A Week, Briefly (4/15/19)
3 chiropractic visits
2 psychiatric visits
2 dental check ups
1 doctor visit
2 trips to the pharmacy . . .
That's a lot of medical stuff for us to deal with in one week. I hope this is not our new normal.
Monday was full of life-learning experiences--and not the warm fuzzy kind.
Pixie's back is quite hurt. Our chiropractor is confident he can fix the problem, but we're looking at several weeks of regular appointments and many missed dance lessons.
Dad took kids on bike outings--2 sets for 2 skill levels. Baymax took a dive over his handlebars. I'm just glad he was wearing a helmet! I have to keep working at not wondering what might have been without a helmet.
And Brother had an epic meltdown that defies description--it lasted over 3 hours. Ever since my initial rejoicing at how magically his meds helped him, he's been a little bit worse each day. Now he's worse on the meds than off. On Monday night I was more than a little bit glad that Sir Walter Scott was at home to help deal with him. With any luck our Wednesday check up with his psychiatrist will have good results.
But Ladybug finished her phonics workbook!
And Super Star finished Saxon pre-algebra!!!!!
Little Princess finished her creative writing notebook, so she started some spelling and language arts (no link--the site I got it from has closed) activities that I had gathering dust on a shelf. She won't have to finish either book; I just wanted her to have something to keep her organized and challenged into May when we'll be ready to call it quits and see what we can make of a summer break.
The teens turned in their Insight Journals for Unit 9. As usual, they did great work, and Super Star's made me cry happy tears. She's really working hard at becoming a stalwart young woman.
Tuesday was kind of a regular sort of day--lots of school, and I did the grocery shopping that had to be done due to being off schedule for the past 2 Saturdays.
The teens turned in their unit 9 drawings (it's of a random child included in the unit book--no one we know) and took the unit exam.
Only unit 10 to go!
On Wednesday, Brother's psychiatrist and I talked over what's been happening with Brother and what our options are. We agreed to try another med, but she requested that we check in in 2 weeks instead of 4 because of how unusual his reaction to the first med was. She gave me careful instructions about giving him teeny-tiny doses to be increased incrementally as long as he tolerated them.
But he didn't even tolerate the first one.
He was fidgety but trying to cooperate before he got his first dose; within an hour he was openly defiant and throwing things at me.
I called the psychiatrist's office and left a message.
We'll see what happens.
Whether she can see us earlier or not, I am not giving him any of the meds we have in the house.
I do trust this psychiatrist. Every time I see her I am overcome by a sense of how much she cares and how much she knows. The first two meds may not have been right, but she had compelling reasons for prescribing them, and I am grateful for what we are learning.
I just wish it were easier for Brother.
And Pixie is having some life-learning experiences with her professor at the community college. She is doing very well in his class, but he is rather fierce about using sexually explicit and graphically violent movies in class. Pixie has spoken to him more than once about the content, and at first he assured her that there would be nothing rated-R shown. That has not been true. Since that first conversation Pixie has asked for alternate assignments, but he has turned her down flat and threatened her with a failing grade. I helped her look up her rights in the student handbook, and showed her how to contact the Dean of Students. She made that difficult call, and she got off the phone smiling with relief over the fact that she does have the right to be excused from graphic content, and she has the right to do alternate work for an equal grade. I helped her compose a polite-but-firm email to the professor explaining what she found out. She made no threat to him at all, but the next step is to contact his department chair and file an official grievance.
We are hoping it does not go that far.
Whether he responds well or not, I am grateful to see and help Pixie stand up for what she believes is right.
Church activities for everyone age 8 and up cleared out most of the house and left the little ones and me with a quiet, early night.
Thursday was so long.
The teens started their language arts Unit 10 booklet, and we started reading Dracula for our classics book club.
Then I raced off to the doctor because Mister Man is sick again. He's not yet throwing up the way he was a year and a half ago, but he's often curled up and writhing with abdominal pain. We had an hour long consultation with our regular doctor who recommended MiraLax (this for a child with regular bowel movements?).
:(
She also recommended a return to the GAPS diet.
The GAPS diet will probably clear up his symptoms, but it feels so overwhelming right now that I'm deeply in need of a good cry.
I know the MiraLax is just her way of admitting she doesn't know what's going on, and she's jumping through necessary hoops before she's allowed to refer us to a gastroenterologist.
I'm trying to remember that she's got insurance rules to follow and to be grateful that we're leaving a paper trail for if we ever need a big procedure to help our boy stop hurting.
The teens babysat all day, because by the time Mister Man and I got home, there was barely time to grab a snack before heading back out the door to return dance costumes and take Beowulf to the psychiatrist's office for his official diagnosis:
ADHD--Combined Type.
He's in a different medical system than his siblings are, so now I have to get an appointment with his primary care doc and get her to refer him to the ADHD clinic.
But we are moving forward.
I am grateful.
After that appointment I came home and worked with small people on individual school subjects . . . Ladybug was completely incapable of concentrating on anything for more than 15 seconds at a time. I don't like how her meds made her too passive, so I took her off them some days ago after following advice to give her time to adapt, but keeping her off them is more than we can bear. Even with 3 teens watching her while I was gone, she managed to get more than half her body off our second story deck before she was caught and returned to safety.
We may have to live with zombie-state until Monday when we have her next psych consult.
It's a hard choice.
A blessing for Thursday is that Pixie met with friends at the temple to do some service there. I am grateful when my children exercise their faith.
Friday morning dawned sunny and cold. The kids found their coats and played outside all morning while I worked one-on-one with Ladybug to get some math done (I didn't give her the med after all).
Pixie went to the chiropractor--she's healing very well, but she is still restricted from dancing. When she got home, the teens and I read for nearly an hour from Dracula; I checked their Unit 10 homework; Pixie, Belle, and I checked 3 days of Spanish translation homework.
The young ones and I did a bit of Academy. We only have 8 lessons left in our history book, and we finished reading The Children's Book of Virtues.
Mister Man is feeling better after 24 hours of being grain-free, so he was able to do his individual schoolwork happily and efficiently.
Pixie did have to contact the department chair about her history class because her professor never answered her. Within 2 hours, she had a reply from the chair informing her that her professor was preparing a non-media alternate assignment.
First we rejoiced!
Then we had a little chat about how the new assignment might be really, really hard and a lot more work than watching a video, but that she would just smile and be proactively thankful to the teacher for working with her . . . no matter what his personal reaction might be.
Brother, Beowulf, and Ladybug struggled through their schoolwork, but there were no truly difficult behaviors, and the afternoon is settling into peaceful sunshine and Dad doing chores outside--which makes the kids happy to be out near him.
Here's a photo of our not-quite-finished Holy Week poster that we've worked on a little each day. (Thank you, thank you, thank you to The Domestic Notebook for the idea!)
We'll let it rest over Saturday because I can't get the teens organized on a Saturday morning anymore, and our Morning Meetings are shorter and only with the younger 8 kids. But on Sunday morning as we have our Easter breakfast, we'll finish putting up our images and read some scriptures about the resurrection together.
And lastly, these three filled all of the Easter eggs for the egg hunt we're going to have with cousins after church on Sunday. They look serious here, but they giggled most of the time, saying, "It's more fun to fill them than find them!"
I'm grateful to not have to fill eggs until midnight on Saturday night!!!! :)
2 psychiatric visits
2 dental check ups
1 doctor visit
2 trips to the pharmacy . . .
That's a lot of medical stuff for us to deal with in one week. I hope this is not our new normal.
Monday was full of life-learning experiences--and not the warm fuzzy kind.
Pixie's back is quite hurt. Our chiropractor is confident he can fix the problem, but we're looking at several weeks of regular appointments and many missed dance lessons.
Dad took kids on bike outings--2 sets for 2 skill levels. Baymax took a dive over his handlebars. I'm just glad he was wearing a helmet! I have to keep working at not wondering what might have been without a helmet.
And Brother had an epic meltdown that defies description--it lasted over 3 hours. Ever since my initial rejoicing at how magically his meds helped him, he's been a little bit worse each day. Now he's worse on the meds than off. On Monday night I was more than a little bit glad that Sir Walter Scott was at home to help deal with him. With any luck our Wednesday check up with his psychiatrist will have good results.
But Ladybug finished her phonics workbook!
And Super Star finished Saxon pre-algebra!!!!!
Little Princess finished her creative writing notebook, so she started some spelling and language arts (no link--the site I got it from has closed) activities that I had gathering dust on a shelf. She won't have to finish either book; I just wanted her to have something to keep her organized and challenged into May when we'll be ready to call it quits and see what we can make of a summer break.
The teens turned in their Insight Journals for Unit 9. As usual, they did great work, and Super Star's made me cry happy tears. She's really working hard at becoming a stalwart young woman.
Tuesday was kind of a regular sort of day--lots of school, and I did the grocery shopping that had to be done due to being off schedule for the past 2 Saturdays.
The teens turned in their unit 9 drawings (it's of a random child included in the unit book--no one we know) and took the unit exam.
 |
| Super Star's |
 |
| Belle's |
 |
| Pixie's (This drawing gave her fits! She finally gave up and declared it done.) |
Only unit 10 to go!
On Wednesday, Brother's psychiatrist and I talked over what's been happening with Brother and what our options are. We agreed to try another med, but she requested that we check in in 2 weeks instead of 4 because of how unusual his reaction to the first med was. She gave me careful instructions about giving him teeny-tiny doses to be increased incrementally as long as he tolerated them.
But he didn't even tolerate the first one.
He was fidgety but trying to cooperate before he got his first dose; within an hour he was openly defiant and throwing things at me.
I called the psychiatrist's office and left a message.
We'll see what happens.
Whether she can see us earlier or not, I am not giving him any of the meds we have in the house.
I do trust this psychiatrist. Every time I see her I am overcome by a sense of how much she cares and how much she knows. The first two meds may not have been right, but she had compelling reasons for prescribing them, and I am grateful for what we are learning.
I just wish it were easier for Brother.
And Pixie is having some life-learning experiences with her professor at the community college. She is doing very well in his class, but he is rather fierce about using sexually explicit and graphically violent movies in class. Pixie has spoken to him more than once about the content, and at first he assured her that there would be nothing rated-R shown. That has not been true. Since that first conversation Pixie has asked for alternate assignments, but he has turned her down flat and threatened her with a failing grade. I helped her look up her rights in the student handbook, and showed her how to contact the Dean of Students. She made that difficult call, and she got off the phone smiling with relief over the fact that she does have the right to be excused from graphic content, and she has the right to do alternate work for an equal grade. I helped her compose a polite-but-firm email to the professor explaining what she found out. She made no threat to him at all, but the next step is to contact his department chair and file an official grievance.
We are hoping it does not go that far.
Whether he responds well or not, I am grateful to see and help Pixie stand up for what she believes is right.
Church activities for everyone age 8 and up cleared out most of the house and left the little ones and me with a quiet, early night.
Thursday was so long.
The teens started their language arts Unit 10 booklet, and we started reading Dracula for our classics book club.
Then I raced off to the doctor because Mister Man is sick again. He's not yet throwing up the way he was a year and a half ago, but he's often curled up and writhing with abdominal pain. We had an hour long consultation with our regular doctor who recommended MiraLax (this for a child with regular bowel movements?).
:(
She also recommended a return to the GAPS diet.
The GAPS diet will probably clear up his symptoms, but it feels so overwhelming right now that I'm deeply in need of a good cry.
I know the MiraLax is just her way of admitting she doesn't know what's going on, and she's jumping through necessary hoops before she's allowed to refer us to a gastroenterologist.
I'm trying to remember that she's got insurance rules to follow and to be grateful that we're leaving a paper trail for if we ever need a big procedure to help our boy stop hurting.
 |
| Nature Angel crocheted a hat this afternoon. Here's Little Princess modeling it. |
The teens babysat all day, because by the time Mister Man and I got home, there was barely time to grab a snack before heading back out the door to return dance costumes and take Beowulf to the psychiatrist's office for his official diagnosis:
ADHD--Combined Type.
He's in a different medical system than his siblings are, so now I have to get an appointment with his primary care doc and get her to refer him to the ADHD clinic.
But we are moving forward.
I am grateful.
After that appointment I came home and worked with small people on individual school subjects . . . Ladybug was completely incapable of concentrating on anything for more than 15 seconds at a time. I don't like how her meds made her too passive, so I took her off them some days ago after following advice to give her time to adapt, but keeping her off them is more than we can bear. Even with 3 teens watching her while I was gone, she managed to get more than half her body off our second story deck before she was caught and returned to safety.
We may have to live with zombie-state until Monday when we have her next psych consult.
It's a hard choice.
A blessing for Thursday is that Pixie met with friends at the temple to do some service there. I am grateful when my children exercise their faith.
Friday morning dawned sunny and cold. The kids found their coats and played outside all morning while I worked one-on-one with Ladybug to get some math done (I didn't give her the med after all).
 |
| Baymax is Dad's assistant in fixing the broken plug/drain. |
Pixie went to the chiropractor--she's healing very well, but she is still restricted from dancing. When she got home, the teens and I read for nearly an hour from Dracula; I checked their Unit 10 homework; Pixie, Belle, and I checked 3 days of Spanish translation homework.
The young ones and I did a bit of Academy. We only have 8 lessons left in our history book, and we finished reading The Children's Book of Virtues.
Mister Man is feeling better after 24 hours of being grain-free, so he was able to do his individual schoolwork happily and efficiently.
Pixie did have to contact the department chair about her history class because her professor never answered her. Within 2 hours, she had a reply from the chair informing her that her professor was preparing a non-media alternate assignment.
First we rejoiced!
Then we had a little chat about how the new assignment might be really, really hard and a lot more work than watching a video, but that she would just smile and be proactively thankful to the teacher for working with her . . . no matter what his personal reaction might be.
Brother, Beowulf, and Ladybug struggled through their schoolwork, but there were no truly difficult behaviors, and the afternoon is settling into peaceful sunshine and Dad doing chores outside--which makes the kids happy to be out near him.
Here's a photo of our not-quite-finished Holy Week poster that we've worked on a little each day. (Thank you, thank you, thank you to The Domestic Notebook for the idea!)
We'll let it rest over Saturday because I can't get the teens organized on a Saturday morning anymore, and our Morning Meetings are shorter and only with the younger 8 kids. But on Sunday morning as we have our Easter breakfast, we'll finish putting up our images and read some scriptures about the resurrection together.
And lastly, these three filled all of the Easter eggs for the egg hunt we're going to have with cousins after church on Sunday. They look serious here, but they giggled most of the time, saying, "It's more fun to fill them than find them!"
I'm grateful to not have to fill eggs until midnight on Saturday night!!!! :)
What a whirlwind! Praying over all the needs and meds and doctors and things to figure out.
ReplyDeleteI also wanted to offer a few suggestions/thoughts in regards to Mister Man. I would call the doc and request x-ray looking at bowels for constipation. If they want you to try Miralax (which we are well familiar with due to Mason's nerve damage) then they need to be willing to look first and see if there is an issue. Constipation can be sneaky (higher up, distended colon from long term constipation, diarrhea/softer bowel movements travelling around a blockage/constipation so you think they are going normally but aren't, etc). BUT Miralax is under study right now and isn't something I would want to rely on long term if I had any other choice. Mason, unfortunately, doesn't have any choice, unless we do life-altering major surgeries that have a high complication rate.
Ask for referrals to a GI doc, obviously, with the grain causing obvious issues.
Has he done allergy testing? It is another avenue, but most likely you are looking at needing GI, not just allergy.
And my biggest tip of all - BE THE SQEAKY WHEEL. Call and request daily or every other day for these things until they get done. Yes, there is a process of things doctors often need to do according to insurance, but being the squeaky wheel often expedites that process a bit. Even make a call to insurance explaining that your child needs a GI doctor and checking if he needs a referral or if you can call and set up an appointment with one now. I know it is hard to make time to sit on hold every day. But the wait list can be atrocious if you aren't squeaky. If you are given an appointment more than 2-3 weeks away, accept it, but also ask for a number to call to check for cancellations. Then call every few days to see if they have had anything open up earlier.
Hang in there on food changes, it stinks so bad to add one more thing to an overfull plate. Make a short list of easy foods/meals that work for the restrictions you want to do for Mister Man, that he will actually eat. Then prep on weekends or any time you get someone over age 12 available to watch the other kids. The list takes away the need for brain power - you don't have to figure out what to make him that he will actually eat. The prep just helps speed up meals for him on days when you need a time break. ((HUGS))
Hugs to you. What a terribly hard season. I second Tristan's advice. The x-ray request is excellent. Our Katie needed that x-ray and then Miralax due to the abuse she received in infancy. She used it for several years. I would also ask for a nutritionist referral. A nutritionist can come up with a complete diet and menu based on what your child likes to eat and what may work. A nutritionist can figure out all the calories and help you come up with a balanced easier diet without draining your brain more. Prayers to you.
ReplyDeleteBlessings, Dawn
That's horrible what Pixie is dealing with her professor. Ugh! I hope all the medical issues work out. You are so amazing! I will keep you and your family in my prayers. Oh, and the unit 9 drawings are awesome! I like the Holy Week poster, too.
ReplyDeleteI have heard similar problems from other parents about graphic content in college classes. It is ridiculous that are putting these types of things in and that these young adults are having to fight these issues. I hope it all works out for her. Those drawings are amazing!!! So much artistic talent in your family. Praying that all of the medical issues and medicines get worked out for everyone!
ReplyDelete