Warm at last! Warm at last!!!

These bear hugger warming blankets are AMAZING!!!

 Parker's temperature has been extremely low. Hypothermia is considered 96.something and Parker has been hanging out at 92-93 degrees. Yesterday his ear temp was 87.4 and his rectal temp was 91.9.

 His pediatrician nurse called me yesterday after I left a message about his temps. She said she had been researching him all morning and to take him to the ER. Now.

 She called ahead and they were expecting him. They had his room warmed to 80 degrees and a bear hugger ready. It is this amazing plastic bubble wrap blanket thingy continuously filled with warm air. I want one. So does he. :)

They did a CT scan and are running a bunch of tests to rule out infection. We spent last night in the ICU where they could continuously monitor his temp and continue under the bear hugger. At first he was so so so so cold and lethargic. Then he was pink bordering on red and lethargic.

Now he is blissfully pink, at the right temperature and smiley and happy.

Yay!!!! Warm at last!!! Now the trick is how to stay that way...

What a week. First of all Parker started walking in his gait trainer again. He has not walked consistently or really at all since we started the Sabril seizure medication back in the beginning of November 2. When we started it, he was seizure free, but all desire to move and walk stopped. He is now actively trying to roll and he walked in his gait trainer this week!

Yesterday in the bathtub he was splashing and playing and smiling and said mom four times! Yippee!!!

So some really good things are happening. This week has been incredible and intense and it's amazing to look back and see the hand of the Lord in how everything has clicked right into place.

Last Friday I spent over an hour calling trying to make an appointment with GI. Parker needs g tube supplies and you need a GI for that. The Children's Hospital could get me in in April. They suggested I call his neurologist and see if we could get a doctor to doctor call and get an urgent appointment. I called, and got disconnected. Then I called Rady Children's in San Diego to see if they can pull some strings and left a message. Then I called Gillette Children's, a rehab Specialty Hospital, but they don't do anything as mundane as g tubes. During all this, someone called and left me a message. I listened to the message and it was reminding me of an appointment on Tuesday with a doctor I did not recognize at all. I called to investigate, and apparently it was an appointment with a GI doctor that I made back on December 9 with the University of Minnesota Children's Hospital. Really??? That was quite convenient. :) There are four Children's Hospitals in the area and so it gets a little confusing.

I was actually trying to decide which hospital system to go with and figured I might as well keep the appointment and then decide after. I went to the appointment and the doctor was fantastic. He spent a bunch of time with me and called his care coordinator at his office and she found me a Pediatrician in my area that would be able to act as a primary care and oversee all of Parker's needs and specialists. He highly recommended her. Then he called over to Cardiology in Minneapolis for me and helped me make an appointment there as well the next week.

When I went to check out, I learned that this particular clinic in St. Paul saw Cardiology as well and they had an appointment the very next day. They are a lot closer to me so perfect!

Parker's circulation has been very poor since we moved here. His hands and feet have been purple or blue and he's always very cold, even when he is inside. He hates the cold and does not like that we moved him to Minnesota one bit! His skin is often very modeled and his cheeks will get really flushed. His heartbeat is very slow and we're just concerned about him, as is the neurologist. The cardiologist we saw was fantastic. He was kind, thorough, and listened very well. He was also very concerned and ordered an echogram and a halter monitor to rule out heart issues.

Darrell is studying cardiac electrophysiology with his new job and loved having Parkers ECG to study and look at. It just so happened to coincide with the exact thing Darrell had been scouring and studying for the past 2 days for work. I called him on the phone and the doctor was able to speak with both ofuispp  He addressed all of our concerns before we could even ask.

I came home and scheduled an appointment with the Pediatrician Monday morning and also scheduled an appointment with Endocrinology for later in the week. Children's Hospital was not able to get me in for several weeks with each of these appointments and by the time all said and done, I will have seen four specialists in one week (and two days) all of which were scheduled since last week. They are also all in the same system so the Pediatrician was able to pull up all the information about all of the specialists and their notes.

So now for this week. I took Parker to his appt with the Pediatrician and she was wonderful. They took his temperature and it was 93 degrees. They took his temperature again and it was 93 degrees. They took it a third time and still 93 and they did a rectal temperature and it was 94 degrees. That was a bit concerning. It is common with brain injuries for temperatures and pulses to run slow and low but that's a little too low. Hypothermia us before 96 degrees, yet he was happy and engaged.  So weird.

She wanted to do a blood draw, and the cardiologists had wanted to do a thyroid check  but they were unsuccessful drawing blood last week. After I knew they were going to draw blood I went to the car and grabbed his gtube supplies and pumped him full of fluids and wrapped him up and got him as warm as I could because they've had a lot of difficulty lately getting a blood draw. I also prayed really really hard because we needed the thyroid test and his circulation is so poor and it is so hard to watch them poke him over and over and over again. The phlebotmist did a wonderful job and we were barely able to get enough blood. 

Thankfully the doctor was not panicking with the low temp, so neither did I. Until I left.

I continued to take his temperature throughout the day and it averaged 92 - 94 degrees. We stayed up late last night finishing our taxes, but then I was wired and couldn't go to sleep and so I started looking up hypothyroidism which led me to hypothyroidism and hypothermia. I checked his temperature again at 2am and it was 92 degrees and I was scared (and exhausted) and didn't know what to do. So I woke up my poor husband crying and he suggested I bring Parker to our room and bundle him up so we could keep a closer eye on him. He thankfully was the voice of reason that he had been this way all day and probably longer, a few more hours would be fine. Which was good because I had no idea where the U of M hospital even was.

The weird thing is Parker's temperature was so low, yet he was happy, smiling and even laughing last night.

This morning I checked his temp again and still super low so I called the pediatrician to get the thyroid test results. She called back and the tests were all normal. What? She said that she'd been thinking about Parker all night long and was going to call his cardiologist, neurologist, and endocrinologist this morning. There's only so much I can do for my son, & I cannot tell you how wonderful it is have a doctor go to bat for Parker like she did today. I received a call from Endocrinology and they scheduled a bunch of tests on Thursday. Most everyone thinks that it is related to hypothalamus dysregulation. The hypothalamus is the part of the brain that controls autonomic system in the body. This would also explain his low energy, constipation, weight gain and various other issues we're dealing with.

I had mentioned to her that we had an appointment with Mayo Clinic in a couple weeks that I scheduled long before we ever moved. She recommended that I keep that appointment. Apparently there are doctors at the Mayo Clinic that specialize in automatic dysregulation and dysfunction. I called them right after getting of the phone with her. Well, actually I called Darrell first, and then them. :)

We will see what the Mayo Clinic decides. They said that they may want to admit him to do some further testing, which is actually totally fine with me because I've learned in certain situations it is so much easier to see doctors when you're actually in the hospital. Especially when you live 2 hours away. And we need answers. And we are in the exact right place to get those answers.

Now back to what I said about seeing the Lord's hand in this. 1 week ago today I did not have any of these doctors or even a hospital system or Pediatrician. In one week I was able to schedule and see the GI doctor, cardiologist, perfect Pediatrician and Endocrinology. The day I went to the Pediatrician happened to be the day that Parkers temperature was so low and they were able to record it. The Pediatrician was amazing today and I see Endocrinology the day after tomorrow.

I know I'm not in control of my life, which has been a hard lesson to learn, but I cannot think of anyone better to put my life, and Parker's life, than in the hands of Heavenly Father's because he sees the whole picture. "When the Lord asks us to step into the dark, we need to remember it is not dark to him, for he sees it all. When he asks us to take a leap of faith and step into the unknown, He is simply inviting us to see what he sees."

This quote has had to be my mantra for this whole move, and I cannot think of anything better to epitomise my week. I'm so grateful.

Tonight I am so incredibly grateful. Parker walked in his gait trainer for the first time tonight since he started the Sabril back in November. He walked several laps around the kitchen. He would walk in a straight line down one side of the kitchen and I would give him a bit of Graham cracker. Then turn him and go to the next wall. Then again, around and around the island. It brought me to tears he was walking so well.

When we started the Sabril I was so incredibly grateful that the seizures stopped, but so very worried and sad that his innate drive to move and try was gone. He was often limp and content to just sit and chew. He would not walk anymore. At all.

Plus with the move, therapy has not been as consistent and it is hard to be motivated when it is so discouraging. Even just this week I put him in the gait trainer and he would only go a few steps and then stop.

The last two days have been awesome. I patched his good eye for much of the day yesterday and I think it really helped. Yesterday I was working on having him roll over. I would put a plate with 3 pieces of food just out of his reach and he would have to roll to get to it. Food is a great motivator, especially at mealtime. :)

I was doing this earlier this week and he would feel around for the food, but not seem to see it. Today he was actually looking at it and continuing to look as he rolled towards it. His drive is sooooooo much better today.

My sister once said about how hard Parker worked and tried "how many 2 year old do you know with a work ethic?" I am so so so so so grateful to see him getting that drive to try back. I have missed it. I really hope it continues and we can have a great week. I sure love this little guy. And those wonderful siblings of his. I am one lucky mom.

A sweet little boy was so cuddly and slap happy last night. I am sure grateful for this little guy. I loved reading through all of the New Years Facebook posts and how hopeful everyone is for 2016. So am I. We just moved to our new home in Minneapolis and things are good. Parker is 8 weeks seizure free and he is happy!!!

I have really hesitated to say anything in case I jinx it... But Parker has been seizure free for 29 days!!!

This has been incredible and miraculous!!!! but also worrisome and disheartening because the side effects of these seizure drugs are so hard.

But mostly I am just so grateful for this sweet tender mercy.

I don't remember the last time I posted, but several weeks ago I had a devastating phone call with my neurologist that left me sobbing and probably the most hopeless I have ever felt. My sweet 10 year old daughter came over and gave me a hug, and then wrote me this:

Being BRAVE is not having no fears, but having the courage to face those fears.

We decided to start a new drug- Depakote. We did the normal drill of starting the drug, then increasing each week until the side effects were too bad, then going back down to see if there were any effects. Most drugs he's been on have increased his seizures and they improved only after we came down and off each drug. Depakote was weird. It at least had some effect. In some ways he was better, in some ways worse. Many of his clusters would only have 1 seizure, then others would be worse with even up to 28 seizures or spasms in a cluster. And so inconsistent. Usually he is consistent almost to the minute. See??? Weird.

I began researching more about a hemispherectomy and asked my Neuro if we could try Sabril, a medicine for infantile spasms. My plan was to rule it out before pursuing surgery. I really didn't want to start it because it has a box warning that it can cause permanent peripheral vision loss. But in the grand scheme of things, this risk is much less invasive than removing or disconnecting half the brain...

Anyway. Long story short. We started it Friday...  And he was seizure free on Saturday! He has remained so for over 4 weeks. I still have trouble believing it. He went from averaging 8-10 clusters with a total of 20-50 seizures a day ... to zero.

Normally you start him on the lowest dose (5 ml) and move up 2.5ml until it works. He responded on the very lowest dose, but was also super tired, lethargic and even flaccid so we brought it down 0.5 ml after a week to 4.5 ml.  And down again the next week. And again. And again. He is now on only 3 ml.

At this dose he is seizure free and not nearly as sedated. He is still not walking in his gait trainer like he used to, but he rolled over in his crib this week, and he noticed and pulled at a poopy diaper for the first time since his accident. He also is grabbing my food and reaching for toys. I can finally say he is officially sitting. I can now set him on carpet surrounded by toys and walk away for a few minutes!!! With minimal support he can both pull to a stand and sit back down into my lap. He can stand with me only holding onto the back of his pants.

He eats extremely well and is getting pretty good with a spoon in his left hand. He still doesn't drink but I am going to be able to focus on this and other things now that the seizures are under control for the moment.

I was gone this week and he said "mama!" He signs "go" consistently and "more". He is happy and engaged and I am so grateful.

Oh. And we're moving this week... to Minneapolis.

Like I said in the last post, things have been anything but stable.  Some days he does GREAT!!!  Other days Parker has tons of seizures or is super sleepy from the drugs.

Some great things have been going on, though.  First off- if you ever have a chance to go to a conference on something you are dealing with, GO!!!  This past week I went to an AMAZING Epilepsy Conference in Anaheim and it was amazing.  They had about 50 vendors and experts in all areas ranging from The Brain Recovery Project, to the Chelsea Foundation that provide grants for seizure monitors, to seizure detection/service dogs, to new medications, to several hospitals that were represented.

This is pretty incredible that he is mimicking sounds.  What does the wolf say?        

Then the best part is the speakers. Different speakers every half hour that are experts in their fields speak on the newest technologies and treatments available, and then open up to questions from parents and patients at the end.  There were speakers on Autism and Epilepsy (my sweet nephew deals with both), Ketogenic diet, service animals,  several neurologists and neurosurgeons... My favorite was a talk "New faces in Neurosurgery" introducing the newly hired neurosurgeons at UCLA and Radys- the two hospitals we are affiliated with.  They both spoke, explained their training and the new amazing technologies at their hospitals and then opened it up for questions.  The more I learn and the more time that goes on, the more we are leaning towards needing a hemispherectomy (where they remove or disconnect half of the brain).  With Parker's seizures being so incessant and hard to treat, and the fact that the entire left hemisphere of his brain is ischemic (damaged) tissue anyway, it is looking like more and more of a possibility.  And I am somehow at peace with that.

It was also so encouraging to talk with other parents and families.  One teenage girl I sat next to showed me her seizure monitor wrist watch.  She asked her Dad for permission and then shook her arm several times.  Within half a minute, it texted her Dad that she was having abnormal arm movements.  Then 30 seconds later, it texted her Dad her GPS location.  Absolutely amazing.  She also had a service dog that was trained that when she started having a seizure at night to pull all of her pillows and blankets off her bed and to go get her parents. Wow.

A lot of things are happening.  I had mentioned in my last post about some other medications we want to try.  All medications have side effects, but we are moving into the potentially much worse side effects.  I really did not want to start this particular medication because of the potential permanent side effects, but at this conference I was able to ask lots of questions and get some reassuring answers.  We started it and we will see what happens.

I have hope- and hope is good!!!  We will see what the next few months bring.

Dr. Mathern presenting at the conference.  He is the doctor from UCLA that performed the surgery to remove Parker's skull and vacuum out the blood that saved Parker's life.

Seizure monitor watches