Tea Cup

We took a mini getaway to Williamsburg to take L to Busch Gardens.  We've realized over the past year or so that she is a complete thrill seeker.  She loved the rides at our county fair, even riding them by herself.

She loved, loved, loved this trip.  Proof is in the video.  Enjoy!

A little treat for your Friday

People with no kids don't know.

A little snippet

I was going back through videos and can hardly remember Luca looking like this.  Oh, and this video will so embarrass her as soon as she is old enough to be embarrassed by her parents.  She used to smile a lot whenever we said "Luca, did you go poo-poo in your pants?"  And apparently I thought it was appropriate to demonstrate this on camera.  Mother of the year award, right here.

She was 8 weeks old and listed for a transplant.

Speech

As most of you know, Luca receives speech therapy.  She uses her voice to express likes and dislikes, to alert us, etc., but does not truly have words yet (except Mama - it is the only word she uses regularly and appropriately).  She does imitate sounds and will imitate the way our mouths move when we say a word. 

She has a lot of frustration from not being able to express her needs and wants.  So I started using signs with her and she started picking it up pretty quickly.  I took a video about 1.5 months ago of her showing the signs she knew at that point.  Since then, I keep a record of all of her signs so we know how many she knows, and so we can explain to anyone else what she might be telling us.  As of right now, she probably knows and uses about 40-50 signs.  She is picking up signs more quickly than Ian and I can learn them!

I cannot wait to hear her use words.  People keep saying that I will want an "off" switch when she does start talking.  Well, right now, I am so longing to hear her talk that I disagree with wanting an "off" switch.  It will come.  Her therapists keep reminding me how far she has come.  She is making improvements and showing the desire to communicate.  They also remind me that often g-tube kids have weaker core muscles, which are needed for breath control for speech.  Soon, we will be adding physical therapy into her routine to try to work on breath control.  And in the meantime, I will continue to work on sign language to expand her knowledge there, while dreaming of the day she decides to talk to us.  Everybody keeps joking that when she does talk, she will come out with full sentences.  I will not be disappointed with that!

Her signing video (that she likes to watch and has memorized).

Not a wordless Wednesday

Lots of random tidbits today.

• Here's a video of Luca walking.  She started walking unassisted a couple weeks ago but it was never for very far, and I was always too closeby her (in case she fell) to take a video of it.  Now that she is walking with a bit more confidence, and I, too, have more confidence in her walking, I finally captured it. 

• I made Saltine Toffee Cookies and was planning on packaging them up in small containers for some various people.  But, seeing as I ate a lot of it, it looks like I will have to make another batch, and then quickly package it up before I eat anymore.
• Ian and I dress Luca in comfortable outfits.  And often, they are some crazy outfits.  I often wonder what people think when they see her out in public.  Half the time she looks like a hot mess.  But she is comfy and happy, and I cannot keep up with the amount of laundry she goes through so it normally means that the matching pants or onesie or sweater is dirty.  Oh well!
• We sent about 80 Christmas cards this year.  Obviously, we included some people who we are not that close with, mostly because some of these people have been amazingly generous with thoughts or prayers or tokens for Luca or us over the past year.  I sent them a Christmas card with a little note saying thanks.  I was not expecting anything in return.  But we have received probably 20 Christmas cards back from these various people since they received our card.  It was very clear after receiving about 10, that people had already sent out their cards and received ours and felt bad that they had not sent one to us, so they quickly sent one out to us.  It is absolutely sweet of them, but now I feel bad that they felt bad that we had not gotten a card from them.  The circle of guilt continues I guess.
• A close family friend passed away this morning.  It was certainly expected, but watching his family in pain is so devastating.  And it always amazes me how many people die around Christmas time.  I kind of like to think that people let go around this time because of the spirit and peace that this holiday brings.
• We have no scheduled admissions coming up because finally, Luca is free of all drains in her bile ducts.  As long as her labs stay stable, and she shows no symptoms of biliary issues, they will remove her PICC line in the next month and we will return to the hospital for labs and checkups only.  To get to this place has taken a lot of hardwork, heartache, tears, prayers.  And holy moly, I am so looking forward to giving my girl a bath when that PICC comes out!  Thanking God for the progress.
• I thought we had all of our Christmas shopping finished until we wrapped everything last night and I realized we need a few more things for people.  I plan on finishing up today or tomorrow...nothing like some last minute shopping.

Luca and her gtube bag

Since Luca has been mobile, it makes feeding times a bit hectic for us because we have to follow her closely with her feeding bag.  I knew at some point she would have to transition to wearing the backpack herself.  Recently, I have been putting it on her for a few minutes per day just to get her used to it.  I want her to be fully adjusted and comfortable wearing it by the time she is running. 

But, the size of the backpack that our medical home care company gave us is just a bit too big.  This is a mini backpack, but I am going to inquire about them getting us a super-mini.  If our insurance won't pay for the smaller one, I think we will just have to bite the bullet and get it ourselves, even though it will be over $80!

This video makes me both laugh and cry at the same time.  Sad that she has to get used to wearing something, grateful that we have a way to give her the nutrition she needs.  And yet, my heart melts and I laugh at just how adorable she looks wearing it - like she is heading off to school or something.

Crawling

She has been going backwards for weeks.  She has been rocking back and forth on hands and kneews for weeks.  And I captured this yesterday.

Sure, she is 13 months old and people start announcing proudly that their child started crawling at 6, 7 , 8 months.  But our girl has spent about 7 months in a hospital bed.  Her therapists are ecstatic with how quickly she has progressed at home.   She went from hating tummy time, to tolerating it, pushing up on her hands, pushing up on knees and hands, to crawling in about 10 weeks.  Amazing!!

And other tricks she currently loves - giving open, slobbery kisses.  Totally in love over here.

Almost Wordless Wednesday

(Totally going to be a little dancer like her mama)

(Video taken yesterday 6/14 - 6 months since her transplant! And I couldn't get the video to focus, but it's the sound that matters more than the video itself.)

Music to my ears

I love this video.  Her giggling is music to my ears.  Please ignore how annoying I am in this but apparently when you birth a child, dignity goes out the window and you will do anything, make ridiculous voices and noises, just for that beautiful sound to leave your child's mouth. (Does anyone else hate hearing their own voice as much as I hate hearing mine?)

High Five

A video of Luca from a couple weeks ago...her newest trick.

7 Months

I wrote this post yesterday morning...but didn't get to finishing it up until now. 

Luca is 7 months old today!  How are we spending our day celebrating?  Oh we're back in the hospital.  Sigh.  She was in the hospital at 4 months, 5 months, 6 months.  I was hoping we'd be home on the day of her 7 month birthday.  But then I checked on her at midnight on Friday night and she felt hot.  After a thermometer check, she was indeed running a fever.  A fever for an immunosuppressed baby = not good.  A fever for a baby who has a PICC line in her arm = not good.  So off to the hospital we went at 2am.  She was admitted.  Luckily, her fever came down on its own by the time we'd gotten to the hospital.  And it has stayed down since then.

I really had hopes.  High hopes.  Better luck for 8 months, maybe? 

At 7 months old:

She loves sleeping on her left side.  We're so incredibly impressed that even though she's had massive stomach surgery (x3), she is only a little bit behind in milestones.  She mastered the art of rolling from back to front, but stops short of being on her belly because she hates it. 

She loves sticking out her tongue.  Like, 90% of the time she is awake, she is sticking her tongue out, blowing bubbles, and smiling all at once.  She must be figuring out how to use the thing.  And when we are close to her face and stick out our tongues, she immediately tries to grab them.  (Don't worry, we don't let her.)

She is becoming increasingly quick at reaching for things in her vicinity, even if we just bring something near her for a second.  Especially things that she should not be grabbing.  Like her g-tube extension, my hair, syringes, dog hair.  She even has mastered the art of taking off the arm restraint that goes on when she's hooked up to IVs.

She giggles regularly.  It used to be a once in awhile occurrence.  But the past couple weeks she has increasingly been finding that sweet, belly laugh.  And she still has a big gummy smile - as many times as we've thought she must be teething, we have yet to see the evidence.  Here is a sample of her giggling from about 10 days ago.

In terms of eating - her entire body convulses with every bite of food we try to feed her.  She surely developed an aversion to anything being in her mouth - from being ventilated, having her mouth brushed out with medicine twice per day, and being suctioned a lot in the hospital.  But we continue to torture her try with her.  Almost everyday we try some solids.  The whole bottle thing - she has totally refused.  So oral therapy said to skip it and move onto something she does not have any bad association with.  Hopefully, one day it will just click.  Although she is not interested in eating much, she loves watching Ian and I eat or drink.  She stares intently and licks her lips.

And most of all, Luca is happy.  She is incredibly happy.  It makes me smile in awe to think that through it all, she is one happy baby.  We hear over and over again at the hospital that she is such a pleasant little girl.  She really only cries if someone is not with her, or if she is ready to fall asleep. 

And mama and daddy have survived 7 months - and are even more madly in love with our little girl each day.