Today: T+68

Sorry it has been a little while! I started writing this post, and then my laptop had a falling out with the wifi. However, they are now communicating again so i can continue!!

In the last couple of weeks we have had one brilliant change……we have been allocated a halfway house. Hugo and I are now living at the house. Seth is allowed to be at the house all day, unless he needs medication or a transfusion. However, he must stay at the hospital at night because he still has to have TPN (intravenous nutrition). He is still not eating any food. He is showing interest in food which is an improvement so hopefully as each day passes we will get another day closer to him eating again. He is tolerating milk better now so we are able to increase it 1 ml every other day which means he is getting better nutrition through his gut.


  
In himself Seth is OK. His mood is good, however, it is subdued. When we first got the halfway house, Seth lost a bit of his sparkle. It was a little like it was a bit too much for him. He also found Hugo difficult to fathom. He isnot the peaceful little newborn Seth remembers. He now takes Seth’s toys, and does not understand the rules of sharing. Hugo also demands a lot of attention, he has to be watched. Seth isn’t used to that. He has not had the opportunity to grown with Hugo. So we make a big effort everyday to make sure we spend quality time giving Seth attention alone and with Hugo.


His skin is brilliant at the moment!!! The GVHD rash seems under control, we have been able to reduce the steroids so he is on 5mg one day and 0mg the next. This is still IV at this time, but will change to oral when we drop next time which will be to 2.5mg one day 0mg the next.

The Adeno virus is back, but only at a low level. The HHV6 is still at the same level. But neither are affecting him. So at the moment we are not very worried about them – they are managed and hopefully as we reduce the suppression his immune system should come up more and be able to deal with the virus’.

So things seem to be going well at the moment. Things are just taking time. We have worries, but they could be worse.

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29 thoughts on “Today: T+68

  1. Lesley says:

    Brilliant!!!! Seth looks amazing in these photos….. He looks like he’s having fun and great to see him spending time playing with his brother. Let the sibling rivalry begin lol!!!! Love these photos… They always make me smile 💛💛😘xxx

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  2. Mitchy (Michelle) Leinen says:

    I’m sure it is a whole new world for our little guy. And for the most part, he has had your undivided attention whenever he is with you because Hugo couldn’t be around. It will all take him getting used to having a “normal” life. He looks amazing and I said before, it is amazing to me how tall he is getting. Thank you for the updates and photos. They always make my day!!! (anyway when they are this good!) I found the most adorable Minion towel that has a hood for bath time. Do him or Hugo have these? And one last question. How is your puppy? Hugs and Love from South Dakota, USA!

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  3. Meg McCrae Craig says:

    So happy to see Seth happy in those lovely photos. I pray that things will get better and easier with every day that passes. Love to you all. xxx❤️🌟😄

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  4. Michele says:

    So good to see he is not the same little boy we all wore yellow for that day he looks so good Seth keep getting better the world loves you little man

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  5. Leona Desroches says:

    So happy this little man is doing so much better!! I love seeing that smile, it’s so big and bright 😊 And his skin, wow, what a difference from those previous pictures where it looked like a burn, I just end wanted to cry. Hopefully soon he’ll get to go home!!! 💛💛💛

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  6. Amanda says:

    I have been following your story for a while and I love receiving and reading the updates to sweet Seth. Your story is so incredible and Seth looks and sounds like an amazing young boy. The pictures brighten my day and I look forward to seeing Seth smile as much as I can. He truly is a joy and I don’t even know him, yet I feel like I do. Seth reminds me so much of my little brother Colby who had a real struggle with cancer and pulmonary fibrosis since the age of 2. He passed away 3 years ago at the age of 6. Seth reminds of me of the pure joy, strength, love and happiness my brother had throughout the struggles. I live my life now to give back to children and do anything that I can. I would love to meet Seth one day and be able to bring him some new toys. We also share the same favorite color of yellow! I am sincerely interested in the opportunity to meet your family and your little boy. I’d love to hear back from you, as I know I am a complete stranger. I thank you for sharing your story and your sweet boy with the world. He is an inspiration to so many, as are you for your strength. ❤ God bless.

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  7. angelkhandra says:

    Oh, Seth! You are one incredible little boy! BIG boy! I know it must be hard not to have mummy and daddy all to yourself anymore, but think! You get to be a big brother! I know you and Hugo will need a little time to get used to each other again, but I know you will be a brilliant big brother! You can teach him how to be a superhero! I’m so happy to be able to see your sunshiny smile in the photos your mummy posts. And I’m so glad your family has shared you with the world. What a gift that has been to us! I hope things keep going well and you have fun playing! The world loves you, Sweetie!

    Oh, yes! And Kimo says “Hi!”

    Love, from Kari and Kimo the dog in Minnesota 💛💛💛

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  8. Stacy says:

    Love seeing the smile on his face playing with Hugo and his Dad. I am sure it is an adjustment but it must fill your heart with love to all be in one house. Be well, and all my positive vibes to the entire family!

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  9. Missy Washburn says:

    Your news and pictures are wonderful! I am so happy to read your update and thank you for taking time to share. I can imagine you are all going through some “growing pains” during this new transition. But it sounds like you have a solid plan on spending alone time with your sweet boys and creating a new balance for your family. I find you all just amazing and seeing Seth vacuuming and helping in the kitchen is awesome! Continued hugs, support and prayers from Memphis, Tennessee👍

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  10. Sue says:

    So nice to hear that you have enjoyed more family time. You all keep each other going in different ways. The photos clearly show how precious your family is and how you are there for each other. Seth looks wonderful. He is absolutely an awesome little boy, sweet as can be but at the same time tougher than imaginable. Seth and Hugo are both adorable. Hang in there. Looking forward to more good news. Sending love.

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  11. AiraM says:

    Im so happy that he is doing so well. Those smiles. They’re beautiful. I will pray that he continuously gets better. He’s a hero and also his parents. God bless your family.

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  12. Alexandra says:

    Sending you prayers from Panama little angel! I LOVE YOUR SMILE! I wish I could go all the way were you are and just give you the biggest hug ever!!! Stay strong baby!

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  13. Lesley says:

    Sitting watching Great Ormond Street – it’s about the bone marrow transplant….. Immediately think of wee Seth – amazes me what doctors can do… 💛💛

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