Well, we just completed a 2 day stint in Boston. Andrew went through an outpatient 24 hr EEG. We won't have any results until next week. Not that I am about to get my hopes up, or get excited but....Andrew has had no drop seizures or clonic jerks for at least 5 days now! I have this feeling in me that says it's just the calm before the storm. Of course Andrew's Neurologist in Boston says OH, NO don't think like that! This is very "typical" of him. I can only hope that we are not in for a grand mal type seizure next. Other than that he is doing well and enjoying his 2 weeks off from school. He starts back on August 31. I have HUGE reservations about whether this fall class will be any better than the summer one. He now has a new teacher and the school it supposed to be getting themsleves specialized training so they can learn how to teach Andrew.
We are very anxious for Andrew to get his seizure dog!!
Wednesday, September 22, 2010
The leaves are falling....but Andrew is not
In the last couple of weeks Andrew's seizures have dropped off a little. He had an appointment with his neurologist from DHMC today. He had the results of the 24 hr ambulatory EEG. He said there was some basic improvement but the most important part is that he is NOT having any hypsarrythmic pattern on the EEG. That pattern is resposible for children not being able to learn. This is great news but his Neuro wants another EEG in the next week or two.
Today at school Andrew was in his pacer(walker) which he is quickly outgrowing. Typically they last at least 5 yrs. He has very little room for growth left. When he first got it he had a lot of room left!! What a healthy little boy. While in the pacer he is able to walk down the halls in the school. He walked all the way down the hall and stopped in Jessica's callroom from last year. Mrs Sobecki welcomed him right in!! He walked right in and looked around. OOPS what a distraction for those kids! He did not get to go in Jessica's classroom because her class door was closed....probably not a good thing for him to know, anyway. When he walked back down the hall he passed many doors; most of them open. When he came to the PT room he stopped outside the door and turned. He looked for a minute or so, then went right in!! This is so awesome for him! Once in the PT room he was walking in the pacer and ran into the stairs. He backed up then manuvered the pacer around the stairs.....problem solving?!?! He then saw another doorway and centered himself and went through the doors and around corners to the SLP's room. So very cool the accomplishments he has made!
Today at school Andrew was in his pacer(walker) which he is quickly outgrowing. Typically they last at least 5 yrs. He has very little room for growth left. When he first got it he had a lot of room left!! What a healthy little boy. While in the pacer he is able to walk down the halls in the school. He walked all the way down the hall and stopped in Jessica's callroom from last year. Mrs Sobecki welcomed him right in!! He walked right in and looked around. OOPS what a distraction for those kids! He did not get to go in Jessica's classroom because her class door was closed....probably not a good thing for him to know, anyway. When he walked back down the hall he passed many doors; most of them open. When he came to the PT room he stopped outside the door and turned. He looked for a minute or so, then went right in!! This is so awesome for him! Once in the PT room he was walking in the pacer and ran into the stairs. He backed up then manuvered the pacer around the stairs.....problem solving?!?! He then saw another doorway and centered himself and went through the doors and around corners to the SLP's room. So very cool the accomplishments he has made!
Friday, September 10, 2010
Wow, what a night!!
Most would think oh, she must have gone on a date with her husband after a comment like that. No, sorry to disappoint you all. As a mother of a child with special needs I continue to savor each little accomplishment Andrew makes. You know, the ones that everyone with a "typical" child takes for granted. Well, when Andrew gains a new accomplishment it is cause for our whole household to have a moment of celebration!
A friend of mine gave us a toddler car bed for Andrew. As I drove home with it in the truck I thought, hmmm I wonder if he will be safe in it? Andrew's room has an "L" shaped alcove that the bed fit nicely into. Jessica and I arranged all his stuffed animals around the 3 sides. Yup, Jess and I were pretty proud of what we came up with. She was just as excited to notice there would still be room for her to sleep with him on the weekends. I did wonder how he would get off the bed in the morning.
When bedtime came I tucked him into his new car bed. He woke up twice in the night, but did not move from where he was put. When I heard him this morning I looked and he had (somehow) gotten out of bed and was walking aroundt his room. I had placed the dog bed he was sleeping on in front of the car so he must have crawled down the little slope onto the dog bed and that was that.
We will wait to see what tonight brings.......but maybe we have something good started here. There is even room for his dog!
A friend of mine gave us a toddler car bed for Andrew. As I drove home with it in the truck I thought, hmmm I wonder if he will be safe in it? Andrew's room has an "L" shaped alcove that the bed fit nicely into. Jessica and I arranged all his stuffed animals around the 3 sides. Yup, Jess and I were pretty proud of what we came up with. She was just as excited to notice there would still be room for her to sleep with him on the weekends. I did wonder how he would get off the bed in the morning.
When bedtime came I tucked him into his new car bed. He woke up twice in the night, but did not move from where he was put. When I heard him this morning I looked and he had (somehow) gotten out of bed and was walking aroundt his room. I had placed the dog bed he was sleeping on in front of the car so he must have crawled down the little slope onto the dog bed and that was that.
We will wait to see what tonight brings.......but maybe we have something good started here. There is even room for his dog!
Tuesday, August 31, 2010
On the wings of an Angel
The last few weeks have been very busy in our house. Andrew has had visits to Children's Hospital in Boston, and other appointments closer to home. Jessica and Andrrew both started school on Monday. It was hard for me to drop Andrew off at preschool. I know that things will get better with his school program I just may need to bring in other people to help at his IEP meetings. He has preschool on Tues and Thurs with a service day every Wednesday I want Andrew to be in the least restrictive school envirnoment as possible. Being pulled out all the time isn't the answer. So we will try having him at school on Wednesday to receive thereapies such as PT/ST/TVI/TOD etc.
Andrew's seizure's have declined some. I have not seen a drop attack or clonic jerk in at least 10 days. But, as his Mom (and a nurse) I know that this could be the calm before the storm. I have seen to many improvements, only to only them followed by a much worse type of seizure. I am crossing my fingers that he will not have grand mals next. A small ray of hope lingers in the hope that the diet is working.
He continues to grow and is headed straight for 3T/4T size clothes!! Wow, he is growing so well now with his feeding tube in place.
We wait anxiously for his service dog and we know what a comfort he will get from his new pal.
But, with alll that is good something not so good comes along....My Dad (Andrew's Grandpa) is in the ICU with an infection of unknown origin. He has already been through so much and was recovering very well from a heart surg in April. Please keep "Grandpa" in your thoughts and prayers as we all hope for a speedy recovery. I believe in angels and I believe everyone has one looking over them. I LOVE YOU MOM & DAD
Andrew's seizure's have declined some. I have not seen a drop attack or clonic jerk in at least 10 days. But, as his Mom (and a nurse) I know that this could be the calm before the storm. I have seen to many improvements, only to only them followed by a much worse type of seizure. I am crossing my fingers that he will not have grand mals next. A small ray of hope lingers in the hope that the diet is working.
He continues to grow and is headed straight for 3T/4T size clothes!! Wow, he is growing so well now with his feeding tube in place.
We wait anxiously for his service dog and we know what a comfort he will get from his new pal.
Saturday, July 17, 2010
Nurse 24/7
There is nothing I would not do for my son.........we have frequent visits to many different doctors and I try very hard to maintain balance within our family while working full time. Sometimes it is so frustrating to start a new treatment for Andrew's seizures and not really see a change or even see a decline in his seizure control. Jess, Andrew and I were enjoying a summer day at the lake withthe adaptive sports program when I got a call from Boston Children's. Andrew's lab work showed that he was acidodic again with a CO2 level of 18. Normal is at least 22. So I was given new orders to increase his Cytra-K to 1.5 packets a day and increase his fat to carb ratio to 3.5:1. The last time we did that his CO2 levels really dropped. They feel he can handle the ration now so here we go. I had to throw out the formula I had already made up for the other ratio and throw out the pre made meal dishes. UGH!! Those were a real pain to put together! I have to weigh everything on a gram scale before it goes in the small meal dish. I have an appt scheduled for October 6 with his neurologist at DHMC. I was told to make this appt in case he continues to not respond well to the diet. We go to Boston in August for an out patient 24 hour EEG. They hope to catch more of his seizure activity and see if the diet is helping at all. I sometimes feel that I leave my job as a nurse during the day to come home and I am a nurse again. I am SLOWLY convincing myself that it is ok to train other people on how to complete Andrew's tube feedings. This is very hard for me...you an laugh but I have become a very protective mother over anything to do with Andrew. I know that this is not healthy, sio I will be training the young lady who watches the kids every other Saturday how to do Andrew's feedings. I had made myself almost sick trying to figure out how myself or Allen (or our daycare provider) can be present for his feed every 4 hours during the day. I have full confidence in D.J. I just have a hard time not being the one to do it all and all the what if's.
Andrew is now in pre school and that is a whole different mess! Things are never easy and this is even more true with a child who has special needs. I now have to keep on the school to be sure that all the items listed in his IEP are being done and that my child isn't segregated or left in a corner alone. I recently had someone at work say to me in regards to my son what makes your son so special you think that the school should make that change just because "your" son is there? At first this brought on alot of anger...now just sadness knowing that that is the life my son has ahead of him. Someone will ALWAYS think they know what he needs or criticize what he gets or services or adaptations and they will never get to truely meet Andrew. They will never get to see what a great kid he really is. They will only be focused on how much he costs the tow, school and how he takes away from the other kids. All I can think is how dare you, how dare you crticize me or my family unless you live here and go through what we go through everyday. I never know what kind of day Andrew will have. The day this person made this comment to me was Andrew's first day of school and they had already called to say he had 14 seizures in 1/2 hour. then that person felt the need to make that comment within minutes of me getting off the phone.
I am a better person and I can only bring out the best in each day and look past those things that come along that may try to bring me down. I will surround myself with positive people. Make no mistake I am a mother defending my son and he will never go without because someone thinks they know better. I will go to the mat for him each and every time!
Thank you to everyone who has made Andrew's Hope a huge success!
Andrew is now in pre school and that is a whole different mess! Things are never easy and this is even more true with a child who has special needs. I now have to keep on the school to be sure that all the items listed in his IEP are being done and that my child isn't segregated or left in a corner alone. I recently had someone at work say to me in regards to my son what makes your son so special you think that the school should make that change just because "your" son is there? At first this brought on alot of anger...now just sadness knowing that that is the life my son has ahead of him. Someone will ALWAYS think they know what he needs or criticize what he gets or services or adaptations and they will never get to truely meet Andrew. They will never get to see what a great kid he really is. They will only be focused on how much he costs the tow, school and how he takes away from the other kids. All I can think is how dare you, how dare you crticize me or my family unless you live here and go through what we go through everyday. I never know what kind of day Andrew will have. The day this person made this comment to me was Andrew's first day of school and they had already called to say he had 14 seizures in 1/2 hour. then that person felt the need to make that comment within minutes of me getting off the phone.
I am a better person and I can only bring out the best in each day and look past those things that come along that may try to bring me down. I will surround myself with positive people. Make no mistake I am a mother defending my son and he will never go without because someone thinks they know better. I will go to the mat for him each and every time!
Thank you to everyone who has made Andrew's Hope a huge success!
Wednesday, June 23, 2010
The frustrations of the Keto diet
Well, my oh so wonderful son was awake most of the night. Seizures, tube feedings, blood work etc. Poor little man. He never knew what hit him! this morning he was being checked by the attending when he suddenly wretched and threw up large amounts nof water and stomach bile. Apparently his Co2 level was low before he even started the diet. So the attending ARNP order Citri k and Andrew took it throughhis g-tube. With in 3 min it ALL came back up! So then the fun and games started. An IV was ordered and we waited patiently for the IV nurse to come. When she did it took three tries to get a successful IV started. (Not to mention the bloody mess when we finally got it) Now Andrew has had IV fluids and another feeding of 1/2 strength formula via g-tube. Wow that boy can pee! His urine dip ketones are above 3 which means we are getting to the ketosis state. Currnetly he is sleeping and I have been to a training to review weighing, measuring and food plans. I will have another class tomorrow. Poor little man has blood drawn 1-2 times a day and finger sticks every 6 hrs. The pull out couch/bed is not very comfortbale, but it lets Andrew lay with me when he is really upset. Let's all keep our fingers crossed for success.
Tuesday, June 22, 2010
Boston here we come
Today Andrew and I head to Boston. He will be starting on the Ketogenic diet. We are in hope that this will work. We have tried many many other drugs...so maybe this will be the one thing that works. He has been having more seizures lately and has not had a full nights sleep in weeks. So I guess it is safe to say that the Zonegran doesn not work for him. This is not unususal for him though. He does this with most meds. He will do wqell on it for weeks maybe months. Then he will develop a tolerance to the med and it is not effective anymore. We will be at Children's Hosp until at least Friday. Yuck what a long week! They say Andrew will be very sleepy the first few days. Maybe I can catch up on some emails and blogging while he is asleep. I know that if he had his dog already that it would make his stay more comfortable for him. Wish us luck!
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