Field trip to a pumpkin patch

We had lots of Halloween events, not just for the boys, but for us too!  Lots of recaps this week because I just didn’t have time to blog these past couple of weeks.

LJ went on his first field trip two weeks ago and I had to go with!  I loved it when mom came on my field trips.  We went to a Pumpkin Patch, which was actually kind of exciting for me since I’ve never been to one.

I was nervous for two reasons.  First, I wasn’t sure how LJ’s wheelchair would handle the terrain.  His chair is ok.  It does its job and positions him well… but it doesn’t have any shocks and it’s durability is terrible.  I was worried he’d be jostled everywhere they went and wouldn’t have enough head control to keep his head up and look around.

The second reason for my nerves was me.  Let me just say that I’ve always had a bit of a social anxiety.  I was worried that other parents wouldn’t talk to me.  I know it’s silly but sometimes being a young mom makes me feel out-of-place. 

Luckily, I hit it off with quite a few moms.

First, the kids went into a corn silo (a silo filled with, you guessed it, corn!)  I eyed it a bit timidly till one mom said, You want me to get in there with him?!  So I climbed in there and she passed him to me.  I think I’m still shaking out corn from my pants, weeks later.

Then we went on a hay ride!  This was awkward only because I can’t hold LJ and lift a wheelchair up onto the back of the bed.  A dad (or possibly a granddad, I couldn’t figure it out) was a huge help.  We stopped by to pick a pumpkin and then went to the corn maze.  I made it about a quarter way through in LJ’s chair when I turned back around.  By that time the kids had made it around the maze twice. 

We stopped by and checked out a few animals and then headed to a big hay stack.  I think the kids enjoyed this the most.  I laid LJ in the hay and climbed up there with him.  Some of the kids buried his legs in the hay.  It was adorable.

I’m so glad I went.  Sometimes I have such a hard time seeing LJ in a classroom setting that I just assumed these feelings would carry over to our field trip.  They didn’t.  In fact, I think I cried with joy afterwards.  The kids are so sweet to LJ.  And there are these two girls in his class that adore him.  At the end, we took pictures of all the kids together on the hay stack.  The teacher positioned LJ in between these two girls and instructed them to hold them up.  This made me nervous so I climbed up there and hid behind them but they were so good with him.  I guess I never really thought about how being a peer model could be beneficial for them too.

I cant’ wait for our next field trip!

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What they don’t tell you about g-tubes Part 1

Confession.  Oral feedings use to be a huge battle for us with LJ. 

It’s really not uncommon for children with spasticity or even low tone.  We would spend many hours trying to get as many calories into him as we could.  We finally started limiting our feeding times to 30 minutes because beyond that, we would both end up in tears and he would be burning more calories then gaining.  No matter how often we tried to feed him, any weight gain was measured in ounces.  It was a slow process, but he wasn’t losing weight.

The biggest reason we decided on a g-tube (feeding tube) for LJ was because everytime he got sick, he would lose any progress we made.  Then, for some unknown reason, LJ starting gagging.  The GI doctor originally thought this was a viscious cycle of being a little malnourished (which started to occur after two illnesses in one month).  With both of these issues, we felt we didn’t have many other options.

I asked questions.  I talked to other moms.  I knew we weren’t doing it as a convience to us (although it has been a huge stress reliever).  We discussed fundos (fundoplications- a “treatment” for reflux) and after some testing and consideration, decided against it (it’s a more invasive surgery then the g-tube).  We made sure to stay 5 days in the hospital so he wouldn’t develop refeeding syndrome.

I didn’t realize the concerns we had before would be replaced by new ones.

In the hospital, we gradually increased his feeds until he was at 6 ounces of Pediasure, 5 times a day.  Sometimes we fed him while he slept and he did very well.  After a few weeks of being discharged from the hospital, we were told to increase to 7 ounces a feed.

That seems to be when the problems began.  He started vomitting after the 3rd feed of the day.  I thought his feeds were too close together so I cut two feeds down, one to 5 ounces and one to 6.  The vomitting continued and even started after his morning feeds. 

This is where we figured out how to vent him.  Venting is basically taking an empty syringe, attached to a tube, that you hook up to his button (g-tube) and let the air out of his tummy.  Like burping, but faster.  This helped a lot, but he was still vomitting.

We tried staggering his feeds, trying to have more time inbetween to digest but we always ended up feeding him at least once while he was asleep.  And this is disasterous since we can’t raise the mattress as high as we could in the hospital.  I was so freaked out that he’d vomit in his sleep and not turn over or wake up.  Unfortuneatley, insurance will probably not cover a hospital or sleep safe bed.  Heaven forbid it be convienent for him not to choke on his vomit.

We tried to reduce his feeds back to 6 ounces a feed, but his vomitting persisted.  Finally, we took out a feeding all-together and the vomitting greatly decreased (we also increased the other feeds to 7 ounces).  He’s not getting the calories a nutritionist might say he needs, but the way I see it is he’s getting more then he was before the g-tube and maybe just as much after getting it because of the vomitting.

I was never told that a little bleeding from the g-tube site was normal (they finally told us after a frantic phone call).  Or how much the actual button could move (quite a bit).  Or the granulation (extra skin) that could develop around the g-tube site if the button moves too much.  Or that oozing would be the normal.

I’m just frustrated that ALL of the medical professionals made it out to be like it would solve all of our problems.  If it wasn’t for reading other blogs or talking with other moms, I wouldn’t have known about these issues beforehand.  I think if I hadn’t known that there would still be issues we needed to manage, I’d be furious.  I hope this better informs parents of what to expect.

Despite some of these (minor) issues the doctors failed to warn us about, I’m happy with our choice.  LJ has gained 8 pounds since the surgery.  He’s filled out, has more energy, and when he gets sick, we’re able to give him the fluids he needs.  The downside is his oral feeding skills have decreased, but I think he may have been on this road before the surgery.  We’re still working on it and hope to one day not be so dependent on it.

Please note that I am not a medical professional.  This post was written based on personal experience in hopes to guide parents to be able to ask the right questions of their doctor.

Parenting Children with Special Needs Magazine Event

Saturday was a launch event hosted by Parenting Children With Special Needs Magazine.  I’m so excited about this magazine.  It’s going to provide so many resources to families and spread awareness.  I hope the magazine will make it easier for parents to find resources they need.  I know it wasn’t easy for me.

ANYWAY, the event!  One of the first things I really noticed was that I didn’t feel like everyone was looking at us.  Really.  I feel like people stare everywhere we go.  At the ranch, where the event was held, it felt like we belonged.  No one was judging us.  Everyone had a smile for us.  Volunteers weren’t afraid to talk to us or ask about LJ’s disability. 

We let Noah hit the “train” with my parents (Louie was out-of-town) while I got LJ’s feed ready.  I don’t think Noah really cared about it, but he didn’t NOT like it and it gave me time to get things ready, so it was a win.  LJ had a photo shoot while we waited.  It was quite bright out, so I’m not sure if she got a good picture.

Next, we hit the goats.  I was going to see if I could get the boys to pet them but the goats were too busy taking food from everyone.  I realized later that there was actually a petting zoo inside the barn that we walked right past. 

Then I thought it would be a great idea to get Noah (who, remember, is about 15 months) to have a pony ride.  We watched some kids go before us but as soon as I put him on the horse, he was twisted around, looking at all the other kids on the other ponies.  The volunteer was a good sport about it.

Afterwards we headed back to the crafts area.  I would have helped Noah make a crown, but he really hates wearing things on his head.  Plus, I’m pretty sure he would have eaten some glue or something.  So instead, we had the boys put their handprints on a poster with other kiddos and he had a little paint instead.  Good times.  

LJ's is the smeared brown one LJ’s is the smeared brown one at the top.

Next, they got to try playing with some shaving cream.  I really loved their sensory ideas.  I’ve been wanting to do more craft like projects at home, but was weary on how Noah would react.  I’m glad we got to test these things out because I know I’ll probably wait on things like finger-painting and chalk.  And shaving cream.  And glue.

He really didn’t like it at first, but then it wasn’t so bad!  Way to sneak in the OT!

I also got to meet the editor, Kara Cowie.  We exchanged information and I told her about the Facebook group I created for parents of children with CP.  Maybe one day they’ll feature a story about our family!

What a great event!  It seems like this month alone I’ve gotten 3 invites to different events pertaining to special needs.  It seems like they’re popping up out of nowhere!  I’m excited to attend the next couple of events and hopefully have more time to connect with other parents.  It’s really, really nice to know we’re not alone.

First week of ECSE Preschool

Alternate title post, “The Battle Begins.”

Well, he survived.  Actually, he did pretty well.  It was me that survived.

His first day was only for an hour and the parents attended as well.  We sat through a presentation about the curriculum and drop off policies, where I realized this was only the beginning of battles of things like who can drop off what kid where and when and perhaps more important things like getting the equipment my son needs.

Wait, that realization occurred on his second day.

Let me backtrack a bit.  First, the bus company never called us to tell us important factors like when they’d be here to pick up LJ and where.  Also, I wanted to make sure the bus had AC, after some of the horror stories I heard.  Luckily, LJ’s teacher knew the morning bus driver and was able to call her directly. 

Despite having notice of the bus’ arrival time, I scrambled to get LJ ready.  When the bus arrived, I remembered the teacher telling me it wasn’t a wheelchair bus (they had car seats), but there weren’t going to be many students so it could probably fit.  I told LJ’s bus aide that I would probably have to show her how to break down and assemble the chair but she never got off the bus. 

Louie went up to the school to watch the nurse prep LJ’s feeding (he has a g-tube).  This is something that makes me wonder about how other children’s feedings are handled at school.  On Monday, they proposed to have a staff member take his feeding bag to the nurse’s office for her to prep, then bring LJ to the nurse so she can set it up and then take LJ back to work on oral feeding or whatever.  Then take him back to finish up.  This seems to me like a huge waste of time.  And almost like it’s singling him out.  I’ve seen a DVD on the Mickey button (which is the type of feeding tube he has) and they all rave about how easy AND inconspicuous it is.  Not that that’s the reason I got it for him.  I just don’t understand why they preschool staff can’t do it, in the classroom.

Honestly, I know I’m just preparing myself for battle based on experience.  No, LJ has never been to school before.  But since he was a baby, I learned quickly that nothing gets done unless I bitch or do something about it.  Maybe they haven’t ordered equipment yet because they want to see if they have anything that works for him.  Maybe they want to figure out what would work best (even though I’ve told them what we have).  Maybe they needed to get through the first “week” of craziness that is the beginning of school.

I know school will be really good for him, though.  He has an amazing teacher and I know the other staff are quickly falling for him (it’s too easy).  On Friday, he came home with a huge smile on his face.  Then he passed out for 4 hours.  Hopefully, he just needs to get use to it.

Also?  I love this little boy.  He came right up to LJ’s wheelchair during recess and starting talking to him.  I already thought he was adorable and now he made my heart melt by treating LJ like any other kid.

Myoclonic seizures vs jerks

Some time before LJ’s surgery but after his birthday, we saw his neurologist.  It was just our annual appointment but between visits, we had raised LJ’s dose of Clonazepam because his jerks were becoming more frequent.  Plus, his therapists at the Rehabilitation Institute (RI) felt these jerks would start interfering with his ability to do things independently. 

At our last visit, LJ was diagnosed with myoclonic seizures.  Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. 

I expressed the therapists concerns, along with my own.  They seemed more frequent when LJ’s Botox was wearing off, or when he was really tired and hadn’t had his medication in a while.  I’m not sure what I was hoping for, but then the neurologist started mentioning Keppra.  I had mixed feelings about this but he reassured us that we’d only start the Keppra after the EEG verified they were indeed seizures.

The following Monday (I can’t believe he got us in that fast!), Louie took LJ to get his EEG done.  The nurse asked him to stay afterwards because our neurologist wanted to talk to him (which just shows me how awesome our neurologist is… I mean, even the nurses were surprised he was coming down).  He told Louie that the neuro-something (I’m not sure what they’re called) had to review the results, but he did not think LJ was having seizures.

When falling asleep, does your body ever jerk, startling you awake?  That’s a myoclonic jerk.  Hiccups are also apparently a myoclonic jerk.  Imagine how annoying it would be to have these jerks… all.the.time. 

I suppose I should have taken this as good news but all I could think was… now what?  Before, when we believed they were seizures, there was an answer.  And as much as I didn’t like the idea of more medication, there was something

So I did what many other mothers do.  I googled it.

Turns out, we’re already doing the treatments that many sites suggested.  He’s on the exact medication, albeit the lowest dose, and he receives Botox.

Wait, I thought.  Botox?!

I guess it makes sense.  From what I gather, a jerk is a nerve reaction as opposed to a seizure which would be a reaction to electrical charges in the brain.  I get why it’s happening to LJ; he had significant brain damage.  In fact, everyone expected him to develop seizures.  Hell, I’m sure they still expect him to.

I need to do more research on them, although I have a feeling I won’t get too much more information then I already know.  The most frustrating thing when dealing with things like this, seizures, hell, even depression, anxiety… it’s just a PRACTICE.  The brain is still a very unknown territory, especially when it comes to things like damage.  And then there’s conflicting arguments, for example HBOT (hyperbaric oxygen therapy) where many many parents swear by it, but just as many, if not more doctors say it’s a load of crap and probably just a scam, with how much is charges.  How do they know?  How do they know how the brain is reacting to this treatment?  No, it’s not an exact science, but neither are the drugs you’re prescribing my child. 

Which also makes me wonder how they read LJ’s EEG?  He will always have abnormal brain activity due to the amount of brain damage.  The EEG will never be “normal”.  Do they compare his results to “normal” EEGs?  Is that really an accurate thing to do considering the circumstances?  This reminds me of how they keep putting LJ (and all the other kids with special needs) on the same growth chart as typical kids.  In case you didn’t realize this, MY KID IS NOT TYPICAL.  Why they do this when there is a CP growth chart out there, I have no idea. 

Sometimes I get overwhelmed, thinking about LJ and his needs.  But then he’ll smile at me and it all melts away.  I know this is just one of many things we’ll have to deal with on Our Yellow Brick Road, but we’ll deal with it together.  He’s worth it.

Saying goodbye

This week will be hard.  We will say a lot of goodbyes and I know I’m going to cry.  A lot.  I have been already.

This is our last week of services with our therapists through Early Intervention.  This is our transition week.  We’ve gone through a few OTs, one PT, one SpP (speech) and 3 aquatics PT (although we can continue with our aquatics PT through insurance).  But it doesn’t mean anything in terms of how I feel.  These therapists have been through so much with us that I feel like they’re more than therapists.  They’re our friends.  I’d even say they’re part of our family.

These women, Kim, Mindy, Teresa, Becca, Debbie, Diane, Tresy,Amy, Susan, have done more than provide us with therapies and routines for LJ.  They’ve helped us get through one horrible appointment after another.  They’ve given us different perspectives of LJ’s behaviors.  They’ve talked us through some frustrating diagnoses.  They’ve supported us as parents, grieving with us, understanding our situations, giving advice, and even putting us in our place (by that, I mean not letting us dwell on negative feelings or whatever the situation called for). 

And while I’ll never forget any of these beloved women, Kim, LJ’s vision teacher, will always have a special place in our heart.  She has been with us since LJ was only a few months old.  She listened to me rant and rave about doctors, appointments, therapies, and other unrelated things.  She was honest with her opinions.  She was an advocate, not just for LJ, but for us.  And while all of our therapists did this, she’s been with us the longest.  She knows him.  She knows me.  She knows the pain that we’ve gone through and has seen us through it. 

The best gift she gave me was showing me LJ.  Not his disabilities, or even is abilities, but him.  She helped me see past all of his equipment, delays, diagnoses, and helped me see his beautiful personality.  This is something I could never repay her for.  Where I once would constantly worry about what the future would hold, I am now able to enjoy the here and now.  I’m able to enjoy my son, for who he is.

I’m going to miss (and already do miss) these wonder ladies who have made such an impact on our family’s lives. 

LJ would not be here is it wasn’t for each and every one of our therapists.  He wouldn’t have made as much progress as he has.  He wouldn’t be where he is today, without them.

And neither would I.

So much for taking some stress off

Well, we’ve already been through 1 nurse and 2 agencies.

From the start, I knew I’d want to meet the nurse before having them assigned to us.  I’m glad we did because the first nurse they sent us lived 80 mile away.  At the time, we were asking for 10 hours a day, 5 days a week.  It’s a lot but financially we’ve been hit pretty hard with all of LJ’s therapies, annual appointments, and his surgery.  Right now it’s a busy time at my work, so I was hoping to try to catch up on some hours.  When school started, we would reduce the hours. 

We decided to go with a different agency, since the first one didn’t seem to use common sense (hello, what would we do in the winter time when it snowed?). They said they’d send someone out Thursday but they weren’t sure what time, so they would call before hand.  No one showed up.  No one called.  It wasn’t until the next day that the agency called and explained that he didn’t have all his paperwork in, blah blah blah.  Ok…

So Monday rolls around (the day of LJ’s EEG, so we were sleep deprived) and I get a call early in the morning.  The lady asks, do you not need a nurse today?  I’m like, what is going on?  No one told me you were coming and I told them I had to meet the nurse before signing up with her.  She apologizes and I feel bad for her coming out for no reason.  But really, I was not with it that day.

We finally meet her the next day.  She’s perfect.  Plenty of experience in pediatrics, plenty of home nursing care experience, has kids, seems very sweet.  I tell her about the schedule change when school starts and she nods.  She didn’t start until Friday, which I find odd, since she was suppose to start Monday, she should have had her whole week free.

Everything seems to be going well.  She tends to do things her way, which is alright.  There are a few things that we’d like to do our way, for consistency and so LJ can anticipate what’s happening.  I start talking about school, routines, therapies I’d like her to start working on, after she’s had some demonstration with our therapists.

Last week, LJ had to have a follow-up GI appointment.  His button has been moving too much which has caused the skin to grow weird (I wasn’t there for the appointment so I’m really not too sure about what I’m talking about). They sprayed some stuff on it to get it to fall off and instructed us how to clean it and use tape to keep the tubing from moving the button. 

Louie’s pretty accurate when he relays information to me from doctors.  Sure, sometimes he forgets to tell me things, but what he does tell me, is usually correct. Even if I’m there, we tend to have different perceptions of what the doctor says, and he’s usually correct.  It doesn’t bother me like it once did; he’s just better at science then I am!

Anyway, the point of that was that he was showing the nurse how to do some of those things, and she would talk over him.  He’s get a little irritated but would get back to the point.  Then she said, well I don’t know how much longer I’m going to be here with the school schedule.  Ummmm…. okay.

Needless to say, that upset us a bit.  First of all, we mentioned this to her and she didn’t make it seem like a big deal.  Second of all, we wouldn’t be spending all this time training her if we knew we had to do it all over again.  The agencies had offered a temp nurse until we got a permanent one and I said no, because training in itself takes a lot of time.

She was off and on the phone that day with the agency, even after Louie told her it wasn’t her job to get us another nurse and that we’d take care of it.  Later, after she’s off, she calls me and tells me that she really is in love with LJ and our family and that the agency called her to tell her that we actually wanted more hours then she thought.  I told her I’d talk to Louie about it and I’d see her tomorrow.  Louie just said he would talk to her about the hours we needed.

This morning, I realize it’s pretty quiet and notice it’s 10 after 7 and our nurse isn’t here.  Ok… I give her some more time then I call her.  She tells me that she took herself off our case on Wed and finished out the week (she left early on Friday) and didn’t they send someone else?  I told her that I was upset because no one told me AGAIN what was going on.  She said do you need someone? And I start to talk, although I’m not sure what I was saying but she just starts talking over me again.  Finally I said, don’t you worry about it and hung up.

The thing is, I feel bad about this!  I mean, obviously she wasn’t a great fit with our family, but I liked her and I hate that our relationship ended like that.  At the same time, I’m furious that no one told me what the heck was going on!  Don’t they think it’s important to inform the families?  We were even going to use the same agency, but Louie was just like, forget it.  We’ll use one our therapist’s recommend.

We have 2 weeks left with our Early Intervention therapists and one week with our Rehab. Institute (R.I.) therapists.  Luckily, the therapists at the R.I. are putting together some stretching guidelines and therapies to work on.  I really wanted our nurse to have a good understanding of LJ and his disabilities so they could better understand him.  School starts in 3 weeks, which seems to be our deadline now.

Obviously, there was a huge communication issue, regardless of how many times I tried to clarify it with her.  Did I miss something?  What do you guys think?

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