Category

Parenting

Hips Don’t Lie

But they do fail. The little man’s hips have been an issue for a few years now and things are quickly coming to a head.

Hip problems are fairly common for children with cerebral palsy – in the little man’s case, a mix of spastic muscles pulling on the joint and his inability to do much weight-bearing on his legs has landed him in a deteriorating situation. We are dealing with developmental hip dysplasia. Basically, one of his joints has not formed properly. The other is okay, but not great.

I’ve learned so much about hip development over the last couple of years, but I’m not a doctor and have no clue how to explain this without demonstrating with my hands. So I googled a diagram. Its like school!


The little man isn’t at the point where he is having any pain and hasn’t lost any of his already limited motion. One leg is noticeably longer than the other, it is becoming increasingly difficult to change his diapers, and his bottom half is slightly rotated. We’ve been watching it and trying other options, but the thing I have been dreading most is pretty much our only remaining option.

::sigh:: Surgery. ::sigh::

His hip hasn’t dislocated. . . yet. But without surgery he is heading for more discomfort, complications, and pain. It would also mean giving up on a future where he can stand or walk. And no, we aren’t ready to give up on that. Even just being able to stand and assist with transfers would mean a completely different life – one where he can use the restroom in privacy and ride in a regular car seat.

We are tentatively on the schedule for a hip osteotomy in January where the little man’s surgeon will go in a carve out a better socket for his femur to fit in snugly. It isn’t pleasant. On top of the awfulness of putting a child through this kind of pain when you aren’t able adequately explain what is happening to him, he will come home in a body cast for two months. It makes me sick to my stomach just to think about it and has since we first learned about the possibility from our surgeon in Arkansas.

We’ve always had great doctors and a great team. I trust them. I know we are making the right decision, but that doesn’t make it any easier. Surgery won’t be final until we have a massive team meeting in September. I guess if you don’t have a loved one with a major disability or other illness, you might not quite understand what I mean by “team”. It isn’t an exaggeration. No less than 12 people will be involved this meeting, including the husband and I. No decisions are made alone. Thankfully.

First Grade!

Wheel Chair - iStock_000011476045LargeMy little man started first grade a couple of weeks ago. Now, if you have been reading this blog for any real length of time, you know that the little man is severely disabled, mostly nonverbal, and largely wheelchair bound. This makes school a very different experience for him than a typical kid. For starters, his classroom time is split between traditional lessons and life skills. His kindergarten curriculum included things like going to the grocery store and buying Christmas gifts for his family.

Classrooms like this are called different things – in our last district it was Community Based Instruction (CBI for short), here it is Special Day Classes – but either way it means 100%-ish in a special education environment. [I say “ish” because placement in these classes doesn’t prevent a kid from joining the mainstream classes occasionally.] This may be somewhat different than what you remember from being in school where there was sort of one special ed class and anyone with “an issue” went to the same place. Now schools do better with dividing kids up based on their level of disability – maybe they need to be in the full class like the little man, or maybe they only need to spend part of a day with a special class, or maybe they only need extra help from an aid throughout the day, etc.

Transferring the little man’s services has been nerve-wracking. It is a lot to do in a very short window of time. Difficult in the best of times, for sure. And still a work in progress! The school district office was closed and I wasn’t able to register the kids until mid-July, only a month before classes started. I was pre-stressed about the amount of appointments and evaluations we were going to have to go through in just a couple of weeks to get a placement for him. And about the vacation time I didn’t have to do that. And then. . it didn’t happen. The district did this amazing thing where they based his placement on his most recent IEP (completed in May in Arkansas). This may all seem very obvious to you, but I had no clue it was even an option.

The placement he started school with is a thirty-day temporary placement. We will come together soon to discuss how it is going – this gives the teachers/aids/therapists time to learn all of those things about the little man you can’t get from a handful of papers. Love this! True, I’d hate for his initial placement to fail, but it would be far worse to be locked in to something long term based on information received before they even met the kid. Or even worse, missing important school time after going an entire summer without his important therapies.

Okay, let’s talk about that placement. It looks like the school district here is going to be just a lovely and helpful as the last one (that isn’t sarcasm, they were great), but that still doesn’t mean it has been all puppies and roses. Let me replay a portion of the conversation I had with the school:

School District: We have him a place at [redacted] Elementary with [teacher]. That is a special day class that has 2nd to 8th graders.

Me: I’m sorry. Did you say 2nd to 8th?

School District: Yes. I know that is quite a range.

Me: ::thinking:: What the hell!?

To learn that my first grader was going to be the youngest kid in a classroom with middle school kids (disabled or not!) was a bit shocking. For some perspective, his class in Arkansas was K-2. They had another classroom for 3-5. Turns out the district puts kids who need medical attention – like the little man’s g-tube – in this classroom. I don’t know why there are middle school kids on-site at an elementary, medical issues or not.

I remained calm and we are giving it a try. I’ve always taken the little man’s medical providers at face value when they suggest something and know they wouldn’t do anything to intentionally put him at risk. Due to my work schedule, I haven’t even seen the classroom or met the teacher yet, but the husband had a good first impression. And the little man seems to be enjoying himself.

One week in and his teacher told my husband that she really wants to keep him in her class. And that she will work to make sure he has everything he needs geared to his age group. I’m not surprised by this reaction. The little man is sneaky and can get people tied around his little finger in a matter of minutes. Just ask his Arkansas teacher and therapists. Or his grandparents.

Anyway, I’m looking forward to having that first meeting with “the team” and getting some first-hand opinions about how he is doing in the classroom and handling the move. And he has his first appointment with his new pediatrician at the Stanford children’s hospital today. Getting that side of the services going will make me feel more at ease, I’m sure.

To sum it all up: I’m nervous. The little man is smiley, as usual.

What We’ve Got Here is a Failure to Communicate

The little man had his first meeting about the possibility of an assisted speech device last week. This is very exciting as using one of these would dramatically increase his vocabulary and allow him to express some of those more complicated thoughts he has. The little man is extremely sociable and will just babble your head off; I’m excited to see what he is able to say once he learns to work with a device.

And now for the time where I say what a lot of special needs parents think, but keep to themselves – It is also sad. Because another device feels a bit like another defeat. In a world where you fight every day for your kid to live as normally as possible, adding another device to his medical entourage is frustrating. A part of me fears that he will move backwards with this device and lose some speech he already has. Like when he completely stopped eating anything by mouth after he got his button.

I’m a rational person though. I know that the truth of the matter is closer to that first paragraph than the second. And – most importantly – I trust his therapists to guide us in the right direction. They are lovely and want the little man to succeed as much as we do.

Okay, now back to the meeting.

The little man already uses an ipad in his classroom, but, because of his inability to isolate exactly where he wants his finger to go, it works best when you display only a couple of choices. This makes it a great learning device – he can identify colors, letters, etc. – but not a communication device in any way.

Even though everyone assumed he would respond best to a direct touch device (the kind where he would touch a picture on a screen to make it say a certain word), we tried a couple of other options. Just because, why not? First up was a device with great big switches/buttons.

This option clearly wasn’t for the little man. All he wanted to do was reach for/touch the screen; screw those buttons. I could tell that he was just humoring the company rep and his therapists with this one. There is definitely an option of using the large buttons to help the little man play with some of his toys as he grows, but his communication level and movement ability allows him to do more for an everyday device.

Next up was a device that followed your eye movement. Everybody knew this wasn’t going to work for him, but we gave it a go anyway since it was there. Personally, I was fascinated. This device followed your eyes allowing you to concentrate on an image to make it speak. Absolutely amazing. Again, this wasn’t for the little man – he is a very mobile little guy and could never sit still enough to get this machine calibrated. I wanted to play with it though. . .

The end result of the meeting is that we intend to go with a direct touch device, but we don’t yet have enough information to make a final decision. The best way to describe the device is as an extra-thick tablet with plastic guard over the top to guide his fingers into the right holes. Here is the kind of thing I’m talking about:

Image from AAC Resources Network (http://aacresourcesnetwork.com/)
Image from AAC Resources Network (http://aacresourcesnetwork.com/)

Unfortunately, the little man wasn’t having much success with the largest key guard the rep had. The reasons were twofold: 1) the tone in his arm made it difficult for him to narrow down the area he needed to put his finger and 2) the device was set-up to be focusing on the word “go.” As in, “let’s make that toy go.” Well, the little man can say go. So he was haphazardly banging on the device when they told him to push go and just saying the word. I think he probably would have been rolling his eyes if he had that ability. We’ll be able to tell more about how he relates to the device when it is a little more individualized.

On top of that he was just overwhelmingly distracted by the people, the toys, the office, the window, showing off, etc. I look forward to seeing how he responds when we get to try a larger key guard and he is able to work one-on-one with his speech therapist during their regular session. You know, at a time when he is used to putting in the work and doing what she says.

So overall, it was a great first meeting, but we have more to think about and discuss. He should have a whole new world of speech in his little hands soon though.

Kindergarten!

It is official! The little man is a kindergartenian. Kindergartenist? Ah, kindergartner! Third time’s a charm.

In case you don’t remember, here are the big issues we were facing with the start of kindergarten:

1) Having someone home to meet the little man’s bus in the afternoon. We weren’t able to find any kind of special needs after school care.

2) Pick the daughter up from school. She goes to a public charter school that does not offer bus service.

So, how are two working parents handling this? We are both getting up at 5am. Then the husband leaves to arrive at work by 6am, I get the little man ready to get on the bus at 6:45-7:00 and I have a little bit of extra time to finish getting ready before taking the daughter to school and arriving at work around 8am. The husband then gets off at 2:30pm, makes it home to meet the bus, and then immediately loads the little man up in the van to go pick up the daughter.

Is this sustainable in the long run? I’m not sure. We are working on trial and error right now. Last year we tried an arrangement to get the daughter home that pushed me too far so we had to brainstorm and adjust. We will be prepared to deal with these new challenges as they arise.
School

First impression? The little man is adjusting to kindergarten very well. His teacher created a little book to go on the back of his wheelchair that details some of his common words/sounds, some of the things he likes to do, and extra information about him. It has plenty of empty space to be added to as he goes along and they encourage us to add to it also. At the open house, the two main aids in his classroom immediately started talking to him and asking him questions instead of me, even though he wasn’t able to answer. Love that. Just that one little thing shows me they understand what it is like and have experience working with special needs, especially largely nonverbal kids.

He got to play with shaving cream and dried beans on the very first day. The little man is a big fan of playing with that kind of stuff, so I know he had a blast. Great way to start.

He started riding the bus on day three. That was incredibly nerve-wracking for me as I was out of town, but he took it in stride. The bus driver has been driving this same special needs route for years, so I feel like he is in good hands. He cried a bit getting on the bus for the second time, but the hubby seemed to think it was more about the change in routine. Since then, he was been his regular happy self, waving as he leaves in the morning. An interesting bit: If the little man is going to miss school, I have to text the bus driver and let him know. This isn’t a standard stop – if we don’t need him, he won’t come by our neighborhood at all. He checks his phone at every stop looking for updates. Just one of those little unusual things that comes up when dealing with special needs kids.

I was a little disappointed because he didn’t get his therapy the first week. I completely understand that they have a lot of schedules to learn and work out, but by the start of the next week I could really tell he hadn’t been stretched out. I didn’t even think about going through some exercises ourselves. Bad parents.

The One Where I Call Bullshit

You know, if you read a lot of blogs written by parents with special needs children you start to see posts that say things like “No, I don’t wish my child was ‘normal,’ because then he wouldn’t be the same” or “If I had the power, I still wouldn’t change things. I love my kid how she is.”

office space

I call bullshit. Not on the fact that these parents don’t love their children no matter what, but on the fact that they wouldn’t change things if they had the power. I love the little man. I love his sweet nature and his contagious smile. But I would give anything to take this disability away and give him the chance to live an easier life. Even if it means he turns out to be an asshole.

It is all just silliness, of course. None of us have the power to change these kinds of things. But still. Those kinds of statements just rub me the wrong way. Sort of a, “See! I love my child so much! So much that I would keep everything this way! Our family is so accepting and loving! I can’t believe you want to change your kid.” Now, I know the parents saying these things don’t think that way. They are all – in general – lovely people and I get the sentiment they are going for. But I think it sets a bad precedent. I think it would do more good for special needs parents everywhere to admit that we would love for our children to be able to live a “normal” life and, in turn, create an atmosphere where we can all admit our secret wishes.

A good healthy dose of honesty. I am a real parent, not someone who had achieved a higher state of being through my personal challenges. I dislike sickness and whining just as much as you do. I’d love to get a few minutes alone too. I can’t always balance on the pedestal some people want to put me on. [I’m not trying to brag here, just pointing out a common reaction to “my kind” of parent that I’ve experienced.] But I’m still a pretty good parent. So are you, probably.

You aren’t a bad parent if you wish your child had it easier. You aren’t a bad parent if you are tired of changing diapers way past diaper-changing age (we are on year five now and it sucks – I think I’ve said this before.). You aren’t a bad parent if you wish that you could, just once, leave the house without having to plan your day around handicapped access.

It is okay to admit that you hate a lot of things you have to do every day. It is okay to admit that things would be easier – for your kid and for you – if things were different.

Wishing that things could be different doesn’t mean you love your child any less. It just means that you know what challenges they face and wish you could help more. Isn’t that what we want to do for all our children?

And It Begins!

Wheel Chair - iStock_000011476045LargeThe little man’s kindergarten journey, I mean. And guess what?! You, dear readers, are going to get to accompany us as we navigate this new territory.

We had our first meeting with the district’s special education coordinator last week. It was mainly just to meet at the little man’s current school, make sure all of the referrals were ready to go, and ask any questions we might have about the process.

And to fill out forms, of course. Probably some we have already filled out before. Many that are incredibly difficult to complete. You know the ones – where they give you two lines to describe your child’s medical conditions (ha! I’m going to need a second page) and give you tiny blanks to explain what your child can’t do or has trouble with. Um. . let me tell you what he CAN do and you just assume he struggles with the rest.

Seriously. The little man qualifies as profoundly disabled; those forms aren’t written for us.

That being said, the special ed coordinator seemed friendly and – more than anything – I’m thrilled to be getting this process started. The next meeting will involve some actual discussion about eligibility, placements, and needs.

I’ll keep you updated!

Mr. Tacky: Super-Dad, Concert-Goer, Jerky-Eater

According to Facebook, I deserve Dad of the Year award. I’m not 100% sure that this is true, but I think something is in order.

You see, I took my daughter to Dallas to see Ariana Grande in concert. Just me and her. This involved a five hour drive, an overnight stay, and of course many, many screaming teen and pre-teen girls. I enjoy Ariana Grande’s music, but I’m not a “fan” by any means.

I’ll focus on the concert, but let me say first that downtown Dallas has improved since we last visited five or so years ago. The area was clean and felt safe. People now live in the area, not just the homeless, and it honestly just felt nicer.

We arrived at the concert pretty early. (The tech nerd in me was excited. I got to use TicketMaster’s Passbook feature, which kept copies of my tickets on my iPhone. It was cool not to have to keep up with paper copies.)

Arena
When we first went in, I noticed a lot of girls with light-up cat ear headbands (apparently this is an Ariana Grande thing?). I asked the first guy I saw about the cat ears and he told me a pair was $40! I laughed and we walked away. No way am I spending $40 for light up cat ears she’ll only wear once. [Yes. She did end up with a pair of cat ears. Whilst purchasing an over-priced t-shirt, I heard that the cat ears not only light up but sync to your phone and blink in rhythm to the show on stage. Again, I’m a tech nerd . . . so yeah, she got some damn ears.]

We were hungry, so we got some snacks and went to find our seats. Much to my surprise, our seats were AWESOME. We were in section 119, which was just to the left of the stage, only 15 or so rows from the floor. I was very impressed with how close we were considering the relatively low price of the tickets.

View of Stage
The first opening act came out; a DJ named Cashmere Cat. He is an up-and-coming artist who’s working with lots of rappers and, of course, Ariana Grande. He played his own music and remixed some other songs. I enjoyed it, honestly. I really enjoy electronic music, so this was cool to me. I think I am the only person in the building that liked it though. No one else was paying attention, even my kiddo.

After he left the stage and the lights came back up, I tried to get my kid to take a selfie with me. My daughter doesn’t take selfies. She’s 12. I just don’t get it.

The next act up was Rixton. They sing “Me and My Broken Heart” and a few other songs that I recognized. (It reminded me of when we saw Maroon 5 by accident just as they were becoming popular.) These ::ahem:: kids were really really great. We were both standing, singing, taking pictures and videos with our phones. The lead singer was really funny and interacting with the crowd. It was fun. Knowing what I know now, I wish we had been at a Rixton concert. They played for nearly an hour and it went by very quickly.Rixton

After another wait, the Ariana Grande concert actually began. Lots of screaming. Lots of bright lights and fireworks. Lots of meh. My kid loved it, let me say. She was excited standing and singing the whole time. She asked me to take pictures and videos for her . . . and I mostly just sat there and watched.

Here are some things I noticed:

-Almost all parents and adults over 20ish were sitting down with screaming girls beside them.

-There were costume changes between each song, leading to long pauses in the show.

-There was very little interaction with the crowd.

-The rap verses were done pretty well! They were recorded and played on the big screen behind her and produced to match the style of the other visuals of the songs. Though I will say, they turned the fog machines on during Iggy Azalea’s rap so you couldn’t see her face. Iggy Iggs! Haha!

-Over choreography. Dancers. Everywhere. Muscles and butt cheeks. And confetti. Shit tons on confetti.

-There was no encore. Once the show was over, it was over. GTFO!


I enjoyed the show, overall. Like I said, if it had been only Rixton, I would have been happy as well. The Ariana Grande part was a treat for my daughter.

The concert ended around 11:00pm and we headed to the parking lot. On the way, we saw a bootleg T-shirt seller get arrested and sat in the parking lot for a good 45 minutes waiting on traffic to let us out.

The next morning we had breakfast at the hotel and had the most awesome waiter named Philippe with an almost comical accent – think Lumiere from Beauty and the Beast serving pancakes. We took a walk down to Dealey Plaza before getting ready for the drive home.

The last thing we did before leaving Dallas? Visited the Beef Jerky Outlet! This made up for any shortcomings of the concert as the $30 worth of jerky I purchased was amazing.

Giant EyeballRandom thoughts and junk:

Beef Jerky Outlet! Rocks.

Giant Eyeball!

-The Adolphus Hotel in Dallas. Cool old place! Wish we’d have been in one of the updated rooms though.

-No late night room service?! Seriously! Who stops serving room service at 10:30?

Tiny hamburgers are tiny (and delicious)

-Aaaaaand . . . my odometer finally hit 80085. Boobs. Heh.

Tween Parenting 101

This is what you are trying to avoid.
This is what you are trying to avoid.

My daughter is twelve and will soon leave the tween stage behind (although I’d argue that thirteen fits more as “tween” than “teen”). I’ve already written about parenting a tween once, but will revisit the topic and go into a little more depth today.

For some reason, parents (moms, especially) appear to be more terrified of the tween stage than the teen stage. On one hand, I get it; this is the first time when you look at your little kid and see glimpses of a walking-talking-adult. One day you kid is playing with toys and the next they are putting on makeup, complaining about their clothes, or spending way too much time in front of the mirror in the morning. Then they go right back to the toys.

On the other hand, I’m not going to pretend that the teen stage isn’t the scarier of the two. I mean . . . come on, I was teen once. I know what happens.

Parents who think the tween stage is worse probably mean it is worse for them. You lose your baby. You probably start to spend less time together, stop playing silly games, and end up regulated to walk behind your kid and her friends at the mall. You adjust to it and find new ways of bonding or spending time together, but tween is decidedly the end of your baby. The teen stage on the other hand, is worse for the kid. Sure, they might hate you in that annoying adolescent way. They might rebel and you might struggle to find the right path. But overall, they are the ones in the hot seat here. This is when stuff really matters and when what happens can have a drastic effect on their future, good or bad.

So let’s get to it.

Managing expectations
I touched on this in my last post, but it is worth mentioning again (and – I would argue – a very important part of parenting in general). Your sweet angel probably isn’t going to want to wear that Disney dress or themed smocked overalls. Get over it. You probably wouldn’t want to wear it either – you’ll notice they don’t really have a lot of that in adult sizes.

Think about what you really want from your relationship with your kids and what you want to provide them. If you get hung up on trying to postpone adolescence or to create a mini-me, you might miss your chance to plant those seeds.

Finding new connections
Okay, so you can’t [insert stereotypically parent/kid activity here] anymore. So what? Find something else you can relate to in your kid’s growing interests or search for something new the two of you can appreciate together. My husband easily connected with our daughter over computer games and their tween relationship is all the better for it. It might not seem like much, but approaching your child in this new “mature” way is a great transition of your relationship. Even something as simple reading a new book series, shopping for shoes, cooking, or decorating a bedroom can reopen communication with a reluctant tween. It takes it from a basic “mom is playing with me” to “mom and I love to do this together.”

Loosening the reins
Now is the time to start letting you child take control of some things. Give them responsibility for more than taking the trash out and keeping their room clean. I’m talking bigger decisions here – keeping up with homework on their own, planning outings and projects on their own, maybe buying some of their own things if you have a good allowance system (we do not). If you don’t start doing this incrementally now, you will end up with a teenager you don’t trust to handle life responsibly and will release a woefully unprepared adult out into the world.

Setting boundaries
Yes, we all know about setting boundaries for our kids – and that still applies here – but I’m talking about boundaries for you. Say you are loosening the reins by letting your child take an active role in her purchases. This is great; you get to teach her money management and prioritization. But don’t get too mixed up and let her into adult conversations about financial issues or stress. See, you jumped over a boundary there. That is just an example, but you can imagine how this might apply to many situations. She might be getting older, but your kid is not your friend. She still needs to be parented even if she is thriving with her newfound responsibly.

Taking time to teach
In my opinion, the tween stage is a great time to teach your kids how to deal with their emotions. They are just now starting to deal with a whole bunch of hormones and mood swings, but they still enjoy talking with you and won’t just shut you down like a sullen teen might. Use that to your advantage! Model good stress relief techniques, anger management, and appropriate emotional response. If you are lucky, some of this will stick when their minds become invaded by little teenage hormone bugs. My kid has a temper, so we work on counting-to-ten type of techniques now when consequences are very low. It will pay off in the end.

And remember: Your kid is crazy. So is mine.
Sometimes they are downright mean, but everybody goes through it and have for years.
You’ll survive.

10 Ways Tweens Are Like Gremlins = next post?
Maybe my next post should be “10 Ways Tweens Are Like Gremlins.”

Adventures in the System

A little background for new readers since I haven’t written about this in a while: Our five-year-old son is disabled; he has cerebral palsy. We deal with “the system” a lot to get him all the services he qualifies for. Also, as part of our adoption agreement, he has been allowed to stay on Medicaid regardless of our income. That brings another layer of red-tape challenges. I’m not thrilled with the system, but also recognize the many hurdles its employees must deal with. I try to be understanding; sometimes it is hard.

So, now on to today’s gripe session.

Last Thursday, we got a notice in our mail box informing us of a certified letter from our local DHS waiting at the post office. Due to work schedules, the holiday, and a flu-like sickness invading the household, we weren’t able to retrieve the special letter until Tuesday.

It turns out the letter was sent to notify us that DHS, unable to reach us by phone, would be declaring our account inactive if we did not respond by 8/8/14. Yes, 8/8/14; they couldn’t even take the time to update the form letter. Having not received a call from DHS is many months [typical], we were fairly perplexed and got in touch asap.

The assistant we spoke to assured us that the caseworker likely just had some incorrect contact information and we could easily get it straightened out. I would totally believe this. Except – we have not moved since adopting the little man, they have three separate phone numbers for us (home and two mobile, maybe work too), and they clearly knew our address. Would it have killed them to send a letter prior to threatening to deactivate our case? Seriously. Take one extra minute to try and help the people you are supposed to be helping.

Here are a few things I think are far more likely – 1) they never called at all; 2) they only called once, but didn’t leave a message; 3) the caseworker called an incorrect phone number, but never bothered to check our paperwork to see if it was correct or other ways to reach us.

Number 3 really stands out as the winner considering everything I have learned during our five years in the system. We have Vonage, so phone calls to our home actually show up on my husband’s cell. We haven’t seen anything recently from DHS, but I suppose it is possible they don’t show up in caller id as a government agency. Or they show up as something strange, like Hewlett Packard.*

This all reminds me very much of the time we had a home study scheduled and the lady coming to do it didn’t realize we were in another county until 15 minutes prior. Like, she didn’t even pay attention to the address until she had to get directions. Even if we had lived in her same town, she would have been late to the meeting. Instead, we were on our way home early for something that wasn’t even going to happen. Then we had to start all over because our paperwork had been in the wrong county the entire time.

Look, I’ve seen the inside of the system. I know that so many of our government workers are underpaid and overworked. I know that many of them started out as hopeful people only to become jaded over the years at a system they can’t change and families they can’t help. Or even worse, families that don’t want to be helped. I know they have watched children suffer because of government inaction while other suffer because of government overreach. I get it. But it is hard to remain understanding when parents on my end have to struggle so much just to get anything done.

2cohdgx
*Somewhere along the line our state DHS acquired a ton of old Hewlett Packard envelopes. More power to them; I’m happy to see a state agency trying to save money. They don’t even bother to put a sticker over the HP information though. Every so often, I get a letter that appears to be from HP reminding me of the well child visits my son is eligible for. Now, the stuff that comes in these envelopes isn’t usually important – more informational stuff trying to remind parents who might not otherwise be inclined to take advantage of their services – but once it was something important that I needed to follow-up on. Who knows how many I tossed before realizing it wasn’t HP junk mail.

To pump or not to pump? Baclofen is the question.

No, this post is not about breastfeeding. This isn’t that kind of blog.

The little man had a consult with a neurosurgeon last week about the possibility of implanting a Baclofen pump. I am wholly confused and undecided about this.

First, what is a Baclofen pump? Baclofen is the muscle relaxer the little man takes everyday to help with his spasticity. He takes it three times a day and it has to be refrigerated – not exactly the most-friendly medicine. If he doesn’t get his Baclofen, his limbs are tighter and he has more difficultly maneuvering, especially with his hands. A Baclofen pump is implanted into the abdomen and delivers the medicine straight into the spine in an area called the intrathecal space. Taking the medicine this way eliminates the regular muscle relaxer side effects, can possibly make the dose smaller, and, hopefully, makes the medicine more effective.

There are a lot of positives that can come with the pump. Aside from the possibility of greater muscle benefit for the little man, it would mean no longer being tied to a three-times-daily medicine and no longer having to plan days around doses or pack an appropriate insulated lunchbox. The little man’s last daily medicine would only have to be dealt with every few months when the pump is refilled (through a port). The hope is that the pump would greatly improve his muscle spasms. Since the spasms are a huge reason he is unable to sleep through a night, the pump could mean we finally get to have a normal sleeping situation. That would make a huge difference to all whole family.

There are also a lot of negatives. Since the medicine is being delivered straight to the spine, overdose is common as the new – typically lower – dose is being settled on. This would happen in the hospital, of course, but it is still a concern. Then there is just putting the little man through another surgery. Doing the test for the pump alone was horrible for our family; the little man had a spinal headache for a week after and it was unlike anything I had ever experienced. I dread willingly subjecting him to that possibility again. The pump only lasts for five years or so and will have to be replaced (just the pump though, not the catheter into the spine). Do I want to sign my son up for a lifetime of surgeries?

And of course, there is the unknown. The little man is tall and thin; will there be enough room for the pump? If we wait will he just get taller and thinner leaving even less room? What will his recovery period be like? Three weeks until normal activity for a five year old is pretty daunting.

The little man’s neurologist, his physical therapist at the hospital, and the neurosurgeon all think he is a good candidate. I must add, the neurosurgeon was wonderful. She answered all of our questions and didn’t pressure us to make any decisions during our consultation. But at this point, we just don’t know anyone who has first-hand experience with the pump.

Our next move is to meet with his physical and occupational therapists at school – the regular ladies who see him three times a week – and get their detailed opinions and information on any experiences they have had with the pump. I’ll be scouring the internet for opinions, of course, but most of the stuff I found in my initial looking several months ago had to do with older people. I really want to find some people talking about the pump in young children. After that, we’ll talk with his regular pediatrician and his doctor at the hospital’s medical home clinic. Both are tell-it-like-it-is doctors with excellent bedside manner.

Anyone out there have experience with the pump – good or bad? I’d love to hear your story.