Sleepy Bug.....

Happy Cinco de Mayo!!!!! I have always loved this day as it is a good excuse to make a great mexican fiesta for dinner. Not the case this year. Randy and I did enjoy a good taco salad for lunch in the cafeteria though, so all was not lost.

Connor was Mr. Sleepy Bug today. They told us that one of the initial side effects of his new anti-seizure medication would be sleepiness. I guess they were right!! He slept most of the day today and he was on the c-pap the majority of the time as well. For some reason he couldn't keep his oxygen levels up where they need to be on his own, so they felt it best to go back to the c-pap for the time being. He had one episode this morning and the docs decided to start giving him small, scheduled doses of Ativan to try to stay on top of these outbursts of pain. Thankfully we have gotten the docs to admit they believe it's pain. So tomorrow is another day and we will hope for increased progress for Little Bug.

Daddy went back home today to mow the lawn and get the house in order. He will leave again on Tuesday for his next "stage" in sandland with his squadron out at McChord AFB. We always hate to see him go, but he is so faithful to be available for trips that he needs to make for his squadron. Randy is such a hard worker and we are so blessed that he is taking such good care of everything while Connor and I are not able to be home. Thanks honey for being such an excellent team player. You and Abbey have fun tonight at home and know that we miss you and love you!!!! Hey, by the way we also want to say thank you to our wonderful neighbors and family that have stepped up and agreed to help out with Abbey while we are here at Children's and while Randy is gone on his trips. Thanks so much for lessening this load for us right now. We owe you all a big thank you. And hey, how 'bout this, let's do a big cook out when we all get home to say thanks for watching Abbey!!!! That's a great idea...Hhhhhmmmm, I can already taste the burgers and dogs off the grill!!!

Wasn't it a beautiful day today?? Grandpa and Grandma M. came for an afternoon visit and it was so nice to have a visit and watch the wind blowing through the trees outside of Connor's window. After they left, I went for a short drive down to Matthew's Beach. I walked around for a while and took in the fresh, clean air and took advantage of a warm evening. How I prayed for Connor durning that walk and asked the Lord to give us another warm day soon that Randy & I could stroll together with Connor in our arms. It is always a reflective time for me when I get to be outdoors. Don't you ever wonder what it must have been like to be present at the moment of creation when God was creating plants, trees, animals, bugs, landscapes and so on. We have the most creative, amazing Heavenly Father. He knew from the beginning of time that His people would need beauty to surround them and that that very beauty would bring them closer to Him. I just think that's delightful that God thought of us in that way and had us in the palm of His hand from the very beginning of the world. Although my mind is skewed with doubts and fears at the current moment regarding Connor and his future, I know that the Lord of all creation sees me, and holds me and provides for my every need. Thank you Lord for your beautiful, spectacular love for me. Thank you for showering me with your daily grace and mercy. How very lost I would be without your guiding hand and loving touch. The wonder of your love is amazing and I am forever changed because of the way you care for me. Thank you for holding Randy and I and Little Bug close to your heart. Cradle us in your grip this evening I pray and give us new strength when we wake up tomorrow.

Goodnight and Lovebug Hugs,
Lori

Mama's Intuition Wins!!!!!

This morning started out with the news from the docs that, "Connor looks great....we're taking his central line out and we're sending him to the floor today!" When I called down to the room and Randy gave me that news, my initial reaction was....WHAT?????????????? I had a significant gutt feeling that today was not the day to be moving Connor. I rushed to get dressed and get down to his room to speak with the "team" about their decision. I told them that I didn't feel good about the decision and that Connor needed to prove himself for a longer period of time in our estimation. The docs re-evaluated and said they would spend one more day watching him. Sure enough after a great morning and snuggling with Auntie Teresa and Grandma R., Little Bug went balistic!!! He freaked out for about 3 hours and after 2 doses of Morphine and Ativan he finally started to mellow, but only for short periods of time. His temp shot up to over 103 and they had to do the routine blood draws. This became difficult because they had removed his blood draw IV line earlier in the day, so he got multiple pokes in the arm and head. I think we scared Grandma R. right out of the room. Little bugs heart rate escalated to 202. His respirations went sky high as well and he ended up back on c-pap. Just now about 8:30 his temp is coming down and his numbers are looking better. Whew.....what an afternoon. When the docs came in they said, "Boy, I'm glad we didn't send him to the floor today!" I guess Mom's really do know what's best. Even Randy agreed that this was the best decision.

We didn't find out anything new today regarding the seizures. They hope that the new medication they started him on will stop the seizures. We didn't see any evidence of them today so we are grateful that the meds are working on his behalf.

This afternoon took a lot out of Connor and he looks wiped out. If there is a consolation to be seen in any of this, it would be nurse Amy!!!! Oh my how we love nurse Amy. We occasionally "catch" her kissing on Little Bug and loving on him in the most adoring ways. When she touches him she touches him with love and care and skill all at the same time. If we could hire her to be our full time nurse we would!!!! Go nurse Amy!!! She agreed with our concerns for Connor that his belly seems to be hurting him. Together we discussed that maybe he's getting too many calories in efforts to fatten him up and maybe it's causing him distress. We will be re-evaluating this very subject with the dietician tomorrow. At the moment his feeds have been stopped and he is getting IV fluids so that he doesn't get dehydrated.

I forgot to mention in yesterday's blog that they moved us again. Yep, that's right. We made move number 12 yesterday after Connor's EEG. I think we must be on the "stay in every room plan" here at Children's. It's actually becoming a bit of a joke around here that we need to wear roller skates because you never know when were moving next. I guess we are learning flexibility in more ways than one.

Yesterday was also a particularly hard day because the Lord saw fit to call another sweet baby into his loving care in Heaven. Little Jackson Stone passed away yesterday afternoon and our hearts greive with Paul and Tiffani, his parents, as they find some way to say goodbye to their precious son. Please pray for this dear sweet family in their loss. Baby Michael is also still fighting and his parents are such troopers. They need continued strength to make decesions and plans for their little miracle as well. How we all need a special touch from our Lord and grace to make it through each moment of every day. Your continued prayers on our behalf are upholding us and lifting us up daily. We feel strength because we know you are praying. Thank you for being the army of God on our behalf.

Goodnight and Lovebug Hugs,
Randy & Lori and Little Bug

For Heaven's Sake, What's Next??

Today came and went with news we did not want to hear. The neurologist confirmed that indeed Connor has some abnormal brain wave activity at the top of his brain in the area called the Vertex. It is probable that this abnormality could cause seizures, but it is not confirmed. We were crushed with this news today as we had so hoped that they would find nothing wrong in Little Bugs brain. They said that the probability of brain damage from these seizures or seizure activity is not likely (Praise the Lord!). They are putting him on another new medication to stop the seizures until he undergoes his open heart surgery. After that time they will try to wean him off the medication and see if the seizures return. If they do, he will be treated with medication, and if they do not return then it is likely that they were not recurrent and they just happened as an isolated event. We will never know the cause of this nor will we know when they started. All we do know is that Little Bug needs our prayers so that he can be free from this seizure activity and be free from another medication. I will try to post more info tomorrow about the progress we are making in other areas. Enjoy the pics we have posted below (there's a lot of them) and once again we thank you from the bottom of our hearts for your prayers and love.

Goodnight and Lovebug Hugs,
Randy and Lori

Pictures From Today's EEG

Hey Guys, what's going on around here???? I've got probes all over my head and I'm wrapped up like I had my wisdom teeth pulled....Hey, I don't even have wisdom teeth!!!



Ok, everything's set up and ready to go....


Wow, is that really my brain being measured???? I knew I had a lot of stuff going on up there, and this just proves it......take a look at all those measurements.


During my EEG this morning I took a little nap with my binki.


How can a bug be so cute and have to undergo so many tests......But hey, look at great my color coordination is!!! Thanks to mama, my blanket matches all my new wires!!!

I'm bored....time to go home....PLEASE!!!!! Call the nurse, have her unhook me from all these wires and tubes 'cause I'm gettin' outta here!!!! Man I wish I had that much power!!!

Here's your Little Bug Fix....Yup, that's right, more pictures!! Enjoy!!

Hey guys, how do you like my new do????


Hey guys look, I'm getting better at keeping my binki in all by myself....oops, I dropped it!!


Me and my binki, what a great combination!!!!


Mama's so good about giving me blow-by oxygen!!!! But daddy says, "Hey, get that big blue snake out of my nose!"


Pucker up....here comes a big kiss!!! So 'cmon, let's be real honest here, I really am the cutest little bug in the whole wide world, right?????


Look at me, I'm a little slugger!!! My Great Uncle Randy would be very proud to see me in a baseball outfit. He gave me my very first mit. I can hardly wait to use it.


Little bug and daddy snuggling with Connor's new bumble bee!!


Unlce Gary and Aunt Lynette with cousins, Zachary, Lucas & Savannah on Sunday. Hey guys, have fun in Florida. When you see Mickey and Minnie tell them I will come meet them when I feel better.


Little bug sleeping soundly with ladybug and bumblebee watching over him. Hey, if you look really close you can see Herman peeking out from underneath the covers. Be careful though, if you blink, he will be gone.


Here's Connor with Daddy telling him to straighten up and get better soon.

Special Request For Connor!!!

Ok, enough is enough!!! Today we were told that this new breathing "thing" isn't related to his breathing at all. Apparently they think it could be siezure activity. The neurologist met with me today and explained that they will be doing a EEG Tuesday AM and if they see any abnormal activity, they will order a full MRI of his brain to check it out in more detail. This is terribly concerning to us and we are asking for specific prayer in this area. How we are trusting in the Lord that they will find nothing abnormal in Little Bugs brain. We're not sure what time the EEG will take place, but we do know it will be sometime in the morning. I will update as soon as I can with results or information.

Oh Lord, Hear our prayer regarding this new issue for Connor. We know that nothing happens in our lives that hasn't first filtered through your hands. Please give us understanding and insight regarding what the doctors think is seizure activity. We come against this insult in Jesus name and we pray for your sweet mercy and care to rest upon Connor this evening. Please Lord bring healing to his tiny little body and bless his life with good health in your timing we pray. Help Randy and I to sense your presence and to know your will. Give us peace and guard our minds from fear. We trust you Lord, even now in the mindst of our questioning!!! Amen!!

Lovebug Hugs,
Lori

Miracle for Michael!!!

Thanks for your comments and prayers regarding our little buddy Michael. Yesterday was a difficult day for his family as they prepared to say goodbye to him. Miraculously last night, his kidneys began to function and as of this moment, he is still here fighting for his little life. Please continue to pray for him and his family and thank the Lord for this most spectacular miracle.

Lovebug Hugs,
Lori

On the move again!!!!

Over the weekend, Connor had a couple of positive days. No fevers to speak of so that was a definite victory!!! Way to go Connor!!!!! Today we were on the move again. Yes, that's right, room number 11 for us here at Children's. We at least have a nice window view and that reminds us that there is a world outside of these walls. It's nice to see the wind blowing through the trees and the sunshine and blue skies are welcome vistors in our room.

It looked like Little Bug was going to have a good day today, but it ends up he is doing another breathing "thing" that has the docs worried again. Apparently, it looks like he's gasping for breaths and his airway is tight. We're not quite sure what the ramifications are to this, but it forced him back on the c-pap this afternoon. The steroids have been in his system for 24 hours now so it will be interesting to see what the X-ray shows tomorrow. His IV line has ceased to work today to draw blood, so they have had to resort to more heel, hand, finger, leg, toe and head pokes! Ugghhh, can't this little bug get a break somewhere????? To make a clearer explanation of his breathing "thing", it's like when you cry too hard and you breath in fast many times to just catch your breath again. The attending doc tonight said that more than likely, he is just not ready to support himself without the help of the c-pap. I have other feelings concerning this because this is the first time he's ever done this particular thing. I really don't think there are ever easy explanations to Connor's episodes and I hope we can get more to the bottom of things tomorrow.

Our hearts are saddened today for a family that we have come to love. They had to make a very difficult decision concerning their son earlier today and we are grieving with them as they say goodbye to their precious son. I will probably be able to write more tomorrow, but for today, my heart is in a very quiet place.

Lovebug Hugs,
Lori