Do you shop at or know someone who does? Click on the link below, or any Amazon link in this blog, to help us earn Amazon Credit in order to buy therapy equipment! Anything you order off Amazon counts! Please bookmark Madi's link and pass it on... every order helps!

Tuesday, April 15, 2014

Our Mini Vacation in California

This weekend we had so much fun on our mini vacation to California.  The timing wasn't great in light of last week's events and our upcoming trip to Boston, but we had promised the kiddos we would go to Lego Land and had already booked the trip, so we just made it work.  I am so glad that we did!  We left on Friday and just got back today.  It was a quick trip, so we didn't get to spend time with our friends or family there, but it was so nice to get away for a bit! 

We had the most beautiful view from our hotel room.  David's brother got us the friends and family rate at the Hyatt and they put us in a corner room.  Two walls were just solid windows with a view of the bay area and the downtown area.  It was amazing!! 

On Friday we came in just about in time for dinner.  We spent the night walking around Seaport Village.  Saturday we just relaxed, walked the downtown, went to Coronado Island by boat, took a bike ride, and swam.  Sunday we spent the day with one of David's bosses, as well as his family and a few of David's co-workers.  Monday we went to Lego Land, and today (Tuesday) we came home.  I wish we could have stayed longer, but it was so nice!  I worried every single day about how we would deal with seizures on vacation, but thank God Madi didn't have any.  I am so very, very thankful for that!!  Here are some photos from our mini vacation....

The view from our hotel room....

Madi was a happy girl!

Another look out our windows....

Is this amazing or what?!?!?!?

We had some extra-special luggage!!!

On the boat to Coronado Island

What a beautiful view!

Our fun bike ride

The girls flew little fairy kites while we cruised

A random cool statue

We raised up Madi's anti-tippers, and she calls this her "relaxing" position
At Point Loma with one of David's bosses

First stop... Bionicle spinners!

(Madi wouldn't ride but Conner and Ramya loved it!)

The girls loved the planes and rode a few times

The girls LOVED that they could ride the horses independently.  It was HUGE for them!

The girls both went on the roller coaster AND loved it!!  We rode it 3 times!

David and Conner really loved the Star Wars area!


David wouldn't take a serious picture with me, so I told him these were getting posted ;)

The kids thought it was really cool to see the set of the Lego movie

The girls even rode the dino roller coaster!

I'm so glad we could get away, we all really loved it!

Monday, April 7, 2014

Whew, what a crazy 24 hours!!

This last 24 hours has been..... crazy!  An ambulance ride, a day and a 1/2 in the ICU, and we are HOME.  Yeah!!  Here's the big "story" for those of you who have been hearing bits and pieces and are wondering exactly what happened.

Sunday morning at about 7:05 Madi woke up throwing up.  It's always hard with Madi because you never know if she's "just" sick, it's seizure activity and/or she is having shunt issues.  I took her out of the room and in to the family room, and the throwing up continued.  She was tracking my finger fine, answering questions, told me her tummy hurt, etc... but the vomiting continued.  I decided to give her an oral rescue med, just to be on the safe side, because my momma gut said this was more than just sick.  I dissolved one 0.5 tab in her cheek and just held her so I could keep a good eye on her.  It seemed like it was working as the vomiting had stopped (cyclical vomiting is our first seizure sign), but I noticed she was starting to stare off to the right.  Then the vomiting started again.  I gave her another 0.5 tab, called David at Church to tell him I probably needed him home, and just continued to hold her and keep an eye on her.  Again the vomiting subsided and she was responding slightly again, but again she started staring off and the vomiting started again.  I called David again and told him I was calling 911 and needed him home ASAP to be with the other two kids (who thank God were still sleeping!!).  I started the third tab and called 911, as that is our seizure protocol.  David got home, looked at Madi, and said "I'll start packing your hospital bag".  I told him to let the ambulance/firemen in first, as I had just heard them pull up.  Right about that time, Madi started her rhythmic jerking, meaning despite the 3 tabs of rescue med, her seizure was continuing to progress.   They came in and I started giving them the low down.  They said they were not expecting to be coming to our house, as they haven't been here for so long.  I said, "me too!".  The ambulance driver turned out to be someone we know (I went to school with him in High school, our parents are friends, and his son was in Madi's preschool class last year), which was *perfect* since I was in my nightgown and my hair was crazy ;).  They put Madi on oxygen and that helped the rhythmic jerking settle down, but she was still starting off and not responding.  They wanted to take us to Mendy's place, but I told them we would need a shunt series and needed to get to PCH.  They called PCH, and they agreed, so they loaded Madi and I in the ambulance and we were off.

At the hospital Madi was still staring off and not responding, so basically still seizing after all that time.  When she was off oxygen to get switched over, she started rhythmic jerking again, so I asked for oxygen ASAP and that helped again.  The nurse looked at her and yelled, "I need a doctor and IV team NOW".  The IV team was busy, but she said "I don't care, come anyway", so they came quickly.  That's not exactly what you want to hear, though I was glad to be well covered.  They tried to get in IV in her feet first but couldn't get it fast enough and couldn't try to mess around with it, so they just quickly put it in her hand.  They ordered a CT scan, IV medication, and an x-ray.  After the IV medication Madi finally stopped seizing and fell asleep, but then her blood pressure fell.  It wasn't crazy low, but was lower than they liked.  They were worried about it and had the respiratory team following her carefully so they could start the BPAP machine if needed.  They didn't want us to leave for the farther away CT scan machine and x-ray, as they were worried they would have to run her back, so instead x-ray came to us and we went to the close CT machine.  Madi mostly slept during the whole thing, but during the x-ray she woke up very startled looking.  She told me she was scared and she had a bad dream we were in the hospital. I told her it wasn't a dream, that she had a seizure, and we WERE in the hospital, but that I had been there the whole time watching out for her.  After that she kind of came and went, but her blood pressure also started to rise a bit, which was good.  They were still wanting to watch it closely and were also thinking they may need to do continuous EEG monitoring, so they sent us up to the ICU. 

We got all settled in the ICU and talked to the neurologist, Dr. Condie.  We went over all the test results, as well as the events of the last few days, and neither one of us could find a reason for the seizure.  Her urine is nice and clear, her blood levels looked great, she wasn't developing a fever, and she said her tummy felt fine.  He said he wanted to watch her and see if anything developed, so we planned on staying the night.  Madi was taken off of NPO (nothing by mouth) since her shunt was fine, so she was finally able to eat and drink, and she was SO happy about that.  She looked at the nurse, shook her finger at her, and said, GET ME NOODLES!  She's such a sweet and spunky little thing!  The nurse laughed and handed me a menu.  I got Madi all settled food-wise, and then we found a movie to watch.  Later in the day our friend Ian from Church came to visit, followed by my parents, grammy and papa.  My parents watched Madi and I finally got to go get food and water (it was about 3:30 by then).  Salad, coffee, and water, and I was a happy girl!!  Right before they left I ran down and bought a sandwich for later, and Madi was already asking for food again, so I ordered her food.   

The night was a pretty quiet one.  We watched TV and relaxed and Madi, who *wasn't* tired at all, fell asleep during a movie at about 9:00.  The night nurse was wonderful and didn't pester us much at all, though she did come in the room about 3 times, which woke me up.  At 3:00 am, though, one of Madi's leads had come off and her machine started beeping like mad.  I woke up but she was still sleeping, until the nurse had to fix it.  Madi woke up, the nurse started talking to her, and it was all downhill from there.  The room was pretty bright because we weren't allowed to shut the curtain all the way so that the ICU doctor team could see her monitors.  The hospital was loud.  We were right next to a staff door that kept opening and slamming shut, and Madi was just... awake.  We lay there for quite a while trying to sleep, but she wasn't able to go back to bed.  I rocked her next, hoping that would work, but about 45 minutes later, she still wasn't asleep, so we started a movie.  The nurse asked her how she was feeling and she replied, "beautiful!".  Ha!  Finally at about 6:45 am she fell asleep, but only slept about 45 minutes.  She didn't' sleep at all after that.  It was a tiring morning! 

The doctor team came by and I asked what their plan was.  They said that Dr. Condie wasn't in to see his kiddos that morning but that they had reached him by phone and he wanted to up Madi's seizure meds.  They said they wanted to send us down to the regular floor and have us stay another day.  I protested but they weren't really having it.  I figured we were stuck, because I knew Dr. Condie would send us home, but I was told he wasn't coming.  I ordered Madi food and then the nurse said she would watch Madi so I could run and grab some food.  Madi was ok with that, so I grabbed some oatmeal and a coffee to go.  When I came back Madi looked upset :(.  The nurse had to flush her IV and I guess Madi said it hurt.  When she saw me, she started crying, and my heart broke.  I felt so bad for leaving her for those few minutes, and I just held her.  After a minute she told me it didn't hurt any more.  The nurse felt terrible and was trying her best to comfort her.  After eating I started cancelling tomorrow's appointments and then Dr. Condie came by... yeah!!  I was not expecting him and was so glad!  I told him how Madi was doing and we discussed her daily seizure med dosage change.  I told him I'd prefer to go home, since she was back to her normal self, and he agreed.  He said if he kept us, she was more likely to end up getting sick (there are a lot of respiratory bugs going around) and he'd rather send us home too.  Yeah!!  I was SO thankful!  He still had to discuss it with the ICU doctors, but I was so relieved he was on board. 

We watched some more movies, did some crafts, hung out, ordered Madi more food, got a visit from a therapy dog, and waited to hear for sure if we would be discharged.  My friend Kim, who also has a sweet little girl in the PICU right now, brought me "the works" for lunch (pie, tea, a sandwich, and fruit) and I ate again as well.  Yum!  Thank you Kim!  We got news we would be sent home, but were told it would take a few hours to get discharged.  I let David and my mom know, as my mom was watching Ramya and Conner for me, and just kind of hung out.  Pretty soon the discharge orders were in and the nurse started the discharge process.  About an hour later, we were headed home!  YEAH!!

We made it home about 3:30 and then headed over to Elevate coffee shop for a coffee.  David and I were beat!  We enjoyed a coffee, headed home, and just chilled.  Our friends Matt and Kerianne made us dinner, and it was delicious!  It totally hit the spot!  Now we are getting ready to call it a night and are looking forward to a good night's sleep. 

Thank you SO much for all of the prayers, it really means the world to us!  We are so grateful for your love and support, and we are so happy to be back home again!

Saturday, April 5, 2014

Our Super Fun Day at Bumble Bee Ranch with HopeKids

Today was Bumble Bee Ranch with HopeKids, one of our FAVORITE events of the year!  We sadly had to miss last year, and were so excited to get to go this year.  We all had a blast!!  A HUGE "thank you" to Bumble Bee Ranch and HopeKids for putting this on for HopeKids families (P.S.  If you are ever looking for a good organization to support, HopeKids is it!! They bless so many families, and truly care about their kids!).  Here are pictures from our fun day! 

Bull Riding

Hummer Ride

I think Madi loved it ;)

Ramya said it was "awesome"!

Nerf Gun Fun

It was a beautiful day!

Fun with our friends, Alena and Teague

Conner was in Heaven!

Horseback Riding

Face (and hand) Painting

Fun Crafts

Rock climbing... they made it to the top! 

Madi wanted to try too.  She looks scared but really liked it and tried twice.  Ramya didn't want to try.

My girls and I