Eli was discharged from the hospital yesterday afternoon. They are unsure of why he has a fever. He will go to the doc tomorrow to have his labs redrawn to make sure nothing has changed.
Bob worked 14 hrs yesterday and another 14 today so he has the van and the kids and I are just hanging out. Mr eli is fussy and the oldest 4 are bored and hyper. Fun times.
More updates tomorrow hopefully.
Monday, June 28, 2010
Sunday, June 27, 2010
Hospital for Mr E.
Yesterday Eli started running a fever and getting pretty cranky. Called the doc and they had us bring him up to the ER. Chest xrays, lab work, urine catch, admission, etc. Right now all we know is his white count is elevated but we don't know why. Waiting on the doc to round this morning so we can find out what is next.
The garage sale went pretty decent. Got rid of some stuff, and made a bit of money. It was a super hot 2 days!
Bob is at work today and tomorrow, gone a total of 14 hrs each day. He also worked both of his days off again. Puts him at 104hrs these last 2 weeks, with no days off. The hours suck but right now we don't have many options. I called Brian last week and let him know that he was going to have to start paying child support or I was going to have to drop the 4 kids off with him and have him support them until we can catch back up financially. Hoping to hear something back from him soon. But we aren't making it financially and he has GOT to help support his 4 children.
Other than that not much new around here. Will update when we know more.
The garage sale went pretty decent. Got rid of some stuff, and made a bit of money. It was a super hot 2 days!
Bob is at work today and tomorrow, gone a total of 14 hrs each day. He also worked both of his days off again. Puts him at 104hrs these last 2 weeks, with no days off. The hours suck but right now we don't have many options. I called Brian last week and let him know that he was going to have to start paying child support or I was going to have to drop the 4 kids off with him and have him support them until we can catch back up financially. Hoping to hear something back from him soon. But we aren't making it financially and he has GOT to help support his 4 children.
Other than that not much new around here. Will update when we know more.
Wednesday, June 23, 2010
Quick Check In
It's been a busy few days.
Yesterday Eli had his appt with the GI doc. She says there are a few tests that could be run, but they are dangerous and she doesn't think they will be worth it. So she wants us to wait till his appt in KC with the motility specialist. So we wait. She did say that I could pump, completely, and then allow Eli to "dry nurse" so he can have that comfort of sucking at the breast. He gets a few drops of milk but nothing major. This time allows him that comfort, and it is nice for me as well. So we are doing this a few times a day. Tomorrow Eli has PT, and a phone check in with the dietitian.
The older 3 have been busy this week with VBS. Ben has enjoyed it and done well. Ari has been having some quiet time by herself without her older 4 siblings and she has really seemed to enjoy it. She is completely potty trained now and is using the potty on her own, and sleeping in underwear as well. She's super excited about this.
Bob's working his regular hours this week as there was no OT available. I'm getting ready for the garage sale this weekend. I also colored my hair today. I'll get pics up soon.
Will update more soon!
Yesterday Eli had his appt with the GI doc. She says there are a few tests that could be run, but they are dangerous and she doesn't think they will be worth it. So she wants us to wait till his appt in KC with the motility specialist. So we wait. She did say that I could pump, completely, and then allow Eli to "dry nurse" so he can have that comfort of sucking at the breast. He gets a few drops of milk but nothing major. This time allows him that comfort, and it is nice for me as well. So we are doing this a few times a day. Tomorrow Eli has PT, and a phone check in with the dietitian.
The older 3 have been busy this week with VBS. Ben has enjoyed it and done well. Ari has been having some quiet time by herself without her older 4 siblings and she has really seemed to enjoy it. She is completely potty trained now and is using the potty on her own, and sleeping in underwear as well. She's super excited about this.
Bob's working his regular hours this week as there was no OT available. I'm getting ready for the garage sale this weekend. I also colored my hair today. I'll get pics up soon.
Will update more soon!
Monday, June 21, 2010
Phone Calls Galore
I've spent the entire day on the phone. At multiple times today I have had a phone on both ear. I've gotten a few things figured out and so many things left. Eli meet with our local GI doc tomorrow to officially transfer his care to the GI doc in KC. I called KC to get him schedualed and at first they only had an appt the middle of August. She called me back 2 hrs later and said they had a cancellation and that they could get him in July 7th. So I'm rushing to get all of his medical records and testing sent up there ASAP. I've been on the phone with the pediatrician 3 times today, the pulmonologist twice, the neurologist once, the surgeon 3 times, the motility specialist 4 times, and medical supply twice. Oh and PT twice, and medical records twice. I've also pumped 6 times, ran 4 tube feeds, pushed 1 bolus feed, did Ben's respite paperwork with his 2 workers, changed countless diapers, broken up multiple fights, fed the other kids twice, done 2 loads of laundry, ran to target, took bob to work, enrolled and took the kids to VBS, orientated a new nurse, and I ate lunch(sorta). Somewhere in there I also spoke with my doc, who has called me out another new prescription. My head is now hurting so much that if I look to the right or bend down I have a horrible shooting pain from the back of my head into my right ear/temple/and upper jaw. She's not sure what's going on. Our pharmacy just delivered the new script so hopefully it works.
I'm exhausted. Very exhausted. Bob is gone another 14 hrs today, as he was able to pick up an extra 2 hrs of OT.
The older kids all had VBS today leaving only Ari, Eli, and I home. They had a good time and are super excited to be going again tomorrow! They have spent a bit of time outside, but mostly indoors these last few days as it's been so darned warm! Eli is fussy as could be, he's missing nursing and doesn't understand. His mouth is sooo dry and his lips are cracked and chapped.
Tomorrow we have VBS, Eli's GI appt, Ben's BASIS re-evaluation, and tons of paperwork and phone calls for our next trip to KC.
Will update sometime tomorrow when I get a free moment!
I'm exhausted. Very exhausted. Bob is gone another 14 hrs today, as he was able to pick up an extra 2 hrs of OT.
The older kids all had VBS today leaving only Ari, Eli, and I home. They had a good time and are super excited to be going again tomorrow! They have spent a bit of time outside, but mostly indoors these last few days as it's been so darned warm! Eli is fussy as could be, he's missing nursing and doesn't understand. His mouth is sooo dry and his lips are cracked and chapped.
Tomorrow we have VBS, Eli's GI appt, Ben's BASIS re-evaluation, and tons of paperwork and phone calls for our next trip to KC.
Will update sometime tomorrow when I get a free moment!
Sunday, June 20, 2010
Time is Blurring By
Time is just kind of slipping by. Bob has been working OT, because we are horribly in need of the money. So he's been gone from sun up, way past sun down. So it's pretty much been me, trying to figure it out. The 1 day Bob was off we spent getting the garage organized for a garage sale. Friday evening Bob and I went to a concert, Boyz 2 Men. (we were only able to do this because of some AMAZING people that we are soooo lucky to have in our lives.) It was amazing. Brought a peace to my soul, and took me back 20 years! Absolutely loved it!!!!
Other than that it's been phone calls, doctor check-in's etc. There was a very brief splash of hope thrown in on Thursday, late evening. The surgeon thought there was a slight possibility that she could stretch the esaphagus with surgery. She read the report, and checked the films. She can't. It's for sure the muscles and motility. I wish she had looked and confirmed before even mentioning a glimmer of hope.
So we are back at the beginning. The doctors are all doing who knows what and I'm left here with my son. He cries, he's frantic, his little mouth is constantly moving like when he's nursing. Everytime I come in, or he hears my voice, or I hold him, he goes frantic. 6 1/2 months later he doesn't understand why I won't nurse him. I'm pumping and pumping but I'm hardly getting anything. I expected the opposite. I figured without being able to nurse that my pumping supply would increase. Not so, at this rate it'll be gone in a week, and I have no clue what to do. Every 3 hours I spend a little over 2 hrs taking care of Eli's feeds and my pumping. Eli's feeds take about 1 hr and 25 minutes from set up, feed, and then clean up. Pumping takes about 45 minutes from set up, pumping, and clean up. So that's 2 hrs and 10 minutes. That doesn't count diaper changes, GT care, etc... And figure in there at some point I need to go to the bathroom sometimes, eat, drink, or what not. And oh yeah I still have 4 other children here at home. Hmmm. This is all done on a 3 hr cycle all day, with Eli crying most of it because he wants to nurse.
i just don't know anymore.....
Everyone else in the house is pretty good. The older 4 are doing well. Busy outside most days, or playing games, or goofing off downstairs. Ari is completely potty trained and it's heavenly!
Bob is busy. He's working as many extra hours of OT as possible. We are so behind on everything. The car situation has really screwed us over financially, and with having to support 10 people, we can't keep up. My ex, as you all know is still refusing to pay a penny to help support his children. Last time I asked for some child support so I could afford food to feed the kids, he informed me I was a bitch and didn't need his money, and that he was going to call SRS saying that I was denying the kids food.
It's a rough spot to be, and we are struggling to figure out how to get thru.
I have no idea right now what this week will bring, but I will update as I know more.
Like always I will respond as quickly as possible, but life is busy, and honestly I'm really depressed and sometimes talking to others just takes to much energy. Company is always nice. It gets lonely here. Feel free to simply call or text before heading over. No promises of my hair being all pretty, and makeup being done, BUT I will willingly welcome you in! Some of you can verify that these last few weeks! :)
much love and thanks to all!
Other than that it's been phone calls, doctor check-in's etc. There was a very brief splash of hope thrown in on Thursday, late evening. The surgeon thought there was a slight possibility that she could stretch the esaphagus with surgery. She read the report, and checked the films. She can't. It's for sure the muscles and motility. I wish she had looked and confirmed before even mentioning a glimmer of hope.
So we are back at the beginning. The doctors are all doing who knows what and I'm left here with my son. He cries, he's frantic, his little mouth is constantly moving like when he's nursing. Everytime I come in, or he hears my voice, or I hold him, he goes frantic. 6 1/2 months later he doesn't understand why I won't nurse him. I'm pumping and pumping but I'm hardly getting anything. I expected the opposite. I figured without being able to nurse that my pumping supply would increase. Not so, at this rate it'll be gone in a week, and I have no clue what to do. Every 3 hours I spend a little over 2 hrs taking care of Eli's feeds and my pumping. Eli's feeds take about 1 hr and 25 minutes from set up, feed, and then clean up. Pumping takes about 45 minutes from set up, pumping, and clean up. So that's 2 hrs and 10 minutes. That doesn't count diaper changes, GT care, etc... And figure in there at some point I need to go to the bathroom sometimes, eat, drink, or what not. And oh yeah I still have 4 other children here at home. Hmmm. This is all done on a 3 hr cycle all day, with Eli crying most of it because he wants to nurse.
i just don't know anymore.....
Everyone else in the house is pretty good. The older 4 are doing well. Busy outside most days, or playing games, or goofing off downstairs. Ari is completely potty trained and it's heavenly!
Bob is busy. He's working as many extra hours of OT as possible. We are so behind on everything. The car situation has really screwed us over financially, and with having to support 10 people, we can't keep up. My ex, as you all know is still refusing to pay a penny to help support his children. Last time I asked for some child support so I could afford food to feed the kids, he informed me I was a bitch and didn't need his money, and that he was going to call SRS saying that I was denying the kids food.
It's a rough spot to be, and we are struggling to figure out how to get thru.
I have no idea right now what this week will bring, but I will update as I know more.
Like always I will respond as quickly as possible, but life is busy, and honestly I'm really depressed and sometimes talking to others just takes to much energy. Company is always nice. It gets lonely here. Feel free to simply call or text before heading over. No promises of my hair being all pretty, and makeup being done, BUT I will willingly welcome you in! Some of you can verify that these last few weeks! :)
much love and thanks to all!
Friday, June 18, 2010
The Jumbled Details
*no promises that this all flows. It's all still a strange clouded nightmare in my head"
As I posted before Tuesday was Eli's swallow study. The lady in charge was in a bad mood and screwed up the test. I was torn between what to do. Part of me said she's the medical professional and ultimately knows what she's talking about, and part of me said I knew she did it wrong and that I should push. With some advice from nurses and friends, and my own gut instinct I pushed. I called the surgeon. She called the hospital. I spoke directly to the head of radiology, and to the speech path multiple times on Wednesday. I was told how radiation COULD harm my child, and how the lady who ran the test was AMAZING, yada yada yada. I was also told I COULD have the test redone free of charge if that's what I really wanted. I spoke with the speech path who was there for the testing and she suggested rerunning correctly. So I chose to have that done.
It was schedualed for Thursday morning. Eli and I got to the hospital and I was told repeatedly about how the results were accurate from Tuesday, and how radiation COULD harm my child MAYBE. I was told all these credentials of how amazing the radiology doc was and basically how I knew nothing. I told her repeatedly the test was wrong, my child is constantly getting fluid in his lungs and has pneumonia every 6ish weeks and that this kind of wear and tear on the lungs was GUARANTEED a bad thing. I know my son and I know this process. So against my will she began the test.
The tests was set up exactly as I requested, the correct way a swallow study was supposed to be run. The speech path was there and her suggested were listened to as well. Within a few swallows the mood of the rooom changed, and magically from thin air more people came flooding in to hover over the screen. Right there in front of everyone's eyes was a problem, a BIG one.
The aspirating was not in the swallow. He was swallowing beautifully. The problem is in the esophagus. The muscles along it aren't working like they are supposed to. It's called a motility problem. The food is stacking up at the top of the stomach and then after 8 to 10 swallows it's got nowhere to go because it isn't draining into the stomach fast enough and obviously he has to breath. So he takes a breathe and the food overflows into the lungs. Food is supposed to go down the throat, down the esophagus, and immediately empty into the stomach. This is done by muscles along the way. His aren't working properly. You can't make them work properly. No range of motion, no exercises, no meds, no surgeries, no practice, no nothing. These are muscles that we don't have 1 single drop of control over.
So the rush was on. Doctors were called, orders were written, faxed, verbally given over the phone. Doctors picked whose in charge, who will take each piece of the puzzle. The GI doc gets the esophagus itself, the neurologist gets the nerves and muscles, the surgeon gets the feeds and the gtube, and a brand new specialist who will be immediately added gets the motility issue itself. There is only 1 motility specialist and he is of course in Kansas City. Everything will be put together and Eli's care will be transferred to him.
In the mean time Eli is NPO. This means NOTHING by mouth. No nursing, no foods, no meds, no bottles, no NOTHING. The last normal thing about my son has ended. I can't hold my son and have that time. That non-medical time. It's all cold and sterile and medical and I hate it. I want my baby. I smell of milk. He has had the comfort and nurishment for the last 6 1/2 months and in 1 hr it was all taken away from Eli and I.
As I got into the van in the parking garage after his test I lost it and broke down in tears. I called a friend and they talk me thru leaving the parking garage. Within an hour or so a knock was at my door, and my household was taken over by an amazing friend. I laid in my room, sleeping and crying. I was pushed to go to my knitting last night and I did, mostly I was "there".
It's all a blur. I'm angry, I'm sad, I'm scared, I'm just done. I feel as though I'm being buried alive in a glass box and I can see everything but I can't do a damn thing about it.
My tiny little man cries and there is nothing I can do to make it better for him, or for myself for that matter. I don't know what happens now, what happens next. I have no idea. Right now I'm just trying to make it thru each hour.
If it wasn't for the amazing friends and family and nurses and doctors in our life I have no idea how I would be doing this at all.
I have but 1 request. Please don't tell me how strong I am, please don't tell me I'm a super mom. Please just tell me it's ok to be scared, and it's ok to be weak right now, and it's ok to lean HARD on the strong people around me. Right now I need someone else to be strong and super, because I can't do it.
And to the knock on my door, THANK YOU. You have been the rock, and without you.... There are no words to say how thankful my family is for you and your family. SMOOOOCHES! :)
As I posted before Tuesday was Eli's swallow study. The lady in charge was in a bad mood and screwed up the test. I was torn between what to do. Part of me said she's the medical professional and ultimately knows what she's talking about, and part of me said I knew she did it wrong and that I should push. With some advice from nurses and friends, and my own gut instinct I pushed. I called the surgeon. She called the hospital. I spoke directly to the head of radiology, and to the speech path multiple times on Wednesday. I was told how radiation COULD harm my child, and how the lady who ran the test was AMAZING, yada yada yada. I was also told I COULD have the test redone free of charge if that's what I really wanted. I spoke with the speech path who was there for the testing and she suggested rerunning correctly. So I chose to have that done.
It was schedualed for Thursday morning. Eli and I got to the hospital and I was told repeatedly about how the results were accurate from Tuesday, and how radiation COULD harm my child MAYBE. I was told all these credentials of how amazing the radiology doc was and basically how I knew nothing. I told her repeatedly the test was wrong, my child is constantly getting fluid in his lungs and has pneumonia every 6ish weeks and that this kind of wear and tear on the lungs was GUARANTEED a bad thing. I know my son and I know this process. So against my will she began the test.
The tests was set up exactly as I requested, the correct way a swallow study was supposed to be run. The speech path was there and her suggested were listened to as well. Within a few swallows the mood of the rooom changed, and magically from thin air more people came flooding in to hover over the screen. Right there in front of everyone's eyes was a problem, a BIG one.
The aspirating was not in the swallow. He was swallowing beautifully. The problem is in the esophagus. The muscles along it aren't working like they are supposed to. It's called a motility problem. The food is stacking up at the top of the stomach and then after 8 to 10 swallows it's got nowhere to go because it isn't draining into the stomach fast enough and obviously he has to breath. So he takes a breathe and the food overflows into the lungs. Food is supposed to go down the throat, down the esophagus, and immediately empty into the stomach. This is done by muscles along the way. His aren't working properly. You can't make them work properly. No range of motion, no exercises, no meds, no surgeries, no practice, no nothing. These are muscles that we don't have 1 single drop of control over.
So the rush was on. Doctors were called, orders were written, faxed, verbally given over the phone. Doctors picked whose in charge, who will take each piece of the puzzle. The GI doc gets the esophagus itself, the neurologist gets the nerves and muscles, the surgeon gets the feeds and the gtube, and a brand new specialist who will be immediately added gets the motility issue itself. There is only 1 motility specialist and he is of course in Kansas City. Everything will be put together and Eli's care will be transferred to him.
In the mean time Eli is NPO. This means NOTHING by mouth. No nursing, no foods, no meds, no bottles, no NOTHING. The last normal thing about my son has ended. I can't hold my son and have that time. That non-medical time. It's all cold and sterile and medical and I hate it. I want my baby. I smell of milk. He has had the comfort and nurishment for the last 6 1/2 months and in 1 hr it was all taken away from Eli and I.
As I got into the van in the parking garage after his test I lost it and broke down in tears. I called a friend and they talk me thru leaving the parking garage. Within an hour or so a knock was at my door, and my household was taken over by an amazing friend. I laid in my room, sleeping and crying. I was pushed to go to my knitting last night and I did, mostly I was "there".
It's all a blur. I'm angry, I'm sad, I'm scared, I'm just done. I feel as though I'm being buried alive in a glass box and I can see everything but I can't do a damn thing about it.
My tiny little man cries and there is nothing I can do to make it better for him, or for myself for that matter. I don't know what happens now, what happens next. I have no idea. Right now I'm just trying to make it thru each hour.
If it wasn't for the amazing friends and family and nurses and doctors in our life I have no idea how I would be doing this at all.
I have but 1 request. Please don't tell me how strong I am, please don't tell me I'm a super mom. Please just tell me it's ok to be scared, and it's ok to be weak right now, and it's ok to lean HARD on the strong people around me. Right now I need someone else to be strong and super, because I can't do it.
And to the knock on my door, THANK YOU. You have been the rock, and without you.... There are no words to say how thankful my family is for you and your family. SMOOOOCHES! :)
Thursday, June 17, 2010
thursday "update"
quick response to texts/emails/calls. Eli's tests were today. It wasn't good. Different than what they had expected. He is NPO indefinitely. I'm not dealing with this well right now and am really struggling. The reality of everything has hit me like a ton of bricks this time and i'm really struggling to keep it together. i promise to get back to everyone at some point, but right now i can't do it.
Tuesday, June 15, 2010
Tuesday update
This morning was Eli's swallow study and it was a mess. The lady "in charge" was grouchy and on a power trip and wasn't listening to anyone in the room. We ended up with 7 people in the room, PLUS bob, eli and I. Finally the speech pathologist got so annoyed she just stepped back and let MS. In charge do her own thing. We ended up leaving with no information and the test has been reschedualed at our normal hospital on Thursday. We check in at 7:30am. So we'll be back in familiar territory with our team. This is how it should have been from the get go!
Then this afternoon we went and did our Y workout. We are trying out a new program called Couch to 5K in 9 weeks. Today was our 1st day, and we did good, although we sure felt it when we were done. It's a bit more of a workout than it looks on paper! :) I'm excited to progress thru it though!
This evening we had pizza and made applesauce pies for dessert! The kids each got to make their own little pies and thought it was super fun!
Tonight is my favorite show, America's Got Talent. We'll curl up together and watch it. Tomorrow Eli has his appt with the pediatrician and the testing for Celiac. Updates then!
Then this afternoon we went and did our Y workout. We are trying out a new program called Couch to 5K in 9 weeks. Today was our 1st day, and we did good, although we sure felt it when we were done. It's a bit more of a workout than it looks on paper! :) I'm excited to progress thru it though!
This evening we had pizza and made applesauce pies for dessert! The kids each got to make their own little pies and thought it was super fun!
Tonight is my favorite show, America's Got Talent. We'll curl up together and watch it. Tomorrow Eli has his appt with the pediatrician and the testing for Celiac. Updates then!
Monday, June 14, 2010
Monday update
Benjamin got his cast off this morning! They took off the cast and then did all of his xrays. They said it looks like it's healed nicely and that there was no need to put a new cast on. They said he needed to take it easy, and not be jumping around to much and such. Which won't be super easy with Ben, but all in all it's healed!
Eli also had his appt with PT and the dietician today. The dietician is wondering if Eli has Celiac Disease and if processing gluten could be what's hinder his weight gain. He's getting the calories, he's just not absorbing them. She wants Eli to go to the doc this week and get tested, so this will be done on Wednesday. She is waiting to hear from us tomorrow on what the swallow study shows.
I was able to get quite a bit of housework done today. The entire main level is clean, and all of the laundry done. All that's left is to vacuum the basement and the 3 bathroom need cleaned. Super nice to have gotten so much done. The garage is still an absolute disaster and I have got to get it one and organized and ready for the garage sale.
More updates as the week progresses!
Eli also had his appt with PT and the dietician today. The dietician is wondering if Eli has Celiac Disease and if processing gluten could be what's hinder his weight gain. He's getting the calories, he's just not absorbing them. She wants Eli to go to the doc this week and get tested, so this will be done on Wednesday. She is waiting to hear from us tomorrow on what the swallow study shows.
I was able to get quite a bit of housework done today. The entire main level is clean, and all of the laundry done. All that's left is to vacuum the basement and the 3 bathroom need cleaned. Super nice to have gotten so much done. The garage is still an absolute disaster and I have got to get it one and organized and ready for the garage sale.
More updates as the week progresses!
Sunday, June 13, 2010
Glimpse at the Week Ahead
Lots going on this week.
Monday~
Benjamin has his appt with the orthopedic surgeon. He will get re-xrayed and hopefully will get his cast off. I'm assuming he'll have a brace for a minimum of 2 weeks. I know when he had to have his cast changed 2 weeks ago he was still pretty darned sore. So we will see how it goes.
Eli has another appt with PT, and also has his 1st appt with the dietician. We are super curious to see what she has to say!
I'm also going to be having 2 friends come over! 1 is going to help out with all the little people, and the other is going to help me get the garage organized and ready for a garage sale! Fun stuff!
Tuesday~
Eli has his swallow study. We check into the hospital at 9:45. He is having this testing done at our other local hospital. We haven't been there. I can't remember the last time, years ago. And we quit going for a very specific reason, so we'll see how it goes. I'm super nervous about this test. If he is still silent aspirating then we will have to put him on only GT feeds, and nothing by mouth. This is obviously the worst case scenario.
Wednesday~
I have finally been able to get my OB appt schedualed. I'm hoping to get some answers and get to the bottom of some of the stuff. A friend of mine has offered to watch the kids so that will definitely make things alot easier!
Thursday~
As of right now **fingers crossed** we have no where to be. I'm hoping to get everything set up for the garage sale though! I also have Stitch and Bitch in the evening, which is one of the main highlights of my week!
Friday~
Eli has water works, it's with his PT/OT and it's water therapy. This will be his 1st week to go. We will also be having day 1 of the garage sale. Fun stuff.
Saturday~
Garage sale day 2. Also we have our next in home check in with the WSU therapy team, that's working to help set up a behavior system for Mr Ben. Our main therapist will be moving in July, so she will be beginning the transition of getting a new therapist situated and up to date!
In addition we are going to try a new workout program for me. There is so much going on during the day its hard for me to get to the Y in the morning. I'm going to start going 1st thing in the morning on monday, wednesday, thursday before Bob goes to work. Hoping that gets me a bit more consistency! Then on tuesday/friday when bob's off we can all go up as a family if we have time at any point!
That takes us thru some of the basics of the week. There are constantly things popping up and changing. We never know until we are in the middle of it all. I will try my best to keep up with updates during the week!
**make sure to glance at the 2 posts below this one for pics! 1 post from ben's birthday, and 1 from our family day saturday!**
Monday~
Benjamin has his appt with the orthopedic surgeon. He will get re-xrayed and hopefully will get his cast off. I'm assuming he'll have a brace for a minimum of 2 weeks. I know when he had to have his cast changed 2 weeks ago he was still pretty darned sore. So we will see how it goes.
Eli has another appt with PT, and also has his 1st appt with the dietician. We are super curious to see what she has to say!
I'm also going to be having 2 friends come over! 1 is going to help out with all the little people, and the other is going to help me get the garage organized and ready for a garage sale! Fun stuff!
Tuesday~
Eli has his swallow study. We check into the hospital at 9:45. He is having this testing done at our other local hospital. We haven't been there. I can't remember the last time, years ago. And we quit going for a very specific reason, so we'll see how it goes. I'm super nervous about this test. If he is still silent aspirating then we will have to put him on only GT feeds, and nothing by mouth. This is obviously the worst case scenario.
Wednesday~
I have finally been able to get my OB appt schedualed. I'm hoping to get some answers and get to the bottom of some of the stuff. A friend of mine has offered to watch the kids so that will definitely make things alot easier!
Thursday~
As of right now **fingers crossed** we have no where to be. I'm hoping to get everything set up for the garage sale though! I also have Stitch and Bitch in the evening, which is one of the main highlights of my week!
Friday~
Eli has water works, it's with his PT/OT and it's water therapy. This will be his 1st week to go. We will also be having day 1 of the garage sale. Fun stuff.
Saturday~
Garage sale day 2. Also we have our next in home check in with the WSU therapy team, that's working to help set up a behavior system for Mr Ben. Our main therapist will be moving in July, so she will be beginning the transition of getting a new therapist situated and up to date!
In addition we are going to try a new workout program for me. There is so much going on during the day its hard for me to get to the Y in the morning. I'm going to start going 1st thing in the morning on monday, wednesday, thursday before Bob goes to work. Hoping that gets me a bit more consistency! Then on tuesday/friday when bob's off we can all go up as a family if we have time at any point!
That takes us thru some of the basics of the week. There are constantly things popping up and changing. We never know until we are in the middle of it all. I will try my best to keep up with updates during the week!
**make sure to glance at the 2 posts below this one for pics! 1 post from ben's birthday, and 1 from our family day saturday!**
Family time Saturday
We spent saturday at home together as a family goofing around. We had fun with a mini photo shoot Saturday afternoon! I was behind the camera where I like to be, so no pictures of me...just the way I like it! Enjoy!
my toothless Jace. He's currently missing 3 teeth! :)
Ari was getting super sleepy and wanting picked up. So she's was trying to climb up my legs. Had to snap a photo before picking her up! :)
My silly Jace. Always making goofy faces, camera or not!
Hanging out at the table waiting on her lunch. Emily cleaned out her room and gave Ari some notebooks. Ari thinks they are super cool.
Gotta love the preteen attitude! SOOOOO much fun! LOL
Jace loves to hang out over Eli's play gym and play with him. Eli is beginning to use his hands more which results in Eli pulling at people's face or hair or whatever he can grab in his little fingers. Jace "complains" but keeps going back for more. Kissing are a constant too!
Bob hiding behind Emily give her "bunny ears". The kids thought this was hilarious and Emily jokingly said she'll "never speak to us again if this photo ends up on facebook." I figure this isn't facebook, and a moment or two of nobody speaking to me would be nice anyways! LOL
Emily is getting so dang old.
Again where has time gone???
Mr eli playing under his play gym.
eli and his play gym.
Mr Ben right after eating cheetos. He loves that it makes his fingers orange! We don't love it quite as much as he does. lol
My older 2 boys goofing off in the kitchen.
Bob attempting to make the kids lunch while they all goof off in the kitchen and I run around snapping pictures!
Bob goofing off in the living room right after the above bunny ears picture!
My cute Mr Ben. Sometimes he still looks so little!
doesn't she look so innocent?
I love her big smile!
Playing with Eli and his mirror.
my toothless Jace. He's currently missing 3 teeth! :)
Ari was getting super sleepy and wanting picked up. So she's was trying to climb up my legs. Had to snap a photo before picking her up! :)
My silly Jace. Always making goofy faces, camera or not!
Hanging out at the table waiting on her lunch. Emily cleaned out her room and gave Ari some notebooks. Ari thinks they are super cool.
Gotta love the preteen attitude! SOOOOO much fun! LOL
Jace loves to hang out over Eli's play gym and play with him. Eli is beginning to use his hands more which results in Eli pulling at people's face or hair or whatever he can grab in his little fingers. Jace "complains" but keeps going back for more. Kissing are a constant too!
Bob hiding behind Emily give her "bunny ears". The kids thought this was hilarious and Emily jokingly said she'll "never speak to us again if this photo ends up on facebook." I figure this isn't facebook, and a moment or two of nobody speaking to me would be nice anyways! LOL
Emily is getting so dang old.
Again where has time gone???
Mr eli playing under his play gym.
eli and his play gym.
Mr Ben right after eating cheetos. He loves that it makes his fingers orange! We don't love it quite as much as he does. lol
My older 2 boys goofing off in the kitchen.
Bob attempting to make the kids lunch while they all goof off in the kitchen and I run around snapping pictures!
Bob goofing off in the living room right after the above bunny ears picture!
My cute Mr Ben. Sometimes he still looks so little!
doesn't she look so innocent?
I love her big smile!
Playing with Eli and his mirror.
Ben's 5th Birthday!
Ben had a very low key birthday this year and he absolutely loved it. Simple is always best with Ben. My parents came over and Ben picked out his birthday dinner (breakfast casserole and french toast casserole..his favorite.) He selected his birthday cupcakes, with sprinkles baked inside of course! It was a nice quiet night at home all about him. He got a Thomas floor puzzle, his 1st bike, and his very own gaming system. He has been trying to play Jace's nintendo DS and he just isn't quite ready. So we finally settled on a Leapster 2. It was the perfect choice! He absolutely loves it! He has been playing non stop since he got it. It has some built in games, 1 free download game, and we purchased 2 additional games. It's gone everywhere with him. He'll be trying out his bike as soon as his cast is off and he's released by his doc to resume normal activities! 5 was exciting for him, but kindergarten is what he is waiting on. I think it will be a bigger celebration for him than his birthday! Here are a few pictures of Ben from his day!
Thursday, June 10, 2010
Test Update
We just got the results from Eli's test. His levels were within normal range. So CF is NOT what is causing the problems. Another thing ruled out. Onward and upward we go.
1st Test Done
This morning was Eli's Sweat Chloride Testing. We had to check into the hospital at 7:45. They weren't running to far behind so we actually got in fairly quickly. He wasn't thrilled about the test at all. The electrodes made him pretty uncomfortable and he had to do it on each arm. Then during the collection part he completely fell asleep. But then the ripping off of 17 pieces of tape woke him right the heck up. His poor little arms were super red by the time we left. Now he's pretty fussy. Hoping to get the results by the end of the day.
Eli has physical therapy today at 1pm. We were able to find the style of highchair she was wanting so hopefully that will prove to be helpful with his therapies as well!
The older 4 are doing well. Emily's toe is still a bit sore, mostly just if touched. She's walking and running around pretty well! Jace is same old, same old. He's constantly in trouble, and hurting others. Hoping for some answers soon. Benjamin has less than a week left in his cast, hopefully. He's pretty excited to get it off. He wants to go swimming so badly. Ari is doing well with her potty learning! She's been in underwear for 1 1/2 weeks, and only had a handful of accidents.
Bob is working as always. We are sooo ready for scheduale change coming up in the next few months! I'm ok. I've been on the headache meds for a little over a week. Seems to help the severity a touch, but not the frequency. I have another doc appt next week so hoping for more info.
I will update when I hear back from the doc on test results!
Eli has physical therapy today at 1pm. We were able to find the style of highchair she was wanting so hopefully that will prove to be helpful with his therapies as well!
The older 4 are doing well. Emily's toe is still a bit sore, mostly just if touched. She's walking and running around pretty well! Jace is same old, same old. He's constantly in trouble, and hurting others. Hoping for some answers soon. Benjamin has less than a week left in his cast, hopefully. He's pretty excited to get it off. He wants to go swimming so badly. Ari is doing well with her potty learning! She's been in underwear for 1 1/2 weeks, and only had a handful of accidents.
Bob is working as always. We are sooo ready for scheduale change coming up in the next few months! I'm ok. I've been on the headache meds for a little over a week. Seems to help the severity a touch, but not the frequency. I have another doc appt next week so hoping for more info.
I will update when I hear back from the doc on test results!
Wednesday, June 9, 2010
Testing Schedualed
We heard back from Dr Riva and we were able to get everything schedualed so far. He goes tomorrow for the Sweat Chloride Testing. We check into the hospital at 7:45am. Then next Tuesday we check in at 8:30am to another hospital for the swallow study. Hoping to get some answers. The scary part is if he is still aspirating then he's completely off all foods by mouth. That will mean continuous GT feeds and no nursing. I don't know if I will be able to keep my supply up to pump like that. I'm trying not to freak out about it and to simply cross that bridge when we get there.
Eli had to go to the doc this morning for a rash on the back of his head. He's been a super grouch since and is finally snoozing.
A friend has been coming over during the day and helping. Today while I was at the doc she had the kids help her clean the entire house. Then when I was home she took care of them and made lunch while I cooked dinner for tonight! And the company alone was sooo nice! It's been really nice reconnecting with her and hanging out!
Not much new anywhere else. Everything is same old same old! More updates soon!
Eli had to go to the doc this morning for a rash on the back of his head. He's been a super grouch since and is finally snoozing.
A friend has been coming over during the day and helping. Today while I was at the doc she had the kids help her clean the entire house. Then when I was home she took care of them and made lunch while I cooked dinner for tonight! And the company alone was sooo nice! It's been really nice reconnecting with her and hanging out!
Not much new anywhere else. Everything is same old same old! More updates soon!
Monday, June 7, 2010
Pulmonologist
Today was Eli's appt with Dr Riva, our pulmonologist. She was great and super informative. She is ordering a swallow study, sweat chloride testing, flexible bronchoscopy, rigid bronchoscopy, and overnight heartrate and oxygen saturation observation. Some of these will require full anesthesia and will be done in the OR. not looking forward to all of this. They will call this afternoon with all of the dates and times. She's testing for cystic fibrosis, and she's also thinking he is still silent aspirating. If it shows that he's still aspirating any then he's on 100% tube feeds and nothing at all by mouth. As everyone who knows us knows this would be a horrible scenario. I enjoy the fact that we've been able to balance day nursing with the continuous night feeds, and daytime bolus feeds. I love that bond with him and that time, and it's sooo dang good for him to be able to nurse directly at the breast. BUT obviously if he's aspirating and that why he keeps getting pneumonia then we'll have to make that decision for the safety of Eli.
I'm so worried to have another full anesthesia procedure. We have had a few months of a break, and we knew that we had 2 surgeries ahead but didn't realize that we would have to have it for a procedure. Nervous.
so many changes happening with Eli so quickly right now.
In other news today is a big day. Mr Benjamin is 5 years old!!!! Getting to be such a big man! We had his party this last weekend but tonight the kids and I will have a benjamin favorite dinner and I'll make a small cake! He's super excited that it's his birthday!
Not much else going on today. Eli is super fussy. I'm hoping to get some housework done, and maybe some knitting or crochet work. I have a few projects for people I need to get finished!
updates soon!
I'm so worried to have another full anesthesia procedure. We have had a few months of a break, and we knew that we had 2 surgeries ahead but didn't realize that we would have to have it for a procedure. Nervous.
so many changes happening with Eli so quickly right now.
In other news today is a big day. Mr Benjamin is 5 years old!!!! Getting to be such a big man! We had his party this last weekend but tonight the kids and I will have a benjamin favorite dinner and I'll make a small cake! He's super excited that it's his birthday!
Not much else going on today. Eli is super fussy. I'm hoping to get some housework done, and maybe some knitting or crochet work. I have a few projects for people I need to get finished!
updates soon!
Sunday, June 6, 2010
Sunday check In
I'm behind as always. I will try to catch up on updates the best that I can.
Emily~ She broke her toe. She got up to go to the bathroom in the middle of the night and tripped over something and broke her big toe. Since then the floor of her room has been kept alot cleaner, especially between her bed and the bathroom. :) Luckily it wasn't broken bad enough that she needs to go to an orthopedic surgeon, just tape it up and take it easy. Almost a week later it seems to be feeling a bit better.
Jace~ He's an absolute disaster. Everyone has been shocked over how out of control he's been. Punching, kicking, screaming, and all in all being very physically and verbally abusive. Right now we are on a no tolerance time out policy. He gets ZERO warnings and is immediately put in time out. We are trying to get it under control before the major physical problems begin. We have an appt tuesday to try and get some help.
Ben~ He had to get a new cast put on last week. He was goofing off while taking his bath and his cover partially slipped off. He did well for the removal of the old cast, but was pretty fussy when they put on the new cast because he was still pretty sore. They had to do all of the foot positioning all over again, and it's apparently still hurting a decent bit. We've got another 2 weeks until he gets everything xrayed again. Hoping his cast will come off permanently then! We had his birthday party last night and he had a great time! He got a large Thomas floor puzzle and a bike. He also finally got his own gaming system. We settled on the Leapster 2, and he's absolutely loving it. He spent the entire evening playing with it, and was right back up and playing this morning. His official birthday is tomorrow and I can't believe it's already been 5 years!!!
Ari~ She's almost completely our of pullups. She's been in underwear during the day and pullups at night for 1 week. She's woken up dry every single morning! She's had 2 dirty's in her underwear, and 1 wet in this week. Which is super good! In the last day or 2 she's gone on her own without a gentle reminder, and we've also spread the reminders out to about every 2 hrs so that's super good!
Eli~ He ended up back at the doc last week with a fever and super fussy. Turns out he has a yucky ear infection. Got him started on yet another round of antibiotics and he's doing much better. He had gained a touch of weight, but has now lost all of it again. He's tried some bananas and thought they were ok. Took 2 little finger dips by mouth and then we mixed 5cc of banana with 5cc of breastmilk and GT'ed it. Will try again today! He's nurse's scheduale are all screwed up right now. One of his nurses wasn't able to make the change to the new summer hours that we were needing so she quit. One of his other nurses was having some personal problems and was placed on administrative review so she is no longer with us as well. So right now that leaves us with 1 nurse, for 2 days a week, a total of 12 hours a week. This is a huge change from 7 days a week, 50 plus hours total. The nursing agency is scrambling to get new nurses found for our hours and get them trained. We are also working on hiring a PSA (personal service assistant) who can come into our home and help take care of Eli while we get things done. Hoping this will all happen quickly. His docs were able to get him a rush appt with the pulmonologist, and they were able to get him in on Monday. We've already been waiting for this appt for over 2 months! Super excited to hear what she has to say!
Bob~ He's working. He was off for 4 days over memorial weekend. It was nice to get to spend so much time together as a family. We didn't quite get done what we had hoped as all of the things occured with Eli's nurses on that weekend, so we ended up with no nursing at all. BUT it was still nice to be together, the 7 of us! He had a sick day last week, but after a doc check and some rest he's doing much better.
Car update...it's running, sort of. The parts did get it to turn on and such, but now it needs new tires, AND in the "near future" it needs new CV joints and a few other things. That will cost another 1400. Right now we've already paid double the car and that would take us triple. We can't do it. We are flat broke, and still only have 1 vehicle. Not sure what to do next.
Me~ I'm not the greatest. My headaches have been getting out of control. Ended up at the doc last week. She put me on a daily headache prevention med, a med to treat them once I have one, ran tons of lab work, and sent me for a rush CT. The lab work and CT came back clear, so she's still trying to figure out what's going on. There is an "irregular" spot on the right back of my head where the headaches originate from, but showed clear on the CT. She wants to try the meds for 2 weeks, and if no change she'll be sending me to a specialist. At this point I'm willing to try anything. I wake up with my headache, and go to bed with it. Many days I can hardly move it hurts so bad. The dizzy spells come and go with no warning. The back of my head hurts so bad I can't have it touched or lay with it touching the pillow. Not fun stuff. But as we all know life goes on. Bob is gone 12 hrs a day, and we have no nurses right now, so I push ahead, taking care of the 5 kids and the house.
We get emails and texts asking for updates on my ex. I don't have time to reply to all of them so I'll answer publicly here. The simple truth is this, we have no clue. I haven't spoken to him. He doesn't call, check in, email, nothing. He hasn't sent a penny, told me it's not his problem that I have no money to feed the kids. I can't file the court papers because it's food for my kids, or court papers. Bob is working to support 10 people, and Brian is supporting just 1, himself. Bob and I can't keep up. The kids are all still very upset with Brian. Emily apparently still randomly gets into it with him on facebook. She's done putting up with his lies and his crap. Brian hasn't sent a single card or gift since christmas. He missed valentines day, easter, ari's birthday, and ben's birthday. Rumor has it he's bought new electronics and tickets to an excruciatingly expensive concert in a city very close to us here in kansas. Mind you he can't visit his children because it's to expensive to travel to kansas(where he has a free place to stay). All in all, it's Brian guys. You all know how he is, nobody is shocked by this behavior...well except for his children. If and when anything ever changes I promise to update publicly here, but in the mean time no updates mean no good news. He's the same piece of shit he always has been, and sadly for his children...always probably will be.
Back to MY family....
This week we have Eli's appt with the pulmonologist, his check in with his pediatrician, working on trying some more food by mouth, and thru GT push, and some new therapy techniques. He will also be meeting his new dietician this week.
We have the appt with the family psychologist to get some ideas on how to better deal with and resolve Jace's violence. We have Ben's recheck with his therapist team. Hopefully some new nurse training. And I'm in general hoping to get some more knitting and crocheting done, and some baking!
updates soon. love to all!
Emily~ She broke her toe. She got up to go to the bathroom in the middle of the night and tripped over something and broke her big toe. Since then the floor of her room has been kept alot cleaner, especially between her bed and the bathroom. :) Luckily it wasn't broken bad enough that she needs to go to an orthopedic surgeon, just tape it up and take it easy. Almost a week later it seems to be feeling a bit better.
Jace~ He's an absolute disaster. Everyone has been shocked over how out of control he's been. Punching, kicking, screaming, and all in all being very physically and verbally abusive. Right now we are on a no tolerance time out policy. He gets ZERO warnings and is immediately put in time out. We are trying to get it under control before the major physical problems begin. We have an appt tuesday to try and get some help.
Ben~ He had to get a new cast put on last week. He was goofing off while taking his bath and his cover partially slipped off. He did well for the removal of the old cast, but was pretty fussy when they put on the new cast because he was still pretty sore. They had to do all of the foot positioning all over again, and it's apparently still hurting a decent bit. We've got another 2 weeks until he gets everything xrayed again. Hoping his cast will come off permanently then! We had his birthday party last night and he had a great time! He got a large Thomas floor puzzle and a bike. He also finally got his own gaming system. We settled on the Leapster 2, and he's absolutely loving it. He spent the entire evening playing with it, and was right back up and playing this morning. His official birthday is tomorrow and I can't believe it's already been 5 years!!!
Ari~ She's almost completely our of pullups. She's been in underwear during the day and pullups at night for 1 week. She's woken up dry every single morning! She's had 2 dirty's in her underwear, and 1 wet in this week. Which is super good! In the last day or 2 she's gone on her own without a gentle reminder, and we've also spread the reminders out to about every 2 hrs so that's super good!
Eli~ He ended up back at the doc last week with a fever and super fussy. Turns out he has a yucky ear infection. Got him started on yet another round of antibiotics and he's doing much better. He had gained a touch of weight, but has now lost all of it again. He's tried some bananas and thought they were ok. Took 2 little finger dips by mouth and then we mixed 5cc of banana with 5cc of breastmilk and GT'ed it. Will try again today! He's nurse's scheduale are all screwed up right now. One of his nurses wasn't able to make the change to the new summer hours that we were needing so she quit. One of his other nurses was having some personal problems and was placed on administrative review so she is no longer with us as well. So right now that leaves us with 1 nurse, for 2 days a week, a total of 12 hours a week. This is a huge change from 7 days a week, 50 plus hours total. The nursing agency is scrambling to get new nurses found for our hours and get them trained. We are also working on hiring a PSA (personal service assistant) who can come into our home and help take care of Eli while we get things done. Hoping this will all happen quickly. His docs were able to get him a rush appt with the pulmonologist, and they were able to get him in on Monday. We've already been waiting for this appt for over 2 months! Super excited to hear what she has to say!
Bob~ He's working. He was off for 4 days over memorial weekend. It was nice to get to spend so much time together as a family. We didn't quite get done what we had hoped as all of the things occured with Eli's nurses on that weekend, so we ended up with no nursing at all. BUT it was still nice to be together, the 7 of us! He had a sick day last week, but after a doc check and some rest he's doing much better.
Car update...it's running, sort of. The parts did get it to turn on and such, but now it needs new tires, AND in the "near future" it needs new CV joints and a few other things. That will cost another 1400. Right now we've already paid double the car and that would take us triple. We can't do it. We are flat broke, and still only have 1 vehicle. Not sure what to do next.
Me~ I'm not the greatest. My headaches have been getting out of control. Ended up at the doc last week. She put me on a daily headache prevention med, a med to treat them once I have one, ran tons of lab work, and sent me for a rush CT. The lab work and CT came back clear, so she's still trying to figure out what's going on. There is an "irregular" spot on the right back of my head where the headaches originate from, but showed clear on the CT. She wants to try the meds for 2 weeks, and if no change she'll be sending me to a specialist. At this point I'm willing to try anything. I wake up with my headache, and go to bed with it. Many days I can hardly move it hurts so bad. The dizzy spells come and go with no warning. The back of my head hurts so bad I can't have it touched or lay with it touching the pillow. Not fun stuff. But as we all know life goes on. Bob is gone 12 hrs a day, and we have no nurses right now, so I push ahead, taking care of the 5 kids and the house.
We get emails and texts asking for updates on my ex. I don't have time to reply to all of them so I'll answer publicly here. The simple truth is this, we have no clue. I haven't spoken to him. He doesn't call, check in, email, nothing. He hasn't sent a penny, told me it's not his problem that I have no money to feed the kids. I can't file the court papers because it's food for my kids, or court papers. Bob is working to support 10 people, and Brian is supporting just 1, himself. Bob and I can't keep up. The kids are all still very upset with Brian. Emily apparently still randomly gets into it with him on facebook. She's done putting up with his lies and his crap. Brian hasn't sent a single card or gift since christmas. He missed valentines day, easter, ari's birthday, and ben's birthday. Rumor has it he's bought new electronics and tickets to an excruciatingly expensive concert in a city very close to us here in kansas. Mind you he can't visit his children because it's to expensive to travel to kansas(where he has a free place to stay). All in all, it's Brian guys. You all know how he is, nobody is shocked by this behavior...well except for his children. If and when anything ever changes I promise to update publicly here, but in the mean time no updates mean no good news. He's the same piece of shit he always has been, and sadly for his children...always probably will be.
Back to MY family....
This week we have Eli's appt with the pulmonologist, his check in with his pediatrician, working on trying some more food by mouth, and thru GT push, and some new therapy techniques. He will also be meeting his new dietician this week.
We have the appt with the family psychologist to get some ideas on how to better deal with and resolve Jace's violence. We have Ben's recheck with his therapist team. Hopefully some new nurse training. And I'm in general hoping to get some more knitting and crocheting done, and some baking!
updates soon. love to all!
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