Tuesday, May 4, 2010

one day at a time ...

we seem to be hearing a lot of this phrase from both doctors, nurses, and friends alike. I have yet to meet a mother that takes her child's life one day at a time. A mother dreams of her child's future and abilities, the experiences she will have and the person she will be come. Never does she imagine those experiences to include injecting your child 5-7 times a day with insulin and checking her blood sugar that much more. I don't use exact numbers because I don't even have knowledge of those yet so i guess ill just take one day at a time huh?

CJ's sugar has come down to a normal level (normal for those on insulin drips is around 125) and she will be taken off the IVs shortly. We will be leaving the PICU soon and heading to the Ped's floor for a crash course in Diabetes and the care involved, we will be there until about the end of the week. We med with Dr. A and Dr. P who are her Pediatric Endocrinologist and Geneticist respectively. Our next mission is to determine the cause of the diabetes so we can assemble a short term and long term plan of attack and management. Eddie and I, along with Aiden will most likely undergo genetic as well. We also had a visit from our pediatrician who I can't thank God for enough. Those of you who know we've been kind of hopping back and forth between pediatricians since our beloved holistic on stopped taking insurance. After much prayer and deliberation Eddie and I have decided to put the worries of cost aside for now and work through that as the time comes, but it is of more importance to us that we have a pediatrician who is on the same page as us and will help us achieve the care and lifestyle we want for our daughter regardless of her diagnosis. The intensivist we met with on our first night here showed us very quickly how unsupportive of our lifestyle habits he was i.e. non-vaxing and breastfeeding past the age of 1. I understand we are now playing with a new hand of cards and we will be re-evaluation our vaccination (or lack there of) decisions since CJ will be living will a compromised immune system from here on out. Also since diabetes is very rare in children Cara's age the intensivist prefers to match their insulin to a perfectly portioned meal intake encourages bottle feeding be it pumping or formula. Here is where our gratitude for the blessing of our pedi comes in ... him and the endo are both very supportive of our goal to breastfeed to 2 and believe that it is worth the extra work and guesstimating it might involve in regards to her insulin intake. Our Pedi is also planning a sit down with us once we have her sugars under control from home to scrutinize which vaxs might be beneficial, a conversation I feel completely comfortable having with him as we are both on the same page and he is currently pouring over books to help us find as many holistic treatments as possible for CJ now and in the future. He is one of the leading pedi's in the area (well pretty much the only) to investigate and question the use of vaccinations and was not only tolerant but supportive of our decision to not vax so again it is such a blessing to have him on our side.

Cara did experience her first low today (along with her first taste of juice) which was a bit scary for me. Since one of her arms are bandaged into a splint to keep her IV in place she was not able to hold the sippy cup she finally accepted on Sunday, and being a control freak like her mama she wanted none of it. I had one of those moments where it dawned on me that I am not going to have an IV to adjust at home should she refuse our attempts to raise her sugars via food/drink. It scared the crap out of me quite frankly. The numbness is waring off and the reality of the situation is starting to hit me in waves, I'm sure the learning process and the experience of checking her sugar/giving her her first injection will be a reality shock all it's own. Daddy has already mastered checking CJ's sugar and as bittersweet a situation as this is she is developing quite the bond with Daddy whereas when home it needs to be Mommy Mommy Mommy 90% of the times. In fact she woke up half way through this poast and has been playing with Daddy the entire time! A miracle all it's own! I can't say enough how happy we are to see CJ back to her sweet and cheery self. The doctors can't get over what a happy and social baby she is demanding high fives from every one that walks in the room and showing her boo-boos to the ones she comes to love. I have taken a few pictures over the last two days but for some reason blogger is not giving me the option to upload them ... if anyone can help me figure this out it would be great as I'm not sure if it's the internet connection or what not causing that. Until then I'll upload them to FB :)

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I'm a crunchy born again momma living in suburban NJ with my sweet husband and our three little gifts from God.