Mrs. Watkinson, your son has had a stroke in utero. Everything went silent after that phrase. I honestly do not remember what the doctor said after that. Luckily, mom was with me and heard everything else that was said. A stroke?? Only old people have Strokes. How could this happen, was it something that I did? Was it the stress I was under? Was it from the umbilical cord wrapped around his neck? Was it from when I passed out and hit my head? WHAT DID I DO WRONG?? These were the among the millions of thoughts that raced through my head. On a side note, I was very blessed that my ex-husband’s grandparents were on the board of the hospital because the neurologist was taking his sweet time to read the scans and help so I called my ex-husband crying, he called his grandparent’s and next thing I know the President of the Hospital, and Leiland’s great grandparents are there and the doctor stepped up his care. The nurses were quite impressed at how his demeanor changed (this particular neurologist is an asshole). I know that we were told that he would have a life of challenges ahead. The doctor could not tell me whether he would be able to walk, talk, feed himself, go to the bathroom by himself, do daily living skills when, or just the basic things any kid does. They couldn’t tell me whether he would be a confined to a wheelchair or be able to walk. They couldn’t tell me anything. Before we left the hospital and I asked the doctor what we do next, he told me to take him home and love him. Take him home and love him…. No shit, sherlock. I was already going to do that but what else, tell me something. He was no help, luckily, the angel nurses were more help. The pointed me into the direction of Early Intervention services through ARC. When Leiland was 4 months old, I started him in Early intervention services through ARC. He had a wonderful occupational therapist named Kim who worked with Leiland, he wasn’t hitting his milestones, so she worked with him on things like rolling over, sitting up, keeping his thumb out and his hand open among other basic baby skills. She also taught me massage techniques to keep his muscles loose. As he grew, she worked with him on grasping, since his right hand did not work, and she taught him how to use his left hand. Later on, we had Ann, an amazing Physical therapist who came to our home and worked with Leiland on standing and walking. These two women were just a crucial part in helping Leiland learn the move his body, he finally walked at 2 ½ years old with the help of leg braces and a walker.

                So, here’s the thing about your kid having a stroke, you don’t know what their life is going to look like or what other medical issues they are going to have. Growing up, Leiland was no exception to this. When he was a baby, he had the WORSE reflux and colic. He was on medication, and they told us to thicken his bottles. Mind you he was already on a special formula, Alimentum, so we thickened it with rice, oatmeal or multigrain. Nothing was working, he wasn’t gaining weight, so I took him to the feeding clinic at the Children’s Hospital. After his evaluation they said that he favors one side over the other and that since he wasn’t gaining weight, we need to talk about a feeding tube. F…. no I thought, there has to be some other reason why he isn’t gaining weight, something else is going on. Boy, was I right. I will say as a parent, always trust your gut. If something you feel strongly isn’t right then your intuition is probably right, and I would find this to be true on more then one occasion.  I took Leiland to the allergist and had him tested. The reason why he wasn’t gaining weight? What we were giving him, he was allergic too.  Leiland was on a very restrictive diet for a VERY VERY long time. His first birthday, he didn’t have a cake because he was allergic to all the ingredients, so instead we made him a veggie parfait out of baby food. Leiland has had more allergy tests then I can count.  It would take years for Leiland to outgrow most of his food allergies, he still has environmental allergies and asthma which he is still on medication for and has been most of his life.

Not only was he seen by an allergist when he was a little thing, but he was also seen by a gastroenterologist. We spent about 11 years seeing one, the thing about having a stroke and in turn having hemiparesis is that is just doesn’t affect your exterior extremities. It affects your internal organs too. When the reflux was under control, we faced chronic constipation. He literally had had this whole life until he was an older teenager.  He has undergone multiple GI testing over the years and was on multiple regimens until Lactulose was the save all. Leiland finally got to the point where he no longer needed it.

Next doctors on the list that we saw Ophthalmology, ENT, Pulmonology.

Leiland’s eyes wandered a lot, he wore glasses and at very young age to try and correct this. When the glasses didn’t work, he had Strabismus repair surgery (tightening the eye muscles) at the age of  2 ½. That day was one I always remember, he cried going back into surgery and when he came out of surgery and he cried, he cried blood from his tear ducts. It was one of those things you see out of a horror movie. After the surgery he still had to wear glasses, but the eye wondering for the most part stopped. To this day it only occurs every once and a while and he still wears glasses. We were frequent fliers at the ENT, Leiland suffered from Chronic Sinus issues, ear infections, snoring. Leiland had two sets of tubes when he was younger, and his adenoids removed. Pulmonology, the good ol lung doctor. Leiland has had asthma his whole life, Spring, Fall and Winter are not his friends, even to this day. Although now a days his lungs are doing well even with getting COVID. When he was younger, he was constantly using a neb machine, he was hospitalized a few times for it (one time being Halloween and he was dressed like a pirate in the hospital and his uncle brought him a 3lb bucket of candy. Then his little brother went as Peter Pan and brought him some of his candy). It was a major issue.

I know this is probably getting tiresome at this point but hang in there with me. There is a point to me telling you all of this.

Next few doctors were Endocrinology, Rehabilitation Specialist, Orthopedist, Cardiologist.

 We went to Endocrinology for a few years, Leiland had body odor from a very young age. Plus, the bone in his right hand seemed smaller than the one in his left. So, we were sent to see Endo after multiple tests were run. Did you know that kids with Brain Injuries are more likely to have precocious puberty then those without a brain injury?  Yup, Leiland started puberty younger than normal kids his age. His rehabilitation doctor we still see to this day, and we absolutely love him. In fact, most of his doctors have been with him for over 10 years. Anyways, when Leiland was little, he went through multiple rounds of Botox and phenol injections. When he was awake for them, they did not seem to work as well. When he was asleep, and they could pinpoint the exact spot in worked a lot better. But man, taking him in and having them put him to sleep and then him coming out of it was the worst. Thinking back, it really did break my heart even though I put on a brave face in front of him. His rehab doctor and orthopedist work together with Leiland’s Cerebral Palsy. They also keep check on his hips and his spine. Since Leiland does have about an inch different between his two legs. Cardiologist, we only had to see him one time to check Leiland’s heart and circulatory system.

The reason, I tell you all some of the stuff, definitely this is not all of it because when you think of Stroke, you don’t think of all these other things. You think of rehab and cardiologist, that’s it. But there is soo much more to it. Until about 6 years ago Leiland was seeing doctors constantly, when he was younger appointment were every 3 months. Now its once, maybe twice a year. I finally have him in a good place. His medication has gone down from like 7 medications to 3 plus an allergy medicine. He does have rescue medicines on hand just in case something happens. But he has come so far.

 When I look back from the time that I first saw him in the NICU to now and all of the hospitalizations, procedures, testing (there’s been A LOT), searching for answering, telling doctors to F off, I am in awe. I truly am. Leiland is a healthy, happy 16-year-old young man that has far exceeded what any doctor had set out for him to do.