Eli is still struggling. We went from the aspiration and requiring O2 to worse.
Eli met with his complex doc on Friday and we spent 3 1/2 hrs discussing everything. He gave us permission to go ahead and trial out full time O2 to see if we can keep his heart rate and respirations down. This is in hopes of avoiding a trach. Eli's normal O2 use is 1/2 liter while sleeping. 1/2 didn't work so we went up to 1. Then he started coming down with something or his aspiration getting worse. He's now on full time around 1 1/2 liters, has needed tons of suction, emergency breathing treatments, CPT, and is being kept upright at all times. His temp is up and so is his heart rate and respirations. He's barely coughing and it's pretty weak. His lungs are now sounding junky. I've already talked to his pulmonologist 3 times this morning. He's now having him on BiPAP with O2 and his breathing treatments run thru there. We have already had to cut back on his rescue treatments as they are making his heart rate even higher. CPT still. Increasing fluids. He again discussed the need to stop the robanol. He's not only concerned that it's raising his heart rate and increasing his respirations but now he's concerned that it's making his secretions too thick, and for a kiddo who doesn't have enough energy and muscle strength to cough, it's making it near impossible for him to cough it up.
We all will be meeting on Dec 15th, first thing to discuss all of this. We were confident that we were making progress on avoiding the trach, but after talking to his pulmonologist, we aren't so sure that we have alot of arguments left. He's worried and when Eli's doctors get that worried it really scares me.
The goal is still currently to keep Eli away from the hospital so our doc is calling here multiple times a day to keep checking in and changing nursing orders and sending med orders straight to the pharmacy to deliver here at home. Fingers crossed we can ride this whole thing out here. I am sooo thankful to have nursing in home 12 hrs a day 6 days a week. I have no idea how we would be getting thru this round without them.
More updates soon.
Tuesday, December 6, 2011
Thursday, December 1, 2011
Happy 2nd Birthday!!!
I don't have time to get a full blog post up but I did want to post the below pictures!
Wednesday, November 30, 2011
Updates W/ Pictures
What a week. We went to Wichita for thanksgiving and had a nice time. We spent time with family, did some basic christmas shopping, family photos along with Eli's 2 year pictures, eli's 2nd birthday party, and Bob and I even snuck in a date night.
Here are a few pictures from our weekend.
Then we got back to KC and Eli decided to remind us in a BIG way that we were back to the real world. Sunday evening his blood sugar dropped and he was super fussy. He was being put to bed and his feeding tube got ripped out. I was able to get a G tube in and off to the hospital Eli and I went. They immediately got an IV going with fluids and sugar. The ER doc begged IR to come in so that Eli wouldn't have to be admitted during winter sick season. He came in and got the tube replaced. He ran the contrast dye in to check placement and accidentally ran it into the G tube side ( Eli's stomach.) Eli choked and gagged. The next morning Eli woke up with a fever, high heartrate, super fast respirations and a yucky sound in his lungs. We had an appt with GI so he ordered chest xrays. He also had us meet with the nutritionist as Eli is again losing weight. Right now they are more worried about his fluid needs than his calories. He's already getting twice the protein needs and 30% more calories. He's getting a ton of fluid but still showing "dry" on all of his labs, even though he is constantly swollen and puffy. The GI is also concerned about Eli's fundo and is ordering an EGD to be done in january. Then we went for chest xrays. They showed ok, although his pulmnologist says it sometimes takes time for aspiration to show up on film. By the afternoon when his pulm called Eli's heartrate was 170 plus, and his respirations were between 45 and 60. Doc said to put him on O2 and attempt to ride it out at home. Eli couldn't handle a lower level O2 so is on double his norm. Everytime we've tried to wean him off his HR and resps shoot back up. He's super tired and has been resting alot.
We are holding well at home currently but concerned about the fact that we can't seem to get back off the O2.
Eli also met with the dermatologist over a rash on his back and neck and a different type of rash on his head and ear. The doc talked about what they were and what to do about them. So now Eli has 2 new meds to help with all of that.
Here are a few pics of Eli these last few days.
The rest of us are ok. Exhausted. The kids are back into the full swing of school and life. Bob is keeping up well with them and the house. I'm staying busy keeping up with Eli and all of these things going on.
We are still awaiting Eli's care conference. They've decided to invite a larger group of his docs and this takes a longer period of time. We get more nervous by the day, especially watching Eli struggle.
Tomorrow is a HUGE day for our family. Eli will be 2. We are so blessed to be at this point and we cherish each and every day.
Here is a pic of my little man taken this weekend by an amazing photographer!
I promise to get more updates up soon. The kids have all just walked in the door from school and I need to get some more done around here.
Here are a few pictures from our weekend.
Then we got back to KC and Eli decided to remind us in a BIG way that we were back to the real world. Sunday evening his blood sugar dropped and he was super fussy. He was being put to bed and his feeding tube got ripped out. I was able to get a G tube in and off to the hospital Eli and I went. They immediately got an IV going with fluids and sugar. The ER doc begged IR to come in so that Eli wouldn't have to be admitted during winter sick season. He came in and got the tube replaced. He ran the contrast dye in to check placement and accidentally ran it into the G tube side ( Eli's stomach.) Eli choked and gagged. The next morning Eli woke up with a fever, high heartrate, super fast respirations and a yucky sound in his lungs. We had an appt with GI so he ordered chest xrays. He also had us meet with the nutritionist as Eli is again losing weight. Right now they are more worried about his fluid needs than his calories. He's already getting twice the protein needs and 30% more calories. He's getting a ton of fluid but still showing "dry" on all of his labs, even though he is constantly swollen and puffy. The GI is also concerned about Eli's fundo and is ordering an EGD to be done in january. Then we went for chest xrays. They showed ok, although his pulmnologist says it sometimes takes time for aspiration to show up on film. By the afternoon when his pulm called Eli's heartrate was 170 plus, and his respirations were between 45 and 60. Doc said to put him on O2 and attempt to ride it out at home. Eli couldn't handle a lower level O2 so is on double his norm. Everytime we've tried to wean him off his HR and resps shoot back up. He's super tired and has been resting alot.
We are holding well at home currently but concerned about the fact that we can't seem to get back off the O2.
Eli also met with the dermatologist over a rash on his back and neck and a different type of rash on his head and ear. The doc talked about what they were and what to do about them. So now Eli has 2 new meds to help with all of that.
Here are a few pics of Eli these last few days.
The rest of us are ok. Exhausted. The kids are back into the full swing of school and life. Bob is keeping up well with them and the house. I'm staying busy keeping up with Eli and all of these things going on.
We are still awaiting Eli's care conference. They've decided to invite a larger group of his docs and this takes a longer period of time. We get more nervous by the day, especially watching Eli struggle.
Tomorrow is a HUGE day for our family. Eli will be 2. We are so blessed to be at this point and we cherish each and every day.
Here is a pic of my little man taken this weekend by an amazing photographer!
Tuesday, November 22, 2011
Words
Eli's rough stretch is still going strong. He had a rough night last night and beeped alot. This morning after being off his feeds for 1 1/2 hrs his blood sugar was 171. Which for Eli is ridiculously high. Endocrine called. We chatted. A one time sugar like that isn't to concerning but if it continues they want to begin further testing and his HGH (human growth hormone) will need to be re-evaluated.
His new bed also came today. It got here early so he was able to take his 1st morning nap on it. He did great! Stayed perfectly in the right position and slept well with only ONE O2 drop!!! We are looking forward to seeing how he does tonight.
His primary medically complex doc called me to chat. Never a good sign. He was concerned about the fact that he got a refill request for the robinul. He thought it had been stopped. I was told it wasn't going to stop until we had the care conference and had a clear plan in place. He said that they were working to get the care conference set up and that there was more to the trach than because of Eli's need for the robinul to be stopped. They want it for secretions, for his central mixed sleep apnea, and apparently because they are feeling the need to get a clear cut long term care plan in place for Eli as they still strongly believe that the underlying issue here is progression. From the sounds of his doctor they have all already made their choices and are just hoping to get Bob and I on board.
This worries me. It worries me that they are planning for and thinking ahead. I know that "ahead" is there but I try not to think about it, I sure don't plan for it....Okay that is maybe a lie...I sure don't plan for it out loud. Please don't crucify me for saying that, but it's true. As a mother of a kiddo like Eli I know what the future can hold, what it is predicted (guessed) to hold, and what the possibilities are. There aren't scenarios rushing thru my mind of Eli walking across the stage with his diploma in hand, walking down the aisle with his bride on his arm, or being present at my funeral.
In the top of my closet there is a box, the weight of it is immense. It is full of books, books given to us by the hospital, by social worker and doctors and nurses. Bob and I know they are there. They are for that moment, that time where life is uncertain, where there is no turning back, no fixing it. They are written for children, they are to help understand life and death and all that is involved. The thought of them terrifies me on a daily basis. As they and EVERYTHING else are always in the back of my mind.
What terrifies me even more is that the doctors are so willing to talk about and plan for the future. They say these things outloud. They say them to me and Bob, they write them on Eli's charts, they discuss them together with all of his care team. They try to keep us grounded, keep us knowing, understanding. They try to push us to think like them, to talk like them.
I can't do that. Each conversation takes another piece of me, it takes another piece of my little man. Words spoken can never be taken back. I don't want these talks, I don't want to be grounded. I want to wrap my arms around my little man and my family and float off into the clouds, flying freely all around, immune to "care plan meetings".
This is what I want. This is not what I will get. I will prepare myself. I will prepare the only way I know how. I will go to the meeting and listen, I will talk, I will argue and push, I will negotiate and try to compromise, I will beg and plead, I will present evidence and emotion, tears will fall freely...Ultimately I will not win, my little man will not win, in all honesty the doctors will not win either, Mito will win...After the meeting I will return home and do the only thing I know to do, crumple into my husbands arms, cuddling my little man until his head is soaked in my tears....I will talk to those families closest to us, those who understand what it's like to never speak these horrible thoughts outloud....
....and finally then I will make formula, pull meds, clean syringes, run spo2 monitors, apnea monitors, bipaps, O2, walkers, wheelchairs, OT, ST, PT, sign language, AFO's, SMO's, glasses, hearing aids, and books....Eli's favorite....books. I will read them, touching the pages, signing the pictures he sees, laughing with him, hiding behind them, and reading them over and over until they are so worn out that we have to re-buy them. After so many books the words from the meeting begin to fade and the lines begin to fade on if they were actually spoken or if they solely existed inside of my head....This will begin to help the pain again fade back to manageable...until that next dreadful meeting.
The cycle is torturous....for bob and i, for our older 4 children, for our families and friends, for Eli's doctors and nurses and therapists....But we push forward, just as Eli does in his day to day life. Eli is truly my hero. He is the strongest person I have ever encountered. My children are strong and amazing and supportive and so madly in love with their little brother. Our community is amazing and without them we wouldn't be able to make it thru each day. I hope one day I can be as strong for all of you out there as you all are for me, for my family, for my little man. Thank you.
His new bed also came today. It got here early so he was able to take his 1st morning nap on it. He did great! Stayed perfectly in the right position and slept well with only ONE O2 drop!!! We are looking forward to seeing how he does tonight.
His primary medically complex doc called me to chat. Never a good sign. He was concerned about the fact that he got a refill request for the robinul. He thought it had been stopped. I was told it wasn't going to stop until we had the care conference and had a clear plan in place. He said that they were working to get the care conference set up and that there was more to the trach than because of Eli's need for the robinul to be stopped. They want it for secretions, for his central mixed sleep apnea, and apparently because they are feeling the need to get a clear cut long term care plan in place for Eli as they still strongly believe that the underlying issue here is progression. From the sounds of his doctor they have all already made their choices and are just hoping to get Bob and I on board.
This worries me. It worries me that they are planning for and thinking ahead. I know that "ahead" is there but I try not to think about it, I sure don't plan for it....Okay that is maybe a lie...I sure don't plan for it out loud. Please don't crucify me for saying that, but it's true. As a mother of a kiddo like Eli I know what the future can hold, what it is predicted (guessed) to hold, and what the possibilities are. There aren't scenarios rushing thru my mind of Eli walking across the stage with his diploma in hand, walking down the aisle with his bride on his arm, or being present at my funeral.
In the top of my closet there is a box, the weight of it is immense. It is full of books, books given to us by the hospital, by social worker and doctors and nurses. Bob and I know they are there. They are for that moment, that time where life is uncertain, where there is no turning back, no fixing it. They are written for children, they are to help understand life and death and all that is involved. The thought of them terrifies me on a daily basis. As they and EVERYTHING else are always in the back of my mind.
What terrifies me even more is that the doctors are so willing to talk about and plan for the future. They say these things outloud. They say them to me and Bob, they write them on Eli's charts, they discuss them together with all of his care team. They try to keep us grounded, keep us knowing, understanding. They try to push us to think like them, to talk like them.
I can't do that. Each conversation takes another piece of me, it takes another piece of my little man. Words spoken can never be taken back. I don't want these talks, I don't want to be grounded. I want to wrap my arms around my little man and my family and float off into the clouds, flying freely all around, immune to "care plan meetings".
This is what I want. This is not what I will get. I will prepare myself. I will prepare the only way I know how. I will go to the meeting and listen, I will talk, I will argue and push, I will negotiate and try to compromise, I will beg and plead, I will present evidence and emotion, tears will fall freely...Ultimately I will not win, my little man will not win, in all honesty the doctors will not win either, Mito will win...After the meeting I will return home and do the only thing I know to do, crumple into my husbands arms, cuddling my little man until his head is soaked in my tears....I will talk to those families closest to us, those who understand what it's like to never speak these horrible thoughts outloud....
....and finally then I will make formula, pull meds, clean syringes, run spo2 monitors, apnea monitors, bipaps, O2, walkers, wheelchairs, OT, ST, PT, sign language, AFO's, SMO's, glasses, hearing aids, and books....Eli's favorite....books. I will read them, touching the pages, signing the pictures he sees, laughing with him, hiding behind them, and reading them over and over until they are so worn out that we have to re-buy them. After so many books the words from the meeting begin to fade and the lines begin to fade on if they were actually spoken or if they solely existed inside of my head....This will begin to help the pain again fade back to manageable...until that next dreadful meeting.
The cycle is torturous....for bob and i, for our older 4 children, for our families and friends, for Eli's doctors and nurses and therapists....But we push forward, just as Eli does in his day to day life. Eli is truly my hero. He is the strongest person I have ever encountered. My children are strong and amazing and supportive and so madly in love with their little brother. Our community is amazing and without them we wouldn't be able to make it thru each day. I hope one day I can be as strong for all of you out there as you all are for me, for my family, for my little man. Thank you.
Monday, November 21, 2011
Individual updates
I apologize for how far behind I am. So much has happened and it has been hard for me to actually sit down and put it all together.
Things won't really be in chronological order as it's to much to keep track of that way.
Eli ~ We have met with the pulmonologist, cardiologist, and the ENT. They are all agreeing that the trach is the way to go. The ENT also is considering tubes in his ears. His left ear drum isn't moving and it is a different color and the doc believes it has fluid trapped behind it. He will most likely do the tubes during Eli's surgery in January. He will also either do a full scope or the trach, depending on the final decision. We are still awaiting the care conference. Eli also had a rough week last week. He stopped peeing and pooping. He also had a seizure. The first day he lost 17 oz, then gained 20, then lost 18, then gained and lost some more. He ended up in the ER on friday after no pee and the seizure. Lots of labs and IV fluids. He finally started peeing but it still isn't back to normal. He also finally had a movement after 4 1/2 days but again still not back to normal. He's been incredibly tired and has had alot of temperature maintenance issues. We aren't sure what is going on with him and we are hoping that it regulates itself quickly, because the doctors also have no idea what is going on.
In other big Eli news he is getting his Comfy Lift Bed!!! Some amazing Mito moms got together and held a fundraiser for my little man. They had the entire bed, plus shipping, plus a spare cover paid for in right over 24 hrs!! We are so blessed and so damn lucky to have such an amazing support system in our lives! I can't imagine this journey without them.
Emily ~ Life is fun with a preteen. I don't know how many eye rolls, hair flips, sighs, and her ignoring us that I can deal with. She can be the sweetest most helpful amazing girl and the next minute she can be a holy terror. It's fun times all around. She's trying to stretch her independence and we allow her as much space as possible. She now has her ears double pierced, wears strange feathers in her hair, wears sleeveless gloves, is addicted to black and neon green, and listens to music I have never even heard off! It's interesting to say the least. We give her this freedom as long as she keeps up with her responsibilities. She's still maintaining all A's and is keeping up her extras. She is in all the advanced programs, as well as now helping out every Friday in a kindergarten classroom with some special needs kiddos. She's very active in student counsel still and enjoying that. She's loving choir, and has even been selected for a solo in the Christmas concert. She's loving violin, and is preparing for her first strings concert as well. In other words she stays super busy with school, activities, and driving her parents insane!
Jace ~ He's doing decent. His meds seem to go in waves on if they are working well or not. We aren't sure why that is. We will be meeting with both of his primary doctors next week to discuss how the meds are going. His new IEP is in place and we are hoping to start seeing some changes. He's struggling a bit with Speech as he gets older. His stubbornness is starting to shine thru and his ST has had some issues getting him to participate and work hard. He will start his state testing in December and with the new plans in place we are hoping to see some improvement. He's still enjoying school and we are so thankful for that. He is finding some new activities to enjoy around the house as well, one of those being some craft projects and music! He also loves his playtime with Eli. They play brotherly rough and tough, which normally involves flying thru the house on Eli's car (with his helmet on of course). Eli loves this time and so does Jace!
Benjamin ~ He's doing decent. This last week he had a weight loss BUT all in all he has still gained 4 1/2 lbs. Which for Ben is HUGE. He's still horribly underweight but a gain is a gain! We are still trying to find ways to get more water into him, that has definitely been a slower process. He's doing ok in school, but still struggling to stay focused sometimes. He's doing decent with his spelling words, but not so great getting his homework done. He has made a friend at school it seems and has come home a few times very excited about playing with him. He's spending alot of time playing the Wii still and is loving it! He has also figured out some of the games on our cell phones and enjoys that as well. He's been working on some basic self help goals, mainly showering and getting dressed in the morning. He's not there yet but doing well learning!
Ariana ~ She's absolutely loving school! She has made many friends and enjoys the activities and the interactions. She's learning some new things and is very happy with it all! When she's home she enjoys playing with her dolls and has been enjoying some of the Wii games. Her favorite game is JumpStart and she's learning so much with it. She loves her mornings with the big kids gone so she can rule the big TV and do her things. She's still girly as ever and that's always interesting for the rest of us. Her hair is now halfway down her back and she loves it! Always fun for the rest of us to get to maintain it though!
Bob and I ~ It's always so hard to say how we are. Bob has had some major GI flair ups and has even ended up in the ER. Changed around some of his meds and it's doing much better. I've had multiple migraines lately. We've been busy with the kids and the house. I've been working my way thru 5 quilts, so far I have 3 1/2 done. I'm also working on a crochetted blanket for Eli. I even read a book this month!
This weekend we are going to go to Wichita for thanksgiving! It will be nice to get away for a few days and visit with family and friends. We will also celebrate Eli's birthday as he will be 2 on December 1st. My how time flies! More updates this weekend!
Things won't really be in chronological order as it's to much to keep track of that way.
Eli ~ We have met with the pulmonologist, cardiologist, and the ENT. They are all agreeing that the trach is the way to go. The ENT also is considering tubes in his ears. His left ear drum isn't moving and it is a different color and the doc believes it has fluid trapped behind it. He will most likely do the tubes during Eli's surgery in January. He will also either do a full scope or the trach, depending on the final decision. We are still awaiting the care conference. Eli also had a rough week last week. He stopped peeing and pooping. He also had a seizure. The first day he lost 17 oz, then gained 20, then lost 18, then gained and lost some more. He ended up in the ER on friday after no pee and the seizure. Lots of labs and IV fluids. He finally started peeing but it still isn't back to normal. He also finally had a movement after 4 1/2 days but again still not back to normal. He's been incredibly tired and has had alot of temperature maintenance issues. We aren't sure what is going on with him and we are hoping that it regulates itself quickly, because the doctors also have no idea what is going on.
In other big Eli news he is getting his Comfy Lift Bed!!! Some amazing Mito moms got together and held a fundraiser for my little man. They had the entire bed, plus shipping, plus a spare cover paid for in right over 24 hrs!! We are so blessed and so damn lucky to have such an amazing support system in our lives! I can't imagine this journey without them.
Emily ~ Life is fun with a preteen. I don't know how many eye rolls, hair flips, sighs, and her ignoring us that I can deal with. She can be the sweetest most helpful amazing girl and the next minute she can be a holy terror. It's fun times all around. She's trying to stretch her independence and we allow her as much space as possible. She now has her ears double pierced, wears strange feathers in her hair, wears sleeveless gloves, is addicted to black and neon green, and listens to music I have never even heard off! It's interesting to say the least. We give her this freedom as long as she keeps up with her responsibilities. She's still maintaining all A's and is keeping up her extras. She is in all the advanced programs, as well as now helping out every Friday in a kindergarten classroom with some special needs kiddos. She's very active in student counsel still and enjoying that. She's loving choir, and has even been selected for a solo in the Christmas concert. She's loving violin, and is preparing for her first strings concert as well. In other words she stays super busy with school, activities, and driving her parents insane!
Jace ~ He's doing decent. His meds seem to go in waves on if they are working well or not. We aren't sure why that is. We will be meeting with both of his primary doctors next week to discuss how the meds are going. His new IEP is in place and we are hoping to start seeing some changes. He's struggling a bit with Speech as he gets older. His stubbornness is starting to shine thru and his ST has had some issues getting him to participate and work hard. He will start his state testing in December and with the new plans in place we are hoping to see some improvement. He's still enjoying school and we are so thankful for that. He is finding some new activities to enjoy around the house as well, one of those being some craft projects and music! He also loves his playtime with Eli. They play brotherly rough and tough, which normally involves flying thru the house on Eli's car (with his helmet on of course). Eli loves this time and so does Jace!
Benjamin ~ He's doing decent. This last week he had a weight loss BUT all in all he has still gained 4 1/2 lbs. Which for Ben is HUGE. He's still horribly underweight but a gain is a gain! We are still trying to find ways to get more water into him, that has definitely been a slower process. He's doing ok in school, but still struggling to stay focused sometimes. He's doing decent with his spelling words, but not so great getting his homework done. He has made a friend at school it seems and has come home a few times very excited about playing with him. He's spending alot of time playing the Wii still and is loving it! He has also figured out some of the games on our cell phones and enjoys that as well. He's been working on some basic self help goals, mainly showering and getting dressed in the morning. He's not there yet but doing well learning!
Ariana ~ She's absolutely loving school! She has made many friends and enjoys the activities and the interactions. She's learning some new things and is very happy with it all! When she's home she enjoys playing with her dolls and has been enjoying some of the Wii games. Her favorite game is JumpStart and she's learning so much with it. She loves her mornings with the big kids gone so she can rule the big TV and do her things. She's still girly as ever and that's always interesting for the rest of us. Her hair is now halfway down her back and she loves it! Always fun for the rest of us to get to maintain it though!
Bob and I ~ It's always so hard to say how we are. Bob has had some major GI flair ups and has even ended up in the ER. Changed around some of his meds and it's doing much better. I've had multiple migraines lately. We've been busy with the kids and the house. I've been working my way thru 5 quilts, so far I have 3 1/2 done. I'm also working on a crochetted blanket for Eli. I even read a book this month!
This weekend we are going to go to Wichita for thanksgiving! It will be nice to get away for a few days and visit with family and friends. We will also celebrate Eli's birthday as he will be 2 on December 1st. My how time flies! More updates this weekend!
Tuesday, November 8, 2011
Cardiologist
Last night was rough. Eli's apnea monitor alarmed 28 times for high heart rate. Today he had his appt with the cardiologist. They did his ECHO and then we met with the cardiologist. The ECHO looked good. The clot is definitely gone and the calcified leason is mostly gone as well. Now it's simply scar tissue and a thickening of the heart wall there. The heartrate was again high.
The cardiologist agress that the robanol is causing heart issues. He wants him off of it. He also believes that Eli's trouble with secretions is causing a small amount of respiratory distress and causing an increase in heart rate as well. He says meds to lower the heart rate are going to have to many side effects for a kiddo like Eli. He's also very concerned about Eli's risk of developing cardiac myopathy. He says that basically each heart is born with so many beats. Eli is plowing thru his heartbeats at a ridiculously fast rate. Long term this is obviously a major issue and by long term he means we will begin seeing effects from it fairly soon. He agrees that a trach is the best option. He will obviously continue to follow Eli during the whole next stage of the process and continue to closely monitor his heart thru all of these changes.
So it seems as though we are basically out of choices. It's rough.
We are working thru all of our thoughts and feeling and fears.
Tonight is Emily's choir conference so we are going to try to go and simply enjoy that and try not to think about it all.
More updates tomorrow.
The cardiologist agress that the robanol is causing heart issues. He wants him off of it. He also believes that Eli's trouble with secretions is causing a small amount of respiratory distress and causing an increase in heart rate as well. He says meds to lower the heart rate are going to have to many side effects for a kiddo like Eli. He's also very concerned about Eli's risk of developing cardiac myopathy. He says that basically each heart is born with so many beats. Eli is plowing thru his heartbeats at a ridiculously fast rate. Long term this is obviously a major issue and by long term he means we will begin seeing effects from it fairly soon. He agrees that a trach is the best option. He will obviously continue to follow Eli during the whole next stage of the process and continue to closely monitor his heart thru all of these changes.
So it seems as though we are basically out of choices. It's rough.
We are working thru all of our thoughts and feeling and fears.
Tonight is Emily's choir conference so we are going to try to go and simply enjoy that and try not to think about it all.
More updates tomorrow.
Monday, November 7, 2011
Ortho and quick updates
We had a very quiet weekend. Saturday evening Bob and I went out for dinner, shopping and a movie. It was sooo nice to get 6 hrs out alone. Very needed after these last few weeks.
Sunday we all laid incredibly low and didn't do a darned thing.
Today we have a new nurse shadowing. This morning was slow letting her get used to Eli. Eli had therapy with his speech path plus his sign language teacher. His IPAD was approved!!! Plus all of the extras that were requested. We are super excited!
Then this afternoon he had his appt with his new orthopedic surgeon. She says that when his muscles were growing in utero and as a baby they weren't able to grow properly which made his bones distorted. She says that ultimately he needs surgery. What she will do is cut both femurs in half and then rotate them to the proper place. Then they will be anchored down with metal plates and rods. Then he will have leg casts while they heal. She said that right now she wants to wait until he's a bit stronger. She's concerned that doing it now will cause way to far of a setback muscle wise. We are waiting to hear back on his care meeting for the trach. hoping to hear something tomorrow.
This evening Ari fell and got hurt. She was going over the baby gate and slipped and fell backwards hitting the back of her head on the tile floor. She has a massive knot and cried for a good 45 minutes. Alot of ice. No signs of concussion or anything else. We will wake her multiple times during the night, but I have no doubt that she will still have quite the headache come morning.
Tomorrow we meet with Eli's cardiologist. I'm anxiously awaiting this appt. This is the first of many times the trach will be seriously discussed, and his answers tomorrow will almost make our decision for us. I'm so damn nervous.
I will update tomorrow as soon as I know more!
Sunday we all laid incredibly low and didn't do a darned thing.
Today we have a new nurse shadowing. This morning was slow letting her get used to Eli. Eli had therapy with his speech path plus his sign language teacher. His IPAD was approved!!! Plus all of the extras that were requested. We are super excited!
Then this afternoon he had his appt with his new orthopedic surgeon. She says that when his muscles were growing in utero and as a baby they weren't able to grow properly which made his bones distorted. She says that ultimately he needs surgery. What she will do is cut both femurs in half and then rotate them to the proper place. Then they will be anchored down with metal plates and rods. Then he will have leg casts while they heal. She said that right now she wants to wait until he's a bit stronger. She's concerned that doing it now will cause way to far of a setback muscle wise. We are waiting to hear back on his care meeting for the trach. hoping to hear something tomorrow.
This evening Ari fell and got hurt. She was going over the baby gate and slipped and fell backwards hitting the back of her head on the tile floor. She has a massive knot and cried for a good 45 minutes. Alot of ice. No signs of concussion or anything else. We will wake her multiple times during the night, but I have no doubt that she will still have quite the headache come morning.
Tomorrow we meet with Eli's cardiologist. I'm anxiously awaiting this appt. This is the first of many times the trach will be seriously discussed, and his answers tomorrow will almost make our decision for us. I'm so damn nervous.
I will update tomorrow as soon as I know more!
Friday, November 4, 2011
Phone call with pulmonology
Just when I think I'm as emotionally drained as is imaginably possible I'm hit again.
We have been working closely with Eli's docs to figure out the secretion issues and the medication issues. The robanol is definitely helping with secretions but it's also causing issues with Eli's heart. Ultimately Eli needs to be taken off the robanol. Eli's pulmonologist called me today and chatted with me for almost 20 minutes. He believes that with Eli's diagnosis of Mito(and the progression involved), plus his esophageal motility, plus the hypotonia and the respiratory issues that we are looking at the need for a long term permanent fix. He told me he feels a very strong connection to Eli and our family and that he really wanted to talk to me in person but he believes we are hitting the point where we need to have a care team meeting and discuss a trach. He believes that this is going to be a more permanent solution for Eli that helps protect his heart. I began crying immediately and the compassion in his voice was overwhelming. He really really cares about what is best for Eli and for our family. He is calling together eli's primary docs as well as his geneticist and cardiologist and wants to sit down with us and go over what's going to be best.
I'm terrified. This is something we have been warned could be discussed some day but we didn't expect it this soon. We are going to obviously be questioning everything and push on what other less invasive options are available. In the mean time his pulmonologist is calling all of the docs and is going to check in with me on monday to get this all set up.
I will update more as we know more.
We have been working closely with Eli's docs to figure out the secretion issues and the medication issues. The robanol is definitely helping with secretions but it's also causing issues with Eli's heart. Ultimately Eli needs to be taken off the robanol. Eli's pulmonologist called me today and chatted with me for almost 20 minutes. He believes that with Eli's diagnosis of Mito(and the progression involved), plus his esophageal motility, plus the hypotonia and the respiratory issues that we are looking at the need for a long term permanent fix. He told me he feels a very strong connection to Eli and our family and that he really wanted to talk to me in person but he believes we are hitting the point where we need to have a care team meeting and discuss a trach. He believes that this is going to be a more permanent solution for Eli that helps protect his heart. I began crying immediately and the compassion in his voice was overwhelming. He really really cares about what is best for Eli and for our family. He is calling together eli's primary docs as well as his geneticist and cardiologist and wants to sit down with us and go over what's going to be best.
I'm terrified. This is something we have been warned could be discussed some day but we didn't expect it this soon. We are going to obviously be questioning everything and push on what other less invasive options are available. In the mean time his pulmonologist is calling all of the docs and is going to check in with me on monday to get this all set up.
I will update more as we know more.
Thursday, November 3, 2011
Burden of Life
Wow. I don't even know where to start. It's been a rough week for me.
The weight of responsibility of raising a kiddo like eli has hit me hard this week. I'm exhausted. Every moment of every day I have to be ready to give every drop of his medical history in order with ALL of the correct info, all of his surgeries and procedures, every name and phone number of every doctor(35)/nurse(2 in home and over 40 in office)and/therapist(8), every medication with concentration, dosage and time, and every single drop of info about blood sugar, swelling, seizures, sleep, vital and EVERYTHING else. If I miss ONE single fact it can be my childs life. To some this may sound like overkill but it's not. This is life with a complex kiddo like Eli. I have to maintain PERFECTION. So far I've not missed a single detail. I've always remembered every single thing at the exact moment that I needed it. I've always been able to have it all right there.
That being said though I'm TIRED. Beyond tired. Exhausted. My brain and body are nearing the end of what they can handle. I have maintained perfection for 23 months and I'm soooo scared I can't continue to do it much longer.
I have lost every drop of me and I have become an extension of Eli. I am Eli. Every doctors appt, every therapy appt, every progress or setback...the doctors and nurses praise me for how good I'm doing, they remind me that I'm the reason that Eli is still alive. I wholeheartedly believe that BUT it's such a huge burden to carry. It's lonely and exhausting and painful. oh so fucking painful.
For some of you I know this post won't make much sense, for some of you I'm sure you'll be nodding your head with tears in your eyes. I totally get that. I would have never understood until I'm living this life.
I sit here and look at Eli and tears automatically come to my eyes, my breath catches, my heart skips a beat. This happens virtually every time I look at him. The bond I have with him is amazing and I'm sooo very thankful for that. The problem is at the same time I almost find it hard to breath because the weight of it all comes crashing down upon me in waves. Sometimes my heart hurts so bad I can hardly stand to look at him and I briefly have to look away.
No family should have to live like this. It's not just rough on me. It's hard on Bob and the oldest 4 as well, just in a different way. Eli is my primary responsibility, leaving Bob primary caregiver for the oldest 4. That's not to say that I'm not involved in their care as well, because I am. But primary doesn't fall on me. It can't.
The top of my blog says "We've got what it takes, but it will take everything we've got." This is so true. I know deep down in my heart that we will make it thru this, but I'm so scared to know what will be left of me. I don't know who I am anymore outside of Eli. I don't know what to do with real "non-medical" life anymore. Life IS medical, beeps, medications, abbreviations, diagnosis, schedules, vitals, and dme's.
Life is keeping my baby alive.
The weight of responsibility of raising a kiddo like eli has hit me hard this week. I'm exhausted. Every moment of every day I have to be ready to give every drop of his medical history in order with ALL of the correct info, all of his surgeries and procedures, every name and phone number of every doctor(35)/nurse(2 in home and over 40 in office)and/therapist(8), every medication with concentration, dosage and time, and every single drop of info about blood sugar, swelling, seizures, sleep, vital and EVERYTHING else. If I miss ONE single fact it can be my childs life. To some this may sound like overkill but it's not. This is life with a complex kiddo like Eli. I have to maintain PERFECTION. So far I've not missed a single detail. I've always remembered every single thing at the exact moment that I needed it. I've always been able to have it all right there.
That being said though I'm TIRED. Beyond tired. Exhausted. My brain and body are nearing the end of what they can handle. I have maintained perfection for 23 months and I'm soooo scared I can't continue to do it much longer.
I have lost every drop of me and I have become an extension of Eli. I am Eli. Every doctors appt, every therapy appt, every progress or setback...the doctors and nurses praise me for how good I'm doing, they remind me that I'm the reason that Eli is still alive. I wholeheartedly believe that BUT it's such a huge burden to carry. It's lonely and exhausting and painful. oh so fucking painful.
For some of you I know this post won't make much sense, for some of you I'm sure you'll be nodding your head with tears in your eyes. I totally get that. I would have never understood until I'm living this life.
I sit here and look at Eli and tears automatically come to my eyes, my breath catches, my heart skips a beat. This happens virtually every time I look at him. The bond I have with him is amazing and I'm sooo very thankful for that. The problem is at the same time I almost find it hard to breath because the weight of it all comes crashing down upon me in waves. Sometimes my heart hurts so bad I can hardly stand to look at him and I briefly have to look away.
No family should have to live like this. It's not just rough on me. It's hard on Bob and the oldest 4 as well, just in a different way. Eli is my primary responsibility, leaving Bob primary caregiver for the oldest 4. That's not to say that I'm not involved in their care as well, because I am. But primary doesn't fall on me. It can't.
The top of my blog says "We've got what it takes, but it will take everything we've got." This is so true. I know deep down in my heart that we will make it thru this, but I'm so scared to know what will be left of me. I don't know who I am anymore outside of Eli. I don't know what to do with real "non-medical" life anymore. Life IS medical, beeps, medications, abbreviations, diagnosis, schedules, vitals, and dme's.
Life is keeping my baby alive.
Wednesday, October 26, 2011
Feeding therapy
It was a fairly slow end of the week last week. Ben had a field trip to the pumpkin patch and loved it.
On Sunday all 7 of us went to the pumpkin patch. It was a HUGE patch with over 50 activities. The kids had so much fun. Eli got to go on a barrel train ride, a horse tire swing, and played in the corn pit. He also got to pick out his very own pumpkin! It got warmer than expected and the day really wore him out alot. He spent the rest of the evening sleeping.
Monday was a very slow quiet day!
Tuesday Jace had his appt with the developmental/behavioral psychologist. It was just alot of basic information and discussions. She is getting to know Jace and then will work to formulate a plan that will be the best. Currently she will be focusing on his physical aggression and his eating issues.
Last night Eli had what appeared to be a 3 to 5 min seizure with O2 sat drop. Makes for a fun start to the evening. His neuro has been called and deciding if they want to make any changes.
Benjamin also had his appt with the feeding team today. He did pretty well. They said he is definitely malnourished and are wanting to start him on vitamins as well as a few other things. The OT also wants to get a full sensory diet started for Ben. They will be working in conjunction with his doctor and psychologist. We are hoping to find a good solution for Ben when it comes to nutrition. He is so darned tiny.
Tonight is our ASL class. It's fall parties tonight for us and for the kids. They are super excited to get to wear their costumes. We have made cheesecake bites for our class. I can't wait to try them.
Tomorrow is Emily's 11th birthday. Since there is no school tomorrow she took her treats today. This weekend my parents will be in town to celebrate her birthday!
Today is Ben's Parent/Teacher conference, and tomorrow is Emily, Jace, and Ari! So nobody has school for the rest of the week. Hoping to get some housework and pumpkin carving done! Pictures and updates soon.
On Sunday all 7 of us went to the pumpkin patch. It was a HUGE patch with over 50 activities. The kids had so much fun. Eli got to go on a barrel train ride, a horse tire swing, and played in the corn pit. He also got to pick out his very own pumpkin! It got warmer than expected and the day really wore him out alot. He spent the rest of the evening sleeping.
Monday was a very slow quiet day!
Tuesday Jace had his appt with the developmental/behavioral psychologist. It was just alot of basic information and discussions. She is getting to know Jace and then will work to formulate a plan that will be the best. Currently she will be focusing on his physical aggression and his eating issues.
Last night Eli had what appeared to be a 3 to 5 min seizure with O2 sat drop. Makes for a fun start to the evening. His neuro has been called and deciding if they want to make any changes.
Benjamin also had his appt with the feeding team today. He did pretty well. They said he is definitely malnourished and are wanting to start him on vitamins as well as a few other things. The OT also wants to get a full sensory diet started for Ben. They will be working in conjunction with his doctor and psychologist. We are hoping to find a good solution for Ben when it comes to nutrition. He is so darned tiny.
Tonight is our ASL class. It's fall parties tonight for us and for the kids. They are super excited to get to wear their costumes. We have made cheesecake bites for our class. I can't wait to try them.
Tomorrow is Emily's 11th birthday. Since there is no school tomorrow she took her treats today. This weekend my parents will be in town to celebrate her birthday!
Today is Ben's Parent/Teacher conference, and tomorrow is Emily, Jace, and Ari! So nobody has school for the rest of the week. Hoping to get some housework and pumpkin carving done! Pictures and updates soon.
Thursday, October 20, 2011
Wants
Tuesday afternoon Eli's respiratory therapist came and downloaded his apnea monitor and O2 sat monitor information. She was going to fax it to the pulmnologist /sleep medicine doctor, Dr B, before we saw him Wednesday morning. She called me saying that it was over 100 pages and that she was going to drop it off for us to hand carry to the doc. I looked over it and was shocked by what all I saw.
Wednesday we had Dr B first thing. He went over the report and initially wondered if some of the high heart rate issues were because of a malfunction, some of the HR's all the way up to 370. There were also some low heart rates and quite a few apnea episodes. He got to going over the entire report as well as Eli's meds and was concerned. Eli is way maxed out on his robanol and that can cause high heart rate. With Eli's heart problems they are taking it seriously. He is calling his cardiologist and they will be doing an EKG and Echo. I received a call today from Eli's respiratory therapist saying that she met with the pulmonologist and they went thru all of the printouts AGAIN and that they do NOT believe it's a problem with the machine. I've heard them say that multiple times now but I keep hoping that it's a malfunction. But after hrs of pouring over it they are sure it's not. He also is concerned about the amount of issues he's having with his mask. He sent orders to the RT to work on refitting that. He has also ordered a special bed that will keep Eli elevated and on his back. We also discussed the ferratin / iron levels and he has decided with as much problems as Eli is having with his legs and arms that it would be a good idea to start iron. We are again hitting another crossroads. Lungs are a primary function obviously and we are stuck. The medication that is helping to protect his lungs (and is working pretty well mind you) is now causing another primary organ (the heart) to suffer. I have no idea what is going to happen and I'm left simply having to trust the doctors that they know what the right choice is.
Then come afternoon time we met with Eli's new optometrist. His eyes have again gotten worse. The optic nerve and retina still look good, but the eye sight has changed. What the doc was concerned could happen, has. Eli's right eye is barely functioning and his left eye is trying to do all of the work to make up for it. He has ordered new glasses and has also decided to begin patching. Eli will start with patching 2 hrs a day and we can work up from there. They will continue to monitor his eyes closely for any new changes.
After that we ran by and picked up his new SMO's. These are braces that cover his feet and right above his ankles. They are hoping that we can work up to the point where he wears them all the time he's awake, except for when he's upright working on PT he will continue to wear his AFO's. The AFO's are the ones that cover his foot, ankle, and leg to right under his knee. Hopefully we will begin to see some changes with these.
He's worked a bit more with his walker and is slowly getting the hang of how it works. He just doesn't have the strength or endurance to keep up with it.
He's been incredibly exhausted today and is already back down for another nap.
We are here. Scared and exhausted. This isn't our first time to have unwanted side effects from a medication BUT it is our 1st time to have 2 primary systems effected by the choices that we have to make on this one. I trust Eli's doctors, mostly, but when it comes to something like this it's hard to trust anyone, hard to make a choice if we compromise the lungs or the heart. I don't want to compromise anything. I want a magic fix. I want it now.
I WANT A CURE.
Wednesday we had Dr B first thing. He went over the report and initially wondered if some of the high heart rate issues were because of a malfunction, some of the HR's all the way up to 370. There were also some low heart rates and quite a few apnea episodes. He got to going over the entire report as well as Eli's meds and was concerned. Eli is way maxed out on his robanol and that can cause high heart rate. With Eli's heart problems they are taking it seriously. He is calling his cardiologist and they will be doing an EKG and Echo. I received a call today from Eli's respiratory therapist saying that she met with the pulmonologist and they went thru all of the printouts AGAIN and that they do NOT believe it's a problem with the machine. I've heard them say that multiple times now but I keep hoping that it's a malfunction. But after hrs of pouring over it they are sure it's not. He also is concerned about the amount of issues he's having with his mask. He sent orders to the RT to work on refitting that. He has also ordered a special bed that will keep Eli elevated and on his back. We also discussed the ferratin / iron levels and he has decided with as much problems as Eli is having with his legs and arms that it would be a good idea to start iron. We are again hitting another crossroads. Lungs are a primary function obviously and we are stuck. The medication that is helping to protect his lungs (and is working pretty well mind you) is now causing another primary organ (the heart) to suffer. I have no idea what is going to happen and I'm left simply having to trust the doctors that they know what the right choice is.
Then come afternoon time we met with Eli's new optometrist. His eyes have again gotten worse. The optic nerve and retina still look good, but the eye sight has changed. What the doc was concerned could happen, has. Eli's right eye is barely functioning and his left eye is trying to do all of the work to make up for it. He has ordered new glasses and has also decided to begin patching. Eli will start with patching 2 hrs a day and we can work up from there. They will continue to monitor his eyes closely for any new changes.
After that we ran by and picked up his new SMO's. These are braces that cover his feet and right above his ankles. They are hoping that we can work up to the point where he wears them all the time he's awake, except for when he's upright working on PT he will continue to wear his AFO's. The AFO's are the ones that cover his foot, ankle, and leg to right under his knee. Hopefully we will begin to see some changes with these.
He's worked a bit more with his walker and is slowly getting the hang of how it works. He just doesn't have the strength or endurance to keep up with it.
He's been incredibly exhausted today and is already back down for another nap.
We are here. Scared and exhausted. This isn't our first time to have unwanted side effects from a medication BUT it is our 1st time to have 2 primary systems effected by the choices that we have to make on this one. I trust Eli's doctors, mostly, but when it comes to something like this it's hard to trust anyone, hard to make a choice if we compromise the lungs or the heart. I don't want to compromise anything. I want a magic fix. I want it now.
I WANT A CURE.
Monday, October 17, 2011
Therapy changes
Eli had a fairly quite morning. Bob and I got some grocery shopping done and a few errands. This afternoon Eli had therapy. It was PT, ST, and ASL. We had a long talk. Alot of discussion about his legs and walking abilities. Nobody is sure what the best course is. His in home leads will be changing. His ASL therapist will become the lead. Then his ST will come maybe twice a month to work on his IPAD for communication. Then he will have OT and PT in home. We have been going to 2 different therapy centers to get all of his therapies as well as working with in home. It has gotten to be to much. Eli struggles with that much and so do we. We have decided to stop 1 therapy center where he was getting all 3 therapies and switch to simply in home. He will still receive intensive PT and water therapy at 1 outpatient facility. His in home PT agrees that some of the physical issues are getting worse BUT she believes if we weren't doing the intense therapies and interventions that it would be considerably worse than it already is. That's rough to hear. She worked with him for a bit today in his hip helpers and in his AFO's and he really struggled with exhaustion. They wear him out so quickly. He did do a bit of work on the stairs and did well with that.
It has been a bit of a struggle to decided to lessen Eli's therapies. There is a slight guilt over not giving him every single thing out there. On the other hand he is exhausted and it puts an added strain on his body. We are trying to find the balance of giving Eli what he needs, but also allowing him to be a kid and have a large amount of down time. Eli is already sleeping so much, and already needing so much more energy. He sleeps 12 hrs a night and around 4 hrs a day. For a total of 16hrs a day. Mind you there are only 24 hrs in a day, meaning he is only awake for about 8hrs max. So it's hard to find time to fit in all of the other activities. We are hoping that we are making the best choices. We have chatted with so many of his docs and therapists and they all agree. It's not giving up, but it's allowing Eli a break. It's realizing that no matter how many therapy opportunities we provide he simply won't catch up. He won't reach all of the milestones that we have been pushing him so hard to reach. I'm sure to some that this sounds like giving up, but I promise you it's not. It's about loving our little man unconditionally and allowing him to be simply Eli. We are hoping this is the right choice, because we don't see many other options and we truly believe this is for the best.
Emily came home today with big news today! They had a school spirit assembly and she won an award. She made principal's honor roll. She was super excited and so are we!
Tomorrow we have Eli's ASL tutor who comes once a week to teach us ASL. We enjoy this time and learn a lot.
It has been a bit of a struggle to decided to lessen Eli's therapies. There is a slight guilt over not giving him every single thing out there. On the other hand he is exhausted and it puts an added strain on his body. We are trying to find the balance of giving Eli what he needs, but also allowing him to be a kid and have a large amount of down time. Eli is already sleeping so much, and already needing so much more energy. He sleeps 12 hrs a night and around 4 hrs a day. For a total of 16hrs a day. Mind you there are only 24 hrs in a day, meaning he is only awake for about 8hrs max. So it's hard to find time to fit in all of the other activities. We are hoping that we are making the best choices. We have chatted with so many of his docs and therapists and they all agree. It's not giving up, but it's allowing Eli a break. It's realizing that no matter how many therapy opportunities we provide he simply won't catch up. He won't reach all of the milestones that we have been pushing him so hard to reach. I'm sure to some that this sounds like giving up, but I promise you it's not. It's about loving our little man unconditionally and allowing him to be simply Eli. We are hoping this is the right choice, because we don't see many other options and we truly believe this is for the best.
Emily came home today with big news today! They had a school spirit assembly and she won an award. She made principal's honor roll. She was super excited and so are we!
Tomorrow we have Eli's ASL tutor who comes once a week to teach us ASL. We enjoy this time and learn a lot.
Sunday, October 16, 2011
Something's up with Tiny
I'm constantly reminded of the pain and devastation and heartache and instability of Mito. My little man reminds me, as well as the other little Mito warriors in our group. It's so hard.
My tiny man has had a rougher few days. He's had his cough, and has had some blood sugar instability. Today he ran a fever again (highest we've seen for a few weeks) as well as had some blood sugar drops. He has a bright red rash on his cheeks and has been very sleepy. Yesterday he had a lot of drainage, but today that is gone. Some upper respiratory crackles but nothing down in his lungs. Not sure which way it's going to go but it's definitely been getting progressively worse over the last few weeks. This week we meet with his pulmonologist /sleep study doctor and I'm anxious for that. I'm hoping we can find some relief for the restless leg syndrome and for the breathing issues. His Mito doc AND his endocrinologist don't believe that the growth hormone is causing the increase in issues, BUT his pulmonologist and pediatrician believe that it is. His Mito doc doesn't sugar coat anything and he simply feels it the progression of the disease. I hear docs say that but I struggle so very much to believe it...to grasp it. I'm tired of hearing it. I can't give up and I wish they wouldn't give up. Any way you look at it, this is a major appt and we are ready to get some solutions for the sleeping issues. It's so hard for a kiddo who already has energy issues to struggle so deeply with sleep, it makes the energy ten-folds worse.
We also will be making some phone calls this week to change around a few meds as well as to rework his feeds. He's still swelling quite a bit, and waking up many a morning with a very swollen face. Hoping to get some answers on that as well.
Emily is super busy this week. She's got to be at school early every day to help run the united way fundraiser. It's also spirit week at school and since she's part of student counsel she is actively involved in that as well.
Jace is going to hopefully be meeting with his doc. He again lost a lot of weight this week and we can't go like this much longer.
Ben has his 1st field trip this week to the pumpkin patch. He's excited to get to go.
Ari enjoys every week of school!
Tomorrow is Bob's birthday! We are hoping to have a nice quite family evening at home. We went to the farmers market this last weekend so we have a lot of fresh yummy veggies to make up this week!
Please keep some of our Mito kiddos in your prayers. There are a few in the hospital right now who are really struggling. Please pray for them, their families, and their doctors!!!
My tiny man has had a rougher few days. He's had his cough, and has had some blood sugar instability. Today he ran a fever again (highest we've seen for a few weeks) as well as had some blood sugar drops. He has a bright red rash on his cheeks and has been very sleepy. Yesterday he had a lot of drainage, but today that is gone. Some upper respiratory crackles but nothing down in his lungs. Not sure which way it's going to go but it's definitely been getting progressively worse over the last few weeks. This week we meet with his pulmonologist /sleep study doctor and I'm anxious for that. I'm hoping we can find some relief for the restless leg syndrome and for the breathing issues. His Mito doc AND his endocrinologist don't believe that the growth hormone is causing the increase in issues, BUT his pulmonologist and pediatrician believe that it is. His Mito doc doesn't sugar coat anything and he simply feels it the progression of the disease. I hear docs say that but I struggle so very much to believe it...to grasp it. I'm tired of hearing it. I can't give up and I wish they wouldn't give up. Any way you look at it, this is a major appt and we are ready to get some solutions for the sleeping issues. It's so hard for a kiddo who already has energy issues to struggle so deeply with sleep, it makes the energy ten-folds worse.
We also will be making some phone calls this week to change around a few meds as well as to rework his feeds. He's still swelling quite a bit, and waking up many a morning with a very swollen face. Hoping to get some answers on that as well.
Emily is super busy this week. She's got to be at school early every day to help run the united way fundraiser. It's also spirit week at school and since she's part of student counsel she is actively involved in that as well.
Jace is going to hopefully be meeting with his doc. He again lost a lot of weight this week and we can't go like this much longer.
Ben has his 1st field trip this week to the pumpkin patch. He's excited to get to go.
Ari enjoys every week of school!
Tomorrow is Bob's birthday! We are hoping to have a nice quite family evening at home. We went to the farmers market this last weekend so we have a lot of fresh yummy veggies to make up this week!
Please keep some of our Mito kiddos in your prayers. There are a few in the hospital right now who are really struggling. Please pray for them, their families, and their doctors!!!
Friday, October 14, 2011
Garage Sale and updates
Again. I feel like I keep falling so far behind. Last saturday we had a garage sale. The kids set up a table and sold "Muffins for Mito". They did well and enjoyed spreading awareness about Mito and their little brother.
The week started with a rough Monday. My little man had his renal ultrasounds and his appt with the surgeon. His kidneys look the same, a touch larger, but not scary bad. His surgeon is still not comfortable operating and is also not comfortable stopping the antibiotics. Eli has been on them since 3 days old and will probably be on them for a long time to come. They are helping prevent infection, although they do cause some risks as well. The surgeon was concerned though about his testicle surgery. The left one has already tried to go back up and has shrunk considerably. The right still can't be palpated although we know it's there from pictures at the last surgery. He is afraid to try and re-operate on the left as he's afraid touching it will cause it to break off. He does however want to operate on the right. He wants to go in and attempt to pull it down. He isn't confident however that it is salvageable at this point after being inside Eli's body that always runs hot because of his autonomic issues. He will either remove it or lower it. He's hoping it's still partially good as Eli needs those hormones since his pituitary gland isn't functioning. We shall see. He has scheduled the surgery for January 3rd. He wants all the other docs contacted so they can join in and combine under his anesthesia. Eli can only be under so long so we will back to prioritizing surgeries. Something we have had to do many times before. He will as always reserve a bed, and we will have a full sit down with anesthesia beforehand.
On Tuesday Eli had the orthopedic surgeon. &%^#$*&%$#*....that is how I felt about it. She says his hips are good BUT his bones are improperly shaped at the hip AND knee, that his hypotonia is causing major issues AND that his achilles tendon is way to tight, BUT walking isn't important for a kid like him and we can just worry about it when he's older or he can just learn to compensate for it. I fired her and DEMANDED a new doc. I told her that just because he has mito that he deserves EVERY opportunity to do basic life skills like walking. I have NEVER been so angry at a doctor. It was clearly not a good experience.
Eli had PT on Wednesday. This was his 1st time going into the heated therapy pool. The first and last time that we took Eli swimming he had alot of issues maintaining his body temp so we never took him back. He did great in the therapy pool and after a bit really seemed to enjoy the water. He will try again in a few weeks.
Today we again had the garage sale. The kids didn't have school so they got to help out. They again did their Muffins for Mito. They did amazing! Towards the end of the day they had 1 muffin left. We saw a man chatting with them. Next thing we know he is walking up to us, muffin in hand. He talks to us about how Emily told him about Mito and Eli. He said how strong we must be, and how he was thinking about us and would be praying for us. He told us to stay strong. He said he couldn't donate much but he gave the kids some money. When we walked up to Emily she was crying. The man had given her $100 for 1 muffin. Bob walked across the street and thanked the man even more than we had originally. The man cried and chatted with Bob for a bit. We are forever amazed by the people we have met along this road. In 2 days our kiddos sold 10 dozen muffins and earned $190 for the UMDF and Eli's medical care! We are super proud of them!!
Alot of changes have been going on around our household this week. We are prioritizing and reorganizing. Some things are having to come to an end and some things are being added. The stress level has hit the critical point. We are beyond exhausted and so is Eli. We are having to end some things that we didn't want to end. It's been a long road coming and we've had to really talk and decide what is best for all of us.
Eli has struggled a bit today, his allergies are again flaring up. He's been coughing quite a bit which has resulted in alot of gagging and dropping of his sats. This next week he meets with his Sleep Medicine Doc/Pulmonologist. We will hopefully be working out a better plan for Eli's BiPAP and sleeping issues, as well as the restless leg syndrome, and a full plan for his upcoming surgery. We are also hoping to get this last round of genetic testing back. He has an appt with his endocrine doc coming up, alot of phone calls with docs for his upcoming surgery, and some very long talks with his hematologist to discuss how we want to handle this surgery and the risk of clots with Eli.
Emily ~ She's staying busy. She has turned into quite the advocate, event coordinator and fundraiser. She is working hard with her Mito awareness, has been actively involved in student council and has been selected to help run the United Way campaign at their school this week, as well as all of the fundraising for her trip later this school year. She's also still enjoying choir, strings and everything else!
Jace ~ He's finishing up his 1st book for book club. They meet next week. He's been involved with the good news club at school and is enjoying that. He's enjoying his ASL class and is learning alot!
Ben ~ He's been a mess. We just finally got his meds back up to a full dose so we are hoping that helps. He's enjoying school, mostly. He's working hard in speech and some extra social skills help. He's also going to ASL class and seems to be learning some.
Ari ~ She's loving school. She has made some friends and is so excited when she gets there each day to sit with them and chat. We've been struggling some still with getting her to eat, but constantly trying new things to see if we can work thru that.
Bob and I are same as always. Like I said above we are really adjusting some things in our life. We have been working out a minimum of 3 times a week, which normally ends up around 6 times a week. I've lost 16lbs at this point, and am enjoying getting back into a workout routine.
More updates soon. I will also try to get a few pictures up soon. Tomorrow Bob and I are going on a date morning. We are heading to the farmers market and to a health and wellness fair. In the afternoon we are hoping to take the oldest 4 out to the park. We will see how the day goes!
The week started with a rough Monday. My little man had his renal ultrasounds and his appt with the surgeon. His kidneys look the same, a touch larger, but not scary bad. His surgeon is still not comfortable operating and is also not comfortable stopping the antibiotics. Eli has been on them since 3 days old and will probably be on them for a long time to come. They are helping prevent infection, although they do cause some risks as well. The surgeon was concerned though about his testicle surgery. The left one has already tried to go back up and has shrunk considerably. The right still can't be palpated although we know it's there from pictures at the last surgery. He is afraid to try and re-operate on the left as he's afraid touching it will cause it to break off. He does however want to operate on the right. He wants to go in and attempt to pull it down. He isn't confident however that it is salvageable at this point after being inside Eli's body that always runs hot because of his autonomic issues. He will either remove it or lower it. He's hoping it's still partially good as Eli needs those hormones since his pituitary gland isn't functioning. We shall see. He has scheduled the surgery for January 3rd. He wants all the other docs contacted so they can join in and combine under his anesthesia. Eli can only be under so long so we will back to prioritizing surgeries. Something we have had to do many times before. He will as always reserve a bed, and we will have a full sit down with anesthesia beforehand.
On Tuesday Eli had the orthopedic surgeon. &%^#$*&%$#*....that is how I felt about it. She says his hips are good BUT his bones are improperly shaped at the hip AND knee, that his hypotonia is causing major issues AND that his achilles tendon is way to tight, BUT walking isn't important for a kid like him and we can just worry about it when he's older or he can just learn to compensate for it. I fired her and DEMANDED a new doc. I told her that just because he has mito that he deserves EVERY opportunity to do basic life skills like walking. I have NEVER been so angry at a doctor. It was clearly not a good experience.
Eli had PT on Wednesday. This was his 1st time going into the heated therapy pool. The first and last time that we took Eli swimming he had alot of issues maintaining his body temp so we never took him back. He did great in the therapy pool and after a bit really seemed to enjoy the water. He will try again in a few weeks.
Today we again had the garage sale. The kids didn't have school so they got to help out. They again did their Muffins for Mito. They did amazing! Towards the end of the day they had 1 muffin left. We saw a man chatting with them. Next thing we know he is walking up to us, muffin in hand. He talks to us about how Emily told him about Mito and Eli. He said how strong we must be, and how he was thinking about us and would be praying for us. He told us to stay strong. He said he couldn't donate much but he gave the kids some money. When we walked up to Emily she was crying. The man had given her $100 for 1 muffin. Bob walked across the street and thanked the man even more than we had originally. The man cried and chatted with Bob for a bit. We are forever amazed by the people we have met along this road. In 2 days our kiddos sold 10 dozen muffins and earned $190 for the UMDF and Eli's medical care! We are super proud of them!!
Alot of changes have been going on around our household this week. We are prioritizing and reorganizing. Some things are having to come to an end and some things are being added. The stress level has hit the critical point. We are beyond exhausted and so is Eli. We are having to end some things that we didn't want to end. It's been a long road coming and we've had to really talk and decide what is best for all of us.
Eli has struggled a bit today, his allergies are again flaring up. He's been coughing quite a bit which has resulted in alot of gagging and dropping of his sats. This next week he meets with his Sleep Medicine Doc/Pulmonologist. We will hopefully be working out a better plan for Eli's BiPAP and sleeping issues, as well as the restless leg syndrome, and a full plan for his upcoming surgery. We are also hoping to get this last round of genetic testing back. He has an appt with his endocrine doc coming up, alot of phone calls with docs for his upcoming surgery, and some very long talks with his hematologist to discuss how we want to handle this surgery and the risk of clots with Eli.
Emily ~ She's staying busy. She has turned into quite the advocate, event coordinator and fundraiser. She is working hard with her Mito awareness, has been actively involved in student council and has been selected to help run the United Way campaign at their school this week, as well as all of the fundraising for her trip later this school year. She's also still enjoying choir, strings and everything else!
Jace ~ He's finishing up his 1st book for book club. They meet next week. He's been involved with the good news club at school and is enjoying that. He's enjoying his ASL class and is learning alot!
Ben ~ He's been a mess. We just finally got his meds back up to a full dose so we are hoping that helps. He's enjoying school, mostly. He's working hard in speech and some extra social skills help. He's also going to ASL class and seems to be learning some.
Ari ~ She's loving school. She has made some friends and is so excited when she gets there each day to sit with them and chat. We've been struggling some still with getting her to eat, but constantly trying new things to see if we can work thru that.
Bob and I are same as always. Like I said above we are really adjusting some things in our life. We have been working out a minimum of 3 times a week, which normally ends up around 6 times a week. I've lost 16lbs at this point, and am enjoying getting back into a workout routine.
More updates soon. I will also try to get a few pictures up soon. Tomorrow Bob and I are going on a date morning. We are heading to the farmers market and to a health and wellness fair. In the afternoon we are hoping to take the oldest 4 out to the park. We will see how the day goes!
Friday, October 7, 2011
Quick Update
It's been a slow week, which was very much needed.
Eli's allergies have been causing him some issues, which has caused the choking & gagging to come back. Finally got orders from his doctor today and we are going to try and double his allergy meds as well as continuing with the spray. Next step will be to either find a new allergy med, add another one, or to up his meds that help keep his secretions low. We shall see. He had his ASL playgroup again today and fell and hit his head fairly hard. He's doing ok so far, so that's good. He also is apparently allergic to something at playgroup and has a rash all over his hands and face. Not sure what it is.
The others are doing well. Tonight we are going to the oldest 3's school for a Family Bingo night. The kids are excited about that.
More updates later this weekend.
Eli's allergies have been causing him some issues, which has caused the choking & gagging to come back. Finally got orders from his doctor today and we are going to try and double his allergy meds as well as continuing with the spray. Next step will be to either find a new allergy med, add another one, or to up his meds that help keep his secretions low. We shall see. He had his ASL playgroup again today and fell and hit his head fairly hard. He's doing ok so far, so that's good. He also is apparently allergic to something at playgroup and has a rash all over his hands and face. Not sure what it is.
The others are doing well. Tonight we are going to the oldest 3's school for a Family Bingo night. The kids are excited about that.
More updates later this weekend.
Tuesday, October 4, 2011
Quick Check In
Eli has had a rough day. His allergies are getting worse and worse. He's choking and gagging more. The side of his face is now swollen and he's pulling on his ear. Low grade fever and slightly elevated heart rate. I spent the entire day talking with docs. Endocrine and pulmonology both want to see him ASAP. Pulm got his labs back. His iron was high and his feratin (protein in iron) was low. They aren't sure what's up with that or what to do about it at this point. He has been incredibly clingy all day. With him being sick the rest of his body is attempting to keep up. His blood sugars have been low today so that's taking some adjusting.
Emily is doing well. She had student counsel today, and has continued to stay busy with choir and strings. She has all A's and is doing good with her studies.
Jace is doing super. His new meds are AMAZING. We are shocked by how he's been. He's calm and quiet, and respectful and has been super focused on his work and everything. We are curious for parent teacher conferences to see how he's doing in school.
Ben is doing a bit better. We are going to be raising his meds back up to a full dose, and hopefully that takes this last bit of issue away. He's eating decent, although still struggling with his weight. School is still reporting some attention issues, but working to come up with a better plan. His new IEP is in place and we are super happy with it. He has even more than we had hoped for!
Ari is ok. She's enjoying school, and making some friends there. She's enjoying having her little "homework" backpack, which is a book to bring home and share with the family. She's still struggling with eating at home, and trying to find her place with her siblings. Alot of defiance. Hoping as she's in school that she settles in more.
We started all of our ASL classes last week. The kids enjoyed them. Ari isn't able to go, and we aren't sure if Ben is going to be able to handle going, but Emily and Jace will definitely continue. Bob and I enjoyed the adult class as well and feel like we will learn alot.
More updates over the next few days as I get more information on what's going on / what we will change/do with little man.
Emily is doing well. She had student counsel today, and has continued to stay busy with choir and strings. She has all A's and is doing good with her studies.
Jace is doing super. His new meds are AMAZING. We are shocked by how he's been. He's calm and quiet, and respectful and has been super focused on his work and everything. We are curious for parent teacher conferences to see how he's doing in school.
Ben is doing a bit better. We are going to be raising his meds back up to a full dose, and hopefully that takes this last bit of issue away. He's eating decent, although still struggling with his weight. School is still reporting some attention issues, but working to come up with a better plan. His new IEP is in place and we are super happy with it. He has even more than we had hoped for!
Ari is ok. She's enjoying school, and making some friends there. She's enjoying having her little "homework" backpack, which is a book to bring home and share with the family. She's still struggling with eating at home, and trying to find her place with her siblings. Alot of defiance. Hoping as she's in school that she settles in more.
We started all of our ASL classes last week. The kids enjoyed them. Ari isn't able to go, and we aren't sure if Ben is going to be able to handle going, but Emily and Jace will definitely continue. Bob and I enjoyed the adult class as well and feel like we will learn alot.
More updates over the next few days as I get more information on what's going on / what we will change/do with little man.
Thursday, September 29, 2011
Geneticist and Neurologist
Today was a day from hell. The morning at home started out rough with a lot of issues. We got out of the door 20 minutes late. Eli ended up missing all of OT. I dropped Eli and his nurse off at therapy and I ran to CMH to pick up some medical records. Eli had PT and ST. I got all of his papers and showed back up for the end of PT. We had to immediately leave following for his appt. with the geneticist /neurologist who specializes with Mitochondrial Disease.
We met with the genetic counselor for over 1 hr. She went thru a lot of history. Then the doctor came in and spent over an hr going thru all of his end. He talked alot about Eli's significant clinical history. He praised how good of a job Bob and I have done. He was amazed at how well Eli looks compared to what he expected from Eli's clinical history, tests, and diagnosis! We discussed alot about Mito and his thoughts on Eli. He believes there is still a significant piece of the puzzle left to find. He has a feeling he MAY know what that is but the road to testing won't be fast or easy. He does believe that Eli has a neurodegenerative genetic disorder, as well as a chromosomal issue. He ran some tests today(alot of chromosomal tests) and is working on getting the final test done. He says no matter what the FINAL diagnosis/outcome is there is NO cure and that we are currently doing everything he believes that we should be doing treatment wise. Once he has the final piece of the puzzle he will be able to give a better idea to what we should be expecting and may possibly see and a possible prognosis. Not conversations we are looking forward to having.
He also discussed Eli's growth hormone and the increase in apnea issues. He does not believe they are linked. He believes the increase in apnea is simply because Eli's disease is progressing which is resulting in more problems with his central mixed sleep apnea. So the good news is he believes that the growth hormone injections are very important and that we should continue, the bad news is again this horrible disease is progressing.
There was brief discussion of how well Eli did on TPN, and how he wasn't surprised int he least. This is unfortunately/fortunately an issue that is currently no open for discussion since Eli has a blood clotting disorder and has already had active clots, and still has the calcified leason in his heart.
After this Eli had all of his lab work and we headed to his main neurologist. He said Eli's keppra levels looked much better and that since we haven't been seeing any seizure activity that he wants to stay at this same dose for now. He was also encouraged that his legs have improved some. There isn't quite as much tightness on one side, with looseness on the other. His hips are definitely still struggling as are his knees and ankles but improvement on the mixed tone. He is happy with the progress he is seeing, and so are we!
Eli didn't get much in the way of sleep at all today. We left the house at 8am and didn't get home until after 3. Considering his day he did well, but boy is he exhausted. His temp is up, his blood sugar is down, his little cheeks are bright red, and his extremities are moddled. Fun times!
I will update more in the next few days.
Thank you to everyone for the prayers and kind thoughts today!!!
We met with the genetic counselor for over 1 hr. She went thru a lot of history. Then the doctor came in and spent over an hr going thru all of his end. He talked alot about Eli's significant clinical history. He praised how good of a job Bob and I have done. He was amazed at how well Eli looks compared to what he expected from Eli's clinical history, tests, and diagnosis! We discussed alot about Mito and his thoughts on Eli. He believes there is still a significant piece of the puzzle left to find. He has a feeling he MAY know what that is but the road to testing won't be fast or easy. He does believe that Eli has a neurodegenerative genetic disorder, as well as a chromosomal issue. He ran some tests today(alot of chromosomal tests) and is working on getting the final test done. He says no matter what the FINAL diagnosis/outcome is there is NO cure and that we are currently doing everything he believes that we should be doing treatment wise. Once he has the final piece of the puzzle he will be able to give a better idea to what we should be expecting and may possibly see and a possible prognosis. Not conversations we are looking forward to having.
He also discussed Eli's growth hormone and the increase in apnea issues. He does not believe they are linked. He believes the increase in apnea is simply because Eli's disease is progressing which is resulting in more problems with his central mixed sleep apnea. So the good news is he believes that the growth hormone injections are very important and that we should continue, the bad news is again this horrible disease is progressing.
There was brief discussion of how well Eli did on TPN, and how he wasn't surprised int he least. This is unfortunately/fortunately an issue that is currently no open for discussion since Eli has a blood clotting disorder and has already had active clots, and still has the calcified leason in his heart.
After this Eli had all of his lab work and we headed to his main neurologist. He said Eli's keppra levels looked much better and that since we haven't been seeing any seizure activity that he wants to stay at this same dose for now. He was also encouraged that his legs have improved some. There isn't quite as much tightness on one side, with looseness on the other. His hips are definitely still struggling as are his knees and ankles but improvement on the mixed tone. He is happy with the progress he is seeing, and so are we!
Eli didn't get much in the way of sleep at all today. We left the house at 8am and didn't get home until after 3. Considering his day he did well, but boy is he exhausted. His temp is up, his blood sugar is down, his little cheeks are bright red, and his extremities are moddled. Fun times!
I will update more in the next few days.
Thank you to everyone for the prayers and kind thoughts today!!!
Tuesday, September 27, 2011
Last week ended fairly quietly. Eli had therapy and just laid low at home resting. We got all of his new equipment started, which has been way more of an adjustment than expected.
This weekend we spent time together as a family relaxing. We went to the park on saturday. We spent over 2 hrs there. It was great! The park is huge with walking paths and lakes and tons of areas to explore, as well as the playgrounds. Eli loved being outdoors.
We watched some movies, I worked on some quilting and we just hung out. The kids played alot of Wii. Ben is currently addicted to it.
Monday brought a few appts, as well as Eli's therapy. He worked a bit with the ipad, and his in home physical therapist brought him a gait trainer to use here at home until his comes in.
These next few days bring multiple appts. The most important being the Mito doc here in KC, on Thursday. This is the doctor that we came to see in January. This is when Eli crashed at the Ronald McDonald house and ended up being rushed by ambulance to CMH. We are finally going to be seeing him this Thursday. I'm nervous and excited. Eli really needs someone local on his team who truely gets mito.
Emily ~ She is doing well. Enjoying choir and violin. She was voted by her class to be in student counsel and has her 1st mtg today. She's enjoying school and is making some friends. A little girl from her class called yesterday and asked if Emily wants to get together later this week. She's also received her first book for her book club and is excited for their first mtg in Oct.
Jace ~ Jace is ok. He's on another medication adjustment right now and hopefully it will see more benefit. He's still on a food strike and has lost a substantial amount of weight. He and I meet with his doctor today to find out what next. His GI system is doing much better with the change of diet..now if only we could get him to eat enough. He also has his 1st book for book club and will have his 1st mtg in Oct as well. School has gotten his IEP in place and he is working with speech twice a week, and enjoying working with his new speech therapist.
Ben ~ Ben is a mess. When he's on his new med he's a mess at school and decent at home. Now that his doc is weaning him off of it, because of the school's complaints, he's a mess at home. Unsure yet how he is doing at school. We will be calling the doc to find out what next. We also have his IEP mtg tomorrow so we will get more info as well. Ben's current addiction is the Wii, specifically the game lumberjacks. He wants to play from sun up to sun down. It's been a challenge. He's eating decently and is at least maintaining his weight right now.
Ari ~ She's loving school. She's such a social girl and is really enjoying making friends and being around so many kids her age. She's hit or miss with the food, and is doing a baseline job of maintaining her weight.
Bob and I ~ same, same. Just keeping up with the house, and the 4 olders, and Mr Eli. This week begins our family sign language classes at the Kansas School for the Deaf. Everyone but Ari and Eli gets to go an participate. We are excited to get to learn more and meet more families.
I will get pictures up later today from the weekend. Currently blogger photo upload is a mess.
This weekend we spent time together as a family relaxing. We went to the park on saturday. We spent over 2 hrs there. It was great! The park is huge with walking paths and lakes and tons of areas to explore, as well as the playgrounds. Eli loved being outdoors.
We watched some movies, I worked on some quilting and we just hung out. The kids played alot of Wii. Ben is currently addicted to it.
Monday brought a few appts, as well as Eli's therapy. He worked a bit with the ipad, and his in home physical therapist brought him a gait trainer to use here at home until his comes in.
These next few days bring multiple appts. The most important being the Mito doc here in KC, on Thursday. This is the doctor that we came to see in January. This is when Eli crashed at the Ronald McDonald house and ended up being rushed by ambulance to CMH. We are finally going to be seeing him this Thursday. I'm nervous and excited. Eli really needs someone local on his team who truely gets mito.
Emily ~ She is doing well. Enjoying choir and violin. She was voted by her class to be in student counsel and has her 1st mtg today. She's enjoying school and is making some friends. A little girl from her class called yesterday and asked if Emily wants to get together later this week. She's also received her first book for her book club and is excited for their first mtg in Oct.
Jace ~ Jace is ok. He's on another medication adjustment right now and hopefully it will see more benefit. He's still on a food strike and has lost a substantial amount of weight. He and I meet with his doctor today to find out what next. His GI system is doing much better with the change of diet..now if only we could get him to eat enough. He also has his 1st book for book club and will have his 1st mtg in Oct as well. School has gotten his IEP in place and he is working with speech twice a week, and enjoying working with his new speech therapist.
Ben ~ Ben is a mess. When he's on his new med he's a mess at school and decent at home. Now that his doc is weaning him off of it, because of the school's complaints, he's a mess at home. Unsure yet how he is doing at school. We will be calling the doc to find out what next. We also have his IEP mtg tomorrow so we will get more info as well. Ben's current addiction is the Wii, specifically the game lumberjacks. He wants to play from sun up to sun down. It's been a challenge. He's eating decently and is at least maintaining his weight right now.
Ari ~ She's loving school. She's such a social girl and is really enjoying making friends and being around so many kids her age. She's hit or miss with the food, and is doing a baseline job of maintaining her weight.
Bob and I ~ same, same. Just keeping up with the house, and the 4 olders, and Mr Eli. This week begins our family sign language classes at the Kansas School for the Deaf. Everyone but Ari and Eli gets to go an participate. We are excited to get to learn more and meet more families.
I will get pictures up later today from the weekend. Currently blogger photo upload is a mess.
Friday, September 23, 2011
Yet Another
It is with a heavy heart that I have to send my thoughts and prayers to yet ANOTHER family this week. May you be flying with the angels and chasing butterflies Mason! Again, THIS is why we are trying SO HARD to raise awareness about this disease. that's 3 children(Robert, Eva, Mason) lost in 4 DAYS...
Thursday, September 22, 2011
Song and Quote
What a day so far. Eli had therapy this morning, OT and PT. He did decent at OT, exploring some new textures and working with some grasping skills. Also alot of hand/eye coordination work. Then he headed over to PT. She stood him up behind a walker and he walked halfway across the room!!! By the time he got to the other side he was exhausted and his little legs were shaking and he just toppled over.
Afterwards I needed to run to Green Acres for Eli's probiotics. Eli was in his wheelchair and had his tray with his toys attached. A little girl was drawn to him and spent some time playing with him. We got to chatting with her mom. She asked us about Eli and his diagnosis. We chatted openly about Mitochondrial disease and how it affects our little man. We chatted with her about it being awareness week and how there is so little awareness about Mito. We gave her one of Eli's cards. Come to find out she is a TV producer and has done some work with Discovery Health and such. I was shocked. I hope that meeting our little man will plant that thought in her mind to go out and learn about Mito and to help spread awareness as well. Heavens knows that a disease like this needs awareness!! As we got into the van my phone dinged. It was an email that a dear friend of our had posted a video with us tagged. I sat in the parking lot, listening...crying.
I was again reminded how blessed we are. My little man is such a warrior, if only we could be as strong as him.
Upon getting home I saw a quote a friend had posted. It made my heart flutter.
I will share the quote and song here, as maybe it will do the same for others.
"Some people never meet their heros, I gave birth to mine."
Wednesday, September 21, 2011
Nothing
This morning Eli woke up really croupy and raspy/wheezy. Called his doc and they had us bring him in. After a warm bath and all of that he was breathing much better. Doc did a full check over and wanted to chat. Never a great sign. He had seen the sleep study results. He was concerned about Eli beginning to gag more again. He decided to increase his robanol (the med that helps lower Eli's secretions). He discussed his concerns about the dosing we are already on. He's concerned that much more and it will thicken his secretions so much that he won't be able to cough them up (Eli is a weak cougher. Takes alot of work). The problem with not increasing it though is he's having more secretions again that he is choking on. Hard to make a full choice. He also informed us that Eli has restless leg syndrome and that the severity of it made them think that he is struggling with anemia again and low feretin levels. He is also concerned that the growth hormone is causing eli's sleep apnea to get considerably worse, something that they knew could possibly happen. He suggested we speak with the pulmonologist.
We left and within a few the pulmonologist/sleep study doc was calling me. We spoke for 20ish minutes. Apparently the sleep study came back with alot of issues. Eli had alot of central mixed sleep apnea, worse than on previous sleep studies. He also had alot of leg movement, 38 an hr on average, leading to a restless leg syndrome diagnosis. He believes it's an anemia/feretin issue and has placed blood draw orders and will most likely be ordering iron supplements. He is placing Eli on BiPAP and O2 bled into the line. He is also placing a high end rescue level on the BiPAP to help push Eli when he isn't able to sufficiently breath. He's placing Eli on a special apnea monitor that also does heartrate and O2 levels. He is adding flonase spray to help open the nasal passages before starting the BiPAP each night. He agrees with the robanol increase and is concerned we may have to push farther on it. He's concerned if Eli isn't dry enough that the BiPAP will push fluids down into his lungs. He warned that we are fighting an uphill battle.
Eli's seizure meds cause a depressed respiratory status. His seizures do as well. So do the growth hormones. And so can mito. Not to mention his central mixed sleep apnea, reactive airway disorder, and in general permanent lung damage from all the other shit his poor little lungs have had to endure. He's simply hoping to get Eli out of the critical point where he is now of dropping his sats 2 to 4 dozen times a night, to where Eli can get a bit more sleep...us too.
It has come up now multiple times that we may need to discontinue some of Eli's treatments and interventions because they are making other things so much worse. There are many dangers to stopping the other treatments BUT we have to protect the primary life function of his lungs. None of Eli's doctors seem to be sure what the right choice is here.
I want to hate them. I want to scream at them. I want to demand 3rd and 4th and 5th opinions. I want to tell them how stupid they are and how they don't know anything and how I want a doctor that knows more than they do. I want to berate them for not coming up with a solution. For not treating Eli until he's all better. I was complaining in the car....so angry that all of the doctors are giving up. I want to push them until they figure it out, until they fix the problem.
Halfway home it hit me. There is no fixing it. These aren't stupid doctors. Eli's pulmonologist/sleep study doc has been practicing since 1972, he is the head of the pulmonology AND sleep studies dept at our childrens hospital. He is brilliant. He truely cares about his patients and is trying everything he knows to try. Most of Eli's doctors are the same. Eli sees mostly dept heads. These are amazing docs. It's not their fault. It's nobody's fault. For the first time it truely hit me that it's not that we are seeing bad doctors, or that they are refusing to help my son, or that they don't want to spend the time trying to help him, it's that they can't. They can't fix my little boy. He has a horrible horrible disease. A disease that is robbing my little man of his entire being. It's stealing everything from him, from us. This is killing me as a mother. It's horrible. Words can't describe the crushing feeling I felt inside when it finally came to me that it's not for lack of a better doctor. It's not fair. It's not how life should be. My little mans disease is progressing and there is nothing that I can do, nothing that bob can do, nothing that my kids can do, nothing that the doctors can do. Nothing.
We left and within a few the pulmonologist/sleep study doc was calling me. We spoke for 20ish minutes. Apparently the sleep study came back with alot of issues. Eli had alot of central mixed sleep apnea, worse than on previous sleep studies. He also had alot of leg movement, 38 an hr on average, leading to a restless leg syndrome diagnosis. He believes it's an anemia/feretin issue and has placed blood draw orders and will most likely be ordering iron supplements. He is placing Eli on BiPAP and O2 bled into the line. He is also placing a high end rescue level on the BiPAP to help push Eli when he isn't able to sufficiently breath. He's placing Eli on a special apnea monitor that also does heartrate and O2 levels. He is adding flonase spray to help open the nasal passages before starting the BiPAP each night. He agrees with the robanol increase and is concerned we may have to push farther on it. He's concerned if Eli isn't dry enough that the BiPAP will push fluids down into his lungs. He warned that we are fighting an uphill battle.
Eli's seizure meds cause a depressed respiratory status. His seizures do as well. So do the growth hormones. And so can mito. Not to mention his central mixed sleep apnea, reactive airway disorder, and in general permanent lung damage from all the other shit his poor little lungs have had to endure. He's simply hoping to get Eli out of the critical point where he is now of dropping his sats 2 to 4 dozen times a night, to where Eli can get a bit more sleep...us too.
It has come up now multiple times that we may need to discontinue some of Eli's treatments and interventions because they are making other things so much worse. There are many dangers to stopping the other treatments BUT we have to protect the primary life function of his lungs. None of Eli's doctors seem to be sure what the right choice is here.
I want to hate them. I want to scream at them. I want to demand 3rd and 4th and 5th opinions. I want to tell them how stupid they are and how they don't know anything and how I want a doctor that knows more than they do. I want to berate them for not coming up with a solution. For not treating Eli until he's all better. I was complaining in the car....so angry that all of the doctors are giving up. I want to push them until they figure it out, until they fix the problem.
Halfway home it hit me. There is no fixing it. These aren't stupid doctors. Eli's pulmonologist/sleep study doc has been practicing since 1972, he is the head of the pulmonology AND sleep studies dept at our childrens hospital. He is brilliant. He truely cares about his patients and is trying everything he knows to try. Most of Eli's doctors are the same. Eli sees mostly dept heads. These are amazing docs. It's not their fault. It's nobody's fault. For the first time it truely hit me that it's not that we are seeing bad doctors, or that they are refusing to help my son, or that they don't want to spend the time trying to help him, it's that they can't. They can't fix my little boy. He has a horrible horrible disease. A disease that is robbing my little man of his entire being. It's stealing everything from him, from us. This is killing me as a mother. It's horrible. Words can't describe the crushing feeling I felt inside when it finally came to me that it's not for lack of a better doctor. It's not fair. It's not how life should be. My little mans disease is progressing and there is nothing that I can do, nothing that bob can do, nothing that my kids can do, nothing that the doctors can do. Nothing.
Tuesday, September 20, 2011
Alot of Updates with Pictures!!
Last week was a busy emotional blur. We spent most of the week rushing around getting ready for the walk. We made 40 something shirts, we made 40 something crocheted flower pins, we cleaned house, planned menus, grocery shopped, and kept up with all of the appts and meetings and such.
Eli had a decent week. He was tired alot and had alot of O2 issues. We were up alot messing with his CPAP and O2. He ran low grade fevers alot, and had alot of temperature control issues with the goofy weather changes.
Friday evening our family and friends got into town. We had a full house.
Saturday morning started early and we were at the walk by 8am. It was amazing. It was so awesome seeing other families and people effected by Mito. We met alot of great people and exchanged contact info! It was just so surreal for me.
Our family and friends left on Sunday and we spent the rest of the day relaxing.
This week has been busy as well.
Ari started preschool yesterday. She goes 5 afternoons a week for 3 hrs each day. She had alot of fun and has already made some new friends.
Ben has been a mess. His teacher is struggling with him in class, and we are having many of the same issues at home. He and I met with the nutritionist and she's out of ideas. he's being referred over to a feeding therapy team. He also seems to be struggling with the medication change and we are all unsure what to do. We are keeping in close contact with his doctors.
Jace is doing ok. His meds are being slowly increased and he's done well with that but we still don't seem to be at the perfect mix. He's enjoying school and has made some friends. When he's not at school he's super busy at home with friends in the neighborhood.
Emily has been beyond busy. She's in choir twice a week, strings (violin) twice a week, math club once a week, AND she was voted into Student Counsel by her class. Top all of that with homework and violin practice and the book club she's participating in, she's always on the go! She is enjoying it though and we are beyond happy about that.
Food. We are doing well. It's been such a huge change for our family. We have been vegetarian for 3 months, and Vegan and Gluten free for almost 7 weeks. We have found so many great recipes, and have been able to replace almost all of our favorite foods! It's been quite the learning process for all of us, and we have all really had to step out of our comfort zone! As most of you know this isn't the only household change we have made. We are still going strong on cleaning supplies, no paper products, no disposable containers, etc.. We are super happy with the changes that we have made!
Bob and I are doing ok. Life is hectic. Like always it takes everything we have to keep going thru each day. We struggle finding the balance of time, and rarely succeed with it.
Eli.. Eli is Eli. It's always something. He's still struggling with his O2 at night. He alarmed over 2 dozen times last night. He's still been running his low grades. He's had a bit of a struggle with his change in feeds. His Keppra (seizure meds) levels were barely within normal limits so his doc has again upped his meds. I got a call today from our DME saying that they needed to bring out Eli's new BiPAP and get all of that set up. I knew nothing about this. Apparently his sleep study came back. They thought that Eli was on O2 during the day as well. I said no. She said I needed to call his pulmonologist/sleep study doc immediately tomorrow morning. I have no idea what is going on. Eli has alot of appts coming up. We meet with his neurologist, pulmonologist, opthamologist, his new AFO's come in, nutritionist, his main doc to discuss his anticoagulation precautions, and he meets with his wheelchair DME and PT to get his stander and gait trainer ordered. It's alot going on and it's a struggle to keep up with it all. It's so hard to see the progressive disease, progressing. It happens so fast something and it's so hard to deal with. They tell you it can happen, but when it does...it's just almost to much to bear.
this week is mitochondrial disease awareness week. Our oldest 4 have been amazing for mito week. They wore their team Eli tshirts on monday with their pins. They also had a pocket full of Eli info cards to pass out. All their own ideas. We have all worn our Eli pins each day, and will continue to for the rest of the week! I would like to share some things that have meant alot to me!
Mitochondrial diseases result when there is a defect that reduces the ability of the mitochondria to produce energy.
Eli had a decent week. He was tired alot and had alot of O2 issues. We were up alot messing with his CPAP and O2. He ran low grade fevers alot, and had alot of temperature control issues with the goofy weather changes.
Friday evening our family and friends got into town. We had a full house.
Saturday morning started early and we were at the walk by 8am. It was amazing. It was so awesome seeing other families and people effected by Mito. We met alot of great people and exchanged contact info! It was just so surreal for me.
Our family and friends left on Sunday and we spent the rest of the day relaxing.
This week has been busy as well.
Ari started preschool yesterday. She goes 5 afternoons a week for 3 hrs each day. She had alot of fun and has already made some new friends.
Ben has been a mess. His teacher is struggling with him in class, and we are having many of the same issues at home. He and I met with the nutritionist and she's out of ideas. he's being referred over to a feeding therapy team. He also seems to be struggling with the medication change and we are all unsure what to do. We are keeping in close contact with his doctors.
Jace is doing ok. His meds are being slowly increased and he's done well with that but we still don't seem to be at the perfect mix. He's enjoying school and has made some friends. When he's not at school he's super busy at home with friends in the neighborhood.
Emily has been beyond busy. She's in choir twice a week, strings (violin) twice a week, math club once a week, AND she was voted into Student Counsel by her class. Top all of that with homework and violin practice and the book club she's participating in, she's always on the go! She is enjoying it though and we are beyond happy about that.
Food. We are doing well. It's been such a huge change for our family. We have been vegetarian for 3 months, and Vegan and Gluten free for almost 7 weeks. We have found so many great recipes, and have been able to replace almost all of our favorite foods! It's been quite the learning process for all of us, and we have all really had to step out of our comfort zone! As most of you know this isn't the only household change we have made. We are still going strong on cleaning supplies, no paper products, no disposable containers, etc.. We are super happy with the changes that we have made!
Bob and I are doing ok. Life is hectic. Like always it takes everything we have to keep going thru each day. We struggle finding the balance of time, and rarely succeed with it.
Eli.. Eli is Eli. It's always something. He's still struggling with his O2 at night. He alarmed over 2 dozen times last night. He's still been running his low grades. He's had a bit of a struggle with his change in feeds. His Keppra (seizure meds) levels were barely within normal limits so his doc has again upped his meds. I got a call today from our DME saying that they needed to bring out Eli's new BiPAP and get all of that set up. I knew nothing about this. Apparently his sleep study came back. They thought that Eli was on O2 during the day as well. I said no. She said I needed to call his pulmonologist/sleep study doc immediately tomorrow morning. I have no idea what is going on. Eli has alot of appts coming up. We meet with his neurologist, pulmonologist, opthamologist, his new AFO's come in, nutritionist, his main doc to discuss his anticoagulation precautions, and he meets with his wheelchair DME and PT to get his stander and gait trainer ordered. It's alot going on and it's a struggle to keep up with it all. It's so hard to see the progressive disease, progressing. It happens so fast something and it's so hard to deal with. They tell you it can happen, but when it does...it's just almost to much to bear.
this week is mitochondrial disease awareness week. Our oldest 4 have been amazing for mito week. They wore their team Eli tshirts on monday with their pins. They also had a pocket full of Eli info cards to pass out. All their own ideas. We have all worn our Eli pins each day, and will continue to for the rest of the week! I would like to share some things that have meant alot to me!
Mitochondrial Disease: Cunning, Baffling, and Insidious. Like any disease without a cure, it robs, it steals, and it ruins lives. It takes our infants from us, before we can even hold them. It puts too many angels in the grave, before they can even grow up. It robs a grandparent from being able to hold their grandchild. Mito robs a mother or father from being able to raise their children. Please make awareness, so that our world, realizes that we are not invisible any longer. ♥ WE NEED A CURE
Mitochondrial diseases result when there is a defect that reduces the ability of the mitochondria to produce energy.
As the mitochondria fails to produce enough energy, the cell will not function properly and if this continues, cell death
will eventually follow. Organ systems will begin to fail and the life of the individual is compromised, changed or ended.
The real cost of mitochondrial disease is not in money, or time spent in the dr offices. The cost is in the little ones that don't live to see their next birthday. The adult that has a stroke & can never hold their child again. The teen that has dreams to be married w/ a family someday & watches those dreams slip away through a hospital window. Mito doesn't care if you are male/female, race, age, or wealth. It will take you life. Please help us search for a cure!
In closing I will post a few pics from the last few! |
| Our team tshirts all finished! |
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| my little man during a bad day of temp regulation |
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| same as above. just face closeup because i'm addicted to his little face! :) |
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| a team picture. sorry for the glare. it was that time of day. |
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| my little man at the mito walk looking beyond adorable! |
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| eli with his poster at the mito walk |
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| our front door decorated for mito awareness week. and yes our porch light is green too! |
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| Ari on her first day of preschool |
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| one of our dinner ingredients (minus carrots, pecans and raisins) turned out super yummy and colorful! |
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| Eli with his brand new tubie baby. He's laughing in this picture! i love his laugh face. |
Monday, September 12, 2011
Precautions and Discrimination
It's been a busy week. It takes everything I have in me to stay going and to slightly keep up. Blogging has fallen to the wayside a bit because of life.
Last week Eli had PT at his new therapy center. He again worked with the gait trainer, then tried out the treadmill. She also showed us a stander that she is wanting to try out with him as well. His PT called insurance and his wheelchair DME and they will be meeting us at therapy in 2 wks to get a gait trainer and stander ordered for him.
On Wednesday I also played phone tag with Eli's main doctor. Insurance again denied 2 of Eli's meds, so we were originally going to do them as shots if this occured. So I called the doc to get that done. He finally calls me back with unexpected information. They have decided in light of Eli's history, and his blood clots, and the mito, and the factor V leiden, that they are placing Eli on anticoagulation precautions. The doctor informed me that every single time we give Eli a shot we are increasing his risk of developing a blood clot. He's not comfortable giving any more shots. This changes so many of Eli's protocols. He is meeting with Eli's hematologist to work out the best and safest plan. We weren't told that they were concerned about this and that it was something that would just be monitored. They apparently have come across more info in all of his testing and labs that tells them otherwise.
On Thursday Eli had OT/PT/ST. It was a mess. They had wanted Eli to go to their group therapy sessions . They wanted him to go 5 days a week for 2 1/2 hrs a day. It's like a preschool type program. We were leary. They told us on Thursday that they didn't want his nurse in the room with him and just wanted her to hang somewhere in the building for if he had problems. They also didn't want him on his feeding pump because it is to much of a liability for them they claim. They are afraid one of the other kids will pull it out. They said during class they want him to be a normal kid and therefore don't want all of his equipment or medical interventions or nurses. This really bothered me. It to me was really discriminatory. Secondly it really hurt me. I want my little man to be like a "normal" boy too, BUT he isn't. If you take all the medical interventions and equipment away from my little man you no longer have my little man. They are apart of Eli and these interventions have helped keep my little man alive, and have allowed him to live the life that he is living. This was our first time that it has truely hit me in the face that my little man won't be able to live a normal life, interacting with normal kids in a normal environment. It was rough. (as a side note we turned them down and will NOT be sending Eli there...obviously!)
On Friday we went to Eli's first ASL playgroup. He did great. Ari enjoyed herself as well. It was definitely overwhelming to try and keep up with all of the signing and trying to remember everything I have learned so far. But we did well. Can't wait until our next one!
The weekend we stayed around the house as a family. We worked on Eli's shirts and buttons for the walk. So far we are up to 28 people on our team and more are going to be joining us on Thursday. We are super excited and looking forward to this weekend.
This week we have quite a bit going on. Eli is going to get refitted for glasses, get fitted for his new AFO's, have 6 therapy sessions, 2 nurses, 3 doctors appts, and 1 lab draw. Emily has violin twice, and choir twice. Jace has book club and boy scouts. Ben also has boy scouts. Ari has a quiet week. Bob and I just run in circles trying to keep it all going!
I will take lots of pictures this weekend at the walk and get it all updated soon!
Last week Eli had PT at his new therapy center. He again worked with the gait trainer, then tried out the treadmill. She also showed us a stander that she is wanting to try out with him as well. His PT called insurance and his wheelchair DME and they will be meeting us at therapy in 2 wks to get a gait trainer and stander ordered for him.
On Wednesday I also played phone tag with Eli's main doctor. Insurance again denied 2 of Eli's meds, so we were originally going to do them as shots if this occured. So I called the doc to get that done. He finally calls me back with unexpected information. They have decided in light of Eli's history, and his blood clots, and the mito, and the factor V leiden, that they are placing Eli on anticoagulation precautions. The doctor informed me that every single time we give Eli a shot we are increasing his risk of developing a blood clot. He's not comfortable giving any more shots. This changes so many of Eli's protocols. He is meeting with Eli's hematologist to work out the best and safest plan. We weren't told that they were concerned about this and that it was something that would just be monitored. They apparently have come across more info in all of his testing and labs that tells them otherwise.
On Thursday Eli had OT/PT/ST. It was a mess. They had wanted Eli to go to their group therapy sessions . They wanted him to go 5 days a week for 2 1/2 hrs a day. It's like a preschool type program. We were leary. They told us on Thursday that they didn't want his nurse in the room with him and just wanted her to hang somewhere in the building for if he had problems. They also didn't want him on his feeding pump because it is to much of a liability for them they claim. They are afraid one of the other kids will pull it out. They said during class they want him to be a normal kid and therefore don't want all of his equipment or medical interventions or nurses. This really bothered me. It to me was really discriminatory. Secondly it really hurt me. I want my little man to be like a "normal" boy too, BUT he isn't. If you take all the medical interventions and equipment away from my little man you no longer have my little man. They are apart of Eli and these interventions have helped keep my little man alive, and have allowed him to live the life that he is living. This was our first time that it has truely hit me in the face that my little man won't be able to live a normal life, interacting with normal kids in a normal environment. It was rough. (as a side note we turned them down and will NOT be sending Eli there...obviously!)
On Friday we went to Eli's first ASL playgroup. He did great. Ari enjoyed herself as well. It was definitely overwhelming to try and keep up with all of the signing and trying to remember everything I have learned so far. But we did well. Can't wait until our next one!
The weekend we stayed around the house as a family. We worked on Eli's shirts and buttons for the walk. So far we are up to 28 people on our team and more are going to be joining us on Thursday. We are super excited and looking forward to this weekend.
This week we have quite a bit going on. Eli is going to get refitted for glasses, get fitted for his new AFO's, have 6 therapy sessions, 2 nurses, 3 doctors appts, and 1 lab draw. Emily has violin twice, and choir twice. Jace has book club and boy scouts. Ben also has boy scouts. Ari has a quiet week. Bob and I just run in circles trying to keep it all going!
I will take lots of pictures this weekend at the walk and get it all updated soon!
Tuesday, September 6, 2011
playing catch up
Behind like always. We went out of town for the holiday weekend. We were gone thursday afternoon until monday afternoon. It was nice to get away for a few days. I got to go to my knitting group and hang out with everyone. We got to do some shopping and spent time with the kiddos. Bob and I got to go on a date night and really enjoyed the time alone. We got to visit with some friends and really enjoyed reconnecting with everyone.
We took it easy monday evening and hit the ground running this morning. Little man woke up and his nurse was disconnecting him from his feed, when she called me over. Eli's GJ tube had broken. I immediately called IR and we had to head up to the hospital. They replaced it and said that they had multiple tubes break in the same place lately. I immediately went from the hospital to Ben's IEP meeting. We agreed to a month long IEP while they get his re-evaluation finished up. We are also going to work towards getting a full health plan in place. I was able to come home for a bit then it was back out again. Ari had her in school evaluation. We met with the main child development worker, speech pathologist and occupational therapist. She will have her in home meeting with all of them on thursday and then we will have the full assessment meeting at the end of the month. Ari is really hoping to be able to start PreK soon. Then it was back home and a touch of down time before picking up the kiddos from school. Then Eli's ASL tutor came. She normally comes on Tuesday morning but since we had to go to the hospital she was able to change to this afternoon. Today we learned some more basic communication signs, as well as our days of the week, and how to sign the ABC's song! Eli is really enjoy the ABC's song.
On top of all of this I have a sick husband. He seems to have caught my cold and is coughing so much he is light headed and simply not feeling well. Fun times.
Today on facebook it gave me the whole 1 year ago today post. Wow. I year ago today Eli was in the PICU with his 1st round of pertussis. We had learned to suction and use O2 at high levels, we had learned advanced life support and how to keep him always positioned upright, keep his airway open, and how to use an ambu bag. 1 year ago today we went and picked up Ambu bags for his bedroom and the play area in our home. 1 year later Eli still has an ambu bag hanging next to an O2 tank in each room he is in primarily. It's such a strange thought to think about this. It's something you never expect to see in your home. Heck it's something that most see in a hospital and don't even realize that they see it. Yet here it sits right next to his push toy and bookshelf. I have those moments where it just hits me that this really is my life, and today was again one of those moments.
More in the next day or two. Promise.
We took it easy monday evening and hit the ground running this morning. Little man woke up and his nurse was disconnecting him from his feed, when she called me over. Eli's GJ tube had broken. I immediately called IR and we had to head up to the hospital. They replaced it and said that they had multiple tubes break in the same place lately. I immediately went from the hospital to Ben's IEP meeting. We agreed to a month long IEP while they get his re-evaluation finished up. We are also going to work towards getting a full health plan in place. I was able to come home for a bit then it was back out again. Ari had her in school evaluation. We met with the main child development worker, speech pathologist and occupational therapist. She will have her in home meeting with all of them on thursday and then we will have the full assessment meeting at the end of the month. Ari is really hoping to be able to start PreK soon. Then it was back home and a touch of down time before picking up the kiddos from school. Then Eli's ASL tutor came. She normally comes on Tuesday morning but since we had to go to the hospital she was able to change to this afternoon. Today we learned some more basic communication signs, as well as our days of the week, and how to sign the ABC's song! Eli is really enjoy the ABC's song.
On top of all of this I have a sick husband. He seems to have caught my cold and is coughing so much he is light headed and simply not feeling well. Fun times.
Today on facebook it gave me the whole 1 year ago today post. Wow. I year ago today Eli was in the PICU with his 1st round of pertussis. We had learned to suction and use O2 at high levels, we had learned advanced life support and how to keep him always positioned upright, keep his airway open, and how to use an ambu bag. 1 year ago today we went and picked up Ambu bags for his bedroom and the play area in our home. 1 year later Eli still has an ambu bag hanging next to an O2 tank in each room he is in primarily. It's such a strange thought to think about this. It's something you never expect to see in your home. Heck it's something that most see in a hospital and don't even realize that they see it. Yet here it sits right next to his push toy and bookshelf. I have those moments where it just hits me that this really is my life, and today was again one of those moments.
More in the next day or two. Promise.
Thursday, September 1, 2011
Quick Week to Date Overview
It's been a fairly busy week.
Monday ~ Little man had his in home speech and signing. He did decent, but was exhausted so didn't learn a lot of new things. We however learned all of our color signs. Ari had her hearing tests in the afternoon. She passed all of them! We were super relieved about that. Emily had her first day in strings. She was super excited. They didn't do much on monday, apparently most of the kids didn't have their instruments yet. Emily can't wait to get started with the violin. After school we met with Ben's new case managers and went over alot of his information and paperwork, preparing for his IEP mtg. We are really impressed with his managers here!
Tuesday ~ Eli had his in home ASL (signing) tutor. We learned alot. We learned all about basic beginning and ending conversation when we meet new people. Then we had Ben's IEP mtg. Alot of good information and a decent base plan in place. There are definitely still some concerns and everyone is working on a good plan to put in place. One of the biggest concerns is Ben's eating and drinking. He has lost over 2 lbs since starting school, as he is basically refusing to eat. He's been drinking maybe 5 or 6 sips of water a day. Everyone is working hard to get this all resolved. Later in the afternoon Eli had his 1st appt with the muscle and nerve clinic. We were super impressed with the doctor. He believes that it's mitochondrial myopathy. He believes that the seizures are causing a large part of the issue and that it's simply neurological degeneration ( his word not mine, because I don't like words like that). He's like, "obviously as you know with mitochondrial disease the brain alot of times will begin a degeneration process, and we are obviously seeing that with eli." Like always I just wanted to scream at him to stop saying those things. Those are the kind of statements that bother me the most. Back to point...He doesn't believe that botox, or casting, or surgeries are the best choice for Eli right now (neither do we), because he believes at this point none of them will help him to walk. He ordered a soft side helmet to help protect his head. When Eli gets tired he falls over frequently. The goal is to protect his head the best we can. We will continue to follow with him in clinic.
Wednesday ~ Eli had his PT. He did super awesome. She put him in a gate trainer and he loved it. This was his 1st time in one and we weren't sure what he would think. He took 2 tiny steps by himself! I was beyond excited! She's going to try him in it a few more times during therapy and if he continues to do well she will get one ordered for at home! Wed night began Eli's sleep study. We got here and they got him all hooked up. He fell asleep pretty quickly.
Which brings me to Thursday morning. This is where we still are. He was badly positioned so the sleep tech shifted him at about 3:45am. He struggled to get re situated and back to sleep. He's finally sleeping and i'm now wide awake. We leave for Wichita today and I'm ready to get away from it all for a few day!
Here are a few pictures.
Monday ~ Little man had his in home speech and signing. He did decent, but was exhausted so didn't learn a lot of new things. We however learned all of our color signs. Ari had her hearing tests in the afternoon. She passed all of them! We were super relieved about that. Emily had her first day in strings. She was super excited. They didn't do much on monday, apparently most of the kids didn't have their instruments yet. Emily can't wait to get started with the violin. After school we met with Ben's new case managers and went over alot of his information and paperwork, preparing for his IEP mtg. We are really impressed with his managers here!
Tuesday ~ Eli had his in home ASL (signing) tutor. We learned alot. We learned all about basic beginning and ending conversation when we meet new people. Then we had Ben's IEP mtg. Alot of good information and a decent base plan in place. There are definitely still some concerns and everyone is working on a good plan to put in place. One of the biggest concerns is Ben's eating and drinking. He has lost over 2 lbs since starting school, as he is basically refusing to eat. He's been drinking maybe 5 or 6 sips of water a day. Everyone is working hard to get this all resolved. Later in the afternoon Eli had his 1st appt with the muscle and nerve clinic. We were super impressed with the doctor. He believes that it's mitochondrial myopathy. He believes that the seizures are causing a large part of the issue and that it's simply neurological degeneration ( his word not mine, because I don't like words like that). He's like, "obviously as you know with mitochondrial disease the brain alot of times will begin a degeneration process, and we are obviously seeing that with eli." Like always I just wanted to scream at him to stop saying those things. Those are the kind of statements that bother me the most. Back to point...He doesn't believe that botox, or casting, or surgeries are the best choice for Eli right now (neither do we), because he believes at this point none of them will help him to walk. He ordered a soft side helmet to help protect his head. When Eli gets tired he falls over frequently. The goal is to protect his head the best we can. We will continue to follow with him in clinic.
Wednesday ~ Eli had his PT. He did super awesome. She put him in a gate trainer and he loved it. This was his 1st time in one and we weren't sure what he would think. He took 2 tiny steps by himself! I was beyond excited! She's going to try him in it a few more times during therapy and if he continues to do well she will get one ordered for at home! Wed night began Eli's sleep study. We got here and they got him all hooked up. He fell asleep pretty quickly.
Which brings me to Thursday morning. This is where we still are. He was badly positioned so the sleep tech shifted him at about 3:45am. He struggled to get re situated and back to sleep. He's finally sleeping and i'm now wide awake. We leave for Wichita today and I'm ready to get away from it all for a few day!
Here are a few pictures.
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| Eli's new soft side helmet |
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| Trying out the Gait Trainer at PT |
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| Ready to go to sleep for his sleep study |
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