Tuesday, January 21, 2014

Lily's Cleft Appointment

On Friday we took Lily up to All Children's for her first appointment with the cleft team. I was a little worried about how she would do because the appointment was at 12:45, which is - you guessed it - right in the middle of nap time. Add a few strange doctors shoving things in her ears and mouth, and I was expecting a total disaster. We fed her an early lunch and prayed that she would sleep in the car on the way there. She slept for about 20 minutes, then woke up crying because her poor neck was at all sorts of strange angles and her head kept hanging forward. I remembered a little too late that I could tilt her carseat back a little. (FYI she is normally not so uncomfortable, but we moved her to the Jeep and the seats are super straight up. I swear we aren't bad parents ;o)

Anyway, we got there and signed her in, she got weighed and measured, then we headed back to the room where we would see 8 different specialists. The audiologist came in first and took us back to a soundproof room to do Lily's hearing test. I went in with her and had to keep her sitting on my lap and facing forward. The wall in front of us had three sets of speakers - to the left, right and center - and positioned around the speaker were robotic or mechanical animals in boxes. There was a dog right in front of us that would bark and walk, but obviously couldn't go anywhere because it was in a clear box. That one was great for getting Lily's attention when she started squirming. To the right was a monkey playing drums, and I'm not sure what was to the left because I was instructed not to look around and influence where she looked. The audiologist would play sounds of varying volumes in the different speakers to get Lily to look at them, and then activate the animal to keep her interest. She did pretty well with most of the sounds, but there were definitely several that I heard that she didn't even react to. Oh, did I forget to mention that she finished amoxicillin the day before for a double ear infection? So basically the hearing test was kind of pointless. The audiologist said that she might have hearing loss, or she might not, it was hard to tell since she still had fluid in her ears. She recommended another hearing test in 2 months. The ENT that we saw a bit later was more encouraging. She said that her hearing test was right on target for fluid in the ears, and that when the fluid was gone she would probably have normal hearing. However, the fluid might not clear out on its own which is very common in cleft kids. Then she would require tubes. Apparently about 90% of kids with clefts require tubes. She's going to check Lily's ears again at one of her upcoming visits, and if the fluid is still there then she'll have tubes put in during surgery.

After the audiologist we saw the speech pathologist. She was impressed that Lily was comprehending many English words and that she has learned a few signs. She encouraged us to teach her more signs to help her communicate until she's able to talk and showed us a few strategies for teaching them to her. Then the social worker came in and talked to us about what to expect during our hospital stays. After that was the ENT, along with our surgeon Dr. Ruas. They examined Lily's cleft and talked a bit about what approach they would use. Dr. Ruas was hopeful that Lily would be a candidate for using braces to start closing her gum line which would enable her to have one surgery instead of two. Unfortunately when the orthodontist got there and looked in her mouth (Lily was NOT a fan of this or of him as a result) he didn't feel that he could do it with only one tooth on her left side. So that means that we will be having two separate surgeries - one for the lip and gum line and another several months later for the palate.

Next a pediatrician came in. She examined Lily briefly and asked us if we had any concerns. We didn't, but she promised to send us a developmental checklist for 18 months so we could see if Lily was on target. We also saw a pediatric dentist who thought that Lily would only be missing one tooth. He told us that if the baby tooth is missing the permanent one will be too. Last was the nurse who coordinates everything. She told us that she would be calling us in a few days to schedule our appointments.

All in all we were there from 1:00 to 3:30 and Lily did amazing! The only times she got upset were when someone was examining her. The rest of the time she was wandering around the room laughing and entertaining us. I think she was loving having two parents all to herself! She is definitely a brave little girl.

So, for those of you who want to know, here's what our upcoming process looks like.

Next Monday we will be heading up to All Children's to have impressions and photographs done of Lily's mouth. These impressions will be used to make the Latham device that will close her gum line. We have to be there at 6am, yikes! And she has to be put under which of course makes me a little nervous.

Then a week later we go back to All Children's and Dr. Ruas will put the Latham device in her mouth. The nurse told us to expect an overnight stay, which I was surprised about. I guess Lily will have to drink before they let us leave, and she will be pretty uncomfortable.

A month after that on March 3rd we go back to All Children's again for surgery to close her lip and gum line. This will be a more major surgery, and we will be in the hospital for several days.

After that she will need several months for the lip to heal completely before they close her palate. I will be glad for the break from surgeries for a bit! While the next few weeks will be busy, at least we will have this part of our journey behind us soon. We would really appreciate your prayers during this time. For Lily, that her pain would not be too unbearable and that she would feel safe with us by her side during this scary time. For us that we would be wise in making decisions and not too nervous! Also that we would be patient during her recovery. And also for Matthew and Caroline, who will be very excited to be spending extra time with Baba, but will probably struggle with the extra attention that Lily will be getting.

Wednesday, January 8, 2014

I've started drinking coffee

I've started drinking coffee. This has become my new answer when people ask me how things are going with three kids. Yes, it's true, the girl who doesn't like coffee has started drinking it. There's just something about three kids 4 and under that just sucks the energy right out of you! That and the fact that my parents conveniently bought us a Keurig for Christmas. They bought it for the hot chocolate and tea, but it came with coffee so I figured why not?! If you know me, you know that I can nap pretty much any time any where and I'm a huge fan of sleep. But now that Matthew doesn't nap every day and my amount of free time has almost disappeared, I was desperate. So coffee it is. It's not so bad.

Ok, so you probably want the real answer to that question. How are things going? How is Lily adjusting? What about Matthew and Caroline? What's it like with 3? Here is my attempt to answer you as accurately and honestly as possible.

How are things going and what's it like with 3 kids?
Amazing, exhausting, exhilarating, tough, crazy, exhausting, fun, entertaining, and exhausting. Yes, I did mean to include exhausting three times. Did you not just read about Ms. I Hate Coffee turning to the dark side? After the first two weeks home when I was thrown right into the fire with all three kids by myself and Brian working lots of hours and Saturday to make up for when we were gone, things have greatly improved. Brian took off almost two weeks over Christmas and New Year's and we really started to get the hang of things. Every day gets better and better as we figure out how to juggle three. And now we usually have all three kids in shoes when we arrive places! Bonus!

How is Lily adjusting?
Remarkably well. She has really lit up and let her personality come out. Brian took over most of the bottle feeding and bedtime responsibility when he was home, and she has really bonded with him. Now when he comes home she lights up and walks as fast as she can to the door with her arms up. So adorable! She also has said Dada a few times. I mean, super cute, but seriously why do they always say Dada first? I'm the one you slept on for two weeks! So back to Lily. I know that she was in an orphanage for the first 16 months of her life, but I honestly don't see any delays aside from her speech. She has great social interaction with her siblings and other adults, walks everywhere, attempts to climb on everyone, mimics sounds and actions, plays with all her toys appropriately, and seriously loves the fetch game. I don't know a toddler who doesn't find throwing objects on the floor and having an adult retrieve them to be the most entertaining game ever. Too bad for her this is not my first rodeo and I give her two throws before the object goes away.

As for sleeping, I am happy to report that she is now sleeping in her own crib!!! Considering that only a few weeks ago she would only sleep on me, I find this to be pretty miraculous! It all started when she fell out of our bed. Brian had put her to sleep in our bed, and we were out in the kitchen when we heard her cry. We decided to wait for a second to see if she would stop before going in there and she did. Great! A few hours later we go in the bedroom to go to sleep and find her asleep on the floor. Apparently that crying we heard was after she tumbled, but it appeared that Cajun broke her fall because she was laying half on him. Me being the amazing Mom of the Year candidate that I am, said, why don't we just leave here there? She's happy and then we can actually sleep in the bed without getting kicked in the face repeatedly! Brian, the more rational and obviously more compassionate parent, suggests that instead of that why don't we move her into the pack and play.Yes! Genius! So begins the process of getting her out of our bed. For a few days we'd put her to sleep in our bed then move her to the pack and play when we went to bed. When she was waking up happily in there we decided to try putting her to bed in the pack and play. As long as we were laying on our bed next to her she was fine. A few days later she was waking up a lot and getting mad because she was rolling into the edge of her bed. So we decided to move her to her crib in the same way. It worked! And we all finally slept soundly all night! Until last Friday. Then she got sick and was up multiple times a night. I'll tell you about that in a minute. But the last two days we've been putting her to bed in her crib successfully!

We took Lily to the pediatrician the second week we were home. As I'm driving there I realize, she's afraid of men and this pediatrician is a man! This is going to be amazing! Thankfully she was fine. She loves being in her diaper, so within minutes of being there she was quite the happy camper. She just walked all around the room playing with all the toys I brought her and then chucking them. The doctor was great with her too, and didn't have any health concerns aside from her speech. She weighed 23 pounds 13 ounces, and had gained almost a pound in 3 weeks! Then she got a few shots, poor baby. The first one she just kind of looked at me, then when she got the second one she cried but stopped as soon as I picked her up. She's so tough!

The last little Lily update is that she is currently on antibiotics for an ear infection :o( Starting on Friday night she was sleeping terribly, waking up crying almost every hour. She was also super cranky and irritable during the day Saturday. I thought it was just because she was tired, but the terrible sleeping and crankiness continued into Saturday night and Sunday. I have only experienced one other ear infection with my kids - Matthew had one when he was a baby - but she was having the same symptoms he did minus the fever. She had been congested, so I knew it was possible and ear infections are one of the complications of a cleft palate. Then Sunday afternoon she got a fever and I knew that's what it was. The poor thing was burning up even with Tylenol. First thing Monday morning I called the doctor and took her in. Fluid in both ears! Not that I want her to be in pain, but I was so glad that there was a reason for the awful sleep and crankiness. I don't know how much longer I could have survived with her that way! I missed my smiley girl! Oh, and side note, she's gained another pound. A pound in 2 1/2 weeks this time! Soon she's going to be sharing clothes with Caroline!

How are Matthew and Caroline adjusting?
They treat Lily like any normal siblings treat each other. They love her and are so sweet to her, and then they shove her down and yell at her. We are working on that second part. It didn't help that we just had Christmas and they have new toys that they aren't too keen on sharing. Now they are in such a habit of saying "No Lily" that it's their first response when she comes close to them. Something else we are working on...

It's been really fun to watch Matthew and Caroline bond with their new sister. When we were in China it took Matthew a few days to warm up to her, but then when he realized he could make her laugh he realized she wasn't so bad. He does a great job of showing her how to play with toys or how to do different things. I love listening to him explain things to her and get excited when she does them. He could do without her crying in the car though - he says that it makes him feel tired. Me too buddy! Caroline is like Elmyra from Tiny Toons. She LOVES her sister, but maybe a little too much sometimes. She really wants to help her up when she falls and give her hugs, but Lily's not such a big fan of either of those. My favorite thing is when Lily is crying and Caroline goes and brings her a toy to help her feel better. She also talks just like I do and says "It's ok cutie, don't cry sweetie, here you go Lily-boo".

What's next medically?
We will be traveling up to Tampa to meet with our cleft palate team next Friday the 17th. We will be meeting with and having Lily examined by 8 different specialists! Speech and language pathology, audiology, developmental pediatrics, plastic/craniofacial surgery, pediatric dentistry, orthodontics, psychology, and social work. This is why we are so thankful that there is a team near us. Otherwise we would be visiting all of the different places separately. While Friday will be a very long day, it will totally be worth it!

And here's what I know you all read these posts for. Here are some pictures from the past few weeks: