off to Baystate tomorrow...

So we got the ok from the pediatric anesthesiologist at Baystate this morning that it will be ok to for Sam to get put under for his endoscopy tomorrow even with his little bit of wheezing left. SO we have to be there for 6:45!! God help us!! I am not a morning person AT ALL! :(

Say prayers that all goes well!

ok....

So Brian brought Sammy to the doctors again today and he now has a double ear infection. So on the antibiotics again...this explains his recent dislike of the bottle,his ears probably hurt when he sucked...he was drinking it today though, thank God! It is the major source of his calories right now since he is being weird about eating a lot lately. I am just continuing to pray that he is better for Friday...

So apparently they finally got a stander for him to "trial" for school. It's only taken 5 MONTHS!! What the hell??? I am SO annoyed! Anyway, we'll see how it works out...
We got his new feeder seat yesterday, a bigger size for him, it seems to be holding him a bit straighter in his torso which is a good thing. STILL waiting for the comm. device..it's been 4 weeks since it got ordered, and we were told 4-8 weeks, so we're at least halfway there! Just can't wait for it! Then maybe he can tell us what is bothering him when he's sick....

I swear to God...

I am SO done with Sammy and school and these cooties! He ended up throwing up this evening while I was trying to get dinner made...I am assuming it was from swallowing all of the junk that he is coughing up. Poor dude! He was still trying to smile afterward, even though he was pale as a ghost and falling asleep from exhaustion in his chair. I waited a bit and then gave him his seizure med with a little sherbet since he can't not have that, and he seemed ok with it, so then we did his neb. and got him to bed. He fell right asleep..I am tellin ya, I don't think I am going to survive him being in school and catching everything! I am so overwhelmed with worrying about him everyday non stop! I told Brian there is no way in hell he is going to school this week, since we are praying already that he stops wheezing before next Friday for his endoscopy or they won't be able to do it. He doesn't need to be catching anything else in the meantime, since that is where he got this latest cold, of course right before we went on break! I am seriously considering putting school on hold for a month or so...until we get all of his shit set and taken care of in terms of appts. and tests, etc. Him having somebody ask him to identify a CUP out of two options is NOT exactly a priority for him right now! (Yeah, that's actually what the Speech therapist wrote as something she was having him work on with his eye gaze! Are you shitting me??? This is what he's getting sick for??? Something he's been able to do sinc e ayear old???) UGH! Can you tell I'm frustrated?? I think this bowl of low-fat mint choc. chip will do the trick! Did I mention that I am also fed up with my weight gain and ended up buying myself an elliptical after Christmas when they were on sale at Sears and have already lost 7 lbs.? I can't see it yet, but it's better than staying at the status quo... I am working on wearing a "real" bathing suit this year instead of my "mom" suit as Brian calls it! :) LOL

Sammy was helping me with making crescent rolls the other night. He loves to help me do ANYthing! He likes to "set" the table which includes me rolling him in his chair over to the places and then I take the plate from him and put it on the table..too bad my eldest isn't so into helping! ;)

He was just having me hold his hand against the rolls and push, but then he figured out if held his hand with his fingers out(an accomplishment in itself!) and then pushed his fingers out and in, he could roll them with minimal help from me! Brian and I were overjoyed at this simple success...I also forgot that he was slurping his soup broth the other weeknight. I asked him to do it and then demonstrated it, and he just started doing it! I thought Brian and I were going to shout it off the rooftops! He couldn't understand what the big hoo-hah was! We were so proud! :) Isn't it funny how a disability just throws every expectation of manners out the window!

He hasn't been sleeping well at all, pretty much not sleeping for the past 5 days...but last night was only up at 5 a.m. and then went back to sleep until 8. Of course now that my "shift" of getting up with him at night is coming to an end, he'll feel better and start sleeping for Brian, watch! Just how things roll around here! He is definitely feeling ok during the day and was Mr. Chatty today! It cracked me up how "talkative" he was! Just babbling up a storm! Don't tell me the Baclofen wasn't affecting his mouth! He is off of the med altogether now and is making all sorts of sounds and is finally doing approximations when we ask him to without trying as hard as when he was on it...he has his scary trex sound back and his pirate sound, too! He had totally lost it when on the Baclofen. i think he was gagging because he had a sore throat, because he was eating things much better today! It seems to be the case when he has a sore throat. I am trying all sorts of different foods with him to try and give him more variety and get him enjoying eating again and gaining some weight!

Found out yesterday that we don't have to stay overnight in the hospital for his ph probe test for the reflux! I am SO relieved! I am glad I called! The last time he had one done he was 2 months old and they made us stay, except we ended up leaving in late afternoon because he did nothing but cry...as usual back then! But we were going to stay in a room with another kid and her obnoxious white-trash parents. We insisted that we leave before doing the overnight...so I was DREADING this one! One overnight in the last month is more then enough..so they will do the endoscopy to look for acid damage and put in the ph probe and then send us home after he wakes up and is ok. We just need to go back the next day to get it removed...(the probe is just a little tube like when he had a feeding tube into his nose in the NICU) attached to a monitor.
So at least we can be comfortable at home..he has to be off of his Prevacid for 5 days before the procedure so we'll see how that goes...it will be interesting to see if he's even refluxing at night..if that's the issue with the waking..we'll see...

Ugh...my eldest is now in Florida for winter break with my sisters and brother-in-law...he is having loads of fun and of course doesn't miss his old mother at all! I miss him, though! :(

Sammy started with a fever yesterday and a little cough, and was still a bit warm today. He was acting WAY better today, though...thankfully...hopefully he is on the mend now...my little man just keeps getting everything out there! Hoping to have a vacation without a sick little man the whole time! He is gagging on purees lately, not really looking forward to getting the swallow study redone for fear that it will just re-confirm that he needs a g-tube. He will eat solids ok, but purees now are not his thing... go figure... doesn't help when he needs to take his meds in something like fruit or yogurt...ugh....

We are awaiting his new feeder seat that we ordered recently because his old one is getting a bit small for him. We are STILL anxiously awaiting the arrival of his comm. device! And Brian has an appt. with him on March 2 (I am out of family sickdays) with the PT at Shriners and the wheelchair guy to pick out a seating and wheelchair setup for him. They look pretty supportive and he can get a purple one...that being the crucial piece! :) He got a haircut last night..couldn't take the bangs anymore! ;) (See pic)

Well, off to bed! Maybe Sammy will bless Mommy with another whole night of uninterrupted sleep like last night! God bless him! It was wonderful, especially since I am on break and am the one getting up with him! ;)

more pirate pics

Sammy the pirate

We had Sammy's pirate birthday party yesterday at our house... He loved it! My sister even dressed the part! (Note the bling on his fingers--he loves the bling just like his mom!) :)

He is so blessed to have so many people that love him! He got lots of books and color WOnder books and videos! All his favorite! And some gift cards so he can pick out his own movies and books! :) He loves to do that! Luke even serenaded him with "Happy Birthday to You" on the sax! It was great! I made the pirate cupcakes..they came out well I thought...Sammy liked them!

On a side note, we figured out that he threw up at school because he ate honey in his cereal that morning. The last time we gave him honey, he threw up too, but we didn't connect it! So no more of the sweet stuff for my little man!! So bananas and honey, what strange allergies! At least now we know!! He was also dx with a sinus infection and is on more meds for that....

Happy Birthday, dear Sammy...

Oh, my sweet boy is 5 today!! Oh my goodness! I can't imagine that it is possible! Unfortunately, he was sent home from school yesterday for throwing up twice. Poor guy! I think he has another sinus infection..we are bringing him today for a sinus xray.

HAPPY BIRTHDAY, SAMMY!! :) I love you!