A Mother's Journey through Erb's Palsy

A Very Long Day....

2014-03-19T18:07:00.000-04:00

Today was such a long day. Camryn had her 4th round of botox and it wasn't scheduled until 10am. We left for the hospital at 6:30 and were there by 7:45. We finally went upstairs to pre-op at 8:45 and Cam started getting fussy. They gave her something to make her more comfortable and she almost threw it all up :( The procedure went well but Dr. Grossman wasn't happy. She was super tight under her arm even under anesthesia. He wants us to see Dr. Price next time we go and he wants us to come soon. They said they may even have to do another botox soon. Who knows it may even mean a secondary surgery. After the procedure Cam was a hot mess. She cried for almost 2 hours. We finally left and drove home and almost made it the whole way home without her throwing up. Literally, as we turned the corner to our street she threw up all over me. Awesome....Cam didn't nap at all today so we decided to put her down a little early so we could get a chance to process everything.

Yesterday and today have been two of the harder days I've had in a really long time emotionally. Yesterday, I was nervous about today and today I was upset about the outcome. It's really hard to think that with all the hard work we've been doing it's not really making a difference.

Awesome

2014-03-17T19:37:00.002-04:00

Awesome Video

I'm exhausted

2014-03-14T05:49:00.001-04:00

After working for a while and probably being lazy and see a lag in Camryn's progress I've gone into overdrive with her therapy. I know I can't get everything done every day but after a long day of work and getting up at 5 I do therapy when we get home. We get home by 4:30 and between 4:30 and 6 I'm trying to get in the constraint and STEM Machine at the same time. I also want her to use her elbow splint. Her school is putting on her elbow splint during the day too. After finally finishing therapy with her and having dinner we bathe and get ready for bed. At around 6:30 I come downstairs and get dinner ready for by husband and I. I'm exhausted....I feel completely drained...Next week is our botox again and I'm hoping from now until next Wednesday Camryn stays healthy.

Always Working

2014-03-09T15:05:00.001-04:00

3/6 and CAMP UBPN

2014-03-06T05:51:00.004-05:00

As it stands right now Cam's botox is scheduled for March19th. Hopefully, we won't have any issues with the insurance company. The first time she had the insurance company wouldn't cover it because they said it was experimental. It was a lot of money and we had to pay some of it up front. Cam has a different insurance agency now so hopefully that won't happen. We are still having issues with her current insurance company with paying the hospital bill from her last procedure. We know they are responsible for paying but the hospital keeps sending us reminder bills that the insurance hasn't paid their portion yet. It is all so frustrating. It baffles my mind that if my husband and I didn't work and try to provide for our family that we would never have to worry about this because it would be covered by medicaid or social security which we don't qualify for. Anyway, I think I'm getting pretty run down and coming down with something, hopefully Cam doesn't get it or hasn't given me something that she had. (hoping it's bad allergies)

Another thought I've just had. Has anyone been to CAMP UBPN? I want to go with Cam and my husband but we would have to fly out there and rent a car etc...It can be costly. In my mind it looks like a great experience to meet so many people who have gone through what we are going through etc. I'm all about advocating and networking. My only issue and hesitation is that I don't know if I can emotionally handle it. Just thinking about seeing other families struggling the way we have makes me upset and to see all the different prognosis scare me. (I know every child with a BPI is different) I just wanted to know other people's thoughts on going or if they have gone and if they think it's been worth it.

Check up with Specialist

2014-02-27T18:43:00.002-05:00

Every time I go to Miami Children's to see Dr. Grossman I always feel over emotional. It's so hard hearing what he has to say. Most the time I usually know what he's going to say beforehand and today I knew part of it. Camryn needs more botox. She has tightness under her arm in her muscles there and her peck muscle. This is preventing her from getting over head. Dr. Grossman said she may need three more botox procedures in order to correct the muscles from working the wrong way. She'll probably have it done in the next three weeks. After leaving today I really felt defeated. He said she's regressing a bit because she has grown so much over the past couple of months. It's so hard as a parent who has put so much into Cam's recovery to hear that. I felt completely beaten. For the first time ever he said in black and white that she will never have 100% function in her arm and that this is a lifelong injury and she'll need lifelong therapies and procedures. I guess I have always known that but today it really hit home to hear her doctor say it. It felt so real. Who wants to think their child will never be 100%? Especially, after all the sacrifices my husband and I have made for her and all the hard work we have done. I know, she wouldn't be where she is today if we hadn't but it still hurts.

Some great things that happened today were that they are finally starting a support group for Erb's Palsy at Miami Children's Hospital. Two things, I wish the hospital were closer and I wish this had happened 2 years ago. I'm so thankful that other parents will finally have the support they need. This will be the first type of group in South Florida so it's very exciting. I will try and be a part of it but it's hard with work and it being so far away.

Another thing that is in the works and beginning stages of planning is the start of an annual picnic for South Florida families that see Dr. Grossman. I think it will be so nice to see other families in our area and be able to network and have a good time with them. I can't wait to see how all the children interact with each other too! Maybe Cam will make a lifelong friend :)

That's it for now as I'm completely wiped from chasing a toddler around all day.

2014-02-24T17:58:00.001-05:00

Terrible Two's

2014-02-18T20:03:00.005-05:00

Camryn has officially started the terrible two's! It's awful and exhausting. She just throws the worst tantrums in the middle of anywhere. Any advice? We ignore the tantrums as much as possible but when we are in public there is only so much ignoring we can do. How long does this phase last?

Dear Parents with Sick Kids

2014-02-10T13:21:00.001-05:00

Dear Parents,

Please stop sending your children to school sick. I know I've thought about it many of times as a parent, but don't. I'm a teacher and a parent and can see both sides of the stick but just don't. Cam went to school perfectly healthy last week, and one sick child who came to school Tuesday spread their entire virus to our entire family. Not only was Cam sick for days but I got sick and so did my husband. If they had just kept their sick child at home and taken a sick day I wouldn't have had to deal with my entire family being sick as well. I get it, you have to work and can't really miss the days. I'm right there with you, I have no sick days left. But, as a parent you make sacrifices and those to me are my sick days. (As a parent you don't get sick days.) I know staying home with a sick child is no fun but think about all the other kids and families you are sickening when you send your child into school. I don't mean this to offend anyone or to make anyone angry it's just how I feel. I don't have anyone to watch Camryn on a sick day (it's just me) and if it lasts more than a couple of days maybe I can beg my husband to spare an afternoon or morning so I can go into work for a little. But, we don't send her to school sick. It's not medicate and go anyway. My husband and I were seriously out of commission the entire weekend and couldn't ask for help from any family because we were afraid of spreading what we had.

Please, if your child is sick please keep them home and make that sacrifice, for them, and the rest of the families that your children go to school with.

Stomach Bug

2014-02-05T06:07:00.001-05:00

Camryn had her first throwing up stomach bug. She was fine all day yesterday and went to bed great. She woke up around 9:45 and there was throw up everywhere. I felt so helpless. We immediately put her in a bath and we were in her room after and she threw up again, this time all over me :( We both went back into the bath. After her third bath of the night we went downstairs and she kept throwing up but had nothing really left in her stomach. It was just awful. Thank goodness my father in law is an MD and he gave us the ok to crush up a zofran and give her some. I think that helped. Of course, we watched Finding Nemo (Cam's new obsession) until around 11:15. She finally went back to bed but awoke again around 1:30 hysterical. I picked her up out of the crib and just sat with her for a while and she fell back asleep. I'm trying to let her sleep but it's now 6:06 and I just heard her stir and cry a bit. I haven't decided if I'm going to work today because I'm waiting to see how Cam feels and if she can go to school. I'm showered and up even though I didn't sleep much. I hope this ends quickly.

Cam's First Bloody Boo Boo

2014-02-03T19:53:00.001-05:00

I feel so guilty, Cam had her first bloody accident today. She tripped, of course she didn't catch herself and her face hit the floor pretty hard. At first I thought she was fine and it wasn't so bad but she started bleeding :( She cut her gums and got a bloody nose. My poor baby, I felt so bad. I gave her an ice pop right away, hopefully it won't swell. She was fine after and laughing and enjoying her bath but it was still bleeding a little. I've never felt so awful.

Cast

2014-02-01T11:48:00.001-05:00

This is the cast Camryn wore for 2.5 weeks. She also had a hard neck brace too.

One Year Anniversary

2014-01-31T16:00:00.003-05:00

A year ago yesterday Camryn had her first surgery. I am so thankful for her amazing doctors and my family for their support. It was one of the hardest and longest days of my life. Almost 9 hrs in the OR watching other families come and go. All of it has been worth it. Camryn's progress amazes all of us every day.

At home therapy

2014-01-25T14:17:00.001-05:00

Using Cheerios and a shoe lace to string Cheerios.

Constraint Therapy/Double Splinting

2014-01-21T19:59:00.001-05:00

Weekend Getaway

2014-01-20T19:06:00.001-05:00

My husband and I went away for a long weekend to St. Augustine. It was a great trip! We did a ton of walking and exploring and touring. The food wasn't great except for a couple places we went to GAS and Yardbird Cafe. The other food wasn't great. Anyway, Camryn spent the weekend with my father and his girlfriend. They did a great job taking care of her and it looked like she was having a great time for the pictures. After all the work packing us all up and driving to St. Augustine for 4 + hours today we had to pack up and drive home and unpack again. I always forget how much work going away is even when it's just for a weekend. I'm pooped!

This is Awesome!

2014-01-17T09:50:00.003-05:00

Basketball Player with Erb's Palsy

More Splints

2014-01-14T17:33:00.001-05:00

Today we made Camryn's 8th splint. This splint was not for her left arm but for her right arm and hand. We are making a splint for her good hand so we can start restraint therapy. To say she was unhappy while making the splint is an understatement. She was mad and she's going to be more mad when we start constraining her good arm. Everytime I hear her cry because of something that has to do with her arm my heart breaks a little more. Sometimes I feel like everything we do feels like torture to her. Something she can't understand right now is good for her. It breaks my heart to think we have a lifetime of stuff ahead of us for her arm.

Thumb

2014-01-13T05:52:00.001-05:00

So I've been saying for a while that Cams thumb looked funny to me and everyone blamed it on her rotation. Her rotation is finally really good and we've discovered that her thumb really doesn't come out. We are working hard on hand exercises and fine motor exercises to get those muscles stronger so that her thumb can come out all the way. Just another thing to add to our list to work on.

Speech Therapy and OT

2014-01-07T15:03:00.001-05:00

Progress

2014-01-02T17:26:00.001-05:00

Not only is Camryn getting overhead with her splint she started trying to do it without. The other day she reached overhead twice while at the playground reaching for a bar near the slide. It wasn't perfect but it made me cry. She's really making progress, it's incredible to think a year ago this month she had her surgery.

On another note, we went to the ENT today. No dairy and saline in nose 3x a day so it makes her breathe in through her nose. We go back in 3 weeks for hearing test and follow up.

A Few December Pictures

2013-12-29T19:26:00.003-05:00

Merry Christmas

2013-12-24T15:54:00.001-05:00

Progress! She can only do it with splint on!

No More Sick Days

2013-12-16T19:03:00.001-05:00

As I sit and write this I'm not sure what my evening will look like. Camryn is sick again. It started out with me actually starting to feel like I was getting sick to me feeling worse and Cam getting sick. I never got a chance to rest. She was up all night Saturday evening and last night. We took her to the urgent care and she has another ear infection. Today she was still running a fever and it wouldn't break so I brought her to the pediatrician. She has a double ear infection and pus in her throat. They had put her on a drug similar to Cipro but it made Camryn projectile vomit because it tasted so bad. I started her on amoxicillin that I had left over from last time she was sick so the doctor said to continue that. Today she was such a mess, she wouldn't eat, drink or take any meds. I wound up having to give her the Tylenol suppositories. She was just not a happy camper and wanted to sleep all day. She's sleeping now and I was able to get a third dose of the antibiotic in. I'm not taking the Cipro she wouldn't take ha. Anyhow, I had to call in sick obviously because my husband can't really miss work and who knows about tomorrow at this point. I think I may have only 2 days left and I know in January we are already using one of those to see Dr. Grossman. Does anyone use anything to keep up immune systems that they recommend?

Tummy time Finally

2013-12-14T08:32:00.001-05:00

It only took a 1.5 years for her to do this and not freak out!