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 fun pictures of life in our house!

Our Valentine Dinner:




This little one is the best when he is sleeping:



Grayson has the best time in our little neighborhood. He needs a fishing pole Grandpa!


We borrowed a baby one day to see if we could convince Grayson that HE  was not a baby. Other than he LOVED the baby that he feed him, put him to sleep and would stand there cooing how cute he was, it backfired.



For some reason I don't even care he is eating out the centers of the oreo's and turning them into pasties... Ok they are really smiley faces but it never got that far...



We can't forget the time we made 4 trips to the pediatricians and each tie a bruise bigger than Texas would show up on someone.....





And we still like Sand.. A lot of it



This sweet thing climbed up on my lap and laid there while I didn't feel well and we watched sponge bob together.... LOVE him so much

Lamictal is my life.....

Trying to gain control of the seizures that plaque my child's body has caused lamictal and neurologist and the idea of a neurosurgeon and any thing else with our brain, has caused me to be exhausted. The lamictal rash was a accidentally overdose and Dr. C feels so terrible. But we waited  2 weeks and started at the bottom rung of lamictal again.  We are starting on week 2 where he gets 5mg every day in the morning. Then we watch. Any time a welt raises or he gets a rash, we go get checked out and we stay a day.

Fast forward to a week after Tyler's stays, Grayson and I checked into the Sleep lab at Banner Desert. They made it sound like a 5 star resort and it was a moldy smelling building with cots for the mom and "breakfast" at like 4 am.

I was prepared for my child to freak out and cry. I explained that it was not like Dr. Henry Hugglemonster ( the oncologist we see frequently) and he sat so still while I read him books and they taped stuff on his face and body. He has to be touching me while he falls asleep so I felt like it took forever for him to be asleep.

Turns out, he slept great. At least on the outside. I don't know what it is saying on the report. But he doesn't like to sleep alone. But this particular night, he did great and slept really well. He only woke up twice.

Between 2 sleep overs at the hospital, I am not on my game this month. I am redoing my final 3 classes at ASU and doing some interning for marriage and family therapy groups. And then apply for graduating. We should be done in not so long of a time.

Iron {or not} Man!

Oh man! Do we have a pale Ghost in this neck of the wood. Grayson is still a little.... NOPE a LOT low on his Iron. After our Utah trip ( coming up in a few blog posts) Grayson was terrible. The trip home was exhausting and in Utah he had a hard time staying up with the "Jones." ( OK Martins and Gales and Shaw's.... AKA our most favorite Utah people) When he is tired he become 3, and destroys EVERYTHING in his path.

So after our said "Vacation," I called and asked them what in the world was I suppose to do when our entire day is spent being mad at a 3 year old all because he is so stinking sleepy and tired.

The appointment was easy peasy and not much to report that wasn't sent to the Gma's and Aunts that asked, but the best part, Grayson is doing so much better and letting them poke him. His Iron is still low, he will be ready for a transfusion on his next appointment in January and if we go to Utah, to be prepared for some MASSIVE mood swings when he comes back home. Because he needs more oxygen in Utah, his body has to work harder. So when he gets back, he is just trying to adjust and it makes him a ticked off 3 year old.

In the mean time.... Here is my sweet toot, being a " Brave Dragon!"

He looks sad, but he was really just fine. The blood pressure cuff had to be repeated about 4 times. 

So totally off topic of anemia and thalassemia, but we are in the oncology department when we go to these appointments. ( Thalassemia is a blood disorder)  So the cancer place. I had recently developed a cold sore ( on said vacation!) and they made me wear a mask. I was happy to do so. The waiting room was packed with adults in masks, but not many kids. I looked over and a dad had written in tiny letters on his mask " EBOLA!"  I took a terrible picture but EVERYONE was dying of laughter.

Thalassemia

Thalassemia is an inherited blood disorder. It causes abnormal hemoglobin that doesn't have the protein to carry oxygen in the blood where it is suppose to go causing anemia. The disorder can be mild to severe.

That is the diagnosis.

Graysons red blood cells are more oval than they should be. And his red blood cell count, though currently normal, he is on the low end of normal. The test they did on his liver shows that the iron stores that should be in his liver are either super low or non existent.

We add Gummies with iron from Costco since liquid iron makes his skin break out something fierce and barf and more barf.

In a month we redraw labs. If our iron levels haven't moved, we go to the next step.

Long term we don't foresee major issues. With blood work, and a hematologist on board he should be fine. We might see a few blood transfusions in our day but we will be OK.