Three Years and a Million Miles

April 17th is a special day in our little family of three. Joe proposed to me on April 17, 2000, and after I called him a liar for tricking me, I said yes to marrying him.

And 10 years later, after a brief cancer scare for me and years of infertility, it was the day of our precious baby boy's first smile on his 5 week birthday. Matthew and I were in New Jersey with my in-laws to see Joe's grandmother who was very ill and had major surgery the day before. She was afraid that she would pass away and never see Matthew so we went to surprise her.

That same day our lives were forever changed when Matthew had the first of many seizures in just a few hours. The day we were thrown head first into the unknown. 

Matthew went through numerous CT scans, MRIs, blood tests, genetic testing, video EEGs,and 3 spinal taps in a week. They sat us down at a conference table in a tiny room and told us that Matthew's brain was shutting down for seconds at a time and when his brain was functioning it wasn't synchronized and working together. They gave us a grim prognosis of Ohtahara syndrome and released us after a week of being there. 

We were told a lot of different things by a lot of specialists that never proved to be true. Matthew doesn't have Ohtahara, his brain isn't shutting down and it did finally start working together. We were told that he would need a feeding tube, so we worked to find him excellent occupational and speech therapists to help us with feeding issues. His favorite foods are now chicken nuggets and macaroni and cheese, just like any other kid his age. He does occupation and physical therapy at school and at an outside rehab center. He works with a vision teacher to improve his tracking skills and with a teacher of the deaf and hard of hearing. He rolls all over our house, he dances in his gait trainer and he flirts shamelessly with every woman he meets. He loves Cars (especially Mater), Mickey Mouse Clubhouse, cars and trucks, and music. He has exceeded all we were told his life would be and continues to work hard every day.

He is our miracle.

Viruses, Intussuspections and Adverse Flu Shot Reactions-Oh My!

So....it's been a while since my last visit here.  Hopefully, I will be able to get this up and running like I always planned soon. Things have been a little chaotic in the last month with Matt in regards to health and schooling and of course, his needs come first and foremost.

 

Shortly after my last post about World Cerebral Palsy Day, Matt began having some problems in school. Prior to this summer, Matt had little to no contact with other kids outside our family and therefore had little to no contact with germs from the outside world. I know that once a kid starts school, it's only a matter of time before he or she starts sharing more than just crayons and toy trucks in class. So less than a month into the new school year, Matt came down with his very first virus ever and begins having issues eating and drinking. We played this game where I would take him to school and at lunch time his teacher would call me to tell me he's refusing to eat for a couple of days. I made an appointment to see his pediatrician, she told me to continue to push fluids and that there is nothing we can do but wait for it to pass. In the end, it passed and he was back in school the next week.

 

Two weeks later, we got virus # 2. By this point Matt had lost a pound and was having Salaam Spasms frequently from not being Keto-compliant, which he had not happened since he started the Ketogenic Diet. It was a constant fight to get him to eat anything and usually ended up in tears, both his and mine. We made another trip to the pediatrician and heard the familiar refrain, "It's a virus, there is nothing we can do but wait for it to pass." And it did pass and he went back to school the next week.

 

The following week, things got fun. Just to keep me on my toes Matt decided to bring out the bigger guns and brought home a sinus infection and an ear infection. So, back to the pediatrician we went. At this point Matt is down 2 pounds because he has yet to make up the weight he lost from not eating during the two viruses. Matt has a wicked allergic reaction to Amoxicillin which means the entire penicillin family is a no-go and the Ketogenic diet limits the method by which he can take antibiotics in that he can't take liquid or chewable medications because of their sugar content. His pediatrician and I went back and forth  through all the literature provided by Matt's dietitian and finally settle on Ceftin. We left with a prescription and a follow up appointment scheduled for the next week.

 

It would be nice to think that all of our fun ended there, but unfortunately for my little Monkey, it didn't . Apparently Ceftin has a nasty metallic taste, which didn't make Matt a big fan. In fact, no matter how we prepared it for him, as soon as the it crossed his lips he would immediately start to gag and throw it up along with everything else we had managed to get into his stomach. Within a couple of days anytime he saw a spoon or a bottle, he would clamp his teeth and lips shut and turn his head away and fight us with everything he had. Three days later, I got a call from his teacher telling me that he is once again refusing to eat and that he seems lethargic and has been sleeping most of the day. So, you guessed it, back to the pediatrician we go! She checks him out and then tells me that he is down 3 lbs., that he is dehydrated and sends us off to the ER for IV fluids. Afterwards, he seems to feel a little better and finally seems to be on the mend. At our follow-up with the pediatrician a couple of days later, he was feeling cruddy again and again we hear that he has a virus, #3 for those who are counting. By now, I've had more than enough. He has been in the pediatrician's office 4 times in about a month, more than he has seen her in the last year. After some discussion with Joe, the pediatrician and his dietitian, we decided that Matt is going to be a preschool drop-out for now.

 

That brings us to last week, the most interesting part of this little drama, so far. After a great weekend of eating, drinking, and pumpkin picking, Matt started getting a little picky with his food Monday. On Tuesday he began turning away from chicken nuggets, a sure sign that something was not right. I called his gastroenterologist and scheduled an appointment for Thursday because this seemed to be a little more than just a virus. Wednesday, he decided that he wouldn't eat anything solid, not even Jello, but he did drink his Ketogenic egg nog drink fairly well. On Thursday, I got him to take about 7.5 ounces of keto egg nog after many hours of fighting. I was panicking and worried by this time. I called our pediatrician and was awaiting a call back when it was time for us to take Matt to the gastroenterologist. We had a 3:30 appointment and by 4:00 we were still in the lobby waiting to be called, when all of the sudden Matt starts screaming in his wheelchair. I know his irritated cries, his tired cries, and his hungry cries, but in the two and half years of parenting this child, I have never heard a cry like this one come out of his mouth. I went to the reception window and told the receptionist that we were going to take him to the ER instead. His gastro heard the screaming and came out the exam room she was in to see what was going on. I explained the situation with her and she agreed the ER was the best choice for us at the time.

 

 When we got into the ER, our pediatrician returned my call and when I explained what was going on and she heard Matt still screaming. She called the hospital and spoke with the triage nurses and we were called within 10 minutes of entering the ER, we were in an exam room. It took the nurses 4 attempts to get an IV into him, and soon we were in another room and Matt was having an abdominal ultrasound. The right side of the scan went well, but as soon as the wand touched the left side of his abdomen Matt started screaming again. The tech was quiet and told us to wait in the room while she went to call the doctor to see if there were any further scans she wanted. About 30 minutes later the tech and a doctor came in and reviewed the ultrasounds and then asked us to lay Matt back on the table again to repeat some scans. After all scans were done the doctor turned to us and told us that Matt had what was called an Intussusception where the intestines can fold inward on itself, kind of like a collapsible telescope, and that he was extremely lucky because his Intussusception resolved itself without surgical intervention. The decision was made that Matt was going to be admitted overnight for observation in case the Intussusception recurred, and that if all went well and he ate and drank we would be released the next day.

 

Friday everything seemed to go better. After a dose of  "Magic Mouthwash" (Carafate, Maalox and Benadryl) to numb his red throat, he began to drink Keto-Cal with no problems. By the time the staff pediatricians made rounds, he had already drank 7.5 ounces and they were okay with us being released later in the day. And here is where I made my next mistake--I asked whether or not Matt could have the flu shot.

 

Matt has had the flu shot before and after the news story back in August stating that children with neurological disorders may be more likely to die during flu season, I didn't hesitate when it came time to decide whether or not he was going to get the shot. My biggest issue at that point was getting him well enough to get the shot, and the doctors and nurses told me that it would be no problem for him to get it done before we were released from the hospital.

 

Well, come Saturday morning we had a problem--a big, red, itchy hive problem. We jumped back in the car and headed back to the ER where my sweet boy was loaded up on Benadryl and Decadron and sent home. Today we saw his gastroenterologist to discuss further testing that he may need, and also, his neurologist to discuss whether the rash he has now is from the flu shot or possibly from an increase in his seizure meds. We are all leaning toward the flu shot as the culprit and tomorrow we see his pediatrician to get a referral for an allergist. Say what you want about our life, it is anything but dull!

Welcome to Our Little Corner of the World

My name is Brandi, I'm a wife and stay-at-home mom, and this is my family:

My husband Joe is an elementary school teacher, although he is no longer in a classroom position. He deals with more of the testing and administration stuff now and he loves his job. We have been married for 10 years and have been together for almost 13 years. Two years ago, after dealing with many years of infertility and health issues, we were finally blessed with our beautiful baby boy, Matthew. Prior to Matthew's arrival I ran a school health clinic for 5 years and cared for middle school-aged kids with a variety of health issues. I loved my job, but as soon as Matthew was born everything changed and I became a stay-at-home mama.

Our life is a lot like every other families, and in some ways very different. We are first time parents of a child with special health needs. When Matthew was five weeks old we were visiting family in New Jersey when he began having unexplained seizures, as many as 7 in one hour while in the emergency room. Since we were so far away from our home in Florida, Matthew was admitted to the closest PICU for observation and testing. This by far, was the worst and scariest week of our lives. After a lot of testing and false diagnoses, we were discharged with an epilepsy diagnosis, a lot of medication, and orders to follow up with a neurologist once we got home.

As we would discover over the past two years, epilepsy was just the tip of the iceberg. We would learn a couple of months later that Matthew was born with genetic abnormalities. His third chromosome had micro-deletions and his fifth chromosome had a section that is inverted. A few months after that we learned after that he has bilateral mild-to-moderate low-frequency hearing loss and would need hearing aids. We went through a stint of plagiocephaly, where the right side of his head was flat on the back. He wore a molding band on his head for 6 months and it made some improvement on his head shape. In October 2011, he was diagnosed with microcephaly due to his head not growing according to normal rates for kiddos his age. Last month after a year of wondering, he was finally given a formal Cerebral Palsy diagnosis by his neurologist. There isn't any one diagnosis that we can use to explain all of his medical issues, so we just go on the best we can and keep living our day-to-day life.

This is the chronicle of our lives--the good, the bad, the messy and sweet.

Welcome to Mattyland!