14 Month Milestones and New Therapy Gear

MILESTONES- Ethan has sat up on his own (gotten into sitting position) and has pulled up this past month. His favorite thing to pull up on right now is the bathtub because nothing excites him like bath time! He loves splashing!

FUNNY HAPPENINGS-Ethan is enjoying licking the floors (he move his head back and forth with it..yeah, he really gets into it haha!) He is also getting to that age of ending up with mystery objects..paper, bandaid backings, velcro, etc…in his mouth even when I am standing right over him! I only saw he had been storing wet paper on the roof of his mouth because I laid him back to change him and thought, “Oh, is this a new tooth? Ugh, no its PAPER!”

THE DANGER OF UNDERESTIMATION

I know this is probably true for any toddler/young child, but sometimes having a child who is developmentally delayed can be as risky or even more risky that full-blown “toddlers” who can walk around and demolish a room in a single bound. What I mean by this is caregivers’ or other adults’ level of expectation may be less than what the child can actually do. If I think my child has “a ways to go” based on what I have observed or what has been noted in therapy sessions, I may not think he can pull up on something. WRONG.

An awesome Rhea Lana Consignment Find! Musical V Tech playstation with English and Spanish. Love it.

An awesome Rhea Lana Consignment Find! Musical V Tech playstation with English and Spanish. Love it.


It may be my lack of noticing details and just enjoying playing with Ethan day in and day out, but it seems like he will struggle greatly in an area for awhile then all of the sudden, BAM, he is an expert at pulling up, sitting up, or whatever the case may be. He is also a LOT stronger than we what he sometimes lets on. He will squirm around like any toddler, but then if he decides he wants to go after something, I will go from holding Ethan’s entire body securely on my hip to only holding onto ONLY Ethan’s hip in two seconds flat! Even when he was a lot younger, he would “buck”in people’s arms randomly and it was even hard to hold onto him back then!

BEYOND THE BLOOD TEST

Below is a list of things we are experiencing with Ethan’s healthcare or therapies at the moment, which I discuss not to ramble or complain but rather to educate and explain what has been going on to assist parents and families, or anyone who would like to know what sort of things to expect to be part of raising a child with Down Syndrome. Here we go with this month’s adventures..

THERATOGS- We did receive the Theratogs,and I can say with only a little practice, is that it took me about 3 minutes to REMOVE! Wow! It is a jumbled mess when it is off.Ethan doesn’t seem to mind them, but he DID take an extra 1 1/2 hour nap the first day he wore his Theratogs. The pamphlet from the company mentions it begin comparable to 50 hrs of PT per week (or something similar to that.) Theratogs are supposed to prompt Ethan to use his muscles more as he has low muscle tone (along with others kids with Down Syndrome as well as children with autism.)

Trying on Theratogs for the first time

Trying on Theratogs for the first time

PEDIATRIC DENTAL VISIT- He had his first one this past month. The dentist said that Ethan’s teeth, “look great…most kids with Down Syndrome have a cone shape to their teeth. Ethan’s are somewhat jagged here, but overall they look great.” YAY! That was great to hear. I will be watching for future teeth and highly recommend getting children’s (especially children with Down Syndrome) teeth looked at early on due to special considerations for dental issues in children with Down Syndrome.

Cheesing after his first dental appointment holding his goodie bag.

Cheesing after his first dental appointment holding his goodie bag.

-HONEY BEAR CUP Something we are working with Ethan on again now is drinking from a cup with a straw from what is called a “Honey Bear Cup”. We were given one at Ethan’s Medical Home Clinic (The Children’s Hospital multi-disciplinary doctor’s clinic-for kids with multiple and serious medical issues) through the Talk Tools company that has presented at the hospital before. The reason parents of kids with Down Syndrome swear by the Honey Bear straw cup is that it encourages proper placement of the tongue, whereas sippy cups typically will cause tongue thrust/protrusion. (By the way, kids with Down Syndrome aren’t the only ones who can have tongue thrust to a certain degree. I actually had to wear a special tongue trainer retainer in middle school because I had a tongue thrust when eating and drinking. My parents didn’t know that is what was causing my gap teeth because I kept my tongue in my mouth..I just thrust it against my teeth! FYI in case your kiddo is having some dental/orthodontic issues. You may want to pose this question to your child’s dentist/orthodontist.)

We tried the Honey Bear cup to start with and thought we weren’t seeing much progress (although that was probably us being impatient. He DID try to drink from the straw. It was just messy and he wasn’t sucking it up for himself yet.)

http://www.talktools.com/honey-bear-w-flex-straw/

-EAR INFECTIONS-For those who are not aware, children with Down Syndrome are more likely to get recurrent ear infections than most due to their smaller ear canals. Today was the 3rd doctor’s visit confirming some degree of ear infection and subsequent antibiotics. If he gets ear infections frequently in the winter, we will look into getting tubes placed.

-SLEEP APNEA-I have read that about 40% of children with Down Syndrome have some form of sleep apnea. This is on my mind recently because Ethan has been snoring more lately (even before he got the ear infection.) I know a child who had to take multiple naps and could sleep even when other kids were playing around him. This might be a tip that your child needs a sleep study. Ethan sleeps around 10-12 hours then takes two 1 1/2 hour naps. (and more with Theratogs apparently). I am still trying to find out how “normal” that is. If the snoring continues, we will be asking about a sleep study.

-POSSIBLE VERTEBRAE ISSUE–FORWARD FACING CAR SEAT-Ethan is still a little too small on the weight end of things to move onto forward facing carseats, but I am concerned about forward facing because Ethan has yet to get an x ray of his neck for a possible issue with the vertebrae not being structurally correct, which could cause paralysis in the case of whiplash. It is somewhat rare for children with Down Syndrome from what I am told. The doctor told us, “We usually do that when someone joins a Special Olympics team”. What I am concerned about is a car wreck…it seems like that would cause more of a shock than a contact sport would, and from what I have been told, forward facing may be more of a risk with this type of structural issue. (I haven’t gone into detail with a doctor about this, so this is speculation. I am just thinking next on my to do list is telling rather than asking about an X Ray. A good friend suggested telling doctors what you want addressed, rather than asking in cases like this.

MORE ALIKE THAN DIFFERENT

Again, I do not ramble about theses concerns to be a worrywart, although sometimes I can be just that. These are a checklist of sorts for me to go back and say what I have found about them, what I know about them thus far, and how they effect my child and my family. I just never knew how much increased risk or how much commonality (as well as variance!) there is among the Down Syndrome population. I have heard “Kids with Down Syndrome are so loving”, “Kids with Down Syndrome can be pretty stubborn”, and “Kids with Down Syndrome are picky eaters”, “A lot of them have sensory sensitivities.” I was just blown away to hear all the things our chromosomes can effect our characteristics. If there are 3 copies of the 21st chromosome in every cell of their bodies, however, I guess it makes sense that so much would be different from the typical person’, as well as cause commonality among people with Down Syndrome..

However, it is equally amazing and beautiful how DIFFERENT from each other children with Down Syndrome are and how ALIKE they are to…well, anyone! Ethan is way into bath time, while other kids might shriek at water splashing, but Ethan sure likes going to what he SHOULD NOT (power cords, air vents..) just like ALL toddlers.

Just getting in the Down Syndrome Awareness Month spirit early, I suppose! (October is Down Syndrome Awareness month. Look on the National Down Syndrome Association’s website to find how to participate in a nearby Buddy Walk to show support!)

http://www.ndss.org/Buddy-Walk/

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