Wednesday, September 30, 2009
Anyway, Emma's different reflux meds do seem to have helped in the last couple of weeks, but the retching at the end of her feeds is still something her doctor is wanting to look into, just to make sure we rule out something serious going on.
So tomorrow morning Emma is having a G-tube Injection Study done at our friendly neighborhood Children's Hospital. It's a lot like a swallow study but she doesn't swallow enough liquid so they are going to put the contrast stuff through her G-tube and watch it work it's way through her GI track and make sure her Nissen is doing it's job. I think he wants to make sure that the liquid isn't coming back up into the esophagus and gagging her.
Luckily, though, we don't have to put her under for this one. They'll do an upper endoscopy when she's under for her palate repair, but she can be awake for this one.
Please pray that the results of the study are good, please pray that the study accurately shows what's going on, and please pray for little Emma during the study. I can't imagine this is going to be a lot of fun for anyone involved! :)
Tuesday, September 29, 2009
But I found it, so we're back! :)
Life is "normal" around here, nothing huge to report, but lots of pictures and videos to share.
Emma will be drooling (which means "drooling" out her nose, too) in all of them as she's currently working on a couple more teeth. Specifically, she's working on the top "fangs"! Nothing else on top yet, just the "fangs"! ummmm, would anyone judge me if I took advantage of that for Halloween? :)
These next two pictures show Josh in his natural state these days. He LOVES his kids, but he's very tired.
And no, Charlie ISN'T playing a game on Daddy's iPhone, why do you ask? :)
Up next, we're back to "Mommy's rainy day activities"
I told Charlie his crocs were too dirty to wear inside, so he asked if he could wash them. YES! Yes you can!! :)
And finally, here are some videos of the kids being the kids.
I should explain that yes, Emma is just sitting on the table while the rest of us eat. When she was having tummy issues a couple of weeks ago, she became aversive to anything having to do with eating. Spoons, her tube, her Bumbo, anything. Luckily, she'll still accept a finger or washcloth or whatever in her mouth when it's NOT eating time, so we're still avoiding too much oral aversion, but anything else still equals pain in Emma's mind, even though her tummy issues are pretty much resolved.
So we take baby steps toward getting her back to where she was. She'll eat some spoonfuls of baby food orally if I'm holding her, but I'd really like to get her back into a high chair type setting, so we sit her NEXT to her Bumbo and let her play with spoons and such. We can get her into her Bumbo for a couple minutes at a time a couple times a day, but she still won't eat there.
But in the meantime we have an adorable Emma centerpiece!
Monday, September 21, 2009
Holy cow, there's some good stuff in there! :)
Before you go on, click here and read the passage. You'll recognize it, I'm sure.
I went on our church's women's retreat this weekend and this passage was the theme of the weekend.
We were talking mostly about living lives filled with contentment. We were talking about what in our lives hinders contentment and I was reminded of a very small event from last week that I wanted to share with you to try to encourage you this week.
"Don't be anxious, but ... with THANKSGIVING present your requests to God"
Charlie and Emma and I were at a park. Charlie had gone down a slide and I was sitting on a blanket playing with Emma. Charlie called, "Emma, come and go down the slide!" So I picked up Emma and climbed the ladder and sat with her in my lap at the top of the slide. Charlie was at the bottom saying things like "come on, Emma! you can do it! I'll be right here waiting for you!"
It was a beautiful moment ... the kind where the following kinds of thoughts ALWAYS enter my mind:
yeah, this is great this year, but what about next summer? will emma be able to climb up the ladder by herself before she gets too heavy for you to carry her up? will charlie realize that emma doesn't know he's calling her and then he'll loose interest? will emma develop behavioral issues that will eventually make it impossible for us to even GO to a park?
and so on.
So I was clearly and consciously faced with a choice. Do I enjoy today or worry about tomorrow? How do you push those thoughts out of your head?
Paul says "I have learned the secret of being content in any and every situation." (Phil 4:12) He says to not be anxious, but thankful. Wow, that can be hard ... but then he says that he can "do all things through Christ who gives me strength"
which, side note, was the verse I claimed and recited over and over when I was in labor with Emma and knew that she wasn't coming home any time soon
So sitting on the top of the slide, I silently and quickly thanked God that THAT moment was good and gave tomorrow to Him. And the peace of God that passes understanding filled my heart as Emma and I went down the slide.
Have a GREAT week!
Wednesday, September 16, 2009
Tuesday, September 15, 2009
But I still made him vacuum the floor after his nap. He insisted upon wearing sunglasses.
I love my children :)
update: Josh says that I should clarify for those who don't know that Charlie LOVES to vacuum: I didn't really MAKE him vacuum. The picture was just funny :)
Friday, September 11, 2009
God blesses us all day every day whether we recognize it or not. I am CHOOSING today to be thankful and to enter in to these blessings.
Thursday, September 10, 2009
Like, you can't prepare for moments like Charlie telling Emma's nutritionist that sometimes he put poopers in the potty and sometimes he puts poopers in his diaper and last time he put poopers in his diaper they were Blueberry Pie Poopers.
There is no instruction manual for moments like those.
And there's no instruction manual for an Emma, either.
So when the Pediatrician Who I Love suggested Emma be followed by PT and realized the school district wasn't already doing it so suggested a great therapy center not far from my house, I of course said, "Ok, what's the phone number?" Improv mode does that - you just react and do what's in front of you. You don't think about other options
Then I got stressed about the number of appointments increasing ... which meant I had to get on my blog and whine about, cuz what else you gonna do? :)
Thank God for my CdLS friends! Seriously! You all are such a blessing in my life!!!
I posted that we were adding appointments and you commented back wondering why the school district wasn't doing PT ... and while we're on the topic, why isn't the school district doing feeding therapy in your home?
The answer, embarrassingly enough, is "because I didn't ask."
Our new OT from the district came for her first visit today and we had a good meeting, and I asked if the district could do PT - the answer was yes. Then I asked if we could do some of Emma's feeding therapy in our home through the district - again, yes.
(insert angels singing the Hallelujah Chorus here)
But I just want to you know that the inner workings of the school district is not the point of this post! For all you "normals" out there (tongue firmly planted in cheek!), if you're not sure whether something your pediatrician has said is practical for your family, it's really easy to ask a neighbor, church friend, family member, grocery store clerk, etc, how they did it and get a wide range of advice. I remember trying to get Charlie to sleep through the night and asking everyone I knew how they did it and at what age and all that (not that I took any of their advice, but that's a whole 'nother story). With Emma, not so much.
But I will always cherish the fact that I have this online community where people talk about sibling relationships between special and typical kids and feeding ideas and therapy regimens and are brave enough to comment on my blog challenging me to make sure I've explored all possible options when things are getting hard. I post about appointments getting to be too much, you tell me to check the district. I post about trying to keep formula fresh in the middle of the night, you say put it in a cooler and sleep through the night.
Thank God for the Internet. Thank God for community. We are so blessed to be so supported!!!!
... and Thank God for my mother! I got a nap this afternoon :)
Tuesday, September 8, 2009
But of course something new is added. Dr R feels that Emma's diagnosis alone warrants a PT evaluation, even though she said her development looked great to her. So we're adding more appointments to the schedule ...
Charlie will love it
He does REALLY REALLY well being dragged to all these appointments, but I could tell today it was starting to wear on him. "Watch this, Dr R!" (spin around in a circle) "Dr R, did you know I know my letters now?" and my personal favorite: "Mommy, do you see me? Can you see what I'm doing?" while lying under the chair with his feet on the underside of my seat. This is the first time that I've really noticed him communicate quite this clearly that he was not up for this today. Usually he's happy to play with the toys and color and interject small comments here and there but today was a little rough.
I told him he could show Dr R his letters skills at the very end of the appointment, which held him patiently captive for almost enough time :) He really does do a GREAT job, but it's a lot to ask for a little dude.
Adding PT to the schedule should be no problem at all ...
K, I'm done whining now.
In terms of statistics, Emma looks great! She's 10 pounds, 13 oz (55% on CdLS chart), and almost 25 inches long, up 2 inches in the past 3 months (95% on CdLS). She's growing nicely, and Dr R actually called her "Strong as an ox" :)
Charlie really is doing well, too, but today I'm just a little down about it all.
Monday, September 7, 2009
After they left early today to get ahead of traffic, we had a quiet Labor Day. The 4 of us hung out at home for awhile and then went to my mom's for an impromtu BBQ.
Don't let the little boy and his stuffed animals fool you (this, by the way, is Suppy the Puppy ... he was named this week ...)
This little dude is ALL boy!
Charlie and Daddy had a great afternoon of playing catch today after Charlie found an old baseball mit in the shed.
And what boy doesn't need his own glove??
He was so excited! He and Daddy played catch in the backyard for quite some time today. Can you get more wholesome American than that??
But of course there are also trees to climb!
Mommy was firmly informed that "Nana's gonna do it!" when it came to helping climb.
You go for it, little man! I love seeing my Charlie be a true BOY!
Meanwhile, Daddy and Emma were bonding in the shade on the patio ....
I walked over to see what the giggles were all about and this was the sight that greeted me:
Daddy tried to offer a finger instead:
But really, God's already there, He already knows the answer, our family is in His hands and He has proven His faithfulness time and again. So really, I guess the thing to pray for would be for Mommy to stop worrying so much!! :)
Saturday, September 5, 2009
So I guess a dip in the roller coaster caught me off guard.
Emma's feedings are not going well. She's not orally averting to anything but food (and sometimes I'm not really sure how she knows the difference, but that's a whole 'nother story). But after about 10 mls (out of 70) of her bolus feeds she moans and cries and arches her back and acts REALLY uncomfortable. Then at the end of a feeding her reflux gagging and retching (Nissen = can't puke, thank goodness!) are really bad. And about 5 minutes after the feeding is over, she's back to her happy, playful, giggling, "crawling" self.
We have an appointment at the GI office (nurse practitioner; we could get into the Dr I Don't Like until the end of the month) this coming Friday so hopefully we'll get some answers, but in the meantime, I'm not in a good place with this!
I'm hopeful that Zantac just isn't doing the trick for her anymore and they can switch her meds and all will be well, but I know reflux isn't something to mess with!
And what's really hard for me right now is there are bells going off in the part of my brain I have come to label "Mommy's Instinct" that says this is not good, but I still haven't learned how over-reactive those alarms are yet.
Maybe when she has her well-child visit on Tuesday our primary Pediatrician Who I Love will have an easy answer and I'm just over-reacting.
But it's SO hard not knowing.
And I'm sad I can't fix it NOW.
I know that set-backs like this don't surprise the God of the universe, and I trust Him completely, but that doesn't mean we can't whine a little sometimes, right? :)
Tuesday, September 1, 2009
"(sigh) well, you can have animal crackers if you really want to, but I was thinking we could do something really special at the grocery store today and let you have an APPLE!" (can you believe this worked???)
"As much as I'd love your help vaccuuming, Emma might get scared of the loud noise of the vaccuum and might need her big brother to tell her it's ok and not scary so can you do me a favor and go talk with your sister instead?" (Emma was across the room army crawling, having scooted her hearing aid off and therefore oblivious to the loud noise, but this totally worked, too :) He's pretty good at "going and talking to" his sister.)
In other news, while making lunch today I left Emma sitting on her blanket in the living room playing with a toy. I looked a few minutes later and she had somehow traveled about 6 feet to get a different toy. Mommy's TOTALLY not ready for this, Emma!!!!
I love my kids :)