Weight gain! WOW!

I never thougth we'd see the day when Jacob was gaining tooo much too fast!!!His nutritionist and doctors want him gaining 4-6 ounces per mouth. (1 to 1.5oz a week) and this past week even with him being sick...he gained 6ounces!! AHHHHH Due to his low tone and weak muscles they dont want him to get to the point his muscles cant handle his weight.Ok...time to cut back some feeds... I'm so not used to this! LOL

The weekend...

Was pure He!!....Jacob spent a day and a half in wonderful "Hotel CHOP"...he had a feever that hit over 104 then a petechaei rash started. So CHOP put him in the EDECU (Emergency Dept Extended Care Unit) till 3pm on Sunday. Monday we went back to the Ped cause the rash started again....but this time it was not a Petechaei rash and just *proably* a virus.

He has no runny nose, stuffy nose...or any other cold syptoms...so definetly odd!! But that's Jacob for you!!

After the Neo-Follow up told us last week that there are new things out every day....and Jacob just may be "something new"...Just what we wanted to hear.

Happy Thanksgiving Everyone!!!

Hi All!!! From our home to yours. I want to wish everyone a very happy (day late) Thanksgiving!! We went to G-Ma and Pops house for dinner yesterday ... and had a great time. We gave Jacob his normal 3oz of yogurt though his tube in the AM...then water the rest of the day...and he attempted to eat a bit! He ate about 2-3 teaspoons of food...himself!!

Yes ... of course there are pictures... ;) And sometimes they speak louder then words!!!

I dont know where to start...

Everything is so scrambled in my head right now. Way way to much info...in such a short amount of time.


The easy part (mentally)... is that Jacob's button size got changed. He went from a 14F 1.5cm that he's had since he was 2 months old. To a 14F 1.7cm. They did have to cauterize his site and it took Frank, Hillary & I to hold him down while Beth G. Measured his stoma and cauterized it. He was so traumatized he fell asleep in his umbrella stroller (uncomfy for sure!) right after. Well that was the END of the apts...the very last thing we did...so now for all the other stuff.


They have Jacob's
-----Height at 35 1/2"... (60%), though we know hes taller...he always shrinks a couple inches on CHOP's measuring boards! Tortcher devices for sure!
-----Weight at 26lb 14oz (50%)!! WOW that's pretty accurate...about 2oz gain since last week. They are very happy with his weight!
-----Head Circ. 18 1/2" Under <5%. Still not happy with it...but has improved over last apt.

There are no adjustments to his meds there. Though we are going to try the Trimicacone (sp) cream for his stoma to try to help the granulation. They are happy with his hydration and his current feeding regimin.

He's tested at a 6 MONTH old for speech. I guess in itself that's not shocking. He doesn't talk. But they also said his eye contact is very poor, and his pointing is almost non-existant.

His Cognitive is evaluated at 18 Months. He's not doing tooo bad with gross motor, but is in need of some sort of orthotic. We'll find out later what is reccomended. John Izak (Orthologic's in Philly) is going to come out to evaluate him.

The toe walking she believes is sensory. And agrees that a weighted or deep pressure vest could be good for him. While we were there he JUMPED! First time every...got his feet off the ground...JUMPED! She see's no tight muscles in him, but did comment on how weak and lax all his muscles & Ligaments are. Again....with no known reason.

They are keeping him at a DX or GLOBAL delay. And Severe Speech Delay.

We go back in 6 months for more extensive testing. They think he may fall into the Autistic Spectrum.

Overall i'm not doing terrible. Like I said before...he's Jacob, and will always be JACOB! No matter what DX or test or script there is. I just wish I knew what his future held, and what we could do to help him more.

Theres more i'm sure.....i'll try to sort though more later.

Today's the day...

And I just feel like kicking and screaming saying "I DONT WANNA GO!"....but of course we'll be leaving here soon to go visit Dr. B and her team. Wish us luck....i'll update later.

Hard week..

I hate hard weeks....I'm so dreading tomorrow...but looking forward to it at the same time.

Tomorrow is Jacob's 2 year Neonatal Follow-Up. We will find out where he is in PT, OT, Speech, Cognitive...and everywhere else! I'm expecting great delays...100% delayed in feeding and speech.... Also checking with their PT on braces...he's tripping over his own feet and running tip toed alot. When he stands he's pushing his knees back too...not sure about that one! (Anyone who know's me know's my knees go back about 2 inches...and I loose about 3 inches in height if I do it. )


They will also be checking the fit of his Mic*Key since it seems tight on him at times.




----Mom and I went Christmas shopping tonight. We are not getting Jacob the kitchen. After being there....looking at them. I dont think he'd "get it" enough to play with it. I think he'd just open and close the drawers all day long....so there goes another down on the rollercoaster ride.

What??? Arent I allowed...

In the entertainment center?? I think I caught him the other day...and just now got the picture uploaded. Doesn't he just look innocent?? That picture was before the 2nd red part near his eye was cultured...so proably close to the worst part of his MRSA. He hasnt been doing to good on the antibiotic. It's one of the stronger ones out there, and is upsetting his already fragil stomach. He's vomiting if given a feed to close to the ABX, and sooo tired too. He took 2 naps today...totaling 4.5 hours...that is SOO not like my little man!

Well we have part of Christmas shopping done....with only 37 more sleeps to go! OMG where is the time going this year?? We got our free turkey from Giant today, and a bit of food shopping done. Jacob was out of Danimals yogurts...he get's 3oz each morning..and it does seem to help him. Caitlynn got some of the Danimal XL's ... dont know how they are...but hopefully they are filling enough for her. She got on the scale at Mom-Mom's the other day... 70lbs! I wasn't sure she'd hit that mark soon. She's about 53 inches tall though you would think she was lighter.

Here's one last picture from tonight. You can see how Jacob's eye is healing, but also if you look close there's some CHOCOLATE on his face! He ate 2 Mini M&M's!!!

MRSA

4 Little letters that can make your stomach drop. Jacob has a infection in the cut near his eye. It looked TERRIBLE on monday so we took him to the doctors. It took Hillary and I...plus the doctor to hold him down while they cultured it. She didnt start him on an Antibiotic (ABX) cause she didnt feel he was going to have any other problems...but cultured it to be sure.

Last night I got the phone call from Kids First....he has MRSA (Methicillin resistant Staphylococcus aureus) it's a staff infection that is very resistant to most ABX's. They started him on the highest dose of Bactrim (generic form) last night....and hopefully that will clear him up. His G-Tube site looks grosser then normal, but we're praying that it is just his granulation tissue causing the trouble there. Overall he's a happy boy...and his eye looks MUCH MUCH better. We're following Rigorous hand washing procedures here also.

On a better note! Jacob has a new nurse coming to orientate with him on Monday! She'll be able to fill in a few Misc day's this month...and fill the Friday spot we've been having so much trouble with! Let's hope that Pat is the answer to our Friday problems! I know my work (and my paycheck!) sure will be glad!

Mom-Mom got her stitches out today...and seems to be doing Ok. She had surgery on her right elbow and hand, and has been out of work almost 2 weeks now.

Caitlynn is doing good...working on keeping up with her room, and improving her "talking" out loud in class. So far the first 1/4 of the year went good. It's a real challenge for her this year...which is nice to see for the first time in 4 years! Her AMP/MG teacher said she's "not quite there" with her writing, but is making huge improvements each week! And Math....well she's getting some things that are stumping the rest of the family! LOL

Ick....I hate the rain..

Today is just one of those overcast...yuck days! Caitlynn's just getting home from a birthday party at the YMCA, and Jacob seems ready for a nap. John and Kammy are coming over, maybe we'll play some cards.

Tina is also stopping by around 4 to pick up the halloween costume she lent Jacob.

The cut by Jacob's eye has us baffled right now, we're calling the doctors tomorrow and they will proably want to see him. It's turned into 3 bubbles that look like they are filled with fluid/puss.

He's got a small cold...and is wheezing today and his nose is flaring. Hopefully it's just something small...that we can handle.

Caitlynn got her hair cut on Friday...and I think it looks great! She loves it to....so that's what matters!

Here's 2 pictures from the weekend.