Thursday, November 8, 2012

We are on vacation in Holland

Several people have been asking for an update for a while now. The reason why there hasn't been one is because basically nothing has changed. We had a phone conference with Dr. Lacchwani on October 10th; Philippe's best option is surgery to remove the malformation, which is over 1/3 of his brain. 

Beyond the obvious hurdle- that brain surgery is a VERY scary thing for any parent to think about, another down-side is that they would have to cut into the motor strip in Philippe's brain, which would make the left side of his body noticeably weaker for the rest of his life: he will most likely not have fine motor function in his hand, and walk with a limp. Despite all that, it's his best shot at life: to learn and understand things, to communicate, to do all the things life has to offer. Most likely, we will do the brain surgery, but right now we just can't make that choice... yet, anyway. 

For now, we are going to enjoy the holidays and pretend like everything is fine. At the end of the year, we'll make our decision. 

Recently a friend gave me a famous piece of literature that I'd like to share:

"Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
 
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Emily Perl Kingsley  1987"

Maybe, someday, we'll make it to Italy. We've even been offered a ticket that might get us there: brain surgery. But right now, we are on vacation. So here we sit, enjoying Holland.

Thursday, September 20, 2012

Fork In The Road


I was taking a much-needed nap. We've had a cold for a few days so we're all cooped up feeling icky and tired. I woke up to my phone buzzing and answered it immediately when I noticed it was from Cleveland. It was Dr. Lachhwani. He hadn't talked to us since we've been home from the hospital and wanted to follow-up and see how Philippe and we are doing. As I told him the medicine has helped slightly (Philippe has had 1 seizure each week, instead of 2 or 3), he looked over the results from all the tests together to get an idea of the "big picture". 

He told me Philippe has a malformation in his right frontal lobe, which no other doctors had noticed in his previous MRI's. He said it's easy for some doctors to miss if they don't look at MRI's everyday or don't know what exactly to look for, but to him it was obvious. So here's where it gets tricky... Philippe will not out-grow seizures; he will continue to have them the rest of his life. We've tried all the "biggest guns" to fight his seizures: the Ketogetnic diet (which works for some patients to *cure* epilepsy, but after 2 years didn't work for Philippe), we've also used Phenobarbital, Keppra, and Topamax, which are some of the most successful anti-seizure medications. Basically, since each of these things haven't completely controlled Philippe's seizures, probably nothing will be able to his whole life. 

Dr. Lacchwani told me the malformation is not just one tiny spot, or even a small area in his brain, but that it's "significant". His best bet for his future is to remove the affected area through surgery. But the affected area also runs along the motor strip, and at this point Philippe's motor skills are "hard-wired"; he is equally strong of both sides of his body. If we do surgery and remove part of the right side of his brain, the left side of his body will be affected, but we're not sure how much. Since his motor skills are developed, his brain will not re-route those functions, so whatever portion of his motor function gets affected would be lost. It's possible he could lose peripheral vision on his left side, lose feeling in parts of his body on the left side, he might not be able to control his hands or use his finger tips for delicate tasks, and if he loses strength in his left leg he might be clumsy or walk with a limp. The up-side to surgery is that by removing the malformation from Philippe's brain it might reduce or eliminate his seizures. It also might help him over-come some of his developmental delays and reach milestones more quickly with less effort. The key is MIGHT. There's no way to know the out-come of surgery without actually doing it. We can keep our sweet, brave, happy little boy exactly the same: giving him medications (that dont really work) and lots of therapy and extra attention. He will most-likely continue learning at his own pace and who knows how far he will go- if he'll ever be able to "catch up" to other kids, if he'll be able to function in school, if he'll be able to talk or even grasp simple concepts. OR we can choose surgery: he might be seizure-free, or he might be worse off than he is now not only mentally but also physically.


This is our fork in the road.

What do you do when you have to choose for someone else? What do you do when every option is just as scary as the other one? How can we possibly make this decision for our baby boy?! But we don't have any other options. Now that we FINALLY have this answer, we HAVE to make a choice. If we do nothing, we're choosing to not do surgery, which is still making a choice that we might look back with regret and think "why didn't we do that", and we will always wonder what if... If we do choose surgery, part of his brain will be taken and we won't have a way to put it back. If something goes wrong, we won't be able to un-do it. Then of course, there's always the fear of him going into surgery and sometime throughout it have the Dr. come out and tell us that our little boy didn't make it. I know you shouldn't think that, but you just can't help but think the worst.

Right now we're waiting for our doctor to meet with the rest of the board of doctors where they will talk about Philippe and discuss what they think we should do. Then he will talk to us again and we'll go from there. Until then, we're crying, praying, and searching for answers. Answers about what to do, and how to find the courage and strength to actually do it. We go to work, we do our chores, and run our errands but there is not one moment that we stop thinking about this. If you see us and we look lost in space, that might be why. It is like we've hit that wall, fell back, got up and wonder how we can get through. 



Jason Mraz
"I Won't Give Up"

Hmmmm ... Hmmmm ... Hmmmm ... Hmmm ...

When I look into your eyes
It's like watching the night sky
Or a beautiful sunrise
There's so much they hold
And just like them old stars
I see that you've come so far
To be right where you are
How old is your soul?


I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up

And when you're needing your space
To do some navigating
I'll be here patiently waiting
To see what you find

'Cause even the stars they burn
Some even fall to the earth
We've got a lot to learn
God knows we're worth it
No, I won't give up

I don't wanna be someone who walks away so easily
I'm here to stay and make the difference that I can make
Our differences they do a lot to teach us how to use
The tools and gifts we got yeah, we got a lot at stake
And in the end, you're still my friend at least we did intend
For us to work we didn't break, we didn't burn
We had to learn how to bend without the world caving in
I had to learn what I've got, and what I'm not
And who I am


I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up
Still looking up.

I won't give up on us! (no I'm not giving up)
God knows I'm tough enough (I am tough, I am loved)
We've got a lot to learn (we're alive, we are loved)
God knows we're worth it (and we're worth it)

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up


Sunday, September 16, 2012

More updates


Lately a lot of people have been asking me if we've heard back from Cleveland or not and how Philippe is doing. So here's an update:

Philippe is on a different medication now called Topamax. It comes in capsules and he takes it in the morning and at night. We had to slowly build him up to the dose that the doctors want, we couldn't start it off at the full strength and right now he is at a level that if the doctors feel like they need to increase his dose they can. This medicine has reduced the number of seizures he has, before he was having 2-3 seizures a week and now he's only had 1 a week so far. My guess is that the doctors will probably increase the dose to try and reduce the seizures.

Also, for the last 3 months he's had some Gastro Intestinal problems, his poopy diapers are similar to what a baby's diaper would be, meaning that it's not a solid piece but it's always very runny and acidic, which frequently causes his bum to be red and irritated, or easily get yeast infections. So we have to change his diaper as soon as we can or else it gets bad and he cries since it burns and hurts. So to be able to address this Philippe got to go see an Allergist, we knew he was allergic to nuts and eggs, but we didn't know which nuts was he specifically allergic too and we wanted to find out if he was eating anything that he was allergic to and we didn't know about. We are still waiting to see a GI doctor, but the appointment is not until October?!?! Can you believe that, they did not have any openings whatsoever for new patients until october?! I'm sorry, but maybe you can help me here because I simply do not understand how it's possible to not have any openings with any of the GI doctors? Are there that many people that need GI attention right now that there's not one slot until almost 2 months away for him to see my son?! What do they do with emergencies, and shouldn't this be taken care of right away, what if within those 2 months that we are waiting for the doctor his condition worsens and causes some permanent damage on his digestive system, even though it could've all been avoided if treated promptly?! This right now is one of my biggest frustrations.

Also, we went and met with his Neurologist here in SLC Primary Children's, and had a talk, mostly to introduce him to Philippe and what his situation is. The sad thing was when we asked him if Philippe's epilepsy is something that he'll grow out of or something that will stick with him throughout the rest of his life... the answer:

Most likely... for the rest of his life.

I was quiet in that office. Many times had I asked myself that question, and many times I had given myself that same answer. But this was the first time that one of the doctors had  been so honest with us. My face was still, but in my mind, I was weeping as I am right now. 

I guess this is one of those things where you just feel so impotent and wish there was something you could do to make it go away, to make it so that he wouldn't ever have to worry about it and not have to be taking medicines his whole life. To make it where he could be able to do whatever he wants in his life. But sometimes that's exactly what you can't do.

Today while at church, I went over to the nursery to check on him and I saw my wife standing outside talking to one of the ladies that help there. As i got closer, I noticed that both of their eyes were teary. Later I asked Candice what happened and she told me this:

"A couple weeks ago Philippe looked into my eyes, and it was like looking into the eyes of an angel. He's a very special boy with such a sweet spirit. I'm so glad that I get to spend time with him because he has blessed my life just being near him."

I'm grateful for my son, he is indeed the sweetest and he's always willing to give you a smile. You bless my life too buddy, everyday! 

Your smiles make my day!


The Latest Milestone

Roll from your tummy. Sit down and hold your self. Crawling. Walking. Running. Talking... All milestones.

You know? It's always been hard to see how other babies would start reaching these milestones and I would turn around and look at my buddy and wonder if maybe tomorrow he would. But he didn't, within a few weeks he started getting behind all the other babies that were born around the same time he was. Soon, those weeks turned into months, months that he was behind in his development, milestones he wasn't reaching but he should've.

Today, Philippe is still reaching milestones and every time he does something new as little as it might be it fills us with happiness and we cheer for him and celebrate! He turns around and looks at us with a big smile on his face and know how proud of him we are, but most of all his smile reflects how proud of himself he is and how happy he is he's learned something new.

Sometimes his milestones can be a new sound, or learning how to point, learning how to wiggle and "dance", or shrug his shoulders; but it's his latest milestone that has touched my heart so much. It took me a while to realize it, but this last week while we were meeting my brother and my sister in law in Vegas for a quick family trip, I saw it and I knew my little Philippe had learned something new. As we walked through malls or streets, he would get sick of being in the stroller, we would pull him out and grab his hand so he could walk by our side. One of those times, we took him out of the stroller, he stood there. My brother extended his hand towards him. Philippe looked up straight at him, and then put his little hand on my brother's. Then he walked with him happily.

It might be silly for some, but it's a big deal for me. It means more than putting his hand on his. It means trusting in someone you love, and if my son is starting to learn how to trust in others and show it to them, it means a lot to me. A WHOLE LOT. I love you buddy!



Marcel.

Friday, August 24, 2012

Philippe's Health Summary


...will I go to Med School and become a neurologist?
No, but I will encourage and support doctors and scientists searching for answers.
And I will keep praying and fighting for a cure!

Through the 8-day EEG we found out that 99% of the time Philippe's brain activity has zero evidence of epilepsy: no "traces", "spikes", or "hints" of seizures. For only a few quick seconds the electrical activity in his brain goes haywire and he has a seizure (it's always right after waking up when the brain is switching from "asleep" to "awake").

His PET scan revealed that there's not 1 specific spot or area, but that his entire brain is not metabolizing sugars properly, in other words it's not functioning as effectively as it should. Some parts are slightly more than others though. 

We already knew he had developmental delays, but now he is offically diagnosed with PDD NOS (it's like Autism's little Sister). 

We are waiting on results from the MRI. 

We are continuing to do DNA (genetic) and metabolic tests, but won't know those results for several months. 

Cleveland Clinic Emotional Journey:

Throughout the whole experience in Cleveland my emotions were dramatically intensified and bipolar. Every tiny little thing made me want to punch someone, hug someone, scream, or cry (or all of the above!). It's SO hard to explain. My new friend Mandalina, who I met last Tuesday with Gabe, after she got home said "You come back so drained in everyway...hard to describe to people unless you've done it! i did it alone and was sooooooo tired i couldnt even think straight when i got home!" 

I agree, every bit. It was tough, I feel depleted, and it is SO hard to explain to the rest of the world, especially to everyone that hasn't experienced having a child with health problems. 

The hardest part was being alone; I always have Marcel to comfort me, help make big and small decisions, listen to all my complaints, and just understand completely how I'm feeling and what I'm thinking without me even saying a word. Of course we texted and talked on the phone a LOT while I was gone. He's such an exceptionally AMAZING and involved father and husband that not having him by my side was TOUGH! This was the first appointment he hasn't been to (other than simple "well child" check-ups) so it was tough on him too.

We've been in and out of hospitals several times, staying anywhere from a few hours to over a week. In Primary's they have a "pediatric neurology" section, but we are usually the only family there with a "seizure kid." 

Until Cleveland, never had we stayed in a section of the hospital devoted 100% to pediatric epilepsy. It was REALLY TOUGH for me! It's really hard to see Philippe have a seizure, but the hardest part is to HEAR it! When his seizures start he makes an awful sound that's like a scream, cry, and a screech all combined, plus it gets cut off a few times while his body seizes. It is the WORST sound in the world! In that one noise you can hear him 'saying' he's scared, confused, in pain, horrified, and NEEDS HELP NOW!!!

Other kids in Cleveland each made their own "seizure sound". They were similar to Philippe's but different, and they're always loud. Even though Philippe only had 1 recorded seizure in the 10 days we were in Cleveland, all day long I heard other kids having seizures, screaming and whaling. The other kids ages ranged from a baby next door to us to a 17-year old across the hall. 

Most days I am pretty tough, and it takes a LOT to wear me down. On day 8, Monday was one of those days that I "just couldn't do it" anymore. A new kid arrived at the hospital. He looked about 7 or 8 years old. They had to put his electrodes on to start his EEG and for 2 hours he was screaming and freaking out like Philippe does when they put his on. For some reason his mom kept his room door open the whole time! Even with our door closed we could still hear him screaming and crying the whole time. For the rest of the day I kept hearing that same little boy along with 2 other boys having a LOT of seizures, making their "seizure sound" followed by setting off the alarm that calls in the nurses, all day long. By the afternoon, even though Philippe was perfectly fine (and even had his EEG electrodes taken off by this time), I was laying on his hospital bed bawling my eyes out for the other children and families around us. In the most excruciatingly painful way possible I understand all that they were going through. I wish I had a way to make all the kids healthy. A way to take away all their suffering and pain. A way to give their families comfort and peace. I am not just fighting for Philippe anymore. I'm fighting for Mandalina and her sons Gabe and Michael, and Joy and Chris and their son Brendan, and Monica's son John, and Sarah and Adam who introduced us to the Cleveland Clinic where they've been taking their son Cole, and every person that has ever had a seizure, and all the families, friends, and neighbors that have been affected by them. 

...will I go to Med School and become a neurologist? No, but I will encourage and support doctors and scientists searching for answers. And I will keep praying and fighting for a cure!

-Candice

*note: anti-convulsants (anti-seizure meds) may suppress seizures, but they are note a cure: if the medication stops the seizures start right back up, if the medication even worked in the first place. 

The Ketogenic diet has worked to *cure* some individuals with seizures, but it's not 100% effective every time or with every person. We did it for 2 years with Philippe; it helped, but didn't stop his seizures. 

Cleveland Clinic: On our way home!


We are heading home!!!




This morning I had just walked in the kitchen when I heard Joy say "hello" then out of nowhere Brendan ran up and gave me the biggest hug! It was awesome!!! I seriously love that kid! 



All week Joy has been asking Philippe to give her "five". He doesn't just hand those out, but today he was giving her "fives" and loving it!



I finished up laundry and packing, got all ready to go, then it was off to the airport! I checked everything except the diaper bag and stroller, we made it through security, then went to sit at our gate to wait :)

All strapped up on his seat in the plane to Charlotte

Ready for her 3rd flight, this time, going home!

With some help from strangers (which I was completely willing to accept this time, instead on automatically saying "no, I'm ok" like I usually do) we got onto the flight. A sweet flight attendant held Belle while I buckled Philippe. The plane had 20 empty seats, so the guy next to us moved to an empty seat. I was not at all offended by that, it gave me more space :) Thankfully, the flight was perfectly boring and we made it to Charlotte!


In Charlotte Belle was sleeping in the stroller so I walked a few steps behind as Philippe run around (close to the stroller, of course!) and entertained everyone to pass the time in our 3-hour layover :)



An hour before the flight I went to the counter and the lady told me the plane was completely full! She said I'd have to sit down and wait. I called Marcel and he started to freak out!

I called our friend that's letting us use the buddy passes and she said there were empty seats, and that we should be fine. The lady at the podium made an announcements for "parties of 2 to come to the podium". A couple came up and I was sitting close enough to hear the lady ask them if they would mind switching seats to the exit row. They agreed. I was hoping she asked them to switch so we could have their seats. A while later she called me up, so I walked over and she handed me our tickets! Two seats together in row 4 :)

We boarded the plane and the guy next to me held Belle while I buckled Philippe. Instead of me thinking "how am I going to do this alone?!" I had the mind set "strangers WILL help me, they don't have a choice". But the guy next to me seemed perfectly happy with holding my beautiful, sweet baby a few times when Philippe needed me for something. 




We made it to salt lake!!! We are SO happy to be home!

Cleveland Clinic: Day 9


Philippe will have to be sedated for the MRI so he couldn't eat or drink anything since last night. This morning the nurse came in at 6am (4am Utah time!) to give Philippe his medicine. The MRI is set for 11am so 6am was as late as we could push it. She asked me "do you think he'll go back to sleep?" I told her "probably not. I think he'll be awake, starving and grumpy all morning" and he was! I played Mickey Mouse Clubhouse for him, gave him lots of toys, took him for our "walk" in the hallway, took him to the playroom, and gave him a shower. There was a lot of biting, screaming, and crying, but we made it through the morning. 

Hiding under the bed
At 10am they told me they were backed up and wanted to move his MRI to the afternoon, which meant Philippe would have to starve all day. I told them "Absolutely not! He's only 3, he HAS to eat!" The head nurse told me they "raised some h_ll! and got them to keep his 11am slot". 

We went to the basement where they have all the big machines and got Philippe in his MRI outfit: awesome blue paper shorts, and a blue gown. 


I went back to the sedation room with him. They used gas this time because he didn't have an IV. Then they threw me out of the room because I didn't want to leave him. They told me they'd call me in an hour when he was in recovery afterwards. 



I went upstairs to rest, eat, and take a shower while I waited. Joy stopped by and said she'd take all my bags to the Ronald McDonald house for me since they had a rental car. 

After his MRI I went to meet Philippe in the recovery room. The anesthesiologist said he had a seizure after the exam (just like after the PET scan). 



I noticed his eye lids were kind of red and purple. They told me they tape down everyone's eyes so they don't dry out and get irritated when they're sedated. That made me sad :(

What made Philippe sad was when he woke up and saw he had the light wrapped around his thumb. He didn't even notice he had a new IV in, but he hates that little light and was trying to pull it and rip it off with his teeth.



I don't know why it bugs him so much. 

After the MRI we were FINALLY done!!! No more appointments, no more EEG, no more IV, no more sedatives, or vitals checks, or being hooked to machines. All we had to do was get discharged ...which for some reason takes hours! The nurse came and gave me all the follow-up instructions, gave me a re-cap of everything that we'd done, and answered all my final questions. Then we sat around waiting... And waiting... And waiting. After 2 hours I asked, "so are we just waiting on his prescriptions?" Then one nurse said "Oh no! We didn't send for his prescriptions!". I asked if I could take them to the pharmacy myself, but she said they couldn't let me leave without them. Then we found out what we had been waiting for was after the nurse had talked to me and answered my questions she forgot to hit the "review" button that sends the file over so we could actually check out of the hospital. Finally at 5 the prescriptions had arrived, the paperwork was done, and we could leave...

So what if we were only going 2 blocks away to the Ronald McDonald house? It was great to be done with the hospital.

We got to the room and while I was feeding Belle Philippe walked over to the door and opened it and walked into the hall. I didn't know he could open that kind of door handle! He doesn't open our bedroom doors at home. Luckily I got him before he got far.



He was hungry so I went to the kitchen where they have "community" snacks on the counter that anyone can have. I grabbed a pastry that looked like it had raisins on it, and gave him a bite really quick because he was freaking out. Right after he'd eaten it I saw it had NUTS, not raisins! He's ALLERGIC! 



I wasn't sure if he'd eaten one or not. Thankfully , Joy and Brendan had walked in the kitchen. I handed Belle to Joy and asked which direction Rite Aid was because I'd heard it was close. She walked over to the window and pointed which direction. I ran upstairs to my room, grabbed my credit card, ran back downstairs, then RAN to Rite Aid 2 blocks away and grabbed some children's Benadryl. The lady at the register wanted to have a conversation!! I'm thinking "lady, did you not see me run in here in flip flops and jeans? Do you see what I'm buying?! I'm in a hurry!" She saw my id and said "oh you're in the Army" Out of breath I said "yes" and handed her my credit card. Then she said "do you like it?" I said "no". Then she proceeds to tell me about some friend/neighbor/relative person who's in the military, but I had grabbed the bag and was already out the door running back! I ran to Philippe and ripped the box open. Of course the outside was wrapped in impossible-to-open plastic! I finally got that off and unscrewed the top, and of course it was sealed with rip-off-proof, puncture-proof foil! UGH!!! Every second my adrenaline, blood pressure, and heart beat are being amplified! I finally got it open and got Philippe to swallow some. I'd been gone from the hospital not even 30 minutes and TWICE I'd needed the "magic button" I press and a nurse magically appears to help me. At this point I was seriously reconsidering having Marcel fly out to help me!

After that I took both kids back up to our room and didn't leave the rest of the night. 



Philippe got a little bored :( But I knew he was totally safe where I could see him. (This time I used the lock at the top of the door so he couldn't open it again).

Cleveland Clinic: Day 8 (Part 2)



The end is near

As soon as we got back into our room one of the techs wheeled in with her cart to adjust Philippe's electrodes. She cut off his head wrap and said "Wow, they all look really bad. I'm going to have to adjust a lot of them, if not all of them. Really, they should probably all come off and be re-done." I was NOT in the mood to hear that. Crystle was gone so I had no one to help me. I didn't have the emotional strength or physical energy, so I just said "Well, we have the MRI tomorrow and they have to come off before that anyway. He probably won't have a seizure tomorrow morning. The EEG was only supposed to be 5 days and it's been 8 days now, so can we just take them off now instead of waiting until tomorrow? We've all just had enough. And they already recorded a seizure, which is all they really need." She called the doctor and the charge nurse. They both came in and looked at his head, which has little sores from the electrodes and all the poking and adjusting. They said it would be ok to stop the EEG and take off all the electrodes. 



Even though I'd been wiping him down all week, Philippe was starting to smell funky. He was so excited to take a shower! He loves baths, but since seizure patients drown if they seize in the bath they don't have a tub. The glue they use for the electrodes is strong stuff! It only comes off with acetone, but since he has little sores all over his head we couldn't use too much. This is what he looks like after his shower:



Brendan is done with his EEG today too so they're checking out of the hospital even though they have some appointments Tuesday and Wednesday (they have different insurance than us; our insurance wants us to stay in the hospital til our appointments are finished). They will be staying at the Ronald McDonald house. It feels lonely and sad to see their empty room across the hall, even though we just met them a few days ago, and they're just 2 blocks from the hospital.  




We've been debating getting Marcel a plane ticket to fly out here just so he can help me fly back home with our kids. We finally decided not to. It would be too expensive if we bought him a ticket ourselves, but since I'm flying standby we might not get on the same flights. And if he flies standby with us, chances aren't great there will be enough empty seats so we might not all end up on the same flights home. Plus he would have to take a couple days off work and we'd be missing out on making money we really need. Bottom line, I'm flying back with my kids alone. I survived getting to Cleveland alone, so I can make it home in one piece with my kiddos :)



Cleveland Clinic: Day 8


Today we had an early breakfast because we have an early appointment with the eye doctor. Optic nerve damage and neurological issues can sometimes be linked, so we have to get Philippe's eyes checked. It's been 2 years, so I guess we're over-due. 

We went to the eye doctor's exam room and the nurse put drops in Philippe's eyes to dilate them. It bugged him a lot :( 



Then she told us to wait in the lobby for 30 minutes and she'll come get us again... 

If you're ever in the mood to be stared at by a lot of people, all you have to do is just hold a sleeping newborn on your shoulder and use your other hand to push a toddler around in a wheel chair. It helps if the toddler is in a hospital gown with his head wrapped in gauze and wires sticking out all connected to a weird plastic box that he carries around like a messenger bag. 

I can tell ya, EVERY person will be looking at you. Works every time. One older lady was chuckling and asked me, "So, what do you do in your spare time?" I told her, "I'm in the Army. That's what I do in my 'spare time' 2 days a month." The lady next to her said "Wow! Well thanks for your service!" Then I said, "The Army is easy! This is the hard stuff: being a mom!"

The nurse came and took us back to the room again and Philippe's eyes were really bothering him. While we were waiting for the eye doctor Philippe curled up on the chair to take a nap :( 



It was so cute and so sad. I wanted to hold him and hug him, but Belle was still asleep on my shoulder, and I can't hold both my kids all the time or my arms would fall off. My shoulder still isn't quite 100% since I dislocated it a few months ago. 

The doctor came in and flashed the light in Philippe's eyes and said "oh, he likes to wiggle." I said, "Yeah, he's 3!" He told me for the exam he uses the metal claws to hold open the eyes to get a good look deep into the back,  so he said we have to see a pediatric ophthalmologist instead, since they're used to little guys that like to wiggle around. I was so bugged!!! We didn't even make this appointment, the nurses just tell us where to go and we just show up. I told him we flew all the way from Utah and our last appointment is tomorrow, could he just look at him since his eyes were already dilated? He said no and told me we'd need to go to the desk and try to make an appointment and hope we get one before we fly back home. This made me even more mad because when you're a patient admitted into the hospital they coordinate all the appointments for you, you don't make your own appointments. 

I went over to the desk to make the appointment, but there were a few people ahead of us that wanted to chat forever. So after 30 minutes (I'm not exaggerating, I timed it because I was that mad!) it was our turn. The girl at the counter had half a brain and said since his eyes were already dilated it'd be dumb to have to leave and come back and dilate his eyes again. So she called the pediatric ophthalmologist who said he would see him. We went to the waiting room, but a new pediatric optholmologist was there for her first day, and their computer system was being updated that day too, so they were really far behind. After sitting there for over an hour, they finally took us back. I held Philippe on my lap while a nurse held Belle a minute. The doctor (who went to the U of U!) had one of those magnifying things on his head that dentists and doctors wear, and he had another magnifying glass in his hand that he held in front of Philippe's eyes and flashed a light into them. He said "His eyes look great. No nerve damage", I was like, "wait a minute, that was it? That was the whole exam?!" He was confused and was like "Yep. That's it". I said "So we don't need to give him anesthesia or use the metal claws or anything like the other doctor said?!" He said, "Nope. Wait, what other doctor?" I told him what happened and he apologized and said the other doctor could have done the exam just as easily he just needed to get a backbone. I WAS FUMING!!! We'd been there for 3 hours! And we'd missed our lunch by now! (And Heaven & Marcel know I get cranky when I don't eat!) I wanted to punch someone, anyone, especially that eye doctor that sent us away! And then punch whoever had made us an appointment with him, instead of a pediatric eye doctor in the first place! 


Tuesday, August 21, 2012

Cleveland Clinic: Day 7


8/19/12


There's a new Dr. that just moved from Mississippi and started working at the Cleveland Clinic, so he's collaborating with our doctor. He came in at 7am and said we're the only people awake on the whole floor. I said "I don't know why. It's only 5am Utah time, and at home Philippe wakes up at 7. Somebody must have told him about the time change." I thought today he'd definitely sleep in since he had a seizure at midnight and when he has them in the morning he always sleeps for 3-4 hours afterwards, but he was up and running around playing with toys as happy as ever. Until the nurse came in to flush his IV, he always hates that. The end part you screw the syringe into popped off! 

The nurses said she'd never EVER seen or heard of that happening before. She tried to put on a new piece at the end, but it didn't work. So she asked the doctor if we need it and they said he can go without an IV until his MRI on Tuesday. So his hand is free and he's happy he can grab things and play with toys better And since his hand isn't all wrapped up and it can fit into his shirt sleeve I can put on his own clothes now! :)

Today Belle met her Grandma!!! My parents drove all the way from Virginia yesterday and got here at midnight and went right to sleep in the Ronald McDonald house. This morning they came over to hangout with us in the hospital. Belle loves her grandma! My mom is seriously the sweetest grandma! She's so patient, and loves her grand babies :)


Philippe had an awesome time with grandpa today too. He even gave him a kiss, which is really, really special! (I've gotten less than 10 from him his whole life!) He kisses Belle all the time also!



Before we came to Cleveland they told us we'd do a 5-day EEG, then have the weekend off, then we'd have an appointment Tuesday, then go home. Well, the plan changed and they added a couple appointments for Monday and Tuesday, and they said since he has appointments that they'd just keep him hooked up to the machines over the weekend. Then if he has another seizure they'll get it recorded. But all week I was looking forward to going to church. There's a church just a few blocks from the hospital we were going to walk to. I had packed our church clothes and everything! Well Brendan's mom, Joy (across the hall from us) told me she called the Missionaries, so they came to give us the sacrament! It was so great!



Afterwards one of the nurses asked me "who were those guys in suits?" I told her "guys from church". She said "oh... I thought they were professional athletes here to see your son. But they saw the people across the hall too, so I was way confused". I laughed and said, "nope. Not athletes. We're LDS. They are too. They're just guys from church we asked to stop by." That was my best on-the-spot, quick explanation. 



After dinner it was time for my parents to drive back to Virginia and steal my sister with them. (ok, ok it's not really "stealing" since she was their daughter before she turned into my free live-in nanny. But Crystle is my little buddy that I love having around. Plus she's AMAZING with my kids! And the biggest help!) It was sad to only see my parents for a day, and to see Crystle go, even though I'll have her back at my house in a week :)



As terrified as I am to be all alone with my kids again, it's nice to be able to have this time with them all in the same room and we just hangout and play (in between doctor appointments and the nurses popping and out all the time). I LOVE my kids and will do anything for them.