6th Grade

 I can hardly believe that Lucas starts sixth grade this week! I have not kept up with this blog in part. Because I am not very good about talking about myself. I feel like I am complaining when I share our struggles. I know that there have been milestones achieved and successes too. I needed the reminder of how hard far we've come from November 2011. My sister started this blog to keep family and friends informed of our situation in the hospital. It was her way of working through the details and the emotions of the time. Since then, there have been a lot of ups and downs with Lucas and I find myself trying to reconcile the battles of today with that time. 

Lucas has ADHD. He struggles with school and social relationships. He is on an IEP and in special education. some of the comorbities tied with ADHD are there - rejection sensitivity disorder, he is oppositional at times. We have struggled with his peers and even adults accepting his quirks. He is pretty self focused and struggles with sympathy- but can also be very caring at times. 

We are in the full swing of puberty and he is almost as tall as me. Last year was the year of braces, introduction of anxiety meds and growing like a weed. So many normal things happening mixed in with the ever present reminders that Lucas is neurodivergent. Camp was a struggle, just like school and daycare always has been.  He is so wise and also so immature- it is a very confounding balance!

It's hard to explain on bad days to others how blessed we are he is here. I love my son more than anything.  He is my greatest joy and frustration and love.

20 Month update

My son has made amazing progress in the last year. I have not posted for many reasons, but I thought an update now would be nice since all the activity is picking up again. Lucas is almost two years old! Time has flown by, as usual, and he is hitting new milestones all the time.

To date, Lucas still requires a feeding tube to take in most of his nutrition. He has overcome aspirating liquids - for a while now- and can drink without thickening through a sippy cup, straw or regular cup with assistance. He does eat regular foods as well, but still not nearly enough to get the calories & nutrition he needs. His favorites foods are green beans, chicken, pizza, spaghetti and his Gerber puffs. He also likes cookies and ice cream of course.We are currently working him up to a 1200 calorie diet since he hasn't grown very much in the last 4 months and because he's older so needs more.

Lucas wears Trust Orthodics braces during his waking hours to assist with stabilizing his ankles and feet. They have helped him bridge the gap to walking and he has already taken several steps on his own - even without the braces. We are working on getting him to shift his weight forward for better balance. He does like crawling up stairs, but hasn't grasped how to come back down yet.

He had several upcoming appointments including his eye exam yearly check up, follow up with the geneticist, and an appointment with a clinic at Childrens Hospital that assesses ongoing needs and places children with the right specialists.  Lucas still sees a physical therapist from both the daycare & OPS, but we might be switching to the OPS teacher soon. There is also a good chance that soon we will be reducing or eliminating they daycare time due to a change in our tuition assistance coverage.

Our focus with Lucas now is working on his language and cognitive skills. We want to make sure he is meeting all milestones associated with these areas. He is already using words like Up, No, Go, Ball (ba), cracker, popop, mommy and dada consistently. We have heard him say other things, but only once or twice. He also says please, thank you, (more)  in sign language. He enjoys trying to figure out how things fit together or plug into stuff, so we have to keep an eye on him around the TV or power outlets. I'll try to update more often with pictures and videos, but updates to FB are more frequent if you'd like to check his progress.

Thanks all

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.

Appointments, appointments

Lucas is still doing well adjusting to his home life. We started daycare at the Children's Respite Care Center which specializes in children with physical and mental development issues. Its one of the few places that will feed Lucas using his g-tube and luckily, Medicaid pays for it until he's one. He's still not eating half or more of his food orally (by bottle) most days, but when he eats, he's doing much better at not choking and we've gotten him to where he can eat breastmilk without the formula mix without choking. He has had some crazy spit up moments, like today when he spit up 5 times within 2 hours, but we've been lucky too that he hasn't had a fever yet or any infections.

At his last doctors appointment, the doctor said that Lucas hasn't been gaining enough weight. We increased his feeding volume again to get him more calories. We hope to get his weight gain under control soon so we can start introducing baby food. She said there is a small window for preemies to get them eating baby food before they start having issues accepting new textures and tastes so we want to start that very soon. Lucas got his 6 month vaccinations at this appointment too, which went better than I thought. He screamed for a few minutes and then went to sleep!

We have several appointments coming up. He has an appointment with the feeding specialist, the surgeon to check his g-button and see if he needs a bigger one, the bone study to measure his arms and legs,  the development evaluation with the Omaha Public Schools developmental network program, ophthalmologist apt. and the appointment with the geneticist to read his bone study. On top of that, we have mommy appointments, daycare scheduling, holidays and birthdays.  I think that the two things new parents should know is A. you will be tired for a long time and B. You will always be running around -- and yet, not burning more calories than before! Its still worth it :)

new pictures

Momma, Privacy Please

Hi Cheryl!

I'm sleepy sleepy

adjusting to home

Lucas has fit right into our family over the last two weeks. He has been sleeping and pooping and crying like a regular baby. His eating is getting better in that he doesnt choke very often and he's breathing while he drinks from the bottle like normal babies do, but he still only attempts to eat 2-3 times a day. When he does eat, he takes 1/2 to a whole bottle which is good. His g-tube site has healed well and our follow up is with the surgeon on Tuesday. They may replace his tube with a fresh one which is just a little more complicated than changing a belly button ring... So, not too bad. The doggies are a little jealous of the attention - mostly Suka, but are also enjoying being let out in the middle of the night. They don't mind his crying at all. We have taken our first walk, first zoo trip, a few baths at home. Lucas is still gaining weight and doing well. We see the pediatrician tomorrow to see about changing his feeding volumes & maybe formula, but nothing major. Lucas has been a bit fussy, but we think he's just growing. We won't be updating the blog as often because our hands are full and there isnt as much to report, but as we get updates on eating, eye doctor and skeletal survey I will post. Most likely it will be mainly pictures. Skeletal Survey- June 18 Optomologist - July 5 Genetic (review of skeletal survey) -- July 16

happily exhausted

Weight: 10 lbs, 10 oz Length: 21.5 inches We've made it almost 3 full days! It feels great to have Lucas home and to avoid going to the hospital to visit him. There's this fulfilling aspect of taking care of your child all by yourself! We've had one nurse's visit, met our pediatrician- very nice lady- and have been signed up for WIC to help get the specialty formula Lucas needs to gain weight. They did their charting and show that Lucas is in the 10th percentile for height and 25th percentile for weight for other preemies his corrected age. That means he's smaller than most other babies his corrected age (two months). But, when comparing his length to his weight, baby Lucas is considered a healthy, chubby little dude. He has been spitting up with every feeding but the doctor said she wasn't concerned because he is still gaining weight and he's not choking when he does it. Lucas is also sleeping a lot and starting to tell us more often when he is hungry. He is still only eating orally four times a day, but usually takes at least half the bottle when he eats. Mommy and daddy are definitely getting less sleep because even if Lucas doesn't wake up during the night, we still have to feed him every three hours, but in a few weeks, we can start working on getting Lucas to take more of his food while he's awake during the day. Our next appointments are with the surgeon for followup on the g-button and the feeding specialist on May 8, then the pediatrician again on May 11. I'm back to work next Tuesday with an adjusted schedule to allow me to work from home. Brandon's mom will also be helping watch Lucas for the next few weeks. I may take advantage of some nap time in there since getting off at 11, doing the 12 AM & 6AM cares will wear me out fast. Thanks again for all the well wishes. Its all coming together now!