Wednesday, December 30, 2009

Life with Lana today (3 years, 6 months)


Sleeping: Thankfully, bedtime has gotten much easier.  I think part of it was just a “stage,” or whatever you call it when your child inexplicably, temporarily loses their mind.  The other part of it was relatively simple…her sheets were cold.  I bought her a twin size electric blanket and put it on her bed.  When I put her in the bathtub, I turn it on and let it warm up her bed and sheets.  After I tuck her in, I turn it off so I’m not worried about it during the night.  She loves, loves, loves her “cozy” bed and will sometimes ask to go to bed early so she can get in it.  Funny!
Eating: Just in the past week or so, she has been trying to say she “doesn’t like” things.  I’m guessing she’s probably picking that up from friends at preschool.  We are just handling it like always….”That’s fine.  Try one bite,” and then we don’t push anymore.  I made a major mistake the other night….we had friends over for dinner, and they require that their children eat all of the veggies on their plate.  (They really do just put a couple of bites!)  This is not something we’ve ever required of Lana, but they were having a conversation with their son and asked him to eat all of his, and so I told Lana she needed to eat all of hers.  It turned into a small struggle; she did eat them, and then went on about her business.  However, later I regretted handling it differently than I ordinarily might just because we had company.  It was a reminder to me that every child needs to be parented differently, and I need to parent my child the way she needs, no matter what others are doing.  Because, of course, they are generally parenting their children in the best way for them.
Talking: I have been so proud of the kindness that Lana has shown around the house this month.  I literally can’t remember spanking her more than once in the past month.  She really has been respectful and obedient.  We are working hard on the “tone” of her words – i.e., not whining.  This is not something she does on purpose; I really just think it’s a sin she struggles with.  When we remind her, she can usually correct her tone.  Obviously she has more trouble with this if she’s tired or hungry.  So do I, if I’m being honest.
Discipline: My sweet girl…this month has really been a joy.  A few minor things here and there, but overall, she has just been a blessing to us in so many ways.  Discipline this month has been focused more on instructing her how to love God well, and how to love others well.  She’s been asking some questions that lead into great discipleship….”How do we get to heaven?” and “How can I do EVERYTHING the Bible says?  It’s got a lot of words,” and “What if I don’t want to consider my friend first?”  Sometimes as we’re talking and praying through the things she asks, I am reminded that her tender little 3 year old heart is struggling through things that lots of adults are struggling with, too.
PlayingOh Christmas time!!  Between the gifts from her grandparents and aunts and uncles, and the gifts we were able to give her through the generosity of Bay Leaf Baptist Church, Lana is having a blast playing with her new toys!!  Her favorites by far are her digital camera, her pop-up princess castle, her sand table (filled with gravel – I hate sand), and her indoor trampoline.  These are all wonderful things to get us through this remaining cold months!

Pretend has reached an all-time high at the Davis farm!  She is, of course, always the mommy – I am usually the daughter, Dan is the big brother, and Tucker is the little bitty baby brother.  The Daddy is at work.  She likes for us all to pretend we are kitties, too.  Her imagination is taking off, although she is always happiest when we are engaged in the pretend play with her.  She still doesn’t do very well pretending on her own.

Monday, December 14, 2009

2nd visit to CPD

This morning I took Tucker back to see Joan at the dysphagia clinic for the second time.  As soon as we walked in the door, the receptionist said, "Good morning, Tucker!"  I love that they pay such close attention to each patient.

Joan is the therapist we see, and the owner of the clinic.  She truly is wonderful.
This morning she did some tongue therapy, noting some improvement.  That was encouraging - we'll keep on working.  The goal is for him to allow us to depress his tongue with our finger instead of pulling it up high and back.

She watched him eat again, and within just a few minutes told me that she thinks his issue is primarily respiratory, as opposed to gastrointestinal.  She definitely hears his reflux, but his breathing patterns are the major problem she sees.  It's as if he can't eat and breathe at the same time...within a couple of sucks, his nostrils flare and he begins gasping for breath.  Essentially, he feels like he's drowning while he eats - no wonder it's been so tough for him! 

She showed me how to "pace" him while he's eating, which involves tilting the bottle so the milk is out of his mouth, but not taking the bottle away, giving him a chance to catch his breath.  She showed me how to read the smallest cues that he gives...incredible.  

She reminded me that Tucker is not the kind of baby that will let me watch tv or have a conversation while I feed him - right now, he's going to require my entire attention.  She also told me that for the time being, no one needs to feed him besides me and Dan (once he learns the new techniques).  

Because this is a respiratory issue, she said that she'll give him a couple of months for this to resolve, but if it doesn't, then she will send us back to the cardiologist to make sure nothing is going on.  

I'm so thankful that Dr. Dirk had the insight to send us to Joan at CPD - she really is a gift! 

Thursday, December 10, 2009

Life with Tucker today (3 months)


Eating: We’ve had quite a bit of difficulty with Tucker eating, although thankfully it hasn’t affected his growth any!!  We have been seeing a therapist at Carolina Pediatric Dysphagia, and are seeing some slow progress.  Joan (therapist/owner) believes that his eating issue is respiratory – you can see when he eats that his sucking/swallowing pattern is arrhythmic.  She has given us some techniques to work on, and we go back at the end of the month for a barium swallow study.  The best news of all, though, is that just last night Tucker ate at 7:00 p.m. and went to bed, and didn’t wake up to eat again until the next morning at 7:00!!!!  Hallelujah!  He’s been eating on a 3-3.5 hour schedule, but we’re going to try to stretch him out to 4 in the hopes that feeding him will be easier if he’s hungrier.
Wake time:  Such a happy boy we have…when he is awake, he’s content to just look at you, although he often will let out a squeal to get your attention.  He loves to be talked to, and is very verbal for his age, making lots of squeaks and grunts.  He’s generous with his smiles, too!  He still can’t stay awake for much longer than an hour, although I think he’s transitioning to staying awake longer these days.
Sleeping: Oh, how exciting that night of uninterrupted sleep was for us!!  We hope that pattern continues, although we are leaving in 5 days for almost 2 weeks of travel, so we’re not counting on it.  We’re still swaddling, simply because he sleeps longer that way.  He has begun waking up happy in the morning, smiling and cooing in his bed until we come get him.  I LOVE that!
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Tucker started going to preschool with me, and he is doing really well!!  His teachers are so precious…just really invested in caring for him well.  They try really hard to keep his routine stable, while doing whatever he takes for him to have a happy day.  Best of all, they are honest with me about how his day was – I need that!!  He sleeps in the swing there, which is fine with me.  Eating is a disaster at preschool – he just screams and screams.  Hopefully we’ll make some progress with the dysphagia therapy, and he’ll be better after the new year.

Day of specialists

I told my friend Mary Katherine yesterday that I have two healthy kids, and am just so tired of taking my healthy babies to see doctors.  She was so kind to remind me that I'm taking my kids to these doctors to KEEP them healthy.  I am so grateful that we live in an area where we have access to wonderful health care.

We started yesterday morning with an appointment for Tucker at Carolina Pediatric Dysphagia at 8:00 a.m.  Thankfully, my friend Allison agreed to keep Lana for us and take her to preschool so that Dan & I could both be with Tucker.  We saw a therapist named Joan...what a wonderful, calming woman.  She watched several videos we had taken of Tucker eating (or trying to!), checked the structure of his mouth, and observed him eating.  
She immediately noted his severe silent reflux, and pointed out to us several times that we could actually hear him refluxing.  She suggested trying a different med...one that is time released, and giving him infant probiotics to help heal his GI tract. 
Another major problem she noted was his tongue placement.  Here's how she explained it to us: most babies curl their tongue around an object placed in their mouth, whether it be a finger, a bottle, a toy, etc.  Tucker, however, has a tongue aversion, and pulls his tongue back and up.  When he's eating, this means he is compressing the bottle nipple, but not actually sucking.  He's essentially "squishing" the milk out and drinking it instead of sucking it out.  (No wonder we had latching on problems when nursing!)  At this point, this is not a major problem because even though it makes feeding frustrating for all of us, he is still intaking the right amount of nutrition and he’s obviously thriving.  However, she said that if we don’t teach him to get used to having things on his tongue, spoon feeding will be a nightmare!  Her recommendation was for us to put our clean finger in his mouth several times a day and just rub back and forth across his tongue. 

The last thing she pointed out to us (and the one I’m most concerned about) is that he strongly prefers to turn his head toward his left, so much so that his head is becoming a bit flat on that side.  This was probably a preference he developed in the womb – that sometimes happens when big babies are tucked inside mama for 42 weeks!  This prolonged turning of his head could possibly mean that the muscles in his right shoulder are lengthening, and the ones in his left are shortening, and when he tries to eat, it causes his discomfort.  That, combined with the pain of reflux, is what makes eating a disaster for him.  She gave us some PT suggestions to use to gently stretch his head toward the right.  This morning we discovered the most effective way to encourage him to do that – we turned on cartoons and put them on his right side…you should have seen him turn his head!

We are going back to see Joan again on Monday morning. 

After leaving Tucker’s appointment at 9:30, I went straight to work and worked until noon, when I picked Lana up from her classroom and took her to her pediatric urologist appointment at Duke.

Here are some of the concerns we’re having with Lana: after her third and latest UTI (around Thanksgiving), she has been really struggling with some potty issues.  She will occasionally wet her panties…not a full fledged accident, but almost as if she can’t make it to the bathroom in time.  She sometimes has a period of time where she potties in “clusters,” going to the bathroom as many as 5-7 times in 15 minutes, almost as if she’s not completely emptying her bladder.  At first, I thought this was a ploy to get out of bedtime, but now it is happening even when she is engaged in something she wants to do. The other day it happened while she was playing with her dollhouse, and she was in tears over it.  We have been dropping off frequent urine samples, so we know she doesn’t have an infection. 

Thankfully, the pedi urologist at Duke had a cancellation and we were able to get in today.  She talked with Lana & I about what has been going on, tested Lana’s bladder to see if was emptying, and talked with me about some options for treatment.  One of the immediate things we are going to do is a total body clean out…and yes, that’s exactly what it sounds like.  Sometimes bladder problems are related to bowel problems, and that’s a possibility in Lana’s case.  On a scale of 1 to 7, with 1 being extremely constipated and 7 being not constipated at all, Lana is a 1.5.  We’re going to do the clean out, and the maintain her bowel health with daily Miralax.  We are going to Duke on January 4th for a kidney ultrasound and a VCUG to test for reflux in her kidneys, and then we’ll meet with the urologist again and go from there.

Monday, December 7, 2009

Dysphagia?

Tucker is so happy.  Truly, if he is awake, he is smiling, cooing, and giggling at whoever is around.  He finds totally happiness in watching us go about our day or looking at his mobile.  He is really just a happy baby.

Until it's time to eat.  And then he becomes a 

back arching

screaming

crying

hands flailing

terror.

We've tried everything.  Reflux medication.  Different bottles.  Mylanta.  Rice cereal in the bottle.  No rice cereal in the bottle.  Swaddling him while he eats.  Walking him while he eats.  Praying out loud while he eats.  No joke.  

Nothing works.
  
Someone suggested trying a chiropractor.  We're generally pretty mainstream medicine people, but we're desperate, and willing to try almost anything.  The pediatrician is NOT willing to try that, however, and has thus far refused to give us a referral.  We're still working on that.

He did, however, give us a referral to Carolina Pediatric Dysphagia.  They treat children with swallowing/eating disorders.  

When he suggested it, I almost laughed at him.  I couldn't imagine how swallowing would be Tucker's issue...he's gaining weight just fine, and he does eventually swallow.  So I did some research, and he meets nearly all the criteria: crying/fussing during or after feeds, gagging/coughing during feeds, hiccupping during feeds, seeming desire to eat and then refuses, requiring distractions in order to eat (patting and rocking, in his case), arching, etc. 

So I called their office, described what Tucker was doing, and they said, "That's exactly the kind of child we treat!  Merry Christmas, mama, we're gonna help your boy eat!"  
We have an appointment on Thursday, December 10 at 8:00 a.m.  I'll be very interested to hear what they have to say.


Sunday, December 6, 2009

Touchable nativity

We believe in having "touchable" nativities in our house.  


One day, maybe when we're out of seminary, I want to have a Willow Tree nativity.  The whole, $300, gorgeous thing.  That will NOT be touchable.  


But, as I was reminded while reading a blog I follow (www.allthingshendrick.blogspot.com), Emmanuel means "God with us."  So we have several nativities that I put out for Lana to play with, and she has already spent HOURS with them.  

Baby Jesus and others getting a ride in the Hope Depot wagon...love this!<br />Emmanuel = "God with us."

Tonight I was folding laundry and listening as Lana pulled around her nativity characters in a wagon:


"OK, angel, scoot over and make room for the donkey. Shepherd, please quit falling over. No, baby Jesus can't go in the back!! He's the most important guy here!!"