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.
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