So, I met with our pediatrician on Thursday which was originally set up as just a consultation for us to review where we are, what we need and where we need to be. She is so supportive and willing to help its wonderful. We discussed the big picture and what was missing and filled in the gaps. We will get our occupational therapy evaluation set up and his prescription to have orthodics made for his shoes. He also now has his very own cardiologist and we will meet with them next week. We also discussed doing a follow up with the genetics and see where we are with the new diagnosis. I also brought her my forms and rough draft for our application for the Deeming Waiver with the State and she helped point out what I was missing and what I still need to get before she will sign off. I am so hoping to get that at least filed in the next three weeks. The medical expenses for Thomas are just really stacking up quickly. We discussed alternative ways to get help as well many of which I was already pursuing. Overall, we are both on the same page and its wonderful to have a pediatrician that I can depend on lean on for support.
Thomas also has started a cold with a runny nose on Monday and coughing on Wednesday. When Thomas gets a cough he seems to get that seally sounding cough very quickly which means breathing treatments. I loaf them more than you will ever know but he has got to clear for surgery next week. We are meeting with Anesthesiologists on Tuesday to have him looked at and to discuss the sedation for the surgery. Its imperative that due to his neck they must use fiber optic. Please pray that these awful treatments clear him up and we can get this surgery behind us.
Thomas has Cryptorchidism, which is a really fancy way of saying his testicle didn't develop correctly. We aren't surprised of course since so many things didn't develop correctly with Thomas. But its imperative that they cut and make sure that they can locate the undeveloped testicle or else it can lead to hormone issues and possibly cancer. We won't know for sure until they cut. If its not in the scrotum then they will have to go look in his abdomen.
I am hoping to breath easier after next week but I can tell you January has been one hell of a month. I keep having to remind myself that the diagnosis is still new and fresh and it takes a while for these types of things to sink in. I think other people accept it much easier that Thomas is and will always be 'special needs' whereas I have always had a bit of denial and minimized it. Its not that bad was always my thought and my heart goes out to other kids and other moms whose situations are worse than mine. But the problem is to look at Thomas he seems pretty okay, manages quite well and is extremely happy. Then you look at him on paper and all of the medical issues on paper and you realize he is 'special needs'. You add up all of the expenses for the Deeming Waiver application and you are floored at the amount of money it takes for routine testing, therapy, all of his specialists and it gets crazy insane. I took some time and made a binder for Thomas that has tabs for each of his specialists and behind each tab is the medical records that I have received copies of and any other information from that doctor. I figured for now it will help me relay information when I need too. I know eventually the binder will become a drawer but I like my binder for now.
On a personal note, I am working on sharing. I think the blow of my son having KFS was so hard on me that I didn't want to share what it really meant with those around me. How silly does that sound? I was trying to protect others. I hate to upset others with the news because, well frankly, its not good. I am getting better at it though and these things probably get better with time. I shared with my regular cashier today at Kroger and she was in tears when we were done talking. She has such a big heart it was beautiful. The amazing thing was I told her about it, answered her questions and told her in confidence that no matter what God is good and God is going to take care of us. She smiled and said "God Bless You". People will use those words in passing here and there and when they are at funerals, but when she said those words to mean, she really meant for God to Bless me.
More than once this week I have heard many compliments about the kind of mom I am being and how strong I am. I have a hard time taking compliments. I am not sure why that is except that I really don't think I am extraordinary in any way. I am just a mom doing what I am suppose to do for my son with my Abba Father standing with me the whole way. I am learning, however, to use to words as a response 'thank you'. I do want to share with you what a sweet friend wrote about me, but what I want to share about it is that it is the prayer of every mom in their heart and you should insert your own name in it.
Please let me be an advocate for my children even if it is disruptive to
my own peace. Please let me be an advocate for my children even when it
means doors will close to me and people will be angered with me. Please
let me be an advocate for my children even when it means that I may not
get the answers I want. Please let me always put their needs first even
when it means putting mine aside. Please give me the energy and the
drive to not sit idle in the face of adversity, but to be a proud
warrior and face it head on. Please God let me be a mother like my
friend Allison Myrick Jolley who inspires me daily with her faithfulness to God and her dedication to her family.
I love you all so very much and covet your prayers daily. I will keep you updated next week especially after Thomas' surgery.
Prayers to you and family Allison. I can say I relate to the side of finding out something is wrong with my child but never had to deal with the surgery side. You are a strong person and a great Mom. I feel the same when people say your one strong person but they do not see me crying at home it's hard but we just do what we have to to get what our children need. Good luck with the deeming waiver they are hard to get all processed. Hope all goes well with surgery. Thinking of you all,
ReplyDeleteJenn
Thank you Jenn. I am not sure you can truly compare what one mother endures to another. Your story is heartbreaking and something that can never be forgotten. You are a strong person through and through and a fabulous mom yourself. We cry because of how deep our love is and how strong our commitment runs for our children. As you know prayers and support are always coveted and appreciated. In the dark times when I am crying in my room, I try to remember all of those who are praying for me. Always wishing you the best Jenn!! Thank you,
ReplyDeleteAllison