Ty-bugs MAW pre-trip to ride Jaws and go to Disney! July 10-16 2010

[cantwaittoseemickey]

I hope the Dr. has him going in a positive direction now. malrotation's are common with Ashley's syndrome too but that's one of the things she didn't have... ((((Hugs))))

I am so glad she didnt have these to work with. They sure have cause Ty alot of problems with his bowels. hugs!

 

[cantwaittoseemickey]

so far today has been an unproductive day. Tomarrow will be the day where his so tired out of it and stairing becuase of being in here. But we will see. But we will already be unhooked and ready for the next test by then. So we will see. There have been a few instances so well go off those.

Then tomarrw its off to the big apts. Renal ultrasound an the urologist team. I will post as soon as I am able to.He has kidney reflux which is not good at al. So the Ultrasoumd will tell us if thre is damage and how big his bladder is.

THank you for all of your thoughts and prayers. They mean so much to us.

 

[cantwaittoseemickey]

We are back from Childrens. I am exhausted so I will update tomarrow. I have a pic to share of Ty when I get them uploaded tomarrow. Thank you for all of your thoughts and prayers.

Have a nice weekend everyone.

 

[Momofwishkid]

So glad your home. Get some rest and I'll be waiting to hear how everything went.

 

[cantwaittoseemickey]

Finally got some time to post. Ty's veeg went ok. We won't get any results of that for a few weeks as our dr is out of town and we had to leave for Ty's ultrasound before the dr that was on could come in and talk to us.

His renal ultrasound was unchanged so his kidneys still look good We were so thrilled to hear that. First they want to do another spinal mri to make sure his spine has not retethered. The urologist said we have two options. Botox injection in his bladder or the bladder augmentation surgery. The botox injection is a newer procedure and has not been done on many kids. As a matter of fact Ty will be the 3rd patient to have this at our hospital. That certainly didnt ease my fears and the tears began to flow I am happy in one sense that we have another option before going to the big surgery but uneasy about something being so new and not allot of outcome studies on it. But we have made the decision to go ahead with the botox and pray for the best outcome. They will do a cystoscopy and insert the botox then a few weeks later he will have a urodynamics study. If it shows no change then they will repeat the botox then do another urodynamics study a few weeks later. If the botox is helping to lower his pressures and his bladder is growing then they will do the botox injections as needed or approx every 6-9 mos or can be as early as 3 months. We would know when we start seeing symptoms again.If there is no change then we will know that the botox isnt going to work and will start planning for the bladder augmentation.

Now about our trip. IT IS ON!!!The botox injections will not hinder the trip and if they have to do the bladder aug we can wait till after his Wish trip!! I will be calling our MAW ladies tomarrow to let them know We will have something to look forward to and talk about while he goes through the botox and if he needs the Augmentation we can work on the scrap book with the pics and go back through the trip all over again

Some pics

all smothered in shaving creme always a great thing for hospital stays

were leaving yay! Look at my fuzzy hair

yesterday looked like it was going to not be a so great day but see next pic

A picnic in the woods yesterday

 

[Momofwishkid]

Im so glad the renal ultrasound showed no change in Ty's kidney's and you have another option before considering the surgery. I am so hoping the botox is just the thing to help.

 

[noahsketomom]

Me too -- hoping and praying the botox will work!! Thanks for posting the pics -- LOVED seeing them!

great news about his kidneys and of course that the trip will go on as planned. Watch out, Jaws!!

Also I'm glad the VEEG went well -- was praying for you and him on that one. He looks great in the pic!

 

[cantwaittoseemickey]

Im so glad the renal ultrasound showed no change in Ty's kidney's and you have another option before considering the surgery. I am so hoping the botox is just the thing to help.

Thank you

Me too -- hoping and praying the botox will work!! Thanks for posting the pics -- LOVED seeing them!

Thank you.

great news about his kidneys and of course that the trip will go on as planned. Watch out, Jaws!!

Yep he better watch out for Ty unless he chickens out just before. I am going to make sure both kids are on the outter side LOL

Also I'm glad the VEEG went well -- was praying for you and him on that one. He looks great in the pic!

Thank you. He did pretty good. He played with the shaving creme and food coloring for quite a while till I went down and got a ball and had him all over the room

I just spoke with the neurosurgeon nurse and she said he want's the mri done with contrast. I don't ever remember Ty getting contrast is that usually given through and iv?

Still trying to get ahold of our Wish coordinator

 

[cantwaittoseemickey]

We are all set She will start working on things a little closer to our date. Our GKTW villa has already been reserved.

 

[pnutallergymom]

So happy to hear the news that the trip is on!!!!

Not so great news on the surgery. I'm so sorry you guys have to go through that. Sending you a !!!

 

[kellyw8863]

Yah! I'm glad his kidneys look good! I hope that the botox works for him and you can avoid the big surgery. Just out of curiousity, where was Ty's cord tethered? I just thought I'd throw this out there, but last year GI really wanted neurosurgery to re-scan Ali's spine, but her neurosurgeon indicated that a tethered cord post repair will always look tethered on MRI. In other words, it's not accurate in determining whether or not a cord has retethered. I don't know if that's unique to the type of tc Ali has, but I just thought I'd share in case it's helpful!

Ty looks great in his pics. I'm so glad the trip is on!

 

[cantwaittoseemickey]

Yes Kelly that is our question too. I thought once the repair was done that it always shows something. I have an email in to the nurse who is going to ask him that and also why are they doing a contrast mri this time and not last time when he went in with normal results and took a chance and it was there kwim? We wonder what difference the contrast will show and why wasnt it used last time. We love our neurosurgeon he is absolutley wonderful but we are just curious as well. Just to help us understand a bit better. He is out of the office right now so It may be a little while before we know.

I am really biting my fingers on this mri as I thought this would be something that was behind us. Ty did not react well to all of the pain meds they had him on to keep him sedated to stay still. I thought once it was over we wouldnt have to go back through this again. I know there isnt a huge chance it is retethered but last night he was bending over and he said "ouch mommy I feel like I just had my back surgery when I do this". So Im wondering about scar tissue. It hasnt even been a year

 

[pacrosby]

Glad to hear you're all set for the trip

Boo on all the medical stuff

Love the px! Glad to see his spirit shine through despite all the cr*p he must endure. Looks like you've got yourself a fighter

 

[kdzbear]

I am glad to hear your trip is ready to go. I am not sure how botox works on organs, but it did great wonders on Tyler's neck to fix his severe torticollis and there were no side effects! The hospital visits are never fun! I can't wait to read more about your trip plans!

 

[cantwaittoseemickey]

I am glad to hear your trip is ready to go. I am not sure how botox works on organs, but it did great wonders on Tyler's neck to fix his severe torticollis and there were no side effects! The hospital visits are never fun! I can't wait to read more about your trip plans!

Hi! The main thing that I see that could be a problem is that Ty already has swollowing problems and the big side effect is that if he already has it it can make it worse for a while

 

[kellyw8863]

Hi! The main thing that I see that could be a problem is that Ty already has swollowing problems and the big side effect is that if he already has it it can make it worse for a while

I don't think that the botox would affect his swallowing if it's going to be given near his bladder. Ali also has dysphagia and her docs have talked about botox into both her pylorus and her sphincter. No one ever suggested that it would affect her swallowing. Their hope when we discussed it was that it would improve her motility so that we didn't have to worry as much about her refluxing and aspirating on that. Did you get your questions answered regarding the MRI?

 

[pnutallergymom]

I don't think that the botox would affect his swallowing if it's going to be given near his bladder. Ali also has dysphagia and her docs have talked about botox into both her pylorus and her sphincter. No one ever suggested that it would affect her swallowing. Their hope when we discussed it was that it would improve her motility so that we didn't have to worry as much about her refluxing and aspirating on that. Did you get your questions answered regarding the MRI?

I totally agree with Kelly on this Tonya. Brigitte has had botox to her pylorus and it was exactly for what Kelly said, to help her motility. The botox to her pylorus did help her GI motility so it did cut down on her aspiration and reflux for the time that it was working. I can totally see the idea that using Botox to his Kidneys etc. as the principal is essentially the same. In fact, that makes a great deal of sense, but kidneys and swallowing??? Never heard of the correlation. I'll be interested to hear the explanation on that one!!

 

[cantwaittoseemickey]

I don't think that the botox would affect his swallowing if it's going to be given near his bladder. Ali also has dysphagia and her docs have talked about botox into both her pylorus and her sphincter. No one ever suggested that it would affect her swallowing. Their hope when we discussed it was that it would improve her motility so that we didn't have to worry as much about her refluxing and aspirating on that. Did you get your questions answered regarding the MRI?

Thank you Kelly. I have heard of some not so great stories with botox and kids with CP and that had me a bit uneasy. I looked at the Botox website and in side effects it mentioned can effect swallowing but it didn't mention which body parts it was given in.

His neurosurgeon was out of town this week so I won't know till next week. I am going to do a reminder email b/c I woudl really like to get all of this done on spring break. Which right now is looking unlikely since it is a week away.Hopefully it will work out.

I totally agree with Kelly on this Tonya. Brigitte has had botox to her pylorus and it was exactly for what Kelly said, to help her motility. The botox to her pylorus did help her GI motility so it did cut down on her aspiration and reflux for the time that it was working. I can totally see the idea that using Botox to his Kidneys etc. as the principal is essentially the same. In fact, that makes a great deal of sense, but kidneys and swallowing??? Never heard of the correlation. I'll be interested to hear the explanation on that one!!

I read it on the Botox website.I'm now thinking it may have meant if it was used in other places but it didnt clarify where. You are helping me to feel more comfortable with thisI think the with him being the third child at our hospital is what is making me so uneasy.

They had to change his formula again. He is now on Nutren 1.5 and it is 8 cans a dayHe is back on night feeds which is something he just did not want to do. He's also on the pump more during the day.I just dont like backward slides. But this should help with his stomache tolerating things better and cut down on his constipation. Maybe this is THE one. This year is our first year working with a nutritionist with his feeds and they have been so helpful.

 

[cantwaittoseemickey]

Tonight we decided to rent Panyo as Ty has been really wanting to see it and it did not dissappoint at all! IT was the cutiest movie I have seen in a long time. He Even wants the cd to the music that it has and that has to be very special for him to want that.

Anyways we were going to work on our links and they proved too much for some kiddo's on a Monday so I will work on cutting them out tomarrow and have them ready to be glued together tomarrow

Here are a couple of pics from tonight

Mr. Goofy himself! He loves Goofy!!

Tommorow night we are watching the BLack stallion. That is Sierra's pick. Then we hope to work on the Links countdown chain Its going to be about a 101 day countdown but that is fine. We are so happy Ty has been given this huge wish. To see the kids just so happy is so great. WHat a wonderful thing Make A Wish does.

THANK YOU MAKE A WISH!!!!

 

[wishin' on a star]

Hi Tonya,
Just wanted to say hello, and let you know I'm following along. Sounds like you have a few things coming up health wise, and I hope they all go well!