2022

 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! 

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!

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!
  

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! 

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. 

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.

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 

1. 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. 
   
2. In a large bowl, whisk together flour, baking soda, and salt. set aside  
3.  In a medium bowl, combine coconut oil, bananas, maple syrup, yogurt, egg, and vanilla, and whisk until smooth. 
4.  Add wet mixture to dry mixture, and stir until just combined. 
5. 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. 
6. 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**)

get those arms moving

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 ;) 

Yay Sol!

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. 

Summer.

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! ;) 

To do list.

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! 

Lua's 4th Birthday

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. 

2018 genetics updates

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! 

Santa is coming to town

Or well rather we went to Santa...
Last night we made a spontaneous trip to see the celebration of lights, which happens about 40 mins away from us. We went the first time when we first moved to this area, I was very pregnant with Sol, and neither of us can remember how we knew about this but I think it was one of those deals where we just stumbled upon it, even if everyone else in the area knows about it. Anyway, the last three years we have gone to it. It is nice because you can drive through the park and see the light display, I think you can walk it but most drive it, which works perfectly for our family! Then in the middle they have a building set up where you can see Santa. The first year we went, we probably waited in line for a good 20 to 30 mins, mostly Outside, in the cold, in december. It was awful. May did enjoy it though, because that year they had the deer out back that we could look at while we waited. Last year, Sol was just recovering from being sick when we went, and there was no way we were going to wait in line with him for that long in the cold. This year, we went on a night that wasnt free so luckily we didn't have to wait! So we were able to do that famous picture of the baby crying while being held by Santa... It is the little things that happen that help you feel like you are doing the whole normal family thing.  This picture is my favorite! 

This picture reminds me of a similar picture his sister took at his age, or well I suppose she was a little younger than him. But I love it! 

Sometimes it seems silly to want those typical moments with our family, we aren't a typical family so it shouldn't be something I have the need to dwell on, it is unfortunately, but many times we never really do get those typical moments anyways, so when we do find ourselves stumbling upon them it gets pretty exciting!
This year has definitely been a better year than it was last year. Sol is getting a little easier to do things with and he is getting stronger, which makes everything better. Sometimes it hurts to see how well Sol is doing. That confirms what I thought with Lua, if she were to have gone to madison she would be doing just as well as Sol. I try to quickly get out of that mind set, although, because I know it still doesnt take much to send Sol to the hospital or maybe make it so he isn't even able to make it to a hospital. I am just so grateful for this year and all of his accomplishments and his hard work. He is one determined, feisty, opinionated, little dude and I love it. I never thought he would take so much after his sisters! Especially that oldest one there!   

Neuromuscular clinic 2017

Last year was our first year at this neuromuscular clinic which includes Many many many doctors, that we get to see all out of one room. They come to us and we get to just hang out in a clinic room. It is perfect for us so we don't have to keep going to Madison over and over, and also because then we don't need to pack everything up and run to a different doctor through the day. Last year's clinic was really great, gave us a lot of ideas and updates as to where Sol is at and we got new doctors in the picture at last years clinic. This year also did not disappoint us! It tends to be a very long day, with waking up at 5 am, (after going to sleep at 3 am because Sol decided to not sleep the night prior >.<) and then not getting home until after 6pm. Whew, but it was worth it this year.

We are starting to have a really solid understanding as to what Sols (and Lua's) genetic condition is/was, which is great because we know better how to treat it. There are still a lot of unknowns, technically speaking, Sol, well technically technically Lua, is the first to be seen with this type of mutation creating this type of condition. Lucky Us! Other kids that have been seen with similar mutations in this gene have a much less severe type of the condition, meaning, many of these kids have gone on to walk, didn't require a trach, had more movement, but still they believe what we saw in our kids is the same thing that has happened it just happened to be worse, probably simply because of how the specific mutation in each of mine and my husbands genes came together.

Yes, it is annoying and unfair and crappy... but as one person has put it, we are the best at making the worst condition, hahaha so true!

Anyway, to not distract from above... Now his condition has been labeled at limb girdle muscular dystrophy 2q, genetics, neurology, they both disagree with this diagnosis because he is showing improvements. I keep getting bothered by people calling it a dystrophy just because that means they (doctors) will consider him as declining, and if the wrong doctor at the wrong time gets their hands on him and believe he is only going to get worse instead of better, that could cause problems in his care. I talked with his neurologist about my reasoning and she completely agreed. We talked about how he has been the last year and all his improvements, and to her, she has no reason to expect him to decline, at this point. She is really excited to see his development and what he will end up doing, so she decided to take the limb girdle diagnosis off of his chart and give him his correct condition name on all his charts. I just loved what she wrote up for our after summary report

To any random person, this may not seem like anything special to read, but the fact that she puts, "he will continue to gain milestones over time..." Wow, that just gets me! I think back to when I was pregnant with him and how he was going to be impossible to intubate, and possibly pass away at birth, now here we are at the point of expecting him to only continue to do well. It just seems so amazing.
Before we left the clinic, our neurologist came back and wanted to talk with us. She already found two doctors in different countries, that are working on getting trials for the plec gene! This means, maybe some day, there is a possible gene therapy that could fix his plectin gene and fix the skeletal muscle that is broken. I now have two contacts that I can reach out to and even if they don't get trials out for years, they may be able to give us even more information on the plec gene and anything else we may be able to try to help strengthen him. It was just so amazing that this possible opportunity has opened up. Last year, the same neuro doctor told us she would see it being impossible that anyone would ever work on the plectin gene because it is so rare, she did go on to admit she said the same thing about SMA(Spinal muscular atrophy) and now there is a drug to treat that. With in a year we went from nothing being possible for years to come, to this year where he is expected to continue to reach milestones (sol milestones) and a possible gene therapy in the future.

Everything else from that clinic, could not top what we talked about with the neurology doctor. No way no how. Most of the things we talked about I can't even remember because I'm still on a high from all the good news we got from neurology. Besides all the news about his diagnosis, which let me shout out about how amazing our neuro doctor is - she really has put in the work for us to figure out this diagnosis and it is doctors like this that we need on our team, she's amazing! I also asked her the million dollar question (that everyone asks)

is it possible for him to get the trach out...? 

Before I give her answer, I find it important to point out that at this point we do Not want the trach out. Yes it is annoying to have a suction machine, yes people get bothered by watching us suction him, but right now it is life saving. It helps us prevent from getting pneumonia all the time, and helps us to stay out from being admitted to the hospital every other week, so right now, No we do not want the trach out no matter how annoying it may seem to be.

She answered with, it definitely isnt off the table. He will show us what he can do, and with how far he has come with the speaking valve, she cant say that he will have it forever. So looking forward maybe some day he wont need the trach, but if he does, he does. I just really like hearing someone say maybe some day it wont be necessary, that is enough to hear.

So besides all of that, all the doctors are really thrilled with his progress, they seem him as getting stronger, smarter, and we heard many times during the day how excited they were to see what he will be doing next. His communication therapist thinks he will be a computer programmer when he grows up (since when we had his eye gaze computer he kept changing the settings on me) But that is the first time I heard anyone talk about his future that far out!

There has been so much to take in after that appointment and I wish all his doctor appointments would go as good as that one! We had a cranial facial clinic a week before this that was really not as nice as this one was. It has been a long journey, and I know it doesn't stop here with all these good reports, there will be hard times because that's life and right now we need to make sure he has exceptional pulmonary team because his current pulmonary doctor that has gotten us this far, just retired. If we don't get good support from them, that will make it hard for Sol to continue to improve. Therefore I am being cautiously optimistic and making sure we are getting the best care pulmonary wise, other wise we will have to be in search of a pulmonary doctor that will support him the way he needs to be supported. Lots of stuff floating around in my head all the time, but it feels great to remember over and over how excited most of the doctors are about him. Sure makes my heart feel good!

In just a couple of weeks we will be celebrating Sols second birthday, with a birthday party to build a bear with a couple of kiddos. I'm crossing my fingers that no one gets sick before this and we can all be healthy and rested for Sol to be able to really enjoy his day. I'm hoping for a very fun day for him because he truly deserves it. He has worked so very hard these last two years, I am so thankful that he has too <3 

in september.

I hate being the debbie downer of the blog world, but wow how september is such a difficult month!
Sometimes there is this thing that goes off that reminds me I feel very terrible. It usually takes me awhile to figure out why that is? Usually it takes looking at a calendar. For some reason, there are certain days or weeks and months, that set off depressed feelings and the end of september is one of the hardest times with the most depressed feelings. Lua got sick after a birthday party we took her to, it wouldn't have mattered if she did go or didnt because May was the one who initially got sick and passed it on so Lua would have gotten sick regardless. But it was at the end of September and then after not fully recovering, October she passed away with out us ever expecting this could happen.

Remember that feeling where you think nothing bad can actually really ever happen to you?
Only takes one time for that feeling to fade away fast! So we actually aren't invincible???

Well last year Sol got sick at the exact same time Lua did. Want to see what a freaked out person looks like?? I probably have some pictures. We were admitted with Sol around the same time that Lua got sick last year. So of course, this year I am pretty freaked out. Although Sol has been showing how tough he is at these sicknesses he has calmed me some. Except, I know how easy it is for him to not be able to fight a cold with out proper support and if anything goes wrong he could easily pass away, I will never make that mistake again to think it is actually hard for someone to die from a cold because it is possible especially if you start adding other factors to the equation. Well, we all ended up with this sinus cold this last week and Sol is still working on trying to get over his. It started out fine but now he is getting congested and when it gets to his lungs it is usually difficult to deal with, so I am still being hopeful that he will bounce back any day here. If he doesn't, I think I will lose my mind, I just cant take this time of year anymore! Last year was really difficult from september to january, I felt like we were admitted every month, and we basically were. If it is possible for us to not get sick and much as we did last year that would really be a big help!

So with all of this and all of my "Ahhhhnessss" (because I have no other words to describe?) I am at my check up this last month and find that I certainly qualify for anxiety medication. I know so hard to believe that I could possibly have anxiety! Where did that come from? Ha, I laugh to not cry :D It just becomes interesting to me what the outcome is of going through traumatic things. Daily our family can battle hard memories, we all go through it so differently too, and it is interesting to see how things that happen to us shape us and mold us into different versions of ourselves. I truly am not going anywhere with any of this so feel free to stop reading at any time, but september is such a sucky time of year i feel it deserved to have my thoughts written down about it. Ha.

Sol gives me hope though. And if he does well the rest of this month, maybe by next year it wont be as hard. He does have a procedure coming up october 6th and if that doesnt go well then october will be DEAD to me. I will never acknowledge october ever again, we will seriously be through. Just a warning october.
He does though. I Love seeing who this little man is becoming. Today he kept trying to kick off his pulse ox prob and then he chuckles about it. Boys are so naughty, even when they have such little movement they find ways to be naught. It is truly the best, and some what refreshing from dealing with all the emotions a girl gives you lol! We recently went to a genetic appointment and in that appointment, something I have not told on my facebook page for sol, or many other people, The neuromuscular doctor has found a drug that could potentially help Sol gain some strength. We will put him on it for a month and see what happens, she said if it is going to work we will see it happen right away. I am not starting this until after his procedure though, so not until october will we try it, but this is something i have been wanting, anything that could even possibly maybe help or maybe not do anything, but it makes me feel like we are trying SOMETHING, you know how hard it is to watch your child be in a body he really wasn't meant to be in? This feels like a little piece of hope and if not this, maybe some day there will be something. Each day I watch him, ready to jump like his sister, or walk like is cousin, or play like the neighbors and each day it breaks me a little more that he wants this and cant do it. It is a hard thing, but he is creative, between the two of us, we find ways to get things done so that is why I say he does give me hope. He is of course my rainbow baby and he is living up to the name every day. Him and his sisters makes me one proud mommy!



 

nicu awareness month

Wow, I did not realize that I have not written an update since spring break! I knew I havent been in the mood to do so for awhile, but have not realized it has been so long. I was driving to the store today when I started to think about how this month is nicu awareness month, something I haven't typically done much for, but reading some updates from parents that are currently in the nicu with their little ones, got me thinking about our time at the nicu and how traumatic it can be to be in the nicu. I wish I could let everyone see a glimpse of my memories from the nicu, so that people can truly grasp what it is like to have your baby in a nicu. Since I cant, I can only share a few thoughts that will stay with me forever. In honor of nicu awareness.

As many know, we spent time in two (technically 3) different nicus, and I have to say that they were quite different experiences for us. The nicu stay with Sol was easier and less traumatic, for. The. Most. Part. Two incidents made for some traumatic memories, but actually his admissions when he gets sick scares me more than anything that happened in the nicu with him. One thing that made his time in the nicu less painful (we will say) is that we knew what to expect. I knew I needed to be louder and more opinionated this time. His room was also much nicer, bigger, and quieter. So when i think back about Sol being in the nicu, i have so very few sour moments. I miss some things he had while he was there, and now I get to see the silver lining which is getting to have a toddler that didnt just break out of the nicu at 3 months, but has thrived and gotten stronger and grew into this 20 month old that he is. (Saying dada and lala and sooometimes momma) When I think back about our time with Sol there, the hardest parts of our stay was me pumping 20 hours a day! Being up all night and day pumping away. Ok maybe not 20 hours a Day but it sure felt like it. Also, of course staying in a place that isnt your home can be so uncomfortable, along with not being able to see your other child and your husband 4 days out of the week. Those things were so very hard. But every day when I would go in to see Sol, he would be his relaxed self ready to chill with me. I would get many good reports from doctors about him. Everyone loved him! I heard such few negative things while we were there, which was so helpful because i hate getting bad news by myself.

That last part I believe, no bad news with sol, is what made all the difference between Sol and Luas stay in the nicu. When I think back to our stay with Lua, i have such few good memories. We had amazing nurses that i wish so badly we could have also had with Sol, we had a select few great doctors! But there was too much unknown. I mean, Lua was just a ball full of unknown where very few people thought she would survive for very long. Sometimes I still cant believe that the doctor that delivered her (dr sutton) was able to keep her going until help arrived. I truly did not understand what was happening after she was born. Just image, you are pregnant with your second child with what seemed to be a completely normal pregnancy, you go into labor on your own, after many hours your baby is born and then a second after your baby is born, the doctor takes her away and quickly the room starts to fill with people, you cant see anything, cant see your baby, no one will tell you what is going on, oh and you still have to deliver your placenta yet. At one point i believed she was going to die there on the table, but then help arrives and they get her stable and I asked a nurse if she was ok. The nurse says almost nothing just a very small I dont know.
Anyway moving forward...

When we were sent to the childrens nicu, we were under the impression we were going there to have her contractures fixed. Imagine our surprise when we were finally allowed in by Lua we had a team of 8(?) doctors standing around her telling us she is going to die. Utter shock. This is my first memory that goes through my head every time i think about lua being in the nicu. A bunch of doctors, which that alone is tremendously intimidating, standing around our baby telling us she is going to die.  They didnt think she would live to 6 months, they probably didn't expect her to leave the nicu in reality. Now, besides that moment... numerous people would come in many days in a row to tell us how severe, weak, and a lot of work lua would be. This is our baby! Our newborn baby and we were expected to just give up on her immediately. This is what I get to remember whenever I think of Lua being a newborn. Never any good news about her. Multiple times being asked if we rather her just let her go. I can't even justify using the word traumatic, there should be a stronger word, but yes so very traumatic. Not to mention all the other things that make staying at a nicu hard, living away from home, having a 2 1/2 year old at the time and trying to balance both being in the nicu and taking care of her. Yes, Lua's nicu stay was much hard than Sols. This brand new world we entered and we had no idea this would ever become our life.

But, both our babies made it out of the nicu. Many times parents don't get to leave the nicu with their babies. Even if we did lose Lua 4 months later, we were able to take her home. What i would give to have had the knowledge we have with Sol with Lua. I know for a fact she would still be here if we knew the things we know now.

I wish i had some amazing words for any new parent in the nicu, but I don't believe there are any such words. No matter how short or long a nicu stay is, you always have the grief of the loss of that perfect  birth, leaving the hospital with your baby, or whatever it was that you pictured would happen after you have this sweet baby you longed for. The loss of that is definitely fair to grieve over, but it is certainly worth it to make it through each day and be able to take your baby home. That is the best moment, best feeling ever.

spring break.

I started this during mays spring break but didnt get very far, like the only thing i had down was .... spring break. I'm going to leave it as spring break though. I didn't write anything because i felt myself getting very depressed and only wanting to talk about the bad things. I have spent weeks trying to pull out of this little dark spell and im starting to feel better in some aspects of life. Others not so much but at least the 'other' issues are things I assume everyone goes through.

Well spring break for us was very fun... except not. I started out our week before spring break with strep throat. Causing us to miss our big genetics and neuro clinic. We cant get back into that until September so i am so seriously disappointed with myself that i had to get sick that day. The next day i spent recovering, and then it didnt take long to spread to my husband. At that point i called the doctors and asked for all ov us to get antibiotics. We had so many appointments coming up i was trying to get us to at keastba few of them. On top of appointments, i felt so deathly i couldnt imagine what would happen if sol caught it too. Our family doctor did inform me that it was rare for kids under 2 to ger strep so that made me feel a bit better. Nevertheless, towards the end of the week three out of four of us were on antibiotics with sol being the only one safe. That was until the week of spring break when he woke up super suctionie. I spent the whole day doing a ton of breathing treatments on him and coughs galore. I dont think he had strep but they aren't positive, we did end up doing antibiotics with him too just in case. I spent that night, after getting up at 4am, doing his air way clearance treatments until 1 am becuse this sickness had the secretions going right to his lungs and i was trying my hardest to avoid being admitted to the hospital. At 1 we did the switch and at 6 i was back at it on clearing his secretions. He was able to stay out of the hospital, but it took a long time for him to start to recover, i was starting to have my doubts! By the end of that week, instarted feeling miserable again. One night while i was suctioning sol and checking to make sure his lungs were cleared, I felt as if strep was coming back! By morning i couldnt talk. Called the hospital and they were very doubtful that i had strep again, but i was feeling so bad i had to go in. Sure enough, strep again. 20 days of antibiotics! And now at the end of those I started to have a skin reaction, so it has been a blast lately!

Now on the mend, we have had appointments to make up for, extra work days to put in, and sols typical nurse left for maternity leave the end of the week of misery. It has been an interesting week to say the least. Sol had his swallow study this last week and it was very interesting, he failed, but it qas interesting. They decided to do baby food by spoon and not a bottle which we had been practicing on, and he did attempt to swallow the food right away and the first swallow went down but the remainging stuff he silently aspirated. So he cannot do anything by mouth as of now ans we will do a repeat study in 3/6 months or so. We know what to work on now ans hope we can get him there. It would be wonderful to get him to eat a few bites by mouth! 

Well thats a lot to update on for now and it is taking me weeks to do so thats that. 

Also most of this was written on my phone. Forgive the errors ill have to fix when i see a computer again.