Yesterday morning I had Ethan's ETR meeting at school. This went over our basic hopes, plans, and expectations for his school year. I also was able to meet all of his specialists (OT, interventional specialists, speech, teachers, nurses, etc). This will all help in creating his IEP that we will discuss next month.
The meeting went well. I was able to discuss with them some of my concerns that I have. They were also able to let me know how things were going so far with school. OT evaluated him and does not think he needs to meet with her! His fine motor skills are great and he doesn't seem to have any problems with that aspect. She will keep him on the list for random evaluations throughout the year. If needed, he can meet with her for OT at a later point this year.
The teachers do feel he needs extra help with his core subjects (reading and math). Interventional specialists will help him out with that in his classroom. We all think this will really help him out. Everyone is thinking that he can get caught up with just some extra help now that his ADHD has improved a bit. This should help him concentrate and focus on learning the new material - and all the stuff that he missed from not paying attention in preschool!
His speech therapy is going well. He has a really nice therapist and he likes her. Hopefully they can continue to make great progress this year!
We also discussed his social issues. I asked how his socialization was going, and they said basically it is not. He avoids people at all costs and refuses to interact. :( They gave me a bunch of examples like during stations in class, Ethan will pick the station that has nobody there so he can work by himself. The other stations all have small groups of kids. When the class is in line to walk somewhere in the school, Ethan goes to the back of the line and leaves a space between him and the kid in front of him. He refuses to go outside for recess (even on nice weather days) because he'd rather go to the clinic and draw pictures. They asked me if I wanted them to force him to go outside, but I said no. I'd rather he relax and have that chance to de-stress from the day. I know he is not comfortable participating in all the activities with other people, so I think having that break is helpful for him. I hope it's the right choice. I know that once it gets too cold outside, all the kids will stay in for recess. That will give Ethan a chance to do other activities with them and not have the choice to leave and color by himself.
I ask Ethan a lot about who he is talking to at school and try to encourage him to pick a friend to talk to that day. The other day he finally told me he talked to David that day. I was excited obviously. I mentioned it to his teacher at the meeting and she laughed. She said no way, they never talk. David just gets in trouble a lot and so Ethan probably just remembered that name. Apparently Ethan was just throwing out a name to get me to stop harassing him about being social! :/ That kid!
One of the school workers did comment that he is improving a bit though. She sees him drawing every day in the clinic. She always pokes her head in to say hi to him and ask him what he's coloring. He never acknowledged her in the past. He wouldn't make eye contact, answer her, or anything. But a few days ago he looked at her and said he was drawing trucks! Hopefully that means he's relaxing and feeling comfortable. I hope this improvement continues and a lot more quickly!
His teacher also mentioned that he's improving during group participation. Up until recently he wouldn't sing along with the songs or participate during circle time. Now he sings and does the motions to all the things they're doing! :) She said he seems to be enjoying himself a lot more now.
The teachers have also noticed that he doesn't eat at lunch. Most of the time he'll just throw away his entire uneaten lunch (even though I've asked him a million times to bring it back home so I can reuse some of the snacks and see what he's eaten that day)! Today he claims to have eaten his lunch, so hopefully he actually did.
That pretty much summed it up for the meeting. He's doing pretty well in school and doesn't seem to have all the anxiety that he had last year - at least not panicking and saying he doesn't want to go. That's a huge relief! Hopefully he'll continue to loosen up there and improve socially as well as academically. A therapist mentioned that there's a program not too far away called "Fit" that helps kids with social issues. She's going to get some information for me and we'll see if that would work out for Ethan. She says she's only heard wonderful reviews about it!
Medically, we have a neurology appointment coming up on Monday. We weren't supposed to return until December, but they called yesterday and want to see him sooner. He's now up to his full dose of Periactin (the headache medicine). It has definitely helped the headaches, but not taken them away completely yet. Granted he just started the full dose two days ago, so hopefully things will improve as we give it a little more time. He's down to about 3 headaches a week. I've seen a slight improvement with his eating (mainly just that he's eating breakfast now). But still we have a lot of room to go obviously since he struggles with dinners and apparently doesn't eat lunch.
I still have not heard from cardiology about his upcoming cath. I'll probably email them next week if I haven't heard anything by that point.
His cough is sounding a LOT better. We're still doing the breathing treatments and still on the amoxicillin. It seems to be helping so that is a huge relief. We'll return to the pediatrician in another week to do a recheck on his lungs.
As for Fiona, I took her to the vet last week about her eye. She apparently has something called "cherry eye". She'll need surgery from a canine ophthalmologist to get it fixed. I had to pick up prescription eye medicine to keep her eye lubricated until surgery. She doesn't like it at all, but oh well!
That's pretty much what's been going on. We're just keeping busy with school, work, soccer, and appointments. Please keep us in your prayers and I will let you know how the neurology appointment goes!
Friday, September 27, 2013
Wednesday, September 18, 2013
pediatrician
Ethan had his 6-year checkup at the pediatrician's office yesterday. Overall it went fairly well.
We went over the fact that he definitely needs to work on improving his social skills quite a bit more. He acts more like a grumpy antisocial teenager than a happy little 6-year-old! *sigh*
His weight was 42.5 pounds leaving him around the 35th percentile for weight. He was also around the 27th percentile for height. He grew 3 inches from last year. The chart showed his height sticking right about the same percentile as last year - just a little less. His weight dropped from 48th percentile down to the 35th. She wasn't overly concerned about it, but it still definitely concerns me! At least he is still growing, so that's a relief.
She listened to his lungs and they are once again terrible. Both lungs are completely junky and wet. His lower left lobe isn't moving any air again. It appears the pneumonia has returned. We started antibiotics last night to clear up any lung infection/pneumonia. She's also ordering the exact bronch results from last year when he had the positive H Flu. She thinks he might just be chronically getting that. When the results come back with the antibiotic that they used to clear it up, we'll switch over to that. It should take a few days to get the results most likely. Hopefully it's one of the meds that Ethan can take without gagging. He really hates liquid meds because the taste is just too much for him. This is especially true with antibiotics. His amoxicillin (that he's on now) is one of the only ones he can handle easily. Hopefully they'll let us just stick with this and it will clear up his lungs. We're still doing the vest therapy and inhaled breathing treatments to help clear things up.
Both kids got their flu shots at the doctor, and Ethan also had his immunizations. He was not happy about that! The poor boy's arms hurt him so bad he was up all throughout the night. He is so sensitive to shots in the arms - it's surprising because his pain tolerance is incredibly high! He says his arms hurt way worse than his eye even did! Hopefully they will loosen up throughout the day and start feeling better soon.
Both kids picked up their new glasses after the doctor appointment. They are very happy with them. :)
And...it appears Fiona got an eye injury as well! We're not sure what happened, but maybe the cat swiped her in the eye. She definitely has to learn that the cat does NOT appreciate when Fiona pounces on her! Poor thing, I just hope it heals up quickly and easily! Ew.
Moose was sad he was being left out of the photo sessions, so here he is. :)
He's much happier now.
We still have no news from cardiology about the upcoming cath. I'll have to let them know about his lungs. We're definitely trying to get him clear by October so his lungs are as healthy as possible for his surgeries!
We went over the fact that he definitely needs to work on improving his social skills quite a bit more. He acts more like a grumpy antisocial teenager than a happy little 6-year-old! *sigh*
His weight was 42.5 pounds leaving him around the 35th percentile for weight. He was also around the 27th percentile for height. He grew 3 inches from last year. The chart showed his height sticking right about the same percentile as last year - just a little less. His weight dropped from 48th percentile down to the 35th. She wasn't overly concerned about it, but it still definitely concerns me! At least he is still growing, so that's a relief.
She listened to his lungs and they are once again terrible. Both lungs are completely junky and wet. His lower left lobe isn't moving any air again. It appears the pneumonia has returned. We started antibiotics last night to clear up any lung infection/pneumonia. She's also ordering the exact bronch results from last year when he had the positive H Flu. She thinks he might just be chronically getting that. When the results come back with the antibiotic that they used to clear it up, we'll switch over to that. It should take a few days to get the results most likely. Hopefully it's one of the meds that Ethan can take without gagging. He really hates liquid meds because the taste is just too much for him. This is especially true with antibiotics. His amoxicillin (that he's on now) is one of the only ones he can handle easily. Hopefully they'll let us just stick with this and it will clear up his lungs. We're still doing the vest therapy and inhaled breathing treatments to help clear things up.
Both kids got their flu shots at the doctor, and Ethan also had his immunizations. He was not happy about that! The poor boy's arms hurt him so bad he was up all throughout the night. He is so sensitive to shots in the arms - it's surprising because his pain tolerance is incredibly high! He says his arms hurt way worse than his eye even did! Hopefully they will loosen up throughout the day and start feeling better soon.
Both kids picked up their new glasses after the doctor appointment. They are very happy with them. :)
 |
| Ethan's are black with lime green inside. |
 |
| Callie's are purple. |
And...it appears Fiona got an eye injury as well! We're not sure what happened, but maybe the cat swiped her in the eye. She definitely has to learn that the cat does NOT appreciate when Fiona pounces on her! Poor thing, I just hope it heals up quickly and easily! Ew.
Moose was sad he was being left out of the photo sessions, so here he is. :)
He's much happier now.
We still have no news from cardiology about the upcoming cath. I'll have to let them know about his lungs. We're definitely trying to get him clear by October so his lungs are as healthy as possible for his surgeries!
Wednesday, September 11, 2013
Cardiology appointment
Today we spent the day at the cardiologist. We went over a LOT of things, so I'll try and recap here.
When we got off the elevator we ran into our heart friends! It was really great seeing them and catching up. Vivian is Ethan's heart friend who has the same condition (Heterotaxy) as Ethan! :) She is so adorable and we loved being able to see them!
We started off the appointment with an echo. It seemed to go well, but she did spend a lot of time focusing on his heart beat pattern and pressures. They didn't mention anything about it though, so apparently things seem to be okay.
Ethan's oxygen saturations maxed out at 63% today. That's definitely getting low on our comfort threshold, so we knew that it was definitely time for an intervention. We discussed reasons why he is that low all the time. The docs are wondering if he maybe has pulmonary vein stenosis (PVS). This is something we'll keep an eye out for, but just don't know yet. We don't think that's really the case, but it's a possibility. I certainly hope not. They also wondered if we should start looking at doing interventions on Ethan's pulmonary veins since they are narrowed. Dr. Z is wondering if we should start that up, but Dr. G is not really wanting to go down that road just yet. He said that once we start messing with those, it'll be a constant battle to keep them open. That'll just add to the difficulties that we're having trying to keep his heart veins open! Just another thing to add to the list of things to keep an eye on. Other thoughts that were thrown around were to have Ethan on oxygen throughout the night and/or start using nitric oxide to try and open his pulmonary veins a bit. We're not going to start that yet, but it's an option for the future.
I let them know about Ethan's headaches worsening especially lately. The night before the first day of school he had one. Since then he's had headaches 4-5 days a week! All of a sudden it just got so much worse! I don't know what the reason is -- maybe waking up earlier in the day, stress from school, or who knows what. We discussed the pros and cons, and decided that it's time to start the headache medicine after all. We filled the prescription and started taking Periactin this evening. I pray this helps him out. This is also the med that has the side effect of increased appetite and weight gain! YAY! He weighs exactly the same as he did last May. He had gained weight, but then lost it all this summer. Hopefully this will make a big difference for him!
Next we discussed what the plans are coming up. We are going to do a heart cath and we are aiming for October to do it. The plan is to go in and see the pulmonary artery where we put the covered stent in last time. We are able to see blood flow in the center of the stent, but the outsides are not clear. We're not sure if Ethan is narrowing around the edges of the stent. He will look at that spot and see what needs to be done to open it up. He also will place a stent in Ethan's SVC. This is the area in his neck that is severely narrowed. The last spot that he mentioned is working on his conduit again. I was under the impression that we weren't going to touch that again after it cracked last time, but apparently I was wrong. The docs are going to look into getting permission to use another covered stent for his conduit. This will be the larger one that we used last time and it is not FDA approved yet. Because of this we have to seek "compassionate care" permission and get approval before acquiring the stent. Because it was an emergency situation last time they placed the covered stent they weren't able to really open it up as much as they wanted. Now they'll go in and open the conduit up more. We just have to pray that we can get the stent approved, as well as the safety for Ethan when placing it.
We are also going to get a lot of bloodwork done. They checked Ethan's liver and it has increased dramatically since our last appointment. It is now greater than 4cm. That is usually a major sign of heart failure, so we are going to check a bunch of levels to see how his heart is doing.
Dr. Z took pictures of Ethan's eye and asked permission to use him as a teaching example for trauma patients who take anticoagulants. Of course I said yes. We also took pictures with Dr. G and Dr. Z :) We love these doctors!
Also...Ethan's wet cough has returned. :( Just last month the doctors were amazed at how great his lungs sounded - the best they've ever heard him! Now we're full force with his vest and all 3 breathing treatment meds. :( Hopefully we can get this to go away, but usually it will stick around till next summer.
On the way out, Ethan spotted the statue of a man made out of metal letters that he loves. We usually walk by it on the other side so we don't see the wall of letters, but this time we were heading up to neurology to get the headache med prescription. He saw this and wanted a picture. :)
All in all it was a very productive day. Hopefully his headaches improve with this medicine, and I hope his appetite improves as well! We ordered new glasses yesterday, so we're waiting for them to come in for both kids. He also has class pictures on Friday so that should be fun. :)
And just for some puppy pictures from this morning. Fiona is growing so quickly and we all love her - but she sure is NAUGHTY! She shredded Callie's homework yesterday, constantly destroys anything and everything she can find, and is apparently not too concerned with being housetrained. :/ She's lucky she's cute and snuggly!
Thanks for all the prayers and support! I'll let you know how things are going and once I hear a date and finalized plans from cardiology.
When we got off the elevator we ran into our heart friends! It was really great seeing them and catching up. Vivian is Ethan's heart friend who has the same condition (Heterotaxy) as Ethan! :) She is so adorable and we loved being able to see them!
We started off the appointment with an echo. It seemed to go well, but she did spend a lot of time focusing on his heart beat pattern and pressures. They didn't mention anything about it though, so apparently things seem to be okay.
Ethan's oxygen saturations maxed out at 63% today. That's definitely getting low on our comfort threshold, so we knew that it was definitely time for an intervention. We discussed reasons why he is that low all the time. The docs are wondering if he maybe has pulmonary vein stenosis (PVS). This is something we'll keep an eye out for, but just don't know yet. We don't think that's really the case, but it's a possibility. I certainly hope not. They also wondered if we should start looking at doing interventions on Ethan's pulmonary veins since they are narrowed. Dr. Z is wondering if we should start that up, but Dr. G is not really wanting to go down that road just yet. He said that once we start messing with those, it'll be a constant battle to keep them open. That'll just add to the difficulties that we're having trying to keep his heart veins open! Just another thing to add to the list of things to keep an eye on. Other thoughts that were thrown around were to have Ethan on oxygen throughout the night and/or start using nitric oxide to try and open his pulmonary veins a bit. We're not going to start that yet, but it's an option for the future.
I let them know about Ethan's headaches worsening especially lately. The night before the first day of school he had one. Since then he's had headaches 4-5 days a week! All of a sudden it just got so much worse! I don't know what the reason is -- maybe waking up earlier in the day, stress from school, or who knows what. We discussed the pros and cons, and decided that it's time to start the headache medicine after all. We filled the prescription and started taking Periactin this evening. I pray this helps him out. This is also the med that has the side effect of increased appetite and weight gain! YAY! He weighs exactly the same as he did last May. He had gained weight, but then lost it all this summer. Hopefully this will make a big difference for him!
Next we discussed what the plans are coming up. We are going to do a heart cath and we are aiming for October to do it. The plan is to go in and see the pulmonary artery where we put the covered stent in last time. We are able to see blood flow in the center of the stent, but the outsides are not clear. We're not sure if Ethan is narrowing around the edges of the stent. He will look at that spot and see what needs to be done to open it up. He also will place a stent in Ethan's SVC. This is the area in his neck that is severely narrowed. The last spot that he mentioned is working on his conduit again. I was under the impression that we weren't going to touch that again after it cracked last time, but apparently I was wrong. The docs are going to look into getting permission to use another covered stent for his conduit. This will be the larger one that we used last time and it is not FDA approved yet. Because of this we have to seek "compassionate care" permission and get approval before acquiring the stent. Because it was an emergency situation last time they placed the covered stent they weren't able to really open it up as much as they wanted. Now they'll go in and open the conduit up more. We just have to pray that we can get the stent approved, as well as the safety for Ethan when placing it.
We are also going to get a lot of bloodwork done. They checked Ethan's liver and it has increased dramatically since our last appointment. It is now greater than 4cm. That is usually a major sign of heart failure, so we are going to check a bunch of levels to see how his heart is doing.
Dr. Z took pictures of Ethan's eye and asked permission to use him as a teaching example for trauma patients who take anticoagulants. Of course I said yes. We also took pictures with Dr. G and Dr. Z :) We love these doctors!
Also...Ethan's wet cough has returned. :( Just last month the doctors were amazed at how great his lungs sounded - the best they've ever heard him! Now we're full force with his vest and all 3 breathing treatment meds. :( Hopefully we can get this to go away, but usually it will stick around till next summer.
On the way out, Ethan spotted the statue of a man made out of metal letters that he loves. We usually walk by it on the other side so we don't see the wall of letters, but this time we were heading up to neurology to get the headache med prescription. He saw this and wanted a picture. :)
All in all it was a very productive day. Hopefully his headaches improve with this medicine, and I hope his appetite improves as well! We ordered new glasses yesterday, so we're waiting for them to come in for both kids. He also has class pictures on Friday so that should be fun. :)
And just for some puppy pictures from this morning. Fiona is growing so quickly and we all love her - but she sure is NAUGHTY! She shredded Callie's homework yesterday, constantly destroys anything and everything she can find, and is apparently not too concerned with being housetrained. :/ She's lucky she's cute and snuggly!
Thanks for all the prayers and support! I'll let you know how things are going and once I hear a date and finalized plans from cardiology.
Friday, September 6, 2013
ER
We had a pretty exciting past two days! After dinner yesterday, Ethan went upstairs to play while I cleaned up the kitchen. I heard crying, but he was in a bad mood so I figured he broke a toy or something and was angry. He stopped crying after about two minutes then walked downstairs to tell me he had a headache. I looked at him and saw this:
After my initial moment of shock, I threw the kids in the car and headed for the urgent care/emergency room. I got the story from him that he was walking (but he HAD to have been at least running) and ran right into the side of a bookcase. I figured it'd be best to make sure he was okay and get any stitches if needed. Better to be safe than sorry.
When we arrived they did a CT scan of his brain. Ethan was so brave and did so well during this even though he was so scared. They allowed me to hold his hand and comfort him throughout the scan, so that was a huge blessing. This was the first CT he's been able to do without loads of sedatives! The radiologist immediately called me in the back room and showed me white spots on the base of his brain. He said it looks like he has a brain bleed. After some deliberation they decided to transport us to another hospital that specializes in brain injuries and neurosurgery. We have never been to this hospital so of course I wasn't thrilled at all with this idea. Ethan was acting like his normal self so I didn't really see tremendous danger. I was really nervous about him being treated by people that don't know him at all. I called Dr. Z (our cardiologist) and let him know what was going on. He also was shocked and angry that they weren't going to send him to the Clinic where we normally go. He told me to use my best judgment in what I let the doctors do. If anything seemed wrong, he told me to make sure that we get him to our hospital immediately. The opportunity came up right away when the ER docs wanted to give him meds to counteract his Coumadin. They wanted to stop whatever bleeding was happening in his brain. Thankfully we vetoed that since that could have had horrible consequences with clotting off the stents in his heart.
After a short time the Life Flight helicopter arrived to take us downtown. Ethan was obviously scared and anxious, but it was pretty exciting. Luckily I was able to ride along - even though there was a question about it since they didn't have a chance to refuel before our trip. *gulp* That made me extremely nervous during the flight! Thankfully it was a quick and uneventful ride. The transport team was amazing with Ethan and kept him as calm as possible for the trip. Ethan told me to take pictures so he could show his class. Unfortunately these were the best I could get in the lighting and bumpiness. :(
We arrived at the hospital and sat in the ER for hours waiting for a room for the night. The neurosurgery team met with us and reviewed his scans. They said it did NOT look like a brain bleed! Praise the Lord! I was so relieved! Apparently the white spots were a thickening of the skull that is common in children. They still wanted to observe him overnight though and make sure he was okay.
We got to our room around 3am, then had to wait for his meds for another 30-40 minutes. We finally were able to fall asleep even though they had to wake him up to do neurological tests every 2 hours. At 7:30am he was up for the day and feeling pretty good - surprisingly even with that little sleep. We did some morning meds (only the cardiac ones) and then ate some breakfast. They wouldn't give him his Aspirin or Adderall meds since they weren't written up critical ones for his heart.
A teacher at the hospital came to our room to work with Ethan on his kindergarten activities. Ethan definitely was bored and wanted to have something to do, but still didn't want that to be education! He was a bit ornery and refused to work on letters and numbers with her. He would only play games (Memory and puzzles) and draw pictures. He wouldn't even let her read a book to him while he colored. Grumpy little man!
After she left, Child Life delivered some Legos and more paper for him to use. They wouldn't let him leave to go to the playroom much to his dismay. They said we had to wait for the docs to round and say it was okay. They never bothered coming until 5 minutes before we were discharged! Ethan was not happy about that - and neither was I!
After a LOT of waiting around all day, finally they discharged us! We have to return to neurosurgery for an evaluation in 2 weeks. We'll probably just go to our current neurologist since he knows Ethan. We also have our cardiology appointment coming up on the 11th. By the time we got home Ethan was beyond exhausted. I made him take a bath, but he complained of feeling awful. He was getting a slight temperature (100-101F), shivering, saying his stomach/heart hurt, and his head hurt. I think it mainly was just sheer exhaustion after so much happening and such little sleep. I put him down to sleep and he was out at 7:45pm! I pray that he sleeps through the night and wakes up feeling healthy and good again. He had such a good day today that I really hope he doesn't get sick or anything at this point!
Please keep us in your prayers. I am so thankful to you all who were following us on Facebook and praying for us! I also thank my family for taking Callie home from the ERs, keeping her overnight and making sure she got to school and picked up after school today, and for driving me and Ethan back to my car from the hospital today! I'm so lucky to have all my family, friends, and church around who will help with whatever I need - thank you!
I'm going to try and get some sleep since I'm pretty exhausted too! I can't wait for John to get back home tomorrow - he's been in South Dakota this week. We've certainly missed him especially with all this going on this week!
I'm also hoping his face heals up fairly quickly since we received the notice for Kindergarten pictures! They will probably be next week. Eek! Should be interesting school pics this year!
After my initial moment of shock, I threw the kids in the car and headed for the urgent care/emergency room. I got the story from him that he was walking (but he HAD to have been at least running) and ran right into the side of a bookcase. I figured it'd be best to make sure he was okay and get any stitches if needed. Better to be safe than sorry.
When we arrived they did a CT scan of his brain. Ethan was so brave and did so well during this even though he was so scared. They allowed me to hold his hand and comfort him throughout the scan, so that was a huge blessing. This was the first CT he's been able to do without loads of sedatives! The radiologist immediately called me in the back room and showed me white spots on the base of his brain. He said it looks like he has a brain bleed. After some deliberation they decided to transport us to another hospital that specializes in brain injuries and neurosurgery. We have never been to this hospital so of course I wasn't thrilled at all with this idea. Ethan was acting like his normal self so I didn't really see tremendous danger. I was really nervous about him being treated by people that don't know him at all. I called Dr. Z (our cardiologist) and let him know what was going on. He also was shocked and angry that they weren't going to send him to the Clinic where we normally go. He told me to use my best judgment in what I let the doctors do. If anything seemed wrong, he told me to make sure that we get him to our hospital immediately. The opportunity came up right away when the ER docs wanted to give him meds to counteract his Coumadin. They wanted to stop whatever bleeding was happening in his brain. Thankfully we vetoed that since that could have had horrible consequences with clotting off the stents in his heart.
After a short time the Life Flight helicopter arrived to take us downtown. Ethan was obviously scared and anxious, but it was pretty exciting. Luckily I was able to ride along - even though there was a question about it since they didn't have a chance to refuel before our trip. *gulp* That made me extremely nervous during the flight! Thankfully it was a quick and uneventful ride. The transport team was amazing with Ethan and kept him as calm as possible for the trip. Ethan told me to take pictures so he could show his class. Unfortunately these were the best I could get in the lighting and bumpiness. :(
We arrived at the hospital and sat in the ER for hours waiting for a room for the night. The neurosurgery team met with us and reviewed his scans. They said it did NOT look like a brain bleed! Praise the Lord! I was so relieved! Apparently the white spots were a thickening of the skull that is common in children. They still wanted to observe him overnight though and make sure he was okay.
We got to our room around 3am, then had to wait for his meds for another 30-40 minutes. We finally were able to fall asleep even though they had to wake him up to do neurological tests every 2 hours. At 7:30am he was up for the day and feeling pretty good - surprisingly even with that little sleep. We did some morning meds (only the cardiac ones) and then ate some breakfast. They wouldn't give him his Aspirin or Adderall meds since they weren't written up critical ones for his heart.
A teacher at the hospital came to our room to work with Ethan on his kindergarten activities. Ethan definitely was bored and wanted to have something to do, but still didn't want that to be education! He was a bit ornery and refused to work on letters and numbers with her. He would only play games (Memory and puzzles) and draw pictures. He wouldn't even let her read a book to him while he colored. Grumpy little man!
After she left, Child Life delivered some Legos and more paper for him to use. They wouldn't let him leave to go to the playroom much to his dismay. They said we had to wait for the docs to round and say it was okay. They never bothered coming until 5 minutes before we were discharged! Ethan was not happy about that - and neither was I!
After a LOT of waiting around all day, finally they discharged us! We have to return to neurosurgery for an evaluation in 2 weeks. We'll probably just go to our current neurologist since he knows Ethan. We also have our cardiology appointment coming up on the 11th. By the time we got home Ethan was beyond exhausted. I made him take a bath, but he complained of feeling awful. He was getting a slight temperature (100-101F), shivering, saying his stomach/heart hurt, and his head hurt. I think it mainly was just sheer exhaustion after so much happening and such little sleep. I put him down to sleep and he was out at 7:45pm! I pray that he sleeps through the night and wakes up feeling healthy and good again. He had such a good day today that I really hope he doesn't get sick or anything at this point!
Please keep us in your prayers. I am so thankful to you all who were following us on Facebook and praying for us! I also thank my family for taking Callie home from the ERs, keeping her overnight and making sure she got to school and picked up after school today, and for driving me and Ethan back to my car from the hospital today! I'm so lucky to have all my family, friends, and church around who will help with whatever I need - thank you!
I'm going to try and get some sleep since I'm pretty exhausted too! I can't wait for John to get back home tomorrow - he's been in South Dakota this week. We've certainly missed him especially with all this going on this week!
I'm also hoping his face heals up fairly quickly since we received the notice for Kindergarten pictures! They will probably be next week. Eek! Should be interesting school pics this year!
Monday, September 2, 2013
First week of school!
The night before the first day of school, we decided to go out and have a little last minute fun. We hit a mini golf spot near our house. I was surprised at how well Ethan did! We might have a little golfer on our hands someday. :) At least that's a sport he'll be allowed to do! He was even able to pay attention and play the entire course -- something he never was able to do before his ADHD meds started!
School has started! Callie started 5th grade and Ethan started kindergarten! So far they are loving it!
We spent multiple meetings going over everything Ethan would need for a successful school year. I dropped off a bunch of necessary medical equipment for him - pulse ox monitor, oxygen, meds, etc. Hopefully he won't need it this year, but at least it's there just in case.
Since he's not allowed to participate in gym class this year, we had arranged for him to have speech therapy during one class and hopefully occupational therapy during the second. He's still going through the approval process for OT at the school, but that will hopefully only take a couple weeks. The school claimed they did not want Ethan to be excluded from gym entirely, so they wanted to see about figuring out a way for him to do some kind of gym class on the sidelines during the regular one. I don't know what they're talking about with that, but hopefully OT will come through quickly and he'll be preoccupied during gym class each week.
He's also not riding the school bus this year after all. He was supposed to, but the school district got a little too nervous with that idea. They were afraid that something would happen and the bus driver wouldn't have any help in taking care of him. They also worried since there's no oxygen or medical supplies on the regular bus. Instead, he has a school transportation van picking him up. He was pretty disappointed when we found that out, but it's going really well. The van pulls into our driveway so we don't even have to wait down by the street. And instead of an hour-long bus ride in the mornings, he only has to ride about 10 minutes! :) That's so much better!
I know they're being pretty conservative with him so far. He hasn't been outside for recess yet since it's been pretty warm here. Instead of going outside, he hangs out and colors in the school clinic. So far he is having fun and enjoying kindergarten, so that's such a blessing!
I know he was struggling a bit at lunchtime since he just is not outgoing enough. The first day of school Ethan brought his lunchbox home almost completely full. He was obviously hungry when he came home, so I asked him why he didn't eat at lunch. He said he couldn't open his food. I know there are lots of teachers and aides in the cafeteria that will help open snacks and stuff if he asked them. He just wouldn't ask, so instead he went hungry! I'm trying to give him as easy to open snacks as possible and still working on convincing him to get up and ask for help if he needs it! Hopefully he'll get used to it and do better!
Unfortunately, getting information out of him is difficult to say the least. I keep trying to convince him to tell me what he did each day, but I still have no idea what he's up to at school! LOL! I can't wait to talk to the teachers and find out how he's really doing!
Ethan received a package in the mail this past week. It was a "Heart Hero Cape" from Heart Heroes! It's a group that sends out hero capes to heart kids. Ethan loves it and was so excited when he opened the package! I need to get some better pictures of him in it, but at least you can see what it looks like.
As for the medical side of things, we've struggled a little bit this past week. Ethan has had multiple headaches since the night before school started. I don't know if it's stress, sleep, weather changes, or something else that's causing it. This weekend was pretty bad though. Friday after school Ethan complained about a headache. That night and two rounds of Tylenol later Ethan was still miserable. He kept saying his heart was hurting, but I think it was his stomach. The headache was so bad he couldn't sleep, was slightly feverish, couldn't get comfortable, and was nauseous. I'm wondering if it was a full-blown migraine for him. :( Hopefully the headaches calm down, but we'll definitely be discussing the new medicine at the cardiology appointment on the 11th. He's also doing terribly with his eating (he's lost almost 5 pounds this summer!) so maybe that medicine's side effects will be a major blessing for him! It apparently increases appetite and weight gain.
We have a pretty busy week coming up, so please keep us in your prayers - especially for Ethan to be healthy! I'll let you know how things progress with school and if anything happens before our next appointment.
 |
| The kids definitely enjoyed this hole! |
School has started! Callie started 5th grade and Ethan started kindergarten! So far they are loving it!
We spent multiple meetings going over everything Ethan would need for a successful school year. I dropped off a bunch of necessary medical equipment for him - pulse ox monitor, oxygen, meds, etc. Hopefully he won't need it this year, but at least it's there just in case.
Since he's not allowed to participate in gym class this year, we had arranged for him to have speech therapy during one class and hopefully occupational therapy during the second. He's still going through the approval process for OT at the school, but that will hopefully only take a couple weeks. The school claimed they did not want Ethan to be excluded from gym entirely, so they wanted to see about figuring out a way for him to do some kind of gym class on the sidelines during the regular one. I don't know what they're talking about with that, but hopefully OT will come through quickly and he'll be preoccupied during gym class each week.
He's also not riding the school bus this year after all. He was supposed to, but the school district got a little too nervous with that idea. They were afraid that something would happen and the bus driver wouldn't have any help in taking care of him. They also worried since there's no oxygen or medical supplies on the regular bus. Instead, he has a school transportation van picking him up. He was pretty disappointed when we found that out, but it's going really well. The van pulls into our driveway so we don't even have to wait down by the street. And instead of an hour-long bus ride in the mornings, he only has to ride about 10 minutes! :) That's so much better!
I know they're being pretty conservative with him so far. He hasn't been outside for recess yet since it's been pretty warm here. Instead of going outside, he hangs out and colors in the school clinic. So far he is having fun and enjoying kindergarten, so that's such a blessing!
I know he was struggling a bit at lunchtime since he just is not outgoing enough. The first day of school Ethan brought his lunchbox home almost completely full. He was obviously hungry when he came home, so I asked him why he didn't eat at lunch. He said he couldn't open his food. I know there are lots of teachers and aides in the cafeteria that will help open snacks and stuff if he asked them. He just wouldn't ask, so instead he went hungry! I'm trying to give him as easy to open snacks as possible and still working on convincing him to get up and ask for help if he needs it! Hopefully he'll get used to it and do better!
Unfortunately, getting information out of him is difficult to say the least. I keep trying to convince him to tell me what he did each day, but I still have no idea what he's up to at school! LOL! I can't wait to talk to the teachers and find out how he's really doing!
Ethan received a package in the mail this past week. It was a "Heart Hero Cape" from Heart Heroes! It's a group that sends out hero capes to heart kids. Ethan loves it and was so excited when he opened the package! I need to get some better pictures of him in it, but at least you can see what it looks like.
As for the medical side of things, we've struggled a little bit this past week. Ethan has had multiple headaches since the night before school started. I don't know if it's stress, sleep, weather changes, or something else that's causing it. This weekend was pretty bad though. Friday after school Ethan complained about a headache. That night and two rounds of Tylenol later Ethan was still miserable. He kept saying his heart was hurting, but I think it was his stomach. The headache was so bad he couldn't sleep, was slightly feverish, couldn't get comfortable, and was nauseous. I'm wondering if it was a full-blown migraine for him. :( Hopefully the headaches calm down, but we'll definitely be discussing the new medicine at the cardiology appointment on the 11th. He's also doing terribly with his eating (he's lost almost 5 pounds this summer!) so maybe that medicine's side effects will be a major blessing for him! It apparently increases appetite and weight gain.
We have a pretty busy week coming up, so please keep us in your prayers - especially for Ethan to be healthy! I'll let you know how things progress with school and if anything happens before our next appointment.
Saturday, August 10, 2013
Next update :) Sorry it's long!
Well here's the next update on our summer. We've been pretty busy this month with birthdays, summering, and doctor appointments!
First off, we got a pool! We've been really enjoying this, even though the weather has NOT been cooperating! I think we've had about one day of warmth and sunshine since we put it up! Oh well, at least it's heated. And maybe we'll get a few more days of good weather before school starts up!
Callie, Ethan, and I also had our birthdays this month! I can't believe Callie turned 10 and Ethan is now 6! They're just growing up so quickly! We were able to have family over to celebrate the kids' birthdays and we had a great time. :)
The kids also enjoyed their traditional birthday breakfasts. The night before their birthday they request the morning's meal. Then we just stick a candle in their breakfast and sing to them to start off the day right. :)
And another thing we did for birthday time was add to the family! Welcome to Fiona! She's our sweet little puppy - half English Bulldog and half Puggle. We all just love her and are so happy she's with us!
We also are in full gear getting ready for school to start up! I just can't believe Callie's going into 5th grade and Ethan's starting kindergarten! These will be such big years for them! We just got Callie's schedule and of course she got the teacher we were warned to avoid. Figures. She only has her for homeroom, science, and a language arts. The rest of her classes are switched around to various teachers, so hopefully she can just power through and make the best of the situation. I just pray that she does well and has a great year no matter who she gets! She has always done great at school and teachers love her. Hopefully that'll really help her with this year!
I've been trying to contact Ethan's school to update his IEP plan, create his 504 plan, and go over some regulations from the doctors. Unfortunately I can't seem to get in touch with anyone! I'm apparently going to have to really start hounding them a couple times a day starting Monday, because we have to get these things figured out before school starts!
Ethan also had some medical appointments recently. We went to the pulmonologist and got great news! He agreed with the pediatrician and said Ethan's lungs have never sounded this good! I'm so happy about this! We went over some of the lung scans again during the appointment. He mentioned that the atelectasis and bronchiectasis is actually in both the right and left lower lobes. We had thought previously it was just his left lower lobe. He brought up the lobectomy once again (surgically removing the lower lobes), but once again agreed that this would not really be safe due to all of his past surgeries, lung disease, and potential detriment to his body. I don't know why he keeps bringing that option up, but I really don't see us ever going down that road. He did mention about heart transplant though. He said he's working on ensuring the meds and treatments we're doing will help keep his lungs healthy enough to help make any future heart transplant successful. I asked him what he thought about his lungs accepting a new heart. He said (and I'm not sure he's really the one to know this instead of the transplant committee) that he might not need a full heart/lung transplant in the end. These lungs might actually be able to handle a new heart! I think it's way too early to tell just yet, and I also think that's mainly going to be the decision of the transplant team. But of course it's always nice to hear a positive outlook. :)
We went to the Pediatric Sleep Disorder Clinic for Ethan's sleep struggles. The appointment went really well and I'm so happy with how things are going. They diagnosed Ethan with Delayed Sleep Phase Syndrome. This basically means that his internal body clock was really delayed and we have a lot of work to get him back into the right schedule. They sent us home with a bunch of schedules to follow, charts to fill out, and an order to start taking Melatonin. The schedule is strict, but it's going so well! We're already down to tonight's bedtime of 9:45! The goal is to have Ethan fall asleep at 9pm and wake up at 7am - all while sleeping through the night. I pray that this happens, and I'm so relieved that it's going well so far. He's only had about three nights where he's woken up in the middle of the night or struggled falling asleep. :)
We also saw neurology as a follow up to the ADHD appointment and his headaches. They did another assessment with Ethan and think he'll benefit from more therapy. They wrote up an order for him to start back with occupational therapy and additional speech therapy. Insurance denied the therapies, so now I am trying to change his insurance. Otherwise we'll just have to pay out of pocket for it.
We signed up to participate in a study the neurologist is doing on headaches in cardiac kids. He said we probably won't really see a benefit from this study, but hopefully it will help kids in the future. I mentioned that his headaches have improved over the summer. I was pretty happy about that fact. He let me know that it's very common for the kids to have less headaches in the summer. He said to expect it to really increase when school resumes. :(
Neurology called a few days ago wanting to start him on a prophylactic medication for the headaches. I have pretty mixed feelings about this. Apparently the negative side effects to this new medication is sleepiness and increased appetite leading to weight gain. Hmm...those actually sound pretty awesome for Ethan! But the thought of starting him on yet ANOTHER medication is such a struggle. He's currently taking 11 medications each day (6 of those are taken 2-3 times per day). Granted he's really great at taking meds, but I don't want to just keep adding drug after drug to him. I told them to hold off and wait until I talk to cardiology about it. They said to call any time and they will send the order for the meds right into the pharmacy. I spoke to cardiology about it and they're looking into it. They also want to double-check and make sure everything will be safe with all the other drugs he takes. I brought up the fact that we were hoping the stent in Ethan's narrowed SVC would help alleviate the headaches. Dr. Z (main cardiologist) doesn't think it will, but Dr. G (the cath doc) thought it would. I guess we'll see.
That brings us to cardiology. We have our next appointment September 11th. We'll have an echo and meeting with both Dr. Z and Dr. G to discuss the next step. I think it'll be placing the SVC stent since that's what was supposed to happen this past spring. I won't know for sure until the appointment though.
Please keep us in your prayers as things start getting even busier in the next couple of weeks. Callie's soccer season is about to start and that should be interesting to say the least. Her team was bumped up to the U12 league because not enough teams signed up for U10. She is on a REALLY young team and just lost 3 of the main offense players from last year. As replacements, we got 3 9-year-olds and an 11-year-old who has never played soccer before! Wow. Definitely going to be a rough season! I just can't picture tiny little Callie in the goal box against 12-year-olds! Eek! Well, we better get practicing!!!
I'll keep you all posted with our upcoming school start, sleep clinic/neurology next week, and cardiology news. Thanks for the prayers everyone!
First off, we got a pool! We've been really enjoying this, even though the weather has NOT been cooperating! I think we've had about one day of warmth and sunshine since we put it up! Oh well, at least it's heated. And maybe we'll get a few more days of good weather before school starts up!
Callie, Ethan, and I also had our birthdays this month! I can't believe Callie turned 10 and Ethan is now 6! They're just growing up so quickly! We were able to have family over to celebrate the kids' birthdays and we had a great time. :)
The kids also enjoyed their traditional birthday breakfasts. The night before their birthday they request the morning's meal. Then we just stick a candle in their breakfast and sing to them to start off the day right. :)
And another thing we did for birthday time was add to the family! Welcome to Fiona! She's our sweet little puppy - half English Bulldog and half Puggle. We all just love her and are so happy she's with us!
We also are in full gear getting ready for school to start up! I just can't believe Callie's going into 5th grade and Ethan's starting kindergarten! These will be such big years for them! We just got Callie's schedule and of course she got the teacher we were warned to avoid. Figures. She only has her for homeroom, science, and a language arts. The rest of her classes are switched around to various teachers, so hopefully she can just power through and make the best of the situation. I just pray that she does well and has a great year no matter who she gets! She has always done great at school and teachers love her. Hopefully that'll really help her with this year!
I've been trying to contact Ethan's school to update his IEP plan, create his 504 plan, and go over some regulations from the doctors. Unfortunately I can't seem to get in touch with anyone! I'm apparently going to have to really start hounding them a couple times a day starting Monday, because we have to get these things figured out before school starts!
Ethan also had some medical appointments recently. We went to the pulmonologist and got great news! He agreed with the pediatrician and said Ethan's lungs have never sounded this good! I'm so happy about this! We went over some of the lung scans again during the appointment. He mentioned that the atelectasis and bronchiectasis is actually in both the right and left lower lobes. We had thought previously it was just his left lower lobe. He brought up the lobectomy once again (surgically removing the lower lobes), but once again agreed that this would not really be safe due to all of his past surgeries, lung disease, and potential detriment to his body. I don't know why he keeps bringing that option up, but I really don't see us ever going down that road. He did mention about heart transplant though. He said he's working on ensuring the meds and treatments we're doing will help keep his lungs healthy enough to help make any future heart transplant successful. I asked him what he thought about his lungs accepting a new heart. He said (and I'm not sure he's really the one to know this instead of the transplant committee) that he might not need a full heart/lung transplant in the end. These lungs might actually be able to handle a new heart! I think it's way too early to tell just yet, and I also think that's mainly going to be the decision of the transplant team. But of course it's always nice to hear a positive outlook. :)
We went to the Pediatric Sleep Disorder Clinic for Ethan's sleep struggles. The appointment went really well and I'm so happy with how things are going. They diagnosed Ethan with Delayed Sleep Phase Syndrome. This basically means that his internal body clock was really delayed and we have a lot of work to get him back into the right schedule. They sent us home with a bunch of schedules to follow, charts to fill out, and an order to start taking Melatonin. The schedule is strict, but it's going so well! We're already down to tonight's bedtime of 9:45! The goal is to have Ethan fall asleep at 9pm and wake up at 7am - all while sleeping through the night. I pray that this happens, and I'm so relieved that it's going well so far. He's only had about three nights where he's woken up in the middle of the night or struggled falling asleep. :)
We also saw neurology as a follow up to the ADHD appointment and his headaches. They did another assessment with Ethan and think he'll benefit from more therapy. They wrote up an order for him to start back with occupational therapy and additional speech therapy. Insurance denied the therapies, so now I am trying to change his insurance. Otherwise we'll just have to pay out of pocket for it.
We signed up to participate in a study the neurologist is doing on headaches in cardiac kids. He said we probably won't really see a benefit from this study, but hopefully it will help kids in the future. I mentioned that his headaches have improved over the summer. I was pretty happy about that fact. He let me know that it's very common for the kids to have less headaches in the summer. He said to expect it to really increase when school resumes. :(
Neurology called a few days ago wanting to start him on a prophylactic medication for the headaches. I have pretty mixed feelings about this. Apparently the negative side effects to this new medication is sleepiness and increased appetite leading to weight gain. Hmm...those actually sound pretty awesome for Ethan! But the thought of starting him on yet ANOTHER medication is such a struggle. He's currently taking 11 medications each day (6 of those are taken 2-3 times per day). Granted he's really great at taking meds, but I don't want to just keep adding drug after drug to him. I told them to hold off and wait until I talk to cardiology about it. They said to call any time and they will send the order for the meds right into the pharmacy. I spoke to cardiology about it and they're looking into it. They also want to double-check and make sure everything will be safe with all the other drugs he takes. I brought up the fact that we were hoping the stent in Ethan's narrowed SVC would help alleviate the headaches. Dr. Z (main cardiologist) doesn't think it will, but Dr. G (the cath doc) thought it would. I guess we'll see.
That brings us to cardiology. We have our next appointment September 11th. We'll have an echo and meeting with both Dr. Z and Dr. G to discuss the next step. I think it'll be placing the SVC stent since that's what was supposed to happen this past spring. I won't know for sure until the appointment though.
Please keep us in your prayers as things start getting even busier in the next couple of weeks. Callie's soccer season is about to start and that should be interesting to say the least. Her team was bumped up to the U12 league because not enough teams signed up for U10. She is on a REALLY young team and just lost 3 of the main offense players from last year. As replacements, we got 3 9-year-olds and an 11-year-old who has never played soccer before! Wow. Definitely going to be a rough season! I just can't picture tiny little Callie in the goal box against 12-year-olds! Eek! Well, we better get practicing!!!
I'll keep you all posted with our upcoming school start, sleep clinic/neurology next week, and cardiology news. Thanks for the prayers everyone!
Wednesday, July 17, 2013
Next update!
Here's the next random catch-up from summer. :)
First off, my cousin Brandon got married this summer! We are so happy for him and his wonderful new wife! The wedding was so much fun and everyone had a blast! We are keeping the newlyweds in our prayers as they start off their life together and deal with all the struggles and separations from him serving our country in the Marines.
My pictures from the wedding are horrible, but it's the best my phone would do.
We've also spent time cooling off from this heat at the lake and some local shooting fountains!
Yesterday we had Ethan's pneumonia recheck with the pediatrician. I went in hoping for good news but bracing for more of the same. The past two rechecks showed no improvement in his lungs. Yesterday, the doctor listened to his lungs and said she's never heard them this clear! There wasn't a single crackle and his left lung seemed open! I was so thrilled I could've cried! We picked up his x-ray results from radiology after the appointment and headed out to celebrate!
Ethan's cardiologist wants us to schedule his next appointment for early August. That way both of the cardiologists can meet with us and figure out the next step. I'll call tomorrow and schedule that appointment.
We also discussed Ethan's lack of sleep. We've been struggling with sleep his entire life, but this past year has gotten pretty out of control. I put him to bed around 9pm. We go through the whole bedtime routine (book, song, prayers, kisses). Unfortunately he doesn't actually fall asleep until somewhere between 2 and 4 in the morning. Usually that's after coming downstairs with excuse after excuse and being put back to bed multiple times. Then he'll finally break me around 3 in the morning and sleep on the floor of my room. It's not AS bad in the summer since he doesn't have to wake up at the crack of dawn, but I still get him up between 8:30-9am to try and tire him out for the next night. It never works, but I have to at least try. I just know this can't continue when school starts back up. He certainly can't make it through a day of school after only having had 3-4 hours of sleep!
Either way, we got a referral for a sleep specialist. This is at the neurology office he goes to for his ADHD. Hopefully we can be seen soon and get something figured out to help him! I hope to hear back from neurology with an appointment date in the next day or two.
Last but not least, today one of our heart friends that we follow online got his new heart! He is the same age as Ethan and just was admitted inpatient waiting for his new heart a month ago. Thankfully a new heart came quickly for him and we pray that his recovery goes extremely well and his body accepts the new heart! Ethan watched the video of him getting the news that his new heart was on the way. I explained to Ethan that this new heart would make Owen (our heart friend) feel better. Ethan then asked me "When can I get a new heart? I'm tired of being sick too." He broke my heart with that comment, but hopefully we can figure out a way to make him really start feeling good.
Please continue to keep us in your prayers. I'll keep you updated with our activities and upcoming appointments.
First off, my cousin Brandon got married this summer! We are so happy for him and his wonderful new wife! The wedding was so much fun and everyone had a blast! We are keeping the newlyweds in our prayers as they start off their life together and deal with all the struggles and separations from him serving our country in the Marines.
My pictures from the wedding are horrible, but it's the best my phone would do.
 |
| John, Ethan, and Brandon waiting for the food :) |
 |
| Family picture |
 |
| Brandon and Nicole :) |
 |
| the dance floor - the DJ was amazing, so everybody was out dancing and having fun! |
We've also spent time cooling off from this heat at the lake and some local shooting fountains!
 |
| The kids at the lake |
 |
| Ethan playing in the sand |
 |
| Callie playing in the sand |
 |
| Callie and Ethan at the shooting fountains |
 |
| Ethan still gets his headaches. :( He had one at the park and had to lay down to try and feel better. |
Yesterday we had Ethan's pneumonia recheck with the pediatrician. I went in hoping for good news but bracing for more of the same. The past two rechecks showed no improvement in his lungs. Yesterday, the doctor listened to his lungs and said she's never heard them this clear! There wasn't a single crackle and his left lung seemed open! I was so thrilled I could've cried! We picked up his x-ray results from radiology after the appointment and headed out to celebrate!
 |
| The kids after eating ice cream at Hastee Tastee. We stopped here after eating at Hot Dog Heaven. I used to go to these places all the time when I lived in this city, so now it's such a treat on the occasions we can make it there! |
Ethan's cardiologist wants us to schedule his next appointment for early August. That way both of the cardiologists can meet with us and figure out the next step. I'll call tomorrow and schedule that appointment.
We also discussed Ethan's lack of sleep. We've been struggling with sleep his entire life, but this past year has gotten pretty out of control. I put him to bed around 9pm. We go through the whole bedtime routine (book, song, prayers, kisses). Unfortunately he doesn't actually fall asleep until somewhere between 2 and 4 in the morning. Usually that's after coming downstairs with excuse after excuse and being put back to bed multiple times. Then he'll finally break me around 3 in the morning and sleep on the floor of my room. It's not AS bad in the summer since he doesn't have to wake up at the crack of dawn, but I still get him up between 8:30-9am to try and tire him out for the next night. It never works, but I have to at least try. I just know this can't continue when school starts back up. He certainly can't make it through a day of school after only having had 3-4 hours of sleep!
Either way, we got a referral for a sleep specialist. This is at the neurology office he goes to for his ADHD. Hopefully we can be seen soon and get something figured out to help him! I hope to hear back from neurology with an appointment date in the next day or two.
Last but not least, today one of our heart friends that we follow online got his new heart! He is the same age as Ethan and just was admitted inpatient waiting for his new heart a month ago. Thankfully a new heart came quickly for him and we pray that his recovery goes extremely well and his body accepts the new heart! Ethan watched the video of him getting the news that his new heart was on the way. I explained to Ethan that this new heart would make Owen (our heart friend) feel better. Ethan then asked me "When can I get a new heart? I'm tired of being sick too." He broke my heart with that comment, but hopefully we can figure out a way to make him really start feeling good.
Please continue to keep us in your prayers. I'll keep you updated with our activities and upcoming appointments.
Subscribe to:
Posts (Atom)