A Day at Cleft Clinic! - LONG

The title is just a "heads up" that this post is all about logistics and medical stuff related to Hannah's cleft palate. Possibly could be boring. But I know of at least a couple families who are in the process of adopting a child with a cleft palate who read this blog, so this post is mainly for y'all! Plus if it's written down and 2 months down the road I think "now what did they say about this?", I'll be able to go back and look. :-) Feel free to read it if you're interested and skip it if you're not. I'll post spring break happenings and pictures hopefully sometime this weekend.

Today was Hannah's appointment with the cleft clinic. It's been 6 months since we've been there for her post-op appointment and her surgeon (who heads the clinic) likes to see kids every 6 months until about age 5. At that time, he sees them once a year until they are young adults. Not sure what age is "young adult". I still think I'm a young adult at 33! ha! Hopefully she won't have to go that long though. I think he means like late teens. :-) He continues to see them because the face isn't fully grown until then and sometimes small revisions have to be done in those later years (mainly nose..sometimes lip).

Hannah's appointment today was at 9:00 a.m. Now, don't think that means at 9:00 she sees someone and then we're out of there by 9:30. Not that simple. Basically, all the babies and toddlers have 8:00 a.m. appointments (our first three visits were 8:00 appointments - July (initial), Sept (pre-op), and Oct. (post-op). But, now we've officially graduated to the preschool / young school age slots with a 9:00 appointment. Older school age and teens come at 10:00. It seemed to me like there were less kids today than our first 3 visits, so maybe choosing spring break week to be seen was a good move. I only counted about 6 kids in Hannah's time slot. But, then again it's hard to tell because the groups overlap. In other words the 8:00 kids are still there when the 9:00 group comes, and the 10:00 group is coming while the 9:00 is sitll there..so who knows. But anyway, my point is that it's a long morning no matter what age child and I was told from the beginning (and have found this to be true) to plan on at least 3 hours. The good side of it though is that you see all the various professionals involved in your child's care in one place in one day - so you don't cart them off to a bunch of different places on multiple days. And care is coordinated this way - everyone knows what everyone else is doing. That makes it all worth it. Plus, I think Dr. Grant who is the plastic surgeon is wonderful! He has a super success rate with the surgeries and is a genuinely nice person who makes parents and children both feel at-ease. And he answers questions and explains procedures well enough that the average non-medical person can understand (i.e. - me!)

So anyway, we arrived in the clinic at 8:30, signed in, and waited. Hannah mostly watched TV - Dora the Explorer was playing. Then we were called back to see audiology. They asked me some questions, looked in her ears and noted that her tubes (that were put in at the same time as her palate surgery in Sept) are blocked. They wanted to do a hearing test (because her last one showed just a very mild loss at 1 of the frequencies) but decided not to since the tubes were blocked and they wouldn't get an accurate result. Now, every other time we've been to clinic, an ENT was present. But, they actually didn't have an ENT today. So, they told me to call our ENT and make an appointment to be seen there and to have them follow up with an audiology appt. to retest her hearing once her tubes are clear.

Then, we went back to the waiting area to wait some more. Hannah watched more TV (Blues Clues was playing by then) and I took out a coloring book and crayons for her. Hannah made new friends with 2 other children by sharing pages out of her coloring book and her crayons with them. Then, we were called back again to see speech. This was our first time to spend any significant time with the speech therapists at clinic. When we came before, they talked with me but did not evaluate Hannah as they wanted her to have some time and heal from the surgery first. This time, I talked to the speech therapist some, and then they did an articulation test with Hannah. She cooperated very well and while she still has multiple speech errors, she has made good progress. Their reccomendation was to continue the therapy she currently receives at school and Univ. of Montevallo because it seems to be working. The sounds that have been targeted in therapy there are ones she did well on in the articulation test, so it seems it's time to introduce some new ones to foucs on. I did bring up my concern that she would have no speech this summer and we talked about some options. They have put us on the waiting list for services through Children's, but also gave me some additional places to call and follow-up on. If I can get her speech this summer, I think it will do a world of good. She's at an age and stage where she's so motivated, not yet self-conscious, and is making good progress. So, I just didn't want to discontinue that this summer. They agreed. So, I'll let y'all know what comes of that. I have some phone calls to make in the next few days. Another thing the speech pathologist did was place a little microphone under Hannah's nose that was connected to an earpiece. Then she listend to Hannah repeat words and phrases while she listened to hear if air was escaping out her nose. Children with cleft palates don't have that separation between mouth and nose that we have so they have air escape from their nose when they talk before surgery. Sometimes, they still do after surgery as well and may sound "nasal" when they talk. It *can* be a sign that the palate may not be working properly, may be too short, or may have a fistula (small hole). Anyway, I was told that she could not hear air escaping form Hannah's nose when she made /p/ and /b/ sounds, but it did seem there was a little when she made /s/ sounds. That makes perfect sense because Hannah still has a small hole behind her gumline (on purpose - it will be repaired with the gumline repair later on) which is where air is focused on the /s/ sound. This was a very subjective measure - not really that "scientific", but it does give them an idea. What they like to do is a better test where the child wears a helmet that has a nose probe-like thing (it just goes barely inside) and the child repeats sentences and it measures exactly how much air is escaping. But, they told us Hannah was still a little young and didn't quite have the skills for that (repeating the sentences relatively clearly) so they wanted to wait and try that next time we came. Which was fine with me. I'm happy to have them do the test next time to really see what's happening, but my non-medical opinion is that their informal assessment is probably right-on. So, after Hannah charmed them so they would give her a sticker, they sent us back to the waiting area.



More coloring, more TV, 2 new friends to share the crayons with, and a snack occured. Oh, and there was the entertainment of watching one boy jump in a wagon being pulled by another boy (both about 3-4 years old). They didn't know each other but the one pulling headed down the hall and the two parents smiled, glad to have a relief from entertaining them for a moment. And then, they both called down the hall "turn around and come back now". No one came back, the kids turned the corner...they were escaping! ha! One dad and one older sister ran to catch them. Hannah laughed loud and long over this one! Comic relief I guess.



Then, we were called back to the main exam areas. Height, weight, and head circumference were done and we were shown to our room. The nice assistant who did all her measurements brought Hannah a pack of colored bracelets. She likes to give out little gifts to all the kids waiting. Now, with more waiting to do without the benefit of other children or a TV, I dug out the 5 books I had brought. I'm so thankful Hannah likes books. We read all 5 of them, then took a field trip to the bathroom. We came back and made patterns out of all the different colored bracelets Hannah had. Then, I dug out the paper and pencil for Hannah to draw. Then, I dug out a 2nd snack (really more of the first - cheese crackers) and an apple juice. Hannah had just put her 2nd cracker in her mouth, when Dr. Grant came into see us. Hmm - cheesy mouth and teeth just in time for the surgeon to look in her mouth!! Oh well, he was nice about it and besides, he did her surgery so has seen her mouth worse! Dr. Grant waited for her to wash the crackers down with apple juice, and commented how glad he was to see her sucking so well from the straw. He was also glad to hear she could very easily blow bubbles now. He looked in her mouth and asked her to 'pant like a dog'. Hannah thought that was very funny. He smiled and with what seemed genuine enthusiasm exclaimed "perfect! Her palate is moving just perfectly!". He said everything looked great! We talked about her speech a little and I commented that at this point, it seems to me like more of a true articulation issue in the sense that Hannah is physically able to make the sounds, but is still learning how to (where to put her tongue, which sounds use her teeth, etc.) and relearning bad habits formed before the repair. He agreed, which is great news...those are things speech therapy can fix. Therapy can not fix problems that stem from a palate problem - those have to fixed through additional surgery. At this point, we are not looking at any additional surgeries to fix her palate (other than the gumline repair). There are other additional surgeries in Hannah's future however, which we talked about some. Next step is a lip and nose revision. He went over that with me and what to expect. Initial recovery is easy compared to palate repair recovery he said. He said one day in the hospital and there is very little pain and in fact they typically don't prescribe pain medicine but instead suggest tylenol or motrin for any discomfort. He said they hide most of the stitches under the skin so kids won't pick at them, but there are a few visible ones. (I don't quite understand how they hide stitches under the skin...but that's what he said). They will disolve and it's okay to get them wet. No eating or drinking restrictions either (Those who have followed for a while may remember after her palate repair Hannah was on a soft foods diet for a month.) He said the scar however takes about a year to see the true results. It will look like it is "pulling up" at first, but it is just temporary and after a year, we should see the true results. There is no rush for this surgery, but he likes to do it before children are school age and start noticing differences. Now this may sound strange, but I almost can't imagine Hannah without her nose looking crooked. I think it's adorable and it's *her*. A very small part of me doesn't want to "fix" something that I think is perfect just like it is. But, we will because at some point Hannah will care. At this point, we are looking at doing the surgery early in the summer of 2008 which is just before she goes to kindergarten. That also will have the advantage most likely of having that surgery done before I welcome home daughter #2. At out next appointment at the clinic in 6 months, we will go ahead and schedule it because it will require pre-approval from insurance and Dr. Grant said that would get us plenty of time to get it approved and appeal the decision if it's not. Because it's not a "functional" surgery, insurance doesn't automatically cover it like the palate surgery, but he said he's never had any problem getting it covered. I did ask if that surgery would help with breathing through her nose. I had been thinking that when she got a cold (which is thankfully not often - she's been an amazingly healthy child to have gone through such transitions!), her nose seemed more stopped up than the average person. That didn't make sense logically to me - a stopped up nose is a stopped up nose. I can't explain it, but I just had that impression though that hers was a little different. Well, turns out I'm not crazy. No, the lip and nose revision won't help that because Dr. Grant said the problem is not in the front of the nose (which is where the revision will be), but in the back of the nose. She apparently still has a separated septem in the back of her nose. I had no idea and had never heard of that before. But, he said (and my explanation won't be as good as his and won't make sense) that when she had a little cold, her nose got stopped up on both sides quicker because there wasn't that division between them and something about the pressure... That will likely be repaired MUCH later (that's one of those teenage revisions that can happen). He said current research is not to touch the septum until the nose stops growing (teens). He also said in a couple cases he's had to go ahead and do it due to other issues those particular patients had and it's worked out okay so far so he didn't believe that research was totally accurate. But, without a true medical necessity to do it early, it should wait until Hannah is a teenager. So, that was it. We made our next appointment, checked out, and left. When I got in my car it was 11:40 a.m. Yep - 3 hours there. Only 2 hours and 40 minutes if you don't count the time we were there early. Our quickest one yet! I hadn't even pulled out the last two "tricks" (toys) out of my bag yet!



So, here's the bottom line current plan (always subjet to change!)

1.Next week - we go see the ENT about the tubes and see what he can do. Then we reschedule audiology exam (which we can do at Children's South - it's the same people. So that will be convenient. If the ENT can clear her tubes that day, we might can even just head straight to audiology and do that then. It's the same building.) In the mean time, I'm putting drops of vinegar in her ears twice a day (their instructions - I didn't make this up!) which they said *might* unclog the tubes after a few days. When I tried it tonight, it didn't seem to bother Hannah at all...so that's a good thing.

2. Try to set up speech services for the summer

3. October 2007 - 6 month follow-up at the Cleft Clinic, schedule lip / nose revision surgery

4. Summer 2008 - lip / nose revision and I'm assuming a post-op visit to the cleft clinic

5. ??? At out next visit after the revision, we'll see the regular people plus an oral surgeon. We'll have x-rays done to see where Hannah's permanent teeth are (she'll be 5 by then) and to predict when they are likely to start coming in. The oral surgeon and Dr. Grant together will decide when to do the gumline repair. They want to do it before any permanent teeth come in.

It involves a bone graft to that site. Bone is needed there where the cleft is to support the teeth as they come in. Depending on what the x-rays show, this is done between the ages of 6-7 usually.



After that - yearly visits to the clinic, very likely orthodontics at some point, probably a later surgery on the nose (since I now know the back is still separated), maybe a later lip revision, but maybe not. That's all I know for now!! Whew - if you read all that, you're either very interested in the medical issues of cleft palate OR you have nothing better to do!! It seems like a lot, but taken step by step, it's really not. And the word from both Dr. Grant AND those who have gone before me with older children is that the hardest parts are behind us already! If you're adopting a child with a cleft palate or considering it, please don't let all this scare you. It's NOT true what some say "just one little surgery and it can all be fixed". I did know that already though...I had researched enough that none of this has really come as a suprise. In fact, it's actually a bit less than I thought it could have been. As true as it is that management of a cleft palate is more than 'one little surgery', it's equally true that it IS definately manageable. Our day-to-day life is NOT about cleft palates. It's about bubbles and swings and preschool, and laughing, and not wanting to go to bed, and testing limits, and playing at the park and sweet hugs and kisses goodnight, and a million other things that make up life. Most days, I never even think about Hannah's cleft palate. I mean it's always there - and I do think about it and talk about it when it's relevant (such as in talking with speech therapist, or when we go to the dentist and I remind them that she still has a hole in the gum so if they're not careful brushing her teeth and they hit it at just the right spot, they'll see toothpaste come out her nose!). But, it's just not normally a focus of our life. But, today it was a focus due to our appointment, so I thought I'd write about it 1. so I'd get the details straight and 2. so someone else about to go through the same things could hear one person's experience, knowing that your child's experience will have some similarities but also some differeneces I'm sure.



Anyway, here's a photo of Hannah in the exam room. I do have to say she did GREAT! It's amazing the difference in 6 months. She mostly entertained herself and I even relaxed and read a magazine. She understood my explanations of what was going to happen so wasn't near as nervous as previous visits. Nothing done in a regular clinic visit hurts..and I could tell Hannah that and trust that she understood and mostly at least believed me. We had no tears, willing cooperation to every task that was asked of her, and a generally relaxed attitude. Towards the end, she got restless, but never got "wild". For her, "wild" can be a sign of being nervous or anxious. She did fine at the first few visits, but I worked hard at entertaining her and helping her be fine. This time, I just provided a few things to keep her busy (and snacks to keep her from being hungry), but that's all I really had to do. I can't believe I'm saying this, but spending 3 hours in a dr. office was *almost* a pleasant experience! :-) But tomorrow, we're switching gears and heading to the zoo!