then and now.

Sol has been doing well lately. He has really been making me so proud, and our hard days are not necessarily about him and his health lately. He is continuing to practice his head control, he is loving kicking on his gym, moving his fingers a little more, and yesterday he was rotating his wrists. His movements and strength is very small, but compared to none, it is huge. His breathing has been doing okay, I did suction out some blood yesterday night and I have no clue why, maybe he got too dry during the day or I don't know why. The last few days he has been making many attempts to swallow and I can certainly tell a difference since I am down to suctioning a couple times an hour compared to many times an hour. We decided to add outpatient speech therapy to our list of doctor appointments. We only had an evaluation last week but our plan is to go twice a week and we will see what happens.
There is something difficult about how well Sol does. The better he gets, the more guilt I have. The more I believe that if we would have taken the same steps with Lua, she would still be here and doing just as well as he is. I am so happy how well he is doing but it is proof that our previous hospital failed us. I believe that we are the parents to ultimately it is our responsibility and we are at fault, BUT, we are not doctors and until Lua we never knew anything about muscle conditions, how were we to know? It was only after many struggles with Lua did I look into what other help was out there. I was afraid to initially switch hospitals though. I kept telling myself that we would check out Madison as soon as things cooled down. She then got sick and thinking after she got better we would look at another hospital. I actually heard of a pulmonary doctor in New Jersey and I contacted him and we discussed a plan for Lua. Thiago and I decided that we would use the money from Lua's benefit and go to New Jersey and see this doctor. That was just a few days before she passed away. We wanted to go when she got better of course, but it was too late by then.
This is the problem with our medical system. From our point of view the hospital we were at with Lua was too proud to tell us up front that they don't know much about this condition and we should seek help from another facility, another doctor, another hospital if we wanted to provide a longer life for her. Maybe they don't see it that way, maybe they think they did do everything they could for us, but regardless if they will admit to this or not, their beliefs are not for quantity of life but quality. Which is why when a baby with SMA is born the hospital will say take them home and love them because they will pass away shortly. The reason they will pass away shortly is because this hospital doesn't want to prolong a life they believe is not worth living. This is the difference between the doctors we had then and the doctor we have now. She believes kids with SMA can have a happy prolong life. She believes in the parents and their wishes. In the end it is up to us to decide what we want for our children. I understand completely parents who do decide to take the route of giving the best life they can to their children but not prolonging it. I get it, there are many, many things to take into consideration for a parent to get to this point, and I truly get it. I also get why parents want as many years as they can get. It IS the parents choice, not the hospitals. Give us information on each decision and let  us decide.
I wish very badly that this is something the milwaukee childrens would change. Their style is old style. We talked to our current doctor a lot about this, we know that they have all the information that Madison has but they are choosing not to use it. Why? Is it because they think babies like ours aren't worth it to fight for? We were told many times with Lua how much work she would be. Oh it is going to be so much work, she is going to need so much care, do you understand how much work it will be... Allllll the time I heard this. I got so tired, so so so exhausted from hearing this. You know what... I never heard this at madison. I never had a time I went into the NICU and they told me all the bad things that could happen. I actually had doctors say how they were so impressed with him and how they love how much he was changing and improving. He made all the doctors in Madison very proud. It was Crazy!!

Well I had to stop writing this after awhile and now I can't get back into my train of thought so I suppose I will have to end this. My point to it all is milwaukee needs to change at least for the parents who want the change. 

apple tree.

Our awesome neighbor had some tree guys over, arborists I guess is the right term, and they happened to have some apple trees on discount. We got one and they planted it for us and also replanted our other tree in the yard. I love trees, a lot, so this is exciting. Not only will this tree be able to grow with Sol, but it was planted one day after our niece was born! The very next day I drug the kids out there to get their pictures taken with the tree. Sol hated this, but I was really proud of May, she held Sol all by herself! Some adults can't do this! She is a great big sister!

On another note...

Some day I would like to write a letter to parents who live in wisconsin and find out their child has a neuromuscular disease, and all the bits of information that we have found on our journey. I know some people have done this, but I believe every person's journey is different and it never hurts to get more information on situations. I think that will require me to have a long time to sit down and really think things through so it is written well and full of all the information we have learned, so that may be coming up, it isn't today, but coming. 

On another another note... (copied from his facebook page

https://www.facebook.com/groups/1579362122354190/permalink/1614047012219034/?comment_id=1614062268884175&notif_t=group_comment&notif_id=1465521088722709  )

Sol had his well child check up today. He is now 15lbs 13oz and in the 25% on weight! This the kid they told me would never hit the charts on his weight gain. His height has always been measured from head to rump so they cant get an exact on his length, but for consistently measuring that way he has grown 2 more inches (thats just head to rump!) He is looking good, he does have a butt rash that has been going on for awhile, we found out he cant tolerate the type of cream we have been using :( He also has a little ouchie on his ear that we got looked at. Everything else is going well with his overall health. He did get shots, along with his big sister and they are now both pretty tuckered out. 
Tomorrow we head to madison for another doctor appointment. He is scheduled to have his trach up-sized, we will see what happens.
Another big day of traveling for him, I am hoping it will go well. I am also hoping the up-sizing the trach will be a good thing. If he didn't need the trach for a long term time frame, he wouldn't need to be upsized, so the fact he is getting a bigger one means trach for many more years. But it also, hopefully means, he will be able to move air better and need less suctioning. All we can do is go day by day.

Some days have been very hard and bleak, especially when we started to have to deal with his swallowing difficulties. The last few days, although, have been good. We started the summer with a bang. My niece was born on the 2nd and May and I got to see her before she was 24 hours old! Then Sol got to meet her a few days later! May has been having friends over, and yesterday we went to the zoo with one of her friends. It was a great day for everyone and it was a ton of fun! I am appreciative to have a nurse so we can do these few things. I really wish there wasn't a need for Sol to have a nurse every day, but at least we are going forward. The best thing is how strong Sol is getting. Recently he has been sticking out his tongue a lot, his legs are kicking like crazy and he LOVES to be on his gym. Every day we are doing it now just because he loves it so much. His neck is getting stronger, he also moved his pinkie this last week, and he has been making noise over his trach too. It really gives me hope for all the things that could possibly come. I hope he is able to pick an apple from our apple tree some day! 

the hammock.

Babies with arthrogryposis multiplex congenita develop this due to the lack of movement in utero. There are many reasons why there is the lack of movement, if it be that the muscle didn't form which leads to no movement, some cases there isn't enough fluid for baby to move, I've read that sometimes the cord can cause contractures as well. Each child has a different reason as to why they didn't move. We know our babies didn't move because they lack skeletal muscle to give them the strength to move. As they get/got bigger they can take the muscle they have to work with and make that as strong as they can and work with what they have. I never saw any movement from Lua's core, trunk area. I was told at the hospital that it seemed she lacked all muscle in her back, so I was never sure if she would or wouldn't ever move her trunk area. I tried to work with her on that, but it is hard to try to activate those muscles in that area and notice movement from a weak baby. The most we did to work with her was sitting up, sitting up against pillows, or holding her in sitting up position and she did well with all of that. We did tub time where she could move her little body, but because of the trach we never filled the water up too much to protect her from water coming in. I had plans to take her to an aquatic center which would have been easier to hold her in and what not, but we never made it there. So I was never aware of any progress that we made with her core. Sol was pretty much the same. I never saw movement from his trunk, I'm not sure how much muscle he has there, we are continuously told by the speech therapist that he wont get better at his swallowing unless his core gets stronger. I was trying to think of what we could do so he could try to activate his core. He doesn't tolerate sitting up well unless I am holding him up. He aspirates too much saliva to get a good work out from sitting up assisted with pillows and what not. His swing as too much support to actually have him activate those muscles in my opinion. The tub is the same with Lua, we can't fill it enough to really help him be free in that area and it be safe. I was trying to figure out what we could do so he could lay free and feel his whole body move but also be contained in something that was somewhat supportive. The hammock came to mind. I thought about this for awhile and it sounded like a good idea. So I took a blanket and tied to two chairs and safely held him in there. It swings, he feels all of it, he LOVED it. I went on amazon and bought a baby hammock. 

Best. Buy. Ever. 

It is exactly what I was looking for. When we got the hammock and put him in there, the first few seconds I saw his trunk area do a little shimmy, shake, shake. He loves it. He smiles, He swings. He is free yet supported and I think this will help activate the rest of his body that we can't quite activate for him. I highly, Highly, recommend a baby hammock for any kiddo that has weak trunk area. I actually recommend a baby hammock for any baby! They are awesome, it is kind of like a sling that you would use to wear a baby but you lay it out and let the baby swing by themselves. I am so happy I thought of this idea. He has gone in it a little each day. The first few times he was in it, he was so happy and he didn't require a ton of suctioning, his oxygen level was 100% and his heart rate was 120s, which is lower than his normal of 140s. He was just so content and relaxed in it. If nothing else it is a great thing to let the babies relax on.

Recently Sol has also started to bob holding his head up. He can some what support his head if we sit holding him upright and balance his head. The longest he has held up his head is about a minute. Small amount, small start, but great progress!!! I just keep thinking where he will be in 5 months from now. Hard to say, as long as he continues to improve that is my ultimate goal. He has been feeling pretty well lately too. This weekend we went to see his new baby cousin! And he had a great day. Very little suctioning required, he did great on the car drive, there and back. He had just the best day we have had in a very long time! It has taken us all week to recover from that, but thats okay. We have another trip we are going to make, to madision, on friday and hopefully he does just as well for that trip. I am so proud of him and all the strides he is making. He is one tough little man.

He has also been working on his little gym and his leg movements are going wild! Another thing he absolutely loves! When we had Lua, I strapped balls to her legs to let her move, and she could move like crazy doing that, and she loved it! I didn't see this type of gym, that is actually for SMA kiddos, until we were at the hospital in Madison. This is another must have for kiddos with low muscle tone, contractures, and that are weak. It really helps them to feel free.

There are so many tricks out there to help babies like ours get movement in, and the great thing about all of these things is the fact that the more they work at it, the stronger they potentially can get. The stronger they get, better quality of life they can have. It is one of the things I enjoy through all of this, trying to find new, unique ways to get them to move like we do. I just love to want him and see how happy he gets getting in his hammock, or how much he enjoys kicking his legs around. He gives the biggest smiles. It really is the best feeling in the world. Someone told me once, or I read somewhere, that is the thing about having kids that are different able, it means so much more when they hit mile stones, it is a much bigger deal when they accomplish a new task or experience a new thing. I almost cried when I felt Sol take his head away from my hand and hold his head up on his own.
Those are the moments you live for.

new world

I have known this for awhile, but I think I am finally being able to accept that I live in a different world than most people do. I experience things some people will never ever experience, and they wouldn't want to either. It is one thing to live in a world where you are apart of a group who has had a special needs baby, I could go on to be specific and say an AMC baby. But then we joined the group of those who have lost a child. Then we joined the group where we had a special needs baby, lost a child, and had another special needs baby. If you look at that percentage wise, including the death of our daughter, that is a smaller number of people who live and experience those types of things. I know others are out there, but it is slimmer than just having a special needs child or just having a child that passed away. For some reason, today, I looked at it and said "Yep, I live in a different world than most people. Some days I'm okay with that, other days are terribly lonely, but today I feel okay with it. I can't even describe how hard it is for me to see facebook posts of perfect little families, or pictures of women who are pregnant and will have perfect little babies, that can be hard, that can be very very hard. I know I have said all of this before, but it is one of the main things I struggle with, the jealously of what seems to be other peoples perfect lives and how come I wasn't blessed to get that. I try extremely hard to push those feelings aside because I know they don't help anyone, but they are there none the less and I'd be lying if I said everything was perfect.
This holiday was a little depressing, for example. Seeing everyone going out and being on a lake or going camping, or going to the park or a parade, we can't do any of that right now. We tried to go to the furniture store in plover, a 30min drive, and it was misery! Suctioning and suctioning and so stressful, at this moment we are living in a very difficult world. We can't do things as a whole family like everyone else can. I can't take my baby with me wherever I go, we can't do vacations easily, and it is depressing. I think we still ended up having an okay weekend though. Our neighbor came over one day and had dinner with us and brought us an amazing dessert. She visited for awhile and even folded my laundry for me. The next day we spent some good outside time, all of us, the first time we all did that as a family and that did feel pretty good.
 I read something the other day, although, that made me feel a little less bad about Sol's condition. When I was reading some information about congenital myopathies, it said, kids with myopathies don't hit milestones as fast as normal. That sounds depressing right? When I read that though I thought, do they ever hit milestones??? Will he Ever hit any milestones? For sure not like normal babies. But there is a reason it is worded like that, because babies with these conditions CAN hit milestones and yes it may take Years, but hitting them none the less is progress. That makes me think if we work hard enough he could hit those mile stonessome day maybe. We still don't know how much muscle he has, so what type of milestones he will reach I won't know until they are here. I'd rather read they reach milestones later than typical babies than read they wont hit them at all, even if he doesn't ever hit them because saying it that way gives me hope.

My fear at this point will always be, what if/when will I lose him. How will I possibly be able to ever live in that new world, being the person who has lost 2 kids. I know it isn't for sure he will pass away, I know though because of his condition his life span is shorter than most. Again, I feel like I am writing the same things over and over, but these are the words that run through my head daily.

Ok enough of that lame complaining stuff... Some updates.

We have nursing, I went with the nurse that wanted more hours and it is working out well. Today I had that moment that made me feel so glad I do have nursing. I got to take May to school. I got to chat a little with her friends instead of rushing out as soon as possible to get back to Sol, and I was able to go to the cafe and have some coffee with Thiago. It felt great to get out on this super nice day! And know that Sol was fine. He has actually just recently, like this week, almost fully recovered from being sick. Yeah a cold that I had for a month, kept him really down for what felt like a month and a half. Plus I think we had teething happening here as well. When this all took place Sol stopped swallowing and became crazy with the amount of suctioning, and still is, but today has been just a tad better and we have been hearing him swallowing, so maybe he is getting back on track now.
He has recently been starting to coo while on the vent. He does this almost every night now! And we can hear him cry now as well instead of just going by heart rate! Which is nice, I can hear him cry before the alarm and can get to him sooner. It is also just the best thing in the world to hear your baby! He has also started making a little noise even while being off the vent, they are small sounds but it is a great start! Birth to three has been coming out for about a month now, and I think that is going well. We are working on more things we can do with his mouth to get him to get into that swallowing more and also working on his feet and legs before we end up doing any casting and surgery. Friday we go to madison for another follow up appointment.. I think this is the first week since we've been home that I didn't call them for anything, so they are probably wondering whats going on with us.. haha, well we will see how that goes.

I wish I could write better, deeper, or a way that is more understandable? But I get interrupted frequently and then I get out of the mood to finish what I am writing which is why it is hard to update often. Oh well, any update is better than none :)