Owen continues to look good and has made huge strides this week. He is up to 700ccs (23oz) of Gtube feeds a day and he is tolerating it well. He still wakes up and pukes each morning but he is doing well the rest of the day. Periactin (appetite stimulant) is really helping him overall! The best news of the day is since his weight is up to 59lbs we are turning off TPN and Lipids today!!! I am so thrilled! I am hoping his taste buds return because he says everything tastes "off" lately. I'll continue to push his gtube feeds and thankfully he already drinks more than enough water.
Two days ago we decreased Owen's Milrinone from .4 to .3 and he seems totally fine. The plan is to decrease it to .25 tomorrow and hang out there for a while. It's hard to believe that 11 weeks ago we were barely getting by with Epi and Dopamine drip.
Owen's labs looks amazing again this morning. His WBC is still low and his ANC is at .67. He is still being treated with monotherapy for his antirejection therapies. His EKG looks good with no arrhythmias as well. We found a sweet spot with 4x a day Lasix and once daily Diuril for diuretics. So many answered prayers and Owen sends everyone a big thumbs up! He is feeling pretty great!
Major thumbs down for continued Isolation. That darn Pseudomonas, he had months ago, has us locked down for life. Owen can do his walks but no going to school still. If anyone that reads this does homeschool curriculum and has suggestions for 3rd graders (great reader, writing comprehension and math problem solver, struggles with phonetics/spelling) please reach out! As of now, he will have the hospital teacher come bedside for about 20 min a day. Clearly that is not enough for a 3rd grade student, so I need to come up with a better plan. I'll also reach out to Palo Alto School district about homebound (hospitalbound?). We'll figure it out but suggestions would be great!
We are grateful for the ability to get out of the room for long walks. Last night we went on a late night hunt for Pokémon. Owen has 6 Pikachu already and he is trying to collect enough to evolve it into a Raichu.
Back home... Kam is loving high school this year. She has a challenging schedule and she loves it. Logi has been keeping Auntie Sussy very busy and we appreciate her doing so much for this little munch. Logan is keeping Sam well fed...
Larissa took him to the Dinosaur museum on Tue and he loved it! There was a volcano and he kept saying "hot hot hot." He panned for gold and explored the entire museum. My little adventurer.
Yesterday was open bounce for toddlers at BounceU. He played so hard!! He is a physically beast and just went up and down the slides as fast as he could. No fear. He loved it! This morning he tried a class at Little Gym, which Kam loved, but he is too little to "follow the rules" and just wants to explore. I can't wait until the weather cools off and he can go to the zoo and run outdoors. Thanks Larissa for keeping him so busy.. I wish I was there to do it, but glad he has you!
Life is good. We continue our wait. Owen continues to do so well but the reality is that his coronary arteries disease is severe and it's a progressive disease. There is no cure or reversal but God is working miracles in keeping him stable and guiding his team of docs. We are very aware that the outcome could be much different right now. Feeling blessed.
15 comments:
Andrea my neighbor runs a homeschool Coop if you want I can see if she can send you info
http://www.criticalthinking.com/
This was the core of my homeschooling, along with a steady diet of good books and current events.
Another option could be online schooling. When my sister was in the hospital the state had an online schooling option where she could take classes, complete homework, and video chat with her teacher daily (4th grade). Not sure if California is the same way but I thought that I would throw the idea out there! Praying for Owen!
Check out Ambleside Online and Easy Ready homeschool. Both are basically free and online. AO is "older" feeling, but it had a bunch of great book ideas at the very least. EP is probably a better fit for you, and supposedly there is an amazing Facebook community for it.
Check out Ambleside Online and Easy Ready homeschool. Both are basically free and online. AO is "older" feeling, but it had a bunch of great book ideas at the very least. EP is probably a better fit for you, and supposedly there is an amazing Facebook community for it.
My daughter is currently in the hospital too. Her school has her enrolled as home bound. They gathered all her work for the quarter and sent it to me. I am working through it with her at her pace. She also does face time for her math class every day. The face time fulfills the four hour teaching requirement for home bound students.
I teach third - happy to send some resources/websites your way!
tamarsb (at) gmail.com
All I have to say about Third Grade... is Flashcards, Flashcards and more Flashcards for math! Reading books and book reports and he will be ahead of the game for Fourth Grade. He might enjoy reading a Science book on how things work and doing little art projects along the way.
Give him a hug from me!
I have a third grade homeschooler. Here are some ideas:
Math - teaching textbooks 4. This is computerized and fun (no teaching involved for mom). Rave reviews!
Spelling - all about spelling is great and you can pick the appropriate level without worrying about grade level.
History - the story of the world. Read it aloud or buy the audio book. You don't need to be stressing over testing or projects. Or you could buy "liberty kids" DVD set to watch (animated) and read a few books about American History.
Reading - appropriate readers are enough, but "all about reading" gets great reviews, too.
Writing - buy a composition notebook and write a short daily journal entry. We used a curriculum by royal fireworks press called 'Aesop's fables' last year and loved it...simple but varied writing skills included.
Grammar - we use First Language Lessons. Its easy and mostly read aloud! A lot of people prefer a workbook such as daily grams.
Mostly, give yourself grace and don't try to match up to public school. A little bit everyday will go a long way. You may need computer curriculum, audio books, DVD videos, or more 'outside the box' options since you have a special situation. Those are extremely valid forms of homeschooled education!
You can access a huge list of curriculum with 'best pics' reviews at www.Cathy Duffy reviews.com. very reliable information on this site.
We do time4learming and the boys love it. It's very interactive. It's your own schedule too.
Allinonehomeschool.com. it's free and online. Also knoen as Easy Peasy.
For my 2nd/3rd grader we use The Phonics Road to Spelling and Reading because it integrates their spelling and reading and writing - pretty much ALL of the language arts needs. We also use Math U See. You can go to their web site to do a placement test to see what level he might need. He is getting a great science education already. To do Phonics Road and Math U See takes us a couple of hours tops and we spend the rest of the time reading everything we can get our hands on about anything that interests him.
I'm a teacher who had worked with homeschool families. They swear by the program called "explode the code". If he is struggling with phonics, I recommend this program and would start with book one. Double check that he knows all of his letter sounds as well, that really gets in the way if he doesn't have them internalized. :-)
One thing you could check into is online public school. I know plenty of heart mom's and immunosuppressed kids that choose this to public school when needed. The Allinonehomeschool is also one that I have heard a lot about ass well.
I second Carrie B's recommendation for online public school. We do AZVA (K12) and my son loves it! We started in Kindergarten as a way to avoid the germs post-transplant and he's done so well with it that we decided to continue! Enrollment is super-easy (just prove you are an Arizona resident with your license) and they send you ALL of your books and materials. The lessons are all online, along with pacing guides-and you have teacher to back you up & classes to log into daily of you choose to participate... You could try it and see if it's s good fit. It's free & if you have an IEP they will also do virtual therapy with your child! If you want any more info, emai me! :) tarabinaz@cox.net
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