Today is National Neonatal Nurses Day. Can I get a holla?
Luke was blessed with so many amazing medical professionals during his NICU stay. It was the nurses, though, that trudged with us through most of the stay. Yes, our doctors were amazing, without a doubt. But...
It was Beth who held my hand when we found out about yet another horrible diagonsis.
It was Nicole who stood at the door at Dell and greeted us with a "We'll take great care of you and Luke" and meant every word.
It was Lisa who had OCD like me and loved on Luke during the night shift.
It was Leah who walked behind Luke as he was wheeled into emergency surgery - at my urgent plea - and gave me peace of mind I may never have had otherwise.
It was Janet who kept me supplied with Dr Pepper and pacifiers.
It was Dillon who cried big, fat, happy tears when I told her Luke was going home.
It was Bob and Gunther who first recognized Luke's onset of NEC. They likely saved his life.
And the list just keeps going. These nurses were our taste of heaven in the middle of hell. Thank you will never, ever be enough. We love them, to the moon and back.
Showing posts with label luke. Show all posts
Showing posts with label luke. Show all posts
Thursday, September 15, 2011
Wednesday, September 14, 2011
Top Ten: The "News"
Luke has had a busy few weeks, I think at last count we've seen 7 or 8 specialists. I feel like I can give his history and the latest update in my sleep. To be honest, it was an avalanche of information. And to be even more honest, it was mostly good news. It was just SO much information and SO many emotions. I'm not trying to be all dramatic, I'm just telling you how I feel.
That's what happens when you go see all those doctors so close to a birthday. Lots of things are starting to bubble over. I kinda feel like the pot has been on a low simmer for the past few months, and it just got turned to high. September is turning into a tough month for me, emotionally. A friend blogged recently about the birthday of her son (he was a preemie, too) and how the day itself felt a little - well - not so huggy, happy, skippy. She may not have used those exact words, but work with me. It just dredges up so many things - the anticipation of his birth, the unknowns, the scary days, the kick you in your gut days, the happy stuff, the awesome people...you see where I'm going with all that? I suppose those that have walked in our shoes understand and many more can empathize. I'm sure I'll be blogging about it all next week...said BIG boy is turning two on Sunday. Not. Possible.
That turned into a way long intro about all the news. Sorry. Here goes:
TOP TEN: THINGS WE LEARNED ABOUT LUKE
1. He has even more rockstar specialists. Below is his developmental pediatrician, Dr. Fasci, his geneticist, Dr. Immken and his cardiologist, Dr. Johnson. You will get the skinny on all three later this week and how much I heart them all, cross my heart.
That's what happens when you go see all those doctors so close to a birthday. Lots of things are starting to bubble over. I kinda feel like the pot has been on a low simmer for the past few months, and it just got turned to high. September is turning into a tough month for me, emotionally. A friend blogged recently about the birthday of her son (he was a preemie, too) and how the day itself felt a little - well - not so huggy, happy, skippy. She may not have used those exact words, but work with me. It just dredges up so many things - the anticipation of his birth, the unknowns, the scary days, the kick you in your gut days, the happy stuff, the awesome people...you see where I'm going with all that? I suppose those that have walked in our shoes understand and many more can empathize. I'm sure I'll be blogging about it all next week...said BIG boy is turning two on Sunday. Not. Possible.
That turned into a way long intro about all the news. Sorry. Here goes:
TOP TEN: THINGS WE LEARNED ABOUT LUKE
1. He has even more rockstar specialists. Below is his developmental pediatrician, Dr. Fasci, his geneticist, Dr. Immken and his cardiologist, Dr. Johnson. You will get the skinny on all three later this week and how much I heart them all, cross my heart.
2. Luke does NOT have to have heart surgery!!!!!!!!!!!!!!!!!!!!! Well, at least in the near future. He still has the two holes in his heart (VSD and PDA), but they are not causing secondary problems, a super enlarged heart or weight gain issues. So, we're just watchin' 'em. I like it.
3. Luke is delayed about a year in speech. Yeah, that one really hurt to hear. We are working hard to get him evaluated for therapy and hope to start that twice weekly gig soon...in addition to his once weekly occupational/eating therapy. Can I just move in up there?? Good thing I love those therapists.
4. Luke social skills are "above average" - he's testing at 26 months. I mean, he can give fist bumps, high fives and fall like a tree. Those are skillz.
5. Luke is still delayed in gross motor and fine motor skills, but only by three and one month, respectively. That's a FAR cry from where we were six months ago. He was delayed almost 9 months back then.
6. Luke's eating stinks. Yeah, thanks for the newsflash. At least he's not throwing up 4x a day anymore.
7. Luke's genetic diagnosis is....CL. As in, CRAPPY LUCK. There is no syndrome for all his quirks and anomolies. He's an original, that's for sure.
8. While we didn't get to fire any specialists (I know, so sad about that), we are starting to move to the annual visits, versus the every 3, 6 or 9 months. That makes me, and my bank account, very happy.
9. The pediatric orthopedist is being a real horse's behind. {content edited for the PG version}
10. Luke is a miracle. Through and through. Again his doctors all said how much they loved seeing his progress and how amazed they were at his tenacity. I guess when you see him every six months you really see the changes. It was a reminder to me to look backward instead of forward. Where were we six months ago? A year? Two years? Oh, sweet Luke the lessons you have taught me have brought me to my knees in prayer and to my feet in thanksgiving.
Tuesday, September 13, 2011
First day of PK!
Oh sweet Clare Bear - last Tuesday was just awesome. She started her first day of PK and practically left Scott, Luke and I at the curb. I had to beg to get some photos, but in true form, she showed off for the camera. Yep, definitely a Whitaker.
I only picked out her clothes, she selected the bow and matching bracelet. And she was VERY adamant about the bracelet. "It's so pretty, momma. I have to wear it." Might I add that it is awesome that I finally have a girl who wants to wear dresses everyday? It's very "Clare."
She barely gave us a second glance as we walked out the door. She did stop, however, to give her brother a kiss and hug. Clare, I pray it is an awesome year of learning, growing and creating. As much as I don't want you to leave the house, I am loving the person you're becoming. Thanks for letting me be your momma.
I only picked out her clothes, she selected the bow and matching bracelet. And she was VERY adamant about the bracelet. "It's so pretty, momma. I have to wear it." Might I add that it is awesome that I finally have a girl who wants to wear dresses everyday? It's very "Clare."
She barely gave us a second glance as we walked out the door. She did stop, however, to give her brother a kiss and hug. Clare, I pray it is an awesome year of learning, growing and creating. As much as I don't want you to leave the house, I am loving the person you're becoming. Thanks for letting me be your momma.
Thursday, September 1, 2011
Luke Update 9.1.11
Sweet boy Luke had his follow-up with his gastroenterologist, Dr. Berhane, this week. I was actually quite thankful to see her. On Tuesday's post I told you about the awesome couple overnight date night. What I left out was the ick that happened right after dinner. Luke had too much in his mouth, I swept some food out, gave him some Boost (his supplement) to drink and then he promptly threw up ALL OVER the highchair. While Scott bathed him and mom and dad cleaned up the floor, I took the highchair outside and hosed it down.
Not the best way to leave.
But, I put him to bed after all the crazy and prayed for the best. Just as we walked in the door from our date the next morning, Luke threw up ALL OVER the entryway. As my mom said, "Well, at least it was on the tile." So, really, since Saturday he's been a little urpy, a little less active and less interested in eating. Big sigh here.
I did send a text to his OT and she was wonderful enough to call me back. We chatted for a bit and her reassurance and advice really helped improve the situation. If not for her and Scott, I just might've checked myself into Shoal Creek.
Ok, back to the doctor visit. Luke's weight was significantly lower, he went from 20 lbs. 14 oz. in mid-July to 19 lbs. 3 oz. this week.
************************************ {string of words I should not type on the blog}
We talked, and talked, and talked about our options. I think there's a part of Dr. B that wishes we would've just put the g-tube in last November. There are days I'm not sure, but mostly I stick to my guns. I think we're doing the right thing. Our immediate goal is to get Luke back to baseline, back to 21 pounds. We return in 6 weeks to check his progress. The next goal is to get him eating, like really eating. We have a speech therapy evaluation coming up soon and hopefully that therapy, combined with occupational therapy will help us jump a big hurdle.
This is a marathon, Dr. B, reminded me. Doesn't she know I'm more of an organized sprinter?
It's possible that g-tube surgery could still be in Luke's future, but my heart is telling me to stay the course. To keep going to therapy, to keep offering food and to keep working on his sensory challenges. It may be a year, or much longer, before Luke eats like other kids. I have confidence we'll get there, though. It's just hard to hear other parents talk about how great their kid eats or how chubby they are. Then I remember how I've been that mom four times over. The perspective can be a ... well, you know.
This week's visit was yet another reminder of how Luke's specialists pretty much live in a state of awesomeness. What a gift that we have Dr. B as his gastro. She is so patient, so kind, so understanding, so honest. And, she even managed to get Luke on her lap for a photo!
Next week we have three biggies: cardiology (the vote will be in on surgery - eeek), developmental pediatrician and geneticist (all the results come back from the testing). Big, big week. Pray for us. Mostly just pray that I don't completely wig out with all that information, that I don't forget to take my camera and that we might be able to fire one of them :) I'm itching to ditch a specialist, aren't you?
Not the best way to leave.
But, I put him to bed after all the crazy and prayed for the best. Just as we walked in the door from our date the next morning, Luke threw up ALL OVER the entryway. As my mom said, "Well, at least it was on the tile." So, really, since Saturday he's been a little urpy, a little less active and less interested in eating. Big sigh here.
I did send a text to his OT and she was wonderful enough to call me back. We chatted for a bit and her reassurance and advice really helped improve the situation. If not for her and Scott, I just might've checked myself into Shoal Creek.
Ok, back to the doctor visit. Luke's weight was significantly lower, he went from 20 lbs. 14 oz. in mid-July to 19 lbs. 3 oz. this week.
************************************ {string of words I should not type on the blog}
We talked, and talked, and talked about our options. I think there's a part of Dr. B that wishes we would've just put the g-tube in last November. There are days I'm not sure, but mostly I stick to my guns. I think we're doing the right thing. Our immediate goal is to get Luke back to baseline, back to 21 pounds. We return in 6 weeks to check his progress. The next goal is to get him eating, like really eating. We have a speech therapy evaluation coming up soon and hopefully that therapy, combined with occupational therapy will help us jump a big hurdle.
This is a marathon, Dr. B, reminded me. Doesn't she know I'm more of an organized sprinter?
It's possible that g-tube surgery could still be in Luke's future, but my heart is telling me to stay the course. To keep going to therapy, to keep offering food and to keep working on his sensory challenges. It may be a year, or much longer, before Luke eats like other kids. I have confidence we'll get there, though. It's just hard to hear other parents talk about how great their kid eats or how chubby they are. Then I remember how I've been that mom four times over. The perspective can be a ... well, you know.
This week's visit was yet another reminder of how Luke's specialists pretty much live in a state of awesomeness. What a gift that we have Dr. B as his gastro. She is so patient, so kind, so understanding, so honest. And, she even managed to get Luke on her lap for a photo!
Next week we have three biggies: cardiology (the vote will be in on surgery - eeek), developmental pediatrician and geneticist (all the results come back from the testing). Big, big week. Pray for us. Mostly just pray that I don't completely wig out with all that information, that I don't forget to take my camera and that we might be able to fire one of them :) I'm itching to ditch a specialist, aren't you?
Monday, August 29, 2011
APB
If anybody happens to see "catch a break", please send her to our house.
Scott and I had a lovely Saturday evening/Sunday morning - alone, sans kids - away from the house. First time we've BOTH been away from Luke at the same time. Ever. So needed. More on that later in the week.
Our welcome home present? Luke throwing up all over the entry floor. Yep, welcome home. We took him to the doctor yesterday afternoon and it looks like a nasty GI bug. You know, just what he needs. Something that's hard on his belly. Thank you Augmentin for getting rid of the pneumonia (yes, the follow-up xrays confirmed that), but NO THANK YOU for messing with his insides.
I'm thinking of making a new bumper sticker: "Don't Mess With Luke's Mom." Not quite the same ring, but I'm a whole lot meaner than the State Highway Patrol.
Anyhoo. You're HDYDI is postponed again. Sigh. Next week? Dare I dream?
Scott and I had a lovely Saturday evening/Sunday morning - alone, sans kids - away from the house. First time we've BOTH been away from Luke at the same time. Ever. So needed. More on that later in the week.
Our welcome home present? Luke throwing up all over the entry floor. Yep, welcome home. We took him to the doctor yesterday afternoon and it looks like a nasty GI bug. You know, just what he needs. Something that's hard on his belly. Thank you Augmentin for getting rid of the pneumonia (yes, the follow-up xrays confirmed that), but NO THANK YOU for messing with his insides.
I'm thinking of making a new bumper sticker: "Don't Mess With Luke's Mom." Not quite the same ring, but I'm a whole lot meaner than the State Highway Patrol.
Anyhoo. You're HDYDI is postponed again. Sigh. Next week? Dare I dream?
Thursday, August 25, 2011
Luke Update 8.25.11
Monday morning, we headed to Dell for Luke's now-annual neurosurgery visit. I've talked a lot about the rockstars that make up Luke's specialist band. I think lead singer is a tie between Dr. Meyer (his general surgeon) and Dr. George (the neurosurgeon). But, since I recently fired Dr. M, I guess that bumped Dr. G up to lead vocalist. As my spine surgeon said last spring, Dr. G really is the whole package - smarts, research and bedside manner.
Luke's brain is complicated. HA. Just like his momma. When he had his initial MRI in the NICU we thought the image was showing bilateral arachnoid cysts (say what??). Those would be bumps on both sides of his brain skull, in between the skull and the dura (the protective layer over our brains). After further imaging and growing by Luke, we discovered they were not cysts after all. Instead, his skull just never formed on the back of his head. So many growth patterns were interrupted in utero - kidneys, brain, heart, spinal cord, testicles - and this was just another example. Luke has about an 8cm x 4cm gap of brain skull that's missing. Amazingly, that doesn't freak me out. Proof that it takes a flippin' freight train to do that these days.
For months, we've been praying it closed. We hoped that when he wore his helmet last summer that it would help. I dreamed about this week's visit and hearing Dr. G say, "Oh THAT hole? It's nothing, really. It will close on its own. See you in a year for a follow-up." But, alas, none of that happened. Because the skull never formed, it will not close on it's own. We will do a CT scan next fall to determine the best place in which to pull bone - ribs, hip, existing skull, etc. - to "fill" the hole. Dr G has found that using existing bone from the patient, rather than a foreign object, is better in that the bone grows with the patient. We'll also employ the help of another specialist, plastics, to ensure Luke's hairline doesn't go all screwbally. Yes, that's a medical term.
Now, we wait. For the record, I'm not a patient person. I hate waiting. As with everything that is Luke, though, I'm learning that God is trying to teach me so many lessons through that sweet boy. He's teaching me advocacy, tenacity, humor, compassion, trust...and patience.
So often I think what might've been and I am reminded to be thankful for our reality. IUGR babies don't typically make it to 36 weeks. If Luke hadn't, I shudder to think how MANY MORE challenges he would face. Quite honestly, I wonder if he would've lived. No doubt, it was God's first two miracles that have affected me the most: allowing us to conceive and allowing Luke to live in utero for so long. Thank you, Jesus.
We still have four HUGE specialist visits to go. And, as I checked the digital files, not a single one of those doctor's faces have graced the blog. Oh, aren't you in for some eye candy! Scott says I only choose the smart, good-looking doctors. Whatev. I say, if I have to spend that much time with them, I might as well :)
Luke's brain is complicated. HA. Just like his momma. When he had his initial MRI in the NICU we thought the image was showing bilateral arachnoid cysts (say what??). Those would be bumps on both sides of his brain skull, in between the skull and the dura (the protective layer over our brains). After further imaging and growing by Luke, we discovered they were not cysts after all. Instead, his skull just never formed on the back of his head. So many growth patterns were interrupted in utero - kidneys, brain, heart, spinal cord, testicles - and this was just another example. Luke has about an 8cm x 4cm gap of brain skull that's missing. Amazingly, that doesn't freak me out. Proof that it takes a flippin' freight train to do that these days.
For months, we've been praying it closed. We hoped that when he wore his helmet last summer that it would help. I dreamed about this week's visit and hearing Dr. G say, "Oh THAT hole? It's nothing, really. It will close on its own. See you in a year for a follow-up." But, alas, none of that happened. Because the skull never formed, it will not close on it's own. We will do a CT scan next fall to determine the best place in which to pull bone - ribs, hip, existing skull, etc. - to "fill" the hole. Dr G has found that using existing bone from the patient, rather than a foreign object, is better in that the bone grows with the patient. We'll also employ the help of another specialist, plastics, to ensure Luke's hairline doesn't go all screwbally. Yes, that's a medical term.
Now, we wait. For the record, I'm not a patient person. I hate waiting. As with everything that is Luke, though, I'm learning that God is trying to teach me so many lessons through that sweet boy. He's teaching me advocacy, tenacity, humor, compassion, trust...and patience.
So often I think what might've been and I am reminded to be thankful for our reality. IUGR babies don't typically make it to 36 weeks. If Luke hadn't, I shudder to think how MANY MORE challenges he would face. Quite honestly, I wonder if he would've lived. No doubt, it was God's first two miracles that have affected me the most: allowing us to conceive and allowing Luke to live in utero for so long. Thank you, Jesus.
We still have four HUGE specialist visits to go. And, as I checked the digital files, not a single one of those doctor's faces have graced the blog. Oh, aren't you in for some eye candy! Scott says I only choose the smart, good-looking doctors. Whatev. I say, if I have to spend that much time with them, I might as well :)
Waiting in the waiting room - and let me tell you -it was a rockstar wait.
Dr G and "I'm running out of this picture" Luke
Tuesday, August 23, 2011
Dominican Sister Love
You've heard me rave about the Ann Arbor Dominicans we have here in our Diocese. We love them and cherish their influence on our children. Before we knew them, though, we were introduced to an equally fine bunch of Dominicans from Nashville.
Back in 2000, Scott and I emceed a teen retreat for 700 at our parish, "Destination Jesus." Parishes from around the diocese attend and the following year, when we emceed again, a group from St. Cecilia Academy joined in the fun. It was there I met Sr. Anna Laura (name ring a bell??) I was eight and a half months pregnant and having the time of my life. To be perfectly honest, I didn't know they made Sisters that: 1) young, 2) joyful, 3) prayerful and 4) personable. Sr. Anna Laura was from Arkansas, had a twang like me and laughed like nobody's business. When she shared her vocation story I fell even more in love with her as a person. I guess you could say she and those Sisters taught me how to be a better wife - and soon - a better mom.
She returned to DJ, then I took a couple of trips back to Nashville to help put on their first "Teens with Christ" retreat and a day retreat at St. Cecilia. Sr. Anna Laura was moved to a new mission, we moved back to Texas, but the friendship continued. Somehow life always found us. She presented at an Aggie Awakening, we made the trek to Sommerville. We were on our way to Indy and stopped at the Motherhouse to say howdy. The last time we saw each other was July 2004. John Paul was a baby and Will was only 4. A lifetime ago. Our yearly Christmas letters kept us in touch and I was always grateful to receive hers. When God gave us a baby girl, there was never a question what her name would be, Anna-Laura Grace.
Then, this Wednesday, my cell phone rings. I didn't recognize the number, so I sent it to voicemail. When I saw the message pop up, I listened and almost cried. Sr. Anna Laura was on the other end of the line and she and two others Sisters were in Houston, preparing to launch Frassati Catholic High School. Note to my Houstonian friends, if you live in Spring/Woodlands, the school opens Fall 2013. Get your kids enrolled!! I tell ya, that God works in mysterious ways. Our running joke was that somehow we would pray them to Texas, guess it only took ten years :) Now look at the Lonestar State, we have Dominicans everywhere!
Saturday morning, a sweet knock, a "Hey Whitaker's" and a lovely laugh rang through our house. Sr. Anna Laura, Sr. John Paul and Sr. Mary Albert walked through our door. It was a lovely afternoon of visiting, talking about the new high school and praying. John Paul was stoked to have a Sister "named after him" (HA) and Clare kept wondering where her Sister might be. The conversations we shared were awesome and it was great to see an old friend and meet two new ones. Just before they left, we were able to attend the Saturday Vigil Mass. We were given a great gift of the Sisters time on Saturday and it is one I will always cherish. How blessed are we to know two amazing groups of Dominican Sisters.
I had to pause for a bit on Saturday. Sr. Anna Laura and I were visting in the kitchen and it struck me. So many people we love have walked through the doors of our home and shared a meal with us. There are such precious memories of family and friends in our home. Everytime I look around our home, I am reminded of those gifts. I truly believe, when you invite someone into your home, you're inviting them into your life.
Our love is equal for both those groups of Sisters and my life has been permanently altered because of their presence. Thanks be to God!
The Anna Laura's :)
Will, in deep conversation with Sr. John Paul and Sr. Mary Albert about something riveting...
The whole bunch!
I used to joke with Sr. Anna Laura that it was a good thing I met Scott before her, otherwise I might've joined them in Nashville. But, Scott is THE reason why I converted to Catholicism and it's likely I would've never give the Sisters a second glance if I'd remained Protestant. Life is as it should be.
Is that just total joy or what?
Back in 2000, Scott and I emceed a teen retreat for 700 at our parish, "Destination Jesus." Parishes from around the diocese attend and the following year, when we emceed again, a group from St. Cecilia Academy joined in the fun. It was there I met Sr. Anna Laura (name ring a bell??) I was eight and a half months pregnant and having the time of my life. To be perfectly honest, I didn't know they made Sisters that: 1) young, 2) joyful, 3) prayerful and 4) personable. Sr. Anna Laura was from Arkansas, had a twang like me and laughed like nobody's business. When she shared her vocation story I fell even more in love with her as a person. I guess you could say she and those Sisters taught me how to be a better wife - and soon - a better mom.
She returned to DJ, then I took a couple of trips back to Nashville to help put on their first "Teens with Christ" retreat and a day retreat at St. Cecilia. Sr. Anna Laura was moved to a new mission, we moved back to Texas, but the friendship continued. Somehow life always found us. She presented at an Aggie Awakening, we made the trek to Sommerville. We were on our way to Indy and stopped at the Motherhouse to say howdy. The last time we saw each other was July 2004. John Paul was a baby and Will was only 4. A lifetime ago. Our yearly Christmas letters kept us in touch and I was always grateful to receive hers. When God gave us a baby girl, there was never a question what her name would be, Anna-Laura Grace.
Then, this Wednesday, my cell phone rings. I didn't recognize the number, so I sent it to voicemail. When I saw the message pop up, I listened and almost cried. Sr. Anna Laura was on the other end of the line and she and two others Sisters were in Houston, preparing to launch Frassati Catholic High School. Note to my Houstonian friends, if you live in Spring/Woodlands, the school opens Fall 2013. Get your kids enrolled!! I tell ya, that God works in mysterious ways. Our running joke was that somehow we would pray them to Texas, guess it only took ten years :) Now look at the Lonestar State, we have Dominicans everywhere!
Saturday morning, a sweet knock, a "Hey Whitaker's" and a lovely laugh rang through our house. Sr. Anna Laura, Sr. John Paul and Sr. Mary Albert walked through our door. It was a lovely afternoon of visiting, talking about the new high school and praying. John Paul was stoked to have a Sister "named after him" (HA) and Clare kept wondering where her Sister might be. The conversations we shared were awesome and it was great to see an old friend and meet two new ones. Just before they left, we were able to attend the Saturday Vigil Mass. We were given a great gift of the Sisters time on Saturday and it is one I will always cherish. How blessed are we to know two amazing groups of Dominican Sisters.
I had to pause for a bit on Saturday. Sr. Anna Laura and I were visting in the kitchen and it struck me. So many people we love have walked through the doors of our home and shared a meal with us. There are such precious memories of family and friends in our home. Everytime I look around our home, I am reminded of those gifts. I truly believe, when you invite someone into your home, you're inviting them into your life.
Our love is equal for both those groups of Sisters and my life has been permanently altered because of their presence. Thanks be to God!
The Anna Laura's :)
Will, in deep conversation with Sr. John Paul and Sr. Mary Albert about something riveting...
The whole bunch!
I used to joke with Sr. Anna Laura that it was a good thing I met Scott before her, otherwise I might've joined them in Nashville. But, Scott is THE reason why I converted to Catholicism and it's likely I would've never give the Sisters a second glance if I'd remained Protestant. Life is as it should be.
Is that just total joy or what?
Monday, August 22, 2011
Prayers for Luke!
It's a big three weeks for Master Luke. Beginning this morning, he has five specialists visits during the next three weeks.
On tap today? Neurosurgery aka brain surgeon. It's a biggie. We've been flirting with surgery to close the gap in his skull. To date, it hasn't closed on its own and while we've been praying it closed, I still think it's the same size it was last year. We'll likely talk about our options: waiting vs. closing it surgically and what that timeline may look like.
Our doctor is a rockstar, so that always makes it easier. He's never graced the pages of the blog, so expect to see a photo of him and Luke later today (I hope!)
HDYDI will return next week.
On tap today? Neurosurgery aka brain surgeon. It's a biggie. We've been flirting with surgery to close the gap in his skull. To date, it hasn't closed on its own and while we've been praying it closed, I still think it's the same size it was last year. We'll likely talk about our options: waiting vs. closing it surgically and what that timeline may look like.
Our doctor is a rockstar, so that always makes it easier. He's never graced the pages of the blog, so expect to see a photo of him and Luke later today (I hope!)
HDYDI will return next week.
Tuesday, August 16, 2011
Back to school
Every year I think...
...summer will last longer.
...we will be more prepared for the first day.
...I will not cry.
...I can freeze time.
...my kids will always want their picture taken with the family.
And every year, I am wrong.
Summer was fabulous until we hit the 4th of July. Then it just stank. But, it is what it is. No use lamenting all the things we didn't get to do. Time to make up for it and have a great fall. Flag football has already started for the boys and they are loving it. Bring on the pigskin.
I've been feeling really cruddy since Friday. Come to find out, I have bronchitis. Yippee {sarcasm font}. So, I did NOT put my cell phone by the back door. I did NOT put the CF card back in the camera. And, I did NOT make sure Clare's shoes were out. Hence, we got to school and realized we left all three said items AT THE HOUSE. Scott dashed home and made it back just in time for us to snap a few pics before sending everyone to their classrooms. I guess the second day of school pictures will be just as cute. I can already hear the kids groaning. Tough stuff. They're doing it anyway. Perk of being the parent.
The tears didn't hit until mid-morning when I realized the craziness pre-empted them. That was probably a good thing. It's just hard (and awesome) to see your babies grow up, you know?
Anna-Laura bounded into our room at 6:45 this morning, dressed and ready to go. I tell you now. There is not a child on earth more excited about going to school than her. I pray it is always that way. Even though the boys grumbled a little bit, they were pretty excited to see their friends and meet their teachers, too. JP was over the moon when he spotted the word search (his all-time favorite thing to do) on his desk. The teacher even overheard him say at orientation how he always sat in the back and so she moved him right up front. Now that was thoughtful. Will, I'm sure, just wanted to die when I summoned him from his desk to take a picture. I'll be forgiven at pick-up, I hope. I just couldn't let the first day go by without snapping a photo.
I pray this year is an awesome one. Those kids of mine are pretty special and I look forward to inviting three new teachers to join our family this year. I hope your first day went as beautifully!
Oh, may I add that Clare was NOT having this photo? Her foot hurt so we all just went to where she was standing and took the photo anyway. A grumpy Clare is better than no Clare!
...summer will last longer.
...we will be more prepared for the first day.
...I will not cry.
...I can freeze time.
...my kids will always want their picture taken with the family.
And every year, I am wrong.
Summer was fabulous until we hit the 4th of July. Then it just stank. But, it is what it is. No use lamenting all the things we didn't get to do. Time to make up for it and have a great fall. Flag football has already started for the boys and they are loving it. Bring on the pigskin.
I've been feeling really cruddy since Friday. Come to find out, I have bronchitis. Yippee {sarcasm font}. So, I did NOT put my cell phone by the back door. I did NOT put the CF card back in the camera. And, I did NOT make sure Clare's shoes were out. Hence, we got to school and realized we left all three said items AT THE HOUSE. Scott dashed home and made it back just in time for us to snap a few pics before sending everyone to their classrooms. I guess the second day of school pictures will be just as cute. I can already hear the kids groaning. Tough stuff. They're doing it anyway. Perk of being the parent.
The tears didn't hit until mid-morning when I realized the craziness pre-empted them. That was probably a good thing. It's just hard (and awesome) to see your babies grow up, you know?
Anna-Laura bounded into our room at 6:45 this morning, dressed and ready to go. I tell you now. There is not a child on earth more excited about going to school than her. I pray it is always that way. Even though the boys grumbled a little bit, they were pretty excited to see their friends and meet their teachers, too. JP was over the moon when he spotted the word search (his all-time favorite thing to do) on his desk. The teacher even overheard him say at orientation how he always sat in the back and so she moved him right up front. Now that was thoughtful. Will, I'm sure, just wanted to die when I summoned him from his desk to take a picture. I'll be forgiven at pick-up, I hope. I just couldn't let the first day go by without snapping a photo.
I pray this year is an awesome one. Those kids of mine are pretty special and I look forward to inviting three new teachers to join our family this year. I hope your first day went as beautifully!
Oh, may I add that Clare was NOT having this photo? Her foot hurt so we all just went to where she was standing and took the photo anyway. A grumpy Clare is better than no Clare!
Thursday, August 11, 2011
Really? Really.
Sometimes you just need to cry in your minivan.
Sometimes you need to say words that only God will hear.
Sometimes you wonder why you pay the insurance company when you should really be paying your pediatrician's lighting bill.
Sometimes you just feel like one more bad break might just break you.
Then you wipe away the tears, dose the meds, put a bandaid on the stupid hand you just cut opening the syringe, apologize to your kids for yelling and settle in on the couch for a beer with your husband.
You know, because tonight was supposed to be date night. But instead, you spent it at the after-hours clinic with your son who has pneumonia. Again. Actually, it never went away. The meds that we thought worked, well...didn't. Now said mom is sorta freaking out because the only option left is the one that's hard on the belly. And, sweet boy's belly isn't all that tolerant.
Damn. Damn. Damn. Damn.
Thank you God for amazing friends, for social media, for a loving husband and for a dose of perspective tonight. Because as I sat in my minivan crying in the Walgreen's parking lot (seriously, how LAME is that??) I thought of another mom tonight who sheds the same tears for a baby seriously ill in the NICU. Yeah. Been there, done that. We are definitely making progress. We just have to take a few steps back every now and then.
Sometimes you need to say words that only God will hear.
Sometimes you wonder why you pay the insurance company when you should really be paying your pediatrician's lighting bill.
Sometimes you just feel like one more bad break might just break you.
Then you wipe away the tears, dose the meds, put a bandaid on the stupid hand you just cut opening the syringe, apologize to your kids for yelling and settle in on the couch for a beer with your husband.
You know, because tonight was supposed to be date night. But instead, you spent it at the after-hours clinic with your son who has pneumonia. Again. Actually, it never went away. The meds that we thought worked, well...didn't. Now said mom is sorta freaking out because the only option left is the one that's hard on the belly. And, sweet boy's belly isn't all that tolerant.
Damn. Damn. Damn. Damn.
Thank you God for amazing friends, for social media, for a loving husband and for a dose of perspective tonight. Because as I sat in my minivan crying in the Walgreen's parking lot (seriously, how LAME is that??) I thought of another mom tonight who sheds the same tears for a baby seriously ill in the NICU. Yeah. Been there, done that. We are definitely making progress. We just have to take a few steps back every now and then.
Friday, August 5, 2011
QOTW: August 5, 2011
This is really more of story. A couple of days ago, I got the kids started on lunch while I washed dishes. The boys were being all "creative" with their pretzel sticks and spelling out words. Just before I pat myself on the back, I looked down to see John Paul's word...
PEE
"What, Mom?" he said, as he quickly ate the "p". It says "EE".
I couldn't even hide my laughter. That was pretty funny, buddy.
"So when you're big like me, your brain is bigger and you can put more stuff in it."
John Paul, reasoning why Luke just didn't understand as much as he did.
"I have book reporters block."
Will trying to explain to me why he still hadn't finished his summer book reports for school. Nice try, sir. Get to work.
"Caweee."
Luke, trying to say "call me". The kids saw it in a movie and Luke picked up the hand motion and the saying. So cute.
I am so hopeful that the sickness has truly left the building. July just stunk. it. up. ALG's repeat x-rays are still showing some pneumonia, so we'll repeat them again in another couple of weeks. All in all, though, everyone is feeling pretty good. We have a fun weekend ahead, a little Aggie Catholic get together, a little school pant hemming and some family time. My heart is happy/sad that summer is almost over. Just one more week! EEK.
Make it a great weekend. See y'all Monday.
PEE
"What, Mom?" he said, as he quickly ate the "p". It says "EE".
I couldn't even hide my laughter. That was pretty funny, buddy.
"So when you're big like me, your brain is bigger and you can put more stuff in it."
John Paul, reasoning why Luke just didn't understand as much as he did.
"I have book reporters block."
Will trying to explain to me why he still hadn't finished his summer book reports for school. Nice try, sir. Get to work.
"Caweee."
Luke, trying to say "call me". The kids saw it in a movie and Luke picked up the hand motion and the saying. So cute.
I am so hopeful that the sickness has truly left the building. July just stunk. it. up. ALG's repeat x-rays are still showing some pneumonia, so we'll repeat them again in another couple of weeks. All in all, though, everyone is feeling pretty good. We have a fun weekend ahead, a little Aggie Catholic get together, a little school pant hemming and some family time. My heart is happy/sad that summer is almost over. Just one more week! EEK.
Make it a great weekend. See y'all Monday.
Tuesday, August 2, 2011
Luke Update 8.2.11
Sometimes I forget that some people that read the blog aren't also my friends on FB. My apologies for not giving you the update. Just future FYI. If things are really, really bad (read: we are at Dell), trust me I will blog about it!
Pinky swear.
Saturday was a little scary. Scott and the boys were in Bowie at his 20-year high school reunion, while the girls, Luke and I were holding down the fort in Austin. Luke's fever was high and I was alternating ibuprofen with Tylenol all day. Scott made the decision to come home late Saturday (thank you honey) in case things went south. By Sunday afternoon, Luke's fever was no more and he was happily playing and terrorizing his brothers and sisters. Thank you, God.
It seems as if the 9 months of daily probiotics (I am a HUGE believer in those, btw) and the easier antibiotic we chose to give him was a good combo. His liquid intake isn't as much as I would like, but we finished meds tonight so I am hopeful we can jump back on the "gaining weight and loving it" bandwagon soon.
Bonus lesson in all this? I made chocolate chip cookies as a feel-good measure and he gobbled a few bites right up. That's my boy. A mighty big thanks for lifting him and all the other kids up in prayer. What a really crummy July. August will be better, I can feel it!
Your top ten is coming tomorrow.
Pinky swear.
Saturday was a little scary. Scott and the boys were in Bowie at his 20-year high school reunion, while the girls, Luke and I were holding down the fort in Austin. Luke's fever was high and I was alternating ibuprofen with Tylenol all day. Scott made the decision to come home late Saturday (thank you honey) in case things went south. By Sunday afternoon, Luke's fever was no more and he was happily playing and terrorizing his brothers and sisters. Thank you, God.
It seems as if the 9 months of daily probiotics (I am a HUGE believer in those, btw) and the easier antibiotic we chose to give him was a good combo. His liquid intake isn't as much as I would like, but we finished meds tonight so I am hopeful we can jump back on the "gaining weight and loving it" bandwagon soon.
Bonus lesson in all this? I made chocolate chip cookies as a feel-good measure and he gobbled a few bites right up. That's my boy. A mighty big thanks for lifting him and all the other kids up in prayer. What a really crummy July. August will be better, I can feel it!
Your top ten is coming tomorrow.
Friday, July 29, 2011
Here we go...again
Just as Scott and the boys pulled out of the driveway to head north for Scott's 20-year high school reunion, I felt Luke's forehead. Hot.
"Wave bye to Daddy," I whispered, praying that it was just low-grade and perhaps a result of teething. But my heart knew better. By 11am, his fever had jumped to 101. I called the pediatrican's office and asked them to fax over orders for a chest x-ray. They told me to make an appointment and, if necessary, the pediatrician could write the order after our visit.
Uh...no. I politely asked the nurse to ask Dr. E if she could go ahead and send over the order so we could have the x-rays in hand before the visit. An hour later I got a call that they had been faxed over.
Rule #1 in being your child's advocate. Never discount your gut. And rule #2, don't placate the mom. I knew what he had, I just needed a doctor to confirm it and write the scrip.
Later this afternoon, after getting the x-rays, we headed to the pedi's office and...
Luke now has pneumonia.
D***
Oh, and the even more fun part? Most of the drugs you give to treat it he's either A) allergic to or B) will have major gut issues because they are so harsh. Outstanding.
After several minutes of serious discussion with Dr. E, we opted to give him a less potent antibiotic to see if it will do the trick. If he's still having high fevers and not keeping fluids down by Sunday, I'm to take him directly to Dell.
{sigh}
Please, please, please take a few moments to pray for Master Luke. I am so hopeful that these meds will alleviate his symptoms and we can get him on the mend without any major side effects or a trip to my most unfavorite place in the world.
"Wave bye to Daddy," I whispered, praying that it was just low-grade and perhaps a result of teething. But my heart knew better. By 11am, his fever had jumped to 101. I called the pediatrican's office and asked them to fax over orders for a chest x-ray. They told me to make an appointment and, if necessary, the pediatrician could write the order after our visit.
Uh...no. I politely asked the nurse to ask Dr. E if she could go ahead and send over the order so we could have the x-rays in hand before the visit. An hour later I got a call that they had been faxed over.
Rule #1 in being your child's advocate. Never discount your gut. And rule #2, don't placate the mom. I knew what he had, I just needed a doctor to confirm it and write the scrip.
Later this afternoon, after getting the x-rays, we headed to the pedi's office and...
Luke now has pneumonia.
D***
Oh, and the even more fun part? Most of the drugs you give to treat it he's either A) allergic to or B) will have major gut issues because they are so harsh. Outstanding.
After several minutes of serious discussion with Dr. E, we opted to give him a less potent antibiotic to see if it will do the trick. If he's still having high fevers and not keeping fluids down by Sunday, I'm to take him directly to Dell.
{sigh}
Please, please, please take a few moments to pray for Master Luke. I am so hopeful that these meds will alleviate his symptoms and we can get him on the mend without any major side effects or a trip to my most unfavorite place in the world.
Thursday, July 28, 2011
Luke Update 7.28.11
A couple of weeks ago, before the sickness crazy hit our house, Luke had a big doctor visit with his nephrologist (kidney doc), an ultrasound and some bloodwork. In case you don't remember, Luke's kidneys are on the small side (like everything else with him!) and one is pelvic. In other words, instead of being where it should be, it sits right in the middle of his pelvis. Contact sports are a no-go for him.
The ultrasound showed that both kidneys are growing and his pelvic kidney (the right one) is actually in the 50th percentile for size. The left one is still puny, but growing. What all that means is that he's got pretty good kidney function and both are contributing, rather than one doing all the work. Dr. Simon gave us the one-year pass. If it was legal and socially acceptable I just might've kissed him.
For now, Luke will go back in a year, repeat bloodwork and the ultrasound. In the meantime, we will pray that both kidneys continue to grow. I'm hopeful that we can keep up the annual visits. Those are quite nice and a wonderful change from the every three and six months. The true test of kidney growth will come during puberty, but that's a ways off, right? I'm trying hard not to let all the uncertainties with these major organs get the better of me. Some days are better than others.
May I present Master Luke and the amazing Dr. Simon?
I really like Dr. Simon (the kidney man) for many reasons. 1) He is super funny and very chatty, 2) he is a Florida Gator, and 3) he always does a great pep talk and says things like, "Luke, dude, you look good!" or "Whoa man, look at you go."
Austin has some mighty fine pediatric specialists. I mean, I would know, I've practically met them all!!
The second and third parts of this update will come in about a month after we visit with Luke's geneticist. Technically, she brings our specialist count up to 8, but she's a short-timer. I hope. The other doctor on tap in a few weeks is the famous Dr. George, the neurosurgeon. 'Tis the season for annual specialist visits :)
The ultrasound showed that both kidneys are growing and his pelvic kidney (the right one) is actually in the 50th percentile for size. The left one is still puny, but growing. What all that means is that he's got pretty good kidney function and both are contributing, rather than one doing all the work. Dr. Simon gave us the one-year pass. If it was legal and socially acceptable I just might've kissed him.
For now, Luke will go back in a year, repeat bloodwork and the ultrasound. In the meantime, we will pray that both kidneys continue to grow. I'm hopeful that we can keep up the annual visits. Those are quite nice and a wonderful change from the every three and six months. The true test of kidney growth will come during puberty, but that's a ways off, right? I'm trying hard not to let all the uncertainties with these major organs get the better of me. Some days are better than others.
May I present Master Luke and the amazing Dr. Simon?
Dr. Simon just happens to married to the "other" Dr. Simon, as in the neonatologist who discharged Luke from the NICU. Love. Them. Both. And, oh my, is Luke a peanut here or what??
I really like Dr. Simon (the kidney man) for many reasons. 1) He is super funny and very chatty, 2) he is a Florida Gator, and 3) he always does a great pep talk and says things like, "Luke, dude, you look good!" or "Whoa man, look at you go."
Austin has some mighty fine pediatric specialists. I mean, I would know, I've practically met them all!!
The second and third parts of this update will come in about a month after we visit with Luke's geneticist. Technically, she brings our specialist count up to 8, but she's a short-timer. I hope. The other doctor on tap in a few weeks is the famous Dr. George, the neurosurgeon. 'Tis the season for annual specialist visits :)
Thursday, July 21, 2011
Sit Rep: Sickopalypse 2011
For my military-loving friends, here's our Sit Rep (Situation Report):
Clare, did in fact, have the chicken pox. She scratched the area so badly it became a staph infection. ACTION: Taking bleach baths every night x3, bleaching the tub afterward, along with her bed, toys and towels and on antibiotics for seven days.
Will and John Paul had a nasty strain of bacterial pneumonia. ACTION: On antibiotics for 10 days and we're watching them like hawks to make sure they COVER THEIR MOUTHS when they cough.
Anna-Laura got the worst of it. Her bacterial pneumonia turned into all-out pneumonia. ACTION: Her first round of antibiotics was still resulting in horrific fevers (103 and above), so in addition to her 10-day treatment, she also had a shot of antibiotics last night. If that doesn't work, it's off to the hospital we go. We head back to the doctor in the AM to get the verdict.
By no small miracle, Luke is still well and doing beautifully in therapy.
Scott and I are sortof on the verge of losing our sanity. But other than that minor detail, Dr Pepper and the gym are keeping us off the ledge. I really should've just posted a one word description of life here the last couple of weeks: Seriously???!!
Clare, did in fact, have the chicken pox. She scratched the area so badly it became a staph infection. ACTION: Taking bleach baths every night x3, bleaching the tub afterward, along with her bed, toys and towels and on antibiotics for seven days.
Will and John Paul had a nasty strain of bacterial pneumonia. ACTION: On antibiotics for 10 days and we're watching them like hawks to make sure they COVER THEIR MOUTHS when they cough.
Anna-Laura got the worst of it. Her bacterial pneumonia turned into all-out pneumonia. ACTION: Her first round of antibiotics was still resulting in horrific fevers (103 and above), so in addition to her 10-day treatment, she also had a shot of antibiotics last night. If that doesn't work, it's off to the hospital we go. We head back to the doctor in the AM to get the verdict.
By no small miracle, Luke is still well and doing beautifully in therapy.
Scott and I are sortof on the verge of losing our sanity. But other than that minor detail, Dr Pepper and the gym are keeping us off the ledge. I really should've just posted a one word description of life here the last couple of weeks: Seriously???!!
Thursday, July 7, 2011
Leg Bling
Like forever and a day ago, on Good Friday, Luke got his foot braces. Or, to be all medical, his SMOs. A week beforehand, I trooped up to the doctor with all five kids. Yep, all five.
There are two exam rooms - one really huge one and one itty, bitty tiny one. Guess which one we got? Uh huh, the small one. The kids actually did pretty well. I put two on reading duty, one on iPhone camera duty and one on "keep Luke happy" duty.
Our amazing orthotist, Bud, who fitted Luke for his helmet last July was on the case again for Luke's foot braces. Or is it feet braces? I don't know. It didn't take long at all and a few days later the actual braces came in and we trooped back up for his fitting. These are much different than his helmet in that we don't have to go in every two weeks for an adjustment. It's likely he will wear them two years. Yes, I said years. But, we won't go back in for about a year to get new ones.
We put them on over his socks and they cover his entire foot, ankle and about two inches above the ankle. His shoes then fit over the top of those. Now, his shoes are three sizes bigger and two times as wide as before. We call them his clown feet! I was really worried that we would have to go back to physical therapy when he got the braces as I was convinced that it would really throw things off. Guess I was wrong.
When we went to get his new shoes, the gal helping us encouraged Luke to take a few steps. I looked at her and apologetically explained, "Oh he just got these new braces so he won't be able to do that."
Then, he walked across the room as if to say, "Mom, please don't tell me what I can't do."
The braces haven't slowed him down one single bit. In fact, I think he runs a little faster and a lot steadier. He wears them during his waking hours and we take them off for naps and bedtime.
I'm so hopeful that this proactive approach will help him in the long-term and it will be yet another thing he'll have to read the blog to remember!
There are two exam rooms - one really huge one and one itty, bitty tiny one. Guess which one we got? Uh huh, the small one. The kids actually did pretty well. I put two on reading duty, one on iPhone camera duty and one on "keep Luke happy" duty.
Our amazing orthotist, Bud, who fitted Luke for his helmet last July was on the case again for Luke's foot braces. Or is it feet braces? I don't know. It didn't take long at all and a few days later the actual braces came in and we trooped back up for his fitting. These are much different than his helmet in that we don't have to go in every two weeks for an adjustment. It's likely he will wear them two years. Yes, I said years. But, we won't go back in for about a year to get new ones.
We put them on over his socks and they cover his entire foot, ankle and about two inches above the ankle. His shoes then fit over the top of those. Now, his shoes are three sizes bigger and two times as wide as before. We call them his clown feet! I was really worried that we would have to go back to physical therapy when he got the braces as I was convinced that it would really throw things off. Guess I was wrong.
When we went to get his new shoes, the gal helping us encouraged Luke to take a few steps. I looked at her and apologetically explained, "Oh he just got these new braces so he won't be able to do that."
Then, he walked across the room as if to say, "Mom, please don't tell me what I can't do."
The braces haven't slowed him down one single bit. In fact, I think he runs a little faster and a lot steadier. He wears them during his waking hours and we take them off for naps and bedtime.
I'm so hopeful that this proactive approach will help him in the long-term and it will be yet another thing he'll have to read the blog to remember!
Thursday, June 30, 2011
Luke Update 6.30.11
Thanks for being patient, y'all.
A few weeks ago when I wrote this post, I was in a bad way. Things were horrible with a capital "H." I'll see if I can summarize the past five months in a few sentences.
In December, Luke got the stomach virus and started throwing up. He never really recovered and then got a double whammy of the flu and the stomach virus again in February. All the while, most of his calories and nutrients were coming from a liquid supplement, Kid Essentials, which he drank through his sippy cup. We were also adding a powder supplement, Duocal, to that concoction. About four weeks ago, we went from bad to worse. He was throwing up, on average, 1-2 times a day and gagging about 20 times a day. Sometimes just seeing food or feeling a certain texture would cause it. Even therapy, which we've been doing since February, wasn't helping. But four weeks ago, he started throwing up 3-4 times a day and he wasn't even taking in a third of his calories.
Insert MAJOR freak out here. I started calling intensive in-patient hospitals that specialized in feeding therapy. The only one we knew of was in Dallas. There was a 10-month waiting list, but we were told Luke might be a candidate for a quicker admission. We called a chiropractor, a child psychologist, our priest and the Dalai Lama. Ok, maybe not that last one, but I really wasn't counting anybody out here. I cried some serious tears and laid LOADS of mom guilt on top of my already full plate. I think I looked up Dr. Google, too.
Bad, bad idea.
After a visit to Luke's pediatrician and a phone visit with his gastroenterologist, it was decided that Luke needed to undergo an endoscopy (scope down the throat while under general anesthesia) and a biopsy so we could find out the source of his extreme vomiting.
As providence would have it, his gastro went on a planned vacation the next day and so we scheduled the procedure for this week. The day after calling her, I was preparing Luke's supplement when I realized that none of his sippy cups were clean. I shrugged my shoulders, inserted a regular straw into the supplement and let him drink it without the Duocal. By lunch, he hadn't thrown up yet. I decided to forgo the Duocal the remainder of the day just to see what he would do.
No throwup, no gagging. At this point, my mom instinct that I had been pushing aside for weeks surfaced. The next day, not only did he down 24-ounces (a record!) of Kid Essentials, but he actually put food. In. His. Mouth. and happily played in his highchair.
I did a brief raindance, threw out every trace of Duocal in our house and lit fire to the container.
At therapy, Luke took a bite of every food his therapist put in front of him. We both cried. I waited to see this behavior for two weeks and the morning before his procedure I called his gastro and promptly cancelled the endoscopy and biopsy. I wasn't really looking for permission because I knew it was the right thing to do.
Answered prayer, without a doubt.
Don't get me wrong. We have loads more progress to make. Luke is still only eating hard, crunchy textures and he's still gagging occasionally. His muscle tone inside his mouth, particularly his tongue, is extremely low. We have our work cut out for us.
BUT. We have taken the g-tube surgery off the table. Again. Our gastro just laughed when we saw her on Tuesday. "Threaten him with a procedure or surgery and he whips right into shape, doesn't he?" For the record, I really love Dr. Berhane. She is the bomb.
Thanks for the prayers and the patience as we navigate this very uncertain, very slow road to getting Luke to eat (and to talk!) in an area that is age appropriate. I am grateful to so many of you who reached out. Thank you. There's a song on the radio that reminds us that perhaps the trials of this life might be His mercy in disguise.
I believe that, wholeheartedly.
A few weeks ago when I wrote this post, I was in a bad way. Things were horrible with a capital "H." I'll see if I can summarize the past five months in a few sentences.
In December, Luke got the stomach virus and started throwing up. He never really recovered and then got a double whammy of the flu and the stomach virus again in February. All the while, most of his calories and nutrients were coming from a liquid supplement, Kid Essentials, which he drank through his sippy cup. We were also adding a powder supplement, Duocal, to that concoction. About four weeks ago, we went from bad to worse. He was throwing up, on average, 1-2 times a day and gagging about 20 times a day. Sometimes just seeing food or feeling a certain texture would cause it. Even therapy, which we've been doing since February, wasn't helping. But four weeks ago, he started throwing up 3-4 times a day and he wasn't even taking in a third of his calories.
Insert MAJOR freak out here. I started calling intensive in-patient hospitals that specialized in feeding therapy. The only one we knew of was in Dallas. There was a 10-month waiting list, but we were told Luke might be a candidate for a quicker admission. We called a chiropractor, a child psychologist, our priest and the Dalai Lama. Ok, maybe not that last one, but I really wasn't counting anybody out here. I cried some serious tears and laid LOADS of mom guilt on top of my already full plate. I think I looked up Dr. Google, too.
Bad, bad idea.
After a visit to Luke's pediatrician and a phone visit with his gastroenterologist, it was decided that Luke needed to undergo an endoscopy (scope down the throat while under general anesthesia) and a biopsy so we could find out the source of his extreme vomiting.
As providence would have it, his gastro went on a planned vacation the next day and so we scheduled the procedure for this week. The day after calling her, I was preparing Luke's supplement when I realized that none of his sippy cups were clean. I shrugged my shoulders, inserted a regular straw into the supplement and let him drink it without the Duocal. By lunch, he hadn't thrown up yet. I decided to forgo the Duocal the remainder of the day just to see what he would do.
No throwup, no gagging. At this point, my mom instinct that I had been pushing aside for weeks surfaced. The next day, not only did he down 24-ounces (a record!) of Kid Essentials, but he actually put food. In. His. Mouth. and happily played in his highchair.
I did a brief raindance, threw out every trace of Duocal in our house and lit fire to the container.
At therapy, Luke took a bite of every food his therapist put in front of him. We both cried. I waited to see this behavior for two weeks and the morning before his procedure I called his gastro and promptly cancelled the endoscopy and biopsy. I wasn't really looking for permission because I knew it was the right thing to do.
Answered prayer, without a doubt.
Don't get me wrong. We have loads more progress to make. Luke is still only eating hard, crunchy textures and he's still gagging occasionally. His muscle tone inside his mouth, particularly his tongue, is extremely low. We have our work cut out for us.
BUT. We have taken the g-tube surgery off the table. Again. Our gastro just laughed when we saw her on Tuesday. "Threaten him with a procedure or surgery and he whips right into shape, doesn't he?" For the record, I really love Dr. Berhane. She is the bomb.
Thanks for the prayers and the patience as we navigate this very uncertain, very slow road to getting Luke to eat (and to talk!) in an area that is age appropriate. I am grateful to so many of you who reached out. Thank you. There's a song on the radio that reminds us that perhaps the trials of this life might be His mercy in disguise.
I believe that, wholeheartedly.
Friday, June 10, 2011
Luke Update 6.10.11
Skipping the QOTW this week. It's not really "kid friendly" :(
Before I give you the d lo on Luke, I don't think this awesome doctor has ever graced the blog. Luke's ENT (ear-nose-throat) doctor, Dr. Connolly, is a total crack up and a heck of a good physician. The thing I love, love about this picture is that this is the way Dr. C always looks. If I ever run into him outside of clinic, I will never recognize him without that thingamajig on his head!
He has been extraodinarily patient with Luke and my one-million questions. Dr. C inserted Luke's ear tubes last July and they have been a complete and total Godsend. We can't really afford for Luke to be sick, he's allergic to most of the antibiotics that heal an ear infection and his medical history is ridiculously complicated. Enter Dr. C. He came highly recommended and for good reason. We are hopeful that Luke's ear tube stint will soon become unnecessary and we can let Dr. C loose sometime next year.
Now. Onto the gut, the lack of eating and the gagging. It all pretty much stinks. Pun intended. I had a tearful, yet awesome, visit with Luke's pediatrician on Tuesday morning and a great visit with Luke's occupational therapist on Wednesday. I'm still waiting to visit with the gastroenterologist. In the meantime, we have been doing some serious research and making some phone calls about where to go from here. Really, we have three options: surgery, more testing and radical therapy...or a combination of the three. The next few weeks will be very telling (and taxing and trying and hopefully hope-building). I just ask three things:
1. Keep praying. Like really praying. For clarity, for wisdom and for patience.
2. If I look stressed or tired or just answer your Luke question with, "He's ok", please don't take it personally. We just have a boatload of stuff on the mind.
3. Send me funny jokes. This week my Hand to Hold mentor sent me a blogpost about bathing suits and Texas weather. I'm pretty sure I wet my pants.
For our weekend? We're just giving it all to God and ENJOYING life because my birthday is tomorrow. YIPPPPPEEEEE!!!! I love my birthday just as much as I love my kids'. What's not to love, man? It's the day you were born. We're gonna do it up right. That I promise. More on that fun time coming to the blog next week. So, it goes without saying we will definitely have a good weekend. I hope you do the same!
Before I give you the d lo on Luke, I don't think this awesome doctor has ever graced the blog. Luke's ENT (ear-nose-throat) doctor, Dr. Connolly, is a total crack up and a heck of a good physician. The thing I love, love about this picture is that this is the way Dr. C always looks. If I ever run into him outside of clinic, I will never recognize him without that thingamajig on his head!
He has been extraodinarily patient with Luke and my one-million questions. Dr. C inserted Luke's ear tubes last July and they have been a complete and total Godsend. We can't really afford for Luke to be sick, he's allergic to most of the antibiotics that heal an ear infection and his medical history is ridiculously complicated. Enter Dr. C. He came highly recommended and for good reason. We are hopeful that Luke's ear tube stint will soon become unnecessary and we can let Dr. C loose sometime next year.
Now. Onto the gut, the lack of eating and the gagging. It all pretty much stinks. Pun intended. I had a tearful, yet awesome, visit with Luke's pediatrician on Tuesday morning and a great visit with Luke's occupational therapist on Wednesday. I'm still waiting to visit with the gastroenterologist. In the meantime, we have been doing some serious research and making some phone calls about where to go from here. Really, we have three options: surgery, more testing and radical therapy...or a combination of the three. The next few weeks will be very telling (and taxing and trying and hopefully hope-building). I just ask three things:
1. Keep praying. Like really praying. For clarity, for wisdom and for patience.
2. If I look stressed or tired or just answer your Luke question with, "He's ok", please don't take it personally. We just have a boatload of stuff on the mind.
3. Send me funny jokes. This week my Hand to Hold mentor sent me a blogpost about bathing suits and Texas weather. I'm pretty sure I wet my pants.
For our weekend? We're just giving it all to God and ENJOYING life because my birthday is tomorrow. YIPPPPPEEEEE!!!! I love my birthday just as much as I love my kids'. What's not to love, man? It's the day you were born. We're gonna do it up right. That I promise. More on that fun time coming to the blog next week. So, it goes without saying we will definitely have a good weekend. I hope you do the same!
Monday, June 6, 2011
Praying for a miracle
That's how I feel most days with Luke. This time last year, he was up for hours on end screaming, with no end in sight. It wasn't until Christmas, nearly 8 months of screaming at night for 2-3 hours at at time, that he finally slept through the night.
That was hell.
The tears I have shed on this boy would fill Lake Austin. All 21 feet of it that we're down because of this drought.
Funny, because that's how I feel. Completely and totally drained. People ask all the time, "So, how's Luke?" Up until February I didn't mind answering. But when he gave up all food and started throwing up daily I've begun to hate that question. It's not that I mind people asking and genuinely wanting to know. It's the internal struggle of, "how much should I really tell them?" Because inevitably there are tears with that answer.
It's nearly 2am and he's thrown up three times today. I just put another load of laundry in the wash. I just cleaned up another bed covered in throw up. Changed another diaper that to most moms would be an immediate call to the doctor because it was such horrible diarrhea. Wept another foot of tears begging God to just freakin' let up. I. am. so. frustrated. And I'm really in pain seeing him struggle so much.
I've begun to hate seeing kids chowing on a Happy Meal at McDonald's. Luke can't even keep a Cheerio down. It is hard to hear other toddlers babbling and saying words when his vocabulary is so limited. Hearing people say, "Oh, he's so tiny" sometimes makes me want to sigh heavily and do some bodily damage. And I feel like a complete baby for even whining about all that.
The past few months, even with therapy, I'm slowly seeing a regression. One that I have been in denial is happening. But it is happening. I am trying very hard not to freak out. Freak outs don't usually end well. They usually end with me on Google and babbling to the blog. Not good.
There are only two things I know to do. Pray and call his pediatrician. No amount of tears is going to fix this one. I remember one evening in the NICU on a particularly cruddy day asking God if I held Luke a little longer, hugged him a little tighter, kissed on him a little more...could I love his problems away? Tonight, as I rocked him in the nursery to calm him down, I asked those same questions.
This journey with Luke is so hard. I love him and other children so much that sometimes, it physically hurts. I pray that God gives us the right answers, the right doctors, the right bits of solace when we most need it so that we can endure this journey. Tonight, we just all need some sleep...
That was hell.
The tears I have shed on this boy would fill Lake Austin. All 21 feet of it that we're down because of this drought.
Funny, because that's how I feel. Completely and totally drained. People ask all the time, "So, how's Luke?" Up until February I didn't mind answering. But when he gave up all food and started throwing up daily I've begun to hate that question. It's not that I mind people asking and genuinely wanting to know. It's the internal struggle of, "how much should I really tell them?" Because inevitably there are tears with that answer.
It's nearly 2am and he's thrown up three times today. I just put another load of laundry in the wash. I just cleaned up another bed covered in throw up. Changed another diaper that to most moms would be an immediate call to the doctor because it was such horrible diarrhea. Wept another foot of tears begging God to just freakin' let up. I. am. so. frustrated. And I'm really in pain seeing him struggle so much.
I've begun to hate seeing kids chowing on a Happy Meal at McDonald's. Luke can't even keep a Cheerio down. It is hard to hear other toddlers babbling and saying words when his vocabulary is so limited. Hearing people say, "Oh, he's so tiny" sometimes makes me want to sigh heavily and do some bodily damage. And I feel like a complete baby for even whining about all that.
The past few months, even with therapy, I'm slowly seeing a regression. One that I have been in denial is happening. But it is happening. I am trying very hard not to freak out. Freak outs don't usually end well. They usually end with me on Google and babbling to the blog. Not good.
There are only two things I know to do. Pray and call his pediatrician. No amount of tears is going to fix this one. I remember one evening in the NICU on a particularly cruddy day asking God if I held Luke a little longer, hugged him a little tighter, kissed on him a little more...could I love his problems away? Tonight, as I rocked him in the nursery to calm him down, I asked those same questions.
This journey with Luke is so hard. I love him and other children so much that sometimes, it physically hurts. I pray that God gives us the right answers, the right doctors, the right bits of solace when we most need it so that we can endure this journey. Tonight, we just all need some sleep...
Friday, June 3, 2011
QOTW: School's out for summer!!!!!!!!!!!!!!!
I think that right there is our quote of the week. That and this gem from John Paul...
"Dad, when do you get out of work for the summer?"
The 2010-2011 school year is officially over. I thought we were on a pretty good pace until January hit. Since then, we never hit the brakes. I'm now the mom of a 5th, 2nd, 1st and PK-er with a tiny toddler still in tow. Say it isn't so.
We were fortunate, as in "we totally hit the jackpot", with teachers this year.
Will and Mrs. H. (love. her.)
Favorite things about Mrs. H: She says thinks like "I'm all over that like a chicken on a cheeto", she is spunky and funny and sets the bar HIGH for her students, she has a classroom decorated in leopard print, she always makes you feel like the most important parent in the room. Yeah, we're going to miss her.
John Paul and Mrs. T
Favorite things about Mrs. T: She doesn't settle for monkey business, she really instills a love of reading and writing in her students, she expects her little people to show kindness, respect and love and she is quick to call you if there's a problem brewing. Yes, we've had a couple of P-T conferences with her :) She survived a John Paul year!
Anna-Laura and Mrs. M and Mrs. R.
Favorite things about them: They teach kindergarten, people! What's not to love?? They were especially helpful as we got Anna-Laura reading. I appreciated the extra effort and their loving approach. It was fantastic.
Clare and Mrs. G and Mrs. L.
Favorite things about them: Their love of 3yo's completely shined through each morning at drop off and again at pick up. It takes a special person to have that kind of patience. I so admired their creativity, their positivity and their faithfulness.
To take a new spin on teacher gifts this year, we gave them an "angelonia" flower they could plant in their gardens. Is it obvious my new love affair with bell jars? It's a beautiful flower and I thought the name was perfect.
We are looking forward to a slower pace, some great summer camps and time together as a family. Bring on summertime!
"Dad, when do you get out of work for the summer?"
The 2010-2011 school year is officially over. I thought we were on a pretty good pace until January hit. Since then, we never hit the brakes. I'm now the mom of a 5th, 2nd, 1st and PK-er with a tiny toddler still in tow. Say it isn't so.
We were fortunate, as in "we totally hit the jackpot", with teachers this year.
Will and Mrs. H. (love. her.)
Favorite things about Mrs. H: She says thinks like "I'm all over that like a chicken on a cheeto", she is spunky and funny and sets the bar HIGH for her students, she has a classroom decorated in leopard print, she always makes you feel like the most important parent in the room. Yeah, we're going to miss her.
John Paul and Mrs. T
Favorite things about Mrs. T: She doesn't settle for monkey business, she really instills a love of reading and writing in her students, she expects her little people to show kindness, respect and love and she is quick to call you if there's a problem brewing. Yes, we've had a couple of P-T conferences with her :) She survived a John Paul year!
Anna-Laura and Mrs. M and Mrs. R.
Favorite things about them: They teach kindergarten, people! What's not to love?? They were especially helpful as we got Anna-Laura reading. I appreciated the extra effort and their loving approach. It was fantastic.
Clare and Mrs. G and Mrs. L.
Favorite things about them: Their love of 3yo's completely shined through each morning at drop off and again at pick up. It takes a special person to have that kind of patience. I so admired their creativity, their positivity and their faithfulness.
To take a new spin on teacher gifts this year, we gave them an "angelonia" flower they could plant in their gardens. Is it obvious my new love affair with bell jars? It's a beautiful flower and I thought the name was perfect.
We are looking forward to a slower pace, some great summer camps and time together as a family. Bring on summertime!
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