Surgery update

Today the boys had both PT again and I was able to talk to Ashley who is the scheduler for the Surgeons at the Office.
It looks like the main Surgeon, Dr. Mindy Siegel, is not sure yet when she will return to the Clinic, and in order for the boys surgery to not be pushed back to much we are now going to switch Surgeons.
Dr. Shaw will take a look at Connor and Alexander next week on March 4, and depending how his surgery schedule is like there is a possibility then that the surgery could be as soon as March 26. If for any reason Dr. Siegel returns prior to the surgery she will then take back over.

Alexander was already in his PT season when I talked to the scheduler but Connor was right next to me. So he told them that he wants it done as soon as possible. He wants to be able to figure out how to walk with crutches before his Birthday comes around - Now if it had been Alexander by my side he would have tried to talk everyone out of scheduling the surgery period.
My precious youngest might have had his health battles in his life BUT they were mostly happening before the age of 3, which means a lot of his memories are purely put together from us telling him. He is very scared about all this and of course does not have his brothers acceptance of things. So in a twisted way it will be good for them to go through this together, since one thing Alexander has and that is a competitive streak that might help him recuperate after surgery if he sees his brother is pushing forward.

Hugs,

R A C A

How are you?

Laughing that I am coming back to a post I did a long time ago. I used to be fascinated about the phrase here in the USA where you automatically ask someone how they are when you meet them.

I find it was a strange custom as of course we expect to hear 'Thank you I am fine and how are you?'

We are not prepared to hear any real feelings or heaven forget to be told life is miserable!

Here is my laugh for today. This am I went to the store to buy some dog food and while I was finishing up at the checkout, the girl working asked the gentleman behind me how he was. He said 'Well I think I have a Cold.'. Now that statement almost had me jump three feet away from him, by pure reflex - lol, and I was wondering while I rushed out and away from his possible germs that poor girl at the checkout must be really glad she asked him that question ;)

Truly, here was a guy who answered truthfully but neither I nor the girl really wanted to know. Is it sad he has a cold, yes, but trust me unless you are family it is better to keep that to yourself as we are a society that does not like a proximity to known germs. Unknown and all is well - lol.

So, How are You today?

I am fine, and loved my giggle of the day.

Hugs,

RACA

Make that times 2: Right side tipial derotational osteotomy medial calcaneal slide Evans lengthening.

Since our life is not interesting enough, the medical world thought they make it even more interesting for us.
Today I had a long talk with the boys Physical Therapist  Miss Allison, who when I informed her that Connor was receiving the above mentioned surgery in April, right away asked me about Alexander's surgery date.
Well, I told her that the Doctor said we should give Therapy a try for another three months. She said she would talk to the Doctor but her assessment after 3 months of therapy is that the issues will not be able to be corrected by therapy alone.
As if our youngest had an idea about those kind of news he actually got sick on the drive to PT this am. He had to throw up and Connor being the supportive brother he is said for him to lay back and relax as we were on our way to the Hospital anyway ;)
By the time we got home there was a voice mail from the Hospital and it said that the Doctor looked over the x-rays again and compared Connor's and Alexander's and he agrees that Alexander needs the surgery as well. So they will try to schedule them for the same day if possible. Twins since Birth, twins with the Tethered Spinal Cord Syndrome and now twins in Casts in a bit under 2 months.

They both have been through a lot but this will be the first time they will be having surgeries at the same time and I was grateful to hear that my Mom will be flying in for the boys Birthday in April and hence will be here for the surgeries as well!

The boys are fighters and will get through this Spring and Summer with feet's in casts, I am not worried about them getting through this at all, I am just a Mom who hates them going through pain. So my wish will be that this will be as painless a journey as possible and that by fall and winter they be back to running and skiing or snowboarding.

Until April we will try to be on the go and as active as possible as I am guessing we will be laying low come April……

Hugs,

R A C A

Right side tipial derotational osteotomy medial calcaneal slide Evans lengthening.

Now the headline is lots of names that made no sense to me at first other then the words from Dr. Matt Bershinsky, that Connors feet are very messed up. He said there are so many things wrong that there is no brace or therapy that can correct it. 

Now here is the part that I once again fall back into the 'it is my fault' line of thinking…

When Connor got sick his legs were the first thing to go. His muscles were badly inflamed and were getting tighter and tighter. As a kid he always preferred walking on tip toes but once JDM hit he could pretty much only walk on tip toes.

So after he got out of the Hospital in late March 2010 (after the 8 weeks in the Hospital), he started PT, OT and Speech Therapy. For his legs and feet he had regular PT, he had Hippo Therapy and Water Therapy. In 2012 both his feet were put into casts to stretch his Foot muscles and straighten his ankles. He spend 6 weeks in them and while there was some improvements it did not last  long and just a while after he was back with his feet turned out and on tip toes.

Now we are looking back at 4 years of therapy for his legs and feet, NOT once was an x-ray taken as it was always 'assumed' it was a muscle issue.

On top of this was the stress of the Therapist getting frustrated with Connor and I, as after a few months they thought we were not putting in the work at home. We did do the exercises, maybe bot as religiously as we could have. He had three different braces, that he hated, but that we made him wear.

So what was I told today when he had x-rays taken and the Orthopedic Surgeon came in? His bones in his feet and his Ankles are not aligned with his knees to an extreme that he can not point his feet straight forward without pain. His feet are collapsing in due to the turn of his feet. His calf muscle is so tight he can not get his feet down without pain. So simply said he told us that no brace or therapy could ever correct this. He needs surgery in both feet. The damage is so big that they can't do both feet at one time so we will start with his more sever impacted foot which is the right foot. The first surgery will be set for either April 2 or 9, he will be in a cast for 8 weeks. 

The good news is that the Surgeon is confident that he will run and walk so much better. They will cut the calf muscle as well so he will have a great stretch in his legs.

All in all this is not what we wanted to hear but Connor took it in strides…. I thought we were done with medical stuff and hence I am kind of feeling sick right now.

Here is what I never mentioned in this blog. In my whole life I was always very proud of being healthy. I only went to doctors for checkups and even those I hated. I took and still take pride that I have no health issues worth mentioning and hence only went to a Doctor once last year and have not taken one prescription drug at all last year. The Motrin I used to take for headaches I illuminated last year by starting to juice. No more headaches.

So here you have a Mom who hates anything medical but who hides it well and who bites her tongue and who puts on a smile at every Doctor, Hospital or Therapy visit. I truly can tell you I hate this all more then my son's, who should be more angry at the injustice they have been served then me.

I will not stop or rest until they can enjoy a life that includes health! 

Hugs,

R A C A