Cardiology and catching up

Well...just to spread the word, Callie is participating in Hoops for Heart again this year! The past three years she was top fundraiser of her school - all thanks to you! We have been able to raise a lot of money each year for the American Heart Association! :) We're asking again for donations. If you'd like to donate money for Hoops for Heart we would be so appreciative! We're kind of behind due to Callie's trip last week (more on that in the next post), so we're trying to get money collected this week if possible. Please let me know if you are able to donate -- and ANY amount helps! You can send me an email at jkbradley44@gmail.com, and I'll send you my address to mail a check or cash. This is going to a great cause - obviously raising funds to find cures for heart disease is VERY near and dear to our hearts! :) Thank you!

Also...girl scout cookies have arrived! If you ordered some cookies, expect them soon! :) And thank you so much for all the cookie orders!

Okay, so we had a cardiology appointment yesterday. This was just a pre-cath appointment to make sure Ethan is looking good and ready for the cath. His EKG was good and we didn't even do an echo. :) Ethan was happy about that! We went over the plans with Dr. G (cath doc) for Monday. He's going to insert a covered stent (very similar to the one that was placed last time). This one will go in his left pulmonary artery though - this is the one that continually clots off. We hope that by putting in this covered stent it will stop the closing off of the artery! That would be amazing! The concern with this is we don't know how the ends of the stent will react. His cells have been growing through the open stents that are there, which is why they keep clotting off. This covered stent will stop the cells from being able to grow through the stent and clot, but the ends are a concern. The doctor doesn't know if his cells will wrap around the ends and clot off on the sides instead of in the middle. I asked what we do if that happens, and his response was "That's a good question." Then silence. Well, apparently he's not too sure what to do in that case yet either. Please just keep Ethan in your prayers that his body accepts this without a problem and doesn't have any growth around the edges!

Ethan did so well for his EKG! :)

Daddy and Ethan playing on the computer waiting for the doctor

Dr. G once again reminded us of the fact that surgery is approaching. He said we have exhausted all options for working on his conduit - especially since last time was so dangerous and it cracked. He said we're not even going to touch it again. The next step is the open heart surgery to replace it with a new larger one. We've been expecting this (that was actually supposed to happen back in June and then again in September), so it's just something to know is coming.
Please keep us in your thoughts and prayers for a very smooth and successful cath on Monday! I will keep you all posted as the day progresses - and even more so on Facebook if you follow me there.

Other than that, things have been going well. Ethan has been feeling well thankfully and did not end up getting the sickness that went through our house last week. I had some nasty stomach bug for 2 days, a sinus infection, and lots of congestion and headaches. I'm still not back to 100%, but I'm doing SO much better than last week thankfully!

Ethan finally got his new glasses! He loves them, so that's a relief!

Mid-blink :)

We took a trip to Chuck-e-Cheese before Callie's trip. Here are some pictures of that!

*Note the small child on the games in the background. This kid was climbing on EVERYTHING without any parent in sight! John helped him get off countless games all while his mom ate pizza and chatted in a booth with her friend. Grrr!

The kids all had a dance party and ticket grab :)

Callie shooting baskets

My dad's birthday was this past weekend, so we had a little ice cream cake to celebrate. Ethan had to help Grandpa blow out his candles though!

Also we had a little family bowling night. We met up with my dad for a Chinese buffet, then headed over for bowling - and met up with my cousin who was playing there in a league that night. :) We had a lot of fun!

Ethan is not the most focused bowler. :) Here's a video showing a bit of how his evening went. LOL After rolling it towards me, he managed to bowl in the wrong lane!


<iframe width="420" height="315" src="http://www.youtube.com/embed/hnRGd1mcbCk" frameborder="0" allowfullscreen></iframe>

Thank you everyone for all your thoughts, prayers, and support! It means so much to us! I will keep you all posted with the cath updates. I will also be posting up about Callie's trip last week - but that might be broken up into a daily log... Still working on it :)

CHD Awareness and busy busy busy!

I can't believe how long it's been since I last updated! We've been running around super busy lately, so I am sorry I never got back to everyone with the cardiology plans. Here's a bit of what we've been up to lately.

Cardiology:
Our cardiologists all discussed the ideas for surgery versus cath. They decided that we should do one last cath attempt before the open heart surgery again. What we'll do is place a covered stent (just like the last cath) and scope out each of the other collateral arteries. If any of the other stents need ballooning then we'll take care of those at that time. I do have concerns obviously since placing the last covered stent was so traumatic to Ethan's body - his bleeding issues were so difficult to stop since the catheter is so much bigger to use for this type of stent. We'll be discussing all the specifics at our pre-op appointment on Feb 28th. Please just keep Ethan in your prayers for a very smooth and easy cath - with no bleeding issues this time! The cath is scheduled for Monday, March 4th.

Pulmonology:
We've been dealing with a nasty cough that just wouldn't go away for a couple months this winter. With breathing treatments and time Ethan is starting to do so much better! I'm so relieved that his lungs seem to be clearing up so well - especially with this cath coming up so soon! Hopefully he'll continue to stay clear!

School:
We're still working on this. Ethan loves going to school this year - thankfully that's much better than last year. But he still doesn't seem to care about actually "learning". He just wants to go to play with his friends, the toys, and do art projects. His teachers comment that they're still having to work with him on his concentration and focus on schoolwork. He just seems to struggle so much in paying attention to schoolwork! He does still do much better when doing work on an iPad or computer as opposed to a worksheet or flashcards. He's also excellent at doing work like building letters out of blocks, solving puzzles, and hands-on things like that - even if they involve the same things that a worksheet would be showing. Oh well, hopefully he'll improve with his attention and ability to focus on things on paper soon. I have a feeling kindergarten is going to be rough for him next year...

Callie:
Callie's been keeping VERY busy lately! She's been busy having fun with her Girl Scout troop. One activity we did was attend a K9 unit show at our local library. The girls loved it and had a great time!

Callie's in the pink all the way to the left

She's also finishing up her basketball season and doing so well! She has improved so much this year, and actually starting scoring baskets, stealing balls, and becoming quite aggressive on the court! :)

She also was invited to help her friend's indoor soccer team play some games this season. She played last weekend and this weekend (doubleheaders each Sunday). Indoor soccer is a totally different game than she's used to with her outdoor team, but she seems to really like it. She's going to participate in an indoor soccer training program starting in two weeks. That will also improve her outdoor game I'm sure, but I think she's wanting to sign up for winter soccer with her friend too. *sigh*

In addition to all this, she auditioned for the children's Honors Choir. The kids had to individually audition in front of the music teachers, and the top 7 students from each school in the county were selected for this choir. We are so proud of her that she was selected and will perform at our Community College in March!

Softball and spring soccer seasons are fast approaching, so things don't look like they'll be slowing down soon. Oh well, at least there's not much time for boredom!

CHD Awareness:
Onto the big week! Ethan is one of the Cleveland Clinic Children's Hospital (our hospital) Littlest Heroes for the week! He was able to have a photo session at the hospital and they used one of the pictures to make a poster and explanation of his heart journey! It is so exciting! :) Here is a picture of the poster they made.

Here are some of the other pictures that were taken - these are just some of my favorites from the shoot.

 

 

Here's a picture of Ethan showing off his muscles and scars to promote CHD awareness!

And once again I haven't made a new video. One of these years I need to start much earlier than February! Here's the video that I made when Ethan was 1 all about his first year's journey with heart defects. I guess it'll just have to do. :) Just click this link below to watch the video - and there is music so make sure your volume is on.

http://www.onetruemedia.com/shared?p=7f65c3ff418f1ce42ccd29&skin_id=601&utm_source=otm&utm_medium=text_url


That's about all I'll update on for now! I will have a Callie post coming up later this week about Callie's big trip! Please continue to keep Ethan and our family in your prayers!

Ethan's Journey at OneTrueMedia.com

Make a video - it's fun, easy and free!
www.onetruemedia.com

pulmonology and cardiology

Well, I need to do an update on our wonderful Christmas...but first I'll take this chance to update on our appointments and stuff from this past week. I'll get around to Christmas updates soon though! :)

Monday:
Monday we had Ethan's physical therapy. We brought along his oxygen tank since we've really been struggling with his oxygen saturations these past couple weeks. During his physical therapy from the Thursday before he kept dropping into the 30s after each activity. We didn't get much work accomplished since we kept having to stop and rest so much! Needless to say, once I brought the tank along we didn't even need it! His sats didn't go out of the 50s throughout his session so that was much better than he's been! He was able to do his exercises and had a lot of fun - they even let him jump on the trampoline!

We received a call yesterday from his oxygen supplier and they need to do their annual assessment to make sure he still needs oxygen. I don't think we'll have a problem keeping his at home supply since he never makes it out of the 60s for his sats! They'll check his numbers at rest and doing various activities though just to see if he still qualifies. That'll happen later this month.

Tuesday:
Tuesday we headed downtown to see pulmonology. I requested right off the bat that Ethan doesn't get the Albuterol. The past three appointments he has taken this medicine during his spirometry testing. With this med he gets SO out of control, naughty, and hyper. We had to discontinue it at home a long time ago and switch to Xopenex with a much calmer boy. His levels looked pretty good - basically the same as last time. The doctor was really expecting better though. He figured Ethan's lungs would be clear by now, but he's still really junky and wheezing constantly. The only good thing is there are no crackles being heard in his lungs anymore!

We went over the doc's desire to have Ethan take some antibiotics to try and clear out his lungs, but upon looking all of them up they all interact somehow with one or more of his medications. It wasn't worth the risk to mess with his other drugs, so we'll just continue to do the Xopenex treatments, HyperSal, and vest treatments. He also tried to figure out some preventative measures as well. Dr. Royce (pulmonologist) mentioned that normally in a case with chronic bronchiectesis (SP) like Ethan has, they would remove the damaged lung lobe. This would be his right lower lobe that is almost chronically collapsed. However, he also said that in Ethan's case we'll not be able to do this after all. Since Ethan's lungs are so damaged, the remaining lung sections wouldn't be able to compensate for the missing lobe like a healthy child. He needs as much lung as possible, even if it is damaged. We return in 3 months to see if any progress has been made. The doc also requested that we get a culture from his lungs during his next heart cath. They'll run this culture to see if there's any pneumonia or problem that we're not catching right now.

Thursday:
Thursday we had cardiology. The echo looked decent. We weren't able to see for sure if his collateral artery (the one that kept clotting) is open or clotting again. Dr. Zahka (cardiologist) discussed with me our feelings that this past cath didn't help Ethan out. We now have to figure out the next step since obviously something needs to happen to improve his sats and make him feel a bit better. He is discussing Friday morning options with Dr. Golden (our cath doc). They will also meet with the entire surgical/cardiology committee to discuss his case. They have four options right now on the table. One is fixing his lungs (don't know how to do this though). Two is doing something with his pulmonary veins. Three is the open heart surgery to upsize his conduit (this is the one that we planned on doing in the summer but cancelled at the last minute). Fourth is another cath to open stents and place another covered stent in his last pulmonary collateral artery.

Dr. Z thinks it'll probably be the surgery that we planned for last summer, but we don't know for sure yet. The entire team has to meet so no one is able to change the plans last minute again. They need a unanimous decision for this to happen, so hopefully they can come up with something great and all agree on it! Maybe some new brilliant idea will come out in the meeting as well?! He said we'll know the answer and plans by next Friday. That'll give them enough time to meet and discuss everything.

Thursday was also John's 33rd birthday! We were able to celebrate with Hibachi dinner and a homemade german chocolate cake. We also went through 25 german chocolate cupcakes in 2 days! That man sure loves the stuff! :)

Happy birthday, John!!

 

Ethan was really excited about his Hibachi!

John, his brothers, and Callie waiting for our dinner :)

 

 

Please continue to keep us in your prayers - and please pray that the docs come up with a great plan for our next step. I will let you all know once they tell me what we're doing - it should be next week.

catching up

Things are going well. I know it's been a little while since my last post. Here's basically what we've been up to lately.

Ethan has his wet cough again. It's been back for about a month and a half, but it seems to be getting worse this past week. :( His sats are still basically where he is normally - that's in the 60s when resting and dropping to the 40s or 50s when moving. He is still able to pop back up to the 60s once he rests though, so the lower numbers aren't TOO terribly concerning.

Last Thursday (a week ago) Callie had her first basketball practice of the season. About 15 minutes before practice began Ethan started complaining about a stomach ache. He was perfectly fine all day before that, so we packed up and went to practice anyway. After about 5 minutes there he started with his shivering lip, shaking all over, and ended up spiking a super high fever (almost 104 F)! I left Callie at practice and rushed Ethan home. Once we walked in the door he raced to the bathroom and started vomiting. He puked everything up for about 2 hours! Oh he was so miserable! His sats were in the 40s then so he went back on oxygen for the night. He really doesn't handle being sick well at all with his oxygen sats. He was finally able to keep some Tylenol down and thankfully that brought down his fever. He fell asleep and slept peacefully all night long. No more fevers! He woke in the morning feeling good, ate a little bit and kept it down, and finally weaned off oxygen around lunchtime. Thankfully he's been feeling good (well except for the cough/congestion) ever since!

Ethan was miserable  :(

We were able to decorate the house for Christmas! I love having all the decorations out and lights up everywhere. :) The kids had a lot of fun decorating the tree, caroling at a nursing home, and making lots of Christmas treats!

Decorating the tree

Decorating cheesecake squares

All finished!

Moose wanted some snacks too!

We also took a trip downtown to see all the Christmas lights, the decorations at the Horseshoe Casino, and looking at the "Christmas Story" house. On our trip we made a pit stop to see the river at night, walk around a little by the docks, and stopped to take a picture by a train crossing sign for Ethan. He was too nervous to stand by himself by the sign, but he happily went for it with Callie and me.

Terrible picture, but he was excited :)

We're doing the whole "on again off again" thing with physical therapy. Callie had her initial 8 weeks approved by insurance. Then for re-approval we ended up waiting a full month of fighting to get insurance to accept it. They said they'll provide 4 more visits then attempt again. *sigh* Ethan finished his initial round as well (5 I think) and now we've been waiting 2.5 weeks so far to get his insurance to approve more. Who knows when that will be, but hopefully it's soon! I know they start losing out on a lot of the benefits of the therapy during this time off, so it's so frustrating! The therapists are all still amazed at how tight Callie's muscles are. They've been working on stretches, spine alignments, pulling techniques, and muscle building but she still has major back muscle spasms (thankfully not terribly painful for her) and the tightness is crazy. Hopefully insurance will get on track and we can keep trying to make improvements with the kids!

Ethan also had an eye doctor appointment this past week. His vision has apparently gotten worse so a new prescription for glasses was written up. We're planning on ordering those (along with the rest of the family) this next week. Maybe this will help out in his paying attention in school and improving his school work. :)

We also had a little malfunction with my car recently. The kids and I were on our way to therapy when a weird noise starting happening and smoke started coming out of the hood. Needless to say we ended up calling a tow truck. Ethan was thrilled! Thankfully it seems to be just an issue with the emissions (maybe a clogged catalytic converter) so the car is working.

He was so excited to watch the tow truck!

Ethan had his last ever preschool Christmas concert! This year he did so great and actually participated up on stage! He was so excited all week looking forward to this!

Ethan's in the front row with the white shirt on. This was during one of the first songs with bells to jingle :)

This video is one of the songs they sang. It's the only one I could upload since they're all on my phone and too big to get off. :( Brilliant me brought the nice camera and even extra batteries so I didn't miss anything. Apparently making sure the memory card would've been a great idea before leaving the house. GRRR!

By the end of the songs though he was getting pretty winded. The second to last song involved some spinning in circles and jumping up and down. He made it through the first round of the song, but by the second round he was coughing and had to stop and rest. He just leaned back against the stage and let the rest of the kids finish up the song. The last song he was still resting for so he mainly observed again. He started singing at the last verse when I think he caught his breath enough. After the songs the kids were released to their parents, so he came to sit with me and rest some more. He was very blue at that point, but after a little sitting and some snacks he was feeling better. :)

snack time

Last but not least, we finally took our family Christmas pictures! Now I have a VERY impatient family when it comes to pictures. Callie and I will sit and do pictures for as long as it takes to get a good one. The boys in the family want "one and done", without even caring what it looks like! This year I was able to get three pictures before everyone quit...so even though it's not perfect at least we got something! The kids also posed for a picture. Here's a preview of how that went...

And yes, Ethan wasn't pleased with the fact we didn't have a train to set up around the tree.
He fixed that by setting up his own track around it :)



LOL - Callie wanted nothing to do with Ethan kisses!



 

We have had a great holiday season so far, and we plan to continue with a lot of fun Christmas activities in the next few weeks! Please continue to keep us in your prayers that we all stay healthy (we're all fighting congestion and Callie has been complaining of a sore throat the past 3 days). I plan on taking her to the Minute Clinic today after school. *sigh* But please keep us in your prayers that we can get healthy and stay home (no hospitals!) this Christmas season! Last Christmas Day was spent with me getting IVs in the ER due to my stomach flu and Ethan getting checked out for swelling in his chest that same day. Not a great Christmas with Callie being the only one not sick! We pray that this year will make up for that! ;) We hope and pray that you all have an amazing Christmas as well - and I'll post again if there's anything exciting before Christmas!

 

 



Falltime and audiology

It's been a while since I've posted, so here's a little update of what we've been up to.

Ethan was very into Halloween this year - at least leading up to the actual trick-or-treating! He was so excited to be a "heart doctor" this year! Halloween was delayed a few days for us due to Hurricane Sandy. We had it the Sunday after Halloween - and still ran into some houses without power! The weather was SO cold though that Ethan only made it through one street before quitting and passing out candy instead! Callie had her eye on the prize though and lasted the entire evening LOL! She got more than enough candy for everyone to share!

 

We were able to go to Boo at the Zoo with our heart support group - Mended Little Hearts! We had a lot of fun and the weather actually held up that night! There were a lot of activities for the kids to enjoy and we all had a great time. :)

Every year his preschool does a Halloween parade and trick-or-treating through the halls. The kids all love it and the parents are able to come and watch! Ethan had so much fun dressing up with all his friends, eating donuts, and showing me his classroom. :)

He showed me some drawings each kid in class made. They were supposed to draw something that described them. Most kids drew things like "my favorite food is strawberries", "I love to play with trucks", or "I have a dog". Ethan's picture is in the top left. It's "My hospital bed". :/ I didn't even know what to say when he showed me that! It was sad to see that that's what he thinks when he is trying to describe himself, but he seemed pleased with his picture so maybe it wasn't altogether a bad thing?! *sigh*

Ethan also brought home his school picture! He was so proud of it :) He walked in the door saying "Mommy's going to be SO excited!" Lol

 

We've also been able to enjoy lots of time outside playing in the leaves and enjoying the weather - well before this last storm that is! He loved the leaf pile this year!

We've also been busy finishing up Callie's fall soccer league. Her team had a pretty rough season this year after we lost our top three scorers from the past few seasons. Definitely an adjustment year! Callie played a lot more offense this year than strictly goalie, so she enjoyed having another aspect of the game. I think she likes offense even more than goalie! Thankfully with the terrible weather by the end of the season they moved her tournament indoors! YAY! The kids did well and had fun. I know she's already looking forward to next season - but of course we have basketball starting up in 2 weeks first!

Callie's in blue in the middle of the field. Terrible picture, but I've been really bad about taking pictures this season!

Ethan's therapy has been going well and he seems to enjoy it. We do have to take a ton of breaks throughout his session because his oxygen levels keep dropping. We are trying to keep it in the 60s, but with each activity he drops to the 50s or 40s. Then we have to take a break, lay down and rest, and wait for his numbers to go back up. He still prefers the stop and rest over just wearing his oxygen for therapy though.

Speech is also going well at school. Speech day is his favorite day of the week! He loves going and doing the activities with his teacher (probably because they use the iPads). He even loves doing his speech homework! :) Hopefully he continues to improve in that area! The regular days of school are another issue though. Usually he's pretty good, but still would rather stay home and play instead of actually going to school. Today I got a call from his teacher after school talking about how he's not wanting to participate and doesn't feel the need to listen to his teachers. Lovely. When the teacher told Ethan that she's writing a note home to me about how he was behaving badly today, he replied "Oh I don't care." She was shocked since he usually goes with the flow at school. :( Needless to say we had a nice talk when he got home. He's in the mindset that all his life needs to be about is playing with his toys and drawing his pictures. He doesn't feel he should be bothered doing things he doesn't want to do if he doesn't feel like it. Well, that's not the way life works. He also knows that we have a conference after school tomorrow, so he had better be on his best behavior tomorrow! Here's his form sent home today - usually he's circled "happy" or "tired". This is his first ever (and hopefully last ever) "mad". I've never had to dread conferences with Callie before. These two kids are SO different from each other! Callie's conferences go like "Oh she has no problems." "I wish I had a whole class of Callies." "She's such a good girl and always does great work" yada yada yada. Not quite the ones I get with Ethan though... That better change! *sigh*

 

We are still working on maintaining his lower INR (thinness of his blood). Right now we are testing weekly - and unfortunately still having to do a full lab draw. We ran out of home test strips a few weeks ago. I found a website that allowed me to buy new strips at about half the cost of the pharmacy (they charge $38 per test strip), so that is a huge relief! I ordered his next box but they are taking a while to show up. We have another test due now, so hopefully the strips will come in today or tomorrow before we have to head back to the lab for another full draw. These past two blood tests have been VERY difficult -- needing to do MANY pokes and wiggles around in his arm to get his vein. It's awful for him. :(

We also had his audiology appointment this past week. It went really well! Ethan failed his hearing test at school in the beginning of the year. We were told to get a follow-up check at his audiologist. This check showed his hearing to be fine - same range as our last check there! YAY! That's a big relief! :)

Other than that we have no news. I'm still waiting to hear what's going to happen cardiology-wise. The last I heard from Dr. G was his plan to have another cath in a couple months. That was almost two months ago. I'm probably going to send him an email and see when we're coming back in - but hopefully it can wait until after all the holidays are done! The docs are usually really good about letting us wait until January or February for another procedure. They know we don't want to miss another Thanksgiving or Christmas being stuck in the hospital!

His burns are also slowly getting better. His butt burn doesn't seem to hurt at all anymore, but there is still a dark scar all across. That is getting a bit smaller, so hopefully it'll continue to improve and eventually go away?! I hope so! His head is starting to show a little bit of hair growth again (basically only visible through a dermatology magnifier). We started a steroid cream this week and will check again in a week to see if it's stimulating the hair growth. Hopefully we can get that growing so he doesn't have a big bald patch on the back of his head forever! :)

We are doing well and all getting over some nasty cold/respiratory bug these past couple weeks. Ethan is back to needing his breathing treatments thanks to this lovely bug. :( He's handling it well and hopefully we'll all continue to improve and he can get his lungs all cleared out completely.

I'll let you know when I hear some cardiology news, but otherwise things are going really well. Thanks for all your continued prayers and support!

Pulmonology appt

Last week was Ethan's pulmonology appointment. It went really well! We started off the appointment doing spirometry tests. These showed how well he was breathing, how much air he can get in and out of his lungs, and tests his lung power. Last time he did terribly for these tests. His percentages were REALLY low and wasn't able to complete a single one even on easy settings. This time however...he totally did amazing! His percentages were so much higher (70%-80% as opposed to 30s) and he was able to complete each test successfully! I was so proud!

Ethan did really well until he got his Albuterol treatment. We had stopped doing these and switched to Xopenex because it makes him absolutely crazy! Well they gave him some and sure enough his behavior was TERRIBLE for the rest of the appointment! Grrrr. At least we were able to do all the tests and get a good report from the doctor anyway. His lungs are sounding MUCH better than before! He needs to continue treatments of Xopenex, his salt water solution, and Tobramycin to continue to keep his lungs healthy. His lungs sound great with only a little crackling. This is a huge improvement to where they were just a month ago! :) Even with all this improvement his oxygen saturations are still only in the 60s. He is mostly in the upper 60s since the cath, but we were definitely hoping for better than that.

Other than that things are going really well. Ethan is doing well in school and improving with his speech therapy. His physical therapy is also going well. He met with them last week for the first time and they said he definitely needs it! We'll go once a week along with Callie and hopefully improve with his motor skills. I'm also considering signing up for an additional speech therapy for him. His apraxia is still pretty rough and unless you know him it's still pretty difficult to understand him when he's talking to you. His words get all jumbled up and in the wrong order when he starts talking. Last year in school he received 2 hours of speech whereas this year he's only getting 1/2 hour a week. I'm still just considering this since I'm not sure how much time we have in our schedules, but we'll see. :)

Ethan LOVES getting packages in the mail - but they always end up being either breathing treatments or Lovenox injections LOL. At least he can enjoy the box for them! :)

 

And apparently you're never too old for the kid carts at Giant Eagle :)

 

 

Ethan's INR was up to 3.0 at today's blood test. The doctors just emailed back adn our new goal is 2-2.5. Now we will decrease his dose to 4.5 mg daily and recheck his blood in a week. :)

 

Thank you for all the prayers, cards, and support we've received once again! You all are so amazing! Please continue to pray for us that Ethan continues to heal and improve. Also please throw in a little prayer for me. I had my wisdom tooth pulled today and so far I'm doing well. I just pray that the pain is kept at a minimum and it heals quickly!

 

Also for those who have not received their heart shirts yet, they are coming soon! I'm sorry for the delay!

 

And Ethan will see dermatology soon for his burns. His head seems to have healed up well but I'm not sure if his hair will regrow. Also his butt is slightly improving but is still tender. Please continue to pray that that heals up quickly. Hopefully the wound care/dermatology can get the scarring to be minimal and the pain to go away! I'll keep you all posted!