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**Disclaimer**

**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**


Monday, November 29, 2010

Bacon Part II and another GI appointment

We fed the baby bacon again. This time went even better than last time. Before Raya came along, I never would have guessed that seeing my 1 year old play with and "eat" bacon would make me so happy. :)
We started out slow this time. She wanted nothing to do with it as long as Mommy was holding it so she ripped it out of my hand and started to pull it apart:

Tried to remember what to do with it:

Pulled it apart a little more:

(I missed the shot of one of the kids putting it in her mouth and the shot of all 3 kids trying to shove it in her mouth at the same time :)

BACON!!!

Testing out the new teeth (she has 2 on the bottom and 2 on the top now):

Loving all the attention from the big kids:

Practicing spitting it out, which is also very exciting because her typical reaction is gagging & vomiting:

Starting to panic a little when crumbs broke off in her mouth:

Using fingers to try & get bacon back out of her mouth (again, very exciting because normally she gags & vomits to get things out of her mouth):

I love BACON!! :)

Raya's other favorite thing in life besides bacon is Daddy:
Not sure what's up with the little tongue hanging out. It's been doing that again lately.

She loves to give really hard hugs and pat (i.e. hit) you when she hugs you. It's very cute but sometimes it hurts. She's strong. :)

Life would be dull without Raya around. :) She saw her GI doctor today. We took her this picture that was taken in January the day before our first appointment with her and a current picture. Her doctor looked at the first picture and just shook her head and said, "Wow, look at that. Her face just begs for help." She looked so skinny and frail and her coloring was terrible. Even her arms & legs were pale. The difference between 10 months ago and now is pretty amazing. She weighed 9.9kg today (21 lbs 13 oz) and I honestly can't believe how huge she is. She's growing out of clothes that Kaida was wearing at 16-18 months and for once I have a kid who can actually wear pants that don't have an adjustable waistband. :) Other than that (and a couple of vomiting episodes), the appointment was pretty uneventful. I told her about a couple of bad days that Raya had, like the day that her G tube drained 273ml (a little over 9 oz) and she threw up 3 or 4 times the same day. Some people have bad hair days but since she doesn't have much hair yet, Raya has bad motility days. :) Dr. S told me that those are the kinds of things that I need to write down so that I remember to tell the doctors in Ohio. I have my little notebooks (Raya: vol. 1-3) that have EVERYTHING written in them, but I'm going to have to go through and mark all of the important stuff I guess. Otherwise I'll never find what I need when I need it. I also chatted with her about the RIDICULOUS problems we're having with the insurance co. over Raya's formula & pedialyte, got updated rXs for her meds and adjusted a couple of the dosages, and talked to the nurse about getting a letter for TSA about Raya's medical supplies that we'll be flying with. I booked my ticket this morning so we're getting our ducks in a row. We leave 2 weeks from today and I can't believe we're going so soon but I'm looking forward to it. Except for the cold. There's a reason I don't live in Idaho anymore and the reason is cold. :)

Wednesday, November 24, 2010

More VERY Exciting News!!

I got a phone call this morning from a nurse at Nationwide Children's Hospital in Ohio and they put Raya on the schedule for December 13-17!!!! My first reaction was pretty much shock since the lady I talked to in October told me they wouldn't even be calling to schedule her for a couple of months and that it would be 4-6 months before she could get in. Maybe that letter Raya's GI doctor wrote that was pretty much begging them to get her in sooner worked. :) Anyway, it's still a tentative date but she should be calling me back sometime today to give me the final date. (**She called back & we're all set.**) Then the real work begins, i.e. making travel arrangements and bracing myself for taking Raya+feeding pump+formula bag+6 medications (4 of which are refrigerated)+syringes/gauze/scissors/medical tape+ice packs+G tube drainage bottle+regular luggage through the super fun new TSA full body scanners, etc. SOOOO not excited about the actual travel part of it but very VERY excited that we're going soon!

Monday, November 22, 2010

Raya wins this time

Friday morning I could have SWORN the c. diff was back/still here. I gave her the last dose of her flagyl (side note, I think that's a dumb name for a medication and I'm glad we're done with it just so I don't have to say or write "flagyl" anymore) and then I went to change her poopy diaper and it seemed very c. diff-ish to me. I collected a sample and called the doctor's office. Since her nurse was getting married Friday & her doctor was at the wedding, there was nothing we could do over the weekend. We continued to wear gloves while changing her diapers all weekend and then this morning they called and said that the test came back negative. Halle-friggin'-lujah! It's been a whole MONTH since she got it.
For some reason, her g tube output has been abnormally high today (as in over 200ml/about 7 oz) but at least the c. diff is gone (knock on wood!). And speaking of g tube output, we really REALLY need to figure out a better way to collect her drainage. This 3oz plastic bottle dangling from her stomach thing has gotten really old. Especially when it pops off and leaks on the floor. Any ideas are welcome. This is what we use right now:
We use the lid from a regular baby bottle that has the tip cut off, and put a straight port extension tube through the opening. We put a couple of layers of 2 different kinds of tape to make sure it doesn't come apart (ha ha) and put the lid on the bottle. It's an effective way of getting an accurate measurement of how much drainage she has in a day, which is very important, but it's cumbersome. It gets in her way a lot, especially when she's crawling around, trying to walk, or when she rolls around in her bed. It's gotten caught & pulled apart several times in the month that we've been using it and sometimes it leaks. And last but not least, it looks gross and I'm tired of feeling like people are staring, not that I can blame them. So if anybody has some bright ideas about how we could do this differently, I'm open for suggestion.

Saturday, November 20, 2010

Another week has flown by

This week has been a whirlwind of the everyday mundane tasks like giving Raya her 6 meds at their appropriate times (unless I got sidetracked and forgot got off schedule), staying up later than I sometimes feel like it so I can mix up her next 24 hours of formula, dragging myself out of bed to get the kids to school on time, spending HOURS (about 6 total) on the phone with home health & the insurance company trying to fix mistakes that both of them made & keep making (SOOOOOO frustrating!!), having 2 meetings to convert Raya's therapy services from early intervention to long term care, craft night at school, cooking night with young women from church, craft night at church, and all of the usual vomiting/g tube drainage/inconvenient blowouts in the morning/etc. And the likely return of c. diff for the 3rd time but we won't know until Monday. Hopefully it was just a fluke.
So yeah, that's why I haven't posted anything this week. The end.

Tuesday, November 16, 2010

Garbage disposals are disgusting

I was cleaning the kitchen today (shocking, yes) and thanks to its small size, which made it hard to see, a little bitty syringe met a tragic death in the garbage disposal:
The real tragedy was that I then had to reach into the garbage disposal, which I'm pretty sure is one of the most vile and creepy places on earth, to get all of the little tiny pieces of the syringe out of the disposal. After fishing around for a minute, I thought I had gotten all of it so I turned the disposal back on and more pieces came flying back out at me, which was much better than having to go in after them. We'll be more careful with the little tiny syringes from now on. :)

Then another gross thing happened. I was sitting at the table working on a sewing project that keeps getting interrupted when Raya crawled up my leg. Then I caught a whiff of the horrible smell that is her stomach contents and it was much stronger than usual. I looked down to see why and saw this:
That would be the bottle that's SUPPOSED to be attached to Raya's G tube to drain her stomach so she doesn't throw up as much and so that we can measure how much comes out of her in a day so that we know if she needs more fluids replaced. It was gross and smelly but not as gross as when she started throwing up today and simultaneously had the yellow stuff coming out her mouth, drainage tube, and from the port on her Mic-key button. Bless her little heart.

And last but not least, this is Raya's evening cocktail:
There are 6 of them right now but we'll be dropping one of them after Friday. (Do you see why I'm obsessive about writing everything down?) Here they are standing in a nice, neat row:
I have a love/hate relationship with them. I love #1 because it helps her to not gag loudly all night long but I hate that it's such a tiny microscopic dose (0.35ml, annoying). #2 helps reduce the amount that she throws up & that drains out of her stomach but it has an undesirable side effect and it's very sticky and smells like banana (don't like banana) and those nice little blue caps don't fit on it so it's hard to not make a mess with it. #3 has been delightful, I just hate that she got c. diff twice and needed it at all. #4 is heaven-sent and I love it even more because our copay for it suddenly dropped by $35. I don't mind #5 except that it can't be given within 2 hours of #4 but it smells like strawberry. #6 is a capsule that I have to dump the powder out of and mix with 5ml of water and then add it to her formula twice a day (or just put it in her J tube if/when I forget to put it in the formula) which can be a pain but it smells like yeast which reminds me of fresh baked bread. And there you have it. Hopefully soon we can cut a couple of them out of the routine.

Sunday, November 14, 2010

Exciting news with a BUT

We have some very exciting news! We have found a food that Raya not only acknowledges has a taste, but she actually seemed to LIKE the taste of it. This food is the ONLY thing she has ever willingly opened her mouth for more than once at a time EVER. She almost even leaned forward to accept the food, which by the way, I was putting in her mouth (another HUGE tipoff that she must have liked it since she doesn't like for me to put food in her mouth.) So what is this miracle food, you ask? That's where the "BUT" comes in. There's a food that she likes BUT the food is...
.
.
drumroll please...
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
BACON.
Yep, my 1 year old food-refusing, vomiting when anything is in her mouth baby actually likes bacon.
My baby is a carnivore. :)

We did let her demolish a pancake tonight too. She put a few crumbs in her mouth and then gagged & threw up. But at least we know she likes bacon. :)

Saturday, November 13, 2010

We have a new feeding therapist named Grandpa

We had a little birthday party for Raya and we've decided to let Grandpa be her feeding therapist from now on.

She let him put a quesadilla in her mouth.
I think she was trying to decide if it was food or not.
I still wouldn't say she liked it, but she let him
feed it to her more than once & didn't throw up. :)

It's all about the body language. :)

This pretty much sums up how she felt about
cupcakes, pudding, ice cream, and root beer. :)




Friday, November 12, 2010

How far we've come...

Where we started:
2 month old baby that weighed 8 lbs 8 oz (smaller than a lot of babies are when they're born), was malnourished, had no body fat and was miserable

When I took this picture I thought, aww, what a cute baby! Now when I look at it, it brings tears to my eyes because I just see a tiny, sick little girl whose eyes are asking for help. Dramatic of me, I know. :)

Raya had her 1 year well-check yesterday. It made me wonder if other moms of medically high-maintenance babies feel the same way that I do about well-checks, like that they're kind of silly and a waste of time other than getting immunizations. :) It also reminded me to be grateful for how incredibly efficient Raya's GI doctor's office is because we waited forEVER. It didn't bother me too much though because I had scheduled her PT for 9:00 and the doctor's appointment for 10:00 so I knew I'd have plenty of time to get from one to the next because they'd be running behind. :)

Anyway, here's the stats:

weight: 21 lbs 6 oz (9.695kg) 51st percentile
height: 30 inches, 73rd percentile (pretty sure that's incorrect, she's not that tall)

She's definitely our biggest baby. She outweighs Cole at 1 year by 1 lb 6 oz, Ashtyn by 3 lbs 9 oz, and Kaida by a whopping 4 lbs 10 oz. (She's only about 5 lbs behind Kaida right now & they're 2 years apart. :) Raya would have a great college fund going if I had a dollar for every time someone has looked at her and said, "If I didn't know better, I'd never guess she has any problems!" or "Oh, after reading her medical chart I wasn't expecting to see a healthy-looking baby." :) Looking at her now, you'd never guess that she was labeled with failure to thrive and poor weight gain. Tube feeding is definitely a blessing and a curse and sometimes it feels WAY more curse than blessing, but you can just look at her and see why doctors turn to tube feeding for their patients.


Fast forward to the present:

Big ol' 1 year old who looks pretty darn healthy if you ignore the bottle of stomach contents draining from her G tube and a big lumpy Mic-key button under her shirt! :)


Wednesday, November 10, 2010

Happy Birthday Raya!

Good morning, Birthday Girl!!


This was part of our ridiculous attempt at taking birthday pictures. Someone was slightly uncooperative. :)
 
One of the better attempts. :)


My favorite one of the day, even if she is playing with her extension tube. :)

♥Happy birthday, dear Raya♥

Hmmm...not sure what they expect me to do with this thing but at least it's fun to play with. (PS the frosting on her lip was from Mommy, not Raya)

Raya was nice enough to share her birthday cupcake with Mommy. It's a step in the right direction. :)

Me & Ray-rays :)

Daddy & Raya, the girl who won't eat food but loves to chew on electronics

Well it's been one heck of a first year. Raya's first year of life has tested us in ways that we've never been tested before. This girl has probably had more doctor/therapy appointments in one year than I've had in my whole life. I've driven about 1,500 miles this past year just driving to appointments. She's spent a total of almost a whole month in the hospital and has undergone more tests than I can count (without getting out my notebooks, Raya: volumes 1, 2 and 3, that I write everything down in) and has spent a lot of her life not really feeling good. In spite of all of the craziness she's been through in her first year, she is one of the happiest babies I know and is such a sweet girl. There is a very big personality packed into that cute little body.
She loves to "sing" (more like yell) and "dance" (wiggle) to music. She waves and says bye-bye, which she learned during her 2 weeks at the hospital from all the people that were in & out of her room all day every day & said it to her. She loves Mommy but she LOVES Daddy and she LOOOOOOVES her big kids. She hugs a lot and if she's in the right mood, I can get her to give me a kiss (which is HUGE for a kid with as much of an oral aversion as she has). She's pretty headstrong and a lot of what we do with her has to be on her terms (or else Mommy has to sit on her to get it done, like change her dressing & hook/unhook her extension tubes or change her diaper :). When she's being poked & prodded at her appointments, she's not shy about letting the whole world know what she thinks about it but she's always very quick to forgive once it's over. She doesn't forget though. :)
I had hoped we'd be closer to a diagnosis & resolving her problems by her birthday than we are but I'm so grateful for the team of people that have gotten her to where she is and helped her to be the happy & healthy little girl that she is. Believe it or not, she's our biggest 1 year old. She's beating out Cole by over a pound and Kaida by about 5 pounds. :)
We are so grateful to have Raya in our family and for everything we have learned from her. And we're hoping that year 2 is less turbulent than year 1. :)
(and how fitting that this is the 100th post on Raya's blog :)

Tuesday, November 9, 2010

Clostridium difficile: the gift that keeps on giving

Need I say more? After she finished her treatment for c. diff, we had 3 days of normal diapers before the c. diff came back. Now we're 5 days into round 2 and back to changing her diaper on disposable pads with rubber gloves and scrubbing the living daylights out of our dry, cracked hands to keep anybody else from getting it.

Sunday, November 7, 2010

Sigh.

With my other 3 kids, I was really excited about their first birthdays. I planned ahead what kind of birthday cake I'd make them & how I'd decorate the cupcakes (our tradition for 1st birthdays). It wasn't the first time any of them had tasted cake & ice cream but it was the first time any of them had been given free reign with their very own cupcake. The first 2 kids devoured theirs.

#1 on her first birthday. They look a little bit related, don't they. :)

#2 on his 1st birthday.
They made a mess & had a ball. Kid #3 (who was also a refluxy baby that has never been good at gaining weight) wanted nothing to do with hers until her Auntie coaxed her into eating it.

Eventually she decided that the sweet, sticky frosting wasn't too bad. She didn't eat a crumb of the cake though.

Then there's #4. The one who doesn't like food. Not even chocolate. I tried to give her a little taste of it today and she gagged herself until she threw it up.


Maybe I should squirt her birthday cake into her mouth with a syringe :)

Her birthday will definitely be interesting. Don't get me wrong, I'm still very excited about her birthday, but it will be different than the other kids. There won't be any devouring of her first birthday cupcake, and you can bet your booties that nobody will be allowed to try and feed her any (to avoid aforementioned panic gagging/vomiting). I'll still make (or buy) her cupcakes for her first birthday though, and hopefully she'll at least play with hers. Sigh. This is the kind of stuff that's hard for me to swallow. She's pretty much normal in every way except when it comes to food/eating/digesting, etc. and the older she gets, the wider the gap gets between her and other kids her age. You don't realize how much you depend on food sometimes to pacify & entertain a kid until you have one that doesn't eat any. No cheerios to keep her happy in church, hence the amount of time I spend standing in the back of the room or the hallway. Really, I'm not complaining, just observing. Since it's only 3 days until her birthday (which I can't believe) and in light of how the past 3 weeks have been, I've been thinking a lot about what the next few months and years will bring. I wonder about things like Raya being able to walk with her 5 pound backpack on, how long we'll get to keep attaching a 2 oz bottle to her G tube to catch & measure all of the fluid that drains out of her stomach, if/when the vomiting will EVER stop, how old she'll be before kids start picking on her for being different, if we'll ever find a food that she wants to eat, etc. I don't dwell on those thoughts but they are there. We all want our children to be unique and special, but nobody wants their child to be "different".
Well, that got longer & more rambly than I wanted it too but it's just stuff that's been on my mind. I really can't believe that she'll be 1 year old this week. In some ways it seems like she's been here forEVER but in other ways, the year has just flown by in a blur of miscellaneous doctor & therapy appointments. :)

Saturday, November 6, 2010

Hospital 101: What I Wish I'd Known the First Time

I had some time on my hands while I was at the hospital, so I compiled a list of things I wish I had known on previous hospital stays. Some of it is probably specific to our hospital but most of it will probably apply to any hospital stay.


Hospital 101: What I Wish I’d Known the First Time
1.     Bring enough clothes to last you for twice as long as you think you’ll be there and leave the extras in the car just in case.
2.     Bring snacks that you like, both salty & sweet, and a couple of drinks (bottled water, juice, etc.). Goldfish crackers and grape juice are plentiful at the hospital but they get old fast and vending machine snacks add up quickly.
3.     If you must shower at the hospital, wear flip flops and ask for extra towels so you can put some down on the floor while you get dressed. Never know what’s living in the bathrooms. 
4.     Use hand sanitizer every time you walk into your child’s room, before you eat, before you touch your child, after you change his/her diapers, and especially after you touch any elevator buttons/doorknobs/light switches. It’s important to protect your child from germs and equally important to protect yourself. It’s also a good idea to scrub thoroughly with soap & water after you change poopy diapers, as some bacteria are able to withstand alcohol-based hand sanitizer (such as clostridium difficile, aka c. diff).
5.     Insist that EVERYONE who enters your child’s room (visitors, doctors, nurses, techs, hospital volunteers, etc.) scrub their hands or use hand sanitizer, especially if they will be touching your child. (not trying to be a germophobe, but it really is better to be safe than sorry)
6.     Where appropriate, get involved in helping with things that will become your responsibility to do when your child goes home. For us, that includes things like giving medications, GJ tube site care, and feeding routines. It’s important to feel comfortable caring for your child before you go home and nurses are great teachers.
7.     Be curious and ask questions. If you don’t know what a doctor or nurse is doing with your child and/or why, ask them. If they use words you don’t know, ask what they mean. Don’t worry about sounding dumb because the bottom line is that the more you understand about your child’s condition, the better you will be able to care for him or her.
8.     Take a small notepad so that you can write down questions as you think of them. That way you’ll remember everything you wanted to ask the next time you are able to talk to the doctor and you can write down their answers so you don’t forget.
9.     Personally, I like to write down pretty much everything that happens with Raya during her hospital stay. Nurses keep good records but they don’t share them with the parents.  I like to write down a timeline of the day & include what time Raya got medications, feeding schedule, vomiting, etc. Excessive, perhaps, but it’s so much easier to remember information & answer her doctors’ questions when I’ve written everything down. Especially in hospitals where sleep deprivation runs rampant and the days run together. 
10.   Take breaks and go outside. More than once I’ve gone out to get the aforementioned extra bag of clothes out of the car only to realize that it’s the first time I’ve been outside in 5 days. There’s nothing wrong with leaving your child’s room once in a while to get some fresh air & take a breather, especially if you’re feeling stressed.
11.   Don’t be afraid to speak up if you don’t like something that’s going on with your child. You are your child’s health care advocate and it’s your responsibility to watch out for them. If you see someone not washing their hands or wearing the required protective clothing, say something to them. If the nurse or tech you had one day really rubbed you the wrong way, discreetly ask the charge nurse to make sure you have a different one the next day. There’s nothing wrong with doing that.
12.   It might be a good idea to bring pajamas and comfortable clothes for your child. The hospital-issued pajama pants are more or less one-size-fits-lots so I like to at least have pants that I know will fit Raya. The shirts being too big isn't an issue but the pants being too big is a pain.
13.   YOU WILL BE BORED. I have learned that sometimes (lots of times) there’s nothing you can do but sit around and wait. There might be days (sometimes several) when all the doctor wants to do is monitor your child. Bring something to do. Some of the best time killers I’ve had are yarn & a crochet hook, my Nintendo DS, magazines, and a laptop.
14.   Don’t forget pajama pants or your cell phone charger.
15.   BRING A JACKET. Hospitals are freezing cold, especially near the operating room and testing areas (i.e. radiology, cath lab, endoscopy). Warm socks aren’t a bad idea either. 
16.   Bring a camera and use it, even if you don’t like the condition your child is in. What they go through (and consequently what YOU go through) as a child is an important part of their life story. Someday you can show them the pictures and say, “See what you put me through when you were little? You’d better behave yourself, Mr./Miss Teenager!”
17.   Hospital cafeteria food isn’t bad and it’s a lot cheaper & more convenient than going out.
18.  If your child has had surgery or has a need for pain medication, don’t be shy about asking for it. Sometimes nurses get busy and get behind on giving pain meds so if you notice that your child is in pain or that it’s time for another dose, call the nurse and ask for it.
19.   Bring your own shampoo, conditioner, lotion, toothpaste, toothbrush, & razor.
20.    If your hospital requires parents to wear an annoying plastic visitor badge like our hospital does, ask them if you have the option of having a much less obtrusive wristband.
I'm sure there's more that I've left off but this was what I thought of over the last week of our stay. I hope it helps somebody! :)

Thursday, November 4, 2010

How to entertain yourself at the hospital

How to entertain yourself at the hospital:
Play with your plastic puke pan

Make the "O" face so nurses will laugh & tell you you're cute

Take baths without leaving your crib
Play peek-a-boo with your hospital-issued pants that won't stay on
Play with your diaper. Not that one, the OTHER diaper. You know, the one draining your G tube?
Smash your nose against the plastic on the top rail of the cage crib
Stand on toys to make yourself taller and make them play music with your feet
Stare out the window at traffic flying by on the freeway (or in rush hour, stare at traffic standing still on the freeway)
Watch the sunrise since it's too bright in your room to sleep after sunrise :)
Hug your big sister when she comes to visit
Have a party at your crib at 3 am
Give everyone the puppy dog face to see if they'll let you go home
Be really excited to see Daddy so Mommy won't feel guilty about going home to take a shower
Dress up in your Halloween costume for 5 minutes when the big kids come to show you their costumes
Try to figure out how to crawl with an IV in your hand and a bottle hanging from your G tube


Yell. A lot. For no apparent reason.

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