Verbal Little Man

Verbal... that describes Lucas right now! Over the past two weeks he’s become VERY expressive, babbling all the time. He would repeat after us with “Mama” and “Dada” starting last fall, but it seemed like that was his limit for a long time. It wasn’t until I’d hear my friends’ kids babbling and initiating sound a lot more, that I realized how quiet he still was. That has all changed... he's now constantly talking! And saying all variations of “hi”… “hieeee”… “hiyiyiyiyi”… He now says "mama" and "dada" more purposefully instead of just repeating, and last weekend made his first attempt at one of the kids' names, saying “Anna”… or “na”.

Is this recent change because it is his just time to be verbal…. or is it because we made the diet changes and removed dairy? He’s late on expressive language, but its certainly interesting timing that all of a sudden he’s talking a LOT more. That is one of the documented outcomes for autistic and special needs children when dairy and gluten are removed. We’ll never really know, but it’s certainly thought provoking.

We had the first speech evaluation by the county therapist on Thursday, it was kind of a joke actually. She didn’t “evaluate” anything with him, I don’t think she even talked to him. She spent the whole hour asking me questions. I wondered at the end why I had to leave work to meet her at home for this appointment, I could have answered all of this about what he comprehends and says on the phone with her.

She was a bit argumentitive with me when I told her the level of his comprehension (which is quite vast in English and Spanish). He understands a lot, can sign several things, answers many questions, has tricks to point to things, etc. It was painful, as if she didn't trust my answers... what am I going to do, lie about the number of words he knows? At the end she didn’t really have any “speech” recommendations to enhance his expressive language, just that we should teach him more signs. What?! I thought you were a speech therapist! She asked me what my goals were for him...more signs or more speech. Is it just me or is that a really dumb question? I mean, I love that he can do several signs to communicate now, but that's not what we utlimately want. Ummmm, I choose speech?? I told her I had no reason to believe that he wouldn’t talk, he’s just late… like everything else. He's mimicking beautifully, which is the first step, and now communicating with tiny words. She was unimpressed with his new expression of "hi", just told me that at over two years old, that he should have 100 expressive words in his vocabulary. I remember my step-brother when he was two, all he said for awhile was this cute little “hi…hi…hi” for everything. He was a completely healthy child and is now a very bright college student making straight A's. Why is Lucas any different? I feel like they are just looking to label deficiencies due to his history. Its kind of like when doctors just automatically assume brain bleed = can't eat on his own, won't walk, talk, etc.

She said a few times, “but he’s over two.” I said again, “he’s nowhere near two, he’s about one developmentally due to his injuries and many surgeries last year.” She said, “well we don’t correct at the county level, so we consider him two, and therefore he’s really delayed.” Ugh, if I hear one more freaking time from a therapist that, “he’s two years old, he should be doing xx”, and then marking him as “under par” and a problem for his age, I’m going to scream. I’m so tired of this concept of catching them up… they are not going to “catch up!” They are going to get there (albeit late) by going through the stages and steps like everyone else, and they will get to 10, after they’ve completed steps 1, 2, 3, 4, 5, 6, 7, 8, and 9! This is not a game of Sorry, where you land on 2 and get to slide to 10 in one step, all kids have to go through the same steps!

I also told her that he is learning Spanish as rapidly as English and that I’d heard that kids were later to speak when they were learning two languages early-on. She didn’t really concur or seem impressed that he knew so much Spanish, just said that “Lucas is very late for two years old.”

After she left, I talked with our nanny about what the therapist said, and she was just as defensive as I was! Ha. Lucas can point to 20 or so body parts on command of either word, comprehends all phrases in both languages, and can sign for everything hearing either language... and she said that kids older than him at the park (with their Spanish speaking nannies) don’t know both languages! She said the other nannies comment all the time how impressed they are that he knows so much in both. So… there is NO doubt that he’s on par or over the mark with his comprehension! I am not worried at all that the expressive will follow in time.

I told the therapist that I noticed when he tries to imitate certain words, he does not articulate properly. Like when you say “uh oh”, he’ll repeat, “uh uh”. He can’t do the “o” sound. He’s probably just being a normal kid learning to talk, but when do you know when it is a speech problem and needs early intervention? She didn’t seem concerned, nor did she have an answer or advice. She just told us to add four new signs a month. She said she’d come back in three months and start therapy when and “if” he has more words. Ugh.

Another update from that appointment… I mentioned she gave us the honey bear and big aquarium straw to help him learn to use a straw last time. Well, he didn’t like it after a few tries so I decided to try a regular ol’ juice box with a tiny toddler straw. He did it on the first try and every time after that! Its so much easier for him with the tiny straw than getting all that fluid from the large straw. He doesn’t take successive drinks yet, but he totally knows what he’s doing with a straw. He even took a few sips out of an adult straw the other night at a restaurant. So much for therapeutic approaches! I told her this when she was doing the speech eval this week. I could tell she didn’t believe me and wasn't happy, she challenged me on why I didn’t continue her recommendation... reminding me that "there was a reason she wanted me to use it to teach him the proper use of his mouth sealing the straw." I told her I thought he was doing it well on his own, so I showed her at the end of the appointment… she said “wow, he did it perfectly!” Yes Joan, that’s what I told you.

She also questioned our decision to remove dairy from his diet, and I felt myself on the defense trying to justify our position. You would think someone in her position working with special needs kids would be familiar and understand, as this approach is certainly not new and is widely used. I finally gave up trying to explain and figured it didn't really matter if she was on board or not. I absolutely believe we are doing the right thing with his diet after seeing his changes the past couple weeks... and the skin patches he had are completely gone (without the use of pharmaceuticals or lotions...just diet).

Sorry if I sound cynical, I have just grown very tired of therapists lately and their textbook approaches (this excludes our wonderful ABM therapists). I think the speech therapist officially goes onto the “not welcomed back” list! I really appreciate all the wonderful advice we’ve received over the past year (after all, not many people get to have a bunch of child experts weighing in and giving developmental advice at every step)… but its so exhausting sometimes. Sometimes I just want to raise our child the way it was intended, and to follow my instincts.
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Enough of that... New York City, here we come! We decided to drive instead of take the train like we normally do. Bran can't wait to drive in a place where it is perfectly acceptable to cut off other cars, honk your horn, and yell at other drivers!

Here's a few pictures from a couple weeks ago at the pool, he's getting very comfortable with the water now!

Swimming with Daddy

Fun being thrown in the air!

Playing motor boat

Hanging with Anna & NicholasAttacked by all the kidsGetting some sugar from Abby

Good MRI News!

I think all the prayers people have been sending our way worked yesterday... the MRI was nothing but good news! Everything with the shunt is working properly and, in fact, the ventricles on left side of his brain are completely minimized to a "normal" size. These two ventricles have been getting smaller with each scan over the last year (and looked pretty good three months ago), but this time they are completely condensed and look even better. The right side is slightly smaller too than last time, and we're probably close to the final way it will look. There is still a large tunnel missing that spans from the middle to the front, but its nice to know there's been even more improvement on the right since the last scan.

Dr. Yaun was genuinely thrilled to give us the news. She told us that she has been nervous all week with him coming in, that she does NOT want to have to operate on him again. The first thing I said to her was, "Am I just crazy for seeing things in him that make me suspicious? Can I just not relax with this shunt?" She said she absolutely believes that I'm seeing changes in his eye and understands why I would be suspicious of pressure, and she feels that there is just something else going on (and wants us to follow up with our ophthamologist). She made me feel better (or less like an alarmist) when she told Bran, "Angie has always had a really good eye for picking up ealy signs in Lucas, she's seen things and been right about it before anyone else ever notices." So I guess I'm not completely crazy. She also told her resident that was in the room with us, "Lucas is very tricky because he has an amazingly high pain threshold, it is really hard to figure out when he's in pain so you have to look for other signs." She told him "this kid has come in with CT scans that would make you think he should be in great pain or even passed out, but he has been sitting here with me an hour before surgery smiling and laughing." Yep, that's our happy boy!

I told her that leaving the last surgery in November with the shunt catheter in the wrong place has had me on edge (she said, "me too"). But she said that you just can never tell... she's had catheters that are in the model place, ones you could take a picture and put it in a textbook...and two weeks later they will fail. Then you'll have ones like Lucas's last year, where it shifts into the most un-ideal place (his shifted against the wall of the ventricle four hours after surgery instead of staying in the middle), and she's seen the "embarrassing ones" (her words) work for 10 years! Go figure. She feels that punching holes in a lot of the membranes last surgery that were causing trouble is why it is working well now. I don't really care what method worked... as long as she never has to go in and do the really invasive surgery to cut out the membranes, I am thrilled.

Another thing that made me suspicious this past week (in addition to his eye dropping, lack of appetite, additional sleep, etc.) was that last week our Cranial Sacral doctor was working on his head and said, "has his shunt always been this protruding?" I hadn't really noticed anything different, so it was a surprise to me. He said it felt different to him (and he's the bone doctor who makes the most precise shifts in tiny bones... he would be one to notice). So for the following week, I have been feeling his head, noticing that you can now feel every piece of the shunt... not just the bubble valve, but the connections, the wiring, etc. This had me very nervous as well. Dr. Yaun gave us the most sensible explanation... swelling and scarring can be present around the shunt for a year or so, making it feel more like one smooth lump. Eventually the scarring can settle into hardware of the shunt, and swelling diminishes, making it much more prevalent. Makes total sense! Ok, now lets all relax.....

We were due anyway for a checkup, so it all worked out that she got us in for an MRI. She said the stars were in alignment, because she is booked until September for MRI's but one opened up at the moment I called last week (remember, too many CT's carry risk with radiation, but MRI's do not). We will see Dr. Yaun in three months for standard checkup, and in 6 months for another MRI (she wants to give him a break from CT's for awhile and do an MRI next time).

A quick funny story from yesterday... this is the first time in awhile that he's been put under that hasn't been associated with surgery where he would wake up in pain, and the last MRI was over a year ago when he wasn't verbal. They expected him to take 45-60 minutes to wake up after the procedure, but he actually woke up in 10 minutes and tried to sit up to look around. The nurse told me I could hold him, but to expect he'd be a little drunk and to hold his floppy head. As he started to wake up a little more and jabber, I asked him to say "hi." (He just started saying repeating "hi" this past week and it is so darn cute.) He was all smiley, and repeated in his loopy state, "Hhhhhiiiiiiiiieeeeee"...then he giggled. He sounded like he'd had about ten drinks. We cracked up, it was a nice to laugh after the MRI was over and know he was ok, when the morning had started very emotional having to watch him being put under.

It goes without saying that the clouds have lifted. Its amazing how different I feel when I don't have to worry about the shunt and surgery. When he's ok, everything is right with me.

Precious!

How precious is this picture?? Elle is getting her first kiss from a boy! My friend, Courtney, and I had sessions with this great photographer on Sunday and she snapped this picture at the end. I especially love this picture because there is a story behind it... Elle was also born at 25 weeks, weighing 1 lb, 6 oz, and spent five months in the hospital too. Courtney and I share a special friendship through this experience and she has been a great support to us. We really understand what the other goes through--past and present. Its so neat to see these two together. Lucas is usually intimidated by other babies because they move so quickly or are loud (he typically cries if they reach for him or are in his face). With Elle, its different, he's interested in her and is not afraid. He didn't hesitate when I told him to give her a kiss. Its like he knows she's safe and as Courtney has said before, "they're going to have each other's back." I kept thinking as I watched them this weekend, how amazing they both are. You would never know by looking at them today that they had to fight so hard to be here.

I don't have the rest of the pictures yet, she just happened to post this one yesterday. I'll share the rest when I get them. I've attached a few below that the same photographer took last month at the Cherry Blossoms when they were in bloom here in DC. We had them done for the grandmothers for Mother's Day, but just got around to ordering them (delayed, as usual... the story of my life)!

A few activities since I last posted... we saw the plastic surgeon last week to discuss having the surgery on Lucas' nose this summer, but I think we're going to wait another year or two. First, he told us that he'd love to do the surgery but that he was leaving Children's National to take a position as the Head of Plastic Surgery at Children's in Akron, Ohio. I know... what? Ohio? We're sad because we really like this guy (and all the other doctors we've talked to that know him say nothing but great things about him). I guess that's what happens when we have the "best of the best" doctors at the National location... they're a catch! He referred us to another doctor, but said that he is more on the conservative side, so it is likely that he will want to wait for Lucas to be bigger. We are really torn because there is really no good "developmental window" for this, because they will have to splint his arms for three weeks to keep him from touching his nose. We talked about it with our PT, Carla, and thought that this may be a good time because he's not using his arms much for crawling yet... and where in several months, he hopefully will be. But, there is the argument that it is better if the nose is more grown and more likely that they'll only have to do one surgery. If they do it too early, it is possible they would have to go back in and do an adjustment later. So... what to do? We're not sure yet, but it is looking like we're going to wait. We see the other surgeon in a couple weeks and will determine it then.

We saw our holistic pediatrician (Dr. Razi) again last week, Lucas woke up with a slight rash on his back and he's been showing dry patches of skin around his hairline and the area is getting bigger. I decided to take him to her rather than the regular pediatrician, with the suspicion that it had to do with food. She's awesome, by the way... I called her office in the morning to make an appointment, and she calls back. Not a receptionist or office worker, it is the doctor herself. She asked a bunch of questions, then we made an appointment a few hours later. She asked me to bring a list of everything he eats. I was worried about this because I know that we are on this mission to "fatten" him up, which I know is not always the most healthy food. Even the GI tells us to give him very high fat, non-healthy foods because weight gain is more important than nutrition right now (which totally conflicts with other medical opinions). Seeing Dr. Razi is not clinical at all... she is so sweet and personable with him, its like I'm taking him to a relative. We spent the whole hour talking about family history and the food he eats. Then she dropped the biggest challenge on me yet... remove all dairy and as much processed foods as possible from his diet. Dairy?? All of my "cheat sheets" on fattening him up contain butter, cheese, yogurt, adding powdered milk, etc. She went on to explain how difficult dairy is to process and that it ultimately restricts blood flow. And for a special needs child, blood flow is especially important for the brain. There are other ways to get protein, calcium, and vitamin D... it doesn't have to come from dairy.

She told me that if she were a researcher, she'd have case study after case study of children she sees that have completely changed after removing dairy... they are strong and healthy kids, and neurologically improved beyond her expectations. If anyone has followed Jenny McCarthy in the media and her messages about nutrition and Autism, this is very similar. Removing caisen (dairy) can have an amazing impact on the brain and behavior. I believe it wholeheartedly, its just going to be hard to make the change, and it will require adjusting the way we eat too. We've been at it for almost two weeks now and its going pretty well... Lucas' diet has to start with a base of brown rice, quinoa, couscous, barley, etc., and then vegetables (preferrably yellow), and fruits. Some meat is ok, but not every day. I found out this weekend that the boy LOVES fresh cherries... how about that, Mom? Grandma would love that! My grandmother had a cherry tree in the front yard and as a kid I loved to eat them right off the tree... or when they weren't in season, she'd pull out frozen ones just for me that she'd canned the year before. Kind of like the nastalgic black eyed peas thing for Bran! :-)

So, even though we were already eating pretty healthy fruits and veggies, no more processed food, pasta, nutrigrain bars, yogurt, mac & cheese, graham crackers, etc... she wants only natural "straight from the earth" foods. No minute rice either (which zaps the nutrition from processing). So, I bought a rice cooker and have been becoming a regular Whole Foods shopper! I was putting things in my cart last weekend from the doctor's list that I had never even heard of, let alone ever cooked! I have to admit that although a lot of it is foreign to me (...like what the hell do I do with quinoa?), I am excited about the possibilities and am totally up for the challenge!

The doctor told me she bets by removing this from his diet, that the eczema-looking patches will probably go away. I have to tell you that already in a little over a week, the area is becoming smaller and smaller. I know that if I had taken him to the regular pediatrician, we would have been sent home with a prescription to treat the skin instead of looking at the reason it started in the first place. How many times do we treat the symptom with medicine and chemicals instead of treating the cause? This is exactly why we changed to the ABM therapy, which trains the brain (the root cause of the motor issues) rather than treating and stretching the tight muscles (the symptom of the issue). I still have a lot to learn, but I've become fascinated by natural remedies. I truly believe that people come into your life for a reason, and I have been blessed this past year to cross paths with some amazing ones.

On to some not-so-great news... we're scheduled for an MRI early tomorrow morning. It is time for Lucas' checkup with the Neurosurgeon right now, but I'm also seeing some behavior in him that makes me suspect another malfunction. When I called Dr. Yaun last week, she decided rather than expose him to more radiation with a CT, that she'd give him an MRI slot that just opened up. This will also give her a much more granular view of the ventricles, something she's been wanting to do anyway. I've been wrong before on this, so I'm trying not to jump to conclusions... but I've also been "right" on my suspicions more often than wrong. And the closer we get to the test tomorrow, the more he seems to be showing symptoms. I hope I'm wrong, but if I am not, there is a chance we'll be doing another shunt surgery. I'll try to post here tomorrow after the scan to let everyone know the outcome. I sure wish he could get a break with this... most kids go years without a shunt revision, Lucas can't seem to get more than six months.

I just hope that if we have to do it, it will be this week. We are scheduled to go to New York next weekend to see the Anat Baniel practioner, Marci. She is an ABM trainer and one of the best in the Nation. She is only person that Anat (herself) views as her equal. We have talked about taking him to see Anat in California (which many travel from all over the country to see Anat), but New York is a lot more convenient (3 hours by train). Our ABM PT, Carla, highly recommends supplementing treatments with Marci because she is so good. She's sent a lot of kids to her and said they have really catapulted to the next level after being treated by her. We've been excited for awhile and she's tough to get into, so I definitely don't want to have to reschedule several months out due to surgery. She is scheduled to treat him twice on Friday, twice on Saturdy, and twice on Sunday. This won't be a typical New York City trip for Bran and I with sight seeing, restaurants, and shopping... but it will be a special trip nonetheless.

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Here are the cherry blossoms pictures... these were supposed to be of just Lucas for Mother's Day, but it was a short 20 minute session and since he can't quite sit up unassisted yet, she decided to shoot most of them with all three of us. I'm ruining the gift for our families by posting these before you've all gotten the prints we ordered, but what the heck.

Not the best view, but the tree is pretty

Happy Boy

Mr. Serious

Kisses from Daddy

Little Ham

I love this one...
Come on, Mom... I am done!