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!