lots of little stuff
>> Tuesday, September 13, 2011
Sorry for the infrequent posts lately. There doesn't seem to be a lot of flow to my days lately, and news about Noah tends to happen in bits and spurts. When there have been problems, it's been faster to quickly post on Facebook . . . but I'm going to try to keep more current here (and I never mind "friending" blog readers on FB if that's easier for you).
The highlight of Noah's week was seeing a Blackhawk helicopter and a traveling Vietnam Wall on Friday. He doesn't get to do a lot of "field trips," so this was a pretty big deal to him. The Wall was here for a few days, and there were a lot of related activities going on in town. On Friday, a Blackhawk flew in for a few hours.
We were there to see it land . . .
and some of the children even got to sit inside!
A tired but excited Noah got to sit in the cockpit. I didn't think I could get him in there with all of his pumps and bags, but a kind soldier saw Noah craning his neck to see the cockpit through the crowd. He cleared a path and helped lift Noah into the helicopter. It's not the best picture, but it's what we could get. :-)
After we finished with the Blackhawk, we drove over to the wall. My dad served bravely in Vietnam, and my uncle died there, so we went with my mom to put flowers and a picture by my uncle's name. One of the soldiers at the Wall said that he would personally take the photo to the big Wall in DC when this Wall was taken down.
I managed to capture this photo of Noah's reflection behind my uncle's name and the flowers.
Another biggie was Noah's first real day of homeschool K5 last week! We're using a sweet, gentle Mennonite curriculum (Rod and Staff) for him. It's just the right pace, and while it starts off very slowly, it should provide just enough of a challenge for him without overwhelming or tiring him. He was very proud of himself, and I was even more proud!!
Noah has had some challenges this week. He's had some labs that weren't good at all. His prealbumin, which should be over 20, is down to 9.9. This is a marker for protein and nutritional status. This very low number could be the result of kidney, liver, or bone marrow issues. He also had a 24 hour period where his urine output was WAY down, and he gained 1.6 lbs during that time. We made some adjustments to his fluid intake, and he managed to pee off all of that fluid (the 1.6 lbs - not all that he's gained). Fluid gain like that can be caused by low prealbumin, so there could very well be a relation between that episode and his labs. There's obviously something (or somethings) going on, but no one is sure what yet.
We've had car drama too. The battery on the bus died last week, and Jeff used the minivan to jump it. The charge on the bus battery didn't last, so Jeff took it to Advanced Auto for a slow charge. While the bus battery was in the shop, the battery on the minivan died - it was an old battery and apparently jumping the bus was just too much.
The bus battery simply wouldn't hold a charge, and we only had money for one battery, so we got a battery for the bus since that is the vehicle with the wheelchair lift and it's the vehicle that's big enough for all of the children. That night (Saturday) a friend took the minivan battery home to put on his charger all night in the hopes that we could bring it back to life.
We got up Sunday morning to lots of craziness - a nurse from hospice needed to come by and check out Noah because of the fluid issues, so I was going to stay home with Noah while Jeff took the other children to church in the bus. They all ran out the door, and 2 minutes later they all came trudging back in - our brand new bus battery was dead due to a dead alternator. Sigh. Now we had TWO dead vehicles.
We got a call from our battery-charging friend a couple of hours later - he said he'd dropped off the battery for the minivan. He must have a VERY special charger, because the minivan battery he dropped off was brand new! :-)
It's a huge relief to have a working minivan. We can't go anywhere as a family, and Noah can't ride in it in his wheelchair, BUT we can get Noah to the doctor or anywhere else he needs to go if needed. In the meantime, we're confident that the Lord will provide the money for that new alternator. (We've had some extra expenses lately including very high electric bills for the air conditioning Noah needs, and some other bus repairs combined with the new bus battery depleted Noah's funds almost completely.) We're very thankful that the bus battery was able to be re-charged, so we won't need another new battery - just the alternator.
Things are continuing to work out well with hospice. Noah LOVES his new CNA, and I love having her here twice a week. We've increased his IV methadone a couple of times and are getting closer to the pain control we need.
He and I have had lots of extra snuggles lately. His appetite for books has grown - I guess that wasn't the best wording considering that it's Noah we're talking about - what I mean to say is that he is really loving being read to lately. It's not unusual for him to listen to a dozen or more books all in one sitting. We're working through The Big Picture Bible Story Book right now and he LOVES it - he calls it his "God book" and always wants one more chapter. :-) When we finish that one, we're going to go through the Jesus Storybook Bible, which has a bit more detail.
We SO appreciate all of your prayers, comments, emails, notes, etc. Some days are so unspeakably hard, but there are bright spots throughout. We'd appreciate prayers for wisdom right now. It would be to Noah's benefit to have a hospital bed at this point. He is NOT bedridden at all, but he does spend a lot of time lying down and resting, which would be more comfortable in an adjustable bed. It would also help me - he needs to be changed about every 2 hours, needs sponge baths between his big baths, etc. and this old back doesn't appreciate bending over my bed for all of those things. Having a bed that raises up would make the daily linen changes, the many daily diaper changes, the daily procedures, etc. all SO much easier.
Getting the bed isn't a problem, but finding space for it could be. The 5 boys share a room that isn't very big. There are two bunk beds against two walls with Noah's (getting too small) toddler bed between them. We're having a home evaluation tomorrow by someone from our DME - he should be able to see if there is a way to fit the bed in the boys room or into our room if needed. We don't want to put the bed in the living room - it's too far from our bedroom for us to hear his alarms in the night, and since we just have one living room, we'd have to shut down family time each night when he goes to bed. We'd really appreciate prayers that we could find a solution. Prayers for an alternator and of course for Noah himself would also be a deeply appreciated.
Blessings,
Kate
The highlight of Noah's week was seeing a Blackhawk helicopter and a traveling Vietnam Wall on Friday. He doesn't get to do a lot of "field trips," so this was a pretty big deal to him. The Wall was here for a few days, and there were a lot of related activities going on in town. On Friday, a Blackhawk flew in for a few hours.
We were there to see it land . . .
and some of the children even got to sit inside!
A tired but excited Noah got to sit in the cockpit. I didn't think I could get him in there with all of his pumps and bags, but a kind soldier saw Noah craning his neck to see the cockpit through the crowd. He cleared a path and helped lift Noah into the helicopter. It's not the best picture, but it's what we could get. :-)
After we finished with the Blackhawk, we drove over to the wall. My dad served bravely in Vietnam, and my uncle died there, so we went with my mom to put flowers and a picture by my uncle's name. One of the soldiers at the Wall said that he would personally take the photo to the big Wall in DC when this Wall was taken down.
I managed to capture this photo of Noah's reflection behind my uncle's name and the flowers.
Another biggie was Noah's first real day of homeschool K5 last week! We're using a sweet, gentle Mennonite curriculum (Rod and Staff) for him. It's just the right pace, and while it starts off very slowly, it should provide just enough of a challenge for him without overwhelming or tiring him. He was very proud of himself, and I was even more proud!!
Noah has had some challenges this week. He's had some labs that weren't good at all. His prealbumin, which should be over 20, is down to 9.9. This is a marker for protein and nutritional status. This very low number could be the result of kidney, liver, or bone marrow issues. He also had a 24 hour period where his urine output was WAY down, and he gained 1.6 lbs during that time. We made some adjustments to his fluid intake, and he managed to pee off all of that fluid (the 1.6 lbs - not all that he's gained). Fluid gain like that can be caused by low prealbumin, so there could very well be a relation between that episode and his labs. There's obviously something (or somethings) going on, but no one is sure what yet.
We've had car drama too. The battery on the bus died last week, and Jeff used the minivan to jump it. The charge on the bus battery didn't last, so Jeff took it to Advanced Auto for a slow charge. While the bus battery was in the shop, the battery on the minivan died - it was an old battery and apparently jumping the bus was just too much.
The bus battery simply wouldn't hold a charge, and we only had money for one battery, so we got a battery for the bus since that is the vehicle with the wheelchair lift and it's the vehicle that's big enough for all of the children. That night (Saturday) a friend took the minivan battery home to put on his charger all night in the hopes that we could bring it back to life.
We got up Sunday morning to lots of craziness - a nurse from hospice needed to come by and check out Noah because of the fluid issues, so I was going to stay home with Noah while Jeff took the other children to church in the bus. They all ran out the door, and 2 minutes later they all came trudging back in - our brand new bus battery was dead due to a dead alternator. Sigh. Now we had TWO dead vehicles.
We got a call from our battery-charging friend a couple of hours later - he said he'd dropped off the battery for the minivan. He must have a VERY special charger, because the minivan battery he dropped off was brand new! :-)
It's a huge relief to have a working minivan. We can't go anywhere as a family, and Noah can't ride in it in his wheelchair, BUT we can get Noah to the doctor or anywhere else he needs to go if needed. In the meantime, we're confident that the Lord will provide the money for that new alternator. (We've had some extra expenses lately including very high electric bills for the air conditioning Noah needs, and some other bus repairs combined with the new bus battery depleted Noah's funds almost completely.) We're very thankful that the bus battery was able to be re-charged, so we won't need another new battery - just the alternator.
Things are continuing to work out well with hospice. Noah LOVES his new CNA, and I love having her here twice a week. We've increased his IV methadone a couple of times and are getting closer to the pain control we need.
He and I have had lots of extra snuggles lately. His appetite for books has grown - I guess that wasn't the best wording considering that it's Noah we're talking about - what I mean to say is that he is really loving being read to lately. It's not unusual for him to listen to a dozen or more books all in one sitting. We're working through The Big Picture Bible Story Book right now and he LOVES it - he calls it his "God book" and always wants one more chapter. :-) When we finish that one, we're going to go through the Jesus Storybook Bible, which has a bit more detail.
We SO appreciate all of your prayers, comments, emails, notes, etc. Some days are so unspeakably hard, but there are bright spots throughout. We'd appreciate prayers for wisdom right now. It would be to Noah's benefit to have a hospital bed at this point. He is NOT bedridden at all, but he does spend a lot of time lying down and resting, which would be more comfortable in an adjustable bed. It would also help me - he needs to be changed about every 2 hours, needs sponge baths between his big baths, etc. and this old back doesn't appreciate bending over my bed for all of those things. Having a bed that raises up would make the daily linen changes, the many daily diaper changes, the daily procedures, etc. all SO much easier.
Getting the bed isn't a problem, but finding space for it could be. The 5 boys share a room that isn't very big. There are two bunk beds against two walls with Noah's (getting too small) toddler bed between them. We're having a home evaluation tomorrow by someone from our DME - he should be able to see if there is a way to fit the bed in the boys room or into our room if needed. We don't want to put the bed in the living room - it's too far from our bedroom for us to hear his alarms in the night, and since we just have one living room, we'd have to shut down family time each night when he goes to bed. We'd really appreciate prayers that we could find a solution. Prayers for an alternator and of course for Noah himself would also be a deeply appreciated.
Blessings,
Kate
Posts
