Days 100-105 of 365 Days of Thankfulness

4/18: I am grateful to one of my coworkers.  After listening to me get not great news about Riley's sleep study and she decided that I needed to get out of our office and took me to lunch.

4/19: I am grateful to our ENT's assistant.  She was able to get us on our favorite ENT's schedule quickly without alot of fuss.

4:20: I am thankful for my sisters-in-law and mother-in-law they invited me to go shopping all day and I was able to enjoy myself without worry about everything going on with Riley and her sleep study.

4/21: I am thankful for my husband who does alot of home improvements.  He redid our deck this weekend and it looks wonderful now.

4/22: I am thankful to Riley's pulmonologist for fitting us in for a refit for a new mask for Riley's CPAP machine. 

4/23: I am thankful for the quiet evening I get to spend with Riley.  She amazes me everyday.

Days 92-99 of 365 Days of Thankfulness

4/11: I am grateful for Facebook. Now that might seem weird but I am able to share pictures of Riley so easily with family that don't get I see her much an that is awesome.

4/12: I am grateful that Riley didn't fight too much having all of the equipment for the sleep study put on and slept through the night.

4/13: I am gratefully for my extended family we had a wonderful evening with Kyle's family celebrating my in laws anniversary

4/14: I am grateful for he beautiful weather and Kyle for coming with me to the Cherry Blossom festival so I could take pictures

4/15: I am grateful that I get to have Mondays off of work so I can spend them with Riley

4/16: I am grateful for Kyle who made dinner and cleaned up afterward

4/17: I am grateful for my wonderful friends I can go weeks or even months with someone of ten without talking to them but we are able to talk and pick up conversation like no time has passed

Mastering "In"

Riley has been receiving OT services for 3 years.  And one of the goals that they had been working on with her is to get her to put things "IN."  In December she aged out of the Infant and Toddlers Program (I&T) and started ECI (school) in January.  In her very last session with her I&T OT, that she had for 2 years, she was able to demonstrate "IN."  This was such a thrill for Maureen (the OT) that she got to see her master a skill she had worked so hard to help her with.  Here is best video (and it is not very good) of Riley showing the skill.  She of course stop doing it better when I pulled the camera out.

This video is from 12/17/12:

Riley has now been in school for alittle over three months. And I think we can truly say that she has master the skill of "IN."

This video is from 4/7/12:

What a difference three months can make!!!

Homemade Camera strap

So I am said in previous post that I am obsessed with Pinterest. I am also really getting into photograph for fun.  And I am trying my hand at crafting.  So why not combine all three.

I found a pin to this blog post and I thought "Hey I can do that." So I did.

I did my a bit differently then the post said because I use a hand strap.  That is similar to the pictures below.

  

So I wanted to be able to easily clip on a shoulder strap when I needed it and be able to remove it quickly as  well.  So instead of just attaching it via rings in the original post I added clips.

So here is what you are going to need:

2 heavy duty jewelry clasps

2 small rings

2 large rings

Needle nose pliers

1 Scarf/belt/Fabric cut to length you desire, about 30inches

      Remember to include about 1-2 inches of extra fabric on either end for sewing

 

 
 I had a short scarf that was my Grandmother.  I never wore it so I decided to re-purpose for this.

First I needed to remove the fringe. This was simply looped into the main body of the scarf so I was able to do this without cutting to avoid the scarf coming undone.

 This left me with a single string at the end which I just cut off.

Here it is with one side done and one not.

Then I threaded the large ring on the end of the scarf and folded over the end.  I tried to make sure that the scarf would lay as flat as possible.  Then I did a simple straight stitch using my sewing machine.  I made sure to go over the ends several times to lock the ring in.

After the large ring was in place I used the needle nose pliers to open the smaller ring open so it could be thread into the clasp and onto the large ring

After I had them in place I used the pliers to close the small ring back together. Be sure to make sure that you close the rings tightly and that they don't open with the weight of you camera.  I strapped mine on then stood over my couch and check to make sure it would hold before I went out with it.  That way if ti didn't my camera would only land on the couch and the concrete.

Your strap can now be clipped to the slots on your camera.  It make it even easier to clip on and off I added small rings to the slots on my camera.  Now I don't even have to remove my hand strap to put on my solder strap.

Update on Project New Me

Project New Me is going pretty well. I had been down 12 lbs, but I had a back slide at Easter. My family came in and I did not pay attention to what I was eating and I put 6 lbs back on. That was really discouraging, especially because it was completely my fault. But I buckled down with my diet and started exercising and I drop 5 lbs since Easter. So that brings my total weight loss to 11 lbs. Which means that I get to mark another goal off my list. YEAH ME!!

I am the worst self motivator, so I am trying some new things to help myself succeed. I have added an alarm to my phone to reminder to exercise everyday. I have added a second alarm to try to get myself to go to bed at a decent time. And I still have my signs around my house.

Starting weight: 185 lbs

Current weight: 174 lbs

Goal weight: 145 lbs

So here are my goals:

1. Drop 5 lbs

2. Work out every day even if it only for 10 minutes (Number of days in a row of working out: 1)

3. Drop 10 lbs

4. Follow my diet

5. Drop 15 lbs

6. Don't cheat, ie no candy

7. Drop 20 lbs

8. Drop 25 lbs

9. Drop 30 lbs

10. Drop 35 lbs

11. Drop 40 lbs

Wow

I am amazed by how many views my post from early today has got.  Since I posted it early this morning my blog has had over 250 views.  That is amazing, I have never had that many views in one day.

Day 91 of 365 Days of Thankfulness

4/10:  Today I am grateful that my parents taught me to stand up for myself and the people that I love.

Medical history brochure

When Riley came home from the NICU, we came home with a very long list of doctors, 8 diagnosis, and 7 surgery dates to keep track of.  I was not sure how I was going to keep it all straight. We went for a follow up with Riley's pulmonologist and we were talking about trying to keep everything straight.  The doctor mentioned that one of her other patient's mom had created a brochure that they updated as needed. 

I thought that this was a brilliant idea so I went home and jumped on word template and found a trifold brochure.  I added pictures of Riley, all of her doctor' names and phone numbers, a brief history of her, all her diagnosis, surgeries (including dates), medication, pulled information from the Chromosome 18 website about Tetrasomy 18p.  I pulled this information most people don't know about Tetrasomy 18p.  Here is a copy of the template for the trifold brochure with information about Tetrasomy 18p.

As Riley got old and her history got longer, we got more doctors, added more services, and surgeries.  And the trifold brochure was not big enough for us any more.  So I went back in word template and end up finding a Christmas newsletter template that I convert into a 3 page brochure.  This allowed me to add milestones Riley had meet, a longer history, more details about her oxygen requirements, vision, hearing, and sleep study results.  Here is the link for the 3 page brochure with information about Tetrasomy 18p.

All of Riley's doctors love this brochure.  I update it as need.  I add new pictures.  It is great when we meet with a new doctor since her chart is so huge they can quickly look over the brochure and get a better idea about her.  It also has the link for the Chromosome 18 website so they can educate themselves about her too.  It has come in handy in an emergency too.  When you are panicked it hard to remember the last surgery or if her kidney reflux is on the left or right side.  This way you can just hand a copy to the paramedics or ER doctor.

I keep two or three in Riley's diaper bag. I also gave a copy to Riley's teacher when she started school.

This brochure is great for kids with lots of medical needs.  It is also great for when you are taking care of parent and there is more than one person handling the care.  It is an easy way to keep everyone on the same page.

Not so fun way to spend a Friday night...

I was looking forward to spending a quiet Friday evening with Riley as so she decided not to take a nap for my mom. Instead I spent the evening riding in an ambulance and in the ER.

Riley has become a climbing, crawling machine. Which is awesome but comes with it own challenges. She is not very coordinated so she falls down a lot and when she pulls herself up on to things she will just let go and go falling backwards.

On Friday the 22nd she was crawling around on the floor while we were watching Sprout and she decided that she wanted to get closer to the TV. We have a TV cabinet that has door was glass windows on the front.

She has been climbing up it for weeks she will be in her knees in front of it and put her hands up on the glass. I have been nervous that she is going to put her hands through the glass, lucky that has not happened. However that night she was wearing velour type pants and as she climbed up her knees slipped out from underneath of her and down she went. She has done this before but unfortunately this time her head caught the corner. I ran over and picked her up she started crying.  I went and got or booboo bunny out the freezer and a binky.  We went and sat on the couch.  She was not a big fan of the ice pack, but I able to get in on for a short period of time.  She did end up calming down, unfortantely it was right around bedtime but after a fall like that I did not want to just put her down.  So we relaxed on the couch for about 15 minutes playing on the iPad and watching Sprout.  After that she seemed to be fine and started to crawl around on the couch not wanting her to fall off the couch and hit her head again I put her on the ground to play.  She started coughing, but it was not a normal cough so I was keeping a close watch in her to make sure her coloring stayed ok. 

She pulled her self up to stand make to the couch and had another cough episode expect this one ended with her vomiting a little onto the couch. I jumped up and sat her down as she threw up again.  As I got her shirt off her she threw up a third time. I had called my mom to let her know that I was going to take her to the ER.  My mom told me to just call 911.  After getting the ambulance on the way I took her upstairs and put her in the empty tub in case she got sick again.  I tried to get in touch with Kyle but of course he was in the middle of a call and didn't answer.

She sounded a bit like she was having breathing issues so I grabbed her oxygen tank but she would not let me out the nasal cannula on her. The paramedics had arrived.  Of course by now Riley is acting more like her normally self, but I still wanted to have her check out since she was vomiting and she hit her head on the same side as her shunt.

I am been calm up until the paramedics got there and I had to explain what happened.  That is when I felt like i was having a panic attack.  The wonderful paramedic kept me calm and helped me gather everything that I needed to get out the door.  They even locked my front door for me.  As we are loading into the ambulance Kyle called me back.  I told him what was going on and that he should come home.

We check into the ER and were seen relative quickly.  My parent came down and Kyle rushed home from work.  Riley was acting pretty normal at this point and had not vomited again.  The doctors order a CT scan.  These are always fun with her.  She has to sit still to get a good picture and she hates laying on that table.  So she ends up wrapped up like a burrito with my hold her head still.  It is a workout in and of it self.  The tech tells me that it should be read 20 minutes and they they read them remotely.  Which is nice for the radiologist.

It is then the waiting game for the CT to read, that was the longest 20 minutes I have ever been through.  Mostly because it was actually like 45 minutes before they told us that the scan was clean.

They discharge us home, but tells us that we need to wake her up every 2 HOURS.  Grrr!  It was a long night.

Days 71-90 of 365 Days of Thankfulness

3/21: I am grateful that our dog, who is a 85lbs Rottweiler is so awesome with Riley.  She climbs all over that poor dog and Ella just takes it or moves away when she has had enough. 

3/22: I am grateful to the paramedic that kept me calm and in control while trying to get Riley ready to go in the ambulance.  See this post to why we where in the ambulance.

3/23: I am thankful to the Disney store in White Marsh that were able to hold a Peter Pan costume for me for my cousin.  I have been looking for one since Christmas and he is going to be so excited for it when he comes to visit this weekend.

3/24: I thankful for my understanding friends.  Riley and I were suppose to go to a birthday party at the bounce house but since she had been in the hospital on Friday.  I decided that it was not a great idea and my friend totally understood that I had to cancel at the last minute.

3/25: I am grateful that my job has some flexiblity when it goes to working from home.  We only have one car that is good in the snow and today we got a spring snow storm, so hubby was able to take the safe car and I was able to work from home and not have to take leave.

3/26: I am grateful for my mom, she washed my floors today.

3/27: I am thankful to my husband for helping get our house in order for my family visiting.

3/28: I am thankful for my wonderful hairdresser.  He always makes me feel like a million bucks

3/29: I am grateful for my wonderful family.  We had a wonderful day at the train museum.

3/30: I am thankful both sides of my family are so awesome.  My parents had a big Easter celebration and both my dad's and mom's families where there. It was so much fun.

3/31: I am grateful that Riley is so good in church.

4/1: I am grateful to have a extra day off from work.  We had a great weekend but it was very tiring.

4/2: I am grateful for my cousin Lauren, because today was her birthday.

4/3: I am grateful that my Godson Ian is doing so well after being in a feeding program for 8 weeks.

4/4: I am grateful that I had friends that had wonderful senses of humor.  I posted a really old picture from the 80s and take several of my old friends and they all had awesomely funny comments about it.

4/5: I am grateful that the weather is starting to get nicer outside and our neighborhood is starting to come alive again.  When I came home from work today I found Kyle and Riley out at the park with

4/6:  I am grateful for my cousin Harrison.  He turned 2 today.

4/7: I am grateful that I have another day off before I have to go back to work.

4/8: I am grateful for the beautiful weather that we are having today.  i actually slept with the windows open in my bedroom last night

4/9:  I am thankful for one of my coworkers.  She is a wonderful photographer and knows that I am trying to teach myself.  She lent me a book all about composition of a great picture.  I can't wait to read it.