i love hotels! if you are ever in Columbia stay at the Hampton Inn and Suites across from the University Hospital. It's new, nice, and well somewhere other than the four walls I look at everyday. We are seeing a metabolic geneticist for the first time tomorrow. He may have answers or may not.
Leaving for KC
We are going back to kc for hyperbaric treatments on May 17th. We won't be doing the intense physical therapy but seeing the therapist when she is available for pt sessions. We hope that this will continue to help reduce his seizures. Please continue to pray for Christian's seizures. They have been ruff lately. That's putting it nicely.
Tuesday, May 5, 2009
Wednesday, April 22, 2009
So what if I cried in the bathroom stall. . . .
I mean do other parents not do that after a rough EEG procedure at the hospital???
Oh my I bet that title got your attention. I wouldn't be truthful about my day to day adventures if I didn't include this blog-so i'm stepping out and being vulnerable. I took Christian for an EEG Monday morning at 8am. Well he fell asleep and when I got him out of the stoller and in to me lap all heck broke loose. They were marking his head and scrubbing the spots where the electrodes would be placed and that was not ok with Christian. For the next 25mins. he screamed-not cried-screamed! I thought this is a nightmare that can not be soothed away. I knew he would just have to run his course. I really don't think he was actually fully awake when he was screaming and straightening his body. So yes I just cried-mostly because there was nothing I could do to help soothe him. Talk about embarrassing situation. Me, the 2 ladies, and a screaming 2 year old. I tried to just look the other way while I cried-like that would make them not see me crying:). Finally it was over!!
I made my way to the closest bathroom so that i could cry in private. So there I was wishing the toilet had a lid so I could put it down to sit down because I was holding Christian (he's heavy and still whiny) because the handicap stall was not big enough for the stroller to fit in. I thought about putting the paper cover on the toilet seat but i didn't think i could get it to stay there with just 1 hand. They are so flimsy.
Luckily no one walked in during this.
So I went on up the the neurologist office and I think he could tell it had been rough because he was very nice.
Christian was sound asleep in his stroller and i was not about to risk waking him up so I treated myself to a Mt.Dew and lemon poppy seed muffin. I parked us in the outpatient lobby and enjoyed my dew and muffin and thought it's only 11:00.
After he woke up, I drove on the Walgreens to pick up his medicine and the pharmacist says "your insurance won't cover this". . .. I say to myself "of course"! (this was later worked out).
And so there ya have it. My EEG nightmare. Don't feel sorry for me though, we all have these days but God is so good and you know what it makes me feel very grateful for the days that aren't like this.
Oh my I bet that title got your attention. I wouldn't be truthful about my day to day adventures if I didn't include this blog-so i'm stepping out and being vulnerable. I took Christian for an EEG Monday morning at 8am. Well he fell asleep and when I got him out of the stoller and in to me lap all heck broke loose. They were marking his head and scrubbing the spots where the electrodes would be placed and that was not ok with Christian. For the next 25mins. he screamed-not cried-screamed! I thought this is a nightmare that can not be soothed away. I knew he would just have to run his course. I really don't think he was actually fully awake when he was screaming and straightening his body. So yes I just cried-mostly because there was nothing I could do to help soothe him. Talk about embarrassing situation. Me, the 2 ladies, and a screaming 2 year old. I tried to just look the other way while I cried-like that would make them not see me crying:). Finally it was over!!
I made my way to the closest bathroom so that i could cry in private. So there I was wishing the toilet had a lid so I could put it down to sit down because I was holding Christian (he's heavy and still whiny) because the handicap stall was not big enough for the stroller to fit in. I thought about putting the paper cover on the toilet seat but i didn't think i could get it to stay there with just 1 hand. They are so flimsy.
Luckily no one walked in during this.
So I went on up the the neurologist office and I think he could tell it had been rough because he was very nice.
Christian was sound asleep in his stroller and i was not about to risk waking him up so I treated myself to a Mt.Dew and lemon poppy seed muffin. I parked us in the outpatient lobby and enjoyed my dew and muffin and thought it's only 11:00.
After he woke up, I drove on the Walgreens to pick up his medicine and the pharmacist says "your insurance won't cover this". . .. I say to myself "of course"! (this was later worked out).
And so there ya have it. My EEG nightmare. Don't feel sorry for me though, we all have these days but God is so good and you know what it makes me feel very grateful for the days that aren't like this.
Wednesday, April 8, 2009
Go Lefty! Go Lefty!
I'm so very proud of left! that's Christian's left arm. In the past 3 weeks i'm just astounded at how much range of motion he has in it and how much he's moving it on his own. I just sit and stare in amazement. I wonder if this could be some after effect of the hyperbaric therapy? Thank you Lord! I have some video that I will put on with this later to show you all. I just wanted to brag on the advancements in Lefty!
Blue placard
So i must blog about my blue placard (i think that's how you spell placard). I have never used that word until now. i'm referring to my blue handicap placard that I now have if i need it to hang on my mirror for parking when Christian is with me. I have so many thoughts about this thing.
First of all. . never thought i'd have one so that was really weird to go get it at the license bureau and I never really thought I needed one but uhh i do have a child with special needs and so on. So i fall in to that category. There's actually 3 categories (i think) that were on the sheet the Dr. fills out. We were marked for the first one.
Second of all. . once i got the blue placard and used it I was (A) afraid that the act of parking and then putting it up on the mirror that it seemed like i was cheating and just whipping it out to park close but if you read on the placard it actually says not to drive with it hanging on your mirror--so i felt better about that. Apparently it obstructs your view while driving. (B) I was nervous that after using it and getting Christian's stroller out (which comes in 2 pieces) that a person would be watching and think "she just has a child. why does she think she can park in handicap". i'm always ready for someone to do that. I"m almost scared to use it because it's not obvious enough that we need it. How silly!
Third of all. . . I have now noticed that there are not just handicap parking spaces but some of them say van accessible or van only. So is it illegal for me to park in those if i don't drive a van or just the ones that say van only? o so complicated.
Fourth of all. . . i have rules for using my placard. (A) only when Christian is with me (obviously) (B) only if it is raining or super cold and i'm in a hurry (like late for therapy or doctor appointment) (C) if there is a just as close space that is not handicap i will use it.
Those are my feelings and concerns and rules for my handicap placard.
First of all. . never thought i'd have one so that was really weird to go get it at the license bureau and I never really thought I needed one but uhh i do have a child with special needs and so on. So i fall in to that category. There's actually 3 categories (i think) that were on the sheet the Dr. fills out. We were marked for the first one.
Second of all. . once i got the blue placard and used it I was (A) afraid that the act of parking and then putting it up on the mirror that it seemed like i was cheating and just whipping it out to park close but if you read on the placard it actually says not to drive with it hanging on your mirror--so i felt better about that. Apparently it obstructs your view while driving. (B) I was nervous that after using it and getting Christian's stroller out (which comes in 2 pieces) that a person would be watching and think "she just has a child. why does she think she can park in handicap". i'm always ready for someone to do that. I"m almost scared to use it because it's not obvious enough that we need it. How silly!
Third of all. . . I have now noticed that there are not just handicap parking spaces but some of them say van accessible or van only. So is it illegal for me to park in those if i don't drive a van or just the ones that say van only? o so complicated.
Fourth of all. . . i have rules for using my placard. (A) only when Christian is with me (obviously) (B) only if it is raining or super cold and i'm in a hurry (like late for therapy or doctor appointment) (C) if there is a just as close space that is not handicap i will use it.
Those are my feelings and concerns and rules for my handicap placard.
Friday, March 20, 2009
velcro makes me laugh
Expect the unexpected! That's usually what our days are like regarding several issues. Not all bad either. On this regular night we did expect that our son would break out in uncontrollable giggles due to the velcro noise on his walker. The story goes like this-our usuall 8:00pm walker time wasn't going so hot (he was fussin and doing uhhh no walking) so i was going to get him out. When i tore back the big velcro strap he started laughing so hard and then for the next 5 minutes we just made that noise to hear him laugh. He loved it as you can see on the video. Our camcorder was on early and got more footage. What your seeing is the end of the laughing.
Enjoy!
Enjoy!
slacker blogger
ok well it's been awhile and i've gotten some comments about my slacker blogging.
Christian had his 2 yr birthday party-it was great but it snowed thus trapping my bro and his family and my dad. I'm including some pics of that.
Ps-on the cake the emblem has a 2 in the middle, not a backwards S! The 2 is just curvy.
Christian is doing well-his seizures in the past 2 weeks have been 1-2 a day. They are predictable as far as happening 20-50 minutes after he wakes up from his night sleep and nap. He continues to do well with his sitting and standing. PaPa made him a bench and table to practice-sit to stands! Thank you!
We are waiting on his new walker to come in. He also swapped his old stander for a new, different one and seems to be more comfortable in it and will stand for almost 45 mins. at a time in it.
Thank you for your continued prayers!
Wednesday, March 4, 2009
Back Home
well back to my normal life and routine. I think what I liked about my stay at KC is that I went to the same place everyday nothing different, no mail to sort thru, calls to field, doctors appointments. . . just therapy everyday!
Christian is doing well. His seizures range from 1or2 big ones a day to 4-5 a day. We had a 2,2,1 weekend which was great. He's like a different child when he only has 1 or 2. He's happy and energetic all day. We drink those days in and are so grateful. The other days we pray for strength to not get discouraged.
He's still doing great with his sitting skills and we are practicing all of the rest. His therapist were glad to see him again. We also had a belated birthday party. I'll post pics later.
Christian is doing well. His seizures range from 1or2 big ones a day to 4-5 a day. We had a 2,2,1 weekend which was great. He's like a different child when he only has 1 or 2. He's happy and energetic all day. We drink those days in and are so grateful. The other days we pray for strength to not get discouraged.
He's still doing great with his sitting skills and we are practicing all of the rest. His therapist were glad to see him again. We also had a belated birthday party. I'll post pics later.
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