Down’s Clinic

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Hotels are so much fun!

If you remember back when Jana was 2 months old, we had our first visit to the Down’s Center at the Children’s Hospital.  (Read about it here: 7 Specialist in 4 Hours)  Well yesterday Jana had her second visit to the clinic.  So once again, she saw 7 different specialist in about 4 hours 🙂

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In the waiting room

We started with the social worker to make sure Jana was receiving all the services she is qualified for.  We then saw a dentist.  This I was actually looking forward to!  Jana has been popping her jaw for the past 2 months.  She leans against us, either on our chest or arms and literally pops her jaw.  I always worry she is going to hurt herself but it doesn’t seem to bother her.  The dentist was surprised about this.  She said it is actually very rare 🙂  She checked Jana’s jaw and even saw her do it.  She didn’t feel that there was any concern and thinks maybe Jana is just exploring her mouth.  Since Jana is still pretty young, there isn’t much yet for her to do.  When she turns 1 year (in 3 months!!) they want us to take her in and from there they will do x-rays and check her alignment.  Until then, we just have to monitor it and try to not let her do it.

Next we saw a speech therapist.  This was actually our first time ever meeting with one.  I’ve had concerns because Jana isn’t really trying to talk yet.  She yells, growls and grunts at people, but no “Mama” or “Dada” yet.  Of course, people keep asking me “Shes not talking yet?!”  Making me feel like she is way behind.  Thankfully she isn’t!!  Even with typical children words usually don’t start till around 10-11 months.  So she is right where she needs to be!  She did inform us however, that because of the respiratory issues Jana has, there might be times where she has slight hearing loss.  If she is very congested and having build up in her nose, most likely she will develop water in her ears.  This is because unlike typical children who’s ear canals are slightly slanted, children with Down’s are straighter, therefore they cannot always drain correctly.  She recommended we speak to the pediatrician about a ENT referral.

We visited with a Physical Therapist, Occupational Specialist and a Nutritionist.  All who said Jana was doing great and to keep up with what we are working on at home 🙂

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Waiting to see the Doctor

Lastly we were able to see two Pediatricians who specialize in Special Needs children.  They both recommended Jana be seen by an Ear Nose and Throat doctor as well.  First because of the infections she has been getting, and secondly to start monitoring her.  As she gets older, she has a higher need for surgery or special care.  We see them on April 15th.  Lastly, they put in orders for blood work.  They want to monitor her Thyroid and check for anemia.  Children with Down’s are often more prone to anemia and are also at a higher risk for leukemia.  When Jana had blood work done back in August, her thyroid numbers were slightly low.  Not low enough for any concern, they just want to monitor it and make sure they are still in average range.

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The paper was a hit!

This coming Friday we head back up to Rady’s to see the Cardiologist.  This is to go over her testing she’s had done in the past and to make sure her heart murmur is closing.  We also need to speak to him about her blood circulation.  We’ve noticed at times her legs turn slightly discolored and she gets what they call marbling.  This usually happens when shes sleeping or being held in one spot for a while.  The pediatrician didn’t seem to be concerned about it.  He said some kids do have a circulation issue, however it is nothing that needs to be seriously addressed.  We are hoping the cardiologist will help put us at ease as well.

Jana definitely has a busy schedule!  Next week she will redo the Baer Test and her vision will be checked the beginning of June.  Lots of doctor visits…lots of questions answered.  Praying all these test come back clear and she is healthy as can be!

 

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