Trip to the Neurologist (3/28/17)

The trip to the neurologist

March 28, 2017

Yesterday, Kalen had his regular neurologist appointment. Kalen visits his neuro every six months, usually. This time around, it was 9 months because I had to reschedule because Medicaid transportation sent a car to the wrong address and would not send another one out to the correct address. I had a feeling this visit to Texas Childrens would be interesting.

First, Medicaid transportation changed the rules for round trip travel. If a child is able to catch the bus, the company now provides bus passes versus sending out a car. Brad (my oldest) has to ride in a car and has a level of need on file to not ride on a bus, due to safety issues. Kalen can ride either in a car or on a bus. The problem with riding the bus is Kalen’s mama has limited experience riding the busses and trains in Houston. Stacie is also bad with directions. We may get lost. We may have to leave earlier to make sure Stacie does not get lost, confused, and frustrated.

Google maps was my best friend yesterday. I took two busses to get to the hospital. The second bus had a different design with narrow steps to get on the bus and fancier seats. I had to slowly carry everything up and down. I hate heights. The driver asked me where I was going. I said medical center. He said I had the right bus and get on. My brain was not processing why he asked me where I was going and not the other passengers. The ride was peaceful and quiet.

I was happy when I spotted Texas Childrens When I got off the bus. 

New Suspected Diagnosis: ADHD

Attention Deficit Hyperactivity Disorder. 

Visit went ok. Kalen is 3’6 and 38 lbs. His neuro also suspects Kalen has ADHD, based on his recent behavior and latest test results. She referred me to the case worker to get psych services to confirm or not confirm the new diagnosis. I love her because she said she is neuro and will only work on neuro, while letting Kalen’s other doctors work in their specialized areas. Dr. D also said Kalen may be on Risperidone if the diagnosis is confirmed. If the diagnosis is confirmed, Kalen and Brad will have three diagnoses in common. Brad has Autism, ADHD, and creatine deficiency disorder. 

For reference, Kalen's diagnoses are (official and suspected):

• Global Development Delays
• Static Encephalopathy (breath holding spells)
• Autism
• Sensory Processing Disorder
• Sleep Apnea
• Creatine Deficiency Disorder
• Seizures
• Suspected Long QT Syndrome
• Suspected ADHD

We left the doctor and walked to the bank (across the street, a few feet away). I needed to get Kalen something to eat and get a few bucks to wash a few loads of clothes. After we got our food, we caught the train, then walked over to the bus stop to head home. Kalen also had an in-home speech evaluation around 1 p.m. The evaluator called yesterday. I figured why have Kalen miss two days out of school when he can miss just one, so I scheduled the appointment for yesterday.

The homeless man, who won’t leave me alone

I get to the bus stop, sit down, and start eating my food. We had a 10-minute wait before the bus arrived. A homeless man was walking around the bus stop asking people for money. I gave him a dollar and Kalen’s fries (Had a bigger box of fries with my food, Kalen could eat). Kalen picky about what he eats so no one was touching the other fries except me and him.

The man still stood a few feet away, staring at my baby eat. I went on alert. I may be short, but I am a blogger. I have a few hidden safety devices on my person at all times.  I had ordered Kalen a kid’s meal (he already finished the nuggets before we got on the train) and I got the chicken fries combo and a Hershey pie. A few minutes later, the man appears again to ask for more money. Told him, I gave him all I had to give (not touching my laundry money). He walked away and started asking other people for money. He showed back up a few times asking again. By this time, the food was mostly gone except my pie and he asked for the last half. I gave him the last half to keep from going postal. 

This made Kalen cry, but I know next time.  I am still going to get Kalen something to eat, but we are not eating it until we get home.   I don’t mind helping the homeless but this man kept violating my personal space.

Heading Home

I finally headed home. When I got off the bus, I was struggling with a sleeping baby, stroller, and three bags. I ended up breaking the lock on the stroller and Kalen had to walk part of the way home. Luckily, I live across the street from the bus stop. I got to the house, where Brad’s aide was waiting. (I still am not processing why he needs to arrive early at my house over an hour before my son gets home). The time was around 1:20 and the therapist was supposed to arrive in 10 minutes. I started straightening out my living room.

Kalen had poured out some baking soda the night before. I had started sweeping and mopping before we headed out to the appointment, but didn’t finish. I had to put the rug, table, and a chair or two in place. The aide was annoying me to death. A few days before, I moved Kalen’s bed frame into the living room. I am trying to declutter my house and Kalen’s bed was moved temporarily out the bedroom. I also had to replace a screw, but couldn’t find the right size screw for his bed. After I moved the bed, my shorter counterpart, kept knocking over the frame, and a few more screws fell out. I may either buy more screws or buy him a sturdier bed. No more plastic leg and frame beds since Kalen is more destructive lately.

While I was cleaning, the aide kept telling Kalen about how I fixed his bed for him to sleep in. (He also kept asking what was the white stuff on the floor. I said baking soda. I am not repeating myself). I kept repeating the bed is not fixed and I need to get more screws. The aide kept saying I have the screws to fix it and I had to tell him to stop it because I had a long day and he was not helping. If you are going to be on the clock, do some damn work, instead of standing around. I had been up since 5 am and I am tired. I also don’t know when the therapist was going to knock on the door. The therapist finally shown up and the aide walked outside. Hallelujah.

The visit with the therapist

I know the form she was using since Brad has speech therapy from the same company. Kalen barely participated and was more interested in the therapist’s toy collection, she brought. The therapist changed focus from Kalen to asking me questions about Kalen to see if he needs in-home speech. Since I got to the house after 1 and she got to the house after 1:30, time moved quick and it was time to go get Brad off the bus. The therapist continued to ask questions while we walked to the bus stop. It did not help the aide was trying to answer questions about Kalen. Ummm why? Can you name all seven official diagnoses? Do you know his medical history? Do you know his growth milestones, Ms. L was asking about?

Stop talking and let me focus on the questions. We walked back to the house slowly so I can answer the questions. The aide kept talking about we need to move faster because of Brad. If Brad is calm, leave him be. I change my speed as needed but I needed to focus on the evaluation.

Then Mental Health Called for Brad

 Brad was approved for a mental health waiver a few weeks ago. The waiver focuses on in-home services. I admit, I was tired so when they called, I thought the company was his dentist, scheduling a follow-up. Mental health wanted Brad to come in for a four-hour appointment. I told them, they would have to break it up into smaller sessions because Brad does not sit still too long and may have some behavioral issues with a long appointment. I also may not be home before Kalen gets out of school, depending on when Medicaid transportation comes back to pick us up and how many other passengers, will be picked up and dropped off before we get home.

The coordinator was helpful and agreed to do part of the assessment in-home. I also can come in, without Brad to do the financial assessment. We finally got in the apartment and the aide left. (yay). Today was not the day to do absolutely nothing useful. The speech therapist finished up the evaluation and suggested Kalen was in the two-year old range for speech. I agreed because Kalen’s mental age is also 2 to 3 years old. His functional age is a tad higher though. I fixed the kids something to eat and went to my bed to relax. I know I still was tired because Kalen tore up a few magazines and it did not phase me until 2 something this morning (as I am writing this blog post). 

Everyone went to sleep early, starting with Brad. I did not know I had took a nap until I woke up and checked the clock.

I got up, found my phone, hand-washed Brad some pants for school, and tossed them in the dryer (Thank you Jesus for blogging). I had washed Brad some pants a few days ago, but my mind is still gone and don’t want to take chances I can’t find them when it’s time to get him ready for school at 5 something a.m.

I have a lot of work to do Thursday morning. I need to finish sweeping, mopping, and straightening out the living room. I need to do some laundry. I also want to get a few blog reviews completed. Of course, I need a little sleep as soon as those two get on their individual busses. I think I need myself an aide (useful and willing to work hopefully). Today, March 28th,  was a long, long, day.