As I continue recounting me and Jackie's journey from birth to the present, I will also post important stuff as they happen so that I won't forget the dates.
When I came home from work on Friday, my Mom had been with Jackie and told me that Jackie had slept all day and didn't seem herself. Jackie hadn't been feeling well for a while now, that damn congestion. It seems that every time that she gets close to her menstrual cycle she gets all congested, coughing and just feeling sick. Well anyways, on Friday night I had to keep getting up with her because her breathing wasn't right, she sounded all congested and her oxygen levels would go down, I would suction her to try to get her to cough, give her a breathing treatment and get her stable and after an hour or so she would start up again. Sometimes her oxygen level would go down really low and I started getting the feeling that I would have to take her to the hospital to make sure the pneumonia wasn't back, but of course I was by myself because the Hubby had to work lake, he didn't get home until almost 3 am.
The next morning I got up and started doing the usual routine with her but something in my mind get telling me that she was going to end up in the hospital again. Around 11 am we decided to take her to the ER to make sure nothing serious was happening and after waiting long hours in the ER the doctor finally said that the x-rays looked better than the ones from June but her white blood counts were very high. I told them that I could guaranty it that she has a UTI. They tested and she definitely did. So because the blood counts were so high and her blood pressure was so low they felt it was better for her to stay. Finally went into a room at 7 pm. Her Dad stayed with her the night and I came home around 8:30 or so, did a quick post on FB and then went to bed, was exhausted. To top it all, I got a new pair of glasses, wore them at work on Thursday and have been feeling sick with motion sickness symptoms since.
The good news of all this (I always have to find something good about all my setbacks in order to stay sane), is that her lungs are GOOD no fluid, that is my biggest fear that the fluid comes back and she will need to have tubes put in again.
Sunday morning I got a call that she is being send home today. Thank you GOD!
Sunday, August 22, 2010
Sunday, August 15, 2010
My First Breakdown
In the beginning I had many small breakdowns, like when I was exhausted or when it seemed like things never went my way. Nothing major, but I think the first time I got really emotional was when Jackie was about 7 years old. I was working the night shift and got a called from my Mom, who was staying with us at the time. I took me by surprise because I usually didn't get calls from home unless it was and emergency. I would usually call them to find out how things were going. Well when I picked up the phone my Mom told me that Jackie got her period. I was completely stunned. I hung up the phone and when into the bathroom, locked myself in one of the stalls and just started crying. I couldn't believe it. I was in there for a good 15 minutes, then washed my face and went back to work like nothing had happened. I always try to put up a good front. Hate to bother people with my problems since I know everyone is going through something in their own life so why should I burden them with mines. I've had people comment "with all the stuff you have to deal with you seem to always be in a good mood." My feeling is, why should I take out my problems on other people, it's not their fault.
After the shock was over I had to start dealing with the situation which meant many doctors appointmnet. I was referred to an endocrinologist at Children's Hospital, after many test she was diagnosed with "Precocious Puberty".
When a child has Precocious Puberty, it means that they are becoming an adolescent. Girls tend to get their periods, their breast begin to develop, get pubic or underarm hair, acne and start sweating like an adult. For boys growth spurs, acne, enlarged testicles or penis, or pubic or underarm hair, voice starts to change.
For further info you can see this link
http://www.mayoclinic.com/health/precocious-puberty/DS00883
Treatment: Since she was only 7 we had to stop her development. According to doctors, when you go through puberty, you stop growing (although some parents say that their child continues to grow even after puberty). We had to start giving her monthly shots to stop it so that she could grow some more, then we when she reached the age of 11-12 they were stopped since that is the age most girls start their cycle. Needless to say these shots were not cheap, they cost $400 each which the insurance did not want to pay for. I had to appeal and get all kinds of medical letters until finally it was covered.
It wasn't easy dealing with this but we did. Jackie's height now is about 4'9 to 4'11.
After the shock was over I had to start dealing with the situation which meant many doctors appointmnet. I was referred to an endocrinologist at Children's Hospital, after many test she was diagnosed with "Precocious Puberty".
When a child has Precocious Puberty, it means that they are becoming an adolescent. Girls tend to get their periods, their breast begin to develop, get pubic or underarm hair, acne and start sweating like an adult. For boys growth spurs, acne, enlarged testicles or penis, or pubic or underarm hair, voice starts to change.
For further info you can see this link
http://www.mayoclinic.com/health/precocious-puberty/DS00883
Treatment: Since she was only 7 we had to stop her development. According to doctors, when you go through puberty, you stop growing (although some parents say that their child continues to grow even after puberty). We had to start giving her monthly shots to stop it so that she could grow some more, then we when she reached the age of 11-12 they were stopped since that is the age most girls start their cycle. Needless to say these shots were not cheap, they cost $400 each which the insurance did not want to pay for. I had to appeal and get all kinds of medical letters until finally it was covered.
It wasn't easy dealing with this but we did. Jackie's height now is about 4'9 to 4'11.
Friday, August 6, 2010
Jackie’s Dance Class
Like I said on my previous blog, when I noticed that Jackie wasn’t developing as other kids, I tried putting her in various types of activities to get her out of her shell.
Before I continue I should probably explain what I mean when I say “getting Jackie out of her shell”. When Jackie was about 3 or 4 she started covering her face with her arm to avoid making eye contact. It wasn’t all of the time, but for the most part when you wanted her attention she would do it. Sometimes you would try to interact her in a game and she would play but covering her face. The only time she didn’t do it was when she was alone with me and we would be playing or doing stuff or when she was playing with her brothers. She LOVED riding her big wheel with her brothers (I remember hers was purple and pink, H’s was black and R’s was navy blue) or being in the kiddy pool with them, they would stay in there for hours. At school she did it all the time. When they were trying to get her to do something they would put her arm down and she would bring the other one up.
So back to what I started. One of those activities was dance classes. She took tap, together with her brother R, and ballet. Sometimes I would peek in and she would be doing the tap steps but covering her face. At home I would ask her to do the steps, when we were by ourselves of course, and she would say “tap, tap, shuffle” and do it. The classes went on all through the winter and in the Spring they had a recital. I not only was paying a weekly fee for their classes but I also had to buy tap shoes, ballet slippers and costumes for both tap and ballet and buy the tickets to see the recital. So recital day came, and I was in the back getting her ready waiting for her turn and when she finally got on stage she just stood there and cover her face, I think maybe she moved her foot a couple of times. The second time she was suppose to go up, I had her all ready looking so pretty and at the last minute she needed to use the bathroom, which with Jackie that meant sitting her there waiting and waiting and never doing anything but since I didn’t want to take the chance that she might have an accident on stage, I hurried and took her to the bathroom and I waited and when we finally got back her class had already gone on stage and finished. So that was money on costumes down the drain. R’s performance was great. There were only 5 boys in the class and they did a tap routine to Hello Dolly but his pants were a little big on him and he would sing move his legs and pull his pants up. Did that through the entire performance but it was great.
I also tried music classes but that didn’t work out either. Poor R had to do all the activities that I would think up for Jackie because since he was younger I had to take him with me everywhere we went.
I’ve always felt guilty for not being able to do more with Jackie and always blaming myself for her situation. Always saying “well maybe if I had done this different or taking her to different doctors or better schools, etc. she wouldn’t be the way she is now” but writing this I realized that I did do things to try to help her. Maybe I could have done more but just maybe it was meant to be and no matter what I had done or not done in the long run she would still be the way she is now. The thing that still hurts me is that I know that there were plenty of time that I had to put H and R’s needs aside because Jackie needed my attention and I was not able to do as many things with them as I would have liked to but I hope that now that they are older and have their own children they can understand what I was going through and forgive me for not being there all the time for them. I want to let them know that it wasn’t intentionally. Sometimes in life you have to do things that, at the time, you don’t realize it is affecting other people and when you finally realize it you can’t change it.
One thing I have to say is that I have to thank Jackie. Because of her, her Dad and I are the people we are today and she has helped our marriage to be stronger. Most marriages that have a child with needs end up divorcing but with Gods guidance and giving each other strength we have been able to overcome many obstacles. I'm not saying that we have the perfect marriage (because no one has and if they tell you otherwise they are lying), there are days that I want to send him to the moon and he probably wants to do the same with me but that is what marriage is all about.
Before I continue I should probably explain what I mean when I say “getting Jackie out of her shell”. When Jackie was about 3 or 4 she started covering her face with her arm to avoid making eye contact. It wasn’t all of the time, but for the most part when you wanted her attention she would do it. Sometimes you would try to interact her in a game and she would play but covering her face. The only time she didn’t do it was when she was alone with me and we would be playing or doing stuff or when she was playing with her brothers. She LOVED riding her big wheel with her brothers (I remember hers was purple and pink, H’s was black and R’s was navy blue) or being in the kiddy pool with them, they would stay in there for hours. At school she did it all the time. When they were trying to get her to do something they would put her arm down and she would bring the other one up.
So back to what I started. One of those activities was dance classes. She took tap, together with her brother R, and ballet. Sometimes I would peek in and she would be doing the tap steps but covering her face. At home I would ask her to do the steps, when we were by ourselves of course, and she would say “tap, tap, shuffle” and do it. The classes went on all through the winter and in the Spring they had a recital. I not only was paying a weekly fee for their classes but I also had to buy tap shoes, ballet slippers and costumes for both tap and ballet and buy the tickets to see the recital. So recital day came, and I was in the back getting her ready waiting for her turn and when she finally got on stage she just stood there and cover her face, I think maybe she moved her foot a couple of times. The second time she was suppose to go up, I had her all ready looking so pretty and at the last minute she needed to use the bathroom, which with Jackie that meant sitting her there waiting and waiting and never doing anything but since I didn’t want to take the chance that she might have an accident on stage, I hurried and took her to the bathroom and I waited and when we finally got back her class had already gone on stage and finished. So that was money on costumes down the drain. R’s performance was great. There were only 5 boys in the class and they did a tap routine to Hello Dolly but his pants were a little big on him and he would sing move his legs and pull his pants up. Did that through the entire performance but it was great.
I also tried music classes but that didn’t work out either. Poor R had to do all the activities that I would think up for Jackie because since he was younger I had to take him with me everywhere we went.
I’ve always felt guilty for not being able to do more with Jackie and always blaming myself for her situation. Always saying “well maybe if I had done this different or taking her to different doctors or better schools, etc. she wouldn’t be the way she is now” but writing this I realized that I did do things to try to help her. Maybe I could have done more but just maybe it was meant to be and no matter what I had done or not done in the long run she would still be the way she is now. The thing that still hurts me is that I know that there were plenty of time that I had to put H and R’s needs aside because Jackie needed my attention and I was not able to do as many things with them as I would have liked to but I hope that now that they are older and have their own children they can understand what I was going through and forgive me for not being there all the time for them. I want to let them know that it wasn’t intentionally. Sometimes in life you have to do things that, at the time, you don’t realize it is affecting other people and when you finally realize it you can’t change it.
One thing I have to say is that I have to thank Jackie. Because of her, her Dad and I are the people we are today and she has helped our marriage to be stronger. Most marriages that have a child with needs end up divorcing but with Gods guidance and giving each other strength we have been able to overcome many obstacles. I'm not saying that we have the perfect marriage (because no one has and if they tell you otherwise they are lying), there are days that I want to send him to the moon and he probably wants to do the same with me but that is what marriage is all about.
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