Archive | February, 2013

Real, Fake Eyes

19 Feb

“Never forget that anticipation is an important part of life. Work’s important, family’s important, but without excitement, you have nothing. You’re cheating yourself if you refuse to enjoy what’s coming.” ― Nicholas Sparks, Three Weeks With My Brother

A few days before Oli’s first birthday I woke up after only sleeping a few hours. The big day was finally here. The biggest day! She was getting her first pair of painted prosthetic eyes!

I could hardly contain my excitement. I couldn’t even imagine what she would look like. All of those feelings returned from when I was pregnant and would lie awake at night trying to picture her.

Before she was born I imagined her with big brown puppy dog eyes, long full lashes, and a sparkle that would melt everyone’s heart. Now I was imagining the same thing minus the long lashes and the sparkle. Little did I know how fantastically real, ocularist’s can make fake eyes. That sparkle was there, just painted on.

I rushed everyone through breakfast and we all piled in the car for the trip to L.A.

The drive seemed to take forever. Seth and I passed the time talking about what we each thought she would look like and what color we were going to choose.

“Brown. Or maybe blue. Kekoa has blue eyes. Or green like yours?” I couldn’t make up my mind.

“Blue. Kekoa and Thalia both have blue eyes and her little left eye looks like it is blue.” Seth makes the final decision.

“Blue it is.” I honestly really could have cared less by this point. All of those dreams of big brown eyes were receding from my mind and by the time she was 1 year old I just wanted her to have any kind of eyes. They could have been purple, red, or painted like cat eyes and I would have been absolutely thrilled.

Months and months of staring at blank eyes had made me realize how much I wanted to look at a pair of real looking ones. Although we had shed the ghastly pegs months ago, I was now anxious for the conformers to be painted.

I knew that I would love them, but I had no idea how much the prosthetics would change her whole face and appearance…

IMGP0074
Oli before she got her painted prosthetics.

Fasten Your Seatbelt, This Road May Get Bumpy

19 Feb

funny-mom-quotes-brain-cells-for-kids

It was sometime around this point in Oli’s life that I decided I would learn braille. I mean, why not, right? My daughter was still in diapers, had about 4 teeth, could say one word and had just learned to sit up. Why wouldn’t I want to learn braille so I could start teaching her immediately something that blind kids don’t really learn until they are about 5 years old(give or take-I’m not completely sure because Oli hasn’t even started it yet. So glad I ran that gauntlet 5 YEARS AGO!!).

That picture of the crazy mom at the top of my blog, that is cartoon me. She has blond hair because what suburban house wife/stay at home mom doesn’t picture herself as a smoking hot blond bombshell. Or is that just me? Maybe I watch too much reality TV.

I love how chic it is to say “housewife” now. Much better I say that, than tell people I don’t have a job or tell them I take care of my 3 children…all day…everyday…and I never get out of the house…or put real clothes on. . .or have any friends…

See how she’s holding her head. That’s me totally flabbergasted by this whole crazy, loopy, bumpy path that is the road of a mom with a child with disabilities.

Before I had kids my road looked like this:

road 1

It was smooth, newly paved, no potholes and was 100% safe. I didn’t even need a seat belt.

When I decided to have kids it looked like this:

road 2

Highs and lows, a few tiny pot holes, but I could still see where I was going. There were beautiful flowers by the side of the road and sunsets and rainbows in the distance. (I’ll bet you didn’t know that I am also an artist. I will now add that to my resume of blog writer, magic Q-tip eye ball manipulator, Binky locating expert, and projectile vomit catcher.)

After Oli was born my road started looking like this:

road 3

Most of the time I can’t even see where the hell I am going and have no clue where to turn next. I just bump along, twisting, crashing through potholes the size of Connecticut, and try to avoid the boulders falling on my head. A 5 point restraint race car driver seat belt is required for this road. It gives me a terrible headache. That’s also why I’m holding my head.

And I’m holding it because I get crazy ideas like learning braille when my baby is 8 months old and I run with them full force, balls to the wall. It makes my head spin so I’m trying to hold it on so it doesn’t fly off while my mind is traveling at 500 million miles a minute.

imagesCA5W00WF

I might have a few issues, but I did learn un-contracted braille that year:)

I probably get my neurosis from my mother. She learned un-contracted and contracted braille that same year. Along with the numbers, math, and maybe music? Basically the whole shebang of braille. She was ready to open up her own little braille school and teach all the little blind babies of the greater Las Vegas valley.

Never underestimate the love that my mom has for her grandchildren.

What Do I Know? I’m Only Her Mother.

18 Feb

“Sweater, n.: garment worn by child when its mother is feeling chilly.” ― Ambrose Bierce, The Devil’s Dictionary

After Oli settled down it was time to transfer her to a room on the pediatric floor for an overnight stay. As they wheeled her upstairs I am staring down at my daughter’s beautiful face. My mom calls her a china doll because that’s what her face looks like. Especially when she was a baby and sleeping. Her face was so peaceful. Chubby cheeks, little porcelain nose and a perfectly round head.

The nurse notices me staring at Oli as she settles her into her new room and comments on how beautiful she is.

I know that she is beautiful but I’m a little taken aback by a stranger saying it. I just wasn’t that used to it. She was very beautiful, but because of her eyes most people just didn’t say anything.

“Thank you.” I tell the nurse.

“Let me know if she wakes up and seems like she is in pain. She has some medication ordered for her, but I don’t want to give it unless she absolutely needs it.” the nurse finishes up and leaves the room.

I was thinking “Oh good. This nurse won’t make her wait forever when she is hurting.” I breathed a sigh of relief and settled onto the chair to watch TV.

A little while later Oli wakes up crying. I pushed the nurse call button and tried to comfort her as I waited. The doctor had warned me that she might be a little more uncomfortable because he didn’t put in a G-tube so there was no way for gas to escape. Because the top part of her stomach was now wrapped around the bottom part of her esophagus (a fundoplication) she could no longer throw up, but she also could no longer burp. The doctor told me that if the pain the reflux was causing her was worse than the gas pain then it wouldn’t be too bad for her and she would adjust quickly.

Looking down at her now, I started questioning my decision not to put in a G-tube.

The nurse finally comes back into the room and has to raise her voice above Oli’s wailing. “Yes?”

“Yeah, I think she needs some of that magic juice ordered for her. I think she is in pain.”

“Oh I think she’s okay. She’s probably just hungry.”

I stare at her incredulously. Ummmm, no. I think I know her. First of all I have taken care of this little person while she lived INSIDE my body for 9 months and second of all I have taken care of her OUTSIDE my body for 7 months. That is 16 months 17 days 10 hours and 15 minutes longer than you have taken care of her. Besides, I think by now I know the difference between a cry of pain and one of hunger.

“No. She’s not okay. You need to give her some medicine.”

The nurse gives me a disproving look and then leaves to get the medication.

I couldn’t believe that she was actually going to argue with me!

She came back in the room and gave her the medication. Throughout Oli’s 2 day stay this was an ongoing fight with this nurse. I’m not sure what the problem was?

By the next morning Oli was much better and didn’t seem to be in pain at all. I got to feed her Pedialyte first which she inhaled (as much as I would let her. I had to be careful that she didn’t suck in too much air). Then once she was tolerating her formula we took her home.

The surgery was a success and I was so happy that Oli was feeling better. The doctor was right. The gas pains didn’t seem to bother her at all. The only downside is when she gets the flu she isn’t able to throw up unless the pressure is very great. So instead of feeling crappy and just barfing everywhere and feeling better she dry heaves for hours. It’s no fun for her.

As for the nurses I’m not sure what the problem was. They really should learn to trust parents and understand that they know their children. I didn’t want my baby doped up either but I knew that she was hurting and isn’t that what the medication is for?

Somehow being just a parent is equivalent to being stupid in some doctor and nurses eyes despite your credentials. What do I know? I am just her mother.

Even though I have not eaten, slept, or breathed, unless she has first, from the moment she was born. I can’t possibly know more than someone who has met her. . .once. . .for 15 minutes. . .and can’t remember if she is a boy or a girl. . .

images 1

My Special Needs Mother Hat

18 Feb

“A woman is like a tea bag; you never know how strong it is until it’s in hot water.”
― Eleanor Roosevelt

I talk a lot about my journey to obtain my special needs mother hat. I don’t know why I use this term. I guess it just gives me a good descriptive picture in my head and explains a major role I play.

To me, this hat looks different than a mother hat. My mother hat fit well the first time I put it on. It was easy to wear, simple, elegant, and light. It was beautiful from the beginning and did not tear easily. When it did, I could take it off at night and stitch up any holes it acquired during the day. My stitching was never loose, came apart or was crooked. It always came back together nicely. It rarely fell off and never seemed heavy. I was proud to wear it and frequently showed it off. I enjoyed this new hat tremendously and was very reluctant to turn it in for my special needs mother hat.

When I got this hat it was WAY too big. It fell off all of the time. Sometimes it just blew right off my head. In the beginning I forgot that I had it and a big gust of wind would come along and POOF! Gone. I would have to go chasing it down the street. Sometimes I threw it to the floor in a moment of rage, frustration, or grief. And sometimes I just tried to leave it on the counter at home. I tried to pretend that I didn’t have it and that it wasn’t sitting there waiting to adorn my head like a 1000lb weight. It was extremely heavy. It had all kinds of straps, buckles, and ties attached to it that I couldn’t figure out. It had random flowers on it with names that I couldn’t pronounce. It was uncomfortable and became worn out looking. Rips and tears began to decorate the sides and no matter how hard I tried to stitch it up, my stitching never fixed the holes. They were loose, crooked and simply came apart by an unexpected tug in the wrong way. The whole hat would just fall apart. I would carry my hat in pieces back home and painstakingly try to put it all back together. At first it seemed destined to be big, ugly, uncomfortable, and prone to making me feel like an outsider. It seemed nobody had a hat that looked like mine.

After I wore it for a while, I began to notice other mothers whose hats looked like mine. They were worn and tattered, but had been repaired with beautiful hand crafted stitching and appeared loved and cherished. These mothers looked at me in my hat and smiled a knowing smile and pointed to their heads. “See. I’m proud of my hat. It may appear complicated and worn out to you, but to me it’s beautiful. Your hat will be beautiful too one day.”

Slowly I began to notice new things about this hat that I hated at first. I was learning to pronounce the names of the flowers on it and figuring out the buckles and straps. It wasn’t so big anymore and no longer blew unexpectedly off my head. It began to fit better as each day I grew a little more confident in my role. Every once in a while I still throw it to the floor, but now my reasons are different. It still gets ripped and torn, but I am learning to sew it back up and now my stitches hold it together. It doesn’t fall apart so easily and my stitches are straighter and stronger. I’ve learned to love each and every rip, tear, crease, and stain on my hat because each one has a story. A moment in time and a memory of where I have been and what I have gone through. It isn’t so uncomfortable now and it doesn’t make me feel like an outsider. Now it makes me feel like part of a group. A group of mothers with special hats and special roles that we love and feel honored to have. Now I’m not ashamed of my hat and I never try to forget it on the counter. I walk out of my house each day with my head held up high. Proud to show off my journey with my special needs mother hat.

Total Mommy Meltdown

17 Feb

“There’s no bitch on earth like a mother frightened for her kids.”

― Stephen King

Finally after what seemed like hours of waiting in those little blue plastic chairs and watching cartoons on the Disney channel in the kids play room, the nurse called my name from the doorway.

“You can go back and see your daughter now. She’s awake, but we just got her into the recovery room. Normally I wait to bring families back until the kids have been there a little while, but since you work here I made an exception.”

I thanked her profusely for letting me go back early, but then was wishing she had waited a little bit longer as I rounded the corner and could hear Oli screaming at the top of her lungs from the end of the room.

I quickened my pace to get to her bedside and then looked at the recovery room nurse as she straightened out cords and tried to get her connected to the monitors.

“Aren’t you going to give her some pain medication?” I ask the obvious question when ones child has had surgery and then is screaming like they are still slicing off some major body part.

“Yes I’ll get her something in a minute.”

In a minute? Can’t you hear her pain? This purple color is not the normal hue of my daughter’s face.

I know what it’s like to be the nurse and have anxious parents breathing down my neck, but come on lady. I understand that you are busy and it is obviously important that you straighten out these cords (for some reason unknown to me), but give her something. I think she might be dying.

She finally untangles the last knot in the stream of medical cords and saunters off to get Oli pain medication.

By the time she came back I don’t think I had ever seen Oli quite the color that her face was now. I had no idea, until that moment, that human skin could turn that color. Her face had a kind of red, purplish tint that only the truly pissed off baby can become.

Now I am quite familiar with it. Now I know that when Oli turns that color I better get the hell out of her way in about 10 seconds because she may spontaneously combust. Or try to bite, scratch or beat me to death. Good thing my peanut is only 40lbs soaking wet and has yet to actually hurt me. ( She is usually very sweet. I promise… Except when she’s not. )

The nurse gave her some medicine and Oli eventually quieted down and went to sleep.

“This is normal. Sometimes children have that kind of reaction to the anesthesia. She should be better after a little while.” The obsessive compulsive nurse tells me.

“Okay.” I am thinking yes, I realize that, but it does not give me any comfort because I am watching my baby have a total and complete meltdown and therefore am well on my way to total meltdown phase myself. Watching her scream louder than I have ever heard her scream does not in any way feel “normal” to me.

However, thank you for trying to reassure me.

I don’t feel any better.

Airing Out My Bitchies

16 Feb

Today I am tired of trying to be upbeat and optimistic. Although I usually am (or at least try to pretend to be) most days because it just feels better, today I am not. Today I am gloomy Mcgloomster and I don’t want to pretend or try. I was going to FB about it, but then I thought “Shit. Isn’t this what the blog is for? Letting my bitchiness all hang out.”

I think my morning started off badly when my demon child, lovely 2yr old daughter, woke me up at 5:45am by jumping on my head screeching at volume 1,000 “MOOOOMMY! I’M DONE SLEEEEEPIIIINNNGGG!”

I will now need to add search for hearing aids on my list of To Do’s today.

After begging, pleading, bargaining, yelling, and cursing at her to please go back to bed until at least 6:45, I pouted and reluctantly stomped down stairs. She didn’t hear any of my pleas because apparently when she realized mommy was in a bad mood she high-tailed it to her happy place. I found her sitting in her favorite spot. Inside the TV. Girlfriend could not possible sit any closer to the thing if she tried.

After turning on Mickey Mouse (good thing that crap comes on early) I made coffee and proceeded to drink somewhere between 3 and 10 cups. I lost track after my 3rd trip to the bathroom. It’s my own fault for staying up so late. I seem to have developed an unhealthy obsession with shows about the paranormal. Apparently I am not the only one because every month Syfy, the Travel Channel, Bio, and every other channel on cable has added a new ghost show to their repertoire. Last night it was Ghost Adventures and The Dead Files.

This stuff is serious….and I am fascinated. It drives my husband bonkers. Sorry honey. It’s a hobby? Of course I can’t watch anything during the day so I am forced to stay up late into the night scaring the crap out of myself. See Ginger? The reason mommy is in a bad mood is because you force me to watch ghost shows at night.

After spending some quality time on Facebook I decided that I needed to get out of the house. Air out my bitchies. My mom came over and we took the three kids to the park. It was good and I felt better. Oli had fun driving her little swivel car. Ginger and Koa ran around screaming and throwing sand. I decided to take Oli down the slide. It sounded like a good idea until I turned around and discovered two other children had also decided to go down the slide.

My immediate thought was “Children, please don’t say anything stupid to me about Oli because I’m just not in the mood for lovely flower and cupcake responses.” Kids are always asking questions about Oli. Usually they are just curious. Sometimes they’re mean, but that doesn’t happen very often. Today, I just didn’t want to deal with it. I can’t remember the last time I went to the park with Oli and someone didn’t ask questions about her.

Why doesn’t she talk? Why doesn’t she walk? What’s wrong with her eyes? Is she a baby?

Normally I just tell them that God made her different and that she is blind. I’m nice and friendly. Honestly I would much rather have them ask me questions than just stare at her. Today I was just tired. I just wanted to be able to have fun at the park with her with other kids around and not have to answer questions.

So when the little girl came up to me and asked why she doesn’t talk I just responded “She just can’t.” I did smile, but then turned my back and walked away with Oli.

I feel bad. I really do. But, today I just couldn’t do it.

Today I am tired. And today I am tired of the questions and stares.

Please Don’t Let Her Arm Fall Off

16 Feb

“Sometimes beautiful things come into our lives out of nowhere. We can’t always understand them, but we have to trust in them. I know you want to question everything, but sometimes it pays to just have a little faith.”
― Lauren Kate, Torment

Fortunately because my two small children were in the car with us that cold day in January it ensured that my husband’s enthusiasm for an adventure took a back seat. We made it to Oli’s surgery appointment unscathed, unstuck and virtually un-traumatized.

It was scary riding with a driver who was unfamiliar driving in the snow on gravel roads in the middle of the desert, but Seth was cautious. We got to the hospital 2 hours late to her appointment. I had gotten a hold of the surgeon when we realized that we were going to be late and she told us to go ahead and come whenever we could.

They prepped Oli for surgery and the nurses whisked my baby girl off to the operating room shortly afterwards. We were assured that Oli was in good hands and were sent to the waiting room.

I had never been the parent of a patient before Oli was born. One time I had to take Kekoa to the ER when he was 4 months old because of a high fever. We were only there long enough to make sure he didn’t have an infection and then left.

This was nothing like that.

I knew they were going to be cutting into my baby, however minor the operation was.

THEY WERE GOING TO CUT INTO MY BABY!!!

I had been involved in lots of surgeries with babies before Oli, but none was my child. My heart went out to all of the parents who had sat in those little plastic chairs before me.The parents that I myself, had sent to the waiting room when I was the nurse on duty the day of their child’s surgery. Many times I spoke the exact same words spoken to me that morning, “She’s in good hands. Everything will be fine.”

Of course there are no guarantees. I knew that. I was terrified.

The few hours it took to perform the operation and get Oli into the recovery area were some of the longest hours of my life. Oli has had a few other surgeries since then and it never gets any easier.

Remember I am a worst-case-scenario girl.

I worry about everything from a complete power failure when my girl is still on the ventilator and unconscious down to worrying that the nurse didn’t properly swab her IV port before injecting medication into it and subsequently she gets a terrible bacterial infection and her arm falls off.

imagesCA2CPZPC

It’s awful!

Luckily none of those things has ever happened.

I want to trust people taking care of Oli. I really do. Most of me has to or else I would drive myself crazy, but this is my baby girl. I can’t trust them completely. I don’t think any mother ever does.

Moms worry about our children the moment we realize we are having them. It’s not any more difficult, I don’t think, when you have a child with special needs. We are just given more opportunities to worry. And we are given more opportunities to trust people and have a little faith in them. Sometimes they let you down, but most of the time they don’t.

Most of the time my imagination is far worse than reality.

Good thing!! Otherwise my girl would defiantly be missing a few limbs by now.

A Chance To Go Back In Time

15 Feb

I wonder if they will ever invent a way to travel back in time? If they do, there are a few moments that I wish to revisit and appreciate a little more.

I would like to go back to my wedding day. Not so much to just relive that moment, although it was wonderful, but more to go back and see my grandmother again. I was such a bitch that weekend. It was all about me and I didn’t spend enough time with her. She flew all the way from Iowa to Hawaii to see her first granddaughter get married even though she was dying. I wish I could go back and realize how short her time here really was. I thought, Oh I’ll see her again in a few months. I don’t need to go check on her in her room or have dinner with her tonight….Selfishly I let these moments slip by.

She died a few weeks after my wedding.

I would like to go back to the days when Oli was a baby. I cannot believe I actually just said that! I used to say you couldn’t pay me a million dollars to return to those days. But here I am saying it.

I have come to realize that something happened or changed in Oli after she turned one. She seemed normal as a baby. No head shaking, no flapping, she babbled and was interested in other people. Other than her blindness, she was typical. I was so distraught and terrified that I didn’t appreciate that she was okay. She was okay back then. She’s okay now, but it’s different.

I just watched a video of her yesterday from when she was about 6 months old. She was playing in her bouncy seat. I almost couldn’t watch it. I had an inexplicable urge to reach through the TV and scoop her up and transport her to now. Avoiding whatever it may have been that caused her autism. Whatever connection that she lost or was broken between then and now.
My family will mention to me lots of times that they just don’t understand why she stopped talking and why she started shaking her head, flapping her arms, and having extreme meltdowns. They will say things like “Remember when Oli said _____?” And then look at me like I can somehow offer them a reasonable explanation for the change in my child.

I can only look back at them with my own expression of bewilderment and shake my head. I don’t know why, but I do remember those days. Some of those memories are starting to fade. Much like when my grandmother died. I have a harder and harder time recalling her face and voice as the years pass. Seeing a picture of her brings it flooding back. Watching that video of Oli yesterday did just that.

Yes, now I remember when she said mamma, milk, juice, out…. I remember when I used to do something to make her giggle and could snap a picture of her and it didn’t just show a blur of movement. I remember when she used to try and hold a spoon and feed herself, when I could keep her engaged and she showed interest in things outside her body….. I do remember all of those things. Even when sometimes I don’t want to because it’s just too painful.

I hope they invent a time machine some day because I would also love to go back and knock some sense into my head. “Stop feeling sorry for yourself and pay attention to all that your daughter can do. Because some of those things will fade away…”

An Adventure With Seth

15 Feb

imagesCA588LI2

The morning of Oli’s fundoplication surgery (reflux surgery) I awoke in the darkness. I turn over and glance at the clock.

Uggghhh…4am. We had to be at the hospital by 6:30 and it was an hour drive. I shook Seth awake and then got into the shower. A few minutes after I got in Seth knocked on the door.

“You’re not going to believe this Shannon. There was a snow storm last night.”

“What?” Snow in Las Vegas. Sounds like no big deal right? The first time I saw flurries in the desert I laughed that they would even have the nerve to call the slightly thicker rain drops “snow”. That wasn’t snow. These people had never been to Iowa. I had about the same amount of trust in my husband and his knowledge of snow as I had in the people of Las Vegas. He was from Hawaii.

I knew that it was probably just cold and raining. At most it might look like snow falling from the sky, but would melt once it hit the ground. We were in no danger of missing my daughter’s surgery appointment. I forgot that in order to get to the appointment we had to drive over the “pass”.

Pahrump sat higher than Las Vegas and in order to get there we had to drive over a mountain at 9,700 feet elevation called the pass.

As we left the house I wondered if we really were going to make it. Snow was actually sticking to the ground. I had heard when we moved to Pahrump that the pass occasionally closed when it snowed up there, but that it only happened maybe once a year. Surely it wouldn’t be closed the one day that we absolutely had to get to Vegas. Surely our luck wasn’t that bad.

It was.

As soon as we reached the base of the mountain I could see police lights directing people to turn around and go back.

I looked over at Seth who was driving. “What now? It’s going to take a month at least, to get another surgery appointment.”

“We’re going. I will get her to this appointment.” He says with determination and a look of excitement in his eyes.

Oh no. I’ve seen that look before. That look that comes from a man who loves off-roading and driving through the back desert.

“Are you serious? The gravel roads are going to be bad. I think we should just call and cancel.”

“Nope. Don’t worry. I’ll get us there. No problem.”

I am very worried.

Seth likes a good adventure and his adventures usually end up with us being stuck somewhere. I have been on many of these “adventures” with him. I have been stuck in the desert overnight, in the mud, with nothing to drink but cheap beer and coyotes circling us looking at my little dog like a quick and easy meal. I have been stuck 5 miles from the lake, with a flat tire and no jack, no one around for miles, for hours in 110 degree heat, with nothing to drink but cheap beer. Don’t worry. We always had beer.

These are just a few examples. Others include motorcycle trips in freezing weather and extreme heat when I have been totally convinced I was going to die.

I know Seth’s idea of an adventure.

This could end badly.

Getting Rid Of The Reflux

14 Feb

“While we try to teach our children all about life, our children teach us what life is all about.”

― Angela Schwindt

Finally when Oli was 7 months old we made the decision to surgically fix her GI reflux.

I could no longer watch her struggle to keep her food down. Despite thickening her formula, a strict regimen of reflux medication and eating baby food, the reflux was not improving.

We had to wait several months before making this decision because she didn’t fit into her GI doctors normal category of surgical patients. She was still gaining weight, growing, was at that time still sleeping, and was not screaming most hours of the day. The exact opposite of most of his patients.

He kept putting off the idea of surgical intervention until one day when I brought Oli in for her monthly check up.

“How is she doing?” He asks quietly. He was a tall, gentle, soft spoken man with an awkward personality.

“Well not to good. This cannot be normal.” I tell him. Frustrated with her lack of response to his treatments, my goal today is to show him how miserable it was for her. I laid Oli face down on the crisp, white exam paper.

“Now just watch.” I say as I encourage Oli to lift her head. This was an ongoing struggle for her because of her lack of visual motivation,. But also because every time she exerted any abdominal force whatever was in her stomach seemed to become pressurized and shot out her nose. As he is looking down at Oli she performs right on cue. A thick stream of chunky old milk, tinted green from her lunch comes out her nose.

“This happens every single time I put her on her tummy. You have to do something.”

“Yes okay. I guess it’s time to look into surgery.” He relents.

“Great. I know a pediatric general surgeon who I’m comfortable with. I’d like him to perform the surgery because I know he won’t put in a G-tube unless she absolutely needs it. I don’t think she needs one and he agrees.”

A few weeks later Oli had the surgery. She did not need the G-tube. I was happy that I had found a doctor willing to listen to me and not just put one in, as was the general practice.

One week after the surgery she began sitting up and was finally comfortable lying on her tummy.

thecrumbdiaries

Logan is challenged but not limited, and he is living his life like a boss. I am just lucky enough to be along for the ride.

Mommy Got Her Groove Back

How a new mom, and wife does parenting and daily life.

Lessons from my daughter

Although all doctors agreed she would do nothing.....

I'm fine, but my Mommy has issues!

Raising a daughter with special needs.

Living on the Spectrum: The Connor Chronicles

Our family's adventures in the world of ADHD and Autism.

Parenting And Stuff

Not a "how to be a great parent" blog

don of all trades

Master of none...

The Third Glance

A peek into my (Autistic) mind

One Stitch At A Time

Making my way back in time.

Disability Watchdog

Exposing Injustices for Vulnerable People

My thoughts on a page.

Living, Laughing, Loving, Loathing.

It is Well...with my Soul

Sure, my hands are full. So is my HEART!

Chopping Potatoes

And other metaphors for motherhood

This is the Corner We Pee In

Bulletins from the Parenting Trenches...

clotildajamcracker

The wacky stories of a crazy lady.

This is the place

visiting places where writers were born, lived, loved & are buried.

motherslittlesteps.co.uk/

Motherhood and Country-Coastal Living

My Dance in the Rain

The journey of my life, my path to redefine myself and a special little girl with Cri du Chat Syndrome and Primary Ciliary Dyskenisia who changed it all.

Prego and the Loon

Pregnant and Dealing With Domestic Violence

%d bloggers like this: