Sharing is Caring

This was too cute not to share, even if I've already posted once today.

Gus has been sharing his food. Only sometimes does he fake us out and eat it himself instead with a big devilish grin. It's really improved his relationship with Schnitzel, our mini dachshund.

Also of note is that he's doing so well feeding himself. There are getting to be more and more foods we can let him feed himself, widening the scope from just Cheerios and Goldfish. This was grilled cheese and grapes.

Getting a Little Easier

One of my biggest resentments about Gus having CP and the accompanying complications is how hard it is to take him places. Things just aren't set up or made for someone his size who can't sit up on his own or walk. We carry around a lot of extra stuff to try to make adaptations. I try not to cringe every single time we go in to a restaurant and are asked, "Would you like a high chair?" And I try to ignore the stares in the restaurant and at the grocery store when Gus is in his infant car seat that he's spilling out of - we call it his pumpkin seat. But he can't support himself in the shopping cart seat and he's long since outgrown the weight limit on the built in infant seats that some of the shopping carts have. And he's WAY too heavy to carry for any distance now. So we have learned that if we get a booth at the restaurant we can sit him at a variety of angles in his pumpkin seat so he's not sticking out in the way of the servers and he's part of the action at the table with us.

Well, Gus has been doing so much better sitting and we tried his little portable high chair again last night and - He Can Sit In It! I can't tell you how much easier this will make things for us.

We have been traveling with his pumpkin seat, his tumble forms chair, and his big wooden table just so we can eat out and also have a place to let him eat and feed himself at where we're staying. Replace 3 big bulky things with one folding travel high chair and you get happy mommies! Anything that makes our lives a little easier is a good thing!

Maybe soon we won't have to pack the van chock full just for 5 days away. Nah, I'll find other things to bring because that's what I do! :) I'm already excited to think we've recovered enough space by using the high chair that I can bring Gus's wagon for Corn Fest.

July 2012 ABM with Marcy

We recently returned from Chicago where we took Gus to see Marcy for 8 lessons. Poor Marcy and poor Gus! He's been so tired and I think he's working on teething again so he had lots of toddler moments on the table this time. They still managed to get a lot of progress made. Here was my favorite:

Gus swings around using his arms very well for that last part of coming to sitting. He doesn't have quite all the elements yet but he's getting closer all the time! Having his hands down on the table and on his knees has been a huge and recent breakthrough for him, too. He's still got his left hand balled up here but the next lesson he had it opened up and flat on the ground!

The ABM back story through June 2012

The Anat Baniel Method has given us our son back. The influence this work has had on him is far too great to even try to describe with words but I will try to brush the surface. My water broke at 27.5 weeks and I held onto Gus until I reached 29 weeks. He was diagnosed with PVL, brain damage to the white matter area in the brain responsible for motor control. Eventually the Cerebral Palsy diagnosis came as well. He was not a happy child, which broke our hearts. For a while if he wasn’t eating or sleeping he was fussing or staring blankly into space. Doctors and therapists were noticing some spasticity (muscle tightness) but we just couldn’t figure out why he wouldn’t look at us or wasn’t smiling. We had ourselves convinced at one point that he was blind since all we really knew he looked at were lights. He wouldn’t look at or track a toy in front of his face. He didn’t hold or reach for anything. We were desperate to know what was wrong and how to help him. In June of 2011, when Gus was 5 months old, we scheduled 6 cluster lessons of ABM over 3 days. In the very first session, within the first 5-10 minutes, it was like Gus woke up. He had laser like focus for Jon, the ABM practitioner. Our fears of him being blind were way off!! In the second lesson he turned his head from far left to far right to track a toy. By the third, he actually reached for a toy. I cried with joy! He let us lay him down without crying and at one point was just looking at his hand in front of his face like he’d never noticed it was his before. The miracles of those first lessons were amazing. Gus was so much happier. His personality started to flourish.

We began doing 6 lessons every other week and kept that up until about Sept when we backed down to about 6 lessons per month.

In late Feb and early March, we traveled out to California to the ABM Center to have Anat Baniel (the AB of ABM!) evaluate and work with our son. We had 10 lessons while we there - two a day on the weekdays. Anat saw us for 3 of those and we saw Sylvia and Neil for the rest. Here are some of our observations:

Gus started holding his own bottle to feed himself - our message from the folks at the Center was loud and clear - we do too much for him! Let him do things for himself and it's okay for him to get a little frustrated.

He continues to take his own bottle now that we're home, though sometimes it takes some goading.

He's been feeling himself so much better. They really loosened up his lower and middle back and that's helped his head control and comfort a lot.

He's eating so many more foods now. The consistencies don't seem to bother him as much and he's choking a lot less. He wants to try everything on our plates!

He bends his knees up and draws them so much closer to his chest now (I was just about crying for a while there seeing other kids playing with their feet and sucking on their toes because Gus was so spastic his little toes didn't reach anywhere near his mouth.)

He is kicking and moving his legs much more freely

He plays using both hands so much better. His left arm and hand are working much better now. 


At one point during the week I was handing him a piece of food and he actually reached for it with his left hand - unprecedented!

We had some pretty exciting news from 2 weeks after getting home from California. Ever since working with the Master folks for ABM out in California, Gus was much more comfortable lying on his back on the floor to play, which is where they want him as much as possible. During his lessons with the practitioners they had been working a lot on rolling and scooting. One of them said, "He has to realize that he CAN move and then things will get easier!" Well, I'd been a little disappointed that he hadn't been continuing to try to roll on his own. He did roll one time outside of lessons on the night of the 4th day of lessons out in CA but that was it - no repeats. I've been working really hard to appreciate the other stuff above and how those are pretty significant but I must admit I'd been hoping for even more miracles! 


Then, about 2 weeks home, Maria had laid him on the floor on his back to play and she was busy doing something on her computer. When she looked down he was laying 90 degrees rotated from how she had laid him there. That alone was really big! Then the same thing happened but she was watching him this time. He was actually trying to roll over and in the process was rotating himself around a little bit with each attempt. That was a really HUGE breakthrough for him to be attempting to move on his own. As the practitioner said, he has to first get the concept that HE can control where he goes so this is a great step!


Then the next day he did also get himself onto his side from his back in order to reach a toy. Also big stuff and new for him! Before that where you laid him on the floor was exactly where he was until you picked him up again.

He was also really experimenting with movement then. It was so awesome that he was finally getting some positive results for himself that he was jazzed about and wanted to keep escalating! He was on a roll! Okay, I couldn't resist that one...

Then the big miracle - HE ROLLED AND ROLLED AND ROLLED!!! About 6 PM one night M burst into my office to say he had rolled all the way over to his belly, rested a moment there on his elbows, and then continued rolling over to his side to get to a toy that was pretty far away!

And he did it again the next night. I watched him do 2 complete rotations in a row. And then he did it again and tried to roll the other direction and couldn't quite get it. Amazing - what a breakthrough!

Since California, and at Anat’s recommendation, we are trying to really pick up the pace and have him seen roughly every other week for intensives. We go see our regular guy about 4 hours North of us and then see Marcy. Marcy lives and works mostly in NYC but travels to Chicago occasionally where we're trying to see her about once a month. Marcy has really worked a lot on his left side and hand, his core, and he has been sitting up so much better. He's not getting himself up into sitting yet but is putting more and more of the pieces together all the time. We're really hoping that crawling and independent sitting up are coming soon.

It's a huge time commitment and quite a serious financial one as well but we feel it's best for Gus's long term abilities to get moving. So much of the modern medical approach and outcomes with CP are just terrifying to us. But anyway, with ABM we still believe he will sit, and crawl, and walk, and maybe even run! As the ABM folks say - make the impossible possible!

From the beginning

Maria and I met at church on Aug 23, 1998, in Cincinnati - it was interest at first sight. We exchanged vows exactly 2 years later, and decided to share a kidney in January of 2003. Maria always wanted a herd of kids but I dragged my feet until I realized we might look a teensy bit less silly if we had the excuse of doing all our fun stuff with a kid in tow.

It took us years of working through fertility issues to finally conceive our darling boy on 7-11 of 2010. He's my little 7-11 Slurpy.

My pregnancy seemed to go well enough. I was constantly nauseous the entire time and never really felt "well", had trouble gaining weight for the first time in my life, but the doctors all seemed to think things looked fine...right up until they weren't. At 27.5 weeks I felt like I might be leaking so I called the nurse who said I should come in right away that afternoon. The OB did 4 different tests to see if the fluids were amniotic fluids and said that 3 of the 4 were negative. However, I was 3 cm dilated and it was much too soon for that so he had me admitted at Miami Valley Hospital for 24 hours of observation. No sooner was I in a room there trying to settle in for the evening when my water definitely broke. I was quickly transferred to the PICU where they did a magnesium drip, the first steroid shot, and whatever else to stop the pre-term labor. It worked and I was told I was now an inpatient until Gus decided to make his appearance. They gave me statistics about something like 75% of women have their baby within 48 hours in my situation but they'd sure like for me to hang onto him until about 34-36 weeks of gestation. I made it the 48 hours, got the second steroid shot that helps the baby's lungs develop faster, and laid around the hospital for 10 days. Gus was at exactly 29 weeks on my birthday when I went into labor again, spiked a fever, and they took Gus by C-Section. That was January of 2011.

Gus spent his first 73 days in the NICU. He had a lot of what they call Events where he'd set the alarms off by forgetting to breathe but he always came back quickly and the most intervention he needed was to touch him so he'd startle and start to breathe again. We were really very fortunate all during the NICU stay as we never had an emergent call saying we need to come to the NICU right away, there were no brain bleeds, his heart checked out well, he made steady progress from the vent to lower and lower settings on the CPAP and eventually just to the oxygen. The biggest issue seemed to be his apnea and they just couldn't get him off the oxygen. He was born at just barely over 3 lbs and dipped to 2 lbs, 11 oz, before starting to gain weight but even with that he made more and more progress all the time with a pretty steady upswing in weight. We sort of figured this was just a bump in the road and, after all, we had friends with a 28 weeker and she was a thriving toddler with just some swallowing and perhaps some speech stuff that seemed to be getting overcome with therapy. We fully expected to come out of this unscathed.

Then, about 6-7 weeks into his NICU stay, the doctor gathered us together and gave us some bad news. They found in a routine head ultrasound that Gus has PVL, periventricular leukomalacia. There's a good fact sheet on PVL here, http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/neuro/pvl.html. In brief, he has brain damage in his white matter area that controls motor function. Fortunately, there is no damage to his grey matter, the part of the brain responsible for knowledge and learning, so his IQ and intelligence should be normal, whatever normal means!

We took our guy home at the end of March still using oxygen during feeds and on a monitor so we could stimulate him when he stopped breathing. It was so wonderful to have him home with us and not an hour away in the NICU. You can see his little cord in the picture below.

After being off for a crazy long 15 weeks of work, I finally went back and learned how to balance being a mother and an employee. We made it work!

I guess it was around May, when Gus was 4 months old, that we started to have some major concerns. He just didn't seem happy. If he wasn't eating or sleeping, he was fussing. If you put him down, he'd really scream. By early June we had ourselves convinced that he was legally blind. All we knew he really looked at were lights. He wouldn't track a toy or anything across his field of vision. His little muscles were also extremely tight. I couldn't move his feet up anywhere near his mouth, they would only reach maybe halfway and you know how flexible most babies are. We didn't see a turnaround and get relief from our fears of him being blind until we found ABM, the Anat Baniel Method. We took him to see Jon Martinez in Antwerp, OH, (he's now in Fort Wayne, IN) over Father's Day weekend in June and it was like Gus woke up. I guess by ABM terms they would say he woke up to himself. I'll do some separate entries on the miracles of those first ABM lessons. Suffice it to say for now that I believe that was the turning point for Gus who is now a happy little boy taking in all the sights and sounds around him. We eventually got the official Cerebral Palsy, CP, diagnosis. His left arm, hand, and leg seem to be the most affected, though neither leg is really great.

Since June we have seen OT's, PT's, ABM practitioners in Antwerp, Columbus, Cincinnati (he doesn't live here so we can only see him when he's in town visiting his parents), California, and Chicago. We've spent I don't know how many thousands of dollars on therapies and traveling - probably going on $15,000 just for 2012 and counting. The van we bought new in September  is nearing 25,000 miles already in less than a year. The great news is that Gus is making improvements all the time.

He started rolling to one side in March, and to the other side a few weeks later. He started being able to use his left hand more in the past few months and sometimes is even able to grip things between his thumb and fingers, the "right" way, in that hand. He can support himself when placed in a sitting position for a short period of time, though we're still working hard to get him to where he can get himself up into sitting. He's doing some small stuff that will be pieces he'll need to put together to eventually crawl. He just turned 18 months. That's real age, for you fellow preemie moms who talk about adjusted ages all the time.

Oh, he just last month gained the ability to raise his left arm past mid-chest level where it always seemed to get stuck before. He only plays the So Big game for Grandma Carol, though.

We may not be where we expected or hoped to be but we sure are enjoying the journey with our little miracle boy, who makes us laugh and smile every day!

I'm starting this blog to chronicle Gus's journey with all the little heartbreaks and triumphs along the way. I'd like to post at least 1 little something every week. Thanks for reading!