Just coming around.Well, it’s been a while since my last post. Luckily, Nathaniel has managed to remain “seizure free” since January 29th. I think the Ketogenic Diet has made a huge differance. Unfortunately, we just spent nearly 2 weeks in the hospital. On the 3rd, Nathaniel was admitted in the hospital for respiratory distress. Turns out, he tested positive for Rhino, Metapneumo, one other viral infection, and Pneumonia/Bronchiolitis…..which triggered his Asthma. We started out on one of the regular floors but had to be moved to PICU, where we spent the majority of the time. He was given steriods, IV antibiotics, along with albuterol & hypertonic saline treatments, followed by CPT, and deep suctioning every 4-6 hours around the clock. He definitely was traumatized. I felt so bad because he fought EVERY time and had to be held down EVERY time, but he really needed it. Now, any time I say “no” he just pouts and cries, cries, cries as if I’ve just spanked him. He has gotten a little less emotional, but he sure is a different baby. Luckily, he was released on the 15th. So, we can add another “holiday” to our hospital stay 🙂 It wasn’t bad though.
As far as accomplishments, he has improved in some areas. When I sit him criss-cross-applesauce, he can sit straight up if I hold his inner thigh. He babbles more….sometimes more than others. He just started saying “Ma-ma” and knows that it’s me. He can anticipate things better. Like when I sing “Ring around the rosie,” he knows he will fall back when I say, “Ashes! Ashes!” and just cracks up; or when I sing “Patty cake” he laughs before I say “Roll’em up! Roll’em up!” His little face scrunches up, his slightly flattened nose from the cleft-flattens a little more, and he smiles this big smile and it’s so cute. Since starting the ketogenic diet, his oral intake was decreased by the dietician and he had forgotten how to eat. He would just chomp, but forgot that he had to swallow, so I pretty much stopped feeding him by mouth 🙁 Which was sad for me because he LOVED food and to eat. But I recently started feeding him again-without asking BTW-and he’s done so much better. He watches and waits for the food….all protein, no carbs of course and he LOVES IT! He is now 2yrs & will be 5mths on the 8th and is approximately 22lbs, but he feels so much heavier. He still has PT 2/week, OT 2/week, Speech therapy 2/week, SST once a week, and Craniosacrial Therapy once a week….busy, busy, busy. Don’t know how we do it, but we do……don’t know how I always manage to have gas!!! I’m glad to say that even though we had this last hospital stay and there were moments that were pretty scary, things have been pretty good. He has done so well, and I don’t expect anything else. I know he will continue to thrive and surprise me more and more, but I still and always will wonder what will happen next.michael's picknick

 

3 Responses to New update for Nathaniel

  1. Christina says:

    Hi, Letty. I am glad that Nathaniel is doing better. I admire you so much. You are such a strong person and a wonderful mother. Nathaniel is lucky to have you.
    Love you 🙂
    -Christina

  2. shirley bidnick says:

    I have finished reading all about Nathaniel and you. It is a great story of human strength. Your loving commitment to Nathaniel is praiseworthy. I am looking forward to your next instalment. I sincerely hope Nathaniel’s health begins to improve.

    Rochelle weighed 10 lbs at age 2. She had a similar history of infections and seizures. We did not know about WHS then and there was little intervention, but she survived. Hopefully with his tube feedings and therapies Nathaniel will not only survive, but he will also thrive. Rochelle’s health did not turned around until age 10. She had tubes put in her ears, tonsils removed, and something done to her soft palate. After that she gained weight and started to walk. She continues to grow and develop and delight me.

    In one of your posts you admitted you use Nathaniel to get out of doing things that you don’t want to do, like laundry. I chuckled at that because Rochelle has often been my excuse not to do things. More importantly she is my excuse to do what is important, to be a loving, patient, kind, gentle, forgiving, generous, respectful, humble, honest person.

    I also like your connection of the term vacation to your hospital stays with Nathaniel. That is a positive spin. I worked full time. I use to save my vacation time for hospitalizations, it wasn’t a cruise, but I did get away from work. If too much time passed between hospitalizations, I found myself longing for one. On a serious note, Rochelle required quite a long recovery time whenever we came home from the hospital. She was always a perfect and brave patient, but the experience was still traumatic for her. It seemed she had to start over and learn her daily routine each time.

    Thank you for sharing your story. You are in our thoughts. We want the best for you.

  3. Kristen Faccioli Licari says:

    Oh…my God. I am so sorry that you guys have been going through all this! People on the outside – those who are not immersed in this life – really just have no idea what we go through. And to be expecting on top of that!!! I am glad that you guys are okay now though. You must be a tower of strength. Your son, and your soon-to-be, are so lucky to have you. xoxo

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