The Unofficial Harry Potter Cookbook and Cooking through My Grief

Taking it one recipe at a time. 2013 will be mainly focused on "The Unofficial Harry Potter Cookbook," by Dinah Bucholz, and how doing what I love, cooking, being with my family and reading Harry Potter will help me process my grief associated with loosing my 3 week old daughter, Ruby, on November 18th, 2011.
Join me for a "culinary magical masterpiece" throughout 2013!

Tuesday, May 3, 2011

Long Road

Early in January this year my little girl was diagnosed with something called "Precocious Puberty" which is basically an early onset of puberty. In her case a very, very early onset sent she wasn't even two yet when we noticed her issues. Her pediatrician was great at helping us along with her diagnosis by referring us to a Pediatric OBGYN, and a Pediatric Endocrinologist. They were very cautious in the beginning because sometimes, very rarely this can occur because of systs on the ovaries or in extreme cases a tumor in the brain. Luckily we were able to rule both of those issues out early in February which was a huge relief to us and to our family/friends. Along with the various blood tests and ultrasound, and MRI we also got to get her hand x-rayed to see what age her bone structure was. Alot of time girls before puberty will hit a growth spurt and then once their periods hit they stop growing. So another issue we were having to deal with was making sure that she was the size that she should be and luckily that test came out normal also...so what caused or is causing my daughter to have "Precocious Puberty?" We don't know...after talking with the doctor we felt like time was on our side and that we could wait until Summer sometime to do the the small surgery where they insert a little capsule under her skin to help control her hormonal imbalance.
Then, in early April my Husband and I woke up on a Sunday morning to my baby's diaper being filled with blood. Aghhhh, it was terrible, and of course it was Sunday. Luckily we knew what was going on and didn't rush her to the hospital, it was just her first little period at age 2. Monday didn't come quick enough and we called her endo doctor first thing and of course it was the week of spring break so he was out of the office for the week, and the doctors that do the surgery were out of their office for the week. So we put her on a progesterone pill to stop the bleeding and we worked with another doctor in the office, who was very kind and great to work with. The whole week were were trying to get our insurance to allow us to start a shot called "Lupron Depot" which is used with this disorder to help control the issue...at least until we could get the surgery done. Of course insurance was a pain in the behind, which they have been throughout this whole experience for the most part. They denied us the drug and it took me calling and crying to them that my 2 year old is having her period, and getting our Endo doctor back to call the insurance and get them to get us the shot. We finally got that all taken care of and were able to go to the Doctors office and have them give it too her (so that we weren't the bad guys). As we were carrying our screaming child out of that office visit I was so much more set on getting the surgery as soon as possible so that we didn't have to go through that every month.
We were able to set the surgery date for May 17 and things were going along fine until 2 weeks after the shot, on a Sunday once again baby girl had blood in her diaper...erk!!!Luckily we had an appointment with the surgeon the next day and we were able to get him involved with the urgency of getting this surgery done and were able to schedule the surgery a week out from then.
And that brings us to today when we woke up at 6 a.m. and drug the little lady out of her crib around 6:30 and went to the hospital for her surgery. At this point she hates doctors, nurses, and hospital beds, so we were aware that it would be a bit rough, but I was not prepared for 3 of us to hold her down trying to get her to hold still while the nurse tried to get the IV needle in her. Of course the first time failed, so we had to do it twice. I thought baby girl was going to go into shock she was screaming and crying so much! Then they wheeled her out of the room screaming still at the top of her lungs, and then we could hear her screaming in the surgery room...all the while she is screaming I am sobbing buckets of tears and my Mom also because up to date I think that is the most traumatic experience we have been through with her. Finally she stops screaming and literally a few minutes later the surgeon is in our room talking with us telling us that everything went well and good. When the nurse rolled our now sleeping baby back into our room I asked her why she was screaming for so long and the nurse told us that she didn't want the blood pressure cuff on her leg. She told us that our little girl is a fighter...which we already knew:) The wonderful thing is that finally, finally, finally the surgery is behind us. Rose has the medicine she needs and we won't have to do this surgery again for 12 more months. I am so grateful for advanced medicine and that they were able to do this to help my baby girl, I just wish it didn't have to be so traumatic for her and for us!
So, you may be wondering what happens next, well for the next 10ish years we will be doing this surgery on every May 3rd, to hold off my little daughter puberty until it is time for it to really start. And that is why this is still a long road for us.

2 comments:

  1. Amber I'm so sorry you had to go through this, It is so rough on you guys!! You all are constantly in my prayers... I can't wait to see you guys again and spend time with my beautiful little niece!!!

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  2. Oh my goodness! I'm so sorry that you guys had to deal with all of this! I am so glad that you guys are getting it all figured out now!

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