Friday, July 30, 2010

in case you wanted to know ...

I wondered today if Emma is old enough to enjoy having her toes painted







She is not

:)

test results

I hate posting results when I'm not sure I understand what they mean, but you asked for it! :)

Emma's bones in her arms and hands are NOT developing typically, but it's not the fusion we were looking for. We're going to see an orthopedics doc in a couple of weeks to see what she recommends. Please pray that this is just another thing about Emma that is different but not going to get in the way of development?

And I'm frustrated to report that Emma's GI study was normal. I'm frustrated because Emma is still retching and tolerating less food than she should. If this study had shown that Emma's tummy is emptying into her intestines more slowly than it should, that would have been our answer and there would have been a drug to take care of that. Now we still don't know what's going on. We have a GI appointment coming up, please pray for answers?

Have a wonderful weekend!

Monday, July 26, 2010

Jesus said

Whoever welcomes one of these little children in my name welcomes me.

Mark 9:37

:)

Wednesday, July 21, 2010

ARGH!

:)

So when we were in Dallas, the GI doc we saw thought that Emma should be tolerating more food in a feeding than she is right now. She takes 85 ml 4 times a day, but usually retches after the feed, which is concerning and we're trying to figure out why and what we can do.

So the doc recommended a study for Emma where they feed her and then watch the food go through in radiology. She said that if Emma has gastric emptying issues, there's a medicine that can be given for that.

So the kids and I went to Children's today for our appointment. We were brought back to the room with the big imaging machine and the tech started describing the procedure by saying that they would syringe 120 ml of food through her Gtube over 10 minutes!!!!

[inner monologue, yelling: Um, NO! That's why we're here! She doesn't tolerate more than 85 over half and hour, so why on EARTH are you thinking she'll tolerate more than 100 in 10 minutes?!?!?]

I politely suggested that we need to use less than that and they said they'd need to call my primary pediatrician, who I knew was out of the office. So they tried Emma's GI and we had to wait for them to get back to us.

Since we also had an order to do an X-ray of Emma's arms while we were there, I asked if we could do those X-rays while we were waiting for GI to call back and they were fine with that.

There's a common condition with CdLS kids where the bones in their forearms aren't exactly how they should be. It results in kids not being able to completely straighten their arms. My understanding is that if Emma had this condition it wouldn't require surgery or anything because her arms aren't stopping her from doing anything. But she doesn't ever completely straighten her arms, and if that ISN'T because of the bones being fused, then we'd need to do some PT to help keep her from getting too stiff. So if she has the defect and the bones are fused, that's fine, if not, more therapy. Make sense?

So we went to a different part of radiology for the X-rays. The techs always underestimate how strong Emma is, so I always volunteer to help hold her down. They told me how they wanted Emma's arm positioned. OF COURSE, the want me to pin her arm down so it is STRAIGHT!

[inner monologue, yelling: UM. NO! That's why we're here!!! There's a chance that she has something with her bones that she CAN'T get her arms straight and attempting to do so would be VERY painful!!!! WHY DON'T YOU PEOPLE KNOW THESE THINGS?!?!?!]

Again, I politely suggested (over Emma's screams) that her arms don't go straight and isn't there another angle they could use?

They took about 6 pictures. In between each picture, they consulted with the radiologist to see if the image showed him enough ... while Emma was still strapped to the table crying ...

But the one time I did pick her up in between X-rays, the tech who strapped her down again got her MicKey caught under the restraint and it looked like he was going to yank it out! So I tried singing and stroking her forehead. But when Emma's lost it, she's lost it, and no amount of singing is going to make it better ....

But finally, the X-rays were done and GI called back with a more appropriate volume for the test. Emma did beautifully the rest of the time, smiling and playing with the techs in between images (every 15 minutes for 2 hours)

And Charlie was a ROCK STAR! He was so polite and played so well. We were in a waiting area for part of the time where they had a TV, but for the most part he just made do with the toys that were there and colored a picture and never once whined or complained. At one point the three of us just sat ourselves down on the floor and entertained ourselves with a slinky.

I really actually had several stretches of good times with my kids this morning.

BUT I'm struggling with that balance ... I HATE questioning medical personnel. They have degrees and experience beyond what I have and if they don't have information that I do have regarding Emma, it's probably not their fault. So I try to be polite and humble, but I refuse to be so timid that I let them hurt my baby girl. But is pain necessary sometimes in order to get the answers we need for Emma's health? I REALLY hate this part of the game...

Here's hoping we'll get some good test results soon ... thanks for letting me vent ... I'm off to find out why my princess isn't sleeping! :)

Tuesday, July 20, 2010

The Conference

Josh here. I haven't posted anything on here in a long time since Becky does such a good job, but I've been meaning to post this for a while.

If you've been following along, and of course you have. Why else would you be out here?....I digress. If you've been following along, you know we just (like a month ago now....wow time flies...and wow I digress a lot) went to our first CdLS conference in Dallas. It was....well, I still can't talk about it much or think about it without getting emotional. And if any of you have been around me in the last....going on 30 months now, you know I'm a pretty big rock when it comes to Emma stuff.......ya.


So I'm going to "borrow" the words of another CdLS parent, Rachelle Riedmiller. You can check out her little Joey (such a little man) at http://joeyswalk.blogspot.com/.


Have you ever been
to a wonderful place
Where all you need to get in
is a beautiful face?
Long eyelashes and
an upturned nose
Small hands and feet
there were plenty of those!
Eyebrows that meet in the middle,
developmental delays
Feeding difficulties and reflux
all cared for in different ways.
Thin downturned lips
all lifted up with smiles
To get to this place,
families traveled for miles.
Because once they get there,
they are welcomed and hugged.
And while they are there,
they know they are loved.
No shirt, no shoes
no problem at all.
Moms to the rescue
when diapers explode in the hall.
Feeding tubes and wheelchairs;
babies scooting on the floor.
Families sharing stories,
new found friendships galore.
No one pointing and staring
or giving you 'the look'
No need to explain -
you are off the hook.
Your child is my child
we share sorrows and joys
There is so much in common
with our girls and our boys.
Words of wisdom are offered,
as well as comfort and advice.
You will find encouragement and support -
a shoulder to cry on if you like.
When you are at this place
we'll call CdLS town,
Your spirits are lifted -
there is never a frown.
You wrap love in your heart,
your soul is renewed.
Everyone understands
and your worries are few.
So when you are struggling
and feeling alone
Let the memories of this time
comfort you at home.
Have you ever been to this
wonderful place?
I have -
and I will cherish each and every
Beautiful face.

Thursday, July 15, 2010

Lots and lots of pictures :)

Emma loves her shiny star from the CdLS conference ... sometimes I like to pretend that she's looking at it and missing her friends! :) I know I think of you guys often.
She's so big girl and she KNOWS it! :)













And I've definitely got my happy, playful Emma back!




This chicka thinks she's totally ready to walk! Nevermind the fact that she can't stand without support for more than 3 seconds yet :) Nothin's gonna slow her down!



And if the camera's out, the Monster is CERTAIN a picture MUST be taken of him as well! I'm more than happy about that, he's stinkin' cute!! :)






I am so blessed that my kids have such an awesome Daddy!
When Josh comes home from work every day, all he wants to do is just get down on the floor and play with the kids! The TV is pretty much never on (unless Charlie and Daddy are bonding over a little Wii game or two), and this Daddy just soaks up time with his kids who LOVE him!





(not really sure what's going on in this next pic, but evidently Charlie and Emma found something about Daddy's eyebrow that needed attention ...)



















And that's pretty much what our evenings look like. Unless, of course, there's "man work" to be done!


In which case us ladies stay inside and hang out










Or we watch the guys up on the deck.




Emma is FASCINATED by people's faces. She thinks it's AMAZING when I stick my tongue out.












Back inside after dinner ...
You see Emma back there, ready to pounce?



Charlie's wondering what I'm taking a picture of ...



and then she gets him!







Luckily the boy has a sense of humor about his sister's interest in him. Usually he does quite well, unless of course she's after a truck that was just very carefully loaded onto a trailer or something. There is defintely some of that typical sibling stuff going on, but for the most part Charlie realizes that Emma will move on soon and that it will be ok.








Oh, yeah, and I had a birthday. :) Charlie made me a cake. With sprinkles :)


So I guess, all in all, life's pretty ok.




I love my kids, I love my husband



They are all doing just fine





And even though some days the wheels may fall off my wagon a bit





We get back up and together, with God's help, we'll be ok :)


God bless you!

Wednesday, July 14, 2010

We're still here

This is my 3rd try at this post :)

I'll keep it short and sweet: I'm coming a little undone. We're all just a little exhausted and as a result, our brains are not firing on all cylinders.

Josh forgot to put our not-night-time-trained Charlie in a diaper on Monday night.

Not to be out-done, I couldn't find my keys one day when we were out and finally realized that the reason I couldn't find them was that I had left them in the ignition ... in the RUNNING car ... in the parking lot.

Josh couldnt' figure out where Emma's extension for her feeding tube was until I pointed out that it was already attached to her.

But that pales in comparison to the fact that I LEFT OUR FRONT DOOR OPEN when we went to Dallas.

Now, this is a little bit funny, but mostly just indicative of this mode we fall in and out of. For some reason, I'm apparently not recovered from ... well, a lot of things I SHOULD have recovered from by now.

I'm feeling much better today. I'm noticing (oddly enough) that making prayer time a priority DOES make a difference in my day. :)

But if you feel like praying for us, could you pray for some rest this weekend?

Thank you
God bless!

oh, PS, I'm really excited about my new camera and as soon as I figure out how to make it talk to our computer, I'll put up some cute pictures :) stay tuned!

Friday, July 2, 2010

I am honored and humbled and blown away at the incredible blessing it is to get to stay home with our kids.



Emma's a little fussy from a tummy bug she brought home with her from Dallas, so Charlie gets the bragging tonight.



We went to the zoo this morning where they have this amazing butterfly garden. Charlie just recently learned from a book that butterflies come from caterpillars and all that, so he was really excited to "show me and Emma" all about it. I was also actually pretty impressed at his careful stroller-pushing abilities.



I swear to you, the following conversation is an accurate re-telling of my 3-year-old son's interaction with a butterfly naturalist who saw him take an interest in a display box and walked up to talk to him.



Naturalist: "Do you know what those are? Those are caterpillars that are going to turn into butterflies!"


Charlie: "Is that a chrysalis?"


N, impressed: "Yes!"


C: "Cool! What kind?"


N: "These will become monarch butterflies!"


C: "Oh! Cool! Then that must be a milkweed plant!"


N: "You're right! That's the only kind of plant monarchs like"


C, pointing in another box: "Is that a different kind of chrysalis?"


N: "Yes, those are for [I forget which kind of butterfly]"


C: "See those lines on the top of the chrysalis? Is that the butterfly's abdomen?"


N, looking a little caught-off-guard: "Yes! When there are only a few more days until the butterfly comes out then the chrysalis starts to get kind of see-through and you can see the abdomen start to form near the top!"


C: "Is the when it gets transparent?"


N: "Um. Yes."



pause



N: "you are a very smart boy"


C: "OOOH, look! A blue one!!!" run, run, run away



Dude. I am in trouble!!!!



But tonight's bedtime discussion really blew me away.



As I've mentioned before, I really love Charlie's storybook Bible. It really does a great job of telling a lot more of the story than most other children's Bibles I've seen.



Tonight, Charlie wanted to read the "Jesus died but he didn't stay dead" story.



(that is, of course, not the proper name for the story. Charlie has summary names for each story. can you guess which one is called "stinky feet"? :))



So after the story (which Charlie loudly interrupted to chime in at the part where the angel says "Jesus is ALIVE!"), I asked Charlie which song he wanted to sing before sleeping and he said:



"We should sing 'My God is so Big' cuz he's so big that he even forgave the Leaders when they killed him. So we should sing that, k?"



K?



Got that? :)
Man, I love that kid. Thank you, God for my Charlie.

Thursday, July 1, 2010

Beautiful


This picture of Emma playing on the hotel room bed in Dallas makes me really happy - isn't she gorgeous!? :)
And it's really the only picture of the conference that I'm going to post tonight because EVERY other picture I have of the week has a non-family member in it and I haven't gotten permission to post them - but what's really cool is that the fact that I have no other pictures of our family alone just shows you something about the conference: We were never alone! If you walked up to a group of CdLS families, people we rarely holding their own kids. It was such a loving environment and I really miss my new friends.
And just to make sure I'm perfectly clear:
as much as the topics of the sessions at the conference scared and overwhelmed me, the children and families we met last weekend were
ALL
ABSOLUTELY
BEAUTIFUL!