I am Lauren the "Mom". I am almost 26 and work in pediatrics at our local hospital when Riley lets me. :) I also just started back to school to work on getting my bachelors. Yes, crazy I know but at this point going to school online is a lot easier than working, I absolutely love my job and everything about it. I was always a "sick" child and seemed to have some issue going on. Everyone one hoped I would grow out of things and I did have a period that things seemed to settle down and things were manageable. When I turned 19 however one day it was almost like I woke up and couldn't eat. It was horrible. I lost almost 20lbs and wasn't that big to begin with. Most doctors completely dismissed me due to my age and me being a women. It had to just be stress. A few things that seemed to be unrelated were found like my hyperactive thyroid, pernicious anemia, and my horrible UTI's from childhood returned with a vengeance and as kidney infections now. I learned to just get used to my stomach issues and for he next year and half slowly was able to eat a few bites of food for a meal and tolerate it. When I was pregnant with Liam it did seem to get a little better and I have seemingly managed it with diet and reglan since. After having Riley the intestinal motility issues have definitely gotten worse however but I manage. Everything seemed to be unrelated however and no one thought it could all possibly be one underlying thing. I find it a ironic that God decided to give me Riley. I feel blessed to have children who are "special". I think before having Riley we all took life very much for granted and now we will never do that again. We enjoy and try to remember everything. Every laugh, every smile, every tear, and every hug are so very special. We have only been going through this journey for a very small amount of time compared to some I know, 15mo., and have experienced pain that we didn't know existed. I'm sure we have a lot more to go to but everything we go through is for a reason even if we never know why or exactly what. This is a very hard thing to remember in the heat of the moment but I truly believe that and try to look at my new life and outlook as a gift, a very special one most people don't get and that what gets me through it. One day at a time....
Wil is 34 and we have been together for almost 7 years. We met when we were both working in a nursing home. He used to be a nurse. He left nursing a short time later. He started working in sales just to do something totally different. He was the Internet sales manager at a local car dealership. He really enjoyed sales and was very good at it. Things were great until the economy took a hit and everyone else knows that story. He lost his job shortly before Riley was born. He had planned to take a few weeks off and once the baby was born go to another dealership. Little did we know what was in store for us! He has had to stay home since it is impossible for both of us to work since someone always has to be available to care for Riley and her constant needs. So, he is a stay at home daddy right now and is hoping to start back to school in the fall.
Liam will be 4 on July 3rd. When Liam was born he had severe hypoglycemia. But it seemed to improve with feedings the first day so no one thought much of it and we went home happy new parents. Liam seemed to struggle with feeds and insisted on being fed every 2hrs around the clock until almost 9mo. old when I switched him to mostly formula. We did find he had a milk protein allergy but tolerated the normal formula for that well. We also had all the normal pesky issues like reflux which zantac seemed to help. Constipation which everyone said was normal for a breastfed baby and a little prune juice every seemed to help so everyone was happy. He was also a very fussy irritable baby but we just kind of all didn't pay it much attention since he was growing well and reaching all his milestones. I tried to give him solids at 5mo. and it was a nightmare... He would shoot diarrhea across the room in massive quantities. I tried applesauce and bananas. Both had the same reaction. It was still shrugged off by the Dr.'s and finally seemed to tolerate some things around 7mo. old and then it was just trial and error. When he got his 6mo. shots he had his first ever real "fever" it was over 103 and worried me to death. But after about 24hrs of so he was fine again, just a normal kid thing. At 9mo. I switched Liam to mostly formula and just continued to nurse him once or twice a day. The sleep exhaustion from him still nursing every 2hrs through out the night had become to much by that point. At least once he was on formula he was only waking up about twice a night for a bottle and Wil could get up and help. Within a week he had his first upper respiratory infection which let to his first double ear infection. This turned into the norm for the next 3 years and still continues. It was one infection after the next. He would average about 2weeks of being healthy once the antibiotics were finished and then it started the vicious cycle again. It was constant ear infections that didn't like to go away at first, he would have some strep throat, sinusitis, or croup thrown in sometimes to change it up but they were always accompanied by high fevers between 104 to 106. He lived with a 104 temp for about a year and a half almost. He never acted sick though even with a 104 temp and strep throat he would run around at school all day and seem happier than most of the other kids. No one would even know he was sick, I was the only one who could tell. He got tubes in his ears at 19mo. and no more ear infections but then his tonsillitis took over. Two weeks before Riley was born he had his tonsils and adenoids out and a 2nd set of tubes put in since within two weeks of the old one's being out he had an ear infection. This seemed to help since his tonsils were extremely enlarged and his adenoids were moderately enlarged. Liam used to sleep a lot when he was little and at 2 1/2 he was still taking a 3hr nap every day. Once Riley was born he was thrown threw a loop and quit napping. This caused horrible issues. Between that and the stress of a new baby and then her getting sick and mommy being away he had a bad regression and went from completely potty trained to being totally incontinent again. He was even pooping in diapers. It took over a year to slowly work on this and he's still not accident free on bad days. Liam started walking at 9mo. but always had a funny gait and horrible balance. He was constantly falling even once time went on. Liam was also not speaking very much even at almost 2 but all of this was blamed on his constant infections and the fact that he was a boy. The infections always were presumed to be from daycare and and he would grow out of this eventually.
NOW, for the star who wanted to make sure she topped everyone! LOL
Riley is almost 15mo. old now and it seems like it's impossible for her to be a year old but at the same time I can't hardly remember her as a baby since things were such a whirl wind of craziness. Riley was born on March 3rd and was 7lb 14oz during a repeat c-section. I started having problems from the get go I had a run of V-tach and started having a bad reaction to the spinal from my IV infiltrating and not getting my bolus and plenty more. I should have known then it was a sign. The
I wanted to start this blog to keep everyone who knows and loves Riley updated. I also did it to hopefully be able to share our story with others and so anyone who is just starting this journey can feel comforted knowing they aren't the only ones who are going through this. It is a very lonely place to be when you have to stand over your baby's crib night after night in the hospital and worry and wonder if everything will be ok. I have spent most of the last year doing this and in the beginning it was very scary and lonely to think no one else understood or felt the things I did. I also want very much to show people the other side of Mito. There are some kids that don't have seizures, aren't developmentally delayed, and very big and chubby despite never eating. These kids look normal to the everyone else. You could pass us in the store and we look like every other typical family but obviously we are not. Mito is called the invisible disease. This is a double edged sword since it is so nice to be able to fool yourself into normalcy at times but it's a constant battle to advocate that just because your child "looks good" they aren't. We have to all work together to help people understand this complicated and hard to diagnose disease. We have to find a cure! It has been said to be as common as Cystic fibrosis in Caucasian children and 1 in 4000 children born will develop a mitochondrial disorder by the time they are 10. That means chances are you know someone who has it or has a child with it.