Monday, September 19, 2011

Loathing Fear in Chico

Here is a great picture of Bean at the park this morning splashing in the water that was pooling up in the bottom of the giant sandbox.  It has a faucet up on top of a little hill that sends water cascading down the rock structure and into the sand below.  She absolutely loved it.  And although it was a bit warm today for the month of September (9 degrees over the norm I heard), it was a great park visit.  I thought we were in for a great day.  Boy, was I wrong!

I had to return the rental van from this weekend's debate trip, which meant moving Bean's car seat from our car into the 12 passenger, driving to Enterprise and sitting around for about a 1/2 hour waiting for a ride home.  Bean was actually really good during the wait, but it was still a wait I could have done without.  Especially when my phone died as soon as I sat down, so I couldn't access email or get anything done while I was there.  We finally got a ride home and I really thought that Bean would take a nap, but it just wasn't in the cards.  It seems more and more that she goes without a nap unless she is driven somewhere for a long enough time that she falls asleep.  Which happened a couple of hours later when I was taking her to Kids Park to drop her off.

Last time she was at Kids Park, I left her there for a longer time than usual (about 4 hours total) because I had two work meetings in one morning.  She attended their pre-school from 9 - 10:30 am and that went well, but afterwards, during open play, I guess she was running and bumped heads with another kid and just lost it.  I got a call as I was going into my second meeting saying she was crying and could not be consoled and asking what they could do.  Since I was on my way into a meeting, I was caught off guard and could think of nothing.  Great mom, huh?  Can't think of one thing that consoles my child.  Well, I actually thought of the bottle, because that definitely consoles her.  But, because we have gone to only three bottles a day, I had not taken one with her because her afternoon bottle is not due until 2 p.m. and I would be picking her up at 1 p.m.  I also had forgot to pack a pacifier or any other comforting item.  So, she cried and screamed and threw things I guess.  She finally calmed down after about 10 minutes and she was fine when I went to get her.  BUT...she has a memory like a steel trap and once something settles in there its hard to get rid of it.  So, she has been whining a bit every time I bring up Kids Park.  I really should have known better, but I thought she would get there and realize how fun it is.  I also knew she was super tired today, but I had no other child care options and needed to go to work.  So, I dropped her off about 3:20 pm and headed into work for my 4 p.m. class.  At about 3:45 pm my office phone rang and I immediately recognized the number as Kids Park.  My heart sank...

Sure enough, she had got upset about being left there (even though when I left, she was happy to see me go and gave me a kiss and said good bye...20 minutes earlier...).  This time though, she cried so hard that she made herself sick.  This has been a Bean trait since early on in returning home from the hospital.  It kept me from making her sleep in her crib - the cry it out method made her puke.  And really, she would cry hard enough to throw up even if I was sitting there and just wouldn't pick her up.  She has thrown up in her big girl bed a couple of times from crying so hard.  If I sit and blow in her face repeatedly when she gets that upset, I can usually stop the regurgitation from happening.  But, you can't really make that part of your day care instructions - right?  So, I left work - at first panicking because I thought she was really sick.  I mean stomach flu would be disastrous right now, and she has been sleeping really poorly the last couple of nights.  So, I thought the worse - because FEAR is a constant in my life.  Although we have been incredibly lucky in her not getting sick at all since the transplant (knock on wood), she is on immuno-suppressants and she has not had her flu shot yet this year.  So, I panicked.  It could have also been the fact that I went to bed at around midnight last night and woke up around 5:00 a.m. this morning, with a wake up scream/cry or two from Bean in the midst of that five hours.  I swear that R.E.M. is only a band name from my youth and not some type of restful sleep that I reach every night.  I feel as though sleep deprivation may be reaching extremes...and the exhaustion makes me act like a hormonal crazy person.  So, I cried, cancelled class and went to Kids Park to get her.  She was still crying when I arrived.  Her face was puffy and red and she was clearly miserable.  But, she had no fever, she was breathing fine and she immediately perked up when she saw me.  She complained of her ear hurting when we were walking to the car, said that she didn't want me at work, and promptly said she wanted french fries.  At this point, I am definitely not happy.  I feel guilty - why didn't I just hire her babysitter to come over - who she loves?  To save $2.50 an hour?  To "socialize" her, when I am convinced that much of that socialization is just teaching her bad habits like screaming, saying no defiantly or "mine" constantly?  Really, I kind of thought it was a fun place and she seems bored at home so much of the time.  But, I think Kids Park is off the list of places to leave her for a little while.  I just think she's going to be slow to reach a certain level of independence.

And, I guess that's okay.  She was, after all, laying in a hospital bed hooked up to machines and unable to be held or cuddled or loved on for almost the first five months of her life.  But, every time I hear myself saying that or read it as I write it, I think I sound like one of those crazy people who justifies their ridiculous actions by saying that it is because of something that is really not related to the other thing.  I mean, what if the crying until she throws up is just a thing she does because she knows it allows her to get her way?  It seems really extreme...and when she is in the midst of one of these episodes, she really does look uncontrolled.  She looks like she can't stop crying and is really in the middle of something painful.  So, I can't imagine that she does it on purpose.  But, heck, I could just be taken for a ride.  Who knows?  All I know is that I still have the FEAR in the pit of my stomach anytime she even seems like she may be getting sick.  And I LOATHE that FEAR!  But, its not going to go away.  It will never really go away.  Its kind of like a toothache that is always there, but you get so used to it that it doesn't bother you until something cold hits it and then its this shooting pain that is unbearable for a temporary period.  Today was something cold hitting that dull fear and it became unbearable for a temporary period.  But, now its over and we're back to the normal dull fear - we'll go to the eye doctor tomorrow and visit the pediatrician just to make sure nothing serious is going on and next week we'll go to Stanford for clinic and I will hope and trust that everything will come back fine and we will continue on. But, that fear is still there.

Another family that is on a pediatric heart transplant email list with me got a shot of that sharp pain today and it won't be as temporary for them.  Their son, who is now 13, received a heart transplant as an infant and now needs not only a new heart but a new liver as well.  My heart goes out to them...I can relate to their pain.  And I dread the day that I will have to deal with something similar.  And maybe we never will - maybe our luck will hold out and Bean will keep this heart for 20+ years.  But, I guess the point is, we won't know...

Anyways - she is doing well now and I think she is really healthy.  I think just like she is growing physically a bit more slowly than others, she is also growing emotionally a bit more slowly than others and she has hit her point of separation anxiety.  She has also started to show some signs of the "terrible twos" as she gets closer to her third birthday.  So, we may just be running a bit behind schedule with some of these typical "milestones" the parenting books and magazines talk about.  We shall see.  But, for now, we'll just keep on dancing...

Monday, September 12, 2011

Things I Love About Chico #1 - Fantastic Foodiness

Today's post is a bit of a departure from my posts as of late.  I am going to try to increase the number of posts on the blog as well as the diversity of posts - so, if you only read to follow Bean's story, you can skip this one as she is but a bit player in today's post (there are some pics though - she loves to have her picture taken, so its inevitable).  But, I will continue to cover her health care story...I will just be writing other things in between.  I'm going to attempt a blog schedule and my Sundays (when I post on Sunday) will be Things I Love About Chico posts.  Simply because I love Chico and its a good way of introducing my readers to some of the things we get to experience up here in the Northern Northern California area! 

I am getting ready to head out to my third Taste of Chico.  For those unfamiliar with this type of event, let me explain.  The city's (and surrounding area's) restaurants, caterers, stores and other businesses set up a booth on downtown streets and provide small "tastings" to ticket holders.  You buy pre-paid punch cards for so many food and drink tastings and the vendors punch them as they provide your tastes.  In addition to the food, there is a beer/wine garden for adult beverage tasting, bands playing all day in multiple places and a lot of coupon/discount offers from many vendors.  Its a really fun and tasty day and you get to sample some food that you might never otherwise know about.  I discovered one of my favorite Chico foods at Taste of Chico two years ago - Bacio's catering and their BBQ chicken or pork sandwich!  I've now eaten multiple things at Bacio's (which has a counter service as well as catering) and all of them have been fantastic - but without Taste of Chico, I may have never eaten there!  This year will be especially nice because it isn't horribly hot (it has often been in the 100s, but right now it is high 70s and at the peak today it will only be 92), which will make the whole experience much more enjoyable!  I can't wait to make a new discovery this year!

Speaking of new food discoveries, I have been participating in Upgraded Living's "Secret Menu" challenge and so far it has been a blast!  Basically, the challenge is to visit 18 local restaurants in the month of September, order the "Secret Menu" item listed in the magazine (some are not actually secrets, but are just the hidden gems on the menu), take pictures and post them on the magazine's Facebook page.  They are giving away $50 gift certificates to each of the restaurants and a $200 cash prize to one participant.  So far, I think I've been to the most places, but its still relatively early in the month.  But, it has been a lot of fun to try new places and new items at old places.  It is amazing how a relatively small city like Chico has so many great places to eat and so many hidden little places around town.  I think I'm close to being half way done with the 18 places and so far there has really only been one thing that I would not get again - and it is not a reflection of the restaurant, but the fact that their item was a gluten-free pizza, which wasn't bad, but not having a gluten allergy, I would prefer my usual pizza crust, thank you!  But, its nice to know there is a pizza option for those with gluten allergies in town!  I have gone to three new places due to the challenge (Donut Rising, Farm Star Pizza and Left Coast Pizza) and ordered a bunch of new and really good items at places I had been before.

Because of these food adventures, Bean has tried some new foods as well.  She really liked the donuts

 and very much enjoyed the dough on the pizza from Farm Star Pizza.

I have always loved the food choices in Chico, but this is bringing me a whole new appreciation for the variety and quality of food here!  Thanks Chico!  I'm not a foodie, but I love food and Chico is perfect for a food-loving non-foodie like me!

Finally, the last food thing I love about Chico is the Saturday Farmers' Market.  Its a year round farmers market with lots of great produce, some specialty food items and great gift possibilities from local artisans. This past weekend, my friend Theresa and I took some photos to give you a "taste" of this local event.  Enjoy!

Friday, September 9, 2011

Milestones Met as Time Flies

September 2009
It sometimes seems like a lifetime ago that we were finally coming home from the Ronald McDonald house in Stanford to a new (to us) home in Chico and life was becoming a new normal.  It wasn't too long before the developmental therapists from our Far Northern Regional Center began to visit once a week.  For Bean, it was play time - she got to play with different toys, sing songs and have someone devote 100% attention to her for an hour.  She loved it.  Our first therapist was pregnant and went on maternity leave...and we were sad.  But, her replacement ended up being great as well and new toys were introduced and the attention was still there, so Bean still loved it.  Watching the therapists was also a benefit to me.  I learned the developmental milestones they were looking for, I learned the toys and activities that would help Bean reach those milestones and I soon acquired toys that worked on the same skills. I wouldn't say that I "worked" with Bean on the skills, but I definitely "played" with Bean in the hopes of her reaching her goals.  And every report, she got closer and closer to her adjusted age (because of her being a preemie, she was adjusted to her gestational age).  

Well, as Bean's third birthday draws nearer (how did that happen?), a bittersweet realization was reached last week as her latest evaluation was being performed.  Bean has officially "caught up" - she is considered normal in almost all areas of development (she is a bit behind in fine motor skills and self-help skills, but these vary greatly by age, so it isn't considered to be a problem as long as they are close to their age)!  At three, the Regional Center transitions clients into the local school district.  But, we will not be transitioning because Bean is now not in need of additional services.  I say bittersweet because the attention and the training was great to have.  I think it really helped me help Bean and to cope with some of her challenges in a constructive way.  I was not afraid to challenge her because I saw her being challenged by someone else and saw her enjoying the challenge.  That confidence is harder to find on your own, I think.  But, I am so very thankful that she has been able to catch up - physically (she is walking normally for her age and she is even on the growth charts for weight now - 3rd to 5th percentile), linguistically (she's actually ahead in this area - not totally shocking since her parents are debate coaches and she spent a considerable amount of time, once out of the hospital, at speech and debate tournaments and even a two week debate camp last summer), and developmentally.  I hear/read so many stories from other families whose children are struggling because of their time in the hospital, their time on the ventilator and their time with a lack of full oxygenation from their heart problems.  We have truly been blessed with Bean rebounding from all those things in a relatively quickly and almost surprising way.  And for that, I am eternally grateful.  

I can not believe that we came home from the Ronald McDonald house almost two years ago!  Those first few months were a blur, but I still remember the incredible feeling of being able to dress Bean up in her flower costume and answer the door for Trick or Treaters in our own home:

In some ways, this seems like a lifetime ago - she has changed so much and done so much.  But, in other ways, it seems like not that long ago.  Last year, she traded in the flower costume for a cow costume and looked like this:

Which is not that dramatic of a change from the previous year...but, here she is a few weeks ago while on vacation:
The star of the show in Gigi's sunglasses...and the change from the previous year is pretty dramatic!  In two years she has gone from a teeny-tiny, tube-fed, broviak line wearing little girl to a now-just-tiny, food eating (and still three bottles a day drinking), line-free little lady!
And we are thankful everyday for her shiny, happy face (even when it isn't so shiny or happy).  She is loving life for the most part as a two year old and has not shown too many signs of the terrible twos yet (we're hoping THIS is not a developmental delay!).  She loves to talk, is really into starfish and jellyfish, can say "leopard shark" clear as day, and has fallen for Kipper the Dog (who can resist that adorable British accent?). She loves to play games, has a memory like no other (much better than mine now, which seems to be going downhill fast), is fascinated by bugs, loves loves loves her Music Together classes ("Songs!" is her first demand upon arriving in her car seat), is outgoing to a fault sometimes (I think she has scared other little kids more than once by barreling up to them and saying "hello" or "hold hand" if they are older kids), would stay in a bathtub overnight if it was allowed (but would demand "more water" intermittently during the night), and has just discovered a love for KidsPark.

Overall, I would say we're living a pretty normal life considering our daughter has a heart from another baby beating inside her right now...she takes medications (only five now) three times a day, she has to have an echocardiogram done about every two months now (something I have never had done in my lifetime - and probably something most of you have not ever had done) and a heart catheterization done about every four months now (something which terrified me the first time she had it done, but has now become quite routine) and we have to be careful of germs, especially during flu season (and flu season cometh...very soon).  Other than that, we're pretty run of the mill.  And that normalcy is pretty much a miracle!  Our miracle...

And, Six Years Later - Marking the Good Times

Hello!  Long time no write on this blog.  I have always included a link to this blog on my email signature to keep people reading Bean...