Things Are Looking Up

Has it really been 2 ½ weeks since I last posted and is it already Christmas week? Sorry! Time is flying by, things are very busy at our house between getting ready for the holidays, with a major increase in appointments for Lucas’ new therapy and other follow ups this month, and Bran and I are both trying to close out contracts before the end of the fiscal year. The good news is there hasn’t been any drama to report! Its probably safe to say that if I haven’t posted in awhile it means things are going ok! I’ll try to hit the high points from the last two weeks… and there have been some really high points!!

Lucas had his follow up CT scan with the neurosurgeon a little over a week ago. I can’t tell you how nervous I was going to that appointment, I just can’t relax anymore about the shunt, especially since things were left dangling from the last surgery the week of Thanksgiving. Dr. Yaun came in to say hello, and said she was going to look at the films and be right back in… and then she was gone a very long time. I sat there with a pit in my stomach the whole time, coming up with all kinds of scenarios in my head. She finally came in with a huge smile on her face and said, “This CT is his best one EVER!” She was so excited to tell me, and I couldn’t help but cry (as I’m doing right now thinking about it). All good tears! We looked at the scans together and everything looked better than I’ve ever seen it. The left side of the brain looks full and as close to “normal” as it can, and the right side has had a lot more brain expansion. This is the first time ever that all four ventricles are draining properly. Looking back over the last year and a half, Lucas has always been under some kind of pressure. It is kind of ironic because I could clearly see in the pictures that the catheter is in the wrong place and moved way beyond where it should be. But its working, and that is all that matters!

Two days later we saw the neurologist, Dr. Chang (it has been since the summer). Just to remind you again, Dr. Chang was the very, very negative doctor that broke the bad news to us in the NICU of the extent of his injury. She’s the one I used to hate seeing, and now I’m excited to see her! She was blown away again by Lucas. He was animated, smiling, and talking/mimicking in her office. She had a neurology student in with her and she explained to him Lucas’ history and said the words again, “Angie, I could have never guessed how Lucas is sitting in front of me from seeing his MRI last year.” I feel like she is letting on more now just how bad she thought it looked then (just imagine if she had not sensored her words last year, and if she had told us how she really felt). When she pulled up his recent CT scan, she said “This is why he is doing so well, just look at all this brain expansion!” She was very excited. And I’m so proud of him! I was able to get a copy of a few of his CT scans from the radiology department but I haven’t had a chance to load the software to view them yet. If I can get a good picture to share, I will. There was a little disappointment in the visit, she decided to keep him on the seizure meds for another three months. Although she had planned on taking him off in December, she decided since he just had three surgeries in a row, that she didn’t want to interfere with the shunt functioning well by having a seizure if he reacts negatively to coming off of it. I feel confident that he will be fine without the meds because he has been weaning since March of this year. We have never increased his dose and he’s almost doubled in weight. We have a plan in place now to wean him completely off in March 09, marking one year. I’m also eager to get him off the medication so we can give him the best chance at development. Seizure meds are designed to slow the brain down, and there is no official verdict on how the medications impact a baby’s development…but logic tells me that it has to be impacting him in some way.

I think we are back on track with weight gain, we’re trying hard anyway! Back on the medication to make him more hungry, sleep feeding at 11 pm, and he’s finally tolerating adding more Duocal to his solids which ups the calories. I haven’t had him weighed officially in a couple weeks but we can tell he’s filling out. He’s still battling the ear infection, it didn’t clear from the first round of antibiotics so we are back on them. The pediatrician said if he gets another one, he wants us to see ENT about tubes. We are already scheduled to see his ENT on January 5 about getting his tonsils out, so I’m sure we’ll cover all of that. We moved this appointment up because we officially can’t put oxygen on him because of the hazard of the tubing. He hasn’t had it for about two months and you can hear him waking up quite a bit from the obstruction. The pediatrician said that his enlarged tonsils may also be contributing to the whole system and making him more vulnerable for ear infections. Ugh, I long for the day he is completely med-free and that we have all of these things taken care of! I do feel like we are getting some relief little-by-little as he gets older, as all of these procedures and illnesses are connected in some way. Get the tonsils out… cure the apnea and get rid of the oxygen… by eliminating the oxygen need… we can his nose corrected… and hopefully eliminate the ear infections along the way. Get rid of the seizure meds (and we are currently trying to wean him off Prevacid for reflux)… and maybe we’ll hit our goal by the end of next year… med-free!

On the therapy front, all is going well. It’s a bit taxing having four appointments a week, but we are jumping in with both feet with a lot of hope for this method to work. I’ve asked our other PT to stop coming for awhile, and am going to stop OT as well. It’s been a difficult shift for us though… we have always been instructed to basically force him into positions “to make him stronger” – on his stomach and arms, sitting, all 4’s, etc. AB method wants none of that because it develops rigidity that makes it impossible for him to advance in other areas. And our traditional PT & OT want to stretch him like crazy… if his arms or legs are tight—stretch them (no matter how much he complains). This approach may work often, but is not always a successful approach for a brain injured child. AB wants him fluid, and absolutely no stretching or forcing. They feel stretching helps in the moment, but it doesn’t teach the brain to use those particular muscles so that they loosen on their own as the natural progression of a healthy and highly moveable baby. She is focusing on his core, his chest, ribs, abdomen, and back, in an effort to help the brain learn new pathways so that his body can move normally. ABM is completely against forcing kids to be in leg braces, or strapped into a stander, it is all about creating the necessary connections in the brain so that things happen naturally. I use this analogy when comparing the two therapies… traditional PT/OT tend to treat the symptoms (high tone in the muscles), ABM treats the cause (which starts with learning in the brain).

I’ll share something interesting that happened… after the first three weeks of ABM, I stopped stretching Lucas. Our PT hadn’t visited during that time due his surgeries and scheduling conflicts. Typically when I’ve stopped stretching him for any length of time (from surgery or while being away visiting family) we could always tell that he was slightly tighter in his legs and left arm. Melody (PT) picked him up and started stretching his legs and said “oh my, he feels great, his legs are so much looser that I’ve seen them before.” She had forgotten that we started ABM, and actually since then has become a little skeptical after learning how much it contradicts her methodology. I was pretty excited to tell her that I hadn’t done a bit of stretching in all this time… that we had been strictly following ABM. I could go on and on, there is so much to say about this. The most important thing to say, is that we are seeing many changes…one of them being that he is reaching and lunging for things with his body for the first time. It has never occurred to him at all before that he could go after an item or a toy. If it wasn’t sitting directly in front of him, he wouldn’t even try. This has been frustrating, since all babies are motivated through developmental stages by wanting to go after something. Now, if he sees a toy (or a remote control, as it often is), he launches his entire body out to go get it. He doesn’t have the coordination yet or left arm recognition to be able to support himself on one arm to go get it by himself, but at least he is trying with his entire body. I truly believe this has stemmed from the new method and all the attention that has been given to “wake-up” his awareness of the core of his body. He is also much looser in his left arm, it is fisted and pulled up in a rigid position nearly as often (this is one of the strict “stretching” areas that we no longer do). Maybe some of this progress is finally getting the shunt under control and allowing brain expansion… or a combination of the two. We may never know, but as long as we can get him to the next milestone (without drugs and equipment), that is all I care about.

Sorry for another long update, never a lull in activity with him! We are excited to be heading to Ohio for a few days after Christmas with all the kids, and are looking forward to some down-time off of work next week (that’s downtime “if” Bran and I can get our contracts closed before Christmas so we can relax)! I will probably not update until after Christmas unless anything major happens, so I wish everyone a safe and healthy holiday!

A Few New Pictures

Not much to update, we're hanging in there! So far-so good this week. We saw GI, and overall a good visit but she wasn't happy that Lucas hasn't gained any weight, and on top of that has lost a pound. She actually brought up the dreaded NG tube again, she said she understood what a rough couple months he's had and because of that she's not going to do anything drastic. But he has one month to turn it around, she wants him to gain two pounds in a month. So I'm back to sleep feeding him before I go to bed, trying to squeeze in a few more ounces for the day. As feisty as he's getting, there is NO way I could put an NG tube down his throat every night to feed him while sleeping! We can't even keep oxygen on him anymore because it has become a hazard with him pulling it off and tangling in it. I can't imagine what he'd do with an NG tube. No, thank you. I'll wake up multiple times a night to feed him if I have to, to avoid that!

Here's a few pics from the last month, hard to believe from that smile that he's had three emergency surgeries in six weeks!

Trying on our new snappy coat and hat

How cute is this?
Lucas with his friend, Grant

My best friend, Tara, visited us a few weeks ago from Ohio

Grant is 11 months, Lucas is 20 months... and they are the same size!

We love this vest on him... He got it last year for Christmas but it still fits!

Choo Choo Charlie. I got these bibs because he looks just like a little engineer doll that my brother would never put down when we were kids (yes, I said my brother had a doll)

His favorite toy...anything with lights and music

Playing around Abby LOVES this little guy, she's so good with him Anna and Lucas
Nicholas & Lucas. The hands hardly ever leave the mouth these days All dressed up on Thanksgiving

Made It Through

Just a quick update to let everyone know we made it through the weekend... not without a trip to the hospital on Friday, but at least it was not for the shunt! Lucas was really "off" after this surgery on Tuesday, he didn't quite bounce back right away like last time. He was very cranky and his eyes were rolling around a lot, unable to focus, moving left to right (called nystagmus), and the right eye was still continually dropping. After leaving Dr. Yaun not-so-positive this time, it was really unsettling. We got through Thanksgiving, then on Friday morning he was cried a lot when I laid him down (which every time he's had pressure, he hates to lay on his back). So... we were off to the ER again, ehhh.

After the "shunt workup" of a CT scan and five xrays, they determined the shunt was working well, and that everything appeared smaller in the ventricle and the cyst that was giving him problems appeared to be draining. So, then they figured out he had an ear infection. Ahhhhhh, what a relief! That would explain the pain lying down, and could be contributing to the nystagmus. But he didn't have a fever and wasn't particularly messing with his ear... who knew? I have never been so happy to hear that, I could have skipped out of that hospital with my discharge paperwork. Actually, that was the first time in awhile that we got to leave and not be admitted. I had my bag of overnight clothes in the car and everything, convinced we were in for another one.

It took a couple days, but today he finally seems happy again. I just hope it stays this way and the shunt keeps working. I've said it so many times, he's such a well-mannered child and so happy... just imagine what he'll do if we can get rid of all the pressure once and for all! He's really never had a healthy CT scan, there has always been something not right. Maybe now we can finally move on, and also gain some weight. He has lost an entire pound in 6 weeks dealing with all of these surgeries. That's a lot when you're only 18 pounds to begin with. And babies aren't supposed to lose weight, he needs to be gaining quite a bit to catch up, not losing! I'm still paranoid about them wanting to put a G-tube in or NG feedings to make him gain weight, I've heard of other parents having to do this when their child is this old, as a final effort in helping their development. He sees the GI doctor tomorrow, hopefully she'll cut him some slack for the last month and give him some extra time to catch up. Today he finally ate well again, so I'm hopeful.

We had two more Anat Baniel therapy session today, she said she scan feel a big difference in his chest and he is showing some new mobility. So exciting. And he loves it, he talks non-stop during the sessions. I've never heard him babble quite as much as he does while he's getting this movement therapy. He made kind of breakthrough tonight, finally pulling his left arm in on his own and recognizing it there. He was chewing on his left thumb at the end of the session (which he never does). Carla is recommending constraint therapy for his brain to start recognizing his left arm, which is what we've been talking about anyway. He has a multitude of mobility issues, but his brain not recognizing the left arm as a tool that he can use really hinders learning to move through developmental phases like a typical baby. As I said before, I need to sit down and write to explain this a little more, which I will. We decided we are going to postpone his PT sessions from Early Intervention for a few months to give this method a chance. The problem is, they counter one-another and we could end up hindering his his progress with so much stretching and pushing from PT. PT exercises have unfortunately made him very rigid, causing many problems... but the Anat Baniel method (similar to Feldenkrais) is all about being fluid and learning movement in your core before you can ever move to the next step. We are basically starting over with him, but the promising thing is there are changes happening.

Oh yeah, one more thing... he finally has his top two teeth breaking through today! I thought he was going to be toothless forever! Everyone I know with much younger babies have 6-8 teeth. He has one and a half, and the larger one still isn't all the way in yet (and it started in May)! Hopefully these won't take as long to come all the way in. I think its going to be pretty cute.

Different Kind of Holiday

We're home now, we were discharged Wednesday afternoon. The surgery went well, but this time Dr. Yaun was a little less positive when we left than any other time, which is pretty unsettling. I can tell that she really doesn't know if it will work this time. She was able to go in and break up the membranes with the endoscope successfully, but that is no guarantee that the membranes won't still cause issues or grow back. What she did with the endoscope was actually the less invasive of the two methods. If this doesn't work and the membranes remain an issue, she will have to result to cutting a 2" diameter opening in the top of his skull, removing the bone, and going in to cut the membranes completely out of the ventricle. They replace the skull piece with screws and it will grow back together. Makes me nauseous just thinking about it.

When they do a shunt revision, they always do a CT at 4 am to check the placement and check for any issues. In the past the results have always come back with "thumbs up", but this time when she came in at 6 am to talk to us, she said she wasn't comfortable with what she saw. The catheter had moved from where she placed it in the middle and deep into the ventricle (directly into the pressured cyst that was causing trouble), and it had been pushed to the side against the wall of the ventricle. Of course, she doesn't want to operate again just to replace it until we confirm that it is failing. She said she's seen other kids have catheters in non-ideal places that have worked just fine, but nonetheless, it is in a bad spot and the odds are against us that it will drain properly.

So we're on high alert over the weekend. She initially wanted to keep us another day, which would have had us in the hospital on Thanksgiving, but she said she felt that we had a very good eye for the symptoms and felt comfortable letting us go home, with orders that we'd immediately return if he started getting sick. I'm so happy we aren't there today, I am SO over that hospital! We were supposed to travel to Alabama with all the kids for the holiday weekend. It was a tough call, but I insisted that Bran go on to AL with the kids and I would stay back with Lucas and hope for an uneventful weekend. Bran's family already sees so little of his kids, only about 1-2x a year. The kids have been talking about going for weeks, I just couldn't see disappointing them for this much anticipated trip to see all their aunts, uncles, cousins and grandmother. Not to mention, this is the first time in a few years that all of the Stishers were going to make it in for Thanksgiving.

Nothing right now is a clear-cut symptom, we just have to wait it out. Lucas' eye is still dropping, but that could be from the change/reduction of pressure, or air pockets that get in there from the movement of the endoscope. The air pockets are expected to dissipate in a few days. Last night Lucas threw up his dinner, which has me REALLY worried, but so far today he's kept everything down and his eye looks better today than yesterday. Remember the symptoms are... sunsetting eyes, throwing up, irritability, crying, and excessive sleep. Dr. Yaun said another reason she feels comfortable letting us return home is that Lucas typically shows the same pattern, giving us a few days warning on symptoms before he really bottoms out. She said some kids will start showing symptoms and go down very quickly, from seeming fine, to throwing up, to crying uncontrollably, to not being able to wake them up... all in a matter of 2-3 hours. That's pretty scary. I guess I'm glad we get a more subtle creep on going down that path.

Not exactly the Thanksgiving we had in mind, but if we stay out of the hospital this weekend I'll be ecstatic! That's all I care about right now. I'm grateful to my friends who have extended invitations to Lucas and I to let us crash their family dinners! Even though I've had a number of "its not fair" meltdowns the last couple days, I do have a lot to be thankful for this year... his incredible smile, for one! Happy Thanksgiving to everyone! Go hug your little ones.

PS, check out the songs I added to the sidebar last night, a few that are special to me for Lucas. I've been wanting to get these on here for a long time. The first one will melt your heart, "He's My Son"... I still can't listen to it without crying. Its so fitting to the year we've had. There are a few more I'm trying to add, but I haven't figured out how to get them all into one player.

Surgery Again

I'm sad to report that we are back at Children's today for surgery this afternoon. I've been suspicious for more than a week that something didn't look right with his eye, and every day it got a little bit worse. I just had this feeling that I couldn't shake all week that something wasn't right, I kept telling Bran that although he seemed happy most of the time, he just wasn't himself. Yesterday he started showing more symptoms of malfunction and Bran took him to the ER first thing this morning. I had a meeting I couldn't change today, so unfortunately, had to miss being there. Dr. Yaun is now going to "Plan B" that I talked about in the last surgery... the new catheter appears to be working, but there is, in fact, walled off areas in the ventricle created from scar tissue (from his bout with meningitis). She is going to go in through the top of his head again with an endoscope and try to break up the tissue so the ventricles can talk to each other again. This just has to work this time.

On a positive note, his new therapy this weekend was awesome. We are so excited and are already seeing some subtle changes in him. Everything that she is doing and this whole method just makes sense. I feel like I hang on her every word when she explains things to us, because it is all so interesting. I read in mother's testimonial for the Anat Baniel method that she gave birth to her son, but Anat gave him life. That's kind of how we feel... we are putting a lot of faith and trust in her to help him, and there's something about her that I know is going to work. She also is so positive, and said he is going to do so much, we just have to teach him another way. Its a far cry from the OT we had to fire a few weeks ago who was already talking about immobility, leg braces, and Botox shots in his legs to help with his high tone. Carla (the new Anat Baniel theraist) is so far from that and said she sees so much potential in him. And she's the first person to give him some slack for all that he's been through and not stressing how much he is not doing. She said it is just un-tapped and his brain needs help wiring. Now our challenge is we have to take a few steps back to try to "un-do" the bad habits he's gotten into the last year with improper therapy that are actually inhibiting his ability to move forward. I have SO much more to talk about with this, but no time to explain now. Lucas just went into surgery a few minutes ago and I stopped at home on my way back from my meeting to grab a few things and thought I'd let everyone know what was happening. Have to run so I can be there when he wakes up.

I don't know if they help sometimes, but your prayers are certainly still welcomed and needed.

Bragging Time

We've had a great week, Lucas is feeling good and all smiles! So far, it appears the shunt is working. I thought I'd dedicate this update to bragging about all the cool new things he's doing now. He's showing more and more receptive language every day. I tried to count the words he knows, and I'm up to about 35 that he comprehends (and that doesn't include all the Spanish words he's learned from Mirna that I don't know)! He definitely recognizes the kids' names, and the kittycat--evident in the way he lights up when he hears the words. He signs "more" and "all done". He gives kisses, raspberries, waves bye-bye, and we're working on hugs (he can't quite get his arms into it yet, but he knows the word and leans his head in for the hug...so cute). He can help take his arms out of his shirt, and removes his socks when he's told. He's mimicking a lot, and this week he's stuck on the word "mama", saying it constantly. :-) Pretty good for a kid they said wouldn't have normal function and ever make it this far, huh?

We're working very hard on motor skills. For the first time this week, he held himself in all fours for about 2-3 minutes all by himself!! Yeah! Bran and I were so excited, I was yelling "grab the camera...grab the camera!" This is a very big step, it has been predicted by some that he'd never be mobile. He may still be a long way from crawling, but the fact that he's weight bearing on both arms (with the left arm not being very functional) is a very big deal! Our PT was very surprised and happy with his progress yesterday, she said his hips are finally loosening up and his torso is getting stronger. The high tone (tightness) in his hips and hamstrings are a major inhibitor to him being able to sit independently (although he's getting close), and especially for standing/walking. Right now he won't stand at all because the minute his feet hit the floor, the hamstrings involuntarily fire into a tightened position, making it impossible for him to stand. The only way to loosen tone in the legs, is to stand. But when your body won't let you do it, it makes this a very hard thing to overcome. We have to somehow break the pattern. Just like the only way to reduce the tight tone in his left arm is for him to use, and weight bear on the left arm (another reason it is very exciting that he stayed in that position for a couple minutes) .

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We are starting a new therapy next week that I couldn't be more excited about, called Anat Baniel. I found it through another preemie mom who's son had a Grade IV bleed, and has seen some incredible results. The Anat Baniel method is predominantly practiced on the west coast (with its headquarters in California), but there are a handful of practitioners in the DC area. I had appointments set up for him last week, but the therapist got sick, so we're rescheduled for next week. It is specifically practiced in children with brain injuries or CP, and has a unique movement approach to "teach" the brain to make new neural connections. Lucas not only has high muscle tone making movement challenging for him, but due to his injury, his brain cannot learn movement and achieve milestones the way a healthy child would. This therapy focuses on helping the brain develop the patterns in the order that it should be learning, rather than just focusing deficits in the various muscle groups. There is so much more to explain this specialized therapy, but I'll do that later after we've had his first few sessions. We will do a burst of 3-4 appointments within a period of few days, then take a break...then back for more if we see results. Our regular PT that treats him every week is also on board with us trying this method, so hopefully it will be a nice complement to her treatments. I feel good about this, there's just something in me that says this is going to really help him.

His eating skills have also improved this week, he is finally able to tolerate the texture of the little stars and eat an entire one. Like most preemies, he has some sensory issues and low oral skills. He's been receiving therapy for feeding too. We've been working on this for about three months, he would gag or try not to swallow. We started very small with 1/4, then 1/2, now he's eating them whole and starting to chew like an old pro. I told our therapist, he just needed to finally get a week of feeling good, and see what he's accomplished!

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I'm overdue for posting videos, here's a link to six recent ones... http://www.vimeo.com/album/24111

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I have to set the one below up with a story... As I said in a previous update, I taught Lucas to do raspberries on command, which was very cute as a new "trick" for a couple of weeks. The kids came Halloween weekend and loved getting him to do it... so three kids requesting constant raspberries for an entire day equals a little boy that thinks this is a really fun way to get attention! The following day, he was doing them constantly. We were at a party and as we'd be talking to people, he'd be spitting. Not so cute. So in an effort to "un-teach" the raspberry, the rule was that no one ask him to do it, and not to laugh at him when he did (the first thing he does is to look to see if you're laughing). Tough not to laugh though, its still pretty funny. So in the video called "Giggle Box", I tell Abby to let him give one for the camera. You can see what he does from there. Warning...you'll hear A LOT of coughing in these, for some reason this sound just cracks him up, and happens to be on several of these to get him to laugh.

"Giggles and Raspberries" Video:

All by myself!!

The Boys

Two Little Miracles - Lucas and Elle

(At the Halloween party - my friend Courtney and her daughter Elle,

also born at 25 weeks weighing 1 lb, 6 oz)

Working with Daddy

Cautiously Optimistic

Writing a quick note... so far-so good! Lucas had a pretty good week, all things considered. We were able to wean him off medication the past couple days and the crying has diminished. I will say that this time around has been a lot better for him for some reason. Go figure... this was the one that was the worst going in and the most invasive (post-NICU) and he seems to have bounced back more quickly. The only thing that was the same, was his crying at night... I don't think it is pain, I think he gets scared. It happened the last two surgeries, he just gets really needy for about a week and if he wakes up at all after laying him in his crib he will cry. He doesn't like to be left alone. The first couple nights, he woke up several times through the night. He's become quite needy for Mommy, which I would expect. Last night we were cry-free and the first night that he didn't wake up!

I wish I could say everything is great and that this will be the last time, but we remain very on edge. I don't think we will rest until we know after many weeks that it is working. We are supposed to go in three weeks for a follow-up CT scan. Every time his eye drops a little, I'm worried it is the pressure again. I just can't shake the feeling that this one is going to fail too. His eye still drops sometimes, and I don't know if it is a sign of pressure building like before, or if it is just the shunt needing more time to get rid of all the extra fluid and equalize the pressure. He needs this to be the last time! He needs it for his weight gain, and his overall motor skill development. We've taken steps backwards in both these areas from this last two months being sick.

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Since he was feeling pretty good by the end of the week, we were able to get Lucas out trick-or-treating on Friday! The kids were all very excited to see him dressed up and go with him for the first time. Abby wanted to be a Momma Bear when she learned of Lucas' costume. So cute. Unfortunately, it was a very short event because the kids didn't get to our house til after 8 pm, and once we got everybody dressed, trick or treat was basically over and there weren't any other kids out. Luckily a some porch lights were still on and they got to hit some houses. Lucas also goes to bed by seven, so he wasnt in the most festive mood as we were wheeling him around the neighborhood that late dressed in a bulky costume! Bran always gets the kids at 6 on Fridays, but the kids' mother withheld them without Bran's agreement so that she could take them trick or treating, even though she knew the kids had plans with their Dad & Lucas. He was there to pick them up at 6 pm, but she left with them, and wouldn't answer or return any calls. He had to wait over an hour for them to return. Ugh, it never ends. As if we don't have enough chaos, and it only hurts the kids. They said many times how they hated that the night was so short.

Anyway, we made the best of it. Here's some costume pictures!

Little Grizzly

Paws

The whole clan

Momma Bear & Baby Bear

Kisses from Mama Bear

Gran & GranDan came to see the kids off

Room With a View

Well, here we are again in our room in the new posh wing of Children's with the view of DC and the Capitol Building. We are always reminded from nurses when we arrive in a room on this side what a beautiful view we have from our window. It is beautiful, but honestly, who notices the view when you are on the neurology floor for something like this? Ugh. But as I write this at 1 pm, we are sitting here waiting for discharge, so that is a good thing!

We arrived in the ER mid-morning yesterday and by noon they had determined it to be a shunt malfunction and three of the four ventricles were enlarged. It makes sense that it was pretty severe pressure because Lucas went downhill in a hurry yesterday. He threw up several times in the morning and by the afternoon was barely moving and crying a lot. I can't describe how hard it was to see him like this. We have heard so many times from the neurosurgery how sick kids can get, but we've never witnessed it this bad until yesterday. I found it very ironic how we were so against surgery and upset about it, but by the time the afternoon rolled around, we were practically begging them to take him to surgery right away. They initially suggested waiting until Tuesday morning so they could make sure they ruled out infection of the spinal fluid, but we asked that they not prolong it because he was in so much pain. The first gram stain of the fluid came back normal, so Dr. Yaun agreed that she could go forward with the surgery. The second day (today) came back clear too... they do three days of cultures.

I have to tell this quick story because we've been so touched by humanity along this journey the last year and a half. After a few hours of being in the ER and watching Lucas decline, crying out every time he was laid on his back (getting xrays were brutal)... it was time to put in the IV (and since his veins are shot from the NICU, this is never fun). I had to leave the room again for Bran to tend to him for this. It seemed to take an eternity, while I listened to him cry outside the room. Then I had to leave the area completely as I just lost it, it all hit me at once... watching my little baby in pain and the reality that we were there again ready to go in for another brain surgery. Why does he have to suffer so much? I started just sobbing in the hallway. The next thing I know, a janitor walks up to me and lays a box of kleenex's on my lap. He doesn't say anything at first, just quietly gives them to me and goes back to clean the floors. Then a minute later he comes back up to me while continuting to mop the floors and says "it is all going to be ok, I just know it," then asks me if it is my son or daughter back there. He keeps telling me it will be ok, that they do wonderful things here. It is probably not the first time he's watched a parent break down outside the ER, but it was so sweet and his kindness is something I will never forget it.

They got him into OR pretty quickly, was in around 2:45 and out at about 5 pm. Most likely, the catheter they put in two weeks ago was clogged by a collapsed cyst, as it wasn't working at all. Since he has scarring and pockets of fluid walled off in the ventricle from meningitis (which we knew about), there was a risk that the cyst could drain, and collapse around the catheter. This caused a back up in three of the ventricles. The fourth (the one with its own catheter on the left that was inserted in March) was still ok.

Ok, this next part is going to be complicated to explain... instead of just putting in another catheter in place of the malfunctioning one, she decided to run a whole new cathether on the outside of his skull (under the skin, between the skin and the skull), then drop the catheter into the right front where all the trouble is, where the original injury occured. If you remember from previous posts, the reason she talked of putting in second shunt system on the right was because it is dangerous to run a cathether from the back left where the valve is, all the way up to the right front, crossing midline. It could damage healthy brain tissue and carries the risk of bleeding. So, she decided to run it on the outside, then back down into the brain. He has two incisions this time, one the back of his head (made larger this time), and one on the top/front of his head (once healed it they will both be covered by hair). So he has a small tube running under the skin from the back, up and over to the front region. Unfortunately this required a hole in his skull in the front to insert the catheter back into the ventricle, but the bone will safely grow around it and will not pinch the tubing. Who knew. Lets hope this works and that it is the last time (at least for a few years)! She said she feels better this time, and since the three ventricles all balooned when the catheter stopped working, it is and indicator that the three are communicating with each other, which is what we want. If this is true, then there may not be a need to go to Plan B, to clear out the scarring.

The good news is he is doing really well today. He woke up from the surgery in pretty good spirits yesterday (not near as much crying as the last two times). He even gave Gran a raspberry when he was first coming around (just one of the bad things I've been teaching him lately... he now sticks out his tongue and blows raspberries on command). And the sweetest thing happened while he was in recovery... here he was 2 hours post-op, and he held his bottle and self-fed for the first time ever! I think he just needed a small bottle that he could grasp with one hand to show us this new skill (since he doesn't like to use his left hand to help, he would never hold his bottle at home with two hands). He just keeps on surprising us! See the picture below.

He had quite a bit of crying overnight and not a lot of sleep, but we're off to a good start this morning. Dr. Yaun said his CT looked good this morning and we're getting ready to go home in the next couple of hours. Please pray for a quick recovery and for it to be the last, and above all, no infection from the surgery. That is always the biggest risk. As always, thank you to all our good friends and family for your support the last couple days. We love you.

PS, we LOVE Dr. Yaun. She is truly an angel. We feel lucky to have her.

Holding his bottle for the first time...

On Our Way

On our way to the ER, Lucas was pretty bad this morning, will update later today...

Update

I had planned on updating the site this weekend by saying "all good"... but now I'm not so sure. We had a pretty good week of recovery, some crying the first few days home, but every day it got better and he's been very happy. Now this weekend, there's definitely something wrong. He's throwing up again (last night and this morning), is lethargic, sleeping more than usual, and his eye is dropping a lot again. The old question remains... is it just a virus or is it the shunt? Of course, we're always suspicious of the shunt and pressure, if it weren't for his eye dropping, we wouldn't be as bothered. And, with Dr. Yaun saying we would "try" this revision first before going to Plan B to clear out the scarring, we're very on edge. We even contemplated going to the ER tonight when he was very limp all evening and started crying for no reason, but he's sleeping peacefully now and we decided to wait until morning before deciding what to do.

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On a good note, we saw the pediatrician this week, and all is clear with the ear infection. He said he was very pleased with how he looked and his lungs sound clear again. At least we can put that one behind us.

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There are a lot of changes going on with his therapies, but I don't have a lot of time to write much detail. Here's a quick summary... after increasing his therapies from the county to once a week for each (OT, PT, VT), we are now looking into private therapy multiple times a week to increase his motor skill focus. It is going to cost us quite a bit, but we must try some new things. He has fallen very behind and it is becoming a lot more clear lately (as he is not yet sitting up, not even close to crawling, etc.) We have a lot of things we can point to for being behind... surgeries, illnesses, introduction of siezure meds, vision impairment, and limited use of his left arm... all of these compound to create some major setbacks, there is no doubt about that. But, increasing therapies should help, so we are currently looking into a number of options.

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We also requested a new OT from the Early Intervention program, after deciding that she is not the best fit for us. She has been very negative lately, and when you're dealing with all that we are faced with, we need the most optimistic and positive people around us. Our PT and VT are awesome, but the OT is missing some things that we feel are important for his success, and quite frankly, my sanity in dealing with her once a week! I spoke with the Executive Director last week and we should be introduced to a new one this week. I am told she will be from the team that has more neurological experience and deals with more medically complicated children.

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Lastly, I am so excited about an appointment I arranged for him last week (for Feb 09). Dr. Christine Roman is a well-known expert on CVI (cortical vision impairment). She is an educator, author, and lecturer, and is Director and Assistant Professor of the Program in Visual Impairment at Marshall University. Our vision therapist studies her, and often references her theories, writings, etc. From day one of meeting Beverly (our VT), all I've heard about is Dr. Roman. I just learned that she is in Philadelphia (3 hours away), and that she still sees children. I got to speak to Dr. Roman last week, and she is going to see Lucas!! I am part of a network of other parents with kids with CVI, and have heard nothing but great things about her and how much she's helped them. Some families have driven from several states away just to see her. We can't wait! http://www.wpahs.org/news/releases/index.cfm?mode=view&article=74

I had to end this update on a good note, as I hate to just report bad news. But, we are worried and absolutely sick about the thought of taking Lucas back into Children's for another surgery. We'll see what the next day brings, and I'll try to do better at getting an update up more timely.

Here's a few pics from last weekend, we didn't get quite as many smiles this weekend. :-(

Cutie in his new Rocky & Bullwinkle PJ's

Such a big kid now!

Sitting with Mommy
What are YOU looking at?Lucas could care less that he was next to a miniature pony,

but Mom thought it was cute!

Its Over!

For those that don't know, we ended up in surgery somewhat urgently this week to correct the shunt. Lucas started throwing up on Sunday, and it occured again on Monday and Tuesday morning. This is one of the symptoms to look for with a shunt malfunction... first the sunsetting eyes, then change in appetite, crying from head pain, lethargy, excessive sleep, and throwing up. We've been on alert for these things the last few weeks wondering if we'd make it to November 5. He was tough to diagnose because even though he was sick these days, he would only do it in the morning, then better throughout the day. We didn't know if it was something else, especially since he was just getting over being sick. By Tuesday I knew something was up, as he was more lethargic and crying hard for no obvious reason, which is just not him. He also wasn't interested in eating. I called his neurosurgeon Tuesday morning and asked her if this "morning sickness" could be correlated, and she said yes, that sometimes kids will feel the effect of the pressure more in the morning, then appear fine the rest of the day (which was totally him). She told me to bring him into the ER to get a CT scan, and that she would tentatively be holding a spot for him late afternoon for surgery.

The CT confirmed the pressure had gotten worse from the scan three weeks ago on the right and that the pressure was now crossing midline and pushing/condensing the left side of the brain. This new picture made her suspicious of a block in the tubing, rather than scar tissue being the culprit (as she thought was the reason a few weeks ago). She felt that the catheter had moved too far to the side of the ventricle, which could make it less effective. The other difference in this scan, was now that the fluid area was larger and crossed over to the left side, it would actually make it easier for her now to extend a new catheter from the shunt valve on the left side of his head. This must sound so confusing... but remember, the shunt valve is physically located on the back left side of his head, and a few weeks ago she said if she had to take the catheter from left all the way over to the right front, she felt it carried too much risk of a brain bleed. *There's an explanation and picture of a shunt in a previous posting called "hydrocephalus" if this makes no sense.

So... we ended up in surgery Tuesday evening around 11 pm. She was able to pull out the old catheter, and feed the new tubing through the existing path (so there was no need to create another hole in the brain matter). She put this new tubing deeper into the ventricle and more in the center of the ventricle, which should be in a better position for draining. She confirmed that when she pulled the old one out, there were only a few drops of fluid and that it was not working. Dr. Yaun told me before surgery that her one worry before operating, was that when tubing has been in for awhile, it can sometimes be scarred over and you run the risk of tearing tissue and bleeding when its pulled out. Luckily, it was not attached at all and she said it pulled out immediately.

As scary as all this was, at least its over!!! I think I was more scared of this surgery than any of the others. As I've said before, sometimes it is harder to be in limbo and worry about all the outcomes, than to just barrel through it. That's just what we did on Tuesday. It was such a relief to see her come around the corner and tell me that it was over, that he was ok, and that it all went well. She said she feels really good about the way this was repaired. There is still a chance that there is scar tissue in the ventricle from meningitis that will keep the shunt from being effective and may require another surgery to correct, but we will try this first. If there is scar tissue, we have another option (Plan B) before putting in a second shunt, which is to go in through the top of his head and try to break up the scar tissue. We would try that before putting in a second shunt system (which would be Plan C). We are SO relieved we didn't have to put in a second shunt!! Actually, a relief that we didn't have to do either "B" or "C". We got out of this with the least invasive of the three options.

I should say that he was pretty darn happy even through all of the pressure... I heard it more this week than ever from the constant stream of people at the hospital, "awh, he's just so cute!" (as he smiled constantly at nurses and doctors on Tuesday when we waited all those hours for surgery). When Dr. Yaun came in to show us his CT scan and tell us she wanted to operate right away, he just sat there and giggled at her, and shook his head "no" every time she'd ask him a question. She was cracking up. I need to get it on video so you can see... he now shakes his head "no" at everyone he sees and gives a grin, because he wants to get a reaction. It is a beautiful thing to watch him do things to "see" a reaction on people's faces.

Not that this was a walk in the park by any stretch, there was a lot of crying that was just heart breaking. There's nothing worse than seeing his face and hearing his cry when he wakes up from surgery. Since he's not a cryer, hearing him scream out from pain or from being scared hurts me to the core. Yesterday he would startle really easily from the slightest loud noise, then start crying. It got to the point last night, that I couldn't lay him down for even a few minutes or he would really start screaming. Dr. Yaun said if they've been living and adapting to the pressure for a long time, just the act of removing the pressure and the sudden shift can cause pain. Other than for naps, he wanted to sit in my lap for most of the day. I guess that's to be expected, all kids just want their mommies when they are feeling bad, don't they?

I want to thank Danny (Bran's Dad) for being there for me and Lucas through the surgery. This all happened while Bran was stuck in California on business and he couldn't make it back in time for the surgery (very bad timing for a shunt failure). And Saundra was away on business too. But Danny was there all night by our side, waiting all those hours, walking us to the OR, and was still there when we could finally see him in recovery at 1 am. Danny said it was the first time he's ever heard him cry and so sad to hear (... I told you he never cries)! GranDan and Lucas have something special, Lucas really lights up when he sees him (and so does GranDan). I was glad he was there. My friend Courtney was also there for me Tuesday night. She has an amazing little 25 weeker too, about to turn a year old. She says our little ones are "going to have each other's back one day." :-) Unfortunately, she knows Children's Hospital about as well as I do, and we share some of the same doctors. I was so touched that the minute I told her we were heading to the ER, and probably the OR... her next message was, "What floor are you on, I'll be there." It was nice to get my mind off of things, as we waited about six hours for an operating room. I know our families would have been right there too, if they weren't out of state.

What a difference a day makes though... I'm happy to report he's getting back to himself today (Thursday). We were discharged around noon today and he's been chatty, smiling, and starting to eat again. Relieving the pressure that he's been living with for several weeks (or months) should be great for him after we get through a few days of recovery. I can already see a difference in his eye, and I can't wait to see if this makes his vision improve on that side.

Sorry for the long post, a lot has happened. I'll update everyone in a few days just to let you know how its going.

Just before discharge, feeling much better...

Much Better!

Our little punkin!

We're finally on the upswing from the nasty cold and lung scare. He finally stopped wheezing a couple days ago and the pulmonologist saw Lucas this morning and said she was very happy with the way his lungs sounded for as bad as they were last week. She said she has already admitted 15 patients into the hospital in the last two weeks for RSV, which season doesn't officially start until the end of October. Wow. The first thing she asked me this morning was whether the pediatrician swabbed Lucas for RSV last week when he was coughing and wheezing so much, and when I said "no," she looked surprised (which got me worried that the appointment wasn't going to end well. But when she listened to him, she said she felt that RSV and Pnemonia could be ruled out for now. Very good news!!

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And guess what... we get to call the home health company and tell them to come pick up the dreaded apnea monitor. Yeah!! She also wants to repeat his sleep study after we figure out when/if he will have surgery, and wants to do it three weeks after he has surgery, when he's fully recovered. She said there is a chance that with time, he may have outgrown the need for oxygen for his apnea and wants to check to see if he absolutely needs it. We know he will still need his tonsils out in the spring, but can he live without the extra oxygen until then? That will be sooooo nice. Also, since he's getting older and so much more squirmy in his crib, they feel it is a safety concern, as well. Since he takes his oxygen off every morning, they don't want the risk of him getting tangled in it if it isn't absolutely necessary. That has worried us a lot, as he sometimes has it wrapped around his shoulder a couple times. I wish we could do the sleep study tomorrow and figure this one out, but with all the pressure building in his head right now, it would be useless to do it now. So we'll wait with that too, I guess.

We're hanging in there with the pressure for now, I can tell his eye is really dropping. You can't tell from these pictures because I just picked the ones where his eye is up. I just don't know if we'll make it to November. He doesn't seem to be in too much discomfort yet, but that could change at any time. I'll keep everyone posted.

Here's some pictures from this past weekend...

A beautiful day and a snuggle

The kids at the pumpkin patch

With Dad on the hay ride

What's so funny?

There's a great story behind this elephant. Nicholas bought this for him last summer while Lucas was in the NICU, with his own money. Nicholas was riding his bike and stopped by a neighbor's yard sale, he ran home and asked Dad if he could take money out of his bank to get something for Lucas. Bran didn't know what it was, but said sure, if you want to. So, Nicholas took $2 from his bank and carried this elephant home for Lucas, one of his first toys. So incredibly sweet, it brings tears just thinking about that day. For the past year, Nicholas has been very protective of it, if the girls ever try to play with it, he tells them, "get off, that it is Lucas' toy." We tried Lucas out on it for the first time this weekend!

Check me out, I can't quite sit up on my own yet, but I'll get there!

Mommy making me laugh

Status

I apologize that it is Wednesday and our appointment was on Monday, I know everyone has been worried. In between running to doctor's appointments and taking care of Lucas, I'm trying to keep up with a sometimes demanding job. Clients don't stop asking for things, and meetings still need prepped for, even though things are busy at home! This week has been especially challenging to find free time with him sick and appointments... as soon as I put him to bed, I spend the next few hours working to catch up before getting to bed, exhausted!

I don't know much after Monday's appointment, unfortunately. The ophthamologist confirmed pressure (as we already knew), but said she couldn't really see whether it was so much that an urgent surgery was necessary. She felt a little at a loss because it had been so many months since seeing her (my fault), and couldn't really compare today's exam with past exams, except from January. She was kind of put off that the neurologist didn't call her or anyone from her department to do a bedside exam of him while he was in the hospital in March, when his one eye became dilated. She was very concerned about the dilation. Oh well, that's in the past now! She wants to see him back in 4 weeks (one week before the MRI) to see what has changed. So we'll wait... until 11/5, unless he goes downhill between now and then. That's tough to do, when you know there are negative things happening inside his head. And since he obviously has a HIGH tolerance for pain, he doesn't tell us when he's uncomfortable until it becomes unbearable. I read a website the other day of a girl with hydrocephalus, now in high school... and to hear how she describes the pain when a shunt malfunctions and pressure builds is very distressing. I can't stand thinking of him in pain. I am convinced that his eye is dropping more lately, so maybe we won't make it until November. Its hard when you see him every day to notice subtle changes like this. I asked Mirna (our nanny) what she thought, and she agreed that it was pushing downward much more recently.

So... how about some positive news? She said she thinks he can see out of the right eye, and just the right visual field may be missing. Its tough to say when they're this little, but promising to know he may have "some" vision in that eye. After all, we're just shooting for functional right now -- not stellar. It was also nice to hear her say good things about his overall response, she said he made eye contact and smiled (and there was absolutely no visual response in her records from January). She also said that although she agrees that pressure is making his eye move in the wrong direction, that it may also be muscular... and that can be corrected. The interesting thing is, she thinks the left eye is the one with the problem (the one we thought was normal). She said it is not moving over far enough, and it makes the right eye "appear" to be the one that is facing outward. This is another hard thing to explain without a pen and paper, or my hands.

Monday was an eventful day not because of the eye doctor, we ended up back in the pediatrician's office. Lucas started coughing through the night Sunday and non-stop Monday morning, and wheezing so bad I could hear him struggling to get a breath from the back seat of my car on the way home from the eye doctor. His chest was contracting in, like it was in the NICU when his lungs were very stressed. The pediatrician wanted him in right away, and it turns out the antibiotics are not working on the ear infection (which has gotten much worse in his ears, he said). Now it has spread to his lungs, and with a baby with scarred lung tissue and chronic lung disease (known as BPD), this is very serious, as distress to a baby with BPD can impact other systems (heart and kidneys), as well as develop into a more serious illness. He gave us a stronger antibiotic and we started doing nebulizer treatments every hour on Monday afternoon, and now back to every four hours for the next few days. That seemed to help, but he'd start wheezing again about 10 minutes after the treatment. We are supposed to watch him very closely the next couple of days, and if the wheezing doesn't stop or worsens, we need to go back in for further evaluation. So far it seems to have stayed the same, but at least not worsened. They worry a lot about RSV and pnemonia, so please keep this little guy in your prayers, once again. I just read about another child in my preemie group who just spent the last three days in the hospital from pnemonia... that started from a common cold! Ugh. And its not even cold and flu season yet! I also heard the pulmonary nurse said she's surprised at how many cases she's already seen of RSV in DC (and vaccinations do not start until October, when the season usually starts). I'm reminded again this week of the insensitive comment said to Bran a couple months ago of "when are you going to think of anyone but yourself and Lucas?" when trying to keep the kids separated from one with a fever and illness. This is exactly why!

We're just holding for now and will see what transpires. Thank you to everyone that sent emails or called us this week, after learning the news of his pending surgery... we know he's in a lot of people's hearts. It really means a lot.

PS, he's still all smiles through all of this. My little hero.

Results of CT

I wanted to let everyone know about the CT scan on Wednesday. We didn't get good news, the ventricle on the right side has gotten larger from the CT scan in July, and significantly larger since his surgery in March. By "larger," I mean it is not draining, and the fluid is building up within the ventricle and compressing the brain tissue. On a good note, the left side (that was corrected in the March surgery) is completely reduced and appears normal. Yes... the word, "normal" we finally got to hear for that side of the brain!

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This means almost certainly another surgery, but they want to do more investigation on the reason before they go in making changes. When we initially suspected an issue on the right side not draining properly, our first thought was a malfunction which would mean replacing the catheter that runs from the valve into the ventricle. But, she believes the shunt IS working properly, but that the two right ventricles have walled off from each other, so the shunt is essentially only working for one of them. To try and explain again what the shunt is supposed to do... there are four ventricles and they are all supposed to communicate with each other. You should only need one "outlet" for the fluid, so by dropping one catheter into any ventricle, it should drain all four. In March of this year, we learned that one of the left ventricles had walled/scarred itself off (most likely due to meningitis), eliminating the left from communicating with the other ventricles, so it was necessary to drop a 2nd catheter into the left ventricle and that was spliced into his existing valve.

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Now they believe this scarring has happened between the right ventricles. The initial suggestion is to put in an entirely new, second shunt on the right side of his head. They feel it is not a good idea to splice the existing one 3rd time because it would make the shunt too complicated. Also, since his shunt valve is physically located on the left side of the head, she feels it carries too much risk to push another catheter through the brain from the left to the right, crossing midline. (Remember, the ventricles are all on the inside of the brain.) Doing this, carries a risk of brain hemorrhaging, and we just can't risk that.

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Its been a tough pill to swallow the past few days. And I can't get the image out of my head of him crying when he woke up from surgery the last time, and the days that followed. For a kid that never cries, it just breaks your heart to see him crying from pain. This is obviously not what what we want, as a whole new shunt means a more invasive surgery, double the risk of an infection or malfunction, a more complicated thing to figure out if it should malfunction (to figure out which piece is causing it). And, it is bothersome to think about the interference for him with two foreign objects in the back of his head. Today, he is comfortable rolling his head over the shunt on that side, but I hate the thought of him having one on both sides when he lays his head down. And when I say an entire shunt installation is more invasive than a revision, I mean that not only will they have to drill another hole in his skull on the right side and push the catheter through healthy brain tissue to get to the center, they have to make an incision into his belly and insert a second set of coiled-up tubing (so it will stretch as he grows), and literally have to fish it up under his skin from his abdomen, over the ribs, through the side of the neck, and attach it to the valve. (If any of this is confusing, see the explanation and pictures on "hydrocephalus" that was posted back in July.) It is also hard to imagine that he would have two sets of this tubing in his belly on each side for the rest of his life. Just seems wrong. Its hard to believe that after Tuesday, I'm actually "wishing" for a malfunction as the culprit, which would just be replacement of the original catheter, and the lesser of two evils.

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We have two next steps... he is scheduled for an MRI on November 5 to take a closer look and determine the exact cause and they will decide then what approach to take. Also, we have an ophthalmologist appointment tomorrow and our neurosurgeon wants her to determine whether the pressure building is starting to impact his vision on the right side or feels that it will cause more damage to the nerves by waiting a month for the MRI. Apparently the ophthalmologist can see this pressure and its direct impact on the eye. Call it mother's intuition, but I have a good feeling it is (just as I had a feeling on Tuesday walking into the doctor's office that the CT scan was going to confirm the buildup on the right). I have noticed his right eye floating off on its own and pushing downward a lot more lately (you can't see it in the pictures I post, because I usually do not post those). However, it could also very likely be a muscle weakness or blindness in that eye. Both of those would create a similar result. But I just feel it has gotten worse over the last couple months, which would point to pressure.

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So, tomorrow will most likely determine his fate -- of surgery sooner, or later. I've don't know what to hope for, because I just feel like the writing is on the wall. It is SO hard to find the balance between being positive, and being in denial.

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Totally unrelated... his cold is still lingering with an added cough, and turned into an ear infection, he spiked a fever last Monday night and Tuesday. It was good timing that we had a well-visit already scheduled with his pediatrician on Tuesday and nipped this one right away. Sounds funny, but I was so happy and relieved to hear it was "just" an ear infection! Its about time that he have something typical with some quick antibiotics to cure! I'll end on a good note... in spite of all of the neuro stuff, the pediatrician thought he was doing remarkably well and kept going on and on about how pleased he was. He is happy with his weight gain (go figure, as this is a constant battle to get calories in him!), he is below the curve and on his own track...but following the exact same shape of the curve as he should be. The pediatrician said this is all that matters. He said he is just so pleased with his disposition, his cognitive learning of late, his visual improvement, and his overall development. Even though Lucas was in pain from the infection and definitely not himself this week... he never cried, and was still always smiling! I don't know how he does it.

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Of course, I left the pediatrician on Tuesday feeling great, but pretty sad on Wednesday after the neuro appointment. But, we're entering another week and we'll see what the eye doctor says before getting too far ahead of ourselves. We'll just press on, as we always have, and do what we need to do for him.

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I don't like to post without some cute pictures, so here's a few from the past few weeks that make me smile...

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Getting Mommy

He loves being tossed in the air, its always a sure way to get him to belly laugh

Grandma came for a visit and brought a cake for Mommy's birthday! Abby hugging on Lucas
Big smile