WOW!
It Has Been Years!
I mean, I'm glad I don't have this faithful following or everyone would be pretty upset that just suddenly, nothing, zip, nada, for the last.... 3 years!!!
I clearly cannot update the last 3 years, maybe bits and pieces but that would be so hard. I actually thought many times to post about the events of 2020, but honestly, all you people made everything SO hard for us that I didn't even want to open that bag of worms. I was so busy trying to keep my head above water and do what needs to be done for my family and son, while everyone else was going Berserk!!! I just couldn't even! So lets just not!
Maybe we will stick to this for now. Get back into it very slowly. Try to move on and move forward!
We did survive all the events from 2020 and that is about good enough! So on to the rest of the 20s hoping for easy sailing.
Hahah.... probably not!
Tuesday, September 13, 2022
2022
Monday, October 21, 2019
Catching up!
Well, there went spring and summer, and here we are into fall and just now making an update. That's ok though, because this is more so for me to look back at than anything else or maybe to give to Sol one day, so that is the only reason I should try to keep it updated. I wanted to name this post "the adventures of school with Sol" but I didn't realize I haven't updated since last spring!! Maybe I will still do it, we will see where this post takes us I guess.
So where we last left off I believe I was talking about the nursing change. Wow did I not realize how much that was going to affect our household :( . I mentioned that I had two nurses this time around, well that didn't last very long. The nurse that was from the agency was not certified in peds vent and once Sol hit a sickness (which was maybe 4 weeks into having this nurse) she and I, were both no longer comfortable with her taking care of Sol. Then I was down to just my part time nurse and waited for the agency to send someone else. Well the first person they sent was not able to hold Sol so that didn't work. The next person they sent was a brand new nurse who had never seen a trach or gtube before and she did not feel comfortable learning the cares, or maybe she wanted full time I'm not exactly sure. After waiting awhile to see who the agency would send next, instead they called me and said they were dropping our case because they had no one interested >:| Just like that. They gave me 4 days notice that they were dropping me, which is fine and all but once they drop sols plan of care that is through the state, I lose my part time nurse as well. I this has been a very upsetting time dealing with this very crappy nursing agency. Luckily someone volunteered to help me switch over to to the independent agencies which is still not done yet but hopefully soon, then I can hire whatever nurse I want to whenever and however I would like. Nursing agencies are the worst!!
Besides that, Sol did go to summer school this year! It was A Lot of work and it sort of freaked me out for the thought of him going to actual school in the fall. It was 4 hours long 4 days a week I think? But we usually only did 2 days a week one time 3 days. There were a lot of kids! And they were all so very grabby and touchy and it made me constantly very nervous. But we learned a lot from summer school and what we need to bring to school and how to modify certain things. I am very impressed with the teachers and how they work hard at modifying the school for Sol. During the summer Sol was really into going down the slides on my lap, but if you can imagine, that turned out to be A LOT of work for me! One teacher brought in her baby carrier wrap thing, and we tried wrapping him to me. That worked really well, gave me a little more use of my hands and Sol seemed to like it pretty well. It is still a lot for me to constantly be going up and down the stairs to get to the slides, but this became much better until he became super into the swings. Swings and me do not mix anymore, I went one day with him on the swing and I was sick the rest of the day! We decided his blue chair would have to work on the swings from now on since I have lost my spinning abilities.
His main teacher for summer school also worked on what we could use to have him travel around the school. I was using his wagon with his blue chair in it, but the wagon is big and hard to turn and kids love wagons so everyone wanted to be in the wagon. After a little searching she did, on her own time(!) she thought about one of those sit and stand strollers and stick the chair in that. She ended up getting it during summer school but Sol got sick the last week so we didn't get it until after school started but we have been using it ever since! It works perfect and it was free! Compared to spending a bunch of dollars on medical strollers... who would have thought?
The other big thing we did starting in the summer was starting outpatient therapy at the CP center. Although this is an hour drive once a week, Sol has figured out a way to go down slides by himself! Which is amazing for me! He has also started to move his head back and forth when he is laying against us, and all this happened after only 2 weeks of sessions. So we are still doing the outpatient therapy up until the end of the year, it has been so amazing to see him gain more and more strength as he grows so we definitely want to give him all the support he needs to keep getting stronger.
Turns out there is way too much for me to catch up on from spring to summer to fall, so that is the basics of what our summer consisted of. Summer school. Preparing for actual school. Which he is now in! We started with two days a week and soon we will have his IEP meeting where one of the things they wanted to talk about was having him come to school as many days as possible. So this week is our first week trying 3 days, maybe if I am feeling adventurous we will come in for the 4th day too... we will see. Now that we have things situated more at school with what he will sit in, adaptions we need to make, it does make school easier to go to, so as long as me and Sol arent totally wiped out, we will keep attempting the 3 days a week at school. I guess I will have to do a different update of the adventures of sol at school... or however I was going to word it. This seems to have gotten too long already!
So where we last left off I believe I was talking about the nursing change. Wow did I not realize how much that was going to affect our household :( . I mentioned that I had two nurses this time around, well that didn't last very long. The nurse that was from the agency was not certified in peds vent and once Sol hit a sickness (which was maybe 4 weeks into having this nurse) she and I, were both no longer comfortable with her taking care of Sol. Then I was down to just my part time nurse and waited for the agency to send someone else. Well the first person they sent was not able to hold Sol so that didn't work. The next person they sent was a brand new nurse who had never seen a trach or gtube before and she did not feel comfortable learning the cares, or maybe she wanted full time I'm not exactly sure. After waiting awhile to see who the agency would send next, instead they called me and said they were dropping our case because they had no one interested >:| Just like that. They gave me 4 days notice that they were dropping me, which is fine and all but once they drop sols plan of care that is through the state, I lose my part time nurse as well. I this has been a very upsetting time dealing with this very crappy nursing agency. Luckily someone volunteered to help me switch over to to the independent agencies which is still not done yet but hopefully soon, then I can hire whatever nurse I want to whenever and however I would like. Nursing agencies are the worst!!
Besides that, Sol did go to summer school this year! It was A Lot of work and it sort of freaked me out for the thought of him going to actual school in the fall. It was 4 hours long 4 days a week I think? But we usually only did 2 days a week one time 3 days. There were a lot of kids! And they were all so very grabby and touchy and it made me constantly very nervous. But we learned a lot from summer school and what we need to bring to school and how to modify certain things. I am very impressed with the teachers and how they work hard at modifying the school for Sol. During the summer Sol was really into going down the slides on my lap, but if you can imagine, that turned out to be A LOT of work for me! One teacher brought in her baby carrier wrap thing, and we tried wrapping him to me. That worked really well, gave me a little more use of my hands and Sol seemed to like it pretty well. It is still a lot for me to constantly be going up and down the stairs to get to the slides, but this became much better until he became super into the swings. Swings and me do not mix anymore, I went one day with him on the swing and I was sick the rest of the day! We decided his blue chair would have to work on the swings from now on since I have lost my spinning abilities.
His main teacher for summer school also worked on what we could use to have him travel around the school. I was using his wagon with his blue chair in it, but the wagon is big and hard to turn and kids love wagons so everyone wanted to be in the wagon. After a little searching she did, on her own time(!) she thought about one of those sit and stand strollers and stick the chair in that. She ended up getting it during summer school but Sol got sick the last week so we didn't get it until after school started but we have been using it ever since! It works perfect and it was free! Compared to spending a bunch of dollars on medical strollers... who would have thought?
The other big thing we did starting in the summer was starting outpatient therapy at the CP center. Although this is an hour drive once a week, Sol has figured out a way to go down slides by himself! Which is amazing for me! He has also started to move his head back and forth when he is laying against us, and all this happened after only 2 weeks of sessions. So we are still doing the outpatient therapy up until the end of the year, it has been so amazing to see him gain more and more strength as he grows so we definitely want to give him all the support he needs to keep getting stronger.
Turns out there is way too much for me to catch up on from spring to summer to fall, so that is the basics of what our summer consisted of. Summer school. Preparing for actual school. Which he is now in! We started with two days a week and soon we will have his IEP meeting where one of the things they wanted to talk about was having him come to school as many days as possible. So this week is our first week trying 3 days, maybe if I am feeling adventurous we will come in for the 4th day too... we will see. Now that we have things situated more at school with what he will sit in, adaptions we need to make, it does make school easier to go to, so as long as me and Sol arent totally wiped out, we will keep attempting the 3 days a week at school. I guess I will have to do a different update of the adventures of sol at school... or however I was going to word it. This seems to have gotten too long already!
Well, there we go for a small update from summer. I will make a list of all the other things we did during summer though.
- Celebrated last day of school!
- Went to Smash and Splash at Kalahari
- Got his first salon hair cut! (Sister donated her hair!)
- Ate/tasted a lot of pickles!
- Went to strawberry fest and petted goats!
- Had a sleepover with grandma and grandpa at sols house!
- Went to animal haven zoo
- Visited bay beach with his cousins!
- Saw Daniel Tiger at the childrens museum!!!
- "worked" at grandpas shop
- Saw Fireworks for the first time!!! and Loved them!
- Went to 2 4th of july parades!
- Caught cold #1 in july
- Ate fresh picked Strawberries!
- Saw his Great grandma
- Got an adaptive swing at the park by our house so he can swing every day now!
- Played in the sprinklers!
- Survived a tornado!!
- Went to big sisters Lion King Play
- Played in the rain
- Played with his friend Josiah at the park!
- Went in a space ship at a fun museum in the dells
- Met daddy's friends from brasil!
- Rode a pony!!
- Spent the night in Chicago!
- Saw the big bean in Chicago
- Played in the great lakes at Chicago!
- Went to the Jelly Belly factory!
- Got sick with cold #2
- Went to the fair
- Sat in a Police Car!!!
- Went Swimming!
- Signed up for School!
- Attended his first day of school!!!
Boy that is quite the list! I guess we did more this summer than I thought.. but now we are all caught up!
Friday, May 17, 2019
Spring updates
There have been a lot of changes in the last couple of weeks here. Our nurse that we had for almost 3 years took a new job at a new company, so the last month or some, we have spent trying to replace nursing. During that time that we had no nursing, Sol was going everywhere I went! Grocery shopping, picking up May from school, well those were basically the only things we were doing but it is a haul to bring him all around with me. It is a little good thing bad thing type deal, it just takes me longer to load him and unload him so I have to really watch my time. It is great for him though because it helps him experience many things and also helps to get his energy out. Again, good thing band thing going on there. Left me very tired by the end of the day from trucking him all around, and he has really been into me holding him and walking around with him, so every day he tells me, "mama walk" but he gets heavy fast! But I have still been doing it, I see a bad back in my near future probably, haha.
Last week we were finally able to get some nurses on board, this time I have two nurses which has been a little confusing on who I have trained what on, but we are coming along and hopefully will be able to get a routine going again soon, yet now I'm missing taking Sol everywhere a little bit! No nurse on fridays right now so I guess that is mine and Sols day to go out and about.
Last week Sol got his motorized wheelchair dropped off for him to start trialing. I had a lot of problems with it at first, getting use to it all, but the more we work with it the better it has been getting. He loves driving it! It was going way too slow for him, though, so we had them come back and bump up the speed. He was pretty happy with the speed of it yesterday, and every day he has been asking to sit in his black chair. Although we aren't able to travel around with it yet since we don't have an accessible van, but he just has to learn how to control it right now anyway. We probably wont be getting our very own wheelchair for many more months yet. Maybe in time for school next fall.
Speaking of school, Sol is enrolled in summer school where he will actually go to the classroom. I don't know exactly what this will look like yet, we have yet to work everything out with it and apparently it is hard for me to come in to take him as a parent because of it being a special needs classroom and they just made a rule that no parents are allowed in those rooms to protect the privacy of all the families that have children in the special education program. Which, personally, I think is really odd... I just don't think parents that have kids with special needs, really tend to go around blabbing it to everyone?? I suppose maybe, but I always use it for extra resources! I don't know it is all really weird, and it has stopped Sol from being able to go to school the rest of this year because I would be the one to take him, so I guess the principle has to figure out something to make it work... Whatever, I'm not sure on all of that, I'm just kind of going with the flow on it.
But anyway... I guess that is the basics of the updates for now. I could go more in depth on some topics but a little short on time.
Until next time!
Last week we were finally able to get some nurses on board, this time I have two nurses which has been a little confusing on who I have trained what on, but we are coming along and hopefully will be able to get a routine going again soon, yet now I'm missing taking Sol everywhere a little bit! No nurse on fridays right now so I guess that is mine and Sols day to go out and about.
Last week Sol got his motorized wheelchair dropped off for him to start trialing. I had a lot of problems with it at first, getting use to it all, but the more we work with it the better it has been getting. He loves driving it! It was going way too slow for him, though, so we had them come back and bump up the speed. He was pretty happy with the speed of it yesterday, and every day he has been asking to sit in his black chair. Although we aren't able to travel around with it yet since we don't have an accessible van, but he just has to learn how to control it right now anyway. We probably wont be getting our very own wheelchair for many more months yet. Maybe in time for school next fall.
Speaking of school, Sol is enrolled in summer school where he will actually go to the classroom. I don't know exactly what this will look like yet, we have yet to work everything out with it and apparently it is hard for me to come in to take him as a parent because of it being a special needs classroom and they just made a rule that no parents are allowed in those rooms to protect the privacy of all the families that have children in the special education program. Which, personally, I think is really odd... I just don't think parents that have kids with special needs, really tend to go around blabbing it to everyone?? I suppose maybe, but I always use it for extra resources! I don't know it is all really weird, and it has stopped Sol from being able to go to school the rest of this year because I would be the one to take him, so I guess the principle has to figure out something to make it work... Whatever, I'm not sure on all of that, I'm just kind of going with the flow on it.
But anyway... I guess that is the basics of the updates for now. I could go more in depth on some topics but a little short on time.
Until next time!
Wednesday, March 6, 2019
Keep yourself alive... All you people, keep yourself alive.
I finally have some news that I haven't shared on Sols page or facebook yet! I thought I would say it first here, mostly because it could get too long for a facebook thing and also maybe not a thing I want everyone to know exactly right now. But my 2 dedicated fans that keep reading this blog, I can share with you. Haha. It is a little ironic because I was just listening to this Queen song, Keep yourself alive, and I felt it was kind of fitting for what I had to share.
Ok, I think almost a year ago, genetics ran some tests that looked for congenital myopathies. At this point we have done a whole exome sequence on Lua, they felt doing one for Sol would give no additional information so lets not waste it at this time. They have done an arthrogryposis genetics panel, neuromuscular panel, uhm and some other very typical obvious panels like the newborn screening tests and such and they have found some gene changes, that is when they strongly believed he had a plectin mutation, but after looking into it more they found the location of the change was in an intron and not an extron so therefore it could not be what caused his condition. I mostly write this stuff to remind myself as well because my memory is bad. Anyway, this last panel they ran they found a change in the Titin gene, which is super interesting because titin is the largest protein gene in our body so it would make sense that this could have caused his skeletal muscle mishap. Unfortunately the location of this change in this gene was more for dilated cardiomyopathy which sol does not have at this time but it did remind me that my mom has a type of cardiomyopathy. When genetics found out it was actually dilated cardiomyopathy they decided to run her genes and see if she has the same change that Sol has. Monday we got those results and she in fact does have the same change that sol has. Goody goody... Which means I have this gene because he had to get it from that line of genetics somewhere right.
Now what that means is I have a 50% chance of developing dilated cardiomyopathy and so does Sol, May will now be tested to see if she has the gene change as well or not. The option is to either get the change as a carrier or get it as the condition, because my mom actually has the condition that is why these are the options. My sister kind of explained it well, so we (me and my siblings) had 50% chance of getting the gene (one from mom one from dad) and now another 50% chance of either developing the condition or just carrying it around giving it to our kids so they can give it to theirs and so on and so forth. It is a little bumming. I suppose we always knew we were at risk of getting the condition, but for some time we thought my mom developed this from a virus. Which is still possible, because she had all those crazy sicknesses that we immunize for now, one of those fevers could have triggered this issue with her heart. But either way, now we wait to see if I develop symptoms and wait to see if sol will as well. Sol has always been at risk for this condition so he is already having all the care he would get already once they found this out, so we are ahead of the game at this time but long term we just don't know what this will cause. My mom didn't develop this until her 40s so hopefully by the time Sol is in his 40s they will have worked out a gene therapy to fix this gene or something, you just never know. Hopefully that could be figured out before I get in my 40s, ha, that would be nice.
Well anyway, that is where we are for our newest news... Oh but they also said they do not believe that this gene caused sol to have the condition he does have. It just isnt something that they have seen this change in this gene do and he would have needed 2 changes in the gene to cause his condition so he remains undiagnosed, for what seems like will just be forever the case.
Ok, I think almost a year ago, genetics ran some tests that looked for congenital myopathies. At this point we have done a whole exome sequence on Lua, they felt doing one for Sol would give no additional information so lets not waste it at this time. They have done an arthrogryposis genetics panel, neuromuscular panel, uhm and some other very typical obvious panels like the newborn screening tests and such and they have found some gene changes, that is when they strongly believed he had a plectin mutation, but after looking into it more they found the location of the change was in an intron and not an extron so therefore it could not be what caused his condition. I mostly write this stuff to remind myself as well because my memory is bad. Anyway, this last panel they ran they found a change in the Titin gene, which is super interesting because titin is the largest protein gene in our body so it would make sense that this could have caused his skeletal muscle mishap. Unfortunately the location of this change in this gene was more for dilated cardiomyopathy which sol does not have at this time but it did remind me that my mom has a type of cardiomyopathy. When genetics found out it was actually dilated cardiomyopathy they decided to run her genes and see if she has the same change that Sol has. Monday we got those results and she in fact does have the same change that sol has. Goody goody... Which means I have this gene because he had to get it from that line of genetics somewhere right.
Now what that means is I have a 50% chance of developing dilated cardiomyopathy and so does Sol, May will now be tested to see if she has the gene change as well or not. The option is to either get the change as a carrier or get it as the condition, because my mom actually has the condition that is why these are the options. My sister kind of explained it well, so we (me and my siblings) had 50% chance of getting the gene (one from mom one from dad) and now another 50% chance of either developing the condition or just carrying it around giving it to our kids so they can give it to theirs and so on and so forth. It is a little bumming. I suppose we always knew we were at risk of getting the condition, but for some time we thought my mom developed this from a virus. Which is still possible, because she had all those crazy sicknesses that we immunize for now, one of those fevers could have triggered this issue with her heart. But either way, now we wait to see if I develop symptoms and wait to see if sol will as well. Sol has always been at risk for this condition so he is already having all the care he would get already once they found this out, so we are ahead of the game at this time but long term we just don't know what this will cause. My mom didn't develop this until her 40s so hopefully by the time Sol is in his 40s they will have worked out a gene therapy to fix this gene or something, you just never know. Hopefully that could be figured out before I get in my 40s, ha, that would be nice.
Well anyway, that is where we are for our newest news... Oh but they also said they do not believe that this gene caused sol to have the condition he does have. It just isnt something that they have seen this change in this gene do and he would have needed 2 changes in the gene to cause his condition so he remains undiagnosed, for what seems like will just be forever the case.
Tuesday, February 19, 2019
the show must go on...
This morning I was thinking about this blog and how im a little disappointed that I don't post more. Truthfully though, I only can really post when I am at my computer to be able to type it out. I have tried a few times on my phone and the spelling mistakes and typos are just horrendous and it is also very difficult, then when I am at my computer I am suppose to be working on my very large tshirt orders that I have accumulating, so I just never seem to have time to write anything unless I am avoiding doing something.. haha.. Which today is not the case! I simply have a lot of vinyl that needs cutting so I am waiting for that to get done and have some time to kill.
Although I wish would 'blog' more is because I think it is a great thing to be able to look back at. Some posts are not very easy to go back to which I think is partly a reason why I don't actually come to this page very often because not many posts are very uplifting. Yet that is life, or at least my life, and to be honest most of the things I could be writing are word that definitely are not something that should be unleashed to the world wide web, that could be very scary! It is very hard to be honest "online" about the feelings you go through after you lose a child without offending, well the world. So in case there was wonder as to why there only tends to be posts around Lua's passing and her birthday, this is pretty much why. Difficulty and it not being very legal (or safe) to say the words that I am actually thinking. Hah. So now that I have wasted somebodies time reading all the useless stuff up above, let me think of some updates...
Well one I just thought about this morning, as well and the reason I thought about the blog, Lua would have been 5 next month. I can't even believe it, 5 years old. Seems like so long ago and yet the days of her seem like just yesterday. I can't even believe how big May! or Sol! are. My baby is 3 years old! Seriously don't blink.. time will fade away just like that. Speaking of a 3 year old..
I try to think of special updates that no one else will know, but since most everyone that reads these posts are on my facebook or sols page, you already know and it is kind of boring. I guess this can be an opportunity to give more thoughts on the issues though.. i guess.. Anyway the 3 year old.
Both my kids are enrolled in school now! Although Sold does his from home, that doesn't stop the fundraisers from coming for both kids to do, and all those other special stuff that comes home from the school. I am now swimming in paperwork all the time! But his school is going well! I still am so nervous to think of him actually going to the school. It worries me to think how easily it would be for someone to accidentally pull out his trach or maybe even gtube! I'm a pretty controlling person so the thought of him being at school with just our home nurse and me not being able to see what is happening is very scary for me! I am glad we have this opportunity to ease into it. He loves watching his class as of now though, and he has picked up on coloring with his anti gravity arm sling which has been so fun watching him do! He facetimes his class for about 15 to 20 mins 2x a week, so he watches their morning routines and then the kids are usually off for therapies or other out of classroom activities. One morning he was the helper and that was pretty sweet I wont lie! He got to say the weather and the day and the letter of the week and shape.. he liked the extra attention for sure.
One thing that I haven't told anyone else really, is we are starting the powered wheel chair process. It is going to be a very long process and I am not sure what all will have to change in our lives to have this option, or if they will even find a chair that will work for him at all. So I haven't said anything about that until we know more. We go Thursday to start looking at it. I know nothing can be easy so as exciting as this will be, I am fully prepared to hit road block after road block, because anything you actually need for your kids with medical needs are usually the things everyone else wants to deny you. That is why they have such awesome programs like go baby go or this special needs bike give away contest, or whatever else is out there. I literally don't even know where we will start with this chair option, I actually have a slight suspicion we are going to be told he either wont be able to use a powered chair at all or they will say he wont be able to operate any of them. So we will see what happens with that.
So school has been our big change, the powered wheel chair could possibly become a huge change for us, and everything else is kind of same ol same ol. And since my vinyl is finally done cutting, I suppose it is time to finish this up. But I am going to leave something at the end. It is a banana nut doughnut recipe. I really want it here so I dont lose it again. haha, but if you make it please let me know.
Although I wish would 'blog' more is because I think it is a great thing to be able to look back at. Some posts are not very easy to go back to which I think is partly a reason why I don't actually come to this page very often because not many posts are very uplifting. Yet that is life, or at least my life, and to be honest most of the things I could be writing are word that definitely are not something that should be unleashed to the world wide web, that could be very scary! It is very hard to be honest "online" about the feelings you go through after you lose a child without offending, well the world. So in case there was wonder as to why there only tends to be posts around Lua's passing and her birthday, this is pretty much why. Difficulty and it not being very legal (or safe) to say the words that I am actually thinking. Hah. So now that I have wasted somebodies time reading all the useless stuff up above, let me think of some updates...
Well one I just thought about this morning, as well and the reason I thought about the blog, Lua would have been 5 next month. I can't even believe it, 5 years old. Seems like so long ago and yet the days of her seem like just yesterday. I can't even believe how big May! or Sol! are. My baby is 3 years old! Seriously don't blink.. time will fade away just like that. Speaking of a 3 year old..
I try to think of special updates that no one else will know, but since most everyone that reads these posts are on my facebook or sols page, you already know and it is kind of boring. I guess this can be an opportunity to give more thoughts on the issues though.. i guess.. Anyway the 3 year old.
Both my kids are enrolled in school now! Although Sold does his from home, that doesn't stop the fundraisers from coming for both kids to do, and all those other special stuff that comes home from the school. I am now swimming in paperwork all the time! But his school is going well! I still am so nervous to think of him actually going to the school. It worries me to think how easily it would be for someone to accidentally pull out his trach or maybe even gtube! I'm a pretty controlling person so the thought of him being at school with just our home nurse and me not being able to see what is happening is very scary for me! I am glad we have this opportunity to ease into it. He loves watching his class as of now though, and he has picked up on coloring with his anti gravity arm sling which has been so fun watching him do! He facetimes his class for about 15 to 20 mins 2x a week, so he watches their morning routines and then the kids are usually off for therapies or other out of classroom activities. One morning he was the helper and that was pretty sweet I wont lie! He got to say the weather and the day and the letter of the week and shape.. he liked the extra attention for sure.
One thing that I haven't told anyone else really, is we are starting the powered wheel chair process. It is going to be a very long process and I am not sure what all will have to change in our lives to have this option, or if they will even find a chair that will work for him at all. So I haven't said anything about that until we know more. We go Thursday to start looking at it. I know nothing can be easy so as exciting as this will be, I am fully prepared to hit road block after road block, because anything you actually need for your kids with medical needs are usually the things everyone else wants to deny you. That is why they have such awesome programs like go baby go or this special needs bike give away contest, or whatever else is out there. I literally don't even know where we will start with this chair option, I actually have a slight suspicion we are going to be told he either wont be able to use a powered chair at all or they will say he wont be able to operate any of them. So we will see what happens with that.
So school has been our big change, the powered wheel chair could possibly become a huge change for us, and everything else is kind of same ol same ol. And since my vinyl is finally done cutting, I suppose it is time to finish this up. But I am going to leave something at the end. It is a banana nut doughnut recipe. I really want it here so I dont lose it again. haha, but if you make it please let me know.
just a note, I did doubled this recipe to get 18 doughnuts, other wise i think this would make about 9 donuts.
cooking spray
1 cup whole-wheat flour (or any flour)
1/2 teaspoon baking soda
1/4 teaspoon salt
2 tablespoons coconut oil (i used regular butter)
2 bananas
1/4 c maple syrup
1/4 c greek yogurt
1 egg lightly beaten
1 tsp vanilla
1/2 c walnuts, chopped
cooking spray
1 cup whole-wheat flour (or any flour)
1/2 teaspoon baking soda
1/4 teaspoon salt
2 tablespoons coconut oil (i used regular butter)
2 bananas
1/4 c maple syrup
1/4 c greek yogurt
1 egg lightly beaten
1 tsp vanilla
1/2 c walnuts, chopped
- preheat oven to 325 degrees. lightly coat a doughnut pan with cooking spray and set aside. These can be made in muffin pans or a bunt pan for one giant doughnut.
- In a large bowl, whisk together flour, baking soda, and salt. set aside
- In a medium bowl, combine coconut oil, bananas, maple syrup, yogurt, egg, and vanilla, and whisk until smooth.
- Add wet mixture to dry mixture, and stir until just combined.
- Pour batter into a resealable plastic bag (or a pastry bag). Cut off one corner of bag and squeeze batter into prepared doughnut pan, about 3/4s full. Top with walnut pieces, and lightly press them into batter.
- Bake for 14 to 16 minutes or until doughnuts are golden and spring back when touched. Removed from oven and cool in pan for a few minutes. then carefully turn out onto a wire rack and cool fully.
(baking time will vary depending on pan. **I had to bake mine at 350 for 14 minutes**)
Friday, November 9, 2018
get those arms moving
Over the summer we had a really amazing accomplishment, I think most everyone that reads this blog follows Sols page so everyone already saw what it was and that was him being able to (with arm support) bring a spoon to his mouth and feed himself. It seems like such a little thing, but when we first got our arm support device Sol was moving very little to almost not at all in it. It took weeks until he was able to build up the strength to get his arms making any movement at all. Now suddenly he is making larger and bigger movements, enough to be able to bring a spoon to his mouth. That is a huge accomplishment! It also encourages him to eat more as well, a win win!
We got our adaptive arm equipment from www.savorlifeadapted.com , another momma of a medical fragile child, they have such awesome ideas for their kiddo and gave me the idea to get this for Sol. The arm sling helps eliminate gravity by using the arm cuffs and a bungee cord. The cord gives nice extra movement compared to just using string or something that is stiff. So overtime, sort of like how sols legs started out, he has kept building and building the endurance he needs to get those arms moving! This last week we had therapy and we are in the middle of switching over to the school system therapy so we have a bunch of new therapists that need to learn all about Sol. At one session this week, we worked on popping bubbles by moving his hand into it. It really surprised me how hard he kept working to swing his arm into it to pop it, and he eventually got it! This is the baby that started out with no movement in his arm at all! Now when we are on the couch if you put his arm up, he will move it back and forth on his own. He is working at petting his dog, he uses his legs to help him bring his arms down, but it brings him a ton of joy to be able to pet his dog!
I have to admit, I didn't really know what to expect when all the AMC moms would say their kids find a way of doing things in their own way, I thought maybe it wasn't true at all, but given time and support it is true, these kids can figure out anything! Maybe that is why he is so stubborn ;)
Yay Sol!
Wednesday, September 12, 2018
jibber jabberings
Well, I have a lot of things to try to get done today (and in a short amount of time) so that means it must be a day to make a post!
I am still slightly trying to get over how fast summer went, I think we managed to do a lot but also not everything that I was hoping to squeeze in but that is okay, maybe next year. I am getting more excited for fall activities, which is actually huge because for the last 3 years I truly loathed fall, pumpkins, apple orchards, all fall things.
A month from today Lua will be gone for 4 years. Hence the reason why I have hated fall so much. I have thought about it the situation a lot over the years (ha obviously) and I feel like this year I am in some way accepting (??) of it. I don't know if that is exactly the word, and I can't say that it will stay the same as the year goes on either. But this is what I have been accepting, as I talk to myself daily about it.
Lua's death Was preventable, having Sol shows me that. She did not have to die because she got a cold. No way, not at all. Sol has now had 5/6 colds in his short 2 1/2 years. He just got over one this last week, I didn't even have to call one doctor about it because he got over it quicker than usual. When I think about Lua and her death, I know for a fact it could have been avoided. Doesn't seem like something you should be able to accept, probably, but what I also know is that being at the hospital that she was at, she was never given a chance to live. I have to stop blaming myself on not transferring her to Madison like I wanted to, because I didn't know. I didn't know that the two hospitals literally meant life or death. We are always told that the Childrens Hospitals are the best. I've never dealt with any medical issues in my life before this, I couldn't even tell if the treatment we were getting there was good or bad. Therefore, I have to accept that we didn't know, we didn't have the contacts we have now, or the knowledge, or the experience and none of that is our fault. How do you learn about something except through experience? Not the way you want to experiment something, by using your own children, but sometimes you are not given the choice I suppose.
It probably sounds terrible, I accept that she didn't have to die, and also that I didn't have the knowledge to know any better, but that is where I am at currently. So example, when I start to think of the situation, I start to get really upset at how avoidable her death was and that can really lead a person into spiraling down the rabbit hole, that is why I also have to remind myself and accept that our support system didn't help us at all when she got sick. I remember calling milwaukee and telling them she was dropping into the 50s for oxygen. Yes... 50s! We go to the hospital if sol is at 90. And they told me, "lets just keep watching her and see if she can get over it" I didn't know the other option if she couldn't get over it was death. I thought there was something in between like transferring her to the hospital!
I have now seen a handful of parents that have kids with neuromuscular disorders be treated the exact same way we were treated at milwaukee childrens. I tell them all the same thing, go to madision! I know one family, recently, fought for the right equipment, that madison gives in the nicu, for their child when they got sick and they were able to get it. But the crazy thing here is that I had to say they "Fought" for it. It should be given not asked for over and over again until they finally give up! Anyway, it just blows my mind.
This year I have also gotten a lot better with my insane amount of jealousy that I have for families that are whole, normal, typical families with healthy children. This is something that has been really hard to get over. Especially having a facebook account. Yes thank you everyone for shoving your happy perfect little families down all of our throats -- that is the crazy jealousy part I was talking about.
Most days now, I feel like I have accepted where we are at. It is a super hard life most days, but it has also become the only thing I have ever known! I haven't had a typical child in 7 years, I can't even imagine what that would be like. I couldn't change Sol now in fear of losing all of his silly, stubborn, naughty little personality. Sure he probably would be the same if a typical child anyway, and it will always be much harder this way, but it is the only way we know and I absolutely adore the child he is becoming. We are truly able to be so thankful for every day we get because we know we will never be promised another tomorrow, this is the life you live when you have a medically fragile child.
While this all still kinda seems depressing, this fall may feel like a more normal fall than we have had the past few years. I don't think we will feel great come the day that Lua actually passed away, but maybe this year it wont affect the whole season. I also can't ever see myself going back to the same pumpkin patch we were at the day before she died, but who knows maybe in time. The thing that hurts the most is when Lua's death is seen by everyone as not a big deal. Well it has been 4 years so everyone should really just be over it. Parents that lose a child at any age will never be over it, that is one thing I hope most people will understand.
I am still slightly trying to get over how fast summer went, I think we managed to do a lot but also not everything that I was hoping to squeeze in but that is okay, maybe next year. I am getting more excited for fall activities, which is actually huge because for the last 3 years I truly loathed fall, pumpkins, apple orchards, all fall things.
A month from today Lua will be gone for 4 years. Hence the reason why I have hated fall so much. I have thought about it the situation a lot over the years (ha obviously) and I feel like this year I am in some way accepting (??) of it. I don't know if that is exactly the word, and I can't say that it will stay the same as the year goes on either. But this is what I have been accepting, as I talk to myself daily about it.
Lua's death Was preventable, having Sol shows me that. She did not have to die because she got a cold. No way, not at all. Sol has now had 5/6 colds in his short 2 1/2 years. He just got over one this last week, I didn't even have to call one doctor about it because he got over it quicker than usual. When I think about Lua and her death, I know for a fact it could have been avoided. Doesn't seem like something you should be able to accept, probably, but what I also know is that being at the hospital that she was at, she was never given a chance to live. I have to stop blaming myself on not transferring her to Madison like I wanted to, because I didn't know. I didn't know that the two hospitals literally meant life or death. We are always told that the Childrens Hospitals are the best. I've never dealt with any medical issues in my life before this, I couldn't even tell if the treatment we were getting there was good or bad. Therefore, I have to accept that we didn't know, we didn't have the contacts we have now, or the knowledge, or the experience and none of that is our fault. How do you learn about something except through experience? Not the way you want to experiment something, by using your own children, but sometimes you are not given the choice I suppose.
It probably sounds terrible, I accept that she didn't have to die, and also that I didn't have the knowledge to know any better, but that is where I am at currently. So example, when I start to think of the situation, I start to get really upset at how avoidable her death was and that can really lead a person into spiraling down the rabbit hole, that is why I also have to remind myself and accept that our support system didn't help us at all when she got sick. I remember calling milwaukee and telling them she was dropping into the 50s for oxygen. Yes... 50s! We go to the hospital if sol is at 90. And they told me, "lets just keep watching her and see if she can get over it" I didn't know the other option if she couldn't get over it was death. I thought there was something in between like transferring her to the hospital!
I have now seen a handful of parents that have kids with neuromuscular disorders be treated the exact same way we were treated at milwaukee childrens. I tell them all the same thing, go to madision! I know one family, recently, fought for the right equipment, that madison gives in the nicu, for their child when they got sick and they were able to get it. But the crazy thing here is that I had to say they "Fought" for it. It should be given not asked for over and over again until they finally give up! Anyway, it just blows my mind.
This year I have also gotten a lot better with my insane amount of jealousy that I have for families that are whole, normal, typical families with healthy children. This is something that has been really hard to get over. Especially having a facebook account. Yes thank you everyone for shoving your happy perfect little families down all of our throats -- that is the crazy jealousy part I was talking about.
Most days now, I feel like I have accepted where we are at. It is a super hard life most days, but it has also become the only thing I have ever known! I haven't had a typical child in 7 years, I can't even imagine what that would be like. I couldn't change Sol now in fear of losing all of his silly, stubborn, naughty little personality. Sure he probably would be the same if a typical child anyway, and it will always be much harder this way, but it is the only way we know and I absolutely adore the child he is becoming. We are truly able to be so thankful for every day we get because we know we will never be promised another tomorrow, this is the life you live when you have a medically fragile child.
While this all still kinda seems depressing, this fall may feel like a more normal fall than we have had the past few years. I don't think we will feel great come the day that Lua actually passed away, but maybe this year it wont affect the whole season. I also can't ever see myself going back to the same pumpkin patch we were at the day before she died, but who knows maybe in time. The thing that hurts the most is when Lua's death is seen by everyone as not a big deal. Well it has been 4 years so everyone should really just be over it. Parents that lose a child at any age will never be over it, that is one thing I hope most people will understand.
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