A chronicle of my life events, including raising children with Asperger's syndrome, with Down syndrome and with love.
Life, love and laughter, with a few unexpected moments thrown in for good measure...
Family and Friends... October is almost upon us! For many, this brings to mind things like pumpkin-picking, apple cider, hayrides and trick or treating. But October also means Down syndrome awareness month. Last year, Terrific Team Turner raised over $270 to benefit the York Area Down Syndrome Association and the National Down Syndrome Society. The funds raised benefit local families living with Down syndrome and support the NDSS in their mission, which is: "to be the nationa
l advocate for the value, acceptance and inclusion of people with Down syndrome." This year, our goal is to raise at least $400. With your help, we can do it!!
In the last 15 months that we've had the pleasure of having Levi in our lives, our family has become ever more aware of the importance of acceptance and inclusion for everyone. The Down syndrome community needs the support of people like you so that those living with Down syndrome can have an opportunity to lead fulfilling lives and give back to the community in their own valuable ways.
This year, Terrific Team Turner is fundraising and participating in the 8th annual Buddy Walk for the YADSA on Saturday, October 13th. If you are able to make a charitable donation in Levi's name, please visit our firstgiving page. Every person matters - every penny counts! Thank you for your love and support!
I've failed miserably at keeping this blog current since Levi's birthday (Facebook is a lot easier for me to keep up with!) so some recent shots of the aforementioned cutie pie doing his thing...
double duty: crawling practice AND trimming the grass!
giggle-mania
crazy reaction to his first taste of brownie goodness!
I've complained before that lack of time is what keeps me from posting more often. It's certainly not for lack of things to write about. For a few weeks, I've had this feeling like I'm working hard to just stay ahead of the tidal wave of stuff-to-do stacking up behind me... and suddenly I realize the summer will be over in 3 short weeks! Oh no - so much to do before then!
Katelyn and Trevor just finished up their last week of summer camp. They attended a total of three weeks, spread out over the entire vacation, and really enjoyed themselves immensely. They had some great field trips and made new friends all at once. They're already looking forward to doing it again next year!
This next week has a lot of craziness in store for us - multiple outings with the big kids to amusement parks and activities to include rolling down a hill in a giant inflatable ball filled with water! Oh yeah!
I rolled down the giant hill in this H2OGO ball!
It's 11 feet across - the inner ball is 6 feet in diameter and
you can bodysurf with up to 3 people & about 5 gallons of water! It was FANTASTIC (and chilly)
Before the end of summer, we've got our longest road trip yet and then multiple birthday parties (including Trevor's birthday activities) right before school begins. It will be interesting to see how we've held together by the time that first school bell rings.
Evan truly enjoys his fashion accessories
Being a cat truly is a difficult job.
"Hey there, Handsome!" Enjoying a fully self-fed meal...
In the meantime, Levi has been keeping us (and by us, I mean me) very busy this last month. We returned from vacation several weeks ago and he bumped the back of his head in a fall. It was very minor and didn't seem to have any lasting effects; however, two days later he begain having spells where his eyes would cross momentarily and his head would drop slightly and pull to the left. It appeared to have come on suddenly and was happening almost constantly, about every two minutes. Because it began on a Friday evening, his pediatrician suggested just monitoring it and reporting to them on Monday morning - as long as it wasn't accompanied by any other symptoms which would be concerning, like vomiting or fever or convulsions. It stopped for about an hour before he went to bed and so we decided to let it go and see how he was doing the next day.
The episodes happen 3 times (around 0:30, 1:10 and 2:47)
but the last is the easiest to see.
The next morning was fairly uneventful. He had a few of the spells, but nothing at the frequency with which they were occuring the day before. Once he got up from his afternoon nap, however, they were happening almost constantly again. I had several of them on video and decided it would be safer to take him to the emergency room for evaluation. We got there around 7:30 pm and finally got to see the doctor around 8:30. He was given some medication to sedate him (Versed) so that they could rule out tumors or a head injury with a CT scan of his brain. They also completed a round of blood tests to check for infection and what not. Since they wanted to start an IV anyway, this ended up not being too big a deal. It was only one stick with the needle and they were set. As a bonus, they were able to check his thyroid levels and complete a test for Celiac disease, which his GI doctor had ordered at the beginning of June but we weren't able to complete because he was dehydrated previously due to his teething complications.
Finally around 11:00 pm, Levi gave up on enjoying his medicated state... (yes, that baby was "higher than the Empire State")... and they were able to do the CT scan. Both the labwork and the CT came back negative, so the pediatrician thought it would be best for Levi to see the neurologist and have an EEG to rule out seizure activity. Unfortunately, the hospital we went to doesn't have a pediatric neurologist. So we were transfered to a nearby children's hospital at 3:00 am via ambulance. It was definitely the quickest ride I've ever had between the two cities!
We finally got settled into our room around 5:00 am (after meeting the nurses and on-call doctors). Around 8:00, I was feeding Levi breakfast when the eye thing started happening again. It stopped the night before because of the Versed - it calms the neurological activity. The nurses saw it and then the pediatrician at the new hospital stopped by during rounds. She took one look at Levi and got his history and told me that she didn't think it was seizures and that it was probably just strabismus (crossed eyes). She felt he should have an opthomologic workup before having an EEG and seeing a neurologist. That is apparently the downside of being in the hospital on a Sunday. There is no staff available for the EEG and the neurologist mustn't want to be bothered without the test to review the data. So... we were discharged without seeing a neurologist, which is the whole reason we were transferred to the hospital in the first place.
Looking forward to getting out of that hospital crib!
As luck would have it, Levi already had his semi-annual appointment with his pediatric opthomologist scheduled for the following day. We went to that appointment and the doctor confirmed that Levi does have strabismus; however, it's a symptom, not the underlying cause and so he couldn't rule out seizure activity as the 'why' behind the activity. He did recommend we follow up with the neurologist.
I called the pediatrician's office back to get the referral to the neuro and was astounded when the neuro called me back with an appointment for 2 days later. That's almost unheard of! Once we were at the neurologist's office, he provided some relief by explaining that he felt - based on the videos I showed to him and the history given - that this probably is NOT seizure-related. He explained he felt the diagnosis would probably end up being Spasmus Nutans, which is essentially a harmless condition. It is a triad of symptoms which normally occur together (although all three don't have to be present for it to exist). Strabismus - check. Head tilt - check. Nystagmus (jittery, side to side motion of eyes) - no. Thankfully, it doesn't require any treatment and most children outgrow/develop out of the condtion by age 3. That was definitely good to hear.
Unfortunately, the only way to arrive at a diagnosis of Spasmus Nutans is to rule out everything else, which meant that Levi still needed to have an EEG and an MRI to view the lower portion of his brain and the brain stem. The next day, we received a call to attend the EEG - another huge surprise. My understanding is that most people end up having to wait a week or two to have that test completed on an outpatient basis. Levi did pretty well with that test. They wired him up once he was asleep and he made it a whole three mintues after waking up before he pulled all the leads off. Unfortunately, he didn't have any episodes while he was awake and hooked up to the machine. The technician who performed the test said that if it is seizure, it often will appear in sleep - so even if it didn't happen while he was awake doesn't mean the test wouldn't catch seizure activity. Good to know. At this point, we still haven't heard back on the results of the EEG. I presume this is good. Bad news usually travels more quickly.
Blissfully Unaware
his usual, cheery self - even after ending up with some nasty bed-head from the goop for the EEG
We are still waiting to have the MRI. It's not scheduled until almost the end of summer vacation, but I'm okay with that. I feel very confident in the assessment of the neurologist and Levi hasn't been having nearly as much activity as he did those first few days. It's still going on, but it's a lot less scary now!
In other news, I'm glad I asked them to check Levi's thyroid back in the emergency room. It turns out that Levi's TSH level was up to 11.6. The "normal" range is from 0.35 - 5.5. His bloodwork at age 4 months was at 5.85, but the T4 levels were good, so they weren't concerned. Around 6 months of age, he started having several symptoms of hypothyroidism but it was mostly chalked up to the Down syndrome diagnosis and related conditions such as low muscle tone.
People with Down syndrome have a higher incidence of developing hypothyroidism. Some doctors will say it's less a matter of "if" and more "when" the thyroid will begin to fail. On top of that, we have a family history of hypothyroidism and so I've tried to be even more diligent about monitoring for problems. I'm very glad I stayed on top of this issue. We managed to get in to see his endocrinologist and he agreed to start treating him with the same medication I've been taking for the last 15 years. I can't wait to see how he's feeling in the next couple of weeks as the medication starts to take effect!
Peek a Boo!
As if that wasn't enough - Levi barely recovered from his major teething fiasco before he started getting FOUR more teeth! His lateral incisors (the ones next to the front teeth) are all coming in at once. I can see the outline of the upper teeth through the gums - ouch! And the little pits which open in the gums before the teeth come through have appeared on the lower jaw. Poor guy. Thankfully, he already has his amber teething necklace in place and so far he's not suffering nearly as much as he did with the last two teeth. I'll keep my fingers crossed that he doesn't get hit with the congestion that plagued him last time. That was awful and we have no desire to deal with that again!
This past week, Levi was fitted for Sure Steps, which is a system of ankle/foot braces for kids who need extra support in that area. It looks like a little molded-plastic boot which closes with velcro straps. It is worn under socks or shoes and compensates for the hypermobility in his ankles. I've heard so many good things about kids who get these and how they just "take off" with their motor skills once they feel more secure in their positioning. I sure hope that's the case for him as well...
Ta-Da! I'm standing!!
Despite not yet having the braces, Levi has accomplished a great thing this week. Just today, he pulled himself to a standing position in his crib, without any help at all! He hasn't been able to do that before because even though he has the muscle strength and the knowledge of how to do it, his ankles just roll out from under him when he tries to do it. But he's figured it out... AND he did it on the floor too, using the frame of his brother's toddler bed! Hooray! I can't wait to see what he accomplishes when the braces arrive in another 3 weeks or so...
Additionally, he decided to start experimenting with some alternative crawling techniques this week. In the bathtub, he did do some quadruped crawling, which was a first. But once he took it to the floor, it turned into a three-point crawl, with only one knee on the ground and one foot too. I guess it's half crawl - half scoot. He's only done that just a very short distance. About 18 inches between him and the couch - any more would probably have been too intimidating!
Levi's First Three-Point Crawl
Levi had a DAYC evaluation recently with Early Intervention (gearing up for his annual review). His greatest deficit was in language, which came in at 8 months - with his actual age being 13 months. That's only a 29% delay. If he didn't have the diagnosis of Down syndrome, he would need a 25% delay to qualify for therapy with Early Intervention, so he would only just barely qualify. I would say that considering he's had no speech therapy to date, that's pretty good! At least, I'm proud of the work we've done in that respect.
On the other hand, we recently had a speech therapist on hand as Evan was receiving a consult. I explained that it had been recommended to us to wait until Levi was 18 months old to begin speech (I guess because that's when typical kids are expected to begin having their "language explosion") - but that I was concerned he might be awfully far behind if we waited that long. She expressed that her opinion is to begin as soon as possible for the best possible outcome. So needless to say, I immediately informed Levi's service coordinator that I want to add speech to his therapy regimen when we do his review this month.
That means committing to three hours of therapy per week just for Levi - and another hour every other week for Evan. That's a lot of work for one mama. But we've incorporated everything into our schedule thus far - I'm sure it won't take a lot of adjustment to make it work for us in the future. Once school starts again and our schedule settles down a bit, it won't feel quite so hectic, I think.
I should also mention that Levi has been picking up a lot of smaller skills as well. He clearly has an understanding of object permanence as he's been dropping toys and other items off the side of his high chair for at least 2 months and then looking over the side to see where they've gone... He also has gotten better about looking for toys hidden beneath a blanket during playtime. He laughs when you play peekaboo with him and turns the pages of books when you prompt him by saying, "turn the page," and sometimes wiggle the page itself for a second. He has also learned to clap and is very enthusiastic about it. Take a look...
He had his first boating experience at Lake Raystown last month and enjoyed it very much. He took a great nap and lapped up a little lake water (before we could stop him). All in all - it was a great day for him! He also had his first beach vacation in Brigantine/Atlantic City, NJ. Lots of fun there too. He had yummy handfuls of sand when Mom wasn't looking. Ick!
Naptime on the Lake
Apparently boating is hard work!
Various Beachy Photos - Brigantine Beach, NJ
Splashing in the Waves
The View from the Top of Lucy the Elephant in Margate City, NJ
When we got home from vacation, I tried to give him a slight trim - but lopped off far too much hair and so hubby convinced me to take the clippers to his head. It was awful (for me) but in the end, Levi looks adorable. I think my main issue is he definitely has a big-boy haircut now and I wasn't ready for that. He definitely looks older now and it's hard to accept that.
The New 'Do!
We've got so much more to look forward to the rest of this month. By the time Levi is 14 months old, I'm sure I'll have a TON more to write about. In the meantime, Levi will keep chugging his chocolate milk. Maybe soon it will be out of a sippy cup instead of a bottle. We'll see... come back soon for more!
First, my apologies to Levi's fans. I have been a major blog slacker. I admit it freely and although I have some things to write about bopping around in my head, the time needed to put it into words is just beyond my reach these days - specifically because of the things I want to write about. My guess is that we'll have one huge update somewhere around the time the big kids head back to school and I actually get a few moments to myself during the day. Until then, I'll leave a few crumbs around to tide you over....
Drum roll, please........
Levi FINALLY decided it's time to crawl without his belly on the ground. Where does he make this big-time decision? In the bathtub of all places! Do I have a fabulous video to show off this new skill? Yup. Is it public-viewing worthy? Barely - sadly there is naked baby butt all over the place and I just can't predict whether Levi will be disappointed in me (20 years from now) if I post it here. So I quickly added a diaper for a little modesty and requested a repeat performance. He obliged - barely. But I have evidence, which is all that matters!
Of course, after the bath, he continued the odd-ball crawl across the kitchen floor sans diaper. Again - no video I can share publicly. Yes, I'm pouting... but I'll get over it because I know this awesome little boy will keep on practicing until I can't remember what he looked like doing his patented inchworm "crawl-drag".
For months (it seems), we've been focusing on trying to get Levi to assume the quadruped position. He's hated it from the beginning, but is slowly becoming more accepting. In fact, lately, he's been doing it on his own for a few seconds at a time! Of course, this is completely in stealth-mode only and it's taken forever to capture it on film. I've even witnessed him doing the tiniest bit of rocking while in this position. This was only possible to observe because I was entirely hidden behind the nearby furniture, using a complex system of mirrors to reflect his image back to me. If he'd have known I was watching, it never would've happened...
So this is what they've been requesting for months? No biggie...
But when did this development come along? When Levi has become more interested in standing, of course! His progress never makes any sense to me... but mine is not to question why, I suppose!
So now that all he wants to practice is pulling to a stand, the standing is leading to other things, including the instinct to lift his feet and practice stepping. I find this immensely exciting; therefore, this little video...
Two weeks ago, he wouldn't do anything with his feet, even if I tilted him to the point of almost falling over. Now, with just a little tilting, he's bending his knees a bit & lifting his feet and moving them forward. I suppose it's more of a shuffle, but every great accomplishment begins with just one small step... Go Levi!!
Levi's suffering in the last month because of his teeth has become legendary in our household. I'm fairly certain that everyone I know is tired of hearing me go on about how miserable he is and why won't it stop and I'm going to lose my mind worrying about him not eating and drinking....
Thankfully I can say with a fair amount of confidence that the worst is behind us! With my finger, I can feel the edges of his upper central incisors (front teeth). That generally means the worst of the pain and inflammation is over. Hooray!! He hasn't needed pain medication in several days, which is fabulous - but I wanted to write an update on this specifically because I believe I found another tool in the war against teething pain and I want to tell others about it. If you have a child who has teeth erupting, you need to know about baltic amber teething necklaces.
enjoying the benefits of his necklace, in the pool -
and definitely looking the part of the little surfer dude!
The amber (petrified tree sap), which happens to be very beautiful by the way, releases a chemical called succinic acid when the amber is worn and warmed by the body. Recent studies show this chemical has anti-inflammatory and pain relieving properties. I gambled $20 and purchased Levi's necklace from Amazon (love their free shipping!!) and less than 48 hours later, I was reverently placing it around Levi's neck. It has several safety features, including hand-tied knots between each stone in case of breakage and a screw-together clasp as opposed to the typical levered clasp. It's "tight" enough that it cannot be put in the mouth, yet it's nowhere near "tight" enough to cause any kind of irritation to the skin. I do check it at least twice per day to make sure nothing has changed.
Within hours, I noticed a significant improvement in Levi's tolerance. He had been feeling so lousy, I couldn't set him down on the floor without resulting tears. After the necklace, he was more like his usual self, content to play with toys and hang out with us when we couldn't actively play with or hold him. After a full day, his willingness to eat and drink started to return and it's been improving since. It's been so great, he hasn't had any aceteminophen or ibuprofen in several days. I'm seriously wondering if buying him a second bracelet to wear as an anklet would be worthwhile? After all, we've got at least another year or so of teething ahead of us.
He's not fully back to normal yet. He still is rubbing everything he can on those teeth and always has his fingers in his mouth. But he's sleeping normally and is eating most of the foods he used to eat (again) and we're working on getting enough liquids back into his diet again. He had just started taking a bottle really well but with all the mucus and resulting sinus congestion because of the teething, he wants almost nothing to do with it now. But we're working on that...
Anyhow - seriously - if teething becomes the bane of your existence (like it has for me) seriously consider getting one of these necklaces for your child or grandchild because there is definitely something working there!
Happy Birthday to my handsome, charming, intelligent, creative, snuggly and loving little boy!
I've watched it approaching though it was stealthy for a while. A slow change has been creeping upon Levi in the last 6 weeks or so. His pursuit of understanding in his play - his posture - his appearance... he is moving further away from true infancy and is getting a whole lot closer to toddlerhood.
This birthday has dredged up a whole lot of emotions which I thought had been dealt with or solidly buried. I can honestly say I've never cried over my child's birthday before. It brings back memories from last year and all the worry and grief that came along with Levi's surprise diagnosis. I find myself walking a line between wanting to interact with Levi like he has no different-ability and wishing for more time to push extra therapies into his schedule. It's hard... but then, many say that nothing worth doing is ever easy.
Like (on to a lighter topic) party planning... I spent several weeks prepping for the big celebration, choosing just the right theme and accessories. In the end, I chose a monkey theme with bright colors because I feel it reflected the joy and fun of his personality.
I have a love of baking and decorating the birthday cakes for my kids, with the exception of the ones for the first birthdays. This year, I felt compelled to do it myself and fell in love with a building block cake design. It took two days and approximately 7 hours of time in the kitchen, but I managed a level of success with which I was happy! The result was this:
My geometrical shapes weren't perfect - but overall, I was impressed with my first try at this design. The big cake was for guests - the little cakes were for Levi to smash (A) at the party and (B) at his birthday photos tomorrow. It went over well... you can see how much he enjoyed his cake! He dug right in without any hesitation...
He wore himself out a bit and needed a short rest...
And once he devoured (smeared) most of it, he yelled for more!
Once he recovered from the wipe-down, which he despised, by the way - he was content to drift off into a post-sugar-high coma in the arms of a good friend. After he recovered his wits, he returned home to open a few gifts before heading to bed for the end of his first day as a one year old!
Sure, it looks like he's asleep - but he's actually fascinated by the all the cool puzzles he received (to help him work on his fine motor and cognition skills)
Notice the cat, providing assistance in the "unpackaging" department? It's her calling in life...
He also enjoyed reading (and tasting) a multitude of birthday cards... several of which noted donations to our local Down syndrome association in his name. Very thoughtful of our friends and family...
All in all, it was a wonderful birthday celebration. There were people we'd invited who weren't able to attend and we missed them, but some great friends were able to celebrate with us and that means the world to us!
Levi is able to do so many wonderful things, I couldn't possibly list them all. To name just a few, he can pull to a stand from a 90-90 sit. He can get into a kneeling position while holding on to a higher surface. (like peeking over the edge of the toybox). He can get Mom's attention by yelling for her to look at him. He recognizes several signs for things like, "eat", "milk" and "all done." But he tops the list with being able to capture the hearts of all who take the time to know him... He is a sweet, sweet, little baby who is growing into a little boy right in front of my eyes.
This past year has flown by in an instant and my experience tells me that he'll be two before I can fully comprehend it. He'll be walking and communicating (talking or otherwise) and surprising us more and more with all that he can do with our faith, love and perserverance.
Levi has had a rough couple of weeks because of his teeth that are ready to break through the gums. They've caused him a ton of pain and difficulty eating and drinking. As such, he lost almost 2 pounds in the last 3 weeks but somehow managed to grow almost an inch longer during that time. That probably didn't feel so great either...
So one year after an expeditious delivery into my arms, Levi has gained 9 1/2 inches in length and almost 12 pounds. And his head has grown by 4 1/2 inches too! That's a lot of work for such a little guy...
He's wearing a size 4 shoe and has adorable footprints, just like his siblings. He's filling out a 12 month outfit and was close to moving into size 18 months in some items. With his recent weight loss, that may be delayed a bit, but it's still not far off... His beautiful blue eyes are clearly going to stay blue, just like his siblings. I had hopes that at least one of the kids would have green eyes like their mom, but I get to look at five sets of baby blues (hubby's included) each and every day! His hair is definitely darker than it was when he was born and has just the tiniest hint of a reddish hue in the sunlight. I would describe it as being a combination of light brown which graces Evan's head with a bit of the coppery red afforded to Katelyn and Trevor.
He is beautiful and snuggly and perfect and I dream of great things for him - love, life and the pursuit of happiness. Just like us all...
One week to go until Levi's birthday! Aaaagh - It's so exciting and stressful all at once. But I can't even focus on that yet because he has been horribly ill (on the inside) all week. No sneezing or coughing or runny nose or anything obvious (hence the "on the inside" comment). But he hasn't eaten any food for six days and is barely taking any liquids either. He's been to the doctor who pronounced him laden with viral infection but wasn't overly concerned about it as his lungs and ears were good. Rest, pedialyte and time were the recommended treatments.
It was either this...
or this, pretty much all week long.
He's spent most of his days sleeping and is clearly exhausted when he is awake. He only wants to be held up on mom's shoulder and cries if you try to put him down anywhere. Thankfully today seemed like he might not be quite as sick as before. He drank more liquids than he has in days (though still not much) and was interested in playing with a few toys once he was medicated enough to be able to breathe.
recovering from his sick-day photo shoot
All my fingers and toes are crossed that he seems improved tomorrow because otherwise, there's another visit to the doctor's office in his future! Well actually - there are more appointments in his future regardless because last week, he went to see a pediatric gastroenterologist to rule out complications from his GERD. He's been referred for blood tests, an upper GI xray series, a barium enema and a gastric emptying profile. And his Prilosec has been doubled to 2 doses per day.
On to happier thoughts...
This weekend is Levi's first Father's Day! He has participated in putting together a super-cute memento as a present for hubby. I'm certain he's going to love it and I look forward to sharing it here once he receives it!
how many years do I have to wait for them to all look up at the same time?
Birthday party fun is slowly coming together. It looks like we'll have about 35 guests, which means that I've got to get crackin on my cake design and finalize plans for the menu. I have all the table supplies and balloons. I can't wait to put it all together and see the final result!
I definitely have mixed emotions about my baby growing up. I'm very excited to see what next year brings and in some ways will be happy to see this very tumultuous one end... BUT my baby is getting so big and I'm afraid the days of cuddles and snuggles are soon to be gone. I will hold on to them as long as I can, while still being the pushy mama bird trying to make her fledging grow!
Saving more details for next week's monthly update, time for pics and stats...
UPDATE: Back to the doctor on Saturday and yup, he's got an ear infection in the left ear. Antibiotics are our friends and so hopefully by the end of Father's Day, he'll be feeling a WHOLE lot better!
Weight: 20 pounds, 10 ounces (down about a pound from previous measurements)
Length: 29 inches (I measured this about a bajillion times - I'm certain this is very accurate though I'm hugely surprised because he hasn't grown at all for several months - I especially wasn't expecting it while he's ill)
Finding some energy to play today
am I about to cry? maybe - let me think about it for a second! don't rush me...
even the favorite spinny toy just isn't as exciting when you'd like to be lying comatose on your face instead
