Archive for the ‘PVL’ Category

Several tidbits of update

December 8, 2011 Leave a comment

Kid 5 had a check up with the orthopedic doctor today. He had an x-ray of his hips and it came back pretty close to normal. There’s a little bit if turning on the growth plates but nothing to worry about, especially since we have him in braces and such. We’re to return in a year.

We visited the in laws today. Kid 5 spent a long time with his abuelo. He did really well with being held by him. I was surprised. It probably helped that his grandpa turned on Dora for him, but he sat there and made an old man’s day.

Apparently, sister in law is getting married in January. She is sending out invitations for an engagement party and they’re getting married there. It’s supposed to be a surprise and we’re not supposed to know but mother in law told us anyway to make sure that hubby takes the day off and doesn’t blow off what he thinks is an engagement party. I think a lot of people are going to end up doing that, actually… but whatever.

When we got home, I rearranged the two downstairs “bedrooms” and swapped them out, so the old toy room is now a room with a table in it for sewing. The old guest room that gradually became known as the wii room is now a toy room for the little ones with a ton of space. I was even able to get the parallel bars and table and chair out of my dining room. Oh, and the rocking cow. All of their crap fits into that room comfortably and there’s still room for a bed when we’re ready to separate Kid 4 and Kid 5. We also have a more spacious place to do weekly therapy for Kid 5 so that’s exciting. We’ve been doing it in the dining room and there just hasn’t been any space to work.

We also went to Kid 1’s very first high school choir concert today. I am so proud of her. She looked so pretty in her choir robe that it made this mama melt, and she did a great job singing, as well. The little ones behaved fairly well and Kid 5 didn’t scream through the band part of the performance this time, either. It also made me beam with pride over my husband, the wonderful stepfather that he is, sitting in the front row of the gym, tapping his foot to the music. The ex that chose to abandon his kids and move to Arkansas can go ahead and try to pretend like he’s a dad in conversations with others all he wants, but Kid 1 knows who her dad is, and he isn’t it.

I’m almost done with a quilt for mother in law for Christmas, which I’m going to try to finish tonight, and then I’m going to have a glass of wine and relax with my wonderful husband.

Be careful what you wish for.

November 27, 2011 Leave a comment

I write this blog, not as a complaint, but as a possible wake-up call. I’m quite content with my little man and my grief is steadily turning into acceptance over his condition, but if I had control over it, obviously, I would want him to be healthy and disability-free.

A friend’s relative is rather pregnant. She is 34 weeks at the most, with 40 weeks in a full pregnancy. There is some question of her dates, and she has a health problem that will add weight to the baby anyway, so it’s probable that the child is closer to 32 weeks along. As I said, she has a health problem outside of pregnancy and she has been using that in an attempt to try to make her doctors induce. Her doctors won’t, because there isn’t truly anything wrong. I’m sure she has this idea that the baby will come out and everything will be fine and they’ll go home but she won’t have to be pregnant anymore. Anyone that’s ever been pregnant into the third trimester has had thoughts of how they wish their due date would hurry up because they’re miserable. I think that’s natural. Some people take it to the extreme.

I can only speak from my own experience, and I want to again make it clear that I am not coming from a place of sadness anymore, but some of the things I have gone through and my son has gone through have been very painful, physically for him and emotionally for me. It took a long time to get to a place of acceptance and I still falter. But this is what you risk if you have a baby before that baby is ready to come out:

My water broke at 32 weeks 2 days. I was already at risk of preterm labor due to past pregnancies, and I had pneumonia (possibly Swine Flu but I was never tested) that I believe caused me to break my water. If you knew how bad I was coughing, it would make sense to you, too. I probably should have been in the hospital for that, anyway, but I wasn’t. The antibiotics only did so much and I guess it just didn’t clear up in time. I spent the next 6 days on hospital bedrest, away from my other children, tired because the nurses wouldn’t leave me alone, hot because the ventilation in my room sucked, and feeling icky because I wasn’t allowed to shower but maybe twice. In that time, I was given steroid injections to help develop the baby’s lungs. Even with those, the neonatologist didn’t expect him to breathe room air.

After as natural of a labor as you can get in those circumstances, my son was born at 33 weeks 1 day, weighing 4 pounds 1 ounce and having a length of 16 inches. His apgars were 9 and 10. Seemed pretty positive to me! I figured we’d get him home in a few days, once he put on a little more weight and showed the doctors that he was fine. It was hard to leave him behind in the hospital at first, but surely I could handle a few days.

Wrong. A few days turned into 6 weeks. He took until the very end to get the hang of eating. He had a bout of jaundice. He  had a few vitamin deficiencies. He had to be able to control his body temperature.

Here’s what my typical day looked like for 6 weeks.

At 9:00, I would get up and have breakfast while talking to a nurse on the phone about my son. I’d pump milk for my son. I’d take care of my daughter. I’d wait for my husband to get up. At 11:00, when he was finally up and ready to go, we’d leave the house. We’d drive a half hour to drop our daughter off at one of her grandmas’ houses, then go to the hospital. We’d stop in the cafeteria and eat. We ate a lot of soup because it was cheap and gas wasn’t. I’d spend 3 hours with my son, part of that time pumping milk in the lactation room or at his bedside. Then I’d go get my daughter and race home so I could meet the older kids when they got out of school. I’d pump. Then I’d help with homework, do bathtime, make dinner, and all of the things that a mom would do. I’d pump again. I’d lay down and nap for an hour. Then I’d load up my daughter, because my oldest was old enough to be home alone with two sleeping siblings close to her age but not a one year old. I’d haul her and my milk to the hospital, where my husband also happened to work, and I’d hand the nightly milk off to him. He’d run it upstairs to the NICU, come back, and we’d go home. I’d pump. I’d lay down and sleep for 3 hours. Then I’d wake up and pump. Then I’d wake up at 9:00 and start all over.

In no way did I have it the hardest and in no way did my baby have it the hardest. Out of the 6 babies in our “pod”, he was born the latest and he was the healthiest. For that, I am grateful. I have since attended the funeral of one of the other babies, when he would have been 20 months old. He died due to complications of HLHS (a congenital heart defect). His mother had ten times the fight I did on a daily basis, and the little guy that passed on was a twin so she had another preemie on top of it.

At any rate, after 6 grueling weeks, we got to go home. Most things were normal from that point. The only thing out of the ordinary was how clingy my son was to me. I had a clingy baby or two before him but he didn’t want any part of anyone, not even his father, for seven months. I don’t mean just not being able to hold him, either. He wouldn’t even let him sit next to him. There was no putting him down, ever, unless I bundled him in a snowsuit and tricked him.

Outside of that, everything was okay for a while. He was even ahead physically for a little while. Then it started to taper off. At first, it was his prematurity that got blamed, but when he still wasn’t sitting up at 11 months old, I called the NICU follow up clinic to ask for help. She referred us to early intervention and we started therapy.

He has also since had an MRI ordered through a neurologist and he was diagnosed with periventricular leukomalacia (PVL for short) which is the leading cause of cerebral palsy, and thankfully that is the only complication of the disorder that we have experienced, except for a possible connection to his ‘lazy eye’.

Here is a list of doctors/professionals we see regularly:
Of course there’s the pediatrician
orthopedic doctor
ENT (though we haven’t been back to this one since his adenoids were removed)
physical therapist
developmental therapist
occupational therapist
vision therapist
We have a speech therapist on our team for consults but haven’t needed her yet.
We also see an orthotist every few months to have him fitted for various orthopedic appliances

Currently, he’s on baclofen as a muscle relaxer and that has to be given three times a day, orally. He gets botox injections in the backs of his legs every three months. He wears glasses. He wears articulating AFO’s to help position his legs and feet better. He wears derotation straps that pull his toes out, to keep him from being pigeon-toed. He has a walker. He gets Kinesio tape put on his back every two weeks, and he wears it for 4 days at a time. He also has special orthopedic shoes, simply because it is so very hard to find shoes on the first try that work with his AFO’s, so we cut to the chase and got him shoes we knew would work.

Let me stop and tell you what it’s like to get him geared up in the morning. First, we have to get him bathed, dressed, what have you. Then we have to find him socks. Laundry has never been my strong suit. So once we find socks, those obviously go on his feet. Then he wears little leg warmers over those because the socks aren’t long enough to go up the length of the AFO. Then the AFO’s go on. Then they come off because I realize I put them on the wrong feet, and I try again. Then the shoes. Then they get tied and double knotted. Then he tells me “I want my belt on,” which is good because he’d get it anyway. I take the derotation straps, attach the belt part to his waist with the velcro, and straighten it out. Then I wrap it three times around and down his left leg, and snap it to his shoe. Then I wrap the other one three times around and down his right leg, and snap that to his other shoe. Now he won’t step on his own toes. Then I put glasses on him, and we’re finally ready to continue with our day.

My dining room that once held baby gear now has pint-sized parallel bars, a bench for sitting, the walker, and sometimes something they call a peanut ball, or a wedge for sitting.

When I go to the store, I can’t just put him in the front of the cart. His shoes are too large and he can’t wiggle his ankles enough to get them through the holes. Even if we get him in, getting him out is even worse. So, as if a two and three year old in the store isn’t hard enough, I have to try to juggle him into the back of the cart and then his sister sits in the front. The people that work at the Kmart nearest to me are always so kind as to give me a look and then play the recording saying how dangerous it is to put your child in the back of the cart. I’m aware of that. There’s not much else I can do except leave him at home and that’s not an option either, so if you want my money, trust that I won’t sue you if I tip the cart over, and stop playing passive-aggressive recordings.

On Halloween, he couldn’t go to doors with his sisters. He had to wait at the bottom of the steps in his stroller and even miss out on some candy because the steps started too far away from the front door.

Despite research stating that rearfacing carseats for as long as possible is best, he can’t. When he’s in his gear, his legs simply won’t work in that position. It’s not a matter of hanging them over the sides of the seats or crossing them. We do what we have to do, but I know better and still can’t do better, and it bothers me.

I’ve been opened up to a new world of narrow entrances that I worry he won’t fit through someday, the realization that I can’t be there to help him forever, and I don’t even know how much longer I can lift him. Luckily he’s tall and lanky and not a chunky fella or I don’t know what I’d do. These things weigh on my mind, though, because I want him to succeed in life but when you can’t walk and your hands don’t work right, it slows you down.

Do I feel he will walk someday? Yes. Will it be before he does damage to my back? Probably not.

In a few months, he will start preschool. He has always relied on me, from the time he came home from the hospital. Very seldom is he without me. Soon, he will be navigating a school, by himself, despite not being able to use a spoon properly or push a button. This scares the hell out of me.

His adulthood and the uncertainty of what he will face scares me even more. I’m fairly young and in good health now, but we won’t live forever. I am so, so lucky that he is mentally “normal” because at least he will be able to live in society, at least with modifications, but I wonder sometimes about when he gets old. Will this shorten his lifespan because he’s already as stiff as some 70 year olds? Will he be okay? I simply don’t know. I’m just a worried mom that loves her baby.

So now that you’ve read this, if you’re planning to try for early induction via home remedies, first of all, know that most won’t work until the baby is ready to come anyway. However, for the methods that could work, be prepared to possibly accept this as your fate.

Do I love my son any less or think he’s any less amazing because of what he has? No, of course not, but everyday I wish I could go back in time to change this for him. It’s not that I don’t love him as he is and accept his disorder as a part of him, but I’m not the one that has to live in his body. I’m not the one that has to struggle to turn on a light or flush a toilet. He does. Any parent worth their salt would want their child’s life to be as easy as possible. I’m no different.

I’m sure you’re not either. So please keep this in mind. Yes, that child is within your body and it’s your choice to want the child out but your choice affects this human being for the rest of his or her life. Even if it’s something as simple as asthma because of underdeveloped lungs, it’s something that doesn’t have to happen. Pregnancy can be hard and it seems like it lasts forever at times, but in the end, it’s only 40 weeks or so. You can make it. I have teenagers. Trust me. Being pregnant is by far easier than the discomfort a teenage girl causes when she has pms and you won’t let her stay the night at her friend’s house. Tough it out a little longer, for the sake of the child within you that you love.

And if nothing else, remember how I left my baby in the hospital for 6 weeks. If you cause your child to come early on purpose and they spend that time in the hospital instead of below your heart, what’s the point? You don’t get to enjoy that baby. You have to ask permission to touch it. To feed it. To clothe it. To change its diaper.

Or, you could just be pregnant and miserable a few more weeks, and you could have your baby and enjoy him or her from the start.



Categories: PVL

September 12, 2011 1 comment

We had our annual qualification meeting with Early Intervention Friday. Perrin regularly sees a physical therapist, a developmental therapist, and an occupational therapist. In addition, he had an evaluation with a vision specialist in the developmental therapy field, and a speech therapist. He will he seeing the vision specialist from now on, most likely once a month. The other therapist rated his speech at about a 27-30 month range. Since his adjusted age is 22 months, this is awesome. Not only does he understand everything we say (meaning he’s in there) but he can communicate with us.

I have learned as I’ve traveled down this special road that when you brag about a success that puts that ability in the normal range, someone out there would still trade places for a moment. It’s not that they wish your child didn’t succeed. They just wish theirs did. I’ve been there. I get it. Please don’t take my amazement at my son’s success as anything meant to be hurtful. I’ve felt it too, when your child can’t talk but can run. I want him or her to talk, too. I just want my son to be able to run across a room. We’ll get there. We all will. It’s just a confusing journey.

At any rate, he did excellent with the speech evaluation. I didn’t realize just how amazing he’s doing. It’s easy to forget sometimes. Even with a swollen tongue from having his adenoids out, he amazed her. So score one for Perrin! It’s nice to have something go right for a change. Every time I turn around, something else is “wrong” and he needs another therapist for it.

As for the other therapies, we’re still going forward with them. He still qualifies for everything because he has enough of a delay. The minimum is 30 percent, although they can pull strings if he falls under that since he has an official diagnosis. Still, there’s a catch 22 there because obviously you want your kid to succeed in life but when they’re not 100 percent, you want them to fail just enough to still get services. If you’re caught in that area between no delays and not enough delays, your child doesn’t get help. At least not unless you find a therapist through private insurance. Sometimes that’s hard to do.

I won’t break down every detail of every report. We have three in writing right now, and I have those in my hands. The other two weren’t ready in writing yet.

Physical therapy: 42% delay
Developmental therapy:  33%
Occupational therapy: 17.5% (That’s an overall average though and one of the areas was 35% so it still qualified him)

We’re continuing the same schedule we have had with therapy, and this coming year is going to be spent focusing on getting him to be independent enough for school. One more year til my sweet baby starts preschool! Ahh!

The next emotional hurdle for me, I think, is that there’s talk of teaching him to use a wheelchair. I am willing to bend heaven and earth to get him to succeed in a modified way, but actually seeing my baby in a wheelchair is going to be hard for me. When it happens, please don’t tell me it could be worse. Please don’t tell me to love him as he is. I do. That doesn’t mean I’m not entitled to grieve.

Right now I’m not grieving, though. I’m overjoyed because my angel can talk!! He can talk the way he’s supposed to!!!!!

Categories: PVL

ENT pre-op

August 19, 2011 Leave a comment

We saw the surgeon for Perrin’s adenoid removal. He wasn’t at all familiar with Perrin’s PVL, which I don’t like, but there aren’t a lot of options. He’s an ENT. He doesn’t exactly study brain trauma. Neither do his colleagues.

He did ask a lot of questions about what Perrin’s capable of and not capable of, so I hope that helps. He agrees that based on the fact that Perrin does snore, gasp for breath in his sleep, have a chest rattle, and sleeps with his head tilted back, the benefits for the surgery outweigh the risk or the benefit of waiting until he’s older.

I let Louie ask as many questions as he needed to, and he seems a lot more comfortable with the idea now that a real doctor spoke with him. We’ve both had very negative experiences with nurse practitioners in the past so I guess I don’t blame him. The difference was that I went in to the initial appointment last month wanting a surgery of some sort to fix what appears to be sleep apnea and poor positioning (which will cause further physical delays) and he went in thinking we’d get some magic pill or something. He had this idea that Perrin would get a cpap and we’d be done. That’s backwards from the way it really works.

Now I just hope the adenoids are enough or we’ll be revisiting surgery in a year for his tonsils. He does have large tonsils so it’s a definite possibility but I’m hoping we can put it off. At least if we can delay it for a few months beyond that, it’ll help. In a year, he’ll be starting preschool. That’s a big enough thing to adapt to without healing from surgery for 3 weeks on top of it.

So as of right now, surgery is September 6th and the post-op appointment is the 20th. I’m nervous but happy to be moving forward. It’s nice to have something that can be easily fixed for once.

Categories: PVL

A very private hell

August 14, 2011 2 comments

I am so, so proud of my little boy. He can crawl. He can cruise. He talks up a storm. He even stood alone for a bit yesterday. He is really doing so great, for him. He has severe delays physically, obviously, but he has been progressing so very well.

Still, I have my days when I guess I feel sorry for myself, or for him, or just for the whole family.

We didn’t bargain for this. That may sound bitchy, but unless you’ve been in my shoes (and I guarantee you haven’t), you can’t judge me. It’s not pity. It’s anger. I don’t know who to be angry at. There’s nothing I can point my finger to and say “This is why my kid is disabled.” Prematurity? Probably. How do you direct anger at that? I don’t want this. Not for me, not for my family, and especially not for that sweet, sweet angel that has done nothing but love people. He’s bright (yes, he’s bright mentally – not that it would make him less loved if he wasn’t), he’s loving, he’s cute, he’s polite, and he’s a perfectly adorable little boy but he has this… thing and it hangs over him. It’s going to follow him for the rest of his life. I worry. Will he die alone? Who will help him when I’m gone? Will he find someone to love him and have a family with him, or will he die a bachelor in a lonely little apartment somewhere, never knowing what it’s like to have love reciprocated? People are fucking shallow. Don’t tell me they’re not. This is a legitimate worry. I’m not afraid of my eventual death. What I am afraid of is him being left behind.

I don’t want this horrible thing for my baby. It can fuck directly off… except it won’t. It just won’t go away.

Yes, it could be worse. I know that. I don’t need to be told. That doesn’t help. What seems like it would be a comfort only makes me feel guilty for feeling grief. I know it could be worse, but it could sure as fuck be better too.

Louie was telling me about a little baby he saw running around the hospital last night. He feels it too, especially when he sees these little babies that are doing things our son can’t. Yes, we get jealous. We’d never, ever wish this on another child, but this is a very private hell. Even within the same disorder, the stories vary so greatly. Nobody could ever understand. I have friends, thanks to the wonderful web, that have kids with the same condition and I often can’t identify with them. I have a wonderful support system. I can’t say I don’t. They’re there to cheer and to cry right along with us, but there’s no comparing. I don’t care what anyone says. We all do it. It’s natural. We may not say it out loud but when we see a kid walking at a certain age, we think “Wow, my kid will do that soon.” or “My kid did that a month earlier.”

Perrin is racing, racing, racing just as fast as his little determined but damaged brain can take him, and kids half his age, and now a quarter of his age are passing him up. I love that they are, for their own sake, but I will admit as I’ve admitted before that I’m jealous.

99 percent of the time, I focus on what my son can do instead of what he can’t. I am so, so thankful for everything he has accomplished. Then there’s the other 1 percent of the time, when I have these feelings and fears, and nobody can understand it. Sometimes not even my husband, because we approach it from different viewpoints, yet we’re all each other has because there is only one unique Perrin. 99 percent of the time, that unique Perrin makes me beam with pride. Right now, I’m in the other 1 percent and I feel very alone there.

Categories: PVL