Our butterball weighed in today at 10 POUNDS, 4.5 OUNCES!!! Double digits, FINALLY!!! :0) She's now 24" long, and her head size increased too. She's also been taken OFF her OXYGEN, and one of her diuretics!!! "This is by far the best I've ever seen her." (Dr. C.) Today has been the BEST day! Dietary wants us to slowly increase her feeds too!
Andi's cute face, just got 10x's cuter without that stupid oxygen cannula!
Tomorrow we have to go see a ENT Dr. to get the referral for the hearing aid. I was told that the hearing aid costs $4000. and my portion of that is $800. Not bad, considering, but still... OUCH!!! I'll have to walk out back and yank a few more bills off the ol' money tree. Yikes. The community nurse from the county health dept. is coming to see us tomorrow too. We're hoping she brings us news of help on the way... but, in the meantime, I have a name & number of a friend of a friend whom might entertain working for the Bean.
Andi's Dad said it earlier, ...'now we can go to the beach!'... so I think in a few weeks we'll be spending the weekend at the beach. YIPPIE! Just hope this string of good luck continues. Oddly enough, the social worker at the Dr's office I met with, in conjunction with her Dr., told me I had a cricket on my back. She flicked it off and I got to see she wasn't joking. I made the joke about bringing my pets with me wherever I go, and am just hoping that in some culture, having a cricket on you is a sign of good luck. We could use all the good luck we can muster, and will savior it with glee.
YIPPIE!!!
;0)
4th Birthday Photo Session
Monday, October 18, 2010
Friday, October 15, 2010
Simplifying The Complicated Life
Today I made great progress in my collection of places to call, although I sit here awaiting many call backs. So far, no real progress has been made in my quest for help. Next week, a social worker with Multnomah County Health Dept. is coming to meet Andi. She's one person that gave me about six numbers to call. It is my hope that her coming here will help me further in finding a solution for us. We're also seeing her pediatrician and the insurance company's social worker next week. The following week, Early Intervention is coming with about four specialists. Between that and a few people I hope to hear back from, something has got to work out for us. Hopefully soon we can get working on her hearing aid too. Getting kinda tired of playing the waiting game and want to move forward. It just seems that time is critical and sitting here doing nothing is not working for me. I want more, and I want it quicker.
One place I called is a caregiver agency and the mostly work with the elderly, but do work with kids. They aren't professional medically trained people, but 'take classes.' She said they run about $18-20. a hour, whereas, according to this lady, a nurse would cost $50-60. an hour. She gave me yet another number of a place to call to see if they could help with the cost. Therefore, we will keep digging. It must be said that all of this is INSANE!
While working, I've had the TV on in the background The movie Three Men and A Baby was on earlier. Now that I've experienced it myself, their first day with the baby and that whole first diaper scene cracked me up!!! Especially when the diaper fell off and the baby pees. Absolutely classic.
Tonight is family night. I'm making dinner, which is rather therapeutic to me. Especially since I like to take a weight-watchers recipe and make it fatty. Frankly, it's yummier that way! *silently laughing, knowing Lisa will laugh out loud, although visions of my former trainer shaking his head in disapproval frightens me!* We're going to watch a speck of TV and play Wii games... in addition to entertaining the Bean with books and her activity mat. Wow, how life has changed for us. But, I find myself looking forward to it with pride. Our lives are complicated and stressful, so a simple night at home as a family is the best gift we can award ourselves.
One place I called is a caregiver agency and the mostly work with the elderly, but do work with kids. They aren't professional medically trained people, but 'take classes.' She said they run about $18-20. a hour, whereas, according to this lady, a nurse would cost $50-60. an hour. She gave me yet another number of a place to call to see if they could help with the cost. Therefore, we will keep digging. It must be said that all of this is INSANE!
While working, I've had the TV on in the background The movie Three Men and A Baby was on earlier. Now that I've experienced it myself, their first day with the baby and that whole first diaper scene cracked me up!!! Especially when the diaper fell off and the baby pees. Absolutely classic.
Tonight is family night. I'm making dinner, which is rather therapeutic to me. Especially since I like to take a weight-watchers recipe and make it fatty. Frankly, it's yummier that way! *silently laughing, knowing Lisa will laugh out loud, although visions of my former trainer shaking his head in disapproval frightens me!* We're going to watch a speck of TV and play Wii games... in addition to entertaining the Bean with books and her activity mat. Wow, how life has changed for us. But, I find myself looking forward to it with pride. Our lives are complicated and stressful, so a simple night at home as a family is the best gift we can award ourselves.
Thursday, October 14, 2010
Growing A Butter Bean
This first picture was shot within her first week here. We were still at St. Vincent's - so it was within her first six days of life. We didn't know she had choanal atresia and needed surgery on her nose to open it from blockage. She was fed through an OG tube at that time and the scab under her nose was a burn from the oxygen tube.
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| Week 1 |
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| Almost 20 Weeks |
Wednesday, October 13, 2010
Phone Calls Galore
Wonder why I never call you? I hate the phone. Being in customer service since I was 16, I burnt out on the phone long ago. So, in between feeds, meds, diaper changes, calming, work, and critiquing Nate Burkus's outfit du jour, I am supposed to find time to call about eight different places to find out if they offer services that can help us. We're trying to get into the system. That's a major PITA.
The Bean is doing well. I didn't give her any gas med's today and she was a lot less fussy today, surprisingly. We also moved to twice a day doses of not only Ativan, but Methadone. By this time next week, we'll be off those two controlled substances. Today, we sat up on the couch (sitting in the crevasse), we had unproductive tummy time on the Boppy pillow, and we laid on the activity gym with the piano at her feet which she absolutely loved. She actually cooed, attempted to laugh, and stared at her fur-brother with amazement. My plan is to do this several times a day to build up her strength and stamina.
We have our work cut out for us. Hopefully all my phone calls will enable us to find help to give me a break, maybe give me a bit of a life outside of being nurse Mom. They keep throwing the words 'respite care' around and when I google that, I don't like what I read. I will try to figure out what will work best for us, for the Bean. It's going to take time to figure this out. It's going to be a chore, but well worth the effort, if it produces results.
The Bean is doing well. I didn't give her any gas med's today and she was a lot less fussy today, surprisingly. We also moved to twice a day doses of not only Ativan, but Methadone. By this time next week, we'll be off those two controlled substances. Today, we sat up on the couch (sitting in the crevasse), we had unproductive tummy time on the Boppy pillow, and we laid on the activity gym with the piano at her feet which she absolutely loved. She actually cooed, attempted to laugh, and stared at her fur-brother with amazement. My plan is to do this several times a day to build up her strength and stamina.
We have our work cut out for us. Hopefully all my phone calls will enable us to find help to give me a break, maybe give me a bit of a life outside of being nurse Mom. They keep throwing the words 'respite care' around and when I google that, I don't like what I read. I will try to figure out what will work best for us, for the Bean. It's going to take time to figure this out. It's going to be a chore, but well worth the effort, if it produces results.
Tuesday, October 12, 2010
A Few October Photos
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| Hanging With Ginga! |
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| I'm digging my new Peter Rabbit outfit from my great Uncle Pete & Nancy. It's still a bit big, but I dig it. |
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| Peter Rabbit booties |
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| WHAZZUP!! |
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Working On A System
I'm avoiding my work project for a moment... so I can update the blog. I actually googled 'bumbo seat' and think I have one that was passed-down to me, I just didn't know what it was. I will try that and tummy time as well -- later today after this feed digests, but before the next one. I have to take the mic-e (the g-tube's actual tube) out, and so she'll almost have a flat tummy that won't mess her g-tube up moreso, I hope. Thanks for the suggestions ladies!!! ;0)
This morning we dropped Maddux off at the daycare by my house. I worry about his elbows, as they have him playing fetch all day. His arthritis has been bothering him lately... time to step it up on his etodolac (anti-inflammatories). Yes, the dog has med's too, yea! Hopefully he's having lots of fun! It's sunny out, so Andi and I are going to walk down there after 5 and go "pick him up". Should be interesting.
This morning, we also had to run to the Kaiser pharmacy again because two of Andi's med's were needing to be filled. I figured out a new method, throwing the smallest O2 tank in a small sports backpack, and straping her in her front-loaded carrier... threw the purse over a shoulder, and we took off... it worked out pretty well for the short trip. Then I had to throw her back in the truck, well, not throw her, but delicately place her in her carseat...hahhaa... and then since we were out, we decided to hit up the grocery store for one small bag's worth of goods. Again, I strapped the O2 tank on my back. Strapped the Bean to the front. Threw my super cute, but not very handy purse somewhat over my shoulder, and luckily had the forethought to grab a canvas bag to pack the groceries in, as our local store is only doing paper bags and they have no handles. Talk about having your hands full... I would have to use a cart and ewh, I hate using the cart.
So, we did it. We raced back home and got the bean's lunch going about a 1/2 hour late, and now that she has some food going into the belly, she's not so displeased with me. Apparently, the Bean doesn't like to wait... hmmm... wonder where she got that from?! HA! These little trips will hopefully give me more confidence to do bigger trips, like tackling Costco. Well, that might be a bit too ambitious, but least I know we can handle the pharmacy and the grocery store for a short period out.
Breaktime is over... must get back to the work project, especially now that the Bean is on her way back into another snorefest. One thing she wouldn't let me enjoy early this morning. *insert pouty face here.* Maybe I should start going to bed at 7 p.m., so when she's ready to get up at 4, I can at least pry my eyes open. Soon, we will be done with 2/3 of the midnight medicines. Maybe then we can reconfigure the med schedule so I can snore for a few more hours disruption free. Okay, less dreaming, more workie-work. Yikes, I think I require more coffee first.
This morning we dropped Maddux off at the daycare by my house. I worry about his elbows, as they have him playing fetch all day. His arthritis has been bothering him lately... time to step it up on his etodolac (anti-inflammatories). Yes, the dog has med's too, yea! Hopefully he's having lots of fun! It's sunny out, so Andi and I are going to walk down there after 5 and go "pick him up". Should be interesting.
This morning, we also had to run to the Kaiser pharmacy again because two of Andi's med's were needing to be filled. I figured out a new method, throwing the smallest O2 tank in a small sports backpack, and straping her in her front-loaded carrier... threw the purse over a shoulder, and we took off... it worked out pretty well for the short trip. Then I had to throw her back in the truck, well, not throw her, but delicately place her in her carseat...hahhaa... and then since we were out, we decided to hit up the grocery store for one small bag's worth of goods. Again, I strapped the O2 tank on my back. Strapped the Bean to the front. Threw my super cute, but not very handy purse somewhat over my shoulder, and luckily had the forethought to grab a canvas bag to pack the groceries in, as our local store is only doing paper bags and they have no handles. Talk about having your hands full... I would have to use a cart and ewh, I hate using the cart.
So, we did it. We raced back home and got the bean's lunch going about a 1/2 hour late, and now that she has some food going into the belly, she's not so displeased with me. Apparently, the Bean doesn't like to wait... hmmm... wonder where she got that from?! HA! These little trips will hopefully give me more confidence to do bigger trips, like tackling Costco. Well, that might be a bit too ambitious, but least I know we can handle the pharmacy and the grocery store for a short period out.
Breaktime is over... must get back to the work project, especially now that the Bean is on her way back into another snorefest. One thing she wouldn't let me enjoy early this morning. *insert pouty face here.* Maybe I should start going to bed at 7 p.m., so when she's ready to get up at 4, I can at least pry my eyes open. Soon, we will be done with 2/3 of the midnight medicines. Maybe then we can reconfigure the med schedule so I can snore for a few more hours disruption free. Okay, less dreaming, more workie-work. Yikes, I think I require more coffee first.
Monday, October 11, 2010
lil' reminders
There are little reminders all around us to help us remember that our Bean is on her own path, taking the long way to get there, the scenic route. Today, I went to put her in one of those standing activity gyms, as I was thinking, 'okay, she's over four months' (the age requirement on the box), and I really want to get her working on her balance, since we know she will have balance issues. I put it on the shortest notch and still, our lil' Bean's feet are no where near the floor. She's not yet big enough for that play-gym. She's also not yet strong enough to hold herself up. She's almost five months old, but because of all the things she's been through, it will take her longer to get there. Honestly, this reminder depresses the hell out of me. It's a glaring siren that not all is okay just yet, and we still have a long hard road ahead of us. Next week we have a bunch of specialists coming to meet the Bean, to evaluate what services or therapies she will require, so we can get moving forward with making that happen. I spoke with a hearing specialist today and we touched base about getting the whole hearing aid process started. If it wasn't such a task, I'd throw the Bean in the truck and take our paperwork down to the post-office. It's just easier to wait until her Dad gets home and then run the mail over to the post-office while he watches her. Almost sounds lazy of me, but, for anyone who has had to haul a carseat and a diaper bag for a trip a mere mile away... it ain't really worth all that. Throw in a good ol' O2 tank too... uh, no thanks... I'll wait. We were out and about most of yesterday and the Bean did not sleep much yesterday. Today, she's been sleeping most of the day. I'm sure I will be so thankful of that at 3 a.m., when she decides it's time to get up and get going on her mirror gazing and "pacie" obsession.
Tonight I really need to bring myself to get started organizing her medical binder. The hospital or the March Of Dimes, provided us with a binder that we just 'fill-in' the information so that at a moments notice, anyone, any Dr. can pick up the binder and read about the Bean and all the fun she's been having. I used to be a neat-freak... and this is one organizational ordeal I can't seem to get jump-started on... maybe it's a bit too overwhelming being there's nearly five months of hospital discharge summaries, copies of Dr's visits, lab results, and my personal favorite, medicial statments that aren't really bills, but a big ol', "look at what we're charging your insurance for your last stay with us." Yikes-o-rama!!
The Bean has awoken and wants to be held. She's on the verge of falling back to sleep, reclining on Mom's arm, while I resort to one-handed typing! Ooh, big bright blue eyes gaze up at me, nap-time is apparently over! I sit her upright on my lap and she watches me type, her hiccups almost keeping beat with the Bing Crosby song playing on the computer. There are lil' reminders of what she's not yet ready for, but yet, so many other things we can do to get her there. It's just a matter of keeping focused, being creative, and working toward making our lil' Bean a big ol' butterball of health & happiness.
Tonight I really need to bring myself to get started organizing her medical binder. The hospital or the March Of Dimes, provided us with a binder that we just 'fill-in' the information so that at a moments notice, anyone, any Dr. can pick up the binder and read about the Bean and all the fun she's been having. I used to be a neat-freak... and this is one organizational ordeal I can't seem to get jump-started on... maybe it's a bit too overwhelming being there's nearly five months of hospital discharge summaries, copies of Dr's visits, lab results, and my personal favorite, medicial statments that aren't really bills, but a big ol', "look at what we're charging your insurance for your last stay with us." Yikes-o-rama!!
The Bean has awoken and wants to be held. She's on the verge of falling back to sleep, reclining on Mom's arm, while I resort to one-handed typing! Ooh, big bright blue eyes gaze up at me, nap-time is apparently over! I sit her upright on my lap and she watches me type, her hiccups almost keeping beat with the Bing Crosby song playing on the computer. There are lil' reminders of what she's not yet ready for, but yet, so many other things we can do to get her there. It's just a matter of keeping focused, being creative, and working toward making our lil' Bean a big ol' butterball of health & happiness.
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