May 29, 2010

My Spiral Dance

Years ago, I heard a metaphor of a spiral dance. It went like this: you go about living your life, day by day, week by week, year by year. You move along life as though in a circle. When you get to a particular repeating milestone you start the circle all over again. An example of a repeating weekly milestone would be a particular day of the week. More drastic are yearly milestones, such as birthdays, wedding anniversaries, the first day of school. These are events that happen over and over again; we are living life in a circle.

Except that in the spiral dance metaphor, we don't live life in a circle...rather, we live life in a spiral (think of a slinky if you want a good spiral visual!). So when we get to the beginning point again of the circle, we aren't exactly where we started; instead, we are a level higher than before. So while we celebrate our birthdays every year, there was a whole 365 days in between birthdays in which we grew, learned, and changed. The first day of school looks different from kindergarten to 12th grade...the occasion is the same, but with so many "spirals" of circles in between in which we grew by leaps and bounds. An especially poignant example is a 10- or 20-year high school reunion. You're having dinner with the same people that you knew years ago, but boy, have you grown so much since being a squirrelly high schooler with them!

I usually don't take time to reflect on my own spirals, on how much I've grown, which is a shame. I think that such self-reflection is wonderful, and validates human potential. However, this week I had an epiphany of how much I've grown since A was born almost 4 years ago.

After school one day this week, I took my son, D, to Baskin-Robbins. We call such occasions "special time", since A was home with our nurse and it was just the two of us, enjoying one-on-one time. D, as a new 6 year old, loves "special time" with his Mama. And we usually go to get ice-cream, which we both love!

Anyhow, we were sitting in Baskin-Robbins enjoying our sundaes when I had a flashback to coming there when A was only a few months old. A had been in the NICU for 12 weeks, and she was home for 7 weeks before she was readmitted for 4 weeks due to getting a tracheostomy. During those 7 weeks at home, we rarely left the house; I was terrifed she would get sick. We would take D to school and pick him up, and of course go to millions of doctor's appointment, but other than that we were housebound. And even after A got her trach, we stayed in for the most part. I was too nervous...not only about A getting sick, but how was I to handle 2 kids by myself? A was a medically-fragile infant with a tons of medical equipment that needed to be lugged around with us (her suction machine, her Kangaroo feeding pump, not to mention the usual sundry items that any infant needs) and D was a rambunctious 2 year old boy. How could I tend to A's needs while keeping an eye on my son? I was going stir-crazy inside the house, and simply going to doctor's appointments and taking my son to and from school wasn't enough. I just needed to get out someplace different.

The answer was Baskin-Robbins. Soon after coming home from her tracheostomy, I started to take both kids once or twice a week to get ice-cream. Baskin-Robbins was ideal----close to my house, inexpensive, and best of all, it was a small one-room place where my son could run around if he chose, without me having to keep a close eye on him or fear he would get lost. We went there quite a bit during A's first year.

Now, of course, I'm a pro at doing it all by myself. I've taken the kids by myself everywhere from mundane places like mall or supermarket, to exciting places like Sea World or to the San Diego Fair, where we see shows and go on rides. Of course it totally helps when my husband is home, but since J works, he is only home on weekends. I had to break out of my fear in order to have fun with my kids. It also helps that now A is no longer on the Kangaroo pump---even a few years ago we had transitioned to bolus feeds, which were easier to carry. It also helps that as my son gets older he doesn't run off like he used to do. But still.

So, sitting this week in Baskin-Robbins reminded me of my spiral dance---how far I've come in being able to not only adequately, but 100% competently take care of both kids at the same time. A huge milestone in my book, and one I actually reached a few years ago. I'm proud to finally acknowledge it!

May 27, 2010

IEP Time!

Monday we had A's second IEP. Ours is an annual IEP (reviewed throughout the year) but this was the big one with a million people crowded around a small table discussing my daughter. Last year I was very nervous for the IEP, but this year I knew what to expect, so I wasn't nearly as nervous.

Just like last year, we had tons of people present: the school psychologist, the program director, her speech therapist, her adapted PE teacher, her deaf/hard-of-hearing (DHH) specialist, the vision specialist who assessed her at my request, the resource specialist, the district nurse, A's preschool teacher, the preschool director, a school psychology intern, my husband, and myself. The only person missing was her physical therapist, who couldn't be there but sent her reports and new goals. Whew!

As I expected, all of the reports were glowing. A has met, and in most cases surpassed, almost all of the goals set for her last year. Now that she is fully walking, she has blown her PT and P.E. goals out of the water. And she has progressed very well with her language. Articulation remains hard for her, as she has the trach, paralyzed vocal chord, and scar where her cleft lip was repaired to contend with, but it's getting better. She is bright, and again didn't even qualify for a resource class: she knows her colors, shapes, capital letters, some lowercase letters, can count by rote to 11, can count objects, etc. All in all, she is doing fantastic.

The team decided to keep the same services she is already receiving (two hours a week of speech therapy, an hour of week of adapted p.e., and half an hour a week of physical therapy). However, they are adding a new service: half an hour a week of DHH therapy, which I think is learning more how to listen, which is great for her hearing loss. I am pleased.

Here is what I am not pleased with: once again, like last year, the team recommended a Special Day Class (SDC). Why? They gave me two reasons:

1) If she goes to an SDC, all of her services will come to her in one place. Right now they are splintered, meaning that I am taking her to different places every day to receive the services. But really? I don't care. This is my JOB. I am a stay-at-home mom for a reason; I truly don't mind driving her about town.

2) They say that the SDC is a very language-rich class, with teachers who work with kids with needs. However, A goes to preschool already, in an inclusion program, and I believe THAT school is also language-rich (and hey, what preschool class ISN'T language-rich, anyway!?!?) And because it's an inclusion program, the teachers there are trained to work with kids with various needs.

3) They didn't list this as a reason, but I believe that they HAVE to offer a SDC to cover their butts. They don't want me, as a parent, to come back in 5 years if A isn't doing well at school and ask why they didn't offer an SDC in preschool. They have to have a paper trail showing that it was all offered.

There is nothing wrong with an SDC. I have some friends here in real life whose kids go to an SDC, and I know I have many anonymous readers whose kids do too. However, I don't feel it's the best placement for A. She needs to be around typically-developing kids; she is one of those kids who will rise to whatever challenge is posed to her. And cognitively she is right where she should be: all of her test scores, from IQ to language, put her in the average range.

The preschool where my son D went, which was through our synagogue, wouldn't have been the right fit. It was too academic and they couldn't handle anyone with needs. An SDC isn't right either; I need A to be with kids at or above her level, rather than at or below. We have found the perfect school; the inclusion program means that the majority of the students are typically developing, but they take a few kids with needs of various types, and the teachers are trained in how to adapt to the needs. A is getting the best of both worlds.

So, we declined (once again) the offer of an SDC. She will continue at her current preschool, but this time 3 days a week instead of 2, and will receive all of the above-named school services. We will also continue to get PT and speech therapy privately at Children's Hospital, and do horse therapy as we've been doing for the past 2 years. And next year we'll have more free time, so we can do a ballet class, or soccer, or gymnastics.

All in all, it was a great IEP. I am so proud of A and it was great to hear so many wonderful things about her! I hope we are making the right choice for her, given my fears last month, but I truly think we are. After the IEP, her therapists all came up to me and told me they agreed with me. And we can always reassess if I think that A is falling behind. But knowing my daughter, she won't be!

May 19, 2010

O-U-T spells OUT!!!!!!!!!!!

Today I got the news I've been waiting for: a surgery date for my daughter, A. On July 15, she will go into the O.R. where she will be seen by 3 of her surgeons. Her ENT will do a scope down her tracheostomy to see if she is a "candidate for decannulation" (his words); her GI doctor will do an endoscopy down her esophagus to look for any signs of reflux; and another surgeon will remove her g-tube (feeding tube). She will spend one night in the hospital, to watch for infection after the removal of the tube and the subsequent stitches.

This will be our third summer in a row where the ENT and GI doctors have scoped her in the O.R. Each year I get my hopes up that the ENT will decannulate her, and every year he says that she is not ready yet, that we will look again next year. I still have hopes that this summer will be different, that he will think she's ready to begin the process of taking the breathing tube out, but after our appointment a few weeks ago I really don't have HIGH hopes.

So, I am going to focus on the amazing item on the agenda---she is getting her feeding tube out! Hallelujah! I never thought this day would come!

A has been on a feeding tube since she was 2 days old. After she was born (and before we knew anything was "wrong" with her besides the obvious cleft lip) she lost almost a pound (15 ounces) in the first 2 days. I was desperately trying to nurse her, but she just couldn't nurse due to her vascular ring, which was a blood vessel coming from her heart and wrapped around her esophagus and trachea, making it hard for her to both eat and breathe (and, of course, eventually leading to her getting a trachostomy and feeding tube inserted). She had an NG tube for the first 2 months (which was a feeding tube through her nose) and when she was 2 months old we opted for the g-tube to be inserted in her stomach (otherwise known as a mic-key button).

A was fed exclusively through the feeding tube for the first year. I was determined that, like my son D, she would get my breastmilk for a year, and by golly I DID pump my milk for an entire 12 months for her. I produced so much milk, in fact, that I not only did I feed my daughter for a year but also donated something like 51 liters of milk to a milk bank. When she was almost 6 months old, she began to eat a bit of baby food, with the help of our wonderful occupational therapist. I remember our OT putting some baby food on a washcloth, and A began to suck on the cloth. It was amazing...for the first time my little girl was putting something in her mouth! Little by little, she would eat baby food....eventually she branched out and ate solid food (her initial favorites were bread and blue cheese!)

Of course, it was a long time before things progressed. Soon she began to eat more and more food, but wasn't drinking. We had to continue to use the feeding tube to keep her hydrated. We'd give her bolluses of water throughout the day, and overnight we'd use the feeding pump to slowly dose about 500 cc of Pediasure. I knew if we could only get her to drink, we'd get her off the tube. But she wouldn't drink. I remember her once eating a peanut butter sandwich on a hot day in the summer, and offering her some water; she wouldn't take it. Anyone else would have---the combination of the heat and a sticky sandwich would make most anyone grab a drink! Not my daughter.

Finally, last summer, with the blessing of our OT and nutritionist, we began to withhold water from her. I realized that she was never thirsty....we were constantly giving her water bolluses throughout the day, and therefore she never knew thirst! So we tried different times where I would not give her water when I usually would, hoping to get her thirsty. During these times I would constantly offer her drinks (water, milk, juice, ANYTHING!), so withholding really isn't the right word; I guess the right word would be offering her an alternative. Of course, at the first sign of dehydration I would go ahead and give her water through her tube. We experimented like this several times, each time lasting only a day or two.

Then, on July 18, 2009, we gave her one last water bollus and decided to experiment once again with withholding liquid through the tube and offering it orally instead. This time it worked! Ever since that day, we have not used her t-tube for anything---not for water, Pediasure, medicine, etc. It has been literally unused. For some reason, that day she was ready...and has drank orally ever since. She needs to use a sippy cup with a straw, although we are now working on an open cup and have been having success with the doidy cup. She has been maintaining her weight, and in fact has been gaining weight at the rate she was when she was ON the feeding tube--only this time she is doing it all by herself! And she has not been dehydrated at all, even for a day.

I never though this day would come, but in less than 2 months, A will have the feeding tube removed. It will be 4 years (minus 3 weeks) since she had gotten the g-tube placed, and almost a year to the day since we used the g-tube last. Even if she doesn't get her trach out, this is such a huge accomplishment. A huge reason to celebrate.

May 18, 2010

Miss Motivated

We had the coolest physical therapy session (PT) today! (We actually have two is paid for by our insurance at Children's Hospital, and the other is through our school district.) Today was our weekly session with our school district PT. Since we have our annual IEP next Monday, she wanted to re-assess A to see which goals she has met and set some new ones.

First, she read off her notes from her initial assessment with A, which was done in mid-October...only about 6 months ago. She had jotted down that at that time, the longest A had walked independently was 10 steps; that she cruised all the time holding onto furniture; that she used her gait trainer (walker) to get around her classroom; and that she could not stand at all independently. In only 6 months, A has blown that assessment to bits. Today she walks 100% of the time independently, has walked at least 75 yards that I know of, can stand perfectly still in one spot for a while before losing her balance, and her gait trainer is collecting dust in the garage, ready to be donated to someone who needs it. Heck, last month she did her first race, a 50 yard Toddler Trot!

The PT kept expressing that she couldn't be more amazed at A's rapid progress. She did not do an official inventory (she had done the Peabody in October, but you can only do it once a year to be valid so she couldn't not repeat it today). She said that A had scored in the less that 1% bracket in mobility for her age. Of course, we don't know her percentile today, since she did not do the test, but without a doubt A is catching up. She said that not only is A gaining ground, but she cannot believe how QUICKLY she is doing so!

The best part of the session, however, was the PT talking about A's personality. She said that A is very motivated, and that motivation is something that cannot be taught. You either have it or you don't. According to her, it is very difficult, as a therapist, to work with a child who is not motivated; it's like pulling teeth to get anything done. But A IS motivated. She is very social, and wants to be like her older brother and her peers at school. She works hard every session, and this has paid off in spades.

Above all else, hearing how motivated my daughter is put a huge smile on my face. With motivation and hard work, there is NOTHING A can't accomplish, whether it is with her gross motor, language, or cognitive skills. I am so proud!

May 15, 2010

Feeling better!

If you read my last post, you know I was really down about A's language delay. I hate feeling down about it---the fact that she is speaking at all is amazing and a miracle unto itself. I guess it's just that she is doing soooooooo well in every other area of her life (we're getting the feeding tube removed in a few months, she is now walking, she is thriving at school, etc) that when one area doesn't show the same rapid success I get sad.

The thing is, I have to remember that nothing she has done has had rapid success! She is walking, yes, but not until age 3 1/2! It was a long road! And yes, we are getting her feeding tube removed soon, but she had been on a feeding tube since she was 2 days old, and it was a long process getting her to eat, drink and in the quantities it requires to maintain her weight. So why should I expect speech and language to go any differently? She IS getting there....just on her own time frame.

This week, not only did she use the word "are" and "him", but she also answered several "wh" questions, including "which of your friends do you want to see at school today?" and "what was your favorite thing at Sea World today?"

She is on fire....and she is a blaze of glory.

May 11, 2010

A gift, just in the nick of time

Although life has thrown me a lot of curve balls in the last few years, I rarely allow myself to feel bad about it. Sometimes, though, I need to throw myself a pity party. Usually it's one of two things that will trigger it: either I'll feel sad about my husband being diagnosed with Young Onset Parkinson's Disease, or I'll feel sad about all of A's health issues. However, the pity parties are few and far between, and usually they don't last very long.

This past week, however, I've been in a bit of a funk. It started last week when our ENT told me that he wasn't sure if A's trach will be removed this summer. I've been holding out a lot of hope that it would be, and although there still is hope (we won't know anything until she goes in the OR this summer and is scoped) I left the visit with a sinking feeling. I desperately want it removed, and the thought of yet another year--or more---is really depressing. It just is.

Yesterday my funk deepened. A's speech therapist (well, the one she has at through the school district...she has another speech therapist paid for by our insurance) told me that the IEP team, which meets in a few weeks, is probably going to recommend a Special Day Class for A next year. They did this last year, too, and instead of placing her there, we put her in an amazing and very well respected inclusion program at a private preschool, where she has been thriving. To me, there is no reason to place in her a Special Day Class...her IQ is right where it should be (smack in the middle) and cognitively she is with it. Their concern is her language delay; in particular, that she doesn't answer "wh-" questions very well. She DOES have both a receptive and expressive language delay, which is caused by many factors. The thing is, while she does have issues answering some "wh-" questions, other ones she is getting down.

I feel that placing her in a class with kids who have cognitive abilities beneath her won't challenge her, whereas I've seen first-hand this year that placing her in a class with kids whose cognitive abilities are at her level or above challenges her...and trust me, this girl is motivated and rises to meet any challenge. The speech therapist's only reasoning for their recommendation is that at a Special Day Class there would be more speech-related activity. However, I am confident that the school she is at, which again, fosters inclusion and strives to meet the needs of everyone, including "special needs", is enough. Plus, she is getting 2 1/2 hours a week of speech therapy, which I am trying to raise to 3 hours a week.

But I digress.

The point is, this week I've been wallowing. I was even talking to one of my closest friends this afternoon and started crying about it. Luckily my friend was able to point out all A's progress, and how amazing she is.

Then, tonight, when we returned from being out, we pulled in the garage and A said "we are home". Usually she would say "we home"....but she said "we ARE home." And when I was getting the kids ready for bed, D was in his room and A and I were in her room next door. And A said, "Where's D? I want to see him". HIM!!!!! I have NEVER heard her use a personal pronoun like that. Sometimes she says "I", but I've never heard her say "him", "her", "she" or "he".

These were gifts. A reminder to me that, like I always say, a delay is just that: a delay. It doesn't (necessarily) mean never. This child will get there yet. I know it in my heart. I just don't always know it in my head.

May 8, 2010

Thoughts on mothering my daughter

I got pregnant with A when D was about 18 months old. After having such a wonderful experience having a son, I desperately wanted another son, so that I could repeat the experience, plus give D a brother. When I found out in the ultrasound that I was having a girl, I cried (in much the same way I cried when I found out I was having a boy the first time around!) Soon, however, I was excited to have a daughter and experience having one of each gender.

When A was born, things began to go wrong very quickly. When I first saw her, I was shocked by her cleft lip, so it took me an extra few seconds to fall in love with her. Within 30 seconds of meeting my daughter, not only was I madly in love, but was fiercely protective in a way that only the mother of a child with medical issues could feel. I was (and still am) very protective of my son from the get-go, but with A, my mama-bear claws and instincts came out in full-force from the first time I laid eyes on her. I have had to deal with (talk to, hire, fire, and question) many doctors, therapists and teachers in ways that I never thought I could (some good, some bad).

Therefore, A taught me that a mother will fight and advocate for her child, well beyond her comfort zone, if it means getting the best care.

With my son, the only medical care he requires is a vitamin every night and to make sure he gets his well-child checkups and immunizations. With A, I have had to learn to care for a feeding tube, tracheostomy, and clean stomas; learn machinery such as suction machines, oxygen tanks, feeding pumps and hearing aids; and keep a schedule of seeing doctors and therapists that would make most people's heads spin.

Therefore, A has taught me that sometimes caring for a child is scary, but no one could do it as lovingly or as accurately as a parent.

When A was in the NICU for 12 weeks, and we kept getting more and more bad news about her health, I was prepared to bring home, quite frankly, a vegetable. Hearing that she had had a prenatal stroke and that she might be in a wheelchair her whole life (which never came to pass, by the way) made me already make plans in my head to sell my two-story house and buy a one-story. Getting her feeding tube made me fear that she would never eat by mouth (and now she is getting it removed). Hearing that she had no semi-circular canals and low muscle tone made me wonder if she would ever walk.

Therefore, A has taught me that often doctors will give the worst-case scenario, but every child is different and never to give up hope. At the same time, she has taught me acceptance. For example, some things are resolved (like eating and drinking and walking) but some thing will never be (she will ALWAYS be deaf/hard-of-hearing).

Before A was born, and I already had a healthy son, I didn't really think about "special needs". Now, I am very aware of the many needs children have, whether it is physical, mental, emotional, medical or behavioral, and don't see "special needs"...rather, I just see a child.

Therefore, A has taught me that we all have needs, in one capacity or another, and are all in need of special treatment and TLC.

It often takes A longer to learn or do things that come easily to other children. She ate orally at 1 year, drank at 3 years, and walked at 3 1/2 years. She (almost always) works her hardest in her therapies and at home. She WANTS to succeed.

Therefore, A has taught me tenacity and perseverance.

A has taught me so much and I could not be prouder of her. She is my miracle baby, my gorgeous girl, and I'm happy she's mine. I believe we were destined for each other.

Thoughts on mothering my son

It is no secret that I wasn't thrilled about having a boy. Not that I was against's just that I didn't know anything about them! I have two sisters, and no brothers, and therefore did not grow up with boy. I was a bit apprehensive. When I found out in the ultrasound that I was having a boy, I cried. As my due date approached, however, I got very excited. I fell in love immediately with D, literally one second after I saw him. He was perfect: healthy, beautiful, and mine. All my fears about boys melted away when I held him for the first time.

Therefore, D has taught me about the magic world of boys.

D is very much like me in so many ways. We are both bookworms, love music, like to find out about people, even look alike in several features. But personality-wise, he is even more like me. He loves to sleep, and like me when I was a child, practically needs a bulldozer to get him out of bed in the morning. He is stubborn, and we constantly clash and butt heads. We both like to own collections of things, whether it's every Star Wars item he sees or every book in a series I love. And he has a long memory, which is definitely inherited from my side of the family.

Therefore, D has taught me that I need to look within myself to get the best out of him.

D has a curiosity and thirst for knowledge. He wants to try everything. I remember when he was in preschool, and they offered optional enrichment classes after school. He did a session of soccer, and a session of karate. For the third session, he wanted to do ballet. Not because he wanted to actually LEARN ballet, mind you, but because it was something he hadn't tried yet (he ended up doing soccer again when he learned he'd be the only boy in the class). He really gets into his books, and reads them in the car because he can't put it down. He constantly asks questions that I can't answer and need to look up.

Therefore, D has reminded me about how fun it is to learn for the sheer joy of it.

Pre-children, I never went to temple, and hardly did anything religious. Now, we have Shabbat dinner every single Friday night, with challah that I bake myself, and we try to celebrate all the other Jewish holidays (at least the major ones) as well. We're even working on maybe getting to temple a bit more often.

Therefore, D has brought me back to my religious roots.

Before D was born, I had a fancy-free life. Since I was working, and therefore we were a two-income family, we had a lot more money and therefore traveled a lot more, ate out often, and did fun things such as buying season tickets to see Broadway musicals. After D was born, I stayed home with him, and money got tighter. Travel is rare, I cook most nights. and getting a pedicure is a luxury I used to take for granted. In return, I get family time, home-cooked meals, kisses and cuddles from my son, pictures drawn and stories made up just for me, and the satisfaction of knowing that above anyone else, I have the most impact on molding this young boy into the wonderful man I hope he becomes.

Therefore, D has taught me selflessness, boundless joy, and unconditional love.

I love my son, with all my heart, and am so proud and honored to be his mama.

May 5, 2010

Trach News

On Monday I took A to her ENT (ear, nose and throat specialist). He is the one who is charge of the decision whether or not--and when--to take out her tracheostomy. Each summer, for the past two years, A has gone into the operating room where they have put her under anesthesia and our ENT has "scoped" her, meaning that he looks down her throat to see if she is ready to take the trach out (otherwise known as decannulation). And each time, he comes to the consultation room after the scope and tells J and I that she is not yet ready. I get my hopes up every year, thinking THIS is the summer she will be decannulated, only to have them dashed.

Anyhow, in talking to him on Monday, I get the sinking feeling---AGAIN--that this year is not to be the year. A has some complications in her airway, including a paralyzed vocal chord and a swollen part of her larynx. Of course, he doesn't know anything right now; he needs to scope her to actually see what her airway looks like. And for the first time, he said that after the scope we might have options that we can discuss together. I'm not sure what those options are, but just hearing that there are options to discuss is new to us.

I realize how great A is doing, and feel enormously grateful. She has come so far in the almost four years she's been here...and accomplished more than I ever really thought she could. Also, I had a checklist of four goals I wanted for A this year. She is so far accomplishing 3 out of 4:

1) Walk. DONE! She has been walking full time since January, and even completed her first race!

2) Talk. DONE! She has a long way to go in terms of expressive language, receptive language, and articulation, but she talks all the time now, often in 4-5 word sentences, and is using language nuances such as gerunds and prepositions.

3) Eat and drink, enough so to get her g-tube removed. DONE! She has not used her g-tube (feeding tube) since last July, which is 9 months ago. We have already returned all the feeding tube supplies back to Children's Hospital Home Health. She is getting her g-tube removed this summer while sheis under anesthesia from the ENT scope. It will be gone.

4) Get her trach out.

Ah. That. The one thing we have literally no control over. No amount of therapies can help her airway get bigger, or unparalyze her vocal chord. There is nothing we can do for her except wait and see.

Even if she doesn't get the trach out, she will have met 3 out of 4 of my goals for her this year...75%! Even meeting one of those goals would have been miraculous, but three?

And yet....and yet I really want the trach out. Don't get me saved my daughter's life, and I have no doubt that she would be dead, or at the very least doing extremely poorly, had we not consented to it. But I'm tired of it. I am sick of lugging her suction machine around everywhere we go. I desperately want A to be able to go in a swimming pool, or the ocean, or even a half-filled bathtub. I would love to be able to leave her with someone other than my husband, our respite nurse, or my best friend, the only 3 people besides me who are trained to care for her trach. It would be heavenly to be able to drop her off at a friend's house for a playdate, or drop her off at school without me or the nurse having to remain on the premises at all times. I would love to be able to have more date nights out with my husband, in which I could hire a babysitter, rather than have to ask either our nurse or my best friend.

I have to make peace with the fact that the trach may be in another year. Or more. I would love it to be out by the time she starts kindergarten, which is 3 years from now, but in reality, I want it out this summer. And it just might come out. But just as easily it might not.

We will wait and see........again.

May 2, 2010

The Happiest Place on Earth

Last week my family took a trip to Disneyland. This was more than just a Disneyland trip to was the first vacation that we took, as a family of four, that did not include visiting our families. Both sides of our families live in different states, so whenever we take a trip it's to visit grandparents, aunt, uncles and cousins. Which is great. However, it was so nice to have a vacation all to ourselves. We only live 90 minutes from Anaheim, so it was very close. We had two days and one night there. It was A's first time in a hotel, and while it was D's third time, the last time he was in a hotel was when he was two, so this was his first hotel that he remembers.

We had so much fun! The first thing I did was buy an autograph book, which got used quite a bit. We met so many Characters, including Mickey Mouse, Alice, Tigger, Chip and Dale, and Goofy, among many others. Each time we met a Character we not only got their autograph, but we also posed for a picture with them. Of course, A tended to be frightened of the Characters, and wouldn't hug them. She would either bury her head in my chest, or just cry. We even met three Princesses (Ariel, Belle and Tiana) and she was NOT pleased about it. Poor baby was scared. When we returned from our trip, D taped each picture next to the appropriate signature. What a fun keepsake!

Many rides we did together as a family, but at different points we split up. D is now old enough to do the "big rides" at both Disneyland and California Adventure, such as Space Mountain, Splash Mountain, and the Tower of Terror. So one parent would take D on the thrill rides (usually me, as I love thrill rides too...they are never fast enough or scary enough!) and the other parent took A on more toddler-friendly rides. We did eat all meals together, including a fun Character breakfast where we paid for the experience of having several Characters come to our table, and took in two parades.

D has recently gotten into the music of Michael Jackson, so it was special for me to take him to see Captain EO, which they have brought back since his death. I hadn't seen the show myself in about 20 years....and it really held up!

One really neat part of the trip was going to see the Jedi Training Academy. This was a show at Tomorrowland, and many kids got called on to go on stage. D is a Star Wars freak, and was beyond thrilled when he was one of the kids chosen to participate in the show! He got to wear the brown Jedi cloak, learn how to operate a lightsaber, and eventually fought Darth Vader all by himself. It was certainly a high point, and an experience I'm sure he will remember for a long time to come.

We got to use a special guest pass for A, meaning that we got to bring her stroller in line with us (which is usually prohibited), and for rides whose lines couldn't accomodate a stroller we got to jump ahead a bit (ie wait to enter at the ride's exit, which usually bypassed some people). Because we carried A's tracheostomy equipment in the stroller, in particular her suction pump, we didn't feel comfortable leaving it out with the other strollers. For one reason, what if someone stole the stroller with her medical equipment in it? And for another reason, what if she needed to be suctioned while in line? Luckily, Disneyland is very accommodating with guests with special needs of all sorts.

Being in the hotel itself was nice. We stayed at the Paradise Pier, which is on the Disney property. A is still in a crib at home (we ARE getting her a bed for her birthday though) and instead of bringing the pack-n-play, we let her sleep in bed with me, while D slept with J. At first, when we went to sleep, she was sobbing "I want go home" but eventually she fell asleep. She is just not used to being in a bed, and although she has been at relatives' homes before and been fine, this was clearly a different sort of place for her.

Being away with my family meant so much, and while I am looking forward to our next visits with family, I am very much looking forward to doing more short get-aways with just my husband and kids. It was great to bond, have fun, get away, and most of all, create fabulous memories together.