Parker had a fabulous speech session today.  I can't explain how long we've worked on him sticking his tongue out!

1 year ago Parker was having 20-50, sometimes 100 seizures a day.  1 year ago he was on the ketogenic diet, an extremely strict and stressful high fat diet (4 parts fat to 1 part carb) where everything had to be measured to the 10th of a gram to try to control the seizures.  1 year ago we had nurses come every day to help with the seizures, the therapy, the diet, the medication.... Parker had no desire to walk, move, roll, crawl, or sing. 1 year ago all that changed.

On November 2, my husband started a new job for Medtronic in Minnesota. (We lived in San Diego.)  

On November 4th I went to an Epilepsy Conference near Disneyland and asked ALL kinds of questions.  I spoke with the The Brain Recovery Project and learned even more about hemispherectomies. I learned about service dogs for seizures, and tracking devices that track GPS and can sense seizures.  I asked about vagal nerve stimulators and new medications... 

But mostly I spoke with several leading neurologists and neurosurgeons face to face. I asked SO MANY questions about 2 things.  

• A new drug called Sabril or Vergabatrin that has a black box warning from the FDA that it can cause permanent vision loss that was sitting in a box at my house. 
• Hemispherectomies- A surgery where they remove or disconnect half of the brain.

I cannot express enough how incredible it was to go to that conference.  I came home with a plan.   I sent his records to Mayo Clinic and 2 other leading hospitals in the area for hemispherectomy consults. We were moving to an area with some of the best hospitals in the world and we were going to take advantage of that.  

On November 5th I gave Parker the new drug to rule it out.

On November 6th he was seizure free.

He was seizure free.  And has been for over a year.

One year seizure free.

You have no idea how incredible that is unless you have seen a loved one have seizure after seizure with devastating results.  Unless you have seen your little boy slowly slipping away before your eyes.  Your little boy who had come so far... only to slowly lose it little by little.  To watch him stare off and know a seizure was coming... and being completely powerless  There was nothing I could do but brace him and brace myself. Over 8 months we tried 8 different meds.  After 3 meds it is considered intractable epilepsy and meds are very unlikely to work.

I will forever be grateful for Dr. Shifteh Sattar that was willing to try so many meds and listen so incredibly well to a mother.  I will forever be grateful to UCLA and Dr. Shaun Hussain who correctly diagnosed Parker's seizures as infantile spasms, even though he did not fit any of the typical criteria.  Infantile spasms is a devastating type of epilepsy that deteriorates into even more devastating types. They are treatable if caught early, but Parker's were not.  He had seizures for 8 months before they were diagnosed correctly.  That seems so short now, but it was a devastating 8 months full of multiple hospitalizations, titrating up and down off many different meds, trying so many different combinations, and so many different hopes just to have them dashed over and over.  It was hard.

But that was a year ago. A life time away.  

And he is doing so great now! He is happy, funny, learning to communicate through signs or an iPad, he is rolling all over, learning to creep and crawl, puts weight on his right hand, sucks through a straw, is getting his dimples back, can propel himself in a wheelchair, plays with toys, can match pitch and rhythm, loves music and in every way is a delight. We are so glad we got to keep him.

He will always be at risk for seizures. Always. But for now I am enjoying the respite and enjoying my little boy.

Here are some recent videos, but I don't know how to make then work on phones well. The next post has lots and lots of new pictures, though!

 Parker with his preschool teacher

 So handsome after a bath.

Riding the bus to preschool somedays.

 We hung out while the rest of the fam went through a very muddy corn maze.

 I really really love this kiddo.

Resourceful kiddo found the laundry!  Mmmmmm unlimited supply of deliciousness!

 Roll! Roll! As fast as you can!  You can't catch me I'm the Parker man!

 I drink out or a straw now. No biggie. OK REAL biggie

The wonderful things about Tigger!!!  I bounce bounce and bounce and bounce and bounce fun fun fun fun fun!

It has been 2 years since Parker fell 2 feet from a picnic bench and hit dirt. 2 years since he had a massive bleed under the dura in his brain that altered our lives forever.  Let's just say I am grateful to be on this end of 2 years. He has come so far.  I am not sure if I have explained this here, but Parker lost the entire left hemisphere of his brain due to the bleed and subsequent pressure. He had an additional stoke on the right side as well as a stroke on both sides of the front and damage down the middle. He lost almost 3/4 of his brain. He should NOT have survived.  And he did.  Thanks to the prayers of so many of you, the incredible doctors and nurses at UCLA, his drive and spirit and so, so many miracles.  I am so grateful to my Heavenly Father that we got to keep him.  He started completely over 2 years ago as less than a newborn- with no neck control and no reflexes to help him along the way. He has come so far.  I love two quotes that my sister Brittany has used to describe him. "How many 2 years olds (now 3) do you know with a work ethic?" and "tricky adaptable child." I absolutely adore my tricky adaptable child. He amazes me. We got to keep him.  And we are so so grateful.

We just got this mat for Parker. We have been contemplating it for a while and saving up, but these past few weeks both OT and PT have been using it a lot so we decided to get it. We've already used it so much. It is great for crawling, scooting downhill, rolling with his weak side and so many other things. We have used it several times already. And my gymnast girls don't really mind it, either...

Parker's favorite song is "I am a child of God." He is getting so much better at matching pitch. His language center of the brain was annihilated, but he can sing. He responds so well to music and has since his injury. We started music therapy this week and I am really excited to see his progress.

There was a cute little boy toddling around Relief Society at church today. He had blonde hair and blue eyes and he even snuck over and played the piano. Parker used to do that. I cried today. 15-16 month olds will always have a special place in my heart. 

We are getting ready for a trip to my sister's Labor Day weekend. Parker fell on a trip Labor Day weekend.

I just got a sweet note in Messenger last night that someone sent me when we were in the PICU and I didn't get until just now.

My other sister has a dear friend that just lost a family member to a fall and a TBI.  They buried him this week.

My baby fell two feet just shy of 2 years ago.

We are doing well... mostly.

Tonight I had a really sweet conversation with my six year old son. He was waiting for me to read him stories. As I was giving Parker his meds, Devin said "I wish Parker didn't fall."

I asked him if it was because he misses his playmate or if it's because bedtime take so long, or both. He said both. He said he wishes he could hear Parker speak and hear his voice, like his cousin that is the same age. He wants to hear his voice.

We talked for quite a while, and we cried together. I told him about the little girl that fell the same week that Parker did that did not survive, and how grateful I am that we got to keep Parker. And that I would rather have Parker with us any day, even if that means lots of therapies and longer bedtimes because of meds. Parker is sweet and happy and he loves his brother and sisters. Even if he can't ride his trike at the park.

I also talked to him about when he (Devin) was 2 years old and got really sick and I took him to 2 doctors and ultimately the ER. They gave him heavy duty antibiotics that did not work, and ultimately they did surgery. I was speaking to the surgeon after the surgery and asked what would have happened I hadn't brought him in. He said " he would have gotten sick enough you would have brought him in." He was sleeping 22 of 24 hours. How much sicker could he have gotten???

I am so grateful for the spirit that prompted me to go wake up my little Devin that day instead of letting him sleep. He was burning up and he pointed to his neck and said "neck hurt." There was a large bump on his neck and red lines and my mother's instinct said "hospital NOW."

The surgeon said if we had waited too long the infection (he had a retro phalangeal abscess) could have burst and spread to his heart and lungs and we could have lost him.

I was telling Devin just how sad and devastated I would have been if I had lost him 4 years ago and how much I love him, and how grateful we did not lose Parker. We were both crying.

I love my kids so much. And my husband. And I am so grateful for hospitals and modern medicine and that they have saved my 2 of my children's (and my husband's) lives.

I am so grateful.

Someone wrote this in response to a young mother's question on a CHASA (Children's hemiplegic and stroke association) Facebook support group that I absolutely love.

I love what this person wrote and wanted to keep it.

Paul Fulton

A few quick thoughts. Our little guy (RH) is now 8. The myriad of emotions that we have felt in the last 8 years are indescribable. We have gone from total despair to unlimited hope. We have blamed ourselves and we have recognized that we can't, only to return to blame ourselves again. We have never felt more weight as parents and we have never felt more joy as parents. Here's my point: Having a child with a disability is to be exposed to pure love in its raw and unmitigated form. To love someone so much that their struggles literally hurt you. To care for someone so much that all of your desires take a back seat to theirs. To desire happiness for someone so much that their success is continually on your mind. That's a gift (albeit, sometimes a miserable gift). We're all learning how to love purely and how to give entirely. Isn't that at least one of life's purposes? I think that I can also safely say that your little baby is going to surprise you and exceed your expectations over and over again. These kids have a fire within them that is like nothing you will have ever seen. It's inspiring to witness. It's so hard and so rewarding all at the same time. "That which we obtain too cheap, we esteem too lightly." You are a young mom 
who has learned at a young age to love entirely. Your baby is lucky to have you.

Parker just took 2 steps on his own. No hands. No gait trainer. With even less support than this picture. He is still so far from walking on his own, but this is HUGE!!! And it made me cry.

He also babbled a full conversion with his OT this week, and others, looking them right in the eye and intently babbling away in turns.

He also touched his speech program, Proloquo2go with only 1 finger-instead of whacking away at it. Which is also HUGE.

And he turned pages of a board book instead of eating it. And looked at the pictures with me.

This little boy amazes me every day.

Therapy buddies hanging out in the swing.

I sure love these boys.

We explored a new fabulous park last night. These pictures don't do it justice. As we crested the hill my son dashed towards it and exclaimed  "This is EPIC!!!" We played for hours.

 We tried mirror therapy in OT today. It helps to trick the brain into remembering that you have a right hand because you see both hands moving at the same time. He was funny and kept peeking at himself in the mirror or behind it.

We got a cat this week. She has managed to endear herself to all of us. She came over and snuggled with Parker and was so incredibly patient as he mauled her. This gives us lots of opportunities to teach "soft." He loves her and gets super animated when she is around. He's even been trying to say "ditty."

Mmmmmmmm corn.

There are so many fun lakes to choose from here! We have discovered the best way to make lakes fun is having one of these contraptions for his arm on hand. He eats EVERYTHING-be it rocks, sand, dirt, grass, clover, his shirt, your finger as you try to dig a rock out, your friend's finger if she forgets and tries as well...  this "no no" makes it so he can explore and play, but makes it very difficult to stuff handfuls of moss, dirt and sand in his mouth. Perfect!!!

Haircuts all around

We went to the amusement park in the Mall of America and had a glorious time. I snapped this picture just after we came down the plunge on the log ride. Parker LOVED it! We all did.

Minnesota is treating us well 😃

I really want Parker to crawl. His initial PT said that he might never crawl and would probably walk first because of the weakness in his right arm, but the only way I could get him to put weight in his right arm is crawling. And the first step to using that right arm is weight bearing. And I want him to use that right arm, despite the fact that his brain didn't think it exists. I am super motivated. He..... not so much. Recently (this week), things are finally getting easier with crawling.

Imagine trying to teach someone to crawl when he cannot hold himself up, or even put any weight in either arm, let alone straighten his right arm at all, cannot move his right or left leg and when he tries, his whole body goes rigid into extension and his legs shoot back, collapsing onto his tummy and you have to start all over, break the tone, wrestle him back into position... over and over.  It is a full body exercise and he is not the one exhausted at the end.

He slowly, very slowly, has been getting better. He has less tone (which is rigidity due to miscommunication from his brain) in his body. He can actually bend his knees. He has recently been putting weight in his right arm. Just this week, he actually moved his left arm forward, and his left knee now moves forward instead of shooting back, and occasionally I can block his right leg from shooting back if I position my foot just right to block it, and I think once this week his right arm actually moved forward. This is MAJOR progress and I am super thrilled.

I am a bit excited. Can you tell?

Most of the progress and breakthroughs have been this week. I was showing his occupational therapist the progress he's made and she said she lays awake at night thinking about him and how to help him. She wished there was some way to strap him to her to remind his brain the right arm/left leg and left arm/right leg pattern. (Did you know the arms and legs move oppositely consecutively- try it. It's true)

Before I left, we tested it and he fits perfectly under me... And I happen have yards and yards of Velcro from buying it online in bulk (see????I knew it would come in handy). The result????

Parker is doing really well- the best he has since his injury.  His surgery 3 weeks ago has been a huge success. (It was a third ventriculostomy where they went into the brain and made an opening in his third ventricle to remove some fluid and relieve potential issue on his hypothalamus) He is more alert, engaged, laughing ALL of the time, reaching further for toys and apparently he is rolling now.  We have been working on rolling for the last year and a half, and he's just... rolling now.  Last week he wasn't, this week he is.  Across the room, across hardwood floors, over blankets and pillows, into delicious cords...  soooo we have been doing a bit of baby proofing this week as well. :)

The surgery was interesting because it was a brain surgery, but it was sort of elective.  The neurosurgeon said "It could really help, it could do nothing."  I had so many questions and so many unanswered possibilities, but I went with my gut and my mother's instinct said do it. Darrell pointed out that this is the first surgery we've done that could actually improve things.  We felt good about it. so we did it. And of course not everything went perfectly, there are some random side effects that no one has ever seen before (of course) that may or may not be permanent.  He has nystagmus now- his right eye will twitch back and forth. But at the same time, I will take my happy, engaged delightful little boy who is making incredible strides right now.

My favorite story with his new "laughing ALL of the time" was last week.  We had therapy right after a doctor's appointment so we grabbed some food on the way.  I got a Chicago dog and got Parker a slice of pizza, but there was a bit of a wait so we did not have time to sit and eat. I asked his speech pathologist if we could do feeding as part of his therapy that day.  He made choices, tried different kinds of bites or chewing...the usual for feeding therapy, but he kept putting his thumb on the roof of his mouth.  Apparently the cheese kept getting stuck up there and he couldn't get it with his tongue.  It was soooo funny (you had to be there) so we kept laughing, and then he would laugh.  Then the next bite got stuck again and he just laughed and laughed.  Then the next bite got stuck and he laughed and laughed.  I really wish I had videoed it (I was out of space).  It was so sweet, delightful and HILARIOUS to watch. I love how often he laughs in therapy and procrastinates by giving hugs to his therapists. :)

Every day new things are happening.  Most good, some not so good (he is a lot more agitated right now and has bit several people in the last couple of weeks including my niece and both nephews and a few of his sweet therapists. SORRY!!!!!!!)

I have been reflecting a lot lately on perspectives when you come so close to losing your son. He is a miracle.  Hands down no questions asked. He should not have survived and most kids or adults
with similar injuries did not.  That is one reason why so many things and side effects baffle his doctors.  We truly don't know what we are going to get- what he will achieve- or what he will not.  But I know this.  He did stay and we did get to keep him.  He works so hard everyday to overcome incredible odds.  He surprises me and delights me and we are profoundly grateful for him.  Is it challenging? Absolutely.  Would I have it any other way? Not a chance.

I am so grateful and just astounded at the medical care, wonderful schools, long term disability care, and incredible therapies all coupled with "Minnesota nice." There is almost no competition between doctors, hospitals and therapists. It is so incredible to see so many people work together to do what is best for my son. In just the past week (since Tuesday) Parker turned 3, had brain surgery, was hospitalized overnight, had his IEP meeting, an ER visit, we met with our long term disability case manager from the county and we had 3 different appts with specialists, not to mention all of the specialists they have consulted with as part of our appt. These were all at different hospitals- either Mayo, U of M or Children's. The doctors have all consulted with each other so incredibly well. There was no "oh you have to come here." The appt I am just leaving the doctor even said "Go see him. He is the best in his field." It is absolutely INCREDIBLE. I am so so grateful

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...

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!!!