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Letter to Leo

This post is long overdue as far as catching you up on how Leo has been doing. I believe the last post I did was nearly a year ago. Now Leo is two-in-a-half and we can’t keep up with how fast he is growing. I am going to first give a brief update on how Leo is doing in a few key areas of his health and then I am going to attach a poignant narrative my dad wrote about his experience with Leo having a laser treatment.

First off, if you are new here I would like to say thank you for taking the time to read my post and getting to know our family. Let me give a brief background...our son, Leo was born with a large port wine stain that covers the left side of his face and we learned at birth he had Sturge-Weber Syndrome. Sturge-Weber Syndrome is a rare disease that presents itself with a vascular birthmark (port wine stain) and can cause neurological abnormalities, eye abnormalities and skin abnormalities. Since Leo was about five days old we have taken him to countless doctor appointments, he’s had multiple eye surgeries, 32 laser treatments and has been on preventative medication. We learned at 3 months of age that Leo in fact had brain involvement and glaucoma; both due to the added pressure from the enlargement of small blood vessels; which causes the birthmark. We consulted with one of the top neurologists who specializes in Sturge-Weber Syndrome and seeked guidance from her as to what we need to do. We quickly learned that getting him on preventatives right away was very important. The likelihood of Leo having a seizure by the time he turned two was about 90%. We didn’t hesitate to move forward with putting him on medication to help decrease those chances. Due to SWS being a progressive disease we knew we needed to act fast with everything. We then met with an ophthalmologist to see how Leo’s eye pressure was when he was about one week old and we were told that his eye pressure was high and that he had glaucoma. I didn’t even know what glaucoma was to be honest, so it was really hard for us to learn about all of this and understand what was going on with our sweet little boy. His ophthalmologist told us that we’d need to get him on some eye drops to hopefully relieve his eye pressure and to come back for frequent visits to check the pressure. Lastly, we needed to see a dermatologist about the port wine stain and to do laser treatments to help remove and lighten the stain. Again, when Leo was five days old he had his first laser treatment and we continued to go back every two weeks for more.

Now, here we are two years later and we are so happy to update everyone on how well Leo has been doing. As you read, the likelihood of Leo having a seizure by the time he was two was 90%, so by the time Leo had his second birthday we were pretty on edge with things. Being very watchful of his behavior and doing MRI’s and EEG’s we wanted to see if there was anything abnormal. Praise God he has been seizure-free. He has come so far and has met all his milestones from speech to motor skills. His neurologist has suggested to us that we keep him on his preventatives until he turns five years old and then we will reevaluate from there. We will also have more research by then on how other children have been doing and can hopefully make the right decisions whether or not to slowly taper him off the medication or to just continue. His dosage will continue to increase as he gets older but he will just stay on the baby aspirin and trileptal (anti seizure med) for now. There will be no more need for any MRI’s, EEG’s or any evaluations unless we notice any abnormal activity. He does see a pediatric doctor normally to make sure we are on track with everything and he also sees a local neurologist on occasion.

Leo also sees his ophthalmologist about once every few months to check his pressure and make sure the shunt he placed in his eye months ago is still helping relieve the pressure (see past post). When Leo was a newborn these checkups were much easier since Leo would mostly sleep. His doctor was able to really look in his eye without scaring him too much. However, now that Leo is older and way more aware, oh and STRONGER it’s a little more challenging. Because of that we have to do more exams under anesthesia. That’s been a little more difficult for him because he somewhat understands when we go to the hospital that it’s not a fun trip. Plus he can’t eat for a long time and our boy loves his food. When he wakes up after anesthesia he isn’t the happiest and has a hard time relaxing. When we are there with him it makes it hard to calm him down and sooth him. Thankfully once we get him out of the hospital he’s happy to be heading home. Leo will be having an exam under anesthesia next week, and I will let everyone know how he’s doing. As of today he is on his normal eye drops twice a day and still has his shunt that helps his pressure.

I would say the most I get asked about with everything are the laser treatments and how they have been going since Leo was younger. We wanted to do as many treatments as we could while he was still young so we decided to stop when he turned one and then we’d give it a break. Several months ago we started back up again. We wanted to see our dermatologist to consult with her as to what she thinks we should do. Port wine stain never fully goes away, so we knew that this would be a process possibly for the rest of his life (if he chooses). After consulting with his dermatologist we all made the decision to start treatments again and see how it goes. Being that Leo is older we all knew it was going to be much more difficult. Our dermatologist does not do laser treatment under anesthesia and I get asked why a lot. When they are fully awake the blood rushes to the surface allowing the doctor to use the laser machine more efficiently. It can attack those capillaries easier if someone is fully under anesthesia but then it’s not as effective. There are also other helpful ways of going about it without anesthesia that Leo’s doctor wanted to try. Once we decided to move forward with treatment again my dad asked if he could come with me and possibly be in the room with Leo while they do his laser treatment thinking it may help. I was really surprised by this because I can’t even be in the room; it’s so hard on my heart and the doctor usually doesn’t recommend it. However, it brought so much comfort knowing that Leo may like Papa being in there with him. We called the office and they said that it would be fine for my dad to stay in the room to help. They prescribed us some numbing cream to put on Leo's face before treatment to hopefully help. I am going to stop right here and now attach my dad’s narrative that he wrote about his time with Leo during the procedure. We have now done three treatments with my dad being present with Leo, and I think his short account will bring comfort to many. Grab your tissues though, because it will melt your heart…

Leo’s Laser Treatments with Papa

My grandson, Leo Joshua, was born with port wine stain covering half of his face. Because his stain was remarkable, he was also diagnosed with Sturge Weber Syndrome and glaucoma. Since birth his parents, my daughter and son-in-law, have been able to provide laser treatments to his face to help lighten the stain and to prevent skin clusters from developing. Leo has had 32 laser treatments and I’ve been able to be with him during the last three. His mother and I go to the laser clinic together and she waits in another room while I carry Leo into the procedure room along with his doctor and two nurses. As soon as I place Leo on the treatment table he begins to cry; he knows what is coming. I am at the foot of the table holding his legs down while the medical staff gently restrain him and the doctor places an eye cap over his left eye and an eye patch over his right eye. With no sedation, the treatment begins by firing off lasers over the areas that are the most noticeable. The laser feels like a rubber band being snapped on your face; it hurts. Leo is screaming and trying to get loose, but he can only try to move his head side-to-side. I’m having to hold his legs down firmly because of the strength of this little two-and-a-half-year-old. As he is crying loud and resisting the treatment, he cries out, “Papa, Papa,” and my heart melts and tears start to flow onto my face mask. I say to him, “I’m here ‘Bud’ and we’re almost done.” Leo then starts saying, “Done, done,” and the doctor says, “We are almost done.” During these few minutes of intense treatment and Leo crying out to me, I was reminded of how Jesus on the cross cried out to his Father, “Father, why have you forsaken me?” But Jesus had already said “Not my will, but your will be done.” How true that is even for Leo, not wanting the treatments, but ultimately, he will appreciate them for diminishing the stain. After the procedure is over, the pain stops, and Leo looks up to me with open arms to be held by his Papa and he says, “I did it.”

Papa Ric

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