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ARD meeting update.

So yesterday midday was the ARD meeting.  I left and I cried.  Not because I was upset or sad but because I was relieved it was over.  The stress and worrying about it is gone for now.  I made a video and was going to post that but decided against it.  No one wants to see my crying anyways.  Then I was going to come home and post but I needed to process. 

So sorry for the long wait, I promise I am not trying to be dramatic or annoying by making you wait til today.  I had to take the time to separate my feelings from those that were projected on me by others.

So rewind, a few weeks ago I heard “thru the grapevine” that the school was recommending that E NOT go into the PPCD classroom but instead come once a week for speech.  (Once a child turns three they age out of ECI and transition into the school system.  Sometimes going into the PPCD classroom.)

When I heard that I wasn’t really shocked.  Ephraim showed off at his eval, I even told his therapists that I highly doubted him getting anything from them.  I was curious though if it was “allowed”, he has Down Syndrome you don’t outgrow it so wouldn’t that automatically get him in??  The short answer is no.  LOL

So while waiting for the ARD meeting to come I got the time to speak with alot of different people.  Friends who work in the field, his therapists, etc etc.  Some fell on the side of what the school was saying, some where in the middle and unsure, and some were against it and felt he needed to be in the PPCD room.  All the while, B and I were just kind of undecided and not sure what route was the “right” way. 

So anyways, I went to the meeting yesterday and his OT from ECI also came with me to hear what they had to say.  I trust her opinion b/c she worked in the school district before and she knows my child. 

E scored really well on the eval, he did not score low enough to gain the Intellectual Disabled label.  That label would have gotten him in.  The area he scored low was speech.  So he does have the Speech Impairment label on his file.   

They told me what they were thinking (no PPCD and just speech), I let them know I have worked super hard the last two and half years and did NOT want the ball dropped just b/c he is doing well now.  Are the certain he does NOT need PPCD??  The actual teacher for that class was in the meeting as well and she told me that the kids that are currently in the class are below E’s abilities and most are non-verbal.  Since E’s biggest concern is speech it’s not the best idea to stick him in a room with non-verbal kids.  They were also worried about what behaviors he might learn. 

For his speech time he will be with one other child who is verbal and would be a good peer model for him. 

So I left feeling ok and that they weren’t BS’ing me.  Am I worried that I made the wrong choice??  No, not right now.  I can always call another meeting and we can discuss any concerns I have.  I will be watching him and the speech teacher will be as well. 

Now the question is….do I want to try and get him into HeadStart?  While we don’t meet the qualifications financially, they do have space for kids with special needs.  OR do I want to wait until next year and send him to MDO for two days a week like I am doing with Caleb now. 

So yeah, that’s it.   While I know everyone may not agree with what we decided, B and I are on the same page.  Next year at our annual meeting I will discuss the option of having him in pre-k at the school with PPCD support.   

Growing up!

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My boy has blown me away this past week. First he did so awesome with his doc appt and then yesterday with his haircut!

His hair has been bothering me, I want it longer but it was looking shaggy. So I tried talking to him like I did on Monday. I asked him if he would sit like a big boy and let Ms Sandi cut his hair, told him it wouldn’t hurt, etc. He said yes! So off we went to git er dun!

He sat in the chair ALL BY HIS SELF. That alone is a huge deal. Normally I have to hold him and I get covered in hair bc he hates the capes. He still screams and fights and its just not fun.

Anyways, he sat in the chair WITH a cape and let her do it. He started fussing at the end when she got close to his ears but it was a HUGE improvement from our past experiences.

I’m loving that E is growing up and I can talk with him about what’s going to happen. It really seems to help him.


Heart update and a request for prayer.

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So this past Monday was Ephraim’s check up with the heart doctor.  I dread doctor appointments.  E usually does NOT do well at all and it’s just stressful, I forget to ask the q’s I want to b/c he’s flipping out, and I leave in pain (my back, he’s a strong lil dude).  I asked for prayer and thoughts on my FB page and on a forum I am on, those prayers were answered.  Ephraim behave SO well.  It was like a different kid. 

Monday morning I started talking to him while I was getting him dressed.  I explained that we were going to doctor, they were NOT going to hurt him, they would put stickers on him, etc etc.  When we got there and I had to get his shirt off I reminded him, remember you’re getting stickers on now.  I think talking to him in advance plus good ol Blue’s Clues helped.  He stood on the scale and got measured like a pro.  My tiny lil boy is still only 30 lbs.  He didn’t allow them to do his blood pressure but they said it wasn’t a big deal.  He fussed a bit when they first started with the EKG stickers but calmed down quickly, no ripping them off or the hookups.  He sat in my lap and watched Blue.  Of course the machine started acting up so he had to sit there longer but he was calm.  It was a miracle!  He was calm when Dr Q came in and started fussing with him as well.  Then the big test, would he sit well for the echo.  At first he wasn’t too keen on it, so he ended up in my lap again watching Blue while they got it done.  People, that may not seem like a big deal to you but this is the kid who has to usually be sedated for this test.  I am so thrilled that he’s growing up and able to understand that it’s ok and it won’t hurt.  I HATE HATE HATE having to drug my kid to get a test done.   Hoping that this is the new trend and that we can get things done without major intervention from now on. 

So the verdict- He STILL has a small leak, where they left a stitch out.  “Normally” tissue grows over and closes it within 3-6 months.  Not for my kid, he doesn’t ever do anything the easy way or by the book.  So yeah, it’s still there but not a big deal at all.  It won’t limit him or restrict him in any way.  We go back in 18 months to see again.  Praying one day it will be gone and we will be done with the heart doc. 

Now to switch gears for a bit, E will be turning three this month and that means he ages out of ECI and into the school district.  He had his eval and showed off.  Proud of my little guy but it hurts us when it comes to getting services (how messed up right??).  Anyways, our meeting for his IEP/ARD (whatever they are calling it now) is Feb 21st.  Could you please pray/send your thoughts/whatever you do my way?  I hate not knowing what to do.  I have been hearing some things about what they have decided for E.  I have been trying to get ahold of someone to get a copy of the eval.  I am not sure what the right choice is.  I hate that I am stuck making choices that effect E’s life.  I know as a parent I do that everyday but usually it’s not an outright/in my face choice, just day to day life.  I want to do what’s best for E.  I told one friend that I wish I had someone that could just make up my mind for me and I just go along with it.  I get tired of thinking for 5 people all the time.  Anyways, thank you in advance.  I am grateful to everyone who has our back.  Everyone’s support means so much to me and I don’t know how I got so lucky to be surrounded by such awesome people (near and far). 

Until next time….

What is this!?!

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Another post!  It’s a miracle. 

First I want to say thank you to everyone who reached out  to me when I had my mini breakdown last week.  I really appreciate it.  :)

So I figured I would do a little catch up post to let you all know what’s been going on the last few months.  Glad I have my whole life in my planner or else you wouldn’t be getting an update.  If I didn’t eat the same thing for breakfast every morning, I wouldn’t be able to tell you what I had yesterday.  LOL

In Aug, I enrolled Caleb into Wee School.  He has loved it and is doing very well.  A bummer, Natalie was not able to be in Girl Scouts this year.  Her troop broke up and they have no room in any other troops for her.  :(  She has been SO bummed.  Bruce was going to take over as leader but honestly, he is so busy (and I am too) that we just couldn’t. 

In Sept, Ephraim had a sedated ABR.  He didn’t cooperate with the first two tests. (yes, TWO).  They tried a reg old ABR, where they give an oral sedative but it didn’t knock him out.  SO frustrating, this kid can’t do anything the easy way.  So in Sept we had to go the IV and gas route.  That day was something else.  Not the worst day we’ve ever had, but still.  He was SO hungry and his test wasn’t until 12:30.  They wanted us at the hospital early (like 10am) and in the first waiting room this annoying little girl kept coming over with her bag of cereal and crunching right in E’s face.   He was watching Blue’s Clues on my Fire and she was trying to see as well.  Finally we got done with what was needed on that floor of the hospital that we could go up to the waiting room with all the other kids having procedures done, so NO eating or drinking happening.  Instead E kept throwing fits, like major ones.  Good times.  Good times.  He didn’t want to go with the nurse when it was time to go back, so I carried him in.  I. FELT. AWFUL.   We hit the room where the test was happening (picture small OR looking room) and E LOST HIS MIND.  He started screaming and clawing his way over my shoulder trying to get the heck out of there.  His face was heartbreaking, he looked so terrified.  I started crying.  The nurse held him down on the table and they gave him some gas and told me to tell him see ya later.  So hard to walk away.  :(   He was crying and screaming “mama” and I had to leave.  I’m getting teary just remembering it.  The test came back perfectly normal.  Here’s hoping next year he will cooperate and be able to sit and take the normal test with the earbuds. 

Oct- we had the DSAH Gathering of friends.  We had a great time, as always.  The kids love going every year.  That same Sunday was Natalie’s birthday!  We had a campfire and snacks with friends.  She loved it.  It was low-key so I loved it too. 
We also had a lot of fun celebrating fall in Oct.  A friend of ours had an awesome fall party.  It was a super fun time and the kids LOVED it.  The kids were supposed to dress up, but Caleb is a party pooper.  He doesn’t like costumes for some reason.  So instead I found him a shirt at Target that said “This tee shirt is my costume”.  The kids also had fun at a Trunk or Treat and a fall festival at our church. 

In Nov, I ran my first 5k.  I did it with a friend and we had a blast.  The race gave me such a high and made me want to do more races.  Have I run since then……no.  LOL  I wish I had a crowd cheering me on when I run around my neighborhood but I don’t.   I haven’t decided if I am going to get back to running or not.  Still mulling it over.   
Also in Nov was the Breaking Dawn 2 premiere!!!!  I went with a crew of friends and we had fun sitting in the theater waiting until midnight, laughing like crazy. 
OOO and we also celebrated our first Vegan Turkey day.  ;)  It was delish and I had alot of fun cooking everything. 

Dec- Caleb and Natalie both had Christmas programs.  Natalie joined the choir and they got to go on a field trip to sign for a few different places. 
Ephraim had another eye doctor appointment with a new doctor.  Guess what!?!  No glasses needed.  Wish I would have known that before I dropped $170 for a pair of glasses.  Whomp whomp, but at least I am not having the daily fight to keep them on his face. 
Christmas came and went TOO fast.  The kids loved all their gifts and were pleased.  One stinky thing, the power was out from 9ish in the morning until 6-7pm.  Thankfully it was a nice day so we didn’t sweat or freeze to death.  We didn’t get to cook our big meal, but I did cook it the next day. 

Jan- E had his arena eval with the school district, since he is about to turn three.  He did awesome and totally showed off for them.  I started with Zumba classes and I am loving it.  Didn’t think I would but I’m hooked now. 

Coming up in Feb-  Check up with the heart doctor on Monday.  ARD meeting for E.  Prayers for both would be much appreciated.  :)  Also Ephraim’s THIRD birthday.  Can you believe it??? 

Pity Party for One

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My first blog in ages and you get me whining. 

I just need to vent.  I’m tired.  The last three years have just worn me down.  My life is not hard in comparison to many, but it’s just tiring.  I know I am lucky when it comes to E.  Other than his heart we haven’t had any major health issues.  He can feed himself, he is independent like any other two year old, etc, etc, etc.  I see the good, I do.  That’s why I feel so bad when I want to complain.  I mostly just keep it to myself and suck it up.  Everyone has issues/problems/struggles.  I try to focus on others and not myself.  It’s hard!  I’d rather wallow in self pity for a day.  ;)

Anyways lately I have just become so uncomfortable??  I don’t like that my life revolves around a three year old’s schedule.   I know when you become a parent your wants/needs/whatever comes second to your child.  I get that.  Sometimes I wonder what I was thinking…I am selfish!  It’s hard for me to put myself second(third, fourth, fifth) when I just want to do what I want to do.  I dislike SO much that I can’t just go and do, I have to stop and look at my planner and make sure I’m not forgetting anything.  Today I got sad b/c I couldn’t find a dentist appt that would work with my already full calendar.  I have a stinking hole in my tooth and I can’t find the time to go get it fixed. (sn*- this is devastating to me.  I have ALWAYS had great teeth, where the dentist and assistants would compliment me. *toot toot*   Now I have a hole!  NOT cool.  Like I said…heartbroken about this*) 

Most of the time it’s not even a doc appt for me (b/c I never go), it’s wanting to go to a store/go to lunch with a friend/something else frivolous and not important. 

Bad mom here but I keep counting down the days until it will get easier and my days will be more open.  (How long until E is in school???)  I know I am not supposed to wish away my days and time, but here I am doing it.

Anyways, that’s my little whine.  I just needed to get it out.  No comments or replies necessary.  If anything you can pray for me.  ;)  (over here crying while typing this all out.  UGH when did I become such a baby)

Happy Heart One Year Anniversary.

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August 10th, was the one year anniversary of E’s open heart surgery.  What’s crazy is that the last half of July and the beginning of Aug, I was having the hardest time sleeping.  Now that we are past the tenth, I am sleeping just fine again. Wonder if my brain/body was reliving last year??  

I really can’t believe that it has been a year.  In some ways it seems like another lifetime and in other ways like it was just yesterday.  Ephraim is thriving and gaining weight and doing well.  There is still a small leak which annoys the tar out of me.  I was told that usually by 6 months post op, the tissue grows to cover the small leak.  Of course, E never does anything by the books so his hasn’t done that yet.  I wouldn’t expect anything less from him.  ;)  The heart  doctor isn’t worried about it, so I am trying not to ponder on it.  I really don’t want him to ever have surgery again like that.  I do wonder if he will have limitations when he is older with activities and such though.  

I said it on Facebook but want to post it here as well.  THANK YOU!  to everyone who prayed for us, sent their thoughts/vibes, sent money, babysat, made us meals, and held us up during that time.  I am still so grateful and count myself as very blessed to be surrounded by such wonderful people.  :)

On the 10th, we had a movie night at our house with some friends.  I made cupcakes to celebrate E.  The kids had so much fun playing with their friend’s and of course they thought it was super cool that their friends were over so late and watching a movie with them.  

We do not go back to the cardiologist until Feb.  If you think about E, send a prayer up that this last little leak would close.  Thanks so much again for all the support! :)

Also if you just stumbled upon my blog and want to read more about his surgery check out this tab-

The Phantom Sleeper

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Ephraim refuses to take naps.  If I lay him in his crib, he will talk/yell the whole time.  The longest I have left him in there….almost two hours.  I was REALLY wanting him to take a nap before we needed to leave that afternoon.  Did not work.  I put him in the car and I swear as soon as I hit the end of the driveway, he was out.  REALLY!?!  I hate car naps.  They aren’t long enough and E wakes up like a bear.  In his napping days, the boy would sleep 3-4 hours.  I miss that so much.  LOL  It was a nice break in my day.  

Since E will not nap willingly, he randomly passes out around the house.  Sometimes it’s his brother’s bed.  He goes in there to play and zzzzzz.  Once it was the hallway.  Another time the middle of the living room floor.  Most often, the dining room table.  I have posted video’s of E sleep eating on facebook.  The boy is crazy.  He also favor’s the couch as a good napping spot.  I never know when it will happen, could be 9am or 4pm.  He will be making noise playing/eating/reading and then all of a sudden silence.  One afternoon he was looking at a book and then I hear a smack.  Face first into the book, dead asleep.  It’s crazy.

Here are some pictures of the Phantom Sleeper.







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