It's been forever since I've posted- we're plunking along.
Spencer is doing fairly well. His feeding tube was removed last March and after the initial hiccup, he's enjoying his ex-tubie status. He's slowly making progress in feeding himself.
He is getting awesome at using his walker. He walked about half a local mall and back the other day. Today he walked himself in to therapy for the first time rather than getting wheeled in.
He's enjoying being a big brother again. We had our third (and last child) in May. I can't wait until Nathaniel gets a bit bigger and can start interacting with Spencer. Right now Nate kind of just sleeps and eats and Spencer is fairly happy to ignore him.
Our long awaited heart surgery is early next month. For a while there we thought Spencer was going to have to have open heart surgery. His cardiologist has decided that he is pretty confident that he can close his ASD holes in the cath lab. Heart surgery scares me, but I'm ready for this to be over. We've had this surgery hanging over our heads for a long time.
Wednesday, June 24, 2015
Tuesday, April 8, 2014
Wishes
Today one of Spencer's teachers told me another parent said they felt that Spencer got special treatment because of his disability. They went on to say, "I wish my kid was disabled so they could get special treatment too."
No they don't. While I love Spencer and who is he, the worst part is everything he has to go through. Based on that, I would kill to make him typical. I don't dwell on it, but I often think of how he would be different if he didn't have Ohdo Syndrome. What would he say? What would he be eating? Would he know how to read yet? Would he want to play t-ball? How dirty would he get after playing outside? I don't get mopey or depressed about it, but how would our lives be different?
I think why it bothers me so much is because they don't know how hard it is to care for someone with special needs. They only see what's right in front of them, which seems like a happy kid. To get Spencer to the place he is at now has taken years. Years of therapy, nearly 30 surgeries, trial and error, research, worrying, and sleepless nights. They haven't had to hold their kid down so they don't hurt themselves until the pain meds kick in. They haven't had to feed their child every meal for 4 years. Their kid doesn't spend 5 hours a week in therapy. They don't have to drive three hours one way to make sure their child has good healthcare. They don't have to give their kid a bath first thing in the morning so they'll pee and not pee through their diaper at school, because that's how long it take Spencer's bladder to wake up most days. They don't have to deal with the wonderful world of orthotics- their kid can wear whatever shoes they want. They don't have to deal with sensory issues and dealing with the meltdown caused by something as simple as cutting his fingernails. They don't deal with the constant doctor appointments.
Most of all, they can say they wish their child was disabled.
No they don't. While I love Spencer and who is he, the worst part is everything he has to go through. Based on that, I would kill to make him typical. I don't dwell on it, but I often think of how he would be different if he didn't have Ohdo Syndrome. What would he say? What would he be eating? Would he know how to read yet? Would he want to play t-ball? How dirty would he get after playing outside? I don't get mopey or depressed about it, but how would our lives be different?
I think why it bothers me so much is because they don't know how hard it is to care for someone with special needs. They only see what's right in front of them, which seems like a happy kid. To get Spencer to the place he is at now has taken years. Years of therapy, nearly 30 surgeries, trial and error, research, worrying, and sleepless nights. They haven't had to hold their kid down so they don't hurt themselves until the pain meds kick in. They haven't had to feed their child every meal for 4 years. Their kid doesn't spend 5 hours a week in therapy. They don't have to drive three hours one way to make sure their child has good healthcare. They don't have to give their kid a bath first thing in the morning so they'll pee and not pee through their diaper at school, because that's how long it take Spencer's bladder to wake up most days. They don't have to deal with the wonderful world of orthotics- their kid can wear whatever shoes they want. They don't have to deal with sensory issues and dealing with the meltdown caused by something as simple as cutting his fingernails. They don't deal with the constant doctor appointments.
Most of all, they can say they wish their child was disabled.
Thursday, March 20, 2014
I need.
Just a quick update:
After a week of hell, we think Spencer's stoma is trying to close. Stomach acid had been leaking out from around the cath, and burning the skin, causing a hellish amount of pain. They took the cath out yesterday to try some jackass idea involving a colostomy bag. That didn't work and it took surgical a while to come up because of an emergency surgery. During this time, we had an open stoma pouring out gross. Anyhow, after telling them I wanted to transfer hospitals because of the insane amount of pain Spence is in, they decided to call Cincinnati for ideas. They were going to place another feeding tube to allow the skin to heal so we could go ahead and close the hole (which was the most logical plan yet). However, they brought a higher up doctor with them to do it. He decided he couldn't even get a cath in the stoma because it was trying to close! I talked to Jimmy tonight and he said drainage is better and the nurse said things are looking well. Hopefully this works. I need all of us to be under the same roof again. I need Spencer to be able to eat and to be off TPN. I need him out of pain, because seeing him in pain is the worst hell.
After a week of hell, we think Spencer's stoma is trying to close. Stomach acid had been leaking out from around the cath, and burning the skin, causing a hellish amount of pain. They took the cath out yesterday to try some jackass idea involving a colostomy bag. That didn't work and it took surgical a while to come up because of an emergency surgery. During this time, we had an open stoma pouring out gross. Anyhow, after telling them I wanted to transfer hospitals because of the insane amount of pain Spence is in, they decided to call Cincinnati for ideas. They were going to place another feeding tube to allow the skin to heal so we could go ahead and close the hole (which was the most logical plan yet). However, they brought a higher up doctor with them to do it. He decided he couldn't even get a cath in the stoma because it was trying to close! I talked to Jimmy tonight and he said drainage is better and the nurse said things are looking well. Hopefully this works. I need all of us to be under the same roof again. I need Spencer to be able to eat and to be off TPN. I need him out of pain, because seeing him in pain is the worst hell.
Thursday, March 13, 2014
Adventures in ex-tubie land...
Spencer had his feeding tube removed last Thursday, March 6th. His site didn't close by itself and by Saturday morning, the surrounding skin, no matter what we tried, was eaten up by stomach acid. His first pain episodes started that night. His site looked a bit better on Sunday morning, but he started spewing out stomach contents and acid that afternoon. By Monday, we were quite concerned and essentially living a nightmare because of multiple pain episodes. I almost took him to Cincinnati that night, but the GI doctor on call told me that he tried to find someone in surgical who could close his site and couldn't and if I could get him comfortable, to wait and call our regular GI and they will come up with a plan with surgical.
I called and talked to everyone Tuesday morning and told them about the constant pain he was in and that he couldn't keep anything in his stomach and dehydration (because he didn't want to eat and if he did it leaked out) and infection were a concern. Surgery called back and told me to that I could either try pressure dressing (mepilex) or go to our local ER and have them insert a foley catheter in to the stoma. Problem is, the surgery doc in our area is nearly incompetent and hadn't even heard of the AMT brand before we came to her. I told them we had tried every barrier cream and bandage we could and that their plan wasn't good enough and to tell the departments that we were on the way.
So we drove to Cincinnati and went to the ED (emergency department). GI wanted to do pressure dressing or insert another feeding tube. He was just leaking through dressings and we had been trying that all along. I didn't want a gtube placed because they would have had to dilate the stoma. We did agree that we needed to block the hole and he managed to get an 8 French foley in there and admitted him, in hopes surgical could do a fix in the morning.
Surgical came in to consult (at 1:30 in the morning), optimistic they could surgically repair him in the morning. Then came rounds, and they told us there was no way they could get surgical to fix it today (and had no idea why we were told that we potentially could), but they were going to schedule surgery for a later date. However, when we were getting ready for discharge, there was a followup appointment listed. I told the nurse that this wasn't acceptable and we weren't leaving until I knew there was a plan for surgery in place. They sent in GI, who told us they didn't know why surgical wasn't more helpful and would request someone to come in. Surgical sent in this douche bag hot shot resident with an ego from hell who came in looking at the clock and tapping his foot and told me that the surgical doctors from this morning shouldn't have told me that they were going to get surgery scheduled because that's not how things are done. He then told me that they typically don't close stomas unless they've been open for six months or more (bullshit). I told him to leave so he wasn't late for his meeting and called our surgery doctor's nurse, who honestly was the most helpful person during our entire stay. She said she had been on the phone regarding Spencer all morning and that she couldn't depend on any of the idiots to do anything right. She talked me down and told me that Dr Frisher has to see him per protocol next week before surgery is scheduled, but they schedule it while we are at the appointment. She asked who the douchy resident was because he was nuts. She said at most a few weeks. She did everything she could so that we wouldn't have to come back in, but alas the doc was out of town.
On the plus side, Spencer's pain is under control. Yes, he has a cath in his stomach for probably a couple of weeks, but there is a master plan to close this damn thing. I'm an emotional wreck because this is supposed to be a happy time and here we are dealing with this. I've gotten momma bear with far too many people and cried far too many tears (which I don't cry). When did medicine become bureaucratic and about protocol and egos? Anyhow, I'm drinking myself to sleep tonight and hopefully things will calm down for a while.
I called and talked to everyone Tuesday morning and told them about the constant pain he was in and that he couldn't keep anything in his stomach and dehydration (because he didn't want to eat and if he did it leaked out) and infection were a concern. Surgery called back and told me to that I could either try pressure dressing (mepilex) or go to our local ER and have them insert a foley catheter in to the stoma. Problem is, the surgery doc in our area is nearly incompetent and hadn't even heard of the AMT brand before we came to her. I told them we had tried every barrier cream and bandage we could and that their plan wasn't good enough and to tell the departments that we were on the way.
So we drove to Cincinnati and went to the ED (emergency department). GI wanted to do pressure dressing or insert another feeding tube. He was just leaking through dressings and we had been trying that all along. I didn't want a gtube placed because they would have had to dilate the stoma. We did agree that we needed to block the hole and he managed to get an 8 French foley in there and admitted him, in hopes surgical could do a fix in the morning.
Surgical came in to consult (at 1:30 in the morning), optimistic they could surgically repair him in the morning. Then came rounds, and they told us there was no way they could get surgical to fix it today (and had no idea why we were told that we potentially could), but they were going to schedule surgery for a later date. However, when we were getting ready for discharge, there was a followup appointment listed. I told the nurse that this wasn't acceptable and we weren't leaving until I knew there was a plan for surgery in place. They sent in GI, who told us they didn't know why surgical wasn't more helpful and would request someone to come in. Surgical sent in this douche bag hot shot resident with an ego from hell who came in looking at the clock and tapping his foot and told me that the surgical doctors from this morning shouldn't have told me that they were going to get surgery scheduled because that's not how things are done. He then told me that they typically don't close stomas unless they've been open for six months or more (bullshit). I told him to leave so he wasn't late for his meeting and called our surgery doctor's nurse, who honestly was the most helpful person during our entire stay. She said she had been on the phone regarding Spencer all morning and that she couldn't depend on any of the idiots to do anything right. She talked me down and told me that Dr Frisher has to see him per protocol next week before surgery is scheduled, but they schedule it while we are at the appointment. She asked who the douchy resident was because he was nuts. She said at most a few weeks. She did everything she could so that we wouldn't have to come back in, but alas the doc was out of town.
On the plus side, Spencer's pain is under control. Yes, he has a cath in his stomach for probably a couple of weeks, but there is a master plan to close this damn thing. I'm an emotional wreck because this is supposed to be a happy time and here we are dealing with this. I've gotten momma bear with far too many people and cried far too many tears (which I don't cry). When did medicine become bureaucratic and about protocol and egos? Anyhow, I'm drinking myself to sleep tonight and hopefully things will calm down for a while.
Wednesday, March 5, 2014
Graduate.
Before Spencer was born, I didn't know anything about feeding tubes. All of I knew was that old people or people in comas got them. I never imagined that not only would we have a child with a rare genetic syndrome, but he would also require a feeding tube.
After he was born, the main emphasis of his medical conditions was his inability to eat. I went looking for other people for support regarding his tube. We embraced his tube and the "tubie" culture. I became friends with many different people because many of us had a commonality, we had a child with a feeding tube. It didn't matter if they had Mitochondrial Disease or Down's Syndrome, we had a common bond.
As Spencer has learned to eat, we identify him less and less as a tubie. Instead of being his lifeline, it is now just a small reminder. However, we will always be a tubie family. We have gone through this crazy journey, as many others have, and it will always be a part of us.
Tomorrow, Spencer will have his feeding tube removed. He has some type of feeding tube since he was 1 day old. Today, he has had his gtube for 3 years, 10 months, and 12 days. Tomorrow will be day 1 of him living life as a "tubie graduate" and the beginning of his tube being a memory.
Saturday, February 1, 2014
Cardio
The big cardiology appointment is Tuesday. I'm nervous already. I try not to think about big appointments or surgery until the morning of. I can usually block it out of my mind until the doctor sits down or we walk down the hall to the OR. This time I can't. It's his heart. It keeps him alive. His broken heart has kept him alive for this long but we need to repair it. I want to know what the plan is on Tuesday. I don't want to have to do an internal echo or any of that. I want them to tell me that they're going to fix it, when and how, so I can prepare myself. I'm tired of putting it off, but part of me wants to run for the hills.
On the plus side, if there is one to heart surgery, we hopefully will find out if we can pull his tube from this appointment. I'm excited by the prospect of him being tubeless as soon as March. He wouldn't have a 4th "tubiversary."
On the plus side, if there is one to heart surgery, we hopefully will find out if we can pull his tube from this appointment. I'm excited by the prospect of him being tubeless as soon as March. He wouldn't have a 4th "tubiversary."
Tuesday, December 31, 2013
Quick end of the year review
The year started off in us (finally) moving in to our own house. It still is a work in progress, but it's home. We had a lot of fond memories of our past here. Jimmy kissed me for the first time in the kitchen, and I told me he loved me on the front steps. Our kids will grow up here and as a family we'll make a lot great memories of our own.
Quinn Avery was born in March, and is completely typical. She has a great personality and loves to be the center of attention. She's in the process of learning to crawl, and can do so successfully backwards. It took Spencer a long time, but he's finally gotten used to her and seems to enjoy a playmate.
Spencer has come a long way. He is learning to use his wheelchair independently and is still working on walking. He can use a walker, but doesn't like to. He cruises around furniture like crazy and is in everything. He hasn't had any surgery this year. Also, his biggest achievement is becoming independent from his feeding tube. It's looking like in 2014 he will become tube-free. He also started school, which he adores.
Tuesday, September 3, 2013
School
Shortly after Spencer was born, the doctors told us that they didn't know if he was going to live or die. Today was his first day of school. He did amazing. He didn't flip out on me when we were waiting in the hallway with all the other kids, in fact, he waved hi to either a little girl or the fish in the fish tank. He didn't have a meltdown when all the other kids cried, even the kid that was having the king of all meltdowns. He ate his lunch, which was lovingly made just for him, and he ate snack. He did need his Elmo (his comfort toy), twice. He wasn't feeling carpet time, but I think once he gets used to school he will. He loved free time and did great with other kids crowding around him.
The first kid to warm up to him was a little girl named Olivia. She shared with him and they sat next to each other and just played. The kids didn't seem to notice his chair at all and just accepted him for who he is. One did ask why he was so quiet. Out on the playground at recess, a couple kids asked why he had the chair, and I told them that it was because his legs didn't work that great, and that was a good enough answer for them. I like the honesty of small children.
I hope he makes some friends, maybe even a best friend. It would be nice to have kids that aren't related to us come over or him to have a play date. I really hope going to school builds his limited social skills and he really starts coming out of his shell.
Overall, my baby survived his first day of school! He is so proud. I survived too, and I couldn't be prouder of him.
The first kid to warm up to him was a little girl named Olivia. She shared with him and they sat next to each other and just played. The kids didn't seem to notice his chair at all and just accepted him for who he is. One did ask why he was so quiet. Out on the playground at recess, a couple kids asked why he had the chair, and I told them that it was because his legs didn't work that great, and that was a good enough answer for them. I like the honesty of small children.
I hope he makes some friends, maybe even a best friend. It would be nice to have kids that aren't related to us come over or him to have a play date. I really hope going to school builds his limited social skills and he really starts coming out of his shell.
Overall, my baby survived his first day of school! He is so proud. I survived too, and I couldn't be prouder of him.
Tuesday, August 13, 2013
Need
Spencer no longer has oxygen equipment in the house. It has been a long time coming, but his apnea is no longer clinically significant. I balled my eyes out after I hung up the phone. They came to pick up the oxygen equipment a couple weeks ago. I've never been so happy to see something go.
Spencer is still doing awesome eating. He is eating the majority of his meals though out the day. He's also improving significantly with a new sippy cup. We've been giving him a bit of pediasure. I was super hesitant, but if he were typical and still struggling with weight gain, that's what we would end up giving him. I have this weird no pediasure through the tube thing going on though. We are still doing a blended diet for his feeds through his tube. We have accomplished our goal of getting rid of at least one tube feed so he doesn't have to use his tube at school. He will still need a water bolus, but I don't have to send blend with him. He's really doing amazing. There is this light at the end of the tunnel now. Thinking of Spencer without a feeding tube scares, yet excites me.
His Michelle P waiver was finalized! I'm getting paid 13.50 an hour to be his minion. I'm quitting my job at Lowe's. It was time, as Spencer needs me more (and Quinn will only be getting bigger), and if I kept working we would lose his SSI completely. It's our backup plan in case we un-expectantly lost his waiver. We also get 4.75 hours of respite a week. I'm looking forward to getting to spend the weekends with our family. With our nieces and nephews going back to school I won't get to see them during the week as much. Plus my kids can go do stuff that usually only takes place on the weekend, like fairs and such.
Spencer is finishing up his paperwork for preschool. He starts on September 3rd. I'm a nervous wreck. I have this fear that he's going to be on the bus and there will be a sub bus driver and aide and they won't know who he is and he can't tell them. His backpack and his wheelchair both have his name on them now.
Quinn's neuro appointment was this morning. Doc thinks it's nothing, but since her fontanelle is still open, it's easy to do an ultrasound. It's in the morning. She also has a touch of torticollis, which we need to do stretches for. I apparently didn't know that babies have to practice standing up....I thought that was an older infant thing. Spencer didn't even really try until he was over a year old. Quinn is already doing it a lot better after we practiced earlier.
I'm nervous about tomorrow. I have been through hell and back with Spencer. I expect testing and results I didn't want to hear with Spencer. I can handle the unknown with him. It's what we've done for the past 3 years. With Quinn though, it's hard. It was so strange sitting in a doctor's office with kids in wheelchairs and to have Quinn with me rather than Spencer. I kept thinking, "We don't belong here." She has been so normal and typical so far. It would crush my soul if she was diagnosed with something after tomorrow...even if it's something benign. I so desperately need her to be normal and not to worry as much as I worry with Spencer with her. I could have handled her being born with special needs. I can't handle thinking she's a normie and then "bam" she's not. I need this US to come back clean and perfect tomorrow.
Spencer is still doing awesome eating. He is eating the majority of his meals though out the day. He's also improving significantly with a new sippy cup. We've been giving him a bit of pediasure. I was super hesitant, but if he were typical and still struggling with weight gain, that's what we would end up giving him. I have this weird no pediasure through the tube thing going on though. We are still doing a blended diet for his feeds through his tube. We have accomplished our goal of getting rid of at least one tube feed so he doesn't have to use his tube at school. He will still need a water bolus, but I don't have to send blend with him. He's really doing amazing. There is this light at the end of the tunnel now. Thinking of Spencer without a feeding tube scares, yet excites me.
His Michelle P waiver was finalized! I'm getting paid 13.50 an hour to be his minion. I'm quitting my job at Lowe's. It was time, as Spencer needs me more (and Quinn will only be getting bigger), and if I kept working we would lose his SSI completely. It's our backup plan in case we un-expectantly lost his waiver. We also get 4.75 hours of respite a week. I'm looking forward to getting to spend the weekends with our family. With our nieces and nephews going back to school I won't get to see them during the week as much. Plus my kids can go do stuff that usually only takes place on the weekend, like fairs and such.
Spencer is finishing up his paperwork for preschool. He starts on September 3rd. I'm a nervous wreck. I have this fear that he's going to be on the bus and there will be a sub bus driver and aide and they won't know who he is and he can't tell them. His backpack and his wheelchair both have his name on them now.
Quinn's neuro appointment was this morning. Doc thinks it's nothing, but since her fontanelle is still open, it's easy to do an ultrasound. It's in the morning. She also has a touch of torticollis, which we need to do stretches for. I apparently didn't know that babies have to practice standing up....I thought that was an older infant thing. Spencer didn't even really try until he was over a year old. Quinn is already doing it a lot better after we practiced earlier.
I'm nervous about tomorrow. I have been through hell and back with Spencer. I expect testing and results I didn't want to hear with Spencer. I can handle the unknown with him. It's what we've done for the past 3 years. With Quinn though, it's hard. It was so strange sitting in a doctor's office with kids in wheelchairs and to have Quinn with me rather than Spencer. I kept thinking, "We don't belong here." She has been so normal and typical so far. It would crush my soul if she was diagnosed with something after tomorrow...even if it's something benign. I so desperately need her to be normal and not to worry as much as I worry with Spencer with her. I could have handled her being born with special needs. I can't handle thinking she's a normie and then "bam" she's not. I need this US to come back clean and perfect tomorrow.
Sunday, July 21, 2013
An open letter to Dude's teachers
To Spencer’s Future Teachers,
Congratulations! You have the pleasure of teaching my
amazingly awesome, super adorable, and absolutely amazing child. I’m sure you’ve heard a lot about him. His first week of school will be hell, for
all involved, due to all the changes. Don’t
let this deter you. Don’t be afraid of
him. He’s actually freakishly well
behaved and a pretty mellow guy once he gets in a routine. His father and I are also great resources to
help you teach our child, so please utilize us as much as you absolutely need
to, as in the end we both want the same things…for Spencer to be the best
Spencer he can be and for him to love school.
I’m sure you’ve read his IEP and his lengthy list of
diagnoses. The thing to remember about
Say Barber Biesecker Syndrome, or Genitopatellar Syndrome, or any of the other
thirty of so diagnoses Spencer has is that they do not define who he is. Spencer is well behaved, brave, a talented
musician (although I’m a little biased), funny, compassionate, and a great big
brother whether he wants to admit it or not.
He however is not, hypotonia, hearing impairment, cognitive delay, or
arthogryposis.
Sometimes it’s easy to forget that he’s three and a half and
not a baby. Please don’t treat him like
one, because the second you do, he will eat you alive. He knows how to play the game of letting
people underestimate him. Make him do
things he doesn’t want to do. He’ll cry
a bit. He’ll either get over it or have
a complete and utter meltdown, but at least he tried it and we can try it again
or adapt for the next time. The only
way he will grow is if we challenge him.
My biggest fear with Spencer starting school is the other
children. There are safety concerns,
naturally, but I am more concerned about how he may be treated. Don’t let Spencer isolate himself. He’ll try to.
He isn’t a huge fan of other children and will often cry when they
approach him. My biggest hope for school
is that he will get over that and make some friends, and If he is sheltered
from them he won’t. Kids don’t judge at
this age and will hopefully see a buddy, not a wheelchair or a feeding
tube.
My biggest piece of advice?
Don’t panic. I have kept this
child alive for three and a half years with no formal medical training (I
actually have an education degree). You’ll
be fine. Teach him.
Sincerely,
Spencer’s Mom
Thursday, July 4, 2013
I never imagined my life would revolve around poop and pee
So a series of mixed updates.
So Spencer's bladder still sucks...but doesn't suck any worse. He was super backed up with poo, which may be limiting his bladder function as well. We never realized it, but now have him on a pretty strict clean out regime. My theory is while he poops, his body can't get all of it out at once, so he stays chronically backed up. We'll see what GI says when we go back in August. As of now, he's getting a cap full of miralax at night, which seems to be helping a little too much. I might back it up a bit and add some prunes in the morning. It's very much a game that we play with his guts.
Spencer is eating like a champ! He's been eating enough a couple times a day to cut out the feeds. We still have to do water boluses when he mouth eats because he still has a hard time with liquids. Our goal was to get him off one tube feed a day before school started, and we've exceeded that. The new goal is to get him to eat all his meals orally, and supplement calories where needed. Hopefully he starts to do liquids orally and can keep his weight up, and eventually get rid of his tube. It's like there is a light at the end of the tunnel now. It's amazing what progress he's done in just a month. I also suspect he will have to be feeding himself. He loves avocado, which is high in calories and great for him. I am scared about the potential of no longer having his tube. His feeding tube, for so long, was our normal. We still, at minimum, have another year of it, so no fretting yet. It would be awesome to be able to have it out by the time he started first grade.
Dude also graduated from pulmonology! His sleep study came back with no clinically significant findings. As soon as I got word, I took all the oxygen supplies out of his medical cabinet and took it straight to the outside trash can. I'm so excited to be done with it. It has always been hanging over our head. They haven't come to pick up the equipment yet, but I will be quite happy when they do.
Spencer's Michelle P Waiver was also approved. We are waiting for a couple last bits of paperwork and then we can start using it. The first thing I'm getting is solid wheelchair wheels. Spencer got a flat and we've been without for a few days. Hopefully the replacement inner tube comes tomorrow.
Quinn has a giant head. Her head size went from 30th percentile to 94th in two months. Her peds is mildly concerned and wants her to see a neurologist just to make sure everything is ok. Of course I'm a wreck about it and she can't get in to neuro for another month and week. It figures that out of all the specialists Spencer sees, neurology is the one department we do not see so I have no strings I can pull. She's going to see a neurologist down here and if anything needs to be done, I'll transfer her to Cincinnati. We suspect she is fine. She's meeting or exceeding all her milestones and doesn't show signs of hydrocephalus. Giant heads runs in Jimmy's family, and Spencer had a similar head growth spurt around the same age.
So Spencer's bladder still sucks...but doesn't suck any worse. He was super backed up with poo, which may be limiting his bladder function as well. We never realized it, but now have him on a pretty strict clean out regime. My theory is while he poops, his body can't get all of it out at once, so he stays chronically backed up. We'll see what GI says when we go back in August. As of now, he's getting a cap full of miralax at night, which seems to be helping a little too much. I might back it up a bit and add some prunes in the morning. It's very much a game that we play with his guts.
Spencer is eating like a champ! He's been eating enough a couple times a day to cut out the feeds. We still have to do water boluses when he mouth eats because he still has a hard time with liquids. Our goal was to get him off one tube feed a day before school started, and we've exceeded that. The new goal is to get him to eat all his meals orally, and supplement calories where needed. Hopefully he starts to do liquids orally and can keep his weight up, and eventually get rid of his tube. It's like there is a light at the end of the tunnel now. It's amazing what progress he's done in just a month. I also suspect he will have to be feeding himself. He loves avocado, which is high in calories and great for him. I am scared about the potential of no longer having his tube. His feeding tube, for so long, was our normal. We still, at minimum, have another year of it, so no fretting yet. It would be awesome to be able to have it out by the time he started first grade.
Dude also graduated from pulmonology! His sleep study came back with no clinically significant findings. As soon as I got word, I took all the oxygen supplies out of his medical cabinet and took it straight to the outside trash can. I'm so excited to be done with it. It has always been hanging over our head. They haven't come to pick up the equipment yet, but I will be quite happy when they do.
Spencer's Michelle P Waiver was also approved. We are waiting for a couple last bits of paperwork and then we can start using it. The first thing I'm getting is solid wheelchair wheels. Spencer got a flat and we've been without for a few days. Hopefully the replacement inner tube comes tomorrow.
Quinn has a giant head. Her head size went from 30th percentile to 94th in two months. Her peds is mildly concerned and wants her to see a neurologist just to make sure everything is ok. Of course I'm a wreck about it and she can't get in to neuro for another month and week. It figures that out of all the specialists Spencer sees, neurology is the one department we do not see so I have no strings I can pull. She's going to see a neurologist down here and if anything needs to be done, I'll transfer her to Cincinnati. We suspect she is fine. She's meeting or exceeding all her milestones and doesn't show signs of hydrocephalus. Giant heads runs in Jimmy's family, and Spencer had a similar head growth spurt around the same age.
Saturday, June 15, 2013
Nervous.
Tomorrow we head back to Cincinnati for Spencer's Urodynamics study. I'm a nervous wreck about all of it. It's a hard test for anyone to go through, but even more so for a child. Essentially they are going to fill his bladder with saline to measure the pressure inside. Then after that hot mess he has to have a renal ultrasound. Then they will try to get him to pee on xray. It's a fairly miserable experience for all involved. Jimmy is going to take the ultrasound, since I absolutely hate doing them. I hate doing all of it, but I hate having to position him and try to get him to relax. I'll take the other two tests. Luckily, we won't have to wait long for the results because his urology appointment is at 2 on the same day. Worst case scenario he has kidney damage and we have to start cathing him.
Dr. Hopkin gave us some hope. Spencer's bladder issues were caused by some nerve damage to his spinal cord. There is a small chance that some of the cells may regenerate and could help bladder function. I'm going to pick Dr. Alam's (his urologists) brain while we are in clinic about this. The last thing I want to do is start cathing Spencer. Usually once you start, you always have to do it. He is 3 and would have to have this done for the rest of his life. His prognosis is good, so cathing would be something he would still have to do as an adult.
Dr. Hopkin gave us some hope. Spencer's bladder issues were caused by some nerve damage to his spinal cord. There is a small chance that some of the cells may regenerate and could help bladder function. I'm going to pick Dr. Alam's (his urologists) brain while we are in clinic about this. The last thing I want to do is start cathing Spencer. Usually once you start, you always have to do it. He is 3 and would have to have this done for the rest of his life. His prognosis is good, so cathing would be something he would still have to do as an adult.
Friday, June 14, 2013
Screw it, we're just calling it Spencer Syndrome
Just got back from an overnight stay in Cincinnati. Spencer had some labs drawn, a ortho followup, a visit with Trauma Services, a sleep study, and a genetics follow up. It's been an exhausting couple of days and we get to go back Sunday to do more testing and appointments. Joy.
Let's start at the beginning....Spencer had his tests done for school....Hemoglobin and Lead....His hemoglobin is 15.3 and his Hematocrit is 43.7. Both are high, but if I remember right it's common with kids with heart or airway problems. I'll ask his pulmonary doc when we are there in a couple weeks. He also had his lead level tested which was super low, something I've been super paranoid about since moving into our ancient house. He also had a renal profile and blood gas done, which both look pretty good as well.
Then came the Trauma Services appointment. Basically we were there discussing whether or not Spencer needs a special needs car seat since he's outgrowing his current one. He does not and we scored a free new combination booster seat.
Then we went to see Dr. Tamai, his foot orthopedic doc, for a club foot followup. There was a kid there at the same time we were that was named Nicholas Spencer, which gave us all a good laugh. Anyhow, his feet look great and everything fits pretty good. We did discuss a potential foot surgery in the next year or two, if his right ankle doesn't straighten up. Either we would release a tendon or put a pin in the growth plate. We'll cross that bridge when we get to it.
Sleep study blew. First we had to wait forever for his first dose of Chloral Hydrate to show up. I wouldn't let them touch him until he went to sleep. He woke up at some point during the hookup and went in to sensory meltdown. I requested the second dose of medicine, which you would think they would have sent up to the floor already considering it was such a pain in the ass to get the first one. That took another hour. You could just see the RTs getting antsy because of time. It took me forever to calm him down and I finally did shortly before the medicine came in. I was about to cut someone's throat. Anyhow, got him back asleep and hooked up finally about 11. He slept most of the night and only woke up to grump a few times. We should have the results in a couple of weeks. If this went well, it should be our last one and we can get rid of the oxygen equipment in the house.
Finally, genetics. We "graduated" to once a year appointments today. We discussed Spencer's gene mutation on Chromosome 10q22KAT6B. There is another syndrome that shares some of the gene mutations with Ohdo syndrome, called Genitopatellar syndrome. Spencer shows characteristics of both syndrome and could very well have both or something that combines the two. The researched in the UK has seen several people with an overlap. Our geneticists at Cincinnati are going back again and looking at his lab results from the Ohdo testing to see what they can find. Spencer essentially is the poster child for both syndromes. It will be interesting to see how this turns out. I've decided if he has something they've decided new entirely, I'm demanding it be named after him.
Let's start at the beginning....Spencer had his tests done for school....Hemoglobin and Lead....His hemoglobin is 15.3 and his Hematocrit is 43.7. Both are high, but if I remember right it's common with kids with heart or airway problems. I'll ask his pulmonary doc when we are there in a couple weeks. He also had his lead level tested which was super low, something I've been super paranoid about since moving into our ancient house. He also had a renal profile and blood gas done, which both look pretty good as well.
Then came the Trauma Services appointment. Basically we were there discussing whether or not Spencer needs a special needs car seat since he's outgrowing his current one. He does not and we scored a free new combination booster seat.
Then we went to see Dr. Tamai, his foot orthopedic doc, for a club foot followup. There was a kid there at the same time we were that was named Nicholas Spencer, which gave us all a good laugh. Anyhow, his feet look great and everything fits pretty good. We did discuss a potential foot surgery in the next year or two, if his right ankle doesn't straighten up. Either we would release a tendon or put a pin in the growth plate. We'll cross that bridge when we get to it.
Sleep study blew. First we had to wait forever for his first dose of Chloral Hydrate to show up. I wouldn't let them touch him until he went to sleep. He woke up at some point during the hookup and went in to sensory meltdown. I requested the second dose of medicine, which you would think they would have sent up to the floor already considering it was such a pain in the ass to get the first one. That took another hour. You could just see the RTs getting antsy because of time. It took me forever to calm him down and I finally did shortly before the medicine came in. I was about to cut someone's throat. Anyhow, got him back asleep and hooked up finally about 11. He slept most of the night and only woke up to grump a few times. We should have the results in a couple of weeks. If this went well, it should be our last one and we can get rid of the oxygen equipment in the house.
Finally, genetics. We "graduated" to once a year appointments today. We discussed Spencer's gene mutation on Chromosome 10q22KAT6B. There is another syndrome that shares some of the gene mutations with Ohdo syndrome, called Genitopatellar syndrome. Spencer shows characteristics of both syndrome and could very well have both or something that combines the two. The researched in the UK has seen several people with an overlap. Our geneticists at Cincinnati are going back again and looking at his lab results from the Ohdo testing to see what they can find. Spencer essentially is the poster child for both syndromes. It will be interesting to see how this turns out. I've decided if he has something they've decided new entirely, I'm demanding it be named after him.
Saturday, June 8, 2013
Struggling.
Spencer has been home from the NICU for three years. As his gift, we bought him a small helicopter, that he loves. We plan on going to the pound later in the month, after our Cincinnati appointments coming up, and let him pick out a pet if he chooses.
I've been really struggling with Spencer's disabilities lately. The hardest one is that he can't talk, and he likely will always struggle to use speech. I would kill to hear him ask me a question, or tell me how he's feeling. I know he'll talk...whether it be with a device or not, but he should be talking my ear off now and it's hard that he's not. It's hard that he doesn't have a voice.
Quinn is doing awesome. Spencer's even starting to warm up to her and steals her toys on occasion. She is just starting to lift her head up during belly time (which she hasn't had a ton of). She's "talking" up a storm. Jimmy started cooing, and Quinn did it back. They took turns in doing it for a while and even Spencer did it once or twice.
He is doing awesome with his eating. He still doesn't know quite what to do with ground beef yet. He loved soft tacos, but struggled to get the meat down too. He sloshes the soft taco shell in his mouth. Next time I'm going to do hard shell ones and that should help him chew. He ate over half a pita pizza pocket the other day. He'll be ready for a happy meal in no time.
I've been really struggling with Spencer's disabilities lately. The hardest one is that he can't talk, and he likely will always struggle to use speech. I would kill to hear him ask me a question, or tell me how he's feeling. I know he'll talk...whether it be with a device or not, but he should be talking my ear off now and it's hard that he's not. It's hard that he doesn't have a voice.
Quinn is doing awesome. Spencer's even starting to warm up to her and steals her toys on occasion. She is just starting to lift her head up during belly time (which she hasn't had a ton of). She's "talking" up a storm. Jimmy started cooing, and Quinn did it back. They took turns in doing it for a while and even Spencer did it once or twice.
He is doing awesome with his eating. He still doesn't know quite what to do with ground beef yet. He loved soft tacos, but struggled to get the meat down too. He sloshes the soft taco shell in his mouth. Next time I'm going to do hard shell ones and that should help him chew. He ate over half a pita pizza pocket the other day. He'll be ready for a happy meal in no time.
Tuesday, May 7, 2013
Clean Plate
So Jimmy and I decided last night that we would just start sitting
Spencer down with a plate of food and see what he would do. Tonight, I
made Dude and I plates and we sat down and had dinner together. I fed
him to avoid a huge mess. He let me feed him with a baby spork,
something he hasn't let me do in forever. He ate everything on his
plate. EVERYTHING. He has never cleaned a plate before...ever. He
loved baked potato. He ate chicken with BBQ sauce, asparagus tips, and
carrots too! Of course his servings were probably 1/3 of a kid his age
normally would get, but still, this is huge!
Monday, April 29, 2013
Bittersweet
Spencer at nearly a half of a peanut butter sandwich today. We then had a clogged tubie after I did his tube feed, which thankfully I got unclogged in a last ditch effort before I changed his tube. Never a dull moment.
Spencer has been incredibly vocal lately. He said his I love you to me again last night. He has also been saying no a lot, which is getting a lot clearer. He is responding to me more when I talk to him. There are still times where he just ignores me too:)
He still isn't a huge fan of Quinn. I occasionally catch him smiling at her, and then stops when he sees me smiling at him. Quinn started smiling about two weeks ago. Today Jimmy said she gave him a big old "spencer" smile. I can't wait until she starts giggling.
She grasped onto a rattle today. I started crying. Spencer didn't grasp onto a rattle until at least six months. When he was her age, his hands were still in splints a huge chunk of the day. It's bittersweet. I'm excited by all the cool stuff Quinn is doing, but yet saddened that Spencer had to fight so hard to be able to do the same things.
Spencer has been incredibly vocal lately. He said his I love you to me again last night. He has also been saying no a lot, which is getting a lot clearer. He is responding to me more when I talk to him. There are still times where he just ignores me too:)
He still isn't a huge fan of Quinn. I occasionally catch him smiling at her, and then stops when he sees me smiling at him. Quinn started smiling about two weeks ago. Today Jimmy said she gave him a big old "spencer" smile. I can't wait until she starts giggling.
She grasped onto a rattle today. I started crying. Spencer didn't grasp onto a rattle until at least six months. When he was her age, his hands were still in splints a huge chunk of the day. It's bittersweet. I'm excited by all the cool stuff Quinn is doing, but yet saddened that Spencer had to fight so hard to be able to do the same things.
Wednesday, March 13, 2013
Quinn
Quinn Avery was born on Friday, March 1st at 7:25pm. She weighed 6 pounds, 11 ounces and was 19 inches long. She threw a fit when she was born...I guess she was comfortable. As far as we know, Quinn is a "normie." She shows absolutely no signs of any genetic disorder, Ohdo Syndrome included. The only thing she has is possiblysome tolerance issues with formula (we are poorly attempting breast feeding as well), so there may be some reflux going on, but no where near as bad as Spencer's was. She also has a scaral dimple, but we don't suspect spine issues. Normal is scary. I'm still very much on my toes, looking for things. My paranoia is also in full force and I'm freaking out about stupid stuff that we've proved isn't in the house, such as lead paint. It's all probably tied to post par tum stuff, but it isn't all consuming. At this point I'm just concerned about if breast feeding is going to work. I'm pumping and we are supplementing with formula. I'm just about ready to throw in the towel. I figure we'll find a formula she tolerates well and then I can back off if my milk supply doesn't beef up. I'm kind of bummed, but if she needs formula, she needs formula.
Spencer isn't a fan of Quinn yet. Every time she cries he throws a fit. They've tagged teamed me in the car several times now. All I can do is laugh at them because Spencer is so over the top. He'll get used to her, in time. He is warming up a little bit...he'll at least come some where near her now. Quinn lost her umbilical cord yesterday, so today I opened up her play mat. She fell asleep before she got to play with it, but Spencer had an absolute blast. I think some of the toys from it went to bed with him.
She had her first bath today. It's strange not having to carry an oxygen tank or move tubes to carry her or give her a bath. She did such a good job. She didn't cry at all. Afterwards, I wrapped her up in a towel and she fell asleep.
Spencer isn't a fan of Quinn yet. Every time she cries he throws a fit. They've tagged teamed me in the car several times now. All I can do is laugh at them because Spencer is so over the top. He'll get used to her, in time. He is warming up a little bit...he'll at least come some where near her now. Quinn lost her umbilical cord yesterday, so today I opened up her play mat. She fell asleep before she got to play with it, but Spencer had an absolute blast. I think some of the toys from it went to bed with him.
She had her first bath today. It's strange not having to carry an oxygen tank or move tubes to carry her or give her a bath. She did such a good job. She didn't cry at all. Afterwards, I wrapped her up in a towel and she fell asleep.
Wednesday, January 23, 2013
Today
Today in a nutshell:
Met with our new pulmnologist today. I really like him. He is one of the sleep center minions, which is exactly what we needed on our team. Spencer has been having huge issues with sleep lately, and the new doc assured me that we were doing everything by the book. He is consulting with endocrinology to see if Spence can have melatonin, if not we may be doing Ambien. I hate the idea of medicating him, but at this point Spencer and I are both miserable. He also wants Spencer to do a pulse ox test. If he holds his own, which he has passed this test in the past, no more sleep studies and we can get the god forsaken oxygen equipment out of the house!
We then had a renal ultrasound. Spencer was a nightmare during the test, although Elmo on TV seemed to help him calm down a tad. The good news is that the peliminary came back clean. No damange to the kidneys. Dr. Alam may have something different to say, but so far I'm pretty pleased with the results.
We then met with Dr. Tamai. Spencer has been having a few issues with his left leg bowing and the foot trying to turn in a bit. We have to do exercises with him to keep it from tightening up. Sometimes after spinal surgery kids start to get tight in the tendon. If he gets too tight we will have to do another tentonomy and re cast...which would majorly blow. But so far he is pretty optimistic.
Our last appointment was with allergy. We are allowed to try to start doing some eggs in bake goods and see how he processes it.
I forgot to mention, on the 9th Spencer said I love you for the first time:) Of course it was all in Spencer-ese, but he said 3 distinct words right after I said I love you.
Met with our new pulmnologist today. I really like him. He is one of the sleep center minions, which is exactly what we needed on our team. Spencer has been having huge issues with sleep lately, and the new doc assured me that we were doing everything by the book. He is consulting with endocrinology to see if Spence can have melatonin, if not we may be doing Ambien. I hate the idea of medicating him, but at this point Spencer and I are both miserable. He also wants Spencer to do a pulse ox test. If he holds his own, which he has passed this test in the past, no more sleep studies and we can get the god forsaken oxygen equipment out of the house!
We then had a renal ultrasound. Spencer was a nightmare during the test, although Elmo on TV seemed to help him calm down a tad. The good news is that the peliminary came back clean. No damange to the kidneys. Dr. Alam may have something different to say, but so far I'm pretty pleased with the results.
We then met with Dr. Tamai. Spencer has been having a few issues with his left leg bowing and the foot trying to turn in a bit. We have to do exercises with him to keep it from tightening up. Sometimes after spinal surgery kids start to get tight in the tendon. If he gets too tight we will have to do another tentonomy and re cast...which would majorly blow. But so far he is pretty optimistic.
Our last appointment was with allergy. We are allowed to try to start doing some eggs in bake goods and see how he processes it.
I forgot to mention, on the 9th Spencer said I love you for the first time:) Of course it was all in Spencer-ese, but he said 3 distinct words right after I said I love you.
Friday, December 28, 2012
Ghosts
When Spencer was in the NICU, I coped quite well. I had a hard time right after he was born, which is expected I suppose. I didn't want him to suffer...to live a life where he would be mocked and made to feel less valuable in a society where people with disabilities aren't seen as humans by the so-called norm of society. Back then, I didn't know the gifts that he would bring to the world. It took me a good two weeks to stop putting on a brave face and to take things head on.
Jimmy slowly retreated in himself. It happens. He still can't explain how he felt or why, but he was the poster child of someone suffering from severe post traumatic stress disorder. It's no secret that we separated for a while, mainly because how each of us handled Spencer's birth. To me, he became someone else entirely. To him, my need to feel in control consumed our lives and obliterated his freedoms.
While the NICU days creep up and haunt me every once in a while, I've handled it all pretty well. I've never felt consumed by it, until now. I'm going to have another baby in 9 weeks, and I'm currently consumed in the thoughts that I've now given her birth defects because I used goo off on the kitchen floor liberally, or I was in the house while Jimmy was polyurethaning the floors or using mineral spirits. I'm so anxious and worried that I've done something to her. I'm fairly intelligent...I realize that the level of exposure I've had contains very small risks. When I have done anything in the house, or even when Jimmy has, I've been well ventilated and haven't felt the effects of any fumes. Even the OBGYN tells me I'm fine. This all started when I had to wipe my hands off with paint thinner because I couldn't get something oil based off them. Dumb, I know, but it didn't occur to me as dangerous until I still smelt it on my hands after washing them with soap.
It's all I've thought about all day. It's not even the thought of having another child with Special Needs that bothers me...we can handle that. It's me doing something that could cause her to have problems. I can't shake this, and I'm worried the anxiety is going to keep on getting worse and worse.
Jimmy slowly retreated in himself. It happens. He still can't explain how he felt or why, but he was the poster child of someone suffering from severe post traumatic stress disorder. It's no secret that we separated for a while, mainly because how each of us handled Spencer's birth. To me, he became someone else entirely. To him, my need to feel in control consumed our lives and obliterated his freedoms.
While the NICU days creep up and haunt me every once in a while, I've handled it all pretty well. I've never felt consumed by it, until now. I'm going to have another baby in 9 weeks, and I'm currently consumed in the thoughts that I've now given her birth defects because I used goo off on the kitchen floor liberally, or I was in the house while Jimmy was polyurethaning the floors or using mineral spirits. I'm so anxious and worried that I've done something to her. I'm fairly intelligent...I realize that the level of exposure I've had contains very small risks. When I have done anything in the house, or even when Jimmy has, I've been well ventilated and haven't felt the effects of any fumes. Even the OBGYN tells me I'm fine. This all started when I had to wipe my hands off with paint thinner because I couldn't get something oil based off them. Dumb, I know, but it didn't occur to me as dangerous until I still smelt it on my hands after washing them with soap.
It's all I've thought about all day. It's not even the thought of having another child with Special Needs that bothers me...we can handle that. It's me doing something that could cause her to have problems. I can't shake this, and I'm worried the anxiety is going to keep on getting worse and worse.
Tuesday, December 25, 2012
Hoho
Santa came! Well, that's what Spencer thinks....we think. I've been talking up Santa and Christmas to him for a while now. We sat on Santa's lap, asked him for a Ipad and a Little People Carnival Train. I got the customary wake up from the youngest nephew (he was quite excited this morning), and told Spencer it was time to wake up because Santa came. Spencer was pretty much up right away and ready to go. He eyed the Christmas tree as we waited for everyone to get up and watched Killian try to break into presents.
Jimmy and I vowed that Spencer would open the majority of his presents by himself this year. I had to help him a bit and redirect him a few times, but he was totally into opening his presents. He was so excited about the Carnival Train. All the clothes he got was in bags. He let me remove the tissue paper (I guess he didn't like how it felt), and looked inside. Once he confirmed they were clothes, he immediately lost interest and went back to his toys. He made out fairly well this year and had a great morning.
On the downside, everyone is starting to feel lousy. It started with my niece and now my newphew and FIL are coughing. Hopefully it skips us!
Jimmy and I vowed that Spencer would open the majority of his presents by himself this year. I had to help him a bit and redirect him a few times, but he was totally into opening his presents. He was so excited about the Carnival Train. All the clothes he got was in bags. He let me remove the tissue paper (I guess he didn't like how it felt), and looked inside. Once he confirmed they were clothes, he immediately lost interest and went back to his toys. He made out fairly well this year and had a great morning.
On the downside, everyone is starting to feel lousy. It started with my niece and now my newphew and FIL are coughing. Hopefully it skips us!
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