Logan really isn’t so little anymore!
Meet Logan! He is a spunky, funny, temperamental 5 year old! But gosh, I love this kid more than anything! He lights up any room when he runs in full force! He has my heart and everyone else around him!
4 years ago, when Logan was 18 months old, he was diagnosed with fibrous dysplasia. Here is the definition from Mayo Clinic. ( I urge you not to google it, it’s really not pretty!)
Fibrous dysplasia is an uncommon bone disorder in which scar-like (fibrous) tissue develops in place of normal bone. This irregular tissue can weaken the affected bone and cause it to deform or fracture.
Logan had this starting at the top left side of his skull. We were hopeful that this was the only location. 3 years ago, we noticed a bump forming between his eyes. So when he went to have his tonsils removed, they also did a CT scan. We had another appointment with our doctors in Madison at the American Family Children’s Hospital. They confirmed it was also another spot. At this time, we weren’t sure that they were connected or if they were separate. It’s rare to get this condition in the first place and it’s even more rare to have it in more than one spot.
Logan about 2 1/2 years old. You can see the bump on the top of his head in the early stages! But look how happy he is!!
We first noticed the abnormal growth on the top of his head when he was around 18 months old, maybe younger. We were referred to Iowa City. The doctors there were unsure of exactly how to treat it. They were able to diagnose it but wanted to operate on him at 18 months old and replace the bone tissue with metal. Nathan and I decided to get a second opinion.
Here you can see the bump beginning to form on his forehead.
For our second opinion, we went to Madison, WI with the American Family Children’s Hospital. They were able to get us in to see the doctors within one week of us calling. When we arrived there, we were so comforted there and truly felt like family. We met with both the Pediatric Neurosurgeon, Dr. Iskandar and the Pediatric Plastic Surgeon, Dr. Mount, part of the craniocynotosis clinic. Both are so wonderful to work with!
They even pointed out that he has brown spots on his back. We thought this was a birthmark, but they are called Cafe Au Lait spots and are a sign of carrying Fibrous Dysplasia.
Their advice on our first visit was to let well enough alone for now. That we would wait and watch to see what the bone wanted to do and where it wanted to grow. They advised that once we cut into the bone, it becomes aggravated and can grow even faster. So we waited. Thankfully.
The wait turned into seeing the bone grow into his forehead and between his eyes. This bump also made no room for his sinus cavity to develop on the left side. You can also feel a smaller bump on the bone above his eye. We have been closely monitoring his vision every 6 months with a Pediatric Ophthalmologist. So far, he has perfect vision!
These are the two CT scans. First scan was in 2015 and the most recent done in 2018.
Last day of Preschool Last Year! Crazy how much this kid has grown in one year!
Since his last appointment in October, the doctor’s recommended surgery to fix the sinus cavity. They have decided to shave down the bump between his eyes and around his eye, on top of his head and the vein on his forehead. No worries on the stitches in that area. They will make one incision on top of his head from ear to ear and work through that way. Try not to get a visual of that, it makes it seem so much worse!
The doctors are so confident that this surgery will go without any complications! They say it could take 3-4 hours. He will be in the Pediatric ICU for at least 1-2 days and another 2-3 days in a regular hospital room.
My sleepy boy!
So the date is now June 11th for his surgery. I have waited to post anything or announce anything until we had a confirmed date. The trouble with working with some of the top surgeons in the area, is getting a solid date to work for everyone!
The easy part will be the surgery and the hospital stay… or so I think. I think the hardest part will be when we get home and trying to keep a very active boy calm and sedentary.
As far as sessions go… I will keep everyone posted!
Please keep us in your prayers this summer!
“It is the Lord who goes before you. He will be with you; he will not fail you or forsake you. Do not fear or be dismayed.”