Brigitte's PTR...Wish Trip. MAW/AKL April 24th-May 5th

[Momofwishkid]

Im so sorry you are dealing with the rounds of appointments right now. I hope they come up with some answers to help Bridgette.
Your trip is getting closer. The last month seems to fly by and Im sure will for you being so busy.
Just a note on the pirate league. We all did it and I'll be updating Gavin's TR today on it. Just be sure you get some make-up remover!!

 

[noahsketomom]

Hi Everyone,

Yes, we are still here!!! Just busy. I am starting my marathon outpatient clinic appointments. We have 7 in the next 6 weeks. Have I mentioned how much I HATE the hospital?? My stomach turns each time we set foot in the door.

We had an appointment with a new sub-specialty yesterday to discuss Brigitte's neuro status. The recommendation is that we set her up with Boston's LEND Program. It is a service made up of Neurology, Psychiatry, Psychology, Gen. Peds, Developmental Medicine, Social Work, PT, Speech, and OT. She will go in for a 3 days of intensive appointments and NeuroPsych Evals. Then at the end we will meet with all of the team members and go over their findings and recommendations. I guess we will end up with what is usually a 300 page report that will help us address her "deficits".

Next up on Friday is GI. Her weight is down ....but that is no surprise. She is struggling terribly at night with the visceral pain and we wind up shutting the pump off more than it runs!! What can you do??

I probably should get her into the Pediatrician soon too...another sinus infection. We had a good 3month run at the end of October...but she's had one for January, February and March again. Guess I should add ENT to the list again!!

I have pulled out my suitcases and have started to throw a few things in here and there. Got Brenna another bathing suit the other day. Hoping to pick up Crocs for the kids this weekend. I think I am going to make "Vacation" themed Easter Baskets this year!! Crocs, bathing suits, sunglasses, sunscreen, etc....

I am having a blast living vicariously through all the new TR's!! I just can't wait for this vacation to be here!!! We have 3 cheerleading competitions and 2 baseball tournaments coming up. One is in RI, the other in NY...so those will keep us occupied!!! I think we are down to 38 days now....but who's counting??

Hi Shannon -- so sorry about all the appointments! I feel the same way about our Hospital sometimes!!! I'll be thinking of you --- just think with each one that's down, it's one step closer to your trip!

I'm also doing that for Easter this year! Of course, Abby reminded me that last year I had all these clever clues that related to Easter, that I had them go all around the house in order to find their basket (we do one family basket). I had totally forgotten that and so now I've got to rack my brain for some ideas!!

Where's the baseball tourney in RI?

And I'm also living vicariously through the TRs....and getting nothing done here!

Just letting you know we'll be thinking of you and praying for Brigitte's appointments! Keep throwing those things in to the suitcases so you can keep your mind on something outside of Boston Children's!!!

Blessings,

 

[cantwaittoseemickey]

Im sorry to hear you are on a whirlwind of apts. I get in a funk when we have apts like that. My stomache goes on its own tirade We will be thinking of you and Brigette.

I am so sorry to hear her weight is down and the pain is so bad. I hope they come up with a plan to help her feel better.

I need to think about baskets too. I sort of gave the kids thier gifts when they were having a hard day. They were zhu zhu pets so now I need to find something else to put in there

 

[pnutallergymom]

Im so sorry you are dealing with the rounds of appointments right now. I hope they come up with some answers to help Bridgette.
Your trip is getting closer. The last month seems to fly by and Im sure will for you being so busy.
Just a note on the pirate league. We all did it and I'll be updating Gavin's TR today on it. Just be sure you get some make-up remover!!

I read your TR last night!! Love the Pirates League Pics!! I had a feeling the make up would be tough to get off.....we had that problem with hair when Brenna got her BBB makeover a few years ago!! She looked like a princess for a loooooong time!!!

Hi Shannon -- so sorry about all the appointments! I feel the same way about our Hospital sometimes!!! I'll be thinking of you --- just think with each one that's down, it's one step closer to your trip!

I'm also doing that for Easter this year! Of course, Abby reminded me that last year I had all these clever clues that related to Easter, that I had them go all around the house in order to find their basket (we do one family basket). I had totally forgotten that and so now I've got to rack my brain for some ideas!!

Where's the baseball tourney in RI?

And I'm also living vicariously through the TRs....and getting nothing done here!

Just letting you know we'll be thinking of you and praying for Brigitte's appointments! Keep throwing those things in to the suitcases so you can keep your mind on something outside of Boston Children's!!!

Blessings,

Beth, the baseball tourney is in Johnston and Providence....two different fields. The team is staying at the Hampton Inn in Warwick. I am getting annoyed because the schedule isn't finalized yet, and we have no idea whether there are games on Friday night or not.....or even Sunday. Brenna has cheer practice on Sunday and can't miss it because she has 3 competitions coming up!! So, I am going CRAZY!!!! With 4 kids, you always need a "plan"....and I don't do well when there isn't one in place!!!

Im sorry to hear you are on a whirlwind of apts. I get in a funk when we have apts like that. My stomache goes on its own tirade We will be thinking of you and Brigette.

I am so sorry to hear her weight is down and the pain is so bad. I hope they come up with a plan to help her feel better.

I need to think about baskets too. I sort of gave the kids thier gifts when they were having a hard day. They were zhu zhu pets so now I need to find something else to put in there

Thanks for the thoughts!! I am so sick of the doctors!!! I hate it even worse when we seem to be floundering without alot of helpful solutions....makes it worse when pain is an issue. Lets just say, she has not been a very happy camper lately!!!

 

[Mtopher4]

strong-willed and determined .. that is Ashley too LOL.. Add Sassy, bossy, determined not to clean up anything at home, etc.... Her Brother has ADD and I know she must have it too

Our week worth of appointments is coming up the last week of April SUCKS

subscribing... I know I have seen you around but I missed your PTR somehow

 

[Mtopher4]

DUH... I have looked at your carepage before Your kids are Beautiful

 

[cantwaittoseemickey]

I read your TR last night!! Love the Pirates League Pics!! I had a feeling the make up would be tough to get off.....we had that problem with hair when Brenna got her BBB makeover a few years ago!! She looked like a princess for a loooooong time!!!




Beth, the baseball tourney is in Johnston and Providence....two different fields. The team is staying at the Hampton Inn in Warwick. I am getting annoyed because the schedule isn't finalized yet, and we have no idea whether there are games on Friday night or not.....or even Sunday. Brenna has cheer practice on Sunday and can't miss it because she has 3 competitions coming up!! So, I am going CRAZY!!!! With 4 kids, you always need a "plan"....and I don't do well when there isn't one in place!!!




Thanks for the thoughts!! I am so sick of the doctors!!! I hate it even worse when we seem to be floundering without alot of helpful solutions....makes it worse when pain is an issue. Lets just say, she has not been a very happy camper lately!!!

I'm so sorry she is in pain. I hope they can come up with something to help her.

 

[noahsketomom]

Beth, the baseball tourney is in Johnston and Providence....two different fields. The team is staying at the Hampton Inn in Warwick. I am getting annoyed because the schedule isn't finalized yet, and we have no idea whether there are games on Friday night or not.....or even Sunday. Brenna has cheer practice on Sunday and can't miss it because she has 3 competitions coming up!! So, I am going CRAZY!!!! With 4 kids, you always need a "plan"....and I don't do well when there isn't one in place!!!

Hi Shannon, hope things are going well for you and that you didn't run into any snags with the appointments.

I totally know what you mean -- having no plans with 4 kids in tow usually doesn't work out too well!!! Let me know if you need anything or if I can help you in any way. We're about 40 min from Providence, and maybe 50 from Johnston. If I can help you at all, don't hesitate, kay?

Thinking of you guys and the craziness of the next month. But just think of the time when you can RELAX in the Florida sunshine!!!

 

[pnutallergymom]

DUH... I have looked at your carepage before Your kids are Beautiful

Thank you so much!!

I'm so sorry she is in pain. I hope they can come up with something to help her.

Thanks you...she is a tough cookie!! We messed with some of her meds, so hoping that will help a little bit!!

Hi Shannon, hope things are going well for you and that you didn't run into any snags with the appointments.

I totally know what you mean -- having no plans with 4 kids in tow usually doesn't work out too well!!! Let me know if you need anything or if I can help you in any way. We're about 40 min from Providence, and maybe 50 from Johnston. If I can help you at all, don't hesitate, kay?

Thinking of you guys and the craziness of the next month. But just think of the time when you can RELAX in the Florida sunshine!!!

Thanks Beth. We finally got the schedule on Saturday. Its not so bad now. No game on Friday night. A double-header on Saturday and depending on how they do in those games, he might play on Sunday. We have decided to stay at my MIL's for the wknd. She is only 30min from Providence, so I cancelled the hotel!! I'd rather spend the $$ on Disney!!! Thank you for your offer though!!!



Sooooooo.....Brigge has been making out ok at some of her appointments. GI is happy that she hasn't had any dramatic weight loss. We'll revisit the issue of having the central line placed again after we get back. Tomorrow she has a pulmonary appointment.

In MAW news.......I haven't heard anything new yet. I emailed them today to let them know that we are literally booked up every weekend until we leave. Travelling to RI, NY, Springfield, Worcester, Easter, etc!!! I wanted to see if we could nail down a date to get together to go over the documents. I think she thinks I'm crazy. She didn't want to make any plans until a week or two before we go. Fine by me, I just wanted a date. Not that I am any more busy than someone else, but with the kids sports schedules, Brigitte's doctors appointments, the holiday coming, and have I mentioned that DH is studying for the Bar Exam in July???? This house is just non-stop all the time and I like to have things on my calendar!!!

Ok...stepping down off my soapbox now!!

 

[Momofwishkid]

Thank you so much!!


Thanks you...she is a tough cookie!! We messed with some of her meds, so hoping that will help a little bit!!



Thanks Beth. We finally got the schedule on Saturday. Its not so bad now. No game on Friday night. A double-header on Saturday and depending on how they do in those games, he might play on Sunday. We have decided to stay at my MIL's for the wknd. She is only 30min from Providence, so I cancelled the hotel!! I'd rather spend the $$ on Disney!!! Thank you for your offer though!!!



Sooooooo.....Brigge has been making out ok at some of her appointments. GI is happy that she hasn't had any dramatic weight loss. We'll revisit the issue of having the central line placed again after we get back. Tomorrow she has a pulmonary appointment.

In MAW news.......I haven't heard anything new yet. I emailed them today to let them know that we are literally booked up every weekend until we leave. Travelling to RI, NY, Springfield, Worcester, Easter, etc!!! I wanted to see if we could nail down a date to get together to go over the documents. I think she thinks I'm crazy. She didn't want to make any plans until a week or two before we go. Fine by me, I just wanted a date. Not that I am any more busy than someone else, but with the kids sports schedules, Brigitte's doctors appointments, the holiday coming, and have I mentioned that DH is studying for the Bar Exam in July???? This house is just non-stop all the time and I like to have things on my calendar!!!

Ok...stepping down off my soapbox now!!

Good luck with the appointment tomorrow. Wow! It sounds like you guys really are busy. Were you able to get a date for the get together?

 

[kellyw8863]

Hey there! I've been thinking of you guys. I'm glad that GI went well, and I'm hopeful that pulmonary went well, too. I hear you on wanting dates. I feel like the next couple of weeks are going to be insane, and honestly, I'm stressed about getting ready to go on top of everything else! I'm hopeful that we can meet up at AKL. I think it would be cool to have a cocktail and watch the kids play should our schedules allow!

Thinking of you guys.

 

[pacrosby]

and then of course there's that cocktail with me

I've been quite remiss lately and am so behind on everyone's reports. Sounds like your pretty busy too. Don't worry about finding time to meet with them for final review. I think ours came out a couple of days before (and it was a week night). It took very little time. Or maybe you guys are getting some kind of send-off? That'd be different of course.

Hope all the appts go well

 

[cantwaittoseemickey]

Just wanted to see how everything is going. Thinking of you all!

 

[pnutallergymom]

Good luck with the appointment tomorrow. Wow! It sounds like you guys really are busy. Were you able to get a date for the get together?

Hi Jennifer!!

They never did give me a date!!! Said they were still working out a few details and would be in touch with me in a few weeks!!! This totally puts me over the edge, but hey, what can you do???

Hey there! I've been thinking of you guys. I'm glad that GI went well, and I'm hopeful that pulmonary went well, too. I hear you on wanting dates. I feel like the next couple of weeks are going to be insane, and honestly, I'm stressed about getting ready to go on top of everything else! I'm hopeful that we can meet up at AKL. I think it would be cool to have a cocktail and watch the kids play should our schedules allow!

Thinking of you guys.

OMG Kelly, I am stressed tooo!!! Dealing with it by total avoidance !!! I left you a note on your PTR on our plans to see if we can squeeze something in!!! The kids would have a blast together.....but you might leave rather quickly after Brigge gets to talking! She's been sooooo bad lately!! Lets just say I have been doing alot of this after putting that kid to bed at night . I think that not uttering a word for the first 3 years of life makes her think she needs to catch all the way up!

and then of course there's that cocktail with me

I've been quite remiss lately and am so behind on everyone's reports. Sounds like your pretty busy too. Don't worry about finding time to meet with them for final review. I think ours came out a couple of days before (and it was a week night). It took very little time. Or maybe you guys are getting some kind of send-off? That'd be different of course.

Hope all the appts go well

Yeah, Pamela, I don't think a send-off is in our future . Actually, I think they can't wait for this wish to be over with and get us off there backs!! They'll probably drop that envelope off and !!

Lets def. figure out a time to get together.

Just wanted to see how everything is going. Thinking of you all!

Hey Tonya!! Things aren't going at all!!! Terrible, I know!!!!! Thanks for the love!!!

 

[pnutallergymom]

So, seems as if I am sitting here spending another night on.....what else??? The DIS. This obsession really needs to stop. Really, truly it does.

I did manage to get myself up and out the door this morning while Brigge was at school. Hit the old Wally World and feel good about the fact that I got the kids Easter gifts out of the way!! Oh, and I got a pair of shorts for Brigge and some swim diapers!!

What????? Its a start, right???

I know, I know!! Terrible.

I realized that I had written that Brigge's pulmonary appointment was yesterday, but it was actually today. So I picked up the little chatterbox from school and headed into Boston. Her appointment was at 12:45...we were seen promptly. Spent 3 hours in the room with her doctor. Yes, THREE hours . Perfect timing for rush hour traffic heading north back to NH.

I should be grateful we got alot accomplished. She's going to have another sleep study and an exercise induced stress test. Yes, on a 3 year old. The oxygenation in her lungs is really bad. We know she shunts due to her cardiac defects. Her ASD was left open as a pop off valve so to lessen the stress on her overworked right ventricle. Soooooo.......it causes her to be somewhat dusky and short of breath, especially during exercise. Nothing we didn't know about. The problem is being exasperated because she is still aspirating. We think it is because of the cleft that was left unrepaired due to a laryngospasm she had during the case and the surgery was cancelled. Got to figure out this now too. Her chest xrays are looking worse each time she has one. Again, nothing new, just stuff that hasn't been dealt with because of all the other stuff that has been going on. Just can't avoid it anymore.

I got a very nice email the other day from MCAZER who so graciously offered to send the kids autograph books. After literally spending two hours with them trying to pick out what the wanted, they made their choices!!! The package came today, but nobody was allowed to open them. The package is sitting on the buffet just waiting to be opened by those bad, bad kids!!! Seems as if the little feet in this house think that the days of listening to mom and dad are over and they can abide by their own rules. So, Margaret, I PROMISE as soon as they can behave, I will post pictures of the contents. Tonight, I have been dubbed "THE MEANEST MOTHER IN THE WHOLE WORLD"!! Apparently they haven't realized how to win over my affection and those words aren't getting them their package any quicker.

Ok, gotta go make myself another and do some more and after that, some more . Sooner or later I will get some packing done!!!!! Just not tonight, and probably not tomorrow. Definitely not this weekend!! Maybe next week???

 

[cantwaittoseemickey]

Hi Jennifer!!

They never did give me a date!!! Said they were still working out a few details and would be in touch with me in a few weeks!!! This totally puts me over the edge, but hey, what can you do???




OMG Kelly, I am stressed tooo!!! Dealing with it by total avoidance !!! I left you a note on your PTR on our plans to see if we can squeeze something in!!! The kids would have a blast together.....but you might leave rather quickly after Brigge gets to talking! She's been sooooo bad lately!! Lets just say I have been doing alot of this after putting that kid to bed at night . I think that not uttering a word for the first 3 years of life makes her think she needs to catch all the way up!



Yeah, Pamela, I don't think a send-off is in our future . Actually, I think they can't wait for this wish to be over with and get us off there backs!! They'll probably drop that envelope off and !!

Lets def. figure out a time to get together.



Hey Tonya!! Things aren't going at all!!! Terrible, I know!!!!! Thanks for the love!!!

RUHHH ROOO!!! Not good!! You sound like me. I think they were so ready for us to decide if we were going to be able to go or not and when I finally gave them the answer they probably did a huge sigh of relief that they didnt have to hear from me for a while!

 

[cantwaittoseemickey]

Glad you can begin to focus on some things that they didnt have a chance in the past. I hope the tests go well hun.

Ps. Im having a HARD time keeping up with everyone right now But lovin it!!!

 

[Mtopher4]

I got into it with my sassy 8 year old boy and my wish kid tonight. Kids..... Ashley thinks since she is special she shouldn't have to clean. I told her if she is able to make a mess she is just as able to clean it up. They always want to get away with something don't they? LOL

 

[Momofwishkid]

Glad you were able to get some shopping done. Dont you just love it when your appointments make you hit that rush hour traffic.

 

[pacrosby]

You can't possibly be the meanest mother in the world. That's MY title!!