It was seriously Christmas in August...er, um September today. The mail lady rang the doorbell this morning and Justin and I bolted for the door. I did my best to pretend for him that it was because we knew his curriculum was coming. That did contribute to my excitement, however; Bean's Minnie Mouse Halloween costume also came today! We hauled everything in and hurried up and opened his curriculum. We wound up using My Father's World for Kindergarten and we're supplementing with Kinder-Math and Alphabet Island. We picked up the alphabet island on a whim Friday and I've spent all day today studying it. I'm so unbelievably excited about it.
I haven't even taught a lesson yet and I'm loving this homeschool stuff. I have been coloring posters for four hours! I got to cut and stack for 2 hours. I seriously feel like I'm in kindergarten again. I LOVE it! I'm so excited and I think that's so important because in order for HIM to be excited, I have to be. I'm so there!
For those of you who follow us because of Bean, thank you for your prayers, love and support for our baby girl. We have witnessed nothing short of a miracle with her in the last couple days. Small miracles are BIG miracles in our world. I should back up; sorry. I do that a lot. I pray one of these days I can be that mom who has it all together and is able to tell a story without going, "Oh. Wait. Back up. Let me tell you about THIS first..."
Our youngest daughter, Jadie (Bug) is this unbelievably happy, healthy baby. She's seriously just been wonderful. She's spunky, but she's calm and cool. A few months ago she started getting some pretty brutal ear infections. We've had now six in the last, eh...six months? Anyway, I took her to pediatric urgent care last night because she was feverish and screaming incessantly. Like, would not give it up. This came after about a week of stuffiness and not sleeping. Long story short, she had raging infection in both ears again. So we're treating it with antibiotics, motrin and homeopathic pain drops. We have also started probiotics on her just because of all the antibiotics she's been on. It pales in comparison to what Bean has been on, but experience is the best way to learn a lesson. I will not let prolonged antibiotic usage wipe out another one of my babe's immune systems.
Anyway, so we got Bug home and I loaded her up. Sister was screaming bloody murder and about 5 seconds after those hyland drops hit her sweet little ears, she passed out on my lap. Out cold.
I gave her motrin (here comes the miracle, wait for it...) and Jaleigh seriously walked over and wanted some! Seriously! Those of you who follow us know the horrible traumatic two weeks we went through trying to get this kid to accept a syringe. We finally just left it alone and put her back on IV meds. So that's the background to the background story...are you still with me? So heck to the yes, I gave the kid some. The next morning when I gave Bug her medicine, Bean wanted some too. More motrin for Bean. This evening when Bug took her meds, Bean took some, too.
Wait. Before you go all "you're the worst mom ever" on me, Bean rarely, if ever gets pain meds but I tell you what. She's slept better the last couple nights than she has in MONTHS. So dang right I gave her motrin. With all that baby has gone through and continues to go through, there's no way there isn't pain. Plus, this opens the door to us starting oral antibiotics. I'm seriously giddy at the potential of calling her ID doctor Tuesday and asking her to give us a prescription for oral antibiotics. So giddy. So excited. So...ready. So ready to get this PICC line out of her arm and move forward.
So. Thank you. Thank you for praying for the small things, like babies taking medicine for a syringe. Small prayer, BIG relief in our world. We're up for recert with home health this week. Maybe instead we can pray for a discharge? Oh, how wonderful that would be!
Big changes coming to our house this week. Our family's turning our world upside down...yet again. Stay tuned, folks. Odds are this is gonna be big. We've got some minor (major?) details to work out and then I'll share! Thank you for continually caring for and praying for our family. We appreciate it more than you know!
Every day is an adventure in the Bennett household. We are Jesse and Jenny, husband and wife of over 8 years and mommy and daddy to three fabulous babes. Justin (Bub)is seven years old, Jaleigh (Bean) is three, and Jadie (Bug) is two. With three kids seven and under, there is NEVER a dull moment in this house. This house is made up of love, grace, chaos, and a whole lot of madness. Honestly? We wouldn't have it any other way!
Sunday, September 2, 2012
Thursday, August 30, 2012
We've been waiting so long for you to show up...
Only for you to put us off another three months. That's right, answers. I'm talking to you. We are not friends, not even a little bit. I don't know why you keep promising to come, but then canceling at the last minute. Annoying is an understatement. You make us sad for our Bean, angry for the past 22 months. I'm done addressing you; I hate that you continue to evade us.
We got a phone call from home health today and they said Bean's antibody work up results were in and that they were abnormal. They also said they were concerned about her left leg pain because the area of her left tibia directly below the knee was hot to the touch. Bean currently has and is being treated for osteomyelitis in her right tibia bone. She is on, and has been on, IV antibiotics for around four months. We have one more month of antibiotics before her treatment is complete. The relief of being on the downhill slide was cut short by concern when she started complaining of LEFT leg pain this weekend. She complains of pain in the tibia area and pain in her toes. So much pain in her toes that we refuse our really adorable Dah-Dah (see: Hot Dog; see: Minnie Mouse) shoes. Anyway, home health called her pulmonologist and we started the business of waiting for a call back.
A little background. Anyone who follows Bean's page (http://www.facebook.com/prayforjaleigh) knows her history and the struggles we've had with getting a clear diagnosis. She is continually fighting off major infections and everyone we encounter is at a loss as to why. We've finally reached that point where it was time to start looking for immune deficiencies. So we took the first step this week when home health came and did an initial antibody work up.
Her hemoglobins are still low, sitting1.4 points from where we were a week or two ago.. Bean has Anemia of Chronic Disease, so we will continue to watch her numbers. Her white blood counts are finally on the low end of normal. They've been very low and we've been watching them closely. We had to switch her infused antibiotic and we're watching her numbers slowly rise back to her normal, which hangs on the low end. Her antibodies were more complicated. Basically she was well below the lowest possible normal, but the test allowed for a discrepancy up or down and if you applied the discrepancy up, it put her on the very, very lowest point of normal. Because the allowed discrepancy put her at the lowest normal point, he wants to retest her in three months. Apparently the work up that follows this test is very extensive and he doesn't want to put her through it if we don't have to. We obviously don't want to traumatize her any more than necessary, but we're disappointed. We felt like we were so close to answers...
That being said, we absolutely adore her doctor. We couldn't ask for a doctor who cares about his patients more. We are frustrated by the process; he's just the messenger if you will. We will continue the journey we started with him because we know he's doing what's best for our daughter. The thought of starting over with another doctor in another state or town terrifies us for our family, for our daughter. So, while we appreciate suggestions to go elsewhere (truly, truly...we do), we will continue on, at least for now, right where we are.
Jaleigh has chronic pneumonitis and right middle lobe syndrome as her official diagnoses with her lungs. They are broad diagnoses, but they're specific enough for us to be conscientious of her symptoms. We know, God willing, that as time goes on, we will finally get our answers. She will be two in October. Her first time being hospitalized with unexplained sickness was at three months old. I know there are so many who have struggled longer and for that, I commend you. As someone who has done it nearly two years, I can't possibly imagine doing it as long as you have. Many props and prayers to each and every one of you.
We got a phone call from home health today and they said Bean's antibody work up results were in and that they were abnormal. They also said they were concerned about her left leg pain because the area of her left tibia directly below the knee was hot to the touch. Bean currently has and is being treated for osteomyelitis in her right tibia bone. She is on, and has been on, IV antibiotics for around four months. We have one more month of antibiotics before her treatment is complete. The relief of being on the downhill slide was cut short by concern when she started complaining of LEFT leg pain this weekend. She complains of pain in the tibia area and pain in her toes. So much pain in her toes that we refuse our really adorable Dah-Dah (see: Hot Dog; see: Minnie Mouse) shoes. Anyway, home health called her pulmonologist and we started the business of waiting for a call back.
A little background. Anyone who follows Bean's page (http://www.facebook.com/prayforjaleigh) knows her history and the struggles we've had with getting a clear diagnosis. She is continually fighting off major infections and everyone we encounter is at a loss as to why. We've finally reached that point where it was time to start looking for immune deficiencies. So we took the first step this week when home health came and did an initial antibody work up.
Her hemoglobins are still low, sitting1.4 points from where we were a week or two ago.. Bean has Anemia of Chronic Disease, so we will continue to watch her numbers. Her white blood counts are finally on the low end of normal. They've been very low and we've been watching them closely. We had to switch her infused antibiotic and we're watching her numbers slowly rise back to her normal, which hangs on the low end. Her antibodies were more complicated. Basically she was well below the lowest possible normal, but the test allowed for a discrepancy up or down and if you applied the discrepancy up, it put her on the very, very lowest point of normal. Because the allowed discrepancy put her at the lowest normal point, he wants to retest her in three months. Apparently the work up that follows this test is very extensive and he doesn't want to put her through it if we don't have to. We obviously don't want to traumatize her any more than necessary, but we're disappointed. We felt like we were so close to answers...
That being said, we absolutely adore her doctor. We couldn't ask for a doctor who cares about his patients more. We are frustrated by the process; he's just the messenger if you will. We will continue the journey we started with him because we know he's doing what's best for our daughter. The thought of starting over with another doctor in another state or town terrifies us for our family, for our daughter. So, while we appreciate suggestions to go elsewhere (truly, truly...we do), we will continue on, at least for now, right where we are.
Jaleigh has chronic pneumonitis and right middle lobe syndrome as her official diagnoses with her lungs. They are broad diagnoses, but they're specific enough for us to be conscientious of her symptoms. We know, God willing, that as time goes on, we will finally get our answers. She will be two in October. Her first time being hospitalized with unexplained sickness was at three months old. I know there are so many who have struggled longer and for that, I commend you. As someone who has done it nearly two years, I can't possibly imagine doing it as long as you have. Many props and prayers to each and every one of you.
Wednesday, August 29, 2012
For some reason we decided to homeschool four days ago...
We went and met with some new friends on Saturday.
Wait. I should back up. Haha, five and a half years ago, we had a son...
We've discussed homeschooling off and on over the last several years, but I'm going to bare my soul here. I've been secretly counting down the days to when I could send every single one of my children to school. Seriously. I have my whole day planned out when Bug goes to kindergarten. I will likely frolic through the living room. Naked. Until at least noon. Then, I'll go eat lunch at a restaurant. Alone. In this dream, my meal will by yummy and hot. My waiter will be kind and I will be able to tip him according to taking care of one clean, pleasant person....not the zoo I typically drag in. Then I will go home and I will nap. I will nap until my nanny (hey, we're dreaming...back off) brings the kids home from school. I can afford a nanny now. I'm not buying diapers or formula. I envision the k-4th the "fabulous years;" post diapers, pre-sports. It's wonderful in my head. The second day of school will be mani/pedi/massage day. I'm secure in how ridiculous and unrealistic...and probably a little selfish this all sounds. I'm okay with it.
So. Anyway. This time last week, my husband came home and informed me his friend from work wanted us to come out for dinner over the weekend. They wanted us, our kids...everything. Seriously?! Someone expected me to bring my brood and that they would behave? Hmmm, that could be fun. I had approximately five days to come up with an excuse as to why we couldn't go. I'm that person, not really the social butterfly I once was...ha.
Saturday came along and I had no excuses. I got up, played Suzy Homemaker and made the dessert I promised my husband I'd make. It is imperative we as wives do our husbands proud and bring stellar desserts to friends' houses when we go (insert eyeroll here...). I reluctantly dressed the kids and myself (no naked frolicing; this isn't the first day of school...) and informed my husband (like the submissive, Godly wife I tend to be) that I had nothing to offer these people. You see, Bean has a lot of medical issues we're in the process of working through. Between those, my recent ACL surgery, and the typical "three five and under" exhaustion, I'm just spent. Not to mention, we have no family within a six hour radius. None. That's my whine fest; it's over now. Anyway, I informed him that I had nothing to offer; no help with dinner, no offering to watch their kids, no recipe swaps. Nothing. I went in fully planning to be that bump on a log we like to sit and make fun of.
We got to their house and their five year old met me at the back of the car. "You're Mrs. Bennett, I presume." Ha! What the what?! A five year old with manners? Ooooh, we're in trouble. He was seriously the sweetest thing I've seen aside from Bean when she's on the floor, having an Emily Rose moment (don't act like you don't know what those are; head spinning, growling, convulsing...). We were greeted at the door by their other two sons, equally polite. Serious; what's their secret?! I met Jesse's friend and his wife and they had all their hair and seemed to be sane people...how did they do it? I MUST know their secrets. They were so warm and welcoming. It did my heart a LOT of good to be there. It's funny how God works; if you just do what He prods you to do, He ensures you're blessed by it. Know what? They didn't ask me to help with dinner, never indicated I bore any responsibility for their children and no one really wanted my cobbler, anyway. It was an evening filled with good fellowship, good food, and only a few "BEAN! PLEASE STOP!" moments. We discussed homeschooling in depth. She showed me their "school room," their curriculum (Any MFW mommas out there?!), and explained to me their beliefs as far education and its place in their house as far as priorities. I was sold. She seriously could've made a million bucks off me that night if she was selling, because I was buying.
Rewind to the day before. I went to register Bub (yes, a week late and counting) for Kindergarten in the public schools. I walked in, told the registrar his school district and grade, to which she rolled her eyes and started explaining to me that his school was so overful of kindergarteners that they didn't know what they were going to do. Get this; over 160 kindergarteners, FOUR teachers, TWO aides. But don't worry, they're trying to hire a fifth kindergarten teacher to help out. Then it won't be SO bad. Let's see. I'm not a REAL smart cookie, but my math says 160/5= 32. THIRTY TWO KINDERGARTENERS in one room with one teacher and potentially one aide, depending on if the aide is floating in his room or not. Blown. Away. I left still needing a Hep A booster I know he'd already gotten with word that I'd go looking for it when I left her. After calling three places to get a vaccine I knew he'd already gotten, it hit me. There was no way on this planet I could send my son to a classroom full of now 40 students (remember, teacher #5 hadn't been hired yet) and expect him to benefit even a little bit. We also struggled with sending him to school when we were doing so much traveling for Bean's doctors and kept such a strict schedule with her. Private school isn't even an option. I refuse to pay ungodly amounts of money just so my child can go to school in a church. I hae diapers and formula to buy. And bows. No extra money for school tuition.
So we dove into the great curriculum hunt and decided we LOVE MFW. We should have it by the weekend and we'll dive right in, hopefully mid-week as I collect all the other pieces. So seriously, for some reason we decided to homeschool four days ago. I've had many friends and family tell me I'm crazy. Some tell me I'm short changing my son. Some tell me there's no way I can possibly do it. Hi, y'all. That just makes me want to do it more. Just to prove you wrong. Oh. And to get my son the best education possible, of course.
So here we go! We're going on an adventure. Care to join us?
Wait. I should back up. Haha, five and a half years ago, we had a son...
We've discussed homeschooling off and on over the last several years, but I'm going to bare my soul here. I've been secretly counting down the days to when I could send every single one of my children to school. Seriously. I have my whole day planned out when Bug goes to kindergarten. I will likely frolic through the living room. Naked. Until at least noon. Then, I'll go eat lunch at a restaurant. Alone. In this dream, my meal will by yummy and hot. My waiter will be kind and I will be able to tip him according to taking care of one clean, pleasant person....not the zoo I typically drag in. Then I will go home and I will nap. I will nap until my nanny (hey, we're dreaming...back off) brings the kids home from school. I can afford a nanny now. I'm not buying diapers or formula. I envision the k-4th the "fabulous years;" post diapers, pre-sports. It's wonderful in my head. The second day of school will be mani/pedi/massage day. I'm secure in how ridiculous and unrealistic...and probably a little selfish this all sounds. I'm okay with it.
So. Anyway. This time last week, my husband came home and informed me his friend from work wanted us to come out for dinner over the weekend. They wanted us, our kids...everything. Seriously?! Someone expected me to bring my brood and that they would behave? Hmmm, that could be fun. I had approximately five days to come up with an excuse as to why we couldn't go. I'm that person, not really the social butterfly I once was...ha.
Saturday came along and I had no excuses. I got up, played Suzy Homemaker and made the dessert I promised my husband I'd make. It is imperative we as wives do our husbands proud and bring stellar desserts to friends' houses when we go (insert eyeroll here...). I reluctantly dressed the kids and myself (no naked frolicing; this isn't the first day of school...) and informed my husband (like the submissive, Godly wife I tend to be) that I had nothing to offer these people. You see, Bean has a lot of medical issues we're in the process of working through. Between those, my recent ACL surgery, and the typical "three five and under" exhaustion, I'm just spent. Not to mention, we have no family within a six hour radius. None. That's my whine fest; it's over now. Anyway, I informed him that I had nothing to offer; no help with dinner, no offering to watch their kids, no recipe swaps. Nothing. I went in fully planning to be that bump on a log we like to sit and make fun of.
We got to their house and their five year old met me at the back of the car. "You're Mrs. Bennett, I presume." Ha! What the what?! A five year old with manners? Ooooh, we're in trouble. He was seriously the sweetest thing I've seen aside from Bean when she's on the floor, having an Emily Rose moment (don't act like you don't know what those are; head spinning, growling, convulsing...). We were greeted at the door by their other two sons, equally polite. Serious; what's their secret?! I met Jesse's friend and his wife and they had all their hair and seemed to be sane people...how did they do it? I MUST know their secrets. They were so warm and welcoming. It did my heart a LOT of good to be there. It's funny how God works; if you just do what He prods you to do, He ensures you're blessed by it. Know what? They didn't ask me to help with dinner, never indicated I bore any responsibility for their children and no one really wanted my cobbler, anyway. It was an evening filled with good fellowship, good food, and only a few "BEAN! PLEASE STOP!" moments. We discussed homeschooling in depth. She showed me their "school room," their curriculum (Any MFW mommas out there?!), and explained to me their beliefs as far education and its place in their house as far as priorities. I was sold. She seriously could've made a million bucks off me that night if she was selling, because I was buying.
Rewind to the day before. I went to register Bub (yes, a week late and counting) for Kindergarten in the public schools. I walked in, told the registrar his school district and grade, to which she rolled her eyes and started explaining to me that his school was so overful of kindergarteners that they didn't know what they were going to do. Get this; over 160 kindergarteners, FOUR teachers, TWO aides. But don't worry, they're trying to hire a fifth kindergarten teacher to help out. Then it won't be SO bad. Let's see. I'm not a REAL smart cookie, but my math says 160/5= 32. THIRTY TWO KINDERGARTENERS in one room with one teacher and potentially one aide, depending on if the aide is floating in his room or not. Blown. Away. I left still needing a Hep A booster I know he'd already gotten with word that I'd go looking for it when I left her. After calling three places to get a vaccine I knew he'd already gotten, it hit me. There was no way on this planet I could send my son to a classroom full of now 40 students (remember, teacher #5 hadn't been hired yet) and expect him to benefit even a little bit. We also struggled with sending him to school when we were doing so much traveling for Bean's doctors and kept such a strict schedule with her. Private school isn't even an option. I refuse to pay ungodly amounts of money just so my child can go to school in a church. I hae diapers and formula to buy. And bows. No extra money for school tuition.
So we dove into the great curriculum hunt and decided we LOVE MFW. We should have it by the weekend and we'll dive right in, hopefully mid-week as I collect all the other pieces. So seriously, for some reason we decided to homeschool four days ago. I've had many friends and family tell me I'm crazy. Some tell me I'm short changing my son. Some tell me there's no way I can possibly do it. Hi, y'all. That just makes me want to do it more. Just to prove you wrong. Oh. And to get my son the best education possible, of course.
So here we go! We're going on an adventure. Care to join us?
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