What a busy week

I don't have much information this week but thought I would stay  caught up. I hate being behind and I know some people enjoy stalking us, so I better give them content to keep staring.

We had a TON of appointments last week and way to much extra stuff that I was over my head. But as we took a deep breathe and relaxed we started to get a few things done.

Ty has finally gotten into therapy and we are in full swing with  ALL THREE all week!! We love it. We see his Physical therapist on Tuesday afternoons and his respite girl takes him. He loves it. He works harder if I am not there. We do have to bribe. Massively bribe.

Wednesdays we have Speech therapy in which we know that Grayson won't be getting a nap so we try really hard to wear everyone out and make it home ASAP! He gets to hang out with me at therapy and he doesn't love it. I think all therapy places need to offer sibling courses while we hang and wait.

Thursdays Ty's occupational therapist comes to our house. We LOVE LOVE LOVE it. I haven't done home therapy since he was a baby. We stopped having home therapy when he aged out of the Early intervention program. I love it. Not only do a get a few minutes of them playing and no sound in my house, but Ty loves it. The past few weeks they have worked on using utensils, dressing and playing angry birds. Not on a computer, but real angry birds. Grays likes to take advantage but mostly he just comes and goes.

This last week we had some horrible experiences that were turned positive by an outpouring of service. It was so wonderful to see something good come out of something SO BAD! It helped us look forward to our visit with our grandparents and Aunt Ti Ti.

We had some wonderful adventures with them.

Oh and I got my grove on.... LITERALLY with my old flames NKOTB and the fab Nick Leche!


Posts with photos coming up.



I forgot that we instagramed our therapy session. We did get a nap in because our therapy was done at noon. But it was not a long nap. But that is ok!

Next up, A birthday boy!

A snippet of our behaviors

When baby Grays was just a few weeks old we went back to therapy, full swing, all three. We started with Ben in July. Tyler loved going and really liked the location and actually would participate. We have been going regularly until December when Ty got sick. We took almost the month off and started back right after we had Phenol.

At that time is when we were in full swing of our mean horrible behavior that has had us all in a bad mood. This is what our days have been filled with. Before this Ty never even cried at therapy. This behavior was happening ALL day, all day at school and in the car when we would travel somewhere. It has been VERY hard.

Ben, his therapist, is truly an amazing therapist and I am so glad we have him. He has worked very hard on getting Tyler stretched, moving and working hard. Again, this is NOT normal Tyler behavior. He is always so hard working and willing to do anything, but not since his seizure.

The last 2 weeks he has been somewhat back to normal. His behavior has been so much better at school. He has less anxiety and he is and has been able to calm himself back down. He has also been willing to participate in school AND in therapy.

One of the things we have been working on, even during time of crisis, has been his hips and his hip placement to help his gait. It was being worked on in the first video and also in the second. Same pressure, same movement but a TOTALLY different child. In fact, the second video we have a therapist we had never seen before, yet his attitude is all Tyler. None of this crazy mean one from the months before.

In this video they are changing the pressure on his hips so that his gait is altered. He is also walking on an adult treadmill for the first time in his entire life. Our awesome team of therapist ( Ben and Bryan) are talking seriously about ordering a set of theratogs for Tyler. They are pricey and of course insurance doesn't cover, so we have to think long and hard about spending the money. Not to mention figuring out where to take that money from. It would help his gait, his bones and possibly save his hips. But the best part, by FAR is how well he is doing. We had not ONE drop of tears. We were "winning a race" and playing basketball and being a very hard working and happy kid.

On the ride home, not a tear when baby Grayson started to cry. Not a tear at the cookie store and not a tear when we went to see Dad as the coach. Not a tear when we got home and not a tear for bed time. It is almost like he went to bed one day as one kid and woke up as another. We have started to ween him from his keppra and that is almost complete. One more week before we are totally keppra free but the good behavior started even before that. ( Making me wonder if it REALLY is the keppra) But none the less, it has helped lift my spirits. It makes the days less tiring. It makes me so excited to have Ty back and  that we can go back to how things were. Enjoying the day and time that we get to spend.... together... as a team.

The Bowling Alley

When Dallas went to New York Ty and I went to the bowling alley with my sisters kids. I wasn't sure how it would go so I wanted others to come to help him get excited. We called the "kids" and we stopped by and picked them up and headed in.

Tyler loved it. There was an arcade there and he loved that and really liked bowling. So much so that he hasn't really stopped talking about it when he asks ( like he does daily) "where are we going today?"

Since summer is winding down I called my sister and asked her if they wanted to come down and go to the jack and Jill bowling alley here. After they hit up their weekly trip to Seven peaks, they headed down to pick us up.

This bowling alley ROCKED. We bought our lane and game and headed into the arcade. Ty knew what he wanted to do. We threw the balls and then headed to the wheel of fortune game. Ty won the jackpot and ended up winning 250 tickets. He kept racking up the points and the tickets. At the end we got all the boys the same thing and gave the remainder of the tickets to Lexi.

Of to bowling we went. We ordered our pizza while we started and headed off to play. Tyler LOVES bowling. The last activity I have ever thought he would like. He likes it so much he doesn't really care it is his turn. So if someone isn't on their feet he picks up the ball and throws it down the lane. Even without one of those ramps he still sends the ball flying. Lucky for me, Tammy was there and she was nice enough to let me just watch and feed the baby. A few times she wasn't fast enough and Ty sent the ball rolling. With only a few frames left Koy was tired of playing so Tyler happily took his turn too!

When we were leaving he was crying because he wasn't done yet. He was so sad. When we walked outside he asked if he could go to grandma's house. He was melting down. He kept asking when he could go back and play. So we called grandma when we got home and he cried that he couldn't go to her house and couldn't go bowling.

I guess we will be adding that to stuff Ty loves to do. Next time I think I will just pay extra and give him his own lane so he doesn't have to share!

The Scooter

Tyler has a scooter. We bought it at the beginning of the summer. We bought it before we had a loaner bike. He would take the neighborhood kids scooters and try so hard to use it but would fall over and not move at all. They only had 2 wheels. So we found a radio flyer with 3 wheels.

This particular scooter was different than the other 3 wheel ones because the double wheels were on the front. Not a huge deal but he had to stabilize a little. So we left the scooter in the house where he could "practice" and then when the time came to go play with the kids he was able to do it.. a little bit.

After Grayson was born we started taking daily scooter trips outside. After the morning feeds and breakfast, I will send Ty out to ride his scooter and play in the front yard. He loves it. He plays hard. One thing that I noticed though, was how hard he has to work to get the scooter to go.

He has learned a great deal about starting and stopping. He tends to stop by falling wherever he is. But he isn't hurt. He just pretends.

It takes so much effort for him to stay up and then to turn around and get up to the top. But he tries. He tries so hard. We love him for trying so hard.

Look at his toes. No matter what we do we can't get them to not drag. By the end of the morning we have blood, but no tears because he is so brave. ( we get blood in the house right now, we have a lovely pressure sore from our shoes.)

What makes my heart melt more than anything is how hard he tries and how hard he works. No kid should have to work that hard at doing something so great, as riding a scooter.

Starting therapy AGAIN

The last week was filled with therapy re-evaluations, and new schedules to pack in our weeks. We have one more and an appointment and one more evaluation that I am not sure we will even qualify to get the service.

The OT appointment was really good. I LOVE the new therapist. The sad thing, she didn't even last a year! Though Ty needs OT she is leaving so we will probably only see her one time before she leaves and we don't know when a new OT is going to be there.

Because Ty is sometimes hard to understand we were starting at square one. Luckily, this new therapist had seen Ty when she was a student so she remembered a few things and was amazed he was talking. It made it much easier to do therapy when he was able to tell her some things.

We did shapes, and she timidly asked if he knew his shapes when he nicely asked her if he could have the "Octagon please!" After that it was a one track basketball mind. He did really well and he does need about 2 hours of OT a week but since he is getting some at school we are opting for one hour every other week so we can do PT as well.

The PT dude... is kind a Prick. ( I wanna say douche but my mom would get mad) He really is a jerk and I dislike him VERY much. I requested a new one but that didn't do anything so we are kinda stuck. Thank goodness he has a student with him that is doing all the work.

First, he is really condescending. I never EVER feel like he listens to what I want or that what I WANT is not a option. He doesn't want limits set on Tyler but sets limits for him saying he can't do this or can't do it good enough to count. Second, NEVER tell a mom that they are not sure of their kids ability. Trust me. I can tell you what we can and can't do and be realistic about the rest. So back off!

Lastly, NEVER,ever,ever, EVER ( did I mention EVER) hint to a mom that she is not "dedicated" to her child because we had to stop therapy or decided to stop therapy after a surgery. How do you know what our life is REALLY like. You go home at night to your "normal" family and we are expected to go from therapy and spend 3 more hours IN therapy at home. OK. that seems realistic.

As we qualify for weekly appointments but ,well he will not see us if we see any of the 2 therapist that we are required to see. We would need a day when it is JUST him. Because he doesn't feel that Ty can participate in his activities if he has anything else. We are forgetting the fact that we LIVE IN LEHI! That is a 55 minute drive. Not to mention the cost of gas is awesome and the therapy for speech is 30 whole minutes. Whatever! I think we will do what we can.

So needless to say therapy was a beast. I left super discourage, late and pissed off. Almost in need of calling my OWN therapist. The worst was when he PROMISED Ty he could take home a bike if he pedaled 4 rotations on his own. Ty got 3.5 so he didn't get the bike that was promised. I WAS PISSED. After much contemplations I did call later and had them reconsider and we were given a loaner bike this weekend to take for a few spins. Looks like we CAN do it.

When is enough enough?

When we made our surgery appointment and it ended up being rescheduled it really threw our therapy pretty much out the window. We had been up in Salt Lake once a week for the past year. We get all of our therapy at Shriner's because our insurance will not cover therapy services for Tyler. ( The reason: He has a life long condition that won't be "cured") The therapy makes him way more functional so we go.

Therapy at Shriner's is intense. It lasts for a better part of the day. Ty is physically exhausted, he is mentally exhausted and he is frustrated. I am tired, and I get to listen to all the ailments that plague Tyler by ways of his screaming and anger.

After the mess up with the casting we were behind schedule and had on way to fix it since Shriner's is booked. We had all his stuff set up for the correct surgery and nothing for the pushed back so we had to cancel. We then missed the month sign up for July.

So we took the month of July off. In the month we took off Ty is talking. A LOT! I can't wait to take him back to his therapist and have her hear the words we are hearing. I can't wait to get him in to get some physical therapy after his shots. It Sure seems less productive when we haven't had casts but he is still much looser.

So, in August we go up once that month and then start our weekly treks again starting in September. Just in time to get him into school and a routine established.

When is enough enough? When no one wants to do it any more. And as long as that doesn't want to do it any more doesn't last too long. Remember, we are their advocate and it is their life. Yes, it changes OUR life but we do it to make their life better.

So take a break, take a step back. Enjoy the ride for a minute. Take a deep breathe and FILL UP THOSE appointments.

Shriner's Hospital and Rifton Bikes

Today marked the first official start of our Summer. Ty has been out of school for a week but due to vacation/traveling and grandma and grandpa's house we haven't been home. Since we didn't qualify for summer school Ty is ALL mine for the summer.

One of the things that I have the hardest time with is getting everything done ( house cleaning, entertaining etc. etc!). Part of it is being lazy but the other part is Ty takes up a lot of my time. Just like any kid, any time you do get something clean they are quick to unclean it. Unless I am entertaining him he is trashing EVERYTHING. He doesn't play on his own at all. ( I guess you can thank his non imagination play!)

So I decided he MIGHT benefit from Story Time at the Library. We don't live that far from the Library so today we checked times, called and made our appointment( limited space) and we left and walked to the Library. Tyler loved it.

We came home, ate lunch and off we went for our weekly therapy in Salt Lake City Shriner's hospital for Children. Therapy today was just PT. Our Speech Person canceled while we were there. Kind of disappointing given that we have a bunch of words. FINALLY!

One of the things we are working on with Tyler is balance and distance. He can't walk on his own for a long period of time. Though he tries really hard it just isn't possible. He holds onto one of our hands for stability. If he didn't do that, every 500 yards or so he would/does fall. Hence the broken nose and stitches a few weeks ago.

One of the other things we have thrown in to the mix is riding a bike. Shriner's has this really cool adaptive trike. It is big enough that he would be able to use it till he is like 150 pounds or more. At the rate we are going he would be 20 before he out grew this bike.

The trike is called the Rrifton. It is Lime green and awesome. I seriously LOVE this bike. It comes decked with foot extenders so he can easily and quickly pedal and man can he go. BUT WAIT... there is a catch to the bike. $1500 dollars worth of a catch! ( unless of course a nice person knocks on my door with a check!!)

While I would pay that in a heartbeat it isn't going to happen. But the best thing about Shriner's. It's FREE! Now don't go and get over excited on me. We don't have one yet.

The Catch- The REAL catch!

There is a waiting list.

AND Ty has to show he is interested on his own ( check SORT OF) and be able to do 5 rotations on his own. ( check, check) This has to be done for several PT visits before we can be put on the list. I am not sure how long the list is but don't you think it would ROCK for this kid to have THAT bike!

After riding the bike Tyler was pretty spent. When things are hard it is like pulling teeth to get him to participate. We did and we kept pushing. Our therapist, Mark, is really good about standing firm and not letting Tyler get his way. He never comes right out and says it but he thinks Tyler is spoiled. ( I know... not my child) He is constantly telling me how much Ty would benefit from "other" children, like a sibling. ( Gee really! Thanks... and if I had a DOLLAR for every doc/therapist/stranger on the street that said that to us, I wouldn't have to wait for the dang waiting list for THAT BIKE!)

When therapy was over, we visited the prize box. Ty is slowly getting not impressed with the box but he was happy with a Tinkerbell sticker book. He told Esther "BYEE" and off we went.

What makes Shriner's the " Almost happiest place on earth?" It is run solely on donations. The Mason's and other private donors give to this wonderful place and their donations make it so that kids like Tyler get to have therapy that would otherwise be to expensive and therefore non-existent.

In recent years, the donations and cost associated with the hospital and the care has gone up. They will now charge your insurance BUT what your insurance doesn't cover they will pay for. You never feel obligated in any way to pull out your debit card and pay a balance or cry at night because you can't ever pay them enough.

Instead we find ourselves thanking those who are able to donate and DO donate. It is because of their charity we feel that Tyler is doing so well.

What do you think of the BIKE!!?

A whitty post about Therapy

Ty attends therapy in Salt Lake City at the Shriner's Hospital EVERY single Monday. We usually get 3 therapies but today was just 2. But today we made excellent strides in BOTH! Our incredibly expensive health insurance won't give us but 12 visits a YEAR for therapy so we need the other "options" given at Shriner's.

The bad part of that, I don't LOVE his speech. But will take it because, well, we don't SPEAK! He struggles with participating with her and he doesn't like her to touch him.

He did really well with his transition. So I really felt that today was going to be a good session with her. I went in with him initially to show her the Alphabet song he sings and so that she can hear the vowel sounds we are working really really hard on. I always walk away with her saying " That's nice but he is is missing some key points here." Like I don't realize he is not getting "THE WHOLE WORD"

Tyler wanted to play the games she had set out and he really likes the Barney match game. He still won't let her touch him to have her show him how the word sounds so he will whine as he plays but overall he is doing really well.

OT transition was the best we have had. Chris really plays into his sensory issues. So he gets LOTS of swing time, jumping and that makes it easier for him to sit down at the desk to do his fine motor skills. He did great today.

Today was a good therapy day. They don't always go that way. Savoring the days that DO go that way!

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.

The LAST eve of Prematurity Awareness

I have slacked the last half of the month because life with my baby ( that is a big boy) got hectic and nuts. Its all been a bit overwhelming and a little nuts!

His sleep study results came in the mail but we have a follow up on Thursday so I have lots of questions before we share the results. BUT mainly he drops pretty low on his oxygen and needs some requirements to keep them up. We don't know what it is yet but he wakes up about 5 times and hour from not breathing and wakes up 5-7 times and hour for his legs moving. His average sleep is about 6-7 hours.

We are still doing therapy at Shriner's and hope to be able to get Tyler on disability soon so that his insurance will cover someone a little closer or even as close as Riverton at the new hospital. I am hoping that the shots and the casting will work really well and we can relax a little and the therapy will help the kiddo out.

His speech is coming along really really well. He is doing most of the alphabet with sounds. There are still a few he hasn't figured out but he knows what they are and can match them. Its getting a little easier to communicate but we are still limited on his words. He can't seem to put them all together to form words. And some of the sounds are just sounds that he is imitating the SOUND but not how it is really said. ( that probably doesn't make sense. A example is the sound the F makes. He sounds like he is making snot and boogies.)

We are getting our second round of h1n1 this week ( hopefully) and have been battling a consistent battle of strep. Tyler has been surprisingly fine but Dallas keeps getting it. We don't know if Tyler is the carrier or me or Dallas for that mater but man I think we are done with it. His little sister who is staying with us came home with it today. But Tyler and I have seemed to be ok ( for now!)

I will have to post about Thanksgiving. I am still recouping my emotions from getting to see Max and Morgan and Barrett and Chantel and having them gone. We are gonna miss them.

Stay tuned for more Holiday fun and some awesome pictures from the weekend.

Every boy needs a Radio Flyer

Birthdays didn't mean much to me until I had a baby. Then the only thing important to me is making Tyler happy. With that in mind every time his birthday rolls around and me and Dallas get to give him gifts I try so hard to find something that invokes a smile and HOURS of fun and joy.

Last year my sweet little man got a basketball hoop and a chair. That chair is the grossest most loved piece of furniture we own! This year I went in search of the perfect "chair" to give him.

I found the perfect cake for the perfect party but couldn't think of the perfect gift. We went to the toy store and once again found a perfect "gift" but it wasn't "the chair."

I wanted to get Ty a bike but knew that his Cerebral palsy wouldn't allow him to hold on and still ride at the same time. I researched and researched and found a good alternative at the toy store.

A Radio Flyer

Dallas put it together tonight and some little boy LOVED it.

He really really liked being able to ride the bike.

Though we need to make some adaptations to the pedals and it will take a lot to get him to ride it on his own he was such a big kid and he wouldn't stop smiling.

He was pointing up the street and telling his dad he "wanted to go there PLEASE."

The mom had tears in her eyes and she watched him go. Flying up the street as fast as our feet would take him. As we would slow down and turn around he couldn't get his hands up fast enough to sign "more please."
The simple joys of life. The simple joys a 3 wheeled radio flyer will bring.