Therapy

I cleaned of the piano recently, and G has been loving it while in his mobile stander! What a great incentive I had on my hands the whole while. I think he plays quite well, really.

He hasn't been enjoying PT much lately. He gets frustrated very quickly, and last week he threw a tantrum for quite awhile. He also has a walker, but he only lasts a few minutes in that. He is really excited about the mobile stander now that's he's figured out he can chase his brother around. G thinks it's quite amusing to run into people or things.

G has PT today, which I have a feeling will go okay, but not great. He's cutting some teeth, and they must be very annoying to him! He is usually quite even-tempered, but he's been impatient a lot lately. Two, I say!

Burned Out

I think it has something to do with being summer, having all the kids home, being busy, and starting a new business (selling jewelry), but I've just felt burned out about posting. I haven't even been keeping up on reading all that well. If I sit down to the computer and try to spend any time on here, I am being harrassed to do a million other things.

G has been progressing wonderfully. His vocabulary is expanding, especially in the last two days. The kid says his version of "Chocolate", which is "Choc." He points out his ears, eyes, nose, and names them, and his animal noises are spot on.

G now has a walker. He's not impressed with it much. He's had a mobile stander for awhile, and he recently really caught on to how to maneuver it. He goes and goes so much while in it, he gets red-faced and breaks a sweat. The walker, though, needs to be controlled by his legs, and this isn't an easy feat. Being two (almost), he wants to go fast, and he knows his arms can accomplish this. He will tolerate the walker for a short while, though, so we'll take what we can get.

He has also learned how to get on and off the couch. Originally, he thought he was quite clever coming down face first, but he's now decided maybe mom was right, and he should do it feet first. The thing is, he can go face-first and not get hurt, but the potential is really, really there.

Ten years for hubby and I tomorrow. :)

Obviously, I'm no professional photographer

The pictures aren't in focus, but the kid is still cute. :)

What?

I have plans, plans, plans to read and post and write, but my life. My life is so busy at the moment!! Eeeesh!

I forgot a PT appointment yesterday. It's been every Tuesday for almost two years. I have remembered to call and cancel during shunt revisions for pity's sake.

*sigh*

I hope things slow down, and I quit being so forgetful.

I think sleep would be helpful, too.

Someone else's words

Today I read a message posted by someone on one of my email lists about life being like a big waiting room. Learning to wait is one of the hardest lessons as a little kid, but as an adult it's not a whole lot easier. Here I thought I had become a more patient individual, but I think I was wrong. I find myself going crazy somedays with this waiting game. I'm constantly questioning myself and sifting through what is paranoid and what is intuition. It's not so easy to tell. Intuition has been spot on in the past, but I'm starting to feel like I'm paranoid with our recent bout of stuff.

I feel like something isn't right. Tests are showing nothing is wrong. This is good, but why do I keep looking for something to be wrong? I don't want anything to be wrong. Or do I? I can't imagine why I would want something to be wrong, so I'm wondering if I'm just paranoid. Do I just ignore these feelings? Brush them aside? How does one cope with paranoia?

I don't want to become the parent who everyone stops listening to because they've cried wolf one too many times, but I don't want to be the person who ignores the obvious because they don't want to be perceived as overreactive. I've got myself in a quandary, don't I???

Anyway, a lot of this is due to just feeling deep down something is going on, but testing is showing nothing. I absolutely abhor the idea of putting him through unnecessary testing, so I've decided I've got to just let it go and believe and trust that if something IS going on, we'll catch it on time. G had his ophthalmologist appointment on Wednesday, and his optic nerve showed no change. We return in eight weeks to continue monitoring and making sure it has no change or gets better.

On another note, I'm a bit excited about progress in the equipment department. On Thursday, G and I went with his regular PT to see another physical therapist about his mobile stander. We were given the mobile stander because it was going to be thrown, but it just wasn't working. The other PT knew how to adjust it, and we now have a functioning stander. We talked about getting wheels and a walker, and it looks like it will be happening soon, hopefully. I'm hoping G is able to gain speed and mobility.

Terrific Twos

It's obvious the child is entering that "Terrific" Two phase. It can be terrible for the parent, and tough for the child, but all in all it's a terrific phase. I mean, every day, despite much frustration, tantrums, irritation, it seems there is this energy, this desire to learn, to destroy, to shout, to exclaim. It's encouraging to see development and progress for mom and dad despite the ringing ears. As this photo demonstrates, the kid was not happy. It wasn't because he wanted to be out of the corn, he wanted to do it on his own, and he was furious I had pulled him in there. Once I put him on the ground, he crawled in and was as happy as could be.

G is definitely emerging as a personality. As a baby, he was this silent, watchful, peaceful buddha figure. He didn't use much energy to cry or complain, and he was a huge baby because of it. He is still very watchful, but he makes noise with the rest of 'em! I remember telling people who would often tell me what a fantastic, sweet baby he was, that I thought the twos would be challenging. I figured he was biding his time. And, it was painfully obvious to me that he was taking notes with how watchful he was!

Number Three was my most challenging in this phase, and I must admit, G isn't quite like that or even like my nephew. He doesn't always have the physical capabilities to get into stuff, climb counters, open fridge doors of fish in the toilet, but his personality is definitely that of a toddler entering that two-year-old phase. He expects, no demands, that I allow him these privileges and take him there right NOW! And the word NO to him is as if I've slapped him across the face and ripped his poor, wittle heart out

I love the challenge of this age because they want to learn so much. It's all about learning and discovering and figuring things out. There are days I can't keep up with it and get frustrated and act out like I'm two, but for the most part, I really don't mind the Twos.

With G, there is a different aspect that I find difficult to deal with. This would be the shunt. Again. I'm having to learn what his Two is like. I know what my other three kids were like, I know how they acted, but what is normal for him? What is excessively irritable? Where does one draw the line? What do you ignore and what do you pay attention to? It's a challenge, that's for sure, and I'm not sure I'm relishing it much. I feel on edge whenever he cries or screamz, especially if he sounds in pain. And of course, the smart kid has figured out if he cries, "Owie!" mommy is right there asking where it hurts. Boy, I'm going to have to work on that.

Overall, though, I'm enjoying the attitude from this kid. He's funny, smart, and ornery.

A little thing called a bath

G hasn't had many baths in his lifetime. He's 21 months, and he had 21 casts off and on to correct his little feet. Many a sponge bath was had. He has had some baths, but he's been terrified of them, and I decided to not force it. Therefore, it's been awhile since he's had a bath. I've been having him wash his hands and splash and play in the sink a bit, and I have him watch the other kids bathe. He hasn't minded being splashed recently, so I decided it was time to give it a try again.

I put G in the bath chair in the tub with his brother a few nights ago, and at first he cried, but then I splashed a bit of water, and it tickled his fancy, I guess. He was happy and content to play, and he cried when I took him out.

I find this so exciting that he finally enjoys a bath. No more screaming and trembling from him and no more feeling like I'm torturing my kid.

Another thing he's been finding enjoyment in is Blue's Clues. None of my other kids have been suckered into a show like this. He will yell, "Blue clue!! Blue clue!!" while we are watching a show, and he's quite persistent about it. Today he signed "please." It's kind of cute, and it's very, very helpful for bedtime. Getting him ready for bed takes about a half hour, so it's been nice to not have him screaming as I dress him, change his diaper, put his braces on, and give him medications. I think it's taking less than a half hour because we're not engaged in a battle anymore. Thank you, Blue, Steve, and sometimes Joe.

What's worse than dirty underwear?

The answer: dirty socks. I'm thinking of this because I'm packing. When G had his first shunt revision, hubby and I didn't pack anything when we went to the appointment. We live about two hours away from the hospital, so I'm not sure what we were thinking. G was admitted and had surgery that afternoon. It was a Monday, and we came home by Wednesday. I was able to survive the underwear, pants, shirt, but the socks were giving me heaves when I had to put them back on in the mornings. I shudder at the memory.

We've been through a few more unexpected surgeries since then, and I bring extra underwear, but I definitely overpack socks.

G has an appointment today for a CT scan. His behavior has changed, and we're thinking shunt. I hope I'm wrong.

The shadow of the shunt

This morning was G's last dose of antibiotics. He has a fever. I debate, I call, and we go. He was on amoxicillin, so I wouldn't have been surprised if it hadn't done the trick for the UTI we were trying to get rid of. It looks like it's just a virus, though.

I said to the doctor that I felt so paranoid bringing him in for just a virus. His comment was, "You need to be paranoid with him." He meant this in a reassuring way, and I took it that way.

I still feel paranoid, though. G is four months post-op for his shunt, and he's still at risk for shunt infection. He cleared for strep throat (his throat was red), his urine sample looked clear, so we're going with the virus. Unless something grows in the cultures. His blood count was good, though (11, 000), so as I run through all these things I feel calmer.

I feel like, though, I live under a shadow. The shadow of the shunt. The questions, the concerns, the potential issues. They are always there. I'm always trying to rule them out. Will I be able to breathe easier someday?

Worry

I've never been much of a worrier. I'm the laid-back mama who lets my kids play, who lets her kids develop at their pace. I always have a watchful eye, but I try not to smother.

Then along came G, and I've become that mother. The one you talk to who always thinks something is wrong with her child.

I see this about myself, and I don't know what to do. I don't particularly like to think I'm a worrywart or paranoid. I want to be calm and relaxed, but his recent history has warped my perspective.

What I'm most afraid of, though, is being dismissed by the medical community as THAT mother. So far, my record is pretty good in knowing when something was wrong. I'm always questioning myself, though. Is something wrong? Am I overreacting? Over and over I do this, and I try not to make a call unless I'm sure. Reading through some of the medical blogs only reinforces this doubt in myself. I don't want to be perceived as an overanxious parent caught up in having something wrong with her child. I don't want to be perceived as stupid or ignorant.

My latest concern has been tethered cord. I find myself looking for the signs, and I'm finding some. Every little thing that occurs, that is different, that "could" be something, is always, always about the shunt. G's been napping more and sleeping a long time. This could be attributed to a number of things. But there's this "but", and it is so hard to take things at face value. I hate losing that, I hate not being able to appreciate more sleep without that "maybe" surfacing. The one that I haven't spoken out loud because I KNOW it's silly is whether he's laughing too much. Seriously.

Do I seem officially over the top now on the worry factor? He giggles and giggles about something, and I honestly have been concerned that he's laughing too much. Worried that somehow his brain is being affected by pressure causing him to giggle incessantly. Now, honestly, why can't I just enjoy it? I do enjoy it, and I always end up laughing a long, but there's this cruel thought in the back of my head going, "I hope this is okay. I hope this doesn't mean anything serious."

Okay, maybe writing that out was a good thing. I'm giggling to myself now at how ludicrous it sounds.

It's so strange for me to worry this much. Worry isn't a good thing. It doesn't solve anything, and it only causes stress. And stress ain't no good. It gives me a big belly.

Musings on doctors

I've been attempting to write a post for several days now, but with four kids at home I have CONSTANT interruptions and lose my train of thought. I compose coherent essays while going to sleep at night, but when I sit down to write them during time at the computer, things sound fragmented.

I have several posts mulling in my head about doctors, challenges, perceptions, accomplishments, you know, things like that.

I will attempt to post something today despite the interruptions that frequently occur.

For us, since G was born, we have encountered quite a few doctors. Even before G was born, I guess. Once we found out about the spina bifida, we were sent to a group of perinatologists, and they thought it was brilliant if you saw each and every one of them. I hated that. How do you get comfortable with who is attending your birth? You don't. You don't know who will be there, and they think if you meet each of their doctor's at least once, somehow they'll remember you at your birth. Or you'll be more comfortable since you met this doctor. Or something. It's beside the point, really. My intention for this isn't about that.

At each visit, I had a lot of questions, and I wrote them down in this small notebook I purchased. I referred to it as my Brain because it contained names, addresses, pertinent questions, important answers, and it did the work for me to remember everything I couldn't at that time. Once G was born, I continued using this notebook and bought a new one in January. It's been invaluable.

One of the main questions I had at this time was "What can I expect?" Initially, when we were given a diagnosis, it wasn't correct. It was believed he would die due to his brain malformation. When we saw the perinatologist after an agonizing ultrasound, he said, "Oh no, it's just spina bifida." We were given a pamphlet and some other reading material, and we went home with our minds swirling. I read the handouts, I read stories online, and heard some stories from others about someone they knew with spina bifida.

What I wanted to know, though, what can I expect from this baby, my baby? What will he be able to do? How long will he live? Will he be able to walk? What about his bladder and bowels? What about the shunt? Will he be brain-damaged? How much? Will I be able to breastfeed? What is he going to be like? Will he look funny? Scary? I mostly focused on the birth plan after awhile because contemplating these questions and the possible answers were tough to deal with.

I remember we spoke to the neonatologist before G was born, and the answers he gave were vague and didn't really answer much. Basically, it came down to each baby with spina bifida is individual. The severity is different for each one. My baby's lesion was lumbar 4ish, and it was probable he'd walk, but it wasn't promised. He could have severe hydro and be mentally handicapped, or he could not have hydro at all. The range is wide for spina bifida babies.

It was tough to accept that we wouldn't have definite answers, but I decided I had to. After he was born, the doctors we've seen, the neurosurgeon, urologist, orthopedic, haven't given us false hope. They haven't given us devastation either. They've presented us with information and caring, of which I'm much appreciative. They haven't once said, "Oh, he won't be able to do this or do that." or "He'll have nothing wrong! He'll be able to walk!" They've told us clearly, They Don't Know.

In some ways, it was hard to accept this answer of I Don't Know, but as time has gone on, it's been okay. They were right. They don't know what my son will or won't be able to do. They have an idea, I'm sure, but as one told us, he didn't offer that kind of speculation anymore because he's been proven wrong more than once. I appreciate that. There's the knowledge of what he can potentially do/cannot do in regards to his lesion level, but nobody's stuck him in that box.

I feel that we've had very positive experiences with G's doctors so far, and I'm very thankful. This isn't to say we haven't had negative experiences because we have, but his main team has been excellent.

Comments

It's been very hot and muggy here recently. I thrive in it, but G is on medication that inhibits his ability to sweat and puts him in danger of overheating, so to speak. He flushes up even when it's not this hot.



On Thursday, my mom, sister, nephew, G and I went to town. We ended up going to a few garage sales, but sis and I didn't feel like taking the toddlers in and out of their carseats, so we chatted in the car. Afterward, we went to a bakery to get cookies (can I say YUMMY?? I'm all about making my own, but these were delicious), and as we walk in the clerk commented on my G's "sunburn." I didn't correct him that he was flushed, but he went on about it a little.



We ordered our cookies, and he brought it up again, saying something about keeping little ones out of the sun. I made a comment about him being flushed by the heat, but I didn't feel like an explanation was necessary at this point. While we were paying and saying goodbye, he said, "Keep the little one out of the sun!"



I finally said, "He doesn't have sunburn. He's on medication that causes him to flush."



"Oh."

I'm not sure what's the correct thing to do in these circumstances. Sometimes I feel like I overshare and sometimes I don't feel like giving all the information. The clerk wasn't rude, and I appreciate his concern.

Not finding time

Well, it is summer, but I think it'll slow down a bit after this week. The kids have been going to Bible school near my parent's, so we've been hanging out there. It's been nice, but I feel like I'm going, going, going.

G had an ophthalmologist appointment Thursday, and of course, it came with drama. His optic nerve was swollen, and we had to head over to the neurosurgeon for a CT scan and consult. We'll be going back in a few weeks to see if it's resolved. It's possible it is just that way, but it's also possible it's indicating pressure. My gut is telling me he's okay shunt-wise. A few weeks ago, I didn't feel that way, though, and I wonder if he had a partial blockage that flushed out.

The shunt is such a "thing" all the time. It sounds like it can be such a non-issue for some people. Not us, I guess!

He's not Spina Bifida

In one of my groups, we had a new parent join, and another parent gave her the advice that this isn't spina bifida you are expecting, it's a baby. She told her to enjoy the pregnancy and focus on the fact she has a baby coming.

I remember receiving that advice myself not too long ago. Well, almost two years ago! At the time, I yelled at the monitor, "HOW???", but it was the best piece of advice I received. At first, I was consumed with finding out information, uncertainties, concerns, all that good stuff when you get a diagnosis such as it's "just spina bifida."

But then it shifted. I decided to enjoy the pregnancy, I decided to embrace the baby, and come what may. Sure, each doctor's appointment brought issues to the forefront, but I resolved to have my moment and move forward.

I did have a good pregnancy. I was pregnant in the summer, he wasn't due until the end of September, and I loved it. I loved the clothes I was able to wear (sooooooo cute), I loved that I wasn't itchy (winter pregnancy gave me dry skin), and despite being diagnosed with gestational diabetes, I felt great.

When we were given the diagnosis that he had spina bifida at around 24-25 weeks, I hadn't felt him move much. He started going crazy then. At first, I was upset. It was bittersweet, but it eventually became reassuring.

When people would ask the normal pregnancy questions, it was difficult to not answer, "My baby has spina bifida." There was this sense of that was what he was, if that makes sense. He became different with that diagnosis, and I had to work past it. Even when he was a newborn, I still associated him with spina bifida. He's not spina bifida, though, he's a baby, a toddler, a person. I think he'll get this tag a lot as he gets older. He'll be "that kid with spina bifida", but to his mother, he'll be her son.

Changes

When G was born, it was hard to imagine what his feet would look like. I knew he'd have clubfeet before the ultrasound. When I found out he did have clubfeet amidst the other issues, it was almost reassuring. It was something I was familiar with. Our oldest had been born with a clubfoot, and we'd been there, done that.

At birth, though, the sight of his feet and legs shocked me. He didn't have "just" clubfeet, and it was very apparent. I remember when my daughter was born, and I couldn't imagine how they could fix her foot to be straight. It happened (quite nicely, I might add), and I naively thought it would be just as "easy" for G. When he was lying in the NICU, and his little legs lay there, I had the same thoughts, the ones I wasn't expecting to have because, hey, I've already done this! How would they possible straighten and appear "normal"??

It did take a lot of casts (21), but his feet really do look good. He's had tenotomies, but he hasn't had to have major surgery on them. Perhaps it's in the future, but for now, they are straight and beautiful. It is such a small victory avoiding that one surgery. There was a time where I gave up and felt "doomed" to have the surgery. I remember thinking, "What's one more surgery?", and I can't believe I ever thought that, but I did.

That feeling of isolation

Sometimes, it just hits you, that feeling that no one listens or understands. While I know that's not true, sometimes it feels like it. It's when it's the people you think are closest to you, seem the most distant.

Yesterday, I had a conversation with my sister, and I exited the conversation feeling so slighted. During the hospital stays in January and February I felt very alone. I was two hours away from everybody, and their lives went on while I cared for a crying, in pain baby who endured more pokes and stabs than I would have been able to. It was hard.

My sister, I thought, had some insight into that. We've discussed it, I've tried to convey some of the stuff that went on and how I felt. I got off the phone yesterday feeling like I've never been heard. As if I've been talking to myself.

It's not all about me and how I feel. She and I have conversations about her and her frustrations, feelings, etc.

Yesterday, though, she was talking about her youngest and being concerned he might have adenoid problems. She said she couldn't put him through a surgery for his tonsils because she did that with her oldest, and it was so hard. I responded that my view on surgery is a bit skewed (I certainly don't advocate surgery unless it is needed, but the Big Dealness of it hasn't lessened exactly, but certain surgeries seem like bigger deals than others, if that makes sense), and that's all the further I got. She responded, "Just IMAGINE seeing your baby in pain! Imagine yourself having the sorest throat ever and imagine seeing your baby go through that."

I could not even respond to that. It's not like she's just some person of the street who heard our story for the first time and perhaps forgot some of the details. It's not like she's even an acquaintance who knows us and of our story. She's my SISTER. I talk to her almost every day.

Can I possibly imagine, can I, what it's like to see my baby go through pain? Can I? He had four neurosurgeries in the span of one month, and my sense of normal is a bit skewed. I held my poor little baby down for I.V. lines to be placed, for blood to be drawn, for shunt taps to be done, and I watched him go off to surgery after being informed of all the risks time after time.

Having tonsils removed is scary. I don't want my nephews to go through that either, but if they have to, they have to, right? I tend to be pragmatic about our situation and not fly into a tither every time he's had surgery, so I'm not going to be overwhelmingly dramatic at the thought of a "potential" surgery that may or may not occur. It doesn't mean I don't care, it doesn't mean it isn't a big deal, but when your son's brain has been tampered with as much as mine has your perception tends to be a bit different.

I wasn't trying to minimalize her situation, and honestly, I didn't say a whole lot. I pretty much kept my mouth shut other than to say as far as surgeries go, her older son's did go really well, with no complications, and that if she did have to go through it again, she would know what to expect.

I'm not sure exactly why she thinks I can't imagine what it would be like to see my child recover from surgery. Am I being overly sensitive or was she insensitive?

*sigh* It's just one of those days. I'll move on and get over it.

Getting around

This isn't his most efficient way of getting places, but he likes to use it when he welcomes daddy home or he just has a short distance to go. Those little power arms are so wonderful to see again. After his surgeries in January and February, his arms looked so frail.

I also am so happy with his feet. We've gone through a lot of casting for those feet, and I'm so pleased they are looking so good. When he came out of his casts after all his shunt surgeries, his legs looked so limp and his feet so floppy. They seemed to want to immediately turn back in. Once he regained his strength and then starting bearing some weight, I've noticed a big difference.

I'll be so pleased and happy if he walks, but if he doesn't I don't think I'll be disappointed. One doctor made the comment that if you can't walk, you can still run a boardroom, and that's really stuck with me. I'll do my best to support G on his journey. If he walks, I will be thrilled. If he wheels, I'll be thrilled.

So many people put such an emphasis on his walking, and it's kind of weird to me that it's such a big deal to them. I've said many times the likelihood that he'll probably do both walking/wheeling is very high, but they are so dismissive of the wheeling aspect. I don't think they understand how weak his legs are and how much effort he has to put into using them.

I really think he probably will walk. And that's a great thing. I think, though, that he'll also use a wheelchair. That doesn't make me faithless. It doesn't make me a pessimist. It doesn't even make me a realist. I'm not accepting a negative reality because, really, what's so wrong with him having to use a wheelchair? I'll encourage the kid as much as I can. But I sense, I feel, this judgment when I say he'll probably do both. As if I'm somehow giving him limitations. I honestly believe he'll be limited if my focus is on just getting him to walk.

Two years ago

Two years ago I was pregnant with G. I had seen my midwife once as I was planning a homebirth, but my ob/gyn I normally saw wouldn't see me. I was very sick at 11-13 weeks. I remember calling and asking to be seen, and they said they couldn't see me for over a month. I knew at that moment I wouldn't be dealing with them.

Being I was going to have a homebirth, I wasn't going to have an ultrasound unless medically indicated. This was going to be a hands-off kind of birth. I felt very strongly that I needed to have an u/s, though, because I felt like something was not right, and I talked to my husband's cousin who is an u/s tech. She agreed to do the u/s, but it wouldn't be an official one. I was okay with that.

I remember being late for the appointment. "Marilyn" was waiting for me at the entrance of the hospital (a very small, rural hospital), and we went back. She asked me if it was okay if someone observed, and I said that was fine. She did the u/s, showing the other girl, and explaining things. She didn't take very long, though, and she kind of rushed through it, I thought. Afterward, as we were talking in the parking lot and saying goodbye, Marilyn said she had to mention something.

I felt this sense of, "Okay, here it comes, I KNEW it." She told me the ventricles were enlarged. Ventricles? What was she talking about? I noted the words in my head as she continued talking. I was around 19-20 weeks at the time, and she said that sometimes they resolve in a couple of weeks. Her recommendation was to have an official ultrasound in a couple of weeks by a different tech and read by the radiologist. She told me not to worry, but she definitely recommended I be seen again. I thanked her and told her I appreciated her taking the time to do this for me.

At home, I researched on the internet. At first, I didn't type in ventricles, but vesicles. When I did type in ventricles and got more information as to what it might entail, I prayed. Things mentioned were hydrocephalus, spina bifida, other problems that resulted in death, and many even mentioned it could signify nothing.

I found a different doctor, since my ob/gyn wasn't receptive to working with me. I was still clinging to the hope that I would be having a homebirth. I met with Dr. A, and I really, really liked her. She was perfect, and if I ended up having to deliver at the hospital, the facilities were acceptable and comfortable. She also felt the enlarged ventricles could resolve on their own, and we scheduled an ultrasound that would be about three weeks from the first one. Dr. A also mentioned she'd be on vacation at that time, but she wanted to know if it would be alright if I didn't get the results until later. I was fine with that. I left that day, feeling calm and reassured. I was leaving my fears in God's hands, and if something was wrong, there was nothing that I could do about it. I didn't stress or worry those two weeks. I really didn't. I did my initial homework, but I let all of it go. I trusted in God, but I knew, I just knew, that something was not right.

It's weird to think that it was two years ago. It truly seems like it was a few months ago we were dealing with the knowledge. I don't remember the date of that u/s, but I remember it was in May. I do remember when we got the results of the second u/s. That was June 15.

Shoes

There were so many things I looked forward to with my last baby. I couldn't wait to buy him/her baby shoes. With my older kids I hadn't heard about Robeez or Bobux, and I couldn't wait to purchase some. I looked forward to enjoying and relishing so many different things. Homebirth, slings, being that ultra-relaxed fourth time mom and enjoying every minute with my last baby.

I don't mourn often the things that changed when we received his diagnosis, but the shoes are the one that cuts the most for some reason. My nephew was born the same time as G, and he has some of the cutest shoes ever. I missed out on shoes with my oldest, who also had clubfoot. At least, when she turned a year, her shoes could go straight on her feet. With G, we're always having to figure something out that will go over the AFOs. The robeez did fit at one point, but they don't anymore.

It's one of those things. Just one of those tiny losses that cut deeper than they should.

My sister has helped find some cool footwear for my kid, and I love them (and her), but I would so love to just buy the shoes I want to.

So many people comment on the cuteness of the AFOs, but I have a hard time with the appearance sometimes. We've gotten the buses and trucks, or whatever the design is, but they mostly seem awkward and hot-looking to me. I don't mind them in the winter, but in the summer I want to leave them off and let his toes be bare. He needs the AFOs for stability and maintaining correction for his clubfeet. I don't want to lose that correction (we went through 21 casts, two tenotomies, and 7 hour trips one way for the last five), and I don't want him to fracture his leg again. So, they aren't optional.

I miss bare toes, I miss cute socks, I miss adorable shoes. It's just one of the little things that seems big sometimes.

Playing

This weekend we went to a park for a party, and G and siblings had a blast playing. G was determined to crawl up the steps over and over, and he did it. I was so proud and amazed at the strength his upper body has. He even went down the slide with my brother's help and me at he end. The first time he looked scared, but after that, it was belly laughs.

Other kids were there, and about four to five of them were his age, and it is always a little jolting to see where they're at as opposed to where he's at. It's impossible to not notice.

He's my incredible G, and he is who he is. I love him, I support him, I encourage him, I embrace him, I accept him, and I am truly blessed.