Christian's Birthday!

Christian's birthday was a huge cause for celebration this year. He has been talking about his Buzz Party since the summer. And thinking forward to his Buzz Party was a big help of getting us through the hospital. And for him to take his medicine. And be brave for his blood work. And everything else.

He has also talked big about last years "Lightening McQueen Birthday When I was Three"- the only Lightening thing of it was his cake- but for the little man, the Cake made the Birthday.

Turning four needed a BUZZ PARTY!

birthday invitations- Christian carried his around for DAYS- and still insists it remains on his bulletin board

I felt mildly pressured to create a fabulous Buzz cake- since I knew that was the most exciting thing for him- My first attempt at fondant- and he Loved it! *happy sigh*


When the guest arrived, first thing was to create individual Space Ranger Utility Belts with their initials.


Throughout the party, there were various tasks to complete so the little Space Rangers could collect special buttons for the belts.

Bowling- knocking down the Zurg Pins

Coloring pictures of Buzz, which we taped around the house to help defeat Zurg
We also played a fun balloon toss game that was somehow incorporated into the Buzz/Zurg theme. :)

In between each activity/task all the boys got in a line and performed the necessary "attention! Show me your muscles! Stand up straight!" routine. Then we marched into the "space station" (laundry room) which was fabulously decked out. Of course there are no pictures. flurb. But the doorway was covered in various colored crepe-paper strands, the washer/dryer and window covered in black fabric and funky psychedelic fabric. The dual multi-colored disco-light balls we spinning and rotating around- trust me. It was awesome. :)


Once everyone was in the Space Station, we shut the door and then worked on charging our new power button. Such a feat was achieved by spinning in circles, counting to 10, blasting off, and pressing the new button to charge it. The kids loved it. :)

While it took tons of energy and was a bit chaotic at times (with out-of-town family visiting plus our basement helpers, the house was packed) it was a total blast. Christian loved it- and seeing his excitement and smiles made everything worth it. Yes, some may say/think we(I) go over-the-top for these little kid birthdays- but honestly- I love it. It doesn't stress me out at all- and it's just a fun outlet for me. And it's fun when the boys talk for months before and after about their party.
Sigh. I love this time of life!

one excited little boy to open some birthday loot! Thanks everybody!

christian was excited about getting fun square plates and RED utensils. Mama made the Space ranger cups (just for the kids- adults got boring ones. :P)

Uncle Nate and Anna (dressed as a little green alien. She played the part well by expertly saying "ooooooo")

Grandma and Papa S drove down for the festivities- Papa demonstrating his mad skillz on the little woody guitar they gave Christian.

Blowing out his 4 candles. Finally!! :D



Happy Birthday, bubbies!! Love you so much and we are so thankful to be your parents! You are the best big brother and the sweetest son.
Happy 4th!

Disneyland Extravaganza of Awesomeness

(I started this post waaaay back the end of aug/early sept before our world fell apart. It was a big special trip that I'm so so SO glad we went on- to have such a great time with our kiddos, to relax and just have a blast- and I wouldn't trade it for anything- especially now, knowing the hell we we were about to go through. )

Aug 9-14th we spent on a MUCH anticipated (...5 years for P and I) trip to Disneyland. We went with my brother, Nate and fam (which conveniently includes 2 of Christian and Channing's best friends- Cannon and Noah. And an awesome big brother. And a fabulous SIL.)

it. was. awesome.

With 3 kids 3 and under in the backseat, we knew we had to make the ride fairly enjoyable. No DVD player, (no CD or tape player, either...) meant other measures had to be taken. I do have to give my kids major credit- they are Awesome travelers. We have driven around long distances (though never this long) since the time Christian was an infant, and we honestly haven't ever really had issues. Yes, blessed.

Anyways- they each have a toy story backpack that they got to fill with a few favorite toys and books. I purchased some knick-nacks and wrapped them in totally classy/upscale wrapping paper (er...newspaper ads..) and passed out a new 'present' every so often.

We stopped in NV for the night- and as we pulled up near a hotel shaped kinda like a castle- Christian so excitedly exclaimed: We're here!!! It's disneyland!!!
oh kid. Just you wait. :D

The first night in NV- unwrapping their special gifts :) I made each boy a matching shirts for each day in the park- buzz, lightening mcqueen, and mickey. super fun. :)

DAY ONE:

Waiting to check-in at the hotel- wearing their matching Buzz Lightyear t-shirts- haven't even stepped into the park, and already the kids are in heaven. :)

Love.

The boys' favorite ride. We rode this like 4 times. :)

DAY TWO:

The pixar parade- one of my most favorite parts! And I don't have the picture (nate? Molly?) but the boys got their picture taken with Lightening mcQueen himself. Christian touched him and it was like he was totally starstruck at meeting and seeing LQ in the FLESH. so stinking cute. :)

Day 3:
We got to enjoy a Character Breakfast at a cute little cafe inside the park. The food was amazing- and we got to see tons of characters: Hook, Fairy Godmother, Chip&Dale, Eeyore, Pooh, Minnie, and a few others- it was awesome. Definitely a favorite part. :)

matchies! :)

I love their concentration, focus, and determination.

anna checking out It's a Small World- another favorite
Anna sleeping perfectly

Christian saying goodbye with Mickey outside our hotel

On the way back, we stopped at the beach (the kids have never been)- the water was frigid, but the sand was awesome. :)






It was such a fabulous trip- the kids were completely awesome, the weather lovely, and the memories treasured.

Till next time!

Christian's Story/ Update

:: I don't actually expect or imagine anyone to read this whole post- it is long and detailed.::


I just received an email from one of my dearest friends asking again about the going-ons with Christian. She lovingly informed me that even though she has asked/written several times, I have failed to really explain.

I realized there are many who have expressed love, concern, and prayers in our behalf, that never really understood what was going on. And I fear we (I) may have come across as ungrateful to all of you by not personally responding, though I truly hope that, under the circumstances, you will be forgiving. :)

So- here is our story. It is long. It is detailed. But I want to remember everything.

Friday morning, Oct. 1st, 2010- Christian came into bed with me to snuggle a bit while daddy got ready for work. Suddenly, eyes wide, he cried out in terror that he was "falling".
"Help! Help me!! I'm falling! I'm falling!!" Then it was "wheee! I'm falling! I'm falling!" in a very strange way.
For a few minutes things were 'off'. I cradled him in my arms, terrified as to what had come over my son. The only thing that came to mind was to sing "I am a child of God" and hold him close.

It passed. Minutes later he was laying by me again and said "Mom, (chuckle) I wasn't falling!"

It was all very, very strange.

He had another 'episode' that same day as he awoke from his nap. He had wet the bed (which never happens), thrown up, and was completely distraught. He couldn't use his legs at all. I carried him to the tub and sat with him on my lap in the bath and washed his little body. The whole time he laid completely still. I was terrified. P came home, helped me get him out of the tub, and we took him to the Doctor. Our regular doctor wasn't in so we saw someone else. By the time we got to the office, Christian could walk okay, and was back to being perky and upbeat.

The doctor chalked it up to having the stomach virus.

I knew that wasn't right. At. all.

Saturday and Sunday were totally uneventful.

Monday he went to the dentist. While he was on the laughing gas, he suddenly acted very (extra) strange/hyper. And then it passed. The assistant said that a few kids respond completely differently to the gas and it hypes them up. That almost made sense, except that it was only for about 3 min that he seemed to act extra strange.

Later monday afternoon, we had swimming lessons with my dear friend and her boy. As Christian went to climb up the ladder and get out of the pool, he suddenly collapsed and could no longer stand or use his legs. He was giggling, saying "wheee!", and just..off. The lifeguard came over to check on things- and then came back with his manual, describing a few of Christian's symptoms and said it looked like a micro-seizure. Conveniently my friend, the swim teacher, was also a nurse. (seriously. Jane-of-all-trades. Very handy friend to have. :) )
She agreed that it was definitely a seizure.

And then life turned completely upside down.

He started falling off chairs, bashing his head on our wood floor. He would fall off the couch. He would collapse suddenly while walking. He was never safe. I had to keep a constant eye on him. His episodes changed- his left side would paralyze completely. It would happen instantly, without warning. And when it was over, he was totally normal.

We got an appointment up at Primary Childrens. I had video-recorded an 'episode' and showed the doctor. While in the office, he had another. The doc said it was definitely some kind of a seizure, but unlike anything he had ever seen. Ever.

We were given a prescription. We administered the pills. Regularly. Was told in a week we should see a drastic improvement. Nothing. Couldn't ever get a hold of the doctor or the assistant. Finally got communication- Assistant shocked that there was no improvement. Upped the dosage.
Nothing.

Seizures increased in frequency. 15+ a day.
Christian's balance worsened. Couldn't Run. Living in fear of seizure.
Seizures changed again- now they frightened him and he was fearful of 'falling'.

Halloween fell amidst all of this. We went as the Peter Pan clan- Christian as Peter, Chan as Michael, Me as Wendy, P as John, and Anna was the perfect Tinker Bell.

It was rainy and wet. The boys napped and we ended up missing the trunk-or-treat (which lasted approx. 7 min). We went out to our friends house and trick-or-treated on their street. Except Christian was stumbling. constantly. And had several seizures. And anna had to be carried. so after about 30 min, we called it quits. (we happened to trick-or-treat at our Dr.'s house- and he recommended going to the ER at PCMC if we couldn't get seen as a last resort. )
Halloween was depressing.

Tried to get another appt. at PCMC. I left a message on the nurses phone line. On a Monday, I finally got through to the schedule-lady. Was told May 3(!!!!!!!) was the earliest we could be seen. We couldn't get on the 'fast track' because we'd already gotten one appointment that way. I was completely and totally beside myself. On the verge of tears, I told her that was completely unacceptable. My son is having 20+ seizures a DAY. The same boy that a MONTH ago was running, kicking a soccer ball with perfect coordination could now hardly walk. The gal told me to leave another message on the nurses line and then they would determine if our situation was 'urgent enough'.

So I did. Now in tears, and with the fierceness of a mother who is watching her young child suffer immensely, I left a message. Telling them we needed to be seen immediately. That this was an incredibly urgent situation. And again, that my perfectly capable, soccer loving boy could barely walk.

I was home alone. Trying to care for my 3 little children. My oldest (not even 4) was deteriorating before my eyes. I felt so, so alone. I was so frustrated. So angry. So hurt. So confused. I prayed desperately to God. Begging for His help. Pleading to feel His hand.

Sobbing in hysterics, I called my father. My son was suffering. He could do nothing any more. How did no one understand the seriousness of the situation??? What was wrong with these people?? My dear dad was furious. My mother was furious. She cried with me on the phone. In fact, she cried with me numerous times.

About 3 hours later, I received a call from a nurse. She told me she agreed it sounded very urgent- and that we could get an appt in about 3 days, but that she recommended we come to the ER at PCMC that evening. She said that by doing so we would for sure be seen by those we needed to see and that Christian would be able to get the care he needed. She said there was a chance they would check us in overnight but she wasn't sure.

So we packed our back and a suitcase for the kids for one night.

After school, we drove up to AF, dropped the kids off to Mom S, with the "possibility of staying overnight".

We checked in to the ER at PCMC- and after Christian had 3 seizures in the ER room alone- (one of which I was able to record on camera for reference to the other doctors)- We were admitted to the neurology dept.

Daddy and son waiting in the ER

Patrick headed back home as he still had to teach the next day, leaving Christian and I in our little hospital room that was to be (unbeknownst to us) our home for the next 2 weeks.
The first night there, the nurses wanted me to push to call button every. time. Christian seized. I had to sleep in the hospital bed with him so I would be aware of his seizures. (He no longer called out during them. In fact, he would hardly breathe. Just clench his mouth and tense up. It was scary.) Each time I pushed the button, about 5 nurses would rush into the room, Flip on the lights, grabbing the oxygen mask and several other various items. After about 7 times of this- and the outcome being exactly the same, they lightened up a bit.

I was also to track the time/duration/symptoms of each seizure.

Simply put, I got no. sleep.

First night at the hospital

Christian was hooked up to IVs, oxygen, and heart rate monitors. If he moved too much, the oxygen monitor would come off and we were subjected to a steady 'BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP" until someone came in and refitted the monitor. This happened about 3-4 times (at least) an hour. Sometimes the nurses would let him be off the oxygen monitor- the boy wanted to move!

during one of 2 very extensive EEG scans.
When he woke up, he HATED the thing on his head. Hated it.

We ended up staying in our room for 2 weeks- seeing the entire team of Neurologists every few days and at least one neurologist 1-2x a day. They pumped my boy full of drugs.
Nothing worked. No improvement. at. all. He was now having 70+ seizures/day.

I would wheel him around in a little wheelchair- just to get out. For a change of scenery.
Christian loved to go see this Spiderman statue on our walks

Cousin Michael came all the way from WA to visit and help. Christian almost 4, michael almost 5. Christian is holding his little Ironing Man toy (thanks N&M) and his Buzz rocketship (thanks Tia)- he carried these with him constantly.

PCMC has a play room on another floor- and we went there several times. Christian would try to walk around and play, but he was so unsteady we tried to get him to just sit and play with some toys. It was a wonderful place- full of toys- and Christian loved it.

Needing help to walk in the playroom

One day I hit a low. My brother and his wife and their 5 kids all came to visit. They brought christian some books and cards. Christian was walking around our room with the boys, and suddenly seized and fell face down on the hard hospital floor. It gave him a bad bloody nose.
Later that evening we went up to the play room. I was trying to follow right behind him with my hand on his back- but again, he seized, fell face front, and got another bloody nose. This time his nose was swollen and bruised.
Broke. My. Heart.

One of several distractions available- this beautiful huge lab/retriever- Christian loved her :)

Eventually, 3 days before we left, the magic combination and dosage of medication was found. His seizure drastically reduced- and in the end we were able to go nearly an entire day with only 2-3 seizures. It was a miracle.

My boy is home now. He's playing on a soccer team. We are totally seize-free. He has to take his medications every morning and night- but he has gotten incredibly good and obedient with it. He comes immediately when we call him to take his medicine.

We witnessed a huge miracle with our boy.

It was a horrific experience. A mother's nightmare. It was totally traumatic for us- for me. Even now, over half a year later, writing this brings such clear images to my mind and crushes my heart yet again. But I'm not sure if I would trade it. The closeness I felt to my Savior during some of the hours of lying in bed with my little boy- the Spirit that was in our room-the testimony I had strengthened that I have a Heavenly Father who knows me, knows my boy, and loves us.

I did feel like I aged immensely. It's amazing how going through something like this helps you put things in perspective. And how silly some of my 'cares' seemed to be. It's good for me to go back and remember- remember how THIS- my boy, my kids, my husband, my family, my God- these are the important things in life.

I am finally ready and able to move on. I will never forget this- nor the love we felt from family and friends who came to visit us and showed us immense support. Huge thanks goes out to Mom S.- who watched Anna and Channing and brought them up to visit. They brought up cupcakes and pizza to celebrate P's birthday (in the hospital).
Huge thanks to my brothers and their families for their visits and gifts. Huge thanks to my sister who drove all the way out from WA to support me during this time.
Thanks to our friends and ward family who held a fast in Christian's behalf.
Thanks to P's schools and principals for being so understanding and supportive. Thank you for the teddy bear. Thank you for the incredibly thoughtful card.
Thanks to my dearly beloved husband. He traveled long hours and many miles during the two weeks to be with us as much as possible. He is the Best daddy. And I fell in love with him all over again seeing the pain in his eyes for his son. He hurt. He hurt a lot but focused on Christian and I instead. I love you, darling.

Thanks for the prayers and love.
Thanks for the hugs.

Thanks.

With Uncle Nate and BFF Cannon- thanks for the visits guys.

Overheard at Our House

Channing and Christian are sitting on my bed. Channing is 'reading' his Bob the Builder book to Christian.

"One day Bob the Builder gave Wendy a big hug. It was a Perfect Day."

The End.


I agree. Hugs make for a perfect day.
:)

Gratitude

NOTE: I wrote this up back during our stay in the hospital. I never got around to posting it, but reading through it again brings such strong emotions to the surface- I wanted to share my testimony of God's love with any who might read this.

*******


I have felt such an overwhelming sense of gratitude during this whole ordeal with Christian. Sunday we attended a very brief sacrament meeting at the hospital. It was an amazing experience.
Upon walking in, I felt such a strong, special spirit there. Only those presiding/conducting/presenting were in Sunday dress. The rest of us were in casual street clothes and hospital gowns. Its likely that very few of the attendees had spent more than 5 min 'prepping' themselves. Some of us hadn't even looked in a mirror for a few days. All of us felt heavy burdens.
We looked exhausted, beaten, needing the uplifting we had faith we would receive. All of us were so concerned, so focused on the little ones we were there for that our personal selves simply faded away. The lucky ones of us had our little ones sitting beside us. Several of us didn't.

As I sat there with my sweet boy, the prelude music played sweet primary songs. I looked around- seeing the remarkable, humble people- I felt privileged to be in their company. A few kids were hooked up to IVs, a few in wheelchairs.

I felt so strongly the purity of children. It was as if the Savior was to be anywhere, he would be here. Here with his younger brothers and sisters. Here with the suffering, the weak.

As I looked around, I wondered at the stories of each person there. What circumstances brought us here together. And I felt strongly that Heavenly Father knows. He knows each of us, what we're going through- and He cares. He cares so much. He knows EACH of us. Individually. Personally. He loves us.

I am full of such tremendous gratitude for my life- this very point of time. While I would not wish the pain and agony on anyone, I am grateful for it. I am grateful for my husband, for his love and support. I am so very, very grateful for his job and for his incredible employers- for their loving understanding- that he is able to take off so much time to come up and be with us.
I am grateful that he loves me, that he is in such pain over our son- because he loves him.

I am grateful for a huge family support system. For a mother in law who, without question is watching Chan and anna- for what was 'possibly going to be an overnighter'- which has now lasted nearly 2 weeks. I am grateful for my parents- their huge concern, their prayers.

I am so, so grateful for a sister who dropped everything and DROVE ALONE with 2 kids from Washington state to be a support to me. Who has come to visit me every day that Patrick has been gone. I am grateful for a sister in Texas who was wanting to do the same.

I am grateful for brothers and their families who have come to visit- to cheer Christian and I. Who are doing their best to love and comfort.

I am grateful for a ward who has united in a fast for our little boy.

I am grateful for so many friends who are letting us know of their love. Who are offering prayers in our behalf.

I am so grateful to be alive now. Today. For the medical and technological advances which have been made that allow my son to be helped.

I am grateful for my Savior. That he died for me. For my baby. That because of Him- because of His love- regardless of how this all turns/ed out- I will have my baby with me forever. I will always be able to be his mama. That one day Christian's body will return to its perfected state. That he will walk again, play again. That he will be completely seizure free- because he will be perfected. As Christ is.

I am grateful especially that God has blessed me to be able to feel gratitude at this time. Things could be so, so much worse. I am grateful for the closeness to heaven that I have been able to experience here in this white, hospital room. For the closeness of my Savior. For his arm around me. Around my boy.

I am grateful.

FAST

Dear friends/family/any other random people that may happen to read this Blog-

We would like to invite anyone/everyone to join us in a special fast on Christian's behalf this Sunday, Nov. 7th.


Our ward had the very special opportunity to fast for a little baby (the grandson of a member of our ward)- as one Priesthood leader stated- it was a "special opportunity to be a part of a miracle"- I love the faith that that shows. And I loved being a part of the miracle of the boy's healing. It was such a special experience, and I felt such a love for this baby that I had never met.

I hope and pray for such a miracle with our own sweet boy.

Update

We took Christian in to the ER at PMCH last night, thanks to them being booked till March 3rd, (yes, March) and "Urgent Needs Only" booked for several days out. Things have gone downhill so much and so fast, with no medications working, that they wanted us to come in immediately.

We were admitted overnight, and P took the drive between "Up North" and Gunnison for the 3rd time in 24 hours. rough. :(

(thanks Mom S for watching our younger babes for us!)

Christian had a really rough night again. He was completely drugged up: dose of Pheno, dose of keppa(?), dose of ativan. Kept having seizures. Much talk with the neurologists and the dr. gal working with us overnight said the neuro was like "what?? He's STILL having them??"....comforting. :/

He's to have another MRI, which they were hoping to do this morning (poor kid hasn't eaten in a long time.- little kids need to fast for 8 hrs prior to and MRI so they can be sedated) BUT, the first MRI opening is for 5pm today. They ppl working with us are going to see if they can get it bumped up at all, so we'll find out about that here in a bit.

Kid is the sweetest, sweetest guy. He's totally exhausted (and drugged up) so he goes back to sleep right after a seizure. He finally was 'seize-free' from about 3:30-7, and I was able to sleep from about 4:10-7, my extent of rest for the night.

A funny thing: he's all dressed in this cute little mini-hospital-getup. It's pretty dang cute. (and brings out the blue in his eyes! :P) He wanted a bag to put some of his treasures in. I told him we needed to wait 'til the nurse came and then he could ask her. So he was kneeling, playing on his bed and would call out in a goofy voice "nuuuuuurse. nuuuuuuurrrrrrse!" It was super cute. The gal sitting at the desk outside our door was quite enamored, told him she wasn't his nurse, but that she would be happy to do anything for him. :)
He got his bag.

They've been really good to us here and I'm so glad we finally took the ER route, were admitted, and have been able to have him monitored so extensively. We'll be meeting with a team of Neurologists and even the Supervisor to the neurologists later. They're set on helping us get things under control and our little guy the help he needs. Yesterday I was quite the wreck, but its really good to be here and to be getting the help we need.

UPDATE: He'll be having an EEG here within the hour (hopefully) and the dr. I just spoke with said we'll be here definitely another night.

hm. Stinky underwear much? :S

So. This is jumbled, gargled, and completely un-worthy of any literary-feelings-of-pride, but its an update. And I haven't slept. In many nights. So there.