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Bye Bye Walker!

IMG_0936Yesterday Peanut said good-bye to the walker our Physical Therapist gave her about a year ago.  We walked into therapy with it, walked out without it!  No…this doesn’t mean she is walking on her own now!  But we transitioned to another “walker”  Even though she walked like a pro in her walker, our goal with Peanut has always been to move her into something that is more of a toy (baby stroller, cart, wagon) instead of the medical walker.  This will give her more independence as well as not draw huge arrows to her to show everyone that shes “different.”

Last week, while hanging out at our friends house, we had Peanut try out her daughters shopping cart.  I was worried it was going to be too tall or even tip a little and then she would be scared to try it again.  But nope!  It was perfect!!  She voluntarily pulled herself up on it and took a few steps.  Instantly we knew we needed one of our own!!

So we purchased the Melissa and Doug Shopping Cart  It is a little more pricey than we would normally pay for a toy.  However, it is super sturdy, wont tip and realistically because of her size, Peanut can use this for years!

I took it with us to Physical Therapy to show Betty and she loved it!!  She is even planning on purchasing one for her to use there.  Since this has been the only thing Peanut has ever walked with on her own, it is worth transitioning her to it full time.  So now my job kicks in!  We are helping her use the cart as much as possible.  Planning on taking it with us wherever we can and encouraging her to be more independent with it.

I was so proud that she has made this progress!!  I feel like we have been pushing her for this for forever!  This past month she has really found her strength.  There’s no way to determine how long she will still need assistance to walk, but she is heading in the right direction.  Part of me is terrified of her fully independent and running around everywhere!  She’s hard to keep controlled as it is 🙂

So be on the look out for us at the store if your a local.  You might just catch Peanut shopping on her own 🙂

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Don’t Judge

summerspecial6Recently Peanut had a cancer scare.  We didn’t share this info with very many people, because we were praying it wasn’t a very big deal.  After attending the Down Syndrome clinic this past May, one of the specialist wanted to run blood work.  Remember I mentioned they tested her for Celiac Disease?  Well that came back clear and normal, however at the time her thyroid hormone levels were very low.  This could mean something simple as hypothyroidism, where medication is helpful.  To something more extreme as thyroid cancer.  Our doctor wanted to run testing again to make sure that Jana just wasn’t fighting an infection at the time.

We waited two weeks to re-take the test, and then another week to get the results back.  To tell you our stress level was through the roof is an understatement.  We were so terrified of the possibility of cancer.  I broke down completely instantly when I pictured my beautiful girl going through treatment, loosing her hair, having to fight non stop.  I’ve witness other families go through the same thing.  My heart as always broke for them.  Suddenly we were facing our biggest fear.  Thank the Lord, all the test came back clear!  They are going to be testing her again in 6 months to insure, but as of right now she is healthy!

So what is the point of sharing this?  During this very stressful time, I gained some clarity.  Already we have had people look at our lives and somehow pity us.  They see the stress, the doctors appointments, the sleepless lights and think we somehow regret bringing Jana home.  During this cancer scare I thought “Would you go back and change it?”  My answer was no.  I feel like God brought Jana to us.  He had a plan and purpose for her being in our lives.  And even if my time with her is cut short, even if the worst happens, having her is still worth it!  We would never even consider going back and telling our social worker no.  Jana has brought so much joy and happiness into our lives and honestly, we wouldn’t change anything about who she is or the experiences we’ve had.  summerspeical4

Life can change in an instant.  None of us are guaranteed another day.  I know as Jana gets older even more scary events will come our way.  This coming August we have to hand her over to a surgeon for her tonsillectomy/adnoid removal.  My point is, don’t judge a family by the struggles they are facing.  See past the pain and see the determination, the love and the faith that is getting them through it.

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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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It’s been awhile

IMG_0001I know…I’ve totally failed at keeping this blog up and active.  Like I’ve mentioned before, I try to write when it comes natural.  However, sometimes that happens when I am completely busy, or it just doesn’t happen.  But I did have some time today and had a few things on my mind.

First of all, for those of you who don’t follow our Instagram (I try to post daily updates of Peanut there) Peanut is still not walking on her own 😦  She is doing great at using her walker or even holding someones hands to walk, but the desire to do it alone just isn’t there.  We are currently still seeing Betty, our physical therapist, only twice a month.  This is all because physically, there is no reason for Peanut to not walk.  She doesn’t have the determination to do it yet.  So that means, a lot of pushing at home is what needs to happen.  We try to make her walk as much as possible and it seems to sometimes be working.  She can now at least push her walker on her own and actually gets mad at us for helping her 🙂

IMG_0011We have a few important doctor’s visits up ahead.  This coming Tuesday she will go to the Down Syndrome clinic.  This is where  she’ll see 7 different specialist in about 4 hours.  Its a super busy and long morning, but we get so much out of it!  A few concerns we have right now: the fact that she still is not getting any OT therapy and that she has recently started throwing up quite often.  Sometimes its when she drinks a lot of water, others its just random.  We’re not sure if its an allergy or a digestive issue.  So that is one big thing we plan on bringing up.  Later this month she also sees her ENT again.  This should be the apt that we schedule her tonsillectomy and adenoid removal surgeries.  Praying this surgery helps her sleep better!!

Ok, so here is something that has really affected us as a couple since Jana has entered our lives.  We now have 4 kids, so I know getting baby sitters in general are difficult for that.  However, I know that isn’t the only issue.  We’ve had people (usually grandparents) watch them for short periods, and I have had a total of 4 nights away from her. (three was because we had out of town youth trips)  Why is this?  Because no one wants to watch her overnight!  Yes, she has sleeping issues, and she has a routine that helps to stick to as close as possible.  But these things are not because she is a difficult child, they are because of the Down Syndrome.  So far my MIL is the only one who has stayed overnight.  The problem is, she will only watch them here in our home to make it easier on Jana.  Which I totally get and appreciate, but that means in order for Juan and I to have any nights alone, we have to get a hotel.  Well, now on a youth pastors salary, that doesn’t seem very responsible most times.  So we stay home.  We make a point to try to connect with small coffee dates, but sometimes that just isn’t enough.  It’s definitely put a strain on our marriage.  Let me take a moment, I am in NO way complaining that our friends and family don’t help.  Often times they offer and we turn them down.  Because honestly, sometimes its just easier to keep her routine then change things up.  I’m also not blaming Peanut for any of this.  This baby sitting thing is just something I’ve felt has been very different than with the other kids.  I think sometimes Juan and I are overprotective of her (Juan more so than me lol) and maybe that makes others nervous about watching her.  It’s just hard because I don’t see her as any different than the big kids, but in reality, she is!  Down Syndrome has affected everything about her, good and bad.  So no matter what, she will always be treated slightly different than other kids.  No matter how much we don’t want that to happen, it just will.  Have any of you other DS mama’s struggled with getting sitters??

IMG_9961I don’t know, it kinda just seems like I’m rambling here a bit, and if I am, I’m sorry!  Sometimes it still feels like we are alone in all of this, I desperately wish the support group in our area was active!

BTW…Peanut’s 2nd birthday is this coming Monday the 22nd!!  We are so excited, but unfortunately celebrating is put on hold a little.  We are currently in the process of moving…again!  We are hoping to take a family trip soon to celebrate not only her day, but big sister Jaylen’s 11th bday that was on the 12th.  May is a crazy month for us!!

 

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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!!