All The News That's Fit to Print....and a Boatload of Random Photos to go Along...

Ok, here is my random post to update you on Anna's health stuff (and Ben I guess), and just the random goings ons.

This past weekend Claudio and I attended the IHM conference in Northern Virginia.  This is the first year my husband's publishing company, Arx Publishing, was invited to be a vendor.  This conference is the largest Catholic Home School Conference in this region...so this was very good news for Arx.

Ben enjoying the mini bathtub in my dad's RV

My dad and stepmom bravely offered to babysit Ben and Anna while we attended the conference.....This is a big deal with Anna's tube feedings and pump to contend with overnight.  Plus both kids came down with a cold right before leaving for Virginia!

My parents had a short camping trip planned and so the kids went along on the camping trip in the RV!

look at my shiner!!

While camping Benjamin had an unfortunate run in with a wooden picnic table.  He fell right into the edge and got himself a whopper of a bruise on his cheek and a pretty fantastic black eye.  Definitely could have been a lot worse!

The conference went really well for Arx and they had great sales and made great contacts.  We had an ideal location for our table which definitely didn't hurt!

And I was able to pick up some books,  CDs, and DVDs for the kids that we will mostly save for birthdays and Christmas.

Benjamin is scheduled to have his Feeding/Swallowing Team evaluation this week at CHOP.  I will be really interested in what they have to say.  And to be honest I am hoping they do not recommend the 4week Day Hospital program that Anna will be doing. Just seems far more intense than what he needs.  I am hoping for something along the lines of once a week behavioral therapy at their NJ office.

At his last weigh in he had gained TWO pounds in a month!!  This was with us giving him 3 Boost shakes a day.   So clearly the boy is CAPABLE of gaining weight.  He was 28lbs.

having a lot of fun at the playground at the campsite

Annabella is doing well with her Gtube.  It has not at all helped with her volume intolerance issues.  We still can not get her above 29mls/hr overnight.  Also we are having some trouble keeping the stoma site healthy looking.  She has her first occurrence of granulation tissue that we are treating.  She has her surgical follow up in a week and hopefully they will give us some advice.  We were told that the key to a healthy stoma is keeping it dry.  Well  with the heat and kiddie pool play I am finding this very hard to do in the summer...with just the sweatyness alone!

Anna also had her re-evaluation with the Feeding/Swallowing team at CHOP to see if she would be admitted to their 4 week Day Hospital program.

The situation was a little weird, despite my trying to be as clear as possible, but she was reaccepted and is scheduled to start therapy on Sept. 20th.  The program is an average of 4 weeks.  So if we end on Oct. 20th that is the anniversary of her surgery!

Her goal for therapy will be to accept a certain amount of bites at every meal (I think they said 5 bites).  So we can know at each meal we have that she will take in a consistent amount of food.

I am not at all looking forward to these 4 weeks, nor am I looking  forward to the many many months to follow where Anna will have to be fed separately from the rest of the family.  I am told, however, that those who have success are those that stick with the program.

I am at least 75% monkey!

Anna has had good, consistent weight gain.  I think she was 22lbs at her last weigh in.  So that is 5lbs since we started the tube feedings in December.

The Nutritionist we see showed us some interesting information that I kept help but ponder.  On the CDC growth chart (so a growth chart put out by the US govt based on heights and weights of US children) Anna still falls just below the lowest curve.  So amidst a country plagued by childhood obesity my child is considered quite small.  Then the nutritionist showed us the WHO growth chart (put out by the World Health Organization and based on heights and weights of children wordwide) and Anna was in the 15th percentile!

Now I KNOW there are lots of starving children in the world, but I do not think that the majority of children worldwide are starving!  Just a really interesting perspective!  Also makes me less concerned about Anna's size....yeesh!

And that is just about all the  news going on around here.  We are otherwise busy with just the typical summertime get togethers, living life, doctor appts,  etc.

These are the faces of children who have mixed a 4hr+ car ride with lots of mucous and Dorito cheese.   It required a  chisel to remove once we got home!!

a face only a mother could wash love!

Size Doesn't Matter

What momma with a little girl doesn't just count down the days until they can squeeze that baby fine hair into two little pigtails??

She of course immediately went to pull them out...so they were messy once I got the camera.

But ACKKKKKK is there anything in the world sweeter????????????????????????????  I am dying of cuteness here!!

And how is one supposed to resist tickling that little neck??

And my dear Camera-getter.  Look at those awesome skinned knees!!  The poor little fellow seems to be coming down with a cold.  Prayers that it just remains as sniffles and drips and that no one else fall victim.

Yarn Along

FINALLY getting around to joining Ginny at Small Things in her weekly yarn along!!

I have been a reluctant, on and off again knitter for years, but in an effort to find something nearby/simple that I could do to get out of the house once per week I decided to sign up for a knitting class at my local fiber shop, Woolbearers (PS check out the website and like Woolbearers on FB...great little shop!!).

So the class I signed up for was to knit this mammoth afghan from Barbara Walker'sLearn-To-Knit-Afghan Book Let's just say I have been taking this class since September and I just started block 12!! There are 63 blocks in all.  I should be done with it when I am about 80 LOL!

But I REALLY love getting out on Tuesday evenings, sitting with the other ladies and chit chatting...or even just sitting in silence as we are all busy counting our stitches.  I always come home refreshed.

As for what I am reading.  I have two books going.  One is The Blueberry Years: A Memoir of Farm and Family.  It is about a couple who bought an old farm and started an organic blueberry farm...haven't gotten much past the intro so that is all I can tell you LOL...

Also just started We Took to the Woods which is about a family that lives in the Northwest corner of Maine in the middle of nowhere with no roads and no neighbors.   Again just started it so that is about all I can tell you at this point, but both are very interesting so far!

And just in an effort to catch up on all my missed "Yarn Along" opportunities here are my completed squares for the afghan!  I am sort of questioning my color choices....I love each color, but I think I should have matched them up differently.  You live and learn *shrug*



(BTW if someone can  tell me what the story is with those white squares next to my links please do share!)

Our Day at CHOP

After waking up, meeting with the surgical team, eating breakfast, watching Elmo, having vitals taken, and a long nap on Mommy's lap we headed out of our room to see what fun we could have.

We stopped by the toy room where I really enjoyed this little pink car.  I am still a little sore so I am preferring to sit or be carried and this does the trick.

I drove around outside my door in this fun little car.

I also took several rides in a wagon to see the fishies in the adjoining wing and drew with markers and crayons all over myself, the table....ohh and a little on the paper  :P

After an action filled day I am POOPED and am more than happy to just get in my jammies and watch some Sprout before lights out.

The very nice nurse assisted Mommy in setting up my very first feed with my new G-tube.  It didn't hurt at all.

And now I am ready for bed and they tell me I will be going home tomorrow!!

(btw, the pink in her tube is not blood or anything gross.  Just her dose of Tylenol that will be flushed through once her feed is started)

Surgery Day

Anna's G-Tube Surgery

So, we saw Anna's surgeon yesterday and Anna is scheduled for surgery to have her G-tube placed tomorrow.  The type of button she will be getting is called an AMT Balloon Mini One.  It is very low profile and basically resembles the valve on a beach ball.  So today will be a day all aflutter with activity getting everything together, organized, and taken care of.

Prayers that all goes smoothly,  that Anna is calm and comfortable, that Ben has a good time at Nonno and Nonna's house (he always does!).....and for a few minor things:  we stay on the surgical floor not the GI floor and we have our own room!

Will  try to update tomorrow once everyone is settled.

Two Steps Forward, Three Steps Back, You Do The Hokey Pokey and You Turn Yourself Around...

Just the latest and greatest about Anna her progress.....

After several phone calls with her GI to discuss her ongoing issues with tolerating her overnight feeds and no change in what she is taking by mouth.  And how the vomiting is causing a lot of stress for Anna (and her parents) because she is needing her tube replaced over and over.  Not to mention the trauma of vomiting in itself and the eating/food aversions it causes.  She definitely needs no extra food aversions!  The GI felt we should do a Milk Scan to test her gastric emptying/reflux.

Anna had her scan on Monday morning and she did great (this kid could give classes on how to be a good patient).  The results showed mild to moderate gastric emptying issues, but she was having several episodes of reflux.  We have decided, based on the results, to switch Anna to a g-tube with the possibility that she will need to be switched to a g/j-tube in the future.  We have an appointment Monday morning with her surgeon (the beloved Dr. Adzick!!) to discuss the procedure and to schedule it.  The surgery requires at least a one night inpatient stay (I am saying "at least" because it seems for Anna these things tend to require more time for her!).

Last week we also received a somewhat discouraging phone call from the Feeding Team at CHOP.  They had been reviewing her records and were very concerned to see the difficulty she has been having tolerating her feeds.  Because of that they want to reevaluate Anna with the whole team and psych.  Their feeling is why give a child intensive therapy to teach them to eat more when they literally can not physically tolerate any more food.  I am hoping with the better then expected Milk Scan results that that will swing them in the right direction.  So we are waiting on an appt for her new evaluation.  They are so back logged and wait listed that we have to wait several weeks/months to get back in for that.  We are on their cancellation list though so hopefully that will help (when she had her original eval. we called in November I think and got a February appt, but they called us with a cancellation appt for mid December....so I hope the same will happen again).

So there you have it.  We are in a bit of a holding pattern right now with Anna.  But we are very excited to be moving to a g tube for her.  This will make things easier on everyone and will be totally discreet....unlike the big ugly orange tape across her beautiful face.

Wordless Wednesday - Great Aunts

The Dress In Action

Finally got some pictures of Anna in the jumper I made her.  I think it looks pretty cute!  And in terms of fit should could use a slightly smaller bodice so that the straps were closer together.  The straps slip off her shoulders a bit.  But this way she has a little room to grow.

Overall it is a great little dress.  Just fun, easy, and versatile.  Good for a warm day of play or to be a little dressy.  Long sleeves, short sleeves, leggings, etc etc...Plus she just looks cute!

And of course Ben wanted in on the photo shoot LOL....this was the face he made when I told him I would take his picture only if he would do a big smile!