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!!!!!!!!!!!!!

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.

we are back {and I need your help}

We made it home safe and sound from Texas last night. I Love Texas BUT California is home and it is good to be home. :) I had so much fun with my family and friends that came to see us!!! Bubba has not been to Texas in six years becuase it is so hard on him to travel. THANK YOU to everyone that came to spend time with us and truly enjoyed their time with my sweet babies. Those sweet moments made the hard parts worth it. Bubba had a hard time most of the trip and was not his super happy self but every now and then his sweet smile came out and we all loved it!! I will share LOTS of pictures and more about our trip later BUT for now I am busy taking care of my baby boy. Last night I could tell that Bubba was in a lot of pain and his cough was getting much worse. So, first thing this morning I got him into the dr. Oh, and guess what... when we got to the building we found out that the elevator was broken. At that point I just burst into laughter.... it was all that I could do to keep from crying. Quick note on the goodness of strangers.... while a woman and I were carrying bubba and his wheel chair up 3 flights of stairs a man saw us and ran to grab the chair and help us. Same thing happened on the way down, a BIG scary looking dude saw us and ran down the stairs and carried his chair like is was a feather. WAHOO for kind strangers. :) Well,the climb was worth it..... I found out Bubba is sick, like super sick. The dr. put him on atiboitics, steroids, round the clock breathing treatments, and put him on strict house arrest. If he is not looking better by Wed. then he will most likely end up in the hospital. We don't want that!!!.... with Bubba's weak immune system and SOOO many bad things going around this time of year the dr. wants to do everything we can at home first. So, here is where I need your help my friends..... send those prayers our way. Please add Bubba to your prayer list. Thank you so much !!! I will keep you posted and until then me and my little man will be doing this.........

please excuse any typos.... typing one handed{while holding Bubba} on no sleep is not a good combo. wink!

No cute title tonight...........

I just can't come up with one.

You know something I have learned over the years is that during some our darkest moments we receive the greatest gifts of sunshine. Today was another HARD day for Bubba. He seemed fine when he woke up this morning. I took him to school and then headed off to school myself. I needed to turn in my finals for the last week of school. Bubba's teacher knew that I was going to school so when I saw him calling I knew it was important. He then told me that Bubba was having seizures. I left school and headed back to Bubba, on the way I was on the phone with his neurologist. They told me that he was having "cluster seizures" and that I needed to give him valium again to try to stop them. {this is his 4th straight day of bad seizures.} When I got to Bubba's class I was still trying to process it all..... "Ok, I need to give him the valium... what am I going to do with Regan...{Jason's parents are out of town and Jason was at work}.. I guess I will just get her now." Bubba's wonderful Ms. Sherril could tell that I was stressed and then told me not to worry about Regan, she would bring her home for me. This was such a HUGE ray of "sunshine" in my very dark day. I can't even begin to tell you how much this gesture of kindness meant to me. We got home and Bubba continued to seize, the doctor order yet another medication for him. {if you are counting that makes 4 seizure meds now} Jason came home from work because he was to worried to stay. They are worried that something is going on in sweet little Bubba's brain that is triggering this new and hard form of seizures. To say that we are scared would be an understatement. Tonight another ray of sunshine came in the form of a friend that came to help Jason give Bubba a blessing. Another ray of sunshine in these hard days are you my friends. So, this is where I need you. Please pray for my little boy, pray for his body to get the rest it needs to recover and that when he comes out of this there will not be any long term damage. My last and final ray of sunshine today is the love and support that I feel from my Heavenly Father even in the hardest of moments, I am never alone.

Saying good bye to a good friend {prayers needed}

Saying Good Bye is so hard to do.

Tomorrow Bubba will be going into surgery.....

 surgery number 13 to be exact.

In this surgery they will remove toobie and put a button in it's place.

This is the second step to one of his last surgeries.

Regan felt it only appropriate that we paid

 tribute to Bubba's special friend toobie and have a good bye party.

How can you even begin to tell someone so special in your life Good bye. :)

wink!

I can't believe that it has already been three months since Toobie came into our lives.

What has been the hardest part???....

Well, this....(look above) Ol' toobie always wanted to sneak out and be a part of everything.

I had to worry about Bubba crawling and ripping it out of his stomach with his knees.

Yes, no fun BUT it made for funny and most likely inappropriat jokes like..

"Hey Bubba just wanted to show the girls how long his Toobie realy is!"

wink!

Regan had us all write good bye notes to Toobie and then we put them up on the wall.

There just aren't words to describe how hard this loss is for our family.... wink!!!!

In all seriousness I want to ask you all for you prayers for our sweet Bubba.

We have complete faith in his team of surgeons and know that everything will go well.

(His team just isn't as cute as the our little surgeon above.. wink!)

I will keep you all updated on our little Hero!