Information Overload...

I thought this picture was appropriate for the stories that follow. I am posting a few long entries at once, we’ve had a very active couple of weeks with a lot to report, including our trip to New York City last weekend to see Marcy, the ABM Guru. I actually wrote an update on Saturday while we were there, but wasn't able to get it posted until now. Get ready for some reading, if you’re still interested! To start at the beginning, start at the bottom with the June 12 entry and work up.

Here's a few things we are seeing already from our therapy weekend:

• His left arm is extremely loose... noticeably different and improved in just a week.
• Today he played peek-a-boo with me completely with his left arm covering his eyes (without the splint on). And I didn't ask him to use the left. :-)
• His legs are little floppy, flexible legs like babies are supposed to have. I can really tell when I sit him on the bed, he is so much more flexible and his legs can cross in the sitting position. A lot of this is Carla's work, but this is a long way from his rigid inflexibiilty from several months ago, and more noticeable since New York.
• We've noticed he is trying to balance himself more when sitting -- he never associated using his arms to balance before, but after Marcy worked on this, he is a lot more aware of his ability to control. This happened almost immediately in the hotel on Sunday, he was sitting on Bran's belly and using his arm out to the side to stabilize.
• Even more speech, mimicking, and babbling than the week before. He's been remarkably happy and eating well (although I personally attribute that to diet)
• AND -- Lucas can now say "ohhhh" (thanks to Marcy, not the speech therapist!) :-)

Pretty exciting!

Ophthamologist Appt

Here are a few things from this week... We saw the ophthalmologist on Monday and I think we have some answers on why his eye is dropping so much on the right (which we now know is not a result of fluid pressure, but looks very similar). She thinks he is using vision in both eyes, but not together. He is actually shifting his vision from one to the other… and when he is using the left eye, the right eye floats downward. When he is using the right eye, the left eye is parked at the side (which is why you see so many pictures of him looking to the left). She said he has “gaze palsy” in the left eye and the left is actually the one considered more damaged. This is the one that had the 3rd nerve damage last year after surgery causing his pupil to be hugely dilated all the time and the drooping eyelid. Although his pupil and eyelid are MUCH better than a year ago due to the nerve repairing itself, it is still not back to normal. She sentenced us to patching one eye for four ours a day. Ugh, I was so hoping we could avoid that one. She said if we don’t do it, the brain will give up on the left eye. Basically, as one eye functions, the other one gets lost.

Its interesting though, she only wants us to work on the left eye, and the one to us that appears most normal. Its the right eye floating downward that we see more often, which would indicate to me that it is the weaker eye. Seems opposite to me, but I have to trust the advice of the specialist (we are also considering getting a second opinion). I’m just happy to confirm that he appears to have some level of sight in both eyes, as this has been in question.

So we tried the patch last night with a sample she gave us…it has adhesive all the way around to supposedly keep young kids from pulling it off. Well, it took him exactly two seconds to get it off, little stinker. I was able to get him to wear it for about 10 minutes, only due to working very hard to distract him with songs and games… but every second he had a chance, he’d reach up there and pull it right off... and then hand it to me like a little gentleman, of course! Four hours, huh? I ordered a different box today, hopefully we’ll have better luck with the new ones! We will also have muscle surgery this summer to correct the misalignment on the left, which will correct him parking his eye to the left corner all the time. I don’t like the thought of it, but she assured me its pretty non-invasive and a quick recovery. At least we have a remedy, I’m very grateful for that! I hate not knowing the cause of something -- I don't like ambiguity -- I like answers and to take care of things. I’m glad to know she may be able to help his vision in the long run. We go back in a month for a checkup and will set the date for the surgery.

One VERY cool thing happened at that appointment for me... when I checked in, they asked me the standard questions and handed me the prescription form. Every single Children's visit start with a prescription drug form where we have to fill out the drug, dosage, frequency, and reason. Even if we have three appointments in a day, we have to fill this out three times. Kind of annoying. I've never figured out why they didn't just keep it on file and ask you if there were any changes, like they do with the rest of the information, but whatever. Its just a pain sometimes to fill out with one hand and a squirming baby in the other... and it has been quite lengthy at times. Well.... I got to sign it and check the NO PRESCRIPTIONS box!!! Wahoo! I never thought we'd see the day that he was med-free, but we finally hit it. Last week I ran out of Prevacid (his remaining med) and didn't get it refilled right away, so I thought this may be a good time try to see how he does without it again (4th try). He seems to be fine without it, he's not averting eating like the other times we've tried. What a milestone!!! (*We're still on Periactin to increase appetite two weeks on, two weeks off... but it is an off week now... that still counts as med-free, right? Since that one is voluntary and not mandatory for a medical condition, I don't count it!)

We also removed the "night feeding" two weeks ago, so Bran and I are no longer tiredly waking him up at 11 or 12 at night to get the last few ounces in. Its been so nice. We thought we'd see how he does, its really time to stop having to do that. The true test will be when I get him weighed next week.

Back From The Big Apple

We are back from NY and a truly fabulous weekend. Aside from the great things we saw in therapy, it was just a cool weekend to be away together… pushing Lucas in the stroller through the bustling streets of NY, walking through Central Park, grabbing fresh fruit at the street market, going to restaurants and putting Lucas in a high chair and ordering real food off the MENU! So liberating not to have to carry around containers of baby food and ask someone to heat them up! I told Bran I felt so “normal” and I loved it!

Yesterday we got to see Lucas take his first lunge of a combat crawl on Marcy’s table. He initiated pulling his leg under as Marcy stabilized him, and then pulled himself out to the toy. I cried. I don’t think anyone that has not walked in similar shoes could possibly understand the feeling of watching your child do something you thought they may never do. I felt so proud watching him do these new things or when he'd do something funny to make Marcy laugh, and then I'd look over at Bran who was beaming as well through every session. And Lucas was just so cute and comfortable… every time there was a break in concentration on the activity with Marcy and he'd notice one of us (I was on the side, and Bran was at the end of the table), he’d give a big grin and say, “hiiiiii!” Or, "hi...Dada". Totally melts your heart.

We were really sad to leave at the end of this very anticipated trip. We'll continue to work with Carla (with Marcy collaborating with her on what she did) and we may go back to NY in the fall. Marcy told us on Sunday that she needed to work out a visitation arrangement with Carla because it was unfair that Carla gets to see Lucas all the time. Ha. He is quite the little charmer!

Attempting the combat crawl!

Stopped for a scenic picture in Central Park

We're going to get that balance thing!

Shopping at the street market... and tuckered out

ABM in New York

Warning, this is going to be a long one...

Is there a higher or more powerful word to use than “proud?” If so, I need to use it to describe how I’m feeling today. I’m writing this from our hotel room in New York while Lucas is napping, here for a weekend series ABM appointments with Marcy (one of the highest level practitioners and trainers for ABM specializing in special needs children). We arrived on Friday morning and have had three of our six appointments so far. I am overwhelmed with excitement, with hope, and emotion. I’ve always found it interesting in this journey how these doses of hope come at the most needed of times. Call it divine intervention, call it life lessons, call it karma… whatever the reason, I’m so grateful when it happens, like a needed embrace that reassures me that everything is going to be ok. It gives me faith that we are making the right decisions for him. There isn’t a day that goes by that I don’t second guess myself in some way, it is a such a huge responsibility making decisions for him that could make the difference in him being a “part of life” or “living life.”

I’ll be honest, building up to this weekend, I’ve been feeling restless with Lucas’ motor progress (or lack thereof). We made a leap of faith and large financial investment into the ABM thing six months ago, and although we are seeing a lot of positive changes in him, I’ve become impatient with not seeing him hit any major milestones. Its been frustrating that at two years old he’s still not sitting up, doesn’t want to be on his belly at all, and is nowhere near crawling. And I can’t describe the dagger to watch other children much younger than him walking around (and now even micro-preemies that have passed him). Just last week I thought to myself, I need to start coming to terms with the fact that he may be in a wheelchair. Everyone told us that he would have CP, maybe I didn’t want to listen or accept what that meant. After all, there is such a fine line between being positive and believing in something, and being in denial. Maybe I’ve just been in denial?

I’ve always known we have to trust this process, but sometimes its easier said than done. Let me be clear though… I have the utmost respect and admiration for Carla (his ABM therapist in VA) and this method, and she’s one of the few people that we work with that I truly trust. I know that she is creating the building blocks for him to hit the big milestones, and we have absolutely seen some very good things. But it is a long process and its not easy to be patient (especially when you have doctors and therapists that are skeptical of a method they know nothing about). Its like the argument of natural medicine versus traditional western medicine… they’re both right, it depends on what you believe is best for your situation. And with everything that we know about this method and why traditional PT approaches fail, we do believe that this is the right thing and why we continue to press forward. Patience and trust are not always easy to practice.

**Ok, so what’s been happening here… Marcy is wonderful! Carla told me this week that she would only give Marcy the basic background on Lucas, and let her make her own assessment on where he is and where he needs to go. In the first session yesterday, she said several times that she sees so much potential in him. Lucas was instantly comfortable with her and charmed her within the first few minutes with his tricks and constant giggles, and verbalization of a hundred ways to say, “hieeee!” He’d get her laughing and she’d look at Bran and I shaking her head saying, “he is something else!” She was impressed with his language comprehension and pointed out that this level of comprehension and his sense of humor are true signs of intelligence and potential. She said, “I can tell there is so much going on in there.” (I have to put out a disclaimer again that I’m not saying “my kid is so smart.” I know every parent can think at times that their kid is the brightest and most talented. That is not what I’m trying to communicate. Its just an incredibly hopeful thing to hear when your child is missing 20% of his brain and the remaining healthy tissue attacked by meningitis. Showing these signs of learning capabilities and intelligence is a HUGE thing (especially when you’ve witnessed all that we have while sitting in the waiting room of the Children's Neurology Clinic and how brain injuries usually manifest.)

She was particularly impressed with how well he was transitioning from lying to sitting up (with her help) and how quickly he picked up some of the techniques she introduced. Then she said some magic words, “I think he’ll be sitting up within the week.” WHAT?! Bran and I were thinking the exact same thing…I thought to myself, How incredible! But don't your hopes up for this week. And Bran told me afterwards he was thinking, That would be incredible... but ANGIE, please don’t get your hopes up for this week. Ha. He knows me too well.

Not that I’m holding her to “next week,” but this is awesome… a) there are some that were not convinced he’d be able to sit unassisted, and b) sitting is a major first step to the next pieces that should follow. With ABM, they do not want children sitting before they can transition themselves in and out of it (they don’t want a child in any position that they can’t get in and out of themselves). If we had stuck to our old PT approach last year, he would have been sitting a long time ago (he could sit for several seconds in November prior to starting) – but very rigidly, with no movement of his ribs or back, or ability to get in or out of it. They were forcing him to sit and asking us to stretch and push his knees down to the floor (which was doing nothing but make him mad, ultimately). She explained to us, kids that learn to sit up without all the building blocks end up using the wrong muscles to do it… they use their stomach flexors, which is not what you are supposed to use to sit. You need your back muscles and your entire spinal column to work together to hold in a sit. If you learn to sit by only tightening your stomach muscles, then the next milestone becomes nearly impossible, or not done correctly (i.e., crawling or walking). The same holds true about being forced to stand in a standing device… in a stander, kids do not develop the right muscles in order to help them stand unassisted – again they develop the stomach flexors, which is not the right muscle group for standing. She said forcing kids into a stander is a sure way to give a kid scoliosis (reminder—that our old therapist last fall recommended that Lucas should be in one, because he was of “standing age”). There is a reason that we all learn to sit and crawl before we walk, not just muscular, but because of the brain’s necessity to learn the movement for building on. I know a few kids from my preemie group that through traditional PT got to walking quite quickly (which is great), but now are in grade school and unable to do things like jump or swim that require back movement and coordination. This is the result of skipping building blocks.

Here’s a picture of a stander if you’ve never seen one. Kids are strapped into it. Disclaimer: weight bearing is important for bone development, so I’m not saying standers don’t have a purpose in the right situation (especially for children with severe neurological conditions where walking is not an option). However, because Lucas can control his legs to do specific ABM exercises and movements, he is developing the hip sockets without forcing him into a stander and ultimately damaging his immature back in the process.

I always wonder how many children are wheelchair-bound today because their brains were never given the opportunity to learn the proper way to use the body in the beginning? Everything in our motor development is built upon small pieces…when you skip things, you cannot properly build on what is necessary. Extremely premature children (and especially with brain injuries) often skip these building blocks. Typical babies are moving constantly in the first several months, and the brain is mapping itself at an extremely rapid pace. Brain injured children can’t map and organize movements, and therefore, the brain even recognize what the body can do. Therefore, it remains still, and rigid. This is especially true of Lucas’ left arm… if left alone, it would eventually become completely immobile and stiff (it was already becoming quite stiff this past year). ABM helps the brain learn these early movements and transitions, as building blocks to make the big milestones possible.

A few other things she said that we thought were interesting… she was working on his mobility in the front part of his legs and hips and commented that there wasn’t much range of motion. She said this is why he hates being on his belly. When there is little flexibility to pull the legs back, you can’t easily lift your head and upper body. No one has ever pointed this out before, and it makes total sense. Then consider that he hasn’t wanted to do any weight bearing on his left arm, of course he’s not going to want to stay on his belly. So her goal is to get the legs more fluid, and the tummy will come naturally. She showed us some adaptive techniques for tummy play to make it more comfortable for him (and the only way he should be on his belly until the rest of his body is ready).

So we had two sessions yesterday and one this morning. She worked a lot on his left arm through play and games in the second session yesterday. Lucas is already showing changes today. When he sat up on her table, I swear he grew two inches. We are so used to seeing his spine slouched over, and today his spine was standing tall. His legs were more legs flexible as he laid on his belly and his left arm is remarkably more fluid. As he laid in his adaptive tummy play as she worked on his legs, he supported himself with both arms out to reach for the toy (typically the left is pulled inward). She said as we left today, “I couldn’t possibly ask for him to be responding any better. He is learning very quickly.”

I realize this may all sound a little hokey if this is the first time hearing how the brain learns and responds, but trust me when I say that this all makes sense after all the research and education we’ve received on the brain this past year. I am reading a book right now that Carla gave me called, The Brain That Changes Itself, a collection of true stories about people that have overcome brain injuries due to its never-ending plasticity and ability to utilize and map other areas. Its truly fascinating.

A couple quick interesting things about Marcy… she is also a voice teacher, which led her to ABM therapy many years ago due to its focus on movement in the torso and vocal benefits. She dedicates most of her time to traveling for ABM training and her private practice for children, but still works occasionally with Broadway and Opera singers. She got John Lithgow ready for his Broadway work on “Dirty Rotten Scoundrels,” and has done a lot of work with Carol Kane. Pretty cool. Yesterday we talked about Lucas’ speech and how he doesn’t articulate some of his vowels, like “ohhh" coming out “uhhh”. She said it has everything to do with the mobility in his chest. It all works together. As this improves, so will his articulation. She showed us some techniques to help him articulate "oh", and he was giving it a good try by the end of the session. We told her about Lucas hearing Spanish all day from Mirna and how he comprehends everything in both languages. She thinks this is great, and told us what we’ve heard before… that kids that learn multiple languages at this age will be later in expressive language (but its worth the wait because of all that they are learning). Go figure! So much for the speech therapist from last week!

Marcy shared a couple of inspirational stories with us today… she works with a little girl that had to have the entire right hemisphere of her brain removed due to seizures. She had to get her brain to remap itself to not only recognize her entire left side, but to use it functionally. This little girl can walk today! She works with another little boy who has a genetic disorder, missing a chromosome. Hardly any child with this disorder ever walks, and in fact the child’s mother went to a fundraiser for this disorder recently, and almost all the children were in wheelchairs. We met this adorable 4 year old today, Sebastian, while he was walking out of her office, and he stopped to say hello to Lucas. Amazing… absolutely amazing!

I told Bran as I sat down to write this update that I felt that I could write for hours if I dumped out everything that was in my head after the last 24 hours. I am so full of hope and emotion, I can hardly get it all out. Today I feel like one of the luckiest people in the world, that I get to experience being a mother like this. Sure there are days that I get sad and down that our life with Lucas is harder or non-traditional… but then I realize that there is only a select group of us that get to witness these kinds of miracles from the front row. He’s our boy, and we get to feel this amazing sense of pride and intense rush of admiration. I can’t think of anything else in life that could be more inspiring.

We’re off to our next appointment, and a walk afterwards in Central Park a few blocks away. I just love NYC and the energy here! And Bran confirmed that he does fit right in with the driving!

****
Because its so hard to articulate how ABM works, I thought I'd include a description from their website. (I always promised to tell more about it in previous postings). This method is not just used for the brain injured, but for other neurological conditions and learning disabilities, as well as with healthy adults for various goals.

Where in traditional therapies there is great emphasis on trying to get the child to do what it is supposed to be doing based on his or her age, With the ABM a very different approach is taken. Rather than try to fix the problem directly by focusing on the child’s
limitations, be it stretching a short tight muscle, practicing reading over and over again, or telling the child repeatedly how to relate to others, the focus is shifted to where the solutions actually lie – with the brain.

Everything we see a healthy child do is an end result of a complex process of differentiation in the brain that allows it to form new connections and new patterns. All the experiences the child has, be it her own initial random movements or all that is done with her by those caring for her, are used by her brain as information with which to develop and grow. When there is a problem like a stroke, autism, cerebral palsy or a genetic disorder, this spontaneous process of differentiation and formation of new patterns in the brain is interfered with and the child manifests a host of limitations. Most therapy approaches attempt to make the child do what it should be doing according to his or her age and expected developmental stage. However, forcing movement on a spastic arm, stretching a short tight muscle, or placing a child that cannot sit in the sitting position with the hopes that somehow he or she will get strong enough to do it, normally produces little of the desired outcomes. It is because the brain is unable to transform the stimulation into information with which to create new patterns that are necessary to bring about the desired changes. The ABM focuses on helping the brain do its job better. It helps the brain right itself and regain its ability to powerfully and consistently create new patterns and successful solutions.

Working on his legs and back

Lucas thinks most things are a funny gameHere's the very cool building where our appointments were, "The Ansonia." This was home to Babe Ruth during the 1932 World Series, when he famously called "The Shot."Chilling out with Dad between appointments Day Two... Working on getting in and out of sitting

...And playing a game in between all that work!

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.
.
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.

.

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!