Changes for Ethan and our sanity

I don’t even know what this is going to look like since I opted to skip pen and paper journalist and I have had so much I have not fully processed because I’m taking care of kids/working and chugging along, but I knew I needed to journal by typing or pen and paper (cuz I’m way faster at typing than pen and paper writing, so here we are.) And I like to share some things because its hard to have time or the words on the spot in family gatherings and attempts to talk with friends. Because of all the things I am going to share is some of the reason I might come across as flaky or inconsistent in trying to make or maintain friends although traditionally I have been pretty great at that (ha)

So here we go…
What I thought was a short-term journey of getting Ethan to get “a little older and stronger…to school age” etc. has become more clearly not quite as short term as I had thought and hoped. He gets hit just as hard by illness and as we were told in May by his pulmonologist (lung doc/APN) his lungs are like “preemie lungs” basically. This to my understanding is mostly due to him being on a ventilator for a month as a baby (7-9months old in hospital). I used to say I don’t think I have PTSD, even a little bit of the characteristics (and I mean real PTSD because Im a therapist for those who don;t know, so I generally don’t throw out diagnosis labels like slang) but more and more I feel like Ethan’s illnesses and anxiety revolving around it have gotten to me more than I thought. For example, I was at orientation and doing a half day of CPR like I have for other jobs in the past, even in NICU before we could leave with Ethan we had to do CPR. Never have I felt I had to look away, have my heart beating fast, or start to cry from watching a basic, poor acting and low budget CPR video.

I am still positive and feel like overall he will do well, but it is really overwhelming to know its no longer an “if” Ethan will get hospitalized (and not just an overnight trip either. We are talking a week ast least, even with home oxygen available for the tapered oxygen end. Which is now up to 3 weeks overnight when he has a basic cold, by the way.) Those hospitalizations usually involve a stay in ICU sometimes for his history but they actually said they (experienced Picu nurses) were worried he was going to have to be put on a ventilator a few weeks ago…at age 5! for RSV! That illness is usually nothing for older kids and we were told he is so inflamed he could have another bad round if he were to get it in the next 3 months (or something like that…all that information swirls around in my head especially because I am getting it all by text and conversation usually since I started a new job.)

BALANCING GAME
So here we are, trying to find a balance with Ethan’s social, educational, and medical needs (and survival) It is not us being dramatic but rather doctors telling us he does not need to be around kids with snotty noses or coughs. Well if you have ever worked in group care or at a school you know that is basically ALL winter. Last time a lung doc told us she thought he needed to be at home until he is older because of illness, we decided that if we were near a children’s hospital, we would take the bad in with the good so he could be in school/preschool while he gets therapies. Well after that scare in ICU and what even more lung docs with varying degrees of conservatism, we decided if that many of them all agreed he doesn’t need ot be around it, we would do what we could to get him to be in school in hte spring and summer (for prek) and homeschool in the winter so he wouldn’t be in a hospital as frequently. (He has not had therapies in quite awhile because if you get inpatient therapies but you don’t feel your kid is well enough to do so much being around other kids, you don’t get therapy. Which is fine, that is how it is set up. But as it stands, he is already missing a lot of school anyway from being sick and missing therapy. Sitting in a bed and suffering by feeding tube placements and suctioning. Yep it literally and figuratively sucks.

So what a crazy notion-When you think about parenthood, you aren’t thinking about how you will have to decide “If I take my kid to church, is it going to make it so he’s still hospitalized from a cold he got and we can’t go out of town to celebrate our anniversary in two weeks?” or worry about germs from Communion ( I know that’s bad but guys this is what it has done to us…) We try to not worry and everyone says don’t worry, pray, and be happy (ok not really but its like the song. 😉 ) I do believe God has reasons for things. But man this kid and our hearts have been through a lot. I do think that’s one reason Ryan is an RN. If it was up to me, there were times I would have waited to take Ethan to the ER or not gone at all. Or Ryan had to fight to get better treatment for Ethan at the hospital because he was being overlooked or the seriousness was not realized then lo and behold, he was deteriroating and needed a transfer to higher level of care. (The hospital is wonderful overall, but you do have to be on your toes as a parent at any facility.) I can watch for the signs but I’m just saying I think that is God watching out for Ethan by his Daddy being an RN, with lots of ICU experience at that.

ETHAN’S BEDROOM/WARD
I say ward because his room is getting to look more and more like a hospital room. Not be all doom and gloom because I am SO very thankful we have those resources. It has shaved off a day or two or more of hospital stays that he can have up to 2 liters oxygen at home (usually just overnight with colds). So while that sounds great, the flip side is this-you hear the alarms go off while you’re asleep/trying to sleep. Your kid is only 5 and likes to rip the pulse ox probe off his toe, so largely Ryan is forced to lie down with him overnight or ast least to get him to sleep. And I know that a lot of parents do that anyway, but trust me being able to choose whether to do so and have no choice are two different things. So our schedules have often been different so we can adequately keep up with Ethan’s needs and when we are both at home, we might not even share a bed for the greater part of a few weeks because of all this medical stuff. Also it went out the other day so we needed a new cord.

Another thing that might be making his room look a litlte more medical ward-ish is that Ethan might be getting a g button/tube /feeding tube whatever he ends up getting or you call it. He basically is very under height and under weight and he is scheduled to get tested for a growth hormone deficiency, but since he is also not drinking much at all (because super thickened liquids are nasty and like pudding and hard to handle…) he is chronically dehydrated and putting in a tube might be a better choice than jumping to testing, although endocrine has followed him for over a year and recommended it. It may be that malnourishment is just a simpler answer to his lack of growth problem. I cried when a doctor first mentioned it, but there ought to be a way he can still eat food but only get liquids by feeding tube. That would be fine with me at this point. We need him to grow so his lungs can grow well and he can heal and hopefully have a more inclusive life all year long. If me or ryan seem to change our minds about things we attend or don’t attend with Ethan please understand we are not being flaky and we are just trying to do what is best for him. Sometimes that might change based on what we know or even what we feel. We try to think of what Ethan would want as well since he doesn’t talk a whole lot. I know kids shouldn’t make those choices but you do think about that some when it comes to 6 weeks of hospitalizations or doctors’ visits per winter vs one per year. He likes school but he likes home too and he has become very anxious about the hospital. So much so he screamed when i showed him a little girl’s picture because she went to his school and she got sick and was even smiling in the picture. the yellow hospital gown scared him and the bed and oxygen tubing . He knew where she was.

Ok this is really just venting and like purging, really, but I don’t care. Another thing that is so hard is every hospitalization is a battle, some more than others, to get staff to listen sometimes. They are good at their jobs for the most part, and some know to go with what we say because we know our child best-but because of delays or people not listening to us, he gets painfully constipated every visit.

So yea that’s why we have moved to different cities and apartments like we are running from the law (lol) because something happens that we thought was behind us and we have to make decisions based on what we currently know.

So we currently know he has chronic lung disease, is malnourished in some ways, and me and Ryan combined at least have PTSD.
Again, these are not all things kids with “just” Down Syndrome have so its really not about that. Like I’ve said in past posts, it can happen to any kid hypothetically. Some of his airways traits that can go along with DS do not help matters, but I don’t even think quite as often about the DS to be honest. At least not when we are dealing with an illness and figuring out interventions for him.

He is making progress developmentally and we will continue to work on that as we are trying to cooordinate outpatient therapies for him.
One thing for sure I know is he is all worth it.
This post/journaling is all over the place but basically it is hard to let it sink in that something is going to be around awhile and you don’t know when an end in sight is. Things have been so hard and socially isolating for us as parents that I reallly just want to kick something or lie my head down and cry. There are no simple answers and us as the parents have to come up with that. We put prayer to it and do what we feel led to do but any decision we make is scary and frankly none have come up with the outcomes we 100% wanted except that Ethan is still with us. And for that we can be truly grateful. He is maturing and putting his dishes in the sink and saying more words and being very affectionate to his little sister. He is not perfect but I’ve complained about his medical issues enough that it wouldn’t be fair to talk about other things. He’s a good kid.

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Pre-School Pretest: What My Son knew and ate before starting school (dev center) and first few days

Age: 2 years, 8 months

1st day at dev center (at age 2)

1st day at dev center (at age 2)


SPOKEN WORDS: (Some of these are “approximations” technically, where some of the word is said, but as long as I know he is saying something that sounds like the word and using it in the context that makes sense, I just count it as a word.) Usually people who are around him on a weekly basis would be able to understand what he is saying; or just someone who has worked with young children.

PHRASES
“did it!”
“Read, please” (or book please)

ball
book
read
banana (doesn’t say “b” part usually)
“nanas” (his own word, meaning snacks usually)
Mommy
Dadda
Nin Nin
Poppa/Papa
Meme for “Memaw”
up
down
hat
bye bye (or just bye)
cheese (no ch sound yet)
potty (says it “pot pot” while signing potty)
“poo poo” (meaning what you think)
bath-spoken as “ba ba”
Kix (as in the corn puff cereal) Says all but the “i” part, surprisingly.
hi
hello– “-Lo”
outside
hot
dog/doggie
toe (For actual toes as well as Cheetos, which he occasionally eats)
“Tee” (for tortillas-He loves em!)
red (only repeats so far; doesn’t seem to identify this color that I can tell.)
wow
woah
please

He says “–gle” and shakes his hands making an excited sound, always the same sound, when he wants to watch The Wiggles, which is all the time. Pretty sweet. That and Signing Time are the only shows he’s ever made up a gesture to request watching.

ASL (American Sign Language) SIGNS USED, broken down by topic:

NATURE
wind
rain
snow
outside
tree
grass
stars
moon
cold
hot

ANIMALS (he does a sound for all of these as well. some sounds but not signs for certain animals.)
fish
shark
dog
cat
monkey
gorilla
bird
horse

FOOD/DRINK/MEALTIME
water
milk (not as much lately)
eat
drink
cheese
cracker
apple
table
more
cereal
finished/all done
“no thank you” (shakes head while signing thank you. only when prompted, working on thsi instead of pushing food away or throwing it!)

BATHROOM
wash hands
potty
clean
brush teeth

PEOPLE/interaction word signs
baby
Dad
Mom
Grandpa (does this for both grandma and grandpa right now)
uncle
(He has some signs he made up for some aunts and uncles and touches his cheek because of something my mom did a lot when talking to him. haha )
please
down
up
go
please
together
read
help
name
thank you
yes (nods head or ASL version)
Love you (his variation of the “I love you” sign that includes the three ASL letters).

EVERYDAY OBJECTS
hat
book
boat
car

BEDTIME
goodnight
sleepy
sleep
wake up/awake

FEELING WORDS
happy
mad/grumpy/angry
sleepy
surprised

COLOR SIGNS
red

NON-ASL GESTURES USED TO COMMUNICATE
“love you” gesture
“kiss” (blows kisses and will kiss when asked)
(BODY PARTS)
touches head
face
hands
nose
hair
knees
toes
ears
eyes
mouth
teeth
chest

PRETEND PLAY
has done brief pretend play things such as eating fake fruit (pretend eating and sounds), pretending popcorn pieces are eyeballs by holding them up and saying “eye!” and most frequently, pretending something is a hat that he clearly knows is not a hat and saying “hat” and placing it on his head. Also makes toys make animal sounds.

It is hard for me to keep up with everything, but I’m trying my best to keep up since I’m asked what he can say and do a lot! Being with Ethan one day as an acquaintance or stranger (or even family) doesn’t always give a clear picture of what he can do because he is shy at first!

watermark backpack
FIRST FEW DAYS

So far Ethan has been on the sad side at school, but he will still eat and nap and sometimes play! The transitions from 1-on-1 therapy back to class are hard for him as is being dropped off at school. He drank from a sippy once for his classroom teachers so hopefully we will see more progress there as he watches the other kids drink from cups. (Just so you know, if you have a kid with Down Syndrome, sippy cups are not generally recommended-well and many SLPs will say not to give ANY kids sippys, but we just try everything with Ethan because he is nearly 3 and still on a bottle. He loves that bottle even though he can drink from a Tervis..and apparently a sippy!) Most cups for kids on the market now are just so hard for Ethan to get out-I’ve seen him diligently try and fail to get the thickened liquid out. Its hard for me-yes I try it too!

I’ll try to post what he has learned from school and how the transition is going for those who are interested because you are A) an Ethan fan or B) you are considering a developmental center for your child.

Should you keep signing (ASL) with your speech delayed child? 5 Reasons this Momma says “yes.” (Verbal and ASL Word Count example for a 2 1/2 year old with Down Syndrome included)

Since I was working so hard to get Ethan so speak or sign when he was younger (before he was 10 months to a year), I didin’t think ahead much as to whether I was going to stop if he starting communicating verbally. Then he finally did start saying some words verbally, although he still predominately signs even now at 2 1/2. Im’ sure a lot of parents who do “baby sign” as some parents of typical kids call it since they mainly plan to use signing until their child talks. If a parent has a child with speech delays, however, they may have a hard time deciding if and when they should “drop” the ASL. We have been using ASL for quite awhile with my son (who has a pretty significant speech delay, but has made wonderful progress in the past year and actually speaks verbally quite well when considering his Down Syndrome and developmental delays from what I gather.) We started using ASL when he was 2 months old, signing and talking to him all the time while learning from the Signing Time and Baby Signing Time DVDs and finally saw some feedback from him around 10 months. What I have learned is that I don’t really see a reason to stop using ASL, especially because it seems to augment his verbalization skills rather than replace it. Here is why:

1)Communication reinforcement for the kids with speech delays: To learn language, kids need the reinforcement that we understand what is being said when language attempts are made.This can be done with ASL and verbalization of whatever language your family speaks. If my son is making sounds that I don’t understand, how can I reinforce that? I can’t, and therefore he may not try it again for awhile. If he can also use ASL while making a verbal attempt, however, I can make sense of the sounds he is making then praise him for both communication skills. He will likely (and has) start speaking while signing or sometimes just verbalize. It really doesn’t matter to me if he keeps signing while talking. I would not discourage it..why do that? Because it draws attention? I’m pretty proud he is bilingual (if I’m using “bilingual” too liberally for you fluent ASL folks, I’m sorry. But you get the idea.)

2) Confidence: Similar to reason #1, confidence goes a long way for the speech delayed child. (I’m a mom and a former mental health therapist, not an SLP/speech therapist, but I think I have enough experience with my kid and others to know how much this matters to success.) If I understand anything at all my child is trying to say–signing or speaking–then it encourages more interaction. As you will see in examples below, my son’s verbal vocabulary, while improved and good for having Down Syndrome..it is pretty small. A lot of what my son can share with me about his day is “said” to me in ASL. I know what he notices at the grocery store because as we power walk past the cracker aisle (because we already have some at home!) he signs “crackers!” I know he wants to read when a book is on the other side of the room, or the books are upstairs if he signs “read” or “book”. So yes, a kid can point to an object, but how much more confident it makes them in communication if he or she can talk to you in one way or another? Once mobile, a child with a speech delay could theoretically just get things for themselves and look at things without really pointing it out or interacting with others, but the back and forth exchange with your child is what you want to improve their vocabulary.

3)In addition to the benefit of increased vocabulary from the back and forth exchange between parent and child is an emotional connection. Sharing with one another what you notice, what you want, etc. is nice from the parent, but it is nice to see what is on your child’s mind as well. My son loves that I acknowledge that he knows a new puzzle piece has a dog on it by signing it (and barking lately, too.) When we go outside, he signs “bird” and I listen and say “oh, I hear the birds too. Cute birds, pretty singing (usually more detailed than that, not that it has to be. I say what I say! Sometimes I’m more intentional, but the point is to talk, but also acknowledge your kid’s communication.) I don’t even remember who told me initially about signing with my child with Down Syndrome, but I sure am thankful. I don’t know what life would be like without it, in my connection to my son. I’m certainly not saying you can’t have a connection with your child without ASL, but for us it has been a big help. We saw a preteen across the room at an event for kids with Down Syndrome using ASL even though he does talk and I thought, “I bet that will be Ethan a few years down the road..its hard to imagine him not signing at all.”

4) ASL can help you see how much your child with speech delay knows and remembers: Everyday I see how Ethan’s signing helps me know just how much HE knows about everything..what he notices, what he remembers, etc. There are a few gestures or sounds Ethan makes that would let me know he remembered something, but ASL bridges that gap SO much for us.I’m able to tell his therapists during evaluations what he understands about things based on what Ethan has signed. I know that he recognizes a variety of the same type of animal, for example. At first, you might wonder if your child only knows a word or sign because you pointed it out in a book. So this pig in Moo, Baa, LaLaLa is a pig. You know your kid knows that much. If your kid doesn’t do a sound or word yet but will do a sign, you might not know your child notices pigs on videos, in real life, in other books, etc. Taking one bit of information and applying it to other contexts is a very valuable development in learning, and it is something you want to reinforce and discuss more with your child once you know “that’s a pig, like in our book…” To notice that your child notices something is very helpful in their learning. It is just good to know, too. Eventually, I can see how Ethan would not be challenged enough if people assumed he only knew exactly what he verbalized-clearly! I can’t forget that what I recognize as the word “down”, others might not recognize. I want him to get credit for what he knows so that he can have even more built upon that knowledge, rather than drone on with the same old stuff. We are in the long haul for speech therapy, so I have to consider those things. To some extent, it is relevant for a mild speech delayed child who will probably be finished with speech therapy by age 5 or so, in my opinion.

5) It allows your child with a speech delay to have a little extra confidence in a skill set they have that most people do not..a second language (IT would be great to teach to your kids without speech delays, too. Can’t we all use a little extra skill and along with it, confidence?)

For my own records and for your perusal, here is what I have for Ethan’s spoken words and ASL signs, broken down into topics. This is probably not an exhaustive list as it is just too hard to remember everything. I’m guessing its pretty close to what he says on a daily basis, though. I did try my best. Also see this post if you have interest in using ASL with your child-teacher or parent. Besides my own positive experience in using ASL with a speech-delayed child, I have read scholarly articles that say ASL helps rather than hinders language acquisition and usage.

Give the list a look and then comment to let us know how ASL has helped you with your children!

SPOKEN WORDS:
ball
banana (doesn’t say “b” part usually)
“nanas” (his own word, meaning snacks usually)
Momma
Dadda
Nin Nin
Poppa/Papa
Meme-couple of times trying to say “Memaw”
up
down
bye bye (or just bye)
cheese (no ch sound yet)
potty (says it “pot pot” while signing potty)
“poo poo” (meaning what you think)
bath-spoken as “ba ba”
Kix (as in the corn puff cereal) Says all but the “i” part, surprisingly.
hi
hello– “-Lo”

ASL (American Sign Language) SIGNS USED, broken down by topic:

NATURE
wind
rain
snow
outside
tree
grass
stars
moon
cold
hot

ANIMALS (he does a sound for all of these as well. some sounds but not signs for certain animals.)
fish
shark
dog
cat
monkey
gorilla
bird
horse

FOOD/DRINK/MEALTIME
water
milk (not as much lately)
eat
drink
cheese
cracker
apple
table
more
cereal
finished/all done
“no thank you” (shakes head while signing thank you. only when prompted, working on thsi instead of pushing food away or throwing it!)

BATHROOM
wash hands
potty
clean
brush teeth

PEOPLE/interaction word signs
baby
Dad
Mom
Grandpa (does this for both grandma and grandpa right now)
uncle
(He has some signs he made up for some aunts and uncles and touches his cheek because of something my mom did a lot when talking to him. haha )
please
down
up
go
please
together
read
help
name
thank you
yes (nods head or ASL version)

EVERYDAY OBJECTS
hat
book
boat
car

BEDTIME
goodnight
sleepy
sleep
wake up/awake

FEELING WORDS
happy
mad/grumpy/angry
sleepy
surprised

COLOR SIGNS
red

NON-ASL GESTURES USED TO COMMUNICATE
“love you” gesture
“kiss” (blows kisses and will kiss when asked)
(BODY PARTS)
touches head
face
hands
nose
hair
knees
toes
ears
eyes
mouth
teeth
chest

Top 4 “Picky Eater” Meals

Its true that my son is more than just a “picky eater.” Compared to most kids, the types of foods he eats are not typical for kids his age. He mostly eats pureed foods, like I have been told many other children with Down Syndrome do. Since some readers and parents may be in the same position of having a hard time finding any “table food” they will agree to eat, I thought I would share the sources of some delicious recipes even Ethan will eat: (I am putting links to online recipes; I am not affiliated with the websites and am just sharing a bit about what I like about the recipes. I’m a recipe follower, not maker.)

Ethan eating the Six Sisters' Cheesey Chicken Spaghetti recipe (well technically it is lasagana noodles in this pic because we ran out of spaghetti.) He loves it and so do we!

Ethan eating the Six Sisters’ Cheesey Chicken Spaghetti recipe (well technically it is lasagana noodles in this pic because we ran out of spaghetti.) He loves it and so do we!


1)Six Sisters’ Cheesey Chicken Spaghetti: I found this on Pinterest as I do many recipes these days. For me, the taste and the level of time required to make it was just right: not so simple that it was full of things that horrible for me, but also not something I have to stand over the stove forever to make, either. This has been the most reliable food to make Ethan happy (my 2 year old who, like I said. only will eat a few things anyways.) It is great as leftovers too, and we always have plenty left over. We always make use of our leftovers, especially these days being on one salary.

http://www.sixsistersstuff.com/2012/02/easy-chicken-spaghetti-recipe.html

2)Chicken Stroganoff. This is such a simple meal and always excites my household when its on the menu. Recently, I heard Ethan saying “mmmmm…,mmm” which can either mean “more” or “this is so good” when coming from Ethan. Either way, it describes how I feel about the meal, too! Here is the link to that recipe:

http://shrinkingjeans.net/2009/09/crock-pot-chicken-stroganoff/

3) Cheesey Chicken and Wild Rice Casserole
While we haven’t eaten this recipe as often, we recently had it and Ethan ate more than one bite of it which means that he REALLY likes it. For him to swallow anything that is a sold food (other than crunchy food, which is easier and therefore more welcome to enter Ethan’s stomach, along with his purees) means it has great potential! This one is a little more work that the others, but it is good, healthy, and different! I like to change things up and try new recipes. It still has a good dose of cheese like all of Ethan’s favorites! (well, the chicken stoganoff has sour cream so dairy, even though not cheese.) I love the website name: “Picky Palate”

http://picky-palate.com/2010/09/13/cheesy-chicken-and-wild-rice-casserole/

4)Philadelphia Cream Cheese Cookbook’s Bacon Tomato Penne. This may or may not be online. Just to give an idea. (Ethan did love it!) I’m not going to give the recipe and get in trouble with that company lol so go buy the cookbook ifyou want that as well as a yummy chicken pot pie recipe!

5)Grilled Cheese Sandwiches. yes, it was processed Velveeta cheese but hey it was one of the first things Ethan ate that wasn’t purees; we had tried other things before. Last couple times we tried it, he didn’t want grilled cheese so we haven’t tried this in awhile.

5) Not a meal, but just FYI on what Ethan eats…he will eat cheddar cheese and bits of turkey deli meat. He won’t let me put it in sandwich form and include bread, after the one or two times I tried giving it. I try again periodically.

PLAIN OLE PICKY EATING VS. SPECIAL EATING CONSIDERATIONS

It has taken a lot of patience and letting go of comparisons to help Ethan in his journey to eating more table foods. When I say these recipes above are his favorites, I also mean they are the ONLY things he will eat that are not purees or crunchy snacks like pretzels and Cheerios. For those judge-y types, it is not for a lack of trying on our parts or his speech therapist’s part. Eating is such a complex thing that requires so many muscles and so much coordination…much more than I know about with a non-speech background. Every meal (with the exception of breakfast normally) we offer Ethan some sort of table food-we try to make it what we are eating, cut into manageable portions. We do not set out any purees that he can see (nor crunchy snacks) until we have offered the table foods and Ethan has either A) eaten it or B) rejected it. If I compare to kids I know, even kids with Down Syndrome, it feels like Ethan is extremely behind in his eating habits; however, every kid’s journey is different and Ethan has also had a lot more ventilator and hospital time than many kids I know. That may or may not be one of the reasons for his narrow food menu. Once I asked other’s experience on an international facebook support group, several parents said their kids were age 5 or younger and only ate purees. I’ve heard of other kids who don’t even eat all the purees, so they are limited to eating only one food group. I am just proud of any strides Ethan makes and no longer get so concerned that he stands out. If people want to judge me as a parent-whatever, they don’t know us and don’t know what goes on. I may or may not explain to them if they make comments because its not as though we owe them an explanation. Sometimes I might just to educate people on what I’m sure any parent or teacher, etc. who works with kids repeats like a broken record:

Each kid is different.

That being said, if anyone has some recipe suggestions, I would love to hear what your picky eaters will eat-whether special needs or just a classic case of picky eating.

Happy Down Syndrome Awareness Month! This Month’s Milestones..

This month Ethan has been showing us he can remember things more and more from weeks ago. Yesterday he showed me he remembered that “Nin Nin” (my mom) and “Papa” (my dad) go together by saying “Nin Nin” when I said Lets go see Nin Nin, then followed me and said “Papa.” He does a lot of whispering lately, so I know he is talking about something but just not sure what! He is trying out more and more sounds and is saying them very deliberately and repeatedly, but sometimes we just aren’t sure what he is talking about! Time will tell.

For those who were curious about the kinesiotape, it doesn’t bother his lips, but some of the tape does bother his back. Only in one spot, though. His PT said it was helping, though, and I haven’t heard of any other kids who had skin sensitivity with kinesiotape, though, so maybe it would be worth looking into for your kids!

We THOUGHT we would get an eye exam last month, but it was rescheduled and I didn’t see my missed voicemail (and drove up there for nothing) SO later this week I may do a post on that since that is when the rescheduled appointment is. I’m very curious how they will test a 2 year old’s eyes.

Be sure to check out this post to share facts about Down Syndrome as well as this post that includes awareness images with Ethan and the blog link. Also, find the “Like us on Facebook” icon on our blog page to see images I share so you can share directly from the Better Than Expected facebook page and see other facts and blog posts I will share. For new readers, notice there is a search bar that can help you find certain topics. I thought with this being awareness month it would be a good time to point that out!

Undies, Bed-Training, and Therapeutic Lip Taping.. (some 2 yrs old and 2 months milestones)

UNDIES/POTTY TRAINING IN UNDIES
We are currently working on potty-training Ethan by having him wear underwear only and taking him potty VERY frequently. (every 30 minutes) He definitely knows WHEN he is wet but still seems like he is having a hard time knowing before that happens. He has signed “potty” once this week so I knew that he needed to go, however, he was already going as he signed this. I can tell he has made a little progress from staying dry for awhile, etc. so we will keep it up! For those trying this method I reccommend getting plain white snug briefs to be able to see when the accident starts immediately. We have borrowed some potty books and videos from the library to see how he takes to those and if they reinforce.

BED TRAINING
Amazingly, when I was frustrated and left the room one night to just let him fall asleep wherever..bed or floor, (I intended to check on him and transfer him later), he was asleep within minutes one night! And he STAYED in the bed with no supervison (other than listening on monitor) So I tried this the next night..and the next..and next. So now he is on his 5th night of being tired, but awake, then falling asleep on his own in his bed with no bars or anything holding him back. Just the mattress on the floor. We are so proud of him.

LIP TAPING
Ethan’s therapists suggested kinesiotape (I believe it is) for his lips to help with lip closure and strengthening which in turn is supposed to help his tongue not thrust out as much (or at all, is the goal.) He is wearing it 30 minutes at a time in his sessions so far. I caught a glimpse of him, and it was black tape that made it look like he had a goatee and moustache. So we will see how that goes! It is brand new so I really don’t have many thoughts on it yet.

cookie monster more alike than different
SPEECH/COMMUNICATION PROGRESS
1)Ethan has been talking more and has some new animal sounds: snake (“ss”) pig (“clearing throat type sound), cow (moo), wolf howling, dog barking (sometimes, sometimes he just bobs his head like he is barking haha) He has also said “Balloon” and “Kix”, as in the corn puff cereal. It is actually the fastest word he has learned to date!
2) telling others “Hi!” more frequently. He waves as well and it sounds like “Eeeeeeye” or “I!” (He approached a group of toddlers at the library train table last week and waved saying “Hi!” and it made me so proud. 🙂
3) Adding more ASL signs into his daily use all the time..We don’t necessarily sign anything new, but Ethan just starts doing signs he hadn’t done before like “apple” for example. I think its all been up there, and he knows whats what but will do a sign he saw on an episode of Signing Time a week ago. We do sign to him constantly as I mentioned in this posta but sometimes I know that I haven’t signed something awhile (like an obscure word such as balloon..not that obscure I guess, but I don’t typically say balloon daily) and he will do it suddenly when he sees a picture or something.

OTHER PROGRESS/COGNITIVE
Ethan has been able to follow some directions, such as ones in singsong or rhyming books such as Llama Llama Hoppity Hop. Oh how we love the Llama Llama books! Ethan is in the 2 year old class at church and gets to have lessons so we are happy for him to get to participate in that.

MEDICAL UPDATES
Ethan has been doing great but will have his thyroid levels checked again in a few months because one of his levels were high at his recent checkup with geneticist (blood draw that screens for several things is what he had done) The thyroglobulin is what was elevated. We will see. I have heard some kids do not have problems with their thyroid later, but some do after an elevated reading such as this. With a stretch of time with no major sickness or surgeries (after the tonsillectomy, that is)We have been enjoying having time outside, playing with his new baby cousin, letting Ethan have some time with other kids and adults in Sunday School and getting out to do things. I think I speak for both Ethan’s dad and myself when I say that we may always dread flu season (even though we LOVE the winter holiday season. Christmaaaas! haha) but we plan to let Ethan participate in Sunday School throughout the winter which is a first. As the time approaches, I’m sure we will get more nervous but he handled RSV last winter much better than he did the flu and pneumonia as an infant his first winter. So everybody go out and get a pumpkin or two, sure, but also get your flu shots!

Ethan is getting his first ophthalmology checkup this week, and although this may sound like an odd thing to be “routine”, it is actually recommended for kids with Down Syndrome to get their first exam at six MONTHS of age! We somehow missed that memo, so we are just now taking him to get his eyes checked! Kids with Down Syndrome can have strabismus (what some call a “wandering eye”), among other eye issues so a yearly exam is recommended for them. Some little ones just get glasses so we will find out. I will update with what a pediatric ophthalmology eye exam looks like, especially for a mostly preverbal child. It should be interesting.

2 yrs, 1 month milestones

Ethan has been making some progress despite him having a tonsillecomy, adenoidectomy, etc recently.
Here is what he has been up to…
He got to meet his new baby cousin and was very intrigued! And yes he did sign “baby” haha. He will sign baby for older kids too, it is rather funny.

Speaking of signs, here are the new ones I can think of from this month:
home
outside
owl
pig
wait

words spoken: sang “Leah” during Signing Time theme song!

Ethan started doing a little pretend play with his pretend fruit and other kitchen set items, such as pretending to eat fake grapes and eating with a play spoon.

physical/PT: He can climb furniture well now! We sadly said goodbye to his PT he has had for over a year and will be meeting a new one next week! He is also using walking to get around more than any other form of traversing, so we are very thrilled about that!

STEPS TOWARD MORE INDEPENDENCE:

Ethan almost scaled the front of his crib from the OUTSIDE so we knew that we had to keep him in his Pack N Play (which is harder to climb because of the netting) while he recovered from his tonsillectomy until we can get him ready to transition to a mattress on the floor! We will be working on that starting this weekend.

We are starting to take him to the potty more frequently: for several months, he will pee in the potty anytime you put him on, whether a tiny sprinkle or a ton. He has only pooped in it a few times, and he still does not cue us. Hopefully with taking him at least once an hour and watching Signing Time’s Potty Time DVD (which a little bird told me he is getting for Christmas 😉 will help.

We are still practicing with the cup with recessed lid and Ethan self-feeding with a spoon..he is doing pretty well! (Mostly with the spoon)

I think that about covers it! On to bed training next!