Jacinda's Appointments Today

Today, we went to CHKD to see Jacinda's craniofacial team of doctors.  We got mostly good news.  Here's a rundown of what happened ....

1.  First we saw an orthodontist.  He thought Jacinda's teeth looked great.  He said she won't need any orthodontic or surgical work done until she gets her permanent molars, which is around age 6-7.  He recommended we start taking her to a pediatric dentist.  He said that she will be spending a lot of time in a dentist's chair in her life, so we might as well get her used to it now.  Fortunately, the dentist he recommended IS covered by our insurance!

2.  Next, she saw an ENT.  He cleaned all the wax out of her ears.  We've had several doctors tell us she has tons of wax, but no one has wanted to attempt to get it out!  We held her down and she actually did really well!  After that, the ENT looked in her ears and said there was NO fluid.  Zero.  For a cleft kid, that's amazing news!!!  This means no ear tubes!!!!!!!  Structurally, he thought everything looked great .... ears, nose, mouth.  He was glad to hear that she will have another hearing test next month.  He told us to please call him if we had more questions, or if she needed the wax cleaned out again.

3.  Next up, her surgeon.  He thought her palate looked great.  She does have 2 teeth coming in in the roof of her mouth.  It's kind of strange, but totally normal for a cleft kid.  He thinks one of them might start to cause problems, so he thought the pediatric dentist idea was definitely a good one.  The other issue we talked about with him was Jacinda's nose.  Her left nostril is very small.  During her palate surgery, he did try to make it a little larger.  He had warned us beforehand it would be difficult.  He said it's harder to make something bigger than smaller.  Right after surgery, it looked great.  Now, it's collapsed back down at least to where it was before.  The problem is that whenever she has a runny nose (which is often), that nostril gets crusted shut!  He wants to wait at least 6 months to a year before even thinking about another surgery on it.  Even then, he's not sure if we should do it.  So we'll reevaluate sometime next year.

4.  Finally, the speech pathologist (SP).  This is where we had probably the biggest concerns.  With just a brief observation, the SP put Jacinda at about the level of a 16 month old as far as expressive language (this is what you can say or express) goes.  Her receptive language (this is what you understand) was much closer to her actual age.  So the SP was concerned that there was such a large gap.  She was impressed that Jacinda has improved so much in the 7 months she's been home.  Basically, she thinks that our current speech therapist has done a good job, but now it's time to get aggressive.  The SP thinks Jacinda would benefit from speech therapy done in an office setting rather than here at our home.  So we got a referral to their speech therapy department.

So here's our To-Do list we took home:

1.  Call our insurance to find out how we can switch speech therapists.  Our insurance makes this very complicated, of course.  Right now her therapy is done through the Virginia Beach school system.  Our insurance has no "in-network" speech therapists in our area.  So that will be a loooong phone call!!!
2.  Once we figure that out, make an appointment with the new speech therapy office.
3.  Call Jacinda's pediatrician and get an appointment to get her evaluated for allergies.  We had hoped her constant runny nose would get better after her palate surgery.  It hasn't.
4.  Call the pediatric dentist.

In Case You Don't Believe Me ......

In case you don't believe me that Jacinda is a handful, here's a story to start out your week!  Luke was watching a movie on our desktop computer and Jacinda was sitting next to him in a different chair.  They appeared to be fine, so I left the room.  (Big mistake).

A few minutes later, I hear a huge crash.  I ran into the family room and see Jacinda laying on the floor and the TV laying on the floor next to her.  Luke is calmly watching his movie on the computer.  Somehow, Jacinda managed to pull the TV off the little table it sits on.  I don't know why or how.  She is fine.  At least it was a crappy TV ... not sure if it will survive or not.  I think it bounced off the fireplace and landed on the floor.

I asked Luke why he didn't tell her to stop or why he didn't call me to come get her.  (He tattles on her for everything else!)  He said he didn't know.  *sigh*

Happy Monday, everyone!!!

Monkey Adventures - Jacinda's Antics

Before 9 am today, this is what Jacinda has accomplished .....

- Falling off our bed. I think she was "hugging" the cat and the cat jumped down, so Jacinda fell off. Onto her head. Of course.
- Dumping milk all over her and Luke's little couches. (I'm sure that wasn't grammatically correct. Sue me.)

This girl keeps me running. Sheesh. It's really just funny at this point!

Jacinda's Follow-Up Appointment

We saw Jacinda's surgeon today. He was VERY impressed with how well her palate is healing after only 2 weeks. He saw NO signs of a fistula (which, as I understand it, is a place where the palate opens back up). He wants to see her back in 6 weeks and then he wants the entire craniofacial team to see her in 6 months. At that point, we'll evaluate how she's doing and see where to go from there. At this point, he thinks she will not need another surgery for several years!!!!!! Although, he did say that he wants to keep an eye on how her nose heals and if the left nostril collapses back down, he might want to try to fix that.

The best news he gave us was that we can start giving her crunchy foods to eat again! He told us to not go crazy .... give her things slowly and see how it goes. He also said we can start introducing a straw in another week.

Her speech therapist thinks that once we can teach her to use a straw, her speech will greatly improve. She learns new words every week. The words we can understand are: mama, moon, uh-oh, and night-night. She also is using a lot of signs: eat, drink, potty, help, hurt, kitty, and more.

So things are going really well!!!!!!

Monkey Adventures - Luke's Pineapple

Luke has always had an interesting relationship with food. It's either all or nothing with him. He must be getting ready to grow, because he's eating us out of house and home at the moment! (Luke, please don't get any taller until it's warmer outside! Your pants are already too short!!!!!)

He's been on a fruit kick lately ..... There are definitely worse things, I suppose! Over the weekend, he ate an entire cantaloupe in 2 days. Yesterday and today, he ate an entire pint of blueberries! At the grocery store on Sunday, he saw whole pineapples and asked if we could get one. I said no, that we had lots of fruit at home.

Last night, all 4 of us went to BJ's. Luke saw pineapples again, and asked for one. I said we would get one soon. Well, for the next 20 minutes that we were shopping, he kept asking for a pineapple. He wasn't throwing a fit about it, he was asking nicely. So a pineapple came home with us. I suspect it won't last long around here!!!!

I find it funny that some kids bug their parents for candy or toys when they are shopping. Luke bugs us for fruit!!!!!! I love that kid!

Sunday Update - Jacinda

Today is Super Bowl Sunday. Jacinda is in no shape to be out celebrating, so I'm home with the maniacs and thought I'd post while they're wrestling with each other!!!!

We think Jacinda has a cold. She is miserable, which is making the rest of us miserable. Her nose is a faucet, and every time I wipe it, she cries. She didn't sleep much last night. I'm not sure if that's because she couldn't breathe so well or what. I think the Tylenol with Codeine is disrupting her sleep. When she wakes up, she just cries and cries. So 2 strikes on the sleeping situation. Tonight, I think we'll try going with regular Tylenol and see if that helps at all.

Food - Poor girl is SO hungry. She just cries and cries. Today we graduated to scrambled eggs and she enjoyed that! At dinner tonight, she managed to spill her cantaloupe/yogurt smoothie all over the carpet and the cat. Poor kitty. He's going to smell like cantaloupe for a while because I am NOT giving a 25 pound cat a bath. Forget it!!!!! Jacinda is apparently a champion spiller .... there was yogurt 10 feet away in several directions!!!!!

Liquid/Soft Food Diet

So Jacinda is on a liquid/soft food diet for 2-3 weeks. This girl is miserable. She eats more than we do!!! Here's what I've come up with that she can eat.

Yogurt
Jello
Pudding
Smoothies - yogurt, milk, fruit - I may even try to sneak in some wheat germ for some extra protein and other good stuff.
Mashed Potatoes
Baby Food
Carnation Instant Breakfast
Ice Cream
Applesauce - plain and with cinnamon
Pureed veggies
Noodles (probably in another few days)

I'm trying to give her things that are healthy, but that she'll actually enjoy. If you have any ideas, let me know!