Today was a busy day--starting with the neurologist in the morning and ending with Early Steps in the afternoon. But, hey, it's just another day in the life of Brandt.
This morning, Brandt and I made the trip down the Loxahatchee to meet with the neurologist. Unfortunately, Darrin had work obligations and was unable to go.
The neurolgist reviewed all the recent testing ordered by himself and the geneticist, including the brain MRI and bloodwork. Thus far, everything has pretty much came back normal, other than some mild anemia, chronic otitis media, and environmental allergies--certainly nothing that would explain Brandt's delays. Last month, Brandt had an MRI of the brain. Because he was having respiratory difficulties, the testing had to be stopped two images short of completion. We were told those two sections of the brain--diffusion and fiesta--were very important parts of the brain. The neurologist, however, did not think that those were particularly important to Brandt's symptoms. So, yay, the brain MRI is normal and does not have to be done again!
After noting that everything thus far has been normal, he asked me what the geneticist thought might be the cause of Brandt's delays. I was speechless--the geneticist was leaning towards the neurologist's brain MRI for answers. Now, knowing that the MRI came back normal, it seems as if no one really has any direction or answers for us.
The neurologist noted that Brandt is close to the age when they begin to consider children for autism. He said indicators start to develop around Brandt's age, and he warned me of things to look out for. He said that Brandt does not seem to show many of the common signs, such as limited eye contact and anti-social behaviors. Still, Brandt's slow verbal and physical development might lead one in that direction. So, he said that we would give him a few months of monitoring before exploring that possibility.
And, then, came the toughest question: are the three spinal MRIs still necessary? I explained to the neurologist that Brandt is pulling up and cruising all over the place--he just doesn't have the core control or balance to walk yet. He examined Brandt's sacral dimple again (an indentation on the spinal cord around the toosh). He said, given that Brandt is not walking, he wanted to proceed with the MRIs. I then asked him to explain to me what he was looking. He explained that, obviously it would detect spina bifida, but it would also look for a more common condition, known as tethered spinal cord syndrome. He further explained how this would limit muscle control, despite strength, and could cause severe problems later in life. A tethered cord can be easily fixed with a few snips (yes, I know, surgery is not ever really "easy") and will prevent future complications. And, so, I accepted his rationale and got everything scheduled.
Later in the afternoon, Darrin and I met with Early Steps for our six month review. Our family service coordinator came out to our house, and we discussed some of Brandt's achievements, as well as areas where we wanted to focus more. I told her that I felt like we weren't doing enough for Brandt, and I told her that I would like Brandt to be receiving occupational therapy services, as well. She told me typically, Early Steps would wait until he was 20 months old, offering him time to "catch up." In the same breath, I quickly stepped in--stating that I'd rather narrow the gap now so that he'll hopefully not need services in the future. I then told her that I wanted to take the "early steps" now that are necessary to guarantee him a brighter future, which is what Early Steps program is all about.
The family service coordinator then handed me a 16mo Milestones questionnaire. In my head, I thought I might need to tank the test to make it work for us. Then, as I proceeded to read over each question, I felt compelled to boost his score because I was so shocked and saddened at how low he was scoring. Some of the questions seemed so far off for him, I felt like I was failing him as a mother. The questionnaire tested him on gross motor, fine motor, communication, social and problem-solving skills. Out of 60 possible in each area, Brandt scored 15, 15, 20, 45, and 40 respectively, with all scores below 35 being "at risk." I was a little taken back with all the things the questionnaire indicated he should be able to do that he couldn't. Still, I was okay because scoring low makes it easier for him to get more services.
We also discussed the desired outcomes that were written into our Family Services Plan back in March, as well as the lack of progress made towards those outcomes. We had two outcomes. 1) By 15 months, Brandt would be walking independently. 2) By 15 months, Brandt would be able to say 3-5 words. Neither of the outcomes were met, however, some of the smaller goals within the outcomes were met. Based on that, physical therapy will be continued at one time per week. Speech is now authorized for two times per month, and an order for an occupational therapy evaluation has been made.
I am satisfied with the new Family Service Plan for now--though I wish the frequency of therapy was more. At least we are moving forward in the right direction.
Then, reality sank in. I had to tell my husband about the spinal MRIs--the same MRIs that has had us going head to head for the past five months. And, just as predicted, telling him started world war III again. He is so against all of this testing, mainly because he is afraid of Brandt getting hurt in the process. And, I am strong-headed about doing whatever I need to do to offer Brandt the best possible outcome. And, if it is something that could be so simply corrected, why wouldn't I want to check for it?
But, now, I am stressing out, trying to figure out how Darrin and I are going to cope with the MRI process again. Last time, we nearly killed each other. Darrin was so mad and stubborn at the hospital that he was useless and just made things worse. And, I was so over-stressed that he was being so resilient that I put his parenting skills up for question. I often feel like I am battling for Brandt alone, and battling against Darrin makes it that much harder. I hate doing this alone, and I hate always having to have my guard up against my husband. I hate what this process has done to us as individuals and as a couple. It has torn us apart. Our strength as a couple depends on answers to start coming in. Just thinking about going through all of that again makes me want to fall to the floor in tears. Only, if I did, no one would be there to catch me--I'd be all by myself, as always. And, if I showed that moment of weakness, would I have the strength to pick myself back up and carry on? So, I must ask myself--how much more of this do I have the strength to carry alone?
One thing is for sure, there is an incredible amount of strength to be found in struggles!
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