This morning his MRI went really well. Normally I am not that nervous about things like that, but with everything going on, I was really nervous for him to go under general anesthesia this morning. The anesthesiologists were amazing and very compassionate and understanding and really appreciated me telling then about his low body temp, low heart rate and low blood pressure. I got to hold him while he fell asleep, laughing I might add. He is such a sweet kid.

They called me back sooner than I was expecting and he was calm and asleep. Apparently he didn't even cry much coming out of anesthesia this time. He slept for a bit and then woke up happy. What a blessing.

Darrell and I are finally learning enough to know some of the terms to research to learn more about Parker. Remember how I said this was rare? Apparently there are about 50 reported cases is the WORLD. No wonder so few doctors have heard about it.

Today was incredibly helpful. At first I was worried it might be a wasted day away from home because I only had 1 appt with the endocrinologist. But she was totally worth it! (Way more informative than the other one I saw who pretty much said "it was neurological and not her problem. See you in a year." I thought "no, actually, you probably won't.")

I will definitely have the Mayo endocrinologist follow us. She asked what I knew about the pituitary gland and then proceeded to draw out (and give me) a detailed diagram of each hormone the pituitary gland controls or releases, what each hormone does, and what to look for if it is not functioning properly. Right now all of his hormone levels are spot on, but that could easily change since his hypothalamus is disregulating. There is so much I could worry about with this little guy. It was so helpful for her to talk me through what I need to worry about, what I don't, what to watch for, and when to bring him in. Wow. Knowledge is so incredibly helpful and powerful.

We had cancelled the Ketogenic dietician appt yesterday since he is no longer on the diet, but as I am learning more, I asked to talk to a dietician today and the endo got me set up right after our appt. One thing the hypothalamus regulates is appetite and it tells you when you are satiated. Parker will eat and eat unless we stop giving him food. He puts everything in his mouth (food or not) and his need for oral stimulation and chewing is huge. I had noticed he would never let us know when he was done, so we've been limiting intake (which is hard to do as a mom when it is the one thing that gives him so much joy,) but he had started gaining some weight a few months ago and we were concerned. I'm glad we realized this early on.

The dietician was wonderful. I told her "I've managed to feed and raise three kids just fine, I don't know why this one's being so tricky," but she said this one is totally different. Both her and the endo emphasized that we will need to be his appetite.  She calculated his caloric intake for meals and snacks and helped me know easy ways to estimate his portion sizes. So helpful. I love to have tools in my belt and knowledge to move forward. Apparently you base the portion off his own fist size. Cool.

We do pretty well with him, but the main time we get into trouble is if Darrell has been feeding him, then I get home and he is asking for more food so then I feed him, then someone else comes along and he is asking for more food... My main plan is to portion out his plate when the meal starts, then give him small amounts at a time, that way I can keep track since I have no idea how I might possibly get distracted feeding all the rest of my family let alone myself. Whew. Big sigh. We can do this.

Then they got him in for an x-ray right after to get a base line for his growth plates so we know if he starts growing too fast. They really are quite efficient.

Afterwards Parker and I escaped the hospital and went for a walk to a great little Thai place a few blocks away. We thoroughly enjoyed our date. What a sweet little guy.

We got up this morning at 4:30 am to drive down to the Mayo Clinic. I am really hoping to learn more about his low temperatures and if it is from hypothalamic dysfunction and what that means. I like the term dysregulation better. :)

So far we've done a 1 hour EEG where they used a hat with electrodes instead of gluing on individual electrodes. I failed to take a picture, but it was cool. Parker is starting to have staring spells again. We are doing another 24+ EEG later this week so hopefully we can figure out what is going on and keep him seizure free.

He had a really long one today - a full 3 minutes of staring with his tongue sticking out, right arm raised and unresponsive. I captured it in video and showed it to the neurologist. We will probably be going back up on meds again.

Apparently there are not doctors here that "specialize in hypothalmic dysfunction" like I was hoping and had heard, but she at least does have another patient that is manifesting in similar ways. I wish there was some way I could talk to that other mom. Silly HIPPA laws... It is incredibly, incredibly rare. My other neurologist, and the one at the U of M have never seen this before.

We are supposed to be life long learners, right? This little guy is keeping me spry.

Funny little boy

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.