My Journal-1 Year Old!
If you would like to read stuff about things that happened in my families life before I was born, I'll tell my Mom to include it under "My Family". Anything my Mom writes is written like this. Now onto important stuff... ME.
23rd April 2004 - HAPPY BIRTHDAY TO ME! We had another party at the new house. The people over today was Mom and Dad, Grandma and Grandpa Hunter, Uncle Adam and Kim, Chrissy (my Godmother), Carolyn. My Mom's friend Amber was going to come, but her daughter was sick. I got a new swing, a tent for it to go in when it's outside, a flames jersey, blankets, more toys and clothes! I got pictures taken at Wal-Mart.
6th May 2004 - Kyleigh had another really bad problem today. Her oxygen went down to 7 heart rate down to 60. We got lots out of her today, I think she's going to be OK now. These problems she's having come without any warning, I wish there was a warning though.
9th May 2004 - HAPPY MOTHER'S DAY! My Mom is the best! It's to bad there is only one day a year devoted to Mom's. There should really be one day a week!
12th May 2004 - Today, I got to go out for a change. We went to St. Joseph's School. The kids there have been doing fund-raisers to help me, so I had to say "HI" Global news was there, so I was on TV again tonight. I like being on t.v. The kids were great! My Mom cried alot! Grandma Hunter came with us. Dad stayed awake to come too.
13th May 2004 - I said another word today, I said "Dada" Mom heard it. I did it a few times, but I had a little help. The suction catheter was in my mouth, it made it really easy to say it. Dad was ready to do cartwheels!
14th May 2004 - Today was another busy day! The students at Catholic Central High School wanted to hold a bake sale and asked if we could come. So we did. I really missed my TV I had to keep crying until I made Mom Dad and Grandma Hunter leave the school. Funny ugh? Elementary school on Wednesday, High School on Friday, Look out world...Kyleigh had a really big problem this afternoon. Her heart rate and oxygen were both at zero. My baby girl died for a few seconds. Once again it was not her time, she came back to us. She will be staying on BiPAP for the next 50 years!!!
15th May 2004 - I had to stay on BiPAP today, but that's OK, it scared me when my Mom took off my mask to fill the humidifier. I am glad that only takes a minute.
16th May 2004 - Mom let me come off my mask twice today, for 30 minutes each.
17th May 2004 - I got weighed today, I am now 15 lbs and 13 oz. Mom let me come off my mask twice today for an hour each.
18th May 2004 - I got my RSV shot today, they told me this will hopefully be the last one! It better be they gave me two this time! How rude! I was off BiPAP for a total of about 4 hours today.
19th May 2004 - HAPPY 25TH ANNIVERSARY GRANDMA AND GRANDPA HUNTER, what did you get me? Only came off my mask today for about two and a half hours today.
1st June 2004 - Today was my Mom and Dad's 2nd anniversary! Grandma, Grandpa, Uncle Adam and Kim came over for dinner.
2nd June 2004 - We had family pictures at Sears done today. I was such a good girl!!! I smiled for most of the pictures and didn't cry once! My Mom was really happy.
4th June 2004 - I coughed on my own today. I don't know why my Mom was so happy about it. She says I haven't coughed in about 9 months.
7th June 2004 - Mom, Dad and I all gave blood today. We were getting genetic testing done. They only poked me once.
5th July 2004 - Kyleigh wanted to go down for a nap around 5:30 so Rob and I got her all set up, she was on BiPAP and resting comfortably, or so we thought. Rob left for work and maybe a minute later her alarms were going off, I thought her hand was cold, but went to check anyways. I got into her room before it sounded again...her O2 was at 12% and her heart rate was just a red line. I don't know why but I grabbed the stethescope. There was nothing...no crackles, no heartbeat...nothing. I kept suctioning, she was dry, very, very dry. I even had to spit on my fingers to moisten the catheter, I didn't get anything. I tried O2, that didn't help. I called the ambulance, they got here right away. While I was waiting for them to get here I was beating on her chest so hard she was bouncing off of her mattress. Her numbers finally started to pick up, a little. I still don't know why,! but I put her mask back on her and slowly, but surely her numbers were coming up. After they got to about 80 I started to cough her. When the EMT's walked through the door she was getting rounds of coughing and BiPAP. She was in the low 90's and her colour was passable. For the next 12 hours Kyleigh had all kinds of problems. She was unresponsive for about an hour, she lost her eye sight for about 3 hours...she was so afraid, you could see it on her face. This is now the 3rd time that my daughter has been dead. I didn't think she was going to come back to me this time.
17th July 2004 - Kyleigh is still weakened from the 7th, when is she going to get strong again? Her oxygen levels dipped to about 6% her heart rate stayed over 30. She responded alot quicker to treatment but still lost vision for about 30 minutes.
21st July 2004 - HAPPY BIRTHDAY MOM!
23rd July 2004 - My doctor from the children's hospital came to the town we live in and wanted to see me. We went and she was really happy with everything, even though I haven't been doing so well lately. Also Grandpa and Mom finally welded my tray for my stroller, it works great! Thumbs up you two!
12th - 15th August 2004 - We went camping! I love camping and this time I didn't have to sleep in the tub! We were in a van for a really long time, like almost 2 days! But we stopped alot too. It was fun, there were other SMA kids there too, but they were all bigger than me. Mom said it was a FSMA camp. My Mom's cusin and her husband ate lunch with us the day we had to leave. I needed to be at home. We also stopped and saw my Mom's Mom's Mom and Dad, or my great grandparents. I am in need of a bath and a snooze!
31st August 2004 - Mom says I lost my smile. I am still really happy, but it's just too hard to smile all day long.
26th September 2004 - Mom bought me cool toys that I can play with all by myself. They are Halloween toys, there's a Frankenstein, mummy, and a skeleton. Let's hear it for Wal-Mart!
10th October 2004 - We had Thanksgiving dinner with my Dad's side of the family today. I got to stay really close to the tv, I even watched some movies I've never seen before! I feel a little sick, got some stuff in my lungs and Mom says it's time to cough.
31st October 2004 - I am a renaissance princess! We were going to go to a party but Mom got the information wrong, she's upset! I have been trying to tell her it's OK, it's not like she lets me eat candy! Mom wanted this Halloween to be great because last year we were in the hospital.
3rd November 2004 - Mom made me watch some dumb show I didn't want to watch, so I pretended I was asleep and Mom put in a movie I like! I knew I would get my way, when Mom noticed I had my eyes open I had to shut them really tight and pretend that I was trying really hard to wake up. My Mom called me a stinker! Can you believe that?
28th November 2004 - Today we went to the movies. Mom said it was the McCains children's Christmas party. I was looking beautiful, as always. Grandma even got a pass from the hospital to come with us. It was great to see her! I had a really fun day I even talked to some other little girls.
15th December 2004 - HAPPY BIRTHDAY DAD! I got my RSV shot, that's really not a good present!
19th December 2004 - Rob and I went to dinner with his parents for Rob's birthday. Shortly after we left someone left a small Christmas tree on our door step. It had red lights, that's Kyleigh's favorite colour, and a silver angel on top. 'cause they couldn't find a red one. The note said this: "Kyleigh, merry Christmas! We thought you would enjoy your very own little Christmas tree. And we heard it through the grapevine that you love the colour red! So your tree has beautiful bright red lights on it. Unfortunately Angels don't come in the colour red :) We love you!" The Christmas card that was attached said "To the Anhorn's: We want to wish you the best of the season! We hope and pray that God's blessings will be with your family. We hope a few extra dollars will come in handy this Christmas. We love you very much." There was $200 in the card! My Dad was the one to answer the door, but he didn't see anybody. Kyleigh is just staring at it! I don't know who's writing this is! I am in shock!
1st January 2005 - HAPPY NEW YEAR!
11th January 2005 - This morning my Dad came over, him and I were going to go into town do get some errands done. Well Rob doesn't like to cough Kyleigh so I did and then I brushed her teeth, you know just getting her ready for her big day (of sleeping! ~ she's on night shifts). I picked her up and was going to change her bedding and the phone rang, so I gave Kyleigh to my Dad for him to hold. He didn't hold her for too long when he gave me this weird look and said "something ain't right" she was blue-grey. I threw the phone to the floor and went into automatic pilot. I remember wanting to know how bad it was and got her pulse ox on again (honest to God she wasn't off long and there were two of us in the same room the whole time!) she was at 29% O2 and her HR was under 50. Thank God she came up fast, it was very fast. You know how when that happens and time stands still, it didn't happen this time. It is the weirdest thing. I am not certain what happened, but I told my Dad and Rob that I didn't get all of the toothpaste stuff out of her mouth before I sat her upright. Who knows maybe that is actually what happened, afterall this was the first time she's had a bad crash that I've ever been able to suction anything out. She's OK now, but wow what a dose of reality!
11th February 2005 - Mom and I are both sick, this stinks! We are both on the same medicine. The doctor thinks we have the flu! Why'd I have to get that needle? I need to get back to bed!
13th February 2005 - We are still sick! Mom lost her voice, that was great. But I feel horrible! I hate being sick!
14th February 2005 - HAPPY VALENTINES DAY! I got pj's, books, a carousel, roses of course! I feel better today but I am still a little sick.
16th February 2005 - Had some problems today but it wasn't too bad or for too long. I have to go on another anti-biotic since I am still sick.
21st February 2005 - I am finally feeling good, I have some trouble when I eat but Mom gets it. I am feeling good enough Mom says we get to have our spa day! I am so excited!
27th February 2005 - Daddy moved out today. Mom keeps telling me that it's not my fault, but I think she needs a mirror!
8th March - HAPPY BIRTHDAY GRANDMA! We had a pizza party, it was lots of fun!
5th April 2005 - Mom bought me a van! I am so happy she said we can start going to movies and shopping! It has a wheel-chair lift in it. The best part is, it's red!
13th April 2005 - My COLE's quilt arrived today. Check it out on the picture page. Big huge THANK-YOU's to Kristin Webb and Linda Zuroff for all the hard work!
Also today we went to the hospital and I got to watch myself on tv. Mom was happy after we left, she said the doctor was a good guy. Whatever that means. After we left we went to the movies, I snuck in my nap. What a day!
19th April 2005 - My B4SMA quilt arrived today! THANK-YOU MJ Purk and Brenda Hanson! Check it out on the picture page.
20th April 2005 - We went shopping today. Mom and Grandma kept showing me stuff and saying they would get it for me, but all they got me was diapers! I was so upset and I cried so hard that it made my head hurt!