Fistula Repair and P-Flap 6-Month Post-Op

Matteo had his six-month post-op visit to check up his recovery from his fistula repair and p-flap surgery back in February. Despite how well his mouth has recovered, he did develop a fistula, or in layman's terms, he developed a hole. The hole appears small, but the surgeon can't tell how deep it goes. The good news is that the surgery appears to have been a success given that the fistula is not impacting Matteo's speech and his p-flap closes off properly to prevent air from going through his nose, which gives him the ability to pronounce a broader range of sounds. At this time, we don't think he'll need another surgery to do a revision to the p-flap, which means his next surgery won't be until he's somewhere between seven and 11 years old when he'll have a bone graft.

The bad news is that despite Matteo's incredible work ethic during speech therapy, his repaired and lengthened palate, his age (he's turning four soon) and being home for a year and a half now, his speech is still nearly impossible to understand. And when I say impossible, I mean that I as his mom have extreme difficulty in figuring out what he's saying. It's heart-breaking to hear him repeat a word over and over again with such persistence and helplessly can't understand him.  

The doctors told me what I already know, that he has a severe articulation disorder. Of the 44 phonemes (the smallest units of sound that distinguish one word from another) in American English, Matteo can only pronounce nine according to his speech therapist's evaluation. His speech includes multiple phonological errors, such as phoneme omissions ("poon" for "spoon"), syllable reduction ("jamas" instead of "pajamas") and difficulty sequencing phonemes in single words. Just like Kiera, Matteo doesn't readily initiate verbally and communicates in one- to three-word phrases at most. 

Aside from identifying that Matteo has a "severe articulation disorder", they can't do further testing on his expressive language skills due to how unintelligible his speech is. So we must plug away at speech therapy and wait until he develops more intelligible speech to be able to identify a more exact speech disorder. 

Matteo is so smart and inquisitive and like his sister, I'm curious what he's thinking and wish he were able to tell me.

Speech Consultation at the Mayo

When Chris heard I was bringing Kiera to the Mayo Clinic for a speech consultation, he joked with me that I was "bringing out the big guns."  I sure was.  I was tired of hearing people tell me that Kiera just needs time to adjust and that she's still learning English. She's been home for a year and turns four in March.  She starts kindergarten in a year and a half and can't communicate with more than one word, if she initiates speech at all.  I'm too impatient for a "wait and see" approach and have grown increasingly frustrated with her lack of progress despite the intensive speech therapy she's undertaken since July. 

Our consult at the Mayo Clinic was with Dr. Ruth Stoeckel, an expert in speech and language disorders.  This is the speech language pathologist recommended by my Facebook group for parents of children adopted from China who have speech and language delays. When I had no idea what to do next, this group offered their support and ideas. 

As expected, it took Kiera some time to warm up, so she wouldn't make a peep as Dr. Stoeckel tried to engage her.  She wouldn't even tell the doctor her name. As we know, Kiera responds to movement and once Dr. Stoeckel got her interested in a Nerf gun and was suddenly incredibly LOUD as she chased after the Nerf pellets. 

Dr. Stoeckel tested Kiera's receptive language first.  For conversational receptive language (tested using questions about the child, like asking how she's doing, what her name is, how many brothers and sisters she has, etc.) Kiera tested in the three-to-four-year-old range.  For academic receptive language, (tested by having her answer questions about a picture, such as asking where certain objects are located in a picture or what she sees) she tested on the level of a three-year-old.  Academic receptive language is considered harder and it's not surprising when kids score lower.  Overall, Dr. Stoeckel has no receptive language concerns and this is in line with what the school district found when they tested her in the early fall.

Dr. Stoeckel's speech evaluation revealed that Kiera can say a lot of words, but with a lot of errors. With the multiple speech issues the doctor pointed out, it now makes sense that Kiera's speech is so unintelligible. 

• Final consonant omissions - We're all familiar with how Kiera does not say the final letter in a word. "Hat" is "Haaa."
• Vowel distortions - She might pronounce the word "book bag" like "bay bye". We have a lot of vowel sounds in the English language (16?) and Kiera distorts a fair number of these.
• Fronting - She replaces certain sounds with other sounds, such as saying "tar" instead of "car."
• Cluster reduction - This is where she reduces consonants in a longer word or drops letters to make a word shorter or easier to say, such as saying "boon" instead of "spoon." I was told this is not unusual for this age and stage of English acquisition. 
• Glottal stop - not sure how to explain this one...

Sometimes two, or even three, of these speech issues are present in one word, which is why it's difficult to understand Kiera.  When she says "tating" instead of "skating," she's exhibiting cluster reduction by dropping the "s" and fronting by using a "t" sound instead of a "k".  "Stop" becomes "ta". Again, there's cluster reduction with the dropping of the "s", but also final consonant omission by not pronouncing the "p".

Dr. Stoeckel diagnosed Kiera with having a "speech sound disorder" and "delayed expressive language skills secondary to the speech sound disorder."  She didn't identify any obvious language disorder at this time, but said that could change as she gets older and she talks more and they can better diagnose her. 

Kiera has motor planning problems, which means it's harder for her to sequence longer words or phrases. This might explain why Kiera really doesn't talk with more than one word at a time and that her few two-word phrases are not more than two or three syllables in total.  (For example, she yells, "Do it!" if she wants to do something for herself, like get herself dressed instead of letting me help her.)  Or when you ask her to say a word with three or more syllables, she gets lost before she finishes saying the word. If you've noticed, typical of a kid Kiera's age, she "asks" a lot of questions.  For Kiera, that means every movement you make prompts her to ask, "Doing?"  Saying an entire sentence of "What are you doing?" is too much to sequence.  Plus, she's probably figured out that we know what she's asking simply by using the one word. 

Motor planning might also explain why she has trouble answering questions, like what she wants for lunch or even her own name. Kiera most likely knows what she wants, but something as easy as saying, "I would like a peanut butter and jelly sandwich" or  even, "peanut butter and jelly" is a lot for her brain to sequence and communicate with her mouth to say. While we may never know what other factors play into her inability to answer questions or initiate speech, she could be aware of the errors she makes and be self-conscious, or she could have adapted to her speech limitations and makes do with pointing or not getting what she wants. 

I had originally thought could possibly have Childhood Apraxia of Speech (Apraxia), and even the neurologist at the Mayo who reviewed the videos I had taken of Kiera speaking, thought that could be the case, but Dr. Stoeckel, an expert in Apraxia, says she doesn't have it.  However, the "motor planing with vowel movement" that Kiera presents is present in all kids with Apraxia. A small number of kids have motor planing issues, but not Apraxia, and Kiera fits in this category. The main clue that Kiera does not have Apraxia is that there is often consistency with her errors and when she has someone guide her through the word, she can often say it correctly by the third try.  (That is, if she's in the mood!) Kids with Apraxia will say the same word three different ways and not get it right.  There's no pattern to their errors.

Here are two resources that talk more about motor planning. They are specific to Apraxia, but the information is still relevant to Kiera. 

• http://www.apraxia-kids.org/library/what-is-the-difference-between-speech-motor-planning-programming-and-execution/
• http://www.tayloredmktg.com/dyspraxia/das.shtml
  

I was relieved to learn more about Kiera's speech needs, but I was also desperate to learn what the next steps should be in speech therapy. Most traditional speech therapy (sometimes called articulation or phonological) therapy doesn't focus on vowels and this is the area Dr. Stoeckel is most concerned about because they're the hardest to fix. She recommends motor planning therapy because it will improve communication efficiency.  This type of therapy is sometimes referred to as a "core vocabulary" approach.  Core vocabulary therapy focuses on teaching kids usable phrases instead of trying to learn how to pronounce individual sounds. She recommended a program called P.R.O.M.P.T.

Dr. Stoeckel recommended some speech pathologists at Children's Hospital of Minnesota, but unfortunately, we couldn't get Kiera on any of their schedules.  Since we haven't been happy with her progress at Gillette's, we'll still give Children's a try with a different speech pathologist.  Our first appointment is in mid-March.

Both Kiera and Matteo have been receiving speech services through the school district twice a week.  The wonderful part is that these services are free and the speech pathologist comes to our home. Their speech pathologist is familiar with Core Language Therapy and did some extra research to come up with a new game plan for Kiera.  Our goal now is to work with Kiera on familiar words that she needs to communicate.  We'll work on up to 10 each week. The task is to twice a day have Kiera practice pronouncing each word five times.  The idea isn't to quiz Kiera on what the picture is, because she most likely knows that, but to provide an example of how to say the word and then get her to repeat it. Because of her motor planning issues, Kiera might not be able to produce the word correctly on her own without watching and hearing someone say the word, which is why much of our "quizzing" her on names of objects has been mostly fruitless and frustrating for both us and Kiera.  The hope is that practice will increase brain "muscle memory" so that words her brain has struggled to communicate to her mouth to speak, or speak correctly, will become second-nature.

Because there's an emotional/psychological component to Kiera not being able to/wanting to speak, the speech pathologist also suggested we create a sticker chart and make a big deal out of Kiera using words to communicate her wants or needs, similar to what we did with Oliver and Soren during toilet-training.


I'm looking forward to a new chapter in Kiera's speech therapy, but I'm also overwhelmed because even under the best of circumstances with a proper diagnosis and skilled speech pathologists providing the correct kind of therapy, we still have a long road ahead of us and a lot work to do. 

Fistula Repair and P-Flap Post-Op

Matteo's recovery from his fistula repair and P-flap surgery has gone so much better than last year and his surgeon confirmed that when we went in for his post-op appointment. His mouth is still healing, but that's to be expected, and why the poor guy has another week and a half of a liquid and then soft foods diet.  But so far the fistula repair is still intact, which is really a miracle, because his surgeon said nearly all children with a bilateral cleft palate (especially to the degree Matteo's was) end up with at least a small fistula. There's still a possibility for that, but with each passing day, I feel more and more confident that we won't see the repair completely fail. The doctor isn't worried about a hole the size of a pencil eraser or smaller, especially if his speech isn't affected and food doesn't come out his nose.

After the doctor's visual inspection of Matteo's mouth and my report that he's snoring loudly, his surgeon thinks the P-flap is healing and doing what it's supposed to do.  Unfortunately, snoring is a side affect of the surgery because when the lengthened the palate, his throat can now be blocked off, which will help him make sounds that would be otherwise inhibited if air could escape.  The snoring will lessen in the coming weeks and months, but sadly for his future partner, won't completely disappear.  His surgeon, who's getting close to retirement and has been married many, many years, gave Matteo a fist bump and assured him that he's done just fine and his wife hasn't kicked him out yet.  Matteo of course had no idea what the joke was about, but flashed the surgeon his beautiful smile for good measure.

We won't know how much the P-flap surgery will impact Matteo's speech until he's completed another six months of speech therapy.  We'll be back in August for the six-month post-op visit and will also meet with his speech therapist at that time.  About 15% of children who've had a P-flap surgery need a revision.  Thankfully, that's an out-patient procedure with minimal pain and "only" five days of a liquid diet.  So a walk in the park for a brave little boy like Matteo.

I'm still in disbelief by how well Matteo's recovery has gone.  I really had prepared for the worst.  However, in the hospital, the surgeon told me that for some kids, this type of surgery ends up not being a big deal.  I can't believe Matteo ended up in the "1 in 10."  We have the advantage that he didn't end up with a double ear infection and stitches that ripped apart, both of which only added to his misery. 

Post-Surgery Recovery

Matteo's post-surgery recovery is going a lot better than this point last year.  Of course having this extra year together has helped, both in attachment and Matteo being a year older and able to understand that much more.  But I give a lot of credit to Matteo himself.  This kid is such a trooper!

Matteo was seemingly back to his usual self when I arrived back at the hospital the morning after his surgery.  He was sitting in bed watching a movie and although Chris hadn't been able to get him to eat more than a few small bites of ice cream, he had been drinking plenty and his pain seemed under control.  Chris went to work and Matteo and I hung out the rest of the morning and into the afternoon.  We received visits from various health care providers, played a matching game, put stickers in the sticker book Grandma had brought him and then cruised through the hospital in a wagon.  It was a lazy and quiet day at the hospital for us.

The only time Matteo appeared in pain is when I cajoled him into eating a few bites of his lunch.  Granted, he was eating pureed chicken mixed with gravy, so that there might have been the root of his discomfort, but I knew the nurses weren't going to discharge him if he didn't get some "solid" food into his stomach.  I otherwise wasn't concerned by what he was or wasn't eating because he had practically chugged two bottles of PediaSure and Carnation Instant Breakfast in one sitting and was willingly drinking plenty of water. He had already defied the surgeon's prediction that he was going to barely drink anything for five days following the surgery due to his throat, so I considered Matteo to be ahead of the game.

Into his second full day of recovery, Matteo continued to only want to drink Carnation Instant Breakfast, but I made it with whole milk and added some of the protein powder Marcel had left behind in an attempt to get as many calories and as much protein into his body to fill his tummy and heal his mouth. I got him to eat a fruit puree pouch and then a bowl of chocolate ice cream for dinner, but if he otherwise just wants to drink Carnation Instant Breakfast for the next two weeks, I'm fine with that if it means we get him through the liquid diet.

Overall, I can't believe how much better this surgery has been compared with last year's surgery and compared with what I had prepared myself for.  I brought Matteo into work this afternoon to visit my co-workers, some of his biggest fans, and no one could believe what a good mood he was in.  He was hamming it up for everyone, playing peekaboo from behind the cubicle partitions and basically acting like a typical three-year-old kid who had NOT just had surgery 48 hours prior.

As thankful as I am for his easy recovery, we're definitely not out of the woods.  I'm still very nervous that his palate could suddenly fall apart.  A small opening the size of a pencil eraser or smaller wouldn't be concerning and "shouldn't" affect his speech, but anything bigger than that is something they want to keep trying to repair.  My question was how.  They could do another fistula repair, which would be possibly an out-patient procedure, but would require the same liquid diet during recovery, or they could do a procedure where they take skin from the inside of his cheek and "fill in" the hole.  I know I shouldn't be focused on the options for another repair since it hasn't come to that yet, but it does make me feel a little better knowing that there are options.

Thankfully the p-flap procedure, which extended his palate and will do the most to improve his speech, has a high success rate and the doctor isn't worried about that coming apart.  There is the possibility that the surgeon will need to "tweak" the p-flap at some point in the next year if the desired speech results aren't achieved, but that's at least an out-patient procedure and less painful of a recovery.

In addition to Matteo's physical recovery, a lot of speech therapy stands ahead of him as he learns to retrain his muscles to make all the sounds that have been impossible for him until now.  Even though Matteo had not made much progress in speech therapy prior to his most recent surgery, I took comfort in hearing his speech therapist tell me that all the hours of therapy was time well spent because he was learning proper placement of sounds, even if he couldn't actually master those sounds. He has the practice in place so that once the surgery is completed, he has the potential to make more rapid progress than if he had done no speech therapy prior to his surgery. 


While hearing all this from Matteo's speech therapist was promising, a lot of unknowns still remain about how much progress he will actually make and in what time period.  My biggest concern is that Matteo's speech may be affected by more than just his cleft palate.  My gut has been telling me lately that there's maybe more going on and Matteo's speech therapist admitted the same hunch to me.  She had never mentioned anything until now because a speech disorder is too difficult to properly diagnose in a child who doesn't have much discernible speech. It's an observation she had tucked away and will wait to look into more a few months post-surgery. 

Chris does not believe anything beyond a cleft palate is affecting Matteo's speech and predicts that by his fourth birthday we'll have trouble keeping him quiet.  Let's hope he's right about that!