Good Morning All! Alex's eye exam went well even though his vision has deteriorated since last October. That may sound strange but the doc assured us that nothing new is causing these symptoms. He wants to see Alex in 30 days to track this situation though. I was so relieved to hear that his optic nerve was fine! I immediately felt my shoulders relax.
STeve made it home early Saturday morning and somehow made it to the Pancake Breakfast with a smile on his face. The event was a great success! It was so great to see everyone- new and old friends! Everyone had a great time and Alex went to the face painter's tent three times! Until last night Alex still had spider makeup on his face!! I want to thank Sara and her team for doing such a great job! It really was fun!!
So a new week starts this week. Alex is having headaches; loss of appetite (He told us Friday "Mom I think I have two appetites left!"); drool; and some dizziness but not too much. So overall-in the grand scheme of things-knowing it can ALWAYS be worse- Alex is doing pretty well coming off the steroids. Today we begin the wean from the cortisone. Fingers crossed!
In case you were wondering my comma key is broken so my punctuation is off in this post!! It is driving me mad!!
Oh well how grand it is to be mad a keyboard today! Have a great day! God Bless!
G
Monday, August 06, 2007
Wednesday, August 01, 2007
Wednesday, August 1st-Hump Day
Better day after bad night. Alex was completely restless due to several factors, constipation being the most prevalent issue. I think it had something to do with sitting in a hospital bed all day yesterday. Seriously, we were at the hospital from 9:30a to 5:30p! The day started with a consult/eval by the rehab supervisor to review Alex's needs to resolve his choking, drool, swallow and sleep issues. She wants to do another swallow study and a sleep study. Dr. F only thinks the swallow study is necessary and that the sleep issues (apnea, which he does not have, and I told them this several times) will resolve itself with the weight loss and a longer duration of time from radiation.
Today, Alex and I were at the hospital at 9a for OT. His therapist introduced him to a new tool that has several stubby sides and different vibration settings. She used it to get Alex to move his tongue around and feel different parts of his mouth. Alex's drool is quite significant and even though he was tired and miserable, he did the exercises when I told them they would help him with his choke and his drool. What a wonderful kid huh?
Then we went to the clinic. They were very busy and Alex was so dizzy that he asked to lay down on the exam table. The doc came in and said that we are to accept the dizziness, the choking, the double vision but not any new symptoms such as unconsciousness, vomiting, and/or increased weakness on right side. Isn't that just what you want your doc to say to you, about your kid?
Luckily, they sent us home and we picked ZG up early from school to come home and have a long, long nap. Then we had a play date with Ms. Katharine, Master Nicholas and their mom, Jo-Nell. Alex was so excited about having friends over! I'm glad I did not flake out and just blob out on the couch, like I felt like doing. Instead I got up from nap, cleaned the house quickly (the only way to do it) and ordered Thai food! We had a great visit and everyone seemed to enjoy themselves. Katharine and Alex have been friends since he was 4 months old. She had a lot of very good questions and Alex even tried to walk by himself while she was here. He ended up holding one of my hands, but he did it!! I wanted to do a happy dance and cry but I kept it in!
Okay, well tomorrow is a well timed eye exam by one of the best pediatric eye docs around town. He knows Alex and has examined him since June 2006 (even before we knew about the bump). I am anxious to hear what he has to say. Alex's eyes sometimes get jerky/fluttery when he tries to track something. This would make me dizzy too! I know eye movements are controlled by the brain stem but Dr. F does not know why he would be having blurry vision. So that is where my anxiety lies. What if there is something on his optic nerve? What if it is T3? How dear God would I handle that news? We are so close to our breaking point now!!
On that note, I just want to say that even though I post blogs like Monday's. Somehow when push comes to shove, I am up and ready for the day when I am called upon. I think it is due to my absolute will to beat this; or my resolve to continue to support Alex in everything we have to go through. No matter how bad I feel, I just imagine (or try to imagine) what it is like for a 4 year old child to deal with every day. I also know that every positive thought sent our way helps my molecules gain energy and get my butt out of bed!
So thank you! God bless you!
G
Today, Alex and I were at the hospital at 9a for OT. His therapist introduced him to a new tool that has several stubby sides and different vibration settings. She used it to get Alex to move his tongue around and feel different parts of his mouth. Alex's drool is quite significant and even though he was tired and miserable, he did the exercises when I told them they would help him with his choke and his drool. What a wonderful kid huh?
Then we went to the clinic. They were very busy and Alex was so dizzy that he asked to lay down on the exam table. The doc came in and said that we are to accept the dizziness, the choking, the double vision but not any new symptoms such as unconsciousness, vomiting, and/or increased weakness on right side. Isn't that just what you want your doc to say to you, about your kid?
Luckily, they sent us home and we picked ZG up early from school to come home and have a long, long nap. Then we had a play date with Ms. Katharine, Master Nicholas and their mom, Jo-Nell. Alex was so excited about having friends over! I'm glad I did not flake out and just blob out on the couch, like I felt like doing. Instead I got up from nap, cleaned the house quickly (the only way to do it) and ordered Thai food! We had a great visit and everyone seemed to enjoy themselves. Katharine and Alex have been friends since he was 4 months old. She had a lot of very good questions and Alex even tried to walk by himself while she was here. He ended up holding one of my hands, but he did it!! I wanted to do a happy dance and cry but I kept it in!
Okay, well tomorrow is a well timed eye exam by one of the best pediatric eye docs around town. He knows Alex and has examined him since June 2006 (even before we knew about the bump). I am anxious to hear what he has to say. Alex's eyes sometimes get jerky/fluttery when he tries to track something. This would make me dizzy too! I know eye movements are controlled by the brain stem but Dr. F does not know why he would be having blurry vision. So that is where my anxiety lies. What if there is something on his optic nerve? What if it is T3? How dear God would I handle that news? We are so close to our breaking point now!!
On that note, I just want to say that even though I post blogs like Monday's. Somehow when push comes to shove, I am up and ready for the day when I am called upon. I think it is due to my absolute will to beat this; or my resolve to continue to support Alex in everything we have to go through. No matter how bad I feel, I just imagine (or try to imagine) what it is like for a 4 year old child to deal with every day. I also know that every positive thought sent our way helps my molecules gain energy and get my butt out of bed!
So thank you! God bless you!
G
Tuesday, July 31, 2007
Tuesday, July 31st-Missing Mike.
Okay, so yesterday was REALLY hard. I have so much anxiety about this week. Alex choked on his pasta last night and quit eating. This morning he is dizzy and now lying down before we head to the hospital. The doc did not keep him all day yesterday because typically his symptoms don't show up for a few days after he stops the steroids (Sunday). So we will be spending the day there today and perhaps tomorrow.
Today is Steve's Dad's birthday. This is the first time in 4 years that we have not been together on this day. We miss Mike very much and are sad to be without him today (and everyday).
Alex and ZG are already missing Dad (on a biz trip). And I must say I am too!! I need prayers and strength to make it.
Thanks in advance!
G
Today is Steve's Dad's birthday. This is the first time in 4 years that we have not been together on this day. We miss Mike very much and are sad to be without him today (and everyday).
Alex and ZG are already missing Dad (on a biz trip). And I must say I am too!! I need prayers and strength to make it.
Thanks in advance!
G
Monday, July 30, 2007
Monday, July 30th-Hard Weekend
Good Morning, though I don't feel that way. Alex had some vision issues over the weekend, dizziness, blurriness, double and was put back on a small dose of decadron. AUGHHH! And he has to spend the day at the clinic under observation. AUGHHH! Needless to say STeve and I are just beat down at this point. So exhausted, beyond physical.
Okay, pray please.
GB, G
Okay, pray please.
GB, G
Friday, July 27, 2007
Friday, July 27th - Update and Benefit Info
Happy Bday Janey!!
So Alex is one day off the dexamethasone. So far he is doing okay. His drool is bad and I had his dad introduce the "man's handkerchief" to him this morning. I think he likes the concept since he has held onto it so far. Our main concern now is getting his weight down. He's over 53 pounds and feels terrible. The steroids have weakened his muscles in addition, so walking is very difficult at this time.
Alex is looking forward to the Pancake Breakfast because he LOVES pancakes!! Also, because it is a party and he LOVES parties! I hope we get to see as many of you as possible there! If you want information on the event, please call Sara at 303.517.5211 and she will give you all of the details.
Okay, well that's the short and sweet of it. Have a wonderful weekend!
God bless!
G
So Alex is one day off the dexamethasone. So far he is doing okay. His drool is bad and I had his dad introduce the "man's handkerchief" to him this morning. I think he likes the concept since he has held onto it so far. Our main concern now is getting his weight down. He's over 53 pounds and feels terrible. The steroids have weakened his muscles in addition, so walking is very difficult at this time.
Alex is looking forward to the Pancake Breakfast because he LOVES pancakes!! Also, because it is a party and he LOVES parties! I hope we get to see as many of you as possible there! If you want information on the event, please call Sara at 303.517.5211 and she will give you all of the details.
Okay, well that's the short and sweet of it. Have a wonderful weekend!
God bless!
G
Wednesday, July 25, 2007
Wednesday, July 25th - No MRI
Hi, well I spoke to Dr. F today, just by chance since I was calling his nurse to find out the time of Monday's MRI. He had not heard about Alex's weekend so I gave him the update and told him we did not want another MRI but if he said it would be necessary we'd go ahead. He said that it was NOT necessary and that he would cancel it!!! YEAH, HOORAY, YEAH, HOORAY!!!
So that is great news around here. Alex was having alot of anxiety about the MRI. Unfortunately, I can't say that life is easy right now. Alex told me yesterday that he was mad that his drool was back. In addition, he has had some horrible choking episodes this week and we are all on alert whenever he eats. Today he was napping in the car and woke up choking. I thought I was going to have to stop the car to help him. We had to tell Alex to make lots of noise by banging on the dining table if he chokes and we are not right there. AUGHHHH!!! What a F'd up conversation to have with your kid!
So today we made it to Alex's play therapy appointment. She brought out a long piece of paper divided into three sections and asked if Mom could help with this project. Alex agreed then she told us we were going to list (write or draw) what life was like "before the bump", "with the bump" and "after the bump". I almost started crying right there. Alex absolutely would not discuss life before the bump. I think it was just too painful to remember how it "used to be". He finally started participating when we added "pasta and pancakes" to the current column.
Here are some of the list items:
Before:
Playground (with friends)
School
Baby Zoe
Yin Yang (dog that went to the farm)
Mom at work more
Dad at home then work (started new job)
Running and playing (with friends)
Local amusement park
Smiles (on Alex's face) =-)
Real baths
Bike
Baseball (Alex was a great batter)
Fighting the bump:
Puzzles
Not so many smiles =-/
PAIN
Hospital
Pills
Pasta and Pancakes
Coloring
Roxie
Two Year Old Zoe (picture shows Z taking puzzle pieces off table and onto floor!)
Mom home
Broviac Line
Transformer (walker)
Super Boot
After the bump:
Playground with friends
Running
Playing
Camping in mountains with the sun, moon and rivers
No Pills
No hospital
No PAIN
No Transformer
Outside more
Travel (to see cousins)
Baseball
Bike
Lots of smiles =-)
Walking and playing with Zoe
Riding the airplane ride at the amusement park
By the end of the session he was actually excited about taking the poster home and adding more things to the "after" column. It is now hanging in the hall.
Okay, well we will see Dr. F. tomorrow. Pray that all goes well. I have to say that Alex is not asking for as much pain meds since the last visit. Also pray that his symptoms go away and that he actually starts getting better like they promised!!!
We really need a break here.
God bless!
G
So that is great news around here. Alex was having alot of anxiety about the MRI. Unfortunately, I can't say that life is easy right now. Alex told me yesterday that he was mad that his drool was back. In addition, he has had some horrible choking episodes this week and we are all on alert whenever he eats. Today he was napping in the car and woke up choking. I thought I was going to have to stop the car to help him. We had to tell Alex to make lots of noise by banging on the dining table if he chokes and we are not right there. AUGHHHH!!! What a F'd up conversation to have with your kid!
So today we made it to Alex's play therapy appointment. She brought out a long piece of paper divided into three sections and asked if Mom could help with this project. Alex agreed then she told us we were going to list (write or draw) what life was like "before the bump", "with the bump" and "after the bump". I almost started crying right there. Alex absolutely would not discuss life before the bump. I think it was just too painful to remember how it "used to be". He finally started participating when we added "pasta and pancakes" to the current column.
Here are some of the list items:
Before:
Playground (with friends)
School
Baby Zoe
Yin Yang (dog that went to the farm)
Mom at work more
Dad at home then work (started new job)
Running and playing (with friends)
Local amusement park
Smiles (on Alex's face) =-)
Real baths
Bike
Baseball (Alex was a great batter)
Fighting the bump:
Puzzles
Not so many smiles =-/
PAIN
Hospital
Pills
Pasta and Pancakes
Coloring
Roxie
Two Year Old Zoe (picture shows Z taking puzzle pieces off table and onto floor!)
Mom home
Broviac Line
Transformer (walker)
Super Boot
After the bump:
Playground with friends
Running
Playing
Camping in mountains with the sun, moon and rivers
No Pills
No hospital
No PAIN
No Transformer
Outside more
Travel (to see cousins)
Baseball
Bike
Lots of smiles =-)
Walking and playing with Zoe
Riding the airplane ride at the amusement park
By the end of the session he was actually excited about taking the poster home and adding more things to the "after" column. It is now hanging in the hall.
Okay, well we will see Dr. F. tomorrow. Pray that all goes well. I have to say that Alex is not asking for as much pain meds since the last visit. Also pray that his symptoms go away and that he actually starts getting better like they promised!!!
We really need a break here.
God bless!
G
Monday, July 23, 2007
Monday, July 23rd-What a Weekend!
Good Morning. Wow, am I glad that is over! Let's start from the beginning. I got into a real FUNK Thursday afternoon. I think it was a premonition of things to come. Friday I went to work and spent a good portion of the day fighting with Steve. That just means loud voices (which I hate) and harsh words. Again, probably just because we had the time to finally fight about some things and to prepare ourselves for Saturday. Friday night we made amends and went to a concert at the local botanic gardens. It was a lovely evening but one of overindulgence and I paid that price as well.
So Saturday comes and we decide to do a pay-for-view of "The Last Mimzy" (good movie, not for four year olds) because Alex has a horrible headache that is not going away with the new Rx. Then Alex decides he wants to color while I make lunch. After just a few minutes, Alex is frustrated and shoves his coloring page away. I ask him "what is wrong". He replies, "My eyes are dizzy; I have double vision." Can you say OH SHIT? So off we go to the ER.
Double vision is a brand new neurological symptom and not something we want right now. Long story, longer. Alex has a CT (came back stable), they want an MRI but can't get a radiologist. Seems an MRI is a very political event and our doctor (who has the pull) is out of the country right now. So Alex may have one today or tomorrow. Alex has not reported more double vision since we came home, but I'm not so sure he would at this time anyway. His headaches continue though.
Our prayer now is that the double vision is caused by the headaches. We want to talk to Dr. F (returns tomorrow) before we do an MRI (just don't really know it is necessary) so I really don't know what this week holds in store for us.
In other news, Zoe had a wonderful weekend with her best friend and her folks. They took ZG at a moment's notice on Saturday and also Sunday afternoon. We had planned a family concert event but it was too hot for Alex to be outside so they took ZG to the event. I have to say I missed her though.
Okay, well that is all I really want to say at this time. Prayers welcome and appreciated!
God bless.
G
So Saturday comes and we decide to do a pay-for-view of "The Last Mimzy" (good movie, not for four year olds) because Alex has a horrible headache that is not going away with the new Rx. Then Alex decides he wants to color while I make lunch. After just a few minutes, Alex is frustrated and shoves his coloring page away. I ask him "what is wrong". He replies, "My eyes are dizzy; I have double vision." Can you say OH SHIT? So off we go to the ER.
Double vision is a brand new neurological symptom and not something we want right now. Long story, longer. Alex has a CT (came back stable), they want an MRI but can't get a radiologist. Seems an MRI is a very political event and our doctor (who has the pull) is out of the country right now. So Alex may have one today or tomorrow. Alex has not reported more double vision since we came home, but I'm not so sure he would at this time anyway. His headaches continue though.
Our prayer now is that the double vision is caused by the headaches. We want to talk to Dr. F (returns tomorrow) before we do an MRI (just don't really know it is necessary) so I really don't know what this week holds in store for us.
In other news, Zoe had a wonderful weekend with her best friend and her folks. They took ZG at a moment's notice on Saturday and also Sunday afternoon. We had planned a family concert event but it was too hot for Alex to be outside so they took ZG to the event. I have to say I missed her though.
Okay, well that is all I really want to say at this time. Prayers welcome and appreciated!
God bless.
G
Thursday, July 19, 2007
Thursday, July 19th
Hi Everyone. Well, Alex is doing okay. He has lost .2 kilograms and is handling his steroid decrease well. He is still having lots of pain and has started a new med used for nerve irritation pain. They use this drug to treat "phantom pain" in amputee victims. Alex has also had to start a cortisone drug because his body's ability to produce cortisone has been diminished by all of the steroids and he could go into shock without it. This will slow down his weight loss and either new drug can cause some BAD moods. Poor kid!
Besides that we are trying to get a play area built for Alex and Zoe in the back yard. We are frustrated with the process of working and paying for a landscape architect that has promised the moon to be delivered yesterday but so far we are at a standstill. Steve and I have come up with our own design and hopefully, things will get moving quickly! Alex just wants to play like and with kids and that is our priority at this time.
Unfortunately, the country club event had to be cancelled. There is talk or reviving it at a later date so stay tuned for that update. We'll just have to wait and see. The women planning the event are heart broken but reality is reality and the guests just were not there. I'm okay with all of this though and hope everyone can make it to the Pancake Breakfast on August 4th! It will be a great time.
Alex is spending his days coloring, cooking, and going to appointments. He loves play dates so if anyone wants to have one let me know!! Zoe Grace is growing taller everyday and still has that two-ness about her. She would love to play with Alex but he just can't stand for her to even touch him. It is a sad situation, but we try to come up with activities they both can enjoy. (read as: I can't wait for that play area!!!)
So far Steve and I are doing well on Slim 4 Life. I have lost 17.5 pounds and Steve is down 25 lbs! We lost almost two Zoes!!! The road is still a long one but we are getting used to the plan and the supplements are GREAT!!! (read as: we are wired all of the time!!) I definitely have more energy!
Okay, well I think that is it. One day at a time.
God bless.
G
Besides that we are trying to get a play area built for Alex and Zoe in the back yard. We are frustrated with the process of working and paying for a landscape architect that has promised the moon to be delivered yesterday but so far we are at a standstill. Steve and I have come up with our own design and hopefully, things will get moving quickly! Alex just wants to play like and with kids and that is our priority at this time.
Unfortunately, the country club event had to be cancelled. There is talk or reviving it at a later date so stay tuned for that update. We'll just have to wait and see. The women planning the event are heart broken but reality is reality and the guests just were not there. I'm okay with all of this though and hope everyone can make it to the Pancake Breakfast on August 4th! It will be a great time.
Alex is spending his days coloring, cooking, and going to appointments. He loves play dates so if anyone wants to have one let me know!! Zoe Grace is growing taller everyday and still has that two-ness about her. She would love to play with Alex but he just can't stand for her to even touch him. It is a sad situation, but we try to come up with activities they both can enjoy. (read as: I can't wait for that play area!!!)
So far Steve and I are doing well on Slim 4 Life. I have lost 17.5 pounds and Steve is down 25 lbs! We lost almost two Zoes!!! The road is still a long one but we are getting used to the plan and the supplements are GREAT!!! (read as: we are wired all of the time!!) I definitely have more energy!
Okay, well I think that is it. One day at a time.
God bless.
G
Wednesday, July 11, 2007
Wednesday, July 11th-Update
Hi. Oh geez, where to begin? Well let's just get caught up. Since last Wednesday, we have been to the clinic three times. twice for exams and yesterday because Alex was having a horrible headache that would not respond to OTC meds. They gave him some morphine and he felt much better. Seems that he just hit a wall as he was coming off the steroids. Either that or in my exhaustion, I mixed up his meds and gave him two Robinol instead of one Robinal and one mg of steroid. Alex has had some hard times lately. He has become very clingy at night and holds either mine or Steve's arm very tightly all through the night. He is so afraid of choking and the bad dreams. It is heart wrenching and makes sleep light at best.
Also, Alex has given us some clues into how he is doing mentally. The morning after the fireworks show, Alex told Steve that he was sad when he was there. Steve asked him why and he replied, "Cuz I just wanted to run and play (like the other kids)". Then we have noticed how much he does not want to go into the school to pick up or drop off Zoe. One day as his former classmates passed him, bouncing along, each one looked at Alex with awe and wonder, but none said "Hello". I know why he hates going in to the school. It is hard on Steve and I as well to see Alex's friends a year older, walking, talking and being normal. Just like we pray for Alex. It really shows you what you have lost. But I force myself to focus on what I have and just smile and get in and out asap. I don't think ill of the children at all! I really want everyone to understand that; I know these kids are great kids and they are behaving in a completely normal way to a very strange situation for them. It's strange for all of us!
Steve and I were talking last Monday night, when Alex was hospitalized and prior to the MRI, we were evaluating the situation and "checking in" as we call it. STeve said that he prays every night that Alex's suffering be put on him. I was aghast! NO!! Then we debated whether the Universe works that way. Is it an eye for an eye or can miracles happen? I was on the side of miracles. Especially since we have so many of you helping us along this journey!
Okay, let's end this on a good note. At the spur of the moment on Friday, Zoe and I headed to Aspen for a girls' weekend with her best friend and her best friend's mother. We stayed at an apartment owned by their Aunt and Uncle. It was a lovely trip and I have not seen Zoe so happy in a very long while. I hope to post her pic soon. The moms bonded while the girls played and fought and played some more. We came home Sunday, but the trip home was a long one and I needed a weekend from my weekend.
Another positive event was that Steve's friend, Rick is in town and took the family out to dinner last night. Alex was so excited to see Rick again (he loves company!!!) and was in rare form all evening. He wants to know everything about our days, plans, appointments, baby sitters, etc. He has asked me several times "who is going to watch us when you get your haircut?" I assume he needs to feel in control of something in his life. Everytime I pick up a phone, he asks "who are you calling?" I have to tell him who and why. This has yet to get exhausting but I bet it will soon!!
Okay, that is it. Alex is still on a high dose of steroids and at his highest weight ever, due to it. He has alot of trouble getting around, due to the leg / bone pain and extra weight as well. We go back tomorrow morning for another exam. Fingers crossed, but I can tell this is going to be a long, slow process.
God bless!
G
Thursday, July 05, 2007
Thursday, July 5th - He's Home!!! (and Phone # for Benefit)
Good Morning and Happy Bday Tracie!! Alex came home yesterday afternoon. YEAHHH! We see the doc tomorrow morning. Steve and I feel much lighter these days and it has nothing to do with the scale!! It really seems easier to breathe, sleep, be! We feel like we finally got a break!
I want each of you to know that your positive thoughts and prayers have made all the difference. I love reading the comments and getting a glimpse of others thoughts during this trial. Please don't stop now! Miracles still needed here!! But we are one miracle closer now!!
I also wanted to let you know that since I do not have everyone's email, if you would like to attend a fundraiser event, please call 303.709.7998 and leave a message. Someone will return your call promptly. As I mentioned earlier, there are two fundraisers coming up. The first is an adults only evening at the Lakewood Country Club on July 27th at 6p. This will be an evening of dinner and dancing and lots of fun! Next, on August 4th at 9a, there will be a Pancake Breakfast Fundraiser/Auction with all kinds of family oriented fun activities! It would be great to meet everyone at either of these events and to see old friends we have not seen in a long time too!! So please consider coming and call for information. Alot of lovely people are working very hard for dear Alex and we are so grateful to each of them.
Okay, well I hope everyone has a wonderful summer day! God Bless and Thank you!!
G
I want each of you to know that your positive thoughts and prayers have made all the difference. I love reading the comments and getting a glimpse of others thoughts during this trial. Please don't stop now! Miracles still needed here!! But we are one miracle closer now!!
I also wanted to let you know that since I do not have everyone's email, if you would like to attend a fundraiser event, please call 303.709.7998 and leave a message. Someone will return your call promptly. As I mentioned earlier, there are two fundraisers coming up. The first is an adults only evening at the Lakewood Country Club on July 27th at 6p. This will be an evening of dinner and dancing and lots of fun! Next, on August 4th at 9a, there will be a Pancake Breakfast Fundraiser/Auction with all kinds of family oriented fun activities! It would be great to meet everyone at either of these events and to see old friends we have not seen in a long time too!! So please consider coming and call for information. Alot of lovely people are working very hard for dear Alex and we are so grateful to each of them.
Okay, well I hope everyone has a wonderful summer day! God Bless and Thank you!!
G
Tuesday, July 03, 2007
Tuesday July3rd "Oh Happy Day!!!
Great news!!! It is just temporary swelling! No holes in brainstem, no tumor growth, just normal swelling due to dying tumor cells!!!
OH WHAT A FEELING!!! JOY JOY JOY!!!
Thank you all for your prayers!! Alex is still at the hospital and has had his first dose of decreased steroids (still an adult dose though). The doc wants to see what happens tonight. He may be sent home tomorrow. He may get a hospital bed to sleep in or a cpap (keeps air ways open while sleeping). Just don' t know right now.
Steve is with Alex now. I came home to see Ms. ZG. I miss her so and have not seen her since yesterday morning.
Oh, what a wonderful feeling. FINALLY, GOOD NEWS, A BREAK, A LIGHT AT THE END OF THE TUNNEL!!!
I'm going to go chill now and enjoy this moment!
God bless you all!!!
G
OH WHAT A FEELING!!! JOY JOY JOY!!!
Thank you all for your prayers!! Alex is still at the hospital and has had his first dose of decreased steroids (still an adult dose though). The doc wants to see what happens tonight. He may be sent home tomorrow. He may get a hospital bed to sleep in or a cpap (keeps air ways open while sleeping). Just don' t know right now.
Steve is with Alex now. I came home to see Ms. ZG. I miss her so and have not seen her since yesterday morning.
Oh, what a wonderful feeling. FINALLY, GOOD NEWS, A BREAK, A LIGHT AT THE END OF THE TUNNEL!!!
I'm going to go chill now and enjoy this moment!
God bless you all!!!
G
Monday, July 02, 2007
Monday, July 2nd, 12:11pm
The doc says Alex's symptoms are classic of brainstem neucrosis (sp?) (aka: dying due to radiation). Since the brainstem controls breathing and heart rate, he wants to monitor Alex over the next 24-48 hours. So Steve and Alex are at the hospital now waiting for the room to be prepared. Doc says Alex "looks good" (better than he expected) and is not that worried. He says the time to worry is if we are still dealing with this at 6-9 months. I think he backed off on his "alert level" because he could see how upset I was.
Alex will be in Room 550 at Children's. Feel free to call or come by later. If someone could bring a rocket ship that lights up and makes noises, Alex would be most appreciative. He saw one last night at a fireworks show and really, really wants one now. I'll pay you back!
I have been ordered to sleep. So I am going to rest now. Thank you all for your prayers. Keep them coming!!
God bless!
G
Alex will be in Room 550 at Children's. Feel free to call or come by later. If someone could bring a rocket ship that lights up and makes noises, Alex would be most appreciative. He saw one last night at a fireworks show and really, really wants one now. I'll pay you back!
I have been ordered to sleep. So I am going to rest now. Thank you all for your prayers. Keep them coming!!
God bless!
G
Monday, July 2nd 12:22am
We just had to give Alex 8mg of steroids (the highest dose yet). His symptoms are not due to the ventricle swelling so a shunt will not help. They are due to the swelling of the tumors. We hope he will be able to rest tonight. We see Dr. Foreman at 10am.
Pray. Pray loud, pray long, pray often, pray hard, pray soft, just pray for Alex, my sweet, beautiful, wonderful, dear little boy and keeper of my heart.
This is too hard.
G
Pray. Pray loud, pray long, pray often, pray hard, pray soft, just pray for Alex, my sweet, beautiful, wonderful, dear little boy and keeper of my heart.
This is too hard.
G
Saturday, June 30, 2007
Saturday, June 30th; "Mom, when will I feel better?"
Okay, just so you know this is not going to be fun. After a very long day Thursday, we decided to take a family walk w/ the double stroller. Alex really, really did not want to go but by the time we made it to the lake he was saying, "this was such a great idea, I'm glad we are outside!" So life was good. Then about half way around the lake as Zoe and Dad are playing with Roxie in the grass and Alex and I are tagging behind, Alex asks, "Mom, when will I feel better?" OHHHH, the stabbing pain. Nooooo, please don't ask me that! Please, oh please! I'll buy you anything, but just don't ask me that!!!!
I stumbled all over my answer, batted it over to dad who looked like a deer in a semi's headlights. And was completely, unable to comfort Alex or ease his mind. It had to be one of the worst feelings, I have ever experienced. But, we went on, and as kids always do, were brought back to the moment and had a very enjoyable time. I must say the pain is still there, and even more so when you hear what happened yesterday (the following day).
So late Thursday night, I realized that Alex had not been to the restroom all day. Then I did a mental count of how much he had consumed in the week; and it did not add up to much. Since Monday, Alex has had a very tough week. Loss of appetite, symptoms reappearing, sleepiness, and horrible headaches. We contributed all of this to the lack of steroids, since Monday was his first day without them. Well, when we called the docs early Friday morn, they of course, wanted to see Alex.
Well, after spending a full day at the hospital, we learned that Alex's brain ventricles have filled with fluid due to swelling around the tumors. This swelling could be due to necrosis, growth, radiation. No one knows. But his csf (cerebral spinal fluid) is not being allowed to flow freely out of his head. They gave him high dose of steroids via IV. Fluids via IV. And sent us home with more steroids for the next few days. They said if Alex has any problems breathing, is sleepy and/or has worsening headaches to call and bring him back to the hospital. Well, I hate to say but he had a horrible night and breathing seemed very labored. So back we go.
As you may guess, I am exhausted. The kids had a play date scheduled and Alex really wanted to get out of the hospital and go, so STeve and I went to a local bar/restaurant and proceeded to drown our sorrows. We chose beer, chicken wings and black and bleu burgers with fries. The owner even bought us a round of shots! Oh Lord, please help me. After losing 15 pounds eating all the right stuff and no liquor, my body rebelled against me!!! And just to add to the pain, my labwork showed that I have low progesterone. Which explains why my "Aunt Flo" keeps showing up every three days!!! So exhaustion is not a big enough word for how I feel. I have no clue how to get through this day! But I will.
I have to run, Alex's teacher is coming for a visit. Have a wonderul holiday and God bless.
G
I stumbled all over my answer, batted it over to dad who looked like a deer in a semi's headlights. And was completely, unable to comfort Alex or ease his mind. It had to be one of the worst feelings, I have ever experienced. But, we went on, and as kids always do, were brought back to the moment and had a very enjoyable time. I must say the pain is still there, and even more so when you hear what happened yesterday (the following day).
So late Thursday night, I realized that Alex had not been to the restroom all day. Then I did a mental count of how much he had consumed in the week; and it did not add up to much. Since Monday, Alex has had a very tough week. Loss of appetite, symptoms reappearing, sleepiness, and horrible headaches. We contributed all of this to the lack of steroids, since Monday was his first day without them. Well, when we called the docs early Friday morn, they of course, wanted to see Alex.
Well, after spending a full day at the hospital, we learned that Alex's brain ventricles have filled with fluid due to swelling around the tumors. This swelling could be due to necrosis, growth, radiation. No one knows. But his csf (cerebral spinal fluid) is not being allowed to flow freely out of his head. They gave him high dose of steroids via IV. Fluids via IV. And sent us home with more steroids for the next few days. They said if Alex has any problems breathing, is sleepy and/or has worsening headaches to call and bring him back to the hospital. Well, I hate to say but he had a horrible night and breathing seemed very labored. So back we go.
As you may guess, I am exhausted. The kids had a play date scheduled and Alex really wanted to get out of the hospital and go, so STeve and I went to a local bar/restaurant and proceeded to drown our sorrows. We chose beer, chicken wings and black and bleu burgers with fries. The owner even bought us a round of shots! Oh Lord, please help me. After losing 15 pounds eating all the right stuff and no liquor, my body rebelled against me!!! And just to add to the pain, my labwork showed that I have low progesterone. Which explains why my "Aunt Flo" keeps showing up every three days!!! So exhaustion is not a big enough word for how I feel. I have no clue how to get through this day! But I will.
I have to run, Alex's teacher is coming for a visit. Have a wonderul holiday and God bless.
G
Tuesday, June 26, 2007
Necessary Ugly, June 26th
Necessary Ugly
She was with her teens,
one boy, one girl
the american dream!
Her venom was viscious,
It filled the air.
She could have killed,
had we not been there.
She never noticed,
she never saw,
my radiation swollen young boy,
nor my awe.
I thought how wonderful,
it would/should be
to be mad about clothes
and not mad about "C".
How lucky she was;
how carefree she could be
but at this time
It was necessary to be ugly
and to just not see.
by: Me
She was with her teens,
one boy, one girl
the american dream!
Her venom was viscious,
It filled the air.
She could have killed,
had we not been there.
She never noticed,
she never saw,
my radiation swollen young boy,
nor my awe.
I thought how wonderful,
it would/should be
to be mad about clothes
and not mad about "C".
How lucky she was;
how carefree she could be
but at this time
It was necessary to be ugly
and to just not see.
by: Me
Friday, June 22, 2007
Friday, June 22nd
Hi all,
Well so far so good, as Alex comes off the steroids. If all goes well this weekend, he'll be taken off completely on Monday. He has been spending his days running errands with me or working puzzles. He has even attempted a 500 piece puzzle, but sister (now renamed: Two) keeps pulling all puzzle pieces off the table and onto the floor. So Alex is a bit frustrated. Zoe (I mean Two) has really been doing a wonderful job of testing those limits. Her teacher and I agreed this morning that she is destined for greatness. Not only because she has that aura about her but that she absolutely, positively, won't settle for anything less than what she wants!! And she wants alot!! Whew, I'm tired just typing about it.
Nonetheless, she's a keeper and we love her so. Tomorrow she should have a wonderful day at a local charity's annual picnic. There will be animals and carnival like rides, etc. It should be a real treat. Steve and I have been invited to a play (our neighbor is in it) so we have a babysitter coming over and we plan on having a date night!! There may even be a drink or two involved. Whoo Hoo living the big life now!!
On the subject of BIG, so far Steve has lost over 19 pounds and I have lost over 11. That's 30 pounds GONE since we started this program!! It is still very hard to manage the food restrictions, but we are getting the hang of it. Wish us well.
Okay, well things are moving forward with the fund raisers! I hope you all plan on coming! We would love to have you!
Have a wonderful day and God bless!
G
Well so far so good, as Alex comes off the steroids. If all goes well this weekend, he'll be taken off completely on Monday. He has been spending his days running errands with me or working puzzles. He has even attempted a 500 piece puzzle, but sister (now renamed: Two) keeps pulling all puzzle pieces off the table and onto the floor. So Alex is a bit frustrated. Zoe (I mean Two) has really been doing a wonderful job of testing those limits. Her teacher and I agreed this morning that she is destined for greatness. Not only because she has that aura about her but that she absolutely, positively, won't settle for anything less than what she wants!! And she wants alot!! Whew, I'm tired just typing about it.
Nonetheless, she's a keeper and we love her so. Tomorrow she should have a wonderful day at a local charity's annual picnic. There will be animals and carnival like rides, etc. It should be a real treat. Steve and I have been invited to a play (our neighbor is in it) so we have a babysitter coming over and we plan on having a date night!! There may even be a drink or two involved. Whoo Hoo living the big life now!!
On the subject of BIG, so far Steve has lost over 19 pounds and I have lost over 11. That's 30 pounds GONE since we started this program!! It is still very hard to manage the food restrictions, but we are getting the hang of it. Wish us well.
Okay, well things are moving forward with the fund raisers! I hope you all plan on coming! We would love to have you!
Have a wonderful day and God bless!
G
Tuesday, June 19, 2007
"Who is in the stroller?"; Tuesday, January 19th pt. 2
So Alex is doing pretty well coming off the steroids. He has had a few (2-3) chokes while drinking, but nothing too traumatic for him. He does not want to use his "transformer". I am not sure if it is just too hard still or the unease he feels with it; buut he would rather walk without it at times. The staff at the clinic said "to not force it"; that he would walk again in due time. So I think I will lay off for a while. Yesterday was four weeks post radiation, and so far no sign of the radiation solemness. Alex loves doing his puzzles; and as soon as we can find it, will be building all sorts of things with his new "Lego game". This is a game that he has played at OT and really enjoys. I hope to go by the toy store after my dental cleaning today to pick one up. Super T did not have one. Besides that, Alex is still decreasing his meds and if all goes well (fingers crossed!!!) will be taken off all steroids next Monday. I am tentatively optimistic at this time. It is so scary to get your hopes up.
Zoe is loving school. Steve usually drops her off in the morning and she is so happy when I pick her up. Her vocabulary is growing each week; but she has learned to pinch AND she tried biting today. She loves dismantling her brother's puzzles and listening to him wail at her when she does. I have tried to explain to him that he is making it fun for her to torment him by giving such dramatic responses, but that does not help him much. She is a very typical two year old. She has to test boundaries and figure out how this world works and what she can get away with in it.
We set up an inflatable pool for her this weekend and she loves to go in and out of it, pour the water, take the toys in and out. I have become a nervous wreck because I can't see her if I am inside. I have stopped letting her even go out back unless someone can watch her. I may just have to take the pool down to save my sanity!!! Steve thinks I am crazy but I know kids drown in kiddee pools and can't tolerate the idea of that happening.
So Steve and I have decided that this is hard. Every little second is hard. I can't imagine how a four year old deals with this stuff. I am having real problems and I supposedly have some coping skills (aka: meds!!!) Today, while picking up Zoe, we saw a former classmate of Alex's in the lobby. He asked me, "who is in the stroller? I told him, "Alex". His face said it all. I said, "he looks different huh?" and he replied, "why?" to which I said "his medicines".
I showed Alex's pic to a friend the other day. Her eyes started welling up with tears. She admitted that she had not come around because she was "scared to see him (scared of her reaction)." I so understand this, but explained to her that "this is the easy part." That I will take Alex any way I can get him and as long as he is improving and smiling, life is good! I think about our friends that lost their boy to brain cancer and my mind reels at how incomprehensible that pain must be. I can't (and won't) imagine living without Alex in my life. I don't know how. He keeps me going everyday.
I wondered aloud to Steve tonight that I may be shutting down emotionally. That it is just too hard to really "feel" this. I asked him if our kids were suffering and not feeling loved because of this shutdown. He said that the kids definitely feel loved. So I then proposed the question, "do you think they miss my affection?" To which Steve just nodded and frowned. We then shared a long, knowing stare into each other's eyes.
I hope to work on this in the next few days. To really stop (days are flying by) and share an embrace with the kids. Again, I am scared to break down in front of them, but I'm starting to think more damage may be done by "just going through the motions".
Okay, so Saturday was the one year anniversary of Alex's diagnosis. Can you believe it has been a year? It feels like five to me! We went to see "Ratatouille", Saturday night and loved it. I can't remember the last time I heard applause at the end of a movie, but it is a good story and directed Brad Bird, who also directed "The Incredibles". I highly recommend it, just be aware that it is two hours long (long for a kids' flick).
Sunday, was Father's day and Zoe gave Steve a hand painted frame with her picture inside. Alex got his dad a set of David McCullough books and I got him concert tickets to two of our favorite artists that are coming to town together! Can't wait! We then headed out for the ball game. Alex had been talking about this game all week, and after only ten minutes in our seats, he was ready to go. The noise was just too much for him. Steve and I took a day off from our new "lifestyle" and enjoyed some beers and brat. We told Alex that we would leave after the fifth inning and so we did. It was fun but since Alex did not have a good time, we probably won't be going back with the kids for a while. Good thing anyway, since I put on a pound after the indulgence. Get this! Steve lost weight and absolutely ate more than I did by far!!! It is just not FAIR!!!
Okay, well I hope I can sleep now since these posts are done. I know every one's summer is moving right along. Send a comment when you can. We feel your presence and well wishes everyday, in every precious smile.
God bless!
G
Zoe is loving school. Steve usually drops her off in the morning and she is so happy when I pick her up. Her vocabulary is growing each week; but she has learned to pinch AND she tried biting today. She loves dismantling her brother's puzzles and listening to him wail at her when she does. I have tried to explain to him that he is making it fun for her to torment him by giving such dramatic responses, but that does not help him much. She is a very typical two year old. She has to test boundaries and figure out how this world works and what she can get away with in it.
We set up an inflatable pool for her this weekend and she loves to go in and out of it, pour the water, take the toys in and out. I have become a nervous wreck because I can't see her if I am inside. I have stopped letting her even go out back unless someone can watch her. I may just have to take the pool down to save my sanity!!! Steve thinks I am crazy but I know kids drown in kiddee pools and can't tolerate the idea of that happening.
So Steve and I have decided that this is hard. Every little second is hard. I can't imagine how a four year old deals with this stuff. I am having real problems and I supposedly have some coping skills (aka: meds!!!) Today, while picking up Zoe, we saw a former classmate of Alex's in the lobby. He asked me, "who is in the stroller? I told him, "Alex". His face said it all. I said, "he looks different huh?" and he replied, "why?" to which I said "his medicines".
I showed Alex's pic to a friend the other day. Her eyes started welling up with tears. She admitted that she had not come around because she was "scared to see him (scared of her reaction)." I so understand this, but explained to her that "this is the easy part." That I will take Alex any way I can get him and as long as he is improving and smiling, life is good! I think about our friends that lost their boy to brain cancer and my mind reels at how incomprehensible that pain must be. I can't (and won't) imagine living without Alex in my life. I don't know how. He keeps me going everyday.
I wondered aloud to Steve tonight that I may be shutting down emotionally. That it is just too hard to really "feel" this. I asked him if our kids were suffering and not feeling loved because of this shutdown. He said that the kids definitely feel loved. So I then proposed the question, "do you think they miss my affection?" To which Steve just nodded and frowned. We then shared a long, knowing stare into each other's eyes.
I hope to work on this in the next few days. To really stop (days are flying by) and share an embrace with the kids. Again, I am scared to break down in front of them, but I'm starting to think more damage may be done by "just going through the motions".
Okay, so Saturday was the one year anniversary of Alex's diagnosis. Can you believe it has been a year? It feels like five to me! We went to see "Ratatouille", Saturday night and loved it. I can't remember the last time I heard applause at the end of a movie, but it is a good story and directed Brad Bird, who also directed "The Incredibles". I highly recommend it, just be aware that it is two hours long (long for a kids' flick).
Sunday, was Father's day and Zoe gave Steve a hand painted frame with her picture inside. Alex got his dad a set of David McCullough books and I got him concert tickets to two of our favorite artists that are coming to town together! Can't wait! We then headed out for the ball game. Alex had been talking about this game all week, and after only ten minutes in our seats, he was ready to go. The noise was just too much for him. Steve and I took a day off from our new "lifestyle" and enjoyed some beers and brat. We told Alex that we would leave after the fifth inning and so we did. It was fun but since Alex did not have a good time, we probably won't be going back with the kids for a while. Good thing anyway, since I put on a pound after the indulgence. Get this! Steve lost weight and absolutely ate more than I did by far!!! It is just not FAIR!!!
Okay, well I hope I can sleep now since these posts are done. I know every one's summer is moving right along. Send a comment when you can. We feel your presence and well wishes everyday, in every precious smile.
God bless!
G
"What is dead?"; Tuesday, June 19th
Hi all. So it is 2:40am and once again I cannot sleep. I do not know if it is life, stress or all of the "metabollic boosters" this new "lifestyle" has us on but I don't do well without my rest! Anyway, I have had a few posts in my head for a while now so I thought I would just go ahead and get them done.
So here is a conversation that occurred last Tuesday or so. I had asked Alex to help me spot a mailbox on the way to pick up Zoe at school. He wanted to know why. I told him that I had a Father's Day card for granddad. Alex paused and said "but Grandpa is dead." My mind wondered whether he meant my dad or Steve's (who just passed in January). Then I realized that Alex no longer has a biological granddad anymore and that it did not matter which one he was speaking of. I then told Alex that he was right, but the card was going to Randy, my step father and his granddad. Then I asked him, "do you know what dead means?" He stopped playing his handheld game and looked up and said "too old?"
Well, I thought about that, and had to agree. So I told him "yes, too old is exactly right." What else could it mean?
So here is a conversation that occurred last Tuesday or so. I had asked Alex to help me spot a mailbox on the way to pick up Zoe at school. He wanted to know why. I told him that I had a Father's Day card for granddad. Alex paused and said "but Grandpa is dead." My mind wondered whether he meant my dad or Steve's (who just passed in January). Then I realized that Alex no longer has a biological granddad anymore and that it did not matter which one he was speaking of. I then told Alex that he was right, but the card was going to Randy, my step father and his granddad. Then I asked him, "do you know what dead means?" He stopped playing his handheld game and looked up and said "too old?"
Well, I thought about that, and had to agree. So I told him "yes, too old is exactly right." What else could it mean?
Monday, June 11, 2007
Monday, June 11th
Well, the weekend started off with several spa treatments for me. I went to the Coldwater Creek Spa and cashed in my Mother's Day gift of reflexology, facial, massage and pedicure!!! It was awesome, except by the third treatment (facial) I was ancy. My body is not used to sitting still for that long! I really had to force myself to just relax and enjoy it! I highly recommend this spa! It was excellent! A real treat! Try to get there asap!!
Alex and Zoe had a pretty good weekend too. Alex and Steve went to see Spiderman 3 on Sunday, while Zoe and I ran errands. Alex had a choking spell Sunday night that really freaked him out. He has not choked in so long and avoided food and drink until late this morning. We did our best to reassure him that it was just a one time deal but he was so scared. It was heartbreaking. Fortunately, he seems to be doing better. This evening, at dinner, he stated "I think I am doing better. I'm not choking anymore!" We agreed and told him that he most definitely is doing better!! The only bad news is that his drool is back. He brought it up this afternoon; so I know it really is back. =0( My prayer is that it goes away soon and that as he decreases his steroids even more this week that no other symptoms return. Oh PLEASE DEAR LORD, let Alex have a good week, month, summer, YEAR, LIFE!!!
Zoe Grace is just loving school. She came home today and went to the bookshelf and sat down and started "reading" the book. Her teacher said that she sang a verse all by herself today during "circle" time!! She EVEN wanted to wear her big girl underpants!!!! YEAH!!
So Alex has discovered puzzles!! He loves them and is very good at getting them together. I can't tell you how many puzzles we have done and redone over the past week. Right now, he is doing 100 piece puzzles for 5 year olds! He is very proud and it is fun to do with him!
Steve and I were able to go out to a movie on Friday night. We saw "Paris, jetaime" (I think I spelled that right.) Anyway, I can highly recommend this movie. It is a "compilation" film consisting of 15 vignettes (mini-movies) by different directors all set in Paris. It is a real ride! One vignette, is about a mother coping with her young son's death. OMG, I nearly lost it in the theater!! I cried, ALOT, but was able to pull it together. It was so intense! Anyway, not all the vignettes are sad and I think this was a very enjoyable way to spend an evening.
So Steve and I have completed one week on the Slim 4 Life plan. We have lost a combined 19.25 pounds!!! Can you believe it? THis is a serious lifestyle change!! No alcohol, no sugar, low (I mean low) fat and carbs and lots of supplements!! One of the supplements is an intense "energy booster" and the reason I am doing this blog at 10:47p and not sleeping right now. You can just feel yourself zing!! Anyway, I lost 7.25 lbs and Steve 12; so we are stoked. It's weird, I don't miss all of the things that we can't have. Maybe for a second or two but then that goes away and there is something else to do. The food consists of lots of fish, veggies and fruits. The fruits are sooo yummy too!! You eat all during the day so you never really are hungry. But miss a meal and you suffer!!! STeve and I have experienced some low blood sugar moments because we did not eat when we should have. That was not pretty. We'll get better and hopefully smaller!!! Wish us well!
Well, that is it. I had better get to bed. I hope you all are enjoying your summer. Drop me a line! I miss you all!
God bless!
G
Alex and Zoe had a pretty good weekend too. Alex and Steve went to see Spiderman 3 on Sunday, while Zoe and I ran errands. Alex had a choking spell Sunday night that really freaked him out. He has not choked in so long and avoided food and drink until late this morning. We did our best to reassure him that it was just a one time deal but he was so scared. It was heartbreaking. Fortunately, he seems to be doing better. This evening, at dinner, he stated "I think I am doing better. I'm not choking anymore!" We agreed and told him that he most definitely is doing better!! The only bad news is that his drool is back. He brought it up this afternoon; so I know it really is back. =0( My prayer is that it goes away soon and that as he decreases his steroids even more this week that no other symptoms return. Oh PLEASE DEAR LORD, let Alex have a good week, month, summer, YEAR, LIFE!!!
Zoe Grace is just loving school. She came home today and went to the bookshelf and sat down and started "reading" the book. Her teacher said that she sang a verse all by herself today during "circle" time!! She EVEN wanted to wear her big girl underpants!!!! YEAH!!
So Alex has discovered puzzles!! He loves them and is very good at getting them together. I can't tell you how many puzzles we have done and redone over the past week. Right now, he is doing 100 piece puzzles for 5 year olds! He is very proud and it is fun to do with him!
Steve and I were able to go out to a movie on Friday night. We saw "Paris, jetaime" (I think I spelled that right.) Anyway, I can highly recommend this movie. It is a "compilation" film consisting of 15 vignettes (mini-movies) by different directors all set in Paris. It is a real ride! One vignette, is about a mother coping with her young son's death. OMG, I nearly lost it in the theater!! I cried, ALOT, but was able to pull it together. It was so intense! Anyway, not all the vignettes are sad and I think this was a very enjoyable way to spend an evening.
So Steve and I have completed one week on the Slim 4 Life plan. We have lost a combined 19.25 pounds!!! Can you believe it? THis is a serious lifestyle change!! No alcohol, no sugar, low (I mean low) fat and carbs and lots of supplements!! One of the supplements is an intense "energy booster" and the reason I am doing this blog at 10:47p and not sleeping right now. You can just feel yourself zing!! Anyway, I lost 7.25 lbs and Steve 12; so we are stoked. It's weird, I don't miss all of the things that we can't have. Maybe for a second or two but then that goes away and there is something else to do. The food consists of lots of fish, veggies and fruits. The fruits are sooo yummy too!! You eat all during the day so you never really are hungry. But miss a meal and you suffer!!! STeve and I have experienced some low blood sugar moments because we did not eat when we should have. That was not pretty. We'll get better and hopefully smaller!!! Wish us well!
Well, that is it. I had better get to bed. I hope you all are enjoying your summer. Drop me a line! I miss you all!
God bless!
G
Tuesday, June 05, 2007
Tuesday to Wednesday June 5 & 6 (Email for Evite)
Well, we are all still here. The world has not stopped spinning and everyone's life just keeps right on going (if you are lucky!). Friday evening, while relaxing outside, Alex decided it was a good time to shave his head (I asked first, of course.) He did very well, we were all very casual about the whole thing and he looks much better now. It was weird not recognizing him in the middle of the night, but that did not last long. This pic is Alex with another "cool dude" we know!! Aren't they too cute? Alex is not as small as he looks in this pic, the guy is just really, really tall. Not to mention a great person and a good friend to all of us.
Steve was ill over the weekend and we were not able to use the baseball tickets Make-A-Wish provided to us. I was really looking forward to the game but there will be others. Hopefully we can use the tickets we have for Father's Day!
Alex's doctor said he looked great and was showing improvement. So much so that , he does not have to return to the clinic next week if all goes well this week. His meds have been reduced even further and so far so good! (knock on wood, fingers crossed!!) He has lost some muscle tone in his right leg and is hyper-extending his knee every time he steps. Looks very painful and he may be fitted for a new brace soon. A walker (transformer, as we call it!) has been ordered to help him with his stability, mobility and independence for the time being until he regains his leg strength. Hopefully that will be soon.
So Zoe started back at school Monday. She does not enjoy drop off but seems to do just fine afterwards. Alex and I drove by on her first day, after leaving the hospital, and watched her on the playground. She seemed to be okay. She was sitting on a bench taking off her shoes. Zoe has a love/hate thing going with her shoes. (I blame Nadine for the whole thing! Whenever she would visit, she would immediately remove Zoe's shoes and start playing with her "piggies".) Tuesday morning when we arrived at the school, Zoe instantly wrapped her body around my leg and demanded to be carried. She really did not want to be dropped off, but the teachers say she had a good day. I can tell already that this experience will be good for everyone. So far she has fallen asleep in the car before we are two blocks from the school.
So my dizziness has not been as prevalent in the last few days. I wish I could say it is gone completely, but it is still there. I called for my lab work and they said it could be another week or so. My hormones are in California right now! I want to be in California!!! A change of scenery would be great!! We have talked about a family vacation this summer. Somewhere just the four of us can go and relax and really just have some down time from appointments, scans, meds, stress!! Doesn't that sound great! Let's all go on vacation!! (Just not together!)
Alex's weight is up to 48 big ones!! He is now 41 inches tall (that is one inch of growth in the last year.) His starting weight was 40 pounds and his lowest was 32. He is getting very hard to carry around and I am looking forward to him gaining some strength and independence with his mobility.
So, speaking of weight, Steve and I are in day two or our three day "cleansing phase" of the Slim 4 Life weight loss plan. Steve has been asking me if I wanted to do Weight Watchers again, and I have adamantly stated "NO!" I lost one hundred pounds with WW over a decade ago. Unfortunately, I did not NEED to lose 100 pounds. The first 50 came off the "right" way and the last 50 I just starved off. So I say that I lost 100 pounds for about an hour and then the weight started coming right back on! After my last WW experience, and several weeks of off and on plan; I realized that I had gained and lost over 20 lbs! (Key word there is gained!) So I quit. I decided it was better just to be fat then to have my weight go up and down and down and up and up.
So I found this plan and went for a consult. I have no idea if it will work or if I will work it, but it is worth a try. I know taking on weight loss at a time like this probably does not make sense to you; but the stress of getting heavier is much greater than attempting to get control over our lives and eating (believe me on this one!!) So wish us luck. We have another day of detox, an education seminar tomorrow night and then (if there promises are correct) Steve will be done with the "weight loss" portion of the program in 26 weeks and I will complete it in 36 weeks!!! Sounds too good to be true, but maybe, just maybe, we can put this together and get this monkey off our/my back(s)!! I'm so sick of hating myself and my body. A diet can't be worse than that, can it?
Okay, let's end this on a positive note. The upcoming fundraisers are going to be fantastic!! There are some incredible women working very, very hard to put these events together and I am absolutely overwhelmed with their efforts. If you did not read the "Save the Date" blog, here are the dates and information again.
Friday, July 27th 6p - local country club
Dinner, Dancing, Live and Silent Auction
(on-line bidding will be available)
Saturday, August 4th-9a to Noon - local park
Family fun pancake breakfast with a Silent Auction as well!
If you want an evite please write to fightthebump@comcast.net and I will make sure you get one. Or if you want to donate a product or service, we can use those too! I am currently creating a myspace page for all of this info so you don't have to keep reading these horribly long blogs!!
Okay, digest all that, and get back to me!! =0)
Have a wonderful day!
God bless!
G
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