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!
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 went 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.