Friday, May 30, 2014
When Hailey started Kindergarten she didn't know her ABC's (except for H) and she couldn't count pass 6. She did know her colors and most of her shapes, but she wasn't where she was suppose to be. As long as she was having fun at school I wasn't too worried about what she would be expected to learn. Did you know that kids are suppose to be able to read a clock in Kindergarten?! I didn't learn that in Kindergarten... Her doctors told us, she wouldn't be able to learn her ABC's let alone be able to even speak. Even some people in the school district suggested that Hailey be put in a medical type environment rather then a public school one. Hailey is forever proving people wrong. Not that they were doubting her, but they looked at textbooks instead of looking at Hailey.
This was Hailey on her first day of Kindergarten 2013
She was very excited to get back to school and especially to take the bus.
For the most part this school year was great. I owe the principal a HUGE thank you for everything she did for us. Every time I had a concern she would listen and do her best to help. Hailey's school worked with me on all of Hailey's needs, from feeds to medications. Hailey's school nurse had NEVER had a child that had a g-tube and Hailey was her first. I am sure Hailey has made an impression on the nurse to last for a while.
We hopefully have dealt with the issues concerning Hailey and her being given a 1 on 1 aide. I guess when school starts up again we will see how that ends up. I had blogged earlier on how we ended up having to hire an advocate. I hope they have finally listened to our concerns.
I had a lot of fun being in the classroom and sharing arts and crafts with all the kids. Hailey has made lots of new friends and really loves her teacher. By January Hailey had learned 1/2 of her ABC's and now upon completion of Kindergarten Hailey knows ALL her ABC's! That is an incredible accomplishment. Hailey has great reading comprehension skills. We are going to put Hailey in a General Education setting for 30 minutes a day for reading. It might be asking a lot, but I won't know what Hailey can do until we challenge her. If it ends up being too much we can always put her back in the special needs class.
Hailey loves going to Library, Art, and Music and most of the time enjoyed getting PT, OT and Speech at school. ;0)
Hailey has done such a great job in school and we couldn't be more proud of everything she has accomplished and all the friends she has made!!
Congratulations on Graduating Kindergarten Hailey!!! We LOVE you!!
It is a wish of mine that in 12 years I get to blog again that Hailey is graduating High School!!
Thursday, May 29, 2014
Wednesday, May 21, 2014
Since discovering that Hailey has a second degree heart block she now needs to see her cardiologist every 6 months. "Luckily" we had an appointment to see the rehab doctor and we could kill 2 birds with 1 stone and make 1 weekend out of it. Friday we drove up to Utah and Hailey needed to have a holter monitor placed. Hailey was NOT happy about this. Hailey first had to have an EKG done and that was the easy part. Once the cardiologist reviewed it and spoke with us the holter was placed and needed to stay on for 24 hours. This is Hailey's sad face right before the tears came. Anna was a good sport and also wore the stickies.
They have yet to discover an adhesive for the holter monitor for children with sensitive skin. Hailey did very well for the 24 hours with minimal complaints. We had told her that the next day after we take the monitor off we'd take her swimming. That made her happy.
We were told by the cardiologist that the heart block has progressed and will most likely continue to do so. The longest heart block (pause in beats) was 1.5 seconds. Once they become longer at 3 seconds and more frequent Hailey will need a pace maker placed. Hailey is old enough now that they would be able to place the pace maker through her chest instead of through her leg. I guess if I was looking for a bright side that was suppose to be it? The Dr. wants us to look for paleness, flushed skin, or if Hailey faints or passes out, that will be an indicator that progression is happening. The Dr. said there are no medications just keep her happy. I told her that's all we've ever been told and that's what we do.
The next day was the weekend and our appointment for rehab wasn't until Monday. We had lots of time to kill and not very much to fill it with. When we got Hailey ready to swim she was SO giddy. We are so glad she was given reusable swim diapers to be able to get to go swimming. Thanks June for the great gift!!
Hailey would have spent ALL day out there but after 2 hours you could tell she was fatigued. It was time for medication and a feed and I would have bet she would have fallen asleep, but she didn't. She was awake until it was time for bed and boy did she sleep!
Sunday was a very quiet day and we really didn't do much. We did some sight seeing and we did another couple hours in the pool. Pool ='s Happy Hailey
Monday was our Rehab appointment and we had to check out at 11 am when our appointment was at 4 pm. We tried going to the children's museum, but it was closed. We ended up at Hailey's ALL time favorite store: Learning Express! We have one in Vegas that Hailey frequents when she goes to the mall with her dad. This store was 10x's the size and there were DEMO toys everywhere!
After that we still had a lot of time to kill and it was suggested to us to try a Family Fun Center that was near by. It was a great idea and not TOO expensive. You could play games where you won tickets and almost each game was 1 token. We spent $10 and got 44 tokens. I think you get at least 1 ticket even if you played. When Hailey won and tickets shot out you would have thought she won the lottery. Hailey's hands were in the air and she'd shout, "I won!!!"
There was one game she wanted to play that she needed help with. You put your coin in and have to hold down a catapult and shoot it in a hole with different amounts of tickets you could win. She asked for help and I told her that mommy's not very good. She told me to "try it, it's nice." I gave it a whirl and we won 100 tickets in 1 try! I told her she was my good luck charm.
We spent about an hour at the family fun center and "earned" 400 tickets! Hailey enjoyed turning them in and getting lots of trinkets in exchange.
After the family fun center we went to lunch and walked around a bit before heading to the appointment. Once we were in the Dr. office and the Dr. looked at Hailey she noticed that Hailey has become stronger, but still needs to work on those quads. She also talked to us about Hailey's AFO's. We have had nothing but problems getting the prothetic center to give Hailey the correct AFO's. Once again we find out what he gave us was incorrect and after a year and every single pair being wrong the Dr. suggested that we see the Physical Therapist in St. George and have him take over the AFO's. Another appointment in another state because once again Las Vegas doesn't have what we need for Hailey. It's very disappointing to hear that, but we don't have a choice. Add on another trip which adds on more time away from home, extra gas money, and hotel money. I am hoping we finally get what Hailey needs but I have a feeling something is not going to end up going well in the whose going to pay for this department. It's just one of those gut feelings.
Other then that the trip went very well. We spent time as a family, we swam, we did fun things and then when we go back I want to have something SUPER fun planned that Hailey doesn't know about yet. I'll give you a hint...
It'll be a bit of money, but I have some new necklaces that are coming up to be available in our Etsy shop and June fundraising commission from DoTerra will go towards this event. I don't want to tell Hailey until it's set in stone, but I'm going to try VERY hard to make this happen!
Well...until next time, Thanks Utah it was fun!
Friday, May 16, 2014
On Hailey's Amazon Wish List I came across an item that looked extremely interesting to me. Ever since Hailey received her much needed new walker she has repeatedly asked me, "why it's NOT pink?" Trust me, if it came in Pink I would have asked for a pink one, but it did not. There is an item available for such a request. It's called SHRINKins. With this item you are able to decorate your device. It can be a Wheelchair, a walker, crutches, or even a cane!! They are easy to add, temporary, and sanitizable.
We were thrilled when we received this for Hailey's birthday. I was more excited to get this placed then anyone.
First you start off with your NOT pink device. In our case it was Hailey's walker.
Get everything you will need ready. The box with the wrap also comes with tape. I also needed my scissors and a hair blow dryer and I was ready to go!
I measured what I needed, wrapped it around the metal. Placed the tape, and heated it until it shrink wrapped itself onto the walker!
I got the hang of this very fast and I looked for every bare spot that I could wrap!
Everything was looking great! I even finished up by doing the seat last. I wanted to make sure I had everything as covered as I could get. In the end I did need to use 2 packs to get this walker complete. Online it said I should have only needed 1, but that wasn't my case!
And abracadabra....IT'S DONE and it's PERFECT!!
Hailey came home and asked me where I bought the new walker. I told her that her friends and family on Facebook sent this to her for her birthday!! I have one happy girl with a pretty semi-pink walker.
Thank you to the Lies and Crossman family for purchasing this for Hailey! It's an amazing item that I'm glad to be able to share with others! I know more kids will have smiles on their faces soon!
Thursday, May 15, 2014
**CAUTION** This post is picture HEAVY!!!
When Hailey finally decided what kind of birthday party she wanted we got into full party mode here. A special thanks to Believing in Bryleigh and Lexi Jayne Designs for helping us with all the paper decorations and invitations!!
The invitations could not have been cuter! Thank you Tiffany!
The banner was the perfect size!
I did get some party hats and plates and napkins with Doc McStuffins on it to spruce up our table, which was the center piece to the party. Hailey loves a party hat!
There are TONS of ideas on Pinterest for a Doc Party! I loved all the ideas posted that I pretty much duplicated everything I saw! I couldn't help myself!
I set everything up the night before when Hailey went to sleep. There would be no time in the morning to do so. We were up early and out of the house for Horse Therapy at Spirit.
Who doesn't LOVE polka dots!?
I took some of Hailey's 60ml Syringes and filled them with Colored M&Ms that Hailey's Grandma Dinah gave us. It helps make those big syringes not so scary and every kid wanted one!
I also filled these little test tubes with candy and m&m's.
Our centerpieces were made from glass bowl, jelly beans and floral foam from the dollar store and of course Dum Dums. EASY!
Tiffany at Lexi Jayne also made these great cupcake toppers! PERFECT!!
I saw this idea and knew I HAD to do it. I took empty push pop containers and filled them with cotton candy and called it "Extra Fluff" After all, if you are a doctor for stuffed toys you are going to need extra fluff for your patients.
An apple a day keeps the Doc away! An easy way to incorporate fruits for the kids!
Water just looks more fun with water bottle wraps from Lexi Jayne!
I stayed up late melting chocolates for candy molds in the shape of bandaids for your ouchies! You will probably also need some "cotton balls" or marshmallows! Ours were EXTRA big...
You can't have a party without cake! Read about our cake story HERE!!
I set up an activity table for the kids that were coming. Everything was set up and ready to go when the kids arrived. We had all of Hailey's favorite things, coloring, band-aids, stickers, and arts and crafts!
Hailey was having a blast with all her friends!
This was my version of the Big Book of Boo Boos. I got the note books and crayons also at the dollar store!
Hailey's dad ALWAYS gets on me for my take home goodie bags. He does NOT think I should make goodie bags for the kids since they didn't do that when he was growing up it didn't make sense to him, but I did it any way!!
The girls took home their own Dr.s bag filled with Doc toys and stickers. It was ADORABLE!! I ordered these online at a half price party supply website!
These are some Tootsie pops and some Lambie lollipops. Hailey's favorite!
I even set up a photo booth for pictures. By Photo Booth I mean that I put this on the wall and I took pictures of the kiddos that came! LOL!
Our sweet Hailey could not stay still long enough to even look at he camera for a birthday picture...
I loved that the kids enjoyed the table, just in case I also put on a Doc McStuffins movie.
I also had make your own necklace craft going on. Can't miss out on an opportunity for some OT!
So instead of each kid taking a turn to whack at this beautiful piñata this was a pull string piñata. Great for kids with special needs and for toddlers!
Each child takes turns pulling their string until the lucky person with the "magic" ribbon pulls and the bottom falls out and candy spills! It was great and no injuries!
Time for cake! I can't even count how many times we've sang Happy Birthday to Hailey that week. I think once with every meal and she LOVED it!
Time for PRESENTS!!
Thank you again to everyone who sent a gift off of Hailey's Amazon Wish list, or mailed a gift! We appreciate your generousity SO much!! We are grateful for your friendship! Hailey enjoyed everything!
Before Hailey's party I had wondered what Hailey would like for her birthday as a gift from mom and dad. One day she was on her iPad and she was watching a youtube video of 2 little girls playing with Frozen dolls. Hailey had told me that she was going to get those dolls for her birthday and then it hit me that I should go pick up these dolls from the Disney Store. I had seen them before our Make a Wish anniversary trip to Disneyland and I also saw them at Downtown Disney when we went. I didn't buy them then because I knew they were in Vegas. I tell Josh we should head out and pick them up because Hailey would really enjoy these dolls and she watches that video on loop. You have all heard of her love for Frozen and how she watches and SINGS the songs all the time.
We head out to the first store and they are SOLD OUT. Second store SOLD OUT. Third store SOLD OUT. I'm sensing a pattern...Turns out these dolls are SOLD OUT across the United states! I could find them on Ebay for 3x's the price, but that wasn't going to happen. I even had employees I knew that worked in the parks looks for them and NO luck. I had people all over the country looking for these dolls. I had a feeling I wouldn't be able to get these dolls for my daughter. I was going to be a failure as a mother.
I called several places. One was Toys R Us and asked when their next shipment would be. I did have one of the managers tell me they would keep an eye out for me and they would help me get Elsa for Hailey! Another told me the Friday before the party. I went Friday first thing and NOTHING! I did meet a woman who I got to talking with. She was looking for the dolls as well. Hailey really wanted Elsa, but I'd take anything. She kindly offered to give me an Anna doll she had for her daughter. So sweet. I had told her to hold on to it and give it to her daughter I wasn't going to give up. I had also told her I called the Disney Stores and found out that the next morning they were going to release a shipment of dolls. We had both planned on going the next day to try our luck...
We woke up bright and early to head over to the Disney Store. When I got there I was 5th in line. As soon as I arrived more and more people came and the line ended up clear across the mall. I didn't know how many dolls they had and I didn't know if they'd have enough to last until it was my turn. I was having a panic attack! It was like it was 1983 and I was looking for a cabbage patch doll...
They were also going to release some Frozen Dresses but you had to put your name in a raffle for the opportunity to buy it and that was to nerve wreaking so I passed on that.
It was time for the store to open and they had said that the place you are in line outside the store is the place you'd be at the registers! I was so happy! I was going to be able to get these dolls for Hailey!! Happy Day!
First up is Anna!! I wish I had a video going. When Hailey unwrapped the box and saw Anna she said, "Oh my GOSH!!!!" it was adorable!
It was a great party! Great friends and family who traveled for hours to get here! I find these birthday's SO special and I love to go above and beyond. Thank you to everyone who contributed their time and their talent into helping me make this party perfect. Thank you to everyone who cooked, helped clean up, and to everyone who sent birthday wishes on Facebook!
Happy 6th Birthday Hailey!! Until next year!! We love you!!
Monday, May 12, 2014
On Mother's Day 2008 I was admitted to the hospital after being pregnant with my first child for 9 LONG months. Josh and I had been married for 6 years and I was ready to start a family. If I only knew then what I know now!
I had a high risk pregnancy because I needed a cerclage at 25 weeks. Since Hailey had become sick I often think back to that day in 2008 that maybe that was my body's way of telling me I shouldn't be a mother, and I didn't listen because I wanted kids so badly, that I was being punished now some how.
Labor wasn't as bad as I thought it would be. I mean yes, it hurt. More then any other pain I've ever felt. I was admitted at 7pm on the May 11th and Hailey was born at 10:20 am on the 12th. We were discharged on the morning of the 13th. It was kind of a whirl wind of events.
I remember her being born and the nurses doing all kinds of tests on her but in the end telling me I had a healthy little baby girl.
I instantly fell in love! When we brought Hailey home nothing was out of the ordinary. She slept and ate and slept. Just what a baby was suppose to do. Everybody LOVED her and came from all across the country to come see our new baby. I felt at that moment, I was meant to be her mother. I couldn't stop looking at her and taking pictures. I still haven't stopped with the pictures!
I remember thinking how lucky I was to be able to get to stay at home with my baby and also thinking that there was no way that I couldn't not stay home. I wanted to spend every minute with my baby. I wanted to do everything right. In the end I know I've made my share of mistakes and I'm in no way a perfect mother. I know that I always try to put Hailey's needs first and I try to go above and beyond to make sure she has the best days possible! That she gets what she needs. There is no one I think that deserves more then my daughter.
(This is my ALL time favorite picture of Hailey) I took this picture on an old cell phone and I've transferred it to every computer I've ever owned.
Today our daughter turns 6 years old and I am so happy with the person she has become. She is kind, generous, extremely friendly and she loves to LOVE. Her smile brings smiles. She waves and says hello to total strangers, She's a fighter, and she's brave. She can do things that I can not. She teaches me more then I will ever be able to teach her and I am beyond grateful for her!
The best mother's day present anyone could get!! Happy Birthday my beautiful baby girl. Yes you are MY baby even though you tell me you are a big girl now. Enjoy your day! We LOVE you!!
at 4:00 AM
Monday, May 5, 2014
Last year we discovered that Hailey enjoyed going to baseball games. This year we really wanted to make sure to take her to a few. Thanks to a very generous friends we were given a 4-pack of tickets to attend a Saturday night game!
We invited Hailey's cousin to join us and the girls had a blast! They even talked us into getting them snow cones! YUM!
The mascot Cosmo made his way over to us and we took some fun photos! This was the first time we've ever seen Cosmo this close!
The girls are funny. Hailey's cousin asked me if Cosmo was an animal? I said, no he is an Alien. Then they both started asking even more questions. Does he live on the moon? Does he sleep in a spaceship? What does he eat? Yes, Yes, and Snow Cones. HA!
We hope that we get to go again for Make a Wish night at the end of May. Hailey had a lot of fun last year and we miss our Make a Wish friends!
Thank you to Kelsee and Doug for the game tickets! We appreciate the opportunities to take Hailey to do such fun things and get to take pictures to add to our memories!
Saturday, May 3, 2014
Hailey was very excited to be given a kite at school on what happened to be a very blustery day! She's never flown a kite before and didn't really understand that the wind is what made the kit fly. She was mad it didn't automatically go up in the air and just start flying.
It took a couple tries but we got it to work! Josh would get it up in the air and then let Hailey hold onto the string.
Such joy and excitement of flying a kite!!!
Can you imagine if all it took to put a smile on your face was going outside and flying a kite? It's such a small thing to some, but to Hailey it quite an amazing thing. I'm glad for that.
at 11:41 AM