Saturday, December 31, 2011

Good bye {2011}

Tonight I am bringing in the new year by tucking my sweet little Bubba into his bed and hooking him up for the night, waiting for Regan to come home from a party with friends {thank you friends!! Serisously, I have the best of friends who know just what I need most when Bubba is sick, today it was taking Regan to play.} Hubs is working, and I am sitting here watching pride and prejudice. The house is quite and warm, it is nice. This week has been hard, this year has been hard, but there have also been some wonderful moments. "If you change the way you look at things, the things you look at change." So, rather than curse 2011 for the horrible, tear filled, long nights, crummy days I will celebrate the beautiful ones! I thought I would count down the top ten in pure Johnny Carson style. :) {Regan and Jason helped me with this list! }
Favorite moments of the year........

10. Family Fun in San Diego this Spring.  We were lucky enough to celebrate Pa Pa's 60th birthday with the entire family!

9. Going to Maryland and D.C. with Aunt Karen!!

8. A visit from Kai and Kylee {oh and Aunt Nancy and Uncle Ray too.} We were able to celebrate Kylee's 1st birthday with her!!!

7.A visit from a very special birthday boy all the way from Texas!!! Cousin Hunter!!

6. A visit from Maw and Paw! They were able to celebrate Regan's birthday with us!

5.A surprise visit from Poppie and Aunt Karen!

4. A special visit from Cousin Shane!

3. Getting our new addition to the family! Stanley!!!

2. Going to Catalina to celebrate 12 years of marriage!

1. Family trip to Texas!

2011 you had some wonderful memories and I will forever treasure them! Thank you to all of you that were part of each and every memory created this past year!! I hope that you, my friends, are able to find as many wonderful things to be grateful for as I am. It has been hard but it is the hard times that make she good ones that much more special!!! Here's to a wonderful 2012!!

Bubba update

Jason is cuddling Bubba so I have a minute to sit here and catch you up on our sweet  Bubba. It has been a crazy couple of days! First they thought it was viral, right.... then they came back and said that they thought it was neurological. They gave everything to his neuro team and then they came back and said that they don't believe it to be a neurological issue. So, everyone now believes that there is an infection some where in our sweet little Bubba but we have NO IDEA where or why. So, we have changed out his g-tube, started him on strong medications, and keeping a close eye on him. We have been able to keep him home!!!! FIVE CHEERS FOR THAT!!!! We thought he was going to have to come with a port but so far oral meds are working ok! SIX CHEERS FOR THAT!!! Last night he woke up for a bit and even enjoyed skypeing with Maw and Paw, we even got some smiles!! :) He crashed right after BUT it was progress. Today he only slept in until 11am and he was awake enough to give him a bath and go for a little walk, we went looking for a bus! :) We found one and got a BIG smile! Bubba crashed as soon as we got home BUT again... it is progress. I feel that the medication is working and taking care of what ever is going on with our sweet Bubba. SEVEN CHEERS FOR THAT!!!! Thank you so much for your love and prayers. We feel them! Please keep them coming. Hey, while I am asking for your prayers... can I add a couple more people to your list?? I can.. Oh good, thanks! Our sweet Buddy Cayden went in for his 16th surgery to replace the shunt in his head and is recovering. Uncle Bill is in the hospital and needs your prayers, my friends. Thank you all so much!!! BIG HUGS!!!!!!!!!!!!!

Thursday, December 29, 2011

prayer request

This is what my sweet boy has looked like for the past 3 days. He is not doing well, friends. The scary part is that we don't know what is wrong with him. He has no obvious symptoms other than sleeping in until 1pm. If you know Bubba than you know that this is very out of character for him. When he is awake he is lethargic and "out of it." He will be awake for 20 minutes and then crash. We had a very scary moment on Monday, I wont go into the crummy details, but I thought I was going to have to give my baby CPR. This morning we had the same problem of him not wanting to wake up. His doctor felt that we needed to bring him in for blood work to try to figure out what is going on with him. After loosing and then finding his labs we still don't know much. We do know that it is not bacterial so that is good. We do know that it is viral. They are worried since he is not showing any other viral symptoms other than be lethargic. There is a bad virus that TTD kids have a hard time fighting, we are praying that this is not what we are dealing with. If Bubba is not better by morning he will be admitted for more tests to try to figure out what is going on so that they can help him. They have done all that they can to keep him out of the hospital, it's not a good place for him to be. So, here is where I need your help my friends. Please pray for my baby. Please pray for help and understanding for his doctors. TTD is rare {less than 100 in the world rare} and they are not sure what to do with him. Please pray for my sweet Regan. I walked into the bedroom this morning and she and Stanley were in bed with Bubba and Regan said "Mommy, Stanley and I just said a prayer for Bubba... he'll be ok right???" My heart hurts for her as well. Thank you my friends. I am praying that he will be back to his sweet happy self in the morning and I can continue with fun, happy Christmas posts but until then I need your prayers.

Monday, December 26, 2011

One very {special} Christmas Eve

There are simple little things that make Christmas special. One of those things is being with family. I love that every year our tiny cozy home is filled to its capacity with family and love. I was sad at the thought of some of our family members not being here to celebrate with us. Do you remember LAST YEAR?? Well, we were able to "break" Uncle Bill out of his rehab hospital to be with us on Christmas Eve. We knew that we would not be able to do that this year, his health is worse, and his home is 30 minutes away. {Just too big of a risk} So, we decided that since we could not bring Uncle Bill to Christmas Eve we would bring Christmas Eve to Uncle Bill. Nana made one his favorite comfort foods, good ol' home made mac and cheese. :) Uncle Bill had a home nurse for a short time when we thought he would be able to stay in his home, she came to see him while we were there. Seriously, everyone that meets him falls in love, and despite only working with him for a few short months she keeps in touch and loves him. Well, his sweet nurse and boyfriend had no idea what they were getting into when they came to visit him. wink! After eating some yummy chocolate cake it was time for our Presley family tradition, reading Luke 2 and acting it out.
 Regan was the Angel
 Andrea was Mary
 Bubba was a Sheperd
 Nurse's boyfriend was Jospeh
 Great Grandma Jo, Aunt C C, and Bubba were the Sheperd
{We ended up getting a big audience that wanted to see our nativity fun}

 Uncle Bill and his nurse were the wise men

 After we finished up reading the story of the birth of Christ from the Bible Nana and PaPa sang Oh Holy Night. They have voices of angles!!! Hearing them sing this song is a favorite Christmas tradition to many!!! Everyone in the home LOVED it!!!
 Uncle Bill's face says it all. He loved it!
Uncle Bill would always play the piano with them every year, it was sweet to see him moving his fingers as they sang. I know the he was playing along with them in his heart. :)
I am so grateful that we were able to spend Christmas Eve with Uncle Bill celebrating the birth of Christ. I am not sure how many more Christmas Eves we will have with him and I do not take that for grantid. I feel so blessed to have him in my life.
{More Christmas Eve fun to come. Hubs had to work in the  morning while we celebrated with Uncle Bill but he was home for rest of the fun!}