About a Week Ago

We were back in Dr. T’s office for Katie’s annual visit. We had done a lot of preparatory work with Katie for this visit. We had discussed things he might want to do. Things he might need her to do (e.g., have an x-ray taken), and we talked about how she could make it easier for herself and for everyone else (lie still and not fidget so they didn’t have to use a needle in her arm to help her stay still). We knew going in that the news wouldn’t be what any parent would hope for in this situation. We were not going to be told that the hole was closed and she was free to go. We all knew it. The last remaining hole is still there. So we were prepared for the worst.

What we got was both better and worse than we expected. Katie was Katie. She read herself a book while she waited for Dr. T to come in. She felt very sorry for the child in the other room who was screaming and wanted to go let the other kid know that Dr. T is awesome and he doesn’t need to be afraid, but we convinced her that she didn’t need to do that. They checked height, weight, and head circumference. Unsurprisingly, Katie has gained a pound since he saw her last year and approximately one inch. So the growth spurt we were all eagerly anticipating did not occur. Sigh.

When Dr. T came in, he asked if she could read. She looked at him like you’d expect — silly man, I could do that last year. Heck last year, she wrote her own list of requests. This year she didn’t come with any because she knew this was likely a take away appointment rather than a give to her appointment. He asked Katie how her head is and she was up front with him. I still have a hole right here, and she rubbed her fingers over the spot. He wooged her head (imagine someone else rubbing shampoo into your scalp, that’s kind of like what he does). He said it feels a little smaller, doesn’t it? Katie said she thought so, but she knew it wasn’t closed.

And then we started discussing. January or June. He first wanted to see her again in June 2016 so that if we have to do something we could do it after school let’s out and she would be all set to go when school restarts in August. When I reminded him that we homeschool so that’s irrelevant, then he said, well, then I guess we could go with January. And then he said, no, June. Let’s stick with June. And then the blow, whatever minimally invasive procedure might have been on the table for her is now off the table. If the hole doesn’t fill in she will need surgery.

I understand the reasoning. The minimally invasive procedure has an approximate 50% success rate and it takes a year to determine if it has been successful or not. If we did it now, that would be fine, but if we want to wait, doing full blown cranial surgery at age 8 1/2 is not ideal. It’s not ideal for multiple reasons, but the one that likely makes a difference is that it can destroy a girl’s self-image to have her scar revealed for the world to see and lose a substantial amount of hair. Especially for a girl who has been so patient and worked so hard to grow out her hair. Although, speaking of hair we have learned that the reason that Katie rejects buns so strenuously in dance is because setting one up (that will stay while she dances) pulls on her scar and hurts her.

The surgical procedure is deceptively simple. He will reopen the incision (as we now get to call it instead of the scar, since it may soon be an active part of her body again rather than a reminder of past events), peel back her skin and seed the whole with bone fragments from her and from the bone bank. While there, he also wants to shore up her temples because they are sinking, which they should not be doing. He’ll put a plate over the hole and hopefully the whole thing will heal up and grow and that will be the end of it.

Her restrictions remain the same, no sharp sticks, no soccer, and no body weight over her head (so no hanging upside down on the monkey bars for Katie — not that she would, she says the blood rushing to her head feeling hurts her scar, sigh). And now we have a ticking clock.

Katie sees this as a continuation of God’s plan for her. Whatever happens is what is supposed to happen so that other people can learn about her birth defect and learn how all the treatments work. She’s an amazing kid is our Katie. All she asks of all of you is that you lift her in prayer that God’s will be done with her head. So, if you’ve put her on your church’s prayer chain, leave her there. If you haven’t, please feel free to add her. She believes she has come as far as she has through prayer and the grace of God, and she believes that He will answer our prayers in the way that is best for Katie and her “ministry” (she sees my blogging about her head as a ministry for those who come behind her with trig).

Katie’s Neuro Follow Up 2014 edition

Every year around this time, Katie goes to see “her Dr. T” to see how she’s doing and how she’s progressing. There were a few phone calls back and forth to set up this visit because no one was sure what Dr. T actually wanted to do this year. He decided that he would check her head and then decide, so we made the appointment in November and then waited patiently for the end of January. Her appointment was Tuesday.

On Sunday Katie lost her second tooth in five days, so she asked the tooth fairy to leave her tooth so that Dr. T could see it. Tooth, being a gracious soul, left it for her to show him. On Monday, Katie made a list of things that she wants to do that her father and I cannot agree on (Dr. T has graciously served as mediator as Katie has been growing and wanting to explore more and more things). This year, her list was written partially by her and partially by me (I wrote the letters she hasn’t quite gotten the hang of yet). This year’s list: riding a two-wheeled scooter; no training wheels, ride a horse, and downward dogs in yoga. I brought along some information on a class I’m interested in letting her take assuming she’s interested.

We were early for our appointment, which worked out well for us because Dr. T was running ahead too. I know, I know; doctors never do, but somehow, Dr. T is always on time and he is extremely forgiving when you get hung up somewhere in the hospital that isn’t as, um, efficient as he is. They did her height, weight, and head circumference. All normal stuff and as usual, Katie is near the bottom of the growth chart, but her head measures normal for her size. Praise God for that.

Katie was her happy, chatty self and completely enthusiastic about her visit. She was honest to God excited about seeing Dr. T. Given that she used to scream at the sight of his PA and was terrified of every person in scrubs she saw, this is amazing and awe inspiring. Dr. T came in and she was so happy to see him and he just goes with it. He got to feeling her head and he was pleased and not pleased. She now has bone everywhere but on the right side. We are rapidly approaching a crossroad, and he did think for a minute before he decided that was going to give her one more year to grow the bone on the right side. He didn’t think she could grow the bone she has so far, so we will continue to pray that God will make those little bones grow and she will get to do all the things on her list.

He did say, you could just use your common sense. I said, yes, well, one of us (pointing at P) wants to wrap her in bubble wrap; the other one of us wants ┬áto let her try things within reason. He said, do you say no? I said, sure, I’ve said no to acro (which her hero Bri does and she wants to try), and he said, okay, so we’re going to let Mom decide for the next year when Dad wants to reach for the bubble wrap, mom has the deciding vote. He also said that next year we will have to move if she hasn’t grown the bone. This is a faith journey — big time. She is a permanent resident of the prayer list at our church and I would respectfully ask that if your church or religious group has a prayer chain or prayer list, please add her to the list. God can do big things and I’m praying that He will do one more big thing for Katie. If He doesn’t, then I believe it means that this blog is serving a larger purpose.

Sitting in my closet right now is a two-wheeled scooter (pink and purple with Tinkerbell on it). She has asked twice already when she’s going to get her scooter, and that will likely happen tomorrow. So we will watch, wait, and pray.

So . . .

how did it go? Those of you who know me on Facebook or in real life, know that today was Katie’s big neuro follow up for the year. They check for bone growth, assess for interventions, etc.

So, the good news we got there on time and even though P forgot which building they’re in now, we still made it with plenty of time to spare.

 photo 2013-01-29094947_zps02e17300.jpg

As attested to by the fact that Katie had an opportunity to check out Dr. T’s cool toys.

Our favorite PA was not there (good from Katie’s perspective), and she did step on the scale, allow them to measure her height, and measure her head. We made the nurse-practitioner promise that she would never tell the PA how easy a time Katie gave her.

Dr. T came in. He wooged her head. He’s pleased with the top. It’s clearly filling in and she’s not in any danger from that area anymore. Then he felt the sides. And that’s where the good news stopped flowing. She has no significant bone growth on either side. At all. We are now three years out from the surgery and she is now in the very bottom percentile. At this point, something like 90% of kids are showing some growth, so none is serious setback. At this point, all we can do is pray and hope that God’s time coincides with Dr. T’s time so that by this time next year she *is* showing enough growth to delay intervention. He swears he won’t have to shave her head and that the process is not nearly so invasive, BUT it is a series of procedures and we’re hoping to avoid having her go through more procedures.

There is more good news, though. Katie, after some whispering, managed to ask her important questions.

Katie: Can I ride a scooter with a helmet?

Dr. T: And wrist guards, yes. (Turns out Dr. T’s son broke his wrist on a scooter, thus the wrist guard requirement)

Katie: Can I play soccer?

Dr. T: With other kids your age, yes.

Katie: Can I go to Sunday school?

Dr. T: Yes, as long as we tell them not to use ice picks on your head (I would like to know what church he goes to)

Katie: Can I play on the big kid side at the Y play center? (This required visuals acquired thanks to a good friend who was there last night and texted them to me)

Dr. T: (studies the pictures for a minute) Yes. It’s all padded, she’ll be fine.

Basically, the only thing he wants her to avoid, aside from ice picks, is tumbling. Just on principle. The top is healed enough now that if she takes a hit to the top we should not wig out any more than we would if Ben hit the top of his head. He said at this point, and with where the bones aren’t growing it would take a freak accident, with a pointy object (hence the ice pick comment), to cause her serious damage. We’re to use our common sense and let her be a “normal” four year old girl.

He thinks her balance and coordination seem a bit better (thank you, Judy’s Dance Academy). Her sensitivity to textures and sounds and such are in the “normal” range for kids with her condition, so he doesn’t feel intervention is necessary. He did comment that she is very small for her age, so that is something on our side. One good growth spurt could start the process of bone growth on the side.

And he’ll see us next year.

All of this is to say, if you had Katie on a prayer chain, please keep her on it. If you didn’t have her on a prayer chain, please feel free to add her. This will all happen in God’s timing, and I hope that I can be patient and remember that through the coming year.

Where she is now . . .

people who follow me on Twitter know that Katie had her big evaluation appointment for the year today. I was a nervous wreck, big surprise. She was fine. She was able to look at the fish and talk about them and all that. In what I consider one of the all time smart moves by a doctor, Dr. R hid out where she couldn’t see him but he could hear her and was able to determine (as we keep saying) that her cognitive processes are spot on. She’s a very smart little girl.

She walked right past him with no fear whatsoever and was digging in the toy box when he came in. When she spotted him, she curled in on herself and started to cry. She tried to shrink herself up so that she couldn’t be seen and fought being picked up tooth and nail. P is particularly grateful that I trimmed her fingernails before we went :). She screamed to beat the band while Dr. R felt around on her head. His physical exam took all of two minutes maybe.

The assessment: no significant growth in the bones, but she’s also very small for her age and he thinks the two may be related. He said that about 50% of kids show no significant growth at the 1 year mark (which is where Katie is) and 50% do. So, Katie is in the not showing group. He said that he isn’t worried and that because she’s so small, when her birthday is, and the fact that we’re homeschooling, he’s willing to give her more time than they usually do to fill in those defects (for those joining the party late, when they reconstructed her skull they had to leave intentional defects in it in order to make all the pieces fit together; the ideal solution is that the bones knit together on their own and the defects heal, this is what we’re talking about when we talk about bone growth). So, instead of her drop-dead point being age five, she gets until she’s six. What this means, she has an extra year to fill in those defects before we have to explore a second surgery.

He’s not concerned yet about the sensitivities that she shows. He said, in all honesty, this is the neurosurgeon’s area, but he’s seen this before and by the time they’re three (or, alternatively, by the time they have their big neuro follow up, um, at three) they’ve outgrown it. Again, he made the point that because of homeschooling, it’s not as huge an issue if it is sensory processing disorder. He agreed that accommodating her and working with her are the best things we can do for now (and also, he agreed that having an OT for a sister is probably a good thing if we need ideas for helping her unofficially).

He gave us the reassurance we were looking for. She can do all the things any other little girl can. We might want to avoid having her hang upside down and dropping her on her head (because I know so many parents do this on a regular basis), but she can start learning how to ride a tricycle (thank you Aunt S), she can swing on the swings and use the slide. She can take dance classes and swimming lessons and so forth. She probably shouldn’t take gymnastics (the hanging upside down thing), but otherwise, she can do anything she wants to do.

He said the main thing to watch for now is for her head bothering her. Essentially, if she complains about an intense headache that can’t be eased by Advil or if there is sudden swelling or extreme prominence of some of the materials that are holding her head together, then call him (or the neurosurgeon) immediately. Otherwise, he’ll see us when she’s four.

I can live with that. I absolutely can. And so can she!

Also, yay homeschooling for getting her that extra year!

Things Mothers Don’t Talk About — But Should

One thing I never really heard anyone talk about before I had either of my kids was a less than ideal “bonding” experience with the baby. My relationship with Ben was rock solid from day one. I adored him. He was beautiful and perfect in every way. We felt connected and to this day feel deeply connected. While we have our issues (screaming, him; yelling, me; hitting, him; crying, me), he knows without a doubt that his mommy loves him and has loved him every single day of his life.

I wish I could say the same for Katie. I love my daughter. I think she’s the sweetest, funniest little girl to ever set foot on the planet. She’s definitely one of the toughest, but that deep, elemental connection that I’ve felt with Ben since day one is not as present with Katie. That’s not to say that it’s not there or that we’re not connected, but I’ve had to work really hard to make that connection with her that just came with Ben.

I know that a large part of the issue was the fact that she and I were separated within a few hours of her birth and I didn’t see her again for almost 72 hours. The first 24 hours I was fighting for my life and on a ventilator, and then they needed to get me strong enough so that I could hold her, which I did — in the ICU. But I felt disconnected from the process. I was so consumed with trying to get myself better, I couldn’t think too much about this tiny little life that had just joined the planet. It was honestly a relief to me that she could stay in the nursery and get care, because there was no way that we could have done it with all the bells, whistles and wires attached to me. I was on an extensive array of scary drugs, so breastfeeding was out.

I made it out of the ICU, into a step-down unit, and then onto the maternity floor. At that point, I think everyone expected me to go nuts wanting to see the baby. I wasn’t as interested as I guess I should have been. I don’t know. I was in a total fog. I don’t really remember much except P suggesting that if I didn’t show an interest in her soon, they wouldn’t let her leave with us. The poor lactation consultant walked in after that and I sobbed all over her for a good twenty minutes. Thank God she recognized full-fledged panic. She convinced me that no one was going to keep Katie from us, that everyone understood what a horribly scary thing I’d just been through, that I was a warrior because I was out of the ICU and back with my baby — I lived. No one was expecting me to be completely together and it was okay.

Still, I wasn’t attached. I let other people take care of her. I was the still ill person that P dragged along to appointments for Katie even though I couldn’t process the information that we were being given. I felt like P had another child and I was along for the ride. She didn’t scream when she saw me or in any way show that she realized that mommy was having a hard time with connecting to her.

The fog started to clear right around the time Katie was six months old. I loved her, but I didn’t have the deep feelings that I had for Ben. And then the other shoe dropped — Katie had trigonocephaly. It’s like I’d been waiting for that shoe all along. I was waiting before I connected with her because I was so sure she was going to be taken from me. I was just so sure. And I shut down again for a little while.

But it was the rounds of doctors and exams and pushing insurance companies to do right for her that started to connect me to this child in a way I hadn’t been before. Handing her to a nurse for her surgery was literally the hardest thing I’ve ever done. Getting home after her delivery was cake compared to handing her to someone not being 100% sure that I’d see her again or that she’d be the same baby after her surgery.

Those of you who follow me regularly know that she isn’t the same baby, and maybe that’s what finally sealed the bond. See, I’m not the same person I was the day before Katie was born either. I’ve had to build a new life, a new reality and I think we’re now both in a place where mommy and little girl connect. It may never be quite like the connection I have with Ben, but I’d say that it is just as deep and just as meaningful because we had to work so much harder for it.

A Bit of Rambling

I’m probably about to be in for a shit-storm because I’ve gotten sucked into an abortion thing on Twitter. Sigh. I stand with HRC on this one. We need to make this a society where abortion is a legal procedure that is rarely needed. To do that? Better education. Better access to birth control. Better support for single women who want to have children. Etc., etc., etc. I am very seriously pro-choice, however. I cannot have more children. It would very likely kill me if I tried. If, through some seriously amazing procreative ability, I managed to become pregnant, I would have to abort. Why? Because I have two children who need their mother and I won’t sacrifice their needs. Period. You can disagree with me to the ends of the earth, it won’t change my position a single iota.

Also on Twitter, I referred to our soon-to-be-deceased fridge as the not-side-by-side fridge which is something of an inside joke. See, when we decided (read that to mean I twisted P’s arm harder than I ever have before or since) to view this house while we were househunting, one of the points made by the listing realtor is that the house had a side-by-side fridge. Personally, I don’t care what the fridge looks like as long as things stay cold and the freezer works to store my citron. But P was vaguely enthused about a side-by-side fridge enough to overcome his concern about the theoretical one car garage. It’s not one car, it’s two. The listing realtor couldn’t take a picture to save her life. Anyway, we walked in, started touring the house, got to the kitchen and said, simultaneously, “That’s not a side-by-side fridge.” And lo, it is not. It’s an ugly, old black fridge that is now on it’s last legs. Our big dilemma is whether to replace it now or to wait until it’s a freaking emergency. I’m voting number 1. Everyone who knows P knows which way he’s voting.

And yet again, on Twitter, was involved in a discussion regarding kids and their wild behavior if they haven’t rested. See, I thought I was the only one experiencing this insanity, but I’m not. Apparently, there are many other mothers whose children turn weirdly violent if they haven’t had enough rest. Ben hits. He balls up his little fists and starts windmilling the second things don’t go precisely the way he wants them to. P noted yesterday that Ben seems to need to have a knock down, drag out fight before he can go to sleep. I hadn’t noticed this before, but when thinking about it the last few times he’s needed to go to sleep he has had a big, big fight first and then boom! he’s out. I don’t understand, though, why his first instinct is to hit when things aren’t going his way with me. And I’m the only person he does this to. According to popular rumor, he’s a great kid when he’s not around me. Hmm. This makes the whole homeschooling deal particularly weird. Let me tell you.

I’m trying not to freak but I noticed a ridge on/in/whatever Katie’s forehead today. It wasn’t there before, and it looks strikingly reminiscent of her pointy forehead from pre-surgery. I keep reminding myself that things move around a lot on her skull and a few weeks ago you could see the bolts that hold that front part in place, so the ridge may just be more attempts for the bones to settle. On the other hand, I suppose it could be something. Double circling that thing in my calendar about calling Dr. R. Really, really need to do that.

Reading a really interesting book Is Breast Best?: Taking on the Breastfeeding Experts and the New High Stakes of Motherhood (Biopolitics: Medicine, Technoscience, and Health in the Twenty-first Century). Will be blogging about it.

An Open Letter to My Congressional Representative

Rep. Ross:

I have a 2 year old daughter who would have a hell of fight on her hands to get insurance when she ages out of our policy if your attempt to repeal health care reform had passed.

Could you look her in the face and tell her she doesn’t deserve health insurance because of a birth defect she had zero control over? While she is not, currently, your constituent, I am. So is my husband. So are many of my friend who find themselves in similar situations for them or their children. How can you say you acted in the best interests of your constituents?

I would be willing to accept that this was a conscience vote or whatever you want to call it but for one thing: you accepted government health insurance. I have a suggestion, you go find a private insurance policy to cover all of you and report back to us whether that is adequate coverage. And while you’re doing that, ask them if they’d cover a child who has had cranial reconstruction and suffers from side effects from that surgery. Ask them if they would cover an adult with asthma. Ask them if they would cover a pregnant woman. While you might not know the answers, I do. They won’t.

My daughter won’t have health insurance when she’s an adult if you and your colleagues get your way. I would like each and every one of you to explain to her why that has to be because she’s not going to understand. The truth is she (and every child like her) is being sacrificed for party politics.

I hope you’re ashamed of yourself because I sure am ashamed of you. I can also assure you that you won’t get my vote come next election because of a decision to stand for your party rather than the people you represent.

Out of Whack

I’ve been feeling particularly emotionally fragile for the last week or so. I don’t know how to explain it except to say it feels like I’m inside of a hole, dirt is falling all around me, and I can’t get out. People reach in to try to help me, but I can’t seem to raise my arms to accept the help. I feel sad. I feel stressed. I feel pressured. And all of it is internal. No one is making me unhappy. No one is pushing me too hard or expecting too much of me. I’m creating this all inside my own head.

And I couldn’t figure out why. I normally get like this right around the 13th of February. That’s the day that my grandmother died almost ten years ago. It always sneaks up on me and I feel just . . . off and then realize that I feel off because we’re coming up on the anniversary of her death and I miss her. And this feels like that, but it’s not that. No one died in October.

And then I realized, in a way, someone did. Last October 20th, Katie had her surgery. Right now is when we were rushing around trying to get ready for the surgery on Tuesday morning. We had to get a blood draw for her. We had to get the girls to their vet, where they stayed a week until we were home. We had to get Ben organized for his extended stay with a good friend (who is still a good friend after taking care of Ben, no small miracle that). And then we checked into a hotel room and waited for morning.

Katie was uneasy that night. She wouldn’t sleep. She struggled with everything. The only thing that let her sleep was to lay directly on top of me with a blanket over her back. So, that’s what I did. Hour after hour of holding my precious, beloved baby girl. It was a long night, but my sunny, happy girl was clearly in evidence in the morning. We got her dressed and drove over to All Children’s.

We did all the things we were supposed to do. They got her as prepped as they could. We met her anesthesiologist and saw both of her surgeons. And then we handed her to a nurse who took her as she screamed and screamed, walked down the hall away from us, and we didn’t see her again until the surgery was over.

We lost part of Katie that day. The part that trusts easily is gone. She doesn’t trust anyone outside of her immediate family. Even grandparents and aunts and uncles are met with some measure of suspicion. She won’t allow anyone to touch her head. She cannot handle the softest of pats or gentle sweep backs of her hair. She won’t wear anything in her hair or on her head. I finally, a weekend or so ago managed to put a small ponytail in her hair. I got pictures, and good thing I did because she ripped it out fairly quickly.

And there are the myriad other things that weren’t issues before that now are. Her hatred of baths and water and such. Her piercing screams over sudden, loud or jarring noises. Her inability to tolerate some textures and the variances there of. Something that was fine yesterday could be a torture chamber today.

All of this is new. All of this is post-surgery. So, we lost our seemingly normal, pointy-headed daughter and gained this little changeling. Please don’t get me wrong, I adore my daughter and she is smart and funny and a little frightening with her mastery of language (I know, I know, I’m her mother, what did I really expect). But there’s a part of me that mourns the loss of who she was. She was a sweet, easy baby who made her brother look super-difficult when he truly was the happiest baby in the world. And then, like a lightening strike she wasn’t anymore.

That lightening strike signaled a change in our lives that we weren’t prepared for and that we haven’t really recovered from. I always feel like I’m a day behind on everything and a dollar short — always. I can’t seem to keep from feeling like I’m drowning as I try to navigate our family through these waters, trying not to make too much of Katie’s differences, while also trying to smooth the way for her where I can, and simultaneously trying to make sure that Ben doesn’t get forgotten in the wake of Katie’s needs.

My heart shattered last week when my son informed me that we don’t love him as much as we love Katie, and he knows this because we don’t pay as close attention to what he needs as we do to what she needs. I didn’t think we were doing that. I’m still not sure that we do, but now I’m looking again at everything to make sure.

Add in my issues and it’s an amazing thing that the adjunct-house is still standing. But it is. And we’re struggling along as best as we can. It’s not easy, and there are days, like this morning, where I just want to throw in the towel. But I try to shake it off and keep pushing forwards. Maybe someday we’ll all get used to our new normal. A girl can hope, right?

She’s definitely worth it, don’t you think?

How is Katie?

If I had a nickel for every person who asked me that? I’d be a pretty rich woman. The emphasis lands on different words depending on who is asking and what they know about her situation. It’s pretty obvious that something is up. She doesn’t go with us a lot of places. Ben and I or Ben and P go out and the other parent stays with Katie. Some of this is truly for convenience. It is a pain in the butt to wrangle two kids at the gym when one is slippery from a swimming lesson. It’s a lot easier to send one kid with dad and a dog to the vet rather than all of us trooping over (though next visit every member of this household will be going to see Dr. Chip — yay us).

But then there’s the other times. The times where it’s not so much about convenience and more about accommodating the child Katie is. There are things that Katie simply cannot or will not tolerate. Sudden loud noises, for example. This includes the cart area in most grocery stores/big box stores/home improvement stores and so on. It also includes just about anywhere she can hear a train (so, walking in our neighborhood has to be timed to avoid the train). Malls are a special thrill when they’re busy. If it’s empty, she’s fine; if not, no thank you. She likes restaurants unless they’re really, really loud. So, Mimi’s for breakfast, no problem. Cheesecake Factory for any meal? Big problem. And she doesn’t like church. It’s not ideological, she doesn’t like the organ. And our music director/organist is well-known for his flourishes. He plays beautifully, but those flourishes are LOUD!

She walks on her tip toes about half the time. She does better if I put her in shoes, but there is a lot of tippy toe walking going on in this house. I really don’t remember Ben doing it this much. At first I thought it was a novelty thing, but it seems to be increasing as she goes along, not decreasing.

And then there’s the textures. God help us with the textures on her skin. She wore a new shirt about a week ago. It was made like another shirt she has and loves. While she was playing, I looked at her back and I realized that there was a little bit of a rash. I talked her into trading for a different shirt, but she had a raised, red, bumpy rash on her back that looked hideous for several days. She hates baths. Hates them. Even with the microfiber towels and the muslin washcloths and the special soaps. She hates them. It’s an exercise in screaming from the time I put her in until the bath is over. She stands and screams through the whole thing. It’s to the point that I’m the only one willing to bathe her. She does not like much of anything on her head. She does have this straw fedora that I got her on a whim that she loves, but otherwise, no hats.

But, she’s smart as a whip and learns extremely quickly. She hears Ben practicing a poem for school and she can learn most of the words, too. She’s learning her ABCs and her numbers. She’s willing to try almost any food we put in front of her (except peas, Katie does not like peas). She likes to play dress up. Mostly, she adores her brother as long as he doesn’t try to hold onto her for too long. She likes to be able to move. She tried to self-train, but it didn’t take. That’s okay, she’s very young, but she liked the pull ups a lot and wants to keep wearing them. This doesn’t bother me so we do let her.

Her pediatrician isn’t worried — yet. Though, she refused to say one single word in front of him. She clamped her mouth shut and just stared at him with wounded eyes. We all get the wounded eyes at times. She doesn’t like it when we raise our voices — any of us. During the month of November, she’ll have appointments with her ophthalmologist, her neurosurgeon, and her reconstructive surgeon. Assuming that they’re all comfortable with her progress, she’ll move to every other year with the neurosurgeon and the reconstructive surgeon.

The bolts are visible. If her hair is pulled off her face, you can’t miss them. Her head looks great, though, and that’s something. But we worry. It’s hard to let her go into the play center at the gym because we worry about her falling or hurting herself and them not knowing about her head. P worries about her being in the nursery at church for the same reason. I’m trying to convince P (and myself) that putting her in Tiny Dancers when she turns two will be good for her. And I think it will.

So, that’s how Katie is. She’s strong, opinionated, focused, determined, and amazing. I’m also worried because instead of starting to fall away, those behaviors of hers that could be a sign of trouble seem to be getting worse. She’s going to be a smart one, but the rest of it? We’ll have to wait and see; hope and pray; and, work with what she has and help her navigate what troubles her. Me? I’m going to pray for patience (way more than I already have, to be sure).

Well, that sucked

Giving Katie a bath has been a challenge from the beginning. She has never liked to be rubbed, hates lotion, and doesn’t like the towels or washcloths.

Tonight was a whole new level of hell. Being washed wasn’t too bad, the hair washing was accepted if not loved. But when it came time to get out and the towel touched her skin, it was like I was drying her with sandpaper. She screamed, she sobbed, she fought.

I feel like I’m failing my kid because I can’t figure out how to make her comfortable. She tolerates terry on her changing mat because there’s usually something in between her and it during a change and usually it doesn’t rub against her.

Trying to find things that are soft enough, that don’t hurt her is so hard. Even something as simple as a t-shirt, if done wrong, is pure misery for her.

This is the part of her condition that isn’t resolving itself and I’m completely unsure what to do.

Add to it that she won’t tolerate sippy cups, straw cups or any other cups.

She won’t drink anything but milk. No water, no juice, no nothing.

She’s starting to eat foods with texture. Soft pastas, cheerios, and so on.

So we’re making progress in one quarter, but we seem to be losing ground, quickly, on the stuff that touches her skin. I’m completely lost and don’t know what to do.

And here I thought the worst I could ever feel was shortly after her birth. Guess I was wrong about that.