Elsie's story- part 4

If you have missed them, here is part 1, part 2, and part 3.
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So next in line on our Cerebral Palsy journey was to get Elsie's MRI.

I was a good blogger at this point so here is what I posted that day:

Repost- March 17, 2008

Today we had Elsie's MRI. She is one tough cookie...poor thing had no idea what was going to hit her! The nurses were so nice, and of course Elsie was all smiles...UNTIL they put the IV in...she was MAD...being held down by Mom, Dad and a nurse, with another nurse sticking the IV in...HORRIBLE!!! But then it was in, she calmed down, I rocked her for a little while until they took us to the MRI room. They told me to be aware that when they sedate her, her body will go limp, and could stop breathing, but not to worry, they have people there just in case, as if that makes me feel better! Anyway, they start to give it to her, she cries cause they said it burns as it goes in, and then all of the sudden her head falls back and her legs seize up...then they say "Go ahead and lay her on the table now." I was so worried, but they said she is okay she is just going asleep, so I laid her down. That is when I broke down...my baby laying there with her arms all floppy, still a little conscious, but her body completely lifeless...oh man...so hard. Then they took us to a room to wait. We were supposed to be there when she woke up...but when the nurse came in she said "Well, she is awake and laughing at us" So we went in there and sure enough...our little Elsie was as high as a kite! So funny! Anyway...she is a trooper! We love that girl! We should get results in the next couple days.

Before the IV...she has no idea what is coming!!!

Daddy loves this girl!!!
Very mad about the IV in her foot!!!

Getting calmed down after the Iv stick
Here is Elsie VERY loopy!!!
Still a little loopy!
On the way home with her new friend from the hospital, Buttons... (very cute it is hand-made and donated to the hospital)

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We didn't have anything solved by doing the MRI.
Which was kinda frustrating.....but what can ya do.
The next big stride that Elsie made was when she started being able to hug us.
She was so week in the arms that to put her arms up and around our necks was just so hard.
Here is my post about that.
She melted my heart that day.
I remember it like it was yesterday.

Repost- April 4 2008

We have never gotten real hugs from Elsie.

The lack of strength in her arms has made it hard for her to stretch her arms to go around something...when you asked for 'loves' she would be very sweet and lay her head on your shoulder, but you never got a wrap around squeeze from her...

So in the last few days she has grabbed us around our necks and she won't let go...my heart is so happy to see her able to express her love the way she wanted to.

Nothing makes me happier than to get one of these squeezes from little Elsie...and she is more than happy to hand them out!!!

Anyway, just thought you would all enjoy some pictures of Elsie's newest milestone!

Then at the end of April 2008, Elsie started to cruise at 33 months of age.

We were so excited....

Again, thanks to blogging here ya go.

Repost- April 23, 2008

  

So Elsie has been making great progress.

In the last few weeks she has learned to do a lot of fun stuff and I wanted to document it.

Last week she started to pull herself up standing. She does it all the time and she is perfecting it now. She also will cruise a little bit along the couch, and she laughs the whole time, both the excited and scared laugh all mixed into one.

She still can't stand alone without support, but that is what we are working on now.

She has also managed to learn to climb a few steps...perfect timing now that our stairs are hardwood!!!

And she has finally learned to use a straw. This has been very hard for her to figure out. The muscles in her mouth are so weak, and her tongue tends to push everything forward, and it still does, she just learns to cope with it and get it to work for her anyway.

It started with Capri Suns..the straws are thinner, so takes less suction to get the drink up...after a little bit she caught onto that, and then we tried the big straws. She gets very excited when she gets a drink up the straw, and chokes up a little bit some of the time. But she loves it.

I love that with every little thing Elsie learns she is SO excited! She makes me appreciate all the little things we can do ourselves with no problem!

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Next up was Elsie's new ride!!!!!

We knew she needed some kind of aid when walking.

She just did not have the balance, but she wanted to do it so bad!
We started with a loaner from Katie, her P.T.
But then she got her very own shiny GOLD one!

Repost- May 5, 2008 

Elsie's Physical Therapist brought this to us today to try out. Elsie knows what she needs to do to walk. She just has trouble with her balance and her legs tend to buckle under her. So we have been thinking about getting a pediatric walker for her, but we weren't sure if doing that would hinder her from walking on her own some day. We didn't want her to become dependant on it. But we decided to give it a try. She loves it. This one is an old model, and we are going to go next week to a open house thing where there will be many vendors and we can figure out what would work best for Elsie and her needs, but for now this is our loner, and you can already see how much she is loving it.
Madi had to help her out on the grass, it was a little harder to push around there.

Repost- May 16, 2008

Elsie got her new ride today!!! She is loving it. This one works MUCH better for her...first of all..it's GOLD...how could that not be better, right??? NO, but really, it stops when it starts to roll backwards...which is a good feature. The front wheels swivel, which makes it much easier for her to maneuver where she wants to go. She loves it and has worn herself out today walking with it. Her little legs get tired pretty fast, but she loves it, so she keeps going! She will sleep good tonight, that is for sure. Sorry about all the pictures, but she just looks so cute...I can't help it! I should post a video, I will do that another time.

Loves and kisses for her daddy! That girl has him wrapped around her finger!!!


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Okay, that might be enough to post for now.
Again, the girl amazes me.
She is such an angel to us all.
I am so Thankful to her.
I plan to continue to post these until I am up to date.
I had been totally fine with the diagnosis up until she turned 3.
That is when I had a hard time.
I will get to that.
Thanks for reading.
It really is so important to have other aware out there of not only Cerebral Palsy, but all other disabilities out there.
They have a heart and soul too.....I think sometimes people forget that.
I also wanted to out out there, don't be afraid to ask questions.
We would much rather you come and talk to us instead of staring.
Elsie is perfect for this....she doesn't wait for someone to come up to us....she is always there with a big smile on her face saying "HI" to all who will look at her.
More to come.

Elsie's story- part 3

So we finally got an appointment with a neurologist.

We went when Elsie was 14 months old.

Here is a small blurb that I wrote on myfamily (website for my family side):

So we went to the neurologist today...things went well, he did   a good job, he spent a lot of time with us, and he said he doesn't think she has increased tone, or anything to be concerned about.   He does think she is behind in her milestones, but he said in 6 months, when our next appt. is, he thinks she will be all caught up.  

I don't know what is wrong with me.  

I should be happy nothing is wrong, but deep down I think there has to be something more than just her being behind.   I figure we are doing everything we can for her right now, and she is making progress, so I guess we will see where she is in 6 months from now.

I just left the appointment mad.

I just didn't feel like he listened to me.

And of course, I didn't want anything to be 'wrong' with my child....

But I just knew, in my gut, she was more than just behind.

I think Dr. Allie was a little frustrated too.

We decided not to go back to him.

In March 2008, when Elsie was 20 months old, we took her to a Developmental Pediatrician.

Here is what I wrote about that visit (I am glad I wrote all this on myfamily, or I wouldn't have it at all!):

So we took Elsie to the developmental pediatric today...he is a strange duck, but he worked with Elsie, and spent a lot of time with us.  

He said Elsie is "just a little puzzle".  

He said there are things that makes him think maybe it is genetic, the crease across her hand, her high arch inside her mouth, her small head.  

 But he hadn't gotten the results from our other Dr and the blood tests. 

He wants to know what the chromosomes said.

Brent and I both remember Dr. Allie saying they came back normal...but he said she might not have even gotten them back yet.

Anyway, so he will get those. 

If all is good with that we will order some different tests, and most likely do an MRI.

He says it will probably come down to her being diagnosed with mild CP.

 The Dr said he would want to do an MRI just to make sure there isn't anything inside we are missing.   Cerebral palsy, loosely termed is brain damage. 

And for there not to be any reasons for for Elsie to have brain damage...usually it comes from a traumatic delivery, deprived of oxygen,and other stuff that hasn't happened to Elsie... my pregnancy was no problem, birth was no problem, and so they just want to check to see if they are missing some other kind of cause.   Does that make sense? 

Anyway, but he did say for now we are doing what needs to be done to help her get the furthest along.

He did say he was amazed with how a baby could be so happy for so long and smile the whole time. 

A few things he said that kinda sums up her "puzzle" of a body.

  Her body is both high tone and low tone.

Her hips, ankles, elbows, and knees are all high tone, and hard for her to bend, and the rest is low tone, so when they try to work together one muscle is pulling harder than the other can so they just can't do the function it is trying to do.

She is at between a 9-10 month age in her speech and about a 12-14 month age in her motor skills....but he said cognitively she is ahead, he was amazed with how many body parts she could point to.

That she understood things you said to her...I told him it is like her mind knows what to do, but she just can't get her body to do it.

Man I think I would be so frustrated if I were her, but she is not.

She is such a blessing in our lives.

You can't look at her and not smile.

She is definitely our little angel.

Anyway...just thought I would slip in there...mothers intuition is always right...how long ago did I say that CP was what she had???

Anyway, we love our little angel!

I remember the fear I had of the Cerebral Palsy word.

Worried if she would be able to have a good life.

It wasn't a shock when she was diagnosed....because I had done research, and already knew in my heart that was what it was.

I knew we were giving her all the things we could.

She was happy.

Of course she would have a good life.

And she would make others lives better all along the way.

There is definitely more to the story.

So part 4 is on it's way.

Re-post videos of Elsie Rose.

I really want to get to part 3 of Elsie's story....but I, again, don't have time and need to go to bed.
But I did want to re post these videos of Elsie.
This is her around 14 months old.
We had been doing P.T. for a few months by now, and she was making some great progress.
Enjoy.
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Sept. 14, 2007
Elsie has been working real hard and we wanted to share with our friends and families her latest accomplishments.

Elsie has just started to hold her bottle for herself, she won't do it if she is really hungry, and she is kinda just playing in this video, but at least it shows she can do it. She still can't really bring her arms up to tip the bottle up, but we are working on that.

This is the biggest thing she has been working on. I know that for most 14 month old babies, an army crawl isn't that big of a deal, but for Elsie this has been a huge milestone for her to reach. We are very proud of her. She is a determined little cookie!

Sept. 28 2007

Last night while playing patty cake with Elsie she started to clap, just a little...then today during physical therapy she went crazy clapping, well, as crazy as Elsie gets...so tonight- by the way, we finally rented 'barbie-Island Princess' and Cassi started to clap and Elsie saw her and followed suite...so we got the camera out.
We got a couple claps, but I think she was wondering why we were all hovering over her acting like nuts! Anyway, just sharing the good news!

Elsie's Story- part 2

Like I said before...she became a dream baby.

I had noticed a few delays...like not rolling over....but I also knew you can't expect every kid to be the same.

I actually thought it was cause she was spoiled....she was sure held a lot!

I do remember when holding her, you couldn't sit her on your hip...you know the position mom's do most.

Elsie actually couldn't open her legs very far to go around your waist.

So I got used to holding her with her legs out front.

No big deal.

She did always feel tight, but also strangely like a rag doll at times.

It was very puzzling.

At 6 months she wasn't sitting.

That had always been the benchmark milestone, I thought.

But again, I didn't want to compare her to other kids her age.

She could be propped up pretty nicely, so no big deal.

I would bring things up to the Dr. at appointments.

And I was always told that she was just a little delayed, and she would get caught up soon.

I think Elsie was about 7 months when we decided to find a new pediatrician.

I think that was the best thing we ever did for Elsie!

That is when we found Dr. Allie.

Dr. Allie agreed with us.

She agreed that there was something up.

Elsie was way too tight.

Her feet wouldn't sit flat, eating was hard for her, and she had missed so many other early milestones.

For the first few months we just watched her.

Around 9 months or so...(I sure wish I kept better record back then)...Dr. Allie decided she would send Elsie to have some Physical Therapy done.
This is something I wrote on our myfamily website:

"Well, I took Elsie in for her 9 month appt. She weighs in at a wopping 16 pounds, about 10%...so she went down a little in that, at 6 months she was at 15%. She is in the 50% for her height, and 8% for her head...

I talked to the docter about her upper body, and how she seems to not be developing as she should at this age, in her fine motor skills. Well, the doctor took a look at her, she noticed that Elsie is very stiff, in her joints, her legs and arms, so she wants me to take Elsie to a physical Therapist, to see what we can do to help her, and also see if there is anything else wrong happeneing, but she said Elsie is developing great in her launguage and the way she responds, it is just her fine motor skills she was concerned about. The doctor did say that stiff joints like this is a sign of ceberal palsy, but with the way Elsie responds and acts, she doesn't think that is something we need to worry about."

We went to the hospital for our first P.T. session, and Elsie was having none of it.

Like I said, she was spoiled.

I also think that Mom and Dad were the only ones who learned how to 'hold' her the special way to help her feel safe.

That might only make sense to me.

But to hold Elsie was quite the feet.

Like I said, she couldn't open her legs very much.

Her back was pretty stiff, so she kinda stuck out away from you.

There was no leaning in a cuddling...she simply couldn't do that.

Anyway, she knew she was safe when we held her, but when others tried to, she felt unsafe.

That is the best way I can describe it.

The lady at Physical Therapy suggested we look into the Infant/Toddler program.

If qualified, you would receive services in your home for your child.

Of course, we qualified....and that is when Katie, Joanne, and Jessica entered our lives.

I think she was about 11 months when we started in home therapy.

Once a week, Katie would come over and do P.T. with Elsie.

Katie has always been so great with her!

I can't believe she has been with us for so long!

Joanne is Elsie's Speech Therapist, and she came about once a week also, or sometimes 3 times in a month.

Now Elsie wasn't 'talking' much at that point...but Joanne did some awesome mouth exercises and massages to help her poor little tight mouth loosen up.

She was and still is amazing with working with Elsie.

I also credit her with Porter's recent obsession with the 'Ck' sound....hilarious!

And Jessica was Elsie's Occupational Therapist.

She worked on Elsie's fine motor skills a lot.

We sure miss Jessica.

She lasted until Elsie was too old for the Infant/Toddler program at 3.

But she is still around, and she was the one who suggested I get the electric blanket for little Elsie.

Thanks Jessica for being in our life!

We never had any kind of diagnosis...and the therapist didn't really have any suggestions either.

I am not sure if they just didn't want to make any, for fear of worrying me, or if they really just didn't know.

Then we hit One Year Old.

Of course no walking....or standing.

She could sit, kinda, but sitting on her own was a challenge.

She didn't have the core strength to hold her up for very long.
And she would slowly tip to the side.
And she did not have strength in her arms if they weren't right in front of her...so she never caught herself.
But she smiled...oh, she smiled!

What I have failed to mention through all of this....

Elsie was always such a trooper.

No complaining....

She was and still is the hardest worker I know!!!!

She tries her hardest, and gives her all.

She could not do the things that the little babies around us could do so easily.

But she was always so determined.

And she always had that smile.

That smile that just melts your heart.
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This only covers up to the first year of her life.

So come back to hear more.

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Only cause I can't skip a day blogging...he he he...

I will write a little about today.

I am so exhausted cause Elsie Rose had a rough night last night.

But she said she would sleep good tonight...we will see.

Elsie got to go to the birthday party of her best little friend Alex.

Alex got a bird for her birthday, and Elsie thinks it is pretty cool.

As long as Alex holds him.

**

Somehow the day got away really fast, and I have a really messy house.

So I am gonna load the dishes and go to bed.

Elsie's story-part 1

When I read other stories of families who have children with Cerebral Palsy, their story usually begins with a baby born premature.

Or major complications.

That is not our story.

My pregnancy with Elsie was great.

No major issues.

I went into labor with Elsie at about 3:00 a.m.

We went to the hospital because I started bleeding.

When we got there, they stuck us in a room, and we didn't see anyone for a long time.

At least it seems liked that.

I was in pain, and worried sick about my bleeding.

Finally they came in to check me and I was a 7.

At that point they got serious...and rolled me into the delivery room...and got me in a gown.

I was checked again and I was almost to a 10.

But we had no doctor.

I was given an intrathecal, a fast acting epidural that also goes away fast.

Great for fast deliveries.

Then I had to HOLD ELSIE IN until the doctor showed up.

Finally, I was able to push, and out she came.

She was born at 5:39 a.m.....so it was all pretty quick.

I was shocked to see a blond little girl!

There were no big problems.

We took her home a couple days later.

Things started out rough because eating was pretty hard for her.

She would only eat for 5 min. at a time.

And she cried ALL THE TIME!!!!!

And that is not an exaggeration.

She cried all.the.time.

Poor girl.

Of course everything makes sense now.

But at the time, I had no idea what do do for this baby.

We would swaddle her....VERY tightly.

Then Brent and I would take turns holding her close and tight to our body and bounce our bums on my exercise ball.

If she was held tight, and majorly bounced...she seemed to be fine.

I can't even tell you how exhausting this was.

It finally got to the point that I stopped trying to nurse her.

She just wasn't gaining weight.

So we went to the bottle, and she would still only eat for maybe 5 min.

I know now that her poor mouth muscles were too tired to suck.

But back then, I didn't know what to do.

I started making the hole in the nipple bigger so more milk would come out in the short amount of time.

And since she had trouble with sucking....it would just poor down her throat.

Finally at about 4 months....we saw a beautiful SUNSHINE through the storm.

Elsie became the happiest baby on earth, with the absolute BEST smile!

Oh man...and those eyes.

She was a dream baby.
And she always had that little tounge hanging out....she still does that.

Everyone loved her, she would catch peoples eyes everywhere we went.

I could not believe this was the same baby!

I finally fell in love with her.

Not that I didn't love her, but I felt like I never had that bond with her, cause all she did was cry.

And I just couldn't fix it.

It was such a hard time.

I don't know what changed....except that maybe she was finally getting enough food.

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...to be continued

Smiley face reward!

We have been trying all we can to get Elsie to do better in school.

She does great, but she has been a little bit rotten lately.

It is all absolutely developmentally normal!

But still, we want her to be good and obedient.

So we got her some fun new foam soap to use in school.

Washing her hands was the biggest issue, she doesn't like to be told what to do.

So that has been working GREAT!!!!

She comes home every day with a book, letting me know how the day went, what her snack was and what she did.

That way, when I talk to her about it, I can kind of get an idea of what she is saying, by reading what they wrote in her book.

Anyway, she also gets a smiley face rating.

Up until a few weeks ago, she rarely got anything but the super happy face.

But then she started to say 'no', and throw some pretty crazy tantrums.

Well, we told her that when she comes home with a smiley face, she gets a reward.

She gets ice cream, and unlimited horsey back rides from Daddy!

I know, not great to bribe your kids, right?

But in this case, what's the harm????

And it has been working great.

This girl loves her ice cream and unlimited Horsey back rides from daddy!

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Also.

I have just recently found out that March is Cerebral Palsy Awareness month.

I am excited about that.

I love to hear the stories of others.

I have been finding info, and blogs about families who have someone with CP.

One thing I have found, there needs to be more support groups.

I would love to have some kind of buddy walk or walk-a-thon, or even some kind of get together to meet these amazing people.

If anyone knows of any such thing, let me know!

So in honor of the month, I thought I would tell Elsie's story.

I am gonna take the next few days and write all I can remember.

I sure wish I was a blogger back when she was born.

I would have loved to know what I would have written.

We had some pretty ROUGH times for the first four months of her life.

And it took over 18 months to get her diagnosed....

So check back for Elsie's story.