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Down Syndrome Center

First of all, I was planning on posting this on Wednesday, but we just moved and my laptop was placed in a random box.  Thought it was lost forever, we finally found it last night!  Anyways…

This past Tuesday Jana had another trip to the Down Syndrome Center.  This is the awesome center she has visited twice before.  We are there for about 4 hours, but we see 6 different specialist.  Its one of our favorite visits because we get so much accomplished!  We started with seeing the Occupational and Physical therapist.  First of all, they were very happy with Jana’s progress.  They feel she is making great improvements and they gave us some tips and exercises to help move the walking progress along.  Also, they submitted a referral for Jana to receive Occupational Therapy there in San Diego.  It means that we will have to take the 2 hour trip every two weeks or so for her to receive the service, but it is not offered in our area and  I know it will benefit her.

The dentist was happy with her teeth and found out she has 10 teeth now!  We haven’t been able to count good because she bits us each time we are close lol.  They want us to schedule an appointment at the dental clinic at the hospital.  Nothing to worry about, just starting her on a healthy check up plan.

We were able to see the Speech therapist.  She was happy with Jana’s progress but knew there was more that could be done.  Our local regional center doesn’t feel a speech evaluation should be done before the age of 3.  The specialist at Rady’s did not agree!  So a referral was put in for her to be fully evaluated as well as be put into a special play group/speech program.  Yup that means another 2 hour trip at least twice a month for this service.  I’m hoping somehow magically they can be on the same day, but even if they aren’t she is worth it!     IMG_0078

Next on to Nutrition!  For the past year I’ve been bringing up the point that she hasn’t gained much weight.  She has been pretty consistently around the 18.6-19.2 lbs range.  Obviously that doesn’t seem right.  Finally someone agreed with me!  The nutritionist was worried that maybe her body is not digesting her food properly therefore she is loosing nutrition.  This would explain the throwing up often as well as the horribly stinky diapers (seriously!)  So she want’s Jana to see a GI Specialist to see what they suggest.  From there possible testing will be done such as x-ray or even a biopsy of her lower intestines.  She also gave us some pointers on some Lactose free products to try to help raise her calcium intake.

Finally we ended our trip with the Pediatric Specialist.  This was a new young doctor who recently took over the Pediatric Down Syndrome Department.  She was amazing and Jana just loved her!  We received a referral for her to possibly start taking Jana to a pediatrician in San Diego.  That way they will have access to all her hospital visits and updates.  And truthfully, she would receive overall better care.  (Yup, means possibly more 2 hour trips!)  She agreed with the nutritionist and felt Jana would benefit from seeing a GI specialist.  She also wanted to run blood work to check her normal hemoglobin count as well as rule out possible Celiac disease.  This would be a gluten allergy and could explain the low body weight.  So after we finished with the clinic we IMG_0083went right over to have her blood work done.  I have to say, my girl is MUCH stronger than me.  I am such a chicken with needles, yes even after 3 births, a spinal tap and a tattoo, needles freak me out!  But my girl took it like a champ.  She watch everything the nurse was doing and even held her arm still.  While sitting in Daddy’s lap (I wasn’t about to force her to do that!) she didn’t even whimper!  The nurse was impressed 🙂

So the next day the Pediatrician called us to inform us that Jana is clear of Celiac disease!  They are having us run more blood work when we go up this coming Wednesday for her ENT apt.  This is to hopefully rule our more things. 

So I’d say this was a very successful trip to the Down Syndrome Clinic.  It was a long day but truthful we got so much taken care of it was all worth it.  It is easy to complain about the possible trips we will be adding to San Diego.  The cost of gas, the time to travel, the re-arranging our schedule.  It’s very easy to see that all as a negative.  But I know there are a lot of mamas who wish they had the option to take those trips.  They have missing parts in their hearts from the little ones who were taken too soon.  This past year our DS community has lost a handful of beautiful babies and I need to remember to be grateful for all the annoying appointments, the long car rides, the countless phone calls and arguments to get her services.  All of it is because Jana is here!  She is mine and she is worth all of it!  None of us are guaranteed another day and I need to remember plenty of mamas would take my place if they could.  This past week especially I have tried to truly cherish my time with Jana.  With all our babies actually!  Life is so precious and things we least expect can come our way.  So, do me a favor, if you reading this and you have children at home, stop and make sure you hug them a little longer than normal.  Kiss their sweet faces and make sure you savor their smell.  Cherish every moment you have.  We are all so blessed to have the chance to continue to do these simple acts.

 

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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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7 Specialist in 4 Hours

Rady Children'sOn August 11th Jana had her first apt at the Down’s Syndrome Center located at the San Diego Rady Children’s Hospital.  This center was established by the DS Action Organization.  The center’s purpose is to connect families with specialized medical care and create a team to oversee the growth and development of Down’s children.

We arrived at the Center at 8:30 am and took a seat.  The clinic works on a first come first serve schedule so the earlier you arrive the better!  We weren’t sure what to expect but we were pretty excited.  As we were waiting, families started arriving.  Soon the waiting area filled with toddlers running around, singing songs and just being happy kids.  Not aware to anyone that just because they had Down’s it meant they were different.  I was almost in tears as I was watching these kids.  In a few years that would be my Jana.  Happy and without a care in the world.  Going to the doctor like nothing because shes would have already been there countless times.  It didn’t make me sad for her.  Seeing these kids run and play just made us picture her.  Yes she has Down’s, and yes she will struggle.  But she will play, grow and develop to be a beautiful little girl.  Her path will be slightly different, but seeing these other kids, helped me see she will get where she needs 🙂

Anyway, I got off track! 

The Clinic!  We started off by meeting with a social worker to make sure we understood the process and be aware of any services Jana might qualify for.  She let us know that we would be moving from room to room to meet with different specialist who would over see Jana’s growth.  It will be something we will do in another 6 months and then at least once a year till she is 5.  We saw a Developmental Behavioral Pediatrician, an Occupational Therapist, a Physical Therapist, a Dentist and a Genetic Counselor.  We were also suppose to see a Speech Therapist but she had a family emergency.  We figured that was OK since Jana was well 2 months old at the time 🙂 We were so impressed by the team.  These people were each specialist in their field who will later meet up all together and discuss each case and create a plan.  If we were to try to meet with all of them on our own it would be close to impossible.  We were there for a total of 4 hours but it didn’t feel like we were just waiting and waiting.  It was actually fun 🙂

Time to brag a little 🙂  Each specialist was pleasantly surprise and impressed by Jana’s awareness and strength.  See, a large amount of Down’s babies have what they call “noodle syndrome” where basically they have very low muscle tone which affects their moment and coordination.  Some also have a difficult time focusing on the person in front of them, eating a bottle or simply crying to show their discomfort.  Jana thankfully has not shown any signs of these development issues.  She loves to hold her head up and look around, she enjoys tummy time and is determined to learn to craw soon!  She looks each person right in the eye and tries to figure out what exactly what is going on.  She notifies us (often VERY loudly) when its time to eat and she doesn’t have any issues so far taking her bottle.  We don’t know when or if we will see the development delay caused by Down’s.  But we do know right now we have a VERY healthy, strong and stubborn little girl who will not allow you to tell her she can’t do something!

If you know of anyone with a Down’s child in the Southern CA area, here is a link to the clinic for more info.   Down Syndrome Center