Taking the Scenic Route

Sunday April 30, 2006

30th April 2006

Sunday April 30, 2006

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30th April 2006

Sunday April 30, 2006

Sunshine Girl!

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29th April 2006

Saturday April 29, 2006

Zach’s mom is having a 3-way bypass heart surgery on Monday.  She is in the ICU, but doing better right now.  Zach FINALLY got to actually talk to her yesterday, which meant a lot to him.  She tired fairly fast, so it wasn’t a long conversation, but it was good for him to talk to her.  The staff there moved a phone into the room for her so he could call because they don’t have patient phones in there normally.  I am so glad they did that.

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28th April 2006

Friday April 28, 2006

Zora’s 4 month appointment was today.  She is now 12 lbs 2.9oz (5th-10th percentile), 24.5 inches (50th percentile) and her head circumference is 39 cm.  (10th percentile).  She is catching up!  About the only thing she is behind on developmentally at this point is that she doesn’t have a full blown giggle or laugh, although she is cooing, gurgling, squeaking, and making bubbles with her mouth.  She smiles big and has the beginnings of a laugh, but it isn’t there yet.  She is also starting to look like one of those kids that might skip crawling and go to walking.  She strongly prefers to be vertical and has good head control and is gaining a lot of strength and balance for being upright.  (still a bit bobbly, but I can hold her with one hand and she can remain standing for a good 10-20 seconds.

Zane is going to undergo some testing in the near future too.  The dr. talked to the developmental pediatrician (who we have an appointment with in August) to see what tests she thought were appropriate and could be justified to insurance.  He will probably have an MRI and some genetic testing along with a lead test.  He might have a sedated hearing test (if it is more reliable than the one we took…he hasn’t been able to do a tone test, just a general ‘reacts to sounds’ test).  After the allergy appointment, they will see if a colonoscopy would be appropriate too.  All of these will be under light sedation so they would all be coordinated at the same time.  The hospital we have the dental surgery at is not the hospital she usually deals with, but she is going to see if they can do the blood stuff then.  The only thing that doesn’t appear to be covered is a mercury test, but she is going to find out how much out-of-pocket that test would be.  If it shows up elevated she is going to find a specialist to explore the possibility of chelation because she doesn’t have any experience with that and it isn’t something you mess around with.  We would probably have to go to the Children’s Hospital up in KC if that were to happen.

She brought up vaxes, but didn’t get nasty about it.  I do, however, have another stack of reading material.  lol.  I think she can understand why we want to wait a bit to vaccinate Zora until we have a bit more clear of a picture of what is going on with Zane and if his body is handling the byproducts of the vaccines appropriately.  I honestly don’t think vaccines are inherently dangerous, but I do think that not every person’s body handles them correctly.  She pointed out that breastfeeding actually offers Zora quite a bit of protection at this point, so she wasn’t going to worry as much as long as breastfeeding is her main source of nutrition, and she agrees that we can hold off on food for a while since she is obviously thriving on breastmilk alone.

Zane and I both picked up our new glasses today.  It is so nice to have glasses on that haven’t been superglued together, sit square on my face, and have both nosepads on them. lol. The prescription seems a lot better too.  We haven’t been able to get Zane to wear his yet.  We have managed to get them on for brief periods of time, but he wants them off.  I am not sure if it is because they aren’t correct or because he doesn’t want anything touching his face.  The prescription itself was a bit shocking in how strong it was.  It is stronger than mine is.  We will see if we can get a picture of it.

One really cool thing:  When we were leaving the doctor’s office I asked Zane “Do you want to go down the steps, or the elevator?”  instead of just heading the direction he wanted to go, he pointed (shocker #1) and said (shocker #2) “steps”.  He made a choice (hard for him) and verbalized the answer.  I know this seems like a small thing, but for us it is huge!  Go Zane!

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28th April 2006

Friday April 28, 2006

Zach’s mom is going to have bypass surgery in 4 or 5 days.  Naturally, Zach is wishing he could be with her.  Besides being too expensive, it is a bad time in the semester, he is teaching, and Zane is going under anesthesia next Friday.  It is a sucky situation, but that is how it goes sometimes. 

Tomorrow Zach has to put some tranny fluid in the car.  Dad thinks it might be low after the radiator replacement last week.  He bumped it or something.  That might fix the car.  Hopefully it is that simple.  Then Zane and I both pick up our glasses, then on to a dr. appt. for both of the kids. 

The youth director at church is supposed to call us back,  Hopefully they can work with me on getting Zane into the Sunday School program.  They do a Rotation Model Sunday School which I think would be good for Zane.  It sounds like they take the same concept and present it in several different ways over a period of several weeks (if I am understanding it correctly).  It sounds like it would be a lot more successful for him than the style of Sunday School I grew up with.  (more old-fashioned school type learning environment…requires the ability to sit quietly and listen for long stretches which is not something Zane is capable of at this point).  If they can’t work with me, I will call up the Mennonite Church across town and see if they would be able to.  The drive, the price of gas, and our less-than-reliable car would make that more dicey.  Driving (or walking if the weather permits) a mile or so is a whole different thing than driving 20 minutes across town for the Mennonite Church.  We might as well drive out to my home church at that point…it is an hour away, but the service is an hour later and Grandma & Grandpa & a nursery cry room are there. lol. 

I am also waiting on a call back from the Speech Language Hearing Clinic to see if they have additional slots for speech.  There were only 2 available where he is now and the the therapist said she thought he could benefit with more if we can swing it, and that she would want to know so they could work together for a better program for him.  I know that there is a waiting list for the preschool there, but I want to get my name on the list.  A preschool where they are equipped to deal with speech and language issues would be good for him.    I want to homeschool, but at this point I think he needs more socialization with peers to help him with language.  I may look into the Montessori school and see what some of the other preschools can offer too.  I am not sure if we can do the public preschool unless we can get a medical exemption or religious exemption for the vaxes.  There is no way I am giving him the MMR and chicken pox vax just so he can go to school.  If I have to find other solutions, I will.   The chicken pox vax just seems stupid to me, and the MMR is still surrounded by too much controversy over causing and increasing autism in kids.  He has some speech now.  The possibility of him losing what he does have just so I can put him in a public school in a district I don’t really like just seems beyond stupid to me right now.

I wish the preschool they are planning on starting this fall at my home church was starting up this summer.  I plan on spending a lot of time out at the farm this summer anyway (especially since Zach will be at the internship and I am not talented at single parenting at this point) and I am less fearful of him picking up a ton of bad behaviors from the other kids there.  Since he learns by imitation, I am really cautious about who he interacts with on a regular basis.  It has to be a fairly well controlled environment with good supervision.

For right now I will stick with YMCA kid zone and make more effort to meet up with the AP playgroup and the homeschool group.  If that helps, I might just drop the whole idea of preschool other than the specialized one.

I need to get to sleep.  Big day tomorrow. 

 

***edited to add:  The Youth Director called.  The school year is almost over, so he is fine in the nursery for the next 4 weeks, then we can transition him into the “Kid’s Club” over the summer, which is slightly more structured, and then into the Sunday School program in the fall, which is another step up in structure.  His age group is pretty small (3-4 kids), so that should help him too.  If he was a year older, there would be closer to 10-12 kids in his group.  The person who runs the summer program is an experienced elementary school teacher, so they are likely to be accustomed to ASD kiddos.  He has been in the nursery before and, for the most part, did alright.  (When the class was really crowded with the large group of boys that were a year older the room got really loud, but they are in the regular Sunday School program now so it should be better)  *whew*  good news!

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27th April 2006

Thursday April 27, 2006

  • Early morning eye appointment for me, bookended by a child who wanted to nurse and was not very happy.  (my eyes aren’t much worse, but I needed a new prescription.)
  • All. Day. Long.  the car would stall out at nearly every stop light.  Very nerve-wracking.
  • Zach was supposed to go into school early today to talk to a prof. about an internship opportunity.  He called while Zach was napping.  I had to carry a ‘I just got her to sleep and now she is back awake’ child back to the bedroom when he called an hour before he was supposed to go in.  Zach then had a long conversation with him, pacing around the room as he talked.  He was asked if he could stop by his office after class instead of before class.
  • Soon after Zach leaves for classes I get a call from Zach’s aunt.  Zach’s mom had a mild heart attack and is in the hospital.  My anxiety level shoots up.  I can’t believe it, and know that Zach is already really stressed because the decision on his internship is today and Zach HATES dentist appointments and is stressed about the possibility of Zane having dental surgery.   This is going to throw him for a big loop.  I decide to tell him between the speech therapy and the birthday party tonight so he can be at home when I tell him.
  • I had the fun of getting two cranky kids ready for a dentist appointment, trying to time everything so the youngest didn’t lose her mind because I wasn’t holding her every second, and the oldest didn’t get undressed while I tried to get everything together.  I managed to get out of the door on time.  whew!
  • Then I couldn’t find the dentist office on first pass of the googled address.  I wove back through the area through parking lots (remember, the car stalls out every time I stopped…this was fun).  I finally find it, but Zach hasn’t arrived yet.  (he was supposed to meet me there)
  • Filled out a stack of paperwork because Zane is a new patient while trying to balance Zora and keep Zane away from the water fountain in the waiting room.  Get called back and Zach still isn’t’ there. 
  • Zora, thankfully, stopped crying long enough for me to sit on the dentist chair holding Zane so the hygienist can brush his teeth.  He was reasonably cooperative….a rare thing.  He is very, very orally defensive.  He has always been that way…even before teeth he would clamp down on my finger brush and leave my fingers bruised.  He is serious about not letting anything into his mouth, especially toothbrushes.
  • Zach finally finds his way to the office.  (appoinment with prof went long and had problems finding the place too) The dentist comes in shortly after that.  Really neat guy.  (Zach liked him so much he wished the guy saw adults too because he would go to him).  He will need some fillings on his molars.  There is an opening a week from Friday, which is amazing because it usually takes 6 weeks to get a surgery scheduled  with this dentist.  The guy is fine with no mercury fillings.  He still does them if requested, but generally uses stainless steel instead.
  • Zach informs me that the prof made his decision.  He chose Zach.  So, now I can finally talk about what he will be doing this summer (had to keep it under my hat).  Zach is being invited to intern at NASA this summer.  yeah…the space people.  He is going to be working on the alarm systems for the space shuttle (or something like that).  It isn’t really clear what he is doing, frankly, but it is a HUGE honor, as you can imagine.  This is a 10 week paid (although not well paid considering the expenses that he will incur to be there) internship.
  • We get out of the dentist in time to drop off one of the cars at home before the speech therapy appointment so we can all be in one car.  (First had to make it down a main road with two cars following each other , taking turns stalling out.  lol)
  • We have a 15 minute lag and decide it would be better to grab a burger than attempt to go into the apartment and then try to leave again before the appointment.
  • Speech therapy goes well.  I am really having a hard time by now knowing about his mom but not being able to share it quite yet.
  • Get home.  I tell him we need to talk.  He gets a drink, then goes to the bathroom, then changes a diaper, and keeps doing ‘one more thing’ all the while I am trying to get him to come with me out to the porch so we can talk without little ears.  He starts to get the answering machine messages and I suddenly realize what the messages might be and actually yell  “pause it…I need to talk to you BEFORE you get the messages”  He looks startled to say the least and FINALLY follows me outside so I can tell him.  I was glad I stopped him because one of the messages was an update saying his mom had been life-flighted out of the small town hospital to a bigger town hospital. 
  • Spend the next dizzying half hour – forty-five minutes trying to figure out where exactly she is.  We know the town, but didn’t know the hospital.  After calling a bunch of places and dealing with the ‘press 1 for …., press 2….” crap trying to get a human, only to have them connect us with somebody with a similar, but not the same name in a convalescent section of the hospital, we finally find a cell phone number of a family member who might know something.  He does.  He calls us back for a brief update…enough to know she is ok and that we will get a call back soon with more details.
  • Sat around wrapping presents for the birthday party tonight while feeling utterly helpless and distressed while waiting for the call back.
  • While waiting the hair salon we go to for Zane called to say our stylist quit (the only one we have found that can give a good cut to a kid who dives around) and wanting to know if we want to reschedule with somebody else.  Never did a call feel so irrelevant.
  • Finally get a call.  His mom has 99% blockage one place, and mostly clear another place.  They put in a stint and found a big clot and used some clot busting drug to deal with that.  She is in a lot of pain and is now too drugged up for us to be able to talk to her, so we will call tomorrow.  I want to talk to the person who knows what is going on tomorrow because not knowing the exact details (after A & P I actually understand the heart pretty well) is making me a little crazy.
  • Got the mail before leaving for the party.  The speech-language evaluation results are in the mail.  It was long, technical, and pretty depressing.  I don’t really want to talk about it right now, but it looks like they think either PPD-NOS or autism.  Will have to wait for the developmental ped appointment (which I did get moved from Jan. 2007 to Aug 2006) to get an official diagnosis.
  • Go to the birthday party of friends kids.  They have 3 kids in a 1 bedroom apartment and had all the grandparents, aunts and uncles, and some other friends in there.  It was insane, and really difficult for Zane.  He did better once the majority of people left.
  • Finally home.  The kids are in bed.  Our brains are buzzing from such a roller coaster day.  I will upload pictures tomorrow and see if there are any worth posting.  For some reason, I don’t feel like doing that now.  wonder why.

Other than that, it was a boring typical day.

 

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25th April 2006

Tuesday April 25, 2006

Leapfrog love

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Joy personified

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He finally was successful at blowing a bubble on his own, several times in a row!

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A break for cranky baby while watching her brother

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20th April 2006

Thursday April 20, 2006

 

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20th April 2006

Thursday April 20, 2006

WOW!

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18th April 2006

Tuesday April 18, 2006

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  • Zane's age

  • Zane is 15 years, 11 months, and 22 days old
  • Zora's age

  • Zora is 11 years, 11 months, and 26 days old
  • Random Quote

  • Little by little we human beings are confronted with situations that give us more and more clues that we aren’t perfect. — Fred Rogers

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