We came home Sunday afternoon, thanks to the Weedsport Volunteer Fire Department allowing us to use their pediatric backboard to transport the little guy. Because both of his femurs are broken, he has to lay on his back and is unable to tolerate sitting in a car seat. Our first night was pretty rough, one of the things that has taken a few days to learn is that he must lay on something like a pillow to be comfortable because of the harness he must wear. The first night, we were hesitant to use anything like a pillow as common medical opinion is that those are dangerous for unsupervised sleeping. The second night we arranged a pillow in his bassinet and he sleeps much better on that. The doctor things that's a good arrangement, and shouldn't pose any danger.
Changing Liam is a two person operation, one must lift him and support his legs, while the other does the clean up work. Getting diapers on and off is exceedingly difficult due to the positions of his harness. We have gotten things down pretty good, but it's very hard for us to entrust anyone else to help out because every diaper change is a painful experience for him. There isn't much worse than having to hurt you own child every couple of hours, and it's taking it's toll on mom and dad. Also, holding him to burp him is very challenging because of the positions of his legs.
Erica was sent to the hospital yesterday for a Cat Scan of her lungs due to some shortness of breath issues. She's also been having a lot of heart fluttering, so we have to see her cardiologist on Friday. The Cat Scan was normal, and we're hoping that it's just anxiety driving these symptoms, but the physician need to be sure there isn't something more at work. She seems to be doing a bit better today.
Today we saw the Pediatric Orthopedist, and then his Pediatrician. Just getting to the appointments was a huge challenge, as a regular car seat just doesn't work with him. Fortunately, my sister Beth was able to work with another agency and supplied us with an infant car bed, that he buckles to, and then is strapped into the car. It is quite difficult to fish the seatbelt in and out of that thing every time he has to come in and out, but mom and I are getting better. Fortunately, once in, he seems pretty comfortable in there - we even decided to try to be human beings and took a quick lunch at Tully's today after his visits.
The Orthopedist determined that before we address his club feet, we need to heal his femur fractures, and so we must continue to use this harness for another two weeks. We were desperately hoping that they would cast him so that we can handle him better, and stop bumping him and causing him pain. The physician is sure this the best way for him, a cast would have adverse effects on his skin, and provide no benefit with healing. Gotta trust the doctors I suppose, but that was staggering news because we had held so much hope that today would bring him (and us) some relief. His pediatrician is happy with his weight gain and find that he is ok other than his orthopedic concerns. Once his fractures are resolved, he will require serial casting, which is a cast, on each leg, once a week for several weeks. This is hoped to get his feet into the right position, but the doctor did mention that sometimes surgery is required. After that, we can start trying to determine if he will have any motion in his knees, hips and ankles. Right now, all these joints are not moving much, if at all. As many of you know, my youngest sister, and also my fathers sister, both have significant mobility disabilities requiring crutches and braces for walking. We are trying to hope for the best, but the fear is ever rising that our son my not be able to walk normally. Just typing that is gut wrenching.
So that's where we are at. I've taken work off through the end of next week to ensure that I can be around to take care of this guy full time. We don't really know where this road is going to take us. Right now we are just trying to survive. We are both really sleep deprived, and that's making a really bad situation even worse. I've cried more in the past week than I have in my entire life. We're both trying to resume eating normally, even that's a challenge - those of you that know me would be shocked to learn that I've eaten about 4 meals since coming home Sunday night. My parents came for a bit last night to give us a break, I spent 3 and a half hours trying to sleep, but couldn't - it was just a constant anxiety attack. Finally, I was able to drop off at about 1am, but by 2:30am I was back up to help take care of the little guy. He did let us both sleep pretty soundly from 4am to about 7:30am.
Everybody keeps asking what the can do to help - thank you for reaching out. I know we're going to need a lot of help, right now we need your prayers. I don't know what the future holds with any of this. As I look to the future I'm terrified of the medical bills, and having the means to support this kid, meet his needs, be a good dad, on and on and on. I just don't know how we're going to do it. For now, we've reached out to a few of you for help with meals, and we may do that some more down the road. Perhaps as I get back into work we can arrange for some help during the day. Please continue to pray for use as you think of us, for strength to hold on, to make good decisions, and get through this.
Please don't feel slighted if you've called or texted one of us and we haven't returned your correspondence, we've been overwhelmed with all of this and are prioritizing our activities, and sometimes we just don't have the time or energy to respond. I'll try to keep the updates coming on a somewhat regular basis.
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