comfort::Tango wagging his tail::bear hugs::tickle fights::cuddling all morning with my boys::managing some time with Josh on a date night::staying in my pj's all Sunday::reading stories::making goofy faces::taking a shower sans shower shoes with hot water::belly laughs::Josh making me coffee every morning::getting our therapy calendar straightened out::girls night out::Nate chasing fireflies::pretty flowers to liven up the kitchen::doctor appointments::and so much more!
Tuesday, May 25, 2010
Sunday, May 23, 2010
The Boy is Back in Town!
Jenn invited me to make a special guest appearance today - it's been quite a while, here goes.
This was a big week for us. I joined Jenn & LJ in Paterson for the last couple of days of feeding camp and the trip home on Friday. We're in the middle of our first "normal" weekend for the last 6 weeks. Tango, Nate and I are very happy to have Mom and LJ back home. LJ is really enjoying sleeping in his own crib and Jenn seems to like our house somewhat better than her pied a terre in Paterson.
Overall, feeding camp was a success. It is very difficult to manage expectations going into a program like this. Even the experts have a hard time estimating exactly where things will end up. LJ didn't quite make as much progress as we'd hoped, but he's made significant progress. The goal going in was to have him eating 1 oz at each "meal", 3 to 4 times a day. We did reach that level a few times last week, but it is still a struggle. LJ has a hard time coordinating all the necessary movements to open, close and swallow while keeping all the food puree in his mouth. Away from the volume goals, there was significant progress in the more intangible parts of his "dining experience". LJ is much happier during meals than ever before, when he does get upset, he recovers very quickly.
Like any new challenge, practice makes perfect. We will continue to work on all the skills we've learned, with the help of a local feeding expert at Children's and video conferences with the team from St. Joe's. We'll also go up for visits from time to time to evaluate LJ's progress.
It helps me to put all this in the context. Not long ago, LJ would gag at the sight of a spoon. Any attempts at feeding usually broke down into inconsolable tears within a few minutes. Today, he has tried and will continue to work with 9 different purees that were introduced at camp, including a number of vegetables, fruits and soy yogurt. His meals are generally happy (if not too nutritionally productive, yet) affairs, including lots of smiles and playing.
We're moving in the right direction and we're happy to have the family together, at home. Thanks so much for everyone's support, we really appreciate it. Have a good week.
This was a big week for us. I joined Jenn & LJ in Paterson for the last couple of days of feeding camp and the trip home on Friday. We're in the middle of our first "normal" weekend for the last 6 weeks. Tango, Nate and I are very happy to have Mom and LJ back home. LJ is really enjoying sleeping in his own crib and Jenn seems to like our house somewhat better than her pied a terre in Paterson.
Overall, feeding camp was a success. It is very difficult to manage expectations going into a program like this. Even the experts have a hard time estimating exactly where things will end up. LJ didn't quite make as much progress as we'd hoped, but he's made significant progress. The goal going in was to have him eating 1 oz at each "meal", 3 to 4 times a day. We did reach that level a few times last week, but it is still a struggle. LJ has a hard time coordinating all the necessary movements to open, close and swallow while keeping all the food puree in his mouth. Away from the volume goals, there was significant progress in the more intangible parts of his "dining experience". LJ is much happier during meals than ever before, when he does get upset, he recovers very quickly.
Like any new challenge, practice makes perfect. We will continue to work on all the skills we've learned, with the help of a local feeding expert at Children's and video conferences with the team from St. Joe's. We'll also go up for visits from time to time to evaluate LJ's progress.
It helps me to put all this in the context. Not long ago, LJ would gag at the sight of a spoon. Any attempts at feeding usually broke down into inconsolable tears within a few minutes. Today, he has tried and will continue to work with 9 different purees that were introduced at camp, including a number of vegetables, fruits and soy yogurt. His meals are generally happy (if not too nutritionally productive, yet) affairs, including lots of smiles and playing.
We're moving in the right direction and we're happy to have the family together, at home. Thanks so much for everyone's support, we really appreciate it. Have a good week.
Thursday, May 20, 2010
We Hear Your Silence
Hearing Your Silence by Donald Robin, Ph.D.,CCC-SLP
We don't understand
when we hear your silence
We can't see behind your frustrated eyes
when you plead for our attention
We are unable to feel your awkwardness
when you try to speak and the wrong sounds emerge
We cannot be inside you to will your tongue to move
when it struggles to find the roof of your mouth
We don't understand the fear that consumes you
when you are on the playground when you should be having fun
We are not privy to your brain that creates a world of words
only to have your muscles stop their meaning
We do not hear your mind communicating freely
only to have us look quizzically and ask for repetition
We cannot sense your joy at moments of clarity
only to have it rapidly disappear again and again
We do know who you are
when you look into our eyes
We can hold you tightly
when your fists clench and tears fill your vision
We will struggle with you each day and night
when you practice your speech sounds with great deliberation
We are proud of your trying
when we might just give up
We share with you your pain
when your mouth is tired and slow
You know that we will love you
when you are little and when you grow
You know that we will be there for you
when all seems dark and cold
You know that you are special and what you want to say
You know you are our children and who you are each day
You know your world is full and how to find the way
You know we hear your silence
You know we hear your silence
You know we hear your silence
(July, 2004 on the occasion of the First National Apraxia-KIDS Parent Conference)
Tuesday, May 18, 2010
Video-Feeding Camp Week 5
LJ has turned the corner from his awful flu/virus last week. I am glad it is behind us and that his chest x-ray checked out fine. But there have been too many highs and lows. For one, we missed several feeding sessions which seem to have set us back. We have been limited to juice and baby food in very small amounts ever since last Tuesday. LJ is still having trouble managing his secretions but Dr. Eicher thinks we are ready today to put different textures back into the protocol again. And if we eat any more sweet potatoes I think LJ will turn orange!
The huge relief last week was the swallow study. It holds such good prognostic value. There is no aspiration or misdirection of food. His oral phase is slow and slightly disorganized still, but things do move smoothly through the pharynx. Lew has the capability- he just needs lots and lots more practice and help. Only three more days to go! Nate is eager to feed his baby brother some yummy sushi now that 'he knows how to eat'. I think we might have to transition to mac & cheese before sushi but that's just what I'm thinking. What do I know? I am constantly reminded not to get too attached to the plan. LJ is a brave and courageous boy!
The huge relief last week was the swallow study. It holds such good prognostic value. There is no aspiration or misdirection of food. His oral phase is slow and slightly disorganized still, but things do move smoothly through the pharynx. Lew has the capability- he just needs lots and lots more practice and help. Only three more days to go! Nate is eager to feed his baby brother some yummy sushi now that 'he knows how to eat'. I think we might have to transition to mac & cheese before sushi but that's just what I'm thinking. What do I know? I am constantly reminded not to get too attached to the plan. LJ is a brave and courageous boy!
What About Mac & Cheese or French Fries? St Joseph's_May 18, 2010 from Jenn S on Vimeo.
Sunday, May 16, 2010
Friday, May 14, 2010
Bootcamp Day 20
Number of feeding therapy sessions per day: 4
Weight: 23 lbs 11 oz
Average temperature this week: 100.2
Variety of foods consumed: 5
Number of foods presented at each meal: 2
Daily medications: 3
Ounces of Hypoallergenic formula consumed each day: 32
Number of bootcamp days remaining: 5
Pass or Fail the Barium Swallow Study: PASS
Number of new teeth: 2
Generosity + kindness shown by our friends and family: more than we ever imagined....
Monday, May 10, 2010
Lessons from Feeding Camp-Week 4
LJ and I are closer than ever. To each other. To the finish line. Just closer to everything. This feeding thing takes time. Literally, it takes a lot of time (14 hours to complete all the tube feeds). And it takes a lot of tweaks to the protocol. So we learn lessons from all of these things. There's a lesson in hope. I'd hoped for more by the start of week four; but we're making little steps. His Nanny and Babu visited last week-arms full of hugs and smiles on their faces (and a break from all the quiet, lonely days). Nate and I played Battleship and Lego's & ate takeout all weekend. Nate tells me he loves me more than all the cotton candy in the world. I love both these boys with all my heart.
With only two weeks left, things are still quite topsy-turvy. Present spoon - present positive reward- wait and give reinforcements only during latter half of a feed- only at the beginning - ignore - give attention - play. I'm learning this is a totally fluid thing- no pun intended! Currently at the moment LJ has come down with a fever and a raspy cough. This past Friday my email got hacked and all my files were deleted. Never a dull moment and on cue from LJ I've learned to roll with the punches.
LJ is trying so HARD. Despite still having some coughing, crying, retching episodes, his disposition is so sweet and he puts forth such a tremendous effort. It's tough to see other kids who are here dealing with a completely behavioral problem. The moms sit in the waiting room in between feeding sessions and share stories of the kicking, screaming and battles of the will. I silently think how much I would give to just have LJ even physically be able to take a bottle! The problems are so diverse here and I know my son is not the only one with the muscular limitations- a little girl C just graduated last Friday from the program and she used to have a Gtube and a Tracheotomy! This was her 3rd "camp"....Lew has a will too. I'm certain he is a fighter.
The experts have kept Lewis on a sequence of "tastes" comprising puree of squash, then puree of sweet potato then some apple juice (or cranberry is also interchangeable). He always needs some type of chin support to help his mouth close down, his lips seal with the spoon and then swallow any puree. (see video from previous post). Inevitably some food always escapes...some with projectile than others! The team has also done THE "Hyoidglottal". No kidding, the name of this chin hold is tossed around here as if it's the 21st century's dance to know! The hyoid are bones in the laryngeal area of the throat. Having the proper support there prompts the organizational pattern in order to swallow more effectively. LJ objects to this more than any other touches, yet some kids with sensory problems need the additional input. If they train me how to do it I am nervous I'll push the wrong bone and impede his airway! There's no escaping that fear thing is there? Doc still is not sure if they will keep the hyoidglottal in the game plan or whether to change it up yet again. So I won't have to worry about it for awhile.
LJ is still able to swallow some of the food, but he expels some of the food with every "taste". He has what they call an anterior-posterior swallow pattern (see article here). The key to feedings should be the placement of the spoon's bowl. The docs and therapists think he's amazing. How does he manage to spit the food out even when the puree is placed all the way at the back of the tongue? Why does it appear that some of the food is causing discomfort because it goes up his nose some times. We are going to have another Barium Swallow Study this Wednesday morning to see if it can help us with the game plan. I wouldn't say that the feeding team is disappointed with our level of progress because we are making our own little steps. At least he's not crying every time a spoon approaches his mouth! At least he is not arching backward all the time. At least we won't look back in twenty years and have asked ourselves what if we never reached this crossroad. We're a work in progress. Life is changing. That's the lesson I've learned.
LJ with the world's most patient + loving Feeding Therapist, A.M. (note: the two-way mirror in the background)
With only two weeks left, things are still quite topsy-turvy. Present spoon - present positive reward- wait and give reinforcements only during latter half of a feed- only at the beginning - ignore - give attention - play. I'm learning this is a totally fluid thing- no pun intended! Currently at the moment LJ has come down with a fever and a raspy cough. This past Friday my email got hacked and all my files were deleted. Never a dull moment and on cue from LJ I've learned to roll with the punches.
LJ is trying so HARD. Despite still having some coughing, crying, retching episodes, his disposition is so sweet and he puts forth such a tremendous effort. It's tough to see other kids who are here dealing with a completely behavioral problem. The moms sit in the waiting room in between feeding sessions and share stories of the kicking, screaming and battles of the will. I silently think how much I would give to just have LJ even physically be able to take a bottle! The problems are so diverse here and I know my son is not the only one with the muscular limitations- a little girl C just graduated last Friday from the program and she used to have a Gtube and a Tracheotomy! This was her 3rd "camp"....Lew has a will too. I'm certain he is a fighter.
The experts have kept Lewis on a sequence of "tastes" comprising puree of squash, then puree of sweet potato then some apple juice (or cranberry is also interchangeable). He always needs some type of chin support to help his mouth close down, his lips seal with the spoon and then swallow any puree. (see video from previous post). Inevitably some food always escapes...some with projectile than others! The team has also done THE "Hyoidglottal". No kidding, the name of this chin hold is tossed around here as if it's the 21st century's dance to know! The hyoid are bones in the laryngeal area of the throat. Having the proper support there prompts the organizational pattern in order to swallow more effectively. LJ objects to this more than any other touches, yet some kids with sensory problems need the additional input. If they train me how to do it I am nervous I'll push the wrong bone and impede his airway! There's no escaping that fear thing is there? Doc still is not sure if they will keep the hyoidglottal in the game plan or whether to change it up yet again. So I won't have to worry about it for awhile.
LJ is still able to swallow some of the food, but he expels some of the food with every "taste". He has what they call an anterior-posterior swallow pattern (see article here). The key to feedings should be the placement of the spoon's bowl. The docs and therapists think he's amazing. How does he manage to spit the food out even when the puree is placed all the way at the back of the tongue? Why does it appear that some of the food is causing discomfort because it goes up his nose some times. We are going to have another Barium Swallow Study this Wednesday morning to see if it can help us with the game plan. I wouldn't say that the feeding team is disappointed with our level of progress because we are making our own little steps. At least he's not crying every time a spoon approaches his mouth! At least he is not arching backward all the time. At least we won't look back in twenty years and have asked ourselves what if we never reached this crossroad. We're a work in progress. Life is changing. That's the lesson I've learned.
LJ with the world's most patient + loving Feeding Therapist, A.M. (note: the two-way mirror in the background)
Sunday, May 9, 2010
Mommy-hood
I made up this collage on word cloud art of all the characteristics that describe the unimaginable and challenging experiences I've had this year as a mom and daughter-and all the ones to come. It's an evolving thing keeping our hope as we make our way through the unknown. I am always working on it and learning- getting better and better at it each year. But I try to remember what is to be a mom and how fortunate we are. And it is an unwavering certainty that I say I love you Mom. Unconditionally. Happy Mother's Day to all you Mommies out there, wherever you are along your adventure.
Wednesday, May 5, 2010
Monday, May 3, 2010
Feed Me, Seymour
OK maybe LJ doesn't really beg to be fed....The weekend was too short. Nate was wonderfully charming. We went on a "Nate Date" and he let Mommy take him to his faves- the library, a pizza lunch and then the playground. We also had a special day out with Thomas. There were of course tears when we had to say goodbye but I feel better already thinking about the happy moments we shared.
We couldn't figure out how to cut and paste an edited shorter video over the weekend (the professional ones from Bootcamp are 20 minutes long!)- thanks for your patience. So below is an unofficial video. It's LONG too- but only 5 minutes- so if you have a couple minutes be sure to check out how hard we're working. LJ's weight has dropped 1 oz since Friday but I'm not buying it. He looks bigger and happier and I guess that's just the way things go-up and down. Plus, it's close enough for me. We've added squash puree and pear puree to LJ's meal plan this week. It's not pizza, or ice cream or chocolate chip cookies but this is progress.
Enjoy!
Friday, April 30, 2010
Snapshot of Life in Paterson, NJ
Today marks the end of week TWO for feeding "bootcamp". We are gently closing the door on yesterday and throwing away the key. Although the list of things we are working on is quite long, we are trying to savor the good moments and not focus so much on the discouraging ones. So far this week, the doctors and therapists here at St. Joseph's have changed the game plan slightly-they are an excellent team. We started the week with a ratio of one dry spoon to every two spoons dipped in juice. Happily, he did this without gagging or retching too badly. He is learning to swallow folks! We slowly added a little bit of pureed sweet potatoes (Next week I've requested pureed pizza and ice cream to entice the lil guy!) to the juice this past Wednesday and he is opening wide, sometimes closing down and sometimes even swallowing the food. Do I still fantasize about him eating solids and table foods? Absolutely. But I know the reality is we will at least be getting LJ to swallow some purees by the time we come home. I know that he is going to persevere. The big wean from his g-tube will come some day- just not magically overnight. From that day on we will all live happily ever after!
The other big change has been the dosing of his meds in order to make his GI System more comfortable. Instead of 15 mg prevacid for his severe reflux issues administered once in the morning and again before bedtime we are now giving him the full 30 mg Prevacid first thing in the morning. The doctor also prescribed Cyproheptadine as a gastric motility (this helps move anything he eats through his GI track at a more typical rate) agent twice a day once before he naps and again at bedtime (he used to get Erythromycin about 7 or 8 months ago but he developed an allergy to it over time; Reglan is another drug they use but it is known to cause seizures so that is out). I had been under the impression that there weren't any other drugs to help LJ on this front...until now. Additionally, we have reduced the volume of his g-tube feeds to 160 cc's (they had reached up to 210 cc's each feeding) which means we now have to feed him 7 times a day to get him to the same place. Strangely, he lost 1 pound over the first week. It was baffling everybody. Stress? I wish I'd lose weight that way because this hasn't been a picnic! But we think we've devised a new plan so he will get the extra calories he needs. And as of today he was almost back up (11 oz) to his starting weight.
And lastly we had a visit with a pediatric ENT here followed by a pediatric hearing test. I am sure I am going to have to battle insurance on this one since the hospital is "out of network" and had "only approved the Center for Pediatric Feeding and Swallowing". The key here though is pediatric audiology. The first hearing test was an OAE Tympanogram on Tuesday. LJ's Aunt Joanne and Uncle Jeff were here to keep us company that day. Boy was it nice to have family there to talk with. We also had company from my Aunt Jill on Wednesday. It is so validating and comforting to get fresh eyes looking at the progress being made here! (Thank you. Seeing LJ through your eyes has really helped reinforce my belief in Lewis.) We knew he would fail the OAE on his left ear because he has a lot of fluid for the test at home. But he failed the OAE on his right ear- the one without any fluid in it so another un-sedated BAER test was ordered for Thursday morning to get more insight. The second BAER test went soooooo v. smoothly. The equipment was newer technology than what was used in the past & LJ slept through the entire test-electrodes and all. We were all finished in an hour. Nobody is sure why, luckily though the right ear passed the BAER so perhaps whatever it was has resolved itself. The left ear is still a problem.
We are still worried about LJ's hearing, though a lot more confident in our decision to go through with PE Tubes surgery. It would be great if we could take care of this here at St. Joe's. The only problem is wrangling with insurance. That and it would take away from his Feeding Program since he most likely would need recovery time. My motto this week: We're gonna laugh more and cry less...and that's for LJ too not just me:D
"Eating is our earliest metaphor, preceding our conciousness of gender difference, race, nationality and religion. We eat before we talk."
- Margaret Atwood
I will post a video later this weekend of one of the feeding therapy sessions from this week so that you can all applaud all LJ's efforts! We miss Nate terribly and can't wait to have a nice family weekend!
The other big change has been the dosing of his meds in order to make his GI System more comfortable. Instead of 15 mg prevacid for his severe reflux issues administered once in the morning and again before bedtime we are now giving him the full 30 mg Prevacid first thing in the morning. The doctor also prescribed Cyproheptadine as a gastric motility (this helps move anything he eats through his GI track at a more typical rate) agent twice a day once before he naps and again at bedtime (he used to get Erythromycin about 7 or 8 months ago but he developed an allergy to it over time; Reglan is another drug they use but it is known to cause seizures so that is out). I had been under the impression that there weren't any other drugs to help LJ on this front...until now. Additionally, we have reduced the volume of his g-tube feeds to 160 cc's (they had reached up to 210 cc's each feeding) which means we now have to feed him 7 times a day to get him to the same place. Strangely, he lost 1 pound over the first week. It was baffling everybody. Stress? I wish I'd lose weight that way because this hasn't been a picnic! But we think we've devised a new plan so he will get the extra calories he needs. And as of today he was almost back up (11 oz) to his starting weight.
And lastly we had a visit with a pediatric ENT here followed by a pediatric hearing test. I am sure I am going to have to battle insurance on this one since the hospital is "out of network" and had "only approved the Center for Pediatric Feeding and Swallowing". The key here though is pediatric audiology. The first hearing test was an OAE Tympanogram on Tuesday. LJ's Aunt Joanne and Uncle Jeff were here to keep us company that day. Boy was it nice to have family there to talk with. We also had company from my Aunt Jill on Wednesday. It is so validating and comforting to get fresh eyes looking at the progress being made here! (Thank you. Seeing LJ through your eyes has really helped reinforce my belief in Lewis.) We knew he would fail the OAE on his left ear because he has a lot of fluid for the test at home. But he failed the OAE on his right ear- the one without any fluid in it so another un-sedated BAER test was ordered for Thursday morning to get more insight. The second BAER test went soooooo v. smoothly. The equipment was newer technology than what was used in the past & LJ slept through the entire test-electrodes and all. We were all finished in an hour. Nobody is sure why, luckily though the right ear passed the BAER so perhaps whatever it was has resolved itself. The left ear is still a problem.
We are still worried about LJ's hearing, though a lot more confident in our decision to go through with PE Tubes surgery. It would be great if we could take care of this here at St. Joe's. The only problem is wrangling with insurance. That and it would take away from his Feeding Program since he most likely would need recovery time. My motto this week: We're gonna laugh more and cry less...and that's for LJ too not just me:D
"Eating is our earliest metaphor, preceding our conciousness of gender difference, race, nationality and religion. We eat before we talk."
- Margaret Atwood
I will post a video later this weekend of one of the feeding therapy sessions from this week so that you can all applaud all LJ's efforts! We miss Nate terribly and can't wait to have a nice family weekend!
Monday, April 26, 2010
Saturday, April 24, 2010
Feeding "Camp" Update
Tuesday, April 20, 2010
Happy Anniversary.
I love you. Thank god I married the "one". I won. I love our family. I love my life. I'm only sorry we have to be apart for this one. Here's to many more years of adventures, laughter and growth!
Saturday, April 17, 2010
M-I-C-K-E-Y M-O-U-S-E
We got suited up for a mandatory life boat drill. LJ was amused by everything it seemed. Especially some of the new friends he made:)
Here we are in the morning taking in the beautiful sights of Nassau from our deck........watching the blue-green of the water below slap by us. We all got that childlike feeling one gets from travel. We all felt the excitement of being somewhere new. We charged everything with a tiny key card- no exchange of bills or credit cards. We soaked up these lovely moments before life is going to get very crazy for awhile. Pretty much the perfect start to a busy month. I believe in St. Joseph's. I have faith in the doctors and therapists. I'm game for the adventure. When we get home tomorrow we drive straight up to Peterson for the first day of feeding camp. It's going to be a very long day of travel filled with anxiety and anticipation for what lies ahead.
Monday, April 12, 2010
dr. visit
Here are the updated stats from LJ's pediatrician visit today. Yes folks, he is 18 months old....
Noodles = 33" long (this translates to the 70% on the charts)
Noodles= 24 pounds (this is 25% on the charts)
Noodles' head circumference = still pea-size....46cm (10%)
Noodles currently is taking 18 "tastes" by mouth.
I suppose it's fair to say he's one tall, skinny, dapper gent!
Noodles = 33" long (this translates to the 70% on the charts)
Noodles= 24 pounds (this is 25% on the charts)
Noodles' head circumference = still pea-size....46cm (10%)
Noodles currently is taking 18 "tastes" by mouth.
I suppose it's fair to say he's one tall, skinny, dapper gent!
Friday, April 9, 2010
Fox In Socks
Tuesday, April 6, 2010
Audiological Torture
Noodles went in for a fancy hearing test today....also known as parental torture. The Auditory Brainstem Response Test (otherwise known in the field as the BAER test) tests hearing from the inner ear to the brainstem. Noodles had this test in the NICU before he was discharged and his hearing was normal, but he has been having problems with fluid in his ear + his speech has been slow to develop (I think the non-fuzzy clinical term is "Non-Verbal"). So, the ENT doctor thought it was necessary to see if he had any hearing loss.
The test requires that the child be sleeping. LJ had this test today at 1:00pm and it was a challenge to get him to stay calm. I got a call at 11:00am saying we would need to engage in a little sleep deprivation this morning beforehand because we were going to attempt the test au naturel (meaning no sedation!). Even though LJ was tired, we didn't complete a read on his left ear until 3:00pm. This was mostly because he was so squirmy and partially because the "CuraSilk" cloth tape used to adhere the electrodes on his ears and forehead wouldn't stay affixed (As I'm typing I just found some of this tape on my neck...and my jeans thank you very much).
Didi really helped me stay (moderately) calm and still keep the the technician inline- I wish they could have just given us all a Versed. It would have been much more tolerable. It was very disappointing that this procedure wasn't better suited for an 18-month-old.
If we can determine how much hearing loss LJ has in the conversational range, (between 2,000-4,000 hertz range + 0-20 decibel range is normal hearing) it will help determine how much intervention Lewis needs to properly develop language and speech. (Normal hearing tests don't test this specific frequency). Survey Says? Fail. He failed the test in his left ear. The docs will have to sedate LJ to do the ABR at another time.
The technician put his left ear hearing at the 55 -60 decibel range. The audiologist said that means he doesn't hear vowels very well. She thought that he probably didn't hear unless we were shouting....and she thinks one of the contributing factors to his hearing loss is the fluid in his ears since she still couldn't get any OAEs (sound waves in the inner ear) either. We got no results at all on the right ear. LJ woke up as soon as the gear was attached to his right ear and he gave us a run for our money. Since the equipment is not smart enough to work while toddlers are trying to pull off all the wires we'll have to schedule the sedated ABR test which will probably be in the next few weeks...but everyone has taken a chill pill for now, and is relaxing at home quietly:)
The unfortunate thing is that we'll have to do a repeat BAER as an inpatient at the hospital (preferably Children's).
Hopefully he'll pass the test on the right ear, or maybe we'll find that there was something wrong with this test (it didn't go very smoothly and we were using the second string equipment, the modern tester was broken). We would of course cheer for joy big time! If he passes in one ear we might forgo the PE Tubes surgery. Otherwise, that's coming sooner, rather than later...
For public record....he hears Tango barking at our mailman just fine! This makes us all very cranky at naptime. And if you ask him to "honk" your nose, he will reach out and honk honk honk your nose. Go Noodles go!!! More later.
don't let this smiley lil guy fool ya! he didn't have fun...just trained to smile at the camera!
Didi really helped me stay (moderately) calm and still keep the the technician inline- I wish they could have just given us all a Versed. It would have been much more tolerable. It was very disappointing that this procedure wasn't better suited for an 18-month-old.
If we can determine how much hearing loss LJ has in the conversational range, (between 2,000-4,000 hertz range + 0-20 decibel range is normal hearing) it will help determine how much intervention Lewis needs to properly develop language and speech. (Normal hearing tests don't test this specific frequency). Survey Says? Fail. He failed the test in his left ear. The docs will have to sedate LJ to do the ABR at another time.
The technician put his left ear hearing at the 55 -60 decibel range. The audiologist said that means he doesn't hear vowels very well. She thought that he probably didn't hear unless we were shouting....and she thinks one of the contributing factors to his hearing loss is the fluid in his ears since she still couldn't get any OAEs (sound waves in the inner ear) either. We got no results at all on the right ear. LJ woke up as soon as the gear was attached to his right ear and he gave us a run for our money. Since the equipment is not smart enough to work while toddlers are trying to pull off all the wires we'll have to schedule the sedated ABR test which will probably be in the next few weeks...but everyone has taken a chill pill for now, and is relaxing at home quietly:)
The unfortunate thing is that we'll have to do a repeat BAER as an inpatient at the hospital (preferably Children's).
Hopefully he'll pass the test on the right ear, or maybe we'll find that there was something wrong with this test (it didn't go very smoothly and we were using the second string equipment, the modern tester was broken). We would of course cheer for joy big time! If he passes in one ear we might forgo the PE Tubes surgery. Otherwise, that's coming sooner, rather than later...
For public record....he hears Tango barking at our mailman just fine! This makes us all very cranky at naptime. And if you ask him to "honk" your nose, he will reach out and honk honk honk your nose. Go Noodles go!!! More later.
Sunday, April 4, 2010
Scenes from Le Week....
Spring Break for Nate. LJ rocked his feeding therapy this week- eating 17 bites or tastes of pureed food (brisket, pears veggies and butterscotch pudding). Good times with visits throughout the week from good friends Brett + Beth, Alex + Tas and Kim + baby Addy. All of our friends and families' visits have really kept us going and make the day-to-day grind withstanding. Here we are celebratin' Nanny and Bop's respective birthdays again. This year I made them a flourless-walnut-chocolate fudge cake that my mom's Nanny used to always make her....and in honor of Bop's big 70th we put a single candle in it that said "old". Tacky huh? My MIL's mom Et, 94, is LJ's #1 cheerleader...and she was able to make it over to my house for the celebration- we are grateful! Other than that we've started getting ready for our big trip up to NJ. Nate packed his rolling bag chock full of toys and books and asked me if I would mind packing his clothes in my bag because he didn't have any room left for them in his;) I suppose he's ready for the adventure whether or not we are! (I guess I should also admit that since my new mantra on March 12th I haven't been back to a yoga class and the fear has unfortunately crept back into my life.)
Friday, March 26, 2010
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