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:

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. 

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.

And I get my gear on to not infect the wound- 

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.......................

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-

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



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.



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.



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



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



We have seizures as a team.



We love Christmas in the desert on a farm!



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



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!



Best Haircut a mom could ask for



Three of the most important Apples in my world!



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!

Apple Does it Again

It is no secret that we are an Apple family. In 2007 the world changed when the iPhone was announced. People may think that it is kind of a cliche' statement, but for people with disabilities a whole new world was opened up.

From Autism to blindness, this company has reached into their lives and simplified them in one way or another. When they opened the app store to developers without having the grueling approval process, the options were endless and affordable. 

For us, Tyler has limited movement in his arms, fingers and legs. So playing video games is not happening. Neither is writing. So since the iPad came out, their are plenty of apps for handicapped children and other accessories, make it so that Tyler can write and trace using his finger and use his fine motor skills to do what he can't do otherwise. 

Tyler does have games, I would be lying if I said it was strictly for educational purposes. He finds apps on his own. He works to earn money to buy apps if I refuse to purchase them. Sometimes it takes him weeks. Sometimes I just say no. But he finds what he wants. 

HE FINDS IT. 

Today the new Apple watch was announced. I rolled my eyes and thought DUMB! Then I listened to a brief ( very brief) stint of what it had to offer on 2 or 3 features. But what stole my heart. The maps! 

So get this, Google Maps will work on this watch. It will give you walking directions to where ever you want to go. Since Google maps is on the ground and has photos it can tell you when you need to turn left or right etc. But the BIGGEST: They are 2 different types of vibration. Do you have ANY idea what that means????!!!!!!!!!

A legally blind boy/man/teen/executive has made it to the big apple for a job interview, a vacation or whatever. Has the desire to walk around the city. This person has very sense going nuts with sounds, smells and visually bombarded by times square. So he puts in that he wants to go to Central park. He gets a vibration on his arm where his watch is telling him what direction to take off too. It uses 2 different vibrations. One for left and a different for left!! One last thing on his mind where he can now use his cane and other adaptive pieces of life to LIVE!!! 

I guess the answer for why I like Apple.....

It allows my son to live. To live like any other little boy. To love games on the iPad, ( since he can't play them on a gaming console) to loving books on the kindle because they enlarge as he reads the words. To Parking Mobility apps where they tell us where the closest parking spot is to events. AND gives you a way to turn in those illegal parked. 

I have high hopes that apple will make even more devices that will open the world up even more for our special kids. Maybe next... a computer driven car! 

Cleaning much?

I have to admit I HATE cleaning. There is a mom clean and a kid clean and I think my whole "idea" is that if it is kid clean I can pass with the cluttered mess. I am not a hoarder. I just would prefer to not scrub my walls every other day.

I was looking back on my private blog and noticed that I have kinda been in a depressed funk for a while. I really noticed that the depression was really bad about a year ago and the fertility mess during the summer didn't help anything. Then we got pregnant and I really thought that I would have snapped out of EVERYTHING and just be this fabulous mom and wife and the works.

So that dream was quickly smashed when I realized how exhausted I was. I didn't realize that while I was pregnant with Tyler it was such a crazy time of change that I didn't notice half of what I did this time. I savored every minute and took a LOT of naps.

Now that I am feeling a LOT better and I am enjoying every move, kick and punch that I need to get my act together. Today was spent scrubbing from top to bottom my closet and my bathroom. It felt great. The dishes are done and laundry is almost finished.

I feel bad I wasted almost a year in a depression and a funk. What else did I miss? I realize how much I could have done better. I was sad about something that I couldn't and can't control. Fertility is such a HARD thing to go through. You feel alone and down and nothing feels right about it. But I had to get up and put on my pants and do what I could to function.

Now that I see that I was BARELY functioning now I can start to forgive myself and do a little better. Isn't that all Heavenly Father asks for, is just to be a little better. Do a little more.

A tale of a bad week

We have literally both been going non stop since Tuesday and it feels like we haven't had much of a chance to process all that is going on.

Late Monday night Dallas got an email to met with his bosses for Breakfast the next morning. He texted one of his boss who assured us that everything was fine and that he still had his job. It didn't really put our minds at ease much but we waited till the next morning to see what was going on.

I left before Dallas to get our car to the body shop and he headed off to met with his bosses. I got the car taken care of and got a phone call from D less than 30 minutes later that he was being laid off. He was given a check and a month of insurance and told that they would put his name in with other people that they have been working for. They are going in a different direction.

His boss had flat out lied the night before. I couldn't believe that someone would just lie but we did what we always do and we started figuring out the next step. After several hours on the phone we were able to feel a little more secure for Tyler and Dallas started putting in applications.

Within just a few minutes of sending in his application he got a response back from a TON of places. A few of them are local but the others are as far away as California, Toronto, Seattle, and Atlanta Georgia.

Atlanta seems incredibly interested and he has a 4th interview on Monday. He has a local interview on Tuesday.

He is working really hard at his own stuff and doing a few odds and ends for people who wanted contracts. We are looking at all of our options.

To top off the awesomeness Tyler has been HORRIBLE. He started not feeling well on Sunday and by Tuesday afternoon he was so sad. He got off the bus screaming because they gave him a book he couldn't take home with him. It happened again on Wednesday and it continued most of the afternoon. Thursday we kept him home and took him to the doctors. He has had a persistent cough all winter long. It is like a smokers cough. His eyes swell up and he rubs them like he is itchy. I thought possible allergies until I woke up sick on Thursday as well.

Turns out that the Chronic lung disease that he was diagnosed with in the NICU and the damage to his lungs has given him coughing asthma. He was put on some breathing treatments and a dose of singular.

Friday we were given the night off and Ty had a sitter. We went to a lacrosse game and by the time we got back to give him his meds and get him to bed we were having a major meltdown. He wanted to go someplace else and kept asking for a bye bye. He was hysterical. It took several HOURS to get him to calm down. He finally stopped after midnight and we got ourselves to bed soon after.

For the first time ever he slept in late ( 9:30 isn't really THAT late considering) but I feel horrible today. Lucky for us he was nice and Tyler today. Other than his sleeping tonight he is a happy camper.

We are hoping the next week brings new opportunities but we hope that the meanness and sickness goes away. Thanks for all the well wishes and the encouragement.

Potty Training

Potty Training- Special Needs style

A few months ago I was invited by the local district to come and participate in a potty training class. They will give us the stuff we need to get them potty trained. And it was the same stuff that you can find on the internet with a google search. They had no insight into anything like "What if they can't tell you they need to go?" Or "What if they can't physically pull their pants down or sit on a toilet because they have tight muscles?" No one really had any answers or even decent ideas.

I left feeling frustrated and not ready to try again. I had the bright idea that I would try to get him potty trained this summer and starting on August 1st I would put all my attention into it.

Um nope!

I have failed my child and still have not gotten him potty trained.

In July Tyler exploded with words. He had been working on something and it held up that sweet sound of words. Now that he had words I thought that he would be much easier to potty train.

Nope!

The time came to try our hand at taking our kid to the bathroom. Then His dad got sick ( 3 almost 4 weeks ago) and it took a lot of attention off the bathroom idea. It also threw off his schedule because I was frantic in getting some things taken care of. ( Like we had to run to my parents for a broken A/C and then LOTS of random take care of dad things)

We ordered him special underpants ( yep they are underpants in our house!) and he saw them for weeks. He knew he had to ask for them but he didn't want to. They even had Mickey Mouse on them.

Then the other day he asked to wear underpants. ( Goofy calls his undies underpants and so does Pete so we get to call them underpants.) I thought are you SERIOUS! So he picked what he wanted and wore them. He stayed dry for a while. Then he peed.

Not to long after that he pooped. EVERYWHERE. It was so bad even I gagged and I NEVER gag. He was put in the tub and then he went to sit back on the potty. The rest of the day was just wet pants... all the time.

The last potty trip of the night Dallas fell down the stairs and we had to get him stitches. ( yes.. it was a nightmare and NOT the day that I wanted all of the pee and poo to happen) and Ty was outside running around the streets in his underpants. ( Yep.. I am THAT parent!) So I thought that tomorrow was a new day.

Next day I asked Ty what underpants he wanted ( we have to be consistent right!) and he said Diaper. I so laughed. He even went and got it. Said "Mickey Mouse" and he was right, there is a Mickey Mouse on his diapers.

We did get him to tell us that you go "pee pee in potty and poo poo in potty and toot toot in potty" so we know he gets that you GO to the bathroom. No one ( including his Aunts are above bathroom humor so we KNOW he totally gets poo and gross stuff.

So tonight after already changing ONE poop diaper we were sitting down eating and we whiffed poop. Then a few seconds later another whiff that was not a contained whiff, like OUT of the diaper whiff. I called Tyler over and sure enough hands were BROWN with poop.

I gagged

Marched his stinky butt and hands upstairs. Washed his hands in the sink and dad followed with a bath running and me gagging more. To find out he had poop on his books and the floor downstairs.

As per previous poop issues that we had he had poop from our bottom floor to the top and so I had pulled out the carpet machine and cleaned away. Well tonight said carpet machine was going full force and so was the Clorox/vinegar wipes on his books and anything else his stink butt touched.

I was SO mad. He knew I was mad. He kept Saying "no Tywer" and he was so upset. Dad was able to get him bathed, drugged and getting ready for bed. When I got done we all laid down and talked about getting a big surprise when we go to the potty 5 times.

He kept repeating what we told him. He knows if he goes in the potty 5 times he can have a big " A prize."

So tomorrow is a new day...... Maybe we will poop on the potty.

Or NOT................

What is best

There is always something in the back of my mind that makes me question more than once. In fact ever time a major medical decision comes up I have that something that comes back to question. I wonder have we done what is best?

Most of them came second nature. Or really first nature. In labor at 25 weeks, knowing it was to early there was never a doubt or a wonder or a time that either one of us questioned what was right or what we should do. It was always we will do what we can.

Next came the bleeds and again that nagging thing in my head said are we doing what is best? The odds were against him. A Nurse practitioner talked to us and said that at some point if he was done fighting we would know. He would get infection after infection and sicker and sicker. He would make the choice for us. Till then we fight with him.

And so we did.

There were a million things that we have had to make decisions for. We have had to listen to a list of disabilities. We even said we would be ok with him being in a wheel chair if we had to. The list of choices go on. The choices also come with regular typical kids but these are the above and beyond those. not just the idea to not vaccinate or not bottle feed. It is things like do you give him a blood transfusion? Do you fight for more therapy? Where do we get the money to buy the braces? How do we get from point A to point B?

But we had said we would be ok no matter the outcome. One thing that I didn't know at that time was how hard it would be.

That doesn't change my love for my child. It does make me question a million times over am I doing the right thing for him.

Coming up in a few days is a big step to cerebral palsy management. Botox did a little bit of good but no enough long term. Baclofen is not an option right now so we are stepping it up to the next level.

While upping the stakes we are doing serial casting. We are putting phenol in Ty's gastric muscles to give them a break so that the underlying muscle can start to work better and correctly and his abductors again in hopes of getting is gait or walk more "normal." While making this choice to help him we are also making a choice for him. once that I wonder at times is will HE think this is best.

I feel so over emotional when it comes to my sweet baby boy because he is my world. I have loved watching him the last few weeks. We have seen some amazing strides and Dallas and I have had our very first real conversations with our child. He was and is the love of our life and the reason we get up ( so early) every morning. I am so glad I have him.

I just wish that voice in the back of my head would agree and not second guess anything or make me wonder if when he gets older will he be made at our choices. Will he thank us for doing them. Will they make a difference.

A voice of sanity and a peaceful feeling is what I am looking for this week!

We are doing what we think is best.

Feelings of overwhelming love

This weekend was spent in a time warp. In a place that never changes. In a place that holds very familiar feelings and memories that took place many years ago. It has good and bad memories. It has good and bad feelings but most of all I caught a glimpse of the now.

I grew up in a small town. Not many people around. We still refer to places as the place that So and so lived. Or "Drew's" as the grocery store even when it very much has a name! Everyone knew everyone. I say KNEW because change has come about. I see a change in me.

I moved from Emery County when I was 17 years old. Not even old enough to rent a apartment on my own but where I knew it all. As I would go back to visit, feelings of respect came about for those who taught me.

As I grew older and I had more and more life experience the people were still there and they would change but the town would be the same. Those memories would fill my mind. And once again those who taught me became more and more important.

4 years ago I had a life changing experience. Everything that I knew was wrong. I knew nothing of how to raise a child like mine. A perfect child. A child much wiser and much more spiritually aware than I could ever be.

When I would go visit a few of those well respected teachers would leave me with words of wisdom. Some times it was words of you get what you deserve as I got a quick squeeze, and other times it was you can do whatever you have to do to keep that boy on track.

This last weekend as I rolled into town feelings and memories came flooding back and I saw a glimpse of what my life is.

Ted, every time I saw him would ask how is the boy. He would smile. I would smile and I would say he is good. Ted would then say He is stubborn like his mom. She deserves it. And then he would pat my shoulder and say I pray for him every day. You can do it.

His partner in crime would give me a squeeze on my arm and say it's hard but you can do it.

As I answered my non verbal child in almost every request he gave, as I read him book after book, gave cracker after cracker and got squeeze after squeeze I realized that this is my life.

Ted was right. He is stubborn. And I do deserve it. If he wasn't stubborn I would have lost my child and been asked to grieve his loss. I was blessed to have Ted pray for him along with many others. And I can do it.

President Law is right. It is hard. And he is right I can do it.

Every sound that mimics a words, every look of admiration and love, every small step forward is what I live for. It is VERY hard. I often feel discourage. I often feel alone. The further this journey goes on I am more and more alone.

The alone comes from feeling betrayal from those who I once felt love. For betrayal from those that I feel have judged without knowing.

But I am not innocent in making myself alone.

The flooded memories as taps was being played in a lonely green cemetery in Orangeville made me realize that that boy that I am still carrying is my life. He is my world. He is the reason I believe what I believe.

I know I will be caring for him for the rest of my life. Not just in a motherly love but in a taking care of because he can't do it for himself. I am his only voice right now. I want so much for those in our families to come and learn how Tyler speaks, but again I find myself showing and they move on to something or someone that you don't have to Know their voice.

I am his voice at school. I am his voice at his doctors. I am his voice when he is hungry, tired and thirsty.

But of all those things that I am for him he does things for me. He makes me not alone. He makes me feel loved when I am feeling low. He teaches me that he will get back up. And he teaches me that at some point and in some strange way I am the one being taught.

I love my son. I love his smile. I love his words and long for the words that he may never speak. I love his desire to learn. I love his animal sounds. I love his routine that never changes with his dad. I love that he loves his dad. I love that we are best buds. I love that I show more patience towards him. I love that he is the pure love of Christ and I love that I get to have that as my son!

As Dumbo's mom sang, All those people scold ( and scoff and laugh) you, what they'd give just for the right to HOLD YOU!.. That is Tyler.

He is a hero bearing the scars of prematurity yet soaring in spirit larger than life.

My many blessings

I am so incredibly blessed this week. I have taken a lot of time to reflect on all the wonders and miracles that I have been given. There is so many more things than I can write down. I will do my best.

1- First of the list is Dallas. In the 4 valentines we have had they have been spent with our sweet baby in the hospital. Last year Ty had his EEG done the day before but the weekend off has been in the hospital. I can't even begin to tell you the love and admiration I have for this man. He is so strong and so caring and so loving. He is a solid rock when I need him and a softy when I need him to be. He is amazing. He is the best dad anyone could ask for.

2- Tyler. What more can I say. That little boy has endured more in his short little life than most of us combined yet he still takes the time to love on both of us. He is small in stature but he is a giant in Spirit. He has more Christ like love than anyone I know. He continues to bless my life with Miracle after Miracle. I am so blessed.

3- My Savior. I am so grateful for the testimony I have of Jesus Christ. For the understanding of the plan of salvation and how it brings happiness to us. If it wasn't for the teachings of eternal families I am not sure how I would get through times like this. If I didn't know that Dallas and Tyler can never be separated from me I would be lost.

I think those 3 things right there make me the luckiest and most blessed mom in the entire world.

Miracles Happen

Just Life!

I realized that without being tagged things have been super slow here. Not a whole lot to write about and not a whole lot going on.

We have been busy getting things set up to have me off work and to have Tyler in the hospital. One thing it did make us realize is that we have yet to have Valentines at home together. We started dating right after Valentines and then the first Valentines we were in the hospital with Tyler. The second year we were in the hospital with Ty for his repeat synostosis. This year MIGHT be the year. We go in on the 12th and HOPEFULLY we are out in 24 hours.

Prayers are muchappreciated that we get in and out in such a short time.

Other than that ...Things are going well. Ty is doing very good. He has added dad to his signing vocabulary. He is so cute. He is also trying so hard to take more steps on hs own and is doing so good and if he takes his time can get pretty far.

That is us.. the weather is getting warmer and we are loving going to the park. I have also really liked taking some pictures and look forward to my friends at the Walmart to have their babies so I can practice some more. Here are a few of the latest!!!

Very unsettled

A few posts ago I posted about being settled. While I am settled with Tyler I am not settled emotionally any more. I am not sure how long I have been unsettled. I am not sure if it s a new thing or if it comes and goes but one thing for sure is that I needed help and I got it and I am excited to keep it going.

After discovering some mean horrible things I decided ( after much crying and though) that I needed me time. That meeaning no more enmeshed family. No more over involved family member, grandparents and sisters. No more phone calls, emails or responses to anything.

I am still on the depo lupron and am on my last month and have been way more emotional than I have ever had to deal with. I started some new medication and hopefully that will help me out a little more.

I started back seeing a therapist. She specializes in PTSD and I really like her. She has helped alot even after one visit.

I started weight watchers and lost 3 pound this week. And while out for the meeting made an impulse move and got a pedicure. I am looking forward to a little me time on friday and plan to go tanning.

I have used my respite worker a lot and will use her every day this week. I am getting ready for visitors next week and she is going to entertain Tyler while I scrub, dejunk and make my house more stress free.

I am looking forward to fixing me. To making me more settled and to do what I need to do. I am not that person that my family has made me out to be. Those who have claimed to be friends with me and have hurt me don't be surprised if I don't let you in. Don't be surprised if you find yourself talking to a different person.

I have been a little to hurt this time. ...


As far as Ty is concerned we have been super busy and it won't let up.

Monday we went to foundation, Tuesday I had my meetings and toe painting, Today was PT and we cleaned the bathroom and walk in closet. They are dejunked and beutiful. Oh and we had an eye appointment for Ty. Thursday is OT, and eye therapy. He is going to be working on feeding himself and scooping his food. He can get it in but not scoop it up. Resptie will be here and I am hoping to be done with my room and most of Ty's . I hope that D will be able to do the office this weekend. Friday we drive into Pheonix and work on his braces again.

Don't worry.. I still have to work at night and I am dealing with the mean and horrible people there. Things are getting better though.

I will be ok!! I will be ok!!