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!

Connor's Surgery

Many people have asked me what Connors surgery will be like. When Dr. Woo came in and told Andrew and I that Connor was going to have to have surgery I was not expecting what he told us. He started off by saying we are going to make a zig zag cut from ear to ear. That is when I stopped. I could not listen anymore. The only thing I focused on was Connor sleeping on me. Everyday since his surgery I have just been rubbing and kissing his blonde-almost white hair. They are going to have to shave it for the surgery. That is not how I pictured his first haircut going at all.

This next paragraph may be a bit graphic so if you don't want to read it, I don't blame you. After hearing news of the diagnosis being confirmed I somewhat blacked out so I am going to have Andrew type the rest, I believe it was my brains way of coping.

The surgery will consist of the team cutting his scalp from ear to ear over the top of his head in a zig zag pattern kind of like a head band. They use a zig zag pattern to minimize any blatant visible scaring once the hair returns (amazing the difference in comparison photos). Once the incision is made his skull is exposed from the mid crown and his scalp is then rolled back towards his neck so the team can have full access to the entire back of his skull. With careful cutting and a close watch from the neurosurgeon, Dr. Woo will remove the back of his skull completely. From that point he will manipulate the shape by re opening the bone fusion and carefully separating the skull into multiple pieces, it is then all re-attached by means of tiny plates and screws that can dissolve throughout the healing process (we had no idea that stuff existed!). His head will be reconstructed entirely in the back in what is termed a TCVR or total cranial vault reconstruction and the entire process can take anywhere from 3-5 hours permitting there are no complications throughout the surgery. We have the upmost confidence in this team as they are ranked 2nd in the nation behind Boston. The specialist team has performed over 500 cases with similar surgery all without any major complications, and no children with extended recovery time. Post-op he will be in the PICU for at least 24 hours, his head will swell considerably to the point where he may be nearly unrecognizable. He will then need to be transferred to recovery for the remainder of our visit where we will be educated on pain management and wound care. It will be the start of a tough road for our little guy but hopefully with a little luck and alot of prayer it will be the beginning of an end for his cranial issues!!

So that is how his surgery will go. I have been having bad dreams and just feeling nauseous with worry.  I've been keeping myself busy with things like cleaning, working out and laundry, when Connor is sleeping. When Connor is awake we play. Since we have had nice weather we have been outside, Connor LOVES being outside! I think my neighbors think I am nuts because I carry Connor on my hip down the street, because he hates his stroller! So I carry him and its fun for him and a workout for me! :) The thought of the worst that could happen has crossed my mind more than once. I know that I should not think like that, but I cant help it. The last few nights Connor has woken up upset, I have been rocking him back to sleep and rubbing his head, because I know that in a few weeks its not going to be that easy. I am most worried about bringing him back home. He is really on the move now and just wants to climb and he bumps his head on everything!  Andrew is taking a week and a half off work, I am so thankful for that. I know its not going to be easy, but with him home it will help so much!

Thank you again to everyone with all of the prayers and support and donations. I can't even explain how happy it makes me!

Connor is officially walking!

Staying Positive!

Tuckered out after playing at Mike & Brits!

It has been a week since we found out about Connors diagnosis. A week of worrying and a week that I am forgetting everything. The only thing on my mind is Connor and his surgery. A stressful week, there will be times that I am completely fine and then times where I just break down and cry. I know that he is going to be OK, but I can't help but think, "What if?" I have been researching a lot out his condition. Sometimes I have to stop because I feel like I am going to have an anxiety attack. I know that every child is different and every surgery is different, but still it scares me to death.  A lot of things that I have read say that this condition is genetic, but neither Andrew or I have anyone in our family with this. It is just something that happened.  I also have found that if you have one child with this condition, the chances of having another baby with this are 50/50. Most of you know my love for children, this is very heartbreaking for me. I don't think that I can go through all of this again. Even though it might not happen, I just do not think I will be able to handle it. I have gone through the anger stage, not really angry screaming just angry that this is happening. I have gone through the guilt stage, thinking that I did something wrong and that this is somehow my fault and I have/still am in the sad phase where I just cry and worry. And think about the bad. But I have been trying to remind myself of the positive-We are lucky we found out now, we are blessed to be in such a great hospital and we are so thankful for Mike and Brittany for saying something, I seriously will be thanking them for the rest of my life!!

I am so grateful for our friends and family that are throwing the benefit for Connor. It makes me so happy to know that we have such wonderful people supporting us. I want to thank everyone for the messages, texts, phone calls, donations and letters in the mail. It means so much to me, I cant even explain it. Last night my sister and my mom went to Staples to print off the flyers for Connors benefit, a man paid for all of them. That made me feel SO GOOD. Today I went and picked them up, the lady at the counter brought them too me and had tears in her eyes, when she handed them too me she started to cry. Then I started to cry. She told me how sorry she was and that she has a two year old and she doesn't know what she would do if she was in my shoes. She kept telling me how sweet and happy Connor was and told him to be strong for his Mommy! Connor just smiled at her and waved as we walked out the door. Little things like that make me feel better. I know I am not alone. I know that we have a huge support system behind us.

As for now we are enjoying every moment we have with Connor pre- surgery. He is really starting to walk now, its going to be hard to stop him from climbing on things after the surgery. I want to wrap him in bubble wrap!

Thank you for all of the prayers and continued support!!

Until next time!
Katie :)

<3 

Outside fun!

:)

A Little Background

Hi All! I just wanted a place to write my thoughts down about what is going on in our lives. I will start from the beginning- the shortened version. After Connor was born Andrew & I both noticed a large bulge on the side of his ear. We asked the Doctor about it and she told us that it was just an enlarged mastoid bone- OK nothing to be worried about. Upon leaving the hospital Connor failed his hearing test in his right ear. We went back a month later and it was confirmed that he is deaf in his right ear.We later learned after a scan that his cochlea is missing coils.  We were told that since he is deaf in one ear that is why his mastoid bone sticks out. Hard to swallow at first but his left ear is perfect and he will not and has not had any problems so far. He hears things and babbles and dances to music.

----------Next case. 

While Connor was in the NICU Andrew & I both noticed that he would not turn his head to the right. We literally tried EVERYTHING. So after talking to his doctor she referred us to physical therapy. There it was confirmed that he had severe torticollis. In short torticollis is stiffening of the neck. We are unsure how he got this. I have researched and researched. I have read that it can be from how he was positioned in uterus, (I was 10 days late with Connor, so I think that was the case) it can be from a trauma labor (I would not progress past a 5 and had to have an emergency c-section, so that could be it too), I also have found that it could be caused to how he was pulled out of me during my c-section. Or it could be anything. We have been going to therapy since he was 2 months and have seen SO much progress. He has much better range of motion, but it is something that he will always have to deal with. I can really notice his tilt when he is sick or teething or is tired. It's just his comfy spot. But we have came a long way from where we were! 

-------Next Case

Since Connor has torticollis and preferred one side to lay on, he developed a flat spot. The official diagnosis for his head was called positional plagiocephaly so we made the decision to get him a helmet to help correct this. While he was in his helmet we still went to therapy for his neck. After he got his helmet off in January his head looked great! Until….

-------Next Case

Fast forward to the last few days in April. Andrew noticed his head was starting to look funny. I told him that because of his torticollis his head will look funny until he straightens out (thats what I have been told by multiple doctors and therapists.) He said OK and went on. Some great friends of ours mentioned to Andrew that his head looks funky and we need to do something about it. Andrew and I called the clinic that did his helmet. We had an appointment on Tuesday, April 29 and his orthotist confirmed that his head has grown 3mm to the left, and only 1mm to the right. So we discussed another helmet. Back to the great friends we have,they had an appointment at Children's Hospital in St. Louis on Wednesday, April 30, they showed their Nurse a picture of Connor and asked her opinion. She said that she would like to see us ASAP. So Andrew and I got an appointment for Connor the next day, May 1. 

That brings me to the journey we are about to embark on. When we arrived we got X-rays right away. Connor did great and was very well behaved! The nurse practitioner came in and told us that she would like us to get a CT scan because she thinks that one of Connors sutures in his skull had fused prematurely. At this point I am worried and scared and Connor is cranky and Andrew and I are worried that he is not going to do well with the CT scan and we would have to come back another day to get answers. Thankfully, Connor behaved during the CT scan. There were lots of tears for 30 seconds, but after it was over he was all smiles! 

The CT scan confirmed that Connor has Lambdoid Synostosis. Lambdoid Synostosis is very rare. Research suggests that is happens in less than every 1 in 300,000 live births. Lambdoid Synostosis is when the Lambdoid suture in the rear of the skull has closed (fused) prematurely. This causes the growth of the skull and brain to overcompensate for lost movement, and shift the back of the skull to one side. Resulting in a sweeping deformity of the overall head shape. The normal age for the closure of this suture is 26. This further explains why Connors head has grown 3mm in one direction. Remember the mastoid bone I mentioned earlier? One of the sure signs of Lambdoid Synostosis is an overgrowth of a mastoid bone. It was frustrating at first to find all this out, as if we were blown off knowing full well something else was wrong. His neurosurgeon reiterated the fact that due to Connors other issues (neck and ear) his health had set up physicians to missdiagnose the root cause of his head shape.

This is what Connor's Skull looks like.

This is the normal Skull of a newborn.

Since we know all of this now we are facing it head on. Connor will have surgery on June 5. I have confidence in Dr. Woo (the plastic surgeon) and Dr. Smyth (the neurologist). I know that St. Louis Children's Hospital is one of the best in the country. We are so fortunate enough to have caught this early. I can't thank Brittany and Mike enough for speaking up and talking to their team about us. Without that, who knows what would have happened down the road.

Thank you all for reading, we will need lots of prayers! I will continue to update this blog as things progress during the next month and through Connor's surgery.

I stumbled across a quote today that helped me…."Meet today's problems with today's strength. Don't start tackling tomorrow's problems until tomorrow. You do not have tomorrow's strength yet. You simply have enough for today."

Until next time!
Katie :)

Connor was so tired after his CT scan he fell asleep on Andrew!

Connor really enjoyed his own little chair and the game on the wall! 

Waiting to meet with Dr. Smyth!