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!

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 it is good

Have you noticed that when things are good they are GOOD. It seems that sometimes there is no in between. We have had such a great few months. He has had some great strides and some great advancements. Hit some bumpy stuff but not massive brain surgery bumps. It seems that it is getting " different" for sure.

When we were in Arizona we were having a lot of testing done in speech. We hadn't had a firm diagnosis ( and we still don't) but there was no "reason" for it. Still isn't. Because this new speech lady approaches things VERY different. It doesn't fix the problem and we are seeing HUGE strides.

One of the things that people or the " doctor" people see as the problem is that he seems to get the first part of a word but can't really connect the LAST part of the word. For now we are THRILLED to get ANY part of the word but something doesn't connect.

Another funny thing is the sound that he makes for some of the letters. He can identify them GREAT. But he doesn't get that the F sound doesn't come out his nose but comes from placement of his mouth. He does the same thing for the V sound. It is done through his nose not his mouth. When we put his hand on our throat so he can feel it and so he can see up close the way our mouth is he can mimic the sound but it isn't "right"

One of the first "doctor" people we saw said that his lack of imagination or pretend play played a big role in him not talking . Well since moving we have seen more pretend play with promptings. For example, during a show if someone is eating food he has to have that food and then he spends 5 minutes getting his Barney to eat it. He jumps with Barney and does so many things by taking that doll with him. It isn't playing dolls or kitchen but it is something that he wasn't doing before.

His play is not so boring right now and he spends his day jumping, and playing on the piano. Going outside is another HUGE for him. He loves to eat the snow. Its a huge part of his day and I can't wait for him to get outside with warm weather.

Tell then we work work work and get those words coming.

He is my Brave Hero

I cannot tell you how amazingly brave and strong my sweet 4 year old is. I was listening to a song tonight that about sums up my feelings.

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Can You hear me?
Can You see him?
Please don't leave him
He's my son

The feelings I have had this week have been a HUGE roller coaster as they always are around the times we have any kind of procedure. I half laugh because jokingly said " it isn't brain surgery" and we have HAD brain surgery ( a lot) yet it still makes my insides and my anxiety kick into gear. The feelings of helplessness, defeat, and for me a lot of guilt get thrown in as I watch him go through ONE more thing and know that it isn't the end.

The morning went really smooth considering our early wake up. Ty was actually still asleep when we were ready to go. Which is GREAT and helped with the no eating issue.
The roads were pretty good as well until we got into downtown but we made it just in time to check in.

Ty was a pretty happy camper and we got him all set up to watch a movie and get ready for the paperwork to come. When we got there and they were ready to put a hospital bracelet on he FREAKED until we gave one to his Barney.
Shriner's has a bag of stuff ready for all the kids on their bed and the puppy was in it. He was in love. The kid currently has a zoo with all the stuff they have given him this last week. So he is all ready with Barney and his puppy watching a movie.


When we asked them to put a bracelet on Barney they even wrote his name. ( man I should be a child life specialist cause I had all the answers for my kid... OH WAIT... I am)
The vitals are pretty tough for Tyler as well. He cries when they do them. I have no idea why, but again I got the bright idea to have Barney's done and Ty complied when me and Ty did Tyler's where they needed the stethoscope. It was kinda nice to not have him cry. ( yet)
The docs were taking forever ( not uncommon in a specialist hospital or appointments) so me and Ty went on a wagon ride, all over the top floor of the fun hospital. Seriously. Shriner's is a pretty happy place.

As we headed back we started consents and talking to Dr. Gooch and the surgical team. And then came the waiting.

They gave Ty Versed. It has never worked before but man did it work this time. He was so freaking funny. I would sing him songs and he would laugh and laugh. He was "telling" his dad he was a penguin and patting his dad on the tummy. It was funny. This is the hardest part of the day knowing they are taking away my baby. It NEVER gets easier. But we laid him in the bed and off he went. NOT A PEEP.. and I didn't cry because I knew he was not missing me ( that I heard!)
We ran down and got some breakfast while Ty was gone and headed back to the room.
A tid bit about Shriner's. Most of it is run on donations and from the local Shrine. They don't take credit/debit cards there at the Cafeteria. ( I didn't know) and they handed me the receipt and said oh well. That is what we are for. Seriously. So when we went today I remember a check book and was able to "donate" back.

We got back to the room and Ty was on his way soon. It seemed everything went well. We didn't get to see Dr. Gooch but saw all the rest of the team and have all of our therapies lined up and appointments for the next 2 months to see how this goes.
Anesthesia is kind of a a beast for Tyler. For and hour and a half he screamed. And yes I look mean and fed up but we did that for an hour and a half. I was blocking it out... BLOCKING... and I have bruises.


When we finally got him settled we were able to take him home. But before we did I asked the Lady to please give Barney casts and so she did. Barney had casts and was ready to go with us. Tonight Tyler wouldn't play with Barney unless they were off but he was pretty content having the same things as Barney.
Tonight was sponge bath and meds time and he was pretty tired. The next few photos are not GREAT but shows what we are looking at for his feet.

So the verdict on the feet and why we are doing this.

1. The phenol shots that were put in his gastric and abductors are to help with the tight muscles cause by CP ( or brain damage) by taking away the tight muscles we are hoping to encourage the not strong muscles to take over and help make his muscles some what normal.
   
2. Casting, after the shots helps us stretch the muscles that have been tight for a long time in hopes that the shots will work and do their magic and a more "normal" gait will arise
3. Casting will hopefully help future orthopedic problems. Look at his toes in the last pictures. They do not sit straight. They curve. That is a GOOD curve to normally how they look and it is WAY WAY worse and isn't suppose to be there .
   

Tyler is current unable to walk, and crawling is hard. He basically can't get around. Mom is his way of transportation and dad is his way of getting loves. It would be so helpful if family and friends would come buy, knowing he might be mean and unfriendly but show the support. He will know you are there. And from the mom stand point it shows you care.
Because he is totally dependant on me at this point I know I could use a few adults to converse with so I don't lose my sanity. I normally wouldn't' ask but I am asking for the help from friends and family at this time. Please come and help us out. I promise the favor will be returned.

And the moral of my story:
I love Tyler. I feel I have given up every part of who I "was" and was "going to be" in order to be his mom. More so by going to the therapy, advocating really loudly sometimes and losing "friends" in the process. I needed my son to have the best possible outcome for his sake. I will continue to do that, even it it does step on toes.

I love him more than anything.
The words of my song as I beg my Father in Heaven
Can you hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

I will and would take his place in a heartbeat.

T you are MY bravest of Heroes

Long time no update

I posted on Wednesday but it feels like a million days ago. A lot has been going on the last 2 weeks and I haven't really updated.

I had a really really hard time with this surgery. Like I couldn't stop crying. Stupid I know but I don't think a day went by that I didn't call my mom bawling.I was frustrated, sad and so upset over his tone that I felt VERY alone and not sure where to even start to get him help or to figure out something.

On Monday I sent him back to school. He was still a bit gunky but nothing like he had been. Because he was clear of green stuff I thought it would be good for him ( and me) to get him back into a routine. His teacher agreed on the tone and said that when he would get excited and play really hard he could hardly keep his balance. He was encouraged to use his walker and they used the wagon a lot more than they ever have with him. It was very discouraging to me. I thought maybe I was playing the over reacting mom and was "seeing" things but nope.

Tuesday we went to PT and OT and music. He was having a rough day and wouldn't do anything for Jackie ( his OT) His PT was sick so when I went down the hall I heard him screaming so I went in to save the poor girl. Ty was not having ANY of the activities that he was directed to and was throwing major Tyler tantrums on the ground. It was not the best therapeutic session we have encountered. On a plus note Jackie said she didn't notice a increase in his hands just in his legs.

Like I said, I was a mess. I went home and bawled. Part of the day was spent frantically searching for someone who had any experience with increase tone and the other was calling his docs and specialist to figure out what and who was responsible to help us figure out the next step.

I got myself together and called his Rehab doc and left 3 messages ( and have yet to hear back from them.) I called his orthotic dude, Bret, and Brett decided we needed to be seen. He is AMAZING. We got an appointment with him on Thursday.

Before we got into Brett we were sent to do scans and a Shunt series ( the CT for his brain, the shunt series to make sure the tubing is draining in his stomach) the Shunt series was needed to figure out where the old tube was. I wish I had a picture of the scan that showed all of his tubing just hanging out in his tummy.

Right after our scans were done we headed into the Neurosurgeon for a follow up and was able to ask a lot of questions. The info that the neurosurgeon gave me was that his ventricles were so large and went so small in such a short amount of time his brain is in shock. The shock therefore causes him more tone. He rarely sees a kid that doesn't go back to baseline in a few weeks.

Till then we increase his stretching and encourage him to walk and do our best to get him off his toes. He is doing much better. It hurts my heart to see him regress. It was kinda tough on my. I cried.

Bret's appointment was on Thursday and we had a wonderful visit. We rescheduled till 11 due to Ty actually sleeping till almost 8. There was no way to make it to Downtown in less than an hour with a shower. The drive was uneventful and I even managed to make sure I didn't speed as to avoid Arizona's speed cameras.

Bret agreed that his tone had increased and that a few other spots were tight. We talked about his castings and his new braces and what is the best course of action. We have botox scheduled for April. It feels like it is all in slow motion in hopes of the botox working.

We are looking at finding something med wise that will chill Ty out enough to get a good casting. Bret is going to be calling our docs and seeing what we can find out. Along with meds and having Dad there we hope that we can get a good new casting.

We called Dallas as soon as we were done and asked if we could drop by. He had a meeting so me and Tyler decided to hit up the mills on the way home. We got to the mall and ate some lunch and shopped for several hours.

We had a great time and Ty even got to play with some puppies. He had a good time and he was such a good kid.

Friday was a bunch of errands and we had our neighbors over for a BBQ on Dallas new grill. While we were eating Ty decided to sit on my lap and "eat" with me. He had had lasagna before we all sat down. Since he "eats" my food with his hands first he was super messy. He always has to touch my food. ( I think it is his eyes but that is just me) Anyway, He took off with my corn on the cob and took it into the living room. I chased him down but took pictures before we got him to give back the corn on the cob

Ty eating dinner. He had his OWN corn at the time.

It ended up being a good week. I am glad we have some answers to his tone questions.

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!!

I have no Idea how to share this one...

I have been told that I am negative towards my child. I have been told I am hindering HIM and what he can be. Although I disagree with those statements I truly feel that I have had a realistic outlook on his life as a preemie and the long term issues that we would be facing.

When we found out we were pregnant I was still determined to start at the U and finish my degree fro Child development and get my certificate for child life specialist. I had the same instructor for 3 of my classes and I was really looking forward to my classes.

The first week of school came and I was doing better at not puking during classes (of course after class and in between was a different story) but I let my teachers know that I was pregnant and that I was actually going to be able to have the baby the day of my last final. That was what we thought.

Fast forward a few weeks.. We are getting ready for our first test and we had to cover prenatal stuff. We were learning about the age of viability. We were taught that according to our text book it was 25 weeks. That was the *magical* age. We were taught of the outcomes and the hardships.

Then came *that day*. I was 25 weeks. In fact I was 25 weeks and 3 days. I was VERY sick and I was paranoid but there was something wrong and I felt it. The rest of it is history. Ty came and we started on our journey.

Some issues we faced were:

PDA
IVH
Hydrocephalus
ROP
Craniosynostosis

After the PDA was fixed it was fine. We have had no other issues with his heart. We still don't see a cardiologist.

The Brain bleed was severe. It is severe. He has a grade 3 and 4 bleed. We had no idea what our outcomes would be because of it. We were told many things. But we were told that no one could predict what he could do. That is what we held onto. We jokingly talked about pimping out his wheelchair if it came to that. AND then the relief when he was determined to crawl and now he is determined to walk.

We though the hydrocephalus was resolved but after the reservoir was taken out we had our complications. He had a emergency shunt placed and then revised. Nothing since.

The ROP was severe and was treated with laser surgery. We were warned of the chance of CVI and yet some how we escaped that diagnosis. Even with the bleeds.

His craniosynostosis was a direct result from his prematurity in which we fixed and feel like we have dealt with that the best we know how.

What long term issues?

Ty has a limited vocabulary. BUT we are working on it with speech therapy. They say his receptive language is actually above average. Meaning he will do whatever we say.. Which is true. He follows directions so well and is VERY well behaved. PLUS he says and mimics some of the absolutely cutest things. Makes your heart melt.

He has a few sensory issues. All of which are a dramatic change from who is was last year. He won't scream when we vacuum and he eats just about whatever you put in front of him ( especially chocolate) he even tries just about every thing. He has even enjoyed a few shrimp scampi!! He is getting use to noise but that one.

We will always deal with the shunt on a as needed basis. So for us it is not big deal and we deal with it when we need to.

His eyes. Well they tell us he is legally blind. But then as we go back and do his therapies his eyes improve and we can see a huge difference in him. So we will just plug along doing what we need to do.

The biggest is his mobility. Although he took his time hitting his milestones he has some spastic muscles. Although he falls in the normal range and no one can decide on what to *call it* The neurologist feels it will just all fall into place and the PT we are currently seeing is helping us a lot.


So those are the long term issues. Not such a bad list right. RIGHT!!! WE are so happy with his progress and the things he is doing. So, after all the list... I took Ty to PT today. He is doing so well with this new place. He LOVES the swing there and we were working on his walking today with his AFO's. After we got them on the PT wanted to "try" the pediatric walker. She said that it usually takes kids a while to get use to them and to use them. We raised it up to the highest setting and set Tyler in. You will never guess what happened!!!! HE CRUISED CLEAR ACROSS THE ROOM. He did amazing. His left side of his body is a little less strong so we will be working on that but we have decided that for Ty and his mobility he is getting a walker. The PT doesn't think we will use it long, but if we do we do. I was so proud to see him walk. He has now exceeded EVERY expectation of the HORRIFIC Nurse practitioner that we had and he is continuing to do more than we could ask for. We are so proud of him.