It's pretty quiet here right now. Boys are playing, Lili is sitting next to me, loving on me, smiling as I type this. Sofia is playing, Oscar is in the pool with some friends and Papa is taking a nap. He worked over night, slept a couple of hours in the truck, came home and went to church with us and now after his nap he will go back to work again.
He is basically taking any load that's being offered right now. One of the plant's that he unloads at, is laying off 160 people and will close down completely at the end of the year. So the bad economy is starting to trickle down to transporation as well, slowly but surely. This whole country is going down, but hey...........................pretty soon we'll all have "free healthcare" and Obama got the Nobel price for peace...........( I haven't figured out for what exactly...............)
My eyes are rolling.......................BIG TIME !!!!!
How is all that "hope and change" working out for you ???
I need to get me one of those bumper stickers !!!
Sunday, October 11, 2009
Friday, October 9, 2009
New mic-Key button
Sebastian needed a new Mic-Key button, a new size, a whole 3 mm smaller. Seems like nothing but the old one was sticking out, so he constantly was pushing it in.
He has been super protective of his G tube site, we are suspecting there is granulation tissue on the inside. We could do an endoscopy to confirm this, but since there's not a whole lot we can do about it, I told them that thanks but no thanks, we'll skip the endoscopy !! ( another sedation, for what...............)
Anyway, so when I mentioned his new button was delivered and we were going to put the new one in, Sebastian was less than enthusiastic ! He let me take the water out of the valve and then we all cheered him on to pull it out himself. He got a great kick out of that !!! LOL and he did it. Then I squirted the "jelly" on his tummy and told him to spread it out, gave him the new button and told him he could put the new button in himself. I helped him a little bit ( we really need to push it to get it past the granulation tissue, you can feel it "pop") but he was so proud of himself and "it didn't hurt !"
The new button looks much, much better. It's flush against the skin, instead of sticking out. So now we have a brand new set of a Mic-Key gastro button, 14 fr 2.0
Anyone needs this ??? Let me know, I'll ship it out to you !
He has been super protective of his G tube site, we are suspecting there is granulation tissue on the inside. We could do an endoscopy to confirm this, but since there's not a whole lot we can do about it, I told them that thanks but no thanks, we'll skip the endoscopy !! ( another sedation, for what...............)
Anyway, so when I mentioned his new button was delivered and we were going to put the new one in, Sebastian was less than enthusiastic ! He let me take the water out of the valve and then we all cheered him on to pull it out himself. He got a great kick out of that !!! LOL and he did it. Then I squirted the "jelly" on his tummy and told him to spread it out, gave him the new button and told him he could put the new button in himself. I helped him a little bit ( we really need to push it to get it past the granulation tissue, you can feel it "pop") but he was so proud of himself and "it didn't hurt !"
The new button looks much, much better. It's flush against the skin, instead of sticking out. So now we have a brand new set of a Mic-Key gastro button, 14 fr 2.0
Anyone needs this ??? Let me know, I'll ship it out to you !
diet update
Week 5 and I have lost 25 lbs !! Wahoooooooooo, back in size 16 !!! Feeling much, much better !! Skinny jeans here I come...................(in a couple of months LOL)
Max is going to try a full day today. I just spoke to his teacher, apparently he had a little nap this morning, they were doing centers and he just fell asleep, but feeling good now. Specials this afternoon is computerlab and he loves that, so hopefully he'll have a good day.
Sebastian and Lili's school pics came back and they both look funny and sweet. No cramped fake smile. Lili's makes me smile....................I'll have to see if there's a way to post them.
Off to take some stuff to church. We are having yard sale and Fall festival tomorrow. Lots of fun stuff for the kids to do, including the waterslide ( it's Flordia people, HOT )face painting, etc
Papa and Oscar have their last Reefraker dive tomorrow, the weather should be gorgeous.
Max is going to try a full day today. I just spoke to his teacher, apparently he had a little nap this morning, they were doing centers and he just fell asleep, but feeling good now. Specials this afternoon is computerlab and he loves that, so hopefully he'll have a good day.
Sebastian and Lili's school pics came back and they both look funny and sweet. No cramped fake smile. Lili's makes me smile....................I'll have to see if there's a way to post them.
Off to take some stuff to church. We are having yard sale and Fall festival tomorrow. Lots of fun stuff for the kids to do, including the waterslide ( it's Flordia people, HOT )face painting, etc
Papa and Oscar have their last Reefraker dive tomorrow, the weather should be gorgeous.
Wednesday, October 7, 2009
Is it fall yet ??
Because I really can't tell !!! It is so hot here, it feels like we're in the middle of summer !!!
I am sitting outside with my laptop, fan 5 feet from me at full speed, keeping an eye on the boys, they're splashing around in the pool.
This morning I had a physicl scheduled for Sofia. I always schedule appointments in the morning, if at all possible. Simple reason........that way I can only go with the child that has the appointment and they never have to go back to school that day, it's mommy time.
Just picture and appointment in the afternoon, where i have to take all of them........................no, thank you!!!! LOL
Sofia was a trooper with her flu shot (regular one, not the H1N1, that hasn't come in yet)
Her weight is in the 45% and her height as dropped to the 15%, but we kind of already knew that ! Dr had a little talk with her about sometimes feeling weird/sad/angry, it was all normal, but she has to try to control herself a little..................great advice, now if she would only do it !!
After her appointment she wanted to go to Goodwill, to look for Beanie Babies, so to the bargain barn we went. Found great shorts for Max, several pairs, size 7, so probably for next spring. they have the inside elastic so we can make the waistband smaller.
We are going to make pizza's after the boys are done swimming. Yup homemade pizza. I bought the ready dough at Wal-mart, should be fun!!
I am sitting outside with my laptop, fan 5 feet from me at full speed, keeping an eye on the boys, they're splashing around in the pool.
This morning I had a physicl scheduled for Sofia. I always schedule appointments in the morning, if at all possible. Simple reason........that way I can only go with the child that has the appointment and they never have to go back to school that day, it's mommy time.
Just picture and appointment in the afternoon, where i have to take all of them........................no, thank you!!!! LOL
Sofia was a trooper with her flu shot (regular one, not the H1N1, that hasn't come in yet)
Her weight is in the 45% and her height as dropped to the 15%, but we kind of already knew that ! Dr had a little talk with her about sometimes feeling weird/sad/angry, it was all normal, but she has to try to control herself a little..................great advice, now if she would only do it !!
After her appointment she wanted to go to Goodwill, to look for Beanie Babies, so to the bargain barn we went. Found great shorts for Max, several pairs, size 7, so probably for next spring. they have the inside elastic so we can make the waistband smaller.
We are going to make pizza's after the boys are done swimming. Yup homemade pizza. I bought the ready dough at Wal-mart, should be fun!!
Tuesday, October 6, 2009
What a day !!
I have not had one of these days from he!! for a long time !!
Sebastian had an appointment with GI this morning, he did gain a little bit, but has not grown in length. For the family in Holland......Sebastian (who is almost 4 1/2) now is 100 cm in length and weighs 15 1/2 lbs.................20% percentile here. i think in Holland he wouldn't even be on the chart !
We are adding another bolus feed at naptime, which means he is going to school with a backpack again, sigh.........
We are going to try a button a size down, since the one he has now is sticking out a lot (belly fat has gone down)
The good news is that medicaid is now covering MicKey buttons, which solves the whole problem I was having with CMS.
CMS stands for Children Medical services, a wonderful program that helps medically involved children and their parents. they make appointments with all the specialists and pick up where medicaid drops the ball. In Sebastian's case, CMS paid for his buttons ( $150 per button, some last a couple of months and some last less than a week, typically the balloon on the inside (that keeps the button anchored in the stomach)starts leaking slowly or pops. No fixing it.
Not every pediatrician is connected with CMS and so in order to stay with CMS, we had to change peds, which I really didn't want to do..............................now we don't have to. Sebastian will not be with CMS anymore, which by now really was only for the button situation, shoot, I can make my own appointments......
Anyhoo, Sebastian was a BRAT during the appointment, really testing behaviors. On the way home we picked up Max, who still is doing half days in school. Then came the WIC appointment..........................................................
OH MY GOD !!!!!!!!!!!!!!!!!!!!!!! I had all the RX and papers I needed, there was a new nutritionist.....................who gave me a little sheet of paper that needs to be filled out by the dr.
By the grace of God, she gave me checks for a month of pediasure, her problem was a lack of a diagnosis on the RX.
LADY, the kid has a feeding tube !!!!!!!!!!!!!!!!!!!!!!!!!
His file is at least 4" thick...................................
The ladies at the checkout even asked me...why in the world she only gave you 1 month ?(I have known these girls for almost 10 years now) Uhm, don't know, power trips, period................take your pick, just get me out of here, before I explode !!!
Max and Sebastian were bouncing off the walls or whining or crying
AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGGGGGHHHHH
Bedtime is 7 pm tonight and mine won't be long after that !!!!
Sebastian had an appointment with GI this morning, he did gain a little bit, but has not grown in length. For the family in Holland......Sebastian (who is almost 4 1/2) now is 100 cm in length and weighs 15 1/2 lbs.................20% percentile here. i think in Holland he wouldn't even be on the chart !
We are adding another bolus feed at naptime, which means he is going to school with a backpack again, sigh.........
We are going to try a button a size down, since the one he has now is sticking out a lot (belly fat has gone down)
The good news is that medicaid is now covering MicKey buttons, which solves the whole problem I was having with CMS.
CMS stands for Children Medical services, a wonderful program that helps medically involved children and their parents. they make appointments with all the specialists and pick up where medicaid drops the ball. In Sebastian's case, CMS paid for his buttons ( $150 per button, some last a couple of months and some last less than a week, typically the balloon on the inside (that keeps the button anchored in the stomach)starts leaking slowly or pops. No fixing it.
Not every pediatrician is connected with CMS and so in order to stay with CMS, we had to change peds, which I really didn't want to do..............................now we don't have to. Sebastian will not be with CMS anymore, which by now really was only for the button situation, shoot, I can make my own appointments......
Anyhoo, Sebastian was a BRAT during the appointment, really testing behaviors. On the way home we picked up Max, who still is doing half days in school. Then came the WIC appointment..........................................................
OH MY GOD !!!!!!!!!!!!!!!!!!!!!!! I had all the RX and papers I needed, there was a new nutritionist.....................who gave me a little sheet of paper that needs to be filled out by the dr.
By the grace of God, she gave me checks for a month of pediasure, her problem was a lack of a diagnosis on the RX.
LADY, the kid has a feeding tube !!!!!!!!!!!!!!!!!!!!!!!!!
His file is at least 4" thick...................................
The ladies at the checkout even asked me...why in the world she only gave you 1 month ?(I have known these girls for almost 10 years now) Uhm, don't know, power trips, period................take your pick, just get me out of here, before I explode !!!
Max and Sebastian were bouncing off the walls or whining or crying
AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGGGGGHHHHH
Bedtime is 7 pm tonight and mine won't be long after that !!!!
Sunday, October 4, 2009
Impact
Today after church we were at the playground and I started talking to G. She came up to me the very first time we attended this church, saying; " I remember you, you are the lady with the twin preemies" LOL. That was exactly a year ago when we fostered R&R, little twin girls, the kids had a party at Chuckee Cheese and that's where we met.
Usually we just talk about the kids, like most moms. G is a little spitfire, has 4 kids and homeschools. One of the people that I look at in amazement and really admire for being able to do that !
Today was different, she started telling me she was a foster child herself for 9 years...........................9 years.......and then she turned 18 and was on her own. Thank God we have something called Independent Living now for foster teens, until they are 21.
She told me a little about her family, her siblings, how bad things were, the impact on her life and her siblings.................how some days are fine and how sometimes she just has a really hard time with all this. By now she has tears in her eyes and she has me close to tears, and then she said.............................
" I still just want my mom"
and I saw not the strong, homeschooling mom of 4 beautiful kids.
I saw a vulnerable, young woman, who after all these years and all that she has been through, still just longs for one thing.....................her mom.................for her mom to be there, be proud of her and love her.
G's head knows this is very unlikely to happen, but as she asked me, how do I heal my heart.................................
I didn't know what to say...................other than give her a huge hug........................what do you say..................
I have thought about her all day, I have prayed for her several times, that God will heal her heart, that He will heal that little girl inside of her............................
She is 10 years younger than I am, maybe she'll take me as a big sister, someone she can call when the kids are sick, or when she needs a break, or a laugh, or a cry.
She really made a huge impact one me today and I know there is a purpose to this.........................................
God bless her heart and heal her spirit !!!
Usually we just talk about the kids, like most moms. G is a little spitfire, has 4 kids and homeschools. One of the people that I look at in amazement and really admire for being able to do that !
Today was different, she started telling me she was a foster child herself for 9 years...........................9 years.......and then she turned 18 and was on her own. Thank God we have something called Independent Living now for foster teens, until they are 21.
She told me a little about her family, her siblings, how bad things were, the impact on her life and her siblings.................how some days are fine and how sometimes she just has a really hard time with all this. By now she has tears in her eyes and she has me close to tears, and then she said.............................
" I still just want my mom"
and I saw not the strong, homeschooling mom of 4 beautiful kids.
I saw a vulnerable, young woman, who after all these years and all that she has been through, still just longs for one thing.....................her mom.................for her mom to be there, be proud of her and love her.
G's head knows this is very unlikely to happen, but as she asked me, how do I heal my heart.................................
I didn't know what to say...................other than give her a huge hug........................what do you say..................
I have thought about her all day, I have prayed for her several times, that God will heal her heart, that He will heal that little girl inside of her............................
She is 10 years younger than I am, maybe she'll take me as a big sister, someone she can call when the kids are sick, or when she needs a break, or a laugh, or a cry.
She really made a huge impact one me today and I know there is a purpose to this.........................................
God bless her heart and heal her spirit !!!
lost post
I had written this long post about max' appointment with neurology and for some reason it didn't post and it wasn't saved either, UGH
the short of it...................Max is doing okay, EEG was good, they suspect there is some swelling on the brain as a result of fighting the flu combined with the reaction to the tamiflu. He was allowed to go back to school, half days only for the next 2 weeks until we go back for a follow up. He has mostly good days, usually sleeps a good nap, this morning he slept in church, out like a light. LOL
the short of it...................Max is doing okay, EEG was good, they suspect there is some swelling on the brain as a result of fighting the flu combined with the reaction to the tamiflu. He was allowed to go back to school, half days only for the next 2 weeks until we go back for a follow up. He has mostly good days, usually sleeps a good nap, this morning he slept in church, out like a light. LOL
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