July Update

Lucas had his eye doctor appointment and his geneticist appointment. The retinopathy of prematurity is completely gone and his vision looks great. The next appointment is in September. The Geneticist said that Lucas does not appear to have the form of dwarfism called Rhizomelia. She believes that Lucas may have a condition known as hypochondroplasia that runs in families. Apparently, she believes I have it too and that I have passed it onto Lucas. However, if this is the case, we have a very, very mild form of it as we don't necessarily fit the description. At this point, the best way to tell is for me to go in and get the full body x-ray like Lucas did to have my bones measured. The only obvious indication is that my pinky fingers have only 1 crease where the joints bend, where most people have two. She stated that these diagnosis are more easily made in adults because the bones are done growing. The other option is to wait until Lucas is two and perform another scan. I personally do not believe this is the proper diagnosis because Lucas and I both appear to be proportionate, though shorter than possibly we should be.

On the eating front, for the last month, Lucas has been refusing to suck on the bottle or take oral feedings of his formula. We have started on level 1 baby foods to introduce new flavors and he seems to be taking them well. He doesn't seem to like it when we give him a taste of new textures like a small piece of hashbrown or cupcake. He reacts like we're sticking a worm on him! Hopefully as he gets older, this will get better. We continue to work with a feeding therapist at the daycare. He also now has a physical therapist through the daycare and is enrolled in OPS. OPS provides a program called the Early Developement Network that helps kids with learning challenges. He has a physical therapist and occupational therapist through this program. The hardest part about that is remembering all the appointments & keeping the house emaculate for the home visits.

Lucas has outgrown his 0-3 months clothes for the most part and is now working on the 3-6 month stuff depending on the brand. We're working on tummy time- lifting his head and trying to get him to use his arms to push up & sitting up time in the bumbo chair. Lucas has a significant gross motor skill delay and we're hoping with work we can improve this. So far he's making great growth progress. He reaches for objects, tracks objects, smiles, even laughs now. He knows his mommy & daddy for sure!  He has his own way of talking that is just so cute! Love my roo bear!!!

 

What is hypochondroplasia?

Hypochondroplasia is a form of short-limbed dwarfism. This condition affects the conversion of cartilage into bone (a process called ossification), particularly in the long bones of the arms and legs. Hypochondroplasia is similar to another skeletal disorder called achondroplasia, but the features tend to be milder.
All people with hypochondroplasia have short stature. The adult height for men with this condition ranges from 138 centimeters to 165 centimeters (4 feet, 6 inches to 5 feet, 5 inches). The height range for adult women is 128 centimeters to 151 centimeters (4 feet, 2 inches to 4 feet, 11 inches).

People with hypochondroplasia have short arms and legs and broad, short hands and feet. Other characteristic features include a large head, limited range of motion at the elbows, a sway of the lower back (lordosis), and bowed legs. These signs are generally less pronounced than those seen with achondroplasia and may not be noticeable until early or middle childhood. Some studies have reported that a small percentage of people with hypochondroplasia have mild to moderate intellectual disability or learning problems, but other studies have produced conflicting results.