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Showing posts from November, 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…

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 …

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 …

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.

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'…

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. :)

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.





How far we've come...

Where we started:


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 & the…

Happy Birthday Raya!


 








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 …

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.

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.


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.


Her birthday will definitely be interesting. Don't get me wrong, I'm still very excited …

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…

How to entertain yourself at the hospital

How to entertain yourself at the hospital: