Orthopedics and Oncology- All in one pretty package!

Mid February I called to get into one of our many specialist to get a script for AFO's or SMO's or something to get Ty braced. I was hoping to get it done before anything drastic happened. We visited with our Neurosurgery first in hopes that we could easily get the script and head off to Brett's and be done. But Dr. Shafron had other ideas.

D. Shafron felt that it was time to talk baclofen. And not just baclofen pills but baclofen pumps. He didn't feel that he could write the script for the orthotics but really wanted us to do the baclofen trial. He checked our weight and was excited to see that Ty qualified for the pump by about 4 pounds... YES 4 pounds. This thing looks like a hockey puck in their bellies. I have not wanted to even do the trial. We were even offered the trial in Utah and I just couldn't do it.

See- This is NOT going to fit in my kids belly. He is so, so little.  The other problem is adding another foreign body in his tummy makes me want to throw up a little. Adding his shunt into the mix is something I do not want to do. Adding a shunt and the pump, puts his shunt at a 90% failure rate. That is not something that I can do to him. I just can't do it. 

I tried to politely decline and he said I could call Marie, his nurse and set it up any time I wanted. Then I of course, did a shameless plug for the Hydrocephalus Association and our WALK and he said he he would get his office staff involved and he sent us on our way.

Since he wouldn't give us the braces I needed to get in with our Ortho doc. Low and behold we found out that our beloved Ortho was leaving. I was devastated. I might have cried just a little. 

Dr. Shrader has been the BEST orthopedic doctor ever. He is kind and patient and sometimes he just sits there after he talks to us and lets us cry and offers us a side hug. And he says "I understand" and he doesn't just say it he means it. You see. He has triplets. 2 of them have cerebral palsy. They have gone through summers of the same surgeries that he asking us to go through. He will walk you through everything that you ask of him.  But you see, these triplets, they grew up and are going to college. And he has done such a great job of raising them that they are moving back to Mississippi. And they are going to continue to grow and strive and him and his wife are going with them.

So we saw who he recommended. Dr. Emily. Dr. Emily is a very nice doctor. First time we met her, she was running late and we were tightly scheduled with oncology downstairs with a transfusion for Grayson. It was our last one and we just kinda wanted to get done. So she came in, and she said he needs surgery. Bracing won't work. Bracing would be stupid. I am not writing a script. I was SO mad and got SO defensive. She didn't want to tell me exactly what she wanted to do right then because she didn't have the results of his gait lab. So she scheduled another appointment and sent us downstairs to oncology.

Oncology just SUCKS. Grayson was there for his final FINAL appointment and we did do blood and a small infusion just to finally get him up to where he was finally on the scale. But we were there in he time of needing to wear masks and it was just a MESS.

Trying to keep masks on a kid with sensory processing disorder and a 3 year old is nuts. But they did a great job. We left after the infusion. Stuffed our faces with muffins and left. I always feel DEPLETED after a trip to the hospital.

We made another appointment for Orthopedics while we were there and we were allowed to pick up our BIG HUGE TOY and Grayson batted his eyes and got Tyler a BIG HUGE TOY too. ( Let me tell you, 4th floor gets NO toys. We don't even get freaking stickers up on the 4th floor, but the oncology floor, you get SETS of toys!!......) Grayson was released to go and get his blood tested monthly with his pediatrician and he was so relieved.

I do have to say, having this experience with Grayson has cause some major damage to his little brain. He is HORRIFIED of hospitals. He is OK going with us for Tyler. He is fine with watching things happen to Tyler but to take Grayson in for an appointment for himself is literally the most devastating thing that I have seen in a child. Tyler has had 100's of procedures done on his body but he doesn't have the same anxiety that Grayson does. When I was asking for advice from some moms in a sports group, I was flat out told that Grayson wasn't old enough to remember that I would be gone or that we would be at the hospital with his brother. That is by far one of the most false statements about Grayson.

Grayson has anxiety and starts to cry when he sees show about hospitals on TV. When Tyler was hospitalized back in November, Grayson came with me to check him in and the nurses were upset because Grayson was not old enough to be on the immune- compromised floor.  But he wouldn't leave my arms. His dad was on his way, but he was so anxious.

Novembers Overdose and hospitalization- 

 His dad said he didn't leave his side as they were leaving. When they got home he wouldn't even let his dad leave the room. This lasted for 2 days while we were in the hospital. While it might not damage some children, Grayson is VERY tenderhearted.  So for Grayson and this release from the oncology ward was HUGE. For Grayson for this upcoming surgery is DEVASTATING.

*For those that TRULY think that having a special needs child and having them have physical disabilities with major surgeries often ( and I don't even think we have had it OFTEN) It truly does impact the entire family, but it impacts the siblings of our special needs children. We often refer to our Special needs children as super heroes, but the overlooked heroes, are those who stand by as the sibling watching and being pushed aside.*  ( Sorry a HUGE, TALL, Soapbox!!*

The End Of Hydrocephalus Awareness Month

September is Hydrocephalus awareness month. I haven’t done much this year because it is not something that I like to think about. I hate worrying about Ty and his shunt and a malfunction and right now we are in a very VERY good place. I know that is not always going to be the case so for now we go on as though we have no worries in the world. BUT, I want to make sure that we don’t end the month with NO facts about hydrocephalus.

1 in every 1000 babies have hydrocephalus and is as common than Down syndrome and MORE common than Spina Bifida and Brain Tumors.

It is the MOST common reason for brain surgeries in children. 

There has been NO changes in treatment for over 50 years with no new treatment, or advancement  for a cure.

More research is needed to give better and more positive outcomes for those with this disease/condition.

There is no cure. 

There is no remission. 


Treatment is the same as it was 50 years ago. For every brain surgery your shunt has a 50 percent of failing within the FIRST YEAR of 50 percent.

If you were to buy a car and have it fail within the year the company would be out of business, but unfortunately, that is what these kids have to look forward to.

We will be participating in the hydrocpehalus walk in November here in Arizona and will be doing what we can do collect money for hydrocephalus.

We love our Brain baby. We wish him well with his shunt and are so happy to be in the place we are. We are still on edge when we start showing symptoms of malfunction, but we know we can do hard things.

We are proud of how well Tyler does when he is in shunt failure and how well he bounces back. We are proud of how well he handles the adversity that is put in front of him. He has so many things stacked against him and he always, ALWAYS, does his best.

A huge shout out of love to our favorite Neurosurgeon in the entire world. Dr. Walker. He has always been Ty’s biggest fan. And a HUGE shout out to Dr. Elton who decided to desert us here in the dessert and introduce us to Dr. Shafron who takes GREAT care of us and is a great help when needed.

Thank you, to those who support us financially when we do the walks and for those that support us when we go through brain surgeries. We are truly blessed to have Tyler be so great.

Education and research is needed to help those who are diagnosed with Hydrocephalus. And it takes a great person to be a brain surgeon!

A Lucky Ordinary Miracle

Tonight I am over emotional about the journey we have been on the last 5 years and the time in Holland we will have for the rest of our lives. I can't help but be thankful for so many things when it comes to Tyler and his sweet, gigantic, fighting stubborn little spirit.

A few weeks ago Dallas was doing an entry to his blog about Tyler an the story that was featured in the Salt Lake Tribune just over five years ago. We had no idea where that journey would really take us. Five years later, I still can't tell you where that journey will take us.

Five years ago we were rooming in and still not sure when we would be bringing Tyler home. We didn't know if we would be able to have him off his tube feeding and we didn't know if we were coming home by his due date.

Today, after a super awesome day and a great visit with the Neurosurgeon Tyler is doing amazing. He has beat the odds. Though he isn't without delays, those delays could be far worse. They could be far more devastating. Instead we get to watch him walk, talk and make us laugh.

Dr. Walker said that unless there is problems we are good for another year with next year being a no scan year. He of course Knocked on wood, but said that overall Tyler looks very stable. His condition, though chronic and life threatening, is doing well and doesn't seem to be making him sicker. He said generally kids who make it to age 5-6 with no seizures are usually past that concern and that Ty just looks good overall. He said he was Lucky!

LUCKY! Tyler Lucky!

Really, I think it is those who KNOW Tyler that are lucky. Not just because he is my kiddo but there truly is something about him that makes everyone he meets smile. Tense situation are lightened when he gives a kiss, says "Fank You" and most of all your heart melts when you know just how close we were to losing him so many times. ( Grandma's and mommies hearts melt when he tells you that he says "Tywer so sad and I sorwy momm-e)

Babies born as early as him generally have a lot more problems. Even some at later gestation's have issues worse than his. It really does make me thankful for him and for his Lucky deck of cards.

The last few weeks have been filled many Miracles after another. As ordinary as they seem, Miracles do Happen and we see them everyday! Oh and did I mention, Tyler's neurosurgeon is sponsoring him for a Make a wish Trip. I guess his dream of the beach JUST might come true!

We are lucky.....

In knots

I am the worst nervous mommy when it comes to sickness. I drive Dallas insane but I can't help but feel total panic.

On Saturday Ty did the early 3 am wake up. I couldn't shake the idea that he was not feeling well but he acted fine and asked for food around 5. I went downstairs and got him food and Dallas came down to take over and sent me back to bed. I was so thankful. I had a photo session in Salt Lake so I wanted to feel rested and I had to work at 6:30 pm so rest was really appreciated. I wasn't feeling well. Nauseous. I chalked it up to nerves but it felt like morning sickness. I am not pregnant so I KNOW it was something else.

I headed to the photo session ( now feeling bad cause I am almost sure it is a bug) ate some crackers and was feeling tired but OK. I got home, Nicky was watching Ty and he had fallen asleep. She said he was acting fine. Ate a ton of toaster struddles and fell fast asleep.

He was not interested in lunch but I offered to take him to the park. At the park a small little fall threw him into tears. So we came home where he laid on the floor crying and whining. I felt so bad for him. And then I noticed the fever.

My dad and mom stopped by and Dallas and my dad gave him a blessing. I noticed some gagging and knew that we were gonna have throw up. Through out the evening I started throwing up to but wasn't sure if it was from nerves or from a bug. Ty had a pretty rough night. He had a fever through out the night. Acted much better off and on through out the day. However tonight we are back sick. He took some motrin with LOTS of coaxing and holding and some night meds which we hope will make him and mom feel better. I am not far behind!

So why the nervous mom-

We have a shunt. One that tends to break. One that has broken every six months. Shunts and stomach bugs have the same symptoms. How do you know what is what?

As Dallas and I have been frantically googling trying to ease our mind and we find OUR own blogs but nothing else that will put our mind at ease. NOTHING. I call the on call at our peds and she doesn't think it warrants a trip to PCMC right now. He only threw up once today and it was not " impressive" vomiting. Like massive HUGE amounts that are violent VIOLENT. So we wait.

The fact that I still worry about losing my child 4 years after the initial events of his rough start makes me mad. I hate how I still have thoughts of watching him get sicker and sicker. Feeling helpless as I watch him die. He is alive yet I still think of those times.

When he is sick both of us have anxiety. Both of us watch him closely. I hate how it all plays out. Every cry and whimper at night has me on edge, every time I can't hear him breathe I freak out. I have to know he is OK.

I can't bear to think of the alternative. No matter what I feel regarding any given situation he has changed my world. As sucky as the weeks are or the therapy after therapy he is mine. And thinking a shunt breaking puts him at risk makes me so sick.

I am in Knots and along with me not feeling well either, knots are not fun!

I know he will be fine whatever we need to do. But I still can't help but worry.

YOUR Team- In the NICU and beyond!

For many preemies a stay in the NICU is inevitable. The NICU is such a different place. I recommend to any pregnant women to sign up and take a tour of the NICU. If you find yourself there it is a VERY scary and overwhelming.

I had never been in a NICU. I don't know how I survived it. The only thing that kept me going was knowing on the other side of those locked doors was a little guy that I wanted to touch and love and hold.

The NICU is such an emotional roller coaster. Some days are UP UP and others are DOWN DOWN. Sometimes it wasn't even days. Sometimes it was hour and even minutes that the emotions change.

The NICU is different for everyone. Depending on the complications that your baby experiences and how long you are there is a big indicator of the roller coaster you experience. For us our roller coaster hasn't stopped but we were able to move onto a different ride when we left the NICU.

You have a HUGE team of doctors that you have to really feel that you can trust. When we first got to the NICU I didn't know if I could trust the set of docs we had. We quickly found ourselves some nurses that were our Primary nurses. Barb, Gerald and Brandon were our "team" of nurses. We chose them to be our primary nurses. They were SOOO good with Tyler. Tyler did so well with the boys. Brandon would read baseball magazines to him. I trusted my child with these people. I knew Barb would tell me if things were not looking good and Gerald became the Charge nurse and he really pushed for us to be able to hold Tyler.

As Tyler got sicker and the need for him to be moved AGAIN Gerald really got the ball going and he prepared us to get our kid to the next level. He also made it possible 3 weeks after Ty was born to hold him. BOTH of us. It was amazing and sad experience. In my mind, bonding with my child was suppose to happen instantly. Instead that skin to skin contact was with held.

When we moved to PCMC I was sick. I was so sick because we had a new team of doctors. We were put on team A or team B and the would pick where he is according to how sick he was. We knew we needed brain surgery so we knew it would be a long haul and we would need to trust our team.

This is when we met Marissa. Marissa is still Tyler's doctor. There is NOTHING that I can say that will give this doctor the praise she deserves. I became even closer with Marissa the first time she called at 4 am to tell me that something was really wrong.

After that morning call I relied ( and still do) rely on this doctor. She has NEVER been dishonest with me. She has always told me the truth. She has ALWAYS listened to me and has never pushed me away.

Her phone call to me was to let me know that after Ty had his brain surgery he had a seizure. It was a bad one. She said it was a few minutes long and she had to give him the max meds for him to be under control. She stayed on the phone with me while I sobbed and sobbed. I got up and pumped and headed up to the NICU as soon as I could. Marissa was called while we were there and she talked with us over our extremely snowed baby.

She was my solid solid arm in the NICU and after the NICU. Between her and Dr. Duffy and Nurse Jen I survived my motherhood so far.

Our team of docs while in the NICU were all VERY smart and very busy. But they made OUR team. Tyler still has many of these doctors today.

In the NICU you also have to find people you trust to be your nurses. One day while we were just getting the swing of how PCMC is working etc we met a nurse. A nurse that I really liked. And that I thought I knew from some where. Sure enough, we were neighbors in college. We asked her to be our primary nurse, we had Chris at night and Jennica and then who ever. We were there enough we knew pretty much everyone.

Our team of docs were there to work as a team and the end result was to get the best Tyler that we could, send him home and love him and his team at home would continue to love and help him grow.

Our Main team of docs now are the team that I trust. Its the team of Doctors that have transitioned us from the NICU to now

Dr. Walker- the very BEST neurosurgeon in the valley ( in my opinion) This man has listened to my mommy gut more than once and has gone above and beyond and has cut a vacation short to talk to a mom whith a hunch. He called when that shunt he put in was recalled. This man is my hero!

Dr. Nagle- Marrissa is seriously my HERO. I can call her and she can hear the panic in my voice and she can defuse the momminess in me and get me to listen LOGICALLY. Marissa is one of the only people who have gotten me through four years of preemiehood. Even though I moved I called Marissa a few times. She is willing to try ANYTHING for Tyler. She is the best thing that I could give to my son. A doctor who loves him and adores him.

Dr. Larsen- Originally this doc was Dr. Dries. But I really needed a doc that would work with my child not tell me he was blind. He isn't blind. Dr. Larsen did that. He was listening. He got us started on the path we are on now.

Dr. Gooch- She is Tyler's rehab doc and she is working at getting us a little more mobile and getting us back to where we need to be. We are very thankful for her.

Dr. Carrol- She is working with Dr. Gooch to help with the orthopedic problems that Tyler is having. She is doing all she can to avoid surgery and fix him up the best we can.

We will be seeing a neurologist here and also a sleep doctor. That makes up Tyler's whole team of docs. We have therapists that are included in our plan of action. But the most important part of the whole team is Tyler

All of these docs have one thing in common from the NICU to now. TYLER.

As a new mom embarking on this journey, take recommendations from your friends but know that in the end YOU chose what is best for your baby.

Find the best team that works for you!

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.

Home Again!

I am amazed at how quickly Ty bounces back after one of these things. I do have to say this one is a little more involved in his tummy so he is not walking to hot. He walks like an old man really.

OK so here is the run down at the hospital.

Ty got sick, puked a bunch of times. We got to the hospital and got right back because of the fact we "thought" it might be his shunt. We immediately got back to get some CT scans ( immediately means 2 hours) and the doc in the ER thought is was probably just his lungs.

The scans came back with an enlarged ventricle. They sent us for an xray of his tummy which showed his tubing. The tubing had broken at some point and the bottom of the tubing, at some point, had stopped allowing it to drain.

As soon as the radiologist saw the broken tube our neurosurgeon was called and he came in. I headed home to grab the things I would need to sleep over and Dallas did the waiting. I got there after they had taken him in to surgery.

We talked with Dr. Elton after the surgery and waited to go back to recovery where we were met with a very very mad little dude. I didn't hold him in recovery just because of the extensive stuff done on his tummy.

So the medical part. The tubing had fallen to his tummy and they were not able to get it out without risk so they left it in. They shouldn't pose to much of a risk ( but this is Tyler) and we will get an ex ray of them in 2 weeks to check out where it all is. Because they were poking in his tummy it is VERY VERY sore.

He slept pretty good and was doing really well last night. After being up and down for a few hours this morning I finally asked them for some morphine. They gave it to him and he slept soundly for a few hours. Mom was awoke by all types of people needing to verify who they were touching ( even if I had been there all night and it was their 3rd time in )

He is up and moving ( slowly) tonight and we are so proud of him. He is eating, holding it down, dancing, jabbering and almost back to Tyler. He wants to walk but he is pretty sore so we hope it heals fast.

So the new and fixed (again) Tyler .

This is his head scar. He has it in the same place as his Craniosynostosis scar.

Showing his happy face and his leads. He has a hard time letting them take any tape off at the hospital. He screams. Instead we just bring him home and shower him and take them off Pain free.

Sporting the new dew. He just had it cut all cute and short. Now it is gone. There is not a bit of it left.

His new tummy scar. It isn't as bad as some of his others. It is not in the same place as his old one because there was already some scar tissue and it would have wrecked havoc on his bowels. (Thank goodness for small miracles when it comes to his neurosurgeon)

Him happy in his chair at home with mom and dad.I can't wait to get my house back in order and cleaned.

Ty sporting his Thomas balloon that we went and got at the gift shop. He deserved so much more than a balloon but he loves it.

In the end I am so grateful we went in. That we listened to that voice and anxiety that was there. I wish a million times over I was just over reacting. He is a miracle and we love him and we will keep hoping for more miracles.

Thank you to those who offered support by calling and texting. You are amazing.

Interesting Tidbit!

I have really enjoyed discovery health the past little bit. They have a few new TV series' that I have really liked.

Anyone, I was sitting on the floor finishing up fathers day gifts.. ( to bad for the dads it will be late) and a Neurosurgeon came on. Low and behold..... IT WAS TY'S!!

It was nice and comforting to know that they would show him and that it he is a pretty dang good Doctor.

Just thought I would share!!