Tuesday, December 31, 2013

goodbye 2013

We squeezed in our very last specialist appointment on Dec 31st.  That makes for a grand total of 8 surgeries/medical procedures and too many doctor visits to count.  Hit our max out of pocket months ago so our insurance company must hate us.  I often felt like running the kids to appointments consumed the hours equivalent to a part time job each week.  Good thing my other job is a part time job.  I've probably said it before, but I have a new found appreciation for families with kids who have serious and chronic medical conditions. What we are doing is just a walk in the park compared to that.  Ethan's last procedure of the year was a nasal endoscopy to check the functioning of his palate.  The doc wanted to wait on this one, but too bad for Ethan that he has a speech therapist mom.  I didn't want to wait 6 months to find out that he didn't even know what a functioning palate felt like.  And I knew the chances of getting any decent data was 50/50 so we might as well try it while it was still "free."  It was nice talking shop with the lovely SLP who performed the scope.  Ethan had to sit perfectly still while a tube the size of a spaghetti noodle was threaded up his nose and down the back of his throat.  And not cry. And say "buy baby a bib" about a million times.  It went as horribly as you'd expect but we did get the pictures we needed and he is getting "fair" closure of his palate.  Not great, but ok.  Which means no palate revision in the spring...yay!  In fact, God willing, there are no surgeries on tap at all for 2014.  Possibly not even any specialists visits.  Now that would be something!

Monday, December 30, 2013

funnies

The girls were playing hide and seek and NiNi was doing the seeking.  She came to the living room where I was sitting and asked if I knew where Meagan was hiding.  Refusing to divulge any information I said, "I plead the 5th!"  She said, "Darn it!  I don't even have five dollars!"

Chris' company party this year was cocktail attire.  I don't even own a regular dress (I am not kidding) let alone a cocktail dress, nor a single pair of heels.  So I grudgingly bought some jewelry and an acceptable outfit.  When I put it all on NiNi said, "Wow mom, you look like a rich lady!"

With all the stuff Ethan's had done, he has become very comfortable using proper names for all of his body parts.  I took him to Subway for lunch after his urology appointment.  As we were eating I saw an older lady eyeing him and smiling.  When she got up to leave she stopped by our table and tried to engage him in a little small talk....what's on your shirt, what are you eating, etc.  Next thing I know he tells her, "My penis feels better!"  I think she was hard of hearing because she replied, "Oh that's nice sweetie"

I had to give NiNi a "time-in" the other day.  By now she knows all the "therapy lingo" we try to use on her when she's having a meltdown.  As I was holding her and talking to her (quite against her will)  she yelled, "This is NOT highly recommended!"

Whenever I won't buy NiNi something or take her some place that costs money she says, "Aw mom you're so cheap on me"

It is adorable the way that Ethan still mixes up his words.  For example, he loves to yell at his sisters, "You not better say dat!"

Wednesday, December 25, 2013

Holiday stuff






Children's museum


Ninja fighting in his new TMNT pj's


How many kids can you fit in YOUR kitchen cabinet?  This is Ethan's "van."  He goes in there with his keys and then comes back out pretending that he went somewhere




That's a cookie under there



Didn't really have "holiday" sprinkles but had lots of these black and gray "robot" sprinkles leftover. 

 
Ok we staged this, but couldn't resist when I saw Chris had the book laying around.  Who reads this in December???  Definitely a January book

Rudolph Ethan on last day of preschool before winter break
 
Could not tear him away from the music room at the museum.  The kids got talent what can I say!







Ethan busting up the girls sleepover party (but then suddenly became very tired)

 

Meagan's new "teenager" room

 

Wednesday, December 18, 2013

Wednesday, December 4, 2013

Thanksgiving

 
This Thankgiving was at our house.  We thought that would be best considering Chris had his, ahem, "procedure" the day before and was still laying on the couch with bag of frozen peas strategically placed.  After dinner my sister and her girls slept over so that we could eat pie and watch Christmas movies into the wee hours.  
 
 

Chris photo-bombing the girls picture



Tuesday, December 3, 2013

Saturday, November 30, 2013

family day sundae's

Today is the 3rd anniversary of Ethan's adoption day.  We thought it would be cool to do a family devotional on how we all fit together as a family (complete with sweet edible props).  First on the agenda was to watch each of the kids' birth/adoption videos.  I was very curious how NiNi would handle hers because she has never made it through the whole thing before without becoming anxious and upset.  We hadn't tried in a couple of years so I decided to risk it.  Glad I did because she not only made it through, but was able to actually enjoy bits of the video...giggled as she watched herself suck on her fingers and throw the teddy bear I gave her.  I was a little concerned that she would feel her video was less "dramatic" or "special" because it did not involve a hospital, labor, etc., but I did not sense that from her at all.  In each of the kids' clips, Chris and I were crying tears of joy, examining fingers and toes, commenting on personalities, and had the exhausted new parent look about us.  All very authentic examples of the fact that somehow birth and adoption are both valid ways of entering a family. The funny thing is, Meagan has always felt a bit jealous that she is not adopted from an "exotic country" and that being white is boring.  Of course that is a whole other ball of wax for a different devotional.  So we read some "family" scriptures and built brownie sundaes. The kids talked about which part of the sundae each person might be...Dad was the ice cream (the strong base), Ethan the sprinkles (life of the party), mom the brownie (adds the special touches to the family),  NiNi was the hot fudge (because she has beautiful fudgy hair) and Meagan was the kind-heartedness whipped topping.  Ethan was much more interested in the dessert than his adoption day video, but I look forward to the conversations we will have as he grows older.  I know that the way we've chosen to build our family is challenging at times but oh so worth it...and moments like these are great reminders of that.

Thursday, November 7, 2013

Look Ma no nasal retainer!

Here I go again with my backwards blog post catch up!  First off, Ethan got his nasal retainer removed.  Here he is enjoying his happy meal and able to itch and pick his nose freely.  And of course breathe through his nose!  He was sporting a snore that rocked the house every night.  Not sure how he got any sleep at all the past 10 weeks. 
 

 
The unintended side effect of removing the scar tissue from the inside of his nostril, which I was sort of prepared for but not really, is that his speech is very hypernasal now. Of course his palate is functioning (not-functioning) the same as before, his plugged up nose just masked it for awhile. Seems to be the way it goes with him...fix one thing which makes another thing worse. He is getting T-tubes (more permanent ear tubes) placed next week. His 4th surgery in 9 months. I was hoping it would be his last for awhile, but it looks like we will be going back for a palate revision in the spring. We see a dietitian next week as well. He has been hanging out at 27 pounds for almost a year. I am skeptical that he/she will provide any new or life-changing recommendations beyond what we are already doing, but trying to be "compliant" and attend all my scheduled appointments.  He is looking like such a big boy now.  Here he is doing his "chores" putting the silverware away. 
He is giving me his "REALLY mom???" look
 

Thursday, October 31, 2013

Halloween 2013











Meagan with Claire and Sydney...they are a bunch of grapes and a grape farmer

NiNi's effort to protect her candy.  It says "Do Not Eat or this will  happen" then beside it is a picture of someone apparently injured in some way saying "help! help!"  Wow, deperate times call for desperate measures.


An attempt at looking scary...I think



Ethan wanted to be a Teenage Mutant Ninja Turtle...but I scored this regular ninja costume at Goodwill for 4 bucks and told him it was Raphael.  He totally bought it.


Sunday, October 27, 2013

Fall Break

Some friends of our let us use their lake house and boat over fall break.  Unfortunately, it was the coldest weekend of the season so we stayed inside most of the time.  The kids had a blast watching movies and playing board games.  NiNi had been begging Chris to take her fishing for about a year.   Not sure what her obsession with it was.  So they were able to do a little cane pole fishing with hot dog bait.  After about 20 minutes of sitting out there, not a fish in sight, she said all disillusioned, "THIS is fishing?  It's boring.  " So that cured her fishing bug.