Location:
Oklahoma City, OK
Birth story to age 1:
Miko was born full term via Cesarean, he weighed 9lbs, he had jaundice and issues latching on to breast and bottles. At 8 months he was found unresponsive at daycare and cpr was performed, x-rays at the children’s hospital confirmed he had aspirated. No other similar incidents ever occurred, it was considered an unknown event. By 10 months it was discussed with Mikos pediatrician that he had not hit any milestones. At 12 months he was referred out to soonerstart, an early childhood developmental program, where he recieved at home therapy. He could not sit unassisted, stand up, crawl, eat solids, say words, laugh, or hold his own bottle. Miko was diagnosed with a global developmental delay and failure to thrive as he fell of the growth chart. He started crawling and sitting unassisted at about 20-22 months of age.
Toddler age 2-4:
Miko started walking at 26 months, saying words other than mama and dada at 3 years of age. Miko continued aggressive therapies, at a center that specialized in Autism, Miko was tested for Autism there at the age of 3, and even though they he showed almost every sign of autism, they would not diagnose him because he was too social, they felt he had an intellectual disability but would not test for that intil after 5 years of age. Miko was referred out to a neurologist. An MRI confirmed Miko has a cyst on the left side of his brain, but they did not feel that had any effect on him, we were just told to look out for neurological changes to make sure it didn’t grow. He was referred out to OU children’s genetics, where they started genetic testing. The first 2 rounds came back normal, they were looking for deletions, and common genetic disorders. The 3rd round of testing, the parents were tested and they studied his DNA in whole and discovered the Stag1 genetic mutation, this was at age 3.5. At age 4 Miko started in a special needs head start at the John Keys speech and hearing center at the OU children’s hospital, where he thrived.
Child age 5-6:
Miko attends a special needs pre-k class in a public school where he does very well. He knows all his shapes, colors, letters, and numbers. He can spell most colors, recognizes his and his peers names written out, he can count to 20, recognizes all upper and lower case letters and is ahead of his class. His vocabulary is slowly growing, he can now put 3 words together to try and form sentences, but with a limited vocabulary, it is sometimes difficult. Miko is still not potty trained, and is very unsteady on his feet falling often. After years of therapy he can still not eat solid food, except for ice cream and nerds candy. He drinks a homemade formula that mom made up from 12 months to current (5.5 years), it is a yogurt consistency, and the nipples are cut into X’s, he will not stray from these particular nipples or even try solid food. Miko drinks about 7 bottles a day, around 60 ozs and about 1800-2000 calories a day, he is about 15th percentile on the weight growth chart.
Primary diagnosis:
STAG1, failure to thrive, global developmental delays, and intellectual disability.
Challenges:
Miko does not comprehend danger and has to be watched constantly, he will walk off the ledge of a big toy at a play ground, touch a hot stove or water etc. He has no interest in eating solid food, potty training or wearing his glasses (he has pretty terrible vision) he hates anything on his head. He is unsteady on his feet, he still walks with his arms out and falls often. He is scared of loud noises and gets very upset from loud unexpected sounds. Miko eats hair, he searches the ground for it and chews on it, we have to watch his PICA as it can cause stomach issues.
About me:
Miko is an incredibly happy boy, who is very affectionate, loving and curious. He loves playing and sharing with kids his age and cuddling with close family members, and hanging out with his older siblings. He is so smart and obsessed with letters, especially the letter “Q”, he likes to tell you what every letter a word starts with. He can be bossy, he knows what he wants, which is mostly tickled, he requests tickles all day every day. He loves ice cream and playing at the park which he calls “wee”. Miko is a very sweet boy who is loved by all around him, his smile is infectious and his sweet hugs will melt your heart.
