September 30, 2012

As if our life is not hard enough......

Hey everyone,

So life has been a but challenging recently....we went to Cincy at the beginning of August for her appointment with the Neurodevelopment team and follow up brain MRI. She had not had one in 3 years since our "big stay" in 2009, so her team just wanted to follow and see how she was doing. They do not anticipate any change, but with Jenna you never know.  So we made our trip, thankfully my mom could take off from work and go with us so I would not have to be alone. Daddy had to work, but someone has to make the bacon, right? So off we went to our home away from home. We arrived and did her appointment with her team, which she was cleared well. They felt she was doing fine and very happy with her progress. An emergency heart surgery, cancelled our MRI until the next day. Jenna has to have a special anesthesia team with procedures, so we had to wait until they were available since our situation was elective. So after our appointment we tried to enjoy the day in town. We went over to Newport on the Levee and enjoyed the Aquarium, thanks to Guest Services donating the tickets to us and also enjoyed dinner. Such a great time!
Mommy and Jenna


Meme and Jenna on the Levee

The next day we arrived bright and early to the hospital for her MRI at 8.  She did well, occupying herself with the baby dolls and such with Meme, while I answered questions for the staff. They had done a chest xray the day before since Jenna has had a cough again for a few weeks, so we wanted to make sure that she was not sick.  We got the all clear, so we proceeded with the MRI. She did very well, but was very grumpy afterwards. She cried and cried for the ipad, but they felt like she may be delerious from the anesthesia, so was making sure she could drink and eat before releasing us. Usually we stay overnight after all procedures, but they felt comfortable after this time to let us go. Once she got the ipad in her hands, she was good to go-figures! So we packed up and went home! It was late, but we made it. The doctors were to call me in a few days with the results, again they felt like she would have no change.  A few days later, we arrived home and I received a call from Dr Shapiro, her neurologist in Cincy. I had already seen the report, because we are linked with her records and see things, even if there is no call from the dr. So, I knew things had changed. He explained to me that from a brain perspective, she was no different, she was actually better than in 2009. Her brain had grown, which was good considering her situation (no oxygen to her brain for 10 minutes) due to her code. However, what they felt was a fat deposit on scan in 2009, had now grown in size and was labeled a dermoid/epidermoid cyst. He said that it was located on her brain, between the skull and brain, not in it. He said most of the time they are not cancerous and he wanted us to see a neurosurgeon, just to be sure. So here we again......another diagnosis to add to the list. I was a wreck, because I thought, you know I can handle and have handled many things with her, but possibly brain surgery?!?! No, not in the cards for us, our hand dealt to us was and is still difficult, don't give her this too. Please, by no means think that I am upset with my little girl. I know it is not her fault, and nor am I "complaining" as my life as a mother. I am just frustrated because she is being put through something else. Some people mis-interpret how I feel about things and think I "get tired" of my life, but in no way do I do that. Soooo we moved on and waited to hear from the team.  A few days later I received a call and she was scheduled for late October to see the dr. They said he had reviewed the films and felt comfortable to wait the long, which made us feel a little better that possibly things were going to be ok.

Meanwhile during all this, Justin's dad had a stroke and severe heart attack. He was hospitalized, had a heart cath, stayed in ICU and scheduled for bypass surgery all within a week. He had developed vision changes from the stroke, so he is unable to drive. We discussed with his heart surgeon about the vision changes and this is when they noticed he had a stroke, with brain swelling. So, unfortunately we had to wait for 4 weeks for his bypass surgery. Thankfully, we had his sister Betsy, best friend David and brother Jonny to help take care of him during this time. It was very scary, but he made it through, had his surgery and did well. He has since decided to retire and relax at home, because he says, "I am a young pup, and I need to enjoy things in life." So sounds good to us, we are just happy he is doing well.

Toward the end of September, we received our first letter from Make a Wish stating that we were going on our trip December 2-8 to Disney!! Yay!! We started received puzzle pieces she would be putting together and is sooo excited to go. We cannot wait!

Also, we received a call that her heart cath that was to be in early October, had been cancelled due to an emergency with her surgeon. Very unusual for him, but we just sat on needles for a few more weeks waiting to know what the next few months would hold. It was rescheduled for October 23, right when we were going to be seeing the neurosurgeon. So I will keep everyone posted on how things go!

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