Pulmo Apt Update

We saw Pulmo today...for a 9am apt. Finally saw the doctor at 11!! OMG This guy is ALWAYS a couple hours late! (But he is a great doctor) Jacob's feever is back....has been since last friday. I kept hoping and praying we'd see some sign of ILLNESS! (is it really bad when you hope they are sick??) He's running around 100-101 (rectal) and acting perfectly fine!

The only major difference....he's drinking more again. And coughing while drinking, not constant...but enough to cause us to notice. KWIM?

His pulmo thinks he's aspirating on the liquids again. And that his swallow study was not "completly accurate" since he only took 1 tsp of liquid. I have to agree So for the next week (till monday the 12th) we're taking away all cups and drinks. I'm so upset and depressed...he just learned to sign Drink! I hate not reinforcing his new signs....especially when it takes him so long to learn them. But I cant see any other explanation for this feever...The first feever in January started when we introduced the nuby cups....I thought this then too....but he ended up with a GI bug, then a ear infection.....but there were 7-10 day's in there with no infection...and still a temp.


On the up side we did see Rachel P today! It's hard to believe he's been out of the NICU at CHOP for 2 years! I gave her this site addy....so if she stops by maybe she'll drop us a line ;) Congrats Rachel!!

Signing Time!!!

Jacob has become very interested in watching his Baby Signing times videos and has picked up so much!!

He now can sign on his own...
Eat
all done
cracker (his own variation)
drink
more

with prompts and sometimes on his own...
Thank You
Train
Banana
Milk...

He's starting to really take off!!!!


PS 61 days till our move to South Carolina!!!!

I found a daycare for Jacob...I think being around other kids will do wonders for him!

The Mayonnaise Jar

When things in your life seem almost too much to handle, when 24 hours in a day are not enough, remember the mayonnaise jar and the 2 cups of coffee.

A professor stood before his philosophy class and had some items in front of him When the class began, he wordlessly picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was.

The professor then picked up a box of pebbles and poured them into the jar He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was.

The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with an unanimous "yes."

The professor then produced two cups of coffee from under the table and poured the entire contents into the jar effectively filling the empty space between the sand. The students laughed.

"Now," said the professor as the laughter subsided, "I want you to recognize that this jar represents your life. The golf balls are the important things---God, your family, your children, your health, your friends and your favorite passions---and if everything else was lost and only they remained, your life would still be full.

The pebbles are the other things that matter like your job, your house and your car. The sand is everything else---the small stuff. "If you put the sand into the jar first," he continued, "there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff you will never have room for the things that are important to you.

"Pay attention to the things that are critical to your happiness. Play with your children. Spend time with your parents. Visit with grandparents. Take time to get medical checkups. Take your spouse out to dinner Play another 18. There will always be time to clean the house and fix the disposal. Take care of the golf balls first---the things that really matter. Set your priorities. The rest is just sand."

One of the students raised her hand and inquired what the coffee represented. The professor smiled and said, "I'm glad you asked." The coffee just shows you that no matter how full your life may seem, there's always room for a couple of cups of coffee with a friend."

68 Days....

TILL WE MOVE!

OMG so much packing to do! So much....Everything!

Time...we need time..or maybe just a few extra hours in each day! LOL

I hate "month" evals...

I hate eval's when they give "months" of skills. Jacob's Teacher did the "Help" assessment for his IFSP that is coming up.

He falls in the Low end of each catagory with a few scattered skills higher up.

Cognitive --> 15-24

MonthsSocial/Emotional --> 18-24

MonthsSelf Help --> 8-19 Months

Jacob is currently almost 29 months old.

Update on Jacob...

WE ARE FEEVER FREE!!!!!

It only took 22 days...but I think we finally got this licked! In the end he's on Amoxicillian for 10 day's for a ear infection that WAS NOT there when this started...or even last week. His doctors are hoping that the ABX will also kill off any lingering infections...possibly sinus or in his lungs. They also put him on Prednisone to help his lungs...and that ended on Friday. So far so good...cough is almost all the way gone even!

Caitlynn's doing a bit better in handing in her homework....though is now ereasing messages to her teacher. She's grounded till wednesday for that stunt.

Mom and Pauls home should be listed this coming week... *PRAYING* for a quick sale! And a speedy move! We've got alot set already for the move. Jacob should qualify for insurance without a problem...his feeding tube and delays pretty much see to that. And as long as he doesnt earn more then $1600 a month HIMSELF...he'll qualify.

We're trying to figure out room colors...Caitlynn's and Jacob will be the hardest to decide!

Feever of Unknown cause...

Jacob's had a feever since the 15th of January. On Tuesday we did a chest x-ray to rule out pneaumonia. It was clear. From there they sent us for blood work...we basically left home at 9 for a apt...and got back at 4 after all that. Including a dr apt for me. His Ped Dr. W at Kids 1st has reviewed what has come back so far of his blood work. All of which is normal. They ruled out Mono and Epstien Barr...as well as testing his blood levels and such. Yet today is day 17 of a 101+/- feever. She has refered him to the Diagnostic Center at CHOP. Jacob's nurse....and Dr. W both believe this could be something to do with his G-Tube, and a staff type infection. It's obvious it's SOMETHING...yet nobody can pinpoint anything. He's not tollerating his full feeds, his cough is getting horendous and his feever is still up. We're to watch his hydration closly..and at first sign of trouble take him down to the ER. I sence a very very long weekend coming. Thankfully his nurse for monday (after calling her on her cell today ) has agreed to come early Monday since to be at CHOP by 8:30am for a 9am apt ... we have to leave home by 7 at the latest....maybe earlier.

Overview The Children's Hospital Diagnostic Center is designed to meet the needs
of patients with complex or hard-to-diagnose illnesses. The physicians and staff
of the Diagnostic Center work closely with referring physicians in managing the
overall care of the patient. The physicians and staff coordinate subspecialty
consultations, evaluate subspecialtists' findings and report all results and
recommendations to the referring physician and parents. Children with complex
problems requiring inpatient care and the use of multiple subspecialties may be
admitted through the Diagnostic Center staff physicians. The result is a team of
professionals dedicated to assisting the referring physician in coordinating the
care of children with complex illnesses.