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.