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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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Heart Warrior

When Jana was born she had two defects in her heart.  One PDA (In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. Before birth, the two major arteries—the aorta and the pulmonary (PULL-mun-ary) artery—are connected by a blood vessel called the ductus arteriosus. This vessel is an essential part of fetal blood circulation)  The second was a ASD (A “hole” in the wall that separates the top two chambers of the heart.  This defect allows oxygen-rich blood to leak into the oxygen-poor blood chambers in the heart. ASD is a defect in the septum between the heart’s two upper chambers (atria). The septum is a wall that separates the heart’s left and right sides.)   Last year she had a full ECHO and EKG done to monitor these defects because surgery was not needed at birth.img_8755

Yesterday we had to do the ECHO and EKG once again…

First of all, whoever thinks getting a toddler to lay still for over an hour to do the ECHO is CRAZY!!!  Seriously, I can’t keep this child still for anything!  Except…yesterday 🙂  We had to leave our house at 5:30 am in order to take the 2 hour drive to Rady Children’s Hospital.  This meant, Jana got taken out of bed, and put straight in her car seat.  She stayed asleep till about 6:30…normally she is up around 8:00.  So that right there messed her whole schedule up.  We arrived with her favorite move (HOME) downloaded on our IPad, as well as a few episodes of her favorite show (Kazoops!)  We img_8750got checked in and they put the monitors on her chest and tummy.  Then, asked us to keep her still for the duration of the test!  For the most part she did stay img_8747still…even fell asleep for about 30 min!!  It was probably the most I’ve snuggled with her in a long time!  But around the 50 min mark, not just Jana, but mama and daddy were fed up and ready to move around!  Luckily they were able to view her heart as well as main arteries in her neck and lower chest area.  How she did it, I img_8757have no idea!!

It was now 10:00, and time for the EKG.  This LUCKILY is a very quick procedure and she is allowed to at least sit up.  They hooked her up to what img_8756seemed like a hundred wires and the test itself took about 2 min!  Our girl was going strong.  She hadn’t thrown a single fit and was still being her adorable self.

Finally it was time to see our Cardiologist.  The last time Jana saw him, she was smitten 🙂  We’ve said he is her favorite doctor because he is the only one img_8751she has ever flirted with.  Unfortunately, by the time she got to see her McDreamy , she was sound asleep 😦  But that just meant, mama and daddy could talk to him a little less interrupted.

img_8758 So what did the test show?  Well, her PDA has completely fixed itself.  That means, that is no longer an issue and can now be left alone.  Then came the pause…..  Her ASD is currently open about 6mm, that means it is letting blood flow into the right side of her heart.  Meaning, the right side is slightly larger than the left.  If left untreated, this can cause serious health issues.  So a surgical procedure will be done next summer to fix this issue.  They will be going through her main artery in her leg and hopefully be able to fix it without fully cutting her open.  He feels waiting one year will help her vessels grow a little.  Currently they are roughly the size of her pinky, and the instruments he needs to use are just about the same size.  Obviously that is an issue!

So this summer she will have a tonsillectomy and adenoidectomy then next summer her heart surgery.  Which means, I have a full year to stress and freak about my daughter having heart surgery!!  Ugh!!  I am honestly trying to stay positive about it.  Our situation could be much much worse!  We are very grateful for our babies health but it does not make surgery any easier.  It is scary, it is stressful, but it is needed!  Our girl is a warrior and I have no doubt she will amaze all of us during these surgeries.  I trust that God’s had is watching over her, giving her the best doctor’s for the job, and will see her through it all.  I just need His help a little more to deal with the extra worries.       

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My nightmare

 *Writers warning:  I apologize in advance for misspelling or bad grammar. I’m going on very little sleep and a whole lot of stress!!* 

Yesterday I had a doctors apt in San Deigo. We almost didn’t bring Jana but she woke up seeming great. No fever, little coughing…we were happy 😊. During my apt we noticed her breathing seemed a little odd…by the time we got her in the car she seemed to have a fever. We talked it over and figured Children’s was right here. She wasn’t getting any better and they had already seen her for all her specialist. 

When they got her in her tempature was 104 degrees. She was struggling to breath through the coughing and slightly dehydrated. After x-rays, they noticed she had the beginning stages of phenomena. She needed to be admitted at least overnight. 

She needed an IV. I knew it would sucks…but I wasn’t prepared for this. Due to her dehydration it made it close to impossible for them to do it. After 4 tries…Yes 4 times of them poking her…her screaming at the top of her lungs…they got it. It probably killed the nurses as much as it did us to hear her. They were so upset they had to do that. I knew she absolutely needed it.   But how do you explain that to a 7 month old??

That was bad…but not the worst thing. Her nose is so congested they had to suction her nose out with a machine.  They do it twice. Once just a frontal nose suction. Almost like using a NoseFrida. The second part is actually sticking a small tube down each nostril and her throat. I am telling you, I’ve never heard any of my kids cry like that!  It was so heartbreaking to hear. It helped so much…but so hard to watch. They’ve done that twice now. 

She was up last night till around 2:30 screaming. We couldn’t do anything to calm her down. As soon as she would start to drift off she would struggle to breath and scream again. It was torture. I couldn’t snuggle with her because she couldn’t breath right. She could roll like she normally does because of the IV on her arm. She couldn’t really suck anything so that meant no bottle, no binkie, no hands.  Finally the nurse wrapped her up super tight and caused her to stop fighting. She struggled for another 30 min then crashed. She’s woken up about 4 times since then. But almost immediately fell back asleep. 

She’s struggling.  Juan is struggling. I’m barely holding on. This has been the hardest thing I’ve faced. Being with Jaylen during her  Anaphylaxic shock, her appendectomy…stitches for both boys. Nothing has compared to watching our tiny baby scream and freak out.  I would do anything to remove this from her. To switch places, to have her back to her beautiful happy self. 

Doctors are thinking it will be another night or two. She needs to be able to be off oxygen, not needing her nose suctioned and eating regularly for 8-12 hours. When all three are cleared we are home.  

I know I’ve asked you to pray for our family in the past…but now we desperately need it. Please pray that Jana keeps fighting this and gets better. That the doctors and nurses that are caring for her are doing everything they need. Pray for Juan and I as we get very little sleep and have to watch this all helplessly. We want our Jana back and healthy. I can’t wait to hear her adorable belly laughs and watch her attempt to crawl. To snuggle her in my arms as she slowly drifts to sleep.