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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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Uncomfortable…Part 2

Ok…so first I have to apologize.  When I wrote the blog earlier today I was angry and upset.  It hurt me to see people treating my beautiful girl differently.  After having a long discussion with the big kids and my hubby…I understand the situation more.  I don’t think the library was just full of mean moms today.  I do think Jana made them slightly uncomfortable, but not in the way I took it.  If I look back to before we got Jana, I’m sure there were numerous times I made a mama of a special needs child feel the same as I did today.  Most people are unsure on how to even start up a conversation with a SN mama.  Do they bring up the disability?  Do they try to ignore it?  Ask questions?  Don’t ask questions?  There is always a fear of offending someone.  That’s whats pretty amazing about kids…they will come right out and ask, and then fully accept the answer.  Why do we loose that child like innocence?  I’d love for a mama to ask me questions about DS!  I’d be happy to share all I know and explain what a blessing Peanut has been to us.

Today wasn’t a learning experience for Peanut…it was for me!  I have to gain a tougher skin.  I need to be prepared for Jana to sometimes be the outcast.  I have to be there to smile and brighten her world, when things seem to tear her down.  I need to remember that no everyone is comfortable with difference.

To end your night, I wanted to share this video that was shared on IG.  Its kinda funny…but so true!!

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DS Fun Facts

Day 20 of 21 day challenge….
Some fun facts for today…13862-Don'tMakeMistakes.1200w.tn
DID YOU KNOW?!

* That 1 in 5 children with DS play a musical instrument? For children older than ten, that number doubles. One of five children with DS sing in a choir or vocal group, for children older than ten, it is every one in three… (Jana already knows how to rock her bell toy 🙂 )
* Two out of every three children with DS like to draw and/or paint pictures
* Approx. 9 out of every 10 individuals with DS listened to someone read a book more than three times a week between the ages 2-5 (Every book I read Jana, she is so amazed by the colors and pictures!)
* Approx. 7 out of 10 children w/ DS use total communication (signs, etc) between the ages of 2-5
* Approx. 7 out of 10 kids with DS saw a speech therapist two or more times a week between the ages of 2 and 5
* Approx. 1 of every 3 children with DS older than ten rides a bike without training wheels
* Seven of every ten individuals with DS older than ten participates on an athletic team through Special Olympics
* Two out of every five individuals with DS participates on an integrated athletic team.
* According to their families, 3 out of 5 individuals with DS know how to operate a computer.
* One of every three individuals with DS older than ten w/ DS reads the daily newspaper on his or her own
* Seven of ten individuals with DS older than 10 read books on their own for personal enjoyment (I struggle getting Mason to do that!)
* One of two children with DS go to school in a mainstreamed class. (My prayer!!)
* 3 of 5 children with DS participate in school activities that are open to all students.
* According to their families, 1 of 5 children with DS talk on the phone with friends more than three times a week. For children older than ten, that number doubles. (Juan’s cousin with DS calls my mother-in-law almost every night at 6 on the dot!  Usually without any of his family knowing…lol)
* One of three children with DS write email regularly
* Two of three children with DS over age ten have a boyfriend or girlfriend! (Daddy says after she turns 30)
* Approx. 7 of ten children with DS pray on a regular basis. (Of Course!!)
* According to their families, approx. 7 of 10 individuals with DS imitate characters from a television program or movie
* Approx. 2 of 3 individuals with DS older than 10 prepare their own breakfast each morning.
* Three of four individuals with DS older than 10 make their own bed in the morning.
* One of two individuals with DS (older than 18) work in a non sheltered workplace
* One of five individuals with DS (18 or older) lives on his or her own