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HULLABALeLe

02/23/09

So, we've had quite a roller coaster ride these last couple months. Back in December we hooked up with the Communication Disorders Clinic in Orlando and a surgeon (a dentist who went back to get his MD so he could specialize in the mouth area). It was determined that Lena had paralyzed anterior/posterior sections of the VeloPharynx, but that there was some lateral wall movement. It was also determined that the paralysis is the primary cause of the hypernasality, and the surgeon felt that by opening up the palate repair, doing a P-flap, and then reclosing the palate, that he could help significantly. Prior to surgery, we needed lots more testing. A sleep study was done and determined only minor sleep apnea (the p-flap can exacerbate sleep apnea, so they just needed to be able to better weigh the risks/benefits). Then we saw a new craniofacial team and yet another ENT. This ENT's audiologist documented a (SURPRISING) progressive sensori-neural loss (in addition to the conductive hearing loss we've known about all along). Ugh! Not good news at all.

The speech person wanted to get a videofluoroscopy prior to surgery, so last week... just a few days before surgery... we went for that test. What was found was that in addition to the anterior/posterior walls being paralyzed, the lateral walls only seem to have "up to 20% movement", which , even with a P-flap would not allow for closure. SO, after two months of hopefullness for Lena's future speech, we were told that the big palate/P-flap surgery would not be done. They recommended we continue with the Communication Disorder Clinic team to learn ways to teach Lena compensatory mechanisms for approximating more normal speech sounds. They also recommended that we "up" the sign language usage and use "total communication" techniques with Lena (ASL, auditory/oral, lip-reading, etc.)

Lena still had some minor things done yesterday under anaesthesia. She had a new (butterfly) PE tube placed in her right ear. She also had an ABR (special 1+hour hearing test while "out"). The news from this is as follows: Good news is they did NOT document the sensori-neural component that the new ENT's office found! Yay! More good news is that with the new PE tube and the bone conduction aid, Lena can again hear in the "normal range" from the right ear. With the PE tube in and without the aid on, she's back to the "moderate" loss range (up from profoundly deaf without the tube). And the bad news is that they are still unable to determine whether or not Lena has a functioning cochlea on the left. Due to the increase in intelligibility of Lena's speech, we will certainly continue using the bone aid, although there is definitely lots of controversy in the medical community about the use of an aid in a child with at least one ear that hears in the mild/moderate range.

Also, while "under" the surgeon and ENT did a lot of poking around in there to get a better feel for Lena's anatomy. They both felt that her adenoids/tonsils are massive and wonder whether or not the sheer size of them could be interfering with the movement of the VP. So, they're going to have the radiologist review the videofluoroscopy to look specifically at this area to see if he agrees. If so, they'll go in and "shave" all the bulk off the tonsils/adenoids (can't remove them in cleft kids). At the very least, this should improve her snoring/sleep apnea problems; best case scenario would be to see improved movement of the VP.

Arnold Palmer was great about getting us in and out this time. We were first on the docket, arriving at the hospital before 5:30am; surgery was at 7:30 and done at 9:30; we were walking out the door at 10:00 (well, *I* was walking, carrying Lena, who was loopy and couldn't stand up by herself whole rest of the day/evening).

Other than medical issues, no complaints. Lena is doing well. Thanks for stopping by.

01/11/09

Well, Thanksgiving, Christmas, and New Years have come and gone. Since Zoe wrote about these on her page, I'll skip it here. Hope you all had a safe and lovely holiday season.

Lena is doing fabulously. She still loves school, her teachers, and friends. She never misses an opportunity to tell everyone about her "new" (now 6 months old) hearing aids and whether or not Miss Kim and Mrs. Parker were at school today. She tells some "mean" jokes.... Her favorite is, "Point to your head. What's the abbreviation for 'Mount' or 'Mountain'?. M-T. Empty, get it?! <giggle, giggle, giggle>" She still loves puzzles and has 'graduated' to 48+ pieces. She is sounding out words in "Bob Books".

We met with the Communication Disorders Clinic and after all sorts of neat tests (video swallow study; helmet-type device to measure nasal emissions when speaking; speech graphing computer program) it was discovered that the reason for Lena's extreme hypernasality is that the front and back walls of her nasopharynx are paralyzed, leaving only the lateral walls to move to try to close off airflow. Also, it was discovered that she still has a fistula (which explains why she still has some liquid-managing issues). The surgery to repair the first problem is commonly referred to as a "flap", where they go in and build a 'bridge' of tissue to connect the front and back, thereby allowing the moving lateral walls to reach far enough to (hopefully) close off the airway for non-nasal speech. The problem with this surgery is that it oftentimes exacerbates or causes sleep apnea. Lena snores a lot, so she had a sleep study this past week. We should get word this coming week on the results. If she is not a candidate for this surgery due to apnea, then the surgeon said he'd have to put his head together with other surgeons to try to come up with a solution, as Lena is not a candidate for the other two surgeries that are routinely performed to fix hypernasality. While they're doing the flap they can also repair the fistula. This will be another pretty major surgery, similar to the first one she had last year in complexity and recovery (weeks of wearing "no-nos" so she can't put her hands near her mouth; 6 weeks of soft baby foods; pain meds, antibiotics, etc.).

The new surgeon we're using is actually a DMD who went back for his MD, so he specializes in this area alone (as opposed to the plastics guy who did the first surgery). He explained the whole jaw-lengthening thing to me as well. He said that the "barbaric" jaw-lengthening that they use on many kids is not appropriate for Lena's case, as she needs extension on a 3-D plain, rather than in only a straight line. He said that the surgery he'll do on her jaw will be only ONE surgery and will have to wait until she is about done growing (around age 13, after menses). He also said that in the last 11 years of him performing this type of surgery, he's only ever had to wire one jaw shut (as opposed to the more barbaric other jaw-lengthening procedure that always have their jaws wired). Of the different types of Goldenhar jaw issues, he said Lena's is right in the middle... less severe that a jaw missing bone parts, but more severe than the minor issues seen with many cases of Goldenhar.

He totally recommended against any temporal bone-anchored devices at this age (BAHA hearing aid, ear prosthetics, and even "knobs" for anchoring eyeglasses). The bone is just too fragile and more often that not the devices just break out. He recommended waiting until she is older and the bone has ossified more. Soooo, Lena is back to contact lenses for now.


10/25/08

HAPPY 4th BIRTHDAY LENA!

What a blast we had at Lena's "music party". She danced, sang, and kept telling everyone how excited she was. I love this age so much, especially that she's so absolutely thrilled with and thankful for each and every little aspect...from the cake, to the decorations, to the gifts.

A funny: We usually let the birthday child pick where we eat out on the big day. So I asked Lena. Her answer, "TABLE"! <I swear she knew she was being funny because she laughed right away!>

Lena is one cool kid. She loves music, puzzles, coloring, "reading" to us (never forgetting to make sure she shows us the pictures), and painting. She is just beginning to sound out words (well, she can sound them out, but doesn't recognize the word she's just read over and over, faster and faster; it will come, though). She is learning to play the piano. She takes gymnastics, too. She tries her hardest to keep up with her sisters. She loves her brother, holding his hand in the car. She has the best manners, always the first (and I mean that) to say, "Thank you for <whatever>, Mommy". She says Grace, having moved now from her simpler "Dear God, thank you for this food. Amen" to including everyone (and I mean EVERYONE) she is thankful for, even moving on to inanimate objects now <haha>). She laughs and giggles and gets goofy with her siblings and she bickers with them, too. She loves her daddy oodles, but she is still a mama's girl. It won't be too much longer before she, too, goes over to the dark side (reveling more in her daddy's attention than mine)...so I'm really relishing the attention from her. She is such a big helper, and has an incredible memory (like for what she needs to pack for the car ride; what she needs to do in the morning to get ready for her day; what she did at school that day). She is a tad bossy, which the girls don't like...but hey, sometimes they need bossin'!

I feel really blessed and am constantly amazed that I was chosen to be this little angel's mommy.

Birthday-muffin-in-bed

Thanks for checking in. ~Karen

10/14/08

Wow! I can't believe 3 months have gone by since my last update. Time is really flying! Where to start... OK, we finally got the IEP meeting scheduled and everything we asked for was granted (increased time with speech/language and with deaf/HOH itinerant teachers). Lena now gets 4 days deaf/HOH, 3 days speech/language, and 1 day still of vision services. I also talked to the (public school) "Auditory/Oral" program folks and I visited the "Deaf/HOH classroom" (which, by the way, has NO deaf/HOH kids!). Neither program will work for us, and that's ALL that's offered in this county. I'm leaning towards keeping her in her present school (private preschool with a sign language teacher working with her daily) again next year. In the meantime, we have an appointment in 3 days to visit UCF's Communication Disorders Clinic. Hopefully we'll get some answers and some insight about Lena's speech issues. And hopefully, with the rest of this year plus all of next year to improve her speech, she'll be ready to join her siblings in their school her Kindergarten year.

The biggest news is that Lena is now aided with a bone conduction hearing aid! After being repeatedly told by her ENT that Lena is profoundly deaf on the left (and moderately on the right before PE tube; low normal after PE tube placement), with no chance of ever hearing on the left due to malformed/missing parts, we finally saw a new specialty guy. He's an otoneurosurgeon. With our on-going complaints about Lena's unintelligible speech, this specialist asked why she's not wearing a hearing aid for her right side. We explained that while 2 other facilities recommended she be aided a year ago, when we were referred to his practice (same company the ENT is with), the ENT would not aid her, saying that with the improved hearing in her right there was no benefit in aiding. The otoneuro guy disagrees. He recommended a bone conduction aid for the right. He said, "Will it fix her speech problems altogether? No. Will it help? Absolutely!". He then asked the status of the left side. We told him what we'd been told. He asked if she had ever actually been tested on the left. No, she had never been old enough (read "old enough to be cooperative enough"). He had her tested that day. NEWS FLASH: With a bone aid in the sound booth Lena tested in the low normal range on her left ear, too! I actually cried with this news :) Sooo, Lena is now aided.

The way bone conduction aids work is this: there is a microphone piece (like on more typical in-the-ear air conduction aids), but hers is connected by wire to a bone oscillator. The microphone piece is placed on the left side of her head (this might give her the sense of better sound localization...or it might not...), while the oscillator is placed against the bone behind her right ear. The vibrations from the sound being transmitted through the oscillator "conduct" through the bones of the skull and are interpreted by the brain as sound. It's amazing. She literally walked around that first week asking "What's that?! What's that?!" to all the new sounds (like the doorbell and telephone ringing). This has opened up a whole new world for her.

We've also been blessed by some extremely generous folks who donated aids for Lena (our health insurance won't touch it). The first was from another FA family who lost their precious angel, Carrie, 9 years ago but still had her bone conduction aid. After spending some time in the shop, this analog aid was returned to us in perfect working condition WITH a 1 year warranty even :). Lena LOVES this aid. It's on a metal headband, though, which competes with the straps for her glasses, and causes hematomas on her scalp. (See below for discussion about glasses.) So she really can only wear this one when she's not wearing glasses...like in the morning before we get her glasses hooked up, and in the evenings after she showers. The great thing is that she can put this on and take it off by herself quickly and easily. Being the independent little gal that she is, this works out great for everyone :)

This is the metal headband, with attached oscillator on the left, and microphone on the right (embedded in a wax piece to make it more comfortable to wear). We wrap ribbon around the headband (like the pink one above that it came wrapped in from the donors) and it ends up looking more like a store-bought decorative headband.

Thank you Beth and Jeff (and Angel Carrie)!

Within days of receiving this aid back from the shop, we also received one from the Lions Club. This one is a brand new digital aid without a metal headband. It is simply attached to a store-bought fabric headband by little rounds of velcro, and then snuggled up under the headband to provide the pressure needed for the oscillator to do its job (thanks to Teresa, another FA mom, for her instructions in this method). I bought some "alligator clips" (some of you...and I'm not naming names... might remember these as "roach clips") from the jewelry section of a craft store to fashion a strap to attach the aid to Lena's clothing to prevent it from hitting the ground, as the headbands tend to work their way off her little head several times a day. This has not entirely eliminated the hematoma problem, but because we can rotate the fabric around, it's easy enough to reposition the aid to make it more comfortable. Lena is really good about telling me when it starts to hurt. This aid is amazing. Lena can hear whispers with this one! I'd read a lot of controversial info about going digital in kids with Lena's kind of hearing loss (digitals are so advanced in honing in on speech sounds, that a lot of people report not being able to hear other things like door bells...but I figured, Lena can't hear those sounds anyhow, so we wouldn't be losing anything; as it turns out, she hears most everything with this aid). Another nice thing is that the volume control is clearly labeled (which helps me know it's set right...until Lena is able to set it herself based on what she needs to hear). The only real "down side" to this aid is that they are SO expensive I won't yet let Lena put it on or take it off without help.

So, at the top is a headband, underneath that is the aid (left piece is the oscillator, right piece is the microphone), and at the bottom is the safety strap.

Thank you Karl and Dot and the rest of the Lions Club!

What a difference you've made in Lena's life!!

So, as I'm sure you've figured out by now...we recently switched from contacts to glasses, as the fit of the Rx contacts just wasn't good, and we were losing them left and right. I ended up sewing some elastic such that a strap goes over the top of her head, and another goes behind her head to try to make up for not having an ear to hold the glasses up. It's not perfect, but it works ok unless she's super active. The problem is, the "L" created behind both ears by the elastic, forms triangles of pressure when combined with the hearing aid oscillator and mic. This pressure causes very painful swellings on her head. I guess going back to contacts will be easier. Additionally, Lena's vision is worse with glasses than contacts. The opthalmologist explained it like this: her eye is like a relief map...all bumpy from the abrasion scars. Glasses out in front of her eye correct some things some times, while contacts up against all the bumps of her eye help reshape and give correction to more physical points on her eye. We have another appointment this month with her ophthalmologist to discuss options.

Lena began piano lessons a couple weeks ago. She LOVES LOVES LOVES music. She has such good memorization skills and has memorized numerous musical things already. She can name "treble clef", "base clef", "whole notes - 4 beats", "half notes - 2 beats", "quarter notes - 1 beat", "quarter rests - 1 beat", "f - forte- means loud", "p - piano - means soft", "double bar line - means stop", etc. Amazing!


Lena also likes gymnastics and does her best to keep up with her sisters in this sport :)

I hope you're all healthy, happy, and loving life as much as Lena. Thanks for checking in. ~Karen

07/27/08

We've been having a fun summer swimming, biking, clubbing (book club, silly!), going to movies, bowling, playdates, hanging out at home, etc.

With MUCH time/energy this summer by everyone at home, Lena's speech is starting to improve AND she's more willing to use her signs while she's talking (so we can actually understand her). This makes me realize that the services she was receiving through the school system need to be "upped" about 1,000,000-fold for her to see any benefit from it. This is such an imporant time for her (developmentally)... I hate to think of all the learning opportunities she's missed. Last week I spoke to an LD teacher/friend of mine who gave me some good contact info within the school system, as well as ideas for updating Lena's IEP to be much more appropriate for her needs. Thanks, GB!

Lena has been wearing a prescription contact in her left eye for a couple months now. (These are different from the non-prescription ones she was wearing as "bandages" in her left eye to heal the ulcers after surgery.) She is seeing SO much better, which is esp. important b/c her right eye is still being patched many hours per day. Without the contact she sees about 20/1900 in her left eye (way worse than "legally blind"). With the contact she sees about 20/400. This has helped with her coloring, drawing, movie-watching, depth perception, balance, sign language skills, lip-reading...everything. Unfortunately, the prescription lenses are a different "fit" than the non-prescription... and they just POP OUT all the time. The ophthalmologist says they're a good fit and she's seeing well, so that's that. We've already had to replace them numerous times. As you can imagine, this is EXTREMELY expensive. This last time I re-ordered them, I spent a lot of time with the gal who does eye glasses there (again). There are lots of glasses made for wee little ones... some with straps... some with temple pieces that fit really snugly, etc. Absolutley nothing would "fit" Lena. The gal even spent a couple days researching sources online (as I have done myself) with no luck. Not only is Lena missing her left ear, but the area where the ear would be is greatly indented. If anyone out there has ANY ideas, we're all ears <haha>! (We've tried sewing loops into her caps and onto her headbands; we've tried sports straps; we've tried toupee tape.) This whole thing is yet another reason to consider having her hearing aided. If she were to have the bone-anchored conduction aid, I'm thinking there may be a way to attach eye glasses to the aid itself, OR maybe the surgeon could attach a little 'knob' or something (while she's under anesthesia) for the glasses to hook onto. When she's older she'll be able to have a prosthetic ear... or even a rib-grafted or other type of "permanent" prosthetic... but they don't want to consider that at this point, even with the eye glasses problem.

Soon Lena will see a new OtoNeuro guy at her ENT's office about his take on aiding kids like Lena. I'll discuss the glasses aspect with him as well.

Lena didn't get to go to VBS with her sisters this year (she's still too young), but we bought the Power Lab VBS music CD and she LOVES it. She knows most of the words and many of the signs to the songs and she so cute "rock-in out" to the tunes :) She never misses an opportunity after buckling herself into her carseat to ask me to turn it on. I'm thinking the kid needs her own personal, portable CD player WITH HEADPHONES.

Lena is no longer overly scared about stuffed animals and our kitties (although she's still very tentative and cautious with them). She's on the verge of learning to read (starting to sound out letters). She's learning to "read" sign language pictures on paper (try this yourself sometime: these are close-up drawings of hands doing sign language, with arrows pointing this way or that for direction... not easy without word-by-word instructions!). She is still a very big copycat (I try to tell the girls this is a sign of admiration...but they're not buying it!). She still has a hard time when schedules change or things get "out of order" (like her big sister goes potty BEFORE she does). While I do understand the need for consistency and schedules, b/c of Lena's difficulty with this I oftentimes intentionally change things up so that she understands her world won't fall apart with change. She's become as big a tattle-tale as her siblings and she can bicker with the best of them. That said, she usually gets along really well with them. Her jealousy of CeCe (being on my lap, being read to, etc.) has lessened. She still does things to try to make everyone laugh. I'm always amazed by her thinking and rationalization... she's very smart!

Only what?... a few more weeks of summer vacation?! Hope you're all enjoying yours! Thanks for checking in.

05/28/08

Lena finished her first year of preschool last Friday. At the Mother's Day Tea program the children signed and sang "Skinna ma rink a dink a dink..." and "I love Mommy, I love Mommy, yes I do...". So sweet!

This summer we plan to do lots of swimming. We just got out of the pool, in fact, and I've never seen Lena so sure of herself in the water. She was jumping in, swimming to me/steps/sides, floating on her back, trying to take a breath mid-swim, using her arms and legs, sitting on a float, not wanting to take a rest, splashing me and wanting me to splash her, etc. She is too funny!

Lena will continue with gymnastics this summer. She loves it and likes to practice at home as well.

Next Tuesday we'll celebrate Lena's first Gotcha Day. I can't believe it's been a whole year since she joined our family. She is a hoot! She's clever. She has adjusted amazingly well. She's braver and more sure of herself than ever. She's even more independent (if you can believe that... those of you who know her know she's been extremely self-sufficient from the beginning). She's sleeping better, eating better, playing better. She comes to us for comfort (for boo boos) and for tattling on her sisters. She loves to babble in her own little language (which for the most part is pretty cute, like when she says prayers you can understand "Dear God." Then you can sort of understand "Thank you for this food". Then you can't understand anything for the next couple minutes. Then she'll clearly say "Amen!" Too cute. She knows "Johnny Appleseed" and "May the Grace" to sing and sign with the rest of us. I am so very thankful for every moment with her :)

04/04/08

What a fun Easter we all had (Lena's first Easter ever). While outdoors taking our annual Easter pictures, the kids spotted a hidden Easter egg and went wild. The Easter Bunny usually hides eggs indoors here, but he was a tricky rabbit this year! There was a bit of disappointment at first, I think, because the first few eggs obviously had something (pennies) in them (you heard me right... they were not happy to hear anything shaking around inside!). The EB usually hides eggs filled only with pieces of paper containing parts to a riddle. The kids have to find all the pieces to the riddle, fill in the blanks, and then figure out what fantastic destination the EB is sending us to this year. One year it was bowling. The next, Cirque de Soleil (Mom's personal favorite!). And this year the EB sent us to Medieval Times. What a blast!

Lena had a new tube placed in her right ear last month. Immediately her hearing returned to low normal. She's SO cute when she's sitting in a restaurant or a store and realizes she can hear MUSIC playing in the background. She actually has great rhythm and LOVES music (playing it on her play piano, singing, dancing, clapping to the beat). She will be seeing the new otoneuro guy at her ENT's office for a bone conduction hearing aid consult in a couple months (as there is a lot of controversy in the field... some say with only one ear she should be aided no matter what; others say that as long as she has hearing within a normal range in one ear, no aid is needed). Lena has great difficulty localizing sound... and her hearing fluctuates quite a bit due to fluid. When they test her with a bone conduction aid, though, she hits near perfect scores regardless of fluid build-up, infections, etc. Her speech is improving. She's receiving speech, language, vision, and deaf/HOH services every week via the public school system in the comfort of her own private school classroom. She was fitted this week for contacts, which should be in next week or the week after. (Without an ear we can't keep glasses in the right place. Headbands with loops don't work. Hats with loops sewn in don't work. Toupee tape doesn't work...she sweats it off immediately). I can't wait to see how things improve for her once her vision is corrected.

Well, that's about it for news, I think. Until next time...

01/03/08

Lena had a great first Christmas. She very quickly got the hang of opening presents and putting them into *her* pile. She has had lots of fun jumping on the new trampoline and learning to pedal her trike and balance on skates. She is still using sign language in order to be understood. We are constantly looking up new signs in the sign language dictionary. She can identify all the colors and upper case letters. Her sisters and mom have had a lot of fun putting together a book of letters/signs/pictures, and Lena is really mastering the concept of which words begin with which letters. Most of the pictures are of Lena with something that begins with that letter... A is for "apple" (Lena with apples all around her) and A is for "alligator" (Lena hugging a fake alligator). She's learning to count. She can separate shapes by color, size, shape (although she can't name the shapes yet). She's figuring out "same" and "different". She's trying to jump on one foot and balance on one (although we really should work on using two feet better first!). She had a barium enema at the hospital yesterday (fun), vaccinations at the doctor's today, and other appointments every week for the next month at least... but she is such a trooper. Next Wednesday we'll be having our 6-month post-placement assessment with our new social worker. Slowly but surely the to-do list is dwindling, although we still have to apply for her SS card and start the readoption stuff in order to get her Florida Certificate of Foreign Birth. Heck, for that matter, we still need to to all that for Ty, too! Happy 2008! Until next time...

11/18/07 (as dictated by her sisters and mom)

Hi. My name is Lena. I just turned 3 years old. I am from China. I am my mommy's big helper. I like to get books for her to read to me. I like playing in my play kitchen, just like Mommy does in her real kitchen. I'm good at puzzles and scribbling and I love to paint. No one is sure yet whether I'm a lefy or righty... I keep switching it up to confuse the issue. I go to preschool in the mornings. My teachers are Mrs. Hoffmann and Mrs. Hallsworth. They use sign language in class so that I can understand better what's going on. I have trouble hearing, seeing, and speaking, but I am very smart and a copy-cat, too. Monkey see, monkey do. I already know probably 100 signs, even though I've only been learning English for a few months. I know how to use the potty (most of the time). I can fold my jammies and I can dress and undress myself. I'm very gabby, but most of the time no one knows what I'm saying. Hopefully after I get my hearing aids and more speech therapy my speech will improve. Also, hopefully, then I won't be so very LOUD (although I don't understand what all the fuss is about, as I have a sister who's really loud, too!). I love routines and hate it when anyone skips any step in those routines. For instance, when I go potty, I really MUST wash my hands with soap and water at the sink, even though my mommy might really want to just put me right into the bathtub (where there is soap and water). And at bedtime, it's kisses and hugs and then "Good night. I love you. See you later. Don't touch your eye. Close your eyes and go to sleep." It is absolutely not ever in any other order or, Heaven forbid, someone else tuck me in. That would be CRAZY and worthy of hours of tears! I am afraid of stuffed animals (and real animals and dolls and fuzzy books and toothpaste), but I brought my classroom's Clifford the Big Red Dog home one night (because I know how silly my fears are and more importantly, I didn't have any choice in the matter). Mommy had to journal and photograph Clifford's stay, and while he got into less trouble than the time CeCe brought him home, he was still jumping on the bed, staying up all night listening to Disney CDs, and hammering out some truly troubling tunes on the piano upstairs! He's a wicked-well-behaved mutt, that one.