Craniofacial Team Visit

On April 25, we had another craniofacial team appointment. We were scheduled to meet with four team members, but the plastic surgeon was absent, so we just met with the speech pathologist, dentist, and pediatrician.

Once we walked in the building, Gavin quickly realized where we were and his fear of doctors set in. He began crying, "Go home! Go home!" He was terrified and the mommy in me just wanted to scoop him up and drive home as quickly as we could. I was holding him and telling him that it was going to be okay, but he wouldn't calm down. The other parents were giving me looks like they were hoping we would leave, and honestly, I wanted to thumb my nose at them! We waited about 45 minutes before going in and once we were alone in the room, Gavin was fine. He was in good spirits as long as no "doctors" were in there with us. Since his speech is so amazing, I was anxious to hear what Heather--the speech pathologist--was going to say this time. Unfortunately, Heather was out on maternity leave so we saw someone new. However, after asking some questions and hearing Gavin talk a bit, she determined that he is definitely advanced with his speech and is on the high end for everything speech-related. Woo-hoo, Gavin!! I was so proud of him. I knew his speech was pretty amazing, but to hear a speech pathologist confirm it was very nice. She said that he should be saying 2-3 word sentences by this time and he was saying 5-7 word sentences!

Later, we saw the dentist, who said that everything looked good and that we should continue brushing his teeth twice a day.

Our final visit was the pediatrician. However, Gavin was ready to go home before he arrived. I told him that we still had to see one more doctor and our conversation went like this:

Gavin: "Doctor go?" (Translation: Where did the doctor go?)

Me: "I don't know, bud. He should be here in a minute."

Gavin: "Doctor hungry, he go home. Eat burrito - beans and cheese."

I laughed hysterically! I couldn't believe he was actually trying to get me to believe that the doctor went home to eat so we'd better just go home ourselves. What a smart little guy!! Then, when the doctor arrived a few moments later, Gavin quickly ran over to the little kid-sized chair, laid his head down and made snoring noises! So I said, "I'm sorry, Dr. Elmendorf, Gavin's sleeping, I guess you can't visit with him today." He found that quite humorous! When I told him about the burrito story, he laughed so hard and asked, "Are you sure he's only two?" He said that for someone who just turned two to be making up stories is remarkable. He said he was going to share the burrito story with his wife later because she would just love it.

Once we got down to business, Dr. Elmendorf said that Gavin should be taking a multi-vitamin (which he is now doing). Also, after sharing my recent discovery of my hearing loss, he told me that research has shown that certain types of hearing loss have been linked to a chromosomal defect. Therefore, I may have inherited the hearing loss from my mom, who may have inherited it from her dad (both wore hearing aids), and unfortunately, there is a chance that I may pass it on as well. At this point, I hear well enough that I don't feel hearing aids are necessary, so I guess only time will tell when it comes to my hearing. And, Gavin seems to hear just fine at this point, so once again, time will tell.

Anyway, overall it was a good team visit. Getting confirmation from two of the team members that Gavin is advanced was very nice! I knew he was a genius, but it's always nice when others recognize it as well (hee hee!). I just hope the team visits will get easier on Gavin as he gets older.

Craniofacial Team Visit

We went for another craniofacial team visit on October 25. This time we only met with the speech pathologist, Heather. She had requested to see him six months from his last visit to ensure that his speech was continuing to develop appropriately. Of course, we waited for what seemed like the usual several hours before we got to see her. So, Matt and Gavin passed the time by making paper airplanes and running around the room.

Paper airplanes

Listening at the door

Digging through Mama's purse

When Heather came in, I was prepared with his flash cards in tow to show her just how brilliant my little Gavin is. Unfortunately, he wasn't really interested in showing her anything. It seems like any time someone remotely resembling a doctor gets near him, he freaks out (I definitely don't blame him, after all he's been through already). So, she asked us a few questions and determined that he should be saying two-word phrases, such as "hi doggie" or "dada work." Now, I thought she was going to rave about how incredibly intelligent and advanced he is, so it wasn't quite the response I had been anticipating. However, I felt better after talking to a few friends because they agreed that it seemed odd that Heather said that most 18-month-olds are using two-word phrases regularly. In any case, we took her advice and began working on two-word phrases shortly after the appointment.

Annual Cranio Team Appointment

Gavin had his annual craniofacial team appointment at Loma Linda on April 19. We started by meeting with Heather, the speech pathologist who worked on helping Gavin learn to use a bottle before I returned to work. She asked about his speech sounds and if he was saying any words yet. We told her that he babbles constantly, but has not said any words with meaning at this point. We have been working on "mama" and "dada" but to no avail. She said that she would like to see him again at about 18 months, just to make sure that he is saying a few words by then. However, she is not overly concerned about his speech, since he is saying so may consonant and vowel sounds.

Next, we met with the pediatric team dentist, who came with two assistants. Gavin didn't like them from the moment they walked in. Not because they weren't nice people, but because Gavin becomes extremely upset whenever anyone wants to touch or look in his mouth. Matt and I think that it probably stems from memories of his lip repair. Poor guy has already been through so much! I had to hold him down while they looked in his mouth. He screamed the whole time and it was traumatizing for both of us. The dentist said that we should move from just using a finger toothbrush to using an actual stage 1 toothbrush with water daily. She also recommended that we bring Gavin to see a pediatric dentist since it is beneficial to get cleft-affected children checked out early.

Our third and final team doctor of the day was the plastic surgeon. This time it wasn't Dr. Martin, who did Gavin's surgery, but another surgeon whom we hadn't met before. He was very nice, but had some unfortunate news for us - Gavin would probably need two additional surgeries! He explained that Gav would need a second aveolar ridge (gum line) surgery when he is about 7 or 8 years old and possibly another surgery on his nose sometime down the road. We were definitely not thrilled to hear the news, but he was able to explain the reasons why and helped it all make sense to us. He said that if Gavin does not have a second gum line surgery, he risks losing some of his adult teeth, which we certainly do not want. And the nose surgery may need to be done to prevent the risk of the nose collapsing over time, which, of course, we definitely do not want to happen. At this point, I am wearing my rose-colored glasses and hoping that he won't need any more surgeries, but I guess only time will tell.

Loma Linda Visit

We had a craniofacial team appointment on Monday. Dr. Elmendorf had wanted to see Gavin regarding a head x-ray that we had done back in July. He was concerned that Gav's skull may had fused together too soon. When we arrived, I was just getting over a cold, so I still had a slight sniffle. Due to this, they sat us in a separate area and made me wear a mask. I understand the reason for it, but it is still uncomfortable when people look at you with fear in their eyes and pull their kids in closer to avoid you. You would have thought "Swine Flu" was written across my forehead. It turned out that Dr. Elmendorf was out sick anyhow, so we couldn't see him. The plastic surgeon was there, but he told the nurse that he couldn't see any detail in the x-ray and Gavin would need a CT scan done instead before he could be seen. So we left without seeing any doctors. Oh well.

Matt and Gavin kept themselves entertained while we waited to hear from the nurse

The long wait made Gavin tired and I saw this precious sight when we arrived home:

Gavin's CT scan is scheduled for October 26. I am not looking forward to it, since he cannot have anything to eat or drink after midnight and his appointment is at 7:30 a.m. Like his surgery day, I guess I will just have to either keep him up late or wake him at midnight to get a last feeding in. That day is going to be rough on all of us!

Craniofacial Team Appointment

Gavin spending time with his Daddy

We have been so busy lately that I haven't really had a chance to blog.  During the past two weeks, we had another appointment with Gavin's craniofacial team.  Grandma S went with us and snapped lots of pictures.

Gavin and Mommy waiting for the doctors

We met with the speech pathologist, developmental psychologists, pediatrician, and geneticists.  The speech pathologist said Gavin is doing great and she won't need to see him again until he is 9-12 months.

Gavin making a funny face with the Speech Pathologist, Heather

Next, we met with the developmental psychologists.  They held a ring up in front of him to see if he would follow it with his eyes and reach for it - which he did.  They also moved his legs around and tried to see if he would sit up on his own.  After the tests, they said that he was doing very well.  They suggested that I refrain from using a walker or bouncer with him, claiming that both of these hinder walking development and may cause him to walk on his toes.  However, I know that Matt and I were both put in bouncers as babies, and we both learned to walk just fine.  Therefore, I think using a bouncer is okay (in moderation, of course).  They also said that Gavin may need to practice more tummy-time, since he was not sitting up on his own yet.  Once again, I thought the advice was a bit odd, since he is only 4 months old.  Isn't sitting up a skill that is developed by about 6 months?  I figured he will sit up when he's ready.  He can sit up with support, but just not on his own yet.

Following the ring with his eyes

Sitting supported

Our third team member was the pediatrician, Dr. Elmendorf.  He said Gavin looked great and was healing very well.  Gav is now 23 1/2" long and 14.05 pounds.  The doctor said that means he's a bit on the short side, but average for weight.  So guess that would mean he's short and chubby!  Ha!  But with a 5'4" mom and a 5'10" dad, I didn't expect Gavin to be the next Luke Walton.  Also, with the recent events in my life and Gavin still adjusting to his new mouth, I was hoping to stay home to care for him for another month, rather than returning to work on August 1, like I was planning.  Dr. Elmendorf was fine with this and wrote me a note to return September 1.  I would love to stay home with Gavin until he is school age, but I know that's not realistic for us.

Our final team members for the day were the geneticists.  They explained that, due to mixed clefting in my family (Gavin with only the cleft lip and my mom and her sister with only the cleft palate), we have a higher chance of having another cleft baby.  Rather than 2-3% chance many other families have, we have a 5-6% chance.  The geneticists also explained that mixed clefting is generally a cause of van der Woude syndrome, most often characterized by lip pits or mounds on the lower lips.  However, no one in my family has or had lip pits or mounds, so we may not have van der Woude syndrome.  She said that we could run some genetic tests to check; however, knowing would not make a difference to us, so I turned down the offer.  She suggested that Gavin return for some testing when he is in his late teens to determine his chances of having a cleft baby.  So I guess I will leave that up to him when the time comes.

Gavin and Mommy with the geneticists

Overall, the appointment went great.  It was nice to have Grandma S there to help us.  I was glad to hear that Gavin was doing so well - although I knew that already!

3 Weeks Old

I had always been a girl who loves my sleep. Prior to being a mom, I would sleep in on weekends until just before noon at times! Well, being a mom certainly changes that! I found the new hours difficult to adjust to, and would try to sleep anytime Gav was sleeping. Although, most people considered me lucky since Gavin was only waking up once in the middle of the night to eat, usually around 3 a.m. However, I was still feeling sleep deprived and exhausted. I called my mom almost daily in tears and would ask for her advice. Being Gavin's mom is wonderful, but at the time I was feeling like I had lost myself. I was sleeping so much that I would stay in my pajama's all day and take my shower when Matt would get home from work. So I was feeling gross and tired most of the time. Finally, my mom gave me the best advice I could have gotten, which was to get my lazy butt up when Gav woke up for the day, take my shower, put on make-up and feel like a human being! LOL. That truly was the advice I needed. After that point, my whole attitude changed. I felt so much better after I started doing that! That's what moms are for! Here is a picture of Grandma C with Gav:

Gavin also got his first real bath. I prepared the water in the little basin they gave us from the hospital, but he didn't seem to enjoy it at all!

We also tried to have his infant photo shoot with my sis-in-law (the one who did our amazing maternity pics). Gavin was just waking up from a nap when she got there, so all he wanted to do was eat. Unfortunately, it was also one of those days when he was having trouble latching on, so we only got a few shots done, but they are so adorable:


At 3 1/2 weeks old, we had our first visit to Loma Linda Children's Hospital, where Gavin will have his surgery. During this visit, we also met a few members of Gavin's craniofacial team, which consists of about 8 different doctors and medical professionals who will meet with us regularly over the next few years. We met the pediatrician, speech pathologist, and geneticist. The pediatrician explained that generally, cleft lip repair requires 2-3 surgeries, which was not exactly what we wanted to hear. We didn't like the idea of putting our baby through even one surgery, but we knew it had to be done. But we were both happy with the pediatrician; he seems to be a kind and knowledgeable person.

The speech pathologist was also very wonderful, she gave us 2 different bottles to try at home, since Gavin will need to bottle feed when I return to work. I still plan on breastfeeding when I am home, but he will have to drink pumped breast milk while I am away. The bottles were the Pigeon, which has a very soft and thick nipple, and the Mead-Johnson, which has a long, thin nipple and a squeezable bottle. I was nervous about trying the bottles, considering all the difficulty we had getting Gav to latch on and wasn't quite sure I would try either one. But I knew eventually it would have to be done.

The geneticist asked us a series of questions to try to determine a possible reason for Gavin's cleft. When I told her that both my mom and aunt had cleft palates, she was surprised. Then she explained that cleft lips and cleft palates are two completely different abnormalities, so having a baby with a cleft lip, when cleft palates without the lip are in my family, is quite unusual. Therefore, she was unable to estimate our chances of having another baby with a cleft lip. This was interesting news, however, Matt and I agreed that it wouldn't make a difference to us whether or not our next baby would have a cleft as well. Gavin has brought us so much love and joy and his cleft is just a small hurdle for us to overcome. He has truly made our lives so much greater!