Julia at Eau Claire

What a slacker!

Ted just put a link up on his FB page to our blog--with the 5 year gotcha date for Julia.  Meaning this year will be #9!  Rauan has been home for almost 7 years, Chewie 4.  Where has the time gone?

Well, here's the updates:

Julia:  on the brink of her tween years.  Swings between sweetest angel ever and biggest bitch on wheels ever!  Yes, she is her mother's daughter.  Bone graft complete.  Now we just wait for her adult teeth to come in completely, then braces, then implants.  There is the potential for more surgery, but as we've discussed before, this will be Julia's decision with her support.

Rauan:  1 week away from being 9.  Damn he is a fine boy!  Not that ugly baby we brought home.  Handsome, sweet, loving, with excellent manners.  Still with temper issues, but we had a major break through a couple of weeks ago.  He threw a fit at hockey and Ted just was having trouble dealing with him.  I was home.  Rauan came home and actually came in a talked to me about it.  He actually asked for assistance!  No further temper tantrums in regards to this--he has been much calmer since and, while things aren't always perfect--I see quite the difference.  He has completed his palate expansion and bone graft.  Like Julia he is in a holding pattern.

Alihan/Chewie:  What a difference a year makes!  He was started on Adderall about a year ago.  In December this past year we started him on Adderall at lunchtime.  His IQ has jumped 20 points.  We have final diagnosis of Fetal Alcohol Syndrome.  What does that mean?  Not a whole helluva lot.  We just know what we are dealing with.  He will probably always have concept and control issues.  He'll probably need to receive special education through high school.  So what?  He is currently receiving speech therapy in school and we continue to be blessed with St. Dennis and the support the teachers provide to him.  He is in love with all his teachers--and has a "crush" on his current 1st grade teacher.  He has a affinity with math (yeah!  maybe he can teach me something!).  We have a private tutor for him once a week to work on language and reading skills.  No fear in sports, particularly hockey!  Chewie continues to amaze me with his unconditional love.  For a child that was so badly abused prior to joining our family, he is amazing!  Rauan and Chewie go at it just like "normal" siblings--the funny thing is Rauan gets a temper and Chewie laughs at him--which leads to more of the same.  Its something else.  Heaven help those teeenage years!  He will start palate expansion probably this coming fall.

That's all.  We'll see how it goes and I'll try to update more often.  

Midwest Basic Skills Competition

Neuropsych results

I know some people have been waiting the results.  Well the results are in--and almost a week later I'm still reeling.  I'll wait until I get the written report so I can use the formal/medical terms--but basically, Chewie is functioning as a mildly mentally retarded individual--also as a "non medicated ADHD child"--although he was medicated that day.  So-medication has been changed, per our request.  He's on Adderall now, just a low dose.  We'll see how that goes.  We have a meeting planned with teachers, principal and ourselves to start making arrangements for next year.  I now have more then enough documentation to get Chewie's age changed by a year.  That would certainly improved his test results--low range of normal.  Considering he couldn't hear just over 2 years ago===well, we see what next years' neuropsych results show us!

Badger State games

Julia at the Badger State games.  Not bad for a year off for competitions!

Keeping things normal

One of the most important things to keeping our family going is "normal" and "fun".  Keeping that in mind, I finally had an afternoon free.  Which meant Charlie visited St. Dennis--and loved it!!! and I took the kids sledding.  Ted joined us after work.  By the way--I still don't like the cold and I froze my ass off!  Here's a few photos--not usual quality because it was the i-phone--but you can see the fun.

Syncro practice

Something cheerful--skating

                                        Julia putting her skates on
                                        The girls getting ready to get out on the ice

                                          Warm up

                                          Julia was freezing so one of the older girls wrapped her up in her jacket to       warm her up.

                                           Finally out on the ice

How the Hell do I get out of this soap opera???

If you are ever bored, come join my clan.  Boredom never happens here.  Well, as you know, the MRI originally found a chiari malformation and some enlarged ventricles.  This past week, Chewie went in for a more extensive MRI--to check for a cyst in his spine--and for, what I thought, was just a 24 hours stay with a special monitor in his skull (ICP monitoring)--yes, that does involve drilling a hole in his skull--actually 2--one for going into his head and one for the monitor to go out.  Due to the stress and everything--to prevent burnout, I broke down and told Ted he had to stay overnight.  So, the MRI was late starting.  I left to pick up the kids at school, Ted stayed.  Chewie went to the pediatric ICU after the monitor was placed.  And didn't wake up until 10pm!!  The Badger Hockey players came by and he didn't even wake up for that--I thought he would be pissed--but he was cool with the picture he got and the signed program.  Anyways, once awake he stayed up until 3:30 am.  Ted basically got no sleep because the ICP monitor kept going off--his pressures were going up.  I came back the next am and stayed the day.  The doctor decided to keep him one more day for monitoring.  The final result: hydrocephalus.  Wonderful (said with much sarcasm).  What to do now??  Well, we don't know if that is the cause of the developmental delays.  Due to the fact that he HAS been improving with the ADHD meds and really he isn't having any other symptoms--the initial decision is to wait and do serial neuropsych test to watch for cognitive loss.  Back to fighting with the insurance company for neuropsych.  For some reason I don't think its going to be a problem this time!  So, the monitor came out--and staples went in--and Chewie screamed----loudly.  He's back home now.  I personally am just worn out.  Between Chewie, Julia, Rauan upset because he isn't getting enough attention, a puppy that chews, an absolutely filthy house, and 2 jobs--and not to mention some of the other crap in my family--I'm burnt out.  I want off this soap opera, merry go round, crazy mixed up life.  Whoever said God only gives you what you can take was totally FULL OF SHIT!!! 

So, what now?  We go on.  Decisions are made and we continue to move onward to give Chewie, Rauan and Julia the opportunity to live to their fullest potential. 

Complications

Sunday December 26th Julia developed some fairly significant fevers in addition to her nasty cough.  We were able to bring them down with Tylenol (no ibuprofen with recent surgery) and on Wednesday she went  24 hours without a fever.  Yeah--thought she was on the road to recovery.  NOT!!  Thursday, after our last social work post placement visit, Ted and I took the kids to a movie.  After the movie, Julia coughed so hard she vomited all over the van.  And the fevers came back.  I listened with my stethoscope and thought I heard some crackles--but it cleared quickly.  During the early hours of the 31st, Julia woke up with a severe coughing fit, high temperature, rapid breathing, and some "tugging" when breathing.  Needless to say--momma the pediatric nurse was scared shitless--but was also concerned she was reading too much into it.  So I called my night shift coworkers and asked their opinion.  Its what we would do if one of us had questions with a patient.  All advised to bring her into the ER.  Which I did.  ER doctor heard something that passed in her lungs, saw the increased work of breathing, low pulse oximetry, etc etc.  So, chest xray time--which showed pneumonia.  The ER doctor called it "hospital acquired pneumonia".  So, what does that mean?  The thought is that possibly, during her surgery, she somehow aspirated around her breathing tube.  Rare occurrence--but it does happen.  She did come in with a cough--but her lungs were clear, no fever.  So, who knows?  What caused what?  We'll never know.
So, because mom is anal retentive and a little nuts--Julia was able to come home with her own personal pediatric nurse literally breathing down her neck--and antibiotics.  Its taken a couple of days--but she's rebounding.  Still coughing--which I expect for a week or so.
The bone graft looks good.  Next up--wait and see how it takes and orthodontics.

Christmas Weekend

Made it through Christmas--barely!  Julia managed to blow out a stitch on her bone graft sometime on Christmas Eve day.  Thankfully, I'm in contact with Dr. Del (via facebook no less!) and soft diet--no brushing on the incision area, calm down--no beating on her brothers etc.  We've been doing all that--so not sure what else to do.  Pray?  This am she looks 100% better.  So time will tell if it took.  Geez, only 2 more to do after this!!

Christmas Eve mass, Julia was our swollen Christmas angel--the boys were shepherds again.  I only got pictures of Rauan's butt.  Christmas am--up bright and early.  The kids were in heaven--except Julia was mad--no candy canes or airheads.  I promised her I would save her some.  That calmed her down--for a few minutes.  That Russian temper!!!  After "brunch"  I went back to bed for an hour.  Ted worked at setting up the new computer.  Ted and the boys went out to play pond hockey with the Rottiters--Julia laid on the couch and played with Chewie's new leapster.  The boys came home and we took the wild dogs for a walk.  They were still wild.  Steak for dinner--for us.  Mac N Cheese for the princess.  Today, we are going to my sister's and have little Christmas celebration.  

Bone Graft

Currently at the hospital with Julia.  Bone graft done today and she is gorked.  She had issues last time--so they let her sleep off the anesthesia instead of doing a reversal in the OR--and 10 hours later she is still sleepy.  I'm not complaining---I'm a big believer in sleep.  We had tears starting right in the preop area when she knew she was going back, but luckily one of the ladies in child life--whom I'm lucky enough to work with--knew she was coming and helped prep her(thanks Heather!)  I carried her back to the OR and held her in my arms until she went under.  Yes--that is common practice here at AFCH--I'm proud of my hospital for being a leader in this practice.  Who else better to comfort their child besides the parent??  But I digress.  As always, best nurses, technician, doctors ever!!  Besides the bone graft--which involved taking a little bit of bone from her hip and transferring it to her gumline--she also had tubes placed in her ears.  Her hearing has steadily gone downhill in the past 2 years.  So--time for tubes before it gets worse.  She woke up very nicely in the PACU (thanks Katie!).  We transferred up to P4 and have had great nursing staff--Claude, Sarah and Kristen so far.  IV antibiotics and a full liquid diet.  She loved the tomato soup!  Some nausea and a dose of zofran--great drug!  Visitors today also--Olivia and her mom, Ms. Troia, and then friends of ours, the Freys, sent a balloon and stuffed dog.  We are so blessed to have such wonderful people around us--friends, family, and a wonderful group of coworkers.
So, above is Julia before--modeling her new pedicure and hairstyle--and after.

Another year has almost passed.  How does time pass so quickly?  Next week Julia goes in for her big surgery--the bone graft.  2 surgical sites--one in her mouth the other on the hip (where the bone comes from).  Yes, it is just before Christmas--trust me, I've weighed the pros and cons--but this way Ted and I can keep an eye on her and make sure she doesn't overdo things.  I'm nervous about this one because Julia does understand what is going on.  She asked me how many more surgeries is she going to have to have and I honestly answered--I don't know.  I do know once she reaches full facial growth--around 16 or so--her deviated septum will be fixed.  Beyond that--I think we're going to leave it up to her.  Yes, her lip is still a bit crooked and the nostrils aren't quite perfect--but whose is??  If she wants more done, we'll take care of it--but I'm not going to push anything.  Now orthodontic on the other hand--yes--that's going to be next.  Speaking of which--Rauan is up next for the palate expansion.  Already have the molds done and I'll get the bill the first week of January.  Happy 2011. 
January 12 is the date for Chewie's next procedure.  MRI of his spine with flexion and extension.  Looking for a cyst.  Then to the PICU for ICP monitoring--intra cranial pressure.  Damn--and all I wanted was his age changed.  Nothing simple for the Pritchards. 
Of course in Wisconsin winters give us even more excitement.  Last week--dumbass--also known as Ted, decided to go outside to the van to get his blackberry.  Which wouldn't be so bad except for the fact of a--we just had a nasty snowstorm that started with freezing rain.  b-he was barefoot.  c-it was dark and he went down the front steps--on his ass and side.  Ted said he heard a crack--so he thinks he broke a rib.  I say crack with muscular stress--but what the hell--I'm a nurse with how many years experience--what do I know???  He refused to go to the ER or urgent care--so heating pads, ibuprofen, deep breathing (to prevent pneumonia) and sleeping upright in the chair for the past week.  Pretty much what would be done anyways.  Of course, he continued to not listen to his wife--the nurse--and went and coached hockey.  Which meant being out on skates on the ice.  Not the brightest idea.  I've pretty much given up--except to make sure his life insurance policy is up to date.  Dumbass.  Nothing more to add to that.
I'll keep everyone up to date on Julia's procedure--probably mostly facebook--but I'll put photos up here too.  Work in progress.

How much more?

Today was Chewie's appointment with neurosurgery.  Which was fine because I highly admire this doctor and if we have to do anything with neurosurgery--he is the only one touching my kid!  Anyways, there because of the chiari malformation.  Now here I am thinking he is going to tell me--this in minor, don't worry about it, check back in a year.  Yeah right.  A pediatric nurse should never think about stuff with her kids.  We can judge accurately.  I knew his ventricles were slightly enlarged--but didn't really give it a second thought.  Apparently, I should have--he is concerned.  And he also wants to check for a cyst in Chewie's spinal column.  Excuse my English--but FUCKING A!!!  What the hell else???  Son of a bitch. Can the other shoe stop dropping now???  I think I must have looked like a deer in the headlights.  What this means is another MRI under sedation.  And along with that--24 hours minimum of intra cranial pressure monitoring on Chewie's brain.  Which is the PICU--a place I have worked, but not overly fond of.   Lisa, a friend of mine, is also the nurse working there and sat down and explained alot of this to me.  Thank God--again I was the deer in the headlights going "huh?"  So, Chewie is starting to get this look on his face and I'm thinking--what the hell am I going to say to my new manager--who doesn't really know my situation except I'm the freak that freaked out when her dog died 2 weeks ago (and had alot of shit this past year--yeah--my available time off is next to nil)?  Shit shit shit!!!  So, after I'm done--and told they will call with a date and time for all of this--upstairs I head to talk to my new manager.  Who, thank goodness, is incredibly understanding and wonders why I am concerned about telling her about this?  Then, heading home, Chewie bursts into tears and is scared of the "big machine" (MRI).  Lovely.  So, he is supposed to see the psychiatrist in January.  Guess what--as soon as I know the timing for the MRI--I'm calling and making the appointment for just before that.
And to add to the fun times in my life--our supposedly neutered puppy isn't neutered.  The rescue group was told that the clinic neutered him--but the clinic didn't because he has one testicle that is hiding and they were waiting for it to drop.  Only in the Pritchard family does this crap seem to happen.
Where the hell is my Korbel again???

A New Chapter

We are not a household that can go very long without 2 dogs.  Belle was lonely, I keep looking for Loki--and what the heck?  If we don't have something crazy going on around here--its not the Pritchards.  Please welcome Charlie--a 12 week old Lab.  We believe his is fully lab, not a mix--but its unknown.  Who cares?  He's keeping  us (including "momma" Belle)  jumping.  We start puppy school next week.

Sadness

I lost one of my best friends this week.  10 years ago for my birthday (actually just before), Loki joined our family.  Loki was an approximately 7 month old male Norwegian elkhound who came to us via the rescue.   I got home from work and there he was, barking up a storm in the backyard.  Loki was mine--without any thought or question.  Callie put him into place right away--he knew she was alpha.  I started training with him right away--with Ted as our faithful sidekick.  Won a few awards--and then the infertility shit started.  Would I have made it without my furbabies?  I don't know.  I spent many many days with them at the dogpark--getting exercise and getting my head straight.  Apparently I came out of the pelvic infection surgery crying about how I missed my dogs--little did I know that Loki had apparently lifted his leg and peed on the furance!  I left the hospital and spent the next couple of weeks giving myself IV antibiotics and curled up next to Loki on my bed or on the couch.  Then we left for Russia.  On trip 2 we returned with this little tiny spitfire peanut.  Julia was sitting on my lap when Loki came in and skidded to a stop in front of me wondering what the hell is that thing sitting on mom's lap?  Then that little thing reached out and smacked him right across the face!  Love--true love.  Loki became Julia's love slave from that day on until the day he died--of course it didn't hurt that the object of his affection would throw him food from her high chair.  Men and stomach love!  Callie just rolled her eyes and left the room.
And so it continued through the addition of 2 more human babies--Loki there through it all.  We lost Callie prior to Chewie coming home.  A few months later Belle came home.  He accepted her too.
This is not to say he was without fault.  Our bedroom furniture is situated so he couldn't jump up and scratch the window.  He barked--at the lawn mower, at the snowblower, at people/children outside our fence, when a leaf blowed.  Loki was passive aggressive--he would get pissed--and would literally piss and/or poop on my carpet in the basement.  I am the proud owner of a carpet cleaner because of this.
But, as with anything--we all have faults and that makes us who we are.  Loki never left my side.  And he will never leave my heart.  We will have another puppy to keep Belle company--since elkies are pack animals.  But it won't be an elkhound.  I love elkhounds and someday we will have another.  But not now.  God willing, Belle will be with us another 10 years or more--then we'll consider it.
RIP LOKI
2000-2010

Seriously--where does the time go?

 Chewie finally lost a tooth

Yes, they are goofs.


Well, we finally have some answers on Chewie.  Following our primary doctor's suggestion. Chewie saw a neurologist--who questioned some of his behaviors.  Off to the head shrinks--who decided that yes, mom is probably right and Chewie is a year younger and he is ADHD.  Chewie started on guanfacine--which quite honestly is a fricking miracle drug in my opinion! They chose a non stimulant ADHD med since his prenatal exposure is unknown.  In 3 weeks--huge improvement.  He can concentrate, he can sit, he can follow instructions--he LISTENS and comprehends.  MIRACLE!!!
Next up, due to the questions on his physical exam, MRI.  Of course, sedated--heck I couldn't even stay still for that long.  Chewie was pretty good, until we got into the MRI and they started on the sedation.  Quite clearly through the tears and crying "I hate this place!!"  Yep, Chewie takes after his mom and certainly can express his opinion.  Of course, saying he hates the place I work probably isn't a good thing--but oh well!  That was Wednesday.  On Friday, while I was applying the second coat of sealant to my driveway, I got the news that literally knocked me over.  Chewie has a chiari malformation--basically the "tonsils" of his brain are hanging in his spinal cord.  His is small--but still something that we will follow up with neurosurgery.  There are also some questionable areas in his parietal frontal lobe.  When Ted and I saw the neurologist on Tuesday--she eased my mind.  There is the possibility that this is something progressive--as in his neurological status will start to go downhill.  However, her feeling is this is related to either an infection--which he is recovering from---post trauma--which is healing--or prenatal exposure to drugs.  Do we know?  No.  I personally think it could be both infection and trauma. So, where do we go from here?  Neurosurgery consult on Nov. 17.  Another MRI in a year or so.  We're waiting to hear back from Neuropsych. for an evaluation.  Continue with the head dudes and maybe increase the guanfacine.  Keep plugging away.
In the meantime, Julia broke her arm playing soccer.  Complete break through the ulna.  Of course, we didn't know until 9 days after the break.  She didn't complain of pain or anything--until 7 days later.  Then there was a small bruise and bump.  So, off to the doctor to double check.  He was surprised too.  She's going to have the bone graft done Dec. 22.  Merry Christmas to you Julia.  We decided then since she'll have 2 surgical sites and is going to need to take it easy.  Hell, I'm having hard enough time keeping her from being wild now.  If her arm doesn't heal probably--she'll need a surgical repair on her arm.  Anyways, this will give me the chance to keep her calmed down for a good 10 days.  HA--I'm hopeful if nothing else!
Rauan--start of the palate expansion.  We'll see the orthodontist on Oct. 19 and start the plans for that.  Then we get to start the running back and forth.

In the meantime, Ted and I keep going.  I'm am hoping to start taking night call at HospiceCare.  More money and won't interfere with all the kid's needs.  The day/pm rotation as a pediatric nurse is working out nicely.  Sadly, while I stopped out for a drink with coworkers last Sunday night, someone decided to shoot at our house--well we can't prove it--but got a large hole in my kitchen window--my new Anderson thermopaned casement window!  So, now we wait for a new sash to arrive.  I was all ready to call a realtor and then take a loss on the house--but Ted did some research and this has even happened in some of the super nice neighborhoods in Madison.  I know that it can happen anyplace--even a small "safe" town---but still it pisses me off.
So, that's our current update.  Better--but busier then ever.  Needless to say, I'm tired--but managing.

WOW!

I can't believe how long it has been since I posted anything.  We've been busy.  New work shift for me.  School started.  And many many doctor appointments.  Chewie is now on ADHD medicine--after numerous doctor appointments.  2 psychiatrists agree--he is only 6.  And he lost his first tooth.  Currently scheduled--an MRI under sedation to see if there is scarring from the abuse that he received in the orphanage.  No argument from anyone--without a doubt, the mutual agreement from all the doctors is that Chewie was (emphasis on WAS!) a victim of child abuse.  Now the question is to what extent and how much damage.  Then neuropsych to find out what specific assistance Chewie will need to achieve his full potential.

Rauan started taking guitar lessons, which he loves--so far.  He loves hockey still.  Julia's resumed her figure skating.  And I'm pooped! Stay tuned for more pictures!

Vacation Day 4

On Monday we drove to Split Rock Lighthouse, which was a bit of a drive. Split Rock Lighthouse is currently celebrating its 100th birthday---so needless to say--busy! Not to mention expensive. For the 5 of us, it would have cost around $35 to tour the light house. Like the kids really would be that interested--well Rauan maybe, but not the other 2. So, we hiked the trails and I took pictures from a distance. Hwy. 61 is being rebuilt too--so there was blasting going on while we hiked. Every once in a while we felt quite the vibration shaking through our feet.

That pretty much covered our whole day, except of course to return to our wonderful cabin to enjoy the waves and look at the beautiful full moon.

Vacaation Day 3

So, on Sunday we woke up to a lovely sunny, cool Minnesota summer day. With nothing on our minds, we drove north to Grand Portage National Monument--aka, less then 10 miles from the Canadian border. There we went to an encampment where the children learned about furs, smoking fish, Native American tribal games, and tepees! I think they were grateful for their own modern beds! We then proceeded to the highest waterfall in Minnesota! Isn't it beautiful? After a full day of hiking and exploring, back to the cabin for cooking out and enjoying another night of a full moon over Lake Superior. And a full night sleep for mom--something I haven't had recently!