Are you ready for some GREAT news? Alex is at school this morning!!!!! He is back at his old Montessori school just on Tuesdays and Thursdays and just in the AM. I had been talking to the director about figuring something out for Alex, but this was all his (and Grace's) idea! After picking up ZG yesterday, he asked me "Mom, can I go to school tomorrow?" This was after spending 20 minutes or so with Ms. Grace in the car while I went in the school to get Zoe. Grace fessed up this morning that she may have planted the idea in his head by telling him how excited she was to have him back at the school. Anyway, a few phone calls later and it was a done deal! I feel like I did on that very first day of school, when Alex was only four months old. I am so happy for him. I will be going back to do "circle time" with Alex and his old classmates in a few minutes. I am sure some of the children will have some great questions to ask!
So we had a great weekend too. Friday night was spent with lots of the neighbors, laughing, drinking wine and eating pizza! I did something I have never done before! I fell asleep putting the kids to bed at 8pm. Turned out to be a good thing since Alex was up at 5am and Steven had taken a Tylenol PM at bedtime. Saturday started off with an unexpected visit from my boss and his lovely wife. That was a great surprise! Steve and Alex made a trip to the hardware store, where they went "fast" in the flat cart! Then Alex's friend, Lucas came over for a surprise visit in the evening. Sunday we had brunch with some good friends with kids the same age as A and Z; then did a spontaneous drive to the mountains. We ended up on the "highest road in America" which Alex loved and has asked to do again this coming weekend.
Most importantly, Alex has been able to pee every day since leaving the hospital and his doc said he looks great! So one may ask how we are doing with all of this. I am not ready to accept anything at this time. I am in full AVOIDANCE mode, so please don't force a conversation about prognosis on me! I won't do it! I can't even talk to my family yet. Steve had a huge Freudian slip on our drive. We were discussing the play area and decided to go ahead with our plans. I want to have everyone over to make individual, custom stepping stones for the play area. Steve was saying something about that area and out came "like a memorial". He immediately apologized, we laughed then cried then composed ourselves and enjoyed the view. That was so painful it hurt physically.
Okay, well let's go back to the best news to date; Alex is in school!!! Hooray! I want to thank Lisa, Grace and Ms. Alicia for making this happen. It is so huge!!
God bless,
G
Tuesday, August 28, 2007
Friday, August 24, 2007
Friday, August 24th
Alex is home without a catheter!!!!! I don't know how you did it but you did it! God Bless you! Much Love, going to really enjoy today, G!
Thursday, August 23, 2007
Thursday, August 23rd-Talk w/ Foreman
So Alex finally was able to pee about 3p today. It was after 3 attempts and a failed catheterising. There seems to be a problem with his foreskin which gave us hope for a little bit but that was soon smashed and broken into many pieces. Steve and I decided yesterday that we wanted to talk to Dr. Foreman about his policy of providing information on an as needed basis. We expressed our irksomeness at Alex's lack of progress and this latest "surprising" development that the staff says they have known about for a while. Well, then why weren't we told about this bladder issue earlier?
His response to our concerns was that he would have to give us a list of possibilities that are most likely not to occur and in his experience it is better to do things this way because usually bladders heal themselves after radiation, etc.
So here is the spiel that really sets the stage for the future. Dr. Foreman says that 70% of post radiation, brainstem tumor children show improved quality of life at this point. That means 30% don't. Alex is definitely in that 30%. Regardless of the quality of life issue, 80% of patients with this type of tumor (remember, Alex's is not typical) will regress between 9 and 11 months post radiation (that's early spring 2008 for Alex). Once symptoms return they return with a vengenance and usually within six weeks the child is deceased. So the remaining 20%, (we did not go further than this point) I assume get to that 2-3 year milestone and if they survive that then prognosis is good.
Since Alex's tumor is not typical and Dr. Foreman is not God, no one knows what will happen, but those are the stats. Dr. Foreman thinks Alex's quality of life is as good as it will ever get at this point (or very near to it). He talked to us about what would improve Alex's happiness at this point. We talked about things like an electric wheelchair and going to school as long as it is enjoyable for Alex.
I am still at the hospital. I went home earlier to shower and returned for our meeting. Steve has taken a dinner break with a friend and will return shortly with Mac Grill for Alexander. At that time, ZG and I will head home and start our evening routine. Hopefully some girlfriends are expected to meet me at the house. I plan on drinking some wine and hopefully (or not) feeling this. I am in shock I think. I just want this to stop and to hear some good news.
This is so bad. How do you stay positive at this point? How do you prepare? What do you prepare for? AUGHHHH!! MAKE IT STOP, PLEASE! THIS IS NOT FAIR, DAMN IT!!!!!!!
GB, G.
His response to our concerns was that he would have to give us a list of possibilities that are most likely not to occur and in his experience it is better to do things this way because usually bladders heal themselves after radiation, etc.
So here is the spiel that really sets the stage for the future. Dr. Foreman says that 70% of post radiation, brainstem tumor children show improved quality of life at this point. That means 30% don't. Alex is definitely in that 30%. Regardless of the quality of life issue, 80% of patients with this type of tumor (remember, Alex's is not typical) will regress between 9 and 11 months post radiation (that's early spring 2008 for Alex). Once symptoms return they return with a vengenance and usually within six weeks the child is deceased. So the remaining 20%, (we did not go further than this point) I assume get to that 2-3 year milestone and if they survive that then prognosis is good.
Since Alex's tumor is not typical and Dr. Foreman is not God, no one knows what will happen, but those are the stats. Dr. Foreman thinks Alex's quality of life is as good as it will ever get at this point (or very near to it). He talked to us about what would improve Alex's happiness at this point. We talked about things like an electric wheelchair and going to school as long as it is enjoyable for Alex.
I am still at the hospital. I went home earlier to shower and returned for our meeting. Steve has taken a dinner break with a friend and will return shortly with Mac Grill for Alexander. At that time, ZG and I will head home and start our evening routine. Hopefully some girlfriends are expected to meet me at the house. I plan on drinking some wine and hopefully (or not) feeling this. I am in shock I think. I just want this to stop and to hear some good news.
This is so bad. How do you stay positive at this point? How do you prepare? What do you prepare for? AUGHHHH!! MAKE IT STOP, PLEASE! THIS IS NOT FAIR, DAMN IT!!!!!!!
GB, G.
Wednesday, August 22, 2007
Wednesday, August 22nd- Worried Oncologist
Hi all, good news first. Steve is home!!!! YEAH!! More good news, it does not seem that Alex has a kidney infection, but we won't know for sure until tomorrow. Bad news, since Alex is not improving "neurologically" his oncologist, Dr. Foreman stated today that "I am worried, not in despair, but definitely worried." Not words you really want to hear as a parent, friend, loved one of such a beautiful wonderful precious boy. Steve took the news hard but I am keeping it at bay and not really feeling it just yet.
If Alex is not able to void his bladder completely by himself tonight then tomorrow I will be taught how to catheterize him and most likely we'll start that every four hours. This is just soooo wrong. I'll do it because it keeps Alex healthy, but just for the record-this sucks!!
Okay, Tina, I called your phone and a guy answered that had found it and said he would leave it for you at the jewelry counter at Macy's. Call me when you can, Alex wants to see the kids! Alex really wants visitors so please feel free to call/come by. We are in room 540, still downtown.
Okay, gotta go. Pray for pee!
God bless!
G
If Alex is not able to void his bladder completely by himself tonight then tomorrow I will be taught how to catheterize him and most likely we'll start that every four hours. This is just soooo wrong. I'll do it because it keeps Alex healthy, but just for the record-this sucks!!
Okay, Tina, I called your phone and a guy answered that had found it and said he would leave it for you at the jewelry counter at Macy's. Call me when you can, Alex wants to see the kids! Alex really wants visitors so please feel free to call/come by. We are in room 540, still downtown.
Okay, gotta go. Pray for pee!
God bless!
G
Tuesday, August 21, 2007
Tuesday, August 21st
After a sleepless night, Alex is being admitted to the hospital. I have been concerned about dehydration for several days now, but since he peed yesterday I figured all was okay. But this am he said his side hurt and he could not pee. So after being catheterized to relieve his bladder and getting 240 cc of concentrated urine, the docs are afraid Alex may have some nerve damage that keeps him from peeing by himself. We also fear a kidney infection.
I have been told that he will be in the hospital for at least two nights. He has to have a urology consult, a rehab consult and kidney imaging and some other stuff that I have forgotten now. But none of it sounds fun. They said Alex may never be able to relieve himself and that I may have to learn to catheterize him myself. That is just not right! When will the friggin' good news start! When will this turn around! I want Alex BETTER!!!! not worse!
ARGHHHHH! This is definitely not going to help my cortisone and insulin levels!!!
Wish us luck! God bless!
G
I have been told that he will be in the hospital for at least two nights. He has to have a urology consult, a rehab consult and kidney imaging and some other stuff that I have forgotten now. But none of it sounds fun. They said Alex may never be able to relieve himself and that I may have to learn to catheterize him myself. That is just not right! When will the friggin' good news start! When will this turn around! I want Alex BETTER!!!! not worse!
ARGHHHHH! This is definitely not going to help my cortisone and insulin levels!!!
Wish us luck! God bless!
G
Monday, August 20, 2007
Monday, August 20th- G's Diagnosis
Well after three missed appointments, I finally made it to see the compounding pharmacist my doctor recommended I visit after my blood work results came back. After some review, she said that my blood work is that of an exhausted person. Normal cortisone levels should be about 22 in the morning and drop to 4 at bedtime. My mid-morning level was 5. So they call that adrenal fatigue.
She also found that I have high insulin levels so last week when I did not feel like eating right and ate more carbs than usual, I suffered some serious consequences like feeling dizzy, achy and short of breath.
So she wants me to stop my bc pills which cause low progesterone and estrogen levels, depression and shortness of breath. She also said I need to rest, lots of rest, and then more rest. She recommended gentle exercise and some weight lifting. She gave me a book to read so that I can ask some informed questions at our next visit.
Overall, she summed me and my symptoms all up. I am to continue the Slim 4 Life program just without the metabolizers. She said the low carb diet is my ONLY option at this time and losing weight is essential to my long term success.
I am happy to have a diagnosis and a plan. Now to get educated on all of this and implement some changes. Wish me luck!
God bless.
G
She also found that I have high insulin levels so last week when I did not feel like eating right and ate more carbs than usual, I suffered some serious consequences like feeling dizzy, achy and short of breath.
So she wants me to stop my bc pills which cause low progesterone and estrogen levels, depression and shortness of breath. She also said I need to rest, lots of rest, and then more rest. She recommended gentle exercise and some weight lifting. She gave me a book to read so that I can ask some informed questions at our next visit.
Overall, she summed me and my symptoms all up. I am to continue the Slim 4 Life program just without the metabolizers. She said the low carb diet is my ONLY option at this time and losing weight is essential to my long term success.
I am happy to have a diagnosis and a plan. Now to get educated on all of this and implement some changes. Wish me luck!
God bless.
G
Sunday, August 19, 2007
Sunday, August 19th-Mommie Dearest
Well, here comes another week! Last night Steve and I had a wonderful evening just enjoying each other's company and some great food and wine! It was soooo incredible! I almost feel like a new person!
Steve got on a plane this afternoon and we are all missing him horribly. When we pulled into the garage without Steve, Zoe became very upset and started crying "No daddy! Go back! Go back!" Alex has expressed how much he misses his dad as well.
At bedtime, I read the same bedtime story we have read every night since Alex's birth (and even a few nights before that!) and then Alex asked that I lie down with them for a little bit. I started holding Alex's hand because he was picking his nose. Alex's nose looks bloody but it is really just the remnants of a wound that just won't heal due to the radiation and steroids. Anyway, I had put a band aid on his "picking" finger just to give his nose some time to heal. So as I am holding Alex's hand, he says "Mommie, you know, when you hold my hand I can't pick my nose." "Yes, Alex." "Mommie, no matter what you do, I will always hold your hand."
Uhh, well that was about the best thing I have heard in a long time. I have been tormented about how horrible I have been with the kids recently. Everyone says I am too hard on myself and that I should just relax but I think all moms know that there is always "more" we could be doing. ALWAYS!! So when Alex said that, I realized that even though I have completely messed up at times, he still just wants to hold my hand "no matter what." Ahh, peace. Joy. Happiness. My heart is full!
Okay, I don't know how long this feeling will last, but I wanted to get it down before it fades into a distant memory.
God bless, take care, send energetic, soothing energy please! (Is that an oxymoron? Is there energy that is soothing and energetic?) Oh crap, here I go again!
=0)
Steve got on a plane this afternoon and we are all missing him horribly. When we pulled into the garage without Steve, Zoe became very upset and started crying "No daddy! Go back! Go back!" Alex has expressed how much he misses his dad as well.
At bedtime, I read the same bedtime story we have read every night since Alex's birth (and even a few nights before that!) and then Alex asked that I lie down with them for a little bit. I started holding Alex's hand because he was picking his nose. Alex's nose looks bloody but it is really just the remnants of a wound that just won't heal due to the radiation and steroids. Anyway, I had put a band aid on his "picking" finger just to give his nose some time to heal. So as I am holding Alex's hand, he says "Mommie, you know, when you hold my hand I can't pick my nose." "Yes, Alex." "Mommie, no matter what you do, I will always hold your hand."
Uhh, well that was about the best thing I have heard in a long time. I have been tormented about how horrible I have been with the kids recently. Everyone says I am too hard on myself and that I should just relax but I think all moms know that there is always "more" we could be doing. ALWAYS!! So when Alex said that, I realized that even though I have completely messed up at times, he still just wants to hold my hand "no matter what." Ahh, peace. Joy. Happiness. My heart is full!
Okay, I don't know how long this feeling will last, but I wanted to get it down before it fades into a distant memory.
God bless, take care, send energetic, soothing energy please! (Is that an oxymoron? Is there energy that is soothing and energetic?) Oh crap, here I go again!
=0)
Friday, August 17, 2007
Friday, August 17th
Well there was a visit to the ER yesterday but it was not for Alex. I had to go. I had been dizzy since the night prior, woke up with body aches all over, and by 10:30 was short of breath and scared to death of passing out. I called my neighbor who came over and we made arrangements to get me to the ER. There, they tested my heart, blood, urine, blood pressure, blah blah blah and by 5:15p I was sent home with the diagnosis that I am a stress case and need to have a stress test asap. I got a good night's rest but soaked my pillow with sweat. I really don't know what is going on; but I do know that in the last week to ten days, I have not been myself. I have been short with the kids, unable to sleep, unwilling to eat, and just plain weary. I have described it as "my inner strength has vanished". That well, that we all dip into has run dry! I really wanted the docs to focus on the low progesterone diagnosis of a few weeks back but they were more concerned with the recent chest pains. So we'll see. I'm looking into yoga and Steve and I will be having the "should we get rid of Roxie" talk very soon.
Tomorrow is our wedding anniversary. It has been 50 years! Oh, I mean six years that feel like 50! Our good friends are taking the kids for the night and Steve and I hope to have dinner, drink(s) and then sleep ALL NIGHT! "Sleep" is the sexiest word I know right now! I can't wait!
I really want to say "thank you" to all of the incredible people who dropped everything to take care of me and the kids. I can't think of words to express how very grateful I am to each of you for EVERYTHING you did yesterday. THANK YOU, THANK YOU, THANK YOU!
Well, "Daddy comes home today!!" and we are all ecstatic! We have plans to pick him up this afternoon, take a family nap, go out for dinner and then go to a local fireworks show (maybe).
Lastly, since this is titled "Alexander's Blog", I want everyone to know that he is doing pretty well. He has started walking,with his transformer, without any "back up" from me or Steve. Today, he even got up onto the couch all by himself. His favorite thing now is answering the phone, so give him a call! He loves to talk on the phone! He has had some weird "pains" throughout his digestive track, head, neck, and face but the docs say it is just the steroids or the bumps causing them. Alex also had his first speech therapy appointment yesterday and was most impressive with the therapist and the department director who came in to do the assessment. He really just loves meeting new people and doing new things!
Okay, that's about it. Steve travels again next week and I have no idea how to cope with that but have decided to take my own advice and just do it "one day at a time". Lord help me, give me strength!
God bless!
G
Tomorrow is our wedding anniversary. It has been 50 years! Oh, I mean six years that feel like 50! Our good friends are taking the kids for the night and Steve and I hope to have dinner, drink(s) and then sleep ALL NIGHT! "Sleep" is the sexiest word I know right now! I can't wait!
I really want to say "thank you" to all of the incredible people who dropped everything to take care of me and the kids. I can't think of words to express how very grateful I am to each of you for EVERYTHING you did yesterday. THANK YOU, THANK YOU, THANK YOU!
Well, "Daddy comes home today!!" and we are all ecstatic! We have plans to pick him up this afternoon, take a family nap, go out for dinner and then go to a local fireworks show (maybe).
Lastly, since this is titled "Alexander's Blog", I want everyone to know that he is doing pretty well. He has started walking,with his transformer, without any "back up" from me or Steve. Today, he even got up onto the couch all by himself. His favorite thing now is answering the phone, so give him a call! He loves to talk on the phone! He has had some weird "pains" throughout his digestive track, head, neck, and face but the docs say it is just the steroids or the bumps causing them. Alex also had his first speech therapy appointment yesterday and was most impressive with the therapist and the department director who came in to do the assessment. He really just loves meeting new people and doing new things!
Okay, that's about it. Steve travels again next week and I have no idea how to cope with that but have decided to take my own advice and just do it "one day at a time". Lord help me, give me strength!
God bless!
G
Monday, August 13, 2007
Monday August 13th - Hitting Home
Hi all. So where to begin. Last week was quite painful for Alex due to constipation and other ills. On Friday, I took him to the hospital for abdomen xrays. The docs think that perhaps a nerve issue is causing the problem. Fortunately, things started moving over the weekend. But the week took its toll on me. After the hospital, I sat in the car and screamed until bile made my throat hurt. Then Steve and I went out for beers (thanks to Kathy!!!) and were able to drown our sorrows and talk some frustrations out. That is until Sunday, when it was Steve's turn.
After a long night, Alex had his dad carry him to the couch. Then he asked Steve to cover his feet with the blanket that was on him. Then he asked Steve to hand him the remote which was on his legs. Steve immediately took me outside and expressed his frustration. He was able to identify the problem as this: when we were going through treatments there was a plan; a beginning and an end to look forward to. Now there is just waiting-INTERMINABLE waiting!!!! He said that the couch incident really brought it home and asked me if I felt the same way. To which I just laughed and reminded him that I am HOME and yes, I feel the same way. I also reminded Steve that Alex has been betrayed by his body and believes that he really can't do ANYTHING. As an example, last week after two days of trying to have a BM, Alex was on the toilet again and we asked him to really push. He cried out "I CAN'T, I CAN'T DO ANYTHING!!!!" OMG, what a glimpse into how he feels about his body huh? Anyway, my point to Steve was this-that since he has been betrayed by his body; he has forgotten what he can do and it is our job not to "cater" to that feeling but rather to teach him what he can do, no matter how small a task it may be-like getting the remote. Steve and I agreed and decided to just keep reminding ourselves of the situation and try to stay calm.
Unfortunately, that is not as easy as it sounds. Steve is traveling again and just to make life a bit more complicated, we got the kids a full size bed to share in the nursery. Zoe had been out of sorts and missing her brother so she started coming to our bed last week as well. Turns out by Thursday night she has a fever of 102.7 degrees! Anyway, something had to give and in the best interest of mom and dad (and therefore the children) the big bed is no longer for little bodies! Last night was hell. I don't think Alex slept more than 2 hours and was crying, begging to come sleep with us. At one point, he was on the floor, throwing his toys into the hall and said "I hate you Mom!" So far tonight has gone much better and my fingers are crossed!!
Just to add fuel to the fire, Steve, Alex and I toured a local special needs preschool. Most everyone we spoke to that knew of the school had positive things to say about it but Steve and I did not "feel the love". Now we are completely torn about what to do for the upcoming school year. Do we get an advocate for Alex and keep him in his last school? Do we send him to this special needs school? Do we keep him home? AUGHHHHH!!! I asked him tonight which school would he like to go to this fall and he said "the one Zoe goes to." Which is a wonderful choice if only we could afford it. Our savings is being depleted and we just maxxed out our FSA monies for the year, which means we have to pay "out of pocket" for all remaining copays, meds, etc for the year!!! And our dog has found 3 new holes in our fence and is running through the neighborhood!!
Okay, well I'm stressed now but at least you can share my pain. I'm exhausted AGAIN and just want to sleep for days!
God bless!
G
After a long night, Alex had his dad carry him to the couch. Then he asked Steve to cover his feet with the blanket that was on him. Then he asked Steve to hand him the remote which was on his legs. Steve immediately took me outside and expressed his frustration. He was able to identify the problem as this: when we were going through treatments there was a plan; a beginning and an end to look forward to. Now there is just waiting-INTERMINABLE waiting!!!! He said that the couch incident really brought it home and asked me if I felt the same way. To which I just laughed and reminded him that I am HOME and yes, I feel the same way. I also reminded Steve that Alex has been betrayed by his body and believes that he really can't do ANYTHING. As an example, last week after two days of trying to have a BM, Alex was on the toilet again and we asked him to really push. He cried out "I CAN'T, I CAN'T DO ANYTHING!!!!" OMG, what a glimpse into how he feels about his body huh? Anyway, my point to Steve was this-that since he has been betrayed by his body; he has forgotten what he can do and it is our job not to "cater" to that feeling but rather to teach him what he can do, no matter how small a task it may be-like getting the remote. Steve and I agreed and decided to just keep reminding ourselves of the situation and try to stay calm.
Unfortunately, that is not as easy as it sounds. Steve is traveling again and just to make life a bit more complicated, we got the kids a full size bed to share in the nursery. Zoe had been out of sorts and missing her brother so she started coming to our bed last week as well. Turns out by Thursday night she has a fever of 102.7 degrees! Anyway, something had to give and in the best interest of mom and dad (and therefore the children) the big bed is no longer for little bodies! Last night was hell. I don't think Alex slept more than 2 hours and was crying, begging to come sleep with us. At one point, he was on the floor, throwing his toys into the hall and said "I hate you Mom!" So far tonight has gone much better and my fingers are crossed!!
Just to add fuel to the fire, Steve, Alex and I toured a local special needs preschool. Most everyone we spoke to that knew of the school had positive things to say about it but Steve and I did not "feel the love". Now we are completely torn about what to do for the upcoming school year. Do we get an advocate for Alex and keep him in his last school? Do we send him to this special needs school? Do we keep him home? AUGHHHHH!!! I asked him tonight which school would he like to go to this fall and he said "the one Zoe goes to." Which is a wonderful choice if only we could afford it. Our savings is being depleted and we just maxxed out our FSA monies for the year, which means we have to pay "out of pocket" for all remaining copays, meds, etc for the year!!! And our dog has found 3 new holes in our fence and is running through the neighborhood!!
Okay, well I'm stressed now but at least you can share my pain. I'm exhausted AGAIN and just want to sleep for days!
God bless!
G
Monday, August 06, 2007
Monday August 6th-Wonderful Weekend!!
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
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
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
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