Orthopedic Surgery- Again

After our initial visit with Dr. Emily, I became the best researcher in the entire world. I can almost guarantee you that any mother with a child that just got a surgery name, a lab test, a diagnosis etc, does better research than the FBI! You can't underestimate what things we WILL find. And sometimes it takes us to another planet to do it, but we want all the information we can.

So I started with Tendon and Cord Releases. Tyler is MUCH older than 2. But he also is a lot more mobile than most kids with CP. Next, I went to therapists that we had. Tyler's PT, Sam, also had a patient that was looking at needing some orthopedics surgeries done as well.  So we exchanged information.

A surgery that is not new but is new in the CP circle is a surgery know as SPML or Selective Percutaneous Myofascial Lengthening. The surgery seemed like it could just be an answer to a prayer.  However, only 2 doctors in the entire United States do it. One doctor founded the surgery, the other was trained by the founder. I read all I could. And made a list of questions to ask Dr. Emily when we went back to see her when she got our Gait lab studies back.  I joined a group of people who had the surgery done and needed to see what the responses were.

I researched PERCS or tendon lengthening procedures and SDR , or Selective Dorsal Rhizotomy. Both of these are still surgeries in which he may have to have in the future but it will all depend on how well he does and how well his body responds.

The final option that I researched was called a Single Event Multi-level Surgery- or SEMLS. This one is a little more invasive and I really liked what the SPML offered by way of cuts and quickness in getting the kids back on their feet. I also talked to another mother about the surgery who had done it on their daughter. It was only one leg and she gave me so many things to be hopeful about. My issue of the full care and no mobility was really bothering me. She helped eased my concerns until we found out he would NOT be able to move like she had. IT was VERY hard, but she was so kind in answering so many questions. But, we couldn't know anything about our options until our update and report for the gait lab.

The report came in and our appointment was made. Tyler was quickly going down hill as far as his foot was concerned. He had to have his muscle relaxers upped and he was falling asleep in school for several hours. He was crabby at home. It was just bad. And to top it off, we were still without even a temporary brace.  And we were without a plan!

Dallas took the time off work to go to the appointment because he had a lot of questions as well. This surgery is literally HUGE! No matter what, we have to do something, but it isn't going to be the easiest thing. It also takes away so much for Tyler and adds on an extra load for me as the mom and as a family as well. Every single person in the family will be impacted by doing a surgery on Tyler.

At the Hospital we were checked in, weighed and I was nervous. So nervous that I was so glad Dallas was there because I was not able to be where I needed to be. This is also where we learned that Tyler has FINALLY gained 1.5 pounds. That is the first legit weight GAIN in 3 years. We were loaded into our room and then we were taken for X-rays. Grayson and I sat in thew waiting room looking at X-rays on google images ( we were selective but dang.... those are funny!) Tyler had a TON of X-rays and Big Bird did and Tyler got Grayson a sticker or 2.

The appointment went well. I ended up in tears multiple times. His study was done and his lab was looked at. His hips are fine ( THANK GOODNESS), he doesn't have Scoliosis ( thank goodness), and he is still small and has not hit puberty yet (Hooray!). The bad news: when combined with his gait results and his X-rays the option for surgery was pretty much taken off the table. Before it felt as though there was an option of yes or no. Now there was a much heavier air of " We need surgery and NOW. Now to figure out the best one.

I asked about the SPML and we weren't even able to qualify for it, and I kind of felt laughed at for asking.  The best bet for Tyler would be the SEPML or the Multi level surgery. With the gait lab and X-rays and how his legs work and how things look when that body fires, it fires in all the wrong place  and at the wrong time and it just makes for a terrible looking walk in all the wrong places. It also makes it look really VERY painful.

At the time of the appointment Tyler and his feet were so bad that he was literally walking on the top part of his foot. it was REALLY bad. He also NEVER complains of pain, and he complained everyday. I thought for sure that we would still be sent for braces but we weren't.

We got all the questions answered we could think of. The ins and outs of the surgery are this: Tyler will have whatever tendons and cords released that they think he needs when they get into his legs. His femur will be rotated on his right leg. They will put a plate in it. His feet with have some reconstruction done on it, but to what extent we just don't know until they get in there.

Recovery time: 6-8 weeks non weight bearing. Casts. Wheelchair. He cannot, CANNOT put any weight on his legs. So we will be adding a few new workers to our house. ( If you live in Arizona and need a job!!!! Holler) Tyler will be in the hospital for 3-5 days. After the 6-8 weeks, he will have therapy 3 times a week for the next several months after that.

Summer time this year is only 6 weeks. Tyler's surgery is going to be on his last day of 3rd grade. Hoping to get this all done for the summer makes it so that we will have a loner surgery time. Total Surgery time will be 6-9 hours. It will be over a holiday weekend.

That was a lot of information!!! And dang... Surgery stinks!!!

Fall Break- College edition

Mom is on college fall break for one more day. Kids finally go back. We are home and enjoying our weather. We are finally on the cool down. Lots of things have happened and I have tons to blog about. Looks like MOST of October need to be chronologically taken care of.

Fall Break

Tyler is on Fall Break and so is Grayson. Because we have such a long Fall Break we decided we would attempt something we have NEVER done and drove to Utah. We will be here until we decide to go home!! Hit me up if you want to hang out.... But better hurry, our Salt Lake Schedule is filling up. We can't wait to spend it with Oli, Amy and Stephanie and the few others on our list........


P.S. The weather is DIVINE you Arizona boiling people

Hematology/ Oncology ( que dramatic music please)

I am just finishing up my degree at ASU and have the GPA ( I have NO idea how) to be able to at least apply to a few( like 2) local Physician Assistant programs in the Great State of Arizona. If I can't get into either, I will have to keep applying or not go because I can't leave the great state of Arizona either. (Secure borders and all :) Just kidding! Long term care) Anyway, having a child with with extra needs means we meet a lot of people who's children are sick. Some terminal, some with genetic craziness and some with just really bizarre happenings.

As I become friends with these kids moms, I get curious and we talk about our kids conditions, and we compare notes of what doctor is awesome, what doctor could brush up on his people skills and what doctor could just brush his teeth. ( Yes doctors, there is an unground group of SN moms who will either make or break you. It is not limited to specialists and it is a NATIONWIDE thing, so be afraid!)

With these conditions also comes Dr. Google. Yes, you know him,  the ones that say that cough is really the start of Ebola. That is how it works.  Everyone does it.

By no fault of the "real" doctors we see, sometimes googling just helps a soul! But the other day, not even google could help.

Grayson, bless his little heart and GI system, eats rocks. Not just" oh look, your kiddo has a rock and some sand in his mouth" eat rocks. We are talking chewing off bits of the rock, chewing it into powder and swallowing the rock particles. This includes things like hiding in the back of the house to chew on the ledge of the window where stucco can come off, licking the rocks on the pillars at our house and then of course the whole, just sneak the big old fat boulder into the house because we won't notice you in the corner EATING IT, rock problem.

We took him in a while ago and was referred to a PICA clinic.What a bust! Ignored the problem, like awesome parents and dealt with smaller things like seizures and botox and such. ( Sarcasm inserted) But having no neurotypical ( this is what us "special" parents call kids with no magical neurological "gift") sibling or anything to go off what is right or wrong, when we found Grayson screaming and screaming and screaming all the time we thought that there might be something wrong.

Turns out, he screams cause he is three. Hmm. Turns out however, they were less than ok about the continued rock eating and the extreme pale skin my son is sporting. So decided to draw blood. Just a poke. And it evoked no tears from either of us. Came back that he was a " little" on the anemic side.

Fast forward to going in again because he is still screaming and screaming and screaming ( Turns out they do that more when they are tired. And they also sit on their brother's head while he is under water because they can and are three) But it is still OK that he is screaming. They notice no follow up on the anemia was done ( read: I didn't realize they want me to come back and 2) we have been moving and having botox and having LOTS of seizures so I figured a little dirt and rocks... whatever)

Again a finger poke..... Anemic.

Go get more blood work.

3 days after finger poke we go get the blood work done. His hematocrit is LOW. Like really low. We also asked for a CBC and along with that comes the WBC  or white blood count which helps determine if the body is fighting something off.

I get a call and a voicemail saying to call the office. The Nurse practitioner is gone for the day but the MA ( medical assistant) was given the information to share that I needed.  The conversation went like this:

"NP said that Grayson's hematocrit has dropped even further and he needs to get in for testing as fast as possible. We have sent over a referral form to the PCH hematology and oncology. He needs to get in as soon as possible and they are looking over his records right now. What family history do you have with things like, childhood cancers or renal failure?"

Um.....

I don't even need google to figure out what the heck is going on. I ask her nicely for the CBC and white blood cell count. See, if I know that, then I won't be blind sided by anything that is life threatening before walking into oncology.  She insists that she can't give it to me, that I just need to call the PCH number she gave me and get on the schedule.

I hang up. Cry. Sob. Scramble to call anyone I know that has a MD, DO, PA or NP at the end of their name. I just need to know what the other levels are at!! I make a few sobbing phone calls. No answers. I am throwing up at this point ( see I have a anxiety problem... more about that later)  more sobbing and another call back to leave a message for the PA to call.

While doing that I was on with hematology and they were working to get him into the right place and would " let me know" where to go and when.

PA from our peds office called. He was trying to get to the phone to call when he saw the information that the girl DID give me and said she is going to be in panic mode. And he was right. Cause he is cool like that.

I was horrified that Grayson might really be sick and that this whole time we let him eat rocks and not poop for weeks and yell at him for screaming ALLLLL the time and now he had CANCER!! What!! What kind of a person was I!! ( those were the thoughts I had.)

Rest assured, the long story you just read was all just drama. Grayson is FINE. He has a LARGE hematocrit problem and he either doesn't absorb iron, has GI issues contributing to his lack of absorbing nutrients, is Mal nourished ( you know.. no big deal) or has a Mal absorption problem. He needs to see hematology and oncology and will. But he is not "STAT" like the nurse indicated. It is more like let the real kiddo's get in.  He probably could use a transfusion. It is pretty low, but first find the root of the problem and move up from there.

A huge thanks to the people who saw the ugly face cry when my worse fears were cancer. Another huge thanks to TJ Barnett who got 2 voice mails while ugly face cry was happening, Aunt Nicky who was trying to figure out why ugly face crier was still crying and call to help more and mostly a thanks to the PA who thinks I am smart and knew that oncology+low hematocrit+ I won't give you any more info + STAT= this mom is crying and freaking out and called to figure out what in the world was REALLY going on with me.

awwww.... Stupid Iron

Story Time

Obviously, I am still trying to play catch up, but wanted to keep track of all the doings of our cute little perfect kids. So you will have to bear ( or Bare.. I am not a grammar genius) with me. We are STILL in April/May!

Grayson has always been a bit "hard" so I had to figure out what in the world to do with this child so that he would be worn out in time for a nap and for Tyler to come home to not being eaten alive by his cannibalistic brother. After google searching and pintresting I had made a few notes and we started with the obvious. STORY TIME!!

I use to take Tyler all the time. But since having another awesome dude, moving and going through some major health issues with D and myself since Christmas, a shower is about all I am able to do these days ( then and now!)

But getting out and moving was our best choice. So we got up, took Tyler to school and we went to the Library. We hit the youngest one because I wasn't sure how Grayson and his ADD/Two year oldness would be at the library.

We  got there early for a "limited seat." We had "baby" with us and we walked around the library. The kids library is the COOLEST!! There is a season themes all down the wall and it was GREAT. We played at the beach part the longest. But it was a lot of fun .

We sang songs, did a craft and then Grayson wanted to go in and out of the tunnel from the igloo. He spent as much time around the water station as he could. I was pretty impressed.

Sadly, I started to be a cool mom just in time for the story time to end, but next year, we are starting a whole new adventure. Preschool........ daycare.........use my degree for something. (WHO KNEW!!)

Senior Year

That is right..... I finished the first of 3 senior years at ASU! As a transferred Sundevil, I must finish 60 hours of ASU credit so I get to go and redo classes, takes some I don't want to do and then finally Graduate!!

But I am officially done with my second full time semester walking away with a 3.6 for the semesters. It was much easier to finish upper division now that I am in my set major. Hopefully the trend continues.

So watch out.... You are in Devils country now....


 Go Sun Devils!!!!!