Doing Great At Home

Here is another long overdue update: Hana is doing great and everyone else is exhausted! Being at home has been GREAT, but it’s been a little rough. First, I’m trying to make sure we get out to do fun things, making up for all the time in the hospital. Second, we are trying to catch up on nine months away from home. Third, I got a nasty cold that wiped me out for almost two weeks! On top of that is all the appointments, trips to the pharmacy, phone calls, syringe washing, drawing up meds, etc. Also, getting Hana to nap and go to bed has been very challenging and time consuming but once she gets to sleep she does well. She seems really happy and energetic.
Hana’s NG tube is still gone! She seems to be eating better although meal time takes a very long time. We spend a lot of time in the kitchen. Eating on the go is not really a great option because we have to keep her hands clean. She did lose a little weight (100 grams) at her last weight check but they didn’t want to do another one for two more weeks so they don’t seem too concerned. She is doing a great job taking all her meds.

Overall, we are having fun and adjusting to life at home. It’s really hard to make much progress on the backlog of things that must get done but I think it will get better in the next month. Plus, my mom is coming out next week so I think that will help too. My sister was out for a week at the tail end of me being sick and she was a huge help but she mostly covered for me so I could get better. Our friend Judy has also been an enormous help, I don’t know what we would do without her. I’m sure I could make it easier on myself by staying home and not trying to get out with Hana but we’ve done enough of that in the hospital! Most of the mess and projects can wait (until they can’t and then you just figure out how to get it done.) but I’ll admit the mayhem does make me a little crazy.

In the next couple of weeks Hana will have a couple clinic appointments and another cath/biopsy. Let’s hope those numbers look good and she starts gaining weight!

On a mostly unrelated note – my detourleft email had a catastrophic problem and I lost all my emails and contacts that I had saved since the year 2000. If you use that email to contact me, please send me your email address again! Also, if you emailed me at that address in August or early September, I probably didn’t get your message. Sorry to have to broadcast that here.

Thank you for all the support!


5 thoughts on “Doing Great At Home

  1. Thanks for the update! She looks great and so glad to hear you are having fun (and have recovered from your cold) WIll look for your update on her cath and appointments.

    The Pucks

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  2. Wow. Hana looks terrific. I love to see those rosy cheeks! It is so rewarding to see her healthy progress towards a wonderful future.

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  3. So happy for you all. She looks so happy and healthy! What a blessing. Take care of yourself and don’t try to do too much-just enjoy having an energetic and happy little girl. You, Paul and Hana all need to savor life after going through all you’ve been through.

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  4. Sorry to hear about you being so sick. Hana looks so vibrant and joyful. And what a sweet photo of her leaning up against her dad’s arm while he is on his laptop

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