A lot has happened this past month. Lucy was hospitalized this last week due to her feeding issues. The appointments she had scheduled for a g tube were just too far away. So, we were able to get Lucy hospitalized to bypass that process. She needed the surgery very badly, and I decided enough was enough. I'm her advocate, and I needed to help her as soon as possible. She hasn't gained any weight for months. 16lbs is where she has stayed at since Fall. Feeding her was very hard for me. Took me hours each day and she would be coughing and sometimes barfing during the process. I can't risk her getting a big case of pneumonia because of that. So, we had all sorts of testing done while we were there. During her swallow study, the therapist was great. She didn't just scratch her head and say well I don't know what to say, some have done that. She came right out and said she was too high risk and shouldn't eat food orally unless her development changes. I loved that she just told me, because I knew she was right. Lucy triggers the swallow reflex when it about gets to her esophagus. She catches it barely in time. I think that since that was the case, she probably has gotten a little bit into her lungs at times. The therapist said she has dysphagia since she doesn't have a good swallow reflex. We were able to get Lucy the g tube surgery since everyone that looked at her knew she needed it. She had surgery on Monday, we were at the hospital for 8 days...
So, during this stay we had it was a little crazy. When we first got there we had a double room. I was hoping that we wouldn't have to share with anyone. Well, we did and it was an abusive situation. The 8 month old baby was abused and I heard all about it. I didn't leave Lucy because the father was present in the room. The father was the one that broke his legs and bruised up the baby. I heard way too much information and I told a Nurse or anyone that was with me when I got a chance to leave the room for tests with Lucy. Well, we got moved rooms in the end. I heard the mother bawling after the last social worker visit she had. I don't think the child was able to come home with the parents. I hope the poor baby stays away from that low life father. We were moved to a nice private room, I'm pretty sure we had stayed in that room before actually. Poor Lucy had to be poked so many times during this stay. To make sure her electrolytes were ok. I guess once you feed more nutrition levels can go weird. So, you just have to keep an eye on it. An awesome addition to the hospital is the new Ronald McDonald room. It just barely opened and it's for parents to eat free and relax. In fact if anyone would like to come for an activity such as young women's or relief society, come over and make a dinner for families. They don't have anyone on the calendar since it's so brand new. You can bring in the ingredients and prepare a meal that feeds 50 people. It's such a nice facility, and a great atmosphere. You can also donate food to the main Ronald McDonalad house in Salt Lake that goes to familes as well. I think this is an awesome thing to contribute to. It helps us save a little bit of money where we can when we have our children hospitalized.
I was able to attend the sacrament meeting last sunday that Primary's has. It only lasts 30 minutes, so that is awesome haha. It's hard not to cry when you are there. Knowing the people that surround you are hurting and struggling. A women sang "I am a child of God", and it was very beautiful. So many of us began crying as the song was sung. Afterwards there were complimentary blankets to take home that the ward had made. A little patch work was on the corner, I will post a picture. Reading what it said made me emotional.
Seeing children in the halls with monitors and IV polls is very humbling. I saw children and teenagers come in and play in the new forever young zone to get away from the reason why they are there. They had a tree where you can make a wish and stick it on there. I made one for Lucy, I wished for her to be healthy and strong. I really enjoyed reading the wish that a little girl could be in an Irish Dance competition. Seeing the sweet girl in her wheel chair in the cafeteria wearing a princess crown. I told her she was a very pretty princess. She lit up, and I knew it made her day. These sweet children that suffer so much, are all so beautiful. And they should all know how great they are everyday.
Truth be told I suffer, I really suffer some days. The last couple of months have been rough on me. Some days you go by doing well, and then others it feels like someone threw bricks at your face. I don't want to go in every detail of what makes it hard right now. I just have bad days is all. I think I've come to the end of my rope with questions. I know people care, I know people mean well. But, if you got the question everyday asking if your child will ever be normal all the time... Wouldn't that hurt you? Guess what, my child will not grow up like other healthy children. She won't and that is how it is. If you wonder why, I have wondered the same thing. I don't have the answers, we have no other children to base her off of. And with all children that have genetic issues, they don't all manifest the same outcomes. They are unique and write their on story. You know I have one answer for you, and this I am sure of. She has a perfect spirit, can't that be enough of an answer for you? She does as well as she can do with her physical limitations. If you had seizures and low muscle tone wouldn't you be in the same state she is in. If you see this, then why ask? I don't care about some questions. I really am fine with it. It's the questions that aren't tactful that really hurt. Will my child ever do anything you consider normal? I have no idea. If you want to ask God, go for it. I've been asking him that same question. I have a beautiful child that is as sweet as they come. I love her, and whatever happens happens. All that matters is that she is loved, I will punch kick or fight someone to protect this sweetie. I had to do that with a doctor recently, yes you saw the post. He came in at the hospital and apologized. He had no idea what he had said, I told him. It was super awkward, but he apologized.
I'm going to try and upload some pictures, hope they work! Thanks for reading and understanding, thanks for the love and support you have given!
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So, during this stay we had it was a little crazy. When we first got there we had a double room. I was hoping that we wouldn't have to share with anyone. Well, we did and it was an abusive situation. The 8 month old baby was abused and I heard all about it. I didn't leave Lucy because the father was present in the room. The father was the one that broke his legs and bruised up the baby. I heard way too much information and I told a Nurse or anyone that was with me when I got a chance to leave the room for tests with Lucy. Well, we got moved rooms in the end. I heard the mother bawling after the last social worker visit she had. I don't think the child was able to come home with the parents. I hope the poor baby stays away from that low life father. We were moved to a nice private room, I'm pretty sure we had stayed in that room before actually. Poor Lucy had to be poked so many times during this stay. To make sure her electrolytes were ok. I guess once you feed more nutrition levels can go weird. So, you just have to keep an eye on it. An awesome addition to the hospital is the new Ronald McDonald room. It just barely opened and it's for parents to eat free and relax. In fact if anyone would like to come for an activity such as young women's or relief society, come over and make a dinner for families. They don't have anyone on the calendar since it's so brand new. You can bring in the ingredients and prepare a meal that feeds 50 people. It's such a nice facility, and a great atmosphere. You can also donate food to the main Ronald McDonalad house in Salt Lake that goes to familes as well. I think this is an awesome thing to contribute to. It helps us save a little bit of money where we can when we have our children hospitalized.
I was able to attend the sacrament meeting last sunday that Primary's has. It only lasts 30 minutes, so that is awesome haha. It's hard not to cry when you are there. Knowing the people that surround you are hurting and struggling. A women sang "I am a child of God", and it was very beautiful. So many of us began crying as the song was sung. Afterwards there were complimentary blankets to take home that the ward had made. A little patch work was on the corner, I will post a picture. Reading what it said made me emotional.
Seeing children in the halls with monitors and IV polls is very humbling. I saw children and teenagers come in and play in the new forever young zone to get away from the reason why they are there. They had a tree where you can make a wish and stick it on there. I made one for Lucy, I wished for her to be healthy and strong. I really enjoyed reading the wish that a little girl could be in an Irish Dance competition. Seeing the sweet girl in her wheel chair in the cafeteria wearing a princess crown. I told her she was a very pretty princess. She lit up, and I knew it made her day. These sweet children that suffer so much, are all so beautiful. And they should all know how great they are everyday.
Truth be told I suffer, I really suffer some days. The last couple of months have been rough on me. Some days you go by doing well, and then others it feels like someone threw bricks at your face. I don't want to go in every detail of what makes it hard right now. I just have bad days is all. I think I've come to the end of my rope with questions. I know people care, I know people mean well. But, if you got the question everyday asking if your child will ever be normal all the time... Wouldn't that hurt you? Guess what, my child will not grow up like other healthy children. She won't and that is how it is. If you wonder why, I have wondered the same thing. I don't have the answers, we have no other children to base her off of. And with all children that have genetic issues, they don't all manifest the same outcomes. They are unique and write their on story. You know I have one answer for you, and this I am sure of. She has a perfect spirit, can't that be enough of an answer for you? She does as well as she can do with her physical limitations. If you had seizures and low muscle tone wouldn't you be in the same state she is in. If you see this, then why ask? I don't care about some questions. I really am fine with it. It's the questions that aren't tactful that really hurt. Will my child ever do anything you consider normal? I have no idea. If you want to ask God, go for it. I've been asking him that same question. I have a beautiful child that is as sweet as they come. I love her, and whatever happens happens. All that matters is that she is loved, I will punch kick or fight someone to protect this sweetie. I had to do that with a doctor recently, yes you saw the post. He came in at the hospital and apologized. He had no idea what he had said, I told him. It was super awkward, but he apologized.
I'm going to try and upload some pictures, hope they work! Thanks for reading and understanding, thanks for the love and support you have given!
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