Last January I took my dad to his regular nephrology appointment. For those of you who don't know, nephrologists are kidney specialists. Dad had developed kidney failure after about 15 years of congestive heart failure (CHF). This is a common effect of CHF, and is generally associated with end stage CHF. The nephrologist that he saw had been managing his kidney failure fairly well for about two years with different diuretics (water pills) and heart failure medications. I'll try not to overwhelm you with the science of how those work. But last January when I took Dad there, like the previous six appointments, the doctor would ask him how things were going. He only complained about his legs being broken out and his lack of energy. The doctor and I both knew that his legs would not heal because of his uncontrolled diabetes, and his energy was from the obvious build up of fluid resulting from both the kidney failure and the heart failure (his heart's inability to push oxygenated blood efficiently around his body). Since there was medically little that she could do for him at this end stage, she recommended that he see a palliative care specialist.
I had been around medicine enough to understand that what palliative care meant, but I understood that to occur when hospitalized patients were on the very verge of death. It didn't make much sense to me to have Dad see this doctor. I decided to call the clinic and ask what they could do for Dad. I spoke with a wonderful woman who name was Mary Jane. She explained to me how hospice worked, and very specific examples of what sort of things they might be able to help with. The nephrologist had told Dad that it would help his spiritual needs. While I understood what that meant, Dad thought it meant that they would have "preachers" (pastors/priests) come to his house to pray. So after I talked to the clinic, I called Mom and asked her to call there so that Mary Jane could explain it to her too.
Mom did call, and we set up an appointment for him to meet the doctor. As it worked out, Mom wasn't able to be there. So I took him to the appointment. The nurses there all told me that Dad looked very very sick. They even got him a wheel chair after I went to get the car, I guess he looked faint. I thought this was interesting because I think my family and I had all gotten so used to how Dad looked, that we didn't pay any attention at all. Dr Swanson was great. He wrote down verbatum what he was saying so that my mom would be able to read it later. He talked slowly and tried to explain everything clearly and in laymen's terms. I am not sure how much Dad understood, but I felt very comfortable with Dad in his hands.
Over the next several days, a hospice nurse, coordinator, CNA, and pastoral care person all met Dad (and Mom) at their home. They evaluated what was needed to keep Dad home and comfortable. They arranged a schedule to bath him, check his bandages, talked with him about his blood sugar, brought in a commode, oxygen, and a pain med pack for when it might be needed. It certainly took some of the burden off Mom.
In March Dad's blood sugars where as unstable as ever, and one day his CNA found him laying on the bathroom floor. He was transported to a hospice house, where I think they expected his days would be numbered. This hospice house was a nursing facility that cared for only ten critically ill hospice patients. It was very nice, and the rooms were like private hospital suites. There Dad's blood sugars where stablilized, and it was decided that he would go home on a less stringent sliding scale. This was to keep him from dropping so low again. The nurse there also taught everyone in my family to give insulin. Dispite the fact that Dad had been an insulin dependent diabetic for years, I was the only family member that knew how to give it.
Dad went home after nine days there. He was better, but scared from what had happend. He never walked as well as he had before that, and he needed to be catheterized soon after. It was sort of the beginning of the end. My Mom, my siblings, my husband and I all took turns making sure that Dad got his insulin properly, and things were ok for a few weeks. On Easter, however, Dad began to fall, and my Mom could not get him up. After several falls that day, it was decided that he should be transported back to the hospice house. Later, a social worker met with all of us, and it was decided that Dad required more intensive care than they thought we could provide at home.
I thought this was very strange since it was their job to help him stay at home. It seemed to me that they offered no additional services that would keep him at home. So Dad's power of attorney was activated, and Mom arranged for him to go to a nursing home. He spent exactly one night in that facility. It was absolutely awful! His room was smaller than the closet that I had as a kid, they put a gym mat on the floor for him in case he fell, which he did. At four in the morning they called my Mom asking what they should do since he was unresponsive. She had to ask them what his blood sugar level was. I was livid. That day I arranged for Dad to be transported back to the hospice house and I had his care transfered to another hospice provider. They arranged for a hospital bed to come to my home, and coordinated around the clock care for the first 24 hours.
Dad stayed with us for just about a week. There where two times that he fell, and we had trouble getting him up. His pain was managed as best we could, and he saw his grand babies every single day. We got up each morning dressed, got the babies up and dressed, got Dad up and dressed, fed the babies and Dad, laid Dad back down, laid the babies down, got Dad up a few hours later to sit in his chair, got the babies up, fed them all again, laid them all down again... I am not sure how we got ourselves fed. We watched as a the man that I have always known to be hungry and vivacious, refused medicine, then food, then liquids. We held his hand as he struggled to breath, but refused to take the oxygen that was here waiting for him. I held his hand as he struggled through his final breaths in his final moments.
I don't think that the sacrifices that we made for him in that last week were in anyway great. I often think that we should have taken him sooner. I miss him every day, and the smallest things remind me of all we lost. But I know that his last week was one of his proudest. He loved seeing the babies, and without hospice, he would have rotted away in that awful nursing home alone and forgotten. I think hospice gave me the ability to give Dad the greatest gift I could have on his death bed.
Thank you Heartland Hospice especially Mike RN and Mike CNA for the wonderful care you gave Dad!
Us
Wife, Parent, Nurse; my life raw and real, as I see it.
Sunday, November 25, 2007
Thursday, November 22, 2007
You guessed it...
Happy Thanksgiving!
There are so many things to be thankful for....
10 things I am thankful for this year, not necessarily in this order:
1. Dishwashers so I don't have to clean all these dishes!
2. Walgreen's home health 24 hour on call staff
3. that the sad dying CareBear has an OFF switch!
4. 10 and 1 (GO PACK!!!)
5. that two years and two days ago, things didn't go any worse!
6. Livi can walk and Taylor can talk and both are super healthy
7. my mother and mother-in-law get along so that we could all be here today
8. the March of dimes, Ronald McDonald House charities, Children's Hospitals, and WAMH and St E's NICUs.
9. My ever patient and loving husband.
10. Heartland Hospice
Hope everyone is having a wonderful turkey day!
There are so many things to be thankful for....
10 things I am thankful for this year, not necessarily in this order:
1. Dishwashers so I don't have to clean all these dishes!
2. Walgreen's home health 24 hour on call staff
3. that the sad dying CareBear has an OFF switch!
4. 10 and 1 (GO PACK!!!)
5. that two years and two days ago, things didn't go any worse!
6. Livi can walk and Taylor can talk and both are super healthy
7. my mother and mother-in-law get along so that we could all be here today
8. the March of dimes, Ronald McDonald House charities, Children's Hospitals, and WAMH and St E's NICUs.
9. My ever patient and loving husband.
10. Heartland Hospice
Hope everyone is having a wonderful turkey day!
Wednesday, November 21, 2007
Homecare and Hospice Month
I learned the other night that November, Prematurity Awareness Month, is also Home Care and Hospice Month. For this post, I will address Home Care...
As a result of T and A's prematurity, I have become acquainted with the virtually underground world that is Home Health care. When Taylor left the NICU here in Appleton, the neonatologist instructed the social worker to help us find Home Health Care, as Taylor's needs were great. Unfortunately, its my belief that she herself really didn't understand what this meant, and therefore she was little help to us. I personally didn't really understand it either, I thought I thought the doctor was talking about having a nurse come to our home daily for an assessment:ie listen to heart, lungs, check weight. It wasn't until we met with Julie, a discharge planner at University of Wisconsin Children's Hospital, that I really began to appreciate the difference between home health care and visiting nurses.
Julie put us in contact with a newer agency located in New Holstein who she thought might be able to help us find a Home Health nurse. This person would spend a number of hours at our home, and would be responsible for any hands on care required for Taylor. This person could be a professional with knowledge about all of his medical issues, and could be with him if we could not be. They would also be trained to give and evaluate any side effects of the multitudes of medications that Taylor came home on. He/she would monitor Taylor's lung disease, oxygen use, tube feedings and stoma, as well as any other medical concerns that might arise.
After contacting the agency, a nurse, Linda, came to my home. She did a basic nursing assessment of Taylor, and informed us that we qualified for a nurse to be in our home for up to 8 hours each day. Generally, how long and how often we wanted care, was up to us as long as it was within the limits approved by Medicaid.
Linda and some of the other nursing professionals supported us for nearly six months through some of Taylor (and Alivya's) most terrifying illnesses since discharge. They helped us learn to cope with copious amounts of medical equipment needed to care for Taylor, and offered alternative suggestions when problems arose. Today, Taylor's care requirements have decreased, and nurses come only for a short visit every two months. We still have home health care, however. Now we have two caretakers who rotate 7 hour shifts five days per week. Their responsibilities are similar to those of the nurses we initially required, but deal less with the medical issues and more with the physical delays that we are dealing with. They support all of Taylor's therapists by performing the exercises therapists recommend for him. They also help Taylor with bathing, dressing, diapering, and walking. This all in turn helps me, since if I had to do all this myself, I would never set my hands on Alivya.
These two ladies, and their mom (Linda) have opened our eyes to a world of need. The realm of home health care extends far beyond Taylor and Alivya, far beyond ailing victims of old age. It encompasses people of all ages from infancy to elderly, as wells as patients with all sorts of illness. Some will get better, some get progressively worse, some will stay relatively the same until they die. The people that take care of these patients give them the gift of freedom while accepting little for themselves. They live with sometimes lousy salaries, and put up with ornery clients, and understand that sometimes "Thank you" just isn't going to come. And yet, babies who were expected to die, come home... young adults with degenerative diseases contribute to society... very ill men die with dignity... and lost soles are not really lost, just mistaken.
So I would like to take this moment to extend a very sincere, and overdue, THANK YOU, to the many Home Health Professionals that have helped us keep T and A healthy, and especially to Linda, Tanya, and Terra. I can't really tell this family what their sacrifices have meant to their loved one, but I can say that it surely has not gone unnoticed.
As a result of T and A's prematurity, I have become acquainted with the virtually underground world that is Home Health care. When Taylor left the NICU here in Appleton, the neonatologist instructed the social worker to help us find Home Health Care, as Taylor's needs were great. Unfortunately, its my belief that she herself really didn't understand what this meant, and therefore she was little help to us. I personally didn't really understand it either, I thought I thought the doctor was talking about having a nurse come to our home daily for an assessment:ie listen to heart, lungs, check weight. It wasn't until we met with Julie, a discharge planner at University of Wisconsin Children's Hospital, that I really began to appreciate the difference between home health care and visiting nurses.
Julie put us in contact with a newer agency located in New Holstein who she thought might be able to help us find a Home Health nurse. This person would spend a number of hours at our home, and would be responsible for any hands on care required for Taylor. This person could be a professional with knowledge about all of his medical issues, and could be with him if we could not be. They would also be trained to give and evaluate any side effects of the multitudes of medications that Taylor came home on. He/she would monitor Taylor's lung disease, oxygen use, tube feedings and stoma, as well as any other medical concerns that might arise.
After contacting the agency, a nurse, Linda, came to my home. She did a basic nursing assessment of Taylor, and informed us that we qualified for a nurse to be in our home for up to 8 hours each day. Generally, how long and how often we wanted care, was up to us as long as it was within the limits approved by Medicaid.
Linda and some of the other nursing professionals supported us for nearly six months through some of Taylor (and Alivya's) most terrifying illnesses since discharge. They helped us learn to cope with copious amounts of medical equipment needed to care for Taylor, and offered alternative suggestions when problems arose. Today, Taylor's care requirements have decreased, and nurses come only for a short visit every two months. We still have home health care, however. Now we have two caretakers who rotate 7 hour shifts five days per week. Their responsibilities are similar to those of the nurses we initially required, but deal less with the medical issues and more with the physical delays that we are dealing with. They support all of Taylor's therapists by performing the exercises therapists recommend for him. They also help Taylor with bathing, dressing, diapering, and walking. This all in turn helps me, since if I had to do all this myself, I would never set my hands on Alivya.
These two ladies, and their mom (Linda) have opened our eyes to a world of need. The realm of home health care extends far beyond Taylor and Alivya, far beyond ailing victims of old age. It encompasses people of all ages from infancy to elderly, as wells as patients with all sorts of illness. Some will get better, some get progressively worse, some will stay relatively the same until they die. The people that take care of these patients give them the gift of freedom while accepting little for themselves. They live with sometimes lousy salaries, and put up with ornery clients, and understand that sometimes "Thank you" just isn't going to come. And yet, babies who were expected to die, come home... young adults with degenerative diseases contribute to society... very ill men die with dignity... and lost soles are not really lost, just mistaken.
So I would like to take this moment to extend a very sincere, and overdue, THANK YOU, to the many Home Health Professionals that have helped us keep T and A healthy, and especially to Linda, Tanya, and Terra. I can't really tell this family what their sacrifices have meant to their loved one, but I can say that it surely has not gone unnoticed.
Sunday, November 18, 2007
Pix, As Promised
Light a Little Star
Halloween
Neither of them were interested in wearing their Bam Bam and Pebbles hair :( They were still cute little cave babies!
Halloween
Neither of them were interested in wearing their Bam Bam and Pebbles hair :( They were still cute little cave babies!
Saturday, November 17, 2007
MEME
So I've been tagged again... This is short and sweet, so we'll go there...
What you do:
Share 7 random and/or weird facts about yourself.
Tag 7 random people at the end of your post, and include links to their blogs.
Let each person know that they’ve been tagged by leaving a comment on their blog.
1. I use my front door as a public bulletin board about "what's on Julie's mind".
2. A lot of things bug me... especially when people are sitting on or near the same piece of furniture and bounce their knees.
3. I am actually really shy, but in Kindergarten all the kids got head lice, and the two other girls in my class made me carry their books back to school when they got better. I decided that even though I am shy, no one will walk over me again.
4. I script most of my phone conversations before I make a call- I LOATH sounding stupid.
5. I like to sketch and paint things, especially babies and cartoon figures... some people think I am pretty good at it.
6. I can't spell to save my sole!
7. I love "Back to school" shopping, even though my kids are only almost two (and I have for years!)
And now I tag:
Anybody (cheap, I know :(
What you do:
Share 7 random and/or weird facts about yourself.
Tag 7 random people at the end of your post, and include links to their blogs.
Let each person know that they’ve been tagged by leaving a comment on their blog.
1. I use my front door as a public bulletin board about "what's on Julie's mind".
2. A lot of things bug me... especially when people are sitting on or near the same piece of furniture and bounce their knees.
3. I am actually really shy, but in Kindergarten all the kids got head lice, and the two other girls in my class made me carry their books back to school when they got better. I decided that even though I am shy, no one will walk over me again.
4. I script most of my phone conversations before I make a call- I LOATH sounding stupid.
5. I like to sketch and paint things, especially babies and cartoon figures... some people think I am pretty good at it.
6. I can't spell to save my sole!
7. I love "Back to school" shopping, even though my kids are only almost two (and I have for years!)
And now I tag:
Anybody (cheap, I know :(
Friday, November 16, 2007
Sick Calls
Thanks to one of my beloved readers... you know who you are... I had the distinct opportunity to donate four precious hours of sleep to my employer, their clients, and my deepest darkest thoughts about whatever would keep me awake until 3:00 am. Its about 1:30 now, I've done a new baby and one patient. The rest of my time... thinking. So dangerous. This is where I brew up ideas like, decorate my front door in Preemie info, and join the committee to plan Walk America 08, and buy the children Pizza Delivery Elmo for Christmas. Oh and while I am thinking about it... no grammar/is this really English checks allowed for this post. I have been up since 7 am YESTERDAY, and I have been at work since 3pm... oh and I had three therapists and two kids getting not one but two shots... its been a LOOOOOONGGGG day! I deserve to make grammar errors!
Ok, enough of that. I don't really have a literal purpose to this post... just passing time really. One more patient... does that make this a busy one? 1:41am Its going to be a long two hours and twenty minutes!
Good Night
Oh, and Happy Birthday TOM!!!
Ok, enough of that. I don't really have a literal purpose to this post... just passing time really. One more patient... does that make this a busy one? 1:41am Its going to be a long two hours and twenty minutes!
Good Night
Oh, and Happy Birthday TOM!!!
Wednesday, November 14, 2007
Prematurity Awareness Month
I figure, that I am about two weeks behind in my life. So to me, it is fitting to talk about the fact that November is Prematurity Awareness Month now... on November 14th ;) Yesterday I pulled out some ribbon and made little purple and pink ribbons, which I will wear every day until the end of the month. I also pursuaded at least six of my closest victims to entertain the idea as well... well at least they took my little ribbons to humor me. Additionally, I have decorated my front door, in fine Julie tradition, with facts about prematurity as it relates to Wisconsin. Did you know that since 1994, the number of preterm infants born in Wisconsin has jumped by 10%?
This is a really BIG problem since in 2005 the national lost economic product related to preterm birth is equivalent to $26.2 BILLION!!!! Not to mention all the stuff these kids and their families go through. Just this afternoon Taylor was happily playing near the TV, when he lost his balance and fell. He hit his head on the TV, began screaming and promptly threw up everything that we had just pumped into his little belly. Not a normal reaction to a little fall.
I read a poem over on Ashton's blog (see the link to my left of this page), and it reminded me that this life we live is NOT at all normal. Even though it is very normal to us, to the world we live in true chaos! We do make decisions about what we are going to do based upon what sort of audience we might face in light of one of Taylor's infamous vomiting episodes. When accidents happen at other people's homes, we feel really bad. And we re think the idea of going places as a result. We sigh when we have to explain the pump, and the button, and T's big wide flat head. It breaks my heart to hold him down for his puffs (which we are doing around the clock at the moment, since they both have nasty colds) Mostly, I hate explaining to well meaning old ladies that my son will vomit their cute little orange fishy crackers, so please don't give them to him.
My point is, that Livi and Tay were supposed to have April birthdays, but have December birthdays instead. They spent a total of 260 days combined in various NICUs, combined they weighed less than 4 pounds, and although they have come lightyears from where they started, their prematurity continues to effect every single decision we make in our lives.
No baby, no family, should have to suffer life long consequences created by prematurity. The March of Dimes is working very hard to curve this trend, which seems to be growing in spite of our efforts. I know that I have begged for your generosity, so I am not going there again. But I can't help but wonder, in light of Taylor and Alivya's fight, why so few are willing to donate a few hours of time to walk with us in April? Why so few want to wear a little purple ribbon to let other people know about this world, where therapists go to homes five days a week to teach kids to taste food?
I have become more involved in the March of Dimes than I ever expected to, but everything that I do, seems so insignificant in the context of the accomplishments of Alivya and Taylor. Please think of them and support them in what ever way you choose, especially during the month of November! (Ironically the same month that everything in our lives went array...)
November 20th, 2005
This is a really BIG problem since in 2005 the national lost economic product related to preterm birth is equivalent to $26.2 BILLION!!!! Not to mention all the stuff these kids and their families go through. Just this afternoon Taylor was happily playing near the TV, when he lost his balance and fell. He hit his head on the TV, began screaming and promptly threw up everything that we had just pumped into his little belly. Not a normal reaction to a little fall.
I read a poem over on Ashton's blog (see the link to my left of this page), and it reminded me that this life we live is NOT at all normal. Even though it is very normal to us, to the world we live in true chaos! We do make decisions about what we are going to do based upon what sort of audience we might face in light of one of Taylor's infamous vomiting episodes. When accidents happen at other people's homes, we feel really bad. And we re think the idea of going places as a result. We sigh when we have to explain the pump, and the button, and T's big wide flat head. It breaks my heart to hold him down for his puffs (which we are doing around the clock at the moment, since they both have nasty colds) Mostly, I hate explaining to well meaning old ladies that my son will vomit their cute little orange fishy crackers, so please don't give them to him.
My point is, that Livi and Tay were supposed to have April birthdays, but have December birthdays instead. They spent a total of 260 days combined in various NICUs, combined they weighed less than 4 pounds, and although they have come lightyears from where they started, their prematurity continues to effect every single decision we make in our lives.
No baby, no family, should have to suffer life long consequences created by prematurity. The March of Dimes is working very hard to curve this trend, which seems to be growing in spite of our efforts. I know that I have begged for your generosity, so I am not going there again. But I can't help but wonder, in light of Taylor and Alivya's fight, why so few are willing to donate a few hours of time to walk with us in April? Why so few want to wear a little purple ribbon to let other people know about this world, where therapists go to homes five days a week to teach kids to taste food?
I have become more involved in the March of Dimes than I ever expected to, but everything that I do, seems so insignificant in the context of the accomplishments of Alivya and Taylor. Please think of them and support them in what ever way you choose, especially during the month of November! (Ironically the same month that everything in our lives went array...)
November 20th, 2005
Monday, November 05, 2007
Unusal
We had a super good time at the March of Dimes benefit on Saturday. I have lots of pictures to post, but Jon updated my IPhoto, and now I don't know how to upload them... so it'll have to wait until he shows me how...
Now for the unusual part... I have never done one of these meme things, but I have also never been tagged before... so since I have been tagged, what the **ll...
1. What kind of SOAP is in your bathtub right now? Equate (Walmart brand) with shea butter, the stuff smells like regurgitated pedia sure... can't wait for that to be gone!
2. Do you have any watermelon in your refrigerator? No
3. What would you change about your living room? Nothing, we just made it over during the summer!
4. Are the dishes in your dishwasher clean or dirty? dirty
5. What is in your fridge? Food, lots of whole milk!
6. White or wheat bread? Whole grain white, I love SaraLee!
7. What is on top of your refrigerator? Empty baskets
8. What color or design is on your shower curtain? We have doors, but the kids have blue swirls!
9. How many plants are in your home? 0 between me and Oliver, they don't live!
10. Is your bed made right now? Nope
11. Comet or Soft Scrub? Both
12. Is your closet organized? Mine is, don't ask about Jon's!
13. Can you describe your flashlight? I think we have one on a key chain somewhere
14. Do you drink out of glass or plastic most of the time at home? Cheap Glass
15. Do you have iced tea made in a pitcher right now? No, eew
16. If you have a garage, is it cluttered? Actually, NO, we organized over the summer!!! hurray!
17. Curtains or blinds? Blinds, curtains just suck up cat hair!
18. How many pillows do you sleep with? 2, 1 body, 1 king
19. Do you sleep with any lights on at night? pitch black
20. How often do you vacuum? Every day, in my mind anyway
21. Standard toothbrush or electric? Standard
22. What color is your toothbrush? Navy blue
23. Do you have a welcome mat on your front porch? yes but it doesn't say welcome, just green
24. What is in your oven right now? racks
25. Is there anything under your bed? Dust bunnies and my wedding dress (carefully preserved!)
26. Chore you hate doing the most? All of them
27. What retro items are in your home? Besides Taylor's clothes?
28. Do you have a separate room that you use as an office? Yes, two
29. How many mirrors are in your home? 3
30. Do you have any hidden emergency money around your home? I wish! I do keep a dollar stashed for work, I have a popcorn addiction!
31. What color are your walls? The ones I like or the ones that came with the house?
32. Do you keep any kind of protection weapons in your home? No!
33. What does your home smell like right now? Air
34. Favorite candle scent? Not a fan of scented stuff... allergies
35. What kind of pickles (if any) are in your refrigerator right now? None, but I would love some homemade dills!
36. What color is your favorite Bible? I don't have one either
37. Ever been on your roof? Not on your life!
38. Do you own a stereo? I guess so, I would call them Jon's
39. How many TVs do you have? 3
40. How many house phones? 0
41. Do you have a housekeeper? Only if the girls count! Thanks for all the work you do Tanya!
42. What style do you decorate in? Me... :)
43. Do you like solid colors in furniture or prints? Solids!
44. Is there a smoke detector in your home? You bet!
45. In case of fire, what are the items in your house which you’d grab if you only could make one quick trip? I would be in big trouble, ... actually I would probably die trying to get everything out... such a sentimental sucker!
So there you have it...
Now for the unusual part... I have never done one of these meme things, but I have also never been tagged before... so since I have been tagged, what the **ll...
1. What kind of SOAP is in your bathtub right now? Equate (Walmart brand) with shea butter, the stuff smells like regurgitated pedia sure... can't wait for that to be gone!
2. Do you have any watermelon in your refrigerator? No
3. What would you change about your living room? Nothing, we just made it over during the summer!
4. Are the dishes in your dishwasher clean or dirty? dirty
5. What is in your fridge? Food, lots of whole milk!
6. White or wheat bread? Whole grain white, I love SaraLee!
7. What is on top of your refrigerator? Empty baskets
8. What color or design is on your shower curtain? We have doors, but the kids have blue swirls!
9. How many plants are in your home? 0 between me and Oliver, they don't live!
10. Is your bed made right now? Nope
11. Comet or Soft Scrub? Both
12. Is your closet organized? Mine is, don't ask about Jon's!
13. Can you describe your flashlight? I think we have one on a key chain somewhere
14. Do you drink out of glass or plastic most of the time at home? Cheap Glass
15. Do you have iced tea made in a pitcher right now? No, eew
16. If you have a garage, is it cluttered? Actually, NO, we organized over the summer!!! hurray!
17. Curtains or blinds? Blinds, curtains just suck up cat hair!
18. How many pillows do you sleep with? 2, 1 body, 1 king
19. Do you sleep with any lights on at night? pitch black
20. How often do you vacuum? Every day, in my mind anyway
21. Standard toothbrush or electric? Standard
22. What color is your toothbrush? Navy blue
23. Do you have a welcome mat on your front porch? yes but it doesn't say welcome, just green
24. What is in your oven right now? racks
25. Is there anything under your bed? Dust bunnies and my wedding dress (carefully preserved!)
26. Chore you hate doing the most? All of them
27. What retro items are in your home? Besides Taylor's clothes?
28. Do you have a separate room that you use as an office? Yes, two
29. How many mirrors are in your home? 3
30. Do you have any hidden emergency money around your home? I wish! I do keep a dollar stashed for work, I have a popcorn addiction!
31. What color are your walls? The ones I like or the ones that came with the house?
32. Do you keep any kind of protection weapons in your home? No!
33. What does your home smell like right now? Air
34. Favorite candle scent? Not a fan of scented stuff... allergies
35. What kind of pickles (if any) are in your refrigerator right now? None, but I would love some homemade dills!
36. What color is your favorite Bible? I don't have one either
37. Ever been on your roof? Not on your life!
38. Do you own a stereo? I guess so, I would call them Jon's
39. How many TVs do you have? 3
40. How many house phones? 0
41. Do you have a housekeeper? Only if the girls count! Thanks for all the work you do Tanya!
42. What style do you decorate in? Me... :)
43. Do you like solid colors in furniture or prints? Solids!
44. Is there a smoke detector in your home? You bet!
45. In case of fire, what are the items in your house which you’d grab if you only could make one quick trip? I would be in big trouble, ... actually I would probably die trying to get everything out... such a sentimental sucker!
So there you have it...
Friday, November 02, 2007
Lite a little Star
Saturday night Jon, the kids, and Tanya will be joining me at a March of Dimes event called "Lite a Little Star". During this event, little glowing stars can be purchased for $10. At 6 or 6:30 there will be a little parade of lit stars, followed by area families telling their stories. I have been asked to tell Alivya and Taylor's story. I am very excited. I have always said that their struggle was not, for naught. They are my angels, my tiny miracles, and I will shout it from roof tops, if needed, to remind the world of their strong will. No baby should have to suffer the way they did, no family should have to sit by helplessly hoping for miracles. Penny for penny, we will do our part to try to stop this growing trend, to help save babies. We are lucky that our story became a success story, one of survival and bravery... not all of them are.
Please take a moment to consider little baby M, who was lost on Oct 20th in her 21st week of gestation. Our family mourns for her and her parents, who like us, are too young to have to experience such a terrible tragedy. L and B, our thoughts and prayers are with you, lean on each other, and love will see you through!
Please take a moment to consider little baby M, who was lost on Oct 20th in her 21st week of gestation. Our family mourns for her and her parents, who like us, are too young to have to experience such a terrible tragedy. L and B, our thoughts and prayers are with you, lean on each other, and love will see you through!
Tuesday, October 30, 2007
Civic Duty
Last night I took a vacation day to perform my civic duty... Most people think that civic duty only refers to voting, but there really is so much more to it. Last night Jon and I spoke on behave of our county's Birth to Three program before the County Board. Apparently they are planning to cut funding for the program for next year. Without the services of Birth to Three, I am not sure that Taylor would be doing most of the wonderful things that he does. I sincerely believe that he would still be laying where ever he was left and not moving at all. Livi was re-evaluated by the speech therapist a couple of weeks ago. Turns out that her skills are not keeping up with her growth, so she now receives services for that. This morning I had her re-evaluated for physical therapy as well. Turns out that she is slipping there too. Our PT has been working with her for a few months now during breaks in Taylor's visits, but now she officially has time to set aside just for Alivya. I am not worried that Livi won't do all things we expect of her, but I think with the added therapy, things will be less frustrating for her.
The board meeting was far more interesting than I thought it would be. I was surprised by the number of political groups that sent representatives, and I was even more surprised by the support that Parent Connection received. Parent Connection was really a waste of time for us, but I can see how it would be beneficial for new parents who did not get Birth to Three. I was also surprised at how un-impressed the board members were. As "concerned citizens" we were seated in the very back of the room. Of the 4 board members who were seated right in front if us only one of them seemed to be there... and he was more interested in looking around the room than actually listening to the presentation. The other three were reading a newspaper, checking their date book, and doing a crossword. Jon said only three of them actually looked at us during our speech. Disappointing... I hope some messages were heard.
The board meeting was far more interesting than I thought it would be. I was surprised by the number of political groups that sent representatives, and I was even more surprised by the support that Parent Connection received. Parent Connection was really a waste of time for us, but I can see how it would be beneficial for new parents who did not get Birth to Three. I was also surprised at how un-impressed the board members were. As "concerned citizens" we were seated in the very back of the room. Of the 4 board members who were seated right in front if us only one of them seemed to be there... and he was more interested in looking around the room than actually listening to the presentation. The other three were reading a newspaper, checking their date book, and doing a crossword. Jon said only three of them actually looked at us during our speech. Disappointing... I hope some messages were heard.
Friday, October 26, 2007
Hmm
Ok, so our readers don't like long entries...sorry. Time gets away from me, before I know it, it has been weeks since I last posted. I will make this brief... Jon- new job, T- cruising a lot, A- still thinking about walking, Julie- begging Jon to put more vids... especially the one for Tom... and working :)
short enough?
short enough?
Monday, October 15, 2007
SNOW GLOBE (warning: Its a long one!)
Ever feel like you are living in one of those little snow globe toys? One that belongs to a very naughty child who just can't leave the poor inhabitants alone?!
I DO!
I have been waiting to do this post for life to begin settling down, hahaha... yolk, as usual, is on ME! Where to start? hmmmm....
I was going to start with October 1st, but it seems that are woes probably started on September 27th. This was the day Taylor was scheduled for his Botox injections at Children's in Milwaukee... Jon had taken a vacation day, and I was off, we rescheduled the care take so that she could watch Livi, thus eliminating one child from the joy of four hours in the car... we were up early, had everything ready. Packed extra food, extra clothes, I even remembered to bring his orthodics! We knew that we could hit some left over morning rush traffic, so we left an extra 40 minutes early. Everything was going great! Taylor was asked to be at the office by 1:15, and we had to stop at the hospital that they kids were born at first. The doctor had asked us to pick up Taylor's Ultrasound reports from his stay at the NICU. So it was about 12:00 and we were just rolling into the outer limits of Milwaukee. The way I figured it, we would have just enough time to stop at the first hospital, which is about 15 minutes south of Children's. Then we would arrive at Children's just on time... it was FLAWLESS!
At 12:15, my phone rings... I answer expecting it to be the care taker at home with Livi... oh no... that would have been easy. Instead, it was the doctor's office. They were calling to ask if we had left home yet... I said, "are you kidding? You are aware that this is a two hour drive for us?" The snotty nurse said, "I know, but the doctor has pink eye," and very matter of fact-ly stated that we would "just have to reschedule". I was LIVID!!! Absolutely LIVID! I could not believe that there were no other doctors that could do this procedure. I could not believe her lack of compassion and understanding for all the trouble that we had gone through to be there. I actually think I would have rather risked the exposure to pink eye just to have it done with. There really is a lot to say for good hand washing!
Anyway, so we stopped at the NICU that the kids were at to say hello. Unfortunately there were not many nurses there that day that had taken care of them, and the two that had were disappointed that we only had Tay with us. Oh well... we didn't expect to be there for a social visit! Then we decided to stop at my old OB's office, since she had not seen the kids since they were still admitted there. I was super surprised (and delighted) to learn that she had left her practice there for a practice "up north". Now when folks around here (Appleton) say "up north" we mean extreme northern Wisconsin. If you are not north of the peninsula, you are NOT "up north". But we had spent enough time in Milwaukee to learn that when they say "up north" it means anything north of West Bend... which is like an hour north of Milwaukee... So I got really excited, I practically jumped over the desk as I demanded to know where "up North"... The poor lady was like, "umm, I think it... I think it was Neenah or Appleton, something like that..." I was so awful, totally forgot my manners, I said, "are joking?" I could not believe my little ears! Last year when we moved back here, I actually suggested to Jon that I just drive to Milwaukee for my annual lady stuff cause I really liked my OB/Gyn... Now, I DON'T HAVE TO! It was like I won the lottery, or something... weird, but good.
So if I would not have picked up extra hours at work, that I could not get out of in order to make T's original Oct 12th appointment, I would not have rescheduled his appointment for September 27th, then I would not have had his appointment cancelled, and I would not have stopped by the doctor's office just to see if she was in, and I would not have known that she left to move "up north" and I would not have the fabulous gyn that I had since I moved to Milwaukee!!! And who says there isn't fate?
Have I got you convinced? Keep reading...
So October third I volunteered, as I do every year, for the School Days program at the Grignon Mansion in Kaukauna. I was hyped up for a day away from my usual, work and babies. The morning was anything but usual, instead of my ugly morning stupor... half awake groaning at Jon for making too much noise, I was up... ugly and in stupor, but not because of him... haha We got dressed then went down and ate some very nutritious cereal... I don't cook breakfast often... if ever... Then he left for work, and about forty minutes later, I left for the day. On my way out the door, as I do every year, I grabbed my hot mug of chocolaty goodness... BIG hot cocoa fan! I was less than five minutes away when I decided that I just needed a little sip. I knew I should wait, I always seem to burn my lips cause I am driving and its hot... you know... so against my better judgement, I did it anyway. Well, I didn't burn anything, really, but the cover wasn't on right and it poured right down the front of my shirt! Then of course, I could not just let it go, I had to try to fix it, and try it again... haha, right down my arm this time. I remember at that moment thinking, "what a great start to this day!" If I only knew...
school Days was fun, and exhausting. 900 little buds of energy all wanting to talk at the same time, all wanting to jump right in to the activity before it has been explained, and none wanting to answer your questions (so I generally skip that part... I only have three minutes kid!) Anyway, I finished up my day and got in the car to go home. That is when the phone rang... don't all my stories seem to contain some dreaded phone call? hmm...
Anyway, so the phone call was from Jon, we was pissed. As it turned out, his new job is now his old job... we are still not really sure what happened there. Jon was really liking the environment, seemed to get along with everyone, and no one had told him at any point that there were any issues with his work. So it was really a shock to find out on that day that he was being let go for not working up to par... anyone heard of communication? How does one know that his/her work isn't meeting expectations unless someone comes along and says "hey, your work isn't meeting my expectations".... or something. So now he is back on the hunt, and we are in financial limbo... again...
We shot our first official wedding on Oct 7th as J&J Studios! It was a very long day, but we really had a good time, and some "extra" money was nice too. We learned a ton about our camera, churches (which are super hard to take photos at), and dancing... or lack there of... the poor DJ played tons of great music, but the Packer-Bear game was just too heavy competition. We took over 1500 shots, and narrowed it down to just 600 of the best. I think we captured every moment! I am super excited to hand over the final product, but processing has been slower than I expected. I just might have to trek down to the basement for a few hours this week to get some time away.
Oct 10th Jon and I took T back to Children's for his rescheduled Botox appointment. We were supposed to be there by 1015, but ran into some pretty heavy traffic and didn't get there until closer to 1025/1030... the nurse had told me on the phone that they would take him back early to apply the topical numbing cream and that I should only give T half the dose of oral sedation medication (they were worried about suppressing his respiratory system... causing his breathing to slow) Well I gave him half at 10 am... it did not even touch him, he was actually hyper, not sedated. At 11 we got into a room, at 11:40 we finally got the topical cream... by then the doctor had determined that whatever effect the oral medication had on T had probably worn off, and I should give him the other half. They said they would be back in twenty minutes, but didn't return for an hour... by then whatever effect the other half had, had also worn off. Not to mention that we had been sitting in an exam room with a hyper two year old for two hours... The actual procedure was fine. T screamed and turned all red and stuff, but it was only about ten minutes. When we were leaving at around 1:15 (three hours after we were supposed to be there) the doctor said to us "I think I may have mismanaged this appointment a little." UNDERSTATEMENT!
Taylor didn't sleep a wink that day, but was otherwise pretty content. The effects of the Botox are supposed to show up in following seven days, and I think that I have noticed a little difference already. But over all, he continues to pull to stand on everything and cruise around the furniture.
Jon had an interview this morning that he felt went well, and another one scheduled for Wednesday. Maybe fate will surprise us again. In the meantime... it's shaking at Meadowlark house these days!
I DO!
I have been waiting to do this post for life to begin settling down, hahaha... yolk, as usual, is on ME! Where to start? hmmmm....
I was going to start with October 1st, but it seems that are woes probably started on September 27th. This was the day Taylor was scheduled for his Botox injections at Children's in Milwaukee... Jon had taken a vacation day, and I was off, we rescheduled the care take so that she could watch Livi, thus eliminating one child from the joy of four hours in the car... we were up early, had everything ready. Packed extra food, extra clothes, I even remembered to bring his orthodics! We knew that we could hit some left over morning rush traffic, so we left an extra 40 minutes early. Everything was going great! Taylor was asked to be at the office by 1:15, and we had to stop at the hospital that they kids were born at first. The doctor had asked us to pick up Taylor's Ultrasound reports from his stay at the NICU. So it was about 12:00 and we were just rolling into the outer limits of Milwaukee. The way I figured it, we would have just enough time to stop at the first hospital, which is about 15 minutes south of Children's. Then we would arrive at Children's just on time... it was FLAWLESS!
At 12:15, my phone rings... I answer expecting it to be the care taker at home with Livi... oh no... that would have been easy. Instead, it was the doctor's office. They were calling to ask if we had left home yet... I said, "are you kidding? You are aware that this is a two hour drive for us?" The snotty nurse said, "I know, but the doctor has pink eye," and very matter of fact-ly stated that we would "just have to reschedule". I was LIVID!!! Absolutely LIVID! I could not believe that there were no other doctors that could do this procedure. I could not believe her lack of compassion and understanding for all the trouble that we had gone through to be there. I actually think I would have rather risked the exposure to pink eye just to have it done with. There really is a lot to say for good hand washing!
Anyway, so we stopped at the NICU that the kids were at to say hello. Unfortunately there were not many nurses there that day that had taken care of them, and the two that had were disappointed that we only had Tay with us. Oh well... we didn't expect to be there for a social visit! Then we decided to stop at my old OB's office, since she had not seen the kids since they were still admitted there. I was super surprised (and delighted) to learn that she had left her practice there for a practice "up north". Now when folks around here (Appleton) say "up north" we mean extreme northern Wisconsin. If you are not north of the peninsula, you are NOT "up north". But we had spent enough time in Milwaukee to learn that when they say "up north" it means anything north of West Bend... which is like an hour north of Milwaukee... So I got really excited, I practically jumped over the desk as I demanded to know where "up North"... The poor lady was like, "umm, I think it... I think it was Neenah or Appleton, something like that..." I was so awful, totally forgot my manners, I said, "are joking?" I could not believe my little ears! Last year when we moved back here, I actually suggested to Jon that I just drive to Milwaukee for my annual lady stuff cause I really liked my OB/Gyn... Now, I DON'T HAVE TO! It was like I won the lottery, or something... weird, but good.
So if I would not have picked up extra hours at work, that I could not get out of in order to make T's original Oct 12th appointment, I would not have rescheduled his appointment for September 27th, then I would not have had his appointment cancelled, and I would not have stopped by the doctor's office just to see if she was in, and I would not have known that she left to move "up north" and I would not have the fabulous gyn that I had since I moved to Milwaukee!!! And who says there isn't fate?
Have I got you convinced? Keep reading...
So October third I volunteered, as I do every year, for the School Days program at the Grignon Mansion in Kaukauna. I was hyped up for a day away from my usual, work and babies. The morning was anything but usual, instead of my ugly morning stupor... half awake groaning at Jon for making too much noise, I was up... ugly and in stupor, but not because of him... haha We got dressed then went down and ate some very nutritious cereal... I don't cook breakfast often... if ever... Then he left for work, and about forty minutes later, I left for the day. On my way out the door, as I do every year, I grabbed my hot mug of chocolaty goodness... BIG hot cocoa fan! I was less than five minutes away when I decided that I just needed a little sip. I knew I should wait, I always seem to burn my lips cause I am driving and its hot... you know... so against my better judgement, I did it anyway. Well, I didn't burn anything, really, but the cover wasn't on right and it poured right down the front of my shirt! Then of course, I could not just let it go, I had to try to fix it, and try it again... haha, right down my arm this time. I remember at that moment thinking, "what a great start to this day!" If I only knew...
school Days was fun, and exhausting. 900 little buds of energy all wanting to talk at the same time, all wanting to jump right in to the activity before it has been explained, and none wanting to answer your questions (so I generally skip that part... I only have three minutes kid!) Anyway, I finished up my day and got in the car to go home. That is when the phone rang... don't all my stories seem to contain some dreaded phone call? hmm...
Anyway, so the phone call was from Jon, we was pissed. As it turned out, his new job is now his old job... we are still not really sure what happened there. Jon was really liking the environment, seemed to get along with everyone, and no one had told him at any point that there were any issues with his work. So it was really a shock to find out on that day that he was being let go for not working up to par... anyone heard of communication? How does one know that his/her work isn't meeting expectations unless someone comes along and says "hey, your work isn't meeting my expectations".... or something. So now he is back on the hunt, and we are in financial limbo... again...
We shot our first official wedding on Oct 7th as J&J Studios! It was a very long day, but we really had a good time, and some "extra" money was nice too. We learned a ton about our camera, churches (which are super hard to take photos at), and dancing... or lack there of... the poor DJ played tons of great music, but the Packer-Bear game was just too heavy competition. We took over 1500 shots, and narrowed it down to just 600 of the best. I think we captured every moment! I am super excited to hand over the final product, but processing has been slower than I expected. I just might have to trek down to the basement for a few hours this week to get some time away.
Oct 10th Jon and I took T back to Children's for his rescheduled Botox appointment. We were supposed to be there by 1015, but ran into some pretty heavy traffic and didn't get there until closer to 1025/1030... the nurse had told me on the phone that they would take him back early to apply the topical numbing cream and that I should only give T half the dose of oral sedation medication (they were worried about suppressing his respiratory system... causing his breathing to slow) Well I gave him half at 10 am... it did not even touch him, he was actually hyper, not sedated. At 11 we got into a room, at 11:40 we finally got the topical cream... by then the doctor had determined that whatever effect the oral medication had on T had probably worn off, and I should give him the other half. They said they would be back in twenty minutes, but didn't return for an hour... by then whatever effect the other half had, had also worn off. Not to mention that we had been sitting in an exam room with a hyper two year old for two hours... The actual procedure was fine. T screamed and turned all red and stuff, but it was only about ten minutes. When we were leaving at around 1:15 (three hours after we were supposed to be there) the doctor said to us "I think I may have mismanaged this appointment a little." UNDERSTATEMENT!
Taylor didn't sleep a wink that day, but was otherwise pretty content. The effects of the Botox are supposed to show up in following seven days, and I think that I have noticed a little difference already. But over all, he continues to pull to stand on everything and cruise around the furniture.
Jon had an interview this morning that he felt went well, and another one scheduled for Wednesday. Maybe fate will surprise us again. In the meantime... it's shaking at Meadowlark house these days!
Saturday, October 06, 2007
Monday, October 01, 2007
Video: Alivya and Taylor of Course
I just got the files off of the computer and uploaded them to YouTube with the new iMovie in iLife. This is why Mac is light-years ahead of the PC. The whole process happened in one application and was extremely easy.
Sunday, September 23, 2007
Stuff
I finally finished the disk in the video camera... lets all hound Jon to get some of the video up... if you really want to see it, please leave a comment for him that says "PLEASE JON WE WANT TO SEE LIVI WALK!!!" or anything like that cause my nagging is loosing its effect!
As for Synagis, I contacted this place in Green Bay that is a non profit designed to help special needs parents find stuff they need. They did some searching and actually found out that the company that manufactures Synagis, Metimmune, actually has two programs to help people pay for it... so for those of you who were like us last year... you won't have to spend your savings just to have your child vaccinated against RSV. They have a program that is specifically for people like us who have high deductibles and copays. If you qualify, and I had some trouble figuring out what it takes to qualify, they will help you pay your deductible back. Since they pay you and you pay your insurance, it still counts towards your deductible... nice... where the h*ll were they last year? Sorry I just wonder who was supposed to know about this and why didn't they tell us. At this moment, we are waiting for an application, I will be posting more as we continue through this process... If anyone else is in this situation, please give it a try... spread the word! Call 1-877-633-4411 to get more info.
In kiddo news, Taylor will have his botox injections on Thursday. I am really hopeful that it helps him... we will see. Taylor is getting a new speech therapist on Wednesday too. I finally broke down and asked for someone new. Not that his previous therapist wasn't nice, but since last November, she really hasn't done anything with regard to his eating problems. Personally, we think that his speech/language skills are coming along well. More on that as it progresses... Taylor also has a new walker called a reverse walker. He can really take off in that, when he wants to. Finally, he also pulls himself to stand at the couch and in his crib... on anything that will hold him! I have video of that too...
Livi can walk, I have the a for mentioned video to prove it, she doesn't however care to walk much.
They both learn new words daily... at least they repeat us when we say them... Sorry Tom, I've tried... so far, they just look at me blankly. But they were all over "Apple" how does that work?
As for Synagis, I contacted this place in Green Bay that is a non profit designed to help special needs parents find stuff they need. They did some searching and actually found out that the company that manufactures Synagis, Metimmune, actually has two programs to help people pay for it... so for those of you who were like us last year... you won't have to spend your savings just to have your child vaccinated against RSV. They have a program that is specifically for people like us who have high deductibles and copays. If you qualify, and I had some trouble figuring out what it takes to qualify, they will help you pay your deductible back. Since they pay you and you pay your insurance, it still counts towards your deductible... nice... where the h*ll were they last year? Sorry I just wonder who was supposed to know about this and why didn't they tell us. At this moment, we are waiting for an application, I will be posting more as we continue through this process... If anyone else is in this situation, please give it a try... spread the word! Call 1-877-633-4411 to get more info.
In kiddo news, Taylor will have his botox injections on Thursday. I am really hopeful that it helps him... we will see. Taylor is getting a new speech therapist on Wednesday too. I finally broke down and asked for someone new. Not that his previous therapist wasn't nice, but since last November, she really hasn't done anything with regard to his eating problems. Personally, we think that his speech/language skills are coming along well. More on that as it progresses... Taylor also has a new walker called a reverse walker. He can really take off in that, when he wants to. Finally, he also pulls himself to stand at the couch and in his crib... on anything that will hold him! I have video of that too...
Livi can walk, I have the a for mentioned video to prove it, she doesn't however care to walk much.
They both learn new words daily... at least they repeat us when we say them... Sorry Tom, I've tried... so far, they just look at me blankly. But they were all over "Apple" how does that work?
Wednesday, September 12, 2007
Synagis Woes Again
For those of you who haven't heard about Synagis, let me educate you. Synagis, to my knowledge, is the only drug that is approved to help prophylacticly treat RSV. RSV is a common little virus that most of us have had, our immune system fights it like other colds, and we get over it. Preemies, however, and other immune compromised children, develop a much more severe version of the disease, and without prophylactic treatment, it can kill them. I have a video here that has all the nasty statistics about how many deaths a year are caused by RSV, but I really don't feel like watching it again... so take my word, its a lot. In my opinion, there are two major problems with Synagis... the first being that it has to be given monthly and is an injection. The second problem is the COST!!! One Synagis injection, for just one of my children can cost between 1100 and 2500 dollars based upon how much is needed for their weight. Multiply this times two children times seven months... holy hell, we are talking about a lot of money.
No one was more pleased than I was this summer when Taylor's lung doc informed me that he would not need Synagis this year, and neither would Alivya... sigh... relief. Last year it cost us over 1200 dollars out of pocket for Alivya's injections from January to April. The injections from October through December were covered at 100% since their NICU stays maxed out our out of pocket deductable. Thankfully Katie Becket took care of Taylor's extra cost, which would have been more since he weighed more.
So on Friday, the day we were blindsided by CP, we were also informed, almost as if it were a side note, that the children should have Synagis again this year. I was surprised since the original lung doc said no... so I thought I would converse with their pediatrician about the whole idea. So she called me back and said that yes, Taylor should get it, and because they are the same age and twins yada yada, Alivya should get it again this year.
PANIC
Not only do we not have the medical deductibles paid off this year as we did in 06, but we have a different kind of insurance this year... a crappy kind. Our new insurance does not pay a single cent per person until each person has met a $1400 deductible or we have spent $4000 all together, and of course these reset every year. Then there is the fact that they both weigh more now than last year... So I freak out and complain to the doctor's office that I can't afford it for Alivya, I even called Taylor's Katie Becket Rep and left a message to see if there is a flea's chance in hell that she might qualify too... The peds office calls me back and says, "well if Alivya doesn't qualify for Katie Becket, then she won't qualify for Synagis either." WTF? How did she qualify last year? Remember us paying 1200 out of pocket???? Would she have qualified last year? If so, maybe we would have 1200 to pay this year... of course if I figure this correctly, it will cost more like $3400 to get us from November through March... and last year they wanted October through April! These people must be insane!
PANIC....
No one was more pleased than I was this summer when Taylor's lung doc informed me that he would not need Synagis this year, and neither would Alivya... sigh... relief. Last year it cost us over 1200 dollars out of pocket for Alivya's injections from January to April. The injections from October through December were covered at 100% since their NICU stays maxed out our out of pocket deductable. Thankfully Katie Becket took care of Taylor's extra cost, which would have been more since he weighed more.
So on Friday, the day we were blindsided by CP, we were also informed, almost as if it were a side note, that the children should have Synagis again this year. I was surprised since the original lung doc said no... so I thought I would converse with their pediatrician about the whole idea. So she called me back and said that yes, Taylor should get it, and because they are the same age and twins yada yada, Alivya should get it again this year.
PANIC
Not only do we not have the medical deductibles paid off this year as we did in 06, but we have a different kind of insurance this year... a crappy kind. Our new insurance does not pay a single cent per person until each person has met a $1400 deductible or we have spent $4000 all together, and of course these reset every year. Then there is the fact that they both weigh more now than last year... So I freak out and complain to the doctor's office that I can't afford it for Alivya, I even called Taylor's Katie Becket Rep and left a message to see if there is a flea's chance in hell that she might qualify too... The peds office calls me back and says, "well if Alivya doesn't qualify for Katie Becket, then she won't qualify for Synagis either." WTF? How did she qualify last year? Remember us paying 1200 out of pocket???? Would she have qualified last year? If so, maybe we would have 1200 to pay this year... of course if I figure this correctly, it will cost more like $3400 to get us from November through March... and last year they wanted October through April! These people must be insane!
PANIC....
Monday, September 10, 2007
Working Poor
Within the past few weeks I remember flipping past a Tom Brokaw special about the working poor, then I remember seeing an article about it in our local paper. I wasn't altogether too motivated to read/watch either of these segments, since this is a phenomena I know all too well. Tonight, a very sick man shuffled into my ER. I am personally surprised that he was walking at all. He was hunched over and wore a very thick winter coat. I know that our weather suddenly changed over night, but I have serious doubts that it is so cold here that winter coats became appropriate. I personally wore only my scrub coat to work. After sitting down opposite me he told me that 18 years ago he had pneumonia, and tonight he feels just like he did then. I believe him. Pink with fever and a cold sweat, his hands shaking with chills. I got his birthday and name, ready to get him admitted, then he told me he could not afford to see a doctor. I insisted that we would see him, its the law, but he said I just can't afford it. All he wanted was a prescription for an antibiotic. He stood up, and shuffled out the door. I know he will be back. Probably on a stretcher this time.
It kills me to see so many patients come in on Medicaid for such little insignificant things. Another pt came in because he thought there was some metal in a wound that had gone so long that it was completely healed over... what makes them choose to come now? These patients do not think twice about using their Medicaid to pay for very insignificant visits, yet here is a man who is very sick who leaves. As he walked away, he said, I can't be sick, I have to paint tomorrow. The working poor...
It kills me to see so many patients come in on Medicaid for such little insignificant things. Another pt came in because he thought there was some metal in a wound that had gone so long that it was completely healed over... what makes them choose to come now? These patients do not think twice about using their Medicaid to pay for very insignificant visits, yet here is a man who is very sick who leaves. As he walked away, he said, I can't be sick, I have to paint tomorrow. The working poor...
Blindsided
A few good things...
Taylor has mastered the ability to climb one step. It takes a ton of effort, but when he is really motivated, up he goes.
Taylor had a six day "no vomiting" streak, which ended sadly yesterday morning.
Alivya's nasty molar finally popped through, hopefully my little happy cute baby girl will shove little cranky pants back in the closet for a while :)
A few less good things...
Livi has been absolutely miserable to live with for nearly a week!
Livi hasn't eaten anything well in over five days.
Taylor vomited twice yesterday, and already this morning.
And one thing that caught us completely off guard....
Last Friday I had follow up appointments for both kids at the Children's Hospital of Wisconsin in Milwaukee. Aside from being a four hour round trip drive, we had appointments from 10:45 until 1:45, ugh. Taylor's first appointment with the Pulmonologist (lung doc) went as expected. The next appointments with the Ophthalmologist (eye doc) also went well. Fast, which is really good, cause she was so abrasive. I am so glad we won't be seeing her again. Finally Taylor's last appointment was with a Pediatric Rehab Specialist. This appointment was also a follow up, but I have been concerned about the fact that Taylor tends to pull his left leg under him. He has also has problems when the PT would try to stretch his left leg. Finally, when he stands, he always pulls the left leg up instinctively, then lowers it to the floor where his foot pulls inward and ends up with the side of his foot on the ground instead of his sole. The doctors spent a lot of time with Taylor, and did a number of exercises in the office. When they were finished they told me that it wasn't my imagination and it there was indeed a problem. So far people have acted like this behavior was no big deal. They told me that what we had been observing is a bilateral a-symmetry of Taylor's lower extremities. Although I had always assumed that this was a musculo-skeletal problem, they told me that it was a central nervous system problem. They gave Taylor the diagnosis of Mild Left sided spastic hemiparesis, a form of Cerebral Palsy (CP).
Cerebral Palsy is basically an over activity of brain signals as a result of some sort of brain damage. For preemies and very low birth weight babies, like Taylor, CP is usually caused by bleeding into the brain that occurs within 3 days after birth. This is referred to as intraventricular hemorrhage (IVH) and is graded on a scale of 1 to 4. IVH is caused by the fact that little preemie brains are not well developed and blood vessels in the brain rupture very easily. Grade 4 IVHs are considered the most severe, and almost always end up causing very extensive brain damage and CP. Taylor's initial ultrasound diagnosing his IVH was graded at 2, and Alivya's at 1. Doctors do several of these ultrasounds in the first few days after birth. These new scans tell them if the bleed is continuing to get worse, or if it is resolving. Both of the babies second ultrasounds showed that their bleeds were in fact resolving. CP is not something that can be diagnosed immediately following the diagnosis of a bleed. CP is usually diagnosed by the time the child is 3, and is diagnosed based on a history of IVH or low birth weight, and symptoms of developmental delays. Since the bleed is resolved, it is not continuing to cause more damage to the brain. Thus CP, caused by IVH in prematurity, is non- progressive.
Although I understand that the diagnosis changes little in terms of his future, it really blindsided me. I never expected this to be the cause. The impact though, of this diagnosis, is that his eating and vomiting issues may also be related to the CP rather than simply just sensory problems. These are things that will need to be discussed with his other specialists, now that the diagnosis has been made.
The doctors both said that they believe Taylor will walk, and I never believed that he would not, but it will be more of a challenge for him, given that his CP is mostly affecting his leg. There is no treatment or cure for CP, but they can try to treat some of the effects of it. For example, Taylor's left leg problem is that the brain is sending so many signals to the muscles that the muscles are constantly contracting. Therefore he can't straighten his leg because he can't tell the muscles to stop contracting. To help with this, the doctor will treat Taylor with Botox injections. The goal is to use the Botox to weaken the muscles that are in constant contraction. So even though his brain will still be telling the muscle to contract, its ability to do so will be less causing hopefully causing his leg to fall into better alignment.
I am not sure how often this will need to be done, cause I didn't think to ask that until after we left. I will ask at our next appointment, October 12th. The doctor did say that we may notice more issues during time in which Taylor has growth spurts. It is not that the problem (the brain damage) is getting worse, but that he is growing and the effects might be seen more readily.
I feel very ok about Taylor's gross motor potential, I have seen him come so far already. I worry about how this might be affecting his eating and GI system, and if there will also be ways to treat him for anything that might be affected by the CP. With the eating being a sensory problem, there was significant reason to believe that he would get past the issues and eventually become so independent of the tube feedings that it could be removed. Now, I am not sure that this will happen, of course, I am not sure that it won't either. I guess only time will tell.
Taylor has mastered the ability to climb one step. It takes a ton of effort, but when he is really motivated, up he goes.
Taylor had a six day "no vomiting" streak, which ended sadly yesterday morning.
Alivya's nasty molar finally popped through, hopefully my little happy cute baby girl will shove little cranky pants back in the closet for a while :)
A few less good things...
Livi has been absolutely miserable to live with for nearly a week!
Livi hasn't eaten anything well in over five days.
Taylor vomited twice yesterday, and already this morning.
And one thing that caught us completely off guard....
Last Friday I had follow up appointments for both kids at the Children's Hospital of Wisconsin in Milwaukee. Aside from being a four hour round trip drive, we had appointments from 10:45 until 1:45, ugh. Taylor's first appointment with the Pulmonologist (lung doc) went as expected. The next appointments with the Ophthalmologist (eye doc) also went well. Fast, which is really good, cause she was so abrasive. I am so glad we won't be seeing her again. Finally Taylor's last appointment was with a Pediatric Rehab Specialist. This appointment was also a follow up, but I have been concerned about the fact that Taylor tends to pull his left leg under him. He has also has problems when the PT would try to stretch his left leg. Finally, when he stands, he always pulls the left leg up instinctively, then lowers it to the floor where his foot pulls inward and ends up with the side of his foot on the ground instead of his sole. The doctors spent a lot of time with Taylor, and did a number of exercises in the office. When they were finished they told me that it wasn't my imagination and it there was indeed a problem. So far people have acted like this behavior was no big deal. They told me that what we had been observing is a bilateral a-symmetry of Taylor's lower extremities. Although I had always assumed that this was a musculo-skeletal problem, they told me that it was a central nervous system problem. They gave Taylor the diagnosis of Mild Left sided spastic hemiparesis, a form of Cerebral Palsy (CP).
Cerebral Palsy is basically an over activity of brain signals as a result of some sort of brain damage. For preemies and very low birth weight babies, like Taylor, CP is usually caused by bleeding into the brain that occurs within 3 days after birth. This is referred to as intraventricular hemorrhage (IVH) and is graded on a scale of 1 to 4. IVH is caused by the fact that little preemie brains are not well developed and blood vessels in the brain rupture very easily. Grade 4 IVHs are considered the most severe, and almost always end up causing very extensive brain damage and CP. Taylor's initial ultrasound diagnosing his IVH was graded at 2, and Alivya's at 1. Doctors do several of these ultrasounds in the first few days after birth. These new scans tell them if the bleed is continuing to get worse, or if it is resolving. Both of the babies second ultrasounds showed that their bleeds were in fact resolving. CP is not something that can be diagnosed immediately following the diagnosis of a bleed. CP is usually diagnosed by the time the child is 3, and is diagnosed based on a history of IVH or low birth weight, and symptoms of developmental delays. Since the bleed is resolved, it is not continuing to cause more damage to the brain. Thus CP, caused by IVH in prematurity, is non- progressive.
Although I understand that the diagnosis changes little in terms of his future, it really blindsided me. I never expected this to be the cause. The impact though, of this diagnosis, is that his eating and vomiting issues may also be related to the CP rather than simply just sensory problems. These are things that will need to be discussed with his other specialists, now that the diagnosis has been made.
The doctors both said that they believe Taylor will walk, and I never believed that he would not, but it will be more of a challenge for him, given that his CP is mostly affecting his leg. There is no treatment or cure for CP, but they can try to treat some of the effects of it. For example, Taylor's left leg problem is that the brain is sending so many signals to the muscles that the muscles are constantly contracting. Therefore he can't straighten his leg because he can't tell the muscles to stop contracting. To help with this, the doctor will treat Taylor with Botox injections. The goal is to use the Botox to weaken the muscles that are in constant contraction. So even though his brain will still be telling the muscle to contract, its ability to do so will be less causing hopefully causing his leg to fall into better alignment.
I am not sure how often this will need to be done, cause I didn't think to ask that until after we left. I will ask at our next appointment, October 12th. The doctor did say that we may notice more issues during time in which Taylor has growth spurts. It is not that the problem (the brain damage) is getting worse, but that he is growing and the effects might be seen more readily.
I feel very ok about Taylor's gross motor potential, I have seen him come so far already. I worry about how this might be affecting his eating and GI system, and if there will also be ways to treat him for anything that might be affected by the CP. With the eating being a sensory problem, there was significant reason to believe that he would get past the issues and eventually become so independent of the tube feedings that it could be removed. Now, I am not sure that this will happen, of course, I am not sure that it won't either. I guess only time will tell.
Thursday, September 06, 2007
Touching is good.
Sometimes I feel that Apple and Nintendo are sister companies, especially recently. The iPod, Wii, and DS seemed to be marketed to exactly the same people.
Apple had a keynote yesterday about their iPods.
iPod Shuffle
I never really understood the shuffle except maybe for exercising being so small. New colors, no big deal really, guess they felt like they had to put it in their somewhere.
iPod Nano
It is nice that it now plays movies and photos. I like the new interface as well. Does look a little like the original Nanos fat little brother. To me the problem with the Nano has always been capacity. 4 GB is not enough, and 8 GB is just barley cutting it if you have some nifty ways of managing play lists and such.
iPod Classic
Holy gigabytes Batman! 80 GB, and that's the cheap version. 160 GB for the large one. That is just overkill in my opinion. How could you navigate that much stuff on an iPod?
iPod Touch
Sorry honey... WANT!!!! This is basically an iPhone with the phone ripped out, which is a good thing in my opinion. Not having the battery life of my phone connected to the battery life of my iPod is important. My phone is always charged while my iPod is occasionally not.
The storage capacity is also right. 16 GB in the larger version, which is plenty in my opinion, and its flash memory. Computer hardware vendors are starting to sell a 64 GB flash hard drive. While way more expensive and less size than a regular hard drive it is more reliable since it has no moving parts and less draining for batteries, which is good for notebooks. In a few years most notebooks will probably at least have a flash memory option.
One question I have is whether or not you can sync your iPod over WiFi since it has built in WiFi, that would be nice. Also, I don't know if Google Calender supports the Safari web browser. Being able to update my calender from anywhere with a WiFi connection without my notebook would also be nice. As far as having a built in iTunes Store I could care less, I never buy things from iTunes. For me it is all about the Podcasts.
They did mention some other stuff. Ringtones, snore. Starbucks partnership, yawn. YouTube, crickets. Why do you need a YouTube application when you have a browser already?
Apple had a keynote yesterday about their iPods.
iPod Shuffle
I never really understood the shuffle except maybe for exercising being so small. New colors, no big deal really, guess they felt like they had to put it in their somewhere.
iPod Nano
It is nice that it now plays movies and photos. I like the new interface as well. Does look a little like the original Nanos fat little brother. To me the problem with the Nano has always been capacity. 4 GB is not enough, and 8 GB is just barley cutting it if you have some nifty ways of managing play lists and such.
iPod Classic
Holy gigabytes Batman! 80 GB, and that's the cheap version. 160 GB for the large one. That is just overkill in my opinion. How could you navigate that much stuff on an iPod?
iPod Touch
Sorry honey... WANT!!!! This is basically an iPhone with the phone ripped out, which is a good thing in my opinion. Not having the battery life of my phone connected to the battery life of my iPod is important. My phone is always charged while my iPod is occasionally not.
The storage capacity is also right. 16 GB in the larger version, which is plenty in my opinion, and its flash memory. Computer hardware vendors are starting to sell a 64 GB flash hard drive. While way more expensive and less size than a regular hard drive it is more reliable since it has no moving parts and less draining for batteries, which is good for notebooks. In a few years most notebooks will probably at least have a flash memory option.
One question I have is whether or not you can sync your iPod over WiFi since it has built in WiFi, that would be nice. Also, I don't know if Google Calender supports the Safari web browser. Being able to update my calender from anywhere with a WiFi connection without my notebook would also be nice. As far as having a built in iTunes Store I could care less, I never buy things from iTunes. For me it is all about the Podcasts.
They did mention some other stuff. Ringtones, snore. Starbucks partnership, yawn. YouTube, crickets. Why do you need a YouTube application when you have a browser already?
Saturday, September 01, 2007
I do what I'm told...
Here are some newer pictures of the kids.
Here is Livi being very naughty covered in black berries, one of her favorite foods.
Taylor and Nicolas, partners in crime, playing with the toys Nicolas got for his first birthday.
Here is Livi being very naughty covered in black berries, one of her favorite foods.
Taylor and Nicolas, partners in crime, playing with the toys Nicolas got for his first birthday.
Monday, August 27, 2007
Step by Step
So I really wanted to post the video... but in order to do that, we would have to finalize the disk, and frankly, I am not prepared to finalize a disk for litterally 40 seconds of footage... even if it is of Alivya walking and standing up on her own!!!!
She took her first steps on Monday, August 20th. Jon was home and the story goes that she stood up in the middle of the room, stumbled forward two steps and fell to her tiny cute little knees.
Since then, I got her doing it on video the next day, but she doesn't take too many attempts at it. We try to work with her everyday a little bit, but I am sure she will take off sooner or later. Performance anxiety... she had the same problem when she first rolled over. hehe...
And the vomiting continues (doesn't it Tanya?!)
tootles!
She took her first steps on Monday, August 20th. Jon was home and the story goes that she stood up in the middle of the room, stumbled forward two steps and fell to her tiny cute little knees.
Since then, I got her doing it on video the next day, but she doesn't take too many attempts at it. We try to work with her everyday a little bit, but I am sure she will take off sooner or later. Performance anxiety... she had the same problem when she first rolled over. hehe...
And the vomiting continues (doesn't it Tanya?!)
tootles!
Thursday, August 23, 2007
Tuesday, August 21, 2007
Monday, August 20, 2007
Disabled-Handicapped-Special Needs
Over the past week or so, a few of the bloggers that I read on a regular basis have addressed the topic of disabled, handicapped or special needs children. They commented on several aspects of caring for special needs kids including developmental milestones, onlookers/commenters, and referring to preemies as fetus' (among other things). After reading some of these posts, I found myself a bit worked up, and I knew that I would need to address it at some point... just not in that moment.
So I have had a few days to mull over my thoughts and clear my head. I wanted to think about all their points, and I had to think really hard about why I felt the way I did. So here goes!
Developmental Milestones: I do not believe that preemie parents correlate the success of their children developmentally to the love or desire to want their children. Color me naive, but I simply don't believe that a Mom/Dad who worries about their child walking someday some how equates to that same mom/dad wishing that they never had a child. I don't believe they love that child any less, I don't believe that it causes them embarrassment or dishonor of any kind.
I do believe that preemie parents are inundated constantly with "what to expect at age __" lists upon lists of developmental markers. We get it from their doctors, nurses, early intervention therapists, etc. It is constantly thrown at you... this is the list of developmental things your child does, this is what we expect a child his/her age to do. I think part of why we worry about our children meeting these markers is simply so we don't have to hear the word "delay" yet again.
I think a huge part of it is because no parent gets pregnant and says, "gee, I sure hope I have a _____ (insert word of choice for handicapped/disabled/special needs) child!" This would sound ridiculous. Deep down, even though a parent may accept their disabled child, they would not wish that their next child would also be disabled. Feel free to disagree with me on this point, but I would be willing to bet money that the majority would agree with me.
Finally, I think that when a special needs child actually does reach developmental milestones, we, as parents, say, "and so and so said he/she would never do that". It is a reminder of how far we have all come, the child and the parents. It is a reminder that miracles do happen, and at least to us parents, our child(ren) is/are miracles.
So, yes, I worry about developmental milestones, I fear the unknowns out there. I fear my ability to cope, I fear the strength of our family structure. Even the strongest of materials will fail when battered consistently with gale force winds! But, for my little extra bit of worrying, since as a preemie mom I worry about tons of other stuff most parents don't, I get tons of extra joy when even a tiny accomplishment is made on the developmental side of life!
Onlookers/gawkers/commenters: Yes, people have generally lost grip on their manners. Having said that, most of the people that we have run into have asked questions out of concern, left offering a compliment, and sincerely mean well. I use the opportunity to teach people about preemies. I tell them that my babies came well before they should have, like millions of babies each year. I tell them that we need more research to find better treatments for pre-term labor and to understand why it occurs. I tell them that my children are basically normal kids who do things according to when they should have been born, not when they were. I explain Taylor's equipment and why he needs it. I believe that knowledge is power.
Fetus': This deserves no comments, go watch Horton Hears a Who....
So I have had a few days to mull over my thoughts and clear my head. I wanted to think about all their points, and I had to think really hard about why I felt the way I did. So here goes!
Developmental Milestones: I do not believe that preemie parents correlate the success of their children developmentally to the love or desire to want their children. Color me naive, but I simply don't believe that a Mom/Dad who worries about their child walking someday some how equates to that same mom/dad wishing that they never had a child. I don't believe they love that child any less, I don't believe that it causes them embarrassment or dishonor of any kind.
I do believe that preemie parents are inundated constantly with "what to expect at age __" lists upon lists of developmental markers. We get it from their doctors, nurses, early intervention therapists, etc. It is constantly thrown at you... this is the list of developmental things your child does, this is what we expect a child his/her age to do. I think part of why we worry about our children meeting these markers is simply so we don't have to hear the word "delay" yet again.
I think a huge part of it is because no parent gets pregnant and says, "gee, I sure hope I have a _____ (insert word of choice for handicapped/disabled/special needs) child!" This would sound ridiculous. Deep down, even though a parent may accept their disabled child, they would not wish that their next child would also be disabled. Feel free to disagree with me on this point, but I would be willing to bet money that the majority would agree with me.
Finally, I think that when a special needs child actually does reach developmental milestones, we, as parents, say, "and so and so said he/she would never do that". It is a reminder of how far we have all come, the child and the parents. It is a reminder that miracles do happen, and at least to us parents, our child(ren) is/are miracles.
So, yes, I worry about developmental milestones, I fear the unknowns out there. I fear my ability to cope, I fear the strength of our family structure. Even the strongest of materials will fail when battered consistently with gale force winds! But, for my little extra bit of worrying, since as a preemie mom I worry about tons of other stuff most parents don't, I get tons of extra joy when even a tiny accomplishment is made on the developmental side of life!
Onlookers/gawkers/commenters: Yes, people have generally lost grip on their manners. Having said that, most of the people that we have run into have asked questions out of concern, left offering a compliment, and sincerely mean well. I use the opportunity to teach people about preemies. I tell them that my babies came well before they should have, like millions of babies each year. I tell them that we need more research to find better treatments for pre-term labor and to understand why it occurs. I tell them that my children are basically normal kids who do things according to when they should have been born, not when they were. I explain Taylor's equipment and why he needs it. I believe that knowledge is power.
Fetus': This deserves no comments, go watch Horton Hears a Who....
Friday, August 17, 2007
Uh Ohhhhh
I guess my last few posts have been a little too intense... I didn't mean to kill my readership, hehe... Ok, so I am not a very funny person, the truth is I never have been. I guess its because I find humor in things ironic and sarcastic, which to most people is not too funny, I guess. So please accept this as my official apology for constantly trying to be funny, while knowing that it is impossible.
My husband tells me that I am a pretty good story teller, however I never think I do such a good job in text... but I will try...
A few days ago I was sitting in the rocker in our toy/library room while Taylor was getting his two month health check by his home health nurse. Alivya was sitting in their little rocker (which used to be the chair to their swing... I love Fisher Price!) She was drinking milk from her evil sippy cup...
I decided to take the bottle away, and in its placed I have offered her a Nuby cup. This particular sippy is a lot like a bottle because it comes with a silicon spout, just like a nipple. Jon and I decided that we would transition from the bottle to the Nuby to the open cup. The speech therapist and all the baby police out there want everyone to know that sippy cups are EVIL... they don't allow babies to develop oral motor skills as appropriately as they should. That said, there is something to say about moderation. Generally, the children who are ending up with oral motor problems and developmental abnormalities of the teeth and mouth are those children who are sucking on bottles and sippies constantly all day long. We offer Alivya a sippy only during her normal bottle feeding times, three times per day. She gets one in the morning, one with brunch and one with dinner. Tonight, we also gave her the cut out cup with water. Just a few weeks ago, every time we offered the open cup, she pushed it away. Tonight, she grabbed it with both hands, brought it to her mouth and downed every last drop (well what didn't end up in her lap anyway). See, our method is working, and I am very sorry, but I don't see any oral motor problems to date!
Anyway, so back to sitting in her little miniature rocker sucking down chilled milk from an EVIL sippy... Suddenly she looks up, places the sippy over the edge and promptly lets go. She looks up at me, the nurse, and Terra, and says, "Uh Oooohhhh!" We all just about died laughing. She had perfected the whole look of shock and everything. I think this stems from the fact that every time they throw stuff off their highchairs, Jon and I in unison say "Uh oh, you dropped it, all gone!" Its so funny watching them become us!
Since we have completed the installation of our hardwood floor, which looks fantastic, we went out and bought this swiffer vaccum thing. It works great. Tonight though, Taylor followed me around the whole room as I tried to clean up after dinner. He looked sincerely disappointed that I didn't share it with him. So I put it away, and Jon and I sat on the couch for our evening hour or so of TV.. Taylor and Alivya were playing in the dinning room part as quietly as two 18 month old kids play... when all of sudden I see this silver colored pad come inching around the couch... then a pole, and at the end was a Taylor. He looked up at me with that enormous proud Taylor grin... his face read, "Look at what I'VE GOT!!! hehehe!" It was too funny.
So I hope you've enjoyed a dose of the regular scheduled programming... as my husband put it...
FYI, We're offering a little bit of evil to Taylor too... he loves holding on to those two Taylor sized handles while letting water drip into his waiting mouth... someday I will even put in the plunger and make him work for it... gasp!!!
My husband tells me that I am a pretty good story teller, however I never think I do such a good job in text... but I will try...
A few days ago I was sitting in the rocker in our toy/library room while Taylor was getting his two month health check by his home health nurse. Alivya was sitting in their little rocker (which used to be the chair to their swing... I love Fisher Price!) She was drinking milk from her evil sippy cup...
I decided to take the bottle away, and in its placed I have offered her a Nuby cup. This particular sippy is a lot like a bottle because it comes with a silicon spout, just like a nipple. Jon and I decided that we would transition from the bottle to the Nuby to the open cup. The speech therapist and all the baby police out there want everyone to know that sippy cups are EVIL... they don't allow babies to develop oral motor skills as appropriately as they should. That said, there is something to say about moderation. Generally, the children who are ending up with oral motor problems and developmental abnormalities of the teeth and mouth are those children who are sucking on bottles and sippies constantly all day long. We offer Alivya a sippy only during her normal bottle feeding times, three times per day. She gets one in the morning, one with brunch and one with dinner. Tonight, we also gave her the cut out cup with water. Just a few weeks ago, every time we offered the open cup, she pushed it away. Tonight, she grabbed it with both hands, brought it to her mouth and downed every last drop (well what didn't end up in her lap anyway). See, our method is working, and I am very sorry, but I don't see any oral motor problems to date!
Anyway, so back to sitting in her little miniature rocker sucking down chilled milk from an EVIL sippy... Suddenly she looks up, places the sippy over the edge and promptly lets go. She looks up at me, the nurse, and Terra, and says, "Uh Oooohhhh!" We all just about died laughing. She had perfected the whole look of shock and everything. I think this stems from the fact that every time they throw stuff off their highchairs, Jon and I in unison say "Uh oh, you dropped it, all gone!" Its so funny watching them become us!
Since we have completed the installation of our hardwood floor, which looks fantastic, we went out and bought this swiffer vaccum thing. It works great. Tonight though, Taylor followed me around the whole room as I tried to clean up after dinner. He looked sincerely disappointed that I didn't share it with him. So I put it away, and Jon and I sat on the couch for our evening hour or so of TV.. Taylor and Alivya were playing in the dinning room part as quietly as two 18 month old kids play... when all of sudden I see this silver colored pad come inching around the couch... then a pole, and at the end was a Taylor. He looked up at me with that enormous proud Taylor grin... his face read, "Look at what I'VE GOT!!! hehehe!" It was too funny.
So I hope you've enjoyed a dose of the regular scheduled programming... as my husband put it...
FYI, We're offering a little bit of evil to Taylor too... he loves holding on to those two Taylor sized handles while letting water drip into his waiting mouth... someday I will even put in the plunger and make him work for it... gasp!!!
Thursday, August 16, 2007
And Another One Bites the Dust
Back when I was in high school, ions ago, there was a science teacher who played the song "Another One Bites the Dust" by Queen, anytime a student dropped one of his classes. At one point during my Junior year, I was trying to orchestrate nothing less than magic to get my class schedule exactly how I wanted it, and was considering dropping my science class and going into one of his classes. He suggested that he might have to play the song backwards... Unfortunately though, I never ended up switching into his class... no magic that year.
I was reminded of this song as I left another tragic shift behind. Not to over-dramatize the situation, we acquired three critical patients via EMS (basically 911) this morning. The first two patients, although very critical, came back... third time was definitely NOT a charm today, and the third patient died. I felt pretty helpless as the widowed spouse pretty much knew the situation was bad, maybe even that the patient would not make it, but was completely alone. With the children out of state there was only a brother available, and I guess he was not home on the first attempt to contact. I offered my hand and said a quick prayer, which is not something that I normally do. I just could not imagine the sorrow that this person was feeling at that moment.
When I complete a registration for an ambulance patient, I always bring the paperwork to the room. The sight in our trauma room today, a room that I first entered just a week ago, was even too much for me to take in. There were doctors and nurses working on the patient, surprisingly in relative silence... it was not the chaos that one might expect during a huge trauma... there were nurses and scribes recording the activities in the room, there was a member of the clergy- dressed in brown dress pants and brown long sleeved dress shirt- no bible, no crosses, no collar. He stood by silently (praying probably) as everyone did everything medically possible for the patient. There was the patient, who I usually say, was trying to die. And then there was me. I stood in the door way trying to decide where I could slip the chart so that I would not get in any one's way, or get into anything I shouldn't. Funny to me how much contemplation I took before making my move.
I can't explain all the perplexity that I saw in the situation, but it is not an image that I will soon forget. These moments allow me to appreciate our medical expertise for what it is, and not necessarily what we hoped it would be.
I was reminded of this song as I left another tragic shift behind. Not to over-dramatize the situation, we acquired three critical patients via EMS (basically 911) this morning. The first two patients, although very critical, came back... third time was definitely NOT a charm today, and the third patient died. I felt pretty helpless as the widowed spouse pretty much knew the situation was bad, maybe even that the patient would not make it, but was completely alone. With the children out of state there was only a brother available, and I guess he was not home on the first attempt to contact. I offered my hand and said a quick prayer, which is not something that I normally do. I just could not imagine the sorrow that this person was feeling at that moment.
When I complete a registration for an ambulance patient, I always bring the paperwork to the room. The sight in our trauma room today, a room that I first entered just a week ago, was even too much for me to take in. There were doctors and nurses working on the patient, surprisingly in relative silence... it was not the chaos that one might expect during a huge trauma... there were nurses and scribes recording the activities in the room, there was a member of the clergy- dressed in brown dress pants and brown long sleeved dress shirt- no bible, no crosses, no collar. He stood by silently (praying probably) as everyone did everything medically possible for the patient. There was the patient, who I usually say, was trying to die. And then there was me. I stood in the door way trying to decide where I could slip the chart so that I would not get in any one's way, or get into anything I shouldn't. Funny to me how much contemplation I took before making my move.
I can't explain all the perplexity that I saw in the situation, but it is not an image that I will soon forget. These moments allow me to appreciate our medical expertise for what it is, and not necessarily what we hoped it would be.
Monday, August 13, 2007
Morgues and more
So after seven days in a row of work, I had three short days off. They were filled with lots of vomit, anger... ok, frustration, and dread as my down time ticked away ever so quickly. Tonight, I am back at work... training... Don't get me wrong, I like to train, I just don't like sitting here bored because my little apprentice is basically trained. So I have already spent 7 and one half hours basically clock sitting.
I did have five minutes of morbid amusement... I had just informed a couple of nurses that they could not have the morgue key since another pair had just checked it out. I turned to my co-worker, and joked that the "the morgue was full"! The first ladies returned the key, and I called the other pair to let them know that it was available. Minutes after returning the key, the nurse returned and informed me that she would have to come back, or the funeral director would have to go up to he floor... the morgue WAS full! She was gone no more than a minute when the funeral director arrived for the first pt. Less than a minute after that, the nurse returned, and two to three minutes after that, the funeral director for her pt arrived. So why was this all so amusing? Well funeral directors look exactly like what you would expect a funeral director to look like. They dress mainly in black coats with black pants. The women, and there are quite a few women in the profession around here, generally do not wear a lot of make up, and tend to have simply tied up hair. So as I sat here, resolving the issue of "the morgue is full", I picture our patients... panicked and afraid... walking into our waiting room full of funeral directors discussing the morgue and whose is whose...
So of course there is nothing very funny about death, but I guess a person in this profession (or that of a funeral director for that matter) must find some sort of humor where they can.
As a nursing student, and an emergency room employee, I have always sort of feared the thought of the morgue. I mean, its supposed to be this creepy place where dead bodies are refrigerated until the Hurst comes along to take them to their own refrigerator of death... I used to wonder about how nurses handled bring their recently passed patients there. Once when I worked in my first ER, I forced myself to watch as the nurses and techs prepared a body to go to the morgue. It was my way of beginning to try to understand death and how to deal with it as a nurse. It wasn't until my father died, that I realized that a freshly dead body is not too different from that of living body. I realized that there is after all, a human in death, and although there spirit has left, their presence remains.
During the week prior to his passing, many people told me that I would feel his spirit leave. They said this as if it would be an obvious last moment on earth. Although I don't think they were wrong in how they assessed their experiences, mine was quite different. Perhaps it was because I clung to his memory, or maybe because I wanted him to wait for our family, but I didn't feel a sense of release. I felt confusion. I knew he was gone, I could not find his pulse, but I believed that I was wrong. I called the hospice nurse over, after listening to his chest for a full minute, he simply nodded his head. It was this moment that even I could not deny.
I am not sure what brought me to share this moment tonight, maybe I am some how relieved that Daddy never had to occupy space in the morgue. No one was to find their own proverbial manger as there was no room in the morgue. I think about Daddy every day, I wonder how I did. Did I do enough in those final days, could I have done more, what he would say to me about my life now (that he is gone), how upset he would be about Mom's new dog... Usually I hear a song, or see a building, or simply have a little musing about the morgue... anything at any time triggers all my memories, the good, the bad, the ugly, to come flooding back. Jon says its normal, I hope he is right.
I did have five minutes of morbid amusement... I had just informed a couple of nurses that they could not have the morgue key since another pair had just checked it out. I turned to my co-worker, and joked that the "the morgue was full"! The first ladies returned the key, and I called the other pair to let them know that it was available. Minutes after returning the key, the nurse returned and informed me that she would have to come back, or the funeral director would have to go up to he floor... the morgue WAS full! She was gone no more than a minute when the funeral director arrived for the first pt. Less than a minute after that, the nurse returned, and two to three minutes after that, the funeral director for her pt arrived. So why was this all so amusing? Well funeral directors look exactly like what you would expect a funeral director to look like. They dress mainly in black coats with black pants. The women, and there are quite a few women in the profession around here, generally do not wear a lot of make up, and tend to have simply tied up hair. So as I sat here, resolving the issue of "the morgue is full", I picture our patients... panicked and afraid... walking into our waiting room full of funeral directors discussing the morgue and whose is whose...
So of course there is nothing very funny about death, but I guess a person in this profession (or that of a funeral director for that matter) must find some sort of humor where they can.
As a nursing student, and an emergency room employee, I have always sort of feared the thought of the morgue. I mean, its supposed to be this creepy place where dead bodies are refrigerated until the Hurst comes along to take them to their own refrigerator of death... I used to wonder about how nurses handled bring their recently passed patients there. Once when I worked in my first ER, I forced myself to watch as the nurses and techs prepared a body to go to the morgue. It was my way of beginning to try to understand death and how to deal with it as a nurse. It wasn't until my father died, that I realized that a freshly dead body is not too different from that of living body. I realized that there is after all, a human in death, and although there spirit has left, their presence remains.
During the week prior to his passing, many people told me that I would feel his spirit leave. They said this as if it would be an obvious last moment on earth. Although I don't think they were wrong in how they assessed their experiences, mine was quite different. Perhaps it was because I clung to his memory, or maybe because I wanted him to wait for our family, but I didn't feel a sense of release. I felt confusion. I knew he was gone, I could not find his pulse, but I believed that I was wrong. I called the hospice nurse over, after listening to his chest for a full minute, he simply nodded his head. It was this moment that even I could not deny.
I am not sure what brought me to share this moment tonight, maybe I am some how relieved that Daddy never had to occupy space in the morgue. No one was to find their own proverbial manger as there was no room in the morgue. I think about Daddy every day, I wonder how I did. Did I do enough in those final days, could I have done more, what he would say to me about my life now (that he is gone), how upset he would be about Mom's new dog... Usually I hear a song, or see a building, or simply have a little musing about the morgue... anything at any time triggers all my memories, the good, the bad, the ugly, to come flooding back. Jon says its normal, I hope he is right.
Friday, August 10, 2007
iStuff
We interrupt your regularly scheduled broadcast of Taylor and Alivya Online to bring you the following tech news and opinions.
Honestly, sometimes I feel I should just start another blog since everyone here seems to be mainly interested in the kids. I can't really blame you, they are darn cute after all, and my wife is fairly active in other blogs dealing the preemies and multiples around the net, but feeling every time you post about something that intrests you immensely causes irritation is, well, irritating. Guess that's just my lot in life.
Anyways.
Earlier this week Apple announced some new upgrades to their hardware and software. New iMacs, iWork, and iLife. If there is one thing that annoys me about Apple is there obsession with the lower cased i in front of everything. Inside iLife is iPhoto, iWeb, iDVD, iMovie, all of which you can use with iTunes to put things on your iPod or iPhone. I have come to call my iPod an "Ip Od" out of spite. Despite this, however, the products themselves are interesting.
Software.
I hate iPhoto. Sorry Greg, I hate it. It takes over your photos and puts them where it wants them, not where I want them. The new iPhoto in iLife has a new feature called Events where it groups photos taken around the same time, more messing with my photos. At this point all I use iPhoto for is uploading pictures to Picasa and part of the process of making slide show DVDs, otherwise I do everything else in Lightroom.
iDVD has some new themes, which are nice, and I think iDVD is a great product for me currently as I can easily make good quality DVDs with it. iMovie is apparently completely rebuilt from the ground up, and I will have to see how this affects my ability to edit movies.
iWork has a new application in it. In addition to Pages (Word) and Keynote (PowerPoint) is a spreed sheet application called Numbers. I am very intrigued by this as it starts with a blank sheet to which you add tables, not a giant table already there like in Excell. Definitely the software I am most interested in.
Hardware.
The new iMacs are upgraded of course, and have a new keyboard and brushed metal look to them. iMacs have a problem with them, which Leo Laporte brought up on MacBreak Weekely, which I have to agree with. The bloody monitor is built into the computer. If you want to upgrade you have to get a whole new system, including a monitor. If I am going to do that I am just going to get a laptop. I have had the same CRT for the last 6 years, but have gone through several upgrades to my PC. I would have had to buy 3 iMacs in the same span, costing me extra for the monitor every time.
Finally, the announcement I am most interested in was barley mentioned. Upgraded Mac Minis. For $800 you can now get a Core 2 Duo 2.0 Ghz mini with 1gb of ram.
Why is that important?
Because 1080p H.264 requires those system specs. The new Mac Mini just became the best PVR on the market. It comes with a remote and DVI out, which can easily be converted to HDMI. It can do H.264 at 1080p, something the Apple TV cannot, and it comes with Front Row, a great media interface application, and also has a DVD drive. I could replace two boxes under my TV with something the size of a Wii. There is also built in Blue Tooth, and with a little extra free software you can get a Wiimote to work as a mouse on it. Easy sharing of content through iTunes from other computers. Now if they would only add a digital audio connection and a BluRay or HD-DVD drive. The price is still a bit steep at $800, but this gives me hope for a Apple TV that can do 1080p in the not to distant future.
We now return you to you regularly scheduled programing.
Honestly, sometimes I feel I should just start another blog since everyone here seems to be mainly interested in the kids. I can't really blame you, they are darn cute after all, and my wife is fairly active in other blogs dealing the preemies and multiples around the net, but feeling every time you post about something that intrests you immensely causes irritation is, well, irritating. Guess that's just my lot in life.
Anyways.
Earlier this week Apple announced some new upgrades to their hardware and software. New iMacs, iWork, and iLife. If there is one thing that annoys me about Apple is there obsession with the lower cased i in front of everything. Inside iLife is iPhoto, iWeb, iDVD, iMovie, all of which you can use with iTunes to put things on your iPod or iPhone. I have come to call my iPod an "Ip Od" out of spite. Despite this, however, the products themselves are interesting.
Software.
I hate iPhoto. Sorry Greg, I hate it. It takes over your photos and puts them where it wants them, not where I want them. The new iPhoto in iLife has a new feature called Events where it groups photos taken around the same time, more messing with my photos. At this point all I use iPhoto for is uploading pictures to Picasa and part of the process of making slide show DVDs, otherwise I do everything else in Lightroom.
iDVD has some new themes, which are nice, and I think iDVD is a great product for me currently as I can easily make good quality DVDs with it. iMovie is apparently completely rebuilt from the ground up, and I will have to see how this affects my ability to edit movies.
iWork has a new application in it. In addition to Pages (Word) and Keynote (PowerPoint) is a spreed sheet application called Numbers. I am very intrigued by this as it starts with a blank sheet to which you add tables, not a giant table already there like in Excell. Definitely the software I am most interested in.
Hardware.
The new iMacs are upgraded of course, and have a new keyboard and brushed metal look to them. iMacs have a problem with them, which Leo Laporte brought up on MacBreak Weekely, which I have to agree with. The bloody monitor is built into the computer. If you want to upgrade you have to get a whole new system, including a monitor. If I am going to do that I am just going to get a laptop. I have had the same CRT for the last 6 years, but have gone through several upgrades to my PC. I would have had to buy 3 iMacs in the same span, costing me extra for the monitor every time.
Finally, the announcement I am most interested in was barley mentioned. Upgraded Mac Minis. For $800 you can now get a Core 2 Duo 2.0 Ghz mini with 1gb of ram.
Why is that important?
Because 1080p H.264 requires those system specs. The new Mac Mini just became the best PVR on the market. It comes with a remote and DVI out, which can easily be converted to HDMI. It can do H.264 at 1080p, something the Apple TV cannot, and it comes with Front Row, a great media interface application, and also has a DVD drive. I could replace two boxes under my TV with something the size of a Wii. There is also built in Blue Tooth, and with a little extra free software you can get a Wiimote to work as a mouse on it. Easy sharing of content through iTunes from other computers. Now if they would only add a digital audio connection and a BluRay or HD-DVD drive. The price is still a bit steep at $800, but this gives me hope for a Apple TV that can do 1080p in the not to distant future.
We now return you to you regularly scheduled programing.
Tuesday, August 07, 2007
Tired again
I am sitting her this morning feeling a little bit depressed. "Why?" you ask. I started this morning like I have nearly every morning since Taylor's tube was changed last week Monday... cleaning up Taylor's vomit. I have already learned to detest the smell of PediaSure as much, if not more, than the smell of Similac infant formula. The loud gurgle stemming from somewhere deep within his digestive track signifies the fact that he is not yet finished. He wrenches and wrenches until every bit of irritating nutrients have left his little stomach. It sticks to his tiny patches of hair like oatmeal and hardens like glue in a few minutes. I hate this stuff.
The rest of the morning is followed by a bath, several more close calls, and at least one load of laundry. The carpet, the sheets, his clothes, the bumper, and all his stuffed friends are vomit soaked, everything needs to be cleaned.
Today I decide to eliminate the problem feeding, 6am to 8am, but in doing so, I risk weight loss. This feed accounts for 180 calories, slightly less than 1/5th of all his calories in a day. I decide to replace those calories by offering him 5 ounces of PediaSure in his cup throughout the day. He has never taken this much of anything, but I figure it is a wash. What is the difference if he throws up an entire feed each day, or I just don't give it to him? Either way, he does not get those calories. I sleep on the idea... for a few short hours.
I get up, still groggy since I had been up three times since I went to bed at 12:02am. Damn the day...
I pour five ounces of strawberry flavored PediaSure into a Nuby cup that I purchased yesterday. I know Taylor prefers to play with it more than drink from it, but what the hell, lets just see. Not surprisingly, he tips it upside down, smacks it around some, puts it in his mouth to chew on, but not to drink. I am defeated, but not ready to surrender. I get out the old cut out cup... this we have been using to offer liquids on and off since the kids were merely nine months old. Unfortunately thought, neither of them have taken to the cup. In fact, all they have learned to do is push it away.
So I pour an once or so of the Strawberry flavored PediaSure into the cup and attempt to bring it to Taylor's mouth... I am not surprised when he pushes the cup away and turns his head, but I am determined. The next time he whips his head away and flails his arms. I know he is unhappy, but all I want is one little sip! Getting more frustrated with every attempt, I finally quite being dainty with it. I swing the cup around hit is lips and tip quickly retreating. He gets a good swig, like a shot. He is shocked, but smacks his lips as he tastes strawberry for the first time. He calms down, and I decide he is ready for more. This time, however, he was ready for me. He flailed his left arm at just the right moment. Strawberry PediaSure is now in his hair, on his clothes, down the side of our bar counter and covering the floor and high chair. My last bead of patience has burst, and I throw the cup and remaining contents at the sink and cry...
My irrational subconscious takes over, and I decide that Taylor is never going to eat. He is never going to drink, his is going to be tube dependant for the rest of his life, as he has his whole life.
This morning, prior to this particular incident, I received a delivery from Taylor's DME supplier. They were supposed to be bringing him a back back. This was the relief from constantly following him around all day, that we have been waiting for all week. The man walks in the door, and I spot a large blue case just like the one I already have. My first gasket was blown. I think, given my rage, I was pretty calm with the man, however, my patience is wanning. I admit that I have a very limited supply. Why is it that none of these proffessionals seem to have any concept of what I need. How hard is it to understand that my child doesn't sit around waiting for food (that he apparently doesn't need)to pump into his belly. As far as he is concerned, he's a busy boy. One lady even suggested that I put mittens on his hands to keep him from pulling down the pump... um HELLO!! He is almost 2! I am so tired of hearing "I've never heard of such a thing"... my child can not be the only child in existance to have a feeding tube and move! I need to hit something... maybe I should take up boxing.
The rest of the morning is followed by a bath, several more close calls, and at least one load of laundry. The carpet, the sheets, his clothes, the bumper, and all his stuffed friends are vomit soaked, everything needs to be cleaned.
Today I decide to eliminate the problem feeding, 6am to 8am, but in doing so, I risk weight loss. This feed accounts for 180 calories, slightly less than 1/5th of all his calories in a day. I decide to replace those calories by offering him 5 ounces of PediaSure in his cup throughout the day. He has never taken this much of anything, but I figure it is a wash. What is the difference if he throws up an entire feed each day, or I just don't give it to him? Either way, he does not get those calories. I sleep on the idea... for a few short hours.
I get up, still groggy since I had been up three times since I went to bed at 12:02am. Damn the day...
I pour five ounces of strawberry flavored PediaSure into a Nuby cup that I purchased yesterday. I know Taylor prefers to play with it more than drink from it, but what the hell, lets just see. Not surprisingly, he tips it upside down, smacks it around some, puts it in his mouth to chew on, but not to drink. I am defeated, but not ready to surrender. I get out the old cut out cup... this we have been using to offer liquids on and off since the kids were merely nine months old. Unfortunately thought, neither of them have taken to the cup. In fact, all they have learned to do is push it away.
So I pour an once or so of the Strawberry flavored PediaSure into the cup and attempt to bring it to Taylor's mouth... I am not surprised when he pushes the cup away and turns his head, but I am determined. The next time he whips his head away and flails his arms. I know he is unhappy, but all I want is one little sip! Getting more frustrated with every attempt, I finally quite being dainty with it. I swing the cup around hit is lips and tip quickly retreating. He gets a good swig, like a shot. He is shocked, but smacks his lips as he tastes strawberry for the first time. He calms down, and I decide he is ready for more. This time, however, he was ready for me. He flailed his left arm at just the right moment. Strawberry PediaSure is now in his hair, on his clothes, down the side of our bar counter and covering the floor and high chair. My last bead of patience has burst, and I throw the cup and remaining contents at the sink and cry...
My irrational subconscious takes over, and I decide that Taylor is never going to eat. He is never going to drink, his is going to be tube dependant for the rest of his life, as he has his whole life.
This morning, prior to this particular incident, I received a delivery from Taylor's DME supplier. They were supposed to be bringing him a back back. This was the relief from constantly following him around all day, that we have been waiting for all week. The man walks in the door, and I spot a large blue case just like the one I already have. My first gasket was blown. I think, given my rage, I was pretty calm with the man, however, my patience is wanning. I admit that I have a very limited supply. Why is it that none of these proffessionals seem to have any concept of what I need. How hard is it to understand that my child doesn't sit around waiting for food (that he apparently doesn't need)to pump into his belly. As far as he is concerned, he's a busy boy. One lady even suggested that I put mittens on his hands to keep him from pulling down the pump... um HELLO!! He is almost 2! I am so tired of hearing "I've never heard of such a thing"... my child can not be the only child in existance to have a feeding tube and move! I need to hit something... maybe I should take up boxing.
Friday, August 03, 2007
Vomit
I don't remember if I posted anything about some of the issues that we have run into recently with regard to Taylor and his tube feedings, so please excuse my repetition if there is any... Since the beginning of July we have experienced increased difficulty with Taylor's tube feedings because he has become such a mobile entity. Prior to June, he litterally sat in one place until we moved him. Suddenly though, he learned to spin on his butt, and finally to scoot around on his butt all over the place. (As seen in the video post a few days ago) Anyway, the problems have included Taylor moving around in his crib and pulling out the tube, resulting in a bed of pediasure for him to sleep in... him rolling around in his crib at night, resulting in tubes wrapped tightly in some cases around his limbs and abdomen (this is the one that really terrified me)... him scooting around the room dragging his pump along behind him, resulting in the pump alarming as it has to be upright in order for it to actually pump.
It took almost two weeks for Taylor's GI doctor to address our concerns. It was finally decided that we would try to take out Taylor's J tube. I took him in on Monday morning and within five minutes the deed was done. As exciting as this is, it is also terrifying. You may recall the massive vomiting of every feed which lead us to placing the J tube in October of last year. There are few guarantees that he will tolerate total gastric feedings.
We were instructed to place Taylor on bolus (large) feedings of 6.5oz five times per day. This means that we must fit them all into the hours in which he is up, or wake him during the night to feed him... and this is one mommy who never wakes a sleeping baby! Therefore, we have elected to fit them into the day, with one feeding just before he wakes up in the morning, and just as he lays down for bed.
So far, things have been going well. He vomited the entire first feed on Monday following the change. We responded by slowing the feed to half the speed. Unfortunately, this means that he is fed for two hours with just an hour off in between almost all day long. He had a few spit ups during the rest of that day also. Since then, we have had only a few episodes, usually while he is receiving his morning feed. We hope to be able to wean him to a tolerance of gravity feeding again soon.
It took almost two weeks for Taylor's GI doctor to address our concerns. It was finally decided that we would try to take out Taylor's J tube. I took him in on Monday morning and within five minutes the deed was done. As exciting as this is, it is also terrifying. You may recall the massive vomiting of every feed which lead us to placing the J tube in October of last year. There are few guarantees that he will tolerate total gastric feedings.
We were instructed to place Taylor on bolus (large) feedings of 6.5oz five times per day. This means that we must fit them all into the hours in which he is up, or wake him during the night to feed him... and this is one mommy who never wakes a sleeping baby! Therefore, we have elected to fit them into the day, with one feeding just before he wakes up in the morning, and just as he lays down for bed.
So far, things have been going well. He vomited the entire first feed on Monday following the change. We responded by slowing the feed to half the speed. Unfortunately, this means that he is fed for two hours with just an hour off in between almost all day long. He had a few spit ups during the rest of that day also. Since then, we have had only a few episodes, usually while he is receiving his morning feed. We hope to be able to wean him to a tolerance of gravity feeding again soon.
Wednesday, August 01, 2007
Welcome Carson
Just wanted to Congratulate Tiffani and Shane, the proud new parents of Carson Michael, who was born last night, haha, July 31st, 2007, at 1143pm. Carson weighed 8lbs 2oz and gave his mommy such a difficult time that she ended up having major abdominal surgery. Those of you who know me well, know how I feel about Ceasarian Sections... Due to this complication, I was not able to obtain his length, but anyway you slice it, he is a big boy! After 17 hours of labor and a c-section, the new mommy was really too tired to worry about his stats! Mommy and baby are both well! Join me in wishing them the best on their new journey!
now I am going to bed.........
now I am going to bed.........
Monday, July 30, 2007
Friday, July 27, 2007
Random Thoughts
I picked up some extra hours at work this week, and this morning I was getting up to take my break when I looked over at my partner and said, "I am going to the potty, then I should be good." It wasn't until I was sitting there, on the potty, that I started thinking about when I actually started using the word "potty". Of the plethora of other terms I could have used, why potty?
Then it occured to me that I have not one, but two nearly two year old children at home. Duh, this might also explain my use of the terms bye bye, night night, and sleepy time. I wonder how many other baby terms I have subconsciously belittled my poor co-workers with in the past few months? Do my kids give me an excuse for this behavior, sort of a "get out of babytalk free" card? Do they even notice, or have I subconsciously demonstrated my that level of intelligence beams just over that of my two year olds?
Last night I was sitting there at the desk when the father of one of our patients came up and said, "I don't know if this applies, but if you are thinking about having kids... get a GOLDFISH!" He went on to describe how easily one could rid themselves of a Goldfish if it were to suddenly break it's ankle, or arm, sass, or just keel over dead. He supplemented this conversation by stating that he had three boys. My first instinct was to talk about Jon having three other brothers, instead I simply informed him that he was about 18 months too late! The rest of the night I had visions of my husband and his brothers swishing down the toilet with little unwanted Gold fish!
These are the conversations that occur in my head when I am forced (by employment) to sit at a desk for eight hours having relatively little to do.
Then it occured to me that I have not one, but two nearly two year old children at home. Duh, this might also explain my use of the terms bye bye, night night, and sleepy time. I wonder how many other baby terms I have subconsciously belittled my poor co-workers with in the past few months? Do my kids give me an excuse for this behavior, sort of a "get out of babytalk free" card? Do they even notice, or have I subconsciously demonstrated my that level of intelligence beams just over that of my two year olds?
Last night I was sitting there at the desk when the father of one of our patients came up and said, "I don't know if this applies, but if you are thinking about having kids... get a GOLDFISH!" He went on to describe how easily one could rid themselves of a Goldfish if it were to suddenly break it's ankle, or arm, sass, or just keel over dead. He supplemented this conversation by stating that he had three boys. My first instinct was to talk about Jon having three other brothers, instead I simply informed him that he was about 18 months too late! The rest of the night I had visions of my husband and his brothers swishing down the toilet with little unwanted Gold fish!
These are the conversations that occur in my head when I am forced (by employment) to sit at a desk for eight hours having relatively little to do.
Thursday, July 26, 2007
Unfinished business
Tonight, I finally decided to post some photos that I have been neglecting for a while...
First, June 30th, my Maid of Honor and friend for ages, married her college sweetheart. Jon and I were very lucky to have found some sitters for the kids, and enjoyed a whole evening kid free in celebration of this event! We would like to offer Jen and Peter the biggest CONGRATULATIONS on their big day.
We leave them to begin enjoying the sweet rewards of nuptial bliss by reminding them that WE WANT COUSINS :) (This goes for the many other couples whose weddings we have attended in the past year... you know who you are!)
We celebrated our country's Independence by trapping our poor children in their car seats for a long two hour trek to the great North Woods. We spent the evening at the cottage that now belongs to Jon's sister-in-law's family. The kids went to bed after a long day of scooting, crawling (not walking, sorry George), playing, boating, entertaining, and avoiding the black one (my brother-in-law's black lab, Casey). We watched fireworks and relaxed.
Oh so difficult to choose which ones to post! Click on the link below the next picture to see all the photos!
Jon and I decided to purchase some new equipment for our camera, so we've been spending a lot of time getting to know it. These are mostly Jon's photos, but are some of my favorites:
Sorry George, again... I think she looks like you in this one!
We also attended the wedding of Jon's cousin Amy in Chicago on July 14th. Unfortunately the kids didn't fare so well with the four hour plus car ride, the noise, heat, and excitement, so we had to leave early. Also Daddy made a crucial operating error on the camera, so I don't have any photos of the blushing brides, but we would like to CONGRATULATE Amy and Linda!
These are a couple of shots that did turn out, and a couple that we got from Greg and Sonja!
Last week I spent an evening giving tours of the Grignon Mansion... which I have not done in many years... but Jon and the kids met me afterwards. Here are a few different photos than what Jon posted on our other blog:
Yes, that is Taylor eating grass...
I wonder who dug it up for him???!!!
In all of our spare time, we are just finishing up the process of digitally archiving my family's photos. I also painted the formal living room, and we are sanding and staining the trim and base boards to match the new wood floor that we will be installing next weekend. See... nothing going on!!! ;)
First, June 30th, my Maid of Honor and friend for ages, married her college sweetheart. Jon and I were very lucky to have found some sitters for the kids, and enjoyed a whole evening kid free in celebration of this event! We would like to offer Jen and Peter the biggest CONGRATULATIONS on their big day.
We leave them to begin enjoying the sweet rewards of nuptial bliss by reminding them that WE WANT COUSINS :) (This goes for the many other couples whose weddings we have attended in the past year... you know who you are!)
We celebrated our country's Independence by trapping our poor children in their car seats for a long two hour trek to the great North Woods. We spent the evening at the cottage that now belongs to Jon's sister-in-law's family. The kids went to bed after a long day of scooting, crawling (not walking, sorry George), playing, boating, entertaining, and avoiding the black one (my brother-in-law's black lab, Casey). We watched fireworks and relaxed.
Oh so difficult to choose which ones to post! Click on the link below the next picture to see all the photos!
Jon and I decided to purchase some new equipment for our camera, so we've been spending a lot of time getting to know it. These are mostly Jon's photos, but are some of my favorites:
 |
| From 2007 Twins |
Sorry George, again... I think she looks like you in this one!
We also attended the wedding of Jon's cousin Amy in Chicago on July 14th. Unfortunately the kids didn't fare so well with the four hour plus car ride, the noise, heat, and excitement, so we had to leave early. Also Daddy made a crucial operating error on the camera, so I don't have any photos of the blushing brides, but we would like to CONGRATULATE Amy and Linda!
These are a couple of shots that did turn out, and a couple that we got from Greg and Sonja!
Last week I spent an evening giving tours of the Grignon Mansion... which I have not done in many years... but Jon and the kids met me afterwards. Here are a few different photos than what Jon posted on our other blog:
Yes, that is Taylor eating grass...
I wonder who dug it up for him???!!!
In all of our spare time, we are just finishing up the process of digitally archiving my family's photos. I also painted the formal living room, and we are sanding and staining the trim and base boards to match the new wood floor that we will be installing next weekend. See... nothing going on!!! ;)
Monday, July 23, 2007
Cliffs again
This morning Taylor had a visit with his physical therapist and his early education interventionist... or that is the best title I have come up with to describe her. Anyway, we got to talking about our up coming bid to re certify Taylor for the Katie Becket program. This program is designed to help families like ours deal with the financial and physical burdens of having a child with significant disabilities. Every year the child needs to go through the process of re certification in which they must prove a significant enough disability to satisfy the requirements of the program. They look at everything pertaining to his medical status. I have just about completed over eight pages of "Describe how your child x" type of questions. I have filled out medical release forms for all of Taylor's specialists... his pulmonologist, Ear-Nose-Throat, Gastroenterologist, Pediatric Ophthalmologist, Pediatrician, Physical therapist, Occupational therapies, Speech Therapist, Dietitian, Early interventionist, and Physiatrist... yes this whole team is really just for Taylor.
Anyway, I have been talking with his therapists about their summaries for the recert. process. Basically, I have asked them to help us with this process by placing a particular emphasis on what Taylor really needs to work on yet. Why? Well after seeing how many specialists Taylor has, it may be hard to believe, but on paper, he looks super healthy... compared to last year anyway. Our conversation eventually (naturally) lead to a description about what age are Taylor's abilities falling into. I have not received this type of info since I decided not to bring him back for NICU follow ups in January. I estimated that he was at least six months delayed... based on my vast knowledge of the subject...sarcasm... So his PT offered up a suggestion this morning that she could argue for 10 months. She also pointed out several ways in which he remains significantly delayed for speech and language, and well eating... For the purposes of Katie Becket, this is very good news. Hopefully they can all write summaries of Taylor that are as convincing of his need as I was today. Personally though, I had never put Taylor eight months delayed. She also pointed out that preemies are generally expected during this stage of the game to be somewhere ahead of their adjusted age, yet behind their real age, which gets closer and closer as they approach the age of two... doesn't give Taylor much time to catch up. (Although, at the rate he has been going, I still have hope!)
In addition to all this good news, I learned that Mary, the interventionist, has been thinking about re-evaluating Alivya... not because she thinks Livi is ready to be off the program (which they gave me the option of doing about six months ago) but because essentially, they think that her skills are slipping. Lisa, Taylor's PT, has been watching her gross skills since she started thinking about crawling. She is just now starting to think that she might need some extra help. (Although in all fairness, she has been doing a little work with her at each of Taylor's sessions for a long time). Mary also thinks that she not progressing as well with speech as she should be. Having only two solid words, three at a stretch, they think she may benefit from some therapy there too. Lastly, I have been asking about her defensiveness to touch for some time. I actually had her re-evaled in the spring, but it was determined that her delay was not significant enough for actual services. So I guess I am supposed to sit by here while her skills dwindle until she absolutely needs service, then I can fight for two battles with Katie Becket.
I guess today was a hidden rocky cliff on the path that I thought looked pretty grassy and down hill.
Anyway, I have been talking with his therapists about their summaries for the recert. process. Basically, I have asked them to help us with this process by placing a particular emphasis on what Taylor really needs to work on yet. Why? Well after seeing how many specialists Taylor has, it may be hard to believe, but on paper, he looks super healthy... compared to last year anyway. Our conversation eventually (naturally) lead to a description about what age are Taylor's abilities falling into. I have not received this type of info since I decided not to bring him back for NICU follow ups in January. I estimated that he was at least six months delayed... based on my vast knowledge of the subject...sarcasm... So his PT offered up a suggestion this morning that she could argue for 10 months. She also pointed out several ways in which he remains significantly delayed for speech and language, and well eating... For the purposes of Katie Becket, this is very good news. Hopefully they can all write summaries of Taylor that are as convincing of his need as I was today. Personally though, I had never put Taylor eight months delayed. She also pointed out that preemies are generally expected during this stage of the game to be somewhere ahead of their adjusted age, yet behind their real age, which gets closer and closer as they approach the age of two... doesn't give Taylor much time to catch up. (Although, at the rate he has been going, I still have hope!)
In addition to all this good news, I learned that Mary, the interventionist, has been thinking about re-evaluating Alivya... not because she thinks Livi is ready to be off the program (which they gave me the option of doing about six months ago) but because essentially, they think that her skills are slipping. Lisa, Taylor's PT, has been watching her gross skills since she started thinking about crawling. She is just now starting to think that she might need some extra help. (Although in all fairness, she has been doing a little work with her at each of Taylor's sessions for a long time). Mary also thinks that she not progressing as well with speech as she should be. Having only two solid words, three at a stretch, they think she may benefit from some therapy there too. Lastly, I have been asking about her defensiveness to touch for some time. I actually had her re-evaled in the spring, but it was determined that her delay was not significant enough for actual services. So I guess I am supposed to sit by here while her skills dwindle until she absolutely needs service, then I can fight for two battles with Katie Becket.
I guess today was a hidden rocky cliff on the path that I thought looked pretty grassy and down hill.
Tuesday, July 17, 2007
What's in a name...
So I have decided to change my user name from Zaphod to Jonathan. The more that my online life connects to other aspects of my physical life (career, family) the more I find it sort of silly to use a screen name for everything. Especially J&J Studios starting up I find it more important to merge the two identities together.
The name Zaphod first came from a radio series that my family listened to on a trip to Chicago. It was the BBC's The Hitchhikers Guide to the Galaxy. Zaphod Beeblebrox was a character with two heads, three arms, and president of the galaxy. The series, which was then written into a book, then produced as a TV series, has just recently been made into a movie, and a good one at that. They changed some of the plot, as they always do, but the soul of the original is still there. The author, Douglas Adams, passed away in 2001.
I picked the name to use as a screen name when me and my friends started playing computer games on LAN networks. It sounded cool and I have stuck with since. I will probably still use it while gaming, and as user names for websites where it is just used to log on.
Don't Panic.
The name Zaphod first came from a radio series that my family listened to on a trip to Chicago. It was the BBC's The Hitchhikers Guide to the Galaxy. Zaphod Beeblebrox was a character with two heads, three arms, and president of the galaxy. The series, which was then written into a book, then produced as a TV series, has just recently been made into a movie, and a good one at that. They changed some of the plot, as they always do, but the soul of the original is still there. The author, Douglas Adams, passed away in 2001.
I picked the name to use as a screen name when me and my friends started playing computer games on LAN networks. It sounded cool and I have stuck with since. I will probably still use it while gaming, and as user names for websites where it is just used to log on.
Don't Panic.
Monday, July 16, 2007
Mr Fix-it
So we attended yet another wedding this past weekend, where I was informed that my brother-in-law "fixed my baby"... hehehe... So I thought this might be a fun way to get all of you lurkers involved... Several posts ago, there is one entitled "Organic Carrots" Read the post, and then decide if my brother-in-law "fixed" the baby, or if it was Organic Carrots that "fixed" by baby! Post your vote in the comments! I am going to be really sad if no one votes... cause I know you are all out there... Jen... it only takes 5 seconds, well 10 if you can't get that stupid letter thing right (which I always seem to mess up the first try)... Tanya... See, we know that you are there! VOTE, VOTE, VOTE!!!! :) Thank you!
Friday, July 13, 2007
Fancy...
I don't know how many of you follow our other site, J&J Studios, but we have some news. Our first projects have been going well. Our photo DVDs have been well received by family and friends, and our first two photo shoots/ graphic design projects are both finished. It is amazing how much you learn from one session. Our second Hot Shot product is way better than our first, and it appears to be going over really well at the race tracks according to our clients. Hopefully that will mean business.
We needed new business cards as our fist ones have run out and I decided that jnjstudios.blogspot.com just seemed a little to amateur. So, I can now announce that the official location of our online site is
www.jandj-studios.com.
If you use the old address it should still work as Google still hosts it.
It feels so... proper to have a .com name. Kind of like the first time I saw our logo on the race car. It's all very exciting and surreal at the same time. Now if we could only make some money!
We needed new business cards as our fist ones have run out and I decided that jnjstudios.blogspot.com just seemed a little to amateur. So, I can now announce that the official location of our online site is
www.jandj-studios.com.
If you use the old address it should still work as Google still hosts it.
It feels so... proper to have a .com name. Kind of like the first time I saw our logo on the race car. It's all very exciting and surreal at the same time. Now if we could only make some money!
Thursday, July 12, 2007
Well here is one of them...
I finally got Taylor eating up. Having some problems with his scooting video. Damn complicated camera.
Friday, July 06, 2007
Organic Carrots
Over this past weekend (edited: June 30/July1st), Taylor stayed home with his care taker while Livi spent a night with her aunt, and Jon and I went to a wedding in Illinois. By the time we got home, he had learned some interesting new tricks!!!
Before we left for sunny California last May, we asked Jon's brother to pick up a few things that we would need for the kids while we were there. One of the things we asked him to pick up was baby food for Livi and Taylor. I am not sure if he was overwhelmed by the baby food isle, or if he just believes that babies (or maybe just our babies) need to eat organic... but one of the things he bought was organic carrots. He bought way more than we needed for the trip, so we just got to trying them with Taylor. Tanya started giving him these carrots while we were gone, and on Monday morning while she was feeding him, I got it on video....
[insert video clip that I asked Daddy to upload over a week ago]
Yup, that is my Taylor opening his mouth for... FOOD!!!! We don't know if it was organic carrots, but something has changed!
Here is another little trick he learned by the time we got back....
[Insert second video clip that I asked Daddy to upload about a week ago of Taylor scooting forward to his therapist....]
He has been scooting around in a circle for about a month, but over night he suddenly realized how useful it might be to scoot forward!!! Now he cruises all over the living room chasing his sister.... oh how the game has changed!!! Livi is quickly learning that its not really fun when somebody takes the toy she was playing with.
We are just so stoked that he has started doing all of these things.
Edited: I really wanted to share the video, my words do not do these accomplishments justice, however, I have given up on Jon... and I have not learned yet how to get video up by myself... Sorry! :(
Before we left for sunny California last May, we asked Jon's brother to pick up a few things that we would need for the kids while we were there. One of the things we asked him to pick up was baby food for Livi and Taylor. I am not sure if he was overwhelmed by the baby food isle, or if he just believes that babies (or maybe just our babies) need to eat organic... but one of the things he bought was organic carrots. He bought way more than we needed for the trip, so we just got to trying them with Taylor. Tanya started giving him these carrots while we were gone, and on Monday morning while she was feeding him, I got it on video....
[insert video clip that I asked Daddy to upload over a week ago]
Yup, that is my Taylor opening his mouth for... FOOD!!!! We don't know if it was organic carrots, but something has changed!
Here is another little trick he learned by the time we got back....
[Insert second video clip that I asked Daddy to upload about a week ago of Taylor scooting forward to his therapist....]
He has been scooting around in a circle for about a month, but over night he suddenly realized how useful it might be to scoot forward!!! Now he cruises all over the living room chasing his sister.... oh how the game has changed!!! Livi is quickly learning that its not really fun when somebody takes the toy she was playing with.
We are just so stoked that he has started doing all of these things.
Edited: I really wanted to share the video, my words do not do these accomplishments justice, however, I have given up on Jon... and I have not learned yet how to get video up by myself... Sorry! :(
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