Time Changes Everything

Been a long time again. Halloween is tomorrow. We are back living at my dad's place.  Hunter is now in 7th grade and on the honor roll. Bryton is in kindergarten and is already doing first grade work and reading well. As much as they are similair they are so very different. Hunter's quiet and Bryton gets in trouble at school for talking and blurting out answers. Hunter's teachers report that he likes to contribute to classroom discussions. Bryton's teacher calls him a sponge. We went to Bryton's kidney specialist last week and his diagnosis has changed. He has Multicystic Kidney Dysplasia, which means his kidneys didn't fully develop and cysts took over the areas that didn't form. He will have ultrasounds once a year to make sure the cysts don't try to take over living tissue and the specialist will see him once a year to keep an eye on his kidney function and to make sure he doesn't develop high blood pressure. We will go out trick or treating tomorrow night. Hunter is going to be a vampire and Bryton will be a vampire hunter.

A New Start

It's been a long time since I wrote. But I wanted to share how much our life has changed. We found our own apartment and moved out of my father's place. We also moved to a small town. I knew things were bad at Hunter's old school but of course I didn't realize how bad til we got to the new school. At his old school his only friends were a few girls and his cousin. Now he has a bunch of boys that he's friends with and they play at recess everyday. Resource at his old school was nothing but a study hall for him and he was failing miserably. Now he is actually getting the additional help in the areas he needs. He's also getting the social skills group he needs, as well as a few other things I never even knew could be offered. Bryton is in preschool and loving it. He has to go a few towns over for the program he needs. Socially he is behind still but he is getting better. Where we live there are 2 other kids his age, so he gets plenty of socialization now. He has trouble going to sleep and sleeping through the night but we are going to go discuss this with his doctor. I love where we are at in the country. It's so peaceful I love to just sit outside. I find myself taking less and less interest in the computer (not a bad thing). We have big plans for this summer with the boys which include lots of time outside. What a difference a new start makes!

A similiar journey but different

When I found out I was pregnant with my youngest son I was thrilled. I never thought I would have anymore kids. Due to my different disabilities I had to have numerous ultrasounds and about halfway through my pregnancy they told us that he had dialation in his kidneys. They said it would more than likely disappear before he was born or at the very least by the time he was 1. He was born by scheduled c-section in 2008. I didn't fare very well with the anesthesia they gave me once he was out and ended up with an IV in my neck after I ripped the one in my arm out. The nurse told me afterwards that the anesthesia they gave me was known to make people agressive while they are unconcious. When he was a day old they took him for an ultrasound to seen if the dialation was gone, it wasn't. They said he would need another ultrasound in a month. A month later we were back for another ultrasound. After this one another ultrasound followed a month and a half later. Then I got the call everyone dreads. We had to take my little one to a kidney specialist at a children's hospital a couple hours away. We were nervous the whole way down there unsure of what was going on. Once we got there they had me trying to get him to drink this liquid, no luck. Then they called us back for them to put an IV in. The woman tried 3 times and couldn't get it so they took him to another room for someone else to try. Noone was having any luck so by the time the kidney specialist showed up she decided to try and she had me leave and go down to a nearby waiting room. I was so scared I willingly obeyed. After about 45 minutes to an hour the doctor came back out and decided she was going to admit him because they hadn't been able to get an IV in him. When we got up to pediatrics the nurses there were fuming. They had this little light they used to put IV's in and they couldn't hardly find a place he hadn't already been poked. They told me next time to demand that someone from pediatrics come and insert his IV.  When the doctor came in I asked her why we had been told to come here. She couldn't believe that the pediatrician hadn't told me. There was a mass in his kidney and they suspected cancer. My whole body went numb. During the middle of the night he was taken for a CAT scan and an ultrasound. When the doctor came in the next morning she was confused my his mass. She said it was a cyst but it was odd. She wanted us to come back in 6 weeks for another ultrasound. So we went home scared and praying for a diagnosis of anything but cancer. When we went back 6 weeks later my mother brought up about how my father has polycystic kidney disease. The doctor told us if it was polycystic kidney disease it was the strangest case of it she had ever saw. About 9 months down the road when my little one was a year old a new cyst formed in his other kidney. When the doctor came in she informed us it was Polycystic kidney disease. What a relief to be told that. We knew that could be lived with compared to cancer. He goes every 6 months now for ultrasounds and a checkup. His ultrasound last fall showed that the cyst in his right  kidney had disappeared. This last visit we found out the cyst in the left is growing again but so is his kidney. She said that if it continues to grow she will remove it surgically. My little one had normal development until he turned 18 months old. At 18 months old he stopped wanting to eat and he stopped talking. He also developed an allergy to dairy products. If he drank milk he would double over screaming. The kidney specialist had us switch him over to soy milk and he stopped screaming inpain. A few weeks later she had us switch him to lactose free milk, the screaming started all over again. So back to soy he went. He has had major problems with going from being constipated to having diarrhea. He has been seeing a G.I. specialist for over 6 months for it but still no answers as to what is causing this. At a doctor's visit for my older boy the doctor remarked that my little one didn't act like a normal 2 year old. He sent us for an early learning screening and sure enough he was delayed. I decided to switch pediatricians and found out that the doctor he had, had been falsifying his records. They got him in early intervention for speech and sensory issues. The therapists were not happy that they only had a little over 6 months to work with him. But, boy once the speech therapist reached him through sign language he took off like a rocket. He still doesn't talk much except for making his needs or wants known. He doesn't answer questions but they are gonna work on that with him this fall in preschool. The OT worked on getting him to eat. He did wonders with that and now eats almost anything. When he starts preschool in the fall he will be in the special class due to lack of social skills, same as his brother. Overall it looks as if my little one will probably end up with a diagnosis of Asperger's down the road as he is so much like his brother and yet so different. Both of my boys are extremely intelligent. My older one likes to hide it because as he says then the teachers expect more out of him, but my little one is eager to show just what all he knows. He knows almost all his colors, most of his alphabet, and can count up to 14. All this and he's only 3. A new journey awaits us with both of these boys. My eldest is becoming a preteen and getting all the stuff that comes with it (ex. acne and mood changed) and my little guy is about to enter the world of preschool and beyond. I pray it will be a smooth journey for both of them!

Million Dollar Baby

When I was born my parents called me their million dollar baby, as they had been told they would never be able to have another after my brother. By the time I was an adult they said I had definetly cost them a million dollars in medical bills over the years. When I was born the doctor who delvered me yanked me out when I got stuck in the birth canal and damaged my left arm resulting in winged scapula and Erb's Palsey. My left arms bends out like that of a chicken wing. My pediatrician told my parents the good news was I would never be left handed... lol, low and behold I'm left handed. When I was about 18 months old I started to throw up any food that was put into me. After several tests it was discovered I had a thyroglossal duct cyst in my throat. My parents were uninsured at the time so the surgeons wouldn't do the surgery unless some organzation would pay for it. After encountering several dead ends Easter Seals agreed to pay for it because they were told if it wasnt done soon the cyst would crush my voice box and eventually cut off my air supply. By 2 I still wasn't walking to which the doctor told my mom it was nothing to worry about. I finally started walking at 3. When I started kindergarten I was the smallest kid in the class and very clumsy. My teachers would bring it up at every conference and also how my motor skills were delayed but noone seemed willing to refer me for help. If the doctor was asked about it she would say I was fine and would grow out of it. Finally in 2nd grade I had a teacher that said enough is enough and this child needs help. After more visits with specialist we were given a name for the condition I possibly had Ehlers Danlos Syndrome or EDS. I wasn't truely diagnosed until I was an adult. With that in hand I was given OT and some PT.  By 7th grade my handwriting was finally somewhat legible. Life consisted of me falling and having to go have x-rays to make sure nothing was broke. The school nurses always knew me on a first name basis. At 15 I was reevaluted by a physical therapist and told at the rate I was progressing I would be in a wheelchair by the time I was 30. Pretty soon I was an adult and married with a child. I was tired ALL the time, I could barely function or take care of a baby. It was only after I got divorced that I found out why I had been so tired. I was diagnosed with an autoimmune disease called immune thrombocytopenia or ITP for short. It is a disease where your antibodies kill your platelets. A normal platelet count is no lower than 150,000 mine was 1,000. I spent a few days in the hospital and was given a new drug to which I responded very well. A year later when I was discharged by the hematologist he told me that he never expected me to leave the hospital alive and infact normally if someone had a count below 5,000 they were dead. I will have to have yearly bloodwork the rest of my life to make sure I don't come out of remission from it. Praise God that He had better plans for me. A few years down the road my fingers started to curl underand I began to start dropping things. When I brought it to my doctor's attention he sent me for a nerve conduction study. I then was sent to a neurologist, where I was told I had Charcot Marie Tooth Syndrome also known as CMT. It is a degenrative nerve disease. I was finally given AFO's (leg braces) to help me with walking. Well that pretty well brings us up to date. I am proud to report I will be 30 next month and am not in a wheelchair :)

A journey into the unknown

When I first knew my child was different he was but a toddler. I had worked with children his age before but never had I seen such behavior in a child. At home he was fine but when we would go out in public it was like I had a whole new child with me. I had to warn people not to get to close to this sweet smiling little boy and man did that get me looks until this sweet smiling child was no longer smiling at them but now was hitting them across the face. Then came the looks of what is wrong with this child how can he go from smiling one minute to hitting you the next. It all seemed like a ploy at the time that he used to reel them in. As he got a bit older he stopped doing that but there was still this different child out in public. He would be calm and well behaved at home but take him out and he was WILD. When he started preschool he was just in a regular class, but soon the teacher was saying that my child was slow in every way possible, which of course I knew wasn't true. So, they had him tested yet again and yet again the testing came back that he was an extremly intelligent child but this time they knew there was some delays in his social skills. They ended up putting him in a smaller class and then he worked his way slowly back into a normal size class. Then it was time for kindergarten. That year went pretty good. He had a wonderful teacher who was astounded by this 5 year old who was able to tell her how he needed his own space. He wasn't able to concentrate at a table with other kids. Then came first grade, what a year! The teacher he had seemed to have him pegged as a troublemaker from day one. It always seemed like he couldn't do anything right. I dreaded parent-teacher confrences because she focused solely on the negative and never on the positive. Towards the middle of the year after his little brother was born he became very hyper. The doctor decided to put him on a med for ADHD. He went beserk and became very agressive. He ended up in the principals office 3 days in a row. I went in for a meeting with the principal and when she found out he had been put on meds for ADHD she demanded he be taken off. She didn't believe that was what he had and referred me to a new doctor. We met this new doctor over summer break. After spending 5 minutes with my son he told me that he believed my son had Aspergers. I had never heard of it. He explained to me how it was on the autism spectrum but that it mainly affected their social skills. My son fit the bill so we were sent to a specialist for him to be tested. Sure enough that's what he had. His doctor put him on some nonstimulant meds. What a difference they made! The sweet calm child that I seen at home could now be seen out in public most of the time. He is now 10 and still on the same med. He has his moments but we deal with them. Each day is a new adventure for us. I will go into more depth with my younger son in my next post and also share a little more about myself and why this is a disabled mom's journey.