July 29, 2010

Spending 24/7 With My Daughter

Now that A has no trach and no g-tube, we lost all of our nursing care. We were fortunate enough to have a nurse come help me, ever since A was about 6 months old, all paid for by her Medi-Cal. The first year and a half we had an amazing nurse who came 2 days a week. (We were actually eligible for much more nursing, even 5-7 days a week if we wanted it, but I'm a very hands-on mom and only wanted the 2 days of help). Unfortunately, her company folded, and we had to find another company. After a bit of a search, we found a new one who gave us another amazing nurse 3 days a week (I had only wanted 2 days a week, but they had insisted on 3 days). This new nurse was with us for almost 2 years, up until her surgery to remove her tubes. We were very fortunate to have had such fabulous nurses care for A, and I know it. I read lots of blogs, and talk to other people, who are not as fortunate as to find such competent and loving care. Both nurses truly loved my daughter.

Now I have no nurse, and am with A all the time. All. The. Time. This is not new to me....when D was a baby, and up until A was born (when D was 26 months old) I was with HIM 24 hours a day. I had no nanny, no family in town, and only rarely even hired a babysitter for J and I to have a date night. Where I went, he went, and where he went, I went.

Having a nurse to help with A was very liberating. I was still with both of them much of the time, but I able to have a lot of time to myself. Because A had the trach, she needed someone to stay at school with her (not inside the class, but sit outside in case she needed suctioning or other trach care). My nurse sat there 3 hours a day, twice a week. On the rare times she called in sick or was on vacation, I had to do that, and it was very boring and confining. I was so glad to have help doing that! In addition to sitting with her at school, the nurse would watch A so I could have much-needed "me" time: to run to Target or the supermarket by myself, to exercise, to meet a friend for coffee, to rest. And an unexpected bonus was that D got lots of "special time" (just me and him)....if A had been born healthy, I would never have hired a sitter to watch her so that I could spend time alone with him, but we ended up having lots of dates getting ice-cream, going to the park, etc.

Now it's me and A, all day every day (D is in summer camp, but when that ends in a week it will be both of them until school starts!) Not that I'm complaining. First of all, I'm thrilled that she has her tubes out, and it's 1000% worth the trade-off of having no help. Secondly, I CAN take her to daycare if I needed, like the daycare at the gym I took her to last week. Even a friend can watch her if I wanted to ask. Thirdly, and most important, she is a gift, and the time I get to spend with her, while tiring at times, is a blessing. She is getting healthier every day, and I get to enjoy that....


July 26, 2010

What Do You Wish For When Your Wishes Have Come True?

I have expressed on my blog before just how grateful a mama I am. Despite all the curveballs that life has thrown at me and my family (not the least of which is a husband with Young-Onset Parkinson's Disease and a daughter with a huge list of medical issues), I do appreciate all that we have and how good we have it.

Since A got her feeding tube and breathing tube removed a week and a half ago, I have been thinking of all I had wanted for A in 2010. As I have mentioned before, my big goals are all checked off:


develop more language, both receptive and expressive

eat and drink enough to get her feeding tube removed

get her breathing tube removed

My 2010 goals for her are all checked off, and it's only July! Which leads me to a thought: what do you wish for when all your wishes have come true?

Yes, there are lots of thing I wish for. I wish for A to run and jump and skip and develop even more gross motor skills. I wish for her language to get even better, and her speech to become even clearer. I fervently wish for a cure for Parkinson's Disease. Heck, I will even admit that I wish we would win the lottery!

However, I know what I already have, and am grateful. In Judaism, there is a song we sing every Passover called "Dayenu". Dayenu means "it would have been enough for us". As in, "it would have been enough for us if God had led us out of Egypt", etc. In my case, it would read something like this;

It would have been enough for us if A was only able to sign; instead she is able to talk, with a great vocabulary and in increasingly complex sentences.

It would have been enough for us if A was only able to use the walker to ambulate; instead she is walking around as if she's been walking for years, instead of for only 6 months.

It would have been enough for us if her feeding tube was removed, as was the plan; instead, her breathing tube was also removed and she is tube-free.

It would have been enough for us if she were only able to hear a little bit; instead, although she is deaf in one ear, she is aided-to-normal (with a hearing aid) in one ear.

You see, in my mind, everything that A does for now on is the icing on the cake, so to speak; it's all gravy (why are all those great metaphors food related?). I'd love her to run one day, but it's ok if she doesn't. I'd love her to be able to speak clearly enough that she is understood 100% of the time by everyone, but again, it's ok if she doesn't. She has a solid base now, and anything she does from here on out is...well....the cherry on the sundae. Dayenu.

July 25, 2010

Comic Con 2010

Today we took the kids to Comic Con.

For the few of you who haven't heard what Comic Con is, it's a HUGE convention here in San Diego every year devoted to, um, comics. Not just comics, but books, film, video games, artwork.....it's all about the worlds of science fictions, fantasy, etc. Many big movies are premiered there over the four-day convention, and as a result some movie stars and other celebrities are there to promote their films and tv shows. This weekend Angelina Jolie, Danny DeVito, and the cast of "Glee" where there doing promotions (not that I saw anyone famous there myself!)

I have lived in San Diego for almost 23 years now, and this is the first time I went. The kids, especially D, were VERY excited to go. D is a Star Wars maniac, and saved up all of his allowance for the last 6 months in order to buy Star Wars stuff there. I dressed the kids in their Halloween costumes: D was Obi Wan Kenobi, and A was Yoda. I went as the best superhero of all: SuperWoman (equal parts mom, wife, advocate, hurse and athlete). Seriously, though, next year I DO want to wear a costume. So many people were in costume: Star Wars, Marvel, DC Comics, Transformers, and a ton of costumes that I didn't recognize, because I am not a comic geek.

A got a lot of attention as Yoda. Several people asked to take her picture, because she was just so darned cute! The kids got to pose with many characters (some were fans dressed up for the convention, some were actually working there), such as a Jawa (from Star Wars) and Dora the Explorer. We even got to meet the girl who voices Dora, and got her autograph.

All in all it was a very fun, albeit tiring and overstimulating, day. It was jam-packed with people, so crowded that at times we couldn't move. We got lots of free swag, including key chains, posters, and little light sabers. D spent his allowance on two Star Wars Lego sets, and we bought each kid a stuffed character (D got Darth Vader, and A got Yoda. Of course). The best part was that now that A doesn't have her trach anymore it was the easiest day ever! For the first time she got to ride in one of those wimpy umbrella strollers with no basket (we used to have to use the big heavy-duty stroller with a huge basket to accommodate her suction pump). Easy peasy.

Next year should be even more fun, since I plan on dressing up and being more of a participant. Maybe I have more geek in me than I knew!

July 20, 2010

Burden Lifted

Have you ever had something weigh you down (either literally or figuratively) for a long time? You get used to the burden or discomfort, and after a while it becomes your new normal; you don't even feel it. And when the weight is finally taken away, you realize just how burdened you were. For example, while training for a half marathon last fall I fractured a toe, and had to wear a walking boot for a few months. It was heavy and cumbersome, and when I finally was able to live my daily life sans boot, I felt so light and free.

That's how I've been feeling ever since A got her g-tube and trach removed a few days ago. She had had the feeding tube since 2 months old (well, really since 2 days old when she initially had a tube in her nose) and had the trach since 4 months old. Since she just turned 4 years old a few weeks ago, she had had the tubes virtually her whole life. I knew no different with her. My "new normal" became things that moms with typical kids would never understand: learning how to operate the machinery that would help her eat and breathe, ordering her medical supplies on a monthly basis, lugging a heavy suction machine around everywhere we went, shuttling around town every day for hours upon hours of therapy, being restricted on where we could go (no beach or pools for my daughter!) or when we could travel (it was advised not to take her on a plane in the fall/winter, which is cold and flu season). Since only my husband, best friend, nurse and myself knew how to take care of the trach, my "me time" was contingent on one of these three people watching her, and the date-nights with my husband had to be booked far in advance with either my best friend or nurse. The family joke was that she came "some assembly required" and trust me, it took a long time (especially post-bathtime) to get her ready...between caring for her breathing tube, feeding tube, hearing aids and glasses, she certainly had a lot of extra parts! Getting my son bathed and in bed was easy: just toss him in the tub, get him out, brush his teeth and voila, we were done. With A, it was so much more than that, a process that I quickly got used to but was a pain nonetheless.

Today I had a swim lesson at my gym (I am training for a triathlon and need help on my form and breathing). I had specifically scheduled the lesson for today, as normally I'd have my nurse to watch A. But our nursing care stopped immediately last week upon the removal of the g-tube and trach. At first I was going to cancel the lesson, as I certainly couldn't bring her to the pool. But then I remembered that my gym has a child-care room. A could go to daycare! It was a revelation....I could depend on other people, not just the 3 aforementioned, to watch my baby! I went a bit early, filled them in on her history (ie "See that gauze on her neck? That is where a breathing tube used to be") and left her. I had a great lesson and came back to find her happily playing. She did great! My daughter in daycare! Who knew?!?

In addition to not having to order supplies, lug around a suction machine, dye trach ties, and do the tedious tube care every day, I am looking forward to other things. Like being able to book our babysitter to watch BOTH kids and have more date-nights with J. Like putting A in camp next summer (with her trach, I'd have to bring our nurse, and also being around camp water sports don't mix well with a trach). Like signing her up for "lunch bunch", which is where kids at her preschool have lunch after class, but I never did this last year because I didn't feel comfortable asking our nurse to sit there for an extra half hour (she was already there for 3 hours!) Like not having to change her shirt in the afternoon because her stomach contents leaked through and stained it. I am very much looking forward to taking her to the beach or pool, but that will have to wait until the stoma is stitched up in 6-12 months.

This is just a partial list of what I can do now....of what A could do now....and I am LOVING the possibilities! The truth is, we will always have some extra things to do for A. She still has hours and hours of therapy a week, medication to order, and hearing aids and glasses to care for, but this is all minor compared to the care of her tubes. This weight is lifted off my shoulders, and I am loving the freedom!

July 19, 2010

My New Daily Habit

Today marks 21 days that I have worked out consistently. Every day. 21 days in a row.

I think that now this qualifies as a habit. Different studies show different time frames (some as short as 2 weeks, some as long as 30 days) but the general benchmark is that it takes 21 days to form a habit.

I have written before about my new exercise goals. I started running again, after years of inactivity, this past January. I had originally signed up to run a half marathon, the America's Finest City, which is in mid-August; I later added a second half marathon, the Disneyland one, which is over Labor Day weekend. I was running semi-consistently to train from January through June, mainly doing a long run every weekend and trying to run once or twice during the week (which ended up usually being once in the week, sometimes never).

In June a friend of mine convinced me to try cross-training (that is, adding biking and swimming to my workouts to increase endurance and to minimize the risk of injury). I did, and enjoyed the challenge so much that I signed up to do my first triathlon, the Mission Bay one, which is in October.

Since I signed up for the triathlon, I have been working out daily. I'm not talking about a going for a little walk and calling that a workout; I mean, a WORKOUT!

Here is what I have been doing:

Mondays: swim (20-30 laps)
Tuesdays: run (3 miles)
Wednesdays: bike (3-4 miles)
Thursdays: run (3 miles)
Fridays: swim (20-30 laps)
Saturdays: long bike ride (about 12 miles is my longest so far)
Sundays: long run (right now it varies 10-13 miles)

I also do ab crunches every day, and have been trying to get to the gym on swim days to do weight workouts on my legs. Ideally I would also get to the gym to do upper body strength training, but frankly haven't had (or made) the time for that so far. Plus, I am doing that hundred pushups program so I feel like I'm getting a good upper body workout 3 days a week through that.

I am very proud of myself. I have never in my life been this active. Even when I was training for a full marathon 7 years ago, I was running 3-4 days a week, but not working out 7 days a week. This active lifestyle is new to me, and it feels great. I will continue with this daily workout routine, but realize that at some point I will have to skip. For example, if I get too fatigued, I may need a rest day. Or if I get a migraine or am otherwise sick. But save for major obstacles, I would like to continue this lifestyle. As I said, it's become a habit.

As I mentioned on a previous post, I have 5 reasons for wanting to do the half marathons and triathlons. Now I have added a 6th reason: because it seems impossible for me. Therefore, I want to do it.

July 16, 2010

Tube-Free and Loving It!

My daughter, A, is tube-free.

Let me say that again. Please bear with me, as it's a sentence I sometimes thought I'd never write.

My daughter is tube-free. No feeding tube. No breathing tube. Tube-free.

Yesterday, she went in to the operating room to get her g-tube removed. This alone was cause for celebration, as she has had a feeding tube since she was 2 days old. I was thrilled to finally be getting rid of the Mic-Key button, as we had not used it for any purpose in exactly a year.

In addition to getting out her g-tube, she had 2 other procedures. Her GI doctor did an endoscopy to look for sign of reflux and at her stomach, and her ENT doctor did his annual trach scope (bronchoscopy and laryngoscopy) to see if she was ready to decannulate. I had no hopes for decannulation, especially after our last office visit. Seriously. I went into the procedure thinking there was a 95% chance he would say to wait another year, and a 5% chance that he would DOWNSIZE the trach to a smaller size (I wasn't even thinking about actual decannulation at that point). We had always been told that the way to get off the trach was to first downsize to a smaller size, then cap it so that she is not using it, and then if she tolerated that, they would actually take it out.

Before the surgery, we had were in the consult room talking to all the doctors involved. The anaesthesiologist came and and said "so, we're downsizing her trach?" That was news to me! Apparently, he had heard that they might be downsizing it during the procedure. This, of course, got my hopes waaaaaaay up, which actually made me upset: instead of thinking there was a 5% chance of downsizing her trach, now I was thinking there was a 70% chance, and I didn't to get my hopes up and then dashed.

The procedures took a long time, and I was getting very anxious in the waiting room. Finally we were called back. The surgeon said that the g-tube removal went well, and explained all that she did. Then our ENT came in. First he showed up pictures that he had taken during the scope. Her vocal cord is still paralzyed (well, one is; the other is functioning just fine), and her arytenoids are still very edemas and enflamed. This we knew; the results have been the same the past few years. But then he said "I thought it was time to stop mucking around; it's time this girl got her trach out".


I wasn't sure I heard right.

Then it hit me...he didn't downsize her trach. HE TOOK THE TRACH OUT ENTIRELY!!! I immediately started to shake and cry. It was so unexpected...I never dreamed that it would have come out that day. It wasn't even on my radar as a possibility.

The next few hours were the big test....could she maintain her oxygen levels without her trach? She went into the recovery room, with the trach on the bedside "just in case". She maintained a blood-oxygen level of 100% there, and all through out the night and today. Every hour that passed by made me happier and happier. This trach was really out, and was not going back in.

We just got home from the hospital a few hours ago. It hasn't really hit me yet just how freeing it will be. No more having to lug around a suction machine everywhere I go. No more having to make sure I have catheters, saline, and other necessary equipment. No more dying trach ties (I used to dye them pink, purple, and other colors to try to make them more fashionable). No more nurses (we were discharged immediately from her nursing agency). No more having to have a nurse or myself stay at school with her. I could have a regular babysitter. I could take her to the local drop-off daycare. I can....I can...I can...

One thing we CAN'T do yet is go in a swimming pool. I had hoped that with the trach out, soon we would be able to do water activities, which she has never in her life been able to do. However, the ENT said that her stoma will not fully close on it's own, and that even if it looks closed there will be tiny opening. So, in 6-12 months, we will have to go back for another surgery, this time to stitch up whatever is not closed up on it's own. I'm hoping to get this done in the spring, so that she will be pool-and-ocean ready by the time next summer hits.

I had come up with a list of 4 things I wanted for A in 2010....and now all are crossed off. Of course, we still have a lot of work to do, especially on speech and language issues and gross motor skills....but all that will come. This little girl is unstoppable.


talk in better sentences and more clearly

get feeding tube out

get breathing tube out

July 14, 2010

Goodbye, G-tube!

Tomorrow A is getting her g-tube (feeding tube) removed. This is a huge deal. She has had a feeding tube since she was 2 days old: for the first few months she had an NG tube (a tube going through her nose to feed her), and then the g-tube inserted in her stomach when she was about 6 weeks old. We have worked so hard to get off the feeding tube; it seems surreal that it's actually happening. (She is also getting her trach scoped, but really, I have no expectation that her ENT will say it's ready to come out.)

She got the g-tube placed because she never got the hang of coordinating nursing, swallowing and breathing all at the same time (all complications of her vascular ring, which led to tracheomalacia). When she was in the NICU, she WOULD nurse a bit (or drink pumped milk from a bottle) but it would take her so long....about half an hour to drink half an ounce. Too long. I remember the doctors and nurses in the NICU telling me that she might need a permanent feeding tube placed, but I didn't really hear them. The OT (occupational therapist) even showed me a film, showing a child with a g-tube and how easy it was to incorporate tube feeding into daily living. I watched with half an eye; I didn't want to believe that could be my daughter. But it was, and soon enough I had to acknowledge that she wasn't going to be eating on her own any time soon, and I didn't want her to be in the hospital forever.

She got the g-tube placed on August 10, 2006....and the last time we used it was July 18, 2009. Therefore, when it is removed tomorrow, she will have had it for almost exactly four years, and it we will not have used it for almost exactly one year.

So.....goodbye, g-tube! I won't miss you. I won't miss dealing with your leakage every day, with A's clothes wet and stained from stomach fluids leaking out. I won't miss having to order supplies every month from the home health agency (first Pediasure, Kangaroo feeding bags, extension tubing; in this last year only gauze and extra Mic-Key buttons). I won't miss having bulky gauze visible under A's clothes. I won't miss A lifting up her shirt, exposing the button, and having other people do a double-take.

But thank you, g-tube.....for saving my daughter's life. If it weren't for you, she would not have gotten the nourishment she needed to live and grow. It was a hard decision to get you, but it was the right thing to do. And now it's time to say good-bye.

July 11, 2010

My Daughter the Horsewoman

I took A to horseback therapy this past weekend, as we do every Saturday. She has been going for over two years now...she began when she was only 20 months old! I thought it might be nice to do a post about horseback therapy, as it has become such a big part of our lives and a huge help to my daughter.

When A was in the NICU a few people had mentioned that horseback therapy (or hippotherapy) might be a good thing for A. The seed had been planted, and as she grew older I began to research exactly what it is. This is copied and pasted from the American Hippotherapy Association:

The horse's walk provides sensory input through movement which is variable, rhythmic and repetitive. The resultant movement responses in the client are similar to human movement patterns of the pelvis while walking. The variability of the horse's gait enables the therapist to grade the degree of sensory input to the client, then use this movement in combination with other clinical treatments to achieve desired results. Clients respond enthusiastically to this enjoyable learning experience in a natural setting.

Physically, hippotherapy can improve balance, posture, mobility and function. Hippotherapy may also affect psychological, cognitive, behavioral and communication functions for clients of all ages. Clients who may benefit from hippotherapy can have a variety of diagnoses: examples include Cerebral Palsy, Multiple Sclerosis, Developmental Delay, Traumatic Brain Injury, Stroke, Autism and Learning or Language Disabilities. However, hippotherapy is not for every client. Each potential client must be evaluated on an individual basis by specially trained health professionals.

What really got my attention here was the word "balance". A was born without any semi-circular canals. These are small canals that help control balance. A typical person has 6 of these canals (3 in each ear). As far as the MRI could see, A has none. Zero. Zilch. So her balance has always been off, which caused her gross motor skills be be greatly delayed (she didn't start walking until age 3 1/2!) Knowing this, I was eager to try horse therapy as a way to give my daughter any advantage and help I could.

First, I had to find a place to take her. I looked on the NARHA website (North American Riding for the Handicapped Assocation) for a local center, and was pleased to find that there were several in my vicinity. However, most took kids starting at age 5; when I started to look, A was only 12 months old! I was fortunate enough to find a place that was willing to take her, although they wanted me to to wait several months until she got a bit older. 8 months later, at the age of 20 months, A started horse therapy. I should also mention that her pediatrician had to sign off on the paperwork to get her enrolled; horse therapy is not for everyone, and should only be done with a doctor's approval. And I had to go to a tack store to get her a helmet---a pink one, of course!

When A first started on horseback, she was assigned a small pony named Scarlet, a beautiful brown horse. She also had 3 people working with her: one to lead Scarlet, and 2 "sidewalkers", who are people who walk on either side of the horse to help hold A up. They hold onto her thighs, to give her extra stability and to make sure she doesn't fall off the horse. Her first day---actually, her first month--she HATED it! She cried the whole time, signing "all done". I stuck with it, though, and sure enough within in a few weeks she began to tolerate it. Now, over 2 years later, she loves it. She still has the same setup as we always have (she still needs a leader and 2 sidewalkers) but her attitude has changed. I think she really looks forward to going every week.

I am convinced that horse therapy has greatly helped A's balance. It is a lot of work to be on horseback, and she is on for 30-45 minutes each week. She really has to control her posture and balance on Scarlet. She also sometimes helps to "groom" Scarlet, standing next to her (with my supervision, of course) and brushing her hair and mane. Additionally, it has helped expand her language, cognition, and social skills.

I don't know how much longer we will be doing horse therapy. I could see ending in about a year or so...or I can see having her continue indefinitely, into her teens. There are many teens and young adults there that not only take lessons, but help care for the horses themselves. Regardless of how much longer we continue, I am grateful for finding out about horse therapy, and for the undeniable help it has given my baby.

July 8, 2010

One Week Til G-Tube Removal!!!

One week from today, my daughter A will go into the operating room. She will be seen by 3 doctors: her ENT doctor will scope her trachea to see if her trach is ready to come out; her GI doctor will scope her esophagus to check for signs of reflux; and a surgeon will REMOVE HER FEEDING TUBE!!!!!

I am trying not to get my hopes up that her trach might come out this summer. Actually, I don't have a good feeling about it at all. So I'm not focusing on the potentially dreaded ENT news...I am focusing on the fact that regardless of what happens with her trach, a week from today she will have one less tube in her body. We've worked really hard for her to get her g-tube (feeding tube) removed; I thought this day would never come.

She will have to spend one night in the hospital (mainly for observation due to possible infection). I am nervous about that. As hard as it may be to believe, A hasn't really been in the hospital much. Yes, she was in the NICU for 12 weeks. Then she got her trach put in, and was in the hospital for another 4 weeks. And she had her cleft lip repaired and was in the hospital for one night after that surgery.

But that last surgery (the cleft lip repair) was in February 2007, at age 7 months. AND SHE HAS NOT BEEN IN THE HOSPITAL SINCE!!! Even though she has gone into the O.R. the last two summers for her ENT to scope her (and look at her trach), both times have been out-patient...we were home before lunchtime both visits. This will be different, as the surgeon insists on the overnight stay. It's a small surgery---she will be putting a stitch or two in A's stomach to close the hole up, and a stitch or two in the skin on her tummy to close the stoma--but surgery nonetheless.

What I'm most nervous about is that A won't understand she is going to the hospital. She has no experience going inpatient (in her recent memory) and I don't think she would understand if I explain it to her beforehand. I should take A on a pre-op tour of the hospital. I just found out that they offer one every Wednesday evening...but the next one would be the night before her surgery, and I want her in bed early to rest up. It's from 6:30-7:30, so we wouldn't get her home and in bed until about 8:30...and her normal bedtime is 7:00.

I am planning on going to Target and buying fun, new things for her to do in the hospital--coloring books, stickers, etc. I hope this helps. And I will be there the entire time. I won't leave her side all night unless I have someone else there (my husband or my mom) to relieve me.

If anyone has any pre-op suggestions, I'd love to hear. I'm nervous...but super-excited to get this feeding tube finally removed!

July 5, 2010

Doctors Aren't Always Right

This time of year we start getting into anniversaries....none of them good. You see, A's birthday was last week, and since she spent twelve weeks in the NICU, we had a whole summer of events that I'd just as soon forget: Her heart surgery at 10 days old to correct her vascular ring. Getting her g-tube placed at 2 months. The day we found out that she'd had a prenatal stroke. The day we learned she had failed her hearing tests and was deaf/hard-of-hearing. The list goes on and on, and I promise I won't bore my readers all summer by announcing things like "today is the anniversary of when we found out her vocal chord was paralyzed"....but today IS an important anniversary that I would like to discuss.

Four years ago today, on July 5, A was transferred by ambulance from the NICU in the local hospital where she was born to the NICU at Children's Hospital, which had a much higher level of care. To say that J and I were in shock was an understatement. First, I had just been discharged a few days before, without my baby, and was having to go back and forth to the NICU, pump breastmilk several times a day, spend time with my 2-year-old son, and heal from the c-section I'd had. I was physically, mentally, emotionally, and spiritually exhausted. Following the ambulance down to Children's was surreal. And just checking in was jolting: we'd gone from a small, local NICU with maybe 2 babies in it, to the hustle and bustle of Children's Hospital, whose NICU had about 40 babies. My baby didn't belong there---yet she did, and she belonged there for quite a long time.

That night, J and I came back to visit A (we had gone home to spend time with D). When we got there, a neonatologist approached us and told us that A had a heart defect (the aforementioned vascular ring) and would need heart surgery, and that additionally she had diagnosed A with DiGeorge Syndrome. Apparently, if you put together a vascular ring plus a cleft lip it points to DiGeorge Syndrome. She didn't tell us much....just gave us a handout about the disorder, and told us to "disregard the section in the handout about mental retardation". She spent about 5 minutes with us, talking to us in a very matter-of-fact detached way, gave us a handout, and left. That was it.

That night was terrible. I cried. I threw up. J cried (the first and only time I had seen him cry throughout that whole terrible summer). We were scared about her future...not only her physical health, but now her cognitive health. Remember, this was just the beginning of her life, and we had yet to learn all the other birth defects she had (vision issues, hearing issues, the prenatal stroke, etc). This was just the tip of the iceberg.

But here's the thing: A DOES NOT have DiGeorge Syndrome. They did a blood test and it clearly shows that her 22nd chromosome is intact (in DiGeorge Syndrome a piece of the 22nd chromosome is deleted). So, she does NOT have this syndrome...the neonatologist was WRONG.

It upset me then, and it pisses me off now, that this doctor made a diagnosis without knowing all the facts (waiting two extra days for the blood test to come back would have shown her that she had misdiagnosed). That would have saved me and J from a few days of needless worry, fretting and googling. It also made me angry that she would make such a bold diagnosis and simply give us, the parents, a little handout and then walk away.

Nonetheless, today is the anniversary of when I realized that doctors can be wrong...that you can never give up hope....that you can't go by a handout or an article or a google document....that children will prove you wrong, even WITH a correct diagnoses. No one can tell the future. Our kids have NOT read the books of what they are not "supposed to" be able to do. In essence, today is the anniversary of my eyes being opened, of asking questions, of hoping and praying.

And because of her intact 22nd chromosome? Now 22 is one of my lucky numbers!

July 4, 2010

The Joy of Build-A-Bear

A few days ago A turned four! It's hard to believe that four years ago was my darkest time ever. This time four years ago, I had just been discharged from the hospital, and went home without A, who was still in the NICU. The next day, July 5, she was transferred to Children's Hospital NICU, a much higher level of care, where she remained for eleven weeks. That whole summer, from Fourth of July through Labor Day and beyond was such a blur of sadness and fear.

We celebrated A's birthday yesterday with a party at Build-A-Bear. I invited five of her friends (children she knows from school and my own social life) so between them, A, and her brother, D, we had seven kids total. It was a blast! Each kid got to pick out virtually any animal they wanted. Then they got to name it, help stuff it, groom it, and pick out any outfit on the wall. A picked out a pink Flamingo (I helped her name it "Pinky") and she opted for an Ariel mermaid outfit for it. Too cute. After the Build-A-Bear part, we all trooped up to the food court where we sang Happy Birthday and feasted on an Ariel-themed chocolate cake and juice.

I was struck by how different my life is from the last time I was at Build-A- Bear. I took D there a few weeks before A was born, to make a "welcome to the world" gift for him to give to her. Back then, D had just turned two. He picked out a pig for A (named Piggy) and he also made a unicorn for himself (named Yogo...and he still loves this animal!) Just like the spiral dance I talked about a few months ago, my life has really come full circle from that day. Then, it was just me and D, blissfully unaware of what would happen when my daughter was born. Yesterday it was...just bliss. A celebration of A's life...how far she's come since those dark days. It was especially poignant to note how far she's come just since her last birthday....since turning three she learned to walk, and stopped using her feeding tube!

Build-A- Bear is now officially a place of celebration for me...and I will forever more associate it with the gift of my daughter. I know that even if A doesn't always cherish Piggy and Pinky, I will keep them always....reminders of her miracle.

July 2, 2010

How Much Does It Cost to Fulfill A Dream?

A few weeks ago I wrote about my dreams coming true with A taking her first dance class. She has gone twice now to this fabulous Creative Movement class, and she loved it each time. The Mommy-and-Me ballet class I had wanted (wanted, dreamed about, and yearned for) since A was born won't be happening until the fall, so on the heels of her success in the Creative Movement class, yesterday I took her to the studio's Intro To Ballet, for ages 3-4. I just wanted to check it out to see how she did before I paid to sign her up.

This class is much different than the Creative Movement class. In that class, the kids can wear whatever they want, and go in either socks or barefoot. In the ballet class, the girls have to wear pink leotards, pink tights, and pink ballet shoes. Of course, I wasn't going to spend money on all that gear until I knew the class was right for A, so she wore a darling pink leotard/tutu combo that my mother-in-law had sent her, and was barefoot.

As always, A blew me away. She loved the class, which I expected, but more than that, she tried so hard and was able to do so much! Of course, some things she can't do at all---skip, jump, jump in the air with her legs scissored--but she tried. When the teacher had the girls stand on one leg, A tried to raise one leg--even succeeding for a few seconds at a time. She had no concept of the traditional ballet positions (first position, etc) but first of all, she had never seen them before, and second of all, some of those poses will be hard for my new walker. The best part was seeing some of these other girls, all her age (A just turned 4 this week)....some of the girls were able to do everything, but many others couldn't skip or jump either. That made me feel much better. I'm always assuming that other kids her age can do EVERYTHING, which obviously is not the case.

Today I had had to got to fulfill a dream of mine--to go to Capezio and outfit my daughter for ballet! We didn't have to buy a leotard, thanks to the outfit that my mother-in-law had sent, but I had to buy shoes, tights, etc.

So, how much does it cost for dreams to come true?

Ballet Slippers............$20
Ballet Bag...................$14 (not necessary, but since it's my dream, I couldn't resist!)

With tax, $53.29 for a field trip to Capezio, a daughter in ballet class, and the knowledge that she is well on her way to being the typical kid I want her to be. As my father would say, that's a bargain at double the price!