Thursday, October 9, 2008

The Deal with Lucien

Okay, I alluded to what a difficult summer it's been, and it's not only because of what was happening with Mielle. Around the same time (March-ish) when we realized things weren't right with Mielle, we realized that things weren't right with Lucien, either. He has significant developmental delays that were becoming clear around that time.

First of all, sorry to those who haven't heard about this yet. It hasn't been our intent at all to be hush-hush about it; we've been talking about it when we see people, and when it comes up, but haven't sent out a big news update about it because it was just too overwhelming to tackle it, with everything else.

So, he was 12 months old, not crawling, not even close to walking, not pulling up, just totally immobile. He had, of course, been having all his well-baby check-ups and starting around 9 months I began to feel a little concerned about his milestones. The pediatrician felt a "wait-and-see" approach was appropriate, and I was happy to go along with that because we really had our hands full with Mielle's situation, and it was just devastating to contemplate the idea that there might be something wrong with Lucien, too! But, eventually it became obvious that things were amiss, and so the odyssey began to get him seen by a specialist and generally figure out what we should be doing. Unfortunately, our pediatrician failed to mention that it takes MONTHS to get an appointment with a pediatric neurologist, or a developmental pediatrician. NIGHTMARE!! I was calling everywhere trying to get an appointment, because now that we'd decided he needed to be seen, I wanted it to happen as soon as possible. I had no idea how the system works.

Anyhow, long story short, I managed to get him an appointment with a neurologist at UCSF for, I think, end of May. In the meantime, I heard about an agency called Regional Center of the East Bay, that provides early intervention for kids under 3 with delays, so I started that process as well. It's a government bureaucracy, so there is a fair amount of calling, waiting, following up, waiting, making an appt, waiting, having another type of eval, waiting, waiting for reports to be filed, waiting, etc etc. So that was a little difficult, but he was assessed before too long and found to qualify for services (which means he was delayed enough to warrant receiving services).

It was his gross motor skills that originally had us worried (crawling, walking, etc) but he was significantly delayed in areas of speech and social interaction as well. It's a difficult thing to hear about your child.

His physical therapy eval revealed that he has low muscle tone - which basically means that the tension of his muscles is too loose, so he's kind of floppy and it is especially arduous for him to do normal things like sit up, pull up, etc. Basically, anything which requires him to use his muscles feels like running a marathon to him. The effects of the low muscle tone can be mitigated by increasing the muscle strength, but the low tone never really goes away. Other than this (knowing that he has low muscle tone), he does not have a diagnosis to explain the delays.

He has had a number of blood tests as well as an MRI of his brain (that was in July) that were all inconclusive. We are fighting with the insurance company to get them to pay for genetic testing to see if some kind of abnormality or syndrome can be identified; if we don't win the fight, we'll decide whether to just pay for the test ourselves. (I don't even know how much it is).

In the meantime, and here is the GREAT news, he has been making fabulous progress with the many types of services he has received through Regional Center (physical therapy, something called "Parent-Infant Program" which is like a pre-school for kids with delays, and he just started speech therapy). He is now crawling from room to room army-style (on his belly), crawling up and down stairs, pulling up to standing and cruising along the furniture. He has little ankle braces to give him support while standing, etc. (low muscle tone goes hand-in-hand with hyper-flexible, too-loose joints, so the braces help his ankles stay aligned). They're small and cute and not that noticeable, not Forrest Gump-style full-leg models or anything like that!

His speech, communication and understanding have been exploding lately. He's saying new words, imitating our speech, pointing at things like "the cat" and stuff like that.

He is still delayed, no doubt about it, but the fact that he has been able to make so much progress in such a short time is very, very encouraging. I'm hopeful that with more time and more special services, he'll eventually catch up and be a "typical" kid. My theory is that the low muscle tone is the root of the problem; it was so arduous for him to DO stuff that he just gave up before he really even began, and just became super passive (and he does have a very mellow temperament, which I'm sure contributed as well). Now that he is overcoming that physical barrier, getting stronger and more able to move around and have command over his body, it's like the world is opening up for him. He is curious and pesky, just like any other kid his age, and oh how we welcome that!

More than anything, he still lives up to his nickname, "Mr. Delightful". I have never met anyone who is just so darn happy to be here. Through all of this, he continues to light up our lives, Mielle's included, in the most special way.

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