HOP ON THE BUS, GUS: 2 Moms raising our 29 week preemie with PVL and CP
Wednesday, September 26, 2012
Better video of the squatting to standing
Jon saw our crappy quality cell phone video on our Thank You post and kindly cut and put this together from the video he took during Gus's lesson. Check out that smile Gus give Maria when he stands up!
Monday, September 24, 2012
Development Wonders
I just can't get over the way Gus learns. For other parents, I suppose you've already seen and experienced these things but for me it's just fascinating to see the things this kid picks up.
He is obsessed with what is on his tee shirt every day so I had chosen this varsity style shirt and said to him, "You're going to be the 'Big Man on Campus' today, see?" He points to it and says, "Two!" I whipped the shirt around to where I could see it again and oh my goodness, there IS a 2 on it! Where did he learn to recognize the number 2?!
Then he was watching "Super Why", a cartoon about letters and stories and words. They were going through the alphabet and stopped to talk about Q and I hear him repeat after them, "Q". Then they were talking about the letter D and they ask, "What sound does the letter D make?" Before they gave the answer he was making the D noise. How in the world does he know this stuff?
In preparation for being out and about at Corn Festival, I have been asking him what his name is. I've never heard him say, "Gus". Usually, if he answers, he answers, "Ma". And when I ask him how old he is and hold up 1 finger, he'll hold up 1 finger, too. But when I say, "One", he says, "Two". Because of course that's what comes next. I swear he knows the answers and is capable of getting these 2 basic answers correct but I think he's such a jokester already.
Also, this kid has really gotten into playing pretend lately. He simply adores making car noises and playing with his matchbox cars. And I've watched him take a toy in each hand (a great developmental milestone for him in itself as his left hand gets more and more function!) and have each toy talk to the other. He just cracks me up!
Sitting on the couch the other day with Grandma and one of our German Shepherds, Esther, he leans over to Esther and says, clear as anything, "Give me a kiss".
I can't wait to see what he comes up with next!
He is obsessed with what is on his tee shirt every day so I had chosen this varsity style shirt and said to him, "You're going to be the 'Big Man on Campus' today, see?" He points to it and says, "Two!" I whipped the shirt around to where I could see it again and oh my goodness, there IS a 2 on it! Where did he learn to recognize the number 2?!
Then he was watching "Super Why", a cartoon about letters and stories and words. They were going through the alphabet and stopped to talk about Q and I hear him repeat after them, "Q". Then they were talking about the letter D and they ask, "What sound does the letter D make?" Before they gave the answer he was making the D noise. How in the world does he know this stuff?
In preparation for being out and about at Corn Festival, I have been asking him what his name is. I've never heard him say, "Gus". Usually, if he answers, he answers, "Ma". And when I ask him how old he is and hold up 1 finger, he'll hold up 1 finger, too. But when I say, "One", he says, "Two". Because of course that's what comes next. I swear he knows the answers and is capable of getting these 2 basic answers correct but I think he's such a jokester already.
Also, this kid has really gotten into playing pretend lately. He simply adores making car noises and playing with his matchbox cars. And I've watched him take a toy in each hand (a great developmental milestone for him in itself as his left hand gets more and more function!) and have each toy talk to the other. He just cracks me up!
Sitting on the couch the other day with Grandma and one of our German Shepherds, Esther, he leans over to Esther and says, clear as anything, "Give me a kiss".
I can't wait to see what he comes up with next!
Friday, September 21, 2012
HOW CAN WE THANK YOU!?
I've been meaning to write this post for a little while now but I just can't quite get over the generosity of so many people who were willing to donate their hard-earned money to help Gus, and that have offered their prayers and moral support. This post is dedicated to all of you who care about us and our son's progress. You totally rock! Nothing seems quite a sufficient expression of our gratitude but if I pondered it long enough to know exactly what to say, this post might never get written. So, THANK YOU!!!
Anytime things get hard and I start to feel down, getting into the Why's and What if's, it seems there is one of you there. 14 people donated $832 in sponsorship for our walk which takes place on Saturday morning. 25 of my co-workers at Santa Rosa Consulting contributed over $3K to Gus's ABM Grant Fund. 4 family members and friends seeded the first $2300 of the Fund. It seems people are always offering to help us out and lift us up in prayer. We mean it deeply when we say we couldn't do it without all of you!
He is doing really well and making great strides. His last trip to Fort Wayne was last week and here is what our ABM practitioner, Jon Martinez, had to say:
He did and is doing very well. I
always notice changes everytime he comes back for more lessons. He is
using his left hand much more in play and reaching overhead quite a bit
which is nice to see. Transitioning from sitting to being on knees is
getting much easier for him to organize and its great to see him pushing
with both hands to move his weight back and up to sitting. Overall his
tone is much better which is another plus.
I've really noticed his muscle tone, or spasticity, has been much less obvious, as Jon mentions above. He still gets rigid and has involuntary movements but he can generally bring himself back into a relaxed state if he's not overwrought emotionally or completely exhausted. This allows for much freer movement and more exploration on Gus's part.
He's still struggling with getting himself from lying on the floor up into sitting. Often he'll be on his back and just tighten his tummy muscles like he's doing a partial sit-up. He grimaces from the effort, then cries and looks to us. He's done this so much that I got to thinking - something has to be rewarding about this behavior for him to continue to do it rather than attempting to come up into sitting from the side or from his belly, like his practitioners have been showing him. Then it occurred to me - just often enough one of us will take pity on him and get down on the floor to play with him. Most of the time we'll sit him up for that playtime. Oops! We're his worst enemy after all! We're repeating the very offenses that the folks at the Center in California worked to break out of us. D'oh!
His core support has improved greatly. He's able to maintain himself in prop sitting for longer and longer. He just doesn't seem to be able to shift his hips or move his legs to help maintain that position or to be able to wiggle around once he's there. And it seems like his arms are doing the right things on his belly but he can't quite get his legs under him to do anything resembling crawling yet. One of the other moms I've networked with has compared watching the progress in our little ones to watching grass grow. It happens but it's slow and takes a lot of time!
Here is a video that came from Maria's phone so pardon the poor quality but this is sure something we haven't seen Gus do before! Maria sent it to me while I was out to lunch with a co-worker and it was all I could do to not cry with happiness to see this kind of movement!
Please continue to think of us, send us positive thoughts, healing energy, pray for us if you pray. Each and every one of you is a huge blessing in our lives. We look forward to continuing to share Gus's journey knowing that his strides forward are possible because of YOU!
Anytime things get hard and I start to feel down, getting into the Why's and What if's, it seems there is one of you there. 14 people donated $832 in sponsorship for our walk which takes place on Saturday morning. 25 of my co-workers at Santa Rosa Consulting contributed over $3K to Gus's ABM Grant Fund. 4 family members and friends seeded the first $2300 of the Fund. It seems people are always offering to help us out and lift us up in prayer. We mean it deeply when we say we couldn't do it without all of you!
He is doing really well and making great strides. His last trip to Fort Wayne was last week and here is what our ABM practitioner, Jon Martinez, had to say:
He did and is doing very well. I
always notice changes everytime he comes back for more lessons. He is
using his left hand much more in play and reaching overhead quite a bit
which is nice to see. Transitioning from sitting to being on knees is
getting much easier for him to organize and its great to see him pushing
with both hands to move his weight back and up to sitting. Overall his
tone is much better which is another plus.
I've really noticed his muscle tone, or spasticity, has been much less obvious, as Jon mentions above. He still gets rigid and has involuntary movements but he can generally bring himself back into a relaxed state if he's not overwrought emotionally or completely exhausted. This allows for much freer movement and more exploration on Gus's part.
He's still struggling with getting himself from lying on the floor up into sitting. Often he'll be on his back and just tighten his tummy muscles like he's doing a partial sit-up. He grimaces from the effort, then cries and looks to us. He's done this so much that I got to thinking - something has to be rewarding about this behavior for him to continue to do it rather than attempting to come up into sitting from the side or from his belly, like his practitioners have been showing him. Then it occurred to me - just often enough one of us will take pity on him and get down on the floor to play with him. Most of the time we'll sit him up for that playtime. Oops! We're his worst enemy after all! We're repeating the very offenses that the folks at the Center in California worked to break out of us. D'oh!
His core support has improved greatly. He's able to maintain himself in prop sitting for longer and longer. He just doesn't seem to be able to shift his hips or move his legs to help maintain that position or to be able to wiggle around once he's there. And it seems like his arms are doing the right things on his belly but he can't quite get his legs under him to do anything resembling crawling yet. One of the other moms I've networked with has compared watching the progress in our little ones to watching grass grow. It happens but it's slow and takes a lot of time!
Here is a video that came from Maria's phone so pardon the poor quality but this is sure something we haven't seen Gus do before! Maria sent it to me while I was out to lunch with a co-worker and it was all I could do to not cry with happiness to see this kind of movement!
Please continue to think of us, send us positive thoughts, healing energy, pray for us if you pray. Each and every one of you is a huge blessing in our lives. We look forward to continuing to share Gus's journey knowing that his strides forward are possible because of YOU!
Thursday, September 6, 2012
Coming out of the closet to ask for money
We applied for and received a grant for Gus to help pay for his ABM therapies several months ago now. A few people had approached us about helping out and they really wanted it to be tax deductible so we found Building Blocks for Kids. We thought the whole grant might get funded from the group of folks we'd already talked to but the financial picture for them changed by the time we got the grant in place. Having those monies funded and available to us this year is a real game changer for us so here we are asking for your help.
There are plenty of reasons not to give it - I (Christi) have a great job with a solid income, we live in a nice house in an amazing neighborhood, we drive a 1 year old van, we could have managed our money better over the years and be in a better position for this rainy day, we still spend some of our money today on family fun and outings because Gus loves to get out, be social, and do stuff, the list goes on. You, like so many, may be already scrimping and saving just to get by and are just one unexpected mechanic bill from financial disaster yourselves. No problem - we always appreciate the morale support, love, and prayers so please keep those coming! They are priceless to us and keep us going!
If I haven't convinced you otherwise already, please consider sponsoring our walk on September 22 with Building Blocks for Kids. Here is what I wrote on our Team Page there:
The link to sponsor us or to join us in walking or running on Sept 22 is here, https://bos.etapestry.com/fundraiser/BuildingBlocksforKids/5Kwalkofhope/team.do?participationRef=1809.0.431280212
Regardless of whether you can or will give to the sponsorship fund, thank you for being part of our lives and for caring about what's happening with our sweet gift, Gus.
There are plenty of reasons not to give it - I (Christi) have a great job with a solid income, we live in a nice house in an amazing neighborhood, we drive a 1 year old van, we could have managed our money better over the years and be in a better position for this rainy day, we still spend some of our money today on family fun and outings because Gus loves to get out, be social, and do stuff, the list goes on. You, like so many, may be already scrimping and saving just to get by and are just one unexpected mechanic bill from financial disaster yourselves. No problem - we always appreciate the morale support, love, and prayers so please keep those coming! They are priceless to us and keep us going!
If I haven't convinced you otherwise already, please consider sponsoring our walk on September 22 with Building Blocks for Kids. Here is what I wrote on our Team Page there:
Gus was born 11 weeks early and suffered a form of brain damage called PVL, which has resulted in him having Cerebral Palsy. Basically, his brain is missing some of the parts that control his motor skills. At 5 months old we as parents were witnessing an unhappy child who fussed anytime he wasn't eating or sleeping and would really scream if we laid him down. Though we've been so fortunate to have wonderful health care provided for him, the medical communities' advice at that time was to, "Wait and see." We knew we were losing our son to his own private world so we couldn't take that advice. After much research we found the Anat Baniel Method, ABM, and it had immediate and seemingly miraculous results for Fergus. It was like he woke up to himself and suddenly he was smiling, happy, and bursting with personality. Plus, he's been making huge strides in overcoming his physical obstacles. He has voluntary movement in all 4 limbs, he started rolling over at 14 months of age, he just recently started being able to prop sit like in the picture of him above. ABM focuses on accessing the brain through movement in order to help his brain re-wire itself so it can still perform the functions of the brain matter that was lost. Our current ABM schedule has us spending about $2600 a month between ABM lessons and travel costs to Fort Wayne, IN, and Chicago, IL, from our home in Cincinnati. None of it is covered by insurance. We feel a tremendous sense of urgency during these critical, early, formative years, to maintain his schedule in the hopes he can one day walk and maybe even run. Will you please help Gus in his journey to live as full a life as possible by sponsoring our team?
Your sponsorship dollars go 100% towards Gus's ABM and are TAX DEDUCTIBLE!
The link to sponsor us or to join us in walking or running on Sept 22 is here, https://bos.etapestry.com/fundraiser/BuildingBlocksforKids/5Kwalkofhope/team.do?participationRef=1809.0.431280212
Regardless of whether you can or will give to the sponsorship fund, thank you for being part of our lives and for caring about what's happening with our sweet gift, Gus.
Monday, August 13, 2012
Gus Gets Around
Gus Gets Around
Well, it's my turn to post (Maria). Earlier in the summer, Gus had his second annual trip to the Butterfly Show at Krohn Conservatory. This year, he managed to stay awake and enjoy the flowers, kids and butterflies. He was a little frustrated that he was not allowed to hold or pet the butterflies. He has not quite got the fine motor skills to delicately touch a butterfly with out the poor thing suffering damage beyond repair. We had a lovely day among the flowers and butterflies and had lunch outside in the tent.
Saturday, it was such a lovely day, we decided to visit our Cincinnati Zoo and Botanical Garden. We had not seen the Cat Canyon or the Cheetah Show this year. First, we stopped at Lorikeet Landing and I introduced Gus to our feathered friends. I used to take care of these birds at Petsmart so I didn't have any fear of having Gus around them. He was a little fearful at first but that gave way to curiosity.
Next stop, the Giraffes. Kimba was patient enough to let Gus feed him. He has absolutely no fear of feeding him and wants to pet them both. He has all kinds of Giraffe toys and they seem to be his favorite. Too bad we don't have more room in the back yard. They would certainly help keep the trees trimmed back.
Well, we were on to the Cheetahs. This is a picture of Gus and Mommy waiting for the show to start.
Danielle sets up the Whiffle ball for both the Serval, Cleo, and a young athletic volunteer. Cleo beat the dickens out of him.
Gus screamed his head off for Alicia when she came out with Sir Francis Bacon. That's one of his many girlfriends. She was asking for volunteers to help with the cheetahs but I don't think Gus knew what he was getting into.
Gus qualifies as snack food for Nia. She may not hold the world's record for the fastest land animal like Sara, but she is a lot faster than that Bolt guy everyone is talking about.
We also got to see the newest addition to the Cheeth show, Savannah. She is practicing her stalking and pouncing.
Before we go, we have to ride the train. A lovely young lady (about 4 years old) gave Gus a big hug and kiss while we were waiting in line. I'm gonna have to fight them off with a stick. Getting off the train is not so easy. I think he would ride it all day. A quick stroll through Cat Canyon, a little lunch and a big nap! What a nice day.
Our friend, Kathy, tries to protect herself from Quilliam, the African Porcupine.
We got to meet briefly with the Connellys. Gus gave Trista a big kiss on the lips. Fathers, lock up your daughters.
Before we go, we have to ride the train. A lovely young lady (about 4 years old) gave Gus a big hug and kiss while we were waiting in line. I'm gonna have to fight them off with a stick. Getting off the train is not so easy. I think he would ride it all day. A quick stroll through Cat Canyon, a little lunch and a big nap! What a nice day.
Thursday, August 9, 2012
He's healthy, Get Out!
Our little guy sure does get around. It was 3 days in Fort Wayne last week for ABM, this week was: Mon - Early Intervention home visit; Tues - OT; Wed - Pediatrician for 18 mos appt; Thurs - High Risk Clinic at Cinti Children's Hospital; Fri -be charming for his Aunt Judy who's spending the day with us, and next week is 3 more days in Fort Wayne for more ABM.
The Ped doc did his exam and declared that he was the healthiest child she'd seen in months. They did his last couple of vaccines and now he's all good until he turns 4 except for annual flu stuff.
At High Risk they did his exam and said he was so healthy they no longer needed to see him at clinic! Basically, "Get out - we have sick children to see!"
He's somewhere around 32.5 inches tall and 28.5 lbs, 80-85% among his peers for his actual birth date so that's a lot of peers who were not born 11 weeks early and who did not start out at a mere 3 lbs that he's surpassed. Such a miracle boy!
We suspect what's really at play in the docs shoving him out the door and delaying or ending any return is that Gus has found the terrible two's ahead of schedule. He sure does have strong opinions on everything these days! We've found these nice pouches that are so easy to feed him fruits and veggies on the go but now he must be the one to hold it himself, making meal times much messier!
We find ourselves wondering if there will ever come a time when we have a 24 hour period without crying and tantrums. Gus gets so easily frustrated if he wants something that he can't communicate to us or if we don't give in to his every whim. Perhaps it's been worse lately because he has 4 new pre-molars coming in. And last week's stress surely affected him.
He has become very interested in his books lately, too. Of course he likes to manage the page turning himself!
All in all, I'm happy to report it's been a much better week! How could it not be? Hope yours is wonderful, too!
The Ped doc did his exam and declared that he was the healthiest child she'd seen in months. They did his last couple of vaccines and now he's all good until he turns 4 except for annual flu stuff.
At High Risk they did his exam and said he was so healthy they no longer needed to see him at clinic! Basically, "Get out - we have sick children to see!"
He's somewhere around 32.5 inches tall and 28.5 lbs, 80-85% among his peers for his actual birth date so that's a lot of peers who were not born 11 weeks early and who did not start out at a mere 3 lbs that he's surpassed. Such a miracle boy!
We suspect what's really at play in the docs shoving him out the door and delaying or ending any return is that Gus has found the terrible two's ahead of schedule. He sure does have strong opinions on everything these days! We've found these nice pouches that are so easy to feed him fruits and veggies on the go but now he must be the one to hold it himself, making meal times much messier!
He has become very interested in his books lately, too. Of course he likes to manage the page turning himself!
Sunday, August 5, 2012
Gus and Maria Update - What a week!
So, let's start with a snapshot of this week's timeline:
So here we are on Sunday and I have one worn out little boy, one exhausted wife trying to recover, one grief-stricken mother in law, and a house in complete chaos with a million things to do. Oh, and the air conditioner stopped working at some point yesterday so the repair man is here now. But at least we have Maria home and she's doing better. On to some happier highlights from the week....
Gus really loved the zoo on Thursday. The Fort Wayne Children's Zoo is lovely. We walked through the loops for Africa and Indonesia, and rode the log ride through Australia before heading home for an early dinner. On our way out, we saw the train with all the people on it and I swear Gus said, "I want to go on that!" This kid comes out with sentences like that and then seems to never repeat it and refuses to say basics like More or Milk. I sure wish I understood more of how this language stuff works! Gus's favorites were the giraffes.
His ABM went well when he wasn't too tired and he did some nice things that are a definite improvement over previously. He's coming up on his hands so much better from both his stomach and while in sitting. That left arm and hand are especially noticeable in their improvement of this function.
He seems to be slowly catching on to the ways he can come up on his knees from his stomach. There's lots more work to do on this but it's so exciting to see him in a position that will lead to crawling!
Special thanks to those who came and visited Maria in the hospital this week while Gus and I were out of town! Very special gratitude to Annette who checked on her every day and stood at the ready to help in any way. We have a lot on our plates with Maria's health and Gus's CP but it's all manageable because of the support of our wonderful friends and family. We couldn't do it without you! Thank you so much for all the thoughts, positive energy, prayers, phone calls, Facebook messages, and gifts of your time this week and always! My team at work are also among our blessings. They are so understanding and accommodating through these situations. We have a lot to be thankful for and we are, indeed, thankful!
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So here we are on Sunday and I have one worn out little boy, one exhausted wife trying to recover, one grief-stricken mother in law, and a house in complete chaos with a million things to do. Oh, and the air conditioner stopped working at some point yesterday so the repair man is here now. But at least we have Maria home and she's doing better. On to some happier highlights from the week....
Gus really loved the zoo on Thursday. The Fort Wayne Children's Zoo is lovely. We walked through the loops for Africa and Indonesia, and rode the log ride through Australia before heading home for an early dinner. On our way out, we saw the train with all the people on it and I swear Gus said, "I want to go on that!" This kid comes out with sentences like that and then seems to never repeat it and refuses to say basics like More or Milk. I sure wish I understood more of how this language stuff works! Gus's favorites were the giraffes.
His ABM went well when he wasn't too tired and he did some nice things that are a definite improvement over previously. He's coming up on his hands so much better from both his stomach and while in sitting. That left arm and hand are especially noticeable in their improvement of this function.
He seems to be slowly catching on to the ways he can come up on his knees from his stomach. There's lots more work to do on this but it's so exciting to see him in a position that will lead to crawling!
Special thanks to those who came and visited Maria in the hospital this week while Gus and I were out of town! Very special gratitude to Annette who checked on her every day and stood at the ready to help in any way. We have a lot on our plates with Maria's health and Gus's CP but it's all manageable because of the support of our wonderful friends and family. We couldn't do it without you! Thank you so much for all the thoughts, positive energy, prayers, phone calls, Facebook messages, and gifts of your time this week and always! My team at work are also among our blessings. They are so understanding and accommodating through these situations. We have a lot to be thankful for and we are, indeed, thankful!
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