Three Good Appointments!

I just posted two more albums - from our March of Dimes walk and the month of May. I'm still a month behind, I hope I can get June pictures up soon and some videos--I just pulled a bunch from our camera and there are definitely some cute ones! I wish it didn't take so long to edit and format them for the web. We've had a very good month, with three excellent doctor's appointments!

First we saw our Neurosurgeon for the shunt surgery follow up. I always love seeing her and she was very excited to see Lucas looking so healthy. Every time she'd stand him on her lap to examine him, he'd start jumping and smiling... this is his newest thing. He no longer will stand for us longer than a second -- its instant jumping! :-) She said she couldn't be more pleased with his progress. We did not do a CT scan that day to check for any more brain expansion, we will do one in September (we have to spread them out due to the risk of receiving too much radiation). That day we decided to go up to see our old friends in the NICU. We got to see his nurse, Jackie, and several others.

We saw the Neurologist next (Dr. Chang). She was Ms. Negative last year and the one I dreaded seeing in our family meetings. She hasn't seen him since all the seizure meds and the aftermath of the surgery in March... she was also very excited with his whole demeanor. The first thing she noticed was his vision and how much she could tell it had improved, as he looked up when she walked in the room (remember, he was seeing nothing after the surgery). She kept saying over and over, "I wouldn't have predicted this! He looks SO good and look at all the things he is doing!" She said "he looks so normal!" Now, from anyone else I would have been offended by this comment... but coming from her and our history together, I know she meant it as the utmost compliment. She said he's lost that "preemie" imbalanced look and now like a normal, healthy, little boy. :-) He was in a good mood for that appointment too, so lots of smiles and interactions -- she didn't have to say much to him at all and he'd flash her a smile. She claimed he's developmentally around 6 months, and due to how sick he was, she wouldn't expect him to be any further now. She's finally the first person that has ever said that, it feels like everyone else says "he's not doing xx, he should be here." She confirmed he was much further along on the social side though (9-10 months)... we could have predicted that! Our little ham.

When we wrapped up she said "this is why I just never know about these kids, I just can't tell you what the brain is going to do, and sometimes they really surprise me... Lucas has been one of them that is surprising me." She asked me to email her the day we do the CT scan with the Neurosurgeon in September because she really wants to see right away what the expansion looks like now. I'm trying not to get my hopes up (as there is still that fine line between being optimistic and realistic), but I'm so encouraged by this visit! When I got out of that one, I couldn't call Bran fast enough to give him the good news. The last one -- GI -- I finally was able to breathe a sigh of relief. After being the Calorie Nazi the last two months and obsessed with him getting enough ounces, she said she was very pleased. He has slowed down a little on weight gain, but is still following the curve (his own curve, of course). I've been paranoid since she told me she was considering making us put the NG tube into his stomach every night, and especially because his intake has really slowed down lately and he wasn't anywhere near the minimums she set for him. But somehow, he's gaining enough weight even on the low volume he's eating to satisfy her. Whew! He's up to 18 pounds now (should be around 22-25) but hey, that's a looooooong way from one pound!

So, what else is he doing now? Blowing raspberries, jumping, rolling over from tummy to back, and full-on belly giggles!! There's nothing better than hearing that laugh! And we got our first toother this past week, and the second one is not far behind it! Our little guy is growing up! ...More in a few weeks!

The Chair

"When you come to the end of all the light you know, and it's time to step into the darkness of the unknown, faith is knowing that one of two things shall happen: Either you will be given something solid to stand on or you will be taught to fly." -- Edward Teller

So Lucas has a new chair... a "positioning" chair, they call it. His OT recommended that we use one from their facility because Lucas is probably still months away from sitting up, and this chair puts him in the proper position so he can use his hands and concentrate on fine motor skills. They gave it to us on loan (apparently they are very expensive and take many months to get approved through insurance), but their facility has several of these from parents that donated them after they were no longer needed. Honestly, I wasn't prepared for this... when she said "chair" I'm thinking something portable, like a Bumbo seat, but more sophisticated. I walked into their equipment room and it was nothing even close to what I had pictured. There were several contraptions that we tried out, she asked me to bring Lucas there for sizing. The only way I can describe these things is something you would see Christopher Reeves in -- not really a wheelchair (but not far from it), with trunk supports, head supports, padding on both sides of the head, etc. It took my stomach. I felt like I was getting a hard dose of reality, smack in the face... I hadn't gotten around to dealing with that reality yet, that this may become our lives. Wow. Its not that I wouldn't be ok with it, I just wasn't prepared that day. I had to fight back tears as she moved him from chair to chair, and I had to step out of the room at one point.

The PT helping us wanted to try Lucas on a treadmill that day (yes, I said treadmill). They strapped him into this thing and tried to get him to walk with the movement. It didn't go over well at all... he's a long way from that! And the PT was very aggressive as he whined and cried to get out, so Mom was not happy. I'm going to need more time to come around to that one. I'm actually glad I met this PT and got to see her personality because she was the one originally signed to start working with Lucas. After that meeting, Gabrielle changed the PT to someone else that would "fit" us better. Whew. We now have a girl named Melody, she is so sweet and gentle with him (but stern when she needs to be), and we love her!

Gabrielle (our OT) actually apologized to me afterwards, she said she should have prepared me and she was sorry that it took me by surprise. She reassured me that this was temporary and not to get too caught up in everything I saw. Still it was tough to swallow.

So we picked out "our" chair out of about ten, and luckily this one had removable head supports, so it doesn't look as scary (we actually ended up with the most mild contraptions of all the chairs). That appointment actually took place a month ago, but it wasn't until now that I finally mustered up the energy to put it together and have it sitting in our home. I think I was in denial that we needed it and that it could really help him. It took me awhile to come around to it and Gabrielle went on vacation for a few weeks, so it gave me an excuse not to use it for awhile! :-)

Much to my resistamce in taking it home, we have found that it is actually very good! I'm over it looking large and hideous in our home, with decor from the 80's, and coming to terms that if it means disabilities, then that is what it means, and I have to accept it at one point. I've come to the acceptance too that he may special equipment to help him learn, as I've recently learned of many other micro-preemie parents that needed that step. But hey, if it gets the child to eventually walk on their own, that is all that matters.

Its actually quite nice, we can push him up to the dining room table and he plays, and plays, and plays at the table, and sits there like a big boy... something we had trouble doing for any length of time on the floor.

Sitting up like a big boy in his new chair

On the treadmill

Not a happy camper! (this is Gabrielle in the black shirt)

May Update

Pictures are posted! I finally sat down for a few hours last night and got them organized. I am so behind! And we know it… we are starting to get some very “direct” emails saying where the heck are the recent pictures and from his first birthday party? I have just been SO busy with work and some travel lately… by the time Lucas goes to bed in the evenings, I have no energy to organize pictures! When you see how many images there are, you’ll understand why this was no small task! And, you’re just getting a fraction of what was taken! I just posted the pictures from his birthday party and the weekend visit from my family, as well as an album for March/April, and I’ve included some of the professional photos we had taken for his first pictures in March. And that’s only half to get me up to date! I’m still working on pictures from May and the March of Dimes walk.

What have we been up to… well, Lucas got his first haircut (and is already due for another one!), he is cutting his first tooth (with any mercy, it will finally pop through this week, its been right on the edge for many days now and causing him fits), and he took his first visit to Alabama over Memorial weekend. Again he did great on the plane, no fussing at all! Everyone was so excited to see him, especially his great-grandmother, Mima! She’s been asking for five months when we were bringing Lucas down there. I can still hear her saying, “Here’s my sweet ba-by!” (by the way, “baby” is pronounced with four syllables in Alabama ). We had a great time just hanging out on the lake, and Lucas got his first boat ride from Uncle Jimmy. One afternoon we went out on Jathan’s houseboat and Lucas took the longest nap… I think he loved the sound of the motor and gentle sway of the boat. We also enjoyed seeing Joanne and Justin, Aunt Betty, and dinner with Jackie, Bruce, Alli, and Blake. Pictures are coming!

We had our March of Dimes walk on back on May 4 in Lucas’ honor. As a team, we collectively raised $6370! Thank you SO much to all that contributed and to our team that raised money. So much more than I ever anticipated! This is such an important cause and is absolutely the reason Lucas is here today. Among many things, they are responsible for the first NICU, and just in the last few years, micro-preemies born at 23, 24, and 25 weeks now have a real fighting chance. My Mom flew in for the weekend, and my girlfriends Anna and Marcia came in from Florida to join us. We found out later that Bran’s best friend, Red, was going to surprise us by flying up from Alabama that weekend, but didn’t end up making it. March of Dimes did a profile on some of the babies of the family teams, and asked me to submit pictures and a write-up on Lucas. It turned out really cute and I was so proud to see it displayed there. The book was open to his page for a long time and many people read it and came up to us saying , “So, this is Lucas?! What a long way he’s come!” I was so proud to walk with him and our little celebrity! We also had walkers on our team in Ohio and in Charleston, SC, and my Aunt Connie walked in his honor and raised $300 in NC.

Lucas is doing great! He is constantly smiling! He is the happiest, well-mannered baby I’ve ever known. I swear, the boy never cries (other than the post-surgery days when he was in pain, or when he gets shots of course). Even with teething, he never cries, he’s just whiny, unsettled, and a bit feisty. We’ve had some challenges with him eating the last couple weeks, so I don’t know where we are right now with weight gain and we’re a little worried. He’s dropped off wanting to eat pretty significantly, we believe attributed to teething. Normally, it would be no big deal and typical for a baby to drop off for awhile teething, but since we’re having to count calories with him and he’s already at taking such a low volume, this is definitely a concern. Right now I can’t get more than 16 oz in him in a day… which is about ½ of what a FT baby would eat and several ounces under what the doctor wants him to get. Fingers crossed that everything will change once those two pearly whites come through the bottom gum.

We had the sleep study repeated two weeks ago. I hate doing it, but I guess I’m becoming an old pro at it and this last time wasn’t so bad. It’s a bit concerning that the technician recognized me walking in and said, “well, hey there, you’re back again huh?” Ugh. I just got the results this morning and it is pretty much what we expected… good news/bad news. The good is that the “central” apnea is much improved since the surgery, so the pressure from the one ventricle failing to drain was the cause and we can probably safely say the surgery was a success. A big relief! We see the neurosurgeon again this Wednesday as our first follow-up from the surgery, so we’ll also see what she says. The not-so-good news is that the obstructive apnea is still there, which is what we figured it would show. Since we’ve taken a few trips lately with Lucas and slept right next to him, I can really tell he’s waking up many times due to not being able to fully take in a breath (kind of like seeing someone stir that snores badly, or constantly wakes up because their breathing is interrupted). This is a problem because if Lucas can’t stay in the “deep” stage of sleep, then it affects his ability to gain weight and get adequate rest to develop properly. We still have him on oxygen at night which helps him through the apnea. We’ll probably have to continue this until we figure out how to resolve it. We go back to the ENT the first of July and he’ll tell us whether he still thinks its enlarged tonsils and whether they have to come out.

We were planning on getting his nose repaired this summer by the plastic surgeon (which we saw again last week), but he wants to wait until we get to the bottom of the apnea first… if Lucas requires surgery for tonsils, he wants to get that out of the way first, then think about repairing the nose when oxygen is no longer required. Or, if ENT doesn’t want to do anything just yet, we can proceed with repairing his nose but have to come up with another method for delivering oxygen to him overnight. He said we’re in no rush to repair the nose, we could do it this summer, this fall, or even wait a year. We’d like to get it out of the way when he’s young, but again, there’s no rush.
There’s really no other health issues to report (thank God). I am still hopeful that our specialist appointments will start to taper off (we’re still seeing 6 of them regularly).

The main thing we are focusing on now is moving him forward with gross motor skills. He’s still lagging pretty far behind and they’ve decided to add physical therapy to his routine. Now he has Vision Therapy, OT, and PT – all in our home. He seems to be progressing well cognitively and very well socially… but he’s really taking a long time building strength. He is still not rolling over or sitting up quite yet. I would say he is at a 6 month level right now in motor skills, and an 8 month level socially (even though he’s now officially 14 months). He’s starting to show receptive language skills and very good social responses. His gross motor skills lagging is most likely due to his vision challenges, or at least it is not helping anything! I read recently that the new stat for micro-preemies, is it takes one year for every month they were hospitalized to catch up. So, no longer are they thinking he will catch up by the time he’s 3.5, it will most likely be closer to 5 years old. This timeline accounts for the months that passed in the hospital where he was very sick, so he can’t be expected to be where another 25-weeker is, that did not suffer a brain bleed or meningitis. I’m confident that he’s catching up, he’s just on his own schedule. Every day we watch him in amazement as he continues to do new things (all things that the doctors said he wouldn’t do). “Proud” doesn’t even begin to describe how we feel. Our PT evaluation was really promising, she felt he looked really good and was just very tight (but he is not yet showing any contracture in his legs (relief), which would be an early indication of CP). We have to help him with the tightness though, or he will never walk. We have a whole new set of stretches to do now, mostly concentrating on hips and legs now. I didn’t realize how tight he was until I saw an 8-month old baby at my neighbor’s house recently, practically putting her leg behind her head. Lucas can barely get his legs up to his hands to hold his feet, certainly no higher than that. But then again, most people can’t!

I’ll end with an update on his eyesight. Much-much better! We had a vision appointment today and to quote her, she said “I’m amazed at how well he’s doing compared to a month ago, I would have never predicted this.” Its not quite where we’d like it yet, but its certainly progress. I think we’re back to where we were before the surgery in March, when everything digressed back to not seeing anything. He’s now able to move his eyes straight forward again and seems to be catching objects in his central visual field (something he wasn’t doing at all a month ago). There still is no response to the right visual field, but the left and central are improving greatly. I think he sees a few inches in front of him, but no further…. but that’s more than before too! I think it is going to just take more time to develop. His eye is still dilated on one side, we’re not quite sure if it just needs more time or if it will be that way permanently. Either way, things seem to be moving forward and improving.

The brain is truly miraculous in how it makes accommodations and continues to make new connections, watching these little changes is amazing. He can’t quite hold a gaze yet for longer than a few seconds, but he’s really trying. His eyes kind of scan things very quickly, as he tries to fix on it. He’s able to look at faces much better than before (faces are very difficult for the visually impaired, as they are extremely busy). Again, he can’t stay on it long, but at least he’s seeing something and his eyes are no longer parked off to the side. He just recently found his hands and can see them very close up. Its so great to see him examining them! Again, another “normal” baby milestone (at about 3 months), but when you watch your child not be able to really see anything for a year, it’s a BIG thing to watch him stare at his hands like he just got a manicure. It’s the first time he’s ever really looked down to notice anything. When he’s on his back and grounded (not having to worry about trying to hold himself up) his eyesight is also much better. The vision specialist said this will improve as his motor skills improve, giving him better vision while he’s upright. So… patience, patience, patience. We are witnessing many miracles in progress.

More pictures are coming, and hopefully some video. He’s growing so fast – just wait til you see him with his “big boy” haircut!