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This week we had a huge win. After going through a significant amount of paperwork and waiting, we received a call from CHOP (Childrens Hospital of Philadelphia) calling to schedule Charlie’s developmental evaluation. It is not 9 months from now….it is next week!!! I feel like I have just hit the jackpot and am so happy and relieved that after months of waiting and stressing over where and when we were going to find a new doctor to work with (since ours retired), we have a plan of action in place.

There are many wonderful doctors, facilities and hospitals in Philadelphia and the surrounding areas but it has been our goal for quite some time to get him into CHOP for a variety of reasons. This doesn’t mean that there are not many other great places we could work with for Charlie but we believe they are one of the very best and have friends who have recommended we go there. We also love the idea that we can start seeing physicians in various departments who are all working for the same system which should make our lives easier. More importantly, I feel secure in knowing that as of next week we will be back under a physicians care for our son and that is something that gives us peace of mind as we currently are without a developmental pediatrician for him.

My first reaction to getting the appointment scheduled so soon was happiness and relief but then panic set in over rearranging schedules and securing a babysitter for Owen so we could avoid having to bring him for the lengthy evaluation. Luckily everything has worked out and we are all set for our appointment next week. It is interesting to be going through a 4 hour evaluation yet again for Charlie but the difference this time is I don’t have apprehension or nervousness about what to expect, what will occur or how Charlie will react during the process because we have done this before and its nice to know what to anticipate. At this point in time, there is not much that could or would surprise me in regards to a diagnosis or evaluation of Charlie and we are pretty much doing all that we can to help him. Of course, I am scared of what we may find out after the evaluation but as I have written before, knowing is way better than not knowing so we will take whatever they say in stride as we have tried to do for the last year.

Securing appointments and services for my child has been difficult to say the least and the process is excruciating and time intensive and can be so very frustrating for parents who simply want to get the help they need. On the other hand, it is challenging for the doctors and facilities because these appointments take so much time that only a few can be scheduled each day and the demand is great. Over the holidays, I had dinner with two college friends and one who I had not seen in many years has worked at CHOP for 15 years. When I told her about Charlie and what was going on and mentioned the waiting list of 6-12 months at CHOP, she went above and beyond in assisting me and for that I am unbelievably grateful. I know that she is the primary reason why we are being seen so quickly and there are no words to thank her for stepping in to help us. There was a time when I would never have considered bringing up our situation with Charlie at a dinner with friends and especially not with someone who I have not spent time with or talked to in a long time. I am happy that times have changed for me and that instead of being closed off, hesitant and unsure about putting it out there, I shared our story with no expectation or knowledge that she would be able to assist us. Had I bitten my tongue or not been honest, I would never have known that she could make a miracle happen. We are lucky to have so many family members who continually support us daily but what continues to astound me is the connections I have made with acquaintances who for no other reason but simply wanting to help, step in and step up in any way that they can. It is a good reminder for me to continue to try to do the same for all of those people I come across who could use a helping hand, a tiny favor or access and information to something I may know about. So thank you my friend for taking the time, making the effort and simply caring enough to utilize your incredible resources to ease our journey and most certainly make my week!

3 comments on “The holy grail…..”

  1. Hi,
    First, I just want to say that I sat in my car while I waited for my two boys to get done with preschool today and could not stop reading your blog. Your story is so similar to mine…right down to a friend getting us in early for dev. Ped appointment & a younger son named Owen šŸ™‚
    Declan, My almost 5 year old was diagnosed last march on the spectrum after being told for 2 years “he’s just a little boy with speech delays” from top doctors and “he just has some sensory issues” from teachers.
    If it wasn’t for a random special instructor at his school (who is now with him 3 hrs a day at preschool) that noticed his intense need to sensory input I would still be clueless (which I still feel like I am!)
    My sister, liz Farrell, directed me to your page and I’m sure glad she did. It’s nice to feel like you’re not alone in this šŸ™‚
    Can’t wait to read some more

    • Erin,

      I am so glad you commented and even happier to know you can relate! That was why I started the blog honestly, not only for a place to share my own feelings regardless if anyone read them but in hopes of connecting with other moms and dads who are going through similar circumstances. It can be very scary and isolating so please feel free to reach out to me any time!

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