December 30, 2010

2010--A Recap For Me And My Daughter

2010 started out as a hellacious year.

A few days into the new year, my beloved grandmother died. She was 90, and was very sick and her death was expected, but it was hard for me. She was my last grandparent, and I had been close to her. Two days after she died, my cousin's 16 year old daughter was tragically killed in a horrible car accident. As much as my grandmother's death upset me, it was her time. For my teenage cousin, it was so horrific that even now, almost a full year later I am tearing up just typing this. The rest of January was a blur----I was sick, the kids were sick, my family was grieving, and I remember desperately wishing that the year would just get over with. It had only been one month into 2010, and I thought things would never get better.

But better they got. In fact, the deaths in my family aside (and I know it's hard to put aside, but I also need to look at the GOOD), this year has the best ever, especially for me and my daughter, A. To recap:

In January, my daughter, A, started walking unassisted at age 3 1/2 . With all of her medical issues, not the least of which was a lack of semicircular canals, which are the part of the inner ear which control balance, it's amazing that she is walking at all. I also began training for a half marathon, the first race of any major distance I'd trained for since 2003.

In March I turned 40....looking and feeling better than I ever have. I also got diagnosed with migraines that month...which was great because I've been suffering from them for years and now with a diagnoses I could get prescription medications that work.

In April A did her first race...a 50 yard toddler trot that even a few months before would have been unimaginable. It was also my son, D's, first race. He did the 1/2 mile run.

In June I got inspired to not only train for a half marathon, but to also start triathlon training. As I was not a swimmer or biker, this was a stretch for me. This started a workout routine for me that had me biking, swimming or running every day. And to this day, I exercise daily, unless I am sick or have some other extenuating circumstances.

In July we got the surprise of our life when not only her feeding tube was removed but also her breathing tube. A had no tubes in her body for the first time since she was 2 days old.

In August I completed my first half marathon since 1999, the America's Finest City Half, and beat my time from 11 years before.

In September I did the Disneyland Half Marathon, again beating my time.

In October I did my first two triathlons: the Mission Bay Triathlon and the Fearless Triathlon (which was a double sprint).

In November A stepped up and down a curb for the first time, thus accomplishing her final goal in physical therapy. Although we will be getting PT services through the school district for some time to come, this ended her medically-based PT services--which she has been getting weekly since she was about 2 weeks old. She also saw her nutritionist for the last time, another specialist she had been seeing since she was born.

Finally, in December, we got news about her vision that blew me away. I had always been told that her left eye was legally blind. Our opthomology visit this month now leads me to think otherwise. I also gave a speech about my miracle baby in front of 800 people.

All of these milestones----medical for my daughter, fitness for me--have made 2010 an amazing year. Add to the milestones that my daughter's speech has blossomed, her writing has improved with occupational therapy, and my own mental health has improved as I have taken more time for myself, and it has been a stellar year.

December 26, 2010

Freaking Out About The Past

As I mentioned earlier this month, we are in the process of burning our home videos to DVD. My daughter, A, has been loving them. She asks all the time to watch "videos", as she calls them. I think she loves them because they are movies starring people she loves. Most of the videos burned right now are of my son, D, when he was a baby through todderhood. I think she gets a kick out of watching her big brother as a baby.

Today I put on a video of D's third birthday party. A was about 10 months old at the party, a non-crawling infant. Heck, she wasn't barely sitting up unassisted at the party; some footage shows me setting her up in a tripod position on the floor (sitting with her hands out for support). As soon as she saw herself on the video, she started hysterically crying and insisted I turn it off and put a new DVD in.

Why? I think she is scared of images of herself at that age. She was born with a bilateral cleft lip, and she had surgery to correct the cleft at 7 months. At 10 months old, her scars from the surgery were still pretty fresh and raw. Come to think of it, she doesn't like even photographs of herself at this age--or earlier. If she sees a picture of herself with the unrepaired cleft lip she also freaks out.

I understand why the images scare her---although I thought she was gorgeous even with the cleft, a young child would not understand. And she certainly can't comprehend that she is that same baby. She looks totally different now---the scarring is so minimal that you have to look really closely to even tell she had a cleft lip. She doesn't freak about about old pictures of her with the tracheostomy and feeding tube, probably because she got them removed less than 6 months ago and can still remember them in her body. The cleft lip? She has no recall. It must upset her to think that was her.

I will not force her to watch those videos or look at the pictures. I don't want her to be upset. I know one day she will even look back on photos of herself with the trach and be astounded that that was her. She older she gets, the farther away she gets from the medically fragile baby she had been. She is growing up to be a tough, resiliant, determined, smart, and beautiful little girl.

And that is how I want her to think about herself.

December 21, 2010

Appreciating Typical

We have about a million hours of video footage of the kids, and are finally in the process of transferring the tapes to DVD (so we can actually watch them). Yesterday I put one of the DVDs on. The one that got randomly chosen started when my son, D, was 21 months old and ended a few months after his birthday. His entire 2-year old birthday party is recorded, which reveal a very pregnant Sugar Magnolia (my daughter, A, was born just 2 months after his 2nd birthday). I hadn't seen this since we shot the video, and I, too, was entranced.

It was amazing to see how little D was. At the time, he seemed so grown up, like such a big boy. He was always very precocious, even at that age. We have footage of him, at 21 months old, singing the entire alphabet. He had the Fisher Price Little People A to Z Zoo and was rattling off the names of all 26 animals---even obscure ones like ostrich, nightingale and yak. After the birthday party scene, we have footage of him riding his tricycle for the first time (a gift from my father and step-mother) and although J had to help him a bit, he pretty much understood how to ride it.

The more I watched, the more my emotions changed. First I felt happy reliving these fun moments. Then I felt nostalgic. I don't remember D being this young, and again I felt like time is getting away from me. Suddenly I felt awe. After having A, with all her developmental delays, it absolutely floored me that D knew the alphabet at 21 months and was riding a tricycle at 2. Finally, I felt sad. The things that come so easily to D are so hard for A. When she was 2, she had just started to crawl. Even now, at 4 1/2, she doesn't a trike with half the finesse that D did at age 2.

Since D was my first child, and was either developmentally on time (said his first word before he was one, walked at 13 months) or even early (he was reading at age 3) I thought that's what all kids did. When he was born, he latched on right away and was a champion nurser until I weaned him at 14 months old. He sat through, and understood, his first movie (Curious George) at age 2. I never appreciated how TYPICAL my son is. He hit all his milestones---speech, gross motor, fine motor, feeding, even potty training--when he was "supposed" to.

It never occurred to me that my second child would have so many challenges. Not able to eat and require a feeding tube? Not being able to walk until age 3 1/2? Not passing her hearing test and requiring hearing aids? It wasn't on my radar. But now I celebrate her milestones with a fervor that I never felt with my son. Sure, when D hit his milestones I was the proudest mama ever. I relished every little thing he did--and I still do. But with A, it's different. I don't just relish her accomplishments, I shout from the rooftops! Because everything is so much more difficult for her, what she does means so much more.

Now I know better. I know that typical development is a thing to be cherished and not taken for granted. And trust me---I don't.

December 19, 2010

My Big Speech!

A few weeks ago I was the guest speaker at A's preschool's annual auction/fundraiser. This fundraiser brings in thousands of dollars for their amazing inclusion program. Every year they have one parent, who has a child with needs, come and talk about their child and how the school has affected them. I was honored to be the speaker this year. There were over 700 people there, and I was nervous. But I think I got my point across...I was able to talk A's amazing journey, as well as tell people what a fantastic thing inclusion is.

Below is my speech. For purposes of anonymity (since my blog is anonymous) I changed some names. But the speech is the same.

My daughter A is now 4 1/2. She has been at ABC since being in Funtastics at age two. When I came to my first auction/fundraiser a few years ago, I knew that one day I, too, would be up here talking. Not because I like public speaking, but because A’s story is worth telling. And I am thrilled to have the opportunity to be able to share with all of you how fabulous I think this preschool is. I want to tell you about A’s journey first, and then tell you how being at ABC has affected her.

I should backtrack by telling you that A has an older brother, D, who is two years older than her. D is a very healthy, typically developing boy. I had no reason to believe that my new baby would be any different. It was a healthy pregnancy, with a healthy ultrasound. A was born by planned c-section at 38 weeks. I went into the surgery thinking that I would give birth to my daughter, spend a few days in the hospital, and be home in a few days.

I’ve heard it said that the moment you find out you have a child with special needs changes your life forever. From that moment on, as with any life-changing event, everything can be categorized as happening before or after finding out. Some people find out their child has challenges while still in-utero, from an ultrasound or amnio. Some people find out as soon as their child is born with an obvious birth defect. Some people don’t find out until a few years later, like when a diagnosis of autism arrives. Still others find out they have a child with special needs much later in life, like if their child is injured in an accident.

I knew something wasn’t right from the moment A was born. The first indication that something wasn't right was that A was born with a cleft lip. This was shocking to me, as we had had an ultrasound and this did not show up. However, she had been in profile during the ultrasound, so I can see why it didn't show. I was in shock, and was devastated. How could my baby girl have a birth defect? I thought it was the worst thing that could have happened. However, I fell in love immediately, and was fiercely protective. This is our first picture together, and you can see the fear in my eyes. I had no idea what was in store for us.

I shortly found out that having a cleft lip is far from the worst thing that can happen. Within 2 days of her birth, A had lost almost a pound, despite the fact that I was desperately trying to nurse her. She was taken to the NICU (neonatal intensive care unit) at the hospital and then transferred to the NICU at Children's Hospital, where she remained for the next 12 weeks. It turned out that she had a vascular ring, which was a blood vessel coming from her heart and was wrapped around her trachea and esophagus. This was affecting her breathing and ability to eat, which led to her severe weight loss. At 10 days old, A had heart surgery to cut that blood vessel...but where the ring was around her trachea was still very floppy; it wasn't rigid like the rest of the cartilage. This led to severe breathing difficulty, as her airway kept collapsing on itself. During the 12 weeks she was hospitalized, we found out about many more birth defects, including but not limited to: a paralyzed vocal chord, severe vision impairment, she was deaf in one ear and hard-of-hearing in the other, and had no semi-circular canals, which are the parts of the inner ear which control balance. We had to insert a feeding tube into her tummy, because with the breathing difficulty she never did get the hang of eating, breathing and swallowing at the same time. Eventually she also got a breathing tube, or tracheostomy, because her breathing issue was so severe. I seriously did not know what her future would hold.

After we discharged from the NICU, we were hooked up with an early intervention program. We had a fabulous teacher, S, who would come to our house once a week to work with A, teaching her developmental tasks. When A was about 2, S asked us if we were interested in the Funtastics Program at ABC. She told us it was a program for 2 year olds, that even though I would have to remain on campus because of her tracheostomy, it was a drop-off program, and that it would be great for A. I jumped at the chance, since for the previous 2 years all of A's outings consisted of doctor's appointments, therapy sessions, and shuttling my son D to his activities. She was in class with B, and L and with early intervention teachers M and M. It was amazing to see her in a school environment, doing art projects and playing on the playground.

Soon it was time to decide where to put A for preschool. I had 3 choices. Choice #1 was ABC of course. Choice #2 was the special needs preschool run through the local school district; and Choice #3 was the preschool where my son had attended. I really didn't want the special needs preschool; cognitively A was right where she should be, and I didn't think it would be an appropriate placement. I just knew that A would rise to meet any challenge, and felt that a special needs preschool wouldn’t provide the kind of challenge I was looking for. I’d always dreamed that she would attend the preschool where my son went, which was through our synagogue. It was a great school, offering a good curriculum and a Jewish education, which was important to me, being Jewish. But when I talked to the preschool director, she was very wary. She was concerned about having A there. She wasn't walking yet, only crawling, and the director was concerned that she would get run over on the playground. She voiced concern about this, and concern about that. I knew about the inclusion program here at ABC, and the director told me that they wanted A. They WANTED her! It was music to my ears. But what really put me over the edge in my decision making process was something that one of her early intervention teachers told me. She said that the child doesn’t need to be ready for the school; the school needs to be ready for the child. My synagogue was in no way able to cope with a child who wasn't walking and had a speech delay, but ABC was. My decision was made.

A was in the 3 year old class last year with H, D and M. And this year she is in the 4 year old class with J, S and N. I wanted to make sure to mention each teacher by name, because each has had a huge impact on A’s life.

To update you, A started walking this past January, at the age of 3 ½. This summer she got both her feeding tube and breathing tube removed. Her speech has blossomed. She is learning to go down a slide without falling over. She is starting to write letters of the alphabet. She is a social butterfly. All in all, the grim future I envisioned for my daughter has not come to pass. She has exceeded all my (and the doctor’s) expectations. She is a true miracle child.

So that brings me to the question of what does being in an inclusion program mean for my daughter? For one thing, it's been great socialization. The kids just love her. When we walk in in the morning, the other kids often shout “A's here!”. They love to play with her, and she loves to play with them. You have to understand that before A started school she rarely played with kids her age, partly because we'd been so busy with therapy and doctor's appointments but also because of the typical “second child syndrome” where the first kid gets more!

Secondly, she gets the role modeling of typically developing kids. Her speech has vastly improved since being in the school. She has been asking to go potty (even though she isn't potty trained yet) because she sees her peers going potty. Just last week S showed me some letters she wrote after watching her peers practicing writing their letters. Without typically developing kids to model, I am convinced that some of these gross motor, fine motor, speech, and self-help skills would have been slower to develop. She drinks out of a sippy cup normally, but now drinks out of an open cup after watching her classmates do so at snack time. My child, who never ate and was on a feeding tube for a few years, is now in a lunch program at school.

Third, because it is an inclusion program, and there are kids here of all sorts of abilities, the kids don't look at A as being different. Yes, in previous years she had a breathing tube in her throat, crawled instead of walked, and was virtually unintelligible. Even now she will always have hearing aids and glasses. But I don't think the other kids even notice that. There are kids here in wheelchairs, with glasses, with Down Syndrome and autism. What a great lesson for kids of all kinds, that we should look beyond what people look like. I would like to think that all kids who come through this school are raised to be more tolerant, and grow up to be more tolerant and accepting adults.

Fourth, not only do I feel a huge level of acceptance for A, but I feel a level of acceptance. The other moms here, not just in her class but in the school, don’t shoot me looks of pity like I get at other places. The moms here get it; either they themselves have kids who have needs, or they don’t have children with special needs but know that this is such an accepting environment.

Finally, last but not least, being here in the inclusion program gives me a sense of normalcy. Yes, A has hearing aids, 8 hours of therapy a week and a list of doctors a mile long. At least she no longer has a breathing tube and feeding tube! But now, thanks to ABC she also has birthday parties, playdates, field trips, artwork on the fridge, paint splattered clothes, stories to tell and songs to sing. It’s all I ever wanted for her; to do what other kids her age are doing.

I cannot speak highly enough about the staff here at ABC. They all seem to honestly care about A. But it’s not just A---it’s every child here, whether or not they have special needs of some sort. Typically-developing or not, the teachers embrace each child who walks through these doors. From my observation over the past 2 ½ years, they don’t give any child special treatment. They encourage each child to be the best he or should could be. I’ve seen that first hand with A. I am convinced that she wouldn’t be flourishing the way she is today if she weren’t here. It’s been such a blessing, and I’m thrilled that I got the opportunity to share with you all tonight.

December 18, 2010

Tears and Books

My son, D, age 6, is a voracious reader. He's been reading since he was 3 years old, and as of last year in kindergarten (at age 5) he was reading chapter books--sometimes 2-3 in one day. He is really into series books, and likes to own the books in the series. His favorites are Magic Treehouse, Beast Quest, Encyclopedia Brown, and the Boba Fett books. He is currently in the middle of reading The Chronicles of Narnia.

Needless to say, with him owning so many chapter books, he was running out of room on his bookshelf. Last week he cleaned out his books and gave all the ones he deemed too "babyish" to A. In turn, I had to clean out A's bookcase, and get rid of all the books that were too babyish for her. I ended up with a huge pile of books which I gave to my next door neighbor (who has a one year old; she was thrilled to get the books).

This whole process made me very sad. I've written before how I would love to slow time down, how time is just getting away from me. It seems like just last year when I was reading these "baby" books to my infant D. We spent night after night with these books....reading them...looking at the pictures. We had our favorites. Now they are cast out of his bedroom, to make room for books that I thought he wouldn't be reading for many more years (is my first grader REALLY reading Narnia?) In one afternoon, he disposed of all little-boy reading material.

And what of my daughter? She now loves to read books about Dora the Explorer, Olivia and the Disney Princesses. Although she still occasionally looked at the baby books, there was no need to keep them. Her bookcase is now filled with D's books; a whole new set of books to explore with her.

I know they are only books, but they represented a big part of my kids' childhoods. They were part of years of nightly tuck-ins, lullabies and snuggles. I will never get that phase back. The progression is forward, not backward. I cried many tears last week while cleaning out the bookcases. I know it's natural...but it's hard.

December 15, 2010

Yet Another Medical Miracle

Yesterday we got an unexpected piece of good news regarding A's eyesight! She has coloboma, which is basically a gap in a part of the eyeball. For A, her coloboma is on the optic nerves of both eyes. What this means is that she likely has fields of vision missing. We don't know for sure WHAT she sees at this point, as she is still too young to tell us. But the assumption, ever since she was diagnosed with the colobomas at about 2 months old in the NICU, is that she definitely has vision impairment in both eyes. We were told that her left eye is worse; that it is legally blind, likely only seeing light and large shapes. So, although her actual EYESIGHT is ok (she is not far-sighted or near-sighted) we keep protective glasses on her at all time, to protect what we have. After all, if something happens to her right eye, all she'd be practically blind. I'm protecting what she has.

Yesterday we went to her opthamologist for her biannual check up. We were first brought back by our doctor's tech, who did an eye chart test (using shapes) with both of A's eyes uncovered. She was easily able to identify all of the shapes going halfway down the chart, and the tech pronounced her vision as 20/30. Very good. We talked about how A's left eye is legally blind, and she told me that although she doesn't see much out of it, whatever she DOES see (light and shapes) likely helps with depth perception. Then she put the dilating drops in A's eyes, and we were sent out to the waiting room for 30 minutes.

When we were called back in to the office, we were seen by the opthamologist herself. She started to examine A's eyes, and she told us that A is getting a bit of astigmatism in both eyes. She said it was very slight, and that if A were a kid just walking in off the street she'd tell us to come back in a year or so. But since A is already wearing protective glasses (and actually needs a new pair because hers are scratched) she wants to put the prescription in the lenses to help her. I felt good about that.

She then started to really peer into A's dilated eyes. I asked how the colobomas looked. Below is our conversation:

Doctor: Well, they look the same. It's funny, though...anatomically her left eye looks healthier than her right eye, but it's actually her worse eye.

Me: How do you KNOW it's worse?

Doctor: Because of what she's telling us.

Me: (feeling confused) Exactly what is she telling you?

Doctor: She can't see anything when we cover up her right eye.

Me: Well, when they test her, both of her eyes are uncovered. They haven't tested her left eye alone in years [actually before she was verbal]. Could we try it again?

Doctor: Sure,I guess so.

The doctor then covered up A's right eye, and switched on the eye chart screen across the room. On the chart was a big letter "D".

"D," say A.

Excuse me? Did my daughter, who is supposedly legally blind in that eye, just identify a LETTER?

The doctor changed the screen to the letter "L".

"L," says A.

I started crying. The doctor was visibly shaken, and was upset with her tech for not testing each eye individually. But this changes everything! I'm not sure WHAT her vision is, but I know it's better than we'd thought!

The doctor now wants to see A at the end of January. She wants us to get the glasses for astigmatism, and then do an undilated vision test. Hopefully after that we'll know more what A is seeing. Patching might be involved at that point (patching her right eye 1-2 hours a day) in order to strengthen the left eye.

Whatever happens, I am so happy. I never, ever suspected we'd get vision news like this. I know that regardless of the news, she will still be severely vision impaired--with gaps on her optic nerves that's to be expected. But it's better than I thought. And that's a miracle.

December 9, 2010

Graduation Time

Wow. It's been way too long since I've updated my blog. I have no excuse except that I have been pretty busy and overwhelmed---and when I feel this way I tend to withdraw and isolate. I guess this also extends to blogging as well! I know I haven't been as active on Facebook, Twitter and dailymile as I usually am too.

We got some exciting--and bittersweet--news about my daughter, A. She is graduating from two programs that she has been in virtually forever: nutrition clinic and physical therapy!

A has been seeing a nutritionist every 4-6 weeks since she discharged from the NICU at age 12 weeks. Because she had a g-tube practically since birth, and she has always been on the low side for height and weight (typically in the 3rd-5th percentiles) we had to go in to see a nutritionist at Children's Hospital often to do weight checks. She would adjust A's feedings according to her weight (ie adding more Pediasure, taking away a bolus, etc).

We last saw the nutritionist back in May, a few months before A got her g-tube removed. Yesterday we went back for one final weight check. A is in the 6th percentile for height and the 12th for weight! She hasn't had this much meat on her bones in years...and it's all her doing, all oral eating, obviously, since we no longer have the tube (and in fact, she hadn't used the tube since July 2009, a full year before getting it removed!) She told us that A has graduated from nutrition clinic. While I am ecstatic about this news, it was bittersweet, as we have been seeing this same woman every month for basically 4 years. We have developed a relationship with her, seeing her so often, so we both had tears in our eyes as we hugged goodbye.

Right after our nutrition appointment, we went to our weekly physical therapy (PT) session, also at Children's Hospital. We were told that we are being discharged from PT! Now that A has met her big goal--walking up a curb---our therapist feels comfortable discharging her. This is so shocking---A has been in PT since she was literally one week old! Physical therapists would come to work with her during her 12 weeks in the NICU! So the thought of being discharged at age 4 1/2 is fabulous---and scary.

Of course, A will still be receiving services and doing things to boost her gross motor skills. She will continue to have PT through our school district (she gets 30 minutes one-on-one once a week) and that PT has no intention of discharging her for several years, as she wants A to be completely playground- and school-safe first. A also get an hour a week of adapted P.E. through the school district. Additionally, she is also in ballet and horse therapy once a week. And I just found a developmentally appropriate gymnastics class (!) that is in the same time slot PT used to be, so I'm going to sign her up for that to continue building her skills. So with all of that going on, I'm comfortable ending the hospital-based PT, and it IS appropriate to have her do something more community-based instead. However, just like with our nutritionist, we have been seeing this particular PT since A was one year old....every week for 3 1/2 years. It will be sad not to see her anymore.

Again, I am very comfortable ending both the hospital-based PT and the nutrition clinic. I am actually over-the-moon happy, as it means that my baby girl is thriving and flourishing. But it's hard to say good-bye to professionals with whom I have built relationships, and who have been so instrumental in my daughter's success.