Road Trip & Test Results

We just returned from a trip to visit my younger sister Melissa in New Albany, IN. Her toddler Alex was a cutie. Joe, Maizie and me went with Melissa and Alex to Build A Bear and Maizie made a pink cat. Alex got a baby kitty and enjoyed watching Maizie go through the Build A Bear process.
The weather felt warm compared to Fort Wayne. On the day we babysat Alex we were able to go to a park. Maizie and Alex ran around, enjoyed the swings and we saw lots of geese and ducks. Best of all, we had Zestos! Talk about making us hungry for Spring! Yummy!

The trip was overshadowed with some test results we had in regards to Maizie's health. Her doctor had run some blood tests that revealed some abnormal levels that may reveal a Metabolic Disorder. Possibly this news is a blessing and we will be able to help Maizie attain better health.

Finding help is turning out to be the next challenge. Her doctor did not know what to do about the test results and says he is researching a specialist for us to go to. I want to give him the benefit of the doubt and assume he is carefully looking into where we should go. I am growing impatient waiting for his response. He says what we are looking at is very rare and so it will be difficult to get help. I suppose this battle is once again, the first of many. There are always the lovely insurance company battles to look forward to.

My sister's father in law is a physician and was able to research some articles for us. He said we should research and learn about inherited metabolic disorders and take an active approach to getting help. Joe and I did a lot of research using her test results and came across a hospital in California that specializes in pediatric inherited metabolic disorders. Most of the other places only had services to assist children that had all ready been diagnosed with PKU syndrome or a few other well known syndromes. Since we are needing a definite diagnosis we need to find a place that knows what to test for. There may be some genetic testing involved, but once again, we need a doctor who knows what to look for.

This could be a piece to the puzzle we have been looking for. Maizie's seizures have been fewer but these tests may point to a higher incidence of non visible small seizures taking place. I was so shocked at these results since she has been doing better than ever. A few of the test findings are said to be common in children with autism. Due to the results Maizie's doctor had her go back up on the medication we were trying to wean her off of. It is more than likely working to try and protect her brain from the probable damage taking place. Whatever we are looking at it seems linked to her developmental delays and 'seizures'. Until we get a diagnosis the doctor does not want us to change her diet or anything. He thinks we are pretty lucky she is doing so well and encourages us to keep doing what we are doing.

I did get her an appointment with her neurologist in Indianapolis. It is unlikely that he will have the answers we need but until we can get her into a specialist the doctor thought it would be an okay idea for the neurologist to see her again.

Ironically, on the way to my sister's Maizie had a seizure for the first time in two months. I had just hung up the phone with a friend and mentioned it had been a few months since she had one, we pulled over for gas and within seconds the seizure happened. It was mild and Maizie was fine afterwards.

Joe and I are both struggling with mixed emotions and are frustrated that it has taken us so long to get Maizie a definite diagnosis and help. We want to have the tests ran again and have doubts in regards to accuracy. When no one can explain them very well that certainly creates doubt and confusion.

We appreciate every one's prayers and support throughout what has been a long journey through several different diagnosis's and rough times. As we all know with rough times and challenges comes much joy and blessings. We have a lot to be thankful for.

I debated if I should blog about these health issues. I wish all of my posts could be happy and fun but that just is not the way it is. Having a sense of 'normalcy' is important to us. But, at the same time our challenges in helping Maizie are so much a part of our daily lives that omitting all of the details would feel strange. I have decided to share bits and pieces.

On top of all of this I have been working on my work for my sociology class. I finished the work due for today and have a paper due Wednesday. I am really struggling with fears of not being able to finish school. I need to not worry about it. I just went back to school this last Fall. I had went back when Maizie was three and within weeks she was doing so poorly and had to be hospitalized. I managed to finish the classes but was unable to return until recently.

I had vowed I would not return until Maizie was doing well enough that I could handle the extra stress. Luckily, I have forced myself to only enroll in one class each semester. But, with her needs, homeschooling and my own life it feels like a lot. I really want to finish my degree so I am going to hang in there. I envision feeling very happy and relieved that my degree will add to my ability to find a rewarding job when I am eventually able to work. I have had to accept that I can't be involved in the extras that university art school has to offer right now. That has been hard to accept. When I want to do something I want to do it all. I have to remind myself that my most important priorities lie elsewhere right now.