22 Month Milestones and sleep apnea

HE CAN WALK!!!! Ethan finally took some of his first steps this month! Just before this, he started sitting to standing with no assistance! 12 steps in a row is currently the record.

EATING/DRINKING
We have been working with him drinking from a straw because it is recommended to help kids with low muscle tone build the muscles while drinking from the straw. We tried to no avail with the Honey Bear cup, and then we finally found some thicker “Bubba” straws thanks to a few friends who recommended them! Ethan has done pretty well with them so far. I ended up ditching the cup for the time being and just sucking some into the straw myself, holding the liquid there, then offering the straw to Ethan. We’ve had to take a break from practice because he is really congested right now and is less interested in eating in general during the course of his cold.

Ethan has been eating bits of cheddar and is in love with pretzels. Still mostly pureed..we have been told we should be thankful for the variety he DOES eat, though, because some kids eat only puree or have feeding tubes for a long time. Every kid is different, its just about celebrating the steps they make and knowing you are trying your best for your kid and to be content in that. 🙂 But don’t get me wrong, we do try to push for the highest potential in Ethan and his interventions. Still..being content is something I’m allowing God to work on with me, and that includes where Ethan is in his development.

SIGNS: Newest ones are “book.” ( he is in love with his books.)

table, cold, again, down, etc. I really can hardly keep up he tries out so many new signs. We usually watch a little Signing Time (on DVD or some newer ones on Netflix) or Baby Signing Time each day and I sign along with everything I say to Ethan. We also have an I Pad “Baby Sign” ap. Honestly, the biggest help is doing signs as you go though, I believe.

OTHER COMMUNICATION and MEMORY RECALL: signals “I love you”, not ASL, but a special signal his Daddy taught him. 🙂 points to chest, then to us. Ethan’s memory seems to have lengthened quite a bit..he will recall games we play or words from a song. If I leave off a lyric, he will sign the word that comes next even if I wasn’t signing at all in the first place.

FLASHCARDS: This sounded really early to me when I first heard of people having toddlers use flashcards, but it is especially recommended for kids with Down Syndrome to learn whole word language through flashcards first. (I am not the expert on that, but this is what I have gathered from talking to parents and researching programs online.) I want Ethan to already recognize several words when he enters kindergarten so that he has that boost of “hey, I can read!” while he works on whatever methods are taught by the time he enters school (right now it is phonics, I believe, just as when I was in kindergarten.)

We are using flashcards i made from cut out magazine pictures or drawn symbols to accompany the words themselves. Ethan recognizes the “banana” card as well as the “up”, “down”, “ball” and “cheese” card. He only needed a word prompt for “cheese” as of yesterday out of the above mentioned words. We do not drill on it all day, maybe once per day at most. I have read that going through the cards quickly is the idea in working with kiddos with DS so as to keep their interest.

FIRST TIME IN “SUNDAY SCHOOL”
Because of Ethan’s sicknesses, quarantine before and after heart surgery, flu season, etc. , we had never left him in a church nursery until a few weeks ago. He went to a toddler room at a “megachurch” as many would call it, so there were upwards of ten other toddlers in the room, who could all walk pretty well from what I could tell. I was concerned Ethan would be overwhelmed, but he signed “please!” to me to go into the room and tried to open the doorknob so he could go in and PLAY! I hid around the corner then peered in to see how he was doing, and he was already standing and trying to walk toward another child. It did my heart good to see how much he enjoyed himself. The Sunday School worker said that he was “like a pro” and only cried when I came to pick him up. 😉 We’re hoping to slowly work him up to being around more and more kids at once. Hopefully he will be ready to join a developmental center next summer when he is 3 years old.

OUTPATIENT THERAPY CENTER
Ethan had been receiving all 3 therapies in the home, but he now goes up for his 3x week PT and 2 x week speech at the center, meaning he is having more exposure to other kids. I think its been good for him.

POTTY TRAINING. He goes “pee” in the potty every time he is put on the potty…I mean every-time. He still hasn’t signaled for us to take him, therefore we bought some cloth diapers to save money in the meantime because we think it could be a bit before he is fully potty-trained. He’s got Cars, Pirates, Monsters, (from Sunbabydiapers) the works on boyish diapers. Going really well so far!

ABOUT THE SLEEP APNEA..

First of all, I will share a link from a website that is a great resource on all things Down Syndrome because they have done all the research and word things so well, whereas most of what I write tends to be more reflective of our experience (although I will share some info along the way..)

Information about what sleep apena is and why people with Down Syndrome have it so frequently:https://www.ndss.org/Resources/Health-Care/Associated-Conditions/Obstructive-Sleep-Apnea–Down-Syndrome/

Since Ethan has had a pronounced snore and has some difficulty oxygenating at night while in the hospital for RSV this season, he was scheduled for a sleep study. At the sleep study, there were wires all over, and he had to sleep on his back. He also had to sleep with these pediatric arm weights/restraints. Not very conducive to sleeping, but he did end up falling asleep for 6 hours.

A few things you may want to know if your kid is getting a sleep study (at same hospital as us, if you know us personally you know where..)
1)Its VERY cold.
2) Your kid may need restraints if they're young.
3) If your kid has an early bedtime, say 7:30, they will not get to bed on time at the study.

It was found that he has mild sleep apnea (They measure obstructions, oxygen saturations, and things of that nature.) We are waiting to hear for sure from the ENT since that is who will make the "call" on getting his adenoids out, but his pulmonologist (lung doc) said she thought the ENT would probably choose to have Ethan's adenoids, and maybe tonsils, removed. This should help with the apnea as well as swallowing issues (although I do not think it will completely get rid of the issues from what I have heard.) He will go to see ENT at end of June, so we will see for sure at that point! Adventure, adventure.

Exciting months ahead, though! Baby BOY cousin on the way (Ryan's bro's son) as well as the big "2" for Ethan!

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3 thoughts on “22 Month Milestones and sleep apnea

  1. My 14 year old daughter with Down syndrome has moderate sleep apnea, and we did the tonsil and adenoid surgery which did not help as expected. We are trying to adjust to a CPAP machine. Hopefully you will have better results! Good luck!

    • Did she get the CPAP after the tonsillectomy? Honestly it was hard for me even tell Ethan had sleep apnea..he didn’t wake up crying, just changed breathing patterns. It was mild though. Thanks!

      • Yes, we started the CPAP a year ago. She had the adneoidectomy at 5 and PE tubes in her ears, and then the tonsillectomy at 10. Each time the snoring would improve, but she would still wake a lot at night and wander around the house. She has always been a very restless sleeper (when she would crawl into bed with me, I felt like it was comparable to sleeping in a running washing machine). The final reason we tried CPAP was that she was tired and cranky at school and would sometimes fall asleep in the afternoon. Her sleep studies showed significant disruption in her sleep patterns- she would never get into deep sleep. The CPAP has helped greatly, but it is tough to get used to. We are having some problems at the moment getting her to wear it, but before this recent difficulty, it made all the difference in her attitude.
        Hopefully your little guy’s surgery will fix the problem- it does in a lot of kids. Because my daughter has the AA instability of the neck, we had trouble getting her O2 numbers up and had to spend a few nights in the hospital, so be prepared for that.

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