Things are getting real. The coronavirus is sweeping the world and we are poorly prepared, as are most countries, to handle what's coming. And it's coming. Everything is shutting down, and I mean everything, in an attempt to 'flatten the curve". I worry about everyone in my family. It can be overwhelming and I find I have to distract myself with other things.
I believe I have assembled just about everything Sarah and I would need for the next few weeks, I certainly hope so. It's a little unsettling living in an apartment building because there are some shared spaces that I am trying to avoid as much as possible. Such as the mail room, the elevators, the laundry room. I guess that's it, not terrible, it is doable. We really just need to settle in and go nowhere. I will do laundry once a week and spray the machines with lysol, which I always do anyway so no change there. I figure I will grab my mail twice a week, its just bills anyway, which I pay online. I get groceries and medications delivered, which I spray down before unpacking. So that's it. The boys are getting their ducks in a row, I'm sure my granddaughter Elliot will be done with school very shortly.
It's a lot to take in, what's happening in the world. The risk to so many people. My age group is on the cusp of the danger territory and of course Sarah is high risk. And then there's my dad and Vivian. I can see out my window that the Metro is still running. I wonder what will happen with that. It's all very distressing. I pray we are all still standing when this is all over.
Thursday, March 12, 2020
Thursday, February 27, 2020
She's Different
A little bit of rambling is coming your way with this post because I am in a jumble.
I'm trying to adjust to what's new. She is not the same. How so? Well for one thing she was in bed at 9:20 tonight. She didn't nap today or yesterday, just lying there, kind of in and out of drowsiness. Usually, even without napping she would be up till 11 or so. But twice this week, around 8:30, she starts laughing until she's crying so the past 2 nights I have put her into bed early to head off the sobbing. It seems to be what she needs but I'm not used to the quiet evenings by myself. It feels weird and empty. All is not right with my world.
Also, I cannot get used to the stillness with which she sleeps. Yes, she takes clonazepam for sleep, but never has she slept so still. Barely moves a muscle the entire night. It feels so odd.
So many changes in such a short period of time. Right now it seems that every couple of days there is something new, different. It's really hard to keep up.
She's basically happy though, so I will focus on that. Lots of people are living in this world and they are not happy. She is, and I am grateful for it. But, I am losing my grip on her, she is starting to slip through my fingers. I can feel it. I wish she'd plateau for a while so I can have time to adjust, not sure that's going to happen though. ::sigh::
I'm trying to adjust to what's new. She is not the same. How so? Well for one thing she was in bed at 9:20 tonight. She didn't nap today or yesterday, just lying there, kind of in and out of drowsiness. Usually, even without napping she would be up till 11 or so. But twice this week, around 8:30, she starts laughing until she's crying so the past 2 nights I have put her into bed early to head off the sobbing. It seems to be what she needs but I'm not used to the quiet evenings by myself. It feels weird and empty. All is not right with my world.
Also, I cannot get used to the stillness with which she sleeps. Yes, she takes clonazepam for sleep, but never has she slept so still. Barely moves a muscle the entire night. It feels so odd.
So many changes in such a short period of time. Right now it seems that every couple of days there is something new, different. It's really hard to keep up.
She's basically happy though, so I will focus on that. Lots of people are living in this world and they are not happy. She is, and I am grateful for it. But, I am losing my grip on her, she is starting to slip through my fingers. I can feel it. I wish she'd plateau for a while so I can have time to adjust, not sure that's going to happen though. ::sigh::
Saturday, February 15, 2020
Mid February
Sarah is doing pretty well at the moment. I am still tweaking her feed/eating routine but her weight is remaining stable at 84, so that's good. I've ditched the Isosource completely and using Real Foods Blends along with her one meal by mouth daily. Waiting to see if insurance will cover. Truly, the best thing I could do for her is to get a Vitamix blender and blend all the typical foods she used to eat. Then just push them through her gtube. That way she could 'eat' anything. They are quite pricey so it's on the back burner for the moment.
At this point, for some reason, Sarah can only fall sleep if I roll her onto her left side and position her with a pillow or two. Also, she does not move at all during the night anymore. This is new. There are so many changes in the past few months, it's hard to adjust. Each change brings about my need to assess for other issues. For instance, her newly fisted right hand means I have to monitor her skin on her palm for breakdown and keep those nails real short. Her lack of movement at night means I am wrestling with whether she needs to be rolled during the night to her other side, but that means she will wake since she doesnt like that side. Plus it interrupts my sleep, which is a very bad thing for me, I have learned. Poor sleep leaves me mentally and physically drained which makes it much harder for me to handle what's happening with Sarah. So for now, she will sleep as she wishes.
This is a really difficult situation, there is no winning here. There is no control, no definite trajectory. My hands are tied as I watch her lose more and more of her abilities all of a sudden. She seems amazingly accepting however, not frustrated at all. She is relaxed and happy, wakes every morning with a big ole smile. For myself, on the other hand, it is very sad. My emotions are all over the place. One day up, the next day down. It's terribly, terribly hard.
I have joined a couple of online support groups and have read a few books on "anticipatory grief", which is what I am going through. I didn't know there was a word for it. The thing is, I just want to stay afloat as she goes down. I don't want to drown as I lose her. I don't want to lose myself as well as my daughter. I want to live on, enjoy my sons and grandchildren, all my family members, my friends too! It's easy to lose friends when going through this kind of thing. Not gonna lie, I can probably be a little depressing at times. But they are hanging in there, for that I am grateful.
Here she is on her second birthday:
At this point, for some reason, Sarah can only fall sleep if I roll her onto her left side and position her with a pillow or two. Also, she does not move at all during the night anymore. This is new. There are so many changes in the past few months, it's hard to adjust. Each change brings about my need to assess for other issues. For instance, her newly fisted right hand means I have to monitor her skin on her palm for breakdown and keep those nails real short. Her lack of movement at night means I am wrestling with whether she needs to be rolled during the night to her other side, but that means she will wake since she doesnt like that side. Plus it interrupts my sleep, which is a very bad thing for me, I have learned. Poor sleep leaves me mentally and physically drained which makes it much harder for me to handle what's happening with Sarah. So for now, she will sleep as she wishes.
This is a really difficult situation, there is no winning here. There is no control, no definite trajectory. My hands are tied as I watch her lose more and more of her abilities all of a sudden. She seems amazingly accepting however, not frustrated at all. She is relaxed and happy, wakes every morning with a big ole smile. For myself, on the other hand, it is very sad. My emotions are all over the place. One day up, the next day down. It's terribly, terribly hard.
I have joined a couple of online support groups and have read a few books on "anticipatory grief", which is what I am going through. I didn't know there was a word for it. The thing is, I just want to stay afloat as she goes down. I don't want to drown as I lose her. I don't want to lose myself as well as my daughter. I want to live on, enjoy my sons and grandchildren, all my family members, my friends too! It's easy to lose friends when going through this kind of thing. Not gonna lie, I can probably be a little depressing at times. But they are hanging in there, for that I am grateful.
Here she is on her second birthday:
And here is my sweet girl now:
Sunday, February 02, 2020
Plugging along
I am figuring out a feeding schedule for Sarah. I am aiming to give her 3 'meals' a day because that is all her stomach has ever known and I think she can handle it. So, that means 2 bolus meals and one meal, by mouth, of mac and cheese because she can still eat that. I really dont want to take food fully away from her unless I have to, she loves to eat and looks forward to meals. No feeding pump for now, at least.
The issue is what type of feed to give her thru the GTube. Right now I have Isosource 1.5 as recommended by her dietician. She tolerates it well overall, but when I give it for breakfast (240 ml) it just doesn't hold her well. She is hungry but can't take any more fluid volume than the 240. So I am trying Real Food Blends. Basically its prepared 'real' food that comes in pouches. It's much heavier than the Isosource, so I think its the answer for breakfast. For the next meal she gets mac and cheese and a banana and maybe vanilla pudding if she is still hungry. Then for the last meal she gets the Isosource because she never ate much anyway at this meal so the isosource should be plenty. The amount I give her depends on how many calories she still needs to round out her day.
So that's the latest on the food front. I'm going to keep up this schedule for a week or two to see how it goes. If she doesn't throw me any curve balls then I will see if the Real Food Blends can be covered by her insurance.
One odd thing this week, the past couple of evenings her skin gets very warm and her pulse goes up. Her hands are hot, which is unusual for her, but no true fever. So last evening I laid her down in her bed to get a better look at her and she relaxed, she cooled right off and her pulse returned to the usual. She was happy and giggly. I let her rest there until bedtime. All was well. Nothing ever stays the same right now, lots of changes with this awful BPAN.
The issue is what type of feed to give her thru the GTube. Right now I have Isosource 1.5 as recommended by her dietician. She tolerates it well overall, but when I give it for breakfast (240 ml) it just doesn't hold her well. She is hungry but can't take any more fluid volume than the 240. So I am trying Real Food Blends. Basically its prepared 'real' food that comes in pouches. It's much heavier than the Isosource, so I think its the answer for breakfast. For the next meal she gets mac and cheese and a banana and maybe vanilla pudding if she is still hungry. Then for the last meal she gets the Isosource because she never ate much anyway at this meal so the isosource should be plenty. The amount I give her depends on how many calories she still needs to round out her day.
So that's the latest on the food front. I'm going to keep up this schedule for a week or two to see how it goes. If she doesn't throw me any curve balls then I will see if the Real Food Blends can be covered by her insurance.
One odd thing this week, the past couple of evenings her skin gets very warm and her pulse goes up. Her hands are hot, which is unusual for her, but no true fever. So last evening I laid her down in her bed to get a better look at her and she relaxed, she cooled right off and her pulse returned to the usual. She was happy and giggly. I let her rest there until bedtime. All was well. Nothing ever stays the same right now, lots of changes with this awful BPAN.
Saturday, January 25, 2020
And We’re Back
Well hello,
It’s been quite a while, actually over three years since my last post. There’s been a lot going on with Sarah in the past six months, so I am going to get right into it. She was diagnosed with BPAN a couple of years ago on Valentine's Day. I had pretty much figured that I would never know what her DNA secret was but it was finally uncovered by genetics here at Childrens Hospital in DC. It is very rare, researchers are learning more and more about it as more people/children are diagnosed. Sarah is part of a research study out in Oregon. Anyway, there is no treatment, no cure, it is degenerative. She will continue to decline and her lifespan is pretty short. If you'd like to read more about it, there are 2 links on the side bar.
So specifically I will share what she has been experiencing recently. Sarah has gotten tighter overall. Her right arm, which has always been her ‘usable’ arm is getting pulled more towards her chest with her hand fisted. She can only roll side to side in her bed and actually she can only roll from her right side to her left side, once she gets there she’s stuck and she can no longer roll over onto her stomach and get up on her elbows like she could do a year ago. She suddenly developed a strong tongue thrust with most foods and could no longer take her medications so a GTube was placed a month ago on an emergent basis. That went smoothly after a five day inpatient stay and I am trying to figure out pump feedings versus bolus feedings versus how much she can take in of certain foods by mouth and all that goes with figuring that out. I weigh her every Friday and she’s staying at 84 pounds which is a good weight for her, anything more and I won’t be able to lift her so where she is right now is great. Actually anything between 80 and 84 pounds is the target.
Anyway it’s much easier now to just give her her meds and her fluids, and I just count calories every day to make sure she’s getting enough between what she can take in and what formula feedings are. So we are getting into our new normal routine and it’s going pretty well. The hardest thing I’m finding for myself is that with BPAN there is a dramatic decline sometime in the 20s. So I feel like this is what’s beginning to happen and I don’t know if her decline is going to go swiftly or slowly and if she will even survive the decline to last a few more years. So it’s very stressful adjusting to what’s happening with her. Mostly for the past years she’s been fairly stable with just slight gradual loss of some skills. This is all new and I am trying to find some ways to cope because I have a feeling its gonna require some endurance.
She remains happy and medically healthy, she still loves to go out in the car and we get around as much as we can. Because it’s flu season we do have to lay somewhat low to protect her from any viruses that are going around. She still has her big smile and her giggles and music is still number one on her list. Her niece is getting older, She is now four years old and she enjoys reading books to Sarah so they have a common activity that they can do together.
So that’s a brief overview of what has been going on with Sarah recently and I’ll get into more as I start posting more frequently. Here’s a few photos of my girl for now.
It’s been quite a while, actually over three years since my last post. There’s been a lot going on with Sarah in the past six months, so I am going to get right into it. She was diagnosed with BPAN a couple of years ago on Valentine's Day. I had pretty much figured that I would never know what her DNA secret was but it was finally uncovered by genetics here at Childrens Hospital in DC. It is very rare, researchers are learning more and more about it as more people/children are diagnosed. Sarah is part of a research study out in Oregon. Anyway, there is no treatment, no cure, it is degenerative. She will continue to decline and her lifespan is pretty short. If you'd like to read more about it, there are 2 links on the side bar.
So specifically I will share what she has been experiencing recently. Sarah has gotten tighter overall. Her right arm, which has always been her ‘usable’ arm is getting pulled more towards her chest with her hand fisted. She can only roll side to side in her bed and actually she can only roll from her right side to her left side, once she gets there she’s stuck and she can no longer roll over onto her stomach and get up on her elbows like she could do a year ago. She suddenly developed a strong tongue thrust with most foods and could no longer take her medications so a GTube was placed a month ago on an emergent basis. That went smoothly after a five day inpatient stay and I am trying to figure out pump feedings versus bolus feedings versus how much she can take in of certain foods by mouth and all that goes with figuring that out. I weigh her every Friday and she’s staying at 84 pounds which is a good weight for her, anything more and I won’t be able to lift her so where she is right now is great. Actually anything between 80 and 84 pounds is the target.
Anyway it’s much easier now to just give her her meds and her fluids, and I just count calories every day to make sure she’s getting enough between what she can take in and what formula feedings are. So we are getting into our new normal routine and it’s going pretty well. The hardest thing I’m finding for myself is that with BPAN there is a dramatic decline sometime in the 20s. So I feel like this is what’s beginning to happen and I don’t know if her decline is going to go swiftly or slowly and if she will even survive the decline to last a few more years. So it’s very stressful adjusting to what’s happening with her. Mostly for the past years she’s been fairly stable with just slight gradual loss of some skills. This is all new and I am trying to find some ways to cope because I have a feeling its gonna require some endurance.
She remains happy and medically healthy, she still loves to go out in the car and we get around as much as we can. Because it’s flu season we do have to lay somewhat low to protect her from any viruses that are going around. She still has her big smile and her giggles and music is still number one on her list. Her niece is getting older, She is now four years old and she enjoys reading books to Sarah so they have a common activity that they can do together.
So that’s a brief overview of what has been going on with Sarah recently and I’ll get into more as I start posting more frequently. Here’s a few photos of my girl for now.
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