Saturday, August 4, 2012

Gearing Up for a Marathon

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!

13 months old ~ 29 1/4 inches ~ 20 1/2 pounds

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