Nevada

I want to get mommys tounge!!!

We have a problem. Sitting in this little apartment going nuts is not doing any of us any good. Trying to get out and do something in a big city with no one around is impossible. Janita wanted to see something new. I wanted to see something used. Mason wanted to see something. So we drove to the Bonneville Salt Flats. Oh, and since Wendover was just ten minutes away, we kinda snuck over the boarder. Although we didn't go in anywhere we were just able to sight see a little. Helped us ease our craziness from just sitting all the time. So here are some pics from our little trip.

Here is a video of Mason Enjoying his bouncer. I hope he doesn't grow wings and fly away!!!

What's In A Name

Mason, your name was chosen with careful consideration and openness between your mother, father, and your Heavenly Father. We had talked many hours about what we should name you should you be a boy. The only name that sounded right for you was Mason Daniel Bartholomew. At the time of your birth we only new what your name would be, not what it would represent. Now I know why your name is what it is.

Mason means skilled laborer or sculptor of stone. From the time that you were born you were sculpting peoples testimonies. Teaching people to know and understand the foundation for which their faith rests upon. You were able to teach the principles of fasting and prayer to not only you parents but for many people whom your spirit had touched. You have been teaching your parents the importance of relying on your Father in Heaven. Asking for Blessings, and putting all faith in the Lords hands in your behalf. We pray that as you continue your journey in this life, that we as a family and as friends can put the tools in your soul to sculpt yours and the lives of people around from firm foundations of faith to everlasting temples of righteousness.

Daniel was chosen for your middle name, not just for you, but also for your father. This name is to help your father know and understand that you are following him in this life. It is ultimately your choice to follow Gods plan. But it is your fathers obligation to teach you what your heavenly father wants you to know.

Bartholomew is the final part of your name. This name has been handed down many generations, and will continue to be so till the end of time. You as well as I have and obligation to our forefathers to uphold this name in righteousness. To carry it on into the millennium with honor. I pray that you will take this name and cherish it as much as we cherish you.

We have had a fun couple of days. It is very nice to make memories as a family like a long extended vacation. Yesterday we snuck up to preston, all of us, to see the house and visit with family. I also filled a WIC check while I was there. We got back to SLC around 2:30 AM. It was a lot of fun to see the excitement on families faces to see little Mason. Mom was happy to finally see her house again.

Today we went to Walmart and bought a loaf of bread and some sandwiches and went to Liberty Park to feed the ducks. We were able to get the ducks to come just a couple of feet from us. Mason was so cute, when the ducks quacked Mason would do his grunt. It was so funny. We even got the seagulls to come and eat bread. The seagulls would try to catch the bread before it hit the ground. Some were pretty good at it. My dogs won't even try to catch anything with their mouth. When Mom was throwing bread Mason reached out and grabbed the slice of bread from her and pulled it apart putting some in his mouth. I wonder if this means he is ready for real food. A sign is a sign.

Well here it is clinic day again. We thought all was well. Mason seems to be doing good. Janita is still sick. So I took Mason to clinic myself while Janita stayed home to keep from getting anyone else sick. The doctors, I think, were more concerned for Janitas heath than Mason. So they said they would try to find a cheap place for Janita to go to get checked out. Mason took five pokes from I.V. Team to get enough blood for testing. My poor little boy. I felt so bad. After the fourth time I told them they get one more shot. No blood, No more tries. So they got it the fifth time.
Janita was told that she has a cold virus and that antibiotics would not help her. She still has a mild fever and has been wearing a face mask 24 hours a day since Saturday. I hope she gets to feeling better soon. So while Janita was at the doctors getting her check up, Emily Bullock called to inform me that Mason now has a clot starting to form on one of his sutures. So now we will b giving in an injection to thin his blood and to break up the clot. We are a little scared for his health but were informed this isn't too uncommon. Mason did get to drop his Calcium Carbonate permanently. WOO-HOO!! Home health came to show us how to administer his new injection. She was very professional. She also made sure we felt confident in what we were doing. I hope things start to settle down. This up and down emotional roller coaster is getting old. I just want my boy healthy and safe. Today I feel like I am just overstressed with all that is going on. All the drugs, take one away, add another. When does it end. I hope it gets better.

We went to the 25th anniversary for heart transplants on saturday. Janitas sister Jeanna drove down from preston to watch Mason while we went. It was an awesome opportunity for us to see other patients young and old, to help us know and understand that this really was a good idea for our little man. It was awesome to see how well all the doctors from four hospitals work so closely with each other to learn and teach amongst themselves for greater successes in the future. Dr. Evverett and Emily Bullock were both recognized at this dinner for their expertise. Two of which we work so closely with. The dinner was $40 per person, but ours were already paid for. Dad spent most of the time holding back tears of excitement to see such success. Mason was unable to go but we took a photo of him with us. The advancement in heart medicine is progressing in leaps and bounds. We also took a moment of silence for all of our donors and families. What a great opportunity to show respect for those who were willing to share their lives with us. I can honestly say that I have been grateful for this time to learn and understand the transplant process in great depth. I don't wish this on anyone, but I do know that it is not impossible to get through. We have grown in knowledge and spirit during this time. We also hope to continue to grow in the future. One thing we have found that really helps us get through this is to speak with other families who have gone through or will go through this. You learn to become a family with many other people. You understand some of what they are going through and they know that you kinda understand. We have met many new friends through this experience. We had no idea there were so many families struggling with CHD. I now know and understand that we are not alone. We are grateful that even families who have lost children to CHD don't give up. They still work hard amongst the group to help the rest of us. We really admire their strength.

Today we received a phone call from Emily Bullock that Mason can quit taking his lasik. We are so excited 1 down 13 more to go. Thanks for all who pray for us and keep us going strong.

to be continued

STORY TIME

Oxygen

BYE BYE BYE BYE BYE BYE BYE BYE BYE BYE BYE BYE BYE BYE BYE BYE

SAYING GOOD BUY TO MY OXYGEN!!!!



GOING GOING GOING AND GONE!!!!!!



Yea it is finally gone it would have been gone when i got out of the hospital but we didn't have a prescription for them to come and pick it up so we had to wait to get a prescription but it is gone know and we are all so happy!!
Mason hated his Oxygen he was on it for about three months he would suck on it or put it up on his nose so we had to tape it to his face. It was a pain for us to untangle him from the hose carry the tank everywhere when we had to go so we are as happy as mason to see it go....
YEA!!!!!!!!!

one good day!!!

Today Has been a pretty good day mason woke up happy, and

ready to play!!! Mom and Dad was still real tired so mom moved

me over to there bed hoping to go back to sleep!! But I got them

up when i had a blow out all over there sheets! I have a way at

getting what I want, they both got up in a hurry! I never thought A kid could poop so much

these meds make it bad I poop and spit up all day the doc said the meds make me. I will change

meds in about 3 more weeks so it should get better, mom hopes. I

could play all day I am loving my new heart. I have so much

energy I squeal and talk and kick, and play all day!! My mommy

and Daddy love me so much!!! And I have to say I love them too!!!

This has been a fun morning for me (Daniel). Mason has been awake since about 8 this morning. I have been up with him so Janita can sleep. All he wants to do is coo and caw. He enjoys playing and sitting on dads lap. He is in such a good mood. He had a little bit of Tylenol yesterday. But he really doesn't even act like he is hurting. He is so amazingly tough. And a lot of fun. I love to hear him squeal.

We have had a wonderful day today. We had a writer for the Idaho Preston Citizen newspaper come to our apartment to interview us on the behalf of Masons transplant. I hope that they are able to understand how we feel and can properly write those feelings for us. We are very grateful for our blessings in our life. We understand that it is Gods will as to what happens with our son. We are grateful for friends and family for all their help. This has been an interesting challenge for our family. We have also been invited to go to a dinner celebrating 25 years of heart transplants. The price is $40.00 per plate. But luckily our dinner was paid for by someone else. Mason will be babysat while we attend. We have decided that we will take a picture of Mason with us and place it on the table. I am amazed at how well Mason has healed and how far we have come in the advancement in heart medicine. I found a video on webmd for heart transplants where the heart is still beating on an artificial machine. Reducing the chances for rejection, and also the amount of damage done to the heart from being transported below 50 degrees. I think this is way cool. if you can you should check it out. Mason is being fussy today, I think because he is still teething. He doesn't want to eat. I hope this goes away soon.

The following is a story we found on someones blog. We don't know who wrote it but we do feel like we should share it. It doesn't fit our situation perfectly but find it a very beautiful story. Be prepared with a box of tissues it is a tear jerker.

Its a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels say to Jesus "I don't want to leave, I like it here, and I will miss you." He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down and says, "how about if you leave half your heart here with me and you take the other half with you, will that be okay?" The angel smile's and says, " I guess that will work." But the little angel is still scared. He asks "Will I still be okay with only half of my heart?" Jesus replies "Of course you will, I have other angels out there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your Mommy will be scared, so you will have to be strong, and when you feel weak just remember that I have the other half of your heart." " Enjoy your time with your family, play and laugh every day." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

Author Unknown

WE ARE GOING HOME!!!!!!!!!!!!! I am all dressed and ready to go in my new outfit and hat that I got from a really nice nurse. Yesterday was a big day. We got all packed up and out of the hospital. We are officially out of the hospital with Mason, and boy does it feel good. Mason got some visitors as soon as we got home. Mandy and Jon Winn stopped by and we had an excellent visit with them. Then Jeana showed up and she was able to spend some time with us and see her nephew. Then Jacyn and Nicole. Wow quite the crew. But it was so much fun.We then found out that our good friends from downstairs have found a house in Ogden and are moving today. We will miss them but know that it is the next step in their journey. Matt donated his own kidney to his son Henry. So we all have become good friends and understand each others feelings pretty good. We even went to the temple with them. What an excellent experience that was. Now we have to find new friends.
One of our new friends are Raychel and Cody up a PCMC. Raychel is 19 and waiting for a Heart transplant. We pray for them and hope she gets her heart soon. We hope that things that we have said have been helpful to get them through their journey. But sometimes just having a friend to talk to is helpful. At least for us. Good luck to them.

SMILE

We have been preparing for our discharge from the hospital TOMORROW!!! We are so excited for Masons speedy recovery. Six months left till we go all the way home to Idaho. We also got to go and watch the KSL Radiothon today, here at PCMC. What a great world we live in when so many people can come together for a great cause and make every miracle count. We are so impressed with the amount of dollars that came in. $81,860 from 4pm - 12am. Mason sure has left an impression on all the nurses here. They think he is way cute and they have never experienced a baby so willing to take medications. Mason, your parents are proud of you. We love you and pray that you will recover quickly, so you can return home with us. Congratulations for the quick recovery so far.

He still is sucking like crazy on his hands, and if we can see correctly, there may be another tooth on its way. Can anyone say steak and potatoes? He is awfully noisy when he starts sucking on his hands. We have brought up his teethers but for some odd reason his hands taste better. Dad don't like his hands in his mouth, cuz that where germs come from. but the nurses told him to get over it. Thanks! He even had a cookie today as you can tell he REALLY enjoyed that.

Tuesday was a big day for Mom. She stayed in SLC with Mason while Dad went back to Idaho to wrap up a few projects. Dad later returned that night. Meanwhile Mason decided that today would be the day he would officially push a tooth. Hooray tooth number one!! Good thing he is on loratab. More pleasant for all of us. Mason did gain weight. Emily our transplant coordinator came and discussed Masons medications and other future objectives with Mom. This was to get her more familiar with Masons regiment.

The last couple of days have been so much fun Mason is playing so much. He acts like a brand new kid!! He loves to sit up and play you would never believe he just had open heart surgery a week ago. Today was a little rough morning he had to have x-rays, labs, and a echo. But after getting all this done he was happy the nurse that did his echo gave him a soft blue fleece blanket, he loves it he enjoys soft blankets against his face. He is eating well and we hope we can get out of here without the g-tube. I think he can gain weight on his own. Mom read him Dewey There's A Cat in the Library! He loves it when mom reads to him, and she loves to read to him!!!! We had two beds and a recliner in our room but when we went to dinner we lost a recliner the nurse gave it to someone else because they were looking in our room thinking it was no fair. We our suppose to only have one bed but we got hooked up this time. So we lost a recliner but still have both beds so I won't complain, and will just be happy. We met a neat little family yesterday. There is a 19 year old girl that has been threw many heart surgeries in her life, and is now on the transplant list needing a heart. Please keep her and her family in your prayers. We had a good talk with her her aunt and her boyfriend and was asked today if we would go speak with her mother, and we said we would be happy to they are having a rough time. Thanks everyone for your continues prayers for Mason we know its your prayer's that is getting him as well as us threw this. We love you all!!!! This look is because dad moved my fingers from my mouth and nobody moves my fingers from my mouth!!! I love to suck my fingers what is wrong with my Daddy??

Mason is doing well we got moved up to the third floor so he can have more gifts so we went and bought Mason some balloons and a hippo that sings a love song and a little alligator. He didn't quite know what to think at first but has come to really enjoy it, I think it was because mom dad and the nurse would sing to him. But I think the thing he likes the most is seeing his reflection in the heart shaped balloon. We had visitors that same day. Janitas' parents gave us a surprise visit they also came with Jeanna and Jeramiah. Jenn and Jer also made a visit late that night. Mason sure likes his uncle Jer, He can get him smiling and laughing almost as good as his MOMMY! LOL They bought him a little rattle and a teddy bear that he just adores. He just smiles and smiles. Mason seems to be a real happy boy anyways. Which makes taking care of him a lot easier. Whew what a blessing!!!