Sammy's Botox

We went to get Sam's first Botox injections today with his physiatrist. He made us feel very comfortable with getting the shots...not sure if we looked nervous or what, but we have been on board with this from the get-go,so I'm not sure why he felt we needed such intense reassurance.

So he put the numbing cream on his leg and wrapped his leg with pink saran wrap. He thought that was the coolest. He was ok for the shot part, he only flinched and started to fuss, but he only got 4 shots total, even though it was a lot of fluid each, so it was over relatively quickly and he was fine afterward...didn't actually cry. My little trooper! So we told him because he was so brave that we would stop at the store and get him a treat. So Brian got him and Luke a pastry and after dinner I asked him if he wanted it and he looked upset. So I asked him what he wanted for a treat, and he looked to the cabinet. The kid wanted his Gerber yogurt snacks for a treat! He is SO NOT my son! Passing up sugar for yogurt??!! UGH! I have failed in my role as a mom! :) LOL

So we wait now and pray that he doesn't get any swallowing issues or breathing issues that sometimes happens with kids who have issues to begin with. We also have to wait 3-5 days to start to see if this is going to have any effect whatsoever. He did a low dose to help prevent the side effects,so we aren't expecting any major benefits...anything would be good though!

Might be going on Friday since we all have the day off to Boston to go pick up Sammy's talking computer. We'll see!

YAH!! Brian got an email last night that Sammy's comm. computer is "ready for pick-up"! :) (We chose not to have it delivered from Boston because it would have been another $325!)

We'll have to see if the rep will bring it with him when he comes to train us! Can't wait!! :)

So poor Luke was sent home yesterday from school for getting sick. Poor kid ran outside and threw up on the lawn outside of the school! Quick thinking, I'd say! ;) He's feeling better, hopefully it's back to school tomorrow... IS IT SUMMER YET??!!

So Sam passed his swallow study for thickened applesauce and baby cereal, but aspirated the pudding and pediasure from the bottle. At least that's better than before! So apparently the Baclofen dosage had something negative to do with it after all! Dr. Duda told us that he wants us to meet with a feeding team at Mass General before we make any big decisions about getting a g tube. He said we can meet with an ear nose and throat guy too about the sinus infections. At least now we know that the g tube isn't an absolute! Thank God! We are giving him mostly solids now anyway, with the toddler dinners, so there really isn't much he would be aspirating other than the bottle anyway..I guess we'll try thickening the bottle again like we did years ago...and so it goes...

off again...

So Sammy and Brian (I can't take tomorrow off, my poor kids at school have their yukky all-day standardized testing) are off to Baystate again tomorrow for another swallow study. So he is only on 1 1/2 mg. of Baclofen, I guess if we started seeing swallow issues at 2 1/2, then hopefully we will get more accurate results now that he is only at 1 1/2 and Brian refuses to take him lower again....the good news is that his pulmonologist (the one with moderate CP) said that he wants us to take him for a 1-2 day eval at Mass General for the sinuses and to see a feeding team, that may help us avoid the g-tube if we can get alternative things to do for him...I'm not sure what, but it was SO nice to hear that the g-tube wasn't automatically the result of the swallow study we had. Weird how God is starting to answer my prayers that my little man be given a break already! We still haven't even given a second thought to getting to see the ped. urologist about his undescended testicle yet! Hey, we have bigger fish to fry at this point, right??? I'm thinking that will wait until summer vacation for me! Our ped. said they will probably just wait and watch it anyway....

Still waiting on the talking computer..it's been like 6 weeks, so maybe 2 more to go?? And hopefully the new adaptive "stroller" will come soon, too...

So funny, to add, Sammy got a cough assist machine last week, that is basically like a vacuum for his lungs..it helps to bring up the mucous..well his pulm. told us to do it for a maintenance thing, and I am thinking I don't want to do this 3 times a day because it seems like torture to me! Well, I did it with him (MY first time doing it with him) for the 1st time on Saturday, and he GIGGLES after you do it!! That's right..my odd little man GIGGLES after this thing sucks out his air! I told him we are vacuuming the Sammy so he doesn't get dusty! Of course, that makes it even funnier! Hey, if we can't laugh, we're going to cry, so may as well make the best of it! :)

New pics of Sammy and Brian on the new tractor...yeah, he HAD to have it! (Brian that is!) I call Sammy "Farmer Sam" now! We sing "Old McSammy had a farm..EIEIO!"

We had our follow-up with the GI doc today in town. He said the biopsy results were normal as well as the probe for reflux. So definitely no more Prevacid for the little man..one less med I guess...when he does have symptoms in the middle of the night, we are just giving him Mylanta. He hasn't had any symptoms in a while, though..still waking a few times a night crying, but we are hoping the Botox fixes that..fingers crossed! So the GI is also rescheduling his swallow study now that he is on a minimal dose of Baclofen. (Yes, I had weaned him off of it completely, and Brian decided to put him back on it at 1 and then 1 1/2 ml because he thought he was seeing spastic symptoms and he was gritting his teeth. I fought with him tooth and nail about his decision to give it to him again, as I really feel like it's Brian imagination, what the heck is 1 1/2 ml possibly doing for him, but he is just as insistent at keeping him on it. I'm thinking 1 1/2 ml won't affect the results...we may even make sure he's off altogether for the week of the test. We'll see when it is.) The GI doc told us to go see the ped. surgeons anyway to "get the ball rolling" for the g-tube. Not what we wanted to hear, of course! :(

So we continue to pray for strength and guidance to do what is best for Sam....I send my prayers to Mary since I figure she knows about the "mom" stuff! :)

The pics included are to prove how ridiculous it is for me to get a decent picture of my 2 boys together :)...they were "playing" wii together...Sammy basically just watches, but Luke has been great about explaining what he's doing and making him feel like he's part of the game. :)

Ok, I just looked up croup, and it totally sounds like what Sam has. The sudden onset of symtoms overnight totally fits! How strange! Usually only affects kids up to 3 like this, but it must be because he has other issues that it is coming on full force! UGH! My poor little man! ANything else??!!

So now I have a sick Luke at home today. He came home from a birthday party yesterday not feeling well and ended up with a fever last night. I had to fight with him to make him stay home today because he wanted to go do his project at school. He did wake up this morning with no fever, but with him, it comes back at a moment's notice, so I didn't dare send him.

Sammy woke up Sat. night with a new cough...he now has developed a nasty, croupy dry cough. No fever, so I am thinking it might be something he aspirated. ugh!

Botox on again...

Ok, so we have ANOTHER appt. for Sam's Botox! Let's try this AGAIN! It's March 30...I am praying he stays well until then! We couldn't get anything sooner as his dr. is on vacay next week and then booked the week after that..ugh! I have my fingers crossed that the Botox will loosen him up enough to let him sleep comfortably through the night! Brian and I can only take just so much of this sleep deprivation, I swear!

HA! This pic cracks me up! We went to a Dr. Seuss night at a local bookstore and my sister Mary was the Cat in the Hat...Sammy thought she was pretty funny! :)

So all went well on Friday....Of course we were late getting to Baystate, but they took us right in and got him all set to go.... He did fine falling asleep but was miserable when he woke up..poor guy...i don't blame him! By the time he had a popsicle, he was finally stopped crying and was ok..they took out the iv and let us go home. He was fine on the way home and acted like he didn't even know the ph probe was in. We went back on Sat. morning to get the probe taken out and then went to BJ's for some shopping. Hopefully we will get the results today...

The endoscopy looked good, I guess, to the doctor...so we are waiting for the reflux results.

Thanks for the prayers!