Neuro Check Up 7 Years Later

No, that title isn't a typo. I really did wait 7 years between neuro appointments. The last time we went it was a joke (Dr said stem cells aren't helpful,  it was a shame Liam is blind, said if he had ataxia CP it was the worst he's ever seen, blah blah- I mean he was older than America so I just uh huhed him at every turn) and other than giving us a new med to try it wasn't a helpful or productive appointment. After finding out the medicine had some pretty serious side effects I never even put Liam on it.

Fast forward to this summer. Liam's weird jaw issue has not abated in the least. Some days he's great and other days it's a non stop battle of forcing his jaw shut against him cocking it open and gasping for air. So, we decided to see a new neuro and prayed there was something that could help Liam because baclofen isn't cutting it. Maybe he needs a higher dose? I dunno but that's a different Dr, so off to Chapel Hill we went.

Three hours of driving, with two of them spent listening to Liam cry, we arrived. I hate that drive. Anyway, got called back pretty quickly and to my utter horror, the exact same neuro walked in the door from 7 years ago. Now he's older than dirt. My jaw dropped open the moment I saw him and I turned to my mom so he wouldn't see me gaping at my horrible luck.

He grinned and said hi and asked me how the medicine worked all those years ago. I told him I wouldn't know because we never used it and honestly, if we had, I've had too many sleepless nights since then to remember if this particular one worked well or not. He did spend a lot of time learning about Liam and how he is doing in school and with his eye gaze and spent a lot of time playing with Liam's sweaty hands. He asked if we knew what kind of cerebral palsy Liam has and I told him he told me years go that he felt Liam has choreoathetoid CP. Or it could be a really bad worst case scenario ataxia. He was playing with Liam's hands at the time and said his lovely loose hands and free movements of them showed to him that Liam has choreoathetoid. I asked him how many kids he's seen like that and he said 4-5. It's not very common and it's stupid hard to treat. Stupid hard.

He mentioned the medicine again, levodopa, which is a Parkinson's med, and felt it was worth a try. He said Liam has damage to his basal ganglia (that has never been shown in his MRI) and that that has caused Liam's rare form of CP. He said some kids with different disorders that affect the basal ganglia learn to walk after going on this med (that will never happen for Liam) and it could really help with his extra movements. He also mentioned a patch to help for the days Liam likes to push all his saliva out of his mouth instead of swallowing it. Love those days.

I decided to give them a try and he went out to get the rx. Ten minutes later he still wasn't back. I go out in the hall to find him and one of the nurses asked me what I need. I tell her I'm looking for the Dr and another nurse said she heard him in his office dictating notes. I cried WHAT a little loudly and the ladies started laughing. I told them I hadn't been back in 7 years because I was hoping that Dr had retired. They laughed even harder and said they have heard that before and others were wishing for the same thing. One of them went to track him down and another 5 minutes later he came back with the rx. As he walked in the door he told my mom she had come with me the last time (good memory) and then asks me if I want a business card. I said sure and then he hands one to my mom saying she could have one too since she came with me, like he was handing out lollipops for good patients. He left and we walked out the door laughing.

I couldn't be angry. Frustrated yes, but not angry. I should have checked to see if it was the same Dr seeing Liam, so that is all on me. I had assumed he's retired. I'm not kidding he's OLD. I was hoping for young fresh eyes on Liam but maybe that will happen next time. I did feel the appointment was useful as we had two new meds to try. He said we would know right away if the levodopa would help and I'll leave that for another post. ;)

Not that you do.

Just in case any one erred in judgment and thought we have it all together, I would like to take a moment and say that pretty IG photos and FB posts do not a clear picture make.

While yes, my life could be worse (you can say that to anyone - of course life can always get worse), we are absolutely and always grateful for what we live each day, but sometimes days with a multiply challenged child are tough and reality bites hard.

Cue the vomit.

And Liam's new horrible habit of locking his jaw and closing his airway. Gagging. Gasping for breath. Then doing it again 597 times before the day is done.

Now picture him doing that in the middle of the night.

Cue the picture of the sweet little family all with children your own kids ages...if they had lived. Cue the happy-go-lucky faces of said children who can pose and smile on cue, reminding you that your kid can't.

Some days, life is asking you to take a punch in the gut - again. That doesn't mean I hate it. On the contrary, I love my life and the priviledge it is to be the mom. But the daily grind of a challenged kiddo can be taxing and on those days I think I am grateful for the moments where I look like I have it all together. ;) I can pretend, right?

Getting back to normal.

I've been wanting to give an update to our stem cell trip but some parts of the trip have really angered me and I needed a break before posting lest I look like I'm a ranting lunatic. But I probably will anyway so here goes...

Atlanta on the way down.

Can't you just see him asking if we're there yet.

The flights down there went pretty great. On our first Delta flight into the Dominican, a gentleman from business class immediately got out of his seat when he saw me get on the plane carrying Liam in that seat and he grabbed one side and helped me carry him all the way to the back of the plane. Not that I was going to refuse, but there was no way he was going to let me carry him alone. :)

On our return flight home I texted Shawn and told him I was never.ever flying with Liam again. It was the heat of the moment and I was done. Liam was over done. And I never want to do it again. Liam was a trooper. He really was. But sitting confined in a seat all day long when your body wants to move is painful.

On our first flight coming home from out of the Dominican he did pretty good. I got him situated well but he still isn't 'properly' seated so it can be a problem with his head control.

And that makes him cough.

So that's what he did.

The entire flight.

And the gentle(cough cough)man in the seat in front of Rylie rubber necked the ENTIRE flight to look at Liam. He even put his sunglasses on so he could stare with out looking so obvious. Like that wasn't obvious! I put Liam's iPad right in front of his face so the lookey loo couldn't see him.  Now, I understand, Liam is coughing. A LOT. But COME ON! Where did manners go? You look once or twice, can see the child has issues, then turn your face back around and keep to your own seat. Or, if you have a heart, ask if there's anything you can do. But don't ogle my son as if he has the freaking plague. He's obviously healthy, not crying, and I am attending to his needs. Leave us alone and get your staring fix by watching a movie. Rylie got a chance to stare him down when we switched seats and when he realized what she was doing he never looked back again. asdfghjkl...

After landing, a REAL gentleman in front of my seat, who never once turned around to look and stare, asked us if he could get our bags for us. That's what an empathetic, considerate person should do. I was so proud of him for being so kind. I wanted to tell him that but thought it would be too weird.

Trying to wake from the propofol after the extraction. This time they extracted stem cells from both hips.

When we got to Atlanta we had a three hour layover. I was happy about that because it allowed us time to get Liam out, eat, and just relax before another plane ride. Well, Liam was at his over done point. He was crying and crying and while Rylie and I tried to eat he wouldn't calm down. I had to get up and walk with him and let Rylie finish and then we'd switch off. Each time I walked him back to the tables where we were eating he would freak out and cry even harder. We switched off and I finished my now ice cold dinner and kept an eye on Rylie as she walked with Liam. Whenever she'd get close to my table he would cry again. I grabbed Liam and took off for the bathroom so he could lay out on the counter and relax and when I picked him up I lifted his shirt and saw a dark black and blue depression on his spine. His stroller straps had gotten twisted and had knotted right on the middle of his back and even though there was a thin cushion over it it was still digging into his spine.

After the cath, he wasn't complaining & for that I was shocked & happy.

I felt horrible. My poor wee man had been trying to tell me he hurt and I thought he was just bothered by all the traveling. Mom fail.

With the bruising on his thighs from the procedure and now the bruising on his back, he was not a happy guy. He cried for the rest of the layover. I felt so bad for the people in our tiny little terminal. They were probably only 20 seats and there was no escaping Liam's irritability.  None of them stared at us though. ;)

Once we were home Liam ran a low grade fever off and on for days. It would only last a couple of hours at the most.  He wasn't miserable, but he wasn't his happy self either and with not being able to give any medicines due to the stem cells, we relied heavily on homeopathic treatments to treat his discomfort. We did onions on the feet, egg whites on the feet, essential oils on the chest and feet, colloidal silver, and extra vitamins. It was the first time I've ever had one of my kids go medicine free for pain from a fever and Liam ended up doing really well.

He had to miss several days of school out of pure exhaustion and crankiness though and it took a full week following the procedure before he was back to his old self.

People ask when we will see improvements. It's a valid question. When will we see improvements? I want to see them now too. I'm praying we will see them now. But we might not see improvements for a while. It could be up to a year. And that's a long time to wait looking for signs of answered prayers and hopes and dreams.

This is the moment, after 20 min of a flipping, curving catheter, the Dr finally got it through and up into his carotid. You can't hear them in the room but they all shouted and whooped and were giving thumbs up in relief for finally getting it.

The gorgeous sunset view from our room. Ocean on the left & mountains on the right.

Didn't see that coming.

Holy diagnosis, Batman!  I got an email to log into our Blue Cross Blue Shield account because new information had been added for Liam. I've never gotten a notice like that so I logged in to check it out. I found a page that I didn't even know existed. It's a list of everything that Liam has ever been diagnosed with. It's creepy scary. 

A personal health record, with line after line of issues.  Some of them aren't even true and when I click on them I am able to say he either no longer has the issue or delete it entirely. Like 'cerebral brain deterioration'. What the... I don't even know how that's there. His brain isn't deteriorating, nor has it since the day we brought him home. That's NEVER been a diagnosis that I was aware of.

Delete.

Tooth loss? He's not even lost his first tooth yet.

Delete.

TB-related miliary fever?  Nope.

Delete.

Complication of medical care?

How is that a diagnosis??

Delete.

 It's also interesting to look at who listed each diagnosis in his chart. Some are the medical supply company, the medical equipment company, some the therapists, some his doctors, and some are even from the pharmacy.  The pharmacy? I don't even know how they can list a diagnosis.

What's funny is that years ago, if I would have seen this list, I would have freaked out. I would have been sad, looking at a bunch of terms that the world has to use to define my son. It's a lot of medical terminology and scary sounding words (muscle wasting, anyone?). But I look at this list now and I don't see each individual diagnosis. I see an amalgam of terms that can't even begin to remotely describe my boy. He is not defined by his diagnosis, we certainly don't define him that way. He is unique, wonderfully created, and so much more than a sheet of terms could ever describe.

Guilt Trip

I thought that being almost 6 years out from Liam's birth the mommy guilt wouldn't be a problem anymore. But, dang if it doesn't just creep in when you least expect it.

I belong to a group on facebook of moms of micropreemies. I had completely forgotten I was a part of this group until recently when facebook changed how posts come across. Now, every person who posts to this micropreemie group gets a front row seat in my feed. I usually ignore them because they are almost 99% of the time stories of  "look at how good my 1 pounder is doing now" types of things and although I am very, very happy these kids are doing so well, it hurts my heart that Liam faces what he does. 

Tonight though, a post came through about how this woman's water had broken at 18 weeks and she was pressured to abort. She fought the Dr's, hung in, and her child is doing fantastic.

Why would that give me guilt?

When I lost my mucous plug at 23 weeks and 6 days, I begged the Dr to put me in the Trendelenburg position to keep Liam and Brady in. The steroids take 24 hours to take affect and I'd only had them for a few hours. I knew they needed more time, but everything I knew was being thrown out the window by this nice, soft spoken Dr who said they needed to be delivered in a safe, prepared environment instead of birthing them spontaneously. He explained that if Liam broke the bag of waters it would be dangerous and they could better survive if they were taken by c-section.

I have mommy guilt because I feel I should have told the Dr no. Now, I know that this is a silly feeling to have because I don't know how things would have gone if I'd said no. But I do know that I might not be feeling guilty today if I had fought back then to give them more time in the womb. And it doesn't help to know other mothers in a very similar situation to mine were given more time and put in Trendelenburg. Liam's life might be more typical, his challenges might be minimal, Brady might be here... The what if's are terrible to go back and think about because I can't change anything that has happened.

That's why I usually don't read them. I can't stand the guilt.

Stem Cells in VLBW/Very Low Birth Weight Babies

      In a new study presented at the Society for Maternal-Fetal Medicine's annual meeting, The Pregnancy Meeting ™, in Dallas, Texas, researchers have reported that early transplantation of human placenta-derived mesenchymal stem cells into the lateral ventricles of neonatal rats with birth-related brain damage is possible, and that the donor cells can survive and migrate in the recipient's brain. The study was designed to have the rat's brain damage mimic brain injury in infants with very low birth weight.

 Here is the article in full.

This is encouraging news! My only concern is where the placental mesenchymal cells are coming from. It doesn't say and if it is from aborted babies then I would not want to be a part of that. But if it is from donated placenta than this would be very exciting news and give hope to the moms who experience what we do that maybe the severe brain injuries in micropreemies will be a thing of the past some day.

Yes- I'm going there...

This is sanctity of life week and as we enter into the anniversary month of 35 years of Roe v. Wade I thought it more than appropriate to finally post my Horton Hears A Who post. And I know you are asking what those two things have in common, eh? Quite a lot, actually!

I found myself watching the movie with my kids recently and enjoying how much it followed the book. And it struck me how very important the message in that movie was. How many times have I read this book?? Why didn't I grasp it before? I realized how profound Horton is. Horton tries to get across to his neighbors that "A person's a person no matter how small!" but they don't believe there are even any persons on his speck of dust. Yet Horton risks his life and his reputation to make sure he does everything he can to save those persons that he knows exist. Now- these persons he wants to save are so little that no one else can see them and no one else can hear them, yet Horton KNOWS that their lives have value and meaning even though they are so small. Why? because Horton is pro-life! (Suck in a big gasp of air here) yes- he's PRO-LIFE (yes, I do know that Seuss said he did not want this story to be portrayed in that light)!

With the throwing around of words and making the issue of abortion being a woman's choice, we have mostly lost site of what it is truly about. It's about destroying a person. The bible says thou shall not kill. Our law says you must be punished, even with the death penalty, for committing murder, but by dehumanizing a person and giving them the status of fetus we have reduced the killing of people to "it's a woman's choice".

I know- some of you may be gasping at my words. You have bought the line about it being a woman's choice and you are pro-woman, pro-choice and you can't see what I'm really saying. All you can hear is that I believe in taking away a woman's right to choose. That's not what this is about. I am saying to you this: A person is a person, no matter how small. The sixth week of gestation (maybe only two weeks after most woman find themselves pregnant) the developing person has their heart and brain activity. By the end of the 12th week the little person is scientifically called a fetus. Fetus is Latin for offspring, by the way. And your little offspring is a person. That group of cells doesn't develop into a frog, dog or cow. What else is an abortion doing if not murdering a person?

Let's think about Horton and how hard he wanted to save the persons he knew existed even though they were so small he couldn't see them. It is no different today... for the world we live in doesn't see the tiniest persons of all, either. They are hidden in the wombs of women. They are tossed in the trash and pretended that they never existed. If only we could all believe like Horton does...because a person's a person, no matter how small.