I did not think I was going to be writing so much about our crazy journey into parenthoo, but I actually found it therapeutic for me. Mia was discharged from the hospital after 10 days on oxygen and a feeding tube. We were in Durham for 3 months until the trial was set up at Hasbro. Mia was sitting up at 8 1/2 months, her heart slowly improved, she had (and still does have)very low antibodies to the treatment. We knew she was responding to treatment. Amongst many ups and downs (fortunately more ups), Mia has had the feeding tube removed, she has normal heart function, and contunues to improve in gross and fine motor activities and speech.
Her progress is ongoing. Although we do not know what the future holds for Mia, we have so much reason to be hopeful as new research is on the horizon, even a cure. We pray to see the cure in Mia's lifetime. Thank you to all who have helped make this event a success and all those who have donated. Cannot wait to see you all tomorrow!
Friday, July 9, 2010
Wednesday, July 7, 2010
Happy Half-Birthday, Mia!
Well, today is officially Mia's half-birthday. Five years ago, on this day, she had been in the hospital for 3 days. Testing was going as planned. I was told that Mia could NOT get sick in order for her to respond well to treatment. Her first infusion was scheduled for this day. On the night of the 6th, we decided that I needed a break from the hosital as I had not left since she was admitted. Sean was going to spend the night so I could get a good-night's sleep at the hotel.
The phone rang at 5am the morning of the 7th. Sean said that Mia had a temp of 106, get to the hospital ASAP. I had never heard of such a high temp. My father drove as my body was so numb with fear. I really thought I was going to lose her this day.
I got to the hospital. The nurse rechecked her temp, 103. Still high, but not as insane as 106. After a full workup, nothing came of it and her temp broke. Dr Kishnani came and assesed her. She said we could go foward with the infusion. She tolerated it well with no reactions. This day Mia turned 6 months old was her second chance at life making July 7th, her half-birthday, a significant day for all of us.
For those of you who may remember, five years ago today were the London bombings. There were also tornado warnings in Durham. After the fever and these 2 events, Dr Kishnani came in the room satisfied and called it an "uneventful day." I beg to differ, but was happy to see she was pleased.
BTW, Sean has NEVER spent an overnight with her in the hospital since this event.
The phone rang at 5am the morning of the 7th. Sean said that Mia had a temp of 106, get to the hospital ASAP. I had never heard of such a high temp. My father drove as my body was so numb with fear. I really thought I was going to lose her this day.
I got to the hospital. The nurse rechecked her temp, 103. Still high, but not as insane as 106. After a full workup, nothing came of it and her temp broke. Dr Kishnani came and assesed her. She said we could go foward with the infusion. She tolerated it well with no reactions. This day Mia turned 6 months old was her second chance at life making July 7th, her half-birthday, a significant day for all of us.
For those of you who may remember, five years ago today were the London bombings. There were also tornado warnings in Durham. After the fever and these 2 events, Dr Kishnani came in the room satisfied and called it an "uneventful day." I beg to differ, but was happy to see she was pleased.
BTW, Sean has NEVER spent an overnight with her in the hospital since this event.
Sunday, July 4, 2010
This day in 2005 - Off to Duke
Picking up where I left off, we had to work out the logistics of getting Mia to NC safely. The day after we made our decision, Mia was admitted to Hasbro overnight for more tests. We had to get her on a flight that had an oxygen tank (not as easy as it should be). We needed to find a place to stay, work with social workers, insurance, local doctors and the medical team at Duke, etc.
Sean and his brother drove to NC on the 3rd so we could have our car. My father, Mia, I had flights booked for the 4th. The morning of the 4th, I got a call from the airline saying they forgot the oxygen tank in Newark and we had to change our flight. In despiration and anger, I totally lost it on the man stating the urgency of the situation as we were flying to NC to admit my daughter to the hospital. After a FRANTIC morning trying to resolve this issue (I will spare you the details), we made it to Duke by the end of the day.
Saying goodbye to my family was very emotional as I was leaving behind my support and strength. Fortunately, everyone in the family took turns flying down which allowed us to have someone helping us out most of the time.
By this time, I was ready to get started, I was no longer scared.
(The attached picture was taken by my Dad at the airport)
Sean and his brother drove to NC on the 3rd so we could have our car. My father, Mia, I had flights booked for the 4th. The morning of the 4th, I got a call from the airline saying they forgot the oxygen tank in Newark and we had to change our flight. In despiration and anger, I totally lost it on the man stating the urgency of the situation as we were flying to NC to admit my daughter to the hospital. After a FRANTIC morning trying to resolve this issue (I will spare you the details), we made it to Duke by the end of the day.
Saying goodbye to my family was very emotional as I was leaving behind my support and strength. Fortunately, everyone in the family took turns flying down which allowed us to have someone helping us out most of the time.
By this time, I was ready to get started, I was no longer scared.
(The attached picture was taken by my Dad at the airport)
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