A lot has been going on (which helps explain why I've been too busy to do a blog post!). I don't really even know where to start. Normally I like to go chronologically, but my memory is fading as time passes so here are the highlights (in no particular order):
***We're moving. Sometime next week Eli will be discharged from Peyton Manning Children's Hospital and admitted to St. Mary's Medical Center (SMMC) in Evansville. He will be an inpatient in their rehab program which we expect to last about two weeks. While we are very excited and grateful to continue his therapy on an inpatient basis so we don't use up our limited outpatient resources, we are sad to leave PMCH. The people here have worked so hard to make us comfortable and I don't think I could be so spoiled at any other hospital! We know this is the best step for Eli and we aren't doubting the decision at all. As well as he's doing, he isn't ready to come home so this is the next logical step and we are so glad our insurance is in agreement with that! This Friday Eli will have a repeat swallow study to see what progression he's made in regards to his safety while eating and drinking. On Monday he'll finish his six week course of antibiotics and his PICC line will be pulled out. When they do that, the docs want the tip of it to be cultured for any possible infection. Once that's clear (because it just HAS to be negative!), we can go to SMMC. As of now that could happen next Wednesday or Thursday. We'll know more over the next few days.
***Eli is continuing to surprise us with things he can do. He's still riding the special trike I wrote about last time. Yesterday (Tuesday Feb 25) was a great day for him. In his morning OT session, he was placed on his feet and he stood, unassisted, for 20 seconds!!!! Then we had his weekly care conference and that was one of the highlights we discussed. Later that afternoon Eli was working with PT. During that session he walked! The therapist stood behind him and held him around the torso. She used her feet to push his feet out and they walked about 50 feet from the gym to our room where I was. I dropped to my knees in the hallway and hugged my tired little miracle boy so tight as the tears fell. Today he walked in a joint PT/OT session this morning with one therapist behind him and one in front of him. It was better than yesterday and he worked harder at moving his feet himself. This afternoon he walked during his PT session. He used a walker (one of the tiniest little things you've ever seen and it's adorable!). We used an ACE wrap to keep his left hand on the walker and a styrofoam plate taped to his left foot to help him slide it instead of getting caught on the floor. He did amazing again. After he walked, they had some playtime in the gym. Then he rode the trike down the hall and back past the gym to our room. After all that he still wanted to go to the playroom! We did for a while but his body was much more tired than Eli was willing to admit so he rode in his wheelchair as I walked him around the hospital. This is more than we thought we'd ever see him do again and it's only been five weeks since his strokes. We are so amazed by this little boy!
Keep the prayers coming!
- for Eli to continue to work hard in therapy and get the most benefit he can from the therapists and staff here at PMCH
- for a smooth transition from PMCH to SMMC. It's taken a long time for him to trust these therapists and this is our biggest concern with switching facilities
- for Eli to have an easier time going to bed. He works so hard through the day and it's really hard for him to let himself shut down at the end of the day. For the past three nights he's spent at least an hour screaming for whatever he fixates on that night (first night was food, second was to remove his boot, and tonight was for me to carry him in the halls). He's getting some meds to help him at bedtime and it has made a positive difference, but Eli still has to do his thing
- for our heart buddy Liam who got a heart transplant yesterday. The last report I had was that Liam was extubated, awake, and alert. Please pray for his body to accept this new heart, for him to recover quickly so he can start intensive therapy for the massive stroke he suffered last October, and for the donor family as they grieve their loss.
- for many of the sweet babies and kiddos we've met through our weeks here at PMCH. We've seen many come and go and we've been lucky to get to know several. They're all facing their own struggles and a prayer for good health and to ease their burdens is always appreciated.
I'll provide more information about our transition as it comes available. I'd love to post some pics of Eli here tonight but that's going to take too long and the couch is calling my name!!! Thank you for the prayers and all the support. We can never thank you enough!
Wednesday, February 26, 2014
Thursday, February 20, 2014
02/20/2014 Update and Some Pictures
Eli continues to work hard in his therapies. At our care planning conference this week, the physical medicine doctor was very pleased to hear of his progress. That doesn't diminish the long road he has ahead but he is surprising us with what he's already accomplished. Lately, he's been working better if I'm not there. If he doesn't know I'm around he will work with a much better attitude than if I am there. When he sees me he whines, wants in my lap, wants a ride in his wheelchair, etc. So far he hasn't figured out that I'm usually watching at the window or around the corner!
Some things he's working on in therapy are balance, leg strength, arm strength, and trunk and neck control. Sessions over the past two days, for example, include sitting on an exercise ball. With a therapist in front and one behind him, they rock him side to side. When one of us loses our center of gravity, what do you do? Do you push your arm out to balance yourself? That's what Eli did. We knew he would to the right, but we were pleasantly surprised to see the left as well. He even had finger extension with it (details that are a big deal!). That shows the reflexes are there and with more (lots more!) therapy/rehab he should get some use back in that arm and hand. How much? We don't know but to see what he's shown at this stage is encouraging. It's obvious to us that therapy is working and he needs to continue with it.
Today in therapy, he rode a tricycle. It was a special trike with foot and hand pedals. The therapist used ACE bandages to wrap his left hand and foot to their respective pedals. She sat on a rolling stool in front of him and steered while he pedaled himself through the hallway. He went around the entire unit one time. By the end it was obvious he was tired because his chest was almost resting on the hand pedals. When I came up and asked what he was doing in therapy today, he looked right at me and said "We take this ours house?" Erin (therapist) told me of a program that helps provide equipment like that to special needs kids. There's a form to fill out and we also include how much money we're able give them toward the equipment ($0, $50, whatever). They then use donations/grants to make up the difference and get him the piece he needs. I think that trike will definitely be a request!
Also today, he had an eye exam. We've said from the start that we thought his vision was affected by the strokes. That has drastically improved over the last couple weeks. He can focus on objects and faces, he can track an object much better, and he doesn't seem as bothered by his vision as he was. At one point we thought his eyes were working independently of each other, making it very difficult for him to focus. We don't see that so much now. Eli's eyes were dilated with drops this afternoon and later the pediatric opthalmologist came by. After the exam he said he didn't see anything to be concerned about right now. His exam was done in the therapy gym and Eli's PT and OT were there so they could also relate his history. The doctor was very pleased to hear the progress over the last couple weeks and thinks the issues we're seeing with him may get better. Right now, Eli's lower field of vision seems to be affected. If he's looking at something on his lap, his face has to be parallel to it for him to see it. Right now we can just encourage him to keep looking that way and hope it also improves with time. We'll go back and see this doctor in May or June. I like follow ups that aren't in the near future. It's a rare comfort these days!
Here's a few pics I've taken over the last several days. As I'm posting, I realize I don't have photos of his new wheelchair, his cool leg braces, or some of the other things that are helping us out. I'll work on that because those are things I want to document for him. He needs to see how far he's come and the types of things he had to do.
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We do have the Eli's MVPs bracelets. If anyone wants one, they are $3 each and if you need them mailed it will be a couple more dollars (so they can bypass the sorting machine and not get torn up). Please contact us via Eli's Facebook page Eli's Facebook page or email us at elismvps@yahoo.com. We also still have Pizza Hut coupon cards available for $10 each as well as the tshirt and hoodies for sale. Contact us through the previously listed Facebook page or email for information or to place an order.
Fundraisers still going on for Eli include:
Stampin' Up Fundraiser on Sunday the 23rd in Indianapolis. For information click here.
Thirty-One For more info or to order, click here
Origami Owl For more info or to order, click here
Monetary donations can be sent to:
Bethel United Methodist Church
PO Box 791
Washington, IN 47501
(checks can be made out to the church with "Eli" in the memo line. 100% will be deposited into the account set up for us)
The Pizza Hut fundraiser was a huge success. We don't have the final total, but I think I heard Pizza Hut wants to make a presentation to us because it was one of the biggest fundraisers of this type they've done. They're also planning on doing it again next year during CHD Awareness Week (Feb 7-14). Thank you to everyone who made that so special for us. Also thank you for the prayers, the care packages, the donations, and so many other things. Eli is slowly getting caught up on his mail (a few a day) but it will be a while before he gets through it all...and it keeps coming! The volunteers who deliver the mail are amazed by the amount of packages and cards he has received. We are amazed by the support we've received from all of you. Thank you doesn't suffice but right now that's the best I can offer.
Some things he's working on in therapy are balance, leg strength, arm strength, and trunk and neck control. Sessions over the past two days, for example, include sitting on an exercise ball. With a therapist in front and one behind him, they rock him side to side. When one of us loses our center of gravity, what do you do? Do you push your arm out to balance yourself? That's what Eli did. We knew he would to the right, but we were pleasantly surprised to see the left as well. He even had finger extension with it (details that are a big deal!). That shows the reflexes are there and with more (lots more!) therapy/rehab he should get some use back in that arm and hand. How much? We don't know but to see what he's shown at this stage is encouraging. It's obvious to us that therapy is working and he needs to continue with it.
Today in therapy, he rode a tricycle. It was a special trike with foot and hand pedals. The therapist used ACE bandages to wrap his left hand and foot to their respective pedals. She sat on a rolling stool in front of him and steered while he pedaled himself through the hallway. He went around the entire unit one time. By the end it was obvious he was tired because his chest was almost resting on the hand pedals. When I came up and asked what he was doing in therapy today, he looked right at me and said "We take this ours house?" Erin (therapist) told me of a program that helps provide equipment like that to special needs kids. There's a form to fill out and we also include how much money we're able give them toward the equipment ($0, $50, whatever). They then use donations/grants to make up the difference and get him the piece he needs. I think that trike will definitely be a request!
Also today, he had an eye exam. We've said from the start that we thought his vision was affected by the strokes. That has drastically improved over the last couple weeks. He can focus on objects and faces, he can track an object much better, and he doesn't seem as bothered by his vision as he was. At one point we thought his eyes were working independently of each other, making it very difficult for him to focus. We don't see that so much now. Eli's eyes were dilated with drops this afternoon and later the pediatric opthalmologist came by. After the exam he said he didn't see anything to be concerned about right now. His exam was done in the therapy gym and Eli's PT and OT were there so they could also relate his history. The doctor was very pleased to hear the progress over the last couple weeks and thinks the issues we're seeing with him may get better. Right now, Eli's lower field of vision seems to be affected. If he's looking at something on his lap, his face has to be parallel to it for him to see it. Right now we can just encourage him to keep looking that way and hope it also improves with time. We'll go back and see this doctor in May or June. I like follow ups that aren't in the near future. It's a rare comfort these days!
Here's a few pics I've taken over the last several days. As I'm posting, I realize I don't have photos of his new wheelchair, his cool leg braces, or some of the other things that are helping us out. I'll work on that because those are things I want to document for him. He needs to see how far he's come and the types of things he had to do.
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| 02/06/2014: This is Eli working on the tilt table. It's exactly what it sounds like. He's laid on a table and straps are placed over his chest and legs. Then the table is slowly raised until Eli is standing (about 70-80 degrees). This helps hold him upright while he practices putting weight on his legs again. He actually asks for this when we're in the gym. |
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| These are the knee imobilizers used to keep his knees from bending while he's standing at the tilt table. |
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| 02/12/2014: Eli's feet and lower legs were casted so leg braces could be made for him. |
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| 02/15/2014: Silly boys! |
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| Zachary dancing in the hospital lobby. He was so happy to see his brother for the first time in a month. It was obvious it cheered both of them up to be together again. |
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| We got to spend a few minutes together in the lobby. Children are not allowed to visit the units yet because of the flu restrictions, but Eli has permission to visit the lobby a couple times a day. We didn't ask because of Zachary, but it sure worked out for us! |
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| Playing peek-a-boo |
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| Eli with his friend (girlfriend?) Maddy. She's an older woman at 19 years old, but so incredibly sweet that I can't blame him for having a crush on her. She just completed a 29 week chemotherapy schedule so please keep her in your thoughts and prayers also. |
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| Eli helping one of his favorite nurses scan his nighttime meds. He likes to help the nurses! |
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| 02/20/2014: Balancing on an exercise ball. The picture isn't the greatest quality because I took it through a window so he wouldn't see me! |
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| 02/20/2014: Riding the trike in therapy. This was at the end of his very long ride. |
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| 02/20/2014: Mike Wazowski in our bathroom. Yes, it really is Mike Wazowski from Monster's University. This balloon was delivered to Eli today. A group of girl scouts brought it to the unit and the staff decided Eli should have it. With its huge feet flat on the floor it stands 55 inches tall. This thing is huge. It's in our bathroom now because I'm afraid to sleep with it in the room! I had to turn it around so it didn't watch me do my business last time I was in there! It is taking every bit of self control I've ever had (and I don't have much) not to attempt to scare the staff tonight. I really, really want to sneak it into the nutrition room (right across the hall from us) and shut off the light. Then when a nurse goes in for formula or a drink she'll turn on the light and see this. The only reason I haven't is because there is a nurse here who is about two weeks away from delivering a baby and I don't want to be responsible for sending her into labor tonight. Eli gets a big kick out of this thing. I do too but I just don't want to wake up to it! I put it in the doorway to watch people in the hall while Eli ate supper. Some thought it was funny and some just looked at me like I was really strange. Fun times! |
We do have the Eli's MVPs bracelets. If anyone wants one, they are $3 each and if you need them mailed it will be a couple more dollars (so they can bypass the sorting machine and not get torn up). Please contact us via Eli's Facebook page Eli's Facebook page or email us at elismvps@yahoo.com. We also still have Pizza Hut coupon cards available for $10 each as well as the tshirt and hoodies for sale. Contact us through the previously listed Facebook page or email for information or to place an order.
Fundraisers still going on for Eli include:
Stampin' Up Fundraiser on Sunday the 23rd in Indianapolis. For information click here.
Thirty-One For more info or to order, click here
Origami Owl For more info or to order, click here
Monetary donations can be sent to:
Bethel United Methodist Church
PO Box 791
Washington, IN 47501
(checks can be made out to the church with "Eli" in the memo line. 100% will be deposited into the account set up for us)
The Pizza Hut fundraiser was a huge success. We don't have the final total, but I think I heard Pizza Hut wants to make a presentation to us because it was one of the biggest fundraisers of this type they've done. They're also planning on doing it again next year during CHD Awareness Week (Feb 7-14). Thank you to everyone who made that so special for us. Also thank you for the prayers, the care packages, the donations, and so many other things. Eli is slowly getting caught up on his mail (a few a day) but it will be a while before he gets through it all...and it keeps coming! The volunteers who deliver the mail are amazed by the amount of packages and cards he has received. We are amazed by the support we've received from all of you. Thank you doesn't suffice but right now that's the best I can offer.
Monday, February 17, 2014
Still Working Hard
Really wish I had more time/energy to devote to a good long post full of details about things Eli is saying and doing these days, but I don't. Overall we have many more positives than negatives. It's been a lot of work for Eli, but he is progressing in his therapies. He shows more movement in his left leg in most areas (hip, knee, ankle, and foot). His left arm shows more movement as well, but less than the leg. We're told it's common for the lower extremities to regain before the upper extremities.
Eli has two splints for his left arm. He wears one twice a day for four to six hours at a time and the other one is throughout the night. He also has a boot he wears on his left foot at night. Last week he was fitted for leg braces and we got them Friday. He's adjusting to a wearing schedule for those (one to two hours at a time multiple times a day until he wears them full time through the day). We had to buy new shoes for him that will fit with the braces inside them. Today he wore them for a three hour stretch and had the new shoes on (two sizes bigger than his non-braced foot size to accommodate the braces). The purpose of these splints, boots, and braces are to help him utilize the muscles he "knows" he has control of and to help maintain the muscles he isn't aware of. For example, he's not walking or bearing much weight on his legs so we have to do lots of stretching to keep those muscles from getting weaker as well as use the braces to keep his fingers/toes/hand/foot in proper positions since he can't keep them there himself.
Our typical day starts about 7:30. I get up and order his breakfast so it's here within an hour. I get myself ready and then start waking Eli by 8 if he's not already awake. Speech therapy starts around 8:30 and there's a lot to do before we begin. We take off his nighttime splints, change a diaper, brush his teeth, get him transferred from the bed to his special chair on the couch (which is also my bed so my bedding has to be cleared off and his chair set up), and allow him time to just wake up. He has to be very alert before he's allowed to eat or drink so there's less risk of aspiration. Also during this time, nursing is in here to get is morning meds administered, take his vital signs and asses him, and the unit's nurse practitioner and/or doctors start stopping by to check on him. Sometimes the speech therapist is accompanied by PT or OT and they work together for a session. Usually it's just speech which is then followed by either PT or OT.
By then it's about 11am and that is the beginning of his downtime. He gets a tube feeding for two hours and has time to nap. He is taking food by mouth and doing well, but it's a lot of work for him. By giving him a feeding in the middle of the day, that saves him some energy and gets him nourishment to get through the afternoon sessions. Those start about 1:30 and it's usually a combination of PT and OT working together for an hour or so. Most days we finish up with another session of speech therapy. All that is typically over by 4pm. On weekends he still has therapy sessions but it is less
In total he usually gets 3-4 sessions a day for about four hours. His endurance has increased as well as his strength, but it is exhausting for him. After therapies are done, he's often hungry so we start an early supper/late lunch. He wants to ride in the halls in his chair, watch movies, and eat throughout the evening. If it sounds like he eats a lot, it's true, but remember that it takes a lot of energy for him to eat. It's a very slow process. We're just thankful that he has the drive to eat. Some don't after everything he's been through and that makes things a lot more difficult for those kids. With Eli we have to make sure he doesn't exhaust himself trying to eat!
Also throughout the day, we have to remember to give him breaks from his wrist splints, make nearly everything we do have some form of therapy within it, do stretches multiple times a day, and all that while still trying to makes plans for what he'll need once we go home. Home is still probably a while off. At this point we still don't know how long he'll be here, if he'll require an inpatient rehab facility, or if he can come home with intensive outpatient therapy. Our issue with outpatient therapy is that our insurance policy only covers 25 visits each of PT, OT, and speech therapy per year. That would be about six weeks of therapy at the rate Eli is currently using. A hospital social worker has been working very hard to find what programs are available to us. I'm also contacting people to inquire the same thing. It's a lot of paperwork and phone calls which are difficult to do with our daily schedules. Thank goodness for social workers! We'll see what comes about. I've got a few things to follow up on this week.
In addition to those tasks, Eli should be getting a wheelchair of his own on Monday. It will fit him better, thereby allowing him to use better posture, and most importantly be more comfortable. This is not a custom wheelchair because we don't anticipate he'll need it long term, but at least in the beginning he will. We're also in the process of getting insurance authorization (trying to!) for a special car seat and bath seat. We'll see how those go.
Over the weekend, we asked if Eli could leave the unit for our walks. He's allowed to go to the lobby for short periods. There's a fountain down there that always has holiday-appropriate ducks as decorations. It just so happened that Mamaw, Papaw and Zachary came to visit Saturday night. Bryan, Zachary and I left and got to spend time together while Eli hung out in his room with his grandparents. When we got back, I came up to the room and got Eli. We went to the lobby and for the first time in a month, the four of us were together again. It was amazing to sit on a couch and have one of my babies on each side of me. We exchanged Valentines Day cards and gifts. I was given a beautiful heart shaped locket from Origami Owl that Zachary designed. I was very surprised and pleased. Eli was obviously having fun and said Zachary could push him in his wheelchair (an honor he is very stingy to bestow on others). Zachary was very careful and even set the brakes without being told or shown how to. He did it perfectly. They played peek-a-boo, made silly faces, and just laughed together like brothers should be able to on a daily basis. It did both of them good as well as me and Bryan to see them.
Specific Prayer Requests:
- that Eli is allowed to stay here long enough to make progress with the therapists he is accustomed to
- that he makes progress in all areas (motor skills, speech, swallowing, strength, vision, etc)
- our care planning meeting on Wednesday is good and we can make some better plans for Eli's immediate future
- that Eli and Mommy get the rest they need to make each day count
- for the four of us as we endure more time apart and miss being a family in our home
- that we continue to focus on what Eli can do versus what he can't
Thank you all so much!
Eli has two splints for his left arm. He wears one twice a day for four to six hours at a time and the other one is throughout the night. He also has a boot he wears on his left foot at night. Last week he was fitted for leg braces and we got them Friday. He's adjusting to a wearing schedule for those (one to two hours at a time multiple times a day until he wears them full time through the day). We had to buy new shoes for him that will fit with the braces inside them. Today he wore them for a three hour stretch and had the new shoes on (two sizes bigger than his non-braced foot size to accommodate the braces). The purpose of these splints, boots, and braces are to help him utilize the muscles he "knows" he has control of and to help maintain the muscles he isn't aware of. For example, he's not walking or bearing much weight on his legs so we have to do lots of stretching to keep those muscles from getting weaker as well as use the braces to keep his fingers/toes/hand/foot in proper positions since he can't keep them there himself.
Our typical day starts about 7:30. I get up and order his breakfast so it's here within an hour. I get myself ready and then start waking Eli by 8 if he's not already awake. Speech therapy starts around 8:30 and there's a lot to do before we begin. We take off his nighttime splints, change a diaper, brush his teeth, get him transferred from the bed to his special chair on the couch (which is also my bed so my bedding has to be cleared off and his chair set up), and allow him time to just wake up. He has to be very alert before he's allowed to eat or drink so there's less risk of aspiration. Also during this time, nursing is in here to get is morning meds administered, take his vital signs and asses him, and the unit's nurse practitioner and/or doctors start stopping by to check on him. Sometimes the speech therapist is accompanied by PT or OT and they work together for a session. Usually it's just speech which is then followed by either PT or OT.
By then it's about 11am and that is the beginning of his downtime. He gets a tube feeding for two hours and has time to nap. He is taking food by mouth and doing well, but it's a lot of work for him. By giving him a feeding in the middle of the day, that saves him some energy and gets him nourishment to get through the afternoon sessions. Those start about 1:30 and it's usually a combination of PT and OT working together for an hour or so. Most days we finish up with another session of speech therapy. All that is typically over by 4pm. On weekends he still has therapy sessions but it is less
In total he usually gets 3-4 sessions a day for about four hours. His endurance has increased as well as his strength, but it is exhausting for him. After therapies are done, he's often hungry so we start an early supper/late lunch. He wants to ride in the halls in his chair, watch movies, and eat throughout the evening. If it sounds like he eats a lot, it's true, but remember that it takes a lot of energy for him to eat. It's a very slow process. We're just thankful that he has the drive to eat. Some don't after everything he's been through and that makes things a lot more difficult for those kids. With Eli we have to make sure he doesn't exhaust himself trying to eat!
Also throughout the day, we have to remember to give him breaks from his wrist splints, make nearly everything we do have some form of therapy within it, do stretches multiple times a day, and all that while still trying to makes plans for what he'll need once we go home. Home is still probably a while off. At this point we still don't know how long he'll be here, if he'll require an inpatient rehab facility, or if he can come home with intensive outpatient therapy. Our issue with outpatient therapy is that our insurance policy only covers 25 visits each of PT, OT, and speech therapy per year. That would be about six weeks of therapy at the rate Eli is currently using. A hospital social worker has been working very hard to find what programs are available to us. I'm also contacting people to inquire the same thing. It's a lot of paperwork and phone calls which are difficult to do with our daily schedules. Thank goodness for social workers! We'll see what comes about. I've got a few things to follow up on this week.
In addition to those tasks, Eli should be getting a wheelchair of his own on Monday. It will fit him better, thereby allowing him to use better posture, and most importantly be more comfortable. This is not a custom wheelchair because we don't anticipate he'll need it long term, but at least in the beginning he will. We're also in the process of getting insurance authorization (trying to!) for a special car seat and bath seat. We'll see how those go.
Over the weekend, we asked if Eli could leave the unit for our walks. He's allowed to go to the lobby for short periods. There's a fountain down there that always has holiday-appropriate ducks as decorations. It just so happened that Mamaw, Papaw and Zachary came to visit Saturday night. Bryan, Zachary and I left and got to spend time together while Eli hung out in his room with his grandparents. When we got back, I came up to the room and got Eli. We went to the lobby and for the first time in a month, the four of us were together again. It was amazing to sit on a couch and have one of my babies on each side of me. We exchanged Valentines Day cards and gifts. I was given a beautiful heart shaped locket from Origami Owl that Zachary designed. I was very surprised and pleased. Eli was obviously having fun and said Zachary could push him in his wheelchair (an honor he is very stingy to bestow on others). Zachary was very careful and even set the brakes without being told or shown how to. He did it perfectly. They played peek-a-boo, made silly faces, and just laughed together like brothers should be able to on a daily basis. It did both of them good as well as me and Bryan to see them.
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| Silly faces! |
Specific Prayer Requests:
- that Eli is allowed to stay here long enough to make progress with the therapists he is accustomed to
- that he makes progress in all areas (motor skills, speech, swallowing, strength, vision, etc)
- our care planning meeting on Wednesday is good and we can make some better plans for Eli's immediate future
- that Eli and Mommy get the rest they need to make each day count
- for the four of us as we endure more time apart and miss being a family in our home
- that we continue to focus on what Eli can do versus what he can't
Thank you all so much!
Monday, February 10, 2014
Progress
I know I don't technically owe any apologies, but I want to issue one anyway. I'm sorry for the lack of updates lately. You all pray for the special requests we put out, send cards and care packages, support our fundraising efforts, and boost our spirits with your kind comments and thoughtful words. We are so appreciative of all that and more, and I want to keep all of you aware of the happenings in Eli's journey. However, we've been very, very busy! As they say, "No news is good news" and that is true in this case as well!
I think our last real update about Eli's condition came right when we had CT confirmation of his strokes. A few days after that he was transferred out of the PICU to our home base on the third floor. That was on Wednesday, Jan 29. At that point Eli was still not moving the left side much, he was speaking a few words when prompted, and when he wasn't sleeping he was very fussy. Even though he was running a low fever that morning, he was still transferred. Docs on the third floor can deal with fevers as easily as the PICU docs! We don't know for sure, but we think his fevers were an effect of the strokes. His central nervous system is going through some major adjustments because of the damage that was done and it isn't uncommon for a stroke patient to have temperature fluctuations as a result. A big reason for the transfer is because he needed a lower stimuli environment. Hospitals aren't the best places to get rest and that's especially true for an intensive care unit. In comparison with the PICU, the third floor is quieter and doesn't have as much hustle and bustle. In fact, Eli had a peaceful two hour nap after the transfer. We hadn't seen him sleep that comfortably since prior to surgery.
On Thursday (Jan 30) I came to Washington. I got to spend the night in my home, sleep in my bed, and (most importantly) spend time with Zachary. I took him to school on Friday then I went to a training session at work. It was so strange to do "normal" things. That night Zachary, my mom, and I ate at Mi Pueblo and got a little shopping done. Bryan was in Indy with Eli and had been there for two weeks. We had NOTHING at the house and Bryan was coming back home to start work again the next week. Zachary and I went to WalMart and the grocery store. Saturday morning I had a roast and veggies going in the crock pot. Z and I got to spend more time together then Bryan came home. The three of us went to Zachary's first basketball game of the season (he's on the Bulls this year) and then he was in charge of what the three of us did for the night. Without hesitation he told us we were going to get Taco Bell drive thru, eat on tv trays at the couch while we watched Turbo and Planes. That's exactly what we did. Then the three of us snuggled in our bed all night long. If there was ever a kid who deserved to have some time with both parents, it's Zachary and we didn't waste a minute of it!
On Sunday I packed up and headed back to Indy. During the previous week, we had gone through the chain of command here on the third floor. The visiting restrictions are still in place stating that only parents and grandparents can visit. We explained our situation and were granted permission for my sister to spend the night with Eli in our absence. It was soooo hard to be away from the hospital at all, but especially hard when Bryan was home too. Eli has always had one of us with him and even though we knew we were doing the right thing by being with Zachary, it was hard to be away.
On Monday, Eli started asking for food. At first it was a very sad, pathetic "I'm hungry." When that didn't work he thought he had to get more specific with me. He told me he wanted chocolate. Then he said he wanted a burger. With ketchup. Later I received step by step instructions "Get phone. Call. Order mine food. Want burger. Want tet-chup on mine burger." It was a long day. The doctor on for the night got him on the schedule for a swallow study the next day. Because of the strokes, we didn't know how strong or coordinated his swallow was. For the test, he was offered different items (thin liquids, nectar thickened liquids, honey thickened liquids, and solids) that were mixed with barium. As he drank/ate, xrays were taken of his swallow as the speech therapist and a radiologist watched the results. I was given different instructions of what to offer and how much based on the previous results. In the end, Eli did well with the nectar thickened liquids, but did aspirate some when he had thin (regular) liquids. Overall, I was very pleased with the results. The next day in speech therapy he was allowed to start having food as part of the session. They are working with his verbal skills as well as swallowing.
He's been very active in physical and occupational therapies (PT and OT) as well. When the week started he was having one joint session of PT/OT. As the week progressed he's gradually come to have two sessions a day (one PT or OT and one joint session) in addition to one or two speech therapy sessions. That means he can have up to four sessions each day. As he's working so hard, we've had to adjust schedules to account for napping and work around his feeding schedule. Since he's taking some food by mouth, we can change around how and when he gets the tube feedings. Right now he's scheduled for two hour feedings at 10am and 3pm with an overnight drip from 9pm to 7am. We can adjust the 10 and 3 feedings as needed based on the timing of therapy sessions.
He has made huge changes since his time in the PICU (and we noticed a lot of improvement there too!). He's moving the left leg and foot a lot more, his left hand and arm a little more, eating very well (with a lot of supervision), and speaking a lot more words and phrases. He's turning his head left, right and midline, gaining a lot of strength in his head and neck which is dramatically increasing his head control, and starting to lift his head and shoulders off a pillow when he's reclining. In therapy, he has stood for 10-15 minutes up to twice a day on a tilting table. We lay him on a table, secure him with straps across his chest and stomach, and mechanically tilt the table until he's upright. That way he can practice putting weight on his feet without actually having to support his full body weight. He's also wiggling around in bed a lot. Enough movement to warrant moving his regular bed out and replacing it with a crib!
Our room is getting very crowded with our personal items and all the therapy equipment in here. We have a play mat for the floor, a rounded "log" he can sit on and work on balance, a seat and base we use for feeding and time out of the bed, a wheelchair, a medieval looking contraption that I'll be shown how to properly use so he can stand in that (similar to the tilt table) and I can push him around in the hallways. I've bought two storage bins with drawers. A large one in the room holds therapy toys and a smaller one in the bathroom has his feeding supplies (sippy cups, spoons, straws, dish detergent and other washing supplies).
As far as what Eli eats, I'm allowed to order him anything pureed and we're working on solids. So far we've tested Goldfish crackers (he loves and demands them at each meal and for snacks...thankful the hospital has a seemingly endless supply of these available!). Today he had pancakes (or "pan-takes" as he calls them). He did great with those. I've been given the okay to let him have those when it's just me present as well. A patient on the unit offered Eli one of her chicken nuggets one day and he's asked for nuggets for the last two days. We may get to try some non-pureed meat in the coming week. All his liquids have to be thickened to nectar consistency. To do that, we add one pouch of SimplyThick to four ounces of liquid. He's taking juice and Gatorade really well, but isn't a fan of milk that way.
If you had told me when I was in Washington last weekend that in the next seven days Eli would progress to eating pancakes and possibly getting to try meat in the next few days I would have laughed in your face! He is doing so, so well!
By celebrating all that he has done in the past two weeks, I am not trying to diminish the long road he has ahead. There's still a lot he needs to work on. He can't sit up alone, he needs more head control, and many other things. I'm just choosing to focus on what he can do rather than what he can't. It's amazing to watch him progress. If this had happened to most adults, we'd focus on the things we're no longer able to do. The "benefit" of this happening to a child is that s/he doesn't think that way. Eli just knows what he wants to do and he'll work toward getting that task accomplished.
Our goals for the coming week are to get on a set schedule of therapies and of course make more improvements. The days are long with lots of effort (from both of us) and the evenings fly by. Usually once Eli is asleep, I'm able to take my shower, wash his bottles, pacis, and teething toys, and grab a snack (it's hard to eat in front of him since we're not on similar diets). Once that is done, I'm nearly falling over with fatigue. He's been sleeping pretty well though the night, but we have to make sure he changes his position every two hours so we can prevent bedsores.
There's so much I want to write about, but it's very late and the Monday morning speech therapy session is quickly approaching. I want to tell you about the Pizza Hut fundraiser, Zachary's basketball game, Eli's therapy progression, the great story in the Washington Times Herald about Eli, and share some pictures. None of that is happening tonight. I'll just say that from the numbers we have from Friday's fundraiser is mind blowing. We'll post more information about that as it comes available to us. We're so thankful for all of that support.
Specific Prayer Requests:
- Eli continues to make improvements as time passes
- we get more information about therapies and benefits available to us once we're out of the hospital and back home (it will be a long time, but it will take a while to get things in place also)
- that Eli and I both get the rest we need
- for our family as we miss having the four of us together
Thank you all!
I think our last real update about Eli's condition came right when we had CT confirmation of his strokes. A few days after that he was transferred out of the PICU to our home base on the third floor. That was on Wednesday, Jan 29. At that point Eli was still not moving the left side much, he was speaking a few words when prompted, and when he wasn't sleeping he was very fussy. Even though he was running a low fever that morning, he was still transferred. Docs on the third floor can deal with fevers as easily as the PICU docs! We don't know for sure, but we think his fevers were an effect of the strokes. His central nervous system is going through some major adjustments because of the damage that was done and it isn't uncommon for a stroke patient to have temperature fluctuations as a result. A big reason for the transfer is because he needed a lower stimuli environment. Hospitals aren't the best places to get rest and that's especially true for an intensive care unit. In comparison with the PICU, the third floor is quieter and doesn't have as much hustle and bustle. In fact, Eli had a peaceful two hour nap after the transfer. We hadn't seen him sleep that comfortably since prior to surgery.
On Thursday (Jan 30) I came to Washington. I got to spend the night in my home, sleep in my bed, and (most importantly) spend time with Zachary. I took him to school on Friday then I went to a training session at work. It was so strange to do "normal" things. That night Zachary, my mom, and I ate at Mi Pueblo and got a little shopping done. Bryan was in Indy with Eli and had been there for two weeks. We had NOTHING at the house and Bryan was coming back home to start work again the next week. Zachary and I went to WalMart and the grocery store. Saturday morning I had a roast and veggies going in the crock pot. Z and I got to spend more time together then Bryan came home. The three of us went to Zachary's first basketball game of the season (he's on the Bulls this year) and then he was in charge of what the three of us did for the night. Without hesitation he told us we were going to get Taco Bell drive thru, eat on tv trays at the couch while we watched Turbo and Planes. That's exactly what we did. Then the three of us snuggled in our bed all night long. If there was ever a kid who deserved to have some time with both parents, it's Zachary and we didn't waste a minute of it!
On Sunday I packed up and headed back to Indy. During the previous week, we had gone through the chain of command here on the third floor. The visiting restrictions are still in place stating that only parents and grandparents can visit. We explained our situation and were granted permission for my sister to spend the night with Eli in our absence. It was soooo hard to be away from the hospital at all, but especially hard when Bryan was home too. Eli has always had one of us with him and even though we knew we were doing the right thing by being with Zachary, it was hard to be away.
On Monday, Eli started asking for food. At first it was a very sad, pathetic "I'm hungry." When that didn't work he thought he had to get more specific with me. He told me he wanted chocolate. Then he said he wanted a burger. With ketchup. Later I received step by step instructions "Get phone. Call. Order mine food. Want burger. Want tet-chup on mine burger." It was a long day. The doctor on for the night got him on the schedule for a swallow study the next day. Because of the strokes, we didn't know how strong or coordinated his swallow was. For the test, he was offered different items (thin liquids, nectar thickened liquids, honey thickened liquids, and solids) that were mixed with barium. As he drank/ate, xrays were taken of his swallow as the speech therapist and a radiologist watched the results. I was given different instructions of what to offer and how much based on the previous results. In the end, Eli did well with the nectar thickened liquids, but did aspirate some when he had thin (regular) liquids. Overall, I was very pleased with the results. The next day in speech therapy he was allowed to start having food as part of the session. They are working with his verbal skills as well as swallowing.
He's been very active in physical and occupational therapies (PT and OT) as well. When the week started he was having one joint session of PT/OT. As the week progressed he's gradually come to have two sessions a day (one PT or OT and one joint session) in addition to one or two speech therapy sessions. That means he can have up to four sessions each day. As he's working so hard, we've had to adjust schedules to account for napping and work around his feeding schedule. Since he's taking some food by mouth, we can change around how and when he gets the tube feedings. Right now he's scheduled for two hour feedings at 10am and 3pm with an overnight drip from 9pm to 7am. We can adjust the 10 and 3 feedings as needed based on the timing of therapy sessions.
He has made huge changes since his time in the PICU (and we noticed a lot of improvement there too!). He's moving the left leg and foot a lot more, his left hand and arm a little more, eating very well (with a lot of supervision), and speaking a lot more words and phrases. He's turning his head left, right and midline, gaining a lot of strength in his head and neck which is dramatically increasing his head control, and starting to lift his head and shoulders off a pillow when he's reclining. In therapy, he has stood for 10-15 minutes up to twice a day on a tilting table. We lay him on a table, secure him with straps across his chest and stomach, and mechanically tilt the table until he's upright. That way he can practice putting weight on his feet without actually having to support his full body weight. He's also wiggling around in bed a lot. Enough movement to warrant moving his regular bed out and replacing it with a crib!
Our room is getting very crowded with our personal items and all the therapy equipment in here. We have a play mat for the floor, a rounded "log" he can sit on and work on balance, a seat and base we use for feeding and time out of the bed, a wheelchair, a medieval looking contraption that I'll be shown how to properly use so he can stand in that (similar to the tilt table) and I can push him around in the hallways. I've bought two storage bins with drawers. A large one in the room holds therapy toys and a smaller one in the bathroom has his feeding supplies (sippy cups, spoons, straws, dish detergent and other washing supplies).
As far as what Eli eats, I'm allowed to order him anything pureed and we're working on solids. So far we've tested Goldfish crackers (he loves and demands them at each meal and for snacks...thankful the hospital has a seemingly endless supply of these available!). Today he had pancakes (or "pan-takes" as he calls them). He did great with those. I've been given the okay to let him have those when it's just me present as well. A patient on the unit offered Eli one of her chicken nuggets one day and he's asked for nuggets for the last two days. We may get to try some non-pureed meat in the coming week. All his liquids have to be thickened to nectar consistency. To do that, we add one pouch of SimplyThick to four ounces of liquid. He's taking juice and Gatorade really well, but isn't a fan of milk that way.
If you had told me when I was in Washington last weekend that in the next seven days Eli would progress to eating pancakes and possibly getting to try meat in the next few days I would have laughed in your face! He is doing so, so well!
By celebrating all that he has done in the past two weeks, I am not trying to diminish the long road he has ahead. There's still a lot he needs to work on. He can't sit up alone, he needs more head control, and many other things. I'm just choosing to focus on what he can do rather than what he can't. It's amazing to watch him progress. If this had happened to most adults, we'd focus on the things we're no longer able to do. The "benefit" of this happening to a child is that s/he doesn't think that way. Eli just knows what he wants to do and he'll work toward getting that task accomplished.
Our goals for the coming week are to get on a set schedule of therapies and of course make more improvements. The days are long with lots of effort (from both of us) and the evenings fly by. Usually once Eli is asleep, I'm able to take my shower, wash his bottles, pacis, and teething toys, and grab a snack (it's hard to eat in front of him since we're not on similar diets). Once that is done, I'm nearly falling over with fatigue. He's been sleeping pretty well though the night, but we have to make sure he changes his position every two hours so we can prevent bedsores.
There's so much I want to write about, but it's very late and the Monday morning speech therapy session is quickly approaching. I want to tell you about the Pizza Hut fundraiser, Zachary's basketball game, Eli's therapy progression, the great story in the Washington Times Herald about Eli, and share some pictures. None of that is happening tonight. I'll just say that from the numbers we have from Friday's fundraiser is mind blowing. We'll post more information about that as it comes available to us. We're so thankful for all of that support.
Specific Prayer Requests:
- Eli continues to make improvements as time passes
- we get more information about therapies and benefits available to us once we're out of the hospital and back home (it will be a long time, but it will take a while to get things in place also)
- that Eli and I both get the rest we need
- for our family as we miss having the four of us together
Thank you all!
Wednesday, February 5, 2014
Ways to Help Eli
I know I haven't given much in the way of updates lately, but that will be coming. Most of the news is good news and we've been very busy! This post is a reminder about the fundraisers happening for Eli. Here is a list of ways to help:
Pizza Hut Day Friday February 7 (all day)
Washington's Pizza Hut will donate 20% of the profits from any regular priced order that day. For your order to qualify all you have to do is have a voucher (which is free) or use the online coupon code "Eli" If you need a voucher, you can pick one up at Memories radio station, The Daviess County Abstract Co, Fast Max, or by calling Linda Veale (812-698-7466), Betty Norris (812-254-6502), or Kendra Veale (812-486-5316). You must have a voucher for your order to count toward Eli's MVPs and coupons/discounts cannot be combined with it.
This fundraiser is good at Washington's Pizza Hut only. If you're placing an online order, that coupon code will work at any NPC owned Pizza Hut. To see if your local Pizza Hut is owned by that company, use this web site (http://www.npcinternational.com/customers/finder) or click HERE, enter your state and see what restaurants participate. Again, the paper vouchers are only good for Washington's Pizza Hut, but the online coupon code is good at any NPC owned Pizza Hut.
Pizza Hut Coupon Cards
These cards are ten dollars each and Eli's MVPs gets to keep six of those ten dollars. The cards have twelve coupons. Each coupon is good for a free three topping medium pizza with a $15 purchase. Again these are good at Washington's Pizza Hut as well as any NPC owned Pizza Hut. Click HERE to find the restaurant closest to you.
Origami Owl
Consultant Cher Elliott is donating her commission to Eli's MVPs. In addition to that, an anonymous donor will match up to $500 from this fundraiser for Eli! To check out the Origami Owl line of personalized jewelry, go to her website (www.cherlynnelliott.origamiowl.com) or by clicking HERE. At checkout you need to enter the following code for your order to count to Eli's MVPs: ElisMVPFundraiser180616
Thirty-One
Tiffany Gilley has had an ongoing Thirty-One fundraiser for Eli since September. She is also donating her commission to Eli's MVPs and a lot of you have participated in this. Now the Spring catalogs are out and there are some really nice new products and prints available. To order, go to Tiffany's page (www.mythirtyone.com/tiffanygilley31) or click HERE. Find the "My Parties" tab and within that you'll find "Eli's MVPs Fundraiser" Use the Shop Now option to browse the catalog and order.
Eli's MVPs Tshirts and Hoodies
As always, we're selling Eli's tshirts and hoodies. They come in a variety of sizes and colors. Tshirts are $15, hoodies are $25, and add $2 for sizes 2X and larger. To order, contact us through Facebook or email us at elismvps@yahoo.com We do need payment prior to placing your order.
Kettle Corn
My cousin Sheena is popping kettle corn and selling it for $5/bag. If you'd like to buy some you can contact her via Facebook (Sheena Wagler) or call her at 812-787-1557. Mmmmm :)
Bracelets
We do not have these yet, but we designed and have ordered them. Sometime in the next week or so, we will have rubber bracelets available for sale. They are blue and red with white lettering ("Eli's MVPs" and "Congenital Heart Defect Awareness") and will be $3 each. We will be able to mail these for an additional dollar (so they don't go through the sorting machine at the post office). When they're available, we'll take orders through our Facebook pages and elismvps@yahoo.com
Donating
Many have expressed wanting to help by just making a donation. Bethel United Methodist Church and First Federal Saving Bank have set up an account for Eli. Checks made out to Bethel UM Church with a memo or note of "Eli's Love Fund" can be mailed to
We are so thankful for everyone who has been working so hard to get the news out about these fundraisers, to everyone involved with setting them up because that is a lot of work, and to everyone who has donated or plans to through any of these methods. We are so humbled by the outpouring of support. From all four of us, THANK YOU!
Pizza Hut Day Friday February 7 (all day)
Washington's Pizza Hut will donate 20% of the profits from any regular priced order that day. For your order to qualify all you have to do is have a voucher (which is free) or use the online coupon code "Eli" If you need a voucher, you can pick one up at Memories radio station, The Daviess County Abstract Co, Fast Max, or by calling Linda Veale (812-698-7466), Betty Norris (812-254-6502), or Kendra Veale (812-486-5316). You must have a voucher for your order to count toward Eli's MVPs and coupons/discounts cannot be combined with it.
This fundraiser is good at Washington's Pizza Hut only. If you're placing an online order, that coupon code will work at any NPC owned Pizza Hut. To see if your local Pizza Hut is owned by that company, use this web site (http://www.npcinternational.com/customers/finder) or click HERE, enter your state and see what restaurants participate. Again, the paper vouchers are only good for Washington's Pizza Hut, but the online coupon code is good at any NPC owned Pizza Hut.
Pizza Hut Coupon Cards
These cards are ten dollars each and Eli's MVPs gets to keep six of those ten dollars. The cards have twelve coupons. Each coupon is good for a free three topping medium pizza with a $15 purchase. Again these are good at Washington's Pizza Hut as well as any NPC owned Pizza Hut. Click HERE to find the restaurant closest to you.
Origami Owl
Consultant Cher Elliott is donating her commission to Eli's MVPs. In addition to that, an anonymous donor will match up to $500 from this fundraiser for Eli! To check out the Origami Owl line of personalized jewelry, go to her website (www.cherlynnelliott.origamiowl.com) or by clicking HERE. At checkout you need to enter the following code for your order to count to Eli's MVPs: ElisMVPFundraiser180616
Thirty-One
Tiffany Gilley has had an ongoing Thirty-One fundraiser for Eli since September. She is also donating her commission to Eli's MVPs and a lot of you have participated in this. Now the Spring catalogs are out and there are some really nice new products and prints available. To order, go to Tiffany's page (www.mythirtyone.com/tiffanygilley31) or click HERE. Find the "My Parties" tab and within that you'll find "Eli's MVPs Fundraiser" Use the Shop Now option to browse the catalog and order.
Eli's MVPs Tshirts and Hoodies
As always, we're selling Eli's tshirts and hoodies. They come in a variety of sizes and colors. Tshirts are $15, hoodies are $25, and add $2 for sizes 2X and larger. To order, contact us through Facebook or email us at elismvps@yahoo.com We do need payment prior to placing your order.
Kettle Corn
My cousin Sheena is popping kettle corn and selling it for $5/bag. If you'd like to buy some you can contact her via Facebook (Sheena Wagler) or call her at 812-787-1557. Mmmmm :)
Bracelets
We do not have these yet, but we designed and have ordered them. Sometime in the next week or so, we will have rubber bracelets available for sale. They are blue and red with white lettering ("Eli's MVPs" and "Congenital Heart Defect Awareness") and will be $3 each. We will be able to mail these for an additional dollar (so they don't go through the sorting machine at the post office). When they're available, we'll take orders through our Facebook pages and elismvps@yahoo.com
Donating
Many have expressed wanting to help by just making a donation. Bethel United Methodist Church and First Federal Saving Bank have set up an account for Eli. Checks made out to Bethel UM Church with a memo or note of "Eli's Love Fund" can be mailed to
Bethel United Methodist Church
PO Box 791
Washington, IN 47501
They will take care of depositing the donation and getting the funds to us as necessary. We are so thankful for everyone who has been working so hard to get the news out about these fundraisers, to everyone involved with setting them up because that is a lot of work, and to everyone who has donated or plans to through any of these methods. We are so humbled by the outpouring of support. From all four of us, THANK YOU!
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