A Child Update I Haven't Wanted to Write

The kids each had their birthday's in August and I've been trying to write an update on them since then, but it's been hard. I like to be able to have some sort of positive spin to how all these trials are going to end up, and yet all I have are a bunch of lose ends, unanswered questions, and the thoughts of, "how did we get here?"


I'll start with Em because her's at the time seems easier to write about. She has two potential surgeries coming up. One in fact is happening, we just don't know when. When I was pregnant with Em we expected her to have lots of malformations on her physical body, and then she was born and everything checked out fine. About 6 months ago though, Derek and I noticed a growth on her "cha-cha" (word I use to reference female anatomy because I'm immature). We thought it would just go away, because at first it just looked like a pimple between her bum, and her other opening, and so we didn't mention it to a doctor. Eventually though, it started to get bigger, and looked like a very tiny male anatomy part growing down there, and so of course I freaked out and called the doctor. We're told for now, it's a skin tag, but eventually once she starts walking, and crawling on hands and knees, it's going to get rubbed a lot, and be sore, get infected, etc... 

Because of the sensitive nature of where it is, the surgery is actually going to have to be a lot more invasive then a simple snip. They'll have to make an incision, remove the skin tag, and then sew the area back up carefully so that they don't effect the rectum, or cha-cha areas. Recovery will likely be a little difficult since keeping that area clean and dry where she's constantly pooping and peeing is going to prove to be difficult, and I'm not looking forward to it happening, but know it needs to be done. The doctor is going to try and push it back as far as possible for us, but said he would let  us know when we couldn't push it back any longer. 

The next pending operation is potentially for her legs. I'm going to start off by saying that the need for this surgery is not because Derek and I took a month off of doing at home PT with her while we moved. I think I briefly mentioned this on the blog a few weeks ago, and didn't do a good job at making it clear that it's not our fault. Em has very stiff legs, and has for a long time. When she crawls, she pulls herself with her upper body, and lets her legs hang out behind her. She doesn't sit unsupported yet (although she can now hang out on her own while sitting on a stool which is AMAZING), and when she stands in her leg braces, it's mostly just standing with stiff legs, so her legs aren't getting a whole lot of bending and stretching action, which has resulted in very tight hamstrings. We have stretches that we're working on with her at home, she hates them, but if things don't start looking better in the next month, she may need a surgery to loosen her hamstring muscles, which they'll do by making micro incisions in her hamstring muscles to help loosen them. If this happens I think it would likely be in about six months since there are quite a few doctors and specialists we'd get bounced between before it happens, but it is something we're working to prevent right now. 

As far as Jay is concerned, I've got knots and pits in my stomach just trying to get the words out. Not that I'm scared for his life, because I'm not... you just never know how the internet will react to these types of things, and so I'm nervous for that. So be nice if you think you're a better parent than me. Jay has always had a very anxious personality, and has always had problems in social environments. I've talked at length about this in the past, and honestly I was a little heartbroken when there wasn't a swarm of other mamas there to say, "Hey! I've been there too!", in fact, I got comments like "wow, I've never had to deal with anything like that", or the obnoxious, "He's just shy", comments. But the thing is, all of this reaches so far beyond shyness, and is starting to turn into behavioral problems as well. 

So we're in the process of getting Jay  setup with a child psychologist who specializes in art therapy. Art has proven to be a great outlet that Jay has really taken to, and so we thought that this would be the best route for him. I'm hoping that it helps, or that it at least gives us some answers that we've been looking for, I'm not scared about what get's uncovered, because Jay has already proven to be a very capable child, hitting all of his necessary milestones, and thriving in his school work.  I know he'll be a high functioning adult, who will do great things, but if it turns out he's on the Autism spectrum somewhere, then it will just confirm a suspicion that I've had for basically the last two years. Do I hope my suspicion is in vain? Of course, but I won't be surprised if it's not. 

Finally, we took Jay to the eye doctor for a follow up to his eye surgery, Initially the surgery was a success in both eyes, and then they both started turning out, and then we did patching which fixed one eye, but not the other. We then patched for one more month, and then stopped for two to see where we were at, and it stayed the same, one eye fixed, but not the other. So we're in another holding period. The doctor said it was up to us if we wanted to do the surgery again or not, but it's such a small difference that Derek and I are the only ones who notice it, so we decided to opt out. We're keeping an eye on it, and if it gets worse, we'll of course do another one, or figure out something else that may work (currently exploring the idea of vision therapy), but until then we're just on the wait and see timeline. 

10 comments

  1. Paige your kids are so lucky to have a mama that will do anything for them. You are amazing. Jay is dealing with so much. He's such a strong little boy. I can say this. Getting help helps. Zoe has anxiety too and I was really worried about her being on the spectrum. We got her evaluated and now she has speech therapy, occupational therapy and I take parenting classes because she just has to be taught things that other kids seem to figure out easier. She has grown sooo much and is really blossoming. All that to say, you don't know what you'll find when you ask for a second opinion, but it could be really helpful, and if it's not, you are still mama and can say no thank you, not what we're looking for and move on. Well keep little em in our prayers! Proud of you mama bear.

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  2. Oh Paige I'm so sorry you've got so many lose ends and surgeries to deal with! With my Crohn's I've had several operations and procedures in the same area as Em's skin tag and they are no fun. The first couple days are rough just trying to figure out exactly how to deal with bodily functions plus a healing incision. Once you get a method in place it becomes a lot better, so hang in there for the first couple days! I'm here to talk if you need anything :)
    I think you and Derek are wonderful parents! You guys spend all day with Jay and observe him constantly so you know better than anyone how his anxiety is affecting him. You've seen a need for your child and you are working to help him. That's exactly what parents are for and I think it's great that you are reaching out to a professional for some guidance and assistance. We can't be experts in everything and if someone can help you find ways to ease Jay's anxiety that is awesome! Cora has some anxiety, especially in large groups and have often wondered what I can do to help her be more comfortable and prepare her for those situations. You aren't alone :) I have a friend who has a little boy with anxiety and he wanted to come out and play with us yesterday so he draped a blanket over the play car he was sitting in and drove around like that until he felt comfortable enough to come out.
    I think you two deal with more than the average parent, and are handling it with a lot more grace than I would! Keep it up- those cute kids are lucky to have you!

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  3. Oh, Paige! That's got to be so hard!

    My 6 month old is a hard baby and a friend from church reminded me that God doesn't make mistakes in designing our families. He knows exactly what we need to grow us and stretch us to become more and more like Him and to have compassion for those around us in similar boats.

    I'm praying for a perfect peace and that God leads you in the best direction for both your precious children!! 💖

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  4. Paige, you are such an awesome mom to these sweet babies. They're lucky to have you. I'm so sorry you've had so many medical challenges to deal with for both of them - what a struggle!

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  5. My thoughts and prayers are with you! You guys are great parents and obviously have your kids' health and well being in the forefront of your mind.

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  6. OH my. You are a champ for handling all of this. Your kids just seem like such sweethearts. I wish we lived closer together and could be friends IRL. PS, I loved your Insta story the other day about how your blog income is covering your unexpected expenses. Heavenly Father is SO aware of us.

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  7. I don't know that they will decided about Jay but you don't need to be afraid of a diagnosis. It will not change your child he will still be the same kid he is right now. For me the diagnosis just allows me peace of mind knowing that what I am doing is as hard as I think it is, grants access to services, support groups and when my child is behaving different than people's expectations and I tell them he is on the spectrum they adjust their expectations and get nice.
    Call if you need a shoulder to cry on!

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  8. I wanted to comment that I actually see a vision therapist at the age of 30+ because I have an eye that tends to go in. I see double sometimes but the vision therapy is amazing and has helped me. It is tiring but I notice a difference when I do what I'm supposed to do and would highly recommend over surgery just to see if it helps him!

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  9. Have you heard of Brain Balance. If you haven't yet I would totally recommend it. It is fascinating how they can help kids with autism and even reverse it. Every kid and every situation is different but they have testimonials of parents with kids with reverse autism. It has to do with an imbalance in the brain. Where one side is stronger than the other. So they do exerise with them, nutrition, essential oils, music, to really strengthen the side of the brain that is the weakest. The initial evaluation is $200 I took my daughter there and they gave me answers more than teachers, doctors, and family! I highly recommend them. They work with kids with behavior/emotions problems becuase so much of it comes from the brain. Good luck!

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