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.
Saturday, November 24, 2012
Halloween 2012
Avery had a great Halloween. She couldn't decide what she wanted to be and tossed around many ideas over the weeks that lead up to Halloween. When it came to it, her choice was a butterfly. We have no idea why she chose a butterfly. When we would ask, her response was simply because it's beautiful!!
She was a beautiful butterfly!!
Thursday, April 19, 2012
Stomach Bug...
I must say, in Avery's 5 years, she has only had the stomach virus one time....until today. We have been so very lucky and blessed that this nasty virus has eluded us. Unfortunately, last night it hit.....of course, it had to happen the morning before we were to head out for the beach.
While the stomach bug is never fun, I must say that Avery was a true trooper. She never cried, whined, nor made a huge mess. I'm not sure if you can say this, but she is a good puker. She did a great job of holding it in until we got to the bathroom or until the puke bucket was properly positioned.
This, of course, kept us awake until about 5:00 am this morning. Our plan was to head out for the beach at 8:00. She had been looking forward to this trip for so long and we really thought that we would be cancelling. But she recovered miraculously. When she woke up about 8 am, she was hungry....and literally has been eating all day. I'm not sure if she had a slight touch of the bug or if it was simply her supper not settling, but today she has been fine. In fact, as I type, I am listening to the waves crash in.
We cleaned up the mess, finished packing, dropped the dogs off at the vet, loaded up the car, and headed out around 11:15. We were on the beach making sand castles by 4:00. At 4 am this morning, I truly didn't think we would even take our chances of going to the beach, let alone be enjoying the sun.
We are looking forward to a great weekend. We also are saying our prayers, that if this was the stomach bug, then no one else catches it.
While the stomach bug is never fun, I must say that Avery was a true trooper. She never cried, whined, nor made a huge mess. I'm not sure if you can say this, but she is a good puker. She did a great job of holding it in until we got to the bathroom or until the puke bucket was properly positioned.
This, of course, kept us awake until about 5:00 am this morning. Our plan was to head out for the beach at 8:00. She had been looking forward to this trip for so long and we really thought that we would be cancelling. But she recovered miraculously. When she woke up about 8 am, she was hungry....and literally has been eating all day. I'm not sure if she had a slight touch of the bug or if it was simply her supper not settling, but today she has been fine. In fact, as I type, I am listening to the waves crash in.
We cleaned up the mess, finished packing, dropped the dogs off at the vet, loaded up the car, and headed out around 11:15. We were on the beach making sand castles by 4:00. At 4 am this morning, I truly didn't think we would even take our chances of going to the beach, let alone be enjoying the sun.
We are looking forward to a great weekend. We also are saying our prayers, that if this was the stomach bug, then no one else catches it.
Sunday, March 4, 2012
Bone Age
We recently took Avery for her 5 year old check-up. Her previous pediatrician had just retired so we were meeting her new pediatrician for the first time. Avery behaved well during the visit until it was time for her shots. The girl had a come apart and it took both April and I (and the nurse) to hold her down. Needless to say she HATES shots!!! Since this was a new pediatrician and since Avery had just reached the 5 year milestone we felt it was appropriate for us to voice her concern about her size. She has honestly weighed 25 pounds forever and we worry about her size as she starts Kindergarten in August. We found out that she is in the 3rd percentile on the average growth chart. Dr. Crum told us about a simple test that would let us know if we should be concerned. This Bone Age test was a simple x-ray of her forearm and this x-ray would be compared to other images. The radiologists could give Avery's bones an age....the younger her bone age the better because it would mean that she would grow longer than most people. Avery's bone age was 40 months (and she is really 60 months old) so this was a good sign but she did measure really close to the standard deviation that would have her classified as "short stature". A short stature diagnosis would mean more testing with an endonicrologist. Dr. Crum felt that right now we should just keep a close eye on her growth and continue to have Bone Age tests at her 6th and 7th year old check-up. It's possible that she is just going to be petite....but without knowing her genetic make-up it was important to us look deeper into the matter.
Don't eat Gumbo!!!
Avery informed me that you shouldn't eat Gumbo.....'cause it gives you Galleria.
:-)
:-)
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