Wiggles & Giggles

Cleft Clinic in Bismarck

Roger must be unique in that he has been to cleft clinics in 3 different states: Colorado, Massachusetts, and now North Dakota. Colorado's cleft clinic may have been the nicest as they had all the parents and kids sit around a conference table and offered sandwhiches and snacks. It was a great way to meet the other parents and learn what their kids have gone through. In Massachusetts, I was exhausted before I even got there as it was so stressful to drive there and park. Once you got there, you were there all day. One time, Roger (a toddler at the time) and I were there for 6 hours. I got to know one mother there as we both happened to go to the same clinic twice in row (a rarity - you usually don't see the same people twice.) And now,  a cleft clinic in North Dakota (which I didn't even know existed until Roger's speech teacher told me about it.) North Dakota's clinic was different in that it was free -- no co-pays! And, it was much faster. We didn't sit for long before our name was called again. It was about a 3 hour visit. 

He passed his hearing test with flying colors. The doctors think he says the "K" sound really well. They kind of disagree with what the doctors in Boston want to do. But, I have come to learn that every plastic surgeon has a different opinion. They all agreed, though, that he needs an expander, which he is getting in place this Friday. They weren't sure that a bone graft this early was wise, although they said they knew that the practice of waiting was changing. They understood wanting to fix the nose earlier rather than later so that Roger would not have to go his entire childhood with a "different" looking nose.

In April, we will head to Boston, and they will evaluate how the expander is doing. They will decide at this point whether or not a pharygeal flap surgery is necessary (the doctors in Bismarck did not think he needed it.)

All I can say is that I couldn't be happier with how cooperative Roger is through all of this. It seems to be a perfect window of time to get all of this done.

Roger's Speech Journey

 

4 year old at the Orthodontist

Roger visited the department of dentistry at Children's Hospital last week. They wanted pictures of his teeth to determine what kind of fixture he will need to push the premaxilla into place. They took bite-wing x-rays and a panoramic x-ray. The dentist had some trouble adjusting the panoramic x-ray to his height. First she had him standing up -- she was worried that this would not be stable enough. Then she had him sitting in a chair -- then he wasn't tall enough. Then she had him sitting a booster on a chair -- for some reason that didn't work. Then she had him sit on a stool. Roger was very agreeable and patient through the whole thing, and then he said, "Do I get a prize for this?" She said that he would -- and I was thinking, "He better!" Once she got him in the right position, it took a few tries to get the machine in the right position, and then finally she got it to work.

Next, we went to another room where they mixed up molding clay and filled up dental trays to take impressions of his teeth. I was kind of worried about this part as it can be an uncomfortable process. The dentist had to hold the tray in place for 10 seconds for both the top and the bottom teeth. He did great through this process and didn't fuss or complain at all.

Then, they held is mouth open with mirrored metal mouth graspers and took photographs of his teeth. They took what seemed like 50 photos. Then they took some more photos of him standing in the hallway of his teeth straight on and of his profile.

Roger was unbelievably compliant through this. I think he actually had fun.

For some reason this department of dentistry at Children's Hospital does not have the traditional treasure chest of prizes, but she gave him some stickers and a toothbrush. I told him we would get him another prize when we got home. He requested a Slinky.

Cleft Team

Today was the annual Cleft Team Evaluation. It's a long day, but it actually went really well. To give you an idea of how these appointments go, let me break it down.

First, I must give compliments to my GPS as Boston is a little confusing to navigate. Plus, I am directionally challenged.

We arrived at Children's Hospital at 1:30. The first task was to get Roger's picture taken. While waiting, the kid ahead of us was screaming bloody murder. I kind of smirked to myself, because a couple of years ago, Roger did the same thing. There was nothing you could say to convince him that it was just a camera and the man was just going to take his picture. But, today, thankfully, Roger was in good spirits. I told him that the photographer was going to tell him not to smile. Roger showed me a big scowl and asked if he should make his face like that. I told him to just have a normal face. Finally it was our turn, and the photographer said, "Don't smile." He took a picture of him straight on, the profile, and a view of him with his head tilted up. When we were done, he told the next kid, "You don't have to smile."

We waited in the waiting room where Roger joined a group of kids playing basketball in the waiting room. 

At 2:00, we went to have his speech evaluated. She had him look at a book of pictures and had him name the object. She also asked him some questions, like "What is your favorite movie?" He said, "Cars." Then she asked "What happened in the movie?" His response was, "I don't know." She asked too many open ended questions like that. She said that he has improved quite a bit from last year, but that he still wasn't quite where she thought he should be. She recommended that he get speech therapy 3 times a week, rather than 2. She also suggested a pharyngeal flap, which closes off the nasal cavity in the back of the throat to prevent any nasal sounds, which no amount of speech therapy would help. She didn't know when the best time for this would be. She would have to talk to the surgeon. Then, we went back to the waiting room again.

2:30 - 4:15 -- I talked to another mom. Roger played with her ten year old son and they got along well. For some reason, this amount of time flew by and it really didn't seem like it was that long.

At 4:15 we saw Dr. Mulliken, the plastic surgeon. He said that Roger's lip looked good and that his scars looked good and that his nose was not too wide. Then he measured all his various parts and the numbers showed that his nose was actually a little wide, but to him, it didn't look wide. These were all great compliments coming from him because he his very blunt and to the point. He doesn't sugar-coat anything. We talked about the pharyngeal flap and he thought that it needed to be done within a year. He wants to fix his nose, but before that is done, we need to push the premaxilla back. For that, we needed to talk to the orthodontists.

We went to another room to talk to the orthodontists, Dr. Bruun and Dr. Kennedy. They looked at his teeth and thought Roger was an interesting case because his premaxilla houses both lateral incisors (the teeth next to the two center teeth) where as most cleft kids are missing those. They thought it would be a good idea to get impressions of his teeth to see how he would tolerate that. If he tolerates it well, then they will consider putting a fixed appliance on his teeth to push back the premaxilla in the "keystone" position.

Once his teeth are in position, they would do a bone graft to fill in the cleft in his gumline, and then, Dr. Mulliken would fix his nose. 

I am not sure on the timeline of all of this . . .I am just taking one step at a time. First, we will take pictures and impressions of his teeth, and we will go from there.

At 5:00, we started back home. Again, thank you, GPS.

 

 

Phoning In

Roger is becoming better and better with speech. He called me the other day with his McDonald's order and it was quite clear: Chicken nuggets and fries and chocolate milk and a toy - and that's it.

There's just something about hearing a young little voice on the phone. So sweet!

Yesterday he saw a picture of Snoopy as an astronaut and he said, "Mom, we should go to space. Dad and Calvin and you and me. And the two cats. [pause] Maybe we should leave the cats at home. They might get lost." I said, "Will you get lost in space?" He said, "No, I will stay in the spaceship." 

Maybe in your lifetime, kiddo. You never know.

Don't laugh at me

As we were waiting in the hall for preschool to start, my son decided to proudly show off his dinosaur shirt to the other kids in his class. Sitting next to his mother, one boy said, "Ew -- it's uglier than you." This caused me to stiffen up and look the other way pretending I didn't hear it as his mother whispered something to him. The little snide comment didn't seem to phase my son, though. He continued to show his shirt to other kids. Another mother tried to put a proverbial band-aid over it by asking my son questions about his shirt like, "What kind of dinosaur is it?"

This isn't the first time this little red head said something cruel. It was the red head's second day of school when he pointed at my son and said, "He talks like a dog."

My only solace is that my son doesn't seem to be bothered by any of this. He says he loves school. He asks me everyday, "Do I have school today?" He even had a playdate with the red head and another boy and said, "It was so fun!"

So, I'm glad the little jabbing insults to my son bead up like water on a duck's back. Not for me, though. I don't take it quite so well. Just writing this caused me to well up with tears streaming down my face. But, I would much rather absorb the pain than have my son endure it.

 

 

The Mask

I showed Roger pictures of himself when he was a baby when he was wearing the NAM device. He asked, "Why am I wearing that mask?" I never thought of it as a mask. But, I guess that is a good euphemism. He wore his "mask" for 20 weeks starting when he was just 2 weeks old. It is actually called a few names. Obturator is one of them, and NAM device or Nasoaveolar molding device is the other. I called it a retainer when people would look questioningly at my baby. The idea was to align the tissues to make them more favorable for surgery. It was strange taking my newborn to the dentist, but it was really a blessing just to be there with other moms that were in the same boat as me. For some moms, it was their first baby. For others (like me), it was their second, the first having no cleft issues. I looked at each of the moms to determine if we shared any common traits as a way of maybe explaining how the cleft came to be. But, of course, we were all different -- different ages, different nationalities, and different personalities.

One mom didn't find out their baby had a cleft until after she was born. Even though it was difficult to find out the news during a sonogram, I was later grateful to know ahead of time so I could prepare. I scoured the internet for information, talked to surgeons, went to a cleft clinic, and talked to other moms with babies who had clefts -- all before Roger was born.

When I look back on this time, I remember feeling overwhelmed and scared. But one thing helped me once I realized this: It wasn't about me. It was about him. He was going to have to deal with all of the problems associated with clefts and he needed me to be his advocate, his rock, and of course, his mom. 

Roger at 3 weeks old in his Snuggle Nest. He needed to sleep propped up at a slight angle to keep from spitting up.

Furrowing his brow at me at 3 months old. I sure don't miss all that tape!

This is Roger performing Wiggles & Giggles. I love this picture. It's pure joy.

LEGO Engineering Competition

For 5 months, Calvin and his team have been preparing for the LEGO Engineering Competition. I was amazed at the complexity of this project. The theme was The Body. Fouth and fifth graders created objects representing a bone, a heart, and brain using LEGO. The main part of the project was the LEGO robot. The robot was created with LEGO and was programmed to move in certain directions, to turn at certain points, and to follow a line on the board until it reach its destination. The robot would move to make a broken bone whole again. It delivered medicine. It repaired a heart valve. Each mission performed successfully was worth a certain number of points.

Their competition was last Saturday. One of the challenges of the competition was that all the teams were out of their comfort zone of not being able to use the table they practiced on all these months. They used tables that were set up by the LEGO League organizers. It was intense to watch the teams competing again each other. You could see panic and disappointment in the kids' faces if their robot malfunctioned. At the same time, kids rejoiced when their robot performed successfully.

Each team also gave a presentation on a health subject of their choice. Some of the presentations were decidedly boring where the kids did nothing more than stand and read from a report. Calvin's team decided to give a presentation on skin in a game show format. Calvin was one of the contestants. His group did very well and got the maximum number of points for their presentation.

Calvin's team, the LegoManiacs, got fourth place out of 13 teams. Only the first place teams got a trophy and I think that's the way it should be. It only makes you want to try harder next time. Calvin got a ribbon and a certificate and came home proud of his achievement.

Pictures!

Roger, age 3; Calvin, age 9

 
Christmas Time, Playing with Slot Cars:  Roger, age 4, Calvin almost 10

 
Can you roll your tongue?

 
Catching Snowflakes! 

The Speech Journey

Little Roger was born with a bilateral cleft lip and palate. When he was born, I was optimistic that we would not have the same speech problems that other cleft kids have, as his brother learned to speak really well before he was two. I also thought that listening to us and his older brother would help him learn how to speak correctly.

At age two, he was not saying any real words. There was a lot of whining and grunting and pointing. This was probably the hardest time because everyone, including Roger, was frustrated that we did not understand him.

We had some success with communicating by learning signs from Signing Times.  He was able to sign Yes and More and other basic signs which helped get the message across. One thing I noticed is that he really understood everything that we were saying and readily followed directions.

He started speech therapy at age two. I am sure that it did some good, but I didn't notice any vast improvement until he started pre-school at the age of three.  When he started, I remember saying that his speech was poor. It made me sad to say such a thing, but truthfully, I, as his mother, could not understand much of what he was saying.

One of the biggest break-throughs was when we started enunciating each syllable. We started to make sense of what he was saying as he progressed from making one-syallable grunts to multi-syllable grunts. Yes, they were still grunts. But, it was evident that he was making progress. We helped teach him the different sounds by clapping out the syllables of each word. Like Ba - Na - Na.

Now at age 4, people that are not normally around him are able to understand some of what he says. His speech report has gone from poor to fair. P's and B's have been the most noticeable struggle. He usually substitutes those for a G sound. But, just recently, he has been able to make both of those sounds, it just isn't consistent. We now need to help him remember which words have the P and B sound. 

So, it's a long and sometimes frustrating road. I am thankful for the speech therapists and enjoy applying their techniques. I am just glad he has whole year and a half before he starts kindergarten.