Prepared.. . . Right?

A mom can never be too prepared.  As a mother of three boys you learn quickly to always have band aids and neosporin within a hands reach at all times.  Now when it comes to bigger things happening to your child, we are not prepared and nor can we ever be.  Instead you take in the information, you process, you ask questions, you process, you ask more questions and then you begin to do whatever you can for your child.  Since Thomas' birth their have been ups and downs, then things got rockier over the past fall of 2011 when a few more things were discovered.  It has now been 24 days since we received the confirmation of the dx Klippel Feil for our sweet Thomas.    Its still hard to tell sweet people that he is fine, when while he looks fine and definitely acts like a normal active toddler he may not be fine.  Then when you talk to doctors or specialists and mention KFS, they almost cringe and lightly tread their words as to where he is and where we are going.

We had physical therapy this morning with our regular PT, love her!!  She was so impressed with how far Thomas has come with his strength in such a short period of time.  We discussed him possibly moving to the Nuero Spine clinic and she was sad that she wouldn't have Thomas anymore but was thrilled that they would be able to provide him the right therapy for his condition.  (We finally got the referral faxed over today, each place has their own hoops).  It was great to leave there this morning with rave reviews on my son's progress even with his tempered spats.

Yesterday, we went to Scottish Rite for Thomas' pre-op appointment.  It was so nice to be able to register, fill out paperwork and sit down and discuss his case without the edginess and nerves that Friday will bring.  I was able to provide her the list of medicines he is currently on, his latest diagnosis with documentation to back it up and phone numbers so she could verify information on how to treat Thomas.  She said that I got the Gold Start for the day!.  I blushed in embarrassment but was proud too.  In case you don't know me that well, I like to be in control and organized.  I control the things I can in order to deal with the frustration of the things I can't.  So, when I feel like I am loosing control I do something I can.  So, I created a binder for Thomas.

 

This things has come in handy more than one time I can assure you.  I have each of his doctors under each of the tabs and behind each tab is any medical records, notes, or test results that I have from that particular doctor.  I originally started to construct it when I was requesting medical records for various reasons.  Now I take this with me to any appointment and have most of his information at his fingertips.  I am missing two doctors at this time, but its not for lack of trying.  On an emotional front, I removed any medical papers out of Thomas' baby book and placed them in this binder.  It made me feel better to leave his baby book for only sweet memorabilia and cards instead of nasty old medical papers.

SO, Surgery is Friday and I suppose we are as prepared as we can be.  Again, surgery is not something you can get use to being prepared for.  They know his case, they are going to pull his MRI to look at his spine.  They promised me they would take great care of his neck and not extend it.  The only outstanding issue is they usually do a spinal block on this type of surgery so that when he wakes up there is no pain.  However, they aren't sure given his spine if that is feasible.  They will still manage his pain but may need to find an alternate way.  Just pray for the best.  I am confident he is in good hands and I just wish for the best outcome possible, a quick recovery and allow us to move on from here.

Faith.  I have been told I have been demonstrating unmeasurable Faith by a lady at our church who is called things like Saint.  I was humbled by her words and always encouraged.  Those of you who attend my church probably know who I am referring too as she always greets you with a hug and a smile.  So, to have her say such a thing to me was a honor.  It felt as though God himself was reminding me that I was doing a good job.  Through her words, I was also reminded that God does want us to be proactive and work hard but to always remember that even when things are at their worst he is there.  Her class had just left from their Bible study and their focus was Isiah.  I have been reading Colossians myself, which was more about what you are suppose to do.  So, I can home and this verse jumped at me:

Isaiah 43:2-3   “When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you. For I am the Lord, your God.”

I thought it was too beautiful not to share with you!!

Tomorrow we meet Thomas' cardiologists.  I will try to update you tomorrow.  I have a good feeling about it, but we shall see what tomorrow holds.

Thomas is now 21 months old

Weighs 22 lbs and is 29.5" tall