A few pictures...
My Jadie Bug
My Jadie Bug
Justin and Jaleigh with Santa
So much has gone on the last few months (shocking, right?), so I figured I'd write about it. You should know, contrary to being the daughter of an English teacher, I'm not really blogger material. I do my best, though, and it's a good release.
We are home in Texas for the time being. The plan is to stay through January while Jesse works insane hours to try to cover some of these medical bills we've been racking up. We stayed here with family most of November as well, for the same reason. We're enjoying time with our families, though I'm fairly certain my brood has worn them all out. :)
Jaleigh has been sick off and on for 17 weeks now. She and I got sick two weeks before Jadie was born (end of August), contracted pneumonia the next week and went on antibiotics. She has stayed well anywhere between 4 and 15 days before she gets sick all over again. After the 4th x-ray showing what they thought was pneumonia, they sent her to a pediatric pulmonologist. The pulmonologist ran several tests, including a CT scan and determined she has a (for lack of better word?) mass in her left lung, swollen lymph nodes in her lung, and swollen, excess tissue. Her blood work showed signs of an infection (which is not good at all, seeing as how she was 10 days off antibiotic...). They've given her a preliminary diagnosis of interstitial pneumonitis, which is basically chronic lung infection. It's a very vague diagnosis, but it's a start. At this point, there are so many unknowns. We know she's getting sick every week or so, taking antibiotics and they are treating the symptoms and the infection, but not the underlying problem that is causing the symptoms and infections. The pulmonologist seems to think it resembles TB, but she's asymptomatic and tests so far are showing negative. He did say if she starts with a chronic cough, to come in immediately and retest. He also told me he wants me to leave with two things: 1, He doesn't want me to think they aren't working hard to figure it out, because they are. Unfortunately, since there's no clear answer, we are just going to have to follow it, and 2. He doesn't want me to think it's NOT serious because at this point, all non-serious diagnoses have been ruled out, and anytime something of this nature is present on an infant, it's serious. She is currently on her fourth antibiotic this month and following up with a preventative antibiotic. He wants to keep the infection away as long as possible, so her little body can have a break. We will go back in February for a second CT to see if it has progressed, regressed, or stayed the same. He'll determine what tests need to be done from there. He did say there's a small chance it's a rare viral infection called adenitis, which lasts 3-6 months. On the off chance that IS what we're dealing with, it should be near running its course. Right now, she's on antibiotics (did I say that already...?) and running low-grade fever off and on.
Jaleigh has been sick off and on for 17 weeks now. She and I got sick two weeks before Jadie was born (end of August), contracted pneumonia the next week and went on antibiotics. She has stayed well anywhere between 4 and 15 days before she gets sick all over again. After the 4th x-ray showing what they thought was pneumonia, they sent her to a pediatric pulmonologist. The pulmonologist ran several tests, including a CT scan and determined she has a (for lack of better word?) mass in her left lung, swollen lymph nodes in her lung, and swollen, excess tissue. Her blood work showed signs of an infection (which is not good at all, seeing as how she was 10 days off antibiotic...). They've given her a preliminary diagnosis of interstitial pneumonitis, which is basically chronic lung infection. It's a very vague diagnosis, but it's a start. At this point, there are so many unknowns. We know she's getting sick every week or so, taking antibiotics and they are treating the symptoms and the infection, but not the underlying problem that is causing the symptoms and infections. The pulmonologist seems to think it resembles TB, but she's asymptomatic and tests so far are showing negative. He did say if she starts with a chronic cough, to come in immediately and retest. He also told me he wants me to leave with two things: 1, He doesn't want me to think they aren't working hard to figure it out, because they are. Unfortunately, since there's no clear answer, we are just going to have to follow it, and 2. He doesn't want me to think it's NOT serious because at this point, all non-serious diagnoses have been ruled out, and anytime something of this nature is present on an infant, it's serious. She is currently on her fourth antibiotic this month and following up with a preventative antibiotic. He wants to keep the infection away as long as possible, so her little body can have a break. We will go back in February for a second CT to see if it has progressed, regressed, or stayed the same. He'll determine what tests need to be done from there. He did say there's a small chance it's a rare viral infection called adenitis, which lasts 3-6 months. On the off chance that IS what we're dealing with, it should be near running its course. Right now, she's on antibiotics (did I say that already...?) and running low-grade fever off and on.
We aren't sleeping most nights; we do well to get 3-4 hours. She cries a lot, sits in my lap a lot, and throws a lot of fits. Mommy's exhausted, but God totally keeps me going. There is nothing worse for a mother than the fear of the unknown when it comes to her babies. I thank Him daily, hourly, every minute for my dear husband because, without him, I'd never make it through these long, exhausting days and nights. He is my rock, my everything and I'm just so grateful to have him. So blessed, friends. So blessed.
I'm also blessed to have my big little and my tiny little. They have been so cooperative through all the extra attention Jaleigh Bean has been getting. I try very hard to make time for them and most days, I do well enough but thank GOD they're mild-mannered and calm. And Jadie _usually_ only gets up once or twice a night, opposite Jaleigh. Of course. ;)
My Justin doll has another lump. I'm not sure I ever followed up after our appointment with the genetecist. He basically said we have to wait for more symptoms to pop up before they can officially diagnose him with neurofibromatosis. He said while it is rare, it is possible to have a random neurofibroma. He said if Justin were to ever in his lifetime have another neurofibroma, it would be an automatic diagnosis. I was washing Justin's hair the other day and he has a lump on his face, directly by his ear. I'm calling our ENT after the Holidays to make an appointment, so we can get it all checked out. He's getting so big; I can't believe he's almost five. He's not my toddler anymore and it breaks my heart. He saved me, friends. He and his daddy absolutely, positively saved me. It just kills me to see him so big. He is such an amazing big brother. He loves his sisters dearly and does all he can to help with them. He loves when they nap, though, because then he can play video games or color with mommy! It's a win-win. Love on babies till you wear 'em out, then eat up the mommy time!
Jadie is over three months old now. I'm not really sure where the time has gone, but it's gone. She is absolutely perfect, friends. She's calm, quiet, content. She loves to lay on a blanket and talk to her BFF, the ceiling fan. She has only ever gotten up once a night (except for growth spurts), never had colic, and only cries when she's hungry or has the hiccups. Thank the Lord, because her entire life, Jaleigh has been sick. Oh, friends. And she's beautiful. She doesn't have the dimples or the cleft chin her brother and sister have, but she has these crystal blue eyes that light up and a smile that covers her entire face. She's stunning, absolutely perfect. She looks like a baby doll.
So you may be thinking at this point, what do I need from you. Prayers, friends. Pray for my sweet family. Pray for healing for my Jaleigh Bean, understanding for her daddy and me. Pray for love and peace for her sweet brother, and for continued contentedness for Jadie bug. I know no matter what happens, God will be with us. He may choose to heal her, He may choose to hold her (and us) through this storm. Either way, our faith is in Him and the promise he's given us to never leave our sides.
I was talking to a dear, sweet friend the other day and she told me to have faith. I have faith, friends. It may not be much, but I have it. And here's the thing; God never promised us life wouldn't hurt. He never promised us we wouldn't suffer, either. He does promise us, though, that He will carry us. There is a song very dear to my heart right now, Lay down your burdens by Amy Grant. Lay down your burdens, I will carry you. I will carry you, my child. It goes on to talk about all the things God has done, and how if He can do all that, He can surely carry you through your sorrows. What an amazing song, an amazing testimony to his faithfulness. Just remember, friends. If you are ever overwhelmed, lay down your burdens. He'll carry you.
P.S. Remind me of that next time I decide to lose my mind...
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