At 3:30 this morning, Alex came in and woke me up. He was upset and fussy. He didn't want to cuddle and go back to sleep. Weird. OK, let's try a shower. Alex loves showers. He'd be in the water all day if I'd let him. No, he didn't want a shower. That was my first red flag. So we got re-dressed and then he started vomiting. Second flag, and that's it. We got dressed and woke Sammi and Jessi to let them know what was going on.
ER had us in CT and x-ray almost immediately. Doctor was saying even if the CT is clean, you are going downtown, she didn't like how he was presenting.
We got through the CT and x-rays. Three adults to make sure we got the pictures we needed. I thought something must be up because we kept taking more and more pictures.
We got back to our room and the cute doctor said I don't even need a radiologist to read that CT. His shunt is malfunctioning. They called down and talked with neurosurgery and ordered the ambulance to get us down there.
The paramedics got us to Norton Children's in record time and delivered us to pre-op. Everyone showed up, I answered lots of questions, signed forms, and they took my sweet boy away.
The neurosurgeon said the tubing had come off of the actual device in his head, so the fluid had no where to go. Its unusual for that to happen at this age, but it can happen.
So we are here in the hospital all repaired with two new scars on his little body. He's being a champ! Just have to recover some, get some IV antibiotics onboard, and have some repeat tests tomorrow to make sure those ventricules are going down. So grateful!!
So grateful that everything worked so smoothly today. My baby had a need and they provided the fix. So grateful he has access to this wonderful medical care that keeps him alive!!!!
Yesterday I was so giddy! So happy! PA had come for our new son. I have wanted to adopt from China for so long I can’t remember when that dream started. But I always figured we never could. We weren’t rich enough. We weren’t skinny enough. We didn’t….. you get the idea. My mind always came up with reasons. But now I am and I am THRILLED! So Thrilled! I am loving every step of this process! I am so excited!!! I can’t wait to be there, to experience it ALL! Thrilling!
Look at these!!! The first is a letter I wrote to the CCWA – it’s in Chinese!!! Those last few characters on the right at the bottom are MY NAME – in Chinese!! And the second is my pre-approval from the CCWA! So thrilling!!!!! If I could do cartwheels, I would!!
And then today we had a follow up with neurology and I have been crying ever since.
And I’m not a crier.
I live on a see-saw this week!
Today I got to tell the neurologist about Alex’s motor tics that have been going on for a month and a half. His pediatrician diagnosed them as motor tics and that we could wait till our regularly scheduled appointment with neurology. So I brought in this video (as a side note, neurologist LOVE cell phones and that we can capture tics and seizures and actually SHOW them to the doctor – it’s great!)
(ignore the sound, as always I was multi-tasking at the time)
He agreed that it was probably a motor tic, but with Alex and his complicated brain, he did NOT want to assume. He wanted a 24 hour video EEG. Yes, I know exactly what those are from Cyndi’s Michael (my nephew). But my dear doctor, we can’t even do an EEG because we have this little thing called autism and extreme sensory issues with having leads stuck to our head. So that was out. Instead I am to monitor and see if there is any correlation between anxiety and the tics or sensory input and the tics. Fun times for me ahead!!
That was pretty much the visit and we would have been fine, maybe even made it to OT if I haven’t thought to ask one more question.
When Alex was a baby, no one sat me down and said, “Mrs. Turpin, your child will never….” In a way that is good. I was given instructions about his shunt and was sent to the airport with this sweet boy. We went home and loved our new baby with abandon! And dreamed many wonderful dreams for his future. The death of dreams is extremely painful. There are no nerve endings involved, but oh, the pain and agony of a destroyed dream for your child.
Let me be totally clear – I adore my son. I love him just the way he is. But I dream for my children. I push, tenderly, but persistently, and what amazing outcomes I have seen. Look at my Bella. Seriously, people look at me like I’m lying if I chance to tell them where she was a few short years ago. But I guess while hearts can be surgically repaired, and lungs grow new tissue, brains do not heal the way I would want them to.
Today I asked for the “your son will never” talk. I need to know. I am being asked to decide what school placement would be appropriate for my son for next year. A committee looks at him, scrutinizes him, and then we come up with appropriate goals for the next year, but for some crazy reasons, I have been left with the placement decision. So I ask the neurologist. And I got the truth. Gently and kindly spoken, even tenderly, he told me the truth. He said, Alex is intellectually disabled, although he is not old enough to receive that diagnosis, he is still intellectually disabled. He should be given the best medical care available and therapy to the fullest extent possible. My son will need a guardian as an adult, he will not be able to make the important decisions for himself. He will need assisted living. He will work one day, in a sheltered and none demanding job. MRI and CT results were translated into English today. The three worse phrases heard: missing brain, brain damage, global. It really is surprising he doesn’t have cerebral palsy.
So very, very different from my dreams for him.
Seriously, Shelly, what were you expecting?
Well, his therapists and I have been seeing so much progress of late in his communication. I expected him to talk one day. With his increased ability to communicate, I expected his self injurious behaviors to disappear, after all they seem to be a direct result of his inability to communicate his needs and wants. Give him communication and all the world’s problems are solved. He understands what we say to him – you can tell because he reacts to our words. I expected language to open up his whole world. I was holding out for things to start clicking, for him to be able to one day serve a mission for our church, and even marry.
My dreams and the doctor’s vision of his future are polar opposites.
But, I am not giving up. Alex will have the best of everything! He will be the best Alex he can be! I will make sure everything is in place to help him be that best Alex. He is my son and that is what I do.
(as an aside: Shelly, haven’t you had this experience before where you had to readjust your expectations? Yes, and I think I will have to do this again and again. I love my son. I want the best for him.)
We headed to the temple after our appointment. I figured sitting on the temple grounds was probably a lot healthier for me than drowning my shattered dreams in chocolate. We talked about the temple and how kind Heavenly Father is to give us temple so families can be together forever and so we can go home to Him one day. I told Alex about Jesus and how much He loves him! I told him about the many little children that Jesus healed who had epilepsy. (And yes, I would have been that Mom that tracked Jesus down to heal my boy. You’d better believe it!)
I do know that Alex is awesome. He is a fantastic kid. He is sweet and loving (I am lucky – super blessed there with the Autism diagnosis for him to be cuddly and sweet.) He learns and progresses – at his own pace. No matter how far – or not – my boy goes, he will be happy. That is a promise that will never die or be destroyed!
The culprit? The flu – as in go to the doctor, they stick a q-tip up your nose, they come back into the room and say, Guess what? And here is a school note for a week for you, and you, and you, and you, and you, and you.
Yes, we all had it. As in all 8 of us.
Yuck!
Here are some pictures of Bella. She’s cute. The rest of us are not so much…
Thought I’d do an update on everyone. Bella is still super dramatic (where is the theater?), super cute, and super amazing!
She adores her niece Ellie. We come up with all kinds of different ways to do her hair each morning, and usually by the end of the day, she has all of the bows and rubber bands out, leaving her long, thin hair in her face.
She adores her sister Joy, unless she is annoyed with her sister Joy, then her claws come out. Sound like sisters to anyone?
She amazes me!
She loves her ballet / jazz class!! She also loves her cupcake from Gigi’s afterwards!
She’s a ham!
She is doing well at school. She has the best teacher who pushes and pushes her. I am so pleased!! (Don’t you just love her glasses?)
Therapy is going great – if I stop to think where we were, I get overwhelmed.
We are working on our fears of going to doctors and dentists. We are watching our siblings go (and survive! – not to mock her fears). Slowly, slowly, she is getting there.
She loves to be outside!
All dressed up for church – where she is rotten because she can be!
She LOVES to mimic her big sister!
She got the flu – and, I love this part, she only needed breathing treatments – not oxygen – not a hospital. Totally awesome!
She thinks she is totally big and wants to be involved in all big people conversations!
