Author Topic: New at this  (Read 1993 times)

Offline mommyoffour

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New at this
« on: Oct 19, 2013 @ 12:32 PM »
I have just started blogging. I am new to this, but I do not have time to go to counseling so here it goes.
I am a mother of four beautiful children. This have been rough and it seems like every time I think I have everything settled things just seems to get all jumbled up again and then we are off to start another long a terrifying adventure. When my son was about 18 months old he started to have seizures. This was of course terrifying. He was in the hospital for three days and they did and MRI my husband at the time was in the military and was out of state for training. I was at home with my son pregnant with my first daughter at the time. The hospital had called and said he had a ganglioglioma tumor in his brain and this could possibly be why he is having seizures. I was so terrified. I couldn't even speak to the woman. I hung up the phone and called our FRG leader because I idn't have any way to reach my husband.I sent a red cross message and he called the next day so I could tell him the results. They couldn't get him home right away, but they did get him on the first flight back. This is just one diagnosis for our son. after trying seizure medications and nothing working his neurologist said e wanted a full body MRI because he thought our son might have neoblastoma which is a cancer that spreads through the body. During all of this I started going into preterm labor with my daughter at 25 weeks. Bedrest, steroid injections, and boredom ensued. They didn't think I was going to make it to term with her and sure enough at 32 weeks she was here. She is a fighter though and after only 8 days in the hospital she was able to come home. As time went on we had scheduled our son an appointment with a oncologist to discuss our options. Our daughter was now doing therapy several time a week and we just couldn't get her to where she needed to be. she couldn't swallow right she was always crying and couldn't even crawl. When I say she cried all the time I mean I slept maybe 15 minutes at a time at most. My husband even kicked us out of the bedroom. The oncologist said our son needed a biopsy of what was in his brain so we scheduled an appointment with a neurosurgeon in San Antonio. We lived in El Paso at the time. The neurosurgeon said he couldn't do a biopsy because there was to high of a risk to paralyze him on the left side of his body. So, we decided to get a second opinion of his diagnosis. Well around this time it almost our daughters first birthday and I was pregnant with our third child. We had scheduled her first well child appointment the day before her first birthday. The doctor said her screaming and not being able to eat was due to acid reflux and her delays we because she was born premature. I had a feeling something else was going on and the doctor never really seemed like my fears were valid. So, at this appointment I decided to stand my ground and told the doctor I was not leaving until she figured out what was wrong with her. Thank goodness we did that. She checked her head measurement about three times and then told us we should have a ct scan she didn't think it was anything to be worried about, but that we should just to be on the safe side. I was just happy she was actually doing her job and trying to help us figure out what was wrong with her. We did the CT scan the same day and not even and hour later they called and said she had hydrocephalus and that she needed surgery as soon as possible to relieve some of he pressure off of her brain. I was relieved to finally know what was going on with her, but scared at the same time. We had to go to Phoenix for this appointment. The neurosurgeon came in and said without looking at the scan that he didn't think she was going to need surgery. Of course, a  sense of relief came over me. Of course that made me happy, until.... he looked at the scan and said it was much worse than he thought. She had internal and external hydrocephalus and if her soft spot had already closed she would not be here with us. We had a couple days before the surgery so we did everything we could with her to make sure she had lots of fun because any type of surgery on the head is risky. The day of the surgery was so terrifying I couldn't eat I couldn't stop thinking about whether or not this morning would be my last morning with her. I was so scared for her and for us(our family). It seemd like days had gone by during the surgery and of course I was crying my eyes out the whole time I was so scared something would go wrong. After a few hours the surgeon came out with great news. My daughters surgery had been a success. The day after her surgery she was given the ok to head back to where we were staying. We had to stay in the area for almost a month to make sure everything was ok before we headed back. Her surgery really was amazing, the day we brought her home she was crawling and trying to stand up. She was even getting some words out. I was so proud of her. The change was amazing. She also didn't get up any where near as often at night. So, then back home and back to trying to figure out what was going on with our son. We decided we wanted to take him to the same doctor that did our daughters surgery. So off we were again. This time for some good news! We had the appointment and the neurologist says your son doesn't have cancer. (sigh of relief) He has a water cyst on his brain and the seizures are unrelated. So now of course we wanted to get another opinion that correlated with this one so back home and then off to San Antonio with a different doctor. They did an extended EEG and the doctor agreed. That our son has a seizure disorder and that the cyst is unrelated. Of course, seizure medications didn't work, but over time he started to have them only at night. We later got a diagnosis of Ramadilin seizures which are nocturnal seizures. They don't treat them because children usually outgrow them when they hit puberty. My husband and I did not make through all of this together, when my youngest daughter was about 5 months old I left with the kids and moved closer to my parents for about 6 months and then to Washington to get a fresh start. Now, we are starting with my youngest daughter and they just started genetic testing. She has therapy every week and walks with braces and doesn't talk very much. Of course I am terrified to find anything out after what I went through with my other two so I am doing this for support and for other moms that might be going through this so they know that they are not alone. My youngest son is 1 now and he is walking and starting to talk and is as healthy as can be. I just don't have time to go talk to anyone and so I figured this would be the best way to get some stress out and vent. I hope this is good enough for my first one and I will try to get on once a week and post more. Of course, all of this is only scratching the surface of all the feeling I am having, but there are so many things on my mind that it is hard to pick a place to start. So, see you next week ladies!!!



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