Sunday, April 27, 2014

Updates on Maggie Fei & Our Crew

Blogging has been put on the back burner as these last couple weeks have been SO busy.  We've had a ton of appointments (and more to come).  But we have lots of good news to report.

Easter Sunday marked ONE MONTH since her big surgery! Look at her!

Monday we saw her surgeon for a follow up visit. I went in armed with tons of questions and came out giddy with excitement.  He is thrilled with how she looks.  Said she is healing really well and lifted the last of her restrictions.  She's now allowed to eat anything she wants, including sharp and crunchy things.  Hallelujah! She can also use a spoon and a fork (not that she can really do this by herself, but still, we were so tired of feeding her with our fingers!).  She was also given the okay to start working on using a sippy and straw cup. We've been feeding her liquids either with a syringe or open cup for a month and that's a tiresome job.  She has a couple different soft spout sippy cups we're working on with her. She hasn't figure out how to suck yet, but she's very excited about the cups.  Hopefully she'll figure them out soon!  He said she can try to use a straw too, but said she won't be able to successfully suck from a straw until her palate hardens more, which will take several months.

While her palate is still fairly soft, he said he would be shocked if anything would happen to it at this point such as something poking a hole in it. We've been SO careful that she not put any food or toy in there that could poke a hole, so it feels amazing to let our guard down a bit.

Her lip is still swollen a bit on one side, but he expects that to continue to go down over time. We have to be very careful to use sunscreen on her scars anytime she's outside, as they can get ugly red if they get exposed to the sun.  So we're in sunscreen/hat/stroller shade mode big time for the warm weather.

The only bummer is the nose stent. He said we should use it "as long as we can handle it".  He said in other countries they recommend using it for 9 months! He originally told us several months, so we're aiming for using it until at least the end of the school year.  We also need to work on increasing to the next size, which seems SO much bigger. We've used it some, but the bigger size really hurts her and causes her nose to get very sore, so we just use it for a while and then go back down to the smaller size. Hopefully we'll be able make the complete transition to the bigger size soon.  The purpose of the nose stent is two-fold. First, it's to help hold in place the work he did throughout her nose and palate.  When we leave it out for a day, her nostrils start to collapse in, as they're not strong enough to hold their shape on their own.  So we can see a visible reminder that she really does need the stinking thing right now.  Secondly, it's to help stretch out the skin on her nose, as she has very little skin there. He said the more we're able to use it now, the less revisions he'll have to do to her nose later.

Looking ahead, he doesn't have to see her again for 6 months! Whoo-hooo!!  Long term, he's hoping she won't need another surgery again until she's 6 or 7!!!! Unbelievable.  That will be a big surgery. She'll have to wear a palate expander for a while before that surgery, then he'll connect her palate to the gums behind her front teeth.  Although he closed her palate successfully during surgery, it's typical to leave an opening behind her front teeth and not close that until later. I'm not sure why.  But due to that, she still does have some liquid sneak out her nose occasionally, although nothing like before.  Also during that next surgery, she'll have to have a bone graft. She is missing part of her gumline (and hence no teeth in those areas), so typically what is done is bone is moved from the hip to her mouth to create a complete gumline and provide a place for future dental implants.  I've heard the recovery for that procedure is very tough, particularly from having the bone removed from the hip. He'll also revise anything needed to her nose and lip, and probably do some dental work as well, as her teeth are not all really where they should be. So that will be a doozey of a surgery, but thankfully we'll have years before we have to worry about it as long as nothing comes up in the meantime.

Next week she gets to see the dentist, as regular cleanings for a cleft kid are crucial. They are more prone to cavities and decay and avoiding having any teeth pulled is very important. I'm sure she'll just love that (insert sarcasm). Thankfully, our pediatric dentist for all our kids happens to be "the man" at Children's Hospital who teams up with the plastic surgeon for cleft kiddos, so she's in great hands.

We also have to head back to the hospital for a follow up with the ENT to make sure her tubes look okay. If they do, then they're going to try to retest her hearing. We tried to do that before her surgery, and she wasn't able to complete it. We can tell her hearing is much better now that the tubes are helping to keep her ears cleaned out. I'm anxious to find out just how much she does hear.  Hearing loss is common with cleft kids since their anatomy is different and they tend to retain a lot of fluid, and it was obvious she didn't hear great before.  Hopefully that is resolved with the ear tubes.

She also has to go have her vision checked, one final piece to getting her fully evaluated.  That will be another fun appointment, I'm sure (more sarcasm).

She continues to get services from the county a couple times a month to help develop her speech and language skills. Probably by age 3, she'll be needing official speech therapy, but for now we're just trying to build her language foundation and get her communicating.  She is starting to use sign language a lot more, she has probably 10-12 signs she's using which has helped SO SO SO much in her being able to communicate to use what she wants instead of just crying.  She can sign more, eat, please, thank you, milk, mommy, daddy, all done, etc. and will point to what she wants, which she couldn't do before. These all sound like simple things for an 18 month old, but these are foundational language skills she's lacking  due to both her cleft as well as being in an orphanage and not having an opportunity to communicate.  Our goal right now is to lay a solid language foundation for her. We're starting to take her to storytime at the library, which she LOVES, especially the songs. Anything with music, this girl is all about it.  She loves songs and fingerplays and stories.  She starts to sing and dance the second she hears it. I love it.

Her sleep issues are up and down. If we can get on a good schedule for a few days in a row, then she sleeps pretty well. If we get off our schedule, she starts to fight sleep and wake up after really short naps. So we're trying to be really diligent with her schedule right now, for her benefit as well as my sanity!

Things are so much easier now that she can feed herself normal food again. Goodbye arm bands and goodbye syringes!!  Getting her to drink continues to be a battle.  She still only wants juice or smoothies instead of milk. She had her 18 month checkup this week (yes, we have appointments ALL the time).  Our peds said that although she is tiny, she is growing, so she wants us to cut out all juice and smoothies and only offer milk or water at this point.  She said she won't dehydrate herself and eventually she'll catch on. In fact, right after that appointment she started to drink more milk, so hopefully we're on the right track. (She also doesn't want her on Pediasure as she doesn't want her to drink her calories.  She's growing well enough that we don't need to go that route at this point.)

Here's her current stats:
Weight:  19.4 pounds (12th percentile)
Height:  29.25 inches (less than 2nd percentile)
Head:  17.25 inches (25th percentile)

So she's VERY short and a little chubby since her height is smaller proportionally than her weight. We'll continue to watch her over the next few years, but it's looking like she's just going to be a teeny tiny little lady.  She's healthy and unbelievably adorable.  She doesn't have to go back to the pediatrician until her 2 year checkup in the fall!!!  Yahoo!!

In other news, the boys both had their annual checkups as well. Allie is safe from any doctor's visits at this point (knock on wood!) but we have begun counseling with her at the adoption clinic. She has been struggling with a lot of things for a long time and it's time we get her some help. We're hesitant to share too much about this in an effort to protect her privacy, but she is dealing with a lot of emotional and behavioral issues that we believe are adoption-related that are significantly impacting our daily life. Thankfully we have an amazing resource just for kiddos in her situation close-by, and we're taking full advantage of what they have to offer to help her.  It's been very reassuring to hear that she is not alone in this and that there are things we can do to help.  We would appreciate prayers and support for our bigger girl.

I'm also trying to volunteer in each of their classrooms a couple of times before the school year is over. I love to be a regular presence in their rooms, but this year that was just not feasible for the most part with everything going on with Maggie.  But I'm trying to make it happen a few times before summer is here. They all love it when I show up at school; I know they won't always feel that way so I'm trying to make it happen for now.  Plus I love being there; it blows my mind to realize I've been home for over 8 years now; I only taught for 6 years.  But I did manage to recently take 2 classes to renew my teaching certificate, so I'm still a certified teacher!!!  I'm not even tutoring right now, but it feels good to know I have that option if need be.

Maggie has been home 5 months. She is a different person now than she was before in so many amazing ways. However, since we kept her so close in an effort to promote bonding and then in caring for her after surgery, she is still very clingy to us and very fearful around other people. She has yet to let most other people hold her, she hasn't gone into the nursery at church yet, no babysitters, etc.  She's my permanent appendage! Which a great thing that she's bonded so well to us, but I'm looking forward to slowly helping her get a little braver and gain a little more independence over these next few months.

Despite that, as of right now she's seems to be the most laid-back of all our kids. She's very silly and seems to feel very free when we're at home in her comfort zone.  She is happy-go-lucky most of the time. If she's fussy, I know something is wrong. She tends to not be fussy just for the sake of being fussy (unlike some of my other children who shall remain nameless).

I'm so thankful those initial weeks after the surgery are over. Those were some hard times.  It's definitely easier now, but life is still full-on crazy here.  Having four kids this young is "stupid hard" as Jeremy says.  It's our new normal and the chaos rarely lets up.  Having a child with special needs and another who is struggling emotionally, plus 2 very active boys is draining.  It's hard and is going to be for a while.  Sometimes I am changing her diaper and wonder how on earth I am still changing diapers...

But to see this gorgeous face, we know it's all worth it!


Yea for spring! Our first meal outside this year.

We recently had a dear friend go to Korea and bring back some amazing keepsakes for Allie.  This is so special to her and to us, since we didn't have the opportunity to go there ourselves.  
We're so thankful!

 Why is this so cute??

Allie teaches Maggie all about the Easter Bunny.

This is what I call a "reality shot". Look at Sam's face!

Getting some reading done before game time...

and playtime for the girls.

Cousin Vaida came to meet Maggie for the first time! 
They are only a few weeks apart in age. They were so cute together!

Sunday, April 13, 2014


Little Miss Maggie Fei has decided to start asserting her independence and is really fighting naptime and sleeptime.  Oddly, she goes right to sleep at naptime, but can't stay asleep. Nighttime it takes 2+ hours of screaming to get her to sleep, but then she generally sleeps all night (knock on wood!!!). The second her feet hit the floor, she is happy, so we're thinking this is a fun "I'm 18 months old and can do what I want" phase.

Despite all that, we've had some reasons to celebrate lately.

Thursday we celebrated 3 weeks since her surgery! She continues to look amazing and is not pulling out her nose stent nearly as much.  

Friday we celebrated being her Forever Family for 5 months. It's been FIVE months since we met this tiny bundle of joy!  In all honesty, it seems like it's been much longer than that.  
What did we do before her?

She finally has her first word!  She consistently says "ya-ya" for bye-bye when she's waving bye to someone.  Super cute.  

We're also making some headway with drinking straight whole milk without juice added. 
Another reason to celebrate!

This girl struts her stuff all over our house. She is super silly and truly hilarious.  
It's a good thing, cuz this not sleeping thing is getting old!

The Diva.

Thursday, April 10, 2014

Celebrating Ben

Eight years ago today, this boy made me a mom.  He changed everything! He is the brightest shining light!!  I'm so lucky to say that he's a Momma's Boy, I can't get enough of him.  I know this won't last forever, but he still kisses me goodbye, holds my hand and lets me pick him up (although it's quite a struggle now!). He has blossomed from a boy who was literally MUTE at school in Kindergarten to an outgoing kid who never stops talking.  He's a reader, a mathematician, a thinker. He has a mechanical mind like his daddy (and looks just like him!), but in personality is very similar to me; first born, Type A.  He has watched our family grow and grow and GROW and is such a buddy to his brother and has a huge heart for his sisters.

He's my bud, my love, my HEART.  Happy Birthday Ben!

One year old!


His love of guitar started at 4...

Meeting Allie.

5 years old with his precious blanket.

 6 years


The big 8!!!

Not too old to choose to spend his birthday lunch with his mommy...

at McDonalds. :)

With his favorite person, Cousin Ethan.

Now he plays the guitar for real!

He got to choose how to spend his evening; 
he didn't want to be anywhere else besides his Cousin Ethan's ball game!

A perfect ending to a perfect day!

Tuesday, April 8, 2014

18 Months!

I'm a day late, but we have an 18 month old in the house, weighing in at a whopping 18 pounds!!

Saturday, April 5, 2014

2 Weeks Post-Op: Progress Made, More to Go

In many ways, the 2nd week post-op was much easier than the first. She caught on to her temporary, new way of eating.  We got in a good routine with taking care of her, putting in the nose stent every time it fell out (over and over and over....), strapping on the arm bands, etc.  Every day we got her out of bed, we could see an improvement in her face.  The swelling has gone way down and the redness from her surgery sight above her lip is barely there, which is remarkable.  The big kids all went back to school after spring break.  All great news. 

Along the way, though, Maggie started to have trouble sleeping. It snuck up on us; at first we just had trouble getting her to go to sleep; then she was also getting up really early. Then naps were fought. Then we had a night where she was awake from 10pm-4am.  She had no symptoms whatsoever, seemed to be in no pain, and was perfectly happy out of her bed.  I spoke to the nurse at our pediatrician's office and she suspected possibly a problem with her tubes, maybe they were clogged causing ear pressure.  I was hoping there was a clear reason for the unusual sleeplessness. Usually our girl is a champion sleeper!  But a trip to the peds left the cause of the sleep issues a mystery- no tube problems or anything else discovered. We tried leaving the nose stent out and it didn't make a difference.  Finally, at 13 days post-op, we tried leaving the arm bands off.   

Bingo.  She slept.

We were close enough to the 2 weeks they had advised for the arm bands that we just quit them cold turkey.  We were so relieved to have her sleeping again!!

But then she had a follow-up visit with a nurse practitioner at the surgeon's office.  Although she thinks she is healing beautifully, we were also reminded that her palate is like "paper mache" and will be very fragile for quite a while still.  Her advice was to keep up with the arm bands for another week or two.  Ugh. She didn't say we had to, but she did say that it would be very easy for Mags to poke a hole in the roof of her mouth with her finger.

So we're kind of flip-flopping back and forth. Sometimes we put them on, but she often gets out of them and then can't sleep and then we're all miserable.  So we're taking it one day at a time and doing the best we can.  

The nurse practitioner also gave her a bigger nose stent yet again; they have to keep increasing the size to keep stretching the skin in her nose, trying to create more skin where it is lacking.  We are finding that the surgeon and his staff are gifted at doing the surgical repairs and being knowledgeable about what kind of care Maggie needs for the best results. However, let's just say they're not so well versed in the REALITY of keeping this piece of slippery plastic stuck in her nose 24 hours a day. Or keeping a magician toddler sleeping in the arm bands all the time.  We've been frustrated at the lack of practical tips and help, and every person we talk to there has a different opinion.  I guess it's just a tricky situation and we've resolved to just do the best we can and pray she's going to be okay.

The dreaded nose stent. The thing is LONG and goes way up into her nose.
 It's got to be miserable. You can see her crying down below, she knows what's coming!

Oddly, even though the nurse practitioner wants her in arm bands still, she also said she now has no diet restrictions. Seems weird to me that they are okay with her eating crackers, pretzels, hard carrots, and the like, and yet want the arm bands on to prevent her fingers in her mouth.  Anyway, we're choosing to continue with her soft foods diet for a while longer. We have an appointment with the surgeon himself in a few weeks; we're going to try to be as cautious as we can until then.  The good news is that she said the lip heals much quicker than the palate, so we can relax a bit about her busting her face and splitting it back open.

We're also back with the Help Me Grow program coming out and working with us on speech and language.  She still only makes a couple consonant and vowel sounds and has no words. So we're working to build her signing skills and exposing her to as much verbal and musical experiences as we can. Easy to do since the kids LOVES music.  She can be found bopping along to any music, any time!

As expected, she has lost probably almost a pound from the surgery.  She's back down to 18.4 lbs.  Such a bummer after working so hard to pack on the pounds!  But the peds said she is doing well and not to worry. Before the surgery she was still on a bottle with formula 4 times a day, in order to promote weight gain as well as bonding.  We had to quit bottles cold turkey for the surgery, so we're trying to move forward with open cups and whole milk instead.  She is not happy about the cup AT ALL. As good as she was drinking in the hospital after surgery, she is now refusing most drinks.  She is happy to drink juice and smoothies, anything sugary, but her doc said it's time to back off of those things and get back onto a healthier diet.  Maggie does not agree with that at all, and for right now is vehemently fighting off milk and water from a cup or a syringe.  Such a stinker!  Thankfully she's getting enough fluids through the baby food packets and other watery foods that we're okay to stand our ground and hope it gets easier soon.  We're very hopeful that at some point she'll be able to learn to use a regular sippy cup on her own rather than need help with an open cup.

So we've made it to 2 weeks post-op, which was a huge, huge victory!!!  Such a weight off our shoulders that the most critical days of her care are behind us.  Overall she has handled things better than we anticipated, and is healing at an amazing speed!  But we have at least a couple more  weeks to go of being very cautious with her palate, limiting her diet and using the arm bands when we can.  And they are also hoping for a good 6-8 weeks total for the nose stent in 24 hours a day.  So we have a ways to go, but we also continuously remind ourselves that while her needs are pretty intense right now, she is so much luckier than so many other kids with long-term and life-long needs.

Lovely arm bands.

A break from caring for our tiny tot to take our "big ones" to 
see the Lego movie and enjoy spring break a bit.

 Looking pretty 9 days after surgery.

Hanging with Uncle Matt.

Park outing.  I'm sure people think she has a broken nose and broken arms. 
Oh the looks we get!

Crazy hair!

My stair steps, before the boys' birthdays.  Last time for them to be 1-3-5-7 years old.  

Loves her Grandpa Tim.

First taste of ice cream for Sam's birthday. 

11 days post-op.  I never DREAMED she would look this good this fast!

Reality.  Sometimes she just needs to be held and house work still calls.

Close-up of her lip repair 2 weeks post-op.  Hard to imagine that 2 weeks prior she was cut completely open; the surgeon detached the skin from under her nostrils, all the way down to the lip and literally opened her up completely.  You can see, though, how her nostrils, especially her right one, collapses down when the nose stent isn't in.

 You can see her teeth; they are by no means perfect and we have years of dental work and more surgeries ahead of us, but we are still rejoicing the fact that she has her top left tooth!!  You can also see that her palate is now closed! Our pediatrician was just astounded at how good it looked. She said it looked like any normal palate, except for the stitches poking out.  What a difference from the huge canyon that was in there 2 weeks ago.

The drool continues... 

Being non-verbal doesn't stop this girl from communicating!

Back at the hospital 15 days post-op for her follow-up visit.  She's such a trooper!