When we first had Lua, we spent a lot of time trying to figure out what caused the condition, what is the condition, how will the condition manifest, but we never found any answers with her. For Sol, I pretty much have stopped worrying about it and just try to work our hardest and hope for the best. His legs have always been his strongest muscles, his arms and hands have always moves the least. We get use to it of course, I remember a lot of parents of kids with AMC always say their kids find a way to do things on their own in unique ways. That holds true for Sol as well, so we just do our best with what we have.
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 ;)
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.
Since passing his swallow study, we have been taking advantage of summer by making sure to eat all the yummy stuff we can that this season has! Of course that means ice cream! probably one of sols absolute favorites. Followed by yogurt, drinkable yogurt, and more yogurt. He recently decided he isn't a fan of textures and learned he could spit things out when he didn't like them, so that has been fun and our new trial that we have been trying to work on. We want to some day eat most of our meals by mouth! But for Sol, that will take some time to work up to and get strong enough to do. It is nice, though, we can now go to restaurants and he can also eat some things with us! That has been pretty awesome for us!
In June we also went to a Timber Rattlers baseball game and got to meet Daniel Tiger!!! Sol was pretty much blown away, with a little confusion as to why he was so big and also not talking or singing, but he still cried when we would walk away from the big Dainel Tiger.
We also did our first family movie day at the theater to see Incredibles 2! Sol was pretty tired by the time we went to watch it so he didn't stay entertained the whole time, but we made it through and that is what counts!
May has been going to practices since June for our community arts theater play that they are doing. She is an orphan in the sequel to Annie. This has been keeping us pretty busy! Especially as of late since now they are doing practices every day until opening show. It is a pretty cute play with some really good actors in it! I can't wait to see the finished project.
We spent a few weeks with the cousins this summer! My oldest nephew visited us here, and our chicks ;), and a couple weeks later my younger nephew, May and I went with Grandma to go strawberry picking. The kids were rewarded with some play time at the aquatic center. They must have gone down the water slide at least 40 times! May really loved spending time with her cousins!
Later in the month of June, we had a play date with one of Sols nicu buddies! We went to a playground that was a little more handicap accessible and it was sooo sweet and cute to see these two boys together! It was Hot, Hot, HOT though, so it wasn't super exciting for them, haha, but maybe next time we will go to a splash park or something. Sol has been loving water this year, he Loves the sprinkler sooo much. He could play in that all day, and he is getting a pretty nice tan going on!
Speaking of play dates, last weekend we met a family that I had started talking to online shortly after Lua was born. Their kiddo is the same age as Lua, but a couple months older. I still can't believe we were able to meet them! It was such an honor. Their little boy is doing so wonderful and is so amazing, and as sweet as I expected he would be! This also felt like something we can cross off Lua's bucket list. I always wanted our kids to meet and even though she wasn't here to meet them, I'm glad we could still do it, and if it wasn't for her I would have never even know this amazing family. I find it interesting that Lua can still find little ways into our lives still, even if she has been gone for 3 years.
A little over a week ago, May finally learned to ride her big bike with out training wheels. It all came together one day for her and then she was off and has been cruising ever since! She even did a 3 mile bike ride with us last week!! We are so impressed that we figured it was time for a family bike ride outing, and we got a trailer hitch for my bike for Sol to ride in. He likes it quite a bit! We can put his little adaptive chair in it and it keeps him pretty comfy and safe. Now if only it would cool down just a tad so we can bike outside a little longer. It gets pretty hot in that trailer after awhile.
Well, the rest of our summer looks like it will be lots of play practices, biking, sprinklers, and of course playing with the chickens which are now huge! Cannot forget about our chicks! ;)
I have many deadlines to hit this week, and so much other things to do, not to mention the two new chicks in our house to take care of, So... today must be a day where I stop doing all of that and take 10 mins out of my day and write a blog. To think just this morning I was complaining to May that she is always avoiding doing things that she doesn't like to do, I wonder where she got that from!
There is way too much to get caught up on since March, but briefly putting it, Sol get RSV towards the end of the month into April, (second time this year), we even broke our no hospital streak of 16 months I think? and had an overnight stay with this last spout of RSV. It was terribly disappointing especially because we had scheduled a swallow study the next week and I knew he wouldn't be up for it by the time it came. During his RSV sickness, we ended up getting like, 28.5" or something ridiculous like that, of SNOW in APRIL. This sucked because Sol was still struggling with his oxygen and I literally could not get out of our driveway. Besides missing the Go baby Go event, Sol at least didn't need to go back to the hospital and recovered well by the time the roads were clear.
Shortly after that, he developed what would be an ear infection if he wouldn't have gotten his tubes but in, but nevertheless, he was really uncomfortable and ended up needing some drops to help his ear get better.
Not but a week after that, he got a sinus cold and that seemed to take FOREVER to get over. We spent so many nights on the couch with him, and he spent so many nights coughing and coughing and coughing, and of course they do nothing for coughs so we all had to suffer through this. By the time he was starting to get a little better from this sinus cold, he developed a trach infection and then stopped sleeping all together because he was in so much pain. I was ready to rip my eyes out, I was so tired, not to mention of course I got the sinus cold because I wasn't sleeping. Anyway, I gave a quick call to his doctor and got him some antibiotics and it was in a couple days that he was doing So much better. But while all of this was going on, I had to reschedule the swallow study about 3 times. It was insane!
Yesterday, though, we finally went to that swallow study. I was pretty nervous I thought for sure I wouldn't be able to sleep that night just because he never got back to where he was with eating before he got RSV. The last couple of times that we tried feeding him at home, he wasn't really into taking any of it so I had a suspicion that he may not participate at the swallow study.
We got there and got him all set up, his speech therapist from home was there, he was very confused by all of this but we sat him in the chair anyway. They did some explaining of how the test would go, I got to feed him (I had him pick what color bowl he wanted that morning and that really made him excited to see that same bowl when we got there) But I was getting so anxious and wanting to just get on with it before he freaked out. Finally we were able to start, I couldn't watch the video because I was feeding him, but Everyone was cheering for him. He was eating like a champ! He had purees and honey thickness and nectar thickness and he did the same thing with all of them, which means he can keep practicing eating all of those types of textures. He did 'penetrate' two times, they explained so the food started to go towards the airway but with his next swallow it went right where it was suppose to go. So we do have to be careful feeding him, but we were only giving him food by mouth one time a day and only applesauce and in a very controlled environment. Because he didn't aspirate at all during the study, we can now feed him every day but still small amounts and we still need to be pretty careful, but the fact that he has reach this goal that we have set for him, and he set for himself really, it is just amazing! So very exciting. The drive home all I could think about was what food I would make for him next to eat! Basically anything can be blended down in my vitamix, so the possibilities are endless! He had almond chocolate milk this morning, and it is just so fun seeing how excited he gets with being able to explore food more now.
It was a pretty great day! The rest of the week has been pretty hectic but at least we had yesterday!
March ties with October for being the worst months of the year. At least the first half of the month is just terrible. In the beginning of the month of March, each day it seems like I wake up with this lump in my throat where I could burst into tears and become an emotional mess at any second. This year I have been pushing it back and pushing it back, keeping busy and trying to ignore this week that is ahead.
Four years, my biggest memories from four years ago are being very pregnant and just finishing up with my uncles benefit. For me, those two events go hand in hand together. In fact, I think my uncle messaged me the day I went into labor with Lua, we were joking about how it was time to set the eviction date for the baby. No one could have ever been able to guess what ended up happening. There was no sign anywhere that our baby would have any complications. Our first baby was a horse, as healthy as could be, why on earth would anything be wrong with our second child? I guess because that is how genetics work? Some times conditions pop up that have been possible to happen for generations but people before us lucked out, generation after generation. Then finally, it happens, and the mutated gene that has been being passed down and passed down finally shows its ugly face to the very unfortunate family who gets it.
I can go on to say but we were so blessed, we Were fortunate, we were the lucky ones, all to be able just to meet Her. All those things are true, but it doesn't take away how much it hurts to watch your baby struggle with everything in life and then pass away. I'm not a strong person because I handled all of it, take care of her, and the rest of our family, and try to live this normal life. No, that doesn't make me strong, that is me being forced into doing what I had to do because I wasn't given a choice. I don't know what that is considered, but that isn't being strong. I mention this because everyone always tries to give you the bright side when things are horribly bad, and sometimes there isn't a bright side to a situation, sometimes the situation just sucks. I believe it is human nature (to quote daniel tiger) to try to turn things around and find something good, but this situation was just crappy for everyone involved, and it hurts when people say we have been so strong. I didn't want this and I don't want to be strong.
Every year I think I will be able to handle her birthday better than the last, but then the week arrives and I am just as bitter and sad and mad/angry and anxious and hurt as the day she was born. I'm starting to think, maybe that just doesn't happen, maybe it isn't possible to take the day your beautiful daughter, that passed away, was born, and see it as a time to celebrate. Maybe I'm wrong, maybe many years down the road I won't have all these feelings, because I can admit, I do know the benefits that came from Lua. I would never deny that her birth was meaningless, that I regret it and wish it would have never happened. I know the beauty that came from it, but the loss hurts so bad I have to work very hard to keep the beauty part of it ahead of all the bad.
I know today what she accomplished in her short life, she lived and died to give her brother a great life. With out Lua, we would have never known the path we needed to take for Sol. If Lua was here, most likely there wouldn't be a Sol. I think that is why it is so appropriate for them to be named moon and sun. What is the moon with out the sun? What is the sun with out the moon? They needed each other even if it wasn't in this life together at the same time. Lua passed away at 7 months from a cold, from inflammation to the lungs, because she was not getting the air way clearance she needed and she wasn't getting the proper ventilation support. Sol is now 26 months, triple the age Lua was when she passed. Every time Sol is sick or something seems off, we think of Lua and we remember, we aren't doctors and if we are in doubt, he needs to be seen. It is horrible that we had to learn the way we did, but this is what she has given us. We don't know Sol's future, much like we don't know our own, but it is because of the struggles we had with Lua, we found the correct doctors for Sol and he has not made it to just his 1st birthday, but also his 2nd which in a condition like theirs, is a great accomplishment.
I also know May's great accomplishment in life already too, and that was loving Lua more than any sibling could love another. May was the best sister to Lua the world will ever see. I mean that too, I know it is easy to say that, oh so and so loves their brother/sister the most! But, she loved Lua literally to the moon and back. Even to this day. At times I envy May, she has the most genuine memories of Lua. She remembers all the good times and that she was her sister and she was SO happy to have a sister. She does remember mom and dad crying a lot but other than that, she doesn't remember that last morning, she doesn't remember seeing Lua's body lifeless, she remembers her smile and her eyes and that she got to play barbies with her, and for a short time she had the sister she always dreamed of having. I overheard May telling some friends that came over one day about the picture frame in her room that holds one of Lua's outfits. She explained to them that it was her sisters, but she died when she was a baby and it was just the most honest thing, and she could do it as though it was something common that happens. Life through a child's eyes I suppose.
None of this came with out consequences though. May does remember good things about Lua, but she struggles with anxiety frequently, maybe she would have regardless but it probably is a little worse than what it could have been. Also having Sol, and her being older and understanding more, she is more aware how fragile his life is and will frequently ask if he will die. We have all been opened up to a new world that is out there that you will never really understand or see unless you yourself are living with a child who is medically fragile. We hear about kiddos passing away a lot, and it is always so heartbreaking because I know how those parents hearts are feeling and I ache for them as they have to go on this new journey that can be so isolating. We keep moving forward, though, because we have to. Which is why, days like Lua's birthday or the day she died are so difficult. Time seems to stand still on these days, these days where intentionally or even unintentionally give the what if's. What would life be like right now if this didn't happen four years ago? How would she be? How would she look? Would she have had those terrible three's like her sister? Would she like Daniel tiger as much as her brother? As soon as those questions come into my head I try not to even indulge them and push them out as soon as they come because I can't even bare them anymore. I went from having to see her pictures and videos every single day, to not even being able to go on my downstairs computer because I know that is where all her pictures are and for some reason this new part of grief that I am in, I can't handle seeing her pictures.
She deserves her day to be recognized, though, I gave birth to her, she was here, she lived, she fought to live, she conquered things doctors said she would never do, she definitely taught us, me, a lot. My only wish... is that it wouldn't be so painful.
I'm pretty bad at going back and reading previous posts, sometimes they annoy me so much I can't imagine anyone wanting to read these things 😃, but I did briefly go through the post on Sol's neuromuscular clinic, and that reminded me...
Shortly before Christmas I got a call from genetics about the testing they did on Sol's plec gene. When we originally did this test that found changes in the plec gene, it was through a research based program so we didn't have to pay an arm and a leg for it. It was also done on Lua, so now with Sol, and that he is still with us, we were able to clinically test the plec gene and what they found was that the change in the plec gene was actually in the intron part of the DNA not the extron. There was a lot of explaining going on, but basically if I understood right, they aren't sure what the introns part in genetic conditions are so when they do studies like this they dont count the intron as being the cause, only if it is on the extron. What that means is, they came to the conclusion that the plec gene IS NOT the cause.
Now if you read the past posts, we were excited that at the muscle clinic they strongly believed it was the plec gene, and they had two doctors currently working on the plec gene, which meant possible gene therapies....... So nevermind all of that.... now we are back to square one. The condition my kiddos have remains undiagnosed. This even comes after they did another genetic test looking at neuromuscular conditions. Those results came back not too long ago and they did find a change on two genes that could be responsible, but there was only one change on each of those genes, one was Titin gene, the other I can't remember off hand but either way they don't really believe that either of those are the cause. I remember the titin because what that showed was dilated cardio myopathy which if this is true, he may have heart issues later on but thankfully we are already watching his heart and he will have a full work up on his heart later this month. That doesn't explain the rest of his condition though.
It is so very frustrating, with out a reason for the condition, a cure or help is just that much further away. Currently we are going to try to enroll in a program that works with people who can't be found a diagnosis, if we get chosen for that then a scientist would work with Sol in hopes of finding what gene was changed. It will be a long process, I have no expectations of finding out what he has anymore. I thought we were really going to be able to figure it out, but there are too many unknowns. Too many genes they haven't learned enough about, and not to mention part of me still thinks there may have been an environmental factor at play with Lua and Sol, although the geneticists don't really think that is possible but they aren't saying it was impossible either. By environmental I don't mean like smoking or drinking or some other type of ingested abuse or what not, but the place we were living at the time when Lua and Sol were both conceived. What we do know, is it is a type of myopathy and we will continue to treat it as such. We don't know any thing long term, just go day by day and hope for the best!
