James has been having muscle spasms in his back several times a day for the past several weeks, causing such severe pain that he is in tears. He has a high pain tolerance, so for him to be in tears, the pain must be pretty dang intense. Most of the time I don't realize how badly things are affecting me until I am practically having a nervous breakdown. And then I think, well it's no wonder.. any mother would be breaking down after watching her child go through pain like this. It is very frustrating.
I suspect tethered cord. The pediatrician suspects the same. She is calling the neurosurgeon's office to see if they would be willing to do another MRI. She is looking into physical therapy treatments for James, to alleviate the pain through massage, hot tub therapy, and some sort of ultrasound therapy.. The neurosurgeon referred us to a physiatrist. What the heck is a physiatrist? That's what I was thinking, so I looked it up. It is a doctor specializing in "the diagnosis and management of injuries and diseases causing pain, loss of function, and disability. Treatment plans often include the use of exercise, massage, heat, electricity (TENS), relaxation techniques, splints and braces, and local injections to relieve pain." Anther definition said that "Physical medicine and rehabilitation (PM&R), or physiatry ( or ), is a branch of medicine which aims to enhance and restore functional ability and quality of life to those with physical impairments or disabilities." Basically, it's a rehabilitation doctor.. who is like a physical therapist, but the next step up.. and helps people manage their pain. Ok, so we have an appointment in Sacramento with James' new physiatrist on August 3rd. More doctors... wow, I am tired just thinking about it...
I tend to work in waves when it comes to James' health care needs. I get on a roll and start calling every doctor and agency available to us to help get him what he needs to have as best a quality of life that he can have.. Then I get exhausted and I don't do a single thing for several weeks... and the cycle starts all over again..
On Friday, I was at appointments and on the phone non-stop. We saw the pediatrician in the morning, which took 2 hours. We got the pediatric daycare paperwork and wic paperwork signed, and we got copies of consultation reports from other doctors from the ped. for the pediatric daycare's records and Medi-Cal funding for them, so he can continue going there.. Then, when we got home, I made the appointment with the physiatrist, called the northern calfornia representative for the EPSDT section of Medi-Cal to find out about in-home nursing care (it would be great if we could have a nurse come to our house to help with things like James' catheterizations, suppositories, and even feeding issues), and left another note in the computer at dr. C's office, updating them on our appointment with the pediatrician and James' symptoms the last few days.
Needless to say, I was glad yesterday morning to wake up to the WEEKEND! Seth was at Aunt Cindy's working on the cabin, and the boys and I want to InMotion and went swimming. It was quite a job for one person to take two babies swimming, but we survived!! They had a BLAST. Then I took James to playcare, and he actually spent the night there while Josiah and I went to Aunt Lyndsey and Uncle Ryan's new house for Ryan's birthday party. It was a really, really fun party - Ryan made up a game show game, and even though I totally sucked at it, it was still very enjoyable and funny. Plus, I was TOTALLY relaxed, since I didn't have to FEED James, or do his catheter, or his suppository.... We stayed until MIDNIGHT, and then went home. We slept in until 8:30, which I haven't done in 4 years. You think I'm exaggerating, but I'm not! It was so easy to get ready for church, and go to church without vomit, wheelchair, medicines, etc....
We are planning a family trip to Lake Almanor for about 3 weeks from now with Michelle and Liam, and the Abkens. I am looking forward to it, but with some anxiety. Traveling with James is a lot of work. It would be a much more relaxing trip for me if we left James at home with a babysitter, but it would not be as enjoyable because it would feel like a piece of our family was missing the entire time :-( So, we have three options in this life when it comes to trips and just general, everyday outings: 1. Bring James, 2. Don't bring James, or 3. Just forget it, and stay home... and none of those options seem best :-(
Seth has been out of town the last two weekends, and I am really looking forward to having him HOME for a while! Pray for us when you think of us this week, because there is always so much on the calendar, lots of stress from everyday life stuff, and not much time to connect (plus, we are not SKILLED at connecting! haha) SO, we could use your prayers - for patience, grace on each other, a purposeful and godly agenda with each other, and simply some fun and carefree times... despite the disability / elephant in the room.
wow, i totally just vented. i should put a warning at the top of this post. but what's new? ;-P
I suspect tethered cord. The pediatrician suspects the same. She is calling the neurosurgeon's office to see if they would be willing to do another MRI. She is looking into physical therapy treatments for James, to alleviate the pain through massage, hot tub therapy, and some sort of ultrasound therapy.. The neurosurgeon referred us to a physiatrist. What the heck is a physiatrist? That's what I was thinking, so I looked it up. It is a doctor specializing in "the diagnosis and management of injuries and diseases causing pain, loss of function, and disability. Treatment plans often include the use of exercise, massage, heat, electricity (TENS), relaxation techniques, splints and braces, and local injections to relieve pain." Anther definition said that "Physical medicine and rehabilitation (PM&R), or physiatry ( or ), is a branch of medicine which aims to enhance and restore functional ability and quality of life to those with physical impairments or disabilities." Basically, it's a rehabilitation doctor.. who is like a physical therapist, but the next step up.. and helps people manage their pain. Ok, so we have an appointment in Sacramento with James' new physiatrist on August 3rd. More doctors... wow, I am tired just thinking about it...
I tend to work in waves when it comes to James' health care needs. I get on a roll and start calling every doctor and agency available to us to help get him what he needs to have as best a quality of life that he can have.. Then I get exhausted and I don't do a single thing for several weeks... and the cycle starts all over again..
On Friday, I was at appointments and on the phone non-stop. We saw the pediatrician in the morning, which took 2 hours. We got the pediatric daycare paperwork and wic paperwork signed, and we got copies of consultation reports from other doctors from the ped. for the pediatric daycare's records and Medi-Cal funding for them, so he can continue going there.. Then, when we got home, I made the appointment with the physiatrist, called the northern calfornia representative for the EPSDT section of Medi-Cal to find out about in-home nursing care (it would be great if we could have a nurse come to our house to help with things like James' catheterizations, suppositories, and even feeding issues), and left another note in the computer at dr. C's office, updating them on our appointment with the pediatrician and James' symptoms the last few days.
Needless to say, I was glad yesterday morning to wake up to the WEEKEND! Seth was at Aunt Cindy's working on the cabin, and the boys and I want to InMotion and went swimming. It was quite a job for one person to take two babies swimming, but we survived!! They had a BLAST. Then I took James to playcare, and he actually spent the night there while Josiah and I went to Aunt Lyndsey and Uncle Ryan's new house for Ryan's birthday party. It was a really, really fun party - Ryan made up a game show game, and even though I totally sucked at it, it was still very enjoyable and funny. Plus, I was TOTALLY relaxed, since I didn't have to FEED James, or do his catheter, or his suppository.... We stayed until MIDNIGHT, and then went home. We slept in until 8:30, which I haven't done in 4 years. You think I'm exaggerating, but I'm not! It was so easy to get ready for church, and go to church without vomit, wheelchair, medicines, etc....
We are planning a family trip to Lake Almanor for about 3 weeks from now with Michelle and Liam, and the Abkens. I am looking forward to it, but with some anxiety. Traveling with James is a lot of work. It would be a much more relaxing trip for me if we left James at home with a babysitter, but it would not be as enjoyable because it would feel like a piece of our family was missing the entire time :-( So, we have three options in this life when it comes to trips and just general, everyday outings: 1. Bring James, 2. Don't bring James, or 3. Just forget it, and stay home... and none of those options seem best :-(
Seth has been out of town the last two weekends, and I am really looking forward to having him HOME for a while! Pray for us when you think of us this week, because there is always so much on the calendar, lots of stress from everyday life stuff, and not much time to connect (plus, we are not SKILLED at connecting! haha) SO, we could use your prayers - for patience, grace on each other, a purposeful and godly agenda with each other, and simply some fun and carefree times... despite the disability / elephant in the room.
wow, i totally just vented. i should put a warning at the top of this post. but what's new? ;-P
1 comment:
i am exactly the same with spurts and times of inactivity dealing with health stuff...you are awesome!
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