Well we have been using growth hormone for about 3 weeks now. We can already tell that her feet are growing. However each evening the injection can go very, very well or it can go very, very bad. Each night is a new adventure. She knows that it doesn't hurt...even laughs when the injection is going in. But she gets so nervous and scared before the shot that she literally causes herself to have a panic attack. We've tried rewards, being sweet, being harsh....you name it. We've even tried giving her the shot while she's sleeping.
Right now, we are using LadyBuzz and things are going pretty well. We still have to find a way to keep her calm before the injection. We would welcome any ideas or suggestions.
Monday, January 21, 2013
MRI Results
We were told that we would get the MRI results within 2 days. However, we waited and called, waited and called and the results just weren't ready. April immediately thought somethings was fishy, but me (not an alarmist) was never concerned that everything was okay. It was an emotion day when we found out that Avery's brain MRI showed a cyst in her pituitary region and that she had Chiari Malformation. The endinocrologist couldn't give us much information except that we needed to see a pediatric neurosurgeon. Wow...we were in shock. Here our loving, beautiful, petite little girl had a major brain issue. We had no reason to expect this....we hadn't even heard of this condition before. We were confused, scared, and worried.
A visit back to Nashville to see the neurosurgeon was mixed news. We were hoping that maybe the endinocrologist had ready the MRI wrong...that nothing was wrong with her brain or her skull. That wasn't the case. The Dr. formally diagnosed her with both a cyst and Chiari Malformation. He felt that neither were severe at the present moment but it was something that must be checked frequently. That meant more MRIs.
Our next MRI is this Saturday. We are spending two nights in Nashville and visiting the doctor on Monday. Avery doesn't know it yet, but our hotel has an indoor pool. She is going to be thrilled. However, she is not looking forward to the 4 hour MRI. She hates needles, shots, being put to sleep, and not having control. I hate it for her. She gets so upset and it's hard for April or I to bring her comfort. We are praying that she will feel peace before the procedure and her body can better handle the medicine as she wakes up.
A visit back to Nashville to see the neurosurgeon was mixed news. We were hoping that maybe the endinocrologist had ready the MRI wrong...that nothing was wrong with her brain or her skull. That wasn't the case. The Dr. formally diagnosed her with both a cyst and Chiari Malformation. He felt that neither were severe at the present moment but it was something that must be checked frequently. That meant more MRIs.
Our next MRI is this Saturday. We are spending two nights in Nashville and visiting the doctor on Monday. Avery doesn't know it yet, but our hotel has an indoor pool. She is going to be thrilled. However, she is not looking forward to the 4 hour MRI. She hates needles, shots, being put to sleep, and not having control. I hate it for her. She gets so upset and it's hard for April or I to bring her comfort. We are praying that she will feel peace before the procedure and her body can better handle the medicine as she wakes up.
It's been a whirlwind...
We have always had the notion that Avery was petite. At least that's what everyone would say. "Gosh, she's 5 years old? Oh, my she's so petite!" We would hear it nonstop. We frankly grew tired of it. Avery also grew tired of being told that she was little. Last May we decided to see if there was really something to this "petite and little" thing. Because we couldn't get into our own local Children's Hospital we traveled to Franklin, Tennessee to visit the Vanderbilt Children's Clinic. We were very impressed with the doctor and the staff. Avery did wonderful, however, it did take several attempts to stick her with the needle to draw her blood. The doctor actually thought Avery's body was a furnace and burned off all the food that she took in. Barring no blood/chromosome/hormone issues, the doctor told us to literally put Avery on the "ice cream diet" and try to fatten her up.
Luckily, her blood work all came back fine. We fed her ice cream about 5 times a week as we tried to jump start her body to grow. On our 6 month follow-up, I was really expecting them to send us home and tell us that she was growing, slow nonetheless. I felt that it was a wasted day of work and a full tank of gas going to Nashville and back. However, the nurse practitioner felt that there was really something going on with her growth. While Avery's body produced enough growth hormone to sustain her, so wasn't producing enough to help her grow. In fact, she was falling farther and farther behind. Our decision was to either use hormone growth hormone or not. Without the hormone, we were told, Avery would never reach 5 feet tall and could possible be as small as 4'6". At that small size Avery would need a special seat when she drove to help her see over the steering wheel. The nurse warned us of social stigma and such.
We pretty easily decided that we at least wanted to try the hormone therapy. The side effects of the drug were very rare and after doing some research we truly felt the medicine was completely safe. So, we agreed to it. Our first step in this journey would be an MRI. This brain MRI usually shows "nothing 99.9% of the time" we were told. It is just a formality that takes place before growth hormone therapy can begin to be certain the pituitary is not being hampered in any way.
We were scheduled for a 5pm MRI. Avery of course had food restrictions so she stayed out of school that day and we began our journey to Nashville around 1 o'clock to give us plenty of time. The MRI experience was terrible. Because Avery is allergic to anesthesia they couldn't give her the laughing gas to make it easier for them to put in her IV. She had a terrible time coming off the anesthesia and the drive home was miserable. Luckily, or so we thought, this was just routine and we wouldn't have to cross this MRI bridge again.
Luckily, her blood work all came back fine. We fed her ice cream about 5 times a week as we tried to jump start her body to grow. On our 6 month follow-up, I was really expecting them to send us home and tell us that she was growing, slow nonetheless. I felt that it was a wasted day of work and a full tank of gas going to Nashville and back. However, the nurse practitioner felt that there was really something going on with her growth. While Avery's body produced enough growth hormone to sustain her, so wasn't producing enough to help her grow. In fact, she was falling farther and farther behind. Our decision was to either use hormone growth hormone or not. Without the hormone, we were told, Avery would never reach 5 feet tall and could possible be as small as 4'6". At that small size Avery would need a special seat when she drove to help her see over the steering wheel. The nurse warned us of social stigma and such.
We pretty easily decided that we at least wanted to try the hormone therapy. The side effects of the drug were very rare and after doing some research we truly felt the medicine was completely safe. So, we agreed to it. Our first step in this journey would be an MRI. This brain MRI usually shows "nothing 99.9% of the time" we were told. It is just a formality that takes place before growth hormone therapy can begin to be certain the pituitary is not being hampered in any way.
We were scheduled for a 5pm MRI. Avery of course had food restrictions so she stayed out of school that day and we began our journey to Nashville around 1 o'clock to give us plenty of time. The MRI experience was terrible. Because Avery is allergic to anesthesia they couldn't give her the laughing gas to make it easier for them to put in her IV. She had a terrible time coming off the anesthesia and the drive home was miserable. Luckily, or so we thought, this was just routine and we wouldn't have to cross this MRI bridge again.
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