Wednesday, March 31, 2010

Things I Love Thursday - Parents of Sick Kids

For this week's Things I Love Thursday I am recognizing a special group of people - parents of sick kids.  Being someone who has to spend a significant amount of time in a Children's Hospital, I see a lot of these parents, but there was one who struck me as particularly poignant this past Tuesday.  We were at the hospital for a biopsy for Bean (result was a 1A...good news) and my husband and I were waiting to be paged, sitting in the cafeteria.  I observed a woman with her little boy and my heart was both saddened and totally filled by her behavior. Her little boy was hooked up to an IV and he had access lines sticking out the sleeve of his outfit - multiple access lines.  His hair was thin and although he was small, he was probably between 2 and 3 years old.  I believe he may have had cancer and receiving treatment.  His mom was talking him into trying different foods - eggs, toast, banana, she was trying it all.  He ate a little, but not a lot.  His mom was very supportive and understanding and as she loaded him back in his special stroller with the IV hanging out behind it, I saw that she was pregnant.
The strength it takes to deal with health issues for ANY family member is large.  But, dealing with a sick child is especially draining.  But, parents who find themselves with a sick child reach deep down inside, to a place we never knew even existed, to find the strength we need to be strong for our children.  I just read a post on one of the listservs I am on from a dad explaining how he often cried alone because he knew he had to be strong for his wife and child.  These parents are really no different then any other parents out there, but they are placed in extraordinary circumstances, with no preparation or training or practice-run.  And time after time, they find themselves being parents, advocates, nurses, companions, mentors, and they somehow do it all well.  It isn't easy or "normal" or what anyone planned for their lives, but it becomes "what we do".  I know that I found solace and guidance and somehow, even love, from perfect strangers who were just unlucky enough to find themselves in a similar situation to mine.
So, I am thankful for these parents.  I am thankful for the ones who helped me with information, with support and with guidance online and at the hospital.  I am thankful for the ones who are able to smile and laugh with their children despite grim circumstances.  I am thankful for the ones who are able to treat nurses and doctors with kindness and gratitude for all they do for their children.  I am thankful for the ones who are able to give their children the best lives possible, despite their children's health problems and corresponding issues.  And I am thankful for the ones who, like the woman in the hospital, can show their children patience and love and support, despite what is surely their own exhaustion, despair and desire to run away to brighter pastures.  I realize that I am one of these parents, and I am thankful I was able to find the strength to do this and to hopefully do it well.  But, I realize that there were so many people out there helping us - family, friends, health care providers - and others are dealing with this or worse without that same support system.  I am thankful they can find the strength for the sake of their children and their families.  '
So, if you know someone who has a sick child or you know somewhere in your area that helps people with sick children - a children's hospital, a Ronald McDonald House, a Pediatric ICU, a non-profit organization...please try to find a way to give something.  Money, time, food, support, supplies...there is always a need.  And even if they can't thank you personally, your gift will definitely be appreciated.  The Ronald McDonald House we lived in has a wish list - so, if you're in the Bay Area and would like to give something, you can drop off new infant pacifiers, teething rings and toys for 0-18 month olds, as well as hand-held electronic games, i-tune gift cards, or other teen items.  If time is more what you want to give, they are looking for people to help with their 2010 Summer Camp.  The themes are art, cooking, outdoor fun, and science.  If you are not in the Bay Area, a google search in your area will help you locate similar opportunities!
Thanks to all those out there who made this situation just a little easier for us.  Even though we may not have had a chance to say thank you in person, we really did and do appreciate the support and love!

Bean Meets the (Debate) World

We spent the majority of the last week at the Cross Examination Debate Association National Tournament held at UC Berkeley. Bean was finally able to make it out to meet a lot of the people who have followed her story online and given us a ton of support (thanks again really can't imagine what it has meant to us).  She had a great time and my only real worry is that she will be bored when she realizes she will not have hordes of people interacting with her everyday on a regular basis!
It was great to see so many people who I only get to see once a year at this tournament, and missed seeing last year because of Bean's delivery.  Bean was definitely a hit and seemed to make a lot of people happy, even if their tournament wasn't going great.  A few pics from our friend Marissa Grayson:
Marissa (photographer) and Bean at the hotel before the tournament began.

Taking a break between rounds - Bean naps between me and Karina...

Wednesday, March 17, 2010

Things I Love Thursday - Our Pediatrician's Office

In this day and age of health care woes and long waits to see doctors, I have decided to recognize how lucky I am to have a pediatrician (Dr. Asarian, Chico CA) who has NEVER made us wait more than a few hours to get Bean in to see someone.  They are always incredibly nice and even our transplant coordinators say how nice they are to work with.  Some may think that they are accommodating because of Bean's condition, but they were this way even when she was home the first time from the NICU and had no apparent health problems.  But, since her condition, they are great about having an examination room available as soon as we get there so Bean doesn't have to sit in the waiting room with any sick kids.  So, for my Things I Love Thursday, I am saying recognizing our pediatrician, Dr. Asarian and all of his staff for their wonderfully accommodating and supportive work with us!

Tuesday, March 16, 2010

No Feeding Tube, No Keys and a wonderful surprise...

The title gives it away, but the GI doc and the nutritionist in the GI department both agreed that Bean is NOT in need of a feeding tube, but is instead in need of more fat in her diet.  I definitely need to save this information to show Bean in the future, as its not often that docs are telling you to eat more fat in your diet.  They think she may have just got used to her hunger being driven by the steroids she was on post-transplant and for both her bouts of rejection, and now that her dosage of steroid is pretty low, she just doesn't feel the same level of hunger, so she doesn't eat as much.  So, they are prescribing some Periactin (an antihistimine that has a side effect of boosting appetite) for her and said to just make sure to give her very tasty and good fat fatty foods, like salted butter, avocado, etc.  They said to feed her whatever she likes right now.  So, she has eaten some chocolate pudding, tapioca (we went to Fresh Choice for lunch yesterday), cinnamon-raisin bread with butter, french bread with butter, a cookie (from Grandma last night), and her usual cheerios, baby food, baby cereal, etc.  She seems to be eating pretty well right now, so hopefully she will gain some weight in the next few weeks.  Her next biopsy is on the 30th of March, which gives her two weeks to gain some poundage!  I am just extremely thankful that I don't have to think about the prospect of a feeding tube!  Whew...

In addition to not having a feeding tube, we also have no keys to my truck.  It seems that between arriving at my parent's house after the doctor's appointment yesterday and getting ready to leave a few hours later, my keys left this universe.  That's right.  We made it home from the docs with keys, did not leave the house - really stayed in two rooms in their house - and we searched high and low and could not find them.  The only thing we could think was that I dropped them getting out of the car (a coffee cup fell out and started rolling away and I bent over to catch it...) and someone walked by and picked them up.  It sounds ridiculous to me...but, its really the only thing I can think of.  That or they were in the street and got run over and stuck in a tire and carried away - but that sounds even more ridiculous.  So, my hubby and friend had to drive to my parent's from my house - a two hour plus jaunt.  At least we had an extra set of keys...but, its still very weird...We didn't end up getting home last night until after midnight because of the key disappearance...long day...

But, when I got home, I was WONDERFULLY surprised by a spotless house!  Hubby and our friend spent yesterday cleaning, doing laundry, rearranging the bedroom furniture, unpacking the last of our moving boxes (yes, we moved in October and still had boxes), and even framing a great poster I bought while Bean was in the hospital in June and I never got framed.  It is now hanging above our bed!  The bed had the new bedding I had bought a couple of weeks ago on it (microfiber sheets - all I can say is get them!  So soft!) AND the mountain of laundry is now barely a molehill!  It was AMAZING!  Such a relief...and I really feel like I can get so much done now this week with that monkey of cleaning off my back!  They are truly amazing for doing that...

On a side note, I would like to share a resource with those of you who have young children.  I have been watching "A Place Your Own" on PBS and if you are looking for information, activity ideas, parenting advice, etc. it is a great resource that you should check out.  They have an online page as well if you can't tune in to the show.  

Sunday, March 14, 2010

Growth, GI...and Grrrrrrrr...

I have to say I have never been so glad to see a Spring Break as I am this one!  I have been traveling for Speech and Debate tournaments for the past five weekends and it has really put a huge dent in my ability to get ANYTHING done.  And I do mean ANYTHING!  I have a pile of laundry waiting to be done that rivals the surrounding mountainsides, I have mail and bills to go through, I have to get all of our paperwork together for taxes (ugh) and I am realizing that I don't really have any more structure or organization in my life then I did on January 1 of this year...which is a giant fail on my part.  I was really excited to be able to spend a week catching up and getting things in the house and my life all cleaned up and ready to roll for the remainder of the semester...but, I am now facing a sick husband (who can have no contact with the Bean while of the joys of an immuno-suppressed child) who is living in our guest bedroom so I don't get sick, yet another trip to Palo Alto tomorrow for a GI appointment and the possibility of Bean having to get a feeding tube.  This is where the Grrrrrrrr comes in.  But, let me start at the beginning.

I am off for one week of school for Spring Break.  I have a ton of grading to do, as well as paperwork for the Speech and Debate team, as well as some planning for upcoming projects, so I don't really "have a week off," I just have a week off from school, so no class planning, no office hours, no classes, etc.  Which is actually a huge relief and definitely makes getting caught up a greater possibility.  I thought the week was going to be Palo Alto-free as well, but at last week's clinic appointment, Bean only weighed in at 13 lbs. 6 oz.  Only 3 oz. more than at her appointment two weeks prior.  She had been a little inconsistent in her eating, so we mentioned that to the team and they sent in the nutritionist.  She told us we had to go back to GI for our follow-up appointment that we never went to after October.  I thought that since Bean was eating normally through the mouth and not having any stomach issues, we didn't need the follow-up appointment, but it seems she is falling further and further below the 3rd percentile growth curve for her age, and they want it taken care of.  She is super active, doesn't seem to be having any digestive issues other than some bouts with gas and a few bouts with diarrhea which they said the Magonate would cause, so on all accounts, she should be eating and gaining weight and growing.  The nutritionist mentioned that she may have to "go back to the feeding tube to insure she gets more calories."  My heart dropped.  Bean has been through so much that a feeding tube should really seem minor to me, but it has been the worst thing I've had to deal with since the transplant.  The broviac line was bad - especially changing the dressing - but, the feeding tube was worse.  Bean has an aversion to any line in her and tends to pull them out as quickly as she can figure out how.  She pulled out ventilators, IVs, main lines - she did it all when she was in the hospital.  And when she got out of the hospital with a feeding tube in her nose - she pulled it out too.  Twice.  I was able to put it back in once, but the second time, I could not do it.  I broke down crying, gave up and ended up having to have a nurse put it back in during a clinic visit.  I was so happy when they said it could come out and stay out.  And now I have to face the prospect of her getting another.  It really puts a damper on my mood!  I am hoping we can find an alternative...any alternative.

This also means I lose an entire day of my week - but, at least the appointment is not until 11 a.m., so it doesn't require too early of a departure or an overnight stay, which is good.  But, I am feeling really overwhelmed with the amount of stuff I have to/want to do and the short amount of time I have to do it all.  I really wanted to do a thorough cleaning of our house - a massive purge of unneeded stuff, a much-needed baby-proofing of our house, and some Spring Cleaning.  I also want to get the garage organized so I can store stuff out there and find it when needed.  Finally, I need to clean out and organize the guest closet, which holds all of my scrapbooking stuff as well as home office paperwork and files...which are all a neglected mess.  So, although I have a full week off of school, with the home stuff on top of the catching up with grading and paperwork, I feel like a have a very packed week.  Oh - and I have a lot of TV on my DVR I would like to get caught up on as well! :)  And on top of all this, my hubby came down sick a couple of days ago, which means he has to hole up in our guest bedroom, staying away from me (so I don't get sick) and staying away from Bean.  Which puts me on my own with the Bean until he gets better.  And she is a handful right now.  She has not been sleeping great - last night has been the best night in three nights - with her sleeping from about 11 p.m. until 4:15 a.m. without interruption (or without her crying loud enough to wake me out of my exhausted sleep).  The night before that was horrible, with her going to bed at 9, waking at 11:30, 1:15 and then up for good at around 5 a.m.  At least this morning, she went back to sleep after waking at 4:15 a.m.!  I am sure that we have made some huge error in Bean's sleeping habits and now will have three or four years of fitful sleep cycles, but its hard with her being underweight because if she's hungry, I don't want to miss out on feeding her, even if its in the middle of the night.  And its also hard because I think she has some issues with nightmares/terrors and I don't want to not go to her if it is that, as she needs the comforting.  Its just hard!

Bean is doing great the past month as far as reaching milestones - she finally started pulling herself to sitting position from laying down and now she can do it in record speed.  She can also pull herself from sitting to standing position with the aid of a piece of furniture.  She cruises all over the living room holding on to the furniture.  She still is not really crawling, although she will push herself backwards across the floor in a crawling position, so I think she is getting closer to crawling - hence the big need for babyproofing.

We were interviewed by the Butte County Far Northern Regional Center last week and they will be in touch with us to send out a Physical Therapist and Occupational Therapist to evaluate whether Bean is significantly behind developmentally.  For those unfamiliar, the State of California has regional centers that evaluate and provide services for children 1-3 years of age who show significant developmental delays.  If Bean is at least a third of her age behind, they offer in-home services for physical therapy and occupational therapy to try to get her up to speed.  Although I would be happy to find out she is on track developmentally, if we have to have the therapy, it would be nice to have it here at our house.  Considering the amount of travel we already have to do for her heart clinic and biopsies, it would be nice to have something right here at home!  They have not called for scheduling yet on that.  Knowing my luck, they will want to come some time this week as well!  But, it will be good to get her evaluated.

So, that's my life right now.  Its been the usual, more-or-less - too much to do and not enough time to do it.  But, so it goes.  Here's hoping the Spring Break is productive!

Wednesday, March 3, 2010

Not Vegetarian, But Maybe Meatless Monday?

I was reading Gwyneth Paltrow's blog Goop, which I love, even though its a little more high brow than my life.  Its nice to dream though!  Anyways, in early February, she had a post about a new campaign kicking off called "Meat Free Mondays".  Yes, I said early February.  I'm so far behind in emails, google reader reading, etc. that I am still back in early February.  But, hopefully I will soon be able to bring my online life to within two weeks of my real-time life.  We shall see.  Back to Meat Free Mondays though.  I have considered going vegetarian numerous times.  I have even tried to actually do it a couple of times.  But, in the end, I always come back to meat.  I like meat.  I like chicken, I like steak, I even like pork sometimes.  But, I realize there are environmental reasons, health reasons and even some ethical reasons for not eating meat.  Its just so difficult to give it up completely!  But, this "Meatless Mondays" concept sounds doable.  Very doable.

Meat Free Mondays was started in the UK and it has now moved in to the US.  In all honesty, there are a lot of days when we don't have meat in our meals, but we would probably do ourselves good to give up meat at a meal where we would otherwise have it.  The campaign is based in environmental reasons, but with Bean's heart, I am also aware of the health issues related to eating meat, especially red meat.  Bean is not eating much meat at this point in life, but it is a good reminder to us to cut back on the red meat.

So, here's to Meat Free Mondays - or whatever day you choose it to be during the week.  Its great for the environment and great for your health!

Book Review - Danny the Dragon "Meets Jimmy" by Tina Turbin and Contest!

Today I have a special blog entry!  I am reviewing a great new children's book called Danny the Dragon "Meets Jimmy" by Tina Turbin and illustrated by Aija Jasuna.  The book is about a little boy Jimmy who finds a special shell at the beach and brings it home.  Soon after getting the shell home, Danny the Dragon pops out of the shell with "bright red shoes," "a yellow backpack," and wings!  Along with Danny the Dragon, Skipper, a little frog with goggles and a note pad joins Jimmy's family as well.  The book has a great, simple story for small children and beginner readers.  It teaches subtle lessons, like helping the family with chores and sharing meals with families and friends.  The illustrations are incredible.  They are bright, colorful, and filled with joy.  The book offers something for every child's likes - for those who love their dinosaurs and dragons, there is Danny, for those who love magic and mystery, there is mystery of the talking shell and the special way that Danny and Jimmy are able to escape the shell and then return to the shell, for those who just love looking at pictures, the large pages are full of detail, color and joy!

In addition to being a successful children's book author, Tina Turbin is also an advocate for gluten free living for the purpose of dealing with allergies, celiac disease, and related health issues.  You can find more information on this part of her life at Gluten Free Help.  The book is only the first step in a series of Danny the Dragon items.  I will soon be doing a review of the CD and the DVD related to the book.  In addition to these items, she is working on related cookbooks as well.  The official Danny the Dragon website offers direct purchase links for the book and the CD as well as some wonderful contests for children AND parents or you can go to Amazon to purchase the book or the CD.  But, the CD is almost out of stock, so order soon if you're going to use Amazon!   In addition to her author's page, Tina also has a twitter account where she posts information about celiac disease and gluten-free living.

In the interest of getting more people to check out Danny the Dragon, I am having a contest!  I will give away three Danny the Dragon gift packs, with a Danny the Dragon pencil, a Danny the dragon sticker, a Danny the Dragon bookmark and a Danny the Dragon "Quite Please - I'm Reading" door knob sign, in a cute little zipper pencil bag!  In order to be entered you must go to the Danny the Dragon website and then leave a comment here saying why you think Danny the Dragon sounds like a good addition to your child's library.  You can get an additional entry by choosing to follow my blog!  Just leave a second comment that you are following my blog and how you are following it (reader, blogspot follower, etc.) - if you are already following - just tell me how!  I will choose the winners on March 10, 2010!

I am so happy to have this book on Bean's bookshelf!  It is sure to give us many evenings of great reading and great visuals to go along with the reading!  Thanks to the author for sending it to me to review.  I look forward to reviewing the CD and DVD in the near future as well!   Please check out the book and CD and support this wonderful, self-published author!

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...