Thursday, January 29, 2015


I must admit that the other day I violated my mantra of "never underestimating." Juliana has been wanting to play with jigsaw puzzles.... and, well... I thought that the play was going to involve strewing the pieces throughout the playroom. I was wrong in more ways than one.

It's really neat to see her work on these so intently. Calvin used to love these little puzzles, and I'm so happy to see them being used again.

How to Wean from a Feeding Tube

Feeding tubes are a distant memory - a memory I'd just as soon forget. But I still occasionally receive emails asking for tube weaning advice. At least as a couple of years ago, there is precious little information to be found on the internet. Even the professionals, at least in my experience, don't really know what to do. I remember eagerly taking Juliana to the pediatrician, to the GI, to the occupational therapist thinking that surely one of them was going to help me solve this problem. At the end of the day, they didn't. I was on my own. That knowledge is simultaneously terrifying and empowering. If you're reading this and you're in this scenario, I know that likely you are already terrified! Please turn that feeling on its head and choose to feel empowered instead. There is a lot you can do! And ultimately, YOU are the person who will help your child tube wean.

Tube weaning is often a complex song and dance. There are many different reasons why a baby might have a feeding tube, and I think that most babies have a tube for more than one reason. I can't address all scenarios, but I can tell you about the factors that influenced Juliana's wean.

Diet. I always mention this first because I think it's a huge factor in a majority of tube-fed babies and kids. I don't know when Juliana would have weaned if I hadn't taken drastic measures with her diet. As soon as I began to pull problem foods from her diet (problems foods included elemental formula, which is supposed to be easily digested by anyone) her reflux was gone. She was happy. She started sleeping really well. She stopped pooping all the time. She became receptive to my efforts to desensitize her mouth.

Is your child's diet impacting their desire to eat? Some questions to ask yourself... Does it seem like he/she is ever in pain? Does he reflux? Has your child had antibiotics, especially as an infant? Has he had thrush? Does he have normal poop, on a normal (daily) schedule?

Fortunately there's a lot of dietary intervention that can be done even with an infant. Evaluate *everything* that your child is ingesting, including medications. There are many probiotic options, including one that is cultured on breast milk.

Ties. Tongue tie and lip tie can both affect feeding. I haven't heard of a scenario where this is the ultimate cause of the feeding issue, but I think it's worth considering. I did have Juliana's ties revised when she was put under for ear tubes. Revision might be tricky in a child with extreme oral aversion.

Happy Mouth. Keep the mouth happy. If the mouth is not happy, get it back to a happy place! I used to desensitize Juliana's mouth with brushing and rubbing my finger along her gums. The mouth is a vulnerable part of the body, so be sure that you do this gently. Perhaps ask someone to try the same exercise on your mouth, so you can get an idea of how sensitive the area is and how much trust and relaxation needs to be involved. See my post on Oral Aversion.

Stay Calm. This is hard. This is probably not your natural inclination. But it's really important to say absolutely calm around anything to do with feeding or therapy. Babies are smart and will pick up on it. Let your baby feel at ease. Never force. As I really became immersed in Juliana's world I began to find that my calm demeanor had enormous impact on her. Don't underestimate it.

Play Picnics. In addition to diet, I credit a lot of our success to the Graz style of tube weaning. We did a younger kid version of a play picnic (please read this, a great link with lots of info), which mostly involved Juliana holding a spoon and feeding me as I fed her. I think play picnics are genius and a very useful tool for an older baby/toddler/child.

Distract. When we began to wean, I often used the TV to distract Juliana. We would sit on the couch and I would feed her. She also ate very well at crowded or stimulating places. 

You are the Expert. You know your child best. Not the doctor who spends ten minutes with you. Not the therapist who sees you briefly once a week. These people work for you. They may have good advice... or they may not. Critically evaluate everything they say and never be slow when it comes to seeking a second (or third, etc.) opinion.

The days with a feeding tube - the NG tube in particular - were the hardest days of my life. I wanted so badly to see Juliana's little face unencumbered by tubes and tape. I wanted to not have to insert it. I wanted to connect with her by feeding her. I felt so overwhelmed by the task in front of me: figuring out her allergies, getting her past oral aversion, teaching her how to eat, letting her feel the hunger/satiation cycle. It felt insurmountable. But we took things a day at a time - the only way to live life, really - and those encounters added up.

For some more resources, check out this post.

Monday, September 8, 2014


Juliana's baby brother was born eight days before her third birthday. I wasn't entirely sure how I would manage the unique needs of three children, but I was pretty sure that I would figure it out in time. I also told myself repeatedly that a healthy newborn is an easy newborn. If I wasn't having to insert an NG tube down his nose, then how hard could it be, really? And so it was that I was completely relaxed - almost to a fault - about adding another child to our family.

I underestimated a little bit. It is much, much, much easier to have a healthy newborn, but it is still a hard transition. I forgot that in the week following birth my body feels like it's been run over by a truck. I forgot that my older kids can only go so long without me before they start to crack. I forgot that my husband would go back to work before I was ready. I forgot that even an "easy" baby has many needs.

Despite being pulled in three directions, despite having only one child who can walk, and despite a full therapy schedule, we've really transitioned very well. For the first month or so I had helpers to take Juliana to therapy and Calvin to his homeschool class (thanks mom and dad!). After that I was itching to get back to our routine. It took some time to figure out, and in the beginning there were places that I absolutely could not go unless David was also with us. I'm happy to say that now we can go almost anywhere!

When I was pregnant with Juliana, and later after she was born, I was always concerned about how Calvin was handling everything. After all it seemed like a big deal to go from only child to sibling, particularity when we went from "normality" to a demanding therapy/doctor schedule. It's easy to forget now, but at the time Calvin was a major impetus at striving for normality. He kept me going through some very difficult days. So I was always extremely mindful of him and how he was handling the stress that our family was experiencing.

This time around? Crazily enough, it never even occurred to me that Juliana might have trouble transitioning. My only thought was that she likes babies. And I think that subconsciously I thought that she already had a sibling, so what's the big deal? Let's just say that only now, after having three children, do I finally understand the effects of birth order! Calvin was enamored with his brother from the beginning and has been almost entirely unaffected by the change. Juliana went through a month or two where she was very clingy but now she too has mostly adapted. The one exception: she still likes it when "Daddy [or anyone] holds Charlie, Mommy holds Nany" (her nickname for herself, pronounced "nah-nee"). Despite being kicked out of her position in the family, Juliana is very fond of Charlie. She likes to hold him and hug him and I have to keep an eye on her to make sure that she is not too overzealous in her love. She is a good big sister.

Another huge difference this time around is my expectations of Juliana versus my expectations of Calvin when he was a similar age. When Juliana was a baby, I remember holding Calvin when I could since he also was still my baby (I even mentioned this here). It's the total opposite with Juliana, I am always making her walk because she needs the practice. This discrepancy occurred to me just a few weeks ago and now I'm trying to make up for it in other ways. Even in other areas, I feel that David and I have very high expectations of Juliana and I'm just not sure that we had the same expectations with Calvin. I don't think this is a bad thing at all - in a lot of ways she can meet or exceed our expectations and I think that's really important given the low expectations that can come with a diagnosis such as hers. Still, I do have to be very mindful of not continually pushing her. I have to remind myself that she is just three - still pretty little, even if she has already accomplished many great things in her lifetime. Sometimes she wants to be carried and that's what I need to do.

I am really thrilled that Juliana has two brothers to grow up with, to play with, to learn with. And I'm so thankful that they have her, too... despite her birth order, she is the bossy one and she helps keep these boys in line.

Thursday, June 5, 2014

Delayed Walking

Early last year I had hoped that Juliana would begin walking in a few months time. I was hopeful that she would walk by summer. I was optimistic that it would probably happen by autumn, at least. And if not then, then surely by the end of the year. I continued to revise my prediction: definitely by her third birthday, right?!? But time has marched on and while she has made tons of progress, she still wasn't walking independently. Slowly I've moved towards acceptance of things I cannot change and I've come to the point where I am not really bothered by the lack of walking. Over the past three years I've realized just how hard it must be to have extremely low muscle tone. I still want to push her but I've also become more empathetic about her physical challenges. 

As you might expect, life is a little more difficult with a three year-old who doesn't walk independently. At home Juliana is completely independent and can get anywhere she wants; it's everywhere else that is a problem. For me one of the biggest challenges is that I can't set her lose to play outside. Just this morning I wished that I could watch the kids play in the yard while I sat on the sidelines with my coffee. Truthfully I could do that... but going outside is a big event that involves wearing old clothing (sometimes with "knee pads" - aka cotton nursing pads - stuffed in her pants), watching for crawling hazards (which of course are many) and then lots of washing up afterwards (and usually changing clothes). It isn't quite as simple as opening the door and going outside. But I try to give her every opportunity for normalcy, so we do it anyway despite the wake of ruined pants left behind.

I have devised ways to get us through most any day. I don't merely want to transport Juliana from place to place, I also want to give her constant opportunity to improve her skills. I rarely carry her, even when it would be easier to do so. This is more difficult now that she has a new sibling on the scene, but we manage. I can hold Charlie in one arm and support Juliana's walking with the other, which is what I do when encouraging Juliana to walk around the house. When we go out I usually have Charlie in a carrier so that I can support Juliana walking. When we absolutely have to, I'm able to carry both kids at the same time. For the most part Juliana walks at every opportunity. She was resistant to this idea initially but over the past few months she has really come around and now she usually wants to walk.

Yet perhaps the biggest challenge of all is the isolation that comes from having a child who does not walk. It's definitely not something I ever considered before I entered into the land of disability. There are certain places that Juliana cannot go. For instance, I'll let her explore a playground on her own if it is relatively empty. But if there is more that one or two other kids, forget it - they'll eventually step on her fingers and that's just not worth it. There have been numerous opportunities that we've turned down because it would be too much for me to juggle two non-walking children. There have been a few other times when we've left Juliana behind so that I could do something with Calvin.... something she could participate in too, if only she was walking. Disability is isolating. Food allergies, speech delay, gross motor delay, even sensory issues - all isolating. Isolating for her certainly, and at times isolating for all of us. It's something that you never stop to think about until you are affected by it. Sometimes it makes me mad, sometimes it makes me sad, but mostly I am just used to it by now.

Things are changing here though. The other day Juliana took her first real, unaided steps. This was just days after I had once again pushed back my timeline for walking expectations. For awhile I had been hoping that she would walk by late summer/early fall, as we're thinking about the possibility of some time in preschool. A few days ago I was trying to make peace with the possibility that she might not walk until the end of the year. And now... it looks like late summer walking might be totally within reach. I am excited, but mostly I just can't believe it. This has been a long time coming and now it seems surreal. I still remember trying desperately to get her to bear weight on her legs - and her desperately refusing. Now she's walking!

Sunday, March 2, 2014

Juliana - Three Years Old

Happy birthday to my girl!

Juliana brings us great joy every single day. She is truly a delight. She's hilarious and silly and makes us laugh on a continual basis. She's enthusiastic. She is sweet. She is playful. She is also demanding, but that goes with the two/three year old territory. She knows what she wants and she sets about to get it. She has great perseverance. She tries to be independent. She loves to learn.

She's a smart cookie. She doesn't miss a beat. She can count to around twenty - Calvin is working on teaching her to count to 100. She's known the alphabet forever and has even known basic phonics for quite some time. She knows a number of sight words though we haven't been quite so focused on that lately. She loves to read books and really enjoys our trips to the library. Her current favorites are any Franklin the Turtle books and the James Marshall books such as Goldilocks.

Whenever a therapist or doctor asks about my concerns for Juliana, I can honestly only think of two: walking and talking. Those two things are both works in progress. They are both things that will absolutely come in their own time. While she's not walking yet she is also amazingly much stronger than she was even just six months ago. Speech is a different matter, she is definitely talking and also has some complex sentences. The problem here is with articulation more than anything. There are still times when we know that she is telling us something but we can't figure out what that is. Beyond these two issues, I truly do not have concerns for her development. I don't worry about her cognitive development (which tests as being at a typical level) or her social development or her self-help skills. I think that overall she will manage just fine in those areas. She may very well need extra help but they are not concerns that keep me up at night.

She is also pretty healthy these days. A few small changes in her diet and I've seen some improvements in some long standing issues such as eczema. I've also seen some, though not all, of her stimming decrease. She still follows GAPS and I believe we are still seeing major benefits from it. How long she will stick to GAPS is really anyone's guess. She no longer has GI issues or obvious food intolerances so the results we are now getting are more specific to her overall health, immunity and the protection of her brain.

Despite all that good news we do have one major possible issue: her hearing. She has a mild hearing loss in one ear and a mild/moderate loss in the other. We've known this for almost two years now. However just recently our audiologist has begun to push for hearing aids. I reviewed the hearing test results with our speech pathologist and there is definitely a correlation between sounds she cannot hear well and sounds she can not say well and she may really benefit from hearing aids. The speech articulation issues I mentioned? Maybe the hearing aids would clear that up. The timing for this recommendation has been rather awkward, though, due to the recommendation being made while I was in the third trimester of pregnancy. First she will need new ear tubes and then we'll repeat hearing tests and then we'll have a hearing aid assessment. Unfortunately these procedures had to be delayed while we waited for the birth of Juliana's new brother.

Three years in and this is where we are! We are all happy with this place. Oh, things could be a lot easier - carrying around a 30+lb toddler when you're 40 weeks pregnant is not always fun (but does make for good exercise). Not walking is definitely the most significant challenge that we face for the time being - we have three kids and as of right now only one can walk! We hope that we are nearing the end of this stage soon.

We are super thankful for our little girl. We still have a lot of work ahead of us, but overall it's hard to remember the days when she was so sick and her future seemed so uncertain.

Wednesday, July 17, 2013

Siblings: An Update

I've been meaning to provide a sibling update for awhile. It was a year ago that I wrote about the challenges faced by the sibling of the child with special needs.

I don't know too much how other people choose to broach the topic of special needs with their other children. For our family it is a topic we decided not to address at all, at least for the time being. It was quite an unconscious decision at first - after all, Calvin was only two and a half when Juliana was born and there wasn't much point in trying to explain anything. But as the years have passed this has become more of a conscious choice. Why should I point out any of Juliana's differences? Calvin sees her purely - for who she really is. Why should I say anything to change that?

So I have not spoken to him about special needs or developmental delays. We've never told him that she has Kabuki syndrome. It's not that we hide this information, and he most certainly has overhead our conversations. But I have not gone out of my way to provide information. Calvin is too young to really remember life before Juliana was born, and that means he is also too young to remember a life before we spent hours each week running between therapy and doctor visits.

Recently Calvin and I were playing a role-reversal game and I asked him why we went to therapy. "We go to therapy so that Juliana can learn how to walk and talk" he said. Then I asked (and remember here that I am playing Calvin) "Why don't I go to therapy too?" I have often wondered what he thinks about some of the slightly older kids we see in therapy. Calvin responded "You do go to therapy, you stay with me!" So there you have it: no need to over explain things to young children.

However as Calvin is approaching his fifth birthday I've been realizing that soon things will change. He wants to know why Juliana is doing a specific activity and I have to tell him "that's because her eyes aren't straight." He wants to know why Juliana has to have blood drawn and I have to tell him "it's because she's a little bit sick." We recently had her fitted for SMOs and I explained to him that these would help her learn to walk. Again, I am keeping it simple and I'm trying not to burden him with too much information.

I feel very strongly that there has been an orchestrated plan in the birth order and the personalities of my children. I don't think I could have possibly asked for a better big brother for Juliana. He puts up with a lot: long hours in waiting rooms and a younger sister who often has demanded much attention. Despite that he is very kind to her, very patient with her, and he loves her dearly. It took a really long time for her to reciprocate those feelings. I felt like I was holding my breath: was there even going to be any sibling relationship? And then it happened and it happened beautifully. They like to play together, they like to be together, and they have very, very few negative interactions. Calvin is a great helper and he loves to show her how to do things. He is often very helpful in this regard when I am trying to do various therapeutic activities with Juliana.

At dinner tonight Calvin called across the table "Juliana, I love you!" I guess we're doing something right.

Monday, May 13, 2013

The ABCs of Neuroplasticity

Juliana has mastered the ABCs. This was taken right before bedtime and she loses interest in our "game" after a few minutes, so you'll just have to take my word for it: she knows all of her letters.

As if that weren't exciting enough, it's also exciting that she is repeating the name of each letter, that she can see the letters well enough to differentiate between them, AND that she can hear the sound clearly enough to know which letter I am asking her to find. 

We honestly didn't spend a lot of time drilling her prior to this pop quiz. In fact I am not sure whether I should feel chagrined over our lack of preparation (ABCs have been on my list of things to do, but we rarely got around to it) or if I should just feel amazed that she learned so quickly with such little guidance from us. I would estimate that we did the ABC flashcards approximately a dozen times, maybe a few more. She really loves these flashcards and pays apt attention to them. She also began to point to letters and wait for us to name them. 

This ABC knowledge isn't just a parlor trick to impress people; this kind of exercise forms new synapses and physically changes the brain. This is important because "processes that are not used or are inhibited during their critical period will fail to develop normally later on in life" (1). It is experience that determines which synapses will be strengthened and which will be pruned; the connections that are activated most frequently will be preserved (2). 

Time is of the essence if you want to minimize pruning. Early learning is better than later learning because the younger the child, the more plastic (i.e. moldable) the brain. Dr. Abdeldayem, Professor of Pediatric Neurology, describes brain plasticity as "the capability of the brain to alter its functional organization as a result of experience... plasticity includes the brain's capacity to be shaped or molded by experience, the capacity to learn and remember, and the ability to reorganize and recover after injury." Why can young children easily pick up a second language (and sound like a native speaker in the process)? Because their brain is so plastic. It is easy for a young child to learn. Neuroplasticity has a clear age-dependent determinant (2). This is hardly a disputed fact. Early intervention programs exist precisely because the brain of a young child is so plastic that it can be changed at an early age. Intervening later in life is far more difficult (just ask any therapist!). 

Children naturally learn easily and what's more, they enjoy the process. We can use this to their advantage, helping them learn new things that will literally grow their brain and serve them for the rest of their lives. Of course this is great for any child, but for the child with special needs it is simply amazing. 

I feel like Juliana lost a lot of time in this critical window because of all the health challenges she faced in her first year of life. However I am also confident that we've slowly moved from one side of the spectrum to the other. We still have more time - her brain is still plastic! I've been pulling from various resources and putting together a new list of daily exercises. Fire away, neurons!

(2) Brain Plasticity - fascinating slideshow