Monthly Archives: May 2011

a little family fun

There are some great places here, they even look like home!! (photos of me taken by Little Brother)



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Molly May 2011

Molly is almost 6 month old!!  (Dec 7, 2010).  She is 40 pounds, and looks to be to a good state on hunting.

I have to say, it as hard to get a decent photo of her as either of the boys 🙂








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Big Brother’s Last Day of Pre-School

Big Brother is 5 years, 6 months, 1 week and 4 days old!!  

Big Brother is blessed to have a late birthday (Nov) and thus by age he is not legally required to be enrolled in kindergarten till this upcoming fall (fall of 2011).  Thus, this school year Big Brother has gone to the local district pre-school classroom 3 hours a day, twice a week to meet the Speech Therapist (Miss Emily) and work one-on-one with the classroom teacher Mrs. Cramer.  This classroom time also allowed for peer interaction, his biggest challenge currently with regard to his speech IS peer interaction and being understood by strangers. 

He, and his class of 70 peers, “graduated” from pre-school Tuesday night.   

Looking at these photos I can not believe this is my little tiny, almost blue, 5 pound baby boy.  I remember the fear, the day we were to bring him home, because he weighed exactly 5 pounds, and 5 pounds was of course the bottom weight limit of the pumpkin car seat we had.  I was so worried they weight him again, or refuse to let us take him because of how small he was in the seat. 

He is a big boy now:  46 inches tall (one of the tallest in his class, course one of the oldest too) and a full 41 pounds. 



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Library visit 5.25.11

Library visit today.  My boys are so blessed to have a great library to visit and so much more blessed to have a great and amazing Library Director that loves them and understand them.  Their maturity on library visits has skyrocketed and I am so proud of them.  They both know Miss Annette is approachable and genuinely cares about them and tries to help them, and to listen to them.  I am grateful that this is the foundation of ‘library’ they will have to build on; a feeling of acceptance and enjoyment and an understanding the staff is approachable and is there to help you.

We brought home a couple of old friends

we chose many new books:

(I’ll let you guess the ‘chooser’ of the different books SMILE)

We really love Tiger Can’t Sleep and I’d love to find: Read to Tiger

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Read to Me: Raising Kids who love to READ (review)

Here is my thoughts on:  Read to Me: Raising Kids Who Love to Read 

Another: “nothing new” book that ANY of us could have written it, gladly it only took a hour to read. 

The author did not challenge herself, nor did she add anything to the ‘collective’ thought process about reading and reading kids.   Sadly, she does not challenge the reader / parent either. 

Her over all ‘advice’ — to have kids that love to read, they need to be read to AND given access to things the LIKE to read independently.  REALLY!!!???  I am so glad she authored this book to tell me that, i never ever thought of either of those facts before — such an eye opener!!

I did like this quote on page 21 “Around the time a child reaches junior high school his or her reading ability catches up with listening ability.  But until then, children are better listeners than readers. (written pertaining to reading aloud to older children, and to the level of read-a-loud vs the level of books a child can read alone).  I think this is something we all ‘knew in our hearts’ — but the fact is nice.  However, she offer no cite or foundation for it, again so I might as well say it to you as she write it.

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Painting in a different environment

We took the finger painting outside.  The boys found rocks in the rock garden to hold the paper, they striped to underwear and had at it.

At first we tried paint in containers.  Soon, however, we discovered that it worked better for the boys to choose a color and point to a spot on the paper and Momma’d ‘drip’ some there for little hands to swirl or smush or mix. 

Big Brother was telling stories of what he was painting as he did his pictures, Little brother just got in to the paint.

A great deal of fun was had by all – and the hose took care of the mess on driveway AND children!!!


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Little Brother’s Day 5.23.11

Pretty good day to be Little Brother.

Hose play with his ‘baby’.  Molly loves vater like no other day.

Finger painting too (twince actually, he got to paint alone, then again with Big Brother outside)


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Good day to be a kid here.  Little Brother and I finger painted while Big Brother practiced for preschool gradation.  Then both boys got to finger paint outside this afternoon.  Toss in some hose / water play (and all time perfect activity here) on a sunny and 70’s day and you have pretty much a grand day to be a child.

*giggle giggle* As most of you know I am deep into trying to get big Brother to count to 100 correctly.  It is the ONLY ‘preschool’ goal I had for him that he has not met (and frankly had not checked off 9 months ago).  So I am keep trying to find ways to engage him, I think he’ll master the skill as soon as I can get him to practice it.  Part of our problem I think is the tediousness of counting to 100 – after 20 it is the same and so he gets his 30’s and his 40’s all mixed up.  Today Little Brother wanted a treat and I had a great idea.  I pulled out a bag on chocolate chips and told Big Brother that he could have as many as he counted correctly!  So Little had a vested interest in NOT brothering Big too – since they both get the same serving.  Today we got to 14; he skipped 15 to go to 16, so the chips stopped at 14.  For once he didn’t argue my serving number; I think he kinda saw his role He asked if we could do that again tomorrow. 

Have a folding hanging rack for hanging drip dry clothing on?  I do (got it for diaper covers and other stuff like that).  Best use for it ever…

We are attempting to garden again this year, I say attempting as last year did not go so hot.  Daddy got a tiller this year and the garden spot has been enlarged to 3x the size it was before.  We’ll see.  I hope it grows better the boys made a real effort in the planting and seem a lot more connected to it this year. 

This plant is currently in a glass of water, to see if we can grow new roots.  Little Brother tried to pull it out of the starter cup to plant like Big Brother was successfully doping with Daddy.  He was very upset to break it, but there are many more plants, it was ok.


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Medical Update on Little Brother


We have had concerns about Little Brother’s immunity or immune system and health, on a low level since Little was practically a newbie.  I remember talking to my mom when he was not even crawling yet about how he was sick so much more than my first one had been, and how when he got sick Little took so much longer to recover.  At 12 weeks Little Brother spent a week in the hospital due to RSV; he really never got dangerously ill but he simply got sick and stayed sick so long he wore out and was too tired and was not recovering.  This has remained his pattern.  He gets sick a bit more than Big Brother does (with all the same exposures now, grated as a baby he did have more exposure than Big did at the same age since a child under 2 Big was and only and as a infant under 2 Little had a big brother; but we’ve always been very careful not to go over board with the boys in cold / flu and RSV season, especially after that first winter).  The concern is more than when he gets sick, he is so much sicker than his brother, and sick so much longer.

Starting in Dec of 2010, right after turning 3, his health really became an issue.  He has been sick most of the time since then; I keep track and there is rarely a 10 period without a fever and frequently medical appointments and medications.  He has been treated for double ear infections, strep (more than once) and a sinus infection.  In addition to these ‘documentable’ illnesses he has had several ‘mystery fevers’.  Little Brother will run a fever for 4 to 7 days, frequently as high as 103 to 105 and they do not all respond to fever reducers.  During mystery fevers he has ‘fever symptoms’ such as being lethargic; not wanting food, being clingy and nursing much more than ‘normal’.  However there are no infection symptoms and no notable illness.

Given we have really been struggling with his health since the first of the year, and in agreement with the Pediatrician (Dr Amy Kimball, we love her) we decided to seek more advanced medical advice.

On March 16 Little Brother saw Mhd Louai Manini, M.D. a Pediatric Gastroenterology specialist at Blanks Hosptial Cilincs a GI Specialist at Blanks Children’s Hospital (blog post about it here ).  He did many of the same tests Dr Amy had already run; but did a full Celiac Screen which was negative.  The ending impression he left me with, and the impression I got from his nurse that called me with the final results of the blood and stool labs, that he did not see any real reason to peruse further testing at this point.  I have since requested Little Brother’s records and labs from that visit and the doctor’s charting notes state he told me, and I agreed, the next step was flexible sigmoidodcopy and possible a esophagogastroduodenoscopy.  we did talk about more testing, though he did not really name them or elaborate, that but he said he needed to see the blood and stool tests before taking any direction.  We have, nevertheless not moved on anything since that appointment – not sure how that ball got dropped or who did the dropping (I know what I think).

On April 18 Little Brother saw Dr Amy.  He had seen her a week before and been in good shape, no ear infection, throat not infected and so on, on the 18th he had strep again.  Thus she ordered healthy blood work for him to start assessing his immunity.  The blood draw happened April 27th after 4 days of normal tempers.   Based on the SED rate and other results she referred us to an ENT (Dr. Schultz) and to an Infectious Disease Doctor (DR Castagnini).

 Little Brother’s oh so Medical Day 5.11.11

The day started at the ENT’s.  Dr. Schultz.  His office is a pain, but he is pretty nice.  We’ve seen him twice before and he has never been pushy about tubes in the ears (not that I’d do them on his word alone anyhow).  Little seems to do ok with him; and he does not do ok with every doctor he meets (the dermatologist he almost clawed his way out the window).  After the appt I am finding him, in follow up communication, much less accessible, and much more of a ‘do it my way I do not even need to hear another way discussed’ ego and that truly disappoints me. 

Based on my careful notes since Jan 1 of all Little Brother’s temperatures, behaviors, medical appointments, medications and symptoms; he has been given a provisional diagnose by the ENT of Periodic Fever Syndrome (PFS).  That term or dx is, as I understand it, just a classification or a descriptive term for the facts we already have random unexplained fevers that repeat.  The issues now is to see if they can be resolved, to determine if it is a subcategory of PFS (some of them can be scary), and what – if anything – is necessary for long term care.  Little Brother’s hearing was tested, again, and remains unaffected. 

The decision has been made to remove the tonsils and adenoids.  They are very swollen, even when Little has had a normal temperature for 4 or 5 days in a row (as near to healthy as he gets right now).   Looking in his throat this past week, while “well” it is amazing, to me, he can eat the throat and passage is so swollen and red and raw.  There is a chance, I can’t seem to find what chance that this surgery alone will correct the PFS in and of itself and we’ll have a healthy normal little boy.

Since the decision was agreed to the ENT has been rather unresponsively to my questions, concerns or the suggestions of other doctors involved in Little’s care.  Apparently he likes a nice, neat, standard case that going according to SOP’s; and I do not think that is what we have.

We also saw Dr Castagnini that same day; I was impressed he spent at least 40 minutes with us and really listened.  At first he did not seem to take me too serious about our concerns, but as I started quoting medical tests and results and showed him the notes I had made about Little Brother’s temperatures and so on, he started to listen more and his questions and discussion demonstrated he was paying much more close attention.  He agreed to the ‘working dx’ of PFS.  He told me that any facts or family history I think of to share should be shared, there is no way to know what is relevant or not till you look backwards at the end.  He also said it is better to have too much data that to miss the important pieces because they were thought unimportant. 

His biggest concern is the SED rate, its fluctuation, and the repeated illnesses Little Brother can not seem to over-come.  He ordered a good deal of lab work himself; much of it a triple-repeat (having been done by the ped and the GI doctor within a month).  Another other blood draw was hard on Little Brother (and momma) and the decision has been made NOT to return to the lab in the basement 1212 Pleasant where the Blanks Clinics are.  I understand that is the lab that the Clinics send all their lab needs to, but in two draws there, they have yet to NOT traumatize the child.  The first draw ordered by the GI entailed poking the first arm 3x and digging, then poking the other arm 2x.  This lab draw meant poking the first arm 2x then after drawing some blood “loosing the vein” and having to poke the other arm.  I have left that lab twice now with a 3 year old almost hysterical and in a total panic; he has screamed himself to sleep after each visit.  I am not taking him back to that lab again.  If necessary I’ll insist a lab tech be called over from the actual hospital, someone that has experience with small scared children. 

Tests Ordered by the Infectious Disease Doctor

  • ANA (ordered due to fam history of Fibermalgisa and Rumitartitis)
  • CBCD
  • Occult Stool (3 samples on 3 different days this time, not just one)
  • LDH
  • Complete met profile
  • Bartonella 
  • ESR
  • Uricacid
  • Blood Culture
  • histoplasma AB

relevant results:

  • CMV 1.4 (normal is 0 à 0.5) – the only red flag so far
  • SED 15 (normal 1 à 15)

 Everything else came back as normal or negative.  (again, this was, for example, his 2nd neg Mono test) I should be getting complete lab results in the mail; as I am now collecting them all myself.

The three most recently SED rates are:

  • SED on March 16th  9
  • SED on April 27th 91
  • SED on may 11th  15

CMV elevated on all three dates. 

There are 2 SED rates over 20 from 2010 also but I do not have dates.  Both would have been “ill‘ draws as the three above are the  only ‘healthy’ draws he has had. 

Current understanding: 

He has a Periodic / Persuasive Fever Syndrome.  However that is just a classification (as I understand it) more of a descriptive term – and basically we already knew ‘that’ – random unexplained fevers that repeat.   Biggest red flags: SED / CRV rates.  The hope is May 31 when we have the tonsils and adenoids removed everything will clear up – the fevers will be gone and his immunity will strengthen.

Follow up:

Little Brother, May 31, is to have tonsils and adenoids removed.  This is out-patient and will be accomplish using Coblation technolog; supposedly to reduce damager to tissue, reduce scaring and minimize bleeding. 

a controlled, non-heat driven process — uses radiofrequency energy to excite the electrolytes in a conductive medium, such as saline solution, creating precisely focused plasma. The plasma’s energized particles have sufficient energy to break molecular bond within tissue, causing tissue to dissolve at relatively low temperatures (typically 40°C to 70°C). The result is volumetric removal of target tissue with minimal damage surrounding tissue. Many Coblation devices also are designed to stop blood (hemostasis) and coagulate or seal bleeding vessels. Because radiofrequency current does not pass directly through tissue during the Coblation process, tissue heating is minimal. Most of the heat is consumed in the plasma layer, or in other words, by the ionization process. These ions then bombard tissue in their path, causing molecular bonds to simply break apart and tissue to dissolve this link is a video of the process (thought you’d like that mom). 

The Infectious Disease Doctor is going to put him on Anti-Botics before the surgery, since the ENT refused to because it is not SOP.  The concerns being 1.  the surgery center would refuse him day of event if he has a fever above 99.  2. even if the ENT gets them to agree to allow him (and I don’t see him stepping out to do that, since he likes a nice uniform SOP happening) then there is not way to know if he starts a fever on May 30 or 31, or even 29) if it is an illness starting (and active infection so we’d not want the surgery done) or a mystery fever.  3.  if you can not operate due to mystery fevers, it is nearly impossible to schedule and plan for.  (note Little is now on Anti-B because Big Brother had a positive Strep test May 17, so he’ll remain on medication till after the surgery).

The Infectious disease doctor is going to personally follow up with the GI specialist  (also at Blanks) regarding family history and further testing.  I have to say the ID doctor was much more interested in family history and talking about environmental issues than the GI doctor; the GI doctor did not even ask.  Little does not really show direct signs of GI distress, but there is relevant family background and the inflammation for the SED and CRV scores is coming from some place.  Based on the most recent tests (especially ANA and others) the ID feels it is more likely to be a GI root if it continues after the surgery.  Or, of course, it could, possible, be one of the genetic forms of PFS but I am not ready to research that, or worry about that yet, talk to me in July.  I personally feel it is more likely immune related (and have more questions in that vein for the ID doctor), if the surgery is not the answer, than it is GI; I do not feel it is GI related, but I am glad to leave all that till June or July.  

More links for more information on PFS:


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Practicing Perseverance

Perseverance:  Noun:  steady determination in a course of action, a purpose, a state, etc., especially in spite of difficulties, obstacles, or discouragement.

The race is not always to the swift, but to those who keep on running.  The author maybe unknown, but his reference is.  Ecclesiastes 9:11, “I returned, and saw under the sun, that the race is not to the swift, nor the battle to the strong, neither yet bread to the wise, nor yet riches to men of understanding, nor yet favour to men of skill; but time and chance happeneth to them all.”

My boys are all BOY they tromp in mud, they crash though brush, the splash any puddle the find, they always have an eye out to spot a frog or bug they can capture and bring home.  we have a big creek at  the back of our property but it not suited for exploration and development by the pint sized set.  Daddy and I only take them there together and they do not get to explore it, merely view it.  However we are so blessed to have a prefect small sized creek they can have pretty much free rein over.  It is a connector between two pounds and thus dry some of the year, it is not a picture perfect wide flat creek with a sandy bottom and 4 to 6 inches of cool rippling water like I’d love for it to be, but it ours and while they are not allowed to go alone they pretty much can explore and create to their hearts content.  It is a short field walk from the house, you can see the house and drive; and be seen, the entire time.  It is far enough to be a big deal, but not so far little ones can’t walk home (sometimes with some whining). 

Big Brother is fascinated with trying to make a dam “like the beavers do”.  Furthermore, any reason to climb in and get good and muddy is a good reason for a little boy (especially one of my little boys).  A little rock dam in a small creek his fifth summer, is the first step to the habit of perseverance that could make a break in cancer research. 

Remember in the end:  Saints are sinners who kept on going.  ~Robert Louis Stevenson

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