When we got home from the ortho....with a "sock" over it to keep food and dirt out of it.
Riding his rocket!!
SO BIG! ;)
Saturday, March 29, 2008
The pics....as promised
Here are the pics of the little guy. He is getting around fairly well with only less than 24 hours with it on.....he is doing a great job.
When we got home from the ortho....with a "sock" over it to keep food and dirt out of it.
Riding his rocket!!
SO BIG! ;)
When we got home from the ortho....with a "sock" over it to keep food and dirt out of it.
Riding his rocket!!
SO BIG! ;)
Friday, March 28, 2008
Always Exciting....
Yes, it is always exciting around our house!!!
So, yesterday...Anderson had his 1st speech therapy at CHOC! We stopped at Starbucks on our way, then we went to speech. After speech we went to "Prehistoric Pets" in Huntington Beach. It is a pet store, 10,000 square feet, full of reptiles. They had a snake that weighed over 170 lbs, and was thicker than my Italian thighs (no joke!) Kaitlyn and Ryan got to feed the turtles and hold a snake! What fun!!!! It was great. Anderson was "walking around" checking everything out, loving it as well.
After the pet store, we went to Chick-fil-A for lunch. We had lunch, ate ice cream cones (just to celebrate our fun day)...and then played on the in door playground. Anderson climbed up the play ground, with me 6 inches behind him (remember...he still can't fall!) We played up there, watched the big kids run around having fun. Okay...we are done, headed down the slide to go home.....Anderson sitting in my lap....squeals of delight...then, screams. OHHH, the same scream that Ryan let out when he fell off Mima's bed and dislocated his shoulder the night b/4 Anderson was born. Anderson's leg got "caught" in a frog position going on the slide. OH #$^$%!!! I calm Andreson down and try to put him down, he will not put weight on the leg. OH NO! So, I start freaking out, get Kaitlyn and Ryan to the car and start crying as I call the peds office. Our ped sees us, we run over there.....they want Xrays. I take the Kaitlyn and Ryan to Bridgit's house (thank you Bridgit!!), then take Anderson for Xrays. Back to peds office.....our doctor thinks it looks "okay", but 1 area looks a little off and he wants to splint Anderson's leg. He said that sometimes it will take several days for a pediatric fracture to show up. So, off we go. By the time we get to Bridgit's house to pick up Kaitlyn and Ryan...Anderson has his splint off. OH BROTHER, this is not going to work!
We do the best we can for the next several hours and Anderson goes to sleep early b/c he had no nap. I go out for Mom's night out with my Mom's group. Bridgit and I ride together....talk to her husband, Neil (ortho surgeon). He recommends based on my description of what happened, what the Xrays said (or lack of...did not have them for Neil to read, he was going off experience and how it happened)...Neil thought we should see an ortho surgeon today, he thought there was more to it. THANK YOU NEIL!
So...today, I take Anderson to his ortho surgeon's office. Lets say that he is now in a FULL LEG cast!! Yes, folks...that is right. Anderson broke his tibia. Neil and Anderson's ortho told us that THIS IS A COMMON thing to happen to kids while riding on parents' laps down a slide....happens a lot!! CRAP, now you tell me! The surgeon today could see an area on the XRAY that was swollen and indicative of a break. Full cast for 3 weeks...it is a dark blue in case you are wondering.
Anderson is doing MUCH better since it was casted. Earlier today, he was trying to get around, frustrated, crying in pain, and standing like a flamingo!!
This will make you laugh (as if the above probably did not have you laughing!)...as we pull into the ortho's office, Anderson has a BLOW OUT diaper!! I will spare the details, but lets say...thank goodness my car had not been cleaned out for a few weeks...b/c Anderson wore a sweatshirt (that has been sitting in my car for a week) with a diaper into the appt (after I gave him a PURELL bath in the parking lot), and I had to change my shirt to a sweater that was in the car...enough said~!! Good thing my car was a mess with these "extra" clothes in it!
When the surgeon said he would have to cast it....I asked if I could wash his leg off b/c he had a blow out diaper, I am a germ-o-phobe and could not stand the thought of a cast going on that leg for 3 weeks w/o washing it ;) The ortho laughed and said of course. I bathed Anderson's leg in their sink! As I told Neil and Bridgit tonight....as Neil said " That is classic!" So...thought y'all would laugh about that part too!
I am laughing instead of crying at this point. 3 weeks.....we can live with a cast for 3 weeks. Hoping it will keep him a little bit slower and not as likely to bump his head.....uhhh...maybe?
Again, Anderson is the bravest little thing.........
GOOD NIGHT!!!! Picture of Anderson in the cast tmr!
So, yesterday...Anderson had his 1st speech therapy at CHOC! We stopped at Starbucks on our way, then we went to speech. After speech we went to "Prehistoric Pets" in Huntington Beach. It is a pet store, 10,000 square feet, full of reptiles. They had a snake that weighed over 170 lbs, and was thicker than my Italian thighs (no joke!) Kaitlyn and Ryan got to feed the turtles and hold a snake! What fun!!!! It was great. Anderson was "walking around" checking everything out, loving it as well.
After the pet store, we went to Chick-fil-A for lunch. We had lunch, ate ice cream cones (just to celebrate our fun day)...and then played on the in door playground. Anderson climbed up the play ground, with me 6 inches behind him (remember...he still can't fall!) We played up there, watched the big kids run around having fun. Okay...we are done, headed down the slide to go home.....Anderson sitting in my lap....squeals of delight...then, screams. OHHH, the same scream that Ryan let out when he fell off Mima's bed and dislocated his shoulder the night b/4 Anderson was born. Anderson's leg got "caught" in a frog position going on the slide. OH #$^$%!!! I calm Andreson down and try to put him down, he will not put weight on the leg. OH NO! So, I start freaking out, get Kaitlyn and Ryan to the car and start crying as I call the peds office. Our ped sees us, we run over there.....they want Xrays. I take the Kaitlyn and Ryan to Bridgit's house (thank you Bridgit!!), then take Anderson for Xrays. Back to peds office.....our doctor thinks it looks "okay", but 1 area looks a little off and he wants to splint Anderson's leg. He said that sometimes it will take several days for a pediatric fracture to show up. So, off we go. By the time we get to Bridgit's house to pick up Kaitlyn and Ryan...Anderson has his splint off. OH BROTHER, this is not going to work!
We do the best we can for the next several hours and Anderson goes to sleep early b/c he had no nap. I go out for Mom's night out with my Mom's group. Bridgit and I ride together....talk to her husband, Neil (ortho surgeon). He recommends based on my description of what happened, what the Xrays said (or lack of...did not have them for Neil to read, he was going off experience and how it happened)...Neil thought we should see an ortho surgeon today, he thought there was more to it. THANK YOU NEIL!
So...today, I take Anderson to his ortho surgeon's office. Lets say that he is now in a FULL LEG cast!! Yes, folks...that is right. Anderson broke his tibia. Neil and Anderson's ortho told us that THIS IS A COMMON thing to happen to kids while riding on parents' laps down a slide....happens a lot!! CRAP, now you tell me! The surgeon today could see an area on the XRAY that was swollen and indicative of a break. Full cast for 3 weeks...it is a dark blue in case you are wondering.
Anderson is doing MUCH better since it was casted. Earlier today, he was trying to get around, frustrated, crying in pain, and standing like a flamingo!!
This will make you laugh (as if the above probably did not have you laughing!)...as we pull into the ortho's office, Anderson has a BLOW OUT diaper!! I will spare the details, but lets say...thank goodness my car had not been cleaned out for a few weeks...b/c Anderson wore a sweatshirt (that has been sitting in my car for a week) with a diaper into the appt (after I gave him a PURELL bath in the parking lot), and I had to change my shirt to a sweater that was in the car...enough said~!! Good thing my car was a mess with these "extra" clothes in it!
When the surgeon said he would have to cast it....I asked if I could wash his leg off b/c he had a blow out diaper, I am a germ-o-phobe and could not stand the thought of a cast going on that leg for 3 weeks w/o washing it ;) The ortho laughed and said of course. I bathed Anderson's leg in their sink! As I told Neil and Bridgit tonight....as Neil said " That is classic!" So...thought y'all would laugh about that part too!
I am laughing instead of crying at this point. 3 weeks.....we can live with a cast for 3 weeks. Hoping it will keep him a little bit slower and not as likely to bump his head.....uhhh...maybe?
Again, Anderson is the bravest little thing.........
GOOD NIGHT!!!! Picture of Anderson in the cast tmr!
Wednesday, March 26, 2008
SPEECH
Guess what....9 months in the waiting...Anderson is starting speech therapy at CHOC!!! The wait list for CHOC's speech therapy was 12-14 months when we got on the wait list. So, we are excited about only 9 months! So, our 1st day is tmr!!! Anderson has been in speech at Providence (a facility next door to CHOC). However, Regional Center (CA state early intervention program) and Anderson's PT/OT wanted him to be at CHOC for speech. We've had little angels at CHOC pushing for Anderson to get in....and our time has come. Sheila, Anderson speech therapist has been So SO kind to us. Since we noticed Anderson's delay in speech (around 9-12 months), Sheila started to "stop" by Anderson's therapy and give his PT tips on what to do to help Anderson. Those ideas were passed along to me. Sheila has continued to help me as much as she could...she has been another angel to Anderson. We are so fortunate that the opening at CHOC's speech program was with SHEILA!!! We are so so thrilled!!!
I was flattered by a phone call this week from Regional Center. I have been asked to be a Parent Advocate for the state for Chiari. So, if other parents in the area have children with a Chiari diagnosis, my contact info will be passed onto the family for them to contact me for an ear, advice, help, etc. So...I was honored they asked me to do this for them. It is my pleasure. I always said...whatever was wrong with Anderson, I would become that advocate....so, here is the beginning to my Chiari advocate career ;)
Kaitlyn and Ryan have been on Spring Break this week. It has been fun. Monday we went to the Marine Rescue Center....where they have wild seals that have been injured or abandoned and nursed to health, a KOI pond store, and an animal rescue center in Laguna Beach. Monday afternoon, Kaitlyn and Ryan had soccer practice. Then, on Tuesday, Anderson had speech, then we had several playdates and Kaitlyn's ballet class. Today, Anderson had PT/OT and then Kaitlyn and Ryan went to friends' houses. Whew....we've made blueberry muffins and pancakes for breakfast. What a fun fun week so far. Tmr....who knows what it will bring...more fun!
Blessings to all!
I was flattered by a phone call this week from Regional Center. I have been asked to be a Parent Advocate for the state for Chiari. So, if other parents in the area have children with a Chiari diagnosis, my contact info will be passed onto the family for them to contact me for an ear, advice, help, etc. So...I was honored they asked me to do this for them. It is my pleasure. I always said...whatever was wrong with Anderson, I would become that advocate....so, here is the beginning to my Chiari advocate career ;)
Kaitlyn and Ryan have been on Spring Break this week. It has been fun. Monday we went to the Marine Rescue Center....where they have wild seals that have been injured or abandoned and nursed to health, a KOI pond store, and an animal rescue center in Laguna Beach. Monday afternoon, Kaitlyn and Ryan had soccer practice. Then, on Tuesday, Anderson had speech, then we had several playdates and Kaitlyn's ballet class. Today, Anderson had PT/OT and then Kaitlyn and Ryan went to friends' houses. Whew....we've made blueberry muffins and pancakes for breakfast. What a fun fun week so far. Tmr....who knows what it will bring...more fun!
Blessings to all!
Thursday, March 20, 2008
CHECK THIS OUT!!
The improvements in Anderson are incredible. It is so much fun to watch him everyday.
Here is something for all of you!!! HAPPY EASTER!!
We have so many many things to be thankful for this Easter. We are truly blessed!
ENJOY!
Here is something for all of you!!! HAPPY EASTER!!
We have so many many things to be thankful for this Easter. We are truly blessed!
ENJOY!
Wednesday, March 19, 2008
1st day of THERAPY!!!
What a great day today!!!
First, Charlie came back from Europe today....about 4:30. We were ALL so so so happy to have him back at home.
Today was Kaitlyn and Ryan's last day of school b/4 spring break. It was a fun day of Spring parties and spring treats. What fun to have 11 days off school.....Mommy is excited!!
The best part was Anderson's therapy today!!!!!!!!! It was our 1st day back to occupational therapy (OT) and physical therapy (PT). Obviously, Charlie and I feel that we see changes in Anderson....but, then we wonder..are we just "looking" for these changes...and things are not that different? Well....NO!!! Today, Anderson's PT, Marissa (who is wonderful!!), came and got him for PT. We told her about the surgery and the success. She picked him up and thought he just "felt" stronger. She was excited to work with him today.
As Anderson was in PT, his old OT therapist, Jamie (who we love too), came to the waiting room to talk to me. She saw Anderson in the therapy room and wanted to hear what happened. Jamie was genuinely excited and happy for Anderson. Anderson brought her to tears...happy ones. Jamie is so sweet, we miss her as his therapist. But, we have a new one, Nancy OT, who will be great, I am sure.
Directly following PT, Anderson goes to OT (is anyone following this yet?) His PT, Marissa, came to the waiting room and told us what a great job he did...he felt stronger, stood more confidently, and took 5 steps instead of his typical 2 and collapse. Marissa was so cute...full of energy and excitement regarding Anderson.
Then, when Anderson was finished with OT....this great intern, Robin, brought Anderson out with his new OT, Nancy. Robin worked with Anderson for several weeks prior to his surgery (his new OT, Nancy only saw him 1 week prior to surgery, so harder for her to tell). Anyway....Robin told us that Anderson completed a task that the week prior to surgery...he COULD NOT DO!!! YES!!! I remember Robin telling me about this....Anderson was asked to drop an object on "target". He only did it for LARGE target prior to surgery and not consistently. Today, Anderson dropped an object on target 7/7 times to a small target!!! YAHOO!!!!! He could not drop to small target prior to surgery. WOW!!!
So, Robin told me she just got curious and wanted to see how Anderson would score on the test they use to evaluate him on his development since he improved in that 1 particular skill above. There are 2 parts to a fine motor skill evaluation....grasping and visual motor. Anderson's visual motor skill level remained the same (which is okay...hey, we are ONLY 2 week post op!) But....on his GRASPING skills (part 2 of the evaluation)....Anderson scored at a 10 month old level 1 month ago b/c he could not perform 2 tasks on the test. GUESS WHAT!!! He is doing those skills now...SO.....he is AGE APPROPRIATE on part 2 of the evaluation!!!! OMG!!! I was freaking out!! Prior to surgery Anderson was over 40% delayed in grasping, and today 0%!!!!!!!
On top of this good news, Anderson was having feeding problem (with gagging and not chewing properly). Well, Robin and his new OT, Nancy said he chewed 100% of the time. One of his goals set 1 month ago was to chew 75% of the time...SO HE HAS ALREADY MET THIS GOAL AS WELL!!!! OMG!!!!
Nancy OT (Anderson also has Nancy PT...so, this is how I am referencing them) told me that although she only saw Anderson 1 week prior to surgery, she too could tell a difference in him. She was thrilled they were going to have to write new goals for Anderson b/c he is meeting so many of them....these goals are only 1 month old!!!! And, we were gone for 2 weeks of the 1 month!!! AHHHHH, so happy!!!! I know that Anderson and Nancy OT will work great together and she will help him progress even further.
Robin, Marissa and Nancy OT all felt he was happier, engaged....just different.
All of the therapists seemed so encouraged from the surgery. They were ech so sweet....truly excited, truly happy. We are so blessed to have Dr. Frim as our surgeon and now a WONDERFUL team of therapists pushing Anderson.
Once again, Anderson was a ROCK STAR!! 2 weeks post op and the kiddo tolerated 2 hours of therapy back to back today. He certainly was tired and fussy (UNDERSTANDABLE) after surgery...but he did a GREAT GREAT job!
On Friday, Anderson will have PT with Nancy PT. Can't wait for her to work with him. She has seen him since he was 3 months old and had torticollis. She is wonderful and has been so patient with me as I would freak out every week wondering what was wrong with Anderson. Nancy PT always has a calming, kind way of working with me and Anderson. We just adore her. Again, we are so blessed to have these wonderful people around us right now!!! How lucky we are!!!
UPDATE - I also wanted to give an update to the surgery that I got from Dr. Frim while we were in the hospital. A detail, I forgot to add back then......one night during rounds, I asked Dr. Frim if it was typical to shrink everyone's cerebral tonsils. He said, No. He only does it in asymmetrical cases, like Anderson's. Dr. Frim then went on to further explain to Charlie and I that Anderson's left cerebral tonsil was blocking the 4th ventricle of Anderson's brain, limiting the flow of CSF. We got a copy of the operative report and it says the left cerebral tonsil was "directly mechanically occluding the 4th ventricle". HOLY COW!!! So, Dr. Frim shrunk the tonsil until the "normal" CSF flow could resume.....thank God for Dr. Frim!!!
Thought I would add this bit of info b/c it is quite incredible to think how uncomfortable this must have made Anderson ( I really have no idea and can't imagine)...and to think....how much he was ABLE to accomplish over the past 19 months with this problem. Anderson is such a brave and strong little boy. I am so very proud of him.
Anyway, I was in tears of joy today....the therapists saw what Charlie and I have been seeing for the past 2 weeks. AND, to think we are only 2 weeks post-op....can you imagine what else Anderson will do??
GOOD NIGHT!!
First, Charlie came back from Europe today....about 4:30. We were ALL so so so happy to have him back at home.
Today was Kaitlyn and Ryan's last day of school b/4 spring break. It was a fun day of Spring parties and spring treats. What fun to have 11 days off school.....Mommy is excited!!
The best part was Anderson's therapy today!!!!!!!!! It was our 1st day back to occupational therapy (OT) and physical therapy (PT). Obviously, Charlie and I feel that we see changes in Anderson....but, then we wonder..are we just "looking" for these changes...and things are not that different? Well....NO!!! Today, Anderson's PT, Marissa (who is wonderful!!), came and got him for PT. We told her about the surgery and the success. She picked him up and thought he just "felt" stronger. She was excited to work with him today.
As Anderson was in PT, his old OT therapist, Jamie (who we love too), came to the waiting room to talk to me. She saw Anderson in the therapy room and wanted to hear what happened. Jamie was genuinely excited and happy for Anderson. Anderson brought her to tears...happy ones. Jamie is so sweet, we miss her as his therapist. But, we have a new one, Nancy OT, who will be great, I am sure.
Directly following PT, Anderson goes to OT (is anyone following this yet?) His PT, Marissa, came to the waiting room and told us what a great job he did...he felt stronger, stood more confidently, and took 5 steps instead of his typical 2 and collapse. Marissa was so cute...full of energy and excitement regarding Anderson.
Then, when Anderson was finished with OT....this great intern, Robin, brought Anderson out with his new OT, Nancy. Robin worked with Anderson for several weeks prior to his surgery (his new OT, Nancy only saw him 1 week prior to surgery, so harder for her to tell). Anyway....Robin told us that Anderson completed a task that the week prior to surgery...he COULD NOT DO!!! YES!!! I remember Robin telling me about this....Anderson was asked to drop an object on "target". He only did it for LARGE target prior to surgery and not consistently. Today, Anderson dropped an object on target 7/7 times to a small target!!! YAHOO!!!!! He could not drop to small target prior to surgery. WOW!!!
So, Robin told me she just got curious and wanted to see how Anderson would score on the test they use to evaluate him on his development since he improved in that 1 particular skill above. There are 2 parts to a fine motor skill evaluation....grasping and visual motor. Anderson's visual motor skill level remained the same (which is okay...hey, we are ONLY 2 week post op!) But....on his GRASPING skills (part 2 of the evaluation)....Anderson scored at a 10 month old level 1 month ago b/c he could not perform 2 tasks on the test. GUESS WHAT!!! He is doing those skills now...SO.....he is AGE APPROPRIATE on part 2 of the evaluation!!!! OMG!!! I was freaking out!! Prior to surgery Anderson was over 40% delayed in grasping, and today 0%!!!!!!!
On top of this good news, Anderson was having feeding problem (with gagging and not chewing properly). Well, Robin and his new OT, Nancy said he chewed 100% of the time. One of his goals set 1 month ago was to chew 75% of the time...SO HE HAS ALREADY MET THIS GOAL AS WELL!!!! OMG!!!!
Nancy OT (Anderson also has Nancy PT...so, this is how I am referencing them) told me that although she only saw Anderson 1 week prior to surgery, she too could tell a difference in him. She was thrilled they were going to have to write new goals for Anderson b/c he is meeting so many of them....these goals are only 1 month old!!!! And, we were gone for 2 weeks of the 1 month!!! AHHHHH, so happy!!!! I know that Anderson and Nancy OT will work great together and she will help him progress even further.
Robin, Marissa and Nancy OT all felt he was happier, engaged....just different.
All of the therapists seemed so encouraged from the surgery. They were ech so sweet....truly excited, truly happy. We are so blessed to have Dr. Frim as our surgeon and now a WONDERFUL team of therapists pushing Anderson.
Once again, Anderson was a ROCK STAR!! 2 weeks post op and the kiddo tolerated 2 hours of therapy back to back today. He certainly was tired and fussy (UNDERSTANDABLE) after surgery...but he did a GREAT GREAT job!
On Friday, Anderson will have PT with Nancy PT. Can't wait for her to work with him. She has seen him since he was 3 months old and had torticollis. She is wonderful and has been so patient with me as I would freak out every week wondering what was wrong with Anderson. Nancy PT always has a calming, kind way of working with me and Anderson. We just adore her. Again, we are so blessed to have these wonderful people around us right now!!! How lucky we are!!!
UPDATE - I also wanted to give an update to the surgery that I got from Dr. Frim while we were in the hospital. A detail, I forgot to add back then......one night during rounds, I asked Dr. Frim if it was typical to shrink everyone's cerebral tonsils. He said, No. He only does it in asymmetrical cases, like Anderson's. Dr. Frim then went on to further explain to Charlie and I that Anderson's left cerebral tonsil was blocking the 4th ventricle of Anderson's brain, limiting the flow of CSF. We got a copy of the operative report and it says the left cerebral tonsil was "directly mechanically occluding the 4th ventricle". HOLY COW!!! So, Dr. Frim shrunk the tonsil until the "normal" CSF flow could resume.....thank God for Dr. Frim!!!
Thought I would add this bit of info b/c it is quite incredible to think how uncomfortable this must have made Anderson ( I really have no idea and can't imagine)...and to think....how much he was ABLE to accomplish over the past 19 months with this problem. Anderson is such a brave and strong little boy. I am so very proud of him.
Anyway, I was in tears of joy today....the therapists saw what Charlie and I have been seeing for the past 2 weeks. AND, to think we are only 2 weeks post-op....can you imagine what else Anderson will do??
GOOD NIGHT!!
Tuesday, March 18, 2008
Egg Hunt
Today was a fun day. Anderson had his 1st speech therapy since surgery. We were really late b/c there was an accident on the 55 and 22 (on our way to CHOC/Providence)...so, we only had 15 minutes of therapy to attend. But, Anderson went back with Summer (his therapist) with no problem.
Kaitlyn and Ryan had gymnastics, which was really fun. Ryan went to Jack's house after gymnastics, and Kaitlyn went to Greta's house with Emma too. Anderson stayed at home with Mima Lois playing and napping!!
Kaitlyn started ballet yesterday as well. She is taking lessons with Greta and Emma. The 3 of them were so cute together...they had a lot of fun.
Then, to top the day off, we went to an Easter egg hunt at Church. It was so much fun....games, candy, Easter bunny, crafts, snacks, and egg hunt. My friend, Nancy organizes this egg hunt for the kids ech year and does an amazing job!! We have been going since we moved to OC.
It was fun to see all of the Moms (at the egg hunt) who prayed for us, held a rosary dedication for Anderson, a mass in his honor, and a prayer service for him while we were away. Anderson could not quite understand while all of these Moms were coming up to him. It was so nice to hug ech of these Moms and tell them in person how much we appreciated what they did while we were away. The Moms group started bringing us dinners as well on Monday...what a HUGE help this has been for us!!!!
Lastly...tonight at dinner....I promise I thought I heard Anderson say "mmmmmm". YAHOO!!! Getting closer to ma, ma!!!!
Kaitlyn and Ryan had gymnastics, which was really fun. Ryan went to Jack's house after gymnastics, and Kaitlyn went to Greta's house with Emma too. Anderson stayed at home with Mima Lois playing and napping!!
Kaitlyn started ballet yesterday as well. She is taking lessons with Greta and Emma. The 3 of them were so cute together...they had a lot of fun.
Then, to top the day off, we went to an Easter egg hunt at Church. It was so much fun....games, candy, Easter bunny, crafts, snacks, and egg hunt. My friend, Nancy organizes this egg hunt for the kids ech year and does an amazing job!! We have been going since we moved to OC.
It was fun to see all of the Moms (at the egg hunt) who prayed for us, held a rosary dedication for Anderson, a mass in his honor, and a prayer service for him while we were away. Anderson could not quite understand while all of these Moms were coming up to him. It was so nice to hug ech of these Moms and tell them in person how much we appreciated what they did while we were away. The Moms group started bringing us dinners as well on Monday...what a HUGE help this has been for us!!!!
Lastly...tonight at dinner....I promise I thought I heard Anderson say "mmmmmm". YAHOO!!! Getting closer to ma, ma!!!!
Sunday, March 16, 2008
Sunday - Day 3 Home!
We continue to be so happy to be home. Every night....our bed looks so good!!!
Charlie left for Europe yesterday. He was able to shorten his trip, so he will be back on Wednesday. Poor guy....3 countries in 3 days. I hope he is getting some rest. He was in London today and he heads to Paris tmr. Shopping in London and Paris sounds dreamy to me right now, but I know it is the last place he wants to be ;) And for those of you who are thinking it....he has already told me that his trip is too short....so, no fun surprise purchases for me ;)!!! Next time.......
Tmr is the 1st day "back" to reality. Luckily, Charlie's Mom is here helping me. It has been great to have her. She has been a big, big help. Kaitlyn and Ryan go back to school (although, it is a short week b/c of Good Friday). Anderson will go back to his therapies this week. On Tuesday, Anderson will have speech, Wednesday he will have PT and OT. On Thursday, we go to speech again. Friday will be PT (we should do OT as well...but they do not have room for us to start OT on Friday for a few more weeks.) Whew!
This morning was so wonderful. Anderson slept 12 hours in his crib!!! AND...he woke up talking...not screaming and crying like the 20 months prior....but actually talking and HAPPY!! For once, it is like he woke up and was not "pissed" to be awake. He was happy to start his day. It was such a great start to our day!!
Anderson actually said "mmmm" today while he was crying. Hey, I will talk it!!! ;) Closer to ma, ma!
I am trying to get one of Anderson's new tricks on video to surprise all of you. But, he is more interested in the camera than his trick....so, let me see if I can get it tmr.
Yesterday afternoon, we went to the mall to get Anderson some new shoes. On the way home, I said..."Anderson, show Kaitlyn dance." That cute little thing shook his little booty in his car seat and kicked his legs. We were all cracking up and cheering. Now..that is something I need to get on video too. It was adorable.
Again, small improvements, but we are so happy with them. We feel so blessed to be where we are today. Everyday is so exciting around here.
Friday, March 14, 2008
HOME - Finally!
Yahoo!!! It is Friday, and we are home!!! We are home 1 day early!!!!!
WOW, it has been a busy, busy week. Kristen has been posting for us b/c we have been a little out of it. Anderson and I came down with the stomach flu on Tuesday (poor honey, recovering from brain surgery and then the flu!). On Wednesday, Charlie gets it. We were on pins and needles waiting for Kaitlyn and Ryan to get it. Knock on wood.....they still have NOT gotten it!!!! Hopefully, at this point, we are in the clear. We shall see.......
Yesterday, Anderson had his 10 day post-op appointment. It went well. When we got the good news, we were just ready to get on the next plane. We were able to change our tickets and take the last flight out of Chicago. We walked in our door around midnight PST. The kids slept most of the plane ride and went straight to bed. Our pillows NEVER looked so good. Everyone slept in their own beds....all night!!!
Anderson is doing super. Thank goodness that puking is over. We are still not quite sure during those days if he was puking b/c of the surgery, the pain, or the flu. Guess we will never know. It was very difficult to watch. Charlie and I felt we took 10 steps backwards as of Monday. IT was very frustrating. On Tuesday/Wednesday, Anderson was so weak, so hard to see. Thursday, Anderson started to rally. He really woke up and seemed to have more energy, more appetite, etc. Today....he has been busy as ever!!!! Thank God!
Since I was not able to post much this past week, I have not been able to write about all of the new things Anderson has started to do. Many of these things will seem so trivial and small.....but to Anderson, they are ech an accomplishment. Things we knew he could not do before...that he is doing now.
* he will "dance" to music...swinging his arms like a "boogie" motion
* his hands are more "open" rather than fisted
* he is chewing his food SO much better...he actually chews rather than just swallowing
* he is drinking out of a straw without spitting all of the juice all over himself (he has better control over his oral skills)
* he is making new sounds...most of them continue to be indistinct, but still new
* he is vocalizing over almost everything...points at something and then vocalizes
* he is reaching his arms straight up in the air (rarely would lift his arms over 90 degrees)
* more interested in books and television shows (I know, I know...but, it is good that he is interested and engaged in what is happening on the tv...not that tv is a "good" thing, but to hold Anderson's attention, is good. It never would hold his attention in the past.)
* pincher grasp is improving
* starting to feed himself with spoon/fork
Overall, he is much more engaged with what is happening around him. He is curious, adventurous, and exploring more than ever! He seems more alert. In the past 10 days, Anderson turned 20 months old, and he got a new tooth!! Thank goodness for all that pain medication, not too sure he felt that tooth come in ;) Ha, ha, ha!
We are so happy with the improvements we have seen in Anderson in only 10 short days. It has been so much fun to watch him grow and learn everyday.
The biggest challenge we have at this point is not allowing Anderson to fall. Dr. Frim does not want Anderson to fall back on his incision over the next several months. Tell ANY 20 month old not to fall back on their head...would be hard. Much less a 20 month old toddler learning to walk, explore, etc. Someone has to be RIGHT next to Anderson at ALL times. GULP. We are watching Anderson like crazy! Our hands are never too far from Anderson......
THANKS to everyone for all of the prayers, emails, and notes. As I have said b/4....we appreciate all each of you have done. Your notes and posts to us made us smile and they were something we looked forward to everyday. We are so thankful with the way everything turned out.....could not have gone better (okay, well, maybe we could have done without the stomach flu). Our prayers were answered. Now, we are praying that this surgery brings Anderson relief so he can just be a toddler...learning and growing. We continue to pray that this surgery provides Anderson with the opportunities he needs to catch up to run around and chase his brother and sister ;).
Now....the hope is here....waiting to see what Anderson will do next. Feel free to stay tuned to see what Anderson and the Mescher Family does next!
Today is Dr. Frim's birthday...HAPPY Birthday Dr. Frim!! ;) Thank you for all you have done!
WOW, it has been a busy, busy week. Kristen has been posting for us b/c we have been a little out of it. Anderson and I came down with the stomach flu on Tuesday (poor honey, recovering from brain surgery and then the flu!). On Wednesday, Charlie gets it. We were on pins and needles waiting for Kaitlyn and Ryan to get it. Knock on wood.....they still have NOT gotten it!!!! Hopefully, at this point, we are in the clear. We shall see.......
Yesterday, Anderson had his 10 day post-op appointment. It went well. When we got the good news, we were just ready to get on the next plane. We were able to change our tickets and take the last flight out of Chicago. We walked in our door around midnight PST. The kids slept most of the plane ride and went straight to bed. Our pillows NEVER looked so good. Everyone slept in their own beds....all night!!!
Anderson is doing super. Thank goodness that puking is over. We are still not quite sure during those days if he was puking b/c of the surgery, the pain, or the flu. Guess we will never know. It was very difficult to watch. Charlie and I felt we took 10 steps backwards as of Monday. IT was very frustrating. On Tuesday/Wednesday, Anderson was so weak, so hard to see. Thursday, Anderson started to rally. He really woke up and seemed to have more energy, more appetite, etc. Today....he has been busy as ever!!!! Thank God!
Since I was not able to post much this past week, I have not been able to write about all of the new things Anderson has started to do. Many of these things will seem so trivial and small.....but to Anderson, they are ech an accomplishment. Things we knew he could not do before...that he is doing now.
* he will "dance" to music...swinging his arms like a "boogie" motion
* his hands are more "open" rather than fisted
* he is chewing his food SO much better...he actually chews rather than just swallowing
* he is drinking out of a straw without spitting all of the juice all over himself (he has better control over his oral skills)
* he is making new sounds...most of them continue to be indistinct, but still new
* he is vocalizing over almost everything...points at something and then vocalizes
* he is reaching his arms straight up in the air (rarely would lift his arms over 90 degrees)
* more interested in books and television shows (I know, I know...but, it is good that he is interested and engaged in what is happening on the tv...not that tv is a "good" thing, but to hold Anderson's attention, is good. It never would hold his attention in the past.)
* pincher grasp is improving
* starting to feed himself with spoon/fork
Overall, he is much more engaged with what is happening around him. He is curious, adventurous, and exploring more than ever! He seems more alert. In the past 10 days, Anderson turned 20 months old, and he got a new tooth!! Thank goodness for all that pain medication, not too sure he felt that tooth come in ;) Ha, ha, ha!
We are so happy with the improvements we have seen in Anderson in only 10 short days. It has been so much fun to watch him grow and learn everyday.
The biggest challenge we have at this point is not allowing Anderson to fall. Dr. Frim does not want Anderson to fall back on his incision over the next several months. Tell ANY 20 month old not to fall back on their head...would be hard. Much less a 20 month old toddler learning to walk, explore, etc. Someone has to be RIGHT next to Anderson at ALL times. GULP. We are watching Anderson like crazy! Our hands are never too far from Anderson......
THANKS to everyone for all of the prayers, emails, and notes. As I have said b/4....we appreciate all each of you have done. Your notes and posts to us made us smile and they were something we looked forward to everyday. We are so thankful with the way everything turned out.....could not have gone better (okay, well, maybe we could have done without the stomach flu). Our prayers were answered. Now, we are praying that this surgery brings Anderson relief so he can just be a toddler...learning and growing. We continue to pray that this surgery provides Anderson with the opportunities he needs to catch up to run around and chase his brother and sister ;).
Now....the hope is here....waiting to see what Anderson will do next. Feel free to stay tuned to see what Anderson and the Mescher Family does next!
Today is Dr. Frim's birthday...HAPPY Birthday Dr. Frim!! ;) Thank you for all you have done!
Thursday, March 13, 2008
Heading Home!
Unfortunately, Charlie came down with the stomach flu yesterday which is why we have not heard from the Mescher family....
However, Anderson had his post-op appointment this morning and it went really well.
And, they were all able to change their flights and are HEADED HOME right now!!!
I'm sure it will be wonderful to sleep in their own beds tonight. Liz will post an update tomorrow.
Tuesday, March 11, 2008
Update from Chicago!
There have been no posts as Liz and Anderson both have the stomach bug! Ugh!
Everyone is doing well though and they will give us an update soon!
Monday, March 10, 2008
Monday
Looks like we may be on the mend. It was another very, very long night last night.
On the bright side....Kaitlyn, Ryan, Mima Sue and Popo Jim made it in yesterday. It was SO SO great to see them!! Kaitlyn and Ryan are in LOVE with the Ronald McDonald House. The playroom is their favorite...full of all kinds of toys, puzzles and books. Looks like it is straight out of Pottery Barn Kids catalog.
This morning there were a few flurries in the sky. The kids RAN outside (Ryan still in his jammies, but with a jacket on....) to try and catch some snow. They tried to catch some flakes on their tongues, and then they found a pile of snow from the big storm a few weeks ago...and they threw snowballs at Popo and Mima. Everyone was having so much fun!
Now Anderson.....poor guy, he had a very hard night last night. We got the new medication for anti-nausea and A was still throwing up. It seemed to us to be a pain problem. The motrin is wearing off at 5 hours, we can't give it to him until 6 hours. So, in that 5th hour, he starts to puke. Then, on top of it, the poor kid gets too much med in a syringe, that if he sees a syringe now, he starts gagging...regardless if you have put anything in his mouth!!
Anyway, at midnight, we had Mima Sue come to our room. We were headed to the ER with Anderson. The nurse had said if you give Anderson the new med 2 times, and he is still throwing up, to come to the ER. So...off we were headed, he did this....Well, a nice couple we met here, who have Chiari kiddos, saw us on our way out. They suggested we call the neurosurgeon group so they would know we were on our way in. The resident called us back and basically said to come in if we were concerned, but they would not be able to do much more than an IV fluid. The resident suggested we wait until 6 AM when Dr. Frim's whole staff would be there ( I guess this guy is not on Dr. Frim's staff)...and then, they would be able to help us more. Plus, the resident gave us a few more "things" to try to help manage Anderson's pain. So, we thought we would try them until the morning when we could talk to one of Dr. Frim's NPs. Ummm....did not work out (the residents latest suggestions!)
We talked to Amanda, 1 of Dr. Frim's NP (who we love!) this morning. She was able to increase Anderson's motrin dosage, which helps us get from hour 5 to hour 6 w/o that horrible pain A was in earlier. Plus, she said we could mix as many meds in a few ounces of apple juice that we wanted (to help prevent Anderson seeing that "syringe" of med) So, more things to try. And....at 8 PM tonight...THEY SEEM TO BE WORKING!! Whew!!! Lets hope that we all get more sleep tonight. I think Charlie pulled an all nighter, and Anderson and I got about 3 hours of sleep. Kaitlyn got so tired of Anderson's screaming in the middle of the night, she asked if she could go sleep with Mima and Popo...which she did!
Kaitlyn, Ryan and I went to the children's hospital today. They have that huge playroom on the 1st floor that residents of the Ronald McDonald house can use (even siblings). HOW GREAT! We took a shuttle over there, which the kids LOVED!!! Then, we were able to play with a HUGE room of all new toys. Lets say they want to go back tmr. AND, the child life specialists told me I could take Kaitlyn up to the 5th floor so she could see the elephant with pink toes ;) Kaitlyn and Ryan loved all of it! They also liked to see where Anderson was last week.
Kaitlyn is such a sweet sweet little girl (yes, I am her Mom and a little bias, but she is!). Tonight Kaitlyn says, "Mommy, Daddy, I need to tell you something. Whenever I look at Anderson's bandage down the back of his head, it makes me feel bad for him". WOW! We told her thanks for sharing her feelings, and we feel the same way...but, what the doctor did to Anderson that gave him that bandage will make him feel better and it is exciting and we should think about how it will help Anderson. She said, "I know, but I still feel bad". Bless her heart.
Then....tonight, Daddy went out to pick up dinner (some nights at the RMH they have groups to come in and serve food, and then some nights they do not...tonight was an "off" night). When Char got back with dinner, Kaitlyn says "What did you bring me, my PRINCE?" Charlie was ALL smiles after that one!!!
Ryan is doing well too. He is READY to go. We have found him climbing the built in shelves in the playroom (sorry Ronald). He is full of energy and ready to play right now. I think he is happy we are back together! Not sure Ryan quite understands as much as Kaitlyn when it comes to Anderson. Ryan understands to be gentle, but that is about all he seems to "get" right now.
Mima Sue and Popo Jim left today. We were sad to see all of the grandparents come and go.....and BOY, what a weekend they all got to see. Hopefully, the next time Anderson will be full of new tricks and instead of puking when they see him next.
This past weekend felt like 10 steps backward. Anderson was sicker this past weekend than he had been at ANY point post-op in the hospital. But, we are hopeful again, now that we have his pain management under control.....at least right now!
I will try to post some pictures later.
Until...good night!
On the bright side....Kaitlyn, Ryan, Mima Sue and Popo Jim made it in yesterday. It was SO SO great to see them!! Kaitlyn and Ryan are in LOVE with the Ronald McDonald House. The playroom is their favorite...full of all kinds of toys, puzzles and books. Looks like it is straight out of Pottery Barn Kids catalog.
This morning there were a few flurries in the sky. The kids RAN outside (Ryan still in his jammies, but with a jacket on....) to try and catch some snow. They tried to catch some flakes on their tongues, and then they found a pile of snow from the big storm a few weeks ago...and they threw snowballs at Popo and Mima. Everyone was having so much fun!
Now Anderson.....poor guy, he had a very hard night last night. We got the new medication for anti-nausea and A was still throwing up. It seemed to us to be a pain problem. The motrin is wearing off at 5 hours, we can't give it to him until 6 hours. So, in that 5th hour, he starts to puke. Then, on top of it, the poor kid gets too much med in a syringe, that if he sees a syringe now, he starts gagging...regardless if you have put anything in his mouth!!
Anyway, at midnight, we had Mima Sue come to our room. We were headed to the ER with Anderson. The nurse had said if you give Anderson the new med 2 times, and he is still throwing up, to come to the ER. So...off we were headed, he did this....Well, a nice couple we met here, who have Chiari kiddos, saw us on our way out. They suggested we call the neurosurgeon group so they would know we were on our way in. The resident called us back and basically said to come in if we were concerned, but they would not be able to do much more than an IV fluid. The resident suggested we wait until 6 AM when Dr. Frim's whole staff would be there ( I guess this guy is not on Dr. Frim's staff)...and then, they would be able to help us more. Plus, the resident gave us a few more "things" to try to help manage Anderson's pain. So, we thought we would try them until the morning when we could talk to one of Dr. Frim's NPs. Ummm....did not work out (the residents latest suggestions!)
We talked to Amanda, 1 of Dr. Frim's NP (who we love!) this morning. She was able to increase Anderson's motrin dosage, which helps us get from hour 5 to hour 6 w/o that horrible pain A was in earlier. Plus, she said we could mix as many meds in a few ounces of apple juice that we wanted (to help prevent Anderson seeing that "syringe" of med) So, more things to try. And....at 8 PM tonight...THEY SEEM TO BE WORKING!! Whew!!! Lets hope that we all get more sleep tonight. I think Charlie pulled an all nighter, and Anderson and I got about 3 hours of sleep. Kaitlyn got so tired of Anderson's screaming in the middle of the night, she asked if she could go sleep with Mima and Popo...which she did!
Kaitlyn, Ryan and I went to the children's hospital today. They have that huge playroom on the 1st floor that residents of the Ronald McDonald house can use (even siblings). HOW GREAT! We took a shuttle over there, which the kids LOVED!!! Then, we were able to play with a HUGE room of all new toys. Lets say they want to go back tmr. AND, the child life specialists told me I could take Kaitlyn up to the 5th floor so she could see the elephant with pink toes ;) Kaitlyn and Ryan loved all of it! They also liked to see where Anderson was last week.
Kaitlyn is such a sweet sweet little girl (yes, I am her Mom and a little bias, but she is!). Tonight Kaitlyn says, "Mommy, Daddy, I need to tell you something. Whenever I look at Anderson's bandage down the back of his head, it makes me feel bad for him". WOW! We told her thanks for sharing her feelings, and we feel the same way...but, what the doctor did to Anderson that gave him that bandage will make him feel better and it is exciting and we should think about how it will help Anderson. She said, "I know, but I still feel bad". Bless her heart.
Then....tonight, Daddy went out to pick up dinner (some nights at the RMH they have groups to come in and serve food, and then some nights they do not...tonight was an "off" night). When Char got back with dinner, Kaitlyn says "What did you bring me, my PRINCE?" Charlie was ALL smiles after that one!!!
Ryan is doing well too. He is READY to go. We have found him climbing the built in shelves in the playroom (sorry Ronald). He is full of energy and ready to play right now. I think he is happy we are back together! Not sure Ryan quite understands as much as Kaitlyn when it comes to Anderson. Ryan understands to be gentle, but that is about all he seems to "get" right now.
Mima Sue and Popo Jim left today. We were sad to see all of the grandparents come and go.....and BOY, what a weekend they all got to see. Hopefully, the next time Anderson will be full of new tricks and instead of puking when they see him next.
This past weekend felt like 10 steps backward. Anderson was sicker this past weekend than he had been at ANY point post-op in the hospital. But, we are hopeful again, now that we have his pain management under control.....at least right now!
I will try to post some pictures later.
Until...good night!
Sunday, March 9, 2008
Sunday
Sorry it has been so long. We've had a VERY eventful last few days.
The good news....Anderson was discharged on Friday afternoon. We were so happy that he was discharged. We decided at the last minute to stay at the Ronald McDonald House, instead of the Park Hyatt. The manager of th Ronald McDonald House (RMH) called us Friday at the hospital and told us that she would LOVE for us to stay and would LOVE for all of the kids stay with us. So, here we are...and based on the past few days events....thank God!
Well, I think Anderson's CSF flow has found his vomit center. Yep, it started. He has started to vomit yesterday. Mima Lois and Popo Larry drove up from Cincinnati to visit....just in time! Anderson threw up just a few hours b/4 they arrived....lucky them ;) Anderson was sick throughout the day and all day today.
We called the hospital yesterday, we talked to a neurosurgeon resident who was suppose to call us in an anti-nausea medication. We get the RX and gave it to Anderson. It worked "okay" through the rest of the day.
Today, as he continued to vomit....decided to call Dr. Frim's nurse practioner (sp?) who discharged us and told us to call her with any questions. So.....we called her....she said the RX we got yesterday is not typically used in Chiari post op patients b/c it is not strong enough (oh great!) She was able to prescribe us the "right" med. We have it to A around 3:00 and he has been sleeping ever since. Poor honey, he has been so sick and puking. Hopefully, this new RX will work.
Need to run....Charlie is running out the door and picking up Mima Sue, Popo Jim, Kaitlyn and Ryan!!!
YAHOO!! Keep your fingers crossed that Anderson's new med helps...he has not be able to keep ANYTHING down today.
Off to do more laundry too....ha, ha, ha! ;)
The good news....Anderson was discharged on Friday afternoon. We were so happy that he was discharged. We decided at the last minute to stay at the Ronald McDonald House, instead of the Park Hyatt. The manager of th Ronald McDonald House (RMH) called us Friday at the hospital and told us that she would LOVE for us to stay and would LOVE for all of the kids stay with us. So, here we are...and based on the past few days events....thank God!
Well, I think Anderson's CSF flow has found his vomit center. Yep, it started. He has started to vomit yesterday. Mima Lois and Popo Larry drove up from Cincinnati to visit....just in time! Anderson threw up just a few hours b/4 they arrived....lucky them ;) Anderson was sick throughout the day and all day today.
We called the hospital yesterday, we talked to a neurosurgeon resident who was suppose to call us in an anti-nausea medication. We get the RX and gave it to Anderson. It worked "okay" through the rest of the day.
Today, as he continued to vomit....decided to call Dr. Frim's nurse practioner (sp?) who discharged us and told us to call her with any questions. So.....we called her....she said the RX we got yesterday is not typically used in Chiari post op patients b/c it is not strong enough (oh great!) She was able to prescribe us the "right" med. We have it to A around 3:00 and he has been sleeping ever since. Poor honey, he has been so sick and puking. Hopefully, this new RX will work.
Need to run....Charlie is running out the door and picking up Mima Sue, Popo Jim, Kaitlyn and Ryan!!!
YAHOO!! Keep your fingers crossed that Anderson's new med helps...he has not be able to keep ANYTHING down today.
Off to do more laundry too....ha, ha, ha! ;)
Saturday, March 8, 2008
Friday, March 7, 2008
Thursday, March 6, 2008
Day 3
Terrific Thursday!!
We are still at the hospital on Thursday night. Anderson had such a wonderful day. He was finally up and about! It was great great great to see him up off the bed. WE were able to get him up, hold him, give him a sponge bath, play on a mat on the floor with the new cars and airplane (thank you Scherer's!), read books, played with the piggy bank...and he went out to the "main" play area on the 5th floor. We hope to venture to the BIG play area on the 1st floor, we hear it is quite the toy room.
Anderson tolerated being up very well. He was in pain at 1st, but he was able to overcome it and enjoy himself. He does not really turn his head too much....he will turn his body or move his eyes to look around...but on occasion, he will turn his neck. Dr. Frim said this is all very very normal. Anderson is down to very limited pain medication as well. It has been almost 48 hours since his last dose of morphine (to put it into perspective, he was getting morphine every 2-3 hours for 1st 2 days...now none!). We are managing his pain with Children's Motrin!! Can you believe it? He is also on valium (sp?), which relaxes the muscles so his muscles do not go into spasm (in the back of his neck where they made the incision). He is quite the little ROCK STAR.
People keep asking how Charlie and I are doing....we are doing well. We are feeling much better....we both have a sinus infection. Anderson's nurse practioner (sp?) gave Char and I a RX on Tuesday night so we would not have to go the ER. The meds seem to be helping us...but, who cares....did we mention our son just had BRAIN surgery?? This sinus infection seems like a walk in the park.
Anyway, emotionally....Charlie and I feel so so so so great! For the past year, we have been in a "worry" mode. That is all we did...worry, wonder, worry, wonder what is wrong. We've been so anxious, searching for answers, and simply heartbroken. The unknown was so very very difficult. That heartbreak turned around for us the night we spoke to Dr. Frim and he told us how successful he felt the surgery was for Anderson. Then, yesterday, when Anderson did the piggy bank...our hearts were SO full of HOPE. That worry has turned into hope. We feel so very blessed that there was something we could do to help Anderson and we believe in our hearts this was it!
Our negative energy and sadness has turned into positive energy and hope. Christmas Eve I spent most of the day in tears, I can remember. Just not understanding what was wrong with our baby and what all of these pieces meant, having no answers was so frustrating!!!
Now, I can't wait to wake up tmr morning to see what things Anderson will be doing. Charlie and I have spent the past 6 months (well, really longer than that...but ALL of the past 6 months) looking at the all of the things that Anderson "could not do"....now, we are looking at all of the things he "can do"! What a different way to look at life....our hearts are no longer broken, they are full of hope and wonder of what he will do next to surprise us.
Overall, we notice things are just "different" with Anderson. The way he is communicating, his cognitive abilities, he is waving "hi" to all of the nurses when they come into our room (he was not waving b/4 we came here!), he reads books and points to pictures with more certainty, and his pincher grasp is much more precise. He seems more coordinated and has more precision right now. I am not sure if anyone else besides us would notice these small things, but they are there....trust me, we have analyzed this kid TOO much the past 9 months to not notice these "small" things that he is accomplishing....and we just know that these are only the beginning!
LASTLY, I have to share with you what happened to me today...this is one of the reasons why I am not posting until so late at night (the other reason is b/c we were playing so hard today!).....another angel was sent to me today. Here is the background....
I get People magazine every week (mindless and fun to read when you are a Mom and only get 2 minutes here and there to read). Anyway, back in November...there was an article written in People about a little girl who makes bracelets and sells them to raise money for her disease she has. The article caught my eye and I read it (as some of you know, I make bracelets, I thought how cute!). Well, then, you know November 28th, Anderson was diagnosed with Chiari. Fast forward to January, we find Dr. Frim as the "go to doctor". I google the heck out of Dr. Frim. I find an article called "Living in the Dark". While reading this article, it says how Dr. Frim needs $10 million to do the research he wants to do on Chiari. And, at the end of this article is a note about Baylie, a little girl making bracelets to raise $$ for Dr. Frim for Chiari. OMGOODNESS that is the girl I remember reading about in People....it was CHIARI she was raising $$ for...I read about her 3 weeks b/4 A's diagnosis. WEIRD.
Okay...fast forward to today....Char, Anderson and I are playing in the play area on the 5th floor. This kind angel (Mom) comes to us and says...did your son have decompression surgery? Yes, he did. She said, my daughter was 13 months for her 1st surgery. Wow...A's 19 months. So, we are comparing notes. As she begins to talk, I realize I have " heard this story"...I am running thru my head of all of the emails I have received...then it occurred to me..."Are you Baylie's Mom? Baylie the bracelet maker?" The angel (Mom) says "Yes, that is my daughter!" I could not believe it......I wanted to meet her daughter and hug her and tell her how proud I was of her. I want to start doing Chiari fund raising (in my spare time), but I am 33....not 9!!!!!
As Tressie (Baylie's Mom) told us about Baylie, we could not get over the similar symptoms that Baylie and Anderson share. Baylie was actually so phyiscally delayed at 1 year, she could not even sit up! Verbally, Baylie did not speak like Anderson. Today, she is a "typical" 3rd grader with some physical limitations (no contact sports, no diving, nothing that can cause head trama...Anderson will have this the rest of his life as well). But...Baylie could not talk, walk, play, etc when she was Anderson's age...and to look at her today.....warmed our hearts.
Again, after talking to Tressie, meeting Baylie...Charlie and I were even more "renewed" with hope. I had tears of hope today. Here was a little girl with very similar limitations as Anderson and to see her 8 years later....WOW! No other way to say it.....HOPE!
Baylie has been on MSNBC, news stations, People magazine, spokes person for Comer's Children's Hospital, and went to Washington DC to speak to senators about funds and research for rare diseases, etc. Did I mention she is 9??? Baylie has raised $140,000 so far. YES! $140,000 so far! Her goal is $1 million! Go Baylie!!
Here is Dr. Frim's article " Living in the Dark"..... www.uchicagokidshospital.org/physicians/david-frim.html
** This is Dr. Frim's bio, on the right hand side there will be a place you can view the article.
Here is Baylie's web page.....
www.baylieforbrains.com
** you can go to her web site and purchase a bracelet, make a donation, or buy a tshirt to help raise awareness and funds for Chiari research.
Lastly, here is an article on Baylie on the Univ Chicago web page...describing how she started fundraising for Dr. Frim....at age 4!!!
www.uchospitals.edu/news/2005/20050715-chiari.html
Needless to say, Tressie and I spent a long, long time talking today, sharing stories, getting tips from an experienced "Chiari" mom with a child with VERY similar symptoms to Anderson, and exchanging info. We have found an amazing support person. She was an angel sent to us! Tressie wants me to help them do fund raising for Chiari!!!
To think...I have read about Baylie, Chiari affects Anderson in similar ways as Baylie, and we meet her.....WOW....an angel coming to us and giving us hope.
Thank you Tressie and Baylie!
Until tmr....GOOD NIGHT!
We are still at the hospital on Thursday night. Anderson had such a wonderful day. He was finally up and about! It was great great great to see him up off the bed. WE were able to get him up, hold him, give him a sponge bath, play on a mat on the floor with the new cars and airplane (thank you Scherer's!), read books, played with the piggy bank...and he went out to the "main" play area on the 5th floor. We hope to venture to the BIG play area on the 1st floor, we hear it is quite the toy room.
Anderson tolerated being up very well. He was in pain at 1st, but he was able to overcome it and enjoy himself. He does not really turn his head too much....he will turn his body or move his eyes to look around...but on occasion, he will turn his neck. Dr. Frim said this is all very very normal. Anderson is down to very limited pain medication as well. It has been almost 48 hours since his last dose of morphine (to put it into perspective, he was getting morphine every 2-3 hours for 1st 2 days...now none!). We are managing his pain with Children's Motrin!! Can you believe it? He is also on valium (sp?), which relaxes the muscles so his muscles do not go into spasm (in the back of his neck where they made the incision). He is quite the little ROCK STAR.
People keep asking how Charlie and I are doing....we are doing well. We are feeling much better....we both have a sinus infection. Anderson's nurse practioner (sp?) gave Char and I a RX on Tuesday night so we would not have to go the ER. The meds seem to be helping us...but, who cares....did we mention our son just had BRAIN surgery?? This sinus infection seems like a walk in the park.
Anyway, emotionally....Charlie and I feel so so so so great! For the past year, we have been in a "worry" mode. That is all we did...worry, wonder, worry, wonder what is wrong. We've been so anxious, searching for answers, and simply heartbroken. The unknown was so very very difficult. That heartbreak turned around for us the night we spoke to Dr. Frim and he told us how successful he felt the surgery was for Anderson. Then, yesterday, when Anderson did the piggy bank...our hearts were SO full of HOPE. That worry has turned into hope. We feel so very blessed that there was something we could do to help Anderson and we believe in our hearts this was it!
Our negative energy and sadness has turned into positive energy and hope. Christmas Eve I spent most of the day in tears, I can remember. Just not understanding what was wrong with our baby and what all of these pieces meant, having no answers was so frustrating!!!
Now, I can't wait to wake up tmr morning to see what things Anderson will be doing. Charlie and I have spent the past 6 months (well, really longer than that...but ALL of the past 6 months) looking at the all of the things that Anderson "could not do"....now, we are looking at all of the things he "can do"! What a different way to look at life....our hearts are no longer broken, they are full of hope and wonder of what he will do next to surprise us.
Overall, we notice things are just "different" with Anderson. The way he is communicating, his cognitive abilities, he is waving "hi" to all of the nurses when they come into our room (he was not waving b/4 we came here!), he reads books and points to pictures with more certainty, and his pincher grasp is much more precise. He seems more coordinated and has more precision right now. I am not sure if anyone else besides us would notice these small things, but they are there....trust me, we have analyzed this kid TOO much the past 9 months to not notice these "small" things that he is accomplishing....and we just know that these are only the beginning!
LASTLY, I have to share with you what happened to me today...this is one of the reasons why I am not posting until so late at night (the other reason is b/c we were playing so hard today!).....another angel was sent to me today. Here is the background....
I get People magazine every week (mindless and fun to read when you are a Mom and only get 2 minutes here and there to read). Anyway, back in November...there was an article written in People about a little girl who makes bracelets and sells them to raise money for her disease she has. The article caught my eye and I read it (as some of you know, I make bracelets, I thought how cute!). Well, then, you know November 28th, Anderson was diagnosed with Chiari. Fast forward to January, we find Dr. Frim as the "go to doctor". I google the heck out of Dr. Frim. I find an article called "Living in the Dark". While reading this article, it says how Dr. Frim needs $10 million to do the research he wants to do on Chiari. And, at the end of this article is a note about Baylie, a little girl making bracelets to raise $$ for Dr. Frim for Chiari. OMGOODNESS that is the girl I remember reading about in People....it was CHIARI she was raising $$ for...I read about her 3 weeks b/4 A's diagnosis. WEIRD.
Okay...fast forward to today....Char, Anderson and I are playing in the play area on the 5th floor. This kind angel (Mom) comes to us and says...did your son have decompression surgery? Yes, he did. She said, my daughter was 13 months for her 1st surgery. Wow...A's 19 months. So, we are comparing notes. As she begins to talk, I realize I have " heard this story"...I am running thru my head of all of the emails I have received...then it occurred to me..."Are you Baylie's Mom? Baylie the bracelet maker?" The angel (Mom) says "Yes, that is my daughter!" I could not believe it......I wanted to meet her daughter and hug her and tell her how proud I was of her. I want to start doing Chiari fund raising (in my spare time), but I am 33....not 9!!!!!
As Tressie (Baylie's Mom) told us about Baylie, we could not get over the similar symptoms that Baylie and Anderson share. Baylie was actually so phyiscally delayed at 1 year, she could not even sit up! Verbally, Baylie did not speak like Anderson. Today, she is a "typical" 3rd grader with some physical limitations (no contact sports, no diving, nothing that can cause head trama...Anderson will have this the rest of his life as well). But...Baylie could not talk, walk, play, etc when she was Anderson's age...and to look at her today.....warmed our hearts.
Again, after talking to Tressie, meeting Baylie...Charlie and I were even more "renewed" with hope. I had tears of hope today. Here was a little girl with very similar limitations as Anderson and to see her 8 years later....WOW! No other way to say it.....HOPE!
Baylie has been on MSNBC, news stations, People magazine, spokes person for Comer's Children's Hospital, and went to Washington DC to speak to senators about funds and research for rare diseases, etc. Did I mention she is 9??? Baylie has raised $140,000 so far. YES! $140,000 so far! Her goal is $1 million! Go Baylie!!
Here is Dr. Frim's article " Living in the Dark"..... www.uchicagokidshospital.org/physicians/david-frim.html
** This is Dr. Frim's bio, on the right hand side there will be a place you can view the article.
Here is Baylie's web page.....
www.baylieforbrains.com
** you can go to her web site and purchase a bracelet, make a donation, or buy a tshirt to help raise awareness and funds for Chiari research.
Lastly, here is an article on Baylie on the Univ Chicago web page...describing how she started fundraising for Dr. Frim....at age 4!!!
www.uchospitals.edu/news/2005/20050715-chiari.html
Needless to say, Tressie and I spent a long, long time talking today, sharing stories, getting tips from an experienced "Chiari" mom with a child with VERY similar symptoms to Anderson, and exchanging info. We have found an amazing support person. She was an angel sent to us! Tressie wants me to help them do fund raising for Chiari!!!
To think...I have read about Baylie, Chiari affects Anderson in similar ways as Baylie, and we meet her.....WOW....an angel coming to us and giving us hope.
Thank you Tressie and Baylie!
Until tmr....GOOD NIGHT!
Wednesday, March 5, 2008
1st New trick....hopefully of many!
Anderson's 1st new trick has happened!!! We have this same toy pig at home. I am not kidding when I tell you, Anderson could not put the coin in the pig b/4 we left. Now, this toy is not just sitting in a closet and we did not have it out in the last 3 months. It is out everyday, something we work on with him. It is a developmental task one of his OT's started back in September!!!
** There are a lot of posts today, so be sure to scroll down and read them all...that is if you are interested! ;)
** Even as I was waiting for this video to download, Anderson rolled over on his belly!! Go Anderson, go Anderson, go Anderson!
XOXO
** There are a lot of posts today, so be sure to scroll down and read them all...that is if you are interested! ;)
** Even as I was waiting for this video to download, Anderson rolled over on his belly!! Go Anderson, go Anderson, go Anderson!
XOXO
More pics
Here are the pics from my camera.
They all melt my heart. He is really so happy. Hard to believe the little angel came out of brain surgery 48 hours ago! Sorry I am posting so many. You know how I am a photo crazy person (among many other things!)
Enjoy!
Mama and A taking a nap in the PICU Day 1
Sleeping day 2
We are on the main floor, the on the elephant floor (go figure Anderson would be on the elephant floor of the hospital since that is his BIG sister's favorite!!!....check out the elephant's toes! Kaitlyn would be so proud!)
Sleepy man!
They all melt my heart. He is really so happy. Hard to believe the little angel came out of brain surgery 48 hours ago! Sorry I am posting so many. You know how I am a photo crazy person (among many other things!)
Enjoy!
Mama and A taking a nap in the PICU Day 1
Sleeping day 2
We are on the main floor, the on the elephant floor (go figure Anderson would be on the elephant floor of the hospital since that is his BIG sister's favorite!!!....check out the elephant's toes! Kaitlyn would be so proud!)
Sleepy man!
At Home....and Day 2 in Recovery
It's Wednesday.
Thought I would update what is happening back at home in California. Mima Sue is taking care of Ryan and Kaitlyn. She said that the other night at bedtime, Ryan was asking for Mommy and Daddy. Kaitlyn said, "Ryan do not worry buddy. Mommy and Daddy are with Anderson at a special doctor. It is really exciting b/c Popo Jim will be here in a few days and then we will go on a plane with Mima and Popo to Chicago to see Mommy and Daddy". Ryan said, "oh, okay" and went to sleep. ;) So cute!
Yesterday, Ryan had his 2 week post-op follow up with Dr. Camilon. Dr. Cami (as we call him), said that Ryan's ears look great. Typically...Ryan's ears and great do not go in the same sentence....so, we were VERY happy to hear this. Dr. Camilon says everything looks good. Dr. Camilon asked Ryan if he told Mima what he was going to be when he grows up yet? Ryan said, "Mima, I am going to be a "booger doctor" like Dr. Cami." Dr. Cami told Mima that they were planning on going into practice together to make little boys and girls feel better!! You GO Ryan! (PS...Dr. Cami calls himself a booger doctor to Ryan ;) Cute!
Also, yesterday, Kaitlyn got a "2 year" trophy at gymnastics. She called us SO excited and full of pride. You could sense the smile on her face over the phone. She has been taking gymnastics for 2 years and they presented her with a trophy. We did not know that was going to happen yesterday, so bummed we missed it. But, our friend, Lyna took pics for us to see when we get back! Kaitlyn took her trophy to share day today at school.
Now Anderson....things continue to go well. The main floor is so much quieter than the PICU. At this hospital, there is a section of the main floor (where we are) that the nurses are specially trained to take care of Dr. Frim's patients and specifically trained on post-op Chiari patients. Isn't that great? LOVE THIS PLACE! Dr. Frim's NP was telling us last night these nurses think that all of these people are walking around with Chiari and that it is "normal" b/c they see so many children with it. Dr. Frim and his NP's explain that, NO it is rare, most hospitals see around 1o-12 per YEAR. But, at UCChildren's they see 2-3/week sometimes! On average, it is around 1/week...but they can have 2-3/week. WOW! Anyway, it is nice to know that these nurses know what to expect, know how to care for Anderson, and help us understand the expectations post-surgery, etc. Did we mention we LOVE this place? We feel SO lucky to be here and in the best of hands.
Last night was a good night. Anderson slept from 8:30pm-6:30am. He woke up 1 time around 2Am and needed some morphine, but then back to sleep. I slept with him in his "big boy" bed for the 1st part of the night, and then Char and I shared the bed they have in the room the rest of the night.
Anderson is having a difficult time moving as I mentioned in last night's post. This morning he is trying to "roll over". We are trying to stop him from doing this. They want him to try sitting up 1st. When we move him, try to pick him up, etc...he cries. It is hard to see him in so much pain, it breaks our hearts. So, we are taking it slowly, and the doctors told us the same.... Increase the bed elevation a little bit at a time. We need to slowly acclimate Anderson to his "new" CSF flow. The docs told us today if we do it too fast he will get a spinal headache...and from what they understand (from their older patients...obviously, Anderson is to little and is physically unable to tell us), they are VERY VERY VERY painful. So, baby steps...baby steps right now. The surgeons continue to be impressed with Anderson, which makes us happy!
LOVE all of the posts and emails. Thank you...keep them coming, we love reading them.
Sorry these posts are long and detailed, but they are also our way of keeping track to what is happening. I am sure in 1 week we will forget, so this is also our log of events. When Anderson is asleep, I have time to do this. It is too difficult for me to read and concentrate...so I enjoy doing this.
Thanks for checking in and taking the time to read about little Anderson (and Kaitlyn and Ryan too!)
Kristen posted a few new pics below. These are ones I take with my phone and then she downloads for me...thank you! I will try to post some other pics from my camera later today.
Lastly....had to share this with you. This hospital is wonderful for so many many reasons. Dr. Frim is here, the nurses are great, the care is wonderful and the medicine practiced is state of the art. On a less important level, the hospital is 3 years old...so visually it is VERY nice. Everything has been so well thought out. The "gas" lines in the room are hidden behind kid's artwork, ech floor has a theme when you 1st enter it, the color of the lights in the elevator change colors as you approach different floors, kids artwork along the hallways..you get it. Well, in our room we have our own private bathroom. There are several pieces of tile in the bathroom that are pics that precious patients of the hospital drew. Then, there is this 1 tile in our shower where they have a copy of a Shel Silverstein poem. I think it is NO COINCIDENCE we are in this room (and, yes, I checked the room next door...they have different Shel Silverstein poem in their shower....this is our room's poem!!)
Thought I would update what is happening back at home in California. Mima Sue is taking care of Ryan and Kaitlyn. She said that the other night at bedtime, Ryan was asking for Mommy and Daddy. Kaitlyn said, "Ryan do not worry buddy. Mommy and Daddy are with Anderson at a special doctor. It is really exciting b/c Popo Jim will be here in a few days and then we will go on a plane with Mima and Popo to Chicago to see Mommy and Daddy". Ryan said, "oh, okay" and went to sleep. ;) So cute!
Yesterday, Ryan had his 2 week post-op follow up with Dr. Camilon. Dr. Cami (as we call him), said that Ryan's ears look great. Typically...Ryan's ears and great do not go in the same sentence....so, we were VERY happy to hear this. Dr. Camilon says everything looks good. Dr. Camilon asked Ryan if he told Mima what he was going to be when he grows up yet? Ryan said, "Mima, I am going to be a "booger doctor" like Dr. Cami." Dr. Cami told Mima that they were planning on going into practice together to make little boys and girls feel better!! You GO Ryan! (PS...Dr. Cami calls himself a booger doctor to Ryan ;) Cute!
Also, yesterday, Kaitlyn got a "2 year" trophy at gymnastics. She called us SO excited and full of pride. You could sense the smile on her face over the phone. She has been taking gymnastics for 2 years and they presented her with a trophy. We did not know that was going to happen yesterday, so bummed we missed it. But, our friend, Lyna took pics for us to see when we get back! Kaitlyn took her trophy to share day today at school.
Now Anderson....things continue to go well. The main floor is so much quieter than the PICU. At this hospital, there is a section of the main floor (where we are) that the nurses are specially trained to take care of Dr. Frim's patients and specifically trained on post-op Chiari patients. Isn't that great? LOVE THIS PLACE! Dr. Frim's NP was telling us last night these nurses think that all of these people are walking around with Chiari and that it is "normal" b/c they see so many children with it. Dr. Frim and his NP's explain that, NO it is rare, most hospitals see around 1o-12 per YEAR. But, at UCChildren's they see 2-3/week sometimes! On average, it is around 1/week...but they can have 2-3/week. WOW! Anyway, it is nice to know that these nurses know what to expect, know how to care for Anderson, and help us understand the expectations post-surgery, etc. Did we mention we LOVE this place? We feel SO lucky to be here and in the best of hands.
Last night was a good night. Anderson slept from 8:30pm-6:30am. He woke up 1 time around 2Am and needed some morphine, but then back to sleep. I slept with him in his "big boy" bed for the 1st part of the night, and then Char and I shared the bed they have in the room the rest of the night.
Anderson is having a difficult time moving as I mentioned in last night's post. This morning he is trying to "roll over". We are trying to stop him from doing this. They want him to try sitting up 1st. When we move him, try to pick him up, etc...he cries. It is hard to see him in so much pain, it breaks our hearts. So, we are taking it slowly, and the doctors told us the same.... Increase the bed elevation a little bit at a time. We need to slowly acclimate Anderson to his "new" CSF flow. The docs told us today if we do it too fast he will get a spinal headache...and from what they understand (from their older patients...obviously, Anderson is to little and is physically unable to tell us), they are VERY VERY VERY painful. So, baby steps...baby steps right now. The surgeons continue to be impressed with Anderson, which makes us happy!
LOVE all of the posts and emails. Thank you...keep them coming, we love reading them.
Sorry these posts are long and detailed, but they are also our way of keeping track to what is happening. I am sure in 1 week we will forget, so this is also our log of events. When Anderson is asleep, I have time to do this. It is too difficult for me to read and concentrate...so I enjoy doing this.
Thanks for checking in and taking the time to read about little Anderson (and Kaitlyn and Ryan too!)
Kristen posted a few new pics below. These are ones I take with my phone and then she downloads for me...thank you! I will try to post some other pics from my camera later today.
Lastly....had to share this with you. This hospital is wonderful for so many many reasons. Dr. Frim is here, the nurses are great, the care is wonderful and the medicine practiced is state of the art. On a less important level, the hospital is 3 years old...so visually it is VERY nice. Everything has been so well thought out. The "gas" lines in the room are hidden behind kid's artwork, ech floor has a theme when you 1st enter it, the color of the lights in the elevator change colors as you approach different floors, kids artwork along the hallways..you get it. Well, in our room we have our own private bathroom. There are several pieces of tile in the bathroom that are pics that precious patients of the hospital drew. Then, there is this 1 tile in our shower where they have a copy of a Shel Silverstein poem. I think it is NO COINCIDENCE we are in this room (and, yes, I checked the room next door...they have different Shel Silverstein poem in their shower....this is our room's poem!!)
The Voice
There is a voice inside of you
That whispers all day long,
"I feel that this is right for me,
I know that this is wrong."
No teacher, preacher, parent, friend
Or wise man can decide
What's right for you~~just listen to
The voice that speaks inside.
By Shel Sivlerstein
There is a voice inside of you
That whispers all day long,
"I feel that this is right for me,
I know that this is wrong."
No teacher, preacher, parent, friend
Or wise man can decide
What's right for you~~just listen to
The voice that speaks inside.
By Shel Sivlerstein
Crazy, huh? That voice was speaking to Charlie and I for MONTHS AND MONTHS. It is so true...listen to your voice! Coincidence? I do not think so ;)
XOXOXO
XOXOXO
Liz and Charlie
Anderson - You're the Man!
Here are a few more pictures.
Anderson moving to Main floor (more freedom!)
Day 2 in Recovery
Reading with Mama
Tuesday, March 4, 2008
Main Floor
It's Tuesday night. We are on the main floor now. The nurses and doctors are not in quite as frequent, overall it is just quieter.
Anderson continues to do well. He is eating well, and not throwing up. The NP felt that we were in the clear at this point. We shall see.....
The only thing that Anderson is having a hard time doing is moving. Understandably! He does not like us to pick him up or move him. Dr. Frim says this is good, this means his CSF is flowing and he does not know what the feeling is, it feels "different" to him. He needs to adjust to this new feeling. In addition, obviously, it is painful for Anderson b/c they just did major surgery on his brain and cut thru the back of his neck to get there.
Anderson was much more alert today, we read books, watched a few cartoons (he NEVER sits still to typically watch Dora!), sang songs, took naps, ate! It was a good day. It's hard to believe he had major surgery 24 hours ago!
I am not sure we will be as spoiled tonight though as we were last night. Aunt Sara and Uncle John and his family bribed the night shift nurses last night in the PICU with pizzas. They told the nurses to take extra care of their nephew ;) Thank you....we did get some extra special treatment last night! ;) What a fun idea!
Good night from us and Our Little Tiger!
Anderson continues to do well. He is eating well, and not throwing up. The NP felt that we were in the clear at this point. We shall see.....
The only thing that Anderson is having a hard time doing is moving. Understandably! He does not like us to pick him up or move him. Dr. Frim says this is good, this means his CSF is flowing and he does not know what the feeling is, it feels "different" to him. He needs to adjust to this new feeling. In addition, obviously, it is painful for Anderson b/c they just did major surgery on his brain and cut thru the back of his neck to get there.
Anderson was much more alert today, we read books, watched a few cartoons (he NEVER sits still to typically watch Dora!), sang songs, took naps, ate! It was a good day. It's hard to believe he had major surgery 24 hours ago!
I am not sure we will be as spoiled tonight though as we were last night. Aunt Sara and Uncle John and his family bribed the night shift nurses last night in the PICU with pizzas. They told the nurses to take extra care of their nephew ;) Thank you....we did get some extra special treatment last night! ;) What a fun idea!
Good night from us and Our Little Tiger!
1st Night
Well, our 1st night is over and it went great. Everyone's comments that see Anderson (the PICU doctors, neurosurgeon doctors, PICU nurses) are the same....HE LOOKS AMAZING. The doctor this morning said, "You make this surgery look easy!" Good for Anderson. We are still on pins and needles waiting to see what happens. We have been warned by our "angels" and the doctors to expect lots of vomit. The place in the brain where they performed the surgery is the "vomit center" of our brain. So, this surgery can trigger vomiting. So far, so good.
Anderson ate breakfast this morning, so they did go ahead, as a preventative measure, and prescribe anti-nausea medication. If he tolerates his lunch, we will be able to move up to the "regular floor" and out of the PICU. This is exciting for several reasons. 1) We were told to expect to be in the PICU for 2-3 days. This means A is progressing well enough to move up early. 2) In the PICU, the point is to have around the clock care...we have someone in our room (a doctor or nurse) approx every 1-2 hours. It was very difficult for Anderson to get much rest yesterday. Obviously, it is important they were monitoring him so closely, but now they feel he is okay, it will be nice to have someone only every 4 hours instead.
All of Anderson's restrictions have been lifted. He was on STRICT bed rest, we were not allowed to hold him. That was just lifted, and he is sleeping right now, so when he wakes up, we can't wait to pick him up!!! They took out his cath., art-line (IV for blood pressure), and 1 of his 2 IV's came out. SO, now...he only has 1 IV. He feels a little more "free" ;)
The hospital was able to bring in an "adult" size bed this morning. They transferred Anderson into the bed, so I was able to rest next to him and he nursed. Lets say he was a HAPPY camper and fell right to sleep!
Things here are going well. Hope to have more news as Anderson continues to "wake" up more today. He was only awake yesterday about 30 minutes.
I attached some pictures. They are pictures from the night b/4 surgery, Anderson in his surgical outfit with the nurse right b/4 surgery ( I can't figure out how to turn it, sorry)....and then...the best one...a 19 mo old with his own IPHONE. Well, he thought it was....at 4 AM, the only thing that kept him quiet was playing my IPOD from my IPHONE. It made him very happy....whatever it takes!
Happy Tuesday! Keep you posted if and when we move up to the regular floor.
XOXO
Monday, March 3, 2008
SURGEON UPDATE
HI everyone!!
Sorry it took us so long to post. We were waiting to see Dr. Frim tonight to make a post.
Lets start with Anderson. He did an amazing job today. We are so proud of him. The resident surgeon told us after surgery he did great and was so brave. We were able to see him at 12:30 CST. They took us directly to the pediatric intensive care unit (PICU). Understandably, Anderson is on quite a few meds right now. He is on strict bed rest for 24 hours. Sadly, we have not been able to hold him, it is killing us....we are dying to get our hands on him. In the meantime, we hold his hand, sing to him, smile at him, read books with him, kiss him and anything you can do leaning over a bed with a 19 mo old baby! The surgeons, doctors and nurses think he is doing great. He is drinking quite a bit, which is good news! We are in a private room in the PICU, so we are both spending the night tonight with Anderson!!! We are glad we can all be together.
We saw Dr. Frim tonight. He was able to give us some great news. The decompression surgery was quite successful. The 1st goal of the surgery is to open up space and allow more room for cerebral spinal fluid (CSF) flow and brain. When they went into Anderson's C1 (location on his spine) to access the area they needed to work....they were able to visually see pressure being released (can you imagine...just what this could do for him??) Then, they went further into the brain (the dura to be specific) and opened up more room. Again, could see pressure being released.
Once they were in there....Dr. Frim could see that Anderson's cerebral tonsils were asymmetrical. (These tonsils are what was seen herniating down on the MRI) Anderson's left tonsil was significantly herniated more than his right. Dr. Frim was able to perform a procedure on Anderson's left tonsil to make it symmetrical to his right tonsil...this is allowing more room as well!!!!
Dr. Frim told us that Anderson's decompression surgery was "Special". He said, in patients with asymmetrical cerebral tonsils (like Anderson's), the patients tend to respond even more favorably to the decompression surgery!!! THANK YOU GOD! Again, answered prayers!
So, Dr. Frim was even more hopeful this could be the answer to things we have been looking for. We are even more encouraged. We obviously will not know for a long time what this will mean to Anderson developmentally...however, I can only imagine that it has to help the overall way Anderson feels since they were able to visually see pressure being released during the surgery. No more headaches??? ;) We shall see. We believe, We are Hopeful!!
Anderson continues to rest comfortably. We just sit and watch him.
Thanks again and again. As you can see...all of the prayers and support are working!! We are so blessed to have all of you supporting us.
XOXOXOXO
Liz and Charlie
Sorry it took us so long to post. We were waiting to see Dr. Frim tonight to make a post.
Lets start with Anderson. He did an amazing job today. We are so proud of him. The resident surgeon told us after surgery he did great and was so brave. We were able to see him at 12:30 CST. They took us directly to the pediatric intensive care unit (PICU). Understandably, Anderson is on quite a few meds right now. He is on strict bed rest for 24 hours. Sadly, we have not been able to hold him, it is killing us....we are dying to get our hands on him. In the meantime, we hold his hand, sing to him, smile at him, read books with him, kiss him and anything you can do leaning over a bed with a 19 mo old baby! The surgeons, doctors and nurses think he is doing great. He is drinking quite a bit, which is good news! We are in a private room in the PICU, so we are both spending the night tonight with Anderson!!! We are glad we can all be together.
We saw Dr. Frim tonight. He was able to give us some great news. The decompression surgery was quite successful. The 1st goal of the surgery is to open up space and allow more room for cerebral spinal fluid (CSF) flow and brain. When they went into Anderson's C1 (location on his spine) to access the area they needed to work....they were able to visually see pressure being released (can you imagine...just what this could do for him??) Then, they went further into the brain (the dura to be specific) and opened up more room. Again, could see pressure being released.
Once they were in there....Dr. Frim could see that Anderson's cerebral tonsils were asymmetrical. (These tonsils are what was seen herniating down on the MRI) Anderson's left tonsil was significantly herniated more than his right. Dr. Frim was able to perform a procedure on Anderson's left tonsil to make it symmetrical to his right tonsil...this is allowing more room as well!!!!
Dr. Frim told us that Anderson's decompression surgery was "Special". He said, in patients with asymmetrical cerebral tonsils (like Anderson's), the patients tend to respond even more favorably to the decompression surgery!!! THANK YOU GOD! Again, answered prayers!
So, Dr. Frim was even more hopeful this could be the answer to things we have been looking for. We are even more encouraged. We obviously will not know for a long time what this will mean to Anderson developmentally...however, I can only imagine that it has to help the overall way Anderson feels since they were able to visually see pressure being released during the surgery. No more headaches??? ;) We shall see. We believe, We are Hopeful!!
Anderson continues to rest comfortably. We just sit and watch him.
Thanks again and again. As you can see...all of the prayers and support are working!! We are so blessed to have all of you supporting us.
XOXOXOXO
Liz and Charlie
He's Hanging in There!
Here are a couple pictures of Anderson in the PICU today. One of him with his new tiger (thanks to Angie and family!) and one of him reading a book with Mom and Dad.
He looks amazing!!!
Liz still plans to get online after talking with the surgeon tonight and give a surgery update.
(posted at 8:01 CST)
Sleeping Peacefully
Liz sent a text saying that Anderson is doing great and resting peacefully in the PICU.
"He looks great considering. The surgeons said he was so brave and did great!"
She plans to update a bit later today when she has access.
(posted at 3:17 CST)
Anderson is out of surgery!
Anderson is now in the PICU recovering from surgery!! Liz and Charlie will send an update as soon as they are able to.
(posted at 1:05 CST)
UPDATE TO today is the day
Hi again.
Now we had some breakfast, I can type more and think clearer ;)
Anderson has been in now for 2 out of approx 4 hours.
The most DIFFICULT thing about this was "turning Anderson over" to the doctors for surgery. We got to walk him to a "red line" (literally, a red line marked on the floor outside of the operating rooms) and kiss him goodbye. To say this was difficult, is an understatement. We were a complete wreck...and continued to be a wreck for about 20-30 minutes. Once we talked to Dr. Frim, we felt so much better.
** Remember when Ryan had his 2nd set of ear tubes put in almost 2 weeks ago (yes, for those who did not know.....about 2 weeks ago, Ryan had surgery! Yes, we have been crazy busy! He had his 2nd set of ear tubes put in and adenoids taken out)...anyway, I kept saying, taking Ryan to that surgery felt like a trip to Chuck E. Cheese....well, after today...yes, taking Ryan for his ear tubes DID feel like a trip to Chuck E. Cheese ;) compared to this. Not to down play little Ryan's surgery, just different!!! Ryan was VERY brave for his surgery, he did a great job and is feeling better....yes, I digress....
Now, a few hours into surgery, we are anxious to see Anderson again and hold him.
The Ronald McDonald house is SO nice here. We decided to stay there b/c it is only 2 blocks away. Thought it would be convenient to be close to the hospital. Plus, we can leave our things there and stay at the hospital....go back and shower, get things, etc very easy. The Ronald McDonald house (RMH) here was just built in 12/07. It is brand new, approx 30,000 sq ft, 22 rooms, kid's play room, living rooms, fully stocked kitchen (anything you could want to eat)....so so so nice. The resident manager was helpful, nice, and welcoming. He told us that 30% of their residents are Dr. Frim's patients for Chiari...DOES THAT TELL YOU ANYTHING? Made Char and I smile at ech other when we heard this...yes, we are in the right place! He told us that Dr. Frim is internationally known for his Chiari work and they have many, many of his patients stay at the house.
Last night around 8:30 CST I was starting to lose it...the reality was sinking in. Crying, crying, crying...a little after 9:00 CST I started to feel better, feeling more calm. About 1/2 hour later.....I realized something.....did any of you Moms in Orange County get goose bumps?? Yes, at 7:00 PST (9:00CST)....my Moms group from Church held a Rosary dedication for Anderson! Wonder why I felt that calm feeling a little after 9:00 ;) !! Thank you MOMS for hosting that dedication.
Another thing....God is so good....many of you know...we had a cRAZY week of sick kids last week. We were sweating bullets on this one. Anderson got sick last Sunday (Feb 24th.....7 days to get better) with a cold and cough. They would not operate on him if he was sick, they were going to cancel the surgery. So, our ped put Anderson on an antibotic and breathing treatments. Then, Kaitlyn and Ryan got sick. Then, I got sick (now it is Wednesday with 4 out of 5 of us sick). Anyway...Anderson started to get better. Okay, feeling better. Now it is Friday...Anderson got pink eye. I mean, are you kidding me?? Pink eye? Back to the doctor....on Friday, Kaitlyn needs steriod breathing treatments, more breathing treatments for Anderson and now eye drops. Yes, Saturday, I had the pink eye. Saturday night, Kaitlyn and Ryan had it. Oh brother! Needless to say....on Sunday morning when we woke up...Anderson was better, no pink eye, no runny nose or cough...and I was better (oh yeah, did I mention, if I was sick they would not let me in the intensive care unit with Anderson??) and we were off for the plane ride to Chicago......GOD is good. ** Yes, we like to keep things REALLY exciting around here!! ha, ha,ha!
Thank you to EVERYONE for all of the prayers, support, emails, posts, prayer chains that you have started for Anderson. As you can tell from reading above....it's working! If you could have seen how sick our house was last week (or the look on the faces of the surgeons when I told them Anderson had pink eye 3 days ago...they were happy it was 3 days ago and not yesterday!!!) you would know....your prayers are working so far. We feel so lucky that we did not have to cancel the surgery!! Keep the prayers coming!!!! ** Did I say, THANKS for those prayers from all of you yet??? ;) No other way for us to express it.....THANK YOU, THANK YOU, THANK YOU!
I know so many of put Anderson on prayer lists, prayer chains, told your friends, told everyone...THANK YOU! You are helping us get thru this right now.
When we get the notes you send, it makes us smile (and me a little teary) to know we have the love of our friends and family. We are so thankful and blessed to have all of you during this time.
** I will continue to update as much as possible during the day. Right now, not much for us to do....just wait. So, I thought I would type a little more. You can scroll down to read previous posts from earlier today. Our friend, Kristen posted a cute pic of Anderson from this AM!
XOXOXO
Now we had some breakfast, I can type more and think clearer ;)
Anderson has been in now for 2 out of approx 4 hours.
The most DIFFICULT thing about this was "turning Anderson over" to the doctors for surgery. We got to walk him to a "red line" (literally, a red line marked on the floor outside of the operating rooms) and kiss him goodbye. To say this was difficult, is an understatement. We were a complete wreck...and continued to be a wreck for about 20-30 minutes. Once we talked to Dr. Frim, we felt so much better.
** Remember when Ryan had his 2nd set of ear tubes put in almost 2 weeks ago (yes, for those who did not know.....about 2 weeks ago, Ryan had surgery! Yes, we have been crazy busy! He had his 2nd set of ear tubes put in and adenoids taken out)...anyway, I kept saying, taking Ryan to that surgery felt like a trip to Chuck E. Cheese....well, after today...yes, taking Ryan for his ear tubes DID feel like a trip to Chuck E. Cheese ;) compared to this. Not to down play little Ryan's surgery, just different!!! Ryan was VERY brave for his surgery, he did a great job and is feeling better....yes, I digress....
Now, a few hours into surgery, we are anxious to see Anderson again and hold him.
The Ronald McDonald house is SO nice here. We decided to stay there b/c it is only 2 blocks away. Thought it would be convenient to be close to the hospital. Plus, we can leave our things there and stay at the hospital....go back and shower, get things, etc very easy. The Ronald McDonald house (RMH) here was just built in 12/07. It is brand new, approx 30,000 sq ft, 22 rooms, kid's play room, living rooms, fully stocked kitchen (anything you could want to eat)....so so so nice. The resident manager was helpful, nice, and welcoming. He told us that 30% of their residents are Dr. Frim's patients for Chiari...DOES THAT TELL YOU ANYTHING? Made Char and I smile at ech other when we heard this...yes, we are in the right place! He told us that Dr. Frim is internationally known for his Chiari work and they have many, many of his patients stay at the house.
Last night around 8:30 CST I was starting to lose it...the reality was sinking in. Crying, crying, crying...a little after 9:00 CST I started to feel better, feeling more calm. About 1/2 hour later.....I realized something.....did any of you Moms in Orange County get goose bumps?? Yes, at 7:00 PST (9:00CST)....my Moms group from Church held a Rosary dedication for Anderson! Wonder why I felt that calm feeling a little after 9:00 ;) !! Thank you MOMS for hosting that dedication.
Another thing....God is so good....many of you know...we had a cRAZY week of sick kids last week. We were sweating bullets on this one. Anderson got sick last Sunday (Feb 24th.....7 days to get better) with a cold and cough. They would not operate on him if he was sick, they were going to cancel the surgery. So, our ped put Anderson on an antibotic and breathing treatments. Then, Kaitlyn and Ryan got sick. Then, I got sick (now it is Wednesday with 4 out of 5 of us sick). Anyway...Anderson started to get better. Okay, feeling better. Now it is Friday...Anderson got pink eye. I mean, are you kidding me?? Pink eye? Back to the doctor....on Friday, Kaitlyn needs steriod breathing treatments, more breathing treatments for Anderson and now eye drops. Yes, Saturday, I had the pink eye. Saturday night, Kaitlyn and Ryan had it. Oh brother! Needless to say....on Sunday morning when we woke up...Anderson was better, no pink eye, no runny nose or cough...and I was better (oh yeah, did I mention, if I was sick they would not let me in the intensive care unit with Anderson??) and we were off for the plane ride to Chicago......GOD is good. ** Yes, we like to keep things REALLY exciting around here!! ha, ha,ha!
Thank you to EVERYONE for all of the prayers, support, emails, posts, prayer chains that you have started for Anderson. As you can tell from reading above....it's working! If you could have seen how sick our house was last week (or the look on the faces of the surgeons when I told them Anderson had pink eye 3 days ago...they were happy it was 3 days ago and not yesterday!!!) you would know....your prayers are working so far. We feel so lucky that we did not have to cancel the surgery!! Keep the prayers coming!!!! ** Did I say, THANKS for those prayers from all of you yet??? ;) No other way for us to express it.....THANK YOU, THANK YOU, THANK YOU!
I know so many of put Anderson on prayer lists, prayer chains, told your friends, told everyone...THANK YOU! You are helping us get thru this right now.
When we get the notes you send, it makes us smile (and me a little teary) to know we have the love of our friends and family. We are so thankful and blessed to have all of you during this time.
** I will continue to update as much as possible during the day. Right now, not much for us to do....just wait. So, I thought I would type a little more. You can scroll down to read previous posts from earlier today. Our friend, Kristen posted a cute pic of Anderson from this AM!
XOXOXO
TODAY IS THE DAY!!
Well, we made it. Sorry I did not post last night when we arrived in Chicago. I could not figure out the WI-FI at the Ronald McDonald house where we are staying.
Everything in California was great when we left. Kaitlyn was a little nervous on Saturday night b/4 bed about us leaving. She said....Mommy, I need a picture of you so I can remember you when you are away. I told her we have a picture, not to worry. Then, she said I do not want you to go. I told her....Kaitlyn, we are taking Anderson to a special doctor, he is going to help Anderson feel better, this is REALLY exciting for our family. She simply smiled and said, okay Mommy....you should go! SO SWEET!
The trip here was uneventful, which was perfect. We got to the Ronald McDonald house, 2 blocks from the hospital and ordered pizza. We packed our hospital bags and tried to get some sleep ;) Anderson slept with us, and woke at 3 AM...wanting to nurse (yes, he still nurses!) B/c of the surgery, he could not have anything to eat or drink, so after 2 hours of trying to rock him to sleep, Charlie walking him around the room to sleep, etc...we went for a drive around Chicago. We drove around and around and around. We did find a Starbucks at 5:55AM!
Our dear friend, Kristen, posted the cute pic of Anderson (see below)...I took it while he was sleeping in the car this morning.
Well, it is 8:35 AM CST and we JUST got done speaking to the surgeon, Dr. Frim. Dr. Frim was on his way into surgery. So, they just started surgery. They took Anderson at 7:50 AM to start prepping for surgery. We felt so much better after we saw Dr. Frim! They said it would be approx 4 hours.
We will post again, or Kristen will to keep you updated....
Keep the prayers coming!!! We appreciate ALL of you!
LOVE,
Liz and Charlie
Everything in California was great when we left. Kaitlyn was a little nervous on Saturday night b/4 bed about us leaving. She said....Mommy, I need a picture of you so I can remember you when you are away. I told her we have a picture, not to worry. Then, she said I do not want you to go. I told her....Kaitlyn, we are taking Anderson to a special doctor, he is going to help Anderson feel better, this is REALLY exciting for our family. She simply smiled and said, okay Mommy....you should go! SO SWEET!
The trip here was uneventful, which was perfect. We got to the Ronald McDonald house, 2 blocks from the hospital and ordered pizza. We packed our hospital bags and tried to get some sleep ;) Anderson slept with us, and woke at 3 AM...wanting to nurse (yes, he still nurses!) B/c of the surgery, he could not have anything to eat or drink, so after 2 hours of trying to rock him to sleep, Charlie walking him around the room to sleep, etc...we went for a drive around Chicago. We drove around and around and around. We did find a Starbucks at 5:55AM!
Our dear friend, Kristen, posted the cute pic of Anderson (see below)...I took it while he was sleeping in the car this morning.
Well, it is 8:35 AM CST and we JUST got done speaking to the surgeon, Dr. Frim. Dr. Frim was on his way into surgery. So, they just started surgery. They took Anderson at 7:50 AM to start prepping for surgery. We felt so much better after we saw Dr. Frim! They said it would be approx 4 hours.
We will post again, or Kristen will to keep you updated....
Keep the prayers coming!!! We appreciate ALL of you!
LOVE,
Liz and Charlie
A Little Nap Before the Big Day
This is Anderson taking a snooze as Mom and Dad drive around Chicago.....very, very early in the morning. (he woke up and was not able to eat or drink)
Is he not the cutest??? :)
As I am posting this, they are already at the hospital....had to be there and checked in by 6:30 am CST.
There will be postings throughout the day as well.
(posted at 6:47 am CST by Kristen Scherer kscherer@nationalrsi.com)
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