Good News!

Connor had a check up on Wednesday! We went down Tuesday and went to The Magic House! We all had such a good time!! His appointment went great! He is healing the way they want him too and they have no concerns! We are scheduled to go back in a year!! We also talked to the doctors about Connor's torticollis. They told us that since his case is so severe that the next best thing to do would be surgery to release the muscle- but even that is not 100% effective. So we are going to start physical therapy again and hope that it will keep improving! Thank you to everyone for the continued prayers and support!! I finally feel relieved and at peace! I will leave you with some pictures!! 

Until Next time! 

Katie 

Fun at the Magic House! 

See you in a year St. Louis! 

Home!

Getting ready to leave the hospital!

We arrived home Sunday afternoon! Connor slept most of the ride home. He did so well with the drive home! I was worried about him being in the car seat for that long! But we didn't hear a peep from him! Once we got home we unloaded eveything showered and we all took a 4 hour nap! It was much needed! Connor has been sleeping a lot and wants to cuddle. He sure has an appetite though since we have been home! Makes this momma so happy!! He has only woken up once every night since we have been home. I am checking on him constantly! He only use to take a 1.5 he nap in the afternoons and yesterday and today he has slept for 3 hours!! I know it is just his body's way of healing. He fusses when we have to change his diaper since we have to lay him on his back but other than that he has been ok! I am thankful (now) that he has always been a stomach sleeper! He has not tried to climb on the couch, stand in the cabinets or hang on the stove like he usually does. I think he knows he has to be careful!! I am so thankful that Andrew is able to be off work! I know that I would be full of stress and anxiety if I was home alone with him! We go back in two weeks for a follow up visit! I am looking forward to seeing what the doctors have to say! I will leave you all with some pictures from the last few days! His swelling has gone down so much! I was also expecting him to swell much worse! Thank you everyone for the continued thoughts and prayers!! 

Until next time! 

Katie 

Laken came to visit us! 

Happy to be home! 

Playing with Papa! 

Connors first time eating corn on the cob!

Amazing the difference! 

Recovery update!

Yesterday Connor was amazing!! It was surreal to see him acting completely normal so soon! When we moved into recovery he was walking and talking! Dr. Smyth came in and was amazed at how well he was doing even! Last night was a little rough for us all. Connor does not want to be laid down on his back at all at this point as the swelling and head pressure seem to be unbearable for him. He slept on me the whole night tho which of course I didn't mind, I love holding him! I was able to get a big bed so we don't have to sleep on a chair. Last night he would cry if I moved even the slightest, needless to say my back didn't appreciate it. Whenever I would finally fall asleep a nurse would come In to give him meds or check his vitals. Andrew and I were able to get a nice nap in today while Connor slept though. Most of today he had just slept, with anesthesia completely gone I think his body went into recovery mode. He will wake up for a while and we will read or look out the window. But then he'd tire quickly and immediately fall asleep on Andrew or I.  His face is swollen a little more but they have reassured us that it's all normal! We are scheduled a CT in the morning and afterwards if all is well......(drumroll) we are discharged! Can you believe it, his skull was removed, broken, and put back together in a different way just days ago. The advances of modern medicine practice is just awesome!!

Until next time! 

Katie

Looking out the window! 

Beginning down that long recovery road

                  The start of a new.

      Hey readers. It's Andrew this time. Katie is contently holding Connor as he prefers (she does too) being held right now. As you can imagine surgery is now complete  and he's fairly stable in the PICU now. The day surely didn't start to well as you may know from the previous post but as it went on more developed for us and it began to change. We eventually and gratefully recieved a private room where we could quietly wait in peace. We were greeted by his specialists one by one as they completed their agenda during his surgery. Dr. Smyth (neruo) came in and told us everything went beautifully and that his brain looked wonderful....say again!? It's not every day we get casual compliments on our sons brain appearance. But hey, thanks doc!! Shortly after Dr. Woo (plastics) came to visit and informed us that surgery was nearly complete and they were finishing up his incision sutures. He said the entire procedure had gone very smooth although he believed that Connors head shape was the most dramatic repair he's ever attempted. His tone had a boastful nature to it which meant he was proud of the work he had just completed!! I can dig it. We even had a research specialist talk to us about a tiny skull fragment that was not used during reconstruction. A research team in Seattle is studying the effects of synostosis and looking for anomalies to possibly detect whether this is genetic or try finding markers to look for in future patients. Apparently in the last three years of collecting samples his tissue is the first case of lambdoid they've recieved, we gladly donated it for research. We were soon brought back to recovery and followed him to his PICU room. Our initial peak at him was frightening as he vomited due to anesthesia and didn't sound like himself (we were warned ahead of time). His incision looks almost fake it's so perfect and the swelling is just beginning to start. One of the first things we noticed was his smell was gone, our baby boy who's swollen cheeks recieved many kisses smelled of hospital and nearly made Katie sick. We stepped away after a few hours to gather our thoughts and try to eat and upon return we see his nurse Allie holding him in her arms. I told you he's getting great care ;) ...and so here we are, waiting, rocking, just trying to ease pain the best way a parent knows how. With love. The whole day seemed surreal, as if your watching a movie that doesn't end, waiting for that commercial break that never comes. He's so very strong and his head looks wonderful I just couldn't be more proud of the two of them! The road were on is long and slow but his nurses already call him a little tiger. 

           In recovery about an hour

              His incision is incredible 

Just wanting to snuggle. My little man is             quite the fighter! Were all exhausted. Tomorrow brings a whole new day of learning and change so time for rest. Thanks everybody. Andrew, Katie and of course Connor!!!

Surgery Update

Good morning, well Connor slept through the night last night thankfully! We arrived at the hospital on time and got all checked in. We met with his doctors and he flirted with the nurses, they told us what would be happening. Shortly after admitting they had given Connor some medicine and it really made him loopy! Once he began to get tired as the medicine took effect and they quickly whisked him away to begin everything. Andrew and I went and got breakfast at the cafeteria briefly. When we made it back up to the waiting room where other parents sat quietly, we were told that we would have our own private room to wait while Connor is in surgery, considering it will be a 4 hour surgery we were eager to settle in for the long haul. Well.....not quite....when we asked where our room would be we were told that they were all given away and that we would be waiting in the open area amoungst the other parents. I immediately broke down. I just was expecting to have a place to shut the door and relax, I am understanding of the idea that all these parents have children here facing an issue today but as I watch them come and go while I remain in my plastic chair it's hard to keep it together. We sat at the end of the room by a window and looked outside. I looked up and saw Dr. Woo, Connors surgeon looking for us, but by time I could catch him it was too late! Andrew and I asked the recipetionist if she could get any info for us as it had been an hour since they had taken him back. We got a pager and gave the front desk our cell numbers so we could just walk around. We recived an update at 9 and were able to talk to Dr. Woo which made me feel so much better. Connor did just fine falling asleep they were having problems getting his IVs in. As of 10:02 he has recieved his incision, is fully sedated and they are doing surgery now! Thanks to everyone for the prayers and texts!! So far he's doing beautifully!!!

The Day Before

Connor and Andrew at Lunch today! 

Today we left around Connors morning nap time so he could sleep in the car. We arrived at the hotel around 1 and ate lunch. We went to the zoo and rode the train! It got really hot after the train ride and Connor was getting tired so we decided to go back to the hotel so he could nap. But not before we stopped in the gift shop! He picked out a stuffed monkey all by himself! While Connor took a nap I went to yoga. There is a yoga studio steps away from our hotel. It was EXACTLY what I needed! I was thrilled when I called and they said that I could just attend class! I felt so much better and I was able to relax and reflect. All day I've just been rubbing his sweet head.I know tomorrow is going to be so tough but we have so many prayers and support behind us! I will keep everyone updated as well as I can! We will be up bright and early to get our day started! I will leave you all with some pictures of our day! Connor is falling asleep right now hopefully he sleeps through the night! Thank you everyone  for your thoughts and prayers! 

Until next time 

Katie 

Hanging out on the train! He wasn't too sure about it! 

Next picture we take of the back of his head is going to look way different!! 

Goodnight from Connor! 

Memorial Weekend

Andrew had matching sock monkey hats made!

Sunday our amazing friends and family threw a benefit for Connor at Sliderz Bar here in town. Sunday morning I woke up before everyone else and woke up and prayed. It was such a peaceful morning. Andrew and I decided to get family pictures taken before Connor had his surgery. Valerie Cook did an awesome job and I am in love with all of them!!

 We had a great weekend with Andrew being off. I am thankful that he was off this weekend so we had one last "normal" weekend before Connor has his surgery. The benefit was amazing. Thank you to everyone who came and donated in some way. I got to see so many people! My friend Devin came with his little boy.We have not seen each other since we graduated from Lincoln in 2010! His little boy and Connor had so much fun playing together! In times like these I have really seen the good in people and people do care!  Special thanks to Lacey, Megan and my sister, Jennifer for putting it all together! It was more than Andrew and I could have imagined! We both came home and cried because of how wonderful it was and how blessed we are to have so many people care and want to help! 

We took Connor to the pool on Monday! He loved it so much! He is a natural fish! This weekend we really just relaxed and hung out together, I couldn't have asked for anything more! 

A week from today we will be headed to St. Louis for Connors surgery. We are going to leave around nap time so when we get there Connor will be rested! We are planning on going to the zoo and just have one last fun day together before his surgery! As time gets closer I am getting more anxious. The worst for me is that Connor has no idea what is going to happen. I also have so many fears of what could go wrong.  They are going to take him and he's going to be fine then he's going to be in pain. But I keep reminding myself that we are in the best care and everything is going to be ok! I have been praying and we have so many prayers and good vibes coming our way I can feel them! Thank you all for everything! 

I will leave you all with a few pictures from our weekend! 

Until next time! 

Katie 

Pool fun!

Love them!

Forever friends!

We love Lacey!!

My favorite!