Dr KT called late Friday afternoon. He doesn't want to admit on Monday as he is finishing up a nursery rotation and he wants to be in charge of a direct admit, not a voluntary admit. So he is having us come into the office on Tuesday right before lunch and he will do a direct admit from there. He is admitting Eli to the chronic care team at CMH. This team handles the long term resident patients. He feels that they will be best suited to help Eli with what is going on.
Right now we are just working to keep up with his hydration. He's had alot of diapers today and his nurse has really had to work to keep up with replacing the fluids, without losing calories. He's still been running his low grade fever. We are hoping the docs can get it all figured out.
In other news...Emily has finished her first week of Shakespeare and has enjoyed it. They are working to make costumes and she's learning her parts. All of the children have been in rare form lately. They aren't looking forward to this upcoming admit for Eli and are struggling to deal.
Bob and I went out last night. An incredibly dear friend of ours kept all 5 of our kiddos. Their little girl is just like Eli so she's super familiar! Bob and I went out with friends to dinner and dancing. We had a fabulous time. We didn't get to bed until 2am and got to sleep in until 8:30....which for us is incredibly late. We went out for breakfast together and then collected our children! :) It was our first time in almost 20 months to not have any children for an entire night. We are so blessed!
Saturday, July 16, 2011
Wednesday, July 13, 2011
Results In
The same doctor that thought we were all nuts and that Eli couldn't possibly have Cdiff...the same doctor that called me yesterday morning saying that since 1 result showed positive and 1 result showed negative and she was just certain that it wasn't positive, called me and said it's negative and he doesn't have CDiff. So this morning this same doc calls and says oooops. The 24 hr culture came back and sure enough he does have Cdiff. Humph. So Eli does in fact have Cdiff and we have wasted days that we could have already started the medicine.
Meds ordered and being delivered. We will update as we know more.
Meds ordered and being delivered. We will update as we know more.
Tuesday, July 12, 2011
Admission Scheduled
Today we met with Eli's GI doc. There was alot of conversation and we were there for over 3 hrs. He is concerned about Eli's bowel issues. Eli's test don't appear to show CDiff. Which is good. The bad news is he apparently is still passing pieces of his intestinal walls because his GI system is so stressed out. He's also having alot of diarrhea still and his bottom is so swollen and red. He has a yeast infection on his bottom from all of it. His urine is showing problems with clearing out his system. With the amount of fluids he's getting he should be passing more waste and he isn't. Which means his body is holding waste. His kidney functions look ok though. He's still struggling with hydration and the more fluids we push the more his GI system freaks out. He's still sweating and his body temp is struggling even more to keep control. When we got to the doc he was as red as a lobster from head to toe, with heat rash all over, and over 100 degree temp. His docs talked while we were there and have decided that all signs and symptoms point to an adrenal crisis. They don't believe that his adrenal system is properly regulating hormones and levels and such, which is making it impossible for his body to figure out what to hold, what to dump, and when to do it all.
They have decided to begin a long term admission on Monday. They don't want to start one mid week as it's hard to get everyone organized. So the rest of this week they organize and make plans and we admit monday. Tons of phone calls, tons of paperwork. His goals for discharge are HUGE.
He has to be able to gain steady real weight. They've given him his FTT back. (failure to thrive) as he isn't gaining anything but bloat weight that he loses the next day. He has to be able to maintain his hydration without upsetting his GI system. We have to have the excessive sweating and adrenal issues under control.
To some these may sound like easy goals but for a kiddo like Eli who is already so fragile, these goals are massive.
Eli's not thrilled and isn't feeling well at all. His body is bucking everything right now and not handling much.
We will update as we know more.
They have decided to begin a long term admission on Monday. They don't want to start one mid week as it's hard to get everyone organized. So the rest of this week they organize and make plans and we admit monday. Tons of phone calls, tons of paperwork. His goals for discharge are HUGE.
He has to be able to gain steady real weight. They've given him his FTT back. (failure to thrive) as he isn't gaining anything but bloat weight that he loses the next day. He has to be able to maintain his hydration without upsetting his GI system. We have to have the excessive sweating and adrenal issues under control.
To some these may sound like easy goals but for a kiddo like Eli who is already so fragile, these goals are massive.
Eli's not thrilled and isn't feeling well at all. His body is bucking everything right now and not handling much.
We will update as we know more.
Monday, July 11, 2011
Another threat of admission
Hemoc~ We've gotten Eli's 1st repeat round of testing back. The test that shows if he has a 15% chance of a blood clot in the next year came back negative this time. His hematologist thinks that it was so high because of the trauma getting the blood. We were all excited that we didn't need blood thinners and his doc said don't get excited...we just don't need them yet. So we keep waiting for the rest of the tests but his doc isn't optimistic.
Eli met with his complex kids clinic today. He met with a nurse practioner. It was a mess. First she wanted to admit him. She is concerned about his bowels and hydration. We voiced our concern about admitting him simply to force his docs to talk and make a choice. We were just inpatient last week and they were going to get all the docs on the same page and that it didn't happen. We explained that we can't admit each week to try and make his docs communicate and get a good care plan. So she ultimately agreed. She has added 2 new meds and again wanting to change around some of his feeds/fluids. She scheduled a 2 plus hour with his main medical complex doctor next week, and is also working to arrainge a care team meeting where all of his main docs meet in 1 room at the exact same time. Also some discussions need to happen on the fact that there were 2 pages of orders from Dr Shoffner and nobody is following them or letting me know what they are. hmmm. So we will see how that goes.
In the mean time they are running lab work as she's wondering if he has CDiff. If that's the case he's a guaranteed admit. We are hoping to still get those results tonight. He's running a low grade again today and we are struggling to keep him cool and hydrated with this massive heat. Our AC just isn't keeping up.
We will update as we know more.
Eli met with his complex kids clinic today. He met with a nurse practioner. It was a mess. First she wanted to admit him. She is concerned about his bowels and hydration. We voiced our concern about admitting him simply to force his docs to talk and make a choice. We were just inpatient last week and they were going to get all the docs on the same page and that it didn't happen. We explained that we can't admit each week to try and make his docs communicate and get a good care plan. So she ultimately agreed. She has added 2 new meds and again wanting to change around some of his feeds/fluids. She scheduled a 2 plus hour with his main medical complex doctor next week, and is also working to arrainge a care team meeting where all of his main docs meet in 1 room at the exact same time. Also some discussions need to happen on the fact that there were 2 pages of orders from Dr Shoffner and nobody is following them or letting me know what they are. hmmm. So we will see how that goes.
In the mean time they are running lab work as she's wondering if he has CDiff. If that's the case he's a guaranteed admit. We are hoping to still get those results tonight. He's running a low grade again today and we are struggling to keep him cool and hydrated with this massive heat. Our AC just isn't keeping up.
We will update as we know more.
Thursday, July 7, 2011
Hemoc Called
Eli's hemoc called. The test that was to check his possibility of having another blood clot in 1 year came back. We were told if his was higher than 15% then he was back on blood thinners. Well his is so high that they are rushing him in for am emergency ECHO and ultrasound. They are concerned that his blood clot in his heart, that was supposedly turned into a calcified leason that was growing is possibly a blood clot, potentially more. The risk for him throwing clots right now, if not already is super high. His hematologist is concerned and has called the cardiologist. We are scared, and his hemoc PA said rightfully so. We go in at 1:30 for echos and ultrasounds and tons more lab work. We will update more as we know more. please keep our little man in your thoughts and prayers and please keep our family as well...we are exhausted and feel like we are nearing the end of what we can emotionally, mentally and physically handle.
Wednesday, July 6, 2011
Gi for Jace and Hemoc for Eli
Today was a long day.
This morning Jace had his 1st establish visit with his new GI doc. We decided to have him see the same GI doc that Eli sees for ease of purpose and he's a damn good doctor! We discussed Jace's GERD and CVS, and he believes that Jace most definitely has IBS as well. Which really isn't a shocker at all. He wants to continue with the same meds as they seem to be working pretty well. He wants deeper monitor on the GERD episodes and this will help him determine when he wants the next scopes and biopsies. Will recheck in 1 month.
This afternoon my little man had his appt with Hemoc. They had set this up for approximately 1 month after ending blood thinners. It was supposed to be an open and shut case appt with basic lab work. Not so. They discussed multiple things, including the confirmed Mito. In light of how fragile Eli's body system is he is completely changing his plans. When we get our next line he wants 1/2 strength blood thinners. He's also running a special test to check the probability of having another blood clot in the next year. If this comes back above 15% we are back on blood thinners. Lastly if Eli has 1 single blood clot then he's on blood thinners guaranteed for life. He will continue to follow Eli closely and wants us to make sure that ALL docs talk with him when there is any discussion on a new line. We weren't expecting this at all. He ran a TON of lab work. They needed more blood than Eli's body will allow, so we hit his body max at 20ml. It took over an hr, 2 sticks, and 4 nurses to get all of it. He's beyond exhausted and pretty dehydrated from the sweating, shaking, crying and blood loss. Hoping for a quiet evening at home to let him rest a bit.
More coming this week, but for now that's all. i'm exhausted.
This morning Jace had his 1st establish visit with his new GI doc. We decided to have him see the same GI doc that Eli sees for ease of purpose and he's a damn good doctor! We discussed Jace's GERD and CVS, and he believes that Jace most definitely has IBS as well. Which really isn't a shocker at all. He wants to continue with the same meds as they seem to be working pretty well. He wants deeper monitor on the GERD episodes and this will help him determine when he wants the next scopes and biopsies. Will recheck in 1 month.
This afternoon my little man had his appt with Hemoc. They had set this up for approximately 1 month after ending blood thinners. It was supposed to be an open and shut case appt with basic lab work. Not so. They discussed multiple things, including the confirmed Mito. In light of how fragile Eli's body system is he is completely changing his plans. When we get our next line he wants 1/2 strength blood thinners. He's also running a special test to check the probability of having another blood clot in the next year. If this comes back above 15% we are back on blood thinners. Lastly if Eli has 1 single blood clot then he's on blood thinners guaranteed for life. He will continue to follow Eli closely and wants us to make sure that ALL docs talk with him when there is any discussion on a new line. We weren't expecting this at all. He ran a TON of lab work. They needed more blood than Eli's body will allow, so we hit his body max at 20ml. It took over an hr, 2 sticks, and 4 nurses to get all of it. He's beyond exhausted and pretty dehydrated from the sweating, shaking, crying and blood loss. Hoping for a quiet evening at home to let him rest a bit.
More coming this week, but for now that's all. i'm exhausted.
Tuesday, July 5, 2011
Home from the hospital
We are home. Eli got discharged this afternoon. We really loved his inpatient doc this time and were very lucky to have gotten onto the silver team with him! Eli's blood sugars are low enough to earn him the title of hypoglycemic, but not danger level. His mito doc, Dr Shoffner, does however say that they are going to make him feel way crappier than a normal kiddo. Eli now owns his own glucometer and all the supplies that go with it. He will test 6 times a day, and any others PRN. There is a base plan in place for when his sugars drop, and a more detailed plan will be made over the next few days. Dr Shoffner also wants his fluids increased by a lot. He wants 120ml/ per kilo, and currently Eli is getting 96.8ml/per kilo. So we are way short. The likelihood that Eli's body can handle that kind of increase is pretty slim. There are going to be meetings and talks tomorrow to try and figure out what next. They are also pushing endocrine to get him in quickly.
Tomorrow Eli has his hematologist and we are looking forward to what they have to say about his clotting and anemia.
As of this morning Eli is running a super low grade, and is really sleepy. We are hoping he didn't pick up anything inpatient. Only time will tell.
We will update more as we know more over these next few days.
Tomorrow Eli has his hematologist and we are looking forward to what they have to say about his clotting and anemia.
As of this morning Eli is running a super low grade, and is really sleepy. We are hoping he didn't pick up anything inpatient. Only time will tell.
We will update more as we know more over these next few days.
Monday, July 4, 2011
Quick Admit Update
Docs rounded, and so did nutrition. They did blood sugars every 1 hr this morning and around 2pm switched over to every 2 hrs. Now that he's off his feed for his evening break they are doing every hour again. His sugars are dropping now.
Doc is simply monitoring all day. Tomorrow we will have long chats with his pediatrician, nutrition and endocrine to figure out what is going on and what we need to do next. He's still got a rash on his face and arms and a touch on his legs. He's still red and a bit sweaty, not as clammy. He's incredibly sleepy and has been asleep or sleepy fussing most all day.
We just got back from the playroom where he spent almost an hr playing. Now he's laying back on his dad in the rocking chair watching a baby einstein video. Hoping he is able to get some decent sleep tonight. As of right now bob and i are at 38 hrs awake with MAYBE 3 hrs of cat naps. So we are dragging.
A dear friend of ours is sending us dinner tonight and a few extra meals to help cover food for the next day or two! We are so thankful to have amazing friends in our lives!
We will update tomorrow as we know more.
Doc is simply monitoring all day. Tomorrow we will have long chats with his pediatrician, nutrition and endocrine to figure out what is going on and what we need to do next. He's still got a rash on his face and arms and a touch on his legs. He's still red and a bit sweaty, not as clammy. He's incredibly sleepy and has been asleep or sleepy fussing most all day.
We just got back from the playroom where he spent almost an hr playing. Now he's laying back on his dad in the rocking chair watching a baby einstein video. Hoping he is able to get some decent sleep tonight. As of right now bob and i are at 38 hrs awake with MAYBE 3 hrs of cat naps. So we are dragging.
A dear friend of ours is sending us dinner tonight and a few extra meals to help cover food for the next day or two! We are so thankful to have amazing friends in our lives!
We will update tomorrow as we know more.
Eli's admitted
Eli's blood sugars have been running low since Friday evening. He has had alot of episodes of sweaty clammy to go along with it. We called the doc yesterday when his sugars had consistently stayed low. She had us bring him up to CMH. We packed him up and made the drive from Wichita into KC. We got to the ER around 12:30am and were admitted around 430am. Waiting on the doctors to round this morning to figure out what next. We will update more when we know more.
Thursday, June 30, 2011
Quick Thursday updates
still here. Just busy.
This week has been Emily's girl scout camp. She got hurt her 1st day there but has done well the rest of the week. She's enjoyed it and met friends. We are so glad that she's done well.
We have kept the others fairly busy. We've been swimming, to the Y, to dinner and a s'mores roast at a friends house, on walks, had special snacks, and watched movies! :) Today we are going to a friends for a special craft project!
Eli has struggled this week yet again with his weight and hydration. He also had constipation issues this week. His docs are all talking to try and figure out what next. My little man lost another 3 oz today. He's going to wheelchair clinic today to see about getting his straps fixed on his chair.
We are super nervous about these next few days with this horrible heat coming. We are travelling tomorrow and it's supposed to be 103 here and 105 PLUS in Wichita. Hoping my cars AC can keep up with that as Eli's body sure can't.
More updates soon.
This week has been Emily's girl scout camp. She got hurt her 1st day there but has done well the rest of the week. She's enjoyed it and met friends. We are so glad that she's done well.
We have kept the others fairly busy. We've been swimming, to the Y, to dinner and a s'mores roast at a friends house, on walks, had special snacks, and watched movies! :) Today we are going to a friends for a special craft project!
Eli has struggled this week yet again with his weight and hydration. He also had constipation issues this week. His docs are all talking to try and figure out what next. My little man lost another 3 oz today. He's going to wheelchair clinic today to see about getting his straps fixed on his chair.
We are super nervous about these next few days with this horrible heat coming. We are travelling tomorrow and it's supposed to be 103 here and 105 PLUS in Wichita. Hoping my cars AC can keep up with that as Eli's body sure can't.
More updates soon.
Monday, June 27, 2011
Monday Morning Memos
Yesterday was a nice day. We played games and hung out in the morning. We let little man get a nap while we all ate lunch. Then we headed out to our local rec center for swimming. They have the most amazing indoor pool. There are 2 separate pools. The one we spent the most time in never goes deeper than 3ft 3in. So the little ones were able to stand and be in the entire pool. It is a zero depth entry with a big water stand that flows along these big gutter lines. You can block the water and manipulate it. Then there is a huge tower that randomly dumps bucket, big spray areas and fountains, a lazy river that was beyond fun for the kiddos, and a huge slide. They also had noodles and swim paddles and such. Then the 2nd pool had a medium depth area for the older 2 with water basketball and such. As well as swim lanes. The oldest 3 went down the slide more times than I can count, and everyone enjoyed alot of rides around the lazy river. Eli wasn't sure what to think of the water, and was very nervous at first. He never specifically played in it, but did relax a bit and enjoy just being held in the water. About 45 minutes into it he started getting really fussy and his skin was cold and moddled. Bob and I took turns keeping him out of the water and cuddled up under a towel tucked against one of us. He was beyond exhausted and darned near crashed on us. He at this point got super hot and red and splotchy. Gotta love issues with controlling body temp. In the end we were at the pool right over 2 hrs. Everyone had a great time and we will definitely be going back soon!
Today Emily starts girl scout camp. She's excited to go and meet people and try out all of the activities. The boys aren't quite as happy about her leaving! :)
Yesterday I re-posted something that has been circulating around facebook. It was something that greatly touched me and brought tears to my eyes. It was an author unknown piece, not something I take credit for at all. It was beautifully written and an amazing tribute. I hope everyone else enjoys it as much as I do.
This coming weekend we head back to Wichita for the holiday. The kids are excited to see their grandparents and I'm excited to get together with my friends. Bob and I are even going to sneak out for an evening together! It will be nice to have a bit of time with everyone to just relax.
Today Bob is at a job interview. Fingers crossed that all goes well. Then this afternoon I need to get a menu finished up and head to the store. We are on vegetarian week 2. The kids are doing great. Last night we again tried a new recipes and everyone loved it. We've had to reconfigure our fridge to allow room for all the fruits and veggies. There are so many things that I never thought I would like, foods I have never been willing to try...my kids are the same. But we have been experimenting and trying so many different foods and so far haven't found many things we don't like. I'm so proud of our journey into a greener healthier lifestyle. The kids are doing amazing and we are hardly getting any complaints at all. Makes us more excited to take our next steps in the next few weeks!
Upcoming this week:
Emilys camp...Eli's AFO fittings, 4 different therapies, Eli's new glasses, new meds, new appts schedualed, feeding/weight issues figured out for tiny man, new vegetarian recipes, our trip to wichita. (I think that covers it but our week is constantly changing!)
More udpates and pics soon!
Today Emily starts girl scout camp. She's excited to go and meet people and try out all of the activities. The boys aren't quite as happy about her leaving! :)
Yesterday I re-posted something that has been circulating around facebook. It was something that greatly touched me and brought tears to my eyes. It was an author unknown piece, not something I take credit for at all. It was beautifully written and an amazing tribute. I hope everyone else enjoys it as much as I do.
This coming weekend we head back to Wichita for the holiday. The kids are excited to see their grandparents and I'm excited to get together with my friends. Bob and I are even going to sneak out for an evening together! It will be nice to have a bit of time with everyone to just relax.
Today Bob is at a job interview. Fingers crossed that all goes well. Then this afternoon I need to get a menu finished up and head to the store. We are on vegetarian week 2. The kids are doing great. Last night we again tried a new recipes and everyone loved it. We've had to reconfigure our fridge to allow room for all the fruits and veggies. There are so many things that I never thought I would like, foods I have never been willing to try...my kids are the same. But we have been experimenting and trying so many different foods and so far haven't found many things we don't like. I'm so proud of our journey into a greener healthier lifestyle. The kids are doing amazing and we are hardly getting any complaints at all. Makes us more excited to take our next steps in the next few weeks!
Upcoming this week:
Emilys camp...Eli's AFO fittings, 4 different therapies, Eli's new glasses, new meds, new appts schedualed, feeding/weight issues figured out for tiny man, new vegetarian recipes, our trip to wichita. (I think that covers it but our week is constantly changing!)
More udpates and pics soon!
Sunday, June 26, 2011
Some Mothers Get Babies with Something More....
SOME MOTHERS GET BABIES WITH SOMETHING MORE… My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that’s what she says. That’s what mothers have always said. Mothers lie. Truth be told, every mother wants a whole lot more.
Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.
Some mothers get babies with something more. Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?
I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery.
The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.”
You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder.
author unknown
Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.
Some mothers get babies with something more. Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?
I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery.
The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.”
You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder.
author unknown
Saturday, June 25, 2011
Updates and Pictures
Our kiddos had a great time at VBS. They met alot of new friends, learned new songs, made lots of cool crafts, and played lots of games. On their last day, Friday, we took tiny man and went for their assembly and stayed for the carnival. Here are a few pictures from VBS.
Eli enjoyed getting to go out and see people. All in all he's done pretty well. He's been running a low grade fever of and on. He's also been super fussy. I have had to talk to his dietician multiple times lately as Eli is losing weight. We have upped his feeds 3 times now and he's still losing. We are on this current increase until monday and then we up once more. If that doesn't work it's in the doctors hands. Here are a few pictures of my tiny from these last few days.
Today I went and got my hair done. I got it colored and cut and I love it! Here's a pic!
Tomorrow we are taking all of the kids swimming. They are really looking forward to it. We found an indoor pool at our local recreation center with the zero depth entry. It will be perfect for Eli to actually get to go with the family and enjoy water, without having to deal with the heat of outside.
This week wrapped up our 1st full vegetarian week. As many of you know we have been slowly switching our family over to vegetarian food for the last few months. We started with 1 meal a week and slowly increased as we found more recipes and experiment more with foods. This week we had only vegetarian. Lots of fresh fruits and veggies and lots of super yummy cooking. The kids did great with it and we are really loving it. We also made more household changes. We've done cloth diapers, we've used towels and such instead of paper products. This week we also made our own household all purpose cleaner, dish soap, toilet scrub, window cleaner, and laundry detergent. We've taken the process slowly and switched over 1 item at a time.
We'll see what's in store for next week! :)
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| Our good friends kiddos and ours. youngest to oldest. |
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| Eli and his best friend |
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| our good friends kids and our kids! |
Eli enjoyed getting to go out and see people. All in all he's done pretty well. He's been running a low grade fever of and on. He's also been super fussy. I have had to talk to his dietician multiple times lately as Eli is losing weight. We have upped his feeds 3 times now and he's still losing. We are on this current increase until monday and then we up once more. If that doesn't work it's in the doctors hands. Here are a few pictures of my tiny from these last few days.
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| Eli and his puppy (from his best friend pictured above with him) |
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| My super silly little man |
Tomorrow we are taking all of the kids swimming. They are really looking forward to it. We found an indoor pool at our local recreation center with the zero depth entry. It will be perfect for Eli to actually get to go with the family and enjoy water, without having to deal with the heat of outside.
This week wrapped up our 1st full vegetarian week. As many of you know we have been slowly switching our family over to vegetarian food for the last few months. We started with 1 meal a week and slowly increased as we found more recipes and experiment more with foods. This week we had only vegetarian. Lots of fresh fruits and veggies and lots of super yummy cooking. The kids did great with it and we are really loving it. We also made more household changes. We've done cloth diapers, we've used towels and such instead of paper products. This week we also made our own household all purpose cleaner, dish soap, toilet scrub, window cleaner, and laundry detergent. We've taken the process slowly and switched over 1 item at a time.
We'll see what's in store for next week! :)
Wednesday, June 22, 2011
Quick Updates
Multiple calls from docs yesterday.
Eli's main pediatrician called to again discuss all of the test results and what the "plan" was at this point. He is getting all of the orders done for all the new meds, a well as for the AFO's, car seat testing, and endocrinologists. He agrees with the possible need for growth hormones although he definitely wants the endocrine doc to deal with all of that. Discussed the fluid needs and all of those things a bit more as well.
Also got a call from the urologist saying that he urine catch looked good. Everyone is assuming at this point it is in fact a hydration issue not a kidney issue. So that's good.
Eli has also been offered a spot in a preschool class starting this fall. It's thru his therapy center. He would go 5 days a week for 2 1/2 hrs each morning. He would get intense OT, ST, and feeding therapy. We aren't sure if this is something we are willing to do, as he will only be 20 months old when class begins. It is something we are thinking about, but no firm decisions.
Eli also met with his in home speech therapist this last week. She brought him a signing language DVD and he watched it for the first time yesterday. He enjoyed it. We are pushing more and more with signing and hoping to start seeing some glimmer of understanding soon. We are also working alot on mimicing and hoping to see some soon as well.
Eli has struggled a bit these last few nights with his O2 levels and has dropped pretty quickly after falling asleep. No other symptoms so far so we are hoping it's just one of his weird body phases that he goes thru sometimes.
The oldest 4 are busy this week with VBS. They are really enjoying it. It's been a great time for them to get out and meet new people. This weekend we are going to go swimming for the first time and the kids are super excited about that. It will be Eli's 1st time ever to go to a swimming pool. Hopefully he enjoys it as well.
Bob and I are about the same. Just making it thru each day. We are hoping to get back to the gym next week and really looking forward to having that time to exercise and de-stress a bit.
I will update more later this week as we have more info!
Eli's main pediatrician called to again discuss all of the test results and what the "plan" was at this point. He is getting all of the orders done for all the new meds, a well as for the AFO's, car seat testing, and endocrinologists. He agrees with the possible need for growth hormones although he definitely wants the endocrine doc to deal with all of that. Discussed the fluid needs and all of those things a bit more as well.
Also got a call from the urologist saying that he urine catch looked good. Everyone is assuming at this point it is in fact a hydration issue not a kidney issue. So that's good.
Eli has also been offered a spot in a preschool class starting this fall. It's thru his therapy center. He would go 5 days a week for 2 1/2 hrs each morning. He would get intense OT, ST, and feeding therapy. We aren't sure if this is something we are willing to do, as he will only be 20 months old when class begins. It is something we are thinking about, but no firm decisions.
Eli also met with his in home speech therapist this last week. She brought him a signing language DVD and he watched it for the first time yesterday. He enjoyed it. We are pushing more and more with signing and hoping to start seeing some glimmer of understanding soon. We are also working alot on mimicing and hoping to see some soon as well.
Eli has struggled a bit these last few nights with his O2 levels and has dropped pretty quickly after falling asleep. No other symptoms so far so we are hoping it's just one of his weird body phases that he goes thru sometimes.
The oldest 4 are busy this week with VBS. They are really enjoying it. It's been a great time for them to get out and meet new people. This weekend we are going to go swimming for the first time and the kids are super excited about that. It will be Eli's 1st time ever to go to a swimming pool. Hopefully he enjoys it as well.
Bob and I are about the same. Just making it thru each day. We are hoping to get back to the gym next week and really looking forward to having that time to exercise and de-stress a bit.
I will update more later this week as we have more info!
Tuesday, June 21, 2011
Monday, June 20, 2011
Neurologist, Optometrist, and Speech
Eli's neurologist called today. He and I spent almost 20 minutes on the phone. He simply discussed all of the test results (which by this point we already knew). He also discussed all of the amino acids and vitamin supplements that he wanted to start. He is upping his levocarnitine since he's been on that for months and his levels are still showing major deficiencies. He also discussed a sick plan that needs to be in place. Fast fluids, and using d10, also quick use of TPN as needed and all of those types of things. He agreed that these things can't wait on a mito kid like they can on a "normal" child. He is going to get a full care plan put together as well as get all of the meds situated. He also is sending out a referral to the endocrinologist as he's concerned about Eli's lack of growing and excessive sweating with sleep.
I'm so hoping we are finally moving in the right direction with all of these test results.
Eli also had an appt with his new optometrist today. He says there was just a slight shift, but not enough to change his script. We also discussed Eli's light sensitivities. He is going to change Eli's lenses over to the transitions lenses so he will have some protection from bright lights. He is going to see Eli every 3 months to keep a close eye on the health of the retina, cornea and optic nerve. He is also sending Eli to an opthamologist so they can keep a close eye on if surgery will be needed in the future, although it looks like glasses have been working well. They are getting glasses ordered so he will get his new ones in a few weeks!
Eli also had his in home speech today and did pretty well. She has brought him a signing DVD and wants to see how he responds to it. We've also started the process to get an IPAD. We like his new in home speech therapist and are excited to see how Eli progresses with her.
Tomorrow begins VBS for the older 4 and they are excited to go and meet new people!
I'm so hoping we are finally moving in the right direction with all of these test results.
Eli also had an appt with his new optometrist today. He says there was just a slight shift, but not enough to change his script. We also discussed Eli's light sensitivities. He is going to change Eli's lenses over to the transitions lenses so he will have some protection from bright lights. He is going to see Eli every 3 months to keep a close eye on the health of the retina, cornea and optic nerve. He is also sending Eli to an opthamologist so they can keep a close eye on if surgery will be needed in the future, although it looks like glasses have been working well. They are getting glasses ordered so he will get his new ones in a few weeks!
Eli also had his in home speech today and did pretty well. She has brought him a signing DVD and wants to see how he responds to it. We've also started the process to get an IPAD. We like his new in home speech therapist and are excited to see how Eli progresses with her.
Tomorrow begins VBS for the older 4 and they are excited to go and meet new people!
Sunday, June 19, 2011
Family Updates
I haven't done a family update in a while so it seemed like a good time!
Emily ~ Alot has been going on with her. She has joined the girl scouts first of all. She had her first get together last week. They made shirts and SWAPS for camp. She will be going to camp with them the last week of June. They will spend 4 days and 1 night at camp. She's excited and a bit nervous. She has always struggled a bit with making friends so this will be a great experience for her! She will be going to VBS this next week and is also looking forward to that. She has met a few friends in the area and has spent some time playing outside with them as well.
Jace ~ He's doing sooo much better. He had an appt last week with his pediatrician who got him in immediately for an appt with a doctor who specializes with special kiddos and medications for them. She agreed that Jace's meds weren't right AND that his diagnosis wasn't quite right. She agreed with the ADHD but also says he has an impulsivity / reactivity disorder. She has added a new med and given some creative ideas to help deal with the anger and physical violence. She said that ultimately the med will probably need to be doubled and a 2nd med added but wants to take it slow. We have already seen a huge change in his behavior. It isn't perfect but sooo much better already. The ideas to deal with violence also seem to be helping some. He will meet with her frequently as things get adjusted. Jace will also be going to VBS next week. He has met multiple kids in the neighborhood as well. A little boy has spent alot of time over here and there is also a little girl Jace's age who says she loves Jace and has pinned him to the ground and kissed him! :)
Benjamin ~ Ben is doing ok. His meds aren't working well either. When we moved they were in the middle of getting him to the right dose. He will be meeting with the same doctor that Jace is meeting with. He has also met a few friends in the area and has played a bit outside with everyone. He is mostly enjoying having a large house with 4 floors to roam around. He enjoys having his own time and space to be in. He will also be going to VBS and is looking forward to it.
Ariana ~ She's the same little diva as always. She struggles to find her space in her siblings. She's younger and so girly. She doesn't share the same interests as everyone else. This can cause alot of issues sometimes. She will hopefully be going to PreK in the fall and we are really hoping that helps her settle in a bit more. She will be going to VBS as well and she's very excited to finally be old enough to attend!
Elias ~ He's doing ok this week. A bit of a struggle with the heat, so pushing more fluids. He's still losing weight and noboby is sure why. His feeds have been upped twice in the last 10 days but the weight is still coming off. He's been incredibly clingy and wants Bob or I to always be holding him. Makes for fun times trying to get things done!
Bob and I are ok. Just trying to get life resituated. He got all of his unemployment papers finished up online and now we wait. He is applying for all the jobs he can possibly find. We are hoping to find a job soon. Unemployment is lovely in theory, but a job is our preference.
Today we are going to spend the day out and about as a family. We are going to the Art Museum for the day and then home for one of our family favorite dinners and a dessert of Bob's picking! The kids are going to help me make the dessert for fathers day! They are super excited!
This afternoon or tomorrow I will get pictures up from our day out today!
Happy fathers day to my dad and my husband! You both are amazing and I can't imagine life without you !!!!
Emily ~ Alot has been going on with her. She has joined the girl scouts first of all. She had her first get together last week. They made shirts and SWAPS for camp. She will be going to camp with them the last week of June. They will spend 4 days and 1 night at camp. She's excited and a bit nervous. She has always struggled a bit with making friends so this will be a great experience for her! She will be going to VBS this next week and is also looking forward to that. She has met a few friends in the area and has spent some time playing outside with them as well.
Jace ~ He's doing sooo much better. He had an appt last week with his pediatrician who got him in immediately for an appt with a doctor who specializes with special kiddos and medications for them. She agreed that Jace's meds weren't right AND that his diagnosis wasn't quite right. She agreed with the ADHD but also says he has an impulsivity / reactivity disorder. She has added a new med and given some creative ideas to help deal with the anger and physical violence. She said that ultimately the med will probably need to be doubled and a 2nd med added but wants to take it slow. We have already seen a huge change in his behavior. It isn't perfect but sooo much better already. The ideas to deal with violence also seem to be helping some. He will meet with her frequently as things get adjusted. Jace will also be going to VBS next week. He has met multiple kids in the neighborhood as well. A little boy has spent alot of time over here and there is also a little girl Jace's age who says she loves Jace and has pinned him to the ground and kissed him! :)
Benjamin ~ Ben is doing ok. His meds aren't working well either. When we moved they were in the middle of getting him to the right dose. He will be meeting with the same doctor that Jace is meeting with. He has also met a few friends in the area and has played a bit outside with everyone. He is mostly enjoying having a large house with 4 floors to roam around. He enjoys having his own time and space to be in. He will also be going to VBS and is looking forward to it.
Ariana ~ She's the same little diva as always. She struggles to find her space in her siblings. She's younger and so girly. She doesn't share the same interests as everyone else. This can cause alot of issues sometimes. She will hopefully be going to PreK in the fall and we are really hoping that helps her settle in a bit more. She will be going to VBS as well and she's very excited to finally be old enough to attend!
Elias ~ He's doing ok this week. A bit of a struggle with the heat, so pushing more fluids. He's still losing weight and noboby is sure why. His feeds have been upped twice in the last 10 days but the weight is still coming off. He's been incredibly clingy and wants Bob or I to always be holding him. Makes for fun times trying to get things done!
Bob and I are ok. Just trying to get life resituated. He got all of his unemployment papers finished up online and now we wait. He is applying for all the jobs he can possibly find. We are hoping to find a job soon. Unemployment is lovely in theory, but a job is our preference.
Today we are going to spend the day out and about as a family. We are going to the Art Museum for the day and then home for one of our family favorite dinners and a dessert of Bob's picking! The kids are going to help me make the dessert for fathers day! They are super excited!
This afternoon or tomorrow I will get pictures up from our day out today!
Happy fathers day to my dad and my husband! You both are amazing and I can't imagine life without you !!!!
Wednesday, June 15, 2011
Answers
I am sitting here with an envelope full of 69 pages of Eli's report. We got it this afternoon and have already read thru it like 5 times.
Stage 1 of our journey has finally ended.
We found out at 18 weeks of pregnancy on July 28th, 2009 that there was a problem with our little man. We found out today at 18 months of age what that problem is.
Eli has Mitochondrial Disease Complex I and Complex III and OXPHOS. He also has multiple deficiencies, immune system issues and multiple other things.
I am sooo relieved to finally have an answer, but heartbroken as well. Not having 100% definitive results gave that tiny glimmer that they could all be wrong, and that glimmer is completely gone now.
We are unsure what's next. Atlanta wants Bob and I to come for a long sit down talk with them. Eli's pediatrician here is getting rush appts with neurology and genetics.
I am slightly dazed as I can't believe we are here, that this is truely the road we are on.
Right now I don't have much to say as we as a family are still trying to absorb it all. I will update more in a few days. Right now I just need to snuggle my little man.
Stage 1 of our journey has finally ended.
We found out at 18 weeks of pregnancy on July 28th, 2009 that there was a problem with our little man. We found out today at 18 months of age what that problem is.
Eli has Mitochondrial Disease Complex I and Complex III and OXPHOS. He also has multiple deficiencies, immune system issues and multiple other things.
I am sooo relieved to finally have an answer, but heartbroken as well. Not having 100% definitive results gave that tiny glimmer that they could all be wrong, and that glimmer is completely gone now.
We are unsure what's next. Atlanta wants Bob and I to come for a long sit down talk with them. Eli's pediatrician here is getting rush appts with neurology and genetics.
I am slightly dazed as I can't believe we are here, that this is truely the road we are on.
Right now I don't have much to say as we as a family are still trying to absorb it all. I will update more in a few days. Right now I just need to snuggle my little man.
Monday, June 13, 2011
results are in KC
We got the long awaited email this morning. Eli's results are in. They have been sent from Atlanta to his doc in KC. I have already talked to both offices this morning. We are waiting for the doc here to get them and read them over and then decide if he wants to meet in person or if he will give them over the phone. Once we have spoken with a doc about them we can have our own copy. I'm so anxious and nervous and scared and fidgety. For those new to Eli's journey these are his Mitochondrial results. They ran 27 tests in April and the answers are finally here. i will update today as we know more.
Sunday, June 12, 2011
Back for real this time!!!!
I apologize for not actually getting back on and updating. We got internet and our computer promptly crashed. It was unfixable.
It's been a LOOOOOONG week. Alot has happened and I'm not even sure where to start.
We have been interviewing, orientating and training nurses. This has been such a long exhausting process for all of us. We MAY be at the point where we have a good staff but unfortunately it's to early to tell. When finding nursing there are so many things to consider. Are they in general a good nurse? Are they a good pediatric nurse? Are they a good personality fit for Eli, us, and the kids? How are they with schedules and flexibility? It's just way harder than good nurse, done.
Eli has also been getting situated with therapy. He is going to physical, occupational and speech therapy at a center based therapy group. We are really impressed with them so far and are happy with their current goals for him. He will also have inhome based therapy, mostly focusing on communication. The goal is to get Eli an ipad going and to begin working on a PECS based communication as well as still presenting him with alot of signing opportunities. Eli tried a pair of shoes this last week and his feet immediately buckled them out. His PT wants him in a good high top shoe and his doctor has send the orders over for AFO's. His OT is working on alot of sensory things and trying to introduce him to a wide range of different textures.
He also had an appt with his pediatrician/medical complex doctor. We love him and think he's a great doc for Eli. We all met for almost 3 hours. We went thru each and every system and doc and discussed where we were with each and what we needed next from each. He is getting Eli into an eye doctor up here to get his glasses fixed and get his eyes re-checked to make sure his script is still good. He is also getting him into the car seat clinic to get him fitted into a special car seat to put him in a better position for breathing while in the car. He's getting in touch with the pulmonologist to get O2 added to his CPAP so we won't have to keep switching back and forth between the 2 at night when he drops. He also agrees with the neurologist about Eli being functionally deaf. He agrees with getting him into the Kansas school for the deaf and pushing forward with the ipad and signing. We went thru all of Eli's equipment and all of the supplies that we have and all that we still need. We also discussed Eli's struggle with the heat and hydration and with his decrease in urine. He has a call into the urologist and is considering getting Eli into an endocrinologist.
Eli also met with his cardiologist this week. His cardio is going to go back and look at each ECHO and try to determine if the leason is in fact growing or if it's simply measured from a different angle or what not. We will wait to hear back from him soon.
Eli started running a fever yesterday morning which of course brought on the high heart rate. He still has both today but no other symptoms. We are hoping that it doesn't turn into anything more. He got to go out for a bit yesterday afternoon and today. He enjoyed being outside and getting to watch people around him.
My parents and Eli's nurse from Wichita, Paula, came up to visit for the weekend. We celebrated Ben's 6th birthday. Saturday we went to Legends and had lunch at T-Rex. This is one of the coolest restaurants and the kids absolutely love it there! We had a great time visiting with everyone and Eli was beyond happy to have his paula paula for a few days!
The last piece of news is in regards to Bob's job. His employer had been working to team up with another company and launch their partnership. So bob and many other people were hired for this launch. It didn't happen, and didn't happen. So many delays. On Friday a group of them got laid off...bob's group was one that did in fact get laid off. We are confident that he will find another job quickly but it doesn't change the fact that we definitely weren't expecting this massive bump in the road.
Like always we will simply stick together as a family and get thru all of it.
Alot of things going on right now, some that I can't mention right yet, but we definitely could use any and all prayers and positive thoughts possible!
Here are a few pictures from this past weekend.
It's been a LOOOOOONG week. Alot has happened and I'm not even sure where to start.
We have been interviewing, orientating and training nurses. This has been such a long exhausting process for all of us. We MAY be at the point where we have a good staff but unfortunately it's to early to tell. When finding nursing there are so many things to consider. Are they in general a good nurse? Are they a good pediatric nurse? Are they a good personality fit for Eli, us, and the kids? How are they with schedules and flexibility? It's just way harder than good nurse, done.
Eli has also been getting situated with therapy. He is going to physical, occupational and speech therapy at a center based therapy group. We are really impressed with them so far and are happy with their current goals for him. He will also have inhome based therapy, mostly focusing on communication. The goal is to get Eli an ipad going and to begin working on a PECS based communication as well as still presenting him with alot of signing opportunities. Eli tried a pair of shoes this last week and his feet immediately buckled them out. His PT wants him in a good high top shoe and his doctor has send the orders over for AFO's. His OT is working on alot of sensory things and trying to introduce him to a wide range of different textures.
He also had an appt with his pediatrician/medical complex doctor. We love him and think he's a great doc for Eli. We all met for almost 3 hours. We went thru each and every system and doc and discussed where we were with each and what we needed next from each. He is getting Eli into an eye doctor up here to get his glasses fixed and get his eyes re-checked to make sure his script is still good. He is also getting him into the car seat clinic to get him fitted into a special car seat to put him in a better position for breathing while in the car. He's getting in touch with the pulmonologist to get O2 added to his CPAP so we won't have to keep switching back and forth between the 2 at night when he drops. He also agrees with the neurologist about Eli being functionally deaf. He agrees with getting him into the Kansas school for the deaf and pushing forward with the ipad and signing. We went thru all of Eli's equipment and all of the supplies that we have and all that we still need. We also discussed Eli's struggle with the heat and hydration and with his decrease in urine. He has a call into the urologist and is considering getting Eli into an endocrinologist.
Eli also met with his cardiologist this week. His cardio is going to go back and look at each ECHO and try to determine if the leason is in fact growing or if it's simply measured from a different angle or what not. We will wait to hear back from him soon.
Eli started running a fever yesterday morning which of course brought on the high heart rate. He still has both today but no other symptoms. We are hoping that it doesn't turn into anything more. He got to go out for a bit yesterday afternoon and today. He enjoyed being outside and getting to watch people around him.
My parents and Eli's nurse from Wichita, Paula, came up to visit for the weekend. We celebrated Ben's 6th birthday. Saturday we went to Legends and had lunch at T-Rex. This is one of the coolest restaurants and the kids absolutely love it there! We had a great time visiting with everyone and Eli was beyond happy to have his paula paula for a few days!
The last piece of news is in regards to Bob's job. His employer had been working to team up with another company and launch their partnership. So bob and many other people were hired for this launch. It didn't happen, and didn't happen. So many delays. On Friday a group of them got laid off...bob's group was one that did in fact get laid off. We are confident that he will find another job quickly but it doesn't change the fact that we definitely weren't expecting this massive bump in the road.
Like always we will simply stick together as a family and get thru all of it.
Alot of things going on right now, some that I can't mention right yet, but we definitely could use any and all prayers and positive thoughts possible!
Here are a few pictures from this past weekend.
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| The 7th of us |
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| The 7 of us plus my parents and paula! |
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| Paula and Eli |
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| My dad and the oldest 2 boys |
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| My beautiful Emily |
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| My incredibly goofy Jace |
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| My ridiculously adorable birthday boy Ben |
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| my tom boy princess ari |
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| My super big smiling tiny man |
Monday, June 6, 2011
Super quick check in
I'm exhausted and Ben is screaming so this will be beyond short. I just wanted to pop on now that we finally have internet. We are all still here, just finishing up unpacking and getting the house organized. Just got internet hooked up and situated this evening.
I promise to get on tomorrow for a full update!
I promise to get on tomorrow for a full update!
Tuesday, May 24, 2011
Tiny's got wheels!
Today was Eli's wheelchair appt. We were there for 3 1/2 hrs. They got it all fitted and adjusted and got his tray made. He absolutely loves it and was happy as could be going down the hallway and reading a book on his tray. He's wiped out now and has been asleep for quite some time and probably will be for the rest of the night.
The pharmacy has had an issue getting one of his meds sent out and therefore he is completely out. It's of course his GERD medication and he's choking and gagging even worse than normal. Hopefully they get it compounded and out here quickly tomorrow. His upper lungs still sound a bit yucky, mostly on the right. We are keeping a close eye on it all.
The pharmacy has had an issue getting one of his meds sent out and therefore he is completely out. It's of course his GERD medication and he's choking and gagging even worse than normal. Hopefully they get it compounded and out here quickly tomorrow. His upper lungs still sound a bit yucky, mostly on the right. We are keeping a close eye on it all.
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| tiny man checking out his new wheelchair |
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| Exhausted after his appt |
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| Sound asleep after his appt |
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| Here is the picture of Bob and I meeting Josh Groban! |
Monday, May 23, 2011
We are still here!!
I apologize for being MIA these last 10 days.
We have been moving. I spent a week packing and started getting a bit sick. I thought it was allergies, finaly went to the doc as it was getting worse and worse. Come to find out I had pneumonia. I got so weak I could hardly move, and breathing was a struggle. Lots of meds and rest later I'm somewhat better. Bob spent a few days in town helping finish up all the packing. The movers came this last Thursday and all of our things are now in KC.
During the move Emily got sick as well. Her asthma went out of control. The school called saying her O2 was 86. Rushed to the doc for tons of breathing treatments and steroids. It wouldn't come above 95. The next day the same thing happened. They doubled the breathing treatments and steroids. Still stayed around 95 to 96 for days. She is finally able to breath without having to work so hard and her O2 is hanging out around 98. Much better. She's hoping to try school today as she was out at the end of last week.
My little man. He's "stable" at the moment. It's been a rough time for him. His O2 has been suprisingly pretty good, but the last 2 days his upper lobes have sounded junky. We are hoping with agressive suctioning that will keep it from settling farther down in his lungs. He's running a bit of a low grade, but not enough for major concern. His heartrate has been strangely low for him, which we will be calling the cardiologist on Monday. With his heart issues and this dang calcified leason in his heart, we report any changes and let his cardio team decide what next! He has struggled the last few days with dehydration. He can't handle any heat at all. The air conditioner has had to be turned down low to allow his body to be able to keep itself cool enough. We are pushing as much free fluids as possible and as of last night he was finally peeing again. His new meds to help lower his secretions don't seem to be working effectively enough. A call is in to his pulmonologist to find out if we can slightly up the dose. This Tuesday Eli's wheelchair comes in. He will spend a few hours at seating clinic getting all the final adjustments done! We are excited to give him this opportunity to be up and moving around even when he's to tired to crawl on his own. Eli has also been trialing a new car seat this week. He struggles to breath well in the car and will routinely drop his O2 levels to 71. His pulmonologist suggested he meet with a therapist trained in carseat positioning. She has loaned us a seat to see if we can get some better positioning in the car. He has done a bit better with the new seat but is still dropping into the low 80's. Luckily with the move coming up soon he won't be in the vehicle as much, but will still obviously be in there. We are hoping soon to find something that will make it easiest for him to breath!
This past Saturday was an AMAZING night. My mom got Bob and I tickets to see Josh Groban in concert. It was my birthday present from my parents! Wednesday evening the phone rang and it was one of the hosts from our local radio station. They have followed Eli's journey (they are the ones who arrainged for Santa to come to Eli, since Eli couldn't go to Santa) and wanted to do something for Bob and I. They had arrainged back stage passes for us to meet josh groban and get pictures and autographs! I was beyond excited! Saturday evening we did get to meet him, and even got to chat with him about Eli and give him one of Eli's cards. He was an amazing guy and it was such a great experience. We were enjoying the concert and listening to all of the amazing songs. Next thing we know Josh is talking before going into his next song. He was talking about meeting us backstage and our little mans journey and fight to stay strong. He dedicate a song in front of 6000+ people to our little man! I curled up into my husband and cried as I listened to him sing for my tiny man.
No recording was allowed during the concert, but I wanted to share a video of the song. Here is the link to view the video and hear the song.
http://youtu.be/XL71Za0Kpqg
I promise to keep up with blogging. The kids and I are at my parents for this week and we officially move to KC friday. Our life is changing, we have all vowed to go into this and to stay strong for our little man. Sometimes I can't believe this is all happening. We are leaving our home, our family, our friends, all to be close to the childrens hospital. Who moves for a children's hospital?! Parents of medically complex kiddos do. I know it's not going to be easy, but I know we are doing what is best for Eli. I wish I could be as strong as my little man. Watching him get the last bit of energy to push himself into someone's lap. Everything he goes thru, smiling as he goes. He wakes up hooked up to tubes and machines and looks up at me and smiles. He's amazing and is constantly teaching everyone he meets the true meaning of life. We are constantly told how much Eli and our family have touched people, and we feel we have been blessed to have met so many other amazing people thru Eli's journey!
Pictures soon! I have to find my camera cable!
We have been moving. I spent a week packing and started getting a bit sick. I thought it was allergies, finaly went to the doc as it was getting worse and worse. Come to find out I had pneumonia. I got so weak I could hardly move, and breathing was a struggle. Lots of meds and rest later I'm somewhat better. Bob spent a few days in town helping finish up all the packing. The movers came this last Thursday and all of our things are now in KC.
During the move Emily got sick as well. Her asthma went out of control. The school called saying her O2 was 86. Rushed to the doc for tons of breathing treatments and steroids. It wouldn't come above 95. The next day the same thing happened. They doubled the breathing treatments and steroids. Still stayed around 95 to 96 for days. She is finally able to breath without having to work so hard and her O2 is hanging out around 98. Much better. She's hoping to try school today as she was out at the end of last week.
My little man. He's "stable" at the moment. It's been a rough time for him. His O2 has been suprisingly pretty good, but the last 2 days his upper lobes have sounded junky. We are hoping with agressive suctioning that will keep it from settling farther down in his lungs. He's running a bit of a low grade, but not enough for major concern. His heartrate has been strangely low for him, which we will be calling the cardiologist on Monday. With his heart issues and this dang calcified leason in his heart, we report any changes and let his cardio team decide what next! He has struggled the last few days with dehydration. He can't handle any heat at all. The air conditioner has had to be turned down low to allow his body to be able to keep itself cool enough. We are pushing as much free fluids as possible and as of last night he was finally peeing again. His new meds to help lower his secretions don't seem to be working effectively enough. A call is in to his pulmonologist to find out if we can slightly up the dose. This Tuesday Eli's wheelchair comes in. He will spend a few hours at seating clinic getting all the final adjustments done! We are excited to give him this opportunity to be up and moving around even when he's to tired to crawl on his own. Eli has also been trialing a new car seat this week. He struggles to breath well in the car and will routinely drop his O2 levels to 71. His pulmonologist suggested he meet with a therapist trained in carseat positioning. She has loaned us a seat to see if we can get some better positioning in the car. He has done a bit better with the new seat but is still dropping into the low 80's. Luckily with the move coming up soon he won't be in the vehicle as much, but will still obviously be in there. We are hoping soon to find something that will make it easiest for him to breath!
This past Saturday was an AMAZING night. My mom got Bob and I tickets to see Josh Groban in concert. It was my birthday present from my parents! Wednesday evening the phone rang and it was one of the hosts from our local radio station. They have followed Eli's journey (they are the ones who arrainged for Santa to come to Eli, since Eli couldn't go to Santa) and wanted to do something for Bob and I. They had arrainged back stage passes for us to meet josh groban and get pictures and autographs! I was beyond excited! Saturday evening we did get to meet him, and even got to chat with him about Eli and give him one of Eli's cards. He was an amazing guy and it was such a great experience. We were enjoying the concert and listening to all of the amazing songs. Next thing we know Josh is talking before going into his next song. He was talking about meeting us backstage and our little mans journey and fight to stay strong. He dedicate a song in front of 6000+ people to our little man! I curled up into my husband and cried as I listened to him sing for my tiny man.
No recording was allowed during the concert, but I wanted to share a video of the song. Here is the link to view the video and hear the song.
http://youtu.be/XL71Za0Kpqg
I promise to keep up with blogging. The kids and I are at my parents for this week and we officially move to KC friday. Our life is changing, we have all vowed to go into this and to stay strong for our little man. Sometimes I can't believe this is all happening. We are leaving our home, our family, our friends, all to be close to the childrens hospital. Who moves for a children's hospital?! Parents of medically complex kiddos do. I know it's not going to be easy, but I know we are doing what is best for Eli. I wish I could be as strong as my little man. Watching him get the last bit of energy to push himself into someone's lap. Everything he goes thru, smiling as he goes. He wakes up hooked up to tubes and machines and looks up at me and smiles. He's amazing and is constantly teaching everyone he meets the true meaning of life. We are constantly told how much Eli and our family have touched people, and we feel we have been blessed to have met so many other amazing people thru Eli's journey!
Pictures soon! I have to find my camera cable!
Friday, May 13, 2011
Eli's struggle
It's been a rough week. Eli started struggling alot more....AGAIN.
We finally got the call from the Hematologist. His hemoc doc, cardiologist, and ECHO radiologist all met. The spot in his heart is no longer a blood clot, it is a calcified leason in the left atrium. This is why it is growing. He is off of the blood thinners as they will no longer help. Hemoc is going to do a full work up in 32 days to find out if he has a long term blood clotting disorder or something underlying that has caused the blood clots or if it's simply from the port. Now cardio is in charge as this is specificially a heart related issue at this point. Nobody is sure quite yet what is going to happen. He will have another ECHO in 4 weeks. If it continues to grow that is going to be a HUGE issue as it will block the flow of blood in his heart....
The new allergy meds don't seem to be working. Last night was one of his worst nights in I don't know how long. He started dropping his sats at 1am. I would rub his back vigorously and he would stay at 77 for his O2. I ended up having to put him on O2. He still consistently dropped his sats into the low 80's for over 4 hrs. He was so mucusy he was having trouble breathing. He was coughing and choking. No position seemed to help him at all. His heartrate was running between 175 and 194. By this morning he was miserable. He has slept a huge chunk of the day, and his O2 has still run low for his normal. His HR has still been running a bit high. I kept suctioning but it's to far down to get it. I put a call into the doctor 1st thing this morning. Lots of discussions with docs and nurses. His main doctor says that his secretions are just out of control and he's not handling them well, especially at night. The more secretions he has the more it wears him out trying to keep them under control, which means he handles them even worse. If that makes sense. It's an endless cycle. His main doctor has ordered catheters to suction him and wants us to do that as often as needed. If we can't clear it with the cath suctioning at home we need to take him to the ER. His doc is already discussing the need to order overnight nursing to help take care of Eli at night since that is when he struggles the most. I'm hoping it doesn't come to that.
I'm really struggling to watch my little man struggle with things he once had no trouble doing. I remember a day where he could curl up and nurse. It seems like such a distant memory. It's gone and so many other things that once were, are gone as well. In the beginning they would tell us that each change was just temporary, that he would get past it and gain that skill back. It's not so. They know it and I know it. They have stopped promising those kind of things.
I'm scared. I'm so very scared. I don't know what to do.
We finally got the call from the Hematologist. His hemoc doc, cardiologist, and ECHO radiologist all met. The spot in his heart is no longer a blood clot, it is a calcified leason in the left atrium. This is why it is growing. He is off of the blood thinners as they will no longer help. Hemoc is going to do a full work up in 32 days to find out if he has a long term blood clotting disorder or something underlying that has caused the blood clots or if it's simply from the port. Now cardio is in charge as this is specificially a heart related issue at this point. Nobody is sure quite yet what is going to happen. He will have another ECHO in 4 weeks. If it continues to grow that is going to be a HUGE issue as it will block the flow of blood in his heart....
The new allergy meds don't seem to be working. Last night was one of his worst nights in I don't know how long. He started dropping his sats at 1am. I would rub his back vigorously and he would stay at 77 for his O2. I ended up having to put him on O2. He still consistently dropped his sats into the low 80's for over 4 hrs. He was so mucusy he was having trouble breathing. He was coughing and choking. No position seemed to help him at all. His heartrate was running between 175 and 194. By this morning he was miserable. He has slept a huge chunk of the day, and his O2 has still run low for his normal. His HR has still been running a bit high. I kept suctioning but it's to far down to get it. I put a call into the doctor 1st thing this morning. Lots of discussions with docs and nurses. His main doctor says that his secretions are just out of control and he's not handling them well, especially at night. The more secretions he has the more it wears him out trying to keep them under control, which means he handles them even worse. If that makes sense. It's an endless cycle. His main doctor has ordered catheters to suction him and wants us to do that as often as needed. If we can't clear it with the cath suctioning at home we need to take him to the ER. His doc is already discussing the need to order overnight nursing to help take care of Eli at night since that is when he struggles the most. I'm hoping it doesn't come to that.
I'm really struggling to watch my little man struggle with things he once had no trouble doing. I remember a day where he could curl up and nurse. It seems like such a distant memory. It's gone and so many other things that once were, are gone as well. In the beginning they would tell us that each change was just temporary, that he would get past it and gain that skill back. It's not so. They know it and I know it. They have stopped promising those kind of things.
I'm scared. I'm so very scared. I don't know what to do.
Monday, May 9, 2011
Ridiculously fast update
We are home. We got in early this morning. All the kids went to school and I got everything unpacked and some laundry done.
This afternoon Eli fought his nap so hard. Tonight he went to bed and promptly began screaming. His HR is of course thru the roof. He has been quiet for an all of 5 minutes and he's already dropped his O2 below alarm setting twice. It's going to be a loooong night.
I will get pictures put up tomorrow!
This afternoon Eli fought his nap so hard. Tonight he went to bed and promptly began screaming. His HR is of course thru the roof. He has been quiet for an all of 5 minutes and he's already dropped his O2 below alarm setting twice. It's going to be a loooong night.
I will get pictures put up tomorrow!
Sunday, May 8, 2011
Quick Sunday morning update
Eli's hemoc pa called. His echo showed that his blood clot went from 3 x 3 to 3.5 to 5.5 which is definitely not what it is supposed to do. This means that the lovenox isn't working any more. She will meet with eli's hemoc doc Monday and they will make a plan and call us back. I wish my little man could just catch a break.
Ben is doing a bit better again this morning. He has eaten more and more and is consistently drinking. He's still got a lot of sensory overload issues but getting better.
Happy mothers day to all!!!
Ben is doing a bit better again this morning. He has eaten more and more and is consistently drinking. He's still got a lot of sensory overload issues but getting better.
Happy mothers day to all!!!
Saturday, May 7, 2011
In KC
We are in KC. We got here yesterday. As of yesterday morning Ben was still struggling alot. He wasn't able to stand up still and was hardly drinking. We all loaded up and headed to KC. He drank some sips of pedialyte on the road. When we got here he actually had a bit of energy and ate some applesauce and drank some more pedialyte. He was moving slower, but atleast moving on his own. His sensory issues are in major overload. By last night he all of a sudden had a meltdown and freaked out for food and drink. He ate 2 mini cheeseburgers, drank an apple juice and a whole cup of water. Last night he didn't have any nightmares. This morning he's having trouble staying warm and ate a few bites for breakfast, but he did drink his juice. Hoping to see more improvement as the day goes on.
Eli had his pediatrician check up yesterday as well. His ears aren't still infected. His allergies are so out of control that there is a ton of pressure behind his ear drums which is causing them to hurt, as well as causing them to be flat on the tympanogram. The doc put him on allergy meds and is hoping that makes a difference. So that is 2 new meds in 2 days. Lovely.
We will spend the rest of the weekend in KC. I feel better being closer to the childrens hospital right now as we make sure Ben is solidly on the road to recover. The kids and I will probably head back to Wichita Monday morning assuming all is well.
More updates soon.
Eli had his pediatrician check up yesterday as well. His ears aren't still infected. His allergies are so out of control that there is a ton of pressure behind his ear drums which is causing them to hurt, as well as causing them to be flat on the tympanogram. The doc put him on allergy meds and is hoping that makes a difference. So that is 2 new meds in 2 days. Lovely.
We will spend the rest of the weekend in KC. I feel better being closer to the childrens hospital right now as we make sure Ben is solidly on the road to recover. The kids and I will probably head back to Wichita Monday morning assuming all is well.
More updates soon.
Thursday, May 5, 2011
Very sick Benjamin
What a day. Benjamin started getting sick yesterday. He ran 102 fever and wouldn't move and slept. He barely drank. Lots of pushing to get him to drink, same again today. He was so weak he hadn't moved from the couch at all. He was sleeping again and next thing you know he's running screaming and grabbing his stomach yelling about flashlights and monsters and pain and needing meds. His heartrate was high. He was shaking so bad that he couldn't hold a cup. Immediately called the doc. They were concerned about appendix so had me rush him in. He couldn't walk so I had to carry him. He couldn't even stand on the scale so he had to be laid out across the baby scale to get a weight. Within minutes they had an IV going. Doc was checking him over and looked at his throat. When she swabbed it, it was literally bleeding. Ben has strep. Apparently in young children it presents with high fever, severe stomach pain, shakes, sometimes delusions, and tons of other weird things. Ben got 1000 mls of IV fluids, plus a massive shot of penicillin. He was so cold and shivering we had to keep covering him in blankets. We were there for hours. His fever crept back as we were leaving the doc. His pediatrician literally carried him out to the car. We are home and he was carried back to his place on the couch. He is hardly drinking again and sweating alot with the fever. We haven't seen a drop of pee in over 30 hrs. It's been decided that if he isn't better by morning he will be taken to the childrens hospital in KC and admitted. He's super sick and it's really scary.
As they were getting his IV going he was screaming at them "pretty pretty pretty please don't poke me" " pretty please stop" "I wish this was a dream" "I wish I didn't have to have 2 pokes" "I wish there was no such thing as sick"
The one that broke my heart the most was after they got him hooked up to the IV and he looked at it and said "I don't want to be like Eli". He's scared that because he has to have a tube that he will be super sick like Eli. Benjamin understand how much Eli suffers and that the quality of his life is hard. His pediatrician, nurse and I spent constant time at his side to help him not be scared.
He still doesn't have enough energy to sit up yet, so it took 2 people to get his shirt off...1 to sit him and hold him up and 1 to get it off. I will update more as I can. It's going to be a long night pushing fluids and keeping track of all of his vitals.
As they were getting his IV going he was screaming at them "pretty pretty pretty please don't poke me" " pretty please stop" "I wish this was a dream" "I wish I didn't have to have 2 pokes" "I wish there was no such thing as sick"
The one that broke my heart the most was after they got him hooked up to the IV and he looked at it and said "I don't want to be like Eli". He's scared that because he has to have a tube that he will be super sick like Eli. Benjamin understand how much Eli suffers and that the quality of his life is hard. His pediatrician, nurse and I spent constant time at his side to help him not be scared.
He still doesn't have enough energy to sit up yet, so it took 2 people to get his shirt off...1 to sit him and hold him up and 1 to get it off. I will update more as I can. It's going to be a long night pushing fluids and keeping track of all of his vitals.
Wednesday, May 4, 2011
Home from KC
We are back in Wichita.
Tuesday:
Eli had feeding therapy. He was a mess. I discussed with her his gagging issues and she wasn't quite understanding. Next thing I knew Eli had decided to demonstrate exactly what he does. She was like holy cow, and it made her nervous as she was grabbing him out of the high chair. She said that it is definitely very concerning.
Then we moved onto seating clinic. One of the vendors considered changing Eli's wheelchair that has been ordered but I wasn't happy with the changes he wanted to make. So the chair stays the same! It has been ordered and will be here in about 2 weeks! We also met with a doctor in charge of the rehab dept. He was very informative and it gives us a good idea of what next in that dept.
Then we headed to dermatology. She thinks she knows what the issue with the weird rash is and wants us to come in as soon as it comes back. It only shows up when he's sick so luckily it isn't there now! :)
He then headed to the audiologist. Hearing aids are all working well. They did a tympanogram and both eardrums were completely flat. Most likely because of fluid. He will be checked by his pediatrician on Friday.
Tuesday evening was Eli spending more time choking and gagging and struggling to keep his sats up.
Wednesday:
Eli had his ECHO 1st thing this morning. He was choking and gagging so much in the waiting room that people were getting concerned.
Then we moved on to Neurology. This was our 1st neuro appt at CMH. We were very impressed. He met with me for about 1 1/2 hrs. He agrees with the Mito. He says that he believes that Eli is functionally deaf. He believes that the mitochondria have caused road blocks in the neural pathways so they aren't allowing sound to go thru and be properly processed in the brain. He also agrees with the hypotonia. At this point he says it's hard to tell exactly what Eli is capable off. He wants us to continue all therapies and see what Eli can gain. He did say the longer it takes to gain it the less likely he will ever be to gain it. So really it's a waiting game. Which no parent wants to do. He is anxiously awaiting all of the paperwork from Atlanta. He also had his social worker get the referral process started for Eli to get major therapy, and also to get the family going with the Deaf school in KC.
Then we moved onto Pulmonology. We discusssed the choking alot. She believes that they hypotonia, weak swallow, oral aversion, and tracheal laryengal malaysia are all working against Eli to make it so hard for him to swallow. Everyone agrees that the problem is with his own secretions. First she is trying him on some meds to help lower the amount of secretions. We also discussed his sats still dropping with CPAP, so we will most likely be adding O2. We also discussed his issues with being in his car seat. Then in true Eli form on the drive him he dropped his sats to 71!!!
So none the less we are home now. The older 4 are super excited to see us.
Emily has finished all of her state assessments and did great on them! She also scored 105% on a spelling test!
Jace also got 105% on a spelling test, the 1st test where he has gotten everything including the challenge words!
Benjamin had his school program today and then came home from school and promptly fell asleep. My dad checked his temp and it was 102. He is super tired this evening with a bit of a temp and super sleepy. He says his legs hurt. Hoping he feels better in the morning.
Ariana is the princess as always. She has been busy hanging out at home and playing. Talking up a storm!
I am ok. Exhausted. I seem to have some major allergy issues going on which has caused a cough. No fun. Hopefully my allergy meds will kick in fast!
More updates soon!
Tuesday:
Eli had feeding therapy. He was a mess. I discussed with her his gagging issues and she wasn't quite understanding. Next thing I knew Eli had decided to demonstrate exactly what he does. She was like holy cow, and it made her nervous as she was grabbing him out of the high chair. She said that it is definitely very concerning.
Then we moved onto seating clinic. One of the vendors considered changing Eli's wheelchair that has been ordered but I wasn't happy with the changes he wanted to make. So the chair stays the same! It has been ordered and will be here in about 2 weeks! We also met with a doctor in charge of the rehab dept. He was very informative and it gives us a good idea of what next in that dept.
Then we headed to dermatology. She thinks she knows what the issue with the weird rash is and wants us to come in as soon as it comes back. It only shows up when he's sick so luckily it isn't there now! :)
He then headed to the audiologist. Hearing aids are all working well. They did a tympanogram and both eardrums were completely flat. Most likely because of fluid. He will be checked by his pediatrician on Friday.
Tuesday evening was Eli spending more time choking and gagging and struggling to keep his sats up.
Wednesday:
Eli had his ECHO 1st thing this morning. He was choking and gagging so much in the waiting room that people were getting concerned.
Then we moved on to Neurology. This was our 1st neuro appt at CMH. We were very impressed. He met with me for about 1 1/2 hrs. He agrees with the Mito. He says that he believes that Eli is functionally deaf. He believes that the mitochondria have caused road blocks in the neural pathways so they aren't allowing sound to go thru and be properly processed in the brain. He also agrees with the hypotonia. At this point he says it's hard to tell exactly what Eli is capable off. He wants us to continue all therapies and see what Eli can gain. He did say the longer it takes to gain it the less likely he will ever be to gain it. So really it's a waiting game. Which no parent wants to do. He is anxiously awaiting all of the paperwork from Atlanta. He also had his social worker get the referral process started for Eli to get major therapy, and also to get the family going with the Deaf school in KC.
Then we moved onto Pulmonology. We discusssed the choking alot. She believes that they hypotonia, weak swallow, oral aversion, and tracheal laryengal malaysia are all working against Eli to make it so hard for him to swallow. Everyone agrees that the problem is with his own secretions. First she is trying him on some meds to help lower the amount of secretions. We also discussed his sats still dropping with CPAP, so we will most likely be adding O2. We also discussed his issues with being in his car seat. Then in true Eli form on the drive him he dropped his sats to 71!!!
So none the less we are home now. The older 4 are super excited to see us.
Emily has finished all of her state assessments and did great on them! She also scored 105% on a spelling test!
Jace also got 105% on a spelling test, the 1st test where he has gotten everything including the challenge words!
Benjamin had his school program today and then came home from school and promptly fell asleep. My dad checked his temp and it was 102. He is super tired this evening with a bit of a temp and super sleepy. He says his legs hurt. Hoping he feels better in the morning.
Ariana is the princess as always. She has been busy hanging out at home and playing. Talking up a storm!
I am ok. Exhausted. I seem to have some major allergy issues going on which has caused a cough. No fun. Hopefully my allergy meds will kick in fast!
More updates soon!
Monday, May 2, 2011
Monday in overland park
It's been a long few days. Eli is struggling so much with his secretions. We are running out of ideas on what to do to help him. I'm really looking forward to these up coming appointments and hoping to get some answers. Last night he was trying to crawl up a stair and fell and his glasses broke and cut the side of his face next to his eye. He wasn't thrilled.
We started the morning with a doc appointment. Not much new info there. Then I went to the nursing agency and met with the team up here in overland park. Eli and I also got the dme transferred. Then we met bob for lunch at his work. Afterwards I picked up all the papers to get the kids enrolled for school next year. I'm so relieved to have a house up here and to be getting everything situated.
More info soon.
We started the morning with a doc appointment. Not much new info there. Then I went to the nursing agency and met with the team up here in overland park. Eli and I also got the dme transferred. Then we met bob for lunch at his work. Afterwards I picked up all the papers to get the kids enrolled for school next year. I'm so relieved to have a house up here and to be getting everything situated.
More info soon.
Saturday, April 30, 2011
Quick Updates
Eli and I are in KC. We got in Friday evening. Went to look at a house that works perfectly for us! We got back and put Eli to bed. We hung out with our friends visiting and came to bed around 11pm. Eli had been struggling with some coughing fits and gagging, but this isn't anything new unfortunately. Bob woke with Eli at 1:30am as his sat monitor was beeping. He went to pick Eli up and felt wet everywhere. Eli's GJ had come completely out. So our friends had a foley cath and we got that in. Then our friend, who is an RN was able to finally able to get a G tube in. We called CMH and they said to go to the ER. We were there for hours and they finally decided to not drop an NJ or do an IV and to just have us come back at 8am. So we drove back and forth. So we slept like 2 hrs. He did finally get his GJ replaced. Now this evening he's super fussy. His belly seems to be bothering him from all of the irritation and the barium.
Tonight and tomorrow we are hoping to rest. More updates hopefully tomorrow.
lots of doc appts this upcoming week at CMH. Hoping for some more answers.
Tonight and tomorrow we are hoping to rest. More updates hopefully tomorrow.
lots of doc appts this upcoming week at CMH. Hoping for some more answers.
Monday, April 25, 2011
Easter Weekend
I'm exhausted so a full blog update isn't happening tonight BUT here are a few pictures from Easter. I will get a full blog post up tomorrow!
I'm still trying to learn my new camera so red eye is horrible. I will have to figure that out!
I'm still trying to learn my new camera so red eye is horrible. I will have to figure that out!
Thursday, April 21, 2011
Behind on Updates
Again I'm a bit behind. Eli was in KC earlier in the week. He had his PH probe, as well as his kidney ultrasounds and urology appt. We are still waiting on the results of the PH probe. His kidney was still very large BUT looked slightly better than his last scan. His doc wants to redo in a few months. We will begin discussing his next testicular surgery.
Since coming home he's made a huge advancement. He has learned how to hold onto something and go to standing. He's such a big boy! Once he even figured out how to get back down to his bottom once. It makes me nervous as crap. Everytime I just keep thinking about his blood thinners. I sooo can't wait until he's off of them. He's still as exhausted as ever though. He is napping every few minutes, and every few crawls. I feel so bad for him.
He also had his next speech appointment. Finally we are all on the same page. The hearing aids don't appear to be making a difference. He isn't responding to more sounds, he isn't making any more sounds, and he still isn't responding to sign language at all. It has been decided to start Eli on a switch with pictures. We will be trying the basic "real life" pictures instead of stick figure drawings. If that doesn't work well for him we will switch over to actually pictures from OUR home. Right now his switch will be super big with a very large picture, since his eyes are so horrible. She will start him with 1, and then advance up to 2 or 3. I'm excited to try but also so nervous. What if it doesn't work? He is almost 17 months and has ZERO communication.
Today was/is my birthday. It has probably been the worst birthday of my life. I'm so glad that it's the end of the day and can't wait for it to be over. I will say that some special people in my life rallied together to help save the end of the day. Emily baked and decorated a cake; Paula, Eli's nurse, brought flowers, card, and a cake; and Sasha, the kids babysitter, brought a pamper mommy gift basket and a card! Thank you guys for helping end the day on a better note!
Since coming home he's made a huge advancement. He has learned how to hold onto something and go to standing. He's such a big boy! Once he even figured out how to get back down to his bottom once. It makes me nervous as crap. Everytime I just keep thinking about his blood thinners. I sooo can't wait until he's off of them. He's still as exhausted as ever though. He is napping every few minutes, and every few crawls. I feel so bad for him.
He also had his next speech appointment. Finally we are all on the same page. The hearing aids don't appear to be making a difference. He isn't responding to more sounds, he isn't making any more sounds, and he still isn't responding to sign language at all. It has been decided to start Eli on a switch with pictures. We will be trying the basic "real life" pictures instead of stick figure drawings. If that doesn't work well for him we will switch over to actually pictures from OUR home. Right now his switch will be super big with a very large picture, since his eyes are so horrible. She will start him with 1, and then advance up to 2 or 3. I'm excited to try but also so nervous. What if it doesn't work? He is almost 17 months and has ZERO communication.
Today was/is my birthday. It has probably been the worst birthday of my life. I'm so glad that it's the end of the day and can't wait for it to be over. I will say that some special people in my life rallied together to help save the end of the day. Emily baked and decorated a cake; Paula, Eli's nurse, brought flowers, card, and a cake; and Sasha, the kids babysitter, brought a pamper mommy gift basket and a card! Thank you guys for helping end the day on a better note!
Wednesday, April 13, 2011
Quick Evening Update
We tried doing his meds over 31 minutes, which equals 1ml/each minute. He still choked and gagged. looks like tomorrow we will try over 45 minutes and see if that helps any. He's miserable and oh so tired.
Here he is getting his meds (syringe push) and his breathing treatment.
Here he is getting his meds (syringe push) and his breathing treatment.
GI issues
Eli's GI system has never been cooperative. But seriously this is just getting ridiculous. When Eli was 1st born we were able to give his meds/feeds by mouth. Then he stopped tolerating so we switched to stomach. Then he again stopped tolerating so we switched to intestines. He has now been struggling with his J meds. We had tried to up his feeds and his body wouldn't handle it. He can handle 44ml/he but not 45ml/hr. He was handling his meds and flushes. Then a few weeks ago he started choking and gagging and not tolerating them. So the doctors had us change things around and experiment with different ways. His choking just keeps getting worse. The GI today has decided that Eli can't handle ANY bolus, not even 3ml's at a time. So now we are supposed to push all meds slowly over 1 hr. So basically load them all up into a 60ml syringe and slowly hand push over 1 hr.
We are running out of options to get medications into his body. It's so frustrating. I hate watching him get worse. It's devestating.
He is also struggling to bounce back from his Atlanta trip. He is constantly tired. He is sleeping 75% of the day if left to his own ways. During the times he is awake and playing he's back to taking frequent breaks and not having as good of control over his body and movements. I keep hoping that he just needs 1 more good night of sleep between him and the Atlanta trip and that he will wake up nice and refreshed in the morning. But so far that's not happening.
He had PT this morning and we were chatting about his development and she is getting concerned. She isn't the concerned type. She has always been laid back to the point sometimes of driving me insane. So that just concerns me even more. So much more information that we need. So many unanswered questions.
I wish life was cut and dry. I wish things were easy.
We are running out of options to get medications into his body. It's so frustrating. I hate watching him get worse. It's devestating.
He is also struggling to bounce back from his Atlanta trip. He is constantly tired. He is sleeping 75% of the day if left to his own ways. During the times he is awake and playing he's back to taking frequent breaks and not having as good of control over his body and movements. I keep hoping that he just needs 1 more good night of sleep between him and the Atlanta trip and that he will wake up nice and refreshed in the morning. But so far that's not happening.
He had PT this morning and we were chatting about his development and she is getting concerned. She isn't the concerned type. She has always been laid back to the point sometimes of driving me insane. So that just concerns me even more. So much more information that we need. So many unanswered questions.
I wish life was cut and dry. I wish things were easy.
Tuesday, April 12, 2011
Tuesday Update
Bob is in KC and getting situated. Yesterday was his 1st day or work and all went well. He's back at it today. M-F 8 to 5! Super nice. This evening after work he will also be looking at his 1st house. Hoping to find something by a move in the 1st of June.
It was asked why Bob didn't take Eli with him. First Eli doesn't yet having nursing there. Secondly Bob is living at a friends house in a small bedroom. Thirdly Bob is working, Eli can't just go to daycare. Fourth Bob can't just take off work everytime Eli has to go to a doctors appointment, even if Eli had nursing the laws do NOT allow them to drive the clients. Eli is best here at home with his nursing and his home. I will travel up for each of Eli's appointments right now. We didn't expect Bob to find a job so quickly.
We are all ok here. Missing Bob alot. Emilys foot is getting better, slowly but surely. Jace is doing pretty well. He got 100% on his last spelling test PLUS 1 of the bonus words! Super exciting! All the extra work this year is really paying off! Ben is doing decent. Yesterday he had some issues and took a bit to get him back on track. Ari is doing well. Busy as always. Ari and Eli have started bounding and he's really enjoying her company. She loves baby-ing him! :)
I will try and get some pictures up this weekend. The kids are all going to an easter egg hunt so I will take some pictures there!
It was asked why Bob didn't take Eli with him. First Eli doesn't yet having nursing there. Secondly Bob is living at a friends house in a small bedroom. Thirdly Bob is working, Eli can't just go to daycare. Fourth Bob can't just take off work everytime Eli has to go to a doctors appointment, even if Eli had nursing the laws do NOT allow them to drive the clients. Eli is best here at home with his nursing and his home. I will travel up for each of Eli's appointments right now. We didn't expect Bob to find a job so quickly.
We are all ok here. Missing Bob alot. Emilys foot is getting better, slowly but surely. Jace is doing pretty well. He got 100% on his last spelling test PLUS 1 of the bonus words! Super exciting! All the extra work this year is really paying off! Ben is doing decent. Yesterday he had some issues and took a bit to get him back on track. Ari is doing well. Busy as always. Ari and Eli have started bounding and he's really enjoying her company. She loves baby-ing him! :)
I will try and get some pictures up this weekend. The kids are all going to an easter egg hunt so I will take some pictures there!
Sunday, April 10, 2011
He's on the road
My household has gone from 7 to 6....atleast for the next 7 weeks or so. I'm so hoping that these 7 weeks fly by. There were alot of tears and I'm sure more will come.
The kids and I are ordering pizza and just having a quiet lazy evening. We will probably watch a movie.
Eli has been beyond exhausted today. His nurse finally had to wake him up at 10am as he wasn't showing any signs of waking. During the day he just keeps laying his head down. I'm hoping he's just trying to catch up from the Atlanta trip.
This is going to be one of my shortest blog posts ever as I'm just blah right now and trying to get my bearings. I miss my hubby!
The kids and I are ordering pizza and just having a quiet lazy evening. We will probably watch a movie.
Eli has been beyond exhausted today. His nurse finally had to wake him up at 10am as he wasn't showing any signs of waking. During the day he just keeps laying his head down. I'm hoping he's just trying to catch up from the Atlanta trip.
This is going to be one of my shortest blog posts ever as I'm just blah right now and trying to get my bearings. I miss my hubby!
Saturday, April 9, 2011
Home from Atlanta
We are home. Eli was pretty exhausted and sore the day after surgery. We spent the morning laying low, and met some friends at the Atlanta Zoo in the afternoon. Friday we packed and again laid low. We flew home last night.
The 1st flight from Atlanta to Denver had multiple issues, including wind and delays and stuff. We finally got to Denver. They loaded us on the plane at 8:15pm. Eli was asleep and his O2 dropped. We had to put him on his O2 but his sats wouldn't come up. He was in the 80's. Then we heard that the flight was delayed and we just had to sit on the plane. Bob went and told the crew that we wouldn't have enough O2 battery life because of all of the delays. The crew wasn't happy. Alot of conversation began. The crew wanted us to take a plane out the next day BUT refused to get our bags out from under the plane. I kept telling them that without our bags Eli would have to be hospitalized because I had virtually no medical equipment with us on board because it was a TINY plane. The other passengers on the airplane were in an uproar against the staff and ready to walk out and unload the plane themselves. Finally it was decided that Eli would use his O2 during take off and landing and the airplanes emergency canister during the flight. We finally got home around midnight. Eli had to be on high with the O2 the entire ride home to stay above the alarm setting of his O2 monitor. It was a long flight, atleast it felt like it.
Today he's been pretty tired. Played a bit, slept alot. His incision is looking much better, still sore and red, but better. Bob and I are beyond exhausted.
We now WAIT. They ran 26 tests and the results tak 6-8 weeks.
AND...now for the big announcement....
Bob has accepted a job in Kansas City. He moves to KC tomorrow and starts his new job Monday. The kids and I will join him after the school year ends. It's going to be a long 7 weeks without him here. We are super excited about the job, and about being a few minutes away from Eli's childrens hospital. We are also super excited that he was only on the hunt for a job less than 3 weeks! We are sooo blessed!
The entire family has spent alot of time talking about this and we all agree it's for the best. Bob will come back some weekends, and some we will go there.
Ari had alot of fun at a friends house this week and enjoyed having a "twin" sister for the week. The older 3 didn't have much change in their schedule at all. Emily sprained her ankle sleep walking and ended up having to go for xrays and a foot brace. Jace and Ben are their normal selves!
Today has been a day of family time before bob leaves tomorrow. The girls are the unhappiest about him leaving. Emily confides in Bob about everything and Ari has him wrapped around her little finger. It's all about Bob for her. It will be interesting to see how it goes. With our new phones luckily we will be able to do video chatting but still not the same.
More updates soon!
The 1st flight from Atlanta to Denver had multiple issues, including wind and delays and stuff. We finally got to Denver. They loaded us on the plane at 8:15pm. Eli was asleep and his O2 dropped. We had to put him on his O2 but his sats wouldn't come up. He was in the 80's. Then we heard that the flight was delayed and we just had to sit on the plane. Bob went and told the crew that we wouldn't have enough O2 battery life because of all of the delays. The crew wasn't happy. Alot of conversation began. The crew wanted us to take a plane out the next day BUT refused to get our bags out from under the plane. I kept telling them that without our bags Eli would have to be hospitalized because I had virtually no medical equipment with us on board because it was a TINY plane. The other passengers on the airplane were in an uproar against the staff and ready to walk out and unload the plane themselves. Finally it was decided that Eli would use his O2 during take off and landing and the airplanes emergency canister during the flight. We finally got home around midnight. Eli had to be on high with the O2 the entire ride home to stay above the alarm setting of his O2 monitor. It was a long flight, atleast it felt like it.
Today he's been pretty tired. Played a bit, slept alot. His incision is looking much better, still sore and red, but better. Bob and I are beyond exhausted.
We now WAIT. They ran 26 tests and the results tak 6-8 weeks.
AND...now for the big announcement....
Bob has accepted a job in Kansas City. He moves to KC tomorrow and starts his new job Monday. The kids and I will join him after the school year ends. It's going to be a long 7 weeks without him here. We are super excited about the job, and about being a few minutes away from Eli's childrens hospital. We are also super excited that he was only on the hunt for a job less than 3 weeks! We are sooo blessed!
The entire family has spent alot of time talking about this and we all agree it's for the best. Bob will come back some weekends, and some we will go there.
Ari had alot of fun at a friends house this week and enjoyed having a "twin" sister for the week. The older 3 didn't have much change in their schedule at all. Emily sprained her ankle sleep walking and ended up having to go for xrays and a foot brace. Jace and Ben are their normal selves!
Today has been a day of family time before bob leaves tomorrow. The girls are the unhappiest about him leaving. Emily confides in Bob about everything and Ari has him wrapped around her little finger. It's all about Bob for her. It will be interesting to see how it goes. With our new phones luckily we will be able to do video chatting but still not the same.
More updates soon!
Wednesday, April 6, 2011
Super fast update
Tiny is out of surgery and just got discharged. They did a spinal block and gasses along with alot of local. So no IV needed and no intubation as he want actually asleep. So his breathing stayed stable. Hes very bruised and sore. his incision is glued shut since hes allergic to adhesives. The hospital was great. Super impressed.
We are getting his pain meds filled and them back to RMH so he can sleep.
More updates tomorrow.
Atlanta
We got into atlanta late monday evening. Our flight was delayed out of denver due to storms in atlanta. It ended up being a 12 hour trip. Eli did really well and his oxygen stayed on the whole flight with no issues. We got to the ronald mcdonald house and crashed early.
Tuesday eli had his resting metabolic rate done. He did really well with it. There is a picture of it with this post. Then we headed to dr shoffners office. It was like meeting santa. We talked quite awhile with him. It was so nice talking to a doctor who actually understand what we are going thru. Plans were made to add some additional tests to the surgery as well as setting all the anesthesia protocol. Then eli had his pre surgery appointment at childrens at scottish rites. Again lots of talk on following strict mh and mito precautions with anesthesia.
After all of our appointments we went out to dinner with an old friend of mine and her family. It was so great to reconnect and spend the time together. We are at cheesecake factory and ended up talking until after 10 pm.
This morning we slept in and had a lazy breakfast. We are now at scottish rites waiting for vascular access, anesthesiologist, and the surgeon. We will update today as we know more.
As always thank you to everyone for all the love and support.
Tuesday eli had his resting metabolic rate done. He did really well with it. There is a picture of it with this post. Then we headed to dr shoffners office. It was like meeting santa. We talked quite awhile with him. It was so nice talking to a doctor who actually understand what we are going thru. Plans were made to add some additional tests to the surgery as well as setting all the anesthesia protocol. Then eli had his pre surgery appointment at childrens at scottish rites. Again lots of talk on following strict mh and mito precautions with anesthesia.
After all of our appointments we went out to dinner with an old friend of mine and her family. It was so great to reconnect and spend the time together. We are at cheesecake factory and ended up talking until after 10 pm.
This morning we slept in and had a lazy breakfast. We are now at scottish rites waiting for vascular access, anesthesiologist, and the surgeon. We will update today as we know more.
As always thank you to everyone for all the love and support.
Sunday, April 3, 2011
Flying High
"We're going on a trip on his favorite airplane with his airline approved infant concentrator, flying thru the skies with Little Eli. Climb aboard, get ready for answers, theres so much to learn, Little Eli. We're searching for a diagnosis, start the countdown, 5 metabolic testing, 4 specialist appt, 3 preadmissions testing, 2 spinal tap, 1 muscle biopsy. ZOOOOOM! Everyone to Atlanta, we are flying high, Little Eli. Come on, lets go, we need you now, Little Eli!!!" (sung to the toon of Little Einsteins)
It has been a whirlwind of a few days. We have been scrambling to get everything changed back over from driving to flying. We've had to get kids taken care of, schedules covered, food bought and ready, and all of our bags packed. Ari is staying the week with a good friend of mine and her 2 kiddos. A friend of mine is covering mornings before school and my parents have the afternoons/evenings/overnights.
We leave tomorrow morning. We have to be at the airport at 5am and our flight leaves at 7am. It's going to be an incredibly long day.
I'm numb right now. I can't believe that we are finally here. It's almost like a dream. I'm nervous as could be. I'm ready for this, just wanting it all to be over. I want the answers and I want to move past this!
I will try to update as much as possible.
It has been a whirlwind of a few days. We have been scrambling to get everything changed back over from driving to flying. We've had to get kids taken care of, schedules covered, food bought and ready, and all of our bags packed. Ari is staying the week with a good friend of mine and her 2 kiddos. A friend of mine is covering mornings before school and my parents have the afternoons/evenings/overnights.
We leave tomorrow morning. We have to be at the airport at 5am and our flight leaves at 7am. It's going to be an incredibly long day.
I'm numb right now. I can't believe that we are finally here. It's almost like a dream. I'm nervous as could be. I'm ready for this, just wanting it all to be over. I want the answers and I want to move past this!
I will try to update as much as possible.
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