Had to share a little bit about Andrew. Since I made the last post I have changed how we feed Andrew. The kid needs some meat on his bones. Because of this we had gone to pretty much straight tube feedings last summer. Well that didn't work, the kids still skinny, skinny.
So I decided to see how Andrew would do eating orally; more than just the pudding we have been giving him. So starting last week I started pureeing what we are having for supper and sending it with him to school for lunch. The kid is gobbling it up. He gets more calories in that lunch than he does in a can of pediasure and enjoys it so much more. His teacher emailed me today saying how well he's been doing. So I'm going to keep trying to push it here at home as well. We have both been getting up a half hour earlier so I have time to feed him before school. Of course I can always fall back on the tube feeds and will continue to supplement a couple of cans a day. The big thing is to get a minimum of 1100 calories per day.
I also tried out the straw again. Andrew took a few swallows of hot chocolate before he decided it was too much work. I'm out of "Thick It" so have some on order at Walmart. I think he'll do better with that.
Also, Andrew's teacher sent home 3 more sight words so he's now up to 18 words. He is testing 100% with the 15 so of course he needs to learn more. He gets really excited when it's time to work on his flash cards. He smiles and likes to look at the word and then look away quick and then back. Guess he's making sure it's still there. (Wish I knew what is going on his head). He's also working on simple addition and seems to be doing well with that.
Have a blessed week.
Monday, January 26, 2009
Monday, January 19, 2009
Andrew's year
There doesn't seem to be much happening around here. The boys are back in school tomorrow and hopefully we will have no more snow days. Planning for Scouts is starting to pick back up as we have several big events coming up in the next few months. I have to say that I am greatful to the upcoming leadership with the Pack committee. I am beginning to feel comfortable with stepping back and letting others take over. Which is big for me.
Andrew had his annual physical today. It was pretty uneventful as far as "his" physcials go. The main topics covered his GERD, seizures, sleep apnea, bowel movements (always pleasant) and his hamstrings. He also has some hearing loss going on which I'm not prone to do anything about as long it isn't a physical issues (wax, etc). With all the other stuff the hearing seems relatively minor and he seems to hear ok to me. I'm not sure what we would do about it anyway. He's already so sensitive to noises, which are also major seizure triggers for him.
So lets go down the list:
GERD (reflux)- We are having issues. Mainly because Andrew's mom is a dunce and lost the script from Dr Bishop for the Prevacid. So Dr W called in a new order which of course wasn't covered b/c it was a different dose and different dr so it nullified the prior authorization. *sigh So Loren called me from the pharmacy tonight because they wanted $300 for a 30 day supply of Prevacid. NOT!!! I was able to talk to the pharmacist and got that straightened out and hopefully we can get the reflux back under control. Although my friend Dawyn who happened to be a PA in Dr Bishops office and who now lives in a Alaska told me a wonderful secret.... Mylanta works wonders for the quick short-term relief of the GERD. So a quick 2 tablespoons through his Mic-Key gives some relief. (and yes, that is 10 pts for bad mom of the year).
seizures- They're baaaack! Yes, after a year and a half vacation Andrew's seizures have returned. I've been pretty hush hush about them because they don't seem too bad at this point, but they've been around since about September. He's having 1 to 4, 8-15 second myoclonics per day. Which is still much much better than what they used to be. We don't want to make any changes in his meds right now. I am not scared by this seizure monster, I am more scared of the meds at this point. We will re-evaluate if he starts having tonics that increase in number or if the TC (tonic-clonic/grand mal) start back up. At his worst Andrew was having up to 80 myoclonics, tonics and TC seizures per day.
sleep apnea- Dr W and I spoke at length about my concerns about Andrew's sleeping on his back. The thing is, that he sleeps on his tummy and wakes very quickly (30-45 minutes) if he rolls onto his back. We both agree it's probably because his airway is so floppy and he has to fight with his tongue falling back into his throat. Dr. W is more than willing to do a sleep study but I would like to hold off for a little while.
bowel movements- Will probably never get them the way they should be consistantly. Enough said.
hamstrings- They are so so tight and they make me sad. The hamstrings are the symbol (to me) of Andrew's not walking or sitting or even scooting. Dr Dietz wants to put any kind of hamstring lengthening off as long as possible. Preferably after Andrew hits puberty. It is starting to get difficult for me to get Andrew into his chair though. His legs cross and his feet get hung up under his butt when I put him in, add that to the thrusting and I need about another 2 arms to add to the eight I already have. I'll discuss this with Dr Dietz in April.
Ok, I think that covers the list. All in all it wasn't a bad appointment. I was pretty happy, no surprises and I didn't leave in tears. All of which is major progress over the last eight years.
So here's to another year!!! May this next one be better than the last.
Andrew had his annual physical today. It was pretty uneventful as far as "his" physcials go. The main topics covered his GERD, seizures, sleep apnea, bowel movements (always pleasant) and his hamstrings. He also has some hearing loss going on which I'm not prone to do anything about as long it isn't a physical issues (wax, etc). With all the other stuff the hearing seems relatively minor and he seems to hear ok to me. I'm not sure what we would do about it anyway. He's already so sensitive to noises, which are also major seizure triggers for him.
So lets go down the list:
GERD (reflux)- We are having issues. Mainly because Andrew's mom is a dunce and lost the script from Dr Bishop for the Prevacid. So Dr W called in a new order which of course wasn't covered b/c it was a different dose and different dr so it nullified the prior authorization. *sigh So Loren called me from the pharmacy tonight because they wanted $300 for a 30 day supply of Prevacid. NOT!!! I was able to talk to the pharmacist and got that straightened out and hopefully we can get the reflux back under control. Although my friend Dawyn who happened to be a PA in Dr Bishops office and who now lives in a Alaska told me a wonderful secret.... Mylanta works wonders for the quick short-term relief of the GERD. So a quick 2 tablespoons through his Mic-Key gives some relief. (and yes, that is 10 pts for bad mom of the year).
seizures- They're baaaack! Yes, after a year and a half vacation Andrew's seizures have returned. I've been pretty hush hush about them because they don't seem too bad at this point, but they've been around since about September. He's having 1 to 4, 8-15 second myoclonics per day. Which is still much much better than what they used to be. We don't want to make any changes in his meds right now. I am not scared by this seizure monster, I am more scared of the meds at this point. We will re-evaluate if he starts having tonics that increase in number or if the TC (tonic-clonic/grand mal) start back up. At his worst Andrew was having up to 80 myoclonics, tonics and TC seizures per day.
sleep apnea- Dr W and I spoke at length about my concerns about Andrew's sleeping on his back. The thing is, that he sleeps on his tummy and wakes very quickly (30-45 minutes) if he rolls onto his back. We both agree it's probably because his airway is so floppy and he has to fight with his tongue falling back into his throat. Dr. W is more than willing to do a sleep study but I would like to hold off for a little while.
bowel movements- Will probably never get them the way they should be consistantly. Enough said.
hamstrings- They are so so tight and they make me sad. The hamstrings are the symbol (to me) of Andrew's not walking or sitting or even scooting. Dr Dietz wants to put any kind of hamstring lengthening off as long as possible. Preferably after Andrew hits puberty. It is starting to get difficult for me to get Andrew into his chair though. His legs cross and his feet get hung up under his butt when I put him in, add that to the thrusting and I need about another 2 arms to add to the eight I already have. I'll discuss this with Dr Dietz in April.
Ok, I think that covers the list. All in all it wasn't a bad appointment. I was pretty happy, no surprises and I didn't leave in tears. All of which is major progress over the last eight years.
So here's to another year!!! May this next one be better than the last.
Thursday, January 15, 2009
it is COLD
According to the National Weather Service it is now -24 with a windchill of -51. IMHO it is too cold to do much of anything. But alas, I must go to work today. I stayed home for the "snow" day yesterday, today is Loren's turn.
Aaron digging his snow cave.
Gotta love those red cheeks. He did manage to get himself a cup of hot chocolate, compliments of mom.
Aaron digging his snow cave.
Gotta love those red cheeks. He did manage to get himself a cup of hot chocolate, compliments of mom.
Yes, we stayed home yesterday but I'm not sure we accomplished much. Despite my best effort, at times I have difficulty getting my butt out of this chair. I did get to work on some of my clutter issues though. See, I'm making progress.
Before you can organize, you must sort. So I guess that's what's happening.
Tuesday, January 13, 2009
Saturday, January 10, 2009
Sometimes Miracles Hide
When Andrew was about 6 months old, one of his Early Childhood workers gave me a book and cd called "Sometimes Miracles Hide" by Bruce Carroll. I have since recommended that book to other friends and family as they experience the birth of a special needs child.
It came to mind as I was unpacking today that I would like to add the song to my playlist, but it's not there. So I checked Youtube and found it.
"God will wrap some blessings in disguise, You may have to wait this lifetime, To see the reasons with your eyes... 'Cause sometimes miracles hide."
technical difficulties
I guess you cannot edit a YouTube post once it's been posted. How frustrating.
Taking the plunge
The following pictures are not for the weak at heart. Anybody who knows me, knows that I am an absolute slob. Yep, wherever things land is where they stay. We moved into this house in October, and I already have clutter piles. So I'm taking the plunge and going to get organized. I'm joining Laura over at "I'm an Organizing Junkie".
Below are my before pictures. On January 31, I better be posting my after pictures. So keep me accountable and check back to see if I can make the challenge.
This month is filing.
Below are my before pictures. On January 31, I better be posting my after pictures. So keep me accountable and check back to see if I can make the challenge.
This month is filing.
Friday, January 09, 2009
where am I going?
I don't know where the Lord is leading me, but it must be someplace special. I've been working with adults who have disabilities for 20 years (ouch, I'm getting old). That means I started 12 years before Andrew was even born (I did take a 4 year break when Andrew was born). So surely this is my ministry for now, to work with those who have such severe physical and mental disabilities.
Thursday, January 08, 2009
He's Alive
After returning to the hum drum of life after Christmas I always feel let down. Last night, after running some errands, Loren, Aaron and I stopped to eat at Texas Roadhouse. I then had the opportunity to go shopping by myself so stopped to pick up a few things at Gordman's and Bed, Bath and Beyond (I could spend alot of money there).
Anyway, I pulled out a very old CD because I was just tired of the same old, same old and "He's Alive" came on. The crescendo as it went through the van was awesome and it was so moving to me at that time. I just wanted to share it. You'll need to pause the playlist.
Sunday, January 04, 2009
lessons learned
1. Never leave home without your cell phone.
2. If it looks icy and is cold = it's icy and stay home
3. Don't send your son to run home and get help when you can't make it up the hill. He's likely to fall and get all scraped up.
4. We have some very very nice neighbors.
Yep, we left for church and didn't make it a quarter mile up the road. I couldn't make it up the hill and when I started to back down I was scared I'd slide in the ditch. So, after I sent Aaron home to get Loren some very nice neighbors stopped with sand and helped me turn around and get home.
This is what happens when you actually have a garage that you can put your vehicles into. You don't have to chip off the ice so you don't know how bad it is. lol
Andrew was VERY disappointed that we didn't make it to church. He's been stuck in the house a few days and I think was looking forward to getting out. He's been fussy since we got home.
Have a great day!
2. If it looks icy and is cold = it's icy and stay home
3. Don't send your son to run home and get help when you can't make it up the hill. He's likely to fall and get all scraped up.
4. We have some very very nice neighbors.
Yep, we left for church and didn't make it a quarter mile up the road. I couldn't make it up the hill and when I started to back down I was scared I'd slide in the ditch. So, after I sent Aaron home to get Loren some very nice neighbors stopped with sand and helped me turn around and get home.
This is what happens when you actually have a garage that you can put your vehicles into. You don't have to chip off the ice so you don't know how bad it is. lol
Andrew was VERY disappointed that we didn't make it to church. He's been stuck in the house a few days and I think was looking forward to getting out. He's been fussy since we got home.
Have a great day!
Subscribe to:
Posts (Atom)
