Mikey's Story

Yesterday, I found out that our home is in foreclosure. I have no idea what is going to happen next or where Mikey and I will go. I don’t know where we will live or how I will find a way to work and still be able to keep him in therapy. I am devastated and aren’t sure what I am going to do. I have applied for every assistance program that I can find, but the economy and lack of state funding in Illinois mean that there isn’t much available. At this point, we’re taking it one day at a time and hoping for a miracle.

My son Michael (Mikey) Matthew was born on Thursday, July 20, 2006 at 5:43 a.m., three months early and completely unexpected. He was tiny, just 2 lbs, 13.2 oz and16 inches long. Immediately after he was born, Mikey was whisked him away to the NICU… I didn’t even get to hold my baby.

Even though Mikey was very premature, he never needed to be intubated. He did have to have a nasal cannula, feeding tube, an IV in his head and also a PIC line in his bellybutton.

When he was first born, Mikey had a cranial head ultrasound that revealed what the doctors believed to be a small brain bleed. At the repeat test two weeks later, they told us that the bleed had resolved. Three weeks later, when he was just 5 weeks old, Mikey had another cranial ultrasound. It was then that we learned that the bleed was actually PVL (periventricular leukomalacia) which would turn into Cerebral Palsy. We were devastated. Mikey’s doctors didn’t know how severe it would be; we would have to wait to see how he developed. We were on an emotional rollercoaster.

On September 12, 2006 we got to bring our little boy home. The doctors told us that because Mikey was premature, he had a higher risk for RSV and could not go to daycare. This meant that I had to quit my full time job, losing my health insurance and forcing us to switch to my husband’s insurance plan. We quickly realized how much this would affect our budget when Mikey had to get monthly Synagis shots for six months. Our new insurance refused to cover the medication which cost $2,000 per shot. As tough as that was, it was just the beginning.

In November 2006, Mikey started therapy services through the state’s Early Intervention Program. During one of the sessions we noticed that his arms were turning blue. Mikey was referred to a cardiologist who performed an echocardiogram and found a small PDA (patent ductus arteriosus). The doctors believe that this will mature and resolve as he develops, but it is important that we have it rechecked to make sure. His next follow up appointment is this fall.

As Mikey grew we found ourselves with a full calendar of doctor and specialist appointments. He had to see a neurosurgeon because his head size was increasing at rapid rate and was off the growth charts. The neurosurgeon sent us for a CT scan. The CT scan showed that he did not have any fluid on the brain (thank God) but that it did show the PVL.

During one of his appointments with his developmental therapist, they noticed Mikey was having staring episodes. The therapist thought he was having “silent” seizures and told us to take him to a neurologist right away. The week of Christmas 2008, we took Mikey in for an EEG and learned that he suffers from Petite Mall Seizures. He started on anti-seizure medication immediately to prevent them from turning into Grand Mall Seizures. We were also given the official diagnosis of Triplegic Cerebal Palsy. It affects both legs and his right arm. We knew that it was coming but hearing the words were hard to swallow. Not knowing if Mikey will ever walk or live a normal life broke our hearts.

Mikey had to be followed by a urologist as he had bilateral hernias and undecended testicles. He had surgery for this in April 2008. He no longer needs to see this specialist!

Mikey has suffered from several ear infections. In December of 2007 he had surgery to insert ear tubes and then again in June of 2009 after the first set stopped working. He still has one functioning tube that will need to be surgically removed in the future if it doesn’t fall out on its own.

Mikey started seeing Dr. Gaebler- Spira, the Director of Cerebral Palsy Program at the Rehabilitation Institute of Chicago. There, Mikey started receiving Botox injections in his legs to help with his tight muscles. He had to start wearing leg braces, which he HATED and still hates. He goes every three to four months for the Botox and it really helps. He was recently given night leg splints that he wears when he sleeps. These are like the regular leg braces help stretch the muscles in his calves.

Just when I thought things couldn’t get worse, they did. On December 3, 2008 we were faced with another challenge - my husband was laid off from his job. He carried our health insurance and was our sole financial provider. Our world was turned upside down once again.

In April 2009 we got Mikey’s wheelchair. WOW!! Talk about a smack of reality. Never in my wildest dreams did I imagine that I would ever have a disabled child. Seeing my little boy in this chair just made me realize that I had no idea what his future holds.

Between all of the doctor’s and specialist’s appointments, Mikey’s medical equipment, the co-pays, having to leave my job to care for Mikey, and then my husband losing his job, we got into a lot of financial debt. During the six months that my husband was out of work, we got behind on our mortgage and car payments.

Although he has been able to find a job, the salary is less than 50% of his previous salary, making it impossible to catch up. The mortgage company, credit cards an auto loan department are calling because we haven’t been able to pay for them in months. We are on the brink of losing our car and our home. I am scared that I will not be able to provide Mikey with the care and equipment that he needs to live the most fulfilling life.

Our current home is not handicapped accessible. It is a two-story home and every entrance has a step or two. My car can hold Mikey's wheelchair, but I have to lay it on the side have no room for anything in the trunk, even groceries. I have tried to purchase a van several times but have been turned down because of I have no credit, no job and too much debt. As he grows, Mikey is getting bigger and harder to carry. I have constant back aches and muscle spasms from carrying him around and lifting his wheelchair in and out of my car.

I worry so much about becoming homeless and my car being repossessed…. How would I get Mikey to his EIGHT therapy sessions a week? He goes to two aquatic therapy sessions, one hippotherapy (horse) therapy, two physical therapies, two occupational therapies, and one speech therapy session each week.

Even with all of his challenges, the progress that Mikey has made is remarkable. He truly is an amazing child. He can sit if you get him into a sitting position, although if something funny happens or he gets excited, he tips over. During his twice weekly swim therapy (in a warm water therapy pool) he kicks his little legs in the water and makes really big splashes using both arms! He will throw a ball and then try and kick all the way until he can reach the ball. He LOVES being in the water, and I think if he could he would live in water. He’s my little fish.

During horse therapy he sits forward, backwards and sideways on the horse. When he first started his program almost two years ago, he couldn’t sit at all and had to lie down on the horse; now he can ride sitting up using a low bar or just reins. They go for walks outside, make little obstacle courses for the kids and horses to maneuver and even get to play with fun things like shaving cream while riding.

Since starting his physical therapy he works on kneeling, balancing on hands and knees, crawling, and starting to try and take steps using special equipment.

On top of all of this Mikey goes to Occupational therapy twice a week and speech therapy once a week. At occupational therapy he works on using both hands. Since his right hand is the weakest, he is working on stretching and also doing everyday tasks, such as using two hands when drinking from a cup, holding a piece of paper and coloring with the other and also transferring objects from one hand into the other. At speech therapy he works on verbs and adjectives and talking in sentences instead of whining for something he wants. 

During the school year, Mikey goes to an Early Education preschool Monday through Friday for 2.5 hours a day. He rides the bus to and from school and he absolutely loves it! Unfortunately, there aren’t exactly 2 hour a day jobs available, and I wind up spending that time working to catch up on all household chores that I can’t tackle while caring for Mikey.

This child constantly amazes me. He has been faced with so many challenges and health issues and has just come out thriving and loving life. He is truly a miracle.

Three and a half months ago, my husband and I separated and he moved out of our family home. It’s now just Mikey and I. My husband helps out financially but it’s not nearly enough to cover all the expenses of our house, car and bills. To top it off, my husband just had to have surgery, which means that he wasn’t able to work for the last six weeks. Since he doesn’t have any short term disability insurance, he currently has no income. For Mikey and I, that means that we aren’t getting any money at all.

I’ve thought about getting a job, but how would I get Mikey to all of his therapy sessions? The progress he makes is slow but it is there and it’s amazing. His therapists really love him and so do we. More than anything, I want to do everything that I possibly can for Mikey, but right now I’m totally at a loss. We just keep on moving forward, hoping that we find a miracle along the way.