:26:00.001-06:00

Grace was on the news again!! Well, really A Child Can Do All Things (Conductive Education of Dallas) was on the news, but Grace got some coverage (she's in pink). Watch it here.

Wordless Wednesday

2009-02-25T16:37:00.005-06:00

Wordy Wednesday

2009-02-18T12:09:00.007-06:00

I know, I KNOW!!! I have been very slack lately on photos and what not. It just seem like they are extra busy right now...taxes, my other business thing, school, trying to put a house on the market and my Thursday GNOs :) are keeping us moving. I'm also trying to arrange therapies and child care for the six weeks Grace will not be in camp.

Last week we had 3 Valentine parties. Two for Mack and Sophie and 1 for Grace at ACCDAT. I chose to help with the Friday party at preschool with Mack and Sophie and in typical "Jacolyn fashion" I stressed about food, games, crafts extra. For goodness sakes, they are 3! Give them a sucker and they are good to go. Below are photos at the party. In the first one, Sophie is playing "Pin the Lips on the Teacher". It was really fun!

I also was conflicted about Grace on Friday. Should I take her out of ACCDAT for a few hours so she could attend the preschool party or leave her at ACCDAT and let her party with her friends there...I wouldn't be there. I hate making these kinds of decisions....I shouldn't have to. I know many of you have more than 1 child and deal with these decisions all the time...where to be...who to be with. But they are triplets, they are the same age! Why do I have to choose?! Why can Grace not walk? Why is she not able to be with her sibling every day?! Why God, oh why! It's just not fair.