A Bruised Reed

A bruised reed He will not break, and smoking flax He will not quench

Update January 21, 2009

Filed under: Uncategorized — Jennifer @ 3:27 pm

I apologize for the delay in posting an update on Josiah. The last few weeks have been unbelievably busy, and as I was thinking yesterday, I realized that it has been almost three weeks since surgery!

The surgery went safely (as I’m sure most of you have already heard.) We are so thankful!! Josiah was able to come home the next day… I was apprehensive about it, but it was for the best, as we were not able to get quality sleep in a hospital room with several other children. Within a couple of days after discharge from the hospital, he began to have flu-like symptoms. Hannah and I had the flu over Christmas, so my instinct told me that it was the flu. But red flags went up because signs of problems with hydrocephalus are almost identical to signs of flu. So, following the recommendation of the surgeon’s nurse, we made a trip into the emergency room at Children’s on Monday (the 5th.) It did turn out to be the flu, thankfully!

The following Monday (the 12th) he had an MRI, and then an appointment with the surgeon on Tuesday. She did note some changes in his head, and when I asked some more detailed questions about what his body might be doing, her answer was to shrug her shoulders and whisper “I don’t know.” We are not extremely concerned about her response on one hand, but on the other, it is hard to wonder about how things will progress. The surgeon has a motto of allowing the child’s body (through tests) to dictate what is done next, rather than following a “cookie cutter” plan. While spina bifida patients have many of the same problems, no two cases are alike – the neurological system is so sensitive, and every body learns to “re-wire” itself in a different way.

So we are, once again, waiting. Josiah is scheduled for another MRI and consultation the end of February. I would like to say that we will have answers at that point, but, most likely, we will either find out that a shunt is needed, or that we will have watch and wait longer.

Josiah continues with a full schedule of therapy sessions – we are looking forward to adding speech therapy, as well as an additional session of occupational therapy every week. More equipment and supplies are making their way into our home… we will be picking up his standing frame in a few days. I’m so excited about this! And we were able to increase and change our monthly catheter orders, with the hope that it will help reduce the risk of bladder infections.

Hannah has been such a helper around the house, learning to pick up her toys and make her bed. Even washing her crayon “artwork” off of the wall and floor a couple of days ago! 😉 She has so much fun being a big sister.

Again, I’m so sorry for not posting this sooner – the last few weeks have evaporated rather quickly. Please continue to pray for Josiah’s health. He has been consistently struggling with various bugs since surgery. His current cough and congestion are rather unpleasant – I would love to see him feeling 100% again.

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6 Responses to “Update”

  1. Charles Telfer Says:

    What lovely pictures, especially of the kids hugging!

  2. I recently became aware of Joshua’s condition from my sister Carol. What beautiful children and how hard it must be to deal with such a situation. It looks like you made the right decisions. I will certainly keep Joshua and your entire family in my prayers that he has a full and life-long recovery.

    God Bless,

    Bernie Bessette

  3. Carol Zuccaro Says:

    I’m Tim’s cousin Carol from Vermont. Your children are beautiful. I’ve been praying for Josiah and all of you since I got in touch with Tim about a year ago and Betty told told us about Josiah. She had also sent photos. Seeing the photos is great because now when I pray for little Josiah, I can picture him. Know that Josiah and all of you are constantly in our prayers.
    love,
    Carol

  4. Carol Zuccaro Says:

    Just want you to know that I will place Josiah on our prayer chain at church.
    Carol

  5. Hi Jennifer
    Thanks for your note the other week. I am glad things are settling down for your family again. We will continue to pray for protection for Josiah and strength for his ammune system.

    Thank you for the website for the stander. I was wondering too if Josiah’s old stander is adjustable at all. We have someone in town who is willing to adjust one to Whitney’s measurements for us. Just thought I would check with you.
    ~Susan

  6. Thanks, Jennifer. I really appreciate your honesty. I have to say I did save Whitney’s first AFO’s even though they are a little stinky. (: I have not tried many places as of the last month. I grew tired of dead ends. I thought it would be easy to find but it seems they must be stored in many basements around the US. I can try to get excited about looking around again. (: So, I will look for a plan (a) but I would love to keep you as my plan (b) since you are my only lead. Please tell me if you think about it and would rather not. I would of course plan on paying whatever you would think resonable. Whitney is curently 32 1/2 inches tall if that helps. ~Susan


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