Four Months already!!

(Connor lost his first tooth while at PT a week ago!) 

So tomorrow, Aug 2, will mark 4 long yet short months being in the Fixator. Since last update there has been a lot of ups and downs and "I'm bored!" 

It has been a good summer but Macie and Brenden are missing Connor and myself an aweful lot. They go 3 days a week to either GiGis or mawmaws while Connor and I head off to PT. Connor has 'graduated' from the wheelchair to walker to crutches to NOTHING! Yes that's right Connor is walking unassisted! He has been working so hard gaining muscle strength back and relearning how to walk without support. 

So 3 weeks ago Connor had a dr appointment which went very well. The dr started the process of getting him prepard for getting the frame off by removing 1 of 3 support rods that replaced the struts we were turning. He removed the inside bar and the last 3 weeks Connor has been walking around putting so much weight on his leg. 

I had a little mom getaway with my mom and sister at my aunts lake house and dad was home with the kiddos. Andy had the kids doing all sorts of fun things and totally forgot to so his stretches that weekend. It's been a little difficult getting those muscles loose again but nonetheless Connor is getting them stronger everyday. I'm just so glad the kids got good quality time with daddy! 

We have done some fun things and even did some cake hunting like I promised! We have spent at least one day a week swimming and have been trying to enjoy the beautiful summer weather we have been getting here in STL. 

Summer is winding down for the boys. They got their school papers in the mail last week and got all their school supplies. Brenden is going into 3rd Grade and Connor into 1st!! It's surreal how fast they are growing up. I spent last week speaking with the buses to get Connor set up and will speak with his teachers next week to figure out when the best time of the day is to take him to PT. I had to wait to speak with Dr Gordon today so we know how Connors leg was looking.

So today was dr visit with Dr Gordon. We did X-rays and PT. Dr is thrilled with how well Connor is doing so he took out bar 2 of 3 to help get Connor ready for when the Fixator comes off on August 20th! YES YOU READ THAT RIGHT THE FIXATOR IS COMING OFF AUGIST 20TH!!! We are so amazed by Connor and so is dr Gordon. He surpassed his expectations!! We will still be doing PT 3x a week but the bone is healed and the dr is ready to have it removed once Connor walks for a few weeks with just the 1 support bar. This is because dr doesn't want to go from 100% support on the leg to nothing that is why they are weaning him from the 3 bars down to the 1 next with the Fixator removal!! As difficult as this has been on all of us it's been pretty smooth sailing. We were diligent with pin site care and only needed to do antibiotics for "iffy" looking sites 2 times. The extra break is something dr Gordon said he won't address until his final femur lengthening unless something else arises with it so we are talking a good few years from now on that. 

(The pic above is the last 2 X-rays, on the left is from July 7, and on the right is today's! Notice how strong the bone is today from just 3 weeks ago!)

I am so blown away by all this! Connors strength and determination and being totally taken off guard when dr said let's set a date for 3 weeks to take it off!! Connor still has a long road ahead with PT but he did it!! I  am so proud of him!! 

Hot Summer Days!!

Summer vacation is going well!! Kids are having fun and keeping very busy! So blessed to have great friends who let us swim at their house as much as we like, although with how busy we are we are lucky to make it once a week. 

Connor has turned a huge corner. I did not believe the nurse and physical therapist that it would get easier after we finish turning. Well I was proven wrong! We have decreased the amount of pain meds Connor gets to just before PT and stretches. We are beginning to taper off the Neurontin, this is not a med the dr said we can just stop we need to take him off slowly. 

Physical therapy has improved dramatically. He still gets some pain and discomfort while bending his knee but no where near the pain it was. Our happy fun loving Connor is back!!! Smiles all the time and telling everyone about how excited he is to have his fixinator and make his little leg big. He does not remember those really bad days and I thank God for that everyday!! Connor uses his crutches mainly but is even walking around the house without anything!! He is beginning to remove the knee stabilizing bar at PT and walking without it. It is a challenge for him but he will be walking without that as well before we know it. Connor walks on the treadmill and does the wii fit board at PT. He has come such a long way and I am so incredibly proud of him!! 

Some of the summer fun we have had is a lot of time with GG at aunt Laurie's swimming. And time playing with Mawmaw. But we have also had lots of Brenden baseball games and seen some movies. I plan on trying to see some of the 250 STL cakes also.

We are excited to be meeting a lot of PFFD families this weekend at the first Midwest PFFD picnic. Hopefully we can help answer questions for families trying to make the best decisions for their child and for Connor to meet kids who are all special just like him!! 

As far as his bone looks we did X-rays and everything looks great and right on track. I did not ask when the frame will come off, I don't want to rush because this takes time. So we just take things one at a time and are trying to make this a fun summer vacation. 

Hope this post finds you all well and enjoying the summer! 

Finally, Summer Vacation

It is finally summer vacation is here!! After the never ending school year things are going to calm down just a bit. Don't have to rush to get kids on the bus and remembering what day to tell the bus driver to bring him home or not bring him home! It's a little sad to say that we have a 3rd Grader and 1st Grader!! Where does the time go?!

Onto lengthening news. We stopped turning on May 28. Connor has gotten 2" of new bone growth. From here on out he is in consolidation mode. We could have gotten another 1/2" but we decided that because of the bonus break we didn't want to put even more stress on the bone. We are very happy with the 2"! He got the struts removed and just 3 bars in its place. Connor was nervous about this but as his nurse said "this is one step closer to getting the fixinator off!" We still have a few months to go. We are shooting for October. It would be great if it was a Birthday present and it came off in September but if he can get it off before Halloween he can be Ironman Connor for Halloween without having to cut up his costume! We are continuing to do PT 3x a week. His nurse and physical therapist did say that since we are done turning the stretches should get a bit easier, we will see. From those I have talked to who have already been through this seem to have said otherwise but every child is different. To help with PT we are now rewarding Connor; if he goes 3 sessions without screaming too loud and being nice and not showing signs of aggression he gets stickers on his chart and then he gets a toy! This has worked well. So far he's gotten a toy plane from the movie Planes and a TMNT game. Connor has graduated from a walker to crutches and is even walking around the house from time to time without ANYTHING!! His bonus break is healing but we will need to address it after the Fixator is off; our focus right now is the bone growth and consolidation. 

As for this summer goes, we plan on swimming a lot at aunt Laurie and uncle johns house as long as their pool is free. I hope to take them to do some things around St. Louis like a trip to Ted Drews, they have never had yet!! Maybe science center, zoo, arch, grants farm and hopefully a few baseball games just to name a few. 

Happy Memorial Day Weekend!

Sorry for the long overdue update but you can imagine how busy our life is now.

Connor continues to stay strong. He try's and stays as happy as he can but he still has many difficult moments of not just pain but the whys. It's hard to get a 6 year old to understand and even harder for him to control his emotions when the pain is just excruciating.

We saw the drs Wednesday and had X-rays done. He's got about 2" of new bone growth! And had another 3/4" taken off his lift. The bonus break is healing but it will need to be fixed after the Fixator is off, there is nothing that can be done now. We should be done turning Wednesday May 28th, we have another dr appointment that day so we will see if turning will be officially over. They have some concern with the lower half of the break closer to the knee in that it is being pulled down and they may have to try and align it better, but that will be addressed next visit. 

Physical Therapy...well it plain sucks. We are going to talk to the dr about having Connor talk to a therapist and maybe discuss if there is something he can take for the anxiety he gets during PT. We are running out of ideas to keep him calm but his PT sessions are screaming to the point where he has been moved to a private PT room during the stretches as to not scare or distract the other patients. He hates it. His behavior during this time is something we have never seen and I can't stand seeing him like that. The good is that once PT is over by the time we are outside he has calmed down but is very tired(I would be too the way he gets all worked up and screams. I'm surprised he hasn't lost his voice.). 

Connor graduates Kindergarten this Tuesday!! Seems like he just started school yesterday. 

As for this weekend. We are going to try and relax and enjoy it. We have been invited places but he haven't committed to anything yet. 

Thank you to all who have served and are currently serving our country and who lost their lives protecting our country! Happy Memorial Day!

Busy Busy Busy

Our updates will be more along the lines of once a week for now. Things are busy around here:)

Connor has had quite the busy week. Since his awesome baseball game last Wednesday, his week wasn't done yet. Connor went back to school for 2 hours a day on Thursday!! He was SO EXCITED!! I drove him Thursday and Friday and then Monday he got to ride the bus to school!! He is thrilled to be back at school with his friends!!

Saturday he got to go to a friends birthday party and he had a great time! Then Sunday we went to the Spirit of St. Louis Air Show and saw all kinds of cool airplanes and helicopters and then watched the air show which featured the AMAZING Blue Angels!! It was spectacular!! He has not stopped talking about how cool the airplanes were but the coolest part for him was that he and Brenden and Dad got to take a ride in a Huey Helicopter!!! The smile on their faces brought tears to my eyes. To see my kids enjoy the ride and experience with their daddy!! That day, to me, was my Mother's Day!! We spent all day there and even though it was very hot during the show and we all got a little crabby it was still a day I know I will never forget! Then yesterday (Tuesday 5-6) I took the kids to go swimming at Aunt Laurie's!! Once again another day that was fun and helped take the stress away and see the kids being kids and the Fixator not being this thing keeping him from doing things he loves. I see us at Aunt Laurie's quite often over the summer, get ready Aunt Laurie the Maine's will invade your pool, but we will always ask and make sure we take great care of everything! Blessed to have such a great support group and family:) 

Onto the lengthening news. We did more X-rays today and spoke with Dr Miller, Dr Gordon's associate, and we were told that the new bone growth looks great. That we only have 21 more days of the distraction phase(turning the struts) and that the "bonus" break is doing what was pretty much expected. We will NOT have to have another pin placed at the moment and our next follow up is in 2 weeks. They are pretty confident that the bonus break is more set now and is just healing. The nerve pain in Connors foot is still present but no where near as bad as it was a few weeks ago, he is still on the Neurontin and it seems to be keeping it well controlled. He still has some pain in his foot but he can tolerate it now. The stretches are the same, very hard very painful and very emotionally draining for both Connor and myself. After stretches and PT there is just no comforting him and his physical therapist, Andy and I have all just agreed that for the 30 mins post PT and stretches to just leave him be, don't talk or try and comfort because he just won't listen get angry and yell. So as bad as it sounds we all ignore each other and after about 30 mins he's out of his mood and back to that sweet little boy we all know! Today at PT Connor took steps without his walker or holding onto anyone!!!! This is something he has been working so hard to accomplish and once again, this very proud momma had tears in her eyes!! I will take video of him taking these steps all by himself!! 

Brenden came down with strep throat again Monday evening:( he also had an amazing time on the helicopter. He is growing up so fast and is doing so well in school! He and Connor really are best friends and I love seeing them play and have fun together.

Macie is still adjusting to everything. Not only is she having to share mommy with Connor more she hit the terrible 2s and hit it hard. When she's with GiGi or Mawmaw she is very good(at least I'm told) but when she's with me she is definetly testing my patience. But she always gives me loves. Quick story, We got home today from PT after picking up Macie and I told Macie "go inside and sit down for lunch" she said "hold on mommy I need to help 'Connie' (how she says Connors name)" and proceded to go to him and try and help him out of the car. She loves her big brothers so much.

Connor really is the bravest boy I know. People asking him if it hurts and he says "no not really, you just have to be strong and brave like me!" I am so proud of him! 

One moment, One step, One day at a time!! 

Overdue Update!

So not too much has happened since the last update. Connor still has the break and we are still lengthening! 

Over the weekend we celebrated Brendens 1st Holy Communion. It was a beautiful day and a beautiful ceremony. 

Sunday we relaxed and did a bunch of nothing! Had PaPa OG and Uncle Patrick over for the famous "Grandma Tacos" GiGi is in California. 

We are still going to Shriners 3 times a week and it gets increasingly more difficult for Connor each time with his stretches. Yesterday (Tuesday) we scored tickets to the Cardinals game for Today (Wednesday)! I am updating from 7 rows back from the field!! 

We tried to get some autographs but we missed the players:( 

More to some serious news. Connors break is getting worse. Because the Fixator is so heavy it's pulling the break up, if it pulls up anymore we will have to have surgery to insert another pin for more support. 

This xray shows his break. Look at the top ring you will see a pin going into the bone and the bone broken right at it. 

We are trying to stay positive! On that we have separated and 1.5" and have beautiful new bone growing!!

So while sitting here updating a foul ball came flying our direction and a gentleman behind us was able to get it and gave it to Connor!! STL Baseball fans truly are the Greatest in baseball!!!

Hurdles and Triumphs!

So, Connors doctor had us do more X-rays and different views and found that Connor actually fractured his femur around one of the pins. As difficult as this is the dr said that we are just going to leave it alone and let it heal on its own. We are moving forward with the legnthening and had ANOTHER .5" taken off his lift!! 

Despite our complications we are staying positive!

Ups and Downs

It's been a very long few days. 

Over the weekend Connor hurt his leg by stepping on his foot too hard leaving Andy and I concerned that he dislocated his knee or broke something. We took him to Children's to do some X-rays but everything came back normal. I took him to Shriners Monday and followed up with Dr Miller(Dr Gordon's associate) and he too said things look good and that this is probably a pin infection. We started a powerful antibiotic Monday and will be on it for 10 days. Since Saturday afternoon when he did this he hasn't been putting weight on it. We went to PT today and worked through it and the physical therapist said that with these infections it is very painful to walk on, so we just have to push through. We also began turning again yesterday. We had held off on turning until Connors foot was more comfortable with the nerve pain, something that we don't think will ever go away but we will be able to manage with medicine. Stretches continue to be extremely hard on him. 

Things are still very day to day around here. I honestly cannot tell you when he will return to school. Things around here are very trying for all of us. This week is one crazy week with PT and Dr appointments and school meetings to PSR and preparing for Brendens 1st Holy Communion on Saturday I do not have enough hours in the day to complete it all. 

Connors mood is all over the place as I expect it to be. Brenden, bless his heart, tries to help so much but in turns makes it worse sometimes. I always tell him thank you for helping and apologize for yelling. And Macie well she is doing the best she can understanding that she no longer gets all of mommys attention. Hopefully after this weekend we can find some time to just relax, I hope and pray. 

Staying Positive

Friday morning was a very special morning for Connor! 

We went to school and Connor got the biggest welcome back from his class and his teacher Ms Hodak!! He was the happiest kid I have ever seen being surrounded by his friends! It lifted his spirits so much I could see the determination in his eyes to get back to his friends! 

After a very long and difficult day (I will save that for the next post keeping this one a happy post!) his friend John and his mom stopped by after school and gave Connor a present and the boys played! He loves seeing and being with his friends! The smile and the happy Connor we all know and love just shines! 

Happy Easter to all

Getting our routine down

Connor is doing great with his physical therapy. He is able to lift his leg by himself and can bend his knee while laying on his tummy. All of his range of motions with ankle hip knee is better than expected. Our one HUGE major hiccup is Connor has nerve pain in the bottom of his foot. His doctor checked it out yesterday and our plan of action now is to hold the pin turning until atleast Friday and to start a medicine called Neurontin. We will reevaluate at PT on Friday with his nurse Jill. As my understanding goes it may take a couple doses if this medicine to work, he was still up a few times last night with the pain. Other than this one issue things continue to go great for him. He rarely complains if his leg hurting just his foot. He is up and walking all over the place but still gets very tired after each stretching or PT session. 

Connor had a friend from school stop by Tuesday after school. Kaleb and his mom brought a care package from his class!! The outpouring love and support and friendship from his class is amazing! Kalebs mom is also the room mom for Connors class and she and the class are planning a party for when he returns!! We are so thankful and blessed to have so many who care and think of Connor. Connor is going to go to school and visit tomorrow before heading off to PT. 

Missing from this picture is a TMNT but he also got games and movies and play dough cookies and even a few gift cards for some McDonalds and Bread Co! Thank you Erica so much for putting this together!

As for the rest of the house Brenden came down with Strep the other day. He's on medicine and just returned to school today. And this morning Macie woke up saying "my mouth hurts my mouth hurts." She was also up all night and was unable to sleep unless I was next to her. It was a very long night.

We are just taking things one day at a time!

Beautiful Weekend

Connor continues to do really well. He is still having bad foot pains but we try and work through them. 

We had a busy day Friday getting to PT which was difficult for him because he was very tired. After we finished there we picked up his med at Mercy hospital. EE (My sister Erin) helped out with Macie taking her to the little park on Shriners campus. It will be really hard taking Macie to PT with us right now because I need to keep Connor as calm as I can while during PT. We got home and he fell asleep for a bit and Brenden came home. Brenden walked in with a poster for Connor that his bus driver Ms Stacy and the entire bus signed along with a card and suckers!! This made Connor so happy! 

As you can see Connor is standing all by himself!! He is getting so strong! He is walking up and down the steps without going up in his bottom! He has been walking a little more everyday.

EE and Uncle Tom and Audrey came over Friday night and Connor and Uncle Tom played DK on the wii and each kiddo got something special from them! Connor loves having visitors and always brightens up when others are around!

Saturday we spend the day outside! We enjoyed a nice BBQ dad made then a nice walk. At the last minute Connor said he wanted to go to his cousins birthday party. We went for just a bit. He had a good time but was tired. 

Sunday we stayed home and just chilled. GreatGrandma and Great Grandpa McGoff came over (my grandparents) and visited and brought enough food to feed an army! Then GG and papa OG came over for pizza and a visit! It was a very nice evening with Connor showing them how strong he is walking around and evening playing some dice standing up! 

We still do our stretches everyday. It is still painful but hopefully it will get a little better as we go along. 

Brenden is doing well. He has helped us out so much, he is becoming such a little man! 

I LOVE Brendens smile here!!

Macie is adjusting well. She is still learning that she does not need all the attention all the time. I try and give her my attention when Connor is feeling good.

Things are moving along and I'm sure there will be so much to talk about later this week! Hope everyone had a great weekend!! I know we did !

Yesterday was our first full day home without having PT or drs appointments. Connor continues to do well but he has developed what we think are really bad Charlie horse pains in the ach of his foot. We are trying to adjust his meds and try to rub out those foot pains so yesterday was a bit trying. We are still trying to find one of his pain meds as it seems to be one that isn't prescribed much outside the hospital setting. 

He gets himself all worked up and then takes forever to calm down. This med should help with his anxiety level. 

Last night we took Brenden to baseball practice and while we waited for dad to get there one of brendens teammates asked Connor what happened. Connor told him and he asked "Does it hurt?" Connor being in pain smiled and said "No it's not too bad!" He's a trooper! 

We did stretches at home yesterday and Macie laided next to Connor to keep him comfortable!

It really was very sweet!

We have family events that we really don't want to miss but we haven't been home as a family and we need family time as just us. Brenden and Macie need our attention and Connor wants to try and play with Brenden. Each day gets a little better and hopefully soon we will be out and about more frequently with less whining. 

That's it for now, have to work on finding Connors medicine. 

One Week Down....

Well, it's been a week since surgery, although it feels like yesterday yet months ago at the same time. Days are long and nights are short.

Connor continues to get strong and feeling better each day. Although PT will continue to be very difficult along with the stretches Connor can finally tell what we are doing! Today the drs told us to shave a whole inch off his lift!! This is HUGE!! His lift was 4.5" when we started and within a week the shoe is only 3.5" he hasn't gained that much length but it's a step in the right direction. Connor and I both shed tears when we got it! He physically can see why we are doing this!! Unfortunately daddy couldn't be there to share that moment with us but we all shared it once we got home!! We finally get a whole day at home tomorrow. 

These post may start becoming a little less frequent as our life has changed to a very busy hectic life now with Connor and Brenden starting baseball and making his 1st Holy Communion. These are very busy very long days now but we will get the new routine in place and hopefully things will get a bit easier.

Playing catch up

Yesterday was a very overwhelming day. 

We were very ready to come home but we had a jammed packed day with 2 PT sessions and a shower plus all the discharge information we needed to discuss. 

Connor started the day in PT and he walked on his leg for the very first time! He was very scared because of the unknown but he did great!! His first steps just as special as his first steps he took when he was a baby, even more so because he did it with a trendous amount of pain. I am not going to sugar coat anything here for a minute...his PT sessions he is in excruciating pain! The fear and pain in his eyes, the begging and pleading and the "I'm sorry! Please stop I'm sorry!" As if he did something wrong. These stretches are CRITICAL in this whole process and I am the one who has to impart this pain onto him. It is a helpless feeling watching your child suffer and ask "Why Me?" "I don't want to do this anymore!" And we have to stay strong and try and get him to focus that this won't last forever and it will get better. 

On the positive side he was home last night with his best friend and the boys were just smiling and giggling like before! It really is the small things that we take for granted. He had a decent night last night only waking up once for pain and once to go potty. He woke up happy this morning and was happy when we arrived at Shriners for his PT. We have 2 PT sessions today and his first one he walked farther than before but was not scared and was talking and said "hey look I'm doing it!" Then he proceeded to balance on both feet for a few seconds without a walker or support! But then the stretches came and it was hell all over again. After the 1st round we went to chick fil a and then headed back. This time he was very tired. BUT we talked and he was able to do most stretches without screaming and then near the end had to remind him not to scream as loud. He did amazing considering the amount of pain he was in, and I think some is him just scared of some of the stretches. 

We made it home before Brenden got home and as soon as he was home they were playing Legos then minecraft!! Daddy bought a chair for the shower and Connor had his first shower at home. He showed off his mad skillz and walked to the stairs then went up and then back down after his shower! He is doing so well. We still have tummy time tonight, which he does not like but hopefully doing it in his bed rather than a PT bed won't be as bad. 

Tomorrow is X-rays PT and dr visit all in the morning. Hopefully things are moving in the right direction!!

He's HOME!!!

Connor is home!!! It has been a very difficult day both physically and emotionally for Connor. And very hard for mommy today! My adrenaline finally succumbed to my fatigue and it was down right exhausting. 

I'm not going to get into the details tonight as I'm too tired and we all need our rest. I will leave the run down of today for the next post.

Please continue to pray for Connor as it is extremly painful and there is absolutly nothing I can do. I can't even say it will get better because honestly from what we've been told it won't, he will just learn to handle it as best a 6 year old can. 

Loving being home with all my sweet, precious babies!

Rock star!!

Today Connor started off with his PT and every time it gets a little easier but it's still really tough. He's walking farther and farther with his walker. He has not put any weight on his leg/foot yet as it's still very swollen and being such a huge discrepancy we have to wait until his foot can get back into his shoe. 

After PT Connor had his first shower where we removed all the dressings from his leg. He was absolutely terrified of taking a shower. He was afraid he was going to see blood. After a good 5+ minutes of screaming in fear he finally looked and saw it wasn't that bad and actually enjoyed the nice warm shower! I learned what needs to be done with his pin sites and got him cleaned and dressed and back to the room for a much needed nap. 

Daddy came up and brought us lunch but Connor was out cold! Such a busy morning he was so tired. It was nice spending some time just Andy and I while Connor slept. We haven't really talked since Wednesday so it was nice sitting and being with each other. Connors Mawmaw and papa came up for a bit and visited and then GG and papa OG Uncle Patrick and Brenden and Macie. I left with my mom to get us dinner and when I got back our friends The Johnson's came up to visit Connor. All the kids got to play together in the huge rec room! They had a blast. 

Connor is back in bed asleep and I'm not far behind him in going to sleep myself. These are very long nights and days but the good news is we are going home tomorrow!! We still have a shower and 2 PT sessions before we can go but we do go home tomorrow. We will get settled and I'm sure Connor would love to have some visitors!!

Way to go Connor we are so proud of you!!

Better Everyday!

Each day Connor is getting stronger and stronger! As if he wasn't the strongest little man I know!! He amazes me everyday! 

I was not with him this morning but daddy was. Dad said he had a bit of a rough night trying to fall asleep and get comfortable. He was finally asleep by 2AM and he slept until 7AM! Once they were up they had some breakfast and then went to PT. His PT is the hardest for him. Right now we are just doing the stretches that we will do at home 2x a day. They are still hard on him. Once they finished up they played in the playroom for a bit then headed back for lunch. He tuckered out quickly and fell asleep before lunch even got there. He slept till about 2:15 when Brenden and I showed up. (Macie misses Connor but she is all over the place and is hard to keep her calm and contained so she stayed with Aunt Mimi for a bit) Connor are a small lunch and then we decided to take advantage of the nice weather and we took a walk around the hospital and sat out in the garden and just soaked up the sun!

Great Grandma and great Grandpa came up to visit him and so did Great Aunt Holly and cousin Kelly. He had a great visit with them and even showed off his mad skills of getting up and walking with his walker to his bed. 

They left and so did Dad and Brenden and we ate dinner and then I did my first session of stretches with him by myself. It is so hard making him stretch and not stopping when he cries out in pain and pleads for me to stop. But we both made it through. I will have to work with his therapist to make sure the stretches are sufficient because I don't honestly know if I did ok. After we did his stretches we went to the playroom. Connor and I played a little bit but then he and his new friend Ashton played for awhile. 

I swear he had a blast even though it doesn't look like it here.

Right now Connor is resting comfortably in bed watching cartoons. Tomorrow looks to be a little more interesting. In the morning he is getting his first shower!! They will remove all the dressings, this can be very intense, not necessarily pain wise but seeing all the pin sites. We already had one situation in which Connor saw a pin site and some blood and he was very scared. So tomorrow will be interesting to see how it goes. We did NOT turn his pins today but we are scheduled to turn tomorrow. We also have one session of PT again and then I will have to do a stretch session myself. Connor may be getting some friends come visit tomorrow which he loves to have visitors! We are also going to try and get outside again tomorrow weather permitting.

We continue to thank everyone for their prayer, support and everything!! We are so blessed to have such an outpouring of love and support! Connor is rockin this Fixator and is the strongest little man I have ever met!! ❤️All My Babies💙

Still doing great!

I am going to keep this kind of simple.

Andy has hospital duty tonight. I need to get some rest and see my other babies too!! 

Connor had a good day today. Woke up happy and feeling good. We got a bath and headed to PT where he saw his friend Myles! It was awesome watching these two boys encourage each other as they both worked really hard to do their PT! He had a few visitors today. Mawmaw Aunt Gina Aunt EE Uncle Patrick and Aunt Mimi. 

Connor did have his pins turned for the first time today. He did really well with it. He did see one of his pin sites and the blood and had a major meltdown but Jill, Dr Gordon's AMAZING nurse helped get that covered and shortly after he began to calm down. 

He is amazing and we couldn't be more proud of him!!!

Long restless night turns into day.

Overall, compared to the other two boys who had this surgery yesterday as well and who are quite a bit older than Connor, he is doing really well.

Last night was long. He was on the PCA pump with morphine and because of this his vitals were checked every 2 hours. Also a side effect of morphine is itchiness and poor Connor has it bad. He seemed to finally be comfortable around 4:15 when 5am arrived Mother Nature decided she wanted to test my limits and throw in tornados. All 11 kids on the floor were moved in their beds into the hall, 11 is a very high number here their norm is 3!!! Anyways, we finally got the all clear to go back around 6. He was running a slight fever during all this as well! Kid just could not catch a break. We stopped his morphine this morning around 8:30 and he has been well controlled ever since. He did have his first huge muscle spasms and oh how I wish these were not part of this. The poor kid freezes in INTENSE pain until it stops. He is so tough, a grown man would not be able to handle this. Connor started PT today and got up to his walker and got into bed a few times. He's using a wheel chair for now but this is not part of the plan. We had visits from Macie, Daddy, GG and Papa OG today. Connor got to play in the rec room a few times and seemed to enjoy it. In all I think today went pretty well.  

Tomorrow we begin the pin turning. We have a schedule we will follow but I don't remember all of it as this momma is running on about 5 hours of sleep over the last 36 hours. When I get the schedule I will post it. He will have 2 PT sessions tomorrow just like today, 1st at 9am with a very special friend from DASA named Myles! These two boys when are together can't stop laughing and talking! A great friendship!! The 2nd will be in the afternoon. I am not sure exactly when we will turn the pins but Connor is very nervous about this. We have more visitors tomorrow that Connor is ready to see including Myles Mawmaw Aunt Gina Aunt EE and Aunt Manda(in order of apperance:)) Seems that Sunday he will get a shower and the dressings will be removed and we will learn the pin care then. 

As I am writing this, once again St Louis weather is making things a bit more challenging. It is 8:30pm and we have have been moved into the hall for tornados twice in the last half hour. And it is of course time for Co. It's meds and fortunately he is resting nicely. Thank you to all for the continued thoughts and prayers! I was very touched by Connors principal who took time this morning to just call and see how he was doing. We really are in the best community and have an amazing support system! Thank you to all our families, friends, DASA, Everyone at Lakeview Elementary, the caring coworkers Andy works with at Peaody and especially the care we are getting here at Shriners! I will update tomorrow night with all the new and exciting things happening with Connor!

PS-I have not seen Brenden since early yesterday but I am so proud of him for helping and being such an awesome big brother and Macie for being our sweet little princess giving Connor a huge kids when she saw him today!

~Good Night~

Surgery Day!

Connor is AMAZING! He is so strong and we are so proud if him.

He started out the day only able to have clear liquids until 10am. He did great, actually never even asked for food. We arrived at Shriners at 10:40 this morning and got checked in. As soon as we got upstairs he was asking for the playroom. After about 45 mins he and daddy went and played while I talked with the nurse. At 12:30 they called us down to the OR. Connor did get very emotional this time and cried a bit. I think his nerves caught up with him. We calmed him down he got his "happy juice" and he began and relax. The drs came to give us a quick run down of the surgery, anasthesia, and history. We gave him tons of hugs and kisses and they wheeled him out at 1. We stayed strong for Connor and managed to not cry too much after he left. We got an update at 3pm that they were still working on him and trying to get the Fixator right around his knee. Andy and I went to get some fresh air thinking we would have about an hour before they call and tell us he's done. On our way back to the waiting room at 3:30 we saw Dr and he said he did great that believe it or not this was the easy part the hard work is only just beginning. We were able to go back and see him at about 4:30. He was somewhat awake but we got him comfortable and the nurse hooked up his PCA pump, which is a machine that gives him his pain medicine and if he's really feeling pain he can press a button that will give him an extra dose. He won't overdose on this, he can press it as much as he wants but it will only allow the medicine to be released every 10 mins. He has been in pain and pretty intense at times but he presses his button and he quickly starts to feel better.   

Tomorrow sometime in the afternoon we will get him up to at least a chair but if he's up for it we will do more. He will be here at Shriners until at least Monday. 

He is a very strong little man and we are so proud of him. He has flashed that one of a kind smile he has at us and it melts out hearts! The road has just begun and he will be an inspiration to us everyday!! I will try and update more tomorrow!

Almost Time

Surgery day is just about here! To say we are nervous/anxious is an understatement. We knew this would be happening one day but it seems like just yesterday he was born!!! Time has flown. We only hope and pray that everything goes smoothly and we all adjust to this easily. Praying Connor is calm and comfortable and learns and understands that this is all for him, to get his little leg big like he wants. I know he will be in great skilled hands, just praying God guides them and keeps Connor safe and comfortable. We just ask for prayers and support for all of us as it will be hard for everyone for a bit. I will try and update at the end of each day on here with how Connor is doing. 

"IronConnor"

It has been a while since I have last updated! A lot has been going on since then.
Connor helped pick out the design of his website!! Pretty cool huh?! He is our little superhero, our "IronConnor"

Connor did wonderfully with the Hip Osteotomy last year! After coming out of the Spica cast he was using the walker and before we knew it he was back to his old self climbing and rough housing just like nothing ever happened. We returned to Shriners around April last year to get the pin removed and once again Connor was just as strong and brave as ever!! After the removal he was restricted to baths and swimming which it wasn't summer yet so swimming wasn't an issue and he just took showers instead of baths, easy right! He decided to throw in a broken elbow over the summer, a week after pools opened and was out of the swimming scene till mid July. He required surgery with his elbow and had 2 pins placed. Once the pins came out he was told by the doctor the only physical therapy he needed was SWIMMING!!! He definitely keeps us busy.

So now comes the "Getting Ready for Lengthening" part.

We had a visit with Dr. Eric Gordon at Shriner's back in November 2013. Here is where we discussed the plan for Connor's lengthening.

Connor is scheduled for Surgery April 2, 2014. We are beginning with a Femur Lengthening with a Taylor Frame fixator. This device is a beast of a device in simple terms. It is going to start at the top of his thigh and go to the middle of his Tibia/Fibula. This device will not only lengthen the bone but also help to straighten the bone as it grows and will help stabilize his knee and rotate his knee so his knee is more in front of him as opposed to the side which is how it looks now. He will have this device on anywhere from 6-12 months. The more activity he does will promote a "quicker" bone healing. It will be no less than 6 months are we are thinking more like 8 months just so we don't get our hopes up that we will be done at the 6 month marker.
 
These are two pictures of what the device will look like. The picture to the left is of a boy a few years older than Connor but it gives you an idea of what this looks like. Unlike this boy, Connor's fixator will be a little longer.

For this surgery Connor will be in the hospital from at least 5 days up to about 10 depending on how quickly he recovers and we learn the proper care Connor and the device need. We are looking at Physical Therapy 3 days a week for the entire duration the fixator is on. In addition we will also see Dr Gordon every Wednesday for x-rays to check bone growth and pin sites. As with any open wounds the risk of infection is extremely high and we are well aware we may have additional surgeries for thorough cleaning of pin site and or tendon release if the tendons become to stiff. We had the decision to try and do 2 of the 3 days of physical therapy closer to home at an outpatient facility but decided that with the level of expertise the Shriner's team has we feel its best to drive the extra miles to get Connor the best outcome with therapy.

Connor will be out of school for about 2 weeks. Once we get his care plan down of what days we will be going to Shriner's we will send him back to school. We are already in the process with Lakeview Elementary of getting him approved for the 504 plan which is basically stating the school cannot discriminate against him because of his disability and that he will be medically cleared from the days he will miss and not be penalized with truancy. His school team is made up of some wonderful people who will help make the school environment safe and still fun for him. We are hoping to schedule physical therapy after lunch at Shriner's so that Connor gets the academic courses like reading and writing and math as opposed to PE and Art and Music. While I fully believe that those classes are very much needed he needs to have strong reading writing and math more than the others. We will have to have numerous meetings during the summer with school because he will still be in the middle of this at the start of his 1st Grade year.

As for his activity once the fixator is in place he is pretty much a go for most things boys like to do. He can still play on a playground and most importantly he will get to go swimming! It is almost most encouraged for him to swim as this will be great therapy and he won't even know that it is!

Connor knows that we are starting this process in April. He is a little nervous but has always still stated that he just wants his little leg big. He knows all the options and he knows this is going to hurt but he wants to have BOTH legs the same. We are going to get both feet of the ground and it all starts with the first step. This is not the first surgery and this will defiantly not be the last. He are looking at 2 more additional lengthening's after this one and hope to have him completely lengthened by the age of 16.

Please keep Connor and all of us Maine's in your thoughts and prayers. I will try my best to keep everyone updated of Connor's journey.