We’re still here!

September 21st, 2013

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It looks like we’ll be here at least until the middle of next week.

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Tommy’s IV has been discontinued.

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For the time being, he’s being fed solely through the NG tube, which in his case must be accompanied by no-no’s on his arms.  He’s quick and he’s strong.  And remember the miniscule amount of impulse control?

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He continues to undergo nutritional rehabilitation as well as GI testing.

He’s looking so much better than when I brought him in, and that’s good to see.

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We’re beginning to get some answers and form a tentative plan for what we’ll feed him and how we’ll feed him.

We’re being well taken care of.  There is such a pleasant, easy-going atmosphere in this place, and everyone seems to be enjoying their work.

The staff who have worked with us here are phenomenal.  They are amiable and courteous without exception, ask excellent questions and listen attentively, are eager to understand the big picture of Tommy’s situation, and cheerfully make sure every need we have is taken care of to the best of their respective abilities.

Some have offered to hold Ben when that’s helpful for me.  Some have threatened to take him home with them.  <grin>

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I’m also learning a lot about Tommy during this time.

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From carefully observing his reactions to the various activities and interactions he’s had this week, it’s clear that he’s more emotionally fragile than he might outwardly seem.

Sometimes when he appears to be happy, he’s simply coping with stress or giving an inappropriate emotional response to pain.

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Not surprisingly, he regressed a bit this week.

It was hard to see him chewing on his tongue and grinding his teeth on the most challenging days.  Trying to cope–to soothe himself–the best he learned how during empty hours and days and months and years.

If zero is completely calm and ten is uncontrollably overstimulated, Tommy needs many techniques to help him back down to zero, as he hits ten fast and frequently.

I’m experimenting with some simple strategies…

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…to help him come back down to the calm place where therapy and other types of learning are most successful.

And he can learn.  He is learning.

He has so much potential.

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Tommy was very neglected for a very long time.

He has a very long road of bonding, healing, growing and learning ahead of him.

It’s a true privilege to be his mama and walk that road with him.

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P. S.  A little fur ball named Ellie came to live at our house this week~

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33 Responses to “We’re still here!”

  1. sabrina says:

    So blessed to hear that things are going well while you spend the days in the hospital with your two handsome guys. Hospital stays are always a challenge. I’ll keep praying. Love the little pup at the end of your post…too cute!

  2. Galit says:

    Wow, how is everybody managing on the home front without you?
    Praying that you can all go home soon and find your new normal!

  3. Cinderellamommy says:

    Thinking of you (which, of course,  means praying, too)! Glad to read the update and see your beautiful boys! And surprise puppy -wow!! :) 

  4. Colleen says:

    Hang in there mama, I’m sure you have to be exhausted! Praying for you all and for Tommy’s continued healing!

  5. Susanna says:

    Galit, they always tell me they’ll have it cleaned up by the time I see it. HAHAHAHA! No really, they report that having had the new schedule in their bones by the time I left has been great–everyone knows what to do when and it’s working! :)

  6. Lorena says:

    So sweet to see your dear, smiling face.  (I had to ask myself, “Is that really her?!”  You look younger than ever!)  Tommy is a blessed boy to have you mother him.  Praying for a peace that passes understanding to saturate his little heart.

  7. Nicole says:

    making positiv out of negativ !
    is it possible to be a moment of rest for you… ????   :)
    still brest feeding ? waouh !

  8. Cristina says:

    You are a courageous woman! and Tommy is in the best hands!! praying for his recovery

  9.  
    You said: “He has a very long road of bonding, healing, growing and learning ahead of him.”
    That’s so true.  But when you are stressed, tired, and discouraged just remember… you have the rest of your lives to help him.  :)  For every little step backward you take (regressions, hospitalizations), there will be many moments of joy and happiness.  
    Nothing can change Tommy’s past – as tragic as it was.  The important thing to remember is his (and your) future.  God willing, Tommy’s life in the future will get happier and easier as the years go along.  
    It’s so easy to give in to despair and depression when things are hard.  I know that all too well.  Pray for strength and light in your heart… and the clarity to see the beauty in everything, even adversity.  If you look, you will find it.  I promise.  
    Praying for you always (my dear Pleven family members),
    Lisa
     

  10. Susan says:

    So glad to learn that the answers to Tommy’s issues are becoming clear, and that some roadmaps for his journey are being [provided. Confirmation of his ability to learn is just wonderful! I hope his physical problems will continue to be resolved, so that he will be healthier, happier, and better able to focus on the other kinds of needed healing.
    Thanks so much for the  update – Tommy and everyone else around him remain in my prayers.
    Susan in Ky
    Cousin to 2 from EE

  11. Jen says:

    Susanna,
    Do you feel comfortable sharing any of the specific information you’ve learned through his tests, or what the feeding plan will be? 

  12. Barb says:

    Love the puppy! What’s one more bit of chaos in your life? Thinking of you as things get figured out for Tommy.

  13. Stori says:

    I’m so glad you are Tommy’s momma! Thank you for keeping us updated.

  14. Susanna says:

    Barb, the reason we haven’t allowed a puppy before now is that we were waiting until it did NOT add chaos to life! Ellie is Joshua’s puppy–he is completely responsible for her. He built her a beautiful and roomy doghouse, bought her and all her supplies, and will do a terrific job training her. The rest of us just get the benefit of having her around. :)

  15. Susanna says:

    Nicole, you are so sweet! I can just hear you saying this with your European accent! Love it! And yes, I am getting rest here–more than I get at home!

  16. Susanna says:

    Lisa, thank you and (((((hugs))))) for you!

  17. Susanna says:

    Jen, it’s good to hear from you! Information is still being gathered and trickling in, so I’ll give that some thought after all the results are in and we see how he responds to the feeding plan we’ll take home with us. Thanks for asking! Wish I had email here so we could talk some more!

  18. Maureen says:

    You look lovely, though reading your post, I think I am tired *for* you! Love the new haircut (or style?) Sure being away from home is no fun at all, but I am very glad they are being so cautious and thorough (and taking good care of you all!)
     
    Our fur-ball is “Ellie” too. Yours is quite cute! Give T. & B. a good hug, snuggle-n-kiss from all of us!

  19. Anna T says:

    Praying for you and for answers for your sweet Tommy…((Hugs)), prayers and love,  Anna

  20. Rachel says:

    I’m going to say this first because it’s least important but I LOVE your hair like that!
    That picture with you holding Tommy and Ben, your hands all full, is so beautiful. What a beautiful mother you are, and what a beautiful family you have!
    It’s so good to hear that progress is being made re: Tommy’s nutritional issues. It sounds like you have a wonderful team of experts who are intent on giving good care. It also sounds like they are enjoying your time there :)
    I’ll be praying for Tommy and for you.
    (And what’s the opposite of being afraid of crowds? Unagoraphobia? Do you think Benjamin will have that when he gets older? ;) )

  21. Elli Zurowski says:

    Susanna, I pray for you often. Thank you for sharing your life with all of us. You are a true blessing. I know that obedience to our Lord does not make us special (just a “normal” Christian :), but I want to thank you for the example that you set as a woman of God. May God bless you with all that you need during this (and every) season of life!
    P.S. I think Ellie is a fine name for your puppy….just sayin’ :)

  22. Susanna says:

    Rachel and Maureen, thank you, friends! I had to find a style that would look okay with no fussing when necessary, which means nearly all the time. :)

  23. Lori says:

    Prayers being said for Tommy’s healing, and for the rest of his family!
     

  24. Deanna says:

    Praying still.  Glad to hear that they are figuring some things out, that have the potential of helping Tommy.  I hope you had a great day today.
    Ellie is adorable!  I got to pet her today.  So sweet, and the look on Peter’s face!  Priceless!
    Deanna
     

  25. Jane says:

    Sending you endless prayers and love as you travel this path with Tommy.  God bless all of you and the hospital staff which are treating you so well…

  26. Cindy W says:

    So good to hear you’re getting thorough evaluation and seeing some improvement.  We’re praying.   We saw the dog house the other day, surprised but looks like a blessing.

  27. Tabitha says:

    We have been praying for Tommy every day during our Bible time! Thanks for posting the updates, we will continue to pray!

  28. Melissa says:

    I know that every day, Tommy is learning what REAL happiness is, not just an outward form that tries to cope with pain and fear. Bless you for giving him that chance. He is a fighter, and his life is just one more miracle God has given the world to marvel and wonder at.
     
    Bless little Ben–he is going to grow up as an ambassador for those like his brother and sisters.

  29. Stephanie says:

    Susie, I’ve been buried these past weeks and missed that Tommy was at DuPont.  PLEASE let me know if there is anything I can do from a distance.  DuPont is where Xander ended up when his diarrhea was out of control.  We had a rocky road, but I still believe that DuPont was exactly what Xander needed. 

  30. Amy says:

    Susanna,
    I just sent you an e-mail, and then saw in another post that you can’t access that e-mail account at the hospital. I live in Wilmington, not far from duPont and discovered this weekend that we have some mutual friends. Anyway, you and I have never met, but I learned about your blog from another friend of mine. Anyway, I e-mailed to see if there is anything you need. Since I live close by I wanted to offer to help if there is anything you need (I would be happy to pick something up, drop something off, bring you a home cooked meal, etc.)  Let me know.
    I’m completely serious!
    Amy

  31. Susanna says:

    Amy, I am so touched by your kind offer! I just may take you up on it, since both washing machines here are out of order! I’ll call Joe and ask him if he could email you my cell phone number! THANK YOU!

  32. Tatiane says:

    Susanna,
        This is Tatiane, the nurse student from Jefferson. I just stopped by to check on Tommy’s update and I’m very glad to know he is at home. You are the best mom in the whole world! It was a great pleasure to help on Tommy’s care. He is a very sweet boy and deserves all the best. Sincerely, Tati :)

  33. Susanna says:

    Tati, it was such a pleasure to meet you! Thank you for taking good care of our boy!

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