Why cant there just be answers with a sure ending?!?

its been awhile and alot has happened in the past month since Carsuns cast where removed.Sadly more bad then good...

Carsuns legs started re-crossing. We kicked it into high gear and got him therapy within a wk of noticing it happen everytime he tried to walk. That in it self was not easy. our insurance keeps dening the pediatric physical therapy at the local hospital. We arent really sure why but didnt have alot of time to fight them like usual, so we found a place to go to while we tried to figure it out. Volk Physical Therapy has been amazing at stretching carsun and getting him "loose"...but Dr. Dean has done all he can do. We are praying this final push from his Nuero will get the therapy approved at the pediatric center. If so he will start on Friday.

Today Carsun went to the urologist for the first time. We have done many time trials on Carsun trying to see when he potties the most...well they dont work if he  potties alil bit every hr of the day! So anyways we went there today, answers...NONE. On the good side his kidneys and bladder both look fine. As for potty training their response was..."kids with CP we have no way of knowing just how damaged the area of the brain was affected, so we cant say he will or he wont but never give up trying. It could be 6mths or it could be 3 yrs, maybe never....just keep your head up and keep trying". I wanted to scream really..like dont u think we dont not give up on enough everyday....but i knew it wasnt his fault nor the nurses. They where just being honest.

I just am so tired of not knowing the future. ITs getting to be a big heart wrenching thing to handle! The headaches keep growing, the stress keeps monding, the tears keep puddling.

WHEN WILL IT EVER END???

I already know the answer...do I like it..NO...do I have to face it with a smile...YES.

Im scared I cant hold the strength he needs from me. Its more then seeing him move easily, talk normally, its about needing strength from the strongest around u to get through it....and im just not sure Ill be able to always be tht person. I hate for him all the IDK's, and limited answers.I just want PEACE...peace for us both...for our family. Will it ever come?? Im pretty sure I know tht answer too.

The day that felt like a life time to get to has come!

Right after cast came off!

Carsun went to see Doctor Casey to have his cast removed yest! He was so excited! First thing they did was cut it off, and she made sure when she put it on it wasn't coming off easy either! 3 pieces later it was off and we taped it back together to bring home! I was a bit surprised that Doc Casey wanted him to stand right away but all in all at this point I trust her, and this surgery has been completely better then the last. We had already noticed with him sitting on the table that his feet weren't turning into each other so we knew that there had been some change for the better already. When she asked him to stand he didn't want to at first but we had promised him a trip to the pet store if he did really good, so we told him this was it the last thing he had to do to go to the pet store...with that he said OK and Dad stood him up and WOW!!!! Is all I could see, think, picture..ahh everything was just WOW! My son now almost 5yrs old stood for the first time EVER without anything on his feet to help him...he stood and his legs didn't cross! Dad told Carsun lets walk to Doc. Casey, lets show her you can do it...and he walked w daddy..WALKED without them ever touching or even crossing each other! AHHH I'm crying now lol...but really the joy in our hearts is just exploding! Now Carsun is OK with not walking, he loves his walker and his wheelchair and all the equipment he uses daily and we are happy that he is happy...but this ahh this will make moving in his walker 1000 times easier! This will make him being able to cruise easier...everything pretty much that has been one of his goals in school will be made easier just with the shear fact that his feet don't touch! Now we are NOT giving up on walking independently...we will never give up on that but we are, humm whats the right word, realistic that's it, realistic with what he is capable of right now. This is a HUGE GINORMOUS step forward for him that we do pray brings us to that ultimate goal of in dependency! We are just realistic for Carsun and we will continue to push him but not over push and expect more of him then he is capable of because ultimately he is a blessing weather his feet are always on the ground or if hes doing turns on wheels! It wont change how much of a blessing he is to us and everyone around him weather he continues this or not but most importantly we wont stop trying!

Many of you that have known Carsun since he was little and was diagnosed have watched him grow and know just how much of a turn around this is and understand our expectations for him. Some may not understand why we say we are fine with him using a walker or having a wheelchair...and its not that we so much want that for him, its that we have grown n understand the hard journey this is for him and don't think we wont make him try, because if anyone knows our family we try and try again,but if its not what he was put on this earth to do we aren't gonna make him...we would hurt him more then help him. So we stick with one day at a time, we do what they do at school and bring it home and try some more...we work hand n hand with therapy and that's the only way to success. One of the most important things Ive learned is success can not be pre-determined with kids like him, and can not be "textbook"...they make their own story, their own textbook to follow...and you take each goal as a moving forward and when its not completed in that year then we change it alil to best fit him. So please don't think we don't want him to walk because we do...we are just happy hes here, and that hes such a blessing to us, and when he walks with a walker its just as special as walking alone because some kids just need alil bling to help them get along, and to remind you and me that we are blessed in every way!

So for today, this week, and into next month as we celebrate him turning 5 yrs old...we will be filled with joy, his teachers will be filled with joy as they see him next wk a completely different child then they ever met, and our close family and friends as we celebrate his birthday with them...we will all be reminded of yesterday and the joy we all felt when we watched that video and we seen that smile on his face! We all want to just say thank you! Thank you for never giving up prayers, never walking away, and always being behind us in every way! We love you all...in everyones life there is a blessing...Carsun just happens to be a special one!

Post Op appt

Well surprisingly enough Carsun has done so well with this surgery! He has only taken his Lori tab 4 times, and muscle relaxer about 10 times(he seems to have them a lot at nite or naps)! He just amazes both of us! He's trying to roll over and get off the couch saying he wants to play in the floor..uses his bar as a race track and is just loving eating on the couch!
Carsun had his post op yest with Dr Casey. She was so surprised and overcome with how well he was doing. He's been pulling up and sitting by himself. Dr Casey said he can have cast off in 2.5 wks and the large bandages off then as well. Inside incisions have healed great and she removed tape strips. So Aug 17th is the day to start over and overcome! We know Carsun can do this with lots of love and support.

Surgery #2

I have to say I'm relieved that is behind us and healing can begin! Carsun had to be at the hospital at 6am (ahhhh way early with an hr drive there). He was so relaxed this time which was great. They gave him silly meds, doc Casey came in and brought up thought of using a spika cast for 4 wks along with removing plates and injecting botox into abductors. She felt with doing that we would be hitting all the options available without over stepping and doing anything we might have not needed too. After we asked many questions and the doctors personal option we all agreed on cast. Dr Casey said there was no text book to say this should work but carsuns case wasn't in the text books, it was very rare and she had no guidelines to follow but trail n era. We already felt more needed to be done then just removing plates and botox, he's had botox injections since he was 1.5 yrs old and it hasn't helped that much, so we where game w trying whatever else she would do! Lil did we know god had a better plan! About 30 mins later Carsun was wheeled in the OR. We received at call from OR about 30 mins later saying they where not doing botox and Dr Casey would explain later...we where kinda bummed, I mean it doesn't help him much but even alil is worth it! So we waited n waited...about 45 mins later got another call..this time Dr Casey..she said she was going to save his botox for later, that when she reexamined him under anesthesia he was tighter then she originally felt closer to to knee. She felt best option would be to cut abductors while under already and wear spika cast for 4 wks. PRAISE  GOD! We knew this would b painful for Carsun but it was what he needed to gain his mobility back! I was personally so happy I bout started crying on phone! About an hr later she came out and said he did wonderful and was about to go to picu to wake up and receive his pain meds. She gave us his old hardware that she removed and said here's a parting gift to a new recovery! ...now to the most scary part (I no alil ironic we r more scared of the pain control then actual surgery)..PICU called n asked for me to go back BC they couldn't get him quite or calm (my emotions where everywhere) get back there and he says "where's my daddy" of course lol...so thy let cj come back and he got calm within an hr on minimal pain meds....was moved to recovery and within 3 hr's of leaving the OR he was going home! OMG!! We where so relieved he did so well and amazed at the staff and doc Casey for really taking the time to look at issues he faced last surgery and made this one look like a piece of cake! Carsun has been home 2 days now...having some muscle spasms but overall feeling really good. He's been up playing Xbox NASCAR, racing his Dale Jr cars on his leg bar, and enjoying getting to eat on couch lol. He's ready to have cast off, he doesn't understand why its there and why it can't be taken off. Overall he's doing amazing considering he has 4 insisions in groin and hip area! He is such a trooper, lord idk how he fights but he does! I'm just proud to b his momma that's one thing I do know!

When will he every go through enough??

Yest was Carsuns last post op appt for his upcoming surgery next week. AHHHHHHHHHHHH.....at the top of my lungs is an understatement! I honestly dont know how I kept it together during that appt! Carsuns hardware (plates and screws) need to come out because he has out grown then and they are shifting down. This we knew..understand to the "T"! What we have been faced with is the HUGE back fall the last surgery gave him. His legs where crossing before the last surgery but not horrible, he could step, would clip his toes but could restep his foot to get it in the right spot and could walk in his walker slowly without to much support across a room! WONDERFUL work for him and he was soo proud..the joy on his face just makes him smile so much! Then we did the surgery and bam! Like a gun went off and everything he had joy for was taken from him..we where so stuck back and forth to doctors and getting told add this and do that and nothing NOTHING working! Now here we are at surgery time...PERFECT time to make a difference and BAM again! There goes everything we hoped for for Carsun this year! The surgeron only wants to remove the hardware...my reaction in my mind was literally blank...wht do u mean ONLY HARDWARE! Hardware didnt take his freedom away, it didnt take those tiny steps that he worked so hard to take away, CUTTING THE BONE AND SHORTING IT DID! Im not a doctor and I know that!! Now we are being told to take the hardware out...WAIT..and WAIT..and WAIT a whole 9 MONTHS to relook at where he is and go from there...SERIOUSLY!!! Hes 4 and is about to under go another painful surgery and you're telling me to wait another yr almost to just have to redo it another yr, another summer, another school year?? I just dont understand..im his mother, i see him EVERYDAY..u doctor has seen him a handful of times and take steps for literally 2 mins! Even his therapist said something needed to be done for him to succeed! Ugh I said my peace but I cant make a doctor do something, and I cant wait for another doctor at this point...my only option is to remove the plates, put him in pain, and turn around just when he begins to gain again and pull it all back! My head has been in this surgery for over a month now...i go week by week saying 3 wks 2 wks and now i just want to go back and say i have know idea whats next! I know wht i want for my son..im very realistic, i know he cant walk the moon much less the mall but i want him to at least have the option to try! I mean tht joy he had taking those tiny steps i used to feel where barely anything now seemes like a 1000 yards out of reach! Why ?? Why cant he just have one thing easy?? The one thing he found so much joy in being able to do; and not even the "normal" way, he cant even have back because we are "taking one step at a time"! Id just a yard of steps at once if thy knew it would help! We just want to see that joy again in his smile when he takes tiny steps instead of frustration and tears because he cant make 1 step without help fixing his feet!

Carsuns 1st surgery

Well who knew moving could change so much?!? Well we got PCS'd to Virginia Beach...transfered schools..transfered doctors... and WAM!!! Something may be wrong with your childs hips! Are you kidding?? He had been "frog" sitting for over a yr but know one ever said there may be issues. Carsuns femur didnt curve into the pelvis ...xrays showed the range of motion had "felt" normal because the pelvis had actually started forming around the straight femur. Lucky it was caught in time, Carsun is still young enough that the pelvic bones should be able to reform around the newly positioned femur.
The surgery was well far from normal! He was only supposed to be admitted for 4-5 days...8 days later we where finally released. Carsun had an epideral to control pain and it didnt work. After trying to control his pain for almost 48 hrs all 7..yes 7 powerful pain meds hit Carsun all at once. He was put on oxygen for 24 hrs and all pain meds stopped and switched. It was so scarey...he was barely there, couldnt wake up eat drink talk nothing! We where so worried didnt have a clue what could happen next. We went in with so much trust and felt so highly of the team Carsuns care was placed under and then this..We where not expecting anything so intense. Our hearts where breaking...Carsun was barely hanging on and we had a newborn, 1 yr old, and 6 yr old at home! Thankfully Carsun turned a quick corner when we requested pain meds to be stopped. within 24 hrs he was awake more and eatting. 12 hrs after that was transfered from the PICU and to the reg pedicatric ward, and not long after that he was released to go home. Recovery was hard...carsun had to heal and then learn to rehold weight on his legs. He still has a long road to go but hes a fighter!
Carsun has developed a new problem now that he can weight bare..his legs are crossing worse then before. He cant pull them apart from each other when he does step to be able to gain good strength. Xrays look fine so trying new equipment to try and see if positioning is the issue.
After 2 braces there has been no difference in Carsuns leg crossing. His plates from femur surgery need to be removed. After our move we are seeing a new doctor..something just isnt right with his legs and we just arent sure what else to do. :(

Finding out his Diagnosis

Carsun was such a cute lil baby...fussy...but super cute! At 4 mths old Carsun had a febrial seizure. After this seizure Carsun began having what is known as trimmers, its a shaking of the muscles as they relax. Unsure at the time what was going on and adding in his developemental delay, the doctors decided to do an EEG and MRI. The EEG came back normal. The MRI showed brain trauma on equal sides of the brain. A later trip to Developmental Pedicatrics lead to the diagnosis of Cerebral Palsy at the small age of 7 mths. At the time it was hard to cope with but as he grew so did we! Carsun began therapy in OT, PT, and speech right away at 3 times a week.Carsun grew and grew slowly developing, combat crawling at 20 mths, pulling up to stand at 38 mths, many struggles along the way. Hand splints added, AFO foot braces added, equipment added...many changes in life for him! He took everything like a champ! He would laugh and play in anything you put him in! Hes always been such a happy boys! So much joy and love to share!