Showing posts with label CHARGE Syndrome. Show all posts
Showing posts with label CHARGE Syndrome. Show all posts

Monday, July 4, 2011

William's Turn

Well the #1 son now is sans tonsils like little brother. I am praying this will help with the strep issue. Treating strep on average 6 times a year is not fun. I really don't like giving the boys antibiotics and having to give William some that often was not ideal. If you ever have a child in the hospital for any length of time you will see what effect antibacterial products and over use of antibiotics are having on us. Kind of scary. But I digress. William was originally okay with the idea but as surgery date loomed closer he got nervous. He even picked out a new pair of pjs and ice cream just for this occasion. What a nut. He did really good during surgery and was better than I thought coming out from anesthesia. He had a little rough time when we first got home but I think that had more to do with the anesthesia. I swear under tears I heard him say "why did this have to happen to me today?". Could that have pierced my heart anymore? Man. But I know this is going to be great going forward. After getting mine out at 17, yes I said 17, I have not had issues with the throat. Knock on wood. He is doing much better today. We are getting him to eat food which I hope will give him more energy and he hasn't had his prescription pain meds since last night. So far only Tylenol is keeping pain at bay. I think the funniest thing is this ice cream he really wanted he really hasn't eaten. He had one serving and that's it. What a nut!
Take care,
Raye

PS. William on the giggle juice is possibly the funniest thing I have seen. I really hope that is not an indicator of how he will act intoxicated. LOL!!

After giggle juice and getting Zelda 3D for the 3DS.
He could hardly hold it not long after this picture.

Trying to wake up. Poor Baby.

Rolling in the really big wheelchair

Yeah for Dad's truck and it's bench seat.

Feeling much better after a good nap!

Monday, June 14, 2010

Poor Little Jakey

My poor little Jakey. We had quite the roller coaster this weekend. Last week he did have a little cold. No snot or anything like that but a little cough. William had one as well. Well Thursday night he went downhill fast. Literally within about 30 mins he went from a little cough to wheezing and not feeling good. We got home from WalMart where we went to get more Cold & Cough medicine we started the breathing treatments. By the next morning he really hadn't had good improvement so off we went to the Dr. After oral steroids and two breathing treatments off we went to Cooks via ambulance. He had a high respiration rate and heart rate so the Dr. Hampton thought it would be prudent to transport instead of us driving. She also suspected pneumonia. Jake loved going on the ambulance. He thought it was an adventure. He even kind of did a nah nah nah nah to his brother when he told William about his trip. After two more breathing treatments and a chest xray the ER doc concluded it was probably just his asthma process. She couldn't rule out walking pneumonia since she still heard some noise in his left lung so she prescribed antibiotics. The good news is he is doing so much better now. If I could just keep my crazy 4 year old from running around that would be great. But you all know how that works.
Take care,
Rachel

Off we go on our adventure

Finally crashed. Couldn't even hold his DS.

Sunday, May 9, 2010

Mother's Day 2010

What a great day. Actually a great weekend. Saturday was a little stressful but fun. Got to eat at Central Market with my boys and then off to Jake's Loft. Love me some Jake's Loft. Got to see Courtney and Lil Teri and their crew at Jake's. I so wish William's soccer game hadn't got moved. We would have had a blast at CM drinking some wine. After William's game we headed on over to Mary's for a cookout with my Mom and Oma. Boy was Mom surprised when Mike opened the door. He came in from Cali to surprise her. Sunday was all mine. I got to sleep in until 8. Woot! Yes 8 is sleeping in for the Harrison's. I have no idea why my boys can't sleep in. Even if they go to bed really late their happy butts are still up by 8 at the latest. I am sure they will grow out of that at some point. Hopefully. My amazing boys got me an iPad for a gift. It was completely unexpected. I was thinking a spa day was in my future. It has been so much fun playing with it. It is like crack. Rachel please step away from the pipe. It was off to Don Taco for lunch where we completely pigged out and off to soccer, again. The season that never ends. The best part was that I got to spend time with my boys doing what I wanted, well almost. The greatest gift Doug ever gave me was those three amazing boys. I stand amazed when I look into William and Jake's face and remember Ryan. I did that. Well with some help. I have wanted since I was a little girl to be a Mommy. Not just to have a living doll but someone that was a part of me. I couldn't wait to teach them their ABC's or colors or about the stars. It is just wonderful. And that poem is so true. To be a Mom is to accept that your heart will walk around outside of your body for the rest of your life. I just pray they will always have room in theirs for me.
Much Love to all the Moms!
Raye

Crazy boys

Kisses for Mom

Sunday, March 28, 2010

Members In A Club We Never Wanted To Join

Today was Jake's birthday party but it was also an anniversary for a fellow Angel Mommy. Today was Carleigh's 1st Angelversary. Carliegh was born sleeping one year ago today. My heart goes out to Holly especially since we are coming up on our 5th on Friday. I am blessed I know these women but I hate that I met these woman being a member of this club. Never in a million years did I think I would be in this club. It stinks and sometimes I just want to scream. But then I stop take a deep breath and realize how blessed I truly am in this world. Unlike Holly who had to say goodbye while she was saying hello I got these amazing 9 weeks and 6 days with Ryan. That is a blessing that I will always remember. Here is to Holly and all the Angel Parents out there. We are members of this club we never wanted to join but we have each other. Either online or down the street we are always here for each other.
((hugs)),
Raye

Getting ready to release

Off it goes

Monday, January 25, 2010

Happy Heavenly Birthday

Mommy, Please don't cry...
We have lots of parties here.
With Streamers and hats,
And the best chocolate cake ever!

What a great day yesterday. Normally we celebrate Ryan's birthday with just Doug, the kids and myself but we decide to open it up since it would have been a milestone birthday.Doug and I decided back on what would have been his first birthday to make that day a happy day. We celebrate the time we had with him. There are plenty of other days in the year to be sad and think about his passing. We decided to do a balloon release on his birthday this year when we usually do that in April. In the throws of grief it is hard to appreciate what you had and not dwell on what is lost. As time goes by the heartache gets replaced with joy just a little at a time. I am not saying the heartache will ever disappear but it lessens with allowing the love we felt and still feel to overtake our hearts. Like the quote from Mommy Please Don't Cry states above I bet that Ryan and his buddies Parker and Gabriel are having a great party. I have a feeling Grandpa Bill and Opa are letting them get away with way too much fun. May your hearts always be filled with the love you share or have shared and not the grief you have experienced.
((hugs)),
Raye




Thursday, December 24, 2009

Christmas Hugs From Heaven

As much as I LOVE this time of year it is still hard. As I watch the boys open their presents I can't help but long to watch the one that is not here open his presents. But I think about the time I did have him and cherish those memories. I found this poem and wanted to share it for all those who have loved ones that are not here for Christmas.

Christmas Hugs & Kisses

Please don't be sad now that we are apart,
celebrate Christmas with me in your heart.
Our best Christmas ever is still yet to come,
for Heaven is where the first Christmas is from.
And so I look forward to when you'll be free
to spend your first Christmas in Heaven with me.
I'm waiting with angels, and until that day,
I'll keep sending my hugs and kisses your way.

Tuesday, November 17, 2009

Prematurity Awareness Day

Why I Walk

So others won't know the pain we've known
This is why we walk
So every child has a chance
This is why we walk
For Tanner, Parker and Myles
This is why we walk
For Ryan & Jake
This is why I walk


The US is failing it's youngest most fragile population. Prematurity can happen to any woman. It is not just a socioeconomic issue. It is a global issue with the US not doing so hot in the statistics. It is said it takes a village to raise a child.It appears we are not doing well in that respect. People think well it is not my child so why should I care? Well let me tell you. If you live in Tarrant County you help pay for those born too soon. Having been a volunteer in the NICU at Cook's I saw those babies in that unit that were transferred from JPS. Even if you look at it from an economic perspective an ounce of prevention is worth a pound of cure. You would also be surprised by the ones prematurity does strike. I had great prenatal care and still had two babies early. Even though I did everything "right" they still came in this world before their time. What was really hard to watch was after Ryan was born I watched someone smoke and drink during their pregnancy and their son by all accounts seems fine. That is why the mission of the March of Dimes is so important. They work tirelessly to get to the bottom of these complex issues. Next time you think not my child think about your neighbors, friends, fellow church members or your coworker. Someone you know has been touched by prematurity. If you are reading this you know me and so you definitely know someone that has been touched by prematurity. Band Together. Help the helpless. And now I will get off my soapbox. Thank you to everyone who supports us and our passion for the March of Dimes. Words will never be able to express our gratitude for every one's support over the last almost five years. Wow. Five Years. That is another post for another day.

((hugs)),
Raye

6 weeks too soon - Ryan

4 weeks too soon - Jake

Thursday, October 1, 2009

March for Babies - 2009 Awards Lunch

Oh my. Has it really been over two months since I last posted. What a slacker. I promise to be better. On Monday we attended the Fort Worth March for Babies Luncheon. We weren't in the top 5 but that is ok. We missed it by that much. I am still floored over the amount of support we had this year. Especially in shaky financial times like we are experiencing. Dr. Grubbs was the emcee so that was really cool. You know I love me some Dr. Grubbs. I have learned not to rush up to him if I see him in public. We do see him at least once a year at the Warm Place fundraiser. I let him talk to us which he did. I got my usual big hug from him. He is such a wonderful and gentle man. Cook's is lucky to have him and the parents of the children he cares for are also lucky. Mom & Doug went with us this year so that was fun. We sat next to Amber Augustin and her team. They are the Extreme Makeover family. It was nice to meet her and she seemed nice. All in all it was a great lunch once again. Can't wait for 2010. I will get on with creating the Miracle Munchkins store so everyone can get their Munchkin items. Yeah for us!
Take care,
Raye


Our name badges with program

Me & Teri Lyn

Dr. Grubbs

Mom, Teri Lyn & I

Thursday, April 2, 2009

It's Just a Day - Right??

This day will come every year. I have no control over that fact. I can control how I react to this day. At approximately 9 pm four years ago my beautiful boy flew to heaven. On some level I should feel joy as he is no longer in pain. He no longer has a tube stuck down his throat or an iv jammed into his arm or some other place on his body. But my heart still just aches. I know it is selfish for me to want him here but I don't care sometimes. I just miss my little guy. The What If game pops up about now. What If we would have made this choice, What If we decided to do this, What If we had waited to do that. It will drive you crazy. But life must go on. I have two crazy boys and an unbelievably wonderful husband who need me. Thank God! I guess this is just another day. We will see.
Much Love,
Raye

Saturday, January 24, 2009

Happy Birthday Ryan

Well today is Ryan's birthday. I can't believe he would have been four today. Man. I feel like I have lived a few lifetimes since those days. I find myself wondering sometimes what he would have looked like. Would his syndrome completely keep him from looking like Doug or myself. Would he have looked like William like Jake does. All these questions. And no answers. I am so very happy for the short time I had with him. Tonight we went to dinner to celebrate his birthday. Jake loves to do his cheers so we cheered Ryan and his birthday. William said we were celebrating Ryan's birthday at his party today. He was happy to share that with him. William can be so sweet sometime. If you get a minute say a little prayer for him and wish him a Happy Heavenly Birthday.
(((hugs)))
Raye

Sunday, January 11, 2009

Azleland

Today we finally went out to visit Ryan. I honestly think it has been almost a year since we were there. Being there today really brought it out how much I want to move him. And Dad for that matter. I need to have a conversation with the caretaker. The ground is in such bad shape everything is sinking. He has only been there for just shy of four years and he is already starting to sink. At least they raised Dad's. The place is just so country bumpkin'. Ryan is right under a bush and power lines just on the other side of their maintenance area. I was taking pictures and I noticed and old Ford tailgate. All I could think is really?? I appreciate my family stepping in and helping in those days. I could not have gotten all that together without them. But I am just not happy with him under that bush. It just seems odd. But the important thing is he and Dad are in the same place. Now if I can just get my butt up there more. One really sweet thing was with Jake. I kissed my hand and then touched the marker. William saw me and did the same thing and then told Jake to do it as well. So Jake proceeds to bend over and kiss the marker directly. He is crazy. He understood we went to see Baby Ryan but he has no clue who Baby Ryan is at this point. I tell him he is his brother but I think he is still too young to get it. He will soon enough.
Take care,
Raye

William & Jake helping clean up the marker

The tail gate

The property next to Azleland