Yesterday he had the motility test and we will find out this morning what is going on. The test was exhausting for him, as he had to get out of the chair in the nuclear medicine room 7 times and get up on the X Ray machine "gurney" and be slid into the machine (like and MRI tube-his head did not go in thankfully), then have a 1 minute picture taken and then off and back onto the chair. Even with help (fortunately they allowed me to be right there for the entire procedure)- each time got a little more difficult. When the third time came around he had a mini meltdown- "I just want to go back to my room and have Gatorade" and a little cry. We worked our way through this (bribery is a great motivator, expensive for grandpa, but useful and necessary) and the rest of the procedure went well. We had the movie "Despicable Me on the whole time (which I now know by heart) and this helped focus his attention away from the task of the procedure. Good idea DeVos team!
Back in his room we ordered a grilled cheese sandwich (they make great gc sandwiches here) , he drank some Gatorade with his meds, and tried to go to sleep. Unfortunately it all came back up shortly after that and he did go to sleep.Never did eat the sandwich. He rested most of the rest of the day.
Susan showed up at 1:30 for his school lesson and he was too tired to rally. This gave us a good opportunity to talk about about where we are on his education trail, how I can fill in and daily keep him engaged, what to concentrate on, etc. A good and needed session. Thanks for your flexibility and generosity Susan.
Thursday proves that we are not on our time. We, Willem's support team, can plan all the events, classes, etc., but his health, which is not in any of Our hands whatsoever but in His, dictates what and when we will be doing what and when we can. If that makes sense it will be a miracle. Hopefully you get it.
I will do a short update form the hospital if I find out results this morning and if I can figure out how to do it on my new IPhone. (It's a little scary to have a Smart phone that smarter than me!)
Take care all and your thoughts and prayers are needed, appreciated, and felt. Keep it up- It is going to be a roller coaster ride through his recovery, key word Recovery!
Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.
Friday, September 30, 2011
Wednesday, September 28, 2011
What A Difference a Day Makes
For Tuesday 9/28 and Weds 9/29
Night and day difference in appearance, attitude, and general well being on Tuesday and this morning as well.
Tuesday- He had PT in the morning, was putting together a Bionical on his own while sitting in the chair when I walked in, then he read for awhile and took a little rest. Susan Meltzer from Meadowbrook Elem. came and met Sarah the hospital teacher. They are working closely together. She then spent about an hour with Willem. All is well on the education front.
Willem's appetite has returned pretty much full on. The problem is keeping it down. Feeding is supposed to be done very slowly and controlled. Some how he keeps finding ways to get more food more quickly than he can handle and up it comes as well as just keeping it down when he does eat slowly Last night about 8:30 the gastro doc. was in and felt his stomach, intestines, liver, and kidneys and said they were soft which is a good thing. . There is definitely a problem here that the doctors are watching. Tomorrow, Thursday, he is going to have a Motility test. He will eating some radioactive pellets, then have pictures taken as they work their way through his digestive system. They will take pictures every 15 minutes for 90 minutes.
Hopefully this will show them what is happening where. I will report the findings tomorrow.
Today, Weds., was another good attitude day and he read, did some Bionical work, and we talked. He is such a polite little boy and the staff love him because he is so sweet. He is getting the best care possible for sure. These are some dedicated people for sure. Thank you all! We can not say that enough. We are daily grateful. See you all tomorrow!
Night and day difference in appearance, attitude, and general well being on Tuesday and this morning as well.
Tuesday- He had PT in the morning, was putting together a Bionical on his own while sitting in the chair when I walked in, then he read for awhile and took a little rest. Susan Meltzer from Meadowbrook Elem. came and met Sarah the hospital teacher. They are working closely together. She then spent about an hour with Willem. All is well on the education front.
Willem's appetite has returned pretty much full on. The problem is keeping it down. Feeding is supposed to be done very slowly and controlled. Some how he keeps finding ways to get more food more quickly than he can handle and up it comes as well as just keeping it down when he does eat slowly Last night about 8:30 the gastro doc. was in and felt his stomach, intestines, liver, and kidneys and said they were soft which is a good thing. . There is definitely a problem here that the doctors are watching. Tomorrow, Thursday, he is going to have a Motility test. He will eating some radioactive pellets, then have pictures taken as they work their way through his digestive system. They will take pictures every 15 minutes for 90 minutes.
Hopefully this will show them what is happening where. I will report the findings tomorrow.
Today, Weds., was another good attitude day and he read, did some Bionical work, and we talked. He is such a polite little boy and the staff love him because he is so sweet. He is getting the best care possible for sure. These are some dedicated people for sure. Thank you all! We can not say that enough. We are daily grateful. See you all tomorrow!
Tuesday, September 27, 2011
Grouchy, Grumpy, Wimpy
We all have those days and Willem had one yesterday. This does not mean progress was not made. It was.
He slept until 9:30 when the nurses woke him to do their thing (vitals, meds, etc)
Breakfast was 2 pieces of bacon, a piece of Fench toast, Gatorade, and a little Vital Jr. This was given to him VERY slowly and it worked. He is not allowed any soda pop of any kind and no milk- Gatorade (which he likes a lot), and water only and this is also given to him slowly.
He then went to PT for a session there. He played a little basketball, walked, and "jumped on the big ball".
Sarah Smith the hospital teacher came in the spent an hour with him for his first official education session. They read, drew, and worked on some math. Willem got very frustrated because he was trying to add 2 disit numbers and was doing it diagonally as opposed to vertically. Sarah gentle showed him what was a better way than diagonally and he got frustrated and upset. They worked through that and the session ended.
Lunch came it was a chicken sandwich- NOT grilled cheese. He had a little melt down and was very upset. While he waited for the grilled cheese (the dietary staff have most accommodating and helpful with our requests-Thank You), he ate a littler of the chicken and one slice of the bread. He ate the whole gc sandwich and his tomato soup. He then fell asleep and was sleeping at 3:00 when I arrived. We got him out of bed and to the chair which is good for him. He was unhappy with it. but we won this battle. He thought he was going to throw up while he was moving, but we did some deep breathing and he did not. He fell asleep.
Mom, the kids, and grandma showed up and he pretty much slept through their entire stay. Mary had brought him a Little Caeser's pizza he had requested and he did not eat-just slept in his bed. They left around 7:00.
He received his weekly chemo at midnight through his port so we will see what the day brings.
Today is another education day with Susan Meltzer from Meadowbrook Elem coming at 1:30. She and Sarah will be working closely together to get Willem up to 4th grade speed. Willem is a bright young boy and Sarah thinks it will not be aproblem "keeping him up with the other kids"
Significant yesterday- He moved, he thought, he ate, he DID NOT vomit! This is a good day even if he didn't enjoy it. (sorry this ended up here-I hit something and it moved on me and I can't move it back)
Medically- all numbers continue to track positive. It is just going to be a long slow process to recovery. The good thing here is we are talking recovery!
Thanks to all for thoughts and prayers- he needs them all.
He slept until 9:30 when the nurses woke him to do their thing (vitals, meds, etc)
Breakfast was 2 pieces of bacon, a piece of Fench toast, Gatorade, and a little Vital Jr. This was given to him VERY slowly and it worked. He is not allowed any soda pop of any kind and no milk- Gatorade (which he likes a lot), and water only and this is also given to him slowly.
He then went to PT for a session there. He played a little basketball, walked, and "jumped on the big ball".
Sarah Smith the hospital teacher came in the spent an hour with him for his first official education session. They read, drew, and worked on some math. Willem got very frustrated because he was trying to add 2 disit numbers and was doing it diagonally as opposed to vertically. Sarah gentle showed him what was a better way than diagonally and he got frustrated and upset. They worked through that and the session ended.
Lunch came it was a chicken sandwich- NOT grilled cheese. He had a little melt down and was very upset. While he waited for the grilled cheese (the dietary staff have most accommodating and helpful with our requests-Thank You), he ate a littler of the chicken and one slice of the bread. He ate the whole gc sandwich and his tomato soup. He then fell asleep and was sleeping at 3:00 when I arrived. We got him out of bed and to the chair which is good for him. He was unhappy with it. but we won this battle. He thought he was going to throw up while he was moving, but we did some deep breathing and he did not. He fell asleep.
Mom, the kids, and grandma showed up and he pretty much slept through their entire stay. Mary had brought him a Little Caeser's pizza he had requested and he did not eat-just slept in his bed. They left around 7:00.
He received his weekly chemo at midnight through his port so we will see what the day brings.
Today is another education day with Susan Meltzer from Meadowbrook Elem coming at 1:30. She and Sarah will be working closely together to get Willem up to 4th grade speed. Willem is a bright young boy and Sarah thinks it will not be aproblem "keeping him up with the other kids"
Significant yesterday- He moved, he thought, he ate, he DID NOT vomit! This is a good day even if he didn't enjoy it. (sorry this ended up here-I hit something and it moved on me and I can't move it back)
Medically- all numbers continue to track positive. It is just going to be a long slow process to recovery. The good thing here is we are talking recovery!
Thanks to all for thoughts and prayers- he needs them all.
Monday, September 26, 2011
Eating, Walking, Talking, Laughing, Throwing Up
Good Morning to All
All of the above continue to happen. The last one, believe it or not, is not a huge concern of the doctors. They know the HLH is still in his system and has upset his digestion in the intestines. If it continues, they will do another scope later this week.
Yesterday at noon he ate a grilled cheese sandwich and tomato soup (his "regular" now), then a couple of bite size Oreos,; then for dinner he had pizza, a piece of peach, some Vital Jr., and pop. All this was in his system until 7:00 pm when it came back up (I find it interesting it happened about 20 minutes after I left and it did not happen when Mary was there from noon until 3:00. Things that make you go mm........
I have to go on Wyatt's field trip to Art Prize. More later this afternoon.
I have an interesting story about Rich DeVos that happened at our church Sunday.
Your support is daily appreciated. We are grateful beyond all measure. Thank You
All of the above continue to happen. The last one, believe it or not, is not a huge concern of the doctors. They know the HLH is still in his system and has upset his digestion in the intestines. If it continues, they will do another scope later this week.
Yesterday at noon he ate a grilled cheese sandwich and tomato soup (his "regular" now), then a couple of bite size Oreos,; then for dinner he had pizza, a piece of peach, some Vital Jr., and pop. All this was in his system until 7:00 pm when it came back up (I find it interesting it happened about 20 minutes after I left and it did not happen when Mary was there from noon until 3:00. Things that make you go mm........
I have to go on Wyatt's field trip to Art Prize. More later this afternoon.
I have an interesting story about Rich DeVos that happened at our church Sunday.
Your support is daily appreciated. We are grateful beyond all measure. Thank You
Saturday, September 24, 2011
Incredible Support Team
Willem update first:
Friday 9/23-
When I arrive around 11:15 Erin was there and so were a few crumbs left from a Subway sandwich.
The three of us went for a couple of laps around the 9th floor and Willem was encouraged by different staff we encountered all the way around. He then played a bit in the playroom and lunch arrive- PIZZA and chocolate cake!
He ate it too quickly or perhaps it did not agree with him and it came back up. So, this means small pieces of food will be given to him for all meals and that he still has some recovery yet. The fact that he is hungry is the good thing to take from this.
Last night we attended a spaghetti dinner at Trinity CRC church in Grandville. Great food, great fellowship, great turnout. Thanks to all who came AND to the awesome folks who organized, contributed to (I ate way too much cake and "mud pies"), and worked the event. Our hearts are filled with gratitude.
Erin, Tom, Mary, and I ate totally blown away and appreciative of the support, love, and willingness of others to help. It truly is a blessing and we humbled. Thank you is not enough.
I will share the names of all who rolled up their sleeves for the event later today. Greg, who works with Tom at the hotel was the main organizer-Huge thanks to you and your family- wife, sister, Mom, and .... (Greg or somebody in the family- please send me names of family and friends who helped etc). I would like to apologize to you all for not mentioning the dinner in the blog the last couple of days- I blew the opportunity to publicize the event-Sorry. It did very well anyway for sure.
The support team at Meadowbrook is in full swing- thanks to Mrs. Overway (Wyatt's 2nd grade teacher), Mrs. Kemperman (Willem's 4th grade teacher), Mrs Lorimer (school counselor) and husband for all showing up as well as and any others I missed. You are incredible in your support, interest, and giving of your time, heart, and energy.
I spoke with Sarah Smith for the hospital (she is the education liaison/coordinator person there). She told me it is very rare indeed for a school to send a teacher to the hospital to teach! Mrs. Meltzer and all the rest of you, including Principal Tim Shaw- thank you.
Enjoy your weekend- Go Blue! (I did that because I can!)
Friday 9/23-
When I arrive around 11:15 Erin was there and so were a few crumbs left from a Subway sandwich.
The three of us went for a couple of laps around the 9th floor and Willem was encouraged by different staff we encountered all the way around. He then played a bit in the playroom and lunch arrive- PIZZA and chocolate cake!
He ate it too quickly or perhaps it did not agree with him and it came back up. So, this means small pieces of food will be given to him for all meals and that he still has some recovery yet. The fact that he is hungry is the good thing to take from this.
Last night we attended a spaghetti dinner at Trinity CRC church in Grandville. Great food, great fellowship, great turnout. Thanks to all who came AND to the awesome folks who organized, contributed to (I ate way too much cake and "mud pies"), and worked the event. Our hearts are filled with gratitude.
Erin, Tom, Mary, and I ate totally blown away and appreciative of the support, love, and willingness of others to help. It truly is a blessing and we humbled. Thank you is not enough.
I will share the names of all who rolled up their sleeves for the event later today. Greg, who works with Tom at the hotel was the main organizer-Huge thanks to you and your family- wife, sister, Mom, and .... (Greg or somebody in the family- please send me names of family and friends who helped etc). I would like to apologize to you all for not mentioning the dinner in the blog the last couple of days- I blew the opportunity to publicize the event-Sorry. It did very well anyway for sure.
The support team at Meadowbrook is in full swing- thanks to Mrs. Overway (Wyatt's 2nd grade teacher), Mrs. Kemperman (Willem's 4th grade teacher), Mrs Lorimer (school counselor) and husband for all showing up as well as and any others I missed. You are incredible in your support, interest, and giving of your time, heart, and energy.
I spoke with Sarah Smith for the hospital (she is the education liaison/coordinator person there). She told me it is very rare indeed for a school to send a teacher to the hospital to teach! Mrs. Meltzer and all the rest of you, including Principal Tim Shaw- thank you.
Enjoy your weekend- Go Blue! (I did that because I can!)
Thursday, September 22, 2011
And the Good Beat Goes On
Let's start with Weds 9/21:
Four (4) laps around floor 9. Normal gait (heal to toe) - Good stuff
Docs continue to be pleased with his progress. It is a process for sure!
The docs did the procedure to take out Broviac and put in the port(as described on 9/20) All went well and when he woke up in the procedure room, before going back to his room, he opened his eyes and with me staring right at him he said, "Grilled Cheese Sandwich". Because of the procedure he could not eat after midnight and before he went down he had requested a grilled cheese with tomato soup. Upon return, about 40 minutes after waking up, he ate an entire sandwich and I fed him most of the soup. He ate slowly and it stayed down.He then put a Bionical thing together, order spaghetti and meatballs for dinner and fell asleep.
Thursday 9/22-today
Sat in chair, out of bed, for 2.5 hours (new record!)
Went to PT therapy gym and rode a bike. Played in the play room for awhile as well
Ate lunch too quickly and maybe too much and threw it up. He is hungry and just starts grabbing and stuffing his mouth. Lesson learned hopefully him and definitely for us. This is really a good sign as he is hungry, is eating, and is getting stronger. His request at 4:30 was for a "cheese burger
in paradise"- a Jimmy Buffet song the nurses and I were singing to him when we delivered his cheesburger with mustard, ketchup, and American cheese
(we had fun doing it even if he did not fully appreciate it). He was eating this as I left for Wyatt's soccer practice.
Willem is slowly being returned to us as his real personality (not drug induced) begins to re emerge. He is now back to being the very polite boy he is, smiling more everyday, and daily more alert and with it.
Hospital school starts for him next Tuesday- He is ready for sure. He wants to see his friends at school, Cub Scouts, and soccer. This is all good.
I want all to know Erin is the glue holding the family together and the glue is very strong. It is a daily challenge. but she is up to the task.Some days are better than others of course, but for now we are all doing our thing and watching the miracle of recovery. We are buoyed by this miracle and what a joy it is to behold!
We still have a long way to go so please keep Willem in your thoughts and most importantly your prayers-Thank and Take Care Go HUG YOUR CHILD!.
Four (4) laps around floor 9. Normal gait (heal to toe) - Good stuff
Docs continue to be pleased with his progress. It is a process for sure!
The docs did the procedure to take out Broviac and put in the port(as described on 9/20) All went well and when he woke up in the procedure room, before going back to his room, he opened his eyes and with me staring right at him he said, "Grilled Cheese Sandwich". Because of the procedure he could not eat after midnight and before he went down he had requested a grilled cheese with tomato soup. Upon return, about 40 minutes after waking up, he ate an entire sandwich and I fed him most of the soup. He ate slowly and it stayed down.He then put a Bionical thing together, order spaghetti and meatballs for dinner and fell asleep.
Thursday 9/22-today
Sat in chair, out of bed, for 2.5 hours (new record!)
Went to PT therapy gym and rode a bike. Played in the play room for awhile as well
Ate lunch too quickly and maybe too much and threw it up. He is hungry and just starts grabbing and stuffing his mouth. Lesson learned hopefully him and definitely for us. This is really a good sign as he is hungry, is eating, and is getting stronger. His request at 4:30 was for a "cheese burger
in paradise"- a Jimmy Buffet song the nurses and I were singing to him when we delivered his cheesburger with mustard, ketchup, and American cheese
(we had fun doing it even if he did not fully appreciate it). He was eating this as I left for Wyatt's soccer practice.
Willem is slowly being returned to us as his real personality (not drug induced) begins to re emerge. He is now back to being the very polite boy he is, smiling more everyday, and daily more alert and with it.
Hospital school starts for him next Tuesday- He is ready for sure. He wants to see his friends at school, Cub Scouts, and soccer. This is all good.
I want all to know Erin is the glue holding the family together and the glue is very strong. It is a daily challenge. but she is up to the task.Some days are better than others of course, but for now we are all doing our thing and watching the miracle of recovery. We are buoyed by this miracle and what a joy it is to behold!
We still have a long way to go so please keep Willem in your thoughts and most importantly your prayers-Thank and Take Care Go HUG YOUR CHILD!.
Tuesday, September 20, 2011
Another Good Day
Today Willem walked, ate 2 chicken McNuggets and some fries (I know and we don't care-he's eating- the asparagus can wait!), another 1/4 of the formentioned famous Subway sandwich, slept (post Chemo day), and while doing all that his numbers continue to track upward and positive. We are greatly encouraged as is Dr. C.
Good talk with Dr. Cornelius this morning. He is going to put a port in lieu of the Broviak (sp.?) which he now has, in his chest. The port is more mobile and flexible which is good as Willem moves more. Dr. C is going to lower his morphine and wean Willem off by using methadone, a common process in this sort of situation. The next big move is to take away the IV of "food" he has had for weeks. This process will begin soon. (I do not remember the exact time table- but Dr. C want it done sooner rather than later).
We met with Michelle Lorimer, the counselor at MeadowBrook Elem. (Forest Hills schools) and she gave us a huge banner with tons of signatures of all the fourth graders in his school and then it went to the school ice cream social and lots of other kids and staff signed it. Gifts were given to the family (Erin, Lili, and Wyatt as well as Willem, and gift cards were also presented to the family from the staff. Thank you all at MB Elem- You are awesome.
Speaking of awesome, Susan Meltzer, a third grade part time teacher @ MB has volunteered to come to the hospital twice a week and spend time with Willem to keep him at up to speed as much as possible. She will work closely with Shannon Kemperman, his fourth grade teacher to keep Willem current on his fourth grade curriculum. (Mrs. Kemperman has three kids under the age of 6 and needs to be home after school!) Thank you Mrs Meltzer and Mrs Kemperman for your efforts to date. Willem is excited to begin learning.
What Willem most wants is to get back to school and see and be with his friends. Our goal is work on this to get him to do the things needed to exit the hospital. Eat more everyday, exercise daily to gain strength and coordination (balance), and use his brain through games, sessions with Mrs. Meltzer, reading to him and he reading to us, etc.
The amazing thing is what we are talking about now compared to what we were talking about a couple of weeks ago, or even last week. The process of recovery is almost as surreal as the downward spiral into sickness. The former is a whole lot more fun!
Take Care all and thank you for your daily thoughts and prayers. Please don't stop!
Good talk with Dr. Cornelius this morning. He is going to put a port in lieu of the Broviak (sp.?) which he now has, in his chest. The port is more mobile and flexible which is good as Willem moves more. Dr. C is going to lower his morphine and wean Willem off by using methadone, a common process in this sort of situation. The next big move is to take away the IV of "food" he has had for weeks. This process will begin soon. (I do not remember the exact time table- but Dr. C want it done sooner rather than later).
We met with Michelle Lorimer, the counselor at MeadowBrook Elem. (Forest Hills schools) and she gave us a huge banner with tons of signatures of all the fourth graders in his school and then it went to the school ice cream social and lots of other kids and staff signed it. Gifts were given to the family (Erin, Lili, and Wyatt as well as Willem, and gift cards were also presented to the family from the staff. Thank you all at MB Elem- You are awesome.
Speaking of awesome, Susan Meltzer, a third grade part time teacher @ MB has volunteered to come to the hospital twice a week and spend time with Willem to keep him at up to speed as much as possible. She will work closely with Shannon Kemperman, his fourth grade teacher to keep Willem current on his fourth grade curriculum. (Mrs. Kemperman has three kids under the age of 6 and needs to be home after school!) Thank you Mrs Meltzer and Mrs Kemperman for your efforts to date. Willem is excited to begin learning.
What Willem most wants is to get back to school and see and be with his friends. Our goal is work on this to get him to do the things needed to exit the hospital. Eat more everyday, exercise daily to gain strength and coordination (balance), and use his brain through games, sessions with Mrs. Meltzer, reading to him and he reading to us, etc.
The amazing thing is what we are talking about now compared to what we were talking about a couple of weeks ago, or even last week. The process of recovery is almost as surreal as the downward spiral into sickness. The former is a whole lot more fun!
Take Care all and thank you for your daily thoughts and prayers. Please don't stop!
Subscribe to:
Posts (Atom)