Listen to the MUSTN'TS, child,
Listen to the DON'TS
Listen to the SHOULDN'TS,
the IMPOSSIBLES, the WON'TS
Listen to the NEVER HAVES,
...Then listen close to me-
Anything can happen, child,
Anything can be.
-Shel Silverstein-
Ed and I took vacation this week, which allowed him to come with me to a couple of appointments. I knew it would be wonderful to have his company, but it turned out to be really important that he was there with me.
Monday we visited the school district, where we are considering enrolling Aimee in the Fall. We met the teacher of the 2 year old class, the therapists and the nurse. We were able to see the classrooms, the therapy room and actually visit a class for a few minutes. If anything, it actually made me more hesitant to put Aimee in school next year. The class is primarily made up of students that have autism, speech delays, or motor delays. There is only one kid in the school this year that has down syndrome. It has been a couple of years since they had a student with a g-tube and they have no students that are any where near as severely delayed as Aimee. It is really hard to imagine her getting much benefit from being in this crazy, loud environment. We have decided to try out putting her in the program this Fall for 2 months. We'll see what the class dynamics are like and if she is able to get comfortable enough in the environment to benefit from it.
Ed and I were able to stay down in Woodinville for 2 nights on Monday and Tuesday. Aimee got to play with Grandpa Steve and Grandma Starla for 2 days and I'm sure had a great time. We had so much fun eating yummy food (The Barking Frog was delicious!), drinking lovely wine (well, just Ed...but I got to smell it.), and enjoying uninterrupted time together. It was delightful!
Thursday, we met quickly with Audiology to get Aimee's new hearing aid molds fitted. For some reason, they scheduled us an appointment with Audiology on the 6th floor at the same exact time as Genetic Neurology on the 4th floor. It added a new fun dynamic to making it to multiple appointments. :)
Her second appointment, with Genetic Neurology, was with a specialist who focuses on hard to diagnose cases. He spent a few hours with us going over her history and observing her behavior. He said that he would describe Aimee's difficulties as a birth defect on the nerve level. He believes that 5 years from now they will be able to diagnose which gene was affected (he is almost positive that it is genetic). He said they are just now able to look at 95% of the chromosome abnormalities, but still don't know how to interpret everything that they see. They have already banked her DNA, but they took both of ours as well and entered us all into research studies. This doesn't really mean anything for us, because it could be years and years before they ever contact us back about research. He also thought of one other clinical test to try for her and then...well that's it for now.
He did say that he is fairly certain that Aimee's situation was a case of genetic mutation, not recessive genes. This would mean that a chance for recurrence in future children, according to his estimation, would be around 5%.
We have never had any doctor talk to us about Aimee's future before. It always seems like they are unwilling to commit. This doctor, however, felt that it was important for us to know what they expect from children that have such severe cases. He wants us to discuss how we feel and what we would want to do in the future if (or when, as he put it) difficult life and death decisions have to be made.
So, because Aimee has had so little progress and is already 27 months old, they expect her stay at this level for the rest of her life. There may be about the same amount of progress that she has already achieved, but that is all. He said that due to secondary causes (seizures and pneumonia), they see about 50% of kids like Aimee make it to their 10th birthday. They give about a 15% chance of making it to 20 and it goes down from there. Although Aimee has been really healthy and has had no pneumonias to date, they look at it as only a matter of time.
Although I do not believe in looking at her future based on these percentages, I don't want to ignore the warnings that they are giving me. We were surprised to hear that the lifespans of these children are so short. 15% chance of becoming an adult? That isn't great odds. We do want to be aware of these dangers, but we also know that God created Aimee and has a plan for her. We know that she touches other people's hearts. We don't want to allow fear to tell us that we need to protect her from sickness by not allowing her close to others. Yet, we do not want to be unwise and cause her unnecessary risks either. Definitely a life perspective changing day!
From here this Genetic Neurologist is referring us to meet with the Pulmonary Clinic and to potentially have a sleep study done for Aimee. Although she has always been a good sleeper, her excessive sleep patterns could be a sign of sleep apnea or other problems. He is also concerned about the sometimes irregular breathing that I described.
He will also be reviewing the results of the brain MRI that Aimee has scheduled for a week from Tuesday. They want to be sure that there is no deterioration in any areas of her brain and to see how much development has occurred since she was 8 months old. We are primarily having this MRI done for the benefit of the Neurology doctors, would want to see from the seizure standpoint how her brain looks.
