United Brachial Plexus Network, Inc.

Well - we're home from Texas - another trip down! Things are going great - and Cassidy is doing wonderfully!

I have to tell you - this trip - we used the phone number for Robert Soto's town car service from Houston Intercontinental Airport to the Hotel and from the Hospital back. It was WONDERFUL! WAY BETTER THAN A TAXI! I encourage ANYBODY who's going to Texas to use his service - his # is listed on Francine's web site under "Traveling to Texas". He picked us up at the airport - we got our bag and walked out the door to see a man holding a sign with our name on it - he took our bags and put us in a Lincoln Town Car and drove us to our Hotel all the while chatting and being VERY friendly. He then told us to give him a call the night before we wanted to leave and let him know where and what time - and so we did - and another driver picked us up at the hospital and took us back to the airport - same thing - nice friendly driver - helped us with our bags - and for THE SAME COST AS A TAXI!! $90.00 round trip - which is the same exact cost of a taxi!

The new renovations at the hospital were GREAT! Saved us a hotel room for 2 nights! The couch pulls out into a full size bed and isn't like a Serta - but it's comfortable enough! They supply you with as many pillows and blankets as you want - the thermostat controls only your room so you can keep it as warm or cool as you like - sooooo much room for your bags or anything else you bring. . .. private TV/VCR - so bring videos! AND YOUR OWN BATHROOM WITH YOUR OWN SHOWER! GREAT! Although the water pressure in our room wasn't too hot - the shower fit the purpose!

And as always - everyone is soooooo nice there! Cassidy just loved her nurse! Still talks about her now - says "my Nurse - Monica - she took care of me - and gave me medicine - and made me feel better!"

We've taken a break away from the board for awhile - just been really really busy! As some of you know I've been working 2 jobs - and of course the doc visits and therapy and you name it - plus, Darian (8 years old) has had some issues lately too! She was recently (about 4 months ago) diagnosed with Bi-Polar disorder (runs in our family - my father is also Bi-Polar) - her's is called "Early Onset Bi-Polar Disorder" and she is catagorzied as ultra-rapid cycling - which means she can go from very very hyper and happy to very very depressed and sad all in a couple hours (sometimes a couple minutes). So we're on our 3rd round of meds - and this time she's taking Depakote - which requires monitoring of her liver - so that means "Blood Work" - which for her is terrifying. So we went for our first blook test - at which time we found that her right arm does not extend all the way! (Some of you know - Darian was also hurt at birth - just not as badly as Cassidy - she had a broken collarbone - and a slight stretch - 4 months of PT and back to normal) - but it kills me that I never noticed that her arm doesn't extend fully! She's 8 years old - why didn't I notice that! Needless to say we went to the ped's office -she got her blood drawn - was upset and crying - so they had her lay down (which is when the nurse found that she can't extend her arm) and finally when the draw was over we were getting ready to leave - and the next thing I know Darian is face down in the doctors office having a seizure. Scared me to death! Soooo - the nurse had me help turn her over and the seizure passed - she went and got her Doctor who came in and checked her over, her blood pressure was a little low but that wasn't abnormal since she just had the seizure. . . he feels it was most likey just because she hand't eaten that morning yet and her blood sugar was low - coupled with the anxiety from the blood test...but just to be safe sent her for an EEG (which she had done on Thurs) and she is being referred to an orthopedist for her arm!

So now here we go - we have Cassidy and her Therapy appts and surgeries and treatments - now Darian will be added to the list (hopefully only therapy but we'll have to see what the orthopedist says) and Bi-Polar - blood work - and psychologists. . . . .

DOES IT EVER END?

I'm drained. I feel like I have NO time. I don't want to go back to work - I feel like I need to spend my days taking care of my kids - but I can't afford to quit!

Any suggestions would be greatly appreciated. I'm looking for another job at night right now - maybe that would free my days to take care of my kids - and save on day care. . . . . .

Thanks,
Anita

Sorry I was so long winded - it's been awhile!

Hi Anita! I did get your pictures - they were great!
Can I post them on the site?

About the blood work - do you know about EMLA? EMLA is a numbing cream that is applied about an hour before any needling is done and it completely numbs that area. I got our ped doc to prescribe it for Maia for IV's and such and I tried it on myself (I do bloodwork often) and I told them to use the largest horse needle they could find because I really wanted to test out EMLA's limitations - and I didn't feel a thing - I felt the pressure of the needle slightly but absolutely no pain.

If you know exactly where they will be drawing blood - then you put on a glop of it and cover it with a Tegaderm (plastic bandage) - do all this an hour before - and it'll make such a difference!

I hope that the seizure was as the doc thought - fear and anxiety. Yikes = that must have been SO SCARY!!

Anita, I'm curious to know how they assessed that she is bi-polar? Can you share this with us? And about her elbow - in case you need this information - there are two dynamic splints (used for elbow contractures) on the splint page http://www.injurednewborn.com/maia/splints.html
Dr. Nath explained that sometimes there are deformities in the elbow joint - are they going to do xrays?

With all that's going on in your life and stress, you do sound very good and positive (with the exception of your job) or am I reading you wrong?

In any case,
we'll be keeping you and your family in our thoughts,
big hugs to you,
francine

I would be very concerned w/her having a seizure on this drug.

My husband is epileptic and uses it.

Good luck\


Gayle

I would be very cautious w/her having a seizure on that drug.

My husband takes it for his epilepsy. It is used for both reason.

Talk w/her doctor. It is very unusual to have a seizure

Gayle

Francine - absolutely - go ahead and post them on your site - that's why I sent them - that, and to show you my little (big) Cassidy these days! Are you going to the picnic in Ohio in June? We will be there!

I am definately going to talk to her Pediatrician about the numbing drug - it's mentioned in a book I'm reading - "The Bi-Polar Child". She was basically diagnosed from about 6 months of therapy sessions - family history (my Dad is Bi-Polar) and some specific symptons that Bi-Polar kids have - like rapid changes in eating - like constantly eating 1 day - and then barely eating enough to strive for a day or too - but not seeming to loose any energy from it at all - trouble falling asleep - staying asleep - and trouble waking up. Frequent nightmares or night terrors - rapid (extreme) mood swings - increased energy and aggitation in the evening hours. She's also ODD (Opposional Defiance Disorder) which is almost always diagnosed along with Bi-Polar - they kinda go hand in hand.

As far as Depakote goes - being an epilepsy med and preventing seizures - she hadn't had her morning dose - she had to do the blookwork while fasting so nothing to eat or drink and no meds from midnight through until her bloodwork - so her level of depakote was almost non-existant in her system - kids metabolize drugs faster than adults do. . . . so this is why the depakote didn't prevent the seizure.

Her Pediatrician - Psychiatrist - and Psychologist are all working very closely to make sure she is safe and treated successfully. Her Psychiatrist also recommened Omegabrite - which is a fish oil supplement of Omega 3 oils - which I ordered online 2 days ago - so I should have them by the end of the week. The research on Bi-Polar disorder (especially in children) is very intersting these days and we're hoping that the Omegabrite will help to level out her moods - they are still very very rapid in cycles - and she can get VERY RAGED AND ANGRY and say horribly cruel things - and then 30 min. later is so remorseful and depressed - it's really horrible to watch your child struggle against something that they cannot control - and very hard to deal with the stress this causes in your household. My Psychiatrist has prescribed Celexa and Xanax for a little while to try and help me get over the "hump" - and then I'll be getting rid of those. I don't want to be dependant on meds if I don't need to be - but right now I feel like I'm loosing my mind.

We haven't went to the Orthopedist yet - we were waiting until we got back from Texas and got Cassidy situated - so I'll be seeing our pediatrician tommorow for an incision check and will get the referral then. I will talk to them about the dynasplint. I sure hope Darian doesn't require any surgery for hers - god knows with her Bi-Polar disorder it will be a very stressful event for her - but if that's the case - we'll be taking her to Texas too! I plan on having Dr. Nath or Shenaq - whomever is going to be at the Ohio picnic check Darian our too!

Talk more later!

As always - thanks for the support!

Hello Anita,

I wish you all the best of luck, and wanted to mention that you may wish to contact Peggy at peggy@ubpn.org to discuss your situation re: 2 children with bpi...she has a similar situation that you might find interesting.

Best of luck,
Bridget

I must have missed something! What did Cassidy have done? Bailey had the capsulodesis on 11/26. She has four week to go in the brace at night. The rooms sound great. They must be really new. It doesn't sound like our room. Good luck with everything. We have a 5 month old baby. We are just now getting things settled back down. It seems every time things are going smooth then BOOM! Something happens.
It was great to see you on the board. Hugs to your family.
Jodi Robert and Bailey

Cassidy had the capsulodesis - and release of a bicep contracture on Jan. 29th! We were at TCH - and on the 11th floor - but it seemed like all the floors were remodeled.

UPDATE ON DARIAN: EEG came back normal - no reason for the seizure other than low blood sugar at the time of testing from not eating breakfast mixed with anxiety over the blood test. . . so that part is over. Had more bloodwork on Friday - it went a little better - but the EMLA didn't work all that great. . . it did the trick to numb the arm for the needle stick but I think the bigger problem is the fact that she's almost 9 years old and smart as a whip - and the anxiety builds. . . so no amount of numbing will help! She cried, but got through it OK this time with no seizure. I'm hoping for at least a 3 month repreive! (ha ha ) Hopefully they won't need to do anything with her meds for awhile!

Cassidy is still doing good - it's almost as if she doesn't even have a splint on - it certainly hasn't slowed her down (at all!). Sometimes she comes to me and says her straps are too tight - then I loosen them and she's fine!

She's got such a good attitude! She just keeps saying - it's not time to take it off yet - but when we do my arm will be big and strong!

Our kids are such troopers!

And whoever it was that posted the Erma Bombeck thing! THANK YOU! It came at a very good time for me when I was doubting myself greatly! I was having quite the pitty party for myself - doing the why me? Why 2 kids with 2 seperate problems? I feel alot better!

Hi, Anita. It's nice to see you back on the board. It does sound like you are very busy. I'm sorry that you have so much going on, but from what you wrote, it looks like you have a really good handle on everything. You seem to have a very good understanding and I'm sure that will help. I don't have any medical advice to offer, but I can tell you that for me prayer helps to keep me focused on just the anxities for that day and to not get too stressed out about what's down the road.

Nicole also had the capsulodesis 2 months ago, plus Dr. Nath did a partial pecs release at the same time. Nicole's been out of the splint during the daytime for about 2 weeks. I hope you don't mind, but I wanted to comment about something you wrote: "She's got such a good attitude! She just keeps saying - it's not time to take it off yet - but when we do my arm will be big and strong!" I think it's great to have a positive attitude and even better that Cassidy has such a great attitude herself. I don't recall if she's had any other surgeries or if the dr. prepared you on what to expect, but when you initially remove the splint, Cassidy's arm is likely going to be weaker than it was before (at least initially, until you build it back up again) and it might even look a little smaller due to atrophy. I just wouldn't want her to set herself up for a big disappointment when the splint comes off. Another thing is that it might be painful for her to even move her arm for the first few days. It's really all the therapy that will help to eventually achieve that "big and strong" arm after surgery. The strengthening exercises against resistance don't even start until the entire 16-week splint period is over.

I'd like to share a recent experience. I babysit for a friend's almost 4-y.o. daughter sometimes. Well, last week she told me that her Mama told her that Nicole's arm was going to be fixed after the surgery, but that her Mama was wrong. I don't know exactly what her Mom told her and I haven't remembered yet to talk to her about it, but apparently for 8 weeks while Nicole was in the splint, her friend thought that when the splint came off it would be all better. Wrong! Well, it was very heartbreaking to hear those words, but I am glad that if anyone had to say it that it was someone other than Nicole b/c I wouldn't have wanted her to have that expectation. Anyway, I just told the girl that only Jehovah can fix Nicole's arm (we believe the earth will be a paradise someday and that God will cure those living on it of our illnesses), but that the doctors are trying to make Nicole's arm stronger and to help her arm as much as they can until we're in the paradise.

I know that Cassidy didn't say that her arm will be fixed either so the experience isn't really the same, but I thought it might apply to some extent, just in thinking about the expectations that some children have. Oh well, I hope this helps. I hope that you're able to figure out a way to spend your days with your children. It's such precious time that I am very thankful to have. Take care and welcome back.
-Tina :0)