Seizures

Well the other day Jackie got a seizure and as I laid in bed after the ordeal I started thinking about the blog. I've been away from it for a long time now so a good reason to start it up again is to talk about her seizures.

Jackie got her first seizure on Oct. 31, 2003. I know the exact day because it was the same day that we closed on our house. We had finally manage to buy our house and after the closing we went home and picked up my Mom, Jackie, son and headed to the new house. Mind you by new house I mean that it is new to us because in reality it is an old house, almost 100 years old and needed work but at the time it was exactly what we wanted (and could afford). After carrying her inside she baptized it my making a mess on herself but that's beside the point. That night after we were all in bed my Mom ran into my bedroom screaming that Jackie was "dying". We ran in there to see her with her eyes rolled back and her body shaking, then my husband started panicking also -- I should tell you that after the ordeal he told me that he panicked because he saw his father die and it reminded him of that -- I went into auto pilot and called 911 told them what was going on and changed my clothes while I waited for them to come. We went to the emergency and that's when they told us what it was because we had never seen anyone with a seizure before. After it had passed her jaw was locked open so they had to put it back in place. Now she gets them at least once a month and they tend to coincide with her cycle.

Remembered when I said I went into auto pilot? Well I tend to do that with emergencies, I place my brain in a different state so I can deal with the issue, then when it has passed that's when it hits me and I start crying, panicking, etc. With that said, now every time she gets a seizure I get very nervous because I haven't been able to grasp the though of seeing her go through it and now my husband is the one in control like its nothing.

Since we started having to deal with seizures we make it a point to ask questions to anyone that we meet that has had them and we've come to the conclusion that when a person is having one they don't feel it and when it is done they have no idea that it has happened. This gives us some relief because now we know that she is not in any pain and as long as she is stable in her chair or bed she is safe.

Life Continued

So after dealing with my first breakdown issues life continued. I continued working nights so that I could have my days free to be able to go to Jackie's school and check up on how she was doing also dealing with her brother's schools and going to their school activities etc.

After 10 years or so of working nights I switched to the day shift which put a lot of stress on me because I had to make sure everyone was off to school before I left for work which wasn't easy because my boys were in the METCO program and their schools were in another town which meant that they had to be at their bus stop by 6:30 am. Well let me tell you, there were plenty of times when I was chasing that bus all over Boston trying to get to the next stop before she did. On the days that I missed it completely, I had to drive them to their school, which was not close, rush back to get Jackie home before her bus showed up to pick her up then jump on the train so that I could be in work before 9 am.

In 1996 we decided to move to Puerto Rico near my husband's family. We were hoping that the change would be good for Jackie since she would be able to be outdoors more. Boy was I wrong....

Hospitalized Aug. 21, 2010

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!

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.

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.

The First Years

During the first year of Jackie’s life everything was going normally except for her feedings.  She did  not want to feed.  I tried breastfeeding but only lasted 3 months, then tried different formulas until I was able to find one that she would take which, of course, was the most expensive and hard to find.  Jackie started walking at 10 months and saying your normal baby words.  After she turned one she started to eat normally but as she got older she would constantly eat.  She would eat even though she was full.

I started noticing that there was something different with Jackie when she was around two.  I noticed that she stopped learning new words and the words she did know she would repeat them over and over again.  Her speech was mostly jargon and would have crying fits.  Every single night she would wake up crying and I would have to go to her bed to try to calm her.  I was always exhausted.  Jackie was 21 months when my younger son, R, was born, we had bought a house and moved in a month after R was born then 6 months after that I started working 5 to midnight.  I would get home around 12:30 am went to bed around 1 something, after a couple of hours would have to get up to go into Jackie’s room, would fall asleep then be up by 5:30 am to get my oldest son ready for school and bring him to the bus stop.  I worked the night shift for 10 years and only slept about 5 hours a night during that time.

Every time I brought Jackie to a doctor’s appointment I would mentioned that she wasn’t progressing like she was suppose to.  We were referred to get different types of test and I put her in a play group.  Then when she was around 3-4 she went into an early education class.  When she was ready for kindergarten it was obvious that she would not be able to be in a regular class setting so I visited all types of program and got her in a school outside of Boston.  In the meantime we continue with the testing.  She was diagnosed with Autism.  Few years later she was diagnosed with Pervasive Development Disorder.

We continued with this diagnosis and kept her in special needs classes.  I also put her in dance classes together with her younger brother.  Tried music classes but nothing seemed to get her out of her shell.  She would talk some but repeated the same things over and over.  Sometimes she would drive me crazy repeating my name…   “mami, mami, mami” over and over again.  I would say “yes Jackie”, she would respond “nothing” then start all over again.  Or she would say “mami mira esto” (mommy look at this) over and over and over again.  But I have to say, the things she knew and understood were both in Spanish and English. 

On my next blog I will tell you how she did in her dance class and about my first breakdown

How it Began – The Pregnancy

My pregnancy with Jackie was a normal one, nothing out of the ordinary, just gained a lot of weight like with my other pregnancies. At the time my oldest son was 8 years old and I was working at a brokerage firm. I was an assistant to a broker who, by the way, was considered a genius yet was the biggest slob you can ever encounter and could not handle simple things. He was so bad that they would give me his paycheck so that I could mail it to his wife or it would get lost in the mess he had in his office. He would walk by you and he would fart and not blink an eye. Little did I know then that when you get into your 50s that happens to you and you don’t even realize it. It was also the placed that I was first introduced to a computer. My job was to learn to work the computer, a Wang, teach the other employees how to use the computer and type a report which he would give to me on Monday morning, I would type it proof read it and have it at the printers by noon time so that I could get it back and put in the mail to our clients before I went home at five. Thinking about it now, I can just imagine all the typos that were in those reports. I wonder how many times I put “asses” instead of “assets” or “pubic” instead of “public”. Oh well that’s water under the bridge. Here is 27 years later and I’m still working as an assistant, now for a lawyer, and still making typos but now there is spelling so I can catch them (well most of the time) before sending anything out. Although I have to say that computers have come a long way since then. Okay seems like I’m getting off track here I should be telling you about how it began with Jackie since this is about her not me. Sorry about that. Just so you know, I might get off track a lot since I’ve had that issue all my life and now that I’m older it is worse. I start one thing, think about another and lose track of what I was doing before and continue all day jumping from one thing to another. By the time I go to bed I’m exhausted and haven’t accomplished anything.

Back to the pregnancy, like I said it was a normal pregnancy and normal delivery, although I was a trooper, I told the nurses that I did not want any meds, IV or episiotomy so I delivered her all naturally. -- OMG, it is true, young people are STUPID! What the hell was I thinking. If it was now, the minute I walked through that hospital door I would be screaming “DRUGS, GIVE ME DRUGS AND KNOCK ME OUT!” The hubby had it right, they asked him if he wanted to look and cut the cord and all he did was shake his head no and stayed near my head so he wouldn’t have to see anything. -- Finally Jackie was born. Little did I know that my life was never going to be the same after March 4, 1982.