I'm broken. I'm hurting. I feel dead inside.
I get up. Shower, dress, eat. Do what needs done all day every day. I feed everyone on time, I clean the house, I'm even eating myself now regularly. But I'm DOING nothing. I'm simply a shell of a person going thru the motions of each day.
I even laugh and smile sometimes, although it doesn't feel enough to actually warm me up inside.
I don't actually enjoy anything.
There are moments where I'm driving down the road and my mind won't stop. It just goes and goes. The vehicle is usually the time it goes to the darkest moments, the darkest places of that night. There is nothing to do in the van to make it stop. No movements possible. No speed cleaning a room. Nothing. The memories flood me.
Dreams or better called nightmares come sometimes. In one dream I stepped out to the nurses station on the inpatient floor to warm my dinner. When I got back into his room the nurse was tearing his room apart yelling frantically that she couldn't find Eli. His bed was there with his blanket and baby but empty. When I wake from these my mind is racing. Going thru all of the moments, the memories, in terrifying detail.
School events are the same way. Since Eli passed, Ari had her very first kindergarten music program, kindergarten graduation, Ben had a school program, Emily graduated elementary school (6th grade) and had a music program. It's painful so very painful. All I can think about is how much Eli loved going to these events. He loved roaming the halls of the kids school, interacting with the kids, enjoying his celebrity status there. (most of you probably remember the big school Mito awareness week last Sept that the kids put together for Eli.) He loved to wave at his siblings and clap at all the wrong and right times. No matter what, we did everything we could to take him to all the school events, for him and for his siblings. These times are almost impossible for me now, as the void feels HUGE at all these special family moments.
The first time we took the kids to Eli's grave we were laying back looking at the tree. The tree where Eli's mickey balloon got stuck on the day of his burial. Watching down over us all. The same tree that the next day no longer held the mickey balloon because it flew away. Ari asked why it's gone. Bob said that Eli got free and flew after after we all left the burial, after he knew we were ok. Ari looked up and said but daddy we will never be ok, Eli's gone. There was nothing we could say.
The young innocent 6 yr old who is wiser beyond anything she should ever have to be for 6 said what we were all thinking but to afraid to ever say out loud.
We will NEVER be ok.
I kept saying at the hospital that night that I felt as though I was dying with Eli that night. They promised me I wouldn't. As we were leaving the hospital they thought that I hadn't, they thought they were right. They saw "me" walking out the doors, thinking to themselves, see we said you wouldn't die, and you didn't. I know that they are wrong. I died with my son. He and I died in each others arms. There is no doubt in my mind that a piece of each of my family members died that night too, and myself completely. Eli was my entire world. There was nothing outside of that. He was me. I was him. Every moment was Eli and I. Every piece of my brain was wrapped up in his care and life, my hands were always busy keeping him alive, my feet moving from activity to activity, appt to appt, my heart and soul were so deeply bound with Eli that they simply can't go on. Every friend, acquaintance, activity, it was all Eli. He was my life.
I'm left feeling empty and alone and dead. I feel as though I have nothing left to give, yet I'm doing exactly what I'm supposed to be for everyone else. On the outside it looks just right, doing everything I need and should do.
I'm terrified for the day my kids are grown and on their own, as right now they are what keeps me busy. It isn't enough to keep me, ME, but it is enough to keep me busy. And right now busy is all I have left.
So in closing.
Yes Ari you're right. We will never be OK.
Friday, May 24, 2013
Monday, May 20, 2013
Video from Eli's visitation
This video was played at the visitation. We handed over our computer, and memory cards, and CD's and pictures to our amazing photographer friends and they created this masterpiece! My beautiful tiny boy!
Click for Video
Click for Video
Tuesday, May 14, 2013
3 Pictures
We have over 600 pictures from the evening, night, morning, and week to follow up to the visitation. At some point we will share more in a slideshow fashion but I'm not currently emotionally able to put one together. That being said there are 3 pictures that are my favorite. I'm not sure why. The raw emotion I remember from the time and was soooo clearly captured in the photos might be the reason. The bond that the 4 adults in these photos have is unbelievable.
Quick rundown of the players.
Me and Bob. obvious. Eli's parents.
Lauren. Eli's primary nurse. She has been his nurse for 1 1/2 yrs, working 40-60 hrs a week. Beyond that though she is our family. She was over almost daily and spent so much time with us.
Mike. This is Eli's primary doc. Sometimes I felt as though he and I talked more than me and my hubby. He would answer my calls morning, noon, night, evening, and weekend. He would meet me in the ER, he would call ahead to make things smoother. He spent countless hrs on the phone, email, fax for Eli. He grilled and prep residents for the chance that Eli might call in during "off hrs". He was our lifeline. When Eli coded the first time and they started intubating Mike was called and showed up VERY fast in his comfys and spent the entire night and morning by our side.
The 4 adults in these pictures were the pall bearers. For the last times we felt the weight, we carried Eli alone. It was us.
So here are the pictures. I'm sorry if these are hard to look at, but imagine living them?!
Quick rundown of the players.
Me and Bob. obvious. Eli's parents.
Lauren. Eli's primary nurse. She has been his nurse for 1 1/2 yrs, working 40-60 hrs a week. Beyond that though she is our family. She was over almost daily and spent so much time with us.
Mike. This is Eli's primary doc. Sometimes I felt as though he and I talked more than me and my hubby. He would answer my calls morning, noon, night, evening, and weekend. He would meet me in the ER, he would call ahead to make things smoother. He spent countless hrs on the phone, email, fax for Eli. He grilled and prep residents for the chance that Eli might call in during "off hrs". He was our lifeline. When Eli coded the first time and they started intubating Mike was called and showed up VERY fast in his comfys and spent the entire night and morning by our side.
The 4 adults in these pictures were the pall bearers. For the last times we felt the weight, we carried Eli alone. It was us.
So here are the pictures. I'm sorry if these are hard to look at, but imagine living them?!
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| Sunday April 28th 4:07am |
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| Sunday April 28th 4:08am as Mike gathered the strength to say those words and we all held our Hero |
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| Sunday April 28th 4:08am right after Mike said those words "Time of Death 4:08am" |
Tuesday, May 7, 2013
What happened??
This will be disorganized. things won't be spelled right. punctuation will be wrong. sentences will be wrong. i simply have to type the words. feeling may show so strongly at points and others may sound so numb. this is the best i can do now.
we were supposed to have more time. we weren't on hospice. this shouldn't be our story.
What happened? We are being asked that a lot and honestly we are asking that question ourselves. It's all a blur, it's emotions, fear, pain, torture, it's spiraling downward into oblivion.
Eli had surgery on Thursday April 25th at around 2:30pm. He had his tonsils and adenoids removed, tubes placed in his ears, and a bronchoscopy. The docs said it would all help and was a good idea. As I said previously I was concerned.
Eli came out of surgery with some increased O2 needs (normal after surgery), trouble keeping his blood sugar up (not quite normal but not holy cow out of normal), and some choking spells (which they expected from the increased secretions after surgery.)
They sent Eli home Friday April 26th around 6pm. The attending begged his primary doc to take over at home care. We got home and Eli had yet another round of choking around 7pm. He got situated and we got him to bed on his mattress upright in the middle of his room. Bob and I threw a futon mattress on the floor next to him keeping watch over him all night.
The next morning, Saturday April 26th Eli was still struggling. I called thru the paging system and finally got in touch with his primary doctor. It was agreed that it sounded like Eli had aspiration pneumonia, and it was decided to bring him in.
We got to the ER around 1pm. They did chest xrays and sure enough a touch of cloudy in his right lung. He was needing more and more O2 at this point. They decided to admit him to PICU around 2:30pm. They asked me if he had ever been intubated. I said yes of course. Bob got to the hospital around 3pm and we all got to PICU around 3:30pm. Eli's struggle continued to get worse. They put him on a high flow O2 mask.
This is where time starts to get blurry.
Around 5pm Eli had his first seizure of the night. Breathing was harder, his temp was up. His heart rate at this point was 170's and his resps around 70ish. They switched Eli to 100% O2. 3 more seizures followed.
They started BiPAP around 7pm. He continued to struggle.
Around 8pm we were holding him in bed and he had a huge seizure and stopped breathing. The nurse grabbed him and started bagging him. At this point they called his first code. Everyone swarmed. I lost it and collapsed in the hall.
They intubated Eli at this point. They couldn't get him on the vent. I watched the monitors for so long. His O2 level was around 6 for so long. His HR and resps a mess. This went on for around 1 hr. They couldn't get him onto the vent and he tanked even more every time they tried. They bagged him for so long.
Another chest xray. pneumonia getting worse.
Around 10pm the docs said he had a 90% chance of pulling thru.
He kept coding. They couldn't get him on the vent still. His O2 level hovered around 50-74.
They had him running on 10 or 11 IV machines at this point.
Around midnight on sunday april 28th the doctors wanted to try the hail mary vent. They were out of options. Eli had already coded maybe 3 or 4 times at this point. The team never getting him stable, never being able to leave his side.
another chest xray. pneumonia worse.
they tried the hail mary vent. the docs said they would give it 30 minutes. it didn't work.
another chest xray. our world ended. every drop of air was sucked out of us. we were crashing, falling, dying. the blow was like none other. Eli had ARDS...Acute Respiratory Distress Syndrome. It's fatal. Eli's lungs basically freaked out, the pneumonia causing them to attack themselves. The final chest xray that was less than 2 hrs before the last showed his lungs COMPLETELY white. At this point the docs said we had less than 5% chance.
At 1am Eli's primary doc (he was called hrs before and stayed with us the entire time) made the call. Bring the kids. The kids arrived around 2am.
We took each child in to see Eli. It was heart wrenching.
eli's primary doc (also the kids doctor) and the head of the hospice dept took the kids into a room and talked.
the kids had a 2nd PICU room next to eli's set up with toys and food and drinks and pillows and blankets. they were able to move about between their room and eli's room. the hospital had so many people there to help one on one with each child. allowing them to have special care and do as they needed.
At 2:30am bob and I were in the hall with Eli's primary doc. There is nothing more we can do. His body is shutting down. He isn't breathing. He was so swollen. kidneys not working. heart could stop at any moment. can't cause him this pain. DNR. DNR DNR. This is the words that were being said to us.
we were standing in the hall right outside his open door at 3am discussing signing a DNR when Eli went into a full code. He stopped breathing. His heart stopped. Everyone rushed. We heard the PICU doc yell for CPR. We rushed into the room saying no no no.
He grabbed us across the bed and said you have to say it. you know what this means. i kept screaming that i hadn't held my baby yet. they had never got him stable for us to hold him. he shook us saying you have to say it. Eli's primary doc was behind us holding us up. I looked at the PICU doc and screamed DNR STOP. As I did our kids screamed and ran into the room.
it was a flurry. the team ripped all the cords and monitors off of Eli. He was in my arm in milli seconds. they shoved us on the bed. bob and i on the bottom, eli on my chest and bobs, the kids piled on the bed on top of us.
i took the intubation tube from eli's mouth and threw it across the room. we took off the last few monitors. we turned on music...Josh Groban "Awake" we all sang.(this is the song that Josh Groban dedicated to Eli 2 yrs ago during his Wichita concert, and the song that we have since played for Eli hundreds of times.) we held him. we cried. oh did we cry. we did his footprints and his hand prints in clay. the kids loved on him and kissed him.
we stroked his beautiful hair. we held his hands. we kissed him.
the only people in the room were bob and i, the kids, lauren, cheryl (our good friend), Eli's primary doc, the hospital chaplain (a friend of ours)...everyone else had left. all the monitors were off. it was just us and our baby.
at 4:05am i looked at eli's primary doc and begged him to do it. knowing what he would say. knowing that eli had passed soooo long before. he listened to eli's back 4:06am. he listened to elis front 4:07am. he said those dreaded words at 4:08am while he, bob, lauren, and i held eli.
michaella and my parents arrived around 4:45am. we were still curled up with eli in bed.
around 5am lauren picked up eli while bob and i stood up. they brought us a basin of warm water and a huge stack of washcloths.
we used eli's soap and we all gathered around the bed and bathed him together. we used lotion, and did his tubie care. we brushed his hair. put on his socks and diaper and pj's and glasses.
all the while the hospital chaplain took photos of our time documenting the whole evening and morning.
we took family pictures. we said our goodbyes.
the moment it was time to leave jace lost it.
at this point we hadn't slept. we hadn't eaten. we had no idea what we were doing.
we all finally left the hospital together sometime after 6am and stood together in a circle in the parking garage crying.
so much happened during the hrs, days and week to follow but i can't go into it now. I'm worn out from simply typing the above.
we were supposed to have more time. we weren't on hospice. this shouldn't be our story.
What happened? We are being asked that a lot and honestly we are asking that question ourselves. It's all a blur, it's emotions, fear, pain, torture, it's spiraling downward into oblivion.
Eli had surgery on Thursday April 25th at around 2:30pm. He had his tonsils and adenoids removed, tubes placed in his ears, and a bronchoscopy. The docs said it would all help and was a good idea. As I said previously I was concerned.
Eli came out of surgery with some increased O2 needs (normal after surgery), trouble keeping his blood sugar up (not quite normal but not holy cow out of normal), and some choking spells (which they expected from the increased secretions after surgery.)
They sent Eli home Friday April 26th around 6pm. The attending begged his primary doc to take over at home care. We got home and Eli had yet another round of choking around 7pm. He got situated and we got him to bed on his mattress upright in the middle of his room. Bob and I threw a futon mattress on the floor next to him keeping watch over him all night.
The next morning, Saturday April 26th Eli was still struggling. I called thru the paging system and finally got in touch with his primary doctor. It was agreed that it sounded like Eli had aspiration pneumonia, and it was decided to bring him in.
We got to the ER around 1pm. They did chest xrays and sure enough a touch of cloudy in his right lung. He was needing more and more O2 at this point. They decided to admit him to PICU around 2:30pm. They asked me if he had ever been intubated. I said yes of course. Bob got to the hospital around 3pm and we all got to PICU around 3:30pm. Eli's struggle continued to get worse. They put him on a high flow O2 mask.
This is where time starts to get blurry.
Around 5pm Eli had his first seizure of the night. Breathing was harder, his temp was up. His heart rate at this point was 170's and his resps around 70ish. They switched Eli to 100% O2. 3 more seizures followed.
They started BiPAP around 7pm. He continued to struggle.
Around 8pm we were holding him in bed and he had a huge seizure and stopped breathing. The nurse grabbed him and started bagging him. At this point they called his first code. Everyone swarmed. I lost it and collapsed in the hall.
They intubated Eli at this point. They couldn't get him on the vent. I watched the monitors for so long. His O2 level was around 6 for so long. His HR and resps a mess. This went on for around 1 hr. They couldn't get him onto the vent and he tanked even more every time they tried. They bagged him for so long.
Another chest xray. pneumonia getting worse.
Around 10pm the docs said he had a 90% chance of pulling thru.
He kept coding. They couldn't get him on the vent still. His O2 level hovered around 50-74.
They had him running on 10 or 11 IV machines at this point.
Around midnight on sunday april 28th the doctors wanted to try the hail mary vent. They were out of options. Eli had already coded maybe 3 or 4 times at this point. The team never getting him stable, never being able to leave his side.
another chest xray. pneumonia worse.
they tried the hail mary vent. the docs said they would give it 30 minutes. it didn't work.
another chest xray. our world ended. every drop of air was sucked out of us. we were crashing, falling, dying. the blow was like none other. Eli had ARDS...Acute Respiratory Distress Syndrome. It's fatal. Eli's lungs basically freaked out, the pneumonia causing them to attack themselves. The final chest xray that was less than 2 hrs before the last showed his lungs COMPLETELY white. At this point the docs said we had less than 5% chance.
At 1am Eli's primary doc (he was called hrs before and stayed with us the entire time) made the call. Bring the kids. The kids arrived around 2am.
We took each child in to see Eli. It was heart wrenching.
eli's primary doc (also the kids doctor) and the head of the hospice dept took the kids into a room and talked.
the kids had a 2nd PICU room next to eli's set up with toys and food and drinks and pillows and blankets. they were able to move about between their room and eli's room. the hospital had so many people there to help one on one with each child. allowing them to have special care and do as they needed.
At 2:30am bob and I were in the hall with Eli's primary doc. There is nothing more we can do. His body is shutting down. He isn't breathing. He was so swollen. kidneys not working. heart could stop at any moment. can't cause him this pain. DNR. DNR DNR. This is the words that were being said to us.
we were standing in the hall right outside his open door at 3am discussing signing a DNR when Eli went into a full code. He stopped breathing. His heart stopped. Everyone rushed. We heard the PICU doc yell for CPR. We rushed into the room saying no no no.
He grabbed us across the bed and said you have to say it. you know what this means. i kept screaming that i hadn't held my baby yet. they had never got him stable for us to hold him. he shook us saying you have to say it. Eli's primary doc was behind us holding us up. I looked at the PICU doc and screamed DNR STOP. As I did our kids screamed and ran into the room.
it was a flurry. the team ripped all the cords and monitors off of Eli. He was in my arm in milli seconds. they shoved us on the bed. bob and i on the bottom, eli on my chest and bobs, the kids piled on the bed on top of us.
i took the intubation tube from eli's mouth and threw it across the room. we took off the last few monitors. we turned on music...Josh Groban "Awake" we all sang.(this is the song that Josh Groban dedicated to Eli 2 yrs ago during his Wichita concert, and the song that we have since played for Eli hundreds of times.) we held him. we cried. oh did we cry. we did his footprints and his hand prints in clay. the kids loved on him and kissed him.
we stroked his beautiful hair. we held his hands. we kissed him.
the only people in the room were bob and i, the kids, lauren, cheryl (our good friend), Eli's primary doc, the hospital chaplain (a friend of ours)...everyone else had left. all the monitors were off. it was just us and our baby.
at 4:05am i looked at eli's primary doc and begged him to do it. knowing what he would say. knowing that eli had passed soooo long before. he listened to eli's back 4:06am. he listened to elis front 4:07am. he said those dreaded words at 4:08am while he, bob, lauren, and i held eli.
michaella and my parents arrived around 4:45am. we were still curled up with eli in bed.
around 5am lauren picked up eli while bob and i stood up. they brought us a basin of warm water and a huge stack of washcloths.
we used eli's soap and we all gathered around the bed and bathed him together. we used lotion, and did his tubie care. we brushed his hair. put on his socks and diaper and pj's and glasses.
all the while the hospital chaplain took photos of our time documenting the whole evening and morning.
we took family pictures. we said our goodbyes.
the moment it was time to leave jace lost it.
at this point we hadn't slept. we hadn't eaten. we had no idea what we were doing.
we all finally left the hospital together sometime after 6am and stood together in a circle in the parking garage crying.
so much happened during the hrs, days and week to follow but i can't go into it now. I'm worn out from simply typing the above.
Wednesday, May 1, 2013
Obituary
http://dwjohnson.tributes.com/show/Elias-Eli-Richard-Tomkins-95718512
Eli's obituary can also be seen in the Wichita Eagle, Kansas City Star, and the Dubuque Telegraph Herold Today.
Eli's obituary can also be seen in the Wichita Eagle, Kansas City Star, and the Dubuque Telegraph Herold Today.
Monday, April 29, 2013
Arraingments
Public Viewing / Cupcake Social / Book Drive for donations in honor of Eli...
The only thing Eli ever ate was frosting that we snuck him at special times. He loved it!! As all who know Eli know books are his favorite thing and he owns atleast 5 books for every 1 toy! We have decided in leu of flowers to do a book drive. All of the books collected will be donated in Eli's name to the local hospital (KU) that took such amazing care of our family and our little man!
Friday May 3rd from 6pm to 8pm
D.W. Newcomer's Sons
Overland Park Chapel
11200 Metcalf Ave
Overland Park, Ks 66210
Funeral
Saturday May 4th at 10am
Shawnee Mission Unitarian Universalist Church
9400 Pflumm Rd
Lenexa, Ks 66215
Immediately following the service will be a procession to the burial service immediately followed by a balloon release graveside.
We are being asked often what we need. We can no longer keep up with all of the texts, emails, facebook msg, and posts. We are trying so hard but there are so many. They are definitely appreciated and please know that we are reading them as often as we can and that they are literally keeping us together at this point. It warms my heart to see the outpouring of love for our little man and to see how many lives he has touched. We feel so damn lucky to be able to have had the honor of caring for Eli these last 3 1/2 yrs.
So in answer to what we need. Meals and Money to cover the upcoming funeral and burial expenses.
If you are local you are more than welcome to drop them off. If you are far away gift cards (walmart, sams, hyvee) can be sent or paypal is also an available option.
Our door is always open right now. Company is always appreciated.
We would like as many people as want to attend Eli's funeral. We feel very honored that so many are asking for details so they can travel from near and far to be here to celebrate our warrior.
Again we are asking for book donations. This is what Eli loves the most and we feel the best way to carry on his legacy.
Our address is:
9407 W 103rd St
Overland Park, Ks 66212
913-744-5608
paypal address : eliasjourney@gmail.com
Please continue to pray, mediate, happy thoughts, virtual hugs, real hugs, and anything and everything are very much appreciated right now. We are in more pain that I can find the words to express.
Many are asking for the story of what happened. We will share that as we have always shared the rest of our journey. We have vowed to always be open and honest and we will. BUT currently being that open and honest is simply to painful and the words aren't there. Please know that we will but right now we need time to grieve. I feel as though I'm being swallowed up and that I will shrivel up and die alongside my baby.
Thank you and love to all!
Sunday, April 28, 2013
Unbearable Pain
I can't say much. The pain is to much and blocks out all of the words.
Eli passed away this morning at 4:08am. Our Warrior passed away in our arms...me, bob, emily, jace, ben, ari, lauren (his primary nurse), cheryl (a good family friend and eli's sign language tutor), Dr Lewis (eli's primary doc who is a good friend of ours, not just a doctor) with Lane (hospital chaplain and friend) by our side.
We will update more and the full extent of what happened but I simply can't do it right now.
Eli passed away this morning at 4:08am. Our Warrior passed away in our arms...me, bob, emily, jace, ben, ari, lauren (his primary nurse), cheryl (a good family friend and eli's sign language tutor), Dr Lewis (eli's primary doc who is a good friend of ours, not just a doctor) with Lane (hospital chaplain and friend) by our side.
We will update more and the full extent of what happened but I simply can't do it right now.
Tuesday, April 23, 2013
It's been awhile!
Life. It just keeps going and going.
So much has happened yet nothing completely pops to the front of my mind to tell you about the bulk of this last month.
It's been busy. As always. Something is always happening.
The kids are so busy with all of the end of the year school things.
Emily has had alot of concerts. She was again first chair violin at the most recent concert. We also had her middle school open house this last week. I can't believe she is already getting that old. She's excited but nervous about starting middle school. She has 2 more concerts before this year ends.
Jace is doing ok. Still struggling in school and definitely still struggling at home with his over sensitivity and aggression. He is loving the warmer weather and is like always outside as much as possible. He loves climbing trees and plays basketball alot on the new goal.
Benjamin is same as always. Getting in trouble at school for not focusing and doing his work. He's stimming alot at school and in class and has had some aggressive behavior. His excuse is retaliation. Definitely been having to work on him understanding that these things aren't ok. He loves being outside as well.
Ariana is good. She's still getting in trouble for talking constantly but does well other than that. She is reading so well and is even trying to write her own sentences, and sounding out and spelling the words herself. She loves to draw, especially princesses.
Bob and I? Busy. He's hardly home. I'm here all the time. I'm babysitting 2 little kiddos. One I have 3 days a week, the other 4 days a week. They keep me busy! Eli loves having 2 little friends here to interact and play with!
This past Sunday (21st) was my birthday. I spent the weekend in Wichita with one of my best friends. We went out Friday and Saturday night and I had so much fun feeling young and free! Of course waking up in the morning clearly reminded me that I'm not as young as I felt that nights before! :) I also got to visit with some friends and snuggle a brand new baby! It was a much needed break!
My littlest Eli. He's stable but struggling. I know that doesn't quite sound right to most, but that's the best I know to describe it. We have had alot of trouble still with med absorption. He's also been falling and running into things alot, and is currently covered in bruises. He's had some major allergy issues and is now on 4 separate meds for them. He is having surgery on Thursday. He's having a bronchoscopy, his tonsils and adenoids removed, nasal dilation and tubes placed in his ears. He also has a sty on his eye that has becoming infected so they may be removing it as well. This is the first surgery that I don't have a good feeling about. Something about it simply doesn't feel right. I can't pin what it is. His primary doc and I have talked at great length about it. We have discussed the doctors concerns, which is airway management and breathing issues. Also we have discussed bleeding risks. Apparently these surgeries tend to have alot of bleeding, which in itself isn't great BUT for a kid on blood thinners with a blood clotting disorder this is HUGE. We will be stopping his blood thinners tomorrow and he will not be able to resume them until surgical bleeding is completely managed. This puts Eli at a big risk of developing blood clots in his heart and around his central line. Eli had 3 of these in his heart right over 2 years ago and we didn't know if we were going to lose him then. Lastly his docs are a bit worried about pain management as these meds usually suppress his respiratory status which is dangerous after anesthesia, especially when we will be messing with his airway!
I'm sure you are now wondering why I'm NOT SURE what is making me so uncomfortable. You are probably thinking DUH the above list seems huge. It is huge, don't get me wrong. BUT with a kid like Eli we are always faced with a huge risk of things that could go wrong. As scary as the risks are they aren't technically any different than many of our normal risks. This IS the first time that we've done so much surgery by airway and our first major on blood thinners. But I just don't know.
I'm scared. I have an uncomfy feeling deep down inside and that scares me even more.
Eli's primary doc will be around the end of the week and weekend and has reassured me hundreds of times now that I can call him and the surgeon and team can call him at ANY point and he will be there. I know this is true and he's always done as he promises. But I'm still scared.
Eli will be admitted Wednesday evening and surgery is Thursday morning. I don't have specific times as the schedule is never finalized until the day before. Bob will be able to be up at the hospital the day of surgery. The kids will all go to school.
The rest of the world goes on as normal. Bob and I will spend the day sitting on the edge of our chairs jumping at every doctor and nurse entering the room, breathing only when our body has no choice, blinking as few times as possible, our heart stopping every time we hear the crackle of the page or a code called. Our kids will sit in school fidgety and anxious and wondering. They will go to the office asking for updates, begging the secretary to call us and ask if Eli's ok. They will rush off the bus and burst thru the front doors asking what happened. They will cry when they say goodbye to Eli before he heads to the hospital. Bob will go home Thursday evening to be with the kids and I will stay at the hospital, sitting vigil next to Eli's bed, watching his every breath and vital signs, keeping close eye on pain level and pushing nurses and docs when I need. It will be pure painful raw torture for our family. It's so strange to think for us that everyone else goes on. That the world doesn't actually stop, that time doesn't stand still. Everyone goes about their day just as they would any other day.
I hate surgery days. They are almost more than a mother of a special needs child can bear.
We will update as always. They may be short and brief, facebook obviously getting more detailed frequent updates simply because it's easier from my phone. Thoughts or prayers if you do are always appreciated and most definitely needed on Thursday! Also feel free to comment here on my blog. Comments do come thru me first simply to make sure they aren't spam but will always be published and are definitely read and very much appreciated!!!
So much has happened yet nothing completely pops to the front of my mind to tell you about the bulk of this last month.
It's been busy. As always. Something is always happening.
The kids are so busy with all of the end of the year school things.
Emily has had alot of concerts. She was again first chair violin at the most recent concert. We also had her middle school open house this last week. I can't believe she is already getting that old. She's excited but nervous about starting middle school. She has 2 more concerts before this year ends.
Jace is doing ok. Still struggling in school and definitely still struggling at home with his over sensitivity and aggression. He is loving the warmer weather and is like always outside as much as possible. He loves climbing trees and plays basketball alot on the new goal.
Benjamin is same as always. Getting in trouble at school for not focusing and doing his work. He's stimming alot at school and in class and has had some aggressive behavior. His excuse is retaliation. Definitely been having to work on him understanding that these things aren't ok. He loves being outside as well.
Ariana is good. She's still getting in trouble for talking constantly but does well other than that. She is reading so well and is even trying to write her own sentences, and sounding out and spelling the words herself. She loves to draw, especially princesses.
Bob and I? Busy. He's hardly home. I'm here all the time. I'm babysitting 2 little kiddos. One I have 3 days a week, the other 4 days a week. They keep me busy! Eli loves having 2 little friends here to interact and play with!
This past Sunday (21st) was my birthday. I spent the weekend in Wichita with one of my best friends. We went out Friday and Saturday night and I had so much fun feeling young and free! Of course waking up in the morning clearly reminded me that I'm not as young as I felt that nights before! :) I also got to visit with some friends and snuggle a brand new baby! It was a much needed break!
My littlest Eli. He's stable but struggling. I know that doesn't quite sound right to most, but that's the best I know to describe it. We have had alot of trouble still with med absorption. He's also been falling and running into things alot, and is currently covered in bruises. He's had some major allergy issues and is now on 4 separate meds for them. He is having surgery on Thursday. He's having a bronchoscopy, his tonsils and adenoids removed, nasal dilation and tubes placed in his ears. He also has a sty on his eye that has becoming infected so they may be removing it as well. This is the first surgery that I don't have a good feeling about. Something about it simply doesn't feel right. I can't pin what it is. His primary doc and I have talked at great length about it. We have discussed the doctors concerns, which is airway management and breathing issues. Also we have discussed bleeding risks. Apparently these surgeries tend to have alot of bleeding, which in itself isn't great BUT for a kid on blood thinners with a blood clotting disorder this is HUGE. We will be stopping his blood thinners tomorrow and he will not be able to resume them until surgical bleeding is completely managed. This puts Eli at a big risk of developing blood clots in his heart and around his central line. Eli had 3 of these in his heart right over 2 years ago and we didn't know if we were going to lose him then. Lastly his docs are a bit worried about pain management as these meds usually suppress his respiratory status which is dangerous after anesthesia, especially when we will be messing with his airway!
I'm sure you are now wondering why I'm NOT SURE what is making me so uncomfortable. You are probably thinking DUH the above list seems huge. It is huge, don't get me wrong. BUT with a kid like Eli we are always faced with a huge risk of things that could go wrong. As scary as the risks are they aren't technically any different than many of our normal risks. This IS the first time that we've done so much surgery by airway and our first major on blood thinners. But I just don't know.
I'm scared. I have an uncomfy feeling deep down inside and that scares me even more.
Eli's primary doc will be around the end of the week and weekend and has reassured me hundreds of times now that I can call him and the surgeon and team can call him at ANY point and he will be there. I know this is true and he's always done as he promises. But I'm still scared.
Eli will be admitted Wednesday evening and surgery is Thursday morning. I don't have specific times as the schedule is never finalized until the day before. Bob will be able to be up at the hospital the day of surgery. The kids will all go to school.
The rest of the world goes on as normal. Bob and I will spend the day sitting on the edge of our chairs jumping at every doctor and nurse entering the room, breathing only when our body has no choice, blinking as few times as possible, our heart stopping every time we hear the crackle of the page or a code called. Our kids will sit in school fidgety and anxious and wondering. They will go to the office asking for updates, begging the secretary to call us and ask if Eli's ok. They will rush off the bus and burst thru the front doors asking what happened. They will cry when they say goodbye to Eli before he heads to the hospital. Bob will go home Thursday evening to be with the kids and I will stay at the hospital, sitting vigil next to Eli's bed, watching his every breath and vital signs, keeping close eye on pain level and pushing nurses and docs when I need. It will be pure painful raw torture for our family. It's so strange to think for us that everyone else goes on. That the world doesn't actually stop, that time doesn't stand still. Everyone goes about their day just as they would any other day.
I hate surgery days. They are almost more than a mother of a special needs child can bear.
We will update as always. They may be short and brief, facebook obviously getting more detailed frequent updates simply because it's easier from my phone. Thoughts or prayers if you do are always appreciated and most definitely needed on Thursday! Also feel free to comment here on my blog. Comments do come thru me first simply to make sure they aren't spam but will always be published and are definitely read and very much appreciated!!!
Friday, March 22, 2013
Quick Updates
Super quick update.
I spoke with Eli's primary at length this morning.
1st. Thrush/Yeast. Nothing is working. We have been battling this for over 2 months. Right now his doc is stopping the latest meds for it and wants to see if it will come back full force or if it will not. If it does he's out of ideas and will be turning it over to infectious disease for help.
2nd. Heart. He has spoken with Eli's primary cardiologist. Babies are born with a fast HR and then as you get older it slows down to a normal pace. For some reason Eli's heart didn't get that memo. Long term tachycardia could be causing the SVT's and abnormal rhythms. They are hoping to get good info from all of these readings from the heart monitor. They are wondering if using beta-blockers would potentially help lower his heart rate, possibly stopping or atleast slowing down the occurances of these SVT's. He gave us more details on what he wants done when it occurs and at what point we are supposed to head to the hospital for emergency meds to make it stop.
3rd. Hydration. Eli is just not getting enough fluids. No matter how much we increase it just doesn't quite seem to ever be enough. His doc is hoping maybe he simply needs more fluids every day instead of trying to play catch up. He's dramatically increased his fluids to try and keep up with his needs. Hoping this doesn't put to much stress on the heart and kidneys but he simply needs more fluids.
4th. Poop. He wanted to know how the metamucil was going and I gave him all the details. It is definitely looking like we might not be on the right track still but we all agree to stay the course until atleast Monday.
It's been kind of a crappy day. Eli's fridge broke on the same day that they again increased his IV fluids. He gets 4 different bags of fluids a day, formula, and tons of medications and syringes and such that all require refrigeration. This is obviously a big issue that we are attempting to find a solution for.
We will all regroup and check back in on Monday. We will also be running a whole group of labs then as well. Like always we will update as we know more.
I spoke with Eli's primary at length this morning.
1st. Thrush/Yeast. Nothing is working. We have been battling this for over 2 months. Right now his doc is stopping the latest meds for it and wants to see if it will come back full force or if it will not. If it does he's out of ideas and will be turning it over to infectious disease for help.
2nd. Heart. He has spoken with Eli's primary cardiologist. Babies are born with a fast HR and then as you get older it slows down to a normal pace. For some reason Eli's heart didn't get that memo. Long term tachycardia could be causing the SVT's and abnormal rhythms. They are hoping to get good info from all of these readings from the heart monitor. They are wondering if using beta-blockers would potentially help lower his heart rate, possibly stopping or atleast slowing down the occurances of these SVT's. He gave us more details on what he wants done when it occurs and at what point we are supposed to head to the hospital for emergency meds to make it stop.
3rd. Hydration. Eli is just not getting enough fluids. No matter how much we increase it just doesn't quite seem to ever be enough. His doc is hoping maybe he simply needs more fluids every day instead of trying to play catch up. He's dramatically increased his fluids to try and keep up with his needs. Hoping this doesn't put to much stress on the heart and kidneys but he simply needs more fluids.
4th. Poop. He wanted to know how the metamucil was going and I gave him all the details. It is definitely looking like we might not be on the right track still but we all agree to stay the course until atleast Monday.
It's been kind of a crappy day. Eli's fridge broke on the same day that they again increased his IV fluids. He gets 4 different bags of fluids a day, formula, and tons of medications and syringes and such that all require refrigeration. This is obviously a big issue that we are attempting to find a solution for.
We will all regroup and check back in on Monday. We will also be running a whole group of labs then as well. Like always we will update as we know more.
Thursday, March 21, 2013
Heart
Eli is throwing us thru a constant revolving loop right now.
He met with his GI doc on Monday. We are back to multiple changes. He's taken Eli off his rotating antibiotics for the small bowel overgrowth. At this point they aren't controlling it and we are constantly running the risk of building up antibiotic resistances from using them so frequently. His intestines are also confusing the heck out of everyone. He can have 1 day of diarrhea with 5-8 pure liquid HUGE stools and then the next day be so backed up that his belly looks 8 months pregnant. He's still shedding intestinal lining and tons of mucus. His GI doc has decided to try putting Eli on metamucil. He's hoping that this might bulk things up but keep them moving. So far it's not working. His GI doc is confused about what his system is doing and he's not quite sure what to do differently.
Tuesday was a quieter day at home.
Wednesday proved hectic. We started the day with an appt to the endocrinologist. She is happy that he has grown 3 1/2 inches in 6 months. (we've never had growth like that). She is however concerned about his growth hormone levels and dosing. She's also wondering if there are some more thyroid issues involved. Running lots of labs. Then Eli's cardiac monitor went off more than 30 times. At one point in the afternoon he was bright red rashy and on fire hot. He happened to be on the pulse ox during this time and his heart rate went up to 230's and then back to 150's and back around. Upon listening by his nurse, she was able to hear skipping beats and his murmor going wild again. When it finally stopped and leveled back out the redness and heat went away.
Today Eli has been off all day, bumping into things, and falling over often. Sloppy days are always rough. When laying on his left side his heartrate is lower, on his back it's high. Very positional today.
We spoke with his cardio nurse and she has scheduled him with the lead cardiologist for next Thursday. They will be running another EKG and an ECHO. They are getting so many reading reports from the cardiac lab right now and are trying to keep up with reading all of them as they come in.
Right now we are just hanging on and hoping that this is nothing major. My brain keeps trying to override everything and tell me that it's ok. That goofy things can happen and go away, never to be seen again. The thing is I can't remember a time where something went away. Symptoms stay, meds don't get DC'ed without getting replaced, docs never switch from primary team to consult only, equipment is never temporary. Promises and speculations and thoughts and expectations NEVER happen. I remember all the words. All the feelings from the past. I can hear all the docs saying temporary...then months later saying we are sorry but this is life now. It's always changing. Life is always changing and it's not fair.
Can't 1 thing get better? Can't life improve? Can't my little warrior get a day off?? Can't I fight these battles for him just once letting him simply be a kid??
We are worried. We are unsure what's happening. We hear the doctors speculations and thoughts. There were 2 thoughts going into this on the first day a week or so again when he had his 1st known SVT's. Those were A. It's a 1 time thing, a fluke OR B. It's Mito. They thought it's possible that the mitochondria are breaking down and causing road blocks in his heart. (This is also what they have already wondered about occuring in his brain.) The first day the moment I heard these I tried to will myself to believe that "A" was possible. That was the reason for the SVT's that day. But my inner heart and soul felt that it wasn't so.
Here we are a week or so later and we now know beyond a shadow of a doubt that it's not a 1 time fluke. It's our new life. I don't want a new life. I want to go back. Back to 17 weeks of pregnancy. Back when I would lay there feeling the flutters of my little one growing in my belly. Back when I rubbed my belly imagining raising my little one. Back before the 18 week ultrasound when our world began to crumble. I want our old life. Our innocent healthy life. Back when the hardest thing was picking out the perfect baby names. I don't want this. I don't want the names of medications and diseases and doctors and protocols to be the things constantly filling my waking thoughts.
I'm terrified. Heart progresssion. I can't go there. I can't go down that path.
We will be talking with his palliative care doctor and his primary care doctor more tomorrow and hoping to get some basic answers before cardio next week. Please keep our little guy in your thoughts, and our family too. This isn't the path we want to even be glancing down. Not now, not ever.
We will update as we know more.
(In other less important news I seem to have picked up a cold and UTI. The kids are possibly getting the start of my cold. Spring break is winding down and the kids are back to school on Tuesday.)
He met with his GI doc on Monday. We are back to multiple changes. He's taken Eli off his rotating antibiotics for the small bowel overgrowth. At this point they aren't controlling it and we are constantly running the risk of building up antibiotic resistances from using them so frequently. His intestines are also confusing the heck out of everyone. He can have 1 day of diarrhea with 5-8 pure liquid HUGE stools and then the next day be so backed up that his belly looks 8 months pregnant. He's still shedding intestinal lining and tons of mucus. His GI doc has decided to try putting Eli on metamucil. He's hoping that this might bulk things up but keep them moving. So far it's not working. His GI doc is confused about what his system is doing and he's not quite sure what to do differently.
Tuesday was a quieter day at home.
Wednesday proved hectic. We started the day with an appt to the endocrinologist. She is happy that he has grown 3 1/2 inches in 6 months. (we've never had growth like that). She is however concerned about his growth hormone levels and dosing. She's also wondering if there are some more thyroid issues involved. Running lots of labs. Then Eli's cardiac monitor went off more than 30 times. At one point in the afternoon he was bright red rashy and on fire hot. He happened to be on the pulse ox during this time and his heart rate went up to 230's and then back to 150's and back around. Upon listening by his nurse, she was able to hear skipping beats and his murmor going wild again. When it finally stopped and leveled back out the redness and heat went away.
Today Eli has been off all day, bumping into things, and falling over often. Sloppy days are always rough. When laying on his left side his heartrate is lower, on his back it's high. Very positional today.
We spoke with his cardio nurse and she has scheduled him with the lead cardiologist for next Thursday. They will be running another EKG and an ECHO. They are getting so many reading reports from the cardiac lab right now and are trying to keep up with reading all of them as they come in.
Right now we are just hanging on and hoping that this is nothing major. My brain keeps trying to override everything and tell me that it's ok. That goofy things can happen and go away, never to be seen again. The thing is I can't remember a time where something went away. Symptoms stay, meds don't get DC'ed without getting replaced, docs never switch from primary team to consult only, equipment is never temporary. Promises and speculations and thoughts and expectations NEVER happen. I remember all the words. All the feelings from the past. I can hear all the docs saying temporary...then months later saying we are sorry but this is life now. It's always changing. Life is always changing and it's not fair.
Can't 1 thing get better? Can't life improve? Can't my little warrior get a day off?? Can't I fight these battles for him just once letting him simply be a kid??
We are worried. We are unsure what's happening. We hear the doctors speculations and thoughts. There were 2 thoughts going into this on the first day a week or so again when he had his 1st known SVT's. Those were A. It's a 1 time thing, a fluke OR B. It's Mito. They thought it's possible that the mitochondria are breaking down and causing road blocks in his heart. (This is also what they have already wondered about occuring in his brain.) The first day the moment I heard these I tried to will myself to believe that "A" was possible. That was the reason for the SVT's that day. But my inner heart and soul felt that it wasn't so.
Here we are a week or so later and we now know beyond a shadow of a doubt that it's not a 1 time fluke. It's our new life. I don't want a new life. I want to go back. Back to 17 weeks of pregnancy. Back when I would lay there feeling the flutters of my little one growing in my belly. Back when I rubbed my belly imagining raising my little one. Back before the 18 week ultrasound when our world began to crumble. I want our old life. Our innocent healthy life. Back when the hardest thing was picking out the perfect baby names. I don't want this. I don't want the names of medications and diseases and doctors and protocols to be the things constantly filling my waking thoughts.
I'm terrified. Heart progresssion. I can't go there. I can't go down that path.
We will be talking with his palliative care doctor and his primary care doctor more tomorrow and hoping to get some basic answers before cardio next week. Please keep our little guy in your thoughts, and our family too. This isn't the path we want to even be glancing down. Not now, not ever.
We will update as we know more.
(In other less important news I seem to have picked up a cold and UTI. The kids are possibly getting the start of my cold. Spring break is winding down and the kids are back to school on Tuesday.)
Friday, March 15, 2013
Eli's outside adventure!
Here are some pictures and videos of Eli getting to play outside today. The weather was gorgeous and he spent almost the entire day outside. The pictures and the first 2 videos are in our backyard. The last videos are at the school playground this evening.
Featured in these is Eli, Lauren (his primary nurse), Michaella (Ben's respite worker) and of course Daddy!
Enjoy!
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| This is Eli's newest addition. It's his cardiac halter event monitor. He will wear this continuously for atleast a month. |
Wednesday, March 13, 2013
What a Day!!!
Eli woke up this morning beeping. Bob went in assuming we just simply needed to reposition his pulse ox cord. Not the case. Eli's HR was bouncing up and down between 110 and 246. It did this repeatedly for 20 minutes. We of course immediately called his doc. By this point his breathing was a bit goofy and his heart murmor was a mess.
He had us immediately bring Eli into urgent care. Between the HR and the fact that pee and poop have been few and far between since Sunday he was concerned.
So we get there and he gets a KUB (belly xray) and it shows he's backed up. Then we meet with the doctor. They order an EKG and a chest xray. EKG looks ok at this point.
They ran labs but we haven't gotten them back yet. They spoke with Eli's GI doc and his cardiologist. They decided with his heart history and Mito in general that they will be having Eli do cardiac halter event monitoring for a month. He will have to wear it continuously. In the mean time they are setting him up with his cardiologist for a followup and ECHO.
So basically we know that Eli is having SVT's, but we don't know why. They are concerned that the mitochondria could be breaking down and causing obstructions in his heart.
This changes alot currently in our life. Eli's surgery will again need to be postponed as he is no longer cleared cardiac wise. Also this again throws another heart component into our life. We aren't sure if this is another progression with Mito or just a one time "fluke".
We were at the hospital for almost 6 hrs. So now we are exhausted and my mind is spinning with all of the new info. I will get more info up as we know more.
His primary doc just called. The chest xray and labs are officially back. Eli has pneumonia, lower left lobe. So they are starting Eli on antibiotics. Eli is still sleeping as he's exhausted from the day. Now to figure out the heart.
He had us immediately bring Eli into urgent care. Between the HR and the fact that pee and poop have been few and far between since Sunday he was concerned.
So we get there and he gets a KUB (belly xray) and it shows he's backed up. Then we meet with the doctor. They order an EKG and a chest xray. EKG looks ok at this point.
They ran labs but we haven't gotten them back yet. They spoke with Eli's GI doc and his cardiologist. They decided with his heart history and Mito in general that they will be having Eli do cardiac halter event monitoring for a month. He will have to wear it continuously. In the mean time they are setting him up with his cardiologist for a followup and ECHO.
So basically we know that Eli is having SVT's, but we don't know why. They are concerned that the mitochondria could be breaking down and causing obstructions in his heart.
This changes alot currently in our life. Eli's surgery will again need to be postponed as he is no longer cleared cardiac wise. Also this again throws another heart component into our life. We aren't sure if this is another progression with Mito or just a one time "fluke".
We were at the hospital for almost 6 hrs. So now we are exhausted and my mind is spinning with all of the new info. I will get more info up as we know more.
His primary doc just called. The chest xray and labs are officially back. Eli has pneumonia, lower left lobe. So they are starting Eli on antibiotics. Eli is still sleeping as he's exhausted from the day. Now to figure out the heart.
Saturday, March 2, 2013
Our "Set"
Sometimes people think that being a parent of a special needs kiddo is glamarous and exciting and always busy. They picture it like a TV show "Set" with alarms beeping and people running around with IV's and syringes and medication and such. The truth is sometimes it is like that BUT most of the time it's not. Our life is like any other...sometimes even boring.
So here's what I've done?!
Wanna see a sneak peak inside of our special needs family life on Saturday March 2nd at 5:30pm???
I know my dear sweet hubby isn't in any of these pics but he isn't here right now. Sad times!
Wishing your life was this exciting too?! Like I said there are definitely moments of our life that are beyond busy and hectic and frantic. Where sometimes it looks like the medical TV shows. My complaint is that we don't have anyone that comes and cleans up the set after the fact?! Totally have to look into getting those kind of people! I would love it if they stocked the set too and made it all pretty and perfect and everything at my finger tips! AMAZING!
Here's to hoping that everyone is having the same type of boring, mundane, NORMAL, HEALTHY saturday evening that our family is!
So here's what I've done?!
Wanna see a sneak peak inside of our special needs family life on Saturday March 2nd at 5:30pm???
I know my dear sweet hubby isn't in any of these pics but he isn't here right now. Sad times!
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| Eli being incredibly ornery in the play room. He's finally figured out how to climb up there but is a bit unsure about always sliding down the slide by himself. |
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| A close-up of his ridiculously beautiful little face!!! |
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| Ariana caught NOT cleaning her room. |
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| Ariana with her NOT clean room. She's been cleaning for 9 1/2 hrs so far. She is clearly not done!! |
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| Benjamin sound asleep. He was watching Flicka for the 2nd time today but apparently was more interested in napping! |
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| Benjamin in his favorite PJ's. He's way to big for them and they are oh so worn out but he refuses to get rid of them and if he's not in school he LIVES in them! |
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| Jace actually still awake for Flicka! Cuddled up under the favorite blanket in the house. |
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| His adorable face and the remnants of his sore lips from this last round of cold. The cold is always so brutal on his face. |
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| My preteen compete with her unmade bed, Bieber posters, and Enter at your own risk sign! |
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| watching who knows what show on her kindle. She's to old to hang out with us anymore! :) |
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| Mom finishing up the dinner that Lauren and I started. Lauren and I made homemade gnocchi and now mom is using that to make gnocchi mac and cheese! |
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| Lauren partly watching Flicka with the boys and helping Eli up and down the slide. She's on her 6th day straight of work so she's clearly getting sleepy. On the plus side she and I did curl up today and watch our newest episodes of "Chicago Fire" and "New Girl" while Eli napped! |
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| Lastly ME! Don't I look amazing. Bummy clothes, hair a mess and not a drop of makeup. Glamourous huh? Just like all the TV mom's! :) |
Here's to hoping that everyone is having the same type of boring, mundane, NORMAL, HEALTHY saturday evening that our family is!
Thursday, February 28, 2013
Hard Truths
Raising the family that I am my mind is ALWAYS going. The things that go on in my life and in my home are immense, intense, overwhelming, terrifying, painful, joyous, awe-inspiring, uplifting, and amazing. I'm sure I could fill this entire post with words to describe our life. I could simply open a dictionary and could make 2/3 of it perfectly describe a day in our home, some days possibly even more than 2/3!
The problem is do you get our life? Do you understand what I ACTUALLY mean when I say those words. You get what those words would mean to you from your life experience but you don't GET what they mean for our life experience. And that's ok. I don't want it to sound like that's not ok, or that I am upset with you not GETTING it for my family's use of the word. That's normal.
The problem is though people need to GET what it means to be living with a rare disease, what it means for our son, for me, for our family. Other special needs families need to know that they aren't alone in their thoughts and feelings. Their extended families need to know how to support them, and talk to them, help them and understand them. Their friends, schools, servers at restaurants, cashiers at the stores, and community as a whole need to GET what it's like to live this special life day in and day out.
Sometimes I think those of us in the special needs community only share certain things. We talk medical with the best of them. We can discuss syringes, extensions, curly tubing, swab caps, CADD prizm's, joeys, infinities, medications, supplements, weight, doctors, testing, drainage and last but VERY not least POOP with great ease and detail for hrs. But the moment it comes to talking about our fears and thoughts and dreams and guilt we lock down and keep it all inside. Whispering behind closed doors with our spouses (some not even able to do that) about all of these things, crying silently in the shower keeping it all inside. Then we hit facebook in the morning, with detailed facts about our kiddos night and day and appts and phone calls. Don't get me wrong we do talk some about our fears and thoughts, especially when we are faced with a "member of our group" being placed on hospice or passing away. But the thoughts are there for us, they are real for us EVERY day.
Sometimes I wonder if I'm the only one who thinks about it? Am I the only one who cries for what is to come? Are we the only ones to sit up late at night talking about it, discussing it, saying aloud the what if's and what will we do's? Now years into this life I KNOW that I'm not, but still it's such a quiet part of our community.
Heck as I re-read what I have already written I see that I continue to use the words "it" to replace, hospice, death, progression, funerals, burial, passing, pain, torture, emptiness. Even typing this post about how we avoid these topics, I continue to avoid the words.
My conclusion on why we do this? It's scary as hell. It's painful. We are not at the point of hospice. We are not specifically planning for Eli's death. We have talked about our wants and desires for that point of his life. We know what the road we are on leads to. We have thought multiple times that we were going to lose Eli already during these last few years. We aren't to the point and the pain is so huge for us now that I can't even imagine the pain when we are there. Some times when the talks come up with the docs and there are brief mentions of what's to come the pain is so real for me that I can't breathe. That the world feels as though it's crumbling in. So I get how painful it is for us to talk about it. How much it hurts to say the things that are on our mind and in our hearts.
Sometimes I feel guilty to talk about these fears and thoughts. There are families out there whose kids are on hospice now, whose children have already passed away and earned their wings. My fears and thoughts seem so small and trivial and unfair compared to the pain they are living with. My child is still here with me. As sick as he may be, even on his worst days he's still here. I can reach out and touch him and hold him, I can hear him breathing, I can hear the clicking and swishing and bubbling and beeping of all the machines keeping him alive. I never want my pain to be compared to theirs. For I can't imagine their pain, I don't want to imagine their pain. I have to remind myself that as similar as all of our journeys may be at points, as much as we all support each other and try to walk these lonely roads together, that our stories are still very different and our feelings can all occur independent of each others journeys. Maybe this doesn't make sense to everyone. But to me this all makes perfect sense, and I know it will to so many of you out there. I guess what I'm saying is I vow to be more open about my thoughts, feelings, life, fears and hopes. I hope others can do the same. Special needs families tend to feel very alone and isolated as it is..Then we keep so many of these things inside of us and don't open up to each other easily and share our stories with each other. Lets not make each other feel so alone. Lets not be left questioning "am I the only one" Let's not make new moms and dads and families feel as though they are alone in their journeys. I vow to you guys that I will take the leap. I'll share the good, the bad, the hopes, the fears, the thoughts, the dreams, and the nightmares. I have HOPE. I have hope for myself, my family, my little warrior, and I have HOPE in our community! I love you guys more than words can explain. I don't know where we would be without each other.
So you may be thinking, great plan Heather, makes perfect sense and I think it's a good idea....get to it. I will.
What's going on with our family? That's quite the question.
Emily ~ She threatened to kill herself (she told her friends AT school and the school psychologist called us) and we ended up having to take her thru the ER and then she was admitted overnight to a children's mental health home. She's stressed about falling behind in school and the pressure of all of that. She's falling behind because she refuses to do her school work anymore and if she does do it then she forgets to turn it in or loses it. Her test grades are perfect but she doesn't want to do any of the extras. She practices her violin but never turns in her study sheets resulting in an F. She spends as much of her time as she can watching her TV shows or listening to music. If she doesn't have music then she can barely function. She is in love with every boy she meets and it's a big struggle. She doesn't want to speak to us, or anyone else for that matter. She does stay busy with choir and violin and such, but she's struggling more than most would know.
Jace ~ He's out of control. His mood swings have escalated. The docs believe he has a mood stabilization disorder, basically he's to young to label him as bi-polar so they have fancier terms now. They can't get him on any type of meds that help. He's failing in school and no matter how the info is presented he can't seem to grasp it easily. They are doing further testing at school as he definitely seems to be having a big learning issue. He's outbursts have gotten to the point where it takes 2 adults to physically control him. Last week him punched bob, kicked my mom and fought a sibling. Yesterday night we had a huge blow up over him taking a shower and he tried to slam a glass shower door on Bob. I ended up getting hit by the shower door above my eye (I now have a knot and a bruise) and this blow caused my head to hit the cabinet behind me. This was the first time hitting my head since my surgery and boy it felt horrible. We have no idea what to do with Jace and nobody has been able to figure something out.
Benjamin ~ He is all over the place. He refuses to participate in class and never does ANY of his school work. His teacher can't get him to focus or do his work. Today she had him spend 2 hrs working on 1 worksheet and he only got 3 problems done. He no longer wants to hug anyone and hates kisses or any affection. He throws random huge tantrums that can last from minutes to hours. He obsesses over things to the point where the whole house shuts down until the missing item is found or his problem is resolved.
Ariana ~ She picks at her feet and belly button to the point of causing herself pain and medical problems. They have tried to wean her off her meds for overactive bladder and this means running to the bathroom sometimes 15 times an hr. Makes for fun times at school and in public. She's doing amazing academically in school, but can't keep focused and keep her mouth closed during class to save her life. She's obsessed with death and loves to talk and plan and ask questions about it all the time. She's stubborn as a mule and refuses to do anything, she will spend 4 days cleaning her room.
Elias ~ My little man. He's mostly stable right now as long as you don't care about him shedding intestinal lining, pooping out full clumps of medication, grinding his teeth from possible pain, turning bright red and sweating profusely and having goofy labs that nobody can quite figure out. He's also having eye issues and we are working to get his glasses and lenses changed out to see if that helps him some. We met with his ENT today and we are a GO for surgery. Eli will be having his tonsils and adenoids removed, tubes in his ears, possible nasal dilation, and a bronchoscopy. I'm beyond terrified for how this surgery will go. Pain management, airway protection, and bleeding control are big concerns at this point. His surgeon is adjusting how they usually do this surgery to try to cut down on some of the issues, BUT that means a longer surgery which means longer intubation and more anesthesia. Also because of the nature of the surgeries Eli will need to be off his blood thinners for 10-14 days after surgery. That is terrify to think about.
Bob and I ~ It's a day at a time. Sometimes hour by hour. My surgery recovery is going pretty well. I'm doing more than I probably should because it's almost impossible not to in a house this busy. This has resulted in sore muscles and daily headaches. I'm just trying to get to a point in this recovery where I can almost be myself again, but that's not looking like it's going to happen. The lower part of my skull and neck are very sore and still hurting quite a bit. The middle and upper section of my head are so numb I can barely feel when they are touched. Which makes getting hit in the head apparently so much worse, because I didn't realize how bad it was until it really was hurting. Sleep is what I want to do, but that only happens at night now, naps haven't happened for almost 2 weeks. It's nobody's fault, it's just life around here. My mom leaves on March 10th so after 2 months it will be a big adjustment trying to keep up with it all around here.
So you say WOW that's alot of info. It is. It's the whole story. Not just the sugar fluff. Don't get me wrong there is lots of sugar fluff.
Ari is calling Bob "Dad" consistently and it's so adorable. She flutters her big eyes at him and his heart melts. Her drawing has gotten so amazing and she's very talented.
Ben is at times so adorable and loving and once in a while will just walk up and climb into my lap. Sometimes he will go to Eli and give him hugs and play with him without any prompting.
Jace can be the most loving helpful kid ever if he wants to be. He is amazing with Eli and their relationship is so fun to watch.
Emily is getting so good at the violin and we can really hear her progress. Her love for music is blossoming and she can be heard singing thru the house.
Eli is learning how to pick up his toys and loves to help with laundry. He's learning how to do puzzles and really enjoys them.
Laughter can be heard often thru our home.
But we have real fears. HUGE terrifying fears that grip at my heart. I'm terrified for every illness with Eli. This upcoming surgery. The things that could go wrong in the blink of an eye. The thoughts of what is to come. The guilt over missing 3 hrs with Eli if I run to the store. The laying awake at night listening to make sure that I can hear him breathing. The fears are all there and they never leave. I look at Eli and I'm terrified for what lies before us, how long is left? Could this be the last day, week? Could this be the last time we hear that laugh or see that skill? Progressive disorders are rough as it will get worse, yet nobody knows when and how. Life can change in the blink of an eye...and not only CAN it change but it DOES change.
I'm terrified for who and what I'll be when this journey with Eli comes to a close. I am so isolated from life and friends and family and the world. I am Eli, I am an extension of him. I feel as though we are attached by an invisible line that keeps us always close. His information is constantly running thru my head ready to give to the first doctor or nurse who needs it. I'm a vital piece of his medical equipment. Every moment of my life is consumed with caring for him. I am a shell of a person, I am soley Eli's caretaker. I love every moment of it, but I'm terrified for when that is no longer my job. I'm exhausted.
For now I'm exhausted. This has been quite the mental and emotional post.
***My final disclaimer. All comments left must be approved by me first before posting. I will not post anything that is inappropriate or threatening. Also keep in mind that I have a tracker on the blog***
The problem is do you get our life? Do you understand what I ACTUALLY mean when I say those words. You get what those words would mean to you from your life experience but you don't GET what they mean for our life experience. And that's ok. I don't want it to sound like that's not ok, or that I am upset with you not GETTING it for my family's use of the word. That's normal.
The problem is though people need to GET what it means to be living with a rare disease, what it means for our son, for me, for our family. Other special needs families need to know that they aren't alone in their thoughts and feelings. Their extended families need to know how to support them, and talk to them, help them and understand them. Their friends, schools, servers at restaurants, cashiers at the stores, and community as a whole need to GET what it's like to live this special life day in and day out.
Sometimes I think those of us in the special needs community only share certain things. We talk medical with the best of them. We can discuss syringes, extensions, curly tubing, swab caps, CADD prizm's, joeys, infinities, medications, supplements, weight, doctors, testing, drainage and last but VERY not least POOP with great ease and detail for hrs. But the moment it comes to talking about our fears and thoughts and dreams and guilt we lock down and keep it all inside. Whispering behind closed doors with our spouses (some not even able to do that) about all of these things, crying silently in the shower keeping it all inside. Then we hit facebook in the morning, with detailed facts about our kiddos night and day and appts and phone calls. Don't get me wrong we do talk some about our fears and thoughts, especially when we are faced with a "member of our group" being placed on hospice or passing away. But the thoughts are there for us, they are real for us EVERY day.
Sometimes I wonder if I'm the only one who thinks about it? Am I the only one who cries for what is to come? Are we the only ones to sit up late at night talking about it, discussing it, saying aloud the what if's and what will we do's? Now years into this life I KNOW that I'm not, but still it's such a quiet part of our community.
Heck as I re-read what I have already written I see that I continue to use the words "it" to replace, hospice, death, progression, funerals, burial, passing, pain, torture, emptiness. Even typing this post about how we avoid these topics, I continue to avoid the words.
My conclusion on why we do this? It's scary as hell. It's painful. We are not at the point of hospice. We are not specifically planning for Eli's death. We have talked about our wants and desires for that point of his life. We know what the road we are on leads to. We have thought multiple times that we were going to lose Eli already during these last few years. We aren't to the point and the pain is so huge for us now that I can't even imagine the pain when we are there. Some times when the talks come up with the docs and there are brief mentions of what's to come the pain is so real for me that I can't breathe. That the world feels as though it's crumbling in. So I get how painful it is for us to talk about it. How much it hurts to say the things that are on our mind and in our hearts.
Sometimes I feel guilty to talk about these fears and thoughts. There are families out there whose kids are on hospice now, whose children have already passed away and earned their wings. My fears and thoughts seem so small and trivial and unfair compared to the pain they are living with. My child is still here with me. As sick as he may be, even on his worst days he's still here. I can reach out and touch him and hold him, I can hear him breathing, I can hear the clicking and swishing and bubbling and beeping of all the machines keeping him alive. I never want my pain to be compared to theirs. For I can't imagine their pain, I don't want to imagine their pain. I have to remind myself that as similar as all of our journeys may be at points, as much as we all support each other and try to walk these lonely roads together, that our stories are still very different and our feelings can all occur independent of each others journeys. Maybe this doesn't make sense to everyone. But to me this all makes perfect sense, and I know it will to so many of you out there. I guess what I'm saying is I vow to be more open about my thoughts, feelings, life, fears and hopes. I hope others can do the same. Special needs families tend to feel very alone and isolated as it is..Then we keep so many of these things inside of us and don't open up to each other easily and share our stories with each other. Lets not make each other feel so alone. Lets not be left questioning "am I the only one" Let's not make new moms and dads and families feel as though they are alone in their journeys. I vow to you guys that I will take the leap. I'll share the good, the bad, the hopes, the fears, the thoughts, the dreams, and the nightmares. I have HOPE. I have hope for myself, my family, my little warrior, and I have HOPE in our community! I love you guys more than words can explain. I don't know where we would be without each other.
So you may be thinking, great plan Heather, makes perfect sense and I think it's a good idea....get to it. I will.
What's going on with our family? That's quite the question.
Emily ~ She threatened to kill herself (she told her friends AT school and the school psychologist called us) and we ended up having to take her thru the ER and then she was admitted overnight to a children's mental health home. She's stressed about falling behind in school and the pressure of all of that. She's falling behind because she refuses to do her school work anymore and if she does do it then she forgets to turn it in or loses it. Her test grades are perfect but she doesn't want to do any of the extras. She practices her violin but never turns in her study sheets resulting in an F. She spends as much of her time as she can watching her TV shows or listening to music. If she doesn't have music then she can barely function. She is in love with every boy she meets and it's a big struggle. She doesn't want to speak to us, or anyone else for that matter. She does stay busy with choir and violin and such, but she's struggling more than most would know.
Jace ~ He's out of control. His mood swings have escalated. The docs believe he has a mood stabilization disorder, basically he's to young to label him as bi-polar so they have fancier terms now. They can't get him on any type of meds that help. He's failing in school and no matter how the info is presented he can't seem to grasp it easily. They are doing further testing at school as he definitely seems to be having a big learning issue. He's outbursts have gotten to the point where it takes 2 adults to physically control him. Last week him punched bob, kicked my mom and fought a sibling. Yesterday night we had a huge blow up over him taking a shower and he tried to slam a glass shower door on Bob. I ended up getting hit by the shower door above my eye (I now have a knot and a bruise) and this blow caused my head to hit the cabinet behind me. This was the first time hitting my head since my surgery and boy it felt horrible. We have no idea what to do with Jace and nobody has been able to figure something out.
Benjamin ~ He is all over the place. He refuses to participate in class and never does ANY of his school work. His teacher can't get him to focus or do his work. Today she had him spend 2 hrs working on 1 worksheet and he only got 3 problems done. He no longer wants to hug anyone and hates kisses or any affection. He throws random huge tantrums that can last from minutes to hours. He obsesses over things to the point where the whole house shuts down until the missing item is found or his problem is resolved.
Ariana ~ She picks at her feet and belly button to the point of causing herself pain and medical problems. They have tried to wean her off her meds for overactive bladder and this means running to the bathroom sometimes 15 times an hr. Makes for fun times at school and in public. She's doing amazing academically in school, but can't keep focused and keep her mouth closed during class to save her life. She's obsessed with death and loves to talk and plan and ask questions about it all the time. She's stubborn as a mule and refuses to do anything, she will spend 4 days cleaning her room.
Elias ~ My little man. He's mostly stable right now as long as you don't care about him shedding intestinal lining, pooping out full clumps of medication, grinding his teeth from possible pain, turning bright red and sweating profusely and having goofy labs that nobody can quite figure out. He's also having eye issues and we are working to get his glasses and lenses changed out to see if that helps him some. We met with his ENT today and we are a GO for surgery. Eli will be having his tonsils and adenoids removed, tubes in his ears, possible nasal dilation, and a bronchoscopy. I'm beyond terrified for how this surgery will go. Pain management, airway protection, and bleeding control are big concerns at this point. His surgeon is adjusting how they usually do this surgery to try to cut down on some of the issues, BUT that means a longer surgery which means longer intubation and more anesthesia. Also because of the nature of the surgeries Eli will need to be off his blood thinners for 10-14 days after surgery. That is terrify to think about.
Bob and I ~ It's a day at a time. Sometimes hour by hour. My surgery recovery is going pretty well. I'm doing more than I probably should because it's almost impossible not to in a house this busy. This has resulted in sore muscles and daily headaches. I'm just trying to get to a point in this recovery where I can almost be myself again, but that's not looking like it's going to happen. The lower part of my skull and neck are very sore and still hurting quite a bit. The middle and upper section of my head are so numb I can barely feel when they are touched. Which makes getting hit in the head apparently so much worse, because I didn't realize how bad it was until it really was hurting. Sleep is what I want to do, but that only happens at night now, naps haven't happened for almost 2 weeks. It's nobody's fault, it's just life around here. My mom leaves on March 10th so after 2 months it will be a big adjustment trying to keep up with it all around here.
So you say WOW that's alot of info. It is. It's the whole story. Not just the sugar fluff. Don't get me wrong there is lots of sugar fluff.
Ari is calling Bob "Dad" consistently and it's so adorable. She flutters her big eyes at him and his heart melts. Her drawing has gotten so amazing and she's very talented.
Ben is at times so adorable and loving and once in a while will just walk up and climb into my lap. Sometimes he will go to Eli and give him hugs and play with him without any prompting.
Jace can be the most loving helpful kid ever if he wants to be. He is amazing with Eli and their relationship is so fun to watch.
Emily is getting so good at the violin and we can really hear her progress. Her love for music is blossoming and she can be heard singing thru the house.
Eli is learning how to pick up his toys and loves to help with laundry. He's learning how to do puzzles and really enjoys them.
Laughter can be heard often thru our home.
But we have real fears. HUGE terrifying fears that grip at my heart. I'm terrified for every illness with Eli. This upcoming surgery. The things that could go wrong in the blink of an eye. The thoughts of what is to come. The guilt over missing 3 hrs with Eli if I run to the store. The laying awake at night listening to make sure that I can hear him breathing. The fears are all there and they never leave. I look at Eli and I'm terrified for what lies before us, how long is left? Could this be the last day, week? Could this be the last time we hear that laugh or see that skill? Progressive disorders are rough as it will get worse, yet nobody knows when and how. Life can change in the blink of an eye...and not only CAN it change but it DOES change.
I'm terrified for who and what I'll be when this journey with Eli comes to a close. I am so isolated from life and friends and family and the world. I am Eli, I am an extension of him. I feel as though we are attached by an invisible line that keeps us always close. His information is constantly running thru my head ready to give to the first doctor or nurse who needs it. I'm a vital piece of his medical equipment. Every moment of my life is consumed with caring for him. I am a shell of a person, I am soley Eli's caretaker. I love every moment of it, but I'm terrified for when that is no longer my job. I'm exhausted.
For now I'm exhausted. This has been quite the mental and emotional post.
***My final disclaimer. All comments left must be approved by me first before posting. I will not post anything that is inappropriate or threatening. Also keep in mind that I have a tracker on the blog***
Saturday, February 2, 2013
FUCK YOU
Dear INSANE blog stalker.
FUCK OFF.
Here is my surgery journey in photo. I am very clearly not making this up. I checked into my local hospital. I spent 2 hrs being poked while they tried to get an IV. I was wheeled into the operating room. My head, neck, and brain were cut open. Part of my skull and vertebrae were removed. my head and necked were stitched and stapled shut. I threw my guts up repeatedly in post-op. I spent 2 terrible sick painful days in neuro-icu. I spent 2 more days on the floor. I had my stitches dug and ripped out of my head. I feel the REAL pain from this REAL surgery every day in every aspect of my life.
So FUCK YOU!
FUCK OFF.
Here is my surgery journey in photo. I am very clearly not making this up. I checked into my local hospital. I spent 2 hrs being poked while they tried to get an IV. I was wheeled into the operating room. My head, neck, and brain were cut open. Part of my skull and vertebrae were removed. my head and necked were stitched and stapled shut. I threw my guts up repeatedly in post-op. I spent 2 terrible sick painful days in neuro-icu. I spent 2 more days on the floor. I had my stitches dug and ripped out of my head. I feel the REAL pain from this REAL surgery every day in every aspect of my life.
So FUCK YOU!
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| Here is me and the bear my family made for me in Pre-Op. I was wheeled back to the OR 10 minutes later. |
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| Here is me in post-op. I was nauseaus as hell. They were giving me meds every hr to control the pain and keep me from throwing up. I kept forgetting to breathe so they kept nudging me and reminding me. |
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| Here is me a few days later after I got onto the neuro floor. This was one of my first times sitting up. |
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| Here is my incision a few days after surgery. |
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| incision right around a week after surgery. |
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| my incision the day i got my stitches removed |
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| my incision this morning |
Life
I haven't blogged in a while. Mainly because I'm recovering from brain surgery. This seems so obvious. I'm exhausted. Typing is something my brain is still trying to re figure out. I have headaches alot. I can only sit up for so long before my neck gets so tired, and for quite a while there the dizziness and nausea would kick in something fierce if I sat much.
I'm officially in PT now. She is having me go 3 times a week. It's not fun, but not horrible. I really like my therapist and that helps. Most of the work right now she does while I just lay there. She's starting to have me do a few basic stretches by myself and we always end with this amazing heat machine that I'm in love with! I've been wanting heat since my surgery. I'm still not allowed on my neck or head but at this point my shoulders have been very nice.
My incision is looking really good. I'm still having quite a bit of discomfort, a whole lot of tightness, and sleep is a huge struggle. I have my next recheck with my surgeon this next week. Hoping he begins to adjust some of my restrictions. I'm still currently only allowed to lift 4 lbs. That really covers what's going on with me physically. For me currently all Mito testing is on hold until I'm farther into my recovery.
The 2nd not at all obvious reason to not blog much lately is a hateful comment that I received and wasn't able to respond to. I have NOT brought this on myself. I can not give myself a Chiari Malformation OR Mito. These are not something that you can just go and get for yourself. You can't do something to cause them. You can't "catch" them from a sick person. You can't will them to come into your life. I did NOT bring this on myself. I did NOT ask for this for myself. I sure as HELL didn't ask for this for my son. I didn't ask to suffer. I'm hating every fucking day of this and how it makes me feel. I would do it over and over though if that meant that I could take it from my son. This is hell on earth and until you have lived it you have NO fucking clue and you have NO right to talk. Children and adults are dying and NOT one single one of them has done anything wrong. They haven't asked for this. Neither have their parents, or siblings, of families, or friends. This is HELL on earth and this is also our HEAVEN on earth. The torture that my family and so many other families go thru is HELL. It is unbearable, unimaginable, and not able to understood, only felt by those living it. It is also our heaven on earth because the strength we learn and the blessings that we endure and the HERO's and friends that we meet along this journey are amazing. It is also unimaginable and not able to understand, but truly to be felt deep down in our hearts and souls. We are all connected in these journeys, as separate as they may be we are all connected by what we live each day, in the Chiari community and in the Mito community.
My family.
Emily ~ Emily is at such a tough age. She's stretching her boundaries and pushing her independence. She's exploring her power, and seeing where she can dig in and refuse to give. She's dealing with some very typical pre-teen issues. There's been missing work, rushed work, forgotten assignments, skipped work, missed chores, arguing, eye rolls, hair flips, and TEARS. oh the tears. Love the pre-teen emotions. From what we hear from the other parents and the teachers this is a common theme thru a large group of the 6th graders this year. The last year of elementary school. How time flies. She's staying busy with school, violin, choir, and babysitting. She's still in her school orchestra as well as the advance 6th grade orchestra. She's still active in choir and loving music as much as ever. She babysits at least once a week, sometimes twice. Tonight is her first overnight babysitting (the parents are there). It's her regular customer. The youngest daughter is having a b-day sleepover and they have asked Emily to help with the overnight party. It should be fun for Emily and definitely a bit of babysitting variety!
Jace ~ Jace is struggling in school. The work is getting harder and he's really struggling to keep up. It takes him alot more time to process the information, especially if it is written. The math concepts have gotten more confusing and even reading them aloud now isn't proving to be enough for Jace. We meet with his teacher this week, as his teacher is equally concerned. Jace is doing well in speech right now, and is being alot more willing this year to spend some extra time focusing on his speech sounds. They are definitely still a struggle for him, but at least he's trying this year. When he's not in school he's home begging to be outdoors. He doesn't care to much about the cold weather and still prefers to be outdoors as much as possible. He's been outside almost all day today with a friend.
Benjamin ~ Ben is Ben. I feel like that describes him perfectly to all that KNOW him and says nothing to those that don't. Ben is set in his ways, as deep as always. Life has to happen Ben's way, the same way, every time. He's struggling with focusing in school and is constantly behind on his school work. He refuses to try and rushes sloppily thru it all. His teacher is lucky to even be able to read his work. His teacher this year doesn't push Ben to do his best work and she allows him to skate by with almost nothing. It hasn't been a great fit for Ben. Socially Ben has made some great strides. He has his best friend at school(for 2 yrs now), and even has a few other friends as well at school and in our neighborhood. He still tends to parallel play alot, but will actually get involved and play as well. His new favorite hobby is origami and paper airplanes. He went thru an entire pack of computer paper in no time flat. He's always looking for books at the library or grabbing an ipad to go to his favorite origami websites. If he finds you on pinterest he'll hang over your shoulder looking for projects as you scroll. He's also discovered that he has "lines on his belly" and loves watching his abs and is so proud of them.
Ariana ~ She's LOVING kindergarten. She's reading simple books with minimal help and has advanced to the next book program in kindergarten. Her writing has improved so much this year and she's even trying to sound out and write her own words and sentences. She's the social butterfly, so always making friends and having fun. She's loving her new haircut and is happy that she can still wear bows. Sometimes I still look at her and almost panic that all her hair is gone. After having long blonde hair to her bottom for so long this chin length style is a big change. It fits her so well though. Totally goes with her princess sass! Her birthday is coming up on the 13th and she's super excited to be turning 6! She loves that she's getting so big. I think age is most important to her, way more than it's ever been for any of my other kids. I'm guessing that's what happens when you have 3 older siblings and you are as strong and independent as Ari is. She's by far my most stubborn as well, which can be interesting! She's finding a love in music as well, and has to have it to sleep. She loves to always have her toe nails and finger nails always painted, preferably in pink or purple!
Elias ~ My little man. He's doing well and struggling all at the same time. I know that doesn't make alot of sense. He's running higher temps every day. He's having pain to the point of grinding his teeth until given pain meds, but we can't find the source of the pain. His keppra levels are still struggling to come up and that's WITH doing the meds thru his IV. His finally back at a good point with his secretions. His intestines are still not super happy with us but for now they are chugging along. He's developing some new rashes. His thrush is finally gone. He's signing way more, and even on certain things he's consistently combining 2, sometimes even 3 signs together by himself! He's using his polite words; thank you, please, sorry, help, excuse me. He's beginning to label more things with sign as well! He's loving his dress up set, basketball set, and bowling. Jace and Eli love to bowl together. They set up the pins and hold the ball and run at the pins falling over together knocking them all down. This results in huge belly laughs from Eli. Something we don't get often, but love so very much. When Eli starts his big belly laughs everyone in the house tends to stop and come and watch. It's mesmerizing. It's normally his siblings who get them, when they play rough and silly with him. It's my favorite time. It's so normal. So normal it's almost scary sometimes. For those few moments they are simply siblings, on the same level. There is nothing different about Eli. Melts my heart.
Eli's primary doc is passing time and keeping Eli stable until farther into my recovery. Once I'm stronger the goal is to get Eli's big surgery done quickly. Tonsils and adenoids removed, and tubes placed in his ears. He really thinks this will make a big difference. He seems a bit to optimistic, but my mommy heart is always guarded, history has shown that Eli's body doesn't always follow doctors hopes and plans.
Bob is well. Busy as always. Trying to keep up with all of life!
As most of you know we will be moving a block away. 14 months in this home. There are some things we are sad to leave but because of health and home issues we have no options left. We are staying in our neighborhood, school, all of that. We were very lucky to find a home available right by us! It is even larger than our current home and will allow the master bedroom and Eli's bedroom to be on the same floor. This eliminate stairs for he and I! It also has a working garage which is very much needed with Eli's wheelchair!
I would love to tell you that I will update soon, and that I promise to stay current and up to date with it all. But currently I make no promises. You can always find me on facebook which is updated often, especially with pics! I will end with 1 of my favorite pics lately! I was able to prop Eli one evening before bed for some super special mommy and baby cuddles!
oh and one final thing to the lovely person leaving comments and saying cruel and completely inaccurate things on my blog...FUCK OFF! oh and have a lovely afternoon!
I'm officially in PT now. She is having me go 3 times a week. It's not fun, but not horrible. I really like my therapist and that helps. Most of the work right now she does while I just lay there. She's starting to have me do a few basic stretches by myself and we always end with this amazing heat machine that I'm in love with! I've been wanting heat since my surgery. I'm still not allowed on my neck or head but at this point my shoulders have been very nice.
My incision is looking really good. I'm still having quite a bit of discomfort, a whole lot of tightness, and sleep is a huge struggle. I have my next recheck with my surgeon this next week. Hoping he begins to adjust some of my restrictions. I'm still currently only allowed to lift 4 lbs. That really covers what's going on with me physically. For me currently all Mito testing is on hold until I'm farther into my recovery.
The 2nd not at all obvious reason to not blog much lately is a hateful comment that I received and wasn't able to respond to. I have NOT brought this on myself. I can not give myself a Chiari Malformation OR Mito. These are not something that you can just go and get for yourself. You can't do something to cause them. You can't "catch" them from a sick person. You can't will them to come into your life. I did NOT bring this on myself. I did NOT ask for this for myself. I sure as HELL didn't ask for this for my son. I didn't ask to suffer. I'm hating every fucking day of this and how it makes me feel. I would do it over and over though if that meant that I could take it from my son. This is hell on earth and until you have lived it you have NO fucking clue and you have NO right to talk. Children and adults are dying and NOT one single one of them has done anything wrong. They haven't asked for this. Neither have their parents, or siblings, of families, or friends. This is HELL on earth and this is also our HEAVEN on earth. The torture that my family and so many other families go thru is HELL. It is unbearable, unimaginable, and not able to understood, only felt by those living it. It is also our heaven on earth because the strength we learn and the blessings that we endure and the HERO's and friends that we meet along this journey are amazing. It is also unimaginable and not able to understand, but truly to be felt deep down in our hearts and souls. We are all connected in these journeys, as separate as they may be we are all connected by what we live each day, in the Chiari community and in the Mito community.
My family.
Emily ~ Emily is at such a tough age. She's stretching her boundaries and pushing her independence. She's exploring her power, and seeing where she can dig in and refuse to give. She's dealing with some very typical pre-teen issues. There's been missing work, rushed work, forgotten assignments, skipped work, missed chores, arguing, eye rolls, hair flips, and TEARS. oh the tears. Love the pre-teen emotions. From what we hear from the other parents and the teachers this is a common theme thru a large group of the 6th graders this year. The last year of elementary school. How time flies. She's staying busy with school, violin, choir, and babysitting. She's still in her school orchestra as well as the advance 6th grade orchestra. She's still active in choir and loving music as much as ever. She babysits at least once a week, sometimes twice. Tonight is her first overnight babysitting (the parents are there). It's her regular customer. The youngest daughter is having a b-day sleepover and they have asked Emily to help with the overnight party. It should be fun for Emily and definitely a bit of babysitting variety!
Jace ~ Jace is struggling in school. The work is getting harder and he's really struggling to keep up. It takes him alot more time to process the information, especially if it is written. The math concepts have gotten more confusing and even reading them aloud now isn't proving to be enough for Jace. We meet with his teacher this week, as his teacher is equally concerned. Jace is doing well in speech right now, and is being alot more willing this year to spend some extra time focusing on his speech sounds. They are definitely still a struggle for him, but at least he's trying this year. When he's not in school he's home begging to be outdoors. He doesn't care to much about the cold weather and still prefers to be outdoors as much as possible. He's been outside almost all day today with a friend.
Benjamin ~ Ben is Ben. I feel like that describes him perfectly to all that KNOW him and says nothing to those that don't. Ben is set in his ways, as deep as always. Life has to happen Ben's way, the same way, every time. He's struggling with focusing in school and is constantly behind on his school work. He refuses to try and rushes sloppily thru it all. His teacher is lucky to even be able to read his work. His teacher this year doesn't push Ben to do his best work and she allows him to skate by with almost nothing. It hasn't been a great fit for Ben. Socially Ben has made some great strides. He has his best friend at school(for 2 yrs now), and even has a few other friends as well at school and in our neighborhood. He still tends to parallel play alot, but will actually get involved and play as well. His new favorite hobby is origami and paper airplanes. He went thru an entire pack of computer paper in no time flat. He's always looking for books at the library or grabbing an ipad to go to his favorite origami websites. If he finds you on pinterest he'll hang over your shoulder looking for projects as you scroll. He's also discovered that he has "lines on his belly" and loves watching his abs and is so proud of them.
Ariana ~ She's LOVING kindergarten. She's reading simple books with minimal help and has advanced to the next book program in kindergarten. Her writing has improved so much this year and she's even trying to sound out and write her own words and sentences. She's the social butterfly, so always making friends and having fun. She's loving her new haircut and is happy that she can still wear bows. Sometimes I still look at her and almost panic that all her hair is gone. After having long blonde hair to her bottom for so long this chin length style is a big change. It fits her so well though. Totally goes with her princess sass! Her birthday is coming up on the 13th and she's super excited to be turning 6! She loves that she's getting so big. I think age is most important to her, way more than it's ever been for any of my other kids. I'm guessing that's what happens when you have 3 older siblings and you are as strong and independent as Ari is. She's by far my most stubborn as well, which can be interesting! She's finding a love in music as well, and has to have it to sleep. She loves to always have her toe nails and finger nails always painted, preferably in pink or purple!
Elias ~ My little man. He's doing well and struggling all at the same time. I know that doesn't make alot of sense. He's running higher temps every day. He's having pain to the point of grinding his teeth until given pain meds, but we can't find the source of the pain. His keppra levels are still struggling to come up and that's WITH doing the meds thru his IV. His finally back at a good point with his secretions. His intestines are still not super happy with us but for now they are chugging along. He's developing some new rashes. His thrush is finally gone. He's signing way more, and even on certain things he's consistently combining 2, sometimes even 3 signs together by himself! He's using his polite words; thank you, please, sorry, help, excuse me. He's beginning to label more things with sign as well! He's loving his dress up set, basketball set, and bowling. Jace and Eli love to bowl together. They set up the pins and hold the ball and run at the pins falling over together knocking them all down. This results in huge belly laughs from Eli. Something we don't get often, but love so very much. When Eli starts his big belly laughs everyone in the house tends to stop and come and watch. It's mesmerizing. It's normally his siblings who get them, when they play rough and silly with him. It's my favorite time. It's so normal. So normal it's almost scary sometimes. For those few moments they are simply siblings, on the same level. There is nothing different about Eli. Melts my heart.
Eli's primary doc is passing time and keeping Eli stable until farther into my recovery. Once I'm stronger the goal is to get Eli's big surgery done quickly. Tonsils and adenoids removed, and tubes placed in his ears. He really thinks this will make a big difference. He seems a bit to optimistic, but my mommy heart is always guarded, history has shown that Eli's body doesn't always follow doctors hopes and plans.
Bob is well. Busy as always. Trying to keep up with all of life!
As most of you know we will be moving a block away. 14 months in this home. There are some things we are sad to leave but because of health and home issues we have no options left. We are staying in our neighborhood, school, all of that. We were very lucky to find a home available right by us! It is even larger than our current home and will allow the master bedroom and Eli's bedroom to be on the same floor. This eliminate stairs for he and I! It also has a working garage which is very much needed with Eli's wheelchair!
I would love to tell you that I will update soon, and that I promise to stay current and up to date with it all. But currently I make no promises. You can always find me on facebook which is updated often, especially with pics! I will end with 1 of my favorite pics lately! I was able to prop Eli one evening before bed for some super special mommy and baby cuddles!
oh and one final thing to the lovely person leaving comments and saying cruel and completely inaccurate things on my blog...FUCK OFF! oh and have a lovely afternoon!
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