Today Christian had another session of physical therapy. He did a great job working hard. On our second dive of the day he slept thru it and then slept 2 more hours back at the room. Oh it was heaven! I got to just relax and catch a little sleep myself. Some people (me) weren't made to get up this early. I'm ready for the weekend.
Thursday, May 21, 2009
Day 3
Christian had 2 hours of physical therapy today. I thought we'd just start with an hour and see how he handled it but he just kept on going and before we knew it--2 hours had flown by. It's amazing how much more he can do when he's not having big seizures.
I think it's so neat to meet the different people that are here getting hyperbaric treatments. The diagnosis range from autism, cerebral palsy, stroke, Parkinson's, brain injuries (car accidents). . . No one really minds to share their story and the interesting thing is that we (moms of kids with disabilities) have an automatic bond and willingness to share information and help each other. The first day we are talking about doctors, support groups, resources, . . .like we've known each other for years. I also noticed there's no one trying to play the "one up ya game" that some moms play. Ya know "well my kid can. . . " And I think the chamber is sort of like a therapy session-we talk about things that are working or not for our kids, their strengths, and just laugh about things. We really laugh a lot in there. You'd think they were pumping in laughing gas. Two guys even play card games to pass the time while some others take the hour and 30 minutes to just close their eyes and relax. This time is a little more work because Christian does not just sit there. We stand a little, sit a little, bounce, whatever keeps him happy. So far he's only slept for 10 minutes in there.
I put some videos on of him practicing in his walker at the hotel, standing, and sitting at therapy.
We can't wait to see daddy tomorrow!
I think it's so neat to meet the different people that are here getting hyperbaric treatments. The diagnosis range from autism, cerebral palsy, stroke, Parkinson's, brain injuries (car accidents). . . No one really minds to share their story and the interesting thing is that we (moms of kids with disabilities) have an automatic bond and willingness to share information and help each other. The first day we are talking about doctors, support groups, resources, . . .like we've known each other for years. I also noticed there's no one trying to play the "one up ya game" that some moms play. Ya know "well my kid can. . . " And I think the chamber is sort of like a therapy session-we talk about things that are working or not for our kids, their strengths, and just laugh about things. We really laugh a lot in there. You'd think they were pumping in laughing gas. Two guys even play card games to pass the time while some others take the hour and 30 minutes to just close their eyes and relax. This time is a little more work because Christian does not just sit there. We stand a little, sit a little, bounce, whatever keeps him happy. So far he's only slept for 10 minutes in there.
I put some videos on of him practicing in his walker at the hotel, standing, and sitting at therapy.
We can't wait to see daddy tomorrow!
Tuesday, May 19, 2009
Day 2
Well we are on day 2 of treatments up here in KC. We did one dive yesterday at a lower pressure than normal and one today just to ease back in. Tomorrow we will start 2 a days. I'm excited to be in the chamber with other people. I may just talk there ears off. I never knew I liked having company so much.;) Christian will have physical therapy thursday and possibly friday.
He hasn't had any big seizures since friday. We are so thankful! He is just so different, it is amazing. I will put a couple of videos of him working, on here tonight. He's doing great in his walker.
Hyperbaric Lingo
- when i say dive I mean going in to the chamber for treatment. We do this twice a day.
-the chamber does not move or go under water or anything like that.
He hasn't had any big seizures since friday. We are so thankful! He is just so different, it is amazing. I will put a couple of videos of him working, on here tonight. He's doing great in his walker.
Hyperbaric Lingo
- when i say dive I mean going in to the chamber for treatment. We do this twice a day.
-the chamber does not move or go under water or anything like that.
Sunday, May 17, 2009
Great News
This may just be one of my most exciting posts, yet!! In the past 6 days Christian has only had 2 big seizures! He went 3 and half days without any big ones , then had 2 on friday and hasn't had any big ones since then. When I say "big ones" I mean the kind where he falls asleep afterwards because they are so tuff on him. Let me remind you that he has had seizures since he was 7 months old everyday. He's had the big ones everyday, multiple times (3-4)a day for about 9 months. As a parent they are difficult to watch and heartbreaking. We have tried multiple medicines and as many of you know took him to Kansas City for hyperbaric treatment. These seizures basically keep him from making much progress in therapy because he would have one during or before and be lethargic or fall asleep.
We have prayed everyday for this (that his seizures would stop) and filled out i don't even know how many cards at church. We give God the glory for anwsering prayers. He is faithful and is always on time. Thank you all so much for your prayers, just know that if you said even 1 prayer for Christian's seizures they were heard.
Eric and I are just overjoyed at the "new" Christian. The changes were obvious the first day he didn't have any. He is much more verbal, energetic, laughs at different things, chewing his food better (eating a whole muffin), wanting to stand and walk in his walker, takes a normal time nap. It is amazing! Eric found this scripture during the middle of all of this and I thought it was appropriate. --Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed. 1 Peter 4:12-13
We are back in kansas city to do more hyperbaric treatment. Christian still has his "bouncy" seizures as we call them. They are minor compared to the others but we are still praying that these go away too. Thank you to all of you!!!!!
We have prayed everyday for this (that his seizures would stop) and filled out i don't even know how many cards at church. We give God the glory for anwsering prayers. He is faithful and is always on time. Thank you all so much for your prayers, just know that if you said even 1 prayer for Christian's seizures they were heard.
Eric and I are just overjoyed at the "new" Christian. The changes were obvious the first day he didn't have any. He is much more verbal, energetic, laughs at different things, chewing his food better (eating a whole muffin), wanting to stand and walk in his walker, takes a normal time nap. It is amazing! Eric found this scripture during the middle of all of this and I thought it was appropriate. --Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed. 1 Peter 4:12-13
We are back in kansas city to do more hyperbaric treatment. Christian still has his "bouncy" seizures as we call them. They are minor compared to the others but we are still praying that these go away too. Thank you to all of you!!!!!
Silver Dollar City here we come!
This was Christian's first trip to SDC. He was able to ride 2 rides! He liked them a lot. He had a big grin on the frogs when they would go up and down. I held on to him tightly! We had a great family time and were very pleased with SDC employees helping us out!
Tuesday, May 5, 2009
Hotel Life
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.
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.
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.
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