Kiaras tribe. She had so much fun with a ll her friends and such
my kids
i love this pic
Wednesday, July 18, 2007
Vacation Bible School
Last week the kids spent the week at VBS at one of the country churches. THey had so much fun. They were told if they brought 50 kids they could soak the pastor, What did they do ... they achieved 50 kids.!!!
So they soaked the pastor on t he last day.
Shalom Kavareem, Kiaras favorite song... "til we meet again til we meet again... shalom shalom. "
Sunday, July 8, 2007
My children
Wow what a disaster but at least they are having fun. I will try to download a pic to post so all can see.
How many blankets they have out you ask? Well let me see at least 4 and some towels and they are living under it all according to them.
LOL
How many blankets they have out you ask? Well let me see at least 4 and some towels and they are living under it all according to them.
LOL
NIH
We did our month of medication and are still awaiting to get some more meds across the border .OUr last shipment was stopped at the border and we were unable to receive it.
THey are trying to figure out why and trying to wait to book us a return date.
Vanessa
THey are trying to figure out why and trying to wait to book us a return date.
Vanessa
Josiah
Is in the TRachea care unit now. He is ok. You can follow the prognosis of this fine little boy at www.andyman-sdg.blogspot.com
Wow
Ive forgotten all about this lately. May 31st I hurt myself at work and have been off since. Ive been enjoying the time with my kiddos. I went to a physiotherapist and they wont see me again til I see an orthoped.. I see one on the 17th of July.
Work... well .They are wondering when they will see me back i have a feeling they wont be seeing me back. I think that I dislocated my shoulder thus this should never have happened again. I had shoulder surgery and it was supposed to be very difficult to do again. I may be hooped!
Oh well.
Work... well .They are wondering when they will see me back i have a feeling they wont be seeing me back. I think that I dislocated my shoulder thus this should never have happened again. I had shoulder surgery and it was supposed to be very difficult to do again. I may be hooped!
Oh well.
Sunday, May 13, 2007
NIH
Well we went to the NIH and came home on another injection called kineret. This is to lower fevers and help with the arthritic pain. I really hope it doesnt make her monstrous like the other med did.
We will return there in August or sept for a follow up/
We will return there in August or sept for a follow up/
Monday, May 7, 2007
NIH
Today we are at the NIH in Bethesda Maryland. WE flew in last night and are here til thursday. SHould be fun. Bought over 500 dollars worth of clothing today for 170 pretty good eh!
Wednesday, May 2, 2007
Josiah
Todays posting on the blog
Greetings All
Today has been pretty good for Josiah. He has been taken off his paralysis, but is still receiving a lot of sedatives to keep him sleepy and morphine to take off the pain. Earlier in the day he was brady-ing/d-sating but that seems to be improving with each handling. He's also receiving full feeds continuously (milk is regulated by a machine so that it doesn't go into his belly too fast).
For a while there he was difficult to ventilate, but he was given a different machine that seems to meet his needs better. So he takes breathe right now on his own power, but the machine will jump in a breathe for him if he doesn't draw in enough air.
Right now the biggest concern is his leak around the trache. As his stoma (the incision in his throat) heals, the seal will be better but until then we just have wait to see what happens. Too much air is escaping out of his throat and not going into his lungs. So he's not getting the volume and pressure he needs, but his oxygen percentage remains decent. An X-ray of his chest shows that one of his lungs might be partially collapsed, but it could also be that he has fluid in his lungs. With this information pneumonia is a serious concern, but right now he seems to be coughing up a lot of those secretions and taking deeper breathes so hopefully his lungs are improving.
Josiah is squiggling and moving his body a little. He also openned up his eyes a little which was so nice to see, but he's still waaaaaaaaaay too groggy to really be alert a look around. Right now Marie has him sucking a soother ... which has to be a pretty surreal experience now that he doesn't have a tube in the way and can enjoy a full (not cut in half) soother!
Josiah's G-Tube surgery is still scheduled for May 9. Appearantly it's nothing compared to trache surgery, but eh ... it's still surgery, right? In a couple weeks (after the morphine, sedatives, and paralysis has completely worn off) we'll bring in an OT (occupational therapist) to observe his swallowing technique. That is HUGE - if Josiah can breathe on his own it doesn't solve all his problems, but gives us the hope that he might be able to manage his spit ups and burps, not allowing them to go down into his lungs.
We are also praying for his surgery to heal well. There is a bit of an ulcer forming under the trache from the appliance rubbing the skin, and his double-chin is sometimes getting in the way, but all in all it's doing OK. The main thing is that the trache needs to remain 90 degrees to his body, and the sensitive area needs to remain dry (the have placed gauze around the trache to absorb the post-op 'ooze' that secretes from the area).
Enjoy the pics of our man! Time for me to get some dinner.
All glory & praise to God who is good and does good things.
- Andrew, Marie & Josiah
Greetings All
Today has been pretty good for Josiah. He has been taken off his paralysis, but is still receiving a lot of sedatives to keep him sleepy and morphine to take off the pain. Earlier in the day he was brady-ing/d-sating but that seems to be improving with each handling. He's also receiving full feeds continuously (milk is regulated by a machine so that it doesn't go into his belly too fast).
For a while there he was difficult to ventilate, but he was given a different machine that seems to meet his needs better. So he takes breathe right now on his own power, but the machine will jump in a breathe for him if he doesn't draw in enough air.
Right now the biggest concern is his leak around the trache. As his stoma (the incision in his throat) heals, the seal will be better but until then we just have wait to see what happens. Too much air is escaping out of his throat and not going into his lungs. So he's not getting the volume and pressure he needs, but his oxygen percentage remains decent. An X-ray of his chest shows that one of his lungs might be partially collapsed, but it could also be that he has fluid in his lungs. With this information pneumonia is a serious concern, but right now he seems to be coughing up a lot of those secretions and taking deeper breathes so hopefully his lungs are improving.
Josiah is squiggling and moving his body a little. He also openned up his eyes a little which was so nice to see, but he's still waaaaaaaaaay too groggy to really be alert a look around. Right now Marie has him sucking a soother ... which has to be a pretty surreal experience now that he doesn't have a tube in the way and can enjoy a full (not cut in half) soother!
Josiah's G-Tube surgery is still scheduled for May 9. Appearantly it's nothing compared to trache surgery, but eh ... it's still surgery, right? In a couple weeks (after the morphine, sedatives, and paralysis has completely worn off) we'll bring in an OT (occupational therapist) to observe his swallowing technique. That is HUGE - if Josiah can breathe on his own it doesn't solve all his problems, but gives us the hope that he might be able to manage his spit ups and burps, not allowing them to go down into his lungs.
We are also praying for his surgery to heal well. There is a bit of an ulcer forming under the trache from the appliance rubbing the skin, and his double-chin is sometimes getting in the way, but all in all it's doing OK. The main thing is that the trache needs to remain 90 degrees to his body, and the sensitive area needs to remain dry (the have placed gauze around the trache to absorb the post-op 'ooze' that secretes from the area).
Enjoy the pics of our man! Time for me to get some dinner.
All glory & praise to God who is good and does good things.
- Andrew, Marie & Josiah
Tuesday, May 1, 2007
May 1st
WOW Its May already. I sometimes feel like the world is going round me as fast as it can and im missing something. Ive had a few days off from work and i am so content. However I do miss the residents and such.
Kiara and I fly back to the NIH in Maryland next week. We are very excited to go.
Kiara loves to fly. It is a long day but we can handle it.
Kiara and I fly back to the NIH in Maryland next week. We are very excited to go.
Kiara loves to fly. It is a long day but we can handle it.
JOsiah
For anyone following him.. I have added a posting below for you to see.
He is adorable and we just pray that gods will is being done. As parents it is so hard to see a child with a lifetime disability and unknown certainty. There is no rhyme or reason. There is no parent who wouldnt want to do everything for their child. However, when does it become too much?
He is adorable and we just pray that gods will is being done. As parents it is so hard to see a child with a lifetime disability and unknown certainty. There is no rhyme or reason. There is no parent who wouldnt want to do everything for their child. However, when does it become too much?
Josiah
Recent posting from his family
Josiah is back in the NICU, in the same room (41) but in a different spot, a sperated side room where he can be watched and kept isolated for the next few days.
Josiah is well doped, though he did try to arch his back on his way back from the OR (catching the nurses by surprise, but he didn't do any harm to himself!) Josiah will be on IV for at least the next day, but may be able to get back on milk tomorrow. As long as Josiah is sedated like this, he will also be on a ventilator since he isn't alert enough to breathe on his own yet.
Everything has gone well up to this point. It's hard for Marie and I to adjust to the fact he'll have this appliance attached to him for a while, but it's so wonderful to see his full face again.
Prayer requests: that Josiah will heal fully and quickly, that he will be able to breathe on his own when that time comes, that the community nurses will be in place for when we are ready to go, for strength for Marie and I through these days, and that Josiah will be protected from harm, injury, viruses and infections now and throughout his time on the 'trache'. I have mentioned it before, but Josiah is now much more vulnerable to viruses and infections now that he's on the trache. This is part of the reason there is a 15% risk of Sudden Death for those who live with a trache. Yeah, talk about living under God's mercy.
We may post later in the day, but who knows. Right now we're just adjusting. In ending, I'll post the lyrics to a song that's been on repeat for me. Kudos and back-slaps for anyone who knows the band!
I know one day, all our scars will disappear,
like the stars at dawnand all of our pain,
will fade away when morning comes
and on that day when we look backwards we will see,
that everything is changed
and all of our trials, will be as milestones on the way
and as long as we live,
every scar is a bridge to someone's broken heart
and there's no greater love,
than that one shed his blood for his friends
on that day all of the scales will swing to set all the wrongs to right
all of our tears, and all of our fears will take to flight
but until then all of our scars will still remain,
but we've learned that if we'll
open the wounds and share them then soon they start to heal
as long as we live,
every scar is a bridge to someone's broken heart
and there's no greater love,
than that one shed his blood for his friends
we must see that every scar is a bridge,
and as long as we live we must open up these wounds
when some one stands in your shoes and will shed his own blood
there's no greater love. we must open up our wounds
Josiah is back in the NICU, in the same room (41) but in a different spot, a sperated side room where he can be watched and kept isolated for the next few days.
Josiah is well doped, though he did try to arch his back on his way back from the OR (catching the nurses by surprise, but he didn't do any harm to himself!) Josiah will be on IV for at least the next day, but may be able to get back on milk tomorrow. As long as Josiah is sedated like this, he will also be on a ventilator since he isn't alert enough to breathe on his own yet.
Everything has gone well up to this point. It's hard for Marie and I to adjust to the fact he'll have this appliance attached to him for a while, but it's so wonderful to see his full face again.
Prayer requests: that Josiah will heal fully and quickly, that he will be able to breathe on his own when that time comes, that the community nurses will be in place for when we are ready to go, for strength for Marie and I through these days, and that Josiah will be protected from harm, injury, viruses and infections now and throughout his time on the 'trache'. I have mentioned it before, but Josiah is now much more vulnerable to viruses and infections now that he's on the trache. This is part of the reason there is a 15% risk of Sudden Death for those who live with a trache. Yeah, talk about living under God's mercy.
We may post later in the day, but who knows. Right now we're just adjusting. In ending, I'll post the lyrics to a song that's been on repeat for me. Kudos and back-slaps for anyone who knows the band!
I know one day, all our scars will disappear,
like the stars at dawnand all of our pain,
will fade away when morning comes
and on that day when we look backwards we will see,
that everything is changed
and all of our trials, will be as milestones on the way
and as long as we live,
every scar is a bridge to someone's broken heart
and there's no greater love,
than that one shed his blood for his friends
on that day all of the scales will swing to set all the wrongs to right
all of our tears, and all of our fears will take to flight
but until then all of our scars will still remain,
but we've learned that if we'll
open the wounds and share them then soon they start to heal
as long as we live,
every scar is a bridge to someone's broken heart
and there's no greater love,
than that one shed his blood for his friends
we must see that every scar is a bridge,
and as long as we live we must open up these wounds
when some one stands in your shoes and will shed his own blood
there's no greater love. we must open up our wounds
Wednesday, April 25, 2007
Josiah
Please continue to pray for this little man. Today was his trial extubation and it was unsuccessful. Next week t hey will be doing a tracheotomy and an NG tube. There is no guarantee that either will work.
www.andyman-sdg.blogspot.com
www.andyman-sdg.blogspot.com
Sunday, February 25, 2007
prayer for Josiah
From Andrew and Marie So, we're asking for God to do a miracle. A miracle to heal his airways, to open them up so that Josiah can breathe comfortably and consistently on his own, and that the epiglottis behind his tongue would develop to the point that Josiah can swallow without food going into his larynx. If you could pray specifically with us to that end, we would really appreciate it.
So please pray as they are unsure of the long term consequences of this disease
So please pray as they are unsure of the long term consequences of this disease
Tuesday, February 20, 2007
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To get your own policy, go to http://www.disclosurepolicy.org
This blog is a personal blog written and edited by me. This blog accepts forms of cash advertising, sponsorship, paid insertions or other forms of compensation.
The compensation received may influence the advertising content, topics or posts made in this blog. That content, advertising space or post may not always be identified as paid or sponsored content.
The owner(s) of this blog is compensated to provide opinion on products, services, websites and various other topics. Even though the owner(s) of this blog receives compensation for our posts or advertisements, we always give our honest opinions, findings, beliefs, or experiences on those topics or products. The views and opinions expressed on this blog are purely the bloggers' own. Any product claim, statistic, quote or other representation about a product or service should be verified with the manufacturer, provider or party in question.
This blog does not contain any content which might present a conflict of interest.
To get your own policy, go to http://www.disclosurepolicy.org
my little sister
She just had her first baby. Baby was born 5 weeks early and is a good weight of 5 pounds 11 ounces However the baby was born with horseshoe kidneys and other issues. He was born with 6 toes on each foot and when he was born couldnt breathe on his own due to his nose being flat. That has resolved and now he is breathing. He also has a flat mandible(lower jaw) and his ears are low. They are doing genetic testing to see w hat they can figure out.
please pray for t his little bo y.
please pray for t his little bo y.
Wednesday, February 7, 2007
kids
Well..what a day. My kids are warped I tell you warped I tell you. Here they are getting ready for a bath and they are butting bums together. WEIRDOS!THey were giggling so loud and just beging hysterical.
kiara
Well we went to see the pediatrician last week. Whatever disease kiara has is progressing into more. The fevers are minimal however the arthralgia is more severe. Kiaras bone age is about a year and 5 months ahead of her actual age. So that is something they will keep watching. Her ovary on the right side was definitely affected by the appendix so we will see if she has fertility problems later on in life.
We return to the states in a few months and will see what progresses from there.
We return to the states in a few months and will see what progresses from there.
Sunday, January 28, 2007
yawnnn..
Tired and sick thats what this house is all about. I am trying to study and it just isnt going well. I am very tired. Isnt life grand lol
Tuesday, January 23, 2007
Morning of January 23
YAWN
I am so tired. I cant believe I just did another 8 hours of work. I am so tired of always working nights but its better then being broke. There most likely will be a night shift tonight but i dont want it or I could work an E2 but no thanks. I did tell them I will work tomorrow if they need me to.
We have 2 residents dying and its just so draining. i need a break.
Kiara and Kristian are still asleep.. yayy. maybe I will get a couple hours of sleep.
Should almost sit and read for a bit..
I am so tired. I cant believe I just did another 8 hours of work. I am so tired of always working nights but its better then being broke. There most likely will be a night shift tonight but i dont want it or I could work an E2 but no thanks. I did tell them I will work tomorrow if they need me to.
We have 2 residents dying and its just so draining. i need a break.
Kiara and Kristian are still asleep.. yayy. maybe I will get a couple hours of sleep.
Should almost sit and read for a bit..
Monday, January 22, 2007
work work work
Left work last night and had that feeling that I would be called in to work tonight. Sure enough.... I was.. LOL
Another day another dollar lol
We are losing a resident so work is steady ...makes the night fly past!
Another day another dollar lol
We are losing a resident so work is steady ...makes the night fly past!
Sunday, January 21, 2007
Sunday Morning
I have returned from the land of work. LOL
Its 8 am and I am home from work and got to get the family up soon for church. We are going to small group and then home to sleep lol
Kiara and Kristian will be going to sunday school and junior church .. bless their little hearts. Maybe we will try and go skating today. I dont know.
Well. off i go.
laters
Its 8 am and I am home from work and got to get the family up soon for church. We are going to small group and then home to sleep lol
Kiara and Kristian will be going to sunday school and junior church .. bless their little hearts. Maybe we will try and go skating today. I dont know.
Well. off i go.
laters
Friday, January 19, 2007
Friday January 19, 2007
Well I finally heard back from NIH. Time to stop the injections and see if we keep her ears clear. I wonder if the enbrel is truely the right medication. i also wonder if she truely has a fever disorder or something else.
Oh well lets see what this does.
My kids are fighting of course lol, so Im going for a bit
Oh well lets see what this does.
My kids are fighting of course lol, so Im going for a bit
Thursday, January 18, 2007
Well
Ive added this amazing site and think that this will be a good way for me to think. I have also added the christian blogging alliance and am very excited to be a part of this amazing and thoughtful group. thanks to my friends who informed me of this.
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