Monday, June 29th, 2009

I have always been the type to bounce right back and today was no exception - my tummy was right back to normal today. Good thing - because it was a busy day. First, Sherry came out from the nursing agency to do her 30 day check in and fill out paperwork. I had just woken up from my nap so I wanted to hang on Mommy's lap for the first few minutes. A few hours later I got another visit from my physical therapist, Michael. It had been several months since he had seen me. Since he had tried to get me crawling for a year - I was proud to show him my new skill - over and over and over again. He also checked out my left foot and agreed with my occupational therapist that I probably need to wear orthotics. So my pediatrician is going to work on getting us a referral to a podiatrist so they can fit me for them. It was a busy day but I was feeling so much better that I didn't mind all the excitement one bit. Mommy was just glad to get through a day without having to change clothes.

Peyton Nicole Smith

Sunday, June 28th, 2009

Sorry, no photos today. Unfortunately, I caught some type of stomach bug and as is always the case - Mommy was the recipient! By late afternoon I was able to keep down a little Pedialite and then on to 1/2 Pedialite and 1/2 formula by tube. Meanwhile, I was eating a little bit of rice rusk cracker while sipping vanilla soy milk. Tomorrow Mommy will try to get me back up to full formula feedings if I am holding everything down. Despite the sick tummy I was running around the house playing and (relatively) happy most of the afternoon.

Peyton Nicole Smith

Saturday, June 27th, 2009

It was a day for playing inside because it was 105 degrees outside. Mommy put me in my skirt for a little dancing time. Mommy and Daddy braved the afternoon heat while I stayed home with Sarah. They had just become Costco members and had to make a run for supplies. $300 later they had a lot of a few items like diapers, wipes, dog food, paper towels and toilet paper. Then the challenge became where to put everything. Mommy took me to the grocery store to get me out of Daddy's way while he organized. When we returned everything was in it's place - he did a great job!

Peyton Nicole Smith

Friday, June 26th, 2009

Did you notice the new widget at the top right hand corner of my blog. Click on the button that says "new word" and set your speed and then try to figure out the word that is being finger spelled in ASL. I challenge you all to try it out and see how hard it really is!

Peyton Nicole Smith

Thursday, June 25th, 2009

About 2 am every morning, I like to sit up in bed, look at my nurse and then fall over onto my face and fall asleep. This morning, I decided I wanted to get up and play. I even started gathering all my items together - my lovie, my baby and my stuffed dog. Nicole tried to convince me that it was too early to get up but eventually she negotiated a truce. I had to stay in bed but she would sit by my crib and rub my back until I fell asleep. I don't think she had any idea it would take an hour! But I was awake bright and early at 6 am as usual!

Peyton Nicole Smith

Wednesday, June 24th, 2009

It has taken us months to get in for an appointment at the trach clinic at UC Davis but it finally happened today. While we were waiting for a room, I got the chance to watch two groups of adults communciating entirely in sign language. I was fascinated! It was like being at a tennis match as my head would turn from one conversation to the other - back and forth - back and forth. Mommy was overwhelmed with how fast they were "talking" to each other - she couldn't pick out any signs at all!

Although the clinic had told Mommy I was running on time, it took almost a half hour after my appointment time to get into a room. Then another 45 minutes went by before the doctor arrived. Apparently, he had skipped our room accidentally and seen another patient ahead of us. Mommy was pretty irritated by that point because I was starting to become a little monster locked up in a small exam room with nothing I could touch!

When he did arrive he made pretty short work of it - looking at my mouth and telling Mommy to come back again in four months. Mommy doesn't even remember him checking out my trach stoma. But he did send over a referral so we could get my CT scan for Stanford at UC Davis so we wouldn't have to travel as far - so Mommy wasn't prepared to do much complaining!

So after waking up at 5 am I didn't get down for my first nap of the day until almost 1:30! I was pretty mellow on the car ride home and even played in my crib a few minutes but when I finally fell asleep Mommy knew there was no way she was going to be able to wake me up at 2 pm for feeding therapy so she had to call and cancel the appointment.

Peyton Nicole Smith

Tuesday, June 23rd, 2009

I have never been monitored by a pulmonologist before but my Mommy thought it would be a good idea to have me checked out. Although I don't have any lung issues (that we know of) for many kids with trachs, the pulmonologist is the one who coordinates getting the trach out. Dr Perez was great - I really liked her and so did Mommy. After Mommy explained how they ended up in her office, Dr Perez let her know they were doing a great job taking care of me and my trach. She would like to see me once or twice a year until my trach comes out. Since that will for several years from now at the earliest, we'll have plenty of chances to see her again.

Peyton Nicole Smith

Monday, June 22nd, 2009

The month of July was already looking pretty stressful. Mommy will be out of town most of the month for work training, Daddy had been called to jury duty for July and we don't know if he will get excused, Daddy has inventory at work and then tonight we got even more good news. My night nurse called in sick Sunday night and when she came to work today she let my parents know that she will no longer be working for us. She is giving a month's notice (thank goodness!) but the night shift is too difficult for her to find a good reliable babysitter for her son. Mommy has decided she doesn't have the energy to do her normal freaking out. With so much notice, hopefully the agency will find a replacement and there won't be any nights Daddy has to stay up with me while Mommy is out of town.

Peyton Nicole Smith

Sunday, June 21st, 2009

In honor of Daddy's Day it was off to Manteca and the Bass Pro Shop! It was almost as good as Cabela's but not as many stuffed dead animals. I really liked the fish tank though! While Daddy looked at all the gun accessories, Mommy and I wandered the aisles looking at camo onesies, large stuffed fish pillows that were twice as big as me and everything in between. I was happy as could be exploring and one older man could be heard saying as he walked by, "She's just a little doll, isn't she?" After charming everyone at Bass Pro Shop I was wiped and when we got home I took a short nap while Mommy got some takeout from Outback for her and Daddy. It was the most relaxing dinner they had had in quite some time : )

Happy Daddy's Day to my most incredible Daddy. He got lots of nice presents and cards from friends and family and he was very appreciative. I know everyone thinks their Daddy is the absolute best but there isn't a doubt in my mind that I am right!

Peyton Nicole Smith

Saturday, June 20th, 2009

As if I hadn't had enough of my fill of dentists earlier in the week, my parents took me to a new dentist this morning. Dr Saladine and his office are great, though. They were able to get much better xrays of my teeth and it was easy to see that there was nerve damage so root canals and crowns are in order. I have a couple other strange things going on in my mouth - an extra tooth on the top (right where Mommy's was) and a few fused teeth (where two teeth come in fused together). As long as my cardiologist cleared me for IV sedation, Dr Saladine was on board. But as we were getting ready to leave the receptionist told my parents that the anethesiologist Dr Miller will only give IV sedation to patients 25 pounds or over. Since I am 20 pounds and that is with the cast, she doesn't think he'll agree to it. They are going to get back to my parents on Monday about that. Our last option is to have the work done under IV sedation at the hospital but because Dr Saladine isn't able to admit to the hospital, it will have to be done by the dentist at the hospital instead. My parents are okay with that because once the crowns are taken care of, Dr Saladine will be my dentist going forward and eventually if I need further work under anethesia I will probably meet the weight limit and then it can happen in the office. After all that fun, it probably isn't a big suprise that I fell asleep on the car ride home - holding the balloon they gave me for being such a big girl!

When I woke up, my parents kept an earlier promise and took me to the park to play. They brought lots of bread to feed all the ducks. Once the bread was gone we strolled around the pond and ran into a squirrel. Since we were out of bread, Mommy got into my diaper bag and found the Gerber stars that I like to eat and we threw those to him instead. He didn't seem to mind one bit!

When we made it home, Mommy pulled out the sugar free sucker that the dentist sent us home with. Although I have only had a suckers a few times in my life, I hadn't forgotten what to do with it as you can see!

Despite the dental visit it was a really good day.

Peyton Nicole Smith

Friday, June 19th, 2009

Mommy and I went to a local store that buys and sells used clothing and other items for babies and kids. While Mommy was checking out what they had, I was busy playing with the baby swings. I would pull the swing up as high as I could and then let it go so it would swing. With my cast, it was hard to get it very high but I was determined! When it came time to go, I was unwilling (that's a nice way of saying I threw a fit). But I had a stinky diaper by that point and for the sake of all the other customers, it was time to leave. As we were checking out, I calmed down enough that when Mommy saw a fun toy with little doors that had magnetic items behind it - she went ahead and got it for me. It was a good choice because it kept me entertained for at least 1/2 hour tonight while I was getting my last tube feeding - and toys that keep me busy for that long are few and far between at this point in my life!

Peyton Nicole Smith

Thursday, June 18th, 2009

By the way, did I tell you that I can now officially crawl? I don't do it often or for a long distance but Mommy can check that one off the developmental list. Better late than never, right?

So my parents weren't feeling so good about wrapping me up tight and holding me down to have my dental work done. Mommy just so happened to have a dental appointment herself today so she asked her dentist if he had a pediatric dentist that he could refer us to. So Mommy got a name and number and we will be going to see the dentist on Saturday morning (yes Saturday hours, isn't that cool!). I definately don't want anyone else poking in my mouth but I'll put up with it if it makes my parents feel better.

Peyton Nicole Smith

Wednesday, June 17th, 2009

Although I have seen several dentists in conjunction with the craniofacial panels at UC Davis and Stanford, I have never officially been to the dentist. About a year ago, one of the dentists on a panel told my parents that the discoloration they were seeing in my front teeth were probably due to my Mommy getting sick during pregnancy and the teeth had been effected in utero. As the last year has passed, though, the teeth have are getting more yellow and my Daddy was convinced it was something more. When my feeding therapist noticed that I acted like it was painful to eat at times, she suggested going to a pediatric dentist in the area to get it checked out. So today was that appointment. Now, Mommy already figured it would be a little stressful since I don't like people in my mouth and don't really like the toothbrush either.

When Dr. Jan came in and looked at my mouth Mommy explained what she had been told. Dr. Jan looked at Mommy like she was crazy and said, "Those are cavities. Really big cavities!" So apparently that discoloration thing wasn't what was going on - at least not in my mouth. Over the next hour it was a lot of me being held down - to get xrays, to get photos and to get an exam. I'd like to say I took it like a "man" but I cried and fought the whole time. But after all the tears they let me have as many toys as I wanted from the toy bin and sent me home with lots of new toothbrushes to try.

Had my parents come in a year ago when they first noticed the cavities it would not have been to big a deal to get them taken care of. At this point, it's going to be a little more involved to get me all fixed up. My top three teeth in the front all have very big cavities and Dr. Jan says I need root canals and crowns. I also have a smaller cavity on a tooth on the bottom that will need a filling. Since I am so little and have a heart condition, Dr. Jan doesn't want to risk sedating me so for the hour it will take to get all of that done, they are going to wrap me up really tight in a blanket and get er done! Now they did tell Mommy they might have some sedatives to offer her when she is holding me through the procedure and she might take them up on it ; )

Tonight when it came time to brush my teeth, my parents tried using a new brush that we got today from Dr. Jan. I was willing to brush my own teeth much more tonight than usual and then my Daddy had to get in there and get the rest really good. I wasn't too happy about it but within moments of finishing I took the toothbrush back from Daddy and took it to bed with me. There I spent some more time brushing my own teeth and brushed my baby's teeth for good measure.

Peyton Nicole Smith

Wednesday, June 17th, 2009

A note from Mommy:

At this stage in her life, Peyton is blissfully unaware of her differences as compared to other children. But there will soon come a time that either she realizes it on her own or someone points it out to her. Lots of people in the medical community have given us the advice to take her home and treat her like any other kid but the reality is that even if we may treat her that way the rest of society may not. When I read the original article in the Boston Globe last year about how this little girl was getting to dance I was so thrilled to think that a child with her medical complexities was allowed to be just that - a little girl. But reading the follow up article I can't help but feel disheartened that she hasn't quite found her happily ever after. I have no doubt we will experience similar situations with Peyton as she gets older and wants to participate in all that life has to offer - I only hope that Peyton finds a community of people who are willing to overlook all that makes her "special" and see instead a little girl who will just want to be like everyone else.


WEST NEWTON - It is one of the most memorable images ever to have graced our pages.

A little girl stands in a drab hallway, feet in a ballet pose, arms outstretched, face turned up. Long plastic tubes run from a ventilator to a trach in her neck, but she doesn’t see them. Her eyes are closed with joy. Jessica Leahy is dancing.

The award-winning photograph was part of a Globe story on children living with ventilators, and Jessica, born with a rare nerve disorder, was really living: When her picture appeared on our front page about a year ago, she had just finished a semester’s ballet classes at a Newton dance school. She was in heaven at the Joanne Langione Dance Center, disconnected from the tubes, twirling with the other kids. The 6-year-old announced she would be a ballerina when she grew up.

When Jessica was born, doctors told her mother, Julie, she may never walk or communicate or eat normally. But for seven years, miracles have piled up, and Jessica does all of those things. With a nurse’s help, she attends an ordinary elementary school. At ballet, her mother sat outside the classroom in case her tube needed suctioning, and paid for private lessons to help her keep up with the other children. Jessica was thriving.

“I always tell her she can do anything,’’ Julie said, sitting in her kitchen earlier this week.
But it turns out Julie Leahy can’t always make good on her word. When she tried to sign Jessica up for ballet classes again this year, the school told her she couldn’t come back. After six months teaching Jessica, instructors said they weren’t trained to deal with her challenges, that they were worried she would injure herself. Julie assured them Jessica’s trach wouldn’t come out, even if she fell. She offered to sit inside the classroom to make sure her daughter was safe. The school said none of that would work.

“We don’t want to put Jessica at risk,’’ Joanne Langione told me this week. “I wish I could accommodate Jessica and little children like her, but the program we offer is very demanding. We’re heartbroken over it.’’

So Langione knows better than Jessica’s own mother? Julie wonders if other parents complained about Jessica slowing their children down. Or maybe the school was afraid of being sued, even though she would gladly sign an agreement freeing them of responsibility. But then she realized: “If they don’t want her, why would we ever go back?’’

Instead, she tried a different school. But Jessica couldn’t handle the fast-paced hip-hop and jazz that came with the ballet. So her mother tried the Boston Ballet school. They couldn’t take Jessica, though they told Julie they’d like to start a program for kids like hers.
The problem is, there aren’t a lot of kids like Jessica. She has Moebius syndrome, a rare combination of challenges.

“Where do we fit in?’’ her mother asked. “Do we always have to find a special needs program every time she wants to do something?’’

Jessica should fit in everywhere. We talk a good game about embracing people with disabilities. Doing it is clearly much too hard for many of us, especially when someone’s challenges are unfamiliar. Julie Leahy keeps pushing.

On Monday afternoon, Jessica was in her living room, dancing again, her hands fluttering. Her mother had called another ballet school, and they said they’d take Jessica. Julie wasn’t sure if she should mention this new possibility. She didn’t want Jessica to be disappointed if they changed their minds. But the first class was coming up.

“We’re going to that new school tomorrow,’’ Julie told her. Jessica clasped her hands above her head and yelled “Yaaaaay!’’ Watching her - twirling, jumping, utterly unselfconscious - you’re filled with joy and trepidation, and an overwhelming desire to put the Dance Center of Waltham on notice: This kid is special in ways you cannot see. Don’t let her down.

Tuesday, June 16th, 2009

The day started with an early morning appointment with my GI, Dr Davies. Lucille, Mommy and I were 45 minutes early (the car pool lane really does work!) but they got us right into a room. Naked, I weighed in at 20 lbs exactly - but with the cast it's hard to say what my weight truly is right now. My dietician, Nicole came in to chat with Mommy. She was happy to hear that I have been doing really well on the Good Start soy formula. On the can it says for 9-24 months old - and I am closely approaching 24 months. But Nicole says I am closer to the size of a 12 month old so I can continue to stay on the formula for quite awhile if it is working for me. Dr Davies thought I looked pretty good. Taking into account my cast, it looked like I had a little growth spurt and grown taller but my weight didn't quite keep up to my last visit. Dr Davies wants to increase my intake by 10% to keep me on a good growth curve. Hopefully when we return in three months I will be back where they would like me to be.

In the afternoon, my occupational therapist, Karen came to play with me. She had brought paints and a frame so I could paint a picture for Daddy for Father's Day. I think I did a pretty good job don't you? When Daddy came home from the airport I was still awake and I showed him the frame I had made him. I think he really liked it and will probably save it forever! I am so glad Daddy is back home, I was asking about him all day!

Peyton Nicole Smith

Monday, June 15th, 2009

Daddy had to go out of town tonight to Long Beach so I had to drown my sorrows in ice cream - good thing Mommy picked up my favorite LittleBitz ice cream balls this weekend! This is banana split and it is almost as good as the cookie dough. As my upper jaw continues to grown and my lower jaw doesn't - there isn't much room in my mouth anymore for the spoon so these are much easier for me to eat - I can just pick them up with my fingers instead.

Peyton Nicole Smith

Sunday, June 14th, 2009

You can see that Chili is in my crib with me - and if I had just stopped kicking him and poking him he might have actually stayed with me during my nap time. But I just can't seem to leave him alone so Mommy let him out after a few minutes and he took a nap with her instead - much safer!

As I was going to sleep tonight, Mommy and Daddy were sitting on the chair together. Mommy pretended to slap Daddy across the face and I was watching closely. When my parents looked over, they smiled at me to let me know they were just playing. I started laughing and pretended to slap myself across the face a few times. Now my parents probably shouldn't have laughed but they couldn't help it. They aren't kidding when they say kids pick up on everything - now my parents are hoping I don't do this in public because people are really going to wonder!

Peyton Nicole Smith

Saturday, June 13th, 2009

Our day started early this morning with an 8 am vet appointment for Henry. It was time for his yearly exam and shots. Chili stayed home while the rest of us piled in the car. Henry had to bark at all the other dogs of course but once we got in the room he became quite the baby - shaking and crying. The doctor took his temperature and looked at his teeth and declared him healthy. He got a shot in his shoulder and one vaccine up his nose - and he thought he was done. But Daddy decided since Henry is so hard to hold down for nail trimming to hand him over to the experts. They did that in the back and when they brought him out to us he headed straight for the door. I think it was a little traumatic for him!

In the afternoon, my parents left me with Sarah while they went to visit Uncle Jeff in Folsom. Since he is getting ready to move, he had a few items he wanted them to take home. First they had a nice lunch and then it was back to his house to pack up the car. They ended up with a ton of stuff and felt a little bad about it - but Uncle Jeff kept insisting that if they didn't take it he would send it on to Goodwill. I even got some stuff out of the deal - Uncle Jeff had saved his son's wooden train set and lego's. Since Blain is now graduating highschool it is unlikely he wants to take them to college with him so I get to play with them now. My parents pulled out the trains right away and I loved them! This will be hours of fun in the future - thanks Uncle Jeff!

Peyton Nicole Smith