~Poem~

My sister in law, Crystal, recently sent me this poem.  It's words speak volumes.....

A meeting was held quite far from earth.

It’s time again for another birth,

Said the angels to the Lord above,

This special child will need much love.

Her progress may seem very slow.

Accomplishments she may not show.

And she’ll require extra care,

From the folks she meets way down there.

She may not run or laugh or play,

Her thoughts may seem quite far away.

In many ways she won’t adapt

and she’ll be known as handicapped.

So let’s be careful where she’s sent.

We want her life to be content.

Please Lord, find me parents who

will do a special job for you.

They will not realize right away

The leading role they’re asked to play.

But with this child sent from above

Come stronger faith and richer love.

And soon they’ll know the privilege given,

In caring for this gift from Heaven.

Their precious charge, so meek and mild,

Is Heaven’s Very

Special Child.

Top 20 Reasons Moms of Kids with Special Needs ROCK!!!!

Borrowed from www.lovethatmax.com and another blog I follow.


Top 20 Reasons Moms of Kids With Special Needs ROCK

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.
2. Because we’ve discovered patience we never knew we had.
3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully. 
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good. 
8. Because we are strong. Man, are we strong. Who knew we could be this strong?
9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.
10. Because we work overtime every single day.
11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.
12. Because we are more selfless than other moms. Our kids need us more.
13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.
14. Because we inspire one another in this crazy blogosphere every single day.
15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.
16. Because we never stop pushing for our kids.
17. Because we never stop hoping for them, either. 
18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.
19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."
20. Because, well, you tell me.

4 months old!

Yesterday Madison was 4 months old!!  She is getting sooo big!  We took her to her checkup......12 lbs 11 oz and 24 1/4 in. long.  She is in the 85% for weight and 90% for height on the Down syndrome charts.  I am not sure where she is at on the typical charts.  I think probably around 25% or something.

I am so proud of my little baby girl!!!  She is getting so much stronger every day!  And much more social!! Her smiles literally light up the room!  They have just a little bit something extra......I guess it's that extra chromosome that makes her smiles so wonderful.  :)

Having a "conversation" with Mr. Giraffe

Easter weekend

I am finally getting around to putting the pictures on the computer and writing a post about our wonderful Easter weekend!!!

It was an absolutely GREAT weekend!!!  I love Easter!  Okay......what holiday don't I love!  :)  I have so many great memories of holidays from growing up.  Sometimes I think I am reliving my childhood through my kids......I get just as giddy and excited as they do!

We started the weekend by dying Easter eggs.  This year went a little more smoother than last.  Last year, Taylor just couldn't get the concept of not taking the Easter eggs out with her hands.  Her fingers were stained for several days from the dye!

Taylor decided to give me sticker "tattoos"!

On Saturday, Taylor went to her first BIG Easter egg hunt.  I don't think we went to these when we were kids but I sure wish we would have.  It was awesome!

There were hundreds and hundreds of eggs.......

And then they were gone.  Seriously, I think they whole thing took maybe 1 1/2 minutes.  They were just gone!

Taylor was funny.......she got so excited to run out there.......she just kind of ran around in circles at first. I kept telling her to pick up the eggs but she just giggled and ran.  Then she took a face plant into the ground, lost her boot, and finally settled down enough to start picking up the eggs.  It was funny!

I am definitely looking forward to next year's egg hunt!  I can't wait until both girls are able to do it!  It will be so exciting to see Madi out there running around......because I will know how hard she has had to work to get to the point of doing that.

On Saturday night, we HAD to lay out something for the Easter bunny to eat..........

And the Easter bunny left us a pile of poop (dried raisins) leading the way to the baskets ......

Taylor woke up in the morning so excited to see what the Easter bunny brought her!

She got princess outfits and matching shoes to dress up in!

Her own camera so she will stop using ours (and dropping it)

The rest of the day was very relaxing!  Church followed by lots and lots of eating and lounging around.

Gigi and Madi

I have to admit, though, I am really glad that all the holidays that involve candy are over.  It starts out with Halloween, Thanksgiving, Christmas, Valentine's Day and then Easter.  I had an excuse this last fall for being a few extra pounds......I was pregnant!  But, now, Madi is 4 months old and it is time to start losing that baby weight.

I hope everyone had as wonderful Easter weekend as I did!!!

First ST session

So, this week with Madi's PT session, we had a speech therapist come and do a consultation.  This lady was extremely knowledgable!!  I learned so much with her visit!

First of all.....when I think about the fact that Madi has "low tone", I always think about her large muscles and that the low tone will slow down her sitting, crawling, walking, etc.  But, I never have really thought too much about the fact that the whole mouth is a bunch of muscles.  So, the low tone in the mouth will affect her eating, talking, holding in her tongue, the way she holds her mouth, etc.

So, she showed me how to do facial massage.  It's designed to increase her awareness with her face and to "wake" up and tone her muscles in her face.

Next......one of the main reasons why people with Ds tongues stick out.  Well, the palate on the top of the mouth is two separate bones that are not fused together until the baby is about 1 year old.  (It's very similar to the way the skull bones are not fused at the top of the head and you have the soft spot.)  During that 1st year until the bones are fused together, it is really important to have the tongue in the mouth.  It makes it form a nice arch in the shape of the tongue.  If the tongue isn't in, the bones fuse and make a very shallow arch, which the tongue really doesn't fit into resulting in it sticking out.

So, she has shown us how to do Palatal massage.  We are kind of guiding the bones to form a nice arch for her tongue to fit into.

Next thing I learned.....a lot of times when you see people with Ds, it looks like they are sticking out their jaw and you don't really see their upper lip.  This is because the upper lip muscles never develop the tone that is needed and the lip just kind of disappears in the bottom lip and jaw.  To help with that, we are using Toothettes (it kind of looks like a small sponge on a popsicle stick).  We place it in between her upper lip and gums and roll it to stimulate the upper lip muscles.

We are supposed to do all these new exercises with her 4-5 times a day.  It sounds like a lot of new stuff and time consuming.  But, really it is not.  The whole sequence of exercises takes just a couple of minutes and we are to do it right before feeding.

I am really excited about this speech therapist.  She was extremely nice, explained everything and was so happy to see me starting these type of exercises for her mouth at an early age.  A lot of kids don't see a speech therapist until they are 1-2 years old but she's already starting at 3 1/2 months!!

She's going to come out again once we have started solids with Madi and have been doing it for a couple of weeks.  She will kind of tweak the way we are feeding her and also give us some more exercises to do for her mouth.

This last week has been a GREAT week!!  Madi is just doing sooo well with everything!  It's kind of like something has clicked in her.

She is officially holding her head......without it bobbing all around!

She is doing tummy time for a long period of time without getting fussy!  And when she finally gets bored, she just flips over!

We are working on building up her upper trunk muscles by sitting.........I can put my hands down lower and lower every day because she is getting so strong!

She is a smiling fool, too!!  I no longer have to work at it to get her to smile, she just does it!

It is great to finally get to see some of her personality emerging!  I have been waiting and waiting ( and not too patiently, either) for us to see something from her.  Some progress, some smiles, just something.  And we finally have it!  Those smiles of hers just light up my life!!

And here's a picture of her cutie pie sister, too!

Ds Clinic Day

Today we had a great visit to the Down syndrome clinic at the Children's Hospital!!!  We met with Dr. Hickey and I was able to get my long list of questions answered.  Then with the speech therapist to get some ideas of how to improve her tone with her mouth muscles.  She also showed us how to feed her when we introduce solids to her in a few weeks.  I would have never known that the way we fed Taylor is the wrong way to feed Madi.

Next visit was with Patricia Winders, who wrote the book , Gross Motor Skills for Children with Down syndrome.  Even though we have an awesome PT that we work with weekly, she just showed us how to tweak some of the things we were doing to help her a little bit better.  The fantastic thing is that she was impressed with the skills Madi is doing already!  She thought her hypotonia is very mild.  This is sooo awesome to hear!!!!

I definitely know that she is delayed but it is hard to gauge how she compares with other children with Ds.  And to be honest with you, it doesn't really even matter how she compares.  But the nice thing about hearing that her low tone is mild is now I have a general idea of when I can expect her to reach her milestones.  For example, children with Ds can walk anywhere between 13 months and 48 months.  Well.......there is a BIG difference between the two.  So, if her lack of tone is mild......I can probably expect that she will walk sometime around 2 years.  I certainly don't expect her to be at 13 months but unless something drastically changes, it certainly won't be at 4 years old.

Overall, she is doing really well!!!  Eating good, head control is good, she's tracking objects, grabbing at toys and her feet.  She's getting more social.  I don't have to work quite as hard to get her to smile!

I am just hoping I can stay on this "high" for awhile.  I know that I seem to have these "highs" but then sink back down and am worried about everything again.  If I am feeling low.....I just have to look at this smiling little face and it brightens me right back up!!!

Wordless Wednesday

Pictures from the last couple of weeks!

Twister Time!

Dressed as a fireman at the Children's Museum

Madi hanging in the stroller at the museum

Dressed up as a wizard!

Train conductor time!

What's in the cabinet?!?!

It's mom!!!!  I couldn't believe I fit in there!

Madi working hard at head control and sitting

Talking on the phone already!