June 26, 2012

Robertson's homecoming

We have been home one night....and I wish I could say it has been easy but he is still having problems.  I think it is side effects still from the IVIG.  He has intermittent horrible stomach pain, vomiting and a bad headache.  I have spent the morning on the phone with different doctors and nurses.  I am blogging now to pass the time while waiting for more phone calls to advise me as to what to do. 

I need to go backwards a little since I didn't blog for a day or so...I can start with some blessings and fun pictures.

On Saturday and Sunday, the whole family came to visit.  We had them come in smaller groups at a time so that Robertson (and the nursing staff) didn't get overwhelmed. 

As soon as I. came in, he went straight over and have Robertson a big hug....I *know* that I got a picture of them...but it either didn't actually take somehow or someone deleted it. :(  Either way, I'm very sad about it but glad to have a blog where I can record it for history that he is such a sweet and compassionate boy.

K. and Robertson had fun sharing a pomegranate together:

I also got more pictures from the first group that came through because my camera battery was dying.....just a disclaimer that I wasn't playing favoritism! ;)

Robertson took Emily and Eleanor down to the play room in the hospital.

                                                Eleanor absolutely loved the fish tank!

You can see the tank on both sides....yes, that is a fish that looks like it is sitting on Eleanor's forehead!

 The last night in the hospital was fairly difficult.  Robertson got very ill from the IVIG...possibly because it was day five of treatment and  from the build up of the previous nights.  He had a horrible headache and repeated vomiting.  He was miserable and I was so appreciative for the angel of a nurse we had who did everything she could to help try to get him feeling better.

He finally perked up by later in the afternoon and we did one last session of physical therapy whereby he started complaining of his ankle hurting.  She wasn't super aware of Guillain-Barre issues so she thought we should go back to the room.

The wait for discharge from the hospital seemed to take forever, so Robertson and I were in high spirits when we finally got our "get out of jail free" card! :)  I was exhausted from the night before but hungry so I asked Robertson where he would like to go eat to celebrate. 

To my surprise, he wanted to go to Sizzler and get a steak! 

And here is where another surprise (at least to me) comes in....

I had been absolutely, consistently emotionally fine for the last few days...I promise, I was!   I was able to tell the entire horrible story to doctors, nurses, friends, family, and even the Guillean-Barre foundation representative that came to visit without a hitch in my voice or a tear. 

But, as we walked into Sizzler, Robertson began complaining about his legs hurting and he stumbled a bit to step up on the curb while covering his one eye(he is still seeing double vision).

All of a sudden, this flood of emotion consumed me and I really wasn't sure if I would just have sit on the curb outside of Sizzler, crying and rocking and holding him. 

I didn't....I was able to keep walking into the restaurant and I was even able to order.  I'm sure I looked odd with crazy frizzed out hospital shower hair, capri's that were brought to the hospital by my husband that were missing a button and a too tight shirt, a little boy with big bandages on his arm and a squinted eye....all put together with my "must have been obvious look of distress" that was nearly uncontrolled and unravelling by the minute. 

But, if the cashier noticed, it sure wasn't obvious....she chomped on her gum and looked utterly bored and handed me the receipt to sign.

We limped through getting some food...I just waited for my throat to periodically unclench and I would speak before I would get emotional again. 

Back at the table, Robertson sat across from me at first and then suddenly his little head disappeared under the table and popped back up next to me.  And, so, the two of us sat in a huge red booth with the two of us side by side.

He looked over at me and said something that once again grabbed my gut....

"Hey mom, I know what I want to be when I am older?"  (My mind racing to how glad I am that he has that chance....)

I choked out that I didn't know...

He joyfully said that he wanted two jobs...the first part of the day he wanted to be a scientist so that he could blow things up!  Then, the second part of the day, he wanted to be a food critic and eat things like steak. :)

I agreed with him that it sounded like a great idea.....

So, there was the ending of two of some of the hardest weeks our family has ever seen. 

Here are my two babies that I am so thankful for and so so sorry for the hard times that they have had....

Emily's arm is starting to heal and after the third seizure and beginning her meds...she has been just fine....

I love these two with all my heart and soul....I am so glad that they are still smiling and okay....and I am deeply grateful that Heavenly Father brought these sweet children to me. 
I promise and pray that I don't take that responsibility lightly and will do everything in my power to keep them safe and well with God's help....

June 23, 2012

Look what God can do!!!!!!!

I am so excited and happy to write this blog post!  Robertson is fully walking on his own again!!!!  He is making leaps of recovery every single day! 

It does appear that he had Guillain-Barre Syndrom with the Miller Fisher variant....a very very rare and serious auto-immune disease that quickly paralyzes the body....so quickly in Robertson's case that in days you can take a normal child and then find them virtually unable to move.  If it is allowed to continue, many will be on life support for some time due the disease progressing to their chest and lungs. 

The progression for Robertson was...eyes (double vision/crossing due to paralyzed muscles), voice-high pitched and nasal sound, coordination (Robertson said he felt "tumbly"), then on to weakness of the legs, loss of reflexes, and eventually loss of core muscles....you see where this was heading?  This is why I am soooo grateful for a rapid diagnosis and start on the medicine.

Here is my sweet baby...standing completely on his own!!!!  This is something I had better not take for granted ever again!

He worked with the physical therapist today on re-learning how to climb stairs.

He also learned how to be safe when getting up and down....you can tell he was having fun!

Then it was time to rest for a bit.......

We later walked to the play room for their painting activity...

He painted an adorable apple tree......

But, he began to get silly and really wanted to paint a mustache on me!  Since that didn't fly, he painted a picture of me....*WITH* a mustache, of course!

Then we headed back to his room for lunch...he isn't making a face because he doesn't like the food....

He still has to close one eye to be able to see.  Although, he is growing weary of the "soft and moist" diet which means he gets ground up chicken and pureed vegetable soup.  But, at his worst, he has had some swallowing issues, so it is important that he fully recovers before eating the harder foods like pizza or apples.

We have two more days of IVIG therapy in the hospital and then we are very hopeful to be heading home.  We know that there is still some road left ahead of us but we truly are thankful for his amazing recovery!

Do I love and appreciate this baby and the time that we have together....

             You bet I do!!!!!  I am so thankful to God for him!!!
Here he is in absolute victory....a child who would likely have needed life support if we hadn't gotten a diagnosis that quickly.....is now standing strong:


June 22, 2012

Robertson's ups and downs...

Yesterday was a much much better day and....dare I say, there were moments that were a little boring!  I cherish the slow boring times now....

Robertson did very well on the prednisone and IVIG treatment last night and his eye is less droopy.  The neurologist said that some of his strength was coming back into his lower legs and feet....just still needs more strength returning to his thighs and core of his body.  Still has double vision and eyes turn in and can't trace a finger from side to side much or up and down.

I did have one scary moment during the day.  The intensivist (the PICU doctor) came in and asked me if I knew about the MRI findings.  My heart immediately began to race and my stomach went cold.  I asked him what he meant...that I had been told that it was normal.  But, I did know that the MRI results were being put in front of yet another radiologist and hadn't heard anything from that yet.  The doctor asked in surprise that my neurologist didn't tell me when he came in?  I again stated, "No!"  Then he began to back peddle a little and said that he wasn't sure that it was meaningful but that some finding had been noted on the MRI results and that he would check on it and then he left. 

ACK!  Seriously, if you aren't sure yet....*please* do NOT tell me!  I know some parents might feel differently but I just want to be told once there is a known problem.  It is way too scary and stressful.  He did call me later and told me that he had spoken with the radiologist who did not think that the MRI was abnormal and the finding was not significant.  Geesh!

But overall, Robertson mostly watched movies, played an interactive computer game, and happily goofed around with his very fun and loved uncle who came to visit (he said "this is the best part of my day!")....OH!  And, he got to EAT!  Between the MRI procedure and the concern for his swallow, he had not eaten for two days...and he was miserable.

 The speech therapist watched his swallow and decided that he could go on a soft food diet.  He ate every bit of the food that she brought to work with him like applesauce, banana baby food, and saltine crackers.  Then his lunch came and he ate nearly every bit of it.  They wanted to take it from him since his dinner was coming but he guarded it like a dog guards his bowl.  So, he happily had continuous food in front of him until well into the evening.

His dad came and his sister Amelia and he got all sorts of activities and toys from his grandparents.  He was a happy boy!


We started the treatment again and I expected it to be just like before.  The benadryl would make him sleepy and the rest of the IVIG would be done while he slept.

Oh my goodness..... that is NOT what happened.   He ended up with an excruciating headache and was in more pain than I have ever seen him.  He cried out and writhed and reached for me....and I got into his hospital bed and rubbed his head and held him close and stroked his forehead and nothing worked to ease the pain.

The nurse got him some Tylenol but I knew that wasn't likely to touch that kind of pain.  He cried and cried and thrashed until I really got upset and asked the nurse to get the doctor...it was ridiculous!  I held him close and prayed and prayed and the nurse came back in and said that the doctor ordered for the IVIG meds to be cut in half and go in slower over a longer time.  They also agreed to give him motrin. 

He finally snuggled in close to me and the crying out got softer and softer until he could fall asleep.  It is wee hours of the morning now and I can't begin to say how much I hope that he sleeps through the rest of the treatment which will last another few hours. 

Onward to three more days (at least) of this treatment.....

June 21, 2012

Robertson update-trouble coming out of anesthesia

Yesterday was a very long day...mixed with moments of relief but mostly moments of trying to quell my near hysteria...the kind of moments where you just know that you cannot even talk or look someone in the eye or you might just lose it completely.

The neurologist came in this morning and examined Robertson and noticed that he had no reflexes in his legs whatsoever.  He stated that it was highly unlikely that there was a tumor because usually the reflexes might be even more responsive than normal but they would definitely still be present.  He had a new theory...Guillain-Barre Syndrome.

We still had to rule out the possibility of a tumor but once the MRI was completed, the doctor wanted to do a lumbar puncture to potentially confirm his diagnosis.

The earliest we could go in for the MRI was 1:00 pm and the doctors wanted to use a general anesthesia called Propofol.  I was very hesitant due to a family fear of  "not coming out" that my grandmother claimed resulted in my great-grandmother's death during a surgery.  I was also terrified of a case in a nearby hospital where potentially bad decisions in regards to anesthesia resulted in the death of a small child that had gone in to the ER for a minor problem.  So, I was really nervous about it.

My fears were put to rest over and over by various doctors and nurses who all confirmed the same statement that this specific anesthesia was very safe and very light sedation that was very quickly reversed...usually right at the end of giving the medicine, the patient would just pop back awake.  I was encouraged and agreed.

I walked over to the MRI building with the tech and was able to be in the room as the anesthesiologist administered the medication.  It was a bit disconcerting to watch Robertson talking to them about our dog, Cookie, one second and then flopped over in a dead weight the next.

I waited in the hallway for a good while and read my scriptures, skyped with my daughter, and tried not to think too much...the nurse came and told me that he had seen the first pictures of the MRI and did not see any brain tumors at all.  He admitted that there still could be something but that it would not be a large tumor or he would have seen it.

I was so relieved and felt like I could breathe again.  He could see that I was strung tight and sat and talked with me for awhile.  I saw tears welling in his eyes as I unfolded the story of our last week, starting with Emily's grand mal seizure.  He made the effort to come out and update two more times and I believe he was one more angel placed in our path...

Finally, they brought Robertson out and I imagined that he would likely be awake already or at least showing some signs of moving around.  He was *very* under the influence and still completely out.

I asked about it and the anesthesiologist assured me that it was normal and he would be awake in 30 min. or less...and soon after reaching the recovery room, she went on her way.

The recovery room nurse started chit chatting with me and we waited......and waited....and waited......

At the 40 minute mark he went over to Robertson and moved the sheet under him a little and Robertson's heart rate immediately shot up and he began hard twitching in his upper body.  It looked just like a seizure but the nurse wasn't entirely sure.  The nurse decided to leave him for awhile longer and not try to wake him up.

As the time kept ticking, I was growing more and more anxious.....now we had gotten to an hour post-anesthesia and he was still completely out.  Wasn't he supposed to just "pop out" of this specific anesthesia?

The nurse began to shift from foot to foot a little and admitted that it was taking a bit longer than normal.

 I began to run my thumb across my hand repetitively...something I don't think I've done before but I guess must be what people do when they "wring their hands".  The nurse began to try to engage me in conversation.  I knew what he was trying to do but it really did help to focus on benign things like, where I had worked for the hospital and what my degree was in etc

At the hour mark, the nurse tried again.....with the same result.  Robertson's body was shaking and convulsing, his heart rate was rising...but there was no Robertson.  I felt cold paralyzing fear run up my legs and they began shaking.  I started stroking his head and silent tears began to fall....the nurse asked me to help to call his name...but I just couldn't.  I couldn't make a noise.

At an hour and fifteen minutes, the nurse tried again and he finally began to move but in an odd unconscious flailing manner with drool profusely escaping his mouth and soaking two pillows and the sheet underneath.  His body was attempting to cough but truly couldn't and the nurse explained that he felt the prior twitching was not seizures but was his body attempting to cough.

  I kept stroking his hair....The nurse tried to re-position him each time his body lurched, but in one large and still nearly unconscious moment, his body hurled across the bed and his face slammed into the hard metal bar of the bed.  I let out an odd stifled sound....I wanted to scream.....we moved him back into a comfortable position and waited again.  This drooling, unconscious, sometimes moaning, little boy that I saw before me didn't look anything like my baby....Oh Heavenly Father....where was my baby.....

At about an hour and a half after the anesthesia was stopped and a full hour longer than was ever expected...Robertson finally began to open his eyes.....he looked over at me.....and he immediately reached toward me with both arms like an infant who wanted to be picked up.  I held him and cried and kissed his head with an amount of relief I don't think I've ever known before.

We were moved to the ICU and the neurologist came in to explain that there were no tumors but he believed that Robertson did have Guillain-Barre syndrome and wanted to start treatment immediately....it is a progressive auto immune type disorder that comes with increasing weakness and paralysis which can be extremely serious if it gets to the chest and affects the heart and lungs or has an affect on the ability to swallow.

I will close for this morning with saying that he has already started treatment.  Last night was rough, involving arm pain while the burning steroids went into his IV, pain in his stomach and vomiting, the need to cough but being too weak to be effective, and an inability to eat due to concerns about his swallow (he will be evaulated this morning)

However, in the wee hours of the morning, Robertson wanted me to lay with him in the hospital bed and we cuddled together and talked and I felt like my baby was slowly but surely coming back.

Last night, I thought about those that have called, emailed, came to visit and have posted comments on this blog. 

 This comment was short and simple but really touched me...

"I'm praying for you tonight (hear, in Germany, where I live it is already night) and I lit a candle for little Robertson."

Thank you to all of you who are praying and sending love to my son.  Right now as we speak...we are watching the sunrise together....


June 20, 2012

Robertson update

I am sitting in the hospital right now with Robertson sleeping by my side.  He has an MRI in the morning and the doctor pulled us aside to let us know that he is looking for "masses" or possible tumor.  Robertson can no longer walk well and has both eyes involved.
I really have no words this morning....and can't really tolerate hugs or inquiries about how we're doing....not that I don't appreciate them but I am barely keeping myself together right now and I just can't go there.  Actually mostly my brain doesn't want to go anywhere at all right now and I find myself stopping thought processes regularly.
I can say that Heavenly Father answered prayers last night to bring someone to give myself and Robertson a blessing and to bring one of the nicest male nurses who stayed in our room for a long time just calmly talking so that I could quell some of the rising panic and eventually get a little sleep.
I can't stress enough how much I desire and appreciate prayers right now.....my prayers are now filled with desperate pleading.....

June 19, 2012

Sometimes it just keeps coming....

I need to be fast with this update as I have a full day of medical appts for Emily and hopefully Robertson....yes, I know that it makes absolutely no sense but we are having yet another medical scare....

Robertson was playing outside on Saturday and stepped on a bee.  He came in and was very upset and scared because the stinger was still in his foot.  My husband got it out by scraping it with a credit card (he said he had heard that tweezers will squeeze more of the venom out).  After some baking soda and hugs, he seemed to be okay.

Later that evening, I noticed that he had a fever.  It was low grade and no real reason for concern but I wondered if it had anything to do with the sting.

At midnight he stumbled into the hall outside our bedroom and since I was still awake, I went to him and felt of his head.  He was absolutely on fire... I would guess around 103-104 degrees because I just couldn't coax him to keep the thermometer (sloooow moving mercury thermometer was all I could find) in his mouth for any length of time and it was already 102.5.

I gave him some advil and brought him downstairs to sleep near Mary and Emily so I could monitor him better.

The next morning I knew we would not be bringing him to church with a fever so I put a movie on for him and began doing some other chores.  He was talking to one of the other children about seeing double and I looked up at him and noticed that he had his hand over his eye.  I vaguely remembered him mentioning that to me in passing the day before but he sounded more like he was joking or being silly and he hadn't mentioned it again...until now.

I inquired as to why he was covering his eye.  He said that he couldn't see with both eyes open because there was two of everything.   At that point he turned to me and dropped his hand and his left eye went separate from the other eye and seemed to kind of fall to the corner of his eye.  Robertson has never been even slightly cross eyed so this was an immediate and obvious problem....

I called Robert who was en route to church with Mary and Amelia and told him to come home so that we could take Robertson to urgent care.

The doctor there said that he thought it was viral and seemed to only involve one eye.  He did not think that the bee sting was related (and it probably isn't) and that it didn't have anything to do with Emily's recent seizures.  He asked us to follow up with our normal primary care doc the following week.

I called first thing Monday and the doctor squeezed him in.  Robertson was at that point complaining of being "stumbly" when he got up to go to the bathroom.  It was, and still is, hard to tell if it is because of his vision problems or because of his swollen foot from the bee sting or if it is something else.

The doctor did a *very* thorough exam and found that it was not just the one eye but that the other eye was unable to go to the corner or up all of the way as well, which she said was concerning enough that she wanted to do an MRI.  She also made a stat referral to an opthomologist and a neurologist.

The doctor agreed with me at how strange it is for a very healthy family to have two situations like this in such a short time and  is throwing around the idea of a strange virus that may have affected both Emily and Robertson but so far doesn't seem to have much to prove that theory.

So, we're heading out this morning for Emily's EEG and hoping that we will get Robertson in while we are down there since the hospital is an hour away.

The only great news we have right now is that Robert took the day off yesterday to help me take K. to her regularly scheduled appt with a specialist in Oakland and she is doing wonderfully.  They said that her labs look even better than the last time! :)  I was very happy to know that something was going well.....

We appreciate the prayers more than anyone can imagine.  We have had members of our church bringing in meals which has truly helped.   Mary is alone with the other children while I am gone so much and I know she is soooo appreciative to have one less thing to worry about.

I will keep everyone posted....

June 16, 2012

Trying to come up for air

I was up late Thursday night...and Emily was up late Thursday night.  This is not something we can do.

I was busy with discussions about the upcoming and final trip for the twins, our business and how we *have* to get it in full gear, and chatting with my daughter about her upcoming wedding....Emily was relaxed and chatting and playing games on FB.  She hadn't had another seizure all week and we were beginning to let our guard down. 

I finally realized around midnight that she was still up and needed to go to bed.  I reminded her that she wasn't supposed to get over tired and I felt a prompting that I should have stayed downstairs with her.  I disregarded that feeling and kept telling myself that she would be fine as she had been all week.

At 3am, we heard another panicked call from Mary that Emily was seizing again.  We rushed downstairs and I found my sweet baby making an eerie moaning sound and thrashing with no control.  It took her a long time to come back to us mentally.  She looked at me with a blank stare as though I were a complete stranger.  She couldn't remember her name.  She just looked lost.  I stroked her head and asked her if she was okay.  No response.  I continued.  After a time, I asked her if she knew who I was...and, after a pause, in a very slurred voice she said...."mom".  

After another trip to the ER and a visit with the neurologist, she has tentatively (pending further tests) been diagnosed with Juvenile Myoclonic Epilepsy.  We got our prescription, Emily got further blood work, and I took her out to her favorite restaurant for lunch.  We came home, hot and exhausted and Emily immediately laid down on the couch.  

She was just dozing when she had a more conscious type seizure.  This one should have been less scary since she didn't lose consciousness but every part of her lurched and jerked.  She could talk to me but had a peculiar and contradictory happy smile on her face.  I again stroked her hair as she jerked uncontrolled and I was helpless to do anything to get it to stop.

I am truly struggling...I keep hearing comments from those that are relieved about the diagnosis.  And I know I should be too.  And, in fact, I am somewhat relieved to have some answers....and hope for treatment.  After all it is certainly better than a brain tumor...and it is a much more treatable form of epilepsy than some.  

So, why on earth am I upset and dare I say...grieving?   

 I went to bed last night feeling more mentally exhausted than I may have ever been.  And, I hoped that a good night's sleep would cure it and I would wake up ready to charge the day as I normally do.  

Only, I woke up every bit as mentally taxed as I was when I went to bed.  

Maybe there will be a day when I will be more philosophical about it all, more understanding, more appreciative of the normalcy that I will regain.  

For now, I grieve the loss of a "normal" carefree life for my daughter.  I am saddened by the fact that she will likely have to take medicines for most of the rest of her life.  I am frustrated by the side effects that often come with the meds that can make life nearly as miserable as living with the seizures.  I am scared of the addiction that often comes with these drugs, especially the one that her neurologist prescribed to her.  

I am understanding but upset about the fact that when she is older and if she has even one seizure...she will have to wait a year to be able to drive again.  And, that there are many professions that she will no longer have the option of doing.  It makes perfectly good sense but could make the difficulties of being a young adult much more complicated.  

And, what about family and having children?  Many of the meds are incompatible with pregnancy and seizures can be more frequent during that time...and can be harmful to an unborn child.

So, I am worried and I'm grieving and for any of you that have witnessed a loved one having a seizure you will understand when I say that it was truly scary and traumatizing for all of us.

There is a lot going on in our family right now and I'm finding myself resolving to pray and read the scriptures more and lean more into the strength and hope that only comes through God.  For now, I will put one foot in front of the other....


June 13, 2012

Update and prior post-Sending the children to outer space!

Despite the stress our family is currently under (see past post) I am determined to try to keep some sense of normalcy.  Em is still continuing to be super sleepy and not quite herself but we have not had any further seizures yet and will hopefully see a neurologist in the next few days.

In the meantime, we are trying to carry on and I will do so by posting the blog that should have been posted yesterday...luckily it was almost finished so you will likely hear much more levity and enthusiasm than I am currently feeling.  But, we are okay.

Here goes:

 I am continuing in my series of birthday children and will next highlight Robertson.  He turned eight years old on his birthday and is currently undergoing a big change from one of our "little ones" to being a big brother who is helpful and capable of bigger and "older" things! :) 

There are times when he seems to want to stay little and have older people still help him find his clothes and socks.  And other times when he is showing how something works to the twins or reading them a book that he seems to really enjoy the idea of being an older brother. 

So, on this birthday I was aware that his days of fantasy play are beginning to be numbered and I wanted to do something fun and "magic" that he wouldn't forget.

He wanted an alien party so we started off with all of the children decorating spaceship frisbees...

Then it was time to make a rocket headed for space!

Oh!  We also needed an astronaut!

Ready for departure!!!

Everyone was on board and excited!

Unfortunately, the next part was sooo much fun that everyone forgot to take pictures!  LOL!  We put a clip on from you tube to show the launching of our rocket:

We shook the chairs as their rocket launched and they watched the movie with huge eyes!

Once we landed on the alien planet...they were all instructed that there were aliens that needed their help!  They were asked to go and find them because they were trapped....

Everyone was equipped with a space laser gun just in case the captors might be around....

When they emerged from the rocket, (out of under the blankets and chairs) the entire house was dark.  Our trusty astronaut Robertson had to lead everyone to the living room to help find the aliens.  We had glow sticks and glowing rings everywhere with lots of glittery green confetti to light the way but it was still fairly dark.  
Once they rounded the corner, oh no!  Look out!!!!  They were ambushed by squirting glow in the dark silly string that seemed to come out of nowhere!  They all shrieked at first with surprise but then once they saw what it was, they had a great time dodging the silly string (supplied by their teenage sisters) in order to find their own little alien that was counting on them!
I sincerely wish I had the pics of them searching for them but here is what the little cuties looked like!

  Here are some pics of playing once the lights were back on:

After dinner, the children were told that the aliens wanted to be returned home to their own planet.  We made alka seltzer rockets to launch them back to their homes.  I anticipated that the small children might not want to let go of their aliens and planned to switch gears if needed (ie hand them right back to them etc.)  But, guess who had the worst time with it?!?   The oldest two of our younger children...Robertson and Amelia.  It didn't even matter when we explained that we weren't *really* launching them back to another planet and that we would quietly sneak them back to them so that the smaller children could still believe.....

The youngest three were mesmerized by seeing the alka selzer rocket explode and imagining that their little alien was flying back to wherever they came from!

Robertson finally reluctantly agreed to launch his alien.  He was told over and over that the alien really wouldn't go away and we would give it right back...we told him that we were just doing it for fun for the smaller children and that there was still something more that we were going to do...  However, watch his sweet and innocent head look skyward when the lid pops! :)

                                                  Now, it was time for cake and presents!

All of the children were relaxing and eating their cake and assuming that the party was pretty much over....when suddenly, they were told by their excited dad that the aliens were flying over!  The aliens wanted to say thank you for sending them home!  They were told to grab their lasers and wave to them in the air as they flew overhead.....and here is what happened next!

The aliens (with a little help from my husband who was upstairs in the window) sent down a glowing flying package of chocolates (and some non-edible glowing sand...that obviously is non-toxic, oops!)  The children still talk about this!!!  They loved it!!!

 I highly recommend the glowing sand!  I believe it was made by Crayola...very fun!

Here is Robertson with his present from Amelia...she designed a shirt for him using our digital garment printer from our business:
                              Happy Birthday Robertson!!!!!!

June 12, 2012

Emily's seizure

I have recently been praying about whether I should go back to work full time.  A *very* hard decision but one I felt that I needed to look at due to the economy, our finances, and medical insurance woes.  I should also find out this week, the results of a recent interview.  This post describes the answer to my prayer...just certainly not in the way I expected.
Emily-a few weeks ago

I woke up at 6am this morning, hearing Mary's voice ring out in our stairway with an edge to it that would bring any mother to her feet.  My husband was ahead of me but still calling down the stairway about what Mary wanted.  I urged him to just go!

Emily was staying in Mary's room last night because they were staying up late to pack for girl's camp with church.  As soon as I walked into the room and could view Mary's hysteria and Emily's limp body flailed across the bed with hair wildly covering her face....I will admit that there was at least one second of terror that we had already lost her.
Emily and Mary-they have always been close

My husband was soon pushing the phone into my hands and telling me to call 911 as he seemed to be too upset to speak.   I was actually calm....kind of that scary emotionless calm.  Within the next few seconds I determined that she was indeed breathing but not conscious.  I was able to tell the 911 operator our address and that Mary was describing what sounded like a grand mal seizure. 

Mary had woken up about 6am with the bed shaking and was irritated that Sizzles (our dog) had gotten up on the bed and she sat up to shoo her off.  What she saw will likely never be erased from her memory.  Emily was jerking around violently with her arms tightly outstretched and her fingers extended out but curled over at the tips.  She was nearly about to fall and Mary was able to run over to her and gave a good shove to keep her on the bed.  The next moment was when we heard her frantically calling us upstairs.

The 911 operator asked if Emily was beginning to be more conscious...I said that she looked like she had voluntarily moved her head.  She requested that I ask if she knew what her name was.  I did and I got the mumbled and slurred question, "what?"  It was the best "huh, what?" type question I had ever heard....

The first to arrive at our house was our local firefighters...we are so thankful for them!  He was able to get some oxygen on Emily and she was able to answer what her name was.  He asked her how old she was and she answered "15"....well, she is *almost* 15 but not until next month.  She continued to seem a bit more alert.

I noticed that there was blood on the bed from biting her tongue... 

The ambulance arrived.  They informed us that they could only take Emily to the smaller local hospital which tends to have a bad reputation.  I wanted them to take her to the hospital where she and the rest of our family are insured and where the care is so much better. 

Her vitals were now good and she was more alert and talking. 

They again insisted that they could not transport to our hospital. 

I ended up deciding to drive her myself.....I still am not entirely sure that it was a good idea.  The ER doctor later scolded me that it wasn't.  But, I know of stories of deaths that were entirely preventable or caused by the other hospital and just wasn't comfortable. 

So, we started our journey speeding down the road towards the hospital.  Emily was falling asleep and looked grey.  I kept asking her what her birthdate was and asking if she was okay.  She indicated that she felt sick.  She didn't want to talk to me because she was afraid of getting sick.   Luckily I was able to find a bag because the inevitable happened and....it was red.  You can imagine what I thought it was..... but Emily reminded me that she had eaten strawberry sherbet the night before.  I don't think I will enjoy that flavor of ice cream so much anymore.

On down the road we drove and I started to slow down lest I would get pulled over .....and then I realized that for the first time in my life I would truly have welcomed a police officer pulling me over.  They could give us a hospital escort or call 911 and hopefully we would be far enough to get to the "right" hospital.  But, it didn't happen...we kept driving....

I cannot describe the relief I felt when we arrived at the ER....I really and truly can't imagine if my decision to drive her myself had put her at risk.

The ER doctor did bloodwork and it was all normal other than a high blood sugar which was explained to be due to the seizure and something about muscles contracting and releasing sugars into the body.  I was obviously so glad to hear the other results that I couldn't focus much on what all he was saying.

When the doctor came in to give the results of the MRI, he announced with true relief in his voice that it was good news.  He said that it was normal and then admitted that he had prior thought that  Emily probably had a brain tumor.  It was such a mix of emotions.....I appreciated his genuine care for her and yet was traumatized by the mere idea of what it could have been.

He stated that he did, however, think that Emily had epilepsy. 

The doctor said that 50% of folks that have seizures will only have one and nothing else for the rest of their lives.  The unfortunate thing is that Emily recalled a few episodes of waking up and noticing involuntary jerking of her head, hands, and feet.  I don't think I will ever quite understand why she didn't say something to me but she had thought at the time that it was nothing big to worry about since it resolved quickly. 

Emily was given Ativan to temporarily prevent seizures and we were sent home with the instructions to follow up with a neurologist this week and make sure she rested since her prior lack of sleep was likely the reason that the seizure came on.  And, that she was not allowed to operate heavy machinery or *swim*. 

 I am so thankful for our gracious and loving Heavenly Father who did not allow Emily to go to camp.  She was supposed to leave tomorrow....if she had been swimming when having a seizure, we might have lost her.   I can't and won't imagine.....

I told Emily that she and I are going to be buddies! :)  She gets to go with me everywhere for right now until we get some answers. 

So, why on earth am I writing a disjointed blog this late....well, we have decided to camp out in the living room with Em down on the air mattress on the floor.  Mary was too upset to sleep alone with her again, which I completely understand, and I didn't want Emily to be alone.  So, Mary and I...and Robertson(who couldn't fall asleep) are downstairs. 

I am attempting to purge my thoughts for the day and get myself tired enough that I can fall asleep.  I have no idea what we will do tomorrow or tomorrow night but for now all is well.
Emily is beautiful inside and out.  She is also so strong....

And, my prayers were answered...and I will not be going back to work full time.