Andy & Jessica

I probaby don’t write enough about little Levi and Asher.  Since I gave up writing a journal about my boys after I accidentally lost it while traveling around Germany during maternity leave with Levi, the blog is all I really have to record everything fun or significant in their lives. 

Levi is really talking now, but really not as much as his age would warrant. He likes to say things like:

• “Show me.” (meaning “show me” or “I want to show you”)
• “I see Mack” (meaning “I see a semi truck that looks like Mack from the Cars movie and am really excited about it”)
• “I see two Macks” (meaning I see 2 semi trucks that look like Mack from the Cars movie at the same time and am really, really excited about it)
• “Playroom. Car race.” (meaning “I want you to come with me to the playroom and have a car race”)
• “Mommy juice” (meaning I want some of Mommy’s sugar free orange drink)
• “Daddy juice” (meaning he wants Daddy’s fancy Tropicana OJ and not his standard OJ out of a concentrate)
• “Daddy told me” (meaning Daddy just told him something pretty significant, usually that he couldn’t have something or do something)
• “Cars 2” (meaning “I want to watch Cars 2”)
• “Jude mean” (meaning “Jude was mean to me”)
• “Hi Mom” (meaning “I just want to talk and say something that I know you’ll understand”)
• “Oh no” (frequent expression from my middle drama king — at least the boys get this fine quality from me)
• “Levi school” (meaning “I want to do school like Jude”)
• “Mommy buuh” (meaning “I see a bus that looks like Mommy’s bus”)
• “Levi hut” (meaning “I’m going outside and I need my Hut (German for “hat”)
• “Jude wake?”  “Bobo wake?” (meaning “Are Jude and Asher awake?”)
• “Eins, two, three, four, five” (meaning “I can count, but only in a combination of English and German”)
• “Green bar” (meaning “I want a green (apple cinnamon) NutriGrain bar and not a blue one or a red one”)
• “Sanks” (meaning “thanks”) (so sweet that he loves to say thanks and says it without prompting him)
• “I go Jill’s House” (meaning “I want to go to Jill’s House in Bloomington, Indiana)
• “Call Sofi” (meaning he wants to call his friend Sofia from Ukraine — so cute — she’s his first friend other than his brothers)
• “Buy me gold fish” (meaning he thinks we are out of Gold Fish cracker and we need to buy more pronto)

Asher is the cutest little walker, so confident and smug. Andy nailed it the other night when he described Asher as strutting around “like a manager.” He really acts like he owns the place, which I think is so cute, and he is interested in big boy toys and any techie item (like phones, remote controls, the iPad and computer).

Maybe it’s silly but I feel like I won the lottery. Learning that Jude will no longer have to feel anger, frustration and helplessness while being pinned down and stabbed with an IV is just such a relief to me. If you read this someday, little Jude, know that your Mama loves you so much and is fighting for you.

While I was still freshly flying high from the call with the anesthesiologist at Children’s, we got even more exciting news. Levi’s best little friend from Ukraine (Sophia, who we met in Indiana) had some great MRI results today. Her spine is now tumor free. Her 5 cancerous brain tumors are either dead or significantly shrunk from the radiation. It is awesome news and I’m rejoicing with them. Please pray that the chemotherapy Sofia will receive over the next year or so in Cincinnati will be the cure this precious little girl needs.

I’m thrilled.  I had been preparing myself for a battle with Children’s Hospital to get its anesthesia policy changed so that Jude isn’t traumatized while being held down and stabbed with an IV every 4 months for MRIs, but it turns out that no battle will be necessary.  I just have to schedule his appointments with anesthesiologists rather than with intensivists.  I’m a little upset that no one told me about this distinction that makes the difference between no pain and torture, but I suppose it’s better late than never.  Here is an email that lays out the story that I sent to Jude’s oncologist so that hopefully they change how they do the anesthesia for young children.

Hello Dr. Bendel,

I wanted to follow-up with you about anesthesia for Jude’s regular MRIs.  I may not have mentioned it in the past, but Jude has always been traumatized by the sedation at Children’s for the MRIs.  Usually it takes 1 parent and 2 nurses to restrain him while they stab him with the IV or do a blood draw (e.g., prior to the port placement).  He is often a sweaty mess afterwards.  After seeing how great IU did anesthesia, I followed up with Children’s surgery team.  An anesthesiologist  from Children’s just called after reviewing Jude’s records to determine how anesthesia was administered in the past.  For Jude’s regular MRIs, anesthesia has always been scheduled as an outpatient with an intensivist rather than with an anesthesiologist.  Apparently the health care provider makes all the difference.  Anesthesiologists, unlike intensivists, are trained in breathing a kid to sleep (and then starting an IV).  Intensivists only have the ability to do sedation through IV medication (which involves a poke while awake).  So, it sounds like it will not be a problem on the 27th (for port removal / MRI) to have Jude put to sleep with no poke while he is awake which is a huge relief to me (and will be to Jude).  I’m only following up with you because I think it might be helpful for someone at Children’s to consider scheduling regular MRIs for young kids with anesthesiologists instead of intensivists so that the sedation procedure can be less traumatic (or at least laying out the options for the parents since I had no idea there was a non-traumatic alternative). 

 Hope you are well!

 Jessica

Today was somewhat of a big day. 

First, Jude had his neuropsychological evaluation this morning.  The Ph.D. (who is the same guy who tested him a year ago) said that Jude did not perform nearly as well as last year.  Jude kept complaining of fatigue.  In the memory section, Jude would always answer that he remembered nothing.  But, when the Ph.D. pressed him, Jude remembered every detail correctly.  I’m guessing Jude was just being uncooperative and was tired from the virus he’s been fighting and the radiation treatment.  But, I suppose it is possible that he’s really already had a cognitive decline from the brain surgeries and radiation.  I will be watching him closely. 

After the evaluation, we had a telephone conference with the teacher who will be behind the scenes at Jude’s online school.  I’m pretty excited that she’s looking into options for Jude, especially for reading and math where his abilities are several years ahead of kindergarten. 

Then tonight, Jude got his first buzz cut.  He was looking really crazy — the last doctor who saw him said he looked like he had a tonsure tipped on its side.  I’ve never been a big fan of buzz cuts, but it really looks a lot better.  Thanks to Andy for the good suggestion and for doing the hair cut (I used my fabulous (meaning not fabulous) cinematography skills to record the event).  The finished product is below. 

 

Tomorrow Jude officially starts kindergarten.  This would normally be a big day for the parents and kindergartener, but it won’t be for us.  We won’t be sending Jude to a brick and mortar school, although I know he’d love it.  Instead, we’ll be schooling him at home, as we’ve always done.  Jude’s been doing kindergarten activities since he was 3 so we’ll see how this goes.  Most recently we’ve had Jude do his schooling on an online subscription homeschooling website (we have him do about 12 hours a week, including weekends, year round).  I learned recently about the availability of online public schools that start as early as kindergarten and have Jude enrolled in an online Minnesota public school starting tomorrow.  Andy has always been opposed to any “government school” so hopefully it won’t disappoint.  The curriculum arrived and I felt like it was Christmas morning (I know I probably should have been an elementary school teacher).  The history materials look great and I loved seeing all the new books that I’ve never read with Jude.  The math and phonics materials look more appropriate for Levi.  The school touts that advanced learners thrive and that kids can go at their own pace so I hope that is really the case.  I have Jude enrolled in 3 clubs that I’m pretty excited about.  One is Lego Club where they meet online once a month to learn about Legos, build Legos, etc.  Another is Alex’s Lemonade Stand Club that plans and executes lemonade stands to raise money for children with cancer.  They also will learn about cancer and meet children who are battling cancer.  We may have to have Jude sit out the lesson learning about cancer since I still don’t want him to know that he has/had any life threatening condition.   The final club I signed him up for is kindergarten quiz bowl.  That one is more for me than him.  We’ll see if my kid is really as smart as I think he is. 

I’ll have another opportunity to see how smart Jude is tomorrow.  He has a 3 hour neuropsychological evaluation with a Ph.D. tomorrow.  Jude will be administered several different IQ and other tests to see what impact the brain surgery and radiation have had on his cognitive skills (he was previously tested a year ago after his 1st brain surgery).  Hopefully the little guy does well.  We were told that his 2 brain surgeries and radiation treatment could (in combintation and as a worst case scenario) cause his IQ to drop 32 points.  Apparently the IQ drop is because of slower processing, which causes the child to fail to learn something in one year that causes the child to fail to learn something else the next year and so on.  I feel a bit of pressure to challenge Jude cognitively so that that doesn’t happen and may be a bit of a Tiger Mother.  Hopefully he’ll thank me one day.

Our Jumping Jude is done with cancer treatment and is hopefully cured of cancer. We are planning a party to celebrate. Please plan to join us on Saturday, September 15th. We are thinking of 11-3 or so, but we’ll finalize our thoughts later and re-post, with RSVP info so we know what to plan for lunch. There will be lots of fun activities for the kids, including a jumpy castle.

Jude to me this morning, “Why do you never call me my name?” (Good question Love Bug, Juder, Sweetie, Cutie Pie, Buddy, Bud, Bun Bun, Bun, Bean, Stink Bomb (when he’s being a stinker), etc.)

Jude to me this morning after I picked out his clothes for him and he was going to get dressed, “Hey Mom, you need to get out of my room. I need some privacy.” (If only he’d do the same for me.)

Jude was disappointed when he learned that today is a holiday but that it’s not the type of holiday that comes with presents. So, when I was organizing under our stairs and found a multiplication/division game for his Leapster and gave it to him as a Labor Day present he asked, “Can I trade it for something else?”

About his first shower ever tonight, “It’s fun!  Like a big rainstorm!”

While I was quarantined at home with Jude today, Andy was anywhere but home — first at church and then at the Minnesota State Fair with his brother, future sister-in-law and little Levi.  Levi loved getting some good attention and especially enjoyed the bumper boats and the John Deer tractor trike.  Jude’s eyes were not getting better and my mom told me a really scary story about a cousin who almost lost his vision from an eye infection so I was scared right into the ER with Jude and Asher in tow late this evening.  We learned that having a child with only half a head of hair and grabbing a mask and saying he is suspected of having whooping cough gets you to the front of a 25 person ER line.  They wanted him out of that ER so he wouldn’t get the other kids sick.  But, that just got us to a room and then we had a 2 hour wait while Jude enjoyed the movie Spy Kids.  After lots of waiting, the doctor came in.  She told Jude she wanted to put dye in his eyes and he told her he didn’t want dye in his eyes and that she was trying to “trick” him when she asked him to move his arms away from his eyes.  She then needed to get some backup to help me hold him down kicking and screaming while she put in dye in his eyes so she could check for corneal abrasion.  The doctor confirmed corneal abrasion so Jude was prescribed an eye drop to take in both eyes for the next week or so.   Jude said he had thrown the sand up in the air, “not realizing it would go in [his] eye.”  So, Jude has learned a good lesson about the dangers of a sandbox.

“Are all ladybugs ladies?”