Um...

I don't even know what to title this blog. It's going to be a mishmash of several different things since there's a few updates on Jaxson and I need to vent about my own stuff. On the positive side, Jayson and Jeffrey seem to be doing just fine. Jeffrey has been attached to me lately, I think mostly because I haven't been able to spend much time with him and he can tell I'm not doing that great. But he's doing  great, recognizing numbers and playing outside a lot while it's still nice. Jayson has been a trooper keeping the house clean and taking care of me and the boys. He makes sure we have food in front of us when we need it and that I bring lunch to work with me. He knows I won't eat unless he sends something with me!

So that brings me to Jaxson. In the last post I noted that he would have a brain MRI, spinal MRI and 3D image of his skull on November 1, followed by his skull repair on November 5. He had an ENT and neonatology appointment this week, followed by an follow up audiology screening. The ENT, by pure dumb luck, is the doctor that's part of the craniofacial team so he would have been following Jaxson anyway. He said that Jaxson has fluid in both ears and will need tubes. All babies with cleft palate's need tubes because their anatomy is incorrect. What I didn't know was that he'll have his first set at six months. Yes, I said first set. He will end up with several sets of tubes because they only last a year to a year and a half. Sure, it's pretty common, but for me it's just something else to add. Jax is supposed to have tubes around the same time as he is supposed to have his spinal surgery. So now I have to figure out how to get everything done and not have him undergo surgery before he's healed from the previous procedure. I'd like to have the tubes before the spinal surgery, so it will just be a matter of coordinating between the two offices. If you have ever had to coordinate anything between two different departments at any hospital, you know how much fun that's going to be!

Jaxson's neonatology visit went okay. The occupational therapist said that he should be seen once a week to ensure his fine motor skills get back on track. He's still behind on a lot of things, but it's all mostly because he was in a hospital bed for 6 weeks. He's definitely moving in the right direction, but  there's still some work to do. They also referred him to a low-vision specialist because he's not tracking well with his eyes. I think he can see because he responds to smiles and faces, but I'm not sure how well he sees. They are supposed to call to schedule the appointment, but they haven't yet so I may have to call soon. I would like to have some kind of base test before he has his skull repair to see if his eyes are affected by the surgery. Jax has also been getting pretty sick lately and has been a little constipated too, so the nurse practitioner called neurology to see if they thought it could be due to pressure in his head. Thankfully, they don't think that, so we made some adjustments to his feeding schedule and he actually has not thrown up more than once a day for the last two days. And that's saying something since he was getting sick up to 4 times a day before that, so lets hope it continues!

Those appointments were Monday and Tuesday, respectively, and then on Wednesday he had a follow up hearing screening since the first one was inconclusive. Unfortunately, Jaxson didn't want to stay asleep so we couldn't complete the test. And he had a pretty tough day at neonatology the day before (he got pretty sick) so I didn't want to push it. They're going to try and schedule the screening for November 1 when he has to have anesthesia for his scans. Since he'll already be under, testing his nerves won't be an issue.

With everything getting scheduled and coming together, I'm finally starting to feel everything sink in. I'm tired all the time, no matter how much sleep I get. I'm emotional and sensitive. I mean, I know that this isn't a horribly uncommon surgery, but they're cutting my kids head open. I know that's a pretty carport way to word it, but it's the only way I can get people to kind if picture it and understand why I'm so moody. Today was actually a good day, but the last few days have been really hard. I have no idea how I'm going to handle things when the time comes. I'm going to the doctor tomorrow to discuss options for getting through this. I feel like I mostly have a good handle on everything, but I can feel the pressure coming on and I want to be able to function normally as things continue to happen.

Honestly, I think I would be okay if it was just one thing or another, but the combination of Jaxson's issues combined with money issues and trying to cope with being a working mom and giving Jeffrey the attention he needs is just becoming too much. I love my kids and my family too much to let anything go by the wayside, so I feel that it's time for me to admit that I need help and go get it. And not just financially.

Speaking of money, I am so tired of people posting that stupid meme that says, "if you can afford an iPhone you don't need food stamps". Do your research people. I have an iPhone. Are you telling me that suddenly I have to give it up because I have a medically ill child and my husband can't work? Not to mention that you have to jump through 5000 hoops just to qualify for assistance. I started my application process back in August and I still have nothing to show for it because we have to get letters from Jayson's past employers stating he doesn't work there. And they won't give you anything if you have no income. If you've never been through the process then you have no idea how hard it is to even accept the fact that you need help. And then to see something like that all over the Internet makes you feel even more guilty when it was made by someone completely ignorant of how government assistance programs work. The people who abuse the system are so few and far between its ridiculous. Don't judge just because you think people take the easy way out. It's not actually easy. Don't take away from those of us that need it and pay into it while accepting the help it provides. And this isn't political. It's personal. Here's some food for thought: how much is your annual salary? Now imagine a family of 4, a one income household, living on your salary alone. Not much is it? Now imagine that that family doesn't qualify for assistance because they make too much money. Yes, that's exactly how it works. And no family of 4 can survive on that. I can't disclose numbers for job purposes, but look up what it takes to qualify in Ohio and then tell me you support getting rid of those programs, or cutting funding for people like me who have no other option.

End of that rant. I need my iPhone for work purposes and just because I need a little help with medical bills doesn't mean I should have to get rid of it. I bought the phone when I could afford it. Things change. Circumstances change.

And now it's after midnight and I have to work tomorrow. I'm tired. I'm annoyed and I'm emotional. I'm scared to death for Jaxson and I'm worried that I'm not giving Jeffrey enough attention. No Facebook posts for awhile because I just can't. But I'm sure I'll be here more often because of it. Do me a favor: keep your comments on assistance to yourself, regardless of how you feel. I really don't care.

Surgery Scheduled

It's bee way too long since my last post, but the lack of sleep around here is killing me. Jaxson is growing like a weed, he weighs close to 11 pounds now! He's only had a few PT and OT visits since my last post, so there's not much to report as far as diagnoses, etc. I will say that he is still slightly behind on his development and where he should be. A lot of that can be attributed to being in the hospital for 6 weeks, some of it may not be. But I'm not overly concerned at this point, there are way too many other things going on to be worried that he's not trying to reach for objects yet. Well, let me rephrase, you can see he's trying, but his low-muscle tone isn't allowing him to do much more than attempt.

So the real reason for this post is to talk about Jaxson's skull surgery. On November 1, Jax will have the 3D image on his head, a brain MRI and a spinal MRI. The 3D image is to make sure there's no additional fusions and nothing new or different from the previous MRI that was completed. Same with the spinal MRI, although that surgery won't happen for a couple of months. The brain MRI was ordered by genetics. One of the reasons that bond fuse together in the skull before they're suppose to is that there's something structurally different about the brain. So this scan will tell them is his brain is normal or not. Don't ask me about the "or not." I chose not to ask what that meant because I don't want to worry about it when it's not necessary. If its a problem, I'll address it then.

Jaxson's first surgery is scheduled for November 5. Scans on the first, surgery on the 5th. It's a 4.5 hour procedure. Thankfully, Sara agreed to watch Jeffrey that day and my parents agreed to have Jeffrey spend the night the night before. I feel very lucky to have a family that will support me while all of that is going on. And especially lucky to have a husband that understands that I will be spending that first night in the hospital. Jax will be in the hospital anywhere from 4-7 days recovering. Now that he's been home, leaving him there is not going to be easy. I haven't slept much in the last few days since I scheduled the surgery, and I don't anticipate sleeping much until this is over. Jaxson is going to have plates and screws in his head, from my understanding of how this works. He'll have another blood transfusion. His eyes will swell shut for a few days. I'm going to be a mess.

I took that entire week off from work, which poses a problem in itself. Thankfully I have an understanding boss, but I've now added more stress to her. See, that's the week before she gets married. So she's taking off Thursday and Friday that week, the other manager is off Tuesday and Wednesday that week because she's working the weekend. So that leaves 4 days where there's only one manager. I'm hoping we can get some help from another branch, but if not I said I would come in during the evening and close the branch if I had to. It's not something I really want to do, but it would help the branch and probably take my mind off of things.

I'm so nervous and scared for this surgery. I know it's more common than most people think, but this is my baby we're talking about. They're going to cut his head open, remove everything that protects his brain, rearrange it, and put it back together. I nearly shed tears every day. I can't eat, I can't sleep. I can't focus on anything. And there's nothing I can do about it. If we don't do the surgery, his brains won't grow the way it's supposed to and we'll have even more problems.

And poor Jeffrey has been such a trooper. He's still wetting the bed sporadically, but his stutter is better, almost gone really. He craves our attention and we try so hard to give it to him, but sometimes Jaxson requires both of us. So most of the time he sits back and quietly entertains himself, but sometimes he's in our faces and other times he is quiet but misbehaving in another room. He's a typical 4 year old boy who loves to play outside and wants to show me how independent he is every day. And thank God he's so well adjusted or we would be in trouble. I am truly blessed to be his mom.

I'll have to cut this short now, my eyes keep dragging shut and I'm attempting to watch Ohio State beat up on Indiana. Please continue to pray for Jaxson. He's got a lot going on and a lot coming up. I need him to be okay!