The Generosity of Strangers

A few weeks ago, there was a message in a special needs Facebook forum that I'm a member of where a friend was giving away a Tumbleform II chair with a wheeled base that her kids had outgrown to anyone who wanted it. I jumped on it with zero hesitation. For our family it was an answer to a prayer, more mobility for Matt outside of the wheelchair and that it wouldn't have to go through insurance to get it. Any parent with a child who has special needs knows how expensive medical equipment is and how insurance companies will go out of their way not to cover it.

Upon learning a little more about this chair, I found out that we are the third family to use it and that it has been well-loved. The first family who used it has a son with Cerebral Palsy. When he outgrew it, it was passed it to a family with 9 children, some of whom have special needs and all of them very much loved. I was blessed enough to "meet" their mom, Meredith, in a group for special needs parents and was immediately mesmerized by her family's testimony. She has a blog about her family, their faith, and homeschooling that I love, please stop by and check it out.

We made the hour drive to their home and felt instantly welcomed. I was so excited that I was finally going to meet them in person after chatting on and off for a few months. We didn't get all of the kids together during this visit because both Matt and their kiddos were all in various stages of illness and we didn't want to expose all of them to each others germs, but hopefully we can soon.

Matt loves his new chair, it is far less confining and restrictive than his wheelchair. He has especially loved sitting in it since we put up the Christmas tree because he can get closer and look at the lights.We are so thankful for their generosity and even more when those Facebook friends become friends in real life.

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!

What Having a Child with Cerebral Palsy Means to Us

Today is the first ever World Cerebral Palsy Day!

Matthew was formally diagnosed with Cerebral Palsy back in June. Part of me always suspected it, so I broached the subject with our neurologist and he agreed that he fit all the criteria and we added the diagnosis to the permanent record at that time.

So...what does having a child with Cerebral Palsy mean? Cerebral Palsy can vary from person to person, with the possibility of any number of symptoms. In Matt's case, he has stiffening of the arms and legs and he is immobile in that he cannot sit, stand or walk. We are still in the learning stages of Cerebral Palsy, but rather than talk about what limits Matt, I'd rather show you what having a child with Cerebral Palsy means to our family.

We work hard with our therapists

When we find a problem, we find a way to adapt it to our needs

We enjoy the little things

We find ways to make our work fun

 We work even when we'd prefer not to 

We meet new challenges head-on

And most important, we love  and support each other no matter what!

What does Cerebral Palsy mean to your family?



Matthew's New Wheels

 

 

The day I have alternately been looking forward to and dreading finally came--Matthew finally got his wheelchair.

 

I say looking forward to because the kiddo isn't a tiny little man anymore and my back is killing me. Thanks to the Ketogenic Diet he is on to control his seizures, he is weighing in at almost 30 pounds and he is outgrowing his stroller and high chair by leaps and bounds. At the same time I have been dreading this day for so long. The wheelchair is a big, bright red reminder that Matthew isn't able to walk, or run, or chase around his big cousins like he wants to. For us, it means we have to accept that  yet another dream we have for Matthew will be different than what we thought it would be.

 

He wants to get up and move around so badly. He rolls all over our living room, he tries to sit up and has even stood up on his own when sitting on a bench in therapy sessions. His last physical therapy evaluation showed great promise and twice weekly sessions have been recommended for him. Right now we're just waiting on an opening with a therapist at our rehab center or his school, all of them are fully booked with the new school year starting.

 

I am choosing to look at this as a positive thing, even though there are moments in this that hurt like hell. This chair will give Matthew so much more independence and freedom than his stroller ever did. Already his posture has improved, he is using the wheelchair tray to weight bear through his arms and hands, he is able to see his iPad better which will help when we start using our new AAC program, and he is loving that he is able to look around and see things that he hasn't been able to see before. I can't wait to see how he adjusts to the wheelchair and accepts it as part of his new normal.

 

 

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!