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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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A moment to never forget

2-24-1Ok…I’ve mentioned it before, but truthfully, before Peanut, I was always very uncomfortable around special needs people. Well…sometimes even scared. Today Peanut had therapy at our local Center for Exceptional Children. She was walking down the hall and blocking everyone’s path. This young man was trying to pass by. He was about 18 or 19 and he was special needs. I couldn’t tell you what his disability was, but I can tell you he had a massive smile watching Peanut go. We moved her to the side and his mom went past first. He stopped and held out his hand for me to shake. I smiled and shook his hand, he then raised my hand and kissed the back of it. No words, nothing else. Just another smile and he walked away. Now let me ask you, why in the world was I ever uncomfortable around people like that?!  Yes, special needs individuals are different. But they are different the most amazing ways!!  So full of love, compassion and strength.  Worth so much more respect than the world gives them.

This young man probably won’t remember me.  He probably didn’t even think what he did was a big deal. But I promise I will hold on to that moment.  He made an impact on my life quicker than most people I even have conversations with.  If I didn’t just stop and look at him, and not his disability, I would have missed this opportunity. 63def18c4d59a139e6804055810bff8e

Next time your out, if you do run into a special needs individual, just say hi!  Don’t ignore them or shy away because you are unsure of what to do.  Open your heart to the possibility of something amazing!  I know you wont regret it!!

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On the Move

2-10-2Last time I gave a therapy update, Jana was still struggling to stand on her own and just started taking a few steps.  What a difference a few months makes!!  Jana officially can stand on her own and pull up on just about everything.  She officially started climbing up steps and making my days even more interesting.  She can walk pretty decent amount with just holding my hands or using her walker given to her by her physical therapist.  This girl is on the move and nothing is getting in her way!!  It is so amazing to see her working so hard to reach her goals.  In the past week alone, I’ve seen a huge change in her confidence and strength.  She is constantly freaking us out by climbing on furniture and getting herself in tight spots.

I found this online:

The average age to begin walking in a child with down syndrome is 25 months (with a range of 14-42 months), versus a child without down syndrome, where the average age is 13 months with a normal range of 9-17 months.

2-8-1So Jana is actually above the curve from her DS buddies in walking, and just a little behind her typical friends.  I am so so proud of her!!  At times it is still tough.  To watch her try so hard but still not be able to do it.  I can see her little brain telling her tiny body what to do, but it still not working.  There are times she gets very frustrated and just tries to give up.  But she is stubborn and independent, so not much stops her from reaching her goals.  (Even as I type this she is trying to figure out how to climb onto the couch so she can take my computer away 🙂 )

I don’t see her having to use the walker for long.  But if she does, that will be perfectly fine.  She is proud of the steps she can take unassisted and it helps bring more independence in her life.  I know when people see it with her, it confuses them.  I mean really, the walker screams SPECIAL NEEDS CHILD!!  But you know what, when I see her beautiful face light up when she can move on her own, I don’t care what anyone thinks!  My girl is perfect just the way she is!  And if people are uncomfortable with that, then thats just too bad 😉

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Dear Birth Mama

1-28Dear Birth Mama

I want to first and foremost say thank you.  Thank you for giving your sweet baby life, and trusting in God to find her a home.  We will never meet, we will never share stories, but I promise you, you will always have a special place in my family.  Because of you, today we celebrate the one year anniversary of our Jana’s adoption day.  The day that officially changed her name from Baby Girl…to Jana Lynn.  You were not there to witness this event, but I can tell you, it was a day full of love and excitement.  Your baby girl is cherished more than I can ever explain.  Not just by the 5 of us, but by everyone she meets.  She is a beautiful, strong, loving, intelligent girl and I am so honored to be able to watch her grow.

1-28-1I wish there was a way to share my thanks with you.  So many people are confused at how a mother can walk away from her baby.  I try to explain I don’t believe that is what you did.  I want to believe that you were scared, but that you loved this tiny beautiful girl enough to put her needs before your own.  I cannot imagine the pain you must have experienced while making this decision.  I pray for you.  I pray that you somehow know that Jana is OK.  That you have been blessed for the blessing you have given us.  I pray your heart has healed from this amazing sacrifice you’ve made.

Today I just want to tell you that Jana is doing amazing.  She is growing and developing more and more each day.  She is strong-willed and determined and has not let this disability dictate her life.  I can see already that this girl is going to do amazing things in the future!  You would be so proud of who she is, I know because I truly am!

Again, thank you…(that phrase is just too small for the gift you have given us isn’t it?! ) We are forever grateful for your love and sacrifice and I promise I will strive every day to be the mama Jana deserves.

We are all eternally grateful for your special gift.

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Meeting up with our ENT

img_8150Ok so we met with our ENT this past Friday.  He examined Jana and set up a plan.  Basically because her sleep isn’t horrible (even thought most times I feel like it is!) he wants to hold off on surgery if possible.  He prescribed Flonase for us to use for the next 6 weeks.  He is hoping that it will help open up her airways a little to help out her sleep.  He was slightly concerned about some water in her left ear.  She does have a cold right now, so he is hoping it is just that.  When we go back, if there is still water we will have to consider putting tubes in her ears as well.  Also, he needs to wait to see what our cardiologist has to say in case she needs surgery on her heart as well.  If everything goes as planned, she will have her tonsils and adenoids out this summer.  That I can handle.  Adding tubes in her ears and heart surgery….that brings me nightmares!  So please pray that everything goes smoothly!!

On another note, we are excited to share with you that Jana has finally started standing up on her own!!  So far shes pulled up on our TV stand and last night I caught this on her video monitor!  She officially can stand up in her crib!!  Now nothing is out of her reach!!

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Sunday….Funday?

image1Its Sunday morning.  Normally I would be at church, helping my hubby wrangle the kids for children’s church.  Jana would be with us, because we have a theory that each time she in nursery, she gets sick.  It’s probably false, but this girl looks at a hospital and shes sick for days 🙂  So why am I home, sitting on my couch while Jana is overly engrossed by an episode of Princess Elena/Sofia the First crossover (Thank you Disney Jr!).  I’m sick!  I’ve been coughing almost non stop for the past 4 days.  When I start to feel like its going away, it comes back with avenges!  We’ve been praying this doesn’t pass on to her.  So far so good, however she seems to randomly break out in a cough fit just to keep us on our toes.

Overall Jana has been doing pretty good.  I don’t feel like physically a lot has changed.  We are still working diligently to get her to stand on her own.  Once she’s up, she can stand like no ones business.  But getting that momentum up is her struggle.  I’m expecting her to just stand up in the middle of the room one day, holding on to nothing and just look at me like “What’s the big deal?  I’ve always known how to do this, just didn’t want to!”  She also has mastered sitting “criss-cross-apple-sauce” while reading.  She’s always kind of crossed her legs while sitting, but now its intentional in order for her to get closer to what she wants.  Her daddy was very impressed 🙂

We haven’t been having as much struggles with food lately either.  She seemed to just realize food was yummy and now wants everything.  Her morning staple is now 2 Eggo waffles.  Yes, 2 whole waffles!!  She throws a fit if I give her any less.  Unfortunately, she has discovered she can chew much better if she actually uses her 3 front teeth not just attempt to swallow her food whole.  This means, each bite I give her she takes it out and holds it to the front of her mouth to chew.  It takes forever!!!  This morning it took 35 minutes!!  I must be doing something wrong.  Isn’t the same as when your puppy training.  I mean, I’m suppose to let her eat as much as she can in 5 min and then move her bowl to the counter right?  Hmmmm….

Lastly, this coming Friday we have our ENT apt.  Not bad considering our original apt. was set for March 30th.  Helps when the doctor puts in a good word for you!  This will help us determine what steps we need to take with Jana’s sleeping issue.  He might be against surgery right now and we’ll take a different rout.  He might say she needs the surgery ASAP and get it all scheduled.  Both scenarios make me nervous!  She also sees her cardiologist next month for an EKG.  This will make sure the two small holes in her heart are closing properly and that surgery is not needed.  She sees her eye doctor in March, this will determine if glasses are needed yet.  We return to the Down Syndrome Clinic in April for her yearly check up.  And finally, another sleep study is scheduled for June.  Because the wait list is SOOO long for the study, her pulmonologist thought it would be good to get her on the books.  No matter what outcome comes form the ENT, a study will help see if treatment worked.  (Another night hooked up to millions of wires and very little sleep?  Sign me up!!)  She is a very busy girl!

img_8080OH!  One more big day up ahead!  The 28th of this month marks the one year anniversary of her adoption date!!  I’m not considering this her “Gattcha Day” because I feel like June 25th is that.  But it is still a day of celebration!  Planning all of Jana’s things: pancakes, Princess Elena, taking a walk in the stroller, playing some Peek-a-Boo and ending the day with a pile of french fries and Coconut Milk ice cream! (Sounds weird but its lactose free and honestly taste amazing!)  She’ll have a blast 🙂

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Not Just a Picky Eater

jana-1-3When Jana first started eating Gerber solids we were thrilled!  She took to them without any issues or fuss.  She was a huge fan of veggies and would only eat about half the jar of straight fruit.  I was so excited that feeding time seemed to come easy for her.  As she has gotten older she has gotten over eating mushed of up foods.  She sees what we are eating and that’s what she wants.  Which is wonderful!  Now that she has 3 teeth she can actually take pretty decent bites out of things (Including my hand…ouch!).  However, we have noticed she has developed a pretty serious food texture sensitivity.  If she is not comfortable with the way something feels, she instantly spits it out.  This means, most foods, she will not even attempt to try.  Actually, even older foods that I knew she liked (broccoli, pasta, sweet potatoes) she wont give a time of day!  It’s made meal time extremely difficult!  I’ve mentioned before in the past, for the longest time she HAD to have infants oatmeal each morning.  If I changed it up she would throw a fit and refuse to eat anything.  Now, we have moved on from that.  She has added Eggo Waffles to her list of approved breakfast!  Which has helped!  However, now her list of other approved foods has gotten shorter.  So far our go to for sure foods are: french fries, waffles, pancakes, pizza crust, puffs, club crackers, coconut milk ice cream (she’s lactose intolerant) and almost all fresh fruit cut up.  As you can see, there are no veggies, proteins or nutrition in basically all of these!!  As a mama, I am very concerned she is not getting the nutrition she needs on a daily basis.  I am able to still sneak in a jar of Gerber Little Bits foods, but sometimes that ends up in a huge fight.  With most of the food on me, and not in her tummy!

So is this all “normal?”  Yes and No!  A lot of children with DS have some kind of issues with eating.  Most struggle with low muscle tone in their mouths and it is almost impossible for them to chew correctly.  Or they can chew, but struggle swallowing.  Some kids refuse to try anything that is not a liquid form.  Each child is different, and unfortunately I haven’t found much research on Jana’s issues.  She does see a nutritionist when she visits the Down Syndrome Clinic each year, but there is none locally I can consult with.

What can we do?  Keep trying.  Meal times will be dramatic and messy, VERY VERY MESSY!  We are hoping that if we just keep allowing her to try the foods we are eating, some would stick.  We have to try to keep pushing her, but not to the point where she is terrified to try to eat.  Its a very fine line.  It has been very stressful, not only for her but for both mama and daddy!  We know if she just tries, she will love the foods we are giving her.  I’m sure this stage will soon pass…hopefully…and she’ll start us on another battle.  Until then, we are keeping a mop and broom close by for clean up!