done with the hospital/ER for a while!

less than three weeks after our trip to the ER with Nolan, we headed there with Avery.  last wednesday Avery was sneezing and had a runny nose.  nothing too crazy.  I ignored it as I usually do.  By Friday I was wondering if I should send her to school but I did anyway.  She made it through school and was fine until Saturday when she started to have some shallow breathing.  We waited it out and she did ok overnight-but by Sunday morning, her quick shallow breaths were accompanied by little moans and we knew it was time to get to the ER. 

We had JUST received her new insurance card (Medi-Cal changed recently and we are on a new health plan through them) and I wasnt sure where they would send us.  I called the advice nurse and she did suggest we take her in. She said we could go to the county hospital, but then said-oh! you can also take her to John Muir.  John Muir is one of the best hospitals in the area so I quickly said that is where we would go.  We woke Nolan up and put the kids in the car in their jammies.  We were seen right away (it was about 6:45am by the time we got there). 
 
poor little sweet girl.  Her pulse/ox level was about 90 when we got there and they said it should be like 98.  So we were right to bring her in.  they did a chest xray right away and started her on a breathing treatment. that helped a ton and you can see she perked up once Gramma got there!

We spent the better part of the day in the ER.  Gramma came to see us.  Red took Nolan home to get dressed and brought coffee and food back.  Once we found out we would be there a while we mentioned to the Dr that we needed some beer-playoff football was on!  He made it clear it was fine with him!  So later, Red went and got some!  Parents of the year! When our nurse saw the beer she said "is that really a beer?" and I said "yes"-she then says "you guys are AWESOME!".  yep.


We had a great ER doc, and the ER pediatrician was fine too.  I liked him until he tried to teach me about Rett syndrome and he was just so off base!  We had fabulous nurses, pulmonary specialists and lab techs.  Getting her IV in was a little rough and asking for "restraints" was strange but other than that it was a good experience. They started her on IV antibiotics and continued breathing treatments.  She wasnt doing well without supplemental oxygen and we were admitted.  Nolan
 was a big help with the breathing treatments. 

Our room on the pediatric floor was really nice.  We were in the brand new wing of the hospital-it almost felt like a hotel-until I pulled out the "guest bed".  Ouch.  I sent Red home at least twice to get me some things and never once thought to have him bring my own pillow!  Huge mistake.  Either way, trying to sleep in a hospital room is no fun-every time I got "comfy", an alarm would sound, or Avery would cough, or she would move, or someone would walk in.  I think I got about 3 hours. 


On Monday morning, Avery's auntie Tara came to see us before her shift started-at 6:30!  And she brought me coffee!  Glorious!  We had great nurses again and continued breathing treatments every 2 hours.  We had no idea what the plan was.  Finally our newly assigned pediatrician came to see us.  He was cool.  He said something that sounded like we might stay ANOTHER night and I must have given him a look-because he quickly said "let's see how she does by this afternoon!".  Once she was awake and had breakfast, she was back to normal.  We got her up and moving, got the IV disconnected-with a small snafu in between: her IV had a clot in it and there was a 5 minute period when we had 3 nurse working on her and she was screaming and I was laying next to her shushing her and telling her it was ok.  But other than that, she was back.  She ran around the room, yelled and grinded and yelled some more.  She was back.  Next thing I know we get on the phone with the new Ped and he says we can go!  Gramma had come and brought me lunch and we waited to get our final papers.  I was so glad to get out of there.  Being in the hospital is like a time warp.  You know the days are passing but for some reason it feels like they all roll into one...or something.  I have a new appreciation for families that spend weeks and months in the hospital with their kids.  Those are super parents.  Those parents are my heroes. 

We got home and got her on her swing.  Mom showered and went to bed early.  Kept her home from school today so we could get some sleep.  I would say its a full recovery. Thanks for all the texts and facebook love! xxoo

emergency!

We thought for sure Nolan would make a trip to the ER before he turned 3, but he waited till two days after christmas (age 3 years 2 months).  Remember that trampoline that Santa brought?  He took a little tumble off of it at around 4:30 on Tuesday the 27th.  He came running to me crying saying he hit his head.  I picked him up and put my hand where he said he hit it....and it was wet.  with blood.  I freaked a little.  Called Red.  Luckily he was 5 minutes away and came right home.  We all piled in the car and took him to the ER.  Red went in with him to get him checked in.  I took the car and Avery to park.  We went in after a while and waited with Nolan while Red went with Avery to get food.  Nolan looked so funny after being seen by triage and was having a good time.  We had pretty much told him he would need stitches or staples and told him both of our own staple stories. (Red had 4 in his head and I had countless after both C-sections).


Then gramma came to wait with us.  We got called back.  We waited some more.  The sweet nurse came in and told us we would have to wait some more because they were very busy.  But, it didnt look anything like the Grey's Anatomy ER!  No one was running!  There were barely any people there! 

So we finally see the Dr and he confirms that he will need staples.  Then he tells Nolan that the novocaine shots will feel like bee stings.  Nolan is still being brave.  He did try to escape a few times saying he was done and his boo boo was healing up. We try to hold him down for the shots but between me and gramma we cant keep him still enough.  The nurse comes in and for a few minutes Nolan SCREAMS bloody murder.  But then the novocaine takes effect and he doesnt even flinch for the staples. 

Red took him today to get his staples out and he didnt even cry!  Got two stickers and was such a champ.  Here he is once he got back with less hardware in his scalp.  A few minutes later he said "mommy, i need a peanut butter cup because I was so brave!"  He got one.

Road Trip!

We were invited up to visit a lovely cabin in Miranda Ca the day after Christmas.  Sarah's (Red's brothers girlfriend) parents, Cathy and Don, have a cabin there right near a beautiful river.  It is about 4 hours away so it was a little nutty of us to try to do this in one day.  But, I wanted to try it.  I wanted to do something that a family with typical kids might do.  So, we got up early, packed up and left with gramma and the kids.  Three stops later, we got there around 11:45am.  What a beautiful location!  We were greeted by four dogs which the kids loved.  We went in and started on some mimosas!  We had a lovely lunch on the deck (homemade tomato soup and homemade pizza), then walked down to the river.  Uncle MT tried out his new fishing waders and showed Nolan how to fish.  Nothing was biting as the river is very low.  Avery had a blast trying to walk into the water and laughing at us as we chased her back from the shore.

We went back up to the cabin and relaxed for a bit before heading to Founders Grove-a beautiful section of Humboldt State Park with the most glorious Redwoods.  It was a little excursion that Ill remember forever.  It is one of those things I would shy away from because of Avery.  Of course, she loved it and was so good.  She enjoyed running through the forest on the soft pine needles, through the fine mist that was making her hair curlier and curlier.  We went inside trees, Nolan climbed on logs and jumped off of them.  I took a million pictures.  It was lovely.  A lovely day with lovely people who all accept Avery for who she is-which is always a gentle reminder for me to do the very same. I love it when that happens.

christmas day 2011

Christmas morning came and Avery was up and ready to go.  Nolan was another story. Too many late nights had tuckered him right out.  We had to wake him up.  I wish I had a picture of his face when we said "Nolan! Wake Up! Santa came!" He was puzzled for a split second, then leapt from the bed and ran into the living room so fast I didnt have a chance to get the camera!  He and Avery both had looks of wonder on their faces.  Nolan checked out the trampoline first, then noticed the plate of cookies and carrots.  He really inspected it! They liked their gifts-I think Nolan's favorite was the M&M's in his stocking!  Glad we didnt buy too many toys!

After we opened presents here we went to gramma's like we always do.  There were more presents there, mimosas, gin fizzes and breakfast.  The kids loved opening more gifts and especially the huge blow up slide gramma and poppa gave them!  They had a blast on it-until some dog poo got in the mix and then it was time to go!

We then went to Red's aunt and uncles for dinner in Danville.  So much fun.  It is my 11th Christmas out here in California and am so lucky to have all these wonderful people to spend it with.  I unfortunately didnt get any photos.  But I assure you we had a blast.  And a delicious meal.

We had to head home and get to bed because we were planning to wake up early the next morning to drive up north to visit with Red's brother's girlfriends parents who have a cabin on a lake!  That will be my next post!

christmas eve 2011

once again we hosted christmas eve here at our house.  its the one thing I can carry on from my childhood.  my parents always hosted christmas eve.  it truly is my favorite night of the year.  We have Red's immediate family over for dinner, a "white elephant" gift game and secret santa gift exchange.  We always have a ton of laughs.  Everyone was in attendance this year (12 adults) and there were 4 kids instead of 3!  Everyone pitched in for food and we had a delicious meal-despite the potato dish being dropped on the street and smashing into a million pieces!

Avery was so good.  Nolan was so wound up.  He put reindeer food out on the lawn and we set out cookies, milk and carrots. He would NOT go to bed! That is until Santa called us to tell us he was here!  Nolan RAN to bed-it was hilarious!  And he was out like a light.  Once we knew he was asleep, Red and his brothers put the trampoline together and I wrapped the rest of the presents.  It was a really fun night and Im so thankful for Red's family!   

crying it out

It's been one of those days where I have been on the verge of tears all day long. And I have a headache from not letting it all flood out.  First it was being in Toys R Us trying to find some presents for the kids for christmas.  Everywhere I looked I saw things for Nolan, but nothing for Avery.  Then I found myself in the barbie/dressup/all things little girls love aisle and had to fight back the tears.  It is hard not to try to imagine what Avery would be asking for if she could ask-or even play with toys.

Then I had good tears when I heard the gender of our beloved sitters baby-It's a GIRL.  But then you know that causes me stress as well.  Im always afraid of that Rett monster showing up in someone elses baby.  I know its silly but, the way it is. 

Then this afternoon, after I heard the news that a young local woman with Rett had been taken off a ventilator after nearly three weeks in a medically induced coma for uncontrolled seizures, had passed away-I read a message her father posted to our online listserv and I just lost it.  But again, had to stifle the cry a bit because I was feeding the kids. 

Plus you can add in all the status updates lately about girls seizing so badly they vomit, turn blue and/or stop breathing.

So I have this headache.  The kind I know too well.  The kind that reminds me Im due for a good curl up and cry session. Kind of feels like the walls are caving in. It's just all a little much.  

Time to cry it out.

working girl

Back in 2006 when it was time for me to start thinking about finding child care for Avery so I could go back to work,  I just couldn't do it.  I remember the day I started looking and just got this feeling that I should stay home with her.  Luckily, we were able to make it work out financially and that was it.  I was done with my full time job-no more paycheck, no more benefits.  After being in the work force for 10 years.  It was weird at first but I have gotten the hang of this stay at home mom thing over the past 5 years.  For a while I worked part time (from home mostly) as a grant writer for a wonderful organization for children and adults with Down syndrome.  I was pregnant with Nolan when I started that job and had to give it up once he was crawling.  But I had gotten the "bug" so to speak.  I knew I wanted to get a job again once the kids were a little older but I really had no clue what I wanted to do.

Enter Rett syndrome and Katie's Clinic.  ( you can read about our very first visit HERE.  )

Shortly after that first visit I got up the nerve to mention to a few key people there that if there was ANY job I could do for them, I would be more than willing and able to do it.  Fast forward about a year and I am asked if I would be willing to take the coordinator position once the current person (the amazing Pat!) retired.  The question hadn't even been fully asked before a resounding YES fell from my lips.  I became an official clinic volunteer shortly after that and over the past 6 months or so have gotten to know the amazing group of people at the clinic.  About two weeks ago, the position was finally posted and I applied.  On Tuesday, I got an email and I am starting next week!  It is a 24 hour a week position for now, but the plan is to increase it a bit in the future.  Ill be taking intakes for new families, scheduling clinic days and coordinating the Natural History Study in March and October.  I will likely also be doing some speaking to schools and some grant writing. 

Im so excited because I know this is a job I can do and do well.  Im nervous to learn all that need to learn in a short period of time-but I know that the team will be there for me and help me out along the way.  Life is going to change a little and I cannot wait to get into a new groove.  I just couldn't be happier-Im going to work for a fantastic clinic at a renowned hospital with incredible people doing game changing stuff for families like ours.  sounds pretty darn perfect to me.