Thursday, May 28, 2015

Thursday May 21st- Second opinion Ortho Consult ( Ok turn out to be 5th)

On May 8th we went to Shriner's hospital in down town Phoenix Outreach. We  saw a Doctor that went over the results of our gait lab with our regular doctor in Utah and our physiatrist in Utah to provide another opinion and recommendations to our newest Orthopedic doctor here at Phoenix Children's.

Shriner's is an amazing place and we always have such a good time going there. We are able to met up with a few of our past friends we haven't seen in a while. And of course the Shriner's are always trying hard to make sure your appointments is fun and happy.
#shrinershospital #phoenix #clown

We got the information and the doctor was heading to converse with Dr. Shrader ( the leaving Ortho surgeon and Dr. Andresevic, our current orthopedic doc) over the next week.

I got an email from Dr. Shrader letting us know that they ( Dr. A and himself) that they would like to take Tyler ( His file, not the kid! )  to a conference and use his gait labs and x-rays and movement and all that jazz, as a case study for even more input.

We were gearing up for our 21st appointment with no full information on what in the world we were doing to our child.

When we got to PCH we went in and got into Dr. Emily's office and went in to See her. She said that she was excited to have this case. That she has never coordinated with this may doctors to take care of one little  boy. She also said that Shriner's doctors are VERY protective and that our Physiatrists are VERY protective and want to make sure that everything is written down and we fully understand.

Google will be needed �������� #eighthours #extrablood #lotsofbones #breakinghisfemur #wecandohardthings

This was the list we were handed of what everyone had agreed was the best possible outcome . The last one was just a possibility. They would make it solidified once he was under anesthesia as far as what lengthening we would need to do or not do. Under anesthesia Tyler doesn't fight his tone. So because of this they can tell you what really needs to be lengthened. 

The definitions are as followed for the list above: ( this is a pretty simply definition)
1)Bilateral abductors releases- abductors are the muscles that make his legs open in his groin area. ( this was NOT done!!!! He had great tone and wasn't fighting and his range of motion was amazing!)
2) Bilateral hamstrings- Lengthening the hamstrings on both legs is basically cutting the fascia or thin lining and basically cutting them in half so that they can be lengthened then grow back together. 
3)Gastro lengthening- Lengthening his calf muscles in the same fashion they do the hamstrings. Done on both legs 
4) Right foot column lengthening- His feet are deformed a lot and of the work done was to correct how his feet are and how to make them not have contractures. 
5) Left foot Lengthening: same as above. 
6)Right femur rotation- Break his leg and turn it correctly
7) Right Tibia rotated- same as above and rotated his tibia. 
8) Right rectus femurs recession is the muscle on the outside. Basically the thigh. However, this ended up not having to b done. 

We then headed down to the clinic to for pre op stuff. His nurse there was so so terrible. I wish we could keep the nice nurse that was still learning her job. She was fabulous!!

This was a very long and a very information filled appointment. It was exhausting and the start to  very long week. 

Wednesday, May 27, 2015

Laser Beams and the Aggie Doctor

We ran into the podiatrist that we have been seeing and have been doing a laser treatment program on his foot. We have been going much more frequently than the average person because we need it to close so much faster. We had exactly 2 weeks. We are not down to 4 days.

We saw some VAST improvement over the course of the first week. We are looking amazing today and have one more visit before our final appointments on Thursday and go in on Friday. But this week is looking to be a HUGE stressor. Did we mention Tyler is done with school on Thursday but he has appointments ALL day, so he is done a day early. It almost got our surgery to be rescheduled.

#dayone #daythree #pressuresore looks so much better

Day one and day three Pressure sore

#lasertherapy #lastone #muchbetter

The last day ( Thursday May 21st, the day before his surgery ) Trying to get it all under control enough to keep the surgery on the books. 

We are so thankful for Dr. Newswander that we keep going back. We will see him after surgery if we need to for any reason. He is a GREAT doctor!!

Biggest BONUS of all- He is a TRUE blue AGGIE- 

Sunday, May 24, 2015

Orthotic Specialist- Bret

During the mess with Tyler's feet we went to get a temporary brace on Tyler's feet. We have the BEST place to go. We were first introduced to Bret and Barb when Ty was just a baby. Shriner's used them when we first started using outreach. They did our very first pair of Orthotics.

I called Bret and asked for ANTHING that would keep his foot from turning and making the foot worse and make him walk on the top. Bret quickly worked us in and we had a great experience yet again. We love them .

#nothingchanges #orthoticsspeacialist #lovebret #lovethelittle

#teamtylersmiracles getting his latest set of braces from #Bret #orthoticsspeacialist

The brace was temporary but we hope seeing these people last forever11

Wednesday, May 13, 2015

Fun Friday- With Decubitus Ulcers on top

We try to make every Friday something that Tyler and Grayson can work toward. Usually it is a good activity like Bowling or swimming or some place or thing they have worked towards doing as a family. If he has days at school where he won't do anything or he yells ( turns out he yelled at his teacher and told her to shut up last week at school haha!) he doesn't get to do his fun Friday activity.

This last Friday we thought we would go swimming at a heated pool. He had to work for it. He almost lost it.... twice. And had I seen the paper that he yelled at his art teacher I would have said " Um no!!" but I didn't.

So after Shriner's Hospital we headed to the pool. We also picked the COLDEST day of the week to go but we had a good time. We took our neighbor friend, Sawyer. Grayson adores Sawyer and Tyler is a fish. He just goes and goes and does well in taking care of himself on the slides.

#pool #freezing

My sweet Grayson who just wanted to run and scream in his Paw Patrol Pants. 

#pool #funfriday #freezing

Tyler and Sawyer. Ty was climbing back UP to the little slide.

Tyler soon decided that the regular slides were not enough for him so he asked to go down the big twisty slides. So him and his worker, Ciera, climbed up to the top 5 times and and he went down and LOVED it! The water was not overly warm but it was heated. But it was only 77 degrees outside. For us Arizona people, that is COLD!! We were super duper cold. Once Ty got cold his foot instantly turned in and he started walking on the top of it again. He was dragging it and just walking wrong. I carried him a bit, and Ciera carried him a bit. 

A side note about Ciera-
Ty is amazing. He wanted to go up on the huge slides. So he climbed the stairs five times to go down. He got freezing cold but wanted to go in the other part of the pool. This is his worker. She has become like family. She cradled him and swam him around

Ciara joined our little family over a year ago. We made a schedule with her that worked for all of us. And for some reason we have embraced having her here and we feed her for dinner and we do our night routine after we all have had dinner. So we sit as a family with her. She prayers with the boys, she eats the food. She helps with the boys and she is fabulous with Tyler. She climbed into the pool with him and cradled him around and just talked to him and did all that he wanted to do.

I feel truly overly blessed to have her working with our family. In fact, we have always been blessed. The last 2, Kelsey and Brynne we have LOVED them as well. Kelsey was just in a place she needed no  extra stress or hours and Brynne needed better and different hours. But for Ciera we work for her. We have hired some help for Ciera this summer but no one can take care of Tyler like Ciera can .

After we got home from the pool. Ty said that his foot hurt, but we got dinner going and did our dinner thing and didn't think much of it

Mother's day weekend came and Dallas asked me if I had seen his foot. I said I had not. I didn't look at it till Sunday and I freaked OUT!! His entire foot is open and back up to worse than what it was 2  weeks ago.

So that brings us to the Pressure sore.

When Tyler's feet got cold, he started dragging his foot and he peeled off a good chunk of his foot. So back to the podiatrist we went. we was really worried about it. But we went in and they opted to fix it with a laser treatment 4 times in the next ten days to get it to close faster. We do Antibiotic ointment and some bandages, after school we leave it open air so that it can harden up. His poor feet are truly the only thing he complains about.

Round 2. New sore on his toe this is bad

This is the new sore. The Dry patch and the "spot" was the big one from yesterday's post!

So, this week we are praying that the wound heals fast for Tyler's foot. That we can do our best to keep it small enough that our surgery won't be postponed. 

I think we will keep our Fun Friday to bowling!

Monday, May 11, 2015

Lets talk about Pressure sores

I am a SENIOR at ASU here in Tempe. I am online so I am able to do most of my homework at night. I haven't done so bad considering all the stuff that goes on in our world. Just therapy alone takes up 3 days and appointments take up a few other days and a 3 year old takes up a lot more!

But my nights are filled with homework and reading and writing and rewriting.

After finals though, I can blog. Which I LOVE!

So tonight we are going to talk about Pressure sores. That is right decubitus ulcers.

The last few months ( OK maybe year)  we have been dealing with one on our foot. It stinks!

The curve of his cute deformed feet are actually a bony contracture and it causes pressure. The more we wait on his surgery the more contractors he will develop. But we have gone in to have this pressure sore looked at a few times and have been able to stay in office with our pediatrician. With surgery coming up, Dr. Emily ( the Ortho) needed clearance from our Pediatrician, neurologist and neurosurgery. We got 2 of the 3 super easy but needed a full check up with the pediatrician.

Dr. Carrol didn't love the look of our current pressure sore so he sent us to a local Podiatrist to have it taken care of. He said it would heal faster and that he might be able to get us a hard boot for Tyler to use so he wasn't walking on his foot. We didn't need the boot because we got our brace ordered from Bret ( the next post!!) and so we really just needed his sore taken care of.

In order to have surgery no open wounds can be on his body. So this was a big deal.

This is what his sore looked like the second day and before we saw the podiatrist:
First photo was yesterday. #pressuresore and blister. With little to no walking today, second picture is #pressuresore that's on his good foot ��
This is what our pediatrician saw and this is what I saw and this is what makes me have anxiety. this is not OK.  Pressure sores can be so so bad. 

Saw a podiatrist today for #tyler had to shave his foot down to remove the callous on his pressure sore. #hedidntevennotice But tonight he asked when Heavenly Father was going to fix his feet because the #terriblepalsy makes them #hurt #brokenheart #thisi

The podiatrist took a scalpel and literally shaved off the dead skin layer by layer until he got down to fresh skin. He showed me how to clean the edges every night, how to file it down and how to fix it so that we have little to no rubbing on a regular basis so that he can still wear a shoe and brace. Until we get his feet fixed I have a feeling ( even after) that this will be an on going issue.

At night we get out our "boo boo kit" and work really hard to do our best so that Tyler doesn't cry over his foot hurting. Ironically this is about the ONLY thing that he has continually talked about as hurting. It is really sad.

Me and Dr. Grayson gear up to take care of these feet.
This sweet #drlove helped by bringing in instruments. And writing on bums. #wecandohardthings

And I get my gear on to not infect the wound- 
Mom and dr grayson putting on bandages. Elmo is a must #cerebralpalsy #terriblepalsy #fundraiser #pleasedonate #share

The pads are to keep pressure off, the band aid is so that Tyler will stop crying. I then make a magic spell up and put on magic socks to keep Tyler from pulling this stuff off. It rarely works but it is a start. 

Last week we got Tyler's foot clear! We were down to a PIN HOLE and we were down to using an emery board on his feet only. No edges were needing to be cut. Thursday we were discharged and we were to call if anything came up or we needed a shave in order to look even better.

Today.......... WE HAD TO CALL!!!!

To be continued.......................

Sunday, May 10, 2015

The reasons I love Mother's day

My mom never really loved mother's day, so I have always just grew up avoiding the day. After I had kids, I still felt the same way. My first mother's day was when I as pregnant and it was NOT an OK day. After that it was much better. Dallas has always tried really hard. I struggled during the times of infertility and I avoided the day. Dallas, again, tried really hard. I, however, did not.

This year I made the personal goal to ENJOY mother's day and what it means. Yes, I gave birth to 2 little people. Each of them a Miracle in their own respect!  Tyler, 93 days early. Grayson, infertility for YEARS before we finally maxed out all of those meds and figured we would be pregnant with a 9 headed mutant. But nope, just one heart beat in that little chest!

So these are the reasons I love Motherhood-

#shrinershospital #phoenix #clown

At Shriner's on Friday- Grayson was afraid of the clowns so we became our own!  I love them both!

A little cold for #1. A little love for #2.  #bestbrothers

Grayson LOVES Tyler. He is giving him rubs. Tyler had a seizure and was asleep on the couch. He had a cold and Grayson was rubbing his face.

#brothers #frenimies #mybiggestblessing #stayawayscorpions #stayinnocentforever

We have cam pouts in the "Tree room" and we like it!

Brother's hanging out, doing hard appointments together. Grayson's stuff was a lot rough. But we did it.. Because we can do hard things.

'And a much better less claustrophobic idea.

Making a tent with mom while Tyler is gone. BEST DAYS EVER!

Instead of taking our friend in our car we ride our bikes #beckythebike #ohmygoshbecky #bigbuttbecky #bffs #sunbeam #dudewheresyoutshirt

Having close friends in the neighborhood that love each other. We LOVE the Talbots like our own family. We love them so much!~

Another post #seizure crash.  Ugh

We have seizures as a team.

A velvitine rabbit

We love Christmas in the desert on a farm!

#snowballfightarizonastyle #paper #hopekids

Having snow ball fights with paper, where we stay warm!

Up close at the #temple to see the nativity #mesatemple #family

Being a team means we can't see together. We were up close and personal with carvings from Italy. Our brother can't see, we do it together.

Trying to figure out this sleeping gene.... we just don't have that part together.


Riding together in a train!

Getting a vacuum hair cut. #bestmomever #feltlikesmassage

Best Haircut a mom could ask for

I am madly in love with these three people. #missourdad #appleshirts #apple #wwdc #hadtowear #graysongram #tylergram #ilovethem

Three of the most important Apples in my world!

#becauseofHim I have two miracles. One we fought so hard to keep him here when he came 15 weeks early. The other we struggled with four years of #infertility to be blessed to have him. Even when they are hard #theyaremineforever #eternalfamilies

These 2 are the reason that I get to celebrate mother's day. Though I don't have enough time in a day to show them that I love them with all my soul, I do! I am thankful for the 3 boys in my home. Thankful that I am the mom of 2 of them and thankful for the Mother of the other one!

Happy Mother's Day to my Mom and my Mother in Law. To strong women dedicated to their families. For that we are both forever thankful.

* As a side note, our neighbors in Utah just gave birth to their miracle baby who is now in the NICU awaiting heart surgery. With some other genetic issues going, they are really struggling. For those on my page, please pray for them. The mom should have a Happy Mother's Day amidst the hard stuff too!

Friday, May 8, 2015

A Special Kind of Mommy Guilt

10 years ago I was naive. I thought when you got pregnant, you had morning sickness once or twice. Had a gorgeous glow. Tons of energy to finish your semester at school or keep working till you popped. You birth a baby, hang out and be the mom for a few months, then got back on with life. You find sitters to finish school or work or you become a stay at home mom. You go to play groups. You hang out with all the ladies in the ward/area/family/ that have babies the same age. They grow up together and become friends, you become friends with the moms of these picture perfect moms because you spent HOURS at the sports complex with them, and your life lives out happily ever after....  and then those Babies grow up and  they get married, have more babies and the cycle continues-

BUT-  That didn't happen ... twice.

Though my pregnancy with Tyler was not text book by any means, ( OK at all!)  it changed everything about my life and how my life would be. There were lingering thoughts that a baseball game or a lacrosse game, but there were also bigger possibilities of wheelchairs and life long limitations and disabilities. There was also a part of me that always thought there would be a miracle and that we would be skipped over and he would be just "Fine." We were all praying, fasting and doing a whole bunch of everything that you thought of that would make him "fine." But that didn't happen either.

The ride of this Mommy guilt was just beginning. 10 years later we are still riding. Not sure we are up right now or just on a coast, but we haven't gotten off the ride yet.

There is a few steps of this mommy guilt that as Special needs moms ( or chronically ill) go through. At first Tyler's life was a fairy tale. We tried to have everything upbeat and that he was doing great and wonderful. The few times it was hard and not ok. But no one wanted to not see a miracle. For every bad, there was this knife turning inside of me. The one that made me rethink everything. Did I do something, did I cause this? What could I have done differently?

Denial. I kept asking our pediatrician if she thought that Tyler had CP. She would use kind terms, like higher than normal leg tone, but no. He didn't have CP.

When we would go into a new specialist or the NICU follow up and something would come up, no one would tell me, no he doesn't. So we just went and worked harder.  I put everything I had into helping him reach milestones. EVERYTHING. I fought so hard those first few years.  I felt so much guilt that I did this to my child.  That I was going to figure out a way to work hard enough that I didn't feel guilty.

Every time that we would get to meeting a milestone I would do the micro analyzing of every single detail. We would count super fast so he was sitting up for longer periods of time. Or he was standing up or he was doing this or that. It was positive, positive, good ALL the TIME.

It wasn't until he was just over 3 and still not walking on his own ( though he was doing more than what we were told he would do) that we were sitting in the neurology office of Dr. Bernes. He came in to a little boy walking around the room holding on by one finger, walking around the office. As he was talking to us, unsure of why we there, he said " You know he has CP right?" I was FLOORED. It was then that I had to face the life long disability rights in the face.

There was the guilt again. What did I do? How could I do it to my child? What could I have done?

Was everything rose? No. Not so much.  Honest? We tried. I truly wanted the miracle. That instead of always getting the bad part of the .1% We would be that .1% that would be a miracle.  We would beat the odds.

The further behind we got brought on the next part of the mommy guilty or what has now moved into the broken mom role.

I would avoid places and people who are pregnant, people who just want a "healthy baby" and people who were just unkind with their words in general.  I couldn't handle it. The baby part was to much for me and I would literally leave any event. Even family events.

Now that the journey is well on its way, I now avoid specific "Types" of special needs moms. I can't handle the constant telling me that because our diagnosis isn't exactly what they have, that we can't be friends. Or that we can't agree to disagree and just put down the judging from every side ( even mine!)

A wise women once said, "Can we lay down the right to COMPARE and try and find something to share... SOMETHING anything" I took that as stop the mom shaming, stop the "you think your kid is sicker than my kid" shaming and just agree to disagree and who can help you find the resources for your child that you hadn't thought about. Maybe a Hydrocephalus mom has a resource for a CP kid or a Autism mom has some ideas for a out of control 3 year old. But you ( or the mom) can't put down the difference to just allow us to SHARE and hold on to SOMETHING that is the same. There is always something that we can use to empathize with each other.

As the ride progress we found something that Tyler was good at. And we ran with it. We accept that something is ok. We accept that something will make it work and he will be ok and we make it ok. Everything from a chair, an iPad, or do we teach him braille or to use a stick. But whatever it is, we push him. He isn't a quitter.

We started to focus on what he did well and stop worrying about making him "mainstream" and "normal" and allowed him to be "extra ordinary" and the super hero kid he is in his own environment.

Dallas and I do grieve. Both of us. But not together. We do it in our own ways and in separate times. Usually when one is strong enough to carry the load, the other is weak and breaking down. It has gone this way for 10 years . We don't have a choice but to o it that way. We have 2 babies to take care of.  We do it that way because we have to. We need each other.

Does Tyler grieve. NO!! He sees himself for what he is, just a Boy. A  Super Hero and powerful person. He draws people to him by just being him. He has an old soul. And he has an incredible tolerance for pain. He has courage, he is brave, he is smart, he is cute and he is VERY VERY kind.

So what does this mean?

As a mom, and on the eve of Mother's Day weekend, we go into the weekend where we are thankful for our own mothers, but also celebrating with our own motherhood, I am celebrating my children. Both of them are miracles in their own right. Tyler, we fought to keep him here with us. And 5 years we fought to have Grayson.  Nothing makes me more proud than to say they are mine. There are downs and there are ups. There are times we coast. The guilt doesn't go away and at this point it probably won't EVER go away, but the drive to be the best we can be, will always be there for all of them!