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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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Jana Update

shotsThis has been a busy week!  It was  a week of doctor’s visits.  Poor Jana is worn out from sitting in waiting rooms, traveling 2 hours in the car, and being poked and checked.  Here’s how our week went:

Apt. 1, Monday – Jana had her 6 month check up at her pediatricians office.  She weighs a whopping 13 lbs and is 25 inches long.  She is a tiny thing 🙂  But considering she was 5.6 at birth I say shes growing pretty good!  She is in the 50% for her weight and 75% for her height.  This is based on children with Down Syndrome because for the most part kids with Down’s are usually shorter statures.  Which, if you know me, is perfect because I am only 5″  🙂  Doctor said she looks great and healthy.  So I say it was a good apt.

Monday night….headed up to San Diego to stay the night.  Jana’s next two apt. were at Rady Children’s Hospital.

Apt. 2, Tuesday Morning – Time for Jana’s eye check up!  The Down’s Center Clinic referred her to have her eyes check because for the most part, Down’s children are prone to eye issues.  Most of the time it is caused by the shape of their eyes.  We actually were not very concerned about Jana.  She seems to focus great on everything and loves watching people very intently.  They dilated her eyes (just little drops) and we waited 30 min.  The doctor checked her eyes and determined that she has a very slight astigmatism (so do I and our son Mason!) and partial farsightedness.  However, she said the majority of baby’s are far-sided at this age.  So basically it was a great apt again!  No need for glasses or work done.  They will check her again in 6 months to make sure.

Apt. 3, Tuesday Afternoon – Developmental Assessment.  To complete the adoption process we had to have Jana seen by a Therapist to have an in-depth assessment done.  In the words of our social worker “Its to make sure you know what your getting!”  (Like anything anyone can tell us will make us not want our Jana!)  I have to say, this was not my favorite part of the week.  For about 1 1/2 she played with Jana, asked us questions and did her test.  For the most part Jana scored below average on her development.  Hearing the scores, honestly my mama bear instincts went into full gear!  there were things that she counted Jana down on that I knew she was capable of doing.  Juan told me that I have to remember she hows Down’s and she is going to be delayed.  It honestly wasn’t that I was upset that she was delayed.  It was the fact that I know what my girl is capable of, I know her strengths and weaknesses, and I didn’t like someone telling me she couldn’t do it!  I guess this might be something I’ll have to adjust to.  But no one can tell my kids they can’t accomplish  something! 🙂

Today, Friday Morning – Christmas Party!  Jana had her first Christmas Party at the IVCEC (Imperial Valley Center for Exceptional Children).  She was so excited and looked adorable in her new celebration outfit. (Sorry still cant post pictures of her!)  I was able to meet two moms of Down’s babies.  One 1 1/2 year old boy and one 10 month old girl.  It was great being able to ask them questions about their experiences and just have people totally get what we’ve been going through.  We exchanged numbers so I’m sure Jana will be having some fun play dates soon!!

Lastly, we are still waiting on our Home Study approval.  It still needs to go to a Program Manager to get signed off.  So hopefully next week we will receive our approve and have an option date soon!  We are hoping for January 7th so please keep that date in prayers for us!

 

 

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Vision & Hearing

So tostressday we were planning on being at Rady Children’s Hospital again to have some testing done on Jana.  Unfortunately last week I got a call saying her apt needed to be canceled because they had her Medi-Cal info wrong and therefor couldn’t get the approval done.  So now we need to wait at least another week for the approval then we can finally reschedule the tests.  I am so frustrated with the issues that keep coming up with her having Medi-Cal.  Yes, I’m grateful that she has the coverage, but I feel like we have to jump through hoops just to get things taken care of.  Once she is legally “ours” she will be put on our insurance and hopefully these doctor apt will start to go a little smoothly.  The only positive has been that the staff at Rady’s have been completely awesome at helping us get the apts. that we need.

So what test did Jana need?  She needs to see an Audiologist (hearing) and an Ophthalmologist (vision).  Because children with Down’s are often prone to hearing and vision problems, they will be conducting test to make sure Jana is doing good…or if she isn’t, they will make a plan to make her better.  The fix could be as easy as glasses or hearing aide to invasive surgeries.  Which I am praying deeply that surgery isn’t needed.  I’m not sure I’ll be able to handle my tiny baby girl getting cut open.

As far as her vision is concerned, it seems like she is great!  She makes eye contact with anyone who talks to her, and is always looking around being nosy 🙂  Her hearing however, we’ve been slightly nervous.  There are times where we feel she should respond to noises and she doesn’t, but other times she seems very aware.  I’m not sure if we are just looking into things too much or what.  But I am anxious about that test.

Great news!!  As I was writing this up, the Audiology department called.  Her testing got approved and a new test is scheduled for this coming Friday!!  I’m so glad that they were able to get it all set up for her.  Please pray for us on Friday between 9-11 am.  The apt will take about 2 hours.  The first hour involves us getting her to sleep…the second will be conducting the test.  They will give us results as soon as its over.  I’m sure the whole time I will be a nervous wreck!