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!

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