Wednesday, May 7, 2014

Special needs clinic

If you are one of the "lucky" ones who even know what "Special needs clinic" is you know how our day went yesterday.

Basically, because our son has soooo many doctors that care for him, they like to get together about every 6 months and evaluate were he is at now and share their goals for his care for the up-coming months.

Some good things about it:
  • It allows a unity of care
  • Everyone is on the same page
  • It gives the doctors a chance to see what the other doctors see, as they all only take care of their one area of expertise
  • We make one trip to the clinic and they come to our room to see us = less trips in and less walking for us
  • They all get to see how he is on the one day, good or bad
  • The final report that we get is an interesting read
  • They all know what the other doctors are looking to accomplish or their concerns 
Some bad things about it:
  • Our day starts very early and ends very late
  • Noelie starts off good and strong but gets very tired as the day goes on
  • They make him "show off" all at one time and sometimes he doesn't want to
  • This time we had to bring our youngest and every toy in the house to keep him occupied  
 There really are more good things than bad things about Special Needs Clinic. I feel so blessed to have this opportunity for our son. I really love how all of his doctors are under the same roof and all want to be on the same page with his care. Having that unity is so important. It makes our lives so much better. It definitely cuts down on the amount of explaining I have to do. They also have access to the hospital records and the therapy people's records that come to our house every week, which is also convenient for us. The all knew about our hospital stay on the 25th, and can weigh in about that. They can look at the therapist weekly notes and see how he is doing on a weekly basis. I know a lot of people out there cannot say the same thing.

So here was a recap of our day, so you get an idea of what to expect if you ever have a clinic like this that you need to go to.

The night before (I stayed up till 10:30pm getting everything ready)
  • Put kids to bed so you have a clear mind to remember everything
  • Get any toys, formula, snacks, braces, equipment and questions rounded up and put by the door
  • Lay out clothes for the family to wear in the morning
  • Shower
  • Go to bed
That morning (check in time for us was 7:45am)
  • Get up at 5am and feed the youngest his bottle
  • Administer coffee through your IV asap (don't waist time drinking it)
  • EAT
  • Get the fam dressed
  • Pack everything into the car
  • Drive to the clinic (we only have a 15 min drive)
  • Check in and settle into your room

Once you are there (This is the run down of our day this time. Next time may be different): 
  • Get vitals, weight and height
  • See PT to look at adjusting kid cart and talk about getting a stander. Show off new skills like picking up blocks, following a light, and turning the head to both sides
  • Show off to a speech therapist their new eating skills (Noelie did REALLY well here)
  • Talk with a nutritionist about how overnight and bolus feeds are going and how to add more water
  • See another PT that measures range of motion and what age your kid is "really" functioning at (I forgot to ask what she thought that was. Guess I wait for the paper packet)
  • See the muscle doctor for Botox injections into the inner thigh and both thumbs to help loosen muscles
  • The Orthopedics people want him in foot splints while standing in the stander, so they take casts of his foot. We have to come back to make sure they fit once they are made
  • A Neurologist comes in to talk about the hospital stay and dealing with seizures
  • Take a lunch break 
  • Meet with the primary doctor for hospital follow up
In case you lost track that was 8 doctors or therapists. Noelie is always bringing joy to everyone he sees, and today was no different. The doctors said he was the star of the day. Everyone was so impressed with his progress and, of course, couldn't believe how big he had gotten and his full head of hair.

Our day at the clinic ended at 4pm! We ran some errands in town and were home by 5pm. The youngest took a nap in the car while we ran errands. Noelie didn't sleep at all, even though he looked like he wanted to. By the time we got home the youngest was wide awake so no nap for mom and dad. :( The only thing I should have done, and didn't, was throw something into a crock pot and turn it on before we left so we had supper ready to eat when we got home.

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