We've been so busy this summer! Mostly trying to stay cool. I think we're all ready for fall around here. Luke starts preschool right after Labor Day and I think he's going to love it!!!
This coming Monday, Jacinda is having an endoscopy and colonoscopy. Because of her age, she will need general anesthesia. The doctor says it should only take about an hour. She's having it done because she continues to have horrible diarrhea. All her tests so far have been normal. Her doc is sure these tests will also be normal. I sure hope so, but the diarrhea is truly awful. Everywhere we go, we carry 2 changes of clothes and she often needs it. So we'll see what happens.
In even bigger news, we're waiting on a phone call with the surgery date for her tongue, nose, and palate. Back in May, her surgeon, Dr. Inciong, said that he wanted to wait at least 6 months, maybe a year, and then do some more work on her nose. Her left nostril is tiny and he had opened it up a bit in February, but it had collapsed again. So he said we should wait a while until she gets bigger and then re-evaluate.
A few months ago, she started having nosebleeds on that side. They aren't too bad, but just enough to make a mess. So last week, I called and made an appointment to see Dr. Inciong.
Around the same time last week, I was practicing words with her. I realized that she wasn't lifting her tongue up to make certain sounds, like "l" and "t". For a while now, I've been frustrated that she hasn't been making much progress with her speech. We and her speech therapist have been chalking it up to being 2 and being very stubborn. But I started wondering if she was "tongue-tied." None of her doctors or speech therapists had ever mentioned that this was a possibility.
So I asked Dr. Inciong today to take a look, since we were there anyway. He said she is definitely "tongue-tied". It's where the little piece of tissue under the tongue is too small and doesn't allow you to lift your tongue up or stick your tongue out. For some people, it's not severe and they are able to compensate. For Jacinda, it's definitely interfering with her speech, so Dr. Inciong says we should take care of it immediately. Unfortunately, because of her age, we're looking at general anesthesia again.
He said that while he's in there, he'll take a look at her nose and very possibly go ahead and try to make that left nostril larger again. He thinks the insides of her nostril are touching and "sticking" together and that's what's causing the nosebleeds. He also will take a look at her palate and make sure there are no holes in it.
Hopefully this surgery will be soon! I'm expecting the nurse to call either tomorrow or early next week.
Thursday, August 12, 2010
Monday, July 5, 2010
2010 Family Vacation
We just got back from our vacation to PA. I had meant to blog along the way, but we were so busy. So this entry will be long! Pictures will come soon!
Friday, June 25 - We left early to head up to Aaron's family reunion in NE Pennsylvania. It's an 8 hour drive and the kids did pretty well for the most part. They each had a couple of times where they really wanted to get out. We arrived at the campsite around 6 pm. Our plan was to camp with Aaron's parents, brother, sister-in-law, and nephew. Aaron's family has property, so we camped there. His aunt and uncle had rented a large tent with a table and chairs and a port-a-potty for the weekend.
Luke slept in his Grammy and Grampy's camper with them and the rest of us slept in the pop-up camper. Oh, and we also brought our crazy dog with us! She did really well with all the new people. Luke caught a cold while we were camping, but he bounced back pretty quickly. Jacinda did not sleep well at all ..... once she fell asleep, she was fine, though.
Saturday, June 26 - We went to see Aaron's Aunt Diane. The kids and I had never met her, so that was good. We also saw his grandma and grandpa. That evening, we went to his cousin, Lisa's, farm. We had fun hanging out with all the cousins and kids. The kids LOVED seeing the horses and the 3 baby cows. Lisa even let the kids take horse rides!
One of Aaron's cousins has 3 kids, ages 4, 2, and 9 months, so our kiddos had plenty of playmates!
Sunday, June 27 - This was the day everyone was coming to the campsite for the reunion. We spent the morning getting all the food ready and everyone started coming around lunchtime. We all had a great time!
The kids spent some time in the river, mostly throwing rocks in the water!
Monday, June 28 - We headed out of the campsite in the morning. We went to Allentown to have lunch with some friends of ours who had moved up there to start a church. Some of them had not yet met Jacinda, so it was fun to see them and spend some time talking.
Next up, Philadelphia! We were actually staying in New Jersey and we arrived at our hotel late in the afternoon. That night, we spent some time deciding what to do the next day, we cooked spaghetti for dinner, and we went to IKEA!
Tuesday, June 29 - Tuesday was supposed to be the hottest day of the week, so we decided to go to the Adventure Aquarium. We loved the hippos! We got to see them up close and they were fascinating!
We cooked burritos at our hotel that night and then went swimming at the hotel pool. We did some shopping that night to find the kids floaties for the pool, but we were unsuccessful!
Wednesday, June 30 - The weather was gorgeous today!!!! We went to the zoo and it was HUGE!!! It made our zoo in Norfolk look like a neighborhood park! We were SO exhausted by the time we were done. Plus, I was starting to come down with Luke's cold.
After the zoo, we ate a late lunch at Baja Fresh and finally found the floaties we wanted. We went back to the hotel and used the new floaties in the pool. Jacinda freaked OUT this time in the pool. We think she was just overtired.
We went to a local park that was really nice and then decided to find some dessert. We ended up eating a quick dinner at A&W and then dessert at Dairy Queen.
Thursday, July 1 - We needed a low-key day, so we slept in and went to the Children's Museum in Fairmount Park. The kids LOVED playing there. We ended up staying there for around 5 hours!
Aaron wanted a real Philly cheesesteak, so we picked Tony Luke's since they had other things for the rest of us to eat. So we get there and they're "out" of everything but cheesesteaks. Convenient. Aaron got his cheesesteak and then we went to Chick-fil-A for the rest of us!!! Aaron did eat his cheesesteak in Chick-fil-A!!!
After that fiasco, we went back to the park for a while.
Friday, July 2 - Our last day in Philly. We did SO much today!!!!! First, we went to the US Mint. It was a bit disappointing because it seemed like they hadn't started operations for the day. But at least we got to go there.
Then we got on the double decker bus tour and rode it to the Academy of Natural Sciences. We sat on the top of the bus and the weather was just perfect!!! The ANS was fun. We saw dinosaurs, or as Luke says, "They're actually just dinosaur bones, not real dinosaurs.", real butterflies, and the kids got to touch a few live animals (rat, hissing cockroach).
Then we went across the street to the Franklin Institute, which is a science museum. Most of the stuff there was too advanced for our kiddos, but they had fun.
Then we rode the trolley back to the start and walked over to see the Liberty Bell. We didn't stand in the huge, long line to go inside and see it. We found a window, stood on our tiptoes, and saw it just fine!
By then we were exhausted!!! We drove back to our hotel for a little downtime. Then we went to dinner at a great Italian place my friend has told us about.
Saturday, July 3 - We drove to Annapolis, MD and met our friends for lunch at Chevy's. We always have to get a Chevy's fix when we are anywhere near one!
Then we drove home. Even though it is a 4 hour trip, we can never make it in anywhere close to 4 hours. This time, it was close to 6 hours. We got off 295 onto 64 Eastbound in Richmond and traffic was just stopped. It was still over 60 miles home, and I cannot sit in traffic for that long. So we used our GPS to figure out another way home. It still took a while, but at least we were driving and not sitting. During that drive, we came up with our plan for our next few family vacations .... we'll share it when we figure it out a little more. It was SOOOOO nice to be home!!!!!
Pictures coming soon!
Friday, June 25 - We left early to head up to Aaron's family reunion in NE Pennsylvania. It's an 8 hour drive and the kids did pretty well for the most part. They each had a couple of times where they really wanted to get out. We arrived at the campsite around 6 pm. Our plan was to camp with Aaron's parents, brother, sister-in-law, and nephew. Aaron's family has property, so we camped there. His aunt and uncle had rented a large tent with a table and chairs and a port-a-potty for the weekend.
Luke slept in his Grammy and Grampy's camper with them and the rest of us slept in the pop-up camper. Oh, and we also brought our crazy dog with us! She did really well with all the new people. Luke caught a cold while we were camping, but he bounced back pretty quickly. Jacinda did not sleep well at all ..... once she fell asleep, she was fine, though.
Saturday, June 26 - We went to see Aaron's Aunt Diane. The kids and I had never met her, so that was good. We also saw his grandma and grandpa. That evening, we went to his cousin, Lisa's, farm. We had fun hanging out with all the cousins and kids. The kids LOVED seeing the horses and the 3 baby cows. Lisa even let the kids take horse rides!
One of Aaron's cousins has 3 kids, ages 4, 2, and 9 months, so our kiddos had plenty of playmates!
Sunday, June 27 - This was the day everyone was coming to the campsite for the reunion. We spent the morning getting all the food ready and everyone started coming around lunchtime. We all had a great time!
The kids spent some time in the river, mostly throwing rocks in the water!
Monday, June 28 - We headed out of the campsite in the morning. We went to Allentown to have lunch with some friends of ours who had moved up there to start a church. Some of them had not yet met Jacinda, so it was fun to see them and spend some time talking.
Next up, Philadelphia! We were actually staying in New Jersey and we arrived at our hotel late in the afternoon. That night, we spent some time deciding what to do the next day, we cooked spaghetti for dinner, and we went to IKEA!
Tuesday, June 29 - Tuesday was supposed to be the hottest day of the week, so we decided to go to the Adventure Aquarium. We loved the hippos! We got to see them up close and they were fascinating!
We cooked burritos at our hotel that night and then went swimming at the hotel pool. We did some shopping that night to find the kids floaties for the pool, but we were unsuccessful!
Wednesday, June 30 - The weather was gorgeous today!!!! We went to the zoo and it was HUGE!!! It made our zoo in Norfolk look like a neighborhood park! We were SO exhausted by the time we were done. Plus, I was starting to come down with Luke's cold.
After the zoo, we ate a late lunch at Baja Fresh and finally found the floaties we wanted. We went back to the hotel and used the new floaties in the pool. Jacinda freaked OUT this time in the pool. We think she was just overtired.
We went to a local park that was really nice and then decided to find some dessert. We ended up eating a quick dinner at A&W and then dessert at Dairy Queen.
Thursday, July 1 - We needed a low-key day, so we slept in and went to the Children's Museum in Fairmount Park. The kids LOVED playing there. We ended up staying there for around 5 hours!
Aaron wanted a real Philly cheesesteak, so we picked Tony Luke's since they had other things for the rest of us to eat. So we get there and they're "out" of everything but cheesesteaks. Convenient. Aaron got his cheesesteak and then we went to Chick-fil-A for the rest of us!!! Aaron did eat his cheesesteak in Chick-fil-A!!!
After that fiasco, we went back to the park for a while.
Friday, July 2 - Our last day in Philly. We did SO much today!!!!! First, we went to the US Mint. It was a bit disappointing because it seemed like they hadn't started operations for the day. But at least we got to go there.
Then we got on the double decker bus tour and rode it to the Academy of Natural Sciences. We sat on the top of the bus and the weather was just perfect!!! The ANS was fun. We saw dinosaurs, or as Luke says, "They're actually just dinosaur bones, not real dinosaurs.", real butterflies, and the kids got to touch a few live animals (rat, hissing cockroach).
Then we went across the street to the Franklin Institute, which is a science museum. Most of the stuff there was too advanced for our kiddos, but they had fun.
Then we rode the trolley back to the start and walked over to see the Liberty Bell. We didn't stand in the huge, long line to go inside and see it. We found a window, stood on our tiptoes, and saw it just fine!
By then we were exhausted!!! We drove back to our hotel for a little downtime. Then we went to dinner at a great Italian place my friend has told us about.
Saturday, July 3 - We drove to Annapolis, MD and met our friends for lunch at Chevy's. We always have to get a Chevy's fix when we are anywhere near one!
Then we drove home. Even though it is a 4 hour trip, we can never make it in anywhere close to 4 hours. This time, it was close to 6 hours. We got off 295 onto 64 Eastbound in Richmond and traffic was just stopped. It was still over 60 miles home, and I cannot sit in traffic for that long. So we used our GPS to figure out another way home. It still took a while, but at least we were driving and not sitting. During that drive, we came up with our plan for our next few family vacations .... we'll share it when we figure it out a little more. It was SOOOOO nice to be home!!!!!
Pictures coming soon!
Tuesday, May 18, 2010
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.
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.
Monday, April 12, 2010
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!!!
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!!!
Wednesday, February 24, 2010
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!
- 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!
Thursday, February 18, 2010
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!!!!!!
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!!!!!!
Tuesday, February 9, 2010
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!
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!
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