Showing posts with label Hearing Loss. Show all posts
Showing posts with label Hearing Loss. Show all posts

Nov 9, 2011

Peyton's Story

Peyton’s story begins long before she was born when her father, Travis, and I met in high school. We were high school sweethearts but before graduating went our separate ways. I went on to marry another for almost 8 years. He moved out of the state but remained single. Fifteen year passed before I contacted him. A year later I moved to California to be with him. Since both of our families were in Utah as was my job we were on our own without a safety net.

We knew we wanted children and because of our age, decided to get started immediately. We were thrilled to discover I was pregnant within just a few weeks of trying but just days later and only three days before our wedding – I suffered a miscarriage. But our hopes soared quickly when less than a month later we had another positive pregnancy test. We felt certain that it would be a girl. I remember hearing of the show Peyton Place as a child and loved the name. So just days after discovering the pregnancy we had named our baby to be Peyton mere weeks before Peyton Manning won the Super Bowl!

The pregnancy seemed to progress well until about the 25th week when I went into preterm labor. After some rest and fluids the contractions stopped but it was our first hint this pregnancy could be at risk. At about 32 weeks I surprised Travis with a 3D ultrasound. The technician had previously worked in a high risk maternal fetal group and was seeing some things that concerned her. She recommended we have the hospital perform another ultrasound. Within days of that ultrasound I got a call from my obstetrician recommending we seek yet another ultrasound at the high risk maternal fetal group in the area. After two ultrasounds that were concerning we weren’t surprised that after the third ultrasound was completed the geneticist wanted to meet with us. Peyton was showing signs of a syndrome but at the time they didn’t know which it was. She had micrognathia as well as several measurements that were smaller than average. Just weeks out from delivery the geneticist let us know that there was nothing more to be done and we would have to wait until after she was born to learn more.

On my hospital tour I had already discovered that it did not have the highest level NICU and with a potential airway issue I consulted my obstetrician about potentially transferring my case to another hospital but she did not seem concerned. I also recommended a scheduled c section to ensure all the necessary specialists were in place but also due to my mother’s history of barely making it to the hospital for delivery. Again, I was rebuffed so I hunkered down to wait for labor to begin. We had a few weeks to contemplate the news that Peyton may have some medical issues, but without any knowledge of the particular syndrome there was no ability to prepare for what was to come.

I was four days past due when my labor pains started. When I first realized they were contractions they were only 3 minutes apart. When I called my obstetrician she didn’t seem overly concerned since they weren’t very painful and suggested I stay home until they worsened. Within minutes of hanging up the phone with her they intensified and by the time we made it to the hospital about 15 minutes later there was no mistaking that I was in labor. I was only dilated to a one, though so they initially considered sending me home but just a few minutes after that assessment Peyton’s heart rate dropped. The room filled with people and after having me change positions her numbers returned to a healthy level. The scare coupled with my rapidly progressing labor, they decided to go ahead and put me in a room but just moments after getting me there Peyton’s heart rate dropped a second time and they were having a difficult time getting it back up. A quick decision was made to proceed to the operating room for an emergency c-section.

Initially I was focused on getting the epidural and as the painful haze was replaced by numbness I realized she was out but it was not like any baby show I had ever seen. They immediately moved her behind where my husband sat and I caught a glimpse of thick, black hair but no one said a word. I looked at my husband and above the mask saw my fear reflected in his own eyes when I kept asking why she wasn’t crying. He just shook his head because he didn’t have any answers either. Within moments he was hustled out of the operating room and I don’t remember anything else until I woke up in recovery later.

I am not sure how long I was out, but Travis had been taken to a small waiting room. During that time he made some panicked calls to family back in Utah. Eventually, a nurse brought him back to the NICU to see Peyton. Early on we were told that Peyton was in respiratory distress and due to her abnormally small jaw her airway was tiny. After reading her medical records, I later learned that the umbilical cord was wrapped around her neck twice and she had aspirated meconium, further compromising her ability to breathe. In that first hour, they tried twice to intubate her and were not able to so they had an ambulance on the way to pick her up and transport her to UC Davis Medical Center because they had the highest level NICU in the area. Before the transport team took her away, they wheeled her incubator to my room so I had a chance to see her. Travis had a few moments to check on me before he followed her to the hospital. My sister and brother were on a plane within hours of my husband’s call and they helped to keep me entertained while he was monitoring Peyton’s condition. Later that evening he returned to the hospital I was at and for the first and virtually only time, he broke down. I must still have been in shock because as he was crying I felt completely unemotional. I was so distant that my sister expressed concern to her husband on the phone that night. It wasn’t until the next morning when I called the NICU to check on Peyton’s status that it all came crashing down. When the NICU nurse asked me who I was I sobbed as I said, “I’m her mother”.

That first day, Travis had to make a decision to allow a breathing tube and a PICC line. I was released on her third day of life and had one opportunity to see her before we had to make the difficult decision to allow the doctor’s to perform a tracheostomy. I didn’t realize it at the time but I was suffering from a spinal fluid leak. Despite going in for a blood patch on the fourth day of her life, it didn’t work and it took a week before I could stand without agonizing headaches. But during that week, I refused to let it stop me from seeing her and after a 30 minute drive to the hospital each way, I would walk several football fields to get from the parking lot to her bedside with my head throbbing and recovering from the c section. It was my first taste of what it meant to ignore my needs in lieu of hers.




Within the first week of her life, the geneticist at UC Davis informed us that they believed Peyton had Nager Syndrome. It was very rare – at the time there were less than 100 diagnosed cases. There was no genetic test so the diagnosis was made on her clinical symptoms: micrognathia, abnormal palate, overlapping toes, fused bones at the elbow, shortened forearms and her craniofacial differences. We would later learn she had no ear canals and had severe hearing loss in both ears and also had aortic valve disease. Peyton would spend six weeks in the NICU and during that time she would have a feeding tube placed. When she finally came home our house was full of machines and medical supplies. We were so fortunate to have nursing because without any family or friends close we had a lot to learn.



In May of 2010, we moved to Utah to be closer to our families and we are currently living in Sandy. Peyton is now four and attending preschool.






She is still trached and still has a feeding tube. There is probably no chance of either being removed in the next several years. In the last year she was also diagnosed with asthma with her trigger being cold & flu. But despite nine upper respiratory infections over five months last year we avoided any hospitalizations. She is healthy and her airway is stable, in fact she can spend most of the day with a cap over her trach tube. She has had three hand surgeries and two jaw distractions and will have plenty more surgeries in her future.

Peyton is a firecracker with a very engaging, dynamic personality. She is outgoing and social despite her speech difficulties.



With the recent addition of an iPad with a communication app we are hoping she will have the ability to communicate more easily with others. Because there is no data on the likelihood of having another child with the syndrome, we have chosen not to have any additional children, but Peyton is kept company by her two furry brothers – Henry and Chili. She also has two sides of her family that spoil her rotten and embrace everything about her – we are so fortunate in that regard.

A few weeks before her birth, I started a blog and it became a source for family and friends to follow her progress. Years and eight hard bound books later, it is a baby book beyond anything I could have imagined. Not only does it track her medical progress but it gives a peek into her world – the good, the bad and the ugly.

We derive support from many sources – tracheostomy.com, the Nager and Miller Foundation, Hope Kids, and the blogs of other special needs parents and our family and friends. Finding the Kidz website is just one more place to feel acceptance and understanding and we are excited to be a part of it!




By Peyton's mom, Tracy. You can read more about their journey on their blog, Peyton's Place.




May 3, 2010

Today I witnessed a Miracle Unfold

I was taking photos of your silly faces when you heard your sister playing and looked in her direction. Once again I was overcome with gratitude for the scientists, doctors, and those who went before you that made cochlear implant technology a reality and brought sound into your world.

Apr 20, 2010

Go Ahead and Stare, It's What People Do

Not so sure why we tell our children that it is not polite to stare.

So much of this world is begging to be stared at. Go to the zoo and stare at the animals, or to the beach and stare at the sunset. Pretty faces plastered on magazines, TV, movies; we're encouraged to stare at them.

But stare at a person, in person? So rude.

I have no shame when it comes to staring at people. Beautiful people, I love to stare at them. Men and women. If I find someone striking, I'm gonna get my eyeful.

One of Graham's surgeons was positively stunning. Over six feet tall, long and lean, nerdy horn rimmed glasses, slick pitch black hair, perfect Chinese features. He looked like a porcelain doll. I don't say things like this, but he had the face of a freaking angel.

So when he was around, I stared. I got caught often. I didn't care. I kept on staring. He was that beautiful, it would have been a shame to miss one second of that gorgeous creature.

I'm an equal opportunity starer. If you are strikingly ugly, I'm gonna check you out too. Maybe I'll find something pleasant in your fugly mug. Maybe I'll tell my friends that I'm sure I saw the butt-ugliest person on the planet; aren't I lucky?

It may be because I've always been so shameless in my staring, that I've never minded Graham being stared at.

Come on, before I had Graham, if I'd seen a woman with a floppy fat baby on her hip, a tube sticking out of his shirt that was hooked up to some funky contraption slung over her shoulder, I'd have stared my face off.

And stare people did, and do. All the time. And it's never bothered me. Human nature is curious. I know this. I love this.

Sometimes the person staring would apologize, and ask what was wrong with him. I'd assure them, no apology necessary, and do my best to explain him.

What mommy doesn't like bragging about her baby? Well, I had more bragging rights than most mommies. And one hell of a story to tell.

I welcomed the stares, and the questions.

Graham's first pair of ear molds were bright green and I loved them. I loved the stares they garnered. I loved getting to tell his ever evolving story.

For some reason, for his second pair of ear molds, we decided on clear. His ear doctor was thrilled;

"Wow, you can't even tell he's wearing hearing aids!"

I hated them. Because they were invisible, and made this very important part of Graham invisible. They only lasted a couple months and we were back to bright colors.

And kids stare at them. All the time. And I love when kids ask about them. Because that's what they should do.

I love when parents get it and encourage their kids to ask.

I've wanted to smack some parents for their ignorance.

Don't scold your child for noticing something different about another child. Praise the child for recognizing that difference exists and celebrate together diversity, ability, difference.

Beach season is around the corner. Graham will be running around without his shirt, in all his scarred up glory.

I want him to catch a kid staring at his scars and tell that kid that he was sicker than any baby ever. That he's had more surgeries than anyone he knows.

I want him to make up a story about saving his sister from a pack of angry wolves.

I want him to welcome the stares and be as proud of those scars as I am.

Nov 11, 2009

Emma's Story

My name is Kristina and I live in Delaware with my husband Chris. We have 2 children, Julia and Emma. You can read all about our family on my blog How Life Happens.


I was sick for all 9 months while pregnant with Emma. Even so, I was thrilled to find out that Emma was a girl! I think it's great for a girl to have a sister and I was so happy Julie would get to have a sister!


Emma failed the newborn hearing screening in her right ear. Everyone told us it was probably fluid in her ears and not to worry. So, I didn't worry at all and thought that the worst thing we would be told is that she is deaf in one ear and that she would learn to compensate with hearing out of her other ear. After about a month we had her hearing checked again and she didn't pass either ear. Many tests later we found out that Emma was deaf the day before Thanksgiving, when she was 6 weeks old. When she was 3 months old we found the cause of her deafness was a CMV exposure, and that set us on our path of where we are today.


I was sad, angry and felt pretty guilty that it was me that passed the virus onto Emma. I did a lot of crying but eventually realized that I'm completely and helplessly in love with Emma and that we'll do whatever is necessary to make her life easier and sitting around crying and feeling sad would not get us the help we needed. Chris was upset, too, but handled the whole situation better than I did. He has always had that attitude that we'll make sure Emma is the best Emma she can be and that this must be the path God meant for us and we will all be just fine.



I prayed a ton. I still do. I also started reading blogs by parents, joined a couple Yahoo Group list-servs, and sought out other parents in the community with special needs children.

Emma's official diagnosis is Congenital CMV resulting in profound hearing loss (Emma is deaf) and spastic quadriplegic cerebral palsy. I had never heard of CMV before I had Emma and am now on a mission to inform every person I know about CMV. Please visit Stop CMV for more information on how to prevent CMV-related birth defects and spread the word to anyone you know who is considering or is already pregnant.

Emma receives the following interventions: Physical Therapy, Occupational Therapy, Speech Therapy, Auditory-Verbal (for her cochlear implant), Early childhood education, Therapeutic Riding, and Craniosacral Therapy.



Emma is an amazingly happy little girl who inspires everyone around her.


Right now we take it one day at a time. Emma grows stronger each day and we hope that we will have to child-proof the house soon! We also believe that her cochlear implant will give her access to spoken language and that she will start to communicate through words in the near future.


My advice to other parents is to enjoy your child for the unique qualities they have and live in the moment. It's easy to get caught up in the what-ifs, the milestones not met, the unknown, but it's so much more rewarding when we let go of our expectations and enjoy our children for who they are.


Resources I recommend: John Tracy Clinic, CICircle, and CP Moms Yahoo group.

Sep 28, 2009

Every Child Deserves Unconditional Acceptance

Children's Craniofacial Association has declared September as Craniofacial Acceptance Month.

HE'S MY SON

Yes, I am aware that September is over. But I can honestly say acceptance is something I fight for every day of the year, on behalf of my son. Born at 36 weeks, Austin was diagnosed with Branchiootorenal Syndrome, a rare genetic disorder that affects 1 in 40,000 people. BOR itself is not a craniofacial disorder it is an autosomal dominant genetic disorder that includes malformations of the ear and cysts in the neck, hearing loss, and malformations of the kidney.



IMG_0081


As a result of BOR Syndrome, Austin's list of physical challenges also double as medical dictionary tongue twisters: Gastro-esophageal reflux disease, Microtia, Aural Atresia, Hemifacial Microsomia, Macrocephaly, Hypotonia and Tracheotomy, to name a few. These days I rattle them off with ease, I can explain what each one means to ME and how it affects Austin. BOR contributed to Austin's ears not developing, his jaw being so small that his tongue obstructed his airway, and some facial nerve paralysis.

Although Austin’s life would not be possible without a lot of assistive medical technology; he does have a life, a very full life indeed. He is like any typical 23 month old, he enjoys hanging out with his cousins at Disneyland, watches Blue's Clues, plays with blocks & puzzles and reads his favorite books.

While going for doctor visits or having therapists and nurses in his home are common for him, he remains friendly and (mostly) happy to see them. To explain how he lives his life with a Trach, G-tube or Chronic Lung Disease would require a much lengthier story than we have time and space for here, but in all of his struggles Austin has continued surprise us with his utter resilience. You can read the details on his blog.

HE HAS WHAT?

Microtia is an incompletely formed ear. It may be just a small ear, or other variations including having only a bump of tissue at the location where the ear should normally be found. Microtia may occur as an isolated deformity although it typically presents as part of a spectrum of other defects, either minor or major. It occurs more commonly in males and on the right side (unilateral). Approximately 10% may occur on both sides (bilateral) which is Austin’s case.

Aural Atresia is the closing or absence of an ear canal in the middle ear. Microtia and Atresia can occur alone or together. They can also be associated with Hemifacial Microsomia.

Children born with bilateral Microtia/Atresia often require bone-conduction hearing aids within the first few months of life. Austin got his hearing aid at 4.5 months. Although the surgeries to correct this problem used to be started as early as 4 years of age in the past, most surgeons prefer to start the external ear surgeries at about 6 to 7 years of age.

Hemifacial Microsomia is a condition in which the lower half of one side of the face does not grow normally. The most obvious sign of this condition is a partially formed ear or total absence of an ear and partial facial paralysis. The syndrome varies in severity, but always includes the underdevelopment of the ear and the mandible. This is the second most common facial birth defect after clefts.

The jaw abnormality (micrognathia) in children with hemifacial microsomia may range from a small but normally shaped parts of the jaw bone resulting in a mild asymmetry to complete absence of these structures resulting in a more severe jaw deformity. Because of the jaw abnormality these infants may be at risk for breathing and feeding problems and need to be evaluated by a specialist if there are any indications of airway compromise or failure to gain weight. Occasionally a tracheotomy and/or gastrostomy are needed to help with breathing and feeding.

Branchiootorenal (BOR Syndrome): Just like any other syndrome there is not one clear cut case of BOR, it is actually now classified as a spectrum disorder.

The B in BOR refers to the branchial arches, the area of the embryo that develops into the outer and middle ear, the neck and the lower part of the baby's face. There are several types of malformations of the branchial arches in BOR; Austin has auricular pits, which are very small holes about the size of the hole in a pierced ear, just below his ears. Normally these might be found on the neck area.

Oto refers to the ear and in particular the hearing loss that is part of the syndrome. The hearing loss can be sensorineural, conductive or mixed. It can be stable or progressive and the severity can range from mild to profound. Austin has bilateral, severe conductive hearing impairment (70-90dB).

Renal refers to the kidneys which can be abnormal in size, shape and/or structure. They may be smaller than usual or have a malformation that does not interfere with function or cause any symptoms. Austin thankfully does not have any kidney problems at present.

BEYOND THE FACE IS A HEART

Children with craniofacial differences come in many packages, but the one thing all have in common is that there is a living, breathing, feeling person behind those big named syndromes and disorders. These kids are funny, serious, loving, quirky, accepting and enduring. Each should be acknowledged for their own individual talents, as well as, their challenges.

Keep in mind beyond the face is a heart; the person you are staring, gawking or pointing at is someone's much loved child, it may be my son. Consider instead, a smile and a wave.



IMG_0111


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There are many wonderful organizations you can consider supporting. They offer affected families medical treatment or support and resources.

Children's Craniofacial Association (CCAKids)
AmeriFace
Little Baby Face Foundation
FACES: The National Craniofacial Association
Foundation for Faces of Children



Dec 10, 2008

Tiptoeing Through the Tulips

Today we are lucky enough to get to meet Graham through a compilation of thoughts by his mom Cristin Russell at Tiptoeing Through the Tulips.


Tiptoeing Through the Tulips


Before we begin, for those of you who may not understand the significance of tulips and special needs, you absolutely must go here and read Welcome to Holland before you do anything else. I would dare say that this is the general mantra for all special needs moms and dads, and part of the inspiration behind Cristin's blog. Just click here for a clear picture of how it feels to be the parent to a special child.
NOW you're ready to go and you are in for a real treat. I love the way Cristin thinks and writes. As she told me, she can be 'a little crude,' but I left everything in because it's real and honest, and usually very funny. Her words are a delight to read and she and Graham inspire me to just be. I love that. Enjoy!.........




There are a bunch of significant dates in Graham's little life. The day he was born, the day he didn't die, the day he finally came home. And this day stands out; the day we found out he was losing his hearing.

I was so pissed. I don't like surprises. Despite being warned by the entire surgical team that he was at a 'Very high risk for a significant hearing loss' (due to gentamycin and ECMO.... lots of both), I still didn't see it coming. He was at a very high risk for being dead and that didn't happen so....


He'd made it through that scary first winter with several trips to Children's but no admissions. It was Springtime, he was "healthy" and happy. I walked into that audiology appointment fully confident that his hearing was perfect. He was saying a few words, he loved music....


The test was kind of fun. Graham sat on my lap while the audiologist watched his reactions to certain sounds. It was my first test, I didn't know what normal reactions were, so even after the test, I was shocked when the audiologist told me,


"I'm worried about Graham's hearing."


"Really?"


She jumped right into hearing aids, sign language, speech therapy...


"Really?"She handed me The Folder:


As if your child isn't fucked up enough all ready, now he's Deaf.


The folder was full of helpful resources for raising a child with a hearing loss. Educational options, hearing aid providers, sign language classes. I was still too pissed and shocked to absorb any of it. I got out of there as fast as I could.


I was proud of myself for not breaking down until I was alone in the parking garage elevator. I called my sister in law sobbing on the way home,


"But he loves music...he's talking...the damn barking dog wakes him up... WAHHHHHH!!"


I thought about his speech and knew it was true. He could say "Mama" but "Dada" had become "Baba", he'd stopped saying "Nana", things I thought were just normal baby things were happening because he wasn't hearing some sounds.

I got over myself quickly. On the way home I stopped and got a Sign Language dictionary. I started signing with him right away. I started yelling at him and some sounds came back. Speech therapy started within a month and he got his hearing aids that Fall.


I learned about Deaf Culture.


Learning about Deaf Culture and the Deaf Community was comforting. He didn't have to be the scarred up, tube fed kid amongst all the typical kids. He'd be surrounded by kids who were at least Deaf like him, his other differences wouldn't matter. He'd have Deaf adults around him to serve as role models. He'd speak and sign and hopefully have both the Hearing and Deaf worlds open to him.


I think we're doing ok so far. He has Deaf and Hearing friends. His language is pretty funky but his speech is excellent. He knows more sign than I do. He still loves music.


He asks for his hearing aids and tells me when they're not working.


He likes to be Deaf Kid sometimes and not wear his aids.


He's an awesome sleeper.


He's easy to spy on.


He's wicked fun to sneak up on....



Graham started physical therapy around 5 months old. He HATED it. For two years I dragged him in twice a week so he could scream and yell and not do anything the poor PT tried to make him do. I don't want to say that she gave up on him, but she knew she wasn't really helping him and suggested taking him to Gymboree.


I had never thought of it myself. Her reasons were that the atmosphere would be one of play and not work, and maybe if he were allowed to just explore on his own, he would try to crawl, climb, go up stairs...all the stuff she couldn't convince him to do.


He was 2.5 years old when we started. His PT was right. He made more progress in 3 months at Gymboree than he had in two years of physical therapy. His teacher for the first session was amazing. Graham and I both loved her and we all ended up becoming friends and going on play dates together. We loved it so much I signed him up for another session, this time with a different teacher.


Now, there are those who have a very special quality that allows them to work with children. It's a certain kind of patience, a young spirit, a sense of wonder and excitement that allows a person to relate to children. This girl had NONE of these things.


She was awkward and uncomfortable around all the kids and parents. She stumbled over all the stupid songs. She had no clue how to engage a bunch of toddlers in any activity. She flat out sucked.


Graham had obvious issues. He walked funny, he didn't crawl, he didn't climb, he barely talked. After a few weeks, this dipshit of a teacher came up to me and asked;


"So what's wrong with him anyway?"

coolest. kid. ever.


I almost laughed in her face. I mean, I've had a lot people say a lot of dumb things to me about Graham but, What's wrong with him?? I actually felt sorry for her that she thought this was an ok way to ask about a 'special' kid... then I felt bad for her children.... what kind of example was she setting for them?


And now I wonder.... are any of the folks reading this thinking the same thing? I've never really fully explained the kid.


So here goes.


Graham was diagnosed at birth with a Right Sided Congenital Diaphragmatic Hernia (
CDH). A hole in the right side of his diaphragm allowed his liver and intestines to travel up into his chest cavity.


When he was born, he never took a breath because his lungs were being squished by the intruding organs. They tried to intubate and bag him but this was very difficult because his lungs really didn't have room to expand.


He was flown from Burlington Vermont to Boston to be placed on
ECMO. (For you nurses out there; his O2 sat when he got on the plane was 62%, during the flight it went down to 20%, while they were putting him on ECMO it went as low as 8%.... scary eh??)


By the time he got to Boston his lungs were badly damaged due to being bashed against his liver and intestines for over 12 hours. His surgeon said they were a cross between tissue paper and swiss cheese...not good.


ECMO is a heart lung bypass machine that circulates and oxygenates the blood to give the heart and lungs time to rest and heal. It comes with serious risks including brain bleeds and blood clots. Most hospitals will only put a child on ECMO once, some don't use ECMO on CDH babies at all.... something ridiculous about the risks outweighing the benefits.


He was on ECMO for 5 days and he looked good enough to come off.


He got steadily worse for a week, and the radical decision to put him back on was made. We made the decision with the assumption that he would die, but his surgeon had convinced us that no matter what happened, he'd learn something that could possibly help another CDH baby.


Graham had surgery to repair a hole in his lung in the ICU before they put him
back on ECMO. At first they just bypassed his lungs. Within two days he was in heart failure so they went back in and attached the ECMO cannulas very close to his heart, during this procedure they severred a nerve paralysing his vocal chords on the right side.


He spent two more weeks on ECMO. During this time he suffered two brain bleeds, and a blood clot destroyed his left kidney. He had many serious infections requiring massive doses of antibiotics. The antibiotic Gentamicin is responsible for Graham's hearing loss.


Graham left the ICU after 8 weeks and spent another 6 weeks getting bigger and stronger. Because his organs were stretched and his muscle tone so poor, he suffered severe reflux which he was aspirating into his lungs. Had no suck/swallow reflex... he couldn't even suck a pacifier. He aspirated thin and thick liquids when we tried to feed him.


At three months old he had a
Nissen Fundoplication to stop the reflux, had his left kidney removed and had a g-tube placed.


He came
home after 101 days, on meds for seizures (oh yeah... he had some seizure activity while suffering a brain bleed), reflux, and diuretics because he was on so much formula to fatten him up.


His muscle tone was and still is pretty low, hence all the physical therapy.


I started to try to feed him by mouth at around 6 months but it never went well. His oral aversion was so bad that he'd gag at anything that went near his mouth. He's been in feeding therapy since he was around 10 months old. He only started eating last fall.


We learned about his
hearing loss when he was around 15 months old. It started out mild but has progressed to profound.

Graham with his little sis Dottie


So now you're all up to speed.That's what's wrong with him.


Oh, and he still shits his pants.... now that's wrong.



Thank you to Cristin for your willingness to be so open and honest. If the rest of you haven't had enough Cristin, hop over to her blog by clicking here for more fabulous posts. This girl just never stops cracking me up, all the while inspiring me. I don't know how she does it!


Remember to leave a comment and let us know what you learned from Graham and Cristin. And this will also, of course, put yourself into the drawing for this week's giveaway, a PediEgg. I can't believe how much people love these things. Apparently, you really better comment because the PediEgg is heaven for feet.



Cheers!

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