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Things that are hard to hear

Raya saw a new specialist today. It was an appointment that I had put off for a year, mostly because I didn't really see the point in going but also because I felt like we already had enough doctors to see & didn't really want to add another one. In September when she had her annual CP screening clinic appointment, the very kind and wonderful NP that we saw suggested again that I make the appointment. After talking with a few of my friends whose kiddos have seen this same doctor, I decided to go ahead and do it.

The doctor we saw today was a neurodevelopmental pediatrician. The first thing she asked me was what my goals were for our visit. I must have had a blank, puzzled look on my face because she then said, "Or are you just here because someone told you to come?" Um, yep. That would be it. I told her I just would like to get any insights she could give me on why Raya is the way she is and what we can do to help her be as happy/successful/functional/productive as possible.

Right from the beginning, Raya was just as sweet and pleasant as could be. (Of course the doctor probably didn't hear her yelling at me to unbuckle her so she could get out of the stroller and play with puzzles in the waiting room.) As soon as the doctor came to the waiting room to get us, Raya turned on the charm. She even held the doctor's hand when she walked back to the exam room. She's never done that with ANY of her other doctors, even the ones she likes. She really does know when to show off and make Mommy look bad.

She asked me a lot of questions about Raya's medical history, which she had obviously already read up on. She asked a few questions about our other kids, Donny and me, and both of our families. Meanwhile, Raya and Kaida were playing with toys and Raya was climbing on everything and jumping off of things. Then she started stacking blocks about 10 high and totally showing off all her big girl skills that I didn't know she had. After we had finished going over Raya's history, the doctor got out a flip chart book and started asking Raya questions about all the pictures in the book. Things like "Raya, what is that girl doing?" "Find the pencil." "Which person is running?" etc. Raya did really well with all of that so she moved on to more abstract things like, "Find something you would use with a coloring book." (she pointed to a pair of glasses, not the box of crayons) She had pages with different sizes of circles on them and asked Raya to find the smallest and the largest, which she was able to do. I didn't think she'd know that. (apparently I underestimate my child. ask me how good that makes me feel.)
(the lady hiding behind the filing cabinet is the neonatologist that was observing, by the way)

A lot of the pages had letters and numbers, and Raya doesn't have a CLUE when it comes to any of that. This child has never sat still long enough to even care what the names of the letters or numbers are. However, when the doctor asked her to count the teddy bears on the page, she did it. She asked her to count the squirrels, and Raya accurately pointed to each squirrel and counted to 5. Another thing I didn't think she'd be able to do because she's not consistent with her counting. One page had a picture of a lamp on it and when the doctor asked Raya what it was, she was quiet for a while and then said, "I don't know WHAT it is!" I was laughing quietly on the inside because I'm pretty sure Raya really doesn't have a clue what a lamp is. We don't have any lamps, let alone any that look like the one in that picture. :) The doctor asked Raya if it was a car and Raya said yes. Then she asked her, "If that's a car, then where are the people going to sit?" Raya said with a little bit of sass, "In the car." The other funny one was when she was giving clues and trying to get Raya to say "milk". She said, "Raya, what's something that comes from cows, is white, and you drink it?" That made me laugh because Raya has never really been able to have milk and is now allergic to it. :)

There were a few times when Raya would say something and the doctor would repeat what she thought Raya had said, only it wasn't what she really said. Her speech has improved recently and I'm convinced it's directly related to her gut function. I know that sounds odd but they are both very closely tied to her sensory processing disorder and when one thing is off, so is everything else. When she got done with her assessment and scored it, she said, "Well, Raya is average on everything. I'm happy that she was able to get into preschool because she clearly has some sensory issues that need to be addressed, but she's doing very well." (cue insecurity over whether we should be doing everything we're doing...)

Anyway, back to the title of the post. I've long since lost track of the number of appointments I've taken Raya to but no matter how many we go to, I still get nervous before every single one. Especially when it's a new one that we haven't seen before, as was the case today. I think one reason for that is the fact that I never really know what to expect from the doctors and other health care professionals that we see. One of the hard things for me has always been that because Raya's never been diagnosed with any big unifying diagnosis or a syndrome that ties everything together, I have always felt pressure to demonstrate or prove that she really does have issues. Sometimes we go to appointments (like this one) and the tables are turned and I'm the one that's being told that she has issues. The medical things have always been easier for me to take. Chronic vomiting, ok. Visceral hyperalgesia, ok. Fed through a tube, ok. But throw "behavioral" anything into the equation and I'm not so okay.
One of the first things the doctor brought up when we started talking was dealing with behavioral issues. Then she brought it up again at the end of the appointment. She said (and I know) that Raya is a stubborn kid. (I drove 70 miles for her to be diagnosed as stubborn, ha ha) She then said (which I also realize) that being a stubborn child AND having complex ongoing medical issues is a bad combination. Couldn't agree more. She suggested that I contact the behavioral health department of the company that handles long term care patients and have Raya evaluated by a behavior coach. She said that a behavior coach could give me more insight into how to handle some of the emerging behaviors we're seeing and the things that have been ongoing for a long time. She also said that when a child has had feeding issues for as long as Raya has (and especially some of the traumatic experiences she's had), a lot of dynamics develop that can be difficult to work through, and that a behavior coach could help us learn some different techniques for that.

{gulp} This was where I had to blink a few extra times to keep any tears from squeaking out. The word "behavioral" is really hard to hear. I imagine I'm not the only mother who hears that their child has a behavioral problem and can't NOT take that to mean that she's done something wrong in order to create the behavioral problem. You start to replay everything in your mind and try to figure out where you went wrong, even if logically you know that you can't take the blame, or at least not all of it. She's had a lot of traumatic medical-related experiences in her life, and that's not over yet. Her brain doesn't process things the same way a "typical" child's brain processes things. She is VERY strong-willed and VERY stubborn. So yes, like any parent I've probably let a few things slide that I shouldn't have. I've probably screwed up because let's face it, every parent screws up. I've got 3 other kids who, so far, have turned out pretty darn good if I don't say so myself, so I know I'm a pretty decent mom. The hard part is that even though I've done the best I could to not treat her differently, not coddle her, not spoil her, and not allow "naughty" behavior in spite of HAVING to do things differently because of her medical needs, she is still tough to handle. She is not a naughty kid! She is a good girl who just doesn't always understand what's appropriate behavior and what's not. I feel like I've worked SO much harder with her than I had to with the other kids in every way. EVERYTHING is so much harder with Raya. I feel like NOTHING has ever come easily with her, and I hate that the word "behavioral" implies that I'm not a good mom and that she's not a good kid.

Moving on, she said that another benefit that could come from having a behavioral evaluation would be that Raya could get play therapy that would help her learn to express herself better and to work through some of the emotions she has that are a result of things she's been through. It's kind of hard to imagine a 3 year old having emotions to work through but having been with her in all but 2 of her traumatic medical experiences, I would be surprised if she DIDN'T have lasting emotional scars from some of it. Not to mention the emotional scars of having your parents be part of a lot of the medical trauma, like holding you down for blood draws and IV starts, and putting your NG tube back in. I think play therapy would be great for her so I hope we can make that happen.

The next thing that was hard to hear didn't really bother me until later. I don't remember her exact words, but it was something to the effect of, "You need to know that the feeding issues will take years to overcome." Ouch. It's not anything new to me. I know that. I've known that for a while now. It has sunk in little by little for 3 years now that the feeding tube is not going away anytime soon. When she said it though, I realized that it was the first time anyone has ever said it out loud to me. That stung. I almost let a few tears escape then too but I didn't. I told her that I know the tube is here to stay for a while, that I wish someone had told me from the beginning that I should plan on her having a tube for years (not weeks or months like I initially thought), and that I've made peace with the tube and I'm okay with her having it until she's ready to not have it anymore. Still though, having a doctor of her expertise and background tell me flat out that it will take years to overcome her feeding issues stung. But I'm over it because I already knew that, so I'm saying right now for my own benefit and for the benefit of anyone close to us, Raya will still have the feeding tube in kindergarten. She might even still have it in 2nd grade or 3rd grade or 4th grade, and you know what? THERE'S NOTHING WRONG WITH THAT.

You know what else there's nothing wrong with (according to the neurodevelopmental pediatrician)? Raya is not potty trained. We talked about that too. She did suggest that we incorporate sitting on the toilet into her mid-day and bedtime routine but that it's really not important whether or not she actually goes because she is not ready to potty train yet. Nor would pushing it on her be productive in any way, as is the case with eating. If you push a stubborn child, they will push right back. And children on liquid diets cannot be expected to poop in the potty. 'Nuff said.

The other big issue that we talked about was the difficulty that Raya has with going to sleep. I mentioned to her pediatrician recently that I was concerned about the fact that Raya is usually unable to fall asleep for a nap regardless of how exhausted she is, and that even at night it takes her a long time to fall asleep. She doesn't fight us on going to bed and seems to actually like being in her bed. It's quiet and dark, both of which she thrives in, but she just can't fall asleep. Sometimes she will lay in her bed for an hour or two before she finally falls asleep, and when that happens at naptime, she eventually gets tired of trying to take a nap and wants out. Or poops. Then we have to air the place out. :) Anyway, when I brought it up to the pediatrician, she told me that Raya probably just doesn't need that much sleep, that I shouldn't be letting her take a mid-day nap, and that she wouldn't prescribe a sleep medication if that's what I was asking. (we had already tried melatonin with no change) I wasn't, but her complete lack of support of any kind felt pretty lousy. She obviously wasn't listening to what the problem was either.

I brought it up today with the developmental pediatrician and she said that based on what we had talked about and based on what she'd observed & read in Raya's medical history, she feels like Raya is dealing with some anxiety. She said that with kids like Raya who have good days and bad days, sometimes it's a sensory issue and sometimes it's anxiety. She said the anxiety could definitely be making it difficult for Raya to calm herself and go to sleep. There was a medication mentioned but it's not an anti-anxiety medication or a sleep aid and has very few possible side effects. She said she couldn't prescribe it without checking with neurology and GI first to make sure it wouldn't interfere with anything she's taking now, but that it would be something to look into. It's supposed to help take the edge off on bad days, and I think that sounds like something she could benefit from in addition to the sensory protocols we use with her. I will be researching the medication and asking her other doctors about it ASAP. I'm hoping to make another weighted blanket or at least a lap pad for her to see if that would help too. She hated the blanket I made her when she was about 19 months old so we'll see if she's open to it now that she's a little older. If I get to it. :)

Overall, I felt like it was an informative appointment and it did give me some new directions to go in that I {humbly} think will be beneficial, even if it does involve allowing someone to come into my home and pick apart my parenting and tell me what I should be doing differently. I very much appreciated the way that she was able to explain things without coming across as me being responsible for Raya's problems. She told me that she would be more than happy to see us back again but that she would completely understand us not wanting to add another doctor to the mix. She gave me her email address and said I could email her with any questions, and that she'll get a detailed report written and send it to me so I can check for any corrections that need to be made.

In other news, and going right along with the "things that are hard to hear" theme, Raya's surgery is apparently scheduled for Tuesday. Nobody bothered to inform me of that though, nor did anyone bother to tell me that they had canceled the GI follow up we were scheduled for this morning. On a whim, I called GI yesterday because I hadn't gotten one of their automated reminder phone calls yet and wanted to make sure we were on the schedule. We were not, but evidently we are on the schedule for an endoscopy next Tuesday. In today's mail, there was a new surgery packet from the surgeon's office with our pre-op instructions. I could go on about how irritating this whole situation has been with the complete lack of communication and follow-through, but complaining never helps, even when you're complaining to the people who could have prevented or fixed the problems to begin with so I won't. I'm not looking forward to the procedures because the surgery is going to be painful for her. I'm also not looking forward to it because they were so kind as to schedule it during the week that I have to take my midterms and have all kinds of other things going on, and they didn't bother to call me to make sure that the date worked for me. Oh well, at least it's scheduled and I can start working on what I'm going to do with the other 3 kids that day and how I'm going to study and take midterms with a freshly post-op toddler. They'd better give her some good drugs, that's all I have to say.

So yeah. Today has been a little rough but on the bright side, the weather was absolutely beautiful and we spent some time at the park today in our short sleeve shirts with a nice warm breeze and sunshine. Lovely afternoon to help make up for a somewhat difficult morning.


  1. You are so strong! Raya is so lucky! Emmalynn had a neuro appt today too! Ps that is doctor Allaire! She took care of Emmalynn in the NICU the first month or so...then we switched doctor groups.

  2. Melatonin I'm not 100% sure that's how you spell it. It's what your body produces naturally to sleep. David has a hard time falling asleep and we buy it in gummies. It says for adults to take two, we give him one. The pedatrician told us to. It helps him sleep. We can only find the gummies at one store. I know you can buy it in liquid. But it's all natural. I would check that out and see if you can give that to her. We don't give it to him every night. More on school nights when he needs to get to sleep. It works awesome.

  3. Wow, so much of this post resonates with me I don't even know how to organize this comment. I guess you should take away from me that you aren't alone in all the uncertainty with your kid. The potty training (lack of), long term tube (nobody told me either), "behavioral" (I hadn't even linked this one, but it makes so much sense), stubbornness, medical trauma, difficulty falling asleep, anxiety, several diagnoses that aren't connected, all of these things are a lot for a kid and parent to navigate. You aren't alone. Many of your struggles are different from mine, as are mine from yours, but I know that you are doing the best you can. That's all I am doing. I am not a hero, or any stronger than other mamas, but I am doing all that I can do for my boy. I wish we could talk more, many of our struggles are similar. I love your blog, it has been a huge comfort and help to me.

  4. So much of this resonates with the daily difficulties that I have with my son. Thank so much! The sleep issues, the behavioral, the stubborn child.....thank you!


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