I've made the switch to the iPhone... The doctors were having a hard time hearing me so I needed to update my phone and finally decided to go with the iPhone after resisting all these years. But now I don't know why I resisted. It is amazing to use a phone that actually opens up apps! Compared to my windows phone that was pretty outdated and nothing really supported it. Oh well. Anyway..
This week my heart was shattered again hearing about the sweetest little boy who passed away. Little Logan, if you are on my Facebook you have seen some things about him. He had such the sweetest little soul, if I could meet anyone in the world it would be him. He is one of those babies that makes you feel blessed just to know his name. Amazing baby. He has had one thing after another thrown at him since he was born, yet he took it all with a huge smile on his face. This little boy was sure loved too. He radiated love in all his pictures, just the most precious thing ever. My heart hurts so much for his mommy and daddy, they poured their lives into him and gave him so much. I remember after losing lua how blah life became. There is so much that goes into having a special needs child, it becomes hard to know what to do with yourself when they are gone. It is eerie to not have all the machines. It is extra dark with out their equipment shining at night. It is lonely, and it just overall hurts. Now this precious family has to take all of this in. It is hard. Genetics suck. It is so hard to comprehend that one tiny little gene change can cause all of these crazy issues to happen to our babies.
I look at sol and how much he has improved since birth, yet he is still no where near being able to move like a normal baby. I still wonder what happened that could cause this much damage to him, I'll always wonder that, but I know it doesn't matter. What matters is to keep moving forward and enjoy every day, every moment, because some day maybe there won't be another day. I know that all too well and seeing what this family went through and seeing another baby lose his life, is a huge reminder.
Tonight I think we will light some lanterns and send them off in memory of Logan, lua, and all those gone too soon. Wishing for a day where babies don't have to be affected by such diseases.
Friday, August 19, 2016
Wednesday, August 10, 2016
just living
This morning when I woke up I was thinking how badly I wish Sol could be hitting milestones every other baby his age are hitting. It hurts a lot reading those updates on how old your child is and what they should be doing and knowing your baby is far behind on those things. For a moment I thought to myself, man I wish he was normal.
This seems obvious right? Everyone wishes the same thing, that he was a normal baby, of course I wished he didn't have this medical condition as I have said many times, but I don't think I ever stopped and thought those exact words, I wish he was 'normal'. I almost instantly regretted it. No one is 100% normal, even those who think they are, what is normal right? We still work towards milestones every day, we are just very far behind. Although, almost as soon as I thought that we had an incident that made me realize I don't wish he was normal, what I wish is that i didn't have to worry about him passing away at any second. Being normal makes it seem a lot less likely that a child will pass away even if that isn't a promise, it is easier. Sol having the condition he has means he wont live as long as those normal people. I know I've said this before but just reminding.
Sol had a rough night, something has been bothering him so he slept in this morning for a change. After he woke up I brought him to the living room to start our day. Summer school is going on this week so Sol and I get a little cuddle time in the mornings before the nurse gets in and im off getting things done. But Sol had different plans this morning. As I was changing his diaper he started crying really hard for a few seconds, after that his heart rate dropped to 90, which isn't very normal of him, but his lips turned a blue color. He recovered in seconds but I instantly worried if he was going to stay recovered or go down hill from this. I called my husband to come home and Sol seemed to be doing better, I did end up bagging him just to see if that would help the color come back along with suctioning and doing some coughs on him. He was fine until Thiago got home and pretty shortly after he walked in the door he did another little episode, a hard cry, dip in heart rate, blueish lips. Seconds he recovered again but what was going on?! We called the doctors and also had a visit already scheduled with his family doctor anyway. After telling madison what happened they seemed to believe he had a plug in his trach and wanted us to change out the trach and what not to see if that helped. I'm really doubtful it was a plug in the trach, it seems like something else was going on. Regardless, we made the changes they recommended, but he didn't have any more episodes the rest of today so far, even before any changes were made. He has still been throwing up, so his family doctor wonders if he was retching during this episode and that is what caused everything. Who knows, but we ended up doing an xray just to rule out lung issues, and the xray came back looking good.
As quickly as I wished for normal, I wish for just living. I really don't like having days like today to remind me to just be happy with what we have because I know any day things could change and most likely it won't be for the better.
This seems obvious right? Everyone wishes the same thing, that he was a normal baby, of course I wished he didn't have this medical condition as I have said many times, but I don't think I ever stopped and thought those exact words, I wish he was 'normal'. I almost instantly regretted it. No one is 100% normal, even those who think they are, what is normal right? We still work towards milestones every day, we are just very far behind. Although, almost as soon as I thought that we had an incident that made me realize I don't wish he was normal, what I wish is that i didn't have to worry about him passing away at any second. Being normal makes it seem a lot less likely that a child will pass away even if that isn't a promise, it is easier. Sol having the condition he has means he wont live as long as those normal people. I know I've said this before but just reminding.
Sol had a rough night, something has been bothering him so he slept in this morning for a change. After he woke up I brought him to the living room to start our day. Summer school is going on this week so Sol and I get a little cuddle time in the mornings before the nurse gets in and im off getting things done. But Sol had different plans this morning. As I was changing his diaper he started crying really hard for a few seconds, after that his heart rate dropped to 90, which isn't very normal of him, but his lips turned a blue color. He recovered in seconds but I instantly worried if he was going to stay recovered or go down hill from this. I called my husband to come home and Sol seemed to be doing better, I did end up bagging him just to see if that would help the color come back along with suctioning and doing some coughs on him. He was fine until Thiago got home and pretty shortly after he walked in the door he did another little episode, a hard cry, dip in heart rate, blueish lips. Seconds he recovered again but what was going on?! We called the doctors and also had a visit already scheduled with his family doctor anyway. After telling madison what happened they seemed to believe he had a plug in his trach and wanted us to change out the trach and what not to see if that helped. I'm really doubtful it was a plug in the trach, it seems like something else was going on. Regardless, we made the changes they recommended, but he didn't have any more episodes the rest of today so far, even before any changes were made. He has still been throwing up, so his family doctor wonders if he was retching during this episode and that is what caused everything. Who knows, but we ended up doing an xray just to rule out lung issues, and the xray came back looking good.
As quickly as I wished for normal, I wish for just living. I really don't like having days like today to remind me to just be happy with what we have because I know any day things could change and most likely it won't be for the better.
Sunday, August 7, 2016
stomach flu
Sol has been sick with a stomach bug for a week today... Uhhh I wish so badly he would be over this now. We can't move him too much because he throws up easily right now. The poor guy gets stuck laying around a lot now because of how quickly he throws up. A week. A full week he has been throwing up and not able to be moved too much, it is hard to watch. We can't work on anything and we can hardly hold him, so very very hard. He went on a continuous feed at the hospital and we have continued doing that. At some points he acts like he is feeling so good and then just as quickly, he gets so sick. I really thought he would be doing better by now but it really hasn't happened yet. Everyone keeps saying it will just take him long because of his condition and being a baby, it is just hard to see him be sick for so long.
Sometimes I can't believe there are people out there that dont have to worry about slight colds or stomach bugs could take their childs life. I don't even remember how it was to live like that knowing the smallest thing wouldn't take my child from me. Or the fact that most parents go about their days never thinking their baby wont live to see age 5, 10, or 20... It literally blows my mind. I know we have that with may, but then again knowing what we know now and losing lua, I know we have no guarantees that any of us will make it to tomorrow, but some people live in such innocent bliss that nothing bad could ever happen to their child or themselves. I wish I had that feeling. I wish I didn't have to fear that I may have to plan another funeral for my child for the second time, and in reality I know someday I will. Dwelling on that fact can drive me crazy with anxiety and depression so I try not to think about it, but when he gets sick it is hard for me to ignore. I know he is a strong little mister, but I also know how weak he can be because of his condition so I know how fast things could turn on us. So many people at the hospital asked us how we were doing at home and I never went onto detail, we are doing so that's good enough. I'd hate to say good and tomorrow have him stop breathing, so for everyone's sake I just tell people we are doing. I want to be doing great. I want to be able to say that. I want to be able to watch sol try to crawl and babble so bad. I wish I could just inject him with all of my muscle, he wouldn't even need all of it just enough to hold his head , walk and breathe well enough. It gets so frustrating, as most of you can tell. And sick days take a toll on me. It becomes many days of being worried and lack of sleep and still trying to keep things normal for may. So much. I follow some babies who have progressive diseases so the parents are aware each day is a gift, and it really blows my mind how so few parents actually live like this. I just can't get over it sometimes. Oh well.
It was good to see the hospital crew again, we were able to get sols stroller and order a neck collar for him to help him hold his head up on his own. That could take just a few weeks to get, as long as sol has stopped throwing up by then... I dont know we will see I suppose.
most parents wouldn't get excited about a neck collar so their child could finally hold their head up on their own.....oh the joys.
Sometimes I can't believe there are people out there that dont have to worry about slight colds or stomach bugs could take their childs life. I don't even remember how it was to live like that knowing the smallest thing wouldn't take my child from me. Or the fact that most parents go about their days never thinking their baby wont live to see age 5, 10, or 20... It literally blows my mind. I know we have that with may, but then again knowing what we know now and losing lua, I know we have no guarantees that any of us will make it to tomorrow, but some people live in such innocent bliss that nothing bad could ever happen to their child or themselves. I wish I had that feeling. I wish I didn't have to fear that I may have to plan another funeral for my child for the second time, and in reality I know someday I will. Dwelling on that fact can drive me crazy with anxiety and depression so I try not to think about it, but when he gets sick it is hard for me to ignore. I know he is a strong little mister, but I also know how weak he can be because of his condition so I know how fast things could turn on us. So many people at the hospital asked us how we were doing at home and I never went onto detail, we are doing so that's good enough. I'd hate to say good and tomorrow have him stop breathing, so for everyone's sake I just tell people we are doing. I want to be doing great. I want to be able to say that. I want to be able to watch sol try to crawl and babble so bad. I wish I could just inject him with all of my muscle, he wouldn't even need all of it just enough to hold his head , walk and breathe well enough. It gets so frustrating, as most of you can tell. And sick days take a toll on me. It becomes many days of being worried and lack of sleep and still trying to keep things normal for may. So much. I follow some babies who have progressive diseases so the parents are aware each day is a gift, and it really blows my mind how so few parents actually live like this. I just can't get over it sometimes. Oh well.
It was good to see the hospital crew again, we were able to get sols stroller and order a neck collar for him to help him hold his head up on his own. That could take just a few weeks to get, as long as sol has stopped throwing up by then... I dont know we will see I suppose.
most parents wouldn't get excited about a neck collar so their child could finally hold their head up on their own.....oh the joys.
Thursday, August 4, 2016
5 year old
Today May is 5 years old!!! It is unbelievable how fast time goes and that she can already be 5!! It is super depressing.. Do all parents feel like this as their kids age? I guess another reason to not have anymore kids! Having her was a completely different experience than lua and sol, obviously. She made me a mom and every day she is still teaching me how to be a mom. I can't even express how badly I wish i could have had the same experiences with lua and sol that I did with may. We had challenges but watching this little baby grow and learn the way she has, has been amazing. I miss her baby days soooooo much. I know I wrote before about how seeing other babies and families with babies bum me out, but really looking back at Mays baby pictures and videos, make me the most depressed. How much fun we had with May as a baby was a great selling point in having another child even though we were really on the fence about it. I miss those days. But have to look forward and not at the past I suppose and hope for another amazing 5+ years with her.
We are currently still in the hospital with sol and his stomach bug and may is at the grandparents house. I had planned to take her to the mall and do play and shopping today, but plans change :( I'm really sad I'm not with her right now to give her a great day, but she will probably have more fun with grandma anyway. We have a party planned on Saturday for miss may, and I'm hoping so badly we will still be able to do it. I hope we will be able to get out of here today, but who knows what will happen.
happy birthday may! My first baby! I love you my little 5 year old!
We are currently still in the hospital with sol and his stomach bug and may is at the grandparents house. I had planned to take her to the mall and do play and shopping today, but plans change :( I'm really sad I'm not with her right now to give her a great day, but she will probably have more fun with grandma anyway. We have a party planned on Saturday for miss may, and I'm hoping so badly we will still be able to do it. I hope we will be able to get out of here today, but who knows what will happen.
happy birthday may! My first baby! I love you my little 5 year old!
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