Today Parker liked his corned beef  so much he was sucking the juice on his fingers.

He was sucking on his fingers.

He was sucking!

I have hoped and prayed for a year and a half that Parker would learn to suck again.

I was so excited I went and grabbed a sippy cup and filled it with some apple juice and he sucked and swallowed!!!

He also is starting to bear weight on his right arm when on his hands and knees without me having to lock  his elbow and push his right hand into the ground. When I move his right arm, he moves his left leg and he will sometimes trust his right enough to move his left arm, but his right leg will shoot back from the tone and he will collapse to his tummy. This crawling thing is tricky. But tonight he didn't collapse to his tummy. And he actually moved his right knee!!!

He is walking in his gait trainer and he will now walk again with us holding under his arms. He is laughing, shaking his head, interacting and starting to get bored!

He will actually shake a toy instead of just chew on it. He signs for more. Says mom occasionally, and is staring to babble ddd and zzzzz and mmmm and nnnn and ahhhh. When you ask him to do something, he understands. You can see him stop and really think about something. He is starting to move his right hand. Today the therapist asked him to hold her hands. His left was instantaneous and you could see him thinking. Then he moved is right arm down... around... up... and into her hand!

So many moments this week to take my breath away.

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...