Monday, May 21, 2012

Children's Hospital

Once again, we had another rough night last night.  I won't go into the details, but we ended up finally getting to sleep sometime after 3:30, then had to get up at 6:30 to leave for Seattle.  TongJie was not happy in his car seat and cried pretty much from Blewett Pass to Children's Hospital.  Good thing we had our ear plugs!

Once at Children's Hospital, we had appointments with four different people, but we had to wait for awhile first.  Children's is a pretty neat place.  In our waiting room, we talked to a couple who had a newborn with cleft lip and palate.  They liked TongJie and were interested to hear about his lip repair, but we don't know a lot about the actual surgery since it happened in China.  We also saw a 9 year old girl who had recently had a hip graft surgery to close the gap in her palate.  TongJie will also have that surgery when he gets older.  There was a man walking around playing a ukulele and singing children's songs for the kids who were waiting, and TongJie was interested in that.  When it was finally our turn, the nurse weighed and measured TongJie.  We had to take his diaper off when they weighed him - it's a good thing I had just changed his diaper right before or he would have weighed a lot more!  He's about 20 pounds, which is consistent with when he got weighed at his medical exam in China.

We met with a pediatrician who specialized in cleft lip and palate and then the craniofacial surgeon who will be the one performing TongJie's surgery.  They want to give him time for adjustment, but also they want to track his measurements for awhile because of his small size and they want to make sure he's growing like he should and there's not an underlying issue that needs to be corrected or managed first.  So it sounds like, if he grows proportionately over the summer, his palate surgery will probably happen in the fall.  After the surgeon, we met with a social worker who talked to us about insurance, early intervention programs, speech therapy, and stuff like that.  Finally, we met with a craniofacial nurse who told us about lots more details about the palate surgery and what to expect.  We'll have to go back to Children's at least once more before the surgery because TongJie still needs to have a hearing assessment, and the doctors want to track his growth over the summer.  He fell asleep during the last two appointments, so it was nice that we were able to stay in the same room the whole time and not have to move from place to place.  The specialists all came in to the same room to meet with us there.  Upon waking up, TongJie was rather grumpy because of the rude awakening and it was raining outside.  We were really hungry, so we checked into our hotel and then walked to a McDonald's for a late lunch.  Now we're back in our hotel room and TongJie is still pretty grumpy and we're all tired.  We'll see what happens this evening and tonight. We meet with Dr. Davies at 1:30 tomorrow, so at least we'll be able to sleep in if we end up staying up 'til 4:00 am again.

 Here's a photo of TongJie sleeping during his long morning/afternoon


  1. Thanks for posting! Poor little guy... I hope that you guys are able to get some sleep tonight!!

  2. I just saw that you posted this on fb. Totally did not know anything about your child - congrats you two! We had to take Evangeline to Children's once, and it was a great experience for us too. Your little one is adorable.

  3. Our hearts go out to you guys. Its hard to be that tired for that long! Praying for you all. Carol & Mal

  4. Hey...Maybe TongJie would want to see "Mr. Moon"-?

  5. I'm so sorry about the lack of or discombobulation of sleep for all of you... you poor darlings. You two both still look wonderful with radiant loving faces even though you must be sooo tired and TongJie really does have just the sweetest face.. such a handsome boy he is. We will keep praying for each of you. We were so glad to see more posts even though you're home. Everything you write is interesting to us. Thanks for your efforts to write all this and for showing us the photos which are always a joy to see.