Wednesday, May 25, 2011

Urgency



Some friends of ours at church have family connections to Joplin, Missouri where there has recently been devastating damage from tornadoes.



These friends took up a collection this week of basic supplies to bring down to help those affected. You know, bottled water, clothing, diapers, that kind of thing.



I showed Charlie some of the 'before and after' pictures that were posted from the damage and told him that we were going to go to the store to buy some water to send down there.



"Why?"



I did my best to explain what a tornado was and the scope of the damage. I think the concept that finally landed was that "the grocery stores got broken" and people can't get food and water by just driving to the store and they need help.


He instantly ran to the car.



When we got to the store, he grabbed my hand and said we had to run into the store



"Quick! Before they get thirsty!"

Monday, May 23, 2011

My To-Do list

I'm having one of those days where my "To Do" list looks like this:





Order Emma's monthly tubes supplies before noon when shipping orders go out





Drive to the Parks and Rec office to sign Charlie up for T-ball





Call and reschedule about 5 Emma appointments because the T-ball session I had planned to sign Charlie up for was full





Pack lunch for Charlie to eat at the table with Emma during her lunch-time feeding therapy





Call and bug surgery coordinator about Emma's upcoming ear surgery which still isn't scheduled





Communicate with the Darling Husband about whether or not we're having dinner together and, if so, get something in the crock pot





Find a minute to get down to the laundry room to move Emma's disgusting "exploded diaper" laundry from "soaking" status to actually, you know, clean it





And, sometime in between the drive-thru for a Diet Coke and being impatient with Charlie because my bladder was dangerously close to full capacity while walking into Emma's feeding appointment, I realized that I needed to add one more thing to the list, to be prioritized even above my own lunch:







Build a fort with my son in the living room









Check and check :)




Tuesday, May 17, 2011

Common little everyday miracles

Emma played in a ball pit today at preschool and didn't cry about it


As a matter of fact, today was Emma's first day back at preschool and her teacher said she didn't cry at all!



Emma ate carrots today at feeding therapy and didn't even need a change of clothes when she was done!




Charlie got to feed Emma at therapy today. They both did GREAT!




Emma went for a lot of the morning without a drool bib. I really see her improving in a lot of areas with this therapy that she's doing.






And ... drumroll please ....




Emma played at a park today!




I remember being at a park once with Charlie when he was really too little for it. I helped him sort of walk around in the mulch, but he couldn't climb or slide without my help yet. I felt envious of the mothers sitting on the bench at the edge of the playground whose kids were old enough to just run and play together without supervision. For Emma, this phase of not being able to play at a playground has been very extended. It's been starting to sink in more lately that two and half years is a long time to have your "baby" on your hip while all the other kids play.



But today we went to a park for a picnic lunch and playdate in between preschool and feeding therapy. While we ate sitting down on the grass, I put Emma down to see what she would think of sitting on grass. Last summer it was too much of a sensory experience and she cried. But this summer she sat and smiled and played with grass!



Once we were done eating, the big kids went to play on the playground. I expected Emma would want to sit on my lap playing with a leaf while I chatted with the other mom.



But Emma sort of started to "butt scoot" her way toward the playground! So I pointed this out to Charlie. I said, "Now, buddy, if you want to just go play, you can, but Emma looks like she wants to play with you, so would you like to carry her over to the mulch?"




He said yes and picked her up and brought her over to where they were playing.



(as a side note, yes, i let charlie carry his sister if i'm right there watching. yes, he's only 4. but she is as strong as any 2-year-old i know and she's only 17 pounds, so they are quite a team. she hangs on and gets this little content smile. it's a good thing ... don't judge me:))



She LOVED it! She cruised around the play structure and sat and examined some mulch and scooted around and got DIRTY! :) It was wonderful!




















And as you can see, she actually ventured pretty far away from Mommy.

I almost cried :)

Saturday, May 14, 2011

CdLS Awareness Day


The hair, the eyebrows, the sweet little face and tiny hands and feet ...

I have a beautiful daughter.

But to a trained eye, some of the things that I think make her beautiful also tell a tale.

Those traits told her doctor that she has CdLS.

I struggled for awhile, learning to love Emma's beautiful hair even though it meant that she would be different. But now I understand a different kind of love.

One of my CdLS Facebook friends said something really profound today; she said that having a special child without a diagnosis is like having a special gift that you just can't open.

I can't imagine the frustration of not knowing.

And that's part of what CdLS Awareness day is about. One publication I saw estimated that there about about 20,000 children in the US with Cornelia de Lange Syndrome but that many have not been diagnosed because of how rare this condition is. I can't tell you how many of Emma's specialists I educate because they have never heard of it!

So if you know a family searching for answers with a child who looks like Emma, maybe have them check out www.cdlsusa.org? We are so blessed by all the support we have found there!

(Picture copyrighted - Tamara Fladung Photography)

Wednesday, May 11, 2011

Reality check :)

Emma is seriously being such a ROCK STAR in feeding therapy right now!

But to be fair to HER, I need to make sure I temper my expectations.

Okay, so think about how hard a baby has to work to either nurse or drink from a bottle. Think of all the muscles that are involved with getting nutrients that way. They have to know not to breathe when they have milk in their mouth; they have to coordinate all the sucking and swallowing and breathing LONG before they can even think about it. It comes naturally.

To most babies

Emma's feeding journey is a little different from many CdLS kids with feeding difficulties in that she was not allowed to even try to eat for the first several weeks of life. She had had major surgery on her stomach and a hole in the roof of her mouth.

And then fast-forward to last May when she had facial paralysis on her right side ... two months ago, her ENT speculated that the right side of her face might still be "tingly," feeling like your leg feels when the circulation is starting to come back after it has fallen asleep for awhile.

So her mouth and swallow muscles are woefully under-used. And yes, of course there is a behavioral and cognitive piece to her feeding difficulties, but even if we resolved those tomorrow, she still is nowhere near ready to use those muscles to take in all her nutrients.

She had a great feeding session today, eating like a rock star for about 30 minutes. She ate about half a jar of baby food ... you know, minus whatever ended up on her bib and chin and elbows :)

But that exhausts her. She will sleep very well this afternoon. :)

And half a jar of squash doesn't have enough calories to drop her tube feed by even half an ounce.

So while this is super exciting (for both me and Charlie, who got to feed his sister during therapy today and they both did great!), like I said, we still have a LONG way to go!

But she's cute, Charlie's sweet, and God's good, so I can be patient :)

Friday, May 6, 2011

Eating like a big girl!

Emma has been tube-fed since birth. She was born with her stomach behind her left lung and with a cleft palate, so the deck has been stacked against her eating since day 1.



We've had seasons of good eating and seasons of TOTAL oral aversion, but right now we're in a really good place!


She just completed the first two very intense weeks of a protocol called Vital Stim. They use electricity on her neck to stimulate her swallow muscles. For Emma, this therapy has worked like magic! I really think the help with her swallows is "cue-ing" her to eat and helping her feel more safe to actually move the food to the back of her mouth and swallow.





So if I've ignored you lately, this is why :) Emma has had at least one appointment a day with this. Toward the end of last week, Charlie started to show signs of missing Mommy, but nothing a little TLC couldn't cure. (Remember this is the boy with the emotional maturity to just say, "Mommy, I miss you" before the wheels totally fall off the wagon? Man, I love that kid!)


I took this video last week, but I didn't want to post it for fear that this was just a 'honeymoon' in her therapy. Now, yesterday and today she was lunging for the spoon in between every bite, taking big mouthfuls of food at a time. It's been so great.



I'm so proud of my baby girl! We've got a long way to go on this one, still, but she's worked so hard and made such great progress, I am one happy mama!!

Wednesday, May 4, 2011

Happy Wednesday

These shoes are made for walkin'! :)



Emma recently got some new foot and ankle supports. Some of you who see us often are thinking, "New? I didn't realize she had old ankle braces. I never saw her wear them!"


Well, yeah, you're right. She didn't wear her big old AFOs because she pretty much screamed any time they were on.


And I think the problem was that they restrained her ankle movement so much that she couldn't crawl or pull to stand or anything. I don't blame her for hating something that stops her from moving around!


So her new PT at school suggested something smaller that will give her support but still allow her foot to move the way it needs to for crawling and stuff. Emma LOVES them!


















She seems much steadier on her feet when they are on, which is helping her be much more confident moving around. She still always has her hands on something for support, but she seems much stronger, cruising all over the place. I've caught her standing by herself for a split second at a time, too ... SO NOT READY for this little girl to walk!! :) AND I can't wait, all at the same time :)








And Charlie is just too silly not to share. I love these kids.


God bless you on this beautiful sun-shiny day! :)