22 months!

Could she look more grown up in these pics???

It's hard to believe that the next time I do an update on this one, she will be TWO YEARS OLD!  I feel like it has flown by in a heartbeat.  I look at her newborn pics and can hardly remember holding that tiny baby.

So, what's up with you, Miss Delaney?!

Height and Weight:  When you were sick last week, you weighed in at 25.5 pounds (50.09%), and this week you weighed in at 25 lbs, 14.1 oz.  Glad to see you're eating again...  Good for you for not letting it get you down.  They measured you today at Texas Children's and said you were 2 feet, 8.76 inches (39.58%).  I think you are a little taller though because you kind of squatted down a bit when she started lowering that plate onto your head.  You did NOT like that at all.  Can't say I would feel any different.

Clothes:  You can wear most of the 18 month clothes and all the 18-24 month stuff.  I bought mostly 2T for winter, but they say they are for 30-33 lb kids, so beef it up a bit, will ya?  We got some really cute stuff you need to fit into soon.  Shoes, oh the shoes--you can wear some 5s, but I am beginning to get you 6s.  We even have to send one pair of 6s back because they are too tight.  I think we have a width issue with those little piggies.  Not judging, just noting.


Food:   You have become more picky in your older age, and less interested in eating.  You will eat salad, which is more than I can say for your brother.  However, your favorites are scrambled egg, mandarin oranges, refried beans and cheese.  You are kind of over the bread thing, so grilled cheese sandwiches don't do it for you any more.  Good for you.  Bad for me.  Meat consumption is unpredictable and determined on a case by case situation.  You will and have eaten chicken, pork and beef, but you don't seem to "want" any of them regularly.  Your brother gobbled up those Gerber pre-packaged toddler meals.  You, my dear, seem to think you are too good for them and want no part. 


Play:  You are starting to branch out with what you will do to consume your time.  You like a few more toys, although now you have made it clear you have no interest in sharing once you get something, and you may or may not be inclined to just walk up to what someone else is playing with, point and shout "Mine!" whether it actually is or not.  You LOVE music.  You will jam out in the car with a little headbobbing action.  Super cute.  Oh, look, I happen to have a video.

Somebody loves 90's on 9 (thank you Sirius, and thank you daddy for bringing back some of mommy's favorites.)

It's so much fun when you and Justus both go to "dancing" in the back seat.  He is still your favorite play thing, but you have started to  bicker a bit (see earlier statement on "Mine!").  He is tolerant and still loves you very much.  He has learned the art of distracting you with something else.  Too bad for him you are about grown out of that stage.  You are also our little daredevil.  You have no fear and you try to climb everything.  This combination makes me nervous and I feel like I should start planning fastest routes to the ER in preparation of what may be to come.  Speaking of climbing, you are starting to climb on the couches and beds in the house, and have no problem asking for "Hewp" if you need assistance.  This is cute.  Until you go up and down about 15 times in a row.

Talking:  You have become quite a chatterbox!  I love it.  You have started adding on the name of the person you thank, so you will say "tank you, mommy" or "tank you, daddy" which is beyond adorable.  You are also a big fan of "I got it!" or "I did it!" when you have succeeded.  I love it and am so proud of you--even if you've just knocked over something I asked you to leave alone.  Your visible pride in yourself when you do something you have been wanting to do is inspiring.

We also went to Texas Children's for your annual ENT appointment yesterday, where they did your hearing test and we met with the good doctor V (not to be confused with the good doctor H, your pediatrician).  Dr. V was his usual barrel of laughs (great doc, but seriously the least enthusiastic person I've ever come across), and your hearing test came back fine.  They said your hearing in your right ear is in the normal range.  The testing wasn't as precise as the ABR we previously did, but at least you didn't have to have anesthesia this time.  They did some behavioral testing, and noted that it's possible that in some situations, you may have been ignoring them as opposed to just not being able to hear them.  No. Way.  An almost 2-year-old ignoring a grown up?  Shocking!  They acknowledged it's a pretty high liklihood that it happened that way from time to time during the testing, and they take that into account.  Well, that's good!  All in all, a good visit.  We just have to be vigilant about watching your speech development.  It's times like this that I am glad you are at daycare and are surrounded by other kiddos your age, so we can get a good comparison for your speech.  Know that we are doing everything we can to give you the best opportunities to succeed!

Delaney, you continue to be the light of our lives with your vivacious spirit and warm heart.  Despite your tendency to hit when frustrated (I suppose I prefer this to biting--the evidence doesn't last as long), you are a very kind child, but the less (hyper)sensitive of our two.  You are a tough cookie, and tolerate a lot of bumps and bruises in your effort to hang with your big brother.  You love to laugh and to make people laugh with you.  We are starting to see some of the frustrations of the "terrible twos" setting in, but are certain we will all survive.  You just keep being you and letting us love you.

Next order of business:  Plan your "Goody-TWO-Shoes" birthday party!

Speak up--there's something in my ear

I know what you're thinking:  Karen, again with the ears? 

Yes.  Always with the ears.

It's kind of our thing.  Apparently.

Because of his surgery last summer and the resulting big hole in his left ear and the tube in his right ear, Justus was recently fitted for custom earplugs for his swimming pleasure (and the preservation of my sanity) this summer.  Yay!  They aren't in yet, but they will be red/blue/purple swirled together.  He is super excited for them to come in.  This is him getting fitted for them.  He thought the pink foam was really cool.  Note that it is pink.  That will be important later.

When we first went in for him to be fitted a couple weeks ago, he apparently had an ear infection in his left ear (surgery ear) and we didn't know it.  So, we had to do antibiotic drops for a week, and go for a recheck before they would do the molds.  He was disappointed that we didn't get the earplugs right then.  Last Friday was the big day for the fitting and he's been talking abou them at least daily since.  Lord, let those plugs get here soon!!

So, this week, he's mentioned from time to time that his ear was itching or bothering him a bit.  We figured it was still just from the ear infection.  But, it seemed more than usual post-infection, so I was actually thinking of calling the ENT again just to run it by him.  I'm somewhat hyper-sensitive about that left ear.  Or, so I thought I was.

Last night at dinner, Justus mentioned his ear was bothering him and itching and said it was "the hard pink shiny thing."  I thought he was talking about the PINK foam from the fitting.  He mumbled something about the hard pink shiny thing with the grey back.  Didn't know what he was talking about, moved on.

After I put Delaney to bed, I went in to Justus' room for prayers, where he and Kidd were reading in bed.  Since they were mid-book, I went to snuggle up next to him and listen to the rest of the book with them.  Then, I saw this:

I freaked out almost broke into tears, took a deep breath, and hollered at asked Justus what was in his ear.  He immediately cried and covered his face with the sheet (certainly not at all because of my reaction).  He said he stuck it in there "yesterday."  So yes, "hard pink shiny thing" exists.  In his ear.  Where he said it was.  oops.

I get him up and tell him we're going to the ER, to which he says he doesn't want to go and wants me to get it out with scissors.  Hmmmm....NO.  On the way to the ER, I find out the rest of the story.  He put it in his ear on MONDAY and did it because he thought it was an earplug!!!!  Yes, 4 days have gone by as it is now Thursday evening when it's discovered.  I'm officially the most inattentive mother ever.  I asked if he told a teacher, which he said he did and she told him not to put anything in his ear anymore.  Methinks he failed to mention that it was stuck there and wouldn't come out.  So, while I continued to overreact at the very thought of a foreign object in the ear that has a huge hole and not a bone to be found anywhere inside remained calm as we pulled into the ER, I hear this quiet and sad "it's all my fault...it's all my fault..."  poor kid.  Yes, I finally got it together then and filled the role of good and reassuring mom who hugged and promised him it wasn't a big deal and that they just needed to get it out.  I just wanted him to know that when something like that happens, he has to tell someone and keep telling someone until it's taken care of.  I know he didn't because he just worried he was going to get in trouble.

Despite the lying, piece of junk sign in front of the hospital that promised only a 6 minute wait, we waited almost an hour before we were in the triage where the nurse on duty was making him laugh about the various ways they would get it out, like blowing an air hose into his bellybutton all the way up and pushing it out his ear from the inside.  Thank God for people like that in moments where frustration has firmly taken root.  And 2 hours later, we had this:

The hard pink shiny thing that came from the floor of the block center at school, next to a penny for good measure.  It's not nearly as big as what I originally saw jammed up in my child's head.  I suppose it never is.  He didn't fuss or complain at all about them getting it out and went home and immediately crashed out, since it was waaaay past his bedtime, and ours.

So, another story in the adventure of the left ear in the Royal household is in the books. 

Lesson of the day, kids:  Don't stick hard pink shiny things in your ear and not tell anyone for 4 days!

It's a good news kind of day

In my attempt recently to do some catch up blogging, I failed to share the good news we got Tuesday about Justus' ear.  We went back to the ENT for his hearing test, the first since his surgery this summer (had to wait for total healing).  You may recall from an earlier blog post that the doctor told us he expected that a normal loss in Justus' left ear would be about 50-60%.  So, we were all anticipating that.  We have not been *as* hard on the boy about not listening to us because we haven't been sure yet about how much loss there is, and therefore, how much he is actually hearing us clearly.  We've had lots of discussions about "Did you hear what I said?"  "Ok , tell me what it was."  to verify that he heard us when giving directions.  Let me just say, that boy is in some serious trouble!  The doc told us that even he is surprised by how well the results came back.  Justus' hearing in his left ear is almost in the completely normal range.  Hallelujah!  He said he almost never gets results that good, and he was just as thrilled.  So, the truth is that he's just been ignoring us.  For now, I will take that happily because that means my baby is doing great!!  Aside from living with a tumor in his ear that will require fairly regular attention, all is well and the result is pretty outstanding.  Everyone's prayers are so appreciated!!

In other great news....we have a walker!!!  Sort of.

We are so thankful for our blessings!

In an ideal world...

   ...our children would never hurt.  Not so much as a bump or a bruise...or, at the very least, we could accept the hurt on their behalf.  But, as we know, that's just not possible.  So we have to look at the less than ideal situations as opportunities to grow, learn, and be better people.  I am preempting Wednesday's Winning Words to provide an update on Justus' surgery on Monday.  I feel bad that I have not updated lately, but we've been a tad busy.

So, Monday was the first day of Pre-K, at least for the rest of the class.  I found this cute idea on Pinterest (and have since noticed, thanks to Facebook, that so did just about everyone I know).  We will take a picture on the first day of class every year with Justus holding a sign of what class he's in.  Now, before you think I'm the WORST mom on the planet for doing this on this day, know that we will take another one on HIS first day of pre-K next week and it will be shared as well.

Before (like the Spidey pj's?):

After:

 Don't you love how they put the arbitrarily placed 2 red smiley faces, you know, so it doesn't seem so bad?!  Before I give you the medical aspect of it all, know that this little guy is up and about already and is none too happy about the fact that I keep telling him to slow down as he tries to race across the house.  He's not interested in pain medicine...except the one time he took off his shirt without thinking about his ear and hurt himself.  What a big kid!

The long and short of it is that after a lengthy surgery (roughly 3 hours), the ENT was unable to get the tumor out.  It had spread further than originally thought, all the way down into his eustachian tube, over his stapes, and is firmly planted on his facial nerve.  To have retrieved as much as possible without doing anything else would both be very dangerous (risking some facial paralysis) and would necessitate further surgeries which would not be good for Justus.  He also said that the tumor, itself, was conducting sound for him, which is why his hearing is still so good.  When he got in there, the bone was basically granules.  He saved what good bone he could to do hearing reconstruction to the extent possible, with some skin grafting.  We will not know for a few months how successful that was.  He cut away most of the rest of the bone to allow the cholesteatoma to grow safely.  Overall, he anticipates about a 50-60% hearing loss on the left side.  I will tell you that, so far, we have not noticed any change in his hearing, which is great!  He said that Justus' ear will look the same, but he will have a bigger hole and he will have to go in for regular "professional cleanings."  We go back Tuesday for his follow-up and then the packing comes out a week or two after that.  Justus is in great spirits and hardly seems bothered, except when he accidentally hurts it or when it drains.  The cup came off yesterday, and we have him only use it now to sleep to prevent him from rolling over onto his ear.  

He is taking full advantage of being waited on hand and foot, but I can't say I blame him.  He's having a hard time staying inactive, and I feel guilty that he will return to school next week with a "no physical activity" note.  His teachers will surely loathe me for awhile.  Especially now, knowing the extensive nature of this growth, we are immeasurably thankful that it was "accidentally" found and treated.  Left alone, he may have suffered a great deal more damage and pain.  We just pray that he continues to recovery so quickly with minimal discomfort, and can avoid the need for further procedures.  

Although he is seemingly fine, I return to my initial reflection when I think about him being alone in surgery for that long, the way he looked when he first came out, and even the surge of pain he obviously felt when he pulled his shirt over his head without thinking.  You just hate for your children to experience any moment of pain.  But, I know they are  experiences that instill pieces of what becomes an individual's character.  

We appreciate everyone's support, thoughts, and prayers.  Each and every one is a blessing.

And stay tuned...there will be a real first day of Pre-K picture.  

Can you ear me now? Redux

Starting to feel like a Verizon commercial....Can you hear me now?

As with most things, there is a good and a not as good.  So, we'll start with the good.  We had a great trip to Houston for Delaney's ABR testing.  We went down Sunday night and had a fabulous dinner with her Aunt Cande who we haven't been able to see since January because of her free-wheeling world traveling.  I mean, she said it was a "study abroad" program, but I've seen the pictures, and there was WAY too many good times for there to have been real studying going on.  Nonetheless, we are thrilled she's back safe and sound and it was great getting a chance to catch up with her.  If I was a smarter person, I would have a precious picture of Delaney and Cande at dinner to insert at this point, but I failed on that one and just don't have time to photoshop one of them together.  

Monday morning, after some intentional sleep deprivation, per doctor's orders, we arrived at Texas Children's for her testing.  The sweet nurse came in to give her the sedative (FAIL) and had to give her more because she spit most of it out, just as we suspected she might.  But, finally, she went to sleep so they could put all the little electrodes on her and hook her up to machines.  She did have to have oxygen because with her congestion, her level dropped a little lower than what we would like.  So, I know it's kind of sad to see her like this, but since we know she's quite well and was just sleeping, it's somehow easier to take.

She slept well for awhile, NOT the 6 hours they told us she would, but long enough to get what they needed.  She does have an inner ear that responds to bond conducted noise. This is the best news we could have hoped for because it means that at the very least, if we wanted to later, we could get her a bone anchored hearing aid (BAHA) to allow her to have hearing on that side.  At best, if we find through later testing that she has an appropriately developed middle ear, they may be able to restore her hearing completely without hearing aids!  They also confirmed that the right ear is in great shape.  So, fantastic day overall, and we go back yearly for follow-ups unless we notice speech development problems, etc.

Justus' appointment went fine, but it was a lot of information and not the best news about his tumor.  Rather than presenting as a pearl-like mass (which would be the more ideal scenario), his tumor is more of a spread out growth, which makes it a bit more difficult to remove.  It is also wrapped around some bone and very near/on a facial nerve.  So, the goal is to get all of it (because whatever isn't retrieved will continue to grow, necessitating another surgery) with only the bone that must be taken, and not damage facial nerve.  If it cannot all be retrieved without getting too close to the facial nerve, the tumor will stay and all the bones in his ear will come out to allow it room to grow without causing more damage.  Since some bone has to be removed, he will suffer some hearing loss on that side.  How much depends on how much bone has to be removed.  But, as we've learned with Delaney, you only have to have one good ear to hear and his speech should not be affected.  Reconstruction or a hearing aid are options later if we so chose.  The surgery is scheduled for August 22nd, so please say a little prayer.  They will go in from behind his ear, which is just fascinating to me, and exciting that he won't have a visible scar really.  It will be several hours but he should be able to go home that day.  I'll keep everyone posted.  Sorry no picture of Justus from his appointment, but it was just a regular doctor visit.  I guess I could have taken a picture of his blue mouth from his blue lollipop they gave him.  :-)

Thank you all for continued prayers!  They are so very appreciated.

Can you ear me now?

It's going to be a big few days for the left ears in our family...well, at least the kids' ears. Let me 'splain....

As some of you may know, Delaney was born with a little ear. Yeah, kinda like Nemo. Technically, it's called an atresic ear with microtia.  You can kind of see it here.

She has no hole or canal, and no hearing in that ear. We've been to a number of doctors for various discussions, and Texas Children's convinced us to go ahead and do an ABR (auditory brainstem response) test to see if she has middle ear/inner ear functionality. If she does, then her hearing will be able to be restored after they rebuild her ear when she is about 6-9 years old. She has fantastic hearing in her right ear, so even if they can't do the restoration, she should still have no problems. Depending on which ENT you ask (and we've asked several), it may be worth considering a bone conducting hearing aid, but we've about decided to wait and see how her speech develops before we consider putting her through that. I digress with the back story. Her ABR is tomorrow morning at Texas Children's Hospital and then we meet with the ENT to go over the results. They will have to sedate her for a few hours. Although it's a mild sedative and we're sure she will do great, we still ask for prayers for a successful day!

Tuesday is Justus' turn. In late June, he had his tonsils and adenoids taken out. In then process, his ENT found a benign tumor in his left ear, which he originally thought was a lot of fluid that just needed draining. We've learned that the cholesteatoma needs to be removed because if not, it could potentially cause permanent hearing loss, facial paralysis, brain damage, etc. We are so fortunate the doctor found this because Justus had not been exhibiting any symptoms. Tuesday is his surgery follow up where he will have a few tests and we will schedule his surgery to remove it.

Not a fun topic today, but important to us and we ask for prayers for an easy few days for the kids and continued prayers for healing for both of them. We will have surgery in the near future for Justus and distant future for Delaney, but we will definitely keep everyone posted about that stuff.

On a much lighter note, someone turned 8 months old yesterday!! Happy month-day to our little princess!

You love...your brother, more than anything

Your favorite food...pretty much any baby food, but you really dig the veggie/meat combos (that's my girl!)

Your least favorite food...avocado.  It's the only one I can't get you to eat.  Admittedly, I've only tried a time or two, but you've never rejected anything else like that.

What you're doing now...not yet crawling, but I can tell you are so ready to be mobile

                                  ....grabbing anything that is unfortunate enough to find itself within arm's reach, and putting it in your mouth; 

                                  ....jabbering away with mamamamama (my favorite, of course) and babababa

                                  ....Smiling all the time!